Evidence of the clinical utility of a prolonged grief disorder diagnosis

A substantial body of research has shown that prolonged grief disorder (PGD), characterized by persistent and severe separation distress, constitutes a disorder distinct from bereavement‐related major depressive disorder (MDD) and post‐traumatic stress disorder (PTSD)1. Reviewing the available evidence, the work group covering the Disorders Specifically Associated With Stress section in the ICD‐11 decided to slate PGD for inclusion as a new stress response syndrome2. Still, mental health professionals and laypersons have expressed concerns that diagnosing PGD represents a “medicalization” of normal grief reactions3. Fears of the overdiagnosis of normal responses remain4, 5, 6.

As a new disorder, it is of paramount importance to determine whether PGD is a clinically useful diagnosis. According to First7, a mental disorder or diagnostic system has clinical utility if it: a) helps communication, b) facilitates effective interventions, c) predicts management needs and outcomes, and d) differentiates disorder from non‐disorder and comorbid disorders. Whereas a large body of evidence has demonstrated the construct, predictive and incremental validity of PGD, clinicians' perceptions of its clinical utility have yet to be tested experimentally.

To address this gap, our group recently completed a two‐phase National Institute of Mental Health (NIMH)‐funded randomized controlled trial in the US that evaluated the clinical utility of PGD by examining the impact of providing information about the diagnosis on clinicians' ability to differentially diagnose PGD in “virtual standardized patients” (VSPs). The use of VSPs allowed us to standardize clinical presentations, control influential confounding variables and patient characteristics, and avoid burdening bereaved participants. Using VSPs (rather than written vignettes or clinicians selecting their own patients8, as has been done in prior studies) increased the external validity of this investigation.

In Phase 1 of the study, video‐recorded case vignettes for the VSPs were developed with the input of seven bereavement experts. They reflected cases of PGD, normative grief not meeting criteria for PGD, MDD, and PTSD. Four blinded, expert diagnosticians were asked to review the VSPs and evaluate the cases to establish “gold” or “criterion” standard diagnoses. There was full agreement on 12 of the cases, which were included in Phase 2 of the study.

In Phase 2, clinicians (N=120 completers) were randomized to receive written information about PGD (informed) or not (not informed). Participants were asked about their background and experience working with the bereaved, and were invited to provide a diagnosis and treatment recommendations for four VSPs depicting normative grief, PGD, MDD and/or PTSD. Participants were also surveyed about PGD's clinical utility. Participants included psychiatrists (17%), psychologists (27%), social workers (43%), and other licensed clinicians (13%). They were 76% female and 66% White.

We found that clinicians provided with information about PGD, compared to those not receiving such information, were 4.5 times more likely to diagnose PGD accurately. There were no significant group differences in the likelihood of clinicians accurately diagnosing normative grief, MDD or PTSD, but there were significant between‐group differences in treatment recommendations for PGD cases. Clinical utility ratings of the PGD diagnostic criteria were high, with the majority of clinicians rating those criteria as easy to use (97%) and overall clinically useful (95%).

There has been significant concern that introducing a diagnosis of prolonged grief would increase the likelihood that clinicians will medicalize or pathologize grief4, 5, 6. We found, however, that mental health providers who received information about PGD were no more likely to pathologize normative grief than those who did not receive this information in advance of evaluating standardized patients. Furthermore, clinicians who correctly diagnosed PGD were shown to be less likely to recommend antidepressants for individuals they accurately diagnosed with PGD and more likely to recommend psychotherapies that have direct relevance to PGD symptoms, such as disbelief (emotion‐focused therapy), loss of meaning (existential therapy), and persistent suffering (acceptance and commitment therapy). This may reflect clinicians' perception that PGD is less biologically based than, for example, MDD. Although, like the DSM, the PGD tutorial did not offer treatment recommendations, it did describe risk factors that were psychological in nature, which may have affected the recommendations made.

This study also suggests the clinical value of using straightforward diagnostic criteria to distinguish pathological grief from other clinical presentations. The proposed PGD criteria are highly specific, which should reduce the risk of pathologizing normative grief reactions1. At the same time, they are sufficiently sensitive to capture those in need1. Under‐recognition of PGD and misclassifying it as another diagnosis is likely to lead to suboptimal treatment. PGD improves when specific interventions, such as those recommended by the study participants, target unique pathological grief symptoms9. The misdiagnosis of PGD as MDD or PTSD may promote the use of inappropriate interventions.

Although this study was limited by a relatively small sample size and by the biases inherent in those who chose to participate, it demonstrates that PGD is perceived and shown to be clinically useful. We therefore believe that educating clinicians about PGD is likely to improve their ability to distinguish normal from pathological grief; to enhance communication between clinicians, patients, and their families; and to assist in the delivery of effective treatments for PGD7.

The authors would like to thank the experts who reviewed the VSP scripts, including N. Alston, P. Boelen, J.A. García‐García, A. Ghesquiere, A. Papa and S. Schachter. They are also indebted to misterBIT for developing the online study platform and to the mental health providers who gave their time to this study. This research was supported by the NIMH grant R21MH095378 and National Cancer Institute grants R35CA197730, K07CA172216 and P30CA008748.