Agreement between Patients with Parkinson’s Diseasend Their Caregivers in Measures of Patient''s Self Carebilities, Mental Health and Quality of Life
Date Issued
2009
Date
2009
Author(s)
Chao, Wan-Ching
Abstract
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.
Subjects
Parkinson''s disease
caregiver
measure of agreement
self care abilities
mental health
quality of life
SDGs
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