A new study presented at the American Thoracic Society 2025 Conference reveals that women with pulmonary arterial hypertension (PAH) rely heavily on family caregivers but face significant gaps in meeting their support needs.
Methodology
Researchers conducted a 45-minute web-based quantitative survey across multiple countries, targeting women aged 21-50 with pulmonary arterial hypertension. Patient-reported outcome measures were obtained via quantitative data, and additional questions were customized to best address disease burden.To qualify, participants needed a self-reported WHO Group 1 pulmonary arterial hypertension diagnosis confirmed by a medical professional, a visit to a pulmonary arterial hypertension specialist within the past year, and current pulmonary arterial hypertension treatment. Women with comorbidities were excluded. The survey collected patient-reported outcome measures and included customized questions to assess disease burden and caregiver support patterns.
Key Findings
Who Provides Care: The majority of caregivers are spouses (64%) and parents (45%), followed by relatives, friends, children, and professional caregivers. Only 1% of women reported having no support.
Types of Support: Spouses primarily provide emotional encouragement (56%) and financial assistance (55%), while also helping with household duties and checking on emotional well-being. Parents and relatives mainly “check in” on patients and provide moral support.
Mismatched Needs: Despite receiving support, there’s a significant disconnect between what caregivers provide versus what women actually need. For example, while parents offer emotional support, women most urgently need help with household duties (88% in the US), caring for their own parents and children (82%), and financial assistance (72%).
Disease Impact: Women with more severe pulmonary arterial hypertension (functional classes 3-4) required more support overall than those with milder disease, though the total number of caregivers didn’t necessarily correlate with disease severity.
Conclusion: While women with pulmonary arterial hypertension activate extensive caregiver networks, there are substantial unmet needs, particularly for practical daily assistance. The research highlights the need for better coordination between informal family caregivers and formal support programs to address these gaps and improve patient outcomes
Read more at this link on the American Journal of Managed Care