Informal caregivers play a critical role in the emotional, functional, and medical support of adult cancer survivors, and a burgeoning area of research shows that the well-being of informal cancer [ Read More ]
July 2017 VOL 8, NO 7
Evaluating the Patient-Centered Quality of Cancer Survivorship Care Models
Cancer survivors in the United States are living longer, and cancer is increasingly viewed as a chronic illness that requires systematic, coordinated care. But research and practice have not yet determined the most effective survivorship models in terms of providing high-quality, patient-centered care. Due to this lack of cancer survivorship–specific guidelines, cancer centers are increasingly developing ad hoc or unproven survivorship care models, according to Sarah Raskin, PhD, MPH.
“Sixty-seven percent of our current 15.5 million posttreatment cancer survivors were diagnosed 5 or more years ago, which has led to questions about how we should handle their care, particularly in regard to whether or not the healthcare system is equipped to deal with cancer survivors’ issues,” said Dr Raskin, a research scientist at the Institute for Patient-Centered Initiatives and Health Equity at the George Washington (GW) University Cancer Institute in Washington, DC.
She and her team at GW conducted a comparative research study to evaluate the quality of 3 common models of cancer survivorship care and presented the preliminary results at the 2017 American Society of Clinical Oncology Quality Care Symposium. Dr Raskin presented on behalf of principal investigator Holly Mead, PhD, and the rest of the core research team leading the Evaluating Cancer Survivorship Care Models project.
The researchers examined the effectiveness of survivorship care distributed across 3 emerging models of care: the specialized consultative model, the specialized longitudinal model, and the oncology-embedded model. A total of 991 survivors of breast, colorectal, and prostate cancer were enrolled across 32 cancer programs, and results were based on 827 patients. Self-reported data on the quality of survivorship services were collected over a 6-month period, and mean quality scores were calculated for each of the 9 components of care.
Specialized models include formalized survivorship-specific visits, most likely led by an oncology nurse practitioner. The distinction between the 2 specialized models is whether they occur 1 time (consultative), or at 2 or more time points with structured predetermined intervals (longitudinal). “This care model seems to enjoy a lot of operational support and prioritization by senior leaders,” said Dr Raskin. By contrast, the oncology-embedded model addresses survivorship as part of continual oncology follow-up care, typically by the treating oncologist, and is introduced prior to the end of treatment, she explained.
The team developed the Patient-Prioritized Measure of High Quality Survivorship Care, a scale comprised of 3 domains and 9 components of quality prioritized by survivors, based on feedback from surveys and cancer survivor focus groups. Comprising the first domain, “Informed and Grounded Patient,” are 2 quality components: mental health and social support, and information and resources on survivorship care. Domain 2, “The Patient-Provider Alliance,” is made up of 3 quality components: empowered and engaged patients, supportive and prepared clinicians, and open patient-clinician communication. Care coordination and transitions, access to full spectrum of care, practical life support, and having a medical home comprise Domain 3, “Supportive Health and Wellness System.”
Specialized Models Excel
Overall, all 3 models performed well in terms of providing survivors with a medical home and communicating with patients. However, all 3 models performed poorly in the areas of mental health and social support, and practical life support.
The specialized models, whether consultative or longitudinal, performed particularly well with regard to providing information and resources, having supportive and prepared clinicians, having open patient-provider communication, and helping patients feel empowered and engaged. “This observation that the specialized models both outperform the oncology-embedded model is backed up by statistical analysis,” explained Dr Raskin. “No statistical difference in outcomes was observed between the specialized models, but all of the significance is driven by the differences between the specialized and oncology-embedded models.”
The oncology-embedded model significantly underperformed compared with both specialized models in 7 of 9 components. “Embedded models are typically led by the treating oncologist who historically focuses on treating sick patients and less on providing follow-up,” she explained. “Specialized models focus predominantly on providing services and referrals for survivors, which may explain their high scores.”
Patients reported that the provision of information and resources and referral for emotional concerns is relatively high across all models, but fewer programs are providing emotional and social support to deal with life after treatment or changes in relationships. According to patient feedback, providers can improve in the following areas: helping survivors to problem solve, setting clear plans to manage follow-up care, and working with patients in the transition to primary care, as only 11% of survivors across all models reported having worked with their provider to plan that transition, she noted.
The researchers concluded that certain models of survivorship care are better at specific domains of patient-centered quality, suggesting cancer centers should consider their organizational context and their patients’ needs before committing to a particular model of care.
“We know that higher quality of care doesn’t necessarily translate to better survivor outcomes, and that will be the next phase of our analysis,” said Dr Raskin. The team plans to examine quality and patient-reported outcomes by model and care delivery characteristics.
The term “patient-reported outcome” (PRO) has become ubiquitous in the realm of cancer care. According to Ethan Basch, MD, MSc, PROs are still in the early stages of being integrated [ Read More ]