Examining dysphagia from the perspectives of head and neck cancer survivors and carers
Dysphagia in Head and Neck Cancer
Head and neck cancer (HNC) contributes considerably to the global cancer burden as it is the seventh most common cancer worldwide [1]. With improvements in techniques minimizing the associated morbidity of treatment, dysphagia is now considered one of the most relevant side effects among HNC survivors receiving (chemo)radiotherapy (CRT) [2] , with 63% to 100% of studies reporting ongoing swallowing problems between 1 and 5 years post-treatment. [3]. Despite what is known about the prevalence and physiological profile of dysphagia following CRT, there is little understanding of the key issues faced by HNC survivors post-treatment. In order to better meet their needs, it is important to understand survivors’ perspectives of what it is like to live with and adjust to dysphagia post-treatment.
How do Head and Neck Cancer Survivors Experience Dysphagia?
Recent national and international research, including work from our tertiary healthcare center, has demonstrated that dysphagia has a multifactorial and complex impact on the lives of HNC survivors [7-9]. As expected, interviews with HNC survivors have noted a wide range of physical changes impacting on swallowing ability including dry mouth, changes in taste, and oral and pharyngeal sensitivity:
“The lack of saliva … the dry mouth … it affects everything … eating, swallowing, talking, everything.”
In addition to the physiological changes, HNC survivors report a number of emotional responses to their post-CRT eating habits as well as effects on their self-image [7]. Emotions expressed by HNC survivors include frustration, anger, anxiety, depression, envy, loss, fear, defeat, and embarrassment.
“My diet has changed a lot now and that really ****** me off”
“You dread it, you dread having something to eat…it hurts so much”
Survivors also report changes to how they feel about food and eating. They commonly describe that eating is no longer enjoyable or pleasurable which leads to a lack of social occasion and a sense of no longer bothering to eat [7-9].
“The only satisfaction I get from my food on my plate is that I won’t die from hunger. That’s the only satisfaction that I get.”
“[At] work … blokes will go and have a feed, I won’t eat in front of them. I’ll go and sit in the van myself and eat just in case I choke or something … it’s embarrassing.”
How do Head and Neck Cancer Survivors Adjust to Dysphagia?
Courtesy of Rebecca Nund
A number of studies have reported long-term dysphagia up to 10 years post-treatment [4,6,10,11], despite the mainstay of HNC research focusing on improving cancer cure and minimizing acute toxicity. Unfortunately it is acknowledged internationally that clinicians are unable to meet current survivor demands regarding dysphagia management across the continuum of care [12-14]. This is reflected in the nature of healthcare services that are generally concentrated during and within the first 3 months of treatment, with limited supportive services available in the post-treatment phase. Research conducted at our center has found HNC survivors desire ongoing follow-up from health professionals in regards to dysphagia throughout the post-treatment period [15].
“When you’ve had your radiation, you are told [to] come back in six weeks, you go home and that six weeks is the worst six weeks out of everything and you haven’t got that support then.”
“Follow ups … we get oncology appointments … I think we should have one for the eating … on a regular basis.”
Additionally, HNC survivors report feeling unprepared for the degree and duration of the side effects on swallowing function, noting that the challenges of living with dysphagia require practical and emotional adjustments, as well as a reliance on family, friends and alternative therapies [15].
“I didn’t know it was going to be this hard. I just thought I would go home and have a normal meal … a normal life.”
“It was like a competition for me … two years after treatment you are still trying to cope with your eating. You got to be a champion to do that.”
“I ate because [carer] insisted that I eat.”
How do Family Carers Experience Dysphagia?
Given that eating and mealtimes are profoundly social events that sustain not only our physiological needs but also our social and emotional life, the potential for dysphagia to also impact on the life of the carer is great. In novel work from our centre, we have found that dysphagia profoundly disrupts the life of the carer in regards to meal preparation, family life, socializing and eating out, and evokes numerous emotional responses [16].
“I have to make an impaired throat meal and, as much as possible, a standard meal for me.”
“We [don’t] sit at the table … there is less talk … less other things happening … because we don’t want to go anywhere because he can’t eat.”
“How do I cope with this? What do I do to make it so he doesn’t choke on his food?”
Carers also feel unprepared for the pervasive effects of dysphagia. They need to make adjustments and adapt to their partner’s dysphagia in an environment where there are limited formal supports [16].
“It’s tough stuff after the treatment finishes…after that it’s up to the home carer and they haven’t been there before, they’ve got no expertise and to a great extent no technical information either.”
Implications for Clinical Practice
Courtesy of Rebecca Nund
These insights from the survivors and their carers indicates that not only is more contact with services required, but a greater diversity of services is needed to assist them to adapt to the complex and multifactorial changes associated with living with dysphagia. As highlighted in our recent publication in the International Journal of Language and Communication Disorders, these issues cannot simply be solved with a greater number of speech-language pathologists but rather requires the consideration of innovative service delivery methods [15]. These could include but are not limited to:
- Patient monitoring via technology
- Monitoring distress to facilitate early referral
- Addition of other allied health members to dysphagia management (e.g., psychology)
- Running skill building sessions (e.g., meal preparation)
- Family-centered care approach (e.g., including carer in dysphagia management)
- Peer support
- Facilitating links to community and social networks
We are working on the need to develop and evaluate these and other novel strategies to assess and manage the complex effects of dysphagia, beyond the physical changes, to better meet the needs of HNC survivors and to enhance post-treatment support. There also needs to be a greater recognition of the essential role of carers in supporting people with dysphagia and they should be viewed as co-partners in dysphagia management.
More detailed information regarding survivorship issues for people with head and neck cancer and their carer can be found in a new chapter in the second edition of Head and Neck Cancer: Treatment, Rehabilitation, and Outcomes
References
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- Christianen, M, Schilstra, C, Beetz, I, Muijs, CT, Chouvalova, O, Burlage, FR, et al. (2012). Predictive modelling for swallowing dysfunction after primary (chemo)radiation: results of a prospective observational study. Radiotherapy and Oncology 105, 107-114.
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- Nund RL, Ward EC, Scarinci N, Cartmill B, Kuipers P, Porceddu SV (2014) Survivors’ experiences of dysphagia-related services following head and neck cancer: Implications for clinical practice. International Journal of Language and Communication Disorders. doi: 10.1111/1460-6984.12071
- Nund RL, Ward EC, Scarinci N, Cartmill B, Kuipers P, Porceddu SV (in-press) Carers’ experiences of dysphagia in people treated for head and neck cancer: A qualitative study. Dysphagia. doi:10.1007/s00455-014-9527-8
About the Co-Author
Bena is an advanced speech-language pathologist (oncology) who has provided swallowing and communication management to head and neck cancer survivors over the past 10 years at the Princess Alexandra Hospital in Brisbane, Australia. She completed her PhD in 2012 examining the swallowing, nutrition and functional outcomes of head and neck cancer patients following non-surgical treatment. Her current research interests include improving the service delivery and rehabilitation needs of head and neck cancer patients during and following treatment.
