Test-retest reliability of three life balance measures in people with neuromuscular disease: the activity card sort-NL, the activity calculator, and the occupational balance questionnaire.

Purpose: Life balance is a new and important concept in occupational therapy. New measurements are needed to assess and evaluate life balance and interventions aimed to achieve this concept. This article describes the test-retest reliability of three life balance measures: the Activity Calculator (AC), Activity Card Sort (ACS-NL(18-64)) and Occupational Balance Questionnaire (OBQ11-NL).Method: Data collection took place among 50 participants with neuromuscular diseases: facioscapulohumeral dystrophy (FSHD, n = 25) or mitochondrial myopathy (MM, n = 25). The AC, the ACS-NL(18-64) and the OBQ11-NL were assessed twice with an interval of one week. Intraclass correlation coefficients (ICC-agreement) were applied to examine test-retest reliability.Results: The ICC of the AC-average total day score was .95 (95% CI .91-.97), whereas the ICC of the weights allocated to each activity was 0.80 (95% CI .77-0.82). The ICC of the ACS-NL(18-64) percentage retained activities was 0.92 (95% CI 0.86 - 0.96) and the ICC of the importance score per activity was- .76 (95% CI . 0.68-0.89). The ICC of the OBQ11-NL total score was .76 (95% CI 0.62-0.86).Conclusion: All three tools showed good to excellent test-retest reliability in a sample of patients with FSHD or MM, which is promising for its use in clinical practice and research.

The AC, ACS-NL(18­64) and the OBQ11-NL are promising, reliable measures of life balance in patients with neuromuscular diseases.The development of three new instruments for life balance enlarges the possibility for health professionals to measure life balance in clinical practice and research.

Targeting health disparity in breast cancer: insights into women's knowledge of their cancer profile in Malaysia.

OBJECTIVE: Poor health literacy is positively associated with poorer quality of health decision-making and health outcomes in women facing a cancer diagnosis. In developing countries, poor access to complete and accurate information continues to pose a challenge for women. This paper describes the knowledge of Malaysian women with regard to breast cancer and how participation in a self-management program can improve the situation. METHODS: Secondary analysis of data collected during a clinical trial on women newly diagnosed with breast cancer (n=147) was performed to examine baseline knowledge of breast cancer profile. Knowledge levels of women in the experimental (n= 69) group attending a self-management program were compared to a control group (n= 78) to determine change in the level of knowledge over time. RESULTS: At baseline, a high percentage of women were unaware of their breast cancer profile. Not a single woman had knowledge of all six basic characteristics; 83% did not know their HER2 status, type of breast cancer (68%), grade of cancer cell (64%), hormonal receptor status (55%), size of breast cancer (18%) and/or their stage of breast cancer (13%). At post intervention, there was significantly better knowledge within the experimental group. CONCLUSION: Malaysian women in this cohort study demonstrated very low levels of knowledge of their cancer profile. Clinical implications for countering treatment-decision difficulties include the need for a shift in the way information and services are delivered to allow women to take a more active role in their own care. Multi-modal efforts including basic information dissemination to increase women's knowledge can contribute to narrowing of the gap in health disparity.

Attitudes to disability of Russian occupational therapy and nursing students.

Positive student attitudes toward disability are essential to client-centred rehabilitation. Instilling such attitudes in students enrolled in the first occupational therapy (OT) and post-diploma nursing management (NM) courses in Russia was a key objective of the curriculum development team. The team's aim was to combat the traditional Russian attitude of pity, dependence and marginalization. To this end, the introductory classes were developed and taught by teachers from the All Russia Society of Disabled (ARSD). This paper examines the attitudes to disability in Russia and compares the attitudes of three groups of students. Students in the OT and NM programmes (n = 18) in Volgograd were compared to other nursing students in the same college (n = 21) and to nursing students in a Moscow medical school (n = 20). All completed the Scale of Attitudes Toward Disabled Persons (SADP). The Kruskal-Wallis and Mann-Whitney U statistics revealed that students in the OT and NM programmes had significantly more positive scores (P = 0.01) than either of the other groups. This suggests that the strategies adopted by the curriculum team were successful in developing positive attitudes in students.

Evaluating a new mobility device: feedback from women with disabilities in India.

PURPOSE: To gather the opinions of potential wheeled mobility device users at an early stage in the design process to ensure the development of technology which would meet their functional needs. METHOD: Eight women with bilateral lower extremity disabilities living in Gujarat state, India, participated in this study. The women were introduced to a working model of a new wheeled ground mobility device (GADI2) for a brief trial and participated in a feedback interview which solicited information on different aspects of the design, specifically the interface between the device and the user, the physical environment and the sociocultural environment. Both qualitative and quantitative data were collected and analysed. RESULT: Although the overall response to the device was positive, there was a lack of consensus in some of the feedback gathered. There were varying opinions across the participants and recommendations were often in opposition to what would typically be recommended in a traditional rehabilitation setting. CONCLUSIONS: This study investigates and discusses the research findings from a rehabilitation perspective with a focus on the functional versus technical design aspects. The importance of involving potential consumers in the design of technology is highlighted. The small sample size and lack of consensus in some of the results indicates the need for further research and field testing of this new mobility device design.

Designing appropriate rehabilitation technology: a mobility device for women with ambulatory disabilities in India.

Mobility is an essential requirement for personal independence and social participation. For persons with an ambulatory disability, a lack of mobility creates barriers to the realization of these goals. In developed countries, significant research and development has resulted in the technological advancement of assistive devices. Unfortunately, transfer of these technologies to developing countries has proven difficult. Consequently, effort has been directed at designing appropriate technology in these countries--most often in the form of wheelchairs and hand-driven tricycles. For activities within and around the home, however, especially in cultures where many activities are traditionally performed on the floor, wheelchairs and tricycles are often inappropriate solutions. In response to this, a novel mobility device has been designed for use by women with ambulatory disabilities living in rural and low-income areas of India. The device is intended to assist the user in performing activities of daily living which occur within and near the home, and at ground level. To this end, the device conceptually differs from traditional wheelchair designs in that it physically keeps the rider near to the floor. This paper describes the new device as well as the cross-cultural and cross-professional collaborative methodology used in its design.

The mobility needs of women with physical disabilities in India: a functional perspective.

The purpose of this research was to explore the functional mobility needs of women with lower extremity disabilities in Gujarat state, India. Ten women participated in a Mobility Needs Assessment which used multiple data collection methods to gather quantitative and qualitative information in five main areas. The results indicated that the physical environment was diverse, at times unpredictable, and environmental barriers were commonly encountered. The women travelled relatively long distances to perform self-care activities such as bathing and toileting. Furthermore, the women had compensated for their disability by implementing different strategies, such as four methods of locomotion, ten sitting positions, and various methods for carrying objects. Activities of daily living were similar amongst the women, although some women required assistance to complete specific activities successfully. Although the women expressed different views on how they felt about their present level of mobility, all were able to identify activities they wished to perform if they could move more easily. The resulting information contributed towards an area where little has been documented previously.

Needs of people with disabilities used to determine clinical education.

Western rehabilitation techniques were first introduced into China in the early 1980s. The predominantly 'medical model' of health care in China has resulted in a shortage of rehabilitation personnel and limited experience determining the needs of clients. Occupational therapy practitioners in China are learning their new roles and clients, having never had any contact with occupational therapy, are unaware what services can be offered. The purpose of this research was to determine the most frequently self-identified functional problems (in the ares of self-care productivity and leisure) identified by 113 in-patients in four different hospitals in China, in order to assist therapists to develop programmmes that are responsive to clients' needs. Using the Canadian Occupational Performance Measure, both males and females identified significantly more self-care than leisure or productivity problems (P = 0.01). Females identified more productivity problems than males (P = 0.01) while males appeared to consider leisure difficulties as a priority more frequently than women. The study was jointly undertaken by a Canadian and a Chinese researcher. To our knowledge, this is the first time that occupational therapy personnel in China have formally surveyed clients about their rehabilitation needs, in order to develop priorities for programming.

Fatigue secondary to chronic illness: postpolio syndrome, chronic fatigue syndrome, and multiple sclerosis.

Estimates of the percentage of patients with postpolio syndrome, chronic fatigue syndrome, and multiple sclerosis who experience fatigue range from approximately 75% to 100%. In this study we describe the severity of fatigue and its impact on subjects with these three diagnoses. The Fatigue Severity Scale, the Human Activity Profile, and the Nottingham Health Profile were used to measure fatigue, activity, and health status respectively of each diagnostic group as well as a control group. Using a Kruskal-Wallis one-way analysis of variance followed by a Bonferroni-adjusted Mann Whitney U test all diagnostic groups reported significantly higher levels (p = .0000 to p = .002) of fatigue and lower perceived health status than the control group. Subjects with chronic fatigue and multiple sclerosis also had significantly reduced activity levels (p = .002 to p = .01) compared with the control group. Further attention should be directed toward understanding the relationship between fatigue and ability to engage in activities as well as strategies for remediation and/or compensation of the fatigue.

Elbow kinematics during sit-to-stand-to-sit of subjects with rheumatoid arthritis.

Independence in mobility is dependent on the ability to rise from a chair. Elbow kinematics of subjects with rheumatoid arthritis were compared to those of subjects with no known elbow pathology. Through a case study approach, four subjects with varying elbow pathology and symptoms, were compared with a control group of 10 subjects on four kinematic variables. Results indicated that whereas the overall movement pattern was similar between the two groups, a trend toward increased deviation occurred with increased elbow involvement (as measured using the Morrey Elbow Evaluation). The total time taken to complete the task increased and the maximum velocity decreased as scores on the Morrey Evaluation decreased. When the minimum flexion angle (maximum extension) used during the activity was compared with the minimum flexion angle available, the angle used was consistently 15 degrees to 20 degrees less than that available. This possible need for a residual range raises questions about the generally accepted belief that activities require between 30 degrees to 130 degrees of flexion and 100 degrees of rotation.

Reliability of an optoelectric system to measure elbow kinematics.

Motion analysis of the upper extremity during functional activities has only recently become more accessible. An optoelectric system (WATSMART) was subjected to testing using first a calibration dummy and then human subjects. The mean differences between the system calculated angles and those measured with potentiometers on a calibration dummy were less than 1.6° in all three planes. The test-retest reliability of the system when measuring elbow motion of human subjects yielded acceptable repeatability for measurement of functional activities. Calculation of the least significant difference found that minimum differences from 4 to 14° in flexion and from 10 to 19° in rotation can be detected using the reported set-up and protocol.

Elbow kinematics during sit-to-stand and stand-to-sit movements.

The sit-to-stand and stand-to-sit movements of 10 healthy women (mean age 52.4 years) were subjected to a descriptive analysis that yielded a definition of phases, determination of the peak angles reached, maximum angular velocity during each movement, and the sequencing of key events. While subjects showed little intrasubject variability, intersubject variability was evident. Subjects differed in the joint angles and angular velocity recorded, but the sequence of flexion/extension and rotation events were unchanged. Changes in direction of flexion/extension and rotation tended to occur very close in time, if not at the same time.

Activity and post-polio fatigue.

Fatigue was studied in 12 subjects with post-polio sequelae (PPS). Results of the Fatigue Severity Scale (FSS) demonstrated a mean score of 4.8 +/- 1.6 (non-disabled scores = 2.3 +/- 0.7). The Human Activity Profile (HAP) was not sensitive enough to measure fatigue. Fifty percent of subjects scored below the first percentile based on age and sex matched norms. The Activity Record (ACTRE) results revealed that subjects spent 5% of their time resting and 1% in planning or preparation activities. Fatigue peaked in the late morning or early afternoon and was relieved by rest periods. Use of energy conservation and work simplification skills along with frequent rest periods was suggested as a possible method for managing PPS fatigue.