Breast cancer patients' recall of receiving patient assistance services

Jenny J Lin, Kezhen Fei, Rebeca Franco, Nina A Bickell, Jenny J Lin, Kezhen Fei, Rebeca Franco, Nina A Bickell

Abstract

Background: The objective of this study was to assess factors that affect breast cancer patients' recall of patient assistance services.

Methods: We surveyed newly-diagnosed breast cancer patients and compared recall of receiving patient assistance services at 2 weeks and 6 months in a patient-assistance randomized controlled trial aimed to connect women to such programs. The intervention group received information about assistance programs targeted to their practical, psychosocial, and/or informational needs; the control group received a Department of Health pamphlet about breast cancer and its treatment, including a list of patient assistance services.

Findings: Of 333 women, 210 (63%) reported informational, 183 (55%) psychosocial and 177 (53%) practical needs. At 2 weeks, 96% (202/210) of women with informational needs reported receiving informational material but at 6 months, recall dropped to 69% (140/210). All women whose informational needs were met recalled receiving information, compared to 31% whose needs were unmet (p < 0.0001). Of 109 intervention patients with psychosocial or practical needs, 77% (79) contacted a program specified in their action plan at 2 weeks. However, at 6 months, only 39% (31/79) recalled contacting a program. Women without recall were less likely to report having their needs met (6% vs. 58%; p < 0.001).

Conclusions: Recall of patient assistance services is strongly related to having needs met. Use of patient surveys to evaluate utilization or impact of such programs should be used with caution due to poor patient recall. CLINICAL TRIALS # NCT00233077: http://www.clinicaltrials.gov/ct2/show/NCT00233077?term=Nina+Bickell&rank=2.

Keywords: Breast cancer; Patient assistance; Recall; Survey research.

References

    1. Allicock M, Campbell MK, Valle CG, Barlow JN, Carr C, Meier A, Gizlice Z. Evaluating the implementation of peer counseling in a church-based dietary intervention for African Americans. Patient education and counseling. 2010;81(1):37–42. doi: 10.1016/j.pec.2009.11.018.
    1. Bancej CM, Maxwell CJ, Snider J. Inconsistent self-reported mammography history: findings from the National Population Health Survey longitudinal cohort. BMC Health Serv Res. 2004;4(1):32. doi: 10.1186/1472-6963-4-32.
    1. Bickell NA: Quality of breast cancer Care: perception vs practice.J Clin Oncol in press
    1. Boudreau DM, Daling JR, Malone KE, Gardner JS, Blough DK, Heckbert SR. A validation study of patient interview data and pharmacy records for antihypertensive, statin, and antidepressant medication use among older women. Am J Epidemiol. 2004;159(3):308–317. doi: 10.1093/aje/kwh038.
    1. Butow P, Brindle E, McConnell D, Boakes R, Tattersall M. Information booklets about cancer: factors influencing patient satisfaction and utilization. Patient education and counseling. 1998;33(2):129–141. doi: 10.1016/S0738-3991(97)00071-2.
    1. Caplan LS, McQueen DV, Qualters JR, Leff M, Garrett C, Calonge N. Validity of women's self-reports of cancer screening test utilization in a managed care population. Cancer Epidemiol Biomarkers Prev. 2003;12(11 Pt 1):1182–1187.
    1. Caplan LS, Mandelson MT, Anderson LA. Validity of self-reported mammography: examining recall and covariates among older women in a Health Maintenance Organization. Am J Epidemiol. 2003;157(3):267–272. doi: 10.1093/aje/kwf202.
    1. Caskie GI, Willis SL. Congruence of self-reported medications with pharmacy prescription records in low-income older adults. Gerontologist. 2004;44(2):176–185. doi: 10.1093/geront/44.2.176.
    1. Clegg LX, Potosky AL, Harlan LC, Hankey BF, Hoffman RM, Stanford JL, Hamilton AS. Comparison of self-reported initial treatment with medical records: results from the prostate cancer outcomes study. Am J Epidemiol. 2001;154(6):582–587. doi: 10.1093/aje/154.6.582.
    1. Cohen A, Mohan KN, Fei K, Geduld AN, Bickell NA. Are patient assistance programmes able to meet the needs of New York City women with breast cancer? Women's perspectives. European journal of cancer care. 2009;18(1):50–56. doi: 10.1111/j.1365-2354.2008.00928.x.
    1. Craig BM, Quinn GP, Vadaparampil ST. Sensitivity of self-report mammography use in older women. Am J Prev Med. 2009;37(5):441–444. doi: 10.1016/j.amepre.2009.07.007.
    1. David N, Schlenker P, Prudlo U, Larbig W. Online counseling via e-mail for breast cancer patients on the German internet: preliminary results of a psychoeducational intervention. Psychosoc Med. 2011;8:Doc05.
    1. Desai MM, Bruce ML, Desai RA, Druss BG. Validity of self-reported cancer history: a comparison of health interview data and cancer registry records. Am J Epidemiol. 2001;153(3):299–306. doi: 10.1093/aje/153.3.299.
    1. Epstein AM, Lee TH, Hamel MB. Paying physicians for high-quality care. N Engl J Med. 2004;350(4):406–410. doi: 10.1056/NEJMsb035374.
    1. Ferrante JM, Ohman-Strickland P, Hahn KA, Hudson SV, Shaw EK, Crosson JC, Crabtree BF. Self-report versus medical records for assessing cancer-preventive services delivery. Cancer Epidemiol Biomarkers Prev. 2008;17(11):2987–2994. doi: 10.1158/1055-9965.EPI-08-0177.
    1. Fiscella K, Ransom S, Jean-Pierre P, Cella D, Stein K, Bauer JE, Crane-Okada R, Gentry S, Canosa R, Smith T, et al. Patient-reported outcome measures suitable to assessment of patient navigation. Cancer. 2011;117(15 Suppl):3603–3617.
    1. Freund KM, Battaglia TA, Calhoun E, Dudley DJ, Fiscella K, Paskett E, Raich PC, Roetzheim RG. National Cancer Institute Patient Navigation Research Program: methods, protocol, and measures. Cancer. 2008;113(12):3391–3399. doi: 10.1002/cncr.23960.
    1. Gabrijel S, Grize L, Helfenstein E, Brutsche M, Grossman P, Tamm M, Kiss A. Receiving the diagnosis of lung cancer: patient recall of information and satisfaction with physician communication. J Clin Oncol. 2008;26(2):297–302. doi: 10.1200/JCO.2007.13.0609.
    1. Gordon NP, Hiatt RA, Lampert DI. Concordance of self-reported data and medical record audit for six cancer screening procedures. J Natl Cancer Inst. 1993;85(7):566–570. doi: 10.1093/jnci/85.7.566.
    1. Howard M, Agarwal G, Lytwyn A. Accuracy of self-reports of Pap and mammography screening compared to medical record: a meta-analysis. Cancer Causes Control. 2009;20(1):1–13. doi: 10.1007/s10552-008-9228-4.
    1. Jansen J, Butow PN, van Weert JC, van Dulmen S, Devine RJ, Heeren TJ, Bensing JM, Tattersall MH. Does age really matter? Recall of information presented to newly referred patients with cancer. J Clin Oncol. 2008;26(33):5450–5457. doi: 10.1200/JCO.2007.15.2322.
    1. Kessels RP. Patients' memory for medical information. J R Soc Med. 2003;96(5):219–222. doi: 10.1258/jrsm.96.5.219.
    1. Koppelmans V, Breteler MM, Boogerd W, Seynaeve C, Gundy C, Schagen SB. Neuropsychological performance in survivors of breast cancer more than 20 years after adjuvant chemotherapy. J Clin Oncol: official journal of the American Society of Clinical Oncology. 2012;30(10):1080–1086. doi: 10.1200/JCO.2011.37.0189.
    1. Kravitz R. Patient satisfaction with health care: critical outcome or trivial pursuit? Journal of general internal medicine. 1998;13(4):280–282. doi: 10.1046/j.1525-1497.1998.00084.x.
    1. LaVeist TA, Nickerson KJ, Bowie JV. Attitudes about racism, medical mistrust, and satisfaction with care among African American and white cardiac patients. Med Care Res Rev. 2000;57(Suppl 1):146–161.
    1. Liang W, Burnett CB, Rowland JH, Meropol NJ, Eggert L, Hwang YT, Silliman RA, Weeks JC, Mandelblatt JS. Communication between physicians and older women with localized breast cancer: implications for treatment and patient satisfaction. J Clin Oncol. 2002;20(4):1008–1016. doi: 10.1200/JCO.20.4.1008.
    1. Liu Y, Diamant AL, Thind A, Maly RC. Validity of self-reports of breast cancer treatment in low-income, medically underserved women with breast cancer. Breast cancer research and treatment. 2010;119(3):745–751. doi: 10.1007/s10549-009-0447-5.
    1. Lubeck DP, Hubert HB. Self-report was a viable method for obtaining health care utilization data in community-dwelling seniors. J Clin Epidemiol. 2005;58(3):286–290. doi: 10.1016/j.jclinepi.2004.06.011.
    1. Mandelson MT, LaCroix AZ, Anderson LA, Nadel MR, Lee NC. Comparison of self-reported fecal occult blood testing with automated laboratory records among older women in a health maintenance organization. Am J Epidemiol. 1999;150(6):617–621. doi: 10.1093/oxfordjournals.aje.a010060.
    1. Maunsell E, Drolet M, Ouhoummane N, Robert J. Breast cancer survivors accurately reported key treatment and prognostic characteristics. J Clin Epidemiol. 2005;58(4):364–369. doi: 10.1016/j.jclinepi.2004.09.005.
    1. Nissen MJ, Tsai ML. Blaes AH. Swenson KK: Breast and colorectal cancer survivors' knowledge about their diagnosis and treatment. J Cancer Surviv; 2011.
    1. Oberst K, Bradley CJ, Schenk M. Breast and prostate cancer patient's reliability of treatment reporting. J Registry Manag. 2009;36(1):12–15.
    1. Ong LM, Visser MR, Lammes FB, van Der Velden J, Kuenen BC, de Haes JC. Effect of providing cancer patients with the audiotaped initial consultation on satisfaction, recall, and quality of life: a randomized, double-blind study. J Clin Oncol. 2000;18(16):3052–3060.
    1. Paganini-Hill A, Clark LJ. Comparison of patient recall of hormone therapy with physician records. Menopause. 2007;14(2):230–234. doi: 10.1097/01.gme.0000235364.50028.b5.
    1. Paskett ED, Tatum CM, Mack DW, Hoen H, Case LD, Velez R. Validation of self-reported breast and cervical cancer screening tests among low-income minority women. Cancer Epidemiol Biomarkers Prev. 1996;5(9):721–726.
    1. Penfold RB, Kullgren JT, Miroshnik I, Galbraith AA, Hinrichsen VL, Lieu TA. Reliability of a patient survey assessing cost-related changes in health care use among high deductible health plan enrollees. BMC Health Serv Res. 2011;11:133. doi: 10.1186/1472-6963-11-133.
    1. Phillips KA, Milne RL, Buys S, Friedlander ML, Ward JH, McCredie MR, Giles GG, Hopper JL. Agreement between self-reported breast cancer treatment and medical records in a population-based Breast Cancer Family Registry. J Clin Oncol. 2005;23(21):4679–4686. doi: 10.1200/JCO.2005.03.002.
    1. Pickney CS, Arnason JA. Correlation between patient recall of bone densitometry results and subsequent treatment adherence. Osteoporos Int. 2005;16(9):1156–1160. doi: 10.1007/s00198-004-1818-8.
    1. Posma ER, van Weert JC, Jansen J, Bensing JM. Older cancer patients' information and support needs surrounding treatment: An evaluation through the eyes of patients, relatives and professionals. BMC Nurs. 2009;8:1. doi: 10.1186/1472-6955-8-1.
    1. Schootman M, Jeffe DB, West MM, Aft R. Self-report by elderly breast cancer patients was an acceptable alternative to surveillance, epidemiology, and end results (SEER) abstract data. J Clin Epidemiol. 2005;58(12):1316–1319. doi: 10.1016/j.jclinepi.2005.04.002.
    1. Sohler NL, Coleman SM, Cabral H, Naar-King S, Tobias C, Cunningham CO. Does self-report data on HIV primary care utilization agree with medical record data for socially marginalized populations in the United States? AIDS Patient Care STDS. 2009;23(10):837–843. doi: 10.1089/apc.2009.0056.
    1. Strogatz DS, Croft JB, James SA, Keenan NL, Browning SR, Garrett JM, Curtis AB. Social support, stress, and blood pressure in black adults. Epidemiology Cambridge, Mass. 1997;8(5)):482–487. doi: 10.1097/00001648-199709000-00002.
    1. Takach M. Reinventing Medicaid: state innovations to qualify and pay for patient-centered medical homes show promising results. Health affairs (Project Hope) 2011;30(7):1325–1334. doi: 10.1377/hlthaff.2011.0170.
    1. Turnbull JE, Luther KM. Patient satisfaction report paves way to improved care. QRC Advis. 1996;13(1):1–7.
    1. van Campen C, Sixma H, Friele RD, Kerssens JJ, Peters L. Quality of care and patient satisfaction: a review of measuring instruments. Med Care Res Rev. 1995;52(1):109–133. doi: 10.1177/107755879505200107.
    1. Watson PW, McKinstry B. A systematic review of interventions to improve recall of medical advice in healthcare consultations. J R Soc Med. 2009;102(6):235–243. doi: 10.1258/jrsm.2009.090013.
    1. Zapka JG, Bigelow C, Hurley T, Ford LD, Egelhofer J, Cloud WM, Sachsse E. Mammography use among sociodemographically diverse women: the accuracy of self-report. Am J Public Health. 1996;86(7):1016–1021. doi: 10.2105/AJPH.86.7.1016.

Source: PubMed

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