Patient perceptions of living with head and neck lymphoedema and the impacts to swallowing, voice and speech function

Abstract

Head and neck lymphoedema (HNL) is common following head and neck cancer (HNC) treatment, and may contribute to numerous physical, functional and psychological symptoms. However, its impact on swallowing, voice and speech is less well understood. The aim of this study was to use interpretive description to explore patient perceptions relating to the impact of HNL on swallowing, voice and speech. Twelve participants, >3 months post HNC treatment and experiencing some form of HNL, participated in individual, semi-structured interviews. Transcribed interviews underwent thematic analysis using an inductive approach, with subsequent member checking. Most participants felt their HNL impacted their swallowing and some had impacts on speech; although the impact on voice was less clear. Four themes emerged, including three themes relating to HNL and its impact on swallowing and speech: "it feels tight;" "it changes throughout the day;" "it requires daily self-monitoring and management;" and a fourth general theme "it affects me in other ways." Participants perceived direct impacts from HNL to swallowing and speech. They often experienced daily symptom fluctuations that required additional strategies during times of increased difficulty. Findings highlight the need to improve patient education regarding the functional impacts of HNL and the importance of self-management.

Comparing the prevalence, location, and severity of head and neck lymphedema after postoperative radiotherapy for oral cavity cancers and definitive chemoradiotherapy for oropharyngeal, laryngeal, and hypopharyngeal cancers

“…The majority of patients treated for HNC will likely undergo multiple transnasal laryngoscopies for ongoing cancer surveillance, or a fiberoptic endoscopic evaluation of swallowing (FEES) to examine swallow function; and these represent opportune moments to incorporate internal HNL screening. Previous research has also shown that patients with internal HNL often experience altered sensations within the head and neck region, such as a perceived change in the size of the pharyngeal lumen 22,34 . Increased attention to these patient‐reported symptoms may also allow clinicians to screen and diagnose internal HNL in a timelier manner.…”

“…If left untreated, lymphedema may ultimately progress and result in the development of fatty tissue deposits and further the development of fibrosis 5,9,35 . There is the potential for those affected patients to have significant symptom burden, 19‐22 which may ultimately have detrimental effects on quality of life. The widespread presence of chronic HNL in the current cohort reinforces the need for improving early screening and diagnostic processes, to better facilitate early intervention and in order to help to minimize, where possible the presence of HNL 23 …”

“…Similar methodological issues concerning the measurement of internal HNL, variable time periods of assessment, heterogeneity of the populations under investigation, and a particular focus on laryngeal lymphedema in isolation contribute to the lack of clarity regarding the true extent of this problem. This is an area that requires greater consideration, particularly as HNL is known to impact upon a wide range of physical, functional, and psychological symptoms, such as reduced range of movement in the neck, difficulty swallowing, altered speech, poor body image, and higher levels of distress 19‐22 …”

Association between external and internal lymphedema and chronic dysphagia following head and neck cancer treatment

“…Three qualitative studies have concluded that patients often perceive a link between the presence of HNL and swallowing function. [16][17][18] In one study, 18 11 of 12 patients felt that their HNL made it harder for them to swallow, and these patients spoke of having to modify their diets and use additional compensatory strategies during mealtimes. Patients also reported more difficulties with solid foods, rather than fluids.…”

“…8,9 A number of qualitative studies have also shown that patients often perceive a link between their HNL and swallow function. [16][17][18] One study reported that 11 of 12 participants with long-term HNL felt that that their HNL had altered their swallow function in some way. 18 Participants described feelings of tightness and swelling within their pharynx that had various impacts on swallowing, including negative effects on bolus flow with solid foods.…”