RÉSUMÉ
Context: Head-and-neck cancer (HNC) is a major health problem worldwide and even disproportionately bigger in India. Their diagnosis and treatment create severe impact on the quality of life (QOL). We chose to study such patients because we were already reporting these cancers to the Indian Council of Medical Research as part of project titled “Pattern of care and survival studies.” Aims: The aim of the study is to assess and compare QOL of H and N cancer patients before and after the completion of cancer-directed treatment (CDT). Settings and Design: The present study was a hospital-based study conducted in the tertiary care hospital of Jammu with longitudinal study design. Subjects and Methods: All newly diagnosed HNC patients registered with the Department of Radiotherapy and ENT on inpatient or outpatient basis were included over a period of 6 months. Each patient was followed for 4–6 weeks after the completion of CDT. QOL was assessed by the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 30 (QLQ C30) (general) and EORTC QLQ H and N-35 (specific) questionnaires. Statistical Analysis: Paired t-test was calculated to compare pre- and postmean scores. Pre- and post-Cronbach alpha reliability coefficient was also calculated. Results: The most frequent site was larynx followed by the oral cavity. Regarding both EORTC QLQ C-30 questionnaire and Global health status and EORTC H and N-35 specific questionnaires, the mean scores across all domains showed worsening of QoL from their baseline. The worsening was more severe in emotional function (functional scale), while physical, cognitive, and social functions were comparatively less affected. Pain, swallowing, speech, and mouth problems were most worsened. Conclusions: QoL showed worsening after CDT in all domains due to acute and subacute adverse effects of chemotherapy and radiotherapy in treatment course
RÉSUMÉ
Resumen La participación es un derecho humano que debe ser garantizado. No obstante, variadas restricciones físicas y sociales dificultan el involucramiento de las personas con condiciones neurológicas en su comunidad. Muchos países de Latinoamérica no cuentan con instrumentos validados que permitan analizar la participación de estos grupos. Por esta razón, a través de un diseño instrumental esta investigación evalúa las propiedades psicométricas del cuestionario de hábitos de vida (LIFE-H) en una muestra de 123 personas con parálisis cerebral entre 9 y 21 años (M = 14.14; DE=2.89). Se detectaron adecuados índices de consistencia interna. No se replicó la estructura de dos dimensiones mediante análisis factorial confirmatorio. Sin embargo, el análisis factorial exploratorio de los datos evidenció un factor general que explicó el 69.55 % de la varianza. Se concluye que el LIFE-H es un instrumento idóneo para el estudio de la participación como un constructo global en esta población.
Abstract Participation is a human right that must be guaranteed. However, various physical and social restrictions make it difficult for people with neurological conditions to participate in their community. Many Latin American countries do not have validated instruments to analyze the participation of these groups. The present investigation used an instrumental design to evaluate the psychometric properties of the Life Habits Assessment Questionnaire (LIFE-H) in a sample of 123 people with cerebral palsy between 9 and 21 years old (M = 14.14; DE=2.89). Adequate internal consistency indices were detected. The two-dimensional structure proposed by the authors was not replicated through confirmatory factor analysis. However, the exploratory factor analysis of the data evidenced a general factor that explained 69.55 % of the variance. It is concluded that LIFE-H is an ideal instrument for the study of participation as a global construct in this population.