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Bereavement due to cancer increases the risk of prolonged grief disorder. However, specialized treatment options for prolonged grief after a loss due to illness are still scarce.
The aim of this study is to extend previous findings by evaluating a web-based cognitive behavioral intervention with asynchronous therapist support, consisting of structured writing tasks adapted specifically for prolonged grief after cancer bereavement.
The intervention was evaluated in a purely web-based randomized waitlist-controlled trial. Open-access recruitment of participants was conducted on the web. Prolonged grief (Inventory of Complicated Grief), depression, anxiety, posttraumatic stress, posttraumatic growth, somatization, sleep quality, and mental and physical health were assessed on the web via validated self-report measures.
A total of 87 participants were randomized into the intervention group (IG; 44/87, 51%) or the waitlist control group (43/87, 49%). Of the participants, 7% (6/87) dropped out of the study (5/44, 11%, in the IG). Of the 39 completers in the IG, 37 (95%) completed all intervention tasks. The intervention reduced symptoms of prolonged grief (intention-to-treat:
The web-based intervention for prolonged grief after cancer bereavement is effective in reducing symptoms of prolonged grief disorder and accompanying syndromes in a timely, easily realizable manner and addresses specific challenges of bereavement to illness. Considering web-based approaches in future mental health care policy and practice can reduce health care gaps for those who are bereaved to cancer.
German Clinical Trial Register U1111–1186-6255; https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00011001
The loss of a loved one initiates a grief reaction, which is considered normal and healthy and enables adjustment to the loss and coping with new life realities. Although a normal grief reaction can be accompanied by significant emotional distress, the intensity of grief often decreases over a period that varies from culture to culture [
Pathological grief is included in the Diagnostic and Statistical Manual of Mental Disorders as persistent complex bereavement disorder (a diagnosis requiring further research) [
A loss due to illness may cause specific additional strains for the bereaved, which increases the risk of developing PGD. Bereavement due to cancer has been identified as a risk factor for PGD [
Interventions targeting PGD have been proven effective [
Internet-based treatments offer an effective, flexible, and more anonymous approach for addressing mental health issues [
Asynchronous web-based interventions that use cognitive behavioral techniques and rely on structured writing tasks and therapist feedback have proven effective in reducing syndromes such as prolonged grief, posttraumatic stress, or anxiety in the past (eg, the studies by Hedman et al [
An asynchronous web-based intervention designed for the treatment of posttraumatic stress and PGD [
The evaluation of the web-based cognitive behavioral therapy intervention for prolonged grief after bereavement due to cancer took place in a randomized waitlist-controlled trial. The primary outcome measure was prolonged grief. Prerandomization measurement points were screening (T-1) and baseline (T0), and postrandomization measurement points were posttreatment (T1) and follow-up (T2-T4).
The study was registered with the German Clinical Trial Register (Universal Trial Number U1111–1186-6255) and approved by the University of Leipzig Ethics Committee (no 450–15-21,122,015, January 20, 2017). The study was conducted in 2 waves with recruitment from November 2017 to April 2018 and from May 2018 to June 2019. The first wave was funded by
Individuals were eligible as participants if they:
Were bereaved to hematological cancer (first wave) or any type of cancer (second wave),
Reached a score of >25 on the Inventory of Complicated Grief (ICG) [
Were ≥18 years, and
Were fluent in the German language and had sufficiently stable web access.
The exclusion criteria were as follows:
Current psychotherapy or change in psychopharmacological therapy within the last 6 weeks,
Cognitive or physical impairment that would impede treatment participation, and
Severe depression (Patient Health Questionnaire 9 [PHQ-9]; [
Open-access recruitment was carried out from November 2017 to June 2019 via social networks, relevant websites, and stakeholders such as support groups, clinics, medical practices, charities, and insurance companies. Study information forms were presented on the website and again upon inclusion. Participants could apply for the study by taking the open-access web-based screening questionnaire (T-1) (see the study protocol by Hoffmann et al [
Measures to prevent multiple identities were informed consent forms, email confirmations, and phone calls. Participants did not pay for the intervention; neither were they paid.
The participant timeline is depicted in
Participant flow. FU: follow-up; ICG: Inventory of Complicated Grief; PTSD: posttraumatic stress disorder.
Randomization was conducted with the software
The intervention
The structured writing tasks are organized into three modules (
Intervention overview.
Phase and week | Procedurea | ||||||
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Pretask monitoring | Task | Posttask monitoring | ||||
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SAMb | 1 | SAM | |||
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SAM and PHQ-9c | 2 | SAM | |||
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SAM | 3 | SAM | |||
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SAM and PHQ-9 | 4 | SAM and WAI-Sd | |||
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SAM | 5 | SAM | |||
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SAM and PHQ-9 | 6 | SAM | |||
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SAM | 7 | SAM | |||
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SAM and PHQ-9 | 8 | SAM and WAI-S | |||
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SAM | 9 | SAM | |||
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SAM and PHQ-9 | 10 | SAM and WAI-S |
aAt the end of every week, thorough therapist feedback was provided.
bSAM: Self-assessment Manikin.
cPHQ-9: Patient Health Questionnaire-9.
dWAI-S: Working Alliance Inventory–Short Form.
In the first module,
In the second module,
In the third module,
Instructions for all modules as well as psychoeducational material were standardized, and therapist feedback was highly structured but could be adapted to a specific patient’s situation.
The patient’s mood (Self-assessment Manikin [
A detailed account of all measurement tools can be found in Hoffmann et al [
This study examines the primary outcome of prolonged grief, as measured using the German version of the ICG [
The 19 original items of the ICG were augmented by 3 additional items adapted from Xiu et al [
Further secondary outcomes were depression (PHQ-9 [
All statistical analyses were performed using R (R Foundation for Statistical Computing) [
Descriptive analyses were used to provide means (SDs) or percentages of relevant variables. To test for baseline differences between treatment groups, between completers and dropouts, and between waves, 2-tailed
The efficacy of the intervention was examined using linear mixed models for primary and secondary outcomes. This method allows for an intention-to-treat analysis under the assumption that data are missing at random. A restricted maximum-likelihood algorithm was applied. Analyses were performed in 2 steps. First, the appropriate base model was chosen by comparing the fit (Akaike information criterion and Bayesian information criterion) of three base models via analysis of variance: the unconditional means model (no random effects), random intercept model (unconditional growth model), and random intercept and random slope model. Second, fixed effects were added to the base model with the best fit to examine the effects of time, group, and time×group. Significance was assessed using
Additional analyses were carried out for the primary outcome (ICG) as follows:
In addition to the intention-to-treat analysis, a completer analysis was conducted using a linear mixed model.
To test for differences in symptom trajectories across waves, a separate linear mixed model was run with wave×time as an additional fixed effect.
The clinical significance of the change in ICG scores was evaluated using three metrics: (1) The reliable change index (RCI) [
An analysis of follow-up data (T2-T4) was conducted with a linear mixed model with time as a factor (postintervention vs 3-month follow-up vs 6-month follow-up vs 12-month follow-up). The model included both the treatment groups.
A total of 222 persons completed the screening questionnaire, 89 (40.1%) of whom fulfilled the eligibility criteria and provided informed consent. The baseline questionnaire was completed by 87 participants, who were randomized into the IG (44/87, 51%) or the WCG (43/87, 49%). Participant flow is depicted in
Participants were on average 47.32 (SD 14.01) years old, and 83% (72/87) were female. Approximately half of the participants (42/87, 48%) were in a relationship, and 49% (43/87) had children (mean number of children, if any, 1.86, SD 1.17). Most participants had high (60/87, 69%) or intermediate (21/87, 24%) levels of education.
Participants were most often bereaved of their parents (41/87, 47%), spouses (30/87, 34%), or children (9/87, 10%), and reported a very close relationship with the deceased (mean 4.93, SD 0.30; on a scale of 1 [not close at all] to 5 [very close]). The death occurred on average 28.73 months (2.4 years) ago (SD 40.3, median 16.93 months, or 1.4 years). The most commonly reported cancer types among the deceased were leukemia (8/21, 38%) and lymphoma (6/21, 29%) in the first wave and cancer of the respiratory and chest organs (16/66, 24%) and digestive organs (13/66, 20%) in the second wave.
On average, participants reported an intensity of prolonged grief of meantotal 37.94 (SDtotal 10.27; meanIG 38.98, SDIG 9.87; meanWCG 36.88, SDWCG 10.67;
The participants were assessed for secondary syndromes. Of all participants, 54% (47/87) scored above the threshold for at least moderate depression on the PHQ-9 (≥10), 39% (34/87) showed at least moderate anxiety (≥10), 17% (15/87) scored above the cut-off for likely posttraumatic stress disorder on the IES-R (>0), 44% (38/87) showed at least moderate somatization (≥10), and 32% (28/87) displayed severe sleep problems (>10). Overall, 76% (66/87) of the participants surpassed at least one of these thresholds. Of all participants, 86% (75/87) scored below the 20th percentile on the 12-item Short-Form Health Survey for mental health, whereas 35% (30/87) fell below the 20th percentile for physical health [
The treatment groups did not differ in sociodemographic variables, characteristics of the loss, or baseline mental health (
After randomization, 7% (6/87) of participants (5/44, 11% in the IG, 1/43, 2% in the WCG) dropped out of the study (ie, did not provide posttreatment data). Dropouts were exclusively female or nonbinary (
Participants recruited in the 2 waves did not differ, except for expected differences in the cause of loss (
Demographic and clinical characteristics of the study sample at baseline.
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Total (N=87) | Intervention group (n=44) | WCGa (n=43) | |||||||||
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Age (years), mean (SD) | 47.32 (14.01) | 47.80 (13.39) | 46.84 (14.76) | .75 | |||||||
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.61 | ||||||||||
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Female | 72 (83) | 36 (82) | 36 (84) |
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Male | 14 (16) | 7 (16) | 7 (16) |
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Other | 1 (1) | 1 (2) | 0 (0) |
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Relationship (yes), n (%) | 42 (48) | 19 (43) | 23 (54) | .45 | |||||||
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Has children (yes), n (%) | 43 (49) | 21 (47) | 22 (51) | .92 | |||||||
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Number of children (if any), mean (SD) | 1.86 (1.17) | 1.71 (0.9) | 2 (1.38) | .43 | |||||||
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.90 | ||||||||||
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Low | 6 (7) | 4 (9) | 2 (5) |
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Intermediate | 21 (24) | 11 (25) | 10 (23) |
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High | 60 (69) | 29 (66) | 31 (69) |
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Time since loss (months), mean (SD) | 28.73 (40.3) | 31.91 (50.65) | 25.47 (26.02) | .46 | |||||||
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.86 | ||||||||||
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Parent | 41 (47) | 21 (48) | 20 (47) |
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Child | 9 (10) | 3 (7) | 6 (14) |
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Spouse | 30 (35) | 16 (36) | 14 (33) |
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Sibling | 3 (3) | 2 (5) | 1 (2) |
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Other | 4 (5) | 2 (5) | 2 (5) |
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.45 | ||||||||||
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Female | 43 (49) | 24 (55) | 19 (44) |
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Male | 44 (51) | 20 (45) | 24 (56) |
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Other | 0 (0) | 0 (0) | 0 (0) |
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Closeness to the deceased, mean (SD) | 4.93 (0.30) | 4.98 (0.15) | 4.88 (0.39) | .15 | |||||||
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.94 | ||||||||||
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31 (36) | 17 (39) | 14 (33) |
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Leukemia | 10 (12) | 5 (11) | 5 (12) |
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Lymphoma | 7 (8) | 3 (7) | 4 (9) |
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Plasmacytoma | 6 (7) | 4 (9) | 2 (5) |
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Other hematological | 8 (9) | 5 (11) | 3 (7) |
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56 (64) | 27 (61) | 29 (67) |
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Respiratory and chest organs | 16 (18) | 9 (21) | 7 (16) |
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Digestive tract | 13 (15) | 5 (11) | 8 (19) |
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Breast | 6 (7) | 2 (5) | 4 (9) |
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Central nervous system and eyes | 6 (7) | 3 (7) | 3 (7) |
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Urinary tract | 3 (3) | 1 (2) | 2 (5) |
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Other | 12 (14) | 7 (16) | 5 (12) |
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Prolonged grief | 37.94 (10.27) | 38.98 (9.87) | 36.88 (10.67) | .35 | |||||||
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Depression | 10.72 (5.33) | 10.77 (5.08) | 10.67 (5.63) | .93 | |||||||
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Anxiety | 8.39 (4.45) | 8.68 (4.31) | 8.09 (4.62) | .54 | |||||||
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Posttraumatic stress | −0.83 (0.83) | −0.87 (0.83) | −0.80 (0.84) | .70 | |||||||
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Posttraumatic growth | 64.84 (18.13) | 60.23 (18.3) | 69.56 (16.89) | .02 | |||||||
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Somatization | 10.11 (4.51) | 10.54 (4.66) | 9.67 (4.36) | .37 | |||||||
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Sleep quality | 8.90 (3.71) | 8.70 (3.54) | 9.09 (3.91) | .62 | |||||||
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Physical health | 47.78 (10.13) | 46.46 (10.66) | 49.14 (9.5) | .22 | |||||||
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Mental health | 33.12 (9.44) | 32.51 (8.63) | 33.74 (10.26) | .55 |
aWCG: waitlist control group.
bGroup difference.
Baseline and posttreatment sum scores of prolonged grief measured with the ICG were used as outcomes of 3 base models (unconditional means, random intercept, random slope, and intercept), the fit of which was then compared via analysis of variance. A random intercept model provided the best fit (
A significant group×time interaction effect indicated that prolonged grief decreased from baseline to posttreatment to a larger extent in the IG than in the WCG (
Separate random intercept models for each treatment group revealed a significant effect of time within the IG (
A random intercept model with inclusion of completers only revealed results similar to the intention-to-treat analysis (time×group interaction:
A random intercept model with the intention-to-treat sample and inclusion of wave×time as a fixed effect did not lead to an increase in model fit (
According to the RCI, 44% (17/39) of the IG and 2% (1/42) of the WCG displayed clinically significant improvements in the ICG from baseline to posttreatment (
Follow-up analysis showed that ICG scores directly after the intervention and at 3, 6, and 12 months after the intervention differed (
Results of mixed model analyses (intention-to-treat, N=87).
Outcome | Pre, mean (SD) | Post, mean (SD) | Within-group effects of time | Interaction effects (time×group) | ||||||||||||||||||
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Cohen |
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40.7 (1,80.4) | <.001 | 0.34 (0.20 to 0.46) | 0.80 (0.35 to 1.25) | |||||||||||||||||
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WCGc | 36.9 (10.7) | 36.0 (10.8) | 0.9 (1,41.1) | .34 |
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IGd | 39.0 (9.9) | 27.5 (10.4) | 58.9 (1, 39.8) | <.001 |
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44.4 (1,80.4) | <.001 | 0.36 (0.22 to 0.47) | 0.84 (0.38 to 1.29) | |||||||||||||||||
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WCG | 42.4 (12.3) | 41.5 (12.6) | 0.8 (1,41.1) | .38 |
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IG | 44.7 (11.5) | 31.3 (11.9) | 58.7 (1,39.6) | <.001 |
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21.0 (1,79.6) | <.001 | 0.21 (0.09 to 33) | 0.69 (0.23 to 1.13) | |||||||||||||||||
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WCG | 10.7 (5.6) | 9.4 (4.8) | 4.4 (1,40.2) | .04 |
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IG | 10.8 (5.1) | 6.4 (3.9) | 44.7 (1,39.8) | <.001 |
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8.7 (1,80.4) | .004 | 0.10 (0.02 to 0.21) | 0.43 (−0.01 to 0.88) | |||||||||||||||||
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WCG | 8.1 (4.6) | 7.4 (3.9) | 0.8 (1,40.5) | .39 |
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IG | 8.7 (4.3) | 5.9 (3.1) | 20.6 (1,40.3) | <.001 |
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9.1 (1,80.4) | .003 | 0.10 (0.02 to 0.22) | 0.65 (0.20 to 1.10) | |||||||||||||||||
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WCG | −0.8 (0.8) | −1.0 (0.8) | 5.4 (1,40.3) | .03 |
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IG | −0.9 (0.8) | −1.6 (0.8) | 21.1 (1,40.6) | <.001 |
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24.6 (1,79.7) | <.001 | 0.24 (0.11 to 0.36) | −0.29 (−0.73 to 0.15) | |||||||||||||||||
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WCG | 69.6 (16.9) | 70.6 (16.7) | 0.1 (1,40.4) | .75 |
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IG | 60.2 (18.3) | 76.1 (21.0) | 42.4 (1,39.2) | <.001 |
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1.9 (1,79.4) | .17 | 0.02 (0.00 to 10) | −0.03 (−0.47 to 0.41) | |||||||||||||||||
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WCG | 9.7 (4.4) | 8.5 (3.7) | 4.9 (1,40.4) | .03 |
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IG | 10.5 (4.7) | 8.6 (4.8) | 13.2 (1,39.0) | <.001 |
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0.02 (1,77.7) | .90 | 0.00 (0.00 to 0.02) | −0.01 (−0.46 to 0.43) | |||||||||||||||||
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WCG | 9.1 (3.9) | 8.5 (3.6) | 0.7 (1,39.7) | .41 |
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IG | 8.7 (3.5) | 8.6 (3.8) | 0.3 (1,38.1) | .58 |
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0.1 (1,79.6) | .77 | 0.00 (0.00 to 0.04) | 0.23 (−0.21 to 0.67) | |||||||||||||||||
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WCG | 49.1 (9.5) | 49.5 (8.1) | 0.0 (1,40.4) | .95 |
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IG | 46.5 (10.7) | 47.5 (9.7) | 0.2 (1,39.2) | .66 |
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8.6 (1,80.8) | .004 | 0.10 (0.02 to 0.21) | −0.44 (−0.89 to 0.00) | |||||||||||||||||
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WCG | 33.7 (10.3) | 34.8 (11.3) | 0.4 (1,40.4) | .53 |
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IG | 32.5 (8.6) | 39.3 (8.8) | 15.4 (1,41.2) | <.001 |
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aValues of
bICG: Inventory of Complicated Grief.
cWCG: waitlist control group.
dIG: intervention group.
eICGa: augmented version of Inventory of Complicated Grief.
fPHQ-9: Patient Health Questionnaire-9.
gGAD-7: Generalized Anxiety Disorder-7 scale.
hIES-R: Impact of Event Scale–Revised.
iPGI: Posttraumatic Growth Inventory.
jPHQ-15: Patient Health Questionnaire-15.
kPSQI: Pittsburgh Sleep Quality Index.
lSF-12: 12-item Short Form Health Survey.
Prolonged grief as measured with the augmented version of the ICG, depression, anxiety, posttraumatic stress, somatization, mental and physical health, sleep quality, and posttraumatic growth were examined as secondary outcomes (
In light of unmet mental health care needs among those bereaved by cancer, we adapted and evaluated a web-based intervention for PGD after cancer bereavement. Specifically, the intervention was designed to address the traumatic nature of the time of illness as well as difficulties in the bereavement phase. It exceeds the scope of previously evaluated web-based interventions for relatives of patients with cancer. The intervention proved effective in reducing symptoms of PGD to a clinically significant extent compared with a WCG.
A total of 87 participants were included and randomized. With 6 participants dropping out, 81 completed the posttreatment measurement. The dropout rate of 7% is in line with previous studies on web-based interventions for grief [
With 76% of participants exceeding cut-offs for at least one secondary syndrome, and 86% scoring below the 20th percentile for mental health, our sample displayed considerable impairment before treatment, which illustrates the necessity of an accessible intervention.
A linear mixed model was used to examine the intervention’s efficacy and revealed a significant interaction effect, indicating a greater decrease in PGD symptoms (ICG) in the IG than in the WCG. This effect proved robust in a completer analysis and in an analysis including the augmented version of the ICG with 3 additional items that reflect specifics of the ICD-11 criteria [
Small to moderate effects were found for depression, anxiety, posttraumatic stress, posttraumatic growth, and mental health. This shows that the intervention is suitable not only to decrease PGD but also to ameliorate accompanying syndromes and overall mental health. Some modules of the intervention are well suited to address syndromes besides PGD. Especially, (1) the module
We argue that this study is methodologically suitable for examining the effectiveness of a web-based intervention for PGD. However, some methodological aspects merit discussion.
As stated in the study protocol [
This study was conducted in 2 waves, with the second wave’s (May 2018 to June 2019) inclusion criteria concerning the cause of bereavement being more liberal than the first wave’s (November 2017 to April 2018). However, participants of both waves displayed similar amounts of distress, were from similar socioeconomic backgrounds, and had similar characteristics of their loss. Moreover, the PGD trajectories did not differ between the waves. Therefore, we deemed the groups homogeneous enough to be included in the joint analysis.
Treatment groups were considered mostly equal, as they differed only in that the WCG had more favorable values for posttraumatic growth at baseline than the IG. This may, to some extent, weaken the interpretability of the results concerning posttraumatic growth.
Females were overrepresented in this study, as is the case in many previous studies on web-based interventions [
This study relied on web-based self-report measures to assess the primary and secondary outcomes. Although the use of interviews would have provided added validity, our questionnaires comprised instruments that were designed and validated for administration as self-report assessments. Therefore, we deemed our assessments to be adequately valid.
Future research may examine the differential effects of the treatment modules used in this study, the role of therapist support, and the long-term effects of web-based interventions, especially in comparison with face-to-face approaches. In addition, it might be fruitful to explore the acceptability and effectiveness of web-based grief interventions when blended into existing health care structures (eg, primary care) and to examine economic aspects such as cost-effectiveness.
PGD has significant ramifications for individuals and society. As it has only recently been acknowledged as a mental illness, specialized treatment options are still scarce. A low-threshold, acceptable, and effective web-based intervention may reduce treatment barriers and improve the mental health care situation of those affected.
Our results extend previous findings by providing evidence for the efficacy of a web-based intervention that was specifically adapted for persons bereaved because of cancer. It proved effective in decreasing the symptoms of PGD and accompanying syndromes to a clinically significant extent in a relatively short treatment duration of 5 weeks. It addresses specific issues of cancer bereavement, such as traumatic aspects of the time of illness, preloss grief, and preparedness, and provides low-threshold access to specialized grief therapy. Therefore, it is suitable to reduce the treatment gap for those with PGD after a loss due to illness.
Alternatives and complements to conventional face-to-face psychotherapy are needed, as illustrated by the increased demand for remote treatment options during the COVID-19-pandemic. Web-based approaches should therefore be considered in future mental health care policies and practices.
Demographic and clinical characteristics of the study sample at baseline by dropout status and study wave.
CONSORT-eHEALTH checklist (V 1.6.1).
International Classification of Diseases
Inventory of Complicated Grief
Impact of Event Scale–Revised
intervention group
prolonged grief disorder
Patient Health Questionnaire 9
reliable change index
waitlist control group
This work was partially funded by Deutsche
We thank Prof Dr Anja Mehnert-Theuerkauf for her contribution to the conception of the study design, funding acquisition, and the provision of resources for participant recruitment.
AK, MN, and KL designed the study and acquired the funding. JK, RH, and MN administered the project, which was supervised by AK. JK conducted statistical analyses. The manuscript was prepared by JK, with review and consultation by MN, RH, and KL. AK reviewed and edited the manuscript. All authors have contributed to and approved the final manuscript.
None declared.