Evaluating a grant development public involvement funding scheme: a qualitative document analysis.

Background: Undertaking Patient and Public Involvement (PPI) when developing health and social care research grant applications is critical. However, researchers may not have any funding to undertake PPI when developing grants. In response, the National Institute for Health and Care Research- Research Design Service for Yorkshire and the Humber in the United Kingdom, provided Public Involvement Fund Awards of up to £600 to fund PPI activity when researchers were developing grant applications.

Protocol for a cluster randomised controlled trial of the DAFNE (Dose Adjustment For Normal Eating) intervention compared with 5x1 DAFNE: a lifelong approach to promote effective self-management in adults with type 1 diabetes.

Introduction: The successful treatment of type 1 diabetes (T1D) requires those affected to employ insulin therapy to maintain their blood glucose levels as close to normal to avoid complications in the long-term. The Dose Adjustment For Normal Eating (DAFNE) intervention is a group education course designed to help adults with T1D develop and sustain the complex self-management skills needed to adjust insulin in everyday life. It leads to improved glucose levels in the short term (manifest by falls in glycated haemoglobin, HbA1c), reduced rates of hypoglycaemia and sustained improvements in quality of life but overall glucose levels remain well above national targets.

Process evaluation and exploration of telehealth in motor neuron disease in a UK specialist centre.

Objectives: To evaluate the processes involved in using a novel digitally enabled healthcare system (telehealth in motor neuron disease (TiM)) in people living with motor neuron disease (MND) and their informal carers. We examined TiM implementation, potential mechanisms of impact and contextual factors that might influence TiM implementation or impact.

Design: An 18-month, single-centre process evaluation within a randomised, pilot and feasibility study.

Using telehealth in motor neuron disease to increase access to specialist multidisciplinary care: a UK-based pilot and feasibility study.

Objectives: Care of patients with motor neuron disease (MND) in a specialist, multidisciplinary clinic is associated with improved survival, but access is not universal. We wanted to pilot and establish the feasibility of a definitive trial of a novel telehealth system (Telehealth in Motor neuron disease, TiM) in patients with MND.

Design: An 18-month, single-centre, mixed-methods, randomised, controlled pilot and feasibility study.

The TiM system: developing a novel telehealth service to improve access to specialist care in motor neurone disease using user-centered design.

Objectives: Attendance at a specialist multidisciplinary motor neurone disease (MND) clinic is associated with improved survival and may also improve quality of life and reduce hospital admissions. However, patients struggle to travel to clinic and may experience difficulties between clinic visits that may not be addressed in a timely manner. We wanted to explore how we could improve access to specialist MND care.

Supporting public involvement in interview and other panels: a systematic review.

Background: Members of the public are increasingly being invited to become members of a variety of different panels and boards.

Objective: This study aimed to systematically search the literature to identify studies relating to support or training provided to members of the public who are asked to be members of an interview panel.

Search Strategy: A systematic search for published and unpublished studies was carried out from June to September 2015.

DiPALS: Diaphragm Pacing in patients with Amyotrophic Lateral Sclerosis - a randomised controlled trial.

Background: Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease resulting in death, usually from respiratory failure, within 2-3 years of symptom onset. Non-invasive ventilation (NIV) is a treatment that when given to patients in respiratory failure leads to improved survival and quality of life. Diaphragm pacing (DP), using the NeuRx/4(®) diaphragm pacing system (DPS)™ (Synapse Biomedical, Oberlin, OH, USA), is a new technique that may offer additional or alternative benefits to patients with ALS who are in respiratory failure.

Evaluating public involvement in research design and grant development: Using a qualitative document analysis method to analyse an award scheme for researchers.

Plain English Summary: The National Institute for Health Research (NIHR) Research Design Service (RDS) for Yorkshire and Humber has been running a public involvement funding scheme since 2008. This scheme awards researchers a small amount of money to help them get involvement from patients and/or the public. Involvement activities take place at the time when researchers are planning studies, and when they are completing application forms to request funding for a proposed research project.

Using technology to improve access to specialist care in amyotrophic lateral sclerosis: A systematic review.

Our objective was to review the evidence for using technology to improve access to specialist care for patients with amyotrophic lateral sclerosis (ALS) and their carers. Medline, Google Scholar and the Cochrane library were searched for articles describing technology that enabled clinical care of patients with ALS or their carers where the patient/carer and clinician were not in the same location. Two applications were identified: telemedicine to facilitate video conferencing as an alternative to outpatient consultations and telehealth monitoring for patients with respiratory failure.

Conducting qualitative research within Clinical Trials Units: avoiding potential pitfalls.

The value of using qualitative research within or alongside randomised controlled trials (RCTs) is becoming more widely accepted. Qualitative research may be conducted concurrently with pilot or full RCTs to understand the feasibility and acceptability of the interventions being tested, or to improve trial conduct. Clinical Trials Units (CTUs) in the United Kingdom (UK) manage large numbers of RCTs and, increasingly, manage the qualitative research or collaborate with qualitative researchers external to the CTU.

The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective.

Objectives: This study explores the experience of gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease (MND) patients with dysphagia. However, there is lack of information describing patient and carer experiences following gastrostomy insertion.

Quality of life in children and adolescents with Osteogenesis Imperfecta: a qualitative interview based study.

Background: Osteogenesis Imperfecta (OI) is a disease with varying severity affecting physical, social and emotional well-being of the child and their family. There is no existing evidence on how the OI population regard their quality of life (QoL). The main aim of this study was to determine how OI impacts on the quality of life and well-being of children and their family.

Patient perceptions of the referral of older adults to an epilepsy clinic: do patients and professionals agree who should be referred to a specialist?

The aim of this study was to establish whether older patients concurred with previously reported staff perceptions of why older adults may be underrepresented in epilepsy clinics. Fifteen interviews with older patients provided support for four of seven key factors previously suggested by professionals as leading to underreferral of older adults: unclear referral pathway, complex differential diagnosis, gaps in referrer knowledge, and the length of time since onset. However, the patients interviewed did not report that patient difficulties accessing the hospital, patient reluctance to attend clinics, or the particular characteristics of older patients (knowledge, awareness, and willingness to ask for help) made it less likely that older adults would want to attend a specialist epilepsy clinic.

Factors influencing decision-making in relation to timing of gastrostomy insertion in patients with motor neurone disease.

Objectives: This study aimed to explore the decision-making process leading up to gastrostomy insertion from the perspective of the patients and their informal carers. Gastrostomy feeding is commonly used to support motor neurone disease patients with dysphagia. However, there is no robust evidence to suggest the optimal timing for gastrostomy insertion.

Use of the h-index to measure the quality of the output of health services researchers.

Objective: To assess the use of the h-index to measure the quality of the output of health services researchers.

Method: Online survey, with bibliometric analysis of a convenience volunteer sample of researchers mainly in the UK, North America and Australasia. Self-reported from Google Scholar: h-index; number of papers; number of citations; number of papers with ≥ 10 citations.

The impact on the family carer of motor neurone disease and intervention with noninvasive ventilation.

Background: The diagnosis of motor neurone disease (MND) has a profound effect on the functioning and well-being of both the patient and their family, with studies describing an increase in carer burden and depression as the disease progresses.

Aim: This study aimed to assess whether patient use of noninvasive ventilation (NIV) impacted on their family carer, and to explore other sources of carer burden.

Design: The study used qualitative interviews and scaled measures of carer health and well-being completed at three monthly intervals until patient end of life.

Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS).

Background: It is good practice for the public to be involved in developing health research. Resources should be available for researchers to fund the involvement of the public in the development of their grants.

Objective: To describe a funding award scheme to support public involvement in grant development, managed by an NIHR Research Design Service (RDS).

Understanding referral patterns to an epilepsy clinic: professional perceptions of factors influencing the referral of older adults.

Purpose: The number of older patients with epilepsy has been increasing steadily, however older adults have been shown to be referred less commonly to specialist epilepsy services than younger individuals. The aim of this study was to explore staff perceptions of why older adults may be under-represented in epilepsy clinics.

Method: We conducted 19 interviews with potential referrers and staff providing services including GPs, geriatricians, neurologists, service and clinical managers and epilepsy nurses.

The use of non-invasive ventilation at end of life in patients with motor neurone disease: a qualitative exploration of family carer and health professional experiences.

Background: Non-invasive ventilation improves quality and quantity of life in patients with motor neurone disease who have respiratory failure. Use of non-invasive ventilation may, however, result in complex clinical issues for end-of-life care, with concerns as to whether and how it should be withdrawn.

Aim: This study aimed to describe carer and health professional experiences of end-of-life care of motor neurone disease patients using non-invasive ventilation.

The initiation of non-invasive ventilation for patients with motor neuron disease: patient and carer perceptions of obstacles and outcomes.

This study aimed to examine the experiences of patients with motor neuron disease and their carers following the recommendation to use non-invasive ventilation (NIV). Qualitative interviews were carried out with 20 patients and 17 carers within one month of NIV being initiated. The study identified a range of potential barriers to usage including: adverse impressions of the technology; sleep disturbance; the sensation of pressure and pulsing; dry mouth; and mask design issues.

Involving the public in systematic reviews: a narrative review of organizational approaches and eight case examples.

This paper reviews the recent literature on public involvement in the systematic review process. We examine how relevant organizations involve the public in their review processes and how the public are involved in individual reviews. We identified nine surveys or reports of public involvement in systematic reviews at an organizational level and eight examples of public involvement in individual reviews.

Protocol for diaphragm pacing in patients with respiratory muscle weakness due to motor neurone disease (DiPALS): a randomised controlled trial.

Background: Motor neurone disease (MND) is a devastating illness which leads to muscle weakness and death, usually within 2-3 years of symptom onset. Respiratory insufficiency is a common cause of morbidity, particularly in later stages of MND and respiratory complications are the leading cause of mortality in MND patients. Non Invasive Ventilation (NIV) is the current standard therapy to manage respiratory insufficiency.

Understanding patient perceptions following a psycho-educational intervention for psychogenic non-epileptic seizures.

This study formed part of an evaluation of a brief educational intervention for patients with psychogenic non-epileptic seizures (PNES). The sessions provide information, seizure control techniques and management planning. The qualitative component of the research reported here aimed to provide insight into the participants' perceptions following the intervention.