New tool measures pain severity specific to autosomal dominant polycystic kidney disease
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The first validated tool has been developed to assess pain and discomfort specific to autosomal dominant polycystic kidney disease, according to data presented in the Clinical Journal of the American Society of Nephrology.
Further, the Autosomal Dominant Polycystic Kidney Disease Pain and Discomfort Scale (ADPKD-PDS) measures pain severity and interference with activities during a 7-day recall period.
“The 2021 Polycystic Kidney Disease Regulatory Summit identified pain as a core outcome for ADPKD research. Yet unclear conceptualization of pain has so far led to its inconsistent measurement across studies,” Dorothee Oberdhan, lead author and director of patient-centric outcomes at Otsuka Pharmaceutical Companies, and colleagues wrote.
Researchers performed a literature review for disease-related pain symptoms, burden, impacts and patient-reported outcomes (PRO). Additionally, researchers sought insights from experts in the specialty. Data were derived from the review to create an initial assessment structure for pain and discomfort in ADPKD and to design a discussion guide for focus groups.
In the qualitative phase of the study, researchers organized 46 focus groups in 18 countries with 293 adults with ADPKD. Focus group analyses and follow-up conversations revealed three conceptually distinct types of ADPKD-related pain and discomfort (dull kidney pain, sharp kidney pain and fullness/discomfort). Based on expert opinion and data from the focus groups, researchers drafted an assessment model.
Then, in a cross-sectional survey, 298 adults with ADPKD completed the assessment. This consisted of a demographic questionnaire, a drafted 22-item ADPKD pain and discomfort scale, an 18-item ADPKD-impact scale, a seven-item brief pain inventory sheet and a 12-item short-form health survey. A follow-up survey was conducted 3 to 4 weeks afterward with 108 participants.
Researchers examined survey responses for item-level descriptive statistics, latent model fit statistics, item discrimination, item- and domain-level psychometric statistics, test-retest reliability, responsiveness to change and convergent validity. This process helped researchers refine the assessment until finalizing the 20-item ADPKD-Pain and Discomfort Scale (ADPKD-PDS).
“The rigorous development and testing of the ADPKD-PDS have resulted in a tool that meets or exceeds accepted standards for reliability and validity of PRO instruments. Moreover, the involvement of focus groups across a wide variety of geographical and cultural regions showed consistent findings, suggesting that the concepts assessed by the instrument are generalizable to the global ADPKD population,” Oberdhan and colleagues wrote. “Given the growing interest in patient-centered research, development of the ADPKD-PDS may lead to a better understanding of how to improve the symptomatic effect of pain in people living with ADPKD.”
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