scholarly journals Complementing clinical cancer registry data with patient reported outcomes: A feasibility study on routine electronic patient‐reported outcome assessment for the Austrian Myelome Registry

2019 ◽  
Vol 28 (6) ◽  
Author(s):  
Monika Sztankay ◽  
Lucia Neppl ◽  
Lisa M. Wintner ◽  
Fanny L. Loth ◽  
Wolfgang Willenbacher ◽  
...  
Keyword(s):  
Outcome Assessment ◽  
Feasibility Study ◽  
Cancer Registry ◽  
Patient Reported Outcomes ◽  
Patient Reported Outcome ◽  
Registry Data ◽  
Clinical Cancer Registry ◽  
Clinical Cancer ◽  
Cancer Registry Data ◽  
Patient Reported

scholarly journals Scope and heterogeneity of outcomes reported in randomized trials in patients receiving peritoneal dialysis

2020 ◽  
Author(s):  
Karine E Manera ◽  
David W Johnson ◽  
Yeoungjee Cho ◽  
Benedicte Sautenet ◽  
Jenny Shen ◽  
...  
Keyword(s):  
Peritoneal Dialysis ◽  
Patient Reported Outcomes ◽  
Randomized Trials ◽  
Primary Outcome ◽  
Median Number ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Inform Decision Making ◽  
Solute Clearance

Abstract Background Randomized trials can provide evidence to inform decision-making but this may be limited if the outcomes of importance to patients and clinicians are omitted or reported inconsistently. We aimed to assess the scope and heterogeneity of outcomes reported in trials in peritoneal dialysis (PD). Methods We searched the Cochrane Kidney and Transplant Specialized Register for randomized trials in PD. We extracted all reported outcome domains and measurements and analyzed their frequency and characteristics. Results From 128 reports of 120 included trials, 80 different outcome domains were reported. Overall, 39 (49%) domains were surrogate, 23 (29%) patient-reported and 18 (22%) clinical. The five most commonly reported domains were PD-related infection [59 (49%) trials], dialysis solute clearance [51 (42%)], kidney function [45 (38%)], protein metabolism [44 (37%)] and inflammatory markers/oxidative stress [42 (35%)]. Quality of life was reported infrequently (4% of trials). Only 14 (12%) trials included a patient-reported outcome as a primary outcome. The median number of outcome measures (defined as a different measurement, aggregation and metric) was 22 (interquartile range 13–37) per trial. PD-related infection was the most frequently reported clinical outcome as well as the most frequently stated primary outcome. A total of 383 different measures for infection were used, with 66 used more than once. Conclusions Trials in PD include important clinical outcomes such as infection, but these are measured and reported inconsistently. Patient-reported outcomes are infrequently reported and nearly half of the domains were surrogate. Standardized outcomes for PD trials are required to improve efficiency and relevance.

scholarly journals Strain Elastography and Tendon Response to an Exercise Program in Patients With Supraspinatus Tendinopathy: An Exploratory Study

2020 ◽  
Vol 8 (12) ◽  
pp. 232596712096518
Author(s):  
Karen Brage ◽  
Birgit Juul-Kristensen ◽  
John Hjarbaek ◽  
Eleanor Boyle ◽  
Per Kjaer ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Structural Changes ◽  
Supraspinatus Tendon ◽  
Patient Reported Outcome ◽  
Minimal Detectable Change ◽  
Detectable Change ◽  
Tendon Stiffness ◽  
Patient Reported ◽  
Tendon Thickness

Background: Shoulder pain is common, with a lifetime prevalence of up to 67%. Evidence is conflicting in relation to imaging findings and pain in the shoulder. Sonoelastography can be used to estimate tissue stiffness and may be a clinically relevant technique for diagnosing and monitoring tendon healing. Purpose: To evaluate changes in supraspinatus tendon stiffness using strain elastography (SEL) and associations with changes in patient-reported outcomes, supraspinatus tendon thickness, and grade of tendinopathy after 12 weeks of unilateral shoulder exercises in patients with supraspinatus tendinopathy. Study Design: Controlled laboratory study. Methods: A total of 23 patients with unilateral clinical supraspinatus tendinopathy performed 12 weeks of “standard care” exercises. At baseline and follow-up, supraspinatus tendon stiffness was measured bilaterally using SEL and compared with tendinopathy grading on magnetic resonance imaging scans and tendon thickness measured using conventional ultrasound. Patient-reported outcome measures included physical function and symptoms from the Disabilities of the Arm, Shoulder and Hand questionnaire and pain rating (visual analog scale). Results: No significant changes in SEL within or between groups (asymptomatic vs symptomatic tendon) were seen. All patient-reported outcomes showed significant improvement from baseline to follow-up, but with no change in tendinopathy grading and tendon thickness. No significant differences in the proportion of patients changing above the minimal detectable change in SEL and PROM were seen, except for discomfort while sleeping. Conclusion: Despite no significant within-group or between-group changes in SEL, significant improvements were found in patient-reported outcomes. An acceptable agreement between patients changing above the minimal detectable change in SEL and patient-reported outcome measure was seen. Further studies should explore the use of SEL to detect changes after tendon repair and long-term training potentially in subgroups of different tendinopathy phases. Clinical Relevance: In the short term, structural changes in supraspinatus tendons could not be visualized using SEL, indicating that a longer time span should be expected in order to observe structural changes, which should be considered before return to sports. Subgrouping based on stage of tendinopathy may also be important in order to evaluate changes over time with SEL among patients with supraspinatus tendinopathy. Registration: NCT03425357 ( ClinicalTrials.gov identifier).

scholarly journals German oncology certification system for colorectal cancer – relative survival rates of a single certified centre vs. national and international registry data

2021 ◽  
Vol 0 (0) ◽  
Author(s):  
Maximilian Richter ◽  
Lena Sonnow ◽  
Amir Mehdizadeh-Shrifi ◽  
Axel Richter ◽  
Rainer Koch ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Rectal Cancer ◽  
International Comparison ◽  
Cancer Registry ◽  
Survival Data ◽  
Survival Rates ◽  
Relative Survival ◽  
Registry Data ◽  
Cancer Registry Data ◽  
Colon And Rectal Cancer

Abstract Objectives To evaluate how the certification of specialised Oncology Centres in Germany affects the relative survival of patients with colorectal cancer (CRC) by means of national and international comparison. Methods Between 2007 and 2013, 675 patients with colorectal cancer, treated at the Hildesheim Hospital, an academic teaching hospital of the Hannover Medical School (MHH), were included. A follow-up of the entire patient group was performed until 2014. To obtain international data, a SEER-database search was done. The relative survival of 148,957 patients was compared to our data after 12, 36 and 60 months. For national survival data, we compared our rates with 41,988 patients of the Munich Cancer Registry (MCR). Results Relative survival at our institution tends to be higher in advanced tumour stages compared to national and international cancer registry data. Nationally we found only little variation in survival rates for low stages CRC (UICC I and II), colon, and rectal cancer. There were notable variations regarding relative survival rates for advanced CRC tumour stages (UICC IV). These variations were even more distinct for rectal cancer after 12, 36 and 60 months (Hildesheim Hospital: 89.9, 40.3, 30.1%; Munich Cancer Registry (MCR): 65.4, 28.7, 16.6%). The international comparison of CRC showed significantly higher relative survival rates for patients with advanced tumour stages after 12 months at our institution (77 vs. 54.9% for UICC IV; raw p<0.001). Conclusions Our findings suggest that patients with advanced tumour stages of CRC and especially rectal cancer benefit most from a multidisciplinary and guidelines-oriented treatment at Certified Oncology Centres. For a better evaluation of cancer treatment and improved national and international comparison, the creation of a centralised national cancer registry is necessary.

scholarly journals Acceptability of no-test medical abortion provided via telemedicine: analysis of patient-reported outcomes

2021 ◽  
pp. bmjsrh-2020-200954
Author(s):  
Chelsey Porter Erlank ◽  
Jonathan Lord ◽  
Kathryn Church
Keyword(s):  
Patient Reported Outcomes ◽  
Medical Abortion ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Post Procedure ◽  
High Satisfaction ◽  
First Choice ◽  
Patient Reported ◽  
At Home

IntroductionThe English government approved both stages of early medical abortion (EMA), using mifepristone and misoprostol under 10 weeks’ gestation, for at-home use on 30 March 2020. MSI Reproductive Choices UK (MSUK), one of the largest providers of abortion services in England, launched a no-test telemedicine EMA pathway on 6 April 2020. The objectives of this study were to report key patient-reported outcome measures and to assess whether our sample was representative of the whole population receiving no-test telemedicine EMA.MethodsA sample of all MSUK’s telemedicine EMA patients between April and August 2020 were invited to opt in to a follow-up call to answer clinical and satisfaction questions. A total of 1243 (13.7% of all telemedicine EMAs) were successfully followed-up, on average within 5 days post-procedure.ResultsPatients reported high confidence in telemedicine EMA and high satisfaction with the convenience, privacy and ease of managing their abortion at home. The sample responding were broadly equivalent to the whole population receiving telemedicine. No patient reported that they were unable to consult privately. The majority (1035, 83%) of patients reported preferring the telemedicine pathway, with 824 (66%) indicating that they would choose telemedicine again if COVID-19 were no longer an issue.ConclusionsTelemedicine EMA is a valued, private, convenient and more accessible option that is highly acceptable for patients seeking an abortion, especially those for whom in-clinic visits are logistically or emotionally challenging. Evidence that this pathway would be a first choice again in future for most patients supports the case to make telemedicine EMA permanent.

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