World Psychiatry - 2021 - Prigerson - Validation of The New DSM 5 TR Criteria For Prolonged Grief Disorder and The
World Psychiatry - 2021 - Prigerson - Validation of The New DSM 5 TR Criteria For Prolonged Grief Disorder and The
Although the concept of pathological grief dates back at least as far as Freud’s “Mourning and Melancholia”, there has been opposition to its
recognition as a distinct mental disorder. Resistance has been overcome by evidence demonstrating that distinctive symptoms of prolonged grief
disorder (PGD) – an attachment disturbance featuring yearning for the deceased, loss of meaning and identity disruption – can endure, prove
distressing and disabling, and require targeted treatment. In acknowledgement of this evidence, the American Psychiatric Association Assembly
has recently voted to include PGD as a new mental disorder in the DSM-5-TR. We tested the validity of the new DSM criteria for PGD and of an
adapted version of our PG-13 scale, the PG-13-Revised (PG-13-R), designed to map onto these criteria, using data from investigations conducted
at Yale University (N=270), Utrecht University (N=163) and Oxford University (N=239). Baseline assessments were performed at 12-24 months
post-loss; follow-up assessments took place 5.3-12.0 months later. Results indicated that the PG-13-R grief symptoms represent a unidimensional
construct, with high degrees of internal consistency (Cronbach’s alpha = 0.83, 0.90 and 0.93, for Yale, Utrecht and Oxford, respectively). The
DSM PGD diagnosis was distinct from post-traumatic stress disorder (phi=0.12), major depressive disorder (phi=0.25) and generalized anxiety
disorder (phi=0.26) at baseline. Temporal stability was remarkable for this diagnosis (r=0.86, p<0.001). Kappa agreement between a PG-13-R
threshold symptom summary score of 30 and the DSM symptom criterion for PGD was 0.70-0.89 across the datasets. Both the DSM PGD di-
agnosis and the PG-13-R symptom summary score at baseline were significantly associated (p<0.05) with symptoms and diagnoses of major
depressive disorder, post-traumatic stress disorder and/or generalized anxiety disorder, suicidal ideation, worse quality of life and functional
impairments at baseline and at follow-up, in the Yale, Utrecht and Oxford datasets. Overall, the DSM-5-TR criteria for PGD and the PG-13-R
both proved reliable and valid measures for the classification of bereaved individuals with maladaptive grief responses.
Key words: Prolonged grief disorder, DSM-5-TR, PG-13-R, ICD-11, pathological grief, bereavement, post-traumatic stress disorder
Although the concept of pathological grief dates back at least but that they may respond only to specialist treatment. Specifi-
as far as Freud’s Mourning and Melancholia1, there has been cally, studies have documented that certain grief symptoms are
public and professional opposition to its recognition as a men- distinct from those of bereavement-related depression6-9, have
tal disorder2-5. For example, a 2015 international online survey of idiosyncratic neurobiological10 and clinical11-13 correlates, can
public attitudes revealed that approximately 25% of respondents persist unabated for months or even years8,14, prove distressing
did not endorse the position that grief could be a mental disor- and dysfunctional14-16, and may only respond to targeted inter-
der2. More recently, an online survey on public opinion in Chi- vention17,18. Thus, there exists a substantial and mounting body
na found that about 40% of participants did not agree that grief of evidence in support of a psychiatric syndrome of maladaptive
could be a mental disorder, even under circumstances such as grief.
threat of harm to self or others4. Concerns about “pathologizing” The ICD-11 Workgroup on Stress-Associated Disorders found
grief are reported to be rooted in the belief that all grief is normal the available evidence for prolonged grief disorder (PGD) suf-
and an expected response to the death of a loved one. Thus, a ficiently compelling to recommend its recognition as a new
diagnosis of pathological grief is considered to be tantamount to mental disorder19. The DSM-5 had included “persistent com-
stigmatizing, medicalizing and/or pathologizing love2,4. plex bereavement disorder” (PCBD) in Section III (i.e., among
Himself wary of pathologizing grief, Freud conceptualized “conditions for further study”). In response to the ICD’s inclu-
mourning (grief) as a normal, natural reaction to loss of a loved sion of PGD and the accumulated evidence, the DSM Steering
one, and even deemed working through grief as necessary to be- Committee convened a workshop in June 2019. An invited panel
reavement adjustment – the hard, often painful, work a mourner of researchers presented their data to the Committee, who con-
must do to withdraw emotional attachment to the deceased cluded that these data supported moving the disorder to Section
person. In fact, Freud considered medical interference in “grief II (i.e., among recognized mental disorders). A provisional PGD
work” to be “inadvisable if not even harmful”1. By contrast, he criteria set was then drafted, and the researchers were tasked
considered melancholia (i.e., depression) the pathological re- with using the best data available to inform the parameters of the
sponse to bereavement, and noted that this condition, not grief, PGD diagnostic algorithm, and then to evaluate that algorithm’s
posed a risk for suicide, and warranted medical attention. reliability and validity. The researchers submitted their reports,
Research over the past quarter century has shown not only which found the same PGD diagnostic algorithm to be optimal.
that a small but substantial proportion of grief reactions can The Steering Committee then posted that PGD algorithm online
be severe, disabling, and endure beyond normal expectations, on the American Psychiatric Association (APA)’s website and
A. The death, at least 12 months ago, of a person who was close to the bereaved (for children and adolescents, at least 6 months ago).
B. Since the death, there has been a grief response characterized by one or both of the following, to a clinically significant degree, nearly every day or more
often for at least the last month:
1. Intense yearning/longing for the deceased person
2. Preoccupation with thoughts or memories of the deceased person (in children and adolescents, preoccupation may focus on the circumstances of the death)
C. As a result of the death, at least 3 of the following 8 symptoms have been experienced to a clinically significant degree since the death, including nearly
every day or more often for at least the last month:
1. Identity disruption (e.g., feeling as though part of oneself has died)
2. Marked sense of disbelief about the death
3. Avoidance of reminders that the person is dead (in children and adolescents, may be characterized by efforts to avoid reminders)
4. Intense emotional pain (e.g., anger, bitterness, sorrow) related to the death
5. Difficulty with reintegration into life after the death (e.g., problems engaging with friends, pursuing interests, planning for the future)
6. Emotional numbness (i.e., absence or marked reduction in the intensity of emotion, feeling stunned) as a result of the death
7. Feeling that life is meaningless as a result of the death
8. Intense loneliness (i.e., feeling alone or detached from others) as a result of the death
D. The disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning.
E. The duration and severity of the bereavement reaction clearly exceeds expected social, cultural, or religious norms for the individual’s culture and context.
F. The symptoms are not better explained by major depressive disorder, posttraumatic stress disorder, or another mental disorder, or attributable to the physi-
ological effects of a substance (e.g., medication, alcohol) or another medical condition.
©2020 American Psychiatric Association, all rights reserved. Reprinted with permission
complete responses to the new DSM PGD symptom items were was used for predictive external validity analysis, with a time lag
excluded (total missing rate ~5%), resulting in sample sizes of of 7.4±2.0, 12.0±0 (fixed by design), and 5.3±1.3 months after T1
N=270 (Yale), N=163 (Utrecht) and N=239 (Oxford), for a total of for Yale (N=48), Utrecht (N=90) and Oxford (N=35) subjects, re-
N=672. In participants with more than one assessment, the first spectively. All studies were approved by each university’s institu-
evaluation within the time frame was used for item evaluation tional review board.
and threshold sensitivity analysis. The average time post-loss for All three studies assessed the 10 symptom items included in
the first assessment (T1) was 16.7±2.6 months for the Yale study, both the new DSM criteria for PGD and the PG-13-R (yearning,
16.3±3.7 months for the Utrecht study, and 14.1±1.7 months for preoccupation, identity disruption, disbelief, avoidance, intense
the Oxford study. Participants’ next available assessment (T2) emotional pain, difficulty with reintegration, emotional numb-
ness, feeling that life is meaningless, and intense loneliness). Cronbach’s alpha of the PG-13-R symptom items was used to
These items (questions Q3 through Q12 in the PG-13-R) were evaluate the internal consistency (reliability) of the scale.
rated using a 5-point Likert scale ranging from “1 = not at all” to A principal components factor analysis was conducted for
“5 = overwhelmingly”. In the PG-13-R, the symptom items are each dataset at T1 to evaluate the dimensionality of the grief
accompanied by three gatekeeper items exploring whether the symptoms (Q3-Q12) construct. In each dataset, the eigenvalues
respondent had lost a significant other (Q1), how long ago the obtained from actual PG-13-R symptom item data were com-
death occurred (Q2), and impairment associated with the above pared with those obtained from simulated random data (parallel
symptoms (Q13) (see Figure 1). analysis)34.
In the Yale study, the occurrence of PTSD, major depressive The external validity of the 10-item PG-13-R symptom score
disorder (MDD), generalized anxiety disorder (GAD) and panic at T1, not including the impairment item (Q13), was assessed by
disorder was further explored using the Structured Clinical In- its associations with other concurrent (T1, concurrent validity)
terview for DSM-IV Axis I Disorders (SCID-I)26; suicidal ideation and follow-up (T2, predictive validity) psychological and behav-
was assessed using the Yale Evaluation of Suicidality (YES)27; ioral health measures within each dataset, including measures of
and quality of life in eight domains (physical functioning, role- depression, post-traumatic stress, suicidality, quality of life and
physical, bodily pain, general health, vitality, social functioning, functional impairments. Associations with dichotomous vari-
role-emotional, and mental health) was evaluated using the SF- ables were estimated as odds ratios (ORs) using logistic regres-
12 Health Survey28. sion; associations with continuous variables were evaluated with
In the Utrecht study, PTSD symptoms were assessed using Pearson’s correlation coefficients.
the PTSD Symptom Scale Self-Report (PSS-SR)29, and depressive The summed PG-13-R score for the symptom items may
symptoms by the Beck Depression Inventory (BDI-II)30. In the range from 10 to 50. The optimal threshold was the symptom
Oxford study, mental health problems were assessed using the score that had the highest degree of agreement (kappa statistic)
Posttraumatic Stress Disorder Checklist for DSM-5 (PCL-5)31, the with fulfillment of B and C symptom criteria for PGD according
Patient Health Questionnaire (PHQ-9)32 and the Work and Social to DSM within each dataset. The median maximum-agreement
Adjustment Scale (WSAS)33. threshold score across the datasets was taken to be the overall
optimal PG-13-R symptom threshold score.
The associations between the dichotomous PG-13-R diagnos-
Statistical analysis tic threshold score plus the three gatekeeper criteria (i.e., loss,
timing, impairment) as well as the DSM PGD diagnosis with the
The item performance of the PG-13-R symptom items (Q3- mental and behavioral health outcomes at baseline and follow-
Q12) was evaluated within each dataset at T1. This included up were estimated as ORs using logistic regression.
inspection of item means and variances, percentage of syndrom Phi coefficients were used to determine associations between
al-level responses (score of 4 or 5), and item-total correlations. PGD and other diagnosed mental disorders (e.g., MDD, PTSD,
Q3 Yearning 35.2% 2.9±1.3 0.81 0.59 68.1% 3.8±0.9 0.89 0.65 34.7% 3.1±1.2 0.92 0.75
Q4 Preoccupation 2.6% 1.3±0.8 0.82 0.53 26.4% 2.9±0.9 0.88 0.72 36.4% 3.2±1.2 0.92 0.74
Q5 Identity disruption 22.6% 2.2±1.4 0.81 0.58 42.3% 3.1±1.3 0.88 0.71 33.9% 2.7±1.4 0.92 0.76
Q6 Disbelief 6.3% 1.5±1.0 0.82 0.50 27.0% 2.9±1.2 0.89 0.56 33.9% 2.8±1.3 0.92 0.69
Q7 Avoidance 2.6% 1.3±0.7 0.84 0.25 5.5% 1.9±1.0 0.91 0.33 11.7% 1.8±1.2 0.93 0.52
Q8 Intense emotional pain 10.7% 2.1±1.0 0.82 0.51 49.7% 3.4±1.0 0.88 0.75 26.8% 3.0±1.1 0.92 0.74
Q9 Difficulty with reintegration 9.3% 1.8±1.1 0.82 0.52 26.4% 2.7±1.2 0.89 0.67 17.6% 2.1±1.3 0.92 0.76
Q10 Emotional numbness 7.4% 1.5±1.0 0.82 0.50 16.6% 2.4±1.1 0.88 0.70 21.8% 2.4±1.2 0.92 0.76
Q11 Life is meaningless 16.3% 2.0±1.2 0.81 0.61 39.3% 3.1±1.1 0.88 0.76 18.8% 2.1±1.3 0.92 0.80
Q12 Intense loneliness 33.3% 2.8±1.3 0.81 0.61 51.5% 3.4±1.1 0.89 0.65 26.4% 2.5±1.3 0.92 0.76
GAD in the Yale data). Pearson’s correlation coefficients were Statistical analyses for the Yale, Utrecht and Oxford studies
used to determine stability of PGD and these other mental disor- were performed using SAS (version 9.4), R (version 3.6.2), and
ders between T1 and T2. SPSS (version 24), respectively.
Table 4 Concurrent and predictive validity of PG-13-R symptom score (excluding impairment)
PG-13-R symptom score (sum of 10 items) at T1
Concurrent (T1) outcome Predictive (T2) outcome
Yale Study N % OR p N % OR p
Post-traumatic stress disorder (PTSD) 270 1.5 1.23 0.007 48 2.1 n.e.
Major depressive disorder (MDD) 270 5.9 1.16 <0.001 48 4.2 n.e.
Generalized anxiety disorder (GAD) 270 3.3 1.24 <0.001 48 6.3 1.26 0.032
PTSD, MDD or GAD 270 8.1 1.18 <0.001 48 8.3 1.57 0.033
Yale Evaluation of Suicidality (YES): 269 17.5 1.18 <0.001 48 18.8 1.13 0.032
at least one positive response
Yale Study N mean±SD r p N mean±SD r p
SF-12: Physical functioning 269 5.1±1.3 –0.10 0.109 48 4.7±1.7 0.10 0.518
SF-12: Role-physical 270 3.5±0.8 –0.12 0.048 48 3.3±0.9 –0.05 0.715
SF-12: Bodily pain 270 4.5±0.9 –0.24 <0.001 48 4.4±1.0 –0.10 0.513
SF-12: General health 270 3.6±1.0 –0.25 <0.001 48 3.6±1.1 –0.21 0.162
SF-12: Vitality 270 2.6±1.3 –0.42 <0.001 48 2.4±1.3 –0.23 0.110
SF-12: Social functioning 270 4.3±1.0 –0.41 <0.001 48 4.4±1.0 –0.13 0.373
SF-12: Role-emotional 270 3.6±0.7 –0.45 <0.001 48 3.6±0.7 –0.42 0.003
SF-12: Mental health 270 7.4±2.0 –0.60 <0.001 48 7.3±2.1 –0.61 <0.001
Utrecht Study N mean±SD r p N mean±SD r p
PSS-SR 158 31.4±8.4 0.77 <0.001 85 26.3±6.5 0.68 <0.001
BDI-II 153 34.6±8.8 0.75 <0.001 82 31.1±7.8 0.53 <0.001
BDI-II: Suicidality (item 9) 161 1.2±0.4 0.34 <0.001 90 1.2±0.4 0.29 0.005
Oxford Study N mean±SD r p N mean±SD r p
PCL-5 239 23.5±17.8 0.78 <0.001 35 20.7±16.8 0.53 0.001
PHQ-9 239 8.9±7.1 0.68 <0.001 35 7.8±7.1 0.60 <0.001
PHQ-9: Suicidality (item 9) 239 0.4±0.8 0.52 <0.001 35 0.3±0.8 0.55 0.001
WSAS 237 12.8±9.4 0.77 <0.001 35 11.5±9.7 0.64 <0.001
OR – odds ratio, SF-12 – Medical Outcomes Short-Form-12, PSS-SR – PTSD Symptom Scale Self-Report, BDI-II – Beck Depression Inventory, PCL-5 – Post-
traumatic Stress Disorder Checklist for DSM-5, PHQ-9 – Patient Health Questionnaire-9, WSAS – Work and Social Adjustment Scale, n.e. – not estimated
OR – odds ratio, SF-12 – Medical Outcomes Short-Form-12, PSS-SR – PTSD Symptom Scale Self-Report, BDI-II – Beck Depression Inventory, PCL-5 – Post-
traumatic Stress Disorder Checklist for DSM-5, PHQ-9 – Patient Health Questionnaire-9, WSAS – Work and Social Adjustment Scale, n.e. – not estimated
RESULTS were infrequent in the Yale study, where mean scores in general
were low. Variances for most items across the datasets were rea-
Table 2 summarizes the demographic characteristics of the sonably high, confirming the scale’s discriminating ability.
three study samples. The Yale sample was older (mean age: Across studies, the PG-13-R symptom items cohered well
61.8±13.5 years) than the Utrecht (mean age: 56.2±13.3 years) (Cronbach’s alpha = 0.83 for Yale, 0.90 for Utrecht, 0.93 for the
and Oxford (mean age: 46.9±13.3 years) ones. All three samples Oxford study) (see Table 3). This analysis revealed that the dele-
were primarily female (73.0 to 79.1%), and most survived a death tion of the avoidance item in each of the three datasets resulted
from natural causes (compared to unnatural causes such as sui- in either the same or an improved overall Cronbach’s alpha (de-
cide or homicide or accidental) (>90%). The Yale and Oxford leted alpha = 0.84, 0.91, 0.93 for the Yale, Utrecht and Oxford,
samples had higher levels of educational attainment (college or respectively). Similarly, while all the other items had high item-
above >60%) than the Utrecht sample (college or above <40%). total correlations (r ≥ 0.50, 0.56 and 0.69 for the three datasets,
The mean scores for each PG-13-R symptom item at T1 are respectively), the avoidance item was an exception, with lower
presented in Table 3. They ranged from 1.3 to 2.9 in the Yale item-total correlations (r=0.25, 0.33, 0.52, respectively).
study; from 1.9 to 3.8 in the Utrecht study; and from 1.8 to 3.2 As illustrated in Figure 2, principal components factor analysis
in the Oxford study. In general, most item means were located in combination with parallel analysis for each dataset supported
around the center of the range, which is an indication of desira- the conclusion that the PG-13-R grief symptoms represent a uni-
ble variability. The avoidance (Q7) and preoccupation (Q4) items dimensional construct. In fact, in each dataset, a single factor
OR – odds ratio, SF-12 – Medical Outcomes Short-Form-12, PSS-SR – PTSD Symptom Scale Self-Report, BDI-II – Beck Depression Inventory, PCL-5 – Post-
traumatic Stress Disorder Checklist for DSM-5, PHQ-9 – Patient Health Questionnaire-9, WSAS – Work and Social Adjustment Scale, n.e. – not estimated
emerged whose eigenvalue was substantially larger than 1 and pa=0.89) study data, respectively. Overall, a symptom threshold
greater than would be expected by chance. This primary factor score of 30 optimized agreement with meeting DSM symptom
explained 40.3%, 53.5% and 61.8% of the variance in the Yale, criteria for PGD across the three datasets (kappa ≥0.70 across the
Utrecht and Oxford studies, respectively. datasets).
Results in Table 4 support the external validity of the PG-13-R Results in Table 5 illustrate that using a PG-13-R symptom
symptom score, not including the impairment item (Q13). PG- threshold score of 30 in combination with the impairment crite-
13-R symptom scores at T1 were significantly associated with rion demonstrated excellent external validity. The prevalence of
PTSD, MDD and/or GAD diagnoses or symptomatology and PGD using the PG-13-R score ≥30 at T1, including impairment,
suicidal ideation, both concurrently (p<0.001) and predictively was 6.3%, 16.6% and 11.3% for the Yale, Utrecht and Oxford
(p<0.05), in the Yale, Utrecht and Oxford data. PG-13-R symptom samples, respectively. The PG-13-R threshold-based diagnoses
scores were significantly associated with poorer role-emotional of PGD at T1 were significantly (p<0.05) associated with PTSD,
and mental health domains of quality of life both concurrently MDD and/or GAD diagnoses or symptomatology and suicidal-
and predictively in the Yale data (p<0.005), and with work and ity in the Yale, Utrecht and Oxford data, concurrently and pre-
social adjustment difficulties both concurrently and predictively dictively (except for suicidality in the Utrecht study, where the
in the Oxford data (p<0.001). association was significant only concurrently). PG-13-R thresh-
PG-13-R symptom threshold scores of 29, 32 and 30 maxi- old-based diagnoses of PGD were significantly associated with
mized agreement with meeting DSM symptom criteria for PGD poorer role-emotional and mental health domains of quality of
in the Yale (kappa=0.77), Utrecht (kappa=0.86), and Oxford (kap- life both concurrently and predictively in the Yale data (p<0.05),