Information needs in parents of long-term childhood cancer survivors.

Vetsch, Janine; Rueegg, Corina S; Gianinazzi, Micòl E; Bergsträsser, Eva; von der Weid, Nicolas X; Michel, Gisela (2015). Information needs in parents of long-term childhood cancer survivors. Pediatric blood & cancer, 62(5), pp. 859-866. Wiley-Liss 10.1002/pbc.25418

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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 (i) parents' perception of information received during and after treatment; (ii) parents' current needs for information today, and to investigate; and (iii) 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 that they received mainly verbal information. However, they still needed further information especially about possible late effects. Individual long-term follow-up plans, including a treatment summary, should be provided to each survivor, preferably in written format.

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