scholarly journals POS1461-HPR THE DEVELOPMENT OF A NOVEL EPRO DELIVERY SYSTEM TO MEASURE PATIENT QUALITY OF LIFE IN ROUTINE CLINICAL CARE: AN ANALYSIS OF 5 YEARS OF EXPERIENCE

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1015.2-1016
Author(s):  
K. Tymms ◽  
T. Smith ◽  
C. Deakin ◽  
T. Freeman ◽  
D. Hoffman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Medical Record ◽  
Delivery System ◽  
Real World ◽  
Burden Of Disease ◽  
Clinical Care ◽  
Routine Clinical Care ◽  
Clinical Consultation ◽  
The Impact

Background:Registry studies and clinical trials are increasingly incorporating patient reported outcomes (PROs) to measure the full burden of disease and better measure the efficacy and value of medicines; however, the burden of paper-based surveys, time constraints, and privacy concerns impede the widespread use of PROs in routine clinical care.Objectives:To develop a simple and secure technological solution to incorporate validated PROs into routine clinical care for patients with rheumatic diseases, and to assess the patient response to functional assessment of chronic illness therapy fatigue (FACIT-F), patient health questionnaire-2 (PHQ-2), and healthcare resource utilization (HCRU) questionnaires delivered using this ePRO method.Methods:A novel ePRO questionnaire delivery system was developed by Software4Specialists in partnership with OPAL Rheumatology. Validated PRO questionnaires were sent from the patient’s electronic medical record (Audit4, Software4Specialists) and delivered to the patient’s email address at time intervals specified by the rheumatologist (defaults to quarterly) or completed in the clinic waiting room prior to the consultation using a tablet or the patient’s smart phone (in-practice). Completed questionnaires were encrypted and returned directly to the patient’s Audit4 electronic medical record held on the clinician’s server for review at the next clinical consultation. The link to the PRO questionnaire expired within 28 days if the questionnaire was not completed, and the questionnaires were automatically cancelled if 2 consecutive links expired. This technology was made available to up to 111 rheumatologists located in 42 clinics in 6 states/territories in Australia, and the use of this technology to furnish the clinical consultation was voluntary for clinicians and patients. Deidentified clinical data was extracted from the servers of participating rheumatologists and aggregated across all sites.1 Data collected between April 2016-Dec 2020 was analysed descriptively.Results:Between April 2016-Dec 2020, 99,505 FACIT-F, PHQ-2 and HCRU questionnaires have been delivered to 5,784 patients from 39 of 42 contributing clinics (93%). 85% of questionnaires were delivered via email and 15% in-practice. Overall, 85% of patients completed at least one questionnaire, and of all questionnaires sent, 73% were completed. These rates have remained consistent over time. The completion rates were higher when questionnaires were delivered to patients in-practice compared to email (96% vs 69%). Females were more likely to engage with the questionnaires than males (87% vs 81%), and older patients were slightly more likely to complete all questionnaires delivered. 69% of questionnaires sent via email were completed on the day they were delivered and 94% were completed within 7 days. The median (IQR) number of questionnaires completed per patient was 3 (1,7) and the median (IQR) time since the first questionnaire was completed was 13 months (5,26).Conclusion:The novel Audit4 ePRO delivery system is an effective tool for incorporating PROs into routine clinical care to capture data directly from the patient on the impact of their condition on their quality of life. The data generated provides a unique opportunity to understand the full burden of disease for patients in the real-world setting and the impact of interventions.References:[1]Littlejohn GO, Tymms KE, Smith T, Griffiths HT. Using big data from real-world Australian rheumatology encounters to enhance clinical care and research. Clin Exp Rheum 2020:38(5): 874 -880.Acknowledgements:The authors acknowledge the members of OPAL Rheumatology Ltd and their patients for providing clinical data for this study, and Software4Specialists Pty Ltd for providing the Audit4 platform.Disclosure of Interests:Kathleen Tymms: None declared, Tegan Smith: None declared, Claire Deakin: None declared, Tim Freeman: None declared, David Hoffman: None declared, Dana Segelov: None declared, Hedley Griffiths Consultant of: AbbVie, Gilead, Novartis and Lilly., Sabina Ciciriello: None declared, Peter Youssef: None declared, David Mathers: None declared, Catherine OSullivan: None declared, Geoff Littlejohn Consultant of: Over the last 5 years Geoffrey Littlejohn has received educational grants and consulting fees from AbbVie, Bristol Myers Squibb, Eli Lilly, Gilead, Novartis, Pfizer, Janssen, Sandoz, Sanofi and Seqirus

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 OP0277-PARE METABERN, THE EUROPEAN REFERENCE NETWORK FOR RARE HEREDITARY DISEASES: STRUCTURE, OBJECTIVES, METABOLIC RMDS AND THE ROLES OF EUROPEAN PATIENT ADVOCACY GROUPS (EPAGS)

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 168.2-168
Author(s):  
L. Wagner ◽  
S. Sestini ◽  
C. Brown ◽  
A. Finglas ◽  
R. Francisco ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Social Science ◽  
Metabolic Pathways ◽  
Metabolic Disorders ◽  
Clinical Care ◽  
Single Point ◽  
Link Type ◽  
The Impact

Background:Inborn metabolic disorders (IMDs) currently encompass more than 1,500 diseases with new ones still to be identified1. Each of them is characterised by a genetic defect affecting a metabolic pathway. Only few of them have curative treatments, that target the respective metabolic pathway. Commonly, treatment examples include diet, substrate reduction therapies, enzyme replacement therapies, gene therapy and biologicals, enabling IMD-patient now to survive to adulthood. About 30 % of all IMDs involve the musculoskeletal system and are here referred to as rare metabolic RMDs. Generally, IMDs are very heterogenous with respect to symptoms and severity, often being systemic and affecting more children than adults. Thus, challenges include certified advanced training of adult metabolic experts, standardised transition plans, social support and development of therapies for diseases that do not have any cure yet.Objectives:Introduction of MetabERN, its structure and objectives, highlighting on the unique features and challenges of metabolic RMDs and describing the involvement of patient representation in MetabERN.Methods:MetabERN is stratified in 7 subnetworks (SNW) according to the respective metabolic pathways and 9 work packages (WP), including administration, dissemination, guidelines, virtual counselling framework, research/clinical trials, continuity of care, education and patient involvement. The patient board involves a steering committee and single point of contacts for each subnetwork and work package, respectively2. Projects include identifying the need of implementing social science to assess the psycho-socio-economic burden of IMDs, webinars on IMDs and their transition as well as surveys on the impact of COVID-193 on IMD-patients and health care providers (HCPs), social assistance for IMD-patients and analysing the transition landscape within Europe.Results:The MetabERN structure enables bundling of expertise, capacity building and knowledge transfer for faster diagnosis and better health care. Rare metabolic RMDs are present in all SNWs that require unique treatments according to their metabolic pathways. Implementation of social science to assess the psycho-socio-economic burden of IMDs is still underused. Involvement of patient representatives is essential for a holistic healthcare not only focusing on clinical care, but also on the quality of life for IMD-patients. Surveys identified unmet needs of patient care, patients having little information on national support systems and structural deficits of healthcare systems to ensure HCP can provide adequate clinical care during transition phases. These results are collected by MetabERN and forwarded to the Directorate-General for Health and Food Safety (DG SANTE) of the European Commission (EC) to be addressed further.Conclusion:MetabERN offers an infrastructure of virtual healthcare for patients with IMDs. Thus, in collaboration with ERN ReCONNET, MetabERN can assist in identifying rare metabolic disorders of RMDs to shorten the odyssey of diagnosis and advise on their respective therapies. On the other hand, MetabERN can benefit from EULAR’s longstanding experience regarding issues affecting the quality of life, all RMD patients are facing, such as pain, stiffness, fatigue, rehabilitation, maintaining work and disability claims.References:[1]IEMbase - Inborn Errors of Metabolism Knowledgebase http://www.iembase.org/ (accessed Jan 29, 2021).[2]MetabERN: European Refence Network for Hereditary Metabolic Disorders https://metab.ern-net.eu/ (accessed Jan 29, 2021).[3]Lampe, C.; Dionisi-Vici, C.; Bellettato, C. M.; Paneghetti, L.; van Lingen, C.; Bond, S.; Brown, C.; Finglas, A.; Francisco, R.; Sestini, S.; Heard, J. M.; Scarpa, M.; MetabERN collaboration group. The Impact of COVID-19 on Rare Metabolic Patients and Healthcare Providers: Results from Two MetabERN Surveys. Orphanet J. Rare Dis.2020, 15 (1), 341. https://doi.org/10.1186/s13023-020-01619-x.Acknowledgements:The authors thank the MetabERN collaboration group, the single point of contacts (SPOC) of the MetabERN patient board and the Transition Project Working Group (TPWG)Disclosure of Interests:None declared

Health-related quality of life measures in routine clinical care: Can FACT-Fatigue help to assess the management of fatigue in cancer patients?

2009 ◽  
Vol 25 (01) ◽  
pp. 90-96 ◽  
Author(s):  
Maria-Jose Santana ◽  
Heather-Jane Au ◽  
Melina Dharma-Wardene ◽  
Joanne D. Hewitt ◽  
David Dupere ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Clinical Care ◽  
Health Related Quality ◽  
Routine Clinical Care ◽  
Study Results ◽  
Related Quality ◽  
Health Related

Objectives:Fatigue is the most common symptom reported by cancer patients. The inclusion of health-related quality of life (HRQL) measures in routine clinical care of cancer patients may improve the management of fatigue. The primary objective of this study is to provide evidence on the magnitude of change in fatigue subscale scores using the Functional Assessment of Cancer Therapy-Fatigue (FACT-F) that is clinically important.Methods:Consecutive patients with advanced primary lung cancer attending a Canadian tertiary care cancer and, prior to undergoing palliative chemotherapy, were enrolled in the study. Patients completed a battery of questionnaires [FACT-F, Qualitative Patients Self-report of Fatigue Level (QPSRF)] at baseline, follow-up and 2 weeks after their final cycle of chemotherapy. Clinicians assessed the patients using the Eastern Cooperative Oncology Group (ECOG) Performance Status Scale at baseline and each follow-up visit. FACT-F change scores were computed as the mean change in score (end of study score minus baseline score).Results:A total of 43 patients with mean age of 59 years were enrolled in the study. Results revealed a mean change in FACT-F subscale score of 5.0 (SE 1.06) for those who rated themselves as more tired, 1.28 (SE 1.00) for those who rated themselves as the same (no change), and −1.52 (SE 0.84) for those patients who rated themselves as less tired.Conclusions:We provide evidence on the magnitude of change in FACT-F score that is associated with the perception by patients of improvement in fatigue and magnitude of change in score that is associated with worsening in fatigue.

Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients

2010 ◽  
Vol 19 (3) ◽  
pp. 371-379 ◽  
Author(s):  
Maria-Jose Santana ◽  
David Feeny ◽  
Jeffrey A. Johnson ◽  
Finlay A. McAlister ◽  
Daniel Kim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lung Transplant ◽  
Clinical Care ◽  
Health Related Quality ◽  
Routine Clinical Care ◽  
Transplant Patients ◽  
Quality Of Life Measures ◽  
Related Quality ◽  
Health Related

scholarly journals Impact of superimposed nephrological care to guidelines-directed management by primary care physicians of patients with chronic kidney disease: a randomized controlled trial

2019 ◽  
Author(s):  
Patrick Saudan ◽  
Belen Ponte ◽  
Nicola Marangon ◽  
Chantal Martinez ◽  
Lena Berchtold ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Primary Care Physicians ◽  
Clinical Care ◽  
Randomised Trial ◽  
Dialysis Initiation ◽  
The Impact

Abstract Background: Optimal clinical care of patients with chronic kidney disease (CKD) requires collaboration between primary care physicians (PCP) and nephrologists. We undertook a randomised trial to determine the impact of superimposed nephrologist care compared to guidelines-directed management by PCPs in CKD patients after hospital discharge. Methods: Stage 3b-4 CKD patients were enrolled during a hospitalization and randomised in two arms: Co-management by PCPs and nephrologists (interventional arm) versus management by PCPs with written instructions and consultations by nephrologists on demand (standard care). Our primary outcome was death or rehospitalisation within the 2 years post-randomisation. Secondary outcomes were: urgent renal replacement therapy (RRT), decline of renal function and decrease of quality of life at 2 years. Results: From November 2009 to the end of June 2013, we randomised 242 patients. Mean follow-up was 51 + 20 months. Survival without rehospitalisation, GFR decline and elective dialysis initiation did not differ between the two arms. Quality of life was also similar in both groups . Compared to randomised patients, those who either declined to participate in the study or were previously known by nephrologists had a worse survival. Conclusion: These results do not demonstrate a benefit of a regular renal care compared to guided PCPs care in terms of survival or dialysis initiation in CKD patients. Increased awareness of renal disease management among PCPs may be as effective as a co-management by PCPs and nephrologists in order to improve the prognosis of moderate-to-severe CKD.

scholarly journals Impact of superimposed nephrological care to guidelines-directed management by primary care physicians of patients with stable chronic kidney disease: a randomized controlled trial

2019 ◽  
Author(s):  
Patrick Saudan ◽  
Belen Ponte ◽  
Nicola Marangon ◽  
Chantal Martinez ◽  
Lena Berchtold ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Primary Care Physicians ◽  
Clinical Care ◽  
Randomised Trial ◽  
Dialysis Initiation ◽  
The Impact

Abstract Background: Optimal clinical care of patients with chronic kidney disease (CKD) requires collaboration between primary care physicians (PCP) and nephrologists. We undertook a randomised trial to determine the impact of superimposed nephrologist care compared to guidelines-directed management by PCPs in CKD patients after hospital discharge. Methods: Stage 3b-4 CKD patients were enrolled during a hospitalization and randomised in two arms: Co-management by PCPs and nephrologists (interventional arm) versus management by PCPs with written instructions and consultations by nephrologists on demand (standard care). Our primary outcome was death or rehospitalisation within the 2 years post-randomisation. Secondary outcomes were: urgent renal replacement therapy (RRT), decline of renal function and decrease of quality of life at 2 years. Results: From November 2009 to the end of June 2013, we randomised 242 patients. Mean follow-up was 51 + 20 months. Survival without rehospitalisation, GFR decline and elective dialysis initiation did not differ between the two arms. Quality of life was also similar in both groups . Compared to randomised patients, those who either declined to participate in the study or were previously known by nephrologists had a worse survival. Conclusion: These results do not demonstrate a benefit of a regular renal care compared to guided PCPs care in terms of survival or dialysis initiation in CKD patients. Increased awareness of renal disease management among PCPs may be as effective as a co-management by PCPs and nephrologists in order to improve the prognosis of moderate-to-severe CKD.

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.

QOLP-31. QUALITY OF LIFE OF PATIENTS WITH NEWLY DIAGNOSED GLIOBLASTOMA DURING TTFIELDS THERAPY IN ROUTINE CLINICAL CARE: FIRST RESULTS OF THE TIGER STUDY

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi189-vi190
Author(s):  
Oliver Bähr ◽  
Ghazaleh Tabatabai ◽  
Rainer Fietkau ◽  
Roland Goldbrunner ◽  
Martin Glas
Keyword(s):  
Quality Of Life ◽  
Clinical Care ◽  
Demographic Data ◽  
Treatment Compliance ◽  
Additional Treatment ◽  
Phase Iii ◽  
Interdisciplinary Treatment ◽  
Routine Clinical Care

Abstract OBJECTIVE Current interdisciplinary treatment strategies for glioblastoma (GBM) outside clinical trials include maximally safe resection, followed by radiation and chemotherapy. The results of the positive phase III trial EF-14, adding Tumor Treating Fields (TTFields) to temozolomide (TMZ) maintenance therapy, brought an additional treatment method to clinical routine. The TIGER (TTFields In GErmany in Routine Clinical Care) study documents the use of TTFields in routine clinical care with a focus on health-related quality of life (HRQoL) within 4 months after starting therapy, treatment compliance and duration. METHODS This multi-center, prospective, non-interventional study in Germany (NCT03258021) included ndGBM patients eligible for TTFields therapy. Following their consent, patients received a comprehensive introduction to the therapy and baseline demographic data were collected. Information on TTFields therapy decision was evaluated based on a dedicated TTFields questionnaire at baseline in both arms; follow-up information on how patients handle the therapy was collected two months after TTFields treatment start. HRQoL was assessed in patients deciding for TTFields therapy at baseline and at 2 and 4 months using the EORTC-QLQ-C30/BN-20 questionnaires. RESULTS Between August 2017 and November 2019, 710 patients (259 female/451 male) were enrolled at 81 participating centers. The mean age was 58.5 years (range: 19.0-85.0; Cut-off: August 31, 2020). The overall baseline characteristics of the study group reflects a typical GBM population. Of these, 582 (82%) decided to start TTFields; 128 (18%) refused TTFields treatment. HRQoL did not decline during TTFields therapy except for itchy skin, comparable to the EF-14 trial. A detailed analysis of the cohort as well as their reported QoL will be presented. CONCLUSION The TIGER study is the largest non-interventional trial on the use of TTFields in routine clinical care. The use of TTFields in patients with ndGBM did not impair HRQoL during the follow-up period, except for more itchy skin.

scholarly journals Prognostic value of patient-reported quality of life for survival in oesophagogastric cancer: analysis from the population-based POCOP study

2021 ◽  
Author(s):  
J. J. van Kleef ◽  
W. P. M. Dijksterhuis ◽  
H. G. van den Boorn ◽  
M. Prins ◽  
R. H. A. Verhoeven ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Real World ◽  
Prognostic Value ◽  
Advanced Disease ◽  
Population Based ◽  
Summary Score ◽  
Patient Reported ◽  
The Impact ◽  
Oesophagogastric Cancer

Abstract Background Accumulating evidence of trials demonstrates that patient-reported health-related quality of life (HRQoL) at diagnosis is prognostic for overall survival (OS) in oesophagogastric cancer. However, real-world data are lacking. Moreover, differences in disease stages and tumour-specific symptoms are usually not taken into consideration. The aim of this population-based study was to assess the prognostic value of HRQoL, including tumour-specific scales, on OS in patients with potentially curable and advanced oesophagogastric cancer. Methods Data were derived from the Netherlands Cancer Registry and the patient reported outcome registry (POCOP). Patients included in POCOP between 2016 and 2018 were stratified for potentially curable (cT1-4aNallM0) or advanced (cT4b or cM1) disease. HRQoL was measured with the EORTC QLQ-C30 and the tumour-specific OG25 module. Cox proportional hazards models assessed the impact of HRQoL, sociodemographic and clinical factors (including treatment) on OS. Results In total, 924 patients were included. Median OS was 38.9 months in potentially curable patients (n = 795) and 10.6 months in patients with advanced disease (n = 129). Global Health Status was independently associated with OS in potentially curable patients (HR 0.89, 99%CI 0.82–0.97), together with several other HRQoL items: appetite loss, dysphagia, eating restrictions, odynophagia, and body image. In advanced disease, the Summary Score was the strongest independent prognostic factor (HR 0.75, 99%CI 0.59–0.94), followed by fatigue, pain, insomnia and role functioning. Conclusion In a real-world setting, HRQoL was prognostic for OS in patients with potentially curable and advanced oesophagogastric cancer. Several HRQoL domains, including the Summary Score and several OG25 items, could be used to develop or update prognostic models.

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