Introduction
The functions of the larynx are two-fold: phonation and protection of the lower airways. Laryngeal malignancy, most commonly squamous cell carcinoma (SCC), is the most common form of head and neck cancer; which is the 8th most common in the United Kingdom.1
Patients diagnosed with locally advanced laryngeal malignancy may be offered curative surgery, in the form of laryngectomy, or non-surgical oncological treatment, chemoradiotherapy (CRT), on the advice of the head and neck multi-disciplinary team (MDT).1 Pre-treatment, patients are counselled extensively to ensure that a patient-centred approach is adopted and that the risk-benefit profile of each treatment option be considered.Reference Terrell, Fisher and Wolf2 The non-surgical approach aims to preserve laryngeal function, speech and swallow; however, a recognised consequence of this is a non-functional larynx with persistent aspiration post-treatment.Reference Theunissen, Timmermans and Zuur3, Reference Farlow, Birkeland, Hardenbergh and Lyden4
Oropharyngeal aspiration can be a significant morbidity, leading to chemical pneumonitis, pneumonia, sepsis and death.Reference Marik and Kaplan5 Therefore, patients who wish to avoid gastrostomy tube feeding or tracheostomy dependence may subsequently be offered a “functional laryngectomy” to avoid the life-threatening complications of end-stage laryngeal dysfunction.Reference Farlow, Birkeland, Hardenbergh and Lyden4–Reference Allen, Lee and Merati7 However, performing a total laryngectomy in the salvage setting is not without risk. Compared to primary surgery, the risk of challenging surgery, wound necrosis, dysphagia, pharyngocutaneous fistula and stomal stenosis are significantly higher in the post-CRT neck.Reference Anschuetz, Shelan, Dematte and Schubert8
The functions of phonation and swallowing are crucial to patient’s long-term quality of life outcomes in laryngeal cancer.Reference Hasan, Dwivedi, Gunaratne, Virk, Palme and Riffat9 Currently there are an abundance of objective and subjective outcome measures for quality-of-life (QoL) outcomes in the context of primary laryngectomy for malignant disease, including the Swallowing Outcomes After Laryngectomy (SOAL) and Voice Handicap Index (VHI).Reference Lee, Govender, Roy, Vaz and Hilari10, Reference Evans, Carding and Drinnan11 At present, no studies have explored the qualitative implications on patients wishing to undergo functional laryngectomy for end-stage laryngeal dysfunction. In particular, exploring the decision-making process patients undertake to undergo laryngectomy after already completing curative CRT.
Aims
This qualitative study aims to explore the perceptions and experiences of patients who have undergone functional laryngectomy for laryngeal dysfunction. We hope to determine the impact of this decision on patients, helping us understand the rationale and satisfaction with their choice in order to counsel future patients accordingly.
Materials and methods
Design
This research project takes the form of semi-structured interview with qualitative analysis methods. A semi-structured interview guide was developed to explore the patients’ perceptions and experiences of undergoing functional laryngectomy; with a flexible approach to guide the qualitative exploration, without hindering emergent themes.Reference Rubin and Rubin12 The interview guide was mapped to existing laryngectomy QoL outcome measures. The interview guide was presented at the regional Head & Neck MDT to ensure holistic perspectives were gathered and validated by an expert qualitative researcher.
Sampling and participants
Purposive sampling methods were used to recruit patients who had undergone functional laryngectomy within one Health Board in the UK. Patients were identified retrospectively from the Welsh Cancer Network Information System (CANISC) records. Inclusion criteria included any patient who had undergone functional laryngectomy within the last 10 years (2012-2022). Participants were invited by letter initially, then with a follow-up telephone call. Participants were invited to bring a family member or friend to the interview for support.
Analysis
Data gained from the interviews was transcribed verbatim from audio-recorded responses. Braun & Clarke’s tool for thematic analysis was used to evaluate the data and accommodate emerging patterns in the data in a bottom-up approach.Reference van Sluis, Kornman, van der Molen, van den Brekel and Yaron13 During each subsequent interview, any emerging themes were added to the interview guide patients to provide respondent validation. Both during data collection and coding, it was apparent that a saturation of new perspectives was complete by the third interview.
Results
In total, 3 male patients accompanied by a partner or next of kin participated in the interviews. The mean participant age was 66.6 years (age range 61-76 years). All patients underwent functional laryngectomy following non-surgical treatment for laryngeal cancer on average 28 months after completion of oncological treatment (range 13–43 months after non-surgical treatment). All patients had been laryngectomees for >12 months and were appropriately voice rehabilitated (electrolarynx or prosthetic surgical voice restoration). This represents the total surviving population of functional laryngectomees within this Health Board. All interviews lasted between 45-90 minutes.
This section presents the results of the thematic analysis. The final themes and sub-themes are demonstrated in Table I with illustrative quotes.
Final Themes
Theme 1: preparation for treatment
Preparation for non-surgical and surgical treatment
This theme combines the codes relating to preparation for treatment, support, memories of consent process and experiences of diagnosis. All participants had different recollections of the advice given at their initial cancer diagnosis, which in turn impacted the decision for non-surgical management. However, it was clear that none of the participants fully appreciated the potential toxicity of non-surgical management both in the short and long-term.
Patient 1: “I might not have had the radiotherapy if I’d known how bad it would have been.”
Patient 2: “The doctors told me what I was going to have, but not what to expect.”
In this cohort, the data suggests that participants felt that non-surgical treatment was the lowest risk option to take and therefore had a lack of appreciation for the risks of toxicity, including laryngeal dysfunction. It was fair to say that none of the participants, even those who considered themselves to be very well informed, realised the risk of laryngeal dysfunction.
Patient 1: “We thought the worst was supposed to be over after the radiotherapy. I didn’t expect the radiotherapy to burn all the good things away.”
Patient 3: “I don’t think people were entirely upfront about the severity of the treatment… often they say that this might occur. Not this will occur… so when it does you can talk about the solution.”
Nonetheless, all participants valued the support of wider members of the multi-disciplinary team (MDT) when making decisions, as well as informal advice from family members. In fact, many felt more grateful for the advocacy and validation of Speech & Language Therapists (SALT) in recognising their laryngeal dysfunction. It is possible that many felt that they were unable to burden clinicians with their complaints or issues:
Patient 3: “During treatment there is a lot of contact, you see someone on a daily basis, there’s a lot of medicalisation. Then suddenly it finishes and blank, you’re on your own. “Give me shout if there’s a problem” -well you don’t want to bother people. You don’t always want to ask a medic, in case they think you are stupid.”
However, the opportunity for peer-to-peer advice was something all the participants craved prior to their treatment. It has become commonplace in the majority of Head & Neck units in the UK for patients deciding to pursue laryngectomy to have an opportunity to meet a patient who has already had the surgery. This may allow a greater ability to have a lay discussion and understand the reality of living with a laryngectomy. However, it is less commonly reported for patients to meet others who have had the non-surgical option. As such, understanding the toxicities of CRT and potential side-effect of non-functional larynx was perhaps underappreciated. Only in one case where a participant already had a family member who had undergone similar treatment, did they feel that the informal discussions about treatment had been covered.
Patient 1: “I wish I could have had a chat with someone before I decided.”
Patient 2: “My sister had the same treatment 3 years before me, and she told me what to expect really… I spoke to my sister more than I spoke to the doctors. Having my sister and the doctors with different expertise was like having different pieces of the jigsaw.”
This supports the need for rigorous preparation for patients undergoing both surgical and non-surgical treatment options for advanced laryngeal carcinoma.
Theme 2: the tipping point
This was a major recurring theme amongst all participants; where every patient recognised a specific point in their journey where they were open to considering major surgery. At the time of functional laryngectomy, all three patients were tracheostomy dependent and 2 were gastrostomy dependent. Despite this, all three patients’ tipping points were relative; ranging from life-threatening events to relatively innocuous.
Patient 1: “The aspiration and the sepsis was the tipping point… I lost 12 months of my life in hospital.”
Patient 2: “I was at my lowest when I couldn’t eat, couldn’t go to the pub, eat a bacon buttie.”
Patient 3: “I was getting more breathing difficulties, hospitalisations, regular steroids and nebulisers… Golf was really important and I was playing well, I didn’t want to disrupt that – so we had a chat about laryngectomy.”
It was apparent that for all patients, the risk-profile for major surgery for functional purposes had tipped. Where major surgery was perceived to be less risky now as an elective procedure when compared to surgery for malignant disease at the point of initial cancer diagnosis.
Patient 1: “I had nothing to lose.”
Patient 2: “As soon as I found out about the lary (sic) as an option, I was desperate.”
Patient 3: “I didn’t think of the risk (of surgery)… My family were 100% against it. They only focussed on the bad aspects of the surgery, which is why they were against it.”
This is perhaps a dangerous perception, in the patient who feels as though they have “nothing to lose”. Particularly in this patient cohort who may be more frail as a result of prolonged aspiration and frequent hospitalisation. Whilst all patients interviewed were appropriately selected for surgery, the assessment for functional laryngectomy needs to remain objective and patients given realistic expectations for long-term outcomes.
Theme 3: attitudes to future healthcare
One of the most interesting overarching themes, was the apparent change in attitudes over the course of their journey. All identified themselves as a stereotypical, “stubborn” and care-free man, who had had limited reasons to seek healthcare prior to their diagnosis. However over the course of their journey, all identified becoming better advocates for their own health.
Once they felt their symptoms were validated and recognised, they became motivated to seek a solution.
Patient 3: “I had involvement, which is more important than control. It was important to be involved in that decision-making.”
As a result of this process, it was clear that all participants became advocates for their own health, becoming more pro-active and involved in decision making.
Patient 1: “I like more input now… We appreciate people not trying to protect us.”
Patient 2: “I want to find out what is wrong when I have a problem now.”
Partner of Patient 1: “It has really changed his nature, nothing used to bother him. We don’t let anything slide now. We want to make sure things are right, we need to be more upfront now.”
In addition to this, regardless of whether participants felt they had good pre-operative counselling, they all wanted to advocate for other patients; offering to meet and support other potential laryngectomees both in formal or informal capacity in future.
Patient 2: “When I was in hospital, the guy opposite me didn’t want it (laryngectomy) done, so I wrote a letter to tell him to have it done.”
This highlights the value of the model patient used to help counsel patients in the majority of centres. But as aforementioned, this is something that is lacking perhaps in the preparation of patients for non-surgical treatment.
Theme 4: post-operative quality of life
This theme was generated to reflect and contrast the existing outcomes on post-operative quality of life for patients having laryngectomy as the primary treatment measure for their laryngeal malignancy. The interviews automatically reflected some of the VHI and SOAL domains, since the course of the discussion allowed for pre- and post-treatment comparison of breathing, voice and swallow.
In general, given the severity of the pre-surgical symptoms, all patients were broadly positive the post-laryngectomy outcomes. In particular, the improved voice and breathing were highly valued by all participants post-operatively. The swallow outcomes were variable, with some dysfunction still reported; however they recognised that this was an improvement on the pre-surgical state.
Patient 2: “The lary (sic) has given me a new life. Eating, drinking, socialising… which I hadn’t done for 2 years. It makes a lot of difference to your lifestyle.”
Partner of Patient 1: “He’s a very slow eater… His food has normally gone cold before he can finish it.”
One participant very eloquently summarised the pros and cons of laryngectomy, providing the beginnings of a matrix that may help counsel future patients.
Patient 3: “They asked what was more important to me: feeding, talking or breathing. Which one do you want to give up? I put them in order. Breathing, eating, then speaking… I’m married so the wife does all the talking anyway.”
Whilst there were a number of the recognised negative impact on patients’ quality of life, their view on this was far less severe than the alternative pre-treatment. It is possible that this positive skew may be represented in the wider functional laryngectomy population when compared to those who underwent primary laryngectomy for malignancy.
Discussion
This is the first study to explore personal experiences of patients undergoing functional laryngectomy for end stage laryngeal dysfunction.
Functional laryngectomy is a recognised, but not widely accepted practice, especially considering the higher surgical risk when compared to primary surgery.Reference Anschuetz, Shelan, Dematte and Schubert8, Reference Olinde, Evangelista and Bewley16 The principles of functional laryngectomy are to alleviate the consequences of end-stage laryngeal dysfunction; namely aspiration, recurrent pneumonia, and enteral feeding dependence. This study aims to capture experiences of three unique patients with a shared experience in one Health Board. Through semi-structured interview with patients and relatives, this study explores the many facets of the decision to undergo laryngectomy for non-functional larynx; helping surgeons understand the rationale and satisfaction of patient’s choices, which can aid in the counselling of future patients towards functional laryngectomy.
The larynx plays an integral role in protecting the lower airway, contributing to speech and to swallow. Despite being extensively counselled, all patients under-appreciated the toxicity of non-surgical treatment and potential consequences of laryngeal dysfunction. This is a well recognised complication, with swallowing dysfunction reported in >80% of patients who undergo CRT to larynx, voice change in >65% and chronic aspiration in >10%.Reference Almas and Jeffery14
Given that these can occur as both short and long-term complications, and the variability in each participant’s “tipping point”, surgeons should be vigilant during the 5-year surveillance period and consider intervening with aspiration-prevention surgery where possible. However, the assessment must remain objective. In this cohort there was a clear change in risk-benefit perception and attitudes of patients towards major functional surgery, in context of their previous dysfunction.
Whilst it has become commonplace for units to offer prospective patients the opportunity to talk to an existing laryngectomy patient, this is not something routinely offered for patients considering non-surgical treatment.Reference Tian, An, Zhang, Sun, Zhao and Liu15 Both must be considered equivalent life-changing interventions, so the opportunity to meet a patient who has undergone CRT would have been highly valued by this patient cohort.
Based on larger, quantitative data sets the insights into the long-term quality of life outcomes appear to mirror the existing outcomes for laryngectomy in the malignant setting. Whilst the need for tracheostomy or enteral feeding was decreased in all patients, there was still some persistent swallow dysfunction reported. However, all participants suggested that this was a vast improvement on their pre-surgical state; which potentially skews our population to being more optimistic regarding their future outlook, given their negative experiences of laryngeal dysfunction pre-operatively.
Further study
This qualitative study has highlighted a number of domains that may help in both the pre- and post-operative elements in these patients care. Firstly, the themes uncovered can feed into a priority matrix to help aid the consent process for patients considering functional laryngectomy. Secondly, these domains can be used to modify and enhance the existing objective quality of life outcome measures we use to assess the long-term impact of laryngectomy in the functional setting.
In this study, all participants are male, and although perspectives are given by female partners, it may not be a true representation of all patients’ experiences undergoing functional laryngectomy; specifically the psychosocial differences found in female laryngectomees in van Sluis’s work.Reference van Sluis, Kornman, van der Molen, van den Brekel and Yaron13
• Laryngeal dysfunction can be a consequence of chemoradiotherapy for locally advanced laryngeal malignancy resulting in issues with airway, voice, and swallow.
• Functional laryngectomy can be offered to patients with end-stage laryngeal dysfunction.
• Patients may be reticent to major surgery due to the risk of surgical complications.
• This study identifies many of the facets of the decision to undergo laryngectomy for non-functional larynx; recognising a patient’s critical tipping point and changes in attitudes towards surgical intervention.
• These lessons can aid in the counselling of future patients towards functional laryngectomy.
Conclusion
This study is the first of its kind to uncover the long-term functional and psychological experiences of patients undergoing functional laryngectomy for end-stage laryngeal dysfunction. The results explore the many facets of the decision to undergo functional laryngectomy in the non-malignant setting; helping us better understand the rationale and satisfaction of patients’ choices, which can aid in the counselling of future patients towards functional laryngectomy.
Acknowledgements
All participants, the North Wales Head & Neck MDT, Awyr Las Blue Sky Charity for their kind sponsorship and Nikki-Lloyd Jones for her qualitative research expertise.
Funding
Charitable funding was granted by Awyr Las Registered Charity No. 1138976.
Ethical Considerations
Ethical approval for the project was sough and granted the Health Research Authority (HRA) and Health Care Research Wales (HRCW) (IRAS reference number 307733). Written informed consent was obtained from all participants. Pseudonyms are used to anonymise the identity of patients when using quotations
Competing Interests
The authors declare none.
