Survivorship Care Planning and Unmet Information and Service Needs Among Adolescent and Young Adult Cancer Survivors

Abstract

Purpose:

To examine whether survivorship care planning (receipt of written treatment summary or instructions for follow-up care) is associated with unmet needs among adolescent and young adult (AYA) cancer survivors (aged 15–39 at diagnosis).

Methods:

We used data from the 2010 LIVESTRONG Survey for People Affected by Cancer. Outcome variables were survivor reports of unmet needs, including information on late effects of cancer treatment, fertility issues, cancer recurrence, and family cancer risk. We used multivariable logistic regression models to determine whether receipt of either a treatment summary or follow-up care instructions was associated with each unmet needs after controlling for sociodemographic and cancer history factors.

Results:

Of the AYA respondents (N = 1395), only 30% reported receipt of a written treatment summary and 86% received instructions for follow-up care. The most commonly reported unmet need was addressing recurrence concerns (80%), followed by information on late effects (78%), family risk of cancer (51%), and fertility information (45%). In multivariable analyses, receipt of a written treatment summary was associated with lower odds of having unmet needs about late effects information (odds ratio; OR = 0.51 [0.37–0.71]) and recurrence concerns (OR = 0.55 [0.39–0.79]). Receipt of follow-up care instructions was associated with lower odds of unmet needs about late effects information (OR = 0.29 [0.15–0.58]) and fertility information (OR = 0.62 [0.42–0.91]).

Conclusions:

Survivorship care planning including written treatment summaries and follow-up care instructions may help reduce unmet information and service needs of AYA survivors. This study provides further evidence for the importance of survivorship care planning as a way to improve survivor outcomes.