What are the views of adults with an intellectual disability (AWID), carers and healthcare professionals on a community falls management programme for AWID: a qualitative interview study in the UK.

OBJECTIVES: The aim of this study was to refine a draft of the ACTiON FALLS LD programme based on the views of adults with an intellectual disability (AWID), carers and healthcare professionals (HCPs). DESIGN, SETTING AND PARTICIPANTS: The semistructured interview study included HCP as well as AWID and carers supporting AWID living in the community. Community settings included sheltered living, supported living, AWID living at home with family carers or independently. The interview study explored the first draft of the ACTiON FALLS LD programme as well as the wider falls management for AWID. Interviews with AWID were developed to include a range of approaches (eg, case studies, pictures) to support inclusive participation. Individual interviews were digitally recorded and transcribed. Researcher notes were used during interviews with AWID. All data were analysed using the principles of framework analysis. RESULTS: 14 HCP, 8 carers and 13 AWID took part in the interview process. Five key themes were identified: programme components, programme design, programme approach, who would use the programme and programme delivery. CONCLUSIONS: The views of AWID, HCP and carers showed the need to consider the impact of risk perception, anxiety and fear of falling in the adaption of the ACTiON FALLS programme. The programme needs to be accessible and support the inclusion of AWID in managing falls and ultimately fulfil the requirement for a proactive and educational tool by all.

Surgical outcomes for spinal deformity in osteogenesis imperfecta.

STUDY DESIGN: IRB approved retrospective review of the the SHOnet (Shriners Health Outcomes Network). OBJECTIVES: Osteogenesis imperfecta (OI) is the most prevalent genetic disorder of bone and connective tissue in the pediatric population, with an incidence of 1/15,000-20,000. Scoliosis has been reported to be present in 39-100% of OI patients and may continue to progress into adulthood but there is little information on the perioperative outcomes, rates of revision surgery and complications in this fragile population. The purpose of this study is to examine the prevalence of scoliosis in the OI population across a tertiary care multihospital system. The rate at which these patients progress to surgery, the perioperative complication rate and if there is an association between complications and age at surgical intervention, pre-operative Cobb angle, number of fractures, and type of OI. Incidence of scoliosis in OI may be lower than previously reported, many may never require surgical intervention and those that do require surgical intervention have an 8% reoperation rate at an average of 3.3 years postop. METHODS: IRB approved retrospective review of the the SHOnet (Shriners Health Outcomes Network), electronic health record data warehouse from January 1, 2011 and December 31, 2017. Inclusion criteria included International Classification of Diseases (ICD) code for osteogenesis imperfecta and scoliosis. The data warehouse was queried for age, gender, presence of vertebral body fractures, proximal junctional kyphosis, basilar invagination, bisphosphonate use, and perioperative complications including postoperative infection. RESULTS: There were 2372 patients with osteogenesis imperfecta, 429 or 18.1% also had a diagnosis of scoliosis, while 81.9% did not (see Table 1). Only 74 patients (17.2%) of the patients that had scoliosis underwent spine surgery, 12 of which had staged surgery with an average preop thoracic Cobb 58.18 (range 7-115), and thoracolumbar Cobb 59.83 (range 5-145). Six patients (8%) required revision spine surgery. Average time to revision was 3.88 years (6.9-69mo). Bisphosphonate use was present in 35.5% of patients that did not require surgery and in 40.5% that did. CONCLUSION: With over 2300 patients, this is the largest study to date on scoliosis in patients with OI. We found that contrary to prior studies which had indicated the incidence of scoliosis ranges from 39 to 100% that it was only present in 18% of our patients. This indicates that the incidence of scoliosis in OI is potentially lower than previously reported, though due to the nature of this study it may be underreported. Furthermore, only 17% of those patients in our study with scoliosis eventually underwent surgery. It is important to note that many patients treated non-operatively had deformity within the operative range, which may indicate that they were not considered good candidates for surgical intervention. Lastly, we found that bisphosphonate use did not appear to affect the likelihood of progression to surgery in this group of patients, though this may be due to later initiation of the bisphosphonate use.

Health information needs, source preferences and engagement behaviours of women with metastatic breast cancer across the care continuum: protocol for a scoping review.

INTRODUCTION: The health information needs, information source preferences and engagement behaviours of women with metastatic breast cancer (mBC) depend on personal characteristics such as education level, prior knowledge, clinical complications, comorbidities and where they are in the cancer journey. A thorough understanding of the information behaviours of women living with mBC is essential to the provision of optimal care. A preliminary literature review suggests that there is little research on this topic, but that there may be lessons from a slightly broader literature. This review will identify what is known and what is not known about the health information needs, acquisition and influences of women with mBC across the care continuum. Findings will help to identify research needs and specific areas where in-depth systematic reviews may be feasible, as well as inform evidence-based interventions to address the health information needs of female patients with mBC with different demographics and characteristics and across the mBC journey. METHODS AND ANALYSIS: A scoping review will be performed using the guidelines of Arksey and O'Malley as updated by subsequent authors to systematically search scientific and grey literature for articles in English that discuss the health information needs, source preferences, engagement styles, and associated personal and medical attributes of women ≥18 years living with mBC at different stages of the disease course. A variety of databases (including Cumulative Index to Nursing and Allied Health Literature (CINAHL), PubMed, Excerpta Medica Database (EMBASE), Academic Search Premier, Cochrane Database of Systematic Reviews, PsycINFO, Health Source: Nursing/Academic Edition, and PQDT Open), oncology, patient advocacy and governmental websites will be searched from inception to present day. Research and non-research literature will be included; no study designs will be excluded. The six-stage Arksey and O'Malley scoping review methodological framework involves: (1) identifying the research question; (2) searching for relevant studies; (3) selecting studies; (4) charting the data; (5) collating, summarising and reporting the results; and (6) consulting with stakeholders to inform or validate study findings (optional). Data will be extracted and analysed using a thematic chart and descriptive content analysis. ETHICS AND DISSEMINATION: Being a secondary analysis, this research will not require ethics approval. Results will be disseminated through patient support organisations and websites and publications targeting healthcare professionals, advocates and patients.