Cancer During Adolescence: Psychosocial Consequences and Methodological Issues

Sammanfattning: The overall aim of this thesis was to investigate psychosocial consequences of cancer during adolescence, using a longitudinal approach. An additional aim was to investigate if mode of administration has an influence on adolescents’ and young adults’ self-reported psychosocial function.In Study I participants, aged 13-23 years, were randomised according to two modes of administration, telephone interview and postal questionnaire, and asked to complete the Hospital Anxiety and Depression Scale (HADS) and Short Form 36 (SF-36). The telephone mode resulted in a higher response rate, better self-rated psychosocial function (except for the youngest age group), overall lower Cronbach’s alpha values, and a larger percentage of ceiling effects compared to the postal mode. A higher proportion of males than females chose not to participate in the postal mode. In Study II and III adolescents diagnosed with cancer completed the HADS and two sub-scales from the SF-36 (Mental Health and Vitality) 4-8 weeks, 6, 12, and 18 months after diagnosis. In Study II adolescents with cancer were compared to a reference group from the general population. Shortly after diagnosis the cancer group rated their psychosocial function as worse compared to the reference group. However, the differences gradually disappeared over time and were then reversed, resulting in the cancer group reporting better vitality and lower levels of anxiety and depression than the reference group eighteen months after diagnosis. In Study III five distinct psychosocial states were identified, characterised by: psychosocial dysfunction (state A), poor psychosocial function (state B), incomplete psychosocial function (state C), good psychosocial function (state D), and excellent psychosocial function (state E). Shortly after diagnosis more adolescents than expected by chance were found in states A and C and fewer were found in states D and E. Eighteen months after diagnosis a different pattern emerged, where more adolescents than expected were found in state E and fewer than expected in state C. In Study IV adolescents, two years after diagnosis, reported problems with physical impairment, intrusive thoughts, feelings of alienation, and problems catching up with school. However, a majority of the participants also reported positive consequences with regard to the cancer disease: a more positive view of life, good self-esteem, knowledge and experience with regard to disease and hospital care, good relations, broader perspectives, and material gains. Study V, a review of the literature, indicates that survivors of childhood/adolescent cancer do not differ from comparison groups with regard to relations to others and relation to self. However, some findings highlight that friendship and marital status are areas of concern, and parenthood and sexuality are areas of potential concern. In conclusion, mode of administration influences adolescents’ and young adults’ self-reported psychosocial function and is related to age. Psychosocial function increases with time from diagnosis for most adolescents diagnosed with cancer. However, some individuals remain in poor psychosocial states during the first eighteen months after diagnosis. Increased efforts should be taken to identify these individuals.