title: The benefits and harms of rheumatic heart disease screening from the perspective of the screened population.
abstract: BACKGROUND
  A reduction in the burden of rheumatic heart disease (RHD) may be possible by identifying the condition while the patient is still asymptomatic. Currently, there is much debate about whether it is appropriate to screen for the presence of rheumatic heart disease (RHD) in a symptomless population. The purpose of this study was to identify self-reported benefits and harms from the perspective of screening participants and their families.
  
  
  METHODS
  In order to describe participant experiences and changes in behaviour post-screening, we interviewed a sample of parents/caregivers of children who were screened for the presence of RHD between 2007 and 2012 (n=276). A total of n=91 parents/caregivers of children diagnosed with either definite, probable or possible/borderline RHD ('abnormal' cases) were interviewed either by telephone or in-person, along with at least two matched controls (n=185 'normal' controls).
  
  
  RESULTS
  We observed evidence of long-standing anxiety and changes in physical activity among those who received an 'abnormal' screening result. The screening event appeared to have minimal impact on those who received a 'normal' result. There was some evidence of improved sore throat advice-seeking following the screening event, particularly among case respondents; however this group showed poorer understanding of the screening test compared to control respondents.
  
  
  CONCLUSIONS
  Among other points of discussion, this study brings to light issues regarding a) diminished physical activity habits among those receiving an abnormal result; b) levels of worry (and reassurance) among the screened population, depending on screening outcome; and c) general issues regarding the health literacy of the screened population.
authors.affiliation: Department of Public Health, University of Otago, Wellington, New Zealand. Electronic address: jason.gurney@otago.ac.nz.
authors.forename: J
authors.initials: J
authors.lastname: Gurney
authors.affiliation: CBG Health Research Ltd., Auckland, New Zealand.
authors.forename: A
authors.initials: A
authors.lastname: Chong
authors.affiliation: Starship Children's Hospital, Auckland, New Zealand.
authors.forename: N
authors.initials: N
authors.lastname: Culliford-Semmens
authors.affiliation: Starship Children's Hospital, Auckland, New Zealand.
authors.forename: E
authors.initials: E
authors.lastname: Tilton
authors.affiliation: Green Lane Paediatric and Congenital Cardiology, Starship Children's Hospital, Auckland, New Zealand; University of Auckland, New Zealand.
authors.forename: N J
authors.initials: NJ
authors.lastname: Wilson
authors.affiliation: Department of Public Health, University of Otago, Wellington, New Zealand.
authors.forename: D
authors.initials: D
authors.lastname: Sarfati
mesh_terms: D000293:Adolescent; D017028:Caregivers / Q000523:psychology; D002648:Child; D015444:Exercise / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D009520:New Zealand / Q000453:epidemiology; D011159:Population Surveillance / Q000379:methods; D012214:Rheumatic Heart Disease / Q000175:diagnosis* / Q000453:epidemiology* / Q000523:psychology; D018570:Risk Assessment
keywords: Echocardiography; Rheumatic heart disease; Screening