Patient reported outcome measures in rare diseases: A narrative review

Orphanet Journal of Rare Diseases

Volumn 13, Issue 1, 2018, Pages

  Slade, Anita ^a,d   Isa, Fatima ^e   Kyte, Derek ^a   Pankhurst, Tanya ^a,b   Kerecuk, Larissa ^a,c   Ferguson, James ^a,b   Lipkin, Graham ^a,b   Calvert, Melanie ^a  

^a UNIVERSITY OF BIRMINGHAM   (United Kingdom)

^b UNIVERSITY HOSPITALS BIRMINGHAM NHS FOUNDATION TRUST   (United Kingdom)

^c BIRMINGHAM WOMEN S HOSPITAL   (United Kingdom)

^d Birmingham Women's Hospital NHS Foundation Trust   (United Kingdom)

^e PUBLIC HEALTH ENGLAND   (United Kingdom)

Author keywords

Outcome assessments; Patient reported outcome measures; Quality of life; Rare diseases; Rare disorders

Indexed keywords

CLINICAL PRACTICE; COMPUTERIZED ADAPTIVE TESTING; DISEASE COURSE; HEALTH CARE COST; HEALTH CARE UTILIZATION; HEALTH STATUS; HUMAN; INTERVIEW; PATIENT CARE; PATIENT-REPORTED OUTCOME; PSYCHOMETRY; QUALITATIVE RESEARCH; QUALITY OF LIFE; RARE DISEASE; REVIEW;

HUMANS; PATIENT REPORTED OUTCOME MEASURES; QUALITY OF LIFE; RARE DISEASES;

EID: 85045930879     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-018-0810-x     Document Type: Review

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