Pre-inpatient evaluation on quality and impact of care in systemic mastocytosis and the influence of hospital stay periods from the perspective of patients: a pilot study

Abstract

Background: The quality and impact of care in patients with mastocytosis has not yet been investigated in detail.

Patients and methods: Here, we report monocentric findings of a retrospective questionnaire from 84 adult inpatients with mastocytosis regarding the quality and impact of pre-inpatient clinical care after a period of inpatient stay. It was possible to analyse the data derived from 50 patients (40 female, 10 male; 74 % with systemic mastocytosis, 26 % with cutaneous mastocytosis).

Results: Correct diagnoses were discovered to have taken over 2 years for 68 % of patients (up to 11 years). 58 % of patients required the consultation of three or more clinicians until the final diagnosis was reached; 3 patients consulted more than 9 doctors. The correct diagnosis was finally made in 94 % of patients by a dermatologist. The main symptoms expressed by the patients were skin disorders (92 %), itching (66 %) and exhaustion (48 %). From a patient perspective, the main triggering factors given were food and food additives (63 %), emotional stress (46 %) and physical exertion (44 %). Interdisciplinary inpatient treatment provided the patients with a better understanding of their disease in 90 %. Outpatient supervision was performed mainly by dermatologists (46 %), family doctors (40 %) and other clinicians (14 %). 22 % required the assistance of various doctors for their outpatient care. Only 14 % of patients reported that their daily life was relatively unaffected by mastocytosis. 22 % felt the disease slightly affected their quality of life, 20 % moderately, 26 % strongly and 18 % said the disease had a very strong impact on their quality of life. 82 % of patients browsed the Internet in order to find information regarding mastocytosis, although for 26 % this information was not deemed useful and 10 % felt rather unsettled.

Conclusions: Patients with severe mastocytosis requiring hospitalization reported clear restrictions in their daily life. Such patients require an improved interdisciplinary diagnostic approach and therapy.