Patients’ perspective in anal cancer

The high chance for an anal cancer patient to be a long-term survivor stresses the importance of quality of life (QoL) after treatment. Radiation therapy targeting the anal canal can impair anorectal, urinary, and sexual functions. Patients’ viewpoints regarding their overall care experiences are aimed at improving information for both patients and healthcare providers to address their unmet needs. This review examines patient perspectives from diagnosis through survivorship, encompassing physical and psychological impacts, side-effect management, and transitioning to survivorship. Two cross-cutting aspects are the psychological and socio-financial aspects. Patient-reported outcome measures (PROMs) offer insights into concerns and guide interventions, yet long-term QoL studies are limited. Qualitative analysis complements PROMs, offering deeper insights for tailored counseling. Educating patients and caregivers on managing acute side-effects is vital, with early identification of at-risk patients being crucial. Late complications are common and severe, often leaving patients feeling unsupported. Supportive care also plays a crucial role in managing treatment-related side-effects and optimizing recovery from skin care for radiation dermatitis, pain management, pelvic floor physical therapy for sexual dysfunction during and after treatment, use of vaginal dilators during radiation treatment, topical vaginal hormone therapy, and counseling for sexual dysfunction. With the goal of providing increasing integration of services for patients with anal malignancies, patient organizations (such as the Anal Cancer Foundation) have sprung up to offer support, educational initiatives, and resources to improve patient outcomes and QoL.