Lena Wettergren

Determinants of health-related quality of life in long-term survivors of Hodgkin's lymphoma.

In this study health-related quality of life (HRQL) in long-term survivors of Hodgkins lymphoma (HL) was evaluated and the findings were analyzed using a conceptual model developed by Wilson and Cleary. A better understanding of the relationships between the variables explaining HRQL may improve care and rehabilitation of HL patients. The populations were long-term survivors of HL (n=121) and a control group (n = 236). Participants were approached with one semi-structured interview, an extended version of the Schedule for the Evaluation of Individual Quality of Life – Direct Weighting (SEIQoL-DW) and three standardized questionnaires: Hospital Anxiety and Depression (HAD) scale, Short Form 12 health survey questionnaire (SF-12) and Sense of Coherence (SOC) scale. No differences regarding the mean scores were found between the HL survivors and the controls except for the SF-12, where the patients considered themselves to be in poorer physical health than the controls (p < 0.01). Even though physical health was diminished, patients did not evaluate overall QoL worse compared to the controls. The major determinants of perception of general QoL were self-rated physical and mental health as well as SOC. The HRQL of persons who have survived a median of 14years with HL is similar to that of controls.

Physical and psychosocial functioning in patients undergoing autologous bone marrow transplantation – a prospective study

The main purpose of this study was to evaluate prospectively physical and psychosocial functioning in patients with malignant blood disorders undergoing autologous bone marrow transplantation (ABMT), and relate the findings to the patients’ coping capacity. Twenty patients participated in the study before ABMT, 14 survivors at the 2–6 month follow-up and 12 at the 8–12 month follow-up. Three standardized questionnaires were used: the EORTC QLQ-C30, the Hospital Anxiety and Depression (HAD) scale and the Sense of Coherence scale. No significant changes over time were found in the scores of the QLQ-C30 and HAD. Impaired social function, fatigue, dyspnea, financial problems and emotional distress were the most frequently reported deficits. Functional limitations were related to less successful coping. The results indicate that the patients in this study perceive their physical and psychosocial functioning as rather good before, as well as up to 1 year after the ABMT, as measured with the instruments used.

Positive and negative consequences of childhood cancer influencing the lives of young adults

The aim of the study was to describe how young adults who have survived childhood cancer consider their present life to be influenced by the cancer experience. A cohort of 246 long-term survivors were approached a median of 16 years after diagnosis. Semi-structured telephone interviews were conducted based on the Swedish version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Interviews were analysed using content analyses. When asked if cancer negatively or positively currently affected their lives, 68% reported at least one negative consequence and 53% at least one positive consequence. The most frequently reported negative consequences include a variety of physical impairments and limitations in participating in activities; positive consequences describe a more positive view of life and of self. Women more often than men reported negative psychological impact, a changed body appearance and positive interaction with others. CNS tumours and combined treatment were somewhat associated to a higher extent of negative consequences. Overall, the results indicate that long-term survivors of childhood cancer are getting along quite well despite shortcomings.

Individual quality of life in long-term survivors of Hodgkin's lymphoma - a comparative study

This study aimed to use an individual approach in evaluating QoL in long-term survivors of Hodgkins lymphoma (HL) and their view of what impact the disease has had on life using an extended version of the The Schedule for the Evaluation of the Individual quality of life-Direct Weighting (SEIQoL-DW). Adult long-term survivors from HL (n = 121) were compared with a randomly selected sample of the general population in Stockholm (n = 236). The results showed that the most commonly nominated areas (>50% of patients and controls) important in life were family, personal health, work and relations to other people. The HL survivors mentioned leisure and finances less frequently than the controls. However, neither the current status in the different areas nor the QoL index score differed between survivors and controls. Thoughts and worries around disease, fatigue and loss of energy and late effects on skin and mucous membrane were the most commonly reported problems following HL. Sixty-six percent of the survivors reported a change in their view of life and of themselves. Demographic and disease characteristics did not influence the ratings of the chosen areas. In conclusion, long-term survivors of HL seem to have adapted well to the situation of having had a life-threatening disease and undergoing treatment, as measured with SEIQoL-DW. The extended Swedish version with a disease-specific module could be of great value when identifying specific issues that are important for the patient at time of evaluation.

Self‐Reported Health Status and Use of Medical Care by 3500 Adolescents in Western Sweden. I

ABSTRACT. Some 3500 adolescents answered a questionnaire anonymously. The sample represented 85 % of the students between the ages 13 to 16 and 65 % of the students between 17 to 18 in the three communities studied. The students all had middle class backgrounds. Self‐reported illness differed considerably from data found in epidemiological surveys. The self‐reported medical panorama was dominated by concerns about acne, tiredness, headaches, stomach pains, sports injuries and allergic disorders. One quarter to one third of the students reported such problems. Overall, 85% of the students reported that they were “completely healthy”, at the same time as they also reported an average of 3.1 medical complaints. Self‐initiated appointments with physicians were reported with an average of 5.5 during the last year, which is high. About 40% of the students had one complaint for which they wanted to see a physician. About 15% reported that they had had suicidal thoughts.

The use, feasibility and psychometric properties of an individualised quality-of-life instrument: a systematic review of the SEIQoL-DW

PurposeTo review published studies regarding the use, feasibility and psychometric performance of the schedule for the evaluation of individual quality of life—direct weighting (SEIQoL-DW) in clinical research.MethodsSystematic literature review. Studies using the SEIQoL-DW were included if they were published in English and employed a quantitative design. A pre-defined checklist was used to analyse the reported results.ResultsThirty-nine relevant articles were identified. The SEIQoL-DW has been included in studies relating to a variety of populations, including those who are severely ill. The results of convergent and discriminant validity support our hypotheses in which SEIQoL-DW was expected to correlate moderately to high with measures of global QoL, life satisfaction and mental health and weakly with measures of functional status and health.ConclusionThe SEIQoL-DW appears to be a feasible and valid instrument. The lack of association between the Index score and health, functional status, demographic and clinical parameters may be explained by the instrument’s focus on global QoL and by that of the idiographic measurement approach reflecting the capacity of a patient to value domains other than health in life, despite having health problems. Nevertheless, continued psychometric evaluation in large populations with a longitudinal design is recommended.

‘Will I be able to have a baby?’ Results from online focus group discussions with childhood cancer survivors in Sweden

STUDY QUESTION What do adolescent and young adult survivors of childhood cancer think about the risk of being infertile? SUMMARY ANSWER The potential infertility, as well as the experience of having had cancer, affects well-being, intimate relationships and the desire to have children in the future. WHAT IS KNOWN ALREADY Many childhood cancer survivors want to have children and worry about possible infertility. STUDY DESIGN, SIZE, DURATION For this qualitative study with a cross-sectional design, data were collected through 39 online focus group discussions during 2013. PARTICIPANTS/MATERIALS, SETTING, METHODS Cancer survivors previously treated for selected diagnoses were identified from The Swedish Childhood Cancer Register (16–24 years old at inclusion, ≥5 years after diagnosis) and approached regarding study participation. Online focus group discussions of mixed sex (n = 133) were performed on a chat platform in real time. Texts from the group discussions were analysed using qualitative content analysis. MAIN RESULTS AND THE ROLE OF CHANCE The analysis resulted in the main category Is it possible to have a baby? including five generic categories: Risk of infertility affects well-being, Dealing with possible infertility, Disclosure of possible infertility is a challenge, Issues related to heredity and Parenthood may be affected. The risk of infertility was described as having a negative impact on well-being and intimate relationships. Furthermore, the participants described hesitation about becoming a parent due to perceived or anticipated physical and psychological consequences of having had cancer. LIMITATIONS, REASONS FOR CAUTION Given the sensitive topic of the study, the response rate (36%) is considered acceptable. The sample included participants who varied with regard to received fertility-related information, current fertility status and concerns related to the risk of being infertile. WIDER IMPLICATIONS OF THE FINDINGS The results may be transferred to similar contexts with other groups of patients of childbearing age and a risk of impaired fertility due to disease. The findings imply that achieving parenthood, whether or not with biological children, is an area that needs to be addressed by health care services. STUDY FUNDING/COMPETING INTEREST(S) The study was financially supported by The Cancer Research Foundations of Radiumhemmet, The Swedish Childhood Cancer Foundation and the Doctoral School in Health Care Science, Karolinska Institutet. The authors report no conflicts of interest.

Health-related quality of life relates to school attendance in children on treatment for cancer.

The aims of this study are to follow health-related quality of life (HRQOL), school attendance, and social interaction with friends in children with cancer and to explore potential relationships between HRQOL and school attendance. The study also describes self-reported reasons for not attending school and not meeting friends. During a 2-year period, all schoolchildren in Sweden starting treatment for cancer were invited to participate in the study. Participants (N = 101) were assessed 3 times during the first 5 months of treatment using 2 questionnaires: DISABKIDS Chronic Generic Module (DCGM-37) and a study-specific questionnaire. The results indicate a diminished HRQOL that remained stable over the study period, with girls rating worse HRQOL compared with boys. School attendance significantly increased over time, and approximately half of the children attended school 5 months after start of treatment. Self-reported HRQOL was positively correlated to days of school attendance. The results emphasize the importance of psychosocial care and nursing for children diagnosed with cancer, especially for girls. Research to further explore gender differences in HRQOL among children diagnosed for cancer is recommended.

Sexual function and experience among long-term survivors of childhood cancer.

AIM The objective was to compare sexual function, sexual experience and quality of partner relationship by gender in a cohort of long-term survivors of childhood cancer with a sample from the general population. METHODS A 30-item self-reported postal questionnaire was completed by a cohort of 224 (64%) long-term survivors of childhood cancer and 283 (51%) randomly selected persons from the general population. RESULTS Male survivors more often reported periods of low sexual interest (p = 0.019), more frequently reported low sexual satisfaction (p = 0.015), less frequently reported feeling sexually attractive (p = 0.020) and reported a lower total number of sexual partners (p = 0.031) than males in the comparison group did. Males diagnosed with a central nervous system (CNS) tumour more frequently reported sexual arousal problems (p = 0.003), low sexual satisfaction (p = 0.021) and total number of sexual partners (p = 0.012) than did males with other diagnoses. There were no statistically significant differences regarding sexual function between the female survivors and the females in the comparison group. CONCLUSION The results indicate that cancer disease and treatment have more impact on sexual function of male survivors than on the sexual function of female survivors. Amongst the survivors, males diagnosed with CNS tumours were shown to be the most vulnerable group. Assessment of sexual function is recommended to be included in regular follow-ups after childhood cancer.

Women more vulnerable than men when facing risk for treatment-induced infertility: A qualitative study of young adults newly diagnosed with cancer

Abstract Background. Being diagnosed with cancer constitutes not only an immediate threat to health, but cancer treatments may also have a negative impact on fertility. Retrospective studies show that many survivors regret not having received fertility-related information and being offered fertility preservation at time of diagnosis. This qualitative study investigates newly diagnosed cancer patients’ experiences of fertility-related communication and how they reason about the risk of future infertility. Material and methods. Informants were recruited at three cancer wards at a university hospital. Eleven women and 10 men newly diagnosed with cancer participated in individual semi-structured interviews focusing on three domains: experiences of fertility-related communication, decision-making concerning fertility preservation, and thoughts and feelings about the risk of possible infertility. Data was analyzed through qualitative content analysis. Results. The analysis resulted in three sub-themes, ‘Getting to know’, ‘Reacting to the risk’ and ‘Handling uncertainty’, and one main theme ‘Women more vulnerable when facing risk for infertility’, indicating that women reported more negative experiences related to patient-provider communication regarding fertility-related aspects of cancer treatment, as well as negative emotional reactions to the risk of infertility and challenges related to handling uncertainty regarding future fertility. The informants described distress when receiving treatment with possible impact on fertility and used different strategies to handle the risk for infertility, such as relying on fertility preservation or thinking of alternative ways to achieve parenthood. The negative experiences reported by the female informants may be related to the fact that none of the women, but almost all men, had received information about and used fertility preservation. Conclusions. Women newly diagnosed with cancer seem to be especially vulnerable when facing risk for treatment-induced infertility. Lack of shared decision-making concerning future fertility may cause distress and it is therefore necessary to improve the fertility-related communication targeted to female cancer patients.