"Patient-centered healthcare is care that is respectful of and responsive to individual patient preferences, needs, and values in context of their own social worlds. Patient centeredness is created by engaging, informing, and actively listening to people with chronic conditions at every point of contact from the research bench to the bedside and everywhere in between.” -- National Health Council1
The concept of modern patient-centered care has been around for nearly half a century. The most influential early foundational exponents of patient-centered care include Picker Commonwealth, the Institute for Family-Centered Care, and Planetree.2,3 Two key reports, Crossing the Quality Chasm: A New Health System for the 21st Century (Institute of Medicine , 2001) and Ensuring Quality Cancer Care (Institute of Medicine, 1999), as well as a landmark book Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care, reinvigorated the discussion about how actively integrating patients’ voices into their care resulted in improved quality of care and patient satisfaction, and reinforced the groundwork for efforts seen today.2
This article is focused on strategies cancer care teams can use to support patient-centered care and ensure individual patient voices are integrated into their management with immuno-oncology agents.
Patient Voices on What Patient-Centered Care Means to Them. Adapted from Cancer Support Community’s Cancer Experience Registry Question of the month: What Does Patient-Centered Care Mean to You. Available at http://cancersupportcommunity.org/patient-centered-care.
A cancer diagnosis can be overwhelming for most patients and their families. In addition to the potentially life-threatening nature of cancer, treatment planning and implementation is costly and complex, and cancer care is often fragmented.4 While immuno-oncology agents for the treatment of cancer are still in their relative infancy, they offer many patients the potential for long-term survival.5 Nonetheless, the journey for patients with cancer and their families is fraught with physical and emotional challenges, and the unique features of immuno-oncology (e.g., its response patterns and adverse event profile), create an even greater need for patients and their caregivers to be well-supported and engaged in their cancer care.
Although definitions of patient-centered care vary, most are based on the same common core concepts established decades ago (Table 1). These concepts emphasize strengthening the patient-clinician relationship; promoting communication, education, and shared decision- making; and delivering evidence-based care that honors and reflects patients’ values.6-8
A number of studies suggest that patients, including those with cancer, who take an active role in their healthcare journey may experience improved health outcomes, increased safety, satisfaction, and quality of life (QOL).2,7,9-14 Beyond clinical outcomes, studies have shown patients and their families care about psychosocial and physical functional status; health-related quality of life; well-being and life-style changes; survival; productivity; goals, expectations, and aspirations; and the financial impact and dealing with the stress of cancer.1,15
The value of patient-centered care has been espoused by numerous patient advocacy groups, professional organizations, and public and private stakeholders. Accordingly, the effective delivery of patient-centered care, frequently measured as patient satisfaction, comprehension, and impact on health behavior and disease outcomes, has sprung to the forefront of care delivery models (e.g., the Oncology Care Model). In addition, many of these measures have become components of accreditation, reimbursement, and payer programs, as well as public reporting systems (e.g., http://www.hospitalcompare.hhs.gov ).7-9,13,16
However, creating and delivering a culture of patient-centered care is not without very real issues and barriers. In general, in order for care to be effective, the diagnosis and treatment plan must be delivered in a culturally appropriate way that reflects, as much as possible, a patient’s belief systems of how they view illness, social context, and expectations for care.17
For clinicians, challenges may include time constraints, inadequate healthcare provider training, a lack of incentives, misjudging of patient preferences, cultural/language differences, and fragmentation of the cancer care delivery system.18,19 Likewise, patient involvement in care may be hindered by factors such as limited health and/or numeracy and literacy differences in spoken language, and discomfort discussing the impact of cultural, religious, and personal values on their treatment.17,20
For example, an estimated 30% of patients have limited health literacy, which can contribute to misunderstandings or poor understanding of disease management and treatment plans, and, in turn, lead to suboptimal clinical outcomes.17 Surveys can be used to collect information about basic patient needs and preferences (e.g., language), and the Agency for Healthcare Research and Quality (AHRQ) Health Literacy Measurement Tool can be used to assess literacy levels.17
Patient surveys have been instrumental in shedding light on patient satisfaction in regards to patient-centered care and indicate there is still room for improvement. For instance, the 2016 CancerCare Patient Access and Engagement Report found the vast majority of respondents were satisfied with the amount of attention their care team paid to most issues. However, while many patients understood their conversations with healthcare providers, nearly one-third of patients felt they had inadequate information about their cancer, the treatment benefit or goals, possible treatment side effects, and why the care plan was recommended.20
Additionally, despite having adequate information, approximately 40% of patients did not discuss symptoms and side-effects with their healthcare team on the grounds that they did not wish to be a “bother.”20 Similar findings were captured by the Cancer Experience Registry, in which 76% of patients reported receiving information about their treatment choices, yet less than half of these patients felt like they were knowledgeable enough, or had enough support to fully engage in their treatment decision.15
The CancerCare report also found fewer than half of patients felt they had adequate information on other aspects of their cancer care, including the impact of treatment on continuing work, the degree of home care that would be needed, the emotional impact of having cancer and undergoing treatment, and the burden of financial responsibility.20 Although respondents generally discussed treatment-related issues with their oncologist, they preferred their primary care physicians for conversations about lifestyle concerns.20 These discussion disconnects may complicate care coordination.
Beyond the clinical realm, patient survey responses confirm cancer care is expensive and navigating healthcare coverage is complex. Surveys have found that between 46%-58% of patients report feeling financially distressed during treatment; only half adequately understood their health care coverage; and only 25% reported applying for financial assistance.15,20 Additionally, due to cost-shifting and rising deductibles, patients are experiencing increased cost burden.21
As a result, many patients report resorting to care-altering strategies to reduce costs such as skipping or postponing appointments, skipping or modifying treatment doses, delaying seeking complementary treatment and/or psychological counseling or support, and cutting back on other expenses.15,20 Lastly, patients have expressed dissatisfaction with communication regarding new treatment options and clinical trials. Reports vary, but approximately only 12% to 33% of patients with cancer feel adequately informed about clinical trial opportunities.15,20
While data to evaluate patient opinion about immuno-oncology are still relatively scarce, according to a 2014 Cancer Support Community (CSC) online survey, only 34.8% of cancer survivors were familiar with the term immuno-oncology; however, 84% of respondents wanted to know more about this topic.22
The messaging from patient surveys indicates that while healthcare teams are involving patients in their care, the patient voice is still not being fully elicited, heard, and incorporated into delivering truly effective patient-centered care.
Patient-centered interactions and effective communication are at the heart of patient-centered care. These interactions are based on developing effective patient-provider partnerships where healthcare providers “are committed to working with patients and families…not simply doing things to or for them” in order to identify and ensure patients’ voices are reflected in the care they receive.17,23
Patient communication styles vary and are influenced by a variety of factors such as level of education, race/ethnicity, gender, and age. Patients who are able to engage in active communication behaviors are better able to share their needs, concerns, expectations, and perspectives.9 Examples of active patient communication behavior tips that clinicians can encourage patients and their family to use include:9,24
The following section summarizes strategies for supporting patient-centered care for patients receiving I-O therapy for their cancer, as well as in general.
Supporting and ensuring that the patient voice is heard is key to delivering patient-centered care. Not only can patient involvement improve outcomes and patient satisfaction, but also physician satisfaction. Indeed, a recent survey reported that physicians find the patient relationship the most satisfying aspect about practicing medicine.29
Cancer care is complicated and touches upon multiple realms of patients’ and their families’ worlds. As the approval and indications for I-O agents continue to expand, it will be important to refine patient-centered approaches that both reflect the unique features of immuno-oncology and incorporate lessons learned from documenting and measuring what matters to patients.
While practicing patient-centered care is not without its challenges, multiple resources are available to providers and patients to help delineate and guide the process, including the Association of Community Cancer Center’s Catalyzing Patient-Centered Care, the Safety Net Medical Home Initiative Implementation Guide Series, and the Institute of Medicine’s Patient-Centered Cancer Treatment Planning.4,17,28