The longitudinal use of EmPHasis-10 and CAMPHOR questionnaire health-related quality of life scores in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension

Hendriks, Paul M.; Thor, M.C.J. van; Wapenaar, Monique; Chandoesing, Prewesh P.; Toorn, Leon M. van den; Bosch, Annemien E. van den; Post, Marco C.; Boomars, Karin A.

doi:10.1016/j.rmed.2021.106525

Cited by 12 publications

(27 citation statements)

References 30 publications

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“…The median baseline EmPHasis‐10 score of 34 is considerably higher than the median EmPHasis‐10 scores reported for patients with PAH from a large UK multicentre study, which included patients from our center, and a large multicenter study from the United States (score range: 20–30), and for patients with CTEPH (score: 24). 30 , 33 , 34 This suggests that patients with SAPH have a worse quality of life than other forms of PH for which we have treatment interventions. EmPHasis‐10 scores have been found to correlate with WHO FC and survival in patients with PAH, with higher scores associated with worse WHO FC and a significant increase in mortality seen with scores >34.…”

Section: Discussionmentioning

confidence: 99%

“…The EmPHasis-10 is a quality-of-life score developed and validated specifically for the assessment of HRQoL in patients with PH (see Supporting Information). 29,30 Higher scores are indicative of worse HRQoL. 29 The following data were collected from HES: comorbidities identified in the 5 years before diagnosis, survival after diagnosis, and 1-and 3-year HCRU and costs after diagnosis.…”

Section: Discussionmentioning

confidence: 99%

“…The EmPHasis‐10 is a quality‐of‐life score developed and validated specifically for the assessment of HRQoL in patients with PH (see Supporting Information). 29 , 30 Higher scores are indicative of worse HRQoL. 29 …”

Section: Methodsmentioning

confidence: 99%

“…In line with the study objectives, the following outcomes were collected from the Sheffield EMR: patient demographics, clinical characteristics, survival after diagnosis, and changes in HRQoL based on EmPHasis‐10 score from diagnosis to 1 and 2 years after diagnosis. The EmPHasis‐10 is a quality‐of‐life score developed and validated specifically for the assessment of HRQoL in patients with PH (see Supporting Information) 29,30 . Higher scores are indicative of worse HRQoL 29 …”

Section: Methodsmentioning

confidence: 99%

“…The median (Q1, Q3) EmPHasis-10 score in 33 (53%) patients with available assessments at diagnosis was 34 (26,41). The median EmPHasis-10 score was 33 (30,36) for the 27 patients who completed the assessment 1 year after diagnosis and 31 (11,34) for the 18 patients who completed the assessment 2 years after diagnosis. The median (Q1, Q3) change in EmPHasis-10 score between diagnosis and 1 year after diagnosis for the 20 (32%) patients with available assessments at both time points was −2 (−6, 0).…”

Section: Hrqolmentioning

confidence: 99%

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Healthcare resource utilization and quality of life in patients with sarcoidosis‐associated pulmonary hypertension

et al. 2022

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A retrospective, observational cohort study was conducted to generate real‐world evidence in adult patients diagnosed with sarcoidosis‐associated pulmonary hypertension (SAPH) at a referral center in England between 2012 and 2019. Data from the referral center electronic medical record database were linked to the National Health Service Hospital Episode Statistics database to collect and analyze patient demographics, clinical characteristics, comorbidities, treatment patterns, health‐related quality of life (HRQoL; assessed using the EmPHasis‐10 questionnaire), healthcare resource utilization (HCRU), costs, and survival. Sixty‐two patients with SAPH were identified. At diagnosis, 84% were in WHO functional class III and presented with significant pulmonary hemodynamic impairment. Cardiovascular and respiratory comorbidities were commonly reported prediagnosis. Median EmPHasis‐10 score at diagnosis was 34, indicative of poor HRQoL. In the 1st year after diagnosis, median (Q1, Q3) per‐patient HCRU was 1 (0, 2) all‐cause inpatient hospitalizations; 3 (2, 4) same‐day hospitalizations; and 9 (6, 11) outpatient consultations. In 24 patients who were hospitalized longer than 1 day in the 1st year after diagnosis, the median duration of hospitalization was 4 days. With a median follow‐up of 1.8 years, the median overall survival was 2.9 years. In this cohort of patients with SAPH, poor HRQoL and high HCRU were observed following diagnosis. To our knowledge, this is the first study to report on HRQoL and HCRU in patients with SAPH. More research is needed on treatment options for this population with high unmet needs.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Hrqolmentioning

confidence: 99%

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Healthcare resource utilization and quality of life in patients with sarcoidosis‐associated pulmonary hypertension

et al. 2022

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Patient perspectives on pulmonary hypertension in the United States: Burdens, expectations, and goals

Braley,

Richardson,

Whitley

et al. 2023

Pulm. circ.

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Pulmonary hypertension (PH) is a life‐threatening, debilitating disease caused by increased blood pressure in the pulmonary arteries. As patients living in the United States, we have unique insights into the journey from diagnosis and treatment within the US healthcare system and the significant impact that PH has on our quality of life. While there have recently been advances in PH management, there are several areas of PH care which we feel should be reassessed and improved. Commonly, diagnosis is lengthy and convoluted due to the rarity of the disease and limited knowledge of PH in primary care. There are also barriers to obtaining the right treatment and we feel that a more holistic approach to care is needed. Mental health is commonly overlooked and should be an integral part of patient care, as should elements such as nutritional advice, cardiopulmonary rehabilitation, and sexual health. PH patient associations play a key role in providing social, educational, and financial support to patients and caregivers alongside PH research and advocacy. As patients, we feel that we need to advocate for correct diagnosis, timely referral, and optimal treatment, in addition to overcoming the financial and/or administrative hurdles to obtain these. We propose several future goals to help empower patients to play an active, central role in their care and to improve all aspects of PH management. We advocate for further use of the patient voice in research and clinical development programs, including the use of patient‐reported outcomes that have been developed with patient input.

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Safety and efficacy of balloon pulmonary angioplasty for technically operable chronic thromboembolic pulmonary hypertension

Wang,

Liu,

Tao

et al. 2023

Pulm. circ.

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Balloon pulmonary angioplasty (BPA) has been proven effective for addressing technically inoperable chronic thromboembolic pulmonary hypertension (CTEPH). However, the effectiveness of BPA in technically operable CTEPH patients who, for various reasons, did not undergo the procedure remains an area requiring exploration. This study sought to assess the safety and efficacy of BPA in such cases. We collected and reviewed data from CTEPH patients who underwent BPA in a consecutive manner. Following multidisciplinary team (MDT) decisions, patients were classified into two groups: technically inoperable (group A) and operable (group B). Group B comprised patients deemed technically suitable for pulmonary endarterectomy (PEA) but who did not undergo the procedure for various reasons. All patients underwent a comprehensive diagnostic work‐up, including right heart categorization at baseline and the last intervention. This study compared changes in hemodynamic parameters, functional capacity, and quality of life between the two groups. In total, 161 patients underwent 414 procedures at our center, with Group A comprising 112 patients who underwent 282 BPA sessions and group B comprising 49 patients who underwent 132 BPA sessions. Significantly, both groups exhibited improvements in hemodynamics, functional capacity, and quality of life. The occurrence rate of complications, including hemoptysis and lung injury, was similar [12 (63.2%) vs. 7 (36.8%), p = 0.68]. BPA demonstrated favorable outcomes in patients with proximal CTEPH who did not undergo pulmonary endarterectomy. However, the clinical impact of BPA in technically operable CTEPH was found to be less significant than in inoperable cases.

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The longitudinal use of EmPHasis-10 and CAMPHOR questionnaire health-related quality of life scores in patients with pulmonary arterial hypertension and chronic thromboembolic pulmonary hypertension

Cited by 12 publications

References 30 publications

Healthcare resource utilization and quality of life in patients with sarcoidosis‐associated pulmonary hypertension

Healthcare resource utilization and quality of life in patients with sarcoidosis‐associated pulmonary hypertension

Patient perspectives on pulmonary hypertension in the United States: Burdens, expectations, and goals

Safety and efficacy of balloon pulmonary angioplasty for technically operable chronic thromboembolic pulmonary hypertension

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