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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