br Elsevier Inc All rights reserved br Corresponding author
ª 2019 Elsevier Inc. All rights reserved.
* Corresponding author. Division of Endocrine Surgery, Department of Surgery, University of Wisconsin School of Medicine and Public
Over the last 30 y, the incidence of thyroid cancer has increased faster than other malignancy.1-4 As a result, thyroid cancer is now the most commonly diagnosed cancer in women aged 20 to 34 y.5 Most patients undergo a total thy-roidectomy with or without a neck dissection and radioactive iodine ablation.6,7 These treatments lead to excellent long-term cancer outcomes for the vast majority of patients. As a result, the large pool of 800,000 thyroid cancer survivors continues to grow.8
Despite the effectiveness of treatment and excellent prognosis, thyroid cancer survivors have a reduced quality of life that is similar to or worse than those with more aggressive malignancies, such as breast or colon cancer.
As a consequence, research largely focuses on survivorship. However, similar to those with other cancers, patients with thyroid cancer are known to have significant unmet needs in the preoperative period.12,22-26 An international survey of over 2300 thyroid cancer survivors found that fewer than 10% received psychological support at the time of diagnosis and less than 40% were provided clear written disease- or treatment -related information.26 Nonetheless, little is known about patients’ specific needs and values before surgery.
We undertook this AZD7687 prospective study to better characterize the preoperative experience of patients with thyroid cancer. We used a qualitative approach to rigorously capture an in-depth understanding of what patients need and value in the preoperative period. Assessment of patients’ experiences in a prospective manner was critical to eliminating hindsight bias and reducing the effect of cognitive dissonance. By charac-terizing the experiences of patients’ with thyroid cancer, the results of this study will improve our ability to support these patients and likely those with other malignancies throughout their entire cancer treatment trajectory.
Materials and methods
Design and participant recruitment
We performed semistructured interviews with patients diag-nosed with papillary thyroid cancer who were enrolled in a single-blinded, randomized clinical trial (RCTdClinical Trial Registration Number NCT02138214; https://clinicaltrials.gov/ ct2/show/NCT02138214). The interviews were a planned component of the RCT study design and data collection. The trial randomized patients to receiving or not receiving a pro-phylactic central neck dissection and assessed operative outcomes and patient experiences. We consented patients in clinic after meeting with their surgeon. Patients were eligible to participate if they were 18 y of age or older and had at least one thyroid nodule that measured 1 cm with a cytologic or frozen section diagnosis of papillary thyroid cancer. Partici-pants with lymph node metastases discovered preoperatively or intraoperatively were excluded. The University of Wiscon-sineMadison Health Sciences Institutional Review Board approved this study.
Data collection and analysis
Interviews occurred between May 2014 and April 2016 after patients consulted with the surgeon and consented for the trial, but before surgical intervention and randomization. On average, 17 d elapsed between the time of consent and the interview (range 0-67 d). In most cases, patients consented the same day as their consultation. Trained nonclinical research staff (n ¼ 9) interviewed all trial participants at a time and location convenient for the patient. Interviews lasted on average 1 h (range 45-120 min) and followed a piloted, semi-structured interview guide developed by the principal in-vestigators (R.S.S. and N.P.C.) in conjunction with a qualitative methodologist (C.L.M.). Interviews aimed to understand the preoperative experiences of patients with thyroid cancer. Questions probed about (1) the patient’s diagnosis, (2) their experience with their surgeon, (3) advice they would give to the surgeon after the initial consultation, (4) advice they would give to a newly diagnosed patient, and (5) the effec-tiveness of communication with their care team. At the conclusion of each interview, participants completed a brief demographic survey and received $20. All interviews were transcribed verbatim and deidentified.