{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T10:45:34Z","timestamp":1788864334028,"version":"build-2803163510"},"reference-count":35,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2020,8,24]],"date-time":"2020-08-24T00:00:00Z","timestamp":1598227200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2020,8,24]],"date-time":"2020-08-24T00:00:00Z","timestamp":1598227200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"Ascendis Pharma"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2021,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>Hypoparathyroidism (HP) is a rare endocrine disorder characterized by absent or inappropriately low levels of circulating parathyroid hormone (PTH). Research indicates that HP patients on conventional therapy may have a reduced quality of life. The study\u2019s purpose was to develop a new disease-specific measure of the impacts of hypoparathyroidism on functioning and well-being and provide evidence for its content validity based on rigorous qualitative research methodologies for patient-reported outcomes development.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Semi-structured, individual concept elicitation (CE) interviews were conducted with 5 clinical experts and 42 adults in the USA with HP to identify impacts of relevance and importance to the target population. Transcripts were coded and analyzed using an adapted grounded theory approach common to qualitative research. Following item generation, the draft measure was cognitive debriefed in an independent sample of 16 adults with HP.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Analyses identified four impact domains: physical functioning, including ability to exercise (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200932, 76%) and mobility (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200921, 50%); daily life, including ability to do things around the home (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200933, 79%), and interference with work productivity (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200918, 43%); psychological well-being, including feeling anxious\/anxiety (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200934, 81%) and frustrated (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200927, 64%); and social, including ability to participate in social activities (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200933, 79%) and relationships (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200932, 76%). Twenty-seven impacts were identified and included in the preliminary measure. After the cognitive debriefing, a validation-ready, 26-item Hypoparathyroidism Patient Experience Scale-Impact (HPES-Impact) was generated.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Findings provide substantial evidence of content validity for the validation-ready HPES-Impact in adults with HP.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s11136-020-02607-1","type":"journal-article","created":{"date-parts":[[2020,8,24]],"date-time":"2020-08-24T01:02:52Z","timestamp":1598230972000},"page":"277-291","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":25,"title":["Living with hypoparathyroidism: development of the Hypoparathyroidism Patient Experience Scale-Impact (HPES-Impact)"],"prefix":"10.1007","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0663-5838","authenticated-orcid":false,"given":"Meryl","family":"Brod","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9968-7057","authenticated-orcid":false,"given":"Laura Tesler","family":"Waldman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1582-534X","authenticated-orcid":false,"given":"Alden","family":"Smith","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Karpf","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2020,8,24]]},"reference":[{"key":"2607_CR1","doi-asserted-by":"publisher","first-page":"17080","DOI":"10.1038\/nrdp.2017.80","volume":"3","author":"M Mannstadt","year":"2017","unstructured":"Mannstadt, M., Bilezikian, J. 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Brod and L.T. Waldman are consultants to the pharmaceutical industry, including Ascendis Pharma. A. Smith is an\u00a0employee\u00a0of Ascendis Pharma.\u00a0D. Karpf was an employee of Ascendis Pharma when the research was conducted.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflicts of Interest"}},{"value":"Ethics approval was received from Copernicus Group IRB (tracking #TBG1-18-290).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Informed consent was obtained from all respondents who participated in the study.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Informed consent"}}]}}