ZERO - The End of Prostate Cancer (ZERO) and the Patient Access Network (PAN) Foundation appreciate the opportunity to describe the holistic approach that our organizations use to address the needs of patients with advanced prostate cancer along with the needs of their caregivers and family members. Our unique model shows how 2 nonprofit charitable organizations can join forces to provide a full range of support services which have been shown to help patients and their families. ZERO, which is focused on fostering the first generation without prostate cancer, has the educational resources and support services to help men with prostate cancer, their caregivers, and their loved ones make more informed decisions. The PAN Foundation is an independent patient assistance foundation that provides financial assistance to underinsured patients who enroll in its castrate-resistant prostate cancer (CRPC) assistance program—1 of nearly 60 disease-specific cost-sharing programs offered by the PAN Foundation.1 Combined with palliative and supportive care, this comprehensive approach improves the prostate cancer journey for many patients.
WHAT IS PALLIATIVE CARE?
The National Cancer Institute defines palliative care as “care given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer.”2 Initiated at the time of diagnosis and extending throughout the course of illness, palliative care is usually provided by a specialist who may be a doctor working with a multidisciplinary team of healthcare professionals, such as other specialist doctors, nurses, registered dieticians, pharmacists, and social workers, who address the emotional, physical, practical, and spiritual issues of the patient and family members as needed.2
PROSTATE CANCER PATIENTS BENEFIT FROM PARTNERSHIP BETWEEN 2 NATIONAL NONPROFIT ORGANIZATIONS
ZERO provides education and support to men and their families diagnosed with prostate cancer, regardless of stage. Aware of the overwhelming and frightening impact of a cancer diagnosis, ZERO provides newly diagnosed men with information on prostate cancer, including treatment options, with the objective of making them comfortable discussing their disease with their doctor and ultimately making treatment decisions. ZERO’s support extends throughout the prostate cancer journey.
Recognizing that some of these men are underinsured and in need of financial assistance to cover the cost-sharing amounts required by Medicare and private insurers, ZERO partnered with the PAN Foundation, which has a CRPC copay assistance program for underinsured patients with income less than 500% of the Federal Poverty Level (approximately $59,000 for an individual or almost $80,000 for a couple).3
Together, ZERO and PAN offer educational and financial support for men and their caregivers at different points along the prostate cancer journey. In addition to assisting patients with becoming better informed, the educational resources of ZERO help patients cope with life following treatment. The financial assistance provided by the PAN Foundation to men who are refractory to hormone therapy removes the barrier of unaffordable cost-sharing amounts that prevents them from accessing critical therapies.
The comprehensive approach offered by ZERO and PAN for prostate cancer includes the key elements that improve patient outcomes. For example, researchers have demonstrated that an informed patient, who can discuss the pros and cons of treatment options with his doctor, can have a positive impact on the quality of care and outcomes.4 Similarly, eliminating financial barriers such as cost-sharing amounts for specialty drugs improves patient adherence to treatment regimens.5
The harsh reality for many people today is that they may not be able to afford the treatment and cures that modern medicine has made possible unless they receive help from charitable co-payment foundations. The collaboration between ZERO and the PAN Foundation represents an ideal model that can be adopted by other nonprofit patient organizations and patient financial assistance foundations to provide comprehensive services and support to complement the professional services provided by a palliative care team.
COMPLEMENTING PALLIATIVE CARE SERVICES
ZERO helps patients and caregivers navigate the journey that begins with the diagnosis of prostate cancer. Understanding that patients may feel unprepared, anxious, or overwhelmed after learning they have prostate cancer, ZERO provides resources and services tailored to meet the unique needs of patients and their caregivers. Specically, ZERO emphasizes the importance of learning the “language of prostate cancer,” including terminology associated with types of diagnostic tests; tumor characteristics; and the appropriate treatment options available based on the stage, grade, and risk category of the individual’s prostate cancer. This knowledge will embolden patients and their caregivers to ask appropriate questions about the diagnosis and treatment options as they choose a healthcare team to support the journey.
Choosing a Healthcare Team
ZERO reminds men with newly diagnosed prostate cancer that they have a choice of who manages their care. ZERO’s educational resources emphasize the need for a patient to find a team they trust with making decisions that align with their best interests and preferences. Most men learn they have prostate cancer from a urologist, who typically has been involved with confirming the diagnosis, either through biopsy or imaging. Urologists, many of whom perform prostate cancer surgery and some of whom have oncology and/or radiology training, play a major role in managing the care of patients with prostate cancer, including surgery, radiation therapy, hormonal therapy, treatment of advanced disease, clinical trials, and active surveillance.
Value of a Multidisciplinary Approach
Recognizing the range of emotional, physical, and practical issues associated with cancer diagnosis and treatment, ZERO encourages men to consider seeking help from a multidisciplinary medical team. Composed of healthcare professionals from different specialties, members of a multidisciplinary team work together to suggest a treatment plan based on an individual’s diagnosis, health history, and preferences, factors known to be associated with improved health outcomes and quality of life.
In the absence of a multidisciplinary team, ZERO suggests that newly diagnosed patients, even those diagnosed with a very early stage of the disease, consult with an oncologist so they get a complete understanding of all available treatments, the effectiveness of treatments, and the options available if the cancer returns.In a recent survey by ZERO, only 41% of men with prostate cancer were referred to an oncologist at some point during the prostate cancer journey.
The comprehensive set of educational resources and services, along with cost-sharing assistance, complements the range of integrated services provided by the team of palliative care professionals.
INSIGHTS INTO THE PROSTATE CANCER JOURNEY
Between November 20, 2013, and January 21, 2014, ZERO conducted a patient education survey to obtain insights into the prostate cancer journey from diagnosis to treatment, survival, and years of active surveillance, which saw participation by more than 1400 patients with prostate cancer, survivors, and caregivers (. Among the respondents, 59% indicated they had at some point been diagnosed with prostate cancer, and about one-third of them were undergoing treatment. The survey results provide unique insights into the experiences of prostate cancer patients, their families, and caregivers. In particular, the survey results identify the changing needs of patients and survivors at different points during and after their illness.
Additionally, the survey helped describe the needs of the caregivers (24% of survey respondents), which may or may not overlap with the needs of patients and survivors. Initially, more caregivers indicated they cared for a father; however, as disease severity increased, so did the percent of people caring for a husband/spouse/partner with stage IV prostate cancer. Seventeen percent of survey respondents identified that they were associated with the prostate cancer community but did not answer questions on prostate cancer experience.
ZERO’s survey results showed that men seek information on prostate cancer at the time of and after diagnosis.
• At the time of diagnosis, patients reported they had a need for information about prostate cancer, treatment options, and side effects. In fact, the survey found that 54% of patients made treatment decisions to avoid certain side effects. While they take care of their loved one, caregivers also strive to understand the disease and its treatment and they pursue resources for emotional support—40% of the caregivers reported experiencing a great deal of stress associated with caregiving.
• At later stages, both patients and caregivers want information on clinical trials, treatment options, and survivorship/life after treatment. Additionally, caregivers are interested in news and information about the prostate cancer community.
According to the survey, men diagnosed with prostate cancer identified ZERO as their preferred source for prostate cancer information, and digital and print materials, videos, blogs, and webinars were chosen as ideal outlets to deliver prostate cancer health education.
The survey found that doctors are a trusted resource for information about the specifics of prostate cancer, the treatment options, and the side effects of treatment. Nearly 80% of men who had been diagnosed with prostate cancer said they received information from their healthcare team, and most found it useful. However, the treatment decision is not made in a vacuum: more than half the patients in the survey reported that in addition to their treatment team, a spouse, children, a family member, or a friend had helped them make the decision. When asked to identify the factors that helped them make their treatment decision, 3 were cited by more than half of the respondents:
• 63% said they chose the treatment based on information from personal research.
• 54% said they chose the treatment because their doctor said it was the best choice.
• 52% said they chose the treatment that provided the best chance of survival.
A medical oncologist was reported as the physician primarily responsible for managing their treatment by 29% of patients in the survey. For the remaining 71%, the physician was either a urologist (53%), a radiation oncologist (14%), or a specialist other than an oncologist (4%) ().
Of the 71% of patients who did not see a medical oncologist, only 41% said that they had been referred to an oncologist at some point during their prostate cancer treatment. Taken together, the survey results suggest that 58% of the patients had seen an oncologist, including the 29% who were primarily managed by a urologic or medical oncologist and the 29% (ie, 41% of the 71%) who were referred to an oncologist at a later point.
The results suggest a significant opportunity exists to encourage men who are newly diagnosed with prostate cancer to consider involving a medical oncologist in the treatment decision making process and to consider the value that a multidisciplinary team can provide to both the patient and his caregiver ().
COMPREHENSIVE SUPPORT FOR ADVANCED PATIENTS WITH PROSTATE CANCER
The PAN Foundation and ZERO share the common goal of providing hope and help to men and their loved ones. We recognize that access to the most appropriate therapy can be hampered by a lack of information, and by financial obstacles such as unaffordable co-payment amounts. Men with advanced prostate cancer can benet from the robust patient support services offered by ZERO and the elimination of cost-sharing barriers by PAN. Dan Klein, is chief executive officer, Patient Access Network Foundation, Washington, DC.
Jamie Bearse is president and chief executive officer, ZERO - The End of Prostate Cancer, Alexandria, VA.
1. PAN’s assistance programs. http://www .panfoundation.org/disease-funds-main-page . Accessed March 13, 2015.
2. Palliative Care in Cancer. National Cancer Institute website. http://www.cancer.gov/cancertop- ics/factsheet/Support/palliative-care. Updated March 16, 2010. Accessed March 12, 2015.
3. Federal Register, 80(14). http://www.gpo .gov/fdsys/pkg/FR-2015-01-22/pdf/2015- 01120.pdf. Published January 22, 2015. Accessed March 13, 2015.
4. Kaplan AL, Crespi CM, Saucedo JD, Connor SE, Litwin MS, Saigal CS. Decisional conflict in economically disadvantaged men with newly diagnosed prostate cancer: baseline results from a shared decision-making trial. Cancer. 2014;120(1):2721-2727.
5. Eaddy MT, Cook CL, O’Day K, Burch SP, Cantrell CR. How patient cost-sharing trends af- fect adherence and outcomes: a literature review. PT. 2012;37(1):45-55.