Family Meetings in Palliative Care: Benefits and Barriers.

OPINION STATEMENT: Specialists in palliative care view the family meeting as a means to engage patients and their families in a serious illness discussion that may clarify the values of patients and caregivers, provide information, determine care preferences, and identify sources of illness-related distress and burden. The family meeting is considered the best practice for achieving patient- and family-centered care in palliative care. Although studies of the family meeting are limited, those extant suggest that these interventions may reduce caregiver distress, mitigate the perception of unmet needs, prepare family members for caregiving, and improve bereavement outcomes. The experience of palliative care specialists further suggests that the family meeting may reinforce the therapeutic alliance with families, promote consensus, and reduce the need for ad hoc meetings. Physician satisfaction may be enhanced when the treatment plan includes the opportunity to show empathy and see the family's perspective-core elements of the clinical approach to the family meeting. In the oncology setting, the potential to achieve these positive outcomes supports the integration of the family meeting into practice. Clinical skills for the planning and running of family meetings should be promoted with consideration of a standardized protocol for routine family meetings at critical points during the illness and its treatment using an interdisciplinary team. Further research is needed to refine understanding of the indications for the family meeting and determine the optimal timing, structure, and staffing models. Outcome studies employing validated measures are needed to better characterize the impact of family meetings on patient and family distress and on treatment outcomes. Although better evidence is needed to guide the future integration of the family meeting into oncology practice, current best practices can be recommended based on available data and the extensive observations of palliative care specialists.

Prescription Opioids Dispensed to Patients with Cancer with Bone Metastasis: 2011-2017.

Opioid therapy is a first-line approach for moderate-to-severe pain associated with cancer with bone metastasis (CBM). The decade-long decline in opioid prescribing in the U.S. would not be expected to affect patients with CBM. We investigated trends in opioids dispensed to patients with CBM using data from a large commercial claims database. From 2011 quarter 2 to 2017 quarter 4, the percentage of patients with CBM prescribed at least 1 day of opioids in a quarter declined from 28.1% to 24.5% (p < .001) for privately insured patients aged 18-64 years and from 39.1% to 30.5% (p < .001) for Medicare Advantage (MA) patients aged 65 years or older. Among patients with at least 1 day of opioids in a quarter, the average morphine milligram equivalents dispensed declined by 37% and 11% (p < .001 for both) for privately insured and MA patients, respectively. Our findings raise concerns about potential unintended consequences related to population-level reduction in opioid prescribing.

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.

Web-Based Cognitive Behavior Therapy for Chronic Pain Patients with Aberrant Drug-Related Behavior: Outcomes from a Randomized Controlled Trial.

Objective: There is high unmet need for effective behavioral treatments for chronic pain patients at risk for or with demonstrated histories of opioid misuse. Despite growing evidence supporting technology-based delivery of self-management interventions for chronic pain, very few such programs target co-occurring chronic pain and aberrant drug-related behavior. This randomized controlled trial evaluated the effectiveness of a novel, web-based self-management intervention, grounded in cognitive behavior therapy, for chronic pain patients with aberrant drug-related behavior. Methods: Opioid-treated chronic pain patients at a specialty pain practice who screened positive for aberrant drug-related behavior (N = 110) were randomized to receive treatment as usual plus the web-based program or treatment as usual alone. The primary outcomes of pain severity, pain interference, and aberrant drug-related behavior, and the secondary outcomes of pain catastrophizing and pain-related emergency department visits, were assessed during the 12-week intervention and at one and three months postintervention. Results: Patients assigned to use the web-based program reported significantly greater reductions in aberrant drug-related behavior, pain catastrophizing, and pain-related emergency department visits-but not pain severity or pain interference-relative to those assigned to treatment as usual. The positive outcomes were observed during the 12-week intervention and for three months postintervention. Conclusions: A web-based self-management program, when delivered in conjunction with standard specialty pain treatment, was effective in reducing chronic pain patients' aberrant drug-related behavior, pain catastrophizing, and emergency department visits for pain. Technology-based self-management tools may be a promising therapeutic approach for the vulnerable group of chronic pain patients who have problems managing their opioid medication.

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.

How well do medical oncologists manage chronic cancer pain? A national survey.

BACKGROUND: Cancer pain is usually managed by oncologists, occasionally with input from specialists in hospice and palliative medicine (PLM) or pain medicine (PMD). We evaluated the knowledge of cancer pain management in these three specialty groups. METHODS: Eight vignettes depicting challenging scenarios of patients with poorly controlled pain were developed; each had five or six treatment choices. Respondents indicated choices likely to be safe and efficacious as "true" and choices likely to be unsafe or inefficacious as "false." Two questionnaires were created, each with four vignettes. Three anonymous mailings targeted geographically representative U.S. samples of 570 oncologists, 266 PMD specialists, and 280 PLM specialists, each randomly assigned one version of the questionnaire. Vignette scores were normalized to a 0-100 numeric rating scale (NRS); a score of 50 indicates that the number of correct choices equals the number of incorrect choices (consistent with guessing). RESULTS: Overall response rate was 49% (oncologists, 39%; PMD specialists, 48%; and PLM specialists, 70%). Average vignette score ranges were 53.2-66.5, 45.6-65.6, and 50.8-72.0 for oncologists, PMD specialists, and PLM specialists, respectively. Oncologists scored lower than PLM specialists on both questionnaires and lower than PMD specialists on one. On a 0-10 NRS, oncologists rated their ability to manage pain highly (median 7, with an interquartile range [IQR] of 5-8). Lower ratings were assigned to pain-related training in medical school (median 3, with an IQR of 2-5) and residency/fellowship (median 5, with an IQR of 4-7). Oncologists older than 46-47 years rated their training lower than younger oncologists. CONCLUSION: These data suggest that oncologists and other medical specialists who manage cancer pain have knowledge deficiencies in cancer pain management. These gaps help clarify the need for pain management education.

Educating Social Workers in Palliative and End-of-Life Care: Development and Implementation of a New National Training Program.

Background: Educating Social Workers in Palliative and End-of-Life Care (ESPEC) is a nationally scalable continuing education program designed to improve the knowledge and skills of frontline health social workers caring for patients with serious illness. Objectives: This article describes ESPEC's rationale, development, and initial implementation. Design: Following the creation of consensus-derived core primary palliative care competencies for health primary care social workers based on the eight domains of palliative care outlined in the National Consensus Project Guidelines for Quality Palliative Care, an evidence-based curriculum was developed. This was used to develop a hybrid training model with a self-study component, synchronous instructor-led skills-based training, leadership training, and mentorship. The interactive curriculum incorporates patient scenarios highlighting the health social work role. Training targets high-impact skills-the biopsychosocial-spiritual assessment, advance care planning, family meetings, and interprofessional communication-and professional development. Settings/Subjects: ESPEC was launched in the United States in collaboration with the National Association of Social Workers (NASW) and the Social Work Hospice and Palliative Care Network (SWHPN). Results: The preliminary launch demonstrated high user acceptability, positive ratings for content and format, and gains in knowledge and competence. Conclusions: Data suggest that ESPEC can increase health social workers' knowledge and confidence as providers of palliative care interventions. National dissemination is ongoing.

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.

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.

Spiritual well-being in patients with advanced heart and lung disease.

OBJECTIVE: The purpose of this study was to evaluate levels of spiritual well-being over time in populations with advanced congestive heart failure (CHF) or chronic obstructive lung disease (COPD). METHOD: In a prospective, longitudinal study, patients with CHF or COPD (each n = 103) were interviewed at baseline and every 3 months for up to 30 months. At each interview, patients completed: the basic faith subscale of the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) questionnaire, the Memorial Symptom Assessment Scale (MSAS), the Rand Mental Health Inventory (MHI), the Multidimensional Index of Life Quality (MILQ), the Sickness Impact Profile (SIP), and the Short Portable Mental Health Questionnaire (SPMSQ). RESULT: The mean age was 65 years, 59% were male, 78% were Caucasian, 50% were married, 29% lived alone, and there was no significant cognitive impairment. Baseline median FACIT-Sp score was 10.0 on a scale of 0-16. FACIT-Sp scores did not change over time and multivariate longitudinal analysis revealed higher scores for black patients and lower scores for those with more symptom distress on the MSAS-Global Distress Index (GDI) (both p = 0.02). On a separate multivariate longitudinal analysis, MILQ scores were positively associated with the FACIT-Sp and the MHI, and negatively associated with the MSAS-GDI and the SIP (all p-values < 0.001). SIGNIFICANCE OF RESULTS: In advanced CHF and COPD, spiritual well-being remains stable over time, it varies by race and symptom distress, and contributes to quality of life, in combination with symptom distress, mental health and physical functioning.

Medical Marijuana Legalization and Opioid- and Pain-Related Outcomes Among Patients Newly Diagnosed With Cancer Receiving Anticancer Treatment.

Importance: The past decade saw rapid declines in opioids dispensed to patients with active cancer, with a concurrent increase in marijuana use among cancer survivors possibly associated with state medical marijuana legalization. Objective: To assess the associations between medical marijuana legalization and opioid-related and pain-related outcomes for adult patients receiving cancer treatment. Design, Setting, and Participants: This cross-sectional study used 2012 to 2017 national commercial claims data and a difference-in-differences design to estimate the associations of interest for patients residing in 34 states without medical marijuana legalization by January 1, 2012. Secondary analysis differentiated between medical marijuana legalization with and without legal allowances for retail dispensaries. Data analysis was conducted between December 2021 and August 2022. Study samples included privately insured patients aged 18 to 64 years who received anticancer treatment during the 6 months after a new breast (in women), colorectal, or lung cancer diagnosis. Exposures: State medical marijuana legalization that took effect between 2012 and 2017. Main Outcomes and Measures: Having 1 or more days of opioids, 1 or more days of long-acting opioids, total morphine milligram equivalents of any opioid dispensed to patients with 1 or more opioid days, and 1 or more pain-related emergency department visits or hospitalizations (hereafter, hospital events) during the 6 months after a new cancer diagnosis. Interaction terms were included between each policy indicator and an indicator of recent opioids, defined as having 1 or more opioid prescriptions during the 12 months before the new cancer diagnosis. Logistic models were estimated for dichotomous outcomes, and generalized linear models were estimated for morphine milligram equivalents. Results: The analysis included 38 189 patients newly diagnosed with breast cancer (38 189 women [100%]), 12 816 with colorectal cancer (7100 men [55.4%]), and 7190 with lung cancer (3674 women [51.1%]). Medical marijuana legalization was associated with a reduction in the rate of 1 or more opioid days from 90.1% to 84.4% (difference, 5.6 [95% CI, 2.2-9.0] percentage points; P = .001) among patients with breast cancer with recent opioids, from 89.4% to 84.4% (difference, 4.9 [95% CI, 0.5-9.4] percentage points; P = .03) among patients with colorectal cancer with recent opioids, and from 33.8% to 27.2% (difference, 6.5 [95% CI, 1.2-11.9] percentage points; P = .02) among patients with lung cancer without recent opioids. Medical marijuana legalization was associated with a reduction in the rate of 1 or more pain-related hospital events from 19.3% to 13.0% (difference, 6.3 [95% CI, 0.7-12.0] percentage points; P = .03) among patients with lung cancer with recent opioids. Conclusions and Relevance: Findings of this cross-sectional study suggest that medical marijuana legalization implemented from 2012 to 2017 was associated with a lower rate of opioid dispensing and pain-related hospital events among some adults receiving treatment for newly diagnosed cancer. The nature of these associations and their implications for patient safety and quality of life need to be further investigated.

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.

Delivery of an at-home transcranial direct current stimulation intervention to mitigate pain in patients with end-stage kidney disease receiving hemodialysis (ESKD/HD).

Background: Poorly controlled pain remains a problem for many patients with end-stage kidney disease requiring hemodialysis (ESKD/HD) and customary approaches to pain management (e.g., opioids, non-steroidals) confer substantial risk. Accordingly, non-pharmacologic therapies are needed for use in this population. Non-invasive transcranial Direct Current Simulation (tDCS) constitutes a promising nonpharmacologic method for pain management in affected individuals. Aims: This study seeks to: 1) determine the effects of an 8-week course of at-home tDCS vs. sham tDCS on pain intensity, pain interference, medication usage, quality of life, and mood; 2) determine if tDCS effects vary by race/ethnicity; and 3) ascertain patient satisfaction with device use. Methods: This double-blind, randomized, sham-controlled clinical trial will enroll 100 ESKD/HD patients with moderate-to-severe (≥4 on 0-10 scale) chronic pain. The active study intervention consists of 20 min of tDCS delivered over the primary motor cortex 5 days/week for 8 weeks. The comparator is a sham procedure that provides no effective stimulation. The primary outcome analysis will evaluate efficacy of tDCS for pain reduction after two months of stimulation. We will also assess the effects of treatment on analgesic consumption, pain interference, depressed mood, and quality of life. The statistical plan will include fixed classification factors for treatment (vs. sham), clinic sites, and assessment time, and the interaction of these factors adjusting for covariates (e.g., race/ethnicity, pain level). Conclusion: At-home tDCS constitutes a promising nonpharmacologic treatment for pain mitigation in persons with ESKD/HD. This unique RCT could transform the way pain is managed in this vulnerable population. Trial Registration: NCT05311956.

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.

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.

Treatment of cancer pain.

In patients with active cancer, the management of chronic pain is an essential element in a comprehensive strategy for palliative care. This strategy emphasises multidimensional assessment and the coordinated use of treatments that together mitigate suffering and provide support to the patient and family. This review describes this framework, an approach to pain assessment, and widely accepted techniques to optimise the safety and effectiveness of opioid drugs and other treatments. The advances of recent decades suggest a future that includes increased evidence-based targeting of specific analgesic interventions within an individualised plan of care that is appropriate throughout the course of illness.

Trigeminal postherpetic neuralgia responsive to treatment with capsaicin 8 % topical patch: a case report.

Postherpetic neuralgia has been variably defined but is generally understood to be pain that persists for longer than a few months after an attack of herpes zoster. Pain persists for years in approximately 10 % of those afflicted with acute herpes zoster. The likelihood of postherpetic neuralgia increases with older age, severity of the zoster, trigeminal location, and other factors. Postherpetic neuralgia is a neuropathic pain and treatment usually involves sequential trials of topical and systemic drugs; a variety of other therapies may be considered in refractory cases. A new topical capsaicin 8 % patch has been approved for this indication based on the positive studies in patients with non-trigeminal postherpetic neuralgia. Experience with the use of the capsaicin 8 % patch for trigeminal distribution neuralgia is lacking. We report a case of trigeminal postherpetic neuralgia which was safely and effectively treated with capsaicin 8 % patch.

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.