Physiotherapy interventions for pain management in haemophilia: A systematic review

Purpose: Approximately 35%-50% of people with haemophilia (PWH) report living with chronic musculoskeletal pain. Although exercise based rehabilitation is effective for pain in other arthritises, there are no published guidelines for management of chronic pain in PWH. This review aims to evaluate and appraise the current evidence of effectiveness of physiotherapy interventions on (a) pain intensity, (b) quality of life (QoL) and (c) function in PWH. Methods: A systematic review of five databases AMED and CINAHL, EMBASE and MEDLINE and PEDro, as well as trial registries, grey literature and hand searching key journals was completed. Included studies were critically appraised and evaluated for risk of bias. The GRADE approach was used to rate the quality of the evidence. Results: Nine trials consisting of 235 participants met the inclusion criteria. All studies had an overall risk of bias with low methodological quality. Meta-analysis was not possible due to heterogeneity across trials. Studies comparing a range of physiotherapy interventions against no intervention showed no clear beneficial effect on pain intensity or QoL. Only one study, investigating hydrotherapy or land-based exercise against control, showed positive effect for pain intensity, but rated very low on GRADE assessment. Studies comparing one physiotherapy intervention against another showed no clear benefit on pain intensity, QoL or function. LASER with exercise and hydrotherapy were shown to have some positive effects on pain intensity, but no clear benefit on function. Conclusions: At present, there is limited evidence for the use of physiotherapy interventions in addressing the issue of pain in PWH. Better designed trials with higher quality and explicit methodology along with user involvement are needed to assess the efficacy of any proposed intervention

How does a lifetime of painful experiences influence sensations and beliefs about pain in adults with severe haemophilia? A qualitative study

Purpose: To explore the life experiences of pain in people with severe haemophilia and understand how such experiences influence beliefs and sensation of pain in adulthood. Methods: A qualitative inquiry approach using focus groups and semi-structured individual interviews was used. Participants included people with severe haemophilia living with chronic pain. Data were analysed using reflexive thematic analysis. Results: Fourteen men with a median age of 47 (range 23–73) agreed to take part. Eleven participated in two focus groups and three were interviewed over telephone. Two themes were conceptualised from the data: (i) haemophilia and pain – an evolving life biography (the personal narrative, historical, social, and medical context, continuous adaptation of activity choices, surveillance of pain and its meaning); (ii) “My normal isn’t normal” – identity and self-agency (pain as a feature of life and identify with severe haemophilia, loss of enjoyable activities balanced against staying active, barriers to participation). Conclusions: Pain is a constantly evolving, lifetime feature for many adults with haemophilia and it is viewed as part of their identity with their condition. Healthcare professionals working in haemophilia should try to better understand the influence of an individuals lived experience with their haemophilia on beliefs and behaviours of pai

The experiences and beliefs of people with severe haemophilia and healthcare professionals on pain management, and their views of using exercise as an aspect of intervention: a qualitative study

Purpose: To explore the experiences, views and beliefs of people with severe haemophilia and healthcare professionals (HCPs) on approaches for pain management, as well as their views on exercise being used as an aspect of management. Methods: Taking a qualitative inquiry approach using focus groups and semi-structured interviews, participants included people with severe haemophilia living with chronic pain and haemophilia HCPs. Data were analysed using reflexive thematic analysis. Results: Fourteen men with haemophilia with a median age of 47 (range 23–73) and six haemophilia HCPs agreed to participate. Of the people with haemophilia, 11 attended two focus groups and three were interviewed over telephone. Healthcare professionals were interviewed face-to-face. Two themes were conceptualised from the data: (i) haemophilia management and pain management is discordant (imbalance between good haemophilia care but poor pain management, historical medico-social influences on pain management, the need for trust); (ii) uncertain about exercise but clear on what matters (conflicting views on exercise, the need for proof of safety, personalised care). Conclusions: Options for effective pain management remain limited and what is used is heavily influenced by beliefs and experience. Exercise as a treatment option in pain management is conceptually acceptable for people with haemophilia. Effective pain management requires understanding of individual beliefs and fears, and a personalised approach supported by knowledgeable, trusted clinicians

The importance of cancer patients' functional recollections to explore the acceptability of an isometric-resistance exercise intervention: A qualitative study

Background and Aims: Although it has been widely recognized the potential of physical activity to help cancer patients' preparation for and recovery from surgery, there is little consideration of patient reflections and recovery experiences to help shape adherence to exercise programs. The aim was to explore the acceptability of our newly proposed isometric exercise program in a large general hospital trust in England providing specialist cancer care by using patient recollections of illness and therapy prior to undertaking a randomized controlled trial. Methods: Four Focus groups (FGs) were conducted with cancer survivors with an explicit focus on patient identity, functional capacity, physical strength, exercise advice, types of activities as well as the timing of our exercise program and its suitability. Thematic framework analysis was used with NVivo 11. Results: FG data was collected in January 2016. A total of 13 patients were participated, 10 were male and 3 were female with participants' ages ranging from 39 to 77. Data saturation was achieved when no new information had been generated reaching “information redundancy.” Participants reflected upon their post-surgery recovery experiences on the appropriateness and suitability of the proposed intervention, what they thought about its delivery and format, and with hindsight what the psychological enablers and barriers would be to participation. Conclusion: Based upon the subjective recollections and recovery experiences of cancer survivors, isometric-resistance exercise interventions tailored to individuals with abdominal cancer has the potential to be acceptable for perioperative patients to help increase their physical activity and can also help with emotional and psychological recovery

Exercise-based telerehabilitation for the management of chronic pain in people with severe haemophilia: a mixed-methods feasibility study.

Background: Chronic pain is reported by between 30 and 71% of people with haemophilia (PWH). Exercise is shown to be effective for pain management in other arthritis’s, but it remains unclear if such an approach is effective or acceptable to PWH. The aim of this study was to evaluate the feasibility and acceptability of a telerehabilitation exercise intervention for PWH living with chronic pain. Methods: This was a multisite, non-randomised, pre-post feasibility design, with a nested qualitative study. People with severe haemophilia>18 years, living with chronic pain, were recruited. The intervention comprised 12 low-impact/moderate intensity, individualised exercise sessions and 3 knowledge-sharing and discussion sessions. Primary objectives assessed according to predefined progression criteria were as follows: (a) recruitment rate (5 participants enrolled per site over 8 weeks), (b) adherence (≥75% participants would adhere to≥75% of sessions), (c) follow-up rate (≥75% completion of self-reported measures), (d) fidelity (intervention delivered as described in protocol) and (e) safety (≤30% participants would report adverse events). Acceptability was evaluated from thematic analysis of post-intervention participant interviews. Preliminary evaluation of self-reported pain, function and quality of life (QoL) was a secondary objective. Results were reported using descriptive statistics integrated with qualitative findings. Results: Ten PWH were recruited and completed the intervention. Nine agreed to be interviewed post intervention. Attendance at individual sessions was 84.5% compared to 52.1% for the group sessions. Outcome measures were successfully completed for 100% at baseline, 70% at intervention end and 60% at 3-month follow-up. No serious adverse events were recorded. Group median values in outcome measures (pain, function, QoL) showed minimal change post intervention. Participant interviews highlighted high levels of enjoyment, confidence in continuing exercises independently and positive views of virtual delivery and condition-specific exercise. Conclusions: Recruitment rate and safety met the predefined progression criteria. Fidelity partially met the progression criteria, but the follow-up rate for self-reported measures did not. The study was acceptable to both participants and physiotherapists. Further intervention development is needed to review approaches to outcome measure collection and refine the usefulness of the knowledge-sharing sessions

Using theory of change to co-create a programme theory for a telerehabilitation intervention for pain management in people with haemophilia

Background Improved approaches for chronic pain management are a clinical and research priority for people with haemophilia (PWH). Involving people with lived experience in the design of a complex rehabilitation intervention strengthens the credibility and plausibility of the intervention, particularly in relation to rare disorders. Here we describe using a ‘Theory of Change’ (ToC) dialogue-based stakeholder process to create a programme theory for a telerehabilitation intervention. Methods An online workshop was convened and stakeholders received a briefing document in advance. Five stakeholders took part (3 PWH and 2 physiotherapists). At the workshop the group first agreed the overall aim of the intervention. Discussions then identified the resources, activities, barriers and enablers needed to achieve this outcome. All discussions were recorded and annotated by the workshop moderator. Behaviour change techniques were mapped for inclusion in the theory. Results A programme theory and narrative report were produced. All stakeholders reviewed these for clarity and to ensure a true refection of the workshop discussions. Agreement was based on how meaningful, well-defined, do-able, plausible, credible, and testable each component was. Stakeholders highlighted the importance of issues unique to PWH. Key components included the need for physiotherapists to be knowledgeable of the condition, a range of exercises that were inclusive of all abilities, and the need for people to feel safe and supported whilst taking part. Conclusions Co-developed theory based approaches to intervention design offer an inclusive and transparent way to develop novel and meaningful interventions for people with complex health conditions. The ToC is wholly transparent in its design and content. Together with the identified behaviour change techniques, the theory informs the protocol for a feasibility study evaluating a telerehabilitation intervention. Importantly, it allows the opportunity to revise, adapt and improve the programme theory for further implementation and evaluatio

A multidisciplinary approach to optimising the virtual management of haemophilia: a roundtable meeting of UK experts

The necessity of a multidisciplinary team (MDT) approach in haemophilia care is well recognised globally, with international guidelines advocating this. Prior to the coronavirus disease 2019 pandemic, virtual MDT haemophilia care was gaining support worldwide. However, the pandemic necessitated the rapid implementation of innovative virtual solutions to ensure continued access to multidisciplinary care. A multidisciplinary panel of healthcare professionals who specialise in haemophilia care in the United Kingdom gathered to discuss the following: the current landscape of haemophilia MDT care and best practices, the benefits, challenges, and opportunities for virtual MDT care, managing bleeds remotely, virtual paediatric care, and the future of virtual MDT care. The consensus was that virtual MDT care is widely used, however formats vary depending on the healthcare setting, available resources, MDT preferences, and local policy. Advisors agreed that virtual MDT care has several benefits, such as improved convenience/choice for their patients and wider patient reach. However, many patient-specific and logistical challenges exist. Hybrid care models may provide an opportunity to overcome these challenges. The decision on how bleeds are managed (virtually versus face-to-face) depends on provider preference, the patient-provider relationship, and the patient’s disease severity, history, and ability to self-manage. As such, this should be assessed on a case-by-case basis. Virtual tracking tools cannot be solely relied upon for MDT decision making as patient accuracy cannot be ascertained. The MDT composition for paediatric care should be tailored to the patients’ and their parents’/caregivers’ needs. Lastly, hybridised care will likely be adopted for future haemophilia management and will facilitate the advancement of MDT car

European principles of care for physiotherapy provision for persons with inherited bleeding disorders: Perspectives of physiotherapists and patients

Introduction: In their Chronic Care Model, the World Health Organisation states that people with chronic disorders and their families should be informed about the expected course, potential complications, and effective strategies to prevent complications and manage symptoms. Physiotherapists are a key professional group involved in the triage, assessment and management of musculoskeletal conditions of persons with a bleeding disorder (PWBD). Nevertheless, recent reports describe access to physiotherapy for those with these conditions is only sometimes available. Aim: Access to high quality individualised physiotherapy should be ensured for all PWBD, including those with mild and moderate severities, male and female, people with von Willebrand Disease (vWD) and other rare bleeding disorders. Physiotherapy should be viewed as a basic requisite in their multidisciplinary care. Methods/ results: Following a series of meetings with physiotherapists representing the European Association for Haemophilia and Allied Disorders (EAHAD) and PWBD representing the European Haemophilia Consortium (EHC) and a review of publications in the field, eight core principles of physiotherapy care for persons with a bleeding disorder have been co-produced by EAHAD and EHC. Conclusion: These eight principles outline optimum standards of practice in order to advocate personalised patient-centred care for physical health in which both prevention and interventions include shared decision making, and supported self-management

ρ\rho - nucleus bound states in Walecka model

Possible formation of $\rho$ nucleus bound state is studied in the framework of Walecka model. The bound states are found in different nuclei ranging from $^3He$ to $^{208}Pb$. These bound states may have a direct bearing on the recent experiments on the photoproduction of $\rho$ meson in the nuclear medium.Comment: RevTeX fil

Screening and social prescribing in healthcare and social services to address housing issues among children and families: a systematic review

Objectives Housing is a social determinant of health that impacts the health and well-being of children and families. Screening and referral to address social determinants of health in clinical and social service settings has been proposed to support families with housing problems. This study aims to identify housing screening questions asked of families in healthcare and social services, determine validated screening tools and extract information about recommendations for action after screening for housing issues. Methods The electronic databases MEDLINE, PsycINFO, EMBASE, Ovid Emcare, Scopus and CINAHL were searched from 2009 to 2021. Inclusion criteria were peer-reviewed literature that included questions about housing being asked of children or young people aged 0-18 years and their families accessing any healthcare or social service. We extracted data on the housing questions asked, source of housing questions, validity and descriptions of actions to address housing issues. Results Forty-nine peer-reviewed papers met the inclusion criteria. The housing questions in social screening tools vary widely. There are no standard housing-related questions that clinical and social service providers ask families. Fourteen screening tools were validated. An action was embedded as part of social screening activities in 27 of 42 studies. Actions for identified housing problems included provision of a community-based or clinic-based resource guide, and social prescribing included referral to a social worker, care coordinator or care navigation service, community health worker, social service agency, referral to a housing and child welfare demonstration project or provided intensive case management and wraparound services. Conclusion This review provides a catalogue of housing questions that can be asked of families in the clinical and/or social service setting, and potential subsequent actions