Web-Based Patient-Reported Outcomes Using the International Consortium for Health Outcome Measurement Dataset in a Major German University Hospital: Observational Study

Abstract

BackgroundCollecting patient-reported outcome (PRO) data systematically enables objective evaluation of treatment and its related outcomes. Using disease-specific questionnaires developed by the International Consortium for Health Outcome Measurement (ICHOM) allows for comparison between physicians, hospitals, and even different countries.ObjectiveThis pilot project aimed to establish a digital system to measure PROs for new patients with breast cancer who attended the Charité Breast Center This approach should serve as a blueprint to further expand the PRO measurement to other disease entities and departments.MethodsIn November 2016, we implemented a Web-based system to collect PRO data at Charité Breast Center using the ICHOM dataset. All new patients at the Breast Center were enrolled and answered a predefined set of questions using a tablet computer. Once they started their treatment at Charité, automated emails were sent to the patients at predefined treatment points. Those emails contained a Web-based link through which they could access and answer questionnaires.ResultsBy now, 541 patients have been enrolled and 2470 questionnaires initiated. Overall, 9.4% (51/541) of the patients were under the age of 40 years, 49.7% (269/541) between 40 and 60 years, 39.6% (214/541) between 60 and 80 years, and 1.3% (7/541) over the age of 80 years. The average return rate of questionnaires was 67.0%. When asked about the preference regarding paper versus Web-based questionnaires, 6.0% (8/134) of the patients between 50 and 60 years, 6.0% (9/150) between 60 and 70 years, and 12.7% (9/71) over the age of 70 years preferred paper versions.ConclusionsMeasuring PRO in patients with breast cancer in an automated electronic version is possible across all age ranges while simultaneously achieving a high return rate.

Repeated Digitized Assessment of Risk and Symptom Profiles During Inpatient Treatment of Affective Disorder: Observational Study

“…During an assessment period of 1 year, we achieved an inclusion rate of 66.5% of patients with a diagnosed affective disorder. This rate is similar to those reported from other investigations performed on the general population and nonpsychiatric patient groups, which indicates that major depressive disorder or bipolar disorder symptomology does not constitute a barrier toward participation [37,38]. Adherence to assessments was high, and the dropout rate after initial participation was very low.…”

“…However, the percentage of participants who needed assistance was comparatively small, and even those who did require assistance were able to complete assessments regularly, which suggests that their difficulties with handling the equipment did not stop them from participating. Although our study did not assess subjective attitudes toward technology, previous studies [38,46] found that digital methods of data collection are well-accepted even among older adults. It can also be expected that technological literacy will rise in older populations over the years, as smartphones and tablets are becoming increasingly ubiquitous, which will alleviate the difficulties for this specific age group in the future.…”

Continuous digital collection of patient-reported outcomes during inpatient treatment for affective disorders – implementation and feasibility

“…During the assessment period of one year, we achieved an inclusion rate of 66.5% of patients with a diagnosed affective disorder. This rate is similar to that reported from other investigations performed on the general population and non-psychiatric patient groups, which indicates that MDD symptomology does not constitute a barrier towards participation (Grobbee et al, 2005; Karsten et al, 2018). Exclusion by the clinician or researcher and refusal to participate by the patients themselves were largely not due to symptom severity or cognitive impairment but for organisational reasons or a general disinterest in the study, which mirrors reasons for non-participation in research from non-psychiatric populations (Brintnall-Karabelas et al, 2011).…”

“…However, the percentage of participants who needed assistance was comparatively small and even those who did require assistance were able to complete assessments regularly, which suggests that their difficulties with handling the equipment did not stop them from participating. Although our study did not assess subjective attitudes toward technology, previous studies found that digital methods of data collection are well-accepted even among older adults (Horevoorts, Vissers, Mols, Melissa, & Van De Poll-Franse, 2015; Karsten et al, 2018). It can also be expected that technological literacy will rise in older populations over the years, as smartphones and tablets are becoming increasingly ubiquitous, which will alleviate the difficulties for this specific age group in the future.…”

Implementing ICHOM standard set for cataract surgery at IPO-Porto (Portugal): clinical outcomes, quality of life and costs

“…The standard sets should be applied in both routine clinical practice and clinical studies in order to standardize the measured outcomes worldwide [ 36 ], enabling global comparisons and benchmarking and driving improvements in relevant patient outcomes [ 35 , 37 ]. Currently, several healthcare institutions have adopted ICHOM standards for different conditions, such as pregnancy and childbirth [ 38 ], breast cancer [ 39 ], hip and knee osteoarthritis [ 25 ]. Although efforts in this regard have increased, there is still a limited understanding of how these standard sets perform in clinical settings, as few implementations are described in the literature.…”