Table 2 Key Caregiver-Specific Measures

Caregiving Style:

The Adult Caregiving Questionnaire [78]

Reliable and valid 32-item, self-report scale that assesses four subscales representing four different patterns of caregiving: proximity, sensitivity, controlling, and compulsive. Modified: “Partner” was substituted with “relative/friend” to ensure suitability for all caregivers.

Caregiver Experience:

The Caregiver Reaction

Assessment scale [79,80,81]

A 24-item, self-report instrument that is feasible, reliable, and valid for assessing both negative and positive reactions to caregiving among partners of patients with cancer. Modified: A version was created substituting “partner” with “relative/friend” to ensure suitability for all caregivers.

Physical and Psychosocial

Functioning:

The Medical Outcomes Study Short-Form 36 (SF-36) [82]

A reliable and valid 36-item self-report measure assessing eight dimensions of functioning: physical functioning, role limitations owing to physical problems, role limitations owing to emotional problems, social functioning, mental health, general health perceptions, vitality, and bodily pain.

*Grief:

The Texas Revised Inventory of Grief-Part II (TRIG-II) [83, 84]

The TRIG is a two-part questionnaire documenting past and present grief reactions. We will use Part II only, which has demonstrated reliability and validity and consists of 13 statements about present grief symptoms, including thoughts, feelings, memories, opinions, and attitudes.

*Acute Stress Symptoms:

The Posttraumatic Stress Disorder Checklist for DSM-5 (PCL-5) [85, 86]

The PCL-5 is a 20-item, widely used DSM-5-correspondent self-report measure that assesses symptoms of Posttraumatic Stress Disorder (PTSD). The PCL-5 can be used to monitor symptoms, screen individuals for PTSD, and make a provisional PTSD diagnosis. It has been shown to be a measure that is valid, reliable, and useful in quantifying PTSD symptom severity.

*Quality of Death:

The Quality of Dying and Death questionnaire (QODD) [87]

Administered by a research staff member/interviewer to bereaved proxy respondents, the QODD, the most widely used and best validated measure of the quality of death [88], asks caregivers about the patient’s last 7 days of life (if unconscious or unresponsive throughout the last 7 days, the focus is the last month before death) and covers 6 domains: symptoms and personal care, treatment preferences, time with family, whole person concerns, preparation for death, and moment of death.