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  • 1. Anclair, M
    et al.
    Hovén, E
    Lannering, B
    Boman, K K
    Parental fears following their child's brain tumor diagnosis and treatment2009In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 26, no 2, 68-74 p.Article in journal (Refereed)
    Abstract [en]

    The objective of this study is to portray the illness-related threats experienced by parents of children after the diagnosis of central nervous system (CNS) tumor. Parents were asked to rate the extent to which they experienced a set of specific fears related to their child's brain tumor and its treatment. Outcomes for parents of CNS tumor patients (n = 82) were compared with those of reference parents of patients treated for acute lymphoblastic leukemia (n = 208). The fears about an illness recurrence and the late effects of treatment were most prominent among parents of CNS tumor patients. For 7 out of 11 kinds of fear, parents of CNS tumor patients expressed a stronger fear than the reference group. More than a quarter of the parents of children treated for CNS tumors feared a complete decline of the child. Parents of CNS tumor patients experience relatively heightened cancer related fears in several domains. The fear of devastating consequences felt by one fourth of parents signals the need of individualized psychological support and information at diagnosis and follow-up to facilitate parental coping with the posttreatment situation.

  • 2. Boman, K
    et al.
    Bodegård, G
    Long-term coping in childhood cancer survivors: influence of illness, treatment and demographic background factors2000In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 89, no 1, 105-11 p.Article in journal (Refereed)
    Abstract [en]

    In 30 survivors of childhood cancer, long-term psychological coping with experience of disease and treatment was studied in relation to factors associated with illness, treatment and demographic background. Coping was assessed in a prior study, in which three groups of varying levels of coping where delineated (good, 40%; intermediate, 33%; poor, 27%, coping). The present study showed that poor individual coping was related to diagnosis, a shorter time of continuous complete remission, more severe illness and treatment impairments, and lower scores on a test of intellectual abilities. In addition, a longer time of treatment tended to be followed by poorer coping. However, no association was found for gender, parents' occupational level, age at illness onset, neuro-cranial irradiation, irradiation dose (total) or age at investigation. A tentative path-analysis was executed, displaying a model for the relationships between medical and demographic background variables, and for their influence on coping. It was concluded that a complex of factors--associated particularly with severity of disease and treatment--appears to be related to, and affects, coping with the illness experience. Patients' long-term coping with their illness trauma is most likely determined by multiple factors. Intellectual capabilities are related to coping.

  • 3. Boman, K
    et al.
    Bodegård, G
    Psychological long-term coping with experience of disease and treatment in childhood cancer survivors.1995In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 84, no 12, 1395-402 p.Article in journal (Refereed)
    Abstract [en]

    Childhood cancer, although cured, may have long-term psychological consequences for the adult survivor. The outcome of patients' coping with the illness and treatment experience was assessed in relation to a theoretical model describing optimal long-term coping with a potential psychic trauma of this nature. Thirty young adult childhood cancer survivors were studied. The average age at diagnosis was 8 years, and at evaluation 22 years. The average time since diagnosis was 13 years. The evaluations of coping were carried out independently by two psychologists, who rated material from semistructured in-depth interviews. By statistical cluster analysis three clusters were produced that could be interpreted as exhibiting "good," "intermediate" and "poor" coping, containing 40, 33, and 27%, respectively, of the total group. Overall cluster differences were statistically significant. Profile analysis revealed statistical stability and internal homogeneity in the good coping cluster and the poor coping cluster.

  • 4. Boman, K
    et al.
    Bodegård, G
    Psychological long-term coping with experience of disease and treatment in childhood cancer survivors.1997In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 86, no 9, 1026-7 p.Article in journal (Refereed)
  • 5. Boman, K K
    et al.
    Hovén, E
    Anclair, M
    Lannering, B
    Gustafsson, G
    Health and persistent functional late effects in adult survivors of childhood CNS tumours: a population-based cohort study2009In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 45, no 14, 2552-61 p.Article in journal (Refereed)
    Abstract [en]

    Survivors of central nervous system (CNS) tumours are particularly vulnerable to tumour- and treatment-related disability. We present the incidence of specific and overall functional and health-related late effects in a national adult survivor cohort. Diagnostic subgroups at particular risk for persistent sequels are identified. Data collection targeted 708 eligible >18 years old survivors, 708 parent proxies and 1000 general population controls. Functional disability including sensory and cognitive impairment, emotional status and pain was assessed using the Health Utilities Index Mark 2/3 (HUI2/3). Survivors and controls, and diagnostic subgroups were contrasted to identify the general and relative risk for late effects by sub-diagnosis. Survivors had persistent late effects in sensation, mobility, self-care and cognition. Deficits in these domains indicated clinically important disability in overall health, although indices of emotion and pain were unaffected compared to controls. Late effects tended to aggravate with time, and female survivors had poorer health. Oligodendroglioma, mixed/unspecified glioma, intracranial germ cell tumour and medulloblastoma survivors had poorest overall health. Least late effects were found for other specified/unspecified CNS tumours (including meningeoma and nerve sheath tumours), and for astrocytoma. An impact on educational, vocational and family-related outcomes, and higher utilisation of social insurance or government subsidies validated health-related sequelae in adulthood. Comparisons with controls confirm persistent disability in multiple functional domains in adult CNS tumour survivors. The heightened proportion of survivors presenting severe disability is a factor that specifically differentiates survivors from controls, although diagnostic subgroups differ significantly regarding the amount and severity of late effects.

  • 6. Boman, Krister K
    Assessing psychological and health-related quality of life (HRQL) late effects after childhood cancer2007In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 96, no 9, 1265-8 p.Article in journal (Refereed)
  • 7. Boman, Krister K
    Impact of prior traumatic life events on parental early stage reactions following a child's cancer2013In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, ISSN 1932-6203, Vol. 8, no 3Article, review/survey (Refereed)
    Abstract [en]

    Background: In pediatric oncology, effective clinic–based management of acute and long–term distress in families calls forinvestigation of determinants of parents’ psychological response to the child’s cancer. We examined the relationshipbetween parents’ prior exposure to traumatic life events (TLE) and the occurrence of posttraumatic stress symptoms (PTSS)following their child’s cancer diagnosis. Factors mediating the TLE–PTSS relationship were analyzed.Methodology: The study comprised 169 parents (97 mothers, 72 fathers) of 103 cancer diagnosed children (median age: 5,9years; range 0.1–19.7 years). Thirty five parents were of immigrant origin (20.7%). Prior TLE were collated using astandardized questionnaire, PTSS was assessed using the Impact of Events–Revised (IES–R) questionnaire covering intrusion,avoidance and hyperarousal symptoms. The predictive significance of prior TLE on PTSS was tested in adjusted regressionmodels.Results: Mothers demonstrated more severe PTSS across all symptom dimensions. TLE were associated with significantlyincreased hyperarousal symptoms. Parents’ gender, age and immigrant status did not significantly influence the TLE–PTSSrelationship.Conclusions: Prior traumatic life–events aggravate posttraumatic hyperarousal symptoms. In clinic–based psychologicalcare of parents of high–risk pediatric patients, attention needs to be paid to life history, and to heightened vulnerability toPTSS associated with female gender.

  • 8. Boman, Krister K
    et al.
    Bodegård, Göran
    Life after cancer in childhood: social adjustment and educational and vocational status of young-adult survivors2004In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 26, no 6, 354-62 p.Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To evaluate the long-term social effect of illness and its treatment on young-adult survivors of pediatric cancer by addressing a selection of general social adjustment criteria.

    METHODS: In a cross-sectional case-control study, 30 young-adult survivors of childhood cancer were compared with (1). controls with no history of serious illness, matched by sex, age, and geographic area of residence, and (2). general population norms on the subject of educational and vocational factors, habitation, family/partner relationships, parenthood, and leisure activities.

    RESULTS: The educational status of survivors was similar to that of controls, although a smaller proportion of the patients expressed concrete plans for future vocational or educational advancement. Survivors had less frequently entered higher education compared with general population norms. A longer duration of treatment was related to a lower estimated socioeconomic level, and poor psychological coping with the illness experience was associated with the fact that they were still living with their parents, a shorter education, and a lower socioeconomic level.

    CONCLUSIONS: The social, vocational, and educational adjustment of relapse-free survivors from childhood cancer appears as only moderately, if at all, negatively affected by the illness and treatment history. However, the treatment intensity and particularly the survivors' coping with their illness experience may influence their ability to achieve long-term social goals. These findings suggest that special attention should be given to matters concerning education and partner relationships at long-term follow-up of pediatric cancer patients.

  • 9. Boman, Krister K
    et al.
    Hörnquist, Lina
    De Graaff, Lisanne
    Rickardsson, Jenny
    Lannering, Birgitta
    Gustafsson, Göran
    Disability, body image and sports/physical activity in adult survivors of childhood CNS tumors: population-based outcomes from a cohort study2013In: Journal of Neuro-Oncology, ISSN 0167-594X, E-ISSN 1573-7373, Vol. 112, no 1, 99-106 p.Article in journal (Refereed)
    Abstract [en]

    Childhood CNS tumor survivors risk health and functional impairments that threaten normal psychological development and self-perception. This study investigated the extent to which health and functional ability predict adult survivors' body image (BI) and self-confidence regarding sports and physical activity. The study cohort covered 708 eligible ≥ 18 year old CNS tumor survivors, and data from 528 (75 %) were analyzed. Disability was estimated using the Health Utilities Index™ Mark2/3, a multidimensional self-report instrument. Physical self-confidence in terms of BI and sports/physical activity-related self-confidence (SPAS) were assessed using the BI and the Sports/Athletics modules of a standardized self-report assessment scale. In adjusted regression models, global health and functional status (GHFS) predicted BI (B = 0.94, 95 % CI 0.69-1.19) and SPAS (B = 0.79, 95 % CI 0.55-1.04). Emotion and pain, and to a lesser degree cognition, speech and vision disability, were associated with poorer BI and SPAS. Gender, sub-diagnosis, and time since diagnosis influenced the relationship between health status and physical self-confidence outcomes. Females had poorer GHFS, BI and SPAS than males. Decreased health and functional ability following childhood CNS cancer intrudes on physical self-confidence, with females being at heightened risk for both disability and negative self-confidence. Identified disability and gender-related risk calls for a follow-up plan that integrates treatment of psychological sequelae in lifetime monitoring of childhood CNS tumor survivors to restore and protect self-image and self-confidence, essential mental health correlates. An expanded plan should recognize the need for such services, optimizing life-long quality of survival for CNS tumor survivors.

  • 10. Boman, Krister K.
    et al.
    Lindblad, Frank
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience, Child and Adolescent Psychiatry.
    Hjern, Anders
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Long-term outcomes of childhood cancer survivors in Sweden: a population-based study of education, employment, and income2010In: Cancer, ISSN 0008-543X, E-ISSN 1097-0142, Vol. 116, no 5, 1385-1391 p.Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Studies of different national populations were indispensable for estimating the impact of illness-related disability on social outcomes in adult childhood cancer survivors. The effects of childhood cancer on educational attainment, employment, and income in adulthood in a Swedish setting were studied. METHODS: The study population was a national cohort of 1.46 million Swedish residents, including 1716 survivors of childhood cancer diagnosed before their 16th birthday, followed up in 2002 in registries at >25 years of age. Main outcomes were educational attainment, employment, and net income. Markers of persistent disability were considered, and outcomes were analyzed with multivariate linear and logistic regression models adjusted for age, sex, and socioeconomic indicators of the childhood households. RESULTS: Non-central nervous system (CNS) cancer survivors had similar education, employment, and income as the general population in adjusted models, whereas survivors of CNS tumors more often had no more than basic (< or =9 years) education (relative risk [RR], 1.80 [95% confidence interval (95% CI), 1.45-2.23]), less often attained education beyond secondary school (RR, 0.69 [95% CI, 0.58-0.81]), and less often were employed (RR, 0.85 [95% CI, 0.77-0.94]). Predicted net income from work was lower in CNS tumor survivors (P <.001) than in the general population, even after the exclusion of individuals who received economic disability compensation. CONCLUSIONS : CNS tumor survivors had poorer social outcomes compared with the general population, whereas outcomes for survivors of other childhood cancers were similar to the general population. Established late effects highlighted the importance of improved, safer pediatric CNS tumor treatment protocols and surveillance that identified individual needs for preventive and remedial measures.

  • 11. Boman, Krister K
    et al.
    Viksten, Jonas
    Kogner, Per
    Samuelsson, Ulf
    Serious illness in childhood: the different threats of cancer and diabetes from a parent perspective2004In: Journal of Pediatric Surgery Case Reports, ISSN 0022-3476, E-ISSN 2213-5766, Vol. 145, no 3, 373-9 p.Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: To compare the incidence of disease-related distress symptoms in parents of children with cancer and diabetes.

    STUDY DESIGN: A total of 675 parents of patients with cancer, patients with diabetes, and control subjects were assessed for 11 distress symptom clusters. Patient and control parent mean differences were tested by 2-tailed t tests; illness groups were compared by means of analysis of variance. Distress variations as a function of time since diagnosis were examined by regression analysis.

    RESULTS: The distress levels of patient parents exceeded those of control parents for global distress ( P <.0001) and for most symptom subcategories. Distress levels of parents of patients with cancer (CP) significantly exceeded those of parents of patients with diabetes (DP) in anxiety ( P <.0001), physical and psychologic distress ( P <.0001), depression ( P <.005), and loneliness ( P <.05). Levels in DP matched those of CP in uncertainty, loss of control/the patient, self-esteem, disease-related fear, and sleep disturbances. Distress levels were lower in CP most distant in time from diagnosis, whereas DP showed a reversed trend.

    CONCLUSIONS: Parental distress patterns in childhood illness depend on illness type and time passed since diagnosis. Symptom profiles verify the need for psychosocial attention at the initial shock after the cancer diagnosis and indicate long-term consequences for many parents. In pediatric diabetes, the persistence or intensification of distress over time is of specific clinical relevance.

  • 12. Boman, Krister
    et al.
    Lindahl, Annika
    Karolinska institutet, Inst för kvinnors och barns hälsa.
    Björk, Olle
    Disease-related distress in parents of children with cancer at various stages after the time of diagnosis.2003In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 42, no 2, 137-46 p.Article in journal (Refereed)
    Abstract [en]

    This study evaluates and describes disease-related distress in parents, with particular focus on the association between the time elapsed since the child's cancer diagnosis and a number of indicators of distress. In a cross-sectional design, 264 mothers and fathers of children with various malignancies completed a multidimensional questionnaire focusing on 11 illness-specific and general indicators of distress. Parents were assessed from 4 weeks to 14 years after the child's diagnosis, and age of children at onset of illness ranged from newly born to 21 years (mean approximately 6 years). The levels of distress related to loss of control, self-esteem, anxiety, depression, sleep disturbances, and psychological and physical distress were lower among parents for whom a longer period of time had elapsed from the time of diagnosis. However, the time elapsed could not explain all of the variation in these stress reactions, or any of the variation in uncertainty, disease-related fear and loneliness. The child's age at diagnosis and treatment situation at assessment were surpassed by time elapsed since diagnosis as predictors of variance in parental distress. The pattern observed indicates the presence of disease-related distress even years after the completion of medical treatment. The findings point to the need for research to identify parents at particular risk of suffering long-term harmful consequences from the prolonged stress of parenting a child with cancer. The necessity of longitudinal studies to evaluate the proportion of acute stress in relation to chronic or cumulative parental stress is emphasized.

  • 13. Ghaffarpour, N
    et al.
    Petrini, B
    Svensson, L A
    Boman, K
    Wester, T
    Claesson, G
    Patients with lymphatic malformations who receive the immunostimulant OK-432 experience excellent long-term outcomes2015In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 104, no 11, 1169-73 p.Article in journal (Refereed)
    Abstract [en]

    AIM: Sclerotherapy is the primary treatment for lymphatic malformations. The aim of this study was to evaluate the long-term outcome in patients with lymphatic malformations treated with the immunostimulant OK-432 as a sclerosant.

    METHODS: Between 1998 and 2013, we enrolled 131 of 138 eligible patients treated with OK-432 for lymphatic malformations in a retrospective study. The malformations were categorised according to the International Society for the Study of Vascular Anomalies. The outcome was assessed with a clinical examination and a questionnaire.

    RESULTS: The lymphatic malformations were localised to the head/neck (60%), the trunk (20%) and the extremities (6%) or involved with more than one region (14%). Patients with microcystic (10%), macrocystic (21%) and mixed lymphatic malformations (69%) underwent a median number of three, two and two injection treatments, respectively. The median age at the first injection was 3.4 years. Good or excellent clinical outcomes were seen in 70% of the patients. The number of injections, previous treatment and lesion localisation, but not time to follow-up and cyst size, predicted the clinical outcome.

    CONCLUSION: OK-432 treatment resulted in a successful outcome in 70% of patients with lymphatic malformations. The long-term outcome was comparable to the short-term outcome.

  • 14. Gudmundsdottir, Eyglo
    et al.
    Schirren, Maria
    Boman, Krister K
    Psychological resilience and long-term distress in Swedish and Icelandic parents' adjustment to childhood cancer2011In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 50, no 3, 373-80 p.Article in journal (Refereed)
    Abstract [en]

    AIM: Studies of parental reactions to a child's cancer have traditionally been carried out within the framework of psychiatry and psychopathology. We studied the significance of individual resource factors strengthening parents' resilience to long-term cancer-related distress, a focus that has rarely been used.

    PARTICIPANTS AND METHODS: The two-nation Nordic sample included 398 parents; 190 of whom had experienced a child's cancer, and 208 reference parents. We studied the sense of coherence (SOC) using the SOC-13 questionnaire. For assessing distress reactions we used a primarily illness-specific 11-dimensional Parental Psychosocial Distress in Cancer (PPD-C) self-report questionnaire developed for use with parents of childhood cancer patients, and the General Health Questionnaire (GHQ). Resilience was defined as absence of/less severe distress.

    RESULTS: Low SOC was significantly associated with more severe distress in all dimensions of the PPD-C and GHQ. The protective effect of SOC was indicated by it being most negatively related to general psychiatric symptoms, physical and psychological stress symptoms, anxiety and depression. The influence of SOC varied with parents' gender, showing a stronger modifying influence among mothers. Mothers and fathers also differed in their utilisation of professional psychosocial support when confronted with the child's cancer.

    CONCLUSION: Parental resilience to cancer-related distress varies with identifiable strength factors. A strengths-oriented approach helps in understanding parental adjustment to childhood cancer. In order to counteract psychological vulnerability, addressing resilience instead of pathology helps to identify parents at risk and in need of professional support when faced with a child's cancer.

  • 15. Gudmundsdóttir, Eygló
    et al.
    Hörnquist, Lina
    Boman, Krister K
    Psychological outcomes in Swedish and Icelandic parents following a child's cancer-in the light of site-related differences2013In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 21, no 6, 1637-45 p.Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study determined the incidence of disease-related distress symptoms in parents from two treatment sites: a large specialized childhood cancer (CC) center in Sweden and a smaller pediatric unit in Iceland. The two groups were compared by considering differences in center type and care organization.

    METHODS: Participants were 328 parents of 211 CC patients, in or off treatment. Illness-specific distress was assessed using the multi-dimensional Parental Psychosocial Distress in Cancer (PPD-C) questionnaire. General psychiatric symptoms were assessed using the General Health Questionnaire (GHQ-12). Swedish and Icelandic groups were compared and outcomes studied with regard to site characteristics. Parents in the general population served as a reference group.

    RESULTS: Distress outcomes in both clinical groups exceeded the levels of the reference group. Systematic differences were found between the parent groups, Icelandic parents scoring higher on 5 of the 11 distress subscales of the PPD-C and in a majority of the illness-specific domains. A tendency towards more negatively affected general mental health was found in Swedish parents (GHQ, p = 0.059).

    CONCLUSIONS: Distress outcomes exceeding those of the comparison group were found in both clinical groups. Significant distress differences were found between the Swedish and the Icelandic parents. Analysis of the outcomes indicates that center type and related differences in patient influx rate and local organization of care are viable explanations of the findings. Methods are proposed for enhancing family care at small centers in order to compensate for conditions associated with burden on parents of the child's cancer.

  • 16.
    Hjern, Anders
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Lindblad, Frank
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Neuroscience.
    Boman, Krister K.
    Disability in adult survivors of childhood cancer: a Swedish national cohort study2007In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 25, no 33, 5262-5266 p.Article in journal (Refereed)
    Abstract [en]

    PURPOSE: We studied the effects of childhood or adolescent cancer and cancer treatment on disability as indicated by persistent aid needs in adult life. PATIENTS AND METHODS: A group of 2,503 survivors of childhood cancer diagnosed before their 16th birthday were studied with data from registers in a national cohort of 1.91 million Swedish residents. Disability indicators were created from information in national registers about income (sickness pension, handicap allowance), personal assistance, and family situation in 2002. Multivariate logistic regression on the log scale was used to estimate relative risk (RR) ratios. RESULTS: A total of 7.6% of survivors received handicap allowance indicating permanent disability, including brain tumors (14.0%), other solid tumors (6.3), and leukemias/lymphomas (2.9%), compared with 0.6% in the general population. Twenty-six percent of survivors of CNS tumor and 10% of survivors of solid tumors had at least one indication of a disability. Younger age at diagnosis suggested a higher risk for disability. CNS tumor survivors had an RR of 10.7 (95% CI, 9.3 to 12.8) for having at least one disability indication compared with the noncancer population, whereas leukemia and lymphoma survivors had an RR of 3.0, and survivors of other cancers had an RR of 3.8. Survivors of CNS tumor only had an increased RR for living in the parental household (RR = 1.6; 95% CI, 1.4 to 1.9). CONCLUSION: Childhood cancer survivors more often have persistent needs of supportive measures provided by community and/or the parental household. The survivors of CNS tumors were at particular risk, indicating a need of safer treatment protocols, and tailored follow-up, prevention, and rehabilitation to address this persistent social disability.

  • 17. Hovén, Emma
    et al.
    Anclair, Malin
    Samuelsson, Ulf
    Kogner, Per
    Boman, Krister K
    The influence of pediatric cancer diagnosis and illness complication factors on parental distress2008In: Journal of pediatric hematology/oncology (Print), ISSN 1077-4114, E-ISSN 1536-3678, Vol. 30, no 11, 807-14 p.Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: We investigated how primary diagnosis and risk for diagnosis-related complication factors influence parental distress after a child's cancer diagnosis.

    METHODS: We used a model in which "complicated childhood cancers" were grouped into 1 category, after identifying a set of potentially influential illness complication variables. This category included central nervous system tumors, acute myeloid leukemia, and bone tumors. Parental distress in that category (n=144) was compared with distress after acute lymphoblastic leukemia (n=177) in the child. In addition, comparisons were made between parents of the specific diagnosis groups. A multidimensional questionnaire assessing symptoms of distress was used.

    RESULTS: Parents in the complicated cancer category showed significantly heightened disease-related fear, anxiety, depression, loss of control, late effects-related uncertainty, and poorer self-esteem compared with parents of children with acute lymphoblastic leukemia. Significantly heightened parental distress was associated with the child having been treated with cranial irradiation.

    CONCLUSIONS: Relatively heightened distress in parents of children with complicated cancer is influenced by diagnosis-related factors like an intricate prediagnostic phase, and uncertainty about late effects. Heightened vulnerability to distress signals exceptional needs for support and information among parents of children treated for central nervous system or bone tumors.

  • 18. Hovén, Emma
    et al.
    Lannering, Birgitta
    Gustafsson, Göran
    Boman, Krister K.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Information needs of survivors and families after childhood CNS tumor treatment: a population-based study2017In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, ISSN 0284-186XArticle in journal (Refereed)
    Abstract [en]

    Background: This study examines information needs and satisfaction with provided informationamong childhood central nervous system (CNS) tumor survivors and their parents.Material and methods: In a population-based sample of 697 adult survivors in Sweden, 518 survivorsand 551 parents provided data. Information needs and satisfaction with information were studied usinga multi-dimensional standardized questionnaire addressing information-related issues.Results: Overall, 52% of the survivors and 48% of the parents reported no, or only minor, satisfactionwith the extent of provided information, and 51% of the survivors expressed a need for more informationthan provided. The information received was found useful (to some extent/very much) by 53%,while 47% did not find it useful, or to a minor degree only. Obtaining written material was associatedwith greater satisfaction and usefulness of information. Dissatisfaction with information was associatedwith longer time since diagnosis, poorer current health status and female sex. The survivors experiencedunmet information needs vis-a-vis late effects, illness education, rehabilitation and psychologicalservices. Overall, parents were more dissatisfied than the survivors.Conclusion: These findings have implications for improvements in information delivery. Information inchildhood CNS tumor care and follow-up should specifically address issues where insufficiency wasidentified, and recognize persistent and with time changing needs at the successive stages of longtermsurvivorship.

  • 19.
    Hovén, Emma
    et al.
    Karolinska Institutet, Department of Women's and Children's Health, Childhood Cancer Research Unit, Stockholm, Sweden.
    Lannering, Birgitta
    University of Gothenburg, Department of Clinical Sciences, Pediatric Oncology, Gothenburg, Sweden.
    Gustafsson, Göran
    Karolinska Institutet, Department of Women's and Children's Health, Childhood Cancer Research Unit, Stockholm, Sweden.
    Boman, Krister K
    Karolinska Institutet, Department of Women's and Children's Health, Childhood Cancer Research Unit, Stockholm, Sweden.
    Persistent impact of illness on families of adult survivors of childhood central nervous system tumors:: a population-based cohort study2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 1, 160-167 p.Article in journal (Refereed)
    Abstract [en]

    Objective

    This study aims to determine the long-term impact on families of adult survivors of childhood central nervous system tumors. Illness-related family consequences were studied in relation to modifying determinants.

    Methods

    In a population-based cohort of parents of 697 survivors 18 years and older, 551 parents provided data. The impact of cancer on the families was evaluated in four domains using the Impact on Family Scale (economic situation, personal burden, social life, sibling impact). The results were analyzed in relation to survivors' health assessed using the Health Utilities Index™, parent satisfaction with information about illness and treatment, and perceived health-care needs of their child.

    Results

    Despite an established mild-to-moderate impact on the group level, outcomes provided evidence of substantial cancer-related family consequences even once the child had reached adulthood. About one fifth of parents reported psychological and financial difficulties exceeding the cutoff limit for a significant impact still ≥5 years after diagnosis. A stronger total family impact was associated with poorer health of survivors (F[3,302] = 56.65, p < 0.001), and unmet informational - (F[3,231] = 14.06, p < 0.001) and health-care needs (t218 = 5.31, p < 0.001). The impact was unrelated to survivors' age at follow-up and time since diagnosis.

    Conclusions

    Adverse cancer-related consequences affect a considerable portion of families of childhood survivors of central nervous system tumor, even after reaching adulthood. The impact is aggravated by lasting sequelae and perceived shortcomings of long-term follow-up, factors that partly are avoidable. Improved clinical follow-up should particularly address illness information and long-term health-care needs to reduce the impact on families of survivors suffering from chronic health conditions.

  • 20.
    Hovén, Emma
    et al.
    Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
    Lannering, Birgitta
    Department of Pediatrics, The Queen Silvia Children’s Hospital, University Hospital, University of Gothenburg, Gothenburg, Sweden.
    Gustafsson, Göran
    Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
    Boman, Krister K
    Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden.
    The met and unmet health care needs of adult survivors of childhood central nervous system tumors: A double-informant, population-based study2011In: Cancer, ISSN 0008-543X, E-ISSN 1097-0142, Vol. 117, no 18, 4294-4303 p.Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    The purpose of the current study was to examine the persistent health care needs (HCNs) of adult survivors of childhood central nervous system tumors.

    METHODS:

    In this population-based study, 526 of 679 eligible survivors and 550 parents provided data. Survivors' HCNs were assessed using a questionnaire covering 4 domains: Medical Care, care coordination and communication (Care Coordination), Illness Education, and Psychosocial Services. Needs were categorized as no need, met need, and unmet need. Outcomes were analyzed specifically in relation to survivors' functional late effects as assessed using the Health Utilities Index Mark 2/3.

    RESULTS:

    Approximately 40% of survivors experienced their HCNs as exceeding the supposed general population average, and 41% had a current HCN that was unmet. The most common unmet need concerned the Psychosocial Services domain (reported by 40%), followed by a lack of Illness Education (35%), Care Coordination (22%), and Medical Care (15%). Survivors experiencing functional late effects had greater HCNs, and a greater percentage of unmet needs. Agreement between survivor-reported and parent proxy-reported HCNs was satisfactory, whereas agreement for survivors' unmet HCNs ranged from poor to satisfactory.

    CONCLUSIONS:

    Findings based on reliable double-informant data demonstrated that a considerable percentage of adult survivors report unmet HCNs, with female sex, younger age at diagnosis, and indications of disability and poor health status comprising significant risk factors. Issues critical for improved, comprehensive, long-term follow-up care were identified. Addressing these issues adequately in clinical follow-up extending into adulthood would likely improve the quality of comprehensive care for this patient group.

  • 21. Hörnquist, Lina
    et al.
    Rickardsson, Jenny
    Lannering, Birgitta
    Gustafsson, Göran
    Boman, Krister K
    Altered self-perception in adult survivors treated for a CNS tumor in childhood or adolescence: population-based outcomes compared with the general population2015In: Neuro-Oncology, ISSN 1522-8517, E-ISSN 1523-5866, Vol. 17, no 5, 733-40 p.Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Survivors of pediatric CNS tumors are at risk for persistent tumor/treatment-related morbidity, physical disability and social consequences that may alter self-perception, vital for self-identity, mental health and quality of survival. We studied the long-term impact of childhood CNS tumors and their treatment on the self-perception of adult survivors and compared outcomes with those of the general population.

    METHODS: The cohort included 697 Swedish survivors diagnosed with a primary CNS tumor during 1982-2001. Comparison data were randomly collected from a stratified general population sample. Survivors and general population individuals were compared as regards self-perception in 5 domains: body image, sports/physical activities, peers, work, and family, and with a global self-esteem index. Within the survivor group, determinants of impact on self-perception were identified.

    RESULTS: The final analyzed sample included 528 survivors, 75.8% of the entire national cohort. The control sample consisted of 995, 41% of 2500 addressed. Survivors had significantly poorer self-perception outcomes in domains of peers, work, body image, and sports/physical activities, and in the global self-perception measure, compared with those of the general population (all P < .001). Within the survivor group, female gender and persistent visible physical sequelae predicted poorer outcomes in several of the studied domains. Tumor type and a history of cranial radiation therapy were associated with outcomes.

    CONCLUSION: An altered self-perception is a potential late effect in adult survivors of pediatric CNS tumors. Self-perception and self-esteem are significant elements of identity, mental health and quality of survival. Therefore, care and psychosocial follow-up of survivors should include measures for identifying disturbances and for assessing the need for psychosocial intervention.

  • 22. Norberg, Annika Lindahl
    et al.
    Boman, Krister K
    Mothers and fathers of children with cancer: loss of control during treatment and posttraumatic stress at later follow-up2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 2, 324-329 p.Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    A child's cancer can lead to changes in parental role functioning, including loss of control. We studied the extent to which parental perceived loss of control during a child's cancer treatment predicted posttraumatic stress symptoms (PTSS) after completion of treatment.

    METHOD AND PARTICIPANTS:

    The sample of this longitudinal study included 62 parents (36 mothers and 26 fathers) of children currently in treatment for malignant disease (T1) and after completion of treatment (T2). Loss of control was assessed at T1 using a self-report measure, that is the loss of control module of the Parental Psychosocial Distress-Cancer questionnaire. PTSS were assessed at T2 using the Impact of Event Scale-Revised. Main analyses were carried out for mothers and fathers separately.

    RESULTS:

    The majority of the parents, 55% (n = 34), reported loss of control on more than half of the assessed domains. Only 5% (n = 3) reported no loss of control whatsoever. At T2, some degree of PTSS was reported by 89% (n = 55). These outcomes were similar for mothers and fathers. Loss of control at T1 predicted stronger PTSS at T2 primarily among mothers.

    CONCLUSION:

    The experience of loss of control during cancer treatment is a salient risk factor for later PTSS in mothers. The situational threat to the regular parental role is discussed as an explanation to this observation. Interventions should address informational needs, parent participation in care, and professional support to maintain a sense of control and functioning in their parental role.

  • 23.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Boman, Krister K
    Parent distress in childhood cancer: a comparative evaluation of posttraumatic stress symptoms, depression and anxiety.2008In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 47, no 2, 267-274 p.Article in journal (Refereed)
    Abstract [en]

    The aim was to assess symptoms consistent with posttraumatic stress (PTS; cognitive intrusions, avoidance, arousal) related to the child's illness, and generic distress (anxiety, depression) in parents of childhood cancer patients. Outcomes were compared to normative and relevant reference data, and analysed for their dependence on time passed since diagnosis. Swedish parents (266 mothers, 208 fathers) were recruited at two centres. Data from a clinical sample of posttraumatic stress disorder (PTSD) patients and parents of healthy children were used for comparison. The Impact of Events Scale (IES-R) was used for assessing PTS symptoms, and self-report scales for anxiety and depression. Elevated stress and generic distress varied as a function of time from diagnosis. Up to 12% of parents for whom >5 years had passed since diagnosis still reported equally, or more intrusive thoughts, avoidance and arousal when contrasted to patients suffering from PTSD. Parents of recently diagnosed children had more cancer-related intrusive thoughts than those of long-term survivors. Heightened anxiety and depression was most prominent in mothers and fathers up to 2.5 years after diagnosis. In conclusion, severe generic distress characterises the first years after diagnosis, and initially common PTS symptoms are found in a considerable portion of parents years after diagnosis. Clinically, attention should be paid to continuous parent support needs. Individual variation vis-à-vis distress vulnerability should be acknowledged, and presupposed gender differences avoided. When treatment situation asks the most of parents' collaboration, many are under pressure of severe stress.

  • 24.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Boman, Krister K
    Parents' perceptions of support when a child has cancer: a longitudinal perspective.2007In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 30, no 4, 294-301 p.Article in journal (Refereed)
    Abstract [en]

    Previous research has shown perceived social support to be important for maintaining psychological well-being. However, severe stress may influence a person's perception of the availability and value of support from others. In this prospective study, we investigated changes in subjectively perceived social support among parents of children with cancer. Furthermore, we examined the role of parent gender and emotional distress (anxiety and depression) in predicting change in perceived support. Fifty-one parents (29 mothers and 22 fathers) participated. Perceived support, anxiety, and depression were assessed with self-report questionnaires. Parents were examined on 2 occasions. The initial assessment was completed within the first 6 months of the child's cancer treatment. At the time of the follow-up assessment 12 to 24 months later, cancer treatment was completed for all patients. On a group level, parents reported significantly poorer perceived support at the second assessment. However, further examination showed that for one fourth of the group, perceived support was improved. Depressive symptoms during the child's treatment predicted decline in perceived support. Anxiety and gender were not predictive of a change in perceived support.A comprehensive pediatric care model should pay particular attention to parents with a tottering perception of social support. Furthermore, the findings underscore the importance of early psychosocial attention to avoid negative long-term consequences of depression. Being in the frontline of patient care, the pediatric oncology nurse plays an important role in identifying early parents at risk and in shaping parents' perception of support.

  • 25.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Lindblad, Frank
    Boman, Krister K
    Coping strategies in parents of children with cancer.2005In: Social Science and Medicine, ISSN 0277-9536, E-ISSN 1873-5347, Vol. 60, no 5, 965-75 p.Article in journal (Refereed)
    Abstract [en]

    This study examined 395 parents (224 mothers and 171 fathers) of children with cancer in Sweden in terms of coping, assessed using the Utrecht Coping List. The use of each of seven coping strategies among parents of children with cancer was compared with data from parents of children with no serious or chronic diseases. In addition, the relationship between coping strategies and anxiety/depression was examined. No differences in the frequency of using the seven coping strategies were found between the study group and the reference group. Neither did the use of coping strategies differ among parents of children with various types of cancer, nor among parents at various points in time after the child's cancer diagnosis. A more frequent use of active problem-focusing, and a less frequent use of avoidance behaviour and passive reaction pattern, was related to lower levels of anxiety and depression in parents of children with cancer and in reference parents. Analyses of parents of children at different time points after diagnosis and in different diagnostic groups indicated that contextual demands influence the relation between coping and anxiety/depression.

  • 26.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Lindblad, Frank
    Boman, Krister K
    Parental traumatic stress during and after paediatric cancer treatment.2005In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 44, no 4, 382-8 p.Article in journal (Refereed)
    Abstract [en]

    The objective was to cross-sectionally compare parents of children during (n = 175) and after (n = 238) cancer treatment regarding traumatic stress (intrusion, avoidance, arousal). In both groups, time since child's diagnosis ranged from one month to six years. Intrusion and arousal were more frequent in parents during ongoing treatment, although also reported by many parents after treatment. Stress was evaluated in relation to situational and demographic factors: Parents who had experienced a relapse did not differ from parents of non-relapsed children. Time since diagnosis was only weakly associated with stress. In the stage of completed treatment the risk for severe stress was elevated in parents with lower education and immigrant parents. Mothers reported somewhat higher levels of stress than fathers, although the findings were ambiguous. To conclude, many parents experience high levels of disease-related stress, even after successful treatment. The pattern of stress symptoms may vary according to educational level, ethnicity, and gender.

  • 27.
    Norberg, Annika Lindahl
    et al.
    Karolinska institutet, inst f kvinnors och barns hälsa.
    Lindblad, Frank
    Boman, Krister K
    Support-seeking, perceived support, and anxiety in mothers and fathers after children's cancer treatment.2006In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 15, no 4, 335-43 p.Article in journal (Refereed)
    Abstract [en]

    The objective was to examine the relationships between anxiety, the seeking of social support as a coping strategy, and perceived social support among mothers (n=103) and fathers (n=81) of children with successfully completed treatment for cancer. Assessments were done using self-report instruments. The mediating effect of perceived support on the relationship between social support-seeking and anxiety was evaluated through path analysis, and comparisons were done in order to evaluate effects of gender. For mothers and fathers alike, a positive relationship of moderate strength between support-seeking and perceived support was found. Anxiety was negatively related to support-seeking (mothers r=-0.22, p=0.025; fathers r=-0.21, p=0.063) as well as perceived support (mothers r=-0.55, p<0.001; fathers r=-0.41, p<0.001), although the relationship for support-seeking was weak. The path analysis showed that perceived support only to a minor extent could strengthen this association. The significance of support-seeking and perceived support was stronger for mothers than for fathers, as regards their association with anxiety. However, the patterns of interrelations were similar for mothers and fathers. In conclusion, parents' subjectively perceived support appears to be more important for anxiety regulation than their support-seeking coping. In clinical practice, individual variation should be acknowledged, and presumptions of general gender differences avoided.

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