scholarly journals Patient-reported outcomes and psycho-oncological screening in hematology: a practical example of routine electronic monitoring

2020 ◽  
Vol 13 (3) ◽  
pp. 285-293
Author(s):  
Jens Lehmann ◽  
Lisa M. Wintner ◽  
Monika Sztankay ◽  
Wolfgang Willenbacher ◽  
Roman Weger ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Electronic Monitoring ◽  
Healthcare Providers ◽  
Point Of View ◽  
Functional Impairments ◽  
Oncological Treatment ◽  
Outpatient Unit ◽  
Physician Contact ◽  
Patient Reported ◽  
Oncological Screening

Summary Patient-reported outcomes (PROs) have gained increasing importance in oncology. PROs can supplement medical treatment with important information about the patient’s quality of life (QoL), which is typically assessed using standardized questionnaires. PROs capture the symptomatology and functional impairments as perceived by the patient without further interpretation by another party. In this article, we describe how routinely assessed electronic PROs (ePROs) at the outpatient unit of the Department of Hematology Innsbruck complement the Austrian Myeloma Registry (AMR) and clinical routine. There is a broad body of literature showing that ePRO assessments can supplement patient–physician contact and help focus communication on clinically relevant issues that matter for the patient. Based on ePRO results, physicians can initiate clinical action such as referring patients to psycho-oncological treatment. Electronic PRO assessments might facilitate communication between healthcare providers among themselves but also between healthcare providers and patients, and make it possible to incorporate the patients’ point of view into treatment in a standardized way. The example depicted herein demonstrates how ePRO assessments can be integrated and used in routine monitoring and for psycho-oncological screening.

scholarly journals Patient-Reported Outcomes, Health-Related Quality of Life, and Clinical Outcomes for Urothelial Cancer Patients Receiving Chemo- or Immunotherapy: A Real-Life Experience

2021 ◽  
Vol 10 (9) ◽  
pp. 1852
Author(s):  
Gry Assam Taarnhøj ◽  
Henriette Lindberg ◽  
Christoffer Johansen ◽  
Helle Pappot
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Patient Reported Outcomes ◽  
Life Experience ◽  
Locally Advanced ◽  
Neoadjuvant Treatment ◽  
Real Life ◽  
Oncological Treatment ◽  
Patient Reported

Patients with urothelial cell carcinoma (UCC) often have comorbidities, which cause trouble for the completion of oncological treatment, and little is known about their quality of life (QoL). The aim of the present study was to obtain and describe patient-reported outcomes (PRO) and QoL data from UCC patients in the treatment for locally advanced muscle-invasive or metastatic UCC. A total of 79 patients with UCC completed four questionnaires (EORTC QLQ-C30, QLQ-BLM30, HADS, and select PRO-CTCAE™ questions) once weekly during their treatment. From those, 26 patients (33%) underwent neoadjuvant treatment for local disease while 53 patients (67%) were treated for metastatic disease. Of all patients, 54% did not complete the planned treatment due to progression, nephrotoxicity, death, or intolerable symptoms during treatment. The five most prevalent PRO-CTCAE grade ≥ 2 symptoms were frequent urination (37%), fatigue (35%), pain (31%), dry mouth (23%), and swelling of the arms or legs (23%). The baseline mean overall QoL was 61 (±SD 24) for all patients (neoadjuvant (73, ±SD 19) and metastatic (54, ±SD 24)) and remained stable over the course of treatment for both groups. A stable overall QoL was observed for the patients in this study. More than half of the patients did not, however, complete the planned treatment. Further supportive care is warranted for bladder cancer patients.

A pilot study of the patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE) in a phase I clinical trial.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6587-6587 ◽  
Author(s):  
Rui Qin ◽  
Amylou C. Dueck ◽  
Daniel Satele ◽  
Julian R. Molina ◽  
Charles Erlichman ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Clinical Trials ◽  
Pilot Study ◽  
Adverse Events ◽  
Phase I ◽  
Patient Reported Outcomes ◽  
Point Of View ◽  
Phase I Clinical Trial ◽  
Phase I Clinical Trials ◽  
Patient Reported

6587 Background: Recently the Patient-Reported Outcomes version of the CTCAE was developed to augment clinically graded adverse events with information reported directly by patients on clinical trials (Basch, 2009). The validation and potential application of PRO-CTCAE in phase I clinical trials are of great interest as toxicity is the primary endpoint. Methods: Selected PRO-CTCAE items (21 items measuring 12 symptomatic adverse events) corresponding to the major adverse events required to be graded clinically were collected in an ongoing phase I clinical trial of weekly cilengitide and paclitaxel in patients with advanced solid malignancies (NCT01276496). PRO-CTCAE was administered in a paper booklet by a clinical research associate prior to treatment on days 1, 8 and 15 of their regular visits. These PRO-CTCAE items were summarized descriptively in comparison to clinician-assessed CTCAE ver 4.0 (NCI, 2009) during the first cycle. As a pilot study to assess feasibility of PRO-CTCAE in phase I trials, PRO-CTCAE was not intended for determination of dose-limiting toxicity. Results: Twelve patients were accrued to two separate doses of cilengitide and paclitaxel. The median age was 56 (range 36—67) and half of patients were female. All patients had an ECOG performance score <= 1. Over 90% of patients had received prior surgery and chemotherapy. All but one patient completed weekly PRO-CTCAE during the first cycle, the only patient refused to complete weeks 2 and 3 did not give a reason. PRO-CTCAE captured most of the symptomatic adverse events reflected in clinician-assessed CTCAE. Some symptomatic adverse events were not reported clinically by CTCAE but were reported by patients by PRO-CTCAE. Overall, PRO-CTCAE items indicated slightly more severe degree of symptoms experienced by patients than those reported in CTCAE. Conclusions: This is the first study that PRO-CTCAE items were integrated within regular study visits in a phase I trial. The administration of PRO-CTCAE has been proved feasible and fruitful, providing consistent and enhanced symptomatic toxicity from the patient point of view. The addition of PRO-CTCAE did not significantly increase patient burden. Clinical trial information: NCT01276496.

scholarly journals Treatment for Osteoporosis among Women in Japan: Associations with Patient Characteristics and Patient-Reported Outcomes in the 2008–2011 Japan National Health and Wellness Surveys

2014 ◽  
Vol 2014 ◽  
pp. 1-9 ◽  
Author(s):  
Masayo Sato ◽  
Jeffrey Vietri ◽  
Jennifer A. Flynn ◽  
Saeko Fujiwara
Keyword(s):  
Patient Reported Outcomes ◽  
Healthcare Providers ◽  
Patient Characteristics ◽  
Current Treatment ◽  
Self Report ◽  
Health And Wellness ◽  
Bivariate Statistics ◽  
Annual Survey ◽  
Patient Reported ◽  
History Of

This study was conducted to identify characteristics associated with treatment for osteoporosis among women aged 50 years and older in Japan and to explore differences among patients according to treatment regimen. Data were provided by a large annual survey representative of Japanese aged 18 and older; all measures were by self-report. Women aged 50 and older who reported diagnosed osteoporosis (N=900) were compared based on current treatment status using bivariate statistics and logistic regression. Approximately 1 in 3 women in this study reporting diagnosed osteoporosis were currently untreated. Factors associated with current treatment for osteoporosis included having ≥1 physician visit in the prior 6 months (OR = 5.4,P<0.001), self-rated moderate or severe osteoporosis (OR = 2.8,P<0.001), completion of menopause (OR = 1.6,P<0.05), and family history of osteoporosis (OR = 1.5,P<0.05), while longer duration of osteoporosis diagnosis (OR = 0.9,P<0.05) and arthritis (OR = 0.7,P<0.05) were associated with lower odds of treatment. These findings suggest that diagnosed patients are not being actively managed in the longer term, and efforts need to be made to ensure that patients stay engaged with their healthcare providers.

scholarly journals Hip Functional Impairments Exist Bilaterally, Are Related To Hip Strength And Predict Patient-Reported Outcomes In Patients With Chondrolabral Pathology

2016 ◽  
Vol 3 (suppl_1) ◽  
Author(s):  
Joanne L. Kemp ◽  
May Arna Risberg ◽  
Anthony G. Schache ◽  
Michael Makdissi ◽  
Michael G. Pritchard ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Functional Impairments ◽  
Hip Strength ◽  
Patient Reported

scholarly journals Different Approaches for Case-Mix Adjustment of Patient-Reported Outcomes to Compare Healthcare Providers—Methodological Results of a Systematic Review

Cancers ◽  
2021 ◽  
Vol 13 (16) ◽  
pp. 3964
Author(s):  
Nora Tabea Sibert ◽  
Holger Pfaff ◽  
Clara Breidenbach ◽  
Simone Wesselmann ◽  
Christoph Kowalski
Keyword(s):  
Patient Reported Outcomes ◽  
Healthcare Providers ◽  
Clinical Information ◽  
Patient Characteristics ◽  
Case Mix ◽  
Initial Attempt ◽  
Patient Reported ◽  
Rehabilitation Facilities ◽  
Case Mix Adjustment

Patient-reported outcomes (PROs) are increasingly being used to compare the quality of outcomes between different healthcare providers (medical practices, hospitals, rehabilitation facilities). However, such comparisons can only be fair if differences in the case-mix between different types of provider are taken into account. This can be achieved with adequate statistical case-mix adjustment (CMA). To date, there is a lack of overview studies on current CMA methods for PROs. The aim of this study was to investigate which approaches are currently used to report and examine PROs for case-mix-adjusted comparison between providers. A systematic MEDLINE literature search was conducted (February 2021). The results were examined by two reviewers. Articles were included if they compared (a) different healthcare providers using (b) case-mix-adjusted (c) patient-reported outcomes (all AND conditions). From 640 hits obtained, 11 articles were included in the analysis. A wide variety of patient characteristics were used as adjustors, and baseline PRO scores and basic sociodemographic and clinical information were included in all models. Overall, the adjustment models used vary considerably. This evaluation is an initial attempt to systematically investigate different CMA approaches for PROs. As a standardized approach has not yet been established, we suggest creating a consensus-based methodological guideline for case-mix adjustment of PROs.

scholarly journals Advancing the Development of Patient-reported Outcomes for Adult Myositis at OMERACT 2016: An International Delphi Study

2017 ◽  
Vol 44 (11) ◽  
pp. 1683-1687 ◽  
Author(s):  
Jin Kyun Park ◽  
Christopher A. Mecoli ◽  
Helene Alexanderson ◽  
Malin Regardt ◽  
Lisa Christopher-Stine ◽  
...  
Keyword(s):  
Focus Groups ◽  
Delphi Study ◽  
Patient Reported Outcomes ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
The United States ◽  
Delphi Survey ◽  
Modified Delphi ◽  
Patient Reported ◽  
Pharmaceutical Industries

Objective.To define a set of core patient-reported domains and respective instruments for use in idiopathic inflammatory myopathies (IIM). Previously, we reported a systematic literature review on patient-reported outcomes (PRO) in IIM followed by conducting international focus groups to elicit patient perspectives of myositis symptoms and effects.Methods.Based on qualitative content analysis of focus groups, an initial list of 26 candidate domains was constructed. We subsequently conducted an international modified Delphi survey to identify the importance of each of the 26 domains. Participants were asked to rate each domain on a scale of 0–10 (0 = not important, 10 = very important).Results.In this first round of the Delphi survey, 643 patients participated from the United States (n = 543), Sweden (n = 49), and South Korea (n = 51). Of the 26 domains, 19 (73%) were rated of high importance (≥ 7/10). The top 5 domains were muscle symptoms, fatigue, interactions with healthcare, medication side effects, and pain. During Outcome Measures in Rheumatology (OMERACT) 2016, we discussed the goal for ultimate reduction in the number of domains and the importance of considering representation of healthcare providers from other specialties, caregivers, representatives of pharmaceutical industries, and regulatory authorities in the next rounds of Delphi to represent broader perspectives on IIM.Conclusion.Further prioritization and a reduction in the number of domains will be needed for the next Delphi. At the next biennial OMERACT meeting, we aim to present and seek voting on a Myositis Preliminary PRO Core Set to enable ultimate measure selection and development.

scholarly journals Exploring Pediatric Tele-Rheumatology Practices During COVID-19: A Survey of the PRCOIN Network

2021 ◽  
Vol 9 ◽  
Author(s):  
Y. Ingrid Goh ◽  
Danielle R. Bullock ◽  
Janalee Taylor ◽  
Rajdeep Pooni ◽  
Tzielan C. Lee ◽  
...  
Keyword(s):  
Pediatric Rheumatology ◽  
Patient Reported Outcomes ◽  
Healthcare Providers ◽  
Patient Centered ◽  
Patient Reported ◽  
Hands On ◽  
Centered Care ◽  
Virtual Visits ◽  
Continued Use

Healthcare providers were rapidly forced to modify the way they practiced medicine during the coronavirus disease 2019 (COVID-19) pandemic. Many providers transitioned from seeing their patients in person to virtually using telemedicine platforms with limited training and experience using this medium. In pediatric rheumatology, this was further complicated as musculoskeletal exams typically require hands-on assessment of patients. The objective of this study was to examine the adoption of telemedicine into pediatric rheumatology practices, to assess its benefits and challenges, and to gather opinions on its continued use. A survey was sent to the lead representatives of each Pediatric Rheumatology Care and Outcomes Improvement Network (PR-COIN) site to collect data about their center's experience with telemedicine during the COVID-19 pandemic. Quantitative data were analyzed using descriptive statistics, and qualitative data were thematically analyzed. Responses were received from the majority [19/21 (90%)] of PR-COIN sites. All respondents reported transitioning from in-person to primarily virtual patient visits during the COVID-19 pandemic. All centers reported seeing both new consultations and follow-up patients over telemedicine. Most centers reported using both audio and video conferencing systems to conduct their telemedicine visits. The majority of respondents [13/19 (68%)] indicated that at least 50% of their site's providers consistently used pediatric Gait Arms Legs and Spine (pGALS) to perform active joint count assessments over telemedicine. Over half of the centers [11/19 (58%)] reported collecting patient-reported outcomes (PROs), but the rate of reliably documenting clinical components varied. A few sites [7/19 (37%)] reported performing research-related activity during telemedicine visits. All centers thought that telemedicine visits were able to meet providers' needs and support their continued use when the pandemic ends. Benefits reported with telemedicine visits included convenience and continuity of care for families. Conversely, challenges included limited ability to perform physical exams and varying access to technology. Pediatric rheumatology providers were able to transition to conducting virtual visits during the COVID-19 pandemic. Healthcare providers recognize how telemedicine can enhance their practice, but challenges need to be overcome in order to ensure equitable, sustainable delivery of quality and patient-centered care.

Patient Outcomes, NOMS, and Goal Writing for Pediatrics and Adults

2014 ◽  
Vol 23 (2) ◽  
pp. 65-71
Author(s):  
Nancy Swigert
Keyword(s):  
Healthcare System ◽  
Patient Outcomes ◽  
Measurement System ◽  
Patient Reported Outcomes ◽  
Healthcare Providers ◽  
System Level ◽  
Daily Lives ◽  
Outcomes Measurement ◽  
Patient Reported ◽  
Facility Level

Changes in the healthcare reimbursement models have made it clear that healthcare providers, including speech-language pathologists (SLPs), should focus on the outcome of therapy. Payment methodologies are changing so that payment will likely be made based on the outcome achieved, not on the number of services provided nor the percent of improvement on an impairment-focused goal. Patients and their caregivers must be involved in determining the desired outcome and in selecting goals to help the patient reach that outcome. The goals must be written in measurable terms. Outcomes selected must be meaningful to the patient and must be functional; focusing on things that will have an impact on their daily lives. Patient-reported outcomes are viewed favorably by payers. Utilizing tools such as the ASHA National Outcomes Measurement System (NOMS) can help the clinician maintain a focus on function. Patient outcomes can also be reported in the aggregate at the facility level and can contribute to answers at the healthcare system level. Outcomes at all three levels—patient, facility, and healthcare system—are an important responsibility of each SLP.

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