Integrating Patient‐Reported Outcomes Within Routine Hepatology Care: A Prompt to Action

Younossi, Zobair M.

doi:10.1002/hep.31550

Cited by 9 publications

(6 citation statements)

References 43 publications

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“…Capturing domains of importance to patients not only adds value to discussions between patients and their clinicians but also provides more meaningful outcomes to follow. [48][49][50] Also relevant to the implementation of HRQOL in clinical and research practice, PROMIS tools are available in a multitude of languages with international, ongoing efforts to expand the languages offered. [51] Such efforts support the inclusion of HRQOL scores for minority patients who often are at the highest risk for liver disease and improve the diversity of participants who can be enrolled into clinical trials using PROs and/or HRQOL as an outcome.…”

Section: Discussionmentioning

confidence: 99%

PROMIS Profile-29 is a valid instrument with distinct advantages over legacy instruments for measuring the quality of life in chronic liver disease

et al. 2023

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Background and Aims: The Patient-Reported Outcomes Measurement Information System (PROMIS) is increasingly used to measure health-related quality of life, yet, it has not been well-studied in chronic liver disease (CLD). This study compares PROMIS Profile-29 to Short-Form Health Survey (SF-36) and Chronic Liver Disease Questionnaire (CLDQ) in patients with CLD. Approach and Results: In all, 204 adult outpatients with CLD completed PROMIS-29, CLDQ, SF-36 and usability questionnaires. Mean scores were compared between groups, the correlation between domain scores was assessed, and floor/ceiling effects were calculated. Etiologies of CLD were NAFLD (44%), hepatitis C (16%), and alcohol (16%). Fifty-three percent had cirrhosis and 33% were Child-Pugh B/C with a mean model for end-stage liver disease score of 12.0. In all 3 tools, the poorest scores were in physical function and fatigue. The presence of cirrhosis or complications was associated with worse scores in most PROMIS Profile-29 domains, indicating known group validity. Strong correlations (r ≥ 0.7) were present between Profile-29 and SF-36 or CLDQ domains measuring similar concepts, indicating strong convergent validity. Profile-29 was completed faster than SF-36 and CLDQ (5.4 ± 3.0, 6.7 ± 3.3, 6.5 ± 5.2 min, p = 0.003) and rated equally on usability. All CLDQ and SF-36 domains reached the floor or ceiling, while none were noted for Profile-29. These floor/ceiling effects were magnified when assessed in those with and without cirrhosis, indicating the improved depth of measurement by Profile-29. Conclusions: Profile-29 is a valid, more efficient, well-received tool that provides an improved depth of measurement when compared to SF-36 and CLDQ and, therefore, an ideal tool to measure general health-related quality of life in CLD.

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Section: Discussionmentioning

confidence: 99%

PROMIS Profile-29 is a valid instrument with distinct advantages over legacy instruments for measuring the quality of life in chronic liver disease

et al. 2023

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“…The first step in changing this model is to measure patient‐reported outcomes (PROs). Advancements in measurement science have demonstrated that PROs can act as supplements to clinical markers for a comprehensive assessment of disease burden, diagnosis, and treatment effectiveness 30–32. PROs capture patient‐generated data that include assessment of patients' well‐being, symptoms, function (physical and emotional), and distress in a standardized format 33,34.…”

Section: Element #2: Measuring and Incorporating Meaningful Patient‐r...mentioning

confidence: 99%

“…Advancements in measurement science have demonstrated that PROs can act as supplements to clinical markers for a comprehensive assessment of disease burden, diagnosis, and treatment effectiveness. [30][31][32] PROs capture patient-generated data that include assessment of patients' well-being, symptoms, function (physical and emotional), and distress in a standardized format. [33,34] PROs are increasingly being considered as the most direct measure of success for high quality PCC.…”

Section: Element #2: Measuring and Incorporating Meaningful Patient-r...mentioning

confidence: 99%

Patient‐centered care: Key elements applicable to chronic liver disease

et al. 2022

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Chronic liver disease (CLD) is a progressive illness with high symptom burden and functional and cognitive impairment, often with comorbid mental and substance use disorders. These factors lead to significant deterioration in quality of life, with immense burden on patients, caregivers, and healthcare. The current healthcare system in the United States does not adequately meet the needs of patients with CLD or control costs given the episodic, reactive, and fee-for-service structure. There is also a need for clinical and financial accountability for CLD care. In this context, we describe the key elements required to shift the CLD care paradigm to a patient-centered and value-based system built upon the Porter model of value-based health care. The key elements include (1) organization into integrated practice units, (2) measuring and incorporating meaningful patientreported outcomes, (3) enabling technology to allow innovation, (4) bundled care payments, (5) integrating palliative care within routine care, and (6) formalizing centers of excellence. These elements have been shown to improve outcomes, reduce costs, and improve overall patient experience for other chronic illnesses and should have similar benefits for CLD. Payers need to partner with providers and systems to build upon these elements and help align reimbursements with patients' values and outcomes. The national organizations such as the American Association for Study of Liver Diseases need to guide key stakeholders in standardizing these elements to optimize patient-centered care for CLD.

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“…4 It is a common patient-reported outcome (PRO) and established measure in liver disease clinical trials. 5,6 Since integrating PRO in routine care for patients with CLD may improve patient care, 7 assessment of HRQOL as a PRO may be essential to good management of CLD.…”

Section: Introductionmentioning

confidence: 99%

Chronic liver disease questionnaire to manage patients with chronic liver diseases

Tajiri

Futsukaichi

Murayama

et al. 2022

Hepatology Research

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Background and Aims Although patients with chronic liver disease (CLD) usually show few symptoms, they exhibit decreased health‐related QOL (HRQOL) with occurrence complications including hepatocellular carcinoma (HCC). Health‐related QOL is an important indicator in the management of CLD. The Chronic Liver Disease Questionnaire (CLDQ) was established as a tool for assessment of HRQOL. In this study, we evaluate its usefulness for the management of daily clinical practice. Methods Patients (N = 190, median age 70 years old) treated between 2016 and 2019 were registered and prospectively followed‐up with annual CLDQ. Associations of liver function and development of factors for admission or death were evaluated. Results Of the 190 patients registered, median age 70 years old, 140 were Child‐A, 121 were Fib‐4 index >2.67 and showed 80 HCC. All 6 domains including Systemic Symptoms (SS) were negatively correlated with Child‐Pugh score more than with albumin‐bilirubin score and Fib‐4 index. A hundred four admission events and 49 deaths were found during observation period, and median event‐free survival was 34.3 months. Treatment for HCC was the most frequent cause of admission, and 37 liver‐related deaths were found. Systemic Symptoms score 2 years after registration was decreased in both HCC‐ and non‐HCC cohort. Systemic Symptoms decreased and SS < 4 might be predictive for event occurrence. Conclusions CLDQ is useful to assess HRQOL in patients with CLD and is well correlated with liver function especially Child‐Pugh. Chronic Liver Disease Questionnaire might be useful to predict the prognosis of CLD and can be a tool of management in clinical practice.

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Integrating Patient‐Reported Outcomes Within Routine Hepatology Care: A Prompt to Action

Abstract: PROs have been increasingly used to measure liver disease burden, assess linkage with clinical characteristics, and assess treatment efficacy. A comprehensive review discusses the measurement properties such aRtICle INFoRMatIoN:

Cited by 9 publications

References 43 publications

PROMIS Profile-29 is a valid instrument with distinct advantages over legacy instruments for measuring the quality of life in chronic liver disease

PROMIS Profile-29 is a valid instrument with distinct advantages over legacy instruments for measuring the quality of life in chronic liver disease

Patient‐centered care: Key elements applicable to chronic liver disease

Chronic liver disease questionnaire to manage patients with chronic liver diseases

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