Impact of the intellectual disability severity in the Spanish Personal Outcomes Scale

Abstract

Background The interest in measuring quality of life (QoL) in persons with intellectual disability (ID) has brought about a number of QoL measurements for this population. These measurements need to address two issues that have contributed to enhancing the current instruments. First, the necessity to develop measures with adequate psychometric properties, which has been discussed in recent studies, and second, the agreement between experts in analysing objective and subjective perspectives, as well as the use of self‐report to include the participation of the person with ID. The question that we set out to investigate in this paper is whether the measurements function properly for the person with ID, independent of their level of severity. We used the Spanish version of the Personal Outcomes Scale, as it is a psychometrically sound instrument and includes three sources of information (the person with ID, a professional and a family member). Method The sample was composed of 529 persons with ID (296 men, representing 55.95% of the total sample, and 233 women, with Mage = 35.03, SD = 10.82) from several regions of Spain, along with their professional of reference and a family member. The severity variable was estimated for each item based on estimations of differential item functioning. Results The results showed that several items were undervalued by the assessments if the severity of the ID was greater. Mainly, this difference was observed in the assessments by professionals and in the dimensions of rights, personal development and self‐determination. Conclusions This paper focuses on the uses and interpretations of the results of the QoL measurements in the Personal Outcomes Scale. The results indicate that, in our sample, when people with high levels of ID are assessed, the functioning of some items are affected by the severity of this disability. For correct use, these items must be interpreted on the basis of the results obtained. Additionally, it is necessary to thoroughly review the QoL indicators for persons with severe or profound ID.

Quality of Life Outcomes in a Community Cohort of Adults With an Intellectual Disability Using the Personal Outcome Scale

“…Our findings are congruent with those from previous studies, which suggest that observer reports may score people with more severe intellectual disability lower on certain QoL domains than the person would score themselves ( 20 ); this may also be a reflection of family input for people who have more severe-to-profound intellectual disability. This is demonstrated in Table 1 .…”

“…The POS is somewhat unique in its measurement of QoL for people with an intellectual disability, as it: (1) is based on a QoL-specific theoretical framework; (2) assesses personal outcomes with guided support in a semi-structured format; and (3) considers multi-informant reporting. To date, studies to test the reliability and validity of the POS have been conducted in the Netherlands (14), Portugal (15)(16)(17)(18), Spain (19)(20)(21), and Italy (22). In terms of clinical outcomes within these studies, in Portugal it was found that living circumstances were related most to outcomes on the POS (16).…”

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).…”

“…See Figure 1 (Watkins et al, 2006), and perceptions of pain (Benromano et al, 2017;Bromley et al, 1998) Quality of life (Balboni et al, 2013;Carb o-Carreté et al, 2019;Pérez-Cruzado & Cuesta-Vargas, 2013;Verdugo-Alonso et al, 2017), met/unmet needs (Schützwohl et al, 2018), life satisfaction (Schwartz & Rabinovitz, 2003), and adverse events and trauma (Wigham et al, 2011;Wigham et al, 2014). Mental health (Douma et al, 2006;Haynes et al, 2013;Hermans et al, 2013) concerns were self-reported including: depression (Benavidez & Matson, 1993;Esbensen et al, 2005;Gordon et al, 2007;Hall et al, 2014;Hermans et al, 2012;Kellett et al, 2015) and depressive symptoms (Mileviciute & Hartley, 2015), life events…”

Measuring quality of life of adults with intellectual disabilities: Psychometric evaluation of the personal outcomes scale in the United Kingdom

“…UK data have therefore been collected from people with greater variability of severity of intellectual disability than those included in previous studies. Further analysis of the data collected in Spain examined the effect of severity of intellectual disability on individual item functioning and found that the scores of a significant number of items were affected by severity (Carbo‐Carrete et al, 2019 ). Authors suggest this indicates the need for broader discussion of the adequacy of definitions of QoL dimensions and indicators for the whole spectrum of people with intellectual disability.…”