Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers.

BACKGROUND: Patients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes. METHODS: In this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy. RESULTS: Patients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning. CONCLUSIONS: A mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing. TRIAL REGISTRATION: ClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007 .

Emotional distress predicts palliative cancer care attitudes: The unique role of anger.

OBJECTIVE: Although palliative care can mitigate emotional distress, distressed patients may be less likely to engage in timely palliative care. This study aims to investigate the role of emotional distress in palliative care avoidance by examining the associations of anger, anxiety, and depression with palliative care attitudes. METHODS: Patients (N = 454) with heterogeneous cancer diagnoses completed an online survey on emotional distress and palliative care attitudes. Emotional distress was measured using the Patient-Reported Outcomes Measurement Information System anger, anxiety, and depression scales. The Palliative Care Attitudes Scale was used to measure palliative care attitudes. Regression models tested the impact of a composite emotional distress score calculated from all three symptom measures, as well as individual anger, anxiety, and depression scores, on palliative care attitudes. All models controlled for relevant demographic and clinical covariates. RESULTS: Regression results revealed that patients who were more emotionally distressed had less favorable attitudes toward palliative care (p < 0.001). In particular, patients who were angrier had less favorable attitudes toward palliative care (p = 0.013) while accounting for depression, anxiety, and covariates. Across analyses, women had more favorable attitudes toward palliative care than men, especially with regard to beliefs about palliative care effectiveness. CONCLUSIONS: Anger is a key element of emotional distress and may lead patients to be more reluctant toward timely utilization of palliative care. Although psycho-oncology studies routinely assess depression or anxiety, more attention to anger is warranted. More research is needed on how best to address anger and increase timely utilization of palliative cancer care.

Application of Terror Management Theory to End-Of-Life Care Decision-Making: A Narrative Literature Review.

Patients with serious illnesses often do not engage in discussions about end-of-life care decision-making, or do so reluctantly. These discussions can be useful in facilitating advance care planning and connecting patients to services such as palliative care that improve quality of life. Terror Management Theory, a social psychology theory stating that humans are motivated to resolve the discomfort surrounding their inevitable death, has been discussed in the psychology literature as an underlying basis of human decision-making and behavior. This paper explores how Terror Management Theory could be extended to seriously ill populations and applied to their healthcare decision-making processes and quality of care received.

Health-Related Quality of Life: A Comparative Analysis of Caregivers of People With Dementia, Cancer, COPD/Emphysema, and Diabetes and Noncaregivers, 2015-2018 BRFSS.

BACKGROUND: Many informal caregivers experience significant caregiving burden and report worsening health-related quality of life (HRQoL). Caregiver HRQoL may vary by disease context, but this has rarely been studied. PURPOSE: Informed by the Model of Carer Stress and Burden, we compared HRQoL outcomes of prevalent groups of caregivers of people with chronic illness (i.e., dementia, cancer, chronic obstructive pulmonary disease [COPD]/emphysema, and diabetes) and noncaregivers and examined whether caregiving intensity (e.g., duration and hours) was associated with caregiver HRQoL. METHODS: Using 2015-2018 Behavioral Risk Factor Surveillance System data, we identified caregivers of people with dementia (n = 4,513), cancer (n = 3,701), COPD/emphysema (n = 1,718), and diabetes (n = 2,504) and noncaregivers (n = 176,749). Regression analyses were used to compare groups. RESULTS: Caregiver groups showed small, nonsignificant differences in HRQoL outcomes. Consistent with theory, all caregiver groups reported more mentally unhealthy days than noncaregivers (RRs = 1.29-1.61, ps < .001). Caregivers of people with cancer and COPD/emphysema reported more physically unhealthy days than noncaregivers (RRs = 1.17-1.24, ps < .01), and caregivers of people with diabetes reported a similar pattern (RR = 1.24, p = .01). However, general health and days of interference of poor health did not differ between caregivers and noncaregivers. Across caregiver groups, most caregiving intensity variables were unrelated to HRQoL outcomes; only greater caregiving hours were associated with more mentally unhealthy days (RR = 1.13, p < .001). CONCLUSIONS: Results suggest that HRQoL decrements associated with caregiving do not vary substantially across chronic illness contexts and are largely unrelated to the perceived intensity of the caregiving. Findings support the development and implementation of strategies to optimize caregiver health across illness contexts.

Symptom experiences in post-treatment cancer survivors: associations with acceptance and commitment therapy constructs.

PURPOSE: Acceptance and Commitment Therapy (ACT) has improved symptom and quality-of-life outcomes in pilot research with post-treatment cancer survivors. To further test the ACT model, the present study examined relationships between ACT constructs and subgroups of post-treatment survivors based on the severity of common symptoms. METHODS: Survivors who had completed primary treatment for stage I or II cancer (N = 203) participated in this one-time survey. Latent class analysis (LCA) was used to identify subgroups of survivors based on the severity of fatigue, sleep disturbance, pain, anxiety, and depressive symptoms. Multinomial logistic regressions employing Vermunt's 3-step approach were used to examine ACT constructs (e.g., mindfulness, acceptance, values progress) as correlates of survivor subgroups based on symptoms. RESULTS: The LCA showed three survivor classes: (1) mild-to-moderate levels of all symptoms except for normal pain intensity; (2) mild anxiety, moderate fatigue, and normal levels of all other symptoms; and (3) normal levels of all symptoms. Lower mindfulness, acceptance, and values progress and higher cognitive fusion, psychological inflexibility, and values obstruction were associated with a greater likelihood of being in class 1 or 2 than in class 3. CONCLUSION: Findings are consistent with the ACT model. Survivors with greater symptom burden reported greater withdrawal from personally meaningful activities and less acceptance of their cancer diagnosis and internal experiences (e.g., thoughts, feelings, symptoms). Findings provide strong justification for further testing of ACT to reduce symptom-related suffering in cancer survivors.

Fear of Palliative Care: Roles of Age and Depression Severity.

Background: Palliative care is underutilized due in part to fear and misunderstanding, and depression might explain variation in fear of palliative care. Objective: Informed by the socioemotional selectivity theory, we hypothesized that older adults with cancer would be less depressed than younger adults, and subsequently less fearful of utilizing palliative care. Setting/Subjects: Patients predominately located in the United States with heterogeneous cancer diagnoses (n = 1095) completed the Patient-Reported Outcomes Information System (PROMIS) Depression scale and rated their fear of palliative care using the Palliative Care Attitudes Scale (PCAS). We examined the hypothesized intercorrelations, followed by a bootstrapped analysis of indirect effects in the PROCESS macro for SPSS. Results: Participants ranged from 26 to 93 years old (mean [M] = 60.40, standard deviation = 11.45). The most common diagnoses were prostate (34.1%), breast (23.3%), colorectal (17.5%), skin (15.3%), and lung (13.5%) cancer. As hypothesized, older participants had lower depression severity (r = -0.20, p < 0.001) and were less fearful of palliative care (r = -0.11, p < 0.001). Participants who were more depressed were more fearful of palliative care (r = 0.21, p < 0.001). An indirect effect (ß = -0.04, standard error = .01, 95% confidence interval: -0.06 to -0.02) suggested that depression severity may account for up to 40% of age-associated differences in fear of palliative care. Conclusions: Findings indicate that older adults with cancer are more likely to favor palliative care, with depression symptom severity accounting for age-related differences. Targeted interventions among younger patients with depressive symptoms may be helpful to reduce fear and misunderstanding and increase utilization of palliative care.

Examining Health Behaviors of Chronic Disease Caregivers in the U.S.

INTRODUCTION: Many informal caregivers experience a significant caregiving burden, which may interfere with their health behaviors. Caregiver health behaviors may vary by disease context, but this has rarely been studied. This study compares the health behaviors of prevalent groups of chronic illness caregivers (i.e., dementia, cancer, chronic obstructive pulmonary disease/emphysema, diabetes) with those of noncaregivers and examines whether caregiving intensity is associated with these behaviors. METHODS: In 2021, using pooled cross-sectional 2015-2019 Behavioral Risk Factor Surveillance System data, health behaviors (i.e., physical activity, diet, alcohol use, smoking, sleep, and influenza immunization) of caregivers of patients with dementia (n=5,525), cancer (n=4,246), chronic obstructive pulmonary disease/emphysema (n=1,959), and diabetes (n=2,853) and noncaregivers (n=203,848) were compared. Relationships between caregiving intensity (e.g., hours, type of tasks) and caregiver health behaviors were examined. Regression analyses were used to compare groups. RESULTS: Compared with noncaregivers, caregiver groups were more likely to report engaging in both risky (i.e., smoking, shorter sleep duration) and health-promoting (i.e., physical activity, vegetable consumption, abstaining from heavy drinking) behaviors, whereas nonsignificant differences were observed for influenza immunization. Longer caregiving hours and providing help with personal care were associated with poorer health behaviors (e.g., shorter sleep duration). Few differences in health behaviors were observed between caregivers of patients with dementia and other caregiver groups. CONCLUSIONS: Results suggest that caregivers are more likely to engage in both risky and health-promoting behaviors than noncaregivers. Furthermore, findings suggest that greater caregiving responsibilities are associated with certain risky health behaviors. Findings support the development and implementation of strategies to improve caregivers' health behaviors across disease contexts.

Development and acceptability of an educational video about a smoking cessation quitline for use in adult outpatient mental healthcare.

Tobacco use is a leading preventable cause of early mortality and is prevalent among adults with mental health diagnoses, especially in the southern USA. Increasing cessation resources in outpatient mental health care and targeting individuals most receptive to changing their behavior may improve cessation. Drawing on the transtheoretical model, our goals were to develop an educational video about the Louisiana Tobacco Quitline and evaluate its acceptability. We designed the video with knowledge derived from Louisiana-specific data (2016 Louisiana Adult Tobacco Survey, N = 6,469) and stakeholder feedback. Bivariate associations between demographic/tobacco-use characteristics and participants' stage of quitting (preparation phase vs. nonpreparation phase) were conducted, which informed design elements of the video. Four stakeholder advisory board meetings involving current smokers, mental health clinicians, and public health advocates convened to provide iterative feedback on the intervention. Our stakeholder advisory board (n = 10) and external stakeholders (n = 20) evaluated intervention acceptability. We found that 17.9% of Louisiana adults were current smokers, with 46.9% of them in the preparation phase of quitting. Using insights from data and stakeholders, we succeeded in producing a 2-min video about the Louisiana Tobacco Quitline which incorporated three themes identified as important by stakeholders: positivity, relatability, and approachability. Supporting acceptability, 96.7% of stakeholders rated the video as helpful and engaging. This study demonstrates the acceptability of combining theory, existing data, and iterative stakeholder feedback to develop a quitline educational video. Future research should examine whether the video can be used to reduce tobacco use.

Increasing Readiness for Early Integrated Palliative Oncology Care: Development and Initial Evaluation of the EMPOWER 2 Intervention.

CONTEXT: Early integrated palliative care improves quality of life, but palliative care programs are underutilized. Psychoeducational interventions explaining palliative care may increase patients' readiness for palliative care. OBJECTIVES: To 1) collaborate with stakeholders to develop the EMPOWER 2 intervention explaining palliative care, 2) examine acceptability, 3) evaluate feasibility and preliminary efficacy. METHODS: The research was conducted at a North American cancer center and involved 21 stakeholders and 10 patient-participants. Investigators and stakeholders iteratively developed the intervention. Stakeholders rated acceptability of the final intervention. Investigators implemented a pre-post trial to examine the feasibility of recruiting 10 patients with metastatic cancer within one month and with a ≥50% consent rate. Preliminary efficacy outcomes were changes in palliative care knowledge and attitudes. RESULTS: Using feedback from four stakeholder meetings, we developed a multimedia intervention tailored to three levels of health-literacy. The intervention provides knowledge and reassurance about the purpose and nature of palliative care, addressing cognitive and emotional barriers to utilization. Stakeholders rated the intervention and design process highly acceptable (3.78/4.00). The pilot met a priori feasibility criteria (10 patients enrolled in 14 days; 83.3% consent rate). The intervention increased palliative care knowledge by 83.1% and improved attitudes by 18.9 points on a 0 to 51 scale (Ps < 0.00001). CONCLUSIONS: This formative research outlines the development of a psychoeducational intervention about palliative care. The intervention is acceptable, feasible, and demonstrated promising pilot test results. This study will guide clinical teams in improving patients' readiness for palliative care and inform the forthcoming EMPOWER 3 randomized clinical trial.

Health Policy and Privacy Challenges Associated With Digital Technology.

Importance: Digital technology is part of everyday life. Digital interactions generate large amounts of data that can reveal information about the health of individual consumers (the digital health footprint). Objective: Τo describe health privacy challenges associated with digital technology. Design, Setting, and Participants: For this qualitative study, In-depth, semistructured, qualitative interviews were conducted with 26 key experts from diverse fields in the US between January 1 and July 31, 2018. Open-ended questions and hypothetical scenarios were used to identify sources of digital information that contribute to consumers' health-relevant digital footprints and challenges for health privacy. Participants also completed a survey instrument on which they rated the health relatedness of digital data sources. Main Outcomes and Measures: Health policy challenges associated with digital technology based on qualitative responses to expert interviews. Results: Although experts' ratings of digital data sources suggested a possible distinction between health and nonhealth data, qualitative interviews uniformly indicated that all data can be health data, particularly when aggregated across sources and time. Five key characteristics of the digital health footprint were associated with health privacy policy challenges: invisibility (people are unaware of how their data are tracked), inaccuracy (data in the digital health footprint can be inaccurate), immortality (data have no expiration date and are aggregated over time), marketability (data have immense commercial value and are frequently bought and sold), and identifiability (individuals can be readily reidentified and anonymity is nearly impossible to achieve). There are virtually no regulatory structures in the US to protect health privacy in the context of the digital health footprint. Conclusions and Relevance: The findings suggest that a sector-specific approach to digital technology privacy in the US may be associated with inadequate health privacy protections.