Patient-Reported Dysphagia After Thyroidectomy

Key Points

Question

How common is postthyroidectomy dysphagia, and how is it characterized by patients and by instrumental evaluation during the first postoperative year?

Findings

Of 26 patients surveyed, 80% (n = 20) perceived dysphagia 2 weeks after thyroidectomy; 42% (n = 11) at 6 weeks; and 17% (n = 4) at 6 months after total thyroidectomy. In contrast, few patients (8%; n = 2) had any abnormalities found by clinical assessment or instrumental swallowing evaluation that warranted further follow-up, and these few abnormalities occurred only at the 2-week follow-up, not beyond.

Meaning

Postthyroidectomy swallowing symptoms are common and may persist for months postoperatively; the risk of dysphagia is important to discuss because simple interventions may improve quality-of-life consequences of patient-perceived postthyroidectomy dysphagia.

Abstract

Importance

It is important that clinicians understand consequences of thyoridectomy on swallowing from the patient perspective to better care for this population.

Objective

Using rigorous qualitative methodology, this study set out to characterize the effect of swallowing-related symptoms after thyroidectomy on patient quality of life and swallowing-related outcomes.

Design, Setting, and Participants

Prospective, grounded theory analysis of interviews with 26 patients at 3 time points after thyroidectomy (2 weeks, 6 weeks, and 6 months). Data were collected from an ongoing clinical trial (NCT02138214), and outpatient interviews were conducted at the University of Wisconsin Hospital and Clinics. All participants were age 21 to 73 years with a diagnosis of papillary thyroid cancer without cervical or distant metastases and had undergone total thyroidectomy. Exclusion criteria were preexisting vocal fold abnormalities (eg, polyps, nodules), neurological conditions affecting the voice or swallowing ability, and/or development of new-onset vocal fold paresis or paralysis (lasting longer than 6 months) after total thyroidectomy.

Interventions

Total thyroidectomy.

Main Outcomes and Measures

Symptoms of dysphagia and related effects on quality of life elicited through grounded theory analysis of semistructured interviews with patients after thyroidectomy designed to foster an open-ended, patient-driven discussion.

Results

Of the 26 patients included, 69% were women (n = 18); mean (SD) age, 46.4 (14.1) years; mean (SD) tumor diameter 2.2 (1.4) cm. Two weeks after thyroidectomy, 80% of participants (n = 20) reported at least 1 swallowing-related symptom when prompted by the interview cards; during the open interview, 53% of participants (n = 14) volunteered discussion of swallowing-related symptoms unprompted. However, only 8% of participants in this study (n = 2) qualified for a follow-up dysphagia evaluation, indicating that the majority of reported symptoms were subjective in nature. Six weeks and 6 months after thyroidectomy, 42% (n = 11) and 17% (n = 4) of participants, respectively, reported continued swallowing symptoms using the prompts; 12% (n = 3) discussed symptoms without prompting cards at both time points.

Conclusions and Relevance

Swallowing symptoms after thyroidectomy are underreported in the literature. This study revealed that as many as 80% of patients who have thyroidectomy may experience swallowing-related symptoms after surgery, and many develop compensatory strategies to manage or reduce the burden of these symptoms. Considering the large number of individuals who may experience subjective dysphagia, preoperative counseling should include education and management of such symptoms.

This patient open-interview study attempts to characterize the effect of swallowing-related symptoms after thyroidectomy on patient quality of life and related outcomes.

Introduction

Thyroid cancer rates have increased at least 3-fold across the last few decades, with over 63 000 incident cases diagnosed annually. The primary treatment modality for thyroid cancer is total thyroidectomy. Swallowing complaints are common after surgery, but patients are generally counseled that symptoms should spontaneously resolve within the immediate 2-week postoperative period. Mechanistically, postoperative swallowing dysfunction can affect the oropharyngeal and pharyngoesophageal phases, often resulting in globus sensation, choking, psychological stress, and reduced quality of life.

Informed consent prior to thyroidectomy tends to focus on cancer extirpation, surgical healing, and potential complications. The most common adverse effects and complications cited during this process are vocal fold paralysis and hypocalcemia. Dysphagia complaints may be discussed, but they are typically considered transient and thus are often minimized during preoperative counseling. Nonetheless, postthyroidectomy dysphagia has been documented. Objective dysphagia can be managed with swallow therapy and, in select circumstances, surgical intervention (eg, laryngoplasty). Dysphagia complaints despite normal findings on objective instrumental swallowing evaluation (ie, subjective dysphagia) have few management options beyond reassurance and compensatory (or management) strategies but can have substantial quality-of-life consequences.

Previous attempts to assess the nature and prevalence of subjective dysphagia have used dysphagia-related patient-reported outcome (PRO) measures, the content of which should derive directly from the patients. Unfortunately, a thematic deficiency in dysphagia PRO measures is lack of patient involvement in content development. In fact, to our knowledge, no study has characterized subjective postthyroidectomy dysphagia from the patients’ perspective or emphasized how it affects their quality of life. A rigorous qualitative approach is required to understand postthyroidectomy subjective dysphagia. The present study investigates this gap in knowledge using grounded theory analysis of semistructured interviews with patients who underwent total thyroidectomy for papillary thyroid cancer.

Methods

Each patient signed a consent form prior to any study-related procedures. The qualitative data reported herein were derived from a clinical trial approved by the University of Wisconsin Health Sciences institutional review board (NCT02138214). All participants also provided written informed consent to participate in the present interview study and to have their responses recorded and published.

Patient Population and Inclusion Criteria

Participants were recruited from an ongoing randomized clinical trial concerning surgical management of thyroid cancer. Inclusion criteria were (1) age 21 to 73 years, (2) a diagnosis of papillary thyroid cancer without cervical or distant metastases, (3) having undergone total thyroidectomy with recurrent laryngeal nerve monitoring, and (4) the ability to read and write in English. Exclusion criteria were (1) preexisting vocal fold abnormalities (eg, polyps, nodules) and/or any neurological condition affecting voice or swallowing ability or (2) new-onset vocal fold paresis or paralysis lasting longer than 6 months after the total thyroidectomy procedure.

Semistructured Interviews

All consenting participants participated in semistructured interviews at 2 weeks, 6 weeks, and 6 months after total thyroidectomy. Interviews were conducted by trained interviewers who were not involved in their clinical care. Interviewers underwent a week-long standardized training session in open-ended interview techniques and in how to use the interview guide (see interview guide in the Supplement). All interviewers also attended monthly data quality meetings led by an expert in qualitative research design (C.M.) at which selected transcripts were reviewed and consistent approaches to follow-on probes were established. Interview guides at all time points combined open-ended questions with standardized prompts. Each interview took on average 1 hour and covered patient’s reflections on experiences with cancer from diagnosis through treatment and recovery, as well as experiences with postsurgical complications (see patient handout in the Supplement).

Symptom Identification and Assessment

The interview used 2 different methods to query participant symptoms. The first approach used open-ended questions to elicit symptoms that came to mind unprompted, such as “how have you been feeling since your last interview?” or “what physical changes have you noticed?” The second method used prompts in which participants were presented with a stack of cards listing a range of common postthyroidectomy symptoms. These symptoms were chosen after a review of the literature was performed and commonly reported symptoms experienced by patients after thyroidectomy were noted. This list was inductively reviewed with a separate, pilot subset of patients who had undergone thyroidectomy but who were not part of the present study: 6 patients with thyroid cancer (5 women and 1 man; age range, 21-75 years) recruited from the endocrine surgery clinic for pilot postthyroidectomy interviews designed to test the interview guides. Two were interviewed 2 weeks postoperatively, and 2 were interviewed at the 6-month follow-up visit. Common postoperative symptoms were then collected and used as the prompts in the stack of prompt cards.

Study participants were asked to identify the cards representing symptoms that they currently were experiencing or had experienced in recent weeks. Multiple cards listed dysphagia-related symptoms, including “choking,” “coughing,” “hard to chew,” “hard to swallow,” “lump in throat,” and “trouble swallowing,” and interviewers recorded the frequency of each complaint in a separate symptom log. Resultant data were used to measure symptom type and frequency at each time point (2 weeks, 6 weeks, and 6 months postoperatively). This approach allowed us to compare unprompted vs interviewer-prompted symptom complaints. Interview data were analyzed inductively using a grounded theory approach.

Grounded Theory Analysis

Interviews were deidentified and transcribed verbatim. Research team members (C.M., J.O., R.S., and N.P.C.) performed line-by-line open coding of a subset (n = 15) of transcripts at all time points to ascertain emergent themes. This process yielded a set of 225 focused codes, which were then applied to the entire data set using NVivo software (QSR International). Coders underwent a 4-day training session in NVivo 11. To assure strong inter-coder reliability, every fourth transcript was commonly coded by all coding team members, and differences in coding were adjudicated by consensus at biweekly coding meetings; the team of 6 coders achieved and maintained an excellent inter-coder reliability (κ = 0.79). Dysphagia or swallowing-related codes were analyzed inductively using data from the first 26 participants enrolled.

Instrumental Swallow Evaluation

Potential participants were seen preoperatively for a swallow evaluation before total thyroidectomy when thyroid cancer was suspected. If swallowing-related counseling or interventions were deemed appropriate, these were discussed with participants at this time. Patients also provided their written informed consent prior to this evaluation and were given an identification number. After thyroid cancer was confirmed via biopsy, only those participants with confirmed papillary thyroid cancer were included in this study. Patients with all other cancers were excluded from any follow-up interviews.

At the 2-week postoperative interview, all participants underwent a complete swallowing evaluation, including a modified barium swallow study to acquire objective data about swallowing function. Repeat testing was performed at subsequent time points if the modified barium swallow study indicated a Penetration Aspiration Score (PAS) greater than 2 or if reassessment was indicated based on clinical impression.

Results

Participants

Of the 26 participants who met inclusion criteria, 18 were women (69%); the mean (SD) age was 46.4 (14.1) years; and mean (SD) tumor diameter was 2.2 (1.4) cm (Table 1). Each participant was interviewed for a mean of 60 minutes per session (range, 45-120 minutes; total combined interview time, 73 hours 36 minutes; Table 1). At the 2-week postoperative visit, the majority of participants (22 of 26; 85%) had a PAS of 1, indicating no swallowing impairment. Only 2 participants (8%) (participants 39 and 44) qualified for a follow-up swallowing evaluation. Loss to follow-up was low. Only 2 participants declined further participation, one citing burdensome length of time for study procedures as reason for discontinuing, and the other citing a change in insurance that affected eligibility for treatment.

Table 1. Clinical Characteristics of 26 Study Participants.

Characteristic	Value
Age, mean (SD) (range), y	46.4 (14.1) (21-73)
Female, No. (%)	18 (69)
White race, No. (%)	25 (96)
Tumor size, mean (SD) (range), cm	2.2 (1.4) (0.4-5.5)
Postoperative data
Calcium level, mean (SD) (range), mg/dL	9.3 (0.7) (7.5-11.2)
Parathyroid hormone level, mean (SD) (range), pg/mL	36.2 (40.2) (2-192)
Transient hypoparathyroidism,a No. (%)	4 (15)
PAS <1, No. (%)	4 (15)
Temporary vocal fold paresis,b No. (%)	3 (12)

Abbreviations: IQR, interquartile range; PAS, Penetration Aspiration Score.

^aTransient hypoparathyroidism was defined in this study as calcium levels below 8.0 mg/dL and parathyroid hormone levels below 15 pg/mL.

^bVocal fold paresis resolving within 6 months of total thyroidectomy.

Dominant Themes

Inductive analysis of participant interviews yielded 2 emergent themes: (1) dysphagia symptoms were a cause of concern, and (2) participants self-discovered compensatory and coping strategies to reduce their dysphagia symptoms (Table 2). Complaints of dysphagia postoperatively were reported by 80% of participants (n = 20); however, only 4 participants had a PAS greater than 1, with only 2 of these 4 qualifying for a repeat evaluation of swallowing. In other words, 80% had subjective dysphagia symptoms affecting their quality of life (n = 20), and many participants self-initiated compensatory strategies to reduce symptoms.

Table 2. Subjective Dysphagia Symptoms and Coping Strategies Reported by Study Participants.

Postoperative Follow-up	Self-described Dysphagia Symptoms	Coping Strategies
2 Weeks	“I had a sore throat, so eating was difficult… and it did get better… but it did interfere… not really wanting to eat, and not getting the nutrition I should have been getting” (participant 37). “It’s like there’s something stuck there. And that’s what it feels like if I eat and go too fast, and it just piles up there” (participant 32). “I used to be able to take a handful of pills… [now] I can’t take more than two at a time” (participant 11).	“Yeah, it interfered with eating… I couldn’t really eat solid foods for a while until it got better” (participant 21) “I just have to be more conscious and take smaller bites… and chew them for thoroughly” (participant 11) “It feels like it just isn’t going down, so I just start taking a lot more fluids, then I feel like I have to kind of push it down…” (participant 28)
6 Weeks	“Sometimes when I am drinking I’ll feel, it’s not even much of a problem, with actually being able to drink, but I just feel a little pull in my neck” (participant 8).	“I don’t like fried or crunchy things because it scratches” (participant 3) “I have to chew it up smaller… the piece I used to take and chew down, you know I can’t do that anymore… I cut the regular piece in two… and I chew like crazy” (participant 4)
6 Months	It does at times feel like swallowing is not as easy as it maybe once was” (participant 28).	“Even on a little bit… I have to swallow two or three times to get it down” (participant 4)

Subjective Dysphagia

Participants reported a variety of swallowing symptoms following total thyroidectomy, and the frequency of complaints varied based on ascertainment method: open-ended query vs symptom card prompts (Table 3); representative quotes can be found in Table 4.

Table 3. Frequency of Swallowing Symptoms Reported by Study Participants.

Symptom	Open/Prompt Version, No. (%)
	2 Weeks	6 Weeks	6 Months
Painful swallowing	12 (46)/NR	2 (8)/NR	NR/NR
Lump in throata	2 (8)/12 (48)	NR/7 (27)	NR/2 (8)
Coughinga	NR/11 (44)	NR/3 (12)	NR/1 (4)
Trouble swallowinga	NR/9 (36)	NR/6 (23)	NR/1 (4)
Increased effort	7 (27)/7 (28)	NR/1 (4)	NR/NR
Food getting stuck	4 (15)/NR	NR/NR	2 (8)/NR
Choking sensationa	1 (4)/3 (12)	1 (4)/3 (12)	1 (4)/1 (4)
Difficulty with pills	3 (12)/NR	NR/NR	NR/NR
Hard to chewa	NR/2 (8)	NR/NR	NR/NR
Overall	14 (53)/20 (80)	3 (12)/11 (42)	3 (12)/4 (17)

Abbreviation: NR, no response (item was either not discussed in the open interview or was not prompted).

^aInterviewer used issued prompts to inquire about symptom.

Table 4. Representative Quotes From Participants Describing Dysphagia Symptoms Postthyroidectomy.

Symptom	Follow-up	Direct Quote
Painful swallowing	2 weeks	“I had to take [oxycodone] for longer than I wanted to because of the sore throat just … I couldn’t bear it kind of thing…it was just very uncomfortable, and I could barely eat anything and you know, I had the sore throat so like you know, you can have soup, you can have milk, and that’s it, you know.” (participant 21)
	2 weeks	“ …anytime I’d swallow, or even just, you know, you just kind of move around in bed…like the throat area would hurt … It’s hard to not think about. Um, when you’re throat’s hurting… Yeah. And you can’t just decide you’re not going to swallow.” (participant 28)
Lump in throat	2 weeks	“Sometimes, like when I swallow, I feel like something is there inside the throat…” (participant 12)
Food stuck	2 weeks	“…how do you even describe that? Like it was kind of like closed off, and it was just like I was forcing something to like go down really slow. It’s like it wouldn’t go, and it just like, oh my God, this feels like it’s stuck. But it wasn’t. It went down. But it was just like, oh my God, it just really, really hurt.” (participant 20)
	6 months	“I’ll take a bite of something. I’ll chew it up, and swallow, and it doesn’t go down. It goes halfway down. It sticks, and it kinda cuts off my breathing.” (participant 4)
Increased effort	2 weeks	“The trouble swallowing it just, like I said…all these muscles are just so sore that it just was hard to swallow.” (participant 5)
	6 weeks	“But it takes like, takes 2 times, sometimes, to swallow.” (participant 4)

See Table 2 for more representative participant quotes.

Open-ended Questions

In response to open-ended questions, 53% of participants shared swallowing complaints at the 2-week postoperative visit (n = 14), with 12% (n = 3) reporting persistent swallowing issues at each of the 6-week and 6-month interviews. The most common symptom reported in the open interview format 2 weeks postoperatively was painful swallowing (46%; n = 12). Complaints at the 6-week and 6-month assessment were highly varied, but the common symptoms reported were discomfort with swallowing (8% at 6 weeks; n = 2) and the sensation of food getting “stuck” (8% at 6 months; n = 2). Some participants’ symptoms manifested as a sensation of choking (4% each at 6 weeks and 6 months; n = 1). Exemplifying this was 1 participant who shared “one time I thought I was actually gonna choke to death” (participant 4).

Symptom-Card Prompted Questions

When prompted by the symptom cards, more participants reported swallowing complaints. At the 2-week interview, 80% had 1 or more swallowing complaints (n = 20), while 42% (n = 11) and 17% (n = 4) reported 1 or more persistent complaints at the 6-week and 6-month interviews, respectively. The most commonly reported individual symptoms identified 2 weeks postoperatively were “lump in throat” (48%; n = 12), “coughing” (44%; n = 11), and “trouble swallowing” (36%; n = 9). At both 6 weeks and 6 months, “lump in throat” was the most commonly identified symptom from the prompts (27% at 6 weeks [n = 7] and 8% at 6 months [n = 2]).

Compensatory Strategies for Management of Subjective Dysphagia

A second theme extracted from patient interviews was participant-initiated adaptive strategies to minimize their swallowing symptoms (Table 5). These strategies were reported at each follow-up time during the open-ended interview portion. Strategies were mentioned by 35% of participants 2 weeks postoperatively (n = 9), which reduced to 8% (n = 2) at 6 weeks and 4% (n = 1) at 6 months. The most common strategy was to take smaller bites. As one participant stated at her 6-month interview, swallowing was not the same as before the procedure: “I have to take smaller bites of things … if I take less [I don’t] choke that much” (participant 4).

Table 5. Compensatory Strategies Used to Compensate for Subjective Swallowing Complaints 2 Weeks After Total Thyroidectomy.

Strategy	Description	Sample Quote
Altering diet (n = 9)	Changing diet choices to select foods that are easier to swallow or “feel better” on the throat	“Yeah, it interfered with eating, I’d say. Like I couldn’t really eat solid foods for a while until it got better.” (participant 21)
Changing chewing pattern (n = 3)	Using more cycles during chewing, taking smaller bites, more careful chewing	“I just have to be more conscious and take smaller bites…and chew them for thoroughly.” (participant 11)
Water washes (n = 4)	Using water or another thin liquid to help clear residue during or after a meal	“It feels like it just isn’t going dow, so I just start taking a lot more fluids, then I feel like I have to kind of push it down…” (participant 28)

Discussion

To date, postthyroidectomy dysphagia has not been well characterized. The goal of this study was to better understand the prevalence of postoperative dysphagia symptoms among patients who have undergone total thyroidectomy for papillary thyroid cancer, directly from the patient’s perspective using rigorous qualitative research methods. We used multiple approaches to ascertain the patient experience related to their postoperative swallow function using both open-ended interviews and interviewer prompts longitudinally over 6 months.

Our findings suggest that dysphagia symptoms are more common than previously reported and that they can persist for months following surgery. Specifically, we found that at least 80% of patients had dysphagia symptoms 2 weeks postoperatively (n = 20) and, while that percentage reduced over the 6-month study period, dysphagia symptoms persisted in some cases, suggesting that further surveillance of these symptoms may be required. Interestingly, these symptoms rarely had objective correlates on instrumental swallowing assessment. Thus, the best way to understand these symptoms is by surveying and listening to patients using qualitative approaches.

Swallowing symptoms and persistence of complaints reported in our study, including sensation of residue, painful swallowing, and difficulty swallowing, are consistent with previous studies of patients following thyroidectomy. However, in contrast to previous studies, which used cross-sectional or retrospective methods, ours was designed a priori to assess the longitudinal nature of dysphagia complaints. This study also allowed patients to describe what they were experiencing and the affect these symptoms had on quality of life in their own words.

Our study is the first to chronicle how patients adapt to and self-manage their dysphagia complaints postthyroidectomy. Participants described adaptive behavioral strategies to minimize dysphagia at each assessment time. Compensatory strategies used by our participants are consistent with clinical recommendations for patients who are experiencing dysphagia or increased residue in the valleculae and pharynx. In some cases, these strategies were used in response to choking incidents, as evidenced by participant 4, who gained increased awareness for the need to take smaller bites after experiencing sensations of choking. Participants reported having concerns about what they were able to eat, how they would get enough nutrition, the unpleasantness of painful swallowing, and anxiety about choking when not implementing strategies. These reports clearly show that swallowing symptoms can have a significant effect on quality of life, which resulted in expressions of anxiety, frustration, and insecurity.

It is also important to note that the frequency of symptoms differed depending on the ascertainment methodology. Participants were not always forthcoming about swallowing complaints during the open interview. The frequency of dysphagia complaints was much higher during the prompted portion of the 2-week postoperative interview: 80% (n = 20) via prompts vs 53% (n = 14) via open interview. In fact, this was true across all time points (6 weeks: 42% [n = 11] via prompts vs 12% [n = 3] via open interview; 6 months, 17% [n = 4] via prompts vs 12% [n = 3] via open interview). This suggests that patients may not openly share their subjective dysphagia complaints with clinicians. Underreporting by patients may explain why clinicians may not be sufficiently aware of the dysphagia sequelae of thyroidectomy. Based on the commonness of these symptoms of dysphagia, surgeons and other clinicians interacting with patients preoperatively should discuss the potential risk of dysphagia and explicitly query for swallowing concerns in the postoperative period.

Surprisingly few participants had objective swallowing dysfunction on a modified barium swallow study despite the frequency of swallowing complaints. Specifically, only 4 participants at the 2-week follow-up visit were found to have a PAS greater than 1. This contrasts with the 80% of participants (n = 20) who complained of dysphagia at this time point. Subjective dysphagia is often minimized by clinicians because these patients are considered “safe” and not at risk for aspiration. However, these complaints should not be ignored because, as our results show, subjective dysphagia can have a major impact on a patient’s quality of life. Subjective dysphagia can be very troubling for patients and may be compounded by a lack of counseling or suggested strategies to help reduce the impact of these symptoms on daily life.

From the time of diagnosis, patients with thyroid cancer are bombarded with an overwhelming amount of information. More research is needed to determine the best way to introduce swallowing symptom management, so patients may process and use the information to their benefit. One option is to provide an informational handout about potential swallowing symptoms they may experience postoperatively along with helpful strategies (based on patient experiences) to combat these symptoms. One example of how this handout could be structured is shown in the Supplement. It may also be helpful offer contact information for speech-language pathologists who can further aid in counseling patients whether preoperatively or postoperatively about swallowing strategies.

Limitations

While data in this study only report on patient outcomes up to 6 months postoperatively, it is possible that dysphagia symptoms have greater chronicity than our study was designed to capture. Additionally, our study focuses only on patients who did not have consequences of permanent nerve injury. Estimates of dysphagia with this type of procedure would undoubtedly be higher if patients with vocal fold dysfunction after total thyroidectomy were included.

Conclusions

Subjective dysphagia complaints after thyroidectomy are more common than previously reported and can persist for months following surgery. Currently, patient expectations and education in management strategies are insufficient. Increased awareness of swallowing sequelae and education for patients who undergo thyroidectomy would help reduce the anxiety, frustration, and insecurity surrounding postoperative dysphagia.

Supplement.

Patient handout and interview guide