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

Kok, M. de; Sixma, H.; Kessels, Alfons G.H.; Dirksen, Carmen D.; Spijkers, K.; Velde, Cornelis J.H. van de; Roukema, Jan A.; Ent, F.W.C. van der; Finaly-Marais, C.; Meyenfeldt, M.F. von

doi:10.1136/qshc.2007.025890

Cited by 11 publications

(28 citation statements)

References 26 publications

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“…Six studies were conducted in the USA [32,35,42-44,47], five in The Netherlands [37,39,40,50,52], three in England [41,49,54], two in France [53,55], and one in Australia [33], Canada [34], Europe and Asia [38], Germany [46] and Japan [48]. Seventeen studies recruited cancer patients from hospitals or treatment centres [33,34,38-44,46-50,53-55], whereas only one study recruited patients via a population-based cancer registry [32]. The sample sizes in each study ranged from 82 to 2659 cancer patients and the consent rates varied from 43% to 85%.…”

Section: Resultsmentioning

confidence: 99%

“…As shown in Table 2, 15 measures examined patients’ experiences of care [32,33,37,39-44,48-50,52,53,55] while 6 measured satisfaction [34,35,38,46,47,54]. The number of items for each measure ranged from 15 to 152, and the number of subscales ranged from 1 to 15.…”

Section: Resultsmentioning

confidence: 99%

“…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].…”

Section: Resultsmentioning

confidence: 99%

“…In contrast, only five measures assessed the “involvement and wellbeing of family and friends”. Thirteen measures addressed all the IOM criteria for the emotional support dimension [32-34,37-41,43,48,52,53,55], 8 measures for information, communication and education [32,37,47,48,50,52,54,55] and one measure for physical comfort [44]. None of the measures addressed all the IOM criteria within the dimensions of respect for patient values, preferences and needs; coordinated and integrated care; and involvement and wellbeing of family and friends.…”

Section: Resultsmentioning

confidence: 99%

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

et al. 2014

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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.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

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

et al. 2014

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show abstract

“…The only way to measure this is to ask the patient and measure the patient-reported outcome. This approach has become mainstream, especially in cancer research [7,8] and many questionnaires have been developed, such as those focused on the patient experience [9,10,11,12,13,14,15,16,17,18,19,20,21,22] and quality of life [23,24,25]. Some studies have supported the idea that better survivorship comes along with better patient-reported outcomes, and patient-reported outcomes are routinely collected to improve the quality of care in some countries and regions, such as the U.S.…”

Section: Introductionmentioning

confidence: 99%

Insight into Patients’ Experiences of Cancer Care in Taiwan: An Instrument Translation and Cross-Cultural Adaptation Study

Chung

Tung

et al. 2018

IJERPH

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Background: Since Taiwan launched the Cancer Prevention Act in 2003, several prevention strategies and early detection programs have been implemented to reduce the incidence, morbidity and mortality rates of cancer. However, most of the programs have concentrated on healthcare providers. Evaluations from the patient’s perspective have been lacking. Thus, in this study a cancer patient experience questionnaire was developed in the Taiwanese context and a preliminary nationwide investigation was conducted on the status of cancer care from the patient’s perspective. Methods: An extensive literature review was first conducted to collect information on the existing instruments used to measure the cancer patient’s experience. Thereafter, a multidisciplinary expert panel was convened to select an optimal instrument based on the IOM’s six domains for evaluating patient-centered care. The European Organisation for Research and Treatment of Cancer (EORTC) translation procedure was applied to the questionnaire for cross-cultural adaptation. A nationwide field test was then implemented at certificated cancer care hospitals. Results: Fifteen questionnaires were collected for the literature review. The expert panel selected the National Cancer Patient Experience Survey based on the IOM’s recommendations. After cross-cultural translation of the questionnaire, a total of 4000 questionnaires were administered in 19 certificated cancer care hospitals and two major cancer patient associations, with 1010 being returned (25.25% response rate). Most of the respondents were middle-aged, and 70% were female. The respondents reported they had a good experience with cancer care, except for “Home care and support” and “Finding out what was wrong with you”. Stratified analysis was conducted, with the results showing that the cancer patients’ experiences varied depending on their sociodemographic and cancer-related characteristics. Conclusions: A Taiwanese version of the cancer patient experience survey questionnaire was developed. Its results showed that the cancer patient’s experiences varied, depending on the patient’s age, cancer type, and cancer history. This study can be used as a basis to establish a patient-centered care model for cancer care in Taiwan.

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The development of a financial toxicity patient‐reported outcome in cancer: The COST measure

Souza

Yap

Hlubocky

et al. 2014

Cancer

464

461

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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. Cancer 2014;120:3245–3253. © 2014 American Cancer Society.

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

Cited by 11 publications

References 26 publications

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

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

Insight into Patients’ Experiences of Cancer Care in Taiwan: An Instrument Translation and Cross-Cultural Adaptation Study

The development of a financial toxicity patient‐reported outcome in cancer: The COST measure

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