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Although hypohidrosis can be life-threatening, research on the impact of HED on the patient\u2019s quality of life has been very limited so far. Aiming at the development of a condition-specific patient-reported outcome measure (PROM) assessing health-related quality of life (HRQoL), we studied the HRQoL of children and adolescents with HED.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Focus (group) interviews were conducted with patients at the age of 8 to 17 years and parents of patients aged 2\u201317 years, all recruited from the HED patient registry of the University Hospital Erlangen, Germany. A qualitative interview analysis was performed, identifying key themes and generating a category system based on relevant interview excerpts. Using the Card-sorting method, an item list for the pilot version of the questionnaire was made.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Eleven focus (group) interviews with 9 children\/adolescents and 22 parents provided information on 24 patients. The analysis identified 562 statements about HRQoL, which were categorized into six main domains: physical well-being, emotional well-being, social well-being, autonomy, childcare\/school\/education, and parental well-being. On the basis of these statements, age-adjusted pilot versions of a questionnaire were developed, consisting of 83 items each: (1) an observer report for parents of children aged 2\u20137 years, (2) a self-report combined with an observer report for children and adolescents aged 8\u201317 years.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>This study is the first to explore HRQoL of children and adolescents with HED through qualitative interviews. Our findings highlight the impact of heat intolerance on daily life, the emotional burden of physical limitations, and the crucial role of coping strategies, social inclusion, and supportive relationships. The final validation of the new PROM, which shall enable the systematic integration of patient perspectives into clinical practice and research, is underway.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s13023-026-04246-0","type":"journal-article","created":{"date-parts":[[2026,2,6]],"date-time":"2026-02-06T18:54:28Z","timestamp":1770404068000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Health-related quality of life of children and adolescents with the most common ectodermal dysplasia: focus group study and item development for a condition-specific patient-reported outcome measure"],"prefix":"10.1186","volume":"21","author":[{"given":"Cosima","family":"K\u00fcgler","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stefanie","family":"Witt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johanna","family":"Hammersen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia","family":"Quitmann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8548-4053","authenticated-orcid":false,"given":"Holm","family":"Schneider","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,2,6]]},"reference":[{"issue":"12","key":"4246_CR1","doi-asserted-by":"publisher","first-page":"2327","DOI":"10.3390\/genes13122327","volume":"13","author":"N Peschel","year":"2022","unstructured":"Peschel N, Wright JT, Koster MI, et al. 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All individuals and\/or their legal guardians provided written informed consent to participate.","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":"Holm Schneider received both public and private funding for the current EDELIFE trial and holds a patent related to the prenatal therapy of XLHED, but signed a Remuneration Waiver Agreement to relinquish any personal financial gain from this invention; he has had a consulting or advisory role, received honoraria, research grants, and\/or travel support from Edimer Pharmaceuticals, Krystal Biotech, Novartis, Pierre Fabre, Roche, SRE GmbH, and Wyeth Pharma GmbH.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"94"}}