An Audit of disabled children’s services – what value is MPOC-SP?

Introduction: Achieving high standards of health care provision with children and young people with a disability requires a focus on Family Centred Care. To audit this type of provision there are a range of tools available. The Measure of the Processes of Care for Service Providers is a questionnaire, which enables evaluation of Family Centred Care. The aim of this study was to explore staff and parental experiences of Family Centred Care Method: The study utilized a mixed methodology. Quantitative data was gathered from administration of the questionnaire with staff. A series of interviews and focus groups based around the themes from the questionnaire were also conducted with staff and parents of disabled children. The questionnaire data were analyzed with SPSS 16 for descriptive statistics. Interview and focus group data were analyzed using a template and editing approach Results and conclusions: The mean of ‘interpersonal sensitivity’ was 5.35 and ‘respect’ 5.74 compared to ‘providing general information’ 4.34 and ‘communicating’ 4.96. Staff commented on the value of the questionnaire as a self- reflective tool. The qualitative data provided deeper insight into this area of practice. The questionnaire alone would provide limited data as part of an audit of disabled children’s services

Integrating self-management support for knee injuries into routine clinical practice: TRAK intervention design and delivery

Background TRAK is a web-based intervention that provides knee patients with health information, personalised exercise plans and remote clinical support. The aim of this study was to fully define TRAK intervention content, setting and context and develop the training through an implementation study in a physiotherapy out-patient service. Methods A mixed methods study. Phase 1 was a qualitative interview study, whereby fifteen physiotherapists used TRAK for 1 month with a patient of their choice. Interviews explored patient and physiotherapist views of TRAK intervention and training requirements. In Phase 2 seventy-four patients were recruited, all received conventional physiotherapy, a subset of 48 patients used TRAK in addition to conventional Physiotherapy. Aspects of feasibility measured included: uptake and usage of TRAK. Results Patients and physiotherapists reported that TRAK was easy to use and highlighted the therapeutic benefit of the exercise videos and personalised exercise plans to remind them of their exercises and the correct technique. Patients reported needing to use TRAK with the guidance of their treating physiotherapist initially. Physiotherapists highlighted appointment time constraints and lack of familiarity with TRAK as factors limiting engagement. In Phase 2, 67% patients accessed TRAK outside of the clinical environment. A total of 91% of patients were given a personalised exercise plan, but these were only updated in 34% of cases. Conclusion A comprehensive training package for patients and clinicians has been defined. The refined TRAK intervention is reported using the ‘Template for Intervention Description and Replication in preparation for a definitive randomised control trial

Assessing the efficacy of cell transplantation for Parkinson's Disease: a patient-centered approach

Background: Evidence from a growing number of preclinical studies indicate that recently discovered stem cell lines may be translated into viable cellular therapies for people with Parkinson’s disease. Objectives: In a brief but critical review, we examine the use of primary and secondary outcome measures currently used to evaluate the efficacy of cellular therapies. Methods: The current practice of relying on a single primary outcome measure does not appear to provide the evidence required for demonstrating the robust, life-changing recovery anticipated with the successful implementation of cellular therapies. Results: We propose a 360-degree assessment protocol, which includes co-primary and composite outcome measures to provide accurate and comprehensive evidence of treatment efficacy, from the perspectives of both the researchers and the patients

What value does the MPOC-SP have for physiotherapists working with children? Focus group results about family centred care.

Purpose: Research question: ‘How ‘Family- Centred’ do staff and parents perceive their work with disabled children and young people?’ Objectives: 1. To determine staff self-evaluation of family-centred care by completing the questionnaire MPOC-SP. 2. To explore staff views on their own family-centred care through discussion in a focus group, using the themes from the MPOC-SP. 3. To explore parental views of family-centred provision for their disabled child by interview individually or in a focus group. 4. To identify any areas where further staff training to improve their family-centred service provision. Relevance: Physiotherapists working with children do not work in isolation and are a valuable part of the interdisciplinary team. Achieving high standards of health care provision with children with a disability requires a focus on Family Centred Care. Family Centred Care has been defined as a philosophy of care where families are supported in their decision-making roles in an equal partnership with professionals. Participants: Purposive non-random sampling was used to recruit study participants. Staff were approached by letter and invited to take part in a focus group in their area. These staff then gave out information letters to parents whose child was receiving a service. Twenty nine staff and 10 parents volunteered. Methods: This study utilized a mixed methodology. The Measure of the Processes of Care for Service Providers (MPOC-SP) is a sensitive, valid and reliable questionnaire. Quantitative data was gathered from administration of this questionnaire with staff. A series of interviews and focus groups based around the themes from the questionnaire were also conducted with staff and parents of disabled children. These were recorded with a Dictaphone and transcribed verbatim. Analysis: The questionnaire data were analyzed with SPSS 16. The questionnaire is scored from 1-7 with 1 being the lowest 7 the highest score staff could award themselves based on their own perception of their performance. Interview and focus group data were analyzed using an editing approach. Results: The mean of ‘interpersonal sensitivity’ was 5.35 and ‘respect’ 5.74 compared to ‘providing general information’ 4.34 and ‘communicating’ 4.96, being slightly lower in staff self perception. Staff commented on the value of the questionnaire as a self- reflective tool. Staff described how they adapted their service to meet parental needs and empowered and enabled parents despite. Parent’s spoke highly of staff input and described the attributes they most valued. Some parental feedback suggested that there needed to be a clearer complaints procedure. Conclusions: This was a pilot study and the results should be treated with caution. The MPOC-SP has value for practitioners as a self reflective tool. The majority of parents considered they were treated as equal partners in the decision making processes and this should continue. To increase our understanding of Family Centred Care this topic could be explored by a closer ethnographic study in this context. Implications: Physiotherapists working with families with children with a disability need to evaluate their practice in terms of family centred care. Investigation of the influence of focused Family Centred Care training on parental experiences is warranted

Motor-cognitive dual-task deficits in individuals with early-mid stage Huntington's disease

Background. Huntington’s disease (HD) results in a range of cognitive and motor impairments that progress throughout the disease stages; however, little research has evaluated specific dual-task abilities in this population, and the degree to which they may be related to functional ability. Objectives. The purpose of this study was to a) examine simple and complex motor-cognitive dual-task performance in individuals with HD, b) determine relationships between dual-task walking ability and disease-specific measures of motor, cognitive and functional ability, and c) examine the relationship of dual-task measures to falls in individuals with HD. Methods. Thirty-two individuals with Huntington’s disease were evaluated for simple and complex dual-task ability using the Walking While Talking Test. Demographics and disease-specific measures of motor, cognitive and functional ability were also obtained. Results. Individuals with HD had impairments in simple and complex dual-task ability. Simple dual-task walking was correlated to disease-specific motor scores as well as cognitive performance, but complex dual-task walking was correlated with total functional capacity, as well as a range of cognitive measures. Number of prospective falls was strongly correlated to dual-task measures. Conclusions. Our results suggest that individuals with HD have impairments in cognitive-motor dual-task ability that are related to disease progression and specifically functional ability. Dual-task measures appear to evaluate a unique construct in individuals with early to mid-stage HD, and may have value in improving the prediction of falls risk in this population

Process evaluation in intellectual disability research: A case study and the need for adaptation of frameworks

Background: Involving adults with cognitive impairments, and specifically intellectual disability, in research is critical to developing appropriate and effective interventions but is highly challenging. Our aim was to examine where complexities lie in delivering research in underrepresented and hard to reach populations using an exemplar process evaluation conducted as part of a drug reduction trial. Methods: Quantitative methods were used to assess recruitment, adherence to the intervention and safety data. Qualitative interviews examined non-efficacy based barriers to drug reduction in clinical practice. Results: Feasibility of carrying out a drug reduction trial was limited by a lack of exploration of acceptability. Barriers to successful delivery included concerns around wider care team co-operation and consent procedures. Conclusions: It is important to consider interventions involving adults with cognitive impairment, and particularly intellectual disability, as complex. Current process evaluation frameworks require further adaptation to guide research and innovation in these populations

Rethinking functional outcome measures: the development of an upper limb test to assess basal ganglia dysfunction

The basal ganglia is implicated in a wide range of motor, cognitive and behavioural activities required for normal function. This region is predominantly affected in Huntington’s disease (HD), meaning that functional ability progressively worsens. However, functional outcome measures for HD, particularly those for the upper limb, are limited meaning there is an imperative for well-defined, quantitative measures. Here we describe the development and evaluation of the Moneybox test (MBT). This novel, functional upper limb assessment was developed in accordance with translational neuroscience and physiological principles for people with a broad disease manifestation, such as HD. Participants with HD (n=64) and healthy controls (n=21) performed the MBT, which required subjects to transfer tokens into a container in order of size (Baseline Transfer), value (Complex Transfer) with and without reciting the alphabet (Dual Transfer). Disease specific measures of motor, cognition, behaviour and function were collected. HD patients were grouped into disease stage, from which, discriminative and convergent validity was assessed using Analysis of Variance and Pearson’s correlation respectively. Manifest HD participants were slower than pre-manifest and control participants, and achieved significantly lower MBT total scores. Performance in the Complex Transfer and Dual Transfer tasks were significantly different between pre-manifest and stage 1 HD. All MBT performance variables significantly correlated with routinely used measures of motor, cognition, behaviour and function. The MBT provides a valid, sensitive and affordable functional outcome measure. Unlike current assessments, MBT performance significantly distinguished the subtle differences between the earliest disease stages of HD, which are the populations typically targeted in clinical trials

A pilot study of a minimally supervised home exercise and walking program for people with Parkinson’s disease in Jordan

Aim: This study aimed to evaluate the feasibility and cultural considerations of a minimally supervised, home-based exercise program in Jordan. Methods: Quantitative and qualitative approaches were used. Thirty participants were randomly allocated to either an 8-week intervention group (n = 16), or a standard care group (n = 14). The intervention incorporated the home use of an exercise DVD, walking program and initial instructional sessions and weekly phone calls provided by a physiotherapist. Interviews were used to explore feasibility. Unified Parkinson’s disease rating scale (UPDRS-III); balance and walking speed were assessed. Results: The retention rate was 86.7% and mean adherence rate was 77%. Personal and sociocultural barriers of adherence to the exercise program were identified. UPDRS-III at follow-up was lower in the intervention group. Conclusion: A home exercise program was feasible. Sociocultural barriers specific to Arabic culture may affect the uptake of such an intervention in Parkinson’s disease in these countries