Table 2.
Survey instrument summary.
| Measures | Instrument | Description | Population | Time (min) | Baseline | Discharges | Day 100 |
| Activation | Parent-PAM [12] | Modified version of PAM, which was developed to study parental activation using physical, emotional, and role domains of general functioning | Caregivers | 5-7 | X | X | X |
| Satisfaction | Press Ganey [24] | Patient inpatient experience and overall satisfaction | Caregivers | 5-7 |
|
X | X |
| Anxiety | State Trait Anxiety Inventory [25] | Commonly used and validated tool with good test-retest reliability | Caregivers | 5 | X | X | X |
| Mood | Profile of Mood States [26] | Assess transient distinct mood states with 6 factor-based subscales: tension/anxiety, depression/dejection, anger/hostility, fatigue/inertia, vigor/activity, and confusion/bewilderment | Caregivers | 5-7 | X | X | X |
| Burden | Caregiver Quality of Life—Cancer [27] | 35-item rating scale measuring physical, emotional, family, and social functioning burden will also be used to evaluate caregiver burden | Caregivers | 8-10 | X | X | X |
| Stress | Impact of Event-Revised [28,29] | 22-item scale measuring difficulty faced over the past 7 days; the score may be reflective of an acute stress disorder | Caregivers | 5-7 | X | X | X |
| Miscarried helping | Helping for Health Inventory [30] | 15-item scale to assess how caregivers perceive their own communication style regarding the patient’s chronic illness; assesses miscarried helping (ie, how the well-intentioned efforts of caregivers of children with chronic diseases may become barriers to successful treatment) | Caregivers | 5 | X | X | X |
| Experiential avoidance | Parental Acceptance and Action Questionnaire (PAAQ) [31] | 15-item scale that assesses experiential avoidance within the caregiver role. The PAAQ includes 2 factors: "inaction," composed of 9-items; and "unwillingness," composed of the remaining 6-items | Caregivers | 5 | X | X | X |
| Usefulness | Usefulness [32] | Custom questionnaire, as there are no validated instruments for measuring satisfaction specific to the BMT Roadmap information system | Caregivers, health care professionals | 2 | X | X | X |
| Usability | Usability [32] | Custom questionnaire, as there are no validated instruments for measuring satisfaction specific to the BMT Roadmap information system | Caregivers, Health care professionals | 2 | X | X | X |