de Wolf-Linder Susanne, Kramer Iris, Reisinger Margarete, Murtagh Fliss E M, Schubert Maria, Ramsenthaler Christina
Department of Health Sciences, Institute of Nursing, ZHAW Zurich University of Applied Sciences, Katharina-Sulzer Platz 9, CH-8400, Winterthur, Switzerland.
Wolfson Palliative Care Research Centre, Allam Medical Building, Hull York Medical School, University of Hull, Hull, HU6 7RX, UK.
BMC Geriatr. 2024 Dec 21;24(1):1030. doi: 10.1186/s12877-024-05608-8.
Dementia is a progressive and terminal illness. Symptoms are present for people with dementia across all stages, leading to poor quality of life and considerable carer burden. In acute and community care services, no holistic, person-centred outcome tools are available for nurses and informal caregivers to measure symptoms and needs from the person`s with dementia point of view. We therefore undertook validation (exploring semantic/conceptual equivalence, content validity, and views on clinical utility) for a measure (IPOS-Dem) in the community and acute care setting in Switzerland.
This was a rigorous, multi-step, cross-sectional, multi-method study conducted with nurses and relatives caring for people with dementia in the community and acute care setting. Multiple components were aligned: 1) forward and backward translation from German to Swiss German to achieve semantic equivalence; 2) focus groups to explore clinical utility and conceptual equivalence; 3) cognitive debriefing to review content validity. An expert review was included at the end of each phase.
Six people from the public and 24 nurses/relatives were included. Semantic equivalence was achieved after making 14 changes to the wording of items. Participants judged the IPOS-Dem (CH) as a clinically useful intervention in the domains of appropriateness, accessibility, practicability, and acceptability for the following reasons: (1) it enables support for informal caregivers, (2) it provides an overview of the priorities of care, thus supporting symptom review, (3) it allows nurses with different qualifications to contribute critical observations, thus fostering communication and teamwork, and (4) it increases an awareness of change in symptoms throughout the disease trajectory. In the cognitive debriefing interviews, setting and respondent-dependent differences in the conceptual understanding of item descriptors were observed for 11 of 31 items.
In this novel work, we demonstrate the newly-translated and culturally-adapted IPOS-Dem (CH) is a relevant and comprehensive measure for persons with mild to severe dementia. It can aid a generalist workforce across settings to assess palliative care-relevant symptoms and concerns.
痴呆症是一种进行性的终末期疾病。痴呆症患者在各个阶段都会出现症状，导致生活质量低下，并给护理人员带来相当大的负担。在急性和社区护理服务中，没有全面的、以患者为中心的结果工具可供护士和非正式护理人员从痴呆症患者的角度衡量症状和需求。因此，我们在瑞士的社区和急性护理环境中对一项测量工具（IPOS-Dem）进行了验证（探索语义/概念等效性、内容效度以及对临床效用的看法）。
这是一项严谨的、多步骤的横断面多方法研究，研究对象为在社区和急性护理环境中照顾痴呆症患者的护士和亲属。多个环节相互配合：1）从德语到瑞士德语进行正向和反向翻译以实现语义等效；2）焦点小组讨论以探索临床效用和概念等效性；3）认知反馈以审查内容效度。每个阶段结束时都进行了专家评审。
纳入了6名公众和24名护士/亲属。对项目措辞进行14处修改后实现了语义等效。参与者认为IPOS-Dem（CH）在适宜性、可及性、实用性和可接受性方面是一项临床有用的干预措施，原因如下：（1）它能为非正式护理人员提供支持；（2）它提供了护理重点的概述，从而有助于症状复查；（3）它允许不同资质的护士提供关键观察结果，从而促进沟通和团队合作；（4）它提高了对疾病全过程症状变化的认识。在认知反馈访谈中，31个项目中有11个项目在项目描述符的概念理解上存在因环境和受访者而异的差异。
在这项新的研究中，我们证明新翻译并经过文化调适的IPOS-Dem（CH）是一项适用于轻度至重度痴呆症患者的相关且全面的测量工具。它可以帮助不同环境中的全科医护人员评估与姑息治疗相关的症状和问题。
