Long-Term Cancer Survivorship in Puerto Rico: Health Status and Informational Needs Reported by Young Adult Survivors

Background:  While incidence rates are increasing for many cancers in Puerto Rico, mortality rates are declining, resulting in growing numbers of survivors and creating a situation in which long-term concerns are beginning to emerge as priorities.  The importance of quality-of-life among survivors of cancer is increasingly recognized among healthcare providers; however, few studies have examined these issues from the perspective of the survivors themselves and much about their experiences and needs are unknown. 

Objective:  This paper will examine the informational needs that survivors identified relating to post-treatment health and well-being.

Methods: Thirty-four (34) in-depth, semi-structured interviews were conducted with young adult cancer survivors (n=23) and cancer advocates (n=11) as part of a medical anthropological study on cancer survivorship in Puerto Rico.  Transcripts were coded using the constant-comparative method and analyzed for commonly expressed themes.

Results:  The most common post-treatment health conditions reported by survivors were lymphedema, thyroid disease, chronic pain, skin problems, vaginal dryness, and fatigue.  Survivors outlined major gaps in providers’ provision of information about issues relating to both quality-of-life and long-term sequelae of treatment.  The most frequently expressed informational needs related to nutrition, weight control, exercise, breast reconstruction, lymphedema, psychological/emotional support, infertility/fertility preservation, sexuality and intimacy, and breastfeeding.

Discussion:  While most survivors reported being debriefed by their oncologists on the risks of recurrence and life-threatening treatment-related effects such as cardiac problems, there remains a gap in patient education regarding important quality-of-life issues.  Greater awareness of these issues can be created through physician training and health education efforts.