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Supporting the Patient Voice in Patient-Centered Care

October 31, 2016

"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. 

What does patient-centered care mean to you? 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.

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

Core concepts of patient-centered interactions

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

What Patients’ Voices Are Telling Us: Barriers to Patient-Centered Care

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.

Cultivating Patient-Centered Interactions and a Culture of 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

Tips to Share with Patients

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

  • Asking questions
  • Offering opinions
  • Stating beliefs and preferences
  • Sharing goals
  • Doing your own research about your health
  • Accessing and reviewing your medical record
  • Introducing new topics for discussion
  • Sharing emotions and concerns
  • Being truthful
  • Following through with your care plan; if unable or unwilling to do so, tell your care team and discuss barriers and solutions
  • Telling their “health story” in context of their everyday life

The following section summarizes strategies for supporting patient-centered care for patients receiving I-O therapy for their cancer, as well as in general.

Tips for Talking with Patients About Immuno-Oncology Treatment Options4,9,17,19,25,26

  • Patients are increasingly aware of I-O treatment options, but will still have a need to discuss these options, receive additional information, and have questions answered.
  • Patients may be concerned about whether they are eligible to receive treatment with I-O therapy (e.g., biomarker status). Be prepared to discuss if I-O is the right treatment for them.
  • I-O agents have unique mechanisms of action, response profiles, and side effects. Provide information and answer questions about the likelihood and nature of response, response patterns, immune-related side effects/adverse events, expected long-term outcomes with I-O therapy, the risk and signs of recurrence, and palliative care.
  • Be able to discuss how I-O treatment is delivered and the proposed frequency and duration of care.
  • Teach patients and caregivers how to recognize side effects/adverse events and when, where, and how to seek help. Develop and/or provide a wallet card and/or symptom logs for your patients summarizing this information.
  • I-O agents are costly and patients will likely have concerns and questions about insurance coverage, reimbursement, and how to manage their portion of treatment cost. Know the answers to these questions or be able to steer patients to financial tools and resources (such as patient advocacy and industry patient assistance programs, charitable foundations, and financial advisors).
  • Help patients identify who will be in charge of various aspects of their care plan.
  • In addition to the approved I-O agents, others are under development. Stay abreast of clinical trial options and/or resources and discuss the possibility of clinical trial participation with your patients.
  • Provide patients with online resources with I-O specific information (industry, and public, professional, and patient advocacy organizations). For an example of I-O specific resources please refer to the Institute for Clinical Immuno-Oncology article, Patient Resource Roundup available at http://accc-iclio.org/resources/more-information-please-online-patient-resources-in-immuno-oncology/.

General Strategies to Support Effective Patient-Centered Communication4,9,19,26-28

  • Use evaluation tools to identify potential barriers (e.g., culture, language, health literacy, access) and utilize strategies to address them as best as possible.
  • Greet patients warmly.
  • Maintain appropriate eye contact throughout the patient’s visit.
  • Use straightforward, non-medical language.
  • Explain new concepts and terminology.
  • Mirror the words patients use to describe their health and concerns during the conversation.
  • Speak clearly and at a conversational pace.
  • Solicit the patient’s beliefs, values, preferences, emotional state, family, financial, work, and social context, and adjust and deliver information in a way that reflects an individual patient’s preferences.
  • Work with patients to identify treatment goals that are reflective of their hopes, preferences, and beliefs.
  • Review written cancer treatment and/or survivorship plans with patients and caregivers and encourage and actively invite patients to ask questions and participate in the conversation during visits.
  • Encourage your patients and their families to write down questions or concerns they may have and bring them to their appointments.
  • Prioritize and limit new information to 3 to 5 key points.
  • Be specific and repeat key points.
  • Use visual and/or decision aids such as pictures, illustrations, videos, web-based tools, or models to help present information and assist in shared decision-making.
  • Provide written summaries supporting what was said and highlight key points.
  • Utilize the ‘teach-back’ method to confirm patients understand information.
  • Offer reassurance, encouragement, and support, but be honest.

Additional Ideas to Support Patient-Centered Care4,9,17,19,26

  • Define and create a culture of patient-centered care.
  • Include patient perspectives in defining your practice’s vision for delivering patient-centered care.
  • Utilize the right technology and services to deliver it – when choosing these, consider input from the variety of stakeholders who will be using it.
  • Develop a vetted, patient/family/caregiver resource list to share with patients with community-based and online resources and tools to educate themselves about treatment options and care planning (e.g., NCCN Cancer Survival Toolbox).
  • Query your patients for resources they have found helpful – add them to your list if suitable.
  • Consider developing or providing patient education materials in easy-to-update print and online formats (for example, through a patient portal).
  • Develop or implement simple assessments to internally measure patient care/outcomes, experience, and satisfaction. When appropriate, incorporate suggestions and feedback in order to improve the patient experience.
  • At visits, check in with patients on issues such as: other medical issues or changes; treatment goals; quality of life, psychosocial, emotional, and financial concerns; advanced care directives/preferences; and recurrence and survivorship questions. Help connect patients with community resources that can help them manage issues that extend beyond just the clinical aspects of cancer care.
  • Keep other healthcare providers informed about what is going on with your patients.
  • Consider using symptom and distress screening tools or telephone- or computer-based patient symptom reporting.
  • Consider follow-up calls by clinical staff to assess symptoms and adverse events.
  • As I-O is an evolving science, share your knowledge with other members of the multidisciplinary care team.

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

References

  1. National Health Council. The Patient Voice in Value: The National Health Council Patient-Centered Value Model Rubric. 2016; http://www.nationalhealthcouncil.org/patient-centered-value-model-rubric-released. Accessed October 2016.
  2. Ponter P, Conlin G, Conway J, et al. Making Patient-centered Care Come Alive. JONA. 2003;33(2):9.
  3. Shaller D. Patient-Centered Care: What Does it Take? 2007; http://www.commonwealthfund.org/publications/fund-reports/2007/oct/patient-centered-care--what-does-it-take.
  4. Balough E, Ganz PA, Murphy S, et al. Patient-Centered Cancer Treatment Planning- Improving the Quality of Oncology Care. Summary of an Institute of Medicine Workshop. The Oncologist. 2011;16(12):6.
  5. The European Expert Group on Immuno-Oncology. Immuno-oncology: a policy action framework. 2014; http://www.ecpc.org/news-categories/policy-and-advocacy/132-ecpc-policy-initiatives-news/252-launch-of-the-immuno-oncology-policy-action-framework. Accessed October 2016.
  6. Carver C, Jessie A. Patient-Centered Care in a Medical Home. Online J Nurs. 2011;16(2):12.
  7. Heidenreich P. Time for a Thorough Evaluation of Patient-Centered Care. Circulation. Cardiovascular quality and outcomes. 2013;6:3.
  8. Epstein RM, Street RL, Jr. The values and value of patient-centered care. Ann Fam Med. 2011;9(2):100-103.
  9. Epstein RM, Street R. Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering. Bethesda, MD, 2007: National Cancer Institute.
  10. Herrin J, Harris KG, Kenward K, Hines S, Joshi MS, Frosch DL. Patient and family engagement: a survey of US hospital practices. BMJ Qual Saf. 2016;25(3):182-189.
  11. Hibbard JH, Greene J. What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013;32(2):207-214.
  12. Carman KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff. 2013;32(2):9.
  13. Levinson W, Lesser CS, Epstein RM. Developing physician communication skills for patient-centered care. Health Aff (Millwood). 2010;29(7):1310-1318.
  14. Schaeffer C. Talk to Me: Impove patient engagement; improve your cancer program. 2016; http://www.accc-cancer.org/oncology_issues/articles/JF16/JF16-Talk-to-Me.pdf. Accessed Oct, 2016.
  15. Cancer Support Community. Elevating the patient voice: Cancer Experience Registry 2013-2014. 2014; https://www.cancerexperienceregistry.org/. Accessed October 2016.
  16. Athena Health. Five Elements of a Successful Patient Engagement Strategy. 2014; http://www.athenahealth.com/~/media/athenaweb/files/whitepapers/patient-engagement-strategies-whitepaper. Accessed October 2016.
  17. Schaefer J, Van Borkulo N, Morales L, Coleman K, Bwonlee B. Safety Net Medical Home Initiative Implemenation Guide Series. Seattle, WA: Qualis Health and The MacColl Center for Health Care Innovation at the Group Health Research Institute;2013.
  18. Health Policy Brief: Patient Engagement. People actively involved in their health and health care tend to have better outcomes—and, some evidence suggests, lower costs. Health Aff. 2013:6.
  19. Institute of Medicine. Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis. Wahington DC: The National Academies Press; 2013.
  20. CancerCare. 2016 Patient Access & Engagement Report. http://www.cancercare.org/accessengagementreport. Accessed July 28, 2016.
  21. American Society of Clinical Oncology. The State of Cancer Care 2016: A Report by the American Society of Clinical Oncology. J Oncol Pract. 2016;12(9):45.
  22. Amsellem M, Suarez R, Wilson C. Informing and empowering cancer patients about immunotherapy: A psychoeducational workshop addressing needs in an emerging field. 2016 Annual American Psychosocial Oncology Society; 2016.
  23. American Hospital Association and Institute for Family-Centered Care. Strategies for Leadership: Advancing the Practice of Patient- and Family-Centered Care. http://www.aha.org/advocacy-issues/quality/strategies-patientcentered.shtml. Accessed October 2016.
  24. Association for Patient Experience. Your Role as a Patient. http://www.patient-experience.org/Resources/Patient-Info/Your-Role-as-a-Patient.aspx. Accessed October 2016.
  25. Agency for Healthcare Research and Quality. Be More Involved in Your Health Care: Tips for Patients. http://www.ahrq.gov/patients-consumers/patient-involvement/ask-your-doctor/tips-and-tools/beinvolved.html. Accessed October 2016.
  26. Institute of Medicine. Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care: Workshop Summary. Washington DC: The National Academies Press; 2011.
  27. Schaefer J, Van Borkulo N, Morales L. Safety Net Medical Home Initiative: Patient-Centered Interactions Implementation Guide Part 2: Engaging Patients in their Health and Healthcare. Seattle, WA: The MacColl Institute for Healthcare Innovation at the Group Health Research Institute and Qualis Health; December 2010.
  28. Pratt-Champman M, Kapp H, Willis A, et al. Catalyzing Patient-Centered Care. 2014; http://www.accc-cancer.org/. Accessed October 2016.
  29. Deloitte. 2013 Survey of U.S. Physicians: Physician perspectives about health care reform and the future of the medical profession. http://www2.deloitte.com/content/dam/Deloitte/us/Documents/life-sciences-health-care/us-lshc-deloitte-2013-physician-survey-10012014.pdf. Accessed October 2016.

Last review conducted on 08/29/2019.
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