Life after childhood cancer

Young people who have undergone treatment for childhood cancer have a high risk of developing chronic health problems that could have a potential strong impact on their lives. How a childhood cancer experience affects the lives of young survivors has only been studied to a limited extent. The overall aim was therefore to investigate how adolescent and young adult survivors of childhood cancer perceive that their lives are affected by having had cancer. In study I, the aim was to gain a deeper understanding of how childhood cancer affects the lives of survivors by exploring adolescents’ and young adults’ views of what it is like living with this experience. In study II, the aim was to describe quality of life in relation to self-reported health status and socio-demographic characteristics among long-term survivors of childhood cancer as compared to that among a sample from the general population.

The thesis includes two studies using cross-sectional designs, drawing on data from two different samples based on interview and survey data. In study I, 59 young survivors (12-22 years) were interviewed a median of five years after diagnosis (response rate 66%), and the interviews were analysed with qualitative content analysis. In study II, 246 long-term survivors (18-35 years) were interviewed a median of 16 years after diagnosis (response rate 64%), as well as 296 randomly selected controls (response rate 51%). Quality of life was assessed using the Schedule for the Evaluation of Individual Quality of Life- Direct Weighting (SEIQoL-DW) and self-reported health status was assessed using the Short Form Health Survey (SF-36).

The results from study I revealed that the young survivors of childhood cancer could be divided into three groups depending on how they perceived having had cancer affected their current lives: ‘Feeling like anyone else’ (the informants who described that the cancer experience had almost no influence on their current life) (49%), ‘Feeling almost like others’ (those who described some influence) (44%) and ‘Feeling different’ (those describing a great influence on current life) (7%). The results from study II showed that long-term survivors rated their overall quality of life and self-reported health status almost in parity with the comparison group. In both groups, family life, relations to other people, work and career, interests and leisure activities were the areas most frequently reported to influence quality of life. The long-term survivors only differed from the comparison group on one of eight SF-36 scales, which reflected problems with daily activities owing to physical health.

In conclusion, survivors appear to get along well after treatment for childhood cancer, although many informants described lives that were to some extent affected by having had cancer. To meet the needs of young survivors who perceive that the cancer experience to a large extent influences daily life and may find the health impairments hindering, follow-up care should be able to identify those having trouble in daily life and offer them support to strengthen their resources and ability achieve a good quality of life.

List of scientific papers

I. Berg Doukkali, E.,Winterling, J., Eriksson, L. E., Lampic C., Silvén Hagström, A.,Wettergren, L. Adolescents and Young’ Adults Experiences of Childhood Cancer – Descriptions of Daily Life Five Years After Diagnosis. [Submitted]

II. Sundberg, K., Doukkali, E., Lampic, C., Eriksson, L. E., Arvidson, J., Wettergren, L. (2010). Long-Term Survivors of Childhood Cancer Report Quality of Life and Health Status in Pariety With a Comparison Group. Pediatric Blood Cancer. 55, 337-343.
https://doi.org/10.1002/pbc.22492