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Quality of Life Research

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Open Access 01-01-2021 | Hypoparathyroidism

Living with hypoparathyroidism: development of the Hypoparathyroidism Patient Experience Scale-Impact (HPES-Impact)

Authors: Meryl Brod, Laura Tesler Waldman, Alden Smith, David Karpf

Published in: Quality of Life Research | Issue 1/2021

Abstract

Purpose

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’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.

Methods

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.

Results

Analyses 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.

Conclusion

Findings provide substantial evidence of content validity for the validation-ready HPES-Impact in adults with HP.

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Title: Living with hypoparathyroidism: development of the Hypoparathyroidism Patient Experience Scale-Impact (HPES-Impact)
Authors: Meryl Brod
Laura Tesler Waldman
Alden Smith
David Karpf
Publication date: 01-01-2021
Publisher: Springer International Publishing
Keywords: Hypoparathyroidism
Hypothyroidism
Published in: Quality of Life Research / Issue 1/2021
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-020-02607-1

At a glance: The ONWARDS insulin icodec trials

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Living with hypoparathyroidism: development of the Hypoparathyroidism Patient Experience Scale-Impact (HPES-Impact)

Abstract

Purpose

Methods

Results

Conclusion

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Abstract

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