Survivorship care models work, some better than others

Comparison of survivorship care models

Two-thirds of the large and growing population of cancer survivors are at least 5 years out from diagnosis, stimulating considerable discussion in the oncology community about how to best address their needs, according to Sarah Raskin, PhD, senior author on the second study and a research scientist at the Institute for Patient-Centered Initiatives and Health Equity at George Washington University Cancer Center, Washington.

“Yet, for a lack of cancer survivorship–specific guidelines from research or practice, cancer centers are increasingly developing survivorship care in a variety of ways, many of which are ad hoc or unproven as yet,” she said.

Dr. Raskin and her colleagues compared three emerging models of survivorship care: a specialized consultative model and a specialized longitudinal model – whereby patients have a single or multiple formalized survivorship visits, respectively, with care typically led by an oncology nurse-practitioner – and an oncology-embedded model – whereby survivorship is addressed as a part of ongoing oncology follow-up care, typically by the oncologist.

The investigators worked with survivors to develop the Patient-Prioritized Measure of High-Quality Survivorship Care, a 46-question scale assessing nine components of survivorship care that capture the health care priorities and needs that matter most to patients. Each component is rated on a scale from 0 (not at all met) to 1 (somewhat met) to 2 (definitely met).

Analyses were based on responses of 827 survivors of breast, colorectal, and prostate cancer who received care at 28 U.S. institutions using one of the above models and who were surveyed by telephone about the care received 1 week after their initial survivorship visit.

Results showed that survivors cared for under the three models differed significantly with respect to scores for seven of the nine components of quality of care, Dr. Raskin reported. The exceptions were practical life support, where the mean score was about 0.6-0.8 across the board, and having a medical home, where the mean score was about 1.8-1.9 across the board.

The specialized consult model of care had the highest scores for mental health and social support, information and resources, and supportive and prepared clinicians. The specialized longitudinal model of care had the highest scores for empowered and engaged patients, open patient-clinician communication, care coordination and transitions, and access to full spectrum of care. The oncology-embedded model had the lowest scores. Analysis of the tool’s 46 individual questions showed that patients cared for at institutions using the oncology-embedded model were significantly less likely than were counterparts cared for at institutions using the specialized models to report that the institution performed various activities such as offering a treatment summary, inquiring about the patient’s biggest worries or problems, and explaining the reasons why tests were needed (P less than .05 for each).

For some metrics, the overall proportion reporting that an activity was performed was low, regardless of the model being used. For example, only 48% of all patients reported being helped to set goals or make short-term plans to manage follow-up care and improve health, merely 24% reported being provided emotional and social support to deal with changes in relationships, and just 19% reported being referred to special providers for other medical problems.

“Overall, all three models are performing highly in terms of providing survivors with a medical home and communicating with patients. However, all three are performing quite low in terms of providing mental health and social support, as well as practical life support,” said Dr. Raskin.

“By model, we see that the embedded ongoing care model is significantly underperforming compared with both specialized models on seven of nine components, and we have some hypotheses from our early work with [Commission on Cancer]–accredited centers to explain this,” she added. “Embedded survivorship models have a lot of variability – many are high performers but others are low performers as compared with specialized programs. Embedded survivorship care models are typically led by the treating oncologist, who historically has focused on treating sick patients and less so on providing social supports for follow-up of well patients or ‘well-er’ patients. At the same time, specialized models focus predominantly on survivorship care and providing services and referrals for survivors, which may explain their high scores.

“We know that the higher quality of care measures presented here do not necessarily translate to better patient outcomes, and that’s actually going to be the next phase of our analysis,” she concluded.

The study sample may have had some selection bias, and it is unclear how well validated the tool was, according to Dr. Krzyzanowska, the discussant. Another issue was its assessment of quality of care at only a single time point.

Nonetheless, the findings show “that measuring quality of survivorship care from a patient perspective is feasible and valuable. We have already heard about [need for] survivorship plans in survivorship care, so certainly the work that was just presented is extremely important to help to fill some of these gaps,” she said.

“I’m not sure that we yet know what the optimal model of survivorship care is without the information of the other outcomes. Furthermore, there’s different survivor populations and different ways that health care is organized, so perhaps there isn’t really one optimal model, but the model has to fit with the context,” Dr. Krzyzanowska concluded. “That being said … the tool that they have created can be a great tool for existing survivorship care programs to assess and improve the quality of their care.”