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  • 1. Bränström, R
    et al.
    Arrelöv, B
    Gustavsson, Catharina
    Department of Clinical Neuroscience, Division of Insurance Medicine, Karolinska Institutet, Stockholm, Sweden.
    Kjeldgård, L
    Ljungquist, T
    Nilsson, G H
    Alexanderson, K
    Sickness certification at oncology clinics: perceived problems, support, need for education and reasons for certifying unnecessarily long sickness absences2014In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 23, no 1, p. 89-97Article in journal (Refereed)
    Abstract [en]

    Physicians' work with sickness certifications is an understudied field. The aims of this study were to gain knowledge of experiences concerning the sickness certification process among physicians working at oncology clinics. In 2008, all physicians working in Sweden (n = 36 898) were sent a questionnaire concerning sick-listing practices. All respondents working at an oncology clinic (n = 428) were included in the current study. Most of the physicians had sickness certification consultations at least weekly (91.3%). More than one fifth (22.3%) reported that they worked at a clinic with a workplace policy regarding the handling of sickness certification and 61.1% reported receiving at least some support in such cases from their immediate manager. Issuing unnecessary long sickness certificates were related to experiencing delicate interactions with patients and to lack of time. To a moderate degree, further competence was requested regarding: different types of compensation in the social insurance system, responsibilities of the Social Insurance Agency and employers, and sickness insurance rules. The large majority of physicians working in oncology reported regularly having consultations involving sickness certification. Overall, they reported few problems, low level of need for more competence regarding sickness certification, and low frequency of issuing sickness absences for longer periods than necessary.

  • 2.
    DeMarinis, Valerie
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Theology, Department of Theology, The Social Sciences of Religion, Psychology of Religions.
    Barsky, A.J.
    Antin, J.H.
    Chang, G.
    Health psychology and distress after haematopoietic stem cell transplantation2009In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 18, no 1, p. 57-63Article in journal (Refereed)
    Abstract [en]

    The purpose of this study of 23 adult haematopoietic stem cell transplantation (HSCT) recipients is to compare the presence of post-transplantation depression disorders by gender and to compare the outcomes among those with and without depressive disorders using a health psychology focus. This cross-sectional pilot study of mid-term survivors took place in hospital outpatient clinic. Main outcome measures are depression disorders, health status (Short Form-12) and health anxiety. Female survivors had a higher rate of depression disorders, but those with treated depressive disorders were similar to those without depression on health-related quality of life and health anxiety. Neither patient age nor time since HSCT was associated with depressive disorders. A health psychology approach may enhance management of HSCT survivorship.

  • 3.
    Einarsson, Sandra
    et al.
    Umea Univ, Dept Food & Nutr, Umea, Sweden.
    Laurell, Göran
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    Ehrsson, Ylva Tiblom
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Otolaryngology and Head and Neck Surgery.
    Experiences and coping strategies related to food and eating up to two years after the termination of treatment in patients with head and neck cancer2019In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 28, no 2, article id e12964Article in journal (Refereed)
    Abstract [en]

    The purpose was to describe how patients with head and neck cancer experience and cope with difficulties related to food and eating up to two years after the termination of treatment. One hundred and thirty-five patients were followed with thematically structured interviews. The patients' responses of nutritional issues were categorised using similarities and differences technique. In the analysis, six categories emerged describing the process of eating and drinking from the end of treatment up to two years after treatment: The constant battle-eating and drinking over time, Food alterations and nutritional support-both pros and cons, Standing aside and not joining in when eating together with others, Finding ways to cope and to make the new a part of everyday life, Relationships and social support-hindrances and facilitators, and Longing for "normality." Results imply that patients struggle with physiological, psychological and social aspects related to food and eating, and use coping mechanisms to facilitate their eating problems. The best practice for rehabilitation and follow-up must be established in order to meet the multifaceted needs of head and neck cancer survivors.

  • 4.
    Ekedahl, MarieAnne
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Theology, Department of Theology.
    Wengström, Yvonne
    Departmet of Neurobiology, Care science and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Caritas, spirituality and religiosity in nurses' coping2010In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 19, p. 530-537Article in journal (Refereed)
  • 5.
    Ekedahl, MarieAnne
    et al.
    Uppsala University, Disciplinary Domain of Humanities and Social Sciences, Faculty of Theology, Department of Theology.
    Wengström, Yvonne
    Department of Neurobiology, Care science and Society, Division of Nursing, Karolinska Institutet, Huddinge.
    Coping processes in a multidisciplinary healthcare team : a comparison of nurses in cancer care and hospital chaplains2008In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 17, no 1, p. 42-48Article in journal (Refereed)
  • 6.
    Fröjd, Camilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Is doctors' ability to identify cancer patients' worry and wish for information related to doctors' self-efficacy with regard to communicating about difficult matters?2006In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 15, no 4, p. 371-378Article in journal (Refereed)
    Abstract [en]

    The aims were to investigate whether: (A) doctors' ability to identify patients' worry about prognosis/wish for information about disease and treatment is related to doctors' self-efficacy with regard to communicating about difficult matters and patients' satisfaction with a consultation/hope to live a good life in spite of the disease; and (B) patients and doctors agree on how much worry/wish for information a patient experiences/wishes. Sixty-nine patients with carcinoid and 11 doctors participated. Ability to identify worry/wish for information was estimated by posing questions to doctors/patients concerning how much worry/information a patient experienced/wished during a consultation. Doctors' self-efficacy was measured by nine questions, patients' satisfaction and hope by two questions. When doctors show good ability to identify wish for information, they report higher self-efficacy (t = 3.5, d.f. = 67, P < 0.001) than when they show less good ability. Patients finding the consultation very satisfying meet doctors reporting higher self-efficacy than patients finding the consultation satisfying (t = 2.26, d.f. = 65, P < 0.05). Doctors fail to identify patients who report less worry/wish more information than the average patient. The findings underscore the importance of further enhancing doctors' self-efficacy with regard to communicating about difficult matters and ability to identify patients who are less worried/wish more information than the average patient.

  • 7.
    Godskesen, Tove
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Fernow, Josepine
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Eriksson, Stefan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, article id e12937Article in journal (Refereed)
    Abstract [en]

    Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information avail‐able to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the docu‐ments were misleading in part. Furthermore, the descriptions provided almost no in‐formation about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple meas‐ures like readability testing can be useful as an indicator of text quality.

  • 8.
    Godskesen, Tove
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal University College.
    Hansson, Mats G.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Hope for a cure and altruism are the main motives behind participation in phase 3 clinical cancer trials2015In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 24, no 1, p. 133-141Article in journal (Refereed)
    Abstract [en]

    It is necessary to carry out randomised clinical cancer trials (RCTs) in order to evaluate new, potentially useful treatments for future cancer patients. Participation in clinical trials plays an important role in determining whether a new treatment is the best therapy or not. Therefore, it is important to understand on what basis patients decide to participate in clinical trials and to investigate the implications of this understanding for optimising the information process related to study participation. The aims of this study were to (1) describe motives associated with participation in RCTs, (2) assess if patients comprehend the information related to trial enrolment, and (3) describe patient experiences of trial participation. Questionnaires were sent to 96 cancer patients participating in one of nine ongoing clinical phase 3 trials at the Department of Oncology, Uppsala University Hospital in Sweden. Eighty-eight patients completed the questionnaire (response rate 92%); 95% of these were patients in adjuvant therapy and 5% participated in clinical trials on palliative care. Two main reasons for participation were identified: personal hope for a cure and altruism. Patients show adequate understanding of the information provided to them in the consent process and participation entails high patient satisfaction.

  • 9.
    Godskesen, Tove
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics. Ersta Sköndal University College.
    Kihlbom, Ulrik
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Lifestyle and rehabilitation in long term illness. Univ Bergen, Dept Global Publ Hlth & Primary Care, Bergen, Norway.
    Silen, Marit
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
    Nygren, Peter
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Immunology, Genetics and Pathology, Experimental and Clinical Oncology.
    Differences in trial knowledge and motives for participation among cancer patients in phase 3 clinical trials2016In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 25, no 3, p. 516-523Article in journal (Refereed)
    Abstract [en]

    While participants in clinical oncology trials are essential for the advancement of cancer therapies, factors decisive for patient participation have been described but need further investigation, particularly in the case of phase 3 studies. The aim of this study was to investigate differences in trial knowledge and motives for participation in phase 3 clinical cancer trials in relation to gender, age, education levels and former trial experience. The results of a questionnaire returned from 88 of 96 patients (92%) were analysed using the Mann-Whitney U-test. There were small, barely relevant differences in trial knowledge among patients when stratified by gender, age or education. Participants with former trial experience were less aware about the right to withdraw. Male participants and those aged ≥65 years were significantly more motivated by a feeling of duty, or by the opinions of close ones. Men seem more motivated than women by external factors. With the awareness that elderly and single male participants might be a vulnerable group and participants with former trial experience are less likely to be sufficiently informed, the information consent process should focus more on these patients. We conclude that the informed consent process seems to work well, with good results within most subgroups.

  • 10.
    Hedén, Lena
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Ljungman, Gustaf
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health.
    Randomized interventions for needle procedures in children with cancer2009In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 18, no 4, p. 358-363Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to examine whether children experience less fear, distress and pain connected to a routine needle insertion in an intravenous port when subjected to an intervention: blowing soap bubbles or having a heated pillow vs. standard care. Twenty-eight children, 2-7 years, cared for at a paediatric oncology unit, undergoing a routine needle insertion in an intravenous port were included consecutively. All children were subjected to two needle insertions; at the first they received standard care, and at the second standard care + a randomized intervention. Parents and nurses assessed children's fear, distress and pain on 0-100 mm visual analogue scales. According to parents' report, children experienced less fear when subjected to intervention vs. standard care reported by parents (P < 0.001). Children also experienced less fear (P < 0.05) and distress (P < 0.05) when subjected to standard care + blowing soap bubbles vs. standard care (n = 14), and less fear when subjected to standard care + heated pillow vs. standard care (P < 0.05). Nurses' reports did not show any differences for standard care + intervention vs. standard care. Blowing soap bubbles or having a heated pillow is more effective than standard care in reducing children's fear and distress in needle procedures, according to parents' report.

  • 11.
    Larsson, G.
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Haglund, K.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Distress, quality of life and strategies to 'keep a good mood' in patients with carcinoid tumours: patient and staff perceptions2003In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 12, no 1, p. 46-57Article in journal (Refereed)
    Abstract [en]

    Patients with carcinoid tumours have reported a relatively good health-related quality of life (HRQoL) (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30, EORTC QLQ-C30), and low levels of anxiety and depression (Hospital Anxiety and Depression Scale, HADS). The aim was to test the validity of these results. Data were gathered through interviews with 19 patients and 19 staff. Participants were asked about disease and treatment related distress, important aspects of quality of life and strategies to 'keep a good mood'. Patients were interviewed about themselves and staff were interviewed about a certain patient. Data were analysed by content analysis. Identified aspects of distress and quality of life were referred to an emotional, a physical and a social dimension. Most aspects of distress were of a physical character whereas most aspects of quality of life were of a social character. Several aspects of emotional distress not included in the EORTC QLQ-C30 and/or the HADS were identified.

  • 12.
    Larsson, Gunnel
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Janson, Eva Tiensuu
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Anemia in patients with midgut carcinoid, treated with alpha interferon: effects by erythropoietin treatment on the perceived quality of life2008In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 17, no 2, p. 200-204Article in journal (Refereed)
    Abstract [en]

    One important side effect from alpha interferon is depression of bone marrow function and studies have shown that patients with carcinoid tumours treated with alpha interferon suffers from fatigue and impaired physical functions. The aim of this pilot study was to investigate if treatment with erythropoietin (EPO) could have a positive effect on self-rated quality of life (QoL). Eighteen patients with midgut carcinoid treated with alpha interferon were included in the study. There were statistical significant increases in haemoglobin (Hb) levels between baseline and 4 months, between baseline and 8 months as well as between baseline and 2-year follow-up. No EPO related side effects were reported. There were improvements of more than 10 points in self-rated QoL-issues related to anaemia. Even though the analysis did not reveal any statistically significant relation between the observed increase in Hb levels and self-rated QoL, this pilot study has increased the knowledge about benefits, doses and frequency of EPO treatment in patients with midgut carcinoid suffering from interferon related anaemia.

  • 13.
    Larsson, Gunnel
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care. Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Sjödén, Per Olow
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Are importance-satisfaction discrepancies with regard to ratings of specific health-related quality-of-life aspects valid indicators of disease- and treatment-related distress among patients with endocrine gastrointestinal tumours?2007In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 16, no 6, p. 493-499Article in journal (Refereed)
    Abstract [en]

    The aims of this study were to investigate: (1) whether ratings of importance of, satisfaction with, and symptom/function of specific health-related quality-of-life (HRQoL) aspects are related, and (2) whether an importance–satisfaction discrepancy with regard to ratings of a specific HRQoL aspect is a valid indicator of distress. Eighty-three patients with endocrine gastrointestinal tumours completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and answered questions about importance of, satisfaction with, and symptom/function of 12 HRQoL aspects. The patients reported a relatively high HRQoL in terms of physical, emotional and social function. Most of the HRQoL aspects were considered as important for a good quality of life. High satisfaction was related to fewer symptoms and a better function. Patients who assigned a higher importance than satisfaction rating to an aspect reported a lower quality of life for the same aspect. The findings suggest that importance–satisfaction discrepancies are valid indicators of patient distress and illustrate the importance of asking patients not only about frequency and level of symptoms, but also about importance of and satisfaction with when assessing patient quality of life.

  • 14.
    Larsson, Maria
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Ljung, Lena
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Johansson, Birgitta
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Radiology, Oncology and Radiation Science, Oncology.
    Health Related Quality of Life in Advanced Non Small Cell Lung Cancer: Correlates and Comparisons to Normative Data2012In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 21, no 5, p. 642-649Article in journal (Refereed)
    Abstract [en]

    The aim was to describe self-reported HRQoL in patients with advanced non small cell lung cancer (NSCLC)  and to investigate the associations to stage of disease, age, gender, weight loss and performance status. Further, the study aimed to compare patients’ health related quality of life with that of the Swedish general population. Data on HRQoL were collected within a multi-centre randomised controlled trial. A total of 334 patients were included between 1998 and 2001. The EORTC QLQ-C30 and QLQ-LC13 were used to assess HRQoL. HRQoL data for comparison with the Swedish population were derived from a random sample of the Swedish population. Patients reported a markedly impaired HRQoL compared to the normal population. There were statistically and clinically significant differences with regard to almost all QLQ-C30 functional and symptom scales. Global Health Status, Physical Functioning, Role Functioning and Emotional Functioning were markedly deteriorated. The most prominent symptoms were Dyspnoea, Fatigue, Coughing, Insomnia, Appetite Loss and Pain. A low performance status, younger age, female gender and a more advanced disease were independently associated with a worse HRQoL. Additional studies are required to gain increased insight into this seriously ill group of patients and their need of supportive care.

  • 15.
    Lindahl Norberg, Annika
    et al.
    Karolinska institutet, Inst för kvinnors och barns hälsa.
    Steneby, S
    Experiences of parents of children surviving brain tumour: a happy ending and a rough beginning.2009In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 18, no 4, p. 371-80Article in journal (Refereed)
    Abstract [en]

    Despite a large number of studies reporting distress in parents after successfully completed cancer treatment of a child, few have explored the influence of current matters. The objective of this study was to explore parents' perceptions of post-treatment influence of childhood brain tumour. Semi-structured individual interviews were performed with the parents of seven children who had completed treatment for various types of brain tumour. Through inductive thematic analysis five key themes were derived, including 16 sub-themes. The key themes relate to: (1) survivor needs related to training and everyday life activities, where parents invested a large amount of time and commitment; (2) the everyday family life was restricted: family life in focus; (3) parenting role and routines had become more demanding; (4) for the parent as an individual daily routine as well as the view of life had changed; and (5) parental concerns and worries regarding the survivor's current and future well-being were amplified. Findings of the study suggest that the parents in the study struggle with the consequences of tangible strain, as well as existential challenges. Follow-up support should include updated information about the child's present state, and how it can be improved, as well as coaching when assisting and supporting the child.

  • 16.
    Mårtensson, Gunilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Carlsson, Maria
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Lampic, Claudia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Do nurses and cancer patients agree on cancer patients' coping resources, emotional distress and quality of life?2008In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 17, no 4, p. 350-360Article in journal (Refereed)
    Abstract [en]

    The present study examines differences, associations and agreement in cancer patients' and their nurses' ratings of cancer patients' coping resources, emotional distress and quality of life. The study sample includes 90 individual patient-nurse pairs. The patient and nurse in each pair independently completed the Cancer Behaviour Inventory, the Hospital Anxiety and Depression Scale and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being. The results indicate a distinct pattern in which nurses overestimate patients' emotional distress and underestimate patients' coping resources and quality of life. A nurse who overestimated a patient's emotional distress and underestimated his/her resources for handling the situation was also likely to underestimate the patient's quality of life. Patient-nurse pairs who demonstrated consistent agreement differed from remaining pairs in that they had a larger percentage of nurses with advanced education and previous responsibility for their patients' care and in that they had higher frequencies of patients who had previously received care at the ward > , 5 days. Nurses caring for patients with cancer should be aware of the risk of making systematic misjudgements of patients' status. Increased attention to patients' internal resources may improve nurses' ability to make correct assessments and plan for individualized care.

  • 17.
    Mårtensson, Gunilla
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Carlsson, Marianne
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Lampic, Claudia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Are cancer patients whose problems are overestimated by nurses less satisfied with their care?2010In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 19, no 3, p. 382-392Article in journal (Refereed)
    Abstract [en]

    The main aim of the present study was to investigate whether patient-nurse dis/agreement concerning cancer patients' situation was of importance to patients' satisfaction with care. Another aim was to describe cancer patients' satisfaction with care and to investigate its relationship to cancer patients' emotional distress. A consecutive sample of individual patient-nurse pairs (n = 82) was recruited and followed during 3 days. Each pair consisted of a cancer patient newly admitted to an oncological/haematological ward and a nurse responsible for that patient's care. The known phenomenon of nurse overestimation of cancer patients' problems did not appear to be of importance to patients' satisfaction with care. However, patients whose depressive problems were underestimated by nurses were significantly less satisfied with the care they received. Furthermore, anxious and depressed patients were less satisfied with some aspects of the care they received than were the remaining patients. Although the patients' ratings and experiences of received care indicated a high degree of satisfaction, the patients also expressed negative experiences of care. To improve the quality of cancer care, nurses need to improve their ability to identify cancer patients' emotional distress if they are to satisfy patients' needs.

  • 18. Nilsson, J.L.G.
    et al.
    Andersson, K.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Bergkvist, A.
    Björkman, Ingeborg
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Health Services Research.
    Brismar, A.
    Moen, J.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Pharmacy, Department of Pharmacy.
    Refill adherence to repeat prescriptions of cancer drugs to ambulatory patients2006In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 15, no 3, p. 235-7Article in journal (Refereed)
    Abstract [en]

    The objective was to study the refill adherence among ambulatory patients with prescribed cancer drugs. The study was based on copies of repeat prescriptions, which were collected at three large Swedish pharmacies during the last 3 months of 2004. Copies of 141 repeat prescriptions were analysed. There was no statistical significant difference between the number of patients with undersupply of cancer drugs (i.e. <80% of prescribed cancer drugs) and that of patients with undersupply of all other drugs, or between the number of patients with oversupply of cancer drugs (>120% of prescribed cancer drugs) and that of patients with oversupply of all other drugs. Undersupply of drugs was found among 14% of the patients. The median treatment gap for these patients was 39 (range 29–49 days) per 98–100 days of prescribed treatment time, meaning that the undersupply leads to treatment gaps that may jeopardize their therapeutic outcome. It is reasonable to expect that more seriously ill patients would be adherent to prescribed medication, and consequently that cancer patients would have high adherence. However, our data show that cancer patients on oral long-term treatment have a non-adherence similar to that of patients in general.

  • 19.
    Pöder, Ulrika
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    von Essen, Louise
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Psychosocial oncology and supportive care.
    Perceptions of support among Swedish parents of children on cancer treatment: a prospective, longitudinal study2009In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 18, no 4, p. 350-357Article in journal (Refereed)
    Abstract [en]

    Given the important role of parents in ensuring the well-being of their children, their perceived support is crucial for their own, as well as their child's well-being. Perceptions of support were investigated among 214 Swedish parents of 115 children on cancer treatment. Parents answered questions about their satisfaction with their child's care (The Comprehensive Satisfaction with Care, Short Form, Version 4.0 (CASC SF 4.0)) and about their need, opportunity and benefit to talk to health professionals, significant others and other people. Data were collected over telephone at 1 week (T1), 2 (T2) and 4 (T3) months after the child's diagnosis. Parents reported at least moderate satisfaction with all aspects of their child's care, and highest satisfaction with the technical care. Less than half of the parents who reported a need to talk with a psychologist at T1-T3 reported having had the opportunity to do so. The care organization, doctors' interpersonal skills, information provision and availability, nurses' information provision and the availability of psychologists are areas within Swedish paediatric oncology care for which improvement most obviously is needed.

  • 20.
    Sundbom, Magnus
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Upper Abdominal Surgery. Univ Hosp, Dept Surg, Uppsala, Sweden..
    Ekfjord, Lena
    Univ Hosp, Dept Surg, Uppsala, Sweden..
    Willman, Maria
    Univ Hosp, Dept Physiotherapy, Uppsala, Sweden..
    Hedberg, Jakob
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Upper Abdominal Surgery. Univ Hosp, Dept Surg, Uppsala, Sweden..
    Randeniye, Stephan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Upper Abdominal Surgery.
    Christensen, Marianne
    Univ Hosp, Dept Clin Nutr, Uppsala, Sweden..
    Kildal, Morten
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Plastic Surgery. Univ Hosp, Dept Clin Nutr, Uppsala, Sweden..
    Patient-reported experience and outcome measures during treatment for gastroesophageal cancer2020In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 29, no 2, article id e13200Article in journal (Refereed)
    Abstract [en]

    Objective

    Gastroesophageal cancer has high mortality, and continuous assessment of patient‐reported data is salient for optimisation of supportive care. We aimed to evaluate our multidisciplinary concept with respect to patient‐reported variables.

    Methods

    At diagnosis and later during the treatment, three areas of patient‐reported measures were evaluated: the given information and care, fatigue (Multidimensional Fatigue Inventory [MFI‐20]), dysphagia (Ogilvie dysphagia score) and weight loss.

    Results

    Of 130 outpatients, planned for a surgical procedure and given a contact nurse (CN), 106 responded. During treatment, 81% of the patients were satisfied with their CN. The given information was considered very good or good by >90% and easily understood. Half of the patients reported need for supportive care, which was rated good by 85%. All dimensions of the MFI‐20 test, except mental fatigue, worsened during the treatment period. At diagnosis, 61% of the patients experienced eating problems, leading to 7% weight loss. Although dysphagia improved, weight loss reached 13% at the end of treatment.

    Conclusion

    A multidisciplinary concept can be of value in giving appropriate and understandable information, leading to high satisfaction with the provided care. However, as fatigue and weight loss increased during the treatment period, patients need structured multidisciplinary support.

  • 21.
    Svanberg, Anncarin
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Haematology.
    Öhrn, Kerstin
    Birgegård, Gunnar
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Haematology.
    Five year follow-up of survival and relapse in patients who received cryotherapy during high dose chemotherapy for stem cell transplantation shows no safety concerns2012In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 21, no 6, p. 822-828Article in journal (Refereed)
    Abstract [en]

    We have previously published a randomised controlled study of the efficacy of cryotherapy in preventing acute oral mucositis after high-dose chemotherapy for stem cell transplantation. The present study is a 5-year follow-up safety study of survival in these patients. In the previously published study oral cryotherapy (cooling of the oral cavity) during high-dose chemotherapy significantly reduced mucositis grade and opiate use in the treated group. All patients were followed up for at least 5 years with regard to relapse and death rates. Baseline data, transplant complications and mucositis data were compared. Significantly more patients (25/39) who received oral cryotherapy were alive after 5 years compared to 15/39 in the control group (P= 0.025). Relapse rates were similar. The only baseline difference was a lower proportion of patients in complete remission at transplantation in the control group (6 vs. 13, P= 0.047). This 5-year follow-up study gave no support for safety concerns with cryotherapy.

  • 22.
    Von Essen, Louise
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Larsson, Gunnel
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Öberg, Kjell
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences.
    Sjödén, Per-Olow
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    'Satisfaction with care': associations with health-related quality of life and psychosocial function among Swedish patients with endocrine gastrointestinal tumours2002In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 11, no 2, p. 91-99Article in journal (Refereed)
    Abstract [en]

    The aims of this study were to investigate ‘satisfaction with care’ and its possible relationships to hope, health-related quality of life, anxiety and depression. Eighty-five patients with endocrine gastrointestinal (GI) tumours responded to questionnaires a few days after a hospital visit. ‘Satisfaction with care’ was assessed by the Comprehensive Assessment of Satisfaction with Care (CASC), health-related quality of life by the EORTC QLQ C-30 and anxiety and depression by the Hospital Anxiety and Depression Scale (HADS). Patients’ highest satisfaction scores were obtained for ‘general satisfaction’ and ‘nurses’ and doctors’ technical skills’. The lowest satisfaction was expressed for ‘doctors’ interpersonal skills’, ‘nurses’ communication skills’ and ‘care organization’. Patients reporting a clinically relevant level of anxiety were less satisfied with several care aspects than those reporting less anxiety. Satisfaction with ‘nurses’ communication skills’ and ‘doctors’ interpersonal skills’ was associated with several aspects of health-related quality of life, whereas satisfaction with ‘doctors’ information’, ‘nurses’ technical skills’ and ‘general satisfaction’ was not. Satisfaction with psychosocial aspects of care is related to the psychosocial function of patients with endocrine GI tumours.

  • 23.
    Winterling, Jeanette
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Sidenvall, Birgitta
    Glimelius, Bengt
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Oncology, Radiology and Clinical Immunology.
    Nordin, Karin
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Expectations for the recovery period after cancer treatment – a qualitative study2009In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 18, no 6, p. 585-593Article in journal (Refereed)
    Abstract [en]

    The aim was to explore what expectations patients have concerning the   recovery period after completed curative cancer treatment and the   degree to which these expectations were realized slightly more than 1   year later. A purposeful sample of 16 patients was selected from a   larger study and those patients were interviewed 16 months after   treatment completion. The interviews were analysed using the   phenomenographic method. Patients' expectation for their recovery   period was generally to become well, but they often lacked plans for   how to recover. If the recovery period was perceived as 'smooth'   expectations were always met. However, if the period was perceived as   'tough' expectations were often unfulfilled, but most of these patients   were satisfied with their current life anyway owing to positive changes   and it was only a small proportion of the patients that still felt   unwell. Even though most of the patients had managed to adjust well to   the situation slightly more than 1 year after completed treatment,   several patients had not been aware of how tough recovery could be and   requested further support from the healthcare system.

1 - 23 of 23
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