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. Dyspnea and edema are well recognized symptoms of PH, however, patients (pts) may also experience pain, fatigue, emotional distress and/or other symptoms which can have significant impact on their quality of life (QOL). In this study, we evaluated physician perception of pt symptom burden and physician attitudes towards palliative care, in order to identify opportunities to incorporate palliative care interventions to assist with management of QOL-related issues in PH pts.
METHODS: Internet-based survey was e-mailed to members of five 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 clinicians caring for PH pts. The provider survey included assessment of PH treatment/management strategies, palliative care utilization patterns, and self-reported comfort with managing pain and QOL in PH pts. Surveys were electronically administered in an anonymous fashion by a third party, with investigators being blinded to identity of respondents.
RESULTS: Of 355 clinicians and researchers with active e-mail addresses on record with the PHA, 79 returned surveys (22% overall response). Of these, 76 (96%) were eligible providers involved in clinical care of PH pts. Mean age of physicians was 47.5 ± 9.2 years. Responding physicians were mainly pulmonologists (67%), practicing in university/academic medical centers (89%), had been in practice a mean 12.2 ± 7.43 years, and cared for a median of 100 PH pts/year. Most PH physicians reported a high level of confidence in managing PH (87%), advanced PH-specific pharmacologic interventions (95%), and end-of-life care (88%). Smaller proportions were comfortable managing pain (62%) and QOL (78%) issues. PH physicians were less comfortable (72%) with supportive measures for pain such as opioids, antidepressants or neuromodulatory agents for neuropathic pain. A majority of PH physicians reported utilizing palliative care consultation at least once in the past 12 months (91%), primarily in the setting of end-of-life/active dying (59%), hospice referral (46%), or dyspnea/ impaired QOL (40%). The most frequently cited reasons for not referring pts to palliative care included: pt/family were not agreeable (51%) and a view that palliative care is “giving up hope” (43%). Physician misperceptions regarding palliative care included: pts are ineligible if on active PH treatment (28%), pts cannot have PH fully treated if palliative care involved (20%), and pts were not at “end-of-life” (11%). Physician also noted concerns about financial coverage/reimbursement issues, as well as a lack of palliative care services regionally. In response to a clinical vignette describing a pt with advanced PH (expected survival of “months”) that asked providers to indicate all appropriate treatment options, only 40% considered palliative care an option, with larger numbers including clinical trials (51%) or atrial septostomy (49%) as options. Only 12% of physicians included referral to hospice as an option.
CONCLUSIONS: Experienced PH providers feel more comfortable managing PH-specific pharmacologic interventions than QOL issues in PH pts. Enhanced integration of palliative care may improve pt QOL and assist PH providers in symptom management. Reimbursement and availability of palliative care and hospice for PH pts warrants further investigation.