International Survey Results from Thyroid Cancer Patients

(adapted from Poster Presentation, given at the International Thyroid Conference, September 2010)

Published studies on the thyroid cancer patient journey (references 1-29 below) 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:

• Identifying areas for improvement in the care of patients with thyroid cancer
• Elucidating how thyroid cancers have been treated in different nations in recent years, and how treatment protocols differ from country to country
• Assessing the life impacts of a thyroid cancer diagnosis from a wide 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.

 

 

 

Methods

Assisted by a professional market research firm, representatives of several TCA member organizations 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 organizations’ 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 each in the UK and Italy, and was sent by post to patients 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 Discussion

Respondent characteristics

Table 1 summarises the characteristics of the survey respondents.

In total, 2398 people completed the questionnaire, including 2195 (91.5%) online and 203 (8.5%) at the clinics or via postal response.

Nearly 90% of respondents were female and nearly 90% had differentiated thyroid carcinoma. Diagnosis occurred at ages 30-59 years in 57.1% of respondents, and <1 (1-5) year(s) before survey completion in 16.4% (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

A little over 54% of respondents reported a single neck surgery for thyroid cancer, and 45.1% reported two or more such procedures. Post-surgery problems were frequent, with several symptoms reported by more than a quarter of respondents undergoing a neck operation (n = 2380) (Figure 3). At least some post-surgery symptoms remained unresolved in 1010 respondents, which corresponded to 57.9% of those noting such symptoms (n = 1743) and 42.4% of those undergoing neck operations for thyroid cancer (n = 2380).

Several of the symptoms, 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 since surgery; however, the mean time since diagnosis was 5.1 years.

Symptomatic hypothyroidism very common during thyroid hormone withdrawal (THW)

Eighty-one percent of survey respondents stopped taking thyroid hormone to prepare for radioiodine therapy; such withdrawal lasted 4.1 weeks on average. A majority of patients undergoing THW (n= 1621) reported hypothyroid morbidity (Figure 4). Potentially life-disrupting symptoms, depression and inability to concentrate/ think straight, were reported by more than half to just over 3/4 of respondents each, as were weight gain and feeling cold.

Thyrogen [Recombinant human thyrotropin (rhTSH)] infrequently offered but very widely preferred over THW

A minority of respondents (752/2011, 37.4%) receiving radioiodine therapy were offered rhTSH.   Among radioiodine recipients expressing a preference between rhTSH and THW (n = 816), 97.1% preferred rhTSH, and 2.9%, THW.

 

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.

4. THW is very frequently associated with hypothyroid morbidity, including potentially life-disrupting mood and cognitive disorders. Making rhTSH more widely available may alleviate this problem.

View survey results specific to Canadians

View Press Release

View PowerPoint Presentation of global results

 

Media Coverage of the Results

London Free Press, Sept 12, 2010

Globe & Mail, Sept 14, 2010

Acknowledgments

Data collection and analysis were provided by Holden-Pearmain Research, editorial assistance in the development of this summary was provided by Spencer-Fontayne Corporation, and graphic design was provided by Robert W. Lehnhardt III. Genzyme Corporation compensated these vendors for this work. Rita Banach, Kate Farnell and Joan Shey served on the TCA ITC Poster Committee.

*TCA member organizations: ACTIRA: Asociación Cáncer Tiroides República Argentina, Argentina; Butterfly Thyroid Cancer Trust, United Kingdom (lead organisation on survey); Light of Life Foundation, USA (lead organization on TCA postcard for ITC); Nordisk Thyreoidea Samarbeid, Scandinavia; Ohne Schilddrüse leben e.V., Germany; ThyCa: Thyroid Cancer Survivors’ Association, Inc., USA; Thyroid Cancer Canada/Cancer de la thyroïde Canada, Canada (lead organization on ITC poster development); Vivre sans thyroïde, France

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