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Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs).

ABSTRACT: BACKGROUND:Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project. METHODS:CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, CHAQ and CHU 9D. A subset participated in face-to-face interviews and completed the PROM/PREM 1 week later. The OMERACT filter was applied and the three domains of validation assessed. Truth assessments included cognitive interviewing, sensitivity analysis and Spearman's correlations. Discrimination assessments included specificity and reliability testing. Feasibility was assessed using time to form completion and proportion of missing data. RESULTS:Eighty-two CYP and their families were recruited; ten cognitive interviews and fifteen PROM/PREM test/retests were conducted. Truth: CYP and parents understood the PROM/PREM and felt important areas were covered. PROM criteria had high sensitivities (>?70%) against similar items on the CHU 9D, with the exception of fatigue (58%). Correlations between similar PROM and CHU 9D criteria were moderate to very strong (coefficients 0.40-0.82.) Discrimination: high specificities (>?70%) on corresponding PROM and CHU 9D domains. Feasibility: median completion times for PROM 60 s (IQR 38-75) and PREM 49 s (IQR 30-60) respectively. CONCLUSION:The CAPTURE-JIA PROM and PREM are valid and feasible in UK paediatric rheumatology clinics. Embedding routine collection into clinical care would be a major step towards improving quality of care.

SUBMITTER: Lunt LE

PROVIDER: S-EPMC7678156 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature

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Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs).

Lunt Laura E LE Shoop-Worrall Stephanie S Smith Nicola N Cleary Gavin G McDonagh Janet J Smith Andrew D AD Thomson Wendy W McErlane Flora F

Pediatric rheumatology online journal 20201119 1

<h4>Background</h4>Measuring the outcomes that matter to children and young people (CYP) with juvenile idiopathic arthritis (JIA), is a necessary precursor to patient-centred improvements in quality of clinical care. We present a two-centre validation of novel JIA patient-reported outcome and experience measures (PROM and PREM) developed as part of the CAPTURE-JIA project.<h4>Methods</h4>CYP with JIA were recruited from paediatric rheumatology clinics, completing the CAPTURE-JIA PROM and PREM, C ...[more]

PMID: 33213474

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Project description:BackgroundPatient-reported outcome and experience measures (PROMs and PREMs, respectively) are evidence-based, standardized questionnaires that can be used to capture patients' perspectives of their health and health care. While substantial investments have been made in the implementation of PROMs and PREMs, their use remains fragmented and limited in many settings. Analysis of multi-level barriers and enablers to the implementation of PROMs and PREMs has been hampered by the lack of use of state-of-the-art implementation science frameworks. This umbrella review aims to consolidate available evidence from existing quantitative, qualitative, and mixed-methods systematic and scoping reviews covering factors that influence the implementation of PROMs and PREMs in healthcare settings.MethodsAn umbrella review of systematic and scoping reviews will be conducted following the guidelines of the Joanna Briggs Institute (JBI). Qualitative, quantitative, and mixed methods reviews of studies focusing on the implementation of PROMs and/or PREMs in all healthcare settings will be considered for inclusion. Eight bibliographical databases will be searched. All review steps will be conducted by two reviewers independently. Included reviews will be appraised and data will be extracted in four steps: (1) assessing the methodological quality of reviews using the JBI Critical Appraisal Checklist; (2) extracting data from included reviews; (3) theory-based coding of barriers and enablers using the Consolidated Framework for Implementation Research (CFIR) 2.0; and (4) identifying the barriers and enablers best supported by reviews using the Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach. Findings will be presented in diagrammatic and tabular forms in a manner that aligns with the objective and scope of this umbrella review, along with a narrative summary.DiscussionThis umbrella review of quantitative, qualitative, and mixed-methods systematic and scoping reviews will inform policymakers, researchers, managers, and clinicians regarding which factors hamper or enable the adoption and sustained use of PROMs and PREMs in healthcare settings, and the level of confidence in the evidence supporting these factors. Findings will orient the selection and adaptation of implementation strategies tailored to the factors identified.Systematic review registrationPROSPERO CRD42023421845.

Project description:BackgroundHealthcare requires patient feedback to improve outcomes and experience. This study undertook a systematic review of the depth, variability, and digital suitability of current patient-reported outcome measures (PROMs) in patients undergoing laparoscopic cholecystectomy.MethodsA PROSPERO-registered (registration number CRD42021261707) systematic review was undertaken for all relevant English language articles using PubMed version of MEDLINE, Scopus, and Web of Science electronic databases in June 2021. The search used Boolean operators and wildcards and included the keywords: laparoscopic cholecystectomy AND patient outcome OR patient-reported outcome OR patient-reported outcome measure OR PRO OR PROM. Medical Subjects Heading terms were used to search PubMed and Scopus. Articles published from 1 January 2011 to 2 June 2021 were included.ResultsA total of 4960 individual articles were reviewed in this study, of which 44 were found to evaluate PROMs in patients undergoing laparoscopic cholecystectomy and underwent methodological index for non-randomized studies (MINORS) grading. Twenty-one articles spanning 19 countries and four continents met all inclusion criteria and were included in the qualitative data synthesis. There was significant heterogeneity in PROMs identified with eight different comprehensive PROM tools used in the 21 studies. There was wide variation in the time points at which PROMs were recorded. Fourteen of 21 studies recorded PROMs before and after surgery, and 7 of 21 recorded PROMs only after surgery. Follow-up intervals ranged from 3 days to 2 years after surgery.ConclusionsThis study identified that while post-laparoscopic cholecystectomy PROMs are infrequently measured currently, tools are widely available to achieve this in clinical practice. PROMs may not capture all the outcomes but should be incorporated into future cholecystectomy outcome research. The EQ-5D™ (EuroQoL Group, Rotterdam, the Netherlands) provides a simple platform for the modern digital era.

Project description:Aim To study (a) the covariation between patient reported experience measures (PREMs) and registered process measures of access and continuity when ranking providers in a primary care setting, and (b) whether registered process measures or PREMs provided more or less information about potential linkages between levels of access and continuity and explaining variables.BackgroundAccess and continuity are important objectives in primary care. They can be measured through registered process measures or PREMs. These measures do not necessarily converge in terms of outcomes. Patient views are affected by factors not necessarily reflecting quality of services. Results from surveys are often uncertain due to low response rates, particularly in vulnerable groups. The quality of process measures, on the other hand, may be influenced by registration practices and are often more easy to manipulate. With increased transparency and use of quality measures for management and governance purposes, knowledge about the pros and cons of using different measures to assess the performance across providers are important.MethodsFour regression models were developed with registered process measures and PREMs of access and continuity as dependent variables. Independent variables were characteristics of providers as well as geographical location and degree of competition facing providers. Data were taken from two large Swedish county councils. Findings Although ranking of providers is sensitive to the measure used, the results suggest that providers performing well with respect to one measure also tended to perform well with respect to the other. As process measures are easier and quicker to collect they may be looked upon as the preferred option. PREMs were better than process measures when exploring factors that contributed to variation in performance across providers in our study; however, if the purpose of comparison is continuous learning and development of services, a combination of PREMs and registered measures may be the preferred option. Above all, our findings points towards the importance of a pre-analysis of the measures in use; to explore the pros and cons if measures are used for different purposes before they are put into practice.

Project description:ObjectivesEvaluate construct validity of Patient-Reported Outcomes Measurement Information System (PROMIS) Paediatric measures of symptoms and functioning against measures of disease activity among youth with juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE).DesignCross-sectional associations among PROMIS measures and clinical metrics of disease activity were estimated.SettingSeven clinical sites of the Childhood Arthritis and Rheumatology Alliance (CARRA) in the USA.ParticipantsYouth aged 8-17 years enrolled in the CARRA Registry.InterventionPROMIS measures were collected and associations with clinical measures of disease activity estimated, by condition, in bivariate and multivariable analyses with adjustment for sociodemographics, insurance status, medications and disease duration.Main outcome measuresPROMIS Paediatric measures of mobility, physical activity, fatigue, pain interference, family relationships, peer relationships, depressive symptoms, psychological stress, anxiety, and meaning and purpose, and clinical metrics of disease.ResultsAmong 451 youth (average age 13.8 years, 71% female), most (n=393, 87%) had a JIA diagnosis and the remainder (n=58, 13%) had SLE. Among participants with JIA, those with moderate/high compared with low/inactive disease had, on average, worse mobility (multivariable regression coefficient and 95% CIs) (-7.40; -9.30 to -5.50), fatigue (3.22; 1.02 to 5.42), pain interference (4.76; 3.04 to 6.48), peer relationships (-2.58; -4.52 to -1.64), depressive symptoms (3.00; 0.96 to 5.04), anxiety (2.48; 0.40 to 4.56) and psychological stress (2.52; 0.68 to 4.36). For SLE, youth with active versus inactive disease had on average worse mobility (-5.07; -10.15 to 0.01) but PROMIS Paediatric measures did not discriminate participants with active and inactive disease in adjusted analyses.ConclusionsSeven PROMIS Paediatric measures discriminated between active and inactive disease in youth with JIA. Results advance the usefulness of PROMIS for understanding well-being and improving interventions for youth with JIA, but larger studies are needed to determine utility in SLE cohorts.Trial registration numberNational Institute of Arthritis and Musculoskeletal and Skin Diseases (U19AR069522).

Project description:BACKGROUND:The use of Patient Reported Experience Measures (PREMs) has great potential in healthcare service improvement, but a limited use. This paper presents an empirical case of PREMs innovation in Italy, to foster patient data use up to the ward level, by keeping strengths and addressing weaknesses of previous PREMs survey experiences. The paper reports key lessons learned in this ongoing experience of action research, directly involving practitioners. METHODS:The aim of this paper is to present the results of an ongoing action research, encompassing the innovation of PREMs collection, reporting and use, currently adopted by 21 hospitals of two Italian regions. The continuous and systematic PREMs collection has been implemented between 2017 and 2019 and includes: a continuous web-based administration, using web-services; an augmented and positive questionnaire matching standard closed-ended questions with narrative sections; the inclusion and benchmarking of patient data within a shared performance evaluation system; public disclosure of aggregated anonymized data; a multi-level and real-time web-platform for reporting PREMs to professionals. The action research was carried out with practitioners in a real-life and complex context. The authors used multiple data sources and methods: observations, feedback of practitioners, collected during several workshops and meetings, and analysis of preliminary data on the survey implementation. RESULTS:A continuous and systematic PREMs observatory was developed and adopted in two Italian regions. PREMs participation and response rates tend to increase over time, reaching stable percentages after the first months. Narrative feedback provide a 'positive narration' of episodes and behaviours that made the difference to patients and can inform quality improvement actions. Real-time reporting of quantitative and qualitative data is enabling a gratifying process of service improvement and people management at all the hospitals' levels. CONCLUSIONS:The PREMs presented in this paper has been recognized by healthcare professionals and managers as a strategic and positive tool for improving an actual use of PREMs at system and ward levels, by measuring and highlighting positive deviances, such as compassionate behaviours.

Project description:IntroductionIn the Swiss canton of Valais, the first cases of SARS-CoV-2 were detected on 28 February 2020. Discharged patients' and their family caregivers' experiences in relation to safety, quality of care, trust and communication during the COVID-19 hospitalisation period remain unexplored. The study aims to collect the patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers.Methods and analysisPatients aged ≥18 years, hospitalised between 28 February and 11 May 2020 and then discharged home, plus their family caregivers will be invited to complete a self-administrated questionnaire made up of 14 closed questions and 1 open-ended question. The questionnaire will include items on the patient's hospital trajectory and assess the interpersonal trust placed in nurses and physicians based on Krajewska-Kułak et al's Trust in Nurse Scale and Anderson et al's Trust in Physician Scale. Participants' perceived stress will be assessed using Cohen et al's Perceived Stress Scale. Feelings of safety will be examined based on Dryhurst et al's questionnaire on Risk Perception During Pandemics. After ethical clearance, data will be collected using a postal paper questionnaire and via an online web link. Descriptive and inferential statistics will be computed, and the open question will undergo a qualitative thematic analysis. We will analyse perceptions of the different hospital trajectories experienced by patients undergoing surgery with and without a SARS-CoV-2 infection.Ethics and disseminationThe Human Research Ethics Committee of Vaud (2020-02025) authorised this study. Gathering experiences and learning about the impact of the COVID-19 pandemic on the social determinants of health among discharged patients and families fit in well with the Triple Aim framework and the PREMs survey. The study will formulate recommendations to support interventions in the face of the second wave of COVID-19 pandemic and their effects on patients' and their family caregivers' experiences.

Dataset Information

Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs).

Publications

Validation of novel patient-centred juvenile idiopathic arthritis-specific patient-reported outcome and experience measures (PROMs/PREMs).

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