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Long COVID is associated with many symptoms, including fatigue. As some with long COVID report remission of symptoms over time, previous long COVID has become increasingly prevalent. This cross-sectional study assessed differences in fatigue and somatic symptom burden among individuals with current, previous, and no history of long COVID symptoms. An online survey was conducted with United States adults (N = 2,872), with 2,310 reporting never experiencing long COVID, 183 reporting previously experiencing long COVID, and 379 reporting currently experiencing long COVID. Multivariable linear regression analyses were used to assess the association of long COVID status with fatigue and somatic symptom burden. Participants were an average age of 41.3, with the majority identifying as female (51.7%), White (87.6%), and non-Hispanic or Latino/e (87.6%). Both fatigue and somatic symptoms were significantly higher among those with both current (ps < 0.001; d = 1.24, 1.38 respectively) and previous long COVID (ps < 0.001; d = 0.42, 0.82 respectively) compared to those reporting never having long COVID. These differences remained after accounting for health behaviors (alcohol use, tobacco use, physical activity, sleep). Long COVID, regardless of current presence, may be associated with fatigue and somatic symptom burden. [ABSTRACT FROM AUTHOR]

Aims: To elicit experiences of patients, family caregivers, and healthcare professionals in intermediate care units (IMCUs) in an academic medical centre in Baltimore, MD related to the challenges and intricacies of multimorbidity management to inform development of a multimorbidity symptom management toolkit. Design: Experience‐based co‐design. Methods: Between July and October 2021, patients aged 55 years and older with multimorbidity admitted to IMCUs at an academic medical centre in Baltimore, Maryland, USA were recruited and interviewed in person. Interdisciplinary healthcare professionals working in the IMCU were interviewed virtually. Participants were asked questions about their role in recognizing and treating symptoms, factors affecting the quality of life, symptom burden and trajectory over time, and strategies that have and have not worked for managing symptoms. An inductive thematic analysis approach was used for analysis. Results: Twenty‐three interviews were conducted: 9 patients, 2 family caregivers, and 12 healthcare professionals. Patients' mean age was 67.5 (±6.5) years, over half (n = 5) were Black or Hispanic, and the average number of comorbidities was 3.67. Five major themes that affect symptom management emerged: (1) the patient–provider relationship; (2) open and honest communication; (3) accessibility of resources during hospitalization and at discharge; (4) caregiver support, training, and education; and (5) care coordination and follow‐up care. Conclusion: Patients, caregivers, and healthcare professionals often have similar goals but different priorities for multimorbidity management. It is imperative to identify shared priorities and target holistic interventions that consider patient and caregiver experiences to improve outcomes. Implications for the Profession and/or Patient Care and Impact: This paper addresses the paucity of research related to the shared experience of disease trajectory and symptom management for people living with multimorbidity. We found that patients, caregivers, and healthcare professionals often have similar goals but different care and communication priorities. Understanding differing priorities will help better design interventions to support symptom management so people with multimorbidity can have the best possible quality of life. Reporting Method: We have adhered to the Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines in our reporting. Patient or Public Contribution: This study has been designed and implemented with patient and public involvement throughout the process, including community advisory board engagement in the project proposal phase and interview guide development, and member checking in the data collection and analysis phases. The method we chose, experience‐based co‐design, emphasizes the importance of engaging members of a community to act as experts in their own life challenges. In the coming phases of the study, the public will be involved in developing and testing a new intervention, informed by these qualitative interviews and co‐design events, to support symptom management for people with multimorbidity. [ABSTRACT FROM AUTHOR]

Social determinants of health (SDOH) are structural factors that yield health inequities. Within the context of cancer, these inequities include screening rates and survival rates, as well as higher symptom burden during and after treatment. While pain is one of the most frequently reported symptoms, the relationship between SDOHs and cancer pain is not well understood. The purpose of this study is to describe and synthesize the published research that has evaluated the relationships between SDOH and cancer pain. A systematic search of PubMed, CINAHL, and Embase was conducted to identify studies in which cancer pain and SDOH were described. In all, 20 studies met the inclusion criteria. In total, 14 studies reported a primary aim related to SDOH and cancer pain. Demographic variables including education or income were used most frequently. Six specific measurements were utilized to measure SDOH, such as the acculturation scale, the composite measure of zip codes for poverty level and blight prevalence, or the segregation index. Among the five domains of SDOH based on Healthy People 2030, social and community was the most studied, followed by economic stability, and education access and quality. The neighborhood and built environment domain was the least studied. Despite increasing attention to SDOH, the majority of published studies use single-dimension variables derived from demographic data to evaluate the relationships between SDOH and cancer pain. Future research is needed to explore the intersectionality of SDOH domains and their impact on cancer pain. Additionally, intervention studies should be conducted to address existing disparities and to reduce the incidence and impact of cancer pain. [ABSTRACT FROM AUTHOR]

Objectives Late-life depression and white matter hyperintensities (WMH) have been linked to increased dementia risk. However, there is a dearth of literature examining these relationships in Black adults. We investigated whether depression or WMH volume are associated with a higher likelihood of dementia diagnosis in a sample of late middle-aged to older Black adults, and whether dementia prevalence is highest in individuals with both depression and higher WMH volume. Methods Secondary data analysis involved 443 Black participants aged 55+ with brain imaging within 1 year of baseline visit in the National Alzheimer's Coordinating Center Uniform Data Set. Chi-square analyses and logistic regression models controlling for demographic variables examined whether active depression in the past 2 years, WMH volume, or their combination were associated with higher odds of all-cause dementia. Results Depression and higher WMH volume were associated with a higher prevalence of dementia. These associations remained after controlling for demographic factors, as well as vascular disease burden. Dementia risk was highest in the depression/high WMH volume group compared to the depression-only group, high WMH volume-only group, and the no depression/low WMH volume group. Post hoc analyses comparing the Black sample to a demographically matched non-Hispanic White sample showed associations of depression and the combination of depression and higher WMH burden with dementia were greater in Black compared to non-Hispanic White individuals. Discussion Results suggest late-life depression and WMH have independent and joint relationships with dementia and that Black individuals may be particularly at risk due to these factors. [ABSTRACT FROM AUTHOR]

Dignity therapy (DT) is a well-researched psychotherapeutic intervention but it remains unclear whether symptom burden or religious/spiritual (R/S) struggles moderate DT outcomes. To explore the effects of symptom burden and R/S struggles on DT outcomes. This analysis was the secondary aim of a randomized controlled trial that employed a stepped-wedge design and included 579 participants with cancer, recruited from six sites across the United States. Participants were ages 55 years and older, 59% female, 22% race other than White, and receiving outpatient specialty palliative care. Outcome measures included the seven-item dignity impact scale (DIS), and QUAL-E subscales (preparation for death; life completion); distress measures were the Edmonton Symptom Assessment Scale (ESAS-r) (symptom burden), and the Religious Spiritual Struggle Scale (RSS-14; R/S). DT effects on DIS were significant for patients with both low (P = 0.03) and moderate/high symptom burden (P = 0.001). They were significant for patients with low (P = 0.004) but not high R/S struggle (P = 0.10). Moderation effects of symptom burden (P = 0.054) and R/S struggle (P = 0.52) on DIS were not significant. DT effects on preparation and completion were not significant, neither were the moderation effects of the two distress measures. Neither baseline symptom burden nor R/S struggle significantly moderated the effect of DT on DIS in this sample. Further study is warranted including exploration of other moderation models and development of measures sensitive to effects of DT and other end-of-life psychotherapeutic interventions. [ABSTRACT FROM AUTHOR]

Concussion research has primarily focused on sport-related mechanisms and excluded non–sport-related mechanisms. In adult populations, non–sport-related concussions (non-SRCs) demonstrated worse clinical outcomes compared with sport-related concussions (SRCs); however, investigations of non-SRCs in college-aged patients are limited. To examine clinical outcomes in collegiate athletes with non-SRCs compared with SRCs and explore sex differences in outcomes among collegiate athletes with non-SRCs. Prospective cohort study. Clinical setting. A total of 3500 athletes were included (n = 555 with non-SRCs, 42.5% female) from colleges or universities and service academies participating in the National Collegiate Athletic Association Department of Defense Concussion Assessment, Research and Education (CARE) Consortium. Dichotomous outcomes (yes or no) consisted of immediate reporting, mental status alterations, loss of consciousness, posttraumatic amnesia, retrograde amnesia, motor impairments, delayed symptom presentation, and required hospital transport. Continuous outcomes were symptom severity, days with concussion symptoms, and days lost to injury. Data were collected within 24 to 48 hours of injury and at return to play. Adjusted relative risks (ARRs) compared the likelihood of dichotomous outcomes by mechanism and by sex within patients with non-SRCs. Multivariate negative binomial regressions were used to assess group differences in continuous variables. Athletes with non-SRCs were less likely to report immediately (ARR = 0.73, 95% CI = 0.65, 0.81) and more likely to report delayed symptom presentation (ARR = 1.17, 95% CI = 1.03, 1.32), loss of consciousness (ARR = 3.15, 95% CI = 2.32, 4.28), retrograde amnesia (ARR = 1.77, 95% CI = 1.22, 2.57), and motor impairment (ARR = 1.45, 95% CI = 1.14, 1.84). Athletes with non-SRCs described greater symptom severity, more symptomatic days, and more days lost to injury (P <.001) compared with those who had SRCs. Within the non-SRC group, female athletes indicated greater symptom severity, more symptomatic days, and more days lost to injury (P <.03) than male athletes. Athletes with non-SRCs had worse postinjury outcomes compared with those who had SRCs, and female athletes with non-SRCs had worse recovery metrics than male athletes. Our findings suggest that further investigation of individuals with non-SRCs is needed to improve concussion reporting and management. [ABSTRACT FROM AUTHOR]

1. Identify structural factors associated with GIP utilization. 2. Apply knowledge regarding GIP utilization patterns to reflect on barriers and facilitators to GIP use in one's own practice. The Medicare hospice benefit includes general inpatient care to provide patients with access to aggressive symptom management. Rather than symptom burden alone determining its use, differential patterns in regional utilization suggest structural factors play an important role in access to this level of care. Nearly one in five persons experience severe pain while dying (1). Under the Medicare hospice benefit, general inpatient care (GIP) provides intensive symptom management in a hospital, freestanding hospice inpatient unit, or nursing home. The extent to which social and structural factors impact GIP access is unknown. To examine access to GIP based on patient and hospice characteristics. We conducted a retrospective cohort study of Medicare decedents who enrolled in hospice prior to death, using the National Health and Aging Trends Study (NHATS; 2011-2018). We identified hospice enrollment and GIP utilization through linked Medicare claims data. We collected data on hospice agencies from Medicare public use files and data on decedent characteristics from the NHATS survey. Using a multivariable model that accounted for the survey design of NHATS, we compared characteristics of participants who did and did not use GIP while enrolled in hospice. Among 1,080 decedents who received hospice services, 36.5% received GIP. In adjusted analyses, the two groups did not differ by age, sex, race, income, informal caregivers or location prior to hospice enrollment. Hospice age, profit status, census, average length of stay, and CAHPS recommend and rating top box values did not affect GIP utilization. Decedents located in the west of the United States were less likely to receive GIP (OR: 0.51, CI 0.27-0.96). Even after adjustment for patient and hospice characteristics, use of GIP varied by region of the United States. Regional differences exist in access to GIP level of care. Further research is needed to examine whether limited access impacts symptom amelioration among dying hospice patients. Hospice/Models of palliative/hospice care delivery [ABSTRACT FROM AUTHOR]

1. Participants will be able to understand the pathophysiology of sickle cell disease including complications of the disease and its impact on quality of life within physical, psychological, social, racial and emotional domains. 2. Participants will be able to define the palliative care needs of patients with sickle cell disease and communicate the role of palliative care in improving the quality of life in this patient population. Palliative Care (PC) has largely been uninvolved in Sickle Cell Disease (SCD) care despite the argument that SCD patients have high symptom burden, poor quality of life, and early mortality. This talk aims to define potential roles for PC in caring for this population and hopes to garner further energy around a growing area of interest within our field. Sickle cell disease (SCD) is an inherited, life-limiting condition with significant morbidity across the lifespan; affecting 1 in every 365 Black children born in the United States and nearly 400,000 neonates born globally each year. Beginning in childhood, patients with SCD experience high symptom burden with frequent pain crises and complications from multi-organ involvement, leading to poor health-related quality of life. Those with SCD have early mortality, with an average life expectancy of approximately 50 years, and only 33 years after adjusting for quality. Coping with these challenges is made increasingly difficult by systemic racism and inequitable care. Patients with SCD are unlikely to receive palliative care (PC) support, and the literature supporting this is sparse. Many complex factors are driving this including lack of clear role delineation for PC practice in SCD care, lack of a robust evidence base to guide clinicians, and feelings that this population is out of the scope of our field. Despite these barriers, there is a growing cohort of PC providers interested in caring for this population. Patients with SCD have unmet PC needs within the physical, mental, social, functional, and spiritual domains- for which interdisciplinary PC involvement would be beneficial. The literature on advance care planning (ACP) in this population, though limited, shows that most SCD patients die in the emergency room and hospital, are unlikely to be enrolled in hospice, and have frequent healthcare utilization in the last year of life. SCD patients are interested in having these discussions- though not currently occurring, suggesting several opportunities in this arena for PC expertise. Finally, current and emerging therapies for SCD offer the possibility for cure, however come with unique challenges and opportunities for shared and complex medical decision-making. We will outline the current landscape around all of this and outline opportunities for improvement. Disease specific management / Models of Palliative Care Delivery [ABSTRACT FROM AUTHOR]

1. Identify the unique challenges and opportunities in defining the role of palliative care for patients with sickle cell disease. 2. Describe novel models of palliative care practice for patients with sickle cell disease. Sickle cell disease (SCD) is a life-limiting illness with significant morbidity across the lifespan. To date, it has been rare for SCD patients to receive palliative care support. The factors driving this include appropriately defining palliative care practice in SCD care and lacking a robust evidence base. We will lead a moderated panel discussion exploring these opportunities and challenges. Sickle cell disease (SCD) is a congenital, life-limiting illness with significant morbidity across the lifespan, affecting 1 in 500 Black patients in the United States. Starting in childhood, patients with SCD experience high symptom burden with frequent pain crises and complications from multi-organ failure. SCD also causes early mortality, with an average life expectancy of approximately fifty years. For SCD patients, coping with these challenges is made increasingly difficult by systemic racism and inequitable care in our healthcare system. To date, it has been rare for patients with SCD to receive palliative care support. The factors driving this are complex, including concern over appropriately defining palliative care practice in SCD care and the lack of a robust evidence base to help guide these discussions. Using a panel of four interdisciplinary clinicians (three physicians and one social worker) from multiple specialties (hematology, palliative care), we will lead a moderated discussion highlighting the opportunities and challenges of integrating palliative care into SCD care models. We will start with a debate contrasting the enthusiasm for this care and the immense demonstrated need, with the concern for best defining our role. We will use case examples to discuss novel practice models from our own experiences, emphasizing lessons learned and exploring how we have defined palliative care practice and integration alongside the care of other subspecialties. We will discuss our experiences with developing care models without robust evidence guiding our practice and define the research priorities to help us advance care delivery in the future. Participants will be given the opportunity to have questions answered directly by the panelists. Diversity, Equity, Inclusion, Belonging, Justice / Models of Palliative Care Delivery [ABSTRACT FROM AUTHOR]

1. Upon successful completion, participants will be able to understand the history of palliative care (PC) in sickle cell disease (SCD) and primary impetus for development of an international PC in SCD Working Group. 2. Upon successful completion, participants will be able to identify the demographic makeup, top priorities and planned deliverables defined by the members of the International Palliative Care in Sickle Cell Disease Working Group. Despite high symptom burden, poor quality of life, and early mortality, patients with Sickle Cell Disease (SCD) have infrequent access to palliative care (PC); and as a discipline, our potential role has been poorly defined. Through development of an interdisciplinary working group, we've defined objectives within research, clinical, and education subcategories to grow the literature base on PC in SCD. Sickle cell disease (SCD) is a genetic, life-limiting condition with significant morbidity across the lifespan; affecting 1 in 500 Black patients in the United States. Starting in childhood, patients with SCD experience high symptom burden with frequent pain crises and complications from multi-organ failure leading to poor health-related quality of life. Those with SCD have early mortality, with an average life expectancy of approximately fifty years, and a quality-adjusted life expectancy of only 33 years. Coping with these challenges is made increasingly difficult by systemic racism and inequitable care in our healthcare system. To date, it has been rare that patients with SCD receive palliative care (PC) support, and the literature supporting this is sparse. Many complex factors are driving this including concern over the lack of clear role delineation for PC practice in SCD care, lack of a robust evidence base to help guide clinicians, and feelings that this population is out of the scope of our field. Within this context, an increasing number of PC providers have developed an interest in expanding the reach of our field to this historically under-served population. In March 2023, a call for those interested in SCD was posted on the AAHPM Open Forum with an immense response. Since then, over 40 members have joined to form an 'International Palliative Care in Sickle Cell Disease Working Group,' with the objective of increasing and defining PC involvement within SCD care. Here we will outline results from a survey study (n=26) defining the demographic make-up of the working group, members' interest in this population and reason for joining the working group, members' justifications for PC involvement in SCD, as well as the group's top priorities and desired deliverables within four subcategories (clinical, research, education, advocacy/community). Interdisciplinary Teamwork / Professionalism; Diversity, Equity, Inclusion, Belonging, Justice [ABSTRACT FROM AUTHOR]

• Somatic and psychiatric comorbidities are common in youth with functional seizures. • Eating and weight disturbances are also prevalent. • Intensive interdisciplinary pain treatment may be effective for youth with FS. Functional seizures (FS) can be debilitating and negatively impact quality of life. Yet intervention research for FS is limited, especially for youth. This study examined clinical characteristics and outcomes of youth with FS (13–23 years) presenting to a pediatric intensive interdisciplinary pain treatment (IIPT) program in the midwestern United States. Sixty youth (mean age = 16.5 years; 83.3 % female) met inclusion criteria. At intake, comorbid chronic pain, somatic symptoms, autonomic dysfunction, eating and weight disturbances, and mental health concerns were common. Despite this high symptom burden, youth with FS reported significant improvements in functioning measured with the Functional Disability Inventory, t (53) = 9.80, p <.001, d = 1.32; depression measured with the Center for Epidemiological Studies – Depression Scale for Children, t (53) = 6.76, p <.001, d = 0.91; anxiety measured with the Spence Children's Anxiety Scale, t (53) = 3.97, p <.001, d = 0.53; and catastrophizing measured with the Pain Catastrophizing Scale for Children, t (53) = 6.44, p <.001, d = 0.86, following completion of the program, suggesting that IIPT may be an effective treatment option for highly disabled and emotionally distressed youth with FS. Future research is needed to continue to refine best practices for youth with FS to reduce suffering and improve outcomes. [ABSTRACT FROM AUTHOR]

Bladder cancer (BC) is the sixth most common cancer in the US and ∼75% of incident cases are non-muscle invasive BC (NMIBC). Current treatments differ by risk evaluation following the first transurethral resection of the bladder tumor. These include cystectomy and bladder preservation therapies (e.g., intravesical bacillus Calmette-Guérin [BCG]). While the burden of cystectomy is significant1, the burden of intravesical treatments is less well understood. This study aimed to describe the life impacts of intravesical therapies for NMIBC from the perspective of the patient. A cross-sectional online survey design was used. Study participants recruited from US patient communities were eligible if they: (1) had a self-reported diagnosis of NMIBC, (2) had intravesical treatment for NMIBC (i.e., BCG, gemcitabine, mitomycin, docetaxel, paclitaxel, epirubicin, doxorubicin) within the past year, and (3) were aged ≥18 years. Individuals were excluded if they were participating in a clinical trial, had other cancers (including muscle invasive or metastatic BC), or had been treated with erdafitinib. Prior to data collection, survey questions were evaluated for comprehension and salience to the NMIBC patient experience in one-on-one interviews. Participants' treatment experiences were evaluated using custom statements with 11-point numerical rating scales. Additionally, validated patient-reported outcome measures were used under license to capture work productivity (Work Productivity and Activity Impairment-Special Health Problem) and impacts of disease-specific symptoms (NCCN/FACT Bladder Symptom Index [FBlSI-18]). The study was approved by the WIRB-Copernicus Group Independent Review Board. Overall, 171 respondents completed the survey (average time=20 minutes; completion rate=36%). The majority were male (64%), ≥55 years old (70%), and attended college (87%). Participants frequently reported receiving BCG (83%), gemcitabine (27%), gemcitabine+docetaxel (13%), mitomycin c(12%), and docetaxel (12%) intravesically during the past year. Participants reported high levels of agreement to having intention to complete their full treatment course and willingness to try a different therapy if needed. Figure 1 shows additional details. Among participants employed for pay (n=77), notable work time missed (absenteeism=17%), impairment while at work (presenteeism=51%), overall work productivity loss (59%), and impairment in daily activities (40%) was reported for the past 7 days due to NMIBC.The FBlSI-18 scale found BC symptoms burden related to impacts on emotional (e.g., worry about their condition worsening) and functional well-being (e.g., low contentment with their HRQoL), physical symptoms (e.g., poor sleep), and bothersome treatment side effects. This study filled an important gap by describing the real-world intravesical treatment experience and its impact on the HRQoL of patients with NMIBC. Participants generally felt adequately informed about treatment, felt expectation of the treatment matched actual experience, and intended to complete their full treatment course. Participants reported high work impairment due to having NMIBC and disease symptom burden negatively impacting their well-being despite receiving intravesical treatment. Overall, these results point to an unmet need in the treatment of NMIBC and participants' willingness to try a different treatment if recommended. [ABSTRACT FROM AUTHOR]

Background: Serious illness is characterized by high symptom burden that negatively affects quality of life (QOL). Although palliative care research has highlighted symptom burden in seriously ill adults with cancer, symptom burden among those with noncancer serious illness and multiple chronic conditions has been understudied. Latent class analysis is a statistical method that can be used to better understand the relationship between severity of symptom burden and covariates, such as the presence of multiple chronic conditions. Although latent class analysis has been used to highlight subgroups of seriously ill adults with cancer based on symptom clusters, none have incorporated multiple chronic conditions. Objectives: The objectives of this study were to (a) describe the demographic and baseline characteristics of seriously ill adults at the end of life in a palliative care cohort, (b) identify latent subgroups of seriously ill individuals based on severity of symptom burden, and (c) examine variables associated with latent subgroup membership, such as QOL, functional status, and the presence of multiple chronic conditions. Methods : A secondary data analysis of a palliative care clinical trial was conducted. The latent class analysis was based on the Edmonton Symptom Assessment System, which measures nine symptoms on a scale of 0-10 (e.g. pain, fatigue, nausea, depression, anxiousness, drowsiness, appetite, well-being, and shortness of breath). Clinically significant cut-points for symptom severity were used to categorize each symptom item in addition to a categorized total score. Results : Three latent subgroups were identified (e.g. low, moderate, and high symptom burden). Lower overall QOL was associated with membership in the moderate and high symptom burden subgroups. Multiple chronic conditions were associated with statistically significant membership in the high symptom burden latent subgroup. Older adults between 65 and 74 years had a lower likelihood of moderate or high symptom burden subgroup membership compared to the low symptom burden class. Discussion : Lower QOL was associated with high symptom burden. Multiple chronic conditions were associated with high symptom burden, which underlines the clinical complexity of serious illness. Palliative care at the end of life for seriously ill adults with high symptom burden must account for the presence of multiple chronic conditions. [ABSTRACT FROM AUTHOR]

Background: Serious illness is characterized by high symptom burden that negatively affects quality of life (QOL). Although palliative care research has highlighted symptom burden in seriously ill adults with cancer, symptom burden among those with noncancer serious illness and multiple chronic conditions has been understudied. Latent class analysis is a statistical method that can be used to better understand the relationship between severity of symptom burden and covariates, such as the presence of multiple chronic conditions. Although latent class analysis has been used to highlight subgroups of seriously ill adults with cancer based on symptom clusters, none have incorporated multiple chronic conditions. Objectives: The objectives of this study were to (a) describe the demographic and baseline characteristics of seriously ill adults at the end of life in a palliative care cohort, (b) identify latent subgroups of seriously ill individuals based on severity of symptom burden, and (c) examine variables associated with latent subgroup membership, such as QOL, functional status, and the presence of multiple chronic conditions. Methods : A secondary data analysis of a palliative care clinical trial was conducted. The latent class analysis was based on the Edmonton Symptom Assessment System, which measures nine symptoms on a scale of 0-10 (e.g. pain, fatigue, nausea, depression, anxiousness, drowsiness, appetite, well-being, and shortness of breath). Clinically significant cut-points for symptom severity were used to categorize each symptom item in addition to a categorized total score. Results : Three latent subgroups were identified (e.g. low, moderate, and high symptom burden). Lower overall QOL was associated with membership in the moderate and high symptom burden subgroups. Multiple chronic conditions were associated with statistically significant membership in the high symptom burden latent subgroup. Older adults between 65 and 74 years had a lower likelihood of moderate or high symptom burden subgroup membership compared to the low symptom burden class. Discussion : Lower QOL was associated with high symptom burden. Multiple chronic conditions were associated with high symptom burden, which underlines the clinical complexity of serious illness. Palliative care at the end of life for seriously ill adults with high symptom burden must account for the presence of multiple chronic conditions. [ABSTRACT FROM AUTHOR]

Background: Little is known about clinical symptom burden, dementia, and social isolation in the last year of life among older adults. Objective: To describe and contrast the type and severity of symptom burden for older decedents with and without dementia, and whether specific symptoms and presence of dementia are associated with limitations in social participation in the last year of life. Design: Cross-sectional logistic regression analysis of a population-based study. Setting/Subjects: A total of 1270 community-dwelling adults of age ≥65 years in the United States participated in the 2011 National Health and Aging Trends Study and died by 2015. Measurements: Dementia status, 13 clinical symptoms, and limitations in 6 social activities were drawn from the interview preceding death. Severity of sensory, physical, and psychiatric symptom burden was examined in tertiles. Results: Decedents with dementia (37.3%) had higher prevalence of all symptoms (p's < 0.05), except insomnia and breathing problems. Dementia was associated with greater likelihood of high versus low burden of sensory (odds ratio [OR] 4.52 [95% confidence interval {CI} 3.08–6.63]), physical (OR 3.49 [95% CI 2.48–4.91]), and psychiatric (OR 2.80 [95% CI 1.98–3.95]) symptoms. Dementia and physical symptoms (problems with speaking, leg strength/movement, and balance) were independently associated with limitations in at least three social activities (p's < 0.05 for adjusted ORs). Conclusion: Symptom burden is higher in patients with dementia. Dementia and physical symptoms are associated with social activity limitations. Older patients with dementia or physical symptoms may benefit from earlier emphasis on palliative care and quality of life. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To examine the impact of diabetes on the symptoms of women with breast cancer. SAMPLE & SETTING: 121 women with breast cancer who self-identified as having a diabetes diagnosis and 1,006 women with breast cancer without diabetes from 97 sites across the United States. METHODS & VARIABLES: Symptom scores for depression, anxiety, sexual function, peripheral neuropathy, physical function, attention function, sleep disturbance, and fatigue were compared between women with breast cancer and diabetes and women with breast cancer without diabetes, controlling for age, education, income, marital status, and body mass index (BMI). RESULTS: Women with breast cancer and diabetes who were three to eight years postdiagnosis reported poorer physical and attention function, more sleep disturbance, and greater fatigue than women with breast cancer without diabetes. Age, education, income, and BMI were independent predictors of symptoms experienced by women with breast cancer. IMPLICATIONS FOR NURSING: Oncology nurses can assess and monitor women with breast cancer and diabetes for increased post-treatment sequelae. If problematic symptoms are identified, implementing treatment plans can decrease symptom burden and increase quality of life for women with breast cancer and diabetes. [ABSTRACT FROM AUTHOR]

Objectives: To determine the prevalence and impact of common co‐occurring symptoms among community‐dwelling older adults in the United States. Design: The National Health and Aging Trends Study is a nationally representative, prospective study with annual data collection between 2011 and 2017. Setting: Community‐based, in‐person interviews (survey response rates, 71%–96%). Participants: A total of 7,609 community‐dwelling Medicare beneficiaries, 65 years or older. Measurements: Symptoms assessed at baseline include pain, fatigue, breathing difficulty, sleeping difficulty, depressed mood, and anxiety. Total symptom count ranged from zero to six. Several outcomes were examined, including grip strength, gait speed, and overall lower‐extremity function as well as incidence of recurrent falls (two or more per year), hospitalization, disability, nursing home admission, and mortality. Results: Prevalence of zero, one, two, three, and four or more symptoms was 25.0%, 26.6%, 20.7%, 14.0%, and 13.6%, respectively. Symptom count increased with advancing age and was higher in women than in men. Pain and fatigue were the most common co‐occurring symptoms. Higher symptom count was associated with decreased physical capacity. For example, participants with one, two, three, and four or more symptoms had gait speeds that were 0.04, 0.06, 0.09, and 0.13 m/s slower, respectively, than those with no symptoms, adjusting for specific diseases, total number of diseases, and other potential confounders (P <.001). The risk of several adverse outcomes also increased with greater symptom count. For example, compared with those with no symptoms, the adjusted risk ratios for recurrent falls were 1.48 (95% confidence interval [CI] = 1.30–1.70), 1.54 (95% CI = 1.32–1.80), 1.90 (95% CI = 1.55–2.32), and 2.38 (95% CI = 2.00–2.83) for older adults with one, two, three, and four or more symptoms, respectively. Conclusions: Symptoms frequently co‐occur among community‐dwelling older adults and are strongly associated with increased risk of a range of adverse outcomes. Symptoms represent a potential treatment target for improving outcomes and should be systematically captured in health records. J Am Geriatr Soc 67:223–231, 2019. See related Editorial by Hunt et al. in this issue. [ABSTRACT FROM AUTHOR]

Background: Cancer patients' symptom burden is commonly attributed to their cancer and treatment. Increasingly, cancer patients have many other chronic comorbid conditions. However, the degree to which these comorbid conditions may contribute to the patient-reported symptom burden is unclear.Methods: This study explored the relations between the presence of comorbid conditions, the symptom experience and burden, and the perceived bother from cancer or comorbid conditions in 3106 cancer patients. The associations between the number of comorbidities (identified from current medications), the patient-reported symptom burden (the number of symptoms scored as ≥7 on the 13-item MD Anderson Symptom Inventory physical scale), the patient-reported bother from comorbid conditions and from cancer (from "not at all" to "extremely"), and the clinician-reported difficulty in caring for patients' symptoms were examined.Results: According to medication lists, 19% of the patients had at least 5 of 12 comorbid conditions. Approximately 39% rated at least 1 symptom as ≥ 7, and this proportion increased with an increasing number of comorbid conditions (48% with ≥ 5 comorbid conditions vs 36% with 1 comorbid condition). One-third of the patients reported moderate or worse bother, and this was significantly associated with an increased number of comorbid conditions (odds ratio [OR], 2.4) and an increased symptom burden (OR, 1.22). Clinician ratings of difficulty in managing patients' symptoms were significantly associated with bother from cancer (OR, 2.0), comorbid conditions (OR, 1.6), and symptom burden (OR, 1.1).Conclusions: Comorbidity is common in cancer patients and is associated with a greater symptom burden and clinician reports of difficulty in managing patients' symptoms. Greater attention to comorbid conditions is needed to optimize the symptom management of cancer patients with multimorbidity. Cancer 2017;123:3835-3842. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]

Childhood socioeconomic disadvantage may contribute to adult depression. Understanding pathways by which early socioeconomic adversity may shape adult depression is important for identifying areas for intervention. Studies to date have focused on one potential pathway, adult socioeconomic status (SES), and assessed depression at only one or a few time points. Our aims were to examine (a) the association between childhood SES (low vs. high) and depressive symptom burden in midlife and (b) whether adult socioeconomic, psychosocial, and physical health characteristics are important pathways. Using annual data from a cohort of 1109 black and white US women recruited in 1996-1997, we evaluated the association between childhood SES and depressive symptom burden across 15 years in midlife and whether adult characteristics-financial difficulty, lower education, stressful events, low social support, low role functioning, medical conditions, and bodily pain-mediated the association. Depressive symptom burden was estimated by calculating area under the curve of annual scores across 15 years of the Center for Epidemiological Studies Depression (CES-D). In unadjusted models, low childhood SES was associated with greater depressive burden ( P = 0.0002). Each hypothesized mediator, individually, did not reduce the association. However, when five of the hypothesized mediators were included together in the same analysis, they explained more than two thirds of the association between childhood SES and depressive symptom burden reducing the P value for childhood SES to non-significance ( P = 0.20). These results suggest that childhood SES influences midlife depressive symptom burden through a cluster of economic stress, limited social resources, and physical symptoms in adulthood. [ABSTRACT FROM AUTHOR]

Background: Improved survival for individuals with metastatic cancer accentuates the importance of employment for cancer survivors. A better understanding of how metastatic cancer affects employment is a necessary step toward the development of tools for assisting survivors in this important realm.Methods: The ECOG-ACRIN Symptom Outcomes and Practice Patterns study was analyzed to investigate what factors were associated with the employment of 680 metastatic cancer patients. Univariate and multivariate logistic regression analyses were conducted to compare patients stably working with patients no longer working.Results: There were 668 metastatic working-age participants in the analysis: 236 (35%) worked full- or part-time, whereas 302 (45%) had stopped working because of illness. Overall, 58% reported some change in employment due to illness. A better performance status and non-Hispanic white ethnicity/race were significantly associated with continuing to work despite a metastatic cancer diagnosis in the multivariate analysis. The disease type, time since metastatic diagnosis, number of metastatic sites, location of metastatic disease, and treatment status had no significant impact. Among the potentially modifiable factors, receiving hormonal treatment (if a viable option) and decreasing symptom interference were associated with continuing to work.Conclusions: A significant percentage of the metastatic patients remained employed; increased symptom burden was associated with a change to no longer working. Modifiable factors resulting in work interference should be minimized so that patients with metastatic disease may continue working if this is desired. Improvements in symptom control and strategies developed to help address workplace difficulties have promise for improving this aspect of survivorship. [ABSTRACT FROM AUTHOR]

Background: Rectal cancer is a common cancer . Curative treatment frequently includes surgery, radiation, and chemotherapy, all of which can result in long-term adverse effects. Objectives: This descriptive, hypothesis-generating study sought to obtain input from survivors of rectal cancer regarding key features of their long-term experience. Methods: The authors administered a 12-question, Internet-based survey to self-identified rectal cancer survivors to assess (a) how neuropathy, fatigue, trouble with ostomy or bowel movements, and trouble with sexual function affect daily life and (b) whether knowing about these symptoms a priori would have changed their treatment decisions. Responses are presented descriptively. Qualitative analysis assessed themes reported in response to an open-ended question. Findings: Responses from 116 survivors of rectal cancer, 55 of whom provided open-ended responses, were obtained. Respondents were predominantly young and several years from treatment. They reported that their lives were affected "a lot" by bowel or ostomy trouble, trouble with sexual function, fatigue, and nerve toxicity. Survivors reported that knowing whether symptoms would affect their lives "a lot" would have changed their treatment decisions with a priori knowledge of these lasting effects. Key qualitative themes were the lack of information about and support for negative effects. [ABSTRACT FROM AUTHOR]

Purpose: Disease symptom management in patients with advanced non-small cell lung cancer (NSCLC) is a critical aspect of therapy. The main objective of our study was to assess patient-reported outcomes and the degree of concordance between physician and patient perceptions of symptom severity in advanced NSCLC in the USA. Methods: Patients with advanced (stage IIIB/IV) NSCLC ( N = 450) were recruited in a nationwide (USA) lung cancer study. Patients and their oncologists completed patient and physician versions of the Lung Cancer Symptom Scale (LCSS). Patient-reported lung cancer-specific quality of life was assessed with the Functional Assessment of Cancer Therapy—Lung (FACT-L). Concordance was assessed using the kappa-statistic. Regression analysis was performed with FACT-L total score as the dependent variable and patient-reported LCSS symptom scores as predictors. Results: A high proportion of patients experienced lung cancer symptoms: fatigue (100 %), loss of appetite (97 %), shortness of breath (95 %), cough (93 %), pain (92 %), and blood in sputum (63 %). Concordance between physician and patients was lowest for loss of appetite (kappa 0.1701) and greatest for hemoptysis (kappa 0.4586). Loss of appetite ( β = −0.204; p < 0.001), cough ( β = −0.145; p < 0.01), pain ( β = −0.265; p < 0.001), and shortness of breath ( β = −0.145; p < 0.01) were found to be significant predictors of the quality of life. Conclusions: Symptom burden in patients with advanced NSCLC is high and has a negative impact on the quality of life. Patient-reported outcomes data could help optimize disease outcomes and therapy management in NSCLC. [ABSTRACT FROM AUTHOR]

BACKGROUND: The growing diversity of the population of the United States and the high burden of cancer-related symptoms reflect the need for caregiver research within underserved groups. In this longitudinal study, the authors assessed changes in symptom severity in caregivers and underserved minority patients diagnosed with advanced solid tumors who were being treated at public hospitals. METHODS: A total of 85 matched patient-caregiver dyads completed the M. D. Anderson Symptom Inventory 3 times during 20 weeks of chemotherapy. At each time point, symptom severity and interference with daily activities were assessed. Group-based trajectory modeling was used to classify caregivers into high-symptom or low-symptom burden groups. RESULTS: Sadness and distress were more prevalent among caregivers (P = .005). Symptom burden remained stable among caregivers in the high-symptom group (40%), whereas the low-symptom group (60%) demonstrated a statistically significant decrease over time. Multivariate analysis found being a family-member caregiver (adjusted odds ratio [ADJ-OR], 4.1; 95% confidence interval [95% CI], 1.4-11.6) and caring for a highly symptomatic patient (ADJ-OR, 8.0; 95% CI, 1.5-41.4), rather than race, ethnicity, or sociodemographic characteristics, were significant predictors of the caregiver's membership in the high-symptom burden group. CONCLUSIONS: Approximately 40% of the caregivers in the current study were found to be at an increased risk for moderate to severe sadness and distress, which remained severe throughout the patient's treatment course at public hospitals. To the authors' knowledge, this study marks the first time that the concept of symptom burden has been used to measure caregiver burden, and the first time that symptom burden has been measured and documented in dyads of caregivers and underserved minority patients. [ABSTRACT FROM AUTHOR]