Table 4.
Schedule of Study Assessments and Measures
| Measure | Completed By | Time Point | Descriptions | Psychometrics |
|---|---|---|---|---|
| Demographic Data Interview | AYA/F | 0 | Demographic data collection | N/A |
| Psychological Interview (Inclusion/Exclusion Criteria) | AYA/F | 0 | Standardized questions to screen for sucidality, homicidality and psychosis | N/A |
| Beck Depression Inventory-II (BDI-II) | AYA/F | 0 | Used as a screening tool for both AYA and family. Used to assess depressed mood. 21 items. | Internal reliability, internal consistency (α=0.91), factorial validity, concurrent, convergent and discriminant validity [44–46] |
| Medical Chart Abstraction (EHR) | SS | 0, 7 | AYA diagnosis, time since diagnosis, hospitalization, ER visit or other treatments since last study visit, care coordination | N/A |
| Medical History | SS | 0 | Assesses date of AYA diagnosis, hospitalization, ER visits, treatments, prognosis for survival. | N/A |
| Patient-Reported Outcomes Measurement Information System Short Forms (PROMIS-SF) | AYA | 0, 4, 5, 6, 7 | Valid and reliable measure of patient’s Emotional distress-Anxiety, Emotional Distress-Depressive Symptoms; Fatigue; and Pain Interference. 34 items total. | Internal reliability, internal consistency (α=0.90), convergent and discriminant validity [47] |
| Brief Multidimensional Measurement of Religiousness/Spirituality (BMMRS-adapted) | AYA/F | 0, 4, 5, 6, 7 | Assess the construct of spiritual functioning and religious practices, e.g. religious preferences and practices, feeling God’s presence. Nonreligious participants can pass on these items. 41 items. | Internal reliability, internal consistency (α =≥0.70); Factorial, construct, convergent, discriminant validity [48–50] |
| Functional Assessment of Chronic Illness Therapy of Spiritual Well Being Scale-IV (FACIT-Sp IV) | AYA/F | 0, 4, 5, 6, 7 | Assesses spiritual well-being and its relation to illness. 23 items. | Internal reliability, internal consistency (α≥0.80), factorial, convergent, and concurrent validity [51–53] |
| Family Appraisal of Caregiving Questionnaire (FACQ) | F | 0, 4, 5, 6, 7 | Assesses experiences of caring for the patient in the past two weeks. 25 items. | Internal consistency (α≥0.70), convergent and discriminant validity [54] |
| Statement of Treatment Preferences (SoTP) | AYA/F | 2, 4,5, 6, 7 | Tool to express values and goals related to future decision-making re: frequently occurring situations. 6 situations. | N/A |
| Satisfaction Questionnaire | AYA/F | 2 | Process measure assessing participant satisfaction. 5 items. | N/A |
| Longitudinal Satisfaction Questionnaire | AYA/F | 4, 5, 6, 7 | Process measure assessing participant satisfaction. 5 items. | N/A |
Key: AYA = adolescents and young adults; F = family/surrogate decision maker; SS = study staff; 0 = Screening/Baseline; 1 = Session 1; 2 = Session 2; 3 = Session 3; 4 = 3-month visit; 5 = 6-month visit; 6 = 12-month visit; 7 = 18-month visit