InternatIonal Survey reSultS from thyroId CanCer...
Transcript of InternatIonal Survey reSultS from thyroId CanCer...
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).