The future of cystic fibrosis care: a global perspective
Executive summary The past six decades have seen remarkable improvements in health
outcomes for people with cystic fibrosis, which was once a fatal disease of infants and young …
outcomes for people with cystic fibrosis, which was once a fatal disease of infants and young …
[HTML][HTML] Unique medical issues in adult patients with mucopolysaccharidoses
J Mitchell, KI Berger, A Borgo, EA Braunlin… - European journal of …, 2016 - Elsevier
The mucopolysaccharidoses are a group of inherited metabolic diseases caused by
deficiencies in enzymes involved in the sequential degradation of glycosaminoglycans …
deficiencies in enzymes involved in the sequential degradation of glycosaminoglycans …
Young adults' experiences and satisfaction with the transfer of care
AL van Staa, JNT Sattoe - Journal of Adolescent Health, 2014 - Elsevier
Purpose Transition of care of adolescents with chronic conditions is a critical area for
clinicians. Patient-reported outcomes may provide important information on the quality of …
clinicians. Patient-reported outcomes may provide important information on the quality of …
The health care transition of youth with liver disease into the adult health system: position paper from ESPGHAN and EASL
Background: Medical advances have dramatically improved the long-term prognosis of
children and adolescents with once-fatal hepatobiliary diseases. However, there is no …
children and adolescents with once-fatal hepatobiliary diseases. However, there is no …
Management aspects of congenital adrenal hyperplasia during adolescence and transition to adult care
C Balagamage, A Arshad, YS Elhassan… - Clinical …, 2023 - Wiley Online Library
The adolescent period is characterised by fundamental hormonal changes, which affect sex
steroid production, cortisol metabolism and insulin sensitivity. These physiological changes …
steroid production, cortisol metabolism and insulin sensitivity. These physiological changes …
[HTML][HTML] Young adults' needs when seeking first-line healthcare: A grounded theory design
L Viktorsson, E Törnvall, M Falk, I Wåhlin… - Plos one, 2022 - journals.plos.org
Background Healthcare outpatient visits have increased in recent years, and young adults
are often given as an explanatory factor for many avoidable visits. Objective The objective of …
are often given as an explanatory factor for many avoidable visits. Objective The objective of …
[HTML][HTML] Young adults as users of adult healthcare: experiences of young adults with complex or life-limiting conditions
B Beresford, L Stuttard - Clinical Medicine, 2014 - ncbi.nlm.nih.gov
Awareness is growing that young adults may have distinctive experiences of adult
healthcare and that their needs may differ from those of other adult users. In addition, the …
healthcare and that their needs may differ from those of other adult users. In addition, the …
Transition from children's to adult services for young adults with life-limiting conditions: a realist review of the literature
H Kerr, J Price, H Nicholl, P O'Halloran - International Journal of Nursing …, 2017 - Elsevier
Background Improvements in care and treatment have led to more young adults with life-
limiting conditions living beyond childhood, which means they must make the transition from …
limiting conditions living beyond childhood, which means they must make the transition from …
Health‐related quality of life of young people with long‐term illnesses before and after transfer from child to adult healthcare
AE While, E Heery, AM Sheehan… - Child: care, health and …, 2017 - Wiley Online Library
Background The numbers of children with long‐term illnesses surviving into adulthood and
transferring from child to adult services has increased dramatically in the last 30 years. This …
transferring from child to adult services has increased dramatically in the last 30 years. This …
Challenges Waiting for an Adult with DSD
HF Nowotny, N Reisch - Hormone Research in Paediatrics, 2023 - karger.com
Background: Disorders/differences of sex development (DSD) comprise a heterogeneous
group of inborn conditions where the individual's sex chromosomes, gonads, and/or …
group of inborn conditions where the individual's sex chromosomes, gonads, and/or …