scholarly journals Results from a 1-day workshop on the assessment of quality of life in cancer patients: a joint initiative of the Japan Clinical Oncology Group and the European Organisation for Research and Treatment of Cancer

2020 ◽  
Vol 50 (11) ◽  
pp. 1333-1341
Author(s):  
Mitsumi Terada ◽  
Kenichi Nakamura ◽  
Francesca Martinelli ◽  
Madeline Pe ◽  
Junki Mizusawa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Clinical Oncology ◽  
Outcome Research ◽  
Patient Reported Outcome ◽  
Oncology Group ◽  
Japan Clinical Oncology Group ◽  
European Organisation ◽  
Patient Reported

Abstract This report summarizes the presentations and discussion in the first Japan Clinical Oncology Group-European Organisation for Research and Treatment of Cancer Quality of Life/Patient-Reported Outcome workshop funded by the National Cancer Center Hospital that was held on Saturday, 1 September 2018 in Tokyo, Japan. The infrastructure and understanding regarding the Quality of Life/Patient-Reported Outcome assessment of cancer patients in Japan is still immature, in spite of the increased demand for oncological Patient-Reported Outcome research felt not only by researchers but also by patients or other stakeholders of cancer drug development. The workshop aimed to share each perspective, common issues to be considered and future perspectives regarding the strong alliance between the European Organisation for Research and Treatment of Cancer Quality of Life Group and the Japan Clinical Oncology Group for Quality of Life/Patient-Reported Outcome research as well as explore the possibility of conducting collaborative research. European Organisation for Research and Treatment of Cancer is a leading international cancer clinical trials organization, and its Quality of Life Group is a global leader in the implementation of Quality of Life research in cancer patients. The three invited speakers from the European Organisation for Research and Treatment of Cancer Quality of Life Group presented their perspective, latest methodology and ongoing projects. The three speakers from the Japan Clinical Oncology Group presented their current status, experience and some issues regarding data management or interpretation of the Patient-Reported Outcome data. The two patient advocates also shared their expectations in terms of advances in cancer research based on the Patient-Reported Outcome assessment. As the next steps after this workshop, the Japan Clinical Oncology Group and European Organisation for Research and Treatment of Cancer have decided to cooperate more closely to facilitate Patient-Reported Outcome research in both the groups, and the Japan Clinical Oncology Group has approved the establishment of a new committee for Quality of Life/Patient-Reported Outcome research in Japan.

scholarly journals Patient-Reported Outcome Coordinator Did Not Improve Quality of Life Assessment Response Rates: A Report from the Children's Oncology Group

PLoS ONE ◽  
2015 ◽  
Vol 10 (4) ◽  
pp. e0125290 ◽  
Author(s):  
Donna Johnston ◽  
Robert Gerbing ◽  
Todd Alonzo ◽  
Richard Aplenc ◽  
Rajaram Nagarajan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Response Rates ◽  
Patient Reported Outcome ◽  
Life Assessment ◽  
Improve Quality ◽  
Oncology Group ◽  
Quality Of Life Assessment ◽  
Patient Reported

scholarly journals Characteristics and patient-reported outcomes associated to dropout in severely affected oncological patients

2021 ◽  
Author(s):  
Pimrapat Gebert ◽  
Daniel Schindel ◽  
Johann Frick ◽  
Liane Schenk ◽  
Ulrike Grittner
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Cancer Patients ◽  
Patient Reported Outcomes ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Poor Quality ◽  
Drop Out ◽  
Patient Reported

Abstract BackgroundPatient-reported outcome measures (PROMs) are commonly used and are surrogates for clinical outcomes in cancer research. In the research setting of very severe diseases such as cancer, it is difficult to avoid the problem of incomplete questionnaires from drop-out or missing data due to patients who deceased during observation period. We aimed to explore patient characteristics and patient-reported outcomes associated with the time-to-dropout. MethodsIn the Oncological Social Care Project (OSCAR) study the condition of participants was assessed four times within 12 months (t0: baseline, t1: 3 months, t2: 6 months, and t3: 12 months) by validated PROMs. We performed competing-risks regression based on Fine and Gray’s proportional sub-distribution hazards model for exploring factors associated with time-to-dropout. Death was considered as competing risk. ResultsThree hundred sixty-two participants were analyzed in the study. 193 (53.3%) completed follow-up at 12 months, 67 (18.5%) patients dropped out, and 102 patients (28.2%) died during the study period. Poor subjective social support was related to higher risk for drop-out (SHR=2.10; 95%CI: 1.01 – 4.35). Lower values in health-related quality of life were related to drop-out and death. The subscales global health status/QoL, role functioning, physical functioning, and fatigue symptom in the EORTC QLQ-C30 were key characteristics associated with early drop-out.ConclusionSeverely affected cancer patients with poor social support and poor quality of life seem more likely to drop out of studies compared to patients with higher levels of social support and quality of life. This should be considered when planning studies assessing cancer patients. Methods to monitor drop-outs timely and handle missing outcomes might be used. Results of such studies have to be interpreted with caution in light of the particular drop-out mechanisms.

scholarly journals A Novel Digital Patient-Reported Outcome Platform for Head and Neck Oncology Patients–-A Pilot Study

2016 ◽  
Vol 9 ◽  
pp. CMENT.S40219 ◽  
Author(s):  
Maria K. Peltola ◽  
Joel S. Lehikoinen ◽  
Lauri T. Sippola ◽  
Kauko Saarilahti ◽  
Antti A. Mäkitie
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Side Effects ◽  
Head And Neck ◽  
Cancer Patients ◽  
Early Stage ◽  
Patient Reported Outcome ◽  
Patient Reported

Introduction The patient's role in toxicity reporting is increasingly acknowledged. There is also a need for developing modern communication methods between the patient and the medical personnel. Furthermore, the increasing number of head and neck cancer (HNC) patients is reflected in the volume of treatment follow-up visits, which remains a challenge for the health care. Electronic patient-reported outcome (ePRO) measures may provide a cost-efficient way to organize follow-up for cancer patients. Materials and Methods We tested a novel ePRO application called Kaiku®, which enables real-time, online collection of patient-reported outcomes, such as side effects caused by treatment and quality of life. We conducted a pilot study to assess the suitability of Kaiku® for HNC patients at the Department of Oncology, Helsinki University Hospital, Helsinki, Finland. Patients used Kaiku® during and one month after radiotherapy to report treatment-related side effects and quality of life. Two physicians and a nurse performed the practical electronic communication part of the study. Results Five of the nine patients agreed to participate in the study: three of them had local early-stage larynx cancer (T2N0, T1aN0, and T2N0) and the remaining two patients had early-stage base of tongue cancer (T2N0 and T1N2b). The degree of side effects reported by the patients via Kaiku® ranged from mild to life threatening. The number of outcome data points on patients' progress was significantly increased, which resulted in a better follow-up and improved communication between the patient and the care team. Conclusions Kaiku® seems to be a suitable tool to monitor side effects and quality of life during and after radiotherapy among HNC patients. Kaiku® and similar tools could be useful in organizing a cost-effective follow-up process for HNC patients. We recommend conducting a larger study to further assess the impact of an ePRO solution in routine clinical practice. • ePRO solutions may aid in the follow-up for cancer patients. • They seem suitable to monitor, for example, side effects and quality of life. • These systems ensure fast patient-driven reporting.

scholarly journals Translation and validation of two disease-specific patient-reported outcome measures (Bladder Cancer Index and FACT-Bl-Cys) in Dutch bladder cancer patients

2019 ◽  
Vol 3 (1) ◽  
Author(s):  
Charlotte T. J. Michels ◽  
Carl J. Wijburg ◽  
Inger L. Abma ◽  
J. Alfred Witjes ◽  
Janneke P. C. Grutters ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bladder Cancer ◽  
Clinical Practice ◽  
Cancer Patients ◽  
Radical Cystectomy ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Disease Specific

Abstract Background The Bladder Cancer Index (BCI) and Functional Assessment of Cancer Therapy-Bladder-Cystectomy (FACT-Bl-Cys) were developed to measure disease-specific health-related quality of life (HRQOL) in bladder cancer patients and patients treated with radical cystectomy, respectively. Both patient-reported outcome measures (PROMs) are frequently used in clinical practice, but are not yet validated according to the COSMIN criteria and not yet available in Dutch. Therefore, the aim of this study was to translate the BCI and FACT-Bl-Cys into Dutch and to evaluate their measurement properties according to the COSMIN criteria. Methods The BCI and FACT-Bl-Cys were translated into Dutch using a forward-backward method, and subsequently administered at baseline (pre-operatively) and 3 months post-operatively in bladder cancer patients who received a radical cystectomy. Validity (content and construct), reliability (internal consistency, test-retest reliability, and measurement error), floor and ceiling effects, and responsiveness were assessed according to the COSMIN criteria. Results Forward-backward translation encountered no particular linguistic problems. In total 260 patients completed the baseline measurement, while 182 patients completed the three-month measurement. Only a ceiling effect was identified for the BCI. Hypotheses testing for construct validity was satisfying, as 67% and 92% of the hypothesized correlations were confirmed. Structural validity was moderate for both measures, as confirmatory factor analyses showed limited fit. Reliability of both PROMs was good. The intraclass correlation coefficient (ICC) of the BCI domains ranged from 0.47 to 0.93, minimal value of Cronbach’s α was 0.70, smallest detectable change on group level (SDC group) ranged from 1.9 to 8.6. The ICC of the FACT-Bl-Cys domains ranged from 0.43 to 0.83, minimal value of Cronbach’s α was 0.77, SDC group was around 1. Only the FACT-Bl-Cys total score was found to be responsive to changes in generic quality of life. Conclusions The Dutch versions of the BCI and FACT-Bl-Cys were shown to be reliable and have good content validity. Structural validity was limited for both measures. Only the FACT-Bl-Cys total score was responsive to changes in generic HRQOL. Despite some limitations, both PROMs seem suitable for use in clinical practice and research.

Electronic patient reported outcome in Brazil: Insurance provider impact on adherence.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13590-e13590
Author(s):  
Thiago William Carnier Jorge ◽  
César Filho ◽  
Melina Campagnaro ◽  
Lorenzo Cartolano ◽  
Jean Singh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Symptom Management ◽  
Private Insurance ◽  
Patient Reported Outcome ◽  
Online Chat ◽  
Patient Reported ◽  
Nursing Team ◽  
Specific Symptoms

e13590 Background: Routine monitoring of cancer patients' symptoms during their journey can improve symptom management, quality of life, and survival. Wecancer App is an electronic patient-reported outcome tool, which also provides on-demand multidisciplinary digital support by nurses, psychologists and nutritionists. It also encompasses real time remote patient monitoring, symptoms diary to patient and medical staff, symptom monitoring, medication control and a content hub with reliable information. It is free to any patient who download the app. In this study, we aim to understand if insurance provider type (private, public or out of pocket) impact on app adherence. Methods: This study examined daily symptom reporting (with electronic patient-reported outcomes [e-PROs]) patterns in breast cancer patients, according to insurance provider. The following were observed: app adherence, numbers of reports, chat interactions, specific symptoms, symptoms alerts and wellness reports. Patients could report sixteen common symptoms through a mobile application, on their smartphones and tablets, for monitoring, symptom management and follow-up with a specialized nurse, determining care based on digital support clinical protocols through online chat. The nursing team action started at the moment of patient inclusion with the tutorial to download the App and training it with the patient/caregiver. The alerts made through the chat system guided the clinical actions of the nursing team in relation to online clinical management that can stratify the risk by crossing the intensity of symptoms by the CTCAE grading scale and PRO-CTCAE Measurement System and promote preventive educational conduct of vigilance and risk mitigation. Results: From January 2020 to January 2021, 543 female eligible patients downloaded the app. The e-PRO completion rates were superior to 90% at baseline, and 55.47% completed all on-treatment assessments. The app adherence for private insurance patients (PIP), 37.06% for public insurance patients (PIP) and 7.45% for out of pocket patients (OPP). 2,626 reports were made (46.41% IP; 28.58% OPP; 25% PHP); 1008 chat interactions (52.18% IP; 40.28% PHP; 7.54% OPP); 1144 number of symptoms reported (46,41% IP; 28.58% OPP; 25% PHP); specific symptoms most reported in all kind of service was tiredness, pain, nausea, tingling; 547 symptoms alerts (54.84% IP; 35.46% PHP; 9.7% OPP) and 451 wellness reports (55.43% IP; 35.03% PHP; 9.53% OPP). Conclusions: Private insurance patients are more adherent to ePROS than public insured or out of pocket patients. Lack of free internet access and digital literacy could be impacting on adherence and, ultimately, quality of life and survival. Further studies are warranted to understand how to improve equality for digital health tools.

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