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Protocol for development, calibration and validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC).

ABSTRACT: INTRODUCTION:Assessing and measuring patients' chronic condition self-management needs are critical to quality health care and to related research. One in three adults around the world live with multiple chronic conditions. While many patient-reported measures of self-management have been developed, none has emerged as the gold standard, and all have one or more of the following limitations: (1) they fail to measure the different domains of self-management important to patients, (2) they lack sufficient specificity to support patient-centred care or identify the specific components of self-management interventions that work and/or (3) they lack suitability for patients with multiple chronic conditions. METHODS AND ANALYSIS:The Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC) is being developed to overcome these shortcomings. It will measure respondents' perceived success (or difficulty) in self-managing seven domains important to patients. The protocol has three phases. Phase 1 is conceptual model development and item generation. Phase 2 is assessment of the relevance and understanding of items by people with chronic conditions. Phase 3 is item analysis, dimensionality assessment, scaling and preliminary validation of the PRISM-CC using an online survey of people with chronic conditions (n~750). The expected completion date is early 2021. ETHICS AND DISSEMINATION:This study will adhere to the Canadian Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans. Ethics approval for all phases has been obtained from the Nova Scotia Health Authority Research Ethics Board. Once completed, the PRISM-CC will be made available for research and healthcare at minimal to no cost.

SUBMITTER: Packer T

PROVIDER: S-EPMC7528366 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Protocol for development, calibration and validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC).

Packer Tanya T Kephart George G Audulv Åsa Å Keddy America A Warner Grace G Peacock Kylie K Sampalli Tara T

BMJ open 20200930 9

<h4>Introduction</h4>Assessing and measuring patients' chronic condition self-management needs are critical to quality health care and to related research. One in three adults around the world live with multiple chronic conditions. While many patient-reported measures of self-management have been developed, none has emerged as the gold standard, and all have one or more of the following limitations: (1) they fail to measure the different domains of self-management important to patients, (2) they ...[more]

PMID: 32998919

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Project description:BackgroundThere is a need for a survey instrument to measure arthralgia (joint pain) that has been psychometrically validated in the context of existing reference instruments. We developed the 16-item Patient-Reported Arthralgia Inventory (PRAI) to measure arthralgia severity in 16 joints, in the context of a longitudinal cohort study to assess aromatase inhibitor-associated arthralgia in breast cancer survivors and arthralgia in postmenopausal women without breast cancer. We sought to evaluate the reliability and validity of the PRAI instrument in these populations, as well as to examine the relationship of patient-reported morning stiffness and arthralgia.MethodsWe administered the PRAI on paper in 294 women (94 initiating aromatase inhibitor therapy and 200 postmenopausal women without breast cancer) at weeks 0, 2, 4, 6, 8, 12, 16, and 52, as well as once in 36 women who had taken but were no longer taking aromatase inhibitor therapy.ResultsCronbach's alpha was 0.9 for internal consistency of the PRAI. Intraclass correlation coefficients of test-retest reliability were in the range of 0.87-0.96 over repeated PRAI administrations; arthralgia severity was higher in the non-cancer group at baseline than at subsequent assessments. Women with joint comorbidities tended to have higher PRAI scores than those without (estimated difference in mean scores: -0.3, 95% confidence interval [CI] -0.5, -0.2; P<0.001). The PRAI was highly correlated with the Functional Assessment of Cancer Therapy-Endocrine Subscale item "I have pain in my joints" (reference instrument; Spearman r range: 0.76-0.82). Greater arthralgia severity on the PRAI was also related to decreased physical function (r=-0.47, 95% CI -0.55, -0.37; P<0.001), higher pain interference (r=0.65, 95% CI 0.57-0.72; P<0.001), less active performance status (estimated difference in location (-0.6, 95% CI -0.9, -0.4; P<0.001), and increased morning stiffness duration (r=0.62, 95% CI 0.54-0.69; P<0.0001).ConclusionWe conclude that the psychometric properties of the PRAI are satisfactory for measuring arthralgia severity.

Dataset Information

Protocol for development, calibration and validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC).

Publications

Protocol for development, calibration and validation of the Patient-Reported Inventory of Self-Management of Chronic Conditions (PRISM-CC).

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