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.

Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method

2021 ◽  
pp. 155335062199887
Author(s):  
Alaa El-Hussuna ◽  
Ines Rubio-Perez ◽  
Monica Millan ◽  
Gianluca Pellino ◽  
Ionut Negoi ◽  
...  
Keyword(s):  
Colorectal Surgery ◽  
Outcome Measures ◽  
Short Form ◽  
Wide Spectrum ◽  
Core Outcome Set ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Eortc Qlq

Purpose. The primary aim of the study was to review the existing literature about patient-reported outcome measures (PROMs) in colorectal cancer and IBD. The secondary aim was to present a road map to develop a core outcome set via opinion gathering using social media. Method. This study is the first step of a three-step project aimed at constructing simple, applicable PROMs in colorectal surgery. This article was written in a collaborative manner with authors invited both through Twitter via the #OpenSourceResearch hashtag. The 5 most used PROMs were presented and discussed as slides/images on Twitter. Inputs from a wide spectrum of participants including researchers, surgeons, physicians, nurses, patients, and patients’ organizations were collected and analyzed. The final draft was emailed to all contributors and 6 patients’ representatives for proofreading and approval. Results. Five PROM sets were identified and discussed: EORTC QLQ-CR29, IBDQ short health questionnaire, EORTC QLQ-C30, ED-Q5-5L, and Short Form-36. There were 315 tweets posted by 50 tweeters with 1458 retweets. Awareness about PROMs was generally limited. The general psycho-physical well-being score (GPP) was suggested and discussed, and then a survey was conducted in which more than 2/3 of voters agreed that GPP covers the most important aspects in PROMs. Conclusion. Despite the limitations of this exploratory study, it offered a new method to conduct clinical research with opportunity to engage patients. The general psycho-physical well-being score suggested as simple, applicable PROMs to be eventually combined procedure-specific, disease-specific, or symptom-specific PROMs if needed.

scholarly journals #MadelungDeformity: Insights Into a Rare Congenital Difference Using Social Media

Hand ◽  
2021 ◽  
pp. 155894472110541
Author(s):  
Abbas Peymani ◽  
Max M. Lokhorst ◽  
Austin D. Chen ◽  
Chantal M.A.M. van der Horst ◽  
Bernard T. Lee ◽  
...  
Keyword(s):  
Social Media ◽  
Pain Intensity ◽  
Upper Extremity ◽  
Peer Relationships ◽  
Well Being ◽  
Global Perspective ◽  
Pain Interference ◽  
Measurement Information ◽  
Madelung Deformity ◽  
Patient Reported

Background Madelung deformity is a rare congenital hand difference with little known regarding the patient perspective. In this cross-sectional survey study, we harnessed the global reach of social media to understand the clinical spectrum of Madelung deformity and its impact on physical, mental, and social health. Methods A survey was developed based on a previously published protocol and multiple Patient-Reported Outcomes Measurement Information System (PROMIS) short forms. The survey was distributed on several Madelung deformity communities on Facebook and Instagram. T-scores were calculated, interpreted, and compared between patients who underwent surgery and those who did not. Correlations between scores were calculated using the Spearman rank correlation coefficient. Results Mean PROMIS scores for adults were as follows: pain intensity, 4.9 ± 2.8; pain interference, 57.6 ± 10.0; upper extremity, 35.2 ± 8.1; depression, 53.8 ± 11.1; anxiety, 55.4 ± 11.4; and ability to participate in social roles and activities, 42.5 ± 7.7. Mean scores for children were as follows: pain intensity, 5.0 ± 2.8; pain interference, 55.7 ± 11.3; upper extremity function, 24.6 ± 10.4; depressive symptoms, 57.7 ± 11.3; anxiety, 57.3 ± 11.9; and peer relationships, 42.2 ± 10.3. Conclusions Madelung deformity has significant effects on patients’ physical, mental, and social well-being, even after surgical treatment. Using social media, we were able to compensate for Madelung deformity’s rarity by engaging an international audience, demonstrating the feasibility to conduct research through it, and providing a global perspective of the disease entity.

scholarly journals Patient-Reported Outcome Measures (PROMs) in Pediatric Non-Malignant Hematology: A Systematic Review

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2180-2180
Author(s):  
Robert J Klaassen ◽  
Julia Y. Kinahan ◽  
Johann M. I. Graham ◽  
Yamilée V. Hébert ◽  
Katie O'Hearn
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Outcome Measures ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Clinical Environment ◽  
Patient Reported ◽  
Disease Specific

Introduction: Patient reported outcome measures (PROMs) are questionnaires completed by patients or caregivers without interpretation by healthcare professionals. As such, they allow patient concerns about a variety of healthcare issues to be identified and addressed in an efficient and actionable manner. PROMs can be generic, with questions relevant to multiple disease groups or disease-specific, with questions targeting the symptoms, limitations, and feelings common to the disease group. This systematic review identified generic and disease-specific PROMs for monitoring symptoms and health-related quality of life (HRQoL) in 4 pediatric non-malignant hematologic disease groups: thalassemia, hemophilia, immune thrombocytopenia (ITP), and sickle cell disease (SCD). Methods: Databases (MEDLINE, Embase, HaPI, CINAHL, and PsycTESTS) were searched to identify publications that either validated or used PROMs as an outcome measure in the four disease groups. Articles were excluded when <30% of the population was pediatric (<18 years), when the study setting was inpatient, when the tool had not been validated, or when the article did not report the use of a PROM for monitoring symptoms or HRQoL. Notably, hemophilia records published prior to 2016 were not screened as a systematic review by Limperg et al. (2017) identified validated PROMs in the pediatric hemophilia population and was used to include relevant articles. Results: The search identified 1176 unique records, with 902 records remaining for title and abstract screening after removal of 274 hemophilia articles published prior to the systematic review. Including hemophilia records identified from the 2017 review, 217 articles met inclusion criteria incorporating 107 generic and 20 disease-specific PROMs. Of the generic tools, the most frequent categories identified include psychological well-being (26 tools), general quality of life (19 tools), and family impact (19 tools). The most frequently used tool was the PedsQL 4.0 Generic Core Scales (66 studies), appearing 33 times in SCD, 25 times in thalassemia, 5 times in ITP, and 3 times in hemophilia. Other commonly used generic tools include the Short Form Health Survey, Child Health Questionnaire, PROMIS Health Measures, and Child Behaviour Checklist (Table). Disease-specific tools identified in the review include the PedsQL SCD Module, Kids ITP Tool, Haemo-QoL, CHO-KLAT, and TranQol (Table). In addition, 10 studies reported on pain diaries and 9 of these studies were SCD focused, the other being hemophilia focused. Conclusion: This systematic review identified several generic and disease-specific PROMs that have been used in pediatric non-malignant hematology. Although generic tools have been used more frequently, many disease-specific tools have been validated and are available for use in the clinical environment. We are currently conducting focus groups with patients, parents, and clinicians to determine the optimal choice of tools for monitoring symptoms and HRQoL in the pediatric non-malignant clinical environment. Disclosures No relevant conflicts of interest to declare.

scholarly journals Electronic Forms For Patient Reported Outcome Measures (PROMs) ARE AN Effective, Time-Efficient, And Cost-Minimizing Alternative To Paper Forms

2021 ◽  
Author(s):  
Jennifer Y Yu ◽  
Talia Goldberg ◽  
Nicholas Lao ◽  
Brian M Feldman ◽  
Y. Ingrid Goh
Keyword(s):  
Outcome Measures ◽  
User Experience ◽  
Pediatric Rheumatology ◽  
Intraclass Correlation ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Valuable Insight ◽  
Efficient Manner ◽  
Patient Reported

Abstract BACKGROUND: Patient reported outcome measures (PROMs) provide valuable insight on patients’ well-being and facilitates communication between healthcare providers and their patients. The increased integration of the technology within the healthcare setting presents the opportunity to collect PROMs electronically, rather than on paper. The Childhood Health Assessment Questionnaire (CHAQ) and Quality of My Life (QoML) are common PROMs collected from pediatric rheumatology patients. The objectives of this study are to a) determine the equivalence of the paper and electronic forms (e-form) of CHAQ and QoML questionnaires; b) identify potential benefits and barriers associated with using an e-form to capture PROMs; and c) gather feedback on user experience. METHODS: Participants completed both a paper and an e-form of the questionnaires in a randomized order, following which they completed a feedback survey. Agreement of the scores between the forms were statistically analyzed using the intraclass correlation coefficient (ICC) (95% Confidence Interval (CI)) and bias was assessed using a Bland-Altman plot. Completion and processing times of the forms were compared using mean and median measures. Quantitative analysis was performed to assess user experience ratings, while comments were qualitatively analyzed to identify important themes.RESULTS: 196 patients participated in this project. Scores on the forms had high ICC agreement >0.9. New patients took longer than returning patients to complete the forms. Overall, the e-form was completed and processed in a shorter amount of time than the paper form. 83% of survey respondents indicated that they either preferred the e-form or had no preference. Approximately 10% of respondents suggested improvements to improve the user interface.CONCLUSIONS: E-forms collect comparable information in an efficient manner to paper forms. Given that patients and caregivers indicated they preferred completing PROMs in this manner, we will implement their suggested changes and incorporate e-forms as standard practice for PROMs collection in our pediatric rheumatology clinic.

Developing an International Standard Set of Patient-Reported Outcome Measures for Psychotic Disorders

2021 ◽  
pp. appi.ps.2020008
Author(s):  
Emily McKenzie ◽  
Lucy Matkin ◽  
Luz Sousa Fialho ◽  
Ifeoma Nneka Emelurumonye ◽  
Timea Gintner ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Psychotic Disorders ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
International Standard ◽  
Patient Reported ◽  
Standard Set

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.

Cataract standard set for outcome measures: An Italian tertiary referral centre experience

2021 ◽  
pp. 112067212110183
Author(s):  
Daniele Tognetto ◽  
Rosa Giglio ◽  
Chiara De Giacinto ◽  
Carmen Dell’Aquila ◽  
Giulia Pian ◽  
...  
Keyword(s):  
Cataract Surgery ◽  
Outcome Measures ◽  
Intraoperative Complications ◽  
Average Score ◽  
Referral Centre ◽  
Tertiary Referral ◽  
Tertiary Referral Centre ◽  
Intermediate Vision ◽  
Patient Reported ◽  
Standard Set

Purpose: Implementation of the International Consortium for Health Outcomes Measurements (ICHOM) standard for cataract surgery into clinical practice at an Italian tertiary referral centre. Methods: Prospective, observational, descriptive study consisting of the registry and analysis of cataract surgeries performed during a 6-month enrolment period at the University Eye Clinic of Trieste, Trieste, Italy. Outcomes were recorded and analysed according to the ICHOM Cataract Standard Set version 2.0.1. Records included clinician-reported outcome measures (CROMs) – visual outcome and complications – and patient-reported outcome measures (PROMs) – self-assessed vision with the Catquest-9SF questionnaire. Correlations between PROMs and CROMs were evaluated. A multiple linear regression was used for predicting the change in PROMs with surgery. Results: A total of 218 eyes (of 218 patients) were analysed. Postoperative corrected distance visual acuity (CDVA) was ⩾0.3 in 89.0% (194/218) of eyes. There was a statistically significant improvement of the post-operative Catquest-9SF global average score. ( p < 0.001). The change in the Catquest-9SF score significantly correlated with the change in Item 2 score (related to intermediate vision) ( r = 0.634, p < 0.001). A predictive model of the change in the Catquest-9SF score was found ( p < 0.001, R2: 0.527) based on preoperative Catquest-9SF total score, presence or not of macular degeneration, presence or not of intraoperative complications, age >75 years old, and preoperative CDVA. Conclusions: Cataract surgery improves the functional vision, with some factors limiting the outcomes such as comorbidities. Self-perceived improvement in intermediate vision significantly influenced the improvement in self-assessed vision.

scholarly journals Patient-reported outcome measures and value-based medicine in paediatrics: a timely review

2021 ◽  
Author(s):  
YH Tan ◽  
JX Siew ◽  
B Thomas ◽  
KC Ng
Keyword(s):  
Healthcare System ◽  
Outcome Measures ◽  
Healthcare Delivery ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
A Value ◽  
Patient Reported ◽  
Measurement Tools ◽  
The Status ◽  
Based Medicine

Healthcare delivery is moving towards a more personalised and patient-centric approach. There is now an appropriate emphasis on providing value in our healthcare system. Patient-reported outcome measures (PROMs) assess our patients’ perceptions of the status of their health and quality of life, measured over a period of time. PROM is an integral component of a value-driven and value-based healthcare system and is key if we want to practise value-based medicine. In paediatrics and child health, PROMs, if implemented well with appropriate measurement tools that are regularly updated and validated in a self-learning healthcare ecosystem, will help to enhance personalised healthcare delivery and collectively improve the health of the community at large. This review covers the role of PROMs in paediatrics, as well as their role in value-based medicine.

Methods for shortening patient-reported outcome measures

2018 ◽  
Vol 28 (10-11) ◽  
pp. 2992-3011 ◽  
Author(s):  
Daphna Harel ◽  
Murray Baron
Keyword(s):  
Outcome Measures ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Theory Model ◽  
Mixed Integer ◽  
Optimal Test ◽  
Test Assembly ◽  
Patient Reported ◽  
High Discrimination

Patient-reported outcome measures are widely used to assess patient experiences, well-being, and treatment response in clinical trials and cohort-based observational studies. However, patients may be asked to respond to many different measures in order to provide researchers and clinicians with a wide array of information regarding their experiences. Collecting such long and cumbersome patient-reported outcome measures may burden patients, increase research costs, and potentially reduce the quality of the data collected. Nonetheless, little research has been conducted on replicable, and reproducible methods to shorten these instruments that result in shortened forms of minimal length. This manuscript proposes the use of mixed integer programming through Optimal Test Assembly as a method to shorten patient-reported outcome measures. This method is compared to the existing standard in the field, which is selecting items based on having high discrimination parameters from an item response theory model. The method is then illustrated in an application to a fatigue scale for patients with Systemic Sclerosis.

Abstract 106: Defining an International Standard Set of Patient-centered Outcome Measures After Stroke

2015 ◽  
Vol 8 (suppl_2) ◽  
Author(s):  
Joel Salinas ◽  
Keyword(s):  
Intracerebral Hemorrhage ◽  
Outcome Measures ◽  
Risk Adjustment ◽  
Short Form ◽  
Stroke Severity ◽  
Patient Centered ◽  
Duration Of Symptoms ◽  
International Standard ◽  
Patient Reported ◽  
Standard Set

Background: Value-based healthcare delivery is a strategy to align patients, providers, and payers toward improving outcomes while reducing costs. We sought to define an international standard set of patient-centered, stroke health outcomes. Methods: We assembled an international expert panel representing patients, advocates, and physician experts in stroke outcomes, stroke registries, global health, epidemiology, and rehabilitation. A modified Delphi process was used to reach consensus recommendations for a Standard Set of outcome measures, baseline risk adjustment variables, and included populations for use in both low and high income countries. Results: Patients presenting to a hospital with ischemic stroke or intracerebral hemorrhage evaluated with brain imaging were selected as the required included population, with optional inclusion of transient ischemic attacks. Because of differences in ascertainment and imaging modalities, duration of symptoms and type of imaging are collected to allow for comparisons of homogeneous groups across various countries and practice settings. Basic functional status is assessed at prestroke baseline, index admission, discharge, 90 days, and 1 year thereafter. Co-morbidities and stroke severity are collected for risk adjustment. Symptomatic intracerebral hemorrhage after thrombolysis is the only complication captured, and many measures reflect patient-reported quality of life outcomes and priorities captured in the Patient Reported Outcomes Measurement Information System 10-question short form (PROMIS-10) and elements from existing registries. Conclusions: The stroke measure Standard Set is proposed for implementation to permit meaningful comparisons and increase value of stroke care worldwide using a simple, pragmatic strategy.

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