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.
Highlights
The Institute of Medicine (IOM) has endorsed six dimensions of patient-centredness as crucial to providing quality healthcare
Of the remaining 163 publications that surveyed adult cancer patients, 121 examined the prevalence of features of care and/or characteristics associated with patient experiences and 14 validated an existing measure that was not eligible for the review
The EORTC IN-PATSAT32 was validated with Sri Lankan cancer patients [56]; the Modified version of the Perceived Involvement in Care Scale (M-PICS) was validated with Lithuanian cancer patients [57]; and the Oncology Patients’ Perceptions of the Quality Nursing Care Scale (OPPQNCS) was validated with Turkish cancer patients [58]. This is the first review to identify how many of the six IOM-endorsed dimensions of patient-centred care [1] are covered in existing Patient-reported outcome measures (PROMs) assessing the quality of cancer care
Summary
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. Within the area of patientcentredness, the IOM endorsed Gerteis et al’s six dimensions of patient-centred care [2] which state 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 [1]. Patients’ perceptions of quality of care have been associated with factors that directly affect the effectiveness and efficiency of health care such as the under-utilisation of treatments [10,11,12] and mistrust of the medical system [13,14]
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