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EXPLORING VARIABILITY IN WEANING PRACTICES FOR BRACE TREATMENT OF DEVELOPMENTAL DYSPLASIA OF THE HIP
IntroductionWeaning infants from brace treatment for developmental dysplasia of the hip (DDH) is a practice employed by many, but there is variability in how it is defined and implemented. Previous surveys demonstrated weaning is performed by 66% of POSNA members, 50% of EPOS members and 33% of BSCOS members. However, little is known about when weaning starts, what “weaning” entails, and how protocols differ.This study aims to explore these practices and help define the weaning process to inform a future randomised controlled trial (RCT) comparing weaning versus no weaning.MethodA survey generated using Googleforms was distributed to clinicians specialising in DDH. The survey asked respondents to define weaning, whether they follow a specific protocol, when they begin the weaning process, and how long it lasts. Additional questions explored what informs the decision to wean, when clinicians believe the brace can be fully removed, and the specifics of their weaning regimen.ResultsClinicians from around the globe participated. They commonly defined weaning as a gradual reduction in brace usage. Most clinicians followed departmental protocols that varied based on severity or classification. Opinions differed on when to initiate the brace removal process. Practices and weaning regimens demonstrated considerable variability. There was broad consensus supporting an RCT comparing weaning to non-weaning.ConclusionsThis survey underscores the discrepancies in practises related to the weaning of brace treatment. A well-designed RCT comparing weaning to non-weaning is essential to establish gold standard practices.
DEFINING DIAGNOSTIC THRESHOLDS FOR FEMORAL HEAD COVERAGE IN DEVELOPMENTAL DYSPLASIA OF THE HIP
IntroductionAlthough ultrasound is commonly used to diagnose developmental dysplasia of the hip (DDH), the femoral head coverage (FHC) parameters for ‘normal’, ‘dysplastic’ or ‘subluxed/dislocated’ hips remain poorly defined. This creates diagnostic confusion and impedes clear communication.MethodTwo routine hip screening datasets were used, containing 2032 paired alpha angle and FHC measurements from 1419 patients (age range 0.43-25.0 weeks, mean 7.83 weeks, 66.2% female). It included the following DDH severities (Graf1 971, G2 672, G3/4 389) and age groups (0-6 weeks 833, >6-12 875, >12-25 324). 1031/2032 (50.7%) retrospective scans were obtained in one hospital from 842 patients (age range 0.86-25.0 weeks, mean 9.24 weeks, 57.5% female) and underwent prospective re-measurement by expert clinicians. The remaining 1001 measurements from 577 patients (age range 0.43-22.42 weeks, mean 6.38 weeks, 80% female) were prospectively collected from four regional paediatric centres (including the UK Global Hip Dysplasia Registry). The temporal correlation between ultrasound methods and the 90th percentile for FHC in each Graf class was calculated.ResultsThe overall correlation (rho) between the methods in the datasets (combined/retrospective/prospective) was 0.73/0.79/0.75. By age groups in weeks (0-6/>6-12/>12-25), these values were 0.77/0.79/0.78, 0.68/0.78/0.71, 0.72/0.80/0.64, respectively. The 90th percentile value for FHC was 60% in Graf 2 and 35% in Graf 3/4.ConclusionsThere was a strong positive correlation between Graf alpha angle and FHC, which persisted across different age groups. In 9 out of 10 patients, FHC <35% would likely identify a subluxed/dislocated hip and >60% would be normal.
A FAMILY-CENTRED CORE OUTCOME SET FOR INFANTS UNDERGOING BRACE TREATMENT FOR DEVELOPMENTAL DYSPLASIA OF THE HIP
Introduction and ObjectiveBrace treatment is the cornerstone of managing developmental dysplasia of the hip (DDH) in infants. Despite widespread use, clinical equipoise and varied practices exist around key aspects of brace treatment, including timing, duration, and weaning. High-quality evidence from randomised controlled trials is urgently needed to establish gold-standard care. Importantly, brace wearing isn't a benign intervention; it has a significant impact on the family unit, which is often overlooked.This study aims to define a family centred core outcome set (COS) for infants undergoing brace treatment to facilitate consistent reporting for future high-quality researchMethodFamily-centred outcomes identified through literature review and scoping survey involving key stakeholders. Identified outcomes were rated for perceived importance in a two-stage modified Delphi process. Finally, a consensus meeting held to establish the final COS.ResultsLiterature review and scoping survey with 131 stakeholders thematically analysed to generate a list of 14 outcome domains. A two-stage Delphi process identified the most important outcomes followed by consensus meeting to agree the final COS.ConclusionsThe impact of brace treatment on the family is profound but seldom considered in trials. This COS can standardise reporting on the family's experience and potentially become part of a broader COS for DDH infants undergoing brace treatment. This addresses a critical gap in DDH research, incorporating the family's experience into outcome reporting. By developing a family-centred COS, future trials can more accurately assess the holistic impact of brace treatment, ultimately improving clinical practice and family-centred care.
COMMUNICATION WHEN PAEDIATRIC OSTEOMYELITIS IS SUSPECTED: QUALITATIVE STUDY OF PATIENT, FAMILY, AND HEALTH PROFESSIONAL PERSPECTIVES
AbstractAimsThis study aimed to identify the information and support needs of children and their families during diagnostic investigations for paediatric osteomyelitis.MethodsQualitative study involving semi-structured interviews with families who had experienced investigations for paediatric osteomyelitis and health professionals. Data analysis was informed by thematic analysis.ResultsTwenty-one families (4 children; 21 parents) and 11 health professionals from 11 English National Health Service (NHS) trusts and a Welsh health board were interviewed. Families often felt highly anxious during diagnosis. Some families described a disorderly process, gaps or inconsistencies in information, and insensitive communication that contributed to their anxiety. However, other families described more positive experiences, indicating how health professionals helped them feel prepared by providing an outline of the likely timelines, the rationale for different investigations and the potential need to adjust plans when new information became available. Both health professionals and families recognized the importance of direct and age-appropriate communication between health professionals and children, and the involvement of play specialists to communicate with children.ConclusionThis is the first study to describe experiences of communication in suspected paediatric osteomyelitis. The findings demonstrate the importance of health professionals helping to prepare families for the diagnostic journey and underline how information provision and communication can influence the extent to which families experience anxiety and uncertainty. The findings are broadly supportive of previously published recommendations that aim to assist health professionals with the challenges of communication with patients in inherently uncertain and fluid diagnostic contexts.
EVALUATING THE ACCEPTABILITY AND USABILITY OF THE NON-STOP APP FOR CHILDREN WITH PERTHES' DISEASE AND THEIR FAMILIES
IntroductionPerthes' Disease affects the blood supply to the femoral head, leading to pain, mobility issues, and prolonged recovery, impacting a child's quality of life. Effective self-management interventions have been identified by key stakeholders as acceptable methods of helping children and families manage the disease. We assessed the usability and acceptability of the NON-STOP app, a digital self-management intervention designed for children with Perthes' Disease and their families.MethodA mixed-methods approach was employed. Thirty-one children with Perthes' Disease were recruited to test the app. App usage data were collected, and participants completed baseline and post-trial assessments. Following the trial, a subset of participants took part in focus groups to explore their experiences and gather qualitative feedback on the app.ResultsQuantitative findings showed moderate app engagement. Usage metrics were useful when considering optimum intervention dosage. The average pain score, measured using the Wong-Baker FACES scale, remained low, suggesting the app's exercises were well-tolerated. Qualitative feedback from the focus groups indicated that the app was generally well-received. A key strength to the intervention was the inclusion of rewards, and avatar customisation features, which motivated children to engage with the NON-STOP app.ConclusionsThe NON-STOP app was found to be an acceptable and usable tool for children with Perthes' Disease. The app's ability to promote self-management and independence in children was highlighted as a key benefit. These findings support the continued development and refinement of the NON-STOP app, with potential for broader implementation in future clinical trials targeting Perthes' Disease management.
A literature review of the healthcare resource use and productivity burden of X-linked hypophosphataemia.
INTRODUCTION: X-linked hypophosphataemia (XLH) is a rare, genetic, renal phosphate wasting disorder that causes a lifelong rapid progression of morbidities, which are associated with substantial humanistic and economic burden. A structured literature review was carried out to identify publications reporting healthcare resource use and productivity impact of XLH to provide a comprehensive description of the burden. METHODS: Literature searches of the Embase®, Medline®, and EconLit electronic databases were carried out in August 2022 using free-text and subject heading search terms regarding XLH-related clinical morbidities and associated healthcare resource use, limited to English language records from 1992 onwards. RESULTS: After screening by pre-specified inclusion/exclusion criteria, 22 publications were selected for inclusion in the review. Use of conventional pharmacological therapy with oral phosphate and/or active vitamin D was reported in 15 publications, in up to 100% of paediatric patients and 75% of adults. Findings indicated that a high proportion of patients with XLH undergo orthopaedic procedures/surgeries, including a history of osteotomy in up to 25% of paediatric patients and 61% of adults, and a history of growth plate stapling in up to 63% of paediatric patients and 20% of adults. A high prevalence of fractures (in up to 61% of adults) and use of assistive mobility devices was also reported. The findings highlighted a substantial prevalence of morbidities, either due to persistently low phosphate levels or complications of conventional therapy, that had directly associated healthcare resource use, including dental problems, hearing problems, hyperparathyroidism, and nephrocalcinosis. Healthcare resource use and associated clinical events were generally found to be higher in adults compared with paediatric patients, which is consistent with the natural history of XLH as a progressive lifelong condition. Studies also highlighted the negative impact of XLH on school attendance and the ability to work. DISCUSSION: The results of this structured literature review emphasise the lifelong impact of XLH, showing that it is associated with a substantial economic burden, across many healthcare resource use categories including pharmacological therapy, management of pain and mobility, orthopaedic procedures, morbidities due to XLH or conventional therapy, and work/school productivity.
Developing a Standardised Dataset for Natural History Studies in Fibrous Dysplasia/McCune-Albright Syndrome.
Fibrous dysplasia/McCune-Albright syndrome (FD/MAS) is a rare and complex condition caused by somatic variants in the GNAS gene that lead to a wide clinical spectrum. The diagnostic process and therapeutic pathway vary per centre and therefore international harmonisation of data collection should be pursued. To understand the diagnostic pathways and clinical outcomes of patients with FD/MAS reported on an electronic-reporting tool (e-REC) across European centres to guide the develop a condition-specific module within the European Registries for Rare Endocrine and Bone conditions. Centres that reported new cases on e-REC between October 2019 and May 2021 were approached to complete a survey in May 2021. Fifty-eight cases were included. Median age at presentation was 20 years (range, 0, 72). Of the 58 included cases, the presentation type was isolated craniofacial FD in 19 (33%), monostotic FD in 15 (26%), polyostotic FD in 10 (17%), and MAS in 13 (13%). Standardised questionnaires to assess pain and quality of life were used routinely in 21/58 patients (36%). The majority of patients had more than one healthcare provider, with great diversity in the specialty of the coordinating physician. A standardised dataset module for FD/MAS was developed through collaboration with the FD/MAS study group, incorporating expert consensus and clinical insights. Key variables were identified to capture essential diagnostic, clinical, and patient-reported outcomes. The diagnostic path for patients with FD/MAS across European expert centres is variable. The outcomes of this study allowed the building of the first international FD/MAS-specific data collection.
Long-term adherence to anti-osteoporosis medication and determinants of adherence in the population-based screening trial ROSE.
UNLABELLED: Screening initiatives for osteoporosis must facilitate treatment of those at elevated fracture risk. In a randomized controlled trial of 24,229 women, those in the screening group with FRAX ≥ 15% were invited for DXA with AOM treatment offered as per national guidelines. Treatment initiation in the following year was 9.5 times higher compared with controls. PURPOSE: To determine if screened individuals have lower adherence to anti-osteoporotic medication (AOM) than unscreened and to examine determinants for low treatment adherence. METHOD: In 2010/2011, women aged 65-80 (N = 34,229) in the Region of Southern Denmark were invited to the risk-stratified osteoporosis strategy evaluation (ROSE) randomized study. Women in the screening group with moderate to high 10-year fracture risk (FRAX® ≥ 15%) were invited for dual-energy x-ray absorptiometry with AOM treatment as per national guidelines. Screened, controls, and an age-matched general population sample were compared for adherence to AOM using 10-year follow-up data on prescription and hospital records. RESULTS: Among ROSE participants with FRAX ≥ 15%, 5864 screened and 5790 controls were eligible for analysis, along with an equal number from the general population. AOM initiation in the first year was 9.5 times higher in screened compared to controls (HR 9.50, 7.16; 12.61). There was no difference in implementation assessed as medication possession ratio. The 5-year persistence rates were similar in screened and controls (51-52%), but lower in the general population (44%). FRAX risk factors partly influenced AOM initiation in the screened, with different patterns in other groups. Immobilization, comorbidities, and co-medications were key determinants of discontinuation in both the short and long term. CONCLUSION: The ROSE screening programme significantly increased treatment initiation in postmenopausal women. Screened women showed similar treatment adherence levels to non-screened once they started medication. However, frail women were more prone to treatment discontinuation, highlighting the need for targeted support in this subgroup. TRIAL REGISTRATION: The original ROSE trial is registered at ClinicalTrials.gov (NCT01388244). The study protocol has been published in Rubin et al. The risk-stratified osteoporosis strategy evaluation study (ROSE): a randomized prospective population-based study. Design and baseline characteristics. Calcif Tissue Int. 2015;96(2):167-79.