Electronic reporting of patient-reported outcomes in a fragile and comorbid population during cancer therapy – a feasibility study

Taarnhøj, Gry Assam; Lindberg, Henriette; Dohn, Line Hammer; Omland, Lise Høj; Hjøllund, Niels Henrik; Johansen, Christoffer; Pappot, Helle

doi:10.1186/s12955-020-01480-3

Cited by 26 publications

(39 citation statements)

References 36 publications

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“…While only a few of our patients directly mentioned a decline in motivation to complete ePROMs due to HCPs not picking up on the results during the consultations, this is in fact a frequent problem of PRO implementations in clinical settings [ 3 , 26 , 28 , 29 ]. For patients, there is little perceived benefit of completing the questionnaires if the results are not reviewed and discussed by HCPs.…”

Section: Discussionmentioning

confidence: 99%

Using the Computer-based Health Evaluation System (CHES) to Support Self-management of Symptoms and Functional Health: Evaluation of Hematological Patient Use of a Web-Based Patient Portal

Lehmann¹,

Buhl²,

Giesinger³

et al. 2021

J Med Internet Res

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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).

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Section: Discussionmentioning

confidence: 99%

Using the Computer-based Health Evaluation System (CHES) to Support Self-management of Symptoms and Functional Health: Evaluation of Hematological Patient Use of a Web-Based Patient Portal

Lehmann¹,

Buhl²,

Giesinger³

et al. 2021

J Med Internet Res

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“…The overall completeness of data was 93% (7% missing values). See a detailed description of the adherence data in a separate publication [ 19 ].…”

Section: Resultsmentioning

confidence: 99%

“…), if needed. Further details regarding these procedures can be reviewed in a separate publication [ 19 ].…”

Section: Methodsmentioning

confidence: 99%

Patient-Reported Outcomes, Health-Related Quality of Life, and Clinical Outcomes for Urothelial Cancer Patients Receiving Chemo- or Immunotherapy: A Real-Life Experience

Taarnhøj

Lindberg

Johansen

et al. 2021

JCM

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Patients with urothelial cell carcinoma (UCC) often have comorbidities, which cause trouble for the completion of oncological treatment, and little is known about their quality of life (QoL). The aim of the present study was to obtain and describe patient-reported outcomes (PRO) and QoL data from UCC patients in the treatment for locally advanced muscle-invasive or metastatic UCC. A total of 79 patients with UCC completed four questionnaires (EORTC QLQ-C30, QLQ-BLM30, HADS, and select PRO-CTCAE™ questions) once weekly during their treatment. From those, 26 patients (33%) underwent neoadjuvant treatment for local disease while 53 patients (67%) were treated for metastatic disease. Of all patients, 54% did not complete the planned treatment due to progression, nephrotoxicity, death, or intolerable symptoms during treatment. The five most prevalent PRO-CTCAE grade ≥ 2 symptoms were frequent urination (37%), fatigue (35%), pain (31%), dry mouth (23%), and swelling of the arms or legs (23%). The baseline mean overall QoL was 61 (±SD 24) for all patients (neoadjuvant (73, ±SD 19) and metastatic (54, ±SD 24)) and remained stable over the course of treatment for both groups. A stable overall QoL was observed for the patients in this study. More than half of the patients did not, however, complete the planned treatment. Further supportive care is warranted for bladder cancer patients.

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“…The specific scores from the EORTC and HADS questionnaires are hence the aim of this study reported elsewhere …”

Section: Methodsmentioning

confidence: 99%

Patient reported symptoms associated with quality of life during chemo‐ or immunotherapy for bladder cancer patients with advanced disease

et al. 2020

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Background: Bladder cancer (BC) patients with advanced disease have poor outcomes. The use of patient-reported outcomes (PROs) could lead to improvements in symptom management and hence quality of life (QoL). The aim of this study is to report correlations between selected PROs and QoL and thus to present symptoms that influence QoL. Identification of these symptoms during treatment can lead to earlier symptom management and thus secure improvements in QoL. Methods: BC patients in chemo-or immunotherapy for locally advanced or metastatic disease reported weekly PROs for the duration of their treatment. The PROs included EORTC QLQ-C30 and QLQ-BLM30 and 45 selected PRO-CTCAE items. Spearman's correlation analysis was performed for all PRO-CTCAE items and QLQ-C30 global QoL and subdomains. Results: In this study, 78 BC patients reported 724 questionnaires. Spearman's analysis showed significant correlations between almost all PRO-CTCAE items and the expected domain of QoL. The PRO-CTCAE items with the strongest correlations with QoL were anxiety (F, frequency item) and emotional function (r s = −0.603, P < .0001), concentration (S, severity item) and cognitive function (r s = −0.704, P < .0001), discouraged (F) and emotional function (r s = −0.659, P < .0001), fatigue (S) and role function (r s = −0.659, P < .0001) and sad (F) and emotional function (r s = −0.711, P < .0001). The weakest correlations were found for the PRO-CTCAE items urinary frequency, incontinence and urge, all with variations in the direction and significance of the correlations. Conclusions: This study delivers information on which PROs may influence QoL for patients in clinical trials or daily clinic. Psychological issues have a strong impact on QoL and should be dealt with during treatment to secure the best possible QoL for BC patients. K E Y W O R D S chemotherapy, immunotherapy, Patient-reported outcomes, quality of life, urinary bladder neoplasms

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Electronic reporting of patient-reported outcomes in a fragile and comorbid population during cancer therapy – a feasibility study

Cited by 26 publications

References 36 publications

Using the Computer-based Health Evaluation System (CHES) to Support Self-management of Symptoms and Functional Health: Evaluation of Hematological Patient Use of a Web-Based Patient Portal

Using the Computer-based Health Evaluation System (CHES) to Support Self-management of Symptoms and Functional Health: Evaluation of Hematological Patient Use of a Web-Based Patient Portal

Patient-Reported Outcomes, Health-Related Quality of Life, and Clinical Outcomes for Urothelial Cancer Patients Receiving Chemo- or Immunotherapy: A Real-Life Experience

Patient reported symptoms associated with quality of life during chemo‐ or immunotherapy for bladder cancer patients with advanced disease

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