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.

Decision Regret Following the Choice of Surgery or Active Surveillance for Small, Low-Risk Papillary Thyroid Cancer: A Prospective Cohort Study.

Background: It is important to understand cancer survivors' perceptions about their treatment decisions and quality of life. Methods: We performed a prospective observational cohort study of Canadian patients with small (<2 cm) low-risk papillary thyroid cancer (PTC) who were offered the choice of active surveillance (AS) or surgery (Clinicaltrials.gov NCT03271892). Participants completed a questionnaire one year after their treatment decision. The primary intention-to-treat analysis compared the mean decision regret scale total score between patients who chose AS or surgery. A secondary analysis examined one-year decision regret score according to treatment status. Secondary outcomes included quality of life, mood, fear of disease progression, and body image perception. We adjusted for age, sex, and follow-up duration in linear regression analyses. Results: The overall questionnaire response rate was 95.5% (191/200). The initial treatment choices of respondents were AS 79.1% (151/191) and surgery 20.9% (40/191). The mean age was 53 years (standard deviation [SD] 15 years) and 77% (147/191) were females. In the AS group, 7.3% (11/151) of patients crossed over to definitive treatment (two for disease progression) before the time of questionnaire completion. The mean level of decision regret did not differ significantly between patients who chose AS (mean 22.4, SD 13.9) or surgery (mean 20.9, SD 12.2) in crude (p = 0.730) or adjusted (p = 0.29) analyses. However, the adjusted level of decision regret was significantly higher in patients who initially chose AS and crossed over to surgery (beta coefficient 10.1 [confidence interval; CI 1.3-18.9], p = 0.02), compared with those remaining under AS. In secondary adjusted analyses, respondents who chose surgery reported that symptoms related to their cancer or its treatment interfered with life to a greater extent than those who chose AS (p = 0.02), but there were no significant group differences in the levels of depression, anxiety, fear of disease progression, or overall body image perception. Conclusions: In this study of patients with small, low-risk PTC, the mean level of decision regret pertaining to the initial disease management choice was relatively low after one year and it did not differ significantly for respondents who chose AS or surgery.

Five-Year Follow-Up of Health-Related Quality of Life in Differentiated Thyroid Cancer Patients Treated with Total Thyroidectomy and Radioiodine in Sweden: A Nationwide Prospective Cohort Study.

Background: Despite a good prognosis, survivors of differentiated thyroid cancer (DTC) may have reduced health-related quality of life (HRQOL) many years after treatment, and it is unclear how suppression of thyroid-stimulating hormone (TSH) may contribute to HRQOL. This study investigated changes in HRQOL in the 5 years following DTC treatment, the association between HRQOL and TSH suppression, and how HRQOL compares to the general population. Methods: In this nationwide prospective cohort study, 487 patients with DTC were identified between 2012 and 2017 from all Swedish hospitals treating patients with DTC. Patients treated with total thyroidectomy and planned for radioiodine answered the Swedish version of the Short Form-36 Health Survey (SF-36) and a study specific questionnaire at treatment and after 1, 3, and 5 years. Summary measures for physical and mental QOL were derived from the SF-36, and TSH values were collected from patient records. To study changes in HRQOL over time, linear mixed models were fitted on multiply imputed data, with all patients and measurement points included in the model. Results: In total, 351 patients consented to participate in the study. In the 5 years following DTC treatment, physical QOL did not change significantly with time, while mental QOL improved by on average 0.61 (p < 0.001) per year. TSH levels were not predictive of either physical or mental QOL, or their change over time. At 5 years, there was a significant difference in physical and mental QOL compared with the Swedish general population, but effect sizes were small (Cohen's d = 0.29 and -0.21, respectively). The SF-36 domains general health, vitality, social functioning, and mental health were lower at 5 years compared with the general population (difference 8.7-13.3), and these differences were clinically significant. Conclusions: The mental component of HRQOL improves over time following DTC treatment. HRQOL in patients with DTC is not explained by TSH suppression. Although overall differences in physical and mental HRQOL compared with the general population were small 5 years after treatment, several specific psychosocial HRQOL domains were clinically meaningfully reduced. Psychosocial health issues should be screened for during DTC follow-up.

Distress, illness perception and coping style among thyroid cancer patients after thyroidectomy: A cross-sectional study.

PURPOSE: Thyroid cancer generally has a good prognosis, and thyroidectomy is the main treatment given to thyroid cancer patients. Almost every cancer patient experiences varying degrees of distress, which can reduce their quality of life. This study aims to explore the level of distress and its relationship with illness perception and coping style among Chinese thyroid cancer patients after thyroidectomy and to identify the influencing factors on distress. METHODS: A cross-sectional study with convenience sampling method was conducted. Totally 184 thyroid cancer patients after thyroidectomy were recruited in a tertiary hospital in Southern China with the response rate being 94.4% . The participants were investigated by a self-designed demographic and disease-related questionnaire, the Distress Management, the Brief Illness Perception Questionnaire, and the Medical Coping Modes Questionnaire. Descriptive statistics, univariate analysis, and multivariate linear regression were applied for data analysis. RESULTS: In total, 99 (53.8%) thyroid cancer patients after thyroidectomy scored 4 or higher on the DT. Illness perception, emotional problem, body image loss by surgical scars, and acceptance-resignation were the influencing factors of distress and could explain 67.6% of the variance of distress among thyroid cancer patients after thyroidectomy. CONCLUSIONS: Healthcare professionals should not ignore the distress among thyroid cancer patients after thyroidectomy and should take effective measures to alleviate the distress of thyroid cancer patients after thyroidectomy by enhancing their accurate and positive illness perceptions, decreasing their emotional problems, alleviating their body image loss by surgical scars, and avoiding acceptance-resignation coping style.

Fear of Cancer Recurrence in Differentiated Thyroid Cancer Survivors: A Systematic Review.

Background: Despite excellent survival rates, health-related quality of life detriments are common in differentiated thyroid cancer survivors and can be driven by fear of cancer recurrence (FCR). This review aims to report the incidence of FCR in thyroid cancer survivors and synthesize evidence regarding contributing factors. An overview and appraisal of the range of tools used to measure FCR is presented. Methods: A systematic review of the English literature was performed. The search across six electronic databases generated 3414 studies. Two reviewers independently screened the citations and full-text articles, of which 31 were included. The data were extracted independently by two reviewers. Results: The incidence of FCR was reported in 27/31 studies and ranged from 15% to 91%. Direct comparisons regarding incidence and severity of FCR were not possible due to heterogeneity in cut-points used to define FCR. A total of eight validated tools were used to measure FCR across all studies, with five studies using self-developed nonvalidated items. There was minimal repetition of validated tools and no clear consensus as to a preferred survey tool. Factors influencing FCR were reported in 11 studies. There was minimal overlap of factors influencing FCR. Risk factors contributing to increased FCR reported in more than one study included young age and an upcoming clinical appointment. Male gender and higher education levels were reported in more than one article as protective. No literature evaluating interventions to address FCR in thyroid cancer survivors was found. Conclusion: FCR is common in thyroid cancer survivors, but significant heterogeneity in the current evidence base limits assessment of incidence, severity, or risk factors. There is a need to use validated tools to assess FCR in both research and clinical contexts. Reliable assessment of FCR may permit routine assessment of FCR in clinical practice and allow interventions to be prospectively evaluated to optimize the holistic well-being of thyroid cancer survivors.

A Long-Term Study Comparing the Quality of Life and Psychological Status of Patients with Highly Suspicious Thyroid Nodules ≤1 cm Undergoing Active Surveillance with Those Undergoing Immediate Surgery.

Background: Limited information is available on the long-term impact of active surveillance (AS) and immediate surgery (IS) on the quality of life (QoL) and psychological status of patients with highly suspicious subcentimeter thyroid nodules. Methods: A prospective study was conducted on 752 patients showing highly suspicious subcentimeter thyroid nodules, among whom 584 chose AS and 168 chose IS. All patients underwent at least two assessments regarding their QoL and psychological status, using three questionnaires: Thyroid Cancer-Specific Quality of Life (THYCA-QoL), Hospital Anxiety and Depression Scale (HADS), and European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Core Questionnaire (QLQ-C30). Propensity-score matching (PSM) at a ratio of 3:1 was utilized on patients in the AS and IS groups to mitigate selection bias (504 patients in the AS group and 168 in the IS group). Subsequently, the mixed linear model was used to analyze the QoL data. Results: The median time from the initial evaluation to the last follow-up in the AS and IS groups was 24.0 and 14.2 months, respectively. The AS group showed superior QoL outcomes compared to the IS group, mainly manifested in voice (p < 0.001), sympathetic (p = 0.008), throat/mouth (p < 0.001), and problems with scar (p < 0.001) domains, as per the THYCA-QoL questionnaire. Further, the EORTC QLQ-C30 questionnaire highlighted better outcomes in physical function (p = 0.029), role function (p < 0.001), social function (p < 0.001), global health status (p < 0.001), fatigue (p = 0.012), pain (p = 0.028), appetite loss (p = 0.017), and financial difficulties (p < 0.001). Compared to the initial assessment (1 week after surgery), the IS group showed progressive improvements in QoL, especially in voice (p = 0.024), throat/mouth (p < 0.001), physical function (p = 0.004), social function (p = 0.014), nausea and vomiting (p < 0.001), pain (p = 0.006), and appetite loss (p = 0.048) domains as per both questionnaires. Conclusion: Patients with highly suspicious subcentimeter thyroid nodules who choose IS tend to experience a poorer long-term QoL compared to those who choose AS. Although the situation may improve over time, certain issues might persist, making AS a favorable option for these patients.

The impact of electronic versus paper-based data capture on data collection logistics and on missing scores in thyroid cancer patients.

PURPOSE: The purpose of this study was to investigate the impact of the type of data capture on the time and help needed for collecting patient-reported outcomes as well as on the proportion of missing scores. METHODS: In a multinational prospective study, thyroid cancer patients from 17 countries completed a validated questionnaire measuring quality of life. Electronic data capture was compared to the paper-based approach using multivariate logistic regression. RESULTS: A total of 437 patients were included, of whom 13% used electronic data capture. The relation between data capture and time needed was modified by the emotional functioning of the patients. Those with clinical impairments in that respect needed more time to complete the questionnaire when they used electronic data capture compared to paper and pencil (ORadj 24.0; p = 0.006). This was not the case when patients had sub-threshold emotional problems (ORadj 1.9; p = 0.48). The odds of having the researcher reading the questions out (instead of the patient doing this themselves) (ORadj 0.1; p = 0.01) and of needing any help (ORadj 0.1; p = 0.01) were lower when electronic data capture was used. The proportion of missing scores was equivalent in both groups (ORadj 0.4, p = 0.42). CONCLUSIONS: The advantages of electronic data capture, such as real-time assessment and fewer data entry errors, may come at the price of more time required for data collection when the patients have mental health problems. As this is not uncommon in thyroid cancer, researchers need to choose the type of data capture wisely for their particular research question.

Longitudinal Changes in Quality of Life Before and After Thyroidectomy in Patients With Differentiated Thyroid Cancer.

OBJECTIVE: The objective of this prospective study was to assess longitudinal variations in health-related quality of life (HR-QOL) in patients diagnosed with differentiated thyroid cancer (DTC) before and after thyroidectomy. METHODS: A cohort of 185 DTC patients who underwent thyroidectomy between January 2013 and December 2017 and who completed all necessary questionnaires was evaluated. Their HR-QOL was gauged using the University of Washington Quality of Life questionnaire (UW-QOL) and the City of Hope Quality of Life-Thyroid Version questionnaire (QOL-TV) both prior to surgery and at 3 months, 6 months, 1 year, 2 years, 3 years, and 5 years postoperatively. RESULTS: Out of 185 patients, 150 (81.1%) were female, with an average age of 48.7 ± 12.9 years. For both UW-QOL and QOL-TV, the total composite QOL scores notably declined from preoperative levels to 3 months postoperatively, then gradually improved over 5 years, ultimately exceeding preoperative scores. Factors such as total thyroidectomy, radioactive iodine (RAI) ablation, and postoperative hypoparathyroidism were associated with lower physical composite QOL scores. Patients who underwent remote-access thyroidectomy expressed significantly higher satisfaction with appearance compared with those who had conventional thyroidectomy. Mood and anxiety were major clinical concerns both before and after surgery, showing considerable improvement postoperatively. CONCLUSION: For DTC patients, HR-QOL experienced a significant drop 3 months postsurgery, subsequently showing gradual improvement, surpassing preoperative QOL by 5 years. Factors contributing to improved physical QOL included the utilization of remote-access thyroidectomy, less extensive thyroidectomy, and the absence of RAI ablation and hypoparathyroidism.

Hearing the Voices of Australian Thyroid Cancer Survivors: Qualitative Thematic Analysis of Semistructured Interviews Identifies Unmet Support Needs.

Background: Most thyroid cancer survivors regain their physical health-related quality of life, but psychological and social deficits persist. The nature of these detriments remains poorly understood and they are insufficiently captured by survey data alone. To address this, qualitative data exploring the breadth and depth of thyroid cancer survivors' experiences and priorities for supportive care are required. Methods: Twenty semistructured interviews were undertaken with a purposive, maximum variation sample of thyroid cancer survivors. Interviews were transcribed verbatim and coded independently by two researchers. A hybrid model of inductive and realistic codebook analysis was undertaken with themes developed. Results: Patient experiences centered around three themes: (1) impact of diagnosis and treatment, (2) thyroid cancer does not happen in isolation, and (3) role of clinicians and formalized support structures. The word "cancer" had negative connotations, but for many, the reality of their experience was more positive. Despite feeling "lucky" at the relative low-risk nature of thyroid cancer, many patients reported fatigue, weight gain, and difficulty returning to usual activities; concerns that were largely dismissed or minimized by clinicians. Few were offered any support beyond their treating doctors; where patients attempted to access formalized supportive care, little was available or appropriate. Life stage and concurrent family and social stressors greatly impacted patients' ability to cope with diagnosis and treatment. Addressing thyroid cancer in isolation felt inappropriate without appreciating the broader context of their lives. Interactions with clinicians were largely positive, particularly where information was communicated as a means of empowering patients to participate in shared decision-making and where clinicians "checked in" emotionally with patients. Information about initial treatments was largely adequate but information on longer term effects and follow-up was lacking. Many patients felt that clinicians focused on physical well-being and scan results, missing opportunities to provide psychological support. Conclusions: Thyroid cancer survivors can struggle to navigate their cancer journey, particularly with regard to psychological and social functioning. There is a need to acknowledge these impacts at the time of clinical encounters, as well as develop information resources and support structures that can be individualized to optimize holistic well-being for those in need.

Health-Related Quality of Life and Thyroid Cancer-Specific Symptoms in Patients Treated for Differentiated Thyroid Cancer: A Single-Center Cross-Sectional Survey from Mainland China.

Background: The incidence of differentiated thyroid cancer in Mainland China has increased rapidly in recent years, yet the number of studies focusing on health-related quality of life (HR-QOL) is still limited. Additionally, some of the quality-of-life (QOL) issues specific to thyroid cancer have not been adequately described. The aims of this study were to assess the generic and disease-specific HR-QOL of differentiated thyroid cancer survivors and to identify the associated factors. Methods: A cross-sectional survey including 373 patients was conducted in Mainland China. Participants completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30), the Thyroid Cancer-Specific Quality of Life Questionnaire (THYCA-QOL), and a questionnaire on patient demographics and clinical characteristics. Results: The QLQ-C30 global mean score was 73.12 (standard deviation [SD] = 11.95), while the THYCA-QOL summary mean score was 34.50 (SD = 12.68). The two QLQ-C30 functional subscales with the lowest scores were the social functioning and role functioning subscales. The five symptom subscales of the THYCA-QOL with the highest scores were the subscales regarding less interest in sex, problems with scar, psychological problems, voice problems, and sympathetic problems. Factors associated with worse global QOL on the QLQ-C30 included a shorter time since completing primary treatment (≤6 months), a history of lateral neck dissection, and a lower current thyrotropin (TSH) level (≤0.5 mIU/L). Higher cumulative activities of radioiodine (RAI; >100 mCi), gender (women), postoperative hypoparathyroidism, and a history of lateral neck dissection were associated with worse thyroid cancer-specific QOL. In contrast, higher monthly household income (>5000ï¿¥) and a history of minimally invasive thyroid surgery were associated with better thyroid cancer-specific QOL. Conclusions: Thyroid cancer patients experience multiple health-related problems and disease-specific symptoms after completing primary treatment. Patients with a duration ≤6 months from the completion of primary treatment, those with a history of lateral neck dissection, and a current TSH level ≤0.5 mIU/L may be more likely to have impaired generic QOL. More thyroid cancer-specific symptoms may be associated with higher cumulative activities of RAI, gender (women), postoperative hypoparathyroidism, a history of lateral neck dissection, lower monthly household income, and conventional surgery.

Predictors of Anxiety and Depression in Differentiated Thyroid Cancer Survivors: Results of a Cross-Sectional Study.

Background: Despite an excellent survival rate, impairments are recognized in the quality of life and emotional well-being of differentiated thyroid cancer (DTC) survivors. Predictors for anxiety and depression in DTC patients are not well characterized. Objective: To identify predictors for anxiety and depression in DTC survivors. Methods: In this cross-sectional study, all DTC survivors presenting for follow-up between 2014 and 2019 in a tertiary referral hospital were asked to complete the "Hospital Anxiety and Depression Scale" (HADS). Depression (HADS-D) and anxiety (HADS-A) subscores were dichotomized for analysis. Univariate and multivariable logistic regression analyses were performed to identify predictors of anxiety and depression. Inverse probability weighting was applied to correct for bias due to nonresponse. Results: Six hundred forty patients meeting study inclusion criteria completed the HADS questionnaire (73% female, mean age 50 years). Of these, 37.6% and 15.7% of patients demonstrated HADS-A and HADS-D scores ≥8. Female sex, elevated body mass index (BMI), permanent recurrent laryngeal nerve damage (RLND), permanent hypoparathyroidism (PH), comorbidities classified in chapter XIX of the International Classification of Diseases, 10th Revision (ICD-10; external causes of morbidity and mortality), and comorbidities in chapter XXI of ICD-10 (factors influencing health status and contact with health services) were independent predictors for elevated anxiety scores with adjusted odds ratios of 1.9 ([CI 1.2-3.2], p < 0.01), 1.0 ([CI 1.0-1.1], p = 0.02), 2.6 ([CI 1.0-6.3], p = 0.04), 2.0 ([CI 1.1-3.5], p = 0.02), 5.5 ([CI 1.0-29.6], p < 0.05), and 1.7 ([CI 1.1-2.6], p = 0.03). PH, elevated anti-Tg titer, comorbidities of the digestive system (chapter XI of ICD-10), and comorbidities of the genitourinary system (chapter XIV of ICD-10) were independent predictors for depression with adjusted odds ratios of 2.2 ([CI 1.2-4.2], p = 0.01), 1.0 ([CI 1.0-1.0], p = 0.04), 3.0 ([CI 1.5-6.1], p < 0.01), and 2.4 ([CI 1.0-5.7], p = 0.04). Conclusions: Female sex, elevated BMI, RLND, PH, and comorbidities classified in chapter XIX and chapter XXI of ICD-10 are predictors for anxiety in DTC patients. PH, elevated anti-Tg titer, comorbidities of the digestive system, and comorbidities of the genitourinary system are predictors for depression in DTC patients. Physicians involved in the follow-up of DTC patients should devote particular attention to the emotional well-being in DTC patients with PH or permanent RLND.

Young people's perspectives of thyroid cancer screening and its harms after the nuclear accident in Fukushima Prefecture: a questionnaire survey indicating opt-out screening strategy of the thyroid examination as an ethical issue.

BACKGROUND: Overdiagnosis of thyroid cancer has become a major global medical issue. Ultrasound-based thyroid cancer screening has promoted overdiagnosis, and recently international recommendations state that it should not be conducted, even after a nuclear accident. The Fukushima thyroid cancer screening program was initiated in 2011 as a health policy after the nuclear accident. The risk of radiation-induced thyroid cancer was unlikely given the low radiation levels, but the thyroid cancer screening program has continued at 2-year intervals with a relatively high participation rate and is now in its fifth round. It is therefore crucial to clarify whether those targeted for screening understand the disadvantages of screening, and to identify factors that influenced their decision to participate. METHODS: We conducted an anonymous mail-based questionnaire among young people from Fukushima Prefecture (subjects) and a neighboring prefecture that was not targeted for screening (non-subjects). We asked them about the significance of the thyroid cancer screening in Fukushima Prefecture, their reasons for accepting or refusing screening, their perception of the harms of screening, and their opinions on thyroid examination at school. We compared the results of the questionnaire between subjects and non-subjects and between examinees (who were screened) and non-examinees (who declined screening). RESULTS: Only 16.5% of respondents were aware of the harms associated with thyroid cancer screening, with most perceiving that the benefits outweighed the harms. Comparison of subjects' and non-subjects' responses showed there were no significant differences between the two groups. Among subjects, there were also no differences in responses between examinees and non-examinees. The most common reason for participation in screening was that the screening was conducted in schools and perceived as obligatory. CONCLUSIONS: These results highlighted a serious ethical issue in that school-based screening leads to making young people think that it is mandatory screening in an opt-out and default setting manner, with a lack of knowledge about the disadvantages of screening. Based on the autonomy of the subjects and the ethical principle of the post-disaster, surveys after a nuclear disaster should be conducted in an opt-in style without an opt-out style such as school-based screening.

Change in worry over time among Hispanic women with thyroid cancer.

PURPOSE: The purpose of this study is to assess change in worry over time in Hispanic women with thyroid cancer. METHODS: Worry about recurrence, quality of life, family at risk, death, and harm from treatments was assessed in 273 Hispanic women with thyroid cancer diagnosed in 2014-2015. Subjects were recruited from Surveillance, Epidemiology, and End Results (SEER) Los Angeles. Participants were surveyed at two points in time (time 1: 2017-2018 and time 2: 2019). Multivariable logistic regression was used to determine correlates with high worry (somewhat, quite a bit, very much) versus low worry (not at all, a little) at time 2. RESULTS: For the five worry items, 20.1-39.6% had high worry at both time 1 and time 2. An additional 7.6-13.4% had low worry at time 1 that became high worry at time 2. In multivariable logistic regression controlling for age, recurrence status, education level, and number of complications or side effects symptoms, younger age (20-39) as compared to older (40-79) was associated with high worry about thyroid cancer recurrence (OR 2.16, 95% CI 1.12-4.17). History of recurrent or persistent disease was associated with high worry about harms from treatment (OR 2.94, 95% CI 1.29-6.67). Greater number of complications or side effects of symptoms was associated with more worry across all five items. CONCLUSIONS: Some Hispanic women with thyroid cancer have persistently high worry, with young adult Hispanic women vulnerable to worry about recurrence. IMPLICATIONS FOR CANCER SURVIVORS: Hispanic women with thyroid cancer may benefit from targeted psychosocial support during survivorship, with interventions informed by patient and cancer characteristics.

Self-perceived cognitive functioning and quality of life among cancer survivors: results from the PROFILES registry.

PURPOSE: The aim was to investigate the level of self-perceived cognitive functioning and its associated factors among a large population-based cohort of cancer survivors and their matched controls. METHODS: Data were obtained from population-based PROFILES registry cohorts, including colon, rectum, prostate or thyroid cancer, Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), chronic lymphocytic leukemia, multiple myeloma (MM), melanoma, or basal cell carcinoma (BCC)/squamous cell carcinoma (SCC). All patients completed the EORTC QLQ-C30 from which self-perceived cognitive functioning, fatigue, functioning, and global health status/quality of life (GHS/QoL) were used. The PROFILES registry data were linked with the Netherlands Cancer Registry to obtain sociodemographic and clinical data. RESULTS: Six thousand seven hundred eighty-six survivors were included (response rate=76%). Survivors, except for melanoma and BCC/SCC, reported on average lower self-perceived cognitive functioning scores compared to their matched controls (all p's<0.01). Largest differences with the norm were observed in thyroid cancer, HL, NHL and MM, and younger survivors (<50 years). Survivors with lower emotional functioning and more fatigue were more likely to report impaired self-perceived cognitive functioning. CONCLUSION: Self-perceived impaired cognitive functioning is prevalent among a wide range of cancer survivors, especially among survivors <50 years. Approaches targeting cognitive problems including attention for co-occurring symptoms such as fatigue and emotional impairments are needed to improve care for these patients. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors and clinicians should be aware that impaired self-perceived cognitive functioning is a frequently reported consequence of cancer and its treatment among survivors of various cancer types. Clinicians can redirect survivors to a relevant healthcare provider or program to target cognitive problems.

The Influence of Emotions on Treatment Decisions About Low-Risk Thyroid Cancer: A Qualitative Study.

Background: Little is known about the role of emotions in treatment decisions for thyroid cancer. We aimed to characterize the emotional content of patient-surgeon communication during decision-making about low-risk thyroid cancer treatment. Methods: We audio-recorded conversations about treatment for clinically low-risk thyroid cancer or biopsy suspicious for thyroid cancer between patients (n = 30) and surgeons (n = 9) in two diverse, academic hospitals in the United States. Inductive and deductive content analyses were used to characterize the emotional content in verbatim transcripts. Results: Patients' expression of emotion focused on primarily on their diagnosis and treatment outcomes. Patients commonly expressed negative emotions like fear and anxiety about "the C-word" and worried about the cancer growing or spreading. In response, most surgeons used education, as opposed to empathy or validation, to reassure patients, often highlighting low probabilities of adverse events. Surgeons emphasized the "slow-growing" nature and excellent prognosis of thyroid cancer compared with other malignancies. When discussing treatment options, surgeons often described alternatives in terms of their emotional outcomes. Some described total thyroidectomy as providing "peace of mind" or a "sense of completeness," warning that cancer or thyroid tissue remaining in the body with active surveillance or lobectomy might "worry" or "bother" patients. Surgeons supported deliberation by reassuring patients that there are "two right answers" and "no rush" to decide. Conclusions: Patients express negative emotions during treatment decision-making. In response, surgeons often miss opportunities to provide empathy in addition to education. Surgeons and patients both acknowledge patient fear and anxiety as a reason to choose thyroidectomy instead of active surveillance. Peace of mind gained by patients and surgeons as a result of thyroidectomy may lead to overtreatment of patients with low-risk thyroid cancer.

Effects of Chronic Suppression or Oversuppression of Thyroid-Stimulating Hormone on Psychological Symptoms and Sleep Quality in Patients with Differentiated Thyroid Cancer.

In differentiated thyroid cancer (DTC), the standard treatment includes total thyroidectomy and lifetime levothyroxine (LT4) replacement. However, long-term exogenous LT4 has become controversial due to the adverse effects of oversuppression. The study included 191 patients (aged 18-76 years) with a prospective diagnosis of non-metastatic DTC and 79 healthy individuals. The patients with DTC were stratified into three groups according to their TSH levels: suppressed thyrotropin if TSH was below 0.1 µIU/ml, mildly suppressed thyrotropin if TSH was between 0.11 and 0.49 µIU/ml, and low-normal thyrotropin if THS was between 0.5 and 2 µIU/ml. The Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), Anxiety Sensitivity Index (ASI), Short Symptom Inventory (SSI), and Pittsburgh Sleep Quality Index (PSQI) were administered to all participants. It was found that the BDI, BAI, SSI and PSQI scores were worse in patients with DTC (p=0.024, p=0.014, p=0.012, and p=0.001, respectively). According to theTSH levels, the mean ASI was found to be higher in the suppressed and mildly suppressed thyrotropin groups (19±14.4 vs. 10.6±11.1; 16.4±14.9 vs. 10.6±11.1, p=0.024, respectively), the mean SSI was found higher in the suppressed group (61.0±55.5 vs. 35.1±37.0, p=0.046), and the mean PSQI was higher in all three groups (7.94±3.97 vs. 5.35±4.13; 7.21±4.59 vs. 5.35±4.13; 7.13±4.62 vs. 5.35±4.13, p=0.006) when compared with the controls. No significant difference was found between the groups. A positive correlation was detected in the duration of LT4 use and BDI and SSI, and a weak, negative correlation was detected between TSH levels and ASI and PSQI. Based on our study, it was found that depression, anxiety disorders, and sleep problems were more prevalent in patients with DTC, being more prominent in the suppressed TSH group. These results were inversely correlated with TSH values and positively correlated with the duration of LT4 use. Unnecessary LT4 oversuppression should be avoided in patients with DTC.

Health-Related Quality of Life in Asian Differentiated Thyroid Cancer Survivors.

BACKGROUND: Health-related quality of life (HRQoL) is important for differentiated thyroid cancer survivors, but data for Asian survivors is lacking. This study aimed to have an overview of, and identify any disease-or treatment-related factors associated with, HRQoL in Asian differentiated thyroid cancer survivors. PATIENTS AND METHODS: Thyroid cancer survivors were recruited from the thyroid clinics at Queen Mary Hospital, Hong Kong from February 2016 to December 2016. All adult differentiated thyroid cancer patients with stable disease more than or equal to 1 year received a survey on HRQoL using the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) and Thyroid cancer specific quality of life (THYCA-QoL) questionnaire. Clinical information was collected retrospectively from the computerized clinical management system. To identify factors associated with poor HRQoL, univariable and stepwise multivariable regression analysis were performed. RESULTS: A total of 613 survivors completed the questionnaires (response rate: 82.1%; female: 80.1%; median survivorship: 7.4 years (range: 1.0-48.2 years)). The QLQ-C30 summary score mean was 84.4 (standard deviation (SD): 12.7) while the THYCA-QoL summary score mean was 39.9 (SD: 9.7). The 2 highest symptom subscales were fatigue (mean: 26.4, SD: 20.6) and insomnia (mean: 26.2, SD: 27.6). Factors associated with worse HRQoL included serum thyrotropin (TSH) greater than 1.0 mIU/L, unemployment, and concomitant psychiatric disorders. Concomitant psychiatric illness (n = 40/613, 6.5%) also showed significant association with most of the symptom and functional subscales. CONCLUSIONS: Fatigue and insomnia were the 2 most common symptoms experienced by our differentiated thyroid cancer survivors. Long-term survivorship care with monitoring serum TSH level, supporting return-to-work and screening for concomitant psychiatric disorders should be offered.

Patient-Reported Financial Burden in Thyroid Cancer.

BACKGROUND: The incidence of thyroid cancer is increasing at a rapid rate. Prior studies have demonstrated financial burden and decreased quality of life in patients with thyroid cancer. Here, we characterize patient-reported financial burden in patients with thyroid cancer over a 28y period. MATERIALS AND METHODS: Patients who underwent thyroidectomy for thyroid cancer from 1990-2018 completed a phone survey assessing financial burden and its related psychological financial hardship. Descriptive statistics were performed to characterize these outcomes and correlation with sociodemographic data was assessed. RESULTS: Respondents (N = 147) were 73% female, 75% white, and had a median follow up of 7 y. The majority had a full-time job (59%) and private insurance (81%) at the time of diagnosis. Overall, 16% of respondents reported financial burden and 50% reported psychological financial hardship. Those reporting financial burden were disproportionately impacted by psychological financial hardship (87% versus 43%, P < 0.001). One in four (25%) respondents reported not being adequately informed about costs. CONCLUSIONS: Financial burdens are important outcomes of thyroid cancer which occur even among patients with protective financial factors, suggesting an even greater impact on the general population of patients with thyroid cancer. Further research is needed to explore the intersection of financial burden, cost, and quality of life.