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On 3–4 October 2022, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the Third Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to reflect on the event within the broader context of the international WHPCD theme: “healing hearts and communities.” We describe lessons learned in anticipation of the fourth annual conference to be held on 3–4 October 2023.
Description of the third annual event, conference planning team reflection, and attendee evaluation responses.
The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care globally. Since 2020, the conference has attracted an increasing number of attendees from around the world. Two primary aims continue to guide the event: community building and wisdom sharing. Fifty-two interprofessional palliative care experts, advocates, patients, and caregivers provided 13 unique interactive sessions. Four hundred and fifty-eight multidisciplinary registrants from at least 17 countries joined the program. Free registration for colleagues in low- and middle-income countries, students and trainees, and individuals experiencing financial hardship remains a cornerstone of inclusion and equitable access to the event.
Significance of results
The US WHPCD celebration provides a virtual platform that offers opportunities for scientific dissemination and collective reflection on hospice and palliative care delivery amid significant local and global changes in clinical practice, research, policy and advocacy, and population health. We remain committed to ensuring an internationally relevant, culturally diverse, and multidisciplinary agenda that will continue to draw increased participation worldwide during future annual events.
This brief report aims to describe and determine the association of family functioning (e.g., cohesion and expressiveness) with psychosocial needs among Spanish Latinx patients coping with advanced cancers.
Descriptive and correlation analyses were performed on data from 103 patients coping with advanced cancer (Stages III and IV). The measures used were the Family Relationships Index, the Hospital Anxiety and Depression Scale, and the Functional Assessment of Cancer Therapy: General.
Results indicated that most of the participants had low family function (65%). Participants with higher family functioning (35%) had high levels of quality of life [r(103) .318, p < .002]. A higher level of quality of life was also strongly associated with lower levels of anxiety [r(95) −.653, p < .000], lower levels of depression [r(95) −.733, p < .000], and lower levels of hopelessness [r(95) −.585, p = .000]. A total of 22.3% of Latinx advanced cancer patients reported poor cohesiveness; those with low cohesiveness also had higher levels of depression [r(103) −.28, p = .004] and anxiety [r(103) −.27, p = .005]. Correlations between expressiveness and hopelessness were significant; namely, those with higher expressiveness had lower hopelessness [r(103) −.274, p = .005].
Significance of results
Findings present a high correlation between family functioning and psychosocial symptoms.
On October 5–6, 2021, the Memorial Sloan Kettering Cancer Center Supportive Care Service and Department of Psychiatry and Behavioral Sciences hosted the 2nd Annual United States (US) Celebration of World Hospice and Palliative Care Day (WHPCD). The purpose of this article is to describe the event within the broader context of the international WHPCD theme: “Leave No One Behind — Equity in Access to Palliative Care.” We reflect on lessons learned in anticipation of the 3rd annual conference to be held October 3–4, 2022.
Description of the 2nd annual event, conference planning team reflection, and attendee evaluation responses.
The Worldwide Hospice Palliative Care Alliance launched WHPCD in 2005 as an annual unified day of action to celebrate and support hospice and palliative care around the world. The 2021 US-based innovative virtual conference featured 37 interprofessional hospice and palliative care specialists and patient and family caregiver speakers across 11 diverse sessions with a focus on health equity and COVID-19 considerations. Two primary aims continue to guide the event: community building and wisdom sharing at the intersection of art and science. 278 registrants from at least 14 countries and 21 different states across the US joined the program, which served as a global debriefing for hospice and palliative care workers from diverse settings, contexts, and disciplines.
Significance of results
The US WHPCD Celebration creates a virtual coming together for collective reflection on hospice and palliative care delivery amid vast changes in clinical practice, research, and policy, both locally and globally. In addition, our goal to ensure an internationally relevant, culturally inclusive, and multidisciplinary agenda will continue to draw increased participation worldwide during future annual events.
The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates’ mental health and patient outcomes.
Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15–20 min modules, totaling 1.5–2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments.
Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = −0.41), peritraumatic distress (d = −0.24), and experiential avoidance (d = −0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = −0.94), depression (d = −0.23), anxiety (d = −0.29), and experiential avoidance (d = −0.30).
Significance of results
Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.
To describe the feasibility of a meaning-centered group psychotherapy (MCGP) adaptation in a sample of Portuguese cancer patients.
The study was carried out according to four steps: 1st — Transcultural adaptation and validation (focus groups); 2nd — Preliminary study with MCGP original version (to test its feasibility); 3rd — Adaptation of MCGP original version to a 4-session version (and internal pilot study); and 4th — Pilot exploratory trial (MCGP-4 session version), implemented between January 1, 2018 and December 31, 2019. Inclusion criteria were >18 years, psychological complaints, and difficulty to adapt to cancer. Allocation was according to participants’ preference: MCGP vs. care as usual (CAU). Primary outcomes were: MCGP adapted version improved quality of life (QoL) and spiritual well-being; secondary outcomes were improvement of depression, anxiety, and distress. Assessments were done at baseline (T1) and 1 month after (T2), with self-report socio-demographic and clinical questionnaires, Distress Thermometer (DT), McGill Quality of Life Questionnaire (MQOL), Functional Assessment of Chronic Illness Therapy — Spiritual Well-Being Scale (FACIT-Sp-12), Hospital Anxiety and Depression Scale, and its subscales (HADS — HADS-D, HADS-A).
In the 1st step, and through focus groups, the manual was reformulated and tested. The preliminary study (2nd step) with MCGP original version showed a high number of dropouts which could jeopardize the study and, after reframing the sessions content, MCGP was adapted to a 4-session version, and its feasibility was tested by an internal pilot study (3rd step). The pilot exploratory trial (4th step) had 91 participants. Most socio-demographic and clinical characteristics between the groups (51: MCGP; 40: CAU) had no statistically significant differences. A comparison between the two groups at T2 showed that the MCGP group scored significantly higher in the general (U = 552.00, P < 0.001), and existential (U = 727.50, P = 0.018) domains and total score (U = 717.50, P = 0.015) of QoL, and CAU presented statistical higher levels in DT (U = 608.50, P = 0.001). Comparing the groups between T1 and T2, the MCGP group had a statistically significant improvement in the general (Z = −3.67, P < 0.001) and psychosocial (Z = −2.89, P = 0.004) domains and total score (Z = −2.71, P = 0.007) of QoL, and a statistically significant decrease in DT (Z = −2.40, P = 0.016). In terms of group effects, the MCGP group presented increased general (b = 1.42, P < 0.001, η2p = 0.179), and support (b = 0.80, P = 0.045, η2p = 0.048) domains and total score (b = 0.81, P = 0.013, η2p = 0.073) of QoL (small to elevated dimensions), and decreased levels of depression (b = −1.14, P = 0.044, η2p = 0.048), and distress (b = −1.38, P = 0.001, η2p = 0.127) (small to medium dimensions), compared with CAU. At T2, participants who attended ≥3 sessions (n = 38) had a statistically significant higher score in the general domain (U = 130.50, P = 0.009) of QoL, comparing with those who attended 1 or 2 sessions (n = 13).
Significance of results
This study supports the benefits of an MCGP adapted version in improving QoL and psychologic well-being. More studies are necessary to address the limitations of this pilot exploratory trial, as its small sample size.
Inflammation may contribute to the high prevalence of depressive symptoms seen in lung cancer. “Sickness behavior” is a cluster of symptoms induced by inflammation that are similar but distinct from depressive symptoms. The Sickness Behavior Inventory-Revised (SBI-R) was developed to measure sickness behavior. We hypothesized that the SBI-R would demonstrate adequate psychometric properties in association with inflammation.
Participants with stage IV lung cancer (n = 92) were evaluated for sickness behavior using the SBI-R. Concomitant assessments were made of depression (Patient Hospital Questionniare-9, Hospital Anxiety and Depression Scale) and inflammation [C-reactive protein (CRP)]. Classical test theory (CTT) was applied and multivariate models were created to explain SBI-R associations with depression and inflammation. Factor Analysis was also used to identify the underlying factor structure of the hypothesized construct of sickness behavior. A longitudinal analysis was conducted for a subset of participants.
The sample mean for the 12-item SBI-R was 8.3 (6.7) with a range from 0 to 33. The SBI-R demonstrated adequate internal consistency with a Cronbach's coefficient of 0.85, which did not increase by more than 0.01 with any single-item removal. This analysis examined factor loadings onto a single factor extracted using the principle components method. Eleven items had factor loadings that exceeded 0.40. SBI-R total scores were significantly correlated with depressive symptoms (r = 0.78, p < 0.001) and CRP (r = 0.47, p < 0.001). Multivariate analyses revealed that inflammation and depressive symptoms explained 67% of SBI-R variance.
Significance of results
The SBI-R demonstrated adequate reliability and construct validity in this patient population with metastatic lung cancer. The observed findings suggest that the SBI-R can meaningfully capture the presence of sickness behavior and may facilitate a greater understanding of inflammatory depression.
Desire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit.
Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020.
Of the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% confidence interval (CI) [0.93–0.99]); Edmonton Symptom Assessment Scale scores for drowsiness (OR = 4.05; 95% CI [1.42–11.57]), shortness of breath (OR = 3.35; 95% CI [1.09–10.31]), well-being (OR = 7.64; 95% CI [1.63–35.81]). DfD was associated with being depressed (OR = 19.24; 95% CI [3.09–+inf]); feeling anxious (OR = 11.11; 95% CI [2.51–49.29]); HADS anxiety subscale ≥11 (OR = 25.0; 95% CI [2.10–298.29]); will-to-live (OR = 39.53; 95% CI [4.85–321.96]). Patients feeling a burden were more likely to desire death (OR = 14.67; 95% CI [1.85–116.17]), as well as those who were not adapted to the disease (OR = 4.08; 95% CI [1.30–12.84]). In multivariate regression analyses predicting DfD, three independent factors emerged: higher PPS scores were associated with no DfD (aOR = 0.95; 95% CI [0.91–0.99]), while the sense of being a burden (aOR = 12.82; 95% CI [1.31–125.16]) and worse well-being (aOR = 7.72; 95% CI [1.26–47.38]) predicted DfD.
Significance of results
Prevalence of DfD was 20% and consistent with previous Portuguese evidence on DfD in PC inpatients. Both physical and psychosocial factors contribute to a stronger DfD.