ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2021
Living with hypoparathyroidism: development of the Hypoparathyroidism Patient Experience Scale-Impact (HPES-Impact).
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
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Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it, 21 citations in OpenAlex.
- Diagnosis and management of hypoparathyroidism: recommendations of the working group of the Bone Section of the Hellenic Endocrine Society.Hormones (Athens, Greece) · 2025Guideline
- Patient-reported outcomes in palopegteriparatide-treated adults with hypoparathyroidism: PaTH Forward trial extension.The Journal of clinical endocrinology and metabolism · 2026Trial
- Palopegteriparatide in Japanese adults with hypoparathyroidism: 52-week results from the phase 3 PaTHway Japan trial.Endocrine journal · 2026Trial
- Management of patients with hypoparathyroidism: a Delphi consensus analysis.Journal of endocrinological investigation · 2026Article
- Unveiling the complexities of hypoparathyroidism: a comprehensive review of clinical manifestations, diagnosis, and novel therapies.Journal of endocrinological investigation · 2026Review
- Consensus-Based Recommendations for the Diagnosis, Treatment, and Monitoring of Hypoparathyroidism: Insights from the DACH Region.Calcified tissue international · 2025Article
- Understanding data visualization techniques in qualitative studies used to develop and validate patient-reported outcome measures: a targeted literature review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Review
- Adaptation and validation of the French version of the Hypoparathyroid Patient Questionnaire 28 (HPQ28) in the ComPaRe-Epi-Hypo e-cohort.JBMR plus · 2025Article
- Psychometric Evaluation of the Hypoparathyroidism Symptom Diary: Data from a Prospective Phase 3b/4 Study.Patient related outcome measures · 2025Article
- Performance in Behavioral Testing in an Animal Model of Post-Surgical Hypoparathyroidism.Journal of personalized medicine · 2024Article
- Incident comorbidities in patients with chronic hypoparathyroidism after thyroidectomy: a multicenter nationwide study.Frontiers in endocrinology · 2024Article
- Content validation of the SF-36v2® Health Survey Acute for use in hypoparathyroidism.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Article
- Psychometric Analysis of the Patient-Reported Hypoparathyroidism Symptom Diary Symptom Subscale Using Data from Two Clinical Trials.Patient related outcome measures · 2023Article
- Skeletal and nonskeletal consequences of hypoparathyroidism.Archives of endocrinology and metabolism · 2022Review
- Which physical activity in patients affected by hypoparathyroidism? A review of the literature and practical recommendations.Journal of endocrinological investigation · 2022Review
- Psychometric validation of the Hypoparathyroidism Patient Experience Scales (HPES).Journal of patient-reported outcomes · 2021Article
Corrections and comments
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Authors and funding
4 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeHypoparathyroidism (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's 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.
methodsSemi-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.
resultsAnalyses identified four impact domains: physical functioning, including ability to exercise (n = 32, 76%) and mobility (n = 21, 50%); daily life, including ability to do things around the home (n = 33, 79%), and interference with work productivity (n = 18, 43%); psychological well-being, including feeling anxious/anxiety (n = 34, 81%) and frustrated (n = 27, 64%); and social, including ability to participate in social activities (n = 33, 79%) and relationships (n = 32, 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.
conclusionFindings provide substantial evidence of content validity for the validation-ready HPES-Impact in adults with HP.
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Registered trials
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