Evaluation of a patient information website for childhood cancer survivors.

PURPOSE: Childhood cancer survivors (CCS) are in need of specialized information about late effects of treatment. In the current study, we assessed the perceived usability and satisfaction with the content of a national website with information on late effects and analyzed possible determinants related to website usability and content satisfaction. METHODS: CCS and their parents were contacted through our local follow-up program and via online media to complete an online questionnaire regarding their baseline characteristics, medical decision style, and the usability and content of the website. Usability was evaluated using the System Usability Scale (SUS), a validated questionnaire resulting in a score from 0 to 100. For the content rating, we constructed a six-item scale resulting in a score from 1 to 5 (Cronbach's α, 0.83). Comments were analyzed qualitatively. RESULTS: Fifty-five survivors and forty-three parents of survivors completed the questionnaire. Median age of respondents was 41 years (range, 17-58). Respondents rated the website's usability with a mean SUS score of 72.5 (95 % CI, 69.2-74.9). The mean content rating was 3.7 (95 % CI, 3.5-3.8). No determinants were significantly related to the perceived usability or content satisfaction in multivariate analyses. Qualitative analysis revealed respondents' preference for more detailed and even scientific information on late effects. CONCLUSION: Respondents were satisfied with the usability and the contents of a website that targeted at their information needs. As knowledge about late effects is still limited among survivors, a website can be a valuable resource to improve their knowledge, promote healthy behavior, and in the end, improve their quality of life.

[Care for survivors of childhood cancer in the Netherlands]. / Zorg voor overlevenden van kinderkanker in Nederland.

Survival of childhood cancer has improved resulting in an increasing number of survivors who are at high risk of developing treatment-related health problems. The authors emphasize the need for specialized care for survivors of childhood cancer by describing three patients who all developed late effects of treatment. The first patient, a 32-year-old female, who had several late effects caused by treatment for nephroblastoma; the second a 39-year-old female, who developed breast cancer after thoracic irradiation for metastatic nephroblastoma; the third a 45-year-old female diagnosed with a meningioma caused by cranial irradiation for acute lymphoblastic leukaemia. In the Netherlands medical care for survivors is clustered at special outpatient clinics (in Dutch: Langetermijneffecten na kinderkanker (Long-term effects after childhood cancer; LATER)-outpatient clinics). In 2010 a guideline was published with recommendations for optimal follow-up and care for survivors of childhood cancer.