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Symptom Burden and Palliative Referral Disparities in an Ambulatory South Texas Cancer Center.

ABSTRACT: Background: The American Society of Clinical Oncology's recommendation for "dedicated palliative care services, early in the disease course, concurrent with active treatment" for cancer patients is a challenge for cancer centers to accommodate. Despite demonstrated benefits of concurrent care, disparities among socioeconomic and ethnic groups in access to supportive care services have been described. The aim of this project was to evaluate: (a) how insurance coverage and ethnicity impact patient symptom burden and, (b) how those factors influence palliative access for patients at a South Texas NCI-designated cancer center. Methods: During a 5-month prospective period, 604 patients from five ambulatory oncology clinics completed the 10 question Edmonton Symptom Assessment Scale (ESAS) surveys during their clinic visit. Patient demographics, ESAS scores, palliative referral decisions, and time to palliative encounters were collected. We compared symptom burden and time to consult based on ethnicity and insurance status (insured = Group A; under-insured and safety net = Group B). Results: The mean ESAS score for all patients at the initial visit was 19.9 (SD = 18.1). Safety net patients were significantly more likely to be Hispanic, younger in age, and have an underlying GI malignancy in comparison to insured patients; however, the symptom severity was similar between groups with over 40% of individuals reporting at least one severe symptom. Twenty-one referrals were made to palliative care. On average, Group B had 33.3 days longer wait times until their first potential visit (p < 0.01) when compared to Group A. Time to actual visit was on average 57.6 days longer for patients in Group B compared to patients in Group A (p = 0.01), averaging at 73.8 days for safety net patients. Conclusions: This project highlights the high symptom burden of oncology patients and disparities in access to services based on insurance coverage. This investigation revealed a 4-fold increase in the time to the first scheduled palliative care visit based on whether patients were insured vs. under-insured. While this study is limited by a small sample size, data suggest that under-insured oncology patients may have significant barriers to palliative care services, which may influence their cancer care quality.

SUBMITTER: Cervantez SR

PROVIDER: S-EPMC6196262 | biostudies-literature | 2018

REPOSITORIES: biostudies-literature

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Symptom Burden and Palliative Referral Disparities in an Ambulatory South Texas Cancer Center.

Cervantez Sherri Rauenzahn SR Tenner Laura L LL Schmidt Susanne S Aduba Ifeoma O IO Jones Jessica T JT Ali Nazneen N Singh-Carlson Savitri S

Frontiers in oncology 20181015

<b>Background:</b> The American Society of Clinical Oncology's recommendation for "dedicated palliative care services, early in the disease course, concurrent with active treatment" for cancer patients is a challenge for cancer centers to accommodate. Despite demonstrated benefits of concurrent care, disparities among socioeconomic and ethnic groups in access to supportive care services have been described. The aim of this project was to evaluate: (a) how insurance coverage and ethnicity impact ...[more]

PMID: 30374422

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Project description:BackgroundAlthough current guidelines advocate early integration of palliative care, symptom burden and palliative care needs of patients at diagnosis of incurable cancer and along the disease trajectory are understudied.Material and methodsWe assessed distress, symptom burden, quality of life, and supportive care needs in patients with newly diagnosed incurable cancer in a prospective longitudinal observational multicenter study. Patients were evaluated using validated self-report measures (National Comprehensive Cancer Network Distress Thermometer [DT], Functional Assessment of Cancer Therapy [FACT], Schedule for the Evaluation of Individual Quality of Life [SEIQoL-Q], Patients Health Questionnaire-4 [PHQ-4], modified Supportive Care Needs Survey [SCNS-SF-34]) at baseline (T0) and at 3 (T1), 6 (T2), and 12 months (T3) follow-up.ResultsFrom October 2014 to October 2016, 500 patients (219 women, 281 men; mean age 64.2 years) were recruited at 20 study sites in Germany following diagnosis of incurable metastatic, locally advanced, or recurrent lung (217), gastrointestinal (156), head and neck (55), gynecological (57), and skin (15) cancer. Patients reported significant distress (DT score ≥ 5) after diagnosis, which significantly decreased over time (T0: 67.2%, T1: 51.7%, T2: 47.9%, T3: 48.7%). The spectrum of reported symptoms was broad, with considerable variety between and within the cancer groups. Anxiety and depressiveness were most prevalent early in the disease course (T0: 30.8%, T1: 20.1%, T2: 14.7%, T3: 16.9%). The number of patients reporting unmet supportive care needs decreased over time (T0: 71.8 %, T1: 61.6%, T2: 58.1%, T3: 55.3%).ConclusionOur study confirms a variable and mostly high symptom burden at the time of diagnosis of incurable cancer, suggesting early screening by using standardized tools and underlining the usefulness of early palliative care.Implications for practiceA better understanding of symptom burden and palliative care needs of patients with newly diagnosed incurable cancer may guide clinical practice and help to improve the quality of palliative care services. The results of this study provide important information for establishing palliative care programs and related guidelines. Distress, symptom burden, and the need for support vary and are often high at the time of diagnosis. These findings underscore the need for implementation of symptom screening as well as early palliative care services, starting at the time of diagnosis of incurable cancer and tailored according to patients' needs.

Project description:BackgroundBlack Americans have a higher incidence and mortality rate from colorectal cancer compared to their non-Hispanic White American counterparts. Even when controlling for sociodemographic differences between these 2 populations, Black Americans remain disproportionately affected by colorectal cancer. The purpose of our study was to determine if differences in gene expression between Black American and non-Hispanic White American colon cancer specimens could help explain differences in the incidence and mortality rate between these 2 populations.MethodsBlack Americans and non-Hispanic White Americans undergoing colon resection for stages I, II, or III colon cancer at a single institution were identified. Black American and non-Hispanic White American patients were matched for age, sex, and colon cancer stage to minimize the risk of confounding variables. Tissue samples were obtained at the time of colon resection and were analyzed using RNA sequencing to determine if there were differences in the expression of genes and biologic processes between the 2 groups.ResultsA total of 17 colon cancer specimens were analyzed; 8 (47.1%) patients were Black Americans. A total of 456 genes were identified as being expressed differently (ie, up or downregulated) in Black American compared to non-Hispanic White American colon cancer specimens. Moreover, 500 different genetic pathways were noted to be significantly over-represented with differentially expressed genes in our comparison of Black American and non-Hispanic White American colon cancer specimens, the majority of which plays a role in inflammation and immune cell function.ConclusionSignificant differences in gene expression and genetic pathways exist between Black Americans and non-Hispanic White Americans. Additional and multi-institutional and registry-based studies are needed to validate our findings and to further elucidate the contribution that these differences have to the overall incidence and mortality rate from colon cancer in these 2 patient populations.

Project description:BACKGROUND:The implementation of standardised, valid and reliable measurements in palliative care is subject to practical and methodological challenges. One aspect of ongoing discussion is the value of systematic proxy-based assessment of symptom burden in palliative care. In 2011, an expert-developed proxy-based instrument for the assessment of symptom burden in palliative patients, the Palliative Symptom Burden Score (PSBS), was implemented at the Specialised Palliative Care Unit of the University Medical Centre in Dusseldorf, Germany. The present study investigated its feasibility, acceptance and psychometric properties. METHODS:The PSBS was rated by nursing staff three times a day over 5 years (N?=?820 patients). Feasibility and nurses' acceptance of PSBS were analysed. Structural validity was investigated by principal component analysis. Construct validity was examined via cross-validation with the Hospice and Palliative Care Evaluation checklist. Discriminative validity of the PSBS was analysed by means of Kruskal-Wallis test of patients' performance score. Reliability of the PSBS was evaluated by internal consistency analysis, test-retest and split-half-reliability. Inter-rater reliability was investigated by observer agreement of nurses' ratings of symptom burden within a day. Sensitivity to change was analysed by Wilcoxon test with repeated measures of the PSBS before and after palliative complex treatment. RESULTS:A high degree of acceptance and the feasibility of a high-frequency proxy-based symptom burden assessment approach were demonstrated. There were low rates of missing values and no indications of the adoption of prior ratings. PSBS in its present form demonstrates good structural and construct validity (rs?=?.27-.79, p's?<?.001) and high sensitivity to changes in symptom burden (p's?<?.01, except sweating), but unsatisfactory reliability (??=?.41-.67; test-retest: rs = .30-.88; p's?<?.001; split-half: rs?=?.69; p?<?.001; inter-rater: n.s.). CONCLUSIONS:The study presents a framework for the post hoc validation of an already existing documentation tool in palliative care. This study supports the notion that PSBS might not be reflective of an overall construct and will therefore require further development and critical comparison to other already established symptom burden instruments in palliative care.

Project description:BACKGROUND:People with advanced cancer experience multiple symptoms during their illness trajectory, which can fluctuate in intensity. AIM:To describe the course of self-reported quality of life, emotional functioning, physical functioning and symptom intensity over time in cancer patients receiving palliative care. DESIGN:Longitudinal study with monthly assessments, using the EORTC QLQ-C15-PAL. Data were analysed (1) prospectively, from baseline to ?8-month follow-up; and (2) retrospectively, by taking death as index date and comparing results from three cross-sectional subsamples at different stages of illness (time to death ?6, 5-3 and 2-0 months). Linear mixed models were calculated. SETTING/PARTICIPANTS:A total of 1739 patients (mean age 66, 50% male) from 30 palliative care centers in 12 countries were included. RESULTS:In prospective analyses, quality of life, functioning and symptoms-except nausea/vomiting-remained generally stable over time. In retrospective analyses, patients 2-0 months before death reported significantly lower quality of life and physical functioning scores than those 5-3 months before death, who in turn scored lower than those ?6 months before death, suggesting progressive decline. Emotional functioning remained initially unchanged, but decreased in the last months. Pain, fatigue and appetite loss showed a stable increase in intensity towards death. Dyspnea, insomnia and constipation increased from 5-3 to 2-0 months before death. Nausea/vomiting only increased when comparing those ?6 months before death with those 2-0 months before death. CONCLUSION:While the prospective approach showed predominantly stable patterns for quality of life, functioning and symptom severity throughout study duration, retrospective analyses indicated that deterioration was already apparent before the terminal phase and accelerated close to death. Our findings support the importance of early symptom identification and treatment in this population, and highlight the need for further studies to explore what characterizes those with either lower or higher symptom burden at different time points towards death.

Dataset Information

Symptom Burden and Palliative Referral Disparities in an Ambulatory South Texas Cancer Center.

Publications

Symptom Burden and Palliative Referral Disparities in an Ambulatory South Texas Cancer Center.

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