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Abstract：
BACKGROUND: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients\' medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents\' LYOL.
METHODS: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent\'s LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach\'s alpha.
RESULTS: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed ≥5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item\" Given a copy of their treatment plan\" highest (mean 3.96), whereas \"encouragement to get to a specific group or class to cope with the condition\" (mean 1.74) was rated lowest. Cronbach\'s alpha was 0.84. A unidimensional structure of the questionnaire was found (Kaiser-Meyer-Olkin 0.86, Bartlett\'s test for sphericity p < 0.001), with items\' factor loadings ranging from 0.46 to 0.82.
CONCLUSIONS: The nine-item questionnaire can be used as efficient tool for assessing PCC during the LYOL retrospectively and by proxies.
BACKGROUND: The study was registered in the German Clinical Trials Register ( DRKS00011925 ) on 13 June 2017.
METHODS: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent\'s LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach\'s alpha.
RESULTS: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed ≥5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item\" Given a copy of their treatment plan\" highest (mean 3.96), whereas \"encouragement to get to a specific group or class to cope with the condition\" (mean 1.74) was rated lowest. Cronbach\'s alpha was 0.84. A unidimensional structure of the questionnaire was found (Kaiser-Meyer-Olkin 0.86, Bartlett\'s test for sphericity p < 0.001), with items\' factor loadings ranging from 0.46 to 0.82.
CONCLUSIONS: The nine-item questionnaire can be used as efficient tool for assessing PCC during the LYOL retrospectively and by proxies.
BACKGROUND: The study was registered in the German Clinical Trials Register ( DRKS00011925 ) on 13 June 2017.
摘要：
背景：由于患者医疗的复杂性，在生命的最后一年（LYOL）提供以患者为中心的护理（PCC）可能具有挑战性，社会和心理需求，特别是在慢性疾病的情况下。评估PCC有助于确定需要改进的领域。因为不是所有的病人都能接受调查,我们为代理人提供了一份问卷,目的是回顾性评估在整个LYOL过程中患者在护理中的中心性.这项研究旨在评估德国慢性病患者评估（PACIC）的改编版本的可行性和有效性，该版本用于调查丧亲者，以评估死者LYOL期间的PCC。
方法：德国PACIC简表（11项）适用于九项版本，用于在死者的LYOL（PACIC-S9-Proxy）上测量丧亲者。项目按五点李克特量表进行评级。PACIC适应和验证是科隆地区横断面调查的一部分。参与者是通过自我选择和实践伙伴积极招募的。使用描述性统计分析社会人口统计学特征和缺失数据。进行探索性因素分析以评估PACIC-S9-Proxy的结构。内部一致性是使用Cronbach的alpha进行估计的。
结果：在参与调查的351名举报人中，230人（65.52％）认为死者在死亡前患有慢性病。其中193人（83.91％）完成了问卷的≥5项，并被纳入分析。回答最少的项目是项目（74.09％）是项目4（鼓励分组和班级应对）。最常回答的项目（96.89％）是项目2（对护理组织的满意度）。举报人对“给定其治疗计划的副本”项目的评分最高（平均3.96），而“鼓励去特定的群体或班级应对这种情况”(平均1.74)被评为最低。克朗巴赫的阿尔法是0.84。发现问卷的一维结构（Kaiser-Meyer-Olkin0.86，Bartlett\的球形度测试p<0.001），项目的系数载荷范围从0.46到0.82。
结论：九项问卷可作为回顾性分析和代理评估生命周期中PCC的有效工具。
背景：该研究于2017年6月13日在德国临床试验注册中心（DRKS00011925）注册。
方法：德国PACIC简表（11项）适用于九项版本，用于在死者的LYOL（PACIC-S9-Proxy）上测量丧亲者。项目按五点李克特量表进行评级。PACIC适应和验证是科隆地区横断面调查的一部分。参与者是通过自我选择和实践伙伴积极招募的。使用描述性统计分析社会人口统计学特征和缺失数据。进行探索性因素分析以评估PACIC-S9-Proxy的结构。内部一致性是使用Cronbach的alpha进行估计的。
结果：在参与调查的351名举报人中，230人（65.52％）认为死者在死亡前患有慢性病。其中193人（83.91％）完成了问卷的≥5项，并被纳入分析。回答最少的项目是项目（74.09％）是项目4（鼓励分组和班级应对）。最常回答的项目（96.89％）是项目2（对护理组织的满意度）。举报人对“给定其治疗计划的副本”项目的评分最高（平均3.96），而“鼓励去特定的群体或班级应对这种情况”(平均1.74)被评为最低。克朗巴赫的阿尔法是0.84。发现问卷的一维结构（Kaiser-Meyer-Olkin0.86，Bartlett\的球形度测试p<0.001），项目的系数载荷范围从0.46到0.82。
结论：九项问卷可作为回顾性分析和代理评估生命周期中PCC的有效工具。
背景：该研究于2017年6月13日在德国临床试验注册中心（DRKS00011925）注册。
