Please use this identifier to cite or link to this item: https://doi.org/10.1186/1472-6963-8-116
Title: Protocol for stage 2 of the GaP study (genetic testing acceptability for Paget's disease of bone): A questionnaire study to investigate whether relatives of people with Paget's disease would accept genetic testing and preventive treatment if they were available
Authors: Langston, A.L
Johnston, M
Francis, J
Robertson, C
Campbell, M.K
Entwistle, V.A 
Marteau, T
MacLennan, G
Weinman, J
McCallum, M
Miedzybrodska, Z
Charnock, K
Ralston, S.H
Keywords: article
clinical protocol
family history
genetic analysis
human
Paget bone disease
patient attitude
patient participation
postal mail
prophylaxis
questionnaire
relative
Theory of Planned Behavior
family
female
genetic screening
genetics
health behavior
male
Paget nipple disease
patient attitude
psychological aspect
questionnaire
Family
Female
Genetic Screening
Health Behavior
Humans
Male
Paget's Disease, Mammary
Patient Acceptance of Health Care
Questionnaires
Issue Date: 2008
Citation: Langston, A.L, Johnston, M, Francis, J, Robertson, C, Campbell, M.K, Entwistle, V.A, Marteau, T, MacLennan, G, Weinman, J, McCallum, M, Miedzybrodska, Z, Charnock, K, Ralston, S.H (2008). Protocol for stage 2 of the GaP study (genetic testing acceptability for Paget's disease of bone): A questionnaire study to investigate whether relatives of people with Paget's disease would accept genetic testing and preventive treatment if they were available. BMC Health Services Research 8 : 116. ScholarBank@NUS Repository. https://doi.org/10.1186/1472-6963-8-116
Rights: Attribution 4.0 International
Abstract: 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. © 2008 Langston et al; licensee BioMed Central Ltd.
Source Title: BMC Health Services Research
URI: https://scholarbank.nus.edu.sg/handle/10635/177969
ISSN: 14726963
DOI: 10.1186/1472-6963-8-116
Rights: Attribution 4.0 International
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