title: 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.
  
  
  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.
authors: PsoriSol Clinic for Dermatology, Hersbruck/Nuremberg.
authors: Anna
authors: A
authors: Nowak
authors: Bernhard F
authors: BF
authors: Gibbs
authors: Ulrich
authors: U
authors: Amon
mesh_terms: D000328:Adult; D000553:Ambulatory Care / Q000523:psychology*; D003299:Cooperative Behavior; D057210:Delayed Diagnosis; D005260:Female; D006801:Humans; D033183:Interdisciplinary Communication; D007902:Length of Stay; D008297:Male; D034721:Mastocytosis, Systemic / Q000175:diagnosis / Q000209:etiology / Q000523:psychology* / Q000628:therapy*; D008875:Middle Aged; D010348:Patient Care Team; D017060:Patient Satisfaction; D011787:Quality of Health Care; D011788:Quality of Life / Q000523:psychology; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D053802:Tryptases / Q000097:blood
chemical_list: D053802:Tryptases