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1.
Feasibility of a new model of care for allogeneic stem cell transplantation recipients facilitated by eHealth: The MY-Medula pilot study
Redondo, S., De Dios, A., Gomis-Pastor, M., Esquirol, A., Aso, O., Triquell, M., Moreno, M. E., Riba, M., Ruiz, J., Blasco, A., et al
Transplantation and cellular therapy. 2023
Abstract
BACKGROUND The use of allogeneic stem cell transplantation (allo-SCT) for the treatment of hematologic diseases is steadily increasing. However, allo-SCT has the downside of causing considerable treatment-related morbidity and mortality. Mobile technology applied to healthcare (mHealth) has proven to be a cost-effective strategy to improve care and offer new services to people with multimorbidity, but there are few data on its usefulness in allo-SCT recipients. OBJECTIVE The aim of this report was to describe a new integrated healthcare model facilitated by an mHealth platform, named EMMASalud-MY-Medula, and to report the results of a le. STUDY DESIGN The MY-Medula platform development approach consisted of 4 phases. Firstly, patient and healthcare professional needs were identified and technological development and pre-testing tests were conducted (phases 1-3, January 2016-March 2021). Then, a non-randomized, prospective, observational, single-center pilot study was conducted (October 2021-January 2022) at the adult Stem Cell Transplant Unit of a tertiary university hospital. RESULTS Twenty-eight volunteer allo-SCT recipients were included in the pilot study. Fifty percent were outpatients in the first-year post-SCT and the remaining 50% were affected by steroid-dependent graft-versus-host disease (SR-GVHD). All patients used MY-Medula application during the two-month follow-up period with a median number of visits to the application of 143 (range 6-477). A total of 2067 self-monitoring records were made, and 205 text messages were received, most of them related to symptoms description (47%) and doubts about medication (21%). In 3.4% of the cases drug dose adjustments were performed by the pharmacist because of dosing errors or interactions. At the end of the study, a 6-question Likert-type questionnaire for patients and a 22-question test for healthcare professionals showed a high degree of satisfaction (95% and 100% respectively) with the new healthcare pathway. CONCLUSIONS Re-engineering allo-SCT recipients follow-up into an integrated, multidisciplinary model of care facilitated by mHealth tools is feasible and has been associated with a high usability and degree of satisfaction by patients and healthcare professionals. A randomized trial aiming to determine the cost-effectiveness of MY-Medula-based follow-up post-SCT is currently enrolling participants.
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2.
The Prospective Effects of Coping Strategies on Mental Health and Resilience at Five Months after HSCT
Corman, M., Dambrun, M., Rubio, M. T., Cabrespine, A., Brindel, I., Bay, J. O., Peffault de La Tour, R.
Healthcare (Basel, Switzerland). 2023;11(13)
Abstract
OBJECTIVES Hematopoietic stem cell transplantation (HSCT) is a stressful event that engenders psychological distress. This study examines the prospective effects of coping strategies during hospitalization on resilience and on various mental-health dimensions at five months after transplantation. METHODS One hundred and seventy patients (M(age) = 52.24, SD = 13.25) completed a questionnaire assessing adjustment strategies during hospitalization, and 91 filled out a questionnaire five months after HSCT (M(age) = 51.61, SD = 12.93). RESULTS Multiple regression analyses showed that a fighting spirit strategy positively predicted resilience (p < 0.05), whereas anxious preoccupations predicted anxiety (p < 0.05), poorer mental QoL (p < 0.01), and were associated with an increased risk of developing PTSD (OR = 3.27, p < 0.01; 95% CI: 1.36, 7.84) at five months after transplantation. Hopelessness, avoidance, and denial coping strategies were not predictive of any of the mental health outcomes. Finally, the number of transplantations was negatively related to a fighting spirit (p < 0.01) and positively related to hopelessness-helplessness (p < 0.001): Conclusions: These results highlight the importance of developing psychological interventions focused on coping to alleviate the negative psychological consequences of HSCT.
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3.
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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4.
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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5.
Analysis of the benefit of gonadotropin-releasing hormone agonist treatment in premenopausal women undergoing hematopoietic cell transplantation
Han, R., Song, Z., Li, H., Wang, C., Zhang, L., Yang, X.
Scientific reports. 2023;13(1):14497
Abstract
Gonadotropin-releasing hormone agonist (GnRHa) appears to exhibit ovarian protection during chemotherapy for malignant tumors. The purpose of this study was to analyze the benefits of GnRHa in premenopausal women undergoing hematopoietic cell transplantation (HSCT). Candidates for myeloablative chemotherapy HSCT requiring fertility preservation in the Gynecological Endocrinology Clinic of Peking University People's Hospital from December 2011 to December 2021 were retrospectively analyzed. Patients who chose to receive GnRHa treatment were given at least 2 courses of a 3.75-mg dose of a GnRHa before myeloablative chemotherapy, and patients who chose not to receive GnRHa treatment were included in the control group. All patients were monitored for menstruation return and menopause-related symptoms, and ovarian function tests [follicle-stimulating hormone (FSH), luteinizing hormone, and estradiol] were performed 6-12 months after HSCT. In addition, we assessed the vaginal bleeding of patients in the laminar air-flow room (LAFR). A total of 234 cases were included in this study: 77 cases in the treatment group and 157 cases in the control group. The incidence of vaginal bleeding in the LAFR in the treatment group was significantly lower than that in the control group (24.68% vs. 79.62%, P < 0.001). The menopausal symptoms of the patients in the treatment group were reduced after transplantation (46.75% vs. 19.75%, P < 0.001). There was no difference in visible follicles by follow-up ultrasound in the two groups after HSCT (16.88% vs. 13.38%, P = 0.474). The level of FSH at 6-12 months after transplantation was lower (98.00 mIU/ml vs. 117.53 mIU/ml, P = 0.001). The proportion of patients with FSH < 40 mIU/ml did not differ between the two groups. One patient in the treatment group recovered spontaneous menstruation, while none recovered spontaneous menstruation in the control group (1.30% vs. 0%, P = 0.329). The use of GnRHa may relieve menopause-related symptoms and reduce vaginal bleeding in the LAFR and breakthrough bleeding after transplantation. GnRHa treatment can reduce the level of FSH after myeloablative chemotherapy, but it cannot reduce the incidence of premature ovarian failure in women of reproductive age following myeloablative HSCT.
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6.
Pharmacotherapy for the Prevention of Depression and Behavioral Side Effects in Hematopoietic Stem Cell Transplant Patients
Mumby, P., Adams, W., Smith, S., Rao, M., Stiff, P.
Transplantation and cellular therapy. 2023
Abstract
BACKGROUND Depression and decreased quality of life (QOL) develop in approximately 30% of non-depressed hematopoietic stem cell transplant (HSCT) patients early after transplant. To potentially prevent this complication, we conducted a prospective randomized trial to assess whether prophylaxis of non-depressed HSCT patients with the antidepressant sertraline (SER) in addition to supportive psychotherapy starting at admission for transplant decreases the risk of depression and improves QOL. OBJECTIVES The primary objective of the study was to see whether there was added benefit of SER versus placebo to routine supportive psychotherapy on the development of depression in patients receiving HSCT, and secondarily whether there was impact on patient reported QOL and survival. STUDY DESIGN The study was conducted at a single-site academic medical center. We randomized 123 non-depressed HSCT patients (1:1) in a Phase III double blind study to receive SER starting at 50 mg daily with possible dose escalations to 200 mg per day, or placebo, beginning on admission for HSCT for 12 weeks, along with supportive psychotherapy in both groups. Depression (Beck Depression Inventory-II, BDI-II) and QOL (Functional Assessment of Cancer Therapy-BMT, FACT-BMT) were assessed prior to HSCT, and weekly to week 12. A multivariable linear mixed-effects model was used to estimate the mean change in Beck Depression Inventory (BDI-II) scores as a function of elapsed time since baseline, treatment assignment, and their interaction. The same process was used to assess treatment effects on all quality of life scores from the FACT assessment. A Kaplan-Meier curve was used to estimate the probability of survival for each group following initiation of treatment. A follow-up Cox proportional hazards model was used to estimate the rate of mortality between the two groups. RESULTS We did not see a benefit to SER in our study in either diminishing the risk of depression or improved QOL or survival outcomes. CONCLUSIONS Based on our findings, we can only recommend early evaluation of HSCT patients for depression and antidepressant use be reserved for patients with evidence of clinical depression unless additional randomized trials can confirm the effects of early antidepressant therapy on mood and QOL in this vulnerable group. Future research in this area would be improved by systematic monitoring of medication adherence, identification of the optimal dose of SER (or other antidepressant) and inclusion of psychotherapy outcomes when relevant, which were limitations in this study.
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7.
Physical Activity Compliance to American Cancer Society Recommendations Amongst Hematopoietic Stem Cell Transplant Survivors
Mead, L. E., Kelly, D. L., Dahl, W. J., Colee, J. C., Merchant, A., Weaver, M. T., Wingard, J. R., Farhadfar, N.
Hematology/oncology and stem cell therapy. 2023;16(4):358-365
Abstract
BACKGROUND AND OBJECTIVES The aims of this study were to determine the extent to which hematopoietic cell transplantation (HCT) survivors adhere to the American Cancer Society recommendations for weekly physical activity and identify potential demographic and transplant characteristics associated with the lack of compliance. METHODS This cross-sectional study included adults who had undergone HCT and were at least 1 year post transplantation. Physical activity was assessed using the screening tool of the Block 2014. The type of activity, frequency, and intensity were converted into the metabolic equivalent of task (MET) scores (0-499.0 MET min/week, inadequate activity; 500-1000 MET min/week, adequate activity; >1000 MET min/week, highly vigorous activity). RESULTS Participants (n = 81) reported a median MET score of 153 min/week, and 83% failed to reach the physical activity guideline of >500 MET min/week. Only 17.3% met the ACS recommendations, with three reporting above 1000 MET min/week. Median daily moderate and vigorous physical activity minute totals were 18.0 and 5.9 min/d, with 85.2% and 60.5% of participants involved, respectively. The median total physical activity energy expenditure was 744 kcal/d. Only race was associated with MET score, with Whites reporting higher MET scores. CONCLUSION Most HCT survivors assessed in this study did not meet the ACS physical activity recommendations. These findings reinforce the need to incorporate screening for physical activity into HCT survivorship care, offer counseling to those who do not meet the recommended levels, and encourage a physically active lifestyle among HCT survivors.
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8.
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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9.
Variations in provision of psychological care to hematopoietic cell transplant recipients: results of a national survey of UK transplant centers
Naidoo, R., Low, J., Rennoldson, M., Danby, R., Leonard, H., Madrigal, A., Lee, J., Anthias, C.
Bone marrow transplantation. 2022
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10.
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.