Dataset Information

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.

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.

SUBMITTER: Seligman WH

PROVIDER: S-EPMC7060456 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Publications

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.

Seligman William H WH Das-Gupta Zofia Z Jobi-Odeneye Adedayo O AO Arbelo Elena E Banerjee Amitava A Bollmann Andreas A Caffrey-Armstrong Bridget B Cehic Daniel A DA Corbalan Ramon R Collins Michael M Dandamudi Gopi G Dorairaj Prabhakaran P Fay Matthew M Van Gelder Isabelle C IC Goto Shinya S Granger Christopher B CB Gyorgy Bathory B Healey Jeff S JS Hendriks Jeroen M JM Hills Mellanie True MT Hobbs F D Richard FDR Huisman Menno V MV Koplan Kate E KE Lane Deirdre A DA Lewis William R WR Lobban Trudie T Steinberg Benjamin A BA McLeod Christopher J CJ Moseley Spencer S Timmis Adam A Yutao Guo G Camm A John AJ

European heart journal 20200301 10

<h4>Aims</h4>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 s ...[more]

PMID: 31995195

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Project description:ObjectivesThe COVID-19 pandemic has resulted in widespread morbidity and mortality with the consequences expected to be felt for many years. Significant variation exists in the care even of similar patients with COVID-19, including treatment practices within and between institutions. Outcome measures vary among clinical trials on the same therapies. Understanding which therapies are of most value is not possible unless consensus can be reached on which outcomes are most important to measure. Furthermore, consensus on the most important outcomes may enable patients to monitor and track their care, and may help providers to improve the care they offer through quality improvement. To develop a standardised minimum set of outcomes for clinical care, the International Consortium for Health Outcomes Measurement (ICHOM) assembled a working group (WG) of 28 volunteers, including health professionals, patients and patient representatives.DesignA list of outcomes important to patients and professionals was generated from a systematic review of the published literature using the MEDLINE database, from review of outcomes being measured in ongoing clinical trials, from a survey distributed to patients and patient networks, and from previously published ICHOM standard sets in other disease areas. Using an online-modified Delphi process, the WG selected outcomes of greatest importance.ResultsThe outcomes considered by the WG to be most important were selected and categorised into five domains: (1) functional status and quality of life, (2) mental functioning, (3) social functioning, (4) clinical outcomes and (5) symptoms. The WG identified demographic and clinical variables for use as case-mix risk adjusters. These included baseline demographics, clinical factors and treatment-related factors.ConclusionImplementation of these consensus recommendations could help institutions to monitor, compare and improve the quality and delivery of care to patients with COVID-19. Their consistent definition and collection could also broaden the implementation of more patient-centric clinical outcomes research.

Project description:BackgroundPatient-reported outcome (PRO) instruments measure health gains, including changes in health-related quality of life (HRQoL). Previous studies have assessed the reliability and relationship of multiple HRQoL instruments in search of the optimal instrument for feasible measurement of PROs. Although the 15D instrument was shown to have the best sensitivity and construct validity among cardiac patients, it is unknown how well it captures relevant disease-specific information scores compared to instruments included in the International Consortium for Health Outcomes Measurement (ICHOM) standard set. The aim of this study was to investigate whether the disease-specific PRO instruments and a generic HRQoL instrument capture disease related symptoms in coronary artery disease (CAD) patients.MethodsHealth status and HRQoL were assessed with the instruments included in the ICHOM standard set: Seattle Angina Questionnaire short-form (SAQ-7), Rose Dyspnea Scale (RDS), two-item Patient Health Questionnaire (PHQ-2), and with the 15D HRQoL instrument at baseline and 1 year from the treatment in a university hospital setting. Spearman correlation and explanatory factor analysis were used to assess the relationship of baseline scores and 1-year change in scores of 297 patients.ResultsAt baseline, the overall 15D score and SAQ-physical limitation (SAQ-PL), 15D "breathing" and SAQ-PL, as well as "breathing" and RDS showed moderately strong correlations. The factor interpreted to reflect "Breathing-related physical activity", based on high loadings of "breathing", RDS, SAQ-PL, "mobility", "vitality", and "usual activities", explained 19.2% of the total variance. Correlations between 1-year changes in scores were fair. The factor of "Breathing-related physical activity", with significant loading of RDS, SAQ-PL, "breathing, "usual activities", "vitality\", "sexual activity", "mobility", and disease-specific quality of life explained 20.5% of the total variance in 1-year change in scores. The correlation of angina frequency measured by SAQ-7 and the 15D instrument was poor.ConclusionsThe 15D detects dyspnea and depression similarly to RDS and PHQ-2 but not angina similarly to the SAQ-7. This may call for supplementing the 15D instrument with a disease-specific instrument when studying CAD patients.

Project description:Introduction The gathering of health and quality-of-life issues that matter most to patients over so-called patient-reported outcomes (PROs) is a key aspect of patient-centered healthcare. In obstetrics, this approach has the potential to expand the current understanding of what quality entails by including patient perspectives. The International Consortium for Health Outcome Measures (ICHOM), founded in 2012, is a global organization which aims to standardise the collection of PROs and make the results comparable worldwide. A PRO Set for obstetrics, "Pregnancy and Childbirth", was published in 2018. The aim of our work was to translate the instruments of this set that are not yet available in German into German. Methods The instruments were translated from English into German using the Functional Assessment of Chronic Illness Therapy (FACIT) translation method. The translated instruments consisted of the Breastfeeding Self-Efficacy Scale - Short Form (BSES-SF), the Mother-to-Infant Bonding Scale (MIBS), and the Birth Satisfaction Scale - Revised (BSS-R) as well as a number of individual questions (items). Results The final version of the German translations were found to be easily comprehensible by the target group. During the cognitive debriefing, it became clear that pregnant women and women who had just given birth often used a number of medically incorrect terms to refer to their symptoms or complaints. In the translations great care was taken to ensure that the wording was as close as possible to the general usage of the language while at the same time the terminology was medically correct. To achieve a precise but comprehensible translation, the response structure of the BSES-SF also had to be adapted. Conclusions The instruments of the ICHOM Standard Set "Pregnancy and Childbirth", which were not previously available in German, were successfully translated into German. This meant dealing with a few challenges such as adapting questions or response structures. The cultural and linguistic comprehensibility of the German translations were confirmed during the subsequent cognitive debriefing. The translations offer the possibility of implementing the complete ICHOM Set for Pregnancy and Childbirth. This would provide an opportunity to expand the existing understanding of quality by including the subjective experience of women during and after childbirth and, in future, to compare outcomes with those of other hospitals across the world.

Project description:BackgroundClinical guidelines for specific conditions fragment care provision for elders. The International Consortium for Health Outcomes Measurement (ICHOM) has developed a global standard set of outcome measures for comprehensive assessment of older persons. The goal of this study was to report value-based health metrics in Taiwan using this ICHOM toolset.MethodsThe cross-sectional study of baseline data excerpted from a prospective longitudinal cohort, which recruited people ≥65 years old with ≥3 chronic medical conditions between July and December 2018. All participants received measurements of physical performance, anthropometric characteristics, health-related behaviors, Charlson Comorbidity Index, and Montreal Cognitive Assessment. The ICHOM toolset comprises three tiers: 1 includes frailty and having chosen a preferred place of death; 2 includes polypharmacy, falls, and participation in decision-making; and 3 includes loneliness, activities of daily living, pain, depression, and walking speed. These items were converted into a 0-10 point value-based healthcare score, with high value-based health status defined as ≥8/10 points.ResultsFrequencies of individual ICHOM indicators were: frail 11.7%, chose preferred place of death 14.4%, polypharmacy 31.5%, fell 17.1%, participated in decision-making 81.6%, loneliness 26.8%, limited activities of daily living 22.4%, pain 10.4%, depressed mood 13.0%, and slowness 38.5%. People with high disease burden (OR 0.40, 95% CI 0.21-0.76, p = 0.005) or cognitive impairment (OR 0.49, 95%CI 0.27-0.87, p = 0.014) were less likely to have high value-based healthcare status.ConclusionsThe ICHOM Standard Set Older Person health outcome measures provide an opportunity to shift from a disease-centric medical paradigm to whole person-focused goals. This study identified advanced age, chronic disease burden and cognitive impairment as important barriers to achieving high value-based healthcare status.

Dataset Information

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.

Aims

Methods and results

Conclusion

Publications

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.

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