Pôle recherche SPES "Soins Palliatifs en Société", Maison Médicale Jeanne Garnier, 106 avenue Emile Zola, 75015, Paris, France.
Unité de Recherche Clinique URC HU PIFO, AP-HP, Hôpital Ambroise Paré, Boulogne, France.
BMC Palliat Care. 2019 Feb 11;18(1):19. doi: 10.1186/s12904-019-0403-z.
Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view.
Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire.
A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers' listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach's α 0.5-0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS ≥ 60%, 40-50% and ≤ 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms' severity and impact on life. Each subscale, except "possibility to refuse", correlated with general satisfaction.
Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings.
clinicaltrials.gov NCT02814682 , registration date 28.6.2016.
姑息治疗质量指标是护理人员和管理人员的优先事项，可用于改善各种护理环境并进行比较。患者及其家属的参与至关重要，但在实践中很少能实现。目前还没有经过验证的法语评估工具。由于不同国家的医疗护理组织方式不同，对现有问卷进行简单的文化适应性改编可能是不够的。本研究旨在开发和验证一种新的工具，以从患者的角度衡量姑息治疗的质量和满意度。
多专业工作组使用定性研究的结果来构建最初的 42 项条目集，以探索六个领域。在七家医院进行了横断面调查，涵盖了三种护理环境：两个姑息治疗病房、一个姑息治疗医院和四个有移动姑息治疗团队的标准医疗单位。所有条目都经过了可接受性评估。我们使用主成分分析（PCA）进行探索性结构分析，并通过与总体满意度评分和 MD 安德森症状量表（MDASI）问卷的比较来评估外部有效性。
共有 214 名患者完成了问卷。在对反应分布中的 7 个项目进行删除后，PCA 从 35 个最终项目中确定了 8 个可解释的领域：护理人员的可用性、安宁、信息质量、疼痛管理、护理人员的倾听技巧、心理社会和精神方面、拒绝（护理或志愿者）的可能性，以及对患者的尊重。除最后一项（0.15）外，所有分量表的内部一致性均为良好或可接受（Cronbach's α 0.5-0.84）。在按年龄、性别、姑息治疗表现量表（PPS≥60%、40-50%和≤30%）和护理环境定义的亚组中，整体结构都得到了很好的保持。总体满意度与 MDASI 问卷的两个评分呈负相关：症状的严重程度和对生活的影响。除“拒绝的可能性”外，每个分量表都与总体满意度相关。
Quali-Palli-Pat 似乎是一种有效的、可靠的、易于接受的法语工具，可以用来探索姑息治疗的质量和患者的满意度。它应该在更广泛的护理环境样本中得到验证。
clinicaltrials.gov NCT02814682，注册日期 2016 年 6 月 28 日。
