Anal cancer is a rare and under-researched malignancy, leading to limited understanding of patients’ experiences and potentially insufficiently tailored care. This study explored the health-related quality of life (HRQoL) and healthcare interactions of people with anal cancer. Patients with confirmed diagnosis took part in semi-structured interviews, supplemented by two European Organisation for Research and Treatment of Cancer (EORTC) HRQoL questionnaires. Data were analysed using Interpretative Phenomenological Analysis and organized into themes. Twenty-one patients (71% female; mean age of 62 years) from five countries were included. HRQoL challenges were identified across four phases: illness onset, diagnosis, treatment, and life beyond treatment. Key themes included misdiagnosis, not being taken seriously, and emotional and social disruptions. Additional themes involved stigma, embarrassment, strain on loved ones, and healthcare experiences. Defecation problems were especially burdensome, beginning at onset, intensifying during treatment, and persisting as a chronic issue affecting well-being. Patients described coping strategies and sometimes reframed their experiences positively, expressing gratitude for support received. Questionnaire findings aligned with patients’ reports of prominent physical symptoms. Anal cancer remains highly stigmatized, creating complex physical, emotional, and social challenges. Individualized care and extended psychosocial and practical support beyond treatment are essential to improve HRQoL and dignity in survivorship.
Moura et al. (Tue,) studied this question.