8 CUTANEOUS LYMPHOMA FOUNDATION lated fatigue, worry over disease worsening, hopelessness or depression with having MF/SS, frustration over the unpredictability of the illness, symptom severity, relationship interference, limitation on daily activities, and burdensome nature of treatment, among others. The complete 12-itemMF/SS-CTCLQoL instrument is available here (pg 9) and may also be accessed online.3 The items are self-scored on a scale from 1-5, with a score of 1 indicating no impact and a score of 5 indicating maximal, negative impact on QoL. For health care providers and patients alike, this rigorous development process helps to confirm that the MF/SS-CTCLQoL instrument will bring all of us closer to the conversations we need to have surrounding the impact of QoL for patients and families living with cutaneous lymphomas. To further contribute to the body of knowledge on QoL in MF/SS-CTCL, an extensive, systematic review of the literature on QoL in CTCL was reported in 2021 in the Journal of the European Academy of Dermatology and Venereology.6 Using the capability and power of multiple databases, such as PubMed, Embase, PsycINFO, andWeb of Science, 24 studies were compiled and categorized that involved either standardized instruments or qualitative interviews analyzing the QoL in MF/SS patients. It was found that 18 different questionnaires were used that looked at a wide-range of issues focusing on dermatology, cancer, or generic QoL issues. Of the 24 total studies examined, four of them utilized a qualitative, interview-based or semi-structured method (as opposed to a standardized instrument) to better understand QoL in both early and late stage patients with MF/SS-CTCL. This extensive review revealed how QoL studies around the globe contribute to an improved understanding of the impact CTCL has on the people diagnosed with, and affected by it. The authors conclude that MF/SS-CTCL affects individuals differently within both early and advanced stages of the illness, but there is no doubt of the impact the illness can have on QoL. QoL in the physical, emotional, functional, and social aspects of a person’s life are variably affected; however, the studies corroborated findings that an advanced stage of disease is more directly related to a worsened QoL.6 It is both a worthy challenge and goal for health care providers, patients, and care partners to prioritize QoL, keeping it front and center in the treatment plan for MF/SS-CTCL, with the mutual goal of effective treatments alongside improved quality of life. As a patient or care partner, perhaps you can use one or both of the assessment tools shared in this two-part series as a point of reference to begin a discussion with your physician, nurse practitioner, physician assistant, and nurse. Don’t hesitate to talk about the QoL issues that affect you and your loved ones’ lives, such as your symptoms, your treatments and responses, your financial well-being, your work, your relationships, and your daily functioning. It is important to keep in mind that referrals to social workers, pain management , wound care specialists, financial counselors, or psychologists may have a role in the holistic approach to your care. In short, all the pieces that make up who you are and contribute to your life, your happiness, and your general well-being are important in patient-centered care. Quality of life: keep it front and center as you navigate the challenges of living with CTCL. Sue McCann, MSN, RN, DNC References 1 In Part 1 of this topic, one research study that explored QoL based upon qualitative interviews with people diagnosed with and treated for CL was discussed.4 Please refer to the Cutaneous Lymphoma Foundation Forum, Issue 3 (2022) pgs. 1 and 8 to review that discussion if needed. 2 Online access to the original article is available at http://www.jmir.org This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. Copyright©Stacey McCaffrey, Ryan A. Black, Mitchell Nagao, Marjan Sepassi, Gaurav Sharma, Susan Thornton, Youn H Kim, Julia Braverman. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 07.01.2019 3 The MF/SS-CTCL QoL questionnaire may be opened at this link: jmir_v21i1e11302_app1.pdf. 4 Bhat T, Herbosa B, RosenbergA, Sogade B, Jeffe D, Mehta-Shah N, SemenovY, and MusiekA. Current measures are not sufficient: an interview-based qualitative assessment of quality of life in cutaneous t-cell lymphoma. Br J Dermatol. 2021;184(2):310-318. Doi:10.1111/bjd.19298. 5 McCaffrey S, Black R, Nagao M, Seppassi M, Sharma G, Thornton S, KimY, and Braverman J. Measurement of Quality of Life in Patients with Mycosis Fungoides/Sézary Syndrome Cutaneous T-Cell Lymphoma: Development of an Electronic Instrument. J Med Internet Res. 2019;21(1) doi: 10.2196/11302 6 Ottevanger, R, Beugen, S, Evers, A, Willemze, R, Vermeer, M, and Quint, K. Quality of life in patients with mycosis fungoides and Sezary Syndrome: a systematic review of the literature. JEADV. 2021; 35, 2377-2387 doi: 10.1111/jdv.17570 Quality of Life...continued from pg 1
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