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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 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)
BACKGROUND Disease progression in cystic fibrosis (CF) is marked by deterioration across a number of physiological systems. In addition, there is evidence that females have a worse prognosis than males. The current work assesses the impact of both these factors on health related quality of life (HRQoL). METHODS Two hundred and twenty-three adolescents and(More)
OBJECTIVES To identify factors within the South Yorkshire coalfields that influence use of health services by people with angina. DESIGN Qualitative study using semistructured individual and group interviews. SETTING General practice and community settings in Barnsley and Rotherham health authorities. PARTICIPANTS 14 patients with stable angina and(More)
OBJECTIVE Having developed and validated a disease-specific health-related quality of life (HRQOL) measure for patients with systemic lupus erythematosus (SLE), the LupusQoL, we determined its relationship to demographic and clinical measurements in a group of patients with SLE. METHODS A group of 322 outpatients completed the LupusQoL. Demographic (age,(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 & AIMS Achieving and maintaining an ideal nutritional status is the primary aim of the nutritional management of cystic fibrosis (CF). It is unclear how nutritional interventions impact on patients' perceptions and behaviours concerning body image and eating. This work aimed to provide a psychosocial profile and compare CF patients receiving (a)(More)
OBJECTIVE A review of the literature was undertaken to evaluate the development and psychometric properties of health-related quality of life (HRQoL) measures used in adults with SLE. This information will help clinicians make an informed choice about the measures most appropriate for research and clinical practice. METHODS Using the key words lupus and(More)
BACKGROUND There is no standardised definition of a pulmonary exacerbation in cystic fibrosis (CF). In attempting to achieve standardised criteria it is important to identify patient-reported indicators. METHODS Interviews were undertaken with 47 adults with CF. Participants were asked to report symptoms experienced during a pulmonary exacerbation in two(More)
Studies measuring psychological distress in individuals with cystic fibrosis (CF) have found high rates of both depression and anxiety. Psychological symptoms in both individuals with CF and parent caregivers have been associated with decreased lung function, lower body mass index, worse adherence, worse health-related quality of life, more frequent(More)