RESUMO
Female patients with childhood, adolescent, and young adult cancer are at increased risk for fertility impairment when treatment adversely affects the function of reproductive organs. Patients and their families desire biological children but substantial variations in clinical practice guidelines reduce consistent and timely implementation of effective interventions for fertility preservation across institutions. As part of the PanCareLIFE Consortium, and in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in female patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. This clinical practice guideline leverages existing evidence and international expertise to develop transparent recommendations that are easy to use to facilitate the care of female patients with childhood, adolescent, and young adult cancer who are at high risk for fertility impairment. A complete review of the existing evidence, including a quality assessment, transparent reporting of the guideline panel's decisions, and achievement of global interdisciplinary consensus, is an important result of this intensive collaboration.
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Sobreviventes de Câncer , Preservação da Fertilidade/tendências , Neoplasias/epidemiologia , Neoplasias/terapia , Adolescente , Adulto , Criança , Feminino , Guias como Assunto , Humanos , Neoplasias/complicações , Neoplasias/patologia , Medição de Risco , Adulto JovemRESUMO
Male patients with childhood, adolescent, and young adult cancer are at an increased risk for infertility if their treatment adversely affects reproductive organ function. Future fertility is a primary concern of patients and their families. Variations in clinical practice are barriers to the timely implementation of interventions that preserve fertility. As part of the PanCareLIFE Consortium, in collaboration with the International Late Effects of Childhood Cancer Guideline Harmonization Group, we reviewed the current literature and developed a clinical practice guideline for fertility preservation in male patients who are diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger, including guidance on risk assessment and available methods for fertility preservation. The Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the available evidence and to form the recommendations. Recognising the need for global consensus, this clinical practice guideline used existing evidence and international expertise to rigorously develop transparent recommendations that are easy to use to facilitate the care of male patients with childhood, adolescent, and young adult cancer who are at high risk of fertility impairment and to enhance their quality of life.
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Preservação da Fertilidade/tendências , Neoplasias/epidemiologia , Neoplasias/terapia , Adolescente , Adulto , Sobreviventes de Câncer , Criança , Guias como Assunto , Humanos , Masculino , Neoplasias/complicações , Neoplasias/patologia , Medição de Risco , Adulto JovemRESUMO
Patients with childhood, adolescent, and young adult cancer who will be treated with gonadotoxic therapies are at increased risk for infertility. Many patients and their families desire biological children but effective communication about treatment-related infertility risk and procedures for fertility preservation does not always happen. The PanCareLIFE Consortium and the International Late Effects of Childhood Cancer Guideline Harmonization Group reviewed the literature and developed a clinical practice guideline that provides recommendations for ongoing communication methods for fertility preservation for patients who were diagnosed with childhood, adolescent, and young adult cancer at age 25 years or younger and their families. Moreover, the guideline panel formulated considerations of the ethical implications that are associated with these procedures. Grading of Recommendations Assessment, Development and Evaluation methodology was used to grade the evidence and recommendations. In this clinical practice guideline, existing evidence and international expertise are combined to develop transparent recommendations that are easy to use to facilitate ongoing communication between health-care providers and patients with childhood, adolescent, and young adult cancer who might be at high risk for fertility impairment and their families.
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Sobreviventes de Câncer , Preservação da Fertilidade/ética , Guias como Assunto , Neoplasias/epidemiologia , Adolescente , Adulto , Criança , Progressão da Doença , Feminino , Preservação da Fertilidade/tendências , Humanos , Masculino , Neoplasias/complicações , Neoplasias/patologia , Neoplasias/terapia , Adulto JovemRESUMO
Although pain is one of the most prevalent and bothersome symptoms children with cancer experience, evidence-based guidance regarding assessment and management is lacking. With 44 international, multidisciplinary healthcare professionals and nine patient representatives, we aimed to develop a clinical practice guideline (following GRADE methodology), addressing assessment and pharmacological, psychological, and physical management of tumor-, treatment-, and procedure-related pain in children with cancer. In this paper, we present our thorough methodology for this development, including the challenges we faced and how we approached these. This lays the foundation for our clinical practice guideline, for which there is a high clinical demand.
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Medicina Baseada em Evidências , Neoplasias/complicações , Manejo da Dor/métodos , Dor/prevenção & controle , Guias de Prática Clínica como Assunto/normas , Criança , Humanos , Dor/etiologia , PrognósticoRESUMO
BACKGROUND: Current treatment strategies in pediatric oncology are intensive and lead to high survival rates but also to treatment-related complications. Therefore, supportive care plays an increasingly important role. This study was designed to evaluate variations in supportive care practice in children with cancer in the Netherlands and adherence to selected existing international guidelines through an in-depth review of local guidelines and protocols at all 6 Dutch pediatric cancer centers. METHODS: Based on shared expert opinion, a questionnaire regarding current supportive care practice was compiled. For each center, the required information was extracted from local supportive care guidelines, and the list was sent to a pediatric oncologist of that center to verify its correspondence with local daily practice. Subsequently, it was determined whether clinical practice was concordant (same in ≥ 5 of 6 centers), partly concordant (highly overlapping in ≥ 5 of 6 centers), or discordant (same in < 5 of 6 centers). Local practices were compared with strong recommendations from high-quality, evidence-based guidelines. RESULTS: The questionnaire comprised 67 questions regarding supportive care practice. Concordance was observed for 11 of 67 practice items (16%), partial concordance was observed for 6 of 67 practice items (9%), and discordance was observed for 50 of 67 practice items (75%). Adherence to strong recommendations of 4 high-quality, evidence-based guidelines varied but was generally low. CONCLUSIONS: Large variations exist in pediatric oncology supportive care practice, and this could negatively influence care. Adherence to existing evidence-based guidelines and the development and implementation of new clinical practice guidelines have the potential of standardizing supportive care practice and thereby improving outcomes for children with cancer.
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Antineoplásicos/efeitos adversos , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/prevenção & controle , Oncologia , Neoplasias/terapia , Manejo da Dor/métodos , Cuidados Paliativos/métodos , Padrões de Prática Médica , Lesões por Radiação/prevenção & controle , Radioterapia/efeitos adversos , Criança , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/diagnóstico , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/terapia , Medicina Baseada em Evidências , Humanos , Países Baixos , Guias de Prática Clínica como Assunto , Lesões por Radiação/diagnóstico , Lesões por Radiação/terapia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Fertility preservation care for children, adolescents, and young adults (CAYAs) with cancer is not uniform among practitioners. To ensure high-quality care, evidence-based clinical practice guidelines (CPGs) are essential. The authors identified existing CPGs for fertility preservation in CAYAs with cancer, evaluated their quality, and explored differences in recommendations. METHODS: A systematic search in PubMed (January 2000-October 2014); guideline databases; and Web sites of oncology, pediatric, and fertility organizations was performed. Two reviewers evaluated the quality of the identified CPGs using the Appraisal of Guidelines for Research and Evaluation II Instrument (AGREE II). From high-quality CPGs, the authors evaluated concordant and discordant areas among the recommendations. RESULTS: A total of 25 CPGs regarding fertility preservation were identified. The average AGREE II domain scores (scale of 0%-100%) varied from 15% on applicability to 100% on clarity of presentation. The authors considered 8 CPGs (32%) to be of high quality, which was defined as scores ≥60% in any 4 domains. Large variations in the recommendations of the high-quality CPGs were observed, with 87.2% and 88.6%, respectively, of discordant guideline areas among the fertility preservation recommendations for female and male patients with cancer. CONCLUSIONS: Only approximately one-third of the identified CPGs were found to be of sufficient quality. Of these CPGs, the fertility preservation recommendations varied substantially, which can be a reflection of inadequate evidence for specific recommendations, thereby hindering the ability of providers to deliver high-quality care. CPGs including a transparent decision process for fertility preservation can help health care providers to deliver optimal and uniform care, thus improving the quality of life of CAYAs with cancer and cancer survivors. Cancer 2016;122:2216-23. © 2016 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.
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Preservação da Fertilidade , Neoplasias/epidemiologia , Adolescente , Criança , Tomada de Decisão Clínica , Gerenciamento Clínico , Feminino , Humanos , Masculino , Neoplasias/diagnóstico , Neoplasias/terapia , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde , Fatores Sexuais , Adulto JovemRESUMO
OBJECTIVE: Self-reported data show differences in social outcomes (not being married/having a registered partnership; not living independently; using social benefits) for childhood cancer survivors compared with their peers. We aimed to determine differences in these social outcomes between survivors and the general population using national register data and explored associated risk factors. METHODS: We performed medical record linkage between a single-centre cohort of 1768 ≥ 5-year survivors of childhood cancer (diagnosed 1966-2001) and two national registers (1999-2011) and obtained a random reference sample matched on gender and year of birth per survivor. We used multivariable logistic regression to calculate in adult survivors of childhood cancer (born before 1990) the odds of the specified social outcomes at the end of follow-up in both groups. Within the survivors, we analysed risk factors for the social outcomes. RESULTS: We retrieved data from 1283 adult childhood cancer survivors and 25 082 reference persons. Survivors had higher odds (odds ratio; 95% confidence interval) of not being married (1.2; 1.07-1.42), not living independently (1.7; 1.41-2.00) and using social benefits (2.3; 1.98-2.69) compared with reference persons. Radiotherapy to head and/or neck, and an original central nervous system tumour diagnosis negatively influenced all social outcomes examined in childhood cancer survivors. CONCLUSIONS: National register data show differences between social outcomes in childhood cancer survivors and the general population, especially for survivors treated with radiotherapy to head and/or neck and those originally diagnosed with central nervous system tumours. Development and implementation of effective targeted support strategies to improve social outcomes of childhood cancer survivors needs consideration. Copyright © 2015 John Wiley & Sons, Ltd.
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Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/epidemiologia , Sistema de Registros , Adulto , Sobreviventes de Câncer/psicologia , Neoplasias do Sistema Nervoso Central , Criança , Estudos de Coortes , Feminino , Humanos , Modelos Logísticos , Masculino , Registro Médico Coordenado , Neoplasias/psicologia , Neoplasias/terapia , Razão de Chances , Fatores de RiscoRESUMO
OBJECTIVE: To explore which socioeconomic and demographic characteristics influence Colombian women to utilize screening mammography (SMMG). MATERIALS AND METHODS: Data of women aged 40-49 years (n=12 345) and 50-69 years (n=14 771) from the Colombian national survey of demography and health 2010 was analyzed. Risk estimates (odds ratios, OR) of self-reported SMMG use were obtained using logistic regression. RESULTS: Among women aged 50-69 years, high wealth index (OR=4.7; CI95%, 3.9-5.8), affiliation to special or contributory health insurance regime (OR=3.4; CI95% 2.6-4.6 and OR=2.5; CI95% 2.1-3.0 respectively), health consultation in previous year (OR=2.7; CI95% 2.3-3.1), high education level (OR=2.3; CI95% 1.8-2.9) and very good self-reported health (OR=1.5; CI95% 1.1-2.0) positively influenced SMMG utilization. Among women aged 40-49 years, likelihood of having a SMMG was high after a health consultation in the previous year. CONCLUSIONS: Socioeconomic and demographic differences in use of SMMG need to be contemplated in screening recommendations before considering an organized population-based programme.
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Neoplasias da Mama/diagnóstico , Detecção Precoce de Câncer/estatística & dados numéricos , Mamografia/estatística & dados numéricos , Adulto , Idoso , Colômbia , Feminino , Humanos , Pessoa de Meia-Idade , Fatores SocioeconômicosRESUMO
BACKGROUND: Children with cancer often undergo long treatment trajectories involving repeated needle procedures that potentially cause pain and distress. As part of a comprehensive effort to develop clinical practice guidelines (CPGs) to address pain prevention and management in children with cancer, we aimed to provide recommendations on the pharmacological and psychological management of procedure-related pain and distress. METHODS: Of the international inter-disciplinary CPG development panel (44 individuals), two working groups including 13 healthcare professionals focused on procedural pain and distress. Grading of Recommendations Assessment, Development and Evaluation methodology was used, including the use of systematic literature reviews to inform recommendations and the use of evidence to decision frameworks. At an in-person meeting in February 2018, the guideline panel discussed these frameworks and formulated recommendations which were then discussed with a patient-parent panel consisting of 4 survivors and 5 parents. RESULTS: The systematic reviews led to the inclusion of 48 randomised controlled trials (total number of participants = 2271). Quality of evidence supporting the recommendations ranged from very low to moderate. Strong recommendations were made for the use of topical anesthetics in all needle procedures, for offering deep sedation (DS)/general anesthesia (GA) to all children undergoing lumbar puncture, for the use of DS/ GA in major procedures in children of all ages, for the use of hypnosis in all needle procedures and for the use of active distraction in all needle procedures. CONCLUSION: In this CPG, an evidence-based approach to manage procedure-related pain and distress in children with cancer is presented. As children with cancer often undergo repeated needle procedures during treatment, prevention and alleviation of procedure-related pain and distress is of the utmost importance to increase quality of life in these children and their families.
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Antineoplásicos/administração & dosagem , Agulhas/efeitos adversos , Neoplasias/tratamento farmacológico , Dor Processual/prevenção & controle , Estresse Psicológico/prevenção & controle , Fatores Etários , Criança , Medicina Baseada em Evidências/métodos , Medicina Baseada em Evidências/normas , Humanos , Injeções/efeitos adversos , Injeções/psicologia , Oncologia/métodos , Oncologia/normas , Neoplasias/psicologia , Dor Processual/etiologia , Dor Processual/psicologia , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Estresse Psicológico/etiologiaRESUMO
BACKGROUND: Pain in children and adolescents with cancer has been identified as an area where many healthcare professionals seek guidance. This protocol details a systematic review whose aim is to explore current knowledge regarding measurement instruments to assess pain (and pain-related distress) in children and adolescents with cancer. After completion of the review, the information will be used in the development of a clinical practice guideline. METHODS: We will search four electronic databases (MEDLINE via PubMed, CINAHL, PsycINFO and HaPI). Additional relevant studies will be identified by reference checking and expert consultation. All citations will be screened independently by two reviewers in a three-step approach: first selection based on title, second selection based on abstract, third selection based on full-text. Studies in children and adolescents with cancer that aimed to evaluate the clinimetric properties of an existing pain measurement instrument or to develop a new pain measurement instrument and that include at least one relevant outcome (reliability, validity, responsiveness, interpretability, clinical utility) are eligible for inclusion. For all steps of evidence selection, a detailed list with eligibility criteria will be determined a priori. Data extraction and quality assessment of included studies (according to the COnsensus-based Standards for the selection of health Measurement INstruments, COSMIN criteria) will be conducted independently by two authors. DISCUSSION: This systematic review will provide an overview of the current literature regarding measurement instruments to assess pain in children and adolescents with cancer. This knowledge synthesis will be used to formulate recommendations for clinical practice. Also, by synthesizing existing evidence, knowledge gaps will be identified. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42017072879.
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Dor do Câncer/diagnóstico , Neoplasias/fisiopatologia , Revisões Sistemáticas como Assunto , Adolescente , Criança , Pré-Escolar , Humanos , Lactente , Recém-Nascido , Medição da Dor/métodos , Projetos de PesquisaRESUMO
Background Heart failure is one of the most important late effects after treatment for cancer in childhood. The goals of this study were to evaluate the risk of heart failure, temporal changes by treatment periods, and the risk factors for heart failure in childhood cancer survivors ( CCS ). Methods and Results The DCOG-LATER (Dutch Childhood Oncology Group-Long-Term Effects After Childhood Cancer) cohort includes 6,165 5-year CCS diagnosed between 1963 and 2002. Details on prior cancer diagnosis and treatment were collected for this nationwide cohort. Cause-specific cumulative incidences and risk factors of heart failure were obtained. Cardiac follow-up was complete for 5,845 CCS (94.8%). After a median follow-up of 19.8 years and at a median attained age of 27.3 years, 116 survivors developed symptomatic heart failure. The cumulative incidence of developing heart failure 40 years after childhood cancer diagnosis was 4.4% (3.4%-5.5%) among all CCS. The cumulative incidence of heart failure grade ≥3 among survivors treated in the more recent treatment periods was higher compared with survivors treated earlier (Gray test, P=0.05). Mortality due to heart failure decreased in the more recent treatment periods (Gray test, P=0.02). In multivariable analysis, survivors treated with a higher dose of mitoxantrone or cyclophosphamide had a higher risk of heart failure than survivors who were exposed to lower doses. Conclusions CCS treated with mitoxantrone, cyclophosphamide, anthracyclines, or radiotherapy involving the heart are at a high risk for severe, life-threatening or fatal heart failure at a young age. Although mortality decreased, the incidence of severe or life-threatening heart failure increased with more recent treatment periods.
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Sobreviventes de Câncer/estatística & dados numéricos , Previsões , Insuficiência Cardíaca/epidemiologia , Neoplasias/induzido quimicamente , Medição de Risco/métodos , Adolescente , Adulto , Idoso , Criança , Feminino , Seguimentos , Insuficiência Cardíaca/etiologia , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Neoplasias/radioterapia , Países Baixos/epidemiologia , Estudos Retrospectivos , Fatores de Risco , Taxa de Sobrevida/tendências , Adulto JovemRESUMO
AIMS: Survival after cancer diagnosed during childhood or adolescence continues to improve with new treatments and supportive therapies. Optimal long-term care requires that risks to vulnerable organs are clearly defined and translated into guidelines that are implemented into practice. PanCareLIFE is a pan-European consortium that addresses survivorship issues comprising fertility, hearing impairment and quality of life. This article describes the scientific basis of PanCareLIFE's studies. METHODS: PanCareLIFE involves 17 partner institutions from eight European countries, with additional 11 data providers from five other countries. Study designs and methods include molecular genetic, cohort and case-control studies, a longitudinal study and an intervention study. Ethics and data protection issues have been taken into account from the beginning. RESULTS: PanCareLIFE will investigate the way that treatment impairs female fertility, by evaluating anti-Müllerian hormone levels and the underlying genetic susceptibility to loss of fertility. For our fertility studies, more than 6000 survivors have completed questionnaires, more than 1500 provided serum samples and more than 400 case-control triads have been identified. Fertility preservation guidelines for boys and girls will be developed. More than 2000 survivors have contributed audiograms for the ototoxicity study. Almost 1000 samples were sent for genetic analysis related to ototoxicity and gonadal reserve. The SF-36 questionnaire will measure quality of life in more than 10,000 survivors. CONCLUSIONS: The large number of subjects enrolled in PanCareLIFE and the detailed information accumulated will allow in-depth evaluation of important outcomes. Fertility preservation guidelines will help patients and their families make informed decisions and contribute to their long-term well-being.
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Qualidade de Vida/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Europa (Continente) , Estudos de Viabilidade , Feminino , Preservação da Fertilidade , Humanos , Lactente , Recém-Nascido , Assistência de Longa Duração , Masculino , Neoplasias , Projetos Piloto , Sobreviventes , Adulto JovemRESUMO
Childhood cancer survivors (CCS) experience higher hospitalization rates compared to the general population for neoplasms, circulatory diseases, endocrine/nutritional/metabolic diseases and eye disorders. We studied trends in hospitalization rates and associated patient and treatment-specific risk factors for diagnosis subgroups among these four diseases. We performed medical record linkage of a ≥5-year CCS cohort with national registers, and obtained a random reference sample matched on age, gender and calendar year per CCS. For each diagnosis subgroup we compared hospitalization rates and trends over time in CCS and the reference population. Further, we analyzed risk factors for hospitalizations within the four CCS diagnosis groups. We used multivariate Poisson regression for all models. We retrieved hospitalization data from 1382 CCS and 26,583 reference persons. CCS had increased hospitalization rates for almost all diagnosis subgroups examined. Hospitalization rates for endocrine/nutritional/metabolic diseases appeared to increase with longer time since primary cancer diagnosis up to 30 years after primary cancer diagnosis. Survivors initially treated with radiotherapy had increased hospitalization rates for neoplasms (P < 0.001), those initially treated with anthracyclines (2.5 [1.1-5.5]) and radiotherapy to thorax and/or abdomen (9.3 [2.4-36.6]) had increased hospitalization rates for diseases of the circulatory system, and those initially treated with radiotherapy to head and/or neck had increased hospitalization rates for endocrine/nutritional/metabolic diseases (6.7 [3.5-12.7]) and diseases of the eye (3.6 [1.5-8.9]). Our study highlights that long-term health problems resulting in hospitalizations are still clinically relevant later in life of CCS. The identified treatment-related risk factors associated with hospitalizations support targeted follow-up care for these risk groups of CCS.
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Adultos Sobreviventes de Eventos Adversos na Infância/psicologia , Sobreviventes de Câncer/psicologia , Hospitalização/tendências , Adulto , Antraciclinas/efeitos adversos , Feminino , Humanos , Masculino , Registro Médico Coordenado , Pessoa de Meia-Idade , Radioterapia/efeitos adversos , Fatores de Risco , Adulto JovemRESUMO
Hospitalization rates over time of childhood cancer survivors (CCS) provide insight into the burden of unfavorable health conditions on CCS and health care resources. The objective of our study was to examine trends in hospitalizations of CCS and risk factors in comparison with the general population. We performed a medical record linkage study of a cohort of 1564 ≥five-year CCS with national registers. We obtained a random sample of the general population matched on year of birth, gender and calendar year per CCS retrieved. We quantified and compared hospitalization rates of CCS and reference persons from 1995 until 2005, and we analyzed risk factors for hospitalization within the CCS cohort with multivariable Poisson models. We retrieved hospitalization information from 1382 CCS and 25583 reference persons. The overall relative hospitalization rate (RHR) was 2.2 (95%CI:1.9-2.5) for CCS compared to reference persons. CCS with central nervous system and solid tumors had highest RHRs. Hospitalization rates in CCS were increased compared to reference persons up to at least 30 years after primary diagnosis, with highest rates 5-10 and 20-30 years after primary cancer. RHRs were highest for hospitalizations due to neoplasms (10.7; 95%CI:7.1-16.3) and endocrine/nutritional/metabolic disorders (7.3; 95%CI:4.6-11.7). Female gender (P<0.001), radiotherapy to head and/or neck (P<0.001) or thorax and/or abdomen (P = 0.03) and surgery (P = 0.01) were associated with higher hospitalization rates in CCS. In conclusion, CCS have increased hospitalization rates compared to the general population, up to at least 30 years after primary cancer treatment. These findings imply a high and long-term burden of unfavorable health conditions after childhood cancer on survivors and health care resources.
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Efeitos Psicossociais da Doença , Hospitalização/estatística & dados numéricos , Modelos Estatísticos , Neoplasias/reabilitação , Sistema de Registros , Sobreviventes/estatística & dados numéricos , Adulto , Estudos de Casos e Controles , Feminino , Cabeça/efeitos da radiação , Humanos , Estudos Longitudinais , Masculino , Registro Médico Coordenado , Pessoa de Meia-Idade , Pescoço/efeitos da radiação , Neoplasias/classificação , Neoplasias/patologia , Neoplasias/terapia , Países Baixos , Fatores de Risco , Fatores Sexuais , Tórax/efeitos da radiaçãoRESUMO
BACKGROUND AND AIM: Childhood cancer survivors are at high risk of long-term adverse effects of cancer and its treatment, including cardiac events. The pan-European PanCareSurFup study determined the incidence and risk factors for cardiac events among childhood cancer survivors. The aim of this article is to describe the methodology of the cardiac cohort and nested case-control study within PanCareSurFup. METHODS: Eight data providers in Europe participating in PanCareSurFup identified and validated symptomatic cardiac events in their cohorts of childhood cancer survivors. Data on symptomatic heart failure, ischemia, pericarditis, valvular disease and arrhythmia were collected and graded according to the Criteria for Adverse Events. Detailed treatment data, data on potential confounders, lifestyle related risk factors and general health problems were collected. RESULTS: The PanCareSurFup cardiac cohort consisted of 59,915 5-year childhood cancer survivors with malignancies diagnosed between 1940 and 2009 and classified according to the International Classification of Childhood Cancer 3. Different strategies were used to identify cardiac events such as record linkage to population/ hospital or regional based databases, and patient- and general practitioner-based questionnaires. CONCLUSION: The cardiac study of the European collaborative research project PanCareSurFup will provide the largest cohort of 5-year childhood cancer survivors with systematically ascertained and validated data on symptomatic cardiac events. The result of this study can provide information to minimize the burden of cardiac events in childhood cancer survivors by tailoring the follow-up of childhood cancer survivors at high risk of cardiac adverse events, transferring this knowledge into evidence-based clinical practice guidelines and providing a platform for future research studies in childhood cancer patients. .
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Cardiopatias/epidemiologia , Neoplasias/complicações , Adolescente , Adulto , Estudos de Casos e Controles , Criança , Pré-Escolar , Estudos de Coortes , Europa (Continente)/epidemiologia , Humanos , Lactente , Fatores de Risco , Sobreviventes , Adulto JovemRESUMO
In the Netherlands, the postal code is needed to study hospitalizations of individuals in the nationwide hospitalization register. Studying hospitalizations longitudinally becomes troublesome if individuals change address. We aimed to report on the feasibility and validity of a two-step medical record linkage approach to examine longitudinal trends in hospitalizations and mortality in a study cohort. First, we linked a study cohort of 1564 survivors of childhood cancer with the Municipal Personal Records Database (GBA) which has postal code history and mortality data available. Within GBA, we sampled a reference population matched on year of birth, gender and calendar year. Second, we extracted hospitalizations from the Hospital Discharge Register (LMR) with a date of discharge during unique follow-up (based on date of birth, gender and postal code in GBA). We calculated the agreement of death and being hospitalized in survivors according to the registers and to available cohort data. We retrieved 1477 (94%) survivors from GBA. Median percentages of unique/potential follow-up were 87% (survivors) and 83% (reference persons). Characteristics of survivors and reference persons contributing to unique follow-up were comparable. Agreement of hospitalization during unique follow-up was 94% and agreement of death was 98%. In absence of unique identifiers in the Dutch hospitalization register, it is feasible and valid to study hospitalizations and mortality of individuals longitudinally using a two-step medical record linkage approach. Cohort studies in the Netherlands have the opportunity to study mortality and hospitalization rates over time. These outcomes provide insight into the burden of clinical events and healthcare use in studies on patients at risk of long-term morbidities.
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Bases de Dados Factuais , Hospitalização , Neoplasias/mortalidade , Sistema de Registros , Adolescente , Criança , Pré-Escolar , Intervalo Livre de Doença , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Neoplasias/terapia , Países Baixos/epidemiologia , Estudos Retrospectivos , Taxa de SobrevidaRESUMO
Objective. To explore which socioeconomic and demographic characteristics influence Colombian women to utilize screening mammography (SMMG). Materials and methods. Data of women aged 40-49 years (n=12 345) and 50-69 years (n=14 771) from the Colombian national survey of demography and health 2010 was analyzed. Risk estimates (odds ratios, OR) of self-reported SMMG use were obtained using logistic regression. Results. Among women aged 50-69 years, high wealth index (OR=4.7; CI95%, 3.9-5.8), affiliation to special or contributory health insurance regime (OR=3.4; CI95% 2.6-4.6 and OR=2.5; CI95% 2.1-3.0 respectively), health consultation in previous year (OR=2.7; CI95% 2.3-3.1), high education level (OR=2.3; CI95% 1.8-2.9) and very good self-reported health (OR=1.5; CI95% 1.1-2.0) positively influenced SMMG utilization. Among women aged 40-49 years, likelihood of having a SMMG was high after a health consultation in the previous year. Conclusions. Socioeconomic and demographic differences in use of SMMG need to be contemplated in screening recommendations before considering an organized population-based programme.
Objetivo. Explorar qué características socioeconómicas y demográficas influencian la utilización de mamografía de tamizaje (MT) en mujeres colombianas. Material y métodos. Se analizaron datos de mujeres entre 40 y 49 años (n=12 345) y 50-69 años (n=14 771) de la Encuesta Nacional de Demografía y Salud 2010 y estimaciones de riesgo (odds ratios, OR) del uso autorreportado de MT obtenidas usando regresión logística. Resultados. En mujeres de 50-69 años con alto índice de riqueza (OR=4.7; IC95% 3.9-5.8), la afiliación al seguro de salud especial o contributivo (OR=3.4; IC95% 2.6-4.6 y OR=2.5; 2.1-3.0 respectivamente), consulta de salud el año previo (OR=2.7; IC95% 2.3-3.1), alto nivel educativo (OR=2.3; IC95% 1.8-2.9) y muy buena salud autoreportada (OR=1.5; IC95% 1.1-2.0) influyeron positivamente en la utilización de MT. En mujeres de 40 y 49 años, hubo alta probabilidad de uso de MT si había consulta de salud el año previo. Conclusiones. Las diferencias socioeconómicas y demográficas en uso de MT deben contemplarse en recomendaciones de cribado antes de implementar tamización organizada.