Information needs in parents of long-term childhood cancer survivors

Background: Parents' knowledge about cancer, treatment, potential late effects and necessary follow-up is important to reassure themselves, and motivate their child to participate in regular follow-up. We aimed to describe 1) parents' perception of information received during and after treatment, 2) parents' needs for information today, and to investigate 3) associations between information needs and socio-demographic and clinical characteristics. Methods: As part of the Swiss Childhood Cancer Survivor Study, a follow-up questionnaire was sent to parents of survivors, diagnosed <16 years and after 1990, and aged 11-17 years at study. We assessed parents' perception of information received and information needs, concerns about consequences of the cancer and socio-demographic information. Information on clinical data was available from the Swiss Childhood Cancer Registry. Results: Of 309 eligible parents, 189 responded (67%; mean time since diagnosis: 11.3 years, SD=2.5). Parents perceived to have received verbal information (on illness: verbal 91%, written 40%; treatment: verbal 88%, written 46%; follow-up: verbal 85% written 27%; late effects: verbal 75%, written 19%). Many parents reported current information needs, especially on late effects (71%). The preferred source was written general (28%) or verbal information (25%), less favored was online information (12%). Information needs were associated with migration background (p=0.039), greater concerns about consequences of cancer (p=0.024) and no information received (p=0.035). Conclusion: Parents reported they received mainly verbal information. However, they still needed further information especially about possible late effects. Individual long-term follow-up plans including treatment summary should be provided to each survivor, preferably in written format.