Product information and disease description Place of product in therapy Disease description Burden of Microcystic lymphatic malformations

Humanistic burden and health-related quality of life

5 evidence topics · 4 sources

Humanistic burden: tongue involvement

“Functional impairment and cosmetic deformity significantly affect the quality of life of patients with lymphatic malformations of the tongue.” (opens the source at this quote in a new tab)

Long-term health-related quality of life: comparison with population norms

“Overall HRQoL paralleled age-appropriate norms in the general population, but some subgroups had lower levels.” (opens the source at this quote in a new tab)

Patient-reported outcomes: Lymphatic Malformation Function instrument

“a preliminary parent-report assessment designed to measure outcomes in children with cervicofacial lymphatic malformation” (opens the source at this quote in a new tab)

Patient-reported outcomes: functional and symptom impacts in pediatric head and neck lymphatic malformations

“Both adolescent patients and parents of younger children reported significant symptom and functional effects of this disease.” (opens the source at this quote in a new tab)
“Adolescents reported frequent sickness as the domain with greatest impact. Sleep was more affected in adolescents with higher stage lesions. Parents of younger children reported greatest impact on breastfeeding.” (opens the source at this quote in a new tab)
“For adolescents, lesion stage predicted perceived social stigma (controlling for age), whereas increasing age was associated with greater impact from swelling (controlling for stage).” (opens the source at this quote in a new tab)

Gap between existing burden measures and reported impacts

“Current disease burden measures, treatment decision pathways, and outcome measures do not consider such effects, although these problems lead patients and parents to seek medical care.” (opens the source at this quote in a new tab)