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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\u2122) questionnaire is suitable for use in patients with SAPH.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Patients diagnosed with SAPH participated in qualitative one-on-one telephone interviews to better understand SAPH symptoms and their impacts on patients\u2019 lives and to determine the appropriateness of the PAH-SYMPACT\u2122 for use in patients with SAPH. The interviews comprised concept elicitation, completion of the PAH-SYMPACT\u2122, and cognitive debriefing. Interview transcripts were analyzed by content analysis.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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 \u201cmost bothersome or severe\u201d 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\u2122 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\u2122 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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>This study suggests the PAH-SYMPACT\u2122 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\u2019 symptom status.<\/jats:p>\n                <jats:p><jats:italic>Trial registration<\/jats:italic> Not applicable.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12890-021-01694-1","type":"journal-article","created":{"date-parts":[[2021,11,12]],"date-time":"2021-11-12T15:03:44Z","timestamp":1636729424000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Symptoms, impacts, and suitability of the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT\u2122) questionnaire in patients with sarcoidosis-associated pulmonary hypertension (SAPH): a qualitative interview study"],"prefix":"10.1186","volume":"21","author":[{"given":"Brooke M.","family":"Currie","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Evan W.","family":"Davies","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Am\u00e9lie","family":"Beaudet","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Larissa","family":"Stassek","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Leah","family":"Kleinman","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert P.","family":"Baughman","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2021,11,12]]},"reference":[{"issue":"6","key":"1694_CR1","doi-asserted-by":"publisher","first-page":"390","DOI":"10.1007\/s12471-016-0847-1","volume":"24","author":"MP Huitema","year":"2016","unstructured":"Huitema MP, Grutters JC, Rensing B, Reesink HJ, Post MC. 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The clinical sites were approved by Ethical and Independent Review Services (approval number 18186\u201301) and University of Cincinnati institutional review board (approval number 2019\u20130115). The study was conducted in accordance with the ethical standards of the Declaration of Helsinki (1964) and its subsequent amendments, and with International Council for Harmonisation Good Clinical Practices. All participants gave written informed consent to participate and permitted audio-recording of the interviews.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"B.M.C. is a former employee of Evidera, which was paid by Actelion Pharmaceuticals Ltd, a Janssen Pharmaceutical Company of Johnson & Johnson (the sponsor), to conduct the study. L.S. and L.K. are current employees of Evidera. E.W.D. is a former employee of Actelion Pharmaceuticals Ltd. A.B. is a current employee of Actelion Pharmaceuticals Ltd and holds shares in Johnson & Johnson. R.P.B. has been a consultant for and received research grants from Actelion Pharmaceuticals Ltd.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"365"}}