Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 22
Filtrar
1.
J Pediatr Hematol Oncol ; 40(8): 580-587, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-29901560

RESUMO

Health-related quality of life (HRQL) improved progressively during therapy and beyond in children treated for acute lymphoblastic leukemia on the Dana-Farber Cancer Institute (DFCI) 95-01 protocol. This study aimed to validate that trajectory in a successor study (DFCI 00-01) and to compare the HRQL of patients in the 2 studies. Children aged above 5 years were assessed during each phase of treatment (N=4) and 2 years after completion of therapy. Health status and HRQL were measured using Health Utilities Index (HUI) instruments, HUI2 and HUI3. Quality-adjusted life years (QALYs) were calculated and compared with the general population, and patients treated on DFCI 95-01. Over 5 intervals and 758 HUI assessments, mean HRQL increased progressively from remission induction to the time after treatment (P<0.001). During intensification, high-risk patients had lower HRQL than standard-risk patients (P<0.001). During remission induction, patients on DFCI 95-01 had lower HRQL than patients on DFCI 00-01. Patients on DFCI 00-01 had ~0.2 and 0.3 fewer QALYs than controls, measured by HUI2 and HUI3, respectively. QALYs for DFCI 00-01 patients during treatment were similar to those for DFCI 95-01 patients. The trajectory of improvement in HRQL during the treatment of acute lymphoblastic leukemia in children was confirmed.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica , Nível de Saúde , Leucemia-Linfoma Linfoblástico de Células Precursoras/tratamento farmacológico , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Feminino , Seguimentos , Humanos , Lactente , Masculino
2.
J Pediatr Hematol Oncol ; 37(5): 362-7, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-26018809

RESUMO

Survivors of brain tumors in childhood experience adverse sequelae that are greater in prevalence and severity than those encountered by survivors of all other forms of cancer in early life, reflected in a burden of morbidity by instruments measuring health-related quality of life (HRQL). However, there are few studies of the change in HRQL over time in such populations. Patients who were above 5 years of age, at least 2 years from completion of therapy, and able to communicate in English were eligible for study of HRQL by the Health Utilities Index HUI2 and HUI3 at study entry, and again 5 and 10 years later. An initial cohort of 40 patients was reduced to 37 and 25 at the second and third time points, respectively, although only 1 death occurred during the study. HRQL showed a progressive decline over the decade, reaching conventional levels of clinical significance for the sizes of the changes. Median scores for HUI2 were 0.93, 0.90, and 0.88; and for HUI3 were 0.88, 0.85, and 0.77 at baseline, 5, and 10 years, respectively. The serial decline in HRQL demands further examination and an exploration of potential targets for therapeutic intervention.


Assuntos
Neoplasias Encefálicas/complicações , Qualidade de Vida , Sobreviventes/estatística & dados numéricos , Adolescente , Adulto , Idade de Início , Criança , Pré-Escolar , Nível de Saúde , Humanos , Inquéritos e Questionários , Tempo
3.
J Adolesc Young Adult Oncol ; 4(3): 129-36, 2015 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-26812665

RESUMO

PURPOSE: Children surviving brain tumors are frequently identified as having substantially decreased health-related quality of life (HRQL) in cross-sectional studies. This study explored the HRQL of a cohort of such survivors, who were recruited as adolescents and followed for a decade, in order to determine the trajectory of their morbidities. METHOD: Children diagnosed between January 1, 1985, and December 31, 1998, more than 2 years from diagnosis (N = 40), were recruited in 2000/2001 (T1) aged 16.74 ± 4.23 years. Health Utilities Index questionnaires (HUI2/3) were completed in 2000/2001 and again at 5 years (T2) and 10 years (T3), with 37 and 25 participants then aged 21.54 ± 4.29 and 27.97 ± 4.07 years, respectively. In addition to study subjects, parental proxies completed questionnaires at T1 and T2, while study subjects selected proxies at T3. Single attributes (domains/dimensions) of HRQL and details of pain were analyzed. RESULTS: Cognition was the attribute compromised most often (T1 = 66.7% of participants, T2 = 62.2%, T3 = 60.0%). Pain was also reported frequently (T1 = 35%, T2 = 25%, T3 = 52%), and at T3 correlated moderately with HUI2 sensation (0.77) and HUI3 vision (0.44), speech (0.51), and ambulation (0.50). The lower median utility score for pain at T3 than at T1/T2 was a clinically important difference. Severe pain was identified in the lower extremities, back, upper extremities, and abdomen. Morbidity was observed also in emotion (worry HUI2 and unhappiness HUI3), sensation, and vision. CONCLUSION: Decreased HRQL in survivors of brain tumors in childhood is multifaceted. Pain is a prominent burden, along with morbidity in cognition, emotion, sensation, and vision. Further studies should explore pain and neurologic deficits, and potential opportunities for therapeutic intervention.


Assuntos
Neoplasias Encefálicas/mortalidade , Dor/etiologia , Sobreviventes , Neoplasias Encefálicas/complicações , Neoplasias Encefálicas/terapia , Criança , Feminino , Humanos , Masculino
4.
Int J Cancer ; 131(11): 2660-7, 2012 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-22396183

RESUMO

Gains in survival rates among adolescents and young adults (AYA) are reported from the USA to be lower than in both younger and older patients. Limiting factors include low accrual to clinical trials related to the type of institutional care. This study aimed to determine the incidence of cancer in the 15-29 age group in Ontario, and the 5-year survival of these cases by disease class, age at diagnosis group and highest level of institutional complexity of care. The primary data source was Cancer Care Ontario (CCO). Diseases were classified according to an AYA-specific system. Age at diagnosis was grouped as 15-19, 20-24 and 25-29 years; and institutional site of care was categorized as pediatric oncology group of Ontario (POGO) centers, regional cancer centers (RCC-tertiary care centers associated with CCO), RCC affiliate and satellite institutions and other institutions having no specialized cancer services. More than 10,000 incident cases were identified during 1990-2001. Carcinomas and lymphomas each accounted for > 20% of the total. Overall 5-year survival rate was 83%; significantly higher for lymphomas at POGO centers and RCC than elsewhere. About 40% of eligible AYA cases were treated at a POGO center and 25% of those were accrued to clinical trials. The low proportion of adolescents referred to pediatric cancer centers may result in a survival disadvantage for this group. All AYA, especially with lymphomas, should be referred to specialized centers. Accrual of AYA to clinical trials must be improved substantially.


Assuntos
Neoplasias/epidemiologia , Adolescente , Adulto , Humanos , Incidência , Neoplasias/mortalidade , Ontário/epidemiologia , Taxa de Sobrevida , Atenção Terciária à Saúde , Adulto Jovem
5.
Pediatr Blood Cancer ; 59(4): 717-24, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-22294502

RESUMO

BACKGROUND: The objective was to quantify the health-related quality of life (HRQL) of children treated for acute lymphoblastic leukemia (ALL) and identify specific disabilities for remediation. PROCEDURE: Two types of subjects were included: ALL patients 5 plus years old in a multi-center clinical trial and general population control groups. Patients were assessed during all four major phases of active treatment and approximately 2 years after treatment. Health status and HRQL were measured using HEALTH UTILITIES INDEX® (HUI®) Mark 2 (HUI2) and Mark 3 (HUI3). HRQL scores were used to calculate quality-adjusted life years (QALYs). Excess disability rates identified attributes for remediation. RESULTS: HUI assessments (n = 749) were collected during the five phases. Mean HRQL increased from induction through the post-treatment phase (P < 0.001). There were no significant demographic or treatment effects on HRQL, except for type of asparaginase during continuation therapy (P = 0.005 for HUI2 and P = 0.007 for HUI3). Differences in mean HRQL scores between patients and controls were important (P < 0.001) during the active treatment phases but not during the post-treatment phase. Relative to controls, patients lost approximately 0.2 QALYs during active treatment. Disability was evident in mobility/ambulation, emotion, self-care and pain, and declined over time. CONCLUSIONS: Patients with ALL experienced important but declining deficits in HRQL during active treatment phases: Equivalent to losing approximately 2 months of life in perfect health. HRQL within the 2-years post-treatment phase was similar to controls. The policy challenge is to develop new treatment protocols producing fewer disabilities in mobility/ambulation, emotion, self-care, and pain without compromising survival.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Feminino , Nível de Saúde , Humanos , Masculino , Anos de Vida Ajustados por Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Inquéritos e Questionários
6.
Pediatr Blood Cancer ; 56(5): 812-7, 2011 May.
Artigo em Inglês | MEDLINE | ID: mdl-21370416

RESUMO

BACKGROUND: This is a report on the translation and cultural adaptation from English to Turkish languages of a standard HEALTH UTILITIES INDEX® (HUI®) questionnaire for interviewer-administration and proxy assessment of patients' health status, and its use for assessing 50 consecutive pediatric oncology patients during periods of and subsequent recovery from neutropenia. PROCEDURE: Preparation of the Turkish-language questionnaire was a collaborative effort by physician-researchers in Turkey, senior Health Utilities, Inc. staff with extensive experience in the development and translation of HUI questionnaires, and Turkish-born residents of Canada. Standard HUI questionnaires cover both HUI Mark 2 (HUI2) and HUI Mark 3 (HUI3). RESULTS: The mean improvement in overall health-related quality of life (HRQL) scores between neutropenic and non-neutropenic phases was clinically important according to both HUI2 and HUI3 instruments. Single-attribute utility scores showed clinically important size improvements between phases for HUI2 mobility, emotion, and HUI2 self-care. Significant reductions in disability rates between phases were also detected for pain (HUI2 and HUI3 rate decreases of 30%, P < 0.001) and HUI3 ambulation (rate decline of 14%, P = 0.020). CONCLUSIONS: The study results provide evidence that the Turkish-language questionnaire is acceptable, valid and useful for collecting parental assessments of health-status among young cancer patients in Turkey. Neutropenia was associated with important deficits in overall HRQL and disabilities in ambulation/mobility, emotion, self-care, and pain. Treatment plans should include strategies for addressing emotion and pain problems to improve the HRQL of neutropenic patients.


Assuntos
Cultura , Neutropenia/psicologia , Qualidade de Vida/psicologia , Perfil de Impacto da Doença , Adolescente , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Nível de Saúde , Humanos , Lactente , Masculino , Oncologia , Neutropenia/fisiopatologia , Avaliação de Resultados em Cuidados de Saúde , Estudos Prospectivos , Inquéritos e Questionários
7.
J Pediatr Hematol Oncol ; 30(8): 563-70, 2008 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-18799931

RESUMO

There is limited experience with patient-reported measurements of health status and health-related quality of life (HRQL) in survivors of cancer in childhood in low-income countries. The purposes of this study were to collect such measurements in Brazil, to test hypotheses about differences among diagnostic groups, and to compare results with those from other countries. Survivors were eligible if diagnosed with cancer in childhood, attending a long-term follow-up clinic, cancer free, literate, and at least 13 years of age. Health status measurements were collected using a Brazilian Portuguese Health Utilities Index questionnaire. Questionnaire responses were converted to scores for morbidity in individual health attributes and for overall HRQL. More than one-third of the 138 consecutive survivors who participated reported some cognitive disability or pain. Approximately one-quarter reported problems with vision, speech, or emotion. Mean HRQL was similar (P>0.05) among countries for survivors of acute lymphoblastic leukemia and Hodgkin disease. The results support the hypotheses that Brazilian survivors of cancer in childhood experience a wide range of disabilities and impaired HRQL, are similar to those in other countries, and should be assessed in long-term follow-up clinics.


Assuntos
Nível de Saúde , Neoplasias/psicologia , Qualidade de Vida , Sobreviventes/psicologia , Sobreviventes/estatística & dados numéricos , Adolescente , Adulto , Idade de Início , Brasil , Criança , Pré-Escolar , Feminino , Seguimentos , Indicadores Básicos de Saúde , Humanos , Lactente , Masculino , Inquéritos e Questionários
9.
Pediatr Blood Cancer ; 50(4): 838-43, 2008 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-17635006

RESUMO

BACKGROUND: The incidence of cancer in children in Uruguay is similar to that in industrialized societies but the survival rate is half as great. This study assesses another important measure of treatment effectiveness: the health-related quality of life (HRQL) of survivors. METHODS: All new patients diagnosed in a 3-year period were eligible if free of disease for at least 2 years after therapy and at least 7 years of age at the time of study. A sample of convenient subjects for comparison was obtained from schools and clinics for well children. During a 7-month period, Spanish language interviewer-administered questionnaires were used to collect Health Utilities Index data from survivors and the comparison group (self-reports), and from proxies (parents, physicians, and teachers). RESULTS: Of 113 eligible survivors, 95 (84%) participated together with 96 "control" subjects. Control subjects have a higher mean HRQL utility score than survivors (P < 0.001). The mean score for survivors of acute lymphoblastic leukemia (ALL): 0.72 (n = 49) is higher than the score for survivors of brain tumors: 0.60 (n = 20), as expected. Inter-rater agreement is highest between survivors and parents, and lowest between controls and physicians or teachers. CONCLUSIONS: The burden of morbidity in survivors of childhood cancer in Uruguay is considerable and greater than that in a comparative group of healthy children. Survivors of ALL have better HRQL than survivors of brain tumors, mirroring experience elsewhere. The level of inter-rater agreement is related to the degree of familiarity of the pair-members of respondents with each other.


Assuntos
Indicadores Básicos de Saúde , Nível de Saúde , Neoplasias/psicologia , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Variações Dependentes do Observador , Pais , Médicos , Procurador , Sistema de Registros , Inquéritos e Questionários , Uruguai
10.
Plast Reconstr Surg ; 120(1): 13-26, 2007 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-17572539

RESUMO

BACKGROUND: This study assessed the health-related quality of life experienced by breast reduction patients using four reliable and validated health-related quality-of-life measures. METHODS: Consecutive patients with breast hypertrophy completed the Health Utilities Index Mark 2, the Health Utilities Index Mark 3, and the Breast Reduction Assessment Value and Outcomes instruments (the Short Form 36, the Multidimensional Body-Self Rating Questionnaire Appearance Assessment, and the Breast-Related Symptom Questionnaire) at 1 week and 1 day before surgery and at 1, 6, and 12 months after surgery. RESULTS: For the 52 patients in the study, mean scores for all quality-of-life instruments increased from the preoperative assessments to the postoperative assessments. The mean quality-adjusted life years gained per patient because of the surgery was 0.12 during the 1-year follow-up period. There was a positive relationship (p < 0.001) between breast resection weight and body mass index. However, body mass index and tissue resection weight were not significantly associated with Health Utilities Index Mark 3 change scores (p > 0.05). CONCLUSIONS: Patients who undergo breast reduction experience an important improvement in health-related quality of life according to four established measures. The improvement is most noticeable between 1 day before surgery and 1 month after surgery, after which it stabilizes for up to 1 year. The health-related quality-of-life effect of the surgery translates into an expected lifetime gain of 5.32 quality-adjusted life years, which is equivalent to each patient living an additional 5.32 years in perfect health. The authors conclude that there is no justification for the ongoing restriction or denials of third-party payments based on body mass index.


Assuntos
Mama/patologia , Mamoplastia/métodos , Qualidade de Vida , Adulto , Idoso , Índice de Massa Corporal , Mama/cirurgia , Estudos de Coortes , Feminino , Seguimentos , Humanos , Hipertrofia/patologia , Hipertrofia/cirurgia , Pessoa de Meia-Idade , Medição da Dor , Satisfação do Paciente , Complicações Pós-Operatórias , Probabilidade , Estudos Prospectivos , Resultado do Tratamento , Cicatrização/fisiologia
12.
J Clin Oncol ; 24(22): 3636-43, 2006 Aug 01.
Artigo em Inglês | MEDLINE | ID: mdl-16877731

RESUMO

PURPOSE: The intent of this study was to determine whether baseline measures of functional capacity and performance could be used to predict survival in adults following the diagnosis of brain tumors. PATIENTS AND METHODS: Comprehensive health status and health-related quality of life (HRQL) were measured using the Health Utilities Index (HUI; McMaster University, Hamilton, Canada) system by a self-assessment questionnaire in a survey of 100 consecutive patients. The Karnofsky Performance Score (KPS) and Folstein's Mini-Mental State Examination (MMSE) scores were measured by a physician blinded to the HUI results. The patients were observed for up to 5 years to recorded dates of death. RESULTS: An HUI questionnaire was completed for 93% of the patients and 69% died within 5 years of assessment. The HUI revealed a burden of morbidity and complexity of disability that far exceeded that reported for the general population. KPS and MMSE correlated strongly with each other (r = 0.52; P < .001). A decrease of 0.1 units in HUI Mark 2 (HUI2) self-care single-attribute utility score was associated with an increased hazard of death of 30% (P = .023) for patients with low-grade tumors (n=25). For patients with high-grade tumors (n=56), a 10 unit decrease in the KPS, a 5 unit decrease in MMSE, and a 0.1 decrease in HUI Mark 3 (HUI3) speech and dexterity single-attribute scores were associated with an increased hazard of death of 20% (P = .022), 26% (P = .015), 36% (P = .021), and 18% (P = .035), respectively. CONCLUSION: Scores derived from the measurement of HRQL following diagnosis can predict survival in adults with brain tumors.


Assuntos
Neoplasias Encefálicas/diagnóstico , Neoplasias Encefálicas/terapia , Nível de Saúde , Qualidade de Vida , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias Encefálicas/radioterapia , Neoplasias Encefálicas/cirurgia , Feminino , Indicadores Básicos de Saúde , Humanos , Avaliação de Estado de Karnofsky , Masculino , Pessoa de Meia-Idade , Valor Preditivo dos Testes , Modelos de Riscos Proporcionais , Estudos Prospectivos , Inquéritos e Questionários , Análise de Sobrevida
13.
J Pediatr Hematol Oncol ; 28(6): 331-41, 2006 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-16794499

RESUMO

Cancer is the commonest cause of disease-related death in children over 5 years of age in various parts of Latin America, but the survival rates are improving. This study assessed the health status and health-related quality of life (HRQL) of more than 200 survivors of cancer in childhood in the countries of a Central American consortium devoted to pediatric hematology-oncology. Patients' self-reports and parental proxy assessments were collected using interviewer-administered Spanish-language questionnaires, and physicians provided assessments using self-complete questionnaires, based on the complementary Health Utilities Index (HUI) Mark 2 (HUI2) and Mark 3 (HUI3) health status classification systems. Inter-rater agreement, measured by intra-class correlation (ICC), was fair to moderate (0.340.60) for all 3 pairs of assessors for readily assessable attributes: HUI2 sensation, HUI3 vision, HUI3 hearing, and HUI3 ambulation. Less than 40% of the patients reported being in perfect health. More than 20% reported being in health states with HRQL scores corresponding to moderate or severe disability, notably in the attributes of emotion and cognition. The results reflect a common profile in survivors of cancer in childhood, including those from industrialized societies. This study illustrates the feasibility of collecting reliable and valid information on HRQL in the developing country context, raising the prospect that such information could be used to influence clinical practice.


Assuntos
Indicadores Básicos de Saúde , Entrevistas como Assunto , Neoplasias/psicologia , Qualidade de Vida , Inquéritos e Questionários , Adolescente , América Central , Criança , Pré-Escolar , Intervalo Livre de Doença , Feminino , Humanos , Masculino , Neoplasias/mortalidade , Neoplasias/fisiopatologia , Taxa de Sobrevida
14.
J Adolesc Health ; 38(5): 504-10, 2006 May.
Artigo em Inglês | MEDLINE | ID: mdl-16635760

RESUMO

PURPOSE: Adolescent survivors of cancer in childhood face particular challenges due to their maturational trajectory, including psychosocial adjustments, self-help skills, intellectual functioning and socialization. To better understand these, we assessed the health status and health-related quality of life (HRQL) in a 20-year cohort of such survivors in a single institution. METHODS: Health status and HRQL were measured with a self-complete questionnaire from the Health Utilities Index (HUI) family of multi-attribute, preference-based instruments that provide utility scores for single attributes and overall HRQL. RESULTS: Eighty-four (42 males, 42 females) of 129 eligible subjects (65%) participated. More than 80% of the respondents reported some form of morbidity. Overall HRQL utility scores were lower for both the males and females than for corresponding members of the Canadian general population. Female survivors self-reported a significantly greater burden of morbidity (mean overall HUI2/HUI3 scores: .83/.73 vs. .90/.84 for males, p < .02), which was most evident in the attributes of emotion and cognition. CONCLUSIONS: The majority of adolescent survivors of cancer in childhood carry a morbidity burden into their teen and young adult years. These findings may guide the support required by this population.


Assuntos
Nível de Saúde , Neoplasias , Qualidade de Vida , Adolescente , Adulto , Criança , Feminino , Seguimentos , Humanos , Masculino , Fatores Sexuais , Sobreviventes
15.
Pediatr Blood Cancer ; 46(3): 357-62, 2006 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-16035080

RESUMO

BACKGROUND: Osteopenia has been reported in children surviving acute lymphoblastic leukemia and brain tumors, apparently as a consequence of therapy. It has been suggested that cranial irradiation may play a role in the development of this complication. In order to explore that possibility, we examined survivors of brain tumors treated with and without radiation in childhood to investigate associations between radiation, osteopenia, physical activity, health status and overall health-related quality of life (HRQL). PROCEDURE: Subjects were survivors of posterior fossa tumors (astrocytoma or medulloblastoma) or optic glioma, < 18 years of age at diagnosis and > 1 year off treatment. Measurements of growth velocity, body composition, bone densitometry, physical activity and HRQL were undertaken. RESULTS: Twenty-five (62.5%) of the 40 eligible patients participated in the study. Of the 25 patients, 12 (48%) received radiation therapy (R group) while 13 received no radiation (NR group). Growth hormone (GH) deficiency had been detected in three subjects, one had completed GH therapy while two were still on hormone replacement. The prevalence of osteopenia was 44% in the entire group, and 67% versus 27% in the R and NR groups. Florid osteoporosis was present in 20% of the entire group, more than 40% of the R group but none of the NR group. A significant correlation (P < 0.01) was observed between overall HRQL and Z scores of bone mineral density (BMD) of the lumbar spine. Pain and ambulation/mobility utility scores correlated significantly (P < 0.05) with BMD, while levels of physical activity correlated (P < 0.05) with overall HRQL utility scores. CONCLUSIONS: This pilot study demonstrates that in survivors of brain tumors treated in childhood, radiation therapy is associated with significant loss of bone mineral. Among these survivors, HRQL is less, pain is more severe and ambulation is more restricted in those with low BMD scores. The reduction in HRQL is reflected in diminished physical activity. A larger multi-center study is needed to confirm these results.


Assuntos
Doenças Ósseas Metabólicas/tratamento farmacológico , Neoplasias Encefálicas , Hormônio do Crescimento/uso terapêutico , Terapia de Reposição Hormonal , Atividade Motora , Qualidade de Vida , Adolescente , Índice de Massa Corporal , Densidade Óssea , Doenças Ósseas Metabólicas/etiologia , Doenças Ósseas Metabólicas/mortalidade , Neoplasias Encefálicas/complicações , Neoplasias Encefálicas/mortalidade , Neoplasias Encefálicas/radioterapia , Criança , Pré-Escolar , Irradiação Craniana/efeitos adversos , Feminino , Hormônio do Crescimento/deficiência , Humanos , Região Lombossacral , Masculino , Leucemia-Linfoma Linfoblástico de Células Precursoras/complicações , Leucemia-Linfoma Linfoblástico de Células Precursoras/mortalidade , Leucemia-Linfoma Linfoblástico de Células Precursoras/radioterapia , Prevalência
16.
Health Qual Life Outcomes ; 3: 44, 2005 Jul 22.
Artigo em Inglês | MEDLINE | ID: mdl-16042775

RESUMO

BACKGROUND: Breast hypertrophy is associated with clinically important morbidity. A prospective study was conducted to assess the change in health-related quality of life (HRQL) following breast reduction mammoplasty. This paper describes the measurement properties of each of the HRQL questionnaires used. METHODS: The reliability, responsiveness, and the construct validity of each HRQL instrument (the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) and the Breast Reduction Assessment Value and Outcomes (BRAVO) instruments) were assessed. The BRAVO instruments are a set of separate instruments including the Short Form-36 (SF-36), the Multidimensional Body Self Relations Questionnaire Appearance Assessment (MBSRQ-AS), and the Breast Related Symptoms Questionnaire (BRSQ). RESULTS: The HUI2, the HUI3, the MBSRQ-AS, and the breast severity symptom (BSS) score from the BRSQ all demonstrated good test-retest reliability. The SF-36 physical component summary, the MBSRQ-AS, and the BSS score demonstrated high responsiveness. The SF-36 mental component summary and the HUI3 had a moderate effect size and the HUI2 had a small effect size. All of the changes in scales are correlated in the same direction except for the SF-36 physical component summary and the SF-36 mental component summary. CONCLUSION: All four instruments were found to be reliable and responsive. These instruments can be used in similar clinical settings to evaluate the change in patients' HRQL.


Assuntos
Doenças Mamárias/cirurgia , Mama/patologia , Mamoplastia/psicologia , Psicometria/instrumentação , Perfil de Impacto da Doença , Inquéritos e Questionários , Adulto , Idoso , Algoritmos , Mama/cirurgia , Doenças Mamárias/patologia , Doenças Mamárias/psicologia , Feminino , Humanos , Hipertrofia/cirurgia , Mamoplastia/reabilitação , Pessoa de Meia-Idade , Estudos Prospectivos , Qualidade de Vida , Anos de Vida Ajustados por Qualidade de Vida , Análise de Regressão , Resultado do Tratamento
17.
Qual Life Res ; 14(5): 1407-12, 2005 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-16047515

RESUMO

INTRODUCTION: There are few publications reporting health-related quality of life (HRQL) in developing nations. Most instruments measuring HRQL have been developed in English-speaking countries. These instruments need to be culturally adapted for use in non-English-speaking countries. The HUI2 and HUI3 are generic, preference-based systems for describing health status and HRQL. Developed in Canada, the systems have been translated into more than a dozen languages and used worldwide in hundreds of studies of clinical and general populations. METHODS: The Brazilian-Portuguese translation of the HUI systems was supervised by senior HUInc staff having experience with both the HUI systems and translations. The process included two independent forward translations of the multi-attribute health status classification systems and related questionnaires, consensus between translators on a forward translation, back-translation by two independent translators of the forward translation, and review of the back-translations by original developers of the HUI. The final questionnaires were tested by surveying a sample of convenience of 50 patients recruited at the Centro de Tratamento e Pesquisa-Hospital do Cancer in São Paulo, Brazil. RESULTS: Fifty patients were enrolled in the study. No assessor, patient or nurse or physician, reported problems answering the HUI questionnaires. No significant differences were found in mean overall HUI2 or HUI3 utility scores among types of assessors. Variability in scores are similar to those from other studies in Latin America and Canada. CONCLUSION: Test results provide preliminary evidence that the Brazilian-Portuguese translation is acceptable, understandable, reliable and valid for assessing health-status and HRQL among survivors of cancer in childhood in Brazil.


Assuntos
Cultura , Neoplasias/fisiopatologia , Psicometria/instrumentação , Qualidade de Vida , Perfil de Impacto da Doença , Inquéritos e Questionários , Sobreviventes/psicologia , Adulto , Brasil , Criança , Feminino , Humanos , Masculino , Neoplasias/etnologia , Neoplasias/terapia , Anos de Vida Ajustados por Qualidade de Vida , Tradução
18.
Health Qual Life Outcomes ; 3: 3, 2005 Jan 12.
Artigo em Inglês | MEDLINE | ID: mdl-15647118

RESUMO

The objectives of this report are to review the assessment of patient-focused outcomes in pediatric orthopedic surgery, to describe a framework for identifying appropriate sets of measures, and to illustrate an application of the framework to a challenging orthopedic problem.A detailed framework of study design and measurement factors is described. The factors are important for selecting appropriate instruments to measure health status and health-related quality of life (HRQL) in a particular context. A study to evaluate treatment alternatives for patients with neurofibromatosis type 1 and congenital tibial dysplasia (NF1-CTD) provides a rich illustration of the application of the framework. The application involves great variability in the instrument selection factors. Furthermore, these patients and their supportive caregivers face numerous complex health challenges with long-term implications for HRQL. Detailed summaries of important generic preference-based multi-attribute measurement systems, pediatric health profile instruments, and pediatric orthopedic-specific instruments are presented. Age-appropriate generic and specific measures are identified for study of NF1-CTD patients. Selected measures include the Activities Scale for Children, Gillette Functional Assessment Questionnaire Walking Scale, Health Utilities Index, and Pediatric Inventory of Quality of Life. Reliable and valid measures for application to pediatric orthopedics are available. There are important differences among measures. The selected measures complement each other. The framework in this report provides a guide for selecting appropriate measures. Application of appropriate sets of measures will enhance the ability to describe the morbidity of pediatric orthopedic patients and to assess the effectiveness of alternative clinical interventions. The framework for measurement of health status and HRQL from a patient perspective has relevance to many other areas of orthopedic practice.


Assuntos
Displasia Fibrosa Óssea/cirurgia , Neurofibromatose 1/cirurgia , Procedimentos Ortopédicos/reabilitação , Avaliação de Resultados em Cuidados de Saúde/métodos , Psicometria/instrumentação , Qualidade de Vida , Perfil de Impacto da Doença , Inquéritos e Questionários , Atividades Cotidianas , Adolescente , Criança , Pré-Escolar , Análise Discriminante , Estudos de Viabilidade , Displasia Fibrosa Óssea/congênito , Humanos , Lactente , Procedimentos Ortopédicos/métodos , Pais/psicologia , Assistência Centrada no Paciente , Procurador , Anos de Vida Ajustados por Qualidade de Vida
19.
Pediatr Blood Cancer ; 43(3): 215-23, 2004 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-15266404

RESUMO

Measures of health-related quality of life (HRQL) assess those areas of a patient's functioning that are affected by their cancer and its therapy. Although HRQL measures are integrated frequently into studies of survivors of childhood cancer, their use in the assessment of children receiving therapy has been limited by several methodological challenges. These arise from issues specific to measuring HRQL in young children, who comprise a large proportion of the pediatric oncology population, and from issues associated with assessing HRQL during therapy, when the patient's health status is in constant flux. This study summarizes the commonly used HRQL measures, and examines factors that impact their broad application. These include the influence of developmental changes on the content and format of HRQL measures, the role of proxy assessors, the important characteristics of measurement tools used to assess patients receiving active therapy, and the issues related to the ideal timing of serial HRQL assessments in prospective trials.


Assuntos
Neoplasias/terapia , Qualidade de Vida , Criança , Desenvolvimento Infantil , Humanos , Pesquisa/tendências
20.
Eur J Cancer ; 40(9): 1335-45, 2004 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-15177493

RESUMO

Treatment of cancer in childhood is an expensive undertaking for the health-care system and for the affected families. As there is a substantial burden of treatment-related morbidity, it is important to determine whether the effects of treatment are worth these monetary costs, especially from a societal perspective. Economic evaluation affords a comparison of the costs and consequences (effects) of relevant therapeutic alternatives. Preference-based measures of health-related quality of life are particularly useful for assessing the effects of treatment, for these tools integrate mortality and morbidity. These measures provide utility scores that can be used as weights on survival data to compute quality-adjusted life years (QALYs). Costs are incurred both within and outside of the health-care system. The former should include those in front-line patient care departments (e.g. nursing); the pro-rated share of the expenses of service departments (e.g. materials management) to those in the front line; and the fully allocated costs for capital invested in lands, building and equipment. The latter are costs borne by families that are both out-of-pocket (e.g. for over-the-counter drugs) as well as related to time spent in providing care, which may involve foregone income. Costs and consequences should be subject to discounting; a process for converting those items incurred in the future into contemporary equivalents. Economic evaluation provides estimates of incremental discounted costs per discounted QALY gained. By almost any interpretative standard this appears attractive with respect to cancer in childhood. Examples are provided with the encouragement that economic evaluation be undertaken in more clinical trials in paediatric oncology.


Assuntos
Serviços de Saúde da Criança/economia , Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde , Neoplasias/economia , Criança , Análise Custo-Benefício , Custos e Análise de Custo , Humanos , Neoplasias/terapia , Anos de Vida Ajustados por Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Transplante de Células-Tronco/economia , Resultado do Tratamento
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA