Helen Davies

The Role of Action Research in the Investigation and Diffusion of Innovations in Health Care: The PRIDE Project

In this article, the authors discuss the role of action research in relation to the investigation and practical implementation of innovations in health care. The diffusion of innovations is an essential component of the modernization of health services worldwide. However, the literature shows that it is not an easy process to research. A paradox is noted that although action research has much to offer, it has had only a limited impact in the innovation field. Drawing on an example of a project in the United Kingdom, the authors discuss whether action research is a valuable method in the study of the diffusion of innovations. They analyze its strengths and limitations as a “whole systems approach” that combines researching with developing and diffusing innovations. They argue that it is best suited to the study of innovation diffusion where there is a need for high level of adaptation in each new setting.

The information needs of people living with ankylosing spondylitis: a questionnaire survey.

BackgroundToday, health care is patient-centred with patients more involved in medical decision making and taking an active role in managing their disease. It is important that patients are appropriately informed about their condition and that their health care needs are met. We examine the information utilisation, sources and needs of people with Ankylosing Spondylitis (AS).MethodsParticipants in an existing AS cohort study were asked to complete a postal or online questionnaire containing closed and open-ended questions, regarding their information access and needs. Participants were stratified by age and descriptive statistics were performed using STATA 11, while thematic analysis was performed on open-ended question narratives. Qualitative data was handled in Microsoft Access and explored for emerging themes and patterns of experiences.ResultsDespite 73% of respondents having internet access, only 49% used the internet to access information regarding AS. Even then, this was only infrequently. Only 50% of respondents reported accessing written information about AS, which was obtained mainly in specialist clinics. Women were more likely than men to access information (63% (women) 46% (men)) regardless of the source, while younger patients were more likely to use online sources. The main source of non-written information was the rheumatologist. Overall, the respondents felt there was sufficient information available, but there was a perception that the tone was often too negative. The majority (95%) of people would like to receive a regular newsletter about AS, containing positive practical and local information. Suggestions were also made for more information about AS to be made available to non-specialist medical professionals and the general public.ConclusionsThere appears to be sufficient information available for people with AS in the UK and this is mostly accessed by younger AS patients. Many patients, particularly men, choose not to access AS information and concerns were raised about its negative tone. Patients still rely on written and verbal information from their specialists. Future initiatives should focus on the delivery of more positive information, targeting younger participants in particular and increasing the awareness in the general population and wider non-specialist medical community.

The effect of physical activity and motivation on function in ankylosing spondylitis: A cohort study

Objectives Exercise is reported to improve function for people with ankylosing spondylitis (AS) but it is not clear if this effect is causal or if patients with milder disease find it easier to exercise. This study examines the effect of exercise and motivation to exercise on function, while controlling for disease severity. Methods Participants who were members of an existing AS cohort were asked about physical activity, motivation to exercise, function, and disease severity. Path analysis on STATA was used to examine the correlation between factors associated with function at time of exercise and with function after 3 months of follow-up. Results The response rate to the questionnaire was 88% (326/371). Improvement in function was greatest for people with higher physical activity levels and those who were more motivated to exercise—this was especially the case for patients with the most severe disease activity. The effect of motivation to exercise not only had a direct effect on function, but also an indirect effect of improving activity levels thereby improving both current and future function. People with high intrinsic motivation (driven by pleasure) had the greatest benefit to activity and function. Conclusions Exercise does improve function, especially for those with severe disease. In addition, motivation alone improves function as much as exercising itself. Therefore, interventions targeting motivation to exercise would have as much effect on improving function as interventions offering exercise opportunities. In addition, any intervention that both improves motivation and increases opportunities to exercise would have a 2-fold influence on function.

Development of an information source for patients and the public about general practice services: an action research study

Objective  The publication of information about the performance of health‐care providers is regarded as central to promoting greater accountability and empowering patients to exercise choice. The evidence suggests that the public is not very interested in accessing or using current sources of information. This study aimed to explore the information needs of patients in the context of UK primary care and to develop an information source about general practice services, designed to be usable by and useful to patients.

Latent autoimmune diabetes in adults: increased awareness will aid diagnosis

Latent autoimmune diabetes iln adults (LADA) is the term used for patients with non-insulin dependent diabetes who progress to insulin dependency as their pancreatic secretion of insulin fails. Diagnosis is based on adult age at the time of diabetes, the presence of serum autoantibodies to pancreatic antigens and the absence of a requirement for insulin at diagnosis. High titres of serum glutamic acid decarboxylase (GAD) antibodies act as a marker for LADA. Serum C-peptide concentrations are also lower in autoimmune diabetic patients. The best treatment for patients with LADA is not clear, but early insulin treatment may prevent pancreatic β-cell failure.

Patient perspectives of managing fatigue in Ankylosing Spondylitis, and views on potential interventions: a qualitative study

BackgroundFatigue is a major component of living with ankylosing spondylitis (AS), though it has been largely over-looked, and currently there are no specific agreed management strategies.MethodsThis qualitative exploratory study involved participants who are members of an existing population-based ankylosing spondylitis (PAS) cohort. Participants residing in South West Wales were invited to participate in a focus group to discuss; (1) effects of fatigue, (2) self-management strategies and (3) potential future interventions. The focus groups were audio-recorded and the transcripts were analysed using thematic analysis.ResultsParticipants consisted of 3 males/4 females (group 1) and 4 males/3 females (group 2), aged between 35 and 73 years (mean age 53 years). Three main themes were identified: (1) The effects of fatigue were multi-dimensional with participants expressing feelings of being ‘drained’ (physical), ‘upset’ (emotional) and experiencing ‘low-mood’ (psychological); (2) The most commonly reported self-management strategy for fatigue was a balanced combination of activity (exercise) and rest. Medication was reluctantly taken due to side-effects and worries over dependency; (3) Participants expressed a preference for psychological therapies rather than pharmacological for managing fatigue. Information on Mindfulness-Based Stress Reduction (MBSR) was received with interest, with recommendations for delivery in a group format with the option of distance-based delivery for people who were not able to attend a group course.ConclusionsPatients frequently try and manage their fatigue without any formal guidance or support. Our research indicates there is a need for future research to focus on psychological interventions to address the multi-faceted aspects of fatigue in AS.

Severe flare as a predictor of poor outcome in ankylosing spondylitis: a cohort study using questionnaire and routine data linkage

OBJECTIVE To explore severe flare and constant disease pattern (no periods of remission) in AS as predictors of poor outcomes [impaired function, unemployment/early retirement, work impairment, anti-TNF, surgery, frequent general practitioner (GP) visits, depression and anxiety]. METHODS Three hundred and forty-eight AS patients completed questionnaires about their experience with disease flares. Questionnaire data were linked to electronic medical records to examine visits to GPs and hospital admission data. Outcomes were stratified in two ways: self-reported experience of severe flare and constant disease pattern using the flare illustration tool. RESULTS The majority of patients (72%, 208/289) experienced flare pre-diagnosis. Severe flares were reported by 58% (202/348) of participants (self-report); of these, 195 responded about earliest flares and 69% (135/195) of severe flare patients experienced flares pre-diagnosis. Patients who self-reported severe flares had worse function, disease activity, work impairment and symptoms of anxiety and depression, were less likely to be employed and had more GP encounters per year compared with those who never reported severe flares. Participants who reported constant unremitting disease on the flare illustration tool had worse disease activity, impaired function and work impairment and were more likely to smoke compared with those with intermittent disease. Analysis showed a relationship between self-report of severe flare and subsequent depression, impaired function, increased disease activity and work limitations. CONCLUSION Severe flare is associated with poor outcomes such as work impairment and impaired function. The onset of severe flare early in the disease course may be a risk factor for later poor outcome and this group could benefit from targeted early aggressive treatment to improve prognosis.

GADA testing: The current state of knowledge

This review considers the current knowledge and practice of GADA testing people with diabetes in Europe and the UK. Important issues are raised, including interpretation of the results and the clinical relevance of the GADA titre. Recommendations are made towards standardising GADA testing, using World Health Organization units.

Headteachers’ prior beliefs on child health and their engagement in school based health interventions: a qualitative study

BackgroundSchools play an important role in promoting the health of children. However, little consideration is often given to the influence that headteachers’ and school staff’s prior beliefs have on the implementation of public health interventions. This study examined primary school headteachers’ and school health co-ordinators’ views regarding child health in order to provide greater insights on the school’s perspective for those designing future school-based health interventions.MethodsA qualitative study was conducted using 19 semi-structured interviews with headteachers, deputy headteachers and school health co-ordinators in the primary school setting. All transcripts were analysed using thematic analysis.ResultsWhilst many participants in this study believed good health was vital for learning, wide variance was evident regarding the perceived health of school pupils and the magnitude of responsibility schools should take in addressing child health behaviours. Although staff in this study acknowledged the importance of their role, many believed the responsibility placed upon schools for health promotion was becoming too much; suggesting health interventions need to better integrate school, parental and societal components. With mental health highlighted as an increasing priority in many schools, incorporating wellbeing outcomes into future school based health interventions is advocated to ensure a more holistic understanding of child health is gained.ConclusionUnderstanding the health beliefs of school staff when designing interventions is crucial as there appears to be a greater likelihood of interventions being successfully adopted if staff perceive a health issue as important among their pupils. An increased dependability on schools for addressing health was expressed by headteachers in this study, highlighting a need for better understanding of parental, child and key stakeholder perspectives on responsibility for child health. Without this understanding, there is potential for certain child health issues to be ignored.

Randomized, controlled, parallel-group prospective study to investigate the clinical effectiveness of early insulin treatment in patients with latent autoimmune diabetes in adults

BackgroundLatent autoimmune diabetes in adults [LADA] is a type 1 diabetes that is slowly developing. This means many people are treated as having type 2 diabetes at diagnosis as they are adults who are not immediately insulin dependent. LADA can be distinguished from type 2 diabetes by antibody tests. Patients who are antibody positive have an autoimmune reaction which is similar to that of type 1 diabetes and is not found in type 2 diabetes. We would like to examine the best way of treating LADA in the early phase of the conditions, with tablets (similar to type 2 diabetes) or with insulin (similar to type 1 diabetes).Methods/designThis is an open parallel group prospective randomised trial. Participants need to have a GAD antibody test results of 101 WHO units or more and a diagnosis of diabetes not requiring insulin at diagnosis. Participants will need to have been diagnosed within 12 months and not treated with insulin at study entry. They will be randomised to receive either insulin (NovoMix 30) or tablets (diet treated followed by metformin followed by glitazone (with or without metformin) followed by insulin). Primary outcome assessment will be for change in HbA1c and change in fasting C-peptide over 24 months. Secondary outcome measures will include Quality of life, GAD antibody levels, adverse events, inflammatory markers, insulin resistance, and markers of the metabolic syndrome.DiscussionThis study seeks the best treatment for early LADA in terms of maintaining glycaemic control and maintaining natural insulin production.Trial registrationISRCTN63815121