RESUMEN
The objective of this study was to explore the usability of a bilingual (English and French) Internet-based self-management program for adolescents with cancer and their parents and refine the Internet program. A qualitative study design with semistructured, audio-taped interviews and observation was undertaken with 4 iterative cycles. A purposive sample of English-speaking and French-speaking adolescents with cancer and one of their parents/caregivers was recruited. Adolescents and parents provided similar feedback on how to improve the usability of the Internet program. Most changes to the website were completed after the initial cycles of English and French testing. Both groups also found information presented on the website to be appropriate, credible, and relevant to their experiences of going through cancer. Participants reported the program would have been extremely helpful when they were first diagnosed with cancer. Usability testing uncovered some issues that affected the usability of the website that led to refinements in the online program.
Asunto(s)
Cuidadores/educación , Instrucción por Computador/métodos , Internet , Neoplasias/terapia , Padres/educación , Educación del Paciente como Asunto/métodos , Autocuidado/métodos , Adolescente , Adulto , Canadá , Niño , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación CualitativaRESUMEN
OBJECTIVE: Studies of pain in systemic sclerosis (SSc) have used a variety of measures, including single-item measures and the 15-item short-form McGill Pain Questionnaire (MPQ-SF). The objective of our study was to compare the performance of the MPQ-SF to a single-item pain numerical rating scale (NRS) and determine whether the MPQ-SF effectively differentiates between sensory and affective components of pain in SSc. METHODS: A cross-sectional, multicenter study of 1091 patients from the Canadian Scleroderma Research Group Registry who completed the MPQ-SF and pain NRS. Correlations of MPQ-SF total scores and pain NRS scores with relevant outcome measures (disability, quality of life, depressive symptoms) were compared. To assess whether the MPQ-SF differentiated between sensory and affective factors, confirmatory factor analysis modeling was used, and correlations of sensory and affective factor scores with other outcome measures were compared. RESULTS: MPQ-SF total score and the pain NRS correlated similarly with other outcome measures, as did the sensory and affective scores. MPQ-SF sensory and affective factors were highly correlated (0.92), and a single-factor model fit as well as a 2-factor (sensory and affective) model. CONCLUSION: The substantial overlap between sensory and affective subscales of the MPQ-SF and the similarity of the MPQ-SF and NRS pain measures compared to other patient-reported outcomes suggest that the 15-item MPQ-SF does not provide tangible advantages compared to the single-item pain NRS. These findings support recommendations to use a single-item NRS pain measure in SSc as it is less burdensome to patients than the MPQ-SF.