Abstract
Background
Despite the fact that social support has been found to be important to cardiovascular health, there is a paucity of information regarding the relationship between social support and outcomes long-term after heart transplantation (HT).
Objectives
Thus, the purposes of our retrospective analyses of a prospective, longitudinal study were to examine (1) the relationship between satisfaction with social support and post HT health-related quality of life (HRQOL) and survival, and (2) whether two types of social support (emotional and tangible) were predictors of survival and HRQOL.
Methods
Data were collected from 555 HT patients over a 5-year period (78% male, 88% white, mean age=53.8 years at time of transplant) at 4 U.S. medical centers using the following instruments: Social Support Index, QOL Index, HT Stressor Scale, Jalowiec Coping Scale, and medical records review. Statistical analyses included t-tests, correlations, Kaplan-Meier survival actuarials, and linear and multivariable regression.
Results
Patients were very satisfied with overall social support from 5 to 10 years after HT (0=very satisfied, 1=very dissatisfied) which was stable across time (p = 0.74). Satisfaction with emotional social support (p = 0.53) and tangible social support (p = 0.61) also remained stable over time. When stratified into low, medium and high levels of satisfaction, satisfaction with social support was not related to survival (p = 0.24). At 5 years, overall satisfaction with social support was a predictor of HRQOL ( r2=.59, p<.0001), and satisfaction with emotional social support was a predictor of HRQOL at 10 years post HT ( r2=.66, p<.0001).
Conclusions
Patients were very satisfied over time with emotional and tangible social support. While social support explained QOL outcomes, it did not predict survival. Knowledge of relationships among social support, stress, and outcomes may assist clinicians to address social support needs and resources long-term after HT.
Keywords: Social support, heart transplantation, quality of life, survival
Introduction
Social support and its relationship to cardiovascular health has emerged as an important area of study in recent years.1–7 Yet, few studies have examined social support in patients who undergo heart transplantation.8–10 Several investigators have reported that prior to transplant, it is important for heart transplant candidates to identify availability of social support, given the stressfulness and complexities of the post transplant medical regimen.11,12 However, there are no studies which specifically describe social support or examine the influence of social support on post transplant outcomes, including long-term health-related quality of life (HRQOL) and survival. In fact, only three studies mentioning social support were found in the heart transplant literature. While these studies demonstrated the importance of social support in pre and post transplant patients, social support was not the main concept of study.8–10 In addition, the studies differed in sample size, measurement methods used, and time frames studied (pre and post transplant).
It is posited that types of social support play a role in health outcomes in populations of chronic illness patients. In heart failure and post cardiac surgical patients, emotional support has been found to be associated with better HRQOL outcomes while the importance of tangible support is less clear.13,14 Researchers have found that those patients who have access to social support and are satisfied with their social support may be able to handle stressful situations and cope more effectively.15–21 Emotional social support was found to positively impact HRQOL in patients with heart failure,2,13 yet have a negative association with HRQOL in other studies.22,23 In addition, emotional support was found to directly affect life satisfaction while tangible social support was not associated with satisfaction.14 Other disparate findings were reported regarding changes in social support over time in cardiac patients. Several researchers reported improvement in social support over time,2,3 while others noted a decline over time.24–,26 Conflicting results regarding the relationship between social support and QOL were reported in patients with cardiovascular disease. Several researchers reported that better social support was associated with better QOL outcomes,20,10,27 yet other researchers did not demonstrate this relationship.2,23,,28 Social support was found to be an independent risk factor for morbidity and mortality in cardiovascular disease29–33 while other studies reported no relationship between social support and survival.5,6 Grady and colleagues10 suggested the need for a more in-depth examination of social support as it relates to QOL in heart transplant patients.
For our report, we defined social support as the degree of perceived satisfaction with social support which is provided by others.21 Thus, satisfaction with social support involves the appraisal by an individual of his or her support as acceptable or satisfactory in times of need.22 Two types of social support were examined: emotional and tangible. Tangible support involves the provision of material support such as financial assistance.15,21 Perceived assistance with material needs such as finances for medication, transportation to clinic, and communication with the transplant team may play a role in social support for the transplant patient. Emotional support involves the provision of closeness, intimacy, and the ability to share feelings with someone., 21 The transplant journey is a complex one; perceived satisfaction of support persons who help with comforting and understanding of day to day experiences may play an important role in the life of a transplant patient.
The relationship between social support and outcomes in cardiovascular and other chronic illness populations suggests that social support is an important area of study in patients who have undergone heart transplantation. Therefore, the aims of this study were to examine (1) satisfaction with social support over time from 5 years to 10 years after heart transplantation, (2) relationships of satisfaction with social support with HRQOL and survival, and (3) if emotional and tangible social support are predictors of HRQOL. The works of James House15,21 and Lazarus and Folkman16 provided the theoretical underpinnings for examining satisfaction with social support, perceived stress, coping, HRQOL, and survival of patients long-term after heart transplantation. The two frameworks provided the conceptualization of social support, and the process of stress and coping, respectively, which guided the development of our study aims within the context of the lives of individuals living with heart transplantation.
Methods
Sample and Setting
As part of a larger prospective study of HRQOL outcomes, this retrospective analysis included a nonrandom sample consisting of 555 patients who underwent heart transplantation between July 1, 1990 and June 30, 1999 at four medical centers: University of Alabama at Birmingham (UAB), Rush University Medical Center, The Cleveland Clinic, and University of California, Los Angeles (UCLA). The pool of transplant patients from which our patients were recruited is described elsewhere10. The mean age of the sample was 54 years at the time of transplantation, 88% were Caucasian, and 78% were male. Patients were fairly well educated (mean=14 years), and most patients had private health insurance or Medicare. Study inclusion criteria were age ≥ 21 years, able to read and write English, and being physically able to participate. There were 55 deaths during the entire study period; and 16 deaths at 5 years, at the time of the multivariate analysis.
Instruments
Five self-report instruments were used in this report: Heart Transplant Social Support Index,34 Quality of Life Index,35 Jalowiec Coping Scale,36 the Heart Transplant Stressor Scale10, and the Heart Transplant Symptom Checklist.10 These instruments were selected because they address the major concepts of the study aims.
Heart Transplant Social Support Index
The Social Support Index (SSI) measures the structural aspects of the social support network, and satisfaction with support (emotional, tangible, and overall (1 = very satisfied to 4 = very dissatisfied).10 The SSI has 5 questions addressing emotional support and 10 questions addressing tangible support. The tool has two parts. Part A, assesses satisfaction with amount of help received fpr each of 15 illness-related tasks such as personal care, taking medications, and travel to the doctor’s office. Scale scores for Part A are obtained by calculating the mean level of satisfaction with support for each of the 5 emotional support questions and 10 tangible support questions. An example of a social support question is: Check all those people who help you take your medications when you’re at home, and If you do get help in this area, how satisfied are you with the help? A lower satisfaction score indicates greater satisfaction with support using a 0 to 1 scale with 0 = very satisfied and 1 = very dissatisfied. Therefore, patients with a score closer to 0 are more satisfied with social support. There are 2 answers that allow the subject to indicate that they “do not need help” or “need help but do not have it”. If a subject chooses either of those answers, the item is not scored and it is not included in the scale score calculation. An additional score can be obtained for the number of interpersonal supports, but it was not included in this study due to the more complex relationship between support quantity and outcomes. Part B, which was not used in this study, is descriptive and assesses the patient’s perception of the quality of the relationship with a spouse, and frequency of attendance at church, support groups, and social activities. The SSI has psychometric support in the heart transplant literature.34
Jalowiec Coping Scale
The Jalowiec Coping Scale (JCS) is a widely used instrument that examines the use and perceived effectiveness of 60 coping strategies. Patients are asked to rate their coping use and effectiveness based on the stresses of the illness at the current time. Patients rate the use and effectiveness of coping strategies on a 4-point Likert rating scale (0 = never used to 3 = often used) and (0 = not helpful to 3 = very helpful), respectively. This instrument has eight subscales: confrontive, evasive, optimistic, fatalistic, emotive, palliative, supportant, and self-reliant. These subscales are further categorized into positive and negative coping styles. Both mean use and effectiveness scores can be derived for each of the eight subscales.36 The possible range for raw scores for overall use and effectiveness are 0 to 180 and for subscales 0 to 39. The individualized adjusted scores for both use and effectiveness of coping strategies and for each subscale range from 0 to 3. Higher scores indicate more use of the coping strategy and more effectiveness of the coping strategy. Psychometric support of the JCS has been published in the literature.36–38
Quality of Life Index
The Quality of Life Index (QLI), by Ferrans and Powers39 has 35 items that measure satisfaction with (1 = very dissatisfied to 6 = very satisfied) and importance of (1 = very unimportant to 6 = important) different areas of life using a 6-point Likert scale. There are 4 subscales: health/functioning, socioeconomic, psychological, and significant others. Higher mean scores for each item, subscale, and the total scale scores indicate better satisfaction or more importance. This instrument has been widely used in the literature and has support for reliability and validity in several studies.24,39–40
Heart Transplant Stressor Scale
The 81-item Heart Transplant Stressor Scale (HTSS) measures the perceived stressfulness of the transplant experience.10 Patients check “yes” or “no” if they have a stressor. If they check “yes”, patients rate the stressfulness of the stressor on a Likert scale of 0 to 3, indicating not stressful to very stressful. The stressors are categorized into six subscales: physical, psychosocial, self-care, family, work/school/financial, and hospital/clinic. Scoring of this instrument involves summing the “yes” response ratings for all the items (entire instrument or within each subscale) and then dividing by the total score possible. The total score possible equals the total number of items with “yes” responses in the total tool or subscale multiplied by 3. A percentage score can be calculated by multiplying the aforementioned score by 100. Higher total and subscale scores indicate more perceived stressfulness. Psychometric support of this instrument has been reported previously.,41
Heart Transplant Symptom Checklist
The Heart Transplant Symptom Checklist37 consists of 91 items that measure symptom frequency (yes/no) and symptom distress (0 = not bothered at all to 3 = very bothered). The tool has 6 subscales: cardiopulmonary, gastrointestinal, neuromuscular, genitourinary, dermatologic, and psychologic. Psychometric support, published previously, demonstrated acceptable reliability, and content and construct validity.10
Clinical Data
Clinical data, including number of co-morbidities, transplant–related complications, and death, were accessed from two sources: the Cardiac Transplant Research Database (a large multi-site registry housed in Birmingham, Alabama) and medical records review.
Procedure
After Institutional Review Board approvals were obtained, nurse researchers at each site recruited patients who were ≥4.5 to 10 years post heart transplantation. The co-investigators and research coordinators explained the study to patients, encouraged them to ask questions, and obtained written informed consent. Patients were given a copy of the questionnaires with an addressed, stamped envelope, and were instructed to mail the questionnaires within two weeks. All subsequent questionnaires were mailed to the patients’ home biannually, according to the patient’s transplant date, two weeks before the due date. Patients completed questionnaires in approximately 1 to 1.5 hours for each time period. Patients enrolled in the study anytime between 4.5 to 10 years; therefore a patient could complete between 1 and 11 questionnaires.
Retention of participants was a high priority for the research team. If a questionnaire was not returned, study participants were telephoned weekly for 2 weeks and sent a letter if the questionnaire was not returned within one month of its due date. Patients were compensated with $10 for each returned booklet of questionnaires to acknowledge their participation in our research. The study had a 70% retention rate.
Analysis
The data for the current study were analyzed using descriptive, correlational, and inferential statistics. The SAS Software Version 9.2 (SAS Institute, Inc., Cary, NC) was used for data analysis. A p-value of ≤0.05 was considered statistically significant. Descriptive and inferential statistics including means, standard deviations, frequencies, and percentages which were used to examine relationships among perceived satisfaction with social support, and QOL over time for patients 5 to 10 years after heart transplantation. The relationship between two types of social support (tangible and emotional), and QOL in survivors 5 to 10 years after heart transplantation were examined using Pearson correlations. Univariate and multiple regressions were used to determine which type of social support (tangible or emotional) was a significant predictor of HRQOL. Variables entered into the multiple regression model included: 1) sociodemographic variables (i.e., age, gender, race, marital status, and education); 2) clinical variables (i.e., NYHA class, readmissions, rejection, infection, malignancy, coronary artery disease, and co-morbidities [cardiac, pulmonary, dermatologic, neuromuscular, gastrointestinal, urinary, diabetes, orthopedic]); 3) symptom frequency and distress; and 4) psychosocial variables (i.e., satisfaction with emotional, tangible, and overall social support; overall stress, physical, psychosocial, self-care, family, work/school/financial, and hospital/clinic stress; and overall positive coping, overall negative coping, and confrontive, evasive, optimistic, fatalistic, emotive, palliative, supportant, and self-reliant coping). Regression assumptions, including those for multicollinearity, were assessed and met.
Kaplan-Meier survival actuarials were used to examine the relationship of perceived satisfaction with social support and survival. Social support responses were stratified into high, moderate, and low satisfaction. Among patients who selected the response that they needed help, satisfaction scores for overall social support were stratified into 3 groups, as determined by the mean scores. The group with high satisfaction with support (n=120) had a mean score of 0 indicating they were highly satisfied. The remainder of the mean scores were divided into 2 groups: patients with moderate satisfaction with support (N=38) and patients with low satisfaction with support (N=42) groups, stratified by mean scores of >0 to 0.5 and >0.5 to 1.0, respectively.
Although every attempt was made to collect any missing data, there were a small number of subjects who had missing data. To address missing data, we employed a multiple imputation procedure, PROC MI in SAS, with propensity score method.42,43 Five sets of imputations were estimated. The results were computed on each of the five imputed data sets in order to maximize stability and validity of study findings. The results were then combined to generate the final imputed values of the missing data.
Results
Description of Satisfaction with Social Support
The number of patients in each time period is provided in Table 1. We found that of the subjects who selected needing support, response frequencies were overwhelmingly satisfactory for both emotional and tangible support at 5 and 10 years after heart transplantation. (See Tables 2 and 3) Most subjects were very or fairly satisfied with their social support. The number of subjects who selected “don’t need help in this area right now” for items in the emotional support subscale ranged from 27% to 49% (See Table 2) and those who selected that they did not need help with tangible support items ranged from 27% to 77% (See Table 3).
Table 1.
Number of Study Participants who completed questionnaires per Time Period
| Time Period | Frequency | Percent | Cumulative Frequency |
Cumulative Percent |
|---|---|---|---|---|
| 5.0 | 212 | 10.53 | 212 | 10.53 |
| 5.5 | 245 | 12.17 | 457 | 22.70 |
| 6 | 241 | 11.97 | 698 | 34.67 |
| 6.5 | 224 | 11.13 | 922 | 45.80 |
| 7.0 | 200 | 9.94 | 1122 | 55.74 |
| 7.5 | 185 | 9.19 | 1307 | 64.93 |
| 8.0 | 162 | 8.05 | 1469 | 72.98 |
| 8.5 | 154 | 7.65 | 1623 | 80.63 |
| 9.0 | 149 | 7.40 | 1772 | 88.03 |
| 9.5 | 131 | 6.51 | 1903 | 94.54 |
| 10.0 | 110 | 5.46 | 2013 | 100.00 |
Table 2.
Frequencies of Emotional Social Support Satisfaction at 5 and 10 Years post Heart Transplantation (of patients who need emotional support help) and those who do not need help
| 5 Years | Very Satisfied |
Fairly Satisfied |
Somewhat Dissatisfied |
Very Dissatisfied |
Total Need Help |
Total Don’t need Help* |
Total Respondents |
|||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Question | N | % | N | % | N | % | N | % | N | N | % | N |
| 6 Helps by talking about problems | 114 | 77 | 26 | 17 | 7 | 5 | 2 | 1 | 149 | 63 | 30 | 212 |
| 12 Who can patient confide in about intimate concerns |
123 | 81 | 25 | 16 | 3 | 2 | 1 | 1 | 152 | 60 | 28 | 212 |
| 13 Helps patient stick to transplant regimen |
101 | 93 | 6 | 6 | 0 | 0 | 1 | 1 | 108 | 104 | 49 | 212 |
| 14 Helps patient feel good about self | 130 | 85 | 20 | 13 | 2 | 1 | 2 | 1 | 154 | 58 | 27 | 212 |
| 15 Gives patient encouragement when things get rough |
134 | 88 | 16 | 10 | 2 | 1 | 1 | 1 | 153 | 59 | 28 | 212 |
| 10 Years |
Very Satisfied |
Fairly Satisfied |
Somewhat Dissatisfied |
Very Dissatisfied |
Total Need Help |
Total Don’t need Help* |
Total Respondents |
|||||
| Question | N | % | N | % | N | % | N | % | N | N | % | N |
| 6 Helps by talking about problems | 65 | 85 | 10 | 13 | 1 | 1 | 0 | 0 | 75 | 35 | 32 | 110 |
| 12 Who can patient confide in about intimate concerns |
69 | 91 | 7 | 9 | 0 | 0 | 0 | 0 | 76 | 34 | 31 | 110 |
| 13 Helps patient stick to transplant regimen |
53 | 90 | 5 | 8 | 1 | 2 | 0 | 0 | 59 | 51 | 46 | 110 |
| 14 Helps patient feel good about self | 72 | 91 | 6 | 8 | 1 | 1 | 0 | 0 | 79 | 31 | 28 | 110 |
| 15 Gives patient encouragement when things get rough |
71 | 93 | 5 | 7 | 0 | 0 | 0 | 0 | 76 | 34 | 31 | 110 |
The small number of "need help but do not have it" responses (approx. 1.5% of the total responses) were included in this column.
Table 3.
Frequencies of Tangible Social Support Satisfaction at 5 and 10 Years post Heart Transplantation (of patients who need tangible support help) and those who do not need help
| 5 Years | Very Satisfied |
Fairly Satisfied |
Somewhat Dissatisfied |
Very Dissatisfied |
Total Need Help |
Total Don’t need Help* |
Total Respondents |
|||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Question | N | % | N | % | N | % | N | % | N | N | % | N |
| 1 Helps with house chores | 102 | 76 | 30 | 22 | 3 | 2 | 0 | 0 | 135 | 77 | 36 | 212 |
| 2 Takes care of children/elders |
59 | 81 | 12 | 17 | 2 | 2 | 0 | 0 | 73 | 139 | 66 | 212 |
| 3 Helps with personal care | 57 | 85 | 9 | 13 | 1 | 2 | 0 | 0 | 67 | 145 | 68 | 212 |
| 4 Helps with transportation to hospital/clinic |
124 | 93 | 10 | 7 | 0 | 0 | 0 | 0 | 134 | 78 | 37 | 212 |
| 5 Helps with money | 77 | 83 | 11 | 12 | 1 | 1 | 4 | 4 | 93 | 119 | 56 | 212 |
| 7 Helps with emergencies | 151 | 91 | 12 | 7 | 1 | 1 | 1 | 1 | 165 | 47 | 22 | 212 |
| 8 Helps with groceries/running errands |
107 | 93 | 7 | 6 | 0 | 0 | 1 | 1 | 115 | 97 | 46 | 212 |
| 9 Helps with medications | 47 | 96 | 1 | 2 | 0 | 0 | 1 | 2 | 49 | 163 | 77 | 212 |
| 10 Helps with financial/legal information advice |
84 | 82 | 17 | 16 | 1 | 1 | 1 | 1 | 103 | 109 | 51 | 212 |
| 11 Helps keep track of health at home |
92 | 91 | 8 | 8 | 0 | 0 | 2 | 1 | 102 | 110 | 52 | 212 |
| 10 Years |
Very Satisfied |
Fairly Satisfied |
Somewhat Dissatisfied |
Very Dissatisfied |
Total Need Help |
Total Don’t need Help* |
Total Respondents |
|||||
| Question | N | % | N | % | N | % | N | % | N | N | % | N |
| 1 Helps with house chores | 69 | 86 | 11 | 14 | 0 | 0 | 0 | 0 | 80 | 30 | 27 | 110 |
| 2 Takes care of children/elders |
34 | 85 | 6 | 15 | 0 | 0 | 0 | 0 | 40 | 70 | 64 | 110 |
| 3 Helps with personal care | 37 | 90 | 4 | 10 | 0 | 0 | 0 | 0 | 41 | 69 | 63 | 110 |
| 4 Helps with transportation to hospital/clinic |
61 | 95 | 3 | 5 | 0 | 0 | 0 | 0 | 64 | 46 | 42 | 110 |
| 5 Helps with money | 42 | 88 | 4 | 8 | 2 | 4 | 0 | 0 | 48 | 62 | 56 | 110 |
| 7 Helps with emergencies | 74 | 91 | 7 | 9 | 0 | 0 | 0 | 0 | 81 | 29 | 26 | 110 |
| 8 Helps with groceries/running errands |
55 | 95 | 3 | 5 | 0 | 0 | 0 | 0 | 58 | 52 | 47 | 110 |
| 9 Helps with medications | 26 | 100 | 0 | 0 | 0 | 0 | 0 | 0 | 26 | 84 | 76 | 110 |
| 10 Helps with financial/legal information advice |
42 | 84 | 7 | 14 | 1 | 2 | 0 | 0 | 50 | 60 | 55 | 110 |
| 11 Helps keep track of health at home |
38 | 90 | 4 | 10 | 0 | 0 | 0 | 0 | 42 | 68 | 62 | 110 |
The small number of "need help but do not have it" responses (approx. 1.5% of the total responses) were included in this column.
The two areas in which subjects were more satisfied with emotional support at 5 years were having someone help them with the transplant regimen and encouragement. At 10 years post transplant, subjects were more satisfied with having someone to encourage them and someone to confide in. The areas in which patients were less satisfied with emotional support at 5 and 10 years were having someone to talk to about problems and someone to help with the transplant regimen, respectively. The three areas in which patients were more satisfied with tangible support at 5 and 10 years were regarding help with transportation, medications, and running errands. At 5 and 10 years post heart transplantation, the areas of less satisfaction with tangible support focused on help with finances, chores, and care of children and elders.
Satisfaction with Social Support Over Time
Subjects reported high satisfaction with both tangible and emotional support. At 5 to 10 years after heart transplantation, transplant recipients were very satisfied with overall social support, which was unchanged over time (See Figure 1). Satisfaction with emotional support and tangible support also remained stable over time (See Figure 2). Although not significantly different across time, recipients reported more satisfaction with tangible support than emotional support.
Figure 1. Satisfaction with Social Support Over Time.
Plot of mean satisfaction of social support from 5 to 10 years post heart transplantation.
Figure 2. Satisfaction with Emotional and Tangible Social Support Over Time.
Plot of mean satisfaction of emotional and tangible support from 5 to 10 years post heart transplantation.
Satisfaction with Social Support and Survival
Satisfaction with social support was not associated with survival of long-term heart transplant recipients when satisfaction with social support was stratified into 3 groups: high, moderate, and low levels of satisfaction. These same groups were then examined using survival actuarials, and no differences in survival were detected among groups (See Figure 3).
Figure 3. Satisfaction with Social Support and Survival.
Kaplan-Meier survival curves of stratified levels of satisfaction with social support.
Satisfaction with Social Support and Quality of Life
There were significant negative relationships (lower score = more satisfaction) among satisfaction with emotional, tangible, and overall social support and HRQOL, indicating that more satisfaction with social support was associated with better HRQOL (r = −0.60, −0.50, and −0.54 respectively, p < .0001).
In addition, we identified relationships between the two types of social support (tangible and emotional) and HRQOL in recipients 5 to 10 years after heart transplantation. Univariate regression analyses revealed that overall, emotional, and tangible satisfaction with social support predicted HRQOL at 5 and 10 years after heart transplantation. Satisfaction with emotional social support was a predictor of better HRQOL at 5 and 10 years after transplant, explaining 17% of variance (p<.0001) at 5 years, and 32% of variance (p<.0001) at 10 years. Likewise, satisfaction with tangible social support predicted better HRQOL at 5 and 10 years after heart transplantation, explaining 12% of variance (p<.0001) and 25% of variance (p<.0001) at 5 and 10 years, respectively.
Our univariate findings were partially supported by our multivariate regression models. When emotional, tangible, and overall satisfaction with social support were entered into the multiple regression model, overall satisfaction with social support was a significant predictor of HRQOL at 5 years after heart transplantation, and along with other variables, explained 59% of the variance (p<.0001) (See Table 4). At 10 years after heart transplantation, emotional social support was a predictor of HRQOL and with other variables, explained 66% of the variance (p<.0001) (See Table 5).
Table 4.
Multiple Regression Model: Predictors of Quality of Life at 5 years post HT (n=211)
| Variable | B | SE | p |
|---|---|---|---|
| Age (older) | .002 | .000 | .005 |
| Co-existing illnesses (Fewer) | −.007 | .002 | .008 |
| Sensory, cognitive, neuromuscular co-morbidities (Fewer) | −.223 | .039 | <.0001 |
| Positive Coping (More) | .203 | .066 | .003 |
| Self reliant Coping (Less) | −.123 | .060 | .042 |
| Satisfaction with Overall Social Support (More) | −.388 | .063 | <.0001 |
| Overall Stress (Less) | −.161 | 068 | .02 |
| Job/School/Financial Stress (Less) | −.012 | .004 | .003 |
(These 8 variables explained 59% of the variance.)
Table 5.
Multiple Regression Model: Predictors of Quality of Life at 10 years post HT (n=110)
| Variable | B | SE | p |
|---|---|---|---|
| Female | −.063 | .022 | .005 |
| Cardio-pulmonary symptoms (Fewer) | −.175 | .056 | .002 |
| Dermatology symptoms (Fewer) | −.173 | .043 | .0001 |
| Sensory, cognitive, neuromuscular co-morbidities (Fewer) | −.216 | .074 | .004 |
| Overall Negative Coping (Less) | −.347 | .085 | <.0001 |
| Supportant Coping (More) | .106 | .045 | .021 |
| Self reliant Coping (More) | .153 | .051 | .003 |
| Satisfaction with Emotional Social Support (More) | −.46 | .108 | <.0001 |
(These 8 variables explained 66% of the variance.)
Discussion
Satisfaction with Social Support
To our knowledge, this is the first report to describe social support and the relationship between social support and outcomes long-term after heart transplantation. Similar to other studies of chronic illness patients,2,3 our study revealed that patients were very satisfied with social support long term after transplant. Our findings were comparable to heart failure patients who reported moderate to high levels of perceived social support. The finding of high satisfaction with social support could be related to the fact that transplant candidates undergo a rigorous social evaluation prior to transplantation. Potential transplant candidates with few social support resources would be considered high risk for poor post transplant outcomes, and may not be considered for transplantation.
Satisfaction with Social Support over Time
In contrast to our findings, most of the literature in other chronic disease populations reported a decline in satisfaction with social support over time.20,24.26 Similar to a few studies, we found satisfaction with social support to be stable over time which has not been previously reported. Burg et. al.3 reported stable and improved social support in coronary heart disease patients over time. Additionally, Bennett and colleagues2 found that some heart failure patients reported high social support at study onset with large decreases by 12 months, and others who reported low support at study onset experienced large increases in social support by 12 months. Both satisfaction with tangible and emotional social support remained stable from 5 to 10 years after transplant. From a clinical perspective, this finding is important, as it alerts clinicians to monitor support and offer resources to patients with limited social support.
Additionally, transplant recipients reported greater satisfaction with tangible support as compared to emotional support. This finding may be due to the fact that tangible support is more discreet and focused on material items (i.e., a “to do” list) with a concrete timeline, while emotional support is more nebulous and challenging to fulfill. At 10 years post transplant, patients were less satisfied with financial help as compared to 5 years. This finding suggests that resources that may be available at one time may not be available years later. Interestingly, 70% of patients at 5 and 10 years after heart transplant reported not needing help with obtaining medications. This finding may be due to the effect of careful psychosocial and financial screening prior to transplantation and / or the availability of pharmaceutical medication assistance programs after transplant.
Satisfaction with Social Support and Survival
There are contradictory findings regarding the relationship between social support and survival in chronic illness.5,6,29–33 We found that satisfaction with support was not associated with survival after heart transplantation. However, fewer recipients reported low or moderate satisfaction than high satisfaction, which may have limited our findings. Thus, further research is warranted in the heart transplant population.
Satisfaction with Social Support and Quality of Life
There were significant associations between satisfaction with social support and HRQOL in both our univariate and multivariate models. Similar to other cardiovascular studies,2,3 when other factors were entered into the regression equation, overall satisfaction with social support continued to be a significant independent predictor of HRQOL at 5 years after transplant. Bohachick and colleagues6 reported that early after discharge, heart transplant patients who perceived better social support network helpfulness over time had better functioning and a sense of well-being. Patients who had stronger attachment/expressive support had less depression and anger and higher levels of optimism, well-being, satisfaction with life and personal functioning.6 Wang et. al.9 examined self-care, hope, and social support in Taiwanese heart transplant candidates and found that social support was predictive of increased self-care behaviors and hope.
At 10 years after transplant, satisfaction with emotional social support, but not tangible support was a significant predictor of HRQOL. Perhaps as transplant patients live longer, emotional support becomes more important than tangible support. These results confirm the importance of satisfaction with social support, particularly emotional support, in the daily lives of long-term heart transplant recipients. Similarly, Hategan et. al.44 reported that the influence of social support on transplant recuperation may be affected by particular time periods, both early post transplant when the event is new and longer term post transplant when there may be changes in social roles.44
Limitations
This study has limitations. Comparative analyses were limited by the small numbers of patient who reported being dissatisfied with social support. Only two domains of social support were examined, emotional and tangible. Other types of social support such as informational and appraisal may also be important in fully understanding the concept of social support after transplantation. Other factors, such as sociodemographic characteristics, may also impact social support and were not included in this report. Our sample was mostly Caucasian and male which may bias results. However, our sample is representative of heart transplant recipients in the United States, and our sites were geographically diverse which also increased representativeness of our sample. Another limitation includes our assessment of social support in heart transplant survivors who volunteered to participate in our study which could introduce bias into the findings. One could conceive that patients who were dissatisfied did not complete the questionnaire or participate in the study. Importantly, we compared characteristics of patients who enrolled and did not enroll in our study which revealed that patients who did not enroll in our study were significantly younger than patients who enrolled. We also collected reasons for non-compliance with booklet completion in order to understand reasons for missing data.
Summary
Our study demonstrated high patient satisfaction with social support long-term after heart transplantation. Satisfaction with social support was a predictor of HRQOL, but not survival at 5 and 10 years.
Our study provides evidence that satisfaction with social support is an important factor in the HRQOL of heart transplant recipients at 5 to 10 years after surgery. Further investigation is needed to understand additional types of social support that may be related to HRQOL and other post transplant outcomes. Also, the unique role of the heart transplant team and their function as a social support resource requires exploration. With a greater understanding of satisfaction with social support long-term after transplantation, interventional studies are the next logical step to identify and test specific interventions to improve social support for patients dissatisfied with support. Future studies of social support after heart transplantation may contribute to enhancements in clinical practice and optimization of patient outcomes.
Acknowledgement
This research was funded by the NIH (National Institute of Nursing Research, R01 #NR005200); a grant-in-aid from the College of Nursing, Rush University; intramural funding from the Rush Heart Institute, Rush University Medical Center; and intramural funding from Northwestern University, Department of Surgery, Division of Cardiothoracic Surgery.
Contributor Information
Connie White-Williams, University of Alabama Medical Center, Birmingham, AL.
Kathleen L. Grady, Northwestern Memorial Hospital, Chicago, IL.
Susan Myers, University of Alabama Medical Center, Birmingham, AL.
David C. Naftel, University of Alabama Medical Center, Birmingham, AL.
Edward Wang, Northwestern Memorial Hospital, Chicago, IL.
Robert Bourge, University of Alabama Medical Center, Birmingham, AL.
Bruce Rybarczyk, Virginia Commonwealth, Richmond, VA.
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