The impact of biopsychosocial factors on quality of life: women with primary biliary cirrhosis on waiting list and post liver transplantation.

OBJECTIVES: Primary biliary cirrhosis (PBC) is the second most common reason for liver transplants among women in the USA. While survival rates are high, there is evidence of persistent problems post-transplant. This study aimed to identify significant contributors to quality of life (QOL) for women with PBC on waiting list (WL) and post-transplant (PT) and compare QOL in each group with US population norms. DESIGN: A cross-sectional, two-group study design was used. METHODS: WL and PT participants were recruited through medical centres and on-line. QOL was measured by the Short Form-36 and an indicator of Social QOL created for this study. A biopsychosocial model incorporating demographic, biomedical, psychological, and sociological factors guided choice of variables affecting QOL. Analyses examined (1) all factors for differences between WL and PT groups, (2) association between factors and QOL outcomes within each group, (3) multivariate regression of QOL on factors in the model for the sample as a whole, and (4) comparison of QOL outcomes with national norms. RESULTS: One hundred women with PBC participated in the study, 25 on WL and 75 PT. Group comparisons showed improvement for PT participants in most biomedical and psychological variables and in QOL outcomes. QOL was related to many, but not all, of the variables in the model. In multivariate analysis, Fatigue, Depression, Coping, and Education - but not Transplant Status - were identified as indicators of QOL. Physical QOL improved significantly after 5 years PT, when it was no longer worse than national norms. Mental QOL remained worse than national norms despite distance in time from transplant. CONCLUSIONS: The model proved useful in identifying a range of factors that contributed to QOL for women with PBC before and after transplant. Recommendations were made for clinical practice to improve QOL through a combination of treatment and self-management.

Uncertainty and liver transplantation: women with primary biliary cirrhosis before and after transplant.

Uncertainty is a frequent feature of chronic illness and can have a particularly important impact in the case of organ transplantation. This study of 100 women with primary biliary cirrhosis who were either waiting for or had already had a liver transplant focused on both changes in uncertainty with transplant and the correlates of uncertainty both pre- and post-transplant. While those who were post-transplant had significantly lower uncertainty scores (measured by the Mishel Uncertainty in Illness Scale-Adult Version-MUIS-A) than those on the waiting list, uncertainty was still persistent and associated with a reduced quality of life. The most significant factors in relation to uncertainty were fatigue, depression, anxiety, and dissatisfaction with medical information received. It is important for both patients and transplant team members to recognize the impact of uncertainty on a patient's well-being, both before and after a transplant, and to address the underlying factors that continue to compromise quality of life even after a life-saving procedure.

Fatigue as a major predictor of quality of life in women with autoimmune liver disease: the case of primary biliary cirrhosis.

OBJECTIVES: Fatigue is a nearly universal symptom of many chronic diseases, yet it is often poorly understood and underappreciated as a factor in quality of life (QOL). Generally, clinicians have relied on subjective measures of fatigue, if they consider it at all. This study uses well-validated instruments to examine fatigue as a predictor of QOL in women with primary biliary cirrhosis (PBC), an autoimmune, chronic liver disease. METHODS: Eighty-one women with PBC completed a survey that included measures of fatigue (Fatigue Impact Scale) and QOL (SF-36) as well as demographic variables (age, education) and medical information (symptoms, stage of illness, time since diagnosis). QOL results for the sample were compared with those of a nationally normed U.S. population. Bivariate and multivariate analyses were conducted to identify contributors to variation in QOL. RESULTS: Compared with national norms, QOL for this PBC population was significantly impaired. When all variables with bivariate significance in relation to QOL were included in multivariate analyses, results showed fatigue to be the primary predictor of QOL, including all 8 QOL scales and the 2 summary scales. Regression results, dominated by fatigue, explain 25-59% of the variance in QOL. CONCLUSIONS: Fatigue has profound effects on every aspect of life for women with PBC-physical, social, emotional, and psychological. The results lead to recommendations for health care providers to assess fatigue in their patients with PBC and to take steps, where warranted, to mitigate its effects.

Seasonal patterns of fatal and nonfatal falls among older adults in the U.S.

INTRODUCTION: While many believe that older adults fall more often during the winter months, research on this is inconclusive. This study used nationally representative data from 2001 to 2002 to examine unintentional fatal fall rates among older men and women by season and climate, and nonfatal fall rates by season. METHODS: We studied fatal and nonfatal unintentional falls among U.S. adults aged > or =65 during December 2001-November 2002 by season. Fatal fall data were obtained from National Center for Health Statistics' annual mortality tapes; nonfatal fall data for injuries treated in emergency departments were obtained from the National Electronic Injury Surveillance System All Injury Program. Fatal falls were also analyzed by climate based on each state's average January 1, 2001 temperature (colder climates < or =32 degrees F (0 degrees C) and warmer climates >32 degrees F (0 degrees C)). RESULTS: From December 2001 through November 2002, neither fatal nor nonfatal fall injury rates showed any seasonal patterns. For fatal falls, the average rate was 9.1 percent higher in colder climates, regardless of season. CONCLUSION: Among older adults, fatal fall rates appear to be influenced more by climate than by season. Additional research is needed to clarify the mechanisms underlying these observations.

Reputationally strong HIV prevention programs: lessons from the front line.

Although HIV prevention researchers have conducted numerous controlled outcome studies to evaluate the effectiveness of theory-based interventions aimed at reducing HIV risk behaviors, many HIV risk reduction interventions are conducted not by researchers but by staff in local health departments or community-based organizations (CBOs). Despite their widely recognized role in slowing the spread of HIV, very few attempts have been geared toward understanding the programmatic and organizational characteristics of their HIV prevention efforts. The Centers for Disease Control and Prevention's Characteristics of Reputationally Strong Programs project identified and profiled 18 innovative, community-based, HIV prevention programs viewed by community partners as successful. The aim was to determine common features of the programs that could be widely applied to improve HIV prevention research and programs. Results indicated that several common intervention characteristics and organizational characteristics, including agency support and staff commitment, played significant roles in the success of reputationally strong programs.

The role of an online community for people with a rare disease: content analysis of messages posted on a primary biliary cirrhosis mailinglist.

BACKGROUND: This study focuses on the role of an Internet-based group for people who have an autoimmune liver disease, primary biliary cirrhosis. Primary biliary cirrhosis is a relatively rare disease, affects primarily women in their 40's and older, and is not well understood. The PBCers Organization (PBC stands for primary biliary cirrhosis) provides electronic mailinglists (listservs) and informational resources for those with primary biliary cirrhosis. OBJECTIVES: (1) to identify the issues of greatest importance to those posting to the listserv, specifically the relative importance of biomedical, socioemotional, and organizational/systems messages; (2) to compare frequency and content of posts by people at different stages of disease; (3) to identify how people with primary biliary cirrhosis represent the psychosocial challenges and dilemmas (role and identity change, uncertainty, and stigma) identified in the social-scientific literature as key elements of the experience of chronic disease. METHODS: The paper is based on content analysis of messages posted during two months to the Daily Digest listserv for people who have primary biliary cirrhosis. To analyze the posts, we developed a coding system with three major categories--biomedical, socioemotional, and systems/organizations--and 12 codes in each category. RESULTS: A total of 275 people posted 710 messages. Of the 250 people for whom information on gender was available, 239 (95.6%) were women and 11 (4.4%) were men. Analysis of 710 messages posted to the listserv revealed a predominance of requests for and reports of biomedical information, such as health care providers (32.7%), medications (30.9%), tests and procedures (25.8%), and symptoms (25.7%), combined with very frequent expressions of emotional support. The most frequent single topics were peer support (included in 40.6% of all posts) and positive emotions (25.3%). Posters who reported fewer years since diagnosis were more likely to be seeking biomedical information than those who were further in time from their diagnosis (r= -.241, P<.001, n=313). Those in later stages posted an average of 3.87 messages, compared to an average of 2.64 for people in earlier stages (t= 1.786, P=.08, n=90), which is different from what we expected. No relation between years since diagnosis or age and number of messages was found. Contrary to our expectations, the topics reflecting issues of role change/identity (2.9%), stigma (0.7%), and thoughts about the future (3.9%), all identified in social-scientific literature as key concerns for people with chronic illness, appeared infrequently in this set of messages. CONCLUSIONS: Messages exchanged on this particular mailing list have a biomedical, rather than socioemotional or organizational, emphasis. The Internet offers a highly valued opportunity for those with rare diseases to connect with, learn from, and provide support to others having similar experiences. Research that compares those with primary biliary cirrhosis, who are involved in an Internet support group and those who are not, would be an important next step to better understanding the role of the Internet among patients with chronic liver disease and the implications of it in the course of their illness.