Abstract
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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
American Cancer Society (2010) Cancer facts & figures 2010. American Cancer Society, Atlanta
Canadian Cancer Society’s Steering Committee (2010) Canadian cancer statistics 2010. Canadian Cancer Society, Toronto
Bain NS, Campbell NC, Ritchie LD, Cassidy J (2002) Striking the right balance in colorectal cancer care—a qualitative study of rural and urban patients. Fam Pract 19(4):369–374
O’Connell JB, Maggard MA, Ko CY (2004) Colon cancer survival rates with the new American joint committee on cancer sixth edition staging. J Natl Cancer Inst 96(19):1420–1425
Fitch M (2000) Supportive care for cancer patients. Hosp Q 3(4):39–46
Harris KA (1998) The informational needs of patients with cancer and their families. Cancer Pract 6(1):39–46
Leino-Kilpi H, Iire L, Suominen T, Vuorenheimo J, Välimäki M (1993) Client and information: a literature review. J Clin Nurs 2(6):331–340
Pigott C, Pollard A, Thomson K, Aranda S (2009) Unmet needs in cancer patients: development of a supportive needs screening tool (SNST). Support Care Cancer 17(1):33–45
Wiljer D, Catton P, Kane G, Leonard K, Neligan D, Schwartz D, et al (2007) The new digital divide: bridging the gap between patients and practice. International Medical Informatics Association (IMIA), Proceedings
Nelson D, Kreps G, Hesse B, Croyle R, Willis G, Arora N et al (2004) The Health Information National Trends Survey (HINTS): development, design, and dissemination. J Health Commun 9(5):443–460
Voogt E, Leeuwen A, Visser A, Heide A, Maas P (2005) Information needs of patients with incurable cancer. Support Care Cancer 13(11):943–948
Roach A, Lykins E, Gochett C, Brechting E, Graue L, Andrykowski M (2009) Differences in cancer information-seeking behavior, preferences, and awareness between cancer survivors and healthy controls: a national, population-based survey. J Cancer Educ 24(1):73–79
Neumann M, Wirtz M, Ernstmann N, Ommen O, Langler A, Edelhauser F et al (2011) Identifying and predicting subgroups of information needs among cancer patients: an initial study using latent class analysis. Support Care Cancer 19(8):1197–1209
Treacy JT, Mayer DK (2000) Perspectives on cancer patient education. Semin Oncol Nurs 16(1):47–56
Benor DE, Delbar V, Krulik T (1998) Measuring impact of nursing intervention on cancer patients’ ability to control symptoms. Cancer Nurs 21(5):320–334
Degner LF, Kristjanson LJ, Bowman D, Sloan JA, Carriere KC, O’Neil J et al (1997) Information needs and decisional preferences in women with breast cancer. JAMA 277(18):1485–1492
Beaver K, Bogg J, Luker KA (1999) Decision-making role preferences and information needs: a comparison of colorectal and breast cancer. Health Expect 2(4):266–276
Sahay TB, Gray RE, Fitch M (2000) A qualitative study of patient perspectives on colorectal cancer. Cancer Pract 8(1):38–44
Nagler R, Romantan A, Kelly B, Stevens R, Gray S, Hull S et al (2010) How do cancer patients navigate the public information environment? Understanding patterns and motivations for movement among information sources. J Cancer Educ 25(3):360–370
Rutten LJF, Arora NK, Bakos AD, Aziz N, Rowland J (2005) Information needs and sources of information among cancer patients: a systematic review of research (1980–2003). Patient Educ Couns 57(3):250–261
Nagler RH, Gray SW, Romantan A, Kelly BJ, DeMichele A, Armstrong K et al (2010) Differences in information seeking among breast, prostate, and colorectal cancer patients: results from a population-based survey. Patient Educ Couns 81(Supplement 1):S54–S62
Acknowledgments
This research was supported by funding from Cancer Care Ontario. The authors gratefully acknowledge the participation of the patients and the contribution of the oncologists and research staff involved in this study at the Juravinski Cancer Centre, the Thunder Bay Regional Cancer Care, and the Princess Margaret Hospital. The opinions, results and conclusions reported in this article are those of the authors and not necessarily those of Cancer Care Ontario.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Wiljer, D., Walton, T., Gilbert, J. et al. Understanding the Needs of Colorectal Cancer Patients during the Pre-diagnosis Phase. J Canc Educ 28, 402–407 (2013). https://doi.org/10.1007/s13187-013-0465-1
Published:
Issue Date:
DOI: https://doi.org/10.1007/s13187-013-0465-1