Occupation Based Telerehabilitation Intervention for Adolescents with Myelomeningocele: A Pilot Study.

AIMS: This pilot study examined the impact of an occupation based intervention using a telerehabilitation format with adolescents with myelomeningocele (MMC). METHODS: We conducted a nonrandomized pilot study including four adolescents ages 14-18 with MMC. The intervention program included 10-12 sessions of the Cognitive Orientation to daily Occupational Performance remotely delivered via videoconferencing. Outcome measures included the Canadian Occupational Performance Measure (COPM), Wee-Functional Independence Measure;(Wee-FIM), and the Pediatric Quality of Life Inventory (PedsQL). Assessments were administered at baseline, post intervention and at three-month follow-up. RESULTS: Following intervention, participants rated their performance as having improved 2 points on the COPM for 8 out of 12 trained goals and on 2 out of 8 untrained goals. At 3-month follow-up improvement was reported on 9 out of 12 trained goals and 3 out of 8 untrained goals All participants made clinically significant improvements on the Wee-FIM total score following intervention and improvements were maintained at 3-month follow-up. The intervention effect on the PedsQL was inconclusive. Feedback interviews suggested that participants experience high satisfaction from the results and implementation of the intervention. CONCLUSIONS: Our results demonstrate potential efficacy of occupation based teleintervention for adolescents with MMC.

Pediatric rehabilitation delivery: discussion is an antidote to disconnection and discontent.

Pediatric rehabilitation is fundamentally different from that of adults. Child physiology differs significantly from that of adults, necessitating specialized rehabilitation approaches. Unique injuries and varying metabolic rates underscore the need for tailored care, which changes over the years as the child grows and develops. Waiserberg's paper, "When Everyone is Responsible, No One Takes Responsibility": Exploring Pediatric Physiotherapy Services in Israel," sheds light on a critical issue. While senior practitioners oversee policy implementation and service delivery, practical physiotherapy treatment lacks continuous monitoring. This is a critical issue. Ideally, every child who requires long-term clinical therapeutic interventions to keep up with peers in mobility, communication and cognitive skills should be assessed by specialists several times throughout the school years, and their personalized rehabilitation plan discussed, reviewed, and adjusted according to their progress. The absence of a standardized protocol for overseeing and directing comprehensive rehabilitation plans leaves therapists feeling alone and adrift, whether working in schools or medical settings. Such an assessment would be an opportunity to create a registry, which is currently nonexistent. The collected data would be a priceless resource in policy decision-making and service planning.

A multidisciplinary program to wean infants and toddlers from long-term tube feeding: Lessons learned from a retrospective study.

Objectives: Children maintain growth and development by ingesting adequate calories and nutrients, typically achieved via oral intake of food and liquids. When unable to eat and drink orally, they need temporary or permanent enteral nutritional support via nasogastric, nasoduodenal, gastrostomy, or jejunostomy tubes. The objectives of this retrospective study are to describe lessons learned from operating a weaning program at ALYN Hospital for over a decade, the characteristics of the patient population (gender, age, medical condition, and type of tube feeding and hospitalization), and which of these characteristics correlate with successful weaning. Methods: Data were obtained from the hospital's secure database of 82 infants and toddlers, 37 boys (45.4%) and 45 girls (54.9%) aged 3 months to 10.8 years who took part in a tube feeding intervention from 2011 to 2020. Descriptive and correlational analyses were performed to characterize the participants and their responses to the program. Results: Fifty-one children (62.2%) were less than 2 years, 26 children (31.7%) were 2-4.11 years, and only 5 children were aged 5 years (6.1%) and older. Fifty-six children were successfully weaned from tube feeding, 9 children were eventually successful, but the process took longer than anticipated, 11 children were partially weaned and 6 were not successfully weaned. Conclusions: These results are discussed within the context of a successful weaning program related to participant characteristics (medical condition, age, gender, and weight), and subsequent recommendations are offered related to the intervention setting, duration, and intensity; redefining success in weaning and the need for long-term follow-up.

Lessons Learned during a Naturalistic Study of Online Treatment for Pediatric Rehabilitation.

The COVID-19 pandemic forced many health care providers to modify their service model by adopting telehealth and tele-rehabilitation with minimal time to plan for its execution. ALYN-Pediatric Rehabilitation Hospital in Jerusalem, Israel, responded with alacrity by providing a broad range of rehabilitation services to young people via online therapy during the first 5 months of the pandemic. The objectives of this naturalistic study were: (1) to monitor usage and user experience of online rehabilitation provided to young people receiving out-patient sessions of physical therapy, occupational therapy, speech and language therapy and psychology and (2) to consider the advantages and disadvantages of retaining this model of online treatment in full or in part post-COVID-19. The online rehabilitation treatment program was provided to 147 young people, aged 3 months to 20 years (mean 8.5 y; SD 5.3), and monitored and evaluated via data from the medical records as well as interviews, questionnaires and focus groups. The results use descriptive and inferential statistics to analyze data on the types and frequencies of therapy provided to 147 young people. Over a five month-period, 2392 therapy sessions were provided, 61 therapists from four disciplines were involved and 56.4% of the young people received two or more types of therapies via online rehabilitation. A repeated measures ANOVA showed significant differences over time per therapy. Feedback and recommendations about the process from therapists, parents and young people were collected during two focus groups of the professional staff (n = 12), parents and young people (parents n = 5, young people n = 3). Tele-rehabilitation services were perceived to be beneficial and effective by the great majority of young people, their parents and the healthcare professionals. The results are discussed within the context of conventional therapy as well as in comparison to reports of other online services for similar populations. We conclude that a hybrid approach in which in-person therapy sessions are coordinated with synchronous, online sessions, will provide a best-case fit for young people with chronic disabilities.

Salivary bacteria and oral health status in children with disabilities fed through gastrostomy.

OBJECTIVES: This study examined caries level, amount of calculus, and oral microbial environment in gastrostomy tube (GT)-fed children compared with healthy children and children with disabilities orally fed (PO). STUDY DESIGN: The study group consisted of 12 GT-fed children and the two control groups consisted of 16 children with disabilities orally fed and 17 healthy children. DMF-T/dmf-t index, calculus index, Mutans Streptococci (MS), Lactobacilli (LB) levels and salivary buffer capacity were examined. RESULTS: DMF-T/dmf-t index was significantly lower in the tube-fed group. Calculus index was highest in the tube-fed group. MS and LB levels were the lowest in the tube-fed children. Correlation was found between MS and DMF-T/dmf-t. CONCLUSIONS: Tube-fed children demonstrated significantly higher calculus levels and less caries, MS, and LB levels then healthy children or children with disabilities eating PO.

Cultural competence in a context of ethnic tension.

This commentary describes how the first program for enhancing cultural competence in an Israeli healthcare facility was implemented at the ALYN Hospital Pediatric and Adolescent Rehabilitation Center in Jerusalem, and the lessons that can be learned from the ALYN experience for other healthcare facilities attempting to enhance their cultural competence, particularly in environments of heightened inter-cultural tension. A structured program was developed to educate hospital staff and optimize the hospital's administrative functioning towards the goal of enhanced cultural competence. The program was initiated with an international conference on site to promote awareness of the concept, and included, among other steps, the appointment of a senior administration "Coordinator of Cultural Competence", improvements in translation services, regular educational seminars, the opening of a Muslim prayer room in the hospital, and accommodations for Sabbath and Ramadan observance. Enhancing cultural competence was found to be an ongoing work-in-progress, with unanticipated cultural challenges constantly emerging, and demanding ad-hoc solutions. Some elements of the program encountered resistance from members of staff, and occasionally from members of the hospital's dominant patient cultures. Overall, enhanced cultural competence at ALYN brought benefit to both patients and the institution, ranging from a more pleasant patient experience to improved patient adherence to treatment plans, better patient-caregiver communication and a more positive and cohesive professional team and work environment.

A Chemical-Biological-Radio-Nuclear (CBRN) Filter can be Added to the Air-Outflow Port of a Ventilator to Protect a Home Ventilated Patient From Inhalation of Toxic Industrial Compounds.

OBJECTIVES: Chemical-biological-radio-nuclear (CBRN) gas masks are the standard means for protecting the general population from inhalation of toxic industrial compounds (TICs), for example after industrial accidents or terrorist attacks. However, such gas masks would not protect patients on home mechanical ventilation, as ventilator airflow would bypass the CBRN filter. We therefore evaluated in vivo the safety of adding a standard-issue CBRN filter to the air-outflow port of a home ventilator, as a method for providing TIC protection to such patients. METHODS: Eight adult patients were included in the study. All had been on stable, chronic ventilation via a tracheostomy for at least 3 months before the study. Each patient was ventilated for a period of 1 hour with a standard-issue CBRN filter canister attached to the air-outflow port of their ventilator. Physiological and airflow measurements were made before, during, and after using the filter, and the patients reported their subjective sensation of ventilation continuously during the trial. RESULTS: For all patients, and throughout the entire study, no deterioration in any of the measured physiological parameters and no changes in measured airflow parameters were detected. All patients felt no subjective difference in the sensation of ventilation with the CBRN filter canister in situ, as compared with ventilation without it. This was true even for those patients who were breathing spontaneously and thus activating the ventilator's trigger/sensitivity function. No technical malfunctions of the ventilators occurred after addition of the CBRN filter canister to the air-outflow ports of the ventilators. CONCLUSIONS: A CBRN filter canister can be added to the air-outflow port of chronically ventilated patients, without causing an objective or subjective deterioration in the quality of the patients' mechanical ventilation. (Disaster Med Public Health Preparedness. 2018;12:739-743).

Femorotibial ankylosis in a child with Roberts syndrome: an "aggressive" approach to habilitation.

INTRODUCTION: Roberts syndrome is a rare autosomal recessive disorder affecting many organs. The marked disabilities are mainly due to extreme short stature and severe limb deformities. Treatment in children who survive focuses on surgical correction of facial and limb defects. CASE DESCRIPTION: Z.B., a 9.5-year-old girl, was diagnosed at birth with Roberts syndrome. She gradually achieved gross and fine motor developmental milestones and spontaneously ambulated by "walking" on her knees. Her primary obstacle to further improvement was the severe fixed flexion deformities of the knees. At age 5 years and 9 months, she underwent surgery which involved quadriceps splitting, exposure, and then excision of the bony ankylosis. Stable fixation was achieved with crossed Kirschner wires. Quadriceps reefing was then performed, and long-leg casts applied. Currently, she walks independently without orthoses and functions as well as her height permits. DISCUSSION: Knee ankylosis is a very rare entity, and the affected patients are usually treated nonoperatively. Careful evaluation and appropriate surgery afforded our patient a better quality of life and should be considered in other patients.