Towards a Person-Centered Value Framework: Results from an Online Survey of 3000 Cancer Patients and Survivors

Background/Purpose: Value frameworks are increasingly used to inform treatment decisions in oncology. These frameworks aim to guide patients and providers towards the lowest cost, most effective treatments for their condition. Oncology providers, insurance and pharmaceutical companies have put forth their own value frameworks, but rarely has value been conceptualized from the patient’s perspective. The concepts of effectiveness and cost may have different meanings for patients, and may vary considerably across individuals and families. A value framework that incorporates the priorities of patients, their quality of life and wellbeing concerns is long overdue.

Methods: This study describes the responses from an online survey of 3000 cancer patients and survivors that was conducted by between July and December 2015. Respondents were purposively sampled from consumer panels, and stratified by cancer type and geographic region to approximate the features of the wider cancer-affected population of the United States. The study consisted of six discrete surveys on patients’ perceptions and experiences across the trajectory of cancer care, including: 1) diagnosis, 2) treatment planning, 3) communication with providers, 4) insurance and financial concerns, 5) quality of life, side effects and symptoms, and 6) survivorship and end-of-life.  Descriptive, bivariate and multivariate analyses were used to explore respondents’ reported needs, priorities and quality of life experiences at each stage of care.

Results: Of 3000 respondents, 57% were female, 60% were over 55 and 40% 25-54 years old. The most common cancer types were breast, prostate, and colorectal respectively. Most respondents were insured by Medicare/Medicaid (55%), or private insurers (45%), and 10% of these acquired their plans through an ACA marketplace.

After discussing diagnosis, prognosis and treatment options with providers, respondents most commonly needed more information regarding their insurance coverage and anticipated out-of-pocket costs (65%), access to clinical trials (89%), and support organizations (45%). Their foremost concern was their ability take care of their family (65%). They were least satisfied with the attention their care team paid to the impact of symptoms and side effects on daily life (12%). Quality of life reduced significantly after cancer (p<.01, t=2.74). Finances were commonly cited as a major concern. Forty-one percent were very or extremely distressed about losing their ability to work and over 25% reported high-levels of cancer-related financial hardship. In unadjusted models, financial hardship was significantly associated with difficulty understanding insurance coverage (p<.001, B= -0.268).

Conclusions and Implications: These findings indicate that improving value will require more attention to certain aspects of patient quality of life, such as out-of-pocket treatment costs and the impact of side effects and symptoms on daily life. Emerging person-centered value frameworks should include attention to these aspects of care. Oncology and primary care social workers can support quality of life and improve treatment value by helping patients and caregivers to better understand the details of their insurance coverage, advocating for financial support, and discussing the symptoms and side effects of treatment throughout the trajectory of cancer care.