"Am I going to die" I have no future." "I feel depressed at times, fearful I may not see my children marry or be a grandparent." Such heart-rending statements from patients with chronic hepatitis B reveal the social and mental impact of this disease, which affects 350 million worldwide.
In a new study, UCLA researchers measured the effect of hepatitis B on patients' quality of life -- beyond just the physical symptoms of the disease -- and created a new tool to better assess patients' overall well-being, which may help clinicians guide treatment. The study appears in the July issue of the journal Hepatology.
"Our results revealed that to effectively treat hepatitis B patients, clinicians need to consider the social and psychological impact of the disease, as well as biological functioning," said Dr. Brennan M.R. Spiegel, principal investigator and assistant professor of medicine at the David Geffen School of Medicine at UCLA and the Veterans Affairs Greater Los Angeles Healthcare System.
Hepatitis B is caused by a viral infection that can damage the liver and lead to chronic disease. It is contracted most often through contact with infected blood or bodily fluids.
According to Spiegel, little research had been done previously on quality-of-life issues for the majority of hepatitis B patients -- those who do not have advanced liver disease or, even rarer, end-stage complications.
In developing the first-of-its-kind assessment tool for patients, researchers reviewed existing literature, conducted a focus group with health experts and interviewed hepatitis patients. They then took the information and developed a patient questionnaire that clinicians could use to measure patients' quality of life.
"We were shocked to find that for many hepatitis B patients without advanced liver disease, the psychosocial impact of the disease affected their lives more than the physical symptoms," said Spiegel, who is also director of the UCLA/VA Center for Outcomes Research and Education. "No one had ever documented this before."
The questionnaire measures quality of life on several levels, including psychological well-being, anxiety, vitality, disease stigma, vulnerability and transmissibility.
"We hope that this quick questionnaire can become a 'vital sign' taken in the doctor's office to help see how the patient is doing," added Spiegel.
Spiegel notes that the questionnaire could also be used in clinical trials to help measure outcomes and also to equip patients with knowledge to help them better select between competing disease management strategies.
The study was funded by the pharmaceutical company Novartis. Spiegel is a consultant for Novartis and has received research support form the company.
Other study authors from the David Geffen School of Medicine at UCLA include Roger Bolus, Ph.D., Dr. Eric Esrailian and Jennifer Talley, also of the UCLA/VA Center for Outcomes Research and Education; Dr. Steven Han, also of the VA Greater Los Angeles Healthcare System; Dr. Myron Tong; and Dr. Francisco Durazo.
Other authors include Dr. Tram Tran, Cedars-Sinai Medical Center; Jason Smith, Pharm.D., VA Greater Los Angeles Healthcare System; Dr. Hetal A. Karsan, Atlanta Gastroenterology Associates and Emory University School of Medicine; Dr. Bruce Bacon, Center for Liver Diseases at Inova Faifax Hospital in Virginia; Dr. Paul Martin, Emory University School of Medicine; Dr. Zobair Younossi, Center for Liver Diseases at Inova Fairfax Hospital; Siew Hwa-Ong, Novartis Pharma AG in Basel, Switzerland; and Dr. Fasiha Kanwal, St. Louis University.