scholarly journals The ICHOM standard set for patient reported outcomes in diabetes

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
F Carinci ◽  
J Nano ◽  
O Okunade ◽  
S Whittaker ◽  
M Walbaum ◽  
...  
Keyword(s):  
Chronic Disease ◽  
Data Collection ◽  
Outcome Measures ◽  
Health Professionals ◽  
Patient Reported Outcomes ◽  
Ad Hoc ◽  
Case Mix ◽  
Policy And Practice ◽  
Patient Reported ◽  
Standard Set

Abstract Background Between 2017-2018, the International Consortium for Health Outcomes Measurement (ICHOM) conducted a targeted study to deliver a standard set of outcome measures in diabetes, including patient reported outcomes. Compared to other conditions, the study faced the challenge of a complex data collection in a highly prevalent multifactorial chronic disease. Methods We conducted a structured systematic review of outcome measures focusing on adults with either Type 1 or Type 2 diabetes, followed by a consensus-driven modified Delphi panel including a multidisciplinary group of academics, health professionals and patient representatives. The applicability of the standard set was explored by collecting external feedback from patients and health professionals worldwide. Results The panel identified an essential set of case-mix characteristics and clinical outcomes, including factors related to diabetes control, acute events, chronic complications, health services and survival that can be regularly measured using routine data and ad hoc data collection. Three validated instruments were recommended for ad-hoc data collection of patient-reported outcomes: the “WHO-5” for psychological wellbeing, the “PAID” for diabetes distress and the “PHQ-9” for depression. The feedback received from members of the panel highlighted substantial challenges with regards to the applicability of the approach at a large scale. Conclusions The standard set recommended for use to monitor, benchmark and improve diabetes care has received strong support from stakeholders involved in the process worldwide. However, substantial challenges remain on how to organize a systematic data collection worldwide, with implications on policy and practice that can equally apply across all areas of chronic care. Prioritization of selected targets may be useful to achieve practical results in the immediate future. Key messages A standard set for the data collection of person-centred outcomes in diabetes has been successfully delivered by ICHOM, including case-mix characteristics, clinical and person reported outcomes. The feedback received from a range of stakeholders highlight implications for policy and practice in the data collection of PROMs for person-centred chronic disease monitoring.

scholarly journals Standard set of patient-reported outcomes for personality disorder

2021 ◽  
Author(s):  
Valentina Prevolnik Rupel ◽  
Beth Jagger ◽  
Luz Sousa Fialho ◽  
Lisa-Marie Chadderton ◽  
Timea Gintner ◽  
...  
Keyword(s):  
Mental Health ◽  
Personality Disorder ◽  
Outcome Measures ◽  
Working Group ◽  
Clinical Decision Making ◽  
Outcome Measurement ◽  
Clinical Decision ◽  
Case Mix ◽  
Patient Reported ◽  
Standard Set

Abstract Purpose The purpose of the article is to present standard set of outcomes for people with personality disorder (PD), in order to facilitate patient outcome measurement worldwide. Methods The International Consortium for Health Outcomes Measurement (ICHOM) gathered a multidisciplinary international working group, consisting of 16 experts, including clinicians, nurses, psychologists, methodologists and patient representatives, to develop a standard set of outcome measures for people with PD. The Delphi method was used to reach consensus on the scope of the set, outcome domains, outcome measures, case-mix variables and time points for measuring outcomes in service users. For each phase, a project team prepared materials based on systematic literature reviews and consultations with experts. Results The working group decided to include PD, as defined by International Classification of Diseases 11th revision (ICD-11). Eleven core outcomes and three optional outcomes across four health domains (mental health, behaviour, functioning and recovery) were defined as those relevant for people with PD. Validated measures for the selected outcomes were selected, some covering more than one outcome. Case-mix variables were aligned to other ICHOM mental health standard sets and consisted of demographic factors and those related to the treatment that people received. The group recommended that most outcomes are measured at baseline and annually. Conclusion The international minimum standard set of outcomes has the potential to improve clinical decision making through systematic measurement and comparability. This will be key in improving the standard of health care for people with PD across the world.

scholarly journals Development of an international standard set of outcome measures for patients with atrial fibrillation: a report of the International Consortium for Health Outcomes Measurement (ICHOM) atrial fibrillation working group

2020 ◽  
Vol 41 (10) ◽  
pp. 1132-1140 ◽  
Author(s):  
William H Seligman ◽  
Zofia Das-Gupta ◽  
Adedayo O Jobi-Odeneye ◽  
Elena Arbelo ◽  
Amitava Banerjee ◽  
...  
Keyword(s):  
Atrial Fibrillation ◽  
Health Outcomes ◽  
Health Professionals ◽  
Working Group ◽  
Case Mix ◽  
Outcomes Measurement ◽  
International Consortium ◽  
Patient Reported ◽  
Icd Codes ◽  
Standard Set

Abstract Aims As health systems around the world increasingly look to measure and improve the value of care that they provide to patients, being able to measure the outcomes that matter most to patients is vital. To support the shift towards value-based health care in atrial fibrillation (AF), the International Consortium for Health Outcomes Measurement (ICHOM) assembled an international Working Group (WG) of 30 volunteers, including health professionals and patient representatives to develop a standardized minimum set of outcomes for benchmarking care delivery in clinical settings. Methods and results Using an online-modified Delphi process, outcomes important to patients and health professionals were selected and categorized into (i) long-term consequences of disease outcomes, (ii) complications of treatment outcomes, and (iii) patient-reported outcomes. The WG identified demographic and clinical variables for use as case-mix risk adjusters. These included baseline demographics, comorbidities, cognitive function, date of diagnosis, disease duration, medications prescribed and AF procedures, as well as smoking, body mass index (BMI), alcohol intake, and physical activity. Where appropriate, and for ease of implementation, standardization of outcomes and case-mix variables was achieved using ICD codes. The standard set underwent an open review process in which over 80% of patients surveyed agreed with the outcomes captured by the standard set. Conclusion Implementation of these consensus recommendations could help institutions to monitor, compare and improve the quality and delivery of chronic AF care. Their consistent definition and collection, using ICD codes where applicable, could also broaden the implementation of more patient-centric clinical outcomes research in AF.

scholarly journals AB0116 THE EFFECTS OF DISEASE MODIFYING ANTI-RHEUMATIC DRUGS ON PATIENT REPORTED OUTCOMES; PRELIMINARY RESULTS OF A SYSTEMATIC REVIEW AND NETWORK META-ANALYSIS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 1087.1-1087
Author(s):  
M. Van den Dikkenberg, Msc ◽  
N. Luurssen-Masurel ◽  
M. Kuijper ◽  
M. R. Kok ◽  
P. De Jong ◽  
...  
Keyword(s):  
Systematic Review ◽  
Patient Reported Outcomes ◽  
Treatment Effects ◽  
Meta Analysis ◽  
Activity Limitations ◽  
Definitive Answer ◽  
Preliminary Results ◽  
Patient Reported ◽  
Standard Set ◽  
Disease Modifying

Background:The need to involve patient reported outcomes (PROs) in the management of rheumatoid arthritis (RA) increases, since PROs quantify patient relevant outcomes. Although PROs have been incorporated in the core-outcome sets in clinical trials, knowledge about the treatment effects on these PROs is scarce. Therefore, we performed a systematic review on the effects of disease modifying anti-rheumatic drugs (DMARDs), of any type, on relevant PRO domains mentioned in the ICHOM standard set. This might support rheumatologists and RA patients during treatment decisions.Objectives:To get insight in the treatment effects of DMARDs of any type on three PRO domains that matter to patients (pain, activity limitations and fatigue).Methods:A systematic review was performed in Embase, Medline, Web of Science, Cochrane and Google Scholar. Included were all studies that were published before August 2019 and showed DMARD treatment effects in RA on PROs that are part of the ICHOM standard set. Three Bayesian network meta-analyses were performed for the PRO domains pain, activity limitations and fatigue. Preliminary results of DMARDs (in)directly compared to placebo were visualized by forest plots using R.Results:The search strategy yielded n=5974 articles. After selection was performed by 2 independent researchers, n=70 individual articles representing n=53 studies were extracted, over the three PRO domains; pain (n=31), activity limitations (n=41) and fatigue (n=21). In all RCTs, PROs were only reported as secondary or tertiary endpoints. In figure 1, we show the effects on PROs for any type of DMARD investigated compared to placebo. Overall, DMARDs show a greater reduction in pain (standardized mean difference (SMD); -0.97 – -0.22) and most of them in activity limitations (SMD; -0.81 – 0.56). In fatigue, this clear direction is lacking (SMD; -0.86 – 3.5). csDMARDs and anti-TNF seem to perform slightly, but nog significantly, worse than other bDMARDs and tsDMARDs in the first two domains.Conclusion:Within in this systematic review we report a reduction for DMARDs of any type on the domains of pain and activity limitations compared to placebo. However, results are still preliminary and should be interpreted with care. A more comprehensive network analysis might give a more definitive answer which DMARD performs best.Figure 1.Disclosure of Interests:None declared

scholarly journals Development of an international standard set of patient-centred outcome measures for overall paediatric health: a consensus process

2020 ◽  
pp. archdischild-2020-320345
Author(s):  
Beatrix Algurén ◽  
Jessily P Ramirez ◽  
Matthew Salt ◽  
Nick Sillett ◽  
Stacie N Myers ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Healthcare Delivery ◽  
Well Being ◽  
Delphi Process ◽  
Global Perspective ◽  
Modified Delphi ◽  
Starting Point ◽  
Patient Reported ◽  
Standard Set ◽  
Paediatric Health

ObjectiveTo develop an Overall Pediatric Health Standard Set (OPH-SS) of outcome measures that captures what matters to young people and their families and recognising the biopsychosocial aspects of health for all children and adolescents regardless of health condition.DesignA modified Delphi process.SettingThe International Consortium for Health Outcomes Measurement convened an international Working Group (WG) comprised of 23 international experts from 12 countries in the field of paediatrics, family medicine, psychometrics as well as patient advisors. The WG participated in 11 video-conferences, through a modified Delphi process and 9 surveys between March 2018 and January 2020 consensus was reached on a final recommended health outcome standard set. By a literature review conducted in March 2018, 1136 articles were screened for clinician and patient-reported or proxy-reported outcomes. Further, 4315 clinical trials and 12 paediatric health surveys were scanned. Between November 2019 and January 2020, the final standard set was endorsed by a patient validation (n=270) and a health professional (n=51) survey.ResultsFrom a total of 63 identified outcomes, consensus was formed on a standard set of outcome measures that comprises 10 patient-reported outcomes, 5 clinician-reported measures, and 6 case-mix variables. The four developmental age-specific packages (ie, 0–5, 6–12, 13–17, 18–24 years) include either five or six measures with an average time for completion of 20 min.ConclusionsThe OPH-SS is a starting point to drive value-based paediatric healthcare delivery from a global perspective for enhancing child and adolescent physical health and psychosocial well-being.

scholarly journals Development and Validation of a Novel Knee-Specific Patient-Reported Outcomes Measure

2020 ◽  
pp. 1-11
Author(s):  
James L. Farnsworth ◽  
Todd Evans ◽  
Helen Binkley ◽  
Minsoo Kang
Keyword(s):  
Outcome Measures ◽  
Patient Reported Outcomes ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Partial Credit Model ◽  
Partial Credit ◽  
Specific Patient ◽  
Patient Reported ◽  
Full Study

Context: Previous research suggests that several knee-specific patient-reported outcome measures have poor measurement properties. The patient-reported outcomes knee assessment tool (PROKAT) was created to improve assessment of knee-specific function. Examination of the measurement properties of this new measure is critical to determine its clinical value. Objective: Examine the measurement properties of the PROKAT. Design: Cross-sectional study. Setting: Clinical athletic training setting. Patients or Other Participants: The pilot study included 32 student-athletes (mean age = 20.78 [1.01], males = 56.30%). The full study included 203 student-athletes (mean age = 21.46 [4.64], males = 54.70%) from 3 separate institutions. The participants were recruited for both the pilot and full study using face-to-face and electronic (eg, email and social media sites) communications. Intervention(s): Evaluation of the measurement properties of the PROKAT occurred using the Rasch partial-credit model. Main Outcome Measures: Infit and outfit statistics, item step difficulties, person ability parameters, category function, item and test information functions, and Cronbach alpha. An independent samples t test was used to evaluate the differences in injured and noninjured athletes’ scores. Results: The Rasch partial-credit model analysis of pilot test items and qualitative participant feedback were used to modify the initial PROKAT. Evaluation of the revised PROKAT (32 items) indicated 27 items had acceptable model–data fit. The injured athletes scored significantly worse than the noninjured athletes (t188 = 12.89; P < .01). The ceiling effects for the PROKAT were minimal (3.9%). Conclusions: A major advantage of this study was the use of the Rasch measurement and the targeted population. Compared with alternative knee-specific patient-reported outcome measures (eg, Knee Injury Osteoarthritis Outcome Score, International Knee Documentation Committee Subjective Knee Form), the PROKAT has low ceiling effects in athletic populations. In addition, evidence suggests the measure may be capable of distinguishing between injured and noninjured athletes.

scholarly journals Generic Patient-Reported Outcomes and Outcome Measures: A Systematic Review Study Protocol

2021 ◽  
Author(s):  
Yuki Seidler ◽  
Erika Mosor ◽  
Margaret R Andrews ◽  
Carolina Watson ◽  
Nick Bott ◽  
...  
Keyword(s):  
Systematic Review ◽  
Outcome Measures ◽  
Systematic Reviews ◽  
Patient Reported Outcomes ◽  
Outcome Measurement ◽  
Meta Analysis ◽  
Patient Reported Outcome ◽  
Cochrane Library ◽  
Screening Process ◽  
Patient Reported

Background: Patient-reported outcomes (PROs) are an essential part of health outcome measurement and vital to patient-centricity and valued-based care. Several international consortia have developed core outcome sets and many of them include PROs. PROs are measured by patient-reported outcome measures (PROMs). PROs and PROMs can be generic or specific to certain diseases or conditions. While the characteristics of generic PROs and PROMs are well recognised as widely relevant and applicable across different domains, diseases and conditions, there is a lack of knowledge on the types of PROs measured by generic PROMs. We also do not know in which disease areas generic PROs and PROMs are commonly used. To date, there has been no systematic review solely focusing on generic PROMs, what they measure and their areas of application. Objectives: This systematic review will identify core PROs measured by generic PROMs used in adult populations and the areas in which they are applied. Methods: We will conduct a systematic review of reviews. The screening process and the reporting will comply with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) 2020 Statement. We will use four databases, Medline [PubMed], CINHAL [Ebsco], Cochrane [Cochrane Library], and PsycINFO [Ovid], and reports from international consortia. Inclusion criteria are systematic reviews, meta-analysis or patient-reported outcome sets developed by international consortia reporting on generic PROMs in adult populations. Articles primarily focusing on patient-reported experience measures (PREMs), children or adolescents, or those not written in English will be excluded. Risk of bias will be assessed by checking if the included articles comply with established guidelines for systematic reviews such as the PRISMA statement. We will extract generic PROMs and PROs measured by these PROMs, and the areas applied from the selected articles and reports. Extracted data and information will be quantitatively and qualitatively synthesised without statistical interference. The quality of the synthesised evidences will be assessed by clarifying the strengths, limitations and possible biases in our review.

scholarly journals Engagement and Participant Experiences With Consumer Smartwatches for Health Research: Longitudinal, Observational Feasibility Study (Preprint)

2019 ◽  
Author(s):  
Anna L Beukenhorst ◽  
Kelly Howells ◽  
Louise Cook ◽  
John McBeth ◽  
Terence W O'Neill ◽  
...  
Keyword(s):  
Data Collection ◽  
Knee Osteoarthritis ◽  
Patient Reported Outcomes ◽  
Health Data ◽  
Self Report ◽  
Sensor Data ◽  
Battery Life ◽  
Activity Data ◽  
Technical Problems ◽  
Patient Reported

BACKGROUND Wearables provide opportunities for frequent health data collection and symptom monitoring. The feasibility of using consumer cellular smartwatches to provide information both on symptoms and contemporary sensor data has not yet been investigated. OBJECTIVE This study aimed to investigate the feasibility and acceptability of using cellular smartwatches to capture multiple patient-reported outcomes per day alongside continuous physical activity data over a 3-month period in people living with knee osteoarthritis (OA). METHODS For the KOALAP (Knee OsteoArthritis: Linking Activity and Pain) study, a novel cellular smartwatch app for health data collection was developed. Participants (age ≥50 years; self-diagnosed knee OA) received a smartwatch (Huawei Watch 2) with the KOALAP app. When worn, the watch collected sensor data and prompted participants to self-report outcomes multiple times per day. Participants were invited for a baseline and follow-up interview to discuss their motivations and experiences. Engagement with the watch was measured using daily watch wear time and the percentage completion of watch questions. Interview transcripts were analyzed using grounded thematic analysis. RESULTS A total of 26 people participated in the study. Good use and engagement were observed over 3 months: most participants wore the watch on 75% (68/90) of days or more, for a median of 11 hours. The number of active participants declined over the study duration, especially in the final week. Among participants who remained active, neither watch time nor question completion percentage declined over time. Participants were mainly motivated to learn about their symptoms and enjoyed the self-tracking aspects of the watch. Barriers to full engagement were battery life limitations, technical problems, and unfulfilled expectations of the watch. Participants reported that they would have liked to report symptoms more than 4 or 5 times per day. CONCLUSIONS This study shows that capture of patient-reported outcomes multiple times per day with linked sensor data from a smartwatch is feasible over at least a 3-month period. INTERNATIONAL REGISTERED REPORT RR2-10.2196/10238

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