Using evidence-based co-design to develop a hybrid delivered exercise intervention that aims to increase confidence to exercise in people with haemophilia.

INTRODUCTION: Due to advances in treatments, people with haemophilia (PWH) are living longer. They are not as active as the general population due to joint damage and lack confidence to be active due to concerns about further bleeds and pain. There is a need to facilitate healthy aging through promotion of physical activity (PA) and exercise. Changing patient beliefs and increasing physical literacy and confidence to move are thought to be key to helping PWH become more active. AIM: This paper describes the development of an exercise and behaviour change intervention to improve confidence to exercise in PWH. METHODS: The 4-stage Medical Research Council framework for complex intervention development was used. RESULTS: Stakeholders included 17 PWH and 7 physiotherapists working in haemophilia. Seven online focus group meetings were held. The final intervention is a hybrid 12-week physiotherapist led progressive exercise programme. Classes are 45 min including Pilates, High intensity interval training and balance elements, together with discussion sessions focusing on PA recommendations, the types and benefits of different exercise styles and the effects of PA, together with the effects of aging for PWH. The COM-B model of behaviour change was used to develop the intervention. CONCLUSION: Co-design helps to produce an intervention that understands the stakeholders needs. Through this process the intervention developed to incorporate not only increasing PA but also confidence to exercise. The use of behaviour change theory identified the behaviour techniques included in the intervention and aims to increase physical literacy in this population.

Rehabilitation versus surgical reconstruction for non-acute anterior cruciate ligament injury (ACL SNNAP): a pragmatic randomised controlled trial.

BACKGROUND: Anterior cruciate ligament (ACL) rupture is a common debilitating injury that can cause instability of the knee. We aimed to investigate the best management strategy between reconstructive surgery and non-surgical treatment for patients with a non-acute ACL injury and persistent symptoms of instability. METHODS: We did a pragmatic, multicentre, superiority, randomised controlled trial in 29 secondary care National Health Service orthopaedic units in the UK. Patients with symptomatic knee problems (instability) consistent with an ACL injury were eligible. We excluded patients with meniscal pathology with characteristics that indicate immediate surgery. Patients were randomly assigned (1:1) by computer to either surgery (reconstruction) or rehabilitation (physiotherapy but with subsequent reconstruction permitted if instability persisted after treatment), stratified by site and baseline Knee Injury and Osteoarthritis Outcome Score-4 domain version (KOOS4). This management design represented normal practice. The primary outcome was KOOS4 at 18 months after randomisation. The principal analyses were intention-to-treat based, with KOOS4 results analysed using linear regression. This trial is registered with ISRCTN, ISRCTN10110685, and ClinicalTrials.gov, NCT02980367. FINDINGS: Between Feb 1, 2017, and April 12, 2020, we recruited 316 patients. 156 (49%) participants were randomly assigned to the surgical reconstruction group and 160 (51%) to the rehabilitation group. Mean KOOS4 at 18 months was 73·0 (SD 18·3) in the surgical group and 64·6 (21·6) in the rehabilitation group. The adjusted mean difference was 7·9 (95% CI 2·5-13·2; p=0·0053) in favour of surgical management. 65 (41%) of 160 patients allocated to rehabilitation underwent subsequent surgery according to protocol within 18 months. 43 (28%) of 156 patients allocated to surgery did not receive their allocated treatment. We found no differences between groups in the proportion of intervention-related complications. INTERPRETATION: Surgical reconstruction as a management strategy for patients with non-acute ACL injury with persistent symptoms of instability was clinically superior and more cost-effective in comparison with rehabilitation management. FUNDING: The UK National Institute for Health Research Health Technology Assessment Programme.

'Will I wear purple?'-a school arts-based research project in the UK to disseminate findings from a qualitative evidence synthesis about living to an extreme age.

BACKGROUND: a change in attitude towards ageing is needed. Arts-based research (ABR) refers to the use of any creative art in research. ABR can provide an environment to reflect on challenging social issues and has the potential to make lasting impressions. OBJECTIVE: we aimed to explore the use of ABR to disseminate findings from a qualitative evidence synthesis exploring what it means to live well beyond the age of 80. DESIGN: ABR using art as a stimulus for recorded discussions and written annotations. SETTING: a mixed catchment state secondary school in the UK. SUBJECTS: fifty-four secondary school pupils aged 14-15. The majority identified as female (ratio 5:1). METHODS: school pupils created artwork to represent themes about ageing drawn from a qualitative evidence synthesis. The artwork was a stimulus for recorded discussions. We used thematic analysis to develop themes about children's response to ageing. RESULTS: we developed six themes. Pupils found comfort in recognising that old age can be lived well; they began to see themselves in the older person; they explored the ambiguous nature of memory; they highlighted the dangers of disconnection; they affirmed a need to restore connection with elders and they recognised the need to cherish time and live meaningfully. CONCLUSIONS: this project encouraged pupils to think about what it means to grow old. ABR has the potential to contribute to a more positive relationship with older people and towards ageing. Research stakeholders should not undervalue the potential power of shifts in perspective for powering social change.

Associations Between Physical Activity and Adolescent Idiopathic Scoliosis: A Systematic Review and Meta-analysis.

OBJECTIVE: To investigate the associations between adolescent idiopathic scoliosis (AIS) and physical activity (PA). DATA SOURCES: MEDLINE, EMBASE, AMED, SPORTDiscus, Cochrane Library, and CINAHL electronic databases were searched from inception to August 2022/plus citation tracking. STUDY SELECTION: Observational studies of participants with radiographically confirmed AIS with ≥10° lateral spinal curvature (Cobb method) and comparator groups without AIS that measured PA were selected by 2 reviewers. DATA EXTRACTION: Data were extracted independently and cross-checked by 2 reviewers. Risk of bias was evaluated using Newcastle Ottawa Scales and overall confidence in the evidence using the GRADE approach. DATA SYNTHESIS: Sixteen studies with 9627 participants (9162, 95% women) were included. A history of vigorous PA significantly reduced the odds of being newly diagnosed with AIS by 24% (odds ratio [OR] 0.76, 95% confidence interval [CI] 0.65-0.89) (high certainty). Moderate PA reduced odds by 13% (moderate certainty) and light PA increased odds by 9% (low certainty), but neither analysis was statistically significant. Ballet or gymnastics (OR 1.47, 95% CI 3.08 (1.90, 5.00) were the only individual sports significantly associated with AIS diagnosis (moderate certainty). Case-control studies of people with and without AIS provided greater evidence that having AIS reduces vigorous PA and sports participation, and less evidence light PA and walking are affected. CONCLUSION: Adolescents who participate in more vigorous PA are less likely to be diagnosed with AIS. Ballet and gymnastics are associated with AIS diagnosis, but the direction of this association is uncertain. People with AIS are likely to do less vigorous physical and sporting activity compared with those without AIS, which could negatively affect health and quality of life. Further research is warranted into the inter-relations between PA and AIS, studies need to be of sufficient size, include men, and evaluate vigorous including higher-impact PA compared with moderate or light PA.

The experience of living with adolescent idiopathic scoliosis: a qualitative evidence synthesis using meta-ethnography.

BACKGROUND: Adolescent idiopathic scoliosis (AIS) is a common spinal deformity with physical and psychosocial implications for adolescents. The aim of this qualitative evidence synthesis (QES) was to systematically search for, identify, and synthesise qualitative research in order to improve our understanding of what it is like to live with AIS and to facilitate empathetic and effective healthcare. METHODS: We systematically searched 4 databases (Medline, EMBASE, PsycINFO and CINAHL) and used the 7 phases of meta-ethnography to synthesise qualitative evidence including studies with children and adolescents, and additional viewpoints from parents about the experience of AIS. RESULTS: We distilled 7 themes. (1) Diagnosis turned time on its head revolves around the AIS diagnosis and the uncertainty of the future that accompanied it. (2) Usual activities no longer the same explores how activities and participation in everyday life are impacted by AIS. (3) Hiding my body describes the pervasive struggle with self-image and appearance. (4) I want to feel normal again explores adolescents' desire to return to 'normality' and challenges of feeling different. (5) Balancing isolation and support considers the relationships in the adolescents' lives alongside their feelings of isolation. (6) Trying to keep control of treatment decisions explores how adolescents and their parents strive to feel in control. (7) Fearing surgery yet feeling hopeful focused on the apprehension and fear around spinal surgery and the beacon of hope it represented. CONCLUSIONS: Our QES contributes to the understanding of the adolescent experience of living with AIS. From our findings, clinicians can better understand the physical and psychosocial obstacles and the challenges faced throughout the journey of AIS to inform their clinical interactions with these patients.

An investigation into the relationship between nutritional status, dietary intake, symptoms and health-related quality of life in children and young people with juvenile idiopathic arthritis: a systematic review and meta-analysis.

BACKGROUND: The association between diet, symptoms and health related quality of life in children and young people with Juvenile idiopathic arthritis (JIA) is not clearly understood. The objectives of this systematic review and meta-analysis were to explore the evidence for a relationship between nutritional status, dietary intake, arthritis symptoms, disease activity and health-related quality of life in children and young people with JIA considering both observational and interventional studies separately. METHOD: The databases PubMed, CINAHL, PsycINFO, Web of Science and Cochrane were searched in October 2019, updated in September 2020 and October 2021. Searches were restricted to English language, human and age (2-18 years old). Studies were included if they measured the effect of dietary supplements, vitamins or minerals, or diet in general, on quality of life and/ or arthritis symptom management. Two researchers independently screened titles and abstracts. Full texts were sourced for relevant articles. PRISMA guidelines were used for extracting data. For variables (vitamin D and disease activity), a random-effects meta-analysis model was performed. Two authors using a standardized data extraction form, extracted data independently. RESULTS: 11,793 papers were identified through database searching, 26 studies met our inclusion criteria with 1621 participants. Overall studies quality were fair to good. Results from controlled trial and case control studies with total 146 JIA patients, found that Ɯ-3 PUFA improved the mean active joint count (p < 0.001), Juvenile Arthritis Disease Activity Score (JADAS-27) (p < 0.001) and immune system (≤ 0.05). Furthermore, n-3 and n-6 PUFAs have a negative correlation with CRP (C-reactive protein) and ESR (erythrocyte sedimentation rate) (p < 0.05). Improvement in JIA symptoms were observed in one case, one pilot and one exploratory study with overall 9 JIA patients after receiving Exclusive Enteral Nutrition (EEN) which contains protein and what is required for a complete nutrition, A clinical trial study found Kre-Celazine nutrition (composed of a proprietary alkali buffered, creatine monohydrate and fatty acids mixture) in 16 JIA patients improved symptoms of JIA. No association was found between vitamin D and disease activity from three studies. Height and weight values in relation to healthy controls varied across studies (p = 0.029). CONCLUSIONS: We were only able to include small studies, of lower design hierarchy, mainly pilot studies. We found some evidence of lower height and weight across studies in JIA, but were unable to confirm an association between diet, symptoms and health-related quality of life in children and young people with JIA. Well-designed, carefully measured and controlled interventional studies of dietary patterns in combination with important contributing factors such as medication and lifestyle behaviours, including physical activity, are required to determine the impact of diet in improving symptoms and growth patterns in children and young people with JIA, with an aim to improve the quality of their life. TRIAL REGISTRATION: PROSPERO [CRD42019145587].

Less pain reported 5 years after cementless compared to cemented unicompartmental knee replacement: an analysis of pain, neuropathy, and co-morbidity scores.

PURPOSE: To compare patient-reported pain scores and assess the influence of neuropathy and co-morbidity, on knee pain following cemented and cementless medial unicompartmental knee replacement (UKR) 5 years after surgery. METHOD: In this longitudinal study, 262 cemented and 262 cementless Oxford UKR performed for the same indications and with the same techniques were recruited. Patients were reviewed at five years, evaluating patient-reported pain and association with clinical outcomes. Intermittent and Constant Osteoarthritis Pain (ICOAP), PainDETECT (PD), Charnley score, Oxford Knee Score (OKS) and American Knee Society Score (AKSS) were compared. RESULTS: In both cohorts, intermittent pain was more common than constant pain (47% vs 21%). Cementless knees reported significantly less pain than cemented (ICOAP-Total 5/100 vs 11/100, p < 0.0001). A greater proportion of cementless knees experienced no pain at all (ICOAP = 0/100, 61% vs 43%, p < 0.0001) and 75% fewer experienced severe or extreme pain. Pain sub-scores in PD, OKS and AKSS follow this trend. Pain was unlikely to be neuropathic (PD positive: 5.26%), but patients reporting high levels of 'strongest' pain were three times more likely to be neuropathic. Patients with co-morbidities (Charnley C) experienced greater pain than those without (Charnley A+B) across all knee-specific scores, despite scores being knee specific. CONCLUSION: Both cemented and cementless UKR in this study had substantially less pain than that reported in literature following TKR. Cementless UKR had significantly less pain than cemented UKR in all scores. Two-thirds of patients with a cementless UKR had no pain at all at 5 years, and pain experienced was most likely to be mild and intermittent with no patients in severe or extreme pain. Patients with cementless UKR that had higher levels of pain were more likely to have co-morbidity or evidence or neuropathic pain. It is unclear why cementless UKR have less pain than cemented; further study is necessary.

Mutations in ALK signaling pathways conferring resistance to ALK inhibitor treatment lead to collateral vulnerabilities in neuroblastoma cells.

BACKGROUND: Development of resistance to targeted therapies has tempered initial optimism that precision oncology would improve poor outcomes for cancer patients. Resistance mechanisms, however, can also confer new resistance-specific vulnerabilities, termed collateral sensitivities. Here we investigated anaplastic lymphoma kinase (ALK) inhibitor resistance in neuroblastoma, a childhood cancer frequently affected by activating ALK alterations. METHODS: Genome-wide forward genetic CRISPR-Cas9 based screens were performed to identify genes associated with ALK inhibitor resistance in neuroblastoma cell lines. Furthermore, the neuroblastoma cell line NBLW-R was rendered resistant by continuous exposure to ALK inhibitors. Genes identified to be associated with ALK inhibitor resistance were further investigated by generating suitable cell line models. In addition, tumor and liquid biopsy samples of four patients with ALK-mutated neuroblastomas before ALK inhibitor treatment and during tumor progression under treatment were genomically profiled. RESULTS: Both genome-wide CRISPR-Cas9-based screens and preclinical spontaneous ALKi resistance models identified NF1 loss and activating NRASQ61K mutations to confer resistance to chemically diverse ALKi. Moreover, human neuroblastomas recurrently developed de novo loss of NF1 and activating RAS mutations after ALKi treatment, leading to therapy resistance. Pathway-specific perturbations confirmed that NF1 loss and activating RAS mutations lead to RAS-MAPK signaling even in the presence of ALKi. Intriguingly, NF1 loss rendered neuroblastoma cells hypersensitive to MEK inhibition. CONCLUSIONS: Our results provide a clinically relevant mechanistic model of ALKi resistance in neuroblastoma and highlight new clinically actionable collateral sensitivities in resistant cells.

Progressive exercise compared with best practice advice, with or without corticosteroid injection, for the treatment of patients with rotator cuff disorders (GRASP): a multicentre, pragmatic, 2 × 2 factorial, randomised controlled trial.

BACKGROUND: Corticosteroid injections and physiotherapy exercise programmes are commonly used to treat rotator cuff disorders but the treatments' effectiveness is uncertain. We aimed to compare the clinical effectiveness and cost-effectiveness of a progressive exercise programme with a single session of best practice physiotherapy advice, with or without corticosteroid injection, in adults with a rotator cuff disorder. METHODS: In this pragmatic, multicentre, superiority, randomised controlled trial (2 × 2 factorial), we recruited patients from 20 UK National Health Service trusts. We included patients aged 18 years or older with a rotator cuff disorder (new episode within the past 6 months). Patients were excluded if they had a history of significant shoulder trauma (eg, dislocation, fracture, or full-thickness tear requiring surgery), neurological disease affecting the shoulder, other shoulder conditions (eg, inflammatory arthritis, frozen shoulder, or glenohumeral joint instability), received corticosteroid injection or physiotherapy for shoulder pain in the past 6 months, or were being considered for surgery. Patients were randomly assigned (centralised computer-generated system, 1:1:1:1) to progressive exercise (≤6 sessions), best practice advice (one session), corticosteroid injection then progressive exercise, or corticosteroid injection then best practice advice. The primary outcome was the Shoulder Pain and Disability Index (SPADI) score over 12 months, analysed on an intention-to-treat basis (statistical significance set at 1%). The trial was registered with the International Standard Randomised Controlled Trial Register, ISRCTN16539266, and EuDRACT, 2016-002991-28. FINDINGS: Between March 10, 2017, and May 2, 2019, we screened 2287 patients. 708 patients were randomly assigned to progressive exercise (n=174), best practice advice (n=174), corticosteroid injection then progressive exercise (n=182), or corticosteroid injection then best practice advice (n=178). Over 12 months, SPADI data were available for 166 (95%) patients in the progressive exercise group, 164 (94%) in the best practice advice group, 177 (97%) in the corticosteroid injection then progressive exercise group, and 175 (98%) in the corticosteroid injection then best practice advice group. We found no evidence of a difference in SPADI score between progressive exercise and best practice advice when analysed over 12 months (adjusted mean difference -0·66 [99% CI -4·52 to 3·20]). We also found no evidence of a difference between corticosteroid injection compared with no injection when analysed over 12 months (-1·11 [-4·47 to 2·26]). No serious adverse events were reported. INTERPRETATION: Progressive exercise was not superior to a best practice advice session with a physiotherapist in improving shoulder pain and function. Subacromial corticosteroid injection provided no long-term benefit in patients with rotator cuff disorders. FUNDING: UK National Institute for Health Research Technology Assessment Programme.

Validity of the four-square step test in persons with haemophilia.

INTRODUCTION: Recurrent bleeds into joints causes arthropathy leading to pain and reduced joint movement. This may cause a reduction in postural balance and increase the falls risk in patients with haemophilia (PWH). With an ageing PWH population the need to assess functional balance in clinic will be essential to monitor function and implement interventions to help maintain balance and prevent falls. AIM: To assess the utility of the Four-Square Step Test (FSST) in PWH. METHODS: 80 PWH of all severity types were recruited and underwent a battery of outcome measures: FSST, Timed up & go (TUG), Short performance physical battery (SPPB), Haemophilia Activity List (HAL), ABC confidence questionnaire, and Haemophilia Joint Health score (HJHS). Demographics were collected, together with self-reported falls/trips history. RESULTS: All 80 participants were able to complete all test measures. Median age 44.5 years. Number of participants reporting falls ranged from 23% in severe to 3% in mild. Recent trips 53% severe to 17% mild. Excellent Inter and intra-reliability, ICC of .981 (CI .953-.992), P < .001 and ICC .989 (.983-.993) P < .001, respectively. Strong correlations between FSST and TUG/ SPPB .753 and -.728, moderate correlation between FSST and ABC/HAL -.484, -.464 P < .01. CONCLUSION: FSST is a valid and safe measure to use in PWH. It correlates strongly with other functional measures, has excellent inter and intra rater reliability. FSST correlates with age rather than severity type and provides information to the clinician on the speed/ability to change direction and clear an obstacle. ABC questionnaire was able to differentiate between severities and offers insight into patient confidence to move. SPPB had a ceiling effect with 52/80 scoring 12 and may not be suitable for PWH.

Experiences of urinary tract infection: A systematic review and meta-ethnography.

AIM: To understand the experience of urinary tract infection (UTI) by synthesizing primary qualitative research findings and developing a conceptual model that illustrates this experience. METHOD: A systematic search of Medline, PsychInfo, Embase, and CINAHL from inception to August 2020 to find qualitative research exploring the experience of UTI. Qualitative evidence synthesis in the form of meta-ethnography was undertaken. Findings are reported in keeping with eMERGe guidance. RESULTS: We included 16 qualitative studies in the synthesis of evidence, providing data from over 1038 participants aged 13-97 years. We developed nine themes: the impact of UTI on my whole body; impact on quality of life, activities, and the associated psychological toll; I know my body and my experience has taught me when I need to seek care; worry and the transition to medicalization; antibiotics are a valuable treatment approach; antibiotics are a last resort; being heard, seen, and cared for with dignity; self-judgment; and the end of the road, a need for information and cure. These themes supported a conceptual model to illustrate the patient experience of UTI. CONCLUSIONS: The conceptual model communicates the wide and varied symptoms of patients' UTI experiences and how they process this and make care decision based on past health experiences. For some, there appears to be a sense of hopelessness and frustration. This model may be used to highlight the need for improvements in diagnostic and treatment pathways. Future research to further understand the nuances of acute, recurrent, and persistent UTI is needed.

The challenges and gains of delivering a home-exercise intervention: a qualitative study of physiotherapists and physiotherapy assistants.

OBJECTIVES: The paper presents insights from the Community based Rehabilitation after Knee Arthroplasty (CORKA) trial. We aimed to explore physiotherapists and physiotherapy assistants' experiences of delivering a home-base exercise intervention following knee replacement surgery. We were particularly interested in the feasibility, potential benefits and barriers of a community-based exercise programme from the perspective of physiotherapists and physiotherapy assistants and to understand any constraints or training needs that arose.  DESIGN: Qualitative thematic analysis of semi-structured interviews.  SETTING: The Community based Rehabilitation after Knee Arthroplasty (CORKA) trial. PARTICIPANTS: Five physiotherapists and six physiotherapy assistants with a range of clinical experience. METHODS: Interviews were digitally recorded and transcribed verbatim. We used the stages of reflexive thematic analysis suggested by Braun and Clarke. One researcher conducted the interviewers whilst three researchers with experience in qualitative research methods contributed to the coding and analysis of data. RESULTS: We developed seven themes that help to understand the benefits and challenges of delivering treatment interventions in a person's home: seeing the person in their own world; thinking outside the cubicle;developing people skills; enjoying the above and beyond; treading a fine line between patient and friend; feeling outside my comfort zone; needing a support network. CONCLUSIONS: Treating people in their own homes facilitates a holistic approach. Our findings highlight areas for clinical education: (1) how do we help clinicians to tread the fine line between friend and professional (2) how do we balance the need to provide support and structure with the freedom to work creatively and independently?

Strong, steady and straight: UK consensus statement on physical activity and exercise for osteoporosis.

Exercise and physical activity can improve bone strength and the risk of falls, which may offer benefits in the prevention and management of osteoporosis. However, uncertainty about the types of exercise that are safe and effective instigates lack of confidence in people with osteoporosis and health professionals. Existing guidelines leave some questions unresolved. This consensus statement aimed to determine the physical activity and exercise needed to optimise bone strength, reduce fall and fracture risk, improve posture and manage vertebral fracture symptoms, while minimising potential risks in people with osteoporosis. The scope of this statement was developed following stakeholder consultation. Meta-analyses were reviewed and where evidence was lacking, individual studies or expert opinion were used to develop recommendations. A multidisciplinary expert group reviewed evidence to make recommendations, by consensus when evidence was not available. Key recommendations are that people with osteoporosis should undertake (1) resistance and impact exercise to maximise bone strength; (2) activities to improve strength and balance to reduce falls; (3) spinal extension exercise to improve posture and potentially reduce risk of falls and vertebral fractures. For safety, we recommend avoiding postures involving a high degree of spinal flexion during exercise or daily life. People with vertebral fracture or multiple low trauma fractures should usually exercise only up to an impact equivalent to brisk walking. Those at risk of falls should start with targeted strength and balance training. Vertebral fracture symptoms may benefit from exercise to reduce pain, improve mobility and quality of life, ideally with specialist advice to encourage return to normal activities. Everyone with osteoporosis may benefit from guidance on adapting postures and movements. There is little evidence that physical activity is associated with significant harm, and the benefits, in general, outweigh the risks.

Understanding the experience of living well, beyond the age of 85 years: a qualitative analysis using themes from a meta-ethnography.

BACKGROUND: Increase in life-expectancy is not necessarily matched by an increase in quality of life. OBJECTIVE: (1) To explore the quality of life of patients over the age of 85 in the second decade following unicompartmental knee replacement surgery (2) To understand the usefulness of a priori themes from an evidence synthesis as a framework for primary qualitative analysis. DESIGN: Qualitative Research. A hermeneutic phenomenological approach, using a priori themes as sensitising concepts. PARTICIPANTS: Adults over the age of 85 who were part of an outcomes study in the second decade following unicompartmental knee joint replacement. METHODS: Semi-structured interviews in people's homes. Transcripts were coded and data sorted using a priori themes as sensitising concepts. Data that did not fit these themes, or that added nuance, were analysed thematically through constant comparison. RESULTS: We interviewed seven white women and five white men, aged 85-100. Data resonated with a priori themes and supported additional themes that help us to understand older peoples' experience: (1) losing our autonomy can be challenging, so be kind; (2) we must take care of our own bodies and the NHS; (3) I am more afraid of not dying. CONCLUSIONS: Findings indicate that health outcomes for older people should incorporate measures of participation and well-being; they highlight the importance of kindness in healthcare; they indicate that older people do not want to place additional burden on the NHS, and this can act as a barrier to care; they support the need for open conversations about dying well.

A Healing Journey with Chronic Pain: A Meta-Ethnography Synthesizing 195 Qualitative Studies.

OBJECTIVE: There is a large body of research exploring what it means for a person to live with chronic pain. However, existing research does not help us understand what it means to recover. We aimed to identify qualitative research that explored the experience of living with chronic pain published since 2012 and to understand the process of recovery. DESIGN: A synthesis of qualitative research using meta-ethnography. METHODS: We used the seven stages of meta-ethnography. We systematically searched for qualitative research, published since 2012, that explored adults' experiences of living with, and being treated for, chronic pain. We used constant comparison to distill the essence of ideas into themes and developed a conceptual model. RESULTS: We screened 1,328 titles and included 195 studies. Our conceptual model indicates that validation and reconnection can empower a person with chronic pain to embark on a journey of healing. To embark on this journey requires commitment, energy, and support. CONCLUSIONS: The innovation of our study is to conceptualize healing as an ongoing and iterating journey rather than a destination. Health interventions for chronic pain would usefully focus on validating pain through meaningful and acceptable explanations; validating patients by listening to and valuing their stories; encouraging patients to connect with a meaningful sense of self, to be kind to themselves, and to explore new possibilities for the future; and facilitating safe reconnection with the social world. This could make a real difference to people living with chronic pain who are on their own healing journeys.

Physical activity levels in men with Haemophilia-A single centre UK survey.

INTRODUCTION: Historically persons with haemophilia (PWH) were not encouraged to participate in exercise due to the risk of bleeding and the lack of factor products available. This has now changed, and the availability of safe products allows PWH to be active and participate in sports. Studies have found that exercise has a positive effect on pain, joint health and movement with PWH. AIM: To record the amount and types of physical activity undertaken by a haemophilia population at a single treatment centre. METHODS: An observational cross-sectional study to assess physical activity and quality of life of all registered patients over the age of 18 at the Oxford Haemophilia and Thrombosis Centre. Participants were posted questionnaires including the International Physical activity Questionnaire (IPAQ), Haemophilia Activity List (HAL), EQ-5D-5L and asked to list their physical activities. RESULTS: A total of 256 questionnaires were sent, with a 40% response rate for severe and 28% for mild patients. 85% met the UK physical activity guidelines. Sedentary behaviour for an average weekday was 6.4 hours, and weekends were 5.3 hours. Joint disease and severity type influenced the amount of activity undertaken, together with values for HAL and EQ-5D-5L. Twenty two types of activities were listed. CONCLUSION: It is encouraging to see the amount of physical activity PWH participate in, however, time spent in a sedentary state needs monitoring. PWH want to be active and the challenge for caregivers is to find activities they can do and strategies to maintain participation.

A qualitative evidence synthesis using meta-ethnography to understand the experience of living with pelvic organ prolapse.

INTRODUCTION AND HYPOTHESIS: Pelvic organ prolapse (POP) affects the lives of many people. We aimed to systematically search for, identify and synthesize qualitative research that explores what it is like to live with POP and make this knowledge available for healthcare improvement. METHODS: We systematically searched Medline, PsychInfo, Embase and CINAHL, from inception to March 2020, for qualitative research exploring the experience of living with POP. We used meta-ethnography to synthesize findings. This is a conceptual approach to qualitative evidence synthesis. We used the recent guidelines for reporting meta-ethnography. RESULTS: We screened 3103 titles and 255 abstracts and included 37 primary studies. These incorporated the experience of 777 women, (aged 18 to 95 years) from a range of countries. We organized 162 ideas into 27 conceptual categories and 10 themes. We developed a conceptual model that helps us to understand the experience of pelvic organ prolapse. This model indicates that (1) the physical losses of POP are intricately linked to loss of identity; (2) women conceptualized POP as part of womanhood, yet also its thief; (3) there is a vicious cycle of taboo, silence and misunderstanding about POP and its treatment; (4) this silence is exacerbated by a feeling that POP is not taken seriously in healthcare. CONCLUSIONS: This meta-ethnography helps us to understand the experience of living with a POP. Our model illustrates the complex process of healthcare decision making. Further studies to explore the complexity of decision making from the perspective of patient and health professional are timely.

A meta-ethnography to understand the experience of living with urinary incontinence: 'is it just part and parcel of life?'

BACKGROUND: Urinary incontinence (UI) is highly prevalent and affects the lives of many men and women. We aimed to conduct a qualitative evidence synthesis (QES) to explore the experience of living with UI and to develop a conceptual model that can help us to understand this experience, and the potential barriers to appropriate healthcare. METHODS: We used the methods of meta-ethnography developed by Noblit and Hare and recently refined for larger studies. Meta-ethnography involves identifying concepts from the studies and abstracting these concepts into a line of argument. We searched for studies that explored the experience of adults with UI. We used the GRADE-CERQual framework to assess confidence in review findings. RESULTS: We screened 2307 titles, 429 abstracts, 107 full texts and included 41 studies (36 unique samples) in the synthesis. We organised the concepts into 26 conceptual categories, which we further abstracted into 6 themes: (1) Am I ill or is this normal? (2) It effects who I am and how I feel; (3) I feel stigmatised, ashamed and guilty; (4) talking can be difficult but it can help; (5) keeping incontinence under control; (6) have I got to the point that I need help? Our model conceptualises living with UI as navigating antagonists: Is UI normal or am I ill? Do I need help or am I managing? Do I keep UI to myself (and manage alone) or do I tell other people (and get the support that I need)? Do I use control strategies that focus on concealing (avoid risky situations, wear pads) versus, I use strategies that focus on improving the bodily function to improve continence. Our model highlights the experience of stigma, shame and guilt which exert a pull towards concealment. CONCLUSIONS: The culture of secrecy and profound sense of shame is barrier to seeking help. An environment which reduces the shame and stigma of UI may help people to switch the focus to strategies that will improve continence, rather than conceal incontinence.

The Experience of Living to an Extreme Age: A Meta-Ethnography.

Advances in health care mean that we can now treat diseases that once cut lives short. However, the increase in life expectancy has not been matched by improvements in quality of life. The World Health Organization warns us that all countries should prepare to meet the challenges of an aging population and this is integral to the United Nations 2030 Agenda for Sustainable Development. This may require a shift in attitude toward aging. We aimed to use meta-ethnography to explore the experience of adults living beyond the age of 80. Our conceptual model illuminates the phenomenon of connection in older age and reflects on the paradox of time: ephemeral, yet interminable. Our findings encourage us to reflect on the influence of enlightenment philosophies that underpin the desire for autonomy at all costs. Our study challenges the stereotypes of old age and has the potential to influence people's perspectives toward aging.

Rehabilitation after resurfacing hip arthroplasty: cost-utility analysis alongside a randomized controlled trial.

OBJECTIVE: To assess the costs, effects, and cost-utility of an accelerated physiotherapy programme versus a standard physiotherapy programme following resurfacing hip arthroplasty. DESIGN: A cost-utility analysis alongside a randomized controlled trial. SETTING: A UK National Health Service hospital and patients' homes. SUBJECTS: A total of 80 male resurfacing hip arthroplasty patients randomized post procedure to one of the two programmes. INTERVENTIONS: The accelerated physiotherapy programme commenced in hospital with patients being fully weight bearing, without hip precautions, and following a range of exercises facilitating gait re-education, balance, and lower limb strength. Standard physiotherapy commenced in hospital, but hip precautions were used and exercises were only partially weight bearing. In both groups, patients continued with their exercises at home for an eight-week period. MAIN MEASURES: Data on healthcare contacts were collected from patients to 12 months and costed using unit costs from national sources. Information was also collected on patients' costs. Health-related quality of life was measured using the EuroQol EQ-5D questionnaire and used to estimate quality-adjusted life years (QALYs) to 12 months. Mean costs and QALYs for each trial arm were compared. RESULTS: On average, the accelerated physiotherapy programme was less expensive (mean cost difference -£200; 95% confidence interval: -£656 to £255) and more effective (mean QALY difference 0.13; 95% confidence interval: 0.05 to 0.21) than standard physiotherapy and had a high probability of being cost-effective. CONCLUSION: From the National Health Service perspective, an accelerated physiotherapy programme for male patients undergoing revision of total hip arthroplasty (RHA) is very likely to be cost-effective when compared to a standard physiotherapy programme.