Development of the Autosomal Dominant Polycystic Kidney Disease Impact Scale: A New Health-Related Quality-of-Life Instrument

The impact of autosomal dominant polycystic kidney disease (ADPKD) on health-related quality of life (HRQoL) is not well understood due to a lack of instruments specific to the condition. Content for a new self-administered patient-reported outcome (PRO) questionnaire to assess ADPKD-related HRQoL w...

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Veröffentlicht in:American journal of kidney diseases 2018-02, Vol.71 (2), p.225-235
Hauptverfasser: Oberdhan, Dorothee, Cole, Jason C., Krasa, Holly B., Cheng, Rebecca, Czerwiec, Frank S., Hays, Ron D., Chapman, Arlene B., Perrone, Ronald D.
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container_end_page 235
container_issue 2
container_start_page 225
container_title American journal of kidney diseases
container_volume 71
creator Oberdhan, Dorothee
Cole, Jason C.
Krasa, Holly B.
Cheng, Rebecca
Czerwiec, Frank S.
Hays, Ron D.
Chapman, Arlene B.
Perrone, Ronald D.
description The impact of autosomal dominant polycystic kidney disease (ADPKD) on health-related quality of life (HRQoL) is not well understood due to a lack of instruments specific to the condition. Content for a new self-administered patient-reported outcome (PRO) questionnaire to assess ADPKD-related HRQoL was developed through clinical expert and patient focus group discussions. The new PRO instrument was administered to study patients with ADPKD to evaluate its reliability and validity. 1,674 adult patients with ADPKD participated in this research: 285 patients in focus groups to generate questionnaire content, 15 patients in debriefing interviews to refine the PRO questionnaire, and 1,374 patients to assess the performance and measurement properties of the PRO questionnaire. A new PRO questionnaire. The ADPKD Impact Scale (ADPKD-IS), consisting of 14 items representing 3 conceptual domains (physical, emotional, and fatigue) plus 4 additional questions, was developed. The instrument’s reliability (regarding internal consistency and test-retest consistency) and validity (content and construct) were supported. Need for more responsiveness testing when more data from clinical use become available over time. Complex concepts such as ADPKD-related pain and impact on a patient's HRQoL need further evaluation. The ADPKD-IS is a new patient-centric tool that reliably and validly provides a standardized method for assessing HRQoL and overall disease burden in patients with ADPKD.
doi_str_mv 10.1053/j.ajkd.2017.08.020
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Content for a new self-administered patient-reported outcome (PRO) questionnaire to assess ADPKD-related HRQoL was developed through clinical expert and patient focus group discussions. The new PRO instrument was administered to study patients with ADPKD to evaluate its reliability and validity. 1,674 adult patients with ADPKD participated in this research: 285 patients in focus groups to generate questionnaire content, 15 patients in debriefing interviews to refine the PRO questionnaire, and 1,374 patients to assess the performance and measurement properties of the PRO questionnaire. A new PRO questionnaire. The ADPKD Impact Scale (ADPKD-IS), consisting of 14 items representing 3 conceptual domains (physical, emotional, and fatigue) plus 4 additional questions, was developed. The instrument’s reliability (regarding internal consistency and test-retest consistency) and validity (content and construct) were supported. Need for more responsiveness testing when more data from clinical use become available over time. Complex concepts such as ADPKD-related pain and impact on a patient's HRQoL need further evaluation. 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Need for more responsiveness testing when more data from clinical use become available over time. Complex concepts such as ADPKD-related pain and impact on a patient's HRQoL need further evaluation. 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subjects ADPKD
autosomal dominant
Cost of Illness
cystic
disease burden
Emotional Adjustment - physiology
Fatigue - psychology
Female
Focus Groups
Humans
kidney diseases
Male
Middle Aged
pain
Patient Reported Outcome Measures
patient-centered outcomes
patient-reported outcome (PRO)
Physical Functional Performance
Polycystic kidney
Polycystic Kidney, Autosomal Dominant - physiopathology
Polycystic Kidney, Autosomal Dominant - psychology
PRO instrument
Quality of Life
quality of life (QoL)
Reproducibility of Results
Surveys and Questionnaires - standards
title Development of the Autosomal Dominant Polycystic Kidney Disease Impact Scale: A New Health-Related Quality-of-Life Instrument
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