LIMPRINT study - the Turkish experience

Background: Lymphedema and chronic oedema is a major healthcare problem in both developed and non-developed countries The LIMPRINT study is an international health service based study to determine the prevalence and functional impact in adult populations of member countries of the International Lymphoedema Framework (ILF). Methods: 1051 patients from 8 centers in Turkey were recruited using the LIMPRINT study protocol. Data were collected using the core and module tools which assess the demographic and clinical properties as well as disability and QoL. Results: Most of the Turkish patients were recruited from specialist lymphedema services and were found to be female, housewives and having secondary lymphedema due to cancer treatment. The duration of lymphedema was commonly less than 5 years and most of them had ISL Grade 2 lymphedema. Cellulitis, infection and wounds were uncommon. The majority of patients did not get any treatment or advice before. Most of the patients had impaired QoL and decreased functionality, but psychological support was neglected. Although most had social health security access to Lymphedema centres nevertheless access seemed difficult due to distance and cost. Conclusion: The study has shown the current status and characteristics of lymphedema patients, treatment conditions, the unmet need for the diagnosis and treatment as well as burden of the disease in both patients and families in Turkey. National health policies are needed for the prevention, diagnosis and treatment in Turkey that utilise this informative data

The clinical effects of combining postural exercises with chest physiotherapy in cystic fibrosis: A single-blind, randomized-controlled trial

Objectives: This study aims to investigate the effects of postural exercises as an adjunct to chest physiotherapy program on respiratory function, exercise tolerance, quality of life (QoL), and postural stability in patients with cystic fibrosis (CF). Patients and methods: In this single-blind, randomized-controlled trial, 19 pediatric CF patients (11 males, 8 females; mean age:9.36 years; range, 6 to 14 years) were randomly allocated to chest physiotherapy and postural exercise program (Group 1, n=10) or chest physiotherapy program alone (Group 2, n=9) between March 2017 and October 2017. Respiratory functions were assessed with pulmonary function tests, whereas exercise tolerance with the Modified Shuttle Test (MST), quality of life with the Cystic Fibrosis Questionnaire-Revised Child Version (CFQR), and postural stability with the Limits of Stability Test (LOS). All tests were performed before treatment and six weeks, three months, and six months after treatment. Results: Respiratory functions were improved in both groups; however, these changes were not statistically significant. The MST increased after treatment in both groups (p<0.001 and p=0.003 respectively), without a significant difference between the groups. Emotional function and treatment difficulties subdomains in CFQR were significantly increased only in the group with postural exercises (p<0.05). Conclusion: The postural exercise program in addition to chest physiotherapy in pediatric CF patients whose postural changes were not taken place did not cause significant changes in respiratory function, exercise tolerance, and postural stability; however, it affected the emotional state well and improved the compliance with the treatment

The Relationship Between Caregiver Burden and Resilience and Quality of Life in a Turkish Pediatric Rehabilitation Facility

Purpose: To investigate the effect of caregiver burden, resilience, and quality of life of the parents of patients who are followed-up in a tertiary pediatric rehabilitation clinic. Design and methods: This is a correlational cross-sectional study. Parents of patients who attend to utilize pediatric rehabilitation outpatient clinics of a tertiary center on a regular basis were invited to participate. All participants filled in the Zarit Caregiver Burden (ZCB) scale, Family Resilience scale (FRS) and Nottingham Health Profile (NHP). Results: A total of 107 patient and caregiver dyads were included. Fifty-five (51%) patients had cerebral palsy, 10 (9%) had spina bifida and 42 (39%) had other neurodevelopmental disorders. Eighty-one (75%) of the caregivers were mothers. There was a significant difference in the caregiver burden between ambulatory children (Mean ZCB score 30.11 +/- 13.56) and non-ambulatory patients (Mean ZCB score 37.22 +/- 13.91) (p = .01). There were moderate negative correlations between caregiver burden and FRS commitment to life and FRS self-sufficiency subscales. Caregiver burden significantly positively correlated with all NHP domains. Conclusions: Caregiver burden is significantly higher in parents of non-ambulatory children when compared to ambulatory children in the pediatric rehabilitation setting. Caregiver burden and resilience correlated on moderate levels, but the factors influencing them are still unclear. Practice implications: Healthcare and social support should be given to all caregivers in pediatric rehabilitation setting, but more so to the caregivers of non-ambulatory patients. (C) 2019 Elsevier Inc. All rights reserved

Does stabilizing input pressure orthosis vest, lycra-based compression orthosis, improve trunk posture and prevent hip lateralization in children with cerebral palsy?

Objectives: This study aims to investigate whether the use of a lycra-based compression orthosis known as stabilizing input pressure orthosis (SPIO) vest improves trunk posture and hip lateralization in children with cerebral palsy (CP) and to compare the effects of two-and six-hours daily wear of the orthosis. Patients and methods: Between December 2013 and July 2015, a total of 24 children with CP (5 boys, 19 girls; mean age 61.1 months; range 35 to 105 months) with impaired trunk control were included in this single-blind, randomized-controlled study. All were randomized to either of the three groups as the control group (received only conventional exercise therapy), the SPIO 2-hour group (worn orthosis two hours during therapy), and the SPIO 6-hour group (worn orthosis four hours in addition to two hours of wear during therapy). The Sitting Assessment Scale (SAS), Cobb angle, kyphotic angle, and Migration Index were used to evaluate the trunk posture and hip lateralization before treatment and at six months after treatment. Results: The SAS scores improved compared to baseline in all groups. The Cobb angle and kyphotic angle showed a significant decrease at six months after treatment only in the SPIO groups, while intra-group analysis of the Migration Index did not show a statistically significant difference. Changes in the radiographic assessments were similar among the groups, except for the kyphotic angles. The kyphotic angle showed less change in the control group. Comparison of the SPIO groups showed no significant differences in terms of the variables assessed. Conclusion: The SPIO vest improves the kyphotic posture, but not scoliosis and hip lateralization in children with CP with impaired trunk control when used in combination with the conventional therapy. Using the SPIO vest for two and six hours also yields similar outcomes

Function in unaffected arms of children with obstetric brachial plexus palsy

Objective: The objective is to compare the fine and gross motor function of unaffected arms of children with obstetric brachial plexus palsy (OBBP) with typically developing children's dominant upper extremities. Methods: Fifty-three patients with OBBP and fifty-one typically developing children between the age of 4 and 13 were included in the study. For gross motor function evaluation in the upper extremity box-block test (BBT), for fine motor skill nine-hole peg (9HP) test was used. For grasp and pinch strength measurements, a Jamar dynamometer is used. Results: The patient group performed significantly worse in 9HP and BBT tests. When further divided into age groups, 4–8 age patient group performed significantly worse in 9HP and BBT tests, while there were no differences in children in the 9–13 age group. Conclusions: The fine and gross motor functions of the unaffected arms of children with OBPP are significantly worse in children between the ages of four and eight but this deficit improves with age, and possibly with ongoing therapy. © 2018 European Paediatric Neurology Societ