Meaning-centered pain coping skills training for patients with metastatic cancer: Results of a randomized controlled pilot trial.

OBJECTIVE: For patients with advanced cancer, pain is a common and debilitating symptom that can negatively impact physical, emotional, and spiritual well-being. This trial examined the feasibility and initial effects of Meaning-Centered Pain Coping Skills Training (MCPC), a cognitive-behavioral pain management intervention with an emphasis on enhancing meaning (i.e., a personal sense of purpose, worth, and significance) and peace. METHODS: We enrolled 60 adults with stage IV solid tumor cancers and moderate-severe pain between February 2021 and February 2022. Participants were randomized 1:1 to MCPC + usual care or usual care alone. Meaning-Centered Pain Coping Skills Training consisted of four weekly 60-min individual sessions via videoconference or telephone, delivered by a trained therapist using a manualized protocol. Participants completed validated measures of pain severity, pain interference, pain self-efficacy, spiritual well-being (i.e., meaning, peace, and faith), and psychological distress at baseline and 5-week and 10-week follow-ups. RESULTS: All feasibility metrics exceeded prespecified benchmarks. Fifty-eight percent of screened patients were eligible, and 69% of eligible patients consented. Of those assigned to MCPC, 93% completed all sessions and 100% of those who completed follow-ups reported using coping skills weekly. Retention was strong at 5-week (85%) and 10-week (78%) follow-ups. Meaning-Centered Pain Coping Skills Training participants reported better scores than control participants across outcome measures, including moderate-to-large sized differences at 10-week follow-up in pain severity (Cohen's d = -0.75 [95% confidence interval: -1.36, -0.14]), pain interference (d = -0.82 [-1.45, -0.20]), and pain self-efficacy (d = 0.74 [0.13, 1.35]). CONCLUSIONS: MCPC is a highly feasible, engaging, and promising approach for improving pain management in advanced cancer. Future efficacy testing is warranted. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04431830, registered 16 June 2020.

Spirituality in Serious Illness and Health.

Importance: Despite growing evidence, the role of spirituality in serious illness and health has not been systematically assessed. Objective: To review evidence concerning spirituality in serious illness and health and to identify implications for patient care and health outcomes. Evidence Review: Searches of PubMed, PsycINFO, and Web of Science identified articles with evidence addressing spirituality in serious illness or health, published January 2000 to April 2022. Independent reviewers screened, summarized, and graded articles that met eligibility criteria. Eligible serious illness studies included 100 or more participants; were prospective cohort studies, cross-sectional descriptive studies, meta-analyses, or randomized clinical trials; and included validated spirituality measures. Eligible health outcome studies prospectively examined associations with spirituality as cohort studies, case-control studies, or meta-analyses with samples of at least 1000 or were randomized trials with samples of at least 100 and used validated spirituality measures. Applying Cochrane criteria, studies were graded as having low, moderate, serious, or critical risk of bias, and studies with serious and critical risk of bias were excluded. Multidisciplinary Delphi panels consisting of clinicians, public health personnel, researchers, health systems leaders, and medical ethicists qualitatively synthesized and assessed the evidence and offered implications for health care. Evidence-synthesis statements and implications were derived from panelists' qualitative input; panelists rated the former on a 9-point scale (from "inconclusive" to "strongest evidence") and ranked the latter by order of priority. Findings: Of 8946 articles identified, 371 articles met inclusion criteria for serious illness; of these, 76.9% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for serious illness: (1) incorporate spiritual care into care for patients with serious illness; (2) incorporate spiritual care education into training of interdisciplinary teams caring for persons with serious illness; and (3) include specialty practitioners of spiritual care in care of patients with serious illness. Of 6485 health outcomes articles, 215 met inclusion criteria; of these, 66.0% had low to moderate risk of bias. The Delphi panel review yielded 8 evidence statements supported by evidence categorized as strong and proposed 3 top-ranked implications of this evidence for health outcomes: (1) incorporate patient-centered and evidence-based approaches regarding associations of spiritual community with improved patient and population health outcomes; (2) increase awareness among health professionals of evidence for protective health associations of spiritual community; and (3) recognize spirituality as a social factor associated with health in research, community assessments, and program implementation. Conclusions and Relevance: This systematic review, analysis, and process, based on highest-quality evidence available and expert consensus, provided suggested implications for addressing spirituality in serious illness and health outcomes as part of person-centered, value-sensitive care.

How Does Spiritual Well-Being Change Over Time Among US Patients with Heart Failure and What Predicts Change?

Few studies have examined how spiritual well-being changes over time in patients with heart failure. We conducted a secondary analysis of data from the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) trial (N = 314). Spiritual well-being was measured using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp) at baseline and 12-month follow-up. Of the 165 patients with spiritual well-being data at follow-up, 65 (39%) experienced probable clinically meaningful changes (> 0.5 SD) in spiritual well-being (35 improved, 30 declined). Increased pain (p = 0.04), decreased dyspnea (p < 0.01), and increased life completion (p = 0.02) were associated with improvement in overall spiritual well-being. Exploratory analyses found different predictors for FACIT-Sp subscales.

A novel decision aid for acute myeloid leukemia: a feasibility and preliminary efficacy trial.

PURPOSE: Acute myeloid leukemia (AML) is a hematologic malignancy characterized by a poor prognosis but also a paradoxical possibility of cure. This renders decision-making complex and imminent. Unfortunately, many patients with AML misestimate their prognosis and treatment risk. While decision aids can improve illness understanding and reduce decisional conflict, there are no validated decision aids for AML. We developed and tested a novel AML decision aid (NCT03442452). METHODS: Patients (n = 20) were recruited at Duke University from May 2018 to February 2019. Participants completed assessments of AML knowledge and decisional conflict, before and after using the electronic decision aid. The primary endpoint was feasibility (endpoint met if > 80% of study participants completed all study components). Secondary analyses of efficacy were conducted using paired t tests for dependent pre-/post-samples. RESULTS: The primary endpoint of feasibility was met (100% of participants completed all study components). Secondary analyses showed improved knowledge and reduced decisional conflict after using the decision aid. Knowledge scores improved from a mean of 11.8 (out of 18) correct items at baseline to 15.1 correct items after using the decision aid (mean difference 3.35; p < 0.0001). Decisional conflict scores reduced significantly from baseline to post-test as well (mean difference - 6.5; p = 0.02). CONCLUSION: These findings suggest that our AML decision aid is a useful tool to improve the patient experience and promote shared decision-making in AML. A randomized efficacy trial is planned.

Current measures of distress may not account for what's most important in existential care interventions: Results of the outlook trial.

OBJECTIVE: Compare the efficacy of two interventions addressing emotional and existential well-being in early life-limiting illness. METHOD: Primary trial analysis (n = 135) included patients with advanced cancer, congestive heart failure, or end-stage renal disease; Arm 1 received the Outlook intervention, addressing issues of life completion and preparation, and Arm 2 received relaxation meditation (RM). Primary outcomes at five weeks (primary endpoint) and seven weeks (secondary): completion and preparation (QUAL-E); secondary outcomes: anxiety (POMS) quality of life (FACT-G) and spiritual well-being (FACIT-Sp) subscales of faith, meaning, and peace. RESULTS: Average age was 62; 56% were post-high school-educated, 54% were married, 52% white, 44% female, and 70% had a cancer diagnosis. At baseline, participants demonstrated low levels of anxiety (<5 on POMS subscale) and depression (<10 on CESD) relative to population norms. Results of the primary analysis revealed no significant differences in mean Preparation by treatment arm at five weeks (14.4 Outlook vs. 14.8 RM; between-group difference -0.4 [95% CI, -1.6, 0.8], p = 0.49) or seven weeks (15.2 vs.15.4; between-group difference -0.2 [95% CI, -1.5, 1.0], p = 0.73). There were also no significant differences in mean Life Completion by treatment arm between five weeks (26.6 Outlook vs. 26.3 RM; between-group difference 0.2 [95% CI, -1.2, 1.7], p = 0.76) or seven weeks (26.5 vs. 27.5; between-group difference -1.0 [95% CI, -2.7, 0.7], p = 0.23). Compared to RM, Outlook participants did not have significant differences over time in the secondary outcomes of overall quality of life, anxiety, depression, FACT-G subscales, and FACIT-Sp subscales. DISCUSSION: In early-stage life-limiting illness, Outlook did not demonstrate a significant difference in primary or secondary outcomes relative to RM. Results underscore the importance of pre-screening for distress. Qualitatively, Outlook participants were able to express suppressed emotions, place illness context, reflect on adaptations, and strengthen identity. Screening for distress and identifying specified measures of distress, beyond anxiety and depression, is essential in our ability to adequately assess the multi-dimensional mechanisms that decrease existential suffering.

Enhancing meaning in the face of advanced cancer and pain: Qualitative evaluation of a meaning-centered psychosocial pain management intervention.

OBJECTIVES: The objectives of this study were to obtain patient evaluations of the content, structure, and delivery modality of Meaning-Centered Pain Coping Skills Training (MCPC), a novel psychosocial intervention for patients with advanced cancer and pain. MCPC aims to help patients connect with valued sources of meaning in their lives (e.g., family relationships), while providing training in evidence-based cognitive and behavioral skills (e.g., guided imagery) to reduce pain. METHODS: Semi-structured interviews were conducted with 12 patients with stage IV solid tumor cancers and persistent pain. Transcripts were analyzed using methods from applied thematic analysis. RESULTS: When evaluating MCPC's educational information and skills training descriptions, participants described ways in which this content resonated with their experience. Many coped with their pain and poor prognosis by relying on frameworks that provided them with a sense of meaning, often involving their personally held religious or spiritual beliefs. They also expressed a need for learning ways to cope with pain in addition to taking medication. A few participants offered helpful suggestions for refining MCPC's content, such as addressing common co-occurring symptoms of sleep disturbance and fatigue. Concerning MCPC's structure and delivery modality, most participants preferred that sessions include their family caregiver and described remote delivery (i.e., telephone or videoconference) as being more feasible than attending in-person sessions. SIGNIFICANCE OF RESULTS: Participants were interested in an intervention that concurrently focuses on learning pain coping skills and enhancing a sense of meaning. Using remote delivery modalities may reduce access barriers (e.g., travel) that would otherwise prevent many patients from utilizing psychosocial services.

Identifying core curricular components for behavioral health training in internal medicine residency: Qualitative interviews with residents, faculty, and behavioral health clinicians.

OBJECTIVE: Behavioral health services frequently delivered by primary care providers include care for mental health and substance abuse disorders and assistance with behavioral risk factor reduction. Internal medicine residencies in the United States lack formal expectations regarding training in behavioral health for residents. This qualitative study aimed to determine learners' and teachers' perceptions about appropriate behavioral health curricular components for internal medicine residents. METHOD: Focus groups and interviews were conducted with the following individuals from the Duke Outpatient Clinic: residents with continuity practice (n = 27), advanced practice providers (n = 2), internal medicine attending physicians (n = 4), internal medicine/psychiatry attending physicians (n = 2), and behavioral health clinicians (n = 4). A focus group leader asked regarding residents' successes and challenges in managing behavioral health issues and about specific learning components considered necessary to understand and manage these behavioral health conditions. Transcripts were coded using an editing analysis style to identify central themes and concordance/discordance between groups. RESULTS: Regarding mental health management (Theme 1), residents emphasized a need for better care coordination with specialty mental health, while attendings and behavioral health clinicians gave priority to residents' skills in primary management of mental health. Residents, attendings, and behavioral health clinicians all emphasized advanced interviewing skills (Theme 2) with subthemes: eliciting the patient's perspective, managing time in encounters, improving patients' understanding, and patient counseling. CONCLUSIONS: Internal medicine residents, attendings, and behavioral health clinicians may differ significantly in their perceptions of primary care's role in mental health care. Future internal medicine behavioral health curricula should specifically address these attitudinal differences. Curricula should also emphasize interview skills training as an essential component of behavioral health learning.

Triadic treatment decision-making in advanced cancer: a pilot study of the roles and perceptions of patients, caregivers, and oncologists.

PURPOSE: The research on cancer treatment decision-making focuses on dyads; the full "triad" of patients, oncologists, and caregivers remains largely unstudied. We investigated how all members of this triad perceive and experience decisions related to treatment for advanced cancer. METHODS: At an academic cancer center, we enrolled adult patients with advanced gastrointestinal or hematological malignancies, their caregivers, and their oncologists. Triad members completed a semi-structured qualitative interview and a survey measuring decisional conflict and perceived influence of the other triad members on treatment decisions. RESULTS: Seventeen patients, 14 caregivers, and 10 oncologists completed the study. Patients and caregivers reported little decisional regret and voiced high satisfaction with their decisions, but levels of decisional conflict were high. We found sizeable disagreement among triad members' perceptions and preferences. For example, patients and oncologists disagreed about the caregiver's influence on the decision 56% of the time. In addition, many patients and caregivers preferred to defer to their oncologist about treatment decisions, felt like no true decision existed, and disagreed with their oncologist about how many treatment options had been presented. CONCLUSIONS: Patients, caregivers, and oncologists have discordant perceptions of the cancer treatment decision-making process, and bring different preferences about how they want to make decisions. These data suggest that oncologists should assess patients' and caregivers' decisional preferences, explicitly signal that a decision needs to be made whenever approaching an important crossroads in treatment and ensure that patients and caregivers understand the full range of presented options.

Patient experiences of acute myeloid leukemia: A qualitative study about diagnosis, illness understanding, and treatment decision-making.

BACKGROUND: Patients with acute myeloid leukemia (AML) face a unique, difficult situation characterized by sudden changes in health, complex information, and pressure to make quick treatment decisions amid sizeable tradeoffs. Yet, little is known about patients' experiences with AML. We used qualitative methods to learn about their experiences with diagnosis and treatment decision-making to identify areas for improvement. METHODS: We recruited hospitalized patients with AML to participate in semi-structured qualitative interviews about their experiences being diagnosed with AML, receiving information, and making a treatment decision. Interviews were conducted during their hospitalization for induction chemotherapy. We analyzed data by using a constant comparison approach. RESULTS: Thirty-two patients completed an interview. Four main themes emerged: (a) shock and suddenness, (b) difficulty processing information, (c) poor communication, and (d) uncertainty. Patients frequently described their diagnosis as shocking. They also felt that the amount of information was too great and too difficult to process, which negatively impacted their understanding. Patients frequently described a lack of emotional support from clinicians and described uncertainty about their prognosis, the number and nature of available treatments, and what to expect from treatment. CONCLUSIONS: Acute myeloid leukemia poses a sudden, emotionally challenging, information-laden situation, where little time is available to make important decisions. This results in difficulty processing information and is sometimes complicated by a lack of emotive communication from clinicians. Results indicate a need for targeted interventions to improve AML patients' understanding of illness and treatment options and to address their traumatic experiences around diagnosis.

Effects of enhanced caregiver training program on cancer caregiver's self-efficacy, preparedness, and psychological well-being.

PURPOSE: We examined the effects of an enhanced informal caregiver training (Enhanced-CT) protocol in cancer symptom and caregiver stress management to caregivers of hospitalized cancer patients. METHODS: We recruited adult patients in oncology units and their informal caregivers. We utilized a two-armed, randomized controlled trial design with data collected at baseline, post-training, and at 2 and 4 weeks after hospital discharge. Primary outcomes were self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving. Secondary outcomes were caregiver depression, anxiety, and burden. The education comparison (EDUC) group received information about community resources. We used general linear models to test for differences in the Enhanced-CT relative to the EDUC group. RESULTS: We consented and randomized 138 dyads: Enhanced-CT = 68 and EDUC = 70. The Enhanced-CT group had a greater increase in caregiver self-efficacy for cancer symptom management and stress management and preparation for caregiving at the post-training assessment compared to the EDUC group but not at 2- and 4-week post-discharge assessments. There were no intervention group differences in depression, anxiety, and burden. CONCLUSION: An Enhanced-CT protocol resulted in short-term improvements in self-efficacy for managing patients' cancer symptoms and caregiver stress and preparedness for caregiving but not in caregivers' psychological well-being. The lack of sustained effects may be related to the single-dose nature of our intervention and the changing needs of informal caregivers after hospital discharge.

The feasibility and acceptability of a chaplain-led intervention for caregivers of seriously ill patients: A Caregiver Outlook pilot study.

OBJECTIVE: When caring for a loved one with a life-limiting illness, a caregiver's own physical, emotional, and spiritual suffering can be profound. While many interventions focus on physical and emotional well-being, few caregiver interventions address existential and spiritual needs and the meaning that caregivers ascribe to their role. To evaluate the feasibility and acceptability of the process and content of Caregiver Outlook, we employed a manualized chaplain-led intervention to improve well-being by exploring role-related meaning among caregivers of patients with a life-limiting illness. METHOD: We conducted a single-arm pre-post pilot evaluation among caregivers of patients with advanced cancer or amyotrophic lateral sclerosis (ALS). Caregivers completed three chaplain-led intervention sessions focusing on (1) a relationship review, (2) forgiveness, and (3) legacy. Outcomes administered at baseline and at 1 and 2 weeks after the intervention included quality of life, anxiety, depression, spiritual well-being, religious coping, caregiver burden, and grief. RESULTS: The sample (N = 31) included a range of socioeconomic status groups, and the average age was approximately 60 years. A third of them worked full-time. Some 74% of our participants cared for a spouse or partner, and the other quarter of the sample cared for a parent (13%), child (10%), or other close family member (3%). At baseline, participants did not demonstrate clinical threshold levels of anxiety, depression, or other indicators of distress. Outcomes were stable over time. The qualitative results showed the ways in which Caregiver Outlook was assistive: stepping back from day-to-day tasks, the opportunity to process emotions, reflecting on support received, provoking thoughts and emotions between sessions, discussing role changes, stimulating communication with others, and the anonymity of a phone conversation. Both religious and nonreligious participants were pleased with administration of the chaplain intervention. SIGNIFICANCE OF RESULTS: The acceptability and feasibility of Caregiver Outlook were demonstrated among caregivers of patients with an advanced illness. Our pilot findings suggest minor modifications to study participant screening, interventionist guidance, and the study measures.

What constitutes quality of family experience at the end of life? Perspectives from family members of patients who died in the hospital.

OBJECTIVE: Most palliative care efforts focus on assessing and improving the quality of life and quality of care for patients. Palliative care views the family as the unit of care; therefore, excellent comprehensive palliative care should also address the needs of the family and the caregiver(s). While the recent literature has offered detailed descriptions of caregiving needs in the home setting, it is crucial to describe the needs of family members who provide care for patients with advanced illness in an inpatient setting, where family members serve as the key intermediaries and decision makers. Therefore, we sought to define the relevant aspects of quality of experience for families of hospitalized patients. METHOD: We convened a series of focus groups to identify the domains important for the quality of experience of dying patients' family members. Participants included bereaved family members of patients who had died at a Veterans Administration (VA) or private academic medical center. We conducted four in-depth follow-up interviews to probe for additional details and validate our interpretation of the focus group findings. RESULTS: Participants (n = 14) ranged in age from 46 to 83, with a mean of 62. All were female; 64% were Caucasian, 21% African American, and 14% did not report their ethnicity. Content analysis yielded 64 attributes of quality of family experience constituting eight domains: completion, symptom impact, decision making, preparation, relationship with healthcare providers, affirmation of the whole person, post-death care, and supportive services. SIGNIFICANCE OF RESULTS: Our data have implications for clinical guidance in assisting family members in the inpatient palliative setting, which often includes patient incapacity for communication and decision making. They suggest the importance of developing corresponding methods to assist families with the tasks involved with life completion, being prepared for a crisis and imminent death, and post-death care. Provider communications and relationships are central to the processes of meeting the clinical needs of family members. Our findings should inform the development of measures to assess family experience.

The palliative care in heart failure trial: rationale and design.

BACKGROUND: The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life mandates greater attention to palliative care as a routine component of advanced HF management. Limited evidence exists from randomized, controlled trials supporting the use of interdisciplinary palliative care in HF. METHODS: PAL-HF is a prospective, controlled, unblinded, single-center study of an interdisciplinary palliative care intervention in 200 patients with advanced HF estimated to have a high likelihood of mortality or rehospitalization in the ensuing 6 months. The 6-month PAL-HF intervention focuses on physical and psychosocial symptom relief, attention to spiritual concerns, and advanced care planning. The primary end point is health-related quality of life measured by the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy with Palliative Care Subscale score at 6 months. Secondary end points include changes in anxiety/depression, spiritual well-being, caregiver satisfaction, cost and resource utilization, and a composite of death, HF hospitalization, and quality of life. CONCLUSIONS: PAL-HF is a randomized, controlled clinical trial that will help evaluate the efficacy and cost effectiveness of palliative care in advanced HF using a patient-centered outcome as well as clinical and economic end points.

Validating a tool to measure spiritual beliefs, needs and resources in serious illness: The I-SPIRIT.

BACKGROUND: Seriously ill patients rely on spiritual and existential beliefs to support coping and approach crucial treatment and healthcare decisions. Yet, we lack gold standard, validated approaches to gathering information on those spiritual beliefs. Therefore, we developed I-SPIRIT, a spiritual needs and beliefs inventory for those with serious illness (IIR-10-050). METHODS: In prior work to develop measure content, we interviewed a total of 74 participants: 20 patients (veterans with Stage IV cancer, CHF, COPD, ESRD), 19 caregivers, 14 chaplains, 10 social workers, 12 nurses, and 5 physicians. Using directed content analyses, we identified over 50 attributes of spiritual experience comprising five domains: overall importance of spirituality; affiliations and practices; impact on decisions; spiritual needs; and spiritual resources. We then translated these attributes into individual items with Likert response scales. In the quantitative validation of I-SPIRIT, we administered the instrument and a battery of comparison measures to 249 seriously ill veterans. The comparison measures captured general spiritual well-being, religious coping, and emotional functioning. Convergent and discriminant validity was examined with the FACIT-sp (faith, meaning, and purpose), BMMRS (religious/spirituality), POMS and PHQ-8 (emotional function), and FACT-G (quality of life). We administered the I-SPIRIT a week later, for test-retest reliability. RESULTS: Psychometric analyses yielded a final I-SPIRIT Tool including 30 items. Results demonstrated reliability and validity and yielded a tool with three main components: Spiritual Beliefs (seven items); Spiritual Needs (nine items); and Spiritual Resources (14 items). The Spiritual Beliefs items include key practices and affiliations, and impact of beliefs on healthcare. Higher levels of Spiritual Needs were associated with higher anxiety and depression. CONCLUSION: The I-Spirit measures relevance of spirituality, spiritual needs and spiritual resources and demonstrates validity, reliability, and acceptability for patients with serious illness.

Design and pilot test of an implicit bias mitigation curriculum for clinicians.

Introduction: Clinician implicit racial bias (IB) may lead to lower quality care and adverse health outcomes for Black patients. Educational efforts to train clinicians to mitigate IB vary widely and have insufficient evidence of impact. We developed and pilot-tested an evidence-based clinician IB curriculum, "REACHing Equity." Methods: To assess acceptability and feasibility, we conducted an uncontrolled one-arm pilot trial with post-intervention assessments. REACHing Equity is designed for clinicians to: (1) acquire knowledge about IB and its impact on healthcare, (2) increase awareness of one's own capacity for IB, and (3) develop skills to mitigate IB in the clinical encounter. We delivered REACHing Equity virtually in three facilitated, interactive sessions over 7-9 weeks. Participants were health care providers who completed baseline and end-of-study evaluation surveys. Results: Of approximately 1,592 clinicians invited, 37 participated, of whom 29 self-identified as women and 24 as non-Hispanic White. Attendance averaged 90% per session; 78% attended all 3 sessions. Response rate for evaluation surveys was 67%. Most respondents agreed or strongly agreed that the curriculum objectives were met, and that REACHing Equity equipped them to mitigate the impact of implicit bias in clinical care. Participants consistently reported higher self-efficacy for mitigating IB after compared to before completing the curriculum. Conclusions: Despite apparent barriers to clinician participation, we demonstrated feasibility and acceptability of the REACHing Equity intervention. Further research is needed to develop objective measures of uptake and clinician skill, test the impact of REACHing Equity on clinically relevant outcomes, and refine the curriculum for uptake and dissemination.ClinicalTrials.gov ID: NCT03415308.

"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System.

Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a thematic analysis of Muslim parents' interactions with the AHCS and how their background informs their approach to care. Methods: This was a qualitative study of Muslim parents of children with life-limiting conditions in the Research Triangle Area from December 2019 to March 2019. We conducted semistructured interviews with parents to assess their experiences with the AHCS. We probed interview transcripts using descriptive content analysis with NVivo10. Results: We interviewed 10 parents in the Research Triangle Area. All patients were female, most were married, most spoke at least one other language in addition to English, and most were not born in the United States. Several themes emerged highlighting open communication with care teams, willingness to share religious affiliations, and the importance of leaning into faith and accepting God's will. Conclusions: A thematic analysis of Muslim parents' interactions with the AHCS describes value in honest communication, mixed concerns about how providers will react to their religious affiliation, and emphasizes the importance of leaning heavily into faith and accepting God's plan. Future studies evaluating needs of Muslim patients, especially those with different diagnoses, language barriers, and a larger sample size will further delineate needs to minimize inequalities in care.

Meaning-centered pain coping skills training for patients with metastatic cancer: Protocol for a randomized controlled efficacy trial.

BACKGROUND: Many patients with advanced cancer describe pain as a debilitating symptom that greatly interferes with daily activities and enjoyment of life. Psychosocial interventions can improve cancer-related pain but rarely address spiritual concerns (e.g., loss of meaning, peace), which can influence the pain experience for those facing life-threatening illness. To address these needs, we systematically developed and pilot tested a novel psychosocial intervention called Meaning-Centered Pain Coping Skills Training (MCPC). In this randomized controlled trial, we aim to determine MCPC's efficacy for reducing pain interference (primary outcome) and improving secondary outcomes. We will also estimate MCPC's cost-effectiveness. METHOD/DESIGN: Patients (target N = 210) with advanced solid tumor malignancies (Stage IV) and clinically-elevated pain interference will be enrolled and block randomized with equal allocation to MCPC + enhanced usual care or enhanced usual care alone. MCPC's four, videoconferenced, 45-60 min weekly sessions will be individually delivered by trained study therapists. Primary (pain interference) and secondary (pain severity, anxiety and depressive symptoms, pain self-efficacy, social support, spiritual well-being) patient-reported outcomes will be assessed at baseline, and 8-weeks (primary endpoint) and 12-weeks after baseline. CONCLUSION: Our MCPC intervention is the first to systematically address the biopsychosocial-spiritual aspects of pain in patients with advanced cancer. If MCPC demonstrates efficacy, next steps will involve hybrid efficacy-effectiveness and implementation work to broaden access to this brief, manualized, remotely-delivered intervention, with the goal of reducing suffering in patients with life-threatening illness.

Discussions of the kidney disease trajectory by elderly patients and nephrologists: a qualitative study.

BACKGROUND: Elderly patients with advanced kidney disease experience considerable disability, morbidity, and mortality. Little is known about the impact of physician-patient interactions on patient preparation for the illness trajectory. We sought to describe how nephrologists and older patients discuss and understand the prognosis and course of kidney disease leading to renal replacement therapy. METHODS: We conducted focus groups and interviews with 11 nephrologists and 29 patients older than 65 years with advanced chronic kidney disease or receiving hemodialysis. Interviews were audiorecorded and transcribed. We used qualitative analytic methods to identify common and recurrent themes related to the primary research question. RESULTS: We identified 6 themes that describe how the kidney disease trajectory is discussed and understood: (1) patients are shocked by their diagnosis, (2) patients are uncertain how their disease will progress, (3) patients lack preparation for living with dialysis, (4) nephrologists struggle to explain illness complexity, (5) nephrologists manage a disease over which they have little control, and (6) nephrologists tend to avoid discussions of the future. Patients and nephrologists acknowledged that prognosis discussions are rare. Patients tended to cope with thoughts of the future through avoidance by focusing on their present clinical status. Nephrologists reported uncertainty and concern for evoking negative reactions as barriers to these conversations. CONCLUSIONS: Patients and nephrologists face challenges in understanding and preparing for the kidney disease trajectory. Communication interventions that acknowledge the role of patient emotion and address uncertainty may improve how nephrologists discuss disease trajectory with patients and thereby enhance their understanding and preparation for the future.