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Australian Indigenous cancer patients’ self-report of diagnosis, treatment and comorbidity data: how does it compare to medical chart review.
Abstract
Rationale: The quality of patient-centred care relies upon the reliability of the data used to produce performance measures. The agreement between patient self-report and medical chart review among Aboriginal and Torres Strait Islander cancer patients is unknown.
Objective: To examine the concordance between patient self-report and medical chart review in determining cancer type, current and previous cancer treatment, comorbidities and patient characteristics associated with agreement.
Method: Aboriginal and Torres Strait Islander cancer patients (≥18 years) who had received cancer treatment in the past 30 days (n=208) were recruited. The prevalence, sensitivity, specificity, total agreement and Kappa coefficients (K) were estimated to determine the agreement (yes + yes; no + no) between self-reported data and medical records.
Results: 13.5% of the patients could not accurately identify their cancer type. For treatment variables, raw agreement ranged from 70.5% to 92.4%, although, after correcting for chance, there was a lack of consistency for current radiation and past treatment variables (K= -0.01 to 0.48). Sensitivity and specificity were moderate to high for current surgery and chemotherapy. The greatest crude prevalence difference by data source was observed for comorbidities not specified in the questionnaire. Sensitivity and specificity were high for diabetes.
Conclusion: investigators and policy makers may rely upon patient self-report for diabetes, current cancer treatment of surgery and chemotherapy. However, should be cautious when considering patient self-report for past treatment and other comorbid conditions.
Keywords
References
Tisnado, D.M., Adams, J.L., Liu, H., Damberg, C.L., Chen, W.P., Hu, F.A., Carlisle, D.M., Mangione, C.M. & Kahn, K.L. (2006). What is the concordance between the medical record and patient self-report as data sources for ambulatory care? Medical Care 44 (2) 132-140.
Zhu, K., McKnight, B., Stergachis, A., Daling, J.R. & Levine, R.S. (1999). Comparison of self-report data and medical records data: results from a case-control study on prostate cancer. International Journal of Epidemiology 28 (3) 409-417.
Wu, L. & Ashton, C.M. (1997). Chart review. A need for reappraisal. Evaluation & the Health Professions 20 (2) 146-163.
Tisnado, D.M., Adams, J.L., Liu, H., Damberg, C.L., Hu, A., Chen, W.P. & Kahn, K.L. (2007). Does concordance between data sources vary by medical organization type? American Journal of Managed Care 13 (6 Part 1) 289-296.
Goldman, N., Lin, I.F., Weinstein, M. & Lin, Y.H. (2003). Evaluating the quality of self-reports of hypertension and diabetes. Journal of Clinical Epidemiology 56 (2) 148-154.
Skinner, K.M., Miller, D.R., Lincoln, E., Lee, A. & Kazis, L.E. (2005). Concordance between respondent self-reports and medical records for chronic conditions: experience from the Veterans Health Study. Journal of Ambulatory Care Management 28 (2) 102-110.
Jurek, A.M., Greenland, S., Spector, L.G., Roesler, M.A., Robison, L.L. & Ross, J.A. (2011). Self-report versus medical record - perinatal factors in a study of infant leukaemia: a study from the Children's Oncology Group. Paediatric Perinatal Epidemiology 25 (6) 540-548.
Katz, J.N., Chang, L.C., Sangha, O., Fossel, A.H. & Bates, D.W. (1996). Can comorbidity be measured by questionnaire rather than medical record review? Medical Care 34 (1) 73-84.
Mukerji, S.S., Duffy, S.A., Fowler, K.E., Khan, M., Ronis, D.L. & Terrell, J.E. (2007). Comorbidities in head and neck cancer: agreement between self-report and chart review. Otolaryngology Head Neck Surgery 136 (4) 536-542.
Napper, L.E., Fisher, D.G., Reynolds, G.L. & Johnson, M.E. (2010). HIV risk behavior self-report reliability at different recall periods. AIDS and Behaviour 14 (1) 152-161.
Aday, L.A., Sellers, C. & Andersen, R.M. (1981). Potentials of local health surveys: a state-of-the-art summary. American Journal of Public Health 71 (8) 835-840.
Vass, A., Mitchell, A. & Dhurrkay, Y. (2011). Health literacy and Australian Indigenous peoples: an analysis of the role of language and worldview. Health Promotion Journal of Australia 22 (1) 33-37.
Marrone, S. (2007). Understanding barriers to health care: a review of disparities in health care services among indigenous populations. International Journal of Circumpolar Health 66 (3) 188-198.
Shahid, S., Finn, L., Bessarab, D. & Thompson, S.C. (2009). Understanding, beliefs and perspectives of Aboriginal people in Western Australia about cancer and its impact on access to cancer services. BMC Health Services Research 9, 132.
Garvey, G., Towney, P., McPhee, J.R., Little, M. & Kerridge, I.H. (2004). Is there an Aboriginal bioethic? Journal of Medical Ethics 30 (6) 570-575.
Garvey, G., Beesley, V.L., Janda, M., O'Rourke, P.K., He, V.Y., Hawkes, A.L., Elston, J.K., Green, A.C., Cunnigham, J. & Valery, P.C. (2015). Psychometric properties of an Australian supportive care needs assessment tool for Indigenous patients with cancer. Cancer 121 (17) 3018-3026.
Adams, J., Valery, P.C., Sibbritt, D., Bernardes, C.M., Broom, A. & Garvey, G. (2015). Use of Traditional Indigenous Medicine and Complementary Medicine Among Indigenous Cancer Patients in Queensland, Australia. Integrative Cancer Therapy 14 (4) 359-365.
Australian Institute of Health and Welfare. (2004). Rural, regional and remote health: a guide to remote classifications. Cat. no. PHE 53. Canberra: AIHW.
Australian Bureau of Statistics. (2006). Census of Population and Housing: Socio-Economic Indexes for Areas (SEIFA), Data Cube only, 2006. Released 2008 edn: Canberra, Australia.
Viera, A.J. & Garrett, J.M. 92005). Understanding interobserver agreement: the kappa statistic. Family Medicine 37 (5) 360-363.
Phillips, K.A., Milne, R.L., Buys, S., Friedlander, M.L., Ward, J.H., McCredie, M.R., Giles, G.G. & Hopper, J.L. (2005). Agreement between self-reported breast cancer treatment and medical records in a population-based Breast Cancer Family Registry. Journal of Clinical Oncology 23 (21) 4679-4686.
Cegala, D.J. (2003). Patient communication skills training: a review with implications for cancer patients. Patient Education and Counseling 50 (1) 91-94.
Shahid, S., Finn, L.D. & Thompson, S.C. (2009). Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting. Medical Journal of Australia 190 (10) 574-579.
Aiello Bowles, E.J., Tuzzio, L., Wiese, C.J., Kirlin, B., Greene, S.M., Clauser, S.B. & Wagner, E.H. (2008). Understanding high-quality cancer care: a summary of expert perspectives. Cancer 112 (4) 934-942.
McCoy, S.I., Jones, B., Leone, P.A., Napravnik, S., Quinlivan, E.B., Eron, J.J. & Miller, W.C. (2010). Variability of the date of HIV diagnosis: a comparison of self-report, medical record, and HIV/AIDS surveillance data. Annals of Epidemiology 20 (10) 734-742.
Okura, Y., Urban, L.H., Mahoney, D.W., Jacobsen, S.J. & Rodeheffer, R.J. (2004). Agreement between self-report questionnaires and medical record data was substantial for diabetes, hypertension, myocardial infarction and stroke but not for heart failure. Clinical Epidemiology 57 (10) 1096-1103.
Simpson, C.F., Boyd, C.M., Carlson, M.C., Griswold, M.E., Guralnik, J.M. & Fried, L.P. (2004). Agreement between self-report of disease diagnoses and medical record validation in disabled older women: factors that modify agreement. Journal of the American Geriatrics Society 52 (1) 123-127.
Mor, V., Allen, S. & Malin, M. (1994). The psychosocial impact of cancer on older versus younger patients and their families. Cancer 74 (Supplement 7) 2118-2127.
De-loyde, K.J., Harrison, J.D., Durcinoska, I., Shepherd, H.L., Solomon, M.J. & Young, J.M. (2015). Which information source is best? Concordance between patient report, clinician report and medical records of patient co-morbidity and adjuvant therapy health information. Journal of Evaluation in Clinical Practice 21 (2) 339-346.
Bernardes, C.M., Whop, L.J., Garvey, G. & Valery, P.C. (2012). Health service utilization by indigenous cancer patients in Queensland: a descriptive study. International Journal of Equity Health 11, 57.
Gausia, K., Thompson, S.C., Nagel, T., Schierhout, G., Matthews, V. & Bailie, R. (2015). Risk of antenatal psychosocial distress in indigenous women and its management at primary health care centres in Australia. General Hospital Psychiatry 37 (4) 335-339.
Wardle, J., Parmenter, K. & Waller, J. (2000). Nutrition knowledge and food intake. Appetite 34 (3) 269-275.
Leikauf, J. & Federman, A.D. (2009). Comparisons of self-reported and chart-identified chronic diseases in inner-city seniors. Journal of the American Geriatrics Society 57 (7) 1219-1225.
Sridharan, S., Berdeprado, J., Vilar, E., Roberts, J. & Farrington, K. (2014). A self-report comorbidity questionnaire for haemodialysis patients. BMC Nephrology 15, 134.
Henderson, G., Robson, C., Cox, L., Dukes, C., Tsey, K. & Haswell, M. (2007). Social and emotional wellbeing of Aboriginal and Torres Strait Islander people within the broader context of the social determinants of health. AusEinetter 2 (29) 14-19 . Accessed 05/06/2015.
Valery, P.C., Coory, M., Stirling, J. & Green, A.C. (2006). Cancer diagnosis, treatment, and survival in Indigenous and non-Indigenous Australians: a matched cohort study. Lancet 367 (9525) 1842-1848.
Luck, J., Peabody, J.W., Dresselhaus, T.R., Lee, M. & Glassman, P. (2000). How well does chart abstraction measure quality? A prospective comparison of standardized patients with the medical record. American Journal of Medicine 108 (8) 642-649.
DOI: http://dx.doi.org/10.5750/ejpch.v4i2.1093
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