Development and validation of the mastocytosis quality of life questionnaire: MC-QoL

Allergy
Frank SiebenhaarKarsten Weller

Abstract

Mastocytosis is a heterogeneous disease characterized by a clonal expansion of mast cells in various organs. The vast majority of patients affected suffer from signs and symptoms caused by mediator release from mast cells. Although the disease burden is high, there is currently no specific instrument to measure health-related quality of life (HRQoL) impairment in patients with mastocytosis. The aim of this study was to develop and validate a disease-specific tool to assess HRQoL impairment in patients with cutaneous and indolent systemic mastocytosis, the Mastocytosis Quality of Life Questionnaire (MC-QoL). Sixty-two potential MC-QoL items were developed in a combined approach consisting of semi-structured patient interviews, expert input and literature research. Item selection was performed by impact analysis with 76 patients and a final review for face validity. The resulting MC-QoL was tested for validity, reliability and influence factors. In parallel, an US American-English version of the MC-QoL was developed. A total of 158 patients (41 CM, 41 MIS and 76 ISM) took part in the MC-QoL validation study. The final 27-item questionnaire was found to have a four-domain structure ('symptoms', 'emotions', 'social life/functioning...Continue Reading

References

May 1, 1994·Clinical and Experimental Dermatology·A Y Finlay, G K Khan
Jun 6, 1996·Health Policy·R Brooks
May 30, 2001·Leukemia Research·P ValentJ M Bennett
Oct 13, 2006·Health and Quality of Life Outcomes·UNKNOWN U.S. Department of Health and Human Services FDA Center for Drug Evaluation and ResearchUNKNOWN U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health
Mar 16, 2013·Acta Dermato-venereologica·Karoline KrauseMarcus Maurer
Sep 21, 2013·Expert Opinion on Pharmacotherapy·Juan Carlos CardetMin Jung Lee
Oct 22, 2013·Lancet·Nadine ReiterFrank Siebenhaar
Oct 30, 2013·Clinical and Experimental Allergy : Journal of the British Society for Allergy and Clinical Immunology·T GülenG Nilsson
Feb 14, 2014·The Journal of Allergy and Clinical Immunology·Karsten WellerMarcus Maurer
Feb 26, 2014·The Journal of Allergy and Clinical Immunology. in Practice·Susan JenningsCem Akin
Apr 22, 2014·Immunology and Allergy Clinics of North America·Knut Brockow
Apr 22, 2014·Immunology and Allergy Clinics of North America·Frank SiebenhaarSigurd Broesby-Olsen
Jun 21, 2014·Current Allergy and Asthma Reports·A MatitoL Escribano
Jul 22, 2014·Clinical and Experimental Allergy : Journal of the British Society for Allergy and Clinical Immunology·T GülenG Nilsson
Aug 6, 2014·The Journal of Allergy and Clinical Immunology·Sigurd Broesby-OlsenUNKNOWN Odense Research Centre for Anaphylaxis
Apr 1, 2015·Clinical and Experimental Allergy : Journal of the British Society for Allergy and Clinical Immunology·M Serra-PagesF de Mora

❮ Previous
Next ❯

Citations

Sep 30, 2017·Expert Review of Clinical Pharmacology·Sabine KayserRichard F Schlenk
Feb 7, 2018·Allergy·F SiebenhaarK Weller
Jan 10, 2018·Journal der Deutschen Dermatologischen Gesellschaft = Journal of the German Society of Dermatology : JDDG·Nicola Wagner, Petra Staubach
Jan 10, 2018·Journal der Deutschen Dermatologischen Gesellschaft = Journal of the German Society of Dermatology : JDDG·Nicola Wagner, Petra Staubach
Dec 13, 2016·Current Treatment Options in Allergy·Merel C OnnesJoanne N G Oude Elberink
Jan 26, 2018·Clinical and Experimental Allergy : Journal of the British Society for Allergy and Clinical Immunology·J RuftS Altrichter
Oct 12, 2020·The Australasian Journal of Dermatology·Cosimo Di RaimondoLuca Bianchi
Dec 22, 2020·The Journal of Allergy and Clinical Immunology. in Practice·David FuchsPeter Valent
Mar 7, 2021·Orphanet Journal of Rare Diseases·Fatma JendoubiCristina Bulai Livideanu
May 19, 2021·Journal of Health Psychology·Jennifer Nicoloro SantaBarbara, Marci Lobel
May 10, 2021·The Journal of Allergy and Clinical Immunology. in Practice·Stephanie PulferAlexander Zink
Jun 22, 2021·Annals of Allergy, Asthma & Immunology : Official Publication of the American College of Allergy, Asthma, & Immunology·Jennifer Nicoloro-SantaBarbaraMarci Lobel
Jan 29, 2020·Actas dermo-sifiliográficas·M Bertolín-ColillaA M Giménez-Arnau

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.