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Background: To achieve scientific goals, researchers often require integration of data from a primary electronic health record (EHR) system and one or more ancillary EHR systems used during the same patient care encounter. Although studies have demonstrated approaches for linking patient identity records across different EHR systems, little is known about linking patient encounter records across primary and ancillary EHR systems., Objectives: We compared a patients-first approach versus an encounters-first approach for linking patient encounter records across multiple EHR systems., Methods: We conducted a retrospective observational study of 348,904 patients with 533,283 encounters from 2010 to 2020 across our institution's primary EHR system and an ancillary EHR system used in perioperative settings. For the patients-first approach and the encounters-first approach, we measured the number of patient and encounter links created as well as runtime., Results: While the patients-first approach linked 43% of patients and 49% of encounters, the encounters-first approach linked 98% of patients and 100% of encounters. The encounters-first approach was 20 times faster than the patients-first approach for linking patients and 33% slower for linking encounters., Conclusion: Findings suggest that common patient and encounter identifiers shared among EHR systems via automated interfaces may be clinically useful but not "research-ready" and thus require an encounters-first linkage approach to enable secondary use for scientific purposes. Based on our search, this study is among the first to demonstrate approaches for linking patient encounters across multiple EHR systems. Enterprise data warehouse for research efforts elsewhere may benefit from an encounters-first approach., Competing Interests: Conflict of Interest None declared.

Objectives: Individuals with substance use disorders (SUDs) have unique reproductive health needs. The aim of this study was to evaluate these needs and assess the acceptability of family planning service delivery of SUD treatment clients., Methods: Reproductive health needs of drug treatment clients were assessed using a cross-sectional anonymous survey in 4 treatment sites in Baltimore City, MD. Surveys were distributed by staff. Contraceptives assessed included sterilization, intrauterine devices, implants, injections, pills, patches, rings, condoms, spermicide, withdrawal, and the rhythm method. Results are stratified by sex and between those using and not using highly effective contraceptive methods., Results: A total of 115 women and 95 men completed the survey (80% younger than 50 years), with 39% of women and 54% of men reporting using condoms, but only 24% of women and 26% of men reporting consistent use. All other methods were used by less than 12% of the sample. Only 20% of sexually active women reported using a highly reliable form of contraception and only 53% were using any form of contraception at all. Contraceptive use correlated inversely with age, but did not correlate with having had sexually transmitted infection testing or other preventive health services. Although more than 90% of participants had access to health care services in the past 3 years, 25% of women and 33% of men reported difficulty accessing health care providers. The majority of respondents said they would likely use family planning services if available at their SUD treatment (83% of women and 58% of men)., Conclusions: Men and women in SUD treatment have unmet reproductive health needs. As SUD treatment moves toward greater integration, the programmatic inclusion of family planning services should be considered.

The present article describes a successful novel therapeutic intervention with Aredia with one child with Rett syndrome, after suffering from six pathological fractures within less than 3 years due to severe osteoporosis. Since the initiation of the treatment (3 years ago), the child has not suffered any fractures. Patients with chronic diseases and those with disabilities or on anticonvulsant medications are at risk for low bone density and possibly for the resultant pathologic fractures that define osteoporosis in children. Individuals with Rett syndrome (RS) have been shown to have low bone mineral density (or osteopenia) at a young age. If osteoporosis occurs in a girl with RS, it can inflict pain and seriously impair the child's mobility and quality of life. The present article describes a case study of a child with RS (showing an average of 1.75 fractures annually for the 4 years preceding the treatment) before and after a treatment with Aredia. Patient received 30 mg/day for 3 days on a once every 3-month cycle. There was a 45 % improvement in bone mass density (BMD) values from pre-post-intervention. The child had no fractures in the 3 years posttreatment. This finding is significant (p < 0.03). The BMD Z-scores of the child showed severe osteoporosis (Z-score of -3.8) at pre-intervention and are elevated to osteopenia levels (Z-score of -1.3) at post-intervention measurements. All measurements suggest that the treatment successfully reversed the osteoporotic process and prevented further fractures. This change caused great relief to the child and her family and an improvement in their quality of life. The findings support the ability (in one case) to reverse the progression of osteoporosis in individuals with Rett syndrome showing severe osteoporosis with multiple fractures.

The dearth of information on the pain experience of individuals with intellectual and developmental disabilities (IDD) calls for a more comprehensive understanding of pain in this population. The Non-Communicating Adults Pain Checklist (NCAPC) is an 18-item behavioral scale that was recently found to be reliable, valid, sensitive and clinically feasible to assess pain levels in adults with IDD. The aim of the present article is to propose and examine a pain model for adults with IDD. The procedure involved videotaping 228 participants (mean age: 38.7 years) before and during an influenza vaccination. The pain model was constructed using previously collected data, by means of confirmatory factor analysis of the sum scores, using the half split procedure. The model was tested on a randomized group of participants (N=89) for generalization. The constructed model seems to reflect two categories of pain responses: a basic response consisting of physiological measures and body reaction, and an advanced response consisting of vocal and emotional reactions, as well as facial and protective expressions. The model presented excellent Goodness of Fit Index (0.99) and an acceptable RMSEA value (0.061). We conclude that the current article presents a first-of-its-kind model of pain behavior in adults with IDD., (Copyright © 2012 Elsevier Ltd. All rights reserved.)

Introduction: Rett syndrome (RTT) is a neurological disorder usually associated with a mutation in the MECP2 gene. Conductive Education (CE) is an educational approach that has not yet been explored with regard to children with RTT., Objective: Assessing functional abilities of individuals with RTT due to CE intervention., Design: A single subject, AB design. method: This study assessed the functional skills of three girls with RTT aged 3-5 years before and during participation in a CE programme., Results: Gross motor function improvements were observed at the end of the intervention period. Gross motor skills declined slightly in all participants over the summer holidays but improved again a few months after recommencement of the educational year., Conclusion: Replication of this study with more subjects is justified as is comparison with other educational methods. A home intervention programme should be constructed to prevent decline of skills over the summer vacation.

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.

Background: The Snoezelen is a multisensory intervention approach that has been implemented with various populations. Due to an almost complete absence of rigorous research in this field, the confirmation of this approach as an effective therapeutic intervention is warranted., Method: To evaluate the therapeutic influence of the Snoezelen approach. Twenty-eight relevant articles relating to individual (one-to-one) Snoezelen intervention with individuals with intellectual and developmental disabilities (IDD) were reviewed. A meta-analysis regarding the significance of the reduction of maladaptive behaviour and the enhancement of adaptive behaviour was implemented. An analysis of standardised mean differences was used through the use of fixed effect models., Results: The primary finding was that the Snoezelen approach, when applied as an individual intervention for individuals with IDD, enabled significant and large effect size in adaptive behaviours, with generalisation to the participants' daily life., Conclusions: Weaknesses in the examined research methodologies, the heterogeneity between research designs, the small number of available research projects, and the small number of participants in each research project, prevent a confirmation of this method as a valid therapeutic intervention at this time.

In this study, the side effects of contingent shock (CS) treatment were addressed with a group of nine individuals, who showed severe forms of self-injurious behavior (SIB) and aggressive behavior. Side effects were assigned to one of the following four behavior categories; (a) positive verbal and nonverbal utterances, (b) negative verbal and nonverbal utterances, (c) socially appropriate behaviors, and (d) time off work. When treatment was compared to baseline measures, results showed that with all behavior categories, individuals either significantly improved, or did not show any change. Negative side effects failed to be found in this study.

Rett syndrome (RS) is a neurological disorder, affecting mainly females, caused by MECP2 mutations usually resulting in severe physical disability. Due to the physical challenges faced by the individual with RS and her family, her rehabilitation program should support her throughout different daily activities, contexts, and surroundings. Rehabilitation interventions to reverse physical impairments include exercise of various types and different physical modalities. Nevertheless, in the vast majority of cases, hands-on therapeutic intervention opportunities are available for the client through a minute part of her waking hours. Hence, a supplementary system is required in order to engulf the child with a comprehensive network of support. Supplementary intervention can support physical impairment by introducing adaptive techniques, environmental modifications, and assistive technologies. The therapy program of an individual with RS should include the use of assistive technology when such devices improve the user's performance. The term "supplementary management" relates to the fact that this intervention may be performed by nonprofessionals with the supervision of a qualified therapist. Such an intervention can further support the therapeutic goals of the child, at a time when direct intervention is not supplied. The present article will review the available literature on the topic of assistive technology, incorporating the clinical knowledge of the author in the field of RS.

The individual with Rett syndrome (RS) displays an array of challenging difficulties in all areas of daily living. Since there is no cure for the disorder at this moment, parents of the individual with Rett search for different interventional modalities that will improve the condition and quality of life for their child. During the last few years, many individuals with RS have experienced different kinds of interventions. This paper presents these methods with relevant case stories for others to share the possibilities. This paper reviews the following interventions: animal-assisted therapy, such as dolphin therapy and dog-assisted therapy; auditory integration training; hyperbaric chamber; manual therapy, such as acupuncture/acupressure, aromatherapy, craniosacral therapy, Mayo facial release, Treager massage, chiropractor, and Reiki; mental modification techniques, such as Lovas and cognitive rehabilitation; motoric interventions, such as advanced biomechanical rehabilitation, patterning/Doman-DeLacato approach, and yoga. The present paper is not a recommendation for any of the above-mentioned techniques, but merely a review of different interventions available for the inquisitive parent of the individual with RS.

Persons with Down syndrome (DS) are at risk for a life of inactivity that can result in a multitude of medical problems including heart and vascular diseases. This review presents findings regarding the physical status of individuals with DS, as well as proper interventions found to improve the physical fitness and general health for this population. This review was written with the intent to suggest practical directions in planning and implementing quality physical intervention programs for this population.

Rett syndrome (RS) is a neurodevelopmental syndrome of genetic origin that mainly affects females. Individuals diagnosed with RS exhibit a variety of functional difficulties that impair their quality of life. One of the affected systems is the digestive system, where 74% of persons with RS have abnormal functioning. The affected digestive system causes this population to present an array of problems, such as gastroesophageal reflux (GER), constipation, and malnutrition, leading to failure to thrive (FTT), which resolves in reduced functional ability. Due to the severe effects of the dysfunctional digestive system of individuals with RS, this article will describe the problems common to this population, as well as propose some clinical suggestions for intervention.

Rett syndrome (RS) is a neurological disorder affecting mainly females. RS is considered the second most frequent cause for severe and complex neurological dysfunction in females after Down syndrome. Patients with RS are characterized by an array of neurological and orthopedic difficulties that mandate an intensive therapeutic intervention program for the duration of the individual's life. Many aspects of the client's well-being and functional status depend on the therapeutic intervention she receives and on her compliance to it. This article will briefly review common intervention approaches for individuals with RS and their present day's application. Due to the notion that individual intervention is the foundation on which progress and development of the functional gains rests, the present article will place basic guidelines for individual intervention with clients with RS. The article is mainly based on the clinical experience of the author and others working with individuals with RS.

Rett syndrome (RS) is a genetic disorder affecting mainly females. In the majority of cases, it is caused by a mutation in MECP2, an X-linked gene, and considered the most common multidisabling genetic disorder in females after Down syndrome. This article is an introduction to RS. It presents the basic understanding of common characteristics typical of this disorder, and the variants from the classical expression of RS. The present article will review the current literature on RS, specially focusing on the clinical characteristics of the disorder. The intention of the article is to set a clear, up-to-date picture of the individual with RS to prepare the clinician for their future meetings with this population.

Rett syndrome (RS) is a neuro-developmental syndrome of genetic origin, which mainly affects women. Individuals diagnosed with RS exhibit a variety of functional difficulties, which impair their quality of life. The variety of impairments and the differences between each child makes it necessary to administer skilled treatment, individually tailored to each client. Since the foundation of proper treatment is based on a structured, well administered, insightful assessment, the individual with RS with her complex array of difficulties should benefit from such a procedure. This notion has led to the establishment of the Israel Rett Syndrome Center. The center includes a medical branch located at the Safra Shildren's Medical Center at Tel Hashomer and an education/rehabilitation team, who performs assessments in special education facilities and residential settings throughout Israel. The assessment team works by means of arena assessment according to the concept of play-based assessment. This article presents the working model used by the education/rehabilitation team at the Israeli Rett Syndrome Center. The principles and working characteristics of the Israel Rett Syndrome Center team are suggested here as a potential model for establishing additional teams, presenting similar evaluation services for other individuals with RS as well as for analogous populations.

Individuals with Rett syndrome (RS) present a vast array of orthopedic and neurological difficulties. Typical problems, which may need to be addressed, when treating this population are functional limitations, low cardiovascular capacity, hypotonia, ataxia, apraxia, loss of transitional movements, spasticity, scoliosis and/or kyphosis, loss of ambulation, loss of hand function, foot deformities, and spatial disorientation. Coping with such difficulties and overcoming the associated limitations carry a wearisome task for the individual with Rett as well as for her family. An informed and intensely applied physical therapy regime can help the child and the family cope and even overcome the above-mentioned limitations. The present article presents some insights regarding the intervention with individuals with RS, an overview of typical neuromuscular problems associated with RS, and appropriate suggestions pertaining to clinical intervention that have been found to contribute to this population's well-being. The information presented is mainly based on the clinical knowledge of the authors.

Rett syndrome (RS) 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 continuous intervention programs to be administered on a regular basis throughout life. Many of these individuals with RS show fear of movement and, therefore, find it hard to accept external facilitation (so common in physical therapy intervention). In a search for novel intervention techniques that might improve their ability to cope with difficulties in daily situations, while also reducing their difficulty in handling motion inflicted by an external physical facilitator, we examined the use of the Snoezelen room. The Snoezelen, also known as the controlled multisensory environment, can provide a soothing atmosphere that appeals to the individual with RS, while at the same time it can improve physical, sensorial, and functional abilities. This article suggests various intervention goals that are appropriate for individuals with RS at different stages of the disorder. Since the management of young children with RS in the multisensory environment has been discussed at length in the past, this article will mainly describe intervention with adults with RS, focusing on three case stories. The present article reviews the available scientific materials on the topic of Snoezelen, incorporating clinical knowledge in the field of RS and suggesting this approach as an appropriate intervention method for this population.

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 client's 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.

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 RCT's (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 everyone's leisure time, since there are enough proven physical mental, and social benefits to physical activity besides well-being.

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.

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 life. Resistance to physical activity has driven the authors in a search for new intervention techniques which might improve the ability to cope while reducing difficulty in handling an external physical facilitator. Snoezelen, or multi-sensory environment, can provide a soothing environment appealing to the child or adolescent with Rett syndrome while at the same time improving physical abilities. The article reviews Rett syndrome typical phenotype and suggests suitable activities that might take place in the multi-sensory environment.

Fifty-two case-hardened, severely self-abusive and aggressive autistic and retarded students, living in six different community residences, were trained to exit their residences, without the presence or assistance of staff, when a fire alarm sounded at night. On a pretest, prior to an 11-week period of intensive environmental and behavioral interventions, only 25% of the students exited within 2 1/2 minutes and independent of staff assistance. At posttest, 100% exited successfully, in a mean evacuation time of 60 seconds. The study was conducted at the Behavior Research Institute (BRI).