Introduction
First author, year, country | Study design | Patient population | Main outcomes | Main results on allo-SCT |
---|---|---|---|---|
Amonoo 2019 [23], USA | Sequential qualitative interviews | 25 allo-SCT recipients at baseline and 21/25 at follow-up (100 days after SCT) | Positive psychosocial experience | Family support and deliberate participation in pleasant and meaningful activities were the two primary sources of positive psychological experiences after allo-SCT. At baseline, participants consistently reported gratitude for their donors while follow-up was consistently characterized by hope for cure. Participants related bidirectional relationships between positive psychological well-being experiences and completion of health behaviors over time. |
Andersson 2011 [24], Sweden | Prospective longitudinal, comparative | 202 SCT recipients: • Autologous: n = 145 (71%) • MAC: n = 25 (12%) • RIC: n = 32 (15%) | Symptoms and HRQL in the first year post-SCT | Overall: similar recovering in RIC and autologous groups; sign. worse scores in MAC group during the whole study period. At 1 year: symptom and functioning scores back to BL or better in RIC and autologous group; worse in the MAC group in 10 of the 29 scales. |
Bergkvist 2016 [25], Sweden | Qualitative interviews | 14 family caregivers of patients after allo-SCT | Family members’ life situation and experiences of care | The findings show the family members’ voice of the uncertainty in different ways, related with the unknown prognosis of the HSCT, presented as Being me being us in an uncertain time. Positive experiences such as freedom and security from home care were identified. Different strategies such as adjusting, having hope, and live in the present used to balance to live in an uncertain time. |
Bergkvist 2020 [26], Sweden | Qualitative interviews | 14 family caregivers of patients 16 weeks after allo-SCT | Family caregivers’ experiences of providing and receiving support during allo-HSCT | Four prerequisites for family caregivers’ ability to provide support: Individual characteristics influence the ability to be supportive, social context influences the ability to be supportive, medical information provides knowledge and a sense of participation and interaction with the healthcare organization provides a sense of participation. Family caregivers’ risk of experiencing a stronger sense of uncertainty and lack of participation is higher in the absence of the above-mentioned prerequisites. |
Bevans 2008 [27], USA | Prospective longitudinal | 76 allo-SCT recipients (54% RIC) | Symptoms in the first 100 days post-allo-SCT | Overall: multiple symptoms and high symptom distress at days 0 and 30 after transplant conditioning. By day 100: number of symptoms and total symptom distress comparable to BL. Prevalent symptoms: • BL: fatigue (68%); worry (68%) • Day 0: appetite change (88%); fatigue and insomnia (86%); highest number of symptoms (Mdn = 8 (1–11)] • Day 30: fatigue (90%) • Day 100: fatigue (81%) Symptom distress: highest at day 0, followed by day 30 |
Bevans 2014 [28], USA | Prospective longitudinal | 171 allo-SCT survivors ≥ 3 years | Physical and mental health status, HRQL and physical symptom distress, ≥ 3 years after allo-SCT | Overall: mean scores for physical and mental health and HRQL preserved relative to population norms at 3 years or more. Physical symptom distress: sign. predictor of worse physical and mental health status. Distress was significantly lower than healthy population values, and clinically meaningful: 73 (42.7%) subjects reported high levels of symptoms distress (>15), with a mean number of prevalent symptoms ranging across time from 12 (SD ± 3) to 14 (SD ± 4) symptoms (mean number of symptoms across the cohort: 8 to 10) |
Busemann 2017 [29], Germany | Retrospective chart review | 123 patients who died after allo-SCT | Somatic, psychic, and Spiritual needs | • About 50% of patients did not live more than 5 months. Two-thirds died within 14 months after SCT. • Major symptoms: weakness (48% at last admission; 40% 7 days before death), fatigue, and need for aid at daily activities. Severe pain, dyspnea, and obstipation were rare. • Measures of intensive care and i.v.-drug administration were applied to a significant proportion of patients. • Switch to a PC concept in 75/123 (61%) cases; 35% of artificial ventilation in the final phase of life. |
Button 2014 [30], Australia | Retrospective chart review; survey among advanced practice nurses | 40 allo-SCT recipients who relapsed and died | Patients characteristics, characteristics of PC/end-of-life care | • 50% of patients seen by PC service • Survey participants felt end-of-life discussions were left until the terminal phase. Participants believed early PC integration was beneficial for patients and their family. |
Cappell 2018 [31], USA | Retrospective chart review | 422 patients who died after allo-SCT | Documentation and timing of advance directive (AD); use of ICU and of mechanical ventilation after SCT; location of death | • Prevalence: AD documentation prior to death: 44%. • Associations: patients with ADs less likely to use the ICU during the transplant course (41% for patients with Ads versus 52% of patients without Ads; p = .03); less likely to receive mechanical ventilation at any point after SCT (21% versus 37%, p < .001); decreased ICU use at the end-of-life; more likely to die at home or in hospital as opposed to in the ICU (odds ratio, .44; 95% CI .27/.72). |
Cohen 2012 [32], USA | Prospective longitudinal, comparative | 164 SCT recipients: • Autologous: n = 49 (38%) • MAC: n = 49 (30%) • RIC: n = 53 (32%) | Symptoms and QoL, in the first 100 days post-SCT | Overall: MAC group showed more severe sleep disturbance and poorer QOL than autologous group. Patients with acute GvHD had sign. more severe symptoms. At day +100 post-allo-SCT: • RIC group: higher score for the “worst five symptoms” (fatigue, sleep disturbance, physically weak, drowsiness, and lack of appetite) and for physical weakness than autologous group • MAC group: higher scores for the “worst five symptoms,” for fatigue, and for physical weakness than autologous group |
Cusatis 2020 [33], USA | Prospective longitudinal | 184 allo-SCT recipients and survivors until 1-year post-allo-SCT | Decisional regret about allo-SCT and association with QoL and clinical outcomes (relapse, GvHD), before allo-SCT, at day +100, at month +6 and +12 post-allo-SCT | Decisional regret: 6% to 8% of patients expressed regret at day +100, month +6 and +12 post-allo-SCT; a total of 15% expressed regret at any time point. Associations: Regret was associated with: • Lower QoL scores at 6 months and 12 months (p < .001) • Lower baseline QoL and social well-being • Disease recurrence: 17.5% (95% CI, 5.5–29.7%) greater risk |
Dunn 2016 [34], UK | Qualitative interviews | 16 patients after allo-SCT | Live experience after allo-SCT | The Immediacy of Illness and Existential Crisis developed from participants’ experiences of critical events accompanied by enduring uncertainty continuing into the recovery period. Participants suffer major disruption to their lives physically, psychosocially, and emotionally, including facing their own mortality, without a sense of when they may resume the normality of their former lives. |
Prospective longitudinal | 90 SCT recipients and their family caregivers (FC): • Autologous: n = 30 • MAC: n = 30 • RIC: n = 30 | QoL and mood of patients and FC during hospitalization for SCT (from day-6 pre-SCT to day+8 post-SCT) [36]; Prognostic understanding and its association with QoL and mood [35] | QoL: sign. decline of patients’ and FC QoL Mood: sign. increase of patients’ and FC depression; anxiety in patients and FC stable. Prognostic understanding: • 88.9% of patients and 87.1% of FC reported it is “extremely” or “very” important to know about prognosis. • Prognostic understanding: more optimistic than the oncologist’s in 77.6% of patients and 71.7% of FC (p < 0.0001) • Association with QoL/mood: patients with a concordant prognostic understanding with their oncologists had worse QoL (β = − 9.4, p = 0.01) and greater depression at BL (β = 1.7, p = 0.02) and over time (β = 1.2, p < 0.0001). | |
Randomized controlled trial, non-blinded | 160 SCT recipients • Intervention: inpatient PC integrated with SCT care: n = 80 • Control: standard SCT care: n = 80 stratified by transplant type: autologous 50%, MAC 19%, RIC 31% | PC (intervention) group: • Sign. improvement in QOL (Functional Assessment of Cancer Therapy - Bone Marrow Transplantation, FACT-BMT: mean difference between groups − 6.82 (95% CI: − 13.48 to 0.16; p = 0.045), symptom burden, depression and anxiety symptoms at 2 weeks post-SCT • Sign. improvement in depression symptoms and post-traumatic stress symptoms at 6 months after SCT • Caregivers: improvement in depression symptoms at 2 weeks The effect of the intervention did not differ by transplant type. | ||
Prospective longitudinal, comparative | Allo-SCT recipients/ survivors: • T0 (pre-condition-ing) : n = 239 • T1 (day 100 post-SCT): n = 150 • T2 (1 year): n = 102 • T3 (5 years): n = 45 Control group (general population) drawn from large representative samples in Germany, age- and gender-matched | Global fatigue: • T0 to T1: sign. increase (t = 3.85, p < 0.001) • T1 to T2: sign. decrease (t = − 2. 92, p = 0.004), then stable • T0 to T3: non-sign. difference (t = 0.68, p = 0.497). • Allo-SCT vs. general population: higher global fatigue at T0 (t = − 6.02, p < 0.001) and T3 (t = − 2.50, p = 0.014); meaningful effect sizes (d ≥ 0.5). • Predictors of fatigue: acute and chronic GvHD at T1 and T2, respectively Depression: • T2 to T3: sign. increase of prevalence rates from 12 to 30% • Allo-SCT vs. general population: sign. lower RR at T0 (RR = 0.56; 95% CI 0.4/0.8) and T2 (RR = 0.47; 95% CI 0.3/0.8); at T1 and T3: non-sign. Anxiety: • T0 to T1: sign. decrease of prevalence rates of anxiety from 29 to 19% • T1 to T2/T3: stable • Allo-SCT vs. general population: sign. increased at T0 (RR = 1.31; 95% CI 1.02/1.68); from T1 on: non-sign. Symptom clusters (SC): 3 stable SC (present at 3 consecutive time points): rest-tired-weak-dyspnea-loss of appetite, tense-worried-irritable-depressed, and nausea-vomiting PTSD symptomatology: • 15% met the criteria for PTSD at least once during the course of assessment. • 52% showed diagnostic relevant levels of intrusion, 30% of avoidance, and 33% of arousal at least once. • Sign. predictors at all time points: being impaired by pain (γ = 2.89, p < 0.01), pain level (γ = 0.63, p = 0.02), and being female (γ = 3.81, p < 0.01) • Sign. predictors at T2: acute and chronic GvHD, longer hospital stay Cancer-and-treatment-specific distress (CTXD): sum score of CTXD was highest at T0, then decreased by T1 (γ = −.18, 95% CI −.26/−.09), and by T2 (γ = −.10, 95% CI −.20/−.00). Subscales: uncertainty, family strain, and health burden were rated most distressing during SCT. Fear of recurrence: • Prevalence of high fear of recurrence: T0: 36%; T1: 24% of patients; T2: 23% • Predictors: T0: being married (b = 2.76, p = 0.026), female gender (b = 4.45, p < 0.001), and depression (b = 4.44, p < 0.001) were significantly associated with FCR at baseline. T1: depression (b = 6.46, p < 0.001). T2: female gender (b = 6.61, p = 0.008), higher depression (b = 4.88, p = 0.004) • Associations: fear of recurrence and lower physical functioning (p = 0.019), role functioning (p = 0.003), emotional functioning (p=0.001), cognitive functioning (p = 0.003), social functioning (p=0.001), and global QoL (p < 0.001). | ||
Grulke 2010 [43], Germany | Prospective longitudinal; survey among physicians | 136 allo-SCT recipients (72 died during the 2-years follow-up) | Comparison of physician prognostic estimates and patient survival | Physicians’ estimates associated with overall survival (univariate Cox regression: hazard ratio = 1.51, 95% CI = 1.24–1.82) |
Han 2019 [44], USA | Retrospective chart review | 21 458 hospitalized SCT recipients (40% allo-SCT) | General prevalence, temporal trends, and predictors of PC use from 2008 to 2014 | Rate of PC use: • Among SCT: 1.30% (278/21 458) • Among allo-SCT: 1.95% Rate of PC use from 2008 to 2014: • Among SCT: sign. increase (annual percentage change: 12.96%) • Among allo-SCT: sign. increase (annual percentage change: 16.45%) Predictors of higher PC use in allo-SCT: higher comorbidities (OR = 3.19; 95% CI 1.77/5.77; p = .0001) and GvHD (OR = 2.04; 95% CI 1.36/3.06; p = .0006) |
Hefner 2014 [45], Germany | Cross-sectional | 41 allo-SCT recipients /survivors (mean time after transplantation: 614 days (25 to 2 070 days)) | Distress (anxiety, fear of progression, depression, PTSD) | Prevalence rates: symptoms of distress in total: n = 18 (44%), of which: symptoms of anxiety: n = 11 (27%); fear of progression: n = 12 (29%); symptoms of depression: n = 11 (27%); symptoms of PTSD: n = 6 (15%) Associations: age < 55 years significantly associated with fear of progression (p = 0.004). No association between distress and acute or chronic GvHD or time after allo-SCT |
Heinonen 2005 [46], Finland | Survey | 109 allo-SCT recipients | Identification of stressors | Identification of 8 stress clusters (from the most severe to the least severe): change of life and impact of long-lasting treatment; side effects; distress related to treatment outcome and physiological status; family-related stress; fear of death and depressive thoughts; other concerns; negative social support; and stress related to lack of information and the medical staff. |
Loggers 2016 [47], USA | Prospective longitudinal | 22 allo-SCT recipients | Feasibility and acceptability of pre-SCT early PC | • Comfort with early PC: high (82% very comfortable). • Mood, sense of hope: stable or improved subjective mood and sense of hope • Follow-up surveys (60 day 60 and 90): 4 (20%) admitted to the ICU before day 100 and 3 (15%) received life-support measures. 5 (25%) died with median follow-up of 14 months. |
Scherwath 2013 [48], Germany | Prospective longitudinal | 102 allo-SCT recipients | Cognitive function (attention, memory, executive function, fine motor function), at T0, T1 (100 days), and T2 (1 year) | Comparison with test norms: below test norms in up to 50% of the test scores. Patients were mostly impaired on word fluency (24%, T0), fine motor function, and verbal delayed recall (19% each, T2). Over time: partial improvement in performance (i.e., visual span forward, verbal learning, and word fluency). However, from T0 to T2, 16% of the patients showed reliable decline on ≥3/14 test scores. Associations: no associations with conditioning intensity, total body irradiation, GvHD, cyclosporine treatment, and length of hospital stay for most of neuropsychological subtests |
Schulz-Kindermann 2007 [49], Germany | Prospective longitudinal | 39 allo-SCT recipients | Cognitive function (attention, memory, executive function), at T0 and T1 (100 days) | Comparison with test norms: mostly no sign. differences at T0 or T1, except verbal long-term memory (T0 and T1) and visual working memory (T1) below norm. Over time: sign. prolonged simple reaction time Associations: no association with extent of pretreatment, GvHD, or conditioning protocol |
Valkova 2016 [50], Czech Republic | Retrospective chart review | 590 allo-SCT recipients (64% MAC, 36% RIC) | QoL (median time from allo-SCT to questionnaire completing: 3.8 years [range: 0.2 to 21.6]) | Overall QoL: lowest score immediately after allo-SCT, with subsequent higher score after 100 days, followed by lower score in the period between 1 and 2 years, and then a sustained increase. Scores: 73% of the maximum values at 1 year, 80% at 3 years, and 82% at 5 years. Predictors of worse QoL: acute and chronic GVHD in the last 6 months (regardless of the extent); increasing age |
Wang 2017 [51], USA | Retrospective chart review | 602 SCT recipients (39% allo-SCT) | Advanced directives (AD) and/or Physician Orders for Life-Sustaining Treatments (POLST) completion, PC consultation, hospice enrollment | Prevalence of PC consultation: 19% (n = 114) of SCT patients, with 83% (n = 95) occurring in the hospital. Sign. difference between transplant types with 11% of allo-SCT (n = 68) and 8% of autologous SCT (n = 46) receiving PC AD/POLST completion rate: • 44% of SCT patients (n = 267) • Allo-SCT: sign. greater rate than autologous SCT (OR, 1.56; 95% CI, 1.12 to 2.17; p = .008) Hospice enrollment rate: 15% (n = 17) |