Patient Concerns Inventory for head and neck cancer: Brazilian cultural adaptation.

OBJECTIVE:: The purpose of this study was to translate, culturally validate and evaluate the Patients Concerns Inventory - Head and Neck (PCI-H&N) in a consecutive series of Brazilian patients. METHOD:: This study included adult patients treated for upper aerodigestive tract (UADT) cancer. The translation and cultural adaptation of the PCI-H&N followed internationally accepted guidelines and included a pretest sample of patients that completed the first Brazilian Portuguese version of the PCI. Use, feasibility and acceptability of the PCI were tested subsequently in a consecutive series of UADT cancer patients that completed the final Brazilian Portuguese version of the PCI and a Brazilian Portuguese version of the University of Washington Quality of Life Questionnaire (UW-QOL). Associations between physical and socio-emotional composite scores from the UW-QOL and the PCI were analyzed. RESULTS:: Twenty (20) patients participated in the pretest survey (translation and cultural adaptation process), and 84 patients were analyzed in the cultural validation study. Issues most selected were: fear of cancer returning, dry mouth, chewing/eating, speech/voice/being understood, swallowing, dental health/teeth, anxiety, fatigue/tiredness, taste, and fear of adverse events. The three specialists most selected by the patients for further consultation were speech therapist, dentist and psychologist. Statistically significant relationships between PCI and UW-QOL were found. CONCLUSION:: The translation and cultural adaptation of the PCI into Brazilian Portuguese language was successful, and the results demonstrate its feasibility and usefulness, making this a valuable tool for use among the Brazilian head and neck cancer population.

Patient Concerns Inventory for head and neck cancer: Brazilian cultural adaptation / Inventário de Preocupações dos Pacientes com câncer de cabeça e pescoço: adaptação cultural brasileira

Summary Objective: The purpose of this study was to translate, culturally validate and evaluate the Patients Concerns Inventory - Head and Neck (PCI-H&N) in a consecutive series of Brazilian patients. Method: This study included adult patients treated for upper aerodigestive tract (UADT) cancer. The translation and cultural adaptation of the PCI-H&N followed internationally accepted guidelines and included a pretest sample of patients that completed the first Brazilian Portuguese version of the PCI. Use, feasibility and acceptability of the PCI were tested subsequently in a consecutive series of UADT cancer patients that completed the final Brazilian Portuguese version of the PCI and a Brazilian Portuguese version of the University of Washington Quality of Life Questionnaire (UW-QOL). Associations between physical and socio-emotional composite scores from the UW-QOL and the PCI were analyzed. Results: Twenty (20) patients participated in the pretest survey (translation and cultural adaptation process), and 84 patients were analyzed in the cultural validation study. Issues most selected were: fear of cancer returning, dry mouth, chewing/eating, speech/voice/being understood, swallowing, dental health/teeth, anxiety, fatigue/tiredness, taste, and fear of adverse events. The three specialists most selected by the patients for further consultation were speech therapist, dentist and psychologist. Statistically significant relationships between PCI and UW-QOL were found. Conclusion: The translation and cultural adaptation of the PCI into Brazilian Portuguese language was successful, and the results demonstrate its feasibility and usefulness, making this a valuable tool for use among the Brazilian head and neck cancer population.

Resumo Objetivo: O objetivo deste estudo foi traduzir, adaptar culturalmente e avaliar o Inventário de Preocupações dos Pacientes - Cabeça e Pescoço (IPP-CP) em uma série consecutiva de pacientes brasileiros. Método: Este estudo incluiu pacientes adultos tratados por câncer do trato aerodigestivo superior (TADS). A tradução e a adaptação cultural do IPP-CP seguiram diretrizes internacionalmente aceitas e incluíram uma amostra piloto de pacientes que completaram a primeira versão em português do IPP-CP. O uso, a viabilidade e a aceitabilidade do IPP-CP foram testados posteriormente, em uma série consecutiva de pacientes com câncer do TADS que completaram a versão final em português do PCI e uma versão em português do questionário de qualidade de vida da Universidade de Washington (UW-QOL). As associações entre os escores físicos e socioemocionais do UW-QOL e do IPP foram analisadas. Resultados: Vinte pacientes participaram da pesquisa piloto (processo de adaptação cultural e tradução), e 84 pacientes foram analisados no estudo de validação cultural. As questões mais selecionadas foram: medo de o câncer voltar, boca seca, mastigação/comer, fala/voz/ser compreendido, deglutição, saúde dental/dentes, ansiedade, fadiga/cansaço, paladar e medo de eventos adversos. Os três especialistas mais selecionados foram fonoaudiólogo, dentista e psicólogo. Relações estatisticamente significativas entre IPP e UW-QOL foram encontradas. Conclusão: A tradução e a adaptação cultural do IPP para o português foram bem-sucedidas, e os resultados demonstram a viabilidade e a utilidade da ferramenta, tornando-a valiosa para uso na população brasileira com câncer de CP.

Questionários para a avaliação de Qualidade de Vida em pacientes com câncer de cabeça e pescoço validados no Brasil / Questionnaires validated in the Brazilian population for evaluation of the Quality of Life in patients with head and neck cancer

A avaliação de qualidade de vida tornou-se uma importante ferramenta na avaliação do impacto da doença, saúde e tratamento. A identificação dos efeitos da doença e tratamento na vida dos pacientes pode resultar em mudanças nos procedimentos terapêuticos e de reabilitação e, conseqüentemente, pode auxiliar o médico e o paciente na decisão terapêutica. Nos últimos 15 anos, muitos instrumentos para avaliar a qualidade de vida específica para pacientes com câncer de cabeça e pescoço foram validados. Os questionários são multidimensionais, variando quanto ao número de questões globais divididas em domínios físico, sócio-familiar, funcional e emocional ou, ainda, em questões específicas relacionadas à aparência, dor, fala, mastigação, deglutição, paladar e saliva, entre outros. Os questionários são auto-aplicativos podendo ser ocasionalmente aplicados por entrevistadores treinados e refletem os efeitos da presença do tumor, do tratamento e a habilidade do paciente em lidar com as seqüelas após o tratamento. O objetivo deste estudo é apresentar e discutir os questionários de qualidade de vida específica para o câncer de cabeça e pescoço mais utilizados em estudos da área e validados na população brasileira.

Measuring quality of life is an important toll in the evaluation of the impact of the disease, health and treatment in a population. The identification and description of the effects due to the disease and treatment in the life of the patients may result in changes on the treatment planning and rehabilitation and so can assist both the physician and patient in deciding the treatment. In the last 15 years many questionnaires have been validated to evaluate the specific quality of life related to head and neck cancer. The questionnaires are multidimensional, evaluating the global and specific quality the life based on domains that include many aspects: physical, socio-familial, functional, emotional, and yet questions related to the treatment including appearance, pain, speech, mastication, swallowing, saliva among others. These questionnaires are mainly self-reported, it also may be done, occasionally, a trained interviewer, and reflect the effects of the disease, its treatment and the ability of the patient to copy with the disease and its sequels. The aim of this study is to present and discuss the quality of life questionnaires specific for head and neck cancer that are widely used and are validated in the Brazilian population.

Brazilian-Portuguese validation of the University of Washington Quality of Life Questionnaire for patients with head and neck cancer.

BACKGROUND: The University of Washington Quality of Life (UW-QOL) questionnaire is an English-language survey instrument used worldwide to assess the quality of life of patients with head and neck cancer. To be used in other cultures, such instruments require careful translation and psychometric validation in other languages. METHODS: The translation and cultural adaptation of the questionnaire were performed following accepted international guidelines. The psychometric validation was performed on a consecutive series of patients with at least 1 year of disease-free survival after treatment for squamous cell carcinoma of the upper aerodigestive tract, recruited from October 2004 to January 2005 from a tertiary cancer center hospital. Eligible subjects were invited to complete the Portuguese version of the UW-QOL questionnaire during routine clinical consultation and complete it again within 15 days. They also completed a validated Portuguese version of the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) and a questionnaire to evaluate anxiety and depression symptoms (Hospital Anxiety and Depression Scale [HADS]). RESULTS: A Portuguese version of the questionnaire was developed in iterative fashion. In the psychometric validation process, a total of 109 patients were analyzed. Reliability was excellent, including both internal consistency (Cronbach's alpha [alpha] of 0.744) and test retest reliability (intraclass correlation coefficient [ICC] of 0.882). Construct validity was supported by statistically significant relationships between the SF-36 and HAD questionnaires and the translated UW-QOL questionnaire. CONCLUSIONS: The Brazilian-Portuguese version of the UW-QOL questionnaire appears to be culturally appropriate and psychometrically valid. This version is a valuable tool to evaluate accurately the quality of life of Brazilian patients with head and neck cancer.

Socioeconomic effects of and risk factors for disability in long-term survivors of head and neck cancer.

OBJECTIVE: To evaluate the socioeconomic effect of and risk factors for work-related disability due to head and neck cancer and its treatment. DESIGN: Cross-sectional analysis of a consecutive series of patients. SETTING: Tertiary cancer center hospital. PATIENTS: Eligible patients had squamous cell carcinoma of the upper aerodigestive tract, were employed or had an active professional career at the time of initial diagnosis, and were disease free for at least 2 years at the time of interview. The survey instruments were a specific questionnaire to evaluate patient socioeconomic status and a Portuguese version of the University of Washington Quality of Life questionnaire. MAIN OUTCOME MEASURES: Descriptive analysis of the results and associations between clinical, social, and quality of life variables with work disability. RESULTS: A total of 301 patients were studied. There were 236 (78.4%) men (median age, 52 years). The tumor sites were the oral cavity in 158 (52.5%), oropharynx in 55 (18.3%), larynx in 78 (25.9%), and hypopharynx in 10 (3.3%). Most patients presented with advanced clinical disease and underwent surgical treatment initially. There were 36 (12.0%) illiterate patients, and only 23 (7.6%) patients had completed college. Ninety-nine patients (32.9%) became unable to work, and 126 (41.9%) reported a significant decrease in household income. Multivariate analysis showed that advanced clinical stage (P = .02), alcohol consumption (P = .02), and low educational level (P = .007) were associated independently with work disability. CONCLUSIONS: We observed a high rate of work-related disability that led to significant decrease in household income. Several clinical, social, and quality of life variables were associated with this degree of disability. These results could be used to better define who should undergo more intensive rehabilitation aiming to reduce work disability. If intensive rehabilitation is unsuccessful, these patients should receive more comprehensive social support.

Long-term quality-of-life evaluation after head and neck cancer treatment in a developing country.

OBJECTIVE: To evaluate the long-term quality of life of patients treated for head and neck cancer at a single institution in a developing country. DESIGN: Cross-sectional analysis of a consecutive series of patients. SETTING: Tertiary cancer center hospital in Brazil. PATIENTS: Eligible subjects included patients treated between 1974 and 1999 for head and neck carcinoma who had a minimum disease-free survival of 2 years and who completed a Portuguese version of the University of Washington Quality of Life (UW-QOL) questionnaire. MAIN OUTCOME MEASURES: Descriptive analyses of the results and comparisons of the scores for each UW-QOL domain, stratified by tumor site, were performed using nonparametric tests. RESULTS: Findings from 344 patients were analyzed. Of the study population, 140 (41%) had survived 2 to 5 years, 125 (36%) had survived 5 to 10 years, and 79 (23%) had survived more than 10 years since treatment. Primary tumor sites were in the oral cavity in 43.3% of cases, the oropharynx in 20.9%, the larynx in 32.0%, and the hypopharynx in 3.8%. In terms of treatment, 33.1% underwent surgery alone; 16.9%, radiotherapy alone; and 50% underwent combined treatment. Overall, 78.5% of the patients classified their own health as good or excellent. Stratified analysis showed that impairment in chewing and swallowing was more common in patients with oral and oropharyngeal tumors than in those with larynx and hypopharynx tumors, and speech impairment was more frequently related to patients with larynx and hypopharynx tumors than to those with oral and oropharynx tumors. In all tumor sites, the composite scores were significantly worse in advanced tumors than early stage tumors, but the use of combined treatment had the greatest negative impact on quality-of-life scores, after we adjusted for T and N stage with multivariable analyses (P<.001). CONCLUSIONS: The Portuguese version of the UW-QOL questionnaire was an effective tool to evaluate quality of life in a Brazilian population. Although many patients reported some limitations, most reported a good to excellent long-term quality of life.