Development and sensibility assessment of a health‐related quality of life instrument for adults with severe disabilities who are non‐ambulatory

Abstract

Health-related quality of life (HRQoL) is defined as an individual's perception of how an illness and its treatment affect the physical, mental and social aspects of his or her life. HRQoL is seen as a multidimensional construct, which can be measured indirectly using multiple items in several domains (Vet et al., 2011). These domains encompass aspects of physical, psychological and social functioning. The domains of HRQoL are a subset of the eight-core quality of life (QoL) domains that have been identified and which cover all aspects of life: emotional well-being, interpersonal relationships, material well-being, personal development, physical well-being, self-determination, social inclusions and rights (Schalock et al., 2005) (Gómez et al., 2015. QoL is, therefore, broader than HRQoL because it includes evaluation of non-health-related features of life, whereas HRQoL is connected to an individual's health or disease status. As QoL is important to everyone (with or without disabilities), HRQoL focuses on the impact health status has on quality of life. HRQoL is especially important for people with chronic illness or disabilities since the consequences of their conditions play a prominent role in almost every aspect of their lives and are lifelong. Most interventions for these people have a common goal, not to cure but to preserve or enhance their health-related quality of

A New Screening Tool for Rapid Diagnosis of Functional and Environmental Factors Influencing Adults with Intellectual Disabilities

“…The senior’s daycare group was most affected by these changes, probably due to the combined effect of environmental changes: all of them lived in group homes (where there was a functional deterioration during the pandemic and improvement shortly after it) with personal factors—their other comorbidities due to their quick aging with the evidences already well-documented of the effect of the pandemic on the aging population in general [ 50 ]. Before the pandemic, the adults in this study, like adults with IDs in other countries, visited daycare centers and lived either at their family’s home or at various community group homes, with support from family members or paid service providers [ 3 , 34 , 51 ]. The daily program of constructed routines and activities established a stable framework consistently supporting their well-being and functional abilities [ 34 , 52 ].…”

Assessing the reliability and validity of a health‐related quality of life instrument, CPADULT, in a Dutch sample of adults with severe disabilities who are non‐ambulatory

“…Existing measures of HRQoL are not suitable, as they assume higher levels of motor and/or intellectual function (Zalmstra et al, 2021). Given the lack of any HRQoL measure specifically customised for adults with severe disabilities who are non‐ambulatory, there is need for a proxy HRQoL instrument that takes their severe motor disabilities and combined intellectual disabilities into account.…”

“…Given the lack of any HRQoL measure specifically customised for adults with severe disabilities who are non‐ambulatory, there is need for a proxy HRQoL instrument that takes their severe motor disabilities and combined intellectual disabilities into account. In a previous study, we developed an instrument to assess the HRQoL specifically for this target group (Zalmstra et al, 2021). Known as the CPADULT, the instrument is based on the Dutch version of the widely used Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) questionnaire, a measure of HRQoL for children with severe disabilities who are non‐ambulatory (Sickkids, 2021; Zalmstra et al, 2015) The CPADULT was developed by using a qualitative design involving a three‐step adaptation process including a ‘sensibility assessment’: (1) Focus groups of primary caregivers concerning the adaptation of the items and sensibility topics (comprehensibility, clarity of instructions, suitability of the output scales and ease of usage).…”

“…(2) E-survey amongst health-care professionals (healthcare psychologists, physicians, researchers, and therapists who are professionally involved with adults with severe motor and intellectual disabilities who are non-ambulatory) concerning content validity. (3) One-to-one interviews with primary caregivers discussing the items and sensibility topics (Zalmstra et al, 2021). Throughout the process, 72% of the items of the CPCHILD-DV remained unchanged, three items were added (e.g., 'menstruation pain' and 'experiencing sexuality'), and one element ('shaving') was added to an existing item concerning personal care.…”

Development and validation of a functional screening tool for adults with intellectual disabilities

“…Individuals with intellectual disabilities, especially those with severe disabilities, are generally at a high risk for functional and health‐related problems. Consequently, in addition to intellectual disabilities, these individuals may also be diagnosed with additional disorders (Ben David et al, 2022; Kadari & Shiri, 2015), including emotional–mental difficulties, challenging behaviours (Ahlstorm et al, 2020; Jonker et al, 2021), communication disorders, eating and swallowing disorders, hearing impairments, physical disabilities (Icht et al, 2021; Lotan et al, 2009; Manduchi et al, 2020; Oron et al, 2015; Zalmstra et al, 2021), epilepsy and autism (Perkins et al, 2010). The comorbidity characterising this population makes it more fragile than the general population (Perkins et al, 2010), causing relatively frequent hospitalizations and more extensive use of drugs, the effectiveness of which is not always evident (Matson & Neal, 2009).…”