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

Claire Jeans, Elizabeth C. Ward, Bena Cartmill, Anne E. Vertigan, Amanda E, Jodie L. Nixon, Chris Wratten. Eur J Cancer Care. 2018

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

Claire Jeans, Elizabeth C. Ward, Bena Cartmill, Anne E. Vertigan, Amanda E, Jodie L. Nixon, Chris Wratten. Eur J Cancer Care. 2018

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.

Main findings

  • There is now emerging evidence to suggest that the presence of head and neck lymphoedema (HNL) may also contribute to the chronic side effects for some patients.
  • The aim of this study is to explore the experiences of patients with HNC who have HNL following treatment and examine their perceptions of the impact of HNL on their swallowing, voice and speech function.
  • N = 12. The prevalence of HNL and its impact on function revealed that 11 participants felt that their HNL made it harder for them to swallow, and four participants felt that their HNL specifically impacted on their speech. Ten participants also described a change in vocal quality and/or pitch. However, the majority believed that these issues were multifactorial, and the presence of xerostomia was often recognised as the main influencing factor. It was therefore difficult for participants to discuss the specific impact of HNL on their voice.
  • All participants had some  degree of external and/or internal HNL which co- occurred with reports of altered sensation within the head and neck region. Feelings of tightness, heaviness and feeling swollen on the external face and neck were highlighted, which is consistent with previous research.
  • Whilst swallowing changes were reported by the vast majority of participants, only a small number felt that their internal HNL impacted on their speech function. This finding may be reflective of the small number of participants treated with postoperative radiotherapy; as anecdotal evidence suggests that this patient group is at highest risk of experiencing impacts to speech, likely due to both surgical and radiotherapy effects.
  • Multiple participants discussed temporal changes in their HNL and corresponding fluctuations to their swallowing and speech function throughout the day. It is known that temporal changes in HNL exist and that swelling often increases overnight.
  • Due to the impact of HNL and its associated temporal changes, the need for daily self- monitoring and management was noted to be vitally important by participants. All were completing some form of daily home management for their external HNL, in an effort to relieve their symptoms.
  • Limitation of this study included the diverse participant sample, and there was no attempt to separate the early and late impacts of HNL and all the participants were recruited from the same service.
  • Insights from their experiences reveal that the presence of HNL may have contributed to increased difficulty swallowing, had negative effects on bolus flow, and also had an impact on the speed and precision of their articulatory movements for speech. These functional changes often fluctuate with HNL symptoms, and therefore require patients to monitor their function on a daily basis and implement compensatory strategies as required; such as diet modification, additional fluid washes, and clear speech strategies. Speech pathologists need to be aware of and monitor their patients for HNL and any associated impacts on swallowing and speech function, and ensure they prepare patients with contingency plans to manage times of increased difficulty. The multidisciplinary team also need to remain aware of the widespread impacts of HNL, including swallowing and speech changes, so that symptom management and supports are provided in a timely manner for all patients.