Patient handout and interview guide
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Krekeler BN, Wendt E, Macdonald C, et al. Patient-Reported Dysphagia After Thyroidectomy: A Qualitative Study. JAMA Otolaryngol Head Neck Surg. 2018;144(4):342–348. doi:10.1001/jamaoto.2017.3378
How common is postthyroidectomy dysphagia, and how is it characterized by patients and by instrumental evaluation during the first postoperative year?
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.
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.
It is important that clinicians understand consequences of thyoridectomy on swallowing from the patient perspective to better care for this population.
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.
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.
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.
Thyroid cancer rates have increased at least 3-fold across the last few decades,1,2 with over 63 000 incident cases diagnosed annually.3 The primary treatment modality for thyroid cancer is total thyroidectomy.4-8 Swallowing complaints are common after surgery, but patients are generally counseled that symptoms should spontaneously resolve within the immediate 2-week postoperative period.9 Mechanistically, postoperative swallowing dysfunction can affect the oropharyngeal and pharyngoesophageal phases,5,10 often resulting in globus sensation, choking, psychological stress, and reduced quality of life.5,8,10,11
Informed consent prior to thyroidectomy tends to focus on cancer extirpation, surgical healing, and potential complications.4,12 The most common adverse effects and complications cited during this process are vocal fold paralysis and hypocalcemia.12 Dysphagia complaints may be discussed, but they are typically considered transient and thus are often minimized during preoperative counseling.6,8 Nonetheless, postthyroidectomy dysphagia has been documented.7,10,11,13 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.14,15 Unfortunately, a thematic deficiency in dysphagia PRO measures is lack of patient involvement in content development.14 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.
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.
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.
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).
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.
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).16 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).16 Dysphagia or swallowing-related codes were analyzed inductively using data from the first 26 participants enrolled.
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.17
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.
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.
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.
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).
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]).
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).
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 reported5-7 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.5,7,10,11,13 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.18-20 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.9,21 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.
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.
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.
Corresponding Author: Brittany N. Krekeler, MS, University of Wisconsin Medical Sciences Center, 1300 University Ave, Room 483, Madison, WI 53706 (firstname.lastname@example.org).
Accepted for Publication: December 22, 2017.
Published Online: March 8, 2018. doi:10.1001/jamaoto.2017.3378
Author Contributions: Drs Connor and Sippel had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Study concept and design: Wendt, Macdonald, Orne, Sippel, Connor.
Acquisition, analysis, or interpretation of data: All authors.
Drafting of the manuscript: Krekeler, Francis.
Critical revision of the manuscript for important intellectual content: All authors.
Statistical analysis: Krekeler, Wendt, Francis.
Obtained funding: Sippel, Connor.
Administrative, technical, or material support: Wendt, Francis, Sippel, Connor.
Study supervision: Macdonald, Orne, Francis, Sippel, Connor.
Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. No disclosures were reported.
Funding/Support: During the conduct of this study, Ms Wendt and Drs Orne, Sippel, and Connor report receiving grants from the National Institutes of Health (NIH); Ms Wendt received grant support from the University of Wisconsin Carbon Cancer Center (UWCCC); Dr Connor received grant support from the National Cancer Institute. This study was funded by the National Institutes of Health (R01CA176911), UWCCC Support Grant (P30 CA014520), and the Voice Research Training Grant (T32DC009401). Salary support for Dr Francis was provided by grant K23DC013559 from the NIH National Institute on Deafness and Other Communication Disorders.
Role of the Funder/Sponsor: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.
Meeting Presentation: This article was presented in oral format at the American Speech and Hearing Association Annual Meeting; November 18, 2016; Philadelphia, PA.
Additional Contributions: We acknowledge the valuable contributions of all those involved in the clinical trial who made this article possible, specifically Heidi Kletzien, MS, University of Wisconsin, Madison, and Reese Randle, MD, and Susan Pitt, MD, University of Wisconsin Hospital and Clinics, who helped in the general discussion and interpretation of findings presented in this article. Special thanks to the clinical staff at the University of Wisconsin Voice and Swallow Clinics for their guidance, generous collaboration, and steadfast commitment to improving care for this patient population. They received no compensation for their contributions beyond that received in the normal course of their employment.