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EDITION 01 • AUTUMN 2014 Primary Care Research Wales A magazine for primary care researchers in Wales produced by the Wales School for Primary Care Research In this addition: WSPCR Director, Professor Chris Butler foreword Primary health care initiatives: Community nursing Research active GP practice profile: Ely Bridge Surgery Primary Care Research Incentive Scheme (PiCRIS) WSPCR flexible funding pilot projects & fellowship awards Research studies spotlight: Cardiff University Research studies spotlight: Bangor University WSPCR leadership & support teams Pg 2 Pg 3 Pg 4 Pg 5 Pg 6-7 Pg 8-9 Pg 9-10 Pg 11 Wales School for Primary Care Research (WSPCR) Foreword from Professor Christopher Butler, Director, WSPCR Wales has always punched above its weight in the field of primary care research. Great pioneers such as Tudor Hart and Nigel Stott described the inverse care law, unwarranted variation in primary clinical care and developed and evaluated whole systems approaches to enhancing primary care in landmark studies that have influenced the design and of primary are services and informed innumerable clinical decisions worldwide over many decades. For example, one of the first randomized controlled trials to show that antibiotics do not provide meaningful benefit to adults with acute cough was done in Wales, and this evidence is still being used to support antimicrobial stewardship strategies that are helping to contain antibiotic resistance worldwide. More recently, primary care researchers in Wales have led flagship studies funded by the Medical Research Council, the EU funding Programs, the Medical Research Council, The Wellcome Trust, NISCHR and just about all ‘blue chip’ funders that have generated outputs that are impacting and will impact on care for generations, across almost every domain of care. Supported by NISCHR CRC, Trials Units and enthusiastic primary care clinicians and patients, primary care studies have often been the best recruiting sites in multicenter and international studies. The message is out that Wales is a world leader in identifying important research questions, in designing doable, imaginative and robust studies, and in implementing the studies to generate outputs that make a difference to peoples’ health and quality of life. NISCHR (and WORD before) have been far-sighted in the support given to primary care research, and all will agree that the returns on the investment have been nothing short of stellar. The ‘gearing of the investment in primary care research in Wales’ has been considerable. Despite this, primary care research is underfunded, under resourced and with a very small critical mass when one considers its importance: Within the UK, over 95% of NHS clinical contacts are made in general practice and around 80% of health problems are managed at this level. Over 300 million general practice consultations take place in the UK each year; these encompass health promotion, prevention and screening as well as acute and chronic care. Governments around the world all look to increasing investment in primary care to help make their health systems sustainable by bringing more care out of hospital back into the community. Unless this re-configuration is underpinned by relevant and rigorous research, it will fail to deliver optimally. This publication presents evidence that Wales has a worldleading centre of excellence in primary care research that is making a difference to health care and to people’s lives now. There is a lot to be proud of that should be even further cherished and nurtured by government, health boards, higher education institutions and the people of Wales. Forthcoming event: Healthy Ageing: The benefits of a healthy lifestyle Let doctors leave the centre stage and usher in the prophylactic age: A Conference and a Public Lecture Thursday 30th October, 1.00pm to 5.30pm and 7.00pm to 8.30pm All Nations Centre, Cardiff CF14 3NY Registration: www.surveymonkey.com/s/HealthyAgeingConference 2 WSPCR NEWS • EDITION 1 • AUTUMN 2014 Primary health care initiatives: Community nursing research In 2009, the Welsh Assembly Government published ‘A Community Nursing Strategy for Wales’ which set out the vision for the future services in Wales that will ‘provide holistic, seamless care with a nursing workforce that is flexible, adaptable and knowledgeable’. Community nursing is one of the WSPCR research themes, and is led by Professor Joyce Kenkre, WSPCR Executive Board member, alongside Dr Carolyn Wallace, WSPCR coordinator for community nursing research. Aware of the need to develop an evidence base in order to under-pin evidence based practice in the community, a strategy workshop was held in December 2011. The workshop was supported by the Chief Nursing Officer, with representation from professionals from clinical practice, higher educational institutions, professional representative bodies, representatives from health boards. Using a consensus methodology approach, the group identified the key research priorities for providing the evidence for the future health and healthcare of the people in Wales. Since then, a Community Nursing Research Strategy for Wales Board has been established, meeting quarterly, and the team have been delighted with the support received and momentum gained so far. Full details about the CNR strategy can be found at: www.wspcr.ac.uk/crns-board Research priorities and themes identified by the Community Nursing Research Strategy Workshop Research priorities 1. Barriers to translational research in community nursing 2. Evaluating the impact and value of community nurses 3. Role definition versus flexibility 4. The system: making it work 5. Looking outwards not inwards: person-centredness The research themes • Organisational change and service redesign • Nursing roles • Skill mix • Evidence and outcomes • Education and development • Long-term care • Occupational health • Patient safety • Patient and user perspectives Community nursing study profile: Medication monitoring for people with dementia in care homes - A pre-pilot before and after study Principal Investigator: Dr Sue Jordon, Swansea University Aim: To explore the introduction of a structure nurse-led medication monitoring profile. About the study: Pre-pilot work was conducted with 11 patients in 3 care homes. Nurses administered the West Wales Adverse Drug Reaction Profile for Medicines in Mental Health to the patients. Researchers reviewed patients’ notes to record problems found and actioned before and after administration of the profile. This nurse-led medication monitoring profile identified new problems for all 11 patients. Some problems required actions on an individual level e.g. pain management, while others required review of care planning e.g. oral health, postural hypotension monitoring. Medication monitoring took 20-25 minutes per patient, and no adverse effects were noted. Conclusions: The profile improved the process of care, but longer-term follow up is needed to demonstrate an effect on clinical outcomes. Patients are likely to benefit from structured nurseled medication monitoring, but without a full clinical trial, profiles are unlikely to be widely adopted in routine care. Funding: £6,995, WSPCR Flexible funding scheme / NISCHR Update: A full pilot study is now underway, funded by WSPCR Flexible funding scheme / NISCHR WSPCR NEWS • EDITION 1 • AUTUMN 2014 3 Research active GP surgery profile: Ely Bridge Surgery, Cardiff 10 questions with Research Manager, Mrs Melanie Davies Q. What studies is the Surgery currently involved in? We have conducted studies involving most therapeutic areas and are currently participating in studies focused on new treatment or management strategies for asthma, COPD, diabetes, hyperlipidaemia, CHD, UTI, heart failure, early lung cancer detection, depression and atrial fibrillation. Q. What is your role at Ely Bridge Surgery? Full time Research Nurse / Manager. I am also seconded by the practice to the role of South East Wales Regional Mentor for practices participating in the Primary Care Research Incentive Scheme (PiCRIS). Q. Can you describe Ely Bridge Surgery? This a large practice, located in an area of social deprivation and relatively high unemployment. The practice list size is approx 13,250 patients, serviced by a team of 4 full time and 6 part time GPs and 1 GP trainee. Q. How long has the Surgery been involved in research? Our research experience has spanned approximately 18 years. We predominantly perform research studies in collaboration with academic institutions and commercial companies, however members of the GP and Nursing team have also conducted independent research. Q. Who in your Surgery gets involved with the research? 2 GPs have adopted the role of Principal Investigators for all of the research studies conducted here, however all of the GPs engage in discussions concerning the feasibility and desirability of engaging in specific studies and participate in the referral of suitable patients within the practice. The nursing team participate in the identification of suitable participants for inclusion in research studies. This is particularly successful in the areas of chronic disease management such as diabetes and asthma etc. Research has become an integrated part of the practice daily activity and involves in some part all members of the practice team, coordinated by me as research manager. 4 WSPCR NEWS • EDITION 1 • AUTUMN 2014 Q. In your experience, what are the benefits for a GP surgery to be involved in research? The practice can provide a beneficial contribution to the knowledge base required to implement effective evidenced based care within the primary care population. Research provides opportunities for GPs and staff to gain and expand their experience, knowledge and training (often at no further expense to the practice). Patients can take advantage of the opportunity to receive novel therapies and management. Research may provide an additional income stream for the practice. Q. What are the challenges? Lack of resource poses the greatest challenge i.e. lack of time and staff. Lack of knowledge and perhaps confidence in engaging in research. Q. Any tips for over-coming / avoiding these challenges? Find a member of your team who is interested in finding out more about research and is happy to coordinate and take accountability for the research activity within your practice. Take advantage of any funding schemes (such as PiCRIS) that can enable you to develop an infrastructure within your practice conducive to research activity, e.g. dedicated research time for key members of your team. Access hands on support for study recruitment from personnel representing organisations such as NISCHR CRC. Access free research training which will assist you in learning about and adhering to regulatory guidelines and good clinical practice eg from National Institute of Health Research or NISCHR CRC. Q. What would you say to other GP surgeries considering getting involved in research? Research activity can provide many benefits to your practice. My advice would be to “dip your toe in the water” by starting with simple observational studies. I would also suggest that where possible you take advantage of external support. This may help you to create a practice infrastructure conducive to research and develop a research strategy suited to your practice dynamics. Q. What are the plans for the future research activities at the Surgery? Research has become embedded within the culture of this practice. With efficient succession planning to cover changes in staff etc, research activity should continue indefinitely and successfully at Ely Bridge Surgery. National Institute for Social Care and Health Research (NISCHR) Academic Health Science Collaboration (AHSC) Primary Care Research Incentive Scheme: PiCRIS The purpose of the Primary Care Research Incentive Scheme (PiCRIS) is to increase capacity and capability for high quality NHS research in primary care in Wales, facilitating a strong primary care research culture. PiCRIS offers funding, support and mentorship to general practices across Wales to provide them with an incentive to become research active and embed research activity in daily practice. Practices provided with a PiCRIS award are assisted to develop the necessary infrastructure, capability and capacity to effectively increase and manage a portfolio of research studies. Support is also available from NISCHR Clinical Research Centre (CRC), which has dedicated primary care teams, who work with practices to support the delivery of high quality studies. Potential benefits of participation in the scheme include:• A financial award • Membership of the network of NISCHR Research Practices across Wales • Ongoing mentorship from one of 3 regional mentors • Free training provided by NISCHR Clinical Research Centre • Funding to gain RCGP Research Ready accreditation • Peer support from other NISCHR Research Practices • Opportunity to develop a new revenue stream through participating in commercial research. There are four level of PiCRIS engagement available to general practices (Affiliate, Level 1, Level 2 and Sessional). These offer practices the opportunity to choose a level of entry, matched to their research experience and capability. For further information about PiCRIS, please send an email to [email protected] or visit NISCHR AHSC’s website: www.wales.nhs.uk/sites3/pag e.cfm?orgid=952&pid=51981 WSPCR NEWS • EDITION 1 • AUTUMN 2014 5 WSPCR Flexible funding scheme: supporting the development of primary care researchers in Wales Between 2011-2014, with the support of NISCHR, the Wales School for Primary Care Research was delighted to be able to offer a flexible and responsive funding scheme. The focus of the funding was for pilot projects and fellowships to develop high quality research proposals in primary care in Wales. The scheme is now closed to applications with the total fund of £480,000 allocated. Pilot studies and fellowships listed below are now well underway, and we look forward to soon sharing with you the results of the studies, and news of how the awards have helped support developing primary care researchers in Wales. Some of the supported pilot projects and fellowships are listed below: A novel compound to aid infection control in primary care settings. (Pilot study). C Heard, Welsh School of Pharmacy, Cardiff University. A point of care test for lower respiratory tract bacterial infection in Primary Care: a proof of concept study. I Matthews, C Gregory, Cardiff University. Activity Increase Despite Arthritis (AIDA) Phase III / Development of a large scale trial evaluating the 'Hip and Knee Book' for those diagnosed with osteoarthritis. (Grant writing fellowship). N Williams, N Ud Din, Bangor University. Adolescent mental health: Design of a web-based adolescent depression and prediction tool. (Pilot study); A Thapar, Cardiff University. Classification-Based Group Functional Therapy (CLASTER) in Subgroups of Chronic Low Back Pain. (Pilot study). L Sheeran, V Sparkes, SOHSC, Cardiff University. Clinical research post-doctoral fellowship in primary care dentistry. I Chestnutt, School of Dentistry, Cardiff University. Community-based mentoring for people living with chronic pain. (Pilot study). O Hughes, Powys Teaching Health Board. Determine the feasibility of a randomised controlled trial of evidence-based scripted consultations, for HPV positive women with abnormal smear tests, designed to reduce anxiety, inform uptake, and improve disease control (Grant writing fellowship). C Wilkinson, D Pasterfield, Bangor University. Developing Quality Care Metrics for Community Specialist Nurses in Rural Wales. (Pilot study) D Roberts, Glyndŵr University. ‘Fit for List?’ Optimising Wellbeing, Fitness and Outcomes of Cancer Patients. (Pilot study). R Barlow, Cardiff University. Investigation into the factors affecting community pharmacists engagement with spontaneous reporting of adverse drug reactions. (Pilot study). L Hughes, Welsh School of Pharmacy, Cardiff University. 6 WSPCR NEWS • EDITION 1 • AUTUMN 2014 Management of dental pulpal and apical pathologies in primary care, use of antibiotics and the influences of prescribing behaviours. (Pilot study). I Chestnutt, N Francis, A Cope, Cardiff University. Measuring activity recovery at home in the post-acute phase of stroke rehabilitation by means of a novel computerised system. (Pilot study). R VanDeursen, Cardiff University. Medication monitoring for people with dementia in care homes: A protocol for an outcomes study. (Pilot study). S Jordan, Dept of Nursing, Swansea University. Natural Salicylates and Cancer – Cancer RDG, Workshop and proposal development. (Fellowship). P Elwood, R Davies, M Gal, M Mustafa, Cardiff University. Nurse-led medication monitoring for patients with dementia in care homes in South West Wales: a feasibility study for a stepped wedge trial. (Pilot study). S Jordan, Dept of Nursing, Swansea University. Prevalence of ocular pathologies in patients with diabetes mellitus and their impact upon vision. (Pilot study). R North, Cardiff University. Reasons for placement and replacement of crowns in primary dental care in Wales. (Pilot study). C Lynch, School of Dentistry, Cardiff University. Scoping study to inform future research to develop and implement a generic patient reported outcome measure of patient empowerment in primary care. (Pilot study). M McAllister, Institute of Genetics, Cardiff University. The GROMIT study (GROup Motivational InTerviewing): intervention development of group motivational interviewing to promote emotional and physical health in school pupils. (Pilot study). S Murphy, Cardiff University. The MOSAIC study. Molluscum Contagiosum in the Community: A description of the Epidemiology of the disease in the community. (Pilot study). N Francis, J Olsen, Cardiff University. Trial TORRENT software (recruitment aid) for the ADVICE (Acute Diahorrea and vomiting in children) study. (Pilot study). F Lugg, N Francis, Cardiff University. Understanding primary care perspectives on treatment options for skin and soft tissue infections (Pilot study). C O'Neill, SEWTU, Cardiff University. Vision screening for stroke. (Pilot study). R North, School of Optometry and Vision Sciences, Cardiff University. WSPCR NEWS • EDITION 1 • AUTUMN 2014 7 Research studies spotlight: South Wales WSPCR team The Wales School for Primary Care Research is currently leading 17 active research projects, and supporting a further 17, valued at a combined total of over £68M. The studies are based across the settings of primary care, community nursing and midwifery, dentistry, optometry and vision sciences, pharmacy and physiotherapy. The full research WSPCR portfolio is available to view online at: www.wspcr.ac.uk/research-portfolio If you are interested in getting involved in research, sign up to the WSPCR researcher network at: www.wspcr.ac.uk/join-researcher-network Here we profile a selection of active projects led by WSPCR researchers based in South Wales. Seal or Varnish Principal Investigator: Professor Ivor Chestnutt, Cardiff University Aim: To compare the proportion of children who receive the alternative treatments who are caries-free in their first molar Ivor Chestnutt teeth after three years. About the study: Dental caries (tooth decay) remains a significant source of morbidity in children, particularly those from deprived backgrounds where levels of decay are three times higher than in better off areas. In the worst affected areas 69% of 12 year olds have decay in their permanent teeth. The majority of this (84%) is located on the biting surface of the first molars which erupt at age six. We know that the application of pit and fissure sealants to the biting surface is effective in preventing tooth decay. This treatment consists of a plastic coating that occludes the rough biting surface which harbour decay-causing bacteria. The application at six-monthly intervals of fluoride varnish, containing high levels of fluoride is also known to prevent decay. This works by strengthening the tooth enamel making in more decay resistant. What is not know is which of these two modes of treatment works best and which is the most cost-effective. It is also not know which of these treatments are most acceptable from the perspective of children and their parents. Fissure sealant application requires an involved dental intervention (use of rotary brush, tooth surface preparation to make the sealant stick, use of a sucker to keep the tooth dry). Varnish application simply involves painting the tooth surface. This study will examine the relative clinical and cost effectiveness of these treatments and investigate their acceptability to children and their parents. Type of study: Randomised controlled trial Funding: £1.3M, NIHR Health Technology Assessment Programme 8 WSPCR NEWS • EDITION 1 • AUTUMN 2014 ChildRen with Eczema Antibiotic Management Study (CREAM) Nick Francis Principal Investigator: Dr Nick Francis, Cardiff University Aim: To determine whether oral or topical antibiotics, in addition to corticosteroid cream, are effective at reducing subjective eczema severity at two weeks in children with suspected infected eczema in primary care. About the study: Eczema is a debilitating skin condition that is especially common in young children. People with eczema frequently have a bacterium called Staphylococcus aureus (S. aureus) on their eczematous skin. Many doctors believe that infection with this bacterium can make eczema worse. However, studies so far of treating patients with eczema to eliminate or reduce S. aureus have been inconclusive and mostly of poor quality. So we do not know whether patients with eczema, which a GP or nurse suspects is infected, will benefit from treatment with antibiotics. Furthermore, we do not know whether taking an antibiotic by mouth (oral) or using an antibiotic cream on the skin (topical) is more effective and/or causes least harm. Type of study: Randomised controlled trial Funding: £1.3M, NIHR Health Technology Assessment Programme Oral Steroids for Resolution of Otitis Media with Effusion (OME) In CHildren: the OSTRICH study Principal Investigators: Dr NIck Francis & Professor Chris Butler, Cardiff University Aim: To determine if a short course of oral steroids improves the hearing of children with OME in the short and long term. About the study: Otitis media with effusion Chris Butler (OME, also known as glue ear) is an accumulation of fluid in the middle ear. About 80% of children have had OME by age 4. OME often gets better by itself, but for thousands of children every year it can result in deafness, which can affect speech and social development and result in depression and attention disorders. If deafness lasts longer than 3 months, children are usually offered hearing aids or a grommet operation. Both these procedures have associated risks and side effects, are costly, and require repeated visits to hospital clinics. Many oral medications do not work for OME. However, there is evidence from pooling findings from small trials that a short course of oral steroids may work. But these studies were either too small or of poor quality, so there is uncertainty about meaningful, longer term benefit. Type of study: RCT Funding: £1.58M, NIHR Health Technology Assessment Programme WSPCR NEWS • EDITION 1 • AUTUMN 2014 9 Research studies spotlight: North Wales Centre for Primary Care Research (NWCPCR), Bangor University International Cancer Benchmarking Partnership: Module 4 For Wales (ICBP) Principal Investigator: Professor Richard Neal, Bangor University Aim: What are the root causes of diagnostic delay for lung, ovarian, breast and colorectal cancers in Wales? About the study: There are important differences in cancer survival across the world and the reason for this has not been fully explored. The International Cancer Benchmarking Partnership is a unique and innovative international partnership of clinicians, academics and policy makers. It is the first of its kind and involves 12 jurisdictions in 6 countries. Module 4 is about understanding the journey a patient makes from first realising something is wrong and approaching a doctor, through to specialist referral, diagnosis and treatment. It is imperative to find out where the key areas of delay exist, what may be causing them and how this varies between jurisdictions. The International Cancer Benchmarking Partnership (ICBP) is a unique and innovative global partnership of clinicians, academics and policymakers. It is the first of its kind, seeking to understand how and why cancer survival varies between countries/jurisdictions. The partnership aims to generate insight and understanding that will help all partners improve cancer survival outcomes by optimising cancer policies and services. Type of study: Patient, primary care and specialist care surveys Funding: £114,000, Cancer Research Wales Fracture in the Elderly Multidisciplinary Rehabilitation (FEMuR) Principal Investigator: Dr Nefyn Williams Aim: FEMuR proposes to assess the feasibility of delivery an enhanced rehabilitation package to hip fracture patients aged 65 and over and receiving care in North Wales. This will enable an assessment to be made on the clinical and cost-effectiveness of such rehabilitation programme. About the study: Proximal hip fracture is a major health problem and the incidence increases in old age. Many living independently pre-fracture lose Nefyn Williams their independence afterwards, so it imposes a large cost burden on society, amounting to about £2 billion a year. Systematic reviews of rehabilitation programmes have concluded that there is insufficient evidence to demonstrate overall clinical or cost-effectiveness of such programme. Individual components of such a package show promise, but further investigation into their efficacy in specific patients groups is required. Type of study: Randomised feasibility study Funding: £533,000, NIHR Health Technology Assessment Programme 10 WSPCR NEWS • EDITION 1 • AUTUMN 2014 A feasibility randomised control trial looking at the effect on lung cancer diagnosis of giving a Chest X-Ray to smokers aged over 60 with new chest symptoms (ELCID) Principal Investigator: Professor Richard Neal Aim: Is it feasible to design and run an RCT to determine the effect on lung cancer diagnosis of giving a Chest X-Ray to smokers aged over 60 with new chest symptoms? Richard Neal About the study: In 2010, lung cancer killed over 34,000 people in the UK. Compared with other countries, patients in the UK have more advanced stage at presentation and a lower rate of resections. Most commonly, lung cancer is diagnosed following symptomatic presentation at primary care. No screening programmes or biomarkers currently exist. Our hypothesis is that one option for achieving earlier stage diagnosis (and more curative resections) is for earlier investigation of symptoms. For lung cancer there is a simple, cheap and readily available diagnostic investigation - the Chest X-ray (CXR). NICE guidelines currently identify the qualifying symptoms that should trigger referral for a CXR. In this trial we test the effect of referral for CXR with a lower threshold for symptoms ('extra-NICE'). Type of study: Feasibility randomised controlled trial Funding: £380,000, Cancer Research UK Talking about HPV-related cancer: Developing and testing scripted consultations after HPV-related cancer diagnosis Principal Investigator: Professor Clare Wilkinson, Bangor University Aim: To develop and field test evidence-based, cancer site-specific versions of a scripted HPV consultation, back up by take-home messages on brief information sheets, for patients diagnosed with HPV-related cancer. About the study: HPV is complex and difficult to explain to patients. A rapid Clare Wilkinson increase in HPV-related cancers has led to an urgent need for an intervention to help clinicians communicate with patients about HPV-related cancer. The study builds on the HPV core messages developed through our previous research. It uses a qualitative approach to obtain the views of patients diagnosed with HPV-related cancer about the content, phrasing and contextualisation of draft scripts. This will lead to the development of evidence based cancer site specific versions of a scripted HPV consultation, backed up by take-home messages on paper for patients diagnosed with HPV-related cancer. Type of study: Qualitative design using interviews and cognitive debrief interviews Funding: £228,000, NISCHR-RfPPB WSPCR NEWS • EDITION 1 • AUTUMN 2014 11 WSPCR Board of Directors Chris Butler Professor of Primary Care Medicine, Cardiff University Ivor Chestnutt Professor and Honorary Consultant in Dental Public Health, Cardiff University Stephen Denyer Professor of Pharmacy, Cardiff University Joyce Kenkre Professor of Primary Care, University of South Wales Rachel North Professor of Optometry and Vision Sciences, Cardiff University Robert van Deursen Professor of Physiotherapy, Cardiff University WSPCR Research Team Harry Ahmed GP Research Fellow Robyn Davies Manager Julia Hiscock Research Fellow Micaela Gal Portfolio Development Research Fellow Nina Gobat Research Fellow Guru Naik GP Research Fellow Mohammed Mustafa GP Research Fellow Carolyn Wallace Clinical Research Fellow, Community Nursing Rhiannon Phillips Research Fellow Angela Watkins Senior Communications Officer Wales School for Primary Care Research (WSPCR): Developing Excellence www.wspcr.ac.uk Editor: Mrs Angela Watkins, WSPCR, School of Medicine, Health Park, Cardiff CF14 4YS. The Editor wishes to thank all contributors to this edition of ‘Primary Care Research Wales. The Editor reserves the right to edit contributions received. Whilst care is taken to ensure the accuracy of information, this cannot be guaranteed. Views expressed in ‘Primary Care Research Wales’ do not necessarily reflect those of WSPCR. Feedback and items of interest relating to WSPCR are welcome and should be sent to [email protected]