A Telephone Helpline Assessment of Psychosocial Needs of Adults with Cancer Post Institute of Medicine (IOM) Recommendations
Affiliation(s)
1 School of Nursing, University of Delaware, Newark, USA. 2 Christiana Care Center for Outcomes Research (CCOR) Value Institute, Christiana Care Health System, Newark, USA.
1 School of Nursing, University of Delaware, Newark, USA. 2 Christiana Care Center for Outcomes Research (CCOR) Value Institute, Christiana Care Health System, Newark, USA.
ABSTRACT
Objective: To explore whether the 2007 IOM recommendations had an impact on the reasons for calls to a cancer telephone helpline and determine the major reasons for calls at two different time periods after the 2007 recommendations. Methods: Caller data with identifiers removed were extracted from a cancer helpline database. Baseline data included calls made to the helpline between April 2, 2008 and September 2, 2009 (Period 1). Then, a second data set was built from data collected between September 3, 2009 and May 2, 2011 (Period 2). Results: The major reasons for calls to the cancer telephone helpline during the two different time periods were the same: financial assistance, helpline services information, coping assistance, support groups, and questions related to treatment. Four of the top five reasons were non-treatment related (i.e., financial issues, helpline services information, coping, and support). Conclusions: The nature of calls to the helpline suggests that the financial and psychosocial needs of people with cancer are not being addressed by healthcare providers. Practice implications: The new “normal” for cancer care includes decisions about complex care coupled with new regulatory and financial constraints. This underscores the importance of focused planning of cancer care across multiple care settings in order to ensure continuity of care for the whole person.
Objective: To explore whether the 2007 IOM recommendations had an impact on the reasons for calls to a cancer telephone helpline and determine the major reasons for calls at two different time periods after the 2007 recommendations. Methods: Caller data with identifiers removed were extracted from a cancer helpline database. Baseline data included calls made to the helpline between April 2, 2008 and September 2, 2009 (Period 1). Then, a second data set was built from data collected between September 3, 2009 and May 2, 2011 (Period 2). Results: The major reasons for calls to the cancer telephone helpline during the two different time periods were the same: financial assistance, helpline services information, coping assistance, support groups, and questions related to treatment. Four of the top five reasons were non-treatment related (i.e., financial issues, helpline services information, coping, and support). Conclusions: The nature of calls to the helpline suggests that the financial and psychosocial needs of people with cancer are not being addressed by healthcare providers. Practice implications: The new “normal” for cancer care includes decisions about complex care coupled with new regulatory and financial constraints. This underscores the importance of focused planning of cancer care across multiple care settings in order to ensure continuity of care for the whole person.
Cite this paper
Klemm, P. , Rempusheski, V. , Jurkovitz, C. , Kolm, P. and Zhang, W. (2014) A Telephone Helpline Assessment of Psychosocial Needs of Adults with Cancer Post Institute of Medicine (IOM) Recommendations. Open Journal of Nursing, 4, 797-807. doi: 10.4236/ojn.2014.411085.
Klemm, P. , Rempusheski, V. , Jurkovitz, C. , Kolm, P. and Zhang, W. (2014) A Telephone Helpline Assessment of Psychosocial Needs of Adults with Cancer Post Institute of Medicine (IOM) Recommendations. Open Journal of Nursing, 4, 797-807. doi: 10.4236/ojn.2014.411085.
References
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http://dx.doi.org/10.1300/J077v26n02_01 [7] Puts, M., et al. (2012) A Systematic Review of Unmet Needs of Newly Diagnosed Older Cancer Patients Undergoing Active Cancer Treatment. Supportive Care in Cancer, 20, 1377-1394. [8] Posma, E., van Weert, J.C.M., Jansen, J. and Bensing, J.M. (2009) Older Cancer Patients’ Information and Support Needs Surrounding Treatment: An Evaluation through the Eyes of Patients, Relatives, and Professionals. BMC Nursing, 8, 1.
http://dx.doi.org/10.1186/1472-6955-8-1 [9] (2007) Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.
http://www.iom.edu/Reports/2007/Cancer-Care-for-the-Whole-Patient-Meeting-Psychosocial-Health-Needs.aspx [10] (2013) NCCN Guidelines.
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp [11] (2013) Cancer Program Standards 2012, Version 1.2: Ensuring Patient-Centered Care.
http://www.facs.org/cancer/coc/programstandards2012.html [12] Marcusen, C. (2010) Information and Communication Needs of Individuals Living with Advanced Cancer. Seminars in Oncology Nursing, 26, 151-156.
http://dx.doi.org/10.1016/j.soncn.2010.05.006 [13] Im, E.O., Chee, W., Guevara, E., Lim, H.J., Liu, Y. and Shin, H. (2008) Gender and Ethnic Differences in Cancer Patients’ Needs for Help: An Internet Survey. International Journal of Nursing Studies, 45, 1192-1204.
http://dx.doi.org/10.1016/j.ijnurstu.2007.09.006 [14] Klemm, P. (2008) Late Effects of Treatment for Long-Term Cancer Survivors: Qualitative Analysis of an Online Support Group. CIN: Computers, Informatics, Nursing, 26, 49-58.
http://dx.doi.org/10.1097/01.NCN.0000304753.41493.f4 [15] Fox, S. and Purcell, K. (2010) Chronic Disease and the Internet.
http://www.pewinternet.org/2010/03/24/chronic-disease-and-the-internet/ [16] Amalraj, S., Starkweather, C., Nguyen, C. and Naeim, A. (2009) Health Literacy, Communication, and Treatment Decision-Making in Older Cancer Patients. Oncology, 23, 369-375. [17] Paul, C., Carey, M.L., Hall, A.E., Lynagh, M.C., Sanson-Fisher, R.W. and Henskens, F.A. (2011) Improving Access to Information and Support for Patients with Less Common Cancers: Hematologic Cancer Patients’ Views about Web-Based Approaches. Journal of Medical Internet Research, 13, e112.
http://dx.doi.org/10.2196/jmir.1894 [18] Jefford, M., Black, C., Grogan, S., Yeoman, G., White, V. and Akkerman, D. (2005) Information and Support Needs of Callers to the Cancer Helpline, the Cancer Council Victoria. European Journal of Cancer Care, 14, 113-123.
http://dx.doi.org/10.1111/j.1365-2354.2005.00505.x [19] Carlsson, M. (2009) Cancer Patients Seeking Information from Sources Outside the Health Care System: Change over a Decade. European Journal of Oncology Nursing, 13, 304-305.
http://dx.doi.org/10.1016/j.ejon.2009.03.005 [20] Mayer, D., Terrin, N.C., Kreps, G.L., Menon, U., McCance, K., Parsons, S.K., et al. (2007) Cancer Survivors Information Seeking Behaviors: A Comparison of Survivors Who Do and Do Not Seek Information about Cancer. Patient Education and Counseling, 65, 342-350.
http://dx.doi.org/10.1016/j.pec.2006.08.015 [21] Reid, J. and Porter, S. (2011) Utility, Caller, and Patient Profile of a Novel Chemotherapy Telephone Helpline Service within a Regional Cancer Centre in Northern Ireland. Cancer Nursing, 34, E27-E32.
http://dx.doi.org/10.1097/NCC.0b013e318204c53c [22] Carlsson, M., Strang, P. and Lindblad, L. (1996) Telephone Help Line for Cancer Counceling and Cancer Information. Cancer Practice, 4, 319-323. [23] Marcus, A., Garrett, K.M., Kulchak-Rahm, A., Barnes, D., Dortch, W. and Juno, S. (2002) Telephone Counseling in Psychosocial Oncology: A Report from the Cancer Information and Counseling Line. Patient Education & Counseling, 46, 267-275.
http://dx.doi.org/10.1016/S0738-3991(01)00163-X [24] Rainey, L. (1985) Cancer Counseling by Telephone Help-Line: The UCLA Psychosocial Cancer Counseling Line. Public Health Reports, 100, 308-315. [25] Morra, M.E., Vevel, J., Nealon, E.O., Mazan, K.D. and Thomsen, C. (1993) History of the Cancer Information Service. Journal of the National Cancer Institute, 7-33. [26] Carlsson, M. (2000) Cancer Patients Seeking Information from Sources Outside the Health Care System. Supportive Care in Cancer, 8, 453-457. [27] NCI’s Cancer Information Service (CIS) (2012) http://www.cancer.gov/aboutnci/cis/page1 [28] Bernard, D., Farr, S. and Fang, Z. (2011) National Estimates of Out-of-Pocket Health Care Expenditure Burdens among Nonelderly Adults with Cancer: 2001 to 2008. Journal of Clinical Oncology, 29, 2821-2826.
http://dx.doi.org/10.1200/JCO.2010.33.0522 [29] Cunningham, P. (2009) Chronic Burdens: The Persistently High Out-of-Pocket Healthcare Expenses Faced by Many Americans with Chronic Conditions.
http://www.commonwealthfund.org/~/media/Files/Publications/Issue%20Brief/2009/Jul/Chronic%20
Burdens/1303_Cunningham_chronic_burdens_high_OOP_expenses_chronic_conditions_ib.pdf [30] Desmond, K., et al. (2007) The Burden of Out-of-Pocket Health Spending among Older versus Younger Adults: Analysis from the Consumer Analysis Survey, 1998-2003. The Henry J. Kaiser Family Foundation. [31] Finkelstein, E., et al. (2009) The Personal Financial Burden of Cancer for the Working-Aged Population. American Journal of Managed Care, 15, 801-806. [32] Jayadevappa, R., Schwartz, J.S., Chhatre, S., Gallo, J.J., Wein, A.J. and Malkowicz, S.B. (2010) The Burden of Out-of-Pocket and Indirect Costs of Prostate Cancer. The Prostate, 70, 1255-1264.
http://dx.doi.org/10.1002/pros.21161 [33] Pisu, M., Azuero, A., McNees, P., Burkhardt, J., Benz, R. and Meneses, K. (2010) The Out of Pocket Cost of Breast Cancer Survivors: A Review. Journal of Cancer Survivorship, 4, 202-209.
http://dx.doi.org/10.1007/s11764-010-0125-y [34] Yabroff, K., Lund, J., Kepka, D. and Mariotto, A. (2011) Economic Burden of Cancer in the United States: Estimates, Projections, and Future Research. Cancer Epidemiology Biomarkers & Prevention, 20, 2006-2014.
http://dx.doi.org/10.1158/1055-9965.EPI-11-0650 [35] Mathews, M. and Park, A. (2009) Identifying Patients in Financial Need: Cancer Care Providers’ Perceptions of Barriers. Clinical Journal of Oncology Nursing, 13, 501-505.
http://dx.doi.org/10.1188/09.CJON.501-505 [36] Yabroff, K., Lamont, E.B., Mariotto, A., Warren, J.L., Topor, M., Meekins, A., et al. (2008) Cost of Care for Elderly Cancer Patients in the United States. Journal of the National Cancer Institute, 100, 630-641.
http://dx.doi.org/10.1093/jnci/djn103 [37] Salz, R., Oeffinger, K.C., McCabe, M.S., Layne, T.M., and Bach, P.B. (2012) Survivorship Care Plans in Research and Practice. CA: A Cancer Journal for Clinicians, 62, 101-117.
http://dx.doi.org/10.3322/caac.20142 [38] Hewitt, M., Greenfield, S. and Stovall, E. (2005) From Cancer Patient to Cancer Survivor: Lost in Transition. Institute of Medicine and National Research Council of the National Academies, Washington DC. [39] (2008) GACHA Annual Report 2008: Delaware Governor’s Advisory Council on Hispanic Affairs. Delaware Health and Social Services, New Castle. [40] Ennis, S., Rios-Vargas, M. and Albert, N. (2011) The Hispanic Population: 2010. US Census Bureau. [41] (2012) Cancer Facts and Figures for Latinos/Hispanics 2012-2014. American Cancer Society, Atlanta. [42] Waters, E., Sullivan, H. and Rutten, L.F. (2009) Cancer Prevention Information-Seeking among Hispanic and Non Hispanic Users of the National Cancer Institute’s Cancer Information Service: Trends in Telephone and Live-Help Use. Journal of Health Communication: International Perspectives, 14, 476-486.
http://dx.doi.org/10.1080/10810730903032952 [43] McCormack, L., et al. (2013) Communication and Dissemination Strategies to Facilitate the Use of Health-Related Evidence. Evidence Report/Technology Assessment No. 213, Rockville.
[1] American Cancer Society (2014) Treatment and Survivorship Research.
http://www.cancer.org/research/survivaltreatmentresearch/index [2] American Cancer Society (2013) Cancer Facts & Figures 2013. American Cancer Society, Atlanta. [3] Eheman, C., Berkowitz, Z., Lee, J., Mohile, S., Purnell, J., Rodriguez, E.M., et al. (2009) Information-Seeking Styles among Cancer Patients before and after Treatment by Demographics and Use of Information Sources. Journal of Health Communication: International Perspectives, 14, 487-502.
http://dx.doi.org/10.1080/10810730903032945 [4] Walsh, M., Trentham-Dietz, A., Schroepfer, T.A., Reding, D.J., Campbell, B., Foote, M.L., et al. (2010) Cancer Information Sources Used by Patients to Inform and Influence Treatment Decisions. Journal of Health Communication: International Perspectives, 15, 445-463.
http://dx.doi.org/10.1080/10810731003753109 [5] Adler, N. and Page, A. (2008) Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. The National Academies Press, Washington DC. [6] Hawkins, N., Pollack, L.A., Leadbetter, S., Steele, W.R., Carroll, J., Dolan, J.G., et al. (2008) Informational Needs of Patients and Perceived Adequacy of Information Available before and after Treatment of Cancer. Journal of Psychosocial Oncology, 26, 1-16.
http://dx.doi.org/10.1300/J077v26n02_01 [7] Puts, M., et al. (2012) A Systematic Review of Unmet Needs of Newly Diagnosed Older Cancer Patients Undergoing Active Cancer Treatment. Supportive Care in Cancer, 20, 1377-1394. [8] Posma, E., van Weert, J.C.M., Jansen, J. and Bensing, J.M. (2009) Older Cancer Patients’ Information and Support Needs Surrounding Treatment: An Evaluation through the Eyes of Patients, Relatives, and Professionals. BMC Nursing, 8, 1.
http://dx.doi.org/10.1186/1472-6955-8-1 [9] (2007) Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.
http://www.iom.edu/Reports/2007/Cancer-Care-for-the-Whole-Patient-Meeting-Psychosocial-Health-Needs.aspx [10] (2013) NCCN Guidelines.
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp [11] (2013) Cancer Program Standards 2012, Version 1.2: Ensuring Patient-Centered Care.
http://www.facs.org/cancer/coc/programstandards2012.html [12] Marcusen, C. (2010) Information and Communication Needs of Individuals Living with Advanced Cancer. Seminars in Oncology Nursing, 26, 151-156.
http://dx.doi.org/10.1016/j.soncn.2010.05.006 [13] Im, E.O., Chee, W., Guevara, E., Lim, H.J., Liu, Y. and Shin, H. (2008) Gender and Ethnic Differences in Cancer Patients’ Needs for Help: An Internet Survey. International Journal of Nursing Studies, 45, 1192-1204.
http://dx.doi.org/10.1016/j.ijnurstu.2007.09.006 [14] Klemm, P. (2008) Late Effects of Treatment for Long-Term Cancer Survivors: Qualitative Analysis of an Online Support Group. CIN: Computers, Informatics, Nursing, 26, 49-58.
http://dx.doi.org/10.1097/01.NCN.0000304753.41493.f4 [15] Fox, S. and Purcell, K. (2010) Chronic Disease and the Internet.
http://www.pewinternet.org/2010/03/24/chronic-disease-and-the-internet/ [16] Amalraj, S., Starkweather, C., Nguyen, C. and Naeim, A. (2009) Health Literacy, Communication, and Treatment Decision-Making in Older Cancer Patients. Oncology, 23, 369-375. [17] Paul, C., Carey, M.L., Hall, A.E., Lynagh, M.C., Sanson-Fisher, R.W. and Henskens, F.A. (2011) Improving Access to Information and Support for Patients with Less Common Cancers: Hematologic Cancer Patients’ Views about Web-Based Approaches. Journal of Medical Internet Research, 13, e112.
http://dx.doi.org/10.2196/jmir.1894 [18] Jefford, M., Black, C., Grogan, S., Yeoman, G., White, V. and Akkerman, D. (2005) Information and Support Needs of Callers to the Cancer Helpline, the Cancer Council Victoria. European Journal of Cancer Care, 14, 113-123.
http://dx.doi.org/10.1111/j.1365-2354.2005.00505.x [19] Carlsson, M. (2009) Cancer Patients Seeking Information from Sources Outside the Health Care System: Change over a Decade. European Journal of Oncology Nursing, 13, 304-305.
http://dx.doi.org/10.1016/j.ejon.2009.03.005 [20] Mayer, D., Terrin, N.C., Kreps, G.L., Menon, U., McCance, K., Parsons, S.K., et al. (2007) Cancer Survivors Information Seeking Behaviors: A Comparison of Survivors Who Do and Do Not Seek Information about Cancer. Patient Education and Counseling, 65, 342-350.
http://dx.doi.org/10.1016/j.pec.2006.08.015 [21] Reid, J. and Porter, S. (2011) Utility, Caller, and Patient Profile of a Novel Chemotherapy Telephone Helpline Service within a Regional Cancer Centre in Northern Ireland. Cancer Nursing, 34, E27-E32.
http://dx.doi.org/10.1097/NCC.0b013e318204c53c [22] Carlsson, M., Strang, P. and Lindblad, L. (1996) Telephone Help Line for Cancer Counceling and Cancer Information. Cancer Practice, 4, 319-323. [23] Marcus, A., Garrett, K.M., Kulchak-Rahm, A., Barnes, D., Dortch, W. and Juno, S. (2002) Telephone Counseling in Psychosocial Oncology: A Report from the Cancer Information and Counseling Line. Patient Education & Counseling, 46, 267-275.
http://dx.doi.org/10.1016/S0738-3991(01)00163-X [24] Rainey, L. (1985) Cancer Counseling by Telephone Help-Line: The UCLA Psychosocial Cancer Counseling Line. Public Health Reports, 100, 308-315. [25] Morra, M.E., Vevel, J., Nealon, E.O., Mazan, K.D. and Thomsen, C. (1993) History of the Cancer Information Service. Journal of the National Cancer Institute, 7-33. [26] Carlsson, M. (2000) Cancer Patients Seeking Information from Sources Outside the Health Care System. Supportive Care in Cancer, 8, 453-457. [27] NCI’s Cancer Information Service (CIS) (2012) http://www.cancer.gov/aboutnci/cis/page1 [28] Bernard, D., Farr, S. and Fang, Z. (2011) National Estimates of Out-of-Pocket Health Care Expenditure Burdens among Nonelderly Adults with Cancer: 2001 to 2008. Journal of Clinical Oncology, 29, 2821-2826.
http://dx.doi.org/10.1200/JCO.2010.33.0522 [29] Cunningham, P. (2009) Chronic Burdens: The Persistently High Out-of-Pocket Healthcare Expenses Faced by Many Americans with Chronic Conditions.
http://www.commonwealthfund.org/~/media/Files/Publications/Issue%20Brief/2009/Jul/Chronic%20
Burdens/1303_Cunningham_chronic_burdens_high_OOP_expenses_chronic_conditions_ib.pdf [30] Desmond, K., et al. (2007) The Burden of Out-of-Pocket Health Spending among Older versus Younger Adults: Analysis from the Consumer Analysis Survey, 1998-2003. The Henry J. Kaiser Family Foundation. [31] Finkelstein, E., et al. (2009) The Personal Financial Burden of Cancer for the Working-Aged Population. American Journal of Managed Care, 15, 801-806. [32] Jayadevappa, R., Schwartz, J.S., Chhatre, S., Gallo, J.J., Wein, A.J. and Malkowicz, S.B. (2010) The Burden of Out-of-Pocket and Indirect Costs of Prostate Cancer. The Prostate, 70, 1255-1264.
http://dx.doi.org/10.1002/pros.21161 [33] Pisu, M., Azuero, A., McNees, P., Burkhardt, J., Benz, R. and Meneses, K. (2010) The Out of Pocket Cost of Breast Cancer Survivors: A Review. Journal of Cancer Survivorship, 4, 202-209.
http://dx.doi.org/10.1007/s11764-010-0125-y [34] Yabroff, K., Lund, J., Kepka, D. and Mariotto, A. (2011) Economic Burden of Cancer in the United States: Estimates, Projections, and Future Research. Cancer Epidemiology Biomarkers & Prevention, 20, 2006-2014.
http://dx.doi.org/10.1158/1055-9965.EPI-11-0650 [35] Mathews, M. and Park, A. (2009) Identifying Patients in Financial Need: Cancer Care Providers’ Perceptions of Barriers. Clinical Journal of Oncology Nursing, 13, 501-505.
http://dx.doi.org/10.1188/09.CJON.501-505 [36] Yabroff, K., Lamont, E.B., Mariotto, A., Warren, J.L., Topor, M., Meekins, A., et al. (2008) Cost of Care for Elderly Cancer Patients in the United States. Journal of the National Cancer Institute, 100, 630-641.
http://dx.doi.org/10.1093/jnci/djn103 [37] Salz, R., Oeffinger, K.C., McCabe, M.S., Layne, T.M., and Bach, P.B. (2012) Survivorship Care Plans in Research and Practice. CA: A Cancer Journal for Clinicians, 62, 101-117.
http://dx.doi.org/10.3322/caac.20142 [38] Hewitt, M., Greenfield, S. and Stovall, E. (2005) From Cancer Patient to Cancer Survivor: Lost in Transition. Institute of Medicine and National Research Council of the National Academies, Washington DC. [39] (2008) GACHA Annual Report 2008: Delaware Governor’s Advisory Council on Hispanic Affairs. Delaware Health and Social Services, New Castle. [40] Ennis, S., Rios-Vargas, M. and Albert, N. (2011) The Hispanic Population: 2010. US Census Bureau. [41] (2012) Cancer Facts and Figures for Latinos/Hispanics 2012-2014. American Cancer Society, Atlanta. [42] Waters, E., Sullivan, H. and Rutten, L.F. (2009) Cancer Prevention Information-Seeking among Hispanic and Non Hispanic Users of the National Cancer Institute’s Cancer Information Service: Trends in Telephone and Live-Help Use. Journal of Health Communication: International Perspectives, 14, 476-486.
http://dx.doi.org/10.1080/10810730903032952 [43] McCormack, L., et al. (2013) Communication and Dissemination Strategies to Facilitate the Use of Health-Related Evidence. Evidence Report/Technology Assessment No. 213, Rockville.