Development and psychometric evaluation of 2 measures of perceived needs: 1 for young persons with cancer; 1 for parents

越来越多的人认识到，有必要制定措施，使病人能够反映他们的需要，以便卫生保健系统能够有效地作出反应。癌症患者代表了一些更令人心酸和需要帮助的群体。在这一患者队列中，患有癌症的年轻人代表了一个潜在的、可以理解的、范围广泛的高度未得到满足的需求的群体。人们承认，有癌症孩子的父母所承受的压力和要求是相当大的。尽管制定了确定各种癌症患者未得到满足的需求的措施，包括晚期癌症、无法治愈的癌症、乳腺癌和宫颈癌，但迄今还没有制定准确衡量罹患癌症的年轻人的父母未得到满足的需求以及罹患癌症的年轻人本身未得到满足的需求的工作。这项研究将制定这样一项措施，作为确定最具成本效益的方法来解决癌症儿童及其家庭未得到满足的需求的第一步。这些措施将在临床上得到应用，能够准确地估计未得到满足的需求的流行程度，并在研究中应用，为评估干预措施的有效性提供可靠和有效的结果衡量标准。

It is increasingly acknowledged that there is a need to develop measures which allow patients to reflect their needs, so that the health-care system can respond effectively. Cancer patients represent some of the more poignant and in need groups. Of this patient cohort, young persons with cancer represent a group with potentially, and understandably, a wide range of high unmet needs. The stress and demands imposed upon parents who have children with cancer is acknowledged as being considerable. Despite the development of measures to identify unmet needs of various cancer patients including advanced, incurable cancer, breast cancer and cervical cancer, there has been no work to date on developing an accurate measure of unmet needs among parents of young persons who have cancer, as well as the unmet needs of young persons themselves who have cancer. This study will develop such a measure, as a first step in identifying the most cost-effective ways to address the unmet needs of children with cancer and their families. These measures will have a clinical application, in enabling accurate estimates of the prevalence of unmet needs, and a research application, in providing reliable and valid outcome measures for evaluating the effectiveness of interventions.