Al Ofair Abdulhadi A, Alamri Muhanned, Alshehri Sultan H, Alzahrani Ziyad A, Alrumaih Alwaleed K, Syed Wajid, Al-Arifi Mohamed N, Assiri Moahmmed A, Muayqil Taim A, Alwhaibi Abdulrahman
College of Pharmacy, King Saud University, Riyadh 11451, Saudi Arabia.
College of Medicine, King Saud University, Riyadh, Saudi Arabia.
Saudi Pharm J. 2023 Oct;31(10):101765. doi: 10.1016/j.jsps.2023.101765. Epub 2023 Sep 9.
We aimed to assess the family caregivers' level of knowledge and attitudes about Parkison's disease (PD), identify factors affecting their knowledge, evaluate their quality of life (QoL) and factors influencing it and to define the effect of PD on activities of daily living (ADLs) of PD patients.
We developed and validated a questionnaire to assess the level of knowledge and attitudes of family caregivers toward PD, effects of PD on caregivers' QoL as well as its effects on activities of daily living (ADLs) of patients from the caregivers' perspective. A scoring system was utilized and SPSS was used to evaluate the differences in responses between the groups; p < 0.05 indicated statistical significance.
69 caregivers and their corresponding patients were included in the study. Family caregivers had a low level of knowledge, as reflected by a mean score of 3.45 out of 8. However, 62.3% were aware of all medications used by their patients. Additionally, the level of knowledge was associated with caregivers' gender as 57.1% of the female caregivers had medium PD knowledge scores while 58.5% of the male had low scores (p = 0.038). The level of knowledge was also associated with daily caregiving hours as only 44.5% of caregivers whom spending 0-5 h/day had medium and high knowledge scores while greater proportions with same scoring levels were found among those providing care > 5 h/day (75.0% in > 5-10 hrs; 52.4% in > 10-24 hrs; p = 0.024). Most caregivers confirmed their QoL had declined, yet the male caregivers had better QoL than females (p = 0.026). Longer caregiving time was associated with decline (p = 0.016) and severe effect on QoL of caregivers (p = 0.04).
Caregivers of PD patients had a low level of knowledge. Female caregivers had significantly higher level of PD knowledge than their male counterparts. Low level of PD knowledge was significantly associated with shorter caregiving time per day. Longer caregiving time was significantly associated with a decline in caregivers' QoL. Increasing awareness and knowledge among caregivers is necessary to ensure better treatment outcomes and improve the QoL of both caregivers and patients.
我们旨在评估帕金森病（PD）家庭照护者对该病的知识水平和态度，确定影响其知识水平的因素，评估他们的生活质量（QoL）及其影响因素，并明确PD对PD患者日常生活活动（ADLs）的影响。
我们编制并验证了一份问卷，以从照护者的角度评估家庭照护者对PD的知识水平和态度、PD对照护者生活质量的影响以及对患者日常生活活动的影响。采用了评分系统，并使用SPSS评估各组之间的回答差异；p<0.05表示具有统计学意义。
69名照护者及其相应的患者被纳入研究。家庭照护者的知识水平较低，平均得分为3.45分（满分8分）。然而，62.3%的照护者知晓其患者使用的所有药物。此外，知识水平与照护者的性别有关，57.1%的女性照护者帕金森病知识得分中等，而58.5%的男性得分较低（p=0.038）。知识水平还与每日照护时长有关，每天照护0-5小时的照护者中只有44.5%的人知识得分中等及以上，而在每天照护时长超过5小时的照护者中，相同得分水平的比例更高（5-10小时的照护者中为75.0%；10-24小时的照护者中为52.4%；p=0.024）。大多数照护者确认他们的生活质量有所下降，但男性照护者的生活质量优于女性（p=0.026）。更长的照护时间与生活质量下降有关（p=0.016），并且对照护者的生活质量有严重影响（p=0.04）。
PD患者的照护者知识水平较低。女性照护者的帕金森病知识水平明显高于男性。帕金森病知识水平低与每天较短的照护时间显著相关。更长的照护时间与照护者生活质量下降显著相关。提高照护者的意识和知识水平对于确保更好的治疗效果以及改善照护者和患者的生活质量是必要的。
