Measuring autonomy in disabled people: Validation of a new scale in a UK population.

OBJECTIVE: To evaluate the validity and reliability of an English version of the Impact on Participation and Autonomy Questionnaire (IPA). The original Dutch IPA has been shown to load onto five factors. DESIGN: A validation study. SETTING: Outpatients clinics and people's homes. SUBJECTS: Two hundred and thirteen people with multiple sclerosis, rheumatoid arthritis, spinal cord injury, and general practice attendees, stratified by level of disability (median age 54, 42% male, 58% female). INCLUSION CRITERIA: English as first language, aged 18-75, Mental Status Questionnaire score >6. INTERVENTIONS: Self- and interviewer-administered outcome measures. MAIN MEASURES: IPA, including one new item (66 participants completed the IPA on a second occasion). OTHER MEASURES: Short Form-36 Health Survey (SF-36), London Handicap Scale, three domains of the Functional Limitations Profile (FLP): household management, social integration, emotion. RESULTS: Confirmatory factor analysis confirmed the construct validity of the IPA (Normal Fit Index = 0.98, Comparative Fit Index = 0.99), indicating a good fit to the model. Convergent and discriminant validity were confirmed by the predicted associations, or lack of, with the exception of a poor association between the 'social life/relationships' IPA subscale and FLP-emotion. Internal reliability of the IPA was confirmed (Cronbach alphas >0.8; item-total correlations for all subscales >0.5). Test-retest reliability was confirmed for all items (weighted kappas >0.6) and subscales (intraclass correlation coefficients >0.90). CONCLUSIONS: The English IPA is a valid, reliable and acceptable measure of participation and autonomy in people with a range of conditions and can make a unique and fundamental contribution to outcome assessment. Further research is required to examine the responsiveness of the IPA to change over time, its clinical utility and suitability for use with people from ethnic minorities and with older people.

Evaluation of text telephones designed for people with impaired hearing or speech.

PURPOSE: The primary aim of this study was to assess a range of desktop text telephones and to provide comparative data to enable healthcare professionals and users to make informed choices when selecting products. Our second objective was to highlight the effect of different product features on ease of communication. METHODS: We used three methods of evaluation. (1) User trials of seven desktop textphones were carried out by 28 people. (2) The same desktop textphones, along with three portable models, were appraised by two independent assessors. (3) All 10 products were discussed by groups of hearing and hearing-impaired users-112 in all. RESULTS AND CONCLUSIONS: Participant ratings, user comments, and observations of sample conversations all revealed that ease of communication was greatly influenced by the type of technology employed to connect the textphone to the telephone network. Overall, conversations held on text telephones with a direct connection were more successful and produced fewer garbled messages than those made with an acoustic connection. Although individual preferences were expressed, other defining features such as the size of keyboard, display type and size of text did not have a comparable impact on communication. Future research and development could focus on the design of products that would cater simultaneously for the communication needs of hearing, deaf and speech-impaired users.

Education for people with progressive neurological conditions can have negative effects: evidence from a randomized controlled trial.

OBJECTIVES: To test the effects of a home-based educational intervention in reducing the incidence and the risk of falls and pressure sores in adults with progressive neurological conditions. DESIGN: Randomized controlled trial with 12 months follow-up. SETTING: Participants' homes in the City of Nottingham. PARTICIPANTS: One hundred and fourteen people with progressive neurological conditions recruited from general practices in Nottingham, including 53 with Parkinson's disease and 45 with multiple sclerosis. INTERVENTIONS: In the education group (EG), baseline data were reviewed by an expert panel which advised on actions most likely to promote each individual's physical, social and psychological well-being. An occupational therapist (OT) then visited EG participants to provide education and information and to discuss a personalized 12-month health action plan. The comparison group (CoG) received standardized printed information delivered to their home. MAIN MEASURES: Numbers of participants reporting falls and skin sores at two-monthly phone calls during the follow-up period of 12 months. RESULTS: The EG reported significantly more falls during the follow-up period and at 12 months (adjusted odds ratio 2.83 (95% CI 1.07-7.47), p=0.036) and significantly more skin sores (adjusted odds ratio 12.74 (95% CI 1.14-142.6), p =0.039) than the CoG. There was no difference between CoG and EG in the Nottingham Extended Activities of Daily Living score, but EG patients showed a significant rise in this score over the study period of 1.62 (95% CI 0.69-2.55, p=0.002). CONCLUSIONS: Our findings provide evidence that education for people with progressive neurological conditions can have negative effects.

On autonomy and participation in rehabilitation.

PURPOSE: To explore the concept of autonomy as a basis for social participation, with particular reference to rehabilitation. METHOD: A study of relevant literature from the field of rehabilitation, building on theory developed in other fields (ethics, social sciences), and deriving important concepts and strategies for rehabilitation practice. RESULTS: The focus of rehabilitation for people with a chronic disabling condition is shifting from a biomedical to a client-centred perspective. Conceptions of autonomy vary among individuals and cultures, but a crucial distinction can be made between decisional autonomy (the ability to make decisions without external restraint) and executional autonomy (the ability to act as one wishes). The liberal-individualist account of autonomy over-emphasizes physical independence and does not sufficiently recognize the inter-dependency of all people, including those with disabilities. An ethic of care, complementary to the principle of respect for autonomy, should guide the development of rehabilitation strategies to enhance individual autonomy and participation in daily living. For rehabilitation, this entails an attentive attitude, maximizing opportunities for informed choices, taking full account of each person's preferences, needs and social contexts. CONCLUSIONS: Autonomy is central to client-centred rehabilitation since it is a pre-requisite for effective participation. It is suggested that autonomy, conceived as a basis for participation, is the ultimate aim of rehabilitation.

Predicting fallers in a community-based sample of people with Parkinson's disease.

BACKGROUND: The risk of people with Parkinson's disease (PD) falling is greater than that of the general population but to date, disease-specific predictors of falling have not been identified. OBJECTIVES: To identify one or more features, which would predict individuals at risk of falling during a 3-month prospective follow-up study. METHOD: A battery of standardised tests administered in the home and the laboratory with a 3-month follow-up telephone interview. RESULTS: Sixty-three people with PD were recruited from GP practices. Eleven interview variables and six gait laboratory variables were used with subsamples (55 and 44 subjects, respectively) to fit predictive models for identifying future fallers. The number of falls in the previous year was the most important variable, without exception, to be selected as a predictor in various logistic regression models. A history of two or more falls had a sensitivity of 86.4% (95% CI 67.3-96.2%) and a specificity of 85.7% (95% CI 71.2-94.2%) in predicting falling in the next 3 months. CONCLUSION: Healthcare workers should be asking their patients with PD regularly and carefully about falling, and should consider instigating programmes of fall management for patients with PD who have fallen two or more times in the previous 12 months.

A community-dwelling sample of people with Parkinson's disease: characteristics of fallers and non-fallers.

BACKGROUND: people with Parkinson's disease often fall. OBJECTIVES: to report the frequency of falls and characteristics of fallers and non-fallers in a community-based sample of people with Parkinson's disease. METHOD: we administered a battery of standardized tests in the home and the laboratory. RESULTS: we recruited 63 people with Parkinson's disease through general practices. Forty (64%, 95% confidence interval 51-74%) had fallen in the previous 12 months. Many factors associated with falling in the general population were associated with Parkinson's disease fallers (e.g. use of multiple medication and greater physical disability). Fallers were more likely to be depressed and anxious than non-fallers. Condition-specific factors associated with falling included greater disease severity (although there were exceptions) and more marked response to levodopa treatment, including more dyskinesia and on-off phenomena. Fallers took more steps to complete a test of mobility. They also had a shorter functional reach and greater postural sway whilst completing a dual task than non-fallers. CONCLUSION: this community-based study confirms the high risk of falling in Parkinson's disease. Our results suggest that disease-specific factors contribute to the increased risk and that there is scope for specific therapeutic interventions.

Goal-setting in rehabilitation: report of a workshop to explore professionals' perceptions of goal-setting.

OBJECTIVE: To explore the views of therapists, nurses and doctors working in a variety of rehabilitation settings on the goal-setting process. METHODS: Sixteen rehabilitation staff from three different settings attended a goal-setting workshop in which the difficulties associated with goal-setting were described with their potential solutions. RESULTS: Five difficulties with goal-setting were identified. (1) Formal goal-setting was felt to be an activity unusual for many of the patients although intrinsic to the activity of many professional groups. (2) Goal-setting is often insensitive to people's roles in the community. (3) Goal-setting in the hospital environment does not transfer easily to the community. (4) External factors (e.g. staff turnover) over which staff felt they had little control were important in the success of a goal-setting programme. (5) Goals tend to be formulated and owned by the team, rather than the patient. CONCLUSIONS: Goal-setting is a very satisfactory activity for the team but to be as successful for the patient their needs must be acknowledged. People with mild disability and a short inpatient stay have different needs to those with acute onset severe permanent disability and those with chronic or progressive disability admitted from the community. Comparison of both process and outcome effects of different types of goal-setting is an area for future study.

A randomized, double-blind, placebo-controlled, dose-ranging study to compare the efficacy and safety of three doses of botulinum toxin type A (Dysport) with placebo in upper limb spasticity after stroke.

BACKGROUND AND PURPOSE: We sought to define an effective and safe dose of botulinum toxin type A (Dysport) for the treatment of upper limb muscle spasticity due to stroke. METHODS: This was a prospective, randomized, double-blind, placebo-controlled, dose-ranging study. Patients received either a placebo or 1 of 3 doses of Dysport (500, 1000, 1500 U) into 5 muscles of the affected arm. Efficacy was assessed periodically by the Modified Ashworth Scale and a battery of functional outcome measures. RESULTS: Eighty-three patients were recruited, and 82 completed the study. The 4 study groups were comparable at baseline with respect to their demographic characteristics and severity of spasticity. All doses of Dysport studied showed a significant reduction from baseline of muscle tone compared with placebo. However, the effect on functional disability was not statistically significant and was best at a dose of 1000 U. There were no statistically significant differences between the groups in the incidence of adverse events. CONCLUSIONS: The present study suggests that treatment with Dysport reduces muscle tone in patients with poststroke upper limb spasticity. Treatment was effective at doses of Dysport of 500, 1000, and 1500 U. The optimal dose for treatment of patients with residual voluntary movements in the upper limb appears to be 1000 U. Dysport is safe in the doses used in this study.

A lack of evidence in 4-month-old human infants for paternal voice preference.

Several studies have found that human infants recognize the sight, sound, smell, and touch of their mothers. Maternal recognition occurs early in development, often being influenced by prenatal experiences. In contrast, the development of infants' recognition of their fathers is not understood. We investigated whether 4-month-old human infants preferred their fathers' voices, in two different speaking contexts. In both Experiments 1 and 2, infants were tested with fathers' adult-directed (AD) or infant-directed (ID) speech. In all experiments, infants were allowed to listen to recordings of either father's or other's voice contingent on their visual attention. Results from the first two experiments showed that infants did not prefer their fathers' voices over unfamiliar male voices. However, in Experiment 3, 4-month-olds showed that they could discriminate the male voices heard in the previous studies. These data were interpreted as supporting the hypothesis that the experiences necessary for the development of maternal preferences are different from those supporting paternal preferences, and that perhaps multimodal cues are necessary for father recognition in infancy.

Neurological rehabilitation in Indonesia and the UK: differences and similarities.

Both countries face considerable challenges to their rehabilitation services. Although contextually different, the problems and challenges are common to both. Two contrasting views of disability have been presented. In the UK disability may be viewed as a disaster, while in Asia illness and disability may be viewed as inevitable. Personal independence is not a universal goal of rehabilitation, because in some cultures dependence on others is an expected consequence of disability. Disability in Indonesia translates into a large burden of care for the family, whereas English families may expect greater help from the government in caring for their relative. Western rehabilitation is increasingly patient directed, whereas the Indonesian model is more likely to be determined solely by professionals. The problems observed by the team in Indonesia were remarkably similar to those experienced in the UK. A patient centered goal setting approach can be considered vital to neurological rehabilitation, although the focus of the goals set is likely to be very different in these two cultures. The fundamental importance of a multidisciplinary team is recognized in both cultures, although team working may not be easy in either situation. Managerial commitment is essential for the survival of a team, yet both structures sometimes fail to provide the necessary support. Hierarchical leadership can inhibit team development both in the UK and in Indonesia, as can frequent rotation of staff. Prescription of therapy by doctors inhibits the development of therapists in both cultures, and therefore the overall effectiveness of the team. In both the UK and Indonesia, the value of rehabilitation as a specialty is not widely recognized. The absence of life and death situations means that services are often out of the public eye, and poorly understood. However, the prevalence of disability will increase the need for rehabilitation services worldwide. Many challenges remain in both the UK and Indonesia to the development of more effective rehabilitation services. Issues like the lack of recognition of rehabilitation as a specialty, the importance of team work, the paucity of managerial support, and increasing demand for rehabilitation services will need to be recognized and addressed. Despite the different approaches to disability in the two cultures, the problems faced are similar. These problems will need to be solved if there is to be significant progress in this multidisciplinary field.

Recovery of infectious SV5 from cloned DNA and expression of a foreign gene.

A complete cDNA clone of the genome (15,246 nucleotides) of the paramyxovirus SV5 was constructed from cDNAs such that an anti-genome RNA could be transcribed by T7 RNA polymerase and the correct 3' end generated by cleavage using hepatitis delta virus ribozyme. The plasmid encoding the antigenome sequence was transfected into cells previously infected with recombinant vaccinia virus that expressed T7 RNA polymerase, together with helper plasmids that expressed the viral replication proteins, NP, P, and L, under the control of the T7 polymerase promoter. Rescue of the RNA genome from DNA was demonstrated by recovering SV5 with the tag restriction sites introduced into the DNA clone, using RT-PCR of the genome RNA and nucleotide sequencing. Rescue of SV5 from DNA did not require expression of the viral V protein as a helper plasmid, suggesting that V protein is not essential for initial replication. The infectious cDNA of SV5 was also manipulated to express green fluorescent protein (GFP) under the control of SV5 transcriptional start and stop signals introduced between the HN and L genes. The amount of GFP that was expressed varied depending on the nature of the newly introduced transcription signals.

Mutants of the paramyxovirus SV5 fusion protein: regulated and extensive syncytium formation.

To study paramyxovirus-mediated cell fusion it would be advantageous to express in a cell a single protein that could cause regulated syncytium formation at neutral pH following a specific activation signal. We have constructed two SV5 fusion (F) protein mutants that contain three arginine residues in the cleavage site and two separate glycine to alanine changes in the fusion peptide. The mutants were expressed in CV-1 cells using an SV40 recombinant virus vector. The mutant F proteins required addition of exogenous trypsin to cleave F0 to F1 and F2. Massive syncytium formation occurred within 2-4 hr following addition of trypsin to the SV40 recombinant F virus-infected CV-1 cells.

Does selegiline delay progression of Parkinson's disease? A critical re-evaluation of the DATATOP study.

The deprenyl and tocopherol antioxidative treatment (DATATOP) study has shown that selegiline (deprenyl), with or without tocopherol, reduces physical and psychological deficits in patients with Parkinson's disease within one month of treatment and reduces the probability of reaching a primary endpoint, the decision to treat with levodopa. This paper critically re-evaluates the inference that selegiline has a neuroprotective effect and thus delays progression of Parkinson's disease. Analysis is based on a simple model which assumes that clinically measured impairment is proportional to degree of cellular dysfunction in Parkinson's disease. The analysis suggests that the reduced probability of reaching an endpoint was due to a direct treatment effect rather than to neuroprotection.

Determination of the poliovirus RNA polymerase error frequency at eight sites in the viral genome.

The poliovirus RNA polymerase error frequency was measured in vivo at eight sites in the poliovirus genome. The frequency at which specific G residues in poliovirion RNA changed to another base during one round of viral RNA replication was determined. Poliovirion RNA uniformly labeled with 32Pi was hybridized to a synthetic DNA oligonucleotide that was complementary to a sequence in the viral genome that contained a single internal G residue. The nonhybridized viral RNA was digested with RNase T1, and the protected RNA oligonucleotide was purified by gel electrophoresis. The base substitution frequency at the internal G residue was measured by finding the fraction of this RNA oligonucleotide that was resistant to RNase T1 digestion. A mean value of 2.0 x 10(-3) +/- 1.2 x 10(-3) was obtained at two sites. A modification of the above procedure involved the use of 5'-end-labeled RNA oligonucleotides. The mean value of the error frequency determined at eight sites in the viral genome by using this technique was 4.1 x 10(-3) +/- 0.6 x 10(-3). Sequencing two of the RNase T1-resistant RNA oligonucleotides confirmed that the internal G was changed to a C, A, or U residue in most of these oligonucleotides. Thus, our results indicated that the polymerase had a high error frequency in vivo and that there was no significant variation in the values determined at the specific sites examined in this study.