Abstract
Dear Editor:
In a recent issue of Thyroid, Morley and Goldfarb reported that in an online survey of thyroid cancer survivors, fewer than half of participants indicated that they had ever received information on long-term and health effects or any psychological/emotional concerns or practical matters relating to thyroid cancer and its treatment (1). Morley and Goldfarb concluded that the majority of information needs of thyroid cancer survivors are unmet (1). It is important to confirm this serious knowledge translation gap. We thus explored the current information needs of a sample of treated low-risk thyroid cancer survivors.
Methods
We have followed a cohort of individuals diagnosed with low-risk papillary thyroid cancer (as defined by the American Thyroid Association) as part of a computerized decision aid trial (i.e., decision aid on radioactive iodine remnant ablation) (2,3), and we contacted the participants two or more years following enrollment in order to explore their current information needs. The clinicopathological features, disease status, and treatment characteristics of our study population have been confirmed by review of relevant medical records (2,3). Only the individuals in the decision aid intervention arm were exposed to a one-time viewing of a decision aid at the time of randomization, with no further provision of knowledge translation interventions (2,3). We utilized the information needs questionnaire from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) survey (4), with permission of the AYA HOPE investigators (4). The study was approved by the University Health Network Research Ethics Board. We telephoned the study participants two or more years after their inclusion in our trial for permission to participate in this follow-up study. The questionnaire was administered to consenting participants over the telephone, and it was scored as per the developers (4).
Results
Approximately 77% of the trial participants (57/74) responded to this survey. The time since primary thyroid cancer treatment was a mean of 35 months (range 29–45 months), and most participants were female (86%, 49/57). The mean age at thyroid cancer diagnosis was 46 years (range 19–79 years). All patients had a total thyroidectomy, and 28% (16/57) received radioactive iodine remnant ablation (28%, 16/57). Most participants were well educated (91%, 52/57, had college education or higher) and married/common-law (70%, 40/52). Two individuals (4%) had undergone neck reoperation, one for nodal recurrence and another for a benign thyroglossal cyst. The unmet information needs are shown in Table 1. More than half of participants reported an unmet information need relating to thyroid cancer treatment, including treatment side effects, newer treatments, and complementary or alternative therapies. Between about a quarter to just under half of participants reported unmet needs relating to monitoring for disease recurrence, non-thyroidal malignancy risk (in oneself or family), lifestyle, and financial assistance with medical care.
The questions are from the Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) survey (4).
The unmet information percentage is calculated by the number of individuals indicating that they needed “some more” or “much more information” divided by the total number of respondents (N = 57).
“Does not apply” refers to the percentage of individuals indicating that the information need did not apply to them (percentage is calculated by dividing by the total number of respondents, i.e., 57).
Of the six individuals who indicated an unmet need relating to having children in the future, four (67%) did not have children at the time of the survey, and two (33%) reported having children at the time of the survey.
Discussion
In conclusion, our findings generally confirm those of Morley and Goldfarb (1), suggesting that in our sample of low-risk papillary thyroid cancer survivors, a substantial patient knowledge gap exists. A limitation in generalizing our study results to other populations is that our participants received care from thyroid cancer specialists and may have received more than standard medical information by virtue of being previously enrolled in a knowledge translation study. Thus, unmet needs may be greater in some other thyroid cancer populations or practice settings. Yet, our findings highlight the need for more patient-directed knowledge translation research in the field of thyroid cancer.
Footnotes
Acknowledgments
Financial support this study was provided by an operating grant from the University Health Network Thyroid Endowment Fund and individual donations from a Thyroid Cancer Research fund, with no industry support. During this study, A.M.S. was supported by a Health Services Research Chair from Cancer Care Ontario (funded by the Ontario Ministry of Health and Long-term Care), and she now receives support from a University of Toronto Department of Medicine Clinician Scientist Merit Award. The assistance of the following individuals is also acknowledged in this study: Asima Naeem, Nabeel Pervaiz Munir, and Coreen Marino.