![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/09\/Indlaegsbillede.png?resize=714%2C174&quality=80&ssl=1\")
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Dorthe Gaby Bove <\/span>1,2<\/span><\/strong>, Trine Holse Guldbjerg <\/span>3<\/span><\/strong>, Maya Tiana M\u00f8ller Christensen <\/span>1<\/span><\/strong>, <\/span>mtmc@pha.dk<\/a> Cecilie K. Moesby-Jensen <\/span>3,4<\/span><\/strong><\/p>\n 1 <\/span><\/strong>Centre of Health, University College Absalon, Denmark DOWNLOAD ARTICLE<\/a><\/p>\n Abstract Keywords<\/span><\/strong>: care, frailty, intellectual disability, nursing, review, self-report, old age, QoL instrument.<\/span><\/p>\n Dansk resum\u00e9 N\u00f8gleord:<\/strong> omsorg, skr\u00f8belighed, intellektuel funktionsneds\u00e6ttelse, sygepleje, vurdering, selvrapportering, alderdom, instrument til m\u00e5ling af livskvalitet (QoL)<\/p>\n<\/div>\n Introduction Existing studies on adults with intellectual disabilities cannot simply be generalised to this subgroup due to their distinct needs, necessitating dedicated research into appropriate assessment methods (3,8,9). Central to addressing these needs is the accurate measurement of self-reported Quality of Life (QoL), as it directly reflects the individual’s perceptions and experiences, providing invaluable insights into their well-being. This is particularly important for individuals with intellectual disabilities, whose unique challenges and needs may not be fully captured through proxy reporting by caregivers or family members (13\u201315). Although proxy reporting is sometimes necessary, discrepancies between self- and proxy reports remain documented (14).<\/span><\/p>\n The United Nations Convention on the Rights of Persons with Disabilities (CRPD) underscores the right of individuals with disabilities to express their views and participate in matters affecting their lives. Enabling self-reporting is therefore not only a matter of research validity, but an essential component of upholding autonomy, agency and inclusion of older individuals with intellectual disabilities and is central to high-quality nursing care.<\/span><\/p>\n A systematic literature review, including 73 studies, demonstrated that older individuals with intellectual disabilities can benefit from supportive interventions tailored to their age, level of intellectual disability, and individual needs. The review identified a wide variety of methods and tools used to assess QoL, reflecting on di<\/span>erse ways QoL was defined, described, or categorised (16). For nursing practice, reliable self-report measures are important for person-centred assessment and care planning. QoL is commonly understood as a multidimensional construct encompassing physical, emotional, and social domains (17,18). Existing QoL frameworks for adults with intellectual disabilities describe QoL as multidimensional, including domains such as emotional well-being, social inclusion, and self-determination (17,18).<\/span><\/p>\n However, a critical gap remains in determining which QoL measures are best suited for older individuals with intellectual disabilities and how they can be adapted to accommodate this population\u2019s unique needs. This scoping review aims to map current knowledge and identify gaps in self-reported QoL assessments for older individuals with intellectual disabilities, thereby informing future research, policy planning, and individualised care approaches.<\/span><\/p>\n Methods The review protocol was pre-registered on Open Science Framework (OSF) on May 3, 2024 (blinded). Full details of the preregistered eligibility criteria, search strategy, and planned data extraction categories are available in the protocol (OSF, blinded). Deviations from the protocol are described below and summarised under Strengths and limitations.<\/span><\/p>\n Stage 1: Identifying the research question Stage 2: Identifying relevant studies An updated search was conducted in PubMed using the following strategy: (\u201cIntellectual Disa-bility\u201d [MeSH] OR \u201cIntellectual Disab*\u201d OR \u201cIntel-lectual disorder*\u201d OR \u201cIntellectual limitation*\u201d OR \u201cIntellectual impairment\u201d OR \u201cMental retar-dation\u201d OR \u201cMental deficienc*\u201d OR \u201cMental dis-ab*\u201d OR \u201cMental handicap*\u201d OR Oligophrenia OR \u201cSubnormal intelligence\u201d) AND (\u201cQuality of Life\u201d [MeSH] OR \u201cQuality of life\u201d OR QoL) AND (self-reported OR self-measurement OR \u201cSelf-Assessment\u201d [MeSH] OR self-assessment OR self-evaluation). The search identified 40 additional records, none of which met the inclusion criteria.<\/span><\/p>\n Stage 3: Study selection Participants were individuals aged 55 years or older diagnosed with intellectual disability, according to ICD-10 or DSM-5 criteria (2,22).<\/span><\/p>\n Participants were defined a priori as individuals aged 55 years or above, in line with the pre-registered protocol (OSF, blinded). This constitutes a deviation from the protocol, as no identified studies exclusively targeted individuals aged 55 and above; studies were therefore included where individuals aged 50 and above could be identified as a distinguishable subgroup. This deviation is discussed further under Strengths and limitations.<\/span><\/p>\n The inclusion criteria allowed for studies using self-reported instruments that assessed overall QoL or one or more of the eight domains defined in Schalock and Verdugo\u2019s conceptual model (e.g., emotional well-being, social inclusion, personal development) (17).<\/p>\n Studies focusing exclusively on related constructs such as mental health, depression, or life satisfaction were excluded unless the tool captured multiple QoL-relevant domains. During the initial screening process, it was decided to include studies in which the population was broader but distinguished in subgroups.<\/span><\/p>\n The following types of studies were included: Research studies, both quantitative, qualitative, mixed methods, systematic reviews, meta-analyses, case studies, editorials, and guidelines published in peer-reviewed journals. To be included studies had to be published between 2000 and 2024. Book chapters, editorial reports, study protocols, non-peer-reviewed articles, and dissertations\/theses were excluded.<\/span><\/p>\n We considered including grey literature, but preliminary scoping suggested a lack of relevant material specifically focused on older individuals with intellectual disabilities. Given the likely absence or low quality of such sources, we chose to limit the search to peer-reviewed literature. The selection process was conducted using Covidence (23). Titles and abstracts were screened independently by two reviewers (second and third authors).<\/span><\/p>\n Disagreements were resolved through discussion, and when consensus could not be reached (N=15), a third reviewer was consulted (first author). During full-text screening, studies were excluded if they did not meet the predefined eligibility criteria, such as not involving older individuals with intellectual disabilities, not reporting on self-reported QoL, or lacking empirical data. <\/span>The reference list of included studies was examined to ensure all relevant studies have been identified. A total of 5 studies were included, all of which were peer-reviewed quantitative studies with the primary data of self-reported or guided self-report QoL. All types of peer-reviewed studies were considered, but the screening of all articles found only five primarily quantitative studies; see Figure 1<\/strong>.<\/span><\/p>\n Stage 4: Charting the data Stage 5: Collating, summarising and reporting the results Results Included studies and characteristics, QoL-instrument and form of administration The mode of administration is reported alongside each instrument because it reflects the degree to which the QoL data can be considered directly self-reported versus supported self-report (e.g., through interviewer assistance or easy-read adaptation), which is central to the aim of this review.<\/p>\n Table 3<\/span><\/strong> provides an overview of the intended purpose and target population of each instrument, as described in its original validation literature, rather than how it was specifically applied within the included studies (see <\/span>Table 2<\/span><\/strong> for study-level application).<\/span><\/p>\n This distinction was made to illustrate the extent to which the instruments used in this population were originally developed and validated for people with intellectual disabilities, as opposed to adapted from general-population tools. The five included studies varied considerably in sample size (ranging from 216 to 13,642 participants), age composition, and severity of intellectual disability, as detailed in Table 2<\/strong>.<\/span><\/p>\n Two studies used the EPR (25,26), a QoL instrument developed specifically for people with intellectual disabilities, while one study used ASCOT-QoL (26), a general social care outcomes tool with an easy-read adaptation for people with intellectual disabilities. One study (28) combined several instruments assessing related constructs, including both general-population measures (depression, anxiety, mental health) and instruments developed specifically for people with intellectual disabilities (self-determination), and one study (27) used a study-specific survey.<\/span><\/p>\n Across studies, self-report was most often supported through interviewer administration, computer-assisted interviewing, or easy-read adaptation. Reported older-age subgroups varied across studies, ranging from 50 years and above (24,25,28) to 55 years and above (28) and 65 years and above (26).<\/span><\/p>\n Study design and setting Study participants This decision reflects evidence that ageing-related changes often occur earlier in people with intellectual disabilities compared to the general population. Furthermore, the severity or type of intellectual disability was not comprehensively described in the included studies. In all cases, participants were broadly classified as having mild or moderate intellectual disabilities, without further specification regarding cognitive functioning levels or additional health conditions. <\/span>Several studies lacked comprehensive reporting of age, gender, response rate and form of administration. Both age and gender were primarily split into subgroups.<\/span><\/p>\n Health and QoL Social and Environmental Influences According to Emerson and Hatton, women without a boyfriend or spouse reported higher levels of confidence, while women with a boyfriend or spouse had lower subjective well-being – possibly because they were at higher risk of entering into an abusive or unequal relationship. Additionally, the frequency of contact with friends who also had intellectual disabilities was strongly associated with more positive well-being and served as a protective factor against feeling \u201chelpless\u201d. In contrast, the frequency of seeing friends without intellectual disability did not affect their well-being (27).<\/span><\/p>\n Discussion Overall, 10 different surveys and tools were used, as some studies used more than one tool. Only half of the tools were specific to the intellectual disability population; three of the ten tools were specifically developed to measure QoL, one was a survey developed to measure key concepts from QoL domains, and the remaining four were specific to mental health and decision-making, which is closely related to perceived QoL. Multiple studies included individuals across different age groups from 18 years and above, with explicit subgroups of ages 50 years and above. This shows that there is no single standardised QoL-tool for older individuals with intellectual disabilities.<\/span><\/p>\n The limited number of studies specifically related to older individuals with intellectual disability is a major limitation of this scoping review and, furthermore, indicates that there are extensive knowledge gaps regarding this population and QoL.<\/p>\n This scoping review found that there are few studies regarding QoL and older individuals with intellectual disabilities, heterogenic QoL tools and that the majority of the studies have a broader age range with smaller older subgroups and no specific validated QoL tools for older individuals with QoL. Moreover, this scoping review found that there are validated QoL tools for individuals with intellectual disabilities such as the IDS-TILDA and the EPR, with the ASCOT-QoL having an easy-to-read version for individuals with intellectual disabilities (24\u201326,28).<\/span><\/p>\n This scoping review highlights significant gaps and inconsistencies in the measurement of self-reported QoL in older individuals with intellectual disabilities. The findings underscore the need for guidelines and standardised measurement tools that are validated for self-administered QoL measurements among older persons with intellectual disabilities. <\/span>According to Maguire et al., this is not unique to older individuals with intellectual disabilities but has also been identified as a broader challenge in the adult population.<\/span><\/p>\n Maguire et al. conducted a systematic review evaluating the methodological quality and psychometric properties of self-report instruments used to measure QoL and subjective wellbeing in adolescents with intellectual disability. They found insufficient evidence to support the use of any self-reported instrument to assess QoL among adults with intellectual disabilities. Among five identified QoL tools, only one (PSI-VS-ID) was considered to have potential for further validation to determine its suitability for adults with intellectual disabilities (29).<\/span><\/p>\n Interestingly, this scoping review did not in-clude any studies using the PSI-VS-ID, suggesting that there is a need for renewed research. For nurses, the absence of validated self-report instruments limits their ability to conduct systematic assessments and tailor interventions based on the individual\u2019s own experiences. This is particularly problematic in the context of ageing, where early identification of decline is essential.<\/span><\/p>\n This scoping review found a lack of validated QoL measurements tools for older individuals with intellectual disabilities. Other studies have found that there is a general lack of validated QoL measurement tools within intellectual disability (30), therefore it may be relevant to consider the relationship between QoL and dementia. It is well-documented that older individuals with intellectual disabilities, particularly those with Down syndrome, have a significantly increased risk of developing dementia (31). This raises the question of whether validated QoL tools designed for individuals with dementia could also be applied to this population.<\/span><\/p>\n In a systematic review, Tsang et al. examined validated QoL tools for older individuals with dementia and intellectual disabilities. They included two studies from 2012 and 2017 and concluded that no self-reported measures have been psychometrically validated or recommended for adults with intellectual disabilities and dementia (32).<\/span><\/p>\n Not surprisingly, and consistent with research in the general population, our findings indicate an association between health and self-reported QoL in older individuals with intellectual disabilities. However, little is known about this relationship, as research including QoL measurements in this population is sparse or non-existent. Given that individuals with intellectual disabilities experience a high prevalence of comorbidities (9,10) and face barriers in accessing healthcare services, efforts must be made to improve healthcare support and preventive care. QoL assessment is essential for planning and evaluating healthcare interventions that are meaningful and valuable to the individual.<\/span><\/p>\n The decision to include studies published between 2000 and 2024 was based on the evolution of quality of life as a multidimensional concept and the development of self-report instruments adapted to individuals with intellectual disabilities in the last two decades. Furthermore, we included studies that did not label their measures explicitly as “QoL” but assessed constructs corresponding to key QoL domains. This inclusive approach aims to reflect the fragmented yet evolving nature of QoL research in this specific population.<\/span><\/p>\n A major limitation of existing research on intellectual disability and QoL, beyond the lack of studies, is the variability in measurement tools. While some studies utilise validated instruments such as the WHOQOL-BREF, EPR (24,25) or ASCOT (26), others rely on study-specific surveys, limiting comparability. Additionally, the majority of studies that include individuals with intellectual disabilities across all age groups rely heavily on proxy reporting, which may introduce bias and fail to reflect the true lived experiences of the individuals.<\/span><\/p>\n Finally, the lack of research specifically focusing on older individuals with intellectual disabilities presents a critical gap. Most studies include a broad age range, making it difficult to determine how ageing uniquely impacts QoL. <\/span>Due to this critical gap in the research, the decision to include studies with a broader age range was made, as long it had subgroups for the older age range.<\/span><\/p>\n Most of the included studies had subgroups of 50+ years old and not 55+ years as this scoping review originally aimed to include. <\/span>This gap has consequences for nursing practice, as age-specific tools or adaptations are needed to capture changes in physical, cognitive, and psychosocial functioning over time. Future research should prioritise studies involving older individuals with intellectual disabilities to increase understanding of their experiences, preferences, and quality of life, and to support the development of evidence-informed services and policies.<\/span><\/p>\n Strengths and limitations Furthermore, the data extraction categories used in this review were narrower in scope than originally planned in the protocol, as several categories, including setting, response rate, instrument modifications, and authors’ recom-mendations were not consistently reported in the included studies and could therefore not be reliably extracted. Data on participants’ exact age, sex distribution above 55 years, and ad-ministration barriers were similarly unavailable in a form suitable for extraction. This limits the granularity of the comparison across studies.<\/span><\/p>\n Additionally, while we only included studies using self-administered QoL measures, we faced challenges in assessing this criterion. It was not always possible to determine whether the QoL instruments were fully self-administered. For example, Sexton et al. included individuals with varying levels of intellectual disability, but the degree of assistance provided during data collection was not clearly reported (38).<\/span><\/p>\n This limits the ability to assess the validity of the self-report component across studies. <\/span>Another limitation is that the included studies were published between 2008 and 2017, with no recent studies meeting the inclusion criteria. This lack of newer research may indi-cate a broader gap in attention toward self-reported QoL among older individuals with intellectual disabilities. The absence of recent studies raises concerns about whether the field is progressing sufficiently to address the evolv-ing needs of this population and suggests a need for renewed research efforts in this area.<\/span><\/p>\n Conclusion Though the research is sparse, healthcare professionals providing care to older individuals with intellectual disabilities should focus on supporting self-report or guided self-report of QoL and not solely rely on proxy reports, to provide quality care and ensure their perspectives are accurately captured. In practice, training professionals in supported self-report methods and considering the systematic use of QoL assessments in care planning may be a relevant step towards improving the quality and responsiveness of services, although this recommendation should be interpreted with caution given the limited evidence base.<\/span><\/p>\n Based on the gaps in knowledge and limi-tations of existing literature, renewed research efforts are warranted. Future research should prioritise the development or adaptation of multidimensional QoL frameworks to reflect the needs of older individuals with intellectual disabilities.<\/span><\/p>\n Ethics approval statement References
\n<\/span>2 <\/span><\/strong>Roskilde University, Department of People and Technology, Roskilde, Denmark
\n<\/span>3 <\/span><\/strong>Centre for Social Work, University College Absalon, Denmark
\n<\/span>4 <\/span><\/strong>Institute for Regional Health Research (IRS), Syddansk University, Denmark<\/span><\/p>\n\n
\n<\/span><\/strong>Background
\n<\/span><\/strong>Assessing quality of life (QoL) in individuals with intellectual disabilities is essential for addressing care needs. However, little research has examined how ageing affects individuals with intellectual disabilities and their perceived quality of life.<\/span>
\nAim
\n<\/span><\/strong>To map existing knowledge about self-reported QoL among older individuals with intellectual disabilities.<\/span>
\nMethod
\n<\/span><\/strong>In this scoping review, we searched PubMed, Embase, C
\nINAHL, Scopus, and PsycINFO.
\n<\/span>Results
\n<\/strong>The five included studies varied in methodology, population, and QoL-assessment tools. No study exclusively focused on individuals over 55 years, and the reporting of self-administration was inconsistent across studies.
\n<\/span>Conclusions
\n<\/span><\/strong>This review highlights a significant gap in self-reported QoL for older individuals with intellectual disabilities. These gaps limit nurses\u2019 ability to incorporate the individual\u2019s own perspectives into assessment, care planning, and evaluation of support and nursing interventions. Future research should focus on developing and validating self-reported QoL instruments to better inform care, policy, and services.<\/span><\/p>\n
\nBaggrund
\n<\/strong>Vurdering af livskvalitet (QoL) hos personer med intellektuelle handicap er afg\u00f8rende for at im\u00f8dekomme plejebehov. Der er dog kun lidt forskning i, hvordan aldring p\u00e5virker personer med intellektuelle handicap og deres opfattelse af livskvalitet.
\nForm\u00e5l
\n<\/strong>Studiets form\u00e5l var at kortl\u00e6gge eksisterende viden om selvrapporteret livskvalitet blandt \u00e6ldre personer med intellektuelle handicap.
\nMetode
\n<\/strong> I dette scoping review s\u00f8gte vi i PubMed, Embase, CINAHL, Scopus og PsycINFO.
\nResultater
\n<\/strong>De fem inkluderede studier varierede i metode, population og v\u00e6rkt\u00f8jer til vurdering af livskvalitet. Ingen unders\u00f8gelser fokuserede udelukkende p\u00e5 personer over 55 \u00e5r, og rapporteringen af \u200b\u200bselvadministration var inkonsistent p\u00e5 tv\u00e6rs af studierne.
\nKonklusion
\n<\/strong>Scoping-reviewet fremh\u00e6ver et betydeligt hul i selvrapporteret livskvalitet for \u00e6ldre personer med intellektuelle handicap. Disse huller begr\u00e6nser sygeplejerskernes evne til at inkorporere individets egne perspektiver i vurdering, plejeplanl\u00e6gning og evaluering af st\u00f8tte- og sygeplejeinterventioner. Fremtidig forskning b\u00f8r fokusere p\u00e5 at udvikle og validere selvrapporterede livskvalitetsinstrumenter for bedre at informere pleje, politik og sundhedstjenester.
\n<\/strong><\/p>\n
\n<\/span><\/strong>Quality of Life measurements are frequently used to inform policy, service planning and resource allocation, particularly relevant for individuals with intellectual disabilities, who face significant and lifelong health disparities, including a lifespan approximately 25 years shorter than the general population (1,2).<\/span> Older individuals with intellectual disabilities experience complex health needs, including early frailty and multimorbidity, both associated with reduced QoL (3\u201312). Despite these vulnerabilities, research on QoL in older individuals with intellectual disabilities remains limited.<\/span><\/p>\n
\n<\/span><\/strong>This scoping review was guided by the framework and five stages described by Arksey and O\u2019Malley (19) and by the updated methodological guidance for conducting scoping reviews (20). The review was reported according to the PRISMA extension for scoping reviews (PRISMA-ScR) checklist (21).<\/span><\/p>\n
\n<\/span><\/strong>The following research question guided the review. \u201cWhat self-reported measures are used to assess QoL in older individuals with intellectual disabilities?\u201d <\/span>The research question was formulated to support improved assessment practices in nursing and related health and social care contexts.<\/span><\/p>\n
\n<\/span><\/strong>In September and October 2024, searches were conducted in the following databases: PubMed, Embase, CINAHL (EBSCO), Scopus and APA PsycINFO (EBSCO). The searches were conducted by an experienced research librarian, in close collaboration with the first and last author. The primary search was conducted dur-ing week 42 of 2024. Filters included human studies, and publication years from 2000 to 2024. The search was repeated on February 24, 2025, to identify if any relevant papers had been published since October 2024.<\/span><\/p>\n
\n<\/span><\/strong>The participant, concept, and context (PCC) tool was used to describe the eligibility criteria (20); see Table 1<\/strong> for concept clarification on intellectual disability, severity of intellectual disability, self-reported QoL, and proxy-reported QoL. In particular, the distinction between self-reported and proxy-reported QoL (Table 1) was central to the Concept element of the PCC framework, as it directly determined which outcome measures were eligible for inclusion.<\/span><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/09\/Table-1.png?resize=720%2C164&quality=80&ssl=1\")
<\/p>\n\n
![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/09\/Figure-1.png?resize=710%2C543&quality=80&ssl=1\")
<\/p>\n
\n<\/span><\/strong>A data extraction form with the following headings was used to chart the data from the included studies: author(s) and year of publication, location, aim(s), participants, severity of intellectual disability, methodology, and used tools to measure quality of life. Compared to the pre-registered protocol, the extraction categories were narrowed to those most relevant to answering the research question, as detailed data on participants’ exact age, sex distribution, and reported administration barriers were not consistently available across the included studies; this deviation is further addressed under Strengths and limitations. Psychometric properties (e.g., validity, reliability) of the QoL instruments were not assessed, in accordance with established scoping review methodology (20).<\/span><\/p>\n
\n<\/span><\/strong>We adopted a narrative approach because of the small number of studies and the heterogeneity of the included studies.<\/span><\/p>\n
\n<\/span>Study selection
\n<\/span><\/strong>Five studies were included in this scoping review, see <\/span>Table 2<\/span><\/strong>. In line with standard PRISMA-ScR practice (21), individual reasons for exclusion were only systematically recorded at the full-text screening stage; reasons for exclusion at the title and abstract stage were not tracked at the level of individual studies. Deviation from the age criteria as described in methods was decided upon due to the limited number of studies focusing solely on older individuals above age 55 and subgroups often starting at age 50.<\/span><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/09\/Table-2.png?resize=719%2C918&quality=80&ssl=1\")
<\/p>\n
\n<\/span><\/strong>The included studies were all from Europe and published between 2015 and 2017. Two were located in Portugal (24,25), two in the United Kingdom (UK) (26,27) and one in Ireland (28). Table 2 provides an overview of the included studies, summarising their aims, sample characteristics, methods, and key findings about QoL tools for self-report.<\/span><\/p>\n![\"\"](\"https:\/\/i0.wp.com\/sygeplejevidenskab.dk\/wp-content\/uploads\/2026\/09\/Table-3.png?resize=721%2C847&quality=80&ssl=1\")
<\/p>\n
\n<\/span><\/strong>The included studies were predominantly cross-sectional survey studies(24\u201327), with one comparative analysis (28). All, but one study, assessed self-reported QoL using standardised instruments, though some did not explicitly state whether assessments were exclusively self-administered. The Emerson and Hatton study was included based on its use of a self-designed survey measuring subjective well-being and environmental conditions across a broad life domain spectrum and its inclusion of participants aged 55 and above (27).<\/span> The study setting covered various living settings, including supported housing, care institutions, and community-based settings.<\/span><\/p>\n
\n<\/span><\/strong>The age or sex of the study participants cannot be reported precisely. None of the studies focused exclusively on individuals aged 55+. Instead, they included older individuals as small subpopulations within broader age groups. In our inclusion criteria, we set the age threshold at 55 years and above, drawing inspiration from the literature, including the study by Ahlstr\u00f6m et al. (8). <\/span>However, it became clear during the screening phase that this threshold was too high and would result in the omission of the majority of studies, as four of the included studies defined subgroups starting at 50 years and above, without providing further specification of age ranges (24\u201328).<\/span><\/p>\n
\n<\/span><\/strong>An association between physical health and QoL was evident across two studies. Rand & Malley (2017) found that self-rated health, anxiety, depression, and suitability of living environment were significant predictors of QoL (26). \u200bSimilarly, Sim\u00f5es & Santos (2016) reported that individuals with intellectual disability had lower QoL scores than the general population, particularly in physical well-being and emotional domains \u200b(24).<\/span><\/p>\n
\n<\/span><\/strong>Living conditions and social inclusion were also linked to QoL outcomes. Sexton et al. found that individuals with intellectual disabilities had lower self-determination scores compared to the general population, with limited autonomy associated with reduced QoL (28). <\/span>Sim\u00f5es et al. reported that individuals in community-based settings had higher QoL scores than those in institutional care, highlighting the role of social participation and independent living (25)\u200b.<\/span><\/p>\n
\n<\/span><\/strong>As seen in <\/span>Table 3<\/span>, different QoL-tools were used in the included studies, and some used questionnaires not relating directly to QoL but to mental health.<\/span><\/p>\n
\n<\/span><\/strong>A major limitation is the scarcity of data on individuals strictly aged 55+. To maximise the available evidence, we deviated from our original protocol and included studies where older individuals were a subpopulation within a broader age range, sometimes including individuals under 50 years. This compromises the specificity of our findings and should be considered when interpreting the results.<\/span><\/p>\n
\n<\/span><\/strong>This scoping review identified five studies assessing self-reported QoL in older individuals with intellectual disabilities, using a range of validated and non-validated instruments, none of which were developed or validated specifically for this population. This scoping review highlights significant gaps in the meas-urements of self-reported QoL among older individuals with intellectual disability and a lack of standardized and validated QoL-tools.<\/span><\/p>\n
\n<\/span><\/strong>This study is a scoping review of publicly avail-able literature and did not require ethical approval. However, it was conducted in accordance with institutional guidelines on research ethics. Declaration of generative AI and AI-assisted technologies in the manuscript preparation process. During the preparation of this work the authors used GhatGBT 4.0 in order to proofread the paper. After using this tool, the authors reviewed and edited the content as needed and take full responsibility for the content of the published article.<\/span><\/p>\n
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\n<\/span>2.<\/span><\/strong> Ager A. \u201cQuality of life\u201d assessment in critical context. Journal of Applied Research in Intellectual Disabilities. 2002 Dec 1;15(4):369\u201376. <\/span>doi:10.1046\/J.1468-3148.2002.00133.X<\/a>
\n3.<\/span><\/strong> Grohmann D, Wellsted D, Mengoni SE. Definition, assessment and management of frailty for people with intellectual disabilities: A scoping review. Journal of Applied Research in Intellectual Disabilities. 2024 May 1;37(3):e13219. <\/span>doi:10.1111\/JAR.13219.<\/a> PMID: 38485891.
\n<\/span>4.<\/span><\/strong> World Health Organization. Intellectual disabilities in International statistical classification of diseases and related health problems <\/span>(10th ed.). 2016.<\/a>
\n5.<\/span><\/strong> des Portes V. Intellectual disability. Handb Clin Neurol. 2020 Jan 1;174:113\u201326. <\/span>doi:10.1016\/B978-0-444-64148-9.00009.<\/a> PMID: 32977872.