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. Author manuscript; available in PMC: 2023 Jun 1.
Published in final edited form as: J Pain Symptom Manage. 2022 Jun;63(6):e621–e632. doi: 10.1016/j.jpainsymman.2022.03.009

Table 6:

Study Outcomes and Data Collection Protocol

MAIN OUTCOME MEASURES CONCEPT DATA SOURCE & COLLECTION TIME
Primary Outcome:
• Full QOC, questions answered specifically about CPR(24, 25) Quality of communication about CPR Patients & Families: Enrollment and hospital discharge

Secondary Outcomes:
• CANHELP questionnaire, communication domain focused specifically on CPR(52, 53) Satisfaction with communication about CPR Patients & Families: Enrollment and hospital discharge

• Hospital Anxiety and Depression Scale (HADS)(54, 55) Depressive and anxiety symptoms Patients & Families: Enrollment; hospital discharge; 3 & 6 months post-enrollment

• Presence of and time to DNR orders in electronic medical record Presence of and time to DNR orders Medical record: Throughout hospitalization and to 6 months

• Hospital and ICU admission/length of stay, mechanical ventilation, CPR, tracheostomy, hemodialysis, gastrostomy, ED visits, clinic visits, skilled nursing facility, home health care(2729, 31, 56, 57) Intensity of care during index hospitalization, health care utilization, costs of care Medical record: Throughout hospitalization and to 6 months Patients & Families: 3 and 6 months post-enrollment

• Inpatient and ICU admissions, outpatient and emergency visits, skilled nursing facility care, and home health care visits Healthcare utilization Patients, Families: 3 and 6 months post-enrollment

Abbreviations: QOC (Quality of Communication) questionnaire)(24, 25); CANHELP (Canadian Health Care Evaluation Project)(52, 53); HADS (Hospital Anxiety and Depression Scale(54, 55); DNR (Do Not Resuscitate); ICU (Intensive Care Unit); CPR (Cardiopulmonary Resuscitation); ED (Emergency Department)