Patient-Reported Outcome Measures (PROMs) are completed by only 20.6% of pulmonary hypertension patients despite 87.7% awareness, failing to capture pregnancy worry in 53.6% of young women.
This editorial emphasizes the urgent need to integrate and operationalize female-specific and digital Patient-Reported Outcome Measures (PROMs) to address the unmeasured psychosocial and physical burdens of pulmonary hypertension.
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In their recent paper, The Pulmonary Hypertension Global Patient Survey: Physical and Psychosocial Impacts on Health-Related Quality of Life, Bunclark et al. 1 present a monumental and much-needed international description of the symptomatic burden of pulmonary hypertension (PH). By analyzing over 3300 responses across 88 countries, the authors effectively illuminate the “invisible” nature of PH, exposing a profound psychosocial toll where over a third of patients feel isolated, misunderstood, or angry. This study decisively shifts the focus from purely hemodynamic survival toward the equally vital metric of lived human experience 2, 3. One of the most striking findings of the survey is the stark discrepancy in the utilization of Patient-Reported Outcome Measures (PROMs). While an encouraging 87.7% of responders were aware of PROMs, a mere 20.6% had ever completed one in clinical practice, with uptake plummeting to 6.0% in African nations. Furthermore, the authors highlight that young women bear a disproportionate share of the disease's physical and psychological burden. Over half (53.6%) of women of child-bearing age worry about pregnancy, often exacerbated by inconsistent medical advice and lack of access to appropriate contraception or family planning resources. This presents a critical entry point for the next phase of PH clinical care. As Bunclark et al. astutely note, patients explicitly reported that current PROMs fail to capture vital aspects of women's health, including menstruation, menopause, and the profound emotional distress surrounding family planning. If PROMs do not ask the right questions, clinicians remain blind to the answers. A logical next step to operationalize the authors' findings—and their subsequent “Call to Action” advocating for PROMs to guide holistic care 4—is a two-pronged approach. First, the PH community must prioritize the development and validation of female-specific modules within existing PROM frameworks (such as the CAMPHOR or PAH-SYMPACT) to systematically quantify the burden of contraception, pregnancy anxiety, and hormonal changes. Second, to bridge the glaring global gap in PROM uptake, we must advocate for the transition from paper-based surveys to integrated electronic PROMs (ePROMs) delivered via mobile platforms. Digital integration could bypass infrastructural barriers in the Global South and facilitate the routine tracking of the “invisible” symptoms that patients so desperately want their clinicians to understand. Bunclark et al. have provided an invaluable map of the global PH patient experience. Future initiatives must now build upon this foundation by refining our tools to capture the unique struggles of female patients and ensuring these measures are accessible in every clinic worldwide. Hu ningyou wrote, reviewed and takes final responsibility for the content of the manuscript. The author has nothing to report. The author has nothing to report. The author has nothing to report. The authors declare no conflicts of interest.
Hu Ningyou (Wed,) reported a other. Patient-Reported Outcome Measures (PROMs) are completed by only 20.6% of pulmonary hypertension patients despite 87.7% awareness, failing to capture pregnancy worry in 53.6% of young women.