Background

 

Patient-reported outcomes (PRO) are on the rise

Since the 1990s, there has been growing awareness of the importance to complement the traditional physician-rated assessment of the patient’s health status by an assessment provided by the patients themselves. These patient-reported outcomes (PROs) include physical as well as psychosocial symptoms (e.g. medication side-effects, gastrointestinal symptoms, fatigue, pain, anxiety, and depression), often subsumed under the construct of Quality of Life (QOL).

How PROs can be assessed: paper-pencil VS electronic data capture

Paper and pencil based measures of such outcomes have already been widely adopted in research. However, this has been connected with a considerable amount of time both for the patient having to complete the various assessment instruments as well as for the staff involved in the process of data entry and management. Moreover, PRO data is not available in real-time and therefore, of little use for individualised clinical decision making in daily clinical practice.

In contrast, electronic PRO data capture (ePRO) allows a reduction of required human resources making the routine collection of data feasible in busy clinical practices. It enables real-time QOL assessments and immediate presentation of results to clinicians. Several studies have shown that the use of computer technology is an acceptable and efficient method for obtaining self-reported information on QOL. These data are highly comparable to those collected by paper and pencil approaches. Despite a general lack of computer experience, touch-screen computer surveys are also acceptable for older patients. This is confirmed by concordant findings in the literature.

Benefits of ePRO

ePRO with CHES offers several benefits for both medical research and daily clinical practice. These include a variety of issues related to structural aspects, clinical routine and research:

 

structural issues clinical routine research
saving of monetary resources (though software support and update requires financial expenditures) for printing, postage, human workforce systematic screening for potential problems assessing high quality data
saving of human workforce (thanks to automated collection, processing and presentation of data) using screening results for adequate intervention or referral gaining a deeper understanding of patients’ experience of their disease over the course of treatment
immediate availability of entered data conspicuous scores can guide the patient-physician communication complementing hospital assessments with information about patients’ health while staying at home
availability of different output formats to meet the needs of the recipient of data (physicians, patients, general practitioner, etc.) physicians get access to information on patients’ subjective perception of their life situation and health condition easy standardized assessment of data required for study protocols (if needed in multiple centers)
secure data collection, processing and storage therapy and treatment planning can take patient’s preferences into account using comprehensive data bases for elaborate statistical analyses
possibility to use computer adaptive testing (CAT): improving measurement precision while reducing patient burden evaluating the effect of tailored interventions having real life data on hand for scientific investigation
creating a longitudinal database displaying useful QOL data through periodical monitoring during routine clinical practice
ePROs via the internet provide information about patients health status even when they are not hospitalized and enable timely intervention

 

The ePRO software of your choice: CHES
To meet the increasing demand for ePRO, we have engaged in activities dealing with the use of real-time feedback of PRO data in clinical practice since 2004. Our efforts have resulted in the development of the software called Computer-based Health Evaluation System (CHES). CHES allows the computerised collection, calculation and presentation of PRO and clinical data. The feasibility of the use of CHES has been proven within several studies. Next to use in a research and clinical routine setting, CHES can play an important role in contributing to quality assurance as well.

Up to date, more than 16,000 PRO assessments were performed with CHES within clinical trials and daily clinical routine. The software is under continuous development and improvement