Are we missing the Institute of Medicine’s mark? A systematic review of patient-reported outcome measures assessing quality of patient-centred cancer care

Abstract

BackgroundThe Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare. These dimensions outline that care must be: 1) respectful to patients’ values, preferences, and expressed needs; 2) coordinated and integrated; 3) provide information, communication, and education; 4) ensure physical comfort; 5) provide emotional support—relieving fear and anxiety; and 6) involve family and friends. However, whether patient-reported outcome measures (PROMs) comprehensively cover these dimensions remains unexplored. This systematic review examined whether PROMs designed to assess the quality of patient-centred cancer care addressed all six IOM dimensions of patient-centred care and the psychometric properties of these measures.MethodsMedline, PsycINFO, Current Contents, Embase, CINAHL and Scopus were searched to retrieve published studies describing the development and psychometric properties of PROMs assessing the quality of patient-centred cancer care. Two authors determined if eligible PROMs included the six IOM dimensions of patient-centred care and evaluated the adequacy of psychometric properties based on recommended criteria for internal consistency, test-retest reliability, face/content validity, construct validity and cross-cultural adaptation.ResultsAcross all 21 PROMs, the most commonly included IOM dimension of patient-centred care was “information, communication and education” (19 measures). In contrast, only five measures assessed the “involvement of family and friends.” Two measures included one IOM-endorsed patient-centred care dimension, two measures had two dimensions, seven measures had three dimensions, five measures had four dimensions, and four measures had five dimensions. One measure, the Indicators (Non-small Cell Lung Cancer), covered all six IOM dimensions of patient-centred care, but had adequate face/content validity only. Eighteen measures met the recommended adequacy criteria for construct validity, 15 for face/content validity, seven for internal consistency, three for cross-cultural adaptation and no measure for test-retest reliability.ConclusionsThere are no psychometrically rigorous PROMs developed with cancer patients that capture all six IOM dimensions of patient-centred care. Using more than one measure or expanding existing measures to cover all six patient-centred care dimensions could improve assessment and delivery of patient-centred care. Construction of new comprehensive measures with acceptable psychometric properties that can be used with the general cancer population may also be warranted.

Barriers to the Accessibility and Continuity of Health-Care Services in People with Multiple Sclerosis

“…34 Optimizing the structure, processes, and interactions between health-care providers and patients is crucial to achieving high-quality care. 35 Access to and active participation in health care are directly and inherently linked to health outcomes, making the awareness and understanding of health-care barriers for people with MS a critical area of focus. In the present study, we summarized key barriers as identified and explicated by patients with MS.…”

Psychometric properties of implementation measures for public health and community settings and mapping of constructs against the Consolidated Framework for Implementation Research: a systematic review

“…The psychometric properties of each measure were independently assessed by two authors using the same criteria described in previous systematic reviews [23, 24] and according to the guidelines for the development and use of tests, including the Standards for Educational and Psychological Testing [5, 25, 26]. The Standards provides a frame of reference to ensure all relevant issues are addressed when developing a measure and allows the quality of measures to be evaluated by those who wish to use them [25].…”

Barriers to patient and family‐centred care in adult intensive care units: A systematic review

“…Attempts to change disease‐focused care have mainly considered and advocated for the patient and family‐centred care (PFCC) approach. The Institute of Medicine (IOM) earmarked six dimensions of healthcare improvement which included the following (a) patient‐centred care; (b) care should be respectful of patients’ values, preferences and expressed needs; (c) coordinated and integrated; (d) involve provision of information, communication and education; (e) ensure physical comfort; and (f) care that provides emotional support, relieves fear and anxiety and care that involves family and friends (Tzelepis et al, ). Indeed, the IOM report increased the enthusiasm of implementing PFCC in hospitals (Ciufo, Hader, & Holly, ).…”