Protocol - Prolonged Grief Disorder

Description

The Prolonged Grief Disorder (PG-13-Revised) is a self-administered questionnaire that includes 13 items to assess symptoms of prolonged grief disorder. 10 of the items are scored on a Likert-style scale from 1 (not at all) to 5 (overwhelmingly) to indicate how often that item describes how they are feeling. 3 of the items assess whether the respondent had lost a significant other, how long ago the death occurred, and impairment associated with symptoms. Scores of 30 or greater on the symptom items indicate prolonged grief disorder (PGD), and were associated with poorer emotional and mental health as well as work and social adjustment difficulties.

Specific Instructions

Users are encouraged to review item-level data to assist in identifying specific grief symptoms and characterizing domains most impacted.

Investigators conducting research on grief and loss should adequately prepare respondents because this questionnaire could be triggering for people who have experienced a traumatic loss.

Availability

This protocol is freely available; permission not required for use.

Protocol

Prolonged Grief Disorder (PG-13-Revised)

1. Have you lost someone significant to you?

[ ] Yes
[ ] No

2. How many months has it been since your significant other died?

_______ Months

For each item below, please indicate how you currently feel

Since the death, or as a result of the death...	Not at all	Slightly	Some what	Quite a bit	Overwhelmingly
3. Do you feel yourself longing or yearning for the person who died?	[ ]	[ ]	[ ]	[ ]	[ ]
4. Do you have trouble doing the things you normally do because you are thinking so much about the person who died?	[ ]	[ ]	[ ]	[ ]	[ ]
5. Do you feel confused about your role in life or feel like you don't know who you are any more (i.e., feeling like that a part of you has died)?	[ ]	[ ]	[ ]	[ ]	[ ]
6. Do you have trouble believing that the person who died is really gone?	[ ]	[ ]	[ ]	[ ]	[ ]
7. Do you avoid reminders that the person who died is really gone?	[ ]	[ ]	[ ]	[ ]	[ ]
8. Do you feel emotional pain (e.g., anger, bitterness, sorrow) related to the death?	[ ]	[ ]	[ ]	[ ]	[ ]
9. Do you feel that you have trouble re-engaging in life (e.g., problems engaging with friends, pursuing interests, planning for the future)?	[ ]	[ ]	[ ]	[ ]	[ ]
10. Do you feel emotionally numb or detached from others?	[ ]	[ ]	[ ]	[ ]	[ ]
11. Do you feel that life is meaningless without the person who died?	[ ]	[ ]	[ ]	[ ]	[ ]
12. Do you feel alone or lonely without the deceased?	[ ]	[ ]	[ ]	[ ]	[ ]

13. Have the symptoms above caused significant impairment in social, occupational, or other important areas of functioning?

[ ] Yes
[ ] No

Scoring: A summary score for the symptom items is calculated by totaling each individual item score from 1 (not at all) to 5 (overwhelmingly) across items 3 through 12. Symptom scores can range from 10 to 50. A score of 30 or greater indicates syndromal-level PGD.

Personnel and Training Required

Investigators conducting research on grief and loss should be trained in clinical skills to introduce, prepare, and debrief respondents following the questionnaire.

Equipment Needs

None

Requirements

Requirement Category	Required
Major equipment	No
Specialized training	No
Specialized requirements for biospecimen collection	No
Average time of greater than 15 minutes in an unaffected individual	No

Mode of Administration

Self-administered questionnaire

Lifestage

Adult, Senior

Participants

Adults ages 18 years and older

Selection Rationale

The PG-13-Revised is a brief and easily administered, well-studied, and validated assessment that captures symptoms of prolonged grief disorder.

Language

English

Standards

Standard	Name	ID	Source
caDSR Form	PX871201 Prolonged Grief Disorder	14295567	caDSR Form

Derived Variables

None

Process and Review

Not applicable

Protocol Name from Source

Prolonged Grief Disorder (PG-13-R)

Source

Prigerson, H. G., Boelen, P. A., Xu, J., Smith, K. V., & Maciejewski, P. K. (2021). Validation of the new DSM-5-TR criteria for prolonged grief disorder and the PG-13-Revised (PG-13-R) scale. World psychiatry : official journal of the World Psychiatric Association (WPA), 20(1), 96–106.

General References

De Stefano, R., Muscatello, M., Bruno, A., Cedro, C., Mento, C., Zoccali, R. A., & Pandolfo, G. (2021). Complicated grief: A systematic review of the last 20?years. International Journal of Social Psychiatry, 67(5), 492-499.

Fisher, J. E., Mauro, C., Cozza, S. J., Wall, M., Simon, N. M., Ortiz, C. D., Harrington-LaMorie, J., Wang, Y., Fullerton, C. S., Ursano, R. J., & Shear, M. K. (2017). Examination of factor structure of the Inventory of Complicated Grief (ICG) in a sample of bereaved military family members with persistent and elevated grief. International Journal of Methods in Psychiatric Research, 26(3), e1571.

Melhem, N. M., Moritz, G., Walker, M., Shear, M. K., & Brent, D. (2007). Phenomenology and correlates of complicated grief in children and adolescents. Journal of the American Academy of Child and Adolescent Psychiatry, 46(4), 493-499.

Olwit, C., Mugaba, M., Osingada, C. P., & Nabirye, R. C. (2018). Existence, triggers, and coping with chronic sorrow: A qualitative study of caretakers of children with sickle cell disease in a National Referral Hospital in Kampala, Uganda. BMC Psychology, 6(1), 50.

Prigerson, H. G., Maciejewski, P. K., Reynolds, C. F., 3rd, Bierhals, A. J., Newsom, J. T., Fasiczka, A., Frank, E., Doman, J., & Miller, M. (1995). Inventory of Complicated Grief: A scale to measure maladaptive symptoms of loss. Psychiatry Research, 59(1-2), 65-79.

Smid, G. E., Groen, S., de la Rie, S. M., Kooper, S., & Boelen, P. A. (2018). Toward cultural assessment of grief and grief-related psychopathology. Psychiatric Services, 69(10), 1050-1052.

Protocol ID

871201

Variables

Export Variables

Variable Name	Variable ID	Variable Description	dbGaP Mapping
PX871201_Prolonged_Grief_Disorder_Alone_Without_Deceased
	PX871201120000	Do you feel alone or lonely without the deceased?	N/A
PX871201_Prolonged_Grief_Disorder_Emotionally_Numb_Detach
	PX871201100000	Do you feel emotionally numb or detached more from others? show less	N/A
PX871201_Prolonged_Grief_Disorder_Emotional_Pain
	PX871201080000	Do you feel emotional pain (e.g., anger, more bitterness, sorrow) related to the death? show less	N/A
PX871201_Prolonged_Grief_Disorder_Months_Significant_Other_Died
	PX871201020000	How many months has it been since your more significant other died? show less	N/A
PX871201_Prolonged_Grief_Disorder_Trouble_Believe_Person_Really_Gone
	PX871201060000	Do you have trouble believing that the more person who died is really gone? show less	N/A
PX871201_Prolonged_Grief_Disorder_Trouble_Doing_Normal_Things
	PX871201040000	Do you have trouble doing the things you more normally do because you are thinking so much about the person who died? show less	N/A

SCD Psychosocial and Social Determinants of Health

Measure Name

Prolonged Grief Disorder

Release Date

May 26, 2023

Definition

A measure to assess symptoms of grief and response to loss.

Purpose

This measure assesses feelings of grief, or grief distinct from bereavement-related depression and anxiety, and a participant’s reactions following a someone’s death. Grief and loss can affect mental health and physical functioning and may be important for conditions that lead to early aging such as sickle cell disease.

Keywords

sickle cell disease, SCD, psychosocial and social determinants of health, grief, loss, bereavement, depression, anxiety, grief, loss, early aging, Physical function

Measure Protocols

Protocol ID	Protocol Name
871201	Prolonged Grief Disorder