Assessing Patients’ Knowledge and Attitudes Towards HSCT in an Outpatient-Based Transplant Center in Mexico

Abstract

Introduction The lack of patients' understanding of diagnosis, prognosis and treatment options can complicate an informed decision to undergo HSCT. Our outpatient-based HSCT unit in Northeast Mexico performs near 100 transplants/year. We treat patients from different regions and sociocultural backgrounds, representing a challenge during the initial evaluation. Objective We aim to assess knowledge and attitudes in HSCT candidates regarding their diagnosis, prognosis and treatment including HSCT. Methods Since December 2017, all new adult patients visiting our unit were asked to complete a 36-element survey prior to initial consultation. Questions were taken from a published questionnaire with face validity translated into Spanish, evaluating patients' perception related to diagnosis, prognosis, and treatment options including HSCT. Patients were grouped according to transplant type, place of residence, education, insurance and healthcare provider. We analyzed answers according to patients' perceived level of knowledge regarding HSCT (with vs without enough information to make a decision) and disease risk index (DRI). Variables were analyzed using Chi-squared or Mann-Whitney test. Results Forty-nine patients have answered the survey: 29 females (59.2%), median age 47 years (16-71). Most patients were eligible for auto-HSCT (53.1%), 59.2% lived in another city, 55.1% had low education level, 55.1% had public health insurance, and 65.3% were treated in a public healthcare center. DRI was obtained in 47 patients: high-very high (40.4%) vs low-intermediate (59.6%). Overall, 57.1% stated to have enough information about their diagnosis, and 53.1% about their treatment options and HSCT. More local patients had enough information about treatment options than those living in a foreign city (70 vs 41.4%); p=0.048. No other differences were observed. A higher proportion of patients who reported to have enough information believed that HSCT might cure them compared to those w/o enough information (92.3 vs 65.2%); p=0.019 (Fig 1). Also, 84.6% of patients with enough information expressed to have excellent chances (≥80%) to be cured after HSCT, compared to 52.2% of low-informed ones; p=0.008 (Fig 2). The proportion of high-very high DRI patients that expressed to have excellent chances of being cured with HSCT was similar to those with low-intermediate DRI (68.4 vs 71.4%); p=0.295 (Fig 3). Conclusion Many patients referred to our HSCT unit lack information regarding their disease, prognosis and treatment options. Significantly, patients living in a foreign city were less informed about therapeutic options than local patients. Moreover, patients who perceived to have enough information about HSCT tended to overestimate their prognosis. Implementation of further educational strategies is mandatory to enhance patients' knowledge to take an informed decision for HSCT.