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Development and validation of a new patient experience tool in patients with serious illness.

ABSTRACT: Patients with serious chronic illnesses face increasingly complex care and are at risk of poor experience due to a fragmented health system. Most current patient experience tools are not designed to address the unique care aspects of this population and the few that exist are delivered too late in the disease trajectory and are not administered longitudinally which makes them less useful across settings.We developed a new tool designed to address these gaps. The 25 item scale was tested and refined using randomly cross-validated exploratory and confirmatory factor analyses. Participants were not yet hospice eligible but sick enough to receive benefits of a supportive care approach in the last 2 to 3 years of life. Full information maximum likelihood models were run to confirm the factor structure developed in exploratory analyses. Goodness-of-fit was assessed with the Comparative Fit Index, the Tucker-Lewis Index, and the Root Mean Square Error of Approximation. Test-retest reliability was assessed with the intraclass correlation coefficient and internal consistency of the final scale was examined using Cronbach's alpha.Exploratory factor analysis revealed three domains - Care Team, Communication, and Care Goals - after removing weak loading and cross loading items. The initial three domain measurement model suggested in the development cohort was tested in the validation cohort and exhibited poor fit X 2 (206)?=?565.37, p?

SUBMITTER: Fernstrom KM

PROVIDER: S-EPMC5203706 | biostudies-literature | 2016 Dec

REPOSITORIES: biostudies-literature

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Development and validation of a new patient experience tool in patients with serious illness.

Fernstrom Karl M KM Shippee Nathan D ND Jones Alissa L AL Britt Heather R HR

BMC palliative care 20161230 1

<h4>Background</h4>Patients with serious chronic illnesses face increasingly complex care and are at risk of poor experience due to a fragmented health system. Most current patient experience tools are not designed to address the unique care aspects of this population and the few that exist are delivered too late in the disease trajectory and are not administered longitudinally which makes them less useful across settings.<h4>Methods</h4>We developed a new tool designed to address these gaps. Th ...[more]

PMID: 28038669

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Project description:ObjectiveDespite the development of new biologic therapies, methotrexate (MTX) remains the preferred initial disease-modifying anti-rheumatic drug to treat rheumatoid arthritis (RA). Adherence to disease-modifying anti-rheumatic drugs is suspected to be highly variable potentially leading to reduced treatment effectiveness. This work aimed to develop and validate the Methotrexate Experience Questionnaire (MEQ), a tool to identify and characterize non-adherence to oral MTX.MethodsMEQ development included a literature review and qualitative interviews with RA patients and physicians in the United States. A retrospective, cross-sectional study using data from Optimum Patient Care Research Database, a large primary care database of electronic medical records in the United Kingdom, was conducted to finalize the MEQ and evaluate its psychometric properties.ResultsThree hundred seven e-consented subjects (66% women, mean age of 65 years) completed the MEQ remotely, and were included in this analysis. Item-convergent and divergent validity were generally supportive of the construct validity of the MEQ and Cronbach's alpha of 0.87 supported its reliability. The MEQ Total score presented statistically significant correlations of small to medium size with all selected concurrent scales, as expected; the highest correlation was obtained between the general acceptance score of ACCEPT and the MEQ Total score (0.55, p < 0.001). Known-groups validity was demonstrated as a logical pattern of higher MEQ scores was obtained for patients considered adherent with both the 6- and 12-month Proportion of Days Covered (mean MEQ total score 82.7 for 12-month PDC ≥ 80% against 76.3 for 12-month PDC < 80%, p< 0.0001). Additionally, a pattern of lower MEQ scores was obtained for patients with more severe disease assessed with Routine Assessment of Patient Index Data 3.ConclusionThe 24-item MEQ is a reliable and valid instrument to assess the adherence of RA patients taking MTX, potentially improving over historical refill rate metrics by providing insights into the individual reasons for lack of adherence. This information should facilitate clinician-patient discussions and help inform treatment decisions.

Project description:IntroductionThe aim of this study is to describe the mealtime experience using the qualitative components of the Austin Health Patient Mealtime Experience Tool (AHPMET) to complement the quantitative findings of this tool.MethodsA multiphase, cross-sectional study was undertaken across all sites of Austin Health (Victoria, Australia) between March 2020 and November 2021. Patient mealtime experience was measured using the AHPMET. Descriptive statistics and a deductive thematic analysis approach described the patients' mealtime experiences.ResultsQuestionnaire data were collected from 149 participants. Patients were most satisfied with staff interactions, and least satisfied with dimensions of food quality, specifically, flavour, presentation, and menu variety. Clinical symptoms, nutrition impact symptoms and the patient's position were barriers to consumption.DiscussionFood quality was perceived as the poorest aspect of patient satisfaction with the hospital foodservice, particularly flavour, presentation, and menu variety. Future foodservice quality improvements must prioritise improving food quality to have the greatest impact on patient satisfaction. While clinical and organisational systems have a role in improving mealtime experience and oral intake, communicating patient perceptions of the mealtime experience is critical for responding to current perceptions of hospital food quality.ConclusionMealtime experience in the hospital has a significant impact on oral intake and patients' wider perception of hospital services. Questionnaires have been used to capture patient satisfaction with foodservice in the hospital; however, no comprehensive questionnaires including qualitative questions that capture the broader mealtime experience have been validated across different hospital settings. The tool developed through this study can be implemented in any acute and subacute health service to provide feedback and improve the mealtime experience of patients. This has the capacity to improve mealtime intake, mitigate malnutrition, and improve quality of life and patient outcomes.

Project description:BackgroundLeakage is a major concern for people who use a stoma, but people's experience and its impact is not well understood. This study aimed to establish a definition of leakage through clinical and user input. This information was used to develop and validate a new measurement tool to understand the impact of leakage for people using a stoma appliance, in the UK, US, France, and Denmark.MethodsParticipants were recruited from a panel of users, hosted by Coloplast, that includes people who currently use Coloplast products. Six clinicians and 41 users took part in concept elicitation interviews. The qualitative findings were used to draft items. A panel of clinical experts was organized to develop and validate items (N = 6). Cognitive debrief interviews were conducted with five users in each country, which resulted in removing some items and revising the measure. A psychometric validation was conducted with 340 people in four countries whereby participants were asked to complete a series of measures online. Full psychometric analyses including validity and reliability were conducted.ResultsA final tool was established consisting of three domains related to the burden of leakage: "Emotional impact," "Usual and social activities," and "Coping and control." Convergent validity was evaluated by benchmarking to existing health-related quality of life instruments (domains of SF-36 and Ostomy-Q). This showed high correlation between domains of the leakage tool and other measures, in particular for the Emotional impact domain when compared with SF-36 Emotional well-being and Ostomy-Q Confidence domain (p < 0.001). Coping and control correlated moderately well with most PROs tested for except the physical functioning domains, which showed only modest correlation (p < 0.001). Usual and social activities correlated equally well with all domains. Internal consistency was high for Emotional impact and Usual and social activities (> 0.92).ConclusionThe study highlights how users define leakage and its impact in a way that is meaningful to them. This information has been used to develop an instrument to measure leakage which can potentially be used by clinicians and researchers. The instrument demonstrated evidence supporting its reliability and validity as an outcome measure to assess the impact of leakage in stoma care.

Dataset Information

Development and validation of a new patient experience tool in patients with serious illness.

Publications

Development and validation of a new patient experience tool in patients with serious illness.

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