Rare Disease Caregiving Report Paints a Portrait of PH Caregivers in the U.S.

This article by Mike Knaapen, Director, Patient and Caregiver Programs and Lisa Weber, Vice President, Greenwald and Associates, first appeared in Issue 2 2018 of Pathlight magazine. Become a member of PHA to receive this quarterly publication full of patient profiles, medical information and tips for living with pulmonary hypertension.


It is well known that the largest group of caregivers in the United States are the adult children of aging parents, a.k.a. the “general caregivers.” However, that is not quite representative of the PH caregiving community. We know that there are other kinds of caregivers – husbands, wives, parent, etc. But, it’s not enough for us know: Policymakers, health care system administrators and others need to know, too.

That is why the National Alliance for Caregiving (NAC) and Global Genes, with help from the Pulmonary Hypertension Association (PHA), conducted a first-of-its-kind survey of rare disease caregivers in the United States. The goal was to get an accurate portrayal of the rare disease caregiver in order to help shape policies, laws and, ultimately, the health care system.

From the survey came a new report, Rare Disease Caregiving in America, published in February 2018, that provided insights into various characteristics of rare disease caregivers in the U.S. Thanks to PHA’s promotion of the survey and its role in identifying two researchers for their advisory panel, there were enough responses from the PH community to put together a PH-specific case study.

Nine Key Findings About PH Caregivers

  1. Age – PH caregivers tend to be older than other caregivers, with an average age of 54 versus the general caregiver age of 49.
  2. Relationships – Though 49% of caregivers in America are the adult children of aging parents, PH caregivers are more likely to be spouses (51%) or parents (33%).
  3. Ripple effect on the family – 75% of PH caregivers expressed a sense of loss for what their loved one’s life would have been like without PH, and fewer than half (47%) believe their role has had a positive effect on their family.
  4. Work – 63% of PH caregivers are employed, and nearly all of them have had to miss work to provide care (91%). 38% took a leave of absence and 34% cut back their hours.
  5. Expertise – 67% of PH caregivers help with medical or nursing tasks, and 76% reported that at some point they have had to educate health care professionals about PH.
  6. Time – PH caregivers spend an average of 28 hours each week caring for their loved one and do so for nearly 6.5 years, on average.
  7. Clinical Trials – For the 27% of PH caregivers who reported their loved ones were involved in a clinical trial, the caregiver played a major role in fulfilling needs associated with paperwork, transportation, learning about the trial and coordinating care.
  8. Money – 67% of PH caregivers worry about finances.
  9. Emotional Impact – PH caregivers report higher levels of emotional stress (49%) compared to general caregivers (33%).

2018-07-06T21:06:10+00:00 July 6th, 2018|