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1.
Cancer ; 126(18): 4235-4245, 2020 09 15.
Artículo en Inglés | MEDLINE | ID: mdl-32648950

RESUMEN

BACKGROUND: Childhood cancer is a highly curable disease when timely diagnosis and appropriate therapy are provided. A negative impact of the coronavirus disease 2019 (COVID-19) pandemic on access to care for children with cancer is likely but has not been evaluated. METHODS: A 34-item survey focusing on barriers to pediatric oncology management during the COVID-19 pandemic was distributed to heads of pediatric oncology units within the Pediatric Oncology East and Mediterranean (POEM) collaborative group, from the Middle East, North Africa, and West Asia. Responses were collected on April 11 through 22, 2020. Corresponding rates of proven COVID-19 cases and deaths were retrieved from the World Health Organization database. RESULTS: In total, 34 centers from 19 countries participated. Almost all centers applied guidelines to optimize resource utilization and safety, including delaying off-treatment visits, rotating and reducing staff, and implementing social distancing, hand hygiene measures, and personal protective equipment use. Essential treatments, including chemotherapy, surgery, and radiation therapy, were delayed in 29% to 44% of centers, and 24% of centers restricted acceptance of new patients. Clinical care delivery was reported as negatively affected in 28% of centers. Greater than 70% of centers reported shortages in blood products, and 47% to 62% reported interruptions in surgery and radiation as well as medication shortages. However, bed availability was affected in <30% of centers, reflecting the low rates of COVID-19 hospitalizations in the corresponding countries at the time of the survey. CONCLUSIONS: Mechanisms to approach childhood cancer treatment delivery during crises need to be re-evaluated, because treatment interruptions and delays are expected to affect patient outcomes in this otherwise largely curable disease.


Asunto(s)
COVID-19 , Neoplasias/terapia , África del Norte/epidemiología , Asia Occidental/epidemiología , COVID-19/epidemiología , Niño , Estudios Transversales , Atención a la Salud , Personal de Salud/organización & administración , Personal de Salud/estadística & datos numéricos , Hospitales/estadística & datos numéricos , Humanos , Medio Oriente/epidemiología , Encuestas y Cuestionarios
2.
J Pediatr Hematol Oncol ; 42(1): 41-45, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31613845

RESUMEN

BACKGROUND: The correlation between gene expression of ABCC transporters and recurrence as a treatment failure in pediatric patients with acute lymphoblastic leukemia (ALL) is an unsolved problem in scientific associations. The aim of this study was to evaluate the predictive value of ABCC1-6 gene expression pattern for estimating recurrence in Iranian pediatric patients with ALL. MATERIALS AND METHODS: Iranian pediatric patients with approved ALL enrolled in this study as 2 groups of case (relapsed ALL) and control (treated individuals who lasted for >3 years following their final treatment). Real-time polymerase chain reaction was done with GAPDH for expressing ABCC1-6 transporter genes. Cumulative doses of Vincristine, Daunorubicin, and L-Asparginase were checked for each patient. Gathered data analyzed with SPSS version 22 and REST 2009 software. RESULTS: Thirty-nine samples as 23 relapsed ALL and 16 controls enrolled. High expression of ABCC2-6 and low expression of ABCC1 were detected in pediatric patients with relapse. ABCC3 and ABCC4 had significant relation with high-risk patients of NCI group. Also, ABCC4 and ABCC6 had more expression with high doses of Daunorubicin and L-Asparginase. CONCLUSIONS: Designed expression pattern have the predictive value for estimating of conferring relapse in Iranian pediatric patients with diagnosed ALL. The authors suggest of designing a multiple childhood malignancy center project to evaluate this pattern in a cohort study.


Asunto(s)
Asparaginasa/administración & dosificación , Daunorrubicina/administración & dosificación , Perfilación de la Expresión Génica , Regulación Leucémica de la Expresión Génica/efectos de los fármacos , Proteínas Asociadas a Resistencia a Múltiples Medicamentos/biosíntesis , Proteínas de Neoplasias/biosíntesis , Leucemia-Linfoma Linfoblástico de Células Precursoras/metabolismo , Adolescente , Niño , Preescolar , Femenino , Humanos , Lactante , Irán , Masculino , Proteína 2 Asociada a Resistencia a Múltiples Medicamentos , Proteínas Asociadas a Resistencia a Múltiples Medicamentos/genética , Proteínas de Neoplasias/genética , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamiento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/genética , Recurrencia
3.
Acta Oncol ; 58(7): 1003-1014, 2019 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-30915872

RESUMEN

Introduction: Considering the importance of empowering patients and their families by providing appropriate information and education, it seems smartphone apps provide a good opportunity for this group. The purpose of this review was to identify studies which used smartphone apps to help children and adolescents with cancer and their families. Method: Arksey and O'Malley's framework was employed in this review. To examine the evidence on the design and use of smartphone apps for the target group, PubMed, Embase, Scopus and Web of Science databases were searched from 2007 to November 2018. Results: Twenty-four articles met the inclusion criteria, with 33% being conducted in the USA and 21% in Canada. Moreover, in 20 studies (83%), app was specifically designed for children and adolescents, with only three studies (13%) for parents and one study (4%) for both. The main modules of smartphone apps in these studies included symptom assessment (90%), provision of information and education (74%), communication with caregivers (57%), social support (30%) and calendar and reminder (21%). Conclusions: Due to the easy access to smartphones without a costly infrastructure compared to landline phones, the use of mobile health (m-Health) has become a suitable method of providing healthcare services, especially for cancer. Use of smartphone apps, increases patient and families' access to reliable and suitable education and information regarding the disease. Thus, healthcare policy-makers in developing or underdeveloped countries can exploit the health-related potentials of m-Health following the experience of developed countries.


Asunto(s)
Acceso a la Información , Aplicaciones Móviles , Neoplasias/terapia , Educación del Paciente como Asunto , Teléfono Inteligente , Adolescente , Cuidadores/educación , Niño , Familia , Humanos , Oncología Médica/instrumentación , Oncología Médica/métodos , Telemedicina/instrumentación , Telemedicina/métodos
4.
Cell Mol Biol (Noisy-le-grand) ; 65(2): 7-13, 2019 Feb 28.
Artículo en Inglés | MEDLINE | ID: mdl-30860475

RESUMEN

Multidrug resistance based on ABC transporters' gene expression is one of the most important health challenges through chemotherapy of patients. This resistance can cause relapse or treatment failure. The goal of this conducted study was to evaluate the results of published reports which considered ABC transporters' gene expression in pediatric patients with acute leukemia. PubMed as a free search engine was chosen. The following Mesh terms were used as: "ATP-binding cassette transporters" OR "ABC-transporters*" AND "gene expression*" AND "leukemia" OR "ALL" OR "AML" OR "acute leukemia*". Age was set as an additional filter with the age range of birth to 18 years old. Initial screening was performed according to inclusion and exclusion criteria and the quality of the selected papers was assessed. Papers categorized into three sections as: pediatric patients with ALL (6 papers from 1998-2015); pediatric patients with AML (3 papers from 1992-2011) and pediatric patients with ALL and AML (7 papers from 1992-2014). Totally 1118 patients enrolled in the searched studies (ALL and AML: 488; ALL: 405; AML: 225). The common method for evaluating gene expression of ABC transporters was RT-PCR. More than 50% of the papers showed the influence of ABC transporters' gene expression on prognosis and treatment failures of patients. Despite controversial results, the gathered information in the current report serves as a comprehensive referential resource, which can be beneficial for future planning around this title, especially in developing countries.


Asunto(s)
Transportadoras de Casetes de Unión a ATP/genética , Regulación Leucémica de la Expresión Génica , Leucemia Mieloide Aguda/genética , PubMed , Transportadoras de Casetes de Unión a ATP/metabolismo , Niño , Humanos , Leucemia-Linfoma Linfoblástico de Células Precursoras/genética , Motor de Búsqueda
5.
Childs Nerv Syst ; 34(4): 639-647, 2018 04.
Artículo en Inglés | MEDLINE | ID: mdl-29214340

RESUMEN

PURPOSE: The clinical management of pediatric medulloblastoma requires a multidisciplinary approach, which can be challenging, especially in low- and middle-income countries. The aim of this study was to identify current challenges and describe the treatment and outcomes of Iranian pediatric patients with medulloblastoma who were referred to our center in Tehran, Iran. METHODS: Our retrospective review included 126 patient records from April 2007 to May 2015. The records were analyzed for epidemiologic features, treatment modalities, overall survival, and progression-free survival. Data were analyzed using SPSS 22.0 software. RESULTS: Median age at diagnosis was 6 years (male:female ratio, 2.3:1). At the time of diagnosis, 7 patients were 2 years or younger, and 76 (60.3%) were categorized as having high-risk disease. Overall, 100 patients had gross or near-total surgical resection. Cerebral spinal fluid involvement was detected in 22.2% of the patients tested, and spinal involvement was detected in 25% of the patients who underwent spinal MRI. Metastasis stages at the time of diagnosis were as follows: M0: 48.4% patients, M1: 16.7%, M2: 5.5%, and M3: 21.4%. Median times of follow-up and progression-free survival were 16 and 12 months, respectively. Probability of 7-year overall survival and progression-free survival were 59 and 53.8%, respectively. CONCLUSIONS: Results of the current retrospective study emphasize the need for implementing measures to improve outcome for our patients with medulloblastoma. Such measures include a multidisciplinary approach, unified national treatment guidelines, better disease and metastasis staging, twinning initiatives, and seeking a second opinion when needed.


Asunto(s)
Neoplasias Cerebelosas/epidemiología , Neoplasias Cerebelosas/terapia , Manejo de la Enfermedad , Hospitales Pediátricos , Meduloblastoma/epidemiología , Meduloblastoma/terapia , Neoplasias Cerebelosas/diagnóstico , Niño , Preescolar , Femenino , Humanos , Irán , Estudios Longitudinales , Imagen por Resonancia Magnética , Masculino , Meduloblastoma/diagnóstico , Estudios Retrospectivos , Resultado del Tratamiento
6.
Pediatr Hematol Oncol ; 35(1): 60-75, 2018 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-29565756

RESUMEN

BACKGROUND: The scarcity of information on pediatric ependymoma in Iran motivated this study. Our main objectives were to determine outcomes, identify clinical management challenges at a nongovernment hospital in Iran, and devise guidelines for improving care. PROCEDURE: A retrospective chart review was performed for pediatric patients with ependymoma who were younger than 15 years and treated at MPCTRC between 2007 and 2015. Records included patient demographics, treatment regimens used, duration of follow-up, and outcomes. Clinical outcomes [ie, 3-year overall survival (OS) and progression-free survival (PFS)] were determined based on the age at diagnosis (younger or older than 3 years) by using the Kaplan-Meier method. RESULTS: In total, 73 eligible patients were enrolled; 20 patients were in the younger group, and 53 were in the older group. The majority (91.8%, n = 67) of patients underwent initial gross-total or partial surgical resection, and 6 (8.2%) had a biopsy. Twenty-one patients experienced ependymoma recurrence. The median time to relapse was 1 year. The median duration of follow-up and PFS were 25 and 17 months, respectively. The 3-year OS and PFS were 61% and 59.5%, respectively. At the time of this project, 27 patients had died, and 35 were alive with no evidence of disease. CONCLUSION: Our study demonstrated inferior outcomes of Iranian children with ependymoma. To improve our care for these children, a paradigm shift must occur that includes radiation therapy as standard of care, second-look surgery, a multidisciplinary team approach, and potentially twinning initiatives.


Asunto(s)
Ependimoma , Recurrencia Local de Neoplasia , Adolescente , Niño , Preescolar , Supervivencia sin Enfermedad , Ependimoma/mortalidad , Ependimoma/patología , Ependimoma/cirugía , Femenino , Estudios de Seguimiento , Humanos , Lactante , Irán/epidemiología , Masculino , Recurrencia Local de Neoplasia/mortalidad , Recurrencia Local de Neoplasia/patología , Recurrencia Local de Neoplasia/terapia , Estudios Retrospectivos , Tasa de Supervivencia
7.
J Res Med Sci ; 23: 101, 2018.
Artículo en Inglés | MEDLINE | ID: mdl-30595709

RESUMEN

BACKGROUND: Cancer is the second most common cause of morbidity and mortality in children. This study aimed to epidemiologically and demographically assess common cancers in children in Iran. MATERIALS AND METHODS: This cohort study was conducted on children registered in Mahak Hospital and Rehabilitation Complex (which is a non-governmental organizations (NGO)-related hospital for only malignant diseases). A total of 2232 questionnaires were filled out for cancer patients between 2007 and 2016. The factors including age, gender, race, family history, type of treatment, and type of cancer were entered into Cox regression model to examine their effect on mortality of children diagnosed with cancer. RESULTS: The Cox regression model showed that age, race, type of cancer, family history of cancer, and type of treatment had a significant effect on mortality of children diagnosed with cancer (P < 0.05). The hazard ratio (HR) of mortality in 10-15 years old was higher than that of 1-5 years old (P = 0.03, HR = 1.3). The HR of mortality in patients with brain tumor (P < 0.01, HR = 2.24), sarcoma (P < 0.01, HR = 2.32), and neuroblastoma (P < 0.01, HR = 2.56) was twice the value in patients with leukemia. The HR of mortality in patients who had a family history of cancer was higher than that of patients without it (P < 0.01, HR = 1.33). Patients who had undergone chemotherapy along with surgery and radiotherapy (P = 0.02, HR = 0.68) and patients who received chemotherapy along with surgery (P = 0.01, HR = 0.67) had a lower HR of mortality compared to the chemotherapy group. CONCLUSION: Young age, multidisciplinary approach, and absence of family history were associated with lower hazard of death in children diagnosed with cancer; brain tumor, leukemia, and sarcoma had higher hazard of mortality compared to leukemia. Children with a family history of cancer should be under regular follow-up. Treatment should be multidisciplinary and comprehensive.

8.
Childs Nerv Syst ; 33(9): 1481-1490, 2017 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-28555309

RESUMEN

PURPOSE: Iran lacks a national registry reporting the data of central nervous system (CNS) tumors in children. Consequently, treatment success and failure rates are unknown, and a centralized system for disease-management recommendations does not exist. METHODS: To critically evaluate the current state of pediatric CNS tumor studies and reporting in Iran, we performed an extensive retrospective analysis of all known reports identified with multiple search engines. RESULTS: Of 409 initially retrieved articles, we evaluated 123 matching our inclusion criteria. We further narrowed these reports to 74 by excluding studies pertaining to adult patients only, non-CNS tumors, or brain metastases. We also excluded studies that were performed outside of Iran or that did not contain relevant data from our analysis. We divided the remaining studies into those describing exclusively pediatric patients (3484 patients) and those describing mixed populations of adults and children (18,641 patients). In total, our analysis included 22,125 patients. CONCLUSIONS: We identified many limitations in the reporting of studies describing the treatment or prevalence of CNS tumors in children in Iran. Our results may guide future efforts in Iran to improve the care for children with CNS tumors and may provide a valuable template for other comprehensive country- and disease-specific retrospective analyses.


Asunto(s)
Neoplasias del Sistema Nervioso Central/epidemiología , Adolescente , Niño , Preescolar , Humanos , Lactante , Recién Nacido , Irán/epidemiología , Prevalencia , Estudios Retrospectivos
9.
Med Mol Morphol ; 49(1): 53-6, 2016 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-26242204

RESUMEN

Immunophenotypic changes and lineage switch between diagnosis and relapse in acute lymphoblastic leukemia are uncommon and accompanied by poor outcomes. In this report, a 12-year-old boy with diagnosis of pre-B ALL with an aberrant expression of CD 7 is described. Patient was treated with the ALL-BFM 2000 protocol and suffered an episode of relapse with a lineage switch from pre-B ALL to T cell ALL. This report concludes that presence of aberrant expression of CD7 at diagnosis of pre-B ALL can have prognostic value of lineage switch to T cell ALL at relapse.


Asunto(s)
Antígenos CD7/metabolismo , Leucemia-Linfoma Linfoblástico de Células Precursoras B/metabolismo , Protocolos de Quimioterapia Combinada Antineoplásica/uso terapéutico , Niño , Humanos , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras B/diagnóstico , Leucemia-Linfoma Linfoblástico de Células Precursoras B/tratamiento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras B/patología , Recurrencia
10.
Pediatr Blood Cancer ; 62(12): 2235-7, 2015 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-26184891

RESUMEN

We report the epidemiology and characteristics of acute myeloid leukemia and outcomes of its treatment with the AML-BFM 83 protocol at the Mahak Pediatric Cancer Treatment and Research Center, Tehran, Iran, from 2007 to 2012. A positive family history of cancer or leukemia was associated with the risk of relapse (family history of cancer in relapse: n = 11; 61%, P = 0.136, leukemia: n = 7; 39%; P = 0.016). Treatment-related mortality was 19% and associated with underweight patients (n = 5; 62.5%; P = 0.158). Event-free and overall survivals were 36% (SE = 3.5) and 44% (SE = 3.4), respectively. These data suggest a possible relationship between family history and relapse rate.


Asunto(s)
Protocolos de Quimioterapia Combinada Antineoplásica/administración & dosificación , Leucemia Mieloide Aguda/tratamiento farmacológico , Leucemia Mieloide Aguda/mortalidad , Adolescente , Niño , Preescolar , Citarabina/administración & dosificación , Daunorrubicina/administración & dosificación , Supervivencia sin Enfermedad , Etopósido/administración & dosificación , Femenino , Humanos , Lactante , Masculino , Recurrencia , Tasa de Supervivencia
11.
J Pediatr Hematol Oncol ; 37(6): 429-32, 2015 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-25521083

RESUMEN

Cytomegalovirus (CMV) disease in pediatric acute lymphoblastic leukemia in the nontransplant setting is very rare. We report our experience with 4 such cases, and review the literature (n=12). The median age at diagnosis was 10 years and 50% of patients were males. Among the 11 cases with available information at the time of diagnosis, CMV disease occurred during maintenance therapy in 10 patients. Fever was present in 9 cases. CMV disease manifested as retinitis in 6, hepatosplenic disease in 3, pneumonitis in 1, and hemophagocytic lymphohistiocytosis in 1 patient. One patient had both CMV retinitis and CMV-related hemophagocytic lymphohistiocytosis. Four of the 7 patients with retinitis complained of visual disturbance at diagnosis. CMV viremia was present in 10 patients. Three patients had at least 1 relapse and developed permanent visual defects, and 1 patient developed recurrent retinal detachment. In conclusion, prolonged immunosuppression is the major etiology and retinitis is the most common manifestation of CMV disease. As a significant number of patients with retinitis are asymptomatic, early diagnosis and treatment is important to prevent permanent visual loss.


Asunto(s)
Infecciones por Citomegalovirus/etiología , Citomegalovirus/patogenicidad , Neumonía/etiología , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicaciones , Retinitis/etiología , Adolescente , Antivirales/uso terapéutico , Niño , Preescolar , Infecciones por Citomegalovirus/tratamiento farmacológico , Femenino , Humanos , Masculino , Neumonía/tratamiento farmacológico , Leucemia-Linfoma Linfoblástico de Células Precursoras/virología , Pronóstico , Retinitis/tratamiento farmacológico
12.
Childs Nerv Syst ; 30(3): 491-6, 2014 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-23943227

RESUMEN

PURPOSE: As central nervous system (CNS) tumors account for second most common childhood malignancies and the first cause of mortality in children with cancer, improving treatment modalities can lead to increase the health care of patients. In this study, we examined the prevalence of childhood brain tumors in patients who referred to MAHAK's Pediatric Cancer Treatment and Research Center (MPCTRC) for treatment. METHODS: A retrospective review of all children less than 15 years old with a CNS histologically proven tumor, who presented to MPCTRC from April 2007 to April 2010, was performed. Data was analyzed by SPSS version 19 with Kolmogorov-Smirnov and Chi-square tests. RESULTS: There were 198 (124 boys) children eligible for the study. The majority of the tumors were infratentorial (n = 134), and the rest were supratentorial (n = 60) and spinal (n = 4) cases. The median age was 6.11 ± 3.65 years old. Medulloblastoma (n = 66), low-grade glioma (n = 52), and high-grade glioma (n = 40) were the most common tumors. The mean duration of follow-up was 21 months. At the time of this analysis, there were 105 (53 %) children alive, 82 (41.4 %) deaths, and 11 (5.6 %) lost for follow-up. The survival rate was 51.68 ± 5.22 %. CONCLUSIONS: In contrast of high rate of death in this study, other general characteristics can serve as benchmark for improving our care for children with brain tumors in Iran.


Asunto(s)
Neoplasias del Sistema Nervioso Central/epidemiología , Adolescente , Distribución por Edad , Benchmarking , Neoplasias del Sistema Nervioso Central/mortalidad , Neoplasias del Sistema Nervioso Central/patología , Niño , Preescolar , Interpretación Estadística de Datos , Femenino , Estudios de Seguimiento , Humanos , Lactante , Irán/epidemiología , Masculino , Prevalencia , Sistema de Registros , Estudios Retrospectivos , Distribución por Sexo , Tasa de Supervivencia , Resultado del Tratamiento
14.
J Cancer Res Ther ; 19(Supplement): S272-S277, 2023 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-37148004

RESUMEN

Background: Osteosarcoma is one of the most common childhood bone malignancies. Although chemotherapy protocol including methotrexate is an effective treatment for osteosarcoma, some other regimens have excluded it because of its complications. Methods: This retrospective study was conducted on 93 children younger than 15 years old who were diagnosed with osteosarcomafrom March 2007 to January 2020. Two chemotherapy protocols were administrated for patients, namely, DCM protocol (Doxorubicin-Cisplatin-Methotrexate) and German protocol (excluding methotrexate). All statistical analysis was conducted using SPSS-25 software. Results: Among patients, 47.31% were male. Patients' age ranged from 3 to 15 with the mean of 10.41 ± 0.32 years. Femur was the most frequent primary tumor site (59.14%), followed by tibia (22.58%). Metastasis rate at diagnosis was 17.20% in our study. Furthermore, the 5-year overall survival (OS) of total patients was 37.3 ± 7.5%, whereas the 5-year OS of males and females was 33.6 ± 10.9% and 39.8 ± 10.6%, respectively. The 5-year OS of methotrexate regimen was 15.6 ± 9.6%, whereas that of methotrexate-free protocol was 50.2 ± 9.0%. Conclusions: Female patients had better survival rates than males. In addition, the chemotherapy protocol excluding methotrexate significantly increased the overall and event free survival of patients.


Asunto(s)
Neoplasias Óseas , Osteosarcoma , Humanos , Niño , Masculino , Femenino , Preescolar , Adolescente , Tasa de Supervivencia , Estudios Retrospectivos , Irán/epidemiología , Ifosfamida , Osteosarcoma/tratamiento farmacológico , Osteosarcoma/epidemiología , Metotrexato , Cisplatino , Doxorrubicina/uso terapéutico , Neoplasias Óseas/tratamiento farmacológico , Neoplasias Óseas/epidemiología , Protocolos de Quimioterapia Combinada Antineoplásica/efectos adversos , Supervivencia sin Enfermedad
15.
JMIR Pediatr Parent ; 6: e43867, 2023 Mar 30.
Artículo en Inglés | MEDLINE | ID: mdl-36995746

RESUMEN

BACKGROUND: Despite the increasing development of different smartphone apps in the health care domain, most of these apps lack proper evaluation. In fact, with the rapid development of smartphones and wireless communication infrastructure, many health care systems around the world are using these apps to provide health services for people without sufficient scientific efforts to design, develop, and evaluate them. OBJECTIVE: The objective of this study was to evaluate the usability of CanSelfMan, a self-management app that provides access to reliable information to improve communication between health care providers and children with cancer and their parents/caregivers, facilitating remote monitoring and promoting medication adherence. METHODS: We performed debugging and compatibility tests in a simulated environment to identify possible errors. Then, at the end of the 3-week period of using the app, children with cancer and their parents/caregivers filled out the User Experience Questionnaire (UEQ) to evaluate the usability of the CanSelfMan app and their level of user satisfaction. RESULTS: During the 3 weeks of CanSelfMan use, 270 cases of symptom evaluation and 194 questions were recorded in the system by children and their parents/caregivers and answered by oncologists. After the end of the 3 weeks, 44 users completed the standard UEQ user experience questionnaire. According to the children's evaluations, attractiveness (mean 1.956, SD 0.547) and efficiency (mean 1.934, SD 0.499) achieved the best mean results compared with novelty (mean 1.711, SD 0.481). Parents/caregivers rated efficiency at a mean of 1.880 (SD 0.316) and attractiveness at a mean of 1.853 (SD 0.331). The lowest mean score was reported for novelty (mean 1.670, SD 0.225). CONCLUSIONS: In this study, we describe the evaluation process of a self-management system to support children with cancer and their families. Based on the feedback and scores obtained from the usability evaluation, it seems that the children and their parents find CanSelfMan to be an interesting and practical idea to provide reliable and updated information on cancer and help them manage the complications of this disease.

16.
Eur J Ophthalmol ; 33(1): 574-586, 2023 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-35414292

RESUMEN

BACKGROUND/ OBJECTIVES: Despite being the most common intraocular malignancy in childhood, there is a substantial disparity between developing and developed countries in terms of patient and globe survival in retinoblastoma (Rb). The current study intends to determine patient and globe survival before and after the introduction of the new targeted treatment modalities in a developing country. METHODS: Medical records of 350 patients (516 eyes) with retinoblastoma referred to a tertiary referral center for Rb in Tehran, Iran, were reviewed. In order to compare patient and globe survival before and after the availability of the new treatment modalities, including intra-arterial and intravitreal chemotherapy, the patients were divided into group 1 (2001-2007) and group 2 (2008-2018) based on the calendar period of diagnosis. RESULTS: Two-hundred-twenty-three eyes of 149 patients and 293 eyes of 201 patients were categorized into groups 1 and 2, respectively. The 5-year patient survival was 97% across the current survey, and the overall survival rate was 96% in group 1 and 99% in group 2 (P = 0.08). Overall, 50% of eyes with retinoblastoma underwent enucleation, which was the primary in 63% (116/184) of the unilateral and 30% (99/322) of the bilateral cases. Primary enucleation was significantly lower in group 2 (35%) in contrast to group 1 (50%) (P < 0.001). In addition, globe survival improved significantly in the International Classification of Retinoblastoma Groups D (17% in group 1 vs. 66% in group 2, P < 0.001) and E (1% in group 1 vs. 23% in group 2 P < 0.001) during the two timelines. In enucleated eyes, despite the increased rate of prelaminar involvement in group 2 (13% vs. 2% in group 1, P = 0.003), the rate of high-risk histopathologic findings was similar between the two groups. CONCLUSION: Similar to developed countries, the application of new targeted treatment modalities, including intra-arterial and intravitreal chemotherapy, has been associated with significantly improved globe survival in Rb patients. However, it should be noted that even with the availability of these novel treatment options, the decision for on-time enucleation should not be deferred.


Asunto(s)
Neoplasias de la Retina , Retinoblastoma , Humanos , Lactante , Retinoblastoma/tratamiento farmacológico , Retinoblastoma/diagnóstico , Neoplasias de la Retina/tratamiento farmacológico , Neoplasias de la Retina/diagnóstico , Enucleación del Ojo , Irán , Estudios Retrospectivos , Resultado del Tratamiento
17.
JMIR Form Res ; 6(4): e36721, 2022 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-35228195

RESUMEN

BACKGROUND: The unique features of smartphones have extended their use in different fields, especially in the health care domain. These features offer new opportunities to support patients with chronic conditions by providing them with information, education, and self-management skills. We developed a digital self-management system to support children with cancer and their caregivers in Iran (low- and middle-income country). OBJECTIVE: This study is aimed at the development and preliminary evaluation of a cancer self-management system (CanSelfMan) tailored to the needs of children with cancer and their parents or caregivers. METHODS: This study was conducted in collaboration with a multidisciplinary team between January and February 2020 at MAHAK's Pediatric Cancer Treatment and Research Center. We developed a self-management system in six stages: requirement analysis, conformity assessment, preparation of educational content, app prototyping, preliminary evaluation, and developing the final version. RESULTS: A total of 35 people (n=24, 69% parents and n=11, 31% children) volunteered to participate in the study. However, only 63% (15/24) of parents and 73% (8/11) of children were eligible to participate. By adopting a user-centered design approach, we developed a mobile app, CanSelfMan, that includes five main modules (knowledge base, self-management tips, self-assessment report, ask a question, and reminders) that provide access to reliable information about acute lymphocytic leukemia and the self-management skills required for side effect measurement and reporting. A web-based dashboard was also developed for oncologists and included a dashboard to monitor users' symptoms and answer their questions. CONCLUSIONS: The CanSelfMan app can support these groups by providing access to reliable information about cancer, facilitating communication between children or parents and health care providers, and helping promote medication adherence through a reminder function. The active participation of the target group can help identify their needs. Therefore, through the involvement of stakeholders such as patients, caregivers, and oncologists in the design process, we improved usability and ensured that the final product was useful. This app is now ready to proceed with feasibility studies.

18.
Int J Hematol Oncol Stem Cell Res ; 16(2): 86-93, 2022 Apr 01.
Artículo en Inglés | MEDLINE | ID: mdl-36304728

RESUMEN

Background: The childhood cancer registry in Iran is a hospital-based system and there is not any unique and national registry system for pediatric malignancies in Iran. According to the limitations and requirements, this study was designed to clarify the aspect of childhood malignancies in Iran and promote establishing the Iranian national childhood cancer registry system. Materials and Methods: This cross-sectional longitudinal study was implied on 1500 patients younger than 20-years old diagnosed with any malignancy and admitted at MAHAK Pediatric Cancer Treatment and Research Center (MPCTRC) from 2007 to 2014. Data collection was based on a validated questionnaire with three categories including demographic data, clinical data and type of malignancy, and outcomes. Collected data were analyzed using methods for qualitative and quantitative variables (P < 0.05) by SPSS software version 22. The survival rate was calculated by the Kaplan-Meyer method. Results: This study was implied on 1500 children with a mean age of 6.1 years old. The most common malignancy was acute leukemia (30.7%) followed by central nervous system tumors (27%). At the onset of starting treatment, the rate of conferring with relapse, metastasis, and secondary malignancies was 29%, 19.5%, and 1% respectively. In addition, 52 patients had bone marrow transplantation of whom, 14 cases died. Totally, 42% of patients died and the 3-years, 5-years, and 10-years overall survival rates were 67.7% ± 0.01, 60.3% ± 0.01, and 53.8% ± 0.01, respectively. Conclusion: Establishing a population-based pediatric cancer registry in Iran is necessary and will be useful for improving the survival rate of mentioned patients.

19.
J Curr Ophthalmol ; 34(1): 100-105, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35620369

RESUMEN

Purpose: To present primary ocular manifestations in acute leukemia. Methods: This cross-sectional descriptive hospital-based study evaluated all newly diagnosed leukemia patients of three referral hospitals of Tehran University of Medical Sciences in 2015-2016 and Mahak Hospital in Tehran in 2017. Exclusion criteria included the patients with the previous history of chemotherapy, cases of relapsing disease, and the patients with a history of ocular disease or other systemic conditions with ophthalmic manifestations. Results: A total of 85 patients (170 eyes) were evaluated in our study, including 29 children (34.1%) and 43 females (50.6%). The mean patient age was 37.84 ± 11.91 years in the adult group and 6.28 ± 4.70 years in the pediatric category. Ophthalmic involvement was seen in 27 patients (31.8%), including 6 pediatric patients (20.7%) and 21 adult patients (37.5%). Two patients (2.3%) had direct infiltration by leukemic cells and 76 patients (89.41%) of patients were asymptomatic. There was a correlation between ophthalmic involvement and platelet count and hemoglobin level. In patients with ocular signs, higher mortality rates were observed. Conclusions: At the time of diagnosis in acute leukemia patients, complete ophthalmic evaluation including dilated fundus examination is suggested as ocular involvement in these patients is common and sometimes asymptomatic. Ophthalmic involvement in leukemic patients should be identified in a timely manner, particularly in individuals with low platelet counts and hemoglobin levels, due to the potential prognostic relevance.

20.
Case Rep Oncol ; 14(2): 892-895, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-34248556

RESUMEN

BK virus rarely causes disease but is typically associated with patients who have had a transplant. The cornerstone of therapy is reduction in immunosuppression. A recent surge in BKVAN correlates with use of potent immunosuppressant drugs, such as tacrolimus and mycophenolate mofetil. Studies have not shown any correlation between BKVAN and a single immunosuppressive agent but rather the overall immunosuppressive load. A 12-year-old male with recurrent acute myeloblastic leukemia (M4) was undergoing chemotherapy regimen at MAHAK Pediatric Cancer Treatment and Research Center. Following 28 days of allogenic transplantation with protocol BU/CY/Mel from his brother, he had severe hematuria in urine. So he was screened for the reason of hematuria. The results of screening showed that he had positive BK virus in urine (viral load PCR tests: 7128037228 IU/ML). According to grade IV hemorrhagic cystic, cidofovir was administered for the first time as IV and then 2 times as intravesical. After the administration of cidofovir, the symptoms of hematuria improved and the load of BK virus decreased that finally accounted as zero. Cidofovir could be the target issue in patients' recovery. Authors suggest further evaluations of cidofovir both in allogeneic stem cell transplantation setting and in renal allograft patients to consider its impact on BKV and nephropathy.

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