Abstract
Background:
We sought to better understand the experience of patients with transient hypoparathyroidism utilizing patient interviews and quality of life (QOL) surveys.
Methods:
This is a prospective analysis of 62 patients after total thyroidectomy at a high-volume institution. Semi-structured patient interviews and QOL surveys were conducted preoperatively and postoperatively at 2 weeks, 6 weeks, 6 months, and 1 year and compared based on postoperative parathyroid hormone (PTH) levels.
Results:
Postoperative PTH levels were <10 pg/mL in 32% of patients (n=20), 10–20 pg/mL in 19% (n=12), and >20 pg/mL in 48% (n=30). Hypocalcemic symptoms at 2 weeks were reported in 28 of 55 patients (51%), but patients felt “well prepared” and reported it “wasn’t a big deal.” If symptoms persisted at 6 weeks, they became more bothersome. At 6 months and 1 year, patients reported calcium supplementation prevented most symptoms and did not interfere with daily activities. QOL as measured by the European Organization for Research and Treatment of Cancer (EORTC) and the 12-Item Short Form Survey (SF-12) demonstrated a slight improvement at 1 year postoperatively regardless of PTH level.
Conclusions:
Early postoperative transient hypoparathyroidism is common but when appropriately managed, did not have a substantial negative impact on overall QOL.
Graphical Abstract
We sought to better understand the experience of patients with transient hypoparathyroidism utilizing patient interviews and quality of life (QOL) surveys. This study is important because transient postoperative hypoparathyroidism, when appropriately managed, did not have a substantial negative impact on overall QOL.
Introduction
The most common risk after a total thyroidectomy (TT) for differentiated thyroid cancer is transient hypoparathyroidism caused by either inadvertently removing or devascularizing parathyroid glands during the dissection (1). The rate of this complication widely varies across institutions from 3–53% for many reasons including differences in patient-reported symptoms, treatment modalities, and definitions used (1–3). Much data exist to demonstrate that long-term hypoparathyroidism is a difficult condition to manage, and many studies report a negative impact on quality of life (QOL) (4–7). No complimentary data exist for transient hypoparathyroidism, and despite the frequency of this complication, little is known about the symptom burden patients experience in the immediate postoperative period and the impact those symptoms have on their QOL.
As surgeons, we try our best to prevent transient hypoparathyroidism after thyroid surgery, and when this complication occurs, we strive to educate patients and to treat it effectively. Transient hypoparathyroidism presents a therapeutic challenge, however, because many different treatment protocols exist due to variations in reported rates and other contributing risk factors (1, 8). Furthermore, the limited, postoperative follow-up that most patients have with their surgeons may influence the communication of patient-reported symptoms or challenges, and therefore the impact of this complication may not be well understood.
The aim of our study was to follow a cohort of patients who underwent a TT for differentiated thyroid cancer and generate a comprehensive data set to investigate the true patient experience of transient hypoparathyroidism in order to highlight the impact on QOL over time and to identify opportunities to improve the management of this condition.
Methods
This prospective study evaluated 62 patients who underwent TT for thyroid cancer as part of an ongoing randomized clinical trial (NCT02138214) comparing outcomes of TT versus TT with central neck lymph node dissection at a single, high-volume institution between June 2014 and June 2019. Patients’ ages ranged from 21–73 years, 77% were female, and all had a preoperative diagnosis of or very high suspicion for papillary thyroid cancer >1cm in size. No patients had preoperative evidence of lymph node or distant metastatic disease. A total of 112 patients were enrolled, 18 withdrew before operation, and 94 underwent operative treatment. At the time of operation, 13 patients were excluded due to failure of the protocol screening, 17 were excluded because they had either concurrent hyperparathyroidism and underwent intentional parathyroidectomy or underwent thyroid lobectomy instead of TT. Two additional patients withdrew due to loss of follow-up and noncompliance with suggested medications. All patients included underwent a total thyroidectomy and 45.2% (n=28) also had an ipsilateral central neck dissection. The Institutional Review Board of the University of Wisconsin–Madison Health Sciences approved this study, and all participants provided HIPPA compliant written informed consent before surgery.
Qualitative and quantitative clinical data were collected on all patients preoperatively and postoperatively at 2 weeks, 6 weeks, 6 months, and 1 year. At each time point, patients underwent laboratory testing, semi-structured interviews, and completed QOL questionnaires.
Clinical Laboratory Testing
Parathyroid hormone (PTH) levels and serum calcium concentrations were collected at baseline and postoperatively at 2 weeks, 6 months, and 1 year while PTH was also collected immediately postoperatively at 1 hour. Postoperative PTH levels within 1–4 h have been proven to predict accurately which patients will develop hypocalcemia (1, 9), and these data were used to apply our institutional PTH treatment protocol. This protocol specifies that all patients undergoing TT are prescribed calcium carbonate as needed for any symptoms of hypocalcemia. Patients with 1-h postoperative PTH <20 pg/mL receive scheduled calcium carbonate, 1,000 mg 2 times daily. Those with PTH <10 pg/mL receive the same dose of calcium carbonate and additional calcitriol at 0.25mcg 2 times daily. Those with an undetectable PTH (<4 pg/mL) receive the same dose of calcium carbonate and a greater dose of calcitriol at 0.5mcg 2 times daily. In order to evaluate the effect of transient hypoparathyroidism on patient experiences and QOL, patients were divided into 3 “PTH groups:” 1-h postoperative PTH <10 pg/mL, 10 – 20 pg/mL, and >20 pg/mL. Patients are counseled about the possibility of postoperative hypoparathyroidism, and our treatment protocol is reviewed in their preoperative and postoperative teaching which is done both verbally and in a written form. All medication instructions are reviewed and confirmed at the time of discharge and again by nursing staff phone calls on postoperative day 1.
Interviews
All enrolled patients participated in semi-structured interviews with independent interviewers trained in qualitative methods. The structure of the interview began with open-ended questions exploring symptoms, mood, and medication experiences. This interview was followed by an activity in which interviewers presented a stack of 37 index cards, or “symptom cards” on which were written typical, post-thyroidectomy symptoms (Appendix A). Four of these cards listed symptoms of potential hypoparathyroidism (muscle cramps, muscles hurt, numbness and tingling, twitching). Patients were instructed to pull out the symptom cards they were experiencing and rank each as least, middle, or most bothersome. Interviewers then probed further about their most bothersome symptoms and any potential symptoms of hypocalcemia associated with hypoparathyroidism. The same interview structure was used at every time point, though the interview guides varied slightly to capture time point-specific treatment and recovery experiences of the patient (Appendix A). Interviews were de-identified and transcribed verbatim.
A coding structure was developed using a grounded theory approach and applied as described in prior qualitative studies (10–12). Intercoder reliability was excellent (k=0.79) (NVivo 11, QSR International software). In order to gain a focused understanding of study patients’ hypoparathyroidism experiences, the team conducted a second wave of qualitative analysis using a process of directed content analysis to analyze the interview text coded as typical symptoms of potential hypoparathyroidism (13, 14). Utterances with these codes were reviewed for emergent themes, which were then compared and contrasted among 1-h postoperative PTH groups at each time point (2 weeks, 6 weeks, 6 months, and 1 year postoperatively). Two of the authors, an endocrine surgeon and a nonclinical qualitative researcher (A.D. and S.R.), reviewed the interview data and achieved consensus on the key themes discussed here through iterative discussion. Data saturation was achieved in the analysis of the transient hypoparathyroidism experience/symptoms but not in permanent hypoparathyroidism due to the small number patients (n=3) who developed this complication.
Quality of Life Surveys
All enrolled patients completed QOL surveys preoperatively and at every postoperative time point, and individual scores were documented. The QOL measures used in this study were validated and included the European Organization for Research and Treatment of Cancer (EORTC) QLQ-C30 version 3, which gives a global QOL score for cancer patients on a scale 0–100, and the 12-Item Short Form Survey (SF-12) which included separate physical and mental scores, again on a scale of 0–100 with a national average score of 50. Mean QOL scores were calculated for the entire cohort and for each PTH group at every time point; these average scores were then used to analyze any trends over time and any differences between PTH groups.
Statistical Analysis
Chi-squared analysis was used to evaluate the difference in frequency of pulling symptom cards related to hypocalcemia amongst the 3 PTH groups. A one-way ANOVA analysis was used to compare the mean QOL scores of each PTH group to one another at every time point in each of the two QOL measures used, the EORTC, SF-12 physical, and the SF-12 mental. A paired t-test was used to compare the mean QOL scores of the entire cohort from preoperative baseline to 1 year postoperatively, again for each of the QOL measures. Calculations were made with IBM SPSS statistics software for Windows, version 26 (IBM Corp., Armonk, N.Y., USA).
Results
After the TT, 20 (32%) patients had a 1-h postoperative PTH <10 pg/mL, 10 of whom had undetectable PTH levels. There were 12 (19%) patients who had a PTH 10–20 pg/mL, and 30 (48%) patients who had PTH >20 pg/mL. All patients were treated according to our institutional postoperative PTH protocol. Mean serum calcium levels were normal at each time point, and only 4 patients (7%) had a serum calcium concentration of <8.5 mg/dL at 2 weeks. Symptoms of hypocalcemia were described most often as numbness and/or tingling in the hands or peri-oral region by means of symptom cards labeled “numbness and tingling.” Three of the 62 patients (5%) had a persistent PTH level <10 pg/mL at 6 months, so they were considered to have permanent hypoparathyroidism. No patients were readmitted or went to the emergency room for hypocalcemia treatment.
Impact on QOL based on postoperative PTH levels
The impact of postoperative hypoparathyroidism on QOL as scored by the EORTC and the SF12 is shown in FIGURES 1, 2, and 3. The EORTC scores showed a similar trend in all patients regardless of postoperative PTH group. Mean scores of the entire cohort increased a small but statistically significant amount from preoperative baseline to 1 year postoperatively (10%, p=0.003). There was no meaningful difference, however, in mean scores between PTH groups at any time point (FIGURE 1).
FIGURE 1:
Global EORTC QLQ-C30 (version 3) QOL scores for each PTH category. There is a statistically significant increase in mean QOL scores for the entire cohort from baseline preoperatively to 1 year postoperatively (p=0.003).
* There is no statistically significant difference in mean scores between different PTH groups at any postoperative time point, p=not shown (NS).
FIGURE 2:
SF-12 Physical QOL scores for each PTH category.
* There is no statistically significant difference in mean QOL scores for the entire cohort from baseline preoperatively to 1 year postoperatively or in mean scores between different PTH groups at any postoperative time point, p=not shown (NS).
FIGURE 3:
SF-12 Mental QOL scores for each PTH category. There is a statistically significant increase in mean QOL scores for the entire cohort from baseline preoperatively to 1 year postoperatively (p=0.010).
* There is no statistically significant difference in mean scores between different PTH groups at any postoperative time point, p=not shown (NS).
The SF-12 physical scores showed a very similar trend within all PTH groups. All patients initially reported a decrease in physical scores of approximately 10% at 2 weeks postoperatively but trended up after that time point. Mean scores for the entire cohort tended to showed a slight improvement from preoperative baseline to 1 year postoperatively, and there was slight variation between PTH groups at each time point, but none were statistically significant (FIGURE 2).
The SF-12 mental scores showed the greatest variability. All PTH groups improved by approximately 5% at 2 weeks postoperatively. By 6 weeks, patient scores in the PTH groups <10 pg/mL and 10–20 pg/mL decreased approximately 5%, while the patients’ scores with PTH >20 pg/mL remained relatively steady. Overall mean scores showed a small improvement from preoperative baseline to 1 year postoperatively, (5%, p=0.010), but again, there were no meaningful differences between PTH groups at any time point (FIGURE 3).
In this study, only 3 patients experienced permanent hypoparathyroidism. When we examined the QOL trends of just those 3 patients, their data tracked similarly with slightly lower scores at the earlier time points on the SF-12 Mental and EORTC, but by one year had values comparable to the entire cohort (data not shown).
Qualitative Analysis
Semi-structured interviews were performed at each time point. An interview analysis including exemplary quotes of patient experiences with hypoparathyroidism and the key themes identified characterizing patient-reported challenges and suggested solutions is outlined in TABLE 1, and a graphic timeline of this analysis is exhibited in FIGURE 4.
TABLE 1:
Interview analysis and exemplary quotes of patients’ experiences with hypoparathyroidism and the key themes identified characterizing patient-reported challenges and suggested solutions.
| Patient-reported Challenges | Exemplary Quotes (subject #, postoperative time point) | Suggested Solutions |
|---|---|---|
|
Minor Symptoms - Symptoms easily manageable |
“I had numbness and tingling twice. I know I can take Tums and get rid of it. The effort does not bother me.” (66, 2 week) |
Perioperative Patient Education and Counseling: - Self-management of symptoms |
| “It honestly was not like a big symptom. It wasn’t like, Oh no! I have to call the police!” (80, 2 week) | ||
| “Fairly soon after the surgery my face was really tingly, and then [I ate] the Tums, and it just cleared right up. Amazing, it’s just amazing.” (42, 6 week) | ||
| - Knew what to expect | “There wasn’t anything that I experienced that they didn’t mention.” (13, 2 week) | - Signs of hypocalcemia |
| “The numbness and tingling, it’s present but it’s not stopping me, not impacting my life. I feel it, it annoys me, but it doesn’t make me not go to the grocery store or to work. I know why it’s happening.” (18, 2 week) | ||
| - Felt supported | “When I called the clinic, everyone was really helpful. I felt totally taken care of and supported.” (56, 2 week) | - Available clinical support |
|
Major Symptoms - Interference with life |
“My hands were numb and tingling. They almost started cramping up, so I didn’t think I could safely drive because my hands hurt so much.” (56, 2 week) |
Address Educational Gaps: - Prepare for symptom likelihood & intensity - Have calcium available for breakthrough symptoms |
| “There was a lot of tingling and cramping in the arms with carrying bags of groceries or going up the stairs.” (22, 6 week) | ||
| “I really notice it when I’m reading a book. It’s not debilitating pain, just nagging.” (6, 6 week) | ||
| “I have facial twitching. Sometimes it’s a bummer. The other day I was out for dinner and my whole face was twitching. I didn’t have Tums with me, so I had to leave.” (18, 6 week) | ||
|
Sleep Disturbance - Nighttime symptoms |
“I get numbness and tingling more noticeable at night.” (5, 2 week) | Calcium Load at Night Before Bed |
| “Interestingly enough, it happened at night. I woke up and felt really numb in my mouth and lips.” (13, 2 week) | ||
| “The cramps at night, if I take some Tums, I’m usually fine after a couple of minutes. It’s annoying more than anything,” (22, 6 week) | ||
| “In a week’s time, [I have symptoms] probably once or twice, usually at night.” (2, 1 year) | ||
| “My face will start to twitch, and then I try to overcompensate and take a ton of [Tums] right up until bed and then there’s a big period of time until the next day when there’s no [symptoms].” (18, 1 year) | ||
| - Difficult Medication Schedule | “Sometimes I’ll get up and take either my Synthroid or calcium because you can’t take the thyroid the same time as calcium, so that bothers the sleeping.” (5, 2 week) | Help Patients Establish Thyroid Hormone and Calcium Dosing Schedules |
|
Unclear Attribution of Symptoms - Muscle cramps |
“I would have like crazy cramps and tingles, but I didn’t know if that was a calcium level issue or if it was from this levothyroxine dosage.” (16, 6 week) | Establish a Mechanism for Patient Calls with Questions Beyond the 2 week Follow-up |
| “When I was on 150 mcg, I would have crazy cramps and tingles, but I didn’t know if that was a calcium level issue or if it was from this dosage. Now that I’m on 200 mcg, its better. If I don’t take calcium or take the levothyroxine too late, I’m irritable, cold and then I tingle.” (24, 6 week) | ||
|
“Numbness and tingling are pretty constant for me, and my hands and legs cramp and fall asleep a lot. I don’t know if that’s [low calcium] or what. I [wonder if] I need to see a sports medicine
doctor or a neurologist.” (18, 1 year) | ||
|
Concern/Problems with High Calcium Carbonate Intake
- Nausea - Frustration - Fear of calcium overdose - Felt self-conscious |
“I’ve been eating Tums like it’s my job, and yesterday I had a lot of nausea.” (82, 2 week) |
Substitute Calcium Citrate for Calcium Carbonate and/ or Optimize Calcium Absorption - Check magnesium - Supplement Vitamin D -Stop acid reducing medication |
| “I had to eat like half a bottle of Tums, it was gross, but eventually it all went away, and they told me to expect that. I’m just really over Tums right now.” (99, 2 week) | ||
| “I had read somewhere that it can affect the heart if you have too much.” (9, 2 week) | ||
| “I feel like they’re going to stare at me, like what is this pill popper doing?” (18, 1 year) | ||
|
Symptom Persistence - Frustration |
“I still have numbness and tingling in my hands and feet. That was all expected. It’d be nice if it was gone already, but it’s not.” (73, 6 week) |
Multidisciplinary Long-term Follow-up/Communication Between Surgeon and
Endocrinologist |
| “It’s been months and I’m still getting tingling. It’s such a weird feeling, like a fuzzy TV. I can take Tums, but I don’t, it hasn’t helped.” (44, 6 week) | ||
| “The one thing that I’ve still noticed is my calves… close to having a charley horse late at night or before I get up in the morning. When I get up and walk around, it goes away. My calcium is normal, I think my thyroid hormone is normal.” (9, 6 week) | ||
| “I’ve been a runner, but I didn’t run yesterday because my knees were hurting. Do other people feel this? That would be comforting to know.” (18, 1 year) | Patient Support Groups | |
| - Adaptation | “Calcium seems to prevent [symptoms]. When I’m good about taking everything, [symptoms occur] a couple of times a week, but if I’m not, it’s once or twice a day. I have learned.” (22, 1 year) | Establish an Effective Longterm Calcium Regimen that Best Meets Individual Needs |
| “The muscle twitches, tremors and the tingling, those are probably my least concerning [issues] because they’re infrequent.” (2, 1 year) |
FIGURE 4:
A graphical timeline of the information presented in TABLE 1: Interview analysis and exemplary quotes of patients’ experiences with hypoparathyroidism and the key themes identified characterizing patient-reported challenges and suggested solutions.
Themes at 2 week interviews
At the 2 week time point, symptom cards labeled “numbness and tingling” were pulled by 28 of 55 patients (51%) who completed the interview and 6 patients (11%) ranked these symptoms as most bothersome. Of those 6 patients, only 1 patient was hypocalcemic (serum calcium concentration < 8.5 mg/dL). Numbness and tingling symptom cards were pulled more commonly by those with PTH <10 pg/mL (n=14) compared to PTH 10–20 pg/mL (n=4) or PTH >20 pg/mL (n=10). In fact, patients with 1h postoperative PTH <10 pg/mL were almost twice as likely (RR=1.92) to pull “numbness and tingling” cards compared to those with PTH >10 pg/mL (p=0.008). Most patients declared their symptoms of numbness and tingling as manageable, we presume because they knew what to expect and felt supported by the clinical team. Typically, these symptoms did not interfere with daily activities, but some reported sleep disturbance with nighttime symptoms, difficulty with other medication compliance, or concern with tasks such as driving. Some patients were annoyed with frequent symptoms and calcium consumption. Others got nauseated from taking large volumes of calcium carbonate or had fears of overdosing on calcium (TABLE 1, FIGURE 4).
Themes at 6 week interviews
At the 6 week time point, 17 of 62 patients (27%) pulled numbness and tingling symptom cards, while only 3 (5%) ranked these symptoms as most bothersome. Of these 3 patients, there is no calcium or PTH data at 6 weeks so we could not correlate laboratory data with symptoms at this time, but we can report all 3 of these patients had PTH <10 pg/mL at 2 weeks, only 1 of whom was also hypocalcemic, and only 1 patient had persistent hypocalcemia with PTH <10 pg/mL at 6 months. Overall, symptoms of numbness and tingling were not particularly alarming due to appropriate patient education, but there was some growing discontent with the persistence of symptoms at this time point. Many found that symptoms resolved after calcium carbonate intake, but occurrences were still frequent and unpredictable. For some, symptoms started to interfere more with daily activities and nighttime symptoms remained a common theme. Many of these patients also pulled muscle cramp symptom cards and talked about thyroid hormone replacement, expressing some confusion about the etiology of their symptoms. While some of this may be misattribution of symptoms or symptoms that are unrelated to hypocalcemia, a few patients still described symptoms of numbness and tingling that resolved with calcium supplementation. These patients with normal laboratory testing may still have a relative hypoparathyroid state compared to their baseline (TABLE 1, FIGURE 4).
Themes at 6 months and 1 year
At the 6 month time point, 23 of 59 patients (40%) who completed interviews still pulled numbness and tingling symptom cards, while 5 (9%) reported them as most bothersome. Of the patients that pulled numbness and tingling cards at this time point, over 95% were not hypocalcemic on laboratory testing. There remained some discussion about muscle cramps and thyroid hormone replacement as possible etiologies, and patients were typically no longer needing to treat their symptoms with calcium.
There were 3 patients (5%) who developed permanent hypoparathyroidism and had persistent symptoms at 6 months and 1 year. At these later time points, these patients were learning to adapt to their new medication regimen. If they remembered their calcium and took extra calcium at night, it would usually prevent symptoms overnight. Two of the 3 felt there was no true interference with their daily life. One patient, however, felt distressed due to concern that the hypoparathyroidism was possibly associated with increased leg cramping which affected her exercise regimen. Overall, the symptom burden was manageable (TABLE 1, FIGURE 4).
Discussion:
Transient hypoparathyroidism is the most common complication after TT yet little is known about the symptom burden and impact on QOL for patients with this complication. Overall, we found that scores trended up from baseline to 1 year postoperatively, and there was no meaningful difference in QOL scores between PTH groups at any time point. Our evidence suggests that postoperative PTH levels do not have a substantially negative impact on QOL if the symptoms are managed appropriately. Among the patients who developed hypoparathyroidism, the symptom burden was summarized as manageable, because they were well prepared for symptom recognition and treatment through perioperative education.
Global EORTC QOL scores did not appear to be impacted by the presence of postoperative hypoparathyroidism and all scores increased by 1 year postoperatively (FIGURE 1). SF-12 physical QOL scores did decrease slightly in the first 2 weeks postoperatively for all patients (FIGURE 2), an observed phenomenon we hypothesize from normal postoperative pain and disruption of their normal life activities. Conversely, the average SF-12 mental scores increased initially, we presume due likely to relief of cancer treatment. By 6 weeks, however, we observed a slight decrease for patients with PTH <10 pg/mL and PTH 10–20 pg/mL. This decrease appeared to be related to the expectation that symptoms should have resolved by then (FIGURE 3). While the symptoms were easily managed in the initial postoperative period, the symptom burden became more problematic and was considered more interfering at 6 weeks. While the mean QOL scores from baseline to 1 year were statistically significant for the entire cohort in EORTC and SF-12 mental, this study is likely underpowered to show statistically significant differences between PTH subgroups at each time point. Therefore, it is important to review FIGURES 1–3 visually to ensure that the subtle differences noted, while not statistically significant, may not be clinically important or relevant either.
Quality of life studies on hypoparathyroidism generally conclude that the condition negatively impacts QOL (4–7). Many of these studies, however, focus on permanent or congenital hypoparathyroidism and the long-term systemic effects (4, 6, 15, 16). The majority of our study patients experienced transient hypoparathyroidism in the immediate postoperative period, which is unlikely to have the same impact as permanent hypoparathyroidism. While we did have 3 patients who developed permanent hypoparathyroidism, our study is underpowered to evaluate confidently the impact of permanent hypoparathyroidism on QOL. Furthermore, many of the hypoparathyroidism QOL studies recruit patients who are candidates for exogenous PTH therapy, none of whom our study patients would have been considered for (5–7). There is some evidence that exogenous PTH therapy in permanent hypoparathyroidism is effective to decrease the need for calcium and calcitriol supplementation and improve QOL in the long-term (6, 7, 17–19), but some authors report no benefit (20).
Our study is unique in that it provides prospective biochemical data about parathyroid function and combines our laboratory data with quantitative and qualitative QOL data analyzed by both clinical and non-clinical experts at multiple time points for up to 1 year postoperatively. This qualitative data collection from lengthy interviews (≥1 hour) is not part of a typical postoperative patient experience which may reveal data that patients are otherwise not willing or able to discuss with providers due to time constraints. We hypothesize that this opportunity to discuss their symptoms in depth at each follow-up time point may have contributed to a positive patient experience in terms of feeling supported, and thus improved QOL scores.
The treatment protocol at our institution is based on postoperative PTH levels and may be considered aggressive. This standardized treatment could contribute to variability in the frequency and severity of symptoms, but the majority of patients felt they were given the tools to manage their symptom burden effectively. The authors have found that the preoperative and postoperative teaching utilized in our department was highly effective in preparing patients for possible hypoparathyroidism by educating them about the symptoms of hypocalcemia, the likelihood of having symptoms, how to best treat breakthrough symptoms, and when and how to contact experienced medical staff who are available 24 hours a day for patient concerns. Patients knew what to expect and were empowered to manage their symptoms independently, which could contribute to why we did not see any readmissions and no negative impact on QOL scores.
Our interview data also revealed some of the challenges that patients face at certain time points postoperatively. Through our analysis of the interview data, we were able to identify what challenges arise at which postoperative time point, some gaps in patient education, and some effective strategies to help minimize the symptom burden and impact on patients (TABLE 1, FIGURE 4). Patients reported difficulty with treating nighttime symptoms with calcium carbonate, especially when instructed to take thyroid hormone replacement in the morning on an empty stomach. One solution which some patients discovered on their own is that calcium loading up until bedtime can prevent symptoms overnight and allow patients to safely and correctly take thyroid hormone replacement first thing in the morning. Other patients developed gastrointestinal side effects from the calcium carbonate, which could decrease compliance and increase symptom burden. One solution is to substitute calcium citrate for calcium carbonate. Symptomatic patients at 6 weeks were disappointed with continued symptoms and where questioning the etiology and appropriate treatment of their symptoms. Patients valued the immediate perioperative education and support, but it is important that we establish mechanisms to provide ongoing support to these patients beyond the typical 2 week postoperative follow-up appointment.
There are some limitations to this study. The QOL instruments we used are general. The EORTC instrument has been found to be reliable, valid, and suitable for use in thyroid cancer (21, 22) but is not specific to hypoparathyroidism. Other authors have also highlighted the need for a QOL instrument specific for patients with postoperative hypoparathyroidism (5, 16). Additionally, it is difficult to know when recovery of hypoparathyroidism actually occurs. Interview and laboratory data exist only at specific time points, there was no laboratory data at 6 weeks, and ongoing calcium and calcitriol intake can make calcium and PTH levels less reliable at later time points. Furthermore, it’s possible that patients experienced symptoms due to relative changes in calcium and PTH from their baseline levels, which may not be adequate to meet individual needs but are still considered biochemically “normal.” While our treatment protocol may have prevented some symptoms, our preoperative education/counseling may have also stimulated a heightened sense of awareness of symptoms. Because the symptoms of hypocalcemia are not highly specific, utilizing the symptom cards in the interviews may have triggered patients to discuss symptoms that were unrelated to their TT. This possibility was evidenced by many patients pulling “numbness and tingling” cards when they were not biochemically hypocalcemic or hypoparathyroid. Due to the small number patients (n=3) who developed permanent hypoparathyroidism, we were unable to obtain data saturation in the analysis of the impact of this complication on QOL. Finally, this population of patients underwent TT at a high-volume academic institution, and the outpatient support and education provided may not be an accurate representation of all patients undergoing thyroidectomy in the community.
Conclusion:
We measured QOL with several different instruments and found consistent results: All patients, including those who developed hypoparathyroidism had no significant negative impact on QOL, and all QOL scores returned to or just above baseline at 1 year postoperatively. Our data shows that aggressive management of postoperative hypoparathyroidism through specific calcium/calcitriol supplementation protocols, pre and postoperative education, and continued interaction with clinical staff can make hypoparathyroidism manageable and prevent negative impacts on QOL. Providers can reassure patients that, even in the event of this common complication, it is manageable if patients and clinicians work together and keep open communication about what to expect and how to best manage it.
Supplementary Material
Acknowledgments
FUNDING/SUPPORT: Support for this research included the University of Wisconsin Carbone Cancer Center Support Grant P30 CA014520 and the National Cancer Institute of the National Institutes of Health award number R01CA176911. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Footnotes
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