The experience of dysgeusia in allogeneic haematopoietic cell transplantation survivors: a qualitative study

Background: Taste disorders are one of the most common side effects of treatment in oncology patients and often occur after allogeneic haematopoietic cell transplantation (allo-HCT). Dysgeusia does not receive close medical attention, and information about this disorder is largely based on the clinician’s own experience. However, taste disorders can have an impact on the quality of life and nutritional status of survivors of allo-HCT. The number of performed annual transplantations is growing, as the number of older long-term survivors increases, but only few research studies examine survivors of allo-HCT with taste disorders. We conducted a qualitative descriptive study to explore experiences of dysgeusia in patients undergoing allo-HCT and to examine what strategies they used to mitigate it. Methods: Using purposeful sampling, survivors of allo-HCT were recruited. Audiotape interviews were conducted until data saturation was achieved. Each interview was transcribed verbatim, and content analyses were performed to extract significant themes and subthemes. Results: Three major themes embracing various aspects of allo-HCT survivors’ experiences were identified: (1) the shape of taste; (2) everything is irritating and it is arduous to eat; (3) finding new strategies to overcome the problems. Together, they highlight the experiences of survivors showing how the taste disorders can affect the physical, psychological and social dimensions of a person. Conclusion: A cumulative burden is the result of dysgeusia and its clinical course reinforced also by related symptoms. Healthcare professionals must focus their attention on the management of these symptoms and offer interventions to safeguard the patient’s social, physical and psychological well-being.