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Symptom Burden, Quality of Life and Attitudes Toward Palliative Care in Patients with Pulmonary Hypertension

Keith Swetz


T. Shanafelt

J. Sloan

P. Novotny

Louise Durst


Robert Frantz


Michael McGoon


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Conference: 2010 International PHA Conference and Scientific Sessions

Release Date: 06.24.2010

Presentation Type: Abstracts

Swetz K, Shanafelt T, Sloan J, Novotny P, Durst L, Frantz R, McGoon M.
Mayo Clinic, Rochester, MN, USA

BACKGROUND:  Pulmonary hypertension (PH) is a complex disease with variable clinical manifestations.  Although dyspnea and edema are well recognized side effects of PH, patients (pts) may also experience pain, fatigue, emotional distress and other symptoms which can have significant impact on their quality of life (QOL).   However, little is known about the QOL of pts with PH and the incorporation of palliative care (PC) in their management plan.  In this study, we evaluated symptom burden, QOL and attitudes regarding PC in a large, international sample of PH pts to identify opportunities to improve QOL in PH pts.

METHODSInternet-based survey was e-mailed to members of four Pulmonary Hypertension Association (PHA) listservs which included rosters of pts, caregivers, and medical providers.  Separate surveys were created for each group; this analysis focused on the survey of PH pts. Symptom burden and QOL were assessed using the Linear Analog Self Assessment (LASA) QOL items and the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) which are standardized QOL assessment tools. Surveys were electronically administered in an anonymous fashion by a third party, with investigators being blinded to identity of respondents.

RESULTSOf 774 pts/caregivers with active e-mail addresses on record with the PHA, 315 returned surveys (41% overall response). Of these, 276 (88%) contained eligible unique pt responses. PH pts from 45/50 US states, 13 countries and 5 continents were represented. Mean age of responders was 48.9 ± 16.0 years; mean age at PH diagnosis was 44.1 ± 17.1 years. Responders were predominantly white (85%), female (86%), and with primary PH (42%).  

40% of pts had LASA overall QOL scores of ≤5 (considered profound, clinically significant reduction). Substantial proportions of pts also reported LASA scores ≤5 in fatigue (57%), physical well being (56%), social activity (49%), and emotional well being (49%) dimensions. High pain scores were reported by 38% of pts. Mean CAMPHOR energy, breathlessness, mood, and symptom scores clustered around the 50th percentile, with better functioning (mean 10.9/30) and QOL (mean 11.1/25) scores.

Although most pts believed their PH physician had excellent understanding of their PH progression/plan of care (92%), smaller proportions were satisfied with their physician's care of their QOL (77%). Despite prevalent symptoms, only 8% of pts considered PC, and few had PC (1%) or pain specialist (4%) involved in their care. The most frequently cited reasons for lack of PC included pt perception they were doing well or not very sick (63%) and not having PC brought up by their provider (22%). Misperceptions about PC were also common including:  a belief that PC is the same thing as hospice (24%), unawareness of what PC is (24%), a belief that initiating PC meant medications for treating PH would be stopped (17%), and the impression that starting PC was the equivalent of "giving up" or "dying"(10%). Only 30% of pts had discussed advanced care planning with physicians, and only 1/3 had advanced directives. 

CONCLUSIONS: PH can be associated with a profound symptom burden that affects QOL and may persist even with optimal PH therapy. Despite these facts, utilization of PC is low in PH pts and misperceptions of PC common. Better integration of PC in to the management of PH pts may improve patient QOL.