Вопросы гематологии/онкологии и иммунопатологии в педиатрии. 2024; 23: 116-122
Качество жизни и субъективное благополучие детей и ухаживающих за ними родителей на различных этапах аллогенной трансплантации гемопоэтических стволовых клеток
https://doi.org/10.24287/1726-1708-2024-23-3-116-122Аннотация
В данной работе представлены результаты изучения субъективной оценки пациентами и их родителями влияния заболевания детей и проводимого им лечения методом трансплантации гемопоэтических стволовых клеток (ТГСК) на качество повседневной жизни и ощущение ее благополучия, а также ассоциированных с ними индивидуальных и семейных психологических факторов. Полученные данные имеют особую актуальность для разработки долгосрочных комплексных программ психологического сопровождения пациентов и их реабилитации во время и после проведения ТГСК. Несмотря на неугасающий исследовательский интерес к теме динамики качества жизни пациентов разного возраста и с разными диагнозами в процессе ТГСК, следует отметить противоречия в полученных результатах, а также дефицит работ с лонгитюдным дизайном, предполагающим обязательную оценку исследуемых параметров до трансплантации. В статье представлены первые результаты проспективного исследования качества жизни и показателей субъективного благополучия пациентов 8–18 лет с онкогематологическими, иммунными и гематологическими заболеваниями и их родителей на этапе подготовки к трансплантации, а также на 3–4-й неделе и спустя 3 мес после ТГСК. Исследование одобрено независимым этическим комитетом и утверждено решением ученого совета НМИЦ ДГОИ им. Дмитрия Рогачева.
Список литературы
1. Скворцова Ю.В., Масчан А.А., Делягин В.М., Сидоренко Л.В., Цейтлин Г.Я., Володин Н.Н., Румянцев А.Г. Актуальные вопросы наблюдения, диагностики и реабилитации пациентоввопросы наблюдения, диагностики и реабилитации пациентов на отдаленных сроках после трансплантации гемопоэтических стволовых клеток. Российский журнал детской гематологии и онкологии 2014; (2): 13–8. DOI: 10.17650/2311-1267-2014-0-2-13-18
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8. Phipps S., Dunavant M., Lensing S., Rai S.N. Patterns of Distress in Parents of Children Undergoing Stem Cell Transplantation. Pediatric Blood Cancer 2004; 43 (3): 267–74. DOI: 10.1002/pbc.20101
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12. Arvidson J., Larsson B., Lonnerholm G. A long-termfollow-up study of psychosocial functioning after autologous bone marrow transplantation in childhood. Psychooncology 1999; 8 (2): 123–34. DOI: 10.1002/(SICI)1099-1611(199903/04)8:2<123::AIDPON344>3.0.CO;2-8
13. Phipps S., Dunavant M., Garving P.A., Lensing S., Rai S.N. Acute health related quality of life in children undergoing stem cell transplant: I, descriptive outcomes. Bone Marrow Transplant 2002; 29 (5): 425–34. DOI: 10.1038/sj.bmt.1703377
14. Phipps S., Dunavant M., Lensing S., Rai S.N. Acute health related quality of life in children undergoing stem cell transplant: II, medical and demographic determinants. Bone Marrow Transplant 2002; 29 (5): 435–42. DOI: 10.1038/sj.bmt.1703376
15. Kupst M.J., Penati B., Debban B., Camitta B., Pietrga D., Margolis D., et al. Cognitive and psychosocial functioning of pediatric hematopoietic stem cell transplant patients: a prospective longitudinal study. Bone Marrow Transplant 2002; 30 (9): 609–17. DOI: 10.1038/sj.bmt.1703683
16. Forinder U., Löf C., Winiarski J. Quality of life and health in children following allogeneic SCT, Bone Marrow Transplant 2005; 36 (2): 171–6. DOI: 10.1038/sj.bmt.1705021
17. Lindwall J.J., Russell K., Huang Q., Zhang H., Vannatta K., Barrera M., et al. Adjustment in parents of children undergoing stem cell transplantation. Biol Blood Marrow Transplant 2014; 20 (4): 543–8. DOI: 10/1016/j.bbmt.2014.01.007
18. Meyers C.A., Weitzner M., Byrne K., Valentine A., Champlin R.E., Przepiorka D. Evaluation of the neurobehavioral functioning of patients before, during, and after bone marrow transplantation. J Clin Oncol 1994; 12 (4): 820–6. DOI: 10.1200/JCO.1994.12.4.820
19. McQuellon R.P., Russell G.B., Rambo T.D., Craven B.L., Radford J., Perry J.J., et al. Quality of life and psychological distress of bone marrow transplant recipients: the 'time trajectory' to recovery over the first year. Bone Marrow Transplant 1998; 21 (5): 477–86. DOI: 10.1038/sj.bmt.1701115
20. Phipps S., Peasant C., Barrera M., Alderfer M.A., Huang Q., Vannatta K. Resilience in children undergoing stem cell transplantation: Results of a complementary intervention trial. Pediatrics 2012; 129 (3): e762–770. DOI: 10.1542/peds.2011-1816
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22. Kanellopoulos A., Hamre H.M., Dahl A.A., Fosså S.D., Ruud E. Factors associated with poor quality of life in survivors of childhood acute lymphoblastic leukemia and lymphoma. Pediatr Blood Cancer 2013; 60 (5): 849–55. DOI: 10.1002/pbc.24375
23. Brice L., Weiss R., Wei Y., Satwani P., Bhatia M., George D., et al. Health-related quality of life (HRQoL): the impact of medical and demographic variables upon pediatric recipients of hematopoietic stem cell transplantation. Pediatr Blood Cancer 2011; 57 (7): 1179–85. DOI: 10.1002/pbc.23133
24. Packman W., Weber S., Wallace J., Bugescu N. Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review. Bone Marrow Transplant 2010; 45 (7): 1134–46. DOI: 10.1038/bmt.2010.74
Pediatric Hematology/Oncology and Immunopathology. 2024; 23: 116-122
Quality of life and subjective well-being of children and caregivers at different stages of allogeneic hematopoietic stem cell transplantation
https://doi.org/10.24287/1726-1708-2024-23-3-116-122Abstract
This paper presents the results of our study of the subjective assessment of patients and their parents of the impact of disease and treatment with hematopoietic stem cell transplantation (HSCT) on the quality of their daily life and feeling of well-being, as well as of individual and family psychological factors associated with the quality of life and well-being. The data obtained from this study are particularly relevant for the development of long-term, comprehensive programs of psychological followup and rehabilitation of patients during and after HSCT. Despite a constant research interest in changes in the quality of life of patients of different ages and diagnoses undergoing HSCT, there are some discrepancies in the reported results and a lack of longitudinal studies where the parameters of interest are measured before transplantation. Here, were report the initial results of our prospective study that evaluated the quality of life and measures of subjective well-being of patients aged 8–18 years with hematological malignancies, immune and blood diseases and their parents during the preparation for transplantation, and then 3–4 weeks, and 3 months after HSCT. The study was approved by the Independent Ethics Committee and the Scientific Council of the Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology, Ministry of Healthcare of the Russian Federation.
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13. Phipps S., Dunavant M., Garving P.A., Lensing S., Rai S.N. Acute health related quality of life in children undergoing stem cell transplant: I, descriptive outcomes. Bone Marrow Transplant 2002; 29 (5): 425–34. DOI: 10.1038/sj.bmt.1703377
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18. Meyers C.A., Weitzner M., Byrne K., Valentine A., Champlin R.E., Przepiorka D. Evaluation of the neurobehavioral functioning of patients before, during, and after bone marrow transplantation. J Clin Oncol 1994; 12 (4): 820–6. DOI: 10.1200/JCO.1994.12.4.820
19. McQuellon R.P., Russell G.B., Rambo T.D., Craven B.L., Radford J., Perry J.J., et al. Quality of life and psychological distress of bone marrow transplant recipients: the 'time trajectory' to recovery over the first year. Bone Marrow Transplant 1998; 21 (5): 477–86. DOI: 10.1038/sj.bmt.1701115
20. Phipps S., Peasant C., Barrera M., Alderfer M.A., Huang Q., Vannatta K. Resilience in children undergoing stem cell transplantation: Results of a complementary intervention trial. Pediatrics 2012; 129 (3): e762–770. DOI: 10.1542/peds.2011-1816
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23. Brice L., Weiss R., Wei Y., Satwani P., Bhatia M., George D., et al. Health-related quality of life (HRQoL): the impact of medical and demographic variables upon pediatric recipients of hematopoietic stem cell transplantation. Pediatr Blood Cancer 2011; 57 (7): 1179–85. DOI: 10.1002/pbc.23133
24. Packman W., Weber S., Wallace J., Bugescu N. Psychological effects of hematopoietic SCT on pediatric patients, siblings and parents: a review. Bone Marrow Transplant 2010; 45 (7): 1134–46. DOI: 10.1038/bmt.2010.74
