Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome.

Post-exertional symptom exacerbation (PESE) is a characteristic symptom of post-COVID syndrome (PCS). This prospective study investigated the effect of a 6-week structured World Health Organization (WHO) Borg CR-10 5-phase pacing protocol on PESE episodes and quality of life in a cohort of individuals with long-standing PCS (average duration of symptoms was 17 months). Participants received weekly telephone calls with a clinician to complete the Leeds PESE questionnaire (LPQ) and identify the appropriate phase of the pacing protocol. EQ-5D 5L was completed at the intervention's beginning and end to measure overall health. Thirty-one participants completed the 6-week protocol, with a statistically and clinically significant reduction in the average number of PESE episodes (from 3.4 episodes in Week 1 to 1.1 in Week 6), with an average decrease of 16% (95% CI: 9%-24%; p < 0.001) each week, and reduction across all three exertional triggers (physical, cognitive, and emotional). Physical activity levels showed moderate improvements during the intervention period. Mean EQ-5D 5L scores improved from 51.4 to 60.6 points (paired difference of 9.2 points, 95% CI: 3.2-15.2 points; p = 0.004). A structured pacing protocol significantly reduces PESE episodes and improves overall health in PCS.

A Mixed-Methods Evaluation of a Virtual Rehabilitation Program for Self-Management in Post-COVID-19 Syndrome (Long COVID).

Long COVID (LC) symptoms can be long standing, diverse and debilitating; comprehensive multidisciplinary rehabilitation programs are required to address this. A 10-week LC Virtual Rehabilitation Program (VRP) was developed to provide early education and self-management techniques to address the main symptoms of LC and was delivered to a group of persons with Long COVID (PwLC) online, facilitated by members of the multi-disciplinary rehabilitation team. This paper describes an evaluation of this VRP. Questionnaires completed by Healthcare Professionals (HCP) delivering the VRP were thematically analyzed to gain a priori themes and design semi-structured telephone interview questions for PwLC. Template analysis (TA) was used to analyze interview data. Routinely collected patient demographics and service data were also examined. Seventeen HCP survey responses were obtained and 38 PwLC telephone questionnaires were completed. The HCP interviews generated three a priori themes (1. Attendance and Availability, 2. Content, 3. Use of Digital Technology). TA was applied and three further themes emerged from the combined HCP and PwLC responses (4. Group Dynamics, 5. Individual Factors, 6. Internal Change). Key outcomes demonstrated that: the VRP was highly valued; digital delivery enabled self-management; barriers to attendance included work/life balance, use of technology, health inequalities; and LC was poorly understood by employers. Recommendations are provided for the design of VRPs for LC.

A systematic review and narrative synthesis of footwear and orthotic devices used in the management of ankle haemarthrosis and haemarthropathy in haemophilia.

INTRODUCTION: Haemarthrosis is a clinical feature of haemophilia leading to haemarthropathy. The ankle joint is most commonly affected, resulting in significant pain, disability and a reduction in health-related quality of life. Footwear and orthotic devices are effective in other diseases that affect the foot and ankle, such as rheumatoid arthritis, but little is known about their effect in haemophilia. AIMS: To review the efficacy and effectiveness of footwear and orthotic devices in the management of ankle joint haemarthrosis and haemarthropathy in haemophilia. METHODS: A systematic literature review was conducted. Two review authors independently screened studies for inclusion and appraised methodological quality using Joanna Briggs Institute Critical Appraisal checklists. A narrative analysis was undertaken. RESULTS: Ten studies involving 271 male participants were eligible for inclusion. All studies were quasi-experimental; three employed a within-subject design. Two studies included an independent comparison or control group. A range of footwear and orthotic devices were investigated. Limited evidence from non-randomised studies suggested that footwear and orthotic devices improve the number of ankle joint bleeding episodes, gait parameters and patient-reported pain. CONCLUSION: This review demonstrates a lack of robust evidence regarding the efficacy and effectiveness of footwear and orthotic devices in the management of ankle joint haemarthrosis and haemarthropathy in haemophilia. Methodological heterogeneities and limitations with the study designs, small sample sizes and limited follow-up of participants exist. Future studies utilising randomised designs, larger sample sizes, long-term follow-up and validated patient-reported outcome measures are needed to inform the clinical management of ankle joint haemarthrosis and haemarthropathy.

Expert opinion on the UK standard of care for haemophilia patients with inhibitors: a modified Delphi consensus study.

BACKGROUND AND AIMS: Despite advances in haemophilia care, inhibitor development remains a significant complication. Although viable treatment options exist, there is some divergence of opinion in the appropriate standard approach to care and goals of treatment. The aim of this study was to assess consensus on United Kingdom (UK) standard of care for child and adult haemophilia patients with inhibitors. METHODS: A modified Delphi study was conducted using a two-round online survey. A haemophilia expert steering committee and published literature informed the Round 1 questionnaire. Invited participants included haematologists, haemophilia nurses and physiotherapists who had treated at least one haemophilia patient with inhibitors in the past 5 years. Consensus for 6-point Likert scale questions was pre-defined as ⩾70% participants selecting 1-2 (disagreement) or 5-6 (agreement). RESULTS: In all, 46.7% and 35.9% questions achieved consensus in Rounds 1 (n = 41) and 2 (n = 34), respectively. Consensus was reached on the importance of improving quality of life (QoL) and reaching clinical goals such as bleed prevention, eradication of inhibitors and pain management. There was agreement on criteria constituting adequate/inadequate responses to immune tolerance induction (ITI) and the appropriate factor VIII dose to address suboptimal ITI response. Opinions varied on treatment aims for adults and children/adolescents, when to offer prophylaxis with bypassing agents and expectations of prophylaxis. Consensus was also lacking on appropriate treatment for mild/moderate patients with inhibitors. CONCLUSION: UK healthcare professionals appear to be aligned on the clinical goals and role of ITI when managing haemophilia patients with inhibitors, although novel treatment developments may require reassessment of these goals. Lack of consensus on prophylaxis with bypassing agents and management of mild/moderate cases identifies a need for further research to establish more comprehensive, evidence-based treatment guidance, particularly for those patients who are unable/prefer not to receive non-factor therapies.