Janice Abbott

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BACKGROUND Health related quality of life (HRQoL) measurement is important in determining the impact of disease on daily functioning and subsequently informing interventions. In cystic fibrosis (CF) generic HRQoL measures have been employed but these may not be sufficiently specific. The aim of the current work was to develop and validate a disease specific(More)
OBJECTIVE To develop and validate a disease-specific health-related quality of life (HRQOL) instrument for adults with systemic lupus erythematosus (SLE). METHODS The work consisted of 6 stages. Stage 1 included item generation for questionnaire content from semistructured interviews with SLE patients. In stage 2 item selection for the draft questionnaire(More)
BACKGROUND Clinical and demographic variables are poor predictors of treatment adherence. This study therefore examined the relationships between the patients' perception of their cystic fibrosis and their reported adherence to physiotherapy, exercise, pancreatic enzyme and vitamin therapies. METHODS Sixty adults with cystic fibrosis completed the Health(More)
BACKGROUND There is little information on the costs of running an adult cystic fibrosis centre. The aim of this study was to provide detailed costs to assist funding and planning for these patients. METHODS The cost of a regional adult cystic fibrosis centre serving 119 cystic fibrosis patients, categorised according to four treatment regimens, was(More)
BACKGROUND The study comprised three interrelated aims: (1) to ascertain (a) patient compliance with physiotherapy, exercise, enzyme and vitamin regimens, (b) how compliance was perceived by patients, and (c) the reasons for poor compliance (2) to identify demographic and clinical variables associated with compliance; and (3) to determine how accurately(More)
BACKGROUND Individuals with chronic diseases and parent caregivers are at increased risk for symptoms of depression and anxiety. Prevalence of psychological symptoms was evaluated in adolescents and adults with cystic fibrosis (CF) and parent caregivers across nine countries. METHODS Patients with CF, ages 12 years and older, and caregivers of children(More)
BACKGROUND Government health care policy encourages a culture of patient choice and involvement in decision making, although the complexities and challenges involved in fully engaging patients in clinical decision making can be perceived as barriers to effective communication between the professional and patient. The present study aimed to explore the(More)
PURPOSE How individuals cope with aspects of cystic fibrosis (CF) has the potential to influence their self management and the course of their disease. To evaluate how individuals cope with CF, a disease specific coping scale was developed and validated. A second objective of the work was to examine the relationship between coping styles and treatment(More)
BACKGROUND The provision of home enteral tube feeding in adults has increased in the UK. This study explored how percutaneous endoscopic gastrostomy (PEG) feeding impacts on daily lives of adult patients, from the patients' and carers' perspectives. METHODS A semi-structured interview approach was developed to obtain participants' views of the impact of(More)
The IMPACT questionnaire was developed in Canada to measure quality of life in children with inflammatory bowel disease (IBD). In the present study, 20 children with IBD completed 2 versions of the IMPACT questionnaire with a Likert scale or visual analog scale (VAS), 5 of whom expressed problems with language or phrasing. Difficult words included(More)