Focus on Values to Stimulate Shared Decisions
Focus on Values to Stimulate Shared Decisions
Most patients with non-medullary thyroid carcinoma (TC) achieve remission after primary
 treatment. Nonetheless, 30% develop recurrent disease and/or distant metastases resulting in
 worse survival. Patients with low- and intermediate-risk, whilst having a good prognosis,
 generally undergo similar primary treatment as those with a high-risk disease and face the
 risk of complications and burden of treatment, without a proven benefit in long-term outcome.
 For these patients, current guidelines state that less aggressive treatment (e.g.
 hemi-thyroidectomy vs. total thyroidectomy, and selective use of radioiodine (RAI) therapy),
 and tailored follow-up can be equally acceptable leaving room for patients' preferences. For
 high- risk patients, important unanswered question regard the optimal timing of starting
 tyrosine kinase inhibitors (TKI). For those who are asymptomatic or only mildly symptomatic,
 starting the treatment too early may expose them to side effects and impair quality of life,
 without evidence of a survival benefit.

 Different patients have different views on these decisions, and so do physicians. Therefore,
 care should honour preferences and values of individual patients, and care should involve
 patients through shared decision making (SDM). The principle of SDM is twofold: 1. physicians
 provide patients with information on the existing options, and 2. help patients identify
 their preferences considering their individual values and needs. This involves important life
 values, for instance the desire to do everything possible, or to minimise complaints.

 Addressing patients' treatment-related values is arguably the most difficult part of SDM so
 patient values are less likely to be discussed and honoured in a consultation. Current tools
 improve values deliberation but their effects are clearly insufficient. Tools should be
 integrated and applied in consultations to increase effectiveness. To strengthen values
 deliberation with TC as an example, a multifaceted intervention, COMBO, is proposed including
 1) a patient values clarification exercise, named SDM-booster, 2) a physician values
 deliberation training using the SDM-booster, and 3) a patient decision aid. The SDM-booster
 strengthens values deliberation by 1) strengthening and clarifying patients' values and
 preferences, 2) communicating patients' values in the consultation, 3) serving as a focus in
 the values deliberation training.
Decision 1: total thyroidectomy vs. hemithyroidectomy:

 Inclusion Criteria:

 -  patients with nodules >1 cm and <4 cm, with cytology result suspicious or malignant
 (Bethesda 5 or 6) with no clinical or radiological evidence of pathological lymph
 nodes and/or distant metastases before the primary (diagnostic) surgery

 -  patients with histologically (after diagnostic hemithyroidectomy) proven TC but are
 defined as low-risk according to the ATA classification.

 Exclusion criteria:

 -  patients with multifocal TC

 -  patients with incomplete resection of the primary tumor

 -  patients with ATA defined intermediate risk or high risk

 Decision 2: no treatment with RAI vs. treatment with RAI:

 Inclusion criteria:

 • patients with ATA defined low-risk and patients with multifocal papillary TC in the
 absence of other adverse features

 Exclusion criteria:

 • patients with ATA defined intermediate and high risk

 Decision 3: active surveillance vs. systemic treatment

 Inclusion criteria:

 • patients with asymptomatic or mildly symptomatic RAI-refractory (slowly) progressive
 metastatic disease

 Exclusion criteria:

 • patients with coexisting conditions that do not allow prescription of TKI's

 Other exclusion Criteria:

 -  lack of Dutch language proficiency

 -  mental incompetence hampering the process of shared decision making as judged by the
 physician