Psychosocial adaptation of patients and families following bone marrow transplantation: a prospective, longitudinal study

Abstract

Summary:Using a prospective, repeated measures design, this study investigated the psychosocial functioning of patients and a close relative pre-and post-allogeneic and autologous bone marrow transplantation (BMT). All patients (n = 28) undergoing BMT in a 1 year period, and their relatives, were interviewed 1 week pre-transplant and at 3, 6 and 12 months post-BMT, using quantitative and qualitative measures. Pre-transplant data revealed a high level of anxiety (61% with moderate to severe anxiety), and a low level of depression (14% with moderate to severe depression). Twelve patients died in the study period. For the surviving patients there was a statistically significant improvement in physical, psychological and social functioning. Most relatives (88%) reported considerable psychological distress pretransplant and at 3 months post-transplant, but this was largely resolved by 12 months post-transplant. Significant correlations between the relative's distress and patient's physical and psychological wellbeing were observed at 3 months post-transplant, but not at the other assessment points. The findings from this study will help in counselling patients and their relatives as to what to expect in the year following BMT. Keywords: psychosocial; outcome; BMT; families It has been well documented that bone marrow transplantation (BMT) is physically and psychologically demanding for patients. [1][2][3][4][5][6][7] The effects of BMT on donors 8 and on other family members has received less attention, 9 although evidence suggests considerable disruption to families. 10 Prospective longitudinal research that includes baseline assessments is required, 11 with greater emphasis on the process of psychosocial adjustment in both patients and families. 9,11 One of the first prospective studies of psychosocial functioning in BMT showed that functioning was most impaired at 90 days post-transplant, with most aspects of physical and psychosocial functioning restored after 1 year. 12 A further prospective study reported similar findings, with little difference in physical and psychosocial status when assessed at pre-BMT and 1 year post-BMT. 13 While mean differences on pre-BMT and 1 year scores were not sig- nificant, the use of means obscures possible significant changes that individual patients may experience. 13 An analysis of change scores between pre-and post-transplant for individual patients suggests many experience substantial changes between these two assessments, 13 although detailed longitudinal studies of individual adaptation are scarce. 11 Qualitative research methods have rarely been used when studying BMT patients, particularly in a prospective longitudinal manner. Qualitative research is often viewed as the antithesis of quantitative research, 14 being somehow 'unscientific' and unreliable. 15 However, quantitative and qualitative methods are better viewed as complementary, 14 especially when health and illness issues are being examined in small numbers of patients, 16 and offer a useful addition to the usual...

Psychosocial adjustment and quality of life among multiple myeloma patients undergoing evaluation for autologous stem cell transplantation

“…Among patients with other types of malignancies, the proportion that exceeded cutoff scores on screening measures of emotional distress varied across studies. For the most part, the levels of distress in the current sample are a bit higher than those reported in investigations that used the same instrument (HADS) to assess patients prior to autologous transplantation, 27,29 or in samples that were mixed for type of transplant [30][31][32] (see Table 5). Among the few exceptions, depressive symptoms were more common (30%) in the Wettergren et al 29 study and cases of anxiety were more prevalent (61%) in the Keogh et al 31 study.…”

“…For the most part, the levels of distress in the current sample are a bit higher than those reported in investigations that used the same instrument (HADS) to assess patients prior to autologous transplantation, 27,29 or in samples that were mixed for type of transplant [30][31][32] (see Table 5). Among the few exceptions, depressive symptoms were more common (30%) in the Wettergren et al 29 study and cases of anxiety were more prevalent (61%) in the Keogh et al 31 study. The results concerning physical functioning are not directly comparable, because different measures were used in previous investigations and the percentage of patients considered at risk for functional impairment was not reported.…”

“…This correspondence between emotional and physical symptoms may be less evident later in the course of treatment, however, because different aspects of functioning appear to have divergent trajectories of recovery. 28,31,57 In other words, after active treatment, functional deficits may improve at a different rate than emotional distress or other psychosocial concerns (eg, fear of recurrence, financial pressures).…”

“…[26][27][28][29] Rates of distress have been similarly elevated among more heterogeneous samples of patients assessed prior to receiving either autologous, allogeneic, or matched unrelated donor transplants. [30][31][32][33] Many patients also appear to experience compromised physical or functional status prior to autologous transplantation, although here too information is limited. 28,34,35 Most studies that evaluated patients prior to autologous PBSCT have relied on small sample sizes and, as noted, individuals with multiple myeloma were rarely included, in part due to exclusion of older patients from transplant regimens.…”

Adaptation of family caregivers during the acute phase of adult BMT

“…The overall level of distress of caregivers equaled that of the recipients, whereas caregivers experienced even greater difficulty with family relationships. A longitudinal study of 28 BMT recipients and a 'close relative,' 19 which included pre-transplant to 12 months post transplant, found that 88% of the caregivers were highly distressed pre-transplant as well as post transplant; this exceeded the number of BMT recipients who were equally distressed. Zabora et al 20 also examined an adaptation of both the recipient and the caregiver using structured interviews and standardized measures over a period of 24 months.…”