Patient survey, Many hepatitis B patients stop taking meds
Reported by Jules Levin
DDW, May 2007
May 30, 2007 at 9:48 AM
".....69% (208/301) of patients could not name any specific test conducted to monitor their chronic HBV infection. .... About half of HBV patients who are aware of specific tests for HBV were not sure of what the tests actually measure....27% didn't know whether their doctors checked their viral load....Of patients who were aware of the HBV DNA viral load test, an important marker in determining treatment success, 43% did not know what it measured....Only about half of patients who are aware of specific tests for HBV know their most recent test results...49% did not know the purpose of the e antigen/antibody test...46% were nor aware of the purpose of the s antigen/antibody test....36% of patients report keeping track of test results.... 38% of patients admit to missing doses or not taking a dose on time at least once per month....45% have trouble remembering the dose
WASHINGTON, May 30 (UPI) -- Many patients with chronic hepatitis B do not understand it is a lifelong disease and do not comply with necessary drug regimens, says a U.S. survey.
The national survey, funded by Idenix Pharmaceuticals and Novartis Pharma AG, found many patients were not involved in disease management decisions.
The study, based on responses from 301 adult chronic hepatitis B patients on anti-viral therapy, found 24 percent were on interferon treatment. Most of these patients were males between the ages of 31 and 50, with about half being of Asian descent.
The survey also found:
-- 36 percent of respondents mistakenly thought the virus could be spread through sharing utensils.
-- 80 percent were aware of the long-term consequences of the hepatitis B virus.
-- Half of the respondents erroneously believed a cure existed for the chronic virus, though about 60 percent had been in treatment for about a year.
-- 31 percent said they knew specific names of hepatitis B virus tests, but only half knew what the tests measured.
-- 85 percent felt that measuring virus levels was important, though 27 percent didn't know if their physicians took those measurements.
The findings were presented during the annual Digestive Diseases Week conference in Washington.
Hepatitis B Patient Survey: Disease Understanding and Compliance in the United States
S.H. Han1; L. Griffith2; T. Westphalen3
1UCLA School of Medicine, Los Angeles, CA, USA; 2Idenix Pharmaceuticals, Cambridge, MA, USA; 3Novartis Pharma AG, Basel, Switzerland
The results of this survey highlight a significant deficiency in patient understanding of HBV infection, treatment goals, testing and behaviors. Enhanced education is needed to improve patient involvement in disease management decisions, which can lead to improved adherence and clinical outcomes.
-- Although most patients correctly understand how HBV is transmitted, common myths regarding transmission persist
-- Discussion and alignment of treatment goals between physicians and patients is not universal
-- Awareness and tracking of results of clinical tests is uncommon among patients
-- Many patients miss a dose or do not take their medication at the right time due to forgetfulness or product specific requirements such as injection or food restrictions
-- Medication adherence could be improved by educating patients about the importance of adherence for the treatment of chronic hepatitis B and by prescribing medications that better fit patients' existing life routines
Chronic hepatitis B (CHB) infection requires patients to undergo lifelong disease monitoring and evaluation. Their knowledge and expectations about the disease and compliance with prescription medication instructions can impact long-term clinical outcomes.
This survey was designed to assess the level of understanding about hepatitis B virus (HBV) infection and treatment of currently treated patients in the United States.
Fieldwork was conducted between September and November 2006.
Interviews with adult mono-infected CHB patients currently on antiviral treatment were conducted via internet and telephone.
-- The majority of study participants were recruited directly through online consumer research panels.
Qualification for participation in the survey required respondents to have been:
-- Diagnosed with CHB by their physician, and for at least 6 months
-- Currently 18 years of age or older
-- Currently taking antiviral CHB medication
Recruitment quotas for ethnic origin were utilized to better project data to the total US CHB patient population.
Data from 301 US patients with chronic hepatitis B were collected during the course of the fieldwork (Table 1).
The majority of respondents were currently taking either adefovir dipivoxil or lamivudine for their CHB (Table 2).
Table 1: Patient Sample Demographics
51% are from the USA, 29% from Mid-Atlantic area, 36% from Pacific area, 11% from South Atlantic area, 8% from East North Central. 55% 31-50 yrs old, 26% 51+ yrs. 54% male. 30% White, 29% Asian, 8% Latino, 12% African-American.
Table 2: Medication Usage
32% were currently taking adefovir, 29% lamivudine, 15% interferon a-2b, 11% entecavir, 9& pegasys, 5% Tenofivir. % Ever Taken: 39% adefovir, 40% lamivudine, 22% interferon a-2b, 14% entecavir, 13% Pegasys, 8% tenofovir, 13% can't remember.
Perceptions Regarding Transmission of the Hepatitis B Virus
When questioned about transmission, most respondents correctly identified the main sources of hepatitis B virus transmission.
However, 36% of respondents believed the virus could be transmitted by sharing utensils with an infected person and 9% believed that social contact, such as a handshake could be responsible for the spread of HBV (Table 3).
The majority of patients (80%) are aware of the long-term consequences of hepatitis B (Table 4).
A total of 50% of patients surveyed believe that hepatitis B can currently be cured. Of these, 24% expected to be taking prescription medication for life/indefinitely (Table 5).
Overall, 37% of respondents indicated they had not yet discussed treatment goals with their physician.
- Of patients who had not discussed goals with their physicians, 89% felt that it would have been important for them to have had such a conversation
A total of 29% of patients have set their own personal goals regarding treatment of their CHB either in addition to or in the absence of physician-directed treatment goals.
- 71% of patients with their own personal treatment goals have communicated them to their physician
Treatment goals communicated by the physician tend to be centered around disease control and obtaining better test results while patient goals focus more on achieving a cure and lifestyle change along with medication compliance (Table 6).
- For those patients who have discussed treatment goals with their doctor, a top goal of treatment communicated by the doctor was reducing viral load (29%), however this was not as important to patients in their personal goals of treatment (7%).
Almost all (96%) patients with physician-originated treatment goals believe they were clearly communicated by their doctor.
A quarter to a half of patients know their most recent test results or track their test scores over time.
Awareness of HBV Clinical Tests
69% (208/301) of patients could not name any specific test conducted to monitor their chronic HBV infection.
- When presented with a list of specific names, more than half of the patient respondents still did not recognize tests commonly used in the monitoring of chronic HBV disease (Table 7).
About half of HBV patients who are aware of specific tests for HBV were not sure of what the tests actually measure (Table 8).
- Of patients who were aware of the HBV DNA viral load test, an important marker in determining treatment success, 43% did not know what it measured
Only about half of patients who are aware of specific tests for HBV know their most recent test results (Table 9).
A total of 36% of all patients in the survey keep track of CHB test results over time (Table 9).
After being told that viral load measures the amount of hepatitis B virus in the blood, a majority of patients (85%) claimed that viral load measurement is important, but 27% didn't know whether their doctors checked their viral load.
Adherence With Chronic HBV Medication
When questioned about adherence with chronic HBV medication, 38% of patients admit to missing doses or not taking a dose on time at least once per month.
The primary reason stated by patients for missing doses or not taking a dose on time was forgetfulness, while injection and food restrictions each affected approximately 6% of patients (Table 10).
- Additionally, 9% of patients believe that missing one or two doses of medication doesn't matter
49% of patient respondents believe that a requirement of taking a medication at least 2 hours before or after eating would make adherence more difficult than if the drug could be taken at any time.
- Currently, 80% of respondents take their HBV medication within 2 hours of eating