IntroductIon and objectIvesPublished studies on the thyroid cancer patient journey (1-

29) generally have utilised physician- or nurse-designed rather

than patient-designed survey instruments. Frequently, these

studies’ samples have been relatively small, and have comprised

only referral centre patients. Moreover, the studies often have

focused on particular thyroid cancers and on relatively narrow

areas rather than on a broader range of the patient experience.

The Thyroid Cancer Alliance (TCA), a coalition of eight national

thyroid cancer patient advocacy and support organisations

from Europe and the Americas, has sought to address these

gaps. We therefore, in cooperation with Genzyme Corporation,

conducted an international survey of patients with any

primary thyroid tumour regarding their experiences with their

disease and its care, including both treatment and support.

The survey utilised a questionnaire designed by patients

with the support of a professional market research firm.

This project’s objectives included:

• Identifyingareasforimprovementinthecareofpatientswiththyroid cancer

• Elucidatinghowthyroidcancershavebeentreatedindifferentnations in recent years, and how treatment protocols differ from country to country

• Assessingthelifeimpactsofathyroidcancerdiagnosisfromawide range of patients.

The TCA will use the survey findings to stimulate further

research and to educate the thyroid cancer community,

including patients, families, caregivers and administrators.

MethodsAssisted by a professional market research firm, representatives

of several TCA member organisations designed an anonymous

43-item self-report questionnaire that elicited categorical

or quantitative data and took approximately 10 min to

complete. The instrument was developed in English and

was translated into French, German and Spanish.

The questionnaire was posted online on a dedicated website, which

was linked on the TCA organisations’ websites. TCA organisation

members then were invited via e-mail, website notices or both

to complete the survey. Additionally, the questionnaire was

administered in person to patients at one thyroid cancer clinic

eachintheUKandItaly,andwassentbyposttopatients

followed at another UK clinic. A professional market research firm

assisted with data collection and analysis. Data were collected

in March 2010. Only fully completed surveys were analysed.

results and dIscussIonRespondent characteristics

Table 1 summarises the characteristics of the survey respondents.

Intotal,2398peoplecompletedthequestionnaire,including2195

(91.5%)onlineand203(8.5%)attheclinicsorviapostalresponse.

Nearly90%ofrespondentswerefemaleandnearly90%

had differentiated thyroid carcinoma. Diagnosis occurred

atages30-59yearsin57.1%ofrespondents,and<1(1-

5)year(s)beforesurveycompletionin16.4%(55.0%).

First specialist visit frequently delayed

Twenty-seven percent of respondents reported a ≥4-week wait

from the time of the referral until their first specialist visit

(Figure 1A), a situation that was especially common among

French, British and Canadian respondents (Figure 1B).

Support and information gap

The vast majority of respondents were not offered additional

support from an oncology nurse or other support specialist,

psychological support, or details of a patient organisation

(Figure 2A). Additionally, almost 2/3 of respondents reported

not receiving clear written information about their disease and

its treatment. Disease information, treatment information,

psychological support, and introductions to patient support groups

or fellow patients comprised the five most commonly suggested

areas for improvement in care by survey respondents (Figure 2B).

Post-surgical symptoms frequent and frequently persisting

Alittleover54%ofrespondentsreportedasinglenecksurgery

forthyroidcancer,and45.1%reportedtwoormoresuch

procedures. Post-surgery problems were frequent, with several

symptoms reported by more than a quarter of respondents

undergoinganeckoperation(n=2380)(Figure 3).

At least some post-surgery symptoms remained unresolved in 1010

respondents,whichcorrespondedto57.9%ofthosenotingsuch

symptoms(n=1743)and42.4%ofthoseundergoingneckoperations

forthyroidcancer(n=2380).Severalofthesymptoms,namely,low

blood calcium levels (parathyroid), voice problems, numbness, and

restricted neck/shoulder movement, persisted in more than one third

of affected respondents (Figure 3). The survey did not elicit the time

sincesurgery;however,themeantimesincediagnosiswas5.1years.

conclusIons Our results should be interpreted cautiously: as in all such surveys,

a selection bias may exist among respondents for individuals

with notably negative or positive experiences with thyroid

cancer. Nonetheless, this very comprehensive survey takes

into account responses from a large, diverse sample of thyroid

cancer patients in many countries – including a considerable

proportion treated outside referral centres. The survey thus offers

a wealth of information for the thyroid cancer community:

1. The appreciable rate of delay in the first specialist visit

suggests a need for generalist and specialist physicians and

healthcare administrators to ensure streamlined referral and

appointment systems; there may be a need for additional

specialists and specialised treatment centres in some areas.

2. There appears to be a strong need for improved support and

information at the stage of diagnosis and primary treatment.

3. The substantial rates of surgical complications may suggest a

need to more frequently use surgeons specialising in thyroid

and neck procedures, in line with current medical consensus.

acknowledgMentsData collection and analysis were provided by Holden-Pearmain

Research, editorial assistance in the development of this poster

was provided by Spencer-Fontayne Corporation, and graphic design

wasprovidedbyRobertW.LehnhardtIII.GenzymeCorporation

compensated these vendors for this work. Rita Banach, Kate

FarnellandJoanSheyservedontheTCAITCPosterCommittee.

*TCAmemberorganisations:ACTIRA:AsociaciónCáncerTiroides

República Argentina, Argentina; Butterfly Thyroid Cancer Trust,

United Kingdom (lead organisation on survey); Light of Life

Foundation,USA(leadorganisationonTCApostcardforITC);Nordisk

Thyreoidea Samarbeid, Scandinavia; Ohne Schilddrüse leben e.V.,

Germany;ThyCa:ThyroidCancerSurvivors’Association,Inc.,USA;

Thyroid Cancer Canada/Cancer de la thyroïde Canada, Canada (lead

organisationonITCposterdevelopment);Vivresansthyroïde,France

references1. Dowetal.Thyroid1997;7:613-6192. Dowetal.CancerPract1997;5:289-2953. Freyeretal.AnnOncol1999;10:87-954. Stajduharetal.OncolNursForum2000;27:1213-12185. Freyeretal.AnnOncol2001;12:1461-14656. Crevennaetal.SupportCareCancer2003;11:597-6037. Botella-Carreteroetal.EndocrRelatCancer2003;10:601-6108. Daganetal.JLaryngolOtol2004;118:537-5429. Mendoza et al. Thyroid 2004;14:133-14010. Larischetal.HormMetabRes2004;36:650-65311. Giustietal.JEndocrinolInvest2005;28:599-60812. Lusteretal.Thyroid2005;15:1147-115513. Tagayetal.EurJEndocrinol2005;153:755-76314. Tagayetal.QualLifeRes2006;15:695-70315. Chowetal.Laryngoscope2006;116:2060-206616. Schroederetal.JClinEndocrinolMetab2006;91:878-88417. Hoftijzeretal.JClinEndocrinolMetab2008;93:200-20318. VanNostrandetal.ThyroidCancer:AGuideforPatients.2nded.

Pasadena, MD, USA: Keystone Press; 201019. Leeetal.Thyroid2010;20:173-17920. Schultzetal.HeadNeck2003;25:349-35621. Hirschetal.Thyroid2009;19:459-46522. Malterlingetal.ActaOncol2010;49:454-45923. Almeidaetal.ArchOtolaryngolHeadNeckSurg2009;135:342-34624. Sawka et al. PLoS One 2009;4:e419125. Robertsetal.JCancerEduc2008;23:186-19126. Pelttarietal.ClinEndocrinol(Oxf)2009;70:493-49727. Tanetal.Laryngoscope2007;117:507-51028. Shahetal.JOtolaryngol2006;35:209-21529. Kungetal.MayoClinProc2006;81:1545-1552

InternatIonal Survey reSultS from thyroId CanCer PatIentS

characterIstIc %(n)

thyroid cancer type

Any differentiated 87.1%

Papillary 65.0% (1558)

Follicular 8.7% (209)

Mixed papillary/follicular 11.7% (281)

Hürthle cell 1.7% (40)

Medullary 4.4%(105)

Familial 1.0% (25)

Anaplastic 0.5%(11)

Other 3.4%(81)

Don’t know 4.7%(113)

Percentages may not add up exactly to totals or subtotals due to rounding.

*

table 1. selected characteristics of survey respondents (n = 2398)

characterIstIc %(n)

reported country of residence

United States 38.3%(919)

Germany 21.3%(510)

United Kingdom 11.5%(276)

Canada 11.4%(274)

France 9.0%(217)

35othercountries 8.4%(202)

gender

Female t87.2%(2091)

characterIstIc %(n)

age at thyroid cancer diagnosis

≤19 yrs 4.3%(103)

20-29 yrs 18.2%(436)

30-39 yrs 32.2%(771)

40-49 yrs 24.9%(598)

50-59yrs 14.7%(353)

60-69yrs 4.9%(117)

≥70yrs 0.8%(20)

characterIstIc%(n)

time since diagnosis

<1yr 16.4%(394)

1-5yrs 55.0%(1318)

6-10yrs 17.8%(427)

11-15yrs 5.5%(133)

≥16yrs 5.3%(126)

Patients reporting known persistent disease 19.6%(470)

Patients reporting known distant metastases 14.1%(338)

Psychological support

92.6%

6.0%

1.5%

Additional support from an oncology nurse or other support person

76.9%

19.8%

3.2%

Details on patient organisation

84.1%

14.0%2.0%

Clear written information on disease and treatment

63.0%

34.6%

2.4%

Not offered Offered Don’t know

fig. 2a. availability to respondents (n = 2398) of various forms of support and information. Percentages may not add exactly due to rounding.

0 5 10 15 20 25 30 35

8.5%

30.9%

29.5%

19.5%

7.5%

4.0%

No wait

<2 wks

2-4 wks

>4wks-3 mos

>3 mos

Unknown

Percentage of respondents (n = 2398)

fig. 1a. Proportion of respondents (n = 2398) with various wait times from referral to the first specialist visit.

Low bloodcalcium levels(parathyroid)

Voiceproblems

Numbness

Restrictedneck/shoulder

movement

Vocalcord palsy

Infection

Other

38.8%

36.2%

28.7%

27.6%

11.3%

3.1%

17.5%

Percentage of respondents

Unresolved complicationsResolved complications

37.2%

46.3%

36.9%

43.5%

12.3%

53.4%

35.0%

0 5 10 15 20 25 30 35 40

fig. 3. reported post-surgical complications. Percentages to right of bars give the prevalence of a given complication among respondents who underwent neck surgery for thyroid cancer (n = 2380). Proportions of respondents in whom the complication was resolved (not resolved) are indicated by the light blue (dark blue) portions of each bar. for each complication, the percentage of cases that had not resolved by the time of questionnaire completion is given underneath the bar.

no post-surgery complications were reported by 27.5% (655/2380) of respondents who underwent neck surgery.

fig. 1b. Proportion of respondents who waited >4 weeks from referral to the first specialist visit for the five countries with the most survey respondents (91.6% of respondents in total).

0 10 20 30 40 50 60

35.5%

16.3%

19.9%

42.4%

50.7%Canada(n = 274)

France(n = 217)

Germany(n = 510)

United States(n = 919)

United Kingdom(n = 276)

Percentage of respondents

0 10 20 30 40 50

45.0%

43.1%

42.5%

34.0%

26.8%

23.9%

16.6%

16.0%

22.4%

More informationabout disease

Introductionto patient

support groups

Psychologicalsupport

Clear informationabout treatment

options

Introduction to afellow patient

Quicker accessto test results

Access toa specialist/

oncology nurse

Easier access tocancer care teams

Other

Percentage of respondents

fig. 2b. Improvements in care suggested by respondents (n = 2398).