Understanding the Needs of Colorectal Cancer Patients during the Pre-diagnosis Phase

• Published in: Journal of cancer education 2013-09, Vol.28 (3), p.402-407
• Main Authors: Wiljer, David, Walton, Tara, Gilbert, Julie, Boucher, Amy, Ellis, Peter M, Schiff, Susan, Sellick, Scott M, Simunovic, Marko, Kennedy, Erin, Urowitz, Sara
• Format: Article
• Language: English
• Subjects: Adult; Anxiety - psychology; Biomedical and Life Sciences; Biomedicine; Cancer; Cancer Research; Colorectal cancer; Colorectal Neoplasms - diagnosis; Colorectal Neoplasms - psychology; Cross-Sectional Studies; Female; Follow-Up Studies; Hospitals; Humans; Information Science; Male; Measurement Techniques; Medical diagnosis; Middle Aged; Needs; Needs Assessment; Oncology; Patient education; Patients; Pharmacology/Toxicology; Prognosis; Psychiatry; Retrospective Studies; Screening Tests; Social support; Surveys and Questionnaires
• ISSN: 0885-8195; 1543-0154
• DOI: 10.1007/s13187-013-0465-1

Patients with colorectal cancer (CRC) face a number of challenges leading up to diagnosis; however, research is limited regarding their specific needs during the pre-diagnosis period. A multicenter cross-sectional survey was conducted to elicit information about the CRC experience during the pre-diagnosis phase. Across the three sites, 104 eligible patients were approached, and 82 patients completed the survey, for a total response rate of 78.9 %. The needs most identified by participants during the pre-diagnosis period were informational (31.6 %) and emotional (20.3 %) needs; social needs were rated as the least important need for these patients (7 %). The majority (84.0 %) reported that these needs were met. Participants reported feeling shocked or overwhelmed on learning of their diagnosis (57.1 %) and high levels of anxiety during this time (40.0 %). The majority (77.9 %) of participants reported that they were not directed to any resources to help address their anxiety. Informational and emotional needs are identified as the most important needs during the pre-diagnosis phase, and for most these needs are being met; however, some participants are experiencing high levels of anxiety without access to appropriate resources. Further work is required to understand the optimal mechanisms to address identified needs during this pre-diagnosis period and to assess the potential benefits and costs of addressing these needs.