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1.
Look at the future -perceptions of fertility counseling and decision-making among adolescents and their parents in the context of hematopoietic stem cell transplantation-experience of one major center for pediatric stem cell transplantation
Barnbrock, A., Hamannt, F., Salzmann-Manrique, E., Rohm, T., Lange, S., Bader, P., Jarisch, A.
Frontiers in pediatrics. 2023;11:1249558
Abstract
INTRODUCTION Increasing survival rates after hematopoietic stem cell transplantation (HSCT) in childhood should put focus on improving the quality of life as adults. An essential aspect is fertility and its preservation. In order to take advantage of the possibility of fertility preservation, fertility counseling should be provided to patients and their parents prior to gonadotoxic therapies. METHODS The aim of this survey was to analyze the impact of fertility counseling in pediatric stem cell transplantation in patients and their parents using questionnaires designed for the study questions. Fifty-one parents and 7 adolescent patients were interviewed between February 2019 and October 2021 about the counseling, their perceptions of fertility issues, and the nature of decision- making concerning fertility preservation. The study included patients with malignant (e.g., leukemia, lymphoma, neuroblastoma) and nonmalignant diseases (e.g., thalassemia, sickle cell disease, immunodeficiency) who received counseling on fertility preservation before HSCT based on an in-house standard and analysed the impact for both groups. RESULTS Two-thirds of the study participants were concerned about having children and grandchildren respectively; for half of all respondents, the topic of fertility and fertility preservation proved to be hopeful. Forty percent of the study participants were burdened by the risk of possible fertility limitations after HSCT. Concerns about fertility was particularly significant for parents whose children were advised to undergo fertility preservation. Parents of children <12 years found deciding on appropriate measures more difficult. Parents with children >7 years involved their children in the decision. All study participants agreed that fertility counseling had not negatively affected the parent-child relationship. More than 90% of all study participants were in favor of addressing fertility, its potential limitations and fertility preservation measures before HSCT. There was no significant difference between the malignant and the non-malignant cohort in all study questions. DISCUSSION Overall, the standardized fertility counseling provided in our center of pediatric stem cell transplantation resulted in high satisfaction among patients and their parents. Multiple counseling on infertility risk, including the younger patients in the decision-making and further options after gonadotoxic therapy may increase the satisfaction of the counseled patients and their parents.
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2.
Parent Psychological Distress is Associated with Symptom Burden and Health-Related Quality of Life in Children and Adolescents Undergoing Stem Cell Transplantation or Chimeric Antigen Receptor-T Therapy
Ward, J., Smith, J., Powers, K., Hellsten, M., Murray, P.
Transplantation and cellular therapy. 2023
Abstract
BACKGROUND Hematopoietic stem cell transplantation (HSCT) and chimeric antigen receptor T-cell (CAR-T) therapy are potentially curative treatment options for children with life-threatening conditions, but can result in a high symptom burden, poor health-related quality of life (HRQoL), and parent psychological distress. OBJECTIVES The purpose of this study is to describe, over time, the association between parent psychological distress with symptom burden and HRQoL among children undergoing HSCT or CAR-T therapy. STUDY DESIGN This multisite study employed a longitudinal, repeated measures design. English and Spanish-speaking parents and their children ages 2-18 years with planned HSCT or CAR-T therapy were eligible. Parents completed self-report measures of psychological distress (Beck Anxiety and Depression Inventories, Perceived Stress Scale) at 4 timepoints: pre-cell infusion, and days +30, +60, +90 after the child's cell infusion. The Memorial Symptom Assessment Scale and PedsQL Cancer Module were administered to children (parent-proxy for younger children) at corresponding timepoints. A symptom cluster called parent distress was created from each parent outcome using exploratory factor analysis. Longitudinal parallel process modeling was used to study the relationship between parent distress and child symptoms and HRQoL over time. RESULTS In total, 140 child/parent dyads (280 participants) were enrolled across 4 sites. Child mean age was 8.4 years/SD=5, 56.4% were male, primarily with an underlying diagnosis of malignancy (72.9%). Most parents were mothers (80.7%), mean age of 39 years/SD=8.1. Parent distress was consistently higher than normative means generated from non-clinical samples of adults. High frequency of suicidal ideation was reported by parents (38.5% at baseline, 37% at day +30, 27.4% at day +60. 33.6% at day +90). A significant relationship between parent distress, child HRQoL and child symptoms was observed at baseline and through day +90. CONCLUSION Findings suggest that parents experience clinically relevant psychological distress throughout their child's HSCT or CAR-T therapy and this parent distress is associated with child HRQoL and symptom scores. Increased psychoeducational support tailored to address parental psychological distress is needed and has potential to positively impact the child's HRQoL and symptoms.
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3.
Determining the symptoms and coping methods of patients at home after hematopoietic stem cell transplantation
Caliskan, K., Can, G.
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2022
Abstract
AIM: This descriptive study was conducted to determine symptoms experienced at home in the early period by patients who received hematopoietic stem cell transplantation (HSCT), identify coping behaviors used by the patients in the management of symptoms and assess the quality of life of these patients. METHOD The study included 200 patients who had received HSCT at a private hospital in Kocaeli in Turkey between October 2017 and November 2018 and been discharged. The data of the study were collected by using a patient information and interview form developed by the researcher, the Memorial Symptom Assessment Scale and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30. RESULTS The mean age of the patients was approximately 51, 39% (n = 78) of the patients were female, 61% (n = 122) were male, and the vast majority (82%) were married. The three most frequently experienced symptoms among the patients after being discharged were identified as pain (63%), weakness (48%), and loss of appetite (43%). It was found that the vast majority of the patients complied with coping behaviors reported in the literature, but these behaviors were partially effective. Clinical diagnosis, type of transplant, status of re-hospitalization of the being discharged, and number of problems experienced were identified as variables that were significantly effective on the treatment-related symptom experiences and many dimensions of the quality of life of the patients (p < 0.05). CONCLUSION It was determined that the patients who were included in this study experienced various symptoms on different levels and at different frequencies. Regarding the effectiveness of the approaches used by the patients in coping with the symptoms they experienced, it was determined that the approaches they used to cope with nausea-vomiting, fever and insomnia were effective, and those they used for weight loss and anxiety were ineffective.
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4.
Quality of life and informational needs for allogeneic hematopoietic stem cell transplant among patients and their caregivers visiting long-term follow-up clinic
Nakajima, S., Kamibeppu, K.
Blood cell therapy. 2022;5(2):35-44
Abstract
PURPOSE To examine the relationship between health-related quality of life (HRQOL) and fulfillment of informational needs among patients for allogeneic hematopoietic stem cell transplant (HSCT) and caregivers who visit long-term follow-up (LTFU) clinics within 1.5 years of post-HSCT. METHODS We conducted a cross-sectional survey at two university hospitals in Japan between May and December 2018 using self-administered questionnaires and medical records. Based on previous research and patient interviews, informational needs of patients and caregivers were categorized into general information, post-discharge treatments, side effects and complications, self-care, psychosocial problems, and social resources. The HRQOL of patients and caregivers was measured using the Japanese Functional Assessment of Cancer Therapy-Bone Marrow Transplant (for patients) and Caregiver Quality of Life Index-Cancer (for caregivers). In addition, the pooled-regression actor-partner interdependence model approach was employed to analyze the relationships using R ver.3.6.0. RESULTS A total of 16 patients and 14 caregivers were analyzed. The mean total score of the FACT-BMT was 91.0, and the mean total score of the Caregiver Quality of Life Index-Cancer was 88.2. For both patients and caregivers, fulfillment of informational needs regarding side effects and complications (estimates = 0.55, t (16) = 4.88, P < 0.001) and self-care (estimates = 0.73, t (13) = 5.02, P < 0.001) exerted actor effects on their HRQOL, whereas fulfillment of informational needs regarding psychosocial problems (estimates = 0.35, t (13) = 2.90, P = 0.012) exerted a partner effect on the mutual HRQOL. CONCLUSIONS Multidimensional physio-psychosocial approaches toward patients and their caregivers are important to enhance their HRQOL during the acute phase after HSCT. Detailed overviews of and methods to cope with patients' psychosocial issues should be provided before discharge, especially for caregivers unable to visit the LTFU clinics.
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5.
Nutritional status and quality of life in adults undergoing allogeneic hematopoietic stem cell transplantation
Cioce, M., Botti, S., Lohmeyer, F. M., Galli, E., Magini, M., Giraldi, A., Garau, P., Celli, D., Zega, M., Sica, S., et al
International journal of hematology. 2022
Abstract
Although the effects of malnutrition on morbidity and mortality in adult patients undergoing allogeneic hematopoietic stem cell transplantation are clear, the relationship with quality of life (QOL) is less clear. The purpose of this study was to assess the relationship between malnutrition and QOL. A prospective observational study was conducted in 36 adult patients undergoing allogeneic hematopoietic stem cell transplantation. Adapted criteria of the Global Leadership Initiative on malnutrition have been used for the diagnosis of malnutrition in clinical settings. A cancer linear analog scale was used to assess QOL. Overall QOL at 14 days after allogeneic hematopoietic stem cell transplantation was 37.1 (95% CI 2.9-45.39) in patients without severe malnutrition, versus 16.0 (95% CI - 6.6 to 38.6) in patients with severe malnutrition (p = 0.05). At discharge, it was 48.0 (95% CI 38.4-57.6) versus 34.0 (95% CI 4.1-63.9) (p = 0.27). The results of our study suggest that patients with severe malnutrition at discharge tend to have worse QOL. A larger cohort of patients is required to confirm this hypothesis.
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6.
Coping in Caregivers of Patients with Hematologic Malignancies Undergoing Hematopoietic Stem Cell Transplantation
Amonoo, H. L., Johnson, P. C., Nelson, A. M., Clay, M. A., Daskalakis, E., Newcomb, R. A., Deary, E. C., Mattera, E. F., Yang, D., Cronin, K., et al
Blood advances. 2022
Abstract
Caregivers of patients with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT) must cope with substantial caregiving burden, high rates of psychological distress, and diminished quality of life (QOL). However, data describing coping strategies pre-HSCT and the association between coping, QOL, and psychological outcomes in this population are lacking. We conducted a secondary analysis of data collected during a multi-site randomized clinical trial of a supportive care intervention in HSCT recipients and their caregivers. Caregivers completed the Brief COPE, Hospital Anxiety and Depression Scale, and the Caregiver Oncology Quality of Life Questionnaire to measure coping strategies, psychological distress, and QOL, respectively. We grouped coping into two higher order domains: approach-oriented (i.e., emotional support, active coping) and avoidant (i.e., self-blame, denial) We used the median split method to describe the distribution of coping and multivariate linear regression models to assess the relationship between coping and caregiver outcomes. We enrolled 170 caregivers, with a median (range) age of 53 (47-64) years. Most were White (87%), non-Hispanic (96%), and female (77%). Approach-oriented coping was associated with less anxiety (β=-0.210, p=0.003) and depression symptoms (β=-0.160, p=0.009), and better QOL (β=0.526, p=0.002). In contrast, avoidant coping was associated with more anxiety (β=0.687, p<0.001) and depression symptoms (β=0.579, p<0.001), and worse QOL (β=-1.631, p<0.001). Our findings suggest that coping is related to distress and QOL among caregivers of HSCT recipients even pre-transplant. Hence, caregivers of patients with hematologic malignancies undergoing HSCT may benefit from resources that facilitate adaptive coping with the demands of caregiving.
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Effect of Early Nutritional Support on Quality of Life by EORTC QLQ-C30 in Allogeneic Hematopoietic Stem Cell Transplantation
Inden, A., Tsukahara, T., Tachibana, E., Nagata, Y., Ono, T., Kato, A.
Blood cell therapy. 2022;5(4):107-115
Abstract
PURPOSE Increasing attention is being paid to the importance of nutritional management of allogeneic hematopoietic stem cell transplant (allo-HSCT) patients. However, few studies have conducted detailed evaluations of both nutritional intake and quality of life (QOL) in allo-HSCT patients. Therefore, we investigated the nutritional status and quality of life of our allo-HSCT patients. METHODS The subjects were 26 adults who underwent allo-HSCT at Hamamatsu University Hospital between August 2018 and October 2021. Early nutritional intervention was provided from the time of the decision to perform allo-HSCT to the time of discharge, and it incorporated regular QOL assessments. The analyzed indices were nutritional intake, anthropometric measurements, body mass index (BMI), grip strength, body composition analyzer (InBody S10) measurements, and blood laboratory values including transthyretin levels. QOL was assessed using the QLQ-C30 questionnaire of the European Organization for Research and Treatment of Cancer (EORTC) (version 3.0) and calculated according to the EORTC scoring manual. The indices were compared at pre-transplantation, 30 days post-transplantation, 60 days post-transplantation, and at discharge. The association between pre-transplantation nutritional status and QOL was examined. RESULTS The median hospital stay after transplantation was 97 days (range, 78-123 days). Energy intake was maintained at 31 kcal/day/kg through 30 days post-transplantation, 60 days post-transplantation, and discharge, and protein intake was maintained at 1.0 g/day/kg throughout all time periods. There was a significant positive correlation between the pre-transplantation transthyretin level and the 60-day post-transplantation QOL scores for "global health", "physical functioning", "cognitive functioning", and "emotional functioning", and there were significant negative correlations with "fatigue" and "pain" that indicated improvement. CONCLUSION Early nutritional management of allo-HSCT patients prior to transplantation allowed maintenance of nutritional intake, and higher pre-transplant transthyretin levels were associated with higher QOL scores at 60 days post-transplantation.
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8.
A Self-Help Manual for Psychological Distress and Quality of Life During a Haemopoietic Stem-Cell Transplant: An Effectiveness and Acceptability Pilot
Lawrence, R. J., Lee, S. J., Katona, L. J., De Bono, S., Norton, P. J., Avery, S.
Journal of clinical psychology in medical settings. 2022
Abstract
Haemopoietic stem-cell transplantation (HSCT) can be a highly distressing procedure that negatively impacts quality of life (QoL). Self-help interventions can help improve psychopathology and wellbeing in patients with physical illness, but have rarely been trialled with HSCT recipients. This study aimed to pilot the utility of a self-help manual intervention during the acute phase of HSCT. Forty autologous and allogeneic HSCT candidates were randomly assigned to a self-help manual intervention or treatment as usual (TAU). Psychological distress (BSI-18) and QoL (FACT-BMT-Vs4) were measured pre-, 2-3 weeks and 3 months post-HSCT. Linear mixed-effects analyses showed no significant group-time interaction for global QoL (p = .199) or global distress (p = .624). However, highlighting a protective role during admission, manual participants showed minimal QoL or somatic distress change at 2-3 weeks post-transplant compared with moderate-large effects for reduced QoL (d = 0.62) and increased somatic distress (d = - 0.81) for TAU patients. Thematic analysis suggests the manual helped prepare patients for transplant and provided strategies to improve distress and QoL. This pilot provides preliminary evidence for the benefit of a self-help manual during hospitalisation for a HSCT. More intensive, recovery-focussed care, however, may be needed to improve psychological health in the post-hospital period. Retrospectively registered trial (ANZCTR No. 12620001165976, 6th November 2020).
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9.
Evaluation of sleep disorders before and after transplantation in patients undergoing hematopoietic stem cell transplantation
Yavlal, F., Aras, Y. G., Ulaş, S. B.
European review for medical and pharmacological sciences. 2022;26(23):8935-8944
Abstract
OBJECTIVE Hematopoietic stem cell transplantation (HSCT) is an important curative treatment option for many hematologic diseases. Sleep disorders in patients with HSCT are a significant but often overlooked health problem. Therefore, this study aims to determine the frequency of sleep disorders in HSCT patients and to compare and evaluate the data before and after transplantation between autologous and allogeneic HSCT patient groups. PATIENTS AND METHODS Patients who were referred to the Bone Marrow Transplantation Centre Clinic at Medicana International Istanbul Hospital by other centres and those who were suitable for HSCT treatment according to evaluations were included in the study. The patients underwent allogeneic and autologous HSCT. The Pittsburgh Sleep Quality Index (PSQI), Epworth Sleepiness Scale (ESS) and Insomnia Severity Index (ISI) were applied to both groups before transplantation and on the 7th and 100th days after transplantation. RESULTS The PSQI total and sub-scale scores, ESS scores and ISI scores on the 7th and 100th days after transplantation were statistically significantly lower than the scores before transplantation. CONCLUSIONS Sleep disorders were significantly reduced in patients after HSCT. Moreover, the scores in the seven subscales of the PSQI statistically significantly decreased on the 7th and 100th days after transplantation, and sleep statistically improved and showed great improvement on the 100th day after transplantation. We believe that early detection and treatment of sleep disorders may be beneficial for this group of patients to improve their quality of life and response to treatment.
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10.
Implementation and evaluation of a nurse-allied health clinic for patients after haematopoietic stem cell transplantation
Nakagaki, M., Gavin, N. C., Hayes, T., Fichera, R., Stewart, C., Naumann, L., Brennan, J., Perry, N., Foley, E., Crofton, E., et al
Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2021
Abstract
PURPOSE Patients who undergo haematopoietic stem cell transplantation (HSCT) often have multiple health issues following hospital discharge. In many centres, outpatient follow-up is solely conducted by specialist physicians. We aimed to implement and describe the outcomes of a nurse-allied health multidisciplinary clinic. METHODS The clinic consisted of six disciplines-nursing, pharmacy, dietetics, physiotherapy, occupational therapy and social work. All allogeneic and high risk autologous HSCT patients were reviewed at 2 weeks after discharge and on day 100 post HSCT, with additional reviews as needed. Occasions of service, interventions, readmission data and physician satisfaction survey were collected prior to and after implementation. Additionally, patient feedback and quality of life survey (FACT-BMT) were collected during the first 6 months. RESULTS From July to December 2019, 57 patients were reviewed in the clinic (475 reviews, average 8.3 reviews per patient). Common interventions included the following: exercise programs by physiotherapist (n?=?111), diet prescription (n?=?103), counselling by social worker (n?=?53), medication lists provision (n?=?51), fatigue management (n?=?43) and nurse education (n?=?22). The clinic did not reduce patients' readmission rate; however, positive feedback from patients and physicians were reported. FACT-BMT results demonstrated that there are unmet needs, particularly fatigue management, sexual education and support, body images, back to work support and quality of life improvement. From discharge to day 100, there was no significant improvement in quality of life. CONCLUSIONS This clinic provides an innovative approach to patient-centred care in HSCT. It has been well received by patients who were supported by multidisciplinary interventions.