The aim of this study was to assess the expectations of adolescents with chronic disorders with regard to transition from pediatric to adult health care and to compare them with the expectations of their parents. A cross-sectional study was carried out including 283 adolescents with chronic disorders, aged 14-25 years (median age, 16.0 years), and not yet transferred to adult health care, and their 318 parents from two university children's hospitals. The majority of adolescents and parents (64%/70%) perceived the ages of 18-19 years and older as the best time to transfer to adult health care. Chronological age and feeling too old to see a pediatrician were reported as the most important decision factors for the transfer while the severity of the disease was not considered important. The most relevant barriers were feeling at ease with the pediatrician (45%/38%), anxiety (20%/24%), and lack of information about the adult specialist and health care (18%/27%). Of the 51% of adolescents with whom the pediatric specialist had spoken about the transfer, 53% of adolescents and 69% of parents preferred a joint transfer meeting with the pediatric and adult specialist, and 24% of these adolescents declared that their health professional had offered this option. In summary, the age preference for adolescents with chronic disorders and their parents to transfer to adult health care was higher than the upper age limits for admission to pediatric health care in many European countries. Anxiety and a lack of information of both adolescents and their parents were among the most important barriers for a smooth and timely transfer according to adolescents and parents. Abstract The aim of this study was to assess the expectations of adolescents with chronic disorders with regard to transition from pediatric to adult health care and to compare them with the expectations of their parents. A cross-sectional study was carried out including 283 adolescents with chronic disorders, aged 14-25 years (median age, 16.0 years), and not yet transferred to adult health care, and their 318 parents from two university children's hospitals. The majority of adolescents and parents (64%/70%) perceived the ages of 18-19 years and older as the best time to transfer to adult health care. Chronological age and feeling too old to see a pediatrician were reported as the most important decision factors for the transfer while the severity of the disease was not considered important. The most relevant barriers were feeling at ease with the pediatrician (45%/38%), anxiety (20%/24%), and lack of information about the adult specialist and health care (18%/ 27%). Of the 51% of adolescents with whom the pediatric specialist had spoken about the transfer, 53% of adolescents and 69% of parents preferred a joint transfer meeting with the pediatric and adult specialist, and 24% of these adolescents declared that their health professional had offered this option. In summary, the age preference for adolescents with chronic disorders and their parents to tra...

Better transition planning through the provision of regular and more detailed information about adult health-care providers and the transition process could reduce anxiety and contribute to a more positive attitude to overcome perceived barriers to transition from young people's perspective. Young people's preferences about transferring to adult health care provide a challenge to those children's hospitals that transfer to adult health care at a younger age.

Current asthma-speci®c quality of life questionnaires have major conceptual and methodological de®ciencies for use in adolescents. The aim of this study was to develop and validate the "Adolescent Asthma Quality of Life Questionnaire (AAQOL)", speci®cally developed for adolescents with asthma.One-hundred and eleven adolescents with frequent-episodic or persistent asthma aged 12±17 yrs were recruited from three tertiary paediatric asthma clinics. The standardized multi-step method consisted of: 1) item selection including semistructured interviews (n=14); 2) item reduction and validation (n=66); and 3) assessment of reproducibility (n=31). Item reduction was performed applying the clinical impact method.The 32 item AAQOL covers six domains: symptoms, medication, physical activities, emotion, social interaction and positive effects. There was high internal consistency for the six domains (a=0.70±0.90) and for the total score (a=0.93). Test-retest reliability was high for all domain scores (r=0.76±0.85) and the total score (r=0.90), indicating high reproducibility of the AAQOL. There was high correlation with the paediatric Asthma Quality of Life Questionnaire (r=0.81) which focuses primarily on symptoms and emotional well-being. There was weak to moderate correlation with clinical parameters of asthma severity (r=0.25±0.65).The 32-item Adolescent Asthma Quality of Life Questionnaire is a valid, developmentally age-appropriate and dimensionally comprehensive asthma-speci®c quality of life measure for use in adolescents.

Health-related quality of life has become an essential part of health outcome measurement in chronic disorders. However, it is only recently that health professionals have focused on quality-of-life assessment in children and adolescents. Several generic, as well as the asthma-specific quality-of-life instruments specifically designed for use in children and adolescents are reviewed in this article with particular regard to the conceptual and methodological features of the measures and their applicability in clinical studies. The recently published Child Health Questionnaire is a useful generic instrument to comprehensively assess quality of life, in particular when comparing young people with different chronic disorders. The Pediatric Asthma Quality-of-life Questionnaire has shown responsiveness to change over time, but it lacks age-specificity with regard to psychosocial issues and comprehensiveness of quality-of-life assessment. In contrast, the Childhood Asthma Questionnaire provides three different versions for different target ages. However, its generic part is not reflective of the respondent's health status. The other asthma-specific instruments have major conceptual deficiencies when used as a single measure for quality-of-life assessment. In the absence of a single ideal instrument, the use of batteries of quality-of-life instruments is therefore recommended and further research is required to identify the impact that age and developmental status have on quality-of-life assessment.

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