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Men With Advanced Prostate Cancer Worry More About Burdening Family and Friends Than Dying, Survey Finds

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Key Points

  • Almost half of surveyed patients reported that they keep silent about their prostate cancer and treatments, and 59% are concerned about becoming a burden to family and friends, compared to 43% of respondents who have the same level of concern about dying.
  • Caregivers who participated in the survey expressed a high degree of stress associated with their roles and reported being more concerned about helping their loved one cope than they are about their own physical and emotional health.
  • Both sets of respondents reported being overwhelmed by the volume of information available to them, suggesting the need for navigation tools that will help guide patients and caregivers to information that is most relevant to them.

Men with advanced prostate cancer are now living longer than ever, and it is estimated that one in six U.S. men will be diagnosed with prostate cancer in their lifetime. However, little research has been conducted to understand the psychosocial needs of these men and their caregivers after diagnosis and as treatment continues into months and years.

The recently reported results of the Advanced Prostate Cancer Patient and Caregiver Burden of Illness Survey sheds light on this important area. According to the survey, although patients report feeling generally optimistic about their diagnosis, many men may feel isolated in coping with their disease. Forty-five percent of men reported that they keep silent about their prostate cancer and treatments, and 59% are concerned about becoming a burden to family and friends. By comparison, only 43% 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%) said there are days when they feel overwhelmed caring for someone with advanced prostate cancer, and 85% 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%) than they are about their own physical or emotional health (58%).

About the Survey

The Advanced Prostate Cancer Patient and Caregiver Burden of Illness 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.

More than 50% of patients who participated in the survey have been living with a prostate cancer diagnosis for at least 6 years. Nearly one-third of survey respondents (33%) reported living with a diagnosis for more than 10 years, and 17% said they are currently living with another cancer diagnosis in addition to prostate cancer.

Caregiver respondents reported an average caregiving duration of nearly 5 years. Sixteen percent have been providing care for more than 8 years.

Survey Results: Patients

Forty-one percent of patients surveyed reported not feeling like people understand what they are going through in terms of managing and treating their prostate cancer. Of these, 78% wish people better understood the stress of coping with prostate cancer, and 59% wish others understood the inconvenience caused by prostate cancer or the side effects of treatment.

While 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.

There are disconnects in terms of patients’ treatment priorities and what they perceive to be the priorities of their physicians. Although 66% of patients said that the level of discomfort they will experience is important or very important to them when choosing therapies, only 45% believe that this factor is important or very important to their physicians.

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.

Survey Results: Caregivers

Caregiver participants expressed considerable stress and anxiety, as well as a desire for more direct support networks. Seventy-three percent said they are concerned or very concerned about their ability to continue providing care over a long period of time. Their top areas of concern are their ability to help their patient cope with the physical and emotional effects of the disease (83% said they are concerned or very concerned about each).

Among the 93% of caregivers who reported experiencing troublesome feelings as a result of caregiving (eg, stress, sadness, or fear), 58% 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.

Navigation Tools Needed

Survey findings also suggest that many patient and caregiver respondents are overwhelmed by the volume of information available to them. About one-third (35%) of patients said there is too much information available about prostate cancer to understand it all, and 47% 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 Advanced Prostate Cancer Patient and Caregiver Burden of Illness Survey was commissioned by Astellas Pharma US, Inc, and Medivation, Inc, through Harris Interactive. The Association of Oncology Social Work, CancerCare, Prostate Health Education Network, and Us TOO Prostate Cancer Education and Support Network were sponsored to collaborate on the initiative.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.


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