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1.
J Pediatr Hematol Oncol ; 43(1): e56-e63, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33065710

RESUMO

BACKGROUND: The importance of health-related quality of life (HRQoL) in patients with acute lymphoblastic leukemia (ALL) has increased in recent years. This study aimed to assess HRQoL in children with ALL, affecting factors, and the relationship between parent proxy-report and child self-report HRQoL. MATERIALS AND METHODS: A total of 59 children and their parents (both mother and father) were enrolled in this cross-sectional study. Turkish version of the Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Modules were used to determine HRQoL. RESULTS: According to subscales of the self-report form, nausea and operational anxiety scores differed significantly by the treatment status; communication score varied considerably by the hospitalization length of stay; pain and hurt, cognitive problems, and perceived physical appearance scores differed significantly by the maternal chronic disease status (P<0.05). The presence of maternal chronic disease was significantly related to the total score of the parent-proxy report (mother) (P<0.05). There was a moderate correlation between total scores of child and mother (P<0.05, r=0.419) but not with the father. CONCLUSION: Children on-treatment had significant problems in nausea and procedural anxiety subscales; however, children who were hospitalized more had fewer issues in the communication subscale. Also, children whose mother had chronic disease had poorer HRQoL regarding pain and hurt cognitive problems and treatment anxiety. Given the importance of assessment and monitoring HRQoL in children with ALL, health professionals should be aware of how parents' chronic disease affects HRQoL. Psychosocial support should be provided to children and their parents, especially for those whose parents have a chronic illness.


Assuntos
Nível de Saúde , Leucemia/psicologia , Pais/psicologia , Qualidade de Vida , Autorrelato , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Seguimentos , Humanos , Leucemia/reabilitação , Masculino , Pessoa de Meia-Idade , Prognóstico , Inquéritos e Questionários , Adulto Jovem
2.
PLoS One ; 15(10): e0239967, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33002084

RESUMO

Our objective was to further the understanding of the process of reintegration of childhood cancer patients after treatment and to identify factors influencing that process. Using a qualitative approach, we conducted 49 interviews with parents (n = 29 mothers, n = 20 fathers) from 31 families with a child (<18 years) with leukemia or CNS tumor. Interviews were conducted about 16 to 24 months after the end of the treatment. We used a semi-structured interview guideline and analyzed the data using content analysis. Average age of pediatric cancer patients was 5.5 years at the time of diagnosis; mean time since diagnosis was 3.5 years. Parents reported immediate impact of the disease on their children. Reintegration had gone along with delayed nursery/school enrollment or social challenges. In most cases reintegration was organized with a gradual increase of attendance. Due to exhaustion by obligatory activities, reintegration in leisure time activities was demanding and parents reported a gradual increase of activity level for their children. Parents described several barriers and facilitators influencing the reintegration process into nursery/school and leisure time activities (structural support, social support, health status, intrapersonal aspects). Although many children reintegrate well, the process takes lots of effort from parents and children. Childhood cancer survivors and their families should be supported after the end of intensive treatment to facilitate reintegration.


Assuntos
Neoplasias Encefálicas/psicologia , Sobreviventes de Câncer/educação , Leucemia/psicologia , Pais/psicologia , Ajustamento Social , Adulto , Idoso , Atitude , Neoplasias Encefálicas/reabilitação , Sobreviventes de Câncer/psicologia , Criança , Feminino , Humanos , Leucemia/reabilitação , Masculino , Pessoa de Meia-Idade , Instituições Acadêmicas/estatística & dados numéricos , Inquéritos e Questionários
3.
Pediatr Blood Cancer ; 67(12): e28681, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32940000

RESUMO

Because of increasing survival rates in pediatric oncology, attention is focusing on cancer and its treatment-related side effects. Rehabilitation may reduce their impact. However, the literature does not provide strong evidence regarding rehabilitation pathways. Therefore, the Italian Association of Pediatric Hematology and Oncology organized a consensus conference on the role of rehabilitation of motor impairments in children/adolescents affected by leukemia, central nervous system, and bone tumors to define recommendations for daily practice. The grading of recommendation assessment, developing and evaluation (GRADE) method was used in order to formulate questions, select outcomes, evaluate evidence, and create recommendations. This paper includes the results on the rehabilitation assessment.


Assuntos
Neoplasias Ósseas/reabilitação , Neoplasias do Sistema Nervoso Central/reabilitação , Leucemia/reabilitação , Guias de Prática Clínica como Assunto/normas , Consenso , Humanos , Itália , Prognóstico
4.
Eur J Cancer Care (Engl) ; 28(1): e12935, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30345723

RESUMO

OBJECTIVES: The aim of this study was to identify future research agendas that reflect the concerns and unexplored areas of interest for patients with life-threatening cancer, their relatives and the clinical specialists during the cancer trajectory. METHODS: Six focus group discussions were conducted addressing two different cancer trajectories: primary malignant brain tumour and acute leukaemia. For each of the two cancer trajectories, separate FGIs were carried out with patients, relatives and clinical specialists to identify important concerns, challenges and uncertainties. The FGIs were video/audio-recorded, transcribed and thematically analysed within and across FGI groups to construct research topics. Finally, the literature was reviewed for existing evidence concerning the identified research topic(s) to strengthen the suggested research agendas. RESULTS: New research agendas related to high-grade glioma brain tumour and acute leukaemia with corresponding research questions were formulated within the topics of supportive care/palliation, education/information, rehabilitation, complementary and alternative therapy and organization of health care. CONCLUSION: User involvement in identifying research agendas has the potential to improve quality of care for patients and caregivers across the cancer trajectory, while minimizing the gap in research between the healthcare user and healthcare provider.


Assuntos
Neoplasias Encefálicas/terapia , Terapias Complementares , Atenção à Saúde , Glioma/terapia , Leucemia/terapia , Cuidados Paliativos , Educação de Pacientes como Assunto , Pesquisa , Adulto , Idoso , Neoplasias Encefálicas/reabilitação , Cuidadores , Feminino , Grupos Focais , Glioma/reabilitação , Pessoal de Saúde , Humanos , Leucemia/reabilitação , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de Vida
5.
Support Care Cancer ; 26(12): 4161-4168, 2018 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-29948395

RESUMO

BACKGROUND: A child's cancer not only affects the child in question, but also their family members and even closes relatives and friends. The nature of this disease is such that, while imposing a high level of care workload on the family, it also affects various family aspects including personal, familial, and social interactions and relationships, as well as family functioning. This study aims to describe family interactions in childhood leukemia. METHODS: This study was an exploratory descriptive study, conducted on 58 participants (40 family members and 18 members of the health team), with purposeful sampling and semi-structured interviews-63 personal interviews and four group interviews-in the research context of the Cancer Hospital in Isfahan, 2016-2017. Data analysis in this study was carried out with qualitative content analysis using the Graneheim method. RESULTS: In the data analysis, four main categories and 13 subcategories were revealed. The first category, changes in roles, included the subcategories of super caregiver mother, supportive super father, role shift, self and others' forgetfulness, and confusion in roles and tasks; the second category, changes in interpersonal relationships, included the subcategories of changes in spousal relationships, changes in parent-child relationships, and changes in relationships between children; the third category, changes in social interactions, included the subcategories of changes in relationships with relatives, changes in relationships with peers, changes in relationships with the therapy team, and changes in interaction with supportive social networks; and the fourth category, changes in relationship with God, included the subcategories of spiritual bond and spiritual illness. CONCLUSION: Regarding the findings of this study, it is expected that health system policymakers in the country, while striving to strengthen the positive aspect of changes in family relationships and interactions, will develop and execute operational, comprehensive, and society-based plans in order to eliminate the barriers and problems of relationships within the family, as well as in relation to the larger community, taking into consideration the family's cultural and social beliefs.


Assuntos
Família/psicologia , Relações Interpessoais , Leucemia/reabilitação , Apoio Social , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Leucemia/psicologia , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
6.
J Natl Cancer Inst ; 110(8): 905-913, 2018 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-29514304

RESUMO

Background: This study aimed to assess functional and structural brain connectivity in adult childhood leukemia survivors and the link with cognitive functioning and previously identified risk factors such as intrathecal methotrexate dose and age at start of therapy. Methods: Thirty-one nonirradiated adult childhood leukemia survivors and 35 controls underwent cognitive testing and multimodal magnetic resonance imaging (resting state functional MRI, T1-weighted, diffusion-weighted, and myelin water imaging [MWI]). Analyses included dual regression, voxel-based morphometry, advanced diffusion, and MWI modeling techniques besides stepwise discriminant function analysis to identify the most affected executive cognitive domain. Correlations with discrete intrathecal MTX doses and (semi)continuous variables were calculated using Spearman's rank and Pearson's correlation, respectively. All correlation tests were two-sided. Positive and negative T-contrasts in functional and structural MRI analysis were one-sided. Results: Survivors demonstrated lower functional connectivity between the default mode network (DMN) and inferior temporal gyrus (ITG; P < .008). Additionally, we observed higher fractional anisotropy (FA; P = .04) and lower orientation dispersion index (ODI; P = .008) at the left centrum semiovale, which could-given that several fiber bundles cross this region-suggest selective reduced integrity of the respective white matter tracts. Set shifting reaction time, a measure of cognitive flexibility, was mostly impaired and correlated with lower FA (r = -0.53, P = .003) and higher ODI (r = 0.40, P = .04) in survivors but not with DMN-ITG connectivity. There were no statistically significant differences between survivors and controls in WM or GM volume, nor was there a statistically significant correlation between imaging measurements and age at start of therapy or intrathecal methotrexate dose. Conclusions: Adult, nonirradiated childhood leukemia survivors show altered brain connectivity, which is linked with cognitive flexibility.


Assuntos
Encéfalo/diagnóstico por imagem , Encéfalo/fisiologia , Sobreviventes de Câncer/psicologia , Cognição/fisiologia , Leucemia/reabilitação , Plasticidade Neuronal/fisiologia , Adolescente , Adulto , Idade de Início , Encéfalo/efeitos dos fármacos , Sobreviventes de Câncer/estatística & dados numéricos , Estudos de Casos e Controles , Criança , Cognição/efeitos dos fármacos , Feminino , Humanos , Injeções Espinhais , Leucemia/tratamento farmacológico , Leucemia/epidemiologia , Leucemia/psicologia , Imageamento por Ressonância Magnética , Masculino , Metotrexato/administração & dosagem , Metotrexato/efeitos adversos , Rede Nervosa/diagnóstico por imagem , Plasticidade Neuronal/efeitos dos fármacos , Substância Branca/diagnóstico por imagem , Substância Branca/efeitos dos fármacos , Substância Branca/fisiologia , Adulto Jovem
7.
BMJ Open ; 7(8): e014505, 2017 08 11.
Artigo em Inglês | MEDLINE | ID: mdl-28801389

RESUMO

INTRODUCTION: For ill children as well as for their parents and siblings, childhood cancer poses a major challenge. Little is known about the reintegration into daily life of childhood cancer survivors and their families. The aim of this prospective observational study is to further the understanding of the role of rehabilitation measures in the reintegration process of childhood leukaemia or brain tumour survivors and their family members after the end of cancer treatment. METHODS AND ANALYSIS: This prospective observational study consists of three study arms: a quantitative study in cooperation with three German paediatric oncological study registries (study arm 1), a quantitative study in cooperation with a rehabilitation clinic that offers a family-oriented paediatric oncological rehabilitation programme (study arm 2) and a qualitative study at 12-month follow-up including families from the study arms 1 and 2 (study arm 3). In study arm 1, children, parents and siblings are surveyed after treatment (baseline), 4-6 months after baseline measurement and at 12-month follow-up. In study arm 2, data are collected at the beginning and at the end of the rehabilitation measure and at 12-month follow-up. Families are assessed with standardised questionnaires on quality of life, emotional and behavioural symptoms, depression, anxiety, fear of progression, coping and family functioning. Furthermore, self-developed items on rehabilitation aims and reintegration into daily life are used. Where applicable, users and non-users of rehabilitation measures will be compared regarding the outcome parameters. Longitudinal data will be analysed by means of multivariate analysis strategies. Reference values will be used for comparisons if applicable. Qualitative data will be analysed using thematic analysis. ETHICS AND DISSEMINATION: This study has been approved by the medical ethics committee of the Medical Chamber of Hamburg. Data will be published in peer-reviewed journals and presented at conferences.


Assuntos
Neoplasias Encefálicas/reabilitação , Sobreviventes de Câncer , Leucemia/reabilitação , Pais/psicologia , Adaptação Psicológica , Adolescente , Ansiedade , Neoplasias Encefálicas/psicologia , Sobreviventes de Câncer/psicologia , Criança , Pré-Escolar , Protocolos Clínicos , Feminino , Alemanha , Humanos , Leucemia/psicologia , Masculino , Avaliação de Programas e Projetos de Saúde , Estudos Prospectivos , Qualidade de Vida , Serviços de Saúde Escolar , Irmãos/psicologia , Ajustamento Social
8.
J Cancer Surviv ; 10(6): 1058-1066, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27185246

RESUMO

PURPOSE: Our principal aim was to assess the occupational outcomes of French survivors of childhood leukemia, compared to national population. The secondary objective was to identify determinants linked with employment stability after childhood leukemia. METHODS: All survivors aged 15 and over enrolled in the French LEA Cohort (Childhood and Adolescent Leukemia) were included. Occupational data were self-reported. The occupational distributions expected in the cohort for each age range were established based on the distribution in France as reference, and comparisons between observed and expected distributions were performed. Logistic regression model was used to explore determinants of stability of survivors' employment. RESULTS: The questionnaire was completed by 845 eligible survivors (response rate 87.8 %), with a mean age of 22.3 ± 5.4 years and a mean follow-up duration of 14.3 ± 6.3 years. Among the 361 survivors currently in the labor market, 36 (10.0 %) were seeking a job, which is significantly lower than expected (19.3 %) compared to French population. Conversely, among those currently employed, the number of survivors in unstable employment (43.9 %) was significantly higher than expected (33.5 %). Younger age and higher number of late effects were risk factors for unstable employment. CONCLUSIONS: While the employment rate of the young French adult population of childhood leukemia survivors seems rather positive, access to a steady job appears to be compromised for some survivors. IMPLICATIONS FOR CANCER SURVIVORS: A strategy to better identify particular subgroups of survivors at greatest risk for difficulties in their professional achievement will help ensure the development of specific intervention strategies and support procedures.


Assuntos
Emprego/tendências , Leucemia/reabilitação , Adolescente , Adulto , Feminino , Seguimentos , Humanos , Leucemia/mortalidade , Masculino , Fatores de Risco , Sobreviventes , Adulto Jovem
9.
BMJ Open ; 6(5): e010615, 2016 05 24.
Artigo em Inglês | MEDLINE | ID: mdl-27221126

RESUMO

INTRODUCTION: Patient involvement in healthcare has expanded from the clinical practice setting to include collaboration during the research process. There has been a growing international interest in patient and public involvement in setting research priorities to reduce the risk of discrepancy between what patients with cancer and their relatives experience as important unanswered questions and those which are actually researched. This study aims to challenge the conventional research process by inviting patients with life-threatening cancer (primary malignant brain tumours or acute leukaemia), relatives and patient organisations to join forces with clinical specialists and researchers to identify, discuss and prioritise supportive care and rehabilitation issues in future research. METHODS AND ANALYSIS: This is an exploratory qualitative study comprising two sets of three focus group interviews (FGIs): one set for primary malignant brain tumours and the other for acute leukaemia. Separate FGIs will be carried out with patients and relatives including representation from patient organisations and clinical specialists to identify important unanswered questions and research topics within each group. The FGIs will be video/audio recorded, transcribed and thematically analysed. This study will contribute to a patient-centred research agenda that captures issues that patients, their relatives, clinical specialists and researchers consider important. ETHICS AND DISSEMINATION: The study is registered at the Danish Data Protection Agency (number: 2012-58-0004) and the Scientific Ethics Review Committee of the Capital Region of Denmark (number: H-15001485). Papers will be published describing the methods applied and the supportive care and rehabilitation issues that are identified as important for future research. TRIAL REGISTRATION NUMBER: ISRCTN57131943; Pre-results.


Assuntos
Pesquisa Biomédica , Neoplasias Encefálicas/terapia , Leucemia/terapia , Participação do Paciente , Neoplasias Encefálicas/reabilitação , Dinamarca , Grupos Focais , Humanos , Leucemia/reabilitação , Pesquisa Qualitativa , Projetos de Pesquisa
10.
Intern Med ; 55(4): 347-52, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-26875958

RESUMO

OBJECTIVE: Adherence to rehabilitation exercise is much lower in patients with hematologic malignancies (22.5-45.8%) than in patients with solid tumors (60-85%) due to the administration of more intensive chemotherapeutic regimens in the former. Virtual reality exercise can be performed even in a biological clean room and it may improve the adherence rates in elderly patients with hematologic malignancies. Thus, in this pilot study, we aimed to investigate the feasibility and safety of virtual reality exercise intervention using Nintendo Wii Fit in patients with hematologic malignancies receiving chemotherapy. METHODS: In this feasibility study, 16 hospitalized patients with hematologic malignancies aged ≥60 years performed virtual reality exercise for 20 minutes using the Nintendo Wii Fit once a day, five times a week, from the start of chemotherapy until hospital discharge. The adherence rate, safety, and physical and psychological performances were assessed. RESULTS: The adherence rate for all 16 patients was 66.5%. Nine patients completed the virtual reality exercise intervention with 88 sessions, and the adherence rate was 62.0%. No intervention-related adverse effects >Grade 2, according to National Cancer Institute Common Terminology Criteria for Adverse Events version 3.0, were observed. We noted maintenance of the physical performance (e.g., Barthel index, handgrip strength, knee extension strength, one-leg standing time, and the scores of timed up and go test and Instrumental Activities of Daily Living) and psychosocial performance (e.g., score of hospital anxiety and depression scale). CONCLUSION: Virtual reality exercise using the Wii Fit may be feasible, safe and efficacious, as demonstrated in our preliminary results, for patients with hematologic malignancies receiving chemotherapy.


Assuntos
Doença de Hodgkin/reabilitação , Leucemia/reabilitação , Linfoma não Hodgkin/reabilitação , Terapia de Exposição à Realidade Virtual , Atividades Cotidianas , Idoso , Terapia por Exercício/métodos , Estudos de Viabilidade , Feminino , Doença de Hodgkin/psicologia , Humanos , Leucemia/psicologia , Linfoma não Hodgkin/psicologia , Masculino , Pessoa de Meia-Idade , Seleção de Pacientes , Modalidades de Fisioterapia , Estudos Prospectivos , Resultado do Tratamento , Jogos de Vídeo , Terapia de Exposição à Realidade Virtual/métodos
11.
Diabet Med ; 33(10): 1347-51, 2016 10.
Artigo em Inglês | MEDLINE | ID: mdl-26757409

RESUMO

AIMS: Childhood cancer survivors treated with haematopoietic stem cell transplantation (HSCT) and total body irradiation are at an increased risk of developing diabetes early in life due to insulin resistance and ß-cell dysfunction, but the optimal screening method is unknown. The National Institute for Health and Care Excellence guidelines for community diabetes screening recommend using fasting glucose ≥ 7 mmol/l and/or HbA1c ≥ 48 mmol/mol (6.5%) for diagnosis and, fasting glucose 5.5-6.9 mmol/l or HbA1c 42-47 mmol/mol (6-6.5%) to indicate high risk. This study aimed to evaluate the sensitivities of fasting glucose and HbA1c in the diagnosis of diabetes and impaired glucose tolerance in childhood HSCT survivors. METHOD: The patients were 35 (male = 19) HSCT survivors from a single UK centre under follow-up from 2006 to 2013. Patients had a median age (range) of 19.2 (13.1-26.2) years and had been treated for acute lymphoblastic (n = 31) or myeloid (n = 4) leukaemia when aged 7.8 (2.4-16.7) years. The outcome measures were oral glucose tolerance test (OGTT), fasting glucose and HbA1c . RESULTS: OGTT identified 6 patients with diabetes (120-min glucose ≥ 11.1 mmol/l), 12 with impaired glucose tolerance (120-min glucose 7.8-11.0 mmol/l) and 2 with impaired fasting glucose (≥ 7 mmol/l). Fasting glucose ≥ 7 mmol/l or HbA1c ≥ 48 mmol/mol identified two of the six patients with diabetes diagnosed on OGTT. Fasting glucose ≥ 5.5 mmol/l and HbA1c ≥ 42 mmol/mol identified three and two patients, respectively, with diabetes. Only 1 of 12 patients with impaired glucose tolerance had a fasting glucose ≥ 5.5 mmol/l and none had HbA1c ≥ 42 mmol/mol (≥ 6%). CONCLUSIONS: The fasting glucose and HbA1c cut-offs used in UK population screening only identified one-third of HSCT survivors with diabetes and do not identify those at risk. Diabetes screening in HSCT survivors requires standard OGTTs.


Assuntos
Sobreviventes de Câncer , Diabetes Mellitus/diagnóstico , Transplante de Células-Tronco Hematopoéticas , Leucemia/terapia , Programas de Rastreamento/métodos , Irradiação Corporal Total , Criança , Pré-Escolar , Diabetes Mellitus/sangue , Feminino , Seguimentos , Teste de Tolerância a Glucose , Hemoglobinas Glicadas/análise , Transplante de Células-Tronco Hematopoéticas/efeitos adversos , Humanos , Lactente , Leucemia/reabilitação , Masculino , Fatores de Risco , Irradiação Corporal Total/efeitos adversos
12.
Rev. esp. salud pública ; 89(2): 203-215, mar.-abr. 2015. tab
Artigo em Espanhol | IBECS | ID: ibc-135551

RESUMO

Fundamentos: Los factores relacionados con la recepción de cuidado informal (CI) en pacientes oncológicos es una cuestión poco estudiada. El objetivo fue analizar los factores sociodemográficos y clínicos asociados a la recepción de cuidado informal en pacientes con neoplasia hematológica a lo largo de las diferentes etapas del tratamiento. Métodos: 139 pacientes diagnosticados de neoplasia hematológica que recibieron un trasplante de células madre durante el período 2006-2011 en dos centros sanitarios españoles completaron la encuesta elaborada para el estudio. Se estimó un modelo de regresión logística binaria para cada una de las cuatro etapas de tratamiento: pretrasplante, primer año, segundo y tercer año, cuarto al sexto año postrasplante. La variable dependiente fue recibir o no cuidado informal. Resultados: Pacientes diagnosticados de leucemia aguda presentaron mayor probabilidad de recibir CI durante la etapa pretrasplante (OR=6,394) y durante el segundo y tercer año postrasplante (OR=42,212). A largo plazo (4º-6º año) los pacientes con mieloma múltiple fueron los que requirieron mayor cuidado (OR=15,977). El estado de salud fue estadísticamente significativo en la mayoría de las etapas. Ser hombre (OR=0,263), tener pareja (OR=0,137) y estar empleado (OR=0,110) se asociaron a una menor probabilidad de recibir CI a largo plazo. Conclusiones: El CI está presente en más del 75% de los pacientes con neoplasia hematológica durante la etapa pretrasplante y primer año postrasplante. El diagnóstico y estado de salud son decisivos en la probabilidad de recibirlo, pero no el tipo de trasplante. Los factores sociodemográficos cobran protagonismo a largo plazo (AU)


Background: There is little information on factors related to use of to informal care in cancer patients. Our objective is to study sociodemographic and clinical factors associated with use of informal care in patients with hematologic malignancy and analyze how these changes throughout different phases of the treatment. Methods: 139 patients diagnosed with hematologic malignancy who received an haematopoietic stem cell transplantation between 2006-2011 in two Spanish hospitals completed the developed postal questionnaire. A binary logistic regression model was used to analyse the factors associated with use of informal care each of four phases of the treatment (pretransplant, first year, second and third year, and from the fouth to sixth year postransplant). Dependent variable was receive vs. not receive informal care. Results: Patients diagnosed with acute leukemia had higher probability of receiving informal care during pretransplant period (OR=6.394) and during the second and third year postransplantation (OR=42.212). In the long-term (4-6 years), multiple myeloma patients were the ones who required more informal care (OR=15.977). Health status was statistically significant during all phases. Being male (OR=0.263), having partner (OR=0.137) and being employed (OR=0.110) were associated with lower likelihood of receiving informal care in the long-term. Conclusions: Over 75% of patients diagnosed with hematologic malignancy received informal care during pretrasplant and first year postransplant. Type of diagnosis and health status are decisive factors in the probability of receiving informal care at all phases, while the type of transplantation is not. Sociodemografic factors are relevant in the long-term (AU)


Assuntos
Humanos , Masculino , Feminino , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Transplante de Células-Tronco , Neoplasias Hematológicas/cirurgia , Continuidade da Assistência ao Paciente/organização & administração , Seguimentos , Assistência Domiciliar/estatística & dados numéricos , Mieloma Múltiplo/reabilitação , Leucemia/reabilitação , Cuidadores/estatística & dados numéricos , Apoio Social , Nível de Saúde , Inquéritos Epidemiológicos/estatística & dados numéricos , Fatores de Risco
13.
Med Phys ; 40(11): 111713, 2013 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24320421

RESUMO

PURPOSE: To evaluate the dosimetric consequences of inaccurate isocenter positioning during treatment of total marrow (lymph-node) irradiation (TMI-TMLI) using volumetric modulated arc therapy (VMAT). METHODS: Four patients treated with TMI and TMLI were randomly selected from the internal database. Plans were optimized with VMAT technique. Planning target volume (PTV) included all the body bones; for TMLI, lymph nodes and spleen were considered into the target, too. Dose prescription to PTV was 12 Gy in six fractions, two times per day for TMI, and 2 Gy in single fraction for TMLI. Ten arcs on five isocenters (two arcs for isocenter) were used to cover the upper part of PTV (i.e., from cranium to middle femurs). For each plan, three series of random shifts with values between -3 and +3 mm and three between -5 and +5 mm were applied to the five isocenters simulating involuntary patient motion during treatment. The shifts were applied separately in the three directions: left-right (L-R), anterior-posterior (A-P), and cranial-caudal (C-C). The worst case scenario with simultaneous random shifts in all directions simultaneously was considered too. Doses were recalculated for the 96 shifted plans (24 for each patient). RESULTS: For all shifts, differences <0.5% were found for mean doses to PTV, body, and organs at risk with volumes >100 cm(3). Maximum doses increased up to 15% for C-C shifted plans. PTV covered by the 95% isodose decreased of 2%-8% revealing target underdosage with the highest values in C-C direction. CONCLUSIONS: The correct isocenter repositioning of TMI-TMLI patients is fundamental, in particular in C-C direction, in order to avoid over- and underdosages especially in the overlap regions. For this reason, a dedicated immobilization system was developed in the authors' center to best immobilize the patient.


Assuntos
Medula Óssea/efeitos da radiação , Radioterapia de Intensidade Modulada/métodos , Desenho de Equipamento , Fêmur/efeitos da radiação , Transplante de Células-Tronco Hematopoéticas , Humanos , Leucemia/reabilitação , Linfonodos/efeitos da radiação , Linfoma/terapia , Mieloma Múltiplo/terapia , Órgãos em Risco , Posicionamento do Paciente , Doses de Radiação , Radiometria , Reprodutibilidade dos Testes , Crânio/efeitos da radiação , Baço/efeitos da radiação , Tomografia Computadorizada por Raios X
14.
Am J Phys Med Rehabil ; 92(3): 215-22, 2013 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23117267

RESUMO

OBJECTIVE: The aim of this study was to assess the frequency and reasons for return to the primary acute care service among patients with leukemia undergoing inpatient rehabilitation. DESIGN: This is a retrospective study of all patients with leukemia, myelodysplastic syndrome, aplastic anemia, or myelofibrosis admitted to inpatient rehabilitation at a tertiary referral-based cancer center between January 1, 2005, and April 10, 2012. Items analyzed from patient records included return to the primary acute care service with demographic information, leukemia characteristics, medications, hospital admission characteristics, and laboratory values. RESULTS: Two hundred twenty-five patients were admitted a total of 255 times. Ninety-three (37%) of the 255 leukemia inpatient rehabilitation admissions returned to the primary acute care service. Eighteen (19%) and 42 (45%) of the 93 patients died in the hospital and were discharged home, respectively. Statistically significant factors (P < 0.05) associated with return to the primary acute care service include peripheral blast percentage and the presence of an antifungal agent on the day of the inpatient rehabilitation transfer. Using additional two factors (platelet count and the presence of an antiviral agent, both P < 0.11), the Return to Primary-Leukemia Index was formulated. CONCLUSIONS: Patients with leukemia with the presence of circulating peripheral blasts and/or an antifungal agent may be at increased risk for return to the primary acute care service. The Return to Primary-Leukemia Index should be tested in prospective studies to determine its usefulness.


Assuntos
Hospitalização , Leucemia/reabilitação , Transferência de Pacientes , Adulto , Idoso , Idoso de 80 Anos ou mais , Antifúngicos/uso terapêutico , Antivirais/uso terapêutico , Crise Blástica/sangue , Institutos de Câncer , Feminino , Mortalidade Hospitalar , Humanos , Leucemia/mortalidade , Contagem de Leucócitos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Modelos Estatísticos , Contagem de Plaquetas , Estudos Retrospectivos , Adulto Jovem
15.
Klin Padiatr ; 223(3): 159-64, 2011 May.
Artigo em Inglês | MEDLINE | ID: mdl-21472636

RESUMO

BACKGROUND: The objective of this paper is to provide information about the quality (e.g. completeness, response) of long-term surveillance in German paediatric oncology and haematology based on the structures implemented by the German Childhood Cancer Registry (GCCR). METHODS: The GCCR contacts parents or patients to collect and update information on a minimal set of follow-up health status data (e.g. late relapses, subsequent neoplasms, current address) and exchanges this information regularly with the appropriate clinical trials. RESULTS: Between 2006 and 2010, GCCR approached a total of about 20,000 patients (contact at the age of 16 years, inquiry concerning the health status) in the context of long-term surveillance. 11,000 addresses of former patients had to be researched via municipal registrar's offices. The response rates ranged from 56% to 68%, the research in municipal offices provided 93-96% valid addresses. Of 46,115 patients diagnosed between 1980 and 2009, 25,283 are in long-term surveillance in 2010. DISCUSSION: Long-term surveillance requires considerable logistic effort at GCCR and requires that thousands of letters be mailed each year in order to ensure regularly updated information. Long-term surveillance is indispensable for a better understanding of late effects, subsequent neoplasms and quality of life of former childhood cancer patients.


Assuntos
Neoplasias/reabilitação , Vigilância da População/métodos , Sistema de Registros , Sobreviventes/estatística & dados numéricos , Adolescente , Adulto , Causas de Morte , Neoplasias do Sistema Nervoso Central/mortalidade , Neoplasias do Sistema Nervoso Central/psicologia , Neoplasias do Sistema Nervoso Central/reabilitação , Criança , Pré-Escolar , Ensaios Clínicos como Assunto/estatística & dados numéricos , Estudos de Coortes , Estudos Transversais , Bases de Dados Factuais/estatística & dados numéricos , Feminino , Alemanha , Nível de Saúde , Humanos , Leucemia/mortalidade , Leucemia/psicologia , Leucemia/reabilitação , Assistência de Longa Duração , Linfoma/mortalidade , Linfoma/psicologia , Linfoma/reabilitação , Masculino , Pessoa de Meia-Idade , Neoplasias/mortalidade , Neoplasias/psicologia , Qualidade de Vida/psicologia , Análise de Sobrevida , Sobreviventes/psicologia , Adulto Jovem
16.
Klin Padiatr ; 223(3): 147-51, 2011 May.
Artigo em Inglês | MEDLINE | ID: mdl-21462101

RESUMO

The peripheral blood stem cell transplantation (PBSCT) represents a specific, but stressful therapy for hemato-oncological diseases. While for adults, data suggest positive eff ects for a supportive sport therapy, this question is not evaluated sufficiently for children. The objective of this study was to examine the integration of sports activity into pediatric PBSCT and to indicate attainable results. This 2-step case-control-study included 23 children and adolescents from the PBSCT: During the isolation phase 13 patients trained 3 times per week on a cycle ergometer and passed a course with different sports equipment. Apart from recording physiologic adaptations, quality of live was inquired in a pre-post design using questionnaires. Guided interviews according to necessity and requirements for sports activity at the PBSCT unit completed the evaluation and were used for the intervention as well as for the control group (n = 10) without sports therapy. On the ergometer, patients trained average 25 min with 0.6 watt / kg. In the majority, a loss of muscular power could be avoided. Quality of life and fatigue symptoms improved by trend. Interview analysis showed general acceptance of physical activity during PBSCT. After initial skepticism due to the additional burden, our implementation study showed the feasibility of supportive sports therapy in PBSCT. Quality and flexibility of the equipment should be higher than normal and different physical and psychological conditions of the patients should be anticipated and integrated into the training program.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Leucemia/reabilitação , Atividade Motora , Neoplasias/reabilitação , Esportes , Adolescente , Estudos de Casos e Controles , Criança , Terapia Combinada , Teste de Esforço , Estudos de Viabilidade , Feminino , Alemanha , Força da Mão , Transplante de Células-Tronco Hematopoéticas/psicologia , Humanos , Leucemia/psicologia , Masculino , Força Muscular , Neoplasias/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Isolamento de Pacientes , Resistência Física , Qualidade de Vida/psicologia , Treinamento Resistido , Esportes/psicologia , Inquéritos e Questionários
17.
Brain Inj ; 25(1): 101-12, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21142826

RESUMO

PRIMARY OBJECTIVES: Children with a history of cancer are at increased risk for cognitive impairments, particularly in executive and memory domains. Traditional, in-person cognitive rehabilitation strategies may be unavailable and/or impractical for many of these children given difficulties related to resources and health status. The feasibility and efficacy of implementing a computerized, home-based cognitive rehabilitation curriculum designed to improve executive function skills was examined in these children. METHODS: A one-arm open trial pilot study of an original executive function cognitive rehabilitation curriculum was conducted with 23 paediatric cancer survivors aged 7-19. RESULTS: Compliance with the cognitive rehabilitation program was 83%, similar to that of many traditional programs. Following the cognitive intervention, participants showed significantly increased processing speed, cognitive flexibility, verbal and visual declarative memory scores as well as significantly increased pre-frontal cortex activation compared to baseline. CONCLUSIONS: These results suggest that a program of computerized cognitive exercises can be successfully implemented at home in young children with cancer. These exercises may be effective for improving executive and memory skills in this group, with concurrent changes in neurobiologic status.


Assuntos
Lesões Encefálicas/reabilitação , Neoplasias Encefálicas/complicações , Transtornos Cognitivos/reabilitação , Terapia Cognitivo-Comportamental/métodos , Função Executiva , Leucemia/complicações , Adolescente , Lesões Encefálicas/etiologia , Lesões Encefálicas/fisiopatologia , Neoplasias Encefálicas/fisiopatologia , Neoplasias Encefálicas/reabilitação , Criança , Transtornos Cognitivos/etiologia , Transtornos Cognitivos/fisiopatologia , Função Executiva/fisiologia , Feminino , Serviços Hospitalares de Assistência Domiciliar , Humanos , Leucemia/fisiopatologia , Leucemia/reabilitação , Masculino , Testes Neuropsicológicos , Projetos Piloto , Análise e Desempenho de Tarefas , Adulto Jovem
18.
Rev. paul. pediatr ; 28(4): 352-358, out.-dez. 2010. graf, tab
Artigo em Português | LILACS | ID: lil-571758

RESUMO

OBJETIVO: Avaliar o efeito do treinamento muscular inspiratório em crianças com leucemia aguda. MÉTODOS: Trata-se de um estudo quase experimental com grupo controle. Quatorze pacientes com diagnóstico de leucemia aguda e idade entre cinco e 14 anos foram submetidos à avaliação da mobilidade torácica e da força muscular respiratória e divididos em dois grupos (A e B). Os pacientes do grupo A realizaram treinamento muscular inspiratório domiciliar por 15 minutos, duas vezes por dia, durante dez semanas, através do aparelho Threshold®, com carga de 30 por cento da pressão inspiratória máxima, reajustada após reavaliações semanais. O grupo B (controle) realizou uma avaliação das pressões respiratórias máximas inicialmente e após dez semanas. Os dados foram analisados com o SPSS 15.0. Aplicou-se o teste t para analisar as diferenças entre as pressões inspiratória máxima e expiratória máxima entre os dois grupos e o teste de correlação de Pearson para analisar associações das medidas de pressão inspiratória e pressão expiratória com as diferentes cargas utilizadas. RESULTADOS: Constatou-se ganho significativo de 35 por cento nas pressões inspiratória máxima e expiratória máxima no grupo A ao término do treinamento. Houve correlação positiva entre os níveis de carga utilizada e a pressão inspiratória máxima (p<0,0001) e a pressão expiratória máxima (p=0,0001). CONCLUSÕES: O treinamento muscular inspiratório pode ser eficaz no ganho de força muscular em crianças em tratamento de leucemia aguda.


OBJECTIVE: To evaluate the effect of inspiratory muscle training in children with acute leukemia. METHODS: This is a quasi-experimental study with a control group. Fourteen patients with 5-14 years old and a diagnosis of acute leukemia were evaluated regarding their thoracic mobility and respiratory muscle strength. They were divided in two groups (A and B). Group A received domiciliary inspiratory muscle training during 15 minutes, twice a day, for ten weeks, with a Threshold® device using a load of 30 percent of the maximal inspiratory pressure, readjusted after weekly evaluations. Group B patients were tested regarding their maximum respiratory pressures in their first evaluation and after ten weeks. Student t-test was used to evaluate maximum inspiratory and expiratory pressures between groups Pearson's correlation test examined the association of inspiratory and expiratory pressures with the different loads, using SPSS 15.0 software. RESULTS: A significant improvement of 35 percent was observed in the maximum inspiratory and expiratory pressures in group A at the end of the training. There was a strong positive correlation between the used load levels and maximal inspiratory (p<0.0001) and expiratory (p=0.0001) pressures. CONCLUSIONS: Inspiratory muscle training can be effective for improving inspiratory muscle strength in children beeing treated for acute leukemia.


Assuntos
Humanos , Criança , Exercícios Respiratórios , Leucemia/reabilitação , Músculos Respiratórios
20.
J Dev Behav Pediatr ; 28(6): 448-55, 2007 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-18091089

RESUMO

PURPOSE: To examine educational and occupational outcomes among survivors of childhood cancer and peers during the transition from adolescence to emerging adulthood. METHODS: Families were recruited when children with cancer were 8 to 15 years old and receiving initial treatment for a malignancy that did not primarily affect the central nervous system (CNS). At that time, each child with cancer was matched to a classmate of similar age, gender, and race for inclusion in a comparison group. For the current follow-up (7.29 years postdiagnosis), 56 survivors, 60 peers, and their parents completed questionnaires soon after the youth's 18th birthday. Severity of treatment and late effects were rated by healthcare providers. RESULTS: Survivors and peers were similar on a variety of outcomes, including family background, scholastic and occupational self-concept, and academic competence. However, survivors were more likely to report repeating a grade and having more school absences. The proportion of participants who graduated from high school, were working, and expressed plans to attend postsecondary education or seek employment were similar between groups. Initial treatment intensity, time since diagnosis, and severity of late effects were associated with several indices of educational and occupational attainment. CONCLUSIONS: Despite being more likely to repeat a grade and miss school, survivors of nonCNS cancer were similar to peers on most educational and occupational outcomes during the transition from adolescence to emerging adulthood. Interventions to assist academic or occupational functioning may not be necessary for all survivors, but additional research is needed to identify subgroups at risk for difficulties.


Assuntos
Escolha da Profissão , Escolaridade , Emprego , Leucemia/reabilitação , Linfoma/reabilitação , Neoplasias/reabilitação , Reabilitação Vocacional , Sobreviventes/psicologia , Absenteísmo , Adolescente , Adulto , Feminino , Humanos , Deficiências da Aprendizagem/psicologia , Deficiências da Aprendizagem/reabilitação , Leucemia/psicologia , Estudos Longitudinais , Linfoma/psicologia , Masculino , Neoplasias/psicologia , Grupo Associado , Determinação da Personalidade , Valores de Referência , Autoimagem , Fatores Sexuais , Escalas de Wechsler
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