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

Dhillon, Vaninder K.; Karcioglu, Amanda Silver; Bloom, Gary; Randolph, Gregory W.; Lango, Miriam

doi:10.1002/hed.26185

Cited by 5 publications

(4 citation statements)

References 39 publications

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“…The data reported here are part of a larger study, the earlier results of which were reported separately. 31 Here we describe the result of a qualitative content analysis of 1412 respondents, a larger sample size than the initial work, as the survey remained open for 4 additional weeks. Individuals who responded to 3 or fewer fields and/or had no textual responses were excluded (n = 159).…”

Section: Participantsmentioning

confidence: 99%

Analysis of Unmet Information Needs Among Patients With Thyroid Cancer

Karcioglu

Dhillon

Davies

et al. 2023

JAMA Otolaryngol Head Neck Surg

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ImportanceCounseling 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.ObjectiveTo describe experiences with pretreatment counseling among survivors of TC and to test factors associated with self-reported treatment meeting expectations.Design, Setting, and ParticipantsA 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 MeasuresRespondents 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.ResultsOf 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 RelevanceIn 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.

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Section: Participantsmentioning

confidence: 99%

Analysis of Unmet Information Needs Among Patients With Thyroid Cancer

Karcioglu

Dhillon

Davies

et al. 2023

JAMA Otolaryngol Head Neck Surg

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“…A recent survey of 1124 thyroid cancer survivors conducted by the American Head and Neck Society Endocrine Section found that for 46% of patients, the experience of therapy was not "on par" with their expectations. Seventy percent of them had received printed preoperative instructions, but when asked how they would have liked to have had those instructions delivered, 62.5% responded that they would have preferred a printed pamphlet and 13.7% responded that they would have preferred an online website for the information [102]. Patients particularly requested more attention to the management of energy levels (61%), psychological well-being (50%), and weight changes (48%).…”

Section: Preoperative Patient Counselingmentioning

confidence: 99%

Thyroid Lobectomy for Low to Intermediate Risk Differentiated Thyroid Cancer

Hartl

Guerlain

Breuskin

et al. 2020

Cancers

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Many recent publications and guidelines have promoted a “more is less” approach in terms of treatment for low to intermediate risk differentiated thyroid cancer (DTC), which comprise the vast majority of thyroid cancers: less extensive surgery, less radioactive iodine, less or no thyroid hormone suppression, and less frequent or stringent follow-up. Following this approach, thyroid lobectomy has been proposed as a means of decreasing short- and long-term postoperative morbidity while maintaining an excellent prognosis for tumors meeting specific macroscopic and microscopic criteria. This article will examine the pros and cons of thyroid lobectomy for low to intermediate risk cancers and discuss, in detail, criteria for patient selection and oncological outcomes.

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“…Surgery is the main method of treating TC ( 3 ). Postoperative patients will have different needs in many aspects such as physical, psychological, spiritual and social ( 4 – 6 ). Unmet needs can increase negative emotions such as anxiety and depression, reduce diagnosis and treatment compliance and disease coping ability, thereby seriously affecting physical and mental health and quality of life ( 7 – 9 ).…”

Section: Introductionmentioning

confidence: 99%

The supportive care needs and its influencing factors among thyroid cancer patients after surgery: A cross-sectional study

Cai

Gou

2023

Front. Surg.

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ObjectiveTo study the supportive care needs (SCNS) of thyroid cancer (TC) patients after surgery, and to identity its influencing factors.MethodsBy convenience sampling method, total of 115 patients undergoing thyroid surgery who met the inclusion criteria from May 2021 to July 2021 were selected as the research objects. The general information questionnaire, Supportive Care Need Survey Short-Form (SCNS-SF34), functional subscale of European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) were used to investigate these patients.ResultsThe average score for the items of SCNS-SF34 in 102 TC patients was 2.15 ± 0.71. The domain with the highest item average score was “health system information needs” (2.48 ± 1.17). The domain with the highest unsatisfied rate was “psychological needs” (69.6%). The item with the highest average score was “fear of cancer spreading” in the psychological needs domain (2.80 ± 1.48). The scores of physical function (r = −0.431, P < 0.001), role function (r = −0.428, P < 0.001), cognitive function (r = −0.531, P < 0.001), emotional function (r = −0.388, P < 0.001), social function (r = −0.464, P < 0.001) were correlated with the total score of SCNS-SF34. The univariate analysis of SCNS-SF34 scores showed that TC patients who were women (t = 2.013, P = 0.047), older (F = 1.353, P = 0.013), and with longer hospital stays (F = 3.705, P = 0.028) had higher demand of SCNS. The results of multiple linear regression analysis showed that the significant variables that entered the regression equation were gender, age, length of stay in hospital, cognitive function and social function (P < 0.05).ConclusionTC patients after surgery have many SCNS in different domains. It is necessary to focus on women, older patients, patients with long hospital stays and poor functioning. The implementation of a supportive care screening tool is recommended and the individualized interventions need to be developed to provide targeted support and care.

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

Cited by 5 publications

References 39 publications

Analysis of Unmet Information Needs Among Patients With Thyroid Cancer

Analysis of Unmet Information Needs Among Patients With Thyroid Cancer

Thyroid Lobectomy for Low to Intermediate Risk Differentiated Thyroid Cancer

The supportive care needs and its influencing factors among thyroid cancer patients after surgery: A cross-sectional study

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