Evaluation of quality of life and parental attitudes in patients who underwent atrial septal defect closure in childhood.

OBJECTIVE: In this study, we aimed to evaluate quality of life and parental attitudes in children who underwent an atrial septal defect closure procedure with a transcatheter or surgical method in childhood and whether they continued their lives with similar activities to their healthy peers by comparing the two groups. METHODS: Patient forms to define sociodemographic and clinical features, the Questionnaire for Measuring Health-Related Quality of Life in Children and Adolescents (KINDL) to measure the quality of life of children, and the Parent-Child Relationship Test (Parental Attitude Research Instrument) to measure parental attitudes were used. RESULTS: The groups were similar in terms of age and sex. The mean quality of life scale scores were high in all groups, and there was no statistically significant difference between the scores. Parents of the patients who underwent closure received higher scores from the demographic attitudes and recognition of quality subdimension compared to the parents of the healthy group. CONCLUSIONS: The quality of life of children with atrial septal defect closure was found to be similar to their healthy peers. Additionally, the effects of surgical or percutaneous closure of atrial septal defect on quality of life are similar. Children with atrial septal defect closure perceive their health status as well as their healthy peers, and this perception does not cause any difference in the attitudes and behaviours of families.

Utility of continuous performance test (MOXO-CPT) in children with pre-dialysis chronic kidney disease, dialysis and kidney transplantation.

BACKGROUND: Children with chronic kidney disease and on kidney replacement therapy may have neurocognitive and psychosocial disorders. Although kidney transplantation improves quality of life, psychological problems may exist in children who undergo kidney transplantation. Herein, we aimed to investigate attention-deficit hyperactivity disorder-like symptoms with MOXO-continuous performance test in children with pre-dialysis chronic kidney disease, dialysis and kidney transplantation. METHODS: The MOXO-continuous performance test measures four domains of attention-deficit hyperactivity disorder-like symptoms, including attention, timeliness, hyperactivity and impulsivity. Patients with at least three scores < - 1.5 standard deviations were considered as positive to MOXO-continuous performance test. Test scores of the pre-dialysis chronic kidney disease, dialysis (divided into peritoneal dialysis and hemodialysis subgroups) and kidney transplantation groups were compared. Correlations of test scores with the patient's clinical and laboratory characteristics and effects of hospitalizations and schooling were assessed. RESULTS: Seventy-two patients aged 13.3 ± 3.4 years (23 with kidney transplantation, 23 on dialysis and 26 with pre-dialysis chronic kidney disease) were evaluated. Overall MOXO-continuous performance test positivity was 29%. No differences were detected between the three groups concerning total or z scores. Attention and timeliness z scores were significantly higher in females (p = 0.004 and p = 0.008, respectively). Age was positively correlated to attention and timeliness total scores (p = 0.000, r = 0.445 and p = 0.004, r = 0.243, respectively), and inversely correlated to hyperactivity total scores (p = 0.000, r = - 0.415). CONCLUSIONS: Prevalence of attention-deficit hyperactivity disorder-like symptoms in the study population was much higher than that of pediatric attention-deficit hyperactivity disorder. We believe that the MOXO-continuous performance test is a valid supportive measure for evaluation of attention-deficit hyperactivity disorder diagnosis in children with various stages of chronic kidney disease or on kidney replacement therapy.

Evaluation of caregiver burden and coping strategies in parents of paediatric familial Mediterranean fever patients in relation to illness severity, therapy and health-related quality of life.

PURPOSE: The study aimed to determine the caregiver burden and coping strategies in caregivers of familial Mediterranean fever (FMF) patients in relation to illness severity, therapy and health-related quality of life (HRQoL). METHODS: The study included 171 paediatric FMF patients and their caregivers (parents). The caregivers were asked to complete a socio-demographic form, the Zarit caregiver burden interview (ZCBI) and the Brief COPE. The patients and their caregivers were asked to complete the KINDer Lebensqualitätsfragebogen questionnaire (self-report and proxy report, respectively) for assessing HRQoL. The patients were categorised according to their disease activity (mild, moderate or severe) and the presence or absence of anti-IL-1 therapy. RESULTS: The mean ZCBI score of the caregivers was 44.7 ± 13.5. ZCBI and COPE scores did not differ significantly between the caregivers of FMF patients receiving and not receiving anti-IL-1 therapy. However, dysfunctional COPE (p = 0.039) and ZCBI (p = 0.021) scores showed a significant difference between the caregivers in relation to patient's disease severity. ZCBI scores were positively correlated with dysfunctional coping (p = 0.01). Self-reported HRQoL disease module scores were lower for the patients who received anti-IL-1 therapy than for those did not (p = 0.009). Proxy-reported (p < 0.001) and self-reported (p = 0.043) HRQoL disease module scores were lower for the patients with severe disease activity. CONCLUSIONS: As the caregiver burden increases, parents tend to use a dysfunctional coping strategy. Good control of disease activity with administration of medical therapy can reduce the disease severity, thereby decrease the caregiver burden, and secondly help to reduce the usage of dysfunctional coping in caregivers.

Parental knowledge about familial Mediterranean fever: a cross-sectional study.

BACKGROUND: The life-long course, long-term complications, necessity for regular treatment, and potential side effects of the medications must be well understood by parents of pediatric familial Mediterranean fever (FMF) patients. The aim of this study was to assess parental knowledge and to investigate how parents obtained scientific information about FMF. METHODS: One hundred and seventy-one pediatric FMF patients and their parents were enrolled in this crosssectional study. Three-part questionnaires, including forms on socio-demographics, knowledge and perceptions of FMF, and how to get information about FMF, were administered to parents. RESULTS: In the analysis of the knowledge questions, 90.1% of parents were aware of colchicine as an effective drug for FMF, but only 39.2% of them were aware that there is no vital risk during FMF attacks. Caregivers preferred to obtain information from physicians (98.8%), websites (47.9%), seminars (3.5%), and books (1.7%). The knowledge scores of parents were significantly higher among those whose children were using antiinterleukin- 1 therapy in addition to colchicine relative to those on colchicine alone (p = 0.04). There was a positive correlation between knowledge level and parental educational status (p = 0.0001). CONCLUSIONS: Knowledge scores among parents of pediatric FMF patients are unsatisfactory. The parents whose children have a severe disease course and a need for anti-interleukin-1 therapy are more knowledgeable. For parents, continuing education programs including books, seminars and web-sites giving information about the course, prognosis, complications and treatments of FMF should be employed immediately after the diagnosis and thereafter.

Effect of Telehealth System on Glycemic Control in Children and Adolescents with Type 1 Diabetes

Objective: A close diabetes team-patient relationship is required for establishing satisfactory metabolic control. The purpose of this study was to investigate the effect of a telehealth system on diabetes control. Methods: The study was carried out between June 2015 and January 2016 at the Gazi University Faculty of Medicine, Pediatric Endocrinology Department. The telehealth system was developed by the diabetes team. The demographic characteristics, frequency of use and hemoglobin A1c (HbA1c) changes of type 1 diabetic (T1DM) patients using this communication network were analysed. Results: Eighty two patients [43 (52.4%) females, mean (±standard deviation) age 10.89±4 years] used the telehealth system. Fourteen (17.1%) of the cases were on pump therapy and 59 (72.0%) were counting carbohydrates. The individuals with diabetes or their families preferred WhatsApp communication. Whatsapp provided a means for instant messaging in most instances (57.3%), contact with diabetes education nurse (32.9%) and consultation with the diabetes team about insulin doses and blood glucose regulation (42.7%). HbA1c values after six months were significantly lower in patients/parents calling frequently (p<0.001) compared with HbA1c values recorded at the beginning of the study. Conclusion: Increase in frequency of counselling by the diabetes team led to improved blood glucose control in T1DM patients. A telehealth system is useful for early detection of the need for changes in treatment and for intervention. It also promoted better self care.

"The effects of family-centered physiotherapy on the cognitive and motor performance in premature infants".

OBJECTIVE: The aim of this study is to investigate the effects of family centered physiotherapy according to the neurodevelopmental treatment (NDT) principles on mental and motor performance in premature infants. METHODS: A total of 156 infant, ≥24/36 week+6days gestational age included in the study. All the infants were diagnosed by a child neurologist and referred to psychology and physiotherapy department for their neurodevelopmental assessment and treatment. Bayley Scale of Infant II (BSI-II) was used for neurodevelopmental assessment and Alberta Infant Motor Scale (AIMS) was used for assessing their motor performance. Seventy-eight of the infants were in the study group and 76 were recruited as age matched controls according to the classification of their gestational age. Family centered physiotherapy according to the neurodevelopmental treatment principles was used as an intervention and all the mothers are trained accordingly. RESULTS: Cognitive Development Scores and Motor Development Scores of Bayley II were recorded for the 3., 6., 9., and 12 months respectively. Between the 3. and 12. month of gestational age, within-groups measurements in both Cognitive Development Scores (p<0.001) and Motor Development Scores (p<0.001) were significantly increased. However, the improvements in both Cognitive Development Scores (p=0.059) and Motor Development Scores (p=0.334) between the groups was not different. CONCLUSION: Family centered physiotherapy with NDT principles may not be enough to improve motor and cognitive performance in preterm infants at the first year of age. For supporting the motor and cognitive development of the preterm infants other intervention modalities also should be considered.