Understanding the well-being of children and young people with complex disabilities who use the Innowalk ©Made for Movement

Aims/ objectives Research question: How can the well-being of children and young people with complex disabilities be better understood, from using the Innowalk? Aims of the study: 1. To pilot, by observations, develop and evaluate an observational scale that enables well-being indicators to be recorded with children and young people with complex disabilities. 2. To obtain child and parental opinions by written diary records and an interview related to well-being, following them using the Innowalk. Methods A case study design was used1.Each case comprised measures, observational field notes, diaries and interviews with children, young people and their parents. Three visits were made to observe each child where field notes were written. These were then mapped onto the Be-Well checklist2 and PRIME-Observational scales3. The scales were analysed descriptively, the new observational well-being scale (WEBS) was piloted exploring the constructs of calmness, comfort, creativity, engagement, energy and joy in the participant’s behaviours. This was based upon doctoral research and a consultation group’s feedback4. Results Ten children (four male and six females) were recruited, mean age 11.9 years (range 4-18). Disabilities included cerebral palsy n=7, spina bifida n=2 and Rett’s syndrome n=1. The mean time in the Innowalk was 26.1 minutes (SD 6.3), mean distance travelled 1.9 km (SD 1.6) and the mean revolutions per minutes 39.9 (SD 3.1). The interview and diary data were analysed thematically5.Three themes were identified: Well-being: Mood and achievements; Participation: Anticipation and tolerance; Physical effects: Improved self-regulation and self-care. Conclusions This study suggests there were wellbeing effects from using the Innowalk, it is comfortable to use, creates an observable calmness, enables creativity to develop, and facilitates engagement with activities. Further testing of the WEBS scale is needed in a larger population in different contexts, to investigate content validity. An accessible illustrated storybook is being created for the participants

Understanding the well-being of children and young people with complex disabilities who use the Innowalk.

Researchers have not yet developed a valid and reliable measure of well-being for children with complex disabilities. Complex disabilities refer to those children with learning disabilities and complex needs such as those with cerebral palsy. This disability can make participation in physical activities harder, but the impact upon well-being is unknown. Well-being in this study refers to how children can indicate from their behaviours whether they are enjoying participation in the Innowalk, a robotic device. Consultation took place with disabled adults, children and young people and their parents, to discuss the domains of a proposed well-being scale. Based upon their contributions and previous doctoral research, well-being indicators included calmness, comfort, creativity, energy levels, engaging with others and expressing joy. Participants were observed in a special school context when using the Innowalk. The Innowalk is reported to have health and well-being benefits for non-ambulant people but is expensive to purchase and maintain. A case study series observed ten children, on three occasions when they participated in the Innowalk, for evidence indicating their well-being. Observational field notes were made, and these were mapped onto two existing scales the Be-Well checklist and PRIME-O, as well as the proposed new observational well-being scale (WEBS). The data were supported by their parents keeping a diary during this time, followed by interviews. The observational scales were analysed descriptively. Interview and diary data were analysed thematically, and three themes were identified: Well-being: Mood and achievements; Participation: Anticipation and tolerance; Physical effects: Improved self-regulation and self-care. The new WEBS scale is discussed and how well-being can fluctuate during a session, making this hard to contain or measure. The participants indicated that they enjoyed their experiences in the Innowalk, which supports existing research. What this study adds are the descriptors of aspects of well-being including comfort, calmness, creativity and engagement. Further work will be developed to explore staff perceptions of measuring well-being and to refine the WEBS scale on a larger population of disabled children, young people and young adults

Development of a Hyperbaric Oxygen Therapy service to treat people with long COVID in a community pharmacy setting (Final Report)

Background and rationale Long COVID is an umbrella term used to describe a range of symptoms, particularly chronic fatigue, ‘brain fog’ and dyspnoea, which persist for weeks, months or even years after an initial, acute COVID-19 infection. It is estimated that up to 20% of people diagnosed with acute COVID-19 will go on to develop long COVID. The pathology is unclear and, as yet there are no effective treatment options. Emerging evidence indicates that hyperbaric oxygen therapy (HBOT) may help to improve many key long COVID symptoms, in the short term. This study aims to undertake a pilot evaluation of HBOT for people affected by long COVID; to explore changes in chronic fatigue, shortness of breath and quality of life with 4 weeks of HBOT at 14.4 atmosphere absolute. Methods A purposive sample from the long COVID Facebook group were recruited. Participants received 15-20 HBOT sessions using a single person chamber over a consecutive four-week period. Socio-demographic information, long COVID symptoms and date of infection was recorded using a bespoke questionnaire. Validated outcome measures including: Chalder Fatigue Scale, Dyspnoea-12 Questionnaire (high scores = worse symptoms) and EQ-5D-L (high scores = better health) were completed at baseline, at weekly intervals over the 4 weeks of HBOT therapy and at 4 weeks after completing therapy. Data was analysed using descriptive statistics using SPSS 27. Five participants also took part in 2 separate, online focus groups to explore experiences of HBOT provision and subjective impact of therapy on long COVID symptoms. The focus groups were audio-recorded, transcribed verbatim and analysed thematically. Results Of the 10 participants recruited, 8 (7 females), age ranges from 26-35 to 56-65 years completed 4 weeks of HBOT. In the 6 people who had complete data, median (IQR) baseline v 4 week data was as follows: Fatigue 30 [28-32] v 22 [4-25], Dyspnoea 17 [6-22] v 4 [0-11], EQ-5D-L index 0.29 [0.07-0.49] v 0.60 [0.20-0.80] and EQ-5D-L VAS 40 [33-51] v 55 [49-73]. Participants reported a range of enduring, significance and fluctuating long COVID symptoms in the focus groups, including chronic fatigue, brain fog, joint pain and shortness of breath. Experiences of HBOT provision were positive but attending regular therapy sessions was often problematic, due to the ongoing challenges associated with long COVID. All reported a noticeable improvement in most of their bothersome symptoms and most participants also experienced a continued, gradual improvement in key symptoms in the 4 weeks since completing therapy. Conclusion HBOT has potential to improve symptoms in people with long COVID. Further controlled studies are urgently needed. Impact The use of HBOT to manage of long COVID symptoms may have an important impact on patients’ symptoms and quality of life

A simple and rapid test of physical performance in chronic obstructive pulmonary disease

Impaired physical performance is common in chronic obstructive pulmonary disease (COPD), but its assessment can be difficult in routine clinical practice. We compared the timed up and go (TUG) test and other easily applied assessments of physical performance with the 6-minute walk distance (6MWD). In a longitudinal study of comorbidities in COPD, submaximal physical performance was determined in 520 patients and 150 controls using the TUG test and 6MWD. Spirometry, body composition, handgrip strength, the COPD assessment test, St George’s Respiratory Questionnaire (SGRQ), and the modified Medical Research Council dyspnoea scale were also determined. Patients and controls were similar in age, body mass index, and sex proportions. The TUG in the patients was greater than that in the control group, P=0.001, and was inversely related to 6MWD (r=−0.71, P<0.001) and forced expiratory volume in one second predicted (r=−0.19, P<0.01) and was directly related to the SGRQ activity (r=0.39, P<0.001), SGRQ total (r=0.37, P<0.001), and total COPD assessment test scores (r=0.37, P<0.001). The TUG identified the difference in physical performance between patients and controls. The TUG test and validated questionnaires provide a measure of physical performance, which is rapid and could be used in clinical practice

Daily physical activity and related risk factors in COPD

Background Factors associated with reduced daily physical activity (DPA) in patients with COPD are still controversial. Physical inactivity in COPD increases risk of cardiovascular disease, frequent exacerbations, reduced health status, and increased symptoms. We hypothesised that reduced DPA in patients with COPD is independent of traditional risk factors including age and spirometry. Methods In this cross-sectional study, DPA (over 7 days) was assessed on 88 community stable patients with COPD and 40 controls free from cardiorespiratory disease. Spirometry, body composition, number of exacerbations, handgrip strength (HGS), modified Medical Research Council (mMRC), arterial stiffness, 6-min walking distance (6MWD) and BODE index were also determined. Frequent exacerbation was defined as ≥2 and non-frequent exacerbation < 2. Results Patients with COPD had reduced DPA and exercise capacity compared with controls similar in age, BMI and gender, p  0.05. The level of breathlessness was superior to lung function in predicting the level of DPA. Conclusion The level of DPA in COPD was independent of traditional risk factors. Breathlessness score is a better predictor of the DPA than lung function and handgrip strength

The promotion of homebased physical activity for people with lung and cancer cachexia, a qualitative study of healthcare professionals, patients and carers

Purpose There is some evidence of the benefits of physical activity (PA) in patients with lung cancer; however, there is a lack of understanding of acceptable PA for patients with established cachexia and how to facilitate sustainable behaviour change to promote PA. Therefore, this study explored the views of healthcare professionals (HP), patients with lung cancer and cachexia, and their carers on preferences for, barriers and facilitators of homebased PA. Methods This qualitative study involved ten telephone interviews with HPs and face-to-face interviews with seven patients with lung cancer and cachexia and their carers. Interviews were transcribed and analysed thematically. The Capability, Opportunity, Motivation and Behaviour (COM-B) model was used as a framework for the thematic cross-group analysis. Results The types of homebased PA suggested by patients with lung cancer and cachexia (n = 7), their carers (n = 7) and HPs (n = 10) were functional, flexible, individualised and initially of short duration and low intensity. PA was influenced by themes within physical and psychological Capability, physical and social Opportunities as well as automatic and reflective Motivation. Conclusion Based on a behaviour change theory, principles to promote homebased PA were developed. These principles need to be integrated into tools to promote PA in people with lung cancer and weight loss. Implications for Cancer Survivors The application of the proposed principles by clinicians will promote physical activity, enhancing the function and wellbeing of patients with lung cancer and reducing burden on carers. Introductio

Does pulmonary rehabilitation address cardiovascular risk factors in patients with COPD?

Background Patients with COPD have an increased risk of cardiovascular disease. Whilst pulmonary rehabilitation has proven benefit for exercise tolerance and quality of life, any effect on cardiovascular risk has not been fully investigated. We hypothesised that pulmonary rehabilitation, through the exercise and nutritional intervention, would address these factors. Methods Thirty-two stable patients with COPD commenced rehabilitation, and were compared with 20 age and gender matched controls at baseline assessment. In all subjects, aortic pulse wave velocity (PWV) an independent non-invasive predictor of cardiovascular risk, blood pressure (BP), interleukin-6 (IL-6) and fasting glucose and lipids were determined. These measures, and the incremental shuttle walk test (ISWT) were repeated in the patients who completed pulmonary rehabilitation. Results On commencement of rehabilitation aortic PWV was increased in patients compared with controls (p < 0.05), despite mean BP, age and gender being similar. The IL-6 was also increased (p < 0.05). Twenty-two patients completed study assessments. In these subjects, rehabilitation reduced mean (SD) aortic PWV (9.8 (3.0) to 9.3 (2.7) m/s (p < 0.05)), and systolic and diastolic BP by 10 mmHg and 5 mmHg respectively (p < 0.01). Total cholesterol and ISWT also improved (p < 0.05). On linear regression analysis, the reduction in aortic PWV was attributed to reducing the BP. Conclusion Cardiovascular risk factors including blood pressure and thereby aortic stiffness were improved following a course of standard multidisciplinary pulmonary rehabilitation in patients with COPD

Aortic Pulse Wave Velocity as a Measure of Cardiovascular Risk in Chronic Obstructive Pulmonary Disease: Two-Year Follow-Up Data from the ARCADE Study

Background and objectives: Cardiovascular (CV) disease is a major cause of morbidity and mortality in chronic obstructive pulmonary disease (COPD). Patients with COPD have increased arterial stiffness, which may predict future CV risk. However, the development of arterial stiffness in COPD has not yet been studied prospectively. The Assessment of Risk in Chronic Airways Disease Evaluation (ARCADE) is a longitudinal study of CV risk and other comorbidities in COPD. The aims of this analysis were to explore factors associated with aortic pulse wave velocity (aPWV) at baseline and to describe the progression of aPWV in patients with COPD and comparators over two years. Materials and methods: At baseline, 520 patients with COPD (confirmed by spirometry) and 150 comparators free from respiratory disease were assessed for body composition, blood pressure, aPWV, noninvasive measures of cardiac output, inflammatory biomarkers, and exercise capacity. This was repeated after two years, and mortality cases and causes were also recorded. Results: At baseline, aPWV was greater in COPD patients 9.8 (95% confidence interval (CI) 9.7–10) versus comparators 8.7 (8.5–9.1) m/s (p < 0.01) after adjustments for age, mean arterial pressure (MAP), and heart rate. Mean blood pressure was 98 ± 11 in COPD patients and 95 ± 10 mmHg in comparators at baseline (p = 0.004). After two years, 301 patients and 105 comparators were fully reassessed. The mean (95% CI) aPWV increased similarly in patients 0.44 (0.25–0.63) and comparators 0.46 (0.23–0.69) m/s, without a change in blood pressure. At the two-year follow-up, there were 29 (6%) deaths in COPD patients, with the majority due to respiratory causes, with an overall dropout of 43% of patients with COPD and 30% of comparators. Conclusions: This was the first large longitudinal study of CV risk in COPD patients, and we confirmed greater aPWV in COPD patients than comparators after adjustments for confounding factors. After two years, patients and comparators had a similar increase of almost 0.5 m/s aPWV

Effectiveness of low to moderate physical exercise training on the level of low-density lipoproteins: a systematic review

Background. Regular exercise reduces risk factors associated with cardiovascular disease (CVD). Elevated low-density lipoprotein (LDL) contributes to atherosclerosis formation, which is associated with an increased risk of CVD. The relationship between exercise therapy and lipid levels has been widely studied, but it is established that high-intensity exercise improves lipid profile. However, the effectiveness of low- to moderate-intensity exercise in altering LDL levels is controversial. This review aims to identify the current evidence and existing gaps in literature in this area. Methods. We searched and reviewed various randomized controlled clinical trials in the electronic databases EMBASE, CINAHL, the Web of Science, Cochrane, Pedro, Medline (PubMed), and Google Scholar using the keywords “low and moderate aerobic training,” “exercise”, “low-density lipoproteins,” “cholesterol,” “atherosclerosis,” and “coronary artery diseases markers.” We included studies that involved low- and/or moderate-intensity exercise training in apparently healthy adults over a period of 8 weeks and its effect on LDL levels. We selected a total of 11 studies from 469; nine were randomized controlled trials and two were systematic reviews. Results. Aerobic exercise of both low and moderate intensity resulted in a significant reduction of total cholesterol. Effects on low-density lipoprotein levels were significant, and most of the studies showed changes in the level without significant relation to the type of exercise. At the same time, exercise improved the health status and physical fitness of all the participants in the included studies. Conclusion. This study found that low- and moderate-intensity exercise and low-density lipoprotein levels were not proven to be significantly related, except in a few studies that were limited to dyslipidemia population