Aims. Perthes’ disease is an idiopathic avascular necrosis of the developing femoral head, often causing deformity that impairs physical function. Current treatments aim to optimize the joint reaction force across the hip by enhancing congruency between the acetabulum and femoral head. Despite a century of research, there is no consensus regarding the optimal treatment. The aim of this study was to describe the experiences of children, their families, and clinicians when considering the treatment of Perthes’ disease. Methods. A qualitative study gathered information from children and their families affected by Perthes’ disease, along with treating clinicians. Interviews followed a coding framework, with the interview schedule informed by behavioural theory and patient and public involvement. Transcripts were analyzed using the framework method. Results. A total of 24 interviews took place, with 12 child/family dyads and 12 clinicians from UK NHS centres. Interviews identified widespread variation of routine care. Children/their families recounted positive experiences when included in the decision-making process for treatment. There is a strong desire from clinicians and children/families for consistent guidance from everyone involved in care, which should be based on clinical consensus. Conclusion. This is the first study to describe how children/families and clinicians experienced receiving or providing treatment in Perthes’ disease. The results indicate the need for robust evidence to support treatment decisions. Children and families valued feeling involved in the clinical decision-making process. Clinicians acknowledged the central importance of providing patient-centred care, particularly in the absence of robust evidence to guide the optimal treatment decisions. This study will inform a future Delphi project to develop clinical consensus guidelines for the treatment of Perthes’ disease. Cite this article: Bone Jt Open 2023;4(10):735–741

Aims. The aim of this study was to identify the information topics that should be addressed according to the parents of children with developmental dysplasia of the hip (DDH) in the diagnostic and treatment phase during the first year of life. Second, we explored parental recommendations to further optimize the information provision in DDH care. Methods. A qualitative study with semi-structured interviews was conducted between September and December 2020. A purposive sample of parents of children aged younger than one year, who were treated for DDH with a Pavlik harness, were interviewed until data saturation was achieved. A total of 20 interviews with 22 parents were conducted. Interviews were audio recorded, transcribed verbatim, independently reviewed, and coded into categories and themes. Results. Interviews revealed four fundamental information topics that should be addressed in the different phases of the DDH healthcare trajectory: general information (screening phase), patient-specific information (diagnostic and treatment phase), practical information (treatment phase), and future perspectives (treatment and follow-up phase). To further optimize the information provision in DDH care, parents wished for more accessible and trustworthy general information prior to the first hospital visit to be better prepared for the diagnosis. Furthermore, parents wanted more personalized and visually supported information for a better understanding of the nature of the disease and the reason for treatment. Conclusion. This study offers novel insights to optimize the information provision in DDH care. The main finding is the shift in information need from general information in the screening phase to patient-specific information in the diagnostic and treatment phase of DDH. Parents prefer visually-supported information, provided in a timely fashion, and tailored to their child’s situation. These recommendations potentially decrease parental anxiety, insecurity, confusion, and increase parental empowerment and treatment adherence throughout the diagnostic and treatment phase of DDH. Cite this article: Bone Jt Open 2023;4(7):496–506

Aims. To identify the minimum set of outcomes that should be collected in clinical practice and reported in research related to the care of children with idiopathic congenital talipes equinovarus (CTEV). Methods. A list of outcome measurement tools (OMTs) was obtained from the literature through a systematic review. Further outcomes were collected from patients and families through a questionnaire and interview process. The combined list, as well as the appropriate follow-up timepoint, was rated for importance in a two-round Delphi process that included an international group of orthopaedic surgeons, physiotherapists, nurse practitioners, patients, and families. Outcomes that reached no consensus during the Delphi process were further discussed and scored for inclusion/exclusion in a final consensus meeting involving international stakeholder representatives of practitioners, families, and patient charities. Results. In total, 39 OMTs were included from the systematic review. Two additional OMTs were identified from the interviews and questionnaires, and four were added after round one Delphi. Overall, 22 OMTs reached ‘consensus in’ during the Delphi and two reached ‘consensus out’; 21 OMTs reached ‘no consensus’ and were included in the final consensus meeting. In all, 21 participants attended the consensus meeting, including a wide diversity of clubfoot practitioners, parent/patient representative, and an independent chair. A total of 21 outcomes were discussed and voted upon; six were voted ‘in’ and 15 were voted ‘out’. The final COS document includes nine OMTs and two existing outcome scores with a total of 31 outcome parameters to be collected after a minimum follow-up of five years. It incorporates static and dynamic clinical findings, patient-reported outcome measures, and a definition of CTEV relapse. Conclusion. We have defined a minimum set of outcomes to draw comparisons between centres and studies in the treatment of CTEV. With the use of these outcomes, we hope to allow more meaningful research and a better clinical management of CTEV. Cite this article: Bone Jt Open 2022;3(1):98–106

Aims. The aim of this study is to develop a core set of outcome domains that should be considered and reported in all future trials of childhood limb fractures. Methods. A four-phase study was conducted to agree a set of core outcome domains. Identification of candidate outcome domains were identified through systematic review of trials, and outcome domains relevant to families were identified through semi-structured interviews with 20 families (parent-child pairing or group). Outcome domains were prioritized using an international three-round Delphi survey with 205 panellists and then condensed into a core outcome set through a consensus workshop with 30 stakeholders. Results. The systematic review and interviews identified 85 outcome domains as relevant to professionals or families. The Delphi survey prioritized 30 upper and 29 lower limb outcome domains at first round, an additional 17 upper and 18 lower limb outcomes at second round, and four additional outcomes for upper and lower limb at the third round as important domains. At the consensus workshop, the core outcome domains were agreed as: 1) pain and discomfort; 2) return to physical and recreational activities; 3) emotional and psychosocial wellbeing; 4) complications from the injury and treatment; 5) rturn to baseline activities daily living; 6) participation in learning; 7) appearance and deformity; and 8) time to union. In addition, 9a) recovery of mobility and 9b) recovery of manual dexterity was recommended as a core outcome for lower and upper limb fractures, respectively. Conclusion. This set of core outcome domains is recommended as a minimum set of outcomes to be reported in all trials. It is not an exhaustive set and further work is required to identify what outcome tools should be used to measure each of these outcomes. Adoption of this outcome set will improve the consistency of research for these children that can be combined for more meaningful meta-analyses and policy development. Cite this article: Bone Joint J 2021;103-B(12):1821–1830

Aims. The aim of this study was to explore parents’ experience of their child’s recovery, and their thoughts about their decision to enrol their child in a randomized controlled trial (RCT) of surgery versus non-surgical casting for a displaced distal radius fracture. Methods. A total of 20 parents of children from 13 hospitals participating in the RCT took part in an interview five to 11 months after injury. Interviews were informed by phenomenology and analyzed using thematic analysis. Results. Analysis of the findings identified the theme “being recovered”, which conveyed: 1) parents’ acceptance and belief that their child received the best treatment for them; 2) their memory of the psychological impact of the injury for their child; and 3) their pride in how their child coped with their cast and returned to activities. The process of recovery was underpinned by three elements of experience: accepting the treatment, supporting their child through challenges during recovery, and appreciating their child’s resilience. These findings extend our framework that highlights parents’ desire to protect their child during early recovery from injury, by making the right decision, worrying about recovery, and comforting their child. Conclusion. By one year after injury, parents in both treatment groups considered their child “recovered”. They had overcome early concerns about healing, the appearance of the wrist, and coping after cast removal. Greater educational support for families during recovery would enable parents and their child to cope with the uncertainty of recovery, particularly addressing the loss of confidence, worry about reinjury, and the appearance of their wrist. Cite this article: Bone Jt Open 2024;5(5):426–434

Aims. The aim of this study was to explore clinicians’ experience of a paediatric randomized controlled trial (RCT) comparing surgical reduction with non-surgical casting for displaced distal radius fractures. Methods. Overall, 22 staff from 15 hospitals who participated in the RCT took part in an interview. Interviews were informed by phenomenology and analyzed using thematic analysis. Results. Analysis of the findings identified the overarching theme of “overcoming obstacles”, which described the challenge of alleviating staff concerns about the use of non-surgical casting and recruiting families where there was treatment uncertainty. In order to embed and recruit to the Children’s Radius Acute Fracture Fixation Trial (CRAFFT), staff needed to fit the study within clinical practice, work together, negotiate treatment decisions, and support families. Conclusion. Recruiting families to this RCT was challenging because staff were uncertain about longer-term patient outcomes, and the difficulties were exacerbated by interdisciplinary tensions. Strong family and clinician beliefs, coupled with the complex nature of emergency departments and patient pathways that differed site-by-site, served as barriers to recruitment. Cementing a strong research culture, and exploring families’ treatment preferences, helped to overcome recruitment obstacles. Cite this article: Bone Jt Open 2024;5(4):324–334

Aims. The aim of this study was to explore parents and young people’s experience of having a medial epicondyle fracture, and their thoughts about the uncertainty regarding the optimal treatment. Methods. Families were identified after being invited to participate in a randomized controlled trial of surgery or no surgery for displaced medial epicondyle fractures of the humerus in children. A purposeful sample of 25 parents (22 females) and five young people (three females, mean age 11 years (7 to 14)) from 15 UK hospitals were interviewed a mean of 39 days (14 to 78) from injury. Qualitative interviews were informed by phenomenology and themes identified to convey participants’ experience. Results. The results identify parents’ desire to do the best for their child expressed through two themes: 1) ‘uncertainty’ (being uncertain about the best treatment option); and 2) ‘facilitating recovery’ (sharing the experience). Parents and young people were shocked when confronted with uncertainty about treatment and they felt responsible for the decision. They searched for further information, drew on their own experience, and struggled to weigh up risks of the treatments. Discussion with surgeons provided crucial support for decision-making, and young people were involved to a varying degree. In facilitating recovery, parents balanced increasing activity with protecting their child, but lacked knowledge about pain management, and how to improve strength and function of the arm. They hoped for a return to normal, including competitive sports. Conclusion. Surgeons are aware of the impact of injury on children and their parents; however, they may be less aware of the turmoil created by treatment uncertainty. Confident surgeons who appreciate and contextualize the importance of pre-existing experience and beliefs are best placed to help the family develop confidence to embrace uncertainty, particularly regarding participation in clinical trials. Cite this article: Bone Jt Open 2021;2(6):359–364

Aims. This study aims to define a set of core outcomes (COS) to allow consistent reporting in order to compare results and assist in treatment decisions for idiopathic clubfoot. Methods. A list of outcomes will be obtained in a three-stage process from the literature and from key stakeholders (patients, parents, surgeons, and healthcare professionals). Important outcomes for patients and parents will be collected from a group of children with idiopathic clubfoot and their parents through questionnaires and interviews. The outcomes identified during this process will be combined with the list of outcomes previously obtained from a systematic review, with each outcome assigned to one of the five core areas defined by the Outcome Measures Recommended for use in Randomized Clinical Trials (OMERACT). This stage will be followed by a two round Delphi survey aimed at key stakeholders in the management of idiopathic clubfoot. The final outcomes list obtained will then be discussed in a consensus meeting of representative key stakeholders. Conclusion. The inconsistency in outcomes reporting in studies investigating idiopathic clubfoot has made it difficult to define the success rate of treatments and to compare findings between studies. The development of a COS seeks to define a minimum standard set of outcomes to collect in all future clinical trials for this condition, to facilitate comparisons between studies and to aid decisions in treatment. Cite this article: Bone Jt Open 2021;2(4):255–260

Aims. To identify a suite of the key physical, emotional, and social outcomes to be employed in clinical practice and research concerning Perthes' disease in children. Methods. The study follows the guidelines of the COMET-Initiative (Core Outcome Measures in Effectiveness Trials). A systematic review of the literature was performed to identify a list of outcomes reported in previous studies, which was supplemented by a qualitative study exploring the experiences of families affected by Perthes’ disease. Collectively, these outcomes formed the basis of a Delphi survey (two rounds), where 18 patients with Perthes’ disease, 46 parents, and 36 orthopaedic surgeons rated each outcome for importance. The International Perthes Study Group (IPSG) (Dallas, Texas, USA (October 2018)) discussed outcomes that failed to reach any consensus (either ‘in’ or ‘out’) before a final consensus meeting with representatives of surgeons, patients, and parents. Results. In total, 23 different outcome domains were identified from the systematic review, and a further ten from qualitative interviews. After round one of the Delphi survey, participants suggested five further outcome domains. A total of 38 outcomes were scored in round two of the Delphi. Among these, 16 outcomes were scored over the prespecified 70% threshold for importance (divided into six main categories: adverse events; life impact; resource use; pathophysiological manifestations; death; and technical considerations). Following the final consensus meeting, 14 outcomes were included in the final Core Outcome Set (COS). Conclusion. Core Outcome Sets (COSs) are important to improve standardization of outcomes in clinical research and to aid communication between patients, clinicians, and funding bodies. The results of this study should be a catalyst to develop high-quality clinical research in order to determine the optimal treatments for children with Perthes’ disease. Cite this article: Bone Joint J 2020;102-B(5):611–617

Aims

To examine the long-term outcome of arthrodesis of the hip undertaken in a paediatric population in treating painful arthritis of the hip. In our patient population, most of whom live rurally in hilly terrain and have limited healthcare access and resources, hip arthrodesis has been an important surgical option for the monoarticular painful hip in a child.

Aims

Within healthcare, several measures are used to quantify and compare the severity of health conditions. Two common measures are disability weight (DW), a context-independent value representing severity of a health state, and utility weight (UW), a context-dependent measure of health-related quality of life. Neither of these measures have previously been determined for developmental dysplasia of the hip (DDH). The aim of this study is to determine the DW and country-specific UWs for DDH.

Aims

The paediatric trigger thumb is a distinct clinical entity with unique anatomical abnormalities. The aim of this study was to present the long-term outcomes of A1 pulley release in idiopathic paediatric trigger thumbs based on established patient-reported outcome measures.

Aim. This pilot study aimed to identify the important symptomatic, functional and psychosocial aspects of hip disorders from the perspective of adolescent patients and their families in order to begin developing a patient-focused instrument (Bridging Adolescent Self-Reported Hip – BASH - score). Methods. This was a qualitative patient-centred study at a tertiary paediatric orthopaedic centre involving 50 adolescents aged 13–17 years, composed of five groups of 10 adolescents with slipped capital femoral epiphysis (SCFE), hip dysplasia (DDH), labral tears undergoing arthroscopic treatment, lower limb trauma and a miscellaneous group with conditions including Perthes' disease. A control group of 100 adolescents were also interviewed from a local school. Adolescent and separate concurrent parent groups underwent an ‘open’ phase face-to-face or telephone interview (theme development). This involved agreeing or disagreeing with statements, and open exploration of ideas related to the ‘day in the life’ of an adolescent with hip problems in order to generate and specify themes. This was followed by ranking and finally, scoring and testing. Results. All focus groups consistently and successfully generated themes related to hip problems and the majority of adolescents and parents were able to easily localise their issues to the hip. The ranking activity enabled the final definition of three key themes: a) physical symptoms, b) limitations and restrictions on life activities and situations and c) emotional experiences and self-consciousness which formed the basis of scoring and testing and the test version of the BASH score for adolescents. Scaling was developed with a total of 20 items rated on a five-point scale based on the frequency of effect from 0 (always) to 5 (never) providing a maximum score of 100. Conclusion. The BASH score is the first patient-reported outcome score for adolescent hip disorders developed with adolescents for adolescents

Club foot was diagnosed by ultrasonography in 91 feet (52 fetuses) at a mean gestational age of 22.1 weeks (14 to 35.6). Outcome was obtained by chart review in 26 women or telephone interview in 26. Feet were classified as normal, positional deformity, isolated club foot or complex club foot. At initial diagnosis, 69 feet (40 fetuses) were classified as isolated club foot and 22 feet (12 fetuses) as complex club foot. The diagnosis was changed after follow-up ultrasound scan in 13 fetuses (25%), and the final ultrasound diagnosis was normal in one fetus, isolated club foot in 31 fetuses, and complex club foot in 20 fetuses. At birth, club foot was found in 79 feet in 43 infants for a positive predictive value of 83%. Accuracy of the specific diagnosis of isolated club foot or complex club foot was lower; 63% at the initial ultrasound scan and 73% at the final scan. The difference in diagnostic accuracy between isolated and complex club foot was not statistically significant. In no case was postnatal complex club foot undiagnosed on fetal ultrasound and all inaccuracies were overdiagnoses. Karyotyping was performed in 25 cases. Abnormalities were noted in three fetuses, all with complex club foot and with additional findings on ultrasound

We reviewed retrospectively 45 patients (46 procedures) with bladder exstrophy treated by bilateral oblique pelvic osteotomy in conjunction with genitourinary repair. The operative technique and post-operative management with or without external fixation are described. A total of 21 patients attended a special follow-up clinic and 24 were interviewed by telephone. The mean follow-up time was 57 months (24 to 108). Of the 45 patients, 42 reported no pain or functional disability, although six had a waddling gait and two had marked external rotation of the hip. Complications included three cases of infection and loosening of the external fixator requiring early removal with no deleterious effect. Mid-line closure failed in one neonate managed in plaster. This patient underwent a successful revision procedure several months later using repeat osteotomies and external fixation. The percentage pubic approximation was measured on anteroposterior radiographs pre-operatively, post-operatively and at final follow-up. The mean approximation was 37% (12% to 76%). It varied markedly with age and was better when external fixation was used. The wide range reflects the inability of the anterior segment to develop naturally in spite of close approximation at operation. We conclude that bilateral oblique pelvic osteotomy with or without external fixation is useful in the management of difficult primary closure in bladder exstrophy, failed primary closure and secondary reconstruction

Purpose. To examine the effect of limb lengthening on the quality of life of people who have disproportionate short stature (DSS). Method. Thirteen previous patients, completed the SF-36, the Derriford Appearance Scale and participated in face to face semi structured interviews to establish the impact on their physical and social functioning, their present situation including employment, education, housing and leisure activities and their thoughts about whether they felt the treatment had been worthwhile. To increase understanding about the patient and family experience of limb lengthening, participants were asked about their memories of the procedure and the treatment period. Results. Much was learned about key areas such as pain control, pin site cleaning and physiotherapy. The importance of the role of families in supporting the patient through the treatment was strongly emphasised and how this was sometimes at the expense of siblings. Conclusions. Overall all participants were able to find some benefit to the procedure but they had mixed feelings about the outcome. There was evidence of benefit to some physical capabilities and confidence levels but there were areas where the situation was similar to those with DSS who had not had surgery e.g. bodily pain. It is acknowledged that this study has some methodological weaknesses which reduce the strength of the findings

Identification of the paediatric orthopaedic patient at high risk of venous thromboembolism (VTE) can allow a targeted approach to thromboprophylaxis. There is currently no national consensus on the correct method of risk assessment in this patient group. The Royal National Orthopaedic Hospital has developed a guideline using the evidence available to allow stratification of risk for the paediatric orthopaedic patient. A list of departments offering specialist paediatric orthopaedic surgery was obtained from the member list of the British Society of Paediatric Orthopaedic Surgeons (BSCOS). These hospitals were contacted via telephone interview to determine if they have a specific guideline or risk assessment proforma for paediatric VTE risk. A total of 74 hospitals were identified with a specialist paediatric orthopaedic practice in the United Kingdom. A response rate was gained from 100% of these hospitals. Only 3/74 of these hospitals had a guideline or protocol in place for the formal assessment of VTE risk in the paediatric patient (Royal National Orthopaedic Hospital, Stanmore; Sheffield Children's Hospital; Barts & the London NHS Trust). All three hospitals were able to provide details of their guideline. Both the RNOH and Barts & the London commented that their guideline was based on that of the Sheffield group, with adaptations for their own requirements. The majority of hospitals in the UK with a paediatric orthopaedic interest do not have guidance available for the management of VTE risk. Presented here is the outcome of using the limited evidence available, in combination with expert opinion, to develop a guideline suitable for the requirements of a paediatric unit in an orthopaedic hospital. This may be of benefit to other units producing their own guidelines, producing thought and discussion as to the specific requirements of paediatric patients undergoing orthopaedic procedures

Purpose of study. This study is to determine the survival and outcomes of the Birmingham Interlocking Triple Pelvic Osteotomy. A dysplastic hip predisposes to early arthritis. The Triple Pelvic Osteotomy (TPO) is a joint-preserving option for the treatment of young adults with hip dysplasia. The long term success of the procedure is not known. Patients and methods. The senior author has been performing Birmingham Interlocking Triple Pelvic Osteotomies for 18 years. The outcomes of the first 100 patients (117 TPOs) were reviewed using postal questionnaires, telephone interviews and radiograph review. The primary outcome measure of the study was the Kaplan—Meier survival curve for the TPO. Hip replacement or resurfacing were taken as failure points. The Oxford Hip Score (OHS) and University of California, Los Angeles (UCLA) score were used as secondary outcome measures for the surviving osteotomies. The pre-and post-operative acetabular index and centre-edge angles were measured from surviving radiographs. Results. Follow-up was 93% for survivorship. The mean age at operation was 31 years (range of 7 to 57 years). The mean pre- and post-operative centre-edge angles were 19°and 50° and acetabular indices were 23° and 2°. The Kaplan-Meier survival curve demonstrates that the 10, 15 and 18-year survival rates are 76%, 57% and 50% respectively. Survival was 89% if the osteotomy was performed before 20 years of age. The median UCLA score was five (inter-quartile range three to seven). Median OHS was 41 (inter-quartile range 24 to 46). The UCLA and OHSs show that those with surviving osteotomies tend to have good hip function. Conclusions. The Birmingham Interlocking Pelvic Osteotomy provides a valuable tool to preserve dysplastic hip function and delay arthroplasty surgery, particularly in the younger patient. It is best performed early before arthritis sets in

The results of a functional, clinical and radiological study of 30 children (60 hips) with whole-body cerebral palsy were reviewed at a mean follow-up of 10.2 years (9.5 to 11). Correction of windsweep deformity of the hips was performed by bilateral simultaneous combined soft-tissue and bony surgery at a mean age of 7.7 years (3.1 to 12.2). We were able to recall 22 patients; five had died of unrelated causes and three were lost to follow-up. Evaluation involved interviews with patients/carers and clinical and radiological examination. The gross motor functional classification system was used to assess overall motor function and showed improvement in seven patients. Of the 12 patients thought to have pain pre-operatively, only one had pain post-operatively. Improved handling was reported in 18 of 22 patients (82%). Those with handling problems were attributed by the carers to growth of the patients. All patients/carers considered the procedure worthwhile. The range of hip movements improved, and the mean windsweep index improved from 50 pre-operatively to 36 at follow-up. The migration percentage and centre-edge angle were assessed on plain radiographs. Radiological containment improved, the mean migration percentage improved from 50 pre-operatively to 20 at follow-up and the mean centre-edge angle improved from −5° to 29°. No statistical difference was noted between the three-year and ten-year follow-up results, indicating that the improvements in clinical and radiological outcome had been maintained

We reviewed 52 children, born between 1974 and 1985 with spina bifida affecting L3 and L4, who had dislocated hips. Their motor function was stable and they were able to walk at the time of dislocation. They were interviewed and examined physically and radiologically. Physical function was measured by the Rand Health Insurance Study questionnaire (HIS), the Childhood Health Assessment questionnaire (CHAQ), and by determining the functional level of ambulation according to Hoffer et al (1973). In a subgroup of 12 patients with L4 level of involvement from both treatment groups we measured the metabolic energy consumption while walking. Thirty patients (49 hips) had been treated by operative relocation and 22 conservatively. Ten of the hips treated by operation subluxated or redislocated. The function in the two groups (conservative v operated) was similar (HIS score 7.8 v 8.0, p = 0.45; CHAQ 14 v 13, p = 0.2; level of mobility 0.61 v 0.63, p = 0.5). Patients in whom operation had failed had worse function than did those with successful surgery (HIS score 8.8 v 6.1, p = 0.025) and those with successful surgery had better function than patients treated conservatively (HIS score 8.8 v 8.0, p = 0.15). Function in patients with failed operations, however, was worse than in those who did not have surgical treatment (HIS score 6.6 v 7.8, p = 0.07). In the 12 so examined the operated group had a 30% more energy-efficient gait (0.271 v 0.361 ml O. 2. kg/m, p = 0.05). Patients with failed operations had worse function than those who were not operated on. The benefit of surgical relocation of the dislocated hips was marginal