Fatigue perception in a cohort of children with chronic immune thrombocytopenia and their caregivers using the PedsQL MFS: Real‐life multicenter experience of the Italian Association of Pediatric Hematology and Oncology (AIEOP)

Abstract

BackgroundFatigue is an important clinical and psychological aspect for a significant number of children affected by immune thrombocytopenia (ITP). To date, few studies have explored fatigue and its relationship with chronic ITP in pediatric age. The aim of the present multicentric pilot study is to determine fatigue perception in a large group of children with chronic ITP and their caregivers using the PedsQL Multidimensional Fatigue Scale (PedsQL MFS), and to compare the results with those of healthy control subjects.ProcedureChildren with chronic ITP aged 5‐18 years and/or caregivers of children aged 2‐18 years were enrolled. Child/adolescent self‐report was used for patients aged 5‐18 years, and parent proxy‐report for patients aged 2‐18 years. The questionnaire was offered as online survey. PedsQL MFS is composed of 18 items covering three dimensions: General Fatigue Scale, Sleep/Rest Fatigue Scale, and Cognitive Fatigue Scale.ResultsOne hundred ninety‐one patients affected by chronic ITP and 248 caregivers answered the PedsQL MFS. We have highlighted that lower values of PedsQL MFS scores are obtained in the 13‐18 age group. Moreover, sleep/rest fatigue domain appears to be more compromised in all age groups. For all PedsQL MFS scores, pediatric patients with chronic ITP and their caregivers reported statistically significant worse fatigue than healthy children.ConclusionsThis study suggests that fatigue is relevant among children and adolescents affected by chronic ITP. The PedsQL MFS represents an adequate instrument for measuring fatigue in patients with chronic ITP. Therefore, symptoms of fatigue should be routinely assessed in clinical practice.

Expert Report on Immune Thrombocytopenia: Current Diagnostics and Treatment – Recommendations from an Expert Group from Austria, Germany, and Switzerland

“…19.9 Quality of Life and Fatigue ITP patients have poor health-related quality of life, similar to that of cancer patients and sometimes even worse [62,68,140,141]. This is also true for pediatric ITP [142,143]. The quality of life is worse at the beginning of the disease, when bleeding symptoms are frequent and the patient and family members are still learning how to cope with the disorder, but it improves with time and experience.…”

Tele-neuropsychological assessment tools in Italy: a systematic review on psychometric properties and usability

“…Lassandro et al [ 25 ] administered a web version of the Paediatric Quality of Life Inventory Multidimensional Fatigue Scale (PedsQL MFS) [ 44 , 45 ] to a sample of 191 paediatric patients (mean age 11 years) with chronic immune thrombocytopenia (ITP) and to 248 caregivers. The PedsQL MFS is a self- and parent-report tool investigating fatigue along different dimensions, including cognition.…”

Expertenreport Immunthrombozytopenie – Aktuelle Diagnostik und Therapie

“…Lebensqualität und Fatigue ITP-Patient*innen haben eine Lebensqualität, die der von Krebspatient*innen nahekommt, z.T. sogar schlechter ist [62,68,140,141], auch pädiatrische Patient*innen [142,143]. Dies gilt besonders für den Anfang der Erkrankung, wenn Blutungssymptome noch häufig sind und wenn der/die Patient*in bzw.…”