Using the Edinburgh Visual Gait Score to assess gait in children with cerebral palsy : a feasibility evaluation

Background/Aims: The aim of this study was to investigate the use and scope of observational gait analysis in every-day physiotherapy practice. The Edinburgh Visual Gait Score (EVGS) is proposed as a simple and cost-effective tool for use in every-day practice, when instrumented gait analysis (IGA) is not available. The primary goal was the evaluation of the feasibility of the use of the EVGS in the assessment of the gait of children with cerebral palsy (CP) and the second was to assess whether the EVGS was sensitive enough to note changes following intervention. Finally, the relationship between the EVGS scores and the 10m walk-test performance was examined. Methods: A feasibility study was conducted using the EVGS, the 10m walk-test and simplified video analysis software. Ten children with CP were recruited from two private physiotherapy practices in Greece. Findings: The EVGS was a quick and easy to use tool when assessing the gait pattern of children with CP. A Wilcoxon test showed a statistically significant improvement in the total EVGS score (left side: z= -2.395, p=0.017, right side: z=-2.392, p=0.017) following a two-month course of physiotherapy treatment. The Spearman’s correlation test showed no statistically significant correlation between the EVGS scores and the walking speed. Conclusions: It was feasible to use the EVGS in children with CP to assess the treatment outcome on gait parameters after intervention. It may be sensitive enough to note changes after two months of physiotherapy intervention. Our results indicate that the difference in movement quality does not always relate to walking speed. Future researchers should investigate the relationship between the two

Incidence and risk factors for patellofemoral dislocation in adults with Charcot-Marie-Tooth disease: An observational study

Background and Purpose: Patellofemoral (PF) dislocation is frequently encountered in clinical practice among people with Charcot-Marie-Tooth disease (CMT), but the frequency and risk factors for PF dislocation in adults with CMT are unknown. This study aimed to establish the incidence of PF dislocation in adults with CMT and to explore the risk factors associated with PF dislocation. Methods: This is a cross-sectional study involving adults with a diagnosis of CMT, attending their outpatient clinics at a specialist neuromuscular centre in the United Kingdom. Eighty-one individuals were interviewed about any PF dislocation and underwent a lower-limb assessment, with a focussed knee examination, to identify possible risk factors for PF dislocation. The incidence of PF dislocation was expressed as a percentage (number of individuals with a positive history of patellar dislocation/overall sample) and the association between different risk factors and PF dislocation was explored using logistic regression analysis. Results: The incidence of PF dislocation was 22.2% (18/81). PF dislocation was associated with a younger age at the time of the assessment (p = 0.038) and earlier disease onset (p = 0.025). All people bar two who dislocated had CMT1A (88.9%), but there was no difference in terms of CMT distribution with the non-dislocation group (p = 0.101). No association was found between PF dislocation and CMT severity measured by CMTSS (p = 0.379) and CMTES (p = 0.534). Patella alta (p = 0.0001), J-sign (p = 0.004), lateral patellar glide (p = 0.0001), generalised joint hypermobility (p = 0.001) and knee flexors weakness (p = 0.008) were associated with an increased risk of dislocation. Patella alta (p = 0.010) and lateral patellar glide (p = 0.028) were independent PF dislocation predictors. Conclusions: PF dislocation was common in this cohort with CMT and was associated with multiple risk factors. Future studies should be conducted to confirm the present findings so that the identified risk factors may be addressed by clinicians through preventive, supportive and corrective measures

The views and experiences of people with myeloma referred for autologous stem cell transplantation, who declined to participate in a physiotherapist-led exercise trial: a qualitative study

BACKGROUND: Recruitment rates to rehabilitation trials are variable among cancer survivors, and deeper investigation into the causes for declining participation is needed. The aim of this study was to qualitatively explore the experiences of people with myeloma referred for autologous stem cell transplant who were approached to take part in a physiotherapist-led exercise trial but declined. METHODS: Participants were asked to participate in this qualitative study after declining to participate in a trial conducted at a UK tertiary cancer center. Semi-structured interviews were conducted. Data was analyzed inductively using reflexive thematic analysis. RESULTS: Interviews from 18 myeloma patients (56% male, mean age 62 years) were analyzed. Four themes were identified: 1) Traveling to the specialist center is challenging, not just logistically; 2) Individualized approach valued but recall of research information variable; 3) Being less active has profound impact yet ameliorative support is lacking; and 4) Common side-effects of treatment are expected and endured but personal impact underestimated and unaddressed. CONCLUSION: A number of barriers to participation were identified. Travel, a commonly cited reason for declining research participation, is more than a logistical issue for cancer survivors experiencing side-effects and the time burden of clinical appointments. Expectation or knowledge of the typical side-effects from myeloma and its treatment may lead to under-reporting of concerns to care providers, despite their impact upon daily activities and quality of life. Approaches used for research recruitment should consider the timing and consequences of ongoing cancer treatment to reduce potential barriers to participation

The experience of falls and balance impairment for people with Charcot-Marie-Tooth disease

People with Charcot Marie Tooth disease (CMT) have impairments of balance and may fall more frequently than those without the condition. This qualitative study aimed to explore the experiences of falling and poor balance through focus group interviews. Participants were recruited through local and national meetings of the CMT United Kingdom support group. Three focus groups took place, including 25 adults with CMT in total. Thematic analysis revealed five main themes: frequent falling; cognitive burden of walking; environmental issues; external support; getting off the floor; perception of others. Participants described the physical issues of poor balance and falling, such as frequency, challenging physical environments and difficulty getting up after a fall. In addition, fear and embarrassment were discussed along with the impact on daily activities and participation. Physical and psychological factors need to be considered when designing falls management interventions for this group

"What I wanted to do was build myself back up and prepare": qualitative findings from the PERCEPT trial of prehabilitation during autologous stem cell transplantation in myeloma

BACKGROUND: The addition of qualitative methodology to randomised controlled trials evaluating complex interventions allows better understanding of contextualised factors and their potential influence on trial delivery and outcomes, as well as opportunities for feedback on trial participation to improve future trial protocols. This study explored the experiences of participation in cancer rehabilitation research during active cancer treatment. Participants were people living with haematological cancer myeloma, undergoing autologous stem cell transplantation (ASCT) recruited to the PERCEPT myeloma pilot trial. METHODS: A qualitative semi-structured interview study, embedded within a pilot randomised controlled trial of a physiotherapist-led exercise intervention delivered before, during and after ASCT among people living with myeloma. Transcripts were analysed using reflexive thematic analysis. RESULTS: Interviews from 16 trial participants (n = 8 intervention group; n = 8 control group; mean age 61 years, 56% male) were analysed. Four main themes were identified: (1) "It's not just beneficial for me, it's for people after me as well"; (2) Disparities in experience of recovery - expectations, feeling prepared and support; (3) "What I wanted to do was build myself back up and prepare"; (4) Active ingredients - participants' experience of the trial intervention. Participants reported both altruistic and perceived personal gain as motivators for enrolling in the trial. Disappointment caused by allocation to control arm may have led to participants seeking exercise elsewhere, indicating possible contamination of control condition. Disparities in experience of recovery from transplant were evident with intervention participants reporting greater trajectory of recovery. CONCLUSIONS: The findings from this embedded qualitative study highlight numerous considerations required when designing pilot and efficacy trials of complex interventions. The addition of qualitative investigation offers greater understanding of motivations for participation, intervention mechanisms at play as well as effects of participation that may impact interpretation of quantitative outcomes. TRIAL REGISTRATION: Qualitative findings from a prospectively registered pilot trial (ISRCTN15875290), registered 13/02/2019

Exercise prehabilitation for people with myeloma undergoing autologous stem cell transplantation: results from PERCEPT pilot randomised controlled trial

BACKGROUND: Autologous stem cell transplant (ASCT) is first line treatment for newly diagnosed patients with myeloma but often results in functional deficits and reduced quality of life (QOL). Physically active myeloma patients have better QOL, less fatigue and reduced morbidity. This trial aimed to investigate the feasibility of a physiotherapist-led exercise intervention delivered across the continuum of the myeloma ASCT pathway at a UK centre. Initially designed and delivered as a face-to-face trial, the study protocol was adapted to virtual delivery in response to the COVID-19 pandemic. MATERIAL AND METHODS: A pilot randomised controlled trial of a partly supervised exercise intervention with incorporated behaviour change techniques delivered before, during and for 3 months following ASCT compared to usual care. Face-to-face delivery of the pre-ASCT supervised intervention was adapted to virtually-supervised group classes via video conferencing. Primary outcomes related to feasibility; recruitment rate, attrition and adherence. Secondary outcomes included patient reported measures of QOL (EORTC C30, FACT-BMT, EQ5D), and fatigue (FACIT-F), measures of functional capacity (six-minute walk test (6MWT), timed sit-to-stand (TSTS), hand grip strength, self-reported and objective physical activity (PA). RESULTS: Over 11 months 50 participants were enrolled and randomised. Overall, uptake to the study was 46%. The attrition rate was 34%, mainly related to failure to undergo ASCT. Loss of follow-up for other reasons was low. Secondary outcomes demonstrate potential for the benefit of exercise prior to, during and after ASCT with improvements in QOL, fatigue, functional capacity and PA evident on admission for ASCT and 3 months post-ASCT. DISCUSSION: Results indicate acceptability and feasibility of delivering exercise prehabilitation, in person and virtually within the ASCT pathway in myeloma. The effects of prehabilitation and rehabilitation provision as a component of the ASCT pathway warrants further investigation

Adaptation of the PERCEPT myeloma prehabilitation trial to virtual delivery: changes in response to the COVID-19 pandemic

Introduction and objective Research activity was impacted by the novel COVID-19 pandemic, the PERCEPT myeloma trial was no exception. This pilot randomised trial delivered a face-to-face exercise intervention prior to and during autologous stem cell transplantation (ASCT) in myeloma patients, as a consequence of COVID-19 it required significant adaptions to continue. This brief communication describes how the previously published study protocol was adapted for virtual delivery. In addition, we highlight the challenge of continuing the study which was embedded within a clinical pathway also impacted by the pandemic. Summary The original trial protocol was amended and continued to recruit and deliver an exercise prehabilitation intervention virtually. Continued delivery of the intervention was deemed important to participants already enrolled within the trial and the adapted virtual version of the trial was acceptable to the research ethics committee as well as participants. Development of effective, remotely delivered rehabilitation and physical activity programmes are likely to benefit people living with myeloma. The COVID-19 pandemic provided an opportunity to explore the feasibility of a virtual programme for ASCT recipients, however, continued changes to the clinical pathway within which the study was embedded posed the greatest challenge and ultimately led to early termination of recruitment. Trial registration number ISRCTN15875290; pre-result

Systematic review of the evidence on orthotic devices for the management of knee instability related to neuromuscular and central nervous system disorders

Objectives To assess the effectiveness of orthotic devices for the management of instability of the knee in adults with a neuromuscular disorder or central nervous system disorder. Design A systematic review of primary studies. Setting Community. Participants Adults with a neuromuscular disorder or central nervous system disorder and impaired walking ability due to instability of the knee. Interventions Orthoses with the clinical aim of controlling knee instability, for example, knee-ankle-foot orthoses, ankle-foot orthoses and knee orthoses or mixed design with no restrictions in design or material. Primary and secondary outcome measures Conditionspecific or generic patient-reported outcome measures assessing function, disability, independence, activities of daily living, quality of life or psychosocial outcomes; pain; walking ability; functional assessments; biomechanical analysis; adverse effects; usage; patient satisfaction and the acceptability of a device; and resource utilisation data. Results Twenty-one studies including 478 patients were included. Orthotic devices were evaluated in patients with postpolio syndrome, poststroke syndrome, inclusion body myositis and spinal cord injury. The review included 2 randomised controlled trials (RCTs), 3 non-randomised controlled studies and 16 case series. Most were small, single-centre studies with only 6 of 21 following patients for 1 year or longer. They met between one and five of nine quality criteria and reported methods and results poorly. They mainly assessed outcomes related to gait analysis and energy consumption with limited use of standardised, validated, patient-reported outcome measures. There was an absence of evidence on outcomes of direct importance to patients such as reduction in pain and falls. Conclusions There is a need for high-quality research, particularly RCTs, of orthotic devices for knee instability related to neuromuscular and central nervous system conditions. This research should address outcomes important to patients. There may also be value in developing a national registr