Reflect before you act: providing structure to the evaluation of rehabilitation programmes

Purpose: This paper is concerned with understanding and evaluating potentially diverse rehabilitation programmes. It helps evaluators and programme managers to focus attention on specific aspects of the rehabilitation process and select evaluation questions relevant to each.

Method: Distinction is made between the rehabilitation programme itself, the programme environment and the relationships between the two. For each of these areas, evaluation questions have been formulated. For services offered to individual clients, questions address whether the status of clients has improved, what interventions are offered and who benefit from them, the relationships between the service providers and the clients, and who may be involved in the rehabilitation process besides the client. To assess the programme environment, questions address the epidemiology of disability, the resources available to persons with disabilities, the inclusiveness of education and employment and a number of eco-social variables. Relationships between the programme and its environment concern the support of the community for the programme, the way the programme seeks to influence the community, the referral of clients to other services available in the community and the extent to which the programme is a learning organization.

Results: Lists of evaluation questions are presented from which the evaluator can select those most relevant to the programme to be evaluated. This provides a framework for the evaluation and for the information to be gathered. Rather than providing a blue print, this framework permits flexibility to adapt to the specific situation of the programme to be evaluated.

Conclusion: This paper presents a useful guideline that stimulates the thinking of those preparing for the evaluation of rehabilitation programmes.     

Measuring fatigue in people with multiple sclerosis

Objective: To compare methods of assessing fatigue.

Design: Cross sectional.

Setting: Community.

Subjects: Forty Multile Sclerosis (MS) patients and 20 healthy controls.

Main outcome measures: Fatigue questionnaires, SDSA dot cancellation test, finger tapping test, TEA Lottery.

Results: The MS patients had significantly higher levels of fatigue than the controls on the Task Induced Fatigue Scale, Fatigue Severity Scale and Fatigue Impact Scale. The Task Induced Fatigue Scale completed whilst imagining oneself driving and the Fatigue Assessment Instrument did not differentiate between MS patients and controls. Finger tapping differentiated between MS patients and controls but there was no significant difference between MS patients and controls on visual and auditory concentration tests. A factor analysis indicated that questionnaire measures of fatigue were inter-related but independent of objective test performance.

Conclusions: Questionnaire measures can be used to assess fatigue in people with MS. The FSS differentiated MS patients from controls and is relatively short. It was therefore recommended for clinical use.     

The efficacy of a work-station intervention programme to improve functional ability and flexibility in ageing clients with Cerebral Palsy: a pilot study

Purpose: Health care workers associated with the long-term care of ageing clients with Cerebral Palsy have reported on the adverse effects of less active daily activity programmes with resultant decreased functional mobility. While the negative effects of ageing have been reported in these clients, programmes have not been implemented to determine whether these adverse changes can be reversed or prevented. The efficacy of a work-station intervention programme to improve functional ability and flexibility in ageing clients with cerebral palsy was investigated.

Method: A clinical intervention study using repeated measures (pre/post-intervention and at follow-up) to evaluate efficacy was undertaken. Twenty-two clients with Cerebral Palsy participated in a twice-weekly work-station programme delivered over 8 weeks. The Physical Mobility Scale items, two upper limb function measures, range limitation of hip and knee extension and gleno-humeral movement were assessed.

Results: Results showed a significant improvement that was retained at follow-up in functional but not flexibility measures.

Conclusion: The efficacy of a work-station exercise programme for ageing clients with Cerebral Palsy was demonstrated. Evidence was provided that the PMS is effective in showing level of dependency for these clients.     

Functional outcome in patients with critical illness polyneuropathy

Purpose: To evaluate the functional outcome of intensive care patients with critical illness polyneuropathy (CIP), 6 and 12 months after the onset.

Methods: Design: A prospective observational cohort study and a cross-sectional study.

Setting: University hospital in the Netherlands.

Patients: Eight consecutive intensive care patients with CIP for the prospective study and eight patients diagnosed with CIP in the past 6 months for the cross-sectional study.

Main outcome measures: Functional outcome regarding body functions and structure, activities, participation and perceived quality of life.

Results: Nine patients (56%) died within one year. Functional outcome, participation and subjective health status in survivors varied widely at 6 and 12 months. After 12 months, physical functioning was improved in all patients. However activities related to mobility outdoors, autonomy, participation and quality of life were restricted in most patients.

Conclusions: The majority of survivors have persistent functional disabilities in activities, reduced quality of life and restrictions in autonomy and participation one year after the onset of CIP. Prolonged rehabilitation treatment is necessary for an increasing number of intensive care patients who develop CIP, in order to reduce handicaps and achieve optimal autonomy and social participation.     

Barriers to accessing safe motherhood and reproductive health services: the situation of women with disabilities in Lusaka, Zambia

Purpose: To ascertain how well health services in Lusaka, Zambia currently meet the safe motherhood and reproductive health care needs of women who have physical impairment leading to disability.

Methods: A qualitative study was conducted in Lusaka, Zambia. In-depth tape-recorded interviews were conducted with 24 purposively selected women with disabilities and with 25 safe motherhood/reproductive public sector health service providers. Qualitative analysis was conducted using NVivo software.

Results: Women with disabilities encounter various social, attitudinal and physical barriers to accessing safe motherhood and reproductive health (RH) services in this particular setting. The strong desire for children and affection can increase vulnerability to sexual exploitation. At the same time, a generalized assumption among reproductive health service providers that women with disabilities will not be sexually active, and not require RH services, leads to increased vulnerability to sexually transmitted infection including HIV. Once pregnant, traditional beliefs about transmission of disabilities can create barriers to integration in ante-natal clinics. Nurse-midwives' fear of delivery complications in women with physical impairments can also result in routine over-referral to a tertiary maternity facility which is outside the locality and harder for women with mobility limitations to get to.

Conclusion: Greater understanding of the influences underpinning societal attitudes towards sexuality and disability in this setting, and more extensive communication between health care staff and women with disabilities would facilitate positive action towards improving safe motherhood and reproductive health services for women with disabilities.     

Long-term outcome of equestrian injuries in children

Purpose: To investigate the possible development of long-term disabilities arising from paediatric equestrian injuries.

Method: All patients, aged 17 years or younger, treated in a hospital setting because of an equestrian injury during a five-year period received a questionnaire. A reference population and healthy friends served as controls.

Results: Four years post-injury, 41 of the 100 respondents still experienced disabilities following the injury. The median Injury Severity Score was 4. Absenteeism from school lasted 2 weeks, and from horse riding, 4 months. Compared to the reference population, the results of the Child Health Questionnaire were poorer considering most of its subscales. In comparison with the friends, the patients only scored lower on 'physical functioning'. The risk factors concerning poor long-term outcomes were being an advanced rider, sustaining injuries other than fractures of the extremities or sustaining subsequent injuries following the riding accident.

Conclusions: Although equestrian injuries in children are minor to moderate in their severity, these injuries are significant considering that a large proportion of patients experience long-term disabilities.     

Psychological factors after traumatic amputation in landmine survivors: The bridge between physical healing and full recovery

Purpose: Limb loss due to a landmine injury is sudden and devastating. The resulting disability makes life challenging in a world where physical ability is the 'norm'. In order to better understand the psychological adjustments individuals make in their recovery from a landmine injury, the Landmine Survivors Network conducted an exploratory qualitative study to determine factors that contribute to an individual's recovery. The study examined psychosocial aspects, coping strategies, and resilience characteristics of limb loss survivors across differing cultural, societal and economic backgrounds.

Method: Eighty-five participants (68 persons of limb loss, 10 family members, seven service providers) were interviewed using a semi-structured protocol in the USA and an open-ended format in six landmine affected countries. Data analysis was completed using grounded theory analytic strategies.

Results: Data indicated that the survivors' acceptance of limb loss and their state of psychological recovery were greatly influenced by the individual's resilience characteristics, social support, medical care, economic situation and societal attitudes toward people with disabilities.

Conclusion: Recovery from traumatic amputation in landmine survivors needs to be comprehensive and coordinated, and requires addressing the individual's physical, psychological, economic and social needs within the context of family, community, and the socio-cultural environment in which they live.     

Is social participation associated with quality of life of older adults with physical disabilities?

Purpose: To explore the relationships between subjective quality of life and social participation of older adults with physical disabilities.

Method: A cross-sectional design was used with a convenience sample of 46 people aged 60 to 90 living in the community. Subjective quality of life was estimated with the Quality of Life Index and social participation with the Assessment of Life Habits.

Results: Only a weak relationship was found between total scores of quality of life and social participation. Interpersonal relationships, responsibilities, fitness and recreation were the categories of social participation most associated with quality of life. Social roles were more associated with quality of life than daily activities. Finally, satisfaction with the accomplishment of life habits was also more associated with quality of life than the performance itself.

Conclusions: The importance of social participation in regard to the quality of life of older persons with physical disabilities living in the community is partially supported by these findings. Other studies are needed to clarify how social participation influences quality of life in this population.     

A comparison of consumer-directed and agency-directed personal assistance services programmes

Purpose: To compare a consumer-directed personal assistance services (PAS) programme with an agency-directed PAS programme.

Method: A convenience sample was used for this cross-sectional study with one data collection point. Outcomes were compared for consumer-directed and agency-directed PAS. Hierarchical regressions were also used to determine the predictors of outcomes across PAS programmes. In-home interviews were conducted by a trained data collector from April 2000 to December 2001.

Results: Participants in the consumer-directed programme reported more choices over PAS and satisfaction with PAS. Self-reported outcomes were primarily predicted by the following variables: service arrangement, type of provider, importance of directing PAS, health status, number of personal assistants used in past 12 months, sufficient PAS hours received, and social support.

Conclusions: Consumer-directed PAS enhances outcomes for many persons with disabilities. Self-reported outcomes are affected by many factors that could be addressed in PAS programme development.     

Impairments, disabilities and health related quality of life after treatment for breast cancer: a follow-up study 2.7 years after surgery

Purpose: The aim of this study was to assess impairments, disabilities and health related Quality of Life (QOL) after treatment of breast cancer and to analyse the relationship between treatment modalities, impairments, disabilities and health related QOL.

Method: Fifty-five patients who underwent a modified radical mastectomy or a segmental mastectomy with axillary lymph node dissection were retrospectively assessed with a mean follow up of 2.7 years after treatment. Impairments were assessed by means of measuring active shoulder range of motion, grip strength, arm volume and pain. Disabilities were assessed by means of the Shoulder Disability Questionnaire (SDQ) and health related QOL was assessed by means of the RAND 36-item Health Survey (RAND-36).

Setting: University Hospital Groningen (The Netherlands).

Results: Pain (60%) and reduction of grip-strength (40%) were the most frequent impairments found. The prevalence of impaired range of motion and oedema was 9 - 16% respectively 15%. Mean group score of the SDQ was 33.7 (sd: 32.1) and mean scores of the RAND-36 differed significantly for physical functioning, vitality and health perception to that of a female norm group. Radiotherapy and chemotherapy were significant factors in the prediction of impaired range of motion. Pain and restricted range of motion explained 61% respectively 12% of the variance in disability (SDQ). In the prediction of health related QOL, pain, grip strength and arm volume were significant factors respectively in six, three and two domains.

Conclusions: Pain is the most frequent assessed impairment after breast cancer treatment with strong relationship to perceived disability and health related QOL. Disability is mild and health related QOL (RAND-36) differed in three of the nine domains with a female norm group.     

Improving spatial functioning in children with cerebral palsy using computerized and traditional game tasks

Purpose: To examine the effectiveness of combining virtual environment (VE) instruction with additional desk-top tasks, based on the Luria-Vygotsky methodology, for spatial remediation in children having complex motor disabilities restricting movement.

Method: In Experiment 1, from among children attending for residential rehabilitation, an experimental subgroup had additional spatial training using a VE and corresponding desk-top models. All children were tested at the start and end of training, using four spatial tests. In Experiment 2, larger groups of children (pair-matched for initial performance) were given the same training as in Experiment 1, but experimentals received both VE-based training and supporting tasks designed to improve executive functions and verbal regulation of spatial functioning. Assessment involved a wider range of tests than in Experiment 1.

Results: In Experiment 1, both groups showed improvement at retest, but experimentals showed greater improvement. Children beginning with the lowest level of cognitive performance failed to benefit from the additional training. In Experiment 2 the experimental group made significantly greater improvement than controls, irrespective of initial performance level.

Conclusions: VE-based spatial training is effective for children with complex disabilities, particularly when combined with training that remediates cognitive weaknesses.     

External validation of a housing recommendation model for clients following stroke rehabilitation

Purpose: Using a Social Judgment Theory approach, mathematical models of clinical decisions can be developed to predict new decisions. However, since these models are often developed under 'laboratory conditions' using hypothetical cases rather than real world client samples, questions may be raised concerning the external validity of such models. The purpose of this research was to validate a discharge housing decision making model developed with hypothetical clients with stroke with a real sample. This process is referred to as external validation.

Method: Cross-tabulations were performed to compare the model discharge housing prediction against the team's actual recommendations for 60 clients from three rehabilitation centres. A sensitivity and specificity analysis was used to compare the model predictions against the client's actual discharge housing.

Results: A simple mathematical model was constructed to accurately predict housing recommendations. However, the predictive power of the model appeared to be limited by clinician/team consideration of unmeasured factors such as client personality and motivation.

Conclusion: It is suggested that the housing decision model developed may be useful for rehabilitation teams as a starting point when discussing the best place to recommend a client reside on discharge from rehabilitation. Such a model may assist teams to standardise their decision processes and minimise the potential for unwarranted bias.     

Microswitch clusters to support responding and appropriate posture of students with multiple disabilities: three case evaluations

Purpose: This study extended the evaluation of microswitch clusters to support responding and appropriate posture with three students with multiple disabilities.

Method: Initially, a baseline level was established for the target response selected for each student. Then, Intervention I was implemented to increase the frequency of that response through the presentation of favourite stimuli. During Intervention II, the response was followed by favourite stimuli only if the microswitch cluster detected it in combination with appropriate posture. Post-intervention checks were carried out within 2 or 3 months from the end of Intervention II.

Results and conclusions: All students showed an increase in the frequency of the target response during Intervention I and in the percentage of times the response occurred in combination with appropriate posture during Intervention II. These changes lasted over time. The importance of microswitch clusters to enhance the performance of students with multiple disabilities was underlined.     

Long-term evaluation of a health education programme for elderly persons with visual impairment. A randomized study

In order to implement evidence-based practice, a randomized study was set up to evaluate the ADL- based Health Education Programme 'Discovering new ways' for elderly persons with age-related macular degeneration.

Purpose: To investigate the impact of this program on perceived security in the performance of daily activities 28 months after the intervention.

Method: Two-hundred and twenty-nine persons randomized to either the Health Education programme or an Individual Intervention Programme participated in the study. At the 28-month follow-up there was a dropout of 98 persons and the results are based on 62 persons participating in the Health Education Programme and 69 persons in the Individual Intervention Programme.

Results: There were statistically significant differences in perceived security between the groups in 15 out of 28 daily activities. Furthermore, the Health Education Group showed a significant tendency towards an improved level of security while the Individual Intervention Group tended to deteriorate.

Conclusions: The findings provide strong support for the long-term effect of the programme and for the implementation of evidence-based practice. The study corroborates the effectiveness of the Health Education Programme in enhancing security and hindering a progressive decline in perceived security in daily activities.     

Leisure-time physical activity and secondary conditions in women with physical disabilities

Purpose: To examine the relationship between secondary conditions and leisure-time physical activity participation (LTPA) in women with physical disabilities.

Method: A survey was conducted in a metropolitan urban USA area of women (n = 170) with physical disabilities including MS, CP, polio, arthritis, TBI, and CVA among others and aged 21 - 65 years. Outcome measures were LTPA, secondary conditions (numbers and severity), and functional status.

Results: Respondents experienced 11.99 ( ± 6.05) secondary conditions in the past year, self-rated their severity as 'moderate problems', and reported moderate levels of functional impairment. LTPA participation (excluding calisthenics/exercise) was reported to be 2.90 ( ± 5.12) times/week with 39.4% reporting no participation. After controlling for the interaction between severity of secondary conditions and functional status, the secondary conditions of physical deconditioning and isolation were significantly and inversely related to LTPA participation (r = - 0.164, p = 0.036; r = - 0.156, p = 0.045, respectively).

Conclusion: Reported secondary conditions of physical deconditioning and isolation are inversely related to the ability of moderately impaired women with physical disabilities to participate in LTPA when functional status was controlled and should be considered in efforts to increase involvement in this health promoting behaviour.     

Investigation of health perspectives of those with physical disabilities: the role of spirituality as a determinant of health

Purpose: To identify key determinants of health and the process of health attainment for people with musculoskeletal disabilities.

Method: Focus groups of people with musculoskeletal disorders, including 30 members and their five trained facilitators, provided data. Discussed were 'What is health for you?' and 'What has helped, or would help you achieve this health?' Delphi-structured analysis identified health themes and a health process model was developed with the facilitators comprising the expert panel.

Results: Health was perceived as centred on relationships that required a spiritual awareness for a strong and resilient identity. The Self Attributes Model developed portrays the processes perceived to be required for health.

Conclusions: Although physical, social and psychological interventions are essential aspects of health intervention, by themselves they are not sufficient. Also required for health is a strong resilient self resulting from interaction and connection with other people and the natural world. Moreover, development of such an identity requires a spiritual world-view comprising an acknowledgement of the essence of self and focus upon the nature of the connection of this essence with all other aspects of life. Further research is required to advance understanding of the process by which this occurs for people with chronic disorders.     

The illusive phantom: Does primary care meet patient need following limb loss?

Purpose: Anecdotal evidence suggests that General Practitioners (GPs) vary in their understanding of phantom pain and associated factors in amputees. This has implications in that the GP's conception of the problem will determine what treatment or referral is offered.

Method: The present study aimed to explore GP's knowledge and understanding of phantom limb pain using a postal questionnaire. A sample of 129 GPs responded resulting in a response rate of 38%.

Results: The results suggest that GPs underestimate the prevalence, intensity and duration of phantom and residual limb pain. Moreover, inconsistencies in the reasons given for referral to specialist services for the management of phantom pain were reported.

Conclusion: These findings have serious implications for the management of phantom limb pain, disability and psychological distress in amputees in that GPs not only provide first line treatment, but are also the gatekeepers for referral to other services. Given this, the role of other professionals within the primary health care team may prove an additional resource for providing both support and accurate information to amputees in the community.     

Long-term outcomes after moderate to severe traumatic brain injury

Objective: This research examined the long-term outcomes of rehabilitation patients with moderate to severe traumatic brain injury (TBI).

Design: Retrospective cohort study.

Setting and subjects: We examined consecutive records of persons with moderate to severe traumatic brain injury who were discharged from a large rehabilitation hospital in Pennsylvania from 1973 to 1989. We interviewed consenting participants (n = 306) up to 24 years post-injury.

Main outcome measures: Self-rated health, activity limitations, employment, living arrangements, marital status, Community Integration Questionnaire, and use of rehabilitation services.

Results: Participants were most limited in activities such as managing money and shopping. Twenty-nine per cent of our participants were working full time. There were significant relationships between activity limitations and residual cognitive impairment at follow-up. Self-rated health was correlated with most instrumental activities of daily living.

Conclusion: Our findings document health and function in a large post acute TBI population and implications for rehabilitation are discussed.     

A comparison of the grip force distribution in natural hands and in prosthetic hands

Purpose: The aim of this study is to analyse the grip force distribution for different prosthetic hand designs and the human hand fulfilling a functional task.

Method: A cylindrical object is held with a power grasp and the contact forces are measured at 20 defined positions. The distributions of contact forces in standard electric prostheses, in a experimental prosthesis with an adaptive grasp, and in human hands as a reference are analysed and compared. Additionally, the joint torques are calculated and compared.

Results: Contact forces of up to 24.7 N are applied by the middle and distal phalanges of the index finger, middle finger, and thumb of standard prosthetic hands, whereas forces of up to 3.8 N are measured for human hands. The maximum contact forces measured in a prosthetic hand with an adaptive grasp are 4.7 N. The joint torques of human hands and the adaptive prosthesis are comparable.

Conclusions: The analysis of grip force distribution is proposed as an additional parameter to rate the performance of different prosthetic hand designs.