Caregiver Experiences Using Orthotic Treatment Options for Developmental Dysplasia of the Hip in Children.

BACKGROUND: Developmental dysplasia of the hip (DDH) is a common condition affecting 5 in 1000 newborns. The standard first line of treatment is the use of an orthotic, which has generally high success rates, but can pose substantial difficulties and put undue burden on caregivers. The general experience of caregivers using these orthotics has not been well documented on an orthotic-specific basis. The purpose of this study was to investigate caregiver experience using prescribed DDH orthotics to identify challenges, differences between treatment options, and areas of improvement. METHODS: A survey assessing treatment prescription, respondent demographics, and caregiver experience was distributed online to caregivers whose child/children were treated for DDH with an orthotic. Seven-point positively phrased Likert scale statements and open-ended questions were included to assess caregiver experience. The results were analyzed using summary statistics and orthotics with more than 30 responses were selected for more in-depth analysis. RESULTS: A total of 530 survey responses were collected with 63% (334/530) of respondents using a Pavlik harness, 45% (236/530) a Rhino brace, and 13% (67/530) a Denis Browne Bar. The overall weighted average score across all Likert Scale statements was positive for the Pavlik harness, Rhino brace, and Denis Browne Bar at 4.19 (95% CI, 3.83 to 4.54), 4.63 (95% CI, 4.27 to 4.99) and 4.91 (95% CI, 4.58 to 5.24), respectively. In the open-ended responses, all 3 orthotics were perceived as easy to use and not hindering child-caregiver bonding, but raised concerns of discomfort and skin irritation, as well as preventing the ability to cuddle their child the way they desired. The Pavlik harness respondents consistently brought up concerns regarding cleanability. CONCLUSIONS: The results show that the DDH orthotics analyzed are generally easy to use and perceived positively by caregivers, but have orthotic-specific challenges that should be a focus of future improvement work. CLINICAL RELEVANCE: This study evaluated opinions and attitudes of caregivers for children being treated with DDH orthotics, revealing experiences, concerns, and challenges associated with the use of commonly prescribed options.

A Global Survey of Patient and Caregiver Experiences Throughout Care for Developmental Dysplasia of the Hip.

BACKGROUND: Diagnosis and treatment for developmental dysplasia of the hip (DDH) varies greatly depending on condition severity, age at diagnosis, and professional opinion. Little is known about patient experiences across the globe. We aimed to characterize global patient and caregiver experiences during DDH care and to highlight patient-identified priorities. METHODS: We developed a cross-sectional survey in collaboration with 7 DDH outreach organizations. DDH patients and/or their caregivers (above 18 y old) were invited to complete an international online survey about their experiences. Participants were recruited through web media of all collaborating organizations. Data collection took place over 3 months. Descriptive statistics were used to analyze quantitative results. Qualitative content analysis was used to categorize open-ended responses. RESULTS: A total of 739 participants completed the survey, representing 638 (86.3%) parents/guardians of DDH patients, and 101 (13.7%) patients. Three hundred eighty-six (52.2%) participants received diagnosis by 3 months of age; mean age of diagnosis was 15.96 months (90% confidence interval=12.04, 19.91). Of 211 participants with family history of DDH, 68 (32.3%) did not receive DDH screening. Of 187 patients born breech, 82 (43.9%) did not receive DDH screening. In total, 36/94 (38.3%) participants with both family history and breech birth did not receive DDH screening. Most participants reported treatment (696/730, 95.3%), including bracing (n=461) surgery (n=364), and/or closed reduction (n=141). A total of 144 patients reported >1 surgery; 82 reported >3 surgeries. Participants reported a range of 1 to 400 visits to health care professionals for DDH care across 1 to 66 years. Lack of information and resources on treatment practicalities and timelines, along with emotional burden of diagnosis, were greatest challenges reported. CONCLUSION: Results demonstrate that DDH diagnosis and treatment can pose significant burden on patients and caregivers. Reliable public information is needed to support those affected. Global educational efforts are needed to raise awareness of DDH risk factors, signs, and symptoms among care providers, to increase awareness and improve identification, screening, and monitoring of at-risk children.

Survey of the Impact of COVID-19 on Pediatric Orthopaedic Surgeons Globally.

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic required rapid, global health care shifts to prioritize urgent or pandemic-related care and minimize transmission. Little is known about impacts on pediatric orthopaedic surgeons during this time. We aimed to investigate COVID-19-related changes in practice, training, and research among pediatric orthopaedic surgeons globally. METHODS: An online survey was administered to orthopaedic surgeons with interest in pediatrics in April 2020 and a follow-up was administered in February 2021. The surveys captured demographics and surgeons' self-reported experiences during the pandemic. Participants were recruited from web media and available email lists of orthopaedic societies over a 2-month period. Descriptive statistics were used to analyze results, stratified by the severity of local COVID-19-related measures. RESULTS: A total of 460 responses from 45 countries were collected for initial survey. Of these, 358 (78.5%) respondents reported lockdown measures in their region at time of survey. Most (n=337, 94.4%) reported pausing all elective procedures. Surgeons reported a reduction in the average number of surgeries per week, from 6.89 (SD=4.61) prepandemic to 1.25 (SD=2.26) at time of survey (mean difference=5.64; 95% confidence interval=5.19, 6.10). Average number of elective outpatient appointments per week decreased from 67.89 (SD=45.78) prepandemic to 11.79 (SD=15.83) at time of survey (mean difference=56.10, 95% confidence interval=5.61, 60.58). In total, 177 (39.4%) surgeons reported using virtual modes of outpatient appointments for the first time. Of 290 surgeons with trainees, 223 (84.5%) reported implementation of systems to continue training such as webinars or virtual rounds. Of 192 respondents with research, 149 (82.8%) reported continuing research activities during the pandemic with most reporting either cessation (n=75, 64.15%), or reduction (n=25, 29.9%) in participant recruitment. A total of 111 responses from 28 countries were collected during follow-up. Surgeons described policy and circumstantial changes that facilitated resumption of clinical work. CONCLUSIONS: The COVID-19 pandemic and its related counter measures have had significant impacts on pediatric orthopaedic practice and increased uptake of technology to provide care continuity. Rigorous epidemiological studies are needed to assess impacts of delayed and virtual care on patient outcomes.

Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study.

BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study using semistructured interviews between April and July 2019. Participants were parents of children attending BC Children's Hospital oncology or palliative care clinics, recruited through posters, emails or referral. Participants were included if they spoke English and their child used any type of cannabis for medical purposes. Interviews included open-ended questions about the child's cannabis use. Interviews were recorded and transcribed, and thematic analysis was performed using qualitative description. RESULTS: Ten interviews were completed with 9 mothers and 1 mother-father pair. The age range of the children was 22 months to 16 years. The primary reasons for cannabis use were epilepsy (6 children) or chemotherapy management (4 children). Five major themes were identified. 1) Child and family context, and cannabis as a last resort: children were seen as severely ill; parents sought cannabis out of desperation and responsibility to their child. 2) Varied information sources informed decision-making: parents lacked resources from health care providers and sought support from social media, industry and other families. 3) Cannabis as an ambiguous medicine: cannabis was viewed as both a serious drug that doctors should prescribe and as a natural alternative health product, safe to pursue alone. 4) Perceived effects: parents perceived medical benefits with few concerns about adverse effects. 5) Legal and financial challenges: parents were willing to obtain cannabis despite high costs and uncertain legality. INTERPRETATION: Parents of children with severe conditions pursued medical cannabis despite obstacles and needed unbiased information to access alone. Scientific investigation is needed to develop pediatric medical guidelines to inform decisions.