Search

Purpose: Serial patient-reported outcome (PRO) measurements in clinical practice are associated with a better quality of life and survival. Recording electronic PROs using smartphones is an efficient way to implement this. We aimed to assess the feasibility of the electronically filled Edmonton Symptom Assessment System (e-ESAS) scale in the lower-middle-income country (LMIC) setting., Methods: Baseline clinical features and conventional paper-based ESAS (p-ESAS) were collected in newly diagnosed patients with solid organ tumors. Text message link was sent to these patients for filling e-ESAS. ESAS was categorized into physical, psychological, and total symptom domains. Scores were divided into none to mild (0-3) and moderate to severe (4-10). Intraclass correlation coefficients (ICCs) were used to determine the correlation between p-ESAS and e-ESAS. Multivariable logistic regression was used to identify independent factors affecting symptom burden., Results: Of 1,160 participants who filled out p-ESAS, 595 completed both e-ESAS and p-ESAS questionnaires and were included in the final analysis. Moderate to severe physical, psychological, and total symptom scores were seen in 39.8%, 40%, and 39% of participants. Tiredness and anxiety were the most common physical and psychological symptoms, respectively. ICCs between the p-ESAS and e-ESAS varied between 0.75 and 0.9. Total symptom scores were independently predicted by metastatic disease (odds ratio [OR], 1.83; 95% CI, 1.26 to 2.67; P = .001) and a higher level of education (OR, 0.42; 95% CI, 0.25 to 0.72; P = .001)., Conclusion: Paper-based and electronically filled ESASs have good intraobserver reliability across individual symptoms and domain scores in a representative cohort at a tertiary care institute in the LMIC. This may help us incorporate e-ESAS in routine clinical care in the real-world setting with financial, infrastructural, and manpower limitations.

Background: Patients dying with cancer can experience various physical and psychological symptoms. We aimed to determine the type and severity of symptoms within the last 6 months of life in a large real-world cohort of patients with cancer., Methods: We examined prospectively collected patient-reported outcomes of patients with lung, colorectal, breast, prostate or pancreatic cancer using the revised Edmonton Symptom Assessment System (ESASr) questionnaire from a large province in Canada from 2016 to 2017. The ESASr was categorized into physical and psychological symptom subscores and total symptom score, and each was classified as none to mild (0-3) or moderate to severe (4-10) based on intensity. Multivariable logistic regression analyses were performed to evaluate the relationship between clinical characteristics and symptom scores., Results: We identified 1159 patients eligible for analysis, of whom 52.2% were men and median age was 68 years. There were 613, 192, 149, 111 and 94 patients with lung, colorectal, breast, prostate and pancreatic cancer, respectively. While approximately half of patients reported moderate to severe physical symptom subscores and total symptom scores, only one-third reported moderate to severe psychological subscores. On multivariable logistic regression analyses, women were more likely to report moderate to severe physical (odds ratio [OR], 1.52; 95% confidence interval [CI], 1.08-2.12; P = 0.016), psychological (OR, 1.60; 95% CI, 1.14-2.26; P = 0.006) and total symptom scores (OR, 1.80; 95% CI, 1.28-2.51; P = 0.001). Patients with lung cancer were also more likely to report moderate to severe physical and psychological subscores (OR, 1.95; 95% CI, 1.28-2.96; P = 0.002 and OR, 1.78; 95% CI, 1.13-2.81; P = 0.013) and total symptom scores (OR, 1.83; 95% CI, 1.20-2.81; P = 0.005). Finally, those closer to death were more likely to report moderate to severe physical symptom subscores (OR, 2.07; 95% CI, 1.33-3.23; P = 0.001) and total symptom scores (OR, 2.29; 95% CI, 1.46-3.60; P < 0.001), but not psychological symptom scores (OR, 1.34; 95% CI, 0.84-2.14; P = 0.210)., Conclusions: There is significant symptom burden in patients with cancer near the end-of-life. Further, physical symptoms appear to be more intense than psychological symptoms. Symptom-directed care is still needed to improve the quality of end-of-life.

Objective: There are limited data on patient-reported outcomes near the end of life in patients with gynaecologic cancers. This study aimed to assess the symptom burden in the last 6 months of life in a real-world cohort., Methods: Patients diagnosed with metastatic gynaecologic malignancies from 2016 to 2019 who completed the revised Edmonton Symptom Assessment System (ESASr) questionnaire within 6 months of death in a large Canadian province were identified. Patient-reported symptom scores were categorized as none to mild (0-3) and moderate to severe (4-10). Individual symptoms were subsequently grouped into physical, psychological, and total subscores. The severity of symptoms was further analyzed for any associations with age, time to death, and primary tumour site (ovarian vs. uterocervical and vulvovaginal)., Results: We identified 107 patients with gynaecologic malignancies including 59 ovarian, 29 uterocervical, and 19 vulvovaginal cancers. The median ages at diagnosis and questionnaire completion were 64 and 65 years, respectively. The median time from completing the ESASr questionnaire to death was 65 days. Overall, physical and psychological symptoms were moderate to severe in 57.9% and 40.2% of patients, respectively. Among the individual symptoms, tiredness was the most commonly reported moderate to severe symptom (74.9%), while shortness of breath was least commonly reported (31.6%). While physical (P < 0.001) and total symptom (P = 0.009) subscores were more likely to be moderate to severe in intensity as death approached, the psychological subscore (P = 0.744) had no relationship with time to death. Longer time to death was predictive of lower physical (P = 0.002) and total symptom (P = 0.002) subscores, while a primary uterocervical cancer site was associated with a lower psychological symptom subscore (P = 0.042)., Conclusions: In the real-world setting, unique symptom trajectories can emerge for patients with gynaecologic cancer near the end of life. Knowledge of these specific symptom patterns can help inform the development and delivery of targeted palliative interventions to improve quality of life for these patients., (Copyright © 2020 The Society of Obstetricians and Gynaecologists of Canada/La Société des obstétriciens et gynécologues du Canada. Published by Elsevier Inc. All rights reserved.)

Health-related quality of life (HRQOL) in retinoblastoma survivors was assessed using parent proxy report of PedsQL(TM) 4.0 generic core scale. One hundred twenty-two parents of retinoblastoma survivors filled the questionnaire satisfactorily. This was compared with parent-reported HRQOL of 50 siblings. The median age of survivors was 98 (range, 60-247) months and male:female ratio was 2:1. The overall parent-reported HRQOL was significantly worse in survivors as compared to controls (74.4 ± 8.5 vs. 85.1 ± 4.6, P < 0.001). All health domains were significantly affected when compared with controls. None of the baseline and treatment-related factors predicted HRQOL., (© 2016 Wiley Periodicals, Inc.)

Background: With current modalities, cure rates of retinoblastoma are high and hence the number of survivors is increasing. However, data on quality of life (QOL) are minimal., Procedure: We analyzed QOL in 122 retinoblastoma survivors using the PedsQL(TM) 4.0 generic core scale. The self-reported questionnaire was filled by children of more than 5 years of age who had completed treatment for more than 12 months. The questionnaire consists of 23 questions on physical, social, emotional, and school domains on a scale from 0 to 4. This was converted to a scale from 0 to 100, where higher values represented better QOL. The QOL was compared with 50 siblings. Factors predicting the QOL were assessed., Results: The median age of retinoblastoma survivors was 98 months (range 60-247) and 68% were males. Overall QOL was significantly poorer in retinoblastoma survivors as compared with the controls. The emotional health domain of QOL was significantly affected. Difficulties in maintaining friendships and competing were reported in the social health domain. The school health domain showed significantly higher absenteeism. However, the physical health domain, including household work, exercise, and self-care, was similar in both the groups. Lower age at diagnosis (≤ 18 months) predicted better QOL (P = 0.05), whereas age at assessment, sex, IRSS stage, and previous surgery and radiotherapy were not predictive of poor QOL., Conclusions: We found a significantly poorer QOL in retinoblastoma survivors with the psychosocial health domain being more affected than the physical domain. Age less than 18 months at diagnosis predicted better QOL., (© 2015 Wiley Periodicals, Inc.)