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...

Descripción completa

Guardado en:

Detalles Bibliográficos
Autores principales:	Brooke M. Currie, Evan W. Davies, Amélie Beaudet, Larissa Stassek, Leah Kleinman, Robert P. Baughman
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	Health-related quality of life PAH-SYMPACT™ Patient-reported outcome Qualitative interviews Sarcoidosis Sarcoidosis-associated pulmonary hypertension Diseases of the respiratory system RC705-779
Acceso en línea:	https://doaj.org/article/b05789a527004990b985ff1c37b6a516
Etiquetas:	Agregar Etiqueta Sin Etiquetas, Sea el primero en etiquetar este registro!

id	oai:doaj.org-article:b05789a527004990b985ff1c37b6a516
record_format	dspace
spelling	oai:doaj.org-article:b05789a527004990b985ff1c37b6a5162021-11-14T12:37:25ZSymptoms, 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 study10.1186/s12890-021-01694-11471-2466https://doaj.org/article/b05789a527004990b985ff1c37b6a5162021-11-01T00:00:00Zhttps://doi.org/10.1186/s12890-021-01694-1https://doaj.org/toc/1471-2466Abstract 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.Brooke M. CurrieEvan W. DaviesAmélie BeaudetLarissa StassekLeah KleinmanRobert P. BaughmanBMCarticleHealth-related quality of lifePAH-SYMPACT™Patient-reported outcomeQualitative interviewsSarcoidosisSarcoidosis-associated pulmonary hypertensionDiseases of the respiratory systemRC705-779ENBMC Pulmonary Medicine, Vol 21, Iss 1, Pp 1-10 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	Health-related quality of life PAH-SYMPACT™ Patient-reported outcome Qualitative interviews Sarcoidosis Sarcoidosis-associated pulmonary hypertension Diseases of the respiratory system RC705-779
spellingShingle	Health-related quality of life PAH-SYMPACT™ Patient-reported outcome Qualitative interviews Sarcoidosis Sarcoidosis-associated pulmonary hypertension Diseases of the respiratory system RC705-779 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
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.
format	article
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
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_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_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_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
publisher	BMC
publishDate	2021
url	https://doaj.org/article/b05789a527004990b985ff1c37b6a516
work_keys_str_mv	AT brookemcurrie symptomsimpactsandsuitabilityofthepulmonaryarterialhypertensionsymptomsandimpactpahsympactquestionnaireinpatientswithsarcoidosisassociatedpulmonaryhypertensionsaphaqualitativeinterviewstudy AT evanwdavies symptomsimpactsandsuitabilityofthepulmonaryarterialhypertensionsymptomsandimpactpahsympactquestionnaireinpatientswithsarcoidosisassociatedpulmonaryhypertensionsaphaqualitativeinterviewstudy AT ameliebeaudet symptomsimpactsandsuitabilityofthepulmonaryarterialhypertensionsymptomsandimpactpahsympactquestionnaireinpatientswithsarcoidosisassociatedpulmonaryhypertensionsaphaqualitativeinterviewstudy AT larissastassek symptomsimpactsandsuitabilityofthepulmonaryarterialhypertensionsymptomsandimpactpahsympactquestionnaireinpatientswithsarcoidosisassociatedpulmonaryhypertensionsaphaqualitativeinterviewstudy AT leahkleinman symptomsimpactsandsuitabilityofthepulmonaryarterialhypertensionsymptomsandimpactpahsympactquestionnaireinpatientswithsarcoidosisassociatedpulmonaryhypertensionsaphaqualitativeinterviewstudy AT robertpbaughman symptomsimpactsandsuitabilityofthepulmonaryarterialhypertensionsymptomsandimpactpahsympactquestionnaireinpatientswithsarcoidosisassociatedpulmonaryhypertensionsaphaqualitativeinterviewstudy
_version_	1718429124393959424

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

Ejemplares similares