Information provision and information needs in adult survivors of childhood cancer

Abstract

Background: Knowledge about their past medical history is central for childhood cancer survivors to ensure informed decisions in their health management. Knowledge about information provision and information needs in this population is still scarce. We thus aimed to assess: (1) the information survivors reported to have received on disease, treatment, follow-up, and late effects; (2) their information needs in these four domains and the format in which they would like it provided; (3) the association with psychological distress and quality of life (QoL).

Procedure: As part of the Follow-up survey of the Swiss Childhood Cancer Survivor Study, we sent a questionnaire to all survivors (≥18 years) who previously participated to the baseline survey, were diagnosed with cancer after 1990 at an age of <16 years.

Results: Most survivors had received oral information only (on illness: oral: 82%, written: 38%, treatment: oral: 79%, written: 36%; follow-up: oral: 77%, written: 23%; late effects: oral: 68%, written: 14%). Most survivors who had not previously received any information rated it as important, especially information on late effects (71%). A large proportion of survivors reported current information needs and would like to receive personalized information especially on late effects (44%). Survivors with higher information needs reported higher psychological distress and lower QoL.

Conclusions: Survivors want to be more informed especially on possible late effects, and want to receive personalized information. Improving information provision, both qualitatively and quantitatively, will allow survivors to have better control of their health and to become better decision makers.

Keywords: childhood cancer survivors; cohort study; information needs; information provision; questionnaire survey.

Fig. 1

Survivors’ rating of the information they did not receive. The rating on illness, treatment, follow up, and late effects which they reported not to have received.

Fig. 2

Association between psychological distress and information needs on illness, treatment, follow up, and late effects. Mean differences in T-scores and 95% confidence intervals on the three BSI-18 scales (somatization, depression, and anxiety) between survivors with information needs on illness (black diamond), treatment (white triangle), follow-up (gray square), and late effects (dotted circle) versus survivors without information needs. Higher scores indicate higher distress. Means were adjusted for sex, age, language, and diagnosis.

Fig. 3

Association between health related quality of life (HRQoL) and information needs on illness, treatment, follow up and late effects. Mean differences in T-scores and 95% confidence intervals on the three SF 12 summary scores scales (Physical component summary, Mental component summary) between survivors with information needs on illness (black diamond), treatment (white triangle), follow-up (gray square) and late effects (dotted circle) versus without information needs. Lower scores indicate lower HRQoL. Means were adjusted for sex, age, language, and diagnosis.