Health information needs and preferences in relation to survivorship care plans of long-term cancer survivors in the American Cancer Society's Study of Cancer Survivors-I

J Cancer Surviv. 2016 Aug;10(4):674-85. doi: 10.1007/s11764-015-0513-4. Epub 2016 Jan 7.

Abstract

Purpose: Survivorship care plans (SCPs) provide cancer patients and health care providers with a treatment summary and outline of recommended medical follow-up. Few studies have investigated the information needs and preferred sources among long-term cancer survivors.

Methods: Cancer survivors of the ten most common cancers enrolled in the longitudinal Study of Cancer Survivors-I (SCS-I) completed a survey 9 years post-diagnosis (n = 3138); at time of diagnosis of the SCS-I cohort, SCPs were not considered usual care. We assessed participants' current desire and preferred sources for information across ten SCP items and evaluated factors associated with information need 9 years after diagnosis.

Results: The proportion of long-term cancer survivors endorsing a need for cancer and health information 9 years post-diagnosis ranged from 43 % (cancer screening) to 9 % (consequences of cancer on ability to work). Print media and personalized reading materials were the most preferred information sources. Younger age, higher education, race other than non-Hispanic white, later cancer stage, having breast cancer, having ≥2 comorbidities, and self-reporting poor health were associated with greater informational need (p < 0.05).

Conclusions/implications for cancer survivors: Long-term cancer survivors continue to report health information needs for most SCP items and would prefer a print format; however, level of need differs by socio-demographic and cancer characteristics. Cancer survivors who did not previously receive a SCP may still benefit from receiving SCP content, and strategies for enabling dissemination to long-term survivors warrant further investigation.

Keywords: Cancer survivor; Health information need; Information delivery source; Long-term.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • American Cancer Society*
  • Female
  • Humans
  • Male
  • Survival Rate
  • Survivors / statistics & numerical data*