Information needs in parents of long-term childhood cancer survivors

Pediatr Blood Cancer. 2015 May;62(5):859-66. doi: 10.1002/pbc.25418. Epub 2015 Feb 7.

Abstract

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.

Keywords: follow-up care; information needs; information received; parents of childhood cancer survivors; pediatric oncology; questionnaire survey.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Child
  • Child, Preschool
  • Decision Making*
  • Delivery of Health Care
  • Female
  • Follow-Up Studies
  • Humans
  • Infant
  • Infant, Newborn
  • Information Services / standards
  • Information Services / statistics & numerical data*
  • Male
  • Middle Aged
  • Needs Assessment*
  • Neoplasms / prevention & control*
  • Parents / education*
  • Parents / psychology*
  • Prognosis
  • Quality of Life
  • Registries
  • Survivors / psychology*