An internet-based intervention to improve psychosocial outcomes in heart transplant recipients and family caregivers: development and evaluation.

BACKGROUND: Although quality of life (QOL) is generally improved by heart transplantation, medical noncompliance and mental health and QOL limitations often emerge and persist. Transplant teams' ability to address these issues is hampered because many patients reside long distances from the transplant program. We therefore conducted the first empirical evaluation of an internet-based psychosocial intervention for heart recipients and their families. METHODS: Based on focus group work and previous research, a multifaceted web-based intervention was developed with stress and medical regimen management workshops; monitored discussion groups; access to electronic communication with the transplant team; and information on transplant-related health issues. Intervention effectiveness was evaluated with 20 patients and family caregivers who used the website for 4 months (plus usual clinical care). Pre- and post-intervention assessments of mental health, QOL and medical compliance were performed. Comparison groups of 40 patients and their caregivers who received only usual care were similarly assessed. RESULTS: Relative to the comparison groups, intervention patients' depressive and anxiety symptoms, and caregivers' anxiety and hostility symptoms declined significantly (P < 0.05). QOL in social functioning significantly improved. Mental health and QOL benefits were greater among more frequent users of the website. Overall, intervention patients' medical compliance did not change. However, the sub-group using the website's medical regimen workshop showed significantly better compliance at follow-up than all other patients in attending clinic appointments, completing blood work and following diet. CONCLUSIONS: These preliminary findings suggest that a web-based intervention could have a vital role in follow-up care and in patients' and families' adjustment to heart transplantation.

Attrition of potential bone marrow donors at two key decision points leading to donation.

BACKGROUND: The National Marrow Donor Program (NMDP) has had remarkable success at recruiting potential bone marrow donors and recently has become increasingly focused on the retention of registered volunteers. This study extends the authors' work examining factors associated with attrition from the registry. Its goal was to determine which characteristics from six psychosocial domains were associated with attrition at two key stages leading to donation. METHODS: Questionnaires were mailed to potential donors after they were contacted as a potential match and had decided whether or not to continue toward donation. Our final sample included 1,727 volunteers who decided to continue with typing at the DR stage and 195 volunteers who decided to continue at the confirmatory typing (CT) stage as well as 179 and 169 individuals, respectively, who declined further participation in the registry at DR and CT stages. RESULTS: Bivariate analyses indicated that multiple factors in all six domains (demographics, volunteer-related, general psychosocial, recruitment-related, donation-related, and contact with center staff) were associated with discontinued registry participation. Logistic regression indicated that unique associations were concentrated in volunteer-related, donation-related, and contact with center domains. CONCLUSIONS: Findings suggested that intrinsic commitment to donation, more realistic expectations, fewer medical concerns, and greater contact with the donor center were all associated with lower attrition. Possible interventions to reduce attrition are discussed.

The association of donor center characteristics with attrition from the national marrow donor registry.

BACKGROUND: The National Marrow Donor Program (NMDP) has approximately 5 million registered potential donors and continues to add more than 30,000 new recruits to the registry monthly. However, more than 30% of potential donors are not available or decline to donate at key decision points in the donation process. Although previous researchers have examined the association of individual donor characteristics with attrition from the registry, no published studies have investigated the role of donor center characteristics or features of the donor centers' environment on attrition rates. METHODS: Donor center coordinators from 72 NMDP centers completed questionnaires that included items regarding donor center location and organization, recruitment strategies, and registry management. Center-specific registry composition data and attrition rates were gathered from the NMDP database. RESULTS: Analyses indicated that higher attrition was found at larger centers that needed more center staff and volunteers to deal with larger workloads and more DR-typing requests. Attrition was also higher among centers located in highly populated, urban environments, with larger minority and less stable populations. CONCLUSIONS: The results indicate that the NMDP may need to tailor donor center retention expectations to account for certain unchangeable characteristics (e.g., center size and population stability) and to develop internal strategies to address the unique characteristics of each donor center (e.g., current performance level or improvement needs).

Avoidant coping with health problems is related to poorer quality of life among lung transplant candidates.

CONTEXT: Lung transplant candidates face numerous health-related stressors. Although previous work has described the range of coping strategies candidates may use, whether those strategies are related to quality of life in physical functioning, emotional, and social domains has rarely been examined. METHODS: Adult lung transplant candidates (N = 128) participated in semistructured interviews that included questions regarding global and domain-specific quality of life and a multidimensional assessment of coping with health-related problems. Demographic characteristics, health status, and other psychosocial variables were also assessed, and their effects were examined and controlled in multivariate analyses of the coping-quality-of-life relationship. RESULTS: Respondents were most likely to use active, acceptance, and support-seeking strategies to cope with health problems. Self-blame or avoidance were rarely used. Although used least often, avoidant coping was the most strongly and consistently related to quality of life. With demographic and psychosocial variables controlled, higher avoidant coping remained associated with significantly poorer global quality of life, bodily pain, difficulty with daily work or activities as a function of emotional problems, and depressive symptomatology. Avoidant coping accentuated the association of poor health status and lower quality of life. Among respondents with lower health status, using more avoidant coping was associated with greater difficulty functioning in daily activities as a result of emotional problems. Those with higher health status had less difficulty functioning in daily activities as a result of emotional problems. CONCLUSIONS: Transplant team members are encouraged to be aware of and help patients refrain from using avoidant coping strategies.

Factors associated with ambivalence about bone marrow donation among newly recruited unrelated potential donors.

BACKGROUND: Previous research has indicated that feelings of ambivalence about donation are associated with donors' decisions not to donate and with less positive physical and psychosocial outcomes among donors who donated despite feeling ambivalent. The current study examines the prevalence of ambivalence among newly recruited potential bone marrow donors and identifies factors associated with greater ambivalence. METHODS: Using a cross-sectional design, questionnaires were mailed to a stratified random sample of individuals newly recruited to the National Marrow Donor Program registry at 71 local donor centers. A total of 426 new recruits (63%) completed and returned the questionnaire. RESULTS: Bivariate analyses indicated that multiple recruitment experience and donor perception variables were significantly associated with ambivalence. Multivariate analysis revealed that the following eight variables were uniquely associated with higher levels of ambivalence after adjusting for the effects of other key indicators: participating in other volunteer activities, joining at a drive for a specific patient, perceiving the recruitment staff as less informative, being discouraged from joining by others, not having an intrinsic commitment to donate, being encouraged by one's culture or religion to join, believing there are risks to donation, and having a greater number of medical, work, and family concerns about donation. CONCLUSIONS: Potential donors who are motivated by an intrinsic commitment to donate, rather than extrinsic pressure, are less ambivalent about donating. In addition, recruitment staff have a potentially critical role in reducing ambivalence among new recruits by providing information that may allay any unrealistic concerns recruits may have about the medical risks and impact of donation on work and family.