Defining Core Concepts for Health-Related Quality of Life for Patients With Mycosis Fungoides and Sézary Syndrome: A Systematic Literature Review

被引：0

作者：

Asare, Christina ^{[1
]}

Chen, Jennifer ^{[2
]}

Naidoo, Pragna ^{[2
]}

Raymundo, Caroline ^{[2
]}

Tawa, Marianne ^{[3
]}

Khan, Nilufer ^{[4
]}

Olsen, Elise ^{[5
]}

Ottevanger, Rosanne ^{[6
]}

Scarisbrick, Julia ^{[7
]}

Thornton, Susan ^{[8
]}

Kim, Ellen J. ^{[9
]}

Larocca, Cecilia ^{[10
,11
]}

Shinohara, Michi M. ^{[2
,11
]}

机构：

[1] Georgetown Univ, Sch Med, Washington, DC USA

[2] Univ Washington, Dept Dermatol, Seattle, WA 98109 USA

[3] Dana Farber Canc Inst, Boston, MA USA

[4] City Hope Natl Med Ctr, Dept Hematol & Hematopoiet Cell Transplantat, Duarte, CA USA

[5] Duke Univ, Dept Dermatol & Med, Med Ctr, Durham, NC USA

[6] Leiden Univ, Med Ctr, Dept Dermatol, Leiden, Netherlands

[7] Univ Hosp Birmingham, Birmingham, England

[8] Cutaneous Lymphoma Fdn, Warren, MI USA

[9] Univ Penn, Perelman Sch Med, Dept Dermatol, Philadelphia, PA USA

[10] Brigham & Womens Hosp, Dept Dermatol, Boston, MA USA

[11] Fred Hutchinson Canc Ctr, Seattle, WA 98109 USA

来源：

JEADV CLINICAL PRACTICE | 2025年

关键词：

health-related quality of life; mycosis fungoides; patient reported outcome measure; S & eacute; zary syndrome; T-CELL LYMPHOMA; ELECTRON-BEAM THERAPY; SEZARY-SYNDROME; REFRACTORY PRURITUS; MONOCLONAL-ANTIBODY; DENILEUKIN DIFTITOX; ILLNESS PERCEPTION; ORAL BEXAROTENE; OPEN-LABEL; III TRIAL;

D O I：

10.1002/jvc2.70039

中图分类号：

R75 [皮肤病学与性病学];

学科分类号：

100206 ;

摘要：

BackgroundThere is no consensus on how best to assess the impact of living with mycosis fungoides (MF)/S & eacute;zary syndrome (SS) on a patient's quality of life.ObjectivesTo identify all potential concepts that describe disease severity or contribute to health-related quality of life (HRQOL) from patients with MF/SS and their care partners.MethodsA systemic literature review of articles and meeting abstracts published between 2000 and 2022 was conducted. Inclusion criteria were any study that included MF/SS patients or care partners and reported any concept that patients or care partners could use to characterize any aspect of MF/SS. Thematic analysis was completed using NVIVO.ResultsOne hundred and three articles/abstracts met inclusion criteria. Within these studies, 30 existing instruments were utilized. Concepts within these existing instruments fell into the following health component categories: Physical-functional well-being (PF; 50.4%), mental health/emotional well-being (MHE; 26.6%), social well-being (S; 18.3%) or other (O; 4.7%). The most frequently measured concepts by existing instruments were physical mobility (7.5%), itching (7.2%), pain (7.0%) and fatigue (5.2%). One study conducted content validity analysis for an included instrument. Distinct concepts were identified from qualitative studies and novel instruments, and included hair loss, nail changes, cracking/fissuring of the skin, inability to regulate temperature, difficulty with wound dressings, skin infection, skin oozing/weeping/bleeding, pigmentary changes, treatment burden and treatment satisfaction, and care partners' specific concepts. One study conducted content validity analysis for an included instrument.ConclusionsNumerous PROMs have been used to assess HRQOL for patients with MF/SS, with very little content validity analysis. Several concepts identified from qualitative studies and newly developed or piloted instruments are not represented in existing PROMs. Future efforts will include prioritizing candidate core concepts by stakeholders to develop a core domain set that captures the most relevant aspects of MF/SS that impact HRQOL.

引用

页数：13

共 106 条

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