Living with chronic illness scale: international validation of a new self-report measure in Parkinson’s disease

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.

Living with Chronic Illness Scale: Validation in a Type 2 Diabetes Mellitus Population

“…Finally, the instrument is precise and correlates positively, at least to a moderate degree, with the existence of social support and with each of the subdimensions of the scales measuring satisfaction and quality of life. The correlation data are similar to those reported for the population with Parkinson's disease [14], showing that the questionnaire measures these cross-sectional constructs in a similar way in each of these chronic conditions.…”

“…Besides, T2DM related questionnaire was used in order to know age of diagnosis, disease duration, and type and duration of treatment for T2DM. As in other validation studies carried out in Spain and UK [14] in addition to sociodemographic and disease related data, the following self-reported scales were also collected: LW-T2DM [15] scale focused to measure living with LTC. It is 26 items distributed in the following 5 dimensions: acceptance (4 items), coping (7 items), self-management (4 items), integration (5 items) and adjustment (6 items).…”

“…This scale, derived from the questionnaire "Living with Chronic Illness" (in Spanish, EC-PC) includes 26 items spanning the above-mentioned dimensions. The EC-PC scale has been validated in a population with Parkinson's disease and has adequate psychometric properties [14]. Its acceptability was later evaluated in a pilot study for other populations (with T2DM, heart failure -HF-, chronic obstructive pulmonary disease -CPOD-or osteoarthritis), which showed that the instrument was viable and presented acceptable preliminary levels of validity [15].…”

A pilot study on the Spanish version of the Psychosocial Adjustment to Illness Scale (PAIS‐SR) with carers of people with Parkinson's disease

“…The interdomain correlation was acceptable indicating that the domains are clearly related to each other in the process of adjustment to PD from the carers' point of view. Previously, other reported and related scales have not shown this cohesion between domains in relation to living with an LTC (Ambrosio et al, ) when acceptance of the condition did not necessarily relate to the self‐management or the coping skills.…”

“…PD involves changes for patients and families in all life spheres, and progressive adaptation becomes a key strategy for self‐management of the condition, normalization and family functioning (Ambrosio et al, ; Haahr, Østergaard, & Kirkevold, ; Kang & Ellis‐Hill, ; Mavandadi et al, ). Therefore, the psychosocial adjustment to PD is a complex process to several factors and mechanisms play a key role and, therefore, targeted interventions need to reflect the complexity and dynamism in clinical practice and integrate all the interactive components of the process and the multisystem approach where users, professionals and the community interact (Ambrosio et al, , ; Derogatis, ; Derogatis & Derogatis, ; Roddis, Holloway, Bond, & Galvin, ; Wang et al, ).…”