Table 2.
Study Participant-Reported Measures
| Name of measure | Description | Participant | Time points |
|---|---|---|---|
| Sociodemographic Questionnaire | 19-Item measure on age, gender, race/ethnicity, marital status, religion, education level, computer experience, and travel time and transportation mode to the cancer center | Patient and caregiver | Baseline only |
| SCQ28 | 16-Item instrument assessing comorbidities such as heart disease, lung disease, diabetes and arthritis. | Patient only | Baseline only |
| FACT-L19 | 35-Item QOL measure of physical, social, emotional, and functional well-being (27 items), as well as lung cancer symptoms (8 items) over the past week | Patient only | All |
| Patient PTPQ20,21 | 13-Item measure of patients' illness understanding, communication about prognosis with oncologist, and discussions and preferences regarding EOL care | Patient only | All |
| PHQ-927 | 9-Item measure of symptoms of major depressive disorder in the past two weeks per the criteria of the Diagnostic and Statistical Manual of Mental Disorders | Patient only | All |
| Brief Cope23,24 | 28-Item questionnaire that assesses 14 methods of coping (e.g., active, acceptance, denial) using a 4-point Likert scale ranging from 1 “a lot” to 4 “never” | Patient only | All |
| Support Service Utilization | Single-item measure of mental health care utilization since diagnosis | Patient only | 24 weeks |
| HADS26 | 14-Item questionnaire that contains two 7-item subscales assessing depression and anxiety symptoms during the past week | Patient and caregiver | All |
| Satisfaction with Care Delivery Questionnaire22 | 13-Item measure of satisfaction with PC visits with respect to: (1) convenience, (2) quality of communication and personal connection, (3) engagement of caregivers, and (4) overall satisfaction | Patient and caregiver | 12, 24, 36, and 48 weeks |
| CARGOQOL25 | 29-Item instrument measuring caregiver QOL in multiple domains | Caregiver only | All |
| Caregiver PTPQ20,21 | 6-Item questionnaire adapted from the patient PTPQ to assess caregivers' understanding of their loved ones' illness understanding and perceptions of communication about prognosis, goals of care, and EOL care preferences | Caregiver only | All |
| After Death Assessment20 | 3-Item measure in which caregivers rate the care they received in the last week of patient's life using a 10-point scale for (1) quality of patient's death (ranging from “worse possible” to “best possible), (2) patient's physical distress (ranging from “none” to “extremely distressed”), and (3) patient's psychological distress (ranging from “none” to “extremely upset”) | Caregiver only | 3 months after patient death |
CARGOQOL, Caregiver Oncology QOL Questionnaire; FACT-L, Functional Assessment of Cancer Therapy-Lung; HADS, Hospital Anxiety and Depression Scale; PHQ-9, Patient Health Questionnaire-9; PTPQ, Patient Prognosis and Treatment Perceptions Questionnaire; QOL, quality of life; SCQ, Self-Administered Comorbidity Questionnaire.