A qualitative analysis of patient's lived experience on their treatment journey with nasopharyngeal carcinoma

Abstract

Objective: To explore and analyse the perspective of patients undergoing and recovering from nasopharyngeal carcinoma (NPC) therapy.

Methods: Thirty-three NPC patients at different stages of treatment were enroled. Seven were actively undergoing treatment, 13 were immediately post-treatment, and 13 were long-term. Patients were interviewed using a structured questionnaire based on a review of the literature that covered different phases of their treatment journey. The interview was recorded and transcribed for qualitative data analysis using a thematic inductive-deductive approach.

Results: Three main domains embracing aspects of NPC patients' experiences were identified; side effects, psychosocial well-being, and the role and support of healthcare workers. Side effects were experienced orally, locally, and systemically. Oral side effects (oral mucositis, xerostomia, altered taste, dysphagia) were the most significant challenge experienced by NPC patients. Locally, skin injury (desquamation, fibrosis, darkening of the skin, erythema, pruritus, and swelling around the neck region) and hair loss, resolved after cessation of therapy. Systemic side effects from the treatment were related to general weakness, weight loss and nausea. The psychosocial well-being of NPC patients was influenced by a range of issues including support (healthcare workers and family), pain management, functional limitations, nutritional needs, perceived level of information, emotion, and finances.

Conclusion: NPC patients were significantly impacted based on the diagnosis, treatment and recovery phase affecting them locally, systemically, and psychologically. The role of family and healthcare staff was also influential in the overall treatment experience, and they have key roles to play in facilitating patients along their treatment journey.

Clinical significance: Oral and general side effects from NPC treatment have significant impact on patients physical and emotional well-being. It is important for healthcare providers to have insights of these so as to understand and support patients during their treatment journey and recovery and be able to empathetically facilitate their clinical management.

Keywords: Interview; Irradiation therapy; Lived experience; Local side effects; Management; Nasopharyngeal carcinoma; Oral side effects; Qualitative analysis; Systemic side effects; Treatment journey.