Meir Lotan

Improving physical fitness of individuals with intellectual and developmental disability through a Virtual Reality Intervention Program

Individuals with intellectual and developmental disabilities (IDD) are in need of effective physical fitness training programs. The aim was to test the effectiveness of a Virtual Reality (VR)-based exercise program in improving the physical fitness of adults with IDD. A research group (N=30; mean age=52.3+/-5.8 years; moderate IDD level) was matched for age, IDD level and functional abilities with a control group (N=30, mean age=54.3+/-5.4 years). A 5-6 week fitness program consisting of two 30 min sessions per week included game-like exercises provided by the Sony PlayStation II EyeToy VR system. Changes in physical fitness were monitored by the Energy Expenditure Index (EEI), the modified 12 min walk/run and the Total Heart Beat Index (THBI). Significant (p<0.05) improvements in physical fitness were demonstrated for the research group in comparison to the control group for the Modified Cooper test and the THBI but not for the EEI test. The EEI, Modified Cooper and THBI tests were found feasible to evaluate physical fitness levels and change of individuals with IDD under clinical conditions. VR technology intervention was suitable for adults with IDD and resulted in significant improvements in the physical fitness levels of the participants.

Physical fitness and functional ability of children with intellectual disability: effects of a short-term daily treadmill intervention.

Persons with intellectual disability (ID) and associated multiple disabilities have been found by many researchers to be a population with deficient physical fitness measures, which can be explained by an inactive lifestyle, a result of lack of awareness of the positive physical effects of physical exercise, or lack of motivation for any motor activity. Various plans for physical exercise have been put forward, but many are found impractical in nonresearch-based intervention. In this study, 15 children with ID on a motor functioning level of 7—14 months used a treadmill daily for 2 months. Our findings indicated a most significant improvement in the level of physical fitness of the participants (p < 0.005), as measured by pulse at rest and during effort. The improvement in physical fitness modestly (r = 0.5), but significantly (p < 0.05), correlated with a significant (p < 0.0007) improvement in functional ability of the participating children. Further examination a year after intervention terminated showed a return to preintervention pulse-at-rest values. The research examined the treadmill training method and found that it can be operated with the support of an unskilled staff person under the supervision of a physiotherapist. The research was performed under real-life conditions, enabling relatively easy implementation in the existing conditions of special education centers. This method is a type of exercise that is easy to operate without entailing long-term budgetary expenses and might improve the health status of children with ID, who are a population at risk for developing heart-related diseases at a young age.

Clinical guidelines for management of bone health in Rett syndrome based on expert consensus and available evidence

Objectives We developed clinical guidelines for the management of bone health in Rett syndrome through evidence review and the consensus of an expert panel of clinicians. Methods An initial guidelines draft was created which included statements based upon literature review and 11 open-ended questions where literature was lacking. The international expert panel reviewed the draft online using a 2-stage Delphi process to reach consensus agreement. Items describe the clinical assessment of bone health, bone mineral density assessment and technique, and pharmacological and non-pharmacological interventions. Results Agreement was reached on 39 statements which were formulated from 41 statements and 11 questions. When assessing bone health in Rett syndrome a comprehensive assessment of fracture history, mutation type, prescribed medication, pubertal development, mobility level, dietary intake and biochemical bone markers is recommended. A baseline densitometry assessment should be performed with accommodations made for size, with the frequency of surveillance determined according to individual risk. Lateral spine x-rays are also suggested. Increasing physical activity and initiating calcium and vitamin D supplementation when low are the first approaches to optimizing bone health in Rett syndrome. If individuals with Rett syndrome meet the ISCD criterion for osteoporosis in children, the use of bisphosphonates is recommended. Conclusion A clinically significant history of fracture in combination with low bone densitometry findings is necessary for a diagnosis of osteoporosis. These evidence and consensus-based guidelines have the potential to improve bone health in those with Rett syndrome, reduce the frequency of fractures, and stimulate further research that aims to ameliorate the impacts of this serious comorbidity.

A modified version of the non-communicating children pain checklist-revised, adapted to adults with intellectual and developmental disabilities: sensitivity to pain and internal consistency.

UNLABELLED Despite enhanced interest in manifestations of pain in adults with intellectual and developmental disabilities (IDD), the characteristics of pain behavior in this group have seldom been examined. The aim of the present study was to provide a sensitive pain behavior scale for adults with IDD. The participants, 228 adults (mean age, 38.7 years) with different levels of IDD, were videotaped before and during an influenza vaccination and scored using the Non-Communicating Childrens Pain Checklist-Revised (NCCPC-R). Observed pain behaviors not captured by the NCCPC-R, was also registered. Sensitivity to pain of all 27 items was examined by Signed Rank test, internal consistency by Cronbachs alpha, and sensitivity to change of the total scale by Standardized Response Mean (SRM). Thirteen items were excluded from the original NCCPC-R scale; 4 new items were added, making a modified scale of 18 items. This scale, named the Non-Communicating Adults Pain Checklist-Revised (NCAPC), was rescored and examined for psychometric properties in a random sample (N = 89). Sensitivity to pain of all items (P < .05) and high internal consistency (alpha = 0.773) were demonstrated. Large sensitivity to pain at all levels of IDD was shown (SRM, 1.20 to 2.07). Better psychometric properties were demonstrated for NCAPC than NCCPC-R in the target population. PERSPECTIVE This article presents initial psychometric properties of a new measure, the NCAPC, evaluating pain behavior in adults with IDD. This measure could help clinicians to better capture pain expressions in this population and contribute to better pain management for this group of patients.

Virtual reality as means to improve physical fitness of individuals at a severe level of intellectual and developmental disability.

Individuals with intellectual and developmental disabilities (IDD) are in need of effective and motivating physical fitness training programs. The aim was to test the effectiveness of a virtual reality (VR)-based exercise program in improving the physical fitness of adults with severe IDD when implemented by on-site caregivers. A research group (N=20; mean age+/-standard deviation=47.9+/-8.6 years; severe IDD level) was matched for age, IDD level and functional abilities with a comparison group (N=24, mean age=46.2+/-9.3 years; severe IDD level). An 8-week fitness program consisting of 2-3 30-min sessions per week included game-like exercises provided by the IREX/GX video capture VR system. Changes in physical fitness were monitored by changes in heart rate at rest. A significant (P<0.005) reduction in heart rate was demonstrated for the research group. No change in heart rate was monitored in the comparison group. Despite statistically significant improvements in heart rate, the results are not strong enough functionally to claim that this program improved physical fitness of individuals with severe intellectual disability.

Reliability of the Non-Communicating Adult Pain Checklist (NCAPC), Assessed by Different Groups of Health Workers.

Evaluating pain in adults with intellectual and developmental disability (IDD) is a challenge. The Non-Communicating Adults Pain Checklist (NCAPC) was recently developed from the Non-Communicating Childrens Pain Checklist (NCCPC) and examined in a group of adults with IDD (N=228) and found to hold satisfactory construct validity, internal consistency and sensitivity to pain. To further explore its basis for clinical use, intra and interrater reliability of the NCAPC was investigated. Data collection was done by videotaping the participants before and during influenza vaccination. Intrarater reliability was evaluated by the first author on a group of 50 randomly selected individuals (mean age 42.5, range 19-72) and was found at 0.94. Interrater reliability was investigated in two stages. In the initial step different groups of health care workers (caregivers, nurses, case managers, and therapists), each including five raters, viewed a sample of 12 adult participants with IDD (3 at each level of IDD mean age was 49 years, range 16-72), that were extracted from the population sample. Interrater reliability of all raters within the groups varied from low to very high (ICC(1,1)=0.40-0.88). Interrater reliability was very high in caregivers. The Physical -and Occupational therapists are one group were considered potential users of the measure. In the second stage 3 participants from each of the groups showing high interrater reliability (caregivers and therapist) evaluated interrater reliability in a randomly selected group of 40 individuals (mean age 41.2, range 15-72). Interrarter reliability for the therapists and caregivers was found at 0.91 and 0.92 correspondingly. The researchers conclude that that the NCAPC have been found to hold high reliability values.

Physical activity in adolescence. A review with clinical suggestions.

Despite some inconsistencies in research methodologies, most findings support a positive correlation between participation in physical activities and well-being in adulthood. The results are consistent across the life span of both genders. Favorable connection between physical exercise to physical, psychological, emotional and educational benefits has been constantly proven. Despite such results a comparison between present to past findings show a global tendency for sedentary life style and reduced physical activities in many countries across ages and genders. There are claims that achieving an adult healthy life style is rooted in habits acquired at early ages, thus pointing at childhood and adolescence as the starting point of an active and healthy adulthood. The present article reviews the current literature and findings relating to physical activity with better health and an emphasis on adolescence. Factors correlated to participation of adolescents in physical activities are presented and some clinical issues to promote such activity are discussed. The authors strongly recommend enhanced initiation of community based easily accessed physical exercise programs, for children and adolescents.

A review of physical activity and well-being

The World Health Organization defines health as a state of complete physical, mental and social well-being. Based on this declaration the construct of well-being has been researched. Many researchers have set a clear path between physical exercise and feeling better or the connection of reduced physical activity and diminished health. Nevertheless the allusive subjective psychological construct of well-being has not been directly connected to physical activity. Despite abundance of technical evidence that supports notions of correlations between physical exercise and well-being, the scientific proof is not within our reach yet. Some of the basic reasons are the facts that the definition of well-being is unclear, not many RCTs (Randomized Control Trials) have been performed, dose related results are scarce and many articles use small populations and different methodology. Until an actual research based connection will be found between physical exercise and well-being, the authors strongly recommend physical activity as part of everyones leisure time, since there are enough proven physical mental, and social benefits to physical activity besides well-being.

Osteoporosis in Rett syndrome: A study on normal values.

Osteoporosis is the reduction of calcium density in bones, usually evident in postmenopausal females, yet the tendency for osteoporosis can also be identified at a young age, especially in patients with chronic diseases, disabilities, and on chronic anticonvalsant treatment. Individuals with Rett syndrome (RS) have been found to show signs of osteoporosis at a young age. This condition may cause pathological fractures, inflict pain, and seriously damage mobility. In such cases, the quality of life of the individual and her primary caretakers will be severely hampered. This article reviews the current knowledge of the phenomenon and suggests some clinical directions for the individual with RS who shows signs of osteoporosis. The article also presents novel findings from a screening test of bone strength in 35 individuals with RS at different ages using the Sunlight Omnisense 7000P ultrasound apparatus. The primary results from this investigation showed a strong and significant positive correlation between calcium intake and bone strength (p < 0.0001) as well as bone density Z values (p < 0.005). The occurrence and frequency of fractures were found connected with reduced bone strength in measurements of both the radius (p < 0.0001) and the tibia (p < 0.004) as well as with negative bone strength Z values (p = 0.03). Other findings specified within the content of the article support the implementation of a comprehensive antiosteoporotic preventive management for this population.

Management of young children with Rett disorder in the controlled multi-sensory (Snoezelen) environment

Rett syndrome is a neurological disorder resulting from an X-linked dominant mutation. It is characterized by a variety of physical and perceptual disabilities, resulting in a need for constant therapy programs to be administered on a regular basis throughout the clients life. As the child with Rett disorder (RD) is entering the more obvious, hectic phase of this syndrome (stage II), signs of extreme agitation and discomfort are usually exhibited. This behavior is suspected to reflect damaging chaotic processes accruing in the brain at that time. Experts advise that calming techniques might be helpful for children with Rett during this period. This may be our earliest opportunity to change the course of the disorder. Now that our knowledge of RD has increased and children are being diagnosed at a substantially earlier age, new intervention methods should be introduced for parents and therapists. This may ensure more suitable treatment. The multi-sensory environment may provide a soothing haven, which appeals to the child with RD. This article provides a short review of RD typical phenotype and suggests suitable activities that could take place in the multi-sensory environment with this population at the early stages of appearance of the Rett disorder.