Conceptualizing a quality of life framework for girls with Rett syndrome using qualitative methods

American Journal of Medical Genetics, Part A

Volumn 170, Issue 3, 2016, Pages 645-653

  Epstein, Amy ^a   Leonard, Helen ^a   Davis, Elise ^b   Williams, Katrina ^c   Reddihough, Dinah ^c   Murphy, Nada ^a   Whitehouse, Andrew ^a   Downs, Jenny ^a,d  

^a UNIVERSITY OF WESTERN AUSTRALIA   (Australia)

^b UNIVERSITY OF MELBOURNE   (Australia)

^c ROYAL CHILDREN'S HOSPITAL   (Australia)

^d CURTIN UNIVERSITY   (Australia)

Author keywords

Disability; Parent proxy report; Qualitative research; Quality of life; Rett syndrome

Indexed keywords

METHYL CPG BINDING PROTEIN 2; MECP2 PROTEIN, HUMAN;

ADOLESCENT; ADULT; ARTICLE; CHILD; CHILD BEHAVIOR; CHILD CARE; COMMUNICATION SKILL; CONTROLLED STUDY; DAILY LIFE ACTIVITY; FEMALE; GENE; GENE MUTATION; HUMAN; MAJOR CLINICAL STUDY; MECP2 GENE; PAIN; PATIENT COMFORT; PATIENT MOBILITY; PHYSICAL CAPACITY; PRIORITY JOURNAL; PSYCHOLOGICAL WELL BEING; QUALITATIVE RESEARCH; QUALITY OF LIFE; RETT SYNDROME; SCHOOL CHILD; SEMI STRUCTURED INTERVIEW; SOCIAL INTERACTION; TELEPHONE INTERVIEW; AUSTRALIA; FACTUAL DATABASE; GENE EXPRESSION; GENETICS; HEALTH STATUS; INTERPERSONAL COMMUNICATION; MUTATION; PAIN MEASUREMENT; PATHOPHYSIOLOGY; PHYSIOLOGY; PSYCHOLOGY; QUESTIONNAIRE; WALKING;

ACTIVITIES OF DAILY LIVING; ADOLESCENT; AUSTRALIA; CHILD; COMMUNICATION; DATABASES, FACTUAL; FEMALE; GENE EXPRESSION; HEALTH STATUS; HUMANS; METHYL-CPG-BINDING PROTEIN 2; MUTATION; PAIN; PAIN MEASUREMENT; QUALITY OF LIFE; RETT SYNDROME; SURVEYS AND QUESTIONNAIRES; WALKING;

EID: 84959490600     PISSN: 15524825     EISSN: 15524833     Source Type: Journal    
DOI: 10.1002/ajmg.a.37500     Document Type: Article

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