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

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.

Author information

1
Yale School of Public Health, Yale University, 55 Church Street, Suite 801, New Haven, CT, 06510, USA. mary.playdon@yale.edu.
2
Yale School of Public Health, Yale University, 55 Church Street, Suite 801, New Haven, CT, 06510, USA.
3
Yale Cancer Center, New Haven, CT, USA.
4
Yale School of Nursing, Yale University, New Haven, CT, USA.
5
Yale School of Medicine, Yale University, New Haven, CT, USA.
6
Behavioral Research Center, American Cancer Society, Atlanta, GA, USA.

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

PMID:
26744339
PMCID:
PMC5032143
DOI:
10.1007/s11764-015-0513-4
[Indexed for MEDLINE]
Free PMC Article

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