Health-Related Quality of Life and Influencing Factors in Adults with Nonadvanced Mastocytosis—A Cross-Sectional Study and Qualitative Approach

Stephanie Pulfer, Stefanie Ziehfreund, Julia Gebhard, Benedikt Hindelang, Tilo Biedermann, Knut Brockow, Alexander Zink

Research output: Contribution to journalArticlepeer-review

17 Scopus citations

Abstract

Background: Mastocytosis comprises a heterogeneous group of disorders characterized by an accumulation of mast cells in 1 or more organs. Symptoms range from mild complaints to severe and life-threatening events. Impact on quality of life seems to vary widely, but influencing factors are poorly understood so far. Objective: To examine impairments, psychological burden, health-related quality of life (HRQOL), and possible influencing factors in patients with mastocytosis. Methods: In semistructured telephone interviews, patients provided information on impairments in everyday life and psychological burden caused by mastocytosis. HRQOL was measured using the Mastocytosis Quality of Life (MC-QoL) questionnaire. Clinical data were collected from patient files. Results: A total of 101 adult patients with mastocytosis (74.3% women; mean age, 47.7 ± 13.5 years) were included. Half of the interviewed patients (50.6%) reported disease-related impairments in everyday life, and 42.4% stated a psychological burden. MC-QoL questionnaire scores showed a broad distribution, with a mean total score at a “mild” impairment level (mean total score, 34.7 ± 22.5). One-third of patients felt moderately (22.8%) or severely (13.9%) impaired, whereas one-third reported no impairment at all (30.7%). Symptoms of mast cell activation and perceived food intolerance had the highest impact on HRQOL. Higher age, higher body mass index, higher tryptase level, and longer duration of symptoms, as well as current drug therapy and pathological bone density, were each associated with reduced HRQOL. Conclusions: A high level of suffering and strong associations between impairments and symptom-related factors indicate the importance of addressing patients' concerns and adequate symptom management in mastocytosis.

Original languageEnglish
Pages (from-to)3166-3175.e2
JournalJournal of Allergy and Clinical Immunology: In Practice
Volume9
Issue number8
DOIs
StatePublished - Aug 2021

Keywords

  • Adults
  • Burden
  • Health
  • Impairment
  • Influencing factors
  • Mast cell disorders
  • Mastocytosis
  • Quality of life
  • Symptoms

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