Journal of the Canadian Association of Gastroenterology, 2018, 1(2), 54–59 doi: 10.1093/jcag/gwy012 Original Article Advance Access publication 12 April 2018 Original Article An Educational Needs Assessment for Patients with Liver Disease 1 1,2 Sarah S. Al Ghamdi MBBS , Hemant Shah MD MScCH Division of Gastroenterology, Department of Medicine, University of Toronto, 190 Elizabeth Street, 3-805, Toronto, ON, M5G 2C4 Canada; Toronto Centre for Liver Disease, University Health Network, 200 Elizabeth Street, Toronto ON M5G 2C4, Canada Correspondence: Sarah S. Al Ghamdi, Division of Gastroenterology, Department of Medicine, University of Toronto, 190 Elizabeth Street, 3-805, Toronto, ON, M5G 2C4 Canada, e-mail firstname.lastname@example.org ABSTRACT Introduction: Liver disease forms a global health burden and is a cause of significant morbidity and mortality. Good patient education has proven to be a key tool in disease management, providing sig- nificant benefit in knowledge and behavioral modifications. To develop effective educational tools, a good understanding of patient educational needs and preferred learning methods is necessary. Few studies have evaluated the educational needs of patients with liver disease. This study aims to assess the educational needs of patients at a large tertiary liver center. Method: This study was a questionnaire-based cross-sectional study evaluating patient demograph- ics,perceived and unperceived educational needs (hepatitis B and hepatitis Cknowledge) at a tertiary liver centre. Results: A total of 300 patients completed the questionnaire. Most patients stated they were “extremely ” or “quite” interested in learning more about their liver condition (84.9%, n=242), in either “moderate” or “a lot of ” detail (94.6%, n=202). There was no association between gender, age, level of education, annual income and interest of patients in learning more about their liver condition. There was a significant association between number of clinic visits and interest to learn more (p=0.022), but there was no association between the duration of their follow-up at the clinic and their interest to learn more (p=0.243). Conclusions: Overall, patients showed great interest in learning more about their liver condition, potentially indicating a need for more educational programs. Most patients prefer reading (via internet or pamphlets/brochures) or one-to-one discussions, giving us a good sense of potentially successful educational strategies that will fit the needs of most patients. Keywords: Cirrhosis; Liver disease; Patient education; Patient knowledge. (hepatitis B and C) and fatty liver (4). Many of these conditions INTRODUCTION lead to long-term consequences such as cirrhosis and hepato- Liver disease with all its etiologies forms a global health burden cellular carcinoma (HCC). Adherence to medications, diet, and is a cause of significant morbidity and mortality. Despite follow-up appointments and appropriate self-care are all key recent advancements in treatment options, the global impact factors in improving quality of life and preventing long-term of liver disease on morbidity and mortality remains quite sig- complications in these patients (5). nificant (1, 2), with an estimated 30% increased mortality Good patient education has proven to be a key tool in dis- in the past eight years (3). In Canada, the major etiologies of ease management, providing significant benefit in knowledge liver disease are alcoholic liver disease, chronic viral infections © The Author(s) 2018. Published by Oxford University Press on behalf of the Canadian Association of Gastroenterology. 54 This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http:// creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact email@example.com Downloaded from https://academic.oup.com/jcag/article-abstract/1/2/54/4969718 by guest on 20 June 2018 Journal of the Canadian Association of Gastroenterology, 2018, Vol. 1, No. 2 55 and behavioral modifications (5). It has been shown that the based on feedback from patients. Implied consent was obtained wide variation in patient knowledge may affect patients’ willing - with an explanatory document and the entirely voluntary nature ness to accept and adhere to medical interventions (6). Studies of participation. Patients presenting to the clinic had a variety of show that patient knowledge across many types of liver disease liver disease, including HBV, HCV, compensated and decom- is quite low, albeit difficult to accurately estimate (7). A sys - pensated cirrhosis, and autoimmune liver disease. No trans- tematic review found that simple educational interventions plant patients are followed at this clinic. Patients are referred for patients with viral hepatitis significantly increased patients’ to this clinic by any local or regional physician. Patients who knowledge about their disease (5). More complex educational could not fill out the survey on their own could seek the help of interventions may also lead to positive behavioral changes. a family member or a clinic volunteer. Patients who participated Although many studies have assessed patient knowledge, there once were asked not to fill out the survey during another visit. is a lack of focus on patient perceptions and whether their actual Patients who did not wish to participate were not counted, but knowledge correlates well with their self-perceived knowledge. may have been asked to fill out the survey on a subsequent clinic Several studies have addressed the perceived educational needs visit. The study protocol was approved by the University Health of patients with liver disease (7–12) with variable results. Network Research Ethics Board in Toronto, Ontario. In order to develop effective education tools, it is essen- Measures tial that healthcare educators are aware of the perceived and unperceived needs of their patients, as well as their preferred The survey contained 54 questions covering several domains. learning methods. Although there are currently many educa- Survey questions were designed to cover the goals of this study: tional tools available for patients with liver disease worldwide, • Demographic information: This section of the sur - comprehensive patient education modules that are tailored vey contained 10 questions covering patient gender, to the specific needs of these patients are yet to be developed year of birth, formal education status, annual income, in Canada. The high degree of heterogeneity of liver disease English language fluency, preferred language (reading and the wide variety of potential comorbid conditions suggest and speaking), type of liver condition(s), duration of that patients warrant specialized educational programs using follow-up at the liver clinic and approximate number of a variety of educational strategies. This is supported by one of visits to the clinic to date. Canada’s hepatitis C (HCV) strategies which aim to reduce • Perceived educational needs: This section contained 18 the health and social impact of hepatitis B (HBV) and HCV questions using a Likert scale, as well as both open- and on the liver health of Canadians through the development, close-ended questions. It aimed to assess current per- delivery and evaluation of peer-driven and focused educa- ceived knowledge level, preferred learning styles, learn- tional initiatives. This would ensure that initiatives are cultur - ing topics, educational materials and interest in support ally appropriate and target various learning styles, languages groups. and literacy levels (13). • Unperceived educational needs: HBV and HCV knowl- This cross-sectional study assesses the learning needs of liver edge was assessed using 26 questions covering several disease patients in the form of a paper-based questionnaire. It knowledge domains: diagnosis, symptoms, compli- was conducted at a large tertiary liver centre in Canada. This cations, treatment, self-care, modes of transmission study is unique in that it is the first to include patients with var - and prevention. These questions were designed by the ious types of liver disease, as most studies to date have assessed authors based on prior patient assessment question- patients with HBV or HCV. It is also one of the few studies that naires. Patients with HBV or HCV were asked to answer assesses both the perceived and unperceived needs of patients these. Questions were not subdivided into those per- with viral hepatitis. The data collected will provide information taining to HBV or HCV. to develop relevant education modules for patients with all types of liver disease, which will in turn aim to improve their understanding of the disease and allow them to become active RESULTS participants in their own care. Standard descriptive statistical methods were used. Data collec- tion included 300 completed surveys. METHODOLOGY Patient demographics Study subjects The socio-demographic characteristics of the study group Surveys were distributed randomly to patients presenting for are shown in Table 1. Our sample consisted of 50.5% males outpatient appointments at the Toronto Liver Centre from (n=150) and 49.5% females (n=147), with the remaining March to December 2015. A pilot survey was distributed ini- not specifying a gender. Mean age was 50.4 years (SD=14.4). tially, and questions were altered prior to study commencement Downloaded from https://academic.oup.com/jcag/article-abstract/1/2/54/4969718 by guest on 20 June 2018 56 Journal of the Canadian Association of Gastroenterology, 2018, Vol. 1, No. 2 Table 1. Patient demographics n, % Response rate Gender 99% Male n, % 150, 50.51 Female n, % 147, 49.49 Age, years 78% Mean ± SD 50.41 ± 14.37 Formal Education n, % 98% College/Uni (Postgrad) 140, 47.62 Some College/Uni 55, 18.71 High School 48, 16.33 Some high school 27, 9.18 Elementary 12, 4.08 None 7, 2.38 Other 5, 1.7 Annual Income n, % 78% Figure 1. Interest in learning about liver condition (%, n=285). <30,000$ 95, 35.19 30–60,000$ 53, 19.63 stated they were “extremely” or “quite” interested (84.9%, 60–100,000$ 41, 15.19 n=242). Thirty-five patients (12.3%) had little-moderate inter - >100,000$ 44, 16.3 est, with eight patients (2.8%) stating they had no interest at Liver Condition(s) n, % 94% all (Figure 1). Of those, 200 patients responded further and HBV 50, 17.67 stated they would like to learn “moderate” or “a lot” of details HCV 114, 40.28 (96%, n=192), with the remainder stating they would only like Both HBV & HCV 2, 0.71 to learn basics (4%, n=8). Other 83, 29.33 There was no association between gender, age, level of Did not know 34, 12.01 education, annual income and interest of patients in learning Duration of follow-up 90% more about their liver condition. There was a significant asso - <6 months 47, 17.47 ciation between number of clinic visits and interest to learn 6–12 months 43, 15.99 more. Patients who have visited the clinic more times are 1–3 years 66, 24.54 more interested in further education about their condition 3–5 years 40, 14.87 than those who have visited less frequently (97.1% versus >5 years 73, 27.14 93.7%, p=0.022, Figure 2). Interestingly, there was no asso- Number of appointments 99% ciation between the duration of their follow-up at the clinic First visit 48, 16.22 and their interest to learn more (p=0.243), which may reflect <5 visits 98, 33.11 patients who have been followed long-term for chronic stable >5 visits 150, 50.68 conditions. There was also a significant association between patient interest in learning more and current self-perceived knowledge about liver condition. Patients with greater Baseline data indicated that about half of patients (47.62%, interest in learning more seem to self-perceive their knowl- n=140) had completed a formal college or university degree, edge as being greater than those with less interest (p=0.004, while 2.38% of patients (n=7) had no formal education. Figure 3). Regarding self-reported liver disease, the majority of patients had HBV or HCV or both. There were 84 patients (29.7%) Preferred learning methods who had other types of liver disease. Twelve per cent of patients (n=34) did not know what type of liver disease they had. The Almost all patients stated they learned best by reading remaining patients (5.7%, n=17) did not specify their type of (n=170, 56.7%) or one-on-one discussions (n=155, 51.7%). liver disease. The remaining patients stated they learned best with videos (n=82, 27.3%) or group discussions (n=28, 9.3%). A small Perceived needs number of patients preferred other learning methods (n=7, Regarding the interest of patients in learning more about their 2.3%), which included learning from their physician, flyers or liver condition, response rate was 95% (n=285). Most patients the internet. Downloaded from https://academic.oup.com/jcag/article-abstract/1/2/54/4969718 by guest on 20 June 2018 Journal of the Canadian Association of Gastroenterology, 2018, Vol. 1, No. 2 57 Knowledge domains covered in the questions were diagnosis, prevention, transmission, complications and treatment of HBV and HCV. Mean correct answers was 52% (±24.4%). We also found a significant association between current self-perceived knowl - edge about liver condition and test score percentages (Figure 5). DISCUSSION It is well-established that good patient education has proven to be a key tool in disease management, providing significant ben- efit in knowledge and behavioral modifications (1). The wide variation in patient knowledge may affect patients’ willingness to accept and adhere to medical interventions (6). A recent Figure 2. Association between number of clinic visits and interest in learning (%, p=0.022). study showed that online resources concerning HBV and HCV which are accessed by patients are beyond the previously deter- Of the preferred reading materials, most patients preferred mined necessary grade level for patients to properly compre- the internet (n=189, 63%) or pamphlets/brochures (n=118, hend (14). Although patient education programs are aimed 39.3%). The remaining patients preferred books (n=92, 30.7%), at providing teaching to help improve patient outcomes, these preferred not to read (n=17, 5.7%) or preferred other reading programs are not always targeted at specific patient interests material (n=5, 1.7%). When asked about the types of teaching and personal goals. Overall, there is an increasing need to pro- at the liver clinic (Figure 4), more than 80% of patients were vide more targeted educational resources to patients. interested in computer-based (n=125, 41.7%) or one-to-one This study is unique in that it is the first to evaluate the edu- teaching (n=132, 44%), with the remainder choosing group cational needs of patients with various types of liver disease, as teaching (n=48, 16%), patient-to-patient (n=36, 12%), none most studies to date have only assessed patients with viral hep- (n=31, 10.3%) or other (n=8, 2.7%). atitis. This is also one of the few studies to assess both the per - ceived and unperceived needs of this patient population. The Unperceived needs data aims to provide information to develop more specific edu- A set of 26 questions (true or false and multiple choice ques- cation modules for patients with all types of liver disease, which tions—MCQs) were used to assess the knowledge of HBV and will in turn aim to improve their understanding of the disease HCV patients. A total of 166 patients answered these questions. and allow them to become active participants in their own care. In this study, patients showed interest in learning more about all aspects of their liver condition in great detail. Preferred meth- ods of learning varied, but most patients preferred reading or one-to-one discussions. Almost half of the patients included in Figure 3. Association between patient interest in learning more and current self-perceived Figure 4. Preferred teaching methods at liver centre (%). knowledge about liver condition (%, p = 0.004). Downloaded from https://academic.oup.com/jcag/article-abstract/1/2/54/4969718 by guest on 20 June 2018 58 Journal of the Canadian Association of Gastroenterology, 2018, Vol. 1, No. 2 educational opportunities. As healthcare providers who aim to provide patients with highly effective learning around their liver condition, it is critical that we address these needs. Since every liver clinic will have a unique patient population, the results will likely differ. Future studies should aim at design- ing a standardized needs assessment questionnaire that may be used at different liver clinics to help identify specific edu- cational needs. It would also be useful to validate the question- naire in other languages to cater to a larger patient population. In conclusion, this study suggests that there is a need for more detailed educational resources for patients with all types of liver disease. Educational programs should be tailored to the needs Figure 5. Mean test scores and self-perceived knowledge about liver condition (%, p< 0.001). of the target population in order to be more effective. the study had completed postgraduate education, which may be a reflection of their high interest in patient education and may have Acknowledgments skewed the results. The only association found between interest in The authors thank all members of the Toronto Liver Centre who con- learning more was with the number of clinic visits. Patients with tributed to survey input and distribution. more clinic visits showed more interest in education about their Funding: None. condition. Interestingly, there was no association between the Conflict of interest: None to declare. duration of their time as clinic patients and their interest to learn more. This may reflect patients who have been followed long- Author Contributions term for chronic stable conditions, as compared with patients SSA contributed to data collection and analysis. Both authors contrib- with more acute or severe conditions who have visited the clinic uted equally to questionnaire development, manuscript writing and more often in a shorter period of time. There was also a significant editing. association between patient interest in learning more and current self-perceived knowledge about their liver condition. This associ - References ation was also found between patient knowledge scores and their 1. Lavanchy D. The global burden of hepatitis C. Liver Int self-perceived knowledge. This indicates good patient insight on 2009;29(Suppl 1):74–81. their knowledge (or lack thereof ). 2. Gower E, Estes C, Blach S, et al. Global epidemiology and gen- Several limitations to this study are acknowledged. Although otype distribution of the hepatitis C virus infection. 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Journal of the Canadian Association of Gastroenterology – Oxford University Press
Published: Apr 12, 2018
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