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      Codesigning a Measure of Person-Centred Coordinated Care to Capture the Experience of the Patient : The Development of the P3CEQ

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          Abstract

          Background:

          Person-centred coordinated care (P3C) is a priority for stakeholders (ie, patients, carers, professionals, policy makers). As a part of the development of an evaluation framework for P3C, we set out to identify patient-reported experience measures (PREMs) suitable for routine measurement and feedback during the development of services.

          Methods:

          A rapid review of the literature was undertaken to identity existing PREMs suitable for the probing person-centred and/or coordinated care. Of 74 measures identified, 7 met our inclusion criteria. We critically examined these against core domains and subdomains of P3C. Measures were then presented to stakeholders in codesign workshops to explore acceptability, utility, and their strengths/weaknesses.

          Results:

          The Long-Term Condition 6 questionnaire was preferred for its short length, utility, and tone. However, it lacked key questions in each core domain, and in response to requests from our codesign group, new questions were added to cover consideration as a whole person, coordination, care plans, carer involvement, and a single coordinator. Cognitive interviews, on-going codesign, and mapping to core P3C domains resulted in the refinement of the questionnaire to 11 items with 1 trigger question. The 11-item modified version was renamed the P3C Experiences Questionnaire.

          Conclusions:

          Due to a dearth of brief measures available to capture people’s experience of P3C for routine practice, an existing measure was modified using an iterative process of adaption and validation through codesign workshops. Next steps include psychometric validation and modification for people with dementia and learning difficulties.

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          Most cited references23

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          Development and validation of the Patient Assessment of Chronic Illness Care (PACIC).

          There is a need for a brief, validated patient self-report instrument to assess the extent to which patients with chronic illness receive care that aligns with the Chronic Care Model-measuring care that is patient-centered, proactive, planned and includes collaborative goal setting; problem-solving and follow-up support. A total of 283 adults reporting one or more chronic illness from a large integrated health care delivery system were studied. Participants completed the 20-item Patient Assessment of Chronic Illness Care (PACIC) as well as measures of demographic factors, a patient activation scale, and subscales from a primary care assessment instrument so that we could evaluate measurement performance, construct, and concurrent validity of the PACIC. The PACIC consists of 5 scales and an overall summary score, each having good internal consistency for brief scales. As predicted, the PACIC was only slightly correlated with age and gender, and unrelated to education. Contrary to prediction, it was only slightly correlated (r = 0.13) with number of chronic conditions. The PACIC demonstrated moderate test-retest reliability (r = 0.58 during the course of 3 months) and was correlated moderately, as predicted (r = 0.32-0.60, median = 0.50, P < 0.001) to measures of primary care and patient activation. The PACIC appears to be a practical instrument that is reliable and has face, construct, and concurrent validity. The resulting questionnaire is in the public domain, and recommendations for its use in research and quality improvement are outlined.
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            Cognitive Interviewing

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              Measuring patients' perceptions of patient-centered care: a systematic review of tools for family medicine.

              Patient-centered care is widely acknowledged as a core value in family medicine. In this systematic review, we aimed to identify and compare instruments, subscales, or items assessing patients' perceptions of patient-centered care in family medicine. We conducted a systematic literature review using the MEDLINE, Embase, and Cochrane databases covering 1980 through April 2009, with a specific search strategy for each database. The search strategy was supplemented with searching by hand and expert suggestions. We looked for articles meeting all of the following criteria: (1) describing self-administered instruments measuring patient perceptions of patient-centered care; (2) reporting quantitative or psychometric results of development or validation; (3) being relevant to an ambulatory family medicine context. The quality of each article retained was assessed using a modified version of the Standards for Reporting of Diagnostic Accuracy. Instrument' items were mapped to dimensions of a patient-centered care conceptual framework. Of the 3,045 articles identified, 90 were examined in detail, and 26, covering 13 instruments, met our inclusion criteria. Two instruments (5 articles) were dedicated to patient-centered care: the Patient Perception of Patient-Centeredness and the Consultation Care Measure, and 11 instruments (21 articles) included relevant subscales or items. The 2 instruments dedicated to patient-centered care address key dimensions but are visit-based, limiting their applicability for the study of care processes over time, such as chronic illness management. Relevant items from the 11 other instruments provide partial coverage of the concept, but these instruments were not designed to provide a specific assessment of patient-centered care.
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                Author and article information

                Journal
                J Patient Exp
                JPX
                spjpx
                Journal of Patient Experience
                SAGE Publications (Sage CA: Los Angeles, CA )
                2374-3735
                2374-3743
                17 January 2018
                September 2018
                : 5
                : 3
                : 201-211
                Affiliations
                [1 ]Plymouth University Peninsula Schools of Medicine and Dentistry, Plymouth, United Kingdom
                [2 ]NIHR CLAHRC South West Peninsula (PenCLAHRC), Peninsula Schools of Medicine and Dentistry, Plymouth University, Plymouth, United Kingdom
                [3 ]Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, Centre for Rehabilitation Research in Oxford, University of Oxford, Oxford, United Kingdom
                Author notes
                [*]Helen Lloyd, Plymouth University Peninsula Schools of Medicine and Dentistry, Room N10, ITTC Building, Davy Road, Plymouth Science Park, Derriford, Plymouth PL6 8BX, United Kingdom. Email: helen.lloyd-1@ 123456plymouth.ac.uk
                Author information
                http://orcid.org/0000-0002-2916-1874
                Article
                10.1177_2374373517748642
                10.1177/2374373517748642
                6134538
                30214927
                3be1f1ca-f1e7-46e5-b1b5-8acd948af4b7
                © The Author(s) 2018

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

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                Research Articles

                clinician–patient relationship,patient/relationship centered skills,patient expectations,patient feedback,quality improvement,relationships in health care,survey data

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