Review of response rates over time in registry-based studies using patient-reported outcome measures

Wang, Katherine; Eftang, C.N.; Jakobsen, Rune Bruhn; Årøen, Asbjørn

doi:10.1136/bmjopen-2019-030808

Cited by 52 publications

(48 citation statements)

References 33 publications

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“…The overall response rate in our series of patients was 99.5%. This value is extremely high, in particular when compared to other registry-based reports [24]. The reason for this unexpected response rate is due both to the short time period from a major surgery as well as to the activity of qualified dedicated personnel who directly contacted patients and checked the completion of the questionnaires.…”

Section: Discussionmentioning

confidence: 87%

Remote Management of Patients after Total Joint Arthroplasty via a Web-Based Registry during the COVID-19 Pandemic

et al. 2021

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Background: In 2020, due to the outbreak of the COVID-19 (Coronavirus Disease 2019) pandemic, patients who underwent total joint arthroplasty were not able to undergo the proper postoperative surgical and rehabilitative care. This study aims to evaluate the potential of a web-cloud-based database on patients’ follow-up in extraordinary situations, when a traditional in-person follow-up cannot be warranted. Methods: Patients who underwent joint arthroplasty at our Institute between 21 February and 16 March 2020 were included in the study group and were matched to a similar population undergoing joint arthroplasty in February/March 2019. All patients routinely complete questionnaires before and after treatment, including patient-reported outcome measures such as the Visual Analogues Scale (VAS), Knee/Hip Injury and Osteoarthritis Outcome Score Physical Function Short Form (KOOS-PS/HOOS-PS) and Short-Form Health Survey (SF-12) for the monitoring of clinical improvements. Results: 56 (study group) and 144 (control group) patients were included in the study. Both groups demonstrated significant improvements at 3 months. HOOS-PS improvement was significantly reduced in the 2020 group compared to 2019 (21.7 vs. 33.9, p < 0.001). This reduction was related to intense physical activities. Similarly, the functional score improvement related to these activities was reduced for patients undergoing knee replacement (8 vs. 10, p < 0.05). Conclusions: The web-based Institute Registry emerged as a meaningful and sensitive tool during an extraordinary situation such as the COVID-19 pandemic to monitor patients’ progression after total joint arthroplasties. Thanks to this tool, it was possible to observe that the prevention of usual postoperative care due to pandemic-related restrictions did not alter the benefits observed after joint replacement surgeries, even if this condition reduced the postoperative improvements in the most burdensome physical activities. A broader use of this kind of tool would improve and potentially reduce the burden and costs of postoperative patients’ monitoring in standard and extraordinary conditions. In addition, the systematic remote collection of data would allow for the identification of relevant differences in clinical outcomes in specific conditions or following the modification of treatment and rehabilitation protocols.

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Section: Discussionmentioning

confidence: 87%

Remote Management of Patients after Total Joint Arthroplasty via a Web-Based Registry during the COVID-19 Pandemic

et al. 2021

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“…Two main strategies can be employed to increase compliance in registries. 26 First, participants with a high risk of becoming nonresponders should be targeted in terms of information and follow-up. Second, returning the questionnaires should be as quick and easy as possible.…”

Section: Discussionmentioning

confidence: 99%

Differences in Baseline Characteristics and Outcome Among Responders, Late Responders, and Never-Responders After Anterior Cruciate Ligament Reconstruction

et al. 2021

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Background: Loss to follow-up in registry studies might affect generalizability and interpretation of results. Purpose: To evaluate the effect of nonresponder bias in our anterior cruciate ligament (ACL) registry. Study Design: Case-control study; Level of evidence, 3. Methods: A total of 2042 patients with ACL reconstruction in the Hospital for Special Surgery ACL Registry between 2009 and 2013 were included in the study. Patients who completed the patient-reported outcome measures at 2 or 5 years were considered responders (n = 808). Baseline data and patient characteristics were compared between responders and nonresponders (n = 1234). Both responders and nonresponders were contacted and invited to complete the International Knee Documentation Committee (IKDC) and Marx scores electronically and respond to questions regarding return to sports and subsequent surgeries. Nonresponders who completed the questionnaires after reminders were considered late responders. The remaining nonresponders were considered never-responders. The late responders (n = 367) completed the questionnaires after a mean follow-up of 7.8 years (range, 6.7-9.6 years), while follow-up for the responders was 6.8 years (range, 5.0-9.7 years). Responders and late responders were then compared in terms of differences in IKDC and Marx scores from baseline to final follow-up. Results: Nonresponders were younger (28.5 vs 31.5 years; P < .001) and more often male (60% vs 53%; P = .003) compared with responders. Responders had a higher level of education and were more likely to be White (79% vs 74%; P = .04). There were no substantial differences in patient characteristics or baseline IKDC and Marx scores between the late responders and never-responders. There were no statistically significant differences in patient-reported outcomes, return to sports, or subsequent surgeries between responders and late responders at a mean follow-up time of 8.8 years (range, 6.7-9.7 years). Repeat email reminders and telephone calls increased response rate by 18% (from 40% to 58%). Conclusion: There was no difference in clinical outcome as evaluated using IKDC and Marx scores between responders and late responders.

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“…When it comes to longitudinally monitoring PROs, the response rate also poses a challenge. Considerable variation and a downward trend in response rate for PROMs are often encountered in registry-based studies [ 61 ]. In the Dutch dialysis PROMs study, the response rate also varied greatly among the dialysis centres (ranging from 6 to 70%) and the response rate declined over time (28% at baseline compared with 21% at 3 and 6 months).…”

Section: Implementation Of Proms In Routine Carementioning

confidence: 99%

“…Previous studies suggest general measures to improve the response rate, including sending reminders to patients, providing PROMs in different formats (digital and paper versions) and languages and facilitating PROM completion during the hospital visit [ 61 , 65 ]. In the Dutch dialysis PROMs study, 41% of the responders received support to complete the PROMs (i.e.…”

Section: Implementation Of Proms In Routine Carementioning

confidence: 99%

Outcomes after kidney transplantation, let’s focus on the patients’ perspectives

Wang

Snoep

Hemmelder

et al. 2021

Clinical Kidney Journal

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Graft function and patient survival are traditionally the most used parameters to assess the objective benefits of kidney transplantation. Monitoring graft function, along with therapeutic drug concentrations and transplant complications, comprise the essence of outpatient management in kidney transplant recipients (KTRs). However, the patient’s perspective is not always included in this process. Patients’ perspectives on their health after kidney transplantation, albeit subjective, are increasingly acknowledged as valuable health care outcomes and should be considered in order to provide patient-centered health care. Such outcomes are known as patient-reported outcomes (PROs; for example, health-related quality of life and symptom burden) and are captured using patient-reported outcome measures (PROMs). So far, PROMs have not been routinely used in clinical care for KTRs. In this review, we will introduce PROMs and their potential application and value in the field of kidney transplantation, describe commonly used PROMs in KTRs, and discuss structural PROMs implementation into kidney transplantation care.

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Review of response rates over time in registry-based studies using patient-reported outcome measures

Cited by 52 publications

References 33 publications

Remote Management of Patients after Total Joint Arthroplasty via a Web-Based Registry during the COVID-19 Pandemic

Remote Management of Patients after Total Joint Arthroplasty via a Web-Based Registry during the COVID-19 Pandemic

Differences in Baseline Characteristics and Outcome Among Responders, Late Responders, and Never-Responders After Anterior Cruciate Ligament Reconstruction

Outcomes after kidney transplantation, let’s focus on the patients’ perspectives

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