Patient-reported outcomes of migraine treatment with erenumab: results from a national patient survey

2022 ◽  
Author(s):  
Austėja Dapkutė ◽  
Jurgita Vainauskienė ◽  
Kristina Ryliškienė
Keyword(s):  
Patient Reported Outcomes ◽  
Patient Survey ◽  
Migraine Treatment ◽  
Patient Reported ◽  
National Patient

Generating the American Shoulder and Elbow Surgeons Score Using Multivariable Predictive Models and Computer Adaptive Testing to Reduce Survey Burden

2021 ◽  
Vol 49 (3) ◽  
pp. 764-772
Author(s):  
Matthew S. Tenan ◽  
Joseph W. Galvin ◽  
Timothy C. Mauntel ◽  
John M. Tokish ◽  
James R. Bailey ◽  
...  
Keyword(s):  
Physical Function ◽  
Predictive Model ◽  
Predictive Models ◽  
Patient Reported Outcomes ◽  
Patient Survey ◽  
Patient Reported Outcome ◽  
Pain Interference ◽  
Measurement Information ◽  
Level Of Evidence ◽  
Patient Reported

Background: The preferred patient-reported outcome measure for the assessment of shoulder conditions continues to evolve. Previous studies correlating the Patient-Reported Outcomes Measurement Information System (PROMIS) computer adaptive tests (CATs) to the American Shoulder and Elbow Surgeons (ASES) score have focused on a singular domain (pain or physical function) but have not evaluated the combined domains of pain and physical function that compose the ASES score. Additionally, previous studies have not provided a multivariable prediction tool to convert PROMIS scores to more familiar legacy scores. Purpose: To establish a valid predictive model of ASES scores using a nonlinear combination of PROMIS domains for physical function and pain. Study Design: Cohort study (Diagnosis); Level of evidence, 3. Methods: The Military Orthopaedics Tracking Injuries and Outcomes Network (MOTION) database is a prospectively collected repository of patient-reported outcomes and intraoperative variables. Patients in MOTION research who underwent shoulder surgery and completed the ASES, PROMIS Physical Function, and PROMIS Pain Interference at varying time points were included in the present analysis. Nonlinear multivariable predictive models were created to establish an ASES index score and then validated using “leave 1 out” techniques and minimal clinically important difference /substantial clinical benefit (MCID/SCB) analysis. Results: A total of 909 patients completed the ASES, PROMIS Physical Function, and PROMIS Pain Interference at presurgery, 6 weeks, 6 months, and 1 year after surgery, providing 1502 complete observations. The PROMIS CAT predictive model was strongly validated to predict the ASES (Pearson coefficient = 0.76-0.78; R2 = 0.57-0.62; root mean square error = 13.3-14.1). The MCID/SCB for the ASES was 21.7, and the best ASES index MCID/SCB was 19.4, suggesting that the derived ASES index is effective and can reliably re-create ASES scores. Conclusion: The PROMIS CAT predictive models are able to approximate the ASES score within 13 to 14 points, which is 7 points more accurate than the ASES MCID/SCB derived from the sample. Our ASES index algorithm, which is freely available online ( https://osf.io/ctmnd/ ), has a lower MCID/SCB than the ASES itself. This algorithm can be used to decrease patient survey burden by 11 questions and provide a reliable ASES analog to clinicians.

scholarly journals Pain Due to Multiple Sclerosis: Analysis of the Prevalence and Economic Burden in Canada

2007 ◽  
Vol 12 (4) ◽  
pp. 259-265 ◽  
Author(s):  
Charles Piwko ◽  
Olivier B Desjardins ◽  
Basil G Bereza ◽  
Marcio Machado ◽  
Barbara Jaszewski ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Economic Burden ◽  
Patient Reported Outcomes ◽  
Telephone Interview ◽  
Patient Survey ◽  
Patient Surveys ◽  
Patient Reported ◽  
Prevalence Of Pain ◽  
The Mean ◽  
The Relationship

BACKGROUND: Multiple sclerosis (MS) is a neurological disease affecting approximately 50,000 Canadians. Although studies have described overall MS costs, none have focused specifically on MS-related pain.OBJECTIVES: To estimate the prevalence of MS-related pain in Canada, the proportion of patients treated and responding to treatment for MS-related pain, and the associated economic burden.METHODS: Results were captured through physician and patient surveys. Patients were recruited through MS clinics and the MS Society. Patient-reported outcomes and resource utilization over the previous six months were collected by telephone interview. Costs were measured in 2004 Canadian dollars. The economic burden was extrapolated to the population using national demographics and prevalence. Spearman’s ρ assessed the relationship between cost and pain severity.RESULTS: Physicians estimated that 46% of their MS patients experienced MS-related pain, and that 35% received treatment for pain. Pain was reported to be relieved somewhat in 29%±10% of their patients, adequately in 26%±19% and poorly in 27%±13%, while 17%±9% received no relief. Two hundred ninety-seven participants completed the patient survey. Seventy-one per cent (211 of 297 patients) experienced MS-related pain. Eighty per cent of patients reported taking some type of medication to manage their pain, and of these, 82% reported some reduction in pain. The mean ± SD direct cost per patient of MS-related pain was $2,528±5,695. The mean ± SD indirect cost per patient was $669±875. Total costs were positively correlated with levels of self-reported pain (ρ=0.291, P<0.0001). The estimated six-month burden of pain of MS patients in Canada was $79,444,888.CONCLUSIONS: The prevalence of pain is high in MS patients. This condition may be underdiagnosed and undertreated, and results in a significant economic burden on society.

scholarly journals Patient-reported outcomes on familial amyloid polyneuropathy (FAP)

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Fabian J. Bolte ◽  
Christel Langenstroer ◽  
Frauke Friebel ◽  
Anna Hüsing-Kabar ◽  
Martin Dugas ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Unmet Needs ◽  
Patient Survey ◽  
Familial Amyloid Polyneuropathy ◽  
Inherited Disease ◽  
Treatment Access ◽  
Substantial Impact ◽  
Organ Systems ◽  
Patient Reported ◽  
Amyloid Polyneuropathy

Abstract Background Transthyretin familial amyloid polyneuropathy (ATTR-FAP) is a rare autosomal dominant inherited disease affecting multiple organ systems. ATTR-FAP patients’ experiences have rarely been documented. The aim of this study was to collect patient reported outcomes across different countries to assess unmet needs and challenges. An anonymous survey was conducted at the 2nd European meeting on ATTR amyloidosis in Berlin in September 2019. Survey questions captured information on demographics, clinical characteristics, diagnostic experience, quality of life, disability and ATTR-FAP management. Results A total of 38 ATTR-FAP patients from 15 different countries participated in the survey. ATTR-FAP had a substantial impact on patients’ day-to-day life, including difficulties in standing, walking, and participation in community activities. It also had negative effects on the mental health of patients. The survey highlighted several unmet needs and challenges from a patients’ perspective, including (i) a need for increased awareness and a standardized diagnostic pathway, (ii) a need for better treatment access and supportive care and (iii) a need for better information about research and clinical trials. Conclusions This global patient survey provides valuable findings to address ATTR-FAP patients’ needs and challenges in order to further the goal of patient-centered care.

839-P: Outcomes of Systematic User Involvement and User Research in a National Patient-Reported Outcomes Diabetes Initiative

Diabetes ◽  
2019 ◽  
Vol 68 (Supplement 1) ◽  
pp. 839-P
Author(s):  
SOREN E. SKOVLUND ◽  
LISE MELLERGAARD NØRGAARD ◽  
SIMON STEFANSEN ◽  
TRINE HONNENS DE LICHTENBERG ◽  
LISE TROELSEN ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
User Involvement ◽  
User Research ◽  
Patient Reported ◽  
National Patient

Cancer patients' answers to surveys: Incorporation into the electronic health record (EHR) can decrease manual data entry and increase patient-centered information.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 130-130
Author(s):  
Katy E. French ◽  
Thomas W. Feeley ◽  
Tayab A. Andrabi ◽  
Alexis B. Guzman ◽  
John D. Calhoun
Keyword(s):  
Medical History ◽  
Cancer Patients ◽  
Health Information ◽  
Patient Reported Outcomes ◽  
Data Entry ◽  
Patient Survey ◽  
Patient Data ◽  
Patient Portal ◽  
Patient Centered ◽  
Patient Reported

130 Background: Delivery of value-based cancer care has centered on the use of EHR’s and how these applications can document health information, including patient reported outcomes (PRO’s), (1-4). Survey information must be incorporated into the medical record with minimal staff intervention. Our institution, and many cancer centers are currently using “EPIC” as their EHR platform. Although this is a data driven platform, and data can be extracted and reported as desired, certain things need to be done prior to going live in order to ensure this occurs. Surveys must be built using standardized “smart data elements” (SDE’s). If patient data is gathered, but not integrated correctly into the EHR, one will find themselves manually entering data. The goal is to allow patients to answer questions about their health history 1 time, validate answers, incorporate into the EHR, and report data. Methods: We engaged our technology team prior to “go-live” to build patient survey questionnaires. 40 survey questions, were mapped to 72 specific EHR/“EPIC” SDE’s. The SDE’s included cancer diagnoses and past medical history. Patients received and completed the electronic survey via the patient portal. Clinic providers validated patient answers from the surveys and the information was incorporated into the EHR. Results: Patient entered survey data collected, documented, and reported within the EHR. Decreased data entry by providers, efficiently incorporating the patient cancer diagnosis and medical history into the EHR. Data collected for review/reporting/research as needed. Conclusions: EHR’s can gather specific/discrete patient data to benefit both patients and providers. Cancer patients can participate in providing health information easily incorporated and documented by the provider. Data can be updated as needed, and used for patient reported outcomes (PRO’s) and other research endeavors. EHR’s should enhance care by allowing providers to spend more face to face time with patients and providing data that is most important to patients from which they may make informed decisions about their health care.

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