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Impact of using patient-reported outcome measures in routine clinical care of paediatric patients with chronic conditions: a systematic review protocol.

ABSTRACT: INTRODUCTION:Chronic diseases among children are associated with lower health-related quality of life (HRQOL) and higher utilisation of healthcare services. Integrating Patient-Reported Outcomes Measures (PROMs) in routine clinical care has been shown to reduce utilisation of healthcare services while improving patient outcomes. The objectives of our study are to: (1) identify previously implemented and evaluated PROMs for chronic conditions in paediatric settings; (2) consolidate the evidence to evaluate the impact of using PROMs on HRQOL, healthcare utilisation, patient outcomes (eg, symptoms control) and quality of care among paediatric patients with chronic conditions. The findings from this review will inform the future integration of PROMs in paediatric clinical practice. METHODS AND ANALYSIS:We will systematically search the following electronic databases: MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane library. Reference lists of included studies will also be searched in Web of Science (Thomson Reuters) database to ensure more complete coverage. Two reviewers will independently screen the studies and abstract the data using standardised form. Extracted data will be analysed and synthesised. Finally, a narrative synthesis of summarised data will be presented. ETHICS AND DISSEMINATION:Ethical approval is not required, as the proposed systematic review will use data from published research articles. The results of this study will be disseminated through publication in peer-reviewed journals, scientific conferences and meetings, and the lead author's doctoral dissertation. PROSPERO REGISTRATION NUMBER:CRD42018109035.

SUBMITTER: Bele S

PROVIDER: S-EPMC6475156 | biostudies-literature | 2019 Mar

REPOSITORIES: biostudies-literature

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Impact of using patient-reported outcome measures in routine clinical care of paediatric patients with chronic conditions: a systematic review protocol.

Bele Sumedh S Mohamed Bijan B Chugh Ashton A Haverman Lotte L Santana Maria-Jose MJ

BMJ open 20190330 3

<h4>Introduction</h4>Chronic diseases among children are associated with lower health-related quality of life (HRQOL) and higher utilisation of healthcare services. Integrating Patient-Reported Outcomes Measures (PROMs) in routine clinical care has been shown to reduce utilisation of healthcare services while improving patient outcomes. The objectives of our study are to: (1) identify previously implemented and evaluated PROMs for chronic conditions in paediatric settings; (2) consolidate the ev ...[more]

PMID: 30928963

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Project description:BACKGROUND:Patient-reported outcome measures (PROMs) are tools that enable patients to directly report their own assessments of well-being, or symptoms, in a structured and consistent way. Despite the usefulness of PROMs in optimizing health outcomes, their use in clinical practice is not routine. PROMs are complex to integrate into the clinical setting, with many elements potentially impacting on the success of implementation. For this reason, a protocol has been developed to guide a systematic review to collate information on implementation as presented in the randomized controlled trials (RCTs) to date. OBJECTIVE:The primary objective of this systematic review is to identify and synthesize factors available from RCT data about the fidelity of PROM interventions in clinical practice. The secondary objective will be an assessment of how implementation factors impact fidelity outcomes. METHODS:Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting standards will be followed. MEDLINE, EMBASE, and the Cumulative Index to Nursing and Allied Health Literature via OvidSP will be accessed using a defined search strategy. Grey literature and ClinicalTrials.gov will be reviewed for unpublished studies. Data extraction will be done to identify fidelity and factors impacting implementation, summarized using a narrative synthesis. An evidence-based implementation science framework will assist in identifying potential elements of importance and their effect on the process and outcomes of implementation. A meta-analysis to assess the impact of implementation factors will be attempted. A Cochrane risk of bias tool will be used. RESULTS:This protocol has received funding, and searches of databases will commence at the end of May 2019. It is planned that this systematic review will be finalized for publication in (December) 2019. CONCLUSIONS:Applying an implementation science evidence-based framework to the published literature may identify factors present in the data that impact on the implementation of PROMs into routine clinical care. This systematic review aims to improve understanding of how these factors impact the fidelity of this intervention, so that PROMs can be more effectively used in the care of patients. This systematic review can also offer more detailed information about the process and outcomes of successful implementation of PROMs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):PRR1-10.2196/14579.

Project description:Background and objectivesPatient-reported outcome measures invite patients to self-report aspects of their quality of life and have been reported to enhance communication with clinicians. We aimed to examine how routine use of patient-reported outcome measures in in-center hemodialysis units influenced patient-clinician communication.Design, setting, participants, & measurementsA concurrent, longitudinal, mixed-methods approach was used. We used data from a cluster randomized controlled trial of 17 hemodialysis units in northern Alberta that introduced a patient-reported outcome measures intervention. Patient-clinician communication was assessed using a modified Communication Assessment Tool. Using interpretive description, we explored patients' and nurses' perceptions of communication pertaining to routine patient-reported outcome measure use. Through purposeful sampling, we interviewed ten patients and eight nurses and conducted six observations in the dialysis units, which were documented in field notes. We reviewed 779 patient responses to open-ended survey questions from randomized controlled trial data. Qualitative data were thematically analyzed.ResultsOverall, patient-reported outcome measure use did not substantively improve patient-clinician communication. There was a small positive change in mean total Communication Assessment Tool scores (range, 1-5) from baseline to 12 months in patient-reported outcome measure use units (0.25) but little difference from control group units that did not use patient-reported outcome measures (0.21). The qualitative findings provide in-depth insights into why patient-reported outcome measure use did not improve patient-clinician communication. The purpose of patient-reported outcome measure use was not always understood by patients and clinicians; patient-reported outcome measures were not implemented as originally intended in the trial, despite clinician training; there were challenges using patient-reported outcome measures as a means to communicate; and patient-reported outcome measure use was perceived to have limited value.ConclusionsWhile patient-reported outcome measures use did not improve patient-clinician communication, qualitative data suggest implementation challenges, including limited clarity of purpose and perceived limited value, that may have limited the effectiveness of the intervention.

Project description:BackgroundThere is growing interest in the use of routine patient-reported outcome measures (PROMs) to influence the care of individual patients with stroke. However, there are significant gaps in our understanding as to how PROMs influence post-stroke patient care and clinical practice. This is due to factors including the number of purported uses for PROMs and that PROMs are complex interventions, which attempt to stimulate varied actions or behaviours. Therefore, the objective of this realist synthesis is to offer theory-based explanations as to how PROMs influence post-stroke clinical practice and patient care.MethodsThis is a protocol for a realist synthesis, which involves three distinct phases: theory building (phase 1), theory testing and refinement (phase 2) and synthesis (phase 3). Phase 1 will develop initial rough programme theories (IRPTs), through literature searches (from January 2000 onwards) of MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library and the grey literature. Only secondary sources will be included that contribute to the development of IRPTs. Only two IRPTs, prioritised by the stakeholder group, will be taken forward to be tested and refined during phase 2. Further novel searches will be employed in phase 2, utilising the same criteria as phase 1; however, phase 2 searches will not utilise grey literature searches, and only primary research studies that contribute to the refinement of programme theories under investigation will be included. Two independent reviewers will screen and select all returned results. The reviewers will code and annotate relevant sources, resulting in 'fragments' to be extracted and graded based on the richness of their contribution to explanation and causal insight. Further, these fragments will be organised into 'Context-Mechanism-Outcome' configurations. Phase 3 of the review will involve the synthesis of context-mechanism-outcome configurations to form middle-range theory-based explanations and developed logic models for stakeholders to understand how PROMs in post-stroke clinical practice and patient care work for whom, how and under what circumstances.DiscussionThe resulting realist synthesis will provide guidance on the implementation of PROMs within routine post-stroke clinical practice and patient care and act as a touchstone for further testing and refinement of PROMs programmes.Systematic review registrationPROSPERO CRD42020138649 .

Project description:BACKGROUND:Patients with cystic fibrosis (CF) can struggle with burdensome symptoms and treatment regimens that negatively affect every aspect of their life. As physiological parameters can fail to capture these complications, the assessment of health-related quality of life (HRQOL) has gained prominence. HRQOL can be measured using standardized patient questionnaires called patient-reported outcome measures (PROMs). The Australian Cystic Fibrosis Data Registry (ACFDR) collects clinical data on adult and pediatric patients with CF. The incorporation of PROMs into the ACFDR would enable monitoring of HRQOL trends, benchmarking of HRQOL outcomes, and support of HRQOL research in CF. OBJECTIVE:Prior to incorporation of a PROM in the ACFDR, this systematic review was planned to evaluate whether any suitable PROMs are currently being used for CF. METHODS:This systematic review will be conducted in compliance with the PRISMA-P (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols) guidelines. MEDLINE, EMBASE, Scopus, CINAHL (Cumulative Index of Nursing and Allied Health Literature), PsycINFO, and Cochrane Library databases were searched for articles published between January 2009 and February 2019 on the use of PROMs to measure HRQOL in adult and pediatric patients with CF. Study designs such as observational studies, reviews and validation studies were included. Studies describing randomized controlled trials, dissertations, books, guideline statements, and abstracts were excluded. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) risk of bias checklist was used to assess the methodological quality of included studies. A descriptive synthesis of the results will be undertaken in line with the outcomes of this study. RESULTS:As of July 2019, the search has been conducted and 4530 records were screened. After two phases of screening, 97 studies were included in the final review and subjected to data extraction. Reviewers are currently in the process of critical appraisal. CONCLUSIONS:This review will identify any PROM(s) that may be used to measure HRQOL in the ACFDR. TRIAL REGISTRATION:PROSPERO International Prospective Register of Systematic Reviews CRD42019126931; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=126931.

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Impact of using patient-reported outcome measures in routine clinical care of paediatric patients with chronic conditions: a systematic review protocol.

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Impact of using patient-reported outcome measures in routine clinical care of paediatric patients with chronic conditions: a systematic review protocol.

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