Involving consumers in a needs-led research programme: a pilot project.

OBJECTIVES: To describe the methods used for involving consumers in a needs-led health research programme, and to discuss facilitators, barriers and goals. DESIGN: In a short action research pilot study, we involved consumers in all stages of the Health Technology Assessment (HTA) Programme: identifying and prioritizing research topics; commissioning and reporting research; and communicating openly about the programme. We drew on the experience of campaigning, self-help and patients' representative groups, national charities, health information services, consumer researchers and journalists for various tasks. We explored consumer literature as a potential source for research questions, and as a route for disseminating research findings. These innovations were complemented by training, one-to-one support and discussion. A reflective approach included interviews with consumers, co-ordinating staff, external observers and other programme contributors, document analysis and multidisciplinary discussion (including consumers) amongst programme contributors. RESULTS: When seeking research topics, face-to-face discussion with a consumer group was more productive than scanning consumer research reports or contacting consumer health information services. Consumers were willing and able to play active roles as panel members in refining and prioritizing topics, and in commenting on research plans and reports. Training programmes for consumer involvement in service planning were readily adapted for a research programme. Challenges to be overcome were cultural divides, language barriers and a need for skill development amongst consumers and others. Involving consumers highlighted a need for support and training for all contributors to the programme. CONCLUSIONS: Consumers made unique contributions to the HTA Programme. Their involvement exposed processes which needed further thought and development. Consumer involvement benefited from the National Co-ordinating Centre for Health Technology Assessment (NCCHTA) staff being comfortable with innovation, participative development and team learning. Neither recruitment nor research capacity were insurmountable challenges, but ongoing effort is required if consumer involvement is to be sustained.

Development of an aromatherapy service at a Cancer Centre.

The aromatherapy service at the Cancer Support and Information Centre (CSIC) of this regional Cancer Centre has been continually assessed since its inception in 1993. New methods of assessing complementary therapies, based on the 'therapy-as-practised', have been explored. The present study evaluates the service following changes made after an initial pilot. The professional aromatherapist developed an evaluation tool, and formal questionnaires were limited to the Hospital Anxiety and Depression Scale (HADS). HADS was completed before and after a course of six aromatherapy sessions. Of 89 patients referred, 58 patients completed the six sessions. Referrals were made by health professionals working in the Cancer Centre and in the CSIC. The majority of patients were female with breast cancer and were receiving radical oncological treatment. Tension, stress and anxiety/fear were the most common reasons for referral, and this was reflected in high initial HADS scores. There were significant improvements in HADS scores in the 58 patients completing the course (mean anxiety, depression, and combined scores dropped from 8.9 to 6.2 6.1 to 4.0 and 15.0 to 10.2, respectively, P < 0.001). Fifty per cent or more of the sample reported a significant improvement in the eight most commonly assessed symptoms. The therapist was initially cautious about using questionnaires, but she gained confidence in using HADS as an assessment tool. The areas covered by her own evaluation tools were broadly comparable to established instruments such as the EORTC QLQ-C30. We conclude that aromatherapy massage has a role in reducing psychological distress, and improving symptom control in cancer patients. Further service evaluation is needed to promote appropriate referral and effective planning of treatment, and to justify cost. Given the multifaceted nature of complementary therapies, the need to develop new research methodologies is acknowledged.

Type of mutation in the neurofibromatosis type 2 gene (NF2) frequently determines severity of disease.

The gene predisposing to neurofibromatosis type 2 (NF2) on human chromosome 22 has revealed a wide variety of different mutations in NF2 individuals. These patients display a marked variability in clinical presentation, ranging from very severe disease with numerous tumors at a young age to a relatively mild condition much later in life. To investigate whether this phenotypic heterogeneity is determined by the type of mutation in NF2, we have collected clinical information on 111 NF2 cases from 73 different families on whom we have performed mutation screening in this gene. Sixty-seven individuals (56.2%) from 41 of these kindreds revealed 36 different putative disease-causing mutations. These include 26 proposed protein-truncating alterations (frameshift deletions/insertions and nonsense mutations), 6 splice-site mutations, 2 missense mutations, 1 base substitution in the 3' UTR of the NF2 cDNA, and a single 3-bp in-frame insertion. Seventeen of these mutations are novel, whereas the remaining 19 have been described previously in other NF2 individuals or sporadic tumors. When individuals harboring protein-truncating mutations are compared with cases with single codon alterations, a significant correlation (P < .001) with clinical outcome is observed. Twenty-four of 28 patients with mutations that cause premature truncation of the NF2 protein, schwannomin, present with severe phenotypes. In contrast, all 16 cases from three families with mutations that affect only a single amino acid have mild NF2. These data provide conclusive evidence that a phenotype/genotype correlation exists for certain NF2 mutations.

Spondyloepimetaphyseal dysplasia with joint laxity (SEMDJL): clinical and radiological findings in a Guatemalan patient.

We report on a patient of Guatemalan descent whose physical and radiological findings are consistent with a diagnosis of spondyloepimetaphyseal dysplasia with joint laxity (SEMDJL). This is a rare, autosomal recessive skeletal dysplasia with short limbs, severe scoliosis, high dorsal kyphoscoliosis, and joint hypermobility. Most described patients with SEMDJL are from the Afrikaans-speaking communities of South Africa. Patients with SEMDJL have an oval face, prominent eyes, and blue sclerae. Our patient's height and weight were below the fifth centile. She had prominent eyes with blue sclerae, a narrow, high-arched palate, pectus carinatum, severe scoliosis, and hyperextensibility and instability of most joints, with limited extension and supination of her elbows. A review of her roentgenograms showed severe scoliosis, poorly developed ischial, iliac, and pubic bones, a "bat-like" appearance of the iliac bones, "dysplastic" acetabulum, minimal metaphyseal and epiphyseal abnormalities at the knees, deformation of the proximal femoral metaphyses, and generalized brachydactyly of the hands and feet. This disorder may be more common than previously thought, and the diagnosis should be considered in any child with a dwarfing condition and joint laxity.

Community based cancer support groups: an undervalued resource?

A pilot study was set up and to identify the local community based cancer support groups and to examine the links these groups and the staff of the regional and district general hospitals. The objective was to evaluate the current role of cancer support groups and identify strategies which would improve communication. Results of the study indicated that local support groups played an important role in providing support to cancer patients in the community. Hospital staff were not well informed about support groups and felt uncertain about their use as a resource for patients. There was a need to improve communication between local cancer support groups and hospital staff in order to offer a more comprehensive service to patients. Any strategies developed to improve communication depend on finding ways in which lay care and professional health care can work together. Specific recommendations were made as a result of the research and a number of initiatives undertaken, including a local directory of community resources and a forum where representatives from the local support groups can meet with hospital staff.

Pain relief after tonsillectomy in adults: intramuscular diclofenac and papaveretum compared.

A wide variety of surgical and pharmacological methods have been described in an attempt to reduce pain after tonsillectomy, with conflicting results. Opiates are still widely used, despite unwanted side-effects. Recently the non-steroidal anti-inflammatory drugs have been shown to be effective against a variety of post-operative pains. Diclofenac is effective in both children and adults in the relief of pain after tonsillectomy when administered rectally, but absorption is variable, and suppositories are not widely accepted in the UK. The present double-blind study compared a single intramuscular dose of diclofenac with papaveretum in adults undergoing tonsillectomy. Post-operatively, the patients who received diclofenac had less pain and started drinking significantly sooner than the control group. There were no undesirable side-effects. Intramuscular diclofenac is superior to papaveretum in the relief of pain in adults undergoing tonsillectomy.