Prostate cancer is the most commonly diagnosed cancer in men after skin cancer.1 The American Cancer Society estimates that approximately 233,000 new cases of prostate cancer will be diagnosed and approximately 29,480 men will die of the disease in 2014.1 Although most prostate cancer is caught early and often successfully treated, a significant percentage of men eventually progress to advanced disease.1 Fortunately, recent studies have demonstrated that these men are now living longer than ever.2,3 Although this is encouraging, managing the disease over a longer period of time may create physical and emotional burdens, impacting the quality of life for both patients and their caregivers.
A recent national survey of men with advanced prostate cancer and the caregivers of men with advanced prostate cancer sheds light on some of the needs, concerns, and priorities related to coping with the disease long-term and suggests how health care professionals may help patients and caregivers manage them. Astellas Pharma US Inc and Medivation Inc commissioned the Advanced Prostate Cancer Patient and Caregiver Burden of Illness Survey through the research firm Harris Interactive, and sponsored four leading cancer advocacy and education organizations to collaborate on the initiative: the Association of Oncology Social Work, CancerCare, Prostate Health Education Network, and Us TOO Prostate Cancer Education and Support Network. Survey data are not weighted, and thus are only representative of people who qualified for and completed the survey. For the purposes of this survey, caregivers was defined as anyone in regular contact with qualified patients who assist with their care and/or help them make treatment decisions.
A NATIONAL SURVEY: THE RESULTS
A total of 91 men, age 60 years and older, with advanced prostate cancer and 100 caregivers of men with advanced prostate cancer completed the survey, which was designed to evaluate the physical and emotional impact of advanced prostate cancer on both patients and caregivers. More than 50% of the patient respondents reported living with a prostate cancer diagnosis for at least 6 years and nearly one third (33%) reported living with a diagnosis for more than 10 years.
Caregivers who participated in the survey reported an average caregiving duration of nearly 5 years. Sixteen percent reported that they have been providing care for more than 8 years. Thirty-eight percent of caregivers reported caring for a father, 23% for a spouse/partner, 12% for a grandfather, 10% for a father-in-law, 9% for a friend, and 5% for another relative.
Patient concerns Patient respondents to the survey expressed the most concern around their ability to continue living their lives fully and about becoming a burden. Sixty-three percent of patients who participated in the survey said they are concerned or very concerned about their ability to continue participating in the activities they enjoy, and 59% expressed this same level of concern around becoming a burden to their family and friends. By comparison, 43% of patient respondents reported having the same level of concern about dying.
Patients who participated in the survey also expressed loneliness and feelings of isolation. Forty-one percent of patient participants said they do not feel like people understand what they are going through in terms of managing and treating their prostate cancer, and 45% reported they keep silent about their prostate cancer and treatments. Although many patient respondents reported feeling hopeful about their disease (58%), the greatest percentage said their disease makes them feel uncertain (62%). Among other responses, 33% said they feel fearful, 32% feel sad, and 20% feel lonely or alone. Patient participants reported conflicted feelings with regard to the information that is available to them. They said they are eager for the information, yet more than one-third of the patients (35%) said there is too much information available about prostate cancer to understand it all. (See Figure 1.)
Caregiver concerns Caregivers who participated in the survey—some of whom are elderly themselves (19% were 65 years and older) or have full-time work/family responsibilities—expressed a high degree of stress associated with their roles. Eighty-five percent reported that caring for someone with prostate cancer created stress/anxiety in their day-to-day life related to the patient’s well-being, and 73% said there are days when they feel overwhelmed caring for someone with advanced prostate cancer. Caregivers also expressed anxiety about their long-term caregiving responsibilities. Among the caregivers surveyed, 73% said they are concerned or very concerned about their ability to continue providing care over a long period of time.
Similar to the patient survey respondents, caregivers expressed interest in having more information available to them. In terms of information priorities, 64% of caregiver participants said they strongly agree that they would like more information about treatment options available, 53% want to know how to help their loved one cope with the physical side effects of treatment, and 51% want to understand how specific treatments work in the body. In addition, caregivers demonstrated a clear need for additional support as well as guidance around where/how to find desired information: 47% of caregivers said there is too much information about prostate cancer to digest it all, but 86% of caregiver participants said they would like more information to be available to them. (See Figure 2.)