Browsing by Author "Langston, Anne L."

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Implicit self-comparisons against others could bias quality of life assessments
(Elsevier, 2007) Fayers, Peter; Langston, Anne L.; Robertson, Clare
Objectives: To explore how patient-reported health related quality of life (HRQL) and global health status are affected by use of differing personal reference frames. We hypothesised that implicit comparisons against self at an earlier time, against healthy peers or against ill patients would greatly affect patients’ response values. Study design and setting: Patients in a randomised trial for treatment of Paget’s disease completed annual HRQL questionnaires. Supplementary questions were appended, asking the patients whether they were aware of having made implicit comparisons. Results: The majority of patients reported considering themselves a year ago (31% at baseline), themselves before becoming ill (23%) or other healthy people (24%), with similar proportions during follow up. Mean HRQL scores varied substantially according to the declared frame of reference, with differences as big as 19% of the scale score, or a standardised mean effect size of 0.74 standard deviations. Conclusion: Reported reference frames were associated with effects of similar magnitude to the differences in HRQL that are regarded as clinically important. This may be of particular concern in trials that andomise patients to management in different settings, such as treatment at home / in hospital, or surgery / chemotherapy, and might bias or obscure HRQL differences.
Meaning behind measurement : self-comparisons affect responses to health related quality of life questionnaires
(Springer, 2009) Robertson, Clare; Langston, Anne L.; Stapley, Sally; McColl, Elaine; Campbell, Marion Kay; Fraser, William D.; MacLennan, Graeme Stewart; Selby, Peter L.; Ralston, Stuart H.; Fayers, Peter M.; PRISM Trial Group; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health Sciences
Purpose The subjective nature of quality of life is particularly pertinent to the domain of health-related quality of life (HRQOL) research. The extent to which participants’ responses are affected by subjective information and personal reference frames is unknown. This study investigated how an elderly population living with a chronic metabolic bone disorder evaluated self-reported quality of life. Methods Participants (n = 1,331) in a multi-centre randomised controlled trial for the treatment of Paget’s disease completed annual HRQOL questionnaires, including the SF-36, EQ-5D and HAQ. Supplementary questions were added to reveal implicit reference frames used when making HRQOL evaluations. Twenty-one participants (11 male, 10 female, aged 59–91 years) were interviewed retrospectively about their responses to the supplementary questions, using cognitive interviewing techniques and semi-structured topic guides. Results The interviews revealed that participants used complex and interconnected reference frames to promote response shift when making quality of life evaluations. The choice of reference frame often reflected external factors unrelated to individual health. Many participants also stated that they were unclear whether to report general or disease-related HRQOL. Conclusions It is important, especially in clinical trials, to provide instructions clarifying whether ‘quality of life’ refers to disease-related HRQOL. Information on selfcomparison reference frames is necessary for the interpretation of responses to questions about HRQOL.
Protocol for stage 1 of the GAP study (Genetic testing acceptability for Paget's disease of bone):an interview study about genetic testing and preventive treatment
(BMC Health Services Research, 2006-06-08) Langston, Anne L.; Johnston, Marie; Robertson, Clare; Campbell, Marion Kay; Entwistle, Vikki; Marteau, T M; McCallum, M; Ralston, S H; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health Sciences
Protocol for stage 2 of the GaP study (genetic testing acceptability for Paget's disease of the bone) : a questionnaire study to investigate whether relatives of people with Paget's disease would accept genetic testing and preventative treatment if they were available
(BioMed Central, 2008-05-29) Langston, Anne L.; Johnston, Marie; Francis, Jillian Joy; Robertson, Clare; Campbell, Marion Kay; Entwistle, Vikki; Marteau, Theresa; MacLennan, Graeme Stewart; Weinman, John; McCallum, Marilyn; Miedzybrodzka, Zosia; Charnock, Keith; Ralston, Stuart H.; University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health Sciences
Background: Paget's disease of bone (PDB) disrupts normal bone architecture and causes pain, deformity, deafness, osteoarthritis, and fractures. Genetic factors play a role in PDB and genetic tests are now conducted for research purposes. It is thus timely to investigate the potential for a clinical programme of genetic testing and preventative treatment for people who have a family history of PDB. This study examines the beliefs of relatives of people with PDB. It focuses particularly on illness and treatment representations as predictors of the acceptability and uptake of potential clinical programmes. Illness representations are examined using Leventhal's Common Sense Self-Regulation Model while cognitions about treatment behaviours (acceptance of testing and treatment uptake) are conceptualised within the Theory of Planned Behaviour. Methods/Design: A postal questionnaire of non-affected relatives of people with Paget's disease. The sample will include relatives of Paget's patients with a family history of Paget's disease and relatives of Paget's patients without a family history of Paget's disease. The questionnaire will explore whether a range of factors relate to acceptability of a programme of genetic testing and preventive treatment in relatives of Paget's disease sufferers. The questionnaire will include several measures: illness representations (as measured by the Brief Illness Perceptions Questionnaire); treatment representations (as measured by Theory of Planned Behaviour-based question items, informed by a prior interview elicitation study); descriptive and demographic details; and questions exploring family environment and beliefs of other important people. Data will also be collected from family members who have been diagnosed with Paget's disease to describe the disease presentation and its distribution within a family. Discussion: The answers to these measures will inform the feasibility of a programme of genetic testing and preventive treatment for individuals who are at a high risk of developing Paget's disease because they carry an appropriate genetic mutation. They will also contribute to theoretical and empirical approaches to predicting diagnostic and treatment behaviours from the combined theoretical models.