role retention and quality of life of bone marrow transplant survivors

SK. Sri. Med. Vol. 32, No. 6. pp. 697-704. 1991 Printed in Great Bntain. All rights reserved

0277-953691 $3.00 + 0.00 Copyright mc 1991 Pergamon Press plc

ROLE RETENTION AND QUALITY OF LIFE OF BONE MARROW TRANSPLANT SURVIVORS*

FRANK BAKER,’ BARBARA CURBOW’ and JOHN R. WINGARD~ ‘Health Psychology Program, The Johns Hopkins University School of Hygiene and Public Health,

615 N. Wolfe St, Baltimore, MD 21205, U.S.A. and 2Department of Oncology, The Johns Hopkins School of Medicine, Baltimore, MD 21205, U.S.A.

Abstract-Bone marrow transplantation (BMT) offers the potential for survival of 50% or more for selected patients with malignant disease not controlled by other means. However, BMT introduces risks for psychological, social, and physical impairment and the potential for significant loss in one’s ability to retain important role relationships. While there has been a sharp increase in the performance of BMTs in the past decade, there has been little research on its effects on long-term survivors.

This paper presents the results of a follow-up survey of 135 survivors of BMT at the Johns Hopkins Oncology center. The ability of the survivors to maintain valued social roles is examined as this affects perceived quality of life. The main hypothesis of the paper, that role retention is significantly related to higher quality of life, is supported by significant correlations of role retention with quality of life as measured by the Satisfaction with Life Domains Scale, current and future life satisfaction on Cantril Self-Anchoring Ladders, and by the Bradburn Positive Affect Scale. While the Bradbum Negative Affect Scale was not significantly related to role retention, total negative mood as measured by the Profile of Mood States was inversely related to role retention at a statistically significant level.

Key words-quality of life, bone marrow transplantation. neoplasms, roles

INTRODUCTION

As the number of individuals surviving cancer and other life threatening diseases through aggressive treatment has increased over the last decade, there has been growing recognition of the importance of conducting research on the psychosocial adaptation and quality of life of long term survivors [l]. This appears to be part of an increasing general trend to include quality of life outcomes in the evaluation of the effectiveness of a variety of personally and finan- cially costly medical treatments. At a fundamental level, a major issue of concern is whether the ordeal of a demanding therapeutic intervention is worth it, given the quality of life that a patient may expect during and after the treatment. Because of such basic cost vs benefit questions, quality of life measures are now regularly included in the evaluation of cancer therapies [2].

Although there appears to be consensus on the importance of quality of life as an outcome variable in cancer treatments [3], there is still no general agree- ment on what it is, or how it should be measured. A broad spectrum of measures has been offered for use in the investigation of quality of life [4]-measures which range from the global (e.g. the Karnofsky Performance Status Scale) [5] to the multidimensional (e.g. Cancer Inventory of Problem Situations) [6]. In a review of the literature on the quality of life of cancer patients, de Haes and van Knippenberg [7] list the most widely studied domains as physical,

*An earlier version of this paper was presented at the Association for the Social Sciences in Health sessions at the American Public Health Association Annual Meeting, Boston, MA, 16 November, 1988.

psychological, social, activities, economic, and global well-being.

Most of the research literature has focused on the diagnostic, primary treatment and terminal stages of cancer, while only a few studies have examined quality of survivorship and the rehabilitation of cancer patients [8]. However, as more patients have been surviving the acute phases of cancer, more interest has developed in determining how people who have faced diagnosis and primary treatment get on with their lives and to what extent they experience a reasonable quality of life.

While there has been growing interest in the quality of life of survivors of cancer, because survival is still a relatively recent phenomena, relatively few system- atic empirical studies have been completed. However, there is evidence that both physical and psychological ‘late effects’ may plague survivors. This appears to result from the physical complications of aggressive cancer treatments, the stress of being near death, and the stigmatizing effects of being labeled a cancer patient (91. Survivors also have to deal with having been hospitalized for a considerable period and the enduring problems of patienthood such as the difficulty of returning to the structure of their pre- illness lives [lo].

Cancer patients, like other people who have to deal with severe chronic illness, experience major dislo- cations in their life situations and particularly in their social roles [Ill. There are a number of reasons for loss of roles including changes in physical health and the capacity to perform demanding roles. Divorce and other changes in survivors’ relationships with family and friends as a result of the demands made on their intimates can further restrict roles. The work role, in particular, may be jeopardized because of job

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698 FRANK BAKER et al.

discrimination and stigmatization. Hoffman [I 21 has estimated that approximately 25% of the 5 million individuals in the United States with a cancer history experience some form of employment discrimination solely because of their medical histories. Earlier research had reported that between 20-38% of cancer patients had difficulties in resuming productive work and family relationships after a primary diagnosis of cancer [13-l 51.

In the general population, work activity has been found to have an important relationship to life satisfaction and sense of well-being [16, 171. Barofsky [18] has noted the importance of work in the quality of life of cancer patients and pointed out that it is just one of a number of different forms of productive activity that offer both tangible and intangible rewards that are central to life satisfaction. Other activities or roles that are sources of tangible and intangible rewards, and which may be affected by cancer and its treatment, include being a family member, home maintainer, student, friend care giver and volunteer. Participating in organizations, religious activities and hobbies also are important to individuals depending on their interests and values, but are likely to have a less tangible consequence. All of these roles may be critical in organizing an individual’s life and relationships as well as providing needed resources. Although it is obviously important that research describe changes in salient roles or activities in relation to the effects of cancer and its treatment, as Barofsky [18] points out, this has not yet been adequately accomplished.

The primary purpose of this paper is to begin to fill that gap. It describes the results of a cross- sectional survey of valued roles and the quality of life of long-term survivors of malignant illness treated by bone marrow transplantation (BMT). The primary hypothesis examined here is that BMT survivors who were able to retain roles that they rated as personally important would experience a higher quality of life.

Bone marrow transplantation

Bone marrow transplantation is a particularly demanding procedure that raises serious quality of life issues for those who receive it. BMT is used in the treatment of patients with malignant disease which has either failed to be controlled by conventional means or where failure is expected. The patient is subjected to prolonged hospitalization in a critical care unit, during which there is a high risk of serious morbidity and death. Notwithstanding the severe emotional and physical trauma attendant to this procedure, it offers the potential for cure in 50% or more of selected patients with malignant disease not controlled by other means (19-231.

Basically, the treatment consists of transplanting bone marrow into the patient from one of three sources. Syngeneic transplantation is the infusion of marrow into a patient from a genetically identical twin donor; allogeneic from a donor who is not entirely genetically identical but is identical or close to identical with respect to the major histocompatibil- ity complex; and autologous from marrow taken from the patient’s own body at an earlier point in time.

Patients who undergo BMT first receive high doses of chemotherapy and/or irradiation to eradicate any cancer cells remaining after previous treatments and to produce sufficient immunosuppression to prevent rejection of transplanted bone marrow [24]. After this intense course of treatment, patients are infused with the marrow and started on a course of therapy to prevent graft versus host disease (GVHD). Because the patients are at risk of acquiring acute GVHD and serious infections during the time their immune systems are not functioning, they spend approximately 40 days as inpatients and another 60 days as out- patients. After this period, the patients have to discontinue school or work for another 6-12 months. While the treatment offers a possibility of cure for some patients, it clearly creates considerable personal, familial and economic burdens.

Few empirical studies have been conducted on the psychosocial effects of bone marrow transplantation and those that have been published suffer from the problems associated with small sample size. A pioneering study by Wolcott and colleagues [25] assessed 26 adult patients at a point one year or more (mean = 42 months ) post-BMT. About a quarter of their patients said they were experiencing significant emotional distress, chronic physical symptoms, low self-esteem and below optimal life satisfaction. By contrast, the other three quarters of their sample were apparently doing well psychologically and medically.

Hengeveld, Houtman and Zwaan [26] interviewed 17 patients from 1 to 5 years after receiving BMTs. These researchers found that about half the patients reported problems related to one or more of these areas: physical complications, sexual problems, infer- tility, and not returning to work.

Andrykowski, Henslee and Farrall [27] obtained questionnaires and interviews from 20 BMT survivors and from an additional three patients who completed only the questionnaires. The sample of patients was 3-52 months post-BMT. Current level of functioning was found to vary considerably across patients. Age at transplant was the only factor con- sistently associated with functional status; the older patients were at the time of transplant, the poorer was their current functioning.

Haberman [28], in an unpublished dissertation, reported on the results of interviews before BMT with 23 adults who had acute or chronic leukemia. Applying a qualitative ethnographic approach to analyzing these interviews, he concluded that patients attempted to compensate for the pervasive loss of personal control demanded by the BMT experience by attempting to exercise control in other parts of their lives.

METHOD

Subjects

The subject population in this study consisted of all 171 BMT survivors from the Johns Hopkins Oncol- ogy Center as of November, 1987 who met the following requirements:

(1) were 18 yr of age or more; (2) were 6 months or more post-BMT;

Role retention and quality of life of bone marrow transplant survivors 699

(3) had received allogenic, autologous, or syngeneic transplants;

(4) were not in a life-threatening relapse.

During the course of the study, one patient died and two could not be contacted. Of the remaining 168 patients, questionnaire surveys were returned by 135, yielding a response rate of 80.4%. Two additional surveys, completed for patients by family members, were received but not included in the analyses.

The respondent sample included more males (60.7%) than females and more whites (91 .l%) than other racial groups. Reflecting the trend of performing BMTs on relatively young patients, the mean age was 30.6 yr with a range of 18-53. Almost two-thirds of the sample reported having attended college; the overall mean years of education was 13.9. Approximately half of the respondents were married or living with a mate (51.1%); 11.9% were divorced, separated, or widowed, and 36.6% had never been married. A sizeable proportion of the sample had returned to work or school, with 51.1% working full-time, 14.1% working part-time, and 23.0% attending school.

The medical diagnoses which originally brought the respondents to the Oncology Center for bone marrow transplant included: acute myelogenous leukemia (25.9%), chronic myelogenous leukemia (23.0%), aplastic anemia (19.3%), acute lymphoblas- tic leukemia (14.8%), lymphoma (8.9%), Hodgkin’s Disease (7.4%), and neuroblastoma (0.7%). Most (69.6%) of the respondents had received an allogeneic transplant with fewer patients having autologous (25.2%) and syngeneic (5.2%) transplants. The sample included persons who were 6-149 months post-BMT; the mean was 47.0 months.

Survey instrument

The data was gathered by means of a self-administered questionnaire and respondents were provided with a preaddressed, stamped envelope in which to return the completed questionnaire. To ensure a high response, a multi-stage approach was used in the collection of the survey data [29]. This involved the following five steps:

(1) in late November 1987, all 168 eligible BMT survivors were sent a letter informing them of the survey and its general goals by the Outpatient Medi- cal Director;

(2) during the second week of December 1987, all eligible persons were mailed a survey and a postcard that could be mailed back to indicate disinterest in the project;

(3) during the second week of January 1988, a follow-up letter was sent to non-respondents;

(4) during the third week of February 1988, a second survey packet was sent to non-respondents; and

(5) finally, during the spring and summer of 1988, an effort was made to reach nonrespondents through telephone calls from either the Outpatient Medical Director or an oncology social worker. Although an intensive effort was made to recruit patients into the study, refusals were respected and, once expressed, further attempts to contact eligible persons were not made.

sSM 3216-F

As noted above, this procedure yielded a relatively high response rate. Comparisons between respondents and nonrespondents indicated no major differences in age, sex, time since BMT. and current health status.

Measures

A general role inventory was modified for the purpose of serving as a measure of the extent to which survivors were able to maintain pre-BMT roles:

The Role Checklist-consists of questions concem- ing 10 basic roles that an individual may perform [30]. Drawing from the list and format developed by Oakley (311, roles included in the checklist were specifically defined in order to minimize confusion. The respondents were asked whether they performed each of the roles before BMT and whether they were currently engaged in performing the roles. They were also asked to rate each role on a seven-point scale as to its importance before BMT and in terms of its current importance.

Two types of quality of life outcome measures (life satisfaction and psychological adjustment) were administered to BMT recipients. The life satisfaction measures included;

Satisfaction with Life Domains Scale (SLDS)-a variation of the Satisfaction with Life Domains Scale developed by Baker [32,33] to assess respondent satisfaction with various life domains. Respondents were asked to indicate their feelings by choosing one of seven faces ranging from a ‘delighted’ face with a large smile (scored 7) to a ‘terrible’ face with a deep frown (scored l), a response format developed by Andrews and Withey [34]. In an earlier study [33], a Cronbach alpha coefficient of 0.84 was obtained with a mean item-total correlation of 0.47. An even higher reliability coefficient was obtained for the patient sample studied here; the alpha was 0.93 for this group.

Cantril Self-Anchoring Ladders-a method of establishing overall life satisfaction developed by Cantril [35]. Respondents were shown a ‘ladder of life’ with 10 rungs; 0 represents the worst possible life-as the person conceives it-and 10 represents the best possible life. Respondents indicated where they were on the ladder at the present time, where they were in the past (before the transplant), and where they expect to be in the future. This measure, which allows the patient to determine his or her own baseline of life satisfaction, has been widely used in the study of life satisfaction.

The measures of psychological adjustment were: Projile of Mood States (POMS)-assesses transi-

ent, distinct mood states by self-report on an adjec- tive checklist [36] yielding six factors: Tension- Anxiety, Depression-Dejection, Anger-Hostility, Fatigue-Inertia, Vigor-Activity, and Confusion- Bewilderment. The original 65-item POMS has shown internal consistencies ranging from 0.84 to 0.95, and test-retest reliabilities from 0.65 to 0.74 for 20 days, and 0.43 to 0.53 for 9 weeks [37, 381. The shortened 37-item POMS which was used here [39] was developed on a validation sample of terminal cancer patients and has shown correlations with the original full-length scales of 0.95, indicating stability of the briefer version. In the current study of BMT


recipients, very good levels of Cronbach’s coefficient alpha were obtained for the shortened scales indicating the scale’s reliability for this population. The alphas for the six POMS subscales were: Tension-Anxiety (0.86) Depression-Dejection (0.88), Anger-Hostility (0.86) Fatigue-Inertia (0.91), Vigor- Activity (0.91) and Confusion-Bewilderment (0.74).

The total POMS is a measure of overall negative mood and is obtained by reversing the coding of the vigor-activity subscale and then adding together the negative ratings on the individual subscales. The total POMS attained an alpha of 0.94.

Positive and Negative Affect Scales-Developed by Bradburn [40] as a measure of psychological well- being, the Affect Balance Scale consists of a 5-item positive affect cluster and a 5-item negative cluster which have been found to be orthagonal in a number of factor analytic studies [40, 331. When summed algebraically, these two scales yield a single measure of well-being. However, since the Negative Affect Scale has appeared to be essentially more a measure of psychiatric disturbance than affect in previous research, [32,40,41], the scales were treated separately in this study. The alpha reliability coefficients obtained for this current group of respondents were 0.83 for the Positive Affect Scale and 0.60 for the Negative Affect Scale.

Other measures

Basic background variables from the patient’s medical record which were included in the analysis were sex, age and age at BMT. A self-rating scale on the respondent’s current health status was also included. Consisting of 4 items describing the individual’s feelings of health or illness, this scale comes from a 20-item questionnaire developed by Stewart, Hayes and Ware [42] for use in studies of patients in various practice settings. The measure asked the respondents to rate each item on a scale of 1, ‘definitely true’, to 5, ‘definitely false,’ producing a total health status score with a possible range from 4

to 20. In the present study, the 4-item scale was found to have an alpha of 0.88.

RESULTS

Table 1 summarizes the changes that respondents reported regarding role performance before and after bone marrow transplantation. In the table, persons are categorized on each role as either (a) never having had it; (b) having the role before BMT but not after (lost); (c) not having the role before BMT but having it after (gained); or (d) having the role before and after BMT (retained). The least change occurred in the roles of family member, friend, and home maintainer. The greatest loss was reported in the roles of student and worker.

The differences between men and women respondents regarding these role transitions were examined through a series of chi square analyses. Gender and transitions were related for the worker role. (x’ (3) = 15.13, P ~0.01) and the volunteer role, (x’ (3) = 6.56, P = 0.05). Females were more likely than males to never have had the worker role (19.2% vs 3.9%) and they were less likely to have maintained the role (34.6% vs 63.2%). Males were more likely to never have had the volunteer role than were females (82.7% vs 61.5%).

Regarding the age of respondents at the time of their BMT, a one way analysis of variance using age at BMT as the independent variable and role tran- sition as the dependent variable was statistically significant (F 3, 123) = 17.07, P < 0.001). Using a post hoc range test, the respondents who had never had particular roles were significantly older than those who maintained roles and the ‘never had’ group was significantly older than the ‘lost’ or ‘gained’ groups.

The extent to which these various roles were valued by the respondents, and the changes in importance attributed to each role before and after BMT, were analyzed through a comparison of group means.

Role

Table I. Summary of role transitions of BMT survivors

Role outcome

Never had Lost Gained Retained

Student

Worker

Volunteer

Categiver

Home maintainer

Friend

Family member

Religious participant

Hobbyist/amateur

Participant in organizations

(5?2)

$5,

(35,

103 (76.9)

(?8,

118 (89.4)

(3?8)

$7,


Table 2. Correlations ktween quality of life outcomes and retention of roles

Role variable

Quality of life outcome variable

Total retained

Total retained weighted by imoortance

Total retained weighted by oerformance

SLDS Current satisfaction Future satisfaction Positive affect Negative affect Total negative mood (POMS)

0.27*** 0.33.” 0.32”. 0.26’** 0.38*** 0.31*** 0.24*** 0.38”’ 0.29*** 0.23’. 0.21** 0.22..

-0.08 -0.04 -0.06 -0.25” -0.27** -0.27**’

Note: Total retained = the number of roles retained during the BMT period. +P < 0.05.

_ l *P $0.01. ***p < 0.001.

Examination of these group means shows that all of the roles increased in importance to some extent. An emphasis on importance of ‘basic’ roles was found. Using the post-BMT values, the most important roles were: (1) family member, (2) caregiver, (3) worker, and (4) friend. Additionally, a series of paired r-tests were calculated that examined differences in importance ratings given by persons who had the role before and after BMT (the role maintainers). While inspection of the direction of the t values also revealed that all of the roles gained in importance, statistically significant differences were found in the increased importance assigned to the worker, t(68) = -2.42, P < 0.05, home maintainer t(lOO) = -3.55, P ~0.01, friend t(100) = -2.65, P < 0.01. and family member roles ~(116) = 4.72, P < 0.001.

The shift in level of performance of the roles was also examined. The group level means reveal that perceived performance declined in some roles (worker, caregiver, home maintainer, friend, and hobbyist/amateur) and increased in others (student, volunteer, family member, religious participant, and participant in organizations). Only one role showed a significant decline by persons who retained it throughout the BMT experience; performance in the hobbyist/amateur role decreased, f = 3.12(76). P < 0.01.

Table 2 presents a series of Pearson correlations between the study’s quality of life measures and the variables of role retention and role loss in order to examine the question of whether role retention or loss is related to the quality of life of bone marrow transplant survivors. Role retention is measured in two ways: (a) as a simple count of the number of roles retained during the BMT period, and (b) as a weighted summary of each role retained

by its importance rating. As predicted, role retention was significantly related to high quality of life as measured by the Satisfaction with Life Domains Scale, and current and future satisfaction as measured by Cantril Ladders and Positive Affect. While role retention was significantly negatively correlated with high negative mood as measured by the Total POMS, it was not significantly related to Negative Affect.

Table 3 presents a closer examination of the importance of work. Participants were asked what effect their illness had on their job plans-none, slight, sizeable, or great. Using their responses to this question as a basis of categorization, a series of one-way analyses of variance were calculated. Significant differences were found on current and future satisfaction, Satisfaction with Life Domains, and total negative mood. In all cases, persons whose illness caused a great deal of impact on their job plans had the least satisfactory quality of life.

To further examine the relationships between the loss of roles and quality of life, the family member, home maintainer and caregiver roles were combined into a general family role cluster and the external roles of participant in organizations, volunteer, religious participant, and hobbyist/amateur were combined into a community role cluster. The worker role appeared to be so distinctive that it was considered alone. If individuals lost any of the roles in a cluster, they were coded as in the role loss category.

These dichotomous role loss variables were correlated with the quality of life variables separately for men and women as shown in Table 4 through a series of point biserial correlations. For men the loss of the work role was correlated at a statistically significant

Table 3. Effects of BMT-related changes in job plans on psychosocial outcomes

Amount of change in job plans

Outcome variable

SLDS Current satisfaction Future satisfaction Positive affect Negative affect Total negative mood

None Slight Sizeable Great 0=40 n =32 n = I8 n =38 F 4

110.53” 97.17b 92.78’ 87.76b 12.89*‘* 3122 8.41” 7.31 6.56b 6.08b 9.81”’ 3122 8.77” 8.00 7.94 6.97b 6.89”* 3122 6.40 5.87 6.00 5.73 0.50 3123 3.53 4.38 3.94 3.78 1.10 3123 6.20’ 7.74 8.64 8.49b 3.79.’ 3117

Note: Groups with the superscript ’ are significantly different from groups with the superscript b at P = 0.05.

l P b 0.05. l *P GO.01. l **P < 0.001.


Table 4. Correlations between aualitv of life outcomes and work. familv and communitv roles lost for men and women

Role variable

Men (N = 81) Women (N = 53)

Quality of life Work Family Community Work Family Community outcome variables roles lost roles lost roles lost roles lost roles lost roles lost

SLDS -0.43*** -0.13 -0.20 -0.41*** 0.10 0.18 Current situation -0.40*** 0.06 -0.23* -0.23’ 0.03 0.05 Future satisfaction -0.3w* -0.09 -0.20. 0.08 0.19 0.03 Positive affect -0.21* -0.08 -0.31** -0.10 0.16 0.06 Negative affect 0.25’ 0.22. 0.16 0.19 0.05 -0.04 Total negative mood (POMC) 0.41*** 0.19. 0.26. 0.06 0.02 0.03

*P $0.01. *r/J $0.01. l **f < 0.001.

level across all of the quality of life measures with an average level of correlation at 0.34. However, this was not true for women (average r = 0.15). For women, loss of the work role was strongly correlated with the Satisfaction with Life Domains Scale (r = 0.41) as it was for men. However, of the other measures of quality of life, only the Cantril Ladder measure of current satisfaction (r = -0.23) was significantly correlated with a role loss for women.

Loss of the family role related to negative affect and total negative mood on the POMS for men but not for women. In fact, loss of the family role, which was a less likely event for women, did not correlate significantly with quality of life outcomes at all for women. Loss of the external community role was significantly related to all of the QOL measures for men, but not for any of the outcome measures for women.

DISCUSSION

The main hypothesis of this paper, that role retention is significantly related to higher quality of life, is supported by significant correlations of role retention with quality of life as measured by the Satisfaction with Life Domains Scale, current and future life satisfaction on Cantril Ladders, and by the Bradburn Positive Affect Scale. In terms of the measures of negative mood, while the Bradburn Negative Affect Scale was not significantly related to role retention, total negative mood as measured by the Profile of Mood States was inversely related to role retention at a statistically significant level.

Previous use of quality of life measures in assessing the outcomes of demanding medical interventions has tended to treat the changes in quality of life as simple direct short-term outcomes of the treatment. Little consideration has been given to individual differences in the ways that severe illness and radical treatment impact on people through changing their own particular life situations. However, examination of quality of life in long-term survivors emphasizes the need to consider changes in QOL measures as these are affected by changes in the person’s total life situation. The current study offers evidence that one of the key ways that quality of life is mediated at an individual level is in terms of the effects that illness and its treatment have on that person’s ability to continue to engage in valued role activities.

Another key finding of this study was the existence of sex differences in the patterns of role retention.

Among the BMT survivors, women were more likely than men to have never worked, and after BMT only about a third of those who had been employed were likely to continue to work as contrasted with two- thirds of the men. Men were less likely than the women to have been volunteers. This seems consistent with male and female roles in American society at large. While it is true today that many women are employed, men still are generally viewed as the primary providers for the family and are more often expected to engage in paid work leaving them with less time for volunteer activities. Further, work out- side the family is still viewed as more central to male than female identity [43].

This study also found that age made a difference in the types of roles occupied by long term survivors and whether they experienced role transitions after BMT. Respondents who were more likely to have never had particular roles were older than those who lost, gained, or maintained roles. The greater range of roles available to younger people in general as society has changed may have had something to do with this difference.

Survival of life-threatening disease has been shown previously to change a person’s perspective and the value that he or she places on various aspects of life [44]. After bone marrow transplantation, all of the roles asked about were seen as more important to some extent by the respondents. However, the roles of worker, home maintainer, friend and family member significantly increased in importance for those who retained them. While the patients who survived after BMT felt that their performance of a number of roles had deteriorated, the decline in perceived role performance was statistically significant only for those who had retained the hobbyist/amateur role since before their transplants. Examination of the open-ended questions on the questionnaire suggests that this is at least partly accounted for by loss of the ability to retain physically demanding hobbies such as playing various sports.

Further explorations of the relationship of role maintenance to quality of life were conducted through a grouping of roles in major logical clusters and through separate analyses by gender. The work role was treated separately, but other roles were combined into a general family role cluster and a community activities role cluster. For men the loss of the work role was significantly related to all of the quality of life measures. Loss of the work role was somewhat less generally important to women’s


quality of life as indicated by its significant relationships with only two of the QOL measures.

For women, loss in the family role cluster was not significantly related to any of the quality of life measures. However, it was significantly related to negative affect and total negative mood on the POMS for men. A similar pattern was found with respect to loss of the external community role cluster; this type of loss was significantly related to all of the QOL measures for men, but not for any of the outcome measures for women. Apparently, women survivors of treatment of their disease by bone marrow transplantation were less affected by associated role losses than men were. There are several possible explanations. This may be a reflec- tion of the women being better able to continue certain roles despite illness, a greater flexibility in role adaptation among women, or perhaps a greater dependence in men on their role activities in order for them to feel satisfied with their lives. This finding requires further research in order to better under- stand what it means.

Regarding broader questions of how bone marrow transplant survivors maintain their valued roles and how they adapt and survive a transplant procedure, the data available from the current cross-sectional follow-up study do not provide the basis for further answers. It is also difficult to draw conclusions from previous studies by other authors since they are limited by their design and their small sample size. For example, the dissertation study by Haber- man [28], based on interviews with 23 adult leukemia patients before BMT, suggests that the adaptation of patients may depend on the way that the illness experience is appraised and how that affects the type of coping used. This is consistent with the general literature about the importance of personal meaning in coping with stressful life events [45]. However, obtaining more detailed answers will require larger scale prospective longitudinal studies of BMT recipients which follow patients before, during, and after BMT. The authors are presently engaged in such a study, following BMT patients over a five-year period.

Despite the need to replicate and elaborate the findings of this initial pilot cross-sectional study in a longitudinal study, there are some implications that may be drawn for professional practice on the basis of this preliminary study. One of these inferences relates to an earlier discussion by Vess, Moreland and Schwebel [46] of some of the problems of disruptive role functioning based on a follow-up study of surviving married cancer patients and their families. Vess er al. [46] found that open communication in families helped in necessary role reassignments and in achieving more satisfying family relationships. They suggested that professionals should be encouraged to assist family members to communicate their needs and concerns more openly. Given the finding of the current study that role maintenance is related to perceived quality of life, the need for professionals to help cancer survivors and their families deal with psychological problems related to changes in the sick family member’s role functioning is further supported. The current study suggests that men in particular might profit from such help.

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Acknowledgements-This research was supported by a Biomedical Research Support Grant from the Johns Hopkins University, Grant PBR-40 from the American Cancer Society and Grant CA49218 from the National Cancer Institute.

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