scholarly journals Clinical Outcome Assessment in Cancer Rehabilitation and the Central Role of Patient-Reported Outcomes

Cancers ◽  
2021 ◽  
Vol 14 (1) ◽  
pp. 84
Author(s):  
Jens Lehmann ◽  
Maria Rothmund ◽  
David Riedl ◽  
Gerhard Rumpold ◽  
Vincent Grote ◽  
...  
Keyword(s):  
Clinical Outcome ◽  
Patient Reported Outcomes ◽  
Health Condition ◽  
Performance Outcomes ◽  
Cancer Rehabilitation ◽  
Third Party ◽  
Special Focus ◽  
Patient Reported ◽  
Value Based Care ◽  
Clinical Outcome Assessments

The aim of cancer rehabilitation is to help patients regain functioning and social participation. In order to evaluate and optimize rehabilitation, it is important to measure its outcomes in a structured way. In this article, we review the different types of clinical outcome assessments (COAs), including Clinician-Reported Outcomes (ClinROs), Observer-Reported Outcomes (ObsROs), Performance Outcomes (PerfOs), and Patient-Reported Outcomes (PROs). A special focus is placed on PROs, which are commonly defined as any direct report from the patient about their health condition without any interpretation by a third party. We provide a narrative review of available PRO measures (PROMs) for relevant outcomes, discuss the current state of PRO implementation in cancer rehabilitation, and highlight trends that use PROs to benchmark value-based care. Furthermore, we provide examples of PRO usage, highlight the benefits of electronic PRO (ePRO) collection, and offer advice on how to select, implement, and integrate PROs into the cancer rehabilitation setting to maximize efficiency.

scholarly journals Development of a Conceptual Framework of Patient-reported Outcomes in Light Chain Amyloidosis: A Qualitative Study

2021 ◽  
Author(s):  
Anita D'Souza ◽  
Judith Myers ◽  
Rachel Cusatis ◽  
Angela Dispenzieri ◽  
Muriel Finkel ◽  
...  
Keyword(s):  
Clinical Outcome ◽  
Conceptual Understanding ◽  
Light Chain ◽  
Patient Reported Outcomes ◽  
Symptom Burden ◽  
Al Amyloidosis ◽  
Outcome Assessments ◽  
Patient Reported ◽  
Clinical Outcome Assessments ◽  
The Impact

Abstract Background Light chain (AL) amyloidosis is a plasma cell neoplasm associated with high early mortality and severe morbidity that can cause severe disability. We explored the impact of AL amyloidosis on symptoms and well-being from the perspectives of patients and health care providers who regularly care for AL patients. We intended to develop a conceptual understanding of patient-reported outcomes in AL amyloidosis to identify the context of use and concept of interest for a clinical outcome assessments tool in this disease.Method Twenty patients and 10 professionals were interviewed. Patient interviews captured the spectrum of amyloidosis experience including time from diagnosis, type of organ involvement, and presence and type of treatment received. Interviews with professionals included physicians, advanced practice providers, registered nurse, and a patient advocate; these interviews covered similar topics. Results The impact of AL amyloidosis on patients’ life was multidimensional, with highly subjective perceptions of normality and meaning. Four major themes from patients and experts included diagnosis of AL amyloidosis, living with AL amyloidosis, symptom burden, and social roles. Barriers to patient-reported outcomes data collection in patients were additionally explored from experts. The themes provide a comprehensive understanding of the important experiences of symptom burden and its impact on daily life from AL amyloidosis patients’ and from the perspectives of professionals who care for patients with AL amyloidosis. Conclusion These findings further the conceptual understanding and identification of a preliminary model of concept of interest for development of a clinical outcome assessments tool for AL amyloidosis.

scholarly journals Outcome measures in coeliac disease trials: the Tampere recommendations

Gut ◽  
2018 ◽  
Vol 67 (8) ◽  
pp. 1410-1424 ◽  
Author(s):  
Jonas F Ludvigsson ◽  
Carolina Ciacci ◽  
Peter HR Green ◽  
Katri Kaukinen ◽  
Ilma R Korponay-Szabo ◽  
...  
Keyword(s):  
Clinical Outcome ◽  
Coeliac Disease ◽  
Outcome Measures ◽  
Patient Reported Outcomes ◽  
Treatment Strategies ◽  
Therapeutic Trials ◽  
Immunogenic Peptides ◽  
Patient Reported ◽  
Patient Representatives

ObjectiveA gluten-free diet is the only treatment option of coeliac disease, but recently an increasing number of trials have begun to explore alternative treatment strategies. We aimed to review the literature on coeliac disease therapeutic trials and issue recommendations for outcome measures.DesignBased on a literature review of 10 062 references, we (17 researchers and 2 patient representatives from 10 countries) reviewed the use and suitability of both clinical and non-clinical outcome measures. We then made expert-based recommendations for use of these outcomes in coeliac disease trials and identified areas where research is needed.ResultsWe comment on the use of histology, serology, clinical outcome assessment (including patient-reported outcomes), quality of life and immunological tools including gluten immunogenic peptides for trials in coeliac disease.ConclusionCareful evaluation and reporting of outcome measures will increase transparency and comparability of coeliac disease therapeutic trials, and will benefit patients, healthcare and the pharmaceutical industry.

scholarly journals A post pandemic roadmap toward remote assessment for neuromuscular disorders: limitations and opportunities

2022 ◽  
Vol 17 (1) ◽  
Author(s):  
Jacqueline Montes ◽  
Katy J. Eichinger ◽  
Amy Pasternak ◽  
Cara Yochai ◽  
Kristin J. Krosschell
Keyword(s):  
Virtual Environment ◽  
Patient Reported Outcomes ◽  
Neuromuscular Disorders ◽  
Patient Reported ◽  
Remote Assessment ◽  
Disease Impact ◽  
Clinical Outcome Assessments ◽  
And Function ◽  
Patient Burden

AbstractRecent advances in technology and expanding therapeutic opportunities in neuromuscular disorders has resulted in greater interest in and development of remote assessments. Over the past year, the rapid and abrupt COVID-19 shutdowns and stay-at-home orders imposed challenges to routine clinical management and clinical trials. As in-person services were severely limited, clinicians turned to remote assessments through telehealth to allow for continued care. Typically, disease-specific clinical outcome assessments (COAs) for neuromuscular disorders (NMD) are developed over many years through rigorous and iterative processes to fully understand their psychometric properties. While efforts were underway towards developing remote assessments for NMD before the pandemic, few if any were fully developed or validated. These included assessments of strength, respiratory function and patient-reported outcomes, as well as wearable technology and other devices to quantify physical activity and function. Without many choices, clinicians modified COAs for a virtual environment recognizing it was not yet known how they compared to standard in-person administration. Despite being able to quickly adapt to the demands of the COVID-19 pandemic, these experiences with remote assessments uncovered limitations and opportunities. It became clear that existing COAs required modifications for use in a virtual environment limiting the interpretation of the information gathered. Still, the opportunity for real-world evaluation and reduced patient burden were clear benefits to remote assessment and may provide a more robust understanding and characterization of disease impact in NMD. Hence, we propose a roadmap navigating an informed post-pandemic path toward development and implementation of safe and successful use of remote assessments for patients with NMD.

scholarly journals Association of Outpatient Cancer Rehabilitation With Patient-Reported Outcomes and Performance-Based Measures of Function

2020 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Mackenzi Pergolotti ◽  
Kelley R. Covington ◽  
Ashley N. Lightner ◽  
Jessica Bertram ◽  
Melissa Thess ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Cancer Rehabilitation ◽  
Patient Reported ◽  
And Performance

scholarly journals ACE-Neuro: A Tailored Exercise Oncology Program for Neuro-Oncology Patients – Study Protocol

2021 ◽  
Author(s):  
Julia T. Daun ◽  
Lauren C. Capozzi ◽  
Gloria Roldan Urgoiti ◽  
Meghan H. McDonough ◽  
Jacob C. Easaw ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Exercise Program ◽  
Cancer Rehabilitation ◽  
Secondary Outcome ◽  
Functional Fitness ◽  
Oncology Patients ◽  
Primary Brain Tumours ◽  
Primary Brain Tumour ◽  
Patient Reported ◽  
Exercise Oncology

AbstractBackgroundPatients with primary brain tumours lack access to exercise oncology and wellness resources. The purpose of the Alberta Cancer Exercise – Neuro-Oncology (ACE-Neuro) study is to assess the feasibility of a tailored neuro-oncology exercise program for patients across Alberta, Canada. The primary outcome is to assess the feasibility of ACE-Neuro. The secondary outcome is to examine preliminary effectiveness of ACE-Neuro on patient-reported outcomes and functional fitness.MethodsNeuro-oncology patients with a malignant or benign primary brain tumour that are pre, on, or completed treatment, are >18 years, and able to consent in English are eligible to participate in the study. Following referral from the clinical team to cancer rehabilitation and the study team, participants are triaged to determine their appropriateness for ACE-Neuro or other cancer rehabilitation or physiatry resources. In ACE-Neuro, participants complete a tailored 12-week exercise program with pre-post assessments of patient-reported outcomes, functional fitness, and physical activity. ACE-Neuro includes individual and group-based exercise sessions, as well as health coaching.ConclusionWe are supporting ACE-Neuro implementation into clinical cancer care, with assessment of needs enabling a tailored exercise prescription.

scholarly journals Designing and piloting a generic research architecture and workflows to unlock German primary care data for secondary use

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Thomas Bahls ◽  
Johannes Pung ◽  
Stephanie Heinemann ◽  
Johannes Hauswaldt ◽  
Iris Demmer ◽  
...  
Keyword(s):  
Primary Care ◽  
Data Integration ◽  
Record Linkage ◽  
Patient Reported Outcomes ◽  
Medical Data ◽  
Third Party ◽  
Family Doctors ◽  
Analysis Phase ◽  
Patient Reported ◽  
Research Architecture

Abstract Background Medical data from family doctors are of great importance to health care researchers but seem to be locked in German practices and, thus, are underused in research. The RADAR project (Routine Anonymized Data for Advanced Health Services Research) aims at designing, implementing and piloting a generic research architecture, technical software solutions as well as procedures and workflows to unlock data from family doctor’s practices. A long-term medical data repository for research taking legal requirements into account is established. Thereby, RADAR helps closing the gap between the European countries and to contribute data from primary care in Germany. Methods The RADAR project comprises three phases: (1) analysis phase, (2) design phase, and (3) pilot. First, interdisciplinary workshops were held to list prerequisites and requirements. Second, an architecture diagram with building blocks and functions, and an ordered list of process steps (workflow) for data capture and storage were designed. Third, technical components and workflows were piloted. The pilot was extended by a data integration workflow using patient-reported outcomes (paper-based questionnaires). Results The analysis phase resulted in listing 17 essential prerequisites and guiding requirements for data management compliant with the General Data Protection Regulation (GDPR). Based on this list existing approaches to fulfil the RADAR tasks were evaluated—for example, re-using BDT interface for data exchange and Trusted Third Party-approach for consent management and record linkage. Consented data sets of 100 patients were successfully exported, separated into person-identifying and medical data, pseudonymised and saved. Record linkage and data integration workflows for patient-reported outcomes in the RADAR research database were successfully piloted for 63 responders. Conclusion The RADAR project successfully developed a generic architecture together with a technical framework of tools, interfaces, and workflows for a complete infrastructure for practicable and secure processing of patient data from family doctors. All technical components and workflows can be reused for further research projects. Additionally, a Trusted Third Party-approach can be used as core element to implement data privacy protection in such heterogeneous family doctor’s settings. Optimisations identified comprise a fully-electronic consent recording using tablet computers, which is part of the project’s extension phase.

Cancer rehabilitation outpatient consultation: Patient characteristics, symptom burden and quality of life.

2017 ◽  
Vol 35 (5_suppl) ◽  
pp. 136-136
Author(s):  
Carolina Gutierrez
Keyword(s):  
Mental Health ◽  
Standard Deviation ◽  
Cancer Survivors ◽  
Patient Reported Outcomes ◽  
Cancer Rehabilitation ◽  
Population Mean ◽  
T Score ◽  
Patient Reported ◽  
The Us

136 Background: Cancer rehabilitation focuses on the functional and psychological needs of cancer survivors. Patient-reported outcomes have been increasingly used as part of the standard of care during clinical encounters. We review characteristics that patients present to their outpatient cancer rehabilitation consultation at a large academic hospital. Methods: Patients presenting for their first outpatient cancer rehabilitation consultation completed a paper copy of the PROMIS-10 (Patient Reported Outcomes Measurement Information System) instrument immediately prior to meeting with the physician. It includes 10 items evaluating quality of life, social life, functional activity, mental health, pain, and fatigue. A caregiver or health care provider could provide assistance in completing the form. Patient-reported outcomes were analyzed as part of an IRB-approved protocol. Data were analyzed using descriptive statistics and the “PROMIS Scoring Global Short Form v1.0 and v1.1” (12/16/2010). T-Score distributions are standardized such that a 50 represents the average (mean) for the US general population, and the standard deviation around that mean is 10 points. Results: Twenty-seven patients presented for consultation (63% women, 37% men) from 3/2014 through 6/2015 with an average age of 54.5 (44-76 range). Disease types included 52% brain tumors, 33% breast, 5% prostate, and 1% of each of the following: melanoma, myelofibrosis, and multiple myeloma. For our population, the physical health subscale score was 11.51 with a T-Score 38.6, standard error 4.1, a T-Score more than one standard deviation below the population mean. The mental health subscale was 11.92 with a T-Score 43.5, standard error 3.6, representing less than one standard deviation below the mean. The global health score was 28.55, which fell 2 standard deviations below the population mean. Conclusions: Compared to the US population mean, cancer survivors presenting for a cancer rehabilitation consultation had lower physical health than mental health. Our findings suggest the importance of screening cancer survivors for physical impairments and providing interventions focused on functional recovery.

scholarly journals Patient-reported Outcomes across Categories of Juvenile Idiopathic Arthritis

2015 ◽  
Vol 42 (10) ◽  
pp. 1914-1921 ◽  
Author(s):  
Alysha J. Taxter ◽  
E. Paul Wileyto ◽  
Edward M. Behrens ◽  
Pamela F. Weiss
Keyword(s):  
Quality Of Life ◽  
Juvenile Idiopathic Arthritis ◽  
Physical Function ◽  
Patient Reported Outcomes ◽  
Tertiary Care ◽  
Antiinflammatory Drug ◽  
Special Focus ◽  
Female Sex ◽  
Patient Reported

Objective.Although there is increasing reliance on patient-reported outcomes (PRO) for disease management, there is little known about the differences in PRO across juvenile idiopathic arthritis (JIA) categories. The purpose of our study was to assess PRO across JIA categories, including pain, quality of life, and physical function, and to determine clinical factors associated with differences in these measures across categories.Methods.This was a longitudinal cohort study of patients with JIA at a tertiary care pediatric rheumatology clinic. Subjects, PRO, and clinical variables were identified by querying the electronic medical record. Mixed-effects regression assessed pain, quality of life, and function.Results.Subjects with enthesitis-related arthritis (ERA) and undifferentiated JIA had significantly more pain, poorer quality of life, and poorer physical function. The ERA and undifferentiated JIA categories, physician’s global disease activity assessment, female sex, and nonsteroidal antiinflammatory drug use were significantly associated with more pain, poorer quality of life, and poorer function. In models limited to ERA, female sex and tender enthesis count were significant predictors of decreased function.Conclusion.ERA and undifferentiated JIA categories had poorer PRO than other JIA categories. Further work is needed to address ways to improve PRO in children with JIA, with a special focus on children with ERA and undifferentiated JIA.

Sign in / Sign up

Export Citation Format

Share Document