Montreal Accord on Patient-Reported Outcomes (PROs) use series – Paper 2: terminology proposed to measure what matters in health

Mayo, Nancy E.; Figueiredo, Sabrina; Ahmed, Sara; Bartlett, Susan J.

doi:10.1016/j.jclinepi.2017.04.013

Cited by 59 publications

(47 citation statements)

References 35 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Examples are self-reported questionnaires, face to face interviews and telephone interviews about physical, mental, and social health. Recently, a relationship model between patient-generated data and other source data was proposed [15]. In that work, technologyreported outcome (TechO) is vaguely mentioned as part of the clinician-reported outcomes (ClinRO) branch and directly linked with performance-reported outcomes (PerfO), which are assessments done by clinicians in close cooperation with the patient.…”

Section: Expert Data and Dynamic Datamentioning

confidence: 99%

See 1 more Smart Citation

Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Estrada-Galiñanes¹,

Wac²

2018

2018 IEEE 3rd International Workshops on Foundations and Applications of Self* Systems (FAS*W)

View full text Add to dashboard Cite

Health-related data analysis plays an important role in self-knowledge, disease prevention, diagnosis, and quality of life assessment. With the advent of data-driven solutions, a myriad of apps and Internet of Things (IoT) devices (wearables, home-medical sensors, etc) facilitates data collection and provide cloud storage with a central administration. More recently, blockchain and other distributed ledgers became available as alternative storage options based on decentralised organisation systems. We bring attention to the human data bleeding problem and argue that neither centralised nor decentralised system organisations are a magic bullet for data-driven innovation if individual, community and societal values are ignored. The motivation for this position paper is to elaborate on strategies to protect privacy as well as to encourage data sharing and support open data without requiring a complex access protocol for researchers. Our main contribution is to outline the design of a self-regulated Open Health Archive (OHA) system with focus on quality of life (QoL) data.

show abstract

Section: Expert Data and Dynamic Datamentioning

confidence: 99%

“…In a sense, lifelogging technology and self-quantification is at the core of patient-centric research. More traditional clinical studies use clinician-reported (ClinRO), performance-based (PerfO) and self-reported (SRO) outcomes [15]. Professionals assess activities in PerfO, while the participant is required to fill SRO.…”

Section: Introductionmentioning

confidence: 99%

Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Estrada-Galiñanes¹,

Wac²

2018

2018 IEEE 3rd International Workshops on Foundations and Applications of Self* Systems (FAS*W)

View full text Add to dashboard Cite

show abstract

“…The importance of defining, 32 choosing, 33,34 measuring, 35,36 analyzing, 37,38 and reporting 39 outcomes appropriately has always been at the core of health care practice and research since evidencebased medicine came into play. 40,41 In particular, concepts like patient important outcomes (as opposed to physiopathological outcomes), clinically important difference (in its many definitions) 37,38,42 and the observation that important outcomes are often patient-reported have progressively gained traction in the health care [43][44][45][46][47][48][49][50] and hemophilia [51][52][53][54][55][56][57] communities. More recently, the value of direct involvement of patients in research 32,58,59 and the need for specific strategies to harmonize patient-relevant outcomes across studies have been proposed and adopted.…”

Section: The Evolution Of Outcome Measurement Theory Patient-repormentioning

confidence: 99%

Hemophilia trials in the twenty‐first century: Defining patient important outcomes

Konkle

Skinner

Iorio

2019

Research and Practice in Thrombosis and Haemostasis

View full text Add to dashboard Cite

Treatment for hemophilia has advanced dramatically over the past 5 decades. Success of prophylactic therapy in preventing bleeding and decreasing associated complications has established a new standard of care. However, with the advent of gene therapy and treatments that effectively mimic sustained coagulation factor replacement, outcome measures that worked well for assessing factor replacement therapies in past clinical trials need to be reassessed. In addition, while therapies have advanced, so has the science of outcome assessment, including recognition of the importance of patient important and patient reported outcomes. This manuscript reviews strengths and limitations of outcome measures used in hemophilia from both a provider and patient perspective.

show abstract

“…Currently, human health studies assess behaviours through a combination of self-reported outcomes [6], in particular patient-reported outcomes (PRO, [6]), and, more recently, patient-generated technology-reported outcomes (TechRO, [6]). Patient-reported outcomes include questionnaires with validated scales that assess individual outcomes momentarily or for a given recall period (e.g., "During the past month, how often have you had trouble sleeping?").…”

Section: Introductionmentioning

confidence: 99%

Co-Calibrating Physical and Psychological Outcomes and Consumer Wearable Activity Outcomes in Older Adults: An Evaluation of the coQoL Method

Manea

Wac

2020

JPM

View full text Add to dashboard Cite

Inactivity, lack of sleep, and poor nutrition predispose individuals to health risks. Patient-Reported Outcomes (PROs) assess physical behaviours and psychological states but are subject of self-reporting biases. Conversely, wearables are an increasingly accurate source of behavioural Technology-Reported Outcomes (TechROs). However, the extent to which PROs and TechROs provide convergent information is unknown. We propose the coQoL PRO-TechRO co-calibration method and report its feasibility, reliability, and human factors influencing data quality. Thirty-nine seniors provided 7.4 ± 4.4 PROs for physical activity (IPAQ), social support (MSPSS), anxiety/depression (GADS), nutrition (PREDIMED, SelfMNA), memory (MFE), sleep (PSQI), Quality of Life (EQ-5D-3L), and 295 ± 238 days of TechROs (Fitbit Charge 2) along two years. We co-calibrated PROs and TechROs by Spearman rank and reported human factors guiding coQoL use. We report high PRO—TechRO correlations (rS≥ 0.8) for physical activity (moderate domestic activity—light+fair active duration), social support (family help—fair activity), anxiety/depression (numeric score—sleep duration), or sleep (duration to sleep—sleep duration) at various durations (7–120 days). coQoL feasibly co-calibrates constructs within physical behaviours and psychological states in seniors. Our results can inform designs of longitudinal observations and, whenever appropriate, personalized behavioural interventions.

show abstract

Montreal Accord on Patient-Reported Outcomes (PROs) use series – Paper 2: terminology proposed to measure what matters in health

Cited by 59 publications

References 35 publications

Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

Hemophilia trials in the twenty‐first century: Defining patient important outcomes

Co-Calibrating Physical and Psychological Outcomes and Consumer Wearable Activity Outcomes in Older Adults: An Evaluation of the coQoL Method

Contact Info

Product

Resources

About