Thyroid carcinoma is a rare disease. The annual incidence is 1 in 100,000 for males and 3 in 100,000 for females, resulting in approximately 320 new patients each year. The prognosis is relatively favourable, which accounts for the high total prevalence of about 4000 patients in the Netherlands.
The number of new patients with thyroid carcinoma has remained virtually unchanged in the last 10 years. However, given the prolonged survival time of these patients and the ageing of the general population, the prevalence is increasing gradually.
Papillary and follicular carcinomas are the most common types of thyroid carcinoma. These are referred to as differentiated thyroid carcinoma, although it should be noted that some medullary types of thyroid carcinoma are also differentiated. Papillary and follicular carcinomas comprise about 80-90% of all thyroid carcinomas with a ratio of papillary:follicular of 3:1. Based on their unique tumour characteristics, such as the ability to accumulate iodine and produce thyroglobulin, these tumours form a separate subgroup with different treatment and follow-up and are therefore addressed in this guideline. The remaining 10-20%, consisting of medullary and anaplastic thyroid carcinomas, is not discussed in this guideline.
Treatment protocols for differentiated thyroid carcinomas vary widely and, despite the rarity of these tumours, treatment occurs in a large number of centres in the Netherlands. Given the favourable prognosis and low incidence, evidence regarding the clinical efficacy of different treatment protocols is limited and based primarily on observational studies and retrospective analyses.
There is no national registry for patients who have progressive disease despite conventional therapy. In addition, no standard procedure has been developed regarding participation in national or international studies evaluating new therapies.
The first consensus meeting was held in 1987 (Velde 1988), followed by a second meeting in 1998 (De Klerk 1999). This guideline is the first Dutch guideline for thyroid carcinoma that has been developed using the principles of evidence-based medicine (see appendix 5 and appendix 6).
This guideline for the diagnosis, treatment, and follow-up of patients with differentiated (nonmedullary) thyroid carcinoma was developed by the Dutch Society of Nuclear Medicine (Nederlandse Vereniging voor Nucleaire Geneeskunde) and the Dutch Endocrine Society (Nederlandse Vereniging voor Endocrinologie) in cooperation with the Dutch Institute for Healthcare Improvement (Kwaliteitsinstituut voor de Gezondheidszorg CBO) and the Association of Comprehensive Cancer Centres (Vereniging van Integrale Kankercentra).
This guideline was made possible with financial support from the Dutch Society of Medical Specialists (Orde van Medisch Specialisten) as part of the programme for Evidence-Based Guideline Development (EBRO).
Goal This guideline is a document that contains recommendations to aid in daily practice. The guideline is based on the results of scientific research and subsequently expert opinion aimed at establishing good medical practice. What is presented should be generally considered as the best care for patients with thyroid carcinoma. The guideline provides recommendations for diagnosis, treatment, follow-up, counselling, and support of adult men and women with differentiated thyroid carcinoma.
Given the complexity surrounding the diagnosis, treatment, and follow-up of patients with differentiated thyroid carcinoma, recommendations regarding the organisation of care are also given to achieve a high quality of care for these patients in the Netherlands.
The primary goals of this guideline are to improve the following aspects regarding the care of patients with differentiated thyroid carcinoma:
diagnosis, referral, and treatment;
overall and disease-free survival;
quality of life.
Target audience This guideline is meant for all care providers involved in the treatment of patients with differentiated thyroid carcinoma: general practitioners, internist/endocrinologists, surgeons, ear/nose/throat physicians, clinical chemists, internists/oncologists, nuclear medicine physicians, pathologists, radiologists, radiation oncologists, oncology nurses, and social workers.
Description of problem and basis questions The multidisciplinary working group that created the guideline formulated a number of basis questions after various specialists involved in the diagnosis and treatment of differentiated thyroid carcinoma had identified areas of weakness (see appendix 13). These questions refer to identify problems in daily practice in the fields of diagnosis, treatment, and management of patients with differentiated thyroid carcinoma.
The questions include incidence; pathogenesis, symptomatology and factors that may influence further treatment; diagnostic and treatment options, their efficacy, and influence on quality of life. They also address what is desirable at present for the psychosocial care of patients with this type of cancer.
The basis questions form the foundation for the various chapters in this guideline. The guideline does not intend to cover all aspects, but does for the most important aspects of care for differentiated thyroid carcinoma.