Hodiamont Farina, Hock Helena, Ellis-Smith Clare, Evans Catherine, de Wolf-Linder Susanne, Jünger Saskia, Diehl-Schmid Janine, Burner-Fritsch Isabel, Bausewein Claudia
Department of Palliative Medicine, LMU University Hospital, LMU Munich, Munich, Germany.
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
Palliat Med. 2021 May;35(5):962-971. doi: 10.1177/02692163211004403. Epub 2021 Apr 16.
Dementia is a life-limiting disease with high symptom burden. The Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem) is the first comprehensive person-centered measure to identify and measure palliative care needs of people with dementia. However, such a measure is missing in the German health care system.
To develop a culturally adapted German version of the IPOS-Dem and determine its content validity as a foundation for comprehensive psychometric testing.
Cognitive interview study with intermittent analysis and questionnaire adaptation. Interview guide and coding frame followed thematic analysis according to Willis complemented by Tourangeau's model of cognitive aspects of survey methodology: comprehension, retrieval, judgment, response.
Purposive sample with professionals ( = 29) and family carers ( = 6) of people with advanced dementia in seven nursing homes and person's own home care in four interview rounds ( = 11; 10; 7; 7).
IPOS-Dem was regarded as comprehensive and accessible. Cultural adaption pertained to issues of comprehension and judgment. Comprehension challenges referred to the person-centered concept of "being affected by" used in the POS-measures. Judgment problems related to persons with limited communication causing challenges in assessment.
Most issues of cultural adaptation could be addressed by questionnaire modifications. However, interviews unveiled fundamental challenges for using proxy reported person-centered assessments. Continuous training on how to use the instrument is imperative to integrate the person-centered approach of palliative care into nursing homes as a key provider of generalist palliative care for people with dementia. The refined version is ready for psychometric testing.
痴呆症是一种会影响寿命且症状负担沉重的疾病。痴呆症综合姑息治疗结果量表（IPOS-Dem）是首个以患者为中心的综合性工具，用于识别和衡量痴呆症患者的姑息治疗需求。然而，德国医疗体系中缺少这样一种工具。
开发经过文化调适的德语版IPOS-Dem，并确定其内容效度，为全面的心理测量测试奠定基础。
采用认知访谈研究，进行间歇分析和问卷调适。访谈指南和编码框架遵循威利斯提出的主题分析，并辅以图兰乔的调查方法认知方面模型：理解、检索、判断、回应。
采用目的抽样法，选取了来自七家养老院中晚期痴呆症患者的专业人员（n = 29）和家庭护理人员（n = 6），以及来自四家接受居家护理患者的人员，分四轮进行访谈（n = 11；10；7；7）。
IPOS-Dem被认为具有全面性和易用性。文化调适涉及理解和判断方面的问题。理解方面的挑战涉及POS量表中使用的以患者为中心的“受影响”概念。判断问题与沟通能力有限的患者有关，这给评估带来了挑战。
大多数文化调适问题可通过修改问卷来解决。然而，访谈揭示了使用代理报告的以患者为中心评估方法存在的根本挑战。必须持续开展关于如何使用该工具的培训，以便将姑息治疗的以患者为中心方法融入养老院，因为养老院是为痴呆症患者提供全科姑息治疗的主要机构。经过完善的版本已准备好进行心理测量测试。
