Vrijmoeth Cis, Echteld Michael A, Assendelft Pim, Christians Milou, Festen Dederieke, van Schrojenstein Lantman-de Valk Henny, Vissers Kris, Groot Marieke
Intellectual Disabilities and Health, Department of Primary and Community Health Care, Radboudumc Nijmegen, Nijmegen, The Netherlands.
Advisium Apeldoorn, 's Heeren Loo, the Netherlands.
J Appl Res Intellect Disabil. 2018 Nov;31(6):1122-1132. doi: 10.1111/jar.12472. Epub 2018 Jul 1.
Timely identifying people with intellectual disabilities in need of palliative care is important. Therefore, we developed PALLI: a screening tool for deteriorating health, indicative of a limited life expectancy. Here, we aimed to describe development of PALLI and to explore its applicability.
We used a five-stage mixed-methods procedure to develop PALLI based on knowledge from practice. For exploring applicability, professionals caring for people with intellectual disabilities completed PALLI for 185 people with intellectual disabilities and provided information on applicability after 5-6 months.
The final version of PALLI included 39 questions relevant for people with intellectual disabilities. Applicability was adequate: Most professionals found PALLI relevant and reported no ambiguous questions. Added value of PALLI was reflecting on and becoming aware of the process of decline in health.
PALLI shows promising applicability and has potential as a tool for timely identifying people with intellectual disabilities who may benefit from palliative care.
及时识别需要姑息治疗的智障人士很重要。因此，我们开发了PALLI：一种用于筛查健康状况恶化、提示预期寿命有限的工具。在此，我们旨在描述PALLI的开发过程并探索其适用性。
我们采用五阶段混合方法程序，基于实践知识开发PALLI。为探索其适用性，照顾智障人士的专业人员为185名智障人士完成了PALLI，并在5至6个月后提供了有关适用性的信息。
PALLI的最终版本包含39个与智障人士相关的问题。适用性良好：大多数专业人员认为PALLI相关且未报告有歧义的问题。PALLI的附加值在于反思并意识到健康状况下降的过程。
PALLI显示出良好的适用性，有潜力作为及时识别可能从姑息治疗中受益的智障人士的工具。
