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

BACKGROUND: The 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. METHODS: Medline, 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. RESULTS: Across 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. CONCLUSIONS: There 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.