What the thyroid cancer patient wants to know: ThyCa survey by the American Head and Neck Society Endocrine Surgery Section.
AHNS
information needs
survey
survivorship
thyroid cancer
Journal
Head & neck
ISSN: 1097-0347
Titre abrégé: Head Neck
Pays: United States
ID NLM: 8902541
Informations de publication
Date de publication:
09 2020
09 2020
Historique:
received:
01
04
2020
accepted:
05
04
2020
pubmed:
13
6
2020
medline:
22
6
2021
entrez:
13
6
2020
Statut:
ppublish
Résumé
To survey a large cohort of thyroid cancer survivors from ThyCa on information needs and expectations of their treatment to better understand the pretreatment counseling, information, and support needs of this population. Anonymous survey of thyroid cancer survivors. One thousand one hundred twenty-four patients with thyroid cancer participated in the survey. Three hundred sixty-two (37.44%) reported not having had a full understanding of their treatment plan and 407 (46.41%) reported that their thyroid cancer treatment did not conform to expectations. Patients diagnosed at younger ages were significantly more likely to report inadequate understanding of the treatment, failure of treatment to meet expectations, and call for greater attention to psychological well-being. Older patients were more likely to report unexpected effects on speech and swallowing. Regardless of age, patients most frequently called for greater attention to management of energy levels (endorsed by 61% of respondents), psychological well-being (50%), and weight changes (48%). Improvements are needed in age-specific communication of thyroid cancer diagnosis and treatment.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
2496-2504Informations de copyright
© 2020 Wiley Periodicals, Inc.
Références
Carling T, Udelsman R. Thyroid cancer. Annu Rev Med. 2014;65:125-137.
Husson O, Haak HR, Oranje WA, Mols F, Reemst PH, van de Poll-Franse LV. Health-related quality of life among thyroid cancer survivors: a systematic review. Clin Endocrinol (Oxf). 2011;75:544-554.
Dow KH, Ferrell BR, Anello C. Balancing demands of cancer surveillance among survivors of thyroid cancer. Cancer Pract. 1997;5:289-295.
Nickel B, Tan T, Cvejic E, et al. Health-related quality of life after diagnosis and treatment of differentiated thyroid cancer and association with type of surgical treatment. JAMA Otolaryngol Head Neck Surg. 2019;145:231-238.
Goldfarb M, Casillas J. Unmet information and support needs in newly diagnosed thyroid cancer: comparison of adolescents/young adults (AYA) and older patients. J Cancer Surviv. 2014;8:394-401.
Goldfarb M, Casillas J. Thyroid cancer-specific quality of life and health-related quality of life in young adult thyroid cancer survivors. Thyroid. 2016;26:923-932.
McIntyre C, Jacques T, Palazzo F, Farnell K, Tolley N. Quality of life in differentiated thyroid cancer. Int J Surg. 2018;50:133-136.
Applewhite MK, James BC, Kaplan SP, et al. Quality of life in thyroid cancer is similar to that of other cancers with worse survival. World J Surg. 2016;40:551-561.
van Velsen EFS, Massolt ET, Heersema H, et al. Longitudinal analysis of quality of life in patients treated for differentiated thyroid cancer. Eur J Endocrinol. 2019;181:671-679.
Ramsey SD, Bansal A, Fedorenko CR, et al. Financial insolvency as a risk factor for early mortality among patients with cancer. J Clin Oncol. 2016;34:980-986.
James BC, Aschebrook-Kilfoy B, White MG, et al. Quality of life in thyroid cancer-assessment of physician perceptions. J Surg Res. 2018;226:94-99.
Snell L, McCarthy C, Klassen A, et al. Clarifying the expectations of patients undergoing implant breast reconstruction: a qualitative study. Plast Reconstr Surg. 2010;126:1825-1830.
Waljee J, McGlinn EP, Sears ED, Chung KC. Patient expectations and patient-reported outcomes in surgery: a systematic review. Surgery. 2014;155:799-808.
Stewart MA. Effective physician-patient communication and health outcomes: a review. CMAJ. 1995;152:1423-1433.
Ong LM, de Haes JC, Hoos AM, Lammes FB. Doctor-patient communication: a review of the literature. Soc Sci Med. 1995;40:903-918.
Trant AA, Szekely B, Mougalian SS, et al. The impact of communication style on patient satisfaction. Breast Cancer Res Treat. 2019;176:349-356.
Dwamena F, Holmes-Rovner M, Gaulden CM, et al. Interventions for providers to promote a patient-centred approach in clinical consultations. Cochrane Database Syst Rev. 2012;12:Cd003267.
Arora NK, Weaver KE, Clayman ML, Oakley-Girvan I, Potosky AL. Physicians' decision-making style and psychosocial outcomes among cancer survivors. Patient Educ Couns. 2009;77:404-412.
DeRouen MC, Smith AW, Tao L, et al. Cancer-related information needs and cancer's impact on control over life influence health-related quality of life among adolescents and young adults with cancer. Psychooncology. 2015;24:1104-1115.
Aschebrook-Kilfoy B, James B, Nagar S, et al. Risk factors for decreased quality of life in thyroid cancer survivors: initial findings from the North American thyroid cancer survivorship study. Thyroid. 2015;25:1313-1321.
Mols F, Schoormans D, JWA S, et al. Age-related differences in health-related quality of life among thyroid cancer survivors compared with a normative sample: results from the PROFILES registry. Head Neck. 2018;40:2235-2245.
Goswami S, Peipert BJ, Mongelli MN, et al. Clinical factors associated with worse quality-of-life scores in United States thyroid cancer survivors. Surgery. 2019;166:69-74.
Banach R, Bartes B, Farnell K, et al. Results of the Thyroid Cancer Alliance international patient/survivor survey: psychosocial/informational support needs, treatment side effects and international differences in care. Hormones (Athens). 2013;12:428-438.
Hyun YG, Alhashemi A, Fazelzad R, Goldberg AS, Goldstein DP, Sawka AM. A systematic review of unmet information and psychosocial support needs of adults diagnosed with thyroid cancer. Thyroid. 2016;26:1239-1250.
Morley S, Goldfarb M. Support needs and survivorship concerns of thyroid cancer patients. Thyroid. 2015;25:649-656.
Duan H, Gamper E, Becherer A, Hoffmann M. Quality of life aspects in the management of thyroid cancer. Oral Oncol. 2015;51:S1-S5.
Rogers SN, Mepani V, Jackson S, Lowe D. Health-related quality of life, fear of recurrence, and emotional distress in patients treated for thyroid cancer. Br J Oral Maxillofac Surg. 2017;55:666-673.
Burgener AM. Enhancing communication to improve patient safety and to increase patient satisfaction. Health Care Manag (Frederick). 2017;36:238-243.
Sahli ZT, Ansari G, Gurakar M, et al. Thyroidectomy in older adults: an American College of Surgeons National Surgical Quality Improvement Program study of outcomes. J Surg Res. 2018;229:20-27.
Sahli Z, Canner JK, Najjar O, et al. Association between age and patient-reported changes in voice and swallowing after thyroidectomy. Laryngoscope. 2019;129:519-524.
Giraldez-Rodriguez LA, Johns M III. Glottal insufficiency with aspiration risk in dysphagia. Otolaryngol Clin North Am. 2013;46:1113-1121.
Sinclair CF, Bumpous JM, Haugen BR, et al. Laryngeal examination in thyroid and parathyroid surgery: an American Head and Neck Society consensus statement: AHNS consensus statement. Head Neck. 2016;38:811-819.
Randle RW, Bushman NM, Orne J, et al. Papillary thyroid cancer: the good and bad of the "good cancer". Thyroid. 2017;27:902-907.
Barbus E, Pestean C, Larg MI, Piciu D. Quality of life in thyroid cancer patients: a literature review. Clujul Med. 2017;90:147-153.
Hughes DT, Reyes-Gastelum D, Kovatch KJ, Hamilton AS, Ward KC, Haymart MR. Energy level and fatigue after surgery for thyroid cancer: a population-based study of patient-reported outcomes. Surgery. 2020;167:102-109.
Lumpkin ST, Stratton L, Strassle PD, Kim LT. Chronic fatigue after thyroidectomy. Paper presented at: American Thyroid Association 2019 Annual Meeting, 2019; Chicago, IL.
Rosato L, Pacini F, Panier Suffat L, et al. Post-thyroidectomy chronic asthenia: self-deception or disease? Endocrine. 2015;48:615-620.
Institute of Medicine Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press; 2001 (US) Copyright 2001 by the National Academy of Sciences. All rights reserved.
Rathert C, Wyrwich MD, Boren SA. Patient-centered care and outcomes: a systematic review of the literature. Med Care Res Rev. 2013;70:351-379.
Stacey D, Legare F, Lewis K, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;4:Cd001431.
Grande GE, Myers LB, Sutton SR. How do patients who participate in cancer support groups differ from those who do not? Psychooncology. 2006;15:321-334.