An Advocate Conversation: CREATING AND ENSURING CONTINUUMS OF CARE IN OVARIAN CANCER

Transcription

1 An Advocate Conversation: CREATING AND ENSURING CONTINUUMS OF CARE IN OVARIAN CANCER

2 Introduction Each October, the Ovarian Cancer National Alliance (hereafter the Alliance ) convenes Advocate Conversation, a policy roundtable of diverse stakeholders across the ovarian cancer community. The Alliance is the leading advocacy organization for women and their families impacted by ovarian cancer. The goal of the workshop is to discuss current issues facing this community and draft an action plan to guide the Alliance s subsequent advocacy efforts. In 2014, key policy and subject matter experts from a number of disciplines attended this day- long event; participants included survivors, primary care providers, gynecologic and medical oncologists, nursing professionals, commercial payers, researchers, policy professionals and federal government partners. The resulting conversation was robust and informative. It focused on identifying the range of components and services comprising the ovarian cancer care continuum, as well as the policies, programs, efforts and changes necessary to promote the consistent delivery of that continuum of care to women with or at risk of ovarian cancer. The first component of the discussion centered on the identification of a wide range of components that should be standard of care in the prevention and risk reduction, diagnosis, treatment, quality of life management, survivorship planning and end- of- life care of women with ovarian cancer (Table 1). Notably, participants named several innovative components that often are overlooked in the care of women with ovarian cancer. These include: a guided life review coincident with diagnosis of ovarian cancer 1 ; the creation of an advanced care directive; psychosocial support for patients, caregivers and family members; and an emphasis on services for quality of life during treatment and survivorship, including palliative care, sexual health services and home care assistance. The second half of the roundtable focused on fitting the identified components into two continuums, a preventive services continuum (Figure 1) and a diagnostic, treatment and survivorship continuum (Figure 2). Participants actively engaged in a lively dialogue bringing forward their expertise and experiences both personal and clinical to inform both discussions. A coordinated, comprehensive care plan for women with or at risk of developing ovarian cancer Between 15 and 20 percent of cases of ovarian cancer are linked to genetic predisposition 2,3. Therefore, the preventive services continuum is designed to evaluate women for their risk of hereditary ovarian cancer and refer them for appropriate genetic services and follow- up care (Figure 1). At a yearly Well Woman examination, health care providers should take or update a woman s family health history (FHH) and evaluate it to assess her risk of hereditary cancer. If a woman is determined to be at low- risk, a detailed FHH should be updated and reevaluated annually 4. If she is determined to be at high- risk, she should be referred for genetic services, including genetic counseling and then potentially testing for BRCA1/2 or Lynch Syndrome mutations, depending upon her FHH 5. A woman with high- risk mutations 1 Several models of conducting a life review exist, such as a guided, recorded interview or via telephone. For review, please see: Marchand, L. Integrative and complementary therapies for patients with advanced cancer. Annals of Palliative Medicine : Pal T, et al. BRCA1 and BRCA2 mutations account for a large proportion of ovarian carcinoma cases. Cancer : Kanchi, K.L. et al. Integrated analysis of germline and somatic variants in ovarian cancer. Nature Communications : American College of Obstetricians and Gynecologists. Well- Woman Visit Committee Opinion (Reaffirmed 2014). 5 NCCN Clinical Practice Guidelines in Oncology. Genetic/Familial High- Risk Assessment: Breast and Ovarian. Version

3 and her health care providers should then assess her age, reproductive and family planning priorities, and cultural values to determine if she should be referred for risk- reducing surgeries (such as salpingo- oophorectomy, fertility preservation or chemoprevention) or if she should be monitored by a CA- 125 blood test and trans- vaginal ultrasound 6,7. Concomitantly, high- risk women should be referred for appropriate psychosocial support services. All women, regardless of risk, should continue to receive regular primary care, including discussion of ovarian cancer symptoms and prevention, as well as management of their health and any comorbidities (Figure 1). The diagnostic, treatment and survivorship continuum creates a comprehensive, multidisciplinary framework to deliver high quality cancer care that fully meets patient needs and expectations (Figure 2). At the point of ovarian cancer diagnosis, women should receive a number of services alongside their diagnostic work- up and treatment planning, including a life review and the initiation of psychosocial support and quality of life services. Women suspected of having ovarian cancer should be referred to a gynecologic oncologist for their surgical management, which frequently involves cytoreductive or debulking (aka removal of all visible tumor) surgery. Treatment should be in accordance with clinical practice guidelines 8, as women who receive standard of care have far better outcomes than women who do not 9. However, despite this evidence, participants highlighted studies showing that the majority of women with ovarian cancer do not receive guideline- adherent care 10. Following debulking surgery by a gynecologic oncologist, patients should begin disease- directed chemotherapy treatment in accordance with guidelines. To help patients manage the side effects of their chemotherapy and surgery, treatment should be integrated with palliative and supportive care from the outset in accordance with the model set forward by the National Consensus Project for Quality Palliative Care 11. Integration of palliative care into active treatment results in better patient outcomes, reduces anxiety and depression among patients, and provides potential survival benefits 12,13. Furthermore, both the American Society of Clinical Oncology (ASCO) 14 and National Comprehensive Cancer Network (NCCN) 15 recommend early palliative care integration into treatment. Finally, participants emphasized that physicians should educate their patients about what palliative care is and what it is not to dispel the false notions common among patients that it is only for end of life care. 6 American College of Obstetricians and Gynecologists. ACOG Practice Bulletin #103: Hereditary Breast and Ovarian Cancer Syndrome. Obstet. Gynecol. 2009; 113: NCCN Clinical Practice Guidelines in Oncology. Genetic/Familial High- Risk Assessment: Breast and Ovarian. Version NCCN Clinical Practice Guidelines in Oncology. Ovarian Cancer Including Fallopian Tube Cancer and Primary Peritoneal Cancer. Version Bristow et al. Adherence to Treatment Guidelines for Ovarian Cancer as a Measure of Quality Care. Obstet Gynecol : Bristow et al. Adherence to Treatment Guidelines for Ovarian Cancer as a Measure of Quality Care. Obstet Gynecol : National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care, Second Edition Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life Temel et al. Early Palliative Care for Patients with Metastatic Non- Small- Cell Lung Cancer. NEJM : American Society of Clinical Oncology. ASCO Provisional Clinical Opinion: The Integration of Palliative Care into Standard Oncology Care. JCO : NCCN Clinical Practice Guidelines in Oncology. Palliative Care. Version

4 Given its focus on addressing symptoms and side effects from treatment, and that some treatment has lasting negative effects (e.g., neuropathy, pain), palliative care remains an essential component of survivorship care 16. Following the completion of a treatment protocol, ovarian cancer patients should transition to one of two tracks, dependent upon projected outcomes and past treatment. Patients who are designated to have no evidence of disease should be transitioned to survivorship care. This begins with the creation of a survivorship planning document outlining continued palliative care, recurrence screening, referral for genetic services (if not already complete), psychosocial support, management of any late or long- term side effects and a plan for the transition back to a primary care physician (Table 1, Figure 2). Survivors may undergo maintenance therapy to lower their risk of disease recurrence or extend progression free survival. Unfortunately, given the high rate of ovarian cancer recurrence, many patients will transition from survivorship care back into the treatment/palliative care portion of the continuum. When active treatment is determined to be no longer effective or desired, as agreed upon by the patient and her provider, women should transition to end- of- life care in accordance with their life review and advanced care directive. Palliative care should continue throughout this transition to manage women s side effects and late effects of their treatment. Participants emphasized that the transition to end- of- life care should occur earlier and expressed frustration regarding the current paradigm of providing women with aggressive disease directed chemotherapy right up until the few days before their death 17. Instead, the transition to end- of- life care should hinge on shared decision making between a woman, her family and her health care team. Ideally, women at this phase of the continuum should be offered a variety of services tailored to their individual needs, such as home care for managing the activities of daily living, in- home hospice or inpatient hospice. Contemporaneously, women and their caregivers who are receiving all of these services also should be provided psychosocial support, 18 care centered on increasing quality of life and the regular management of a other heath conditions and comorbidities. Roadblocks on the path to the ovarian cancer care continuum Numerous barriers impede the delivery of quality care to women with or at- risk of developing ovarian cancer. Many of these obstacles are not unique to ovarian cancer, but are common refrains across the cancer community workforce issues; resources and reimbursement; transportation; affordability; insufficient knowledge, education and awareness among patients and providers of standard of care; and a lack of coordination between providers. Though these issues have been discussed at great length elsewhere, many are particularly burdensome or acute for the ovarian cancer community. Ovarian cancer is a complex and difficult disease due to the fact that it is often diagnosed at an advanced stage, spreads to multiple organs within the abdominal cavity or beyond, is prone to multiple recurrences and often has a hereditary risk component. Therefore, much of ovarian cancer care necessitates the involvement of specialists, such as gynecologic oncologists, physical therapists and genetic counselors. The involvement of specialists leads to access issues for many patients, particularly 16 Economou, D. Palliative Care Needs of Cancer Survivors. Seminars in Oncology Nursing : Wright, et al. End- of- Life Care for Older Patients with Ovarian Cancer Is Intensive Despite High Rates of Hospice Use. JCO E- pub ahead of print. 18 Institute of Medicine. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs

5 low income and rural patients. Furthermore, many patients do not have access to specialty providers, palliative care, psychosocial support services and home care, or they face long wait times and other challenges in trying to secure such care. Insufficient resources and reimbursement pose additional challenges in the provision of ovarian cancer care. Some aspects of quality cancer care, including patient education, survivorship planning, genetic counseling and psychosocial support care, are not reimbursable under current Medicare and commercial payer fee- for- service models. There are additional structural barriers impeding patient care; for example, roundtable participants cited the demand for the usage of, and billing for, available operating room time within acute care hospitals as a reason that some women with ovarian cancer are not optimally debulked, a lengthy and tedious surgery, but one that makes a significant difference in life expectancy of patients 19. Finally, patients cited a lack of coordination between their health care providers as a factor in receiving low quality cancer care. Ovarian cancer patients need a true multidisciplinary, coordinated approach to their health care with smooth transitions and interactions between oncologists, nurses, palliative care specialists, physical therapists, social workers, mental health professionals, pharmacists and primary care providers. Bridging the gap: multidisciplinary solutions to connect more women to the continuum Participants identified and recommended a number of potential policy solutions that could improve the number of women receiving care that comports with the comprehensive care continuums set forth in Figures 1 and 2. Among these potential solutions are the role of technology in streamlining care delivery, increased usage of navigators and facilitators in connecting women to care, and oncology payment reform to drive practice changes. In the following section, we will address each of these interventions individually. Technology Recent technological innovations in health care delivery and record keeping hold great potential to streamline many of the access issues that ovarian cancer patients face. Telemedicine, electronic health records and patient portals could all be used to improve patient care. Telemedicine can connect rural patients and their community- based providers with genetic counselors and gynecologic oncologists, who tend to be clustered in larger cities or major academic medical institutions. Electronic health records (EHRs) hold the potential to decrease administrative burden and increase coordination between providers. However, they must be configured to do so by the health care system implementing them. Furthermore, EHRs must be compatible within and across health care systems to ensure that women receive comprehensive coordinated care, regardless of the site of that care. Finally, EHRs have the potential to aid in the collection and analysis of family medical histories to identify women at- risk of hereditary cancer syndromes. At present, many providers do not have the expertise or 19 Engelen, MJ et al. Surgery by consultant gynecologic oncologists improves survival in patients with ovarian carcinoma Cancer. 106:

6 tools available to take and interpret a complete family history, potentially preventing high- risk women from being referred appropriately for genetic services. Integration of family history tools into EHRs could improve risk- assessment for hereditary cancer risk, as well as for other genetic conditions. In some hospitals and physician practices, patient portals are used to track appointments, report laboratory results to patients and provide for secure patient electronic communication with their health care providers all of which are essential components of active treatment and survivorship care. As one of our participants mentioned, survivorship is when the hard part [of ovarian cancer] begins. Following the end of their primary treatment, ovarian cancer survivors desire a clearly defined plan of surveillance, possible maintenance therapy and management of late and long- term side effects. They also wish to maintain communication with their oncology care team. Patient portals could provide a conduit for survivorship care planning and management for some patients. Patient Navigation The call for increased patient navigation is not new 20, yet many women are left to chart the waters of an ovarian cancer diagnosis by themselves. Roundtable participants highlighted workforce barriers preventing some patients from having a designated nurse navigator supplied by the health care system., Many private insurance companies do provide insurance facilitators, and some participants dispelled the myths that these insurance facilitators are focused on minimizing costs, suggesting that they can act as advocates for patients within an insurance company. Furthermore, participants recommended that health professional organizations and patient advocacy groups work to make patients aware of these services and promote their adoption. Participants also highlighted the role of community health care workers and patient advocacy organizations in providing patient navigation services, given that these groups are often seen as trusted voices within a community. Payment Reform Participants discussed a number of different models of payment reform that could drive practice change in oncology care and connect more women with continuum services by realigning financial incentives and reducing administrative burden on health care providers. There was no consensus with respect to a single approach. Participants referenced the testing of alternative payment models being undertaken by various groups 21,22,23 and urged consideration of a blend of different strategies. For example, survivorship care planning might best be reimbursed either through the creation of a specific CPT code for payment under fee- for- service systems or included in a bundled payment for a treatment episode of care. Attendees also discussed changing the payment system in a manner that would help ensure more women and caregivers receive psychosocial support services, such as providing a global payment to a health care system that includes resources, incentives and quality measures that address psychosocial 20 Reviewed in Hopkins, J and Mumber, MP. Patient Navigation Through the Cancer Care Continuum: An Overview. JCO : Society of Gynecologic Oncology. Creating a New Paradigm in Gynecologic Cancer Care: Policy Proposals for Delivery, Quality and Reimbursement Available at: content/uploads/2012/09/practice_summit_report_final.pdf 22 American Society of Clinical Oncology. Consolidated Payments for Oncology Care: Payment Reform to Support Patient- Centered Care for Cancer Available at: pdf 23 Center for Medicare and Medicaid Innovation. Preliminary design for an oncology- focused model

7 support within the bundle. Finally, attendees advocated for an episode of care based payment for hospice and home care services with sufficient resources so that women receive adequate numbers of visits and time with these providers. Under the current fee- for- service and some capitation models, many women are not connected to the care they need, often because they do not qualify or there are perverse incentives keeping them from accessing that care (for example, women receiving chemotherapy even for palliation encounter multiple barriers to accessing hospice services). Participants urged greater flexibility with the requirements for certain types of services and innovative payment systems that incentivize connecting patients with the right care at the right time in the right setting. Conclusion In the months ahead, the Alliance will begin incorporating some of these recommendations into our advocacy efforts, including leveraging our relationships with Congress, federal agencies, health professional organizations, payers and the wider patient advocacy community. Initial projects will include the development and dissemination of patient- focused materials that can empower women to ensure they receive the best possible care along the entire continuum. Specific actions may include the development of a Survivorship Planning Template, which will allow women to kickstart conversations with their oncology teams as they transition from active treatment to survivorship care. Likewise, the development of materials for patients delineating options for oncology care navigation, such as connecting with community health programs, nurse navigators and insurance facilitators, could help ensure that women are aware of resources that could facilitate connection to the entire spectrum of services they require for their care. The Alliance will continue to engage in discussions with the broader cancer community, federal agencies and health professional societies in the vetting and creation of alternative oncology payment models that drive practices to provide patients with quality multidisciplinary, comprehensive and coordinated cancer care. These efforts to develop new payment models will be tied to measurable quality indicators to ensure that payment actually connects women with quality, affordable, comprehensive ovarian cancer care. We look forward to seeing these models implemented and women receiving the care they deserve. Authorship and Acknowledgements The manuscript and accompanying graphics were solely created by staff of the Ovarian Cancer National Alliance, including: Laura M. Koontz, PhD, Director of Policy Lauren M. Matthews, PhD, Public Policy Fellow Calaneet H. Balas, Chief Executive Officer The Alliance would like to thank all of the participants in the Advocate Conversation III workshop for their informative and enlightening discussion. We also thank Emily Ko, MD, Patti Forest, MD, Robin Cohen, RN, BSN, OCN, Saône Crocker, Patricia Goldman, Diane Rader O Connor and Ilisa Halpern Paul for their review of the manuscript. The Alliance further thanks its Board of Directors for its continued support of this program.

8 Table 1: Components of Ovarian Cancer Care Prevention and Risk Reduction Gynecologic cancer symptom education Family health history risk assessment Appropriate referral for genetic services, including counseling and BRCA1/2, Lynch testing (potentially via telemedicine) CA-125 and trans-vaginal ultrasound screening for high-risk women Prophylactic salpingo-oophorectomy Chemoprevention Diagnosis CA-125, trans-vaginal ultrasound, CT scans, and possible triage testing (e.g. OVA-1) Surgical evaluation and tumor staging Life review at the point of diagnosis, including creation of an advanced care directive Treatment Optimal debulking by a gynecologic oncologist Intraperitoneal chemotherapy, if indicated; otherwise, intravenous chemotherapy Possible maintenance therapy following no evidence of disease designation Quality of Life, Palliative and Home Care Nutrition counseling Fertility preservation, if applicable Sexual health services Physical and occupational therapy Complementary therapies, such as massage, reflexology, acupuncture Pain, symptom, and side-effect management (e.g. neuropathy) Home care for bandages, port, and -ostomy bag maintenance Wound healing Lymphedema treatment Fatigue Counseling Psychosocial Support for Patients and Caregivers Appropriate referral to mental health and social work services Referral to a patient navigator and/or insurance facilitator Linkage to advocacy organizations, support groups Pastoral care Respite care for caregivers Transportation Financial Assistance (via foundations or through appropriate government programs) Child care Survivorship Care Creation of a survivorship care planning document Recurrence screening Management of late effect and long-term side effects End of Life Care Appropriate end-of-life conversations and priority assessment Appropriate referral to hospice care, either at home or inpatient

9 Figure 1: Preventive Services Continuum Annual Well Woman Exam with Hereditary Cancer Assessment HIGH RISK Genetic Services: Counseling and Testing * Psychosocial Support Monitoring and/or fertility preservation, chemoprevention Risk-reducing surgeries and reconstruction LOW RISK: Repeat well woman exam and update family health history annually Regular Management of Health and Comorbidities * assess age, reproductive and family planning priorities, and cultural values in coordination with the patient

10 Figure 2: Diagnostic, Treatment and Survivorship Continuum Diagnosis End of Active Treatment transition to maintenance, survivorship and/or palliative care Recurrence Death Diagnosis * Treatment Palliative Care & Home Care Possible Maintenance Therapy Survivorship Care Palliative Care Psychosocial Support for Patients, Survivors and Caregivers Primary Care End of Life End of Life Care Care Services for Quality of Life Regular Management of Health and Comorbidities * denotes Life Review