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Table 1 Survey measures

From: The PiGeOn project: protocol of a longitudinal study examining psychosocial and ethical issues and outcomes in germline genomic sequencing for cancer

Domain Measures Baseline
(T0)
Follow-up 1 (T1)
(3 months post-baseline)
Follow-up 2 (T2)
(12 months post-baseline)
Demographics
 Age, gender, marital status, education level, occupation etc Demographic items x   
Views and attitudes
 Perceived importance of GGS Adapted from Hay et al. [54] x   
 Knowledge Study-developed x   
 Preferences for who tested Ballinger et al. [55] x   
 Value of GGS Adapted from previous studies [41, 56, 57] x   
 Result return preferences Ballinger et al. [55] x   
 Perceived benefits and drawbacks of GGS Adapted from Jamal et al. [61]   x x
 Anticipated behavioural change Study-developed x   
Psychological factors
 Coping with uncertainty Kasparian et al. [60] x   
 Self-efficacy Adapted from Rosenberg et al. [59] x   
 Perceived susceptibility Kasparian et al. [60] x x x
Psychological outcomes
 Coping with waiting for GGS results Multidimensional impact of cancer risk assessment (adapted) [64]   x x
 Fear of cancer (recurrence) Concerns about Recurrence Questionnaire [67] x x x
 Cancer specific anxiety Impact of events scale [62]   x x
 Anxiety and depression Hospital anxiety and depression scale [63]   x x
 Hope Herth Hope Index [65]   x x
Decisional outcomes
 Decisional satisfaction Satisfaction with Decision Scale [68] x x x
 Decisional regret Decision Regret Scale [66]   x x
  1. GGS germline genome sequencing