New Survey Reveals US Men with Advanced Prostate Cancer Worry More about Burdening Family and Friends Than Dying

As men live longer with disease, survey findings suggest patients and caregivers need increased opportunities for open dialogue and more comprehensive support
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Astellas Pharma US, Inc. and Medivation, Inc. today announced results of a national survey of men with advanced prostate cancer and caregivers of men with advanced prostate cancer. Results showed that while patients who participated in the survey are generally optimistic, a good number may feel isolated in coping with their disease. Forty-five percent reported they keep silent about their prostate cancer and treatments, and 59 percent are concerned about becoming a burden to family and friends. By comparison, only 43 percent of patient respondents have the same level of concern about dying.

Caregivers who participated in the survey expressed a high degree of stress associated with their roles. Nearly three-quarters (73 percent) said there are days when they feel overwhelmed caring for someone with advanced prostate cancer and 85 percent said they experience stress or anxiety related to their loved one’s well-being. However, caregiver respondents are more concerned about helping their loved one cope with the physical and emotional effects of advanced disease (83 percent) than they are about their own physical or emotional health (58 percent).

Astellas Pharma US, Inc. and Medivation, Inc. commissioned the Advanced Prostate Cancer Patient and Caregiver Burden of Illness Survey through Harris Interactive, and sponsored four leading cancer advocacy and education organizations to collaborate on the initiative: The Association of Oncology Social Work (AOSW), CancerCare, Prostate Health Education Network (PHEN), and Us TOO Prostate Cancer Education and Support Network. The survey was conducted online among 91 men with advanced prostate cancer and 100 caregivers of such men, and was designed to evaluate the physical and emotional impact of advanced prostate cancer on both patients and caregivers.

“Little, if any, research has been completed to understand the current experience of U.S. men living with advanced prostate cancer or caregivers to these men,” said Thomas A. Farrington, founder and president of PHEN. “This survey provides much-needed information that will help us better support them, particularly as there is evidence that men are now living longer with advanced disease.”

More than 50 percent of patients who participated in the survey have been living with a prostate cancer diagnosis for at least six years. Nearly one-third of survey respondents (33 percent) reported living with a diagnosis for more than 10 years and 17 percent said they are currently living with another cancer diagnosis in addition to prostate cancer.

Caregiver respondents reported an average caregiving duration of nearly five years. Sixteen percent have been providing care for more than eight years.

Key findings from patients who participated in the survey reveal:

  •   *Forty-one percent do not feel like people understand what they are going through in terms of managing and treating their prostate cancer. Of these, 78 percent wish people better understood the stress of coping with prostate cancer, and more than half wish others understood the inconvenience caused by prostate cancer (59 percent) or the side effects of treatment (also 59 percent).
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  •   *While many patient respondents reported feeling hopeful about their disease (58 percent), the greatest percentage said their disease makes them feel uncertain (62 percent). Among other responses, 33 percent said they feel fearful, 32 percent feel sad, and 20 percent feel lonely or alone.
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  •   *There are disconnects in terms of patients’ treatment priorities and what they perceive to be the priorities of their physicians. While 66 percent of patients said that the level of discomfort they will experience is important or very important to them when choosing therapies, only 45 percent believe that this factor is important or very important to their physicians.
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  •   *Despite the older age of patients who participated in the survey (median age: 70 years), the Internet is an important source of information for them. After their physicians, it is the most highly used source of information for patients and caregivers who participated in this survey.
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Caregiver participants expressed considerable stress and anxiety, as well as a desire for more direct support networks. Key findings include:

  •   *Seventy-three percent said they are concerned or very concerned about their ability to continue providing care over a long period of time.
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  •   *Caregivers’ top areas of concern are their ability to help their patient cope with the physical and emotional effects of the disease (83 percent said they are concerned/very concerned about each).
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  •   *Among the 93 percent of caregivers who reported experiencing troublesome feelings as a result of caregiving (e.g., stress, sadness, fear, etc.), 58 percent said they rely most on family members to help relieve these feelings.
  • Among caregivers who expressed a desire for additional support, the most common request was for a support network or group.
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Survey findings also suggest that many patient and caregiver respondents are overwhelmed by the volume of information available to them. About one-third (35 percent) of patients said there is too much information available about prostate cancer to understand it all, and 47 percent of caregivers agreed with this statement. These findings suggest the need for navigation tools that will help guide patients and caregivers to the information that is most relevant to them over the course of the disease.

The American Cancer Society estimates that one in six US men will be diagnosed with prostate cancer in their lifetime and about 2.5 million are currently living with the disease. Recent studies and analyses have demonstrated that men with advanced prostate cancer are now living longer than ever. A 2013 study concluded, “The initial impact of treatments for men with [prostate cancer] is well reported in the literature. Less is known about the psychosocial needs of these men as their journey after diagnosis and treatment continues into months and years.”