scholarly journals Patient-Reported Symptoms in the Hematologic Malignancies

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 5990-5990
Author(s):  
Pamela Ann Crilley ◽  
Daniela Albu ◽  
Diane Denny ◽  
David Topolsky ◽  
Brandon Bosch ◽  
...  

Abstract BACKGROUND : In patients with hematologic malignancies symptoms related to the disease and its treatment remain a major problem in patient care. With the advent of new treatment including immunotherapy and targeted therapies the potential for prolonged life and additional treatment is increasing. Patient self-reported symptom burden during periods of observation and treatment are infrequently reported but highly relevant to patient care. Assessment of patient-reported outcomes may allow for improvement in the management of symptoms and communication with providers. The Symptom Inventory Tool (SIT) is an assessment tool that captures patient's perceived symptom burden for real-time clinical intervention, taken at baseline and every 21 days or greater. It is comprised of 19 questions from the validated M.D. Anderson SIT (MDASI) (Cleeland CS, Cancer 2013.) and 8 additional questions added by CTCA for additional evaluation of patient symptoms. PATIENTS & METHODS: Patients reported symptoms intensity using the SIT: 19-item MDASI and 8 additional questions added by CTCA (constipation, swelling, mouth soreness, bleeding, sexual interest, family, hope & overall QOL). Symptoms were rated "at the worst" on an 11-point numeric scale ranging from 0 ('none present") to 10 ("as bad as you can imagine") in the previous 24 hours. SIT became an integral part of patient care at CTCA beginning in 2012. RESULTS: From 2012 to 2016, a total of 230 patients diagnosed with hematologic malignancies were evaluated at CTCA-ERMC. 108 patients that had two or more SIT data points were selected for analysis. A total of 830 assessments were analyzed. The assessments consisted of 108 completed at baseline, 107 completed at the 2nd follow-up, and 613 at 3rd follow-up or greater. Median age was 51 years (range, 18-78). Race: white (65%) black (32%) and other (2%). The average time since diagnosis was 41 months, and 32% of the patients had received prior systemic therapy. Table 1 shows the 5 most reported symptoms of entire sample with approximately 30% reported improvement from the baseline to the second assessment. Table 2 shows a subset of 35 patients that reported severe scores of > 8 for five symptoms that had clinically significant improvement from baseline to 2nd assessment. CONCLUSIONS: The SIT was successful in identifying symptom burden and interference with life issues in patients with hematologic malignancies. Early identification of patient symptom burden may allow for faster intervention and improvement in patient outcomes. Disclosures No relevant conflicts of interest to declare.

2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 79-79
Author(s):  
Diane Denny ◽  
Swetha B. Nutakki ◽  
Kayla Alston ◽  
Maurie Markman

79 Background: Cancer Treatment Centers of America, Inc (CTCA) is a national network of five hospitals that specialize in the treatment of patients fighting complex or advanced-stage cancer. The Symptom Inventory Tool (SIT) is an assessment tool that captures the patients’ perceived symptom burden. It includes the scientifically validated M. D. Anderson Symptom Inventory core items and is supplemented by CTCA clinician interested ‘custom 8’ (constipation, swelling, mouth soreness, bleeding, sexual interest, family, hope and Quality of Life). Methods: A baseline assessment is administered to new patients. Follow ups are assessed every 21 days or greater. The patients’ answers range from 0 to 10 and a score of 8 or higher was considered a severe symptom. A change of 2 points from baseline to 2nd follow up assessment is considered a clinically significant. Patients who had a severe pain score on a baseline assessment between April 2013 and March 2014 were closely followed. Results: There were 6,836 baseline assessments and 2,961 2nd follow up assessments between April 2013 and March 2014. Fatigue and sleep were the most reported symptoms while bleeding, mouth sores and vomiting were the least reported. Most of the patients had a decrease or stayed unchanged in their symptom scores. The patients who had a significant increase in symptoms at follow up ranged from 6% for bleeding to 28% for fatigue. There were 462 patients who reported severe pain on baseline assessment. Of the 462 patients, 295 patients (63.8%) had improvement in severity by the follow up assessment. After chart review, 447 patients (96.7%) had either improvement by follow up assessment (63.8%) or documented pain intervention (32.9%). Interventions included change to pain medication, addition of a Medtronic pain pump, physical therapy, palliative radiation therapy, cold laser therapy, and integrative therapies such as acupuncture, chiropractic care and massage therapy Conclusions: The SIT was successful in identifying symptom burden and interference with life issues in oncology patients. It has become an integral part of patient care at CTCA in providing exceptional pain and symptom management through the disease process creating visibility and focus.


BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038223
Author(s):  
Lili Tang ◽  
Ying Pang ◽  
Yi He ◽  
Qiuling Shi ◽  
Xinkun Han ◽  
...  

IntroductionAn electronic Patient-Reported Outcome (ePRO) platform is needed for implementing evidence-based symptom management in outpatients with advanced cancer. We describe the overall protocol and the methodology for measuring symptom burden, to provide critical parameters needed to implement symptom management on the ePRO platform.Methods and analysisThe study focusses on patients with advanced lung cancer, stomach cancer, oesophagus cancer, liver cancer, colorectal cancer or breast cancer. The primary outcome is the change of symptom burden. MD Anderson Symptom Inventory, and other PRO instruments (Insomnia Severity Index, Hospital Anxiety and Depression Scale, 9-item Patient Health Questionnaire and EuroQol-5 dimensions-5 levels version) were used. The secondary outcomes include feasibility of using ePRO, symptom-related quality of life, reasons for no improvement of symptoms, defining frequency of PRO assessments and cut-points, items for screening and management of comorbidity and satisfaction with ePRO platform in patients and health providers. After initial outpatient visit for baseline assessment, ePRO system will automatically send follow-up notification seven times over 4 weeks to patients. The characteristics and changing trajectory of symptoms of patients will be described. Parameters for using PROs, such as optimal time points for follow-up and cut-off point for alert will be determined. The feasibility of ePRO platform to track the changes of target symptoms in outpatients will be evaluated.Ethics and disseminationThe study protocol and related documents were approved by the Institutional Research Board (IRB) of Peking University Cancer Hospital on 13 February 2019 (2019YJZ07). The results of this study will be disseminated through academic workshops, peer-reviewed publications and conferences.Trial registration numberChiCTR1900023560.


2019 ◽  
Author(s):  
Garden Lee ◽  
Han Sang Kim ◽  
Si Won Lee ◽  
Eun Hwa Kim ◽  
Bori Lee ◽  
...  

Abstract Background: Although early palliative care is associated with a better quality of life and improved outcomes in end-of-life cancer care, the criteria of palliative care referral are still elusive. Methods: We collected patient-reported symptoms using the Edmonton Symptom Assessment System (ESAS) at the baseline, first, and second follow-up visit. The ESAS evaluates ten symptoms: pain, fatigue, nausea, depression, anxiety, drowsiness, dyspnea, sleep disorder, appetite, and wellbeing. A total of 71 patients were evaluable, with a median age of 65 years, male (62%), and the Eastern Cooperative Oncology Group (ECOG) performance status distribution of 1/2/3 (28%/39%/33%), respectively. Results: Twenty (28%) patients had moderate/severe symptom burden with the mean ESAS ≥5. Interestingly, most of the patients with moderate/severe symptom burdens (ESAS ≥5) had globally elevated symptom expression. While the mean ESAS score was maintained in patients with mild symptom burden (ESAS<5; 2.7 at the baseline; 3.4 at the first follow-up; 3.0 at the second follow-up; P =0.117), there was significant symptom improvement in patients with moderate/severe symptom burden (ESAS≥5; 6.5 at the baseline; 4.5 at the first follow-up; 3.6 at the second follow-up; P <0.001). Conclusions: Advanced cancer patients with ESAS ≥5 may benefit from outpatient palliative cancer care. Prescreening of patient-reported symptoms using ESAS can be useful for identifying unmet palliative care needs in advanced cancer patients.


Author(s):  
Michael E Nassif ◽  
David J Cohen ◽  
Suzanne V Arnold ◽  
Mohammed Qintar ◽  
Michael E Farkouh ◽  
...  

Background: The Canadian Cardiovascular Society (CCS) classification system for angina is a critical determinant of revascularization appropriateness. A major limitation of CCS is that it rates patients’ symptoms from the perspective of providers, rather than patients themselves. Accordingly, we sought to evaluate the correlation of physician-assigned CCS class with patient-reported Seattle Angina Questionnaire (SAQ), before and after revascularization. Methods: Using data from the FREEDOM trial, which randomized 1900 patients from over 160 international sites to either PCI or CABG, CCS was reported by physicians and the SAQ was completed by patients prior to randomization and 1 year later. SAQ angina frequency (SAQ AF) scores were considered to correspond to CCS class per the following: SAF AF: 100=CCS 0, 61-99=CCS I, 31-60=CCS II, 0-30=CCS III/IV. Agreement between physician- and patient-reported angina categories was compared using chi square tests. Results: Among 1640 patients who had CCS and SAQ data at both baseline and 1-year, the mean age was 63.1 years, 71% were male, and 83% had 3-vessel coronary disease. Before revascularization, physicians correctly reported the burden of angina in 25.5% of patients and overestimated the burden of angina in 62.1%. Among 1194 patients who reported monthly or no angina, 229 (19.2%) were classified by their physicians as having CCS III/IV. In contrast, at follow-up, 71.2% of patients had their angina correctly estimated by their physicians and only 0.6% among the 1568 patients with monthly/no angina were assigned CCS III/IV by their physicians. Among the 28.8% misclassified by CCS at 1 year, 20.8% had less angina than reported by physicians and 8.0% had more (Figure; p=0.01). Findings were similar when the analysis was repeated in patients who were treated with PCI or CABG. Conclusions: In a large cohort of patients with stable coronary disease undergoing revascularization, clinicians often overestimated the amount of angina patients were having prior to revascularization but were significantly more accurate at follow-up. Given that importance placed on CCS for enrollment in clinical trials, or assigning appropriateness of revascularization in clinical practice, using patient-reported symptom burden as a more unbiased measure should be considered.


Blood ◽  
2014 ◽  
Vol 124 (21) ◽  
pp. 2647-2647
Author(s):  
Alessandra Malato ◽  
Francesco Acquaviva ◽  
Rosaria Felice ◽  
Silvana Magrin ◽  
Maria Grazia Donà ◽  
...  

Abstract Background and Aim: The emergence and dissemination of Carbapenemase producing Klebsiella pneumoniae (KPC) represent a serious threat to public health and is associated with high mortality rates in patients with hematologic malignancies. Several risk factors (prior exposure to or current use of antibiotics, extended stay in hospital, neutropenia, sharing a room with a know carrier etc) have been identified for colonization in hematological patients. However, data on how to contain their spread in haematological setting are still surprisingly limited. We carried out a prospective investigation to assess the prevalence of KPC colonization among hematologic patients, the impact of a strategy control to limit the spread and to evaluate the efficacy of an implementation of more extensive active surveillance. Methods: Infections caused by multiresistant pathogens have been recorded in our Unit from January 2012 through June 2014. From January 2012 to July 2013, we developed an intensive control infection program, (Plan A): 1. Weekly colonization screening for KPC; 2. Educate healthcare personnel about KPC; 3. Promotion of hand hygiene 4. Physical separation of carriers from non-carriers 5. A double-carbapenem plus colistin therapeutic empiric regimen was given for blood stream infections. Since July 2013, we decided to implement additional measures, including (Plan B): 1. Drastic reduction in the number of beds. 2. 2% chlorhexidine body washing for colonized patients. 3. Ensure access to adequate hand hygiene stations (i.e., clean sinks and/or alcohol) and ensure they are well stocked with supplies (e.g. towels, soap, etc.) 4. Donning gown and gloves before entering the affected patient’s room and removing the gown and gloves and performing hand hygiene prior to exiting the affected patient’s room. Results: Since January 2012 perianal swabs were detected weekly from 607 consecutive patients affected by hematologic malignancies, for a total of 1079 admissions and 12.284 days of hospital stay.KPC colonization was present in 47 out of 607 (7.7%) screened patients at some time during their (often multiple hospitalizations); 11 bloodstream infections were reported in 9 patients (23%). Three deaths (3/11, 27%) due to KPC were reported before implementation screening (overall mortality rate was 6.3 % of colonized patients). KPC-decolonisation was achieved in 13/47 pts (28 %) after a median duration of 88 days (range 20-118).Most patients who recovered from KPC infection or were just colonized by KPC went on to receive additional chemotherapy without any life threatening KPC infection occurring (only one patient reported two septic episodes). Since screening cultures or further clinical cultures identified a progressive increase KPCcolonized or -infected patients, we decided to implement additional measures (Plan B). Therefore, from fourth trimester 2013 of study, we have observed a progressive decrease in rate of new colonization: 2 patients (4.17%) vs 15 patients (30%) in the third trimester, and a very low rate was maintained until the second trimester of 2014( 3 patients -4%). Conclusions: The prevalence of KPC colonization in our hospital is high among patients with hematologic diseases.An implementation of additional measures, sharing the patients in single bed-rooms and consequently limiting transfer of cases from other wards, was able to contain KPC colonization and infection.However, the success of our preliminary interventions should be monitored constantly; besides, to prevent the emergence and further spread of CRE, a coordinated regional control effort among healthcare facilities should be recommended. Figure 1 Figure 1. Disclosures No relevant conflicts of interest to declare.


2017 ◽  
Vol 8 (3) ◽  
Author(s):  
Suderlan Sabino Leandro ◽  
Pedro Sadi Monteiro

Objetivo: avaliar o atributo da “Coordenação da Atenção” sob a perspectiva dos profissionais de saúde. Metodologia: estudo descritivo transversal realizado com 82 profissionais da “Estratégia Saúde da Família” de uma Região Administrativa do Distrito Federal e foi utilizado como instrumento o Primary Care Assessment Tool . Resultados: os profissionais avaliam a coordenação da atenção positivamente, porém, apontam fragilidades em relação aos serviços de referência que não disponibilizam informações úteis sobre o paciente encaminhado. Conclusão: esta pesquisa sugere que a continuidade da assistência ao paciente torna-se comprometida em decorrência da quebra na integração dos serviços, sendo necessário buscar formas de melhorar a comunicação entre os diversos níveis de atenção.Descritores: Avaliação em Saúde, Continuidade da Assistência ao Paciente, Estratégia Saúde da Família.ASSESSMENT OF THE CARE COORDINATION FROM THE PERSPECTIVE OF HEALTH PROFESSIONALSObjective: To assess the features of care coordination from the perspective of health professionals. Methodology: A cross-sectional descriptive study carried out with 82 professionals of the Family Health Strategy of an administrative region of the Federal District, and the Primary Care Assessment Tool was used as the instrument. Results: Professionals evaluate the coordination of care positively but point out weaknesses in relation to referral services that do not provide useful information about the referred patient. Conclusion: This research suggests that the continuity of patient care is compromised due to the breakdown in the integration of services and it is necessary to seek ways to improve communication between the different levels of care.Descriptors: Health Assessment, Continuity of Patient Care, Family Health Strategy.EVALUACIÓN DE LA COORDINACIÓN DE LA ATENCIÓN EN LA PERSPECTIVA DE LOS PROFESIONALES DE SALUDObjetivo: Evaluar el atributo de la “Coordinación de la Atención” bajo la perspectiva de los profesionales de la salud. Metodología: Estudio descriptivo transversal realizado con 82 profesionales de la “Estrategia Salud de la Familia” de una región administrativa del Distrito Federal y fue utilizado como un instrumento de la Herramienta de Evaluación de la Atención Primaria. Resultados: Los profesionales evaluaran la coordinación de la atención positivamente, pero apuntan fragilidades en relación a los servicios de referencia que no ofrecen informaciones útiles sobre el paciente remitido. Conclusión: esta investigación sugiere que la continuidad de la asistencia al paciente se ve comprometida debido a la ruptura en la integración de los servicios, siendo necesario buscar formas de mejorar la comunicación entre los diversos niveles de la atención primaria.Descriptores: Evaluación en Salud, Continuidad de la Asistencia al Paciente, Estrategia Salud de la Familia.


2019 ◽  
Vol 09 (01) ◽  
pp. 058-062 ◽  
Author(s):  
Caroline A. Selles ◽  
Philip N. d'Ailly ◽  
Niels W.L. Schep

Abstract Background Triangular fibrocartilage complex (TFCC) injury is a common cause of ulnar-sided wrist pain, which may lead to serious physical impairments. Arthroscopic repair has benefits such as less soft tissue damage, greater surgical accuracy, and may lead to faster recovery than open repair. Objective The purpose of this study was to determine the functional outcome of patients with symptomatic TFCC injuries treated with arthroscopic debridement or repair. Patients and Methods A retrospective study of all consecutive patients with a TFCC injury treated arthroscopically was conducted. The primary outcome was the patient-rated wrist evaluation (PRWE) score. Secondary outcomes were, pain, operative findings, complications, and additional treatment. Results A total of 51 patients with a median follow-up of 16.5 months (interquartile range [IQR]: 13–25) were included. Injuries were treated with TFCC debridement (n = 25), TFCC ligament to capsule suturing (n = 10), TFCC debridement and ligament to capsule suturing (n = 7), TFCC debridement and synovectomy (n = 5), and TFCC foveal reinsertion with a suture anchor (n = 4). The median PRWE was 19.5 (IQR: 6–49). Complications occurred in three patients and in nine patients additional surgery was performed. Conclusion Arthroscopic treatment of TFCC lesions leads to satisfactory functional outcomes. Level of Evidence This is a Level IV study.


2017 ◽  
Vol 13 (4) ◽  
pp. e395-e400 ◽  
Author(s):  
Emily Mackler ◽  
Laura Petersen ◽  
Jane Severson ◽  
Douglas W. Blayney ◽  
Lydia L. Benitez ◽  
...  

Introduction: The paradigm shift in health care toward value-based reimbursement has brought emphasis to providing better quality of care to patients with chronic diseases, including patients with cancer. In accordance with providing better quality of care to patients, there has been a growing interest in evaluating quality of life through patient-reported outcomes (PROs). The revised Edmonton Symptom Assessment Scale (ESAS-r) is a tool that can be used to assess PROs and has been validated for use in patients with cancer. This initiative sought to use this standard assessment tool to acquire PROs concerning symptom burden from patients prescribed oral oncolytics. Patients and Methods: Eight oncology practices in the state of Michigan used a modified ESAS-r to evaluate symptom burden of patients prescribed oral oncolytics before each outpatient visit. Thirteen symptoms were categorized as mild (0 to 3), moderate (4 to 6), or severe (7 to 10). Results: A total of 1,235 modified ESAS-r surveys were collected and analyzed; 82.5% of symptoms were categorized as mild, 11.9% of symptoms were categorized as moderate, and 5.6% of symptoms were categorized as severe. Conclusion: PROs can be evaluated through the use of a standardized tool, such as the ESAS-r, in oncology patients receiving oral oncolytic therapy. Implementing such a tool in both community and academic practices is feasible and may facilitate improvements in the quality of care.


2012 ◽  
Vol 30 (27_suppl) ◽  
pp. 111-111 ◽  
Author(s):  
Peter Andrew Kaufman ◽  
Musa Mayer ◽  
Nancy A. Dreyer ◽  
Yeun Mi Yim ◽  
Elaine Yu ◽  
...  

111 Background: Limited data exist on patient (pt) experience and work productivity (WP) in MBC. VIRGO is a prospective OCS following >1,200 pts with locally advanced or MBC receiving 1st-line hormonal therapy (HT) or chemotherapy (CT) in a real-world setting. We report baseline characteristics of 277 pts from the VIRGO PRO substudy and correlations between health-related quality of life (HRQoL), symptoms, activities of daily living, and WP. Methods: Symptom severity and interference (M.D. Anderson Symptom Inventory [MDASI]), functional status (Activity Level Scale [ALS] from the Rotterdam Symptom Checklist) and WP (Work Productivity and Activity Impairment Questionnaire) were assessed. Pts rated their HRQoL during the past week on a scale of 0–10. Results: See table. The five most severe symptoms at baseline were fatigue, decreased sexual interest, disturbed sleep, drowsiness, and emotional distress; these were reported with less severity in the HT cohort (24%-37% vs 42%-59%). Overall MDASI severity and interference correlated with WP measures in the CT (R=0.46 to 0.78) and HT cohorts (0.36 to 0.94). Mean of the 5 most severe symptoms also significantly correlated with WP indices (R=0.47 to 0.66). HRQoL correlated (p<0.05) with all WP measures (R=-0.46 to -0.56) in the CT cohort and with % impairment while working (R=-0.65) and % overall work impairment (R=-0.71) in the HT cohort. In univariate regression analysis, MDASI symptom interference score was the best predictor of reduced WP (R2=0.52 while working; R2=0.48 for non-work activities). Conclusions: MBC pts receiving CT and HT report significant work impairment. Results indicate moderate correlations between WP indices, HRQoL and symptom burden. [Table: see text]


2013 ◽  
Vol 31 (15_suppl) ◽  
pp. e20669-e20669
Author(s):  
Christine Bettine Boers-Doets ◽  
Hans Gelderblom ◽  
Joel Brian Epstein ◽  
Mario E. Lacouture ◽  
Ad A Kaptein

e20669 Background: Mucocutaneous adverse events (mcAEs), including papulopustular rash, xerosis, pruritus, paronychia, hand-foot skin reaction, edema, taste alterations, oral pain and ulceration, hair-, periungual-, and ocular changes occur in the majority of patients during targeted anticancer therapies. Different mcAEs can be present with a variable symptom burden and affect upon patients’ quality of life. Use of standardized targeted therapy specific tools allows comparison of outcomes from different studies and in meta-analyses, advancing patient care and improving outcomes. A mcAE specific assessment tool about symptom burden is currently not available. A questionnaire which assesses both targeted therapy specific patient reported outcomes (PRO) measures and healthcare provider reported outcomes (HPRO) measures is warranted, therefore. Methods: A three-phase process was utilized for item generation, item reduction and scale construction. A comprehensive literature review was performed in PubMed, CINAHL and Embase, and study protocols were screened. Keywords were assessment, questionnaire, tool, EGFRI, and rash. All items with potential relevance for the tool were selected for further evaluation. Twentyone EGFRI treated patients filled out the draft-questionnaire. Results: The search resulted in a simultaneous tool in the form of 61 PRO, and 50 HPRO items. Both tools assess experienced mcAEs inclusive number of papules and pustules, area involved, severity and duration of the symptoms, used products, effectiveness of various (medical) interventions, treatment adherence and distress from the symptoms. Patient input resulted in the addition of 1 item, modification of 7 items, and deletion of 2 items. Conclusions: A novel tool has been generated to assess the experienced mcAEs and effectiveness of supportive care interventions. Since the patient and the provider report mcAEs simultaneously, the provided data are directly comparable, facilitating assessment of quality of life and, therefore, improving quality of medical care.


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