Changing lives, dynamic plans: Prospective assessment of 12-month changes in pregnancy timing intentions and personal circumstances using data from HER Salt Lake.

OBJECTIVES: To explore the association between changes in personal circumstances and shifts in pregnancy intentions. STUDY DESIGN: New start contraceptive clients, who desired to prevent pregnancy for at least one year enrolled in the survey arm of the HER Salt Lake Contraceptive Initiative (September 2015 -March 2017) and responded to the question "What are your future pregnancy plans?" at enrollment and 12-month follow-up. We estimated multivariable binary logistic fixed-effects regressions to examine the association between changes in personal circumstances and a change from never desiring a pregnancy at enrollment to considering one in the future at 12-month follow-up. RESULTS: The majority of the 2825 participants (2246, 79%) maintained their pregnancy timing intention over the 12-month study period. Multivariable analyses of the 208 participants who changed from never desiring a pregnancy to considering pregnancy in the future at 12-month follow-up indicated that entering cohabitation (aOR 3.14, 95% CI 1.30-7.58), increased household income (aOR 1.06, 95% CI 1.00-1.13), and changes from unemployment to full-time employment (aOR 5.94, 95% CI 1.29-27.36) are associated with increased the odds of desiring a future pregnancy after never wanting one a year prior. CONCLUSIONS: Pregnancy intentions are dynamic over twelve months and covary with partner status, household income, and employment status. Pregnancy intentions are linked to changes in life circumstances. Health care providers need to frequently assess pregnancy intentions and resulting contraceptive or preconception needs.

Factors associated with attrition from a national bone marrow registry.

During its 10-year existence, the National Marrow Donor Program (NMDP) has been extremely successful at recruiting potential bone marrow donors to join the volunteer registry. Due in part to successful recruitment and the longevity of the registry, the focus of the NMDP has now shifted to decreasing potential attrition when volunteers are recontacted for additional testing to determine whether they would be the optimal donor for a specific patient. Our own interest in the bone marrow donation process led us to examine four domains of variables - demographic characteristics, volunteer history, recruitment-related characteristics and donation-related concerns - that we hypothesized would be associated with increased likelihood of donor attrition at a key donor decision-point (DR-stage blood typing). Questionnaires were mailed to potential donors after they were contacted at the DR-stage, and had made the decision of whether or not to continue with blood typing. Our final sample included 756 volunteers who decided to continue with typing, and 258 individuals who declined further participation in the registry. In the bivariate analyses, factors in three of the four domains (all except demographic characteristics) were found to be substantially correlated with likelihood of attrition. Logistic regression indicated that nine central variables across the three domains produced the majority of increased attrition likelihood. Finally, a dose-response analysis suggested that as the number of attrition-related factors endorsed by an individual increased, his/her likelihood of dropping out of the registry also increased. Implications for future research and interventions to reduce potential donor attrition are discussed.

Temporal profiles of physical health in family members of heart transplant recipients: predictors of health change during caregiving.

This study examined patterns of change in the physical health and well-being of 133 family caregivers to heart transplant recipients during the 1st year after transplant. Caregivers were assessed at 2, 7, and 12 months after transplant. Cluster analysis was used to identify temporal profiles reflecting unique patterns of change in the direction and nature of caregivers' physical health; their temporal profiles showed either (a) a worsening of general medical condition, with weight gain (14% of the sample); (b) worsening medical condition with weight loss (15%); (c) weight gain with stable medical condition (41%); (d) weight loss with slightly improving medical condition (21%); or (e) worsening health perceptions with relatively little objective evidence of change in medical condition or weight (8%). Subsequent multivariate analyses indicated that caregiver characteristics measured at baseline and reflecting caregiving burden, coping styles, demographics, and health history reliably predicted membership in the pattern-of-health-change groups. Among the findings, caregivers who showed a pattern of medical decline with weight loss had a poorer health history and weaker coping styles (lower mastery and higher use of avoidance coping) than other caregivers. Caregivers who experienced medical decline with weight gain had the greatest levels of caregiver burden. These findings are relevant to the design of interventions to maximize not only caregivers' health, but the health of the family members for whom they provide care.

The effects of bereavement on adult sibling bone marrow donors' psychological well-being and reactions to donation.

As living organ, tissue, and bone marrow donation become increasingly prevalent treatments for a variety of diseases, better understanding of living donors' experiences, especially when the recipient does not survive after the transplant, also becomes more critical. Although some psychological outcome data exist concerning living donation, there have been no systematic prospective investigations, to date, of the psychological impact of bereavement among sibling bone marrow donors. Studies of bereavement effects in other donation settings such as unrelated bone marrow donation and related kidney donation, suggest that bereavement may have a significant impact on donors' reactions. The present investigation studied a panel of sibling bone marrow donors at three key points in the donation process in order to (1) examine donor psychological well-being across time, and (2) investigate the effect of the sibling recipient's death on donor well-being. We surveyed sibling donors by mail 1-2 weeks prior to donation, 1-2 weeks following donation, and again 1 year after their donation. In general, all donors reported high levels of predonation self-esteem, mastery, happiness and life satisfaction. As might be expected, bereaved donors felt less as if their donation had really helped their sibling as time passed. However, despite such donation-specific perceptions, bereaved donors experienced global psychological gains following bereavement including enhanced self-esteem, happiness, and life satisfaction compared to donors whose siblings were still living. These findings suggest that physicians and mental health practitioners should monitor donors' psychological well-being for extended periods post-donation, and should consider clinical interventions for bereaved and nonbereaved sibling donors.

Understanding donors' motivations: a study of unrelated bone marrow donors.

Medical advances in bone marrow transplantation techniques and immunosuppressive medications have dramatically increased the number of such transplants performed each year, and consequently, the demand for bone marrow from unrelated donors. Although physiological aspects of bone marrow donation have been thoroughly investigated, very few studies have examined psychosocial factors that may impact individuals' donation decisions and outcomes. To examine one particular set of donor psychosocial issues, this study investigated motives for bone marrow donation among 343 unrelated bone marrow donors who donated through the National Marrow Donor Program. Six distinct types of donor motives were identified from open-ended questionnaire responses. Donors most frequently reported motives reflecting some awareness of both the costs (to themselves) and potential benefits (to themselves and the recipient) of donation. A desire to act in accordance with social or religious precepts, expected positive feelings about donating, empathy for the recipient, and the simple desire to help another person were also commonly cited reasons for donating. Among a series of donor background characteristics, donors' gender was the variable most strongly associated with motive type; women were most likely to cite expected positive feelings, empathy, and the desire to help someone. Central study findings indicated that donor motives predicted donors reactions to donation even after the effects of donor background characteristics (including gender) were controlled. Donors who reported exchange motives (weighing costs and benefits) and donors who reported simple (or idealized) helping motives experienced the donation as less positive in terms of higher predonation ambivalence and negative postdonation psychological reactions than did remaining donors. Donors who reported positive feeling and empathy motives had the most positive donation reactions in terms of lower ambivalence, and feeling like better persons postdonation. These finding add substantially to the body of work concerning medical volunteerism generally, and also have important practical implications for the recruitment and education of potential bone marrow donors.

Prevalence and predictors of depression and anxiety-related disorders during the year after heart transplantation.

This study longitudinally evaluates prevalence, clinical characteristics, and risk factors for DSM-III-R Major Depression, Generalized Anxiety Disorder (GAD), associated Adjustment Disorders, and Post-Traumatic Stress Disorder related to the transplant (PTSD-T) in a large, representative sample of heart recipients followed during the first year after transplantation. Lifetime pretransplant prevalence as well as 1-year posttransplant rates were determined for the 154 recipients via standardized clinical interview schedules. Major Depression was the most prevalent disorder posttransplant (1- year rate of 17.3%), followed by PTSD-T (13.7%), and Adjustment Disorders (10.0%). There were no cases of GAD. Specific pretransplant and perioperative factors increased recipients' risk for any psychiatric disorder (vs none) posttransplant, including pretransplant psychiatric history; poor social supports from primary family caregiver, other relatives, and friends; the use of avoidance coping strategies for managing health problems; and low self-esteem early posttransplant. Within diagnostic groups, additional risk factors distinguished recipients with anxiety-related vs depressive disorders posttransplant: those at highest relative risk for anxiety had waited more briefly for a donor heart, were more likely to have a family psychiatric history, had the poorest family and friend support of all recipients, utilized the poorest coping skills, and had a poor sense of mastery. The findings have implications for the development of primary and secondary prevention strategies for psychiatric disorder in heart recipient populations.

Gender differences in patterns of emotional distress following heart transplantation.

The study provides the first empirical evaluation of gender differences in psychological symptomatology and DSM-III-R major depressive disorder (MDD) across the first year following heart transplantation. An important goal was to identify physical health-related and psychosocial factors that could account for, or mediate, any association between gender and psychological distress. The sample for the present analyses was drawn from a larger cohort of 172 heart recipients and included all 28 women in the cohort plus 118 men who were matched demographically with the group of women. Detailed patient assessments were completed at 2, 7, and 12 months posttransplant. As expected, women's symptom levels were consistently higher than men's. However, while men's symptom levels in all areas declined with time posttransplant, women's distress in the area of depression initially improved but then worsened by the 12-month assessment. The distribution of episodes of MDD showed a temporal pattern of gender differences similar to that of depressive symptoms. The most important mediators of the gender-depression relationship were factors related to early posttransplant daily functional limitations: women reported more impairments in daily activities. Higher levels of such impairments, in turn, predicted subsequently higher depression levels by 12 months posttransplant. Several additional variables pertaining to transplant-related concerns and a low sense of personal mastery-while not serving as mediators-exerted their own independent effects on 12-month depression levels. The findings are relevant to the tailoring of educational and clinical interventions to the individual needs of women and men who receive heart transplants.

Psychosocial predictors of vulnerability to distress in the year following heart transplantation.

This study examines psychological symptomatology in a cohort of 72 heart transplant recipients followed longitudinally during their first year post-transplant. In keeping with research on other domains of life stressors and illnesses, a central study goal was to identify pre-transplant and perioperative psychosocial factors associated with increased vulnerability to, and maintenance of, elevated psychological distress levels post-transplant. Average anxiety and depression levels, but not anger-hostility symptoms, were substantially elevated in the early post-transplant period, relative to normative data. Average symptom levels improved significantly over time, although one-third of the sample continued to have high distress levels at all follow-up assessments. Recipients with any of seven psychosocial characteristics at initial interview were particularly susceptible to continued high average distress levels over time: a personal history of psychiatric disorder prior to transplant; younger age; lower social support from their primary family caregiver; exposure to recent major life events involving loss; poor self-esteem; a poor sense of mastery; and use of avoidance coping strategies to manage health problems. Recipients without such factors showed improvement in average distress levels across the assessment period. These effects were stronger for anxiety than depressive symptoms, with the exception of a sizeable relationship between loss events and subsequent depression. The findings suggest that clinical interventions designed to minimize prolonged emotional distress post-transplant need to be closely tailored to heart recipients' initial psychosocial assets and liabilities.

The self-image of unrelated bone marrow donors.

This study investigated the self-image of individuals who donate bone marrow to strangers as part of the National Marrow Donor Program. Quantitative surveys were administered to donors before donating (N = 849), shortly after donating (N = 754), and a year after donating (N = 370). In addition, 52 donors were interviewed in-depth by telephone at the same three points in time. Many of these donors felt that by donating bone marrow they were actualizing a central trait in their identity. Thus, many donors believed that they were distinct from others in the centrality of the traits of helpfulness and generosity to their identities. This belief often stemmed from a strong emphasis on helping in their families of origin. Other qualities activated by donation included religious identity, being a helping professional, and desire to be a role model. Self-evaluation appeared to have been enhanced for some donors due to the donation.

Experiences of the first 493 unrelated marrow donors in the National Marrow Donor Program.

More than 410,000 people participated in the National Marrow Donor Program (NMDP) as of October 1, 1991, and more than 850 volunteers had donated marrow. While the incidence of serious morbidity as a result of bone marrow donation is rare, the incidence of lesser complications and the long-term consequences of marrow donation are not known. To determine the incidence of donor complications and measure the recovery time of volunteer, unrelated marrow donors, we analyzed the results of surveys of the first 493 persons who donated marrow through the NMDP. The marrows were collected at 42 centers. The median age of the donors was 37.9 years (range 19.1 to 55.6 years). The median volume of marrow collected was 1,050 mL (range 180 to 2,983 mL). Autologous red blood cells were transfused to 89.8% (439) of donors but only 0.6% (3) of donors received allogeneic blood. Acute complications related to the collection procedure occurred in 5.9% of donors; but a serious complication, apnea during anesthesia, occurred in only one donor. When donors were questioned approximately 2 days following discharge from their hospitalization, most donors described symptoms related to the collection; 74.8% experienced tiredness, 67.8% experienced pain at the marrow collection site, and 51.6% of the donors experienced low back pain. Donors were surveyed repeatedly until they felt that they had recovered completely. Mean recovery time was 15.8 days; however, 42 (10%) donors felt that it took them > or = 30 days to recover fully. The duration of the marrow collection procedure and duration of anesthesia both positively correlated with donor pain and/or fatigue following the collection; but the duration of the collection procedure had the highest correlation with post-collection pain and fatigue. The volume of marrow collected per unit of donor weight was more weakly correlated with donor pain and/or fatigue than the anesthesia and collection times. When multivariate analysis was used to analyze the correlation between donor recovery time and these variables, only the duration of the collection was found to correlate significantly with donor recovery time (P = .001). This analysis demonstrates that marrow donation is well tolerated with few complications. To decrease further the incidence of donor discomfort and recovery time following donation, the duration of the collection procedure, and probably the duration of anesthesia, and the volume of marrow collected, should be kept to a minimum.

Psychosocial effects of unrelated bone marrow donation: experiences of the National Marrow Donor Program.

In this study, we investigated the psychosocial effects of unrelated marrow donation. Survey questionnaires were administered pre-donation, shortly post-donation, and 1 year post-donation to all donors through the National Marrow Donor Program over a 3-year period. Univariate, bivariate, and multivariate analyses were then performed. Donors were generally quite positive about the donation 1 year post-donation: 87% felt it was "very worthwhile" and 91% would be willing to donate again in the future. Marrow donors were more likely than kidney donors to feel better about themselves as a result of the donation (P < .001). Donors with longer collection times, in general, had less positive psychosocial outcomes from the donation. Donors who experienced lower back pain or difficulty walking as a result of the donation were more likely to experience the donation as more stressful and painful than expected, but no more likely to experience it as less positive emotionally than donors who did not experience these side effects.

When altruism fails: reactions of unrelated bone marrow donors when the recipient dies.

This article examines the responses of bone marrow donors to the death of the unrelated person to whom they donated. Data analyzed were 330 questionnaires and fifty in-depth interviews collected from donors in the National Marrow Donor Program at one year post-donation. Death of the recipient produced feelings of guilt and responsibility in the donors in only a few cases (2% of donors from questionnaire data and 2 of the 23 donors interviewed). Grief occurred often (22 of 23 donors interviewed) and was often surprisingly intense, given the fact that the recipient was a stranger. Intensity of grief varied depending on the perceived relationship with the recipient. Our data indicate that limiting contact and/or information about the recipient to the donor would be unlikely to result in more positive psychosocial outcomes. However, several strategies which might be useful in relieving donor guilt and/or grief are suggested.

Quality-of-life issues for end-stage renal disease patients.

Given the importance of making comparisons regarding quality-of-life issues for end-stage renal disease (ESRD) patients, the research presented here first compares 766 patients who experienced one of the following therapies for at least 1 year: (1) center hemodialysis, (2) continuous ambulatory peritoneal dialysis (CAPD), or (3) successful transplantation (one cohort of patients from the 1970s, a second cohort from 1980 to 1984). Second, since the most recent transplant group was randomized to two alternative immunosuppressive drug regimens, we compared the quality of life of the patients on cyclosporine/prednisone therapy (N = 51) and the patients on a conventional immunosuppressive therapy (antilymphocyte globulin/prednisone/azathioprine; N = 40). Patients had to be age 19 to 56 years and nondiabetic to be included in this research. Data were collected with survey questionnaires containing measures of physical, emotional, and social well-being, vocational rehabilitation, sexual adjustment, and marital and family adjustment. Case mix or background differences were controlled as much as possible using an analysis of covariance (ANCOVA) and comparison of adjusted means. Our results show that the successful transplant patients scored higher than both dialysis groups (P less than 0.05 for nine of 11 measures) on almost all variables, demonstrating a higher quality of life. The effect of a failed transplant on quality of life was also examined. In terms of the recent transplant patients, the cyclosporine group scored consistently higher on all physical, emotional, and social well-being measures (excluding males' vocational rehabilitation), although differences are not always significant.(ABSTRACT TRUNCATED AT 250 WORDS)

The advantage of multiple measures of quality of life.

The concept of "quality of life" is rich and multi-faceted. In the present paper, we argue that the very richness of the concept requires that we (a) evaluate multiple dimensions of quality of life in our studies and (b) include multi-item assessments of each dimension selected for study. Conceptual and psychometric advantages which accrue by using multiple measures are delineated. We discuss the way in which the use of multiple measures affects the selection of instruments, the source of information, and the mode of data collection. In addition, the application of multi-item assessments to the construction of health status indices is considered along with their use in health policy and cost-benefit analyses.

Quality of life and rehabilitation differences among four end-stage renal disease therapy groups.

This study investigates the quality of life of patients on alternative therapies for end-stage renal disease. The quality of life of 766 patients who experienced one of the following therapies for at least one year are compared: a successful transplant performed in the 1970's (N = 82), a successful transplant performed in 1980-1984 (N = 91), in-center hemodialysis (N = 83, 8 centers), and continuous ambulatory peritoneal dialyses (CAPD) (N = 510, 185 centers). All patients were aged 19-56 and nondiabetic. Survey questionnaires were administered containing measures of physical, emotional and social well-being, vocational rehabilitation, and sexual adjustment. Case-mix differences were controlled, insofar as possible, with an Analysis of Covariance; adjusted means were compared. Findings indicate that the quality of life for successful transplant patients exceeds that of both dialysis groups for almost all variables (p less than 0.05 for 9/11 measures). This advantage persists when transplant patients are compared to dialysis patients who have experienced no prior, failed therapies.

Quality of life after kidney transplantation. A prospective, randomized comparison of cyclosporine and conventional immunosuppressive therapy.

The aim of this research is to compare the quality of life after kidney transplantation for patients treated with cyclosporine versus conventional immunosuppressive therapy. This evaluation assumes particular importance given the high cost of cyclosporine, the resistance of the government to cover these costs, and the absence in some series (including this one) of significant differences in patient and kidney survival. This study is based on a randomized, stratified, prospective trial and concentrates on nondiabetic patients from ages 19 to 56 at 1-year posttransplant. Patients on cyclosporine show significant advantages in physical, emotional, and social well-being. Differences for 5 out of 10 indicators of quality of life were significant at the P less than or equal to .05 level. Significant differences are found on health satisfaction, happiness measures, indices of overall life satisfaction and well-being, perceived adjustment of the family, and female (not male) vocational rehabilitation. The fewer number of episodes of rejection and infection are, in part, responsible for these advantages in quality of life for cyclosporine patients.

The impact of cumulative change in early adolescence.

This article examines the impact of experiencing several major life transitions simultaneously in early adolescence. For many children, entry into the new life period of adolescence is marked by the transition from a relatively intimate elementary school setting into a more complex, impersonal junior high school environment. This major shift in organizational context is often accompanied by dramatic changes in biology and social definition. We hypothesized that transitions will be easier for children to cope with if the various adolescent changes come into focus at different stages rather than simultaneously. In a longitudinal study conducted in a large Midwestern city, schoolchildren were followed from sixth into seventh grade in 2 different types of school systems. The effect of multiple life changes (school transition, pubertal development, early dating behavior, residential mobility, family disruption) on students' self-esteem, academic grade-point average, and participation in extracurricular activities was analyzed. The results identify children who are forced to cope with several life transitions concurrently as a group at risk. Theoretical implications are discussed, with development of the notion that individuals need an "arena of comfort" in at least some spheres of their lives.