Quality-of-Life Priorities in Patients with Thyroid Cancer: A Multinational European Organisation for Research and Treatment of Cancer Phase I Study

Abstract

Background:

The objectives of this study were to determine quality of life (QoL) issues that are relevant to thyroid cancer patients cross-culturally, and to identify those with highest relevance to them in addition to the more general issues covered by the core European Organisation for Research and Treatment of Cancer QoL questionnaire (EORTC QLQ-C30).

Methods:

A systematic literature search provided a list of potentially relevant QoL issues to supplement the core questionnaire EORTC QLQ-C30, which is widely used in research and in care and addresses QoL issues relevant to all groups of cancer patients. A panel of experts revised this list, and thyroid cancer patients rated the issues regarding their relevance for QoL by selecting the 25 issues that they would include in a thyroid cancer–specific QoL module.

Results:

The literature search and expert discussion provided a list of 71 QoL issues that was rated by thyroid cancer patients (n = 110) from seven countries. All issues were of high priority to at least some of the patients. The most frequently selected issues were sudden attacks of tiredness, exhaustion, quality of sleep, employment, social support, fear of cancer progression, fear of second operation, difficulties swallowing, and globus sensation.

Conclusions:

Thyroid cancer patients cross-culturally rate fatigue-related issues as highly important for their QoL, calling for increased efforts to find successful treatments for this problem. Vocational rehabilitation is also highly relevant for them and should therefore be an important aim of multidisciplinary care. The third important area of concern is psychological issues, especially fear of progression and of additional treatments.

Introduction

Clinicians aim to achieve the best outcomes for their patients. But what is the “best outcome”? Of course, most people consider death as an outcome to be avoided and longevity as something for which to strive. When it comes to quality of life (QoL), however, things become more complicated as individual values come into play (1). For example, a 30-year-old teacher who is passionate about her work and who is diagnosed with thyroid cancer perhaps finds it most important to keep a good voice so that she can pursue her work. For another person with the same diagnosis but with different priorities in life—say, a 68-year-old pensioner—the quality of the voice may be less important. Such differences in opinion exist not only between patients but also between an individual patient and his physician, between a doctor and her hospital manager, or between a hospital manager and the insurance company.

Value-based medicine sets out to address such disagreements (2). It is a method of integrating the different values by one common metric: money spent per quality-adjusted life-year gained (2,3). In the United States, healthcare is already paid according to this value-based system (4). The aim of this new system is to enable societies to apply new (often costly) medical treatments, despite limited financial resources. Consequently, more and more clinical trials include value-based criteria when defining their outcomes of interest. To this end, researchers need to know what QoL issues are most important for the majority of patients with a certain disease. However, value-based medicine should not only be understood as a method to ensure cost-effectiveness of a medical treatment but as an approach trying to address the complexity of different values in clinical decision making. The importance of this has been underlined by the U.S. Food and Drug Administration in their guidance for industry to use patient-reported outcomes for medical product development (5).

In the treatment of patients with thyroid cancer, QoL plays a major role, as their prognosis is usually very good (6,7). In addition, thyroid cancer tends to affect patients of a younger age compared with other malignancies (8,9). There is evidence that young age at diagnosis may be a risk factor for decreased QoL (10).

While some studies reported that individuals with thyroid cancer generally have a QoL that is comparable to those in the general population (11,12), most have found an impaired QoL (13 –21) comparable to patients from other tumor sites (21,22).

The management of thyroid cancer is multidisciplinary, requiring active consultation and intervention using surgery, nuclear medicine, and medical treatment. This can have profound effects on the patients’ physical, social, and psychological well-being. Some of the QoL issues specific to thyroid cancer are related to temporary hormone withdrawal, resulting in severe fatigue, neurological deficiencies, and problems associated with appetite, memory, depression, motor skills, and the bowel. Damage to laryngeal nerves during thyroid surgery can result in voice issues as well. With the use of recombinant human thyrotropin (rhTSH) for ablation of postsurgical thyroid remnants after low-dose radioactive iodine (RAI) therapy, compared with conventional thyroid hormone withdrawal, fewer symptoms occur, and patients have more vitality and energy at the time of application (23,24). However, QoL deficits remain a problem, not only during treatment but also in the long-term (19,25,26).

For the planning of clinical trials, it is important to know what QoL issues are of highest priority to patients. In the Netherlands, Husson et al. identified the following issues as most important to thyroid cancer survivors (n = 18): stressfulness of diagnosis (82%), attention problems, decreased concentration, sudden attacks of fatigue (each 76%), problems with memory, problems with thinking, and stressfulness of RAI treatment (each 71%) (27).

From a multinational perspective, the present study aimed to identify the prioritized QoL issues in patients from different cultural and societal backgrounds in addition to the more general issues covered by the European Organisation for Research and Treatment of Cancer (EORTC) QoL core questionnaire (EORTC QLQ-C30). The objective of this study was to determine the thyroid cancer–specific QoL issues that are most relevant to thyroid cancer patients cross-culturally.

Methods

Identification of issues

To prepare a provisional list of QoL issues to be evaluated by patients, a systematic review was performed. It identified QoL questionnaires that are already in use with thyroid cancer patients and studies investigating QoL in thyroid cancer patients. For this review, it was possible to build on previous work (28). This search was updated to make sure that it was comprehensive, including the years 2010–2013, because this work only included studies up to February 2010.

The search strategy was as follows:

• published from 2010 to 14th January 2013 ( = day of the search);

• search engine: Web of Science (including MEDLINE, SciELO Citation Index, Science Citation Index Expanded, and Social Sciences Citation Index);

• search terms: thyroid AND cancer or oncol* or neoplasm* or tumor* or tumour* AND “quality of life”

• inclusion criteria: study investigated QoL of patients with thyroid cancer and was an original article; and

• exclusion criteria: objective was to describe the relation of QoL with other variables such as mood states, without the description of QoL itself.

All issues mentioned in the studies were listed, duplicates were removed, and issues with similar content were grouped. All issues that are covered by the EORTC QLQ-C30 (e.g., nausea, vomiting) or that are not QoL issues (e.g., high blood pressure) were excluded. This list was discussed within the thyroid module developing group of the EORTC QoL Group, and the group of experts decided to keep, remove, or change the issues. The following professions were represented in the group of experts: nuclear medicine, radiation oncology, medical oncology, laryngo-rhino-otology, general surgery, psychology, epidemiology, rehabilitation, dentist, nurse, and nutritionist. The final list of issues was translated following the guidelines of the EORTC Quality of Life Group (29,30).

Data collection

The consolidated list of QoL issues was completed by thyroid cancer patients together with the QLQ-C30. In a debriefing semi-structured interview with predefined questions, patients were asked to pick the 25 most important issues that they would like to have included in a questionnaire, and to indicate relevant issues missing from this list. Missing issues mentioned by the patients were written down using the patients’ wording.

Socio-demographic (age, sex, education) and clinical characteristics (histology, TNM stage, time since diagnosis, treatment) were documented on case-report forms by the interviewer. All clinical data were obtained from the patients’ medical charts.

Sampling

Male and female patients, aged ≥18 years of age, and with all types and stages of thyroid cancer (International Classification of Diseases v10, code C73) were eligible for this study. Given the epidemiology of thyroid cancer types, the intention was to include more patients with follicular and papillary cancer than patients with medullary and anaplastic types. However, it was also important to make sure that the rarer disease types were represented as well. Therefore, the target sample size was: at least 25 for patients with follicular cancer, 25 for patients with papillary cancer, 15 for medullary cancer, and 15 for patients with anaplastic cancer in order to ensure that sufficient patients were in each group to represent their priorities reliably, in accordance with the EORTC module development guidelines (30). Consecutive patients attending the collaborating institutions were screened for eligibility and asked to participate. The enrolment was monitored monthly by the principal investigator and fed back to the collaborators to ensure that the sampling complied with the predefined sampling matrix. Patients were interviewed before, during, or after thyroid cancer treatment. Exclusion criteria were insufficient command of the local language and no written informed consent.

Statistical analysis

Data entry, cleaning, and analysis were conducted at Mainz University using STATA v10 (StataCorp LP, College Station, TX). During patient enrolment, regular analyses regarding the frequency of patients’ treatment types, cancer histology, and geographical area were performed and fed back to the multinational team of collaborators every month.

For the final analysis, the frequencies of issue priorities were calculated. Finally, a ranking of the issues was performed, starting from highest priority to lowest. This was done for the entire patient sample and for predefined subgroups (differentiated vs. medullary vs. anaplastic thyroid cancer; <50 vs. ≥50 years old; geographical area).

Ethics, data protection, and study registration

This investigation was approved by the ethical committee of Rhineland-Palatinate, Germany, functioning according to the 3rd edition of the Guidelines on the Practice of Ethical Committees in Medical Research issued by the Royal College of Physicians of London.

Ethical approval was also obtained from the local ethical committees in each country. Confidentiality of the data was ensured by using pseudonyms (patient identification numbers) on each questionnaire and data form. No person-identifying information was stored together with the medical and patient-reported outcome data. The study was registered at the EORTC Headquarters (# EORTC QLQ-THY_Phase I).

Results

Issues identified from the literature

In addition to the review performed by Husson et al., 118 potentially relevant studies were identified of which 109 were excluded according to the selection criteria based on abstract screening, and nine full articles were read. Two of them fulfilled the inclusion criteria, and one additional study was found in the reference lists that had not been included in previous searches, resulting in three new studies (15,31 –33). The consolidated list of issues resulting from both reviews, with duplicates and non-eligible issues removed, containing 112 items, was discussed with all collaborators at a face-to-face meeting. As a result, 44 issues were removed, 38 issues were kept, one new issue created, and 30 issues were reworded. Main reasons for removal were that the issue was already covered by the EORTC QLQ-C30, with one exception. Because fatigue was such an important issue in all of the papers reviewed, the group decided to include additional (and more specific) issues to complement those in the EORTC QLQ-C30. Other reasons for removal were that issues were too similar, and it was discussed which of the issues in question would be most suitable for the patients. The results of this discussion, together with explanations about why an issue was removed or changed, are displayed in Supplementary Table S1 (Supplementary Data are available online at www.liebertpub.com/thy).

Translations

While preparing the list of issues for translation, it became clear that some of the issues are difficult to translate or unclear regarding what they actually cover. For example, the question arose whether there is a difference between “being judged” (issue 6) and “social stigmatization” (issue 5). This was discussed with the EORTC Translation Unit, and a revised list emerged containing 71 issues (Supplementary Table S2). This list was translated from English into Dutch, French, German, Greek, Hungarian, Italian, Japanese, Polish, and Portuguese following a standardized forward-backward procedure with the help of several collaborators and the EORTC Translation Unit. For Austria and Germany, two independent translations were performed into German, and differences were resolved by discussion.

Patient sample

Patient interviews were conducted between 2013 and 2014 in eight centers from seven countries, contributing altogether 110 patients. Patients came from the following countries: Germany (n = 18), Austria (n = 5), The Netherlands (n = 22), the United Kingdom (n = 7), Poland (n = 20), Italy (n = 18), Portugal (n = 6), and Japan (n = 14).

Women represent 65.5% of the sample, which is equivalent to the true distribution in thyroid cancer patients, which occurs more often in women. Half of the patients had papillary disease (n = 55), followed by follicular (n = 30), medullary (n = 17), anaplastic (n = 4), and other cancer (n = 4; Table 1). Other histologies were Hürthle cell carcinoma (n = 2), follicular oncocytic (n = 1), and follicular differentiated papillary cancer (n = 1).

Table 1.

Socio-Demographic and Clinical Characteristics of the Study Participants (n = 110)

	Frequency	%
Sex
Male	38	34.6%
Female	72	65.5%
Age (years)
<40	22	20.0%
40–49	19	17.3%
50–59	29	26.4%
60–69	18	16.4%
70–79	17	15.5%
≥80	4	3.6%
Unknown	1	0.9%
Education
Compulsory or less	19	17.3%
Post compulsory	56	50.9%
University level	31	28.2%
Unknown	4	3.6%
Histology
Follicular	30	27.3%
Papillary	55	50.0%
Medullary	17	15.5%
Anaplastic	4	3.6%
Other	4	3.6%
T
T1	26	23.6%
T2	22	20.0%
T3	38	34.6%
T4a	5	4.6%
T4b	1	0.9%
Tx	2	1.8%
Missing	16	14.6%
N
N0	55	50.0%
N1a	13	11.8%
N1b	23	20.9%
Nx	3	2.7%
Missing	16	14.6%
M
M0	70	63.6%
M1	25	22.7%
Mx	11	10.0%
Missing	4	3.6%

The mean Karnofsky performance score was 91 (standard deviation [SD] = 11; range 30–100). Time since first diagnosis varied from 1 day to 37 years, with a median of 4.7 years (M = 6 years). This distribution of time since diagnosis was similar across the majority of histology types (i.e., papillary, follicular, and medullary thyroid cancer), but distinctly shorter in patients with anaplastic cancer (M = 0.7 years; min = 7 days, max = 2 years).

Patients had received different types of treatment, depending on the histology and stage of their disease. The majority (85%) underwent total thyroidectomy (Table 2).

Table 2.

Treatment of the Study Participants (n = 110)

Treatment	Frequency	%
Thyroidectomy
None	2	1.8%
Hemithyroidectomy	12	10.9%
Partial thyroidectomy	2	1.8%
Total thyroidectomy	93	84.6%
Missing	1	0.9%
Neck dissection
None	44	40.0%
Unilateral	18	16.4%
Bilateral	29	26.4%
Central	5	4.6%
Missing	14	12.7%
Radioactive iodine therapy
Never/not yet	30	27.3%
Last therapy >6 months before interview	61	55.5%
Last therapy <6 months before interview	14	12.7%
Currently receiving treatment	5	4.6%
Tyrosine kinase inhibitors
Never/not yet	86	78.2%
Last therapy >6 months before interview	1	0.9%
Last therapy <6 months before interview	2	1.8%
Currently receiving treatment	21	19.1%
Chemotherapy
Never/not yet	105	95.5%
Last therapy >6 months before interview	3	2.7%
Last therapy <6 months before interview	1	0.9%
Currently receiving treatment	1	0.9%
Radiotherapy
Never/not yet	85	77.3%
Last therapy >6 months before interview	13	11.8%
Last therapy <6 months before interview	2	1.8%
Currently receiving treatment	3	2.7%
Missing	7	6.4%

Many patients had received RAI in the past, and the most frequent current treatment was tyrosine kinase inhibitors (TKI). Systemic therapy or chemotherapy is usually only considered in patients with M1 disease and in patients with non-differentiated thyroid tumors. Therefore, only five patients in the sample had received this in the past. About half of the patients (48%) were under hormone suppression at the time of the interview, and 19% received rhTSH.

Priority of issues

Of the 71 issues presented to the patients, 53 were chosen by at least 20% of the patients as high priority (i.e., they chose this issue as one of the 25 issues that should be part of a QoL questionnaire). Thirteen issues were chosen by at least 40% of the patients (see Fig. 1 for the 25 top-ranking issues). All issues were selected by at least 9/110 (8%) patients. Thus, each issue was of high priority to at least some patients.

FIG. 1.

Quality-of-life issues with highest priority ranking in thyroid cancer patients. Displayed is the percentage of respondents choosing the particular issue as one of the 25 most important issues.

QoL issues most frequently selected were (in descending order): being afraid of recurrence of disease, social support from family and friends, quality of sleep, sudden attacks of tiredness, social support from healthcare providers, physical exhaustion, employment, being afraid of second operation, globus sensation, and mental exhaustion.

Top priorities in different subgroups

Table 3 displays the 15 top-ranking issues in pre-specified groups according to histology (patients with differentiated vs. medullary vs. anaplastic cancer), age (<50 years vs. ≥50 years), and geographical area (Asia vs. Europe). In all groups, social support by healthcare providers and by family and friends was highly ranked. In all groups except in patients with anaplastic cancer, being afraid of disease recurrence, employment, and sudden attacks of tiredness were highly ranked. Physical exhaustion was selected by all groups except for the medullary cancer patients.

Table 3.

Top 15 Quality-of-Life Issues in Different Groups of Thyroid Cancer Patients

	Histology						Age				Region
Rank	DTC (n = 89)	%	Medullary (n = 17)	%	Anaplastic (n = 4)	%	<50 years (n = 41)	%	≥50 years (n = 68)	%	Europe (n = 96)	%	Asia (n = 14)	%
1	Being afraid of recurrence of disease	67%	Discomfort in the neck	82%	Discomfort in the neck	100%	Being afraid of recurrence of disease	80%	Being afraid of recurrence of disease	55%	Being afraid of recurrence of disease	64%	Unanswered questions about disease or treatment	86%
2	Social support from family and friends	58%	Social support from families and friends	76%	Speech problems	100%	Social support from family and friends	76%	Social support from HCP	53%	Social support from family and friends	61%	Being a burden to others	71%
3	Physically exhausted	53%	Social support from HCP	76%	Weak voice	100%	Quality of sleep	73%	Social support from family and friends	51%	Quality of sleep	59%	Social support from HCP	71%
4	Sudden attacks of tiredness	52%	Quality of sleep decreased	76%	Facial swelling	100%	Employment	63%	Sudden attacks of tiredness	48%	Sudden attacks of tiredness	48%	Sudden attacks of tiredness	71%
5	Quality of sleep	52%	Difficulty breathing	71%	Being a burden to others	75%	Physically exhausted	61%	Quality of sleep	46%	Employment	47%	Physically exhausted	71%
6	Employment	48%	Voice changes	71%	Social support from families and friends	75%	Sudden attacks of tiredness	58%	Physically exhausted	44%	Social support from HCP	47%	Muscle pain	71%
7	Being afraid of second operation	45%	Globus sensation	71%	Social support from HCP	75%	Being afraid of second operation	56%	Mentally exhausted	43%	Physically exhausted	47%	Being afraid of recurrence of disease	71%
8	Social support from HCP	44%	Restlessness	69%	Mentally exhausted	75%	Globus sensation	54%	Speech problems	41%	Globus sensation	45%	Movement of arm or shoulder	64%
9	Mentally exhausted	43%	Weak voice	65%	Pain in the throat	75%	Fertility	51%	Employment	40%	Difficulties swallowing	43%	Being afraid of second operation	64%
10	Unanswered questions about disease or treatment	41%	Difficulties swallowing	65%	Chewing	75%	Problems with weight gain	51%	Discomfort in the neck	39%	Restlessness	42%	Worried about lifelong medication	64%
11	Globus sensation	38%	Tolerance of cold or heat	65%	Hoarseness	75%	Tolerance of cold or heat	49%	Difficulties swallowing	38%	Discomfort in the neck	42%	Employment	57%
12	Palpitations	37%	Employment	59%	Voice changes	75%	Voice changes	46%	Dry mouth	38%	Mentally exhausted	41%	Social support from family and friends	57%
13	Being a burden to others	37%	Sudden attacks of tiredness	59%	Swelling in the cheeks	75%	Restlessness	46%	Pain in the joints	37%	Being afraid of second operation	40%	Mentally exhausted	57%
14	Difficulties swallowing	36%	Palpitations	59%	Being slow	75%	Social support from HCP	45%	Difficulty breathing	37%	Difficulty breathing	39%	Speech problems	57%
15	Hoarseness	35%	Been afraid of recurrence of disease	59%	Physically exhausted	50%	Being a burden to others	44%	Palpitations	36%	Voice changes	39%	Problems with hair loss	57%

The percentages represent the proportion of respondents choosing the particular issue as one of the 25 most important issues.

DTC, differentiated thyroid cancer; HCP, healthcare provider.

Issues highly ranked in 5/7 groups were mental exhaustion and quality of sleep. Four of the groups prioritized being afraid of a second operation, being a burden to others, difficulties swallowing, discomfort in the neck, globus sensation, and voice changes.

Issues that were highly ranked only in one of the groups were: fertility and problems with weight gain in younger patients only; dry mouth and joint pain in older patients; muscle pain, movement of arm or shoulder, problems with hair loss, and worries about lifelong medication only in Asian patients; chewing, facial swelling, pain in the throat, being slow, and swelling in the cheeks only in patients with anaplastic cancer (see Supplementary Tables S3–S6 for further group comparisons).

Discussion

The aims of this study were to determine QoL issues that are relevant to thyroid cancer patients cross-culturally, and to identify the QoL issues with highest relevance to thyroid cancer patients. From the literature, 71 QoL issues were identified that were of potential relevance to patients in addition to the core issues covered by the EORTC QLQ-C30, and all of them were selected as highly relevant by at least some of the patients.

In all groups of patients, fatigue was a commonly prioritized QoL issue. Though fatigue is an important problem for cancer patients in general (34,35) and one of the major components of QoL, together with pain (36), this issue seems particularly important in patients with thyroid cancer (11,20,37 –39) due to its treatment and due to the affected hormonal regulation. Fatigue is a common side effect of the new TKIs (40). For example, in a recent trial comparing lenvatinib versus placebo in radioiodine-refractory thyroid cancer, fatigue occurred in 60% of the patients under lenvatinib compared with only 28% of the patients with placebo (41).

Interestingly, the study participants frequently mentioned “sudden attacks of tiredness” as an important issue, along with “quality of sleep.” Both issues are not often recognized as relevant in QoL questionnaires for cancer patients. The specificity of these symptoms shows how different the world of these patients is compared with other cancer patients. It may place them in a disadvantaged position, as the clinics seem at times alienated from and insensitive to this reality.

Another frequently selected issue was employment. As thyroid cancer often affects patients at a relatively young age, the disease and its treatment may have an impact on their ability to work (42). Hence, successful vocational rehabilitation is an important aim of care. A study from the United States revealed that thyroid cancer patients are at higher risk of bankruptcy than other cancer patients are whose disease is more aggressive (43). In Israel, the income of thyroid cancer patients two and four years after diagnosis has recently been shown to be lower than in the general population, presumably because of part-time jobs and/or reduced physical functioning (44). Interestingly, in the present study, it was not only young patients who had selected this issue as highly relevant, but also participants >50 years of age. This may imply that patients do not like the idea of early retirement; instead they strive to stay in the workforce as long as possible.

The third area of concern for most patient groups was fear of progression. Again, this is a factor that is known to be relevant for cancer patients in general (45,46), but it is striking to see that this issue was on the first rank in 4/7 groups under study. Similarly, support from healthcare professionals and from relatives and friends was mentioned by all patient groups as one of the top priorities for QoL questionnaires. Interestingly, three-quarters of the patients with anaplastic and medullary cancer selected support from healthcare providers as highly important compared with half of the patients with differentiated thyroid tumors, probably also reflecting a higher need for support in this group. Both issues—fear of recurrence and social support—are not specific to thyroid cancer patients but apply to cancer patients and survivors in general (47,48). It should be noted though that the thyroid cancer patients prioritized it highly. It is possible that they find it especially important, probably even more than other cancer patients, as they often experience devaluation of their anxieties by healthcare professionals who sometimes consider thyroid cancer to be the “good cancer” because of its usually good prognosis (19). However, for a patient, cancer is cancer, and this feels threatening (25,49).

The results of this study should be seen in the light of its limitations. The differences found between the patient groups are interesting but should be interpreted with caution. As rankings were compared, it was not possible to adjust for relevant covariates when comparing groups. For example, 86% of the patients in Japan selected “unanswered questions about disease or treatment” as an important issue. This could imply that Japanese patients receive less information about the disease and its treatment than European patients do. Another explanation would be that they find it more important to get all their questions answered compared with Europeans. The Japanese experts in the group reported that in their experience, Japanese patients want to know everything, but when they are in front of their doctors, they hesitate to ask their doctors about their disease because they do not want to bother them about their disease or questions, even when the doctors encourage them to ask questions. This clinical observation is supported by a number of studies (50 –53). However, the group of Japanese patients might also differ from the European patients in terms of other socio-demographic or disease characteristics, creating a “false” correlation between cultural area and issue priority, attributable purely to confounding. For example, the Japanese patients reported more concerns about lifelong medication, which could be explained by the fact that most of them were treated with TKIs. As it was not possible to control for these factors statistically, as explained above, the focus should be on the shared QoL priorities, not on the differences between groups.

Another limitation is that it was not possible to include many patients with anaplastic thyroid cancer due to its low incidence and poor prognosis. After discussion within the expert group, a decision was made to calculate separate priority rankings as well for this group of patients, instead of combining medullary and anaplastic cancer patients into one group of non-differentiated thyroid cancer. Given the different prognosis and treatment of those patients this combination would have been arbitrary. It seemed preferable to have separate rankings. However, as the number of patients with anaplastic cancer was low, these patients may be not representative for the entire group of patients with this histology.

Keeping these limitations in mind, these data provide insight into the values of thyroid cancer patients regarding their QoL. The rankings can be used for developing a thyroid cancer–specific questionnaire to assess QoL, for clinical trials, and for daily practice when trying to base decisions on patient priorities (54). The interest of this work was to objectify issues related to the QoL of patients with thyroid cancer that in clinical practice are sometimes devalued or even denied (25). The British Thyroid Association has acknowledged this problem, and now focuses more on patient needs and QoL in their new guidelines (55) in order to improve patient care. In order to do so, site-specific questionnaires are needed to detect clinically relevant differences in QoL sensitively between groups or treatment arms. Generic tools are often not able to do so, as they do not cover all relevant aspects of QoL in this group of patients (56,57). The results of this study can be the basis for developing such questionnaires.

Footnotes

Acknowledgments

This study was funded by the European Organisation for Research and Treatment of Cancer, Quality of Life Group (EORTC QLG). The grant provided salary support for Ulrike Scheidemann-Wesp and per patient payment for the local investigators.

We would like to acknowledge the work of the anonymous colleagues who reviewed the grant proposal and the study report. We are grateful to the EORTC QLG Executive Committee for reviewing the study report and this paper.

The members of the EORTC QLG Executive Committee are: Lonneke van de Poll-Franse (chair), Mogens Groenvold, Krzysztof Tomaszewski, Bernhard Holzner, Deborah Fitzsimmons, Eva Greimel, Jaap Rijneveld, Andrew Bottomley, and Anne-Sophie Darlington.

The members of the EORTC Head and Neck Cancer Group Executive Committee are: Vincent Grégoire (chair), Silke Tribius, Guy Andry, Lisa Licitra, Sjoukje Oosting, Ingeborg Tinhofer, Andreas Dietz, Esat Ozsahin, Susanne Singer, Ana Ferreira, Renaud Lhommel, and Keith Hunter.

The members of the EORTC Endocrine Task Force Executive Committee are: Martin Schlumberger (chair), Lisa Licitra, Lars Bastholt.

Author Disclosure Statement

All authors declare that they have no conflict of interest that could be perceived as prejudicing the impartiality of the research reported.

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