The Impact of Regularly Used Treatments on Daily Life of Cutaneous T-Cell and B-Cell Lymphoma Patients

Abstract

Primary cutaneous lymphoma (PCL) has a significant impact on patients' quality of life (QoL) as several aspects of the disease affect patients' physical and psychosocial wellbeing [1-3]. Early stage mycosis fungoides (MF) patients, the largest group within PCL, generally show slow disease progression and long survival, but spend a large amount of their life receiving treatment [4]. Meanwhile, treatment burden is hardly represented in existing quantitative QoL instruments and so far, qualitative research only briefly touched this topic and never included indolent primary cutaneous B-cell lymphoma (CBCL) or primary cutaneous anaplastic large cell lymphoma (pcALCL) [5, 6].

We conducted semi-structured in-depth interviews in 19 MF/SS (Sézary Syndrome), 2 CBCL and 1 pcALCL patients visiting our outpatient clinic to get a deeper understanding of the challenges and needs across disease stages and PCL subtypes (Table 1). In accordance with previously published qualitative data, CTCL patients experienced diagnostic delay, disease symptoms, multiple consecutive therapies in search for one that worked (Table 2, Q1), shame and a large impact on daily (social) life [5]. Interestingly, indolent CBCL patients also reported feelings of shame and avoidance behavior (Q2). In contrast with previously published reports, the majority of interviewed patients in Belgium found the large psychosocial impact of regularly used treatments an important theme. Patients especially reported a significant impact of treatment with PUVA, interferon-alpha (IFNα), radiotherapy and carmustine ointment on their daily life.

Most IFNα-treated patients described debilitating fatigue and exhaustion (Q3–Q4). Even in an outpatient setting, the frequent injections significantly hampered everyday activities. Patients mentioned not being able to work fulltime, go on holidays or leave their home as easily as before (Q5). Some patients reported IFNα-induced irritability, increased anxiety and panic attacks (Q6). Treatment impact was especially high for carmustine ointment. Patients complained about the product's greasiness, ‘getting in their clothes and bed sheets’ and dreaded having to apply the product every evening (Q7). Several patients found it hard to stay motivated to adhere to treatment, especially when lesions already disappeared (Q8). Because of the toxicity of topical chemotherapy patients slept separately from their partners, which was frequently mentioned as an inconvenience (Q9). Some PUVA-treated patients reported malaise or nausea as an important issue (Q10). Treatment interfered with patients' daily activities as they were expected to undergo this therapy multiple times a week, which made it time-consuming and forced patients to plan their life around it (Q11). Radiotherapy was also considered time-consuming, especially for patients living further away from the hospital. A few patients reported burned skin and pain (Q12). Finally, having to take a ‘large amount of pills’ (Q13) was also frequently reported, especially regarding bexarotene treatment, as concurrent thyroid hormone substitution and lipid-lowering drugs are necessary to counter its side effects.

Analysis of item 18 of recently administered Skindex-29 questionnaires confirmed the importance of this theme in our patients: 21.5% of 28 PCL patients, including 3 CBCL, ‘often’ or ‘always’ worried about therapy side effects. New treatment options such as brentuximab-vedotin and mogamulizumab may be more suitable for some patients, but are only reimbursed in Belgium for CD30 + MF and advanced stage MF/SS respectively [7, 8]. Mechlorethamine gel may solve some practical problems, but is not tolerated by 20.3% of early-stage MF patients [9].

Our findings illustrate the debilitating impact of PUVA, IFNα, radiotherapy and topical chemotherapy on QoL in a significant proportion of CTCL as well as CBCL patients and how this affects treatment adherence. Awareness of challenges that arise in specific treatments and the impact on daily life, may not only guide future drug development, but also creates an opportunity to further support patients and effectively improve QoL through coaching and multidisciplinary psychosocial care [10].

Raaijmakers and Woei-A-Jin had full access to all data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. Concept and design: Meersman, Wolter and Woei-A-Jin. Treating physicians of interviewed patients: Wolter and Busschots. Data collection: Meersman, Neyens, Wolter, Woei-A-Jin. Coding data: Raaijmakers (clinical psychologist) and Woei-A-Jin (hematologist and medical oncologist not involved in the interviewed patient's care). Analysis and interpretation of data: Raaijmakers, Woei-A-Jin, Neyens. Manuscript writing: Raaijmakers and Woei-A-Jin. Critical revision of the manuscript for important intellectual content: All authors. Statistical analysis: Raaijmakers. Obtained funding: Woei-A-Jin. Administrative, technical, or material support: Woei-A-Jin, Meersman, Wolter. Supervision: Woei-A-Jin.

The study was approved by the Ethics Committee of University Hospital Leuven (S63392). All patients in this manuscript have given written informed consent for participation in the study and the use of their de-identified, anonymized, aggregated data and their case details for publication.

A.M.B. received travel support and payments for advisory boards from Recordati and Kyowa Kirin. F.J.S.H.W.-A.-J. received travel support and participated in an educational event from Takeda, and an advisory board from Recordati for which her institution received fees. The other authors report no potential conflicts of interest with regard to this manuscript.