Abstract
Understanding how a person lives with a chronic illness, such as Parkinson’s disease (PD), is necessary to provide individualized care and professionals role in person-centered care at clinical and community levels is paramount. The present study was aimed to analyze the psychometric properties of the Living with Chronic Illness-PD Scale (EC-PC) in a wide Spanish-speaking population with PD. International cross-sectional study with retest was carried out with 324 patients from four Latin American countries and Spain. Feasibility, acceptability, scaling assumptions, reliability, precision, and construct validity were tested. The study included 324 patients, with age (mean±s.d.) 66.67±10.68 years. None of the EC-PC items had missing values and all acceptability parameters fulfilled the standard criteria. Around two-third of the items (61.54%) met scaling assumptions standards. Concerning internal consistency, Cronbach’s alpha values were 0.68–0.88; item-total correlation was >0.30, except for two items; item homogeneity index was >0.30, and inter-item correlation values 0.14–0.76. Intraclass correlation coefficient for EC-PC stability was 0.76 and standard error of measurement (s.e.m.) for precision was 8.60 (for a EC-PC s.d.=18.57). EC-PC presented strong correlation with social support (rS=0.61) and moderate correlation with life satisfaction (rS=0.46). Weak and negligible correlations were found with the other scales. Internal validity correlations ranged from 0.46 to 0.78. EC-PC total scores were significantly different for each severity level based on Hoehn and Yahr and Clinical Impression of Severity Index, but not for Patient Global Impression of Severity. The EC-PC has satisfactory acceptability, reliability, precision, and validity to evaluate living with PD.
Highlights
Demographic changes happening in the twentieth century in the Western world such as ageing and increase in life expectancy have produced a significant growth in chronic illnesses in the contemporary society
Three-hundred twenty-four patients diagnosed with Parkinson’s Disease (PD), 52.78% men, mean (± s.d.) age 66.67 ±10.68 years were included
Weak or negligible correlations were found between Living with Chronic illnessPD Scale (EC-PC) and the clinician-based PD assessments
Summary
Demographic changes happening in the twentieth century in the Western world such as ageing and increase in life expectancy have produced a significant growth in chronic illnesses in the contemporary society. Neurodegenerative and progressive disorders such as Parkinson’s Disease (PD) stand out. PD is the second most common neurodegenerative disease, after Alzheimer’ disease, affecting 1% of all people over 60 years of age in industrialized countries.[2] PD prevalence is increasing and it is expected that the number of PD patients will double by 2030.3. PD is a complex and disabling disorder manifested through a combination of characteristic motor signs, such as bradykinesia, rigidity, resting tremor, and postural instability and non-motor symptoms such as, for example, psychiatric disorders, autonomic disturbances, pain, and fatigue.[4] Throughout the PD course, patients experience a progressive intensification of symptoms and increasing limitations to the performance of daily activities
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