A patient-centred instrument for assessment of quality of breast cancer care: Results of a pilot questionnaire

Department of Surgery, Maastricht University Medical Center, Maastricht, The Netherlands.
Quality and Safety in Health Care (Impact Factor: 2.16). 12/2010; 19(6):e40. DOI: 10.1136/qshc.2007.025890
Source: PubMed


In several breast cancer research environments, there was a need to develop a questionnaire that would (1) provide data on how breast cancer patients experience healthcare services, (2) address issues corresponding with patients' needs and expectations and (3) produce useful data for quality assessment and improvement projects aimed at breast cancer care. This article describes the first part of the quantitative process of item selection, instrument construction and optimisation based on the results of a pilot questionnaire.
Based on qualitative research, a pilot questionnaire with items formulated as "performance" and "importance" statements was developed and sent to all breast cancer patients operated on in the previous 3-15 months in five participating hospitals. Reduction criteria, exploratory factor analysis and reliability analysis were used as part of the process of instrument optimisation.
Of the 637 questionnaires sent out, 299 (47%) were returned and 276 (43%) were used for analyses. Out of the 72 quality items included in the pilot questionnaire, 42 items did not meet the inclusion criteria for the revised version. The remaining items refer to the factors patient education regarding aspects related to postoperative treatment, services by the breast nurse, services by the surgeon, patient education regarding activities at home and patient education regarding aspects related to preoperative treatment (Cronbach α = 0.70-0.89).
In this study, the number of items to be included in the self-administered questionnaire was reduced. The resulting set of items that determines patients' perceptions on quality of breast cancer care is easy to complete and enables anonymous responses. Further research can be aimed at establishing the reliability of the current questionnaire.

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    • "The type of response scales varied across the different instruments. The number of IOM-endorsed patient-centred care dimensions [1] that were included in each measure were as follows: two measures included one dimension [35,54], two measures had two dimensions [42,46], seven measures had three dimensions [34,39,41,47,48,50,55], five measures had four dimensions [32,33,37,49,53], and four measures had five dimensions [38,43,44,52]. Only one measure, the Indicators (Non-small Cell Lung Cancer) measure, covered all six dimensions of patient-centred care [40]. "
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    ABSTRACT: 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. 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. 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. 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.
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    ABSTRACT: Background: Cancer care is increasingly provided in the outpatient setting, requiring specific monitoring of care quality. The patients' perspective is an important indicator of care quality and needs to be assessed with well designed, psychometrically sound questionnaires. We performed a systematic literature review of currently available patient satisfaction measures for use in cancer outpatient care settings. Methods: We carried out MEDLINE/PubMed, PsycINFO, CINAHL, and Scopus searches of papers published over the past 15 years that describe cancer patient satisfaction questionnaires for use in the outpatient setting. We used the adapted COSMIN checklist to assess the quality of the questionnaires' measurement properties. Results: A total of 6677 citations were identified and 76 relevant articles were read, of which 55 were found either not to be relevant or to provide insufficient psychometric information. The remaining 21 studies pertained to 14 patient satisfaction questionnaires. Continuity and transition, accessibility, and involvement of family/friends were less frequently addressed despite their relevance in outpatient oncology. Almost half of the psychometric studies did not provide information on item level missing data. Most internal consistency estimates (Cronbach's α) were satisfactory. Few studies reported test-retest assessment (n = 5), used confirmatory factor analysis (n = 2), or assessed fit to a graded response item response theory model (n = 3). Only three questionnaires were cross-culturally validated. Conclusion: Important aspects of care may be missed by current patient satisfaction questionnaires for use in the cancer outpatient setting. Additional evidence is needed of their psychometric performance, especially for cross-cultural comparative assessments. Copyright © 2014 John Wiley & Sons, Ltd.
    No preview · Article · Sep 2014 · Psycho-Oncology
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    ABSTRACT: Background: Considering patients' experience is essential for optimal decision-making. However, despite increasing recognition of the impact of costs on oncology care, there is no patient-reported outcome measure (PROM) that specifically describes the financial distress experienced by patients. Methods: The content for a comprehensive score for financial toxicity (COST) was developed with a stepwise approach: step 1) a literature review and semistructured, qualitative interviews with patients for content generation; step 2) patients' assessment of the items for importance to their quality of life; step 3) pilot testing assessing interitem (IIC) and item-total (ITC) correlations to identify redundancy (Spearman rho, > 0.7) and statistically unrelated content (P > .05); and step 4) exploratory factor analysis. Sociodemographic data were collected. Results: In total, 155 patients with advanced cancer who were receiving treatment (20 patients in step 1, 35 patients in step 2, and 100 patients in steps 3 and 4) participated in the PROM development. In step 1, the literature was reviewed, and 20 patients generated 147 items, which were reduced to 58 items because of redundancy. In step 2, 35 patients rated the 58 items on importance, and 30 items were retained. In step 3, 46 patients assessed the 30 items, 14 items were excluded because of high IIC, and 3 were excluded because of nonsignificant ITC. In step 4, 2 items were discarded because of poor loadings in a factor analysis of 100 patients, resulting in an 11-item PROM. Conclusions: The content for a financial toxicity PROM was developed in 155 patients. The provisional COST measure demonstrated face and content validity as well as internal consistency and should be validated in larger samples.
    Full-text · Article · Oct 2014 · Cancer
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