Symptom burden, quality of life, and attitudes toward palliative care in patients with pulmonary arterial hypertension: Results from a cross-sectional patient survey

Swetz, Keith M.; Shanafelt, Tait D.; Drozdowicz, Linda B.; Sloan, Jeff A.; Novotny, Paul J.; Durst, Louise A.; Frantz, Robert P.; McGoon, Michael D.

doi:10.1016/j.healun.2012.08.010

Cited by 68 publications

(76 citation statements)

References 33 publications

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“…Patient choice to attempt acute salvage therapy is common, but often accompanied by choice not to implement intense chronic maintenance disease-targeting therapy (such as intravenous [IV] prostaglandin therapy). 3,4,6 PRIORITIES FOR PALLIATIVE CARE IN PAH These findings exemplified by our patient case, as well as by existing literature, underscore the need for comprehensive, structured, systematic, and longitudinal delivery of palliative care, over the entire course of PAH. 7 Our patient vignette highlights marked unmet symptom recognition, definition, attention, and care over her life experience with PAH, in many ways threatening her outcomes until identified and mitigated.…”

Section: Emerging Data Relevant To Organization and Delivery Of Pallisupporting

confidence: 59%

“…[1][2][3] This is compounded by imperfect predictability of clinical trajectory, pointing to need for access to primary and specialty palliative care along the entirety of illness. Early diagnostic uncertainty exists for patient, family, and primary clinician, and typically sets a stage for future encounters and care.…”

Section: Emerging Data Relevant To Organization and Delivery Of Pallimentioning

confidence: 99%

“…(Of import, symptom presence and effects are typically under-recognized, under-discussed, and under-treated by patients and PAH specialty clinicians. 2,3,6 ) As illness progresses, patients' goals of care are often not iteratively reviewed, and nature and timing of end of life are frequently misperceived and left undiscussed. Patient-family-clinician mismatch in expectations and understanding of goals of care at end of life for PAH patients can lead to high resource utilization with frequent death in hospital and in the intensive care unit (ICU).…”

Section: Emerging Data Relevant To Organization and Delivery Of Pallimentioning

confidence: 99%

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Organization and Delivery of Palliative Care for Pulmonary Arterial Hypertension: Case-based Discussion

Landzberg

Schaefer

2018

Advances in Pulmonary Hypertension

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Our patient, as seen through the eyes of a palliative medicine team This 43-year-old woman presents a history that serves as a valuable foundation for discussion of need for a structured platform for delivery of palliative care for persons with pulmonary arterial hypertension and associated right heart failure; as such, her case vignette is succinctly reviewed, with emphasis placed on features relevant to this topic.

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Section: Emerging Data Relevant To Organization and Delivery Of Pallisupporting

confidence: 59%

Section: Emerging Data Relevant To Organization and Delivery Of Pallimentioning

confidence: 99%

Section: Emerging Data Relevant To Organization and Delivery Of Pallimentioning

confidence: 99%

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Organization and Delivery of Palliative Care for Pulmonary Arterial Hypertension: Case-based Discussion

Landzberg

Schaefer

2018

Advances in Pulmonary Hypertension

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“…To this end, the most interesting outcome of this study was the extent to which patients adapted their lives to PH, altering their personality and shaping new hobbies around their activity limitations. US and European surveys have also demonstrated the profound detrimental impact of PAH on QoL, including social life, physical and emotional well-being, sexual relationships and ability to work 13 17. Moreover, the US survey showed that only three-quarters were satisfied with their care from a QoL point of view 17.…”

Section: Discussionmentioning

confidence: 99%

Living with pulmonary hypertension: unique insights from an international ethnographic study

et al. 2014

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ObjectivesTo better understand the patient's perspective of pulmonary hypertension (PH), including the impact of living with PH, disease management and treatment.DesignThis qualitative ethnographic study collected observational video footage, supplemented by field notes and patient diaries to assess the impact of PH on the patient's life.SettingPatients were observed and filmed in their home for up to 6 h, capturing the environment, interactions and activities of everyday life.ParticipantsPatients with pulmonary arterial hypertension (PAH) or chronic thromboembolic PH who were receiving PAH-specific medication were recruited through healthcare professionals (HCPs) and patient associations in seven countries across four continents. Sampling was purposive and subgroup analysis was not intended.ResultsOverall, 39 patients with PH were enrolled. Many patients had a poor understanding of PH and found their ‘invisible’ disease difficult to explain to others. An important finding was the secrecy surrounding PH. Feelings of insecurity and isolation were regularly reported, and many patients admitted to hiding their symptoms. The marked improvement in symptoms after therapy initiation made assessment of disease progression more difficult as patients compared their quality of life (QoL) against pretreatment levels. Extensive planning and adherence to daily routines were required in patients’ everyday life.ConclusionsEthnography was used for the first time, in several countries, to evaluate the patient's perception of living with PH. This approach revealed key findings that would not typically be uncovered using other qualitative techniques, including the secrecy surrounding PH, the difficulties in describing the disease and the challenges in assessing disease progression. A more tailored dissemination of information from HCPs and development of a simple and understandable PH definition may be beneficial in alleviating the secrecy reported by patients. A greater appreciation of how patients perceive their disease and QoL has the potential to improve PH management.

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“…Similarly, awareness of and referrals to palliative care are rare. 23 Thus, current practice patterns may fail to address the most important symptoms or relieve disease burden for patients with PAH.…”

Section: Patient-related Outcomesmentioning

confidence: 99%

A Rare Opportunity in a Rare Disease

Mathai¹

2018

Advances in Pulmonary Hypertension

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Pulmonary hypertension (PH) is a chronic disease of the pulmonary vasculature, characterized by vessel remodeling that leads to increased pulmonary vascular resistance, right ventricular failure, and ultimately, death. While PH is somewhat simply defined as a mean pulmonary artery pressure (mPAP) on right heart catheterization (RHC) of greater than or equal to 25 mm Hg, the clinical, pathobiologic, and physiologic manifestations of the disease, and its subsequent impact on an individual patient, vary greatly. For example, while PH is defined by an elevated mPAP, current guidelines classify PH into 5 major categories, each with numerous subcategories based on clinical and physiologic features.1 Accordingly, proper classification of an individual patient requires an extensive evaluation that includes pulmonary function testing, submaximal exercise testing, several imaging studies, overnight oximetry, echocardiography, and ultimately, RHC. PH, regardless of etiology, imparts significant burden on patients, causing severe functional limitations and negatively impacting survival. Historically, in the era prior to the availability of specific pulmonary vasodilator therapies to treat patients with the rarest form of PH, pulmonary arterial hypertension, median survival was around 2 years.2 With the advent of targeted medical therapies over the past 30 years, the median survival has improved to more than 7 years.3 However, with these advances in therapies and the expanding availability of lung transplantation for most forms of PH, the complexity of care for patients with this disease has increased exponentially.

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Symptom burden, quality of life, and attitudes toward palliative care in patients with pulmonary arterial hypertension: Results from a cross-sectional patient survey

Cited by 68 publications

References 33 publications

Organization and Delivery of Palliative Care for Pulmonary Arterial Hypertension: Case-based Discussion

Organization and Delivery of Palliative Care for Pulmonary Arterial Hypertension: Case-based Discussion

Living with pulmonary hypertension: unique insights from an international ethnographic study

A Rare Opportunity in a Rare Disease

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