How can we meet the information needs of patients with early stage papillary thyroid cancer considering radioactive iodine remnant ablation?

Abstract

In patients with early stage papillary thyroid carcinoma (PTC) who have had a thyroidectomy, the decision must be made to accept or reject radioactive iodine remnant ablation (RRA). Counselling patients about this decision can be challenging, given the medical evidence uncertainties and the complexity of related information. Although physicians are the primary source of medical information for patients considering RRA, some patients have a desire for supplemental information from sources such as the internet. Yet, thyroid cancer resources on the internet are of variable quality, and some may not be applicable to the individual case. We have developed a computerized educational tool [called a decision aid (DA)], directed to patients with early stage papillary thyroid cancer, and intended as an adjunct to physician counselling, to relay evidence-based medical information on disease prognosis and the choice to accept or reject RRA. DAs are tools used to inform patients about available treatment options and have been utilized in oncologic decision-making. We tested our web-based DA in fifty patients with early stage PTC and found that it improved medical knowledge. Furthermore, participants found the technical usability of the tool acceptable. We are currently conducting a randomized controlled trial comparing the use of the DA plus usual care to usual care alone to confirm the educational benefit of the website and examine its impact on the decision-making process. In the future, DAs may play an expanded role as an adjunct to physician counselling in the care of patients with thyroid cancer.

Thyroid cancer patient perceptions of radioactive iodine treatment choice: Follow‐up from a decision‐aid randomized trial

“…An important component of our P-DA is that it provides an explicit explanation of evidence uncertainty related to the potential therapeutic benefit of RAI for long-term cancer outcomes (ie, thyroid cancer-related mortality and recurrence). [5][6][7][8][9][10] In an RCT of patients with early-stage thyroid cancer, compared with usual care, our P-DA significantly increased patients' medical knowledge and reduced decisional conflict at the time of RAI treatment decision making. 9 However, the longer term effects of this and other decision P-DAs are not well understood because P-DA trials typically do not follow patients far beyond the period of decision making.…”

“…RAI remnant ablation after total thyroidectomy may facilitate thyroid cancer disease surveillance, but its long‐term cancer outcome benefits are unclear because of a lack of long‐term RCTs and conflicting observational evidence. An important component of our P‐DA is that it provides an explicit explanation of evidence uncertainty related to the potential therapeutic benefit of RAI for long‐term cancer outcomes (ie, thyroid cancer–related mortality and recurrence) . In an RCT of patients with early‐stage thyroid cancer, compared with usual care, our P‐DA significantly increased patients’ medical knowledge and reduced decisional conflict at the time of RAI treatment decision making .…”

“…We recently developed and tested a patient-directed computerized decision aid for thyroid cancer (patient decision aid [P-DA]), to be used as an adjunct to physician counseling, in explaining the risks, benefits, evidence uncertainties, and implications of the decision to accept or reject postsurgical RAI treatment (also known as RAI remnant ablation) for early-stage papillary thyroid cancer. [5][6][7][8][9][10] RAI remnant ablation after total thyroidectomy may facilitate thyroid cancer disease surveillance, but its long-term cancer outcome benefits are unclear because of a lack of long-term RCTs and conflicting observational evidence. An important component of our P-DA is that it provides an explicit explanation of evidence uncertainty related to the potential therapeutic benefit of RAI for long-term cancer outcomes (ie, thyroid cancer-related mortality and recurrence).…”

Psychosocial Factors in Patients with Thyroid Disease

“…Roberts et al (2008) surveyed which information would be necessary for the patients with the carcinoma. Sawka et al (2011) have developed a computerized educational tool (called a decision aid) to inform patients about available treatment options and have been utilized in oncologic decision-making. Huang et al (2004) rightfully assume that a big potential is hidden in nurses' care (comp.…”

Integration of advances in social media and mHealth technology are pivotal to successful cancer prevention and control

“…Microblogging networks such as Twitter ® and social networks like Facebook ® allow patients to access information regarding cancer treatment and preventative measures to reduce the risk of developing cancer (11,12). Mobile health (mHealth), the practice of medicine and public health supported by mobile devices, is now available in many formats and is proving to be valuable in the prevention and control of cancer (13).…”