Is It Feasible to Measure Frailty in Older People with ID and How Frail Are People with ID Compared to People from the General Population?

Until now, three measures of frailty have been applied in the ID population. First, Brehmer and Weber investigated frailty in older people with ID. They developed an experience-based questionnaire specially for people with ID that classified over a quarter (27%) of 50 included adults aged 50 years and over as frail (Brehmer-Rinderer, Zeilinger, Radaljevic, & Weber, 2013). This scale has not yet been validated in terms of predictive value for adverse health outcomes, and the uniqueness of the questionnaire makes direct comparison with the general population not yet possible.

Second, the frailty ‘phenotype’ developed by Fried and colleagues (Fried et al., 2001), was applied in the НА-ID study (Table 24.1). According to the frailty phenotype of Fried, 11% of those aged 50—64 years, and 18% of those aged 65 years and over were trail (Evenhuis, Hermans, Hilgenkamp, Bastiaanse, & Echteld, 2012). Compared to the general population in which 7—9% of those aged 65 years and over

 Frailty measures in The Healthy Ageing and Intellectual Disability Study (HA-ID)

Figure 24. Frailty measures in The Healthy Ageing and Intellectual Disability Study (HA-ID).

are found to be frail, these percentages are rather high, especially for those aged 50—64 years (de Vries et al., 2011; Fried et al., 2001; Syddall et al., 2010).

Third, a frailty index was twice developed and applied in people with ID. These studies show that characteristics of the frailty index for people with ID appeared comparable to those in the general population: similar distribution, correlation with age and an observed maximum score around 0.7 (Drubbel et al., 2013, Mitnitski et al., 2001, Rockwood et al., 2007). Furthermore, the index’s correlation with age was not influenced by the choice of the deficits, which indicates structural validity (Schoufour, Erler, et al., 2017). The score is represented on a continuous scale, which means that it is not designed to be used with a cut-off value to determine the prevalence of frailty. Schoufour et al. showed that the average frailty index score for people with ID aged 50 years and over in the НА-ID study was 0.27, equivalent to having an average of 14 out of 51 deficits. Results from general older populations (generally 65 years and over) usually show a mean score between 0.08 and 0.17 (Drubbel et al., 2013, Mitnitski et al., 2001; Rockwood et al., 2007, Romero-Ortuno & Kenny, 2012). Finding of the HA-ID

Table 24.1 НА-ID study’s frailty phenotype (based on criteria in Fried et al., 2001)

Characteristics matched to health measures


Characteristics of frailty


Shrinking: weight loss; loss of muscle mass (sarcopenia)




Poor endurance; exhaustion




Low activity


Cardiovascular health measure


Baseline: > 10 lbs loss unintentionally in prior year


Grip strength: lowest 20% (by gender, body mass index)


‘Exhaustion’ (self-report)


Walking time/15 feet: slowest 20% (by gender, height)


kcal/week: lowest 20%: males: <383 kcal/week; females: <270 kcal/week


Presence of frailty

Positive for frailty phenotype: > 3 criteria

Intermediate or pre-frail: 1 or 2 criteria present

study were directly compared to findings in the general population and it was observed that people with ID accumulate more deficits at a younger age than observed in the general population (Rornero- Ortuno & Kenny, 2012; Schoufour, Echteld, & Evenhuis, 2017) (Figure 24.2). Although the frailty index was clearly able to show differences in frailty levels, from the almost 1000 participants included there was not one person that had no deficits at all, in other words belonged to the so-called zero-state (Schoutour, van Wijngaarden, et al., 2014). Additionally, only few (6.6%)) could be classified as ‘least frail’ (FI < 0.10), whereas in the general population this percentage ranges between 43% (70 years and over) and 76% (50 years and over) (Rockwood & Mitnitski, 2011; Romero-Ortuno & Kenny, 2012; Schoutour, van Wijngaarden, et al., 2014). In addition, McKenzie et al., constructed a frailty index for almost 8000 people with ID, aged 18—99 years old. This frailty index was very similar to the HA-ID index, but also included people aged <50 years. They found already relatively high frailty index scores for people aged below the age ot 30 and a high association with frailty index score and age (McKenzie, Ouellette-Kuntz, & Martin, 2015). The average score tor the total population was 0.22 (SD = 0.13).

We conclude that frailty can be measured in people with ID, using existing instruments. The distribution of frailty of the 50+ ID population is comparable to that of the 70+ general population. Compared to the general 50+ population, high frailty scores are more prevalent. There is an increased health risk from a young age onwards compared to the general population (Figure 24.3).

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