Background: To permit timely mitigation of adverse effects on overall clinical outcome, it is essential to understand how the pandemic influences distress and health‐related quality of life (HRQOL) in cancer patients during the coronavirus disease 2019 (COVID‐19) pandemic.Methods: In this cross‐sectional study, adult cancer patients, without COVID‐19 symptoms, completed a 13‐item questionnaire about the pandemic's impacts on distress and everyday‐life; associations with age, sex, or impaired HRQOL were then assessed by binary logistic regressions. In a subsample of patients with HRQOL assessment available from both before and during the pandemic, we evaluated the pandemic's impact on longitudinal changes in HRQOL reported within 6 months before versus during the COVID‐19 lockdown using McNemar's test, and thresholds for clinical importance.Results: We consecutively enrolled 240 patients with solid (50%) or hematological (50%) cancers. Median age was 67 years, 46% were females. The majority ranked heeding their health (80%) and keeping their appointment schedule in hospital (78%) as important. Being younger than 60, or aged 60–70 was independently associated with limitations in everyday life (OR = 3.57,p < 0.001; and 2.05,p = 0.038); female individuals and those with restricted emotional functioning were more distressed by the COVID‐19 situation (OR = 2.47,p = 0.040; and 3.17,p = 0.019); the latter group was also significantly more concerned about being a patient at risk (OR = 2.21,p = 0.029). Interestingly, in a subsample of patients (n = 47), longitudinal comparisons pre‐ versus during the pandemic revealed that HRQOL was not substantially affected by the pandemic.Conclusion: Particularly younger and female cancer patients, and those with impaired emotional functioning are distressed by COVID‐19. During the first COVID‐19 lockdown, cancer patients remained predominantly resilient. This analysis highlights the need to mitigate distress situations in vulnerable patients and thereby enhance resilience during pandemics.

Background: Patient-reported outcomes are considered the gold standard for assessing subjective health status in oncology patients. Electronic assessment of patient-reported outcomes (ePRO) has become increasingly popular in recent years in both clinical trials and practice. However, there is limited evidence on how well older patients with cancer can complete ePRO assessments. Objective: We aimed to investigate how well adult patients with cancer of different age ranges could complete ePRO assessments at home and in a treatment facility and to identify factors associated with the ability to complete questionnaires electronically. Methods: This retrospective longitudinal single-center study involved survivors of cancer who participated in inpatient rehabilitation. Patients completed ePRO assessments before rehabilitation at home (T1) and after rehabilitation at the facility (T2). We analyzed the rate of patients who could complete the ePRO assessment at T1 and T2, the proportion of patients who required assistance, and the time it took patients to complete standardized questionnaires. Multivariate logistic regression analyses were conducted to identify predictors of ePRO completion rate and the need for assistance. Results: Between 2017 and 2022, a total of 5571 patients were included in this study. Patients had a mean age of 60.3 (SD 12.2) years (range 18 to 93 years), and 1135 (20.3%) of them were classified as geriatric patients (>70 years). While more than 90% (5060/5571) of all patients completed the ePRO assessment, fewer patients in the age group of >70 years (924/1135, 81.4% at T1 vs 963/1135, 84.8% at T2) completed the assessment. Approximately 19% (1056/5571) of patients reported a need for assistance with the ePRO assessment at home, compared to 6.8% (304/4483) at the institution. Patients older than 70 years had a significantly higher need for assistance than those in younger age groups. Moreover, a gender difference was observed, with older women reporting a higher need for assistance than men (71-80 years: women requiring assistance 215/482, 44.6% vs men 96/350, 27.4%; P<.001 and >80 years: women 102/141, 72.3% vs men 57/112, 50.9%; P<.001). On average, patients needed 4.9 (SD 3.20) minutes to remotely complete a 30-item questionnaire (European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire) and patients in the older age groups took significantly longer compared to younger age groups. Lower age and higher physical functioning were the clearest predictors for both the ePRO completion rate and the need for assistance in the multivariate regression analysis. Conclusions: This study’s results indicate that ePRO assessment is feasible in older individuals with cancer, but older patients may require assistance (eg, from relatives) to complete home-based assessments. It may be more feasible to conduct assessments in-house in this population. Additionally, it is crucial to carefully consider which resources are necessary and available to support patients in using ePRO devices.

The aim of cancer rehabilitation is to help patients regain functioning and social participation. In order to evaluate and optimize rehabilitation, it is important to measure its outcomes in a structured way. In this article, we review the different types of clinical outcome assessments (COAs), including Clinician-Reported Outcomes (ClinROs), Observer-Reported Outcomes (ObsROs), Performance Outcomes (PerfOs), and Patient-Reported Outcomes (PROs). A special focus is placed on PROs, which are commonly defined as any direct report from the patient about their health condition without any interpretation by a third party. We provide a narrative review of available PRO measures (PROMs) for relevant outcomes, discuss the current state of PRO implementation in cancer rehabilitation, and highlight trends that use PROs to benchmark value-based care. Furthermore, we provide examples of PRO usage, highlight the benefits of electronic PRO (ePRO) collection, and offer advice on how to select, implement, and integrate PROs into the cancer rehabilitation setting to maximize efficiency.

Background: The European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 is a widely used cancer-specific questionnaire assessing 15 domains of health-related quality of life (HRQoL). Our aim was to facilitate the interpretation of scores on this questionnaire by providing Austrian normative data based on a general population sample.Methods: The calculation of normative data was based on the EORTC QLQ-C30 data collected from an Austrian general population sample that was part of an international online panel study on the development of European normative data. Data reported herein were stratified and weighted by age and sex. Normative data were calculated for all 15 HRQoL domains of the EORTC QLQ-C30. For precise predictions of EORTC QLQ-C30 scores, a regression model based on sex, age and the presence of health conditions was built.Results: The Austrian sample comprised 1002 Austrian participants (50.1% female, 51.4% when weighted by age and sex based on United Nation statistics). The mean age was 53.7 years (weighted: 47.7 years) and 53.6% (weighted: 47.4%) reported at least one health condition. Men reported better physical (Cohen’sd = 0.17) and emotional (Cohen’sd = 0.17) functioning as well as less fatigue (Cohen’sd = 0.18) and insomnia (Cohen’sd = 0.25) compared with women. Younger individuals (< 40 years) reported less dyspnea (Cohen’sd = 0.61) and pain (Cohen’sd = 0.51), whereas older individuals (≥60 years) reported better emotional functioning (Cohen’sd = 0.55).Conclusions: We present Austrian normative data for the EORTC QLQ-C30. Differences by age and sex are mostly in line with the findings of other European normative studies. The Austrian population sample shows higher HRQoL and lower morbidity compared with other European countries. The normative data in this study will facilitate the interpretation of EORTC QLQ-C30 scores in oncological practice and research at a national and international level (including cross-cultural comparisons).

Background: Patient portals offer the possibility to assess patient-reported outcome measures (PROMs) remotely, and first evidence has demonstrated their potential benefits. Objective: In this study, we evaluated patient use of a web-based patient portal that provides patient information and allows online completion of PROMs. A particular focus was on patient motivation for (not) using the portal. The portal was developed to supplement routine monitoring at the Department of Internal Medicine V in Innsbruck. Methods: We included patients with multiple myeloma and chronic lymphocytic leukemia who were already participating in routine monitoring at the hospital for use of the patient portal. Patients were introduced to the portal and asked to complete questionnaires prior to their next hospital visits. We used system access logs and 3 consecutive semistructured interviews to analyze patient use and evaluation of the portal. Results: Between July 2017 and August 2020, we approached 122 patients for participation in the study, of whom 83.6% (102/122) consented to use the patient portal. Patients were on average 60 (SD 10.4) years old. Of patients providing data at all study time points, 37% (26/71) consistently used the portal prior to their hospital visits. The main reason for not completing PROMs was forgetting to do so in between visits (25/84, 29%). During an average session, patients viewed 5.3 different pages and spent 9.4 minutes logged on to the portal. Feedback from interviews was largely positive with no patients reporting difficulties navigating the survey and 50% of patients valuing the self-management tools provided in the portal. Regarding the portal content, patients were interested in reviewing their own results and reported high satisfaction with the dynamic self-management advice, also reflected in the high number of clicks on those pages. Conclusions: Patient portals can contribute to patient empowerment by offering sought-after information and self-management advice. In our study, the majority of our patients were open to using the portal. The low number of technical complaints and average time spent in the portal demonstrate the feasibility of our patient portal. While initial interest was high, long-term use was considerably lower and identified as the main area for improvement. In a next step, we will improve several aspects of the patient portal (eg, including a reminder to visit the portal before the next appointment and closer PROM symptom monitoring via an onconurse).

Background: The use of software to monitor patient-reported outcome measures (PROMs) can improve outcomes for patients with cancer receiving anticancer therapy; however, evidence from applications used in routine clinical practice is lacking. Objective: We aimed to investigate adherence to and patient perceptions of a weekly, web-based PROM symptom monitoring program in routine clinical practice for patients with Multiple Myeloma. Moreover, we aimed to capture how clinical alerts prompted by the system influenced clinical care. Methods: We conducted a single-center longitudinal observational study to evaluate patient adherence to and perceptions of the PROM monitoring software in routine practice. Patients with Multiple Myeloma remotely completed weekly treatment-specific PROMs to monitor key symptoms via a dedicated web-based platform. Alarming symptoms triggered clinical alerts in the application for the treatment team, which could initiate clinical interventions. The primary outcomes were the web-based assessment completion rate and patients’ perceptions of the monitoring program, as assessed by an evaluation questionnaire. Moreover, clinical alerts prompted by the system and consequential clinical interventions were analyzed. Results: Between July 2021 and June 2022, a total of 55 patients were approached for participation; 39 patients participated (24, 61% male, mean age 63.2, SD 9.2 years). The median assessment completion rate out of all weekly scheduled assessments was 70.3% (IQR 41.2%-89.6%). Most patients (77%) felt that the health care team was better informed about their health status due to the web-based assessments. Clinical alerts were triggered for 1758 of 14,639 (12%) reported symptoms. For 548 of 1758 (31.2%) alerts, the symptom had been registered before and no further action was required; for 348 of 1758 (19.9%) alerts, telephone consultation and self-management advice sufficed. Higher-level interventions were seldom needed in response to alerts: referral to a doctor or specialist (88/1758, 5% alerts), medication changes (22/1758, 1.3%), scheduling additional diagnostics (9/1758, 0.5%), or unplanned emergency visits (7/1758, 0.4%). Most patients (55%) reported the calls in response to alerts gave them “quite a bit” or “very much” of an added feeling of security during therapy. Conclusions: Our study shows that high adherence to regular and tailored PROM monitoring can be achieved in routine clinical care. The findings provide valuable insight into how the PROM monitoring program and the clinical alerts and resulting interventions shaped clinical practice. Trial Registration: ClinicalTrials.gov NCT05036863; https://clinicaltrials.gov/study/NCT05036863