Assessment of the impact of phenylketonuria and its treatment on quality of life of patients and parents from seven European countries

Orphanet Journal of Rare Diseases

Volumn 10, Issue 1, 2015, Pages

  Bosch, Annet M ^a   Burlina, Alberto ^b   Cunningham, Amy ^c   Bettiol, Esther ^d   Moreau Stucker, Flavie ^e   Koledova, Ekaterina ^f   Benmedjahed, Khadra ^g   Regnault, Antoine ^g  

^a ACADEMIC MEDICAL CENTER   (Netherlands)

^b UNIVERSITY HOSPITAL OF PADOVA   (Italy)

^c TULANE UNIVERSITY SCHOOL OF MEDICINE   (United States)

^d GENEVA UNIVERSITY HOSPITALS   (Switzerland)

^e EMD SERONO INC   (United States)

^f MAPI Institute   (France)

^g MERCK KGAA   (Germany)

Author keywords

Health related quality of life; Phenylketonuria; Questionnaires; Rare disease

Indexed keywords

PHENYLALANINE; TETRAHYDROBIOPTERIN;

ADOLESCENT; ADULT; AGE DISTRIBUTION; ANXIETY; ARTICLE; CHILD; CHILD HEALTH QUESTIONNAIRE 28 ITEM PARENT FORM; CONTROLLED STUDY; DIET SUPPLEMENTATION; DIET THERAPY; DISEASE SEVERITY; EMOTIONALITY; FEMALE; FRANCE; GERMANY; HEALTH STATUS; HUMAN; ITALY; MAJOR CLINICAL STUDY; MALE; NETHERLANDS; OBSERVATIONAL STUDY; PARENTAL BEHAVIOR; PATIENT ATTITUDE; PEDIATRIC QUALITY OF LIFE INVENTORY; PHENYLKETONURIA; PHENYLKETONURIA HEALTH RELATED QUALITY OF LIFE QUESTIONNAIRE; POPULATION RESEARCH; PREGNANCY; PROSPECTIVE STUDY; PROTEIN BLOOD LEVEL; QUALITY OF LIFE; QUALITY OF LIFE ASSESSMENT; SHORT FORM 36; SPAIN; TURKEY (REPUBLIC); UNITED KINGDOM; AGED; CLINICAL TRIAL; COGNITION DISORDERS; DIET; EUROPE; HEALTH STATUS INDICATOR; HEALTH SURVEY; MIDDLE AGED; MULTICENTER STUDY; PROCEDURES; PSYCHOLOGY; QUESTIONNAIRE; RARE DISEASE; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; ANXIETY; CHILD; COGNITION DISORDERS; DIET; EUROPE; FEMALE; HEALTH STATUS INDICATORS; HEALTH SURVEYS; HUMANS; MALE; MIDDLE AGED; PHENYLKETONURIAS; PROSPECTIVE STUDIES; QUALITY OF LIFE; RARE DISEASES; SURVEYS AND QUESTIONNAIRES; YOUNG ADULT;

EID: 84939144556     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-015-0294-x     Document Type: Article

References (44)

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