Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays

Orphanet Journal of Rare Diseases

Volumn 12, Issue 1, 2017, Pages

  Zurynski, Yvonne ^a,b   Deverell, Marie ^a,b   Dalkeith, Troy ^a,c   Johnson, Sandra ^b   Christodoulou, John ^b,c,d,e   Leonard, Helen ^f   Elliott, Elizabeth J ^a,b  

^a CHILDREN S HOSPITAL AT WESTMEAD   (Australia)

^b UNIVERSITY OF SYDNEY   (Australia)

^c Sydney Children s Hospitals Network   (Australia)

^d ROYAL CHILDREN'S HOSPITAL   (Australia)

^e UNIVERSITY OF MELBOURNE   (Australia)

^f UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

Author keywords

Australian; Child; Diagnosis; Diagnostic delays; Experiences; Families; Rare diseases

Indexed keywords

ADOLESCENT; ADULT; ANXIETY; ARTICLE; AUSTRALIAN; CHILD; DELAYED DIAGNOSIS; DIAGNOSTIC ERROR; DISEASE COURSE; EMPATHY; FAMILY PLANNING; FEMALE; FRUSTRATION; GENETIC COUNSELING; HEALTH CARE ACCESS; HEALTH LITERACY; HUMAN; INBORN ERROR OF METABOLISM; INFANT; MAJOR CLINICAL STUDY; MALE; PROFESSIONAL KNOWLEDGE; PSYCHOSOCIAL CARE; RARE DISEASE; REPRODUCTIVE HEALTH; SATISFACTION; SCREENING; STRESS; TELEDIAGNOSIS; THERAPY DELAY; AUSTRALIA; COPING BEHAVIOR; NEWBORN; PRESCHOOL CHILD;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; AUSTRALIA; CHILD; CHILD, PRESCHOOL; DELAYED DIAGNOSIS; FEMALE; HUMANS; INFANT; INFANT, NEWBORN; MALE; RARE DISEASES;

EID: 85018477470     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-017-0622-4     Document Type: Article

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