The dual burden of a rare cancer: psychosocial impact of disease symptoms and unmet care needs in cutaneous T-cell lymphoma

Introduction Cutaneous T-cell lymphoma (CTCL) is a rare, chronic cancer with different stages and the risk for systemic involvement. Although quantitative data show that the disease negatively impacts patients’ quality of life (QoL), in-depth qualitative research into patients’ daily lives and care experiences is limited. This study aims to explore patients’ experiences along the full care pathway, (unmet) needs, and health-related quality of life (HRQoL) in Germany, with a special focus on the psychosocial impact of living with this rare cancer. Methods In a qualitative study, 19 semi-structured interviews were conducted between October 2024 and February 2025 (median duration 47 min). Patients aged 35 to 80 years (11 female, 8 male) were recruited using purposive sampling through a skin cancer center and two German support groups, representing 9 centers across Germany. Analysis followed Kuckartz’s qualitative content analysis approach. Results Most patients experienced HRQoL impairment across physical, psychological and social domains. Common impacts included pruritus and sleep disturbances, social withdrawal due to visible skin changes, stigmatization experiences, and psychological burden related to prognostic concerns and altered self-perception. Quality of care emerged as a factor influencing HRQoL: adequate care was perceived as supportive for coping with the disease and psychosocial well-being, while unmet care needs often created an additional burden. Major care challenges included diagnostic delays, insufficient specialized knowledge, fragmented care, trivialization of the disease and inadequate information provision. Both early- and advanced-stage patients showed HRQoL impairment, but with different patterns: patients in early stages primarily experienced psychosocial burden due to unmet care needs, while advanced-stage patients reported greater physical symptom burden. Conclusion Patients with CTCL face a dual psychosocial burden from disease-specific impairments and care challenges due to the disease’s rarity. The latter may be prevented through specialized, coordinated care using person-centered approaches. Understanding patients’ experiences and (unmet) needs is essential for developing supportive care pathways. Positive care experiences reported in this study provide valuable insights for clinical practice. Future research should validate these findings across different healthcare systems and incorporate them into CTCL-specific HRQoL measurement tools.