Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study

Abstract Background Sarcoidosis-associated pulmonary hypertension (SAPH) is a prevalent and serious complication of sarcoidosis. No SAPH-specific self-report instruments for assessing SAPH symptoms and their impact on patients are available to date. This study sought to determine whether the Pulmona...

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Main Authors: Brooke M. Currie, Evan W. Davies, Amélie Beaudet, Larissa Stassek, Leah Kleinman, Robert P. Baughman
Format: Article
Language:English
Published: BMC 2021-11-01
Series:BMC Pulmonary Medicine
Subjects:
Online Access:https://doi.org/10.1186/s12890-021-01694-1
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author Brooke M. Currie
Evan W. Davies
Amélie Beaudet
Larissa Stassek
Leah Kleinman
Robert P. Baughman
author_facet Brooke M. Currie
Evan W. Davies
Amélie Beaudet
Larissa Stassek
Leah Kleinman
Robert P. Baughman
author_sort Brooke M. Currie
collection DOAJ
description Abstract Background Sarcoidosis-associated pulmonary hypertension (SAPH) is a prevalent and serious complication of sarcoidosis. No SAPH-specific self-report instruments for assessing SAPH symptoms and their impact on patients are available to date. This study sought to determine whether the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire is suitable for use in patients with SAPH. Methods Patients diagnosed with SAPH participated in qualitative one-on-one telephone interviews to better understand SAPH symptoms and their impacts on patients’ lives and to determine the appropriateness of the PAH-SYMPACT™ for use in patients with SAPH. The interviews comprised concept elicitation, completion of the PAH-SYMPACT™, and cognitive debriefing. Interview transcripts were analyzed by content analysis. Results Eleven patients with SAPH were interviewed between August 2019 and June 2020. In the concept elicitation, all 11 participants endorsed shortness of breath and nine participants (82%) rated it as their “most bothersome or severe” symptom. Impacts endorsed by all 11 participants were difficulty walking uphill or up stairs and difficulty in performing daily activities. Cognitive debriefing indicated that the PAH-SYMPACT™ items were relevant and understandable to most participants and reflected their experiences of SAPH. Participants indicated that no key symptoms or impacts of SAPH were missing. They also reported that the PAH-SYMPACT™ instructions and response options were clear, and that it would be feasible to complete the 11 symptom items and one oxygen use item as part of their daily schedule. Conclusions This study suggests the PAH-SYMPACT™ is suitable for assessing symptoms and their impact in patients with SAPH. However, larger longitudinal studies are needed to confirm that it is fit for use in this patient population and that it can be used to reliably detect temporal changes in patients’ symptom status. Trial registration Not applicable.
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spelling doaj.art-b05789a527004990b985ff1c37b6a5162022-12-21T17:33:55ZengBMCBMC Pulmonary Medicine1471-24662021-11-0121111010.1186/s12890-021-01694-1Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview studyBrooke M. Currie0Evan W. Davies1Amélie Beaudet2Larissa Stassek3Leah Kleinman4Robert P. Baughman5Evidera Inc.Actelion Pharmaceuticals LtdActelion Pharmaceuticals LtdEvidera Inc.Evidera Inc.University of Cincinnati Medical CenterAbstract Background Sarcoidosis-associated pulmonary hypertension (SAPH) is a prevalent and serious complication of sarcoidosis. No SAPH-specific self-report instruments for assessing SAPH symptoms and their impact on patients are available to date. This study sought to determine whether the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire is suitable for use in patients with SAPH. Methods Patients diagnosed with SAPH participated in qualitative one-on-one telephone interviews to better understand SAPH symptoms and their impacts on patients’ lives and to determine the appropriateness of the PAH-SYMPACT™ for use in patients with SAPH. The interviews comprised concept elicitation, completion of the PAH-SYMPACT™, and cognitive debriefing. Interview transcripts were analyzed by content analysis. Results Eleven patients with SAPH were interviewed between August 2019 and June 2020. In the concept elicitation, all 11 participants endorsed shortness of breath and nine participants (82%) rated it as their “most bothersome or severe” symptom. Impacts endorsed by all 11 participants were difficulty walking uphill or up stairs and difficulty in performing daily activities. Cognitive debriefing indicated that the PAH-SYMPACT™ items were relevant and understandable to most participants and reflected their experiences of SAPH. Participants indicated that no key symptoms or impacts of SAPH were missing. They also reported that the PAH-SYMPACT™ instructions and response options were clear, and that it would be feasible to complete the 11 symptom items and one oxygen use item as part of their daily schedule. Conclusions This study suggests the PAH-SYMPACT™ is suitable for assessing symptoms and their impact in patients with SAPH. However, larger longitudinal studies are needed to confirm that it is fit for use in this patient population and that it can be used to reliably detect temporal changes in patients’ symptom status. Trial registration Not applicable.https://doi.org/10.1186/s12890-021-01694-1Health-related quality of lifePAH-SYMPACT™Patient-reported outcomeQualitative interviewsSarcoidosisSarcoidosis-associated pulmonary hypertension
spellingShingle Brooke M. Currie
Evan W. Davies
Amélie Beaudet
Larissa Stassek
Leah Kleinman
Robert P. Baughman
Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study
BMC Pulmonary Medicine
Health-related quality of life
PAH-SYMPACT™
Patient-reported outcome
Qualitative interviews
Sarcoidosis
Sarcoidosis-associated pulmonary hypertension
title Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study
title_full Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study
title_fullStr Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study
title_full_unstemmed Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study
title_short Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT™) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study
title_sort symptoms impacts and suitability of the pulmonary arterial hypertension symptoms and impact pah sympact™ questionnaire in patients with sarcoidosis associated pulmonary hypertension saph a qualitative interview study
topic Health-related quality of life
PAH-SYMPACT™
Patient-reported outcome
Qualitative interviews
Sarcoidosis
Sarcoidosis-associated pulmonary hypertension
url https://doi.org/10.1186/s12890-021-01694-1
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