Real-world use of epic for clinical practice (EPIC-CP) to assess patient-reported prostate cancer quality of life in the clinical setting.

2015 ◽  
Vol 33 (7_suppl) ◽  
pp. 18-18 ◽  
Author(s):  
Peter Chang ◽  
Arie Carneiro ◽  
Ostap Dovirak ◽  
Kimberly Taylor ◽  
Catrina Crociani ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Clinical Practice ◽  
Clinical Care ◽  
Post Treatment ◽  
Rank Test ◽  
Routine Clinical Care ◽  
Patient Reported ◽  
Domain Scores

18 Background: Prostate cancer practitioners tend to underestimate patients’ treatment-related side effects. We developed the Expanded Prostate Cancer Index Composite for Clinical Practice (EPIC-CP) to facilitate patient-reported health-related quality of life (HRQOL) assessment at the point-of-care (Chang P et al, J Urol Sep 2011). We sought to demonstrate the feasibility of EPIC-CP use in routine clinical care, and to compare longitudinal patient-reported and practitioner-reported prostate cancer outcomes. Methods: We reviewed practitioner- and patient-reported HRQOL outcomes in 482 patients who underwent radical prostatectomy at our institution from 2010 to 2014. All EPIC-CP questionnaires were administered and interpreted without research personnel. Practitioner-reported outcomes were assessed using chart review. We used the paired t-test and Wilcoxon signed-rank test to compare pre- and post-treatment EPIC-CP domain scores, and Fisher’s exact test to compare patient-reported and practitioner-reported outcomes. We considered p-values < 0.05 statistically significant. Results: 708 total EPIC-CP questionnaires were completed. Mean urinary incontinence domain scores increased (worsened) significantly from baseline (0.6±0.2) to 3 (3.1±2.3) and 6 months (2.2±2.1) post-treatment, but were not statistically changed from baseline at 12 months (1.6±1.7). Patient-reported incontinence pad-free rates using EPIC-CP at 3, 6, and 12 months were 47%, 76%, and 78%, respectively, which were consistent with practitioner-reported rates. Mean sexual domain scores were significantly worse at 12 months (5.9±3.3) compared to baseline (2.4±2.8). Practitioners significantly overestimated the rate of functional erections compared to patients’ EPIC-CP-reported rates at 3 months (18% vs 12%, p < 0.05) and 12 months (45% vs 23%, p < 0.05). Bowel and vitality/hormonal scores were unchanged, and urinary irritation/obstruction scores improved after surgery. Conclusions: EPIC-CP is feasible to use in the routine clinical care of prostate cancer patients, and can help practitioners more accurately assess patients’ post-treatment symptom severity.

Evaluating the correlation between early and late quality-of-life declines using the Expanded Prostate Cancer Index Composite for Clinical Practice (EPIC-CP) after definitive stereotactic body radiotherapy, intensity-modulated radiotherapy, or brachytherapy for prostate cancer.

2021 ◽  
Vol 39 (6_suppl) ◽  
pp. 214-214
Author(s):  
Jacob Samuel Parzen ◽  
Thomas J Quinn ◽  
Andrew B Thompson ◽  
Peter Chang ◽  
Sean P. Collins ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Clinical Practice ◽  
Patient Reported Outcomes ◽  
Univariate Analysis ◽  
Intensity Modulated Radiotherapy ◽  
Late Toxicity ◽  
Intensity Modulated ◽  
Patient Reported

214 Background: Multiple authorities including an NCI Taskforce have recommended routine evaluation of patient reported outcomes (PRO) in cancer care. The Expanded Prostate Cancer Index Composite for Clinical Practice (EPIC-CP) is a single-page quality-of-life (QOL) tool which is easily integrated into routine clinical practice. The EPIC-CP has 5 domains (each scored 0-12). The present study evaluated whether early clinically significant changes in EPIC-CP were correlated with later changes in patients undergoing definitive radiotherapy (RT) for prostate cancer. Methods: A cohort of 979 patients including the PROSTQA study and 3 other institutions with prospective QOL data pooled for analysis were evaluated for patient-reported outcomes. Patients were treated with definitive low-dose rate brachytherapy (n=284), intensity-modulated RT (n=251), or stereotactic body RT (n=444). EPIC-CP scores were derived based upon responses to the EPIC-26. Data were evaluated using minimal clinically important difference (MCID) thresholds to compare QOL at 1-2 months and 24 months from baseline. Univariate analysis was used to assess the correlation between early and late MCID changes. Results: On univariate analysis, early ≥1 MCID change from baseline was strongly associated with a late ≥1 MCID across all 5 domains (urinary incontinence, urinary irritation/obstruction, bowel, sexual, and vitality/hormonal) within EPIC-CP and for the overall EPIC-CP score (Table). When MCID was instead defined as 1 or 3, early toxicity remained predictive of late toxicity for all domains and the overall EPIC-CP score. Conclusions: The EPIC-CP is an easy-to-use QOL assessment with clinically relevant outcomes. Early QOL decline was strongly associated with late QOL decline in patients undergoing definitive RT for prostate cancer across all EPIC-CP domains. Patients with early QOL decline may be candidates for early QOL-based interventions to alleviate their late toxicity burden from treatment. [Table: see text]

scholarly journals POS1055 HIGH SATISFACTION WITH USTEKINUMAB TREATMENT IN PATIENTS WITH ACTIVE PSORIATIC ARTHRITIS – FINAL RESULTS OF THE NON-INTERVENTIONAL STUDY SUSTAIN DEMONSTRATE EARLY AND LONG-TERM TREATMENT RESPONSE AND HIGH TOLERABILITY

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 806.1-806
Author(s):  
J. Wendler ◽  
E. Movshovich ◽  
N. Damann ◽  
F. Hamann ◽  
P. Wagener ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psoriatic Arthritis ◽  
Clinical Care ◽  
Interventional Study ◽  
Routine Clinical Care ◽  
Number Of Patients ◽  
Patient Reported ◽  
Final Data

Background:From February 2015 to April 2020, patients with active psoriatic arthritis under treatment with ustekinumab in routine clinical care in Germany were included into the prospective, multi-center non-interventional study SUSTAIN.Objectives:Here, we present final data from SUSTAIN including final week 160 on long term efficacy and safety of ustekinumab treatment, quality of life and further patient reported outcomes.Methods:In SUSTAIN, 337 patients were treated with ustekinumab according to routine clinical care at 75 centers for 160 weeks with documentation intervals at week 0 and 4 and then every 12 weeks. The collected data included demographics, number of swollen and tender joints, tender entheses, amount of skin symptoms (BSA and PASI), patient reported outcome concerning disease activity and pain, Health Assessment Questionnaire (HAQ), quality of life (SF-12), sleep quality (VAS), satisfaction with therapy of patient and physician, safety (adverse events [AE]/serious adverse events [SAE]), pharmacoeconomic aspects, number of patients with „Minimal Disease Activity“ (MDA) and number of patients with MDA at week 28 und 52. For this analysis, final data of all 337 patients of all documented visits were analyzed.Results:The visit at week 4 was documented for 31 patients, at week 28 for 282, at week 52 for 216, and at week 160 for 129 of the 337 patients. At baseline, the patients had a mean age of 53.6 years (22-85) and 192 (57%) were female. The patients’ mean BMI was 29.6 kg/m2 (18.6-52). 54.3 % of the patients had at least one TNF inhibitor as prior medication. 54.1 % of the patients used MTX as concomitant medication. At time of inclusion, 73.3% of the patients showed arthritis at small and 52.2% at large joints. 16.9% showed spinal involvement and 13.1% enthesitis. In the course of the treatment, the number of tender joints improved from a mean of 10.0 (CI 95% 8.6/11.3) at baseline to 4.1 (3.2/4.9) at week 28, 3.6 (2.7/4.6) at week 52 and 1.0 (0.6/1.4) at week 160. Number of swollen joints improved from 4.1 (3.4/4.9) at baseline to 1.8 (1.2/2.3) at week 28, to 1.3 (0.8/1.8) at week 52 and to 0.4 (0.2/0.6) at week 160. BSA declined from a mean of 15.6% (rage from 0 to 80.0%) at baseline to 5.2% (0 to 60%) at week 28, to 3.0% (0 to 45.0%) at week 52 and to 1.7 (0 to 35%) at week 160. PASI declined from a mean of 7.3 (range from 0 to 43.0) at baseline to 1.7 (0 to 24.8) at week 28, to 1.3 (o to 28.5) at week 52 and to 0.5 (0 to 3.2) at week 160. Efficacy of the therapy with ustekinumab was assessed as “very good” or “good” by 85.3% of the treating physicians at week 52 and by 94.1% at week 160. The patients assessed the efficacy as “very good” or “good” by 82.8% at week 52 and by 89.8% at week 160. At the end of the study, 96 SAEs have been documented, of which only 16 were related to ustekinumab. All in all, safety of therapy with ustekinumab was assessed as “very good” or “good” by 99% of the treating physicians after 52 weeks and by 99.2 % after 160 weeks. The patients assessed the safety as “very good” or “good” by 97.5% at week 52 and by 100% at week 160.Conclusion:The non-interventional study SUSTAIN showed relevant disease improvements and good safety with an outstanding high therapy satisfaction in patients with active psoriatic arthritis treated with ustekinumab. Treatment effect was observed as early as after 4 weeks. The treatment effects and satisfaction sustained up end of documentation at week 160 in daily practice life.Disclosure of Interests:None declared.

MP83-19 REAL-WORLD USE OF EPIC FOR CLINICAL PRACTICE (EPIC-CP) TO ASSESS PATIENT-REPORTED PROSTATE CANCER QUALITY-OF-LIFE IN THE CLINICAL SETTING

2015 ◽  
Vol 193 (4S) ◽  
Author(s):  
Peter Chang ◽  
Arie Carneiro ◽  
Ostap Dovirak ◽  
Kimberly Taylor ◽  
Catrina Crociani ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Clinical Practice ◽  
Real World ◽  
Clinical Setting ◽  
Patient Reported

scholarly journals Does the Patient-Reported Apnea Questionnaire (PRAQ) increase patient-centredness in the daily practice of sleep centres? a mixed-methods study

BMJ Open ◽  
2019 ◽  
Vol 9 (6) ◽  
pp. e025963
Author(s):  
Inger L Abma ◽  
Maroeska M Rovers ◽  
Marijke IJff ◽  
Bernard Hol ◽  
Masha Nägele ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Mixed Methods ◽  
Clinical Care ◽  
Healthcare Providers ◽  
Obstructive Sleep ◽  
Number Of Patients ◽  
Patient Reported ◽  
Patient Centredness

ObjectivesThe objective of this exploratory study was to see how the Patient-Reported Apnea Questionnaire (PRAQ) may impact the daily clinical practice of sleep centres, and why it may or may not work as expected. The hypotheses were tested that this patient-reported outcome measure makes patients more aware of which of their health complaints may be related to obstructive sleep apnoea (OSA), and that it improves patient-centredness of care by shifting the focus of care away from (only) medical problems towards the individual burden of disease and quality of life.DesignMixed methods. The quantitative study (surveys, patient records) was a before-and-after study.SettingThree sleep centres in The Netherlands (secondary care).Participants27 patients and 14 healthcare professionals were interviewed. 487 patients completed surveys pre-implementation, and 377 patients completed surveys post-implementation of the PRAQ. For the health records, 125 patients were included in the pre-implementation group, and 124 other patients in the post-implementation group.InterventionsThe PRAQ was used in clinical practice for six successive months.Outcome measuresScores on individual survey items, number of patients receiving non-medical treatment, adjustment of treatment at first follow-up, compliance with treatment.ResultsPatients were generally positive about the usefulness of the PRAQ before and during the consultation, as they felt more informed. Healthcare providers did not consider the PRAQ very useful, and they reported minor impact on their consultations. The surveys and health record study did not show an impact of the PRAQ on clinical practice.ConclusionsImplementing the PRAQ may be beneficial to patients, but this study does not show much impact with regard to patient-centredness of care. New Dutch guidelines for OSA care may lead to a greater emphasis on quality of life and value of care for patients, making its integration in clinical care potentially more useful.

Quality of Life for Children with Persistent Sinonasal Symptoms

2003 ◽  
Vol 128 (1) ◽  
pp. 17-26 ◽  
Author(s):  
David J. Kay ◽  
Richard M. Rosenfeld
Keyword(s):  
Quality Of Life ◽  
Clinical Care ◽  
Longitudinal Change ◽  
Good Test ◽  
Routine Clinical Care ◽  
Before And After ◽  
The Mean ◽  
The Individual ◽  
Sinonasal Symptoms

OBJECTIVE: The goal was to validate the SN-5 survey as a measure of longitudinal change in health-related quality of life (HRQoL) for children with persistent sinonasal symptoms. DESIGN AND SETTING: We conducted a before and after study of 85 children aged 2 to 12 years in a metropolitan pediatric otolaryngology practice. Caregivers completed the SN-5 survey at entry and at least 4 weeks later. The survey included 5 symptom-cluster items covering the domains of sinus infection, nasal obstruction, allergy symptoms, emotional distress, and activity limitations. RESULTS: Good test-retest reliability ( R = 0.70) was obtained for the overall SN-5 score and the individual survey items ( R ≥ 0.58). The mean baseline SN-5 score was 3.8 (SD, 1.0) of a maximum of 7.0, with higher scores indicating poorer HRQoL. All SN-5 items had adequate correlation ( R ≥ 0.36) with external constructs. The mean change in SN-5 score after routine clinical care was 0.88 (SD, 1.19) with an effect size of 0.74 indicating good responsiveness to longitudinal change. The change scores correlated appropriately with changes in related external constructs ( R ≥ 0.42). CONCLUSIONS: The SN-5 is a valid, reliable, and responsive measure of HRQoL for children with persistent sinonasal symptoms, suitable for use in outcomes studies and routine clinical care.

scholarly journals Quality of life assessments in clinical practice using either the EORTC-QLQ-C30 or the SEIOQL-DW: a randomized study

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Åsa Kettis ◽  
Hanna Fagerlind ◽  
Jan-Erik Frödin ◽  
Bengt Glimelius ◽  
Lena Ring
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Significant Difference ◽  
Patient Reported ◽  
Health Related Qol ◽  
Health Related ◽  
Secondary Outcomes ◽  
The Impact ◽  
Over Time

Abstract Background Effective patient-physician communication can improve patient understanding, agreement on treatment and adherence. This may, in turn, impact on clinical outcomes and patient quality of life (QoL). One way to improve communication is by using patient-reported outcome measures (PROMs). Heretofore, studies of the impact of using PROMs in clinical practice have mostly evaluated the use of standardized PROMs. However, there is reason to believe that individualized instruments may be more appropriate for this purpose. The aim of this study is to compare the effectiveness of the standardized QoL-instrument, the European Organization for Research and Treatment of Cancer Quality of Life C-30 (EORTC-QOL-C30) and the individualized QoL instrument, the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), in clinical practice. Methods In a prospective, open-label, controlled intervention study at two hospital out-patient clinics, 390 patients with gastrointestinal cancer were randomly assigned either to complete the EORTC-QOL-C30 or the SEIQoL-DW immediately before the consultation, with their responses being shared with their physician. This was repeated in 3–5 consultations over a period of 4–6 months. The primary outcome measure was patients’ health-related QoL, as measured by FACIT-G. Patients’ satisfaction with the consultation and survival were secondary outcomes. Results There was no significant difference between the groups with regard to study outcomes. Neither intervention instrument resulted in any significant changes in health-related QoL, or in any of the secondary outcomes, over time. This may reflect either a genuine lack of effect or sub-optimization of the intervention. Since there was no comparison to standard care an effect in terms of lack of deterioration over time cannot be excluded. Conclusions Future studies should focus on the implementation process, including the training of physicians to use the instruments and their motivation for doing so. The effects of situational use of standardized or individualized instruments should also be explored. The effectiveness of the different approaches may depend on contextual factors including physician and patient preferences.

Sign in / Sign up

Export Citation Format

Share Document