eISSN: 2299-0046
ISSN: 1642-395X
Advances in Dermatology and Allergology/Postępy Dermatologii i Alergologii
Current issue Archive Manuscripts accepted About the journal Editorial board Journal's reviewers Abstracting and indexing Subscription Contact Instructions for authors
SCImago Journal & Country Rank
6/2021
vol. 38
 
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abstract:
Original paper

Assessing quality of life in patients with mastocytosis: development of the disease-specific questionnaire

Natalia Spolak-Bobryk
1
,
Marek Niedoszytko
1
,
Ewa Jassem
1
,
Marta Chełmińska
1
,
Magdalena Lange
2
,
Mikołaj Majkowicz
3
,
Bogusław Nedoszytko
2
,
Judyta Borchet
4

1.
Department of Allergology, Medical University of Gdansk, Gdansk, Poland
2.
Department of Dermatology, Venereology and Allergology, Medical University of Gdansk, Gdansk, Poland
3.
Faculty of Health Sciences, Pomeranian University, Slupsk, Poland
4.
Institute of Psychology, University of Gdansk, Gdansk, Poland
Adv Dermatol Allergol 2021; XXXVIII (6): 1044–1051
Online publish date: 2022/01/11
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Introduction
Appropriate and targeted psychological care, as well as sychoeducation covering the disease causes, symptoms, and their management are crucial elements of the therapeutic process in patients with mastocytosis. This care is based on the identification of problematic areas that are of the greatest importance for patients. The quality of life questionnaires available in Poland are designed for the general population; therefore, they do not encompass the specificity of difficulties experienced by people suffering from mastocytosis. Aim: To develop a questionnaire measuring the quality of life in patients with mastocytosis, and including the issues and symptoms typical for this group.

Material and methods
The study involved 85 patients (57 women and 28 men) suffering from mastocytosis.

Results
The analyses revealed that the Quality of Life in Mastocytosis Scale (QLMS) is a reliable and valid tool for measuring the quality of life, and it takes into account the specific difficulties experienced by patients with mastocytosis. Apart from the measurement of the global quality of life, QLMS offers a deeper assessment of the quality of patient’s lives, including the difficulties in professional life, everyday life, leisure time, or those associated with protective behaviours.

Conclusions
The presented questionnaire completes a gap in quality-of-life studies by allowing to plan psychoeducation and offering a tool for a precise diagnosis of the quality of life in patients with mastocytosis.

keywords:

mastocytosis, quality of life, questionnaire

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