|Year : 2011 | Volume
| Issue : 3 | Page : 532
Assessing educational needs of potential hepatitis C patients at a Veterans Affairs medical center
Louis Stokes Department of Veterans Affairs Medical Center, Cleveland, Ohio, USA
|Date of Submission||11-Aug-2010|
|Date of Acceptance||09-Nov-2011|
|Date of Web Publication||05-Dec-2011|
A R Jennings
Louis Stokes Department of Veterans Affairs Medical Center, Cleveland, Ohio
Source of Support: None, Conflict of Interest: None
Background: Hepatitis C virus (HCV) infection is a major public health threat throughout the world because of its ability to lead to cirrhosis, hepatocellular carcinoma and need for liver transplant. Findings from studies have illustrated that levels of knowledge and awareness are low among those populations most affected by hepatitis C. The purpose of this descriptive pilot study was to assess the educational needs of potential hepatitis C patients at a Veterans Administration (VA) medical center. Few studies have identified the educational strategies preferred among patients who are diagnosed with hepatitis C.
Methods: Potential hepatitis C patients in this study are defined as those individuals who had laboratory tests indicating abnormal liver enzymes and liver function tests. A survey 'Assessing Educational Needs of Potential Hepatitis C Patients' included 13 questions relating to the educational needs of this population.
Results: A total of 152 patients completed the survey over a period of six months. The participants from the study did not agree that there was adequate educational material available to them in the hepatitis C clinic (71%). Out of the several educational delivery methods listed, presentations given by healthcare professionals to a large group of people were most popular at 36.2%. Participants (61%) would be interested in joining a support group and 56% felt comfortable receiving advice from health care professionals via a computer. The topic that participants would most like to learn about was living with hepatitis C.
Conclusion: Assessing educational needs of potential hepatitis C patients provides a starting point in the discussion of how healthcare professionals can best deliver education. It is important to note that hepatitis C patients worldwide have a high degree of heterogeneity based upon their differing comorbid conditions, which would warrant specialized educational programs with the utilization of a variety of educational strategies.
Keywords: Educational needs, educational strategies, Hepatitis C, veterans
|How to cite this article:|
Jennings A R. Assessing educational needs of potential hepatitis C patients at a Veterans Affairs medical center. Educ Health 2011;24:532
Hepatitis C virus (HCV) infection is a major public health threat because of its ability to lead to cirrhosis, hepatocellular carcinoma and need for liver transplant. Levels of knowledge and awareness are low among those populations most affected by hepatitis C1. Most commonly, HCV is spread through contact with blood, persons who inject drugs, unsafe injection practices at medical centers and from mother to child at the time of birth2. HCV is found worldwide and approximately 130 to 170 million people are living with HCV infection3. Countries with high rates of chronic infection include Egypt (22%), Pakistan (4.8%) and China (3.2%)4. The high prevalence of hepatitis C worldwide warrants global surveillance of the diseases to determine specific strategies for disease prevention and control.
In every country, infectious disease surveillance is an essential task for public health authorities and includes primary functions such as: 1) detecting cases of disease in the population; 2) detecting outbreaks and identifying diseases trends; 3) providing appropriate responses to disease outbreaks; and 4) providing surveillance information to assist in health policy and educational programming5. From an international perspective, the Global Infectious Disease Surveillance Framework focuses on primary surveillance functions that are linked to national healthcare systems with various formal entities such as the World Health Organization (WHO), national public health authorities, United Nations Children’s Fund (UNICEF), epidemiology training networks and military laboratory networks. Informal entities in the framework include non-governmental organizations, media/press, internet discussion sites and the Global Health Intelligence Network5. The informal and formal networks embedded in the Global Infectious Disease Surveillance Framework provide information on specific disease threats5. A major advantage of utilizing the framework has been with the collaboration among medical professionals, national governments and foreign assistance agencies to develop control programs that focus on specific diseases such as influenza, polio and guinea worm5. Overall, developing countries are a weak link in the Global Infectious Disease Surveillance Network because surveillance systems in developing countries suffer from constraints, such as lack of human and material resources, weak infrastructure, poor coordination and weak linkages between surveillance and response5. Despite the fact that surveillance functions may be problematic in some countries, it is important to continue to seek the most effective strategies to educate a population about hepatitis C in hopes of decreasing morbidity and mortality rates.
It is estimated that 1.3 percent of the general U.S. population is infected with the hepatitis C virus6. A recent study reported the prevalence of HCV seropositivity in the Veterans Administration (VA) population at 5.4%, which is three times greater than the U.S. general population7. The impact of hepatitis C will soar because most of the health consequences of hepatitis C emerge decades after the initial infection. Complexities exist when managing viral hepatitis C in vulnerable populations such as veterans. Medical treatment only represents one component of the comprehensive plan of care for those patients with hepatitis C. Studies have shown that psychiatric and substance use disorders among veterans are thought to contribute to poor tolerance, non-adherence and early discontinuation of antiviral treatments and/or sustained virologic response rates8-10. In addition to the above obstacles, patients may have nutritional deficits, other existing chronic illnesses, lack a stable living environment or inadequate family support. These limitations make it absolutely essential that patient education for veterans is delivered in the most amenable manner in order to increase the level of understanding about hepatitis C.
Few studies have identified the educational strategies preferred among patients with hepatitis C. The VA National Hepatitis C Resource Center Program offers a general hepatitis C group lecture format education session to patients, which addresses how the liver works, the different types of hepatitis, what hepatitis C is, how to manage the disease and how it can be treated11.
A VA study examining hepatitis C educational programs for Veterans suggests that health literacy may influence the rates of completion of evaluation for treatment of chronic hepatitis C12. Another VA study is trying to ascertain the association between primary and specialty healthcare utilization and the educational level that hepatitis C patients have about their disease13. An ongoing VA study by Groessl14 is exploring a self-management intervention involving problem-solving skills and cognitive-behavioral techniques, along with traditional information-oriented patient education to encourage patients to manage their hepatitis C more effectively. Thus, the purpose of this descriptive pilot study was to assess the educational needs of potential hepatitis C patients at a VA medical center. Potential hepatitis C patients are those individuals who had laboratory tests indicating abnormal liver enzymes and liver function tests. These individuals were then recommended to the hepatitis C clinic for further testing and evaluation. Potential hepatitis C patients are relevant to this study because they are being asked to describe their educational needs before being diagnosed with an actual hepatitis C diagnosis and before being overwhelmed with the many complexities that exist with this disease.
A survey 'Assessing Educational Needs of Potential Hepatitis C Patients' was administered by the nurse researcher in the hepatitis C clinic at one VA medical center. Informed consent was obtained from study participants; the project was approved by the VA Institutional Review Board. There was a 45-minute mandatory hepatitis C introductory educational program for all potential hepatitis C patients. During each program, a hepatologist, pharmacist and psychologist spoke about such subjects as diagnosis, treatment, depression, lifestyle changes and medications in relation to hepatitis C. Immediately after the introductory program, the participants were recruited by the researcher to enroll in the current study and completed the survey. The introductory educational program was offered once a week throughout the year allowing the researcher to collect data on a continuing basis.
The survey consisted of 13 questions with sub-parts on the educational needs of potential hepatitis C patients, including items on educational delivery methods, interest in support groups, topics of interest related to hepatitis C and preferred services relating to hepatitis C. Prior to its use, the survey was piloted with five potential hepatitis C patients. The patients gave their feedback and revisions were made accordingly by the author. The survey has not been evaluated for test-retest reliability but has face validity. Questions can reasonably be expected to elicit information regarding the patient’s educational needs. A copy of the survey is available on request from the author. A power analysis indicated that based on 150 participants with a medium effect size of .40 and alpha of 0.05, study power would be .80.
There was a 100% response rate for the study, with 152 participants. In terms of demographic characteristics, the mean age of participants was 60 years old, and 98% were male. The responding veterans from this study did not agree that there was an adequate amount of educational material about hepatitis C in the hepatitis C clinic (71% disagreed). Most thought that their support person was interested in receiving educational materials about hepatitis C (67%); furthermore, 78% thought that their support person would be interested in participating in educational sessions. Out of the several educational delivery methods listed, presentations given by healthcare professionals to a large group of people were most popular at 36.2%.
Fifty- seven percent of the participants stated that they had access to a computer and 56% felt comfortable in receiving advice from healthcare professionals regarding hepatitis C via the computer. Sixty-one percent of the participants would be interested in joining a regular support group at the VA hepatitis C clinic, and 72% would attend this group on a monthly basis. Many participants identified the factor 'too time consuming' as most likely to prevent them from joining a monthly support group (41%). Only 42% of the participants thought that it would also be beneficial for their support person to join a hepatitis C caregiver support group. The topic that participants would most like to learn about during hepatitis C educational sessions was 'living with hepatitis' (61%). Most participants (76%) wanted a resource directory with contacts to various social agencies; 55% said they would like to receive a monthly newsletter.
Table 1: Results of assessment of educational needs of potential hepatitis c patients at one veterans administration (VA) medical center in the United States (n=152)
Assessing educational needs of potential hepatitis C patients provides a starting point in the discussion of how healthcare professionals can best deliver education to improve the level of understanding about hepatitis C. Scotland has published their first Hepatitis C Action Plan, which emphasizes the importance of also educating, informing and raising awareness of hepatitis C among health, social care and criminal justice professionals15. Findings from a Canadian study indicated that 52% of patients at their first HCV clinic visit rated their HCV knowledge as 'fair' or 'poor' and identified HCV education as an important HCV healthcare need1 .
It was clear that the population in the present study wanted more educational material about hepatitis C as evidenced by over 70% of participants saying that there was not an adequate amount of educational material in the clinic. In addition to the standard hepatitis C lecture given at the VA hepatitis C clinic, handouts, CDs, and books made available to this population may also help meet their educational need. Surjadi et al., reported that formal HCV education is effective in improving HCV knowledge, and rates it as an effective strategy in reducing disparities in HCV disease16.
Those patients who had support persons felt that these significant others could benefit from educational materials/workshops. However, the majority also thought that their support person would not benefit from a hepatitis C caregiver support group. This could be an indication of a lack of knowledge or awareness on the part of the patient on how complex the disease is and the stress placed on the support person. Another major initiative cited in the Scottish Hepatitis C Action Plan was to educate caregivers and those individuals newly diagnosed with Hepatitis C about the complexities associated with this disease15.
Even though participants in this study preferred large group presentations (36.2%), there also seemed to be an interest in small group presentations and the utilization of videos. Eighty percent of the participants thought that a variety of educational strategies may be useful when learning about hepatitis C. This finding may also indicate that there needs to be a better understanding of alternative optimal methods of education delivery to veterans. Self -management interventions have been shown to improve HCV knowledge among veterans, where veterans attending a self -management workshop improved in the areas of HCV knowledge, self -efficacy, vitality and physical functioning14.
The majority of the participants had access to a computer; however a large percentage did not want to use it to access educational information. Despite this finding, the majority who did have computer access felt comfortable receiving advice from healthcare professionals regarding hepatitis C via the computer. This finding may suggest that some type of physician/nurse advice computer program may be of interest and benefit to this population. Tele-health programs may also benefit patients where traditional delivery of health services is affected by distance and lack of available local clinicians to offer services.
Having monthly support groups was important for the participants in this study but the time and distance to drive to the VA could be problematic in terms of participation in the support group on a regular basis. Perhaps offering online support groups could be a viable option. Participants overwhelmingly wanted to know more information about how to live with hepatitis C, suggesting the vital importance of understanding their treatment regimen and having support mechanisms in place. Preferred ongoing support mechanisms could be in the form of a resource directory and monthly newsletter. The resource directory could have various community agencies listed as well as individuals currently undergoing treatment for hepatitis C who wish to be supportive of these people newly diagnosed with hepatitis C. In this regard, a study done in Dublin, Ireland suggests that involving injection drug user (IDU) peers who completed HCV treatment into health promotion programs may be beneficial in helping to combat hepatitis C17.
A limitation of this study was sample size. A larger sample of VA potential hepatitis C patients would have provided a broader understanding of the educational needs of this population. Including more demographic variables in the survey could have aided in the identification of variables that were predictors for specific educational needs. Further, the study assesses self-reports, not observations of behavior. Nonetheless, the data contribute to a continuing discussion about how to best provide educational strategies for a vulnerable population.
It is important to note that hepatitis C patients worldwide have a high degree of heterogeneity based upon their differing comorbid conditions, which would warrant specialized educational programs with the utilization of a variety of educational strategies. One of Canada’s Hepatitis C strategies is to have HCV information used in programs peer reviewed, to ensure that it is culturally appropriate and available in a variety of languages, learning styles and literacy levels18 . A positive diagnosis of hepatitis C can result in anxiety and providing education early on to address the many aspects of this disease is essential. Conducting qualitative studies may shed additional light on which educational strategies are preferred and why. Approaches such as the Global Infectious Diseases Surveillance Framework will serve as a guide for healthcare professionals as it provides surveillance information to assist in educational programming. Perhaps developing a framework specifically for identifying educational needs and strategies for hepatitis C patients would be most helpful to healthcare professionals worldwide as they struggle to determine which educational strategies are most effective for this population.
1. Balfour L, Cooper C, Tasca G, et al. Evaluation of health care needs and patient satisfaction among hepatitis C patients treated at a hospital based viral hepatitis clinic. Canadian Journal of Public Health. 2004; 95:272-277.
2. Hepatitis C Information for Health Professionals. Hepatitis C FAQ’s for Health Professionals. Centers for Disease Control.2010. Retrieved 10-15-2011 from http://www.cdc.gov/hepatitis/hcv/hcvfaq.htm
3. United States Department of Health and Human Services. Combating the Silent Epidemic of Viral Hepatitis Action Plan for the Prevention, Care, and Treatment of Viral Hepatitis. 2010. Retrieved 10-11-2011 from http://www.hhs.gov/ash/initiatives/hepatitis.
4. World Health Organization. Hepatitis C fact Sheet. 2010. Retrieved 10-1-2011 from www.who.int/entity/mediacentre/factsheets/fs280/en/
5. United States Accounting Office. Global Health: Framework for Infectious Disease Surveillance. 2010. Retrieved 10-1-2011 from http://www.gao.gov/new.items/ns00205r.pdf
6. National Hepatitis C Registry Reports. (U.S. Department of Veterans Affairs). 2007. Retrieved July 28, 2010 from http://www.hepatitis.va.gov/index.asp
7. VA National Clinical Public Health Programs-Hepatitis C. 2007. Retrieved July 24, 2010 from http://www.hepatitis.va.gov/patient/index.asp
8. Cawthrone CH, Rudat KR, Burton MS, et al. Limited success of HCV antiviral therapy in United States Veterans. American Journal of Gastroenterology. 2002; 97:149-155.
9. Chainuvati S, Khalid SK, Kancir S, et al. Comparison of hepatitis C treatment patterns in patients with or without psychiatric and/or substance use disorders. Journal Viral Hepatitis. 2006; 13:235-241.
10. Nguyen HA, Miller AL, Dieperink E, et al. Spectrum of disease in U.S. veteran patients with hepatitis C. American Journal of Gastroenterology. 2002; 97:1813-1820.
11. Hepatitis C Resource Center: Hepatitis C (U.S. Department of Veterans Affairs). 2009. Retrieved August 1, 2010 from http://www.hepatitis.va.gov/patient/index.asp
12. Saha S, Freeman M, Tippens KM, et al. Racial and ethnic disparities in the VA healthcare system: A systematic review. Journal of General Internal Medicine. 2008; 23:654-671.
13. Beste LA, Straits-Traster S, Zickermond M, et al. Greater disease specific knowledge but not satisfaction with care for chronic Hepatitis C. Alimentary Pharmacy and Therapeutics. 2009; 30:275-282.
14. Groessl EJ, Weingart KR, Stepnowsky CJ, et al. The hepatitis C self management programme: A randomized controlled trial. Journal of Viral Hepatitis. 2011; 18:358-368.
15. 15. Healthier Scotland. Scottish Executive. Hepatitis C Action Plan for Scotland. 2006. Retrieved 10-12-2011 from http://www.scotland.gov.uk/Publications/2006/09/15093626/0
16. Surjadi M, Torruellas C, Ayala C, et al. Formal patient education improves patient knowledge of hepatitis C in vulnerable populations. Digestive Diseases and Sciences. 2011; 56:213-219.
17. Swan D, Long J, Carr O, et al. Barriers to and facilitators of hepatitis C testing, management, and treatment among current and former injecting drug users: A qualitative explanation. AIDS Patient Care and STDs. 2010; 24:753-762.
18. Canadian Hepatitis C Strategy. 2005. Retrieved 10-1-2011 from http://www.hemophilia.ca/files/Responding%20to%20the%20epidemic-EN.pdf