RESUMO
BACKGROUND: The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group (QLG) has developed computerised adaptive tests (CATs) for the 14 functional and symptom domains of the EORTC QLQ-C30 quality of life questionnaire. This is expected to optimise measurement precision, relevance to patients and flexibility. Here, we present the first international validation of the EORTC CAT Core. METHODS: A heterogeneous sample of 699 cancer patients scheduled for chemotherapy and/or radiotherapy was recruited across seven European countries. The EORTC CAT Core and all QLQ-C30 items were administered to participants before and after initiating treatment. Correlations between CAT and QLQ-C30 scores and floor/ceiling effects were calculated. Using several grouping variables, relative validity (cross-sectional known groups difference), responsiveness (changes over time) and relative sample size requirements of the CAT compared to the QLQ-C30 were estimated. RESULTS: Correlations of the CAT and QLQ-C30 ranged from 0.81 to 0.93 across domains. The mean relative reduction in floor and ceiling effects using the CAT was 42% (range 3-99%). Analyses of known groups validity and responsiveness indicated that, across domains, mean sample size requirements for the CAT were 72% and 70%, respectively, of those using the QLQ-C30. CONCLUSIONS: The EORTC CAT Core measures the same domains as the QLQ-C30 with reduced floor/ceiling effects. The CAT generally facilitated the use of smaller samples (about 30% smaller on average) without loss of power compared to the QLQ-C30. Based on this study, the EORTC QLG will release the EORTC CAT Core for general use.
Assuntos
Neoplasias/psicologia , Psicometria/métodos , Qualidade de Vida/psicologia , Adulto , Idoso , Algoritmos , Computadores , Estudos Transversais , Europa (Continente) , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/diagnóstico , Tamanho da Amostra , Inquéritos e QuestionáriosRESUMO
Patient education and empowerment (PEE) is aimed at improving competence of patients during their clinical path and enabling healthcare providers with specific communication strategies. We investigated the interest of Italian Cancer Research & Care Centers (CRCI) users (patients and caregivers) in being involved in PEE activities. An anonymous questionnaire addressed to users was distributed between June 2013 and February 2014. The questionnaire gathered information on the following: health-related topics; 13 different PEE initiatives/modalities of learning already active at CRCI; personal demographic data; the willingness to be more involved in the organization of health services provided and in which context; and five preferred info-educational activities. Frequency distribution and chi-square analysis were computed. Statistical significance (p value) was set at < 0.05. A total of 875 (29%) users responded to the 3000 distributed questionnaires. The first three priorities of interest were "early diagnosis" (18%), "prevention" (17%), and "diagnosis explanation" (13%). The first three priorities on informational activity were as follows: "classes on cancer-related topics with healthcare professionals" (28%); "cancer information service" (22%); "drug information point" (7%). Forty-nine percent of the respondents stated that they would like to be involved in the organization of PEE activities, particularly caregivers and users older than 55 years of age. The preferred educational activities were "classes on cancer-related topics with healthcare professionals" and "cancer information service" on a face-to-face modality. Patients were more interested than caregivers in "prevention." The extension of PEE programs to all CRCI users into routine care will be the next step of the present research.
Assuntos
Cuidadores/psicologia , Comportamento de Busca de Informação , Educação de Pacientes como Assunto/métodos , Feminino , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The aim of this study was to assess the psychometric characteristics of four Health Literacy (HL) measurement tools, viz. Newest Vital Sign (NVS), Short Test of Functional Health Literacy in Adults (STOFHLA), Single Item Literacy Screener (SILS) and Single question on Self-rated Reading Ability (SrRA) among Italian oncology patients. METHODS: The original version of the tools were translated from the English language into Italian using a standard forward-backward procedure and according to internationally recognized good practices. Their internal consistency (reliability) and validity (construct, convergent and discriminative) were tested in a sample of 245 consecutive cancer patients recruited from seven Italian health care centers. RESULTS: The internal consistency of the STOFHLA-I was Chronbach's α=0.96 and that of NVS-I was α=0.74. The STOFHLA-I, NVS-I, SILS-I and SrRA-I scores were in a good relative correlation and in all tools the discriminative known-group validity was confirmed. The reliability and validity values were similar to those obtained from other cultural context studies. CONCLUSION: The psychometric characteristics of the Italian version of NVS, STHOFLA, SILS and SrRA were found to be good, with satisfactory reliability and validity. This indicates that they could be used as a screening tool in Italian patients. Moreover, the use of the same cross-cultural tools, validated in different languages, is essential for implementing multicenter studies to measure and compare the functional HL levels across countries.
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Letramento em Saúde , Neoplasias , Psicometria , Adolescente , Adulto , Idoso , Feminino , Nível de Saúde , Humanos , Itália , Idioma , Masculino , Oncologia , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Traduções , Adulto JovemRESUMO
BACKGROUND: We validated the new European Organisation for Research and Treatment of Cancer Quality of Life Head and Neck Module (EORTC QLQ-HN43). METHODS: We enrolled 812 patients with head and neck cancer from 18 countries. Group 1 completed the questionnaire before therapy, and 3 and 6 months later. In group 2 (survivors), we determined test-retest reliability using intraclass correlation coefficients (ICC). Internal consistency was assessed using Cronbach's Alpha, the scale structure with confirmatory factor analysis, and discriminant validity with known-group comparisons. RESULTS: Cronbach's alpha was >0.70 in 10 of the 12 multi-item scales. All standardized factor loadings exceeded 0.40. The ICC was >0.70 in all but two scales. Differences in scale scores between known-groups were >10 points in 17 of the 19 scales. Sensitivity to change was found to be sufficient in 18 scales. CONCLUSIONS: Evidence supports the reliability and validity of the EORTC QLQ-HN43 as a measure of quality of life.
Assuntos
Neoplasias de Cabeça e Pescoço/psicologia , Qualidade de Vida , Inquéritos e Questionários , Idoso , Idoso de 80 Anos ou mais , Terapia Combinada , Europa (Continente) , Feminino , Neoplasias de Cabeça e Pescoço/complicações , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes , Sensibilidade e EspecificidadeRESUMO
CONTEXT: Intravenous fluid administration with peripherally inserted central venous catheters (PICCs) and midline catheters in palliative care. OBJECTIVES: To evaluate distress and pain perceived by patients during the positioning of a PICC or midline catheter, both in the home and hospice settings. METHODS: This was a prospective observational study performed by the Palliative Care Network of Pordenone. In addition to evaluating distress and pain, we monitored patient quality of life and the devices used. Quality of life was measured with the European Organization for Research and Treatment of Cancer-Core 15-Palliative scale. RESULTS: From May 2012 to July 2013, 48 patients were enrolled in the study. The level of distress during the procedure was null or very low in 95.8% of the patients and completely absent after one week. Pain during insertion was null or very little in 93.8% of the patients and zero after one week in 98% of the patients. Quality of life was significantly improved after one week for certain specific parameters and also globally. The number of catheter days monitored was 3097. The weekly monitoring of the devices revealed a series of minor complications. Only two catheters were removed for serious complications. CONCLUSION: Our results showed a low impact on pain and distress, a low level of local and systemic complications and a favorable impact on patients' quality of life. However, other studies are necessary to evaluate the cost-effectiveness of the use of these devices and their role in palliative care.
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Cateteres Venosos Centrais , Percepção da Dor , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico/etiologia , Ultrassonografia de Intervenção/psicologia , Idoso , Idoso de 80 Anos ou mais , Cateteres Venosos Centrais/efeitos adversos , Feminino , Seguimentos , Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida/métodos , Cuidados Paliativos na Terminalidade da Vida/psicologia , Humanos , Itália , Masculino , Cuidados Paliativos/métodos , Estudos Prospectivos , Resultado do Tratamento , Ultrassonografia de Intervenção/efeitos adversos , Ultrassonografia de Intervenção/métodosRESUMO
BACKGROUND: The objective of this study was to pilot test an updated version of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Head and Neck Module (EORTC QLQ-H&N60). METHODS: Patients with head and neck cancer were asked to complete a list of 60 head and neck cancer-specific items comprising the updated EORTC head and neck module and the core questionnaire EORTC QLQ-C30. Debriefing interviews were conducted to identify any irrelevant items and confusing or upsetting wording. RESULTS: Interviews were performed with 330 patients from 17 countries, representing different head and neck cancer sites and treatments. Forty-one of the 60 items were retained according to the predefined EORTC criteria for module development, for another 2 items the wording was refined, and 17 items were removed. CONCLUSION: The preliminary EORTC QLQ-H&N43 can now be used in academic research. Psychometrics will be tested in a larger field study.
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Carcinoma de Células Escamosas/psicologia , Carcinoma de Células Escamosas/terapia , Neoplasias de Cabeça e Pescoço/psicologia , Neoplasias de Cabeça e Pescoço/terapia , Qualidade de Vida , Adaptação Psicológica , Fatores Etários , Idoso , Carcinoma de Células Escamosas/patologia , Terapia Combinada , Europa (Continente) , Feminino , Neoplasias de Cabeça e Pescoço/diagnóstico , Indicadores Básicos de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Medição de Risco , Fatores Sexuais , Perfil de Impacto da Doença , Sociedades Médicas , Estresse Psicológico , Inquéritos e QuestionáriosRESUMO
The present authors have developed a model for assessing caregiving-related problems and needs, the Economic, Social, Psychological and Educational Requirements Table (ESPERT). The model was based on an analysis of the international literature concerning caregiving-related problems, and current specific European and Italian legislation, as well as the authors' own research results (which also permitted them to design a specific instrument for the general assessment of caregivers). This paper describes the socio-psychological and socio-political background prompting the development of the model, the general instrument for the assessment of caregivers and an example of its use in a sample of caregivers of cancer patients. In the example study, 80 caregivers of cancer patients were asked to complete questionnaires evaluating their state and trait anxiety, depressive symptoms, personality traits, and specifically, their neuroticism or emotional instability, caregiving strain and the degree of satisfaction with their lives. In addition to the specific information obtained about this group of caregivers, the present results show that the completion of the ESPERT makes it possible to identify the proportion of subjects at economic, social and emotional risk, and to decide rapidly what kind of resources/interventions can be implemented, bearing in mind the most balanced cost-benefit ratio.
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Adaptação Psicológica , Cuidadores/psicologia , Depressão/psicologia , Avaliação das Necessidades/normas , Estresse Psicológico/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Análise de Variância , Efeitos Psicossociais da Doença , Feminino , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Índice de Gravidade de Doença , Apoio Social , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The objective of this study was to identify relevant quality of life (QOL) issues in patients with head and neck cancer receiving multimodal and/or targeted therapies. METHODS: The literature was searched for QOL issues reported after multimodal and/or targeted therapies resulting in a list of potentially relevant issues. These were discussed within a multiprofessional expert group, revised, and subsequently rated for relevance by patients and health care providers. RESULTS: Twenty-seven issues were extracted that are not covered by the current version of the European Organization for Research and Treatment of Cancer (EORTC) questionnaires. Interviews (96 health care providers from 13 countries, 137 patients from 8 countries) revealed that 26 of these issues were relevant for patients with head and neck cancer. CONCLUSIONS: Studies investigating targeted and/or multimodal therapy should consider that some QOL issues specific to these treatments are not covered by the current version of the EORTC instruments. Consequently, the EORTC head and neck cancer module is currently in revision.