Information Needs in Parents of Long-Term Childhood Cancer Survivors


Parents’ knowledge about cancer, treatment, potential late effects, and necessary follow-up is important to reassure themselves and motivate their children to participate in regular follow-up. The authors aimed to describe parents’ perception of information received during and after treatment; parents’ current needs for information today, and to investigate; and associations between information needs and socio-demographic and clinical characteristics.

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 the study. We assessed parents’ perception of the information received and information needs, concerns about the consequences of cancer and socio-demographic information.

Information on clinical data was available from the Swiss Childhood Cancer Registry. Of 309 eligible parents, 189 responded. 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. The preferred source was written general or verbal information, less favored was online information. Parents reported that they received mainly verbal information.

However, they still needed further information especially about possible late effects, preferably in written format.