Supporting People with Long Term Conditions

Funded by: British Heart Foundation

Lead Researcher: Dr Ian Jones (i.jones@salford.ac.uk), Maureen McGrath, Helen Franks

Traditional cardiovascular risk assessment tools are based on the results of studies undertaken in urban communities. It is therefore unclear whether these tools are accurate in assessing the cardiovascular risk of remote populations. In addition whilst deprivation is clearly linked to the development of cardiovascular disease few cardiovascular risk tools include an assessment of deprivation within their scoring systems.

One such formula is the ASSIGN risk predictor (Woodward et al 2007) which stratifies deprivation by post code, and has been recommended for use within Scotland. However, post code may not be a reliable indicator for deprivation in remote communities, such as the Western Isles due to their geographical formation. Therefore alternative methods of stratifying deprivation need to be developed and included in cardiovascular risk assessment equations.

Aim: To establish a reliable and accurate method of predicting CVD risk in remote populations.

Objectives:

• To establish whether traditional cardiovascular risk assessment tools are accurate in predicting the risk of cardiovascular disease in people living in a remote community
• To investigate whether the addition of a new deprivation score to traditional cardiovascular risk equations can more accurately predict cardiovascular risk in people living in a remote community

Funded by: Baxter Healthcare

Lead Researcher: Dr Mary Braine, Dr Gow, Dr Gosal, Amanda Woodall

Multifocal motor neuropathy (MMN) is a rare immune-mediated disorder characterized by slowly progressive, asymmetric, predominantly distal weakness of one or more limbs without sensory loss.  Although the cause of (MMN) is unknown, there is some evidence, mostly based on the clinical improvement after immunological therapies, that the disease has an immunological basis.

Patients with multifocal motor neuropathy (MMN) often require high doses of intravenous immunoglobulin to control their condition. The overall aim is to obtain information about the patient’s experience of subcutaneous infusion Immunoglobulin therapy, on a convenient sample population of patients with Multifocal motor neuropathy (MMN) on home subcutaneous immunoglobulin therapy (SCIg), compared to those patients with MMN who receive intravenous immunoglobulin’s as an in-patient.

Funded by: British Lung Foundation

Lead researcher: Dr Janelle Yorke, Dr Kwong, Prof Jones, Sarah Radcliffe

Few studies have examined the impact of idiopathic pulmonary fibrosis (IPF) on patients’ health-related quality of life (HRQL); in part because no disease-specific instrument exists. Studies that have evaluated life quality have used generic, or other disease-specific instruments - these may not capture symtoms and impairments pertinent to IPF.

The aim of this study is to develop the first disease specific HRQL questionnaire for people with IPF.  This project is in collaboration with National Jewish Health, Denver USA – approximately 100 patients will be recruited from each country. This newly developed questionnaire will capture unique physical and emotional problems pertinent to IPF, will be sensitive to changes over time and in response to treatment, and will have immediate international applicability.

Funded by: Pulmonary Hypertension Association UK

Lead Researcher: Dr Janelle Yorke, Nicki Rochnia

Recent advances in the treatment of Pulmonary arterial hypertension (PAH) have transformed what was once considered a rapidly lethal diagnosis into a long term condition characterised by chronic breathlessness and progressive functional impairment. Despite this, very little research has focused on the experience of living with PAH and the ensuring impact on patients’ health-related quality of life. This study involves the qualitative exploration of the experience of living with PAH. Both patient and informal carer experiences are being collected. A disease specific quality of life questionnaire for PAH is also being developed.

Funded by: Knowledge Transfer Partnership and Brook Advisory Service

Lead researchers: Professor Ben Light, Dr Paula Ormandy, Cristina Vascilica, Stephanie Mallas

Brook Manchester has seen an increase in the number of young men accessing the centre, for example accessing the C-Card system for condom distribution, but staff have no understanding of why and there is concern that current sex education has been found not to meet the needs of young men.

The KTP will give Brook a clear understanding about communicating effectively; what are the learning mechanisms/influences on boys and young men; are they different from females, and be better able to provide improved service accessibility; have a raised local profile; and engender a sense of personal responsibility around good sexual health. 

Strategic to the national Brook Network is the establishment of a framework for measuring and demonstrating evidence of impact to enable the communication and understanding of the difference their work makes. This KTP will provide Brook with an evaluation method/tool, which can be used to identify critical success; enabling Brook to contribute to informing national policy on value for money; preventative investment initiatives; and good practice.

Funded by: University of Salford, VC Development Fund

Lead Researcher: Dr Janelle Yorke, Nikki Rochnia, Dr Nick Hardiker, Lee Griffiths, Marion Wood, Alison Newey, Dr Barraclough, Prof Vestbo

Chronic obstructive pulmonary disease (COPD) is a major cause of morbidity and mortality with significant costs to the NHS. Pulmonary rehabilitation, a multidisciplinary approach which provides psycho-educational and exercise regimens often ranging from 2 to12 weeks duration, has been found to be an effective strategy for managing COPD. The improvements made in patient outcomes decline after termination of the pulmonary rehabilitation programme, with data suggesting a return to pre-pulmonary rehabilitation levels of health-related quality of life and exercise capacity within 6 to 18 months.

Many of the techniques learned during pulmonary rehabilitation programmes aimed at increasing participation in regular exercise and adopting a healthy lifestyle are not maintained after the intervention has ended, possibly due to lack of motivation. We have developed an internet-based rehabilitation maintenance programme for people with COPD, called E-habilitation. E-habilitation incorporates modelling and social strategies known to enhance a person’s sense of efficacy and includes four main components: education, exercise, self-monitoring, and support. The purpose of this study is to determine the feasibility of E-habilitation for maintenance pulmonary rehabilitation for patients with COPD.

This is a non-randomised controlled feasibility study. The aim is to determine the feasibility and initial efficacy of E-habilitation. It is hypothesised that subjects who participate in this programme will have improvements in their health related quality of life, breathlessness, self-efficacy, perception of available social support and exercise behaviour.

Yorke J, Vestbo J, Calverley P. Maintenance pulmonary rehabilitation therapy for patients with COPD: protocol Cochrane Database of Systematic Reviews, 2010 Issue 4.

Funded by: Department of Health

Lead Researchers: Annie Emery, Rob Cookson, Professor Ben Light, Dr Paula Ormandy

The focus of this North West demonstration project is to ensure that Lesbian and Bisexual (LB) women have equal access to cervical screening.

This will be achieved through:

• increasing knowledge within the LB women’s community about cervical cancer and the need to attend screening, LB women’s rights to access screening and women’s confidence in dealing with barriers to accessing screening
• developing a mixed-mode approach to intervention which takes account of the diversity of LB women
• developing solid evaluation mechanisms for interventions made to provide an evidence base for future action.

We believe that these objectives will increase the number of LB women attending for screening and provide insights that can form a platform for future interventions, developments and policy change as necessary. Ultimately, it is expected that the project will lead to the increased detection of abnormalities in their early stages, therefore reducing their risk of cervical cancer.

Lead Researcher: Dr Mary Braine

Acquired brain injury (ABI) can be a sudden, dramatic and sometimes fatal event that instantly disrupts the lives of the patient and their families. ABI causes a variety of deficits including motor, cognitive, functional, emotional and behavioural. Whilst the extent of these deficits and their recovery may vary, and the affect of these injuries on the family has been the subject of much research over the past three decades, the specific impact that challenging behaviour has as a consequence of the ABI however, is sparse.

A descriptive phenomenological study set out to describe the experiences of those immediate family members of persons who have suffered acquired brain injury and present with challenging behaviours. Five carers who met the inclusion criteria participated in the study and were recruited from a regional neuroscience centre. The experiences were collected through in-depth, face-to-face semi-structured interviews with family members of persons with acquired brain injury. The interviews were recorded and transcribed verbatim to provide textual descriptions of the family members’ experiences. Analysis provided rich descriptions of the family members’ experiences.

Seven interrelated themes emerged through data analysis: one theme described the challenging behaviours of the people with acquired brain injury and six themes describe the experiences of the family members; emotional turmoil that these behaviours engendered, a profound sense of loss, concerns for the future for themselves as well as the injured, a sense of loneliness, the affect on family functioning and finally the family members coping and adapting to the behaviours. The interview data also revealed that with time the experiences expressed were not dissipated.

This study contributes to healthcare providers' understanding and knowledge of families experience of living with a person with acquired brain injured and their cognitive, emotional and behaviour sequelae, and supports the need for continued research in this area.

Publications:

Braine M. (2010) The experience of living with a family member with challenging behaviour post acquired brain injury, Journal of Neuroscience Nursing In press.

Developing an innovative educational course in cardiac care
Funded by: British Heart Foundation
Lead Researcher: Dr Ian Jones, Prof Martin Johnson

Funded by: Action Medical Research

Lead researcher: Dr Janelle Yorke, Dr Shakeeb Mossavi, Prof Carol Haigh (Manchester Metropolitan), Prof Paul Jones, Dr George Man Kwong (Pennine Acute Trust), Ms Anne-Marie Russell (University of Huddersfield)

This research is about testing validity and reliability of a new questionnaire, Dyspnoea-12, that we developed in a previous study. It is hoped that the Dyspnoea-12 will assist in the assessment and management of breathlessness, and be used in future research where breathlessness needs to be measured.

Over 300 patients with chronic respiratory disease are being recruited. This project involves collaboration with Pennine Acute Trust, St George’s Medical School London and Imperial College London.

Funded by: Royal Brompton and Harefield NHS Foundation Trust, Clinical Research Committee

Lead researcher: Dr Janelle Yorke, Dr Shakeeb Moosavi, Dr Caroline Shuldham, Prof Paul Jones

Funded by: Action Medical Research

Lead researcher: Dr Janelle Yorke, AM Russell

Funded by: British Renal Society

Lead Researchers: Dr Paula Ormandy (Principal Investigator) ,
Dr Claire Hulme, Dr Ann-Louise Caress, Jane Macdonald, Dr Donal O’Donoghue, Dennis Crane

Innovative studies to identify and measure the information needs of patients (cancer and asthma patients) highlight that patients have priorities and preferences with regard to what information they need and when.

The premise of this study was that CKD patients with end-stage renal failure share similar traits and have preferred key information topics, which are of a priority to them, at different times during progression of their disease. The study used a cross-sectional survey design combining semi-structured interviews to develop and test the validity of a renal–specific Information Needs Questionnaire (INQ) using a Thurstonian paired comparisons approach.

The study generated an evidence base to inform multi-professionals’ caring for CKD patients highlighting the different patient information needs, most important topic areas, preferences for information provision and variations across groups of patients.

On a national level the study findings generated a useful and valuable evidence base to inform and feed into the current Department of Health ‘Renal Services Information Strategy’ initiatives and information provision within the National Institute for Clinical Excellence (2008) Chronic Kidney Disease: National clinical guideline guidelines for early identification and management in adults in primary and secondary care

Publications:

Ormandy P. (2010) Defining information need in health – assimilating complex theories from Information Science. Health Expectations. (Published on-line before print 9 June, doi:10.1111/j.1369-7625.2010.00598.x).

Ormandy P. (2008) Information topics important to chronic kidney disease patients: a systematic review. Journal of Renal Care,  Mar, 34(1): 19-27 (pdf available)

Ormandy P., Hulme C., Caress AL., Macdonald J., O’Donoghue D., Crane D. (2007) Identifying chronic kidney disease patients’ priorities and preferences for information topics. Salford Centre for Nursing, Midwifery and Collaborative Research, Institute for Health and Social Care Research, University of Salford. Report, April: ISBN 9781905732265

Funded by: EDTNA/ERCA

Lead Researchers: Monique Elseviers, Jean-Yves De Vos (EPD Co-ordinators, Belgium), EDTNA/ERCA Research Board Members, Dr Paula Ormandy

The European Practice Database (EPD) was a longitudinal demographic project to generate a body of information and knowledge of multi-professional renal care and practice across and throughout Europe.

Data was collected on a three year cycle and renal care practice, patient numbers and treatment is reported, changes identified and guidelines of good practice generated where indicated. New countries were enrolled each year and the data gathered is compared and contrasted, first on a national level with other centres then collectively on a European level as a country.

Members of the multi-professional Research Board for the Association along with the national co-ordinators analysed and discussed the results then disseminated findings at a local, national and international level to promote a high standard of renal care practice.

Publications:

Zampieron A., Ormandy P., Elseviers M., De Vos J.Y., Kafkia T. (2009) Comparison of nephrology nursing interventions across five European countries. Journal of Renal Care, Mar; 35 (1): 24-32

Harrington M., Elseviers M., De Vos JY., Zampieron A., Ormandy P., Kafkia T. (2006) The Research Board of EDTNA/ERCA: Research Activities and Deliverables. EDTNA/ERCA Journal,  Jan-Mar,  XXXI1 (1): 4-7

Elseviers M., De Vos JY., Harrington M., Zampieron A., Ormandy P., Kafkia T. (2006) Comparison of renal care practice in Europe: centre and patients characteristics. EDTNA/ERCA  Journal  Jan-Mar, XXXI1 (1): 8-13

Zampieron A., Elseviers M., Ormandy P., Vlaminck H., De Vos JY., Kafkia T., Lindley E., Harrington M. (2006) Development of indicators to measure differences of renal nurse activities between  European countries. EDTNA/ERCA Journal Jan-Mar, XXXI1 (1): 14-19

De Vos JY., Elseviers M., Harrington M., Zampieron A., Vlaminck H., Ormandy P., Kafkia T.  (2006) European Practice in treatment modalities offered in haemodialysis. EDTNA/ERCA Journal Jan-Mar, XXXI1 (1): 20-23 (pdf available with load onto USIR)

Kafkia T., De Vos JY., Elseviers M., Zampieron A., Ormandy P., Harrington M. (2006) Renal Transplant practice in Europe. EDTNA/ERCA Journal Jan-Mar, XXXI1 (1): 33-37

De Vos JY., Elseviers M., Harrington M., Zampieron A., Vlaminck H., Ormandy P., Kafkia T. (2006) Infection control practice across Europe. EDTNA/ERCA Journal Jan-Mar,  XXXI1 (1): 38-41

Elseviers M., De Vos JY., Harrington M., Zampieron A., Ormandy P., Kafkia T. (2006) European study on epidemiology and management of hepatitis C in the haemodialysis population: seroconversion during a one year observation period. EDTNA/ERCA Journal Jan-Mar, XXXI1 (1): 42-44

Knoll J., Demol A., Elseviers M., Harrington M., De Vos JY., Zampieron A., Ormandy P., Kafkia T. (2006) Organisation of Paediatric Renal Care in Europe: results of the PAC study.  EDTNA/ERCA Journal Jan-Mar, XXXI1 (1): 51-56   

Demol A., Knoll J., Elseviers M., Harrington M., De Vos JY., Zampieron A., Ormandy P., Kafkia T. (2006) Access Care in children treated with dialysis: results of the PAC study. EDTNA/ERCA Journal Jan-Mar, XXXI1 (1): 57-62

 

Psychological interventions for adults with asthma: a systematic review (Cochrane systematic review)

Lead researcher: Dr Janelle Yorke (j.yorke@salford.ac.uk), Dr S Fleming, Dr C Shuldham

Psychological factors may influence the symptoms and management of asthma in children in many ways. It is, therefore, suggested that psychological interventions may be appropriate for this population. This project involves a systematic review assessing the efficacy of psychological interventions in improving health outcomes for children with asthma. Twelve studies, involving 588 children, were included in the review. This review was unable to draw firm conclusions for the role of psychological interventions for children with asthma.

We recommend that valid outcome measures for evaluating the effectiveness of psychological interventions for children with asthma need to address adjustment to and coping with asthma, as well as other psychological indicators. This review is up-dated on a yearly basis in collaboration with Royal Brompton and Harefield NHS Foundation Trust and the Cochrane Collaboration – Airways Group.

Yorke J, Fleming SL, Shuldham CM. Psychological interventions for adults with asthma. Cochrane Database of Systematic Reviews 2006; Issue 1 (Up-dated 2007)..

Yorke J, Fleming S, Shuldham C. Psychological interventions for adults with asthma: A systematic review. Respiratory Medicine 2007; 101:1-4.

Funded by: Teesside Primary Care Research and Development

Lead researcher: Dr Janelle Yorke, Dr S Fleming, Dr C Shuldham

The purpose of this study was to conduct a systematic review of randomized controlled trials where the efficacy of psychological interventions in modifying health and behavioural outcomes for adults with asthma was investigated. Fourteen studies, involving 617 adults, were included in the review.

Some promising results did emerge from meta-analyses performed. However, due to heterogeneity and the low quality of included studies, this review was unable to draw firm conclusions for the role of psychological interventions in asthma. We recommend that larger and well-conducted randomised trials use valid outcome measures to evaluate the effectiveness of psychological interventions for adults with asthma.

This review is up-dated on a yearly basis in collaboration with Royal Brompton and Harefield NHS Foundation Trust and the Cochrane Collaboration – Airways Group.

Publications:

Yorke J, Fleming S, Shuldham C. Psychological interventions for children with asthma. Cochrane Database of Systematic Reviews, Issue 4 (Up-dates 2006; 2007).

Yorke J, Fleming S, Shuldham C. A systematic review of psychological interventions for children with asthma. Paediatric Pulmonology 2007; 42:114-124.

Shuldham C, Fleming S, Yorke J. Undertaking a systematic review: the road to successful completion. Journal of Research in Nursing 2008; 13(4):182-198.

 

Family Therapy for children with asthma (Cochrane Systematic Review)

Funded by: Royal Brompton and Harefield NHS Foundation Trust

Lead researcher: Dr Janelle Yorke, Dr C Shuldham