A Systematic Review of Unmet Information Needs of Adults Diagnosed with Thyroid Cancer

Program: Abstracts - Orals, Poster Previews, and Posters
Session: SAT 270-310-Thyroid Neoplasia (posters)
Saturday, April 2, 2016: 1:15 PM-3:15 PM
Exhibit/Poster Hall (BCEC)

Poster Board SAT 310
Ahmad Alhashemi*1, Yong Gyu Hyun2, Rouhi Fazelzad2, Asima Naeem2, David P. Goldstein3 and Anna M. Sawka3
1University of Toronto, Toronto, ON, Canada, 2University Health Network, Toronto, ON, Canada, 3University Health Network and University of Toronto, Toronto, ON, Canada
Patient education and supportive care are important elements of cancer care.  We systematically reviewed published literature on unmet needs of thyroid cancer patients and survivors, relating to thyroid cancer-related information and psychosocial supportive care.  Only English language quantitative studies reporting on either information or support needs were included.  A librarian information specialist searched 7 electronic databases and a hand-search of relevant cross-references or citations known to coauthors, was conducted. Two reviewers independently screened the citations from the electronic search and reviewed relevant full-text papers. There was consensus on included papers. Two reviewers independently abstracted the included papers.  The main results of review of unmet information needs are herein reported.

We screened 1974 unique electronic citations and reviewed 50 full-text papers. We included 5 cross-sectional, single-arm, patient-directed survey studies, including data from a total of 4984 respondents.  All 5 studies reported on unmet information needs. The respective study sizes ranged from 62 to 2398 thyroid cancer survivors.  Questionnaires were administered as follows, with some studies utilizing more than one method: online – 3 studies, paper-based questionnaire – 3 studies, and in-person interview – 2 studies.  We categorized unmet information needs according to three main categories:  A) thyroid cancer disease-related information, B) treatment-related information, and C) long-term effects of thyroid cancer or its treatment, disease surveillance, or aftercare.  In four studies, the percentage of individuals with one or more specific unmet information need within each respective category ranged as follows: thyroid cancer disease information – 5% to 63%, treatment-related information – 2 to 76%, and long-term effects or aftercare – 45% to 75%.  The information needs were variable for specific topics within categories.  In the fifth study, the degree to which information needs were met were quantified by a score ranging from 1 (the worst) to 5 (the best), and the ranges of means (with standard deviations) was as follows: thyroid cancer information - 2.70 (1.20) to 4.02 (1.18), treatment information - 2.75 (1.19) to 3.97 (0.93), and long-term effects or aftercare – 2.37 (1.10) to 3.60 (1.24).  The heterogeneity of the questionnaires utilized in the various studies precluded pooling the data in a meta-analysis.  In conclusion, many thyroid cancer survivors report unmet information needs relating to various elements of knowledge about their disease, its treatment, or long-term effects and after-care.  More work is needed to improve patient-directed knowledge translation in the field of thyroid cancer.

Nothing to Disclose: AA, YGH, RF, AN, DPG, AMS

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