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  • 1.
    Ander, Malin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Grönqvist, Helena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Cernvall, Martin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Engvall, Gunn
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Hedström, Mariann
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Lyhagen, Johan
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Statistiska institutionen.
    Mattsson, Elisabet
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Development of health-related quality of life and symptoms of anxiety and depression among persons diagnosed with cancer during adolescence: a 10-year follow-up study2016Inngår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, nr 5, s. 582-589Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective: The main aim was to investigate the development of health-related quality of life (HRQOL) and symptoms of anxiety and depression in a cohort diagnosed with cancer during adolescence from shortly after up to 10 years after diagnosis.

    Methods: Participants (n = 61) completed the SF-36 and the HADS shortly; six, 12, and 18 months; and two, three, four, and 10 years (n = 28) after diagnosis. Polynomial change trajectories were used to model development.

    Results: Polynomial change trajectories showed an initial increase which abated over time into a decrease which abated over time for the SF-36 subscales Mental Health and Vitality; an initial decline which abated over time into an increase for HADS anxiety; and an initial decline which abated over time into an increase which abated over time for HADS depression. The SF-36 mental component summary showed no change from two to 10 years after diagnosis whereas the SF-36 physical component summary showed an increase from two years after diagnosis which declined over time. Ten years after diagnosis 29% reported possible anxiety.

    Conclusions: Development of HRQOL and symptoms of anxiety and depression appears to be nonlinear among persons diagnosed with cancer during adolescence. Well into permanent survivorship an increase in symptoms of anxiety is shown and approximately a third of the participants report possible anxiety. The findings indicate the need for: studies designed to pinpoint the times of highest psychological risk, clinical follow-up focusing on psychological problems, and development of effective psychological interventions for survivors of adolescent cancer

  • 2.
    Ander, Malin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Norberg, Annika Lindahl
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Ljotsson, Brjann
    von Essen, Louise
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Identification of Cancer-related Psychological Suffering Experienced by Young People Diagnosed with Cancer During Adolescence and Development of a Psychological Treatment to Reduce This Suffering2015Konferansepaper (Fagfellevurdert)
  • 3.
    Ander, Malin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Mattsson, Elisabet
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Toft, Teolinda
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Norberg, Annika Lindahl
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    U-CARE: YoungCan-Development of an Internet-Based Self-Help Program of Psychosocial Support and Psychological Treatment2013Konferansepaper (Fagfellevurdert)
  • 4.
    Ander, Malin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Wikman, Anna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Ljótsson, Brjánn
    Karolinska Inst, Div Psychol, Dept Clin Neurosci, Stockholm, Sweden.
    Grönqvist, Helena
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Woodford, Joanne
    Univ Exeter, Coll Life & Environm Sci, CEDAR, Psychol, Exeter, Devon, England.
    Lindahl Norberg, Annika
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Guided Internet-Administered Self-Help to Reduce Symptoms Of Anxiety and Depression Among Adolescents and Young Adults Diagnosed With Cancer During Adolescence (U-CARE: YoungCan): study protocol for a feasibility trial2017Inngår i: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 7, nr 1, artikkel-id e013906Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Introduction A subgroup of adolescents and young adults diagnosed with cancer during adolescence reports elevated levels of anxiety and depressive symptoms and unmet needs for psychological support. Evidence-based psychological treatments tailored for this population are lacking. This protocol describes a feasibility study of a guided-internet-administered self-help programme (YoungCan) primarily targeting symptoms of anxiety and depression among young persons diagnosed with cancer during adolescence and of the planned study procedures for a future controlled trial. Methods/analysis The study is an uncontrolled feasibility trial with a pre-post and 3-month follow-up design. Potential participants aged 15-25years, diagnosed with cancer during adolescence, will be identified via the Swedish Childhood Cancer Registry. 30 participants will be included. Participants will receive YoungCan, a 12-week therapist-guided, internet-administered self-help programme consisting primarily of cognitive-behavioural therapy organised into individually assigned modules targeting depressive symptoms, worry and anxiety, body dissatisfaction and post-traumatic stress. Interactive peer support and psychoeducative functions are also available. Feasibility outcomes include: recruitment and eligibility criteria; data collection; attrition; resources needed to complete the study and programme; safety procedures; participants' and therapists' adherence to the programme; and participants' acceptability of the programme and study methodology. Additionally, mechanisms of impact will be explored and data regarding symptoms of anxiety, depression, post-traumatic stress, body dissatisfaction, reactions to social interactions, quality of life, axis I diagnoses according to the Mini International Neuropsychiatric Interview and healthcare service use will be collected. Exploratory analyses of changes in targeted outcomes will be conducted. Ethics/dissemination This feasibility protocol was approved by the Regional Ethical Review Board in Uppsala, Sweden (ref: 2016/210). Findings will be disseminated to relevant research, clinical, health service and patient communities through publications in peer-reviewed and popular science journals and presentations at scientific and clinical conferences.

  • 5.
    Bochennek, K.
    et al.
    Univ Hosp Frankfurt, Pediat Hematol & Oncol, Frankfurt, Germany..
    Dantonello, T.
    Olgahosp Klinikum Stuttgart, Cooperat Weichteilsarkom Studie CWS Study Ctr, Stuttgart, Germany..
    Borkhardt, A.
    Univ Hosp Duesseldorf, Pediat Hematol & Oncol, Dusseldorf, Germany..
    Dirksen, U.
    Univ Hosp Muenster, Pediat Oncol & Hematol, Munster, Germany..
    Eggert, A.
    Charite, Pediat Hematol & Oncol, D-13353 Berlin, Germany..
    Greiner, J.
    Ostschweizer Sauglings & Kinderspital, Ctr Pediat Hematol & Oncol, CH-9007 St Gallen, Switzerland..
    Handgretinger, R.
    Univ Hosp, Tubingen, Germany.;Fac Med Tuebingen, Genereal Pediat Hematol & Oncol, Tubingen, Germany..
    Kazanowska, B.
    Univ Hosp Wroclaw, Dept Pediat Bone Marrow Transplantat Oncol & Hema, Wroclaw, Poland..
    Kratz, C.
    Hannover Med Sch, Pediat Hematol & Oncol, Hannover, Germany..
    Ladenstein, R.
    St Anna Childrens Hosp, CCRI, Vienna, Austria..
    Ljungman, Gustaf
    Childrens Univ Hosp Uppsala, Dept Pediat Hematol & Oncol, Uppsala, Sweden..
    Hallmen, E.
    Olgahosp Klinikum Stuttgart, Cooperat Weichteilsarkom Studie CWS Study Ctr, Stuttgart, Germany..
    Koscielniak, E.
    Olgahosp Klinikum Stuttgart, Cooperat Weichteilsarkom Studie CWS Study Ctr, Stuttgart, Germany..
    Klingebiel, T.
    Univ Hosp Frankfurt, Pediat Hematol & Oncol, Frankfurt, Germany..
    Better Outcome With Maintenance Therapy: Pediatric Patients With Stage Iv Soft Tissue Sarcoma Benefit From Long Term Therapy Compared To Sct Or No Further Therapy2015Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 62, s. S152-S152Artikkel i tidsskrift (Annet vitenskapelig)
  • 6.
    Calissendorff-Selder, Maria
    et al.
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Quality of life varies with pain during treatment in adolescents with cancer.2006Inngår i: Ups J Med Sci, ISSN 0300-9734, Vol. 111, nr 1, s. 109-16Artikkel i tidsskrift (Fagfellevurdert)
  • 7. Caverius, Ulla
    et al.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Smärtbehandling vid procedurer hos barn – kort historik och dagsläget2014Inngår i: Information från Läkemedelsverket, ISSN 1101-7104, Vol. 25, nr 3, s. 24-26Artikkel i tidsskrift (Annet vitenskapelig)
  • 8.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Carlbring, Per
    Department of Psychology, Umeå University.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Guided self-help as intervention for traumatic stress in parents of children with cancer: Conceptualization, intervention strategies, and a case study2013Inngår i: Journal of psychosocial oncology, ISSN 0734-7332, E-ISSN 1540-7586, Vol. 31, nr 1, s. 13-29Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Being a parent of a child diagnosed with cancer poses an enormous stressor. Indeed, several parents have difficulties adjusting to such a situation and react with symptoms of traumatic stress, depression, and reduced quality of life. However, there is little conceptual work on behavioral mechanisms that contribute to suboptimal adaptation in these parents. The authors present a conceptualization in which experiential avoidance and rumination are suggested to contribute to increased levels of traumatic stress and suboptimal adaption. Based on this conceptualization, a recently developed intervention for parents of children with cancer, in the form of guided self-help, is presented. Finally, the authors present a successful case study as an example of the application of this intervention. Clinical implications and suggestions for future research are discussed.

  • 9.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Carlbring, Per
    Institutionen för psykologi, Umeå universitet.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Guided self-help as intervention for traumatic stress in parents of children with cancer: Conceptualization, intervention strategies, and two case studies2012Konferansepaper (Fagfellevurdert)
  • 10.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Guided Self-help via the Internet for Parents of Children Recently Diagnosed with Cancer: A Randomized Controlled Trial2014Konferansepaper (Fagfellevurdert)
  • 11.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Health Economic Outcomes One Year after Internet-based Guided Self-help Targeting Posttraumatic Stress Symptoms in Parents of Children Recently Diagnosed with Cancer: A Randomized Controlled Trial2015Konferansepaper (Fagfellevurdert)
  • 12.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Psykiatri, Akademiska sjukhuset.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    von Essen, Louise
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Internet-based Guided Self-help for Parents of Children Diagnosed with Cancer: 1-year Follow-up of a Randomized Controlled Trial2015Konferansepaper (Annet vitenskapelig)
  • 13.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Internet-based guided self-help for parents of children on cancer treatment: A randomized controlled trial2015Inngår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 24, nr 9, s. 1152-1158Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objective

    The aim of the study was to investigate the feasibility and preliminary efficacy of an Internet-based guided self-help intervention for posttraumatic stress symptoms (PTSS) and related symptoms in parents of children on cancer treatment.

    Methods

    Parents of children on cancer treatment, who fulfilled the modified symptom criteria on the PTSD Checklist, were randomly allocated to the intervention or to a wait-list control condition. The intervention group accessed a 10-week guided self-help program via the Internet based on principles from cognitve behavior therapy. The primary outcome PTSS and the secondary outcomes depression and anxiety were assessed by self-report preintervention and postintervention.

    Results

    Seven hundred forty-seven parents were approached and informed about the study, 92 were assessed for eligibility, and 58 were included and randomized to the intervention (n = 31) or wait list (n  = 27). Eightteen participants completed the intervention. Intention-to-treat analyses indicated a significant effect of the intervention on PTSS with a large between-group effect size at postassessment (Cohen's d = 0.88). The intervention group reported reductions in PTSS with a large within-group effect size (d = 1.62) compared with a minimal reduction in the wait-list group (d  = 0.09). There was a significant intervention effect on depression and anxiety and reductions in the intervention group with large within-group effect sizes (d = 0.85–1.09).

    Conclusions

    Findings indicate a low enrollment rate and considerable attrition but also that Internet-based guided self-help shows promise for parents of children on cancer treatment who report a high level of PTSS and would like to take part in an Internet-based intervention.

  • 14.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Carlbring, Per
    Wikman, Anna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Klinisk psykologi i hälso- och sjukvård.
    Twelve-Month Follow-Up of a Randomized Controlled Trial of Internet-Based Guided Self-Help for Parents of Children on Cancer Treatment2017Inngår i: Journal of Medical Internet Research, ISSN 1438-8871, E-ISSN 1438-8871, Vol. 19, nr 7, artikkel-id e273Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: A substantial proportion of parents of children on cancer treatment report psychological distress such as symptoms of post-traumatic stress (PTSS), depression, and anxiety. During their child's treatment many parents also experience an economic burden.

    OBJECTIVE: The aim of this study was to evaluate the long-term efficacy of Internet-based guided self-help for parents of children on cancer treatment.

    METHODS: This study was a parallel randomized controlled trial comparing a 10-week Internet-based guided self-help program, including weekly support from a therapist via encrypted email, with a wait-list control condition. The intervention was based on cognitive behavior therapy (CBT) and focused on psychoeducation and skills to cope with difficult thoughts and feelings. Primary outcome was self-reported PTSS. Secondary outcomes were self-reported symptoms of depression, anxiety, health care consumption, and sick leave during the past month. Outcomes were assessed pre- and postintervention and at 12-month follow-up. Parents of children on cancer treatment were invited by health care personnel at pediatric oncology centers, and parents meeting the modified symptom criteria on the PCL-C were included in the study. Self-report assessments were provided on the Web.

    RESULTS: A total of 58 parents of children on cancer treatment (median months since diagnosis=3) were included in the study (intervention n=31 and control n=27). A total of 18 participants completed the intervention, and 16 participants in each group participated in the 12-month follow-up. Intention-to-treat analyses revealed significant effects in favor of the intervention on the primary outcome PTSS, with large between-group effect sizes at postassessment (d=0.89; 95% CI 0.35-1.43) and at 12-month follow-up (d=0.78; 95% CI 0.25-1.32). Significant effects in favor of the intervention on the secondary outcomes depression and anxiety were also observed. However, there was no evidence for intervention efficacy on health care consumption or sick leave.

    CONCLUSIONS: Using the Internet to provide psychological interventions shows promise as an effective mode of delivery for parents reporting an increased level of PTSS and who consider Internet-based interventions as a viable option. Future research should corroborate these findings and also develop and evaluate interventions and policies that may help ameliorate the economic burden that parents may face during their child's treatment for cancer.

  • 15.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Psykiatri, Akademiska sjukhuset.
    Hovén, Emma
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Carlbring, Per
    von Essen, Louise
    Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Attentional bias towards cancer-related stimuli is related to symptoms of posttraumatic stress in parents of children recently diagnosed with cancer2015Konferansepaper (Fagfellevurdert)
  • 16.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Hovén, Emma
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Carlbring, Per
    Stockholm Univ, Dept Psychol, S-10691 Stockholm, Sweden.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Posttraumatic stress and attentional bias towards cancer-related stimuli in parents of children recently diagnosed with cancer2016Inngår i: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, nr 4, artikkel-id e0152778Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Objectives: To investigate whether posttraumatic stress symptoms (PTSS) are related to attentional bias towards cancer-related stimuli among parents of children recently diagnosed with cancer.

    Methods: Sixty-two parents completed questionnaires measuring PTSS, depression, and anxiety and the emotional Stroop task via the Internet. The emotional Stroop task included cancer-related words, cardiovascular disease-related words, and neutral words.

    Results: Participants were split in two groups based on the median of PTSS: High-PTSS and Low-PTSS. There was a significant interaction between word-type and group and a planned contrast test of this interaction indicated that the High-PTSS group had longer response latencies on cancer-related words compared to the other word-type and group combinations.

    Conclusions: Findings suggest that PTSS are related to attentional bias towards cancer-related stimuli among parents of children recently diagnosed with cancer. Implications of this finding for the understanding of PTSS in this population, future research, and clinical practice are discussed.

  • 17.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Silberleitner, Nicola
    University of Konstanz, Department of Psychology, Konstanz, Germany.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Avoidance and hyperarousal mediates the relationship between reexperiencing and dysphoria in parents of children with cancer: a longitudinal analysis2012Inngår i: 12th International Congress of Behavioral Medicine, 2012Konferansepaper (Fagfellevurdert)
    Abstract [en]

    There is little theoretical and empirical work regarding the mechanisms underlying the development of traumatic stress among parents of children with cancer. Such work would add to the understanding of this phenomenon and could inform intervention strategies for this group. Cognitive processing theory stipulates that avoidance mediates the relationship between intrusive thoughts about trauma and psychological distress (Creamer, et al., 1992). Evidence also suggests that hyperarousal predicts emotional numbing in response to trauma (Litz, et al., 1997; Weems, et al., 2003). The purpose of this study was to investigate the mediating role of avoidance and hyperarousal in the relationship between reexperiencing and dysphoria among parents of children on cancer treatment.

    We used data from a longitudinal study with three assessment points: T1 = 2 weeks after the child´s diagnosis (n = 249), T2 = two months after the child´s diagnosis (n = 234), and T3 = four months after diagnosis (n = 203). The PTSD-Checklist Civilian was used as a measure of symptoms of traumatic stress interpreted with Simms et al. (2002) four-factor theory of traumatic stress. Two models were evaluated with mediation analysis using bias corrected bootstrap estimation of indirect effects and 95% confidence intervals (CI; Preacher and Hayes, 2008). The first model included two indicators of avoidance at T2 as mediators of the relationship between reexperiencing at T1 and dysphoria at T3, while controlling for initial levels of included variables and gender. In the second model hyperarousal at T2 was added as a mediator.

    In the first model there was a significant total indirect effect from reexperiencing to dysphoria via avoidance (0.048, CI = 0.012-0.116). However, only avoidance of activities or situations reminding of the child´s disease had a significant specific indirect effect (0.044, CI = 0.009-0.097). In the second model there was a significant total indirect effect from reexperiencing to dysphoria via avoidance and hyperarousal (0.140, CI = 0.076-0.233). However, only hyperarousal contributed with a significant specific indirect effect (0.110, CI = 0.061-0.212).

    The current analyses suggest that avoidance and hyperarousal both are important targets for intervention in this population.

  • 18.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Silberleitner, Nicola
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Avoidance and hyperarousal mediate the relationship between reexperiencing and dysphoria in parents of children with cancer: a longitudinal analysis2012Konferansepaper (Fagfellevurdert)
  • 19.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Psykiatri, Akademiska sjukhuset.
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Wikman, Anna
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Carlbring, Per
    Stockholm Univ, Stockholm, Sweden..
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essén, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa. Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi.
    Dimensions of Posttraumatic Stress Symptoms and their Relationships with Depression, Anxiety, and Quality of Life in Parents of Children Recently Diagnosed with Cancer2016Inngår i: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, nr SP. S3, s. 76-76Artikkel i tidsskrift (Annet vitenskapelig)
  • 20.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Skogseid, Ellen
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Carlbring, Per
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Experiential Avoidance and Rumination in Parents of Children on Cancer Treatment: Relationships with Posttraumatic Stress Symptoms and Symptoms of Depression2016Inngår i: Journal of clinical psychology in medical settings, ISSN 1068-9583, E-ISSN 1573-3572, Vol. 23, nr 1, s. 67-76Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    We conducted a cross-sectional survey study to investigate whether there is a relationship between experiential avoidance (EA), rumination, post-traumatic stress symptoms (PTSS), and symptoms of depression, in parents of children on cancer treatment. Data from 79 parents (55 mothers) of 79 children with a median of three months since their cancer diagnosis were included in cross-sectional analyses. EA and rumination were positively correlated with PTSS and symptoms of depression. EA and rumination did not provide incremental explained variance in PTSS over and above that explained by symptoms of depression, while controlling for symptoms of anxiety and demographic characteristics. However, EA and rumination provided incremental explained variance in symptoms of depression over and above that explained by PTSS, while controlling for symptoms of anxiety and demographic characteristics. Rumination and EA are important constructs in the understanding of PTSS and symptoms of depression in parents of children on cancer treatment. Future research should delineate the temporal relationships between these constructs.

  • 21.
    Cernvall, Martin
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Skogseid, Ellen
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Lisa
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård. Uppsala universitet, Humanistisk-samhällsvetenskapliga vetenskapsområdet, Samhällsvetenskapliga fakulteten, Institutionen för psykologi.
    The relationship between traumatic stress, experiential avoidance, and depression in parents of children recently diagnosed with cancer2012Inngår i: 12th international Congress of Behavioral Medicine, 29 August - 1 September 2012, Budapest Hilton Hungary: Program Book, 2012, s. 138-138Konferansepaper (Fagfellevurdert)
    Abstract [en]

    Parents of children recently diagnosed with cancer can experience severe psychosocial distress. Experiential avoidance has been defined as the tendency to avoid or escape from certain private experiences (e.g., thoughts, feelings, memories) or contexts that elicit them (Hayes et al., 1996). This construct has been shown to be linked to distress in several populations and has received increased interest as a target for intervention. The purpose of this study was to investigate the relationship between traumatic stress, experiential avoidance, and depression in parents of children recently diagnosed with cancer. It was hypothesized that experiential avoidance would account for the relationship between traumatic stress and depression. 

    48 parents (33 mothers and 15 fathers) of children recently diagnosed with cancer and who participated in the screening/pre-assessment of a RCT of a psychosocial intervention were included in the current cross-sectional study. The mean (SD) of months since the child’s diagnosis was 3.5 (1.8). Parents provided self-report of demographic characteristics, general anxiety, traumatic stress, experiential avoidance, and depression.

    Hierarchical regression was used with depression as dependent variable. In step 1 demographic variables and general anxiety was entered (∆R2 = .57, p < .001). In step 2 traumatic stress was added resulting in a significant increase in explained variance (∆R2 = .04, p < .05, β for traumatic stress = 0.39, p < .05). In step 3 experiential avoidance was added resulting in a significant increase in explained variance (∆R2 = .06, p < .05, β for experiential avoidance = 0.35, p < .05). Furthermore, traumatic stress was no longer a significant predictor of depression (β = 0.15, p = 40). Total R2 in the final model was .68. Mediation analysis (Preacher & Hayes, 2008) confirmed a significant indirect effect from traumatic stress to depression via experiential avoidance (estimate = 0.21, bootstrap 95% CI = 0.03-0.38). 

    The current results suggest that experiential avoidance accounts for the relationship between traumatic stress and depression in parents of children recently diagnosed with cancer. Experiential avoidance could be a potential target in psychosocial interventions for this group.

  • 22.
    Cooper, Tess E
    et al.
    Cochrane Pain, Palliative and Supportive Care Group, Pain Research Unit, Churchill Hospital, Oxford, UK.
    Heathcote, Lauren C
    Department of Anesthesiology, Perioperative and Pain Medicine, Stanford University, Palo Alto, California, USA.
    Anderson, Brian
    Paediatric Intensive Care Unit, Starship Childrens Hospital, Auckland, New Zealand.
    Grégoire, Marie-Claude
    Paediatric Palliative Care, Department of Paediatrics, IWK Health Centre, Dalhousie University, Halifax, Canada.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Barnneurologi/Barnonkologi.
    Eccleston, Christopher
    Cochrane Pain, Palliative and Supportive Care Group, Pain Research Unit, Churchill Hospital, Oxford, UK.
    Non-steroidal anti-inflammatory drugs (NSAIDs) for cancer-related pain in children and adolescents2017Inngår i: Cochrane Database of Systematic Reviews, ISSN 1469-493X, E-ISSN 1469-493X, Vol. 7, artikkel-id CD012563Artikkel, forskningsoversikt (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Pain is a common feature of childhood and adolescence around the world, and for many young people, that pain is chronic. The World Health Organization (WHO) guidelines for pharmacological treatments for persisting pain in children acknowledge that pain in children is a major public health concern of high significance in most parts of the world. Views on children's pain have changed over time and relief of pain is now seen as important. In the past, pain was largely dismissed and was frequently left untreated, and it was assumed that children quickly forgot about painful experiences.We designed a suite of seven reviews in chronic non-cancer pain and cancer pain (looking at antidepressants, antiepileptic drugs, non-steroidal anti-inflammatory drugs, opioids, and paracetamol as priority areas) to review the evidence for children's pain using pharmacological interventions.As one of the leading causes of mortality and morbidity for children and adolescents in the world today, childhood cancer (and its associated pain) is a major health concern. Specific mortality and morbidity data relating to children are not currently identified. All childhood cancer rates are on the rise; for example, in the USA approximately 10,380 children aged under 15 years were expected to be diagnosed with cancer by the end of 2016. However, with survival rates also increasing, over 80% of paediatric cancer patients are expected to survive for five years or more, thus identifying the need to address pain management in this population.Cancer pain in infants, children, and adolescents is primarily nociceptive pain with negative long term effects. Cancer-related pain is generally caused directly by the tumour itself such as compressing on the nerve or inflammation of the organs. Cancer-related pain generally occurs as a result of perioperative procedures, nerve damage caused by radiation or chemotherapy treatments, or mucositis. However, this review focused on pain caused directly by the tumour itself such as nerve infiltration, external nerve compression, and other inflammatory events.Non-steroidal anti-inflammatory drugs (NSAIDs) are used to treat pain, reduce fever, and for their anti-inflammatory properties. They are commonly used within paediatric pain management. NSAIDs are currently licensed for use in western countries, however not approved for infants aged under three months. Primary adverse effects include gastrointestinal issues and possible renal impairment with long term use. Other adverse effects in children include diarrhoea, headache, nausea, constipation, rash, dizziness, and abdominal pain.

    OBJECTIVES: To assess the analgesic efficacy, and adverse events, of non-steroidal anti-inflammatory drugs (NSAIDs) used to treat cancer-related pain in children and adolescents aged from birth and 17 years, in any setting.

    SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) via the Cochrane Register of Studies Online, MEDLINE via Ovid, and Embase via Ovid from inception to 21 February 2017. We also searched the reference lists of retrieved studies and reviews, and searched online clinical trial registries.

    SELECTION CRITERIA: Randomised, double-blind trials of any dose, and any route, treating cancer-related pain in children and adolescents, comparing NSAIDs with placebo or an active comparator.

    DATA COLLECTION AND ANALYSIS: Two review authors independently assessed studies for eligibility. We planned to use dichotomous data to calculate risk ratio and number needed to treat for one additional event, using standard methods. We assessed GRADE (Grading of Recommendations Assessment, Development and Evaluation) and planned to create a 'Summary of findings' table.

    MAIN RESULTS: No studies were eligible for inclusion in this review (very low quality evidence). We downgraded the quality of evidence by three levels due to the lack of data reported for any outcome.

    AUTHORS' CONCLUSIONS: There is no evidence from randomised controlled trials that non-steroidal anti-inflammatory drugs (NSAIDs) reduce cancer-related pain in children and adolescents. This means that no reliance or conclusions can be made about efficacy or harm in the use of NSAIDs to treat chronic cancer-related pain in children and adolescents.

  • 23. Dantonello, Tobias M.
    et al.
    Int-Veen, Christoph
    Schuck, Andreas
    Seitz, Guido
    Leuschner, Ivo
    Nathrath, Michaela
    Schlegel, Paul-Gerhardt
    Kontny, Udo
    Behnisch, Wolfgang
    Veit-Friedrich, Iris
    Kube, Stefanie
    Hallmen, Erika
    Kazanowska, Bernarda
    Ladenstein, Ruth
    Paulussen, Michael
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Bielack, Stefan S.
    Klingebiel, T.
    Koscielniak, E.
    Survival following disease recurrence of primary localized alveolar rhabdomyosarcoma2013Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 60, nr 8, s. 1267-1273Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background Recurrences in primary localized alveolar rhabdomyosarcoma (RMA) are common. Post-relapse survival is poor. We evaluated prognostic factors including relapse treatment in patients with recurrent RMA. Methods Relapses occurred in 115/235 patients with nonmetastatic RMA treated in four consecutive CWS-trials after achievement of a complete remission. Sufficient information about post-relapse treatment and outcome could be obtained in 99 patients and was retrospectively analyzed. Results Nine of 99 patients received no salvage therapy and died after a median of 2 months. The remaining 90 patients received multimodal relapse treatment including mandatory chemotherapy. Recurrences were grossly resected in 39 patients; 57 patients received radiation. At a median follow-up from relapse of 8 years, 20 patients were alive and disease-free (5-year post-relapse survival [PROS] 21.3 +/- 8). All surviving patients apart from a single individual had an isolated, circumscribed recurrence. Sixteen of 20 survivors were treated with adequate local relapse therapy (ALRT, i.e., either complete resection or gross resection+radiation). Survival in the subgroup of 27 individuals with circumscribed recurrences and ALRT was significantly better (PROS 53.7 +/- 19) compared with disseminated recurrences and/or tumors treated without ALRT. Absence of primary lymph node involvement, circumscribed relapses, ALRT, and achievement of a second CR were identified as independent favorable risk factors. Conclusion Post-relapse survival for primary localized RMA is generally poor. However, certain patient groups differed significantly in their likelihood of survival and 50% of patients with circumscribed relapses treated with ALRT survived. These findings may form the basis for an evidence-based risk-stratification for recurrent disease including relapse treatment. 

  • 24. Dantonello, Tobias M.
    et al.
    Kube, Stefanie
    von Kalle, Thekla
    Carrle, Dorothe
    Feuchtgruber, Simone
    Kosztyla, Daniel
    Niggli, Felix
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Bielack, Stefan S.
    Klingebiel, Thomas
    Koscielniak, Ewa
    Winkler, Peter
    Improved radiologic assessment of children with soft tissue sarcoma in the framework of the cooperative weichteilsarkom studiengruppe (CWS)2012Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 59, nr 6, s. 977-977Artikkel i tidsskrift (Annet vitenskapelig)
  • 25.
    Dantonello, Tobias M
    et al.
    Olgahospital, Pediatrics 5, Klinikum Stuttgart, Germany.
    Leuschner, Ivo
    Vokuhl, Christian
    Gfroerer, Stefan
    Schuck, Andreas
    Kube, Stefanie
    Nathrath, Michaela
    Bernbeck, Benedikt
    Kaatsch, Peter
    Pal, Niklas
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Bielack, Stefan S
    Klingebiel, Thomas
    Koscielniak, Ewa
    Olgahospital, Pediatrics 5, Klinikum Stuttgart, Germany.
    Malignant ectomesenchymoma in children and adolescents: Report from the Cooperative Weichteilsarkom Studiengruppe (CWS)2013Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 60, nr 2, s. 224-229Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND:

    Malignant ectomesenchymoma (MEM) is a soft tissue tumor with heterologous rhabdomyoblastic components believed to arise from pluripotent migratory neural crest cells. To date merely 50 cases have been published and the knowledge about the course of disease and optimal treatment is limited.

    METHODS:

    Six patients with MEM were registered 1996-2009. The diagnosis was confirmed according to current criteria. Their treatment and outcome was analyzed.

    RESULTS:

    The median age of the three females and three males was 0.6 years (range, 0.2-13.5). The mesenchymal component in all tumors was rhabdomyosarcoma (RMS), the neural component ganglioneuroblastoma/neuroblastoma (n = 5) and peripheral primitive neuroectodermal tumor in one case. Five patients presented with localized, one with metastatic disease. All but one patient received multiagent chemotherapy during their initial treatment. The tumors of 4/5 patients with localized MEM were at least grossly resected at best surgery; the patient without gross resection was additionally irradiated. Three of four evaluable tumors responded well to induction chemotherapy. All patients achieved a first complete remission (CR), but three recurrences (two local, one systemic) occurred. The individual with metastatic MEM did not survive, but all five patients with localized MEM are currently alive in CR with a median follow-up of 5 years (range: 2.1-13.7).

    CONCLUSIONS:

    Risk-factors and outcome of MEM appear to be comparable with other highly malignant pediatric soft tissue sarcoma when a multimodal treatment strategy including chemotherapy and adequate local treatment is pursued. We propose that treatment of patients with MEM be done according to pediatric protocols similar to other rhabdomyosarcoma-like soft tissue sarcoma.

  • 26.
    Dantonello, Tobias M
    et al.
    Pediatrics 5, Olgahospital, Klinikum Stuttgart, Germany.
    Lochbühler, Helmut
    Department of Pediatric Surgery, Olgahospital, Klinikum Stuttgart, Germany.
    Schuck, Andreas
    Department of Radiotherapy, University of Muenster, Münster, Germany.
    Kube, Stefanie
    Pediatrics 5, Olgahospital, Klinikum Stuttgart, Germany.
    Godzinski, Jan
    Department of Pediatric Surgery, University of Wroclaw, Poland.
    Sköldenberg, Erik
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Barnkirurgi.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Kosztyla, Daniel
    Pediatrics 5, Olgahospital, Klinikum Stuttgart, Germany.
    Veit-Friedrich, Iris
    Pediatrics 5, Olgahospital, Klinikum Stuttgart, Germany.
    Hallmen, Erika
    Pediatrics 5, Olgahospital, Klinikum Stuttgart, Germany.
    Feuchtgruber, Simone
    Pediatrics 5, Olgahospital, Klinikum Stuttgart, Germany.
    Wessalowski, Ruediger
    Department of Pediatric Oncology, University of Duesseldorf, Germany.
    Franke, Markus
    Department of Pediatric Surgery, University of Freiburg, Germany.
    Bielack, Stefan S
    Pediatrics 5, Olgahospital, Klinikum Stuttgart, Germany.
    Klingebiel, Thomas
    Department of Pediatric Oncology, University of Frankfurt, Germany.
    Koscielniak, Ewa
    Pediatrics 5, Olgahospital, Klinikum Stuttgart, Germany.
    Challenges in the Local Treatment of Large Abdominal Embryonal Rhabdomyosarcoma2014Inngår i: Annals of Surgical Oncology, ISSN 1068-9265, E-ISSN 1534-4681, Vol. 21, nr 11, s. 3579-3586Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND:

    Embryonal rhabdomyosarcoma is the most common pediatric soft tissue sarcoma. The best local treatment in large, nonmetastatic primary unresected nongenitourinary embryonal rhabdomyosarcoma of the abdomen (LARME) is however unclear.

    METHODS:

    We analyzed patients with LARME treated in four consecutive CWS trials. All diagnoses were confirmed by reference reviews. Treatment included multiagent chemotherapy and local treatment of the primary tumor with surgery and/or radiotherapy. The impact of primary debulking surgery (PDS) also was studied.

    RESULTS:

    One hundred patients <21 years with a median age of 4 years had LARME. Sixty-one of them had a tumor >10 cm in diameter at diagnosis. PDS was performed in 19 of 100 children. The outcomes of patients with PDS were similar to those of the other patients. In 36 children, the tumor was resected after induction chemotherapy; 60 RME were irradiated. The toxic effects of radiochemotherapy were not significantly increased compared with the nonirradiated patients. With a median follow-up of 10 years, the 5-year EFS and OS were 52 ± 10 and 65 ± 9 %, respectively. Significant risk factors in multivariate analysis were age >10 years; no achievement of complete remission; and inadequate secondary local treatment, defined as incomplete secondary resection or no radiation.

    CONCLUSIONS:

    Children with LARME have a fair prognosis, despite an often huge tumor size and unfavorable primary site, if the tumors can either be resected or irradiated following induction chemotherapy. PDS was only performed in a small subgroup. Radiation performed concomitantly with chemotherapy did not increase the acute toxicity significantly.

  • 27. Dantonello, Tobias M.
    et al.
    Schuck, Andreas
    Kube, Stefanie
    Greulich, Michael
    Kuehnle, Ingrid
    Feuchtgruber, Simone
    Kosztyla, Daniel
    Leuschner, Ivo
    Kazanowska, Bernarda
    Godzinski, Jan
    Ladenstein, Ruth
    Niggli, Felix
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Bielack, Stefan S.
    Klingebiel, Thomas
    Koscielniak, Ewa
    Delayed resection can avoid irradiation in localized embryonal rhabdomyosarcoma2012Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 59, nr 6, s. 977-977Artikkel i tidsskrift (Annet vitenskapelig)
  • 28.
    Dantonello, Tobias M
    et al.
    Paediatrics 5 (oncology, hematology, immunology), Olgahospital Klinikum Stuttgart, Germany.
    Stark, Monika
    Paediatrics 5 (oncology, hematology, immunology), Olgahospital Klinikum Stuttgart, Germany.
    Timmermann, Beate
    Fuchs, Jörg
    Selle, Barbara
    Linderkamp, Christin
    Handgretinger, Rupert
    Hagen, Rudolf
    Feuchtgruber, Simone
    Kube, Stefanie
    Kosztyla, Daniel
    Kazanowska, Bernarda
    Ladenstein, Ruth
    Niggli, Felix
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Bielack, Stefan S
    Klingebiel, Thomas
    Koscielniak, Ewa
    Paediatrics 5 (oncology, hematology, immunology), Olgahospital Klinikum Stuttgart, Germany.
    Tumour volume reduction after neoadjuvant chemotherapy impacts outcome in localised embryonal rhabdomyosarcoma2015Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 62, nr 1, s. 16-23Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND: Response (tumour volume reduction) to induction chemotherapy has been used to stratify secondary local and systemic treatment of Intergroup Rhabdomyosarcoma Study Group III (IRSG-III) embryonal rhabdomyosarcoma (RME) in consecutive CWS-trials. To evaluate its actual impact we studied response-related treatment and outcomes.

    PROCEDURE: Patients with IRSG-III RME <21 years and non-response (NR, <33% volume reduction) in five consecutive CWS-trials were analysed and compared with partial responders (PAR, ≥33% reduction). The NR was reviewed and sub-classified as Objective Response (OR, <0%-33% reduction) or Stable/Progressive Disease (SPD).

    RESULTS: Fifty-nine of 529 patients had NR (n = 34 OR, n = 25 SPD). Primary risk-factors including age, tumour size, and TN-classification did not differ between NR and PAR groups but NR had more patients with unfavourable sites comparatively (P = 0.04). There were no differences in primary risk-factors between OR and SPD. Significant factors associated with poor outcome in multivariate analysis were NR, TN-classification, age >10 years, tumour size >5 cm and therapy in older trials. After response assessment n = 24 NR continued to receive induction chemotherapy, n = 32 received other combinations and n = 3 no further chemotherapy. Forty-two non-responders were irradiated, and the tumours were completely resected in n = 20. After a median follow-up of 8 years, 34 NR are alive. Seventeen of 21 failures leading to disease-related deaths were locoregional. The five-year overall survival rate (OS) was 76 ± 4% for PAR, 79 ± 14% for OR, but only 40 ± 19% for SPD (P < 0.001).

    CONCLUSION: Response to induction chemotherapy appears to be an important surrogate marker of poor outcome in patients with SPD largely due to ineffective local control.

  • 29.
    Eccleston, Christopher
    et al.
    Univ Bath, Ctr Pain Res, Bath BA2 7AY, Avon, England;Univ Ghent, Dept Clin & Hlth Psychol, Ghent, Belgium.
    Fisher, Emma
    Univ Bath, Ctr Pain Res, Bath BA2 7AY, Avon, England;Oxford Univ Hosp, Pain Palliat & Support Care, Oxford, England.
    Cooper, Tess E.
    Univ Sydney, Fac Med & Hlth, Sch Publ Hlth, Sydney, NSW, Australia.
    Gregoire, Marie-Claude
    Dalhousie Univ, Dept Pediat, Halifax, NS, Canada.
    Heathcote, Lauren C.
    Stanford Univ, Sch Med, Dept Anesthesiol Perioperat & Pain Med, Palo Alto, CA 94304 USA.
    Krane, Elliot
    Stanford Univ, Sch Med, Dept Anesthesiol Perioperat & Pain Med, Perintnv, Palo Alto, CA 94304 USA.
    Lord, Susan M.
    Hunter Med Res Inst, Childrens Complex Pain Serv, John Hunter Childrens Hosp, Newcastle, NSW, Australia;Univ Newcastle, Fac Hlth & Med, Newcastle, NSW, Australia.
    Sethna, Navil F.
    Harvard Med Sch, Boston Childrens Hosp, Dept Anesthesiol Crit Care & Pain Med, Boston, MA 02115 USA.
    Anderson, Anna-Karenia
    Royal Marsden Hosp, London, England.
    Anderson, Brian
    Univ Auckland, Dept Anaesthesiol, Auckland, New Zealand.
    Clinch, Jacqueline
    Univ Bristol, Bristol Royal Childrens Hosp, Bristol, Avon, England;Royal Natl Hosp Rheumat Dis, Bath, Avon, England.
    Gray, Andrew L.
    Univ KwaZulu Natal, Div Pharmacol, Discipline Pharmaceut Sci, Durban, South Africa.
    Gold, Jeffrey, I
    Univ Southern Calif, Keck Sch Med, Anesthesiol Pediat & Psychiat & Behav Sci, Los Angeles, CA USA;Childrens Hosp Los Angeles, Pediat Pain Management Clin, Los Angeles, CA 90027 USA.
    Howard, Richard F.
    Great Ormond St Hosp Sick Children, Dept Anaesthesia & Pain Med, London, England.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Barnneurologi/Barnonkologi.
    Moore, R. Andrew
    Univ Oxford, Churchill, Dept Clin Neurosci, Pain Res,Nuffield, Oxford, England.
    Schechter, Neil
    Harvard Med Sch, Boston Childrens Hosp, Dept Anesthesiol, Boston, MA 02115 USA.
    Wiffen, Philip J.
    Univ Oxford, Churchill, Dept Clin Neurosci, Pain Res,Nuffield, Oxford, England.
    Wilkinson, Nick M. R.
    Kings Coll London, Evelina London Childrens Hosp, Dept Paediat, London, England.
    William, David G.
    Great Ormond St Hosp Children NHS Fdn Trust, Anaesthet Dept, London, England.
    Wood, Chantal
    Univ Limoges, Univ Hosp Limoges, Chron Pain Ctr, Dept Rheumatol, Haute Vienne, France.
    van Tilburg, Miranda A. L.
    Campbell Univ, Coll Pharm & Hlth Sci, Buies Creek, NC 27506 USA;Univ N Carolina, Div Gastroenterol & Hepatol, Chapel Hill, NC 27515 USA.
    Zernikow, Boris
    Childrens & Adolescents Hosp, German Paediat Pain Ctr, Datteln, Germany;Witten Herdecke Univ, Childrens Pain Therapy & Paediat Palliat Care, Fac Hlth, Sch Med, Witten, Germany.
    Pharmacological interventions for chronic pain in children: an overview of systematic reviews2019Inngår i: Pain, ISSN 0304-3959, E-ISSN 1872-6623, Vol. 160, nr 8, s. 1698-1707Artikkel, forskningsoversikt (Fagfellevurdert)
    Abstract [en]

    We know little about the safety or efficacy of pharmacological medicines for children and adolescents with chronic pain, despite their common use. Our aim was to conduct an overview review of systematic reviews of pharmacological interventions that purport to reduce pain in children with chronic noncancer pain (CNCP) or chronic cancer-related pain (CCRP). We searched the Cochrane Database of Systematic Reviews, Medline, EMBASE, and DARE for systematic reviews from inception to March 2018. We conducted reference and citation searches of included reviews. We included children (0-18 years of age) with CNCP or CCRP. We extracted the review characteristics and primary outcomes of >= 30% participant-reported pain relief and patient global impression of change. We sifted 704 abstracts and included 23 systematic reviews investigating children with CNCP or CCRP. Seven of those 23 reviews included 6 trials that involved children with CNCP. There were no randomised controlled trials in reviews relating to reducing pain in CCRP. We were unable to combine data in a meta-analysis. Overall, the quality of evidence was very low, and we have very little confidence in the effect estimates. The state of evidence of randomized controlled trials in this field is poor; we have no evidence from randomised controlled trials for pharmacological interventions in children with cancer-related pain, yet cannot deny individual children access to potential pain relief.

  • 30.
    Englund, Annika
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Glimelius, Bengt
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi. Karolinska Inst, Dept Med, Clin Epidemiol Unit, Stockholm, Sweden..
    Rostgaard, K.
    Statens Serum Inst, Dept Epidemiol Res, Copenhagen S, Denmark..
    Eloranta, S.
    Karolinska Inst, Dept Med, Clin Epidemiol Unit, Stockholm, Sweden..
    Molin, Daniel
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Kuusk, T.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Brown, P. de Nully
    Rigshosp, Dept Haematol, Copenhagen, Denmark..
    Kamper, P.
    Aarhus Univ Hosp, Dept Haematol, Aarhus, Denmark..
    Smedby, K. E.
    Karolinska Inst, Dept Med, Clin Epidemiol Unit, Stockholm, Sweden..
    Hjalgrim, H.
    Statens Serum Inst, Dept Epidemiol Res, Copenhagen S, Denmark..
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Hjalgrim, L. Lyngsie
    Statens Serum Inst, Dept Epidemiol Res, Copenhagen S, Denmark.;Rigshosp, Dept Paediat Haematol & Oncol, Child & Youth Clin, Copenhagen, Denmark..
    Hodgkin Lymphoma In Children, Adolescents And Young Adults-A Comparative Study Of Clinical Presentation And Treatment Outcome2016Inngår i: Haematologica, ISSN 0390-6078, E-ISSN 1592-8721, Vol. 101, s. 36-36Artikkel i tidsskrift (Annet vitenskapelig)
  • 31.
    Englund, Annika
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Glimelius, Ingrid
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi. Karolinska Inst, Dept Med Solna, Clin Epidemiol Unit, Stockholm.
    Rostgaard, Klaus
    Statens Serum Inst, Dept Epidemiol Res, Copenhagen.
    Smedby, Karin E
    Karolinska Inst, Dept Med Solna, Clin Epidemiol Unit, Stockholm; Karolinska Univ Hosp, Hematol Ctr, Stockholm.
    Eloranta, Sandra
    Karolinska Inst, Dept Med Solna, Clin Epidemiol Unit, Stockholm.
    Molin, Daniel
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Kuusk, Thomas
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Brown, Peter de Nully
    Rigshosp, Dept Haematol, Copenhagen.
    Kamper, Peter
    Aarhus Univ Hosp, Dept Haematol, Aarhus C.
    Hjalgrim, Henrik
    Statens Serum Inst, Dept Epidemiol Res, Copenhagen; Rigshosp, Dept Haematol, Copenhagen.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Forskargrupper (Inst. för kvinnor och barns hälsa), Barnneurologi/Barnonkologi.
    Hjalgrim, Lisa Lyngsie
    Statens Serum Inst, Dept Epidemiol Res, Copenhagen; Rigshosp, Dept Paediat & Adolescent Med, Copenhagen.
    Hodgkin lymphoma in children, adolescents and young adults - a comparative study of clinical presentation and treatment outcome.2018Inngår i: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, nr 2, s. 276-282Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: Hodgkin lymphoma (HL) treatment protocols for children, adolescents and young adults traditionally differ, but the biological and clinical justification for this remains uncertain.

    Material and methods: We compared age-dependent clinical presentation and treatment and outcome for 1072 classical HL patients 0–24 years diagnosed in Denmark (1990–2010) and Sweden (1992–2009) in pediatric (n = 315, Denmark <15 years, Sweden <18 years) or adult departments (n = 757). Distribution of clinical characteristics was assessed with Pearson’s chi2-test and Mantel–Haenszel trend test. The Kaplan–Meier method was used for survival analyses. Hazard ratios (HR) were used to compare the different treatment groups and calculated using Cox regression.

    Results: Children (0–9 years) less often presented with advanced disease than adolescents (10–17 years) and young adults (18–24 years) (stage IIB-IV: children 32% vs. adolescents 50%, and adults 55%; p < .005). No variation in overall survival (OS) was seen between pediatric and adult departments or by country. Danish pediatric patients received radiotherapy (36%) less frequently than Swedish pediatric patients (71%) (p < .0001). Ten-year event-free survival (EFS) was lower among Danish pediatric patients (0–14 years) (0.79; 95% confidence interval (CI) 0.70–0.86) than among Swedish pediatric patients (0–17 years) (0.88; 95% CI 0.83–0.92), HR (1.93; 95% CI 1.08–3.46). A similar pattern was seen between adult patients in the two countries: Denmark 10-year EFS 0.85 (95% CI 0.81–0.88), Sweden 0.88 (95% CI 0.84–0.91), adjusted HR 1.51 (95% CI 1.03–2.22).

    Conclusion: Adolescents and young adults shared similar clinical presentation suggesting a rationale of harmonized treatment for these groups. Both adult and pediatric protocols provided high OS with no significant difference between the departments. The less frequent use of radiotherapy in Danish pediatric patients corresponded to a lower EFS, but comparable OS in all groups confirmed effective rescue strategies for the relapsing patients.

  • 32.
    Englund, Annika
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Hopstadius, Charlotte
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Enblad, Gunilla
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för radiologi, onkologi och strålningsvetenskap.
    Gustafsson, Göran
    Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Hodgkin lymphoma - a survey of children and adolescents treated in Sweden 1985-2009.2015Inngår i: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 54, nr 1, s. 41-8Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Abstract Background. Hodgkin lymphoma (HL) in children constitutes approximately 30% of all pediatric lymphomas in Sweden. The chance of cure is high, but the frequency of late effects has been considerable. Over recent years, efforts have been made to reduce treatment with maintained survival. Material and methods. All patients 0-17 years, identified in the Swedish Childhood Cancer Register as diagnosed between 1985 and 2009, were included. The material was analyzed using descriptive statistics and for survival estimates the Kaplan-Meier method was used. Results. Three hundred and thirty-four patients were identified during this time period. The median age was 14 years. Male sex was over-represented, especially in lower age groups and in nodular lymphocyte predominant Hodgkin lymphoma (NLPHL). In nodular sclerosis and in age group 15-17 years, female sex dominated. Most of the cases presented in stages I or II. B-symptoms were present in 38% of cHL, but only in 7% of NLPHL. The number of patients receiving radiotherapy has been significantly reduced during the period studied. The relapse rate in cHL was 10 ± 2% and in NLPHL 16 ± 7%. The relapse rate was significantly higher in cHL stage IIB compared to other stages in the same therapy group. In cHL 6% died, and in NLPHL 0%. The 5-, 10- and 20-year overall survival estimates in cHL were 96 ± 1%, 95 ± 1% and 90 ± 3%, respectively, with no significant difference when comparing different treatment regimens and time periods. The 5- and 10-year overall survival after relapse in cHL was 81 ± 8% and 75 ± 10%, respectively. Conclusion. During the period studied there is no indication of a decline in survival despite changes in treatment. Survival rates in Sweden are high, and even after relapse chances of cure are high. We were not able to identify any characteristics specific for the group of patients that did not survive.

  • 33.
    Englund, Annika
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Molin, Daniel
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Enblad, Gunilla
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Karlén, Jonas
    Karolinska Inst, Dept Womens & Childrens Hlth, Stockholm, Sweden.
    Glimelius, Ingrid
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Experimentell och klinisk onkologi.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Amini, Rose-Marie
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för immunologi, genetik och patologi, Klinisk och experimentell patologi.
    The role of tumour-infiltrating eosinophils, mast cells and macrophages in Classical and Nodular Lymphocyte Predominant Hodgkin Lymphoma in children2016Inngår i: European Journal of Haematology, ISSN 0902-4441, E-ISSN 1600-0609, Vol. 97, nr 5, s. 430-438Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVES: To study Hodgkin lymphoma (HL) microenvironment in a Swedish paediatric population and its relation to clinical parameters.

    METHODS: Tumour tissue from classical HL (cHL) (n=87) and nodular lymphocyte predominant HL (NLPHL) (n=11) was investigated for Epstein-Barr Virus (EBV) and analysed for eosinophils, mast cells and macrophages.

    RESULTS: In cHL, EBV positivity was more common in low age (p<0.001) and in mixed cellularity (MC) (p<0.001). Higher mast cell infiltration was seen in stage III-IV (p<0.001), and with presence of B-symptoms (p=0.01). Cases with high mast cell counts displayed higher erythrocyte sedimentation rate (ESR), lower haemoglobin and albumin levels. Higher macrophage infiltration was seen in stage III-IV (p=0.02) and there was elevated ESR and neutrophil count. All NLPHL cases were EBV negative, had lower rates of inflammatory cells and lower degree of inflammatory reaction in laboratory parameters. There was no difference in survival estimates with regard to infiltration of inflammatory cells.

    CONCLUSIONS: Higher levels of mast cells and macrophages in cHL tumours reflected the clinical presentation in laboratory parameters, B-symptoms and more advanced stages. NLPHL differs from cHL in numbers of inflammatory cells in the tumour, and in laboratory parameters. This article is protected by copyright. All rights reserved.

  • 34.
    Engvall, Gunn
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Mattsson, Elisabet
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Longitudinally derived psychosocial states among individuals diagnosed with cancer during adolescence up to four years after diagnosis2011Artikkel i tidsskrift (Fagfellevurdert)
  • 35.
    Hedström, Mariann
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap.
    Kreuger, Anders
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Nygren, Peter
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för onkologi, radiologi och klinisk immunologi.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap.
    Accuracy of assessment of distress, anxiety, and depression by physicians and nurses in adolescents recently diagnosed with cancer2006Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 46, nr 7, s. 773-9Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background. As staff members prioritize medical resources forpatients, it is imperative to find out whether their assessments ofpatients’ health status agree with patients’ assessments. The degree towhich physicians and nurses can identify the distress, anxiety, anddepression experienced by adolescents recently diagnosed withcancer was examined here. Procedure. Adolescents undergoingchemotherapy (13–19 years, n¼53), physicians (n¼48), and nurses(n¼53) completed a structured telephone interview, 4–8 weeksafter diagnosis or relapse, investigating disease and treatment-relateddistress, anxiety, and depression. Results. The accuracy of staffratings of physical distress could be considered acceptable.However, problems of a psychosocial nature, which were frequentlyoverestimated, were difficult for staff to identify. Staff underestimatedthe distress caused by mucositis and worry about missing schoolmore than they overestimated distress. These aspects were some ofthe most prevalent and overall worst according to the adolescents.Both physicians and nurses overestimated levels of anxiety anddepression. Nurses tended to show higher sensitivity than physiciansfor distress related to psychosocial aspects of distress, whilephysicians tended to show higher accuracy than nurses for physicaldistress. Conclusions. Staff was reasonably accurate at identifyingphysical distress in adolescents recently diagnosed with cancerwhereas psychosocial problems were generally poorly identified.Thus, the use of staff ratings as a ‘‘test’’ to guide specific supportseems problematic. Considering that the accuracy of staff ratingsoutside a research study is probably lower, identification of andaction taken on adolescent problems in relation to cancer diagnosisand treatment need to rely on direct communication.

  • 36.
    Hedström, Mariann
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap.
    Perceptions of distress among adolescents recently diagnosed with cancer2005Inngår i: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 27, nr 1, s. 15-22Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    With the goal of studying perceived distress among adolescents recently diagnosed with cancer, 56 adolescents were interviewed by telephone 4 to 8 weeks after diagnosis. The interviews included a structured interview guide, the Hospital Anxiety and Depression Scale, and the subscales Mental Health and Vitality from SF-36. "Losing hair" and "missing leisure activities" were identified as the most prevalent aspects of distress, whereas "missing leisure activities" and "fatigue" were rated with the highest levels of distress. "Worry about not getting well," "mucositis," "nausea," "pain from procedures and treatments," and "worry about missing school" were rated as the overall worst aspects by most adolescents. Twelve percent reached the cutoff score for potential clinical anxiety and 21% for potential clinical depression. Ratings of Mental Health and Vitality were lower than norm values. Prevalence of pain from procedures/treatments was higher among those who scored in the clinical range of depression, and more adolescents who were treated at a local hospital scored in the clinical range of anxiety. The findings show that ratings of prevalence, levels, and aspects perceived as the worst are not necessarily in accordance, that adolescents scoring in the clinical range of psychological distress are in the minority, and that the adolescents experience reduced physical and mental well-being.

  • 37.
    Hedén, Lena E.
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Effect of morphine in needle procedures in children with cancer2011Inngår i: European Journal of Pain, ISSN 1090-3801, E-ISSN 1532-2149, Vol. 15, nr 10, s. 1056-1060Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: The aim was to investigate whether children experience less fear, distress, and/or pain when they receive oral morphine vs. placebo before a needle is inserted in a subcutaneously implanted intravenous port when combined with topical anesthesia.

    Method: Fifty children 1-18 years of age who were treated in a pediatric oncology and hematology setting were included consecutively when undergoing routine needle insertion into an intravenous port. All children were subjected to one needle insertion following topical anesthetic (EMLA) application in this randomized, triple-blind, placebo-controlled study comparing orally administered morphine (n = 26) 0.25 mg/kg body weight with placebo (n = 24). The patients' fear, distress, and pain were reported by parents, nurses and the children themselves (if >= 7 years of age) on 0-100 mm Visual Analogue Scales. In addition, observational methods were used to measure distress and procedure pain.

    Results: No differences between the morphine and the placebo group were found with respect to age, weight, height, physical status, sex, weeks from diagnosis, or weeks from latest needle insertion. According to, parents, nurses, and children, oral morphine at a dose of 0.25 mg/kg body weight did not reduce fear, distress or pain compared with placebo.

    Conclusion: We could not reject the null hypothesis that there is no difference between the oral morphine and placebo groups assuming an effect size of 15 mm on VAS. Therefore it seems that oral morphine at 0.25 mg/kg does not give any additional reduction of fear, distress or pain compared with placebo when combined with topical anesthesia in pediatric patients undergoing subcutaneous port needle insertion, and would not be expected to be of any advantage for similar procedures such as venipuncture and venous cannulation when topical anesthesia is used.

  • 38.
    Hedén, Lena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Pöder, Ulrika
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Parents' Perceptions of Their Child's Symptom Burden During and After Cancer Treatment2013Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 60, nr S3, s. 42-42Artikkel i tidsskrift (Annet vitenskapelig)
  • 39.
    Hedén, Lena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Pöder, Ulrika
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Parents' Perceptions of Their Child's Symptom Burden During and After Cancer Treatment2013Inngår i: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 46, nr 3, s. 366-375Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Context

    Parents’ perceptions of their child’s symptom burden during and after cancer treatment.

    Objectives

    The aim is to describe parents’ perceptions of their child’s symptom burden during and after cancer treatment and to investigate whether parents’ perceptions vary with child characteristics and parent gender.

    Methods

    160 parents (49% fathers) of 89 children answered a modified version of the Memorial Assessment Symptom Scale (MSAS) 10-18 at six assessments from one week after the child’s diagnosis (T1) to 12-18 months after the end of successful treatment (T6).

    Results

    Feeling drowsy, pain, and lack of energy are initially the most prevalent symptoms, and less hair than usual the most prevalent symptom during treatment. Pain, feeling sad, and nausea are initially the most distressing symptoms. Pain is both prevalent and distressing throughout treatment. The child’s symptom burden decreases over time. There is no difference with regard to reported symptom burden between parents of a daughter or a son, or parents of a child over or under 7 years of age. Mothers’ and fathers’ assessments of the symptom number, total MSAS, and the subscales are associated, but mothers’ assessments are often higher than fathers’.

    Conclusion

    The prevalence and distress of symptoms and symptom burden decrease over time. However, even though the cancer is cured, feeling sad is reported as being prevalent and psychological distress is an issue. A dialogue between staff and the family about distressing symptoms and when they can be expected may increase acceptance and adaptation in children and parents during the disease trajectory.

  • 40.
    Hedén, Lena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Effect of high-dose paracetamol on needle procedures in children with cancer - a RCT2014Inngår i: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 103, nr 3, s. 314-319Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AIM: The aim was to investigate whether children experience less pain, fear and/or distress when they receive high-dose paracetamol compared with placebo, using a needle insertion in a subcutaneously implanted intravenous port as a model.

    METHODS: Fifty-one children ranging from 1 to 18 years of age being treated in a paediatric oncology setting were included consecutively when undergoing routine needle insertion into a subcutaneously implanted intravenous port. All children were subjected to one needle insertion following topical anaesthetic (EMLA) application in this double-blind, placebo-controlled RCT, comparing orally administered paracetamol (n = 24) 40 mg/kg body weight (max 2000 mg) with placebo (n = 27). The patients' pain, fear and distress were reported by parents, nurses and children (≥7 years of age) using 0- to 100-mm visual analogue scales (VAS). In addition, pain observation, procedure time and cortisol reduction were assessed.

    RESULTS: No differences between the paracetamol and the placebo group were found with respect to demographic characteristics. According to VAS reports, paracetamol did not reduce pain, fear and distress compared with placebo. Pain observation, cortisol reduction and procedure time did not differ between the study groups.

    CONCLUSION: Paracetamol provides no additive effect in reducing pain, fear and distress when combined with topical anaesthesia in children undergoing port needle insertion.

  • 41.
    Hedén, Lena
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Klinisk psykologi i hälso- och sjukvård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    The relationship between fear and pain levels during needle procedures in children from the parents’ perspective2016Inngår i: European Journal of Pain, ISSN 1090-3801, E-ISSN 1532-2149, Vol. 20, nr 2, s. 223-230Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Background: The primary objective was to determine the levels of and potential relationships between procedure-related fear and pain in children. Secondary objectives were to determine if there are associations between the child’s age and sex, diagnostic group, time since diagnosis, time since last needle insertion, cortisol levels and the parent’s fear level in relation to fear and pain.

    Methods: The child’s level of pain and fear was reported by parents on 0–100 mm visual analogue scales (VAS). One hundred and fifty-one children were included consecutively when undergoing routine needle insertion into a subcutaneously implanted intravenous port. All children were subjected to one needle insertion following topical anaesthesia (EMLA) application. The effect of the child’s age and sex, diagnostic group, time since diagnosis, time since last needle insertion, cortisol change levels and the parent’s fear level, on fear and pain levels was investigated with multiple regression analysis.

    Results: The needle-related fear level (VAS mean 28 mm) was higher than the needle-related pain level (VAS mean 17 mm) when topical anaesthesia is used according to parents’ reports (n = 151, p < 0.001). With fear as the dependent variable, age and pain were significantly associated and explained 33% of the variance, and with pain as the dependent variable, fear, parents’ fear and change in cortisol level were significantly associated and explained 38% of the variance.

    Conclusions: According to parents, children experienced more fear than pain during needle insertion when topical anaesthesia is used. Therefore, in addition to pain management, an extended focus on fearreducing interventions is suggested for needle procedures.

  • 42.
    Holm, Sara
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Sjukgymnastik.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Söderlund, Anne
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap.
    Pain in children and adolescents in primary care: chronic and recurrent pain is common2012Inngår i: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 101, nr 12, s. 1246-1252Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aim: 

    The aim of this study was to describe a paediatric primary care pain sample and examine associations between pain, health-related quality of life and disability.

    Methods: 

    The study design is descriptive and cross-sectional. One hundred and fifty-four consecutive children and adolescents between the ages of 8 and 16 seeking care for a pain-related conditions participated in this study. Pain characteristics, health-related quality of life and disability were investigated.

    Results: 

    Eighty-seven per cent of participants had a pain duration of 3 months or more, and almost half of the group studied had a pain duration of ≥ 12 months. The disability levels in the study group as a whole were low, with a mean FDI of 10.4 (SD 7.6). However, 35% of the study group had moderate disability levels and reported a mean FDI of 18.7 (SD 4.8). Single pain location was reported in 42%, whereas 58% had two or more pain locations. The children with multiple pain locations reported lower health-related quality of life and higher disability than children with single pain location.

    Conclusion:

    Paediatric pain patients in primary care consist partly of patients only slightly influenced by pain and partly of patients for whom pain has a great impact on their lives.

  • 43.
    Holm, Sara
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Åsenlöf, P
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap.
    Linton, S. J.
    Center of Health And Medical Psychology, School of Law, Psychology and Social Work, Örebro University, Sweden.
    Söderlund, A.
    School of Health Care and Social Welfare, Mälardalen University, Västerås, Sweden.
    Treating youth in pain: Comparing tailored behavioural medicine treatment provided by physical therapists in primary care with physical exercises.2016Inngår i: European Journal of Pain, ISSN 1090-3801, E-ISSN 1532-2149, Vol. 20, nr 4, s. 626-638Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    OBJECTIVES: To study the efficacy of tailored behavioural medicine treatment within a physical therapy framework.

    METHODS: The study was a randomized controlled study (RCT): tailored behavioural medicine treatment (EXT) delivered by physical therapists (PTs) was compared with exercise-based treatment (CT). Thirty-two adolescents (mean age 14.3 years) with persistent pain participated. Data on pain-related disability and school attendance (primary outcomes), pain intensity, catastrophizing, fear of movement and self-efficacy were collected.

    RESULTS: The pain-related disability measured by the Functional Disability Inventory (FDI) resulted in mean score change of EXT = -18 and CT = -11, respectively. A significant change within both groups was found (EXT p = 0.003, CT p = 0.001), and a large effect size for FDI between the conditions was demonstrated (AUC of 0.77). For school attendance post-treatment, no difference was found between conditions. For secondary outcomes, a significant improvement in pain intensity and pain catastrophizing was found for the EXT and self-efficacy for the CT groups but no statistically significant difference between the two conditions was detected. Caution should be given to the small sample size, as it may affect the interpretation and generalizability of the results.

    CONCLUSION: In this study, differences between tailored behavioural medicine treatment delivered by PTs and exercise-based treatment could not be demonstrated, although the effect size was large. Patients who received either treatment demonstrated significant changes over time in pain-related disability. The low number of participants and suboptimal tailoring of the psychological components may partly explain the failure to demonstrate differences between groups, and future studies are warranted.

  • 44.
    Holm, Sara
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Sjukgymnastik.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Åsenlöf, Pernilla
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap, Sjukgymnastik.
    Söderlund, Anne
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för neurovetenskap.
    How children and adolescents in primary care cope with pain and the biopsychosocial factors that correlate with pain-related disability2013Inngår i: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 102, nr 10, s. 1021-1026Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    Aim: To describe how children and adolescents cope with pain and to examine the biopsychosocial factors that correlate with pain-related disability (PRD) in a sample of primary care patients. Methods: This cross-sectional study included 133 patients, aged from eight to 16 years, who consulted primary care physiotherapy on a pain-related problem. Data were collected with the Functional Disability Inventory, the Pain Coping Questionnaire and a study-specific questionnaire. Linear multivariate regression analyses were applied to study the associations between PRD and (i) pain coping, (ii) individual-, pain-related and psychosocial variables. Results: Behavioural distraction, externalizing and catastrophizing explained 13% of the variance in PRD (regression model 1). In addition, pain intensity, worrying and the ability to reduce pain explained 21% of the variance in PRD (regression model 2). Conclusion: Variance in PRD was partly explained by pain intensity, worrying and ability to reduce pain and by behavioural distraction, externalizing and catastrophizing. Future prospective longitudinal studies are needed to identify possible additional variables explaining PRD, establish causality and the potential benefits of addressing these variables in interventions in primary care.

  • 45.
    Kamsvåg-Magnusson, Tove
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Thorsell-Cederberg, Jenny
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Svanberg, Anncarin
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för medicinska vetenskaper, Hematologi.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Arvidson, Johan
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Mellgren, Karin
    Department of Pediatrics, Institute for Clinical Sciences, University of Gothenburg, Gothenburg, Sweden.
    Toporski, Jacek
    Department of Clinical Sciences, Pediatric Oncology and Hematology, University of Lund, Lund, Sweden.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa.
    Parents and children's perceptions of distress related to oral mucositis during haematopoietic stem cell transplantation2014Inngår i: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 103, nr 6, s. 630-636Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    AimOral mucositis is a common and debilitating side effect of haematopoietic stem cell transplantation. Our study investigated parents' and children's experiences of oral mucositis treatment and whether the parents' perceptions accurately reflected the children's views. MethodsWe analysed 71 questionnaires completed by the parents of children who had undergone haematopoietic stem cell transplantation, together with 38 questionnaires completed by children who were 7 years of age or over. ResultsThe parent proxy and child self-reports showed good to excellent agreement. For example, 86% of the parents and 83% of the children reported oral pain and 44% of the parents and 47% of the children reported difficulty swallowing often or very often. The majority of the parents (61%) were satisfied with the pain treatment that had been given to their child. However, the treatment provided for oral mucositis was not altogether consistent. ConclusionOral mucositis affected the majority of the children undergoing haematopoietic stem cell transplantation, causing considerable pain and discomfort. The parent proxy reports proved to be reliable and are an important supplement to child self-reports on symptoms related to oral mucositis. But there is a clear need to establish more evidence-based care for children suffering from oral mucositis.

  • 46. Koscielniak, E.
    et al.
    Dantonello, T.
    Blank, B.
    Seitz, G.
    Leuschner, I.
    Kazanowska, B.
    Ladenstein, R.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Niggli, F.
    Bielack, S.
    Hallmen, E.
    Klingebiel, T.
    Prognosis of Children and Adolescents with Soft Tissue Ewing Tumors (STET) Treated in 3 Consecutive, Prospective Studies of the Cooperative Weichsteilsarkom Studiengruppe (CWS)2014Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 61, s. S117-S117Artikkel i tidsskrift (Annet vitenskapelig)
  • 47. Koscielniak, E.
    et al.
    Dantonello, T.
    Kazanowska, B.
    Ladenstein, R.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Niggli, F.
    Leuschner, I.
    Schuck, A.
    Klingebiel, T.
    Treatment of relapsed rhabdomyosarcoma - Experience of the CWS Study Group2013Inngår i: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 49, nr Suppl. 2, s. S47-S47Artikkel i tidsskrift (Annet vitenskapelig)
  • 48.
    Koscielniak, E.
    et al.
    Olgahosp Klinikum Stuttgart, Paediat Oncol Haematol, Stuttgart, Germany..
    Fuchs, J.
    Univ Klinikum Tubingen, Paediat Surg & Urol, Tubingen, Germany..
    Seitz, G.
    Univ Klinikum Tubingen, Paediat Surg & Urol, Tubingen, Germany..
    Leuschner, I.
    Univ Klinikum Schleswig Holstein, Paidopathol, Kiel, Germany..
    Scheer, M.
    Olgahosp Klinikum Stuttgart, Paediat Oncol Haematol, Stuttgart, Germany..
    Sparber-Sauer, M.
    Olgahosp Klinikum Stuttgart, Paediat Oncol Haematol, Stuttgart, Germany..
    Kazanowska, B.
    Suprareg Ctr Paediat Oncol Cape Hope, Paediat Haematol Oncol & BMT, Wroclaw, Poland..
    Ladenstein, R.
    St Anna Childrens Hosp, Childrens Canc Res Inst, Vienna, Austria..
    Ljungman, Gustaf
    Childrens Univ Hosp, Paediat Haematol & Oncol, Uppsala, Sweden..
    Niggli, F.
    Kinderspital, Paediat Oncol, Zurich, Switzerland..
    Bielack, S.
    Olgahosp Klinikum Stuttgart, Paediat Oncol Haematol, Stuttgart, Germany..
    Muenter, M.
    Katharinenhosp Klinikum Stuttgart, Radiooncol, Stuttgart, Germany..
    von Kalle, T.
    Olgahosp Klinikum Stuttgart, Paediat Radiol, Stuttgart, Germany..
    Hallmen, E.
    Olgahosp Klinikum Stuttgart, Paediat Oncol Haematol, Stuttgart, Germany..
    Klingebiel, T.
    Childrens Univ Hosp, Paediat Oncol Haematol & Hemostasis, Frankfurt, Germany..
    Prognosis of Children with Localized Rhabdomyosarcoma (RMS) of Genitourinary Regions (GU) Treated in 5 Prospective Studies of the Cooperative Weichsteilsarkom Studiengruppe (CWS)2016Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 63, s. S29-S30Artikkel i tidsskrift (Fagfellevurdert)
  • 49. Koscielniak, E.
    et al.
    Kosztyla, D.
    Dantonello, T.
    Kube, S.
    Kazanowska, B.
    Ladenstein, R.
    Niggli, F.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    Bielack, S.
    Leuschner, I.
    Schuck, A.
    Report of the CWS 2002P Study: Treatment Results for Soft Tissue Sarcomas (STS) in Childhood and Adolescence2013Inngår i: Pediatric Blood & Cancer, ISSN 1545-5009, E-ISSN 1545-5017, Vol. 60, nr S3, s. 32-32Artikkel i tidsskrift (Annet vitenskapelig)
  • 50.
    Lindahl Norberg, Annika
    et al.
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Pöder, Ulrika
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Vårdvetenskap. Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Ljungman, Gustaf
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för kvinnors och barns hälsa, Pediatrik.
    von Essen, Louise
    Uppsala universitet, Medicinska och farmaceutiska vetenskapsområdet, Medicinska fakulteten, Institutionen för folkhälso- och vårdvetenskap, Psykosocial onkologi och stödjande vård.
    Objective and subjective factors as predictors of post-traumatic stress symptoms in parents of children with cancer: a longitudinal study2012Inngår i: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 7, nr 5, s. e36218-Artikkel i tidsskrift (Fagfellevurdert)
    Abstract [en]

    BACKGROUND:

    Parents of children with cancer report post-traumatic stress symptoms (PTSS) years after the child's successful treatment is completed. The aim of the present study was to analyze a number of objective and subjective childhood cancer-related factors as predictors of parental PTSS.

    METHODS:

    Data were collected from 224 parents during and after their child's cancer treatment. Data sources include self-report questionnaires and medical records.

    RESULTS:

    In a multivariate hierarchical model death of the child, parent's perception of child psychological distress and total symptom burden predicted higher levels of PTSS. In addition, immigrants and unemployed parents reported higher levels of PTSS. The following factors did not predict PTSS: parent gender, family income, previous trauma, child's prognosis, treatment intensity, non-fatal relapse, and parent's satisfaction with the child's care.

    CONCLUSIONS:

    Although medical complications can be temporarily stressful, a parent's perception of the child's distress is a more powerful predictor of parental PTSS. The vulnerability of unemployed parents and immigrants should be acknowledged. In addition, findings highlight that the death of a child is as traumatic as could be expected.

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