Profits, public health, and patient care: caring for childhood cancer survivors Free

Advances in therapy over the last several decades have contributed to dramatic growth in the population of childhood cancer survivors [1]. Unfortunately, cancer treatments can harm developing organs, leaving some childhood survivors at high risk for subsequent chronic illness, including heart failure, lung disease, cognitive problems, reproductive health issues, and secondary cancers [2]. These long-term adverse effects can reduce the life expectancy of survivors compared to their age-matched noncancer peers and reduce their quality of life over the course of survivorship [3, 4]. The burden of chronic disease, psychosocial concerns together with the growing numbers of adult and young adult survivors of childhood cancer has led to a critical need for evidence-based models of care to improve clinical and behavioral outcomes for this population [5].

Benedict et al. (see this issue) [6] present the case for hospital-based specialty clinics as a care model for childhood cancer survivors. This work is very timely given shortages in institutional resources for survivorship care [7] and requirements for survivorship programs new accreditation standards by the American College of Surgeons Commission on Cancer, which include the delivery of a Survivorship Care Plan to cancer patients at the conclusion of their treatment [8]. The authors are to be lauded for their use of an interesting economic approach to provide data to motivate hospital administrators to invest in a survivorship clinic. The study presents a retrospective financial accounting analysis of procedures recommended by the “Children’s Oncology Group (COG) guidelines” at a single nonprofit institution in New York. The researchers report a potential “profit opportunity loss” of $348,700 (in 2019 dollars) over a period of 3 years from 2010 to 2012 due to nonuniversal use of recommended procedures and care. Further, they found that nonuniversal use of guideline care occurred among individuals who were uninsured and underinsured and racial minorities, arguably the most vulnerable groups. Motivating providers and patients to routinely undergo office visits and procedures to potentially detect disease that led to additional services (e.g., breast cancer screening with MRI generating biopsies and surgeries) was projected to increase hospital profits. The authors argue that the ability to capture this potential profit would lead to increased investment to support clinical operations, and this investment could then improve survivors’ outcomes.

This study takes an important first step in tackling difficult issues in the financing of cancer care for the rapidly growing population of individuals living after cancer [9, 10]. However, this research also raises several potentially troubling issues. First, and most concerning, is the potential for profit maximization approaches to collide with principles of public health and health equity. The goal of the former is to maximize profit regardless of outcomes, whereas public health perspectives are founded on the principle of maximizing the health of all individuals. The finding by Benedict et al. [6] that vulnerable populations have low adherence to COG guidelines, thereby generating the least profits, also raises a serious concern about the potential for profit maximization approaches to increase inequity in health outcomes. The authors posit that having more survivorship services would increase access for vulnerable groups. But the opposite could also occur if providers systematically were to deliver less care to uninsured and underinsured patients because they generate less profit than a well-insured survivor. Furthermore, the most vulnerable survivors are likely to experience greater financial hardship themselves and, thus, out-of-pocket expenses with additional surveillance, procedures, and office visits, creating additional individual-level burden (and greater inequity) [11].

There is an urgent need for clinical and behavioral research in cancer care delivery to address these critical survivorship issues. Several professional organizations have grappled with methods to address the needs of individuals living after cancer treatment. For instance, the American Society of Clinical Oncology (ASCO) has introduced eight models for delivering survivorship care in various settings and the National Comprehensive Cancer Network (NCCN) has developed general guidelines for survivorship care [12, 13]. The COG has developed guidelines specifically for childhood cancer survivors [14]. However, at present, there is a paucity of clinical trial and comparative effectiveness evidence on clinical and behavioral outcomes for different models of care for childhood (or adult) cancer survivors, so it is not clear how, or if, investments in resources might translate to improved patient outcomes [15]. Cancer survivorship care and research into cost-effectiveness of such care lag behind systematic evaluation of “rehabilitation” for other chronic diseases, including neurological, cardiovascular and orthopedic diagnoses [16, 17]. We also do not know how different models of care might affect equity in childhood cancer survivorship outcomes or whether health care system profits would be earmarked for investment in survivorship care. Finally, there is only limited evidence that the care recommended in the COG guidelines will improve patient clinical and behavioral outcomes. Greater evidence could reduce uncertainty about the most effective care and increase provider confidence in recommending screening and other services. It is encouraging, however, that cancer care delivery is now a National Cancer Institute priority so that we might soon have a body of evidence to address these issues and guide dissemination of care models that maximize the health and well-being of childhood and adult cancer survivors [18].

The economic approach chosen for the study by Benedict et al. [6] is consistent with their objective to quantify lost profit to their health care system over a short time horizon. Traditionally, the “value” of health care interventions is measured from a public health societal perspective based on evidence of effects on lifetime outcomes and costs incurred by the patient, provider, and payer [19]. For childhood cancer survivors, these costs might include out-of-pocket costs, insurance copays, travel costs, childcare expenses, and the cost of taking time off work to obtain tests and visit with a provider [11]. Cost-effectiveness analysis does not fully address patient perspectives [20], but it can be useful to complement financial analyses by quantifying downstream costs and clinical benefits. These data could help build a business case for health systems offering screening, long-term follow-up, and psychosocial services through survivorship programs. Hence, as data mature on survivorship care models, it will be important to assess their effectiveness from a clinical, behavioral, and economic perspective. It will also be crucial for economic analyses to consider modern therapy and the changing structure of health care systems.

Overall, the study by Benedict et al. [6] can catalyze dialogue and stimulate needed clinical and behavioral research on how to improve the health and well-being of individuals living after childhood cancers. Investment of profits in hospital-based survivorship programs could potentially improve clinical and psychosocial outcomes if this model of care is found to be feasible, effective, and cost-effective in future research. However, we need to be cautious about models of care that propose to leverage industry profits since profit maximization could lead to increased health care costs, higher financial burden to patients, and widening of health outcome inequities. Rigorous testing of the costs and outcomes of multifaceted, multilevel interventions should be a high priority for meeting the public health goal of maximizing healthy life for all cancer survivors.

Funding: This work was supported by a Cancer Prevention Research Fellowship sponsored by the American Society of Preventive Oncology and Breast Cancer Research Foundation (ASPO-17-001) to Dr. Jayasekera. This work was also supported in part by the National Institutes of Health under National Cancer Institute (NCI) Grants U01CA12958, U01 CA183081, and R35 CA197289 to Dr. Mandelblatt, P30CA051008 for the Survivorship Research Initiative at Georgetown Lombardi, and an American Cancer Society Research Scholar Grant RSG-16-018-01-CPHPS to Dr. Yeh.

Compliance with Ethical Standards

Conflicts of Interest: The authors declare that they have no conflicts of interest.

Authors’ Contributions

Conception: J.J., J.M., J.Y., K.G.; Drafting the article: J.J.; Critical revision of the article: J.M., J.Y., K.G.; Final approval of the version to be published: J.J., J.M., J.Y., K.G.

Ethical Approval: Not applicable.

Informed Consent: Not applicable.

References