Racial Differences in Palliative Care Use in Heart Failure Decedents.

BACKGROUND: Minoritized individuals experience greater heart failure (HF) incidence and mortality rates, yet racial disparities in palliative care (PC) in HF are unknown. METHODS: This retrospective study used electronic medical records to identify adults who were hospitalized at an academic health system and died due to HF between 2012 and 2018. Using multivariable logistic regression, we examined associations between decedents' characteristics and PC consultations (PCCs). RESULTS: Of 1987 decedents, 45.8% (n = 911) received PCCs. Black decedents had 60% greater odds of receiving PCCs (OR = 1.60; 95% CI = 1.21-2.11) than whites. Median time from PCC to death was shorter among white than Black decedents (31.2 vs 51.5 days; P = .001). Mean age at death was younger among Black than white decedents (71.3 [14.8] vs 81.8 [12.3]; P < .001) and decedents of "other" races (71.3 [14.8] vs. 80.3 [10.4]; P = .001). Black decedents were more likely than whites to receive inotropes (54.4% vs 42.3%; P < .001) and to be admitted to hospitals (39.5% vs 29.7%; P < .001) and intensive care units in their last month (30.3% vs 18.3%; P < .001). CONCLUSIONS: Findings suggest greater recognition of palliative-care needs among Black individuals with HF; however, most referrals to PC occur late in the disease trajectory.

Clinician perspectives on barriers and solutions to symptom management in cystic fibrosis.

People living with cystic fibrosis (PLwCF) experience high symptom burden. 146 clinicians completed online surveys regarding barriers and solutions to symptom management between September and October 2020. The surveys contained both closed-ended and free-text entries. The symptom management specialists that CF clinicians most wished to consult included mental health (88, 65%), palliative care (59, 41%), and pain specialists (48, 33%). Barriers to symptom management included concerns about controlled substances prescribed for symptom control causing addiction and precluding transplantation, a lack of trust and collaboration among clinical specialties, a lack of symptom management specialists with CF expertise, and a worry about the affordability of specialist-level symptom management care. Potential solutions included non-pharmacological approaches, expanding access to affordable specialist symptom management care, the creation of clinical care guidelines for symptom management in CF, and having CF clinicians and symptom management specialists work alongside each other in CF clinic to build interdisciplinary trust and education.

Poorer Caregiver Mental and Social Health Is Associated With Worse Respiratory Outcomes in Preschool Children With Recurrent Wheezing.

BACKGROUND: Mental and social health in caregivers of preschool children has been inadequately studied, but it may influence respiratory symptom recognition and management. OBJECTIVE: To identify preschool caregivers at highest risk for poor mental and social health outcomes on the basis of patient-reported outcome measures. METHODS: Female caregivers 18 to 50 years old (N = 129) with a preschool child aged 12 to 59 months with recurrent wheezing and at least 1 exacerbation in the previous year completed 8 validated patient-reported outcome measures of mental and social health. k-means cluster analysis was performed using the T score for each instrument. Caregiver/child dyads were followed for 6 months. Primary outcomes included caregiver quality of life and wheezing episodes in their preschool children. RESULTS: Three clusters of caregivers were identified: low risk (n = 38), moderate risk (n = 56), and high risk (n = 35). The high-risk cluster had the lowest life satisfaction, meaning and purpose, and emotional support and the highest social isolation, depression, anger, perceived stress, and anxiety that persisted for more than 6 months. This cluster had the poorest quality of life and marked disparities in social determinants of health. Preschool children from caregivers in the high-risk cluster had more frequent respiratory symptoms and a higher occurrence of any wheezing episode, but a lower outpatient physician utilization for wheezing management. CONCLUSIONS: Caregiver mental and social health is associated with respiratory outcomes in preschool children. Routine assessment of mental and social health in caregivers is warranted to promote health equity and improve wheezing outcomes in preschool children.

Pain experiences among those living with hidradenitis suppurativa: a qualitative study.

BACKGROUND: Pain is rated by patients with hidradenitis suppurativa (HS) as the disease's most impactful symptom. HS therapies are often insufficient to control inflammatory disease activity and pain. A better understanding of patient experiences with pain may improve patient-provider relationships and help identify strategies for addressing HS pain. OBJECTIVES: This qualitative study sought to characterize lived pain experiences of those with HS. METHODS: English-speaking patients ≥ 18 years old with a dermatologist-confirmed diagnosis of HS and an average numerical rating scale pain score of ≥ 1 over the preceding week were recruited from a single academic medical centre in Atlanta, Georgia, USA. Semistructured interviews were conducted from November 2019 to March 2020 to explore participants' HS pain experiences and the subsequent impact on their lives. Thematic saturation was reached after interviewing 21 participants. Interviews were audio recorded, transcribed, and analysed using thematic analysis. RESULTS: Among 21 study participants, the median 7-day average pain score was 6 (interquartile range 3-7; scale ranges from 0 to 10, with 10 being most pain). Participants' descriptions of pain were consistent with nociceptive pain, neuropathic pain and itch. Pain impacted multiple life domains, including physical limitations (decreased mobility and impaired sleep), decreased psychological wellbeing (irritability, depression, loss of control, and difficulty communicating pain experiences) and impaired social relationships (social isolation, intimacy problems and difficulty fulfilling social responsibilities). Although participants reported chronic discomfort, acutely painful and unpredictable HS disease flares caused more distress and quality-of-life (QoL) burden. Participants frequently treated their pain without input from the medical team, sometimes with unsafe medication doses or combinations. Factors contributing to self-management of pain included difficulty accessing timely outpatient care during disease flares and fear of stigma from healthcare providers. CONCLUSIONS: When present, HS-related pain may impact not only physical wellbeing but also mental health and relationships. In addition to therapies that target the inflammatory disease burden, treating the symptom of pain may improve patients' QoL and wellbeing. Because patients with HS have difficulty explaining their pain, proactively asking them about pain may identify unmet needs, facilitate better pain control and improve QoL. Further, the influence of HS-related pain on numerous aspects of QoL suggests the need for multidisciplinary, patient-centred approaches to HS pain management.

Solo but Not Alone: An Examination of Social and Help Networks among Community-Dwelling Older Adults without Close Family.

This study evaluates help sources for personal and health tasks of adults living in the community without a spouse or nearby children. Using data from the National Health and Aging Trends Study (NHATS), a nationally representative sample of Medicare beneficiaries ages 65 and over, we conducted a population-based study of 2998 community-dwelling adults who received assistance with personal, household, or medical tasks in the past month. Using ANOVA, we compared adults aging solo to those with spouses at home and/or children in the same state. Adults aging solo were significantly more likely to identify non-child/spouse family, friends, neighbors and paid aides as part of their social networks. Their sources of unpaid help included siblings (33%), friends (32%), and non-family (e.g., neighbors (23%)). Adults aging solo were more likely to use paid caregivers, despite having lower incomes than married peers. Interventions to support adults aging solo should incorporate diverse social/help networks.

Prevalence of unmet pain and symptom management needs in adults with cystic fibrosis.

BACKGROUND: Although people living with CF (PLwCF) commonly report pain and other symptoms, little is known regarding their experiences of living with and accessing treatment for burdensome symptoms. METHODS: PLwCF completed online questionnaires assessing symptom prevalence and distress and were also asked about experiences accessing pain and symptom treatment, using both closed-ended and free-text entries. RESULTS: Pain was the most prevalent symptom experienced among the 55 participants (76%) and the symptom that most commonly caused distress (64%). PLwCF not on CFTR modulator therapy were likelier to endorse pain as distressing (p = 0.007). Respondents expressed that their pain was commonly underrecognized and undermanaged, they desired a multi-modal approach to treatment, and noted concerns about disease progression affecting their symptom management options. CONCLUSIONS: Our study suggests that PLwCF often have unmet symptom management needs that may impair quality of life.

Barriers of Acceptance to Hospice Care: a Randomized Vignette-Based Experiment.

BACKGROUND: The per diem financial structure of hospice care may lead agencies to consider patient-level factors when weighing admissions. OBJECTIVE: To investigate if treatment cost, disease complexity, and diagnosis are associated with hospice willingness to accept patients. DESIGN: In this 2019 online survey study, individuals involved in hospice admissions decisions were randomized to view one of six hypothetical patient vignettes: "high-cost, high-complexity," "low-cost, high-complexity," and "low-cost, low-complexity" within two diseases: heart failure and cystic fibrosis. Vignettes included demographics, prognoses, goals, and medications with costs. Respondents indicated their perceived likelihood of acceptance to their hospice; if likelihood was <100%, respondents were asked the barriers to acceptance. We used bivariate tests to examine associations between demographic, clinical, and organizational factors and likelihood of acceptance. PARTICIPANTS: Individuals involved in hospice admissions decisions MAIN MEASURES: Likelihood of acceptance to hospice care KEY RESULTS: N=495 (76% female, 53% age 45-64). Likelihoods of acceptance in cystic fibrosis were 79.8% (high-cost, high-complexity), 92.4% (low-cost, high-complexity), and 91.5% (low-cost, low-complexity), and in heart failure were 65.9% (high-cost, high-complexity), 87.3% (low-cost, high-complexity), and 96.6% (low-cost, low-complexity). For both heart failure and cystic fibrosis, respondents were less likely to accept the high-cost, high-complexity patient than the low-cost, high-complexity patient (65.9% vs. 87.3%, 79.8% vs. 92.4%, both p<0.001). For heart failure, respondents were less likely to accept the low-cost, high-complexity patient than the low-cost, low-complexity patient (87.3% vs. 96.6%, p=0.004). Treatment cost was the most common barrier for 5 of 6 vignettes. CONCLUSIONS: This study suggests that patients receiving expensive and/or complex treatments for palliation may have difficulty accessing hospice.

Coprescribing of opioids and high-risk medications in the USA: a cross-sectional study with data from national ambulatory and emergency department settings.

OBJECTIVE: Describe trends in opioid plus high-risk medication coprescribing in the USA. DESIGN: Analyses of serial, cross-sectional, nationally representative data of the National Ambulatory Medical Care Survey (NAMCS) over 2007-2016 and the National Hospital Ambulatory Medical Care Survey (NHAMCS) over 2007-2018. SETTING: US ambulatory (NAMCS) and emergency department (ED, NHAMCS) settings. PARTICIPANTS: Patient visits in which the patient was 18 years and older with an opioid prescription in the NAMCS or NHAMCS databases. PRIMARY AND SECONDARY OUTCOME MEASURES: Frequency of opioid plus high-risk medication coprescribing. RESULTS: From a combined sample of 700 499 visits over 2007-2018, there were 105 720 visits (15.1%) where opioids were prescribed. n=31 825 were from NAMCS and n=73 895 were from NHAMCS. The mean prevalence of coprescription of opioids and high-risk medications for the combined NAMCS and NHAMCS sample was 18.4% in 2007, peaked at 33.2% in 2014 and declined to 23.8% in 2016. Compared with adults receiving opioid prescriptions alone, those coprescribed opioids and high-risk medications were older, more likely female, white and using private or Medicare insurance (p<0.0001). CONCLUSIONS: Coprescribing is more common in ambulatory than ED settings and has been declining, yet one in four patient visits where opioids were prescribed resulted in coprescribed, high-risk medications in 2016. Efforts and research to help lower the rates of high-risk prescribing are needed.

Application of Critical Race Theory in Palliative Care Research: A Scoping Review.

CONTEXT: Structural racism negatively impacts individuals and populations. In the medical literature, including that of palliative care, structural racism's influence on interracial differences in outcomes remains poorly examined. Examining the contribution of structural racism to outcomes is paramount to promoting equity. OBJECTIVES: We examined portrayals of race and racial differences in outcomes in the palliative care literature and created a framework using critical race theory (CRT) to aid in this examination. METHODS: We reviewed the CRT literature and iteratively developed a rubric to examine when and how differences between races are described. Research articles published in The Journal of Pain and Symptom Management presenting empiric data specifically including findings about racial differences were examined independently by three reviewers using the rubric. RESULTS: Fifty-seven articles met inclusion criteria. Articles that specifically described racial differences were common in the topic areas of quality (75% of articles), hospice (53%), palliative care services (40%) and spirituality/religion (40%). The top three reasons posited for racial differences were patient preference (26%), physician bias (23%), and cultural barriers (21%). Using the CRT rubric we found that 65% of articles posited that a racial difference was something that needed to be rectified, while articles rarely provided narrative (5%) or other data on perspectives of people of color (11%) to explain assumptions about differences. CONCLUSION: Palliative care research frequently highlights racial differences in outcomes. Articles that examine racial differences often assume that differences need to be fixed but posit reasons for differences without the narratives of those most affected by them.

Associations between demographic characteristics and unmet supportive care needs in adults with cystic fibrosis.

CONTEXT: Patients living with cystic fibrosis (CF) report impaired quality of life. Little is known about unmet supportive care needs among adults living with CF and how they are associated with demographic characteristics. OBJECTIVES: The primary objective of this study was to identify associations between demographic variables and unmet supportive care needs regarding anxiety, sadness, pain and uncertainty about the future of living with CF. METHODS: We recruited 165 adults with CF from a single academic medical centre to complete a brief demographic survey and the Supportive Care Needs Survey (SCNS-34), a validated self-reported needs assessment that measures the prevalence of and preferences for support for 34 needs that commonly occur in patients with serious illness. RESULTS: Approximately half of the participant sample was male, with a median age of 29 years, varying income levels and a range of lung disease severity. We found statistically significant associations between insufficient income and increased odds of reporting need for support regarding anxiety (OR: 6.48; 95% CI 2.08 to 20.2), sadness (OR: 6.15; 95% CI 2.04 to 18.5), pain (OR: 7.06; 95% CI 2.22 to 22.4) and worries surrounding uncertainty about the future (OR: 3.43; 95% CI 1.18 to 9.99). CONCLUSION: Adults with CF report significant unmet needs for support in several physical and emotional domains. Many of these domains were associated with demographic characteristics, most notably, income. Our findings underscore the importance of developing treatment approaches that are sensitive to patient demographics when addressing unmet supportive care needs among adults with CF.

Associations between Reason for Inpatient Palliative Care Consultation, Timing, and Cost Savings.

Background: Specialty palliative care (SPC) provides patient-centered care to people with serious illness and may reduce costs. Specific cost-saving functions of SPC remain unclear. Objectives: (1) To assess the effect of SPC on inpatient costs and length of stay (LOS) and (2) to evaluate differences in costs by indication and timing of SPC. Design: Case-control with in patients who received an SPC consultation and propensity matched controls. Setting: One large U.S. integrated delivery finance system. Measurements: Using administrative data, we assessed costs associated with inpatient stays, a subset of whom received an SPC consultation. Consultations were stratified by reasons based on physician discretion: goals of care, pain management, hospice evaluation, nonpain symptom management, or support. The primary outcome was total operating costs and the secondary outcome was hospital LOS. Results: In total, 1404 patients with SPC consultations associated with unique hospital encounters were matched with 2806 controls. Total operating costs were lower for patients who received an SPC consultation when the consultation was within 0 to 1 days of admission ($6,924 vs. $7,635, p = 0.002). Likewise, LOS was shorter (4.3 vs. 4.7 days, p < 0.001). Upon stratification by reason, goals-of-care consultations early in the hospital stay (days 0-1) were associated with reduced total operating costs ($7,205 vs. $8,677, p < 0.001). Costs were higher for pain management consultations ($7,727 vs. $6,914, p = 0.047). Consultation for hospice evaluation was associated with lower costs, particularly when early (hospital days 0-1: $4,125 vs. $7,415, p < 0.001). Conclusions: SPC was associated with significant cost saving and decreased LOS when occurring early in a hospitalization and used for goals-of-care and hospice evaluation.

The National Postdoctoral Palliative Care Research Training Collaborative: History, Activities, Challenges, and Future Goals.

Background: Palliative care-related postdoctoral training opportunities are critical to increase the quantity and quality of palliative care research. Objective: To describe the history, activities, challenges, and future goals of the National Postdoctoral Palliative Care Research Training Collaborative. Design: National web-based survey of participating program leaders. Measurements: Information about participating programs, trainees, challenges faced, and future goals. Results: Nine participating programs at academic institutions across the United States focus on diverse aspects of palliative care research. The majority of 73 current and former fellows are female (75%) and white (84%). In total, 38% of fellows (n = 28) have MD backgrounds, of whom less than half (n = 12) completed hospice and palliative medicine fellowships. An additional 38% of fellows (n = 28) have nursing PhD backgrounds and 23% (n = 17) have other diverse types of PhD backgrounds. Key challenges relate to recruiting diverse trainees, fostering a shared identity, effectively advocating for trainees, and securing funding. Future goals include expanding efforts to engage clinician and nonclinician scientists, fostering the pipeline of palliative care researchers through expanded mentorship of predoctoral and clinical trainees, increasing the number of postdoctoral palliative care training programs, and expanding funding support for career development grants. Conclusion: The National Postdoctoral Palliative Care Research Training Collaborative fills an important role in creating a community for palliative care research trainees and developing strategies to address shared challenges.

Quality versus risk of bias assessment of palliative care trials: comparison of two tools.

BACKGROUND: Randomised controlled trials (RCTs) of palliative care interventions are challenging to conduct and evaluate. Tools used to judge the quality of RCTs do not account for the complexities of conducting research in seriously ill populations and may artificially downgrade confidence in palliative care research. OBJECTIVE: To compare assessments from the Palliative Care Trial Assessment Tool (PCTAT) and Cochrane Risk of Bias (RoB) tool. DESIGN: Reviewers assessed 43 RCTs using PCTAT and RoB. We compared assessments of each trial, assessed overall agreement (weighted kappa (Kw)) and examined (dis)agreement for comparable items. We assessed quality of life at 1-3 months among trials grouped according to RoB or PCTAT score (using meta-analysis) and whether RoB or quality improved over time (Cochran-Armitage trend test). RESULTS: Of 43 trials, those rated low RoB had a mean PCTAT score of 73 (SD 10); those rated high RoB had a mean PCTAT score of 56 (SD 14). Overall Kw was 0.33 (95% CI 0.19 to 0.42). Total agreement between comparable items was observed for 56% of trials (24/43) and total disagreement for 21% (8/43). The standardised mean difference in quality of life was statistically significant among RCTs with low RoB and high PCTAT, but not for those with medium/low PCTAT or high/unclear RoB. Quality of reporting improved over time, whereas RoB did not. CONCLUSION: Although there was fair agreement between tools, areas of disagreement/non-comparability suggest the tools capture different aspects of bias/quality. A specific tool to evaluate quality of palliative care trials may be warranted.

Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness: A Systematic Review and Meta-analysis.

Importance: The evidence for palliative care exists predominantly for patients with cancer. The effect of palliative care on important end-of-life outcomes in patients with noncancer illness is unclear. Objective: To measure the association between palliative care and acute health care use, quality of life (QOL), and symptom burden in adults with chronic noncancer illnesses. Data Sources: MEDLINE, Embase, CINAHL, PsycINFO, and PubMed from inception to April 18, 2020. Study Selection: Randomized clinical trials of palliative care interventions in adults with chronic noncancer illness. Studies involving at least 50% of patients with cancer were excluded. Data Extraction and Synthesis: Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all trials. All outcomes were analyzed using random-effects meta-analysis. Main Outcomes and Measures: Acute health care use (hospitalizations and emergency department use), disease-generic and disease-specific quality of life (QOL), and symptoms, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-Palliative Care scale (range, 0 [worst] to 184 [best]; minimal clinically important difference, 9 points) and symptoms translated to units of the Edmonton Symptom Assessment Scale global distress score (range, 0 [best] to 90 [worst]; minimal clinically important difference, 5.7 points). Results: Twenty-eight trials provided data on 13 664 patients (mean age, 74 years; 46% were women). Ten trials were of heart failure (n = 4068 patients), 11 of mixed disease (n = 8119), 4 of dementia (n = 1036), and 3 of chronic obstructive pulmonary disease (n = 441). Palliative care, compared with usual care, was statistically significantly associated with less emergency department use (9 trials [n = 2712]; 20% vs 24%; odds ratio, 0.82 [95% CI, 0.68-1.00]; I2 = 3%), less hospitalization (14 trials [n = 3706]; 38% vs 42%; odds ratio, 0.80 [95% CI, 0.65-0.99]; I2 = 41%), and modestly lower symptom burden (11 trials [n = 2598]; pooled standardized mean difference (SMD), -0.12; [95% CI, -0.20 to -0.03]; I2 = 0%; Edmonton Symptom Assessment Scale score mean difference, -1.6 [95% CI, -2.6 to -0.4]). Palliative care was not significantly associated with disease-generic QOL (6 trials [n = 1334]; SMD, 0.18 [95% CI, -0.24 to 0.61]; I2 = 87%; Functional Assessment of Chronic Illness Therapy-Palliative Care score mean difference, 4.7 [95% CI, -6.3 to 15.9]) or disease-specific measures of QOL (11 trials [n = 2204]; SMD, 0.07 [95% CI, -0.09 to 0.23]; I2 = 68%). Conclusions and Relevance: In this systematic review and meta-analysis of randomized clinical trials of patients with primarily noncancer illness, palliative care, compared with usual care, was statistically significantly associated with less acute health care use and modestly lower symptom burden, but there was no significant difference in quality of life. Analyses for some outcomes were based predominantly on studies of patients with heart failure, which may limit generalizability to other chronic illnesses.

Social Determinants and Military Veterans' Suicide Ideation and Attempt: a Cross-sectional Analysis of Electronic Health Record Data.

BACKGROUND: Health care systems struggle to identify risk factors for suicide. Adverse social determinants of health (SDH) are strong predictors of suicide risk, but most electronic health records (EHR) do not include SDH data. OBJECTIVE: To determine the prevalence of SDH documentation in the EHR and how SDH are associated with suicide ideation and attempt. DESIGN: This cross-sectional analysis included EHR data spanning October 1, 2015-September 30, 2016, from the Veterans Integrated Service Network Region 4. PARTICIPANTS: The study included all patients with at least one inpatient or outpatient visit (n = 293,872). MAIN MEASUREMENTS: Adverse SDH, operationalized using Veterans Health Administration (VHA) coding for services and International Statistical Classification of Diseases and Related Health Problems (ICD)-10 codes, encompassed seven types (violence, housing instability, financial/employment problems, legal problems, familial/social problems, lack of access to care/transportation, and nonspecific psychosocial needs). We defined suicide morbidity by ICD-10 codes and data from the VHA's Suicide Prevention Applications Network. Logistic regression assessed associations of SDH with suicide morbidity, adjusting for socio-demographics and mental health diagnoses (e.g., major depression). Statistical significance was assessed with p < .01. KEY RESULTS: Overall, 16.4% of patients had at least one adverse SDH indicator. Adverse SDH exhibited dose-response-like associations with suicidal ideation and suicide attempt: each additional adverse SDH increased odds of suicidal ideation by 67% (AOR = 1.67, 99%CI = 1.60-1.75; p < .01) and suicide attempt by 49% (AOR = 1.49, 99%CI = 1.33-1.68; p < .01). Independently, each adverse SDH had strong effect sizes, ranging from 1.86 (99%CI = 1.58-2.19; p < .01) for legal issues to 3.10 (99%CI = 2.74-3.50; p < .01) for non-specific psychosocial needs in models assessing suicidal ideation and from 1.58 (99%CI = 1.10-2.27; p < .01) for employment/financial problems to 2.90 (99%CI = 2.30-4.16; p < .01) for violence in models assessing suicide attempt. CONCLUSIONS: SDH were strongly associated with suicidal ideation and suicide attempt even after adjusting for mental health diagnoses. Integration of SDH data in EHR could improve suicide prevention.

Prevalence of unmet palliative care needs in adults with cystic fibrosis.

BACKGROUND: Physical and emotional burdens impair quality of life (QoL) in many adults with cystic fibrosis (CF). Palliative care (PC) improves QoL in other serious illnesses, yet the full array of palliative needs amenable to PC are unknown in CF. METHODS: We surveyed 164 adults with CF using the Supportive Care Needs Survey 34 (SCNS-34) to assess unmet PC needs across five domains, the Edmonton Symptom Assessment System (ESAS) to assess symptom burden, and the Cystic Fibrosis Questionnaire-Revised (CFQ-R) to assess CF-specific QoL. We assessed associations between SCNS-34 domain scores and respondent characteristics, including symptom burden and FEV1. RESULTS: Median age was 29 years; 56% of respondents were male. Median FEV1 was 57% predicted. 78% of respondents reported ≥1 unmet PC need; physical and daily living (72%) and psychological (66%) needs were most prevalent. Symptom burden was correlated with all SCNS-34 domains scores, and strongly correlated with the physical (r = 0.79) and psychological (r = 0.72) domain scores. FEV1 was moderately inversely correlated with the physical domain score (r = -0.41). Forty-four of the 45 inverse correlations between SCNS-34 domain scores and CFQ-R domain scores were significant. Patient-reported depressive and anxiety symptoms were significantly associated with higher scores in five and four SCNS-34 domains, respectively. CONCLUSIONS: Adults with CF have substantial unmet PC needs. Patient-reported symptom burden is more strongly associated with reporting unmet PC needs than FEV1. Routine screening of unmet PC needs, using tools such as the SCNS-34, may enable CF care teams to optimize the provision of primary and specialist PC.

Symptom Burden and Unmet Existential Needs in Adults With Cystic Fibrosis.

Although patients with cystic fibrosis (CF) experience many symptoms and impaired quality of life, little is known about existential distress. This multivariable logistic regression evaluated the relationship between symptom burden and five existential needs representing existential distress in 164 adults with CF. Eleven percent of participants reported no symptom burden, 61% mild burden, and 28% moderate/severe burden. The most prevalent existential needs were fears about CF worsening (50%) and uncertainty about the future (39%). Participants with moderate/severe symptom burden were likelier to report needing support with all five needs than participants with no or mild burden. For each six-point increase in burden, there was an increased odds of reporting need for support with learning to feel in control, feelings about death and dying, fears about CF worsening, uncertainty about the future, and concerns about worries of others. CF-specific palliative care support based on these prevalent unmet existential needs should be developed and provided.

Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities.

Patients with heart failure (HF) and their families experience stress and suffering from a variety of sources over the course of the HF experience. Palliative care is an interdisciplinary service and an overall approach to care that improves quality of life and alleviates suffering for those living with serious illness, regardless of prognosis. In this review, we synthesize the evidence from randomized clinical trials of palliative care interventions in HF. While the evidence base for palliative care in HF is promising, it is still in its infancy and requires additional high-quality, methodologically sound studies to clearly elucidate the role of palliative care for patients and families living with the burdens of HF. Yet, an increase in attention to primary palliative care (e.g., basic physical and emotional symptom management, advance care planning), provided by primary care and cardiology clinicians, may be a vehicle to address unmet palliative needs earlier and throughout the illness course.