Thyroid disease‐specific quality of life questionnaires ‐ A systematic review

Uslar, Verena; Becker, Cinda; Weyhe, Dirk; Tabriz, Navid

doi:10.1002/edm2.357

Cited by 15 publications

(10 citation statements)

References 74 publications

(164 reference statements)

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“…The higher the score indicates worse health status. It has been validated for use in different settings and languages as well, 15 assisting with patients and doctors to monitor the effects of treatment and evaluate QoL of patients with benign thyroid diseases 16,17 …”

Section: Methodsmentioning

confidence: 99%

“…It has been validated for use in different settings and languages as well, 15 assisting with patients and doctors to monitor the effects of treatment and evaluate QoL of patients with benign thyroid diseases. 16,17 Decision regret is a related indicator of treatment satisfaction, which can help patients who need more information support and evaluate the effect of decision support intervention. 18,19 Treatment satisfaction can be assessed with DRS, which can be used to provide disease-related knowledge, support and explore patient preferences to promote shared decision making.…”

Section: Instrumentsmentioning

confidence: 99%

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Quality of life and decision regret in patients with late‐hypothyroidism after radioiodine treatment for Graves' disease

Li,

Yang,

et al. 2023

Clinical Endocrinology

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ObjectivePatients with Graves' disease often engage in shared decision‐making to select an individualised treatment regimen from multiple options. Radioactive iodine (RAI) is one of the treatment choices for their condition, aims to improve quality of life and well‐being. Likewise, dissatisfaction with treatment outcomes can result in decision regret. We employed validated questionnaires to assess the prospective quality of life, decision regret and relative factors involved in decision‐making of patients with late hypothyroidism after RAI therapy.MethodsA questionnaire survey was conducted among patients in hypothyroidism status for more than 1 year after RAI therapy. Disease‐specific and generic QoL were assessed using the short form of thyroid‐related patient‐reported outcome (ThyPRO‐39) questionnaire. Patient satisfaction regarding their decision to undergo RAI was assessed using the Decision Regret Scale (DRS) and patients were asked about the importance of relative factors in decision‐making.ResultsOf 254 patients who responded to the survey, the mean age of patients was 45.3 years (range: 18–78 years) and the median time from RAI therapy to survey was 4 years (range: 1–30 years). Patients' median and mean DRS score were 34.4 and 38.8 (range: 0–100), respectively. A total of 100 (39.4%) patients express absent‐to‐mild regret (score: 0–25), 154 (60.6%) patients express moderate‐to‐severe regret (score: >25). The mean score of the absent‐to‐mild regret group were significantly higher than those of the moderate‐to‐severe regret group on most ThyPRO‐39 scales. A statistically significant positive correlation was observed between DRS score and most ThyPRO‐39 scale score. There was a significant positive association between higher DRS score and longer time intervals after RAI treatment, a brief duration of hyperthyroidism, and the significance of long‐time outpatient follow‐up. More decision regret was negatively associated Iodine‐free diet, ineffectiveness of ATD, fear of surgery.ConclusionImpairment of quality of life was positively correlated with decision regret in patients with late‐hypothyroidism after radioiodine therapy. Patients with insufficient information support before decision‐making are more likely to have higher decision regret after treatment. Our findings suggest that health providers should fully communicate with patients and provide information support in multiple dimensions during the shared‐decision‐making process.

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Section: Methodsmentioning

confidence: 99%

Section: Instrumentsmentioning

confidence: 99%

Quality of life and decision regret in patients with late‐hypothyroidism after radioiodine treatment for Graves' disease

Li,

Yang,

et al. 2023

Clinical Endocrinology

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“…Thyroid disorders are common endocrine diseases with increasing incidence in recent years, including thyroid cancer and benign thyroid diseases (22). Thyroid cancer is the most commonly detected cancer in young people aged 15-29 years and is characterized by a significantly higher incidence in women than men, with 44,280 new cases of thyroid cancer expected to be diagnosed in 2021 (23,24).…”

Section: Introductionmentioning

confidence: 99%

Association between urinary organophosphate ester metabolite exposure and thyroid disease risk among US adults: National Health and Nutrition Examination Survey 2011-2014

Lin,

Wang

et al. 2024

Front. Endocrinol.

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BackgroundOrganophosphate esters (OPEs) may interfere with thyroid function, but the relationship between OPEs and thyroid disease remains unclear. This study aims to elucidate the relationship between OPEs exposure and thyroid disease risk in the general population in the United States.MethodData were obtained from the 2011-2014 National Health and Nutrition Examination Survey cycle. All participants were tested for seven OPE metabolites in their urine and answered questions about whether they had thyroid disease through questionnaires. Logistic regression was employed to analyze the association between exposure to individual OPE metabolites and thyroid disease. Weighted Quantile Sum (WQS) regression modeling was utilized to assess exposure to mixed OPE metabolites and risk of thyroid disease. Bayesian kernel machine regression(BKMR) models to analyze the overall mixed effect of OPE metabolites.ResultA total of 2,449 participants were included in the study, 228 of whom had a history of thyroid disease. Bis(1,3-dichloro-2-propyl) phos (BDCPP), Diphenyl phosphate (DPHP) and Bis(2-chloroethyl) phosphate (BCEP) were the top three metabolites with the highest detection rates of 91.75%, 90.77% and 86.57%, respectively. In multivariate logistic regression models, after adjustment for confounding variables, individuals with the highest tertile level of BCEP were significantly and positively associated with increased risk of thyroid disease (OR=1.57, 95% CI=1.04-2.36), using the lowest tertile level as reference. In the positive WQS regression model, after correcting for confounding variables, mixed exposure to OPE metabolites was significantly positively associated with increased risk of thyroid disease (OR=1.03, 95% CI=1.01-1.06), with BCEP and DPHP having high weights. In the BKMR model, the overall effect of mixed exposure to OPE metabolites was not statistically significant, but univariate exposure response trends showed that the risk of thyroid disease decreased and then increased as BCEP exposure levels increased.ConclusionThe study revealed a significant association between exposure to OPE metabolites and an increased risk of thyroid disease, with BCEP emerging as the primary contributor. The risk of thyroid disease exhibits a J-shaped pattern, whereby the risk initially decreases and subsequently increases with rising levels of BCEP exposure. Additional studies are required to validate the association between OPEs and thyroid diseases.

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“…Studies in thyroid cancer survivorship have utilized a wide variety of generic and thyroid-cancer specific survey tools (patient-reported outcome measures [PROMs]) at various time points. 9 , 11–16 There is no consensus as to which PROM is superior 12 , 17 and the nuances of the thyroid cancer experience cannot be completely captured by predefined questions alone. Some PROMs focus on physical and psychological outcomes and lack questions regarding social functioning 12 , 13 , 17 or financial hardship.…”

Section: Introductionmentioning

confidence: 99%

“… 9 , 11–16 There is no consensus as to which PROM is superior 12 , 17 and the nuances of the thyroid cancer experience cannot be completely captured by predefined questions alone. Some PROMs focus on physical and psychological outcomes and lack questions regarding social functioning 12 , 13 , 17 or financial hardship. 18–21 Qualitative research ranks issues such as fear of cancer recurrence (FCR), social supports, and employment as highly important, 22–24 and lack of knowledge, clinician distrust, and poor communication as factors that may impair HRQoL.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2023

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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.

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Thyroid disease‐specific quality of life questionnaires ‐ A systematic review

Cited by 15 publications

References 74 publications

Quality of life and decision regret in patients with late‐hypothyroidism after radioiodine treatment for Graves' disease

Quality of life and decision regret in patients with late‐hypothyroidism after radioiodine treatment for Graves' disease

Association between urinary organophosphate ester metabolite exposure and thyroid disease risk among US adults: National Health and Nutrition Examination Survey 2011-2014

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

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