Table 1

Summary of survey measures

MeasureDescriptionS1S2
DemographicsAge, gender, marital status, education, income, number of dependents in household, postcode, private health insurance status.X
Patient-reported outcome measuresCHU9D and PedsQL family impact for paediatric surveys
OR
SF-12 for adult surveys
XX
Experience of the multidisciplinary clinicThree study-specific questions exploring advantages and disadvantages of multidisciplinary renal genetics clinics.XX
Genetic counselling24-item scale measuring outcomes of genetic counselling GCOS-24 .XX
Family planningFour study-specific questions addressing plans for another child, estimated recurrence of the kidney condition, concern about recurrence, interest in reproductive technologies (parent surveys only).X
UnderstandingIn survey 1, eight study-specific questions address participant understanding of: types of potential results (four questions), potential familial implications (one question), ways in which the data can be used (two questions) and number of genes examined (one question).
In survey 2, two study-specific questions used to measure recall and understanding of result.
XX
Willingness to pay (value)Study-specific questions included to establish a quantitative reference for the value placed on testing.XX
Information provisionStudy-specific questions to assess participant perception about the way in which information (3 items—S1) and results (3 items—S2) were provided.XX
Hopes/expectationEight study-specific questions exploring participants’ reasons for agreeing to the test, rated on a 5-point scale as extremely unimportant to extremely important.X
LikelihoodOne study-specific question to determine participant’s perception of the likelihood testing will find the cause of the condition.X
Decision regret5-item scale measuring distress or remorse after a (healthcare) decision (ref O’Connor).18 X
Value of the testEleven study-specific questions exploring the value to participants of having had the test rated on a 4-point scale as not valuable to extremely valuable or not applicable.X
Impact of the testTwo study-specific questions asking about the impact of the test on family planning.X
  • CHU9D, Child Health Utility 9D instrument; GCOS-24, Genetic Counselling Outcome Scale; PedsQL, Pediatric Quality of Life Inventory; SF-12, 12-Item Short Form Health Survey.