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Applying the Patient-Reported Outcomes Measurement Information System to Assess Upper Extremity Function among Children with Congenital Hand Differences.

ABSTRACT: Few studies have evaluated self-assessment tools among children with congenital hand differences. The authors compared three upper extremity disability instruments with the Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Upper Extremity Item Bank.Thirty-three children (aged 6 to 17 years) with congenital hand differences completed the Pediatric Outcomes Data Collection Instrument; the Michigan Hand Outcomes Questionnaire; the Disabilities of the Arm, Shoulder, and Hand questionnaire; and the PROMIS Upper Extremity short form and computerized adaptive test. Hand function was also assessed, and construct validity and feasibility were examined.PROMIS demonstrated good construct validity. Short form and computerized adaptive test were highly correlated with Disabilities of the Arm, Shoulder, and Hand questionnaire scores (r = 0.80, p < 0.001) and Pediatric Outcomes Data Collection Instrument domains (r = 0.70, p < 0.001). PROMIS was moderately correlated with the Michigan Hand Outcomes Questionnaire (r = 0.40, p < 0.05). PROMIS scores also correlated with grip (r = 0.60, p < 0.001) and pinch strength (r = 0.50, p < 0.001). Compared with the Pediatric Outcomes Data Collection Instrument and the Disabilities of the Arm, Shoulder, and Hand and Michigan Hand Outcomes questionnaires, PROMIS required the least time to complete with fewer children requiring assistance.The Patient-Reported Outcomes Measurement Information System is highly correlated with both functional assessment and self-reported function among children with congenital hand differences.

SUBMITTER: Waljee JF

PROVIDER: S-EPMC4798231 | biostudies-literature | 2015 Aug

REPOSITORIES: biostudies-literature

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Applying the Patient-Reported Outcomes Measurement Information System to Assess Upper Extremity Function among Children with Congenital Hand Differences.

Waljee Jennifer F JF Carlozzi Noelle N Franzblau Lauren E LE Zhong Lin L Chung Kevin C KC

Plastic and reconstructive surgery 20150801 2

<h4>Background</h4>Few studies have evaluated self-assessment tools among children with congenital hand differences. The authors compared three upper extremity disability instruments with the Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Upper Extremity Item Bank.<h4>Methods</h4>Thirty-three children (aged 6 to 17 years) with congenital hand differences completed the Pediatric Outcomes Data Collection Instrument; the Michigan Hand Outcomes Questionnaire; the Disabil ...[more]

PMID: 26218394

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Project description:PurposeStatistical literacy is the ability of a patient to apply basic statistical concepts to their health care. Understanding statistics is a critical component of shared decision making. The purpose of this investigation was to define levels of statistical literacy in an upper-extremity (UE) patient population. We aimed to determine if patient demographics would be associated with statistical literacy.MethodsAn electronic survey was administered to a consecutive series of UE patients at a single institution. We recorded baseline demographics, Single Assessment Numeric Evaluation scores, the Berlin Numeracy Test (BNT), and General Health Numeracy Test. We also included a surgical risk question, which asked: "Approximately 3% of patients who get carpal tunnel surgery develop an infection. If 100 patients get this surgery, how many would you expect to develop an infection?" A covariate-controlled adjusted odds ratio reflecting the association between each statistical literacy outcome measure and patient characteristics was reported.ResultsA total 254 surveys were administered, 148 of which were completed and included. Fifty percent of respondents had a high-school education or less. For the BNT, 78% scored in the bottom quartile, and 52% incorrectly answered all questions. For the General Health Numeracy Test, 34% answered 0 or 1/6 questions correctly. For the surgical risk question, 24% of respondents answered incorrectly. Respondents who had a college or graduate degree had 2.62 times greater odds (95% confidence interval, 1.09-6.32) of achieving a BNT score in a higher quartile than patients who did not have a college or graduate degree.ConclusionsOverall levels of statistical literacy are low for UE patients.Clinical relevanceWhen engaging in management discussions and shared decision making, UE surgeons should assume low levels of statistical literacy. Consideration of alternative formats, such as frequencies, video-based materials, and pictographs, may be warranted when discussing outcomes and risks of surgical procedures.

Project description:Purpose To assess the preoperative and postoperative performance of the Patient-Reported Outcomes Measurement Information System Upper Extremity (PROMIS-UE, version 2.0) outcome score in comparison to the American Shoulder and Elbow Surgeons (ASES) and Western Ontario Rotator Cuff Index (WORC) instruments in patients undergoing rotator cuff repair. Methods This prospective longitudinal study included 91 patients undergoing rotator cuff repair. Patients completed the PROMIS-UE, ASES, and WORC instruments preoperatively and postoperatively at 2 weeks, 6 weeks, 3 months, and 12 months. The Pearson correlation coefficient (r) between these tools was calculated at each time point. Correlations were graded as excellent (>0.7), excellent-good (0.61-0.7), good (0.4-0.6), or poor (<0.4). Responsiveness to change was assessed using the effect size and the standardized response mean. Floor and ceiling effects for each instrument were also assessed. Results The PROMIS-UE instrument showed good to excellent correlation with the legacy instruments at all time points. There were variations in the measured effect sizes of the various instruments, with the PROMIS-UE instrument showing responsiveness to change at 3 and 12 months but the ASES and WORC instruments showing responsiveness at 6 weeks, 3 months, and 12 months. Both PROMIS-UE and ASES scores displayed ceiling effects at 12 months. Conclusions The PROMIS-UE instrument shows excellent correlation with the ASES instrument and a rotator cuff–specific outcome instrument—the WORC instrument—preoperatively and at 1 year after arthroscopic rotator cuff repair. Variations in the measured effect sizes at different postoperative time points and high ceiling effects of the PROMIS-UE instrument at the 1-year time point may limit its utility in the early postoperative phase and at long-term follow-up after rotator cuff repair. Clinical Relevance The performance of the PROMIS-UE outcome measure after arthroscopic rotator cuff repair was investigated.

Project description:BackgroundThe National Institute of Health's Patient-Reported Outcomes Measurement Information System (PROMIS) uses computerised-adaptive testing to reduce survey burden and improve sensitivity. PROMIS is being used across medical and surgical disciplines but has not been studied in orthopaedic oncology.Questions/purposesThe aim of the study was to compare PROMIS measures with upper extremity (UE) and lower extremity (LE) Toronto Extremity Salvage Score (TESS) by assessing the following: (1) responder burden, (2) correlation between scores and (3) floor/ceiling effects.Patients and methodsThis cross-sectional trial analysed all 97 adult patients treated surgically for a bone or soft tissue tumour at a tertiary institution between November 2015 and March 2016. TESS (UE or LE) and PROMIS (Physical Function, Pain Interference and Depression) surveys were administered preoperatively. Pearson correlations between each PROMIS domain and TESS were calculated, as were floor/ceiling effects of each outcome measure.Results(1) Completion of three PROMIS questionnaires required a mean total of 16.8 (+/- 5.8 standard deviation) questions, compared with 31 and 32 questions for the LE and UE TESS questionnaires, respectively. (2) The PROMIS Physical Function scores demonstrated a strong positive correlation with the LE TESS (r = 0.84; 95% confidence interval [CI], 0.72-0.91; p < 0.001) and moderate positive correlation with the UE TESS (r = 0.64; 95% CI, 0.34-0.83; p = 0.055). The PROMIS Depression scores demonstrated a weak negative correlation with both the LE TESS (r = -0.38; 95% CI, -0.61 to -0.10; p = 0.010) and with UE TESS (r = -0.38; 95% CI, -0.67 to -0.01; p = 0.055). The PROMIS Pain Interference scores demonstrated a strong negative correlation with the LE TESS (r = -0.71; 95% CI, -0.83 to -0.52; p < 0.001) and a moderate negative correlation with the UE TESS (r = -0.62; 95% CI, -0.81 to -0.30; p = 0.001). (3) The UE TESS had a range of scores from 16 to 100 with a 27% ceiling effect and no floor effect, and the LE TESS had a range from 10 to 98 with no floor or ceiling effect. There was no floor or ceiling effect for any PROMIS measures.ConclusionsIn an orthopaedic oncology population, the PROMIS Physical Function and Pain Interference scores correlate with the TESS and have the benefit of reduced survey burden and ceiling effect. The PROMIS Depression scores may provide additional information regarding patient outcomes not captured by the TESS.Level of evidenceLevel III.The translational potential of this articlePatient reported outcome measures asses patients' symptoms, function and health-related quality of life and are designed to capture more clinical information than can be gathered by objective medial testing alone. As reimbursements and the understanding of patient outcomes are becoming tied to performance on PROMIS measures, it is an important step to establish how PROMIS measures correlate and compare to traditional legacy measures.

Project description:BackgroundMinimal clinically important difference (MCID) estimates are useful for gauging clinical relevance when interpreting changes or differences in patient-reported outcomes scores. These values are lacking in the setting of elbow trauma. Our primary purpose was to estimate the MCID of the Patient-Reported Outcomes Measurement Information System (PROMIS) physical function (PF) computer adaptive test (CAT), the PROMIS upper extremity (UE) CAT, and the QuickDASH using an anchor-based approach for patients recovering from elbow trauma and related surgeries. Secondarily, we aimed to estimate the MCID using the 1/2 standard deviation method.Materials & methodsAdult patients undergoing treatment for isolated elbow injuries between July 2014 and April 2020 were identified at a single tertiary academic medical center. Outcomes, including the PROMIS PF CAT v1.2/2.0, PROMIS UE CAT v1.2, and QuickDASH, were collected via a tablet computer. For inclusion, baseline (6 months before injury up to 11 days postoperatively or after injury) and follow-up (11 to 150 days postoperative or after injury) PF or UE CAT scores were required, as well as a response to an anchor question querying improvement in physical function. The MCID was calculated using (1) an anchor-based approach using the difference in mean score change between anchor groups reporting "No change" and "Slightly Improved/Improved" and (2) the 1/2 standard deviation method.ResultsOf the 146 included patients, the mean age was 46 ± 18 years and 67 (46%) were women. Most patients (129 of 146 or 88%) were recovering from surgery, and the remaining 12% were recovering from nonoperatively managed fractures and/or dislocations. The mean follow-up was 157 ± 192 days. Scores for each instrument improved significantly between baseline and follow-up. Anchor-based MCID values were calculated as follows: 5.7, 4.6, and 5.3 for the PROMIS PF CAT, PROMIS UE CAT, and QuickDASH, respectively. MCID values estimated using the 1/2 standard deviation method were 4.3, 4.8, and 11.7 for the PROMIS PF CAT, PROMIS UE CAT, and QuickDASH, respectively.ConclusionsIn the setting of elbow trauma, we propose MCID ranges of 4.3 to 5.7 for the PROMIS PF CAT, 4.6 to 4.8 for the PROMIS UE CAT, and 5.3 to 11.7 for the QuickDASH. These values will provide a framework for clinical relevance when interpreting clinical outcomes studies, or powering clinical trials, for populations recovering from trauma.

Project description:BackgroundPatient- and parent-reported outcome measures (PROMs) are increasingly used to evaluate the effectiveness of surgery for congenital hand differences (CHDs). Knowledge of an existing outcome measure's ability to assess self-reported health, including psychosocial aspects, can inform the future development and application of PROMs for CHD. However, the extent to which measures used among children with CHD align with common, accepted metrics of self-reported disability remains unexplored.Questions/purposesWe reviewed studies that used PROMs to evaluate surgery for CHD to determine (1) the number of World Health Organization-International Classification of Functioning, Disability and Health (WHO-ICF) domains covered by existing PROMs; (2) the proportion of studies that used PROMs specifically validated among children with CHD; and (3) the proportion of PROMs that targets patients and/or parents.MethodsWe performed a comprehensive review of the literature through a bibliographic search of MEDLINE®, PubMed, and EMBASE from January 1966 to December 2014 to identify articles related to patient outcomes and surgery for CHD. We evaluated the 42 studies that used PROMs to identify the number and type of WHO-ICF domains captured by existing PROMs for CHD and the proportion of studies that use PROMs validated for use among children with CHD. The most common instruments used to measure patient- and parent-reported outcomes after reconstruction for CHD included the Prosthetic Upper Extremity Functional Index (PUFI), Disabilities of the Arm, Shoulder, and Hand questionnaire, Childhood Experience Questionnaire, and Pediatric Quality of Life Inventory.ResultsCurrent PROMs that have been used for CHD covered a mean of 1.3 WHO-ICF domains (SD ± 1.3). Only the Child Behavior Checklist and the Piers-Harris Children's Self-Concept Scale captured all ICF domains (body functions and structures, activity, participation, and environmental factors). The PUFI, the only PROM validated specifically for children with congenital longitudinal and transverse deficiency, was used in only four of 42 studies. Only 13 of the 42 studies assessed patient-reported outcomes, whereas five assessed both patient- and parent-reported outcomes.ConclusionsThe PROMs used to assess patients after CHD surgery do not evaluate all WHO-ICF domains (ie, body structure, body function, environmental factors, and activity and participation) and generally are not validated for children with CHD. Given the psychological and sociological aspects of CHD illness, a PROM that encompasses all components of the biopsychosocial model of illness and validated in children with CHD is desirable.Level of evidenceLevel III, therapeutic study.

Project description:BackgroundPatient-Reported Outcomes provide an opportunity for patients to establish dialogue with pharmaceutical or biotechnology companies about their health conditions without interpretation by a clinician or anyone else. However, Patient-Reported Outcomes that can be widely applicable for use in patient-focused drug development or clinical trial designs are not yet validated for all diseases. The aim of this study report was to provide supportive evidence of the construct and content validity of selected Patient-Reported Outcomes Measurement Information System (PROMIS®) questionnaires compared with other disease-relevant clinical outcome measures, including the 6-Minute Walk Distance, forced vital capacity, and Manual Muscle Test, in late-onset Pompe disease and to provide supportive evidence that the selected PROMIS measures are relevant and important to these patients.MethodsThirty patients with late-onset Pompe disease completed five PROMIS questionnaires that were chosen based on patient and provider feedback, along with discussion with key opinion leaders who are experts in Pompe disease. The Amicus Pompe Patient Advisory Board also provided patient experience feedback using the PROMIS questionnaires. Clinical outcome measures (6-Minute Walk Distance, forced vital capacity, and Manual Muscle Test) were collected at the Duke University Pompe Disease Clinical Research Program during a single visit.ResultsThe Patient Advisory Board rated the questionnaires as representative of an unmet need. Correlation data demonstrated moderate to strong correlations of PROMIS questionnaires with the specified clinical outcome measures (6-Minute Walk Distance, forced vital capacity, and Manual Muscle Test). These data supported the construct and content validity of the PROMIS questionnaires because they confirmed the motor signs and symptoms of functional disability observed in patients with Pompe disease.ConclusionsThe correlations indicate that the clinical outcome measures assess important concepts related to patient-reported experiences. The Patient Advisory Board findings suggest that the selected PROMIS questionnaires are meaningful and address important concepts to patients with Pompe disease. The data were collected from a small number of patients at a single time point; further studies are needed with additional PROMIS questionnaires, which should include measures of motor function and health-related quality of life, in a larger number of patients followed up longitudinally.

Dataset Information

Applying the Patient-Reported Outcomes Measurement Information System to Assess Upper Extremity Function among Children with Congenital Hand Differences.

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Applying the Patient-Reported Outcomes Measurement Information System to Assess Upper Extremity Function among Children with Congenital Hand Differences.

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