Patient-reported outcomes (PRO) provide a more comprehensive picture of patients’ quality of life than do mere physicians’ ratings. Electronic data collection of PRO offers several advantages and allows assessments at patients’ homes as well. This study reports on patients’ personal internet use, their attitudes towards electronic and web-based PRO assessment (clinic-ePRO and home-ePRO) and the feasibility of these two assessment modes.

/pdf/evaluation-of-electronic-patient-reported-outcome-assessment-11f1kaonmb.pdf

Evaluation of electronic patient-reported outcome assessment with cancer patients in the hospital and at home

Purpose Missing data are a significant problem in clinical trials, particularly for quality of life (QOL), which cannot be obtained retrospectively. The purpose of this study was to evaluate the feasibility of an electronic web-based strategy for QOL data collection in a cooperative group radiation oncology trial setting. Methods and materials Radiation Therapy Oncology Group (RTOG) 0828 was a prospective National Cancer Institute cooperative group companion study of RTOG-0415, a randomized study of conventional versus hypofractionated radiation. Forty-nine English-speaking patients with favorable risk prostate cancer who enrolled on RTOG-0415 consented to using web-based technology for completing QOL. In RTOG-0415, using paper forms, the 6-month QOL compliance rate was 52%. The purpose of RTOG-0828 was to test the feasibility of a web-based strategy with the goal of increasing the 6-month QOL completion rate by 25% (from 52% to 77%) for a relative improvement of ~50%. The web-based tool used in this study was VisionTree Optimal Care (VTOC; VisionTree Software, Inc, San Diego, CA), a Health-Insurance-Portability-Accountability-Act secure, online technology that allows real-time tracking and e-mail reminders. The primary endpoint was the 6-month compliance rate for the validated QOL instrument, Expanded Prostate Index Composite. Results The QOL completion rate at baseline was 98%. Compared with the prior 52% QOL completion rate at 6 months using paper forms, the QOL web-based completion rate at 6 months was 90% (2-sided P value Conclusions This RTOG study suggests that a web-based strategy to collect QOL appears to be feasible in the cooperative group radiation oncology trial setting and is associated with an increase in the 6-month QOL compliance rate compared with the prior method of using paper forms. The RTOG plans to further test this strategy in a head-and-neck cancer trial across all participating RTOG sites.

https://www.practicalradonc.org/article/S1879-8500(13)00276-2/pdf

Can electronic web-based technology improve quality of life data collection? Analysis of radiation therapy oncology group 0828

Patient-reported outcomes are an important tool in clinical research. In the setting of cancer treatments, benefit of therapy is essentially characterised by improvement of survival as well as quality of life (QoL). A standardised instrument to assess QoL is the standardised QoL questionnaire of the European Organisation for Research and Treatment (EORTC QLQ-C30 questionnaire). QoL instruments provide data on different aspects (domains) of the framework of QoL. Using these questionnaires in studies provides data on how a treatment affects QoL in a group of patients.



The goal of our concept is to individualise QoL and to use validated instruments in order to integrate patients' perspectives and aims into treatment assessment, planning and control. We propose to use the domains of the EORTC QLQ-C30 and to ask the patient to determine which objectives besides survival are relevant for him and should be achieved by treatment. These individual goals can be used in a process of shared decision-making to choose and monitor treatment. In clinical studies, this approach would allow to recruit more patients who would most probably benefit from the therapy. In addition, supportive data could be gathered in correlation to treatment goals and actual benefits.

Integrating cancer patients' perspectives into treatment decisions and treatment evaluation using patient-reported outcomes--a concept paper.

Background: Quality of life (QoL) is frequently investigated as a secondary endpoint in clinical trials but is rarely evaluated in clinical practice. The present

Quality of Life and Symptom Evaluation in Daily Oncology Practice: A Survey of 150 Patients with Advanced Gastrointestinal Tumours Receiving Palliative Chemotherapy

Quality of life measurements are well established in cancer clinical trials. In daily clinical practice, where cancer patients often suffer from disease-specific symptoms and report unmet needs regarding their treatment, these measurements are not systematically implemented. The systematic (often computer-based) assessment of quality of life in daily cancer care has shown to be beneficial for patient-physician communication, symptom management, shared decision-making, and in creating a learning health system. Unfortunately, to date, routine electronic quality of life assessments are usually limited to large cancer facilities. Patient and physician barriers as well as barriers from the administrative side in particular are currently hindering the implementation of these systems into the broad spectrum of clinical cancer care. Cost-effectiveness analyses of existing systems, the inclusion of all relevant stakeholders, and clear implementation guidelines are required to introduce quality of life measurements in clinical cancer practice to improve the treatment of cancer survivors and to create a health care system that addresses all their disease-related needs.

Quality of Life Measurements: Any Value for Clinical Practice?

Background: Patient-reported outcomes, such as quality of life (QoL) assessment, are becoming more important as endpoint in clinical trials and for decision making regarding new anticancer product approvals. Nevertheless, numerous obstacles exist regarding the implementation of QoL assessment in the daily practice of medical oncologists. Regular, computerized or internet home-based QoL assessments could be a step forward. Methods: Using a 15-item paper questionnaire, we conducted a survey among 1580 cancer patients regarding their willingness to use internet QoL assessment, and collected personal data and information about current disease and performance status. Results: Younger patients (i.e. ≤65 years) significantly more often had internet access (78% versus 36%; χ2 test, p Conclusion: These data may serve as a basis for identifying patient groups willing to participate in pilot projects to evaluate the implementation of internet-based regular assessment of QoL in cancer.

Cancer patients and the Internet: a survey of the 'Quality of Life' Working Groups of the Arbeitsgemeinschaft für Internistische Onkologie and the Nord-Ostdeutsche Gesellschaft für Gynäkologische Onkologie.

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Cancer patients and the Internet: a survey of the 'Quality of Life' Working Groups of the Arbeitsgemeinschaft für Internistische Onkologie and the Nord-Ostdeutsche Gesellschaft für Gynäkologische Onkologie.