M. Anne Chamberlain

Adult outcomes and lifespan issues for people with childhood‐onset physical disability

This paper aimed to discuss functioning, quality of life, (QoL) and lifespan care issues of adolescents and young adults with childhood‐onset physical disability from a clinical, scientific, and personal perspective. We present a résumé of results of recently performed studies in rehabilitation‐based samples of (young) adults with childhood‐onset conditions such as cerebral palsy (CP) and spina bifida (SB), and different models of transition and lifespan care. The studies showed that many young adults with a childhood‐onset disability experience health‐related problems such as functional deterioration, pain or fatigue, and an inactive lifestyle. A significant number are restricted in participation in work, housing, and intimate relationships. They perceive a lower health‐related and global QoL compared with a reference group. In some centres in the UK and the Netherlands specialized outpatient services are available or being developed. In conclusion, transition to adulthood is a critical phase for reaching autonomous participation in adult life. There is an international challenge to incorporate a lifespan perspective in paediatric, transition, and adult health care services for persons with a childhood‐onset disability.

Mood disorders following traumatic brain injury: identifying the extent of the problem and the people at risk

The extent of mood disorders following traumatic brain injury (TBI), and the possible risk factors, are investigated. New data are presented from a prospective study of consecutive hospital admissions. Six months post-TBI, 99 adults completed a standardized assessment of emotional state, the Wimbledon Self-Report Scale. Cognitive performance and the impact of the injury on everyday functioning were also assessed. The rate of clinically significant mood disorders (caseness) was 38%. Of the demographic or injury characteristics, only pre-injury occupational status predicted post-injury caseness. Those unoccupied pre-injury were more likely to report mood disturbance post-injury. In contrast, post-injury occupational status was not related to caseness either for the whole group or the subgroup of those previously occupied, despite the adverse effects on occupational functioning for a significant proportion of subjects. Associations were found between emotional state and cognitive and everyday functioning 6 months post-injury. Psychosocial disabilities appeared more strongly associated to mood disorders than did physical disabilities. A significant level of unmet need has been highlighted, and possible risk factors identified, which may inform the purchase and provision of TBI rehabilitation services. Follow-up data on these subjects are available and will be reported separately.

A randomised controlled trial to determine the effect of intensity of therapy upon length of stay in a neurological rehabilitation setting.

A randomised single-blind controlled trial was designed to determine whether intensity of therapy (physiotherapy and occupational therapy) shortened length of stay for patients in a rehabilitation unit. Patients were under 65, primarily with stroke, but also with other conditions such as traumatic brain injury, and multiple sclerosis. The experimental group were timetabled to receive 67% more therapy in any given week, than the control group. After controlling for confounders and case mix (as expressed by type of therapy required) patients in the experimental group showed a significant 14-day reduction in length of stay (<0.01). Concurrently average length of stay was increased for both groups by 16 days due to delays in discharge.

Home-based rehabilitation for people with stroke: a comparative study of six community services providing co-ordinated, multidisciplinary treatment

Objective: To describe and compare six community services providing co-ordinated, multidisciplinary rehabilitation to people with stroke. Design: Prospective, descriptive, quantitative study. Setting: England and Northern Ireland. Subjects: Community rehabilitation teams and the patients treated by them. Main outcome measures: Annual numbers treated, Barthel Index, mortality, place of discharge, crude costs. Results: Between mid-1997 and mid-1999, data were collected on 1076 patients who received community-based rehabilitation of whom 48.7% were male. Mean age (SD) was 71 years (13.1); 115 (10.7%) were under 55 years of age and 278 (25.9%) under 65 years of age. Median time between stroke and intervention by the community service was six weeks (25th, 75th percentiles 2.6, 14.4 weeks) and 80.5% had been admitted to hospital. The median Barthel score at the start of community rehabilitation was 15 (11.0, 18.0) and at the end was 18.0 (14.0, 20.0). Median duration of intervention was 12 weeks (6.0, 22.0). At the end of community rehabilitation 912 patients (86.5%) were in the community, 52 (4.9%) had died, 10 (0.9%) were in hospital and 77 (7.3%) in long-term care. Comparative data given here are for one year, 1998, when a total of 519 patients began community rehabilitation. Details of 1855 face-to-face interventions were also recorded from subsets of 10 consecutive patients. Conclusions: Community rehabilitation teams differed in their target populations, in the timing and duration of intervention. A taxonomy of four types of co-ordinated community-based rehabilitation for people with stroke is proposed: (1) Early-supported discharge rehabilitation aimed to reduce length of hospital stay and offered an alternative to hospital rehabilitation. (2) Post-discharge rehabilitation provided additional rehabilitation and aimed for a seamless transfer of patients from hospital to community. (3) General practitioner-oriented post-stroke rehabilitation provided an alternative to hospital admission and rehabilitation. (4) Late community rehabilitation provided patients with the opportunity of an autonomous service, unconnected with hospital or GP referral. Purchasers need to decide for what purpose a team is to be set up. Researchers need to be similarly aware of diversity in community rehabilitation before comparisons are made.

Quantifying associated reactions in the paretic arm in stroke and their relationship to spasticity

Objectives: (1) To present a measurement protocol for assessing associated reactions (AR) in the paretic arm and (2) to use it to investigate the pattern of AR and its association with spasticity. Setting: Inpatient rehabilitation unit. Design: Associated reactions in 49 adults with stroke were measured in terms of force generated, electrical muscle activity and wrist movement in the paretic arm using hand dynamometry, surface electromyography and electrogoniometry respectively. Simultaneous recording of the effort used to elicit the associated reaction was made using a second hand dynamometer. The magnitude and persistence of AR was compared with the clinical assessment of spasticity (using the modified Ashworth Scale, MAS). Results: There was poor correlation between peak AR and MAS, suggesting that AR are not confined to patients with severe spasticity. Co-activation of forearm flexors and extensors was evident during the AR. AR fluctuated during a single period of effort in some patients. Only 12 out of 31 patients who maintained uniform effort over the measurement period produced a uniform AR. AR often persisted for some time after effort had ceased. Eight were classified as minimal (median AR 0.23 N), 25 as mild (median AR 2.7 N), 11 as moderate (median AR 6.4 N) and 3 as severe (median AR 11.0 N). AR tended to persist in patients with higher MAS although this result was not statistically significant. Conclusion: The magnitude, profile and persistence of AR varied considerably between individuals. Associated reactions were present in people with minimal spasticity. As this technique allows the magnitude of AR to be quantified in relation to effort it has the potential to be a useful outcome measure in clinical trials evaluating the treatments (e.g. physiotherapy) directed at reducing associated reactions.

The Barthel Index: an ordinal score or interval level measure?

The Barthel Index is one of the most widely used activities of daily living (ADL) measures in stroke rehabilitation and there has been some debate recently about whether or not the Index is an ordinal score or an interval level measure. An audit of 192 consecutive patients undergoing inpatient rehabilitation following stroke has provided the opportunity to examine this question with recently developed mathematical techniques based on the work of George Rasch. Rasch models define the criteria which data must follow to produce an interval level measure. It thus becomes possible to test the data derived from the audit against the Rasch model. Calibration of the 10 items in the Index shows considerable differences in the degree of difficulty (weight), and these differences are not compensated for by the current scoring. Thus adding together the items produces a scale whose intervals vary considerably, particularly between intervals at the lower or upper ends of the scale, and those at the centre. This can give rise to considerable differences between the change score based on the Rasch transformation (taking into account item difficulty) and the change score based on raw scores. These findings confirm the ordinal nature of the Barthel Index. Further questions are raised about the unidimensionality of the Index, and the context in which it should be used.

The stroke patient in an urban environment

A cohort of 70 patients who had had a stroke a median of 19 months, for males, and 23 months, for females, beforehand and had been treated intensively in a rehabilitation unit, was compared with an age matched control group (25) of normal people living in the same city. Two thirds of patients were moderately or severely limited in their independence on the Barthel Scale; only4% had a normal level of social activities (Frenchay Index) and half were depressed (Wakefield Scale). Mobility was severely impaired, only 15% being able to walk more than 440 yards. Only one subject drove a car, few could use public transport, and only two people returned to work full time. Use of health services and social services was low. No control subjects had any such problems. Therefore, the social effects of stroke are severe; they persist for many years and they are not addressed by current inpatient treatment. New models of treatment must be devised and evaluated to reduce social isolation and depression in the patient and carer.

Evaluation of Aids and Equipment for Bathing: Survey II

A survey was carried out between 1974 and 1976 (Thomely, Chamberlain and Wright, 1977) at the Rheumatism and Rehabilitation Research Unit in Leeds, studying aids and equipment for bathing and toileting which had been prescribed and ordered when the patient had been assessed in an occupational therapy department. It revealed that two thirds of the aids were received weeks or months after the patient had returned home.

Socioeconomic effects of ankylosing spondylitis

Subjects with ankylosing spondylitis are frequently required to make many adjustments to their lifestyle. As these occur over many years, accommodation to the disease is usually accomplished adequately. However, it is important that the physician is aware of the functional problems, of which the patient will rarely complain, and should be able to advise and summon help, particularly with regard to employment and sexual activity. The problems of women with the illness need further exploration.

Sleep problems in stroke patients: relationship with shoulder pain

This study was designed to document the occurrence and the type of sleep problems in stroke patients and to examine the importance of shoulder pain in stroke in relation to sleep disturbances. Forty-six stroke patients were evaluated for the presence of sleep disturbances, general health problems (Nottingham Health Profile) and anxiety-depression (Hospital Anxiety Depression Scale) and compared with 47 age- and sex-matched subjects who had not had strokes. A four-item sleep questionnaire was used to assess different components of insomnia disorders through the previous month. The results showed that stroke patients had significantly more problems in initiating sleep than controls (p < 0.01). Other components of insomnia, difficulty in maintaining sleep or nonrestorative sleep did not differ between the two groups (p < 0.05). Factors found to be associated with poor sleep such as pain (p < 0.01), anxiety (p < 0.01) and depression (p < 0.01) were more common in the patient group but these did not otherwise result in a significant increase in all components of insomnia, probably because of the high level of benzodiazepine and tricyclic antidepressant intake amongst patients. Stroke patients with shoulder pain showed significantly more sleep disturbances (p < 0.01 ) and less general well-being (p < 0.05) than patients without shoulder pain. It is concluded that attention must be paid to shoulder pain and to ensuing sleep disturbances among stroke patients.