Bruletti Gisella, Comini Laura, Scalvini Simonetta, Morini Roberta, Luisa Alberto, Paneroni Mara, Vitacca Michele
Servizio di Psicologia.
Amyotroph Lateral Scler Frontotemporal Degener. 2015 Jun;16(3-4):187-95. doi: 10.3109/21678421.2014.974616. Epub 2014 Nov 27.
Our objective was to explore strain and needs in caregivers of advanced ALS patients and correlate this burden with patient's clinical condition and caregiver's sociodemographic status. Fifty-eight caregivers completed the Family Strain Questionnaire-short form (FSQ-SF) and Caregiver Needs Assessment (CNA) during patients' hospitalization (T0); 39 caregivers were reassessed at 6-12 months (T1) and 13 caregivers at 18-24 months (T2) follow-up. FSQ-SF and CNA total scores (CNA-T), including the CNA subscores 'Emotional/Social Support Needs' (CNA-E) and 'Information/Communication Needs' (CNA-I), were compared to patients' clinical condition (measured by ALSFRS-R and FVC %) and caregivers' sociodemographic status. Results showed that high strain level was found in 80% of caregivers and persisted over time. At T0, CNA-T was moderate and was not correlated to site of ALS onset, patients' clinical variables, or caregiver's sociodemographic characteristics; CNA-I subscore was significantly correlated to bulbar onset. CNA-T and CNA-I were significantly reduced at T1 (both, p < 0.01). Caregivers' parental relationship to patient (filial) and working status influenced caregivers' needs. After a longer follow-up (T2), CNA-E significantly decreased vs. T0 score (p < 0.02). In conclusion, over time, caregivers of advanced ALS patients show persisting high strain while needs decline, although the level still remains high. Further studies are needed to propose the most appropriate support.
我们的目标是探究晚期肌萎缩侧索硬化症（ALS）患者照料者的压力及需求，并将这种负担与患者的临床状况和照料者的社会人口学状况相关联。58名照料者在患者住院期间（T0）完成了家庭压力问卷简表（FSQ-SF）和照料者需求评估（CNA）；39名照料者在6 - 12个月（T1）时接受重新评估，13名照料者在18 - 24个月（T2）随访时接受重新评估。将FSQ-SF和CNA总分（CNA-T），包括CNA子分数“情感/社会支持需求”（CNA-E）和“信息/沟通需求”（CNA-I），与患者的临床状况（通过ALS功能评定量表修订版（ALSFRS-R）和用力肺活量百分比（FVC%）测量）以及照料者的社会人口学状况进行比较。结果显示，80%的照料者存在高压力水平，且这种情况随时间持续存在。在T0时，CNA-T为中等水平，与ALS发病部位、患者的临床变量或照料者的社会人口学特征无关；CNA-I子分数与延髓发病显著相关。在T1时，CNA-T和CNA-I均显著降低（两者均p < 0.01）。照料者与患者的亲子关系（子女关系）和工作状况影响照料者的需求。经过更长时间的随访（T2），CNA-E与T0评分相比显著降低（p < 0.02）。总之，随着时间推移，晚期ALS患者的照料者虽需求有所下降但仍处于较高水平，而压力持续处于高位。需要进一步研究以提出最合适的支持措施。
