巴金森氏症病患與其主要照護者對病患之自我照顧能力、心理健康及生活品質評估一致性之研究

Abstract

巴金森氏症病患好發於中老年人，且常伴隨有焦慮或憂鬱之心理健康問題，進而影響病患之生活品質，主要的治療方式目前仍以藥物控制為主，且隨著疾病分期的進展，主要照護者對病患自我照顧能力、心理健康以及生活品質的評估愈顯重要，病患自評與主要照護者評估之間一致性愈佳，對醫療照護愈有益。但在臨床照護中發現，病患及主要照護者之間對於病患的自我照顧能力、心理健康狀況以及生活品質的評估並不一致，故引發本研究之目的在於瞭解巴金森氏症病患與其主要照護者對病患之自我照顧能力、心理健康及生活品質評估一致性之研究。 本研究採立意取樣，以北部某醫學中心之巴金森氏症門診以及「巴金森氏症暨運動障礙中心」之巴金森氏症病患與其主要照護者為研究對象，收案期間自民國97年12月中旬至98年3月底，共收案76位個案與其主要照護者，研究工具包括：巴氏量表、工具性日常生活活動量表、中國人健康量表以及臺灣簡明版世界衛生組織生活品質問卷，以問卷方式分別收集病患及其主要照護者資料。研究結果發現，身體外顯功能方面，病患與主要照護者評估巴氏量表平均一致性（Kappa值）為0.42；複雜性日常生活活動能力方面，工具性日常生活活動量表平均ㄧ致性（Kappa值）為0.46，亦為中等一致性。心理健康屬較為隱晦的狀況，中國人健康量表平均一致性（Kappa值）為0.05，一致性極低，以3分作為切分點，有61.8%的巴金森氏症病患自評有焦慮或憂鬱輕型精神症狀傾向，生活品質方面，病患自評及其主要照護者評估之平均一致性（Kappa值）為0.25，一致性低，且病患自評罹病後之生活品質明顯低於罹病前之生活品質(t=-12.14, p=0.00)。 巴金森氏症病患自評結果顯示基本日常生活活動能力與複雜性日常生活活動能力呈顯著正相關(r=0.79, p=0.00)，基本日常生活活動能力與生活品質呈顯著正相關(r=0.55, p=0.00)，複雜性日常生活活動能力與生活品質呈現顯著正相關(r=0.48, p=0.00)，心理健康與基本日常生活活動能力(r=-0.44, p=0.00)、複雜性日常生活活動能力(r=-0.32, p=0.00)以及生活品質(r=-0.50, p=0.00)均呈現顯著負相關，且疾病分期不同，病患在基本日常生活活動能力(F(2,73)=8.68, p=0.00)、複雜性日常生活活動能力(F(2,73)= 8.57, p=0.00)的執行也顯著不同。 主要照護者以女性居多，共53人(69.7%)，關係多為配偶，且居住在一起。每日照顧病患時間愈久，評估病患在基本日常生活活動能力(r=-0.51, p=0.00)、複雜性日常生活活動能力(r=-0.49, p=0.00)愈需要協助，且評估病患之生活品質(r=-0.43, p=0.00)較差；照顧年限愈久者，評估病患之基本日常生活活動能力(r=-0.24, p=0.03)、複雜性日常生活活動能力(r=-0.26, p=0.03)愈需要協助。主要照護者之身分為病患之配偶、以及主要照護者特性為「無」收入者以及「無」工作者有較低估病患之基本日常生活活動能力以及複雜性日常生活活動能力的趨勢。心理健康方面，主要照護者為「無配偶」者、與病患關係為「非配偶者」、「無」收入以及不與病患同住者亦有較低估病患之心理健康狀態的趨勢。生活品質方面，婚姻狀況為「無配偶」者、與病患關係為「非配偶者」、「無」收入者、與病患不同住者以及「無」工作者有較高估病患之生活品質的趨勢。 巴金森氏症病患之生活品質影響因子為基本日常生活活動能力(β=0.32, p=0.01)與疾病分期(β=-0.31, p=0.01)，基本日常生活活動能力可解釋變異量為19%，而疾病分期可解釋變異量7%，共可解釋變異量為26% (Adjusted R2=0.26)。 藉由本研究之發現，病患自評與主要照護者評估於基本日常生活活動能力以及複雜性日常生活活動能力之一致性較心理健康以及生活品質之ㄧ致性佳，巴金森氏症病患自我照顧能力愈佳，對生活品質愈滿意，且心理健康狀況愈好。主要照護者對病患的支持與協助對病患是相當重要，藉由主要照護者對病患需求的確認，提供必要協助，並鼓勵病患主動表達出想法，除了可加強病患基本日常生活活動能力及複雜性日常生活活動能力外，尚可提升病患與家屬者之間的一致性，也可使醫護之間的溝通更為明確，相對可提升病患的心理健康以及生活品質。期望將本研究之研究結果應用於臨床護理實務上，使主要照護者獲得充分的資訊及協助可使病患獲得更適切之照護。

Parkinson’s Disease (PD) occurs most among elderly people. Mental problems, namely anxiety and depression, significantly affect the Quality of Life (QOL) of patients with PD. Oral medication is currently the most widely used treatment for PD. Additionally, caregiver’s measures of patient’s self care abilities, mental health and QOL are essential for clinical decision making in patients in advanced stages of PD. Better agreements between patient self-rated and proxy lead to better treatment decisions. However, clinical experience indicates patients’ self-rated measures and reports from their caregivers often do not agree with each other. Hence, the main purpose of this investigation is to understand the agreement among reports in these factors. The data of 76 patients and their caregivers were recruited with purposive sampling from a PD out-patient clinical and center of Parkinsonism and movement disorder in a medical center in Taipei from December 2008 to March 2009. The data were accumulated using the Barthel Index, the Lawton Instrumental Activities of Daily Life, Chinese Health Questionnaire and WHOQOL-BREF Taiwan Version. The mean agreement values (Kappa) of Barthel Index and the Lawton Instrumental Activities of Daily Life in this study were 0.46 and 0.42, respectively, indicating moderate agreement. The mean Kappa value of Chinese Health Questionnaire was 0.05, signifying extremely low agreement. Using 3 as the cut-off point, 61.8% of the patients had non-psychotic mental disorders. The mean Kappa value of WHOQOL-BREF Taiwan Version was 0.25, demonstrating low agreement. The patient self-rated quality of life declined significantly after PD was diagnosed (t=−12.14, p=0.00). Significantly positive correlations were observed between patient’s self-rated basic activities of daily living (BADL) abilities and instrumental activities of daily living (IADL) abilities (r=0.79, p=0.00), BADL abilities and quality of life (r=0.55, p=0.00), and between IADL abilities and quality of life (r=0.48, p=0.00). Additionally, significantly negative correlations were noted between mental health and BADL abilities (r=−0.44, p=0.00), mental health and IADL abilities (r=−0.32, p=0.00), and between mental health and quality of life (r=−0.50, p=0.00). Patients in different stage of Parkinson’s disease have significant differences in BADL abilities (F(2,75)=8.68, p=0.00) and IADL abilities (F(2,75)= 8.57, p=0.00). Most caregivers in this investigation were female (n=53, 69.7%), spouses, and living with the patients. Significantly negative correlations were observed between the daily hours of care provided and patients’ BADL abilities, IADL abilities and quality of life measured by caregivers (r=−0.51, −0.49, −0.43, p=0.00, 0.00, 0.00, respectively). Caregivers who provided cared for patients for more hours per day rated their patients are more physically dependent and less satisfied with life. Additionally, significantly negative correlations were seen between the duration of care giving and BADL abilities and IADL abilities measured by caregivers (r=−0.24, −0.26, p=0.03, 0.03, respectively). Caregivers with longer durations of caregiving rated their patients as more physically dependent. Caregivers in the categories “patient’s spouse”, “having no income” and “unemployed” tended to underestimate patient’s BADL abilities and IADL abilities. Caregivers classed as “not married”, “not patient’s spouse”, “having no income” and “not living with the patient” tended to underestimate patient’s mental health. Caregivers who were “not married”, “not patient’s spouse”, “having no income” “not living with the patient” and “unemployed” tend to overestimate patient’s quality of life. Two variables, patient’s BADL abilities (β=0.32, p=0.01) and the stage (β= −0.31, p=0.01) were significant predictors for patient’s quality of life. The BADL abilities accounted for 19% of the variance, and the stage accounted for 7%. These two variables explained 26% of the total variance on patient’s quality of life. Analytical results demonstrate that BADL abilities and IADL abilities have better agreement than mental health and quality of life . Patients with better self-care abilities have better the mental health and quality of life. Furthermore, assistance and support from caregivers are important. Promoting the caregiver’s understanding of the patient’s needs, providing necessary assistance and encouraging patients to express their emotions, may improve the measures of agreement between the patients and the caregivers, and further enhance effective communication between physicians and caregivers, and thus improve the mental health and general quality of life of patients. Results of this investigation might be applied in clinical practice, by providing comprehensive information and assistance to equip caregivers with knowledge and skills, thus allowing the provision of appropriate care to patients.