What are cancer survivors’ needs and how well are they being met?

ABSTRACT

Purpose This study sought to identify the needs and unmet needs of the growing number of adult cancer survivors.


Methods Vermont survivor advocates partnered with academic researchers to create a survivor registry and conduct a cross-sectional survey of cancer-related needs and unmet needs of adult survivors. The mailed survey addressed 53 specific needs in 5 domains based on prior research, contributions from the research partners, and pilot testing. Results were summarized by computing proportions who reported having needs met or unmet.

Results Survey participants included 1668 of 2005 individuals invited from the survivor registry (83%); 65.7% were ages 60 or older and 61.9% were women. These participants had received their diagnosis 2 to 16 years earlier; 77.5% had been diagnosed ≥5 years previously; 30.2% had at least one unmet need in the emotional, social, and spiritual (e) domain; just 14.4% had at least one unmet need in the economic and legal domain. The most commonly identified individual unmet needs were in the e and the information (i) domains and included “help reducing stress” (14.8% of all respondents) and “information about possible after effects of treatment” (14.4%).

Conclusions Most needs of these longer-term survivors were met, but substantial proportions of survivors identified unmet needs. Unmet needs such as information about late and long-term adverse effects of treatment could be met within clinical care with a cancer survivor care plan, but some survivors may require referral to services focused on stress and coping.

Following a successful course of treatment for cancer, many patients return to or remain in the care of their primary care physician (PCP). What often goes unrecognized, however, are these cancer survivors’ unique needs—physical, psychological, social, spiritual, economic, and legal—and the informational and professional services available to address them.^1,2

Increased cancer survival creates new needs. There are already >12 million cancer survivors in the United States and >30 million worldwide.³ As baby boomers age, the number of cancers diagnosed over the next 45 years will double⁴ and improved diagnosis and treatments are already prolonging survivors’ lives. With the greater number of cancer survivors and longer survival time, a cancer survivorship advocacy community has developed to help identify and address the concerns, needs, and benefits of having lived with, through, and beyond a cancer diagnosis.

The purpose of our study. Some of these areas of need have been studied extensively with childhood survivors, breast cancer survivors, and, more recently, prostate cancer survivors. However, few studies have examined adult survivors from all cancer types^5-9 or have had cohorts large enough to yield meaningful information.^5,7-9 The aim of this study was to describe the needs of adult survivors of all cancer types in a general population from Vermont and to determine whether these needs were met. The results of this study can help identify the services needed by cancer survivors.

METHODS

Population and sample

After effects
 of treatment, a big concern for most patients, 
is important to address not only at the outset 
of treatment but also at its conclusion
 and with documentation in a survivor care plan. In November 2009, we invited all survivors listed in a cancer survivor registry to complete a 12-page survey. The registry¹⁰ was created as part of the Cancer Survivor Community Study, a community-based participatory research project funded by the National Cancer Institute. The study’s Steering Committee was comprised of cancer survivors, cancer registrars, and researchers. We identified and invited cancer survivors from 4 hospital registries in northwest and central Vermont to participate. Registry participants who indicated willingness to enroll in research studies received an invitation letter and informed consent form, the 12-page survey, and an addressed and stamped return envelope. We obtained Institutional Review Board (IRB) approval for these procedures at the University of Vermont and at local hospital IRBs.

Instrument development

A working group from the Steering Committee reviewed a range of available instruments to assess cancer survivors’ needs.^9,11-15 We determined that the survey most relevant to our objectives was the Cancer Survivors’ Unmet Needs (CaSun) instrument.¹³ Because CaSun was developed in Australia, we carefully examined each question for appropriateness to our target audience. We eliminated several questions that we thought less important, added questions from other instruments, and simplified the survey format. Survivors from the Steering Committee pilot tested the draft questionnaire to identify awkward wording or concepts.

We piloted the revised draft using a standardized feedback form with cancer survivors who were not connected to our project and not enrolled in the survivor registry, and with residents at a senior center. Students and a teacher from an Adult Basic Education program helped to ensure easy readability. Our final instrument had 53 questions about needs in 5 domains. Questions within each domain completed the lead-in, “Since your cancer diagnosis, did you need....” We asked participants to check only 1 of the 3 boxes to the right of each question to indicate that there was no need in that area, that there was a need and it was met, or that there was a need and it was not met. We obtained self-reported demographic data during enrollment in the registry.