Patient-centered Outcome Measures Research Articles

Awareness and Knowledge of General Dental Practitioners in Central India Towards Management of Patients with Temporomandibular Disorder: A Questionnaire-based Survey

Introduction: Temporomandibular Disorders (TMDs) accounts for common Orofacial Pain (OFP) arising from musculoskeletal origins, affecting almost 80% of the overall population. The multifactorial nature of the disease makes it difficult to diagnose and treat and is challenging to a considerable number of General Dental Practitioners (GDPs). They’re increasingly approached by patients for advice on TMD, but little is understood about how this disorder is addressed with in primary health care. Aim: To assess the awareness and knowledge regarding management of TMDs among GDPs in Central India. Materials and Methods: The cross-sectional study was conducted at Central India, Nagpur, Maharashtra, India from 20th June 2020 to 12th December 2020, including 200 general dental practitioners, who were registered under the Dental Council of India. A questionnaire consisting of 17 questions with reference to TMDs was designed and the questionnaire was circulated through a web designed program. The responses were collected, and data were analysed descriptively using Statistical Package for the Social Sciences (SPSS) statistics for windows version 24.0. Results: The mean age of the participants in the study was 24.80±1.63 years. Predominantly, participants were 164 females (82%). Among all the participants, about 181 (90.50%) of GDP’s were practicing Dentistry. The study findings suggest that the overall general practicing dentists encounter TMD cases and 162 (81%) of GDP’s treat patient at their clinic. A 76% of GDPs acknowledged the causative factor for TMD to be multifactorial and physical examination (88.50%) as the diagnostic tool. Most of the general practitioners around 126 (63%) preferred referring the patient to the specialist, maxillofacial surgeon. Among the practitioners who were confident in treating TMD, occlusal splint was the treatment of choice for 198 (96%) of the GDPs. Conclusion: Many GDPs lack standard protocol knowledge, felt insecure in TMD diagnosis, therapy decisions and treatment. There is a requirement for better quality evidence on which TMD diagnosis and treatment, including the event of a valid, reproducible patient-centered outcome measure to enable dental practitioners to feel confident in managing TMD. It is essential to train GDPs to identify individuals with TMDs through professional courses and training. It would be highly beneficial to educate the undergraduates regarding the diagnosis of TMDs in their curriculum.

Development of an international standard set of patient-centred outcome measures for overall paediatric health: a consensus process

ObjectiveTo develop an Overall Pediatric Health Standard Set (OPH-SS) of outcome measures that captures what matters to young people and their families and recognising the biopsychosocial aspects of health for...

Deep Brain Stimulation Selection Criteria for Parkinson's Disease: Time to Go beyond CAPSIT-PD.

Despite being introduced in clinical practice more than 20 years ago, selection criteria for deep brain stimulation (DBS) in Parkinson’s disease (PD) rely on a document published in 1999 called ‘Core Assessment Program for Surgical Interventional Therapies in Parkinson’s Disease’. These criteria are useful in supporting the selection of candidates. However, they are both restrictive and out-of-date, because the knowledge on PD progression and phenotyping has massively evolved. Advances in understanding the heterogeneity of PD presentation, courses, phenotypes, and genotypes, render a better identification of good DBS outcome predictors a research priority. Additionally, DBS invasiveness, cost, and the possibility of serious adverse events make it mandatory to predict as accurately as possible the clinical outcome when informing the patients about their suitability for surgery. In this viewpoint, we analyzed the pre-surgical assessment according to the following topics: early versus delayed DBS; the evolution of the levodopa challenge test; and the relevance of axial symptoms; patient-centered outcome measures; non-motor symptoms; and genetics. Based on the literature, we encourage rethinking of the selection process for DBS in PD, which should move toward a broad clinical and instrumental assessment of non-motor symptoms, quantitative measurement of gait, posture, and balance, and in-depth genotypic and phenotypic characterization.

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

BackgroundMeasuring 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.MethodsCYP 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.ResultsEighty-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.ConclusionThe 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.

Report from the International Dermatology Outcome Measures Initiative.

The International Dermatology Outcome Measures is a nonprofit organization dedicated to developing evidence-based, patient-centered outcome measures for dermatologic conditions. At the 2018 Alopecia Areata Research Summit, Dr Gottlieb, President of the International Dermatology Outcome Measures, presented an overview of their work in psoriasis, hidradenitis suppurativa, acne, and eczema and discussed the potential areas of mutual interest with the National Alopecia Areata Foundation. Herein, we present a summary of the topics discussed.

Implementation of Mobile Health Technologies in Clinical Trials of Movement Disorders: Underutilized Potential.

Mobile health technologies (mHealth) are patient-worn or portable devices aimed at increasing the granularity and relevance of clinical measurements. The implementation of mHealth has the potential to decrease sample size, duration, and cost of clinical trials. We performed a review of the ClinicalTrials.gov database using a standardized approach to identify adoption in and usefulness of mHealth in movement disorders interventional clinical trials. Trial phase, geographical area, availability of data captured, constructs of interest, and outcome priority were collected. Eligible trials underwent quality appraisal using an ad hoc 5-point checklist to assess mHealth feasibility, acceptability, correlation with patient-centered outcome measures, and clinical meaningfulness. A total of 29% (n = 54/184) registered trials were using mHealth, mainly in Parkinson's disease and essential tremor (59.3% and 27.8%). In most cases, mHealth were used in phase 2 trials (83.3%) as secondary outcome measures (59.3%). Only five phase 3 trials, representing 9.3% of the total, used mHealth (1 as primary outcome measure, 3 as secondary, and 1 as tertiary). Only 3.7% (n = 2/54) of all trials used mHealth for measuring both motor and non-motor symptoms, and 23.1% (n = 12/52) used mHealth for unsupervised, ecologic outcomes. Our findings suggest that mHealth remain underutilized and largely relegated to phase 2 trials for secondary or tertiary outcome measures. Efforts toward greater alignment of mHealth with patient-centered outcomes and development of a universal, common-language platform to synchronize data from one or more devices will assist future efforts toward the integration of mHealth into clinical trials.

Assessment of patient-centered outcomes (PROs) in inflammatory bowel disease (IBD): a multicenter survey preceding a cross-disciplinary (functional) consensus

BackgroundWith a shift in the healthcare paradigm towards a more patient-centered approach, data on inflammatory bowel disease (IBD) needs to be further explored. This study aimed to determine patient perspectives on the effect of IBD and features of patients with lower satisfaction level and compare patient and physician perception of IBD-related Quality of Care (QoC).MethodsA previously developed pre-standardised set of questions regarding patient-centered outcome (PRO) measures for IBD, comprising 36 items, was administered in five centers, and a concomitant questionnaire for specialised physicians was adapted and administered.ResultsOverall, 1005 patients with IBD met the inclusion criteria. Sixty-five questionnaires were administered to specialised physicians. Both patients and physicians perceived the IBD-related QoC as being satisfactory. Furthermore, this study revealed areas of shortcomings where it comes to patient perceptions. Female sex and the presence of negatively impacting disease characteristics (presence of significant pain or discomfort, lack of energy, feeling fatigued most of the time, experiencing anxiety or depression in the last 2 weeks) were associated with lower satisfaction levels.ConclusionsOur findings can be used in establishing strategies aimed at improving patient QoC and defining strategic priorities. These data can aid in improving the communication of the pressing needs of IBD patients, to both the public payers and health authorities.

Exercise Training Effects on the Relationship of Physical Function and Health-Related Quality of Life Among Older Heart Failure Patients With Preserved Ejection Fraction.

Although exercise training (ET) has been shown to improve both physical function and health-related quality of life (HRQOL) in older patients with heart failure and preserved ejection fraction (HFpEF), the relationship between changes in these important patient-centered outcome measures has not been adequately investigated. Patients (n = 116) with HFpEF (from 2 previous randomized controlled trials) were assigned to either 16 wk of endurance ET or attention control (CON). The ET in both trials consisted of ≤ 60 min of moderate-intensity endurance ET 3 time/wk. Peak exercise oxygen uptake (V˙o2peak) and other exercise capacity measures were obtained from a cardiopulmonary exercise test on an electronically braked cycle ergometer and 6-min walk test (6MWT). HRQOL was assessed using the Minnesota Living with Heart Failure (MLHF) Questionnaire and the 36-item Short Form Health Survey (SF-36). Compared with CON, the ET group demonstrated significant improvement in measures of physical function (V˙o2peak and 6MWT) at 16 wk of follow-up. There were no significant differences observed between the groups for MLHF scores, but the ET group showed significant improvements on the SF-36. There were no significant correlations between change in any of the physical function and HRQOL measures in the ET group. While endurance ET improved both physical function and some domains of HRQOL, the lack of significant correlations between changes in these measures suggests the effects of ET on physical function and HRQOL are largely independent of one another. Since these measures assess important and unique patient-centered outcomes in HFpEF patients, both physical function and HRQOL should be assessed in exercise-based programs and clinical trials.

Report of the Skin Research Workgroups from the GRAPPA 2019 Annual Meeting.

The International Dermatology Outcome Measures (IDEOM) initiative is a nonprofit organization dedicated to enhancing clinical care and research in dermatology by developing evidence-based, patient-centered outcome measures. At the 2019 annual meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), the IDEOM psoriasis working group presented an overview of its selected deliverables and discussed its efforts to agree on meaningful, valid, and feasible outcome measures for quality measurement in psoriasis. The psoriatic arthritis (PsA) workgroup focused on the measurement of PsA symptoms in psoriasis clinical trials, and the measurement of nonspecific musculoskeletal symptoms among patients with psoriasis in psoriasis longitudinal clinical trials and cohort studies.

Evaluation of Risk-Adjusted Home Time After Acute Myocardial Infarction as a Novel Hospital-Level Performance Metric for Medicare Beneficiaries.

The utility of 30-day risk-standardized readmission rate (RSRR) as a hospital performance metric has been a matter of debate. Home time is a patient-centered outcome measure that accounts for rehospitalization, mortality, and postdischarge care. We aim to characterize risk-adjusted 30-day home time in patients with acute myocardial infarction (AMI) as a hospital-level performance metric and to evaluate associations with 30-day RSRR, 30-day risk-standardized mortality rate (RSMR), and 1-year RSMR. The study included 984 612 patients with AMI hospitalization across 2379 hospitals between 2009 and 2015 derived from 100% Medicare claims data. Home time was defined as the number of days alive and spent outside of a hospital, skilled nursing facility, or intermediate-/long-term acute care facility 30 days after discharge. Correlations between hospital-level risk-adjusted 30-day home time and 30-day RSRR, 30-day RSMR, and 1-year RSMR were estimated with the Pearson correlation. Reclassification in hospital performance using 30-day home time versus 30-day RSRR and 30-day RSMR was also evaluated. Median hospital-level risk-adjusted 30-day home time was 24.0 days (range, 15.3-29.0 days). Hospitals with higher home time were more commonly academic centers, had available cardiac surgery and rehabilitation services, and had higher AMI volume and percutaneous coronary intervention use during the AMI hospitalization. Of the mean 30-day home time days lost, 58% were to intermediate-/long-term care or skilled nursing facility stays (4.7 days), 30% to death (2.5 days), and 12% to readmission (1.0 days). Hospital-level risk-adjusted 30-day home time was inversely correlated with 30-day RSMR (r=-0.22, P<0.0001) and 30-day RSRR (r=-0.25, P<0.0001). Patients admitted to hospitals with higher risk-adjusted 30-day home time had lower 30-day readmission (quartile 1 versus 4, 21% versus 17%), 30-day mortality rate (5% versus 3%), and 1-year mortality rate (18% versus 12%). Furthermore, 30-day home time reclassified hospital performance status in ≈30% of hospitals versus 30-day RSRR and 30-day RSMR. Thirty-day home time for patients with AMI can be assessed as a hospital-level performance metric with the use of Medicare claims data. It varies across hospitals, is associated with postdischarge readmission and mortality outcomes, and meaningfully reclassifies hospital performance compared with the 30-day RSRR and 30-day RSMR metrics.

PMU81 WHAT IS THE VALUE OF DIGITAL THERAPEUTICS? A REVIEW OF HEALTH ECONOMIC EVIDENCE

Digital therapeutics (DTx), a subset of digital health, deliver software-generated therapeutic interventions directly to patients to prevent, manage, or treat a disease. While the role of DTx in mainstream healthcare is evolving, there is little information on whether such technologies efficiently use resources or improve patient outcomes. To better understand the methodological challenges in assessing the value of DTx, we reviewed the current landscape of health economic studies on DTx. A targeted review of literature published between January 2011 and December 2019 was conducted using prespecified search terms in multiple scientific literature databases. Studies that employed economic methods in evaluation of DTx were included, such as cost-effectiveness, cost-consequence, or cost-benefit analysis. For each included study, information on costs, quality-adjusted life years (QALYs), perspective, time horizon and method of economic evaluation was assessed. Our initial search identified 243 studies, and 235 were excluded based on a review of their titles or abstracts. Among the economic studies meeting the pre-defined inclusion criteria (n=8), only 2 studies were conducted in the United States. The most common medical condition studied was cardiovascular diseases (n=3), followed by physical activity (n=2), asthma (n=1), diabetes (n=1), and stress urinary incontinence (n=1). Notably, 5 of the 8 studies concluded DTx was cost-effective. This review found that time horizons used in these economic studies were relatively short in duration (1-3 years). Lastly, these analyses did not capture the QALYs or costs associated with program attrition, any harmful results, or the impact of DTx on indirect measures such as employment or caregiver burden. Although clinical evidence for DTx is growing, this study demonstrates health economic evidence associated with DTx is inadequate. Future research should prioritize generation of real-world evidence and facilitate improved measurement of patient-centered and value-based outcomes in economic evaluations of DTx.

Documentation of self-reported patient outcomes in trauma surgery : Clinical benefits of patient reported outcome measures

The future progressive aspiration of evidence-based medicine makes it necessary to carry out a comprehensive documentation of functional treatment after trauma surgery. Especially the subjective, patient-centered satisfaction with treatment results will be the focus of attention. Patient centered outcome measures (PROM) are potent instruments to capture the patients' functional status validly and in acost and time-efficient manner. Additionally, modern technical options have the potential to evaluate specific joint function even better. Parameters, such as range of motion can soon be measured by the patient using the widely spread smartphone technology.

Patient reported outcome measures in public reporting : Objectification of quality information via physicians and hospitals

Patient reported outcome measures (PROM) are considered agood method of measuring the results of treatment outcomes with the aim of improving the functional, cognitive and mental state of patients and the quality of life during and after treatment. The publication of these results serves the patient's interest in finding the best provider for a treatment. The existing interest of many service providers for the integration of electronic PROM into everyday clinical practice is often faced by barriers due to financial, personnel and technical factors. This must be eliminated in the interest of patient information in order to facilitate the rapid introduction of this patient-centered treatment outcome measurement into as many hospitals and specialist departments as possible.

Healthcare professionals' perceptions of challenges to chronic pain management.

To explore healthcare professionals' perceptions of challenges to chronic pain management. Qualitative interview study. Semistructured telephone interviews with healthcare professionals involved in chronic pain management and thematic analysis of transcriptions. Respondents (N = 16) described multiple challenges to chronic pain management: Management occurs in a complex care context complicated by the multidimensional, subjective nature of pain. A lack of systematic approaches fosters variation in care, and clinicians lack time and resources to manage pain holistically. Efforts to date have focused primarily on opioid reduction versus strategic approaches to manage chronic pain across the system. Comprehensive approaches to identify and manage chronic pain are nascent and, typically, narrowly focused on reducing opioid use. Respondents, however, recognized the importance of effective systematic management across inpatient and outpatient settings. These findings underscore the need to consider chronic pain as a chronic condition that warrants coordinated approaches to care such as standardized assessments; consistent, patient-centered outcome measures; and multimodal treatments that target both physical relief and underlying psychosocial factors.

Selection criteria to palliative care implementation in advanced heart failure

Early palliative care (PC) integration in advanced and end-stage heart failure has shown to improve quality of life and spiritual well-being and to reduce physical symptoms. Barriers to implementation exist: perception that PC is opposite to "life-prolonging" therapies or is involved only in cancer disease and in end of life, prognostic difficulties in advanced heart failure, comorbidities, discrepancy between patient-reported symptom burden and objective measures of disease severity. This is why it is necessary to focus on patient and caregivers "needs" instead of exclusively numerical-objective measures, in order to emphasize clinical but also psychological, assistential and spiritual elements contributing to quality of life. The most appropriate instruments are "patient-reported outcome measures" (PROMs) or, better, "patient-centered outcome measures" (PCOMs), such as the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF), Integrated Palliative Outcome Scale (IPOS), NECPAL and Supportive and Palliative Care Indicators Tool (SPICT). Finally, it is important to recognize triggers to initiate a PC approach (important changes in disease trajectory, difficult or refractory symptoms, frequent defibrillator shocks or transplant/mechanical support prevision, functional capacity decline, severe comorbidities, communication needs also for advanced care planning).

PROM-ED: Development and Testing of a Patient-Reported Outcome Measure for Emergency Department Patients Who Are Discharged Home

Common outcomes of care valued by emergency department (ED) patients who are not hospitalized have been characterized, but no measurement instrument has been developed to date. We developed and validated a patient-reported outcome measure for use with adult ED patients who are discharged home (PROM-ED). In previous research, 4 main outcomes of importance to ED patients were defined: symptom relief, understanding, reassurance, and having a plan. We developed a bank of potential questions (phase 1) that were first tested for suitability through cognitive debriefing with patients (phase 2). Revised questions were then tested quantitatively with a large panel of participants who had recently received ED care (phase 3). Informed by these results, a panel of experts used a modified Delphi process to make decisions on item reduction. The resulting instrument (PROM-ED 1.0) was then evaluated for its measurement properties (structural validity, hypothesis testing, and reliability). Sixty-seven questions divided among 4 scales (1 for each outcome domain) were assembled. In accordance with cognitive debriefing with 8 patients (phase 2), 15 questions were modified and 13 removed. Testing of these questions with 444 participants (phase 3) identified problematic floor or ceiling effects (n=10), excessive correlations between items (n=11), and low item-total correlations (n=7). The expert panel (22 participants, phase 4) made decisions using this information on the exclusion of items, resulting in 22 questions across 4 scales that together constitute the PROM-ED 1.0. Testing provided good evidence of validity and test-retest reliability (n=200). The PROM-ED enables the measurement of patient-centered outcomes of importance to patients receiving care in the ED who are not hospitalized. These data could have important applications in research and care improvement.

Rehabilitación del Atrapamiento Femoroacetabular tras Artroscopia: revisión sistemática y propuesta de programa contextualizado

La artroscopia de cadera para el atrapamiento femoroacetabular es un procedimiento reciente. Se ha estudiado la etiología, diagnóstico y tratamiento artroscópico del atrapamiento femoroacetabular, no así la rehabilitación postoperatoria. Hemos examinado los estudios de la última década sobre estructura y contenidos de los programas de rehabilitación del atrapamiento femoroacetabular tras artroscopia. Se realizó una revisión sistemática de acuerdo a la declaración PRISMA, las bases de datos seleccionadas fueron Scopus, Web of Science, PubMed, Dialnet y Cochrane Library Plus, evaluándose la calidad metodológica de los trabajos mediante la escala de Coleman modificada. Se analizaron los programas de los estudios incluidos, hallándose fases, contenidos y criterios comunes, mostrando escasa evidencia y heterogeneidad metodológica, que no permite estandarizar los protocolos de rehabilitación. En conclusión, con toda la información se ha diseñado un protocolo integral dirigido al paciente para ser aplicado y medir sus resultados en el contexto socioeconómico de la población española.

Delivering patient-centered care in Parkinson's disease: Challenges and consensus from an international panel

An international panel of movement disorders specialists explored the views and perceptions of people with Parkinson's disease (PD) about their condition and its treatment, including the potential mismatch between the clinician's view of the patient's condition and their own view of what aspects of the disease most affect their daily lives. The initiative was focused on Asian countries, so participants comprised experts in the management of PD from key centers in Asia, with additional insight provided by European and the North American movement disorders experts. Analysis of peer-reviewed publications on patient perceptions of PD and the factors that they consider important to their wellbeing identified several contributing factors to the mismatch of views, including gaps in knowledge of PD and its treatment, an understanding of the clinical heterogeneity of PD, and the importance of a multidisciplinary approach to patient care. The faculty proposed options to bridge these gaps to ensure that PD patients receive the personalized treatment they need to achieve the best possible outcomes. It was considered essential to improve patient knowledge about PD and its treatment, as well as increasing the awareness of clinicians of PD heterogeneity in presentation and treatment response. A multidisciplinary and shared-care approach to PD was needed alongside the use of patient-centered outcome measures in clinical trials and clinical practice to better capture the patient experience and improve the delivery of individualized therapy.

Contemporary strategies to improve clinical trial design for critical care research: insights from the First Critical Care Clinical Trialists Workshop.

BackgroundConducting research in critically-ill patient populations is challenging, and most randomized trials of critically-ill patients have not achieved pre-specified statistical thresholds to conclude that the intervention being investigated was beneficial.MethodsIn 2019, a diverse group of patient representatives, regulators from the USA and European Union, federal grant managers, industry representatives, clinical trialists, epidemiologists, and clinicians convened the First Critical Care Clinical Trialists (3CT) Workshop to discuss challenges and opportunities in conducting and assessing critical care trials. Herein, we present the advantages and disadvantages of available methodologies for clinical trial design, conduct, and analysis, and a series of recommendations to potentially improve future trials in critical care.ConclusionThe 3CT Workshop participants identified opportunities to improve critical care trials using strategies to optimize sample size calculations, account for patient and disease heterogeneity, increase the efficiency of trial conduct, maximize the use of trial data, and to refine and standardize the collection of patient-centered and patient-informed outcome measures beyond mortality.Electronic supplementary materialThe online version of this article (10.1007/s00134-020-05934-6) contains supplementary material, which is available to authorized users.

Pediatric perioperative outcomes: Protocol for a systematic literature review and identification of a core outcome set for infants, children, and young people requiring anesthesia and surgery.

Clinical outcomes are measurable changes in health, function, or quality of life that are important for evaluating the quality of care and comparing the efficacy of interventions. However, clinical outcomes and related measurement tools need to be well-defined, relevant, and valid. In adults, Core Outcome Measures in Effectiveness Trials (COMET) methodology has been used to develop core outcome sets for perioperative care. Systematic literature reviews identified standardized endpoints (StEP) and valid measurement tools, and consensus across a broader range of relevant stakeholders was achieved via a Delphi process to establish Core Outcome Measures in Perioperative and Anaesthetic Care (COMPAC). Core outcome sets for pediatric perioperative care cannot be directly extrapolated from adult data. The type and weighting of endpoints within particular domains can be influenced by age-dependent differences in the indications for and/or nature of surgery and medical comorbidities, and the validity and utility of many measurement tools vary significantly with developmental stage and age. The involvement of parents/carers is essential as they frequently act as surrogate responders for preverbal and developmentally delayed children, parental response may influence child outcome, and parental and/or child ranking of outcomes may differ from those of health professionals. Here, we describe the formation of the international Pediatric Perioperative Outcomes Group, which aims to identify and create validated, broadly applicable, patient-centered outcome measures for infants, children, and young people. Methodologies parallel that of the StEP and COMPAC projects, and systematic literature searches have been performed within agreed age-dependent subpopulations to identify reported outcomes and measurement tools. This represents the first steps for developing core outcome sets for pediatric perioperative care.