title: Patient and health-care impact of a pilot rheumatic heart disease screening program.
abstract: OBJECTIVE
  The aim of this study was to assess the impact of a pilot screening program for rheumatic heart disease (RHD) on patient quality of life (QOL) and health services.
  
  
  METHODS
  A QOL questionnaire (CHQ-PF28) was used to assess the impact of RHD screening on children with a potentially abnormal screening echocardiogram and matched normal controls. The health service response to a potentially abnormal screening echocardiogram and the impact of the screening program on health services was evaluated using medical record review, carer interviews and surveys of health-care providers.
  
  
  RESULTS
  QOL was assessed in 68 children. Potentially abnormal screening echocardiograms were associated with poorer QOL in the General Health Perception (P < 0.05) and Parental Impact - Emotional (P < 0.05) domains. Health services contacted 82% of children with potentially abnormal echocardiograms, and clinical review occurred in 56%. A potentially abnormal echocardiogram was associated with a change in management in 6% (2/34) of children. When surveyed, 49% of health providers were aware of the RHD screening program, 29% had seen children referred with screening abnormalities and 85% of these providers stated this had an impact on local health-care delivery.
  
  
  CONCLUSIONS
  This pilot RHD screening program was associated with poorer child and carer QOL for those with potentially abnormal results, greater health provider workload and suboptimal clinical follow-up. The adoption of screening for RHD in high-risk populations should be approached cautiously. Further research is required to facilitate and validate improved echocardiographic diagnostic criteria for RHD and the systematic assessment of the benefits and adverse effects of such screening.
authors.affiliation: Cairns Clinical School, Faculty of Medicine, Health and Molecular Sciences, James Cook University, Cairns Base Hospital, Cairns, Queensland, Australia.
authors.forename: Emma Kathleen
authors.initials: EK
authors.lastname: Wark
authors.forename: Yvonne Coral
authors.initials: YC
authors.lastname: Hodder
authors.forename: Cindy Estelle
authors.initials: CE
authors.lastname: Woods
authors.forename: Graeme Paul
authors.initials: GP
authors.lastname: Maguire
mesh_terms: D017028:Caregivers / Q000523:psychology; D016022:Case-Control Studies; D002648:Child; D042241:Early Diagnosis; D004452:Echocardiography / Q000379:methods; D005260:Female; D006801:Humans; D008297:Male; D008403:Mass Screening / Q000009:adverse effects / Q000379:methods / Q000523:psychology; D010865:Pilot Projects; D011787:Quality of Health Care; D011788:Quality of Life; D011793:Queensland; D012214:Rheumatic Heart Disease / Q000175:diagnosis* / Q000517:prevention & control; D055502:Secondary Prevention / Q000379:methods*