title: Patients' Perceptions of Their Relatives' Risk of Developing Rheumatoid Arthritis and of the Potential for Risk Communication, Prediction, and Modulation.
abstract: To understand the perspectives of patients with rheumatoid arthritis (RA) about the risk of their relatives developing RA in the future, and about communicating with their relatives concerning risk and its modulation.
  
  
  
  Twenty-one RA patients took part in semistructured interviews.
  
  
  
  Participants reported willingness to communicate with relatives about their risk of developing RA, but described choosing which relatives to communicate with, on the basis of the relatives' perceived receptivity to such risk information. Participants described the potential for risk information to cause negative emotions. Some participants did not consider RA to be hereditable, and few reported smoking as a risk factor. Patients described a lack of public awareness about the causes of RA and the negative impact that RA has on the quality of life. Awareness of this negative impact was identified as an important driver for predictive and preventive strategies. Participants held positive perceptions of predictive testing for RA, though the results of predictive tests were conceptualized as having a high degree of accuracy. Negative views of predictive testing were associated with an appreciation of the probabilistic nature of risk information. Participants felt that their relatives would prefer lifestyle modification over medication as a risk reduction strategy.
  
  
  
  Information about risk factors for RA, and the potential impact of RA on the quality of life, is needed to support family communication about RA risk. Management of expectations is needed in relation to the probabilistic nature of risk information, and appropriate support should be provided for negative psychological outcomes.
authors.affiliation: University of Birmingham, Birmingham, UK.
authors.forename: Marie
authors.initials: M
authors.lastname: Falahee
authors.affiliation: University of Birmingham, Birmingham, UK.
authors.forename: Gwenda
authors.initials: G
authors.lastname: Simons
authors.affiliation: University of Birmingham, and Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK.
authors.forename: Christopher D
authors.initials: CD
authors.lastname: Buckley
authors.affiliation: University of Uppsala, Uppsala, Sweden.
authors.forename: Mats
authors.initials: M
authors.lastname: Hansson
authors.affiliation: University of Birmingham, Birmingham, and Trent University, Nottingham, UK.
authors.forename: Rebecca J
authors.initials: RJ
authors.lastname: Stack
authors.affiliation: University of Birmingham, and Sandwell and West Birmingham Hospitals NHS Trust, Birmingham, UK.
authors.forename: Karim
authors.initials: K
authors.lastname: Raza
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D018501:Antirheumatic Agents / Q000627:therapeutic use; D001172:Arthritis, Rheumatoid / Q000175:diagnosis / Q000235:genetics / Q000523:psychology* / Q000628:therapy; D001364:Awareness; D003142:Communication; D004644:Emotions; D005190:Family / Q000523:psychology*; D005195:Family Relations; D005260:Female; D020022:Genetic Predisposition to Disease; D007722:Health Knowledge, Attitudes, Practice; D040941:Heredity; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D010375:Pedigree; D010465:Perception; D010641:Phenotype; D011788:Quality of Life; D018570:Risk Assessment; D012307:Risk Factors; D040242:Risk Reduction Behavior; D012907:Smoking / Q000009:adverse effects
chemical_list: D018501:Antirheumatic Agents