Pain-related distress among patients referred to a community-based palliative care program.

OBJECTIVE: Numerous studies have characterized the pain reported by patients with advanced illness in terms of descriptors such as severity, but few have measured pain-related distress. Distress may be important in the clinical approach to pain. To evaluate pain-related distress among adult patients with advanced illness and pain following enrollment in an urban, specialist-level, community-based palliative care program. METHOD: In a retrospective cross-sectional analysis, data were extracted from the electronic health records of all patients who were able to complete the pain item from the Condensed Memorial Symptom Assessment Scale at the start of care. Bivariate and multivariate analyses evaluated the associations between distress and both sociodemographics and disease-related information. RESULTS: The 506 patients completing the pain item had a mean (SD) age of 70.7 years (13.8); 64.2% were women, 32.1% were Hispanic, 32.6% were white, and 27.7% were black. Of the 503 patients who indicated some level of distress on a 0-4 scale, 221 (43.7%) had high distress, defined as a score ≥3 ("quite a bit" or "very much"). Cancer diagnosis and poor performance status (unable to care for self) were predictors of high pain-related distress (both p < 0.05).Significance of resultsAmong patients with advanced illness who reported pain at the start of care by a specialist palliative care program, high pain-related distress was common, particularly among those with cancer or poor physical function. Further studies are needed to explore the extent to which pain-related distress should inform the assessment and management of pain.

Race and Ethnicity Do Not Clinically Associate with Quality of Life Among Patients with Chronic Severe Pain in a Federally Qualified Health Center.

Objective: Previous research suggests that race/ethnicity predicts health-related quality of life (HRQL) in chronic pain populations but has not examined this in community settings. This study evaluated this association in 522 community-dwelling patients with chronic pain treated at a Federally Qualified Health Center (FQHC). Design: Cross-sectional secondary analysis. Setting: Six practice sites of an FQHC in New York. Subjects: One hundred forty-two non-Hispanic blacks, 121 non-Hispanic whites, 219 Hispanics, and 40 classified as "other" with severe chronic pain. Methods: Patients with chronic severe pain (three or more months with worst pain ≥ 4/10 or T-score > 60.5 on the Patient-Reported Outcomes Measurement Information System pain interference tool) were interviewed as part of a clinical trial. Race/ethnicity and other potential predictors of HRQL were assessed. Results: Mean age was 53.0 years, and 70.1% were women; 62.8% earned less than $10,000 per year, and 22.8% were Spanish-speaking with low acculturation. Mean worst pain during the past week was 8.6/10, and 39.6% used opioids. In multivariate analyses, race/ethnicity was not significantly associated with mental HRQL. Hispanics had significantly lower physical HRQL than non-Hispanic whites or blacks, but this difference was not clinically meaningful (mean T-scores = 33.9 [Hispanics], 35.8 [non-Hispanic whites], and 35.6 [non-Hispanic blacks]). Mental HRQL was predicted by depression, anxiety, pain disability, income, and physical HRQL; physical HRQL was predicted by race/ethnicity, anxiety, pain disability, age, care satisfaction, and mental HRQL. Conclusions: Race/ethnicity does not explain important variation in HRQL reported by diverse patients with chronic pain. Psychological distress, pain disability, age, and socioeconomic status predicted this health outcome. Future studies may clarify modifiers of these associations to guide treatment in FQHC populations.

Trajectories of caregiver burden in families of adult cystic fibrosis patients.

ABSTRACTObjectives:Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. METHODS: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. RESULTS: Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. SIGNIFICANCE OF RESULTS: Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

Variation in symptom distress in underserved Chinese American cancer patients.

BACKGROUND: Cancer is prevalent in the rapidly growing Chinese American community, yet little is known about the symptom experience to guide comprehensive treatment planning. This study evaluated symptom prevalence and patient subgroups with symptom distress in a large sample of Chinese American cancer patients. METHODS: Patients were consecutively recruited from 4 oncology practices, and they completed a translated cancer symptom scale. Latent class cluster analysis was used to identify subgroups of patients with distinct symptom distress profiles. RESULTS: There were 1436 patients screened; 94.4% were non-English-speaking, and 45.1% were undergoing cancer therapy. The cancers included breast (32.6%), lung (14.8%), head and neck (12.5%), and hematologic cancer (10.1%). Overall, 1289 patients (89.8%) had 1 or more symptoms, and 1129 (78.6%) had 2 or more. The most prevalent symptoms were a lack of energy (57.0%), dry mouth (55.6%), feeling sad (49.3%), worrying (47.5%), and difficulty sleeping (46.8%). Symptoms causing "quite a bit" or "very much" distress included difficulty sleeping (37.9%), a lack of appetite (37.2%), feeling nervous (35.8%), pain (35.2%), and worrying (34.0%). Four patient subgroups were identified according to the probability of reporting moderate to high symptom distress: very low physical and psychological symptom distress (49.5%), low physical symptom distress and moderate psychological symptom distress (25.2%), moderate physical and psychological symptom distress (17.4%), and high physical and psychological symptom distress (7.8%). CONCLUSIONS: Symptom prevalence is high in community-dwelling Chinese American cancer patients, and nearly half experience severe distress (rated as "quite a bit" or "very much" distressing) from physical symptoms, psychological symptoms, or both. These data have important implications for the development of effective symptom control interventions.

Cognitive Effects and Sedation.

OBJECTIVE: Cognitive effects and sedation (CES) are prevalent in chronic nonmalignant pain populations receiving long-term opioid therapy and are among the most common reasons patients discontinue opioid use. In this narrative review, we describe the phenomenology, epidemiology, mechanisms, assessment, and management of opioid-related CES. DESIGN: We reviewed the empirical and theoretical literature on CES in opioid-treated populations with chronic pain. Data on long-term opioid therapy (≥ 3 months in duration) in chronic nonmalignant pain patients were sought. RESULTS: The phenomenology of CES includes: inattention, concentration difficulties, memory deficits, psychomotor dysfunction, perceptual distortions, and executive dysfunction and somnolence, sleep disorders, and lethargy. Deficits may be caused by unrelieved pain or opioid therapy alone, or from a combination of these and other factors. Mechanisms include central nervous system effects, for example, direct toxic effects on neurons resulting in decreased consciousness; direct effects on processing and reaction resulting in cognitive or psychomotor impairment, and inhibitory effects on cholinergic activity. Pharmacological management approaches may include opioid dose reduction and rotation or psychostimulant use. Nonpharmacological approaches may include cognitive-behavioral therapy, mindfulness-based stress reduction, acupuncture, exercise, and yoga. CONCLUSIONS: The most prevalent CES include: memory deficits (73-81%), sleep disturbance (35-57%), and fatigue (10%). At its most severe, extreme cognitive dysfunction can result in frank delirium and decreased alertness can result in coma. Emotional distress, sleep disorders, and other comorbidities and treatments can worsen CES, particularly among the elderly. Conclusions about the neuropsychological domains affected by opioids are limited due to the heterogeneity of studies and methodological issues.

Potentially Avoidable Hospitalizations Among Historically Marginalized Nursing Home Residents.

Importance: Nursing home (NH) transfers to hospitals are common and have been associated with cognitive decline; approximately 45% of NH hospital transfers are potentially avoidable hospitalizations (PAHs). Objective: To determine PAH incidence for historically marginalized NH residents with severe cognitive impairment compared with non-Hispanic White residents. Design, Setting, and Participants: This cross-sectional study merged 2018 Centers for Medicaid & Medicare Services datasets and LTCFocus, a public dataset on US NH care, for US NH residents aged 65 years and older who had a hospitalization. Analyses were performed from January to May 2022. Exposure: Race and ethnicity of NH residents. Main Outcomes and Measures: Racial and ethnic differences in resident-level annual rates of PAHs were estimated for residents with and without severe cognitive impairment (measured using the Cognitive Function Scale), controlling for resident characteristics, comorbidities, dual eligibility, and time at risk. PAHs were defined as NH hospital transfers that resulted from neglectful NH care or for which NH treatment would have been appropriate. Results: Of 2 098 385 NH residents nationwide included in the study, 7151 (0.3%) were American Indian or Alaska Native, 39 873 (1.9%) were Asian, 229 112 (10.9%) were Black or African American, 99 304 (4.7%) were Hispanic, 2785 (0.1%) were Native Hawaiian or Pacific Islander, 1 713 670 (81.7%) were White, and 6490 (0.3%) were multiracial; 1 355 143 (64.6%) were female; 128 997 (6.2%) were severely cognitively impaired; and the mean (SD) age was 81.8 (8.7) years. PAH incidence rate ratios (IRRs) were significantly greater for residents with severe cognitive impairment compared with those without. In unadjusted analyses comparing historically marginalized residents with severe cognitive impairment vs non-Hispanic White residents with severe cognitive impairment, American Indian or Alaska Native residents had a 49% higher PAH incidence (IRR, 1.49 [95% CI, 1.10-2.01]), Black or African American residents had a 64% higher incidence (IRR, 1.64 [95% CI, 1.48-1.81]), and Hispanic residents had a 45% higher incidence (IRR, 1.45 [95% CI, 1.29-1.62]). Higher incidences persisted for historically marginalized residents with severe cognitive impairment vs non-Hispanic White residents with severe cognitive impairment in adjusted analyses. Asian residents had a 24% higher PAH incidence (IRR, 1.24 [95% CI, 1.06-1.45]), Black or African American residents had a 48% higher incidence (IRR, 1.48 [95% CI, 1.36-1.60]), and Hispanic residents had a 27% higher incidence (IRR, 1.27 [95% CI, 1.16-1.39]). Conclusions and Relevance: In this cross-sectional study of PAHs, compared with non-Hispanic White NH residents, historically marginalized residents had increased PAH incidence. In the presence of severe cognitive impairment, incidence rates increased significantly compared with rates for residents without severe cognitive impairment. These results suggest that identification of residents with severe cognitive impairment and proper NH care may help prevent further cognitive decline by avoiding PAHs.

Validation of the Integrated Palliative Care Outcome Scale (IPOS) in adults with cystic fibrosis.

BACKGROUND: A primary palliative care model for cystic fibrosis (CF) recommends using the Integrated Palliative Care Outcome Scale (IPOS) for screening. Validation of the IPOS is needed. METHODS: This secondary analysis utilized baseline data from a multisite trial of the palliative care model, Improving Life with CF. Adults with CF completed the IPOS, the Memorial Symptom Assessment Scale-CF (MSAS-CF), the CF Questionnaire-Revised (CFQ-R), the Patient Health Questionnaire (PHQ-8), the Generalized Anxiety Disorder (GAD-7), and the Perceived Stress Scale (PSS). IPOS structure was assessed using Cronbach α coefficients and a factor analysis. Construct validity was evaluated through bivariate relationships between IPOS scores and other questionnaire scores, and linear regressions assessing the extent to which the IPOS explains variance in quality-of-life domains. RESULTS: The sample comprised 256 adults with complete IPOS data. α coefficients were .86 for the IPOS total score, .81 for the Physical Symptoms subscale, .79 for the Emotional Symptoms subscale, and .63 for the Communication/Practical Issues subscale. A two-component factor structure best aligned with the current subscales. IPOS scores were significantly associated with other measures; associations with MSAS-CF and CFQ-R subscales differentiated the IPOS Physical and Emotional subscales. The IPOS total score provided unique information about the variance in the CFQ-R Physical Functioning and Respiratory Symptoms domain scores. CONCLUSIONS: In adults with CF, the IPOS has acceptable internal consistency and there is evidence of construct validity. These findings support adoption of the IPOS in the primary palliative care model for CF.

Frequency, characteristics, and correlates of pain in a pilot study of colorectal cancer survivors 1-10 years post-treatment.

OBJECTIVE: The long-term effects of disease and treatment in colorectal cancer (CRC) survivors are poorly understood. This study examined the prevalence and characteristics of pain in a sample of CRC survivors up to 10 years post-treatment. DESIGN: One hundred cancer-free CRC survivors were randomly chosen from an institutional database and completed a telephone survey using the Brief Pain Inventory, Neuropathic Pain Questionnaire-Short Form, Quality of Life Cancer Survivor Summary, Brief Zung Self-Rating Depression Scale, Zung Self-Rating Anxiety Scale, and Fear of Recurrence Questionnaire. RESULTS: Participants were primarily Caucasian (90%) married (69%) males (53.5%) with a mean age of 64.7 years. Chronic pain was reported in 23% of CRC survivors, with a mean moderate intensity rating (mean = 6.05, standard deviation = 2.66) on a 0-10 rating scale. Over one-third (39%) of those with pain attributed it to their cancer or treatment. Chi-square and t-test analyses showed that survivors with pain were more likely to be female, have lower income, be more depressed and more anxious, and show a higher endorsement of suicidal ideation than CRC survivors without chronic pain. On average, pain moderately interfered with daily activity. CONCLUSIONS: Chronic pain is likely a burdensome problem for a small but not inconsequential minority of CRC survivors requiring a biopsychosocial treatment approach to improve recognition and treatment. Open dialogue between clinicians and survivors about physical and emotional symptoms in long-term follow-up is highly recommended.

A qualitative study to explore psychological distress and illness burden associated with opioid-induced constipation in cancer patients with advanced disease.

BACKGROUND: Constipation affects many patients receiving long-term opioid therapy for cancer pain. Little is known about the nature of psychological distress and the burden associated with this problem. This information may inform the development of effective treatment strategies and ameliorate distress. AIM: The objective was to use qualitative research methods to better understand psychological distress and the burden associated with opioid-induced constipation and its treatment in advanced cancer patients. DESIGN: In this qualitative study, semi-structured interviews explored perceptions of psychological distress and burden from opioid-induced constipation. Interviews were analyzed using a thematic content analysis approach involving descriptive and interpretive coding and identification of recurring themes. SETTING/PARTICIPANTS: Twelve advanced cancer patients with opioid-induced constipation were recruited from a large urban hospital. RESULTS: Patients experienced various types of negative affect and cognitions associated with opioid-induced constipation. Analyses indicated three major themes: (1) irrational thoughts and educational needs; (2) psychological distress from constipation and (3) the effects of constipation on the decision to use opioid analgesics. Irrational thoughts and educational needs included beliefs that nutrition could improve constipation, the supposition that constipation indicated deteriorating health, and catastrophic beliefs. Psychological distress included depressive symptoms and anticipatory anxiety related to constipation. Decision-making revealed cognitive dissonance about using opioids and conflicting preferences about continuing use. CONCLUSIONS: Future investigation of the multiple components of cognitive and affective burden from opioid-induced constipation is warranted. Understanding the varied nature of this burden may improve clinical recognition and assessment and promote more intensive management consistent with the distress it produces.

Timing of Goals of Care Discussions in Nursing Homes: A Systematic Review.

OBJECTIVES: Discussions between health professionals and nursing home (NH) residents or their families about the current or future goals of health care may be associated with better outcomes at the end of life (EOL), such as avoidance of unwanted interventions or death in hospital. The timing of these discussions varies, and it is possible that their influence on EOL outcomes depends on their timing. This study synthesized current evidence concerning the timing of goals of care (GOC) discussions in NHs and its impact on EOL outcomes. DESIGN: Systematic review. SETTING AND PARTICIPANTS: Adult populations in NH settings. METHODS: This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. We searched PubMed, Embase, and Cumulative Index of Nursing and Allied Health from January 2000 to September 2022. We included studies that examined timing of GOC discussions in NHs, were peer-reviewed, and published in English. Quality of the studies was assessed using the Newcastle-Ottawa Scale. RESULTS: Screening of 1930 abstracts yielded 149 papers that were evaluated for eligibility. Of the 18 articles, representing 16 distinct studies that met review criteria, 12 evaluated the timing of advance directives. There was variation in the timing of GOC discussions and compared with discussions that occurred within a month of death, earlier discussions (eg, at the time of facility admission) were associated with lower rates of hospitalization at the EOL and lower health care costs. CONCLUSIONS AND IMPLICATIONS: The timing of GOC discussions in NHs varies and evidence suggests that late discussions are associated with poorer EOL outcomes. The benefits of goal-concordant care may be enhanced by earlier and more frequent discussions. Future studies should examine the optimal timing for GOC discussions in the NH population.

Addressing Symptom Burden and Palliative Care Needs in Cystic Fibrosis: A Narrative Review of the Literature.

Among people with cystic fibrosis (CF), illness burden is multifaceted, and symptoms may fluctuate in intensity across a lifespan. Caregivers of people with CF may also experience distressing symptoms. Recent developments in CF care, including the availability of highly effective modulator therapies (HEMTs) and new palliative care guidelines promoting palliative care screening may help alleviate symptoms. The objective of this review was to present a narrative view of the recent literature on symptom burden in CF, new screening approaches informed by the Cystic Fibrosis Foundation (CFF) palliative care guidelines, and early data from studies examining the impact of HEMTs on CF symptom burden. A review of the relevant literature was conducted using Google Scholar and PubMed. Included articles covered approaches to burden assessment in CF and other chronic illnesses, epidemiology of CF symptom burden, the impact of HEMTs on symptom burden, and the CFF palliative care guidelines. A primary palliative care model implementing the CFF guidelines was also described. Results of this review show that while recent developments in CF care have led to a reduction in physical symptoms, mental health symptoms remain prevalent. Ongoing screening and triage can ensure that physical symptoms, psychological symptoms, social needs, practical problems, and communication concerns are addressed by care teams.

Development of a Cystic Fibrosis Primary Palliative Care Intervention: Qualitative Analysis of Patient and Family Caregiver Preferences.

To prevent or mitigate chronic illness burden, people with cystic fibrosis (pwCF) and their family caregivers need primary (generalist-level) palliative care from the time of diagnosis forward. We used qualitative methods to explore their preferences about a screening-and-triage model ("Improving Life with CF") developed to standardize this care. We purposively sampled and interviewed 14 pwCF and caregivers from 5 Improving Life with CF study sites. Thematic analysis was guided by a priori codes using the National Consensus Project's Guidelines for Quality Palliative Care. Participants included 7 adults and 2 adolescents with CF (3 with advanced disease), 4 parents, 1 partner (7 women; 5 people of color). Few were familiar with palliative care. Illness burden was described in multiple domains, including physical (e.g., dyspnea, pain), psychological (e.g., anxiety), and social (e.g., family well-being; impact on work/school). Most preferred survey-based screening with care coordination by the CF team. Preferences for screening approaches varied. PwCF and caregivers experience illness burden and are receptive to a CF-team delivered primary palliative care screening-and-triage model with flexible processes.

Palliative care needs among outpatient adults with cystic fibrosis: Baseline data from the Improving Life with CF trial.

BACKGROUND: Little is known about the burden of illness experienced by people with cystic fibrosis (pwCF) since the advent of CF transmembrane conductance regulator (CFTR) modulator therapies. Studies that characterize the nature of illness burden are needed to inform the development and implementation of palliative care programs that can serve this population and address quality of life concerns. METHODS: Adults with CF treated at five U.S. CF centers were surveyed to obtain baseline data for the Improving Life with CF primary palliative care implementation trial. Consenting patients completed the Integrated Palliative Care Outcome Scale (IPOS), a multidimensional measure of unmet needs for palliative care. Sociodemographic and clinical information was also obtained. The associations among these variables were examined through bivariate and multivariable analyses. RESULTS: Among 256 adults, the most distressing symptoms included not feeling "at peace", communication difficulties with family/friends, anxiety over illness or its treatment, and a lack of energy. In the multivariable analyses, CFTR modulator use was associated with lower IPOS total and physical symptoms scores; female sex and increased hospitalizations were associated with higher scores. Increased age and history of distal intestinal obstructive syndrome were associated with higher IPOS physical symptoms scores. CONCLUSIONS: These findings illuminate the nature of illness burden for pwCF in the era of CFTR modulator therapies. Although illness burden is positively affected by modulator therapy, there is a continuing need for palliative care to address physical, emotional, and spiritual distress, and the communication and practical needs experienced by adults with CF.

Low Hospice Utilization in New York State: Comparisons Using National Data.

CONTEXT: Hospice utilization in New York State (NYS) is low compared to the rest of the U.S. OBJECTIVES: The first part of a mixed-methods study elicited information from New York State stakeholders and identified 54 hospice-related barriers in nine categories, some specific to NYS. This second part used national data to examine the differences between NYS and the rest of the country by evaluating the variables associated with low NYS hospice utilization. METHODS: Ten Medicare or publicly available datasets provided data from the year prior to death for all traditional Medicare-insured patients dying in 2018. Multivariate analyses identified variables independently associated with differences in hospice enrollment or length of stay between NYS and the rest of the country. RESULTS: The NYS population was relatively older, included more women and minorities, had higher socioeconomic status (SES), and saw more physicians during the last two years of life. NYS had more physicians, more skilled nursing facility (SNF) beds, and fewer for-profit hospitals, SNFs, home care agencies, and hospice agencies. In multivariate analyses, lower NYS hospice utilization was associated with higher SES; more physicians seen during the last two years of life; more SNF beds and fewer for-profit SNF facilities; and fewer hospice agencies. CONCLUSION: NYS's low hospice utilization is independently associated with diverse factors, including those related to the health care system. Combined with information from stakeholders, these findings may help target, and inform initiatives to improve hospice utilization.

Low Hospice Utilization in New York State: Framework for Compiling and Ranking Barriers.

Background: The hospice benefit can improve end-of-life outcomes, but is underutilized, particularly in low enrollment states such as New York. Little is known about this underutilization. Objective: The first part of a mixed-methods study aimed to compile and rank barriers to hospice utilization and identify differences between New York and the rest of the United States. Setting/Subjects and Design: Clinicians, administrators, and hospice employees participated in six sessions (6-12 per session) across New York State, USA. During each session, a methodology known as nominal group technique was used to elicit barriers to hospice, identify those specific to New York, and suggest interventions to improve access. The analysis involved first categorizing and ranking barriers, and then conducting a thematic analysis of session transcripts to examine barriers specific to New York and proposed interventions to improve utilization. Results: Fifty-seven participants ranked 54 barriers, which were grouped into nine categories. These reflected concerns about clinician knowledge and attitudes or beliefs; patient and family knowledge, attitudes or beliefs, and resources; and both structural elements and practices of hospices, nursing homes, palliative care services, and other entities in the health care system. Thirteen barriers from eight categories were ranked among the top five by ≥10% of participants; only 10 of the 54 were judged to be specific to New York. Thematic analysis highlighted 14 barriers important in New York and suggested 11 interventions to improve hospice access. Conclusions: A categorization and ranking of barriers may guide future interventions to improve low hospice utilization. Novel studies with heterogeneous stakeholders are needed.

Examining Regional Differences in Nursing Home Palliative Care for Black and Hispanic Residents.

Background: Approximately one-quarter of all deaths in the United States occur in nursing homes (NHs). Palliative care has the potential to improve NH end-of-life care, but more information is needed on the provision of palliative care in NHs serving Black and Hispanic residents. Objective: To determine whether palliative care services in United States NHs are associated with differences in the concentrations of Black and Hispanic residents, respectively, and the impact by region. Design: We conducted a cross-sectional analysis. The outcome was NH palliative care services (measured by an earlier national survey); total scores ranged from 0 to 100 (higher scores indicated more services). Other data included the Minimum Data Set and administrative data. The independent variables were concentration of Black and Hispanic residents (i.e., <3%, 3-10%, >10%), respectively, and models were stratified by region (i.e., Northeast, Midwest, South and West). We compared unadjusted, weighted mean palliative care services by the concentration of Black and Hispanic residents and computed NH-level multivariable linear regressions. Setting/Subjects: Eight hundred sixty-nine (weighted n = 15,020) NHs across the United States. Results: Multivariable analyses showed fewer palliative care services provided in NHs with greater concentrations of Black and Hispanic residents. Fewer palliative care services were reported in NHs in the Northeast, for which >10% of the resident population was Black, and NHs in the West for which >10% was Hispanic versus NHs with <3% of the population being Black and Hispanic (-13.7; p < 0.001 and -9.3; p < 0.05, respectively). Conclusion: We observed differences in NH palliative care by region and with greater concentration of Black and Hispanic residents. Our findings suggest that greater investment in NH palliative care services may be an important strategy to advance health equity in end-of-life care for Black and Hispanic residents.

Pain in underserved community-dwelling Chinese American cancer patients: demographic and medical correlates.

BACKGROUND: Little is known about cancer pain in Chinese Americans. The objective of this study was to describe the epidemiology of pain in this population. This information is needed to identify and address unmet clinical needs for culturally relevant interventions targeting pain and its consequences. METHODS: A consecutive sample of underserved ethnic Chinese patients in a large community-based oncology practice was screened for persistent or frequent pain. Those patients with pain completed translated instruments assessing demographics, linguistic acculturation, disease-related characteristics, and pain-related characteristics. RESULTS: Of 312 patients screened, 178 (57.1%) reported frequent or persistent pain, 175 were eligible, and 170 participated. Most participants (85.9%) were born in China and 84.7% overall spoke Cantonese only. The most common cancers were gastrointestinal (28.2%), lung (21.8%), breast (20.6%), head and neck (12.9%), and genitourinary (4.7%); 43.5% had metastatic disease. The mean worst pain severity on a 0-10 numeric scale was 4.7 (standard deviation, 2.4), with 28.2% of patients rating their worst pain at ≥7 of 10. Although 37.6% used opioids and 47.1% used nonopioids, 45.8% reported "little" or "no" pain relief from medications. Complementary or alternative medicine therapies for cancer pain were used by 35.8%. In multiple regression analyses, worst pain was positively associated with acculturation to the English language and opioid therapy, and pain-related distress was positively associated with opioid therapy. CONCLUSION: Pain is prevalent among community-dwelling, ethnic Chinese American cancer patients. Additional studies are needed to confirm these results and investigate the finding that higher linguistic acculturation is associated with reports of more intense pain.

Development and Pilot Test of a Culturally Relevant Toolkit to Enhance Advance Care Planning With Chinese American Patients.

BACKGROUND: First-generation Chinese American patients have low engagement in advance care planning (ACP). Among the causes may be clinician uncertainty about traditional cultural values. AIM: Based on a survey identifying barriers to ACP among older ethnic Chinese American patients, we created a toolkit to support clinicians in culturally relevant ACP practices and conducted a pilot test to evaluate usability, acceptability, and preliminary outcomes. DESIGN/SETTING/PARTICIPANTS: The toolkit includes culturally relevant information and an ACP guideline with a prompt list of questions. Six clinicians (three physicians, two nurse practitioners, and one physician assistant) in two New York City-based practices piloted the toolkit through discussions with 66 patients. RESULTS: Patients' age averaged 70.2 years (SD=12.4); 56.1% were women. Almost two-thirds had not finished high school and 53.0% spoke only Cantonese. More than three-quarters (78.8%) did not understand the purpose of ACP before the discussion. During the discussion, 58 patients (87.9%) completed a new proxy naming a health care agent, 21 (31.8%) requested a nonhospital DNR order, and two (3%) completed a living will. Topics discussed included treatment preferences (discussed with 80.3% of patients); health care values (77.3%); treatment decisions (72.7%); goals of care (68.2%), and hospice (1.5%). Five of the six clinicians expressed satisfaction ("very" or "somewhat") with the toolkit, four were "very" comfortable using it, and three stated that it helped them "a lot" with effective discussions. CONCLUSIONS: An ACP toolkit may facilitate culturally relevant ACP discussions by increasing clinician competency and patient engagement. Further studies of this approach are needed.

Prevalence of Psychological Symptoms in Community-Dwelling Chinese American Patients with Chronic Cancer Pain.

Cancer is common among older Chinese American immigrants. Psychological distress may be associated with cancer pain, yet prior studies have not examined this relationship. We conducted a secondary analysis of 514 Chinese Americans with cancer-related pain. Patients completed validated questionnaires, including the Chinese Health Questionnaire-12 (CHQ-12). Analyses evaluated associations among sociodemographics, acculturation, psychological distress, and pain variables. Most patients had low acculturation and socioeconomic levels. Overall, 51.9% of patients reported moderate-severe psychological distress, 35.8% reported worst pain intensity ≥7/10 over the previous week and 41.2% had high pain-related distress. Higher CHQ-12 scores were associated with younger age (ß = -0.13); lower educational level (ß = -0.12); birthplace in China (ß = -0.18); lack of a caregiver (ß = -0.10); higher worst pain intensity (ß = 0.15); and higher pain-related distress (ß = 0.28; all p < 0.05; R2 = 0.23). Chinese American cancer patients with chronic pain experience high psychological distress, which is associated with pain characteristics and other social factors.

Models of Palliative Care Delivery for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Evidence-Informed Consensus Guidelines.

Cystic fibrosis (CF) affects more than 70,000 individuals and their families worldwide. Although outcomes for individuals with CF continue to improve, it remains a life-limiting condition with no cure. Individuals with CF manage extensive symptom and treatment burdens and face complex medical decisions throughout the illness course. Although palliative care has been shown to reduce suffering by alleviating illness-related burdens for people with serious illness and their families, little is known regarding the components and structure of various delivery models of palliative care needed to improve outcomes for people affected by CF. The Cystic Fibrosis Foundation (CFF) assembled an expert panel of clinicians, researchers, individuals with CF, and family caregivers, to develop consensus recommendations for models of best practices for palliative care in CF. Eleven statements were developed based on a systematic literature review and expert opinion, and address primary palliative care, specialty palliative care, and screening for palliative needs. These recommendations are intended to comprehensively address palliative care needs and improve quality of life for individuals with CF at all stages of illness and development, and their caregivers.