Comparison of Patient-Reported and Caregiver-Reported Swallowing-Related Quality of Life in Parkinson’s Disease
Comparison of Patient-Reported and Caregiver-Reported Swallowing-Related Quality of Life in Parkinson’s Disease
复制标题
帕金森病患者报告和护理人员报告的吞咽相关生活质量的比较
DOI：
10.1007/s00455-021-10301-8
复制
发表时间：
2021
期刊：
影响因子：
2.6
通讯作者：
K. Garand
中科院分区：
文献类型：
--
作者：
Allie S. Zimmerman;S. Shune;Kimberly G. Smith;J. Estis;K. Garand
这项初步研究探讨了帕金森病（PD）患者及其护理人员报告的吞咽相关生活质量评分的一致性。36名患者-护理人员使用在线调查格式完成吞咽生活质量问卷（SWAL-QOL）。确定了其他背景和临床信息。完成了Wilcoxon符号秩检验，以比较PD患者和护理人员之间的平均评分。使用斯皮尔曼系数相关性检验探讨了可能影响SWAL-QOL评分的因素（年龄、就业状况、性别、种族、人种、既往吞咽评估或治疗史、护理人员对患者认知的关注、护理人员负担和自疾病发作以来的时间）。使用Holm-Bonferroni方法调整多重比较。结果并没有显示PD和照顾者对个人之间的SWAL-QOL评分的显着差异。配对患者和护理者评分之间存在中等程度的可靠性和一致性，平均ICC测量值为0.598（95% CI [358，0.748]）（F（71，72）= 2.451，p < 0.0001）。在调整多重比较后，发现照顾者负担是与照顾者报告分数相关的唯一重要因素。没有显着的影响因素，个人与PD的报告scores. These试点结果表明，个人与PD和他们的照顾者可能会报告类似的吞咽相关的生活质量评分。此外，照顾者负担似乎是照顾者报告评分的一个影响因素。未来的研究应调查将护理人员SWAL-QOL评分纳入评估中的临床益处，可以作为患者评分的补充，以识别两个体之间的差异，也可以在需要时代替患者评分。此外，应探讨照顾者负担及其对吞咽困难识别和管理的影响，并采取有针对性的干预措施来管理照顾者负担。
This pilot study explored agreement on swallowing-related quality-of-life scores reported by individuals with Parkinson’s disease (PD) and their caregivers. Thirty-six patient–caregiver pairs completed the Swallowing Quality of Life Questionnaire (SWAL-QOL) using an online survey format. Additional background and clinical information was ascertained. A Wilcoxon signed-rank test was completed to compare the means of scores between individuals with PD and caregivers. Factors potentially influencing SWAL-QOL scores (age, employment status, sex, ethnicity, race, previous history of swallowing evaluation or treatment, caregiver concern about patient cognition, caregiver burden, and time since onset of disease) were explored using Spearman Coefficient Correlation tests. The Holm–Bonferroni method was used to adjust for multiple comparisons. Results did not reveal significant differences in SWAL-QOL scores between individuals with PD and caregiver pairs. There was a moderate degree of reliability and agreement between paired patient and caregiver scores, with the average ICC measures being 0.598 (95% CI [358, 0.748]) ( F (71, 72) = 2.451, p < 0.0001). After adjusting for multiple comparisons, caregiver burden was found to be the only significant factor associated with caregivers’ reported scores. No significant influential factor on reported scores by individuals with PD was found. These pilot results suggest individuals with PD and their caregivers may report similar swallowing-related quality-of-life scores. Further, caregiver burden appears to be an influential factor for caregiver-reported scores. Future studies should investigate the clinical benefits of including caregiver SWAL-QOL ratings in assessments, either as a supplement to patient scores to identify discrepancies across the dyad or in place of patient scores if needed. Further, caregiver burden and its influence on dysphagia identification and management should be explored, with targeted interventions to manage caregiver burden.
帕金森氏病的患病率在北美。
DOI：
10.1038/s41531-018-0058-0
发表时间：
2018
期刊：
NPJ Parkinson's disease
影响因子：
--
作者：
Marras C;Beck JC;Bower JH;Roberts E;Ritz B;Ross GW;Abbott RD;Savica R;Van Den Eeden SK;Willis AW;Tanner CM;Parkinson’s Foundation P4 Group
通讯作者：
Parkinson’s Foundation P4 Group