For caregivers of children with PH, the invisible burdens are steep, according to results from the Pulmonary Hypertension Global Patient Survey: Understanding the Invisible Burden of Pediatric Pulmonary Hypertension. The survey was published earlier this year in the journal Pulmonary Circulation.

Employment disruption, social isolation, challenges accessing PH specialists, and a lack of clinical trials centered around children’s unique needs add up to what the survey authors describe as creating a “burden that extends far beyond medical management.”

“It is one thing having to process all communication and information coming from the doctors, another thing to keep the mental state of the child on the positive side, and a totally different thing to consider how to plan the family’s future,” one caregiver noted. “Yet, all these are blended together in a way that sometimes seems so difficult to bare [sic].”

The survey, the first of its kind to look at pediatric PH patients internationally, included data from 136 caregivers of children with PH in 32 countries. It was published as part of the Pulmonary Vascular Research Institute’s Pulmonary Hypertension Global Patient Survey, which last year identified 10 calls to action for improving patient care.

Barriers to clinical trial access

While adult patients face some of the same issues as children, access to clinical trials stood out as a significant challenge for caregivers. Only one in five families (19%) participate in pulmonary hypertension research, and half of all families with PH children wouldn’t consider participating in future clinical trials, the survey noted.

Their reasons included safety concerns, a reluctance to change stable treatments and the complexities of managing comorbidities.

Specialty care creates financial stress

Another critical issue is access to specialty care. For 41% of caregivers, it took longer than six months to get a PH diagnosis for their children.

“Families might have to travel to see their specialist, and this can be difficult and expensive,” the survey authors state. “A third of families travel more than two hours to see their specialist, and more than a quarter of families don’t have any of their travel costs reimbursed.”

“Pediatric care must extend beyond medical management to address family needs including social-work assistance for benefits navigation, flexible care delivery models incorporating telemedicine, proactive communication about treatment tolerability and research protocols designed with families from inception,” the authors note.