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Projects

Health-Related Quality of Life Measurement (HRQoL)

Research interests in this area include:

1. Development, psychometric evaluation and clinical applications of HRQoL instruments. Recent work involved development of:
   • Alzheimer's specific quality of life measure, the Community Dementia Quality of Life Profile (CDQLP), in collaboration with the Department of Geriatric Medicine, College of Medicine, Cardiff University
   • Renal specific measure, the Renal Quality of Life Profile (RQLP), in collaboration with several centres in the UK such as Cardiff, Oxford and Birmingham
   • Palliative care specific quality of life instrument, the Cardiff Short-Form McGill Quality of Life Questionnaire, in collaboration with the Department of Palliative Medicine, College of Medicine, Cardiff University
   • Methodologies to investigate the sensitivity of a number of PD-specific HRQoL measures (eg PDQ-39 and PIMS); evaluation of the value and responsiveness of generic HRQoL instruments (ie UKSIP and SF-36) in Parkinson's Disease; investigation of the prevalence of depression and its treatment in patients with Parkinson's Disease using GPMD database - in collaboration with the Parkinson's Disease clinics including Harold Wood Hospital, Romford, Essex and Ashford Hospital, Middlesex, and GlaxoSmithKline
   • Cross-cultural adaptation of existing HRQoL instruments in other languages - successful work in this area was recently completed in the Turkish culture; research is currently being carried out in the Arabic language and culture.
2. Assessment of HRQoL as a primary or secondary end-point in clinical trials of pharmaceuticals. In collaboration with a number of pharmaceutical companies, has been involved in the design of HRQoL protocol and subsequently execution and analysis and report writing of clinical trials results in areas such as cardiovascular, renal, oncology and dermatology.
3. Incorporation of HRQoL assessment in routine practice an as aid to clinical decision-making. Until recently almost all the activities in the field of HRQoL research was focused on development, validation and measurement of end-points in clinical trials. However, from now on the shift of emphasis will be on practical applications and facilitating clinical decision-making and policy decisions. In collaboration with the Palliative Care Clinic at the cancer hospital in Cardiff, a number of different approaches and methodologies for measuring HRQoL in routine practice are being tested as instruments for investigating their usefulness as an aid to clinical decision-making. The benefits of the use of HRQoL information of patients in day to day clinical practice include establishment of a dialogue between the patient and professionals, enhancement of doctor-patient relationship, incorporation of medical and non-medical factors of a disease in clinical decision-making, involvement of the patients in their own health-care decision-making, improvement in concordance, improvement in compliance with treatment and optimisation of outcomes.

Pharmacoeconomics

Comprehensive economic evaluation of medicines should take into account cost and effectiveness of both quality and quantity of life. In collaboration with the Drug Safety Research Unit in Southampton, methodologies are being prepared to investigate the socioeconomic impact of adverse drug reactions of cardiovascular agents including cholesterol lowering drugs.

Medicines Information Helpline for Patients with Parkinson's Disease and their Carers

We have been developing a Medicines Information Helpline for the past three years. Funding is largely from the Department of Health through the Parkinsons Disease Society (PDS) of the United Kingdom. An alliance between the CSER and the Welsh Medicines Information Centre (WMIC) was formed in spring 2002 to enable a six-month pilot of this Helpline. The WMIC is a well-established Centre with an excellent reputation for providing information on the use of medicines to healthcare professionals. The development of this Helpline provides an exciting opportunity to extend this service to a group of patients and their carers.

The Helpline is the only one of its kind in Europe and there is strong commitment from all parties involved to sustain the delivery of reliable and easily accessible information to all patients with Parkinson's in the UK, and at least 10,000-12,000 new cases diagnosed annually. The number of people with Parkinson's in Wales is estimated at a minimum of 6,000. No cure currently exists and medical treatment is directed towards alleviating symptoms. As a result, patients may be receiving multiple drugs and may experience a number of complications. Therefore, patients' good knowledge of their medication is of paramount importance in managing their treatment. By empowering patients, the Helpline will help to achieve the objectives of maintenance and improvement of the quality of life.

It is hoped that this pioneering work will set the agenda for the provision of medicines information to patients not only in the UK but also for the whole of Europe. Furthermore, in the case of the UK, it can feed into the National Service Frameworks (NSE) for ‘long term conditions’ putting Parkinson's in the forefront.

Welsh Movement Disorder eNetwork (WMDeN)

The WMDeN is an innovative, electronic web-based database, hosted by Information Systems for Clinical Organisations (ISCO) at Velindre Hospital.It allows patient consultation details to be recorded direct at the point of care. It was established in 2001, as a cross-Wales project, the only one of its kind for Movement Disorders in Europe.

Two clinics, in Cardiff and Bridgend, have been actively using the database since 2001 and a third, Bronllys, has recently joined. Over 1200 patients are currently registered.

The WMDeN is a relational database which is accessed by authorised users over a secure internet connection. Data entered by users is stored on ISCO secure servers. Users access and enter patient data through multiple linked screens. It incorporates the functionality of recording quality of life data, drug treatments and complications as well as the consultation annotation and has a PDNS section for home visits.

It provides data for epidemiological and pharmaco-epidemiological studies and can be used to select patients for clinical trials. A built-in data analysis facility allows practitioners and researchers to analyse demographic and medication data. The administrative workload has been reduced, with the time period in which clinic letters are sent to GPs being greatly improved, from two weeks to 24 hours.

Education and Training

Development of instrument to evaluate teaching and learning styles

Compendium of Quality of Life Instrument

The Compendium of Quality of Life Instruments Working Group was established in 1995 as one of the initial activities of the Centre for Socioeconomic Research at the University of Wales, Cardiff. The aim of the development of the Compendium was to provide a sourcebook of original questionnaires and related information for those working and/or interested in the field of health related-quality of life. The first seven editions of the Compendium contain over 210 questionnaires and translations covering a broad spectrum of disorders, with sections devoted specifically to caregivers, children, the elderly women and economic measures. We are currently working on the eighth and ninth editions.

The Compendium is of tremendous use for anybody interested in this field or involved in clinical evaluation of medical treatments (e.g. comparing treatment modalities or treatment regimes; monitoring therapeutic outcomes; assessing quality of life in disease management). Information on each instrument and its cross cultural adaptations is featured complimented by a relevant bibliography and a copy of the instrument itself.

For information on purchasing the Compendium contact: