Inventory of Patient-Reported Outcome Measures Used in the Non-Operative Care of Scoliosis: A Scoping Review.
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SUBMITTER: Parent EC
PROVIDER: S-EPMC9954663 | biostudies-literature | 2023 Jan
REPOSITORIES: biostudies-literature
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Inventory of Patient-Reported Outcome Measures Used in the Non-Operative Care of Scoliosis: A Scoping Review.
Parent Eric C EC Vaclavik Matthew M Bourgoin Cody C Hebert Courtney C Bouwmeester Megan M Cheslock Sarah S Collins Rebecca R Potgieter Stefan S Coles Mark M Schreiber Sanja S Donzelli Sabrina S Warner Camille C
Children (Basel, Switzerland) 20230129 2
It is unclear which patient-reported outcome measures (PROMs) can assess non-operative care for scoliosis. Most existing tools aim to assess the effects of surgery. This scoping review aimed to inventory the PROMs used to assess non-operative scoliosis treatment by population and languages. We searched Medline (OVID) as per COSMIN guidelines. Studies were included if patients were diagnosed with idiopathic scoliosis or adult degenerative scoliosis and used PROMs. Studies without quantitative dat ...[more]
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Project description:BackgroundRetinoblastoma is a childhood retinal cancer with lifelong consequences such as vision loss and increased risk of second cancer. Patient-reported outcome measures (PROMs) are instruments that measure outcomes related to health directly reported by patients. The purpose of this study was to determine the scope, characteristics and quality of PROMs used in retinoblastoma and related fields of pediatric ophthalmology and pediatric oncology.MethodsDatabases MEDLINE and Embase were searched for studies in the English language that reported on PROMs used in retinoblastoma, pediatric oncology, or pediatric ophthalmology; grey literature and studies reporting on developmental PROM phases were excluded. PROMs were grouped by the construct measured and domains assessed, and classified as condition-specific or generic. A subsequent search was then conducted in MEDLINE and Embase for studies assessing measurement properties of the identified PROMs. PROMs with associated studies were assessed for their methodologic quality using the COnsensus-based standard for the Selection of health Measurement INstruments (COSMIN) strategy.ResultsAmong 110 eligible studies uncovered by the database searches, 143 PROMs were identified: one retinoblastoma-specific, 56 ophthalmology- and 86 oncology-related. The most common construct measured was 'health-related quality of life' and the most common domain assessed was emotional well-being. Of the 143 PROMs, 100 had associated validation studies; the one retinoblastoma-specific PROM was not validated. Quality assessment revealed 34/100 PROMs received a score of sufficient quality in both subcategories of 'overall content validity'; 3/100 received a score of sufficient quality in both subcategories of 'internal structure'; 0/100 received a score of sufficient quality in all three subcategories of 'remaining measurement properties'. The Patient-Reported Outcome Measure Information System (PROMIS) Pediatric Profile-25 was the highest-scoring PROM identified, meeting COSMIN standards for 2/3 measurement property categories (and 5/7 subcategories). Eleven additional PROMs were identified which had sufficient scores in 1/3 measurement property categories (and 5/7 subcategories).ConclusionThe study identified several PROMs from the pediatric ophthalmology and pediatric oncology literature that could be relevant to the retinoblastoma population, but many have limits to their validation. Future development of a retinoblastoma-specific PROM, performed in partnership with retinoblastoma patients to support optimal content validity, could first focus on the selection and definition of the optimal construct to measure, followed potentially by adaptation and further validation of the relevant PROMs with strong methodologic quality identified in this study.
| S-EPMC7415058 | biostudies-literature
Project description:BackgroundPatient-reported outcomes are essential to understanding success in plastic surgery procedures, many that aim to improve quality of life. Patient-reported outcome measures (PROMs) should be written at or below the sixth-grade reading level recommended by the American Medical Association. This study aimed to evaluate the readability of plastic surgery PROMs.MethodsWe conducted a literature review to identify validated, commonly used PROMs in plastic surgery. We extracted PROMs' text and instructions and analyzed readability using different approaches that estimate the grade level required to understand. Our primary outcome was the Simple Measure of Gobbledygook (SMOG) index, which detects word complexity and expects 100% comprehension at the grade level rating assigned. We also included the Flesch-Kincaid grade level, Coleman-Liau index, and automated readability index.ResultsForty-three PROMs met the inclusion criteria. The mean SMOG index was 8.2 (SD = 1.3), indicating an eighth-grade reading level. Mean reading grade levels measured by the Flesch-Kincaid grade level, Coleman-Liau index, and automated readability index ranged from third to sixth grade, although these may underestimate readability difficulties. Only 6 (14%) PROMs had a SMOG index at or below the sixth-grade level. PROM instructions had significantly higher reading levels than the questions/responses for all readability indexes (P < 0.01).ConclusionsPROMs used in plastic surgery, including the instructions, exceed the reading level recommended by the American Medical Association. This may limit comprehension and accurate completion and compromise validity and reliability. PROMs should be written and designed to be accessible to patients of all literacy levels.
| S-EPMC11661722 | biostudies-literature
Project description:BackgroundStandardised generic patient-reported outcome measures (PROMs) which measure health status are often unresponsive to change in primary care. Alternative formats, which have been used to increase responsiveness, include individualised PROMs (in which respondents specify the outcomes of interest in their own words) and transitional PROMs (in which respondents directly rate change over a period). The objective of this study was to test qualitatively, through cognitive interviews, two PROMs, one using each respective format.MethodsThe individualised PROM selected was the Measure Yourself Medical Outcomes Profile (MYMOP). The transitional PROM was the Patient Enablement Instrument (PEI). Twenty patients who had recently attended the GP were interviewed while completing the questionnaires. Interview data was analysed using a modification of Tourangeau's model of cognitive processing: comprehension, response, recall and face validity.ResultsPatients found the PEI simple to complete, but for some it lacked face validity. The transitional scale was sometimes confused with a status scale and was problematic in situations when the relevant GP appointment was part of a longer episode of care. Some patients reported a high enablement score despite verbally reporting low enablement but high regard for their GP, which suggested hypothesis-guessing. The interpretation of the PEI items was inconsistent between patients. MYMOP was more difficult for patients to complete, but had greater face validity than the PEI. The scale used was open to response-shift: some patients suggested they would recalibrate their definition of the scale endpoints as their illness and expectations changed.ConclusionsThe study provides information for both users of PEI/MYMOP and developers of individualised and transitional questionnaires. Users should heed the recommendation that MYMOP should be interview-administered, and this is likely to apply to other individualised scales. The PEI is open to hypothesis-guessing and may lack face-validity for a longer episode of care (e.g. in patients with chronic conditions). Developers should be cognisant that transitional scales can be inconsistently completed: some patients forget during completion that they are measuring change from baseline. Although generic questionnaires require the content to be more general than do disease-specific questionnaires, developers should avoid questions which allow broad and varied interpretations.
| S-EPMC6161379 | biostudies-literature
Project description:BackgroundPatient-reported outcome measures (PROMs) measure patients' perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM development OBJECTIVE: This article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time.Search strategyLiterature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register.Inclusion criteriaStudies were included if they described a new PROM development.Data extractionBasic information and information regarding patient involvement in development phases was recorded.Main resultsA total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time.ConclusionsAlthough patient involvement in PROM development is essential to develop valid patient-centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.
| S-EPMC5217930 | biostudies-literature
Project description:BackgroundMeasuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC).MethodsArksey and O'Malley's 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published.ResultsOf 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions.ConclusionThe identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC.Trial registrationReview registration: ( https://osf.io/yfch2/ ) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).
| S-EPMC10557323 | biostudies-literature
Project description:BackgroundPatient-reported outcome measures (PROMs) are standardized and validated self-administered questionnaires that assess whether healthcare interventions and practices improve patients' health and quality of life. PROMs are commonly implemented in children and youth mental health services, as they increasingly emphasize patient-centered care. The objective of this study was to identify and describe the PROMs that are currently in use with children and youth living with mental health conditions (MHCs).MethodsThree databases (MEDLINE, EMBASE, and PsycINFO) were systematically searched that used PROMs with children and youth < 18 years of age living with at least one diagnosed MHC. All methods were noted according to Preferred Reporting Items for Systematic reviews and Meta-Analysis. Four independent reviewers extracted data, which included study characteristics (country, year), setting, the type of MHC under investigation, how the PROMs were used, type of respondent, number of items, domain descriptors, and the psychometric properties.ResultsOf the 5004 articles returned by the electronic search, 34 full-texts were included in this review. This review identified both generic and disease-specific PROMs, and of the 28 measures identified, 13 were generic, two were generic preference-based, and 13 were disease-specific.ConclusionThis review shows there is a diverse array of PROMs used in children and youth living with MHCs. Integrating PROMs into the routine clinical care of youth living with MHCs could improve the mental health of youth. Further research on how relevant these PROMs are children and youth with mental health conditions will help establish more uniformity in the use of PROMs for this population.
| S-EPMC9928989 | biostudies-literature
Project description:BackgroundPrimary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients' to-date. The aim of the systematic review was to: (a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC.MethodsA systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist.ResultsThirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n = 15) and Chronic liver disease questionnaire (CLDQ) (n = 6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study.ConclusionA wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.
| S-EPMC6034220 | biostudies-literature
Project description:Patient Reported Outcome Measures (PROM) evoke measurements that allow capturing patients' perspectives on their condition. In endometriosis care, physicians' understanding of the effect of the disease and the treatment on patients is often poor. The use of PROMs in endometriosis clinical practice can facilitate patient-provider communication and the implementation of patient-centered care, improve patients' quality of life, as well as provide a tool for patients' self-management of the disease. Today, PROMs are extensively used in research and clinical trials, however they are barely used in clinical practice. The development of digital tools facilitating capturing PROMs can contribute to their use by physicians in routine endometriosis care. However, all PROMs are not adapted to be used in routine care in the context of endometriosis. The objective of this study was to present a catalogue of available PROMs for routine endometriosis care and evaluate them according to selected criteria. To do so, we explored the different PROMs currently in the literature. Consequently, 48 PROM were identified as tools used to evaluate various dimensions of the impact of endometriosis on patients. The selected PROMs were evaluated for their potential to be used as a standard in clinical practice in endometriosis. The selected catalogue of PROMs is the starting point for the integration of digital tools to capture PROMs and the development of patient-centered dashboards to be used by patients and clinicians in endometriosis care and self-management to improve care processes, patient satisfaction, quality of life, and outcomes.
| S-EPMC8585017 | biostudies-literature
Project description:BackgroundThe algorithmic patient preference predictor (PPP) has been proposed to aid in decision making for incapacitated patients in the absence of advanced directives. Ethical and legal challenges aside, multiple practical barriers exist for building a personalized PPP. Here, we examine previous work using machine learning to predict patient reported outcome measures (PROMs) for capacitated patients undergoing diverse procedures, therapies, and life events. Demonstrating robust performance in predicting PROMs for capacitated patients could suggest opportunities for developing a model tailored to incapacitated ones.MethodsWe performed a scoping review of PubMed, Embase, and Scopus using the PRISMA-ScR guidelines to capture studies using machine learning to predict PROMs following a medical event alongside qualitative studies exploring a theoretical PPP.ResultsSixty-eight studies used machine learning to evaluate PROMs; an additional 20 studies focused on a theoretical PPP. For PROMs, orthopedic surgeries (n = 33) and spinal surgeries (n = 12) were the most common medical event. Studies used demographic (n = 30), pre-event PROMs (n = 52), comorbidities (n = 29), social determinants of health (n = 30), and intraoperative variables (n = 124) as predictors. Thirty-four different PROMs were used as the target outcome. Evaluation metrics varied by task, but performance was overall poor to moderate for the best reported scores. In models that used feature importance, pre-event PROMs were the most predictive of post-event PROMs. Fairness assessments were rare (n = 6). These findings reinforce the necessity of the integrating patient values and preferences, beyond demographic factors, to improve the development of personalized PPP models for incapacitated patients.ConclusionThe primary objective of a PPP is to estimate patient-reported quality of life following an intervention. Use of machine learning to predict PROMs for capacitated patients introduces challenges and opportunities for building a personalized PPP for incapacitated patients without advanced directives.
| S-EPMC11573790 | biostudies-literature
Project description:ObjectiveThis scoping review aims to characterize the current literature on electronic patient-reported outcome measures (ePROMs) in rheumatology and assess the feasibility and utility of ePROMs and mobile health technology in the management of rheumatic disease.IntroductionPatient-reported outcome measures (PROMs) are commonly used in rheumatology as they are important markers of disease activity and overall function, encourage shared decision-making, and are associated with high rates of patient satisfaction. With the widespread use of mobile devices, there is increasing interest in the use of mobile health technology to collect electronic PROMs (ePROM).Inclusion criteriaAll primary studies that involve the collection of ePROMs using mobile devices by individuals with a rheumatic disease were included. Articles were excluded if ePROMs were measured during clinic appointments.MethodsA scoping review was performed using Medline, Embase, PsycINFO, and CINAHL with index terms and key words related to "patient-reported outcome measures", "rheumatic diseases", and "mobile health technology".ResultsA total of 462 records were identified after duplicates were removed. Of the 70 studies selected for review, 43% were conference proceedings and 57% were journal articles, with the majority published in 2016 or later. Inflammatory arthritis was the most common rheumatic disease studied. Generic ePROMs were used over three times more often than disease-specific ePROMs. A total of 39 (56%) studies directly evaluated the feasibility of ePROMs in clinical practice, 19 (27%) were clinical trials that used ePROMs as study endpoints, 9 (13%) were focus groups or surveys on smartphone application development, and 3 (4%) did not fit into one defined category.ConclusionThe use of ePROMs in rheumatology is a growing area of research and shows significant utility in clinical practice, particularly in inflammatory arthritis. Further research is needed to better characterize the feasibility of ePROMs in rheumatology and their impact on patient outcomes.
| S-EPMC8297791 | biostudies-literature