Current measures are not sufficient: an interview-based qualitative assessment of quality of life in cutaneous T-cell lymphoma.

The British Journal of Dermatology
T S BhatA C Musiek

Abstract

Cutaneous T-cell lymphoma (CTCL) negatively impacts quality of life (QoL), but existing QoL questionnaires may not comprehensively reflect patients' experience. To identify the aspects of QoL that are most meaningful to patients with CTCL and to evaluate existing QoL instruments in this context. Semistructured interviews were conducted between May and June 2019 using purposive sampling of patients with CTCL. Data were analysed by an inductive thematic approach using Dedoose Version 8.0.35. One-on-one interviews lasting a median of 43 min were completed by 18 patients [median age 62 years (interquartile range 52-70); 39% advanced-stage (IIB-IV)]. Itch was the most common clinical symptom reported (16 of 18 patients), followed by pain (12 of 18), skin breaks (11 of 18) and skin flaking (10 of 18). Eleven patients reported that their symptoms interfered with sleep, which impacted daily functioning. Patients also noted a lack of understanding of the disease in the community and felt uncertain (12 of 18), depressed (11 of 18), suicidal (four of 18) and hopeless (nine of 18). Nearly all patients (17 of 18) reported a sense of 'otherness' (not feeling 'normal' or 'like themselves'), and most patients (16 of 18) specifically mentioned ...Continue Reading

References

May 1, 1994·Clinical and Experimental Dermatology·A Y Finlay, G K Khan
Nov 13, 2001·The British Journal of Dermatology·C RenziM Braga
Nov 14, 2003·Health and Quality of Life Outcomes·John HorsmanGeorge Torrance
Feb 6, 2004·Journal of the European Academy of Dermatology and Venereology : JEADV·S A BouwhuisM D P Davis
Apr 16, 2004·The Journal of Investigative Dermatology. Symposium Proceedings·Victoria Lewis, Andrew Y Finlay
Feb 5, 2005·Blood·Rein WillemzeChris J L M Meijer
Mar 23, 2005·Archives of Dermatology·Marie-France DemierreDonald Miller
Jul 20, 2007·Archives of Dermatology·Vincent D Criscione, Martin A Weinstock
Jan 6, 2009·The British Journal of Dermatology·F SampognaD Abeni
Aug 25, 2012·Journal of Pain and Symptom Management·Abigail WrightTeresa Beynon
Sep 6, 2013·JAMA Dermatology·Kaveri KorgavkarMartin Weinstock
Feb 14, 2015·The British Journal of Dermatology·H KitchenC Bundy
Jul 15, 2015·Qualitative Health Research·Jean M HunlethAimee S James
Mar 29, 2019·The British Journal of Dermatology·Y R SemenovA C Musiek
Sep 11, 2019·Pediatric Allergy and Immunology : Official Publication of the European Society of Pediatric Allergy and Immunology·Michaela GabesUNKNOWN quality of life working group of the Harmonising Outcome Measures for Eczema (HOME) initiative
Oct 9, 2019·Strahlentherapie und Onkologie : Organ der Deutschen Röntgengesellschaft ... [et al]·Khaled ElsayadHans Theodor Eich
Dec 13, 2019·The British Journal of Dermatology·R Talpur

❮ Previous
Next ❯

Citations

Aug 1, 2021·Journal of the European Academy of Dermatology and Venereology : JEADV·R OttevangerK D Quint
Jan 4, 2022·Journal of Palliative Medicine·Jennifer A SalantAnjali V Desai

❮ 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.