Dimensionality and internal structure of the Colombian version of the INICO‐FEAPS quality of life scale

Abstract

This study contributes to research on QoL measurement by providing the first empirical evidence regarding the dimensionality, internal structure and psychometric properties of the Colombian version of the INICO-FEAPS scale. Moreover, the study presents the first adaptation of a specific QoL scale for people with ID in Colombia, which may in the future be useful for implementing evidence-based practices and developing person-centred support plans.

Proxy‐report in individuals with intellectual disability: A scoping review

“…Modes of administration and sampling modes in these 40 studies were diverse including: cognitive interview [2], focus group [1], interviewer‐administered survey [24] of which two used a computer‐assisted programme [1] or interviewer‐administered modifications [1], self‐administered survey [14] with paper instrument [12], caregiver support or assisted completion [2], with visuals added [2], and with a pretest procedure to determine who could use a three‐point scale response option [1]. The topics of self‐report were varied among physical well‐being (Aznar et al, 2012; Balboni et al, 2013; Carbó‐Carreté et al, 2019; Pérez‐Cruzado & Cuesta‐Vargas, 2013; Schützwohl et al, 2018; Schwartz & Rabinovitz, 2003; Verdugo‐Alonso et al, 2017; Wigham et al, 2011; Wigham et al, 2014), mental well‐being (Benavidez & Matson, 1993; Bond et al, 2019; Dagnan et al, 2008; Esbensen et al, 2005; Gordon et al, 2007; Hall et al, 2014; Haynes et al, 2013; Hermans et al, 2012; Kellett et al, 2015; Masi et al, 2002; Mileviciute & Hartley, 2015; Penketh et al, 2014; Stancliffe et al, 2014; Watson et al, 1988), and social well‐being (Benromano et al, 2017; Bromley et al, 1998; Janeslätt et al, 2019; Johnson et al, 2014; Kellett et al, 2005; Kellett et al, 2015; Kramer et al, 2009; Liljenquist et al, 2019; Miller & Chan, 2008; Mumbardó‐Adam et al, 2018; O'Donovan et al, 2017; Pérez‐Cruzado & Cuesta‐Vargas, 2013; Perry & Felce, 2002; Turnpenny et al, 2018; Vlot‐van Anrooij et al, 2018; Walsh et al, 2018; Watkins et al, 2006) (Table 2).…”

“…Of the 18 articles with self‐report and proxy‐report information presented, three did not compare responses between proxy and self‐report (Bond et al, 2019; Dodd et al, 2009; Miller & Chan, 2008), and in one article, the study aimed to evaluate a scales psychometric properties in a different population and comparing response between self and proxy was not even a secondary objective (Verdugo‐Alonso et al, 2017). Fourteen articles presented data comparing responses from self‐report and proxy‐report, of these, three did not clearly outline their statistical analysis in section 2 (Gordon et al, 2007; Perry & Felce, 2002; Raluy‐Callado et al, 2013), and 11 articles presented a clear methodology of the statistical analysis performed to answer this key question (Balboni et al, 2013; Benavidez & Matson, 1993; Douma et al, 2006; Fisher et al, 2014; Knüppel et al, 2018; Mileviciute & Hartley, 2015; Penketh et al, 2014; Schützwohl et al, 2018; Schwartz & Rabinovitz, 2003; Watson et al, 1988; Wilson et al, 2016) (Table 3).…”

“…However, specific topics showed poor agreement, as indicated by a G coefficient lower than 0.40, including: ‘self‐care’ ( G = 0.32), ‘social relationships’ ( G = 0.13) and ‘exploitation risk’ ( G = 0.06) (Schützwohl et al, 2018). Specific aspects of scales showed varying agreement; one study found stronger relationships between personal development and rights and between rights and self‐determination, but smaller correlation coefficients for self‐determination and physical well‐being (Verdugo‐Alonso et al, 2017). Survey modifications were used, including asking proxy to complete ‘as if you were the person with intellectual disability’; in this strategy, all the correlation coefficients are statistically significant ( p < .001) and all the differences between the scores obtained by the pairs of caregivers were not statistically significant, except for the ‘Right’ domain ( t [42] = 2.09, p = .05; Cohen's d = 0.31) (Balboni et al, 2013).…”

“…This may be due to study differences, as the statistical approach used is often dictated by the form of data (nominal, ordinal, continuous as well as source and number of raters), with the common goal of establishing a level of evidence to support the substitution of a proxy measure for a self‐reported measure (McGraw & Wong, 1996; Shrout & Fleiss, 1979). However, in some studies, comparing self‐ and proxy‐report was not the primary aim of the study and the statistical methods used for the primary aim (validation) may not be adequate for comparing reporters (Verdugo‐Alonso et al, 2017). In evaluating the studies comparing responses between self‐report and proxy‐report, we found that the methods in some manuscripts were confusing; it was difficult for us to understand what statistical approaches were used, and it was unclear what responses were being compared.…”