Monitoring Validated Quality of Life Outcomes After Prostatectomy: Initial Description of Novel Online Questionnaire

Sebrow, Dov; Lavery, Hugh J.; Brajtbord, Jonathan S.; Hobbs, Adele R.; Levinson, Adam W.; Samadi, David B.

doi:10.1016/j.urology.2011.08.075

Cited by 8 publications

(6 citation statements)

References 28 publications

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“…Internet‐based questionnaires have been previously described for the collection of QOL data in patients, including those with prostate cancer and CRS . The shift to an online model for data collection has several apparent advantages.…”

Section: Discussionmentioning

confidence: 99%

A new model for collection of clinical outcomes data in patients with chronic rhinosinusitis

Meier

Remenschneider

D'Amico

et al. 2014

Int Forum Allergy Rhinol

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Quality of life data can be effectively collected from CRS patients in both the private and academic practice setting. The addition of an online data collection tool can significantly increase response rates, and allow a comprehensive capture of meaningful clinical outcomes. Such a model is not difficult to implement and has increasing relevance as payers begin to request outcome data from providers.

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Section: Discussionmentioning

confidence: 99%

A new model for collection of clinical outcomes data in patients with chronic rhinosinusitis

Meier

Remenschneider

D'Amico

et al. 2014

Int Forum Allergy Rhinol

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“…Use of electronic PROs early in the patient pathway in cancer outpatient consultations has been shown to be feasible, acceptable, and beneficial for patients [17-21]. Online systems have also been used, with some success, for remote monitoring of patients on follow-up [22]. Web-based PROs systems linked to EHRs/cancer registries that patients consent to join close to diagnosis in the clinical setting, potentially offer a sustainable and scalable way forward for routinely collecting and linking PROs with medical data over time.…”

Section: Introductionmentioning

confidence: 99%

Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

Ashley¹,

Jones²,

Thomas³

et al. 2013

J Med Internet Res

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BackgroundRoutine measurement of Patient Reported Outcomes (PROs) linked with clinical data across the patient pathway is increasingly important for informing future care planning. The innovative electronic Patient-reported Outcomes from Cancer Survivors (ePOCS) system was developed to integrate PROs, collected online at specified post-diagnostic time-points, with clinical and treatment data in cancer registries.ObjectiveThis study tested the technical and clinical feasibility of ePOCS by running the system with a sample of potentially curable breast, colorectal, and prostate cancer patients in their first 15 months post diagnosis.MethodsPatients completed questionnaires comprising multiple Patient Reported Outcome Measures (PROMs) via ePOCS within 6 months (T1), and at 9 (T2) and 15 (T3) months, post diagnosis. Feasibility outcomes included system informatics performance, patient recruitment, retention, representativeness and questionnaire completion (response rate), patient feedback, and administration burden involved in running the system.ResultsePOCS ran efficiently with few technical problems. Patient participation was 55.21% (636/1152) overall, although varied by approach mode, and was considerably higher among patients approached face-to-face (61.4%, 490/798) than by telephone (48.8%, 21/43) or letter (41.0%, 125/305). Older and less affluent patients were less likely to join (both P<.001). Most non-consenters (71.1%, 234/329) cited information technology reasons (ie, difficulty using a computer). Questionnaires were fully or partially completed by 85.1% (541/636) of invited participants at T1 (80 questions total), 70.0% (442/631) at T2 (102-108 questions), and 66.3% (414/624) at T3 (148-154 questions), and fully completed at all three time-points by 57.6% (344/597) of participants. Reminders (mainly via email) effectively prompted responses. The PROs were successfully linked with cancer registry data for 100% of patients (N=636). Participant feedback was encouraging and positive, with most patients reporting that they found ePOCS easy to use and that, if asked, they would continue using the system long-term (86.2%, 361/419). ePOCS was not administratively burdensome to run day-to-day, and patient-initiated inquiries averaged just 11 inquiries per month.ConclusionsThe informatics underlying the ePOCS system demonstrated successful proof-of-concept – the system successfully linked PROs with registry data for 100% of the patients. The majority of patients were keen to engage. Participation rates are likely to improve as the Internet becomes more universally adopted. ePOCS can help overcome the challenges of routinely collecting PROs and linking with clinical data, which is integral for treatment and supportive care planning and for targeting service provision.

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“…Previous studies including patients with prostate and other cancers have indicated that it may be feasible to use Web-based technologies as a means of collecting PROs and follow-up [ 9 - 11 ]. Vickers and colleagues [ 10 ] reported a 39% participation rate for all eligible postprostatectomy patients (age range 57-65 years).…”

Section: Discussionmentioning

confidence: 99%

“…Vickers and colleagues [ 10 ] reported a 39% participation rate for all eligible postprostatectomy patients (age range 57-65 years). Sebrow et al [ 9 ] demonstrated a 50% participation rate in prostatectomy patients (age range 38-77 years). The latter group suggested that these types of systems could be useful for collection of post-treatment QOL, especially from those patients who may not otherwise attend follow-up due lack of geographic proximity to a treatment facility.…”

Section: Discussionmentioning

confidence: 99%

An Internet-Based Means of Monitoring Quality of Life in Post-Prostate Radiation Treatment: A Prospective Cohort Study

Parker¹,

Rajapakshe²,

Moldovan³

et al. 2015

JMIR Res Protoc

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BackgroundWidespread integration of the Internet has resulted in an increase in the feasibility of using Web-based technologies as a means of communicating with patients. It may be possible to develop secure and standardized systems that facilitate Internet-based patient-reported outcomes which could be used to improve patient care.ObjectiveThis study investigates patient interest in participating in an online post-treatment disease outcomes and quality of life monitoring program developed specifically for patients who have received radiation treatment for prostate cancer at a regional oncology center.MethodsPatients treated for prostate cancer between 2007 and 2011 (N=1113) at the British Columbia Cancer Agency, Centre for the Southern Interior were invited by mail to participate in a standardized questionnaire related to their post-treatment health. Overall participation rates were calculated. In addition, demographics, access to broadband Internet services, and treatment modalities were compared between participants and nonparticipants.ResultsOf the 1030 eligible invitees, 358 (358/1030, 34.7%) completed the online questionnaire. Participation rates were higher in individuals younger than age 60 when compared to those age 60 or older (42% vs 31%) and also for those living in urban areas compared with rural (37% vs 29%) and in those who received brachytherapy versus external beam radiotherapy (EBRT) (41% vs 31%). Better participation rates were seen in individuals who had access to Internet connectivity based on the different types of broadband services (DSL 35% for those with DSL connectivity vs 29% for those without DSL connectivity; cable 35% vs 32%; wireless 38% vs 26%). After adjusting for age, the model indicates that lack of access to wireless broadband connectivity, living in a rural area, and receiving EBRT were significant predictors of lower participation.ConclusionsThis study demonstrates that participation rates vary in patient populations within the interior region of British Columbia, especially with older patients, those in rural areas, and those with limited access to quality Internet services.

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Monitoring Validated Quality of Life Outcomes After Prostatectomy: Initial Description of Novel Online Questionnaire

Cited by 8 publications

References 28 publications

A new model for collection of clinical outcomes data in patients with chronic rhinosinusitis

A new model for collection of clinical outcomes data in patients with chronic rhinosinusitis

Integrating Patient Reported Outcomes With Clinical Cancer Registry Data: A Feasibility Study of the Electronic Patient-Reported Outcomes From Cancer Survivors (ePOCS) System

An Internet-Based Means of Monitoring Quality of Life in Post-Prostate Radiation Treatment: A Prospective Cohort Study

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