Quality of life in children suffering from headaches: a systematic literature review

Ombashi, S.; Tsangaris, E.; Heeres, A. G.; van Roey, V.; Neuteboom, R. F.; van Veelen-Vincent, M. L. C.; Jansson, K.; Mathijssen, I. M. J.; Klassen, A. F.; Versnel, S. L.

doi:10.1186/s10194-023-01595-0

Cited by 4 publications

(2 citation statements)

References 78 publications

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“…Evidence exists that reduced physical activity, emotional problems and poor social functioning can all account for global disability in the pediatric population with migraines [ 26 , 27 ], supporting the negative correlations observed in this study between scores of PedMIDAS and all domains of PedsQL. However, the magnitude of correlations between the scores of PedMIDAS and the different domains of PedsQL varied.…”

Section: Discussionsupporting

confidence: 84%

Validity and reliability of Arabic version of pediatric migraine disability assessment scale (Child Self-Report versus Parent Proxy-Report): a multi-center study

Magdy,

Hassan,

Mohammed

et al. 2024

J Headache Pain

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Background Pediatric Migraine Disability Assessment (PedMIDAS) is one of the most frequently used questionnaires to assess disability from migraine in pediatric patients. This work aimed to evaluate the validity and test–retest reliability of the Arabic version of the child self-report versus the parent proxy report PedMIDAS. We also aimed to test the agreement between children's and parents' reports of the scale. Methods PedMIDAS was subjected to translation and back-translation, then applied to 112 pediatric patients fulfilling the migraine diagnostic criteria. This cross-sectional study was conducted on two visits, one week apart. At visit 1, the following data were obtained from the included pediatric patients: disease duration, migraine type, current treatment regimen, monthly migraine days (MMD) during the last month preceding the enrollment, and migraine intensity using the visual analogue scale. Then, each child and his parent were independently asked to fill out PedMIDAS and Child Self-Report of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) to test the convergent validity of PedMIDAS. At visit 2, each child was requested to complete PedMIDAS again, and so was the parent to evaluate test–retest reliability. Results Cronbach’s alpha was estimated to be 0.94 for each instrument. For the child-self report PedMIDAS, the average measure intraclass correlation coefficient (ICC) value was 0.992 (95%CI = 0.989–0.995), while it was estimated to be 0.990 for the parent-proxy report with 95%CI = 0.985–0.993, indicating excellent test–retest reliability for both instruments. The child-self report and the parent-proxy report PedMIDAS scores were significantly correlated with MMD, VAS, and all domains of the corresponding PedsQL, supporting convergent validity for both instruments. Agreement between parent and child on disability grading categories of PedMIDAS was substantial (κ = 0.644). Conclusion The Arabic version of PedMIDAS was a valid and reliable instrument to assess disability from migraine in Arabic-speaking pediatric patients with migraine. Parent reports can be valuable as a complement to child reports for a comprehensive assessment of migraine.

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Section: Discussionsupporting

confidence: 84%

Validity and reliability of Arabic version of pediatric migraine disability assessment scale (Child Self-Report versus Parent Proxy-Report): a multi-center study

Magdy,

Hassan,

Mohammed

et al. 2024

J Headache Pain

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“…No specific tools have been developed for measuring outcomes in children [64]. Some PROMs have been adapted for the pediatric population including the assessment of pain intensity, migraine disability, HRQoL and comorbidities (anxiety/depression).…”

Section: Pediatric Patientsmentioning

confidence: 99%

The state of art on the use of patient reported outcomes in migraine

Alpuente,

Torres-Ferrus,

Caronna

et al. 2024

Current Opinion in Neurology

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Purpose of review This review aims to explore the use of patient-reported outcome measures (PROMs) in migraine. Traditionally assessed through specific features, recent adoption of PROMs allows for a more objective and quantifiable evaluation. PROMs, which are standardized questionnaires collecting health information directly from a patients’ perspective, cover various aspects, including migraine specific aspects. The review focuses on delineating the applications and interpretation of commonly used PROMs in migraine research, with an emphasis on their integration in clinical care. Recent findings Generic and migraine-specific PROMs play a crucial role in clinical research, particularly in assessing health-related quality of life, disability, impact, and associated comorbidities. Some of these measures are strongly recommended to be used by the International Guidelines and are, in fact, mandated by the FDA for product labeling. Recently, there has been an expansion in the use of PROMs to assess migraine in diverse populations, in particular pediatric patients. However, the application of these measures in clinical care shows considerable heterogeneity, and some have not been validated specifically for migraine. The existing multitude of PROMs, coupled with ongoing development of new ones to better capture patient concerns, creates complexity in their research and clinical application. To address these challenges, it becomes imperative to streamline their use, focusing on those that are more validated and better aligned with the patients’ perspective including different populations’ needs. Summary The utilization of PROMs in evaluating migraine enables a more holistic assessment, helps quantify the impact of the disease facilitating change measurement, improves communication between healthcare providers and patients and, guides treatment decisions for improved outcomes. However, the increasing number of PROMs questionnaires, underscores the importance of validating these tools for migraine and, the dynamic nature of the disease makes it relevant to decide with whom, why and when these should be used.

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Readability analysis and concept mapping of PROMs used for headache disorders

Hazewinkel,

Gfrerer,

Ashina

et al. 2024

Headache

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ObjectiveTo assess the readability and the comprehensiveness of patient‐reported outcome measures (PROMs) utilized in primary headache disorders literature.BackgroundAs the health‐care landscape has evolved toward a patient‐centric model, numerous PROMs have been developed to capture treatment outcomes in patients with headache disorders. For these PROMs to advance our understanding of headache disorders and their treatment impact, they must be easy to understand (i.e., reading grade level 6 or less) and comprehensively capture what matters to patients with headache. The aim of this study was to (a) assess the readability of PROMs utilized in headache disorders literature, and (b) assess the comprehensiveness of PROMs by mapping their content to a health‐related quality of life framework.MethodsIn this scoping review, recently published systematic reviews were used to identify PROMs used in primary headache disorders literature. Readability analysis was performed at the level of individual items and full PROM using established readability metrics. The content of the PROMs was mapped against a health‐related quality‐of‐life framework by two independent reviewers.ResultsIn total, 22 PROMs (15 headache disorders related, 7 generic) were included. The median reading grade level varied between 7.1 (interquartile range [IQR] 6.3–7.8) and 12.7 (IQR 11.8–13.2). None of the PROMs were below the recommended reading grade level for patient‐facing material (grade 6). Three PROMs, the Migraine‐Treatment Assessment Questionnaire, the Eurolight, and the European Quality of Life 5 Dimensions 3 Level Version, were between reading grade levels 7 and 8; the remaining 19 PROMs were above reading grade level 8. In total, the PROMs included 425 items. Most items (n = 134, 32%) assessed physical function (e.g., work, activities of daily living). The remaining items assessed physical symptoms (n = 127, 30%; e.g., pain, nausea), treatment effects on symptoms (n = 65, 15%; e.g., accompanying symptoms relief, headache relief), treatment impact (n = 56, 13%; e.g., function, side effects), psychological well‐being (n = 41, 10%; e.g., anger, frustration), social well‐being (n = 29, 7%; e.g., missing out on social activities, relationships), psychological impact (n = 14, 3%; e.g., feeling [not] in control, feeling like a burden), and sexual well‐being (n = 3, 1%; e.g., sexual activity, sexual interest). Some of the items pertained to treatment (n = 27, 6%), of which most were about treatment type and use (n = 12, 3%; e.g., medication, botulinum toxin), treatment access (n = 10, 2%; e.g., health‐care utilization, cost of medication), and treatment experience (n = 9, 2%; e.g., treatment satisfaction, confidence in treatment).ConclusionThe PROMs used in studies of headache disorders may be challenging for some patients to understand, leading to inaccurate or missing data. Furthermore, no available PROM comprehensively measures the health‐related quality‐of‐life impact of headache disorders or their treatment, resulting in a limited understanding of patient‐reported outcomes. The development of an easy‐to‐understand, comprehensive, and validated headache disorders–specific PROM is warranted.

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Quality of life in children suffering from headaches: a systematic literature review

Cited by 4 publications

References 78 publications

Validity and reliability of Arabic version of pediatric migraine disability assessment scale (Child Self-Report versus Parent Proxy-Report): a multi-center study

Validity and reliability of Arabic version of pediatric migraine disability assessment scale (Child Self-Report versus Parent Proxy-Report): a multi-center study

The state of art on the use of patient reported outcomes in migraine

Readability analysis and concept mapping of PROMs used for headache disorders

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