Patient-reported quality indicators for osteoarthritis: a patient and public generated self-report measure for primary care.
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ABSTRACT:
SUBMITTER: Blackburn S
PROVIDER: S-EPMC5611660 | biostudies-literature | 2016
REPOSITORIES: biostudies-literature
Publications
Patient-reported quality indicators for osteoarthritis: a patient and public generated self-report measure for primary care.
Blackburn Steven S Higginbottom Adele A Taylor Robert R Bird Jo J Østerås Nina N Hagen Kåre Birger KB Edwards John J JJ Jordan Kelvin P KP Jinks Clare C Dziedzic Krysia K
Research involvement and engagement 20160317
<h4>Plain english summary</h4>People with osteoarthritis desire high quality care, support and information. However, the quality of care for people with OA in general practice is not routinely collected. Quality Indicators can be used to benefit patients by measuring whether minimum standards of quality care are being met from a patient perspective. The aim of this study was to describe how a Research User Group (RUG) worked alongside researchers to co-produce a set of self-reported quality indi ...[more]
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Project description:BackgroundThere is no physiotherapy-specific quality indicator tool available to evaluate physiotherapy care for people with hip and/or knee osteoarthritis (OA). This study aimed to develop a patient-reported quality indicator tool (QUIPA) for physiotherapy management of hip and knee OA and to assess its reliability and validity.MethodsTo develop the QUIPA tool, quality indicators were initially developed based on clinical guideline recommendations most relevant to physiotherapy practice and those of an existing generic OA quality indicator tool. Draft items were then further refined using patient focus groups. Test-retest reliability, construct validity (hypothesis testing) and criterion validity were then evaluated. Sixty-five people with hip and/or knee OA attended a single physiotherapy consultation and completed the QUIPA tool one, twelve- and thirteen-weeks after. Physiotherapists (n = 9) completed the tool post-consultation. Patient test-retest reliability was assessed between weeks twelve and thirteen. Construct validity was assessed with three predefined hypotheses and criterion validity was based on agreement between physiotherapists and participants at week one.ResultsA draft list of 23 clinical guideline recommendations most relevant to physiotherapy was developed. Following feedback from three patient focus groups, the final QUIPA tool contained 18 items (three subscales) expressed in lay language. The test-retest reliability estimates (Cohen's Kappa) for single items ranged from 0.30-0.83 with observed agreement of 64-94%. The intraclass correlation coefficient (ICC) and 95% confidence interval (CI) for the Assessment and Management Planning subscale was 0.70 (0.54, 0.81), Core Recommended Treatments subscale was 0.84 (0.75, 0.90), Adjunctive Treatments subscale was 0.70 (0.39, 0.87) and for the total QUIPA score was 0.80 (0.69, 0.88). All predefined hypotheses regarding construct validity were confirmed. However, agreement between physiotherapists and participants for single items showed large measurement error (Cohen's Kappa estimates ranged from - 0.04-0.59) with the ICC (95% CI) for the total score being 0.11 (- 0.14, 0.34).ConclusionsThe QUIPA tool showed acceptable test-retest reliability for subscales and total score but inadequate reliability for individual items. Construct validity was confirmed but criterion validity for individual items, subscales and the total score was inadequate. Further research is needed to refine the QUIPA tool to improve its clinimetric properties before implementation.
| S-EPMC7114805 | biostudies-literature
Project description:BackgroundStarting in 2005, Germany's health law required hospital quality reports to be published every two years by all acute care hospitals. The reports were intended to help patients and physicians make informed choices of hospitals. However, while establishing the quality indicators that form the content of the reports, the information needs of the target groups were not explicitly taken into account. Therefore, the aim of our study was to determine patient and physician opinion of the relevance of the reported quality indicators for choosing or referring to a hospital.MethodsConvenience samples of 50 patients and 50 physicians were asked to rate the understandability (patients), suitability (physicians) and relevance (both groups) of a set of 29 quality indicators. The set was drawn from the reports (24 indicators) and supplemented by five indicators commonly used in hospital quality reports. We analysed the differences in patient and physician ratings of relevance of all indicators by applying descriptive statistics, t-tests and Wilcoxon tests.ResultsOnly three indicators were considered not understandable by the interviewed patients and unsuitable by the interviewed physicians. The patients rated 19 indicators as highly or very relevant, whereas the physicians chose 15 indicators. The most relevant indicator for the patients was "qualification of doctors", and for the physicians "volume of specified surgical procedures". Patient and physician rankings of individual indicators differed for 25 indicators. However, three groups of indicators could be differentiated, in which the relevance ratings of patients and physicians differed only within the groups. Four of the five indicators that were added to the existing set of reported indicators ranked in the first or second group ("kindness of staff", "patient satisfaction", "recommendation", and "distance to place of living").ConclusionMost of the content of Germany's hospital quality reports seems to be useful for patients and physicians and influence their choice of hospitals. However, the target groups revealed that approximately one third of the indicators (mostly hospital structural characteristics), were not useful and hence could have been omitted from the reports. To enhance the usefulness of the reports, indicators on patient experiences should be added.
| S-EPMC2048956 | biostudies-literature
Project description:BackgroundAlthough hundreds of quality indicators (QIs) have been developed for various chronic conditions, QIs specific to multiple sclerosis (MS) care have only recently been developed. We sought to examine the extent to which the self-reported care of individuals with MS meets four recently developed MS QIs related to treatment of depression, spasticity, and fatigue and timely initiation of disease-modifying agents (DMAs) for relapsing MS.MethodsUsing the Sonya Slifka Study data, we examined the proportion of the MS population meeting four QIs (based on patient-reported data) in a sample of individuals with MS in 2007-2009. For the three diagnoses, meeting the QI was defined as receiving appropriate medication or seeing a provider for treatment of the diagnosis; for timely initiation, it was defined as receiving a DMA within 3 months of a relapsing MS diagnosis. We also examined differences in characteristics between respondents who met the QI versus those who did not.ResultsApproximately two-thirds of people with MS in this sample, per the predefined criteria, met the QIs for treatment of depression, management of spasticity, and DMA initiation within 3 months of a relapsing diagnosis, and approximately one-fifth met the QI for management of fatigue. There were some significant differences in characteristics between respondents who met the QIs and those who did not.ConclusionsThis study examined a subset of MS QIs based on patient-reported data. Additional data sources are needed to fully assess compliance with MS QIs.
| S-EPMC4984792 | biostudies-literature
Project description:BackgroundDespite increased incorporation of patient-reported outcome (PRO) measures into clinical trials, information generated from PROs remains largely absent from drug labeling and electronic health records, giving rise to concerns that such information is not adequately informing clinical practice.ObjectiveTo evaluate oncologists' perceptions concerning the availability and quality of information generated from PRO measures. Additionally, to identify whether an association exists between perceptions of availability and attitudes concerning quality.MethodAn online, 11-item questionnaire was developed to capture clinician perspectives on the availability and use of PRO data to inform practice. The survey also asked respondents to rate information on the basis of 4 quality metrics: "usefulness," "interpretability," "accessibility," and "scientific rigor."ResultsResponses were received from 298 of 1301 invitations sent (22.9% response rate). Perceptions regarding the availability of PRO information differed widely among respondents and did not appear to be linked to practice setting. Ratings of PRO quality were generally consistent, with average ratings for the 4 quality metrics between "satisfactory" and "good." A relationship was observed between ratings of PRO data quality and perceptions of the availability.ConclusionOncologists' attitudes toward the quality of information generated from PRO measures are favorable but not enthusiastic. These attitudes may improve as the availability of PRO data increases, given the association we observed between oncologists' ratings of the quality of PRO information and their perceptions of its availability.
| S-EPMC7427362 | biostudies-literature
Project description:ObjectivePatient-Reported Experience Measures (PREMs) provide valuable patient feedback on quality of care and have been associated with clinical outcomes. We aimed to test the reliability of a modified adult trauma care PREM instrument delivered to adolescents admitted to hospital for traumatic injuries, and their parents. Modifications included addition of questions reflecting teen-focused constructs on education supports, social network maintenance and family accommodation.ResultsForty adolescent patients and 40 parents participated. Test-retest reliability was assessed using Cohen's kappa, weighted kappa, and percent agreement between responses. Directionality of changed responses was noted. Most of the study ran during the COVID-19 pandemic. We established good reliability of questions related to in-hospital and post-discharge communication, clinical and ancillary care and family accommodation. We identified poorer reliability among constructs reflecting experiences that varied from the norm during the pandemic, which included "maintenance of social networks", "education supports", "scheduling clinical follow-ups" and "post-discharge supports". Parents, but not patients, demonstrated more directionality of change of responses by responding with more negative in-hospital and more positive post-discharge experiences over time between the test and retest periods, suggesting risk of recall bias. Situational factors due to the COVID-19 pandemic and potential risks of recall bias may have limited the reliability of some parts of the survey.
| S-EPMC9503226 | biostudies-literature
Project description:This study examines at-home monitoring of patient-generated phsyiologic health data and patient-reported outcomes. Patient-generated health data using at-home monitoring devices and smart device applications are used more and more to measure value and quality in cancer care. This trial may show whether at-home monitoring programs can improve the care of patients after hospital discharge from surgery.
| 2347952 | ecrin-mdr-crc
Project description:OBJECTIVE:To enable the valid and reliable measurement of patient experiences we previously published a multicenter multi-center validation of the Quality of Trauma Care Patient-Reported Experience Measure (QTAC-PREM). The purpose of this study was to derive a simplified, short form version of the QTAC-PREM to further enhance the feasibility of measuring patient experiences in injury care. To identify candidate items for the short form we reviewed the results of the original multi-center long form validation cohort study, which included 400 injury care patients and their family members recruited from three trauma centers. We only included the best performing items on the revised short form. RESULTS:The acute care component of the measure was shortened by 30% and the post-acute care component was shortened by 42%. We identified two subscales on the acute measure (information and communication; clinical and ancillary care) and one subscale on the post-acute measure (post-discharge information and communication). The measurement properties of the short form measure were similar to that of the validated long form. This short form assessment of patient injury care experiences offers a useful, practical, and easy tool for trauma centers to implement for service evaluation, quality improvement, and injury care research.
| S-EPMC5718023 | biostudies-literature
Project description:PurposeThe purpose of this study was to develop and validate a new comprehensive patient-reported measure of treatment burden-the Patient Experience with Treatment and Self-management (PETS).MethodsA conceptual framework was used to derive the PETS with items reviewed and cognitively tested with patients. A survey battery, including a pilot version of the PETS, was mailed to 838 multi-morbid patients from two healthcare institutions for validation.ResultsA total of 332 multi-morbid patients returned completed surveys. Diagnostics supported deletion and consolidation of some items and domains. Confirmatory factor analysis supported a domain model for scaling comprised of 9 factors: medical information, medications, medical appointments, monitoring health, interpersonal challenges, medical/healthcare expenses, difficulty with healthcare services, role/social activity limitations, and physical/mental exhaustion. Scales showed good internal consistency (α range 0.79-0.95). Higher PETS scores, indicative of greater treatment burden, were correlated with more distress, less satisfaction with medications, lower self-efficacy, worse physical and mental health, and lower convenience of healthcare (Ps < 0.001). Patients with lower health literacy, less adherence to medications, and more financial difficulties reported higher PETS scores (Ps < 0.01).ConclusionA comprehensive patient-reported measure of treatment burden can help to better characterize the impact of treatment and self-management burden on patient well-being and guide care toward minimally disruptive medicine.
| S-EPMC5753596 | biostudies-literature
Project description:BackgroundPhysical function constitutes a key component of outcome assessment for almost all osteoarthritis interventions. The aim was to compare physical function measured using a self-assessed performance-based test versus self-reported function using questionnaires among individuals with knee or hip osteoarthritis (OA) participating in a digital exercise and education therapy.MethodsWe analysed data from individuals aged 40 + years participating in the digital program. We extracted data on the self-assessed 30-second chair stand test (30s CST) and the function subscales of Knee injury/Hip disability and Osteoarthritis Outcome Score 12 (KOOS-12/HOOS-12) at enrolment and 3- (n = 10884) and 12-month (n = 3554) follow-ups. Participants completed Numeric Rating Scale (NRS) pain, EQ-5D-5L, and an external anchor: global rating of change scale. Correlations were assessed using the Spearman correlation coefficient, responsiveness using standardized response mean (SRM) and receiver operating characteristic (ROC) curves, and agreement using weighted percent of agreement and weighted Gwet's agreement coefficient.ResultsCorrelations were weak between the 30s CST and KOOS-12/HOOS-12 function (r < 0.35 for raw and r < 0.20 for change scores). Correlations with NRS pain and EQ-5D-5L were stronger for the KOOS-12/HOOS-12 function subscale than for 30s CST. Greater internal (SRM > 1 vs. SRM < 0.5) and lower external responsiveness were observed for the 30s CST versus the KOOS-12/HOOS-12 function, even though external responsiveness was generally inadequate for both (the area under the ROC curves < 0.7). The direction of change was similar for the two function measures for about 70% of subjects with moderate agreement between them (weighted Gwet's agreement coefficient range 0.45 to 0.50).ConclusionWeak correlations and moderate agreements between function measured using performance-based test and self-reported using KOOS-12/HOOS-12 in people with knee or hip OA suggest that they may capture different aspects of functional abilities in this population.
| S-EPMC11580485 | biostudies-literature
Project description:Objective or purposeTo develop and test a patient-reported outcome measure for assessing health-related quality of life (HRQOL) in surgically amenable epiphora.DesignQuestionnaire development and validation study.Participants201 patients with a cause of epiphora amenable to surgical intervention, recruited across three independent centres.Methods, intervention or testingThe watery eye quality of life (WEQOL) questionnaire was developed and refined according to defined psychometric standards. Both surgical and non-surgical participants completed WEQOL at baseline and follow-up (>3 months), along with the Lacrimal Symptom Questionnaire (Lac-Q), RAND Short Form Health Survey (SF-36) and Glasgow Benefit Inventory (GBI). Convergent validity of WEQOL was evaluated according to correlation (R > 0.40) with each of these additional tests. Responsiveness of WEQOL to intervention was evaluated according to patient-reported success. Test-retest reliability was assessed by the Bland-Altman method and intraclass correlation (ICC) in a subset of 64 participants at baseline.Main outcome measuresWEQOL construct validity, responsiveness and test-retest reliability.ResultsWEQOL was moderately correlated (R > 0.4) with the Lac-Q and several subscales of the SF-36 (physical role limitation, social, emotional role limitation and emotional well-being). A stronger correlation was found between the change in WEQOL at follow-up and GBI (R = 0.61). An appropriate graded response was found with a significant change in WEQOL score being observed in patients reporting successful (-28%, p < 0.0001) and partially successful surgery (-6%, p = 0.04), but not in those reporting unsuccessful surgery (+2%, p = 0.9). High test-retest reliability was observed (ICC = 0.93).ConclusionsThe WEQOL questionnaire has been developed systematically according to modern psychometric standards and has been designed to evaluate the quality of life in patients with epiphora that is of a surgically amenable cause. In this study, it has demonstrated appropriate test-retest reliability, responsiveness and construct validity.
| S-EPMC9232616 | biostudies-literature