As cancer survivors live longer, and as awareness continues to grow of the potential risks for lingering and late-occurring adverse effects of cancer and its treatment, attention is shifting to the need for a better understanding of the medical follow-up care received by long-term survivors. The Follow-up Care Use Among Survivors (FOCUS) survey was initiated to address this gap in our knowledge and to help identify areas where improvements are needed in quality of post-treatment care. The questionnaire was specifically designed to better understand the frequency, content, setting, and perceived quality and purpose of follow-up care received by long-term cancer survivors; to document the prevalence of late and long-term effects of cancer and its treatment; to examine survivors’ knowledge of potential late and long-term effects of cancer treatment; and to study health-related quality of life and health behaviors in those surviving long term.
Between March 2005 and July 2006, researchers mailed the FOCUS survey to survivors of breast, colorectal, prostate, endometrial, or ovarian cancer randomly selected from the Los Angeles and Northern California Surveillance, Epidemiology and End Results (SEER) registries. The sample was stratified based on five variables: 1) cancer site (breast, colorectum, endometrium, ovary, and prostate); 2) time since diagnosis (4–9 years and 10–14 years) at the time the study was implemented in 2005; 3) age at diagnosis (21–64 and 65–79); 4) gender (male, female) for colorectal only, and; 5) race (non-Hispanic White, African-American, Hispanic and Asian). Over 1,600 survivors completed the questionnaire.
The FOCUS survey was funded by the National Cancer Institute and was conducted by the Los Angeles County Cancer Surveillance Program and the Northern California Cancer Center as part of the SEER Rapid Response Surveillance Study contract mechanism.
Researchers are now analyzing the results of another survey that focuses on follow-up care of survivors, the Survey of Physician Attitudes Regarding the Care of Cancer Survivors (SPARCCS). For more information regarding SPARCCS, please go to https://healthcaredelivery.cancer.gov/sparccs/.
Obtain the Survey
The FOCUS survey (PDF 1.4 MB) is available as a PDF. Please acknowledge the National Cancer Institute Follow-up Care Use Among Survivors (FOCUS) survey if you use any FOCUS questionnaire items in your research.
Palmer NR, Kent EE, Forsythe LP, Arora NK, Rowland JH, Aziz NM, Blanch-Hartigan D, Oakley-Girvan I, Hamilton AS, Weaver KE. Racial and ethnic disparities in patient-provider communication, quality-of-care ratings, and patient activation among long-term cancer survivors. J Clin Oncol. 2014 Dec 20;32(36):4087-94. doi: 10.1200/JCO.2014.55.5060. Epub 2014 Nov 17. PubMed PMID: 25403220; PubMed Central PMCID: PMC4265119.
Leach CR, Weaver KE, Aziz NM, Alfano CM, Bellizzi KM, Kent EE, Forsythe LP, Rowland JH. The complex health profile of long-term cancer survivors: prevalence and predictors of comorbid conditions. J Cancer Surviv. 2015 Jun;9(2):239-51. doi: 10.1007/s11764-014-0403-1. Epub 2014 Oct 16. PubMed PMID: 25319681.
Forsythe LP, Alfano CM, Kent EE, Weaver KE, Bellizzi K, Arora N, Aziz N, Keel G, Rowland JH. Social support, self-efficacy for decision-making, and follow-up care use in long-term cancer survivors. Psychooncology. 2014 Jul;23(7):788-96. doi: 10.1002/pon.3480. Epub 2014 Jan 30. PubMed PMID: 24481884; PubMed Central PMCID: PMC4082440.
Sohl SJ, Weaver KE, Birdee G, Kent EE, Danhauer SC, Hamilton AS. Characteristics associated with the use of complementary health approaches among long-term cancer survivors. Support Care Cancer. 2014 Apr;22(4):927-36. doi: 10.1007/s00520-013-2040-z. Epub 2013 Nov 22. PubMed PMID: 24263621; PubMed Central PMCID: PMC3943706.
Weaver KE, Aziz NM, Arora NK, Forsythe LP, Hamilton AS, Oakley-Girvan I, Keel G, Bellizzi KM, Rowland JH. Follow-up care experiences and perceived quality of care among long-term survivors of breast, prostate, colorectal, and gynecologic cancers. J Oncol Pract. 2014 Jul;10(4):e231-9. doi: 10.1200/JOP.2013.001175. Epub 2014 Apr 1. PubMed PMID: 24695901; PubMed Central PMCID: PMC4094647.
Bellizzi, K. M., Aziz, N. M., Rowland, J. H., Weaver, K., Arora, N. K., Hamilton, A. S., et al. (2012). Double Jeopardy? Age, Race, and HRQOL in Older Adults with Cancer. J Cancer Epidemiol, 2012, 478642.
Kent, E. E., Arora, N. K., Rowland, J. H., Bellizzi, K. M., Forsythe, L. P., Hamilton, A. S., et al. (2012). Health information needs and health-related quality of life in a diverse population of long-term cancer survivors. Patient Educ Couns, 89(2), 345-352.
Weaver, K. E., Foraker, R. E., Alfano, C. M., Rowland, J. H., Arora, N. K., Bellizzi, K. M., et al. (2013). Cardiovascular risk factors among long-term survivors of breast, prostate, colorectal, and gynecologic cancers: a gap in survivorship care? J Cancer Surviv, 7(2), 253-261.