Perceptions and experiences of post-irradiation swallowing difficulties in nasopharyngeal cancer survivors

Abstract

This study aimed to explore the perceptions and experiences of swallowing difficulties in irradiated survivors of nasopharyngeal carcinoma (NPC). Qualitative semi-structured interviews were conducted with 60 post-irradiation NPC patients after they had answered a set of self-report questions. The interviews were transcribed verbatim for analysis. Results of the self-report data showed that in response to a global question 'Do you have any swallowing difficulties?' eight-five per cent of the respondents reported a certain degree of difficulty. The qualitative interview findings, however, suggested that this figure might have been underestimated. Patient interpretations of swallowing difficulties had excluded part of the symptoms. Some respondents who claimed to have no difficulty swallowing, in fact, were suffering from oral retention of food bolus, regurgitation of food or liquids through the nose, and/or even choking. The risk of aspiration was generally neglected. Informants' concerns focused more on the threat of cancer recurrence, thus paid less attention to the radiation-induced swallowing complication. Respondents did not possess sufficient knowledge to judge their swallowing abilities at a general level. This study suggests ways to enhance patient-provider communication and health education to improve patient knowledge.

Listening to the voice of patients with head and neck cancer: A systematic review and meta‐synthesis

“…All 13 studies selected described the research goals and study design, and one reported the research questions (Moore et al, ). Four recruited participants via convenience sampling (Cartmill et al, ; Haisfield‐Wolfe et al, ; Ottosson et al, ; Tong, Lee, Yuen, & Lo, ), while the other eight recruited patients through purposive sampling (Charalambous, ; Chou, Liaw, & Tang, ; Ganzer, Rothpletz‐Puglia, et al, ; Larsson, Hedelin, & Athlin, ; McQuestion et al, ; Nund et al, ; Patterson, McColl, Wilson, Carding, & Rapley, ).…”

“…At the same time, difficulty swallowing produced anger, frustration, anxiety, depression, shame and a sense of defeat. Eating became a mandatory action in which they engaged only to gain, or at least not lose weight, and continue with treatments (Cartmill et al, ; McQuestion et al, ; Tong et al, ). At the same time, their diet became limited severely (Ganzer, Rothpletz‐Puglia, et al, ; Ottosson et al, ; Tong et al, ).…”

“…Dysphagia, dysgeusia, dry mouth, fatigue and loss of weight, appetite and energy are examples of symptoms that occur during and after treatment and compromise QoL (Cartmill et al, ; Ganzer, Rothpletz‐Puglia, et al, ; Moore et al, ). Some symptoms, such as dysphagia, are present even before they begin radiotherapy, but often are perceived little or undervalued (Patterson et al, ; Tong et al, ). During and after treatments, however, their presence is prominent; swallowing becomes increasingly difficult and intensely painful.…”

“…The absence of saliva also impairs swallowing (Nund et al, ; Patterson et al, ), and the loss of oral and pharyngeal sensitivity, coughing and changes in smell and taste compromise eating further (Nund et al, ). For some, all of these symptoms are associated with a fear of choking and the constant perception of food stuck in the throat (Nund et al, ; Tong et al, ). Xerostomia contributes to difficulties in food intake and the onset of mouth ulcers, infections, bad breath and pain; it also has significant adverse effects on sleep and energy (Charalambous, ; Moore et al, ).…”

“…Xerostomia contributes to difficulties in food intake and the onset of mouth ulcers, infections, bad breath and pain; it also has significant adverse effects on sleep and energy (Charalambous, ; Moore et al, ). In many cases, symptoms patients experience are associated with fear because they will require invasive devices and supplemental feeding whit artificial food (Moore et al, ; Ottosson et al, ; Tong et al, ). In addition, many patients suffer from depression manifested by agitation, sleep disturbances, difficulty concentrating and loss of interest, energy and pleasure in eating (Moore et al, ).…”