Living with long-term conditions: validation of a new instrument for family caregivers in a Spanish-speaking population

Introduction Optimising the management of chronicity has been a global challenge for decades. Individuals with long-term conditions (LTCs) and their families live with them for years. Thus, it is necessary to include both of their perspectives in the management and adaptation of the interventions proposed. The psychometric properties of the living with LTCs scale from the perspective of the family caregiver are unknown. The objective of the present study is to describe the psychometric properties of the EC-PC-Fam in a Spanish-speaking population.Methods An observational, cross-sectional study was performed with a retest of part of the sample. The fit of the model was optimised with a factorial analysis, and the psychometric properties were verified.Results A sample of 311 caregivers was recruited. Most of them were women (68.2%) and had a mean age of 58.29 +/- 9.91 years (range: 32-84 years). The initial version did not obtain acceptable fit scores. To improve the fit, different versions were tested, refining the distribution of the items until optimisation was reached in V.10 (19 items). Cronbach's alpha was 0.81 for the scale as a whole. The intraclass correlation coefficient was 0.77. The EC-PC-Fam scale is strongly and inversely correlated with a scale that measures the burden of the caregiver (rs=-0.46), and moderately related to the health-related quality of life (rs=0.373) and social support (rs=0.38).Conclusions The EC-PC-Fam scale from a family perspective is defined as a promising tool for promoting personalised care and for optimising the management of LTCs, and a new approach that includes family caregivers is proposed for clinical practice. The scale is an instrument with a moderate fit and optimum psychometric properties to measure living with LTCs from the perspective of a family caregiver. New validation studies are recommended to verify the fit of the proposed factorial solution.