Berna Eren Fidanci

EULAR / PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases

To develop standards and recommendations for transitional care for young people (YP) with juvenile-onset rheumatic and musculoskeletal diseases (jRMD). The consensus process involved the following: (1) establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology; (2) a systematic review of published models of transitional care in jRMDs, potential standards and recommendations, strategies for implementation and tools to evaluate services and outcomes; (3) setting the framework, developing the process map and generating a first draft of standards and recommendations; (4) further iteration of recommendations; (5) establishing consensus recommendations with Delphi methodology and (6) establishing standards and quality indicators. The final consensus derived 12 specific recommendations for YP with jRMD focused on transitional care. These included: high-quality, multidisciplinary care starting in early adolescence; the integral role of a transition co-ordinator; transition policies and protocols; efficient communications; transfer documentation; an open electronic-based platform to access resources; appropriate training for paediatric and adult healthcare teams; secure funding to continue treatments and services into adult rheumatology and the need for increased evidence to inform best practice. These consensus-based recommendations inform strategies to reach optimal outcomes in transitional care for YP with jRMD based on available evidence and expert opinion. They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks.

Validity and reliability of medication adherence scale in FMF (adult version)

MASIF (Medication Adherence Scale in FMF) is an instrument designed to measure adherence to treatment in children with Familial Mediterranean Fever (FMF). We have developed this scale for children with FMF and found valid and reliable.

''Ebeveyn-Çocuk Etkileşim Modeli'' Doğrultusunda Hemşirelik Yaklaşımları

ÖZET Ebeveyn-bebek arasındaki etkileşim; doğum öncesi dönemde başlayan, fetüsün hareketleri ile gittikçe artan, doğum ile doruğa çıkan kaliteli ve karşılıklı bir ilişkidir. Bu etkileşim; bebeklikte anne/baba ya da bakım verenlerin bebek ile ten veya ses-göz teması gibi davranışlarına bebeğin olumlu/olumsuz tepkiler vermesi ile gelişir ve ebeveynler ile bebek arasında sağlıklı bir ilişkinin gelişmesine yardım eder. Ebeveynler ile yenidoğan arasında kurulan karşılıklı ilişki temel güven duygusunun oluşmasına ve bebeğin sağlıklı bir kişilik geliştirmesine imkân sağlamaktadır. Annenin bebeği ile yakınlık kurmaya en çok istekli olduğu ve pozitif anne bebek ilişkisinin başlatılması için en uygun dönem özellikle doğum sonrası dönemdir. Bu dönemde, ebeveynbebek arasında sevgi bağı ve etkileşiminin başlatılması, sürdürülmesi, bebeğin ebeveynlere verdiği ipuçlarının farkedilmesi ve doğru değerlendirilmesi, destekleyici bir çevrenin oluşturulması ve stresin azaltılmasında ebeveynler ve bebekle sık görüşen yenidoğan hemşirelerine önemli görevler düşmektedir. Kathryn E. Barnard;bakım veren kişinin bebek üzerinde etkisi olduğu kadar, bebeğin de bakım veren kişi üzerindeki etkisini vurgulamış ve ebeveyn-bebek etkileşimini yenidoğanın dünyayı deneyimlemesinin ilk yolu olarak tanımlamıştır. Barnard’a göre; bu etkileşimde ebeveynler ve kendine özgü mizacı ile yenidoğan karmaşık bir sistemin parçalarıdır. Bu çalışmanın amacı Kathryn Barnard’ın “ebeveyn ve çocuk etkileşim modeli” doğrultusunda yenidoğan ve ebeveynleri arasındaki etkileşime yönelik hemşirelik bakım uygulamalarını açıklamaktır.

Validation of Transition Readiness Assessment Questionaire in Turkish Adolescents with Diabetes

Background: Today, more than 90% of adolescents with chronic conditions survive into adulthood and move from pediatric care to adult care for the management of their chronic illness. It is important to grant autonomy and ensure that adolescents/young adults are ready to use the adult health care system prior to the transfer of care. However, the lack of a transition readiness assessment tool that is validated, patient-centered, and appropriate to developmental differences in pediatric care is a major obstacle for the transition of care from pediatric services to adult services. Aims: This study examined the validity and reliability of the Turkish version of the Transition Readiness Assessment Questionnaire, which assesses the readiness for transition from pediatric to adult health care for adolescents/young adults with diabetes mellitus. Study Design: Methodological study. Methods: Participants were 109 adolescents/young adults with type 1 diabetes mellitus aged 14-21 years. After permission was obtained to adapt the Transition Readiness Assessment Questionnaire, the Turkish Transition Readiness Assessment Questionnaire and self-care scale were administered to participants through face-to-face interviews at two pediatric endocrinology clinics. Validity was evaluated by exploratory and confirmatory factor analysis and content-scope validity assessment; reliability was evaluated by item-total score correlation and continuity methods. Internal reliability was assessed by Cronbach’s alpha coefficient and criterion validity assessment. Results: The item analysis, exploratory factor analysis, and confirmatory factor analysis identified five basic dimensions, with high internal consistency (0.89-0.75). The ratio χ2/df and other conformity indices were a good fit to the data. The correlation coefficient in the analyses of test-retest scores was 0.86 for the total scale (p<0.05), and the Cronbach’s alpha coefficient was 0.88 for overall scale. Conclusion: The Turkish Transition Readiness Assessment Questionnaire is a valid and reliable measure of the transition readiness of adolescents/young adults with diabetes mellitus in Turkey. The Transition Readiness Assessment Questionnaire assesses the self-management abilities and health care transition knowledge of adolescents/young adults with diabetes mellitus who need special health care. It can also serve as a guide for health care professionals in detecting the educational fields that are necessary for acquiring self-management and self-care abilities.

0-6 Yaş Arası Çocuğa Sahip Annelerin Ateş Düşürücü İlaç Kullanımına İlişkin Bilgi ve Tutumlarının Belirlenmesi

Amac: Calisma, 0-6 yas arasi cocuga sahip annelerin ates dusurucu ilac kullanimina iliskin bilgi ve tutumlarinin belirlenmesi amaciyla yapildi. Yontem: Tanimlayici tipteki bu arastirmanin orneklemini, GATF Cocuk Sagligi ve Hastaliklari ile Cocuk Cerrahisi Polikliniklerine Şubat-Mart 2014 tarihleri arasinda basvuran ve 0-6 yas cocugu sahip olan 156 anne olusturdu. Veriler, ates dusurucu ilac kullanimini ile ilgili 20 sorudan olusan veri toplama formu ile elde edildi. Verileri degerlendirmek icin “SPSS 15.0 for Windows” programi kullanildi. Istatistiksel karsilastirmalar icin ki-kare testi kullanildi; p<0.05 degeri istatistiksel olarak anlamli kabul edildi Bulgular: Annelerin yas ortalamasi 34±6.5’dir. Annelerin %66.7’si 11 yil uzeri egitime sahiptir. Annelerin %92.3’u atesi degerlendirmek icin termometre kullanmaktadir ve %88.5’i hekim recetesi olmadan ates dusurucu ilac kullanmaktadir. Ates dusurucu ilac kullaniminin %83,3’unu parasetamol, %59’unu ibuprofen olusturmaktadir. Annelerin egitim duzeyinin 11 yil uzeri olmasi ile ates dusurucu ilacin yan etkisini bilme durumu arasinda istatistiksel olarak anlamli bir farklilik vardir (p=0.000). Sonuc: Arastirma sonucunda, 0-6 yas grubunda cocuga sahip annelerin, ates dusurucu ilac kullanimina yonelik bilgi eksikliginin oldugu bulundu. Anahtar Kelimeler: Anne, ates dusurucu ilac kullanimi, cocuk.

Validity and reliability of medication adherence scale in FMF

Objective The optimal level of adherence necessary to achieve acceptable disease and quality-of-life outcomes for patients is not known. In order to identify these optimal levels, we need reliable and valid measures of adherence. Medication Adherence Scale in FMF (MASIF) is an instrument designed to measure adherence to treatment in children with Familial Mediterranean Fever (FMF). We have developed this scale for children with FMF and found valid and reliable. In this study, it was aimed to assess the validity and reliability of this adherence scale for medical treatment in adult FMF patients.

Parents' Expectations and Satisfaction on Pediatrics Clinic

Parents whose child is in hospital are generally in anxiety because of the foreign environment and child’s disease. This condition of uncertainty also makes them worried. Therefore, the expectations of parents of hospitalized children and how much of this expectation in the hospital were met must be set forth. The aim of this study; is to investigate what the expectations of parents about their childs care were, how care and treatment practices affect parents’ satisfaction and what kind of a relationship between the expectation and the satisfaction. The research was implemented during the timeframe of January-April 2008 by using face-to-face interviews with the parents of children at the age of 0-18 years in pediatrics clinic by means of two questionnaires. Parents completed one questionnaire immediately after their child’s admission and the second after hospital discharge. As a result, mothers are mostly satisfied with the approach of doctors and nurses except the expectation “caring about children’s home routines”. Supportive approach of health care personal adds a big deal to satisfy parents’ expectations. Keeping communication channels open, answering their questions and giving the best care available are respective ways to catch better standards in health care

The Relationship between Blood Pressure and Sleep Quality among Obese Adolescents Patients

Objective: To clarify the relation between blood pressure and sleep quality in obese adolescents. Methods: The study was designed and performed as descriptive study. Sleep quality questionnaire, 24hr ambulatory systemic blood pressure monitoring and anthropometric measurements were performed in both study and control groups (age range 10-18, n=22). Demographic data, Pittsburgh Sleep Quality Index and blood pressure measurements were compared. Results: No statistically meaningful association between blood pressure and sleep quality was found. Obese patients (n=30) had been found to have difficulty breathing in their sleep (p=0.001). There were no statistical differences between the obese and non-obese groups with their means of Pittsburg Sleep Quality Index (p=0.059). Conclusions: On contrary to other studies we found that sleep quality does not affect blood pressure in obese adolescents. We concluded that obese adolescents have trouble breathing in their sleep.

PO-0904 Describing The Knowledge Of Parents About Newborn Screening

Screeningis generally consider part of the routine care for newborns. Newborn screening for phenylketonuria (PKU) has been available since the early 1960s. The fist newborn screening for PKU started in Ankara in Turkey in 1986 and extended country wide in 1993. PKU rate in Turkey occurs 1 in 4000 newborns because of consanguineous marriage. Consanguineous marriage rat in Turkey is 21%. This research was planned to describe the knowledge of parents about newborn PKU screening. A questionnaire was used to gather the data. To determine the effects data were evaulated by using chi square test and percentage analysis on the SPSS 11.0 program package. The study was performed during the period of January 2005 and March 2005 in a University Hospital and 150 mothers in postpartum period were included in the research. The questionnaire was obtained by face to face technique. Results The mean age of mothers was 26.49% of mother were graduated basic school. 74.7%of mother were house wife. 68% of mothers were primipara. 47% of mothers statedthat the test was ‘a IQ test’. Sixty-four percent of mothers didn’t know how toexecute the test. 69.3% of mothers didn’t know how long to continue the test.61.3% of mothers didn’t know how to learn the results of the test. Although99.3% of newborns were seem to be physically healthy, it was stated thatpostpartum screening tests should be applied. Considering this results, inorder to inform the mothers about the obtained results, a PKU educationbrochure was prepared and given to the unit. Conclusions Nurses who understand the pathophysiology and management of PKU in pregnancycan provide the care necessary for maternal and neonatal health. Healthcare providersare responsible for informing parents about the implications of newbornscreening to improve awareness and understanding.

PO-0873 Determination Of Falling Risk For Children In An Education And Research Hospital In Turkey

Objective The aim of this study was to determinate falling risk ofchildren who have been in Gulhane Military Medical Academy Hospital. Methods The study wascaried out at department of paediatric surgery and department of pediatricsbetween February–March 2014 in Gulhane Military Medical Academy Hospital. Thepopulation of the study was consisted of 122 children. Diagnostic Falling RiskScale for Child Patients were used for data collection. Results In the study group 36.1% of patients were female and 69.9%were male. The majority of patients were <3 years of age (32.8%). Thereasons having been in hospital in hospital included pulmonary disease (18.6%),neurological or neuromuscular disorders (13.7%), and cardiac disorders (2%), complicationsof prematurity (8.8%), inguinal region deformity (3%), immunological disease (5.9%), fluid and electrolyte disorders (3.8%),poisoning (%3) and cancer (27.5). It was 57.4% staying in hospital which isrange from one to seven days. It was found that falling risks were high levelwhich is 97.5%. There wasno stastically important difference in falling risks between gender (p?0.005). Conclusion It was found high falling risk for children who have beenin our hospital.