Abstract
Context:
Dignity Therapy (DT) is a well-researched psychotherapeutic intervention but it remains unclear whether symptom burden or religious/spiritual (R/S) struggles moderate DT outcomes.
Objective:
To explore the effects of symptom burden and R/S struggles on DT outcomes.
Methods:
This analysis was the secondary aim of a randomized controlled trial that employed a stepped-wedge design and included 579 participants with cancer, recruited from six sites across the United States. Participants were ages 55 years and older, 59% female, 22% race other than White, and receiving outpatient specialty palliative care. Outcome measures included the 7-Item Dignity Impact Scale (DIS), and QUAL-E subscales (preparation for death; life completion); distress measures were the Edmonton Symptom Assessment Scale (ESAS-r) (symptom burden), and the Religious Spiritual Struggle Scale (RSS-14; R/S).
Results:
DT effects on DIS were significant for patients with both low (p=.03) and moderate/high symptom burden (p=.001). They were significant for patients with low (p=.004) but not high R/S struggle (p=.10). Moderation effects of symptom burden (p=.054) and R/S struggle (p=.52) on DIS were not significant. DT effects on preparation and completion were not significant, neither were the moderation effects of the two distress measures.
Conclusion:
Neither baseline symptom burden nor R/S struggle significantly moderated the effect of DT on DIS in this sample. Further study is warranted including exploration of other moderation models and development of measures sensitive to effects of DT and other end-of-life psychotherapeutic interventions.
Keywords: Dignity Therapy, Palliative Care, Symptom Burden, Religious/Spiritual Struggle, Cancer
Introduction
Dignity Therapy (DT), a well-researched brief psychotherapy, aims to help patients with life-threatening illness enhance self-continuity and coherence by creating legacy, maintaining integrity, finding spiritual and existential comfort, and making meaning of their lives.(1–3) Findings of DT’s efficacy on patients’ distressing physical, emotional, or spiritual symptoms of life-threatening illness, however, have been inconsistent.(4,5) In some studies of DT, investigators noted low levels of distress in their recruited samples.(5–7) Such low levels of pre-intervention distress, also known as floor effects, limit the measurable effect of an intervention such as DT on those distress outcomes.(8,9) In contrast, DT effects were statistically significant in patients with high symptom distress.(10) From the prior research, however, it is unknown if the level of distress moderates the effect of DT on primary outcomes.
The aim of this study was to examine the effects of baseline distress, specifically physical/emotional symptoms (symptom burden) and religious/spiritual (R/S) struggle, for their possible moderating influence on the effects of DT on primary (dignity impact) and secondary (existential tasks) outcomes. We hypothesized that symptom burden and R/S struggle would significantly affect DT intervention effects.
Methods
Design.
This planned analysis is the secondary aim from a six-site randomized controlled trial (RCT) with a stepped-wedge design (Figure 1).(11) In the RCT, we compared effects of usual outpatient specialty palliative care (usual care) and DT plus usual care (DT) on patient outcomes. We found significant main effects of DT on dignity impact but not existential tasks.(12) Details of the RCT are reported elsewhere.(12, 13, 14) The Institutional Review Board at each site approved the study (clinicaltrials.gov: NCT03209440).
Figure 1.
Actual study accrual by site and step for the step-wedge design (2017 – 2021).
© 2023, Dignity Therapy Investigators, reprinted with permission.
Setting/Sample.
Four National Cancer Institute designated cancer centers and two academic cancer centers across the United States participated in this study. Study inclusion criteria required that the patient (1) had any type or stage of cancer, (2) was receiving outpatient specialty palliative care, (3) was age 55 years or older, (4) was able to speak/read English, and (5) was physically able to complete the study (Palliative Performance Scale >50).(15–17) Patients were excluded if they were: (1) legally blind, (2) cognitively unable to complete study measures (Mini Mental Status Exam <24(18) in steps 1–3 or unable to spell ‘world’ backwards in step 4), (3) diagnosed with a history of psychotic illness, or (4) enrolled in a similar intervention study. The study focus on patients with cancer 55 years of age or older was responsive to PA-13–354/NOT-CA-14-016, the funding mechanism for the study.
Procedure.
Figure 2 shows the study procedures over the 4 to 6-week study period for each patient. Further details about the study procedures are available in other reports.(12,13) Our initial plan to recruit half the sample among patients with low and half with high distress was challenging; ultimately we did not exclude any patients based on pre-intervention distress. During step 4, all study procedures were conducted virtually via telephone or video conference (Zoom) for safety during the COVID-19 pandemic.
Figure 2.
Flow of each patient through the study procedures.
© 2023, Dignity Therapy Investigators, reprinted with permission.
Intervention.
Usual outpatient specialty palliative care was provided by physicians, nurse practitioners, social workers, and clinic nurses. None of the palliative care clinics routinely included chaplain support, but as-needed chaplaincy was available. Study sites were randomized to DT provided by nurses or chaplains. DT delivered by both nurses and chaplains was associated with statistically significantly higher post-intervention DIS scores compared to usual care.(12) We combined the data from both intervention groups for the present analysis.
The DT intervention followed Chochinov’s manualized guide(2) and involved four contacts with the patient, following a set process. The standardized approach to delivery of the intervention facilitated a personal process of reflection and recognition that allowed the patient to make meaning of their experience. As described elsewhere,(19) Dr. Chochinov, who developed DT, provided standardized 2-day training for the study chaplains and nurses at a study site before the site stepped up to the intervention (via Zoom for step 4). Intervention fidelity was monitored for 219 transcripts with the DT Adherence Form (20); 93% had a fidelity score ≥80%.
Measures.
The primary outcome was dignity impact. Measures of existential tasks were secondary outcomes.
Dignity Impact.
The 7-item Dignity Impact Scale (DIS)(21) addressed the concept of dignity(5). For example, they asked whether care in the past month had increased one’s “sense of dignity,” or helped one “feel that life was more meaningful.” The items are scored on a 5-point scale from ‘strongly disagree’ (1) to ‘strongly agree’(5). Scores could range from 7–35 and in a prior study showed sensitivity to DT effects at follow-up with an effect size of 0.7.(5) In the current study, the Cronbach’s α was .80 at baseline and .83 at follow-up.
Existential Tasks were measured with the QUAL-E preparation for death and life completion subscales.(22) The 4-item preparation subscale assesses an individual’s sense of integrity and concerns about being a burden to significant others. The 7-item completion subscale assesses an individual’s sense of meaning and peace, as well as any unfinished interpersonal business. The items are rated on a 5-point scale from ‘not at all true for me’ (1) to ‘completely true for me’ (5). Preparation subscale items are reverse scored. Both subscales have demonstrated good reliability and validity.(22)
Measures of Distress
The Edmonton Symptom Assessment Scale (ESAS-r) was our measure of symptom burden.(23) The ESAS-r is a well-validated and widely used instrument to assess 9 common physical and emotional symptoms (e.g., pain, fatigue, loss of appetite, anxiety, depression) in palliative care patients.(23, 24) Each symptom is rated from 0 “no symptoms” to 10 “worst possible symptoms”. Investigators have used a variety of cutpoints to identify moderate or severe symptom intensity for different ESAS items.(25) A systematic review described a score of 4 or greater as the cutpoint most commonly used in clinical practice.(26) Following this guideline, we created an average of the 9 symptoms and then dichotomized those scores into low (< 4) and moderate/high (≥ 4) symptom burden groups.
The Religious Spiritual Struggle Scale (RSS-14) was our measure of spiritual distress.(27) This 14-item scale assesses six domains of religious/spiritual (R/S) struggles: divine (negative emotion centered on beliefs about God or a perceived relationship with God), demonic (concern that the devil or evil spirits are attacking an individual or causing negative events), inter-personal (concern about negative experiences with religious people or institutions; interpersonal conflict around religious issues), moral (wrestling with attempts to follow moral principles; worry or guilt about perceived offenses by the self), doubt (feeling troubled by doubts or questions about one’s R/S beliefs), and ultimate meaning (questions about the deeper meaning of one’s life). Questions are rated on a 5-point Likert scale from not at all/NA to “a great deal” (0–4, total range of 0–56). Following Damen and colleagues,(28) we created a dichotomous measure with those who selected “quite a bit” or “a great deal” for one or more items categorized as moderate/high R/S struggle and all others as low.
Analysis.
Data were imported into statistical software R for analysis. We performed intent-to-treat analysis, where all patients that completed the baseline were included in the analysis. For missing data processing, we utilized multiple imputation to generate multiple completed datasets upon which inferences were performed and then aggregated. The amount of missing data was small at baseline (2%) and at follow-up (2%) for patients that completed the follow-up. The main source of missing data was patients lost to follow up (22%) due to declining health or death. We obtained descriptive statistics for demographic and outcome variables. We utilized mixed-effect regression models with random effect terms to account for between-site differences. We also included steps in our model to account for potential change over time. To estimate the effects of DT intervention on an outcome variable at follow-up, we adjusted for the baseline value of the corresponding outcome. To examine the effect of patient distress at baseline on the effects of DT intervention, we estimated the DT intervention effect for patients with low distress and those with moderate/high distress separately and also reported the observed significance level of the interaction of the DT group assignment with distress (low versus moderate/high). Significance was set a priori at a two-sided alpha of .05 for this exploratory analysis.
Results
Sample Characteristics.
Between August 2017 and October 2021, we enrolled 579 patients; 317 in the DT group and 262 in the usual care group. The mean age was 66.4 ± 7.4 years. The sample was 41% male, 82% with at least some college education, 60% married or partnered, 87% reported having a religion, and 61% had stage 4 cancer. The sample was majority White (n=448) or Black (n=103). The vast majority of the patients (82%) had Palliative Performance Scale scores between 70 and 100, which means they were functionally able to perform self-care (Table 1).
Table 1.
Sample characteristics (N=579)
| Variable | Category | All | Usual Care | Dignity Therapy |
|---|---|---|---|---|
| Age | Mean ± SD | 66.4 ± 7.4 | 67.2 ± 7.5 | 65.7 ± 7.3 |
| Gender | Female | 59% | 56% | 62% |
| Male | 41% | 44% | 38% | |
| Race | Other* | 22% | 29% | 15% |
| White | 78% | 71% | 85% | |
| Ethnicity | Hispanic or Latino (H/L) | 6% | 5% | 7% |
| Not H/L | 94% | 95% | 93% | |
| Marital status | Married/Partnered | 60% | 61% | 59% |
| Single | 40% | 39% | 41% | |
| Education level | High school or less | 18% | 24% | 13% |
| Some college | 32% | 30% | 33% | |
| College | 25% | 23% | 27% | |
| Advanced degree | 26% | 23% | 28% | |
| Family annual income | less than $10,000 | 8% | 8% | 7% |
| $10,000 to $19,999 | 12% | 12% | 11% | |
| $20,000 to $29,999 | 10% | 11% | 9% | |
| $30,000 to $39,999 | 8% | 8% | 9% | |
| $40,000 to $49,999 | 7% | 6% | 7% | |
| $50,000 or more | 56% | 55% | 57% | |
| Christian | No | 24% | 19% | 28% |
| Yes | 76% | 81% | 72% | |
| Have a religion | No | 13% | 12% | 15% |
| Yes | 87% | 88% | 85% | |
| Cancer stage | 1 | 12% | 10% | 14% |
| 2 | 7% | 7% | 7% | |
| 3 | 20% | 22% | 19% | |
| 4 | 61% | 61% | 60% | |
| Time since: diagnosis (Years) | Mean ± SD | 3.8 ± 4.6 | 4.3 ± 4.9 | 3.4 ± 4.2 |
| Metastasized | Yes | 54% | 56% | 53% |
| Palliative Performance Score | 60 | 18% | 15% | 20% |
| 70 | 32% | 32% | 32% | |
| 80 | 30% | 31% | 30% | |
| 90 | 16% | 19% | 14% | |
| 100 | 4% | 4% | 4% |
Other Race includes 103 Black, 5 Asian, 2 Pacific Islander, 1 Native American, 13 other race, and 7 unknown race participants.
Distress at Baseline.
At baseline, most patients (76%) reported low symptom burden (Table 2). Similar proportions of patients in usual care and DT groups reported having moderate/high symptom burdens (24% in both groups). Most patients (79%) reported low R/S struggle, including 83% in usual care and 76% in DT groups.
Table 2.
Baseline values for distress levels and patient outcomes (N=579).
| Variable (possible range of scores) | Category | All | Usual Care | Dignity Therapy |
|---|---|---|---|---|
| Symptom burden (0–90) | Low | 76% | 76% | 76% |
| High | 24% | 24% | 24% | |
| R/S struggle (0–56) | Low | 79% | 83% | 76% |
| High | 21% | 17% | 24% | |
| Dignity Impact Score (7–35) | Mean ± SD | 25.0 ± 4.4 | 25.9 ± 4.3 | 24.3 ± 4.3 |
| Preparation (4–20) | Mean ± SD | 15.0 ± 3.4 | 15.4 ± 3.2 | 14.7 ± 3.5 |
| Completion (7–35) | Mean ± SD | 27.0 ± 5.6 | 26.8 ± 5.2 | 27.3 ± 5.8 |
Preparation = QUAL-E preparation for death; Completion = QUAL-E life completion
Outcome Measures at Baseline.
At baseline, the mean DIS score was 24.3±4.3 in the DT group and 25.9±4.3 in the usual care group. The mean preparation score was 14.7±3.5 in the DT group and 15.4±3.2 in the usual care group. The mean completion score was 27.3±5.8 in the DT group and 26.8±5.2 in the usual care group.
Effects of Moderate/High Symptom Burden.
The DT intervention had significant effects on our primary outcome, DIS, for both patients with low symptom burden (p=.03) and those with moderate/high symptom burden (p=.001) (Table 3). The difference in the treatment effect sizes was just short of statistical significance in our sample (p=.054). The DT intervention effect on preparation was not statistically significant for either patients with low (p=.07) or those with moderate/high symptom burden (p=.65). Similarly, the DT intervention effect on completion was not statistically significant for either patients with low (p=.15) or those with moderate/high symptom burden (p=.29). Furthermore, the interaction between the group assignment and the symptom burden (low versus moderate/high) was not statistically significant for either preparation (p=.27) or completion (p=.93).
Table 3.
Estimates of DT intervention effects for patients with low and moderate/high symptom burden
| Outcome | Symptom Burden | Estimate | Standard Error | t | p |
|---|---|---|---|---|---|
| Primary: | |||||
| DIS | Low | 1.479 | 0.692 | 2.136 | .03 |
| Moderate/High | 2.836 | 0.824 | 3.443 | .001 | |
| Secondary: | |||||
| Preparation | Low | −0.838 | 0.458 | −1.829 | .07 |
| Moderate/High | −0.270 | 0.592 | −0.457 | .65 | |
| Completion | Low | 0.968 | 0.663 | 1.459 | .15 |
| Moderate/High | 0.905 | 0.845 | 1.070 | .29 |
DIS = Dignity Impact Scale; Preparation = QUAL-E preparation for death; Completion = QUAL-E life completion
Effects of Moderate/High R/S Struggle.
The effects of DT intervention on our primary outcome, DIS, was significant for patients with low R/S struggle (p=.004) and not for those with moderate/high R/S struggle (p=.10), but the difference in the treatment effect sizes between these two types of patients was not significant (p=.52) (Table 4). The DT intervention effect on preparation was not statistically significant for either patients with low (p=.07) or those with moderate/high R/S struggle (p=1). Similarly, the DT intervention effect on completion was not statistically significant for either patients with low (p=.17) or those with moderate/high R/S struggle (p=.26). Furthermore, the interaction between the group assignment and the R/S struggle (low versus moderate/high) was not statistically significant for either preparation (p=.13) or completion (p=.88).
Table 4.
Estimates of DT intervention effects for patients with low and moderate/high religious/spiritual struggle
| Outcome | Religious/spiritual struggle | Estimate | Standard Error | t | p |
|---|---|---|---|---|---|
| Primary: | |||||
| DIS | Low | 1.964 | 0.680 | 2.887 | .004 |
| Moderate/High | 1.464 | 0.896 | 1.634 | .10 | |
| Secondary: | |||||
| Preparation | Low | −0.832 | 0.450 | −1.850 | .07 |
| Moderate/High | 0.002 | 0.628 | 0.004 | 1 | |
| Completion | Low | 0.900 | 0.662 | 1.360 | .17 |
| Moderate/High | 1.020 | 0.902 | 1.130 | .26 |
DIS = Dignity Impact Scale; Preparation = QUAL-E preparation for death; Completion = QUAL-E life completion
Discussion
In prior clinical trials, baseline levels of distress appear to have played a role in whether DT had statistically significant effects on study outcomes.(4, 10) Although we found statistically significant effects of DT on our dignity impact outcome,(12) here we examined whether these effects were moderated by symptom burden or R/S struggle. We found that DT was effective for those with both low and high symptom burden. The marginal significance (p=.054) of this moderation suggests the effects of DT may be stronger for those with greater symptom burden; a possibility that deserves further study. We also found that DT was effective for those with low but not high levels of R/S struggle.
Our findings contrast with research that suggests possible floor effects for DT (5) as well as research about floor effects of other psychosocial interventions for cancer patients.(8, 29) A meta-analysis of 61 clinical trials among patients with cancer found that where pre-intervention distress was low intervention effects were negligible, where it was high intervention effects were pronounced.(9). Unlike this meta-analysis, we did not examine the role of floor effects for our study outcome, dignity impact. Rather, we examined possible DT effect modification by other measures of distress. Some investigators have found that other psychological factors have modified the effects of their interventions on study outcomes. These include low self-esteem, low self-efficacy, and high depression all modifying the effects of a psycho-educational intervention for quality of life of men with prostate cancer.(30)
In contrast to these studies, we examined the possible moderating effects of symptom burden. While the benefits of DT may have been greater for those with high symptom burden, DT was also beneficial for those with low symptom burden. As others have noted, the association between treatment and disease factors and adjustment to serious illness may be complex.(31). Our findings suggest that DT can benefit dignity impact regardless of symptom burden level.
Because we conceptualized DT as in part a spiritual/existential intervention,(4) we also examined possible effect modification associated with R/S struggle. The finding of statistically significant effectiveness of DT for participants with low but not high levels of R/S struggle contrasts with patterns of effect modification for psycho-social variables. We note that the number of patients with high R/S struggle was much smaller than those with low R/S struggle in our sample which may have contributed to the DT effect being statistically insignificant among these patients. Another possible explanation is that DT is not sufficiently specific for issues associated with moderate/high R/S struggle. In another report we described the prevalence of baseline R/S struggle among 331 participants in this study.(28) Among them, 21% endorsed a response of ‘quite a bit’ or ‘a great deal’ to the item “Felt angry at God;’ 28% responded similarly to the items assessing divine struggle. The focus of DT on sharing one’s life story and legacy does not address these painful aspects of R/S struggle. This may help explain why DT did not show statistically significant benefits for participants with high R/S struggle. Future research is needed to examine this possibility.
Further studies assessing the robustness of our findings will ideally employ a more heterogenous sample including more participants with higher initial levels of distress. Clinical experience and studies of DT suggest that people near the end of life welcome assistance in settling relationships and leaving personal legacies.(32–35) Future inquiry will also be aided by improved measures for achieving this kind of dying role engagement.
The present study was limited by our inability to recruit more participants with high symptom burden or R/S struggle; a problem faced by other palliative care investigators.(36) Additionally, although we followed recommendations from other investigators,(32) existing research points to diverse cutpoints for the ESAS symptoms and support for the cutpoint we selected for the RSS-14 is limited.
Conclusion
The beneficial effects of DT on dignity impact for cancer patients receiving palliative care were apparent for those with low and high symptom burden and low R/S struggle. These findings suggest that DT can be beneficial for most cancer patients who are receiving specialty palliative care. Further research is needed to determine if moderate or high levels of R/S struggle reduce the beneficial effects of DT.
Key Message:
Moderating effects of symptom burden and religious/spiritual struggles on outcomes (dignity impact, preparation or completion tasks) of Dignity Therapy were not significant, but further work is warranted especially on the effects of symptom burden on dignity impact.
Acknowledgments:
Funding:
This research was made possible by Grant Number 1R01CA200867 from the National Institutes of Health (NIH), National Cancer Institute (NCI) and the National Institute of Nursing Research (NINR). The information in this article is solely the responsibility of the authors and does not necessarily represent the views of the NIH, NCI, or NINR. The final peer-reviewed manuscript is subject to the National Institutes of Health Public Access Policy.
The authors thank the patients, clinicians, and the many research staff members for giving their time to advance science.
Footnotes
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Competing interests: None of the coauthors report competing interests.
Data and materials availability:
De-identified data will be available from the DJW via a fully executed data use agreement.
References
- 1.Chochinov HM, Hack T, Hassard T, et al. Dignity in the terminally ill: a cross-sectional, cohort study. Lancet 2002;360:2026–30. [DOI] [PubMed] [Google Scholar]
- 2.Chochinov HM. Dignity Therapy: Final Words for Final Days, New York, NY: Oxford University Press, 2012. [Google Scholar]
- 3.De Vincenzo F, Lombardo L, Iani L, et al. Spiritual well-being, dignity-related distress and demoralisation at the end of life-effects of dignity therapy: a randomised controlled trial. BMJ Support Palliat Care 2023. 2023 Jan 26:bmjspcare-2022–003696. doi: 10.1136/spcare-2022-003696. Epub ahead of print [DOI] [PubMed] [Google Scholar]
- 4.Fitchett G, Emanuel L, Handzo G, Boyken L, Wilkie DJ. Care of the human spirit and the role of dignity therapy: a systematic review of dignity therapy research. BMC Palliat Care 2015;14:8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Chochinov HM, Kristjanson LJ, Breitbart W, et al. Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial. Lancet Oncol 2011;12:753–62. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 6.Hall S, Goddard C, Opio D, et al. A novel approach to enhancing hope in patients with advanced cancer: a randomised phase II trial of dignity therapy. BMJ Support Palliat Care 2011;1:315–321. [DOI] [PubMed] [Google Scholar]
- 7.Hall S, Goddard C, Opio D, Speck P, Higginson IJ. Feasibility, acceptability and potential effectiveness of Dignity Therapy for older people in care homes: a phase II randomized controlled trial of a brief palliative care psychotherapy. Palliat Med 2012;26:703–12. [DOI] [PubMed] [Google Scholar]
- 8.Linden W, Girgis A. Psychological treatment outcomes for cancer patients: what do meta-analyses tell us about distress reduction? Psychooncology 2012;21:343–50. [DOI] [PubMed] [Google Scholar]
- 9.Schneider S, Moyer A, Knapp-Oliver S, et al. Pre-intervention distress moderates the efficacy of psychosocial treatment for cancer patients: a meta-analysis. J Behav Med 2010;33:1–14. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 10.Juliao M, Barbosa A, Oliveira F, Nunes B, Vaz Carneiro A. Efficacy of dignity therapy for depression and anxiety in terminally ill patients: early results of a randomized controlled trial. Palliat Support Care 2013;11:481–9. [DOI] [PubMed] [Google Scholar]
- 11.Brown CA, Lilford RJ. The stepped wedge trial design: a systematic review. BMC Med Res Methodol 2006;6:54. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 12.Wilkie DJ, Fitchett G, Yao Y, et al. Engaging Mortality: Effective Implementation of Dignity Therapy. J Palliat Med, 2023. September 7. Epublished ahead of print. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 13.Kittelson S, Scarton L, Barker P, et al. Dignity Therapy Led by Nurses or Chaplains for Elderly Cancer Palliative Care Outpatients: Protocol for a Randomized Controlled Trial. JMIR Res Protoc 2019;8:e12213. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 14.Emanuel LL, Solomon S, Chochinov HM, et al. Death Anxiety and Correlates in Cancer Patients Receiving Palliative Care. J Palliat Med 2023;26:235–243. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 15.Anderson F, Downing GM, Hill J, Casorso L, Lerch N. Palliative performance scale (PPS): a new tool. J Palliat Care 1996;12:5–11. [PubMed] [Google Scholar]
- 16.Virik K, Glare P. Validation of the palliative performance scale for inpatients admitted to a palliative care unit in Sydney, Australia. J Pain Symptom Manage 2002;23:455–7. [DOI] [PubMed] [Google Scholar]
- 17.Weng LC, Huang HL, Wilkie DJ, et al. Predicting survival with the Palliative Performance Scale in a minority-serving hospice and palliative care program. J Pain Symptom Manage 2009;37:642–8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 18.Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the. J Psychiatr Res 1975;12:189–98. [DOI] [PubMed] [Google Scholar]
- 19.Schoppee TM, Scarton L, Bluck S, et al. Description of a training protocol to improve research reproducibility for dignity therapy: an interview-based intervention. Palliat Support Care 2022;20:178–188. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Schoppee TM, Scarton L, Bluck S, et al. Dignity therapy intervention fidelity: a cross-sectional descriptive study with older adult outpatients with cancer. BMC Palliat Care 2022;21:8. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 21.Scarton L, Oh S, Sylvera A, et al. Dignity Impact as a Primary Outcome Measure for Dignity Therapy. Am J Hosp Palliat Care 2018:1049909118777987. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 22.Steinhauser KE, Clipp EC, Bosworth HB, et al. Measuring quality of life at the end of life: validation of the QUAL-E. Palliat Support Care 2004;2:3–14. [DOI] [PubMed] [Google Scholar]
- 23.Watanabe SM, Nekolaichuk CL, Beaumont C. The Edmonton Symptom Assessment System, a proposed tool for distress screening in cancer patients: development and refinement. Psychooncology 2012;21:977–85. [DOI] [PubMed] [Google Scholar]
- 24.Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991; 7(2):6–9. [PubMed] [Google Scholar]
- 25.Kako J, Kobayashi M, Kanno Y, et al. The Optimal Cutoff Point for Expressing Revised Edmonton Symptom Assessment System Scores as Binary Data Indicating the Presence or Absence of Symptoms. Am J Hosp Palliat Care 2018;35:1390–1393. [DOI] [PubMed] [Google Scholar]
- 26.Oldenmenger WH, de Raaf PJ, de Klerk C, van der Rijt CC. Cut points on 0–10 numeric rating scales for symptoms included in the Edmonton Symptom Assessment Scale in cancer patients: a systematic review. J Pain Symptom Manage 2013;45:1083–93. [DOI] [PubMed] [Google Scholar]
- 27.Exline JJ, Pargament KI, Wilt JA, Grubbs JB, Yali AM. The RSS-14: Development and Preliminary Validation of a 14-item Form of the Religious and Spiritual Struggles Scale. Psychol Relig Spirit 2022; 10.1037/rel0000472. [DOI] [Google Scholar]
- 28.Damen A, Exline J, Pargament K, et al. Prevalence, Predictors and Correlates of Religious and Spiritual Struggles in Palliative Cancer Patients. J Pain Symptom Manage 2021;62:e139–e147. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 29.Wang AW, Bouchard LC, Gudenkauf LM, et al. Differential psychological effects of cognitive-behavioral stress management among breast cancer patients with high and low initial cancer-specific distress. J Psychosom Res. 2018. Oct;113:52–57. doi: 10.1016/j.jpsychores.2018.07.011. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 30.Helgeson VS, Lepore SJ, Eton DT. Moderators of the benefits of psychoeducational interventions for men with prostate cancer. Health Psychol. 2006. May;25(3):348–54. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 31.Scheier MF, Helgeson VS, Schulz R, et al. Moderators of interventions designed to enhance physical and psychological functioning among younger women with early-stage breast cancer. J Clin Oncol. 2007. Dec 20;25(36):5710–4. [DOI] [PubMed] [Google Scholar]
- 32.Steinhauser KE, Stechuchak KM, Ramos K, et al. Current measures of distress may not account for what’s most important in existential care interventions: Results of the outlook trial. Palliat Support Care 2020;18:648–657. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 33.Tait GR, Schryer C, McDougall A, Lingard L. Exploring the therapeutic power of narrative at the end of life: a qualitative analysis of narratives emerging in dignity therapy. BMJ Support Palliat Care 2011;1:296–300. [DOI] [PubMed] [Google Scholar]
- 34.Wang C, Chen J, Wang Y, et al. Effects of family participatory dignity therapy on the psychological well-being and family function of patients with haematologic malignancies and their family caregivers: A randomised controlled trial. Int J Nurs Stud 2021;118:103922. [DOI] [PubMed] [Google Scholar]
- 35.Lichtenthal WG, Roberts KE, Pessin H, Applebaum A, Breitbart W. Meaning-Centered Psychotherapy and Cancer: Finding Meaning in the Face of Suffering. Psychiatr Times 2020;37:23–25. [PMC free article] [PubMed] [Google Scholar]
- 36.Steinhauser KE, Clipp EC, Hays JC, et al. Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliat Med 2006;20:745–54. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Data Availability Statement
De-identified data will be available from the DJW via a fully executed data use agreement.