Caregiver Evaluation of the Quality of End-Of-Life Care (CEQUEL) Scale: The Caregiver's Perception of Patient Care Near Death

Purpose End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. Because none include caregiver perception of patient suffering or prolongation of death, we sought to develop and validate the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale to include these dimensions of caregiver-perceived quality of EOL care. Patients and Methods Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N = 275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL's factor structure was examined; reliability was evaluated using Cronbach's α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results: Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach's α (range: 0.52–0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (ρ = .13; p≤.05) and hospice enrollment (z = −2.09; p≤.05), and negatively associated with bereaved caregiver regret (ρ = −.36, p≤.001) and a diagnosis of Posttraumatic Stress Disorder (z = −2.06; p≤.05). Conclusion: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver's perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment

A Reflection on Virtual Reality Design for Psychological, Cognitive & Behavioral Interventions: Design Needs, Opportunities & Challenges

Despite the substantial research interest in using Virtual Reality (VR) in healthcare in general and in Psychological, Cognitive, and Behavioral (PC&B) interventions in specific, as well as emerging research supporting the efficacy of VR in healthcare, the design process of translating therapies into VR to meet the needs of critical stakeholders such as users and clinicians is rarely addressed. In this paper, we aim to shed light onto the design needs, opportunities and challenges in designing efficient and effective PC&B-VR interventions. Through analyzing the co-design processes of four user-centered PC&B-VR interventions, we examined how therapies were adapted into VR to meet stakeholders’ requirements, explored design elements for meaningful experiences, and investigated how the understanding of healthcare contexts contribute to the VR intervention design. This paper presents the HCI research community with design opportunities and challenges as well as future directions for PC&B-VR intervention design

Associations between palliative chemotherapy and adult cancer patients’ end of life care and place of death: prospective cohort study

Objectives: To determine whether the receipt of chemotherapy among terminally ill cancer patients months before death was associated with patients’ subsequent intensive medical care and place of death. Design: Secondary analysis of a prospective, multi-institution, longitudinal study of patients with advanced cancer. Setting: Eight outpatient oncology clinics in the United States. Participants: 386 adult patients with metastatic cancers refractory to at least one chemotherapy regimen, whom physicians identified as terminally ill at study enrollment and who subsequently died. Main outcome measures Primary outcomes: intensive medical care (cardiopulmonary resuscitation, mechanical ventilation, or both) in the last week of life and patients’ place of death (for example, intensive care unit). Secondary outcomes: survival, late hospice referrals (≤1 week before death), and dying in preferred place of death. Results: 216 (56%) of 386 terminally ill cancer patients were receiving palliative chemotherapy at study enrollment, a median of 4.0 months before death. After propensity score weighted adjustment, use of chemotherapy at enrollment was associated with higher rates of cardiopulmonary resuscitation, mechanical ventilation, or both in the last week of life (14% v 2%; adjusted risk difference 10.5%, 95% confidence interval 5.0% to 15.5%) and late hospice referrals (54% v 37%; 13.6%, 3.6% to 23.6%) but no difference in survival (hazard ratio 1.11, 95% confidence interval 0.90 to 1.38). Patients receiving palliative chemotherapy were more likely to die in an intensive care unit (11% v 2%; adjusted risk difference 6.1%, 1.1% to 11.1%) and less likely to die at home (47% v 66%; −10.8%, −1.0% to −20.6%), compared with those who were not. Patients receiving palliative chemotherapy were also less likely to die in their preferred place, compared with those who were not (65% v 80%; adjusted risk difference −9.4%, −0.8% to −18.1%). Conclusions: The use of chemotherapy in terminally ill cancer patients in the last months of life was associated with an increased risk of undergoing cardiopulmonary resuscitation, mechanical ventilation or both and of dying in an intensive care unit. Future research should determine the mechanisms by which palliative chemotherapy affects end of life outcomes and patients’ attainment of their goals

Living Memory Home: Understanding Continuing Bond in the Digital Age through Backstage Grieving

Prolong Grief Disorder (PGD) is a condition in which mourners are stuck in the grief process for a prolonged period and continue to suffer from an intense, mal-adaptive level of grief. Despite the increased popularity of virtual mourning practices, and subsequently the emergence of HCI research in this area, there is little research looking into how continuing bonds maintained digitally promote or impede bereavement adjustment. Through a one-month diary study and in-depth interviews with 17 participants who recently lost their loved ones, we identified four broad mechanisms of how grievers engage in what we called "backstage" grieving (as opposed to bereavement through digital public space like social media). We further discuss how this personal and private grieving is important in maintaining emotional well-being hence avoiding developing PGD, as well as possible design opportunities and challenges for future digital tools to support grieving

"Prolonged grief disorder" and "persistent complex bereavement disorder", but not "complicated grief", are one and the same diagnostic entity: an analysis of data from the Yale Bereavement Study

There exists a general consensus that prolonged grief disorder (PGD), or some variant of PGD, represents a distinct mental disorder worthy of diagnosis and treatment. Nevertheless, confusion remains over whether different names and proposed symptom criteria for this disorder identify the same or different diagnostic entities. This study aimed to determine whether PGD, complicated grief (CG), and persistent complex bereavement disorder (PCBD) as described by the DSM-5 are substantively or merely semantically different diagnostic entities. Data were derived from the Yale Bereavement Study, a longitudinal community-based study of bereaved individuals funded by the US National Institute of Mental Health, designed explicitly to evaluate diagnostic criteria for disordered grief. The results suggested that the difference between PGD and PCBD is only semantic. The level of agreement between the original PGD test, a new version of the PGD test proposed for ICD-11 and the PCBD test was high (pairwise kappa coefficients = 0.80-0.84). Their estimates of rate of disorder in this community sample were similarly low (∼10%). Their levels of diagnostic specificity were comparably high (95.0-98.3%). Their predictive validity was comparable. In contrast, the test for CG had only moderate agreement with those for PGD and PCBD; its estimate of rate of disorder was three-fold higher (∼30%); its diagnostic specificity was poorer, and it had no predictive validity. We conclude that PGD, PCBD and proposed ICD-11, but not CG, symptom-diagnostic tests identify a single diagnostic entity. Ultimately, brief symptom-diagnostic tests, such as the one proposed here for ICD-11, may have the greatest clinical utility

Clinical Trial Participation among Ethnic/Racial Minority and Majority Patients with Advanced Cancer: What Factors Most Influence Enrollment?

BACKGROUND: Studies using administrative data report that racial/ethnic minority patients enroll in clinical trials less frequently than white patients. We studied a cohort of terminally ill cancer patients to determine a) if racial/ethnic minority patients have lower rates of drug trial enrollment than white patients once socioeconomic characteristics are accounted for and b) what factors most influence drug trial enrollment among patients with advanced canceroverall. METHODS: Coping with Cancer (CwC) is a National Cancer Institute/National Institute of Mental Health (NCI/NIMH)-funded multisite, prospective, longitudinal study of patients with advanced cancer. Baseline interviews assessed drug trial enrollment as well as socioeconomic characteristics. Logistic regression models estimated associations between drug trial enrollment and baseline characteristics. Stepwise, backward, and subset model selection was applied to select the final model where characteristics significant at α=0.05 remained in the model. RESULTS: At a median of 4.4 months prior to death, 35 of 358 patients (9.8%) were enrolled in a drug trial. In unadjusted analyses, race/ethnicity, health insurance, performance status, recruitment site, cancer type, preference for life-extending care, and lack of end-of-life care planning were associated (p CONCLUSION: Patient race/ethnicity was not associated with clinical trial enrollment after adjustment for socioeconomic covariates. Patients with advanced cancer endorsing less engagement in end-of-life planning were more likely to be enrolled in a clinical trial

War and Bereavement: Consequences for Mental and Physical Distress

Background: Little is known about the long-term impact of the killing of a parent in childhood or adolescence during war on distress and disability in young adulthood. This study assessed current prevalence rates of mental disorders and levels of dysfunction among young adults who had lost their father due to war-related violence in childhood or adolescence. Methods: 179 bereaved young adults and 175 non-bereaved young adults were interviewed a decade after experiencing the war in Kosovo. Prevalence rates of Major Depressive Episode (MDE), anxiety, and substance use disorders, and current suicide risk were assessed using the Mini–International Neuropsychiatric Interview. The syndrome of Prolonged Grief Disorder (PGD) was assessed with the Prolonged Grief Disorder Interview (PG-13). Somatic symptoms were measured with the Patient Health Questionnaire. General health distress was assessed with the General Health Questionnaire. Findings: Bereaved participants were significantly more likely to suffer from either MDE or any anxiety disorder than nonbereaved participants (58.7 % vs. 40%). Among bereaved participants, 39.7 % met criteria for Post-Traumatic Stress Disorder, 34.6 % for PGD, and 22.3 % for MDE. Bereaved participants with PGD were more likely to suffer from MDE, any anxiety disorder, or current suicide risk than bereaved participants without PGD. Furthermore, these participants reported significantly greater physical distress than bereaved participants without PGD. Conclusion: War-related loss during middle childhood and adolescence presents significant risk for adverse mental healt

Utilization of ACP CPT codes among high-need Medicare beneficiaries in 2017: A brief report

IMPORTANCE: Medicare beneficiaries with high medical needs can benefit from Advance Care Planning (ACP). Medicare reimburses clinical providers for ACP discussions, but it is unknown whether high-need beneficiaries are receiving this service. OBJECTIVE: To compare rates of billed ACP discussions among a cohort of high-need Medicare beneficiaries with the non-high-needs Medicare population. DESIGN: Retrospective analysis of Medicare Fee-for-Service (FFS) claims in 2017 comparing high-need beneficiaries (seriously ill, frail, ESRD, and disabled) with non-high need beneficiaries. SETTING: Nationally representative FFS Medicare 20% sample. PARTICIPANTS: Medicare beneficiaries were assigned to one of the following classifications: seriously ill (65+), frail (65+), seriously ill and frail (65+); non-high need (65+); end stage renal disease (ESRD) or disabled ( \u3c 65). All participants had data available for years 2016-2017. EXPOSURE: Receipt of a billed ACP discussion, CPT codes 99497 or 99498. MAIN OUTCOME AND MEASURE: Rates of billed ACP visits were compared between high-need patients and non-high-need patients. Rates were adjusted for the 65+ population for sex, age, race/ethnicity, Charlson comorbidity index, Medicare/Medicaid dual eligibility status, and Hospital Referral Region. RESULTS: Among the 65+ groups, those most likely to have a billed ACP discussion included seriously ill and frail (5.2%), seriously ill (4.2%), and frail (3.3%). Rates remained consistent after adjusting (4.5%, 4.0%, 3.1%, respectively). Each subgroup differed significantly (p \u3c .05) from non-high need beneficiaries (2.3%) in both unadjusted and adjusted analyses. Among the \u3c 65 high need groups, the rates were 2.7% for ESRD and 1.3% for the disabled (the latter p \u3c .05 compared with non-high needs). CONCLUSIONS AND RELEVANCE: While rates of billed ACP discussions varied among patient groups with high medical needs, overall they were relatively low, even among a cohort of patients for whom ACP may be especially relevant

The "Conversation" about Loss : Understanding How Chatbot Technology was Used in Supporting People in Grief

While conversational agents have traditionally been used for simple tasks such as scheduling meetings and customer service support, recent advancements have led researchers to examine their use in complex social situations, such as to provide emotional support and companionship. For mourners who could be vulnerable to the sense of loneliness and disruption of self-identity, such technology offers a unique way to help them cope with grief. In this study, we explore the potential benefits and risks of such a practice, through semi-structured interviews with 10 mourners who actively used chatbots at different phases of their loss. Our findings indicated seven approaches in which chatbots were used to help people cope with grief, by taking the role of listener, acting as a simulation of the deceased, romantic partner, friend and emotion coach. We then highlight how interacting with the chatbots impacted mourners’ grief experience and conclude the paper with further research opportunities

Advance care planning and health-related quality of life in Huntington disease: Results from a multicenter national study

OBJECTIVE: With Huntington disease (HD), a fatal neurodegenerative disease where the prevalence of suicidal thoughts and behavior (STB) remains elevated as compared to other neurological disorders, it is unknown whether STB and health-related quality of life (HRQoL) affect plans for the end of life or more broadly, advance care planning (ACP). Conversely, it is unknown whether ACP would provoke future changes to STB and HRQoL. Therefore, we sought to evaluate whether STB and HRQoL patient-reported outcomes (PROs) contribute to ACP and whether ACP relates to changes in STB and HRQoL at 24 months. METHODS: HD-validated clinician- and patient-assessments (i.e., HRQoL PROs) were obtained at baseline enrollment, 12 and 24 months through our multi-center study (HDQLIFE™) throughout the United States among people with premanifest, early-stage, and late-stage manifest HD. We used linear mixed-effects models to determine the relationships between STB and HRQoL at baseline and HDQLIFE End of Life Planning at follow-up. Separate linear mixed-effects models were used to assess the relationship between HDQLIFE End of Life Planning at baseline, and HRQoL and STB at 12 and 24 months. False discovery rate adjustments were used to account for multiple comparisons. RESULTS: At baseline enrollment, STB and HRQoL were not related to HDQLIFE End of Life Planning at 12 or 24 months. Similarly, at baseline, HDQLIFE End of Life Planning demonstrated no association with STB or HRQoL at 12 or 24 months. INTERPRETATION: STB and HRQoL PROs do not significantly affect patient engagement with ACP. Most importantly, engaging in ACP does not cause untoward effects on HRQoL or STB for this rare neurodegenerative disease where the lifetime prevalence of STB approaches 30%