Attitudes toward hepatitis B virus among Vietnamese, Chinese and Korean Americans in the Houston area, Texas.

We explored attitudes about prevention, screening and treatment of hepatitis B virus (HBV) infection in Chinese, Korean and Vietnamese communities. We use qualitative methods in 12 focus groups (n = 113) of adults who self-reported their ethnicity to be Chinese, Korean, or Vietnamese. We use grounded theory (i.e., consensus-building between co-coders about recurring, emerging themes) for analysis. Diet, nutrition, fatigue and stress were misidentified as HBV causes. Improving hygiene, diet, exercise, and holistic methods were misidentified as viable HBV prevention methods. Common screening problems included not affording test and not understanding test results. Participants shared reasons for using complementary and alternative medicine--when Western medicine fails or becomes unaffordable. Participants sought information from medical providers and fellow community members, but also from the internet. Many of the attitudes and opinions that emerged may deter participation in HBV screening, prevention and treatment, insofar as community members may factor them into healthcare decision-making, choose alternative but ineffective methods of prevention and treatment, and undervalue the benefits of screening. More patient education in both traditional and new media is necessary for clarifying transmission, screening and treatment misunderstandings.

Late effects and healthcare needs of survivors of allogeneic stem cell transplantation: a qualitative study.

PURPOSE: This qualitative study of survivors of allogeneic stem cell transplantation (SCT) for haematological malignancy explored attitudes about late effects of therapy, healthcare issues and information needs. METHODS: We conducted 12 indepth cognitive interviews and three focus groups of patients who had previously had SCT and were without recurrence of their primary disease. We used grounded theory methods, where themes emerged from consensus between cocoders. Health-related quality of life was assessed with the short-form 36 (SF-36). RESULTS: The study included 22 patients (50% female; 95% white; mean age 47 years). The mean time from SCT was 5.2 years (±1.4 years). Most had low SF-36 scores. Participants discussed late effects of therapy, most commonly graft-versus-host disease, and how they impacted their quality of life. They reported frequent healthcare use and cancer screening after SCT and discussed problems affording care and interacting with insurance companies. Participants shared sources of health information (eg, preferring providers as their primary sources of information, but also learnt from websites, medical journals and peer experiences) and identified information barriers (eg, feeling 'on their own' insofar as they did not have targeted care for their needs), and expressed importance of anticipatory guidance regarding infertility. Overall, participants' personal issues and social influences impacted survivors' needs and attitudes. CONCLUSIONS: SCT survivors face continuing and lasting health effects. The factors impacting survivorship needs are complex and may be interrelated. Future research should study the affect of incorporating personal and social issues into existing clinical SCT programmes on survivors' quality of life.

Medical care of hepatitis B among Asian American populations: perspectives from three provider groups.

BACKGROUND: Physicians can play a significant role in helping to decrease the hepatitis B virus (HBV) burden among Asian Americans. Few studies have described knowledge and practice patterns in the medical community among different provider types regarding HBV and liver cancer. OBJECTIVE: Our study explores the HBV beliefs, attitudes and practice patterns of medical providers serving Asian American communities. DESIGN: We conducted three focus groups with primary care providers, liver specialists, and other providers predominantly serving Asian American community. We asked about practices and barriers to appropriate medical care and outreach. PARTICIPANTS: We moderated three focus groups with 23 participants, 18 of whom completed and returned demographic surveys. Twelve were of Asian ethnicity and 13 spoke English as a second language. Only eight screened at least half of their patients, most (72%) using the hepatitis B surface antigen test. APPROACH: We used grounded theory methods to analyze focus group transcripts. RESULTS: Participants frequently discussed cultural and financial barriers to hepatitis care. They admitted reluctance to screen for HBV because patients might be unwilling or unable to afford treatment. Cultural differences were discussed most by primary care providers; best methods of outreach were discussed most by liver specialists; and alternative medicine was discussed most by acupuncturists and other providers. CONCLUSIONS: More resources are needed to lower financial barriers complicating HBV care and encourage providing guideline-recommended screenings. Other providers can help promote HBV screening and increase community and cultural awareness.

Disease and symptom burden in systemic sclerosis: a patient perspective.

OBJECTIVE: Studies of systemic sclerosis (SSc) have enlisted measures of physical function and generic health-related quality of life in order to determine health status. However, the measurements obtained may not discriminate other essential quality of life (QOL) domains important to patients with SSc. Our study used qualitative methods to evaluate patients' assessment of disease and symptom burden in SSc. METHODS: We conducted 3 focus groups and 5 in-depth interviews of patients with SSc. Guiding questions were based on 5 themes: patient awareness, SSc-related problems, disease activity and progression, symptoms, and expectations. Thematic analysis was conducted using qualitative, grounded theory methodologies. RESULTS: Symptoms such as pain (localized or generalized), fatigue, and malaise were reported to have major influence on daily activities and QOL. Gastrointestinal symptoms were among the worst prevalent and disruptive physical problems. All participants reported significant disruptions in their social lives, a burden considered by many as the worst consequence of their disease. All expressed major effects on their overall well-being because of emotional distress, including depression, low self-esteem, concerns with physical appearance, and uncertainty about future outcomes. CONCLUSION: Patients with SSc report significant symptomatic and emotional burdens, which, in turn, affect their QOL and psychological well-being. Additional research and fuller awareness of the disease and symptom-related burdens experienced by patients with SSc may lead to additional relevant outcome measures and more effective overall treatment programs.