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Functional Vision (FV) and Vision-related quality of life (VQoL) of children and young people with visual impairment: development of age-appropriate patient reported outcome measures (PROMs) for routine use in paediatric ophthalmology

The recent surge in development and NHS application of vision-specific patient-reported outcome measures for adults has not been matched in paediatric ophthalmology. In 2007 we started a programme of research investigating the impact of childhood visual impairment, in which we have developed two child-appropriate self-report patient reported outcome measures (PROMs) for children: a vision-related quality of life (VQoL) instrument and a complementary functional vision (FV) and instrument. These allow children and young people to describe and quantify the impact on their everyday lives of both their visual disability and the health care they receive. These instruments are for 10-15 year olds, chosen for our ‘foundation’ research to develop conceptual frameworks and child-centred methodology. We are currently continuing this research to adapt these instruments to children aged 6-9 years and young people aged 16-18 years, providing a suite of age-appropriate instruments for the whole population. Our research will provide a means of supporting children and young people with visual disability by giving them a voice in decisions about clinical care and in evaluation of treatments. Rather than a new therapy, we are developing tools that will enhance the quality of life and well-being of children and young people by enabling them to be partners in both the planning and evaluation of their health care- both in NHS routine practice and in the context of trials of new treatments for blinding disorders.

Author: Val Tadic - UCL Institute of Child Health

Tel: 0207 905 2807. Email:

The child’s perspective of health and health care: Strategies for investigating self-reported outcomes and experience in children

There has been an growing national initiative for development and application of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) as a means of obtaining patient-led assessment of their health (that is PROMs) and healthcare (that is PREMs). However, the advances in the routine clinical use of PROMs and PREMs in the NHS with adult patients have not been matched in paediatric health services. With these issues in mind, we (Val Tadic, Rachel Knowles and Jugnoo Rahi) have recently co-established a cross- disciplinary ‘Child-Reported Outcomes and Experience’ working group within our MRC Centre of Epidemiology for Child Health, undertaking activities aimed specifically at bridging, cross-fertilising and extending our on-going research in patient reported outcomes and experience of children with visual impairment and those with congenital heart defects. As part of this initiative, we also set out to organise a cross-disciplinary workshop on PROMs and PREMs in paediatric health services, with a view to reach out to other clinical and academic colleagues and encourage the discussion and exchange on the methodologies and routine use of PROMs and PREMs for children. The workshop was aimed specifically at academic and clinical professionals involved in PROM and PREM initiatives within the MRC Centre of Epidemiology for Child Health, UCL Institute of Child Health (ICH) and two of its clinical partners, Great Ormond Street Hospital (GOSH) and Moorfields Eye Hospital (MEH), with whom links have already been established in this area. The invited audience and participants included parent representatives of the families attending GOSH.

Author: Val Tadic - UCL Institute of Child Health

Tel: . Email:

A qualitative evaluation of influential factors in promoting successful involvement of consumers in research.

Retrospective study of a research project which successfully involved consumers. Participants were interviewed (consumers, researchers, commissioners), documents analysed. Data was analysed to extract key themes which influenced project's success.

Author: Rosemary Telford - School of Health and Related Research (ScHARR) and Community Health Sheffield NHS Trust (CHS)

Tel: 0114 222 0754/222 0776. Email:

Successful Consumer Involvement in Research: An evaluation using consensus generated criteria

The objective of the research is to generate a robust audit tool to measure the successful involvement of consumers in research by: developing consensus among researchers and consumers on principles of successful consumer involvement in research, and developing consensus on measurable indicators of each principle. The developed audit tool will be used to identify NHS Projects which meet the agreed principles of successful consumer involvement in research, by carrying out a national postal audit of current or recently completed NHS Research projects.

Author: Rosemary Telford - University of Sheffield ScHARR, Public Health

Tel: 0114 222 0754. Email:


Feasibility study for an RCT of water softeners in the treatment of atopic eczema

This is a small pilot study involving 17 children with atopic eczema. They have been randomised to receive either an ion-exchange water softener or a dummy unit. All children have been enrolled for a period of 12 weeks. The main outcome measure is disease severity as assessed using the Six Area, Six Signs Atopic Dermatitis Scale.

Author: Kim Thomas - Centre of Evidence Based Dermatology



Growing older with learning disabilities

The project is part of a large programme of work looking at the needs of older people with learning disabilities.

Author: David Thompson - The Foundation for People with Learning Disabilities

Tel: 0207 8020 300.


Shared decision-making and risk communication in general practice

A randomised trial design with crossover was employed for this study. Participating doctors were randomised to receive either risk communication training OR shared decision making, AND THEN received that alternative intervention at a later stage of the study. The study incorporated systematic literature reviews, psychometric evaluation of outcome measures, and quantitative, qualitative and health economic analyses of a cluster randomised trial of professional skill development, all informed by consumer and patient engagement. The work was produced by a wide collaboration led by researchers from the Department of General Practice, University of Wales College of Medicine, Cardiff, including a consumers' advisory group and a patients' association. The study participants were 20 general practitioners from Gwent, their practice staff, and almost 800 patients in these practices.

Author: Hazel Thornton - Consumers' Advisory Group for Clinical Trials (CAG-CT)

Tel: 01206 728178. Email:

A survey of breast cancer patients' views on entry into several clinical studies.

Ninety six patients who had undergone surgery for invasive breast cancer between January and June 2000 in a single Breast Unit were sent a questionnaire seeking their views on study participation, including whether there should be limits to the number they might wish to be involved in. Questionnaires were sent out with an explanatory letter and a self addressed envelope for replies. Each questionnaire consisted of nine questions requiring yes/no answers but where appropriate there was opportunity for patients to write their own comments. An analysis of responses was undertaken.

Author: Hazel Thornton - Independent advocate

Tel: 01206 728178. Email:

CaTLET (Cancer Trials Leaflet Evaluation Tool) - An evaluation of information leaflets for patients entering cancer trials. This was a pilot study producing provisional findings: further development is planned.

CaTLET is a pilot project and it is anticipated that this will lead on to a generic version TriLET (Trial leaflet Evaluation Tool) which will be developed and validated in a more rigorous project. The setting for this research was the Faculty of Medicine at the University of Leicester, and hospitals in the Leicester area. An evaluation tool, modeled on the DISCERN instrument format, was drafted, initially based on quality criteria for patient information developed by CHIQ and a literature review of patients` preferences for information when entering clinical trials. This draft version was then sent out for consultation with a range of patients` voluntary organisations, patients` advocates, ethics committee representatives, oncologists, information specialists, and the Consumers` Advisory Group for Clinical Trials. The comments received during the consultation period were synthesised and used to modify the draft version. The final version in this pilot project was named CaTLET . The test-retest reliability and inter-rater reliability of the instrument was established by a multi-disciplinary team. CaTLET, together with the DISCERN instrument, was then used to appraise more than 50 patient information leaflets currently being used in cancer trials in a variety of centres in the UK. Results suggested large variability in the quality of information leaflets given to patients and indicated areas where significant improvements could be made. Many patient information leaflets fail to meet basic quality criteria and many do not address patients` needs as fully as they should.

Author: Hazel Thornton - The Consumers' Advisory Group for Clinical Trials

Tel: 01206 728 178. Email:


ATAC Trial (Arimidex, Tamoxifen, Alone, and in Combination. (An adjuvant drug trial for women with early post-menopausal breast cancer.)

The ATAC Trial was a three-arm, multi-centre, randomised, double-blind placebo controlled trial. The CAG-CT was invited 13th February 1996, by the Trial Chairman on behalf of its steering committee, to comment on the draft trial protocol, then near to finalisation. Copies of the protocols were sent to members of the group on 16th February. Collated comments were required by 27th February. Collated comments were sent 26th February. A further opportunity to comment on the patient information sheet was given in May 1996, required and sent off by mid July 1996

Author: Hazel Thornton - Consumers` Advisory Group for Clinical Trials (CAG-CT

Tel: 01206 728178. Email: