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Longitudinal Study of Adaptation to the Stress of Bone Marrow Transplantation

From the Indiana University School of Nursing, Indiana University Cancer Center; Indiana University School of Medicine; Walther Cancer Institute; and Methodist Hospital of Indiana, Indianapolis, IN.

Address reprint requests to Betsy Fife, PhD, Indiana University Medical Center, 1111 Middle Dr, No 340, Indianapolis, IN 46202; email iuoq700{at}iupui.edu

	ABSTRACT

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
PURPOSE: This prospective longitudinal study of adaptation to bone marrow transplantation (BMT) addressed three questions: (1) When during BMT do individuals experience the greatest distress? (2) What factors are associated with this distress? (3) Are there variables that could be potential clinical indicators of persons in greatest need of preventive intervention?

PATIENTS AND METHODS: One hundred one participants undergoing either an autologous or allogeneic BMT completed questionnaires before hospitalization, before bone marrow infusion, 7 days and 14 days after transplantation, and then 1 month, 3 months, and 12 months after hospitalization. Adaptation was indicated by the degree of emotional distress. Independent variables were personal control, social support from specific sources, cognitive response, self-perception, and coping strategies, controlling for symptomatology.

RESULTS: The greatest emotional distress occurred after admission to the hospital and before the bone marrow infusion. Anxiety and depression decreased 1 week after the transplant, although symptomatology increased during this time. The periods of least emotional distress were 3 months and 1 year after transplantation. Factors that accounted for the greatest variance in emotional distress/adaptation were the degree of emotional distress at baseline, personal control, cognitive response, and symptomatology.

CONCLUSION: According to this longitudinal study, which includes pretransplant data, data from in-hospital transplantation, and posttransplant data, (1) psychosocial vulnerability of these BMT recipients was greatest during hospitalization before the transplant, (2) perceived personal control may be a potential indicator of vulnerability to secondary psychosocial morbidity, and (3) the demonstrated significance of psychosocial well-being before BMT indicates the importance of obtaining prospective data for both research and clinical purposes.

	INTRODUCTION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
BONE MARROW transplantation (BMT) is an aggressive form of therapy that creates significant physical, social, psychologic, and emotional stress for both the patient and the family; consequently it has a profound impact on quality of life. It is associated with invasive medical procedures and distressing physical symptoms resulting from the toxicity of the treatment,^1-4 isolation during the transplant,^1,5 periods of prolonged uncertainty regarding the outcome of treatment,^3,6-8 changes in body image,^9,10 and periods of time when independence is lost, important personal goals are threatened, and it becomes impossible for individuals to carry out roles they routinely assume as a part of everyday living.^11-13 The complexity and intensity of the threat often require new coping strategies for adaptation. Therefore, vulnerability is increased, and the potential for impaired quality of life and psychosocial morbidity becomes a central concern. This concern is compounded by the increasing use of BMT to treat a variety of life-threatening illnesses, for it has evolved from an experimental to a front-line conventional therapy.^14-17

Research pertaining to the quality of life of bone marrow recipients has not kept pace with biomedical research. In particular, there is a lack of systematic empirical data beginning with the earliest phases of BMT, including the pre-BMT period.^1,8,18 However, such data are crucial to understanding problems of long-term adjustment, assuming that coping is a process that changes continuously in response to changing circumstances.^19-21 Available data indicate a considerable number of survivors develop psychosocial morbidity secondary to the transplant.^22-24 Recent studies have compared BMT survivors with healthy individuals and have found that after BMT, recipients reported a significantly greater degree of impaired general health, social functioning, and emotional well-being.^25,26 Specifically, findings of several studies indicate that there are acute problems of isolation and loneliness, fear of death, a sense of loss of personal control, depression, and even suicidal ideation.^{6,7,17,24,27-29} Pain and symptoms of toxicity during the transplantation trajectory may precipitate or aggravate these problems. Importantly, there are indications that psychosocial variables such as depression and social support may affect the outcome of the BMT itself as well as subsequent survival,^30-34 and quality of life is often regarded as a mark of treatment effectiveness.

A large number of studies have been performed 1 to 10 years after BMT and have examined the problems associated with long-term adjustment without the benefit of data obtained before transplantation, during the actual transplant procedure, or during the period immediately after transplantation, when individuals are often coping with the most severe side effects of the treatment.^6,7,11,35,36 Consequently, there are few prospective longitudinal studies available that make it possible to understand how experiences before as well as during the transplantation affect long-term adaptation, to anticipate what specific psychosocial stressors may occur at various points in the treatment process, and to identify factors that may contribute to the exacerbation or amelioration of BMT-related stress.^1,37

Given these gaps in the current literature, longitudinal, prospective, empirical research that can be replicated is necessary to (1) clearly understand problems of long-term adjustment with the benefit of a baseline before BMT, (2) provide additional information for making treatment decisions,^38,39 (3) identify those variables that can serve as clinical indicators of individuals who are most vulnerable to developing psychosocial morbidity secondary to BMT,^35,39 (4) obtain data necessary to develop effective preventive and rehabilitative interventions, as well as (5) understand what types of interventions are needed at particular points in time.⁴⁰

The purpose of this prospective, hypothesis-generating study was to provide longitudinal data concerning adaptation to BMT that include the pretransplant, prehospitalization period as a basis of comparison, the period of hospitalization, and the posthospitalization period up to 1 year after transplantation. Throughout these time intervals, individuals and their families must cope with life-threatening circumstances that are associated with numerous stressful changes. Three specific questions are addressed: (1) At what specific time points in the BMT process do individuals experience the greatest distress? (2) What factors are associated with this distress as well as with the individual’s ability to cope and adapt successfully? (3) What variables demonstrate the potential to serve as clinical indicators of those individuals in greatest need of intervention if the development of psychologic, emotional, and social problems secondary to the transplant are to be minimized or prevented?

	PATIENTS AND METHODS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
Patients
One hundred one participants being treated by either autologous or allogeneic BMT were recruited for this research before hospitalization and transplantation. This was a convenience sample, with the eligibility criteria being that individuals be medically approved for a BMT, not have had a prior BMT, have no major psychiatric disorder, and be 18 years of age or older. Characteristics of the sample are listed in Table 1.

Written informed consent was given by each subject, and the protocol was approved by the institutional review board of each participating institution. Potential participants were contacted by clinicians as well as by the investigators, depending upon the site and the individual’s circumstances. Contacts were made either in person or by telephone, and of those persons who were asked to participate and gave their consent, 71% returned the first questionnaire. The investigators did not have free access to all BMT recipients at each site, as they were screened for appropriateness for participation by clinicians.

Procedure
Data were collected by self-report questionnaires at seven designated time points: before hospitalization for the BMT (T₁); 1 to 2 days before infusion of the bone marrow during the end of the period of high-dose chemotherapy (T₂); 7 days after bone marrow infusion (T₃); 14 days after bone marrow infusion or just before discharge from the hospital, which ever occurred first (T₄); and 1 month, 3 months, and 12 months after discharge (T₅, T₆, and T₇, respectively) (Table 2). Collection of data at specified points during the transplantation process, as well as before transplantation, was essential in the effort to control for variation in the physical condition of participants and the effects of treatment; furthermore, this design permitted an analysis of change as it occurred across time and a systematic study of the impact of BMT on quality of life.

Twelve variables were measured during the course of this study, as presented in Table 2. The outcome measure, adaptation, was indicated by emotional response, specifically depression, anxiety, uncertainty, and anger. Emotional response was used as the indicator of adaptation because it is one of the few aspects of existence individuals have any control of by way of their coping responses during acute phases of BMT; furthermore, emotional status is generally regarded as an important criterion of life adjustment.^41-43 The Bi-Polar Profile of Mood States⁴⁴ was used to assess emotional response because each variable is on a continuum, thereby providing a measure of both positive and negative emotion.

The significance of the effects of selected independent variables on adaptation/emotional response was also examined. Social support from three specific sources—family, friends, and health care professionals—was evaluated. Modified versions of the Perceived Family and Perceived Friends’ Support Scales were used,⁴⁵ along with the Perceived Health Care Provider Support Scale.⁴⁶ The effectiveness with which individuals cope with stress was assessed using the Ways of Coping Checklist,^19,20 which was modified for individuals coping with life-threatening illness. It included a total of 40 items, and participants were asked to indicate how frequently they used each strategy on a five-point scale, from "never" to "very often." Four subscales derived by a factor analysis using principal components extraction and varimax rotation, based on the data from this research, were defined for subsequent analyses: cognitive coping/positive focusing, avoidance, seeking spiritual comfort, and active coping. Cronbach’s alpha coefficients of reliability for these subscales were 0.82, 0.64, 0.88, and 0.80, respectively. Cognitive coping/positive refocusing included strategies that enabled individuals to see their circumstances from a more positive perspective, ie, "I tried to look on the bright side of things," or "I tried to see the BMT in a different light that made it seem more bearable." Conversely, avoidance coping included behaviors individuals engaged in to evade their problems, ie, "I tried to make myself feel better by eating, drinking, smoking, using drugs or other medications," or "I daydreamed or imagined a better time or place than the one I am in." Spiritual coping included the use of prayer, trusting God, and reading spiritual literature, and active coping entailed strategies such as "I made a plan of action and followed it" or "I talked with someone who could give me more information about BMT."

The impact of BMT on perception of the self was assessed by the Mastery Scale,⁴⁷ which measures the extent to which individuals feel they have personal control over what is currently happening in their lives and what is likely to happen in the future. A measure of body image was also included. A scale specific to the problems of body image confronting persons undergoing BMT and treatment for cancer was developed for this research, comprising seven items with a Likert-type format. Cronbach’s alpha using these data was 0.82.

Cognitive perception of the transplant and its impact on personal identity and attitude toward the future was measured by the Meaning of Illness Scale and adapted for BMT.^48,49 Using these data, the scale was found to have item-total correlations ranging from 0.50 to 0.73 and an alpha coefficient of 0.81. The measure includes a total of eight items on a Likert-type scale, with a score of 32 indicating the most positive perception of meaning and a score of 8 indicating the most negative. This variable could also be taken as an indicator of the individual’s outlook on life given his or her circumstances—a factor considered significant for potential psychosocial adjustment.⁵⁰

The impact of symptomatology, or the perceived level of well-being on adaptation, was controlled in the analyses using the BMT Symptom Checklist developed by the research team for this study. It included a total of 16 symptoms ranging from physical symptoms to social/psychologic symptoms. Participants were asked to indicate on a five-point scale how frequently they experienced each symptom, from "not at all" to "very frequently." The total scale was partitioned into two subscales for purposes of the analyses. The first subscale included the physical symptoms of nausea, vomiting, mouth pain, difficulty swallowing, diarrhea, decreased appetite, pain, fever, and fatigue. The second subscale included the psychosocial symptoms of boredom, isolation, loneliness, difficulty concentrating, difficulty sleeping, and also fatigue, as it can be an integral aspect of psychologic variables such as depression. The relationship between the two subscales was analyzed by computing correlations at each time point in the data. The degree of association ranged from 0.38 to 0.66, indicating they were related but clearly distinct from one another; therefore, they were used as separate subscales in the analysis. The reliability of each subscale was evaluated and found to be satisfactory, with alpha coefficients of 0.84 for the scale of physical symptoms and 0.76 for the psychologic symptoms, which compared favorably with statistics for the composite scale (alpha = 0.86).

Although it would have been most desirable to include this full battery of measures at each time point, this was not done because of concern about the response burden for individuals undergoing this highly toxic and stressful treatment. Variables considered to be most directly subject to rapid change as a result of the treatment were measured at each time point. Other variables included in this study were measured based on the degree to which they were expected to be subject to change, as well as on their expected importance to adaptation at specific data points during the transplantation process. The time points for the measurement of each variable are listed in Table 2.

Statistical Analysis
As expected, because of the seriousness of the illness and severity of the treatment, we had missing data. Therefore, to be thorough, all analyses were conducted in two ways: first, using only the observed data, and second, using imputed data. To create the imputed data set, missing data only were imputed by replacing missing values at a given time point with the corresponding value from the previous time, ie, the last value carried forward. No data were imputed for the baseline, T₁, or for T₂ because of the conceptual difference that would be expected between T₁ and T₂. In addition, data were only imputed if participants completed data at three or more time points. Furthermore, for participants who died during the study, data were only imputed for time points during which they were known to be alive. For those variables that were to be collected at all time points, the missing data for T₃ through T₇ were imputed using data from the previous time point only. Thus, if a patient was missing data for a given variable at two consecutive time points, data would only be imputed for the first occurrence of the missing value and not for the second. As previously described, there were variables for which data were not collected at every time point (Table 2). For these variables, missing values for the scheduled data points only were imputed using earlier data from the data point of closest proximity. If no values from the previous time point were available, no imputations were made. We emphasize that the findings using the observed data set and those using the imputed data set did not differ substantively. However, the larger imputed data set allowed us to conduct statistical analyses adhering to assumptions upon which these procedures are based. The reported findings are based on analyses using the imputed data set unless otherwise indicated, ie, T₁ and T₂.

Initially, t test difference of means were conducted using the observed data to determine whether there were significant differences in the dependent variables measuring emotional response/adaptation and in the degree of symptomatology, by type of BMT (autologous v allogeneic). There were few significant differences, and no differences were significant on any of these variables for more than one time point. It is particularly noteworthy that the means for symptomatology were close to the same at all time points for these two groups. These findings are similar to those of Jenkins et al,⁶ Grassi et al,⁴³ Curbow et al and Sommerfield,⁵¹ and Baker et al,⁵² all of whom found that there was no relationship between type of BMT and adjustment. Therefore, given our findings and those of other investigators, the decision was made to analyze the data set as a single sample. Repeated-measures analysis of variance, correlations, and regression analyses were used to address the specific questions of the study as discussed below.

	RESULTS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
The first question in this study, at what specific points in the BMT process did individuals experience the greatest distress, was addressed using repeated-measures analysis of variance⁵³ to evaluate the changes that occurred across time in each variable. This method uses all available data and adjusts for within-subject variability. If there was a significant time effect (P < .05) for a given variable, the Duncan multiple range test was conducted to determine those time periods that differed significantly at alpha = .05.

Results of the repeated-measures analysis of variance are found in Table 3, which indicates the significance of overall change. Because of the exploratory nature of the study, we did not make adaptations for these multiple time points because the most significant aspect of this analysis was the fact that the same variables were consistently significant across time points. Findings indicate the period of greatest emotional distress and vulnerability occurred after admission to the hospital for transplantation and before infusion of the bone marrow, or at T₂. As shown by the analysis for T₁ through T₄, using the imputed data set, there was a significant increase in anxiety, depression, and uncertainty from T₁ to T₂, whereas the change in anger was not significant. In fact, this was the time of greatest emotional distress throughout the period of hospitalization and the first year after transplantation. This finding is consistent with Andrykowski’s⁸ and Lesko’s¹⁷ descriptions of the BMT process. Also notable is that both anxiety and uncertainty dropped significantly after discharge from the hospital (T₅), similar to symptomatology. This initial period of hospitalization is marked by isolation, limited visitation, limited physical contact with others, high-dose chemotherapy with or without total-body irradiation, and changes in physical appearance. The analysis also indicated a corresponding increase in physical symptomatology from T₁ to T₂, with a further increase from T₂ to T₃. However, despite this increase in symptomatology from T₂ to T₃, the levels of anxiety and depression began to decrease significantly 1 week after bone marrow infusion. There was a more gradual decline in uncertainty and anger throughout the period of hospitalization that did not reach significance before discharge. The periods of lowest emotional distress and vulnerability, including anger and uncertainty, or the periods of most positive adaptation, were 3 months and 12 months after transplantation (T₆ and T₇), when the response was significantly more positive than it was at baseline, or the period before transplantation (T₁). The coping strategy used most frequently during the period of hospitalization was cognitive coping, which includes mechanisms that are associated with individuals perceiving their current circumstances from a more positive perspective.

The second question, which pertained to those factors that were significantly related to the individual’s ability to cope and adapt successfully, was investigated by computing correlations (Pearson’s r) for each time point to determine the degree of association between the dependent variables, or emotional response/adaptation, and the independent variables. Variables related to emotional distress that were significant at P .10 or correlated at r .20 during hospitalization (T₂, T₃, and T₄) and 1 year after hospitalization (T₇) were further evaluated in the final regression analyses using both the observed data and the imputed data.⁵⁴ Results of the analysis using the imputed data are reported in Table 4.

The variable most strongly and consistently associated with emotional response throughout the period studied was personal control; the greater the individual’s sense of control over his or her life, the less emotional distress was experienced. Baker et al⁴² also found personal control, as measured by the Mastery Scale,⁴⁷ along with dispositional optimism, to be predictive of psychosocial adjustment. Body image, another aspect of self-perception, was similarly associated with emotional response but to a lesser extent, and the relationship did not increase in significance over time. Cognitive response represented the individual’s perception of the transplant and its impact on identity and his or her future, and the more positive the cognitive response, the more positive was the individual’s adaptation. Examples of items in this scale include, "A BMT is something I will never recover from," "I will be the same person as I was before my transplant," and "Having a BMT will interfere with my achievement of the most important goals I have set for myself." Cognitive response was also strongly associated with personal control (r = .62) and family support (r = .52), both of which were positively associated with lower levels of emotional distress (not shown).

Family support was the strongest and most consistent source of social support throughout the period of transplantation, while support from health care providers was associated with a decrease in depression and anger during this same period. Friends’ support did not seem to be particularly significant for persons undergoing transplantation. Correlations between emotional distress and social support were strongest during hospitalization. Cognitive coping strategies, such as positive reframing, were associated with a decrease in depression, anger, and uncertainty during hospitalization and transplantation, whereas the use of avoidance coping strategies was increasingly associated with an increase in anxiety during this time period.

Correlations were also computed to assess the relationships between each variable as measured at baseline and the values for that variable at T₂, T₄, and T₇. The results of this analysis are given in Table 5. It is particularly significant that individuals who were highly distressed emotionally at T₁, or before the transplantation, were also the individuals who were most distressed at T₂ and T₄, during hospitalization. These relationships dissipated to a large extent by T₇, or 12 months after hospitalization; however, a significant association between the levels of anxiety and anger at baseline and 12 months after hospitalization continued. Moreover, individuals’ sense of personal control before transplantation was significantly associated with lower levels of anxiety, depression, and uncertainty at each data point, whereas the perception of support from family members and health care professionals before transplantation was associated with lower levels of emotional distress only during the period of transplantation (T₂ and T₄).

As shown in Table 7, during hospitalization for transplantation, the variables that accounted for greater than 30% of the variance in the dependent variables were personal control and the emotional response variable from the baseline data that corresponded with the dependent variable. At T₇, 12 months after hospitalization (Table 8), more than 50% of the variance in anxiety, depression, and uncertainty was explained by personal control, the presence of physical symptomatology, and the variable from the baseline data corresponding with the dependent variable. This is the only point in the study period, other than T₁, when physical symptomatology was significantly associated with emotional distress.

	DISCUSSION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
A primary question addressed by this study was, At what point during the transplant process are individuals most vulnerable to negative adaptation? The repeated-measures analysis of variance points to the period of initial hospitalization (T₂) as being most stressful, although from a medical standpoint, this period is the least risky. However, this is a period of intensive therapy along with adjustment to isolation and relative inactivity that is fraught with uncertainty regarding the outcome.^8,17 The degrees of anxiety, depression, anger, and uncertainty were greater at this time than at any other time point in the data. Given these findings, this is a period of increased vulnerability, and if coping is viewed as a process during which early behavior influences subsequent behavior, there are implications for long-term adaptation.^19,20 Furthermore, depression and anxiety began to decrease within 1 week after the bone marrow infusion, even though the degree of symptom distress did not change. This finding suggests that hopefulness and the perception of possibilities for the future may transcend symptom distress; for example, this may be partially due to the individual’s perception of the transplant itself as a turning point in the treatment process. In fact, the infusion is sometimes referred to as "the rescue," either explicitly or implicitly by health care professionals. It is a time of renewed hope for individuals in anticipation of resuming life where they left off, and it is sometimes thought of as being given "a second chance" or being "reborn."¹⁷

Emotional distress declined steadily beginning at T₃ until it reached the lowest level at T₇, one year after transplantation, when it was significantly lower than the baseline for all emotional response variables. However, it was at this time point that symptomatology was most strongly associated with emotional distress. Given this finding, individuals who survived the transplant and made a positive recovery seemed to adapt positively without the development of serious long-term psychosocial consequences. This finding is consistent with the findings of both Baker et al⁶² and Curbow and Sommerfield.⁵¹ However, individuals who encountered less than positive outcomes seemed to be emotionally vulnerable, which is not surprising.

When individuals entered the hospital there was also an increase in perceived support from health care professionals. This perception of support was maintained throughout hospitalization and then decreased significantly. Although this finding is not surprising given the vulnerability of individuals and their increased dependence on caregivers during the period of intense treatment, it is important that health care providers be aware of the extent to which patients rely on their support at this particular time in the BMT process.

The second issue addressed by this study was the determination of those independent variables that have the greatest influence on emotional distress/adaptation. Given the correlations and regression analyses, personal control, adjusting for the emotional distress variables at baseline, was the factor that was most strongly and consistently associated with variability in adaptation. At T₇, or 12 months after the transplant, the extent of symptomatology was also important. Although cognitive response was not as strongly associated with emotional distress, consistently the more positive the cognitive response, the lower the level of distress, and it was strongly correlated with personal control as discussed above. All of these variables were important throughout the time periods studied in this research, and they had a significant impact on anxiety, depression, anger, and uncertainty.

Personal control is threatened throughout the BMT process as individuals necessarily become dependent on health care professionals for their survival. Therefore, an important clinical implication is considering ways persons could be helped to gain a greater sense of control over their lives throughout transplantation. Providing a thorough educational program at the outset with complete information relative to their illness and its treatment, including them in as many decisions as possible, and providing choices whenever feasible relative to their own care would be possible approaches.

The importance of personal control and emotional distress at baseline point to these two factors as possible clinical indicators of those individuals who may be in greatest need of intervention if psychologic and social morbidity secondary to the transplantation are to be minimized. Both these factors could be readily assessed before beginning transplantation using brief self-report measures, and subsequent individualized interventions can be planned based on these data.

Although symptomatology was not a significant factor during the transplantation and hospitalization, it was highly significant at T₇, perhaps because individuals expected to be very ill during the early phase of the treatment but expected to return to life as usual within a year after the transplant. This points to the importance of assessing the psychologic, emotional, and social well-being of those persons who develop complications that persist after hospitalization.

There are limitations to the data, indicating a need for caution when interpreting the results. First and foremost, it was not possible to obtain complete data from each participant throughout this longitudinal study, making it essential to account for this problem in the analyses, as described above. Furthermore, we did not ask for data on all measures at each time point because of patient burden during the most acute phases of the BMT; however, this also places limitations on the analysis. Forty-eight patients who participated in the study at the outset completed the final questionnaire 1 year after transplantation. A total of 21 participants died at various points throughout the period of data collection, other individuals were too ill to complete the questionnaires at particular data points, and after hospitalization some individuals seemed to be attempting to move beyond the transplant and dropped out, stating they no longer wanted to have to think about what they had been through. There was also evidence that at time points when data were not completed, some persons were experiencing recurrence of their disease, medical complications, and/or periods of intense emotional distress. The use of follow-up telephone calls, and the inclusion of letters with questionnaires that emphasized the need for data across time, contributed to data return, but it certainly did not eliminate the bias of self-selection or the impact of serious medical complications and related distress these individuals experienced.

Given these factors, selection bias exists that favors individuals who were experiencing lower levels of distress and those who were responding most favorably to the transplant. However, it would be expected that had individuals been able to complete all data when they were experiencing the greatest degree of symptomatology and side effects, ie, fever, nausea, mouth soreness, and graft-versus-host disease, our findings would have been even more significant when examining the relationship between emotional distress and other psychologic and behavioral variables. This is substantiated by Grassi et al,⁴³ who found correlations between anxiety and depression and distressing physical symptoms. On the other hand, missing data at T₆ and T₇ sometimes occurred because, as explained above, persons were feeling well and they wanted to "get on with life" and forget about the difficult experiences associated with BMT. In either case, missing data is a difficult problem that seems to be an inherent aspect of longitudinal research with highly vulnerable populations. However, the increasing use of BMT and the physical and psychologic vulnerability of this population make longitudinal research that includes each phase of the BMT all the more important despite its methodologic problems. To adequately understand those factors that affect long-term adaptation, longitudinal studies that include each phase of the BMT process are necessary.^8,17,37

The validity and fundamental integrity of the data are substantiated by the fact that relationships among the variables, consistency in the direction of responses, and trends within the data are congruent with existing theories and expectations. There are also several advantages to the design used in this research. First, it is prospective and it includes pre-BMT, prehospitalization data that provide a baseline for the measure of change, as well as data regarding the significance of pre-existing psychosocial status. Second, there are designated data time points during hospitalization that incorporate the most critical phase of the BMT from the perspective of survival as well as after hospitalization that include 1 year after BMT. This specificity allows for replication. Third, the level of symptomatology was controlled in the analyses. Fourth, the data are based on the subjective perceptions of participants, and there is agreement among a number of investigators that issues concerning quality of life are most meaningfully evaluated subjectively.^7,9,13 Corroborating data from an objective observer would add an interesting dimension to the study, and would be worth considering for future research; however, obtaining data of this type would require additional resources beyond those needed for self-report studies.⁸

Based on the findings of this research, there are several recommendations for practice, keeping in mind that further systematic, prospective, longitudinal research is needed. First, demonstration of the significance of the level of an individual’s emotional, social, and psychologic well-being before BMT for adaptation throughout the transplant process indicates the importance of a detailed assessment of these factors before the treatment process if optimal, holistic care is to be provided based on each patient’s needs. This finding could also have implications for the medical treatment itself if high levels of emotional distress are believed to influence recovery. This assessment could readily be implemented using valid and reliable brief self-report measures of selected variables, augmented by an assessment interview. Based on these findings, specific factors assessed would include the current degree of emotional distress, the individual’s level of a sense of personal control, and the individual’s perception of his or her illness and BMT—how it influences self-perception and one’s view of the future. Second, as discussed above, finding ways that individuals can be encouraged to exercise personal control over the treatment process and decisions that are made on a daily basis, as well as at crucial turning points, could decrease the level of distress experienced. Finally, support of health care professionals was shown to be an important factor during the transplant period in promoting positive adjustment.

In conclusion, this study contributes prospective data that include the most stressful points of the BMT trajectory. Data pertaining to the stress and adaptation of patients at these time points are lacking in the literature. Furthermore, it demonstrates that despite severe illness, persons are able to participate in self-report studies. Findings also have implications for considering the degree to which constraints of isolation should possibly be relaxed and for weighing possible benefits of outpatient BMT. There is clearly a need for further prospective longitudinal research such as this if problems of long-term adaptation are to be adequately understood and effective preventive interventions are to be developed for those individuals who are most vulnerable to psychologic, social, and emotional complications secondary to BMT.

	ACKNOWLEDGMENTS

 
Supported by a grant from Amgen Inc, Thousand Oaks, CA.

We thank Bill Carter, PhD, Bob Hill, PhD, and George Weber, MD, for their helpful comments on an earlier draft of the manuscript. We acknowledge the support of the physician, social work, and nursing staffs of the BMT programs at Indiana University, Methodist Hospital of Indiana, and Community Hospitals of Indiana, whose support was essential to the conduct of this research. We particularly thank the participants who shared their experiences with us throughout the most difficult phases of treatment.

	REFERENCES

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION REFERENCES

 
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Submitted March 1, 1999; accepted December 7, 1999.

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