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What really matters: a patient-centered instrument to evaluate health-related quality of life in cardiovascular disease.

ABSTRACT: Patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQoL) are increasingly used to guide decision-making in cardiovascular care. However, many of the existing PROMs are developed with limited patient involvement and overlook personal health preferences. We aim to develop a cardiovascular disease (CVD)-specific patient-centred preference-based PROM to assess and monitor HRQoL in CVD patients. A mixed-methods study consisting of several phases was conducted to identify important health items: (i) a scoping literature review, (ii) first- and second-round expert group meetings, (iii) interviews with CVD patients, and (iv) an online survey asking CVD patients to indicate from a large set those health items that are considered the most important. The literature review, expert group meetings, and patient interviews resulted in a list of 55 items potentially important to CVD patients. In total, 666 CVD patients responded to the survey. The following nine items were considered the most important by CVD patients: mobility, activities, self-reliance, fatigue, shortness of breath, chest pain, palpitations, anxiety/worrying, and sexual limitations. An electronic preference-based PROM consisting of these nine items was developed within a cloud-based environment for clinical implementation. Nine items considered the most important for health by CVD patients were identified and included in a new preference-based patient-centred PROM. This new CVD-specific PROM can be easily implemented using the electronic application and has the potential to improve quality of care for CVD patients.

SUBMITTER: Ties D

PROVIDER: S-EPMC9603540 | biostudies-literature | 2022 Oct

REPOSITORIES: biostudies-literature

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What really matters: a patient-centered instrument to evaluate health-related quality of life in cardiovascular disease.

Ties Daan D Singh Tajinder K TK Zhang Xin X van Veghel Dennis D Schalkers Inge I Groot Hilde E HE Krabbe Paul F M PFM van der Harst Pim P

European heart journal. Quality of care & clinical outcomes 20221001 7

<h4>Aims</h4>Patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQoL) are increasingly used to guide decision-making in cardiovascular care. However, many of the existing PROMs are developed with limited patient involvement and overlook personal health preferences. We aim to develop a cardiovascular disease (CVD)-specific patient-centred preference-based PROM to assess and monitor HRQoL in CVD patients.<h4>Methods and results</h4>A mixed-methods study consisting ...[more]

PMID: 34747990

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Project description:BackgroundThe concept of quality in health care has evolved, placing greater importance on the patient's needs, culture, and social context, as well as their participation in clinical decision-making, as highlighted by Mead and Bower's Person-Centered Care Model. The aim of the present study was to design and validate an instrument to assess the extent to which healthcare services provided by PEMEX (Petróleos Mexicanos) offer person-centered care according to user perceptions.MethodsThe first phase comprised the development of 57 items based on the analysis of responses from an open-ended questionnaire administered to 30 users of Pemex healthcare services. This questionnaire was designed considering the four factors of the person-centered care model, however, the high correlation between the 4 factors (i.e., r ≥ .80) indicated an overfactoring effect and consequently an increase in the risk of overfitting. Therefore, an exhaustive analysis of the instrument was performed, starting with the review of the individual behavior of each item, and carrying out exploratory and confirmatory factor analysis. Using a sample of 330 individuals, an exploratory factor analysis was perfomed. Afterward, a confirmatory factorial analysis was carried out with 335 participants. Finally, a new confirmatory factorial analysis included 130 participants due to the refinements made in the previous phase. Internal consistency was assessed using Cronbach's α and McDonald's ω at every phase.ResultsThe exploratory factor analysis retained 35 items in a single factor that accounted for 49% of the variance with an internal consistency of Cronbach's α and McDonald's ω = 0.97. Because the factorial structure by confirmatory factorial analysis was unsatisfactory, the initial model was refined, leading to the retention of 11 items and a final model with adjustment index of χ2 = 127.53, χ2/gl = 2.89, RMSEA = 0.07, IC RMSEA 0.06 to 0.09, TLI = 0.95 and CFI = 0.96, with an internal consistency of Cronbach's α and McDonald's ω = 0.93. Due to the refinements, a new confirmatory factorial analysis was conducted with suitable goodness-of-fit criteria in most items (χ2 = 151.44, χ2/gl = 3.43, RMSEA = 0.13, IC RMSEA 0.11 to 0.16, TLI = 0.93 and CFI = 0.94), resulting in a Cronbach's α and McDonald's ω = 0.98.ConclusionsThe instrument exhibits suitable psychometric properties to be employed to measure the degree to which medical care is patient centered. This instrument represents a strategy for promoting an innovative healthcare model.

Project description:ImportancePrevious research suggests that clinicians view realistic patient expectations as the most important nonaudiological factor in the decision to proceed with a cochlear implant (CI). However, clinicians have few data to determine whether patients' outcome expectations are realistic.ObjectiveTo address this unmet clinical need through the development and psychometric analysis of a new patient-reported outcome measure, the CI Quality of Life (CIQOL) Expectations.Design, setting, and participantsThis cross-sectional study was conducted at a tertiary CI center from February 26, 2020, to August 31, 2021. First, a team comprising 2 CI audiologists, a CI surgeon, a hearing scientist, and 2 psychometricians with experience in instrument development converted all items from the CIQOL-35 Profile instrument into statements reflecting expected outcomes. Then, cognitive interviews with 20 potential CI users assessed the clarity and comprehensiveness of the new instrument. Next, responses to the CIQOL-Expectations instrument for 131 potential adult CI candidates were psychometrically analyzed using confirmatory factor analysis and item response theory. Finally, degree to which patient expectations changed from before to after and their CI evaluation appointments was measured.InterventionThe CIQOL-Expectations instrument.ResultsOf 178 participants, 85 (47.8%) were female, and there was 1 (0.6%) Asian, 26 (14.6%) Black or African American, 1 (0.6%) Latinx, and 150 (84.3%) White individuals. No major content or grammar changes were identified during the cognitive interviews. Overall, all CIQOL domains demonstrated adequate to strong psychometric properties. Several domains did not meet all a priori established indicators of model fit or ability to separate CI users based on response patterns, but all met most indicators. Potential CI users demonstrated the highest mean (SD) expectation scores for the environment (70.2 [20.8]) and social (68.4 [18.0]) domains. In addition, the entertainment (20 [15.3%]) and environment (31 [24.4%]) domains had the highest percentage of patients with expectation scores of 100. Yet, normative CIQOL-35 Profile data from experienced CI users suggested few patients obtain this high degree of functional benefit after implant.Conclusions and relevanceThe results of this cross-sectional study suggest that the CIQOL-Expectations instrument may provide an opportunity to assess potential CI users' expected outcomes using modification of an established CIQOL instrument and a patient-centered framework. The included items and domains reflect real-world functional abilities valued by CI users and may provide opportunities for an evidence-based shared decision-making approach to the CI evaluation process. With this instrument, clinicians can compare individual patients' pre-CI outcome expectations with established normative data and provide appropriate counseling.

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What really matters: a patient-centered instrument to evaluate health-related quality of life in cardiovascular disease.

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What really matters: a patient-centered instrument to evaluate health-related quality of life in cardiovascular disease.

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