To develop standards and recommendations for transitional care for young people (YP) with juvenileonset 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 coordinator; 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.
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.
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 child's 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.
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