Being young with a cancer experience : health-related quality of life with special focus on independence and sexuality

The increased survival rates for persons with a cancer experience from childhood imply that health care professionals working in different areas of the health care sector will encounter young persons with a cancer experience. It is therefore of importance to investigate perceptions of health and life situation including health-related quality of life (HRQoL) among young persons with such experience. Previous research in the area shows a somewhat varying picture and independence and sexuality have not been studied to a ‎large extent, still aspects relevant for young people. The overall aim for this thesis was to investigate self-reported HRQoL with special focus on independence and sexuality ‎among young persons treated for cancer during childhood. Study I is a methodological study, studies II-IV primarily have a cross-sectional design while study III also include longitudinal data. Two samples of survivors after childhood cancer were included, for studies I-III a national Swedish cohort consisting of persons 4-6 years after diagnosis (n=63, aged 12-22) and for study IV, a sample of adolescents and young adults (≥‎5 years after diagnosis) (n=133, aged 16-25). An age- matched comparison group was included in studies I-III (n=257). In study I, a Rasch- analysis was performed to assess the psychometric properties of the instrument KIDSCREN-27, studies II-III had a quantitative approach and were based on semi- structured interviews and self-reported questionnaires and study IV on written online focus group discussions which were analysed with qualitative inductive content analysis. The psychometric evaluation of KIDSCREEN-27 (study I) indicated that the instrument is acceptable to use among young persons with a cancer experience. Further, the overall results from study II and III revealed that the majority of survivors report satisfactory levels of HRQoL, similar or higher than a comparison group. A small group reported lower levels of HRQoL which corresponded to findings from the semi- structured interviews (study II). The survivors rated their independence as higher 5 years after diagnosis compared to the time at diagnosis and higher compared to the comparison group (study III). The analysis of the written online focus groups (study IV) resulted in one main category, Sex as a given part of life, with four generic categories: Sex considered to be good, Feeling insecure and falling behind, Relating sex to a stable relationship and Physical concerns. The majority had positive experiences of sex without any experiences of sexual problems. However, thoughts and worries included limited sexual experiences, feeling insecure, being behind peers and physical concerns such as vaginal dryness and erectile dysfunction. Experiences and concerns were sometimes related to the cancer experience but most often not. The findings of the thesis illustrate that the majority of those with a cancer experience from childhood get along well in terms of self-reported HRQoL focusing on independence and sexuality. However, a small group seem to be in need of extra support, displayed by lower ratings of HRQoL and sexual matters such as worrying thoughts and physical concerns. Registered nurses are suggested to take an active role in the care of young persons with a cancer experience. By tailoring the follow-up care in concordance to the needs and desires from these persons, the health and life situation for this group can be improved. Continued research, in a longer time perspective, is suggested in the areas of sexuality and sexual function