Original clinical scienceSymptom burden, quality of life, and attitudes toward palliative care in patients with pulmonary arterial hypertension: Results from a cross-sectional patient survey
Section snippets
Methods
With permission from the Pulmonary Hypertension Association and the approval of the Mayo Clinic Institutional Review Board, we contacted members of 4 Pulmonary Hypertension Association-maintained listservs via e-mail. Patients, caregivers, and medical providers who subscribed to these listservs were invited to participate in an Internet-based survey. Separate surveys were created for each group; the analysis contained in this report focuses on the survey of patients with PAH. If patients were
Respondent characteristics
Of 774 patients and caregivers with active e-mail addresses registered with the Pulmonary Hypertension Association, 315 returned completed surveys (41% overall response). Of these 315 responders, 276 (88%) contained eligible unique patient-specific responses that could be analyzed. Those that were disqualified only completed caregiver information and did not complete patient-related outcomes. Of the responders, 92.7% were from 45 of 50 states in the United States, with the remaining 7.3%
Discussion
The findings of this study are concordant with previous studies11, 12, 13, 14, 15, 16 that demonstrated patients with PAH have a profound and multifactorial symptom burden that affects QOL and may persist even with optimal PAH therapy. Despite these facts, PC use is low in patients with PAH, and several misperceptions of PC exist.
The barriers to PC access may partly explain the low use of PC in PAH despite the potential for benefits. PC is a field that continues to evolve and define itself, and
Disclosure statement
This study was funded with internal, institutional funding from the Mayo Clinic, Department of Medicine.
The initial abstract and poster were presented at Pulmonary Hypertension Association's Ninth International Pulmonary Hypertension Conference and Scientific Sessions, Garden Grove, California, June 24–27, 2010, and in an oral presentation at International Society of Heart and Lung Transplantation, Prague, Czech Republic, April 18, 2012.
R.P.F. and M.D.M. have done consulting work for the
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Palliative care referrals in patients with pulmonary arterial hypertension: The Pulmonary Hypertension Association Registry
2023, Respiratory MedicineCitation Excerpt :In the only comprehensive review of palliative care and PAH-related hospital admissions across the United States to date, 2.2% of 30,495 admissions from 2001 to 2017 involved inpatient palliative care consultation, although the rate did increase over time [18]. Furthermore, in two patient and physician surveys on palliative care in PAH, while 72% of physicians responded that they had referred to palliative care at least once in the past, only 8% of patients had considered palliative care [19,20]. To our knowledge, no study has examined the rate of outpatient palliative care consultation in PAH.
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2020, Respiratory MedicineCitation Excerpt :On the individual level, the Task Force experts promote emphasis on narrative medicine where patients are able to share their concerns and struggles and healthcare providers can be aware and involved in the full perspective of the patients so they can provide the best holistic management. One area of significant potential improvement is access to palliative care as surveys consistently show low rates of awareness and access to palliative care in patients who have low HRQoL and significant disease burden [49]. On a patient population level, there is great importance to support groups, patient associations, and structured resources for patient education and public awareness [14].