Salivary, lacrimal and nasal (SALANS) measure to assess side effects following radioactive iodine treatment: development, psychometric properties, and factor structure.

PURPOSE: This study aimed to develop and psychometrically evaluate a patient-reported outcome measure (PROM), SAlivary, LAcrimal, NaSal (SALANS), to document patients' symptoms after radioactive iodine (RAI) treatment for differentiated thyroid cancer (DTC). METHODS: We generated and iteratively revised SALANS items based on expert input, focus group discussions and feedback from cognitive testing (n = 17). We administered an initial SALANS measure with 39 items to patients diagnosed with DTC in the past two years (n = 105). Exploratory factor analysis (EFA) examined the factor structure of the SALANS items. We assessed the consistency reliability and related the total and subscale scores of the final SALANS to existing PROMs to assess validity. RESULTS: The final SALANS consisted of 33 items and six subscales (sialadenitis, taste, xerostomia, dry eyes, epiphora, and nasal) with six factors extracted by EFA. The six subscales demonstrated good internal reliability (α range = 0.87-0.92). The SALANS total score showed good convergent validity with the Xerostomia Inventory (r = 0.86) and good discriminant validity with a measure of spirituality (r = - 0.05). The mean SALANS total score was significantly higher (d = 0.5, p < 0.04) among patients who had RAI compared to those who did not have RAI. CONCLUSION: Preliminary evidence suggests that SALANS is a novel and reliable PROM to assess the type and frequency all symptoms experienced after RAI treatment for DTC. Future work is needed to further validate and develop the scale.

Analysis of Unmet Information Needs Among Patients With Thyroid Cancer.

Importance: Counseling prior to thyroid cancer (TC) treatment is an essential component of informed consent. An informed patient affects treatment-related expectations and patient engagement, factors that contribute significantly to patient-reported quality-of-life outcomes. Objective: To describe experiences with pretreatment counseling among survivors of TC and to test factors associated with self-reported treatment meeting expectations. Design, Setting, and Participants: A cross-sectional survey was administered between October 18, 2019, and February 8, 2020, to members of ThyCa: Thyroid Cancer Survivors' Association Inc, and to individuals accessing the public-facing ThyCa website. Survey respondents were asked 55 questions, including 4 free-text questions and 2 multiple-choice questions about pretreatment counseling. Main Outcomes and Measures: Respondents self-reported (1) their unmet information needs, (2) rates of treatment meeting expectations, and (3) rates of treatment understanding. A mixed-methods analysis was performed, including qualitative content analysis of free-text responses and multivariable logistic regression of factors associated with self-reported levels of treatment meeting expectations. Results: Of the 1412 survey respondents, 1249 were women (88.4%). The median age at diagnosis was 48 years (range, 18-85 years), and the median age at the time of survey completion was 60 years (range, 18-87 years). A total of 1259 respondents (89.2%) provided free-text responses to the question, "What would you tell someone newly diagnosed with your same condition?" Of these individuals, 526 (37.2%) reported inadequate pretreatment plan understanding and 578 (40.9%) reported that their treatment experience did not meet their expectations. Treatment met expectations for only 95 respondents (18.1%) reporting an inadequate pretreatment plan understanding. Of the 526 survivors of TC reporting a lack of understanding, 473 (90.0%) provided additional textual comments, most commonly in the categories of postoperative treatment, surveillance, and treatment effects. On multivariable logistic regression, self-reported failure to have an understanding of TC treatment was independently associated with failure of treatment to meet expectations (odds ratio, 5.1 [95% CI, 3.7-6.9]). Patients reporting a full understanding of their treatment plan were 5-fold more likely to indicate that their initial treatment experience was on par with expectations, independent of reported postoperative complications, age, sex, and other potential confounders. Conclusions and Relevance: In this survey study, a substantial proportion of survivors of TC reported inadequate pretreatment understanding. This gap in understanding was associated with high levels of self-reported failure of treatment to meet expectations, which in turn is associated in other studies with poorer patient-reported quality-of-life outcomes. These outcomes may be improved by addressing gaps in patient understanding so expectations more closely match TC diagnosis and treatment pathways.

Perioperative pain management and opioid-reduction in head and neck endocrine surgery: An American Head and Neck Society Endocrine Surgery Section consensus statement.

BACKGROUND: This American Head and Neck Society (AHNS) consensus statement focuses on evidence-based comprehensive pain management practices for thyroid and parathyroid surgery. Overutilization of opioids for postoperative pain management is a major contributing factor to the opioid addiction epidemic however evidence-based guidelines for pain management after routine head and neck endocrine procedures are lacking. METHODS: An expert panel was convened from the membership of the AHNS, its Endocrine Surgical Section, and ThyCa. An extensive literature review was performed, and recommendations addressing several pain management subtopics were constructed based on best available evidence. A modified Delphi survey was then utilized to evaluate group consensus of these statements. CONCLUSIONS: This expert consensus provides evidence-based recommendations for effective postoperative pain management following head and neck endocrine procedures with a focus on limiting unnecessary use of opioid analgesics.

Immediate and partial neural dysfunction after thyroid and parathyroid surgery: Need for recognition, laryngeal exam, and early treatment.

BACKGROUND: Laryngeal dysfunction after thyroid and parathyroid surgery requires early recognition and a standardized approach for patients that present with voice, swallowing, and breathing issues. The Endocrine Committee of the American Head and Neck Society (AHNS) convened a panel to define the terms "immediate vocal fold paralysis" and "partial neural dysfunction" and to provide clinical consensus statements based on review of the literature, integrated with expert opinion of the group. METHODS: A multidisciplinary expert panel constructed the manuscript and recommendations for laryngeal dysfunction after thyroid and parathyroid surgery. A meta-analysis was performed using the literature and published guidelines. Consensus was achieved using polling and a modified Delphi approach. RESULTS: Twenty-two panelists achieved consensus on five statements regarding the role of early identification and standardization of evaluation for patients with "immediate vocal fold paralysis" and "partial neural dysfunction" after thyroid and parathyroid surgery. CONCLUSION: After endorsement by the AHNS Endocrine Section and Quality of Care Committee, it received final approval from the AHNS Council.

Looking under the hood of "the Cadillac of cancers:" radioactive iodine-related craniofacial side effects among patients with thyroid cancer.

PURPOSE: Despite having a generally favorable prognosis, differentiated thyroid cancer is known to have a significant, long-term impact on the quality of life of survivors. We wished to investigate short- and long-term effects among thyroid cancer survivors following radioactive iodine therapy. METHODS: We conducted eight focus groups (N = 47) to understand patients' experiences of short- and long-term effects after radioactive iodine treatment and the impact these treatment-related side effects had on patients' quality of life. We elicited responses regarding experiences with side effects following radioactive iodine treatment, particularly salivary, lacrimal, and nasal symptoms. We transcribed audiotapes and conducted qualitative analyses to identify codes and themes. RESULTS: We identified eight broad themes from the qualitative analyses. Themes reflecting physical symptoms included dry mouth, salivary gland dysfunction, altered taste, eye symptoms such as tearing or dryness, and epistaxis. Psychosocial themes included lack of knowledge and preparation for treatment, regret of treatment, and distress that thyroid cancer is labeled as a "good cancer." CONCLUSIONS: Thyroid cancer survivors reported a wide range of radioactive iodine treatment-related effects and psychosocial concerns that appear to reduce quality of life. The psychosocial concerns reported by participants underscore the significant unmet information and support needs prior to and following RAI treatment among individuals diagnosed with thyroid cancer. IMPLICATIONS FOR CANCER SURVIVORS: Future research is needed to help both patients and physicians understand the effect of radioactive iodine on quality of life, and to better assess the benefits versus the risks of radioactive iodine therapy.

What the thyroid cancer patient wants to know: ThyCa survey by the American Head and Neck Society Endocrine Surgery Section.

OBJECTIVE: To survey a large cohort of thyroid cancer survivors from ThyCa on information needs and expectations of their treatment to better understand the pretreatment counseling, information, and support needs of this population. METHODS: Anonymous survey of thyroid cancer survivors. RESULTS: One thousand one hundred twenty-four patients with thyroid cancer participated in the survey. Three hundred sixty-two (37.44%) reported not having had a full understanding of their treatment plan and 407 (46.41%) reported that their thyroid cancer treatment did not conform to expectations. Patients diagnosed at younger ages were significantly more likely to report inadequate understanding of the treatment, failure of treatment to meet expectations, and call for greater attention to psychological well-being. Older patients were more likely to report unexpected effects on speech and swallowing. Regardless of age, patients most frequently called for greater attention to management of energy levels (endorsed by 61% of respondents), psychological well-being (50%), and weight changes (48%). CONCLUSIONS: Improvements are needed in age-specific communication of thyroid cancer diagnosis and treatment.

Nationwide Survey on Implementation of 2011 Nuclear Regulatory Commission Policy on Release of Patients After 131I Therapy for Thyroid Cancer.

The objective of this nationwide survey was to evaluate whether there has been a change in the practice regarding hospital release of differentiated thyroid cancer patients treated with 131I since the publication of Nuclear Regulatory Commission Regulatory Issue Summary 2011-01 addressing patient release. Methods: A survey was emailed to approximately 25,000 members of ThyCa: Thyroid Cancer Survivors' Association, Inc., and was available online from March to August 2018. Responses were included from adult patients regarding their most recent 131I therapy received between 2011 and 2018 ("after 2011"). Responses to this survey were compared with those of a similar previous survey for 131I therapies received between 1997 and 2009 ("before 2009"). Results: Of the 2,136 responses, 1,111 met the inclusion criteria. A similar percentage (∼98%) of patients were given oral or written radiation safety instructions (RSIs) after 2011 and before 2009, with a shift away from nuclear medicine physicians providing instructions after 2011 (43%) in comparison with before 2009 (54%; P < 0.001). More patients were able to discuss and individualize the RSIs after 2011 (67%) than before 2009 (29%; P < 0.001). However, 2% of patients do not recall ever receiving RSIs after 2011. After 2011, more patients were treated as outpatients (87%) than before 2009 (66%; P < 0.001). For outpatients, more patients were discharged within 30 min after receiving 131I therapy after 2011 (78%) than before 2009 (72%; P = 0.002). The same percentage (0.6%) of patients traveled more than 2 h with at least 2 occupants in the vehicle within approximately 1 m of the patient after 2011 and before 2009. Immediately after therapy, a similar percentage of patients stayed in a nonprivate residence after 2011 (4%) and before 2009 (5%; P = 0.28). Of the 27 outpatients released within 30 min to nonprivate residences, 2 patients received 5.55-11.1 GBq (150-299 mCi) of 131I. Conclusion: This survey suggests that since publication of the Nuclear Regulatory Commission Regulatory Issue Summary 2011-01 on patient release after radioiodine therapy, there have been improvements in some radiation safety practices on release of outpatients, as well as improvements in patient compliance on travel and lodging.

Detection at Public Facilities of 131I in Patients Treated for Differentiated Thyroid Cancer: Frequency, Sites, Management by Security Agents, and Physician Documentation Recommended for Patients.

Patients treated with 131I may be identified at security checkpoints at various public facilities. The objective of this survey was to determine the frequency of detection, the spectrum of public facilities, the various methods of management of the situation by security agents, and the spectrum of physician documentation for patients regarding their 131I therapy. Methods: Data were tabulated from a Thyroid Cancer Survivors' Association, Inc., survey emailed to approximately 15,000 associates and available online from December 2013 to December 2014. Responses were tabulated from respondents who reported that they were 18 y old or older, had received at least 1 131I treatment for differentiated thyroid cancer, and were responding regarding their last 131I treatment. Results: Of 621 respondents, 595 reported an attempt to pass through a public facility security checkpoint. Of these 595 patients, approximately 10% (57) were identified as being radioactive. The facility reported by 43 respondents was an airport for 35% (15), border crossing for 33% (14), government building for 19% (8), shopping mall for 7% (3), train station for 5% (2), and steel recycling plant for 2% (1). The security agent's management of the situation reported by 47 respondents included questioning for 81% (38), allowing them to proceed without a change in travel plans for 57% (27), requesting documentation of the therapy for 55% (26), rescanning for 55% (26), calling a member of the treating team for validation for 17% (8), "strip" searching for 4% (2), detaining such that a change in travel plans was required for 6% (3), and prohibiting continued travel for 4% (2). The period of detainment reported by these 47 respondents was less than 30 min for 57% (27), 30 to less than 60 min for 21% (10), 1 to less than 1.5 h for 15% (7), 1.5 to less than 2 h for 2% (1), 2-4 h for 0% (0), and greater than 4 h for 4% (2). Data regarding physician documentation are presented. Conclusion: The detection of radioactivity at a variety of security checkpoints at public facilities after131I therapy occurred in approximately 10% of respondents. Travel inconvenience is not infrequent and may require alteration of travel plans. Physicians should take steps to ensure that patients not only have appropriate documentation of their 131I therapy with them but also have instructions regarding how security agents may verify their 131I therapy.

Selected Radiation Safety Aspects Including Transportation and Lodging After Outpatient 131I Therapy for Differentiated Thyroid Cancer.

BACKGROUND: Whether radioactive iodine (131I) treatments for differentiated thyroid cancer should be performed as an outpatient or inpatient remains controversial. The objective of this study was to survey selected aspects of radiation safety of patients treated with 131I for differentiated thyroid cancer as an outpatient. METHODS: An e-mail invitation was sent to over 15,000 members of ThyCa: Thyroid Cancer Survivors' Association, Inc. to complete a web-based survey on selected aspects of radiation safety regarding their last outpatient 131I treatment. RESULTS: A total of 1549 patients completed the survey. Forty-five percent (699/1541) of the respondents reported no discussion on the choice of an inpatient or outpatient treatment. Moreover, 5% (79/1541) of the respondents reported that their insurance company made the decision. Survey respondents recalled receiving oral and written radiation safety instructions 97% (1459/1504) and 93% (1351/1447) of the time, respectively. Nuclear medicine physicians delivered oral and written instructions to 54% (807/1504) and 41% (602/1462) of the respondents, respectively. Eighty-eight percent (1208/1370) of the respondents were discharged within 1 hour after receiving their 131I treatment, and 97% (1334/1373) traveled in their own car after being released from the treating facility. Immediately post-therapy, 94% (1398/1488) of the respondents stayed at their own home or a relative's home, while 5% (76/1488) resided in a public lodging. The specific recommendations received by patients about radiation precautions varied widely among the respondents. Ninety-nine percent (1451/1467) of the respondents believed they were compliant with the instructions. CONCLUSION: This is the largest, patient-based survey published regarding selected radiation safety aspects of outpatient 131I treatment. This survey suggests several concerns about radiation safety, such as the decision process regarding inpatient versus outpatient treatment, instructions about radiation safety, transportation, and lodging after radioiodine therapy. These concerns warrant further discussion, guidelines, and/or policies.

Patient perspectives on dysphonia after thyroidectomy for thyroid cancer.

OBJECTIVES: To determine the frequency and consequences of patient-reported post-thyroidectomy voice disorder (PTVD) after surgery for thyroid cancer. STUDY DESIGN: Retrospective review of data gathered from a survey. PARTICIPANTS: Members of the Thyroid Cancer Survivors' Association (ThyCa). METHODS: ThyCa members were asked about their thyroid disease and surgery, voice disturbance, impact on quality of life, treatment, and non-identifying demographics in a 36-item electronic questionnaire. Patients with preoperative voice disturbance or vocal fold immobility and those reporting postoperative vocal fold paralysis were excluded. RESULTS: A total of 4426 members responded (37% response rate), and PTVD was reported by 51.1% of responders. Most were temporary (85.9%), with a minority reporting permanent hoarseness. Rates of postoperative dysphonia were similar between the extent of surgery and histology. Patients with PTVD predominantly characterized their impairment as loss of loudness and an inability to shout or sing. Nearly a quarter of patients reporting PTVD identified detrimental impact to their professional or personal lives. Only 57 patients (3.4%) were offered voice therapy; however, more than two-thirds of them (73.7%) experienced at least partial improvement. CONCLUSIONS: We report the results of a large-scale patient survey to underscore the commonness of postoperative hoarseness and its impact on patients. LEVEL OF EVIDENCE: 4.