Condition-specific Patient-reported Outcome Measures Research Articles

Can prediction models for hospital readmission be improved by incorporating patient-reported outcome measures? A systematic review and narrative synthesis.

To investigate the roles, challenges, and implications of using patient-reported outcome measures (PROMs) in predicting the risk of hospital readmissions. We systematically searched four bibliometric databases for peer-reviewed studies published in English between 1 January 2000 and 15 June 2023 and used validated PROMs to predict readmission risks for adult populations. Reported studies were analysed and narratively synthesised in accordance with the CHARMS and PRISMA guidelines. Of the 2858 abstracts reviewed, 23 studies met predefined eligibility criteria, representing diverse geographic regions and medical specialties. Among those, 19 identified the positive contributions of PROMs in predicting readmission risks. Seven studies utilised generic PROMs exclusively, eleven used generic and condition-specific PROMs, while 5 focussed solely on condition-specific PROMs. Logistic regression was the most used modelling approach, with 13 studies aiming at predicting 30-day all-cause readmission risks. The c-statistic, ranging from 0.54 to 0.84, was reported in 22/23 studies as a measure of model discrimination. Nine studies reported model calibration in addition to c-statistic. Thirteen studies detailed their approaches to dealing with missing data. Our study highlights the potential of PROMs to enhance predictive accuracy in readmission models, while acknowledging the diversity in data collection methods, readmission definitions, and model evaluation approaches. Recognizing that PROMs serve various purposes beyond readmission reduction, our study supports routine data collection and strategic integration of PROMs in healthcare practices to improve patient outcomes. To facilitate comparative analysis and broaden the use of PROMs in the prediction framework, it is imperative to consider the methodological aspects involved.

Psychometric analysis of the modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) in a prospective multicentre study

BackgroundLong COVID (LC) is a novel multisystem clinical syndrome affecting millions of individuals worldwide. The modified COVID-19 Yorkshire Rehabilitation Scale (C19-YRSm) is a condition-specific patient-reported outcome measure designed for assessment...

Measuring needs-based quality of life and self-perceived health inequity in patients with multimorbidity: investigating psychometric measurement properties of the MultiMorbidity Questionnaire (MMQ) using primarily Rasch models

BackgroundMultimorbidity is a burden for the individual and to the healthcare sector worldwide, leading to a rising number of intervention studies towards this patient group. To measure a possible effect of such interventions, an adequate patient-reported outcome measure (PROM) is essential. The aim of this study was to assess the draft MultiMorbidity Questionnaire (MMQ), a PROM measuring needs-based quality of life and self-perceived inequity in patients with multimorbidity, for its psychometric properties and to adjust it accordingly to create a content- and construct valid measure.MethodsThe draft MMQ was sent to 1198 eligible respondents with multimorbidity. Modern test theory and classical test theory were used to analyse data. Dimensionality of the suggested domains and invariance of the items were assessed through item analysis, examining the fit to a psychometric model.ResultsThe psychometric analyses were based on responses from 390 patients with multimorbidity. In the MMQ1, measuring needs-based QoL, evidence of six unidimensional scales was confirmed: physical ability (6 items), worries (6 items), limitations in everyday life (10 items), my social life (6 items), self-image (6 items), and personal finances (3 items). The psychometric analyses of the MMQ2 outlined four unidimensional scales measuring the feeling of Self-perceived inequity in patients with multimorbidity: experiences of being stigmatised (4–5 items), Experiences of insufficient understanding of the burden of disease (3 items), Experiences of not being seen and heard (4 items), Experience of powerlessness (5 items). These scales are relevant for patients’ with multimorbidity encounters with (1) their general pratitioner, (2) staff at their general practitioner’s surgery, (3) healthcare professionals, (4) staff at the local authorities and (5) friends, family, and others.ConclusionThe MMQ, a QoL measure for patients living with multimorbidity has been validated: the MMQ1 is a condition-specific PROM with adequate psychometric properties designed to measure needs-based QoL. The MMQ2 measuring Self-perceived inequity, has also been found to possess adequate measurement properties; however due to the risk of type 2 error a revalidation of MMQ2 is suggested.

Further psychometric validation and test-retest reproducibility of the WOUND-Q.

WOUND-Q is a condition-specific patient-reported outcome measure developed for all types of chronic wounds, located anywhere on the body. To establish reliability and validity of a patient-reported outcome measure, multiple pieces of evidence are required. The purpose of this study was to examine the measurement properties of 9 of the 13 WOUND-Q scales and perform a test-retest reproducibility study in an international sample. In August 2022, we invited members of an international online community (Prolific.com) with any type of chronic wound to complete a survey containing the WOUND-Q scales, the Wound-QoL and EQ-5D. A test-retest survey was performed 7 days after the first survey. It was possible to examine the reliability and validity of eight of the nine WOUND-Q scales by Rasch Measurement Theory (RMT). To examine test-retest reproducibility intraclass correlation coefficients (ICCs), the standard error of the measurement and the smallest detectable change were calculated. In total, 421 patients from 22 different countries with 11 different types of chronic wounds took part in this study. Our analyses provided further evidence of the reliability and validity of the scales measuring wound characteristics (assessment, drainage, smell), health-related quality of life (life impact, psychological, sleep, social) and wound treatment (dressing).

Arabic translation, cultural adaptation, and validation of the Bristol Impact of Hypermobility questionnaire

BackgroundThe Bristol Impact of Hypermobility questionnaire (BIoH) is the first condition-specific patient reported outcome measure for people with hypermobility-related conditions. The BIoH original version is in English, which limits its use for patients who speak other languages. The study aimed to translate and culturally adapt the BIoH into Arabic and determine its concurrent validity, reliability, internal consistency and smallest detectable change.MethodsForward-backward translation and cross-sectional designs were used. The Ethics Committee of Kuwait Ministry of Health approved the study. Spearman correlation coefficient, intraclass correlation coefficient (ICC), and Cronbach’s α were used for statistical analysis. Patients with hypermobility spectrum disorders (HSD) were included, diagnosed using the 2017 classification framework.Results55 HSD patients were included, aged 26.0 (18.0) years old; median (IQR), and 85.5% were women. The BIoH showed very good concurrent validity when correlated with the SF-12 total and physical component scores; r = -0.743 and − 0.740, respectively (p < 0.05). Good correlation was identified between the BIoH and the SF-12 mental component score; r = -0.496 (p < 0.05). The BIoH demonstrated excellent test-retest reliability; ICC = 0.934 (0.749–0.983 95% CI) (p < 0.05), and high internal consistency (Cronbach’s α = 0.933). The smallest detectable change was 30.90 points, representing 19.8% of the mean baseline score.ConclusionsThe study successfully translated the BIoH into Arabic and demonstrated high psychometric properties. The translated score can help Arabic patients with HSD in their clinical evaluation process. Future research needs to determine the responsiveness of the Arabic version and translate the BIoH to other languages.

Danish Linguistic Validation and Cultural Adaptation of the LIMB-Q Kids.

(1) Background: Lower Limb deformities include many conditions where pain and physical limitations negatively impact the health-related quality of life (HRQL) of children. The ideal way to assess this impact is by using a Patient Reported Outcome Measure (PROM). Such a condition-specific PROM is under development, called LIMB-Q Kids. This study aimed to perform a translation and cultural adaption (TCA) of the LIMB-Q Kids for use in Danish-speaking children. (2) Methods: TCA guidelines established by the World Health Organization (WHO) and the Professional Society for Health Economics and Outcomes Research (ISPOR) were followed. This process consisted of two independent forward translations, a reconciliation meeting, a backward translation with an assessment, an expert meeting, cognitive interviews with patients, editing based on the interviews, and proofreading. (3) Results: The TCA process contributed to the Danish version of LIMB-Q Kids. The reconciliation meeting resulted in a reconciled Danish version. The revision of the backward translation led to 16 corrections, and after the expert panel meeting, 26 changes were made. Twelve cognitive interviews led to nine changes, which were validated by two further interviews. Proofreading led to no further comments. (4) Conclusions: The TCA process led to a linguistically validated and culturally adapted Danish version of LIMB-Q Kids. This version is being used in the international field test study.

Patient-reported outcomes and patient-reported outcome measures in liver transplantation: a scoping review.

Generic or condition-specific Patient-reported Outcome Measures (PROMs) are used to measure physical, mental, and social aspects of health to promote patient-centered care. This scoping review aims to identify and summarize generic and condition-specific PRO domains and PROMs that have been assessed and used in liver transplant (LT) candidates and recipients. We searched Medline, Embase, Cochrane Database of Systematic Reviews and Register of Trials, PsychInfo, and CINAHL from inception to 08/26/2020. Included studies addressed a PRO or PROM in LT candidates or recipients. After screening, 341 studies yielded 189 unique PRO domains. Mental health domains (depression, anxiety, and guilt) were most frequently assessed, followed by domains of physical and social health. Fifty-one generic and three condition-specific unique PROMs were identified, with only 13% (n = 45) of studies including condition-specific tools. The most frequent PROMs were the SF-36, Nottingham Health Profile, Hospital Anxiety and Depression Scale, followed by the Liver Disease Quality of Life (LDQoL). Very few studies used transplant-specific PROMs, which may partly be related to the scarcity of LT-specific instruments. We will use these results in future qualitative research to identify PROs and PROMs to build an electronic PROM toolkit to facilitate patient-centered LT care.

Condition-Specific Oral Health-Related Quality of Life (CS-OHRQoL) measures in Orthodontics- A Narrative Review

Outcomes pertaining to orthodontics can be either ‘disease’ outcome or ‘treatment’ outcome. The scales used for outcome assessment are usually the same for both and can be classified as generic or condition-specific. Generic scales are used in general for a variety of clinical conditions in dentistry, whereas condition-specific scales are used for specific problems like malocclusion. Due to the peculiar nature of orthodontic problems that do not fall into the definition of a disease, generic scales are of little use and condition-specific ones are recommended. The present article aims to provide a summary of the available condition-specific patient-reported outcome measures in orthodontics and perform a critical analysis of the same.

Design of a treatment satisfaction measure for patients undergoing varicose vein treatment: Venous Treatment Satisfaction Questionnaire (VenousTSQ).

Established condition-specific patient-reported outcome measures for varicose veins are limited to the measurement of health status and function. A treatment satisfaction measure is needed to understand patient satisfaction with different treatment options. The aim of this study was to design a Venous Treatment Satisfaction Questionnaire (VenousTSQ) that would be ready for large-scale data collection and psychometric evaluation. Relevant items were selected from the -TSQ Item Library and new items were designed where necessary. A draft VenousTSQ was prepared using the existing AneurysmTSQ as a template. Fifteen interviews were conducted from 4 days to 16 months after the procedure. The interviews were designed to elicit important sources of satisfaction or dissatisfaction before completion of draft questionnaires. The VenousTSQ drafts were modified between sets of interviews until no further changes were required. The final VenousTSQ consists of two questionnaires: VenousTSQ early (VenousTSQe) and VenousTSQ status (VenousTSQs). Items that need be asked only once are in the VenousTSQe, whereas those that can usefully be asked more than once are in the VenousTSQs. Of the 16 unique items forming the VenousTSQ, 12 were from the -TSQ Item Library. Only 1 of these 12 required significant modification. The VenousTSQ represents a condition-specific psychological outcome measure for varicose veins, enabling patient satisfaction or dissatisfaction with such treatments to be measured. Large-scale data collection is under way to establish optimal scoring, quantitative validity, and reliability of the VenousTSQ.

Producing a preference-based quality of LIFE measure to quantify the impact of HYPOGLYCAEMIA on people living with diabetes: A mixed-methods research protocol.

Assessment of patient-reported outcome measures (PROMs), including quality of life (QoL), is essential in diabetes research and care. However, a recent review concluded that current hypoglycaemia-specific PROMs have limited evidence of validity, reliability and responsiveness for assessing the impact of hypoglycaemia on QoL in people living with diabetes. None of the PROMs identified could be used directly to inform the cost-effectiveness of treatments and interventions. There is a need for a new hypoglycaemia-specific QoL PROM, which can be used directly to inform economic evaluations. This project has three aims: (a) To develop draft PROM content for measuring the impact of hypoglycaemia on QoL in adults with diabetes. (b) To refine the draft content using cognitive debriefing interviews and psychometrics. This will result in a condition-specific PROM that can be used to quantify the impact of hypoglycaemia upon QoL. (c) To generate a preference-based measure (PBM) that will enable utility values to be calculated for economic evaluation. A mixed-methods, three-stage design is used: (a) Qualitative interviews will inform the draft PROM content. (b) Cognitive debriefing interview data will be used to refine the draft PROM content. The PROM will be administered in a large-scale survey to enable psychometric validation. Final item selection for the PROM will be informed by psychometric performance, translatability assessment and input from stakeholder groups. (c) A classification system will be generated, comprising a reduced number of items from the PROM. A valuation survey will be conducted to derive a value set for the PBM.

Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study).

Healthcare systems face rising demand and unsustainable cost pressures. In response, health policymakers are adopting Value-Based Health Care (VBHC), targeting available resources to achieve the best possible patient outcomes at the lowest possible cost and actively disinvesting in care of low-value. This requires the evaluation of longitudinal clinical and patient reported outcome measures (PROMs) at an individual-level and population-scale, which can create significant data challenges. Achieving this through routinely collected electronic health record (EHR) data-linkage could facilitate the implementation of VBHC without an unacceptable data burden on patients or health systems and release time for higher-value activities. Our study tested the ability to report an international, patient-centred outcome dataset (ICHOM-IBD) using only anonymised individual-level population-scale linked electronic health record (EHR) data sources, including clinical and patient-reported outcomes, in a cohort of patients with moderate-to-severe ulcerative colitis (UC), receiving biopharmaceutical therapies ("biologics") in a single, publicly funded, healthcare system. We identified a cohort of 17,632 patients with UC in Wales and a cohort from two Health Boards of 447 patients with UC receiving biologics. 112 of these patients had completed 866 condition-specific PROMs during their biologics treatment. 44 out of 59 (74.6%) items in the ICHOM-IBD could be derived from routinely collected data of which a primary care source was essential for eight items and desirable for 21. We demonstrated that it is possible to report most but not all the ICHOM-IBD outcomes using routinely collected data from multiple sources without additional system burden, potentially supporting Value-Based Health Care implementation with population data science. As digital collection of PROMs and use of condition-specific registries grow, greater utility of this approach can be anticipated. We have identified that the availability of longitudinal primary and secondary care data linked with PROMs is essential for this to be possible.

How is pain associated with pelvic mesh implants measured? Refinement of the construct and a scoping review of current assessment tools

BackgroundRecommendations for the management of pain related to pelvic mesh implants are still under development. One limitation that has impeded progress in this area is that mesh-related pain has not been consistently defined or measured. Here, we reviewed the ways in which pain associated with pelvic mesh implants has been measured, and mapped the ways in which these existing measures capture the construct.MethodsFirst, we reviewed existing accounts of the pain associated with pelvic mesh implants to develop a multifaceted construct definition, which includes aspects related to pain intensity, timing, body location, phenomenological qualities, impact/interference with daily living, and patient expectations and beliefs. Next, we reviewed the ways that the construct has been measured in the extant literature.ResultsWithin 333 eligible studies, 28 different assessments of pain associated with pelvic mesh were identified, and 61% of studies reported using more than one measurement tool. Questionnaire measures included measures designed to assess urological and/or pelvic symptoms, generic measures and unvalidated measures. We did not identify any validated questionnaire measures designed to assess pain associated with pelvic mesh implants. The phenomenological, location, and expectation/belief components of the construct were not captured well by the identified questionnaire measures, and there is no evidence that any of the identified measures have appropriate psychometric properties for the assessment of pain related to pelvic mesh implants.ConclusionsWe recommend further qualitative research regarding women’s experiences of pelvic mesh-related pain assessment, and the development of a condition-specific patient reported outcome measure.

Patient-Reported Outcome Measures of Quality of Life in People Affected by Diabetic Foot: A Psychometric Systematic Review

This psychometric systematic review aimed to identify the most suitable patient-reported outcome measures (PROMs) of quality of life (QoL) in people affected by diabetic foot. We performed a literature search in MEDLINE (PubMed), CINAHL (EBSCOhost), and PsycINFO (EBSCOhost) databases from inception to February 1, 2022. We also searched gray literature databases. Eligible studies were full-text reports developing a QoL condition-specific PROM or assessing one or more of its measurement properties in people affected by diabetic foot. We assessed the methodological quality of included studies independently using the "Consensus-Based Standards for the Selection of Health Measurement Instruments Risk of Bias" checklist. The measurement properties were evaluated using specific criteria. We graded the quality of the evidence using a "Grading of Recommendations Assessment, Development and Evaluation" approach modified by Consensus-Based Standards for the Selection of Health Measurement Instruments. Forty-three reports (46 studies) providing information on the measurement properties of 10 different PROMs were included. We did not identify any instruments that could be recommended for use. We identified 2 PROMs that were not recommended for use and 8 that were potentially recommended but would require further investigation. Of these 8 PROMs, 4 had better evidence for content validity. Available PROMs to measure QoL in people affected by diabetic foot have limited evidence for their measurement properties. There is no fully suitable PROM. Pending further evidence, 4 PROMs could potentially be recommended for use.

Long-Term Complications and Patient-Reported Outcomes After Alloplastic Breast Reconstruction.

The most widely used method for breast reconstruction in Taiwan is alloplastic breast reconstruction, and traditionally, it can be categorized into immediate or delayed, single-stage or 2-stage procedures. We evaluated clinical outcomes and analyzed patients' self-reported satisfaction and quality of life after alloplastic breast reconstruction based on a previous preliminary study. The patients who underwent primary alloplastic breast reconstruction after mastectomy were recruited in 2006 to 2020 at a single institute in Taiwan. The assessment of clinical outcomes was conducted by retrospective chart review and risk analysis. The patients also completed the BREAST-Q, a condition-specific patient-reported outcome measure, at least 6 months after treatment. A total of 237 patients with 247 reconstructed breasts were enrolled in this study. The demographics showed that 205 (83%) were reconstructed using a 2-stage tissue expander-based procedure and 42 (17%) were 1-stage direct-to-implant reconstructions. The mean follow-up time was 79.5 months. The clinical assessment revealed that the overall complication rate was 34%, with infection being the most common (21 patients; 8%). According to risk analysis, smoking (odds ratio, 7.626; 95% confidence interval, 1.56-37.30; P = 0.012), and nipple-sparing mastectomy (odds ratio, 3.281; 95% confidence interval, 1.54-6.99; P = 0.002) were significant risk factors for overall complications. The questionnaire response rate was 38% (94 of 247), at least 6 months after treatment. The total mean score was 69.78. At a single institute in Taiwan from 2006 to 2020, alloplastic breast reconstruction, either single- or 2-stage, have acceptable complication rate and good postoperative satisfaction based on patient-reported outcomes. Both patient- and surgery-related factors presented as significant risk factors. Precise patient selection and comprehensive discussion between the patient and physician may play the important role to achieve optimal aesthetic outcomes.

Psychometric Validation of the CLEFT-Q Patient Reported Outcome Measure: A Prospective Study to Examine Cross-Sectional Construct Validity.

CLEFT-Q is a condition-specific patient-reported outcome measure (PROM) for patients with cleft lip and/or palate (CL/P). The aim of this study was to examine the cross-sectional construct validity of the CLEFT-Q scales. Construct validity was assessed through a prospective study that tested hypotheses regarding correlations of scores with other PROMs that measure related constructs. Seven cleft centres in Canada, the USA, and UK were involved. Patients were aged eight to 29 years with CL/P. Before undergoing rhinoplasty, orthognathic, cleft lip scar revision, and alveolar bone graft, participants were asked to complete the following PROMs: CLEFT-Q (9 scales), Child Oral Health Impact Profile (socio-emotional subscale) and Cleft Hearing Appearance and Speech Questionnaire (features 1 subscale). The correlation coefficients examining the relationship between the scales were the main outcome measures. Correlations (Spearman) were calculated and interpreted as follows: <0.3 weak, 0.30 to 0.50 moderate, ≥0.50 strong. Participants (n = 177) were mostly male (61%) and aged between eight and 11 years (42%). Overall, 38 of 52 (73%) hypotheses tested were supported. More specifically, 20 of 26 (77%) hypotheses about correlations between the appearance scales were supported, two of three (67%) hypotheses about correlations between the health-related quality of life scales were supported, and 16 of 23 (70%) hypotheses about correlations between the appearance and health-related quality of life scales were supported. Cross-sectional construct validity of the CLEFT-Q scales adds further evidence of the psychometric properties of this instrument.

Comparison of upper extremity lymphedema after sentinel lymph node biopsy and axillary lymph node dissection: patient-reported outcomes in 3044 patients.

A limited number of studies have examined the impact of type of axillary lymph node surgery on breast cancer-related lymphedema (BCRL) from the patient's perspective. The objective of this study was to assess the impact of sentinel lymph node dissection (SLND) and axillary lymph node dissection (ALND) on the health-related quality of life (HRQOL) in women diagnosed with BCRL using a condition specific patient-reported outcome measure (PROM), the LYMPH-Q upper extremity (UE) module. Adult women diagnosed with BCRL were identified from the Danish National Health Data Authority database for the period 2008 to 2020 and were sent an online REDCap survey with the LYMPH-Q UE module. Information pertaining to axillary surgery was obtained from an online pathology repository. Multivariable linear regression was used to examine differences in the SLND and ALND groups on the LYMPH-Q UE scale scores. Three thousand and fourty four women with BCRL were included in the analysis. The mean follow-up duration was 8.6 ± 5.15years (range, 0-36years). The majority of participants underwent ALND (n = 2805, 92.1%) and only 7.9% (n = 239) received SLND. The mean number of lymph nodes removed in the SLND group was 2.2 ± 1.4. No statistically significant difference was found in the two groups on the LYMPH-Q UE scale scores. There is no difference in women with upper extremity lymphedema after SLND or ALND on the LYMPH-Q UE module scales measuring arm symptoms, function, distress, and appearance.

Searching for the Holy Grail: A Systematic Review of Health-Related Quality of Life Measures for Active Youth.

To identify the most suitable existing generic and condition-specific health-related quality of life (HRQoL) patient-reported outcome measures (PROMs) for active youth with and without a musculoskeletal injury, based on measurement properties, interpretability, and feasibility. Systematic review of clinimetrics. We searched MEDLINE, Embase, CINAHL, SPORTDiscus, PsycINFO, and Scopus from inception to April 30, 2020. Records with original data describing the evaluation of a PROM or PROM subscale in active youth (15-24 years old) with or without a musculoskeletal injury were included. Non-English studies and those including individuals with a cognitive, developmental, or systemic condition were excluded. This review was conducted according to the COSMIN user manual for systematic reviews of PROMs and the PRISMA guidelines. The COSMIN user manual guided our measurement property evaluation and interpretability and feasibility description. Of 6931 potential records, 21 studies were included. Eleven generic and 7 condition-specific PROMs were identified. No PROM received a final COSMIN recommendation of "A" because all lacked sufficient content validity. The 8-item Disablement in the Physically Active scale-mental summary component Short Form (DPA-MSC SF-8), Quality of Life Survey, and Functional Arm Scale for Throwers (FAST) were the most suitable existing PROMs, given their high-quality evidence for sufficient structural validity and internal consistency. No definitively robust PROM for measuring generic or condition-specific HRQoL of active youth was identified. Until one exists, we recommend the DPA-MSC SF-8, the Quality of Life Survey, or the FAST and applying mixed methods to best characterize the HRQoL of active youth. J Orthop Sports Phys Ther 2021;51(10):478-491. doi:10.2519/jospt.2021.10412.

Correlation of the I-HaND Scale with Other Musculoskeletal Patient-Reported Outcome Measurement Scores

Background Experiments can determine if nerve-specific patient-reported outcome measures (PROMs) can outperform regional or condition-specific PROMs. We compared a nerve-specific PROM of the upper extremity, the Impact of Hand Nerve Disorders (I-HaND) scale, to other validated measures quantifying activity intolerance and sought to assess interquestionnaire correlations and factors independently associated with activity intolerance and pain intensity.Methods One hundred and thirty patients with any upper extremity nerve-related condition completed measures of demographics, psychological limitations, quality of life, activity intolerance, and pain intensity. To quantify activity intolerance, we used the I-HaND, Patient-Reported Outcomes Measurement Information System Physical Function Upper Extremity, and Disabilities of the Arm, Shoulder and Hand short form.Results Strong interquestionnaire correlations were found between the activity intolerance measures (r between 0.70 and 0.91). Multivariable analysis revealed that greater activity intolerance and greater pain intensity correlated most with greater symptoms of depression on all scales, with symptoms of depression accounting for 53 to 84% of the variability in the PROMs.Conclusion There is no clear advantage of the nerve-specific I-HaND over shorter, regional PROMs, perhaps because they are all so closely tied to mental health. Unless an advantage relating to responsiveness to treatment is demonstrated, we support using a brief arm-specific PROM for all upper extremity conditions.Level of Evidence Level II; Prognostic.

A Comparison of Nerve-Specific, Condition-Specific, and Upper Extremity-Specific Patient-Reported Outcome Measures in Patients With Carpal and Cubital Tunnel Syndrome

Arm-, region-, tissue-, and condition-specific patient-reported outcome measures (PROMs) are available to address idiopathic mononeuropathy. This study compared PROMs with varying specificities in patients with idiopathic neuropathy of the upper extremity with respect to correlations with each another, sources of variation in scores, and floor and ceiling effects. One hundred fifty patients (130 with carpal tunnel syndrome, 30 with cubital tunnel syndrome, and 10 with both conditions) completed a nerve-specific PROM (Impact of Hand Nerve Disorders), a condition-specific PROM (Boston Carpal Tunnel Syndrome Questionnaire and/or Patient-Rated Ulnar Nerve Evaluation), and an upper extremity-specific PROM (Patient-Reported Outcomes Measurement Information System Physical Function Upper Extremity 7). We also gathered demographic and condition-related data (side, electrodiagnostic studies present, muscle atrophy, static loss of sensibility), and patients completed questionnaires measuring self-efficacy, kinesiophobia, and symptoms of depression. Correlation of the PROMs with each another and factors accounting for their variation were assessed, as well as the number of items to complete, time to complete, and floor and ceiling effects. Pearson correlations between PROMs were moderate to strong (0.56-0.90). Self-reported symptoms of depression were best able to account for the variations in symptom intensity and activity intolerance on all PROMs (adjusted R2 between 0.09 and 0.31). The Impact of Hand Nerve Disorders is a long questionnaire and took the most time to complete. All instruments had comparable floor effects; Patient-Reported Outcomes Measurement Information System Physical Function Upper Extremity had a ceiling of effect of 16%. This study adds to the evidence that specific and general PROMs correlate with each another, perhaps in part through their correlation with mental health. Based on this line of evidence and pending testing of potentially greater responsiveness in specific settings, we prefer to use a single simple, brief, and general PROM to quantify symptom intensity and activity intolerance for both routine patient care and research. Prognostic II.

Patient Reported Outcomes Measures in Advanced Heart Failure Patients

<h3>Purpose</h3> Patients are the best source of information about how they feel and how care affects them. Patient-reported outcome measures (PROMs) are standardized, validated questionnaires completed by patients to measure their perception of their well-being and health status. <b>Aim</b>: To create a cost-effective, valid, and sensitive PROMs data capture process for patients with Advanced Heart Failure (AHF) to understand to what extent a Heart Transplant (HT) affects their quality of life <h3>Methods</h3> A prospective data collection model has been designed for AHF patients eligible for HT based on the Outcomes Management and Evaluation (OME) system developed by Cleveland Clinic. <b>Two types of data will be collected: 1) Patient condition-specific PROMs; 2) OME for HT and potential Bridge to Transplant Therapies (BTT).</b> Patient condition-specific PROMs will be measured using the Kansas City Cardiomyopathy Questionnaire and social determinants of health (e.g., smoking habits and drug abuse). The OME data for BTT include: A)Pre-BTT details (e.g., UNOS status),B)Post-BTT details (e.g., post-transplant mechanical support). The OME data for HT include:A)Pre-transplant details (e.g., UNOS status),B)Donor characteristics (e.g., ischemic trigger greater than 4 hours),C)Post-transplant details (e.g., post-transplant mechanical support). The process for collecting PROMs is divided into 5 phases (see fig). <h3>Results</h3> Data will start to be collected approximately in November 2020 until June 2021, aiming to have the first results analyzed by July 2021 <h3>Conclusion</h3> This is one of the first PROMs processes implemented in an AHF program to the best of our knowledge. Our goal is to imbed PROMs into our workflow and create an umbrella of PROMs across the entire Heart and Vascular Institute to measure the quality of care from our patients' perspective to improve the clinical decision-making process.