Anna Jervaeus

‘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.

Clinical significance in self-rated HRQoL among survivors after childhood cancer – demonstrated by anchor-based thresholds

Abstract Background. There is a need to establish clinically relevant thresholds (anchors) for identification of differences in health-related quality of life (HRQoL) and thereby provide stronger evidence regarding the HRQoL of childhood cancer survivors. Aim. To investigate HRQoL in childhood cancer survivors with a standardised instrument and to establish thresholds for clinically significant differences by using qualitative interviews as anchors. An additional aim was to investigate survivors’ HRQoL in relation to an age-matched comparison group without cancer experience. Material and methods. Self-rated HRQoL (KIDSCREEN-27) was assessed in a national cohort of survivors (n = 63, aged 12–22) and a comparison group (n = 257, aged 11–23). Findings from qualitative interview data were also used (n = 61); three subgroups (“Feeling like anyone else”; “Feeling almost like others”; “Feeling different”) were identified based on survivors own perception of influence on daily life. Effect size calculations based on means from the KIDSCREEN-27 dimensions were performed using the subgroups as anchors to indicate clinical importance. Furthermore, standard multiple regression analyses were performed. Results. Effect sizes between the subgroups “Feeling like anyone else” and “Feeling almost like others” and the group “Feeling different” were large for all dimensions (1.04–2.07). The multiple regression models showed that being a survivor was significantly associated with one of the dimensions, School Environment, where survivors scored higher HRQoL. Furthermore, female sex and older age (17–23 years) significantly contributed to lower self-rated HRQoL. Conclusion. In clinical practice the KIDSCREEN-27 could be a useful screening tool to identify survivors of childhood cancer in need of extra support, using KIDSCREEN dimension mean values of 45 or less as thresholds. Larger scale studies are recommended to identify and test thresholds with regard to different age groups and time since diagnosis.

Perceptions of School Among Childhood Cancer Survivors A Comparison With Peers

The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers (n = 47). Data were collected through interviews and analyzed qualitatively and quantitatively. The results indicate that survivors and peers perceive school similarly; almost 90% described high well-being in school and indicated that they were motivated and received no additional tutoring; approximately 60% reported no difficulties achieving learning objectives. A few differences were found; survivors described themselves as more satisfied with their academic performance and school environment, but less satisfied with friends, than peers did. Previous treatment with radiation was associated with lower academic satisfaction among survivors. It is suggested that survivors perceive school overall as positive and do not have more problems reaching educational goals than their peers. However, quality of relationships with friends needs further investigation.

The importance of people's values and preferences for colorectal cancer screening participation

Background To explore how individuals reason when they make decisions about participating in colorectal cancer (CRC) screening. Methods Individuals randomized to FIT or colonoscopy included in the Screening of Swedish Colons (SCREESCO) program was invited to focus group discussions and individual telephone interviews. The concept of shared decision-making (SDM: information; values/preferences; involvement) was used as a matrix for the analyses. To validate findings, additional focus group discussions using the nominal group technique were performed. Results Lack of knowledge of CRC and CRC screening was prominent for participants and non-participants, while the results differed between the groups in relation to their values and preferences. The influence of significant others promoted participation while it prevented it among non-participants. Those who participated and those who did not made it clear that there was no need to involve health care professionals when making the decision. Conclusions Based on the results, a display of different ways to spread knowledge and communicate about CRC and CRC-screening could be applied such as, community-based information campaigns, decisions aids, interactive questionnaires, chat-functions and telephone support. The disparity in values and preferences between participants and non-participants may be the key to understand why non-participants make their decisions not to participate and warrant further exploration.

Survivors of Childhood Cancer Report High Levels of Independence Five Years After Diagnosis.

The aim was to compare self-rated independence in childhood cancer survivors 5 years after diagnosis with corresponding ratings during initial cancer treatment and those in a comparison group. A further aim was to determine whether and how certain clinical and demographic variables affected self-rated independence. Self-rated independence, a dimension included in the health-related quality of life (HRQoL) measure DISABKIDS Chronic Generic Measure (DCGM-37), was assessed in a Swedish cohort of survivors (n = 63, aged 12-22 years) and compared with ratings during initial cancer treatment and those in an age-matched comparison group (n = 257). Potential predictors of self-rated independence were estimated using multiple regression analysis. Survivors rated their independence significantly higher 5 years after diagnosis than during initial cancer treatment and higher than the comparison group. Neither demographic nor clinical variables (age, sex, diagnosis, initial cancer treatment) predicted self-rated independence 5 years post diagnosis. Five years after diagnosis, survivors of childhood cancer appear to have reached a satisfactory level of independence. However, survivors are likely to experience complications over the longer term, and therefore continued follow-up is warranted to follow possible changes in self-reported independence.

Translation and cultural adaption of the decisions module for colorectal cancer screening into a Swedish version – the SCREESCO questionnaire

Abstract Objectives: Colorectal cancer (CRC) is suitable for population screening due to its high incidence and the recognizable and treatable prephase, and the present study is part of the larger study; Screening for Swedish Colons (SCREESCO). In Sweden, there is, to our knowledge, no questionnaire assessing shared decision making (SDM) with regard to CRC screening and, therefore, the aim of the study was to translate and culturally adapt the CRC screening module of the National Survey of Medical Decisions (DECISIONS) into a Swedish context. Material and methods: A qualitative design inspired by guidelines based on methods for cross-cultural adaptation of questionnaires was used. In addition, focus group discussions, individual interviews and think-aloud (TA) sessions were performed. Results: Of the 54 items included in the original DECISION survey, 32 were excluded, 22 were modified, and three were added as a result of the qualitative study. How the health care organization communicated and CRC screening knowledge was communicated were found to be the most important cultural differences between Sweden and the USA. The final questionnaire consists of 24 items. Conclusion: The process of translation and cultural adaptation of the CRC screening module of the DECISIONS survey resulted in the removal and modifying of a considerable number of items. The major rationale for the removal and modifying of items can be explained by the different cultural traditions between Sweden and the USA when communicating with the health care system regarding screening participation and how CRC screening information and knowledge is communicated.

Metadata and Title Correction: Online Focus Group Discussion is a Valid and Feasible Mode When Investigating Sensitive Topics Among Young Persons With a Cancer Experience

[This corrects the article DOI: 10.2196/resprot.5616.].