Common patient-reported outcomes across ICHOM Standard Sets: the potential contribution of PROMIS®

Terwee, Caroline B.; Zuidgeest, Marloes; Vonkeman, Harald E.; Cella, David; Haverman, Lotte; Roorda, Leo D.

doi:10.1186/s12911-021-01624-5

Cited by 34 publications

(25 citation statements)

References 49 publications

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“…We included 13 self-report measures in this review, including the PROMIS questionnaires assessing Paediatric Global Health. While the latter assess general self-rated health rather than QoL, increasing interest in the system of PROMIS measures as a resource to help with harmonising the use of self-report measures across different conditions and outcome domains led us to include these alongside designated QoL measures [ 40 ].…”

Section: Resultsmentioning

confidence: 99%

Readability of Commonly Used Quality of Life Outcome Measures for Youth Self-Report

Krause

Jacob

Szatmári

et al. 2022

IJERPH

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Self-report measures are central in capturing young people’s perspectives on mental health concerns and treatment outcomes. For children and adolescents to complete such measures meaningfully and independently, the reading difficulty must match their reading ability. Prior research suggests a frequent mismatch for mental health symptom measures. Similar analyses are lacking for measures of Quality of Life (QoL). We analysed the readability of 13 commonly used QoL self-report measures for children and adolescents aged 6 to 18 years by computing five readability formulas and a mean reading age across formulas. Across measures, the mean reading age for item sets was 10.7 years (SD = 1.2). For almost two-thirds of the questionnaires, the required reading age exceeded the minimum age of the target group by at least one year, with an average discrepancy of 3.0 years (SD = 1.2). Questionnaires with matching reading ages primarily targeted adolescents. Our study suggests a frequent mismatch between the reading difficulty of QoL self-report measures for pre-adolescent children and this group’s expected reading ability. Such discrepancies risk undermining the validity of measurement, especially where children also have learning or attention difficulties. Readability should be critically considered in measure development, as one aspect of the content validity of self-report measures for youth.

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Section: Resultsmentioning

confidence: 99%

Readability of Commonly Used Quality of Life Outcome Measures for Youth Self-Report

Krause

Jacob

Szatmári

et al. 2022

IJERPH

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“…The inclusion of anxiety and depression outcomes in many ICHOM Standard Sets shows that measuring anxiety and depression is relevant for many patient groups and persons without diseases, and not only those with mental disorders [ 6 , 7 ]. In the Standard Set for Overall Adult Health, it is advocated to measure anxiety and depression via the PROMIS Scale v1.2 –Global Health [ 69 ], resulting in a global mental health score [ 70 ], for which Dutch reference values recently have been published [ 48 ].…”

Section: Discussionmentioning

confidence: 99%

“…In the Standard Set for Overall Adult Health, it is advocated to measure anxiety and depression via the PROMIS Scale v1.2 –Global Health [ 69 ], resulting in a global mental health score [ 70 ], for which Dutch reference values recently have been published [ 48 ]. In the other 16 Standard Sets that include anxiety and depression, a range of PROMs is advocated, including disease-specific PROMs, cancer-specific PROMs, anxiety/depression-specific PROMs and generic PROMs [ 6 , 7 ]. A more universal and standardized approach to measuring anxiety and depression will facilitate outcome measurement in clinical practice and comparisons of scores across patient groups [ 14 , 15 ].…”

Section: Discussionmentioning

confidence: 99%

“…The importance of measuring anxiety and depression is reflected in the widespread inclusion of both outcomes in Standard Sets for major medical conditions by the International Consortium for Health Outcome Measurement (ICHOM) [ 6 ]. Currently, anxiety and depression are included in 16 out of 28 Standard Sets, thereby being among the most commonly included outcomes [ 7 ].…”

Section: Introductionmentioning

confidence: 99%

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Towards standardization of measuring anxiety and depression: Differential item functioning for language and Dutch reference values of PROMIS item banks

Elsman

Flens²,

Beurs

et al. 2022

PLoS ONE

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Introduction The outcomes anxiety and depression are measured frequently by healthcare providers to assess the impact of a disease, but with numerous instruments. PROMIS item banks provide an opportunity for standardized measurement. Cross-cultural validity of measures and the availability of reference values are prerequisites for standardized measurement. Methods PROMIS Anxiety and Depression item banks were completed by 1002 representative Dutch persons. To evaluate cross-cultural validity, data from US participants in PROMIS wave 1 were used and differential item functioning (DIF) was investigated, using an iterative hybrid of logistic regression and item response theory. McFadden’s pseudo R2-change of 2% was the critical threshold. The impact of any DIF on full item banks and short forms was investigated. To obtain Dutch reference values, T-scores for anxiety and depression were calculated for the complete Dutch sample, and age-group and gender subpopulations. Thresholds corresponding to normal limits, mild, moderate and severe symptoms were computed. Results In both item banks, two items had DIF but with minimal impact on population level T-scores for full item banks and short forms. The Dutch general population had a T-score of 49.9 for anxiety and 49.6 for depression, similar to the T-scores of 50.0 of the US general population. T-scores for age-group and gender subpopulations were also similar to T-scores of the US general population. Thresholds for mild, moderate and severe anxiety and depression were set to 55, 60 and 70, identical to US thresholds. Conclusions The limited number of items with DIF and its minimal impact, enables the use of standard (US) item parameters and comparisons of scores between Dutch and US populations. The Dutch reference values provide an important tool for healthcare professionals and researchers to evaluate and interpret symptoms of anxiety and depression, stimulating the uptake of PROMIS measures, and contributing to standardized outcome measurement.

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“…This will proceed in collaboration with International Consortium for Health Outcomes Measurements (ICHOM) and KLIK (a Dutch initiative enabling longterm follow-up of quality of life parameters in children and parents/ caregivers) and in cooperation with other groups specialized in value-based health-care development and implementation. 33,34 • All Dutch Hemophilia Treatment Centers, EAHAD-certified, and also accredited European Reference Network (ERN)/EuroBloodNet members have joined forces in SYMPHONY. Therefore, crossborder health-care potential and knowledge utilization and dissemination both nationally and in Europe is able to take place.…”

Section: Study Population(s)mentioning

confidence: 99%

SYMPHONY consortium: Orchestrating personalized treatment for patients with bleeding disorders

Cnossen

Moort

Reitsma

et al. 2022

Journal of Thrombosis and Haemostasis

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Background: Treatment choices for individual patients with an inborn bleeding disorder are increasingly challenging due to increasing options and rising costs for society.We have initiated an integrated interdisciplinary national research program. Objectives:The SYMPHONY consortium strives to orchestrate personalized treatment in patients with an inborn bleeding disorder, by unraveling the mechanisms behind interindividual variations of bleeding phenotype.

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Common patient-reported outcomes across ICHOM Standard Sets: the potential contribution of PROMIS®

Cited by 34 publications

References 49 publications

Readability of Commonly Used Quality of Life Outcome Measures for Youth Self-Report

Readability of Commonly Used Quality of Life Outcome Measures for Youth Self-Report

Towards standardization of measuring anxiety and depression: Differential item functioning for language and Dutch reference values of PROMIS item banks

SYMPHONY consortium: Orchestrating personalized treatment for patients with bleeding disorders

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