Huntington's disease: current epidemiology and pharmacological management in UK primary care.

BACKGROUND: Recent debate suggests Huntington's disease (HD) may be more prevalent than previously reported. In addition, relatively little is known about current disease management. This study aims to provide epidemiological data and describe the pharmacological management of HD in the United Kingdom. METHODS: A primary care research database was accessed to identify incident and prevalent HD cases between January 1, 2004, and December 31, 2008. Patients with Read codes denoting a definite diagnosis or possible diagnosis, and undiagnosed patients with a positive family history were identified. A subset of patients with a definite diagnosis and prescribed medication indicating symptom onset was also identified. Epidemiological data were estimated. Pharmacological prescriptions to HD patients from 2004 to 2008 were identified, and prescription frequencies were grouped according to the British National Formulary categories. RESULTS: HD incidence estimates ranged from 0.44 to 0.78 per 100,000 person-years, and HD prevalence ranged from 5.96 to 6.54 per 100,000 of the population. Forty-four percent of pharmacological prescriptions targeted the central nervous system. Nearly half of the HD patients were prescribed antidepressants, and over 40% were prescribed analgesics. CONCLUSIONS: Although prevalence estimates fell short of figures suggested in recent debate, it is feasible that the true prevalence may be much higher than previously reported. Pharmacological management appears to rely heavily on central nervous system drugs and nutrition support. Many of these drugs are prescribed to HD patients for reasons other than the medication's primary use. Further work is required to evaluate the impact of alternative management strategies, such as therapist intervention, counselling, and organisation support, on the patients' quality of life.

Effects of a physiotherapy and occupational therapy intervention on mobility and activity in care home residents: a cluster randomised controlled trial.

OBJECTIVE: To compare the clinical effectiveness of a programme of physiotherapy and occupational therapy with standard care in care home residents who have mobility limitations and are dependent in performing activities of daily living. DESIGN: Cluster randomised controlled trial, with random allocation at the level of care home. SETTING: Care homes within the NHS South Birmingham primary care trust and the NHS Birmingham East and North primary care trust that had more than five beds and provided for people in the care categories "physical disability" and "older people." PARTICIPANTS: Care home residents with mobility limitations, limitations in activities of daily living (as screened by the Barthel index), and not receiving end of life care were eligible to take part in the study. INTERVENTION: A targeted three month occupational therapy and physiotherapy programme. MAIN OUTCOME MEASURES: Scores on the Barthel index and the Rivermead mobility index. RESULTS: 24 of 77 nursing and residential homes that catered for residents with mobility limitations and dependency for activities of daily living were selected for study: 12 were randomly allocated to the intervention arm (128 residents, mean age 86 years) and 12 to the control arm (121 residents, mean age 84 years). Participants were evaluated by independent assessors blind to study arm allocation before randomisation (0 months), three months after randomisation (at the end of the treatment period for patients who received the intervention), and again at six months after randomisation. After adjusting for home effect and baseline characteristics, no significant differences were found in mean Barthel index scores at six months post-randomisation between treatment arms (mean effect 0.08, 95% confidence interval -1.14 to 1.30; P=0.90), across assessments (-0.01, -0.63 to 0.60; P=0.96), or in the interaction between assessment and intervention (0.42, -0.48 to 1.32; P=0.36). Similarly, no significant differences were found in the mean Rivermead mobility index scores between treatment arms (0.62, -0.51 to 1.76; P=0.28), across assessments (-0.15, -0.65 to 0.35; P=0.55), or interaction (0.71, -0.02 to 1.44; P=0.06). CONCLUSIONS: The three month occupational therapy and physiotherapy programme had no significant effect on mobility and independence. On the other hand, the variation in residents' functional ability, the prevalence of cognitive impairment, and the prevalence of depression were considerably higher in this sample than expected on the basis of previous work. Further research to clarify the efficacy of occupational therapy and physiotherapy is required if access to therapy services is to be recommended in this population. TRIAL REGISTRATION: ISRCTN79859980.

An investigation into the utility of the Stroke Aphasic Depression Questionnaire (SADQ) in care home settings.

OBJECTIVE: To assess the utility of the Stroke Aphasia Depression Scale (SADQ) to identify emotional distress among individuals living in a care home setting. DESIGN: A prospective comparison of the SADQ and the depression subsection of the Hospital Anxiety and Depression Scale (HADS). SETTING: Care homes in Oxfordshire. PARTICIPANTS: Eighty-two care home residents without major communication or cognitive problems. MEASURES: Participants completed the HADS. The SADQ was completed on behalf of each resident by his or her principal carer. RESULTS: Spearman's rank correlation between the two measures was statistically significant (r = 0.447, P < 0.01). Receiver operator characteristics plots revealed an optimal cut-off point of 14 on the SADQ which gave sensitivity and specificity of 77% and 78% respectively. CONCLUSION: The SADQ, an observational measure, can identify emotional distress in non-aphasic patients in a care home setting. It would be reasonable to use it with people with communication and cognitive problems who are unable to take part in conventional assessments.