Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol.

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While this is a positive development, it may mean living with age-related morbidities which require specialist care to meet needs. While most people with intellectual disability would prefer to remain living in their current homes, if extra supports are not available, they may experience a need to move into residential type settings such as nursing homes. This is usually related to current funding systems not being responsive to developing age-related needs of people with intellectual disability. For example, if a person had been living independently but they are developing mobility issues, there is often no extra budget for staff to assist them. This can result in the person having to move to a different setting to have their needs met. However, such a move may impact on quality of life, wellbeing and personal dignity. This study will build a picture of the future needs of people who are ageing with intellectual disability, what extra supports they require, and the costs of those supports. This will be completed using two secondary data sources– the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) and the National Ability Support System (NASS), as well as collecting primary qualitative data to understand perspectives and experiences. The overall aim of the study is to provide economic evidence on the needs, resources and outcomes associated with supporting people aged ≥40 with intellectual disability to age in place. Data from 15 years of IDS-TILDA, the NASS and Health Service Executive costing calculations are available. Using a variety of analytical methods, levels of support will be defined alongside potential economic and policy scenarios. This research will provide evidence to inform policy such that more people with intellectual disability can continue to age at home rather than enter nursing homes." } { "@context": "http://schema.org", "@type": "BreadcrumbList", "itemListElement": [ { "@type": "ListItem", "position": "1", "item": { "@id": "https://hrbopenresearch.org/", "name": "Home" } }, { "@type": "ListItem", "position": "2", "item": { "@id": "https://hrbopenresearch.org/browse/articles", "name": "Browse" } }, { "@type": "ListItem", "position": "3", "item": { "@id": "https://hrbopenresearch.org/articles/8-13/v1", "name": "Addressing Age-Related Complexity in Intellectual Disability (AARC-ID):..." } } ] } Home Browse Addressing Age-Related Complexity in Intellectual Disability (AARC-ID):... ALL Metrics - Views Downloads Get PDF Get XML Cite How to cite this article Gorman A, O'Brien T, May P et al. Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] . HRB Open Res 2025, 8 :13 ( https://doi.org/10.12688/hrbopenres.14019.1 ) NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article. Close Copy Citation Details Export Export Citation Sciwheel EndNote Ref. Manager Bibtex ProCite Sente EXPORT Select a format first Track Share ▬ ✚ Study Protocol Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] Ashleigh Gorman https://orcid.org/0000-0001-8524-2399 1 , Tony O'Brien 2 , Peter May 3 , [...] Irina Kinchin 4 , Philip McCallion https://orcid.org/0000-0001-5129-6399 5 , Mary McCarron 1 , Caitriona Ryan 1 , Helena Connors 6 , Sarah Craig 7 , Louise Daly 8 , Alison Harnett 6 , Fintan Sheerin https://orcid.org/0000-0002-4272-7756 9 , Mei Lin Yap 1 , Samantha Smith https://orcid.org/0000-0002-4513-5916 4 , Mary-Ann O'Donovan https://orcid.org/0000-0002-3378-5305 10 , Martin McMahon https://orcid.org/0000-0002-3340-9537 1 Ashleigh Gorman https://orcid.org/0000-0001-8524-2399 1 , Tony O'Brien 2 , [...] Peter May 3 , Irina Kinchin 4 , Philip McCallion https://orcid.org/0000-0001-5129-6399 5 , Mary McCarron 1 , Caitriona Ryan 1 , Helena Connors 6 , Sarah Craig 7 , Louise Daly 8 , Alison Harnett 6 , Fintan Sheerin https://orcid.org/0000-0002-4272-7756 9 , Mei Lin Yap 1 , Samantha Smith https://orcid.org/0000-0002-4513-5916 4 , Mary-Ann O'Donovan https://orcid.org/0000-0002-3378-5305 10 , Martin McMahon https://orcid.org/0000-0002-3340-9537 1 PUBLISHED 24 Jan 2025 Author details Author details 1 Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin School of Nursing and Midwifery, Dublin, Ireland 2 National Disability Operations, Health Service Executive, Dublin, Ireland 3 King's College London Florence Nightingale Faculty of Nursing Midwifery & Palliative Care, London, England, UK 4 Centre for Health Policy and Management, Trinity College Dublin School of Medicine, Dublin, Ireland 5 Temple University School of Social Work, Philadelphia, Pennsylvania, USA 6 National Federation of Voluntary Service Providers, Galway, Ireland 7 Health Research Board, Dublin, Ireland 8 Trinity Centre for Practice and Healthcare Innovation, Trinity College Dublin School of Nursing and Midwifery, Dublin, Ireland 9 School of Nursing, Maynooth University, Maynooth, Ireland 10 Centre for Disability Studies, The University of Sydney, Sydney, New South Wales, Australia Ashleigh Gorman Roles: Data Curation, Formal Analysis, Investigation, Methodology, Project Administration, Visualization, Writing – Original Draft Preparation Tony O'Brien Roles: Conceptualization, Formal Analysis, Funding Acquisition, Methodology, Resources, Writing – Review & Editing Peter May Roles: Conceptualization, Funding Acquisition, Methodology, Validation, Writing – Review & Editing Irina Kinchin Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Investigation, Methodology, Visualization, Writing – Review & Editing Philip McCallion Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Mary McCarron Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Caitriona Ryan Roles: Conceptualization, Data Curation, Funding Acquisition, Methodology, Writing – Review & Editing Helena Connors Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Sarah Craig Roles: Conceptualization, Data Curation, Funding Acquisition, Methodology, Writing – Review & Editing Louise Daly Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Methodology, Writing – Review & Editing Alison Harnett Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Fintan Sheerin Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Methodology, Writing – Review & Editing Mei Lin Yap Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Samantha Smith Roles: Conceptualization, Funding Acquisition, Methodology, Resources, Writing – Review & Editing Mary-Ann O'Donovan Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing Martin McMahon Roles: Data Curation, Formal Analysis, Investigation, Methodology, Supervision, Validation, Writing – Review & Editing OPEN PEER REVIEW DETAILS REVIEWER STATUS Abstract People with intellectual disability are living longer. While this is a positive development, it may mean living with age-related morbidities which require specialist care to meet needs. While most people with intellectual disability would prefer to remain living in their current homes, if extra supports are not available, they may experience a need to move into residential type settings such as nursing homes. This is usually related to current funding systems not being responsive to developing age-related needs of people with intellectual disability. For example, if a person had been living independently but they are developing mobility issues, there is often no extra budget for staff to assist them. This can result in the person having to move to a different setting to have their needs met. However, such a move may impact on quality of life, wellbeing and personal dignity. This study will build a picture of the future needs of people who are ageing with intellectual disability, what extra supports they require, and the costs of those supports. This will be completed using two secondary data sources– the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) and the National Ability Support System (NASS), as well as collecting primary qualitative data to understand perspectives and experiences. The overall aim of the study is to provide economic evidence on the needs, resources and outcomes associated with supporting people aged ≥40 with intellectual disability to age in place. Data from 15 years of IDS-TILDA, the NASS and Health Service Executive costing calculations are available. Using a variety of analytical methods, levels of support will be defined alongside potential economic and policy scenarios. This research will provide evidence to inform policy such that more people with intellectual disability can continue to age at home rather than enter nursing homes. READ ALL READ LESS Keywords Intellectual disability, population dynamics, ageing, housing for older adults, cost analysis, Markov modelling, health economics Corresponding Author(s) Ashleigh Gorman ( [email protected] ) Close Corresponding author: Ashleigh Gorman Competing interests: Co-authors AH and HC are employed by the National Federation of Voluntary Service Providers, who have provided some funding to this study. Their involvement will not impact the study findings. Co-author SC is employed by the Health Research Board, who have provided funding to this study. Their involvement will not impact the study findings. Grant information: This study is funded by the Health Research Board Applied Partnership Awards [APA-2022-023] andin collaboration with the National Federation of Voluntary Service Providers. Copyright: © 2025 Gorman A et al . This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. How to cite: Gorman A, O'Brien T, May P et al. Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] . HRB Open Res 2025, 8 :13 ( https://doi.org/10.12688/hrbopenres.14019.1 ) First published: 24 Jan 2025, 8 :13 ( https://doi.org/10.12688/hrbopenres.14019.1 ) Latest published: 24 Jan 2025, 8 :13 ( https://doi.org/10.12688/hrbopenres.14019.1 ) 1.0 Introduction Ireland has a high reliance on the voluntary sector to meet the care and support needs of people with intellectual disability ( Doyle et al. , 2022 ). Decongregation in Ireland is underpinned by a rights-based approach in government policy and international best practice ( The Housing Agency, 2022 ; United Nations, 2006 ). The Time to Move On from Congregated Settings report ( Health Service Executive, 2011 ) supports people with intellectual disability to live in their preferred living situation, for example supported to live independently or in the family home. However, there is a lack of planning and funding for the needs of people with intellectual disability as they age ( Sheerin et al. , 2023 ) and the unmet needs pose a significant emerging challenge for the Government and services. For example, it is estimated 800–2300 people have documented needs for residential care but there are not adequate residential campus places to support them ( Department of Health, 2022 ). As of July 2023, there are 8330 residential campus placements ( Health Service Executive, 2023 ). There are also limited services to maintain people in independent or family homes when their needs for support increase. In addition to support and availability of appropriate living environments, people with intellectual disability are living longer and this brings increasingly complex needs ( McCarron et al. , 2023 ). Family living is preferred by many; however, increasingly family members are unable to provide necessary care ( Brennan et al. , 2023 ). A report by the National Federation of Voluntary Service Providers in Ireland [ NFVSP (2022) ], identified that there are 1500 people with intellectual disability living with primary carers who are over 70 years old, an 18% increase since 2019. Current policy, such as the Review of Disability Social Care Demand and Capacity Requirements to 2032 ( Department of Health, 2022 ), does not make allowance for complexity associated with increasing age (for example dementia, multimorbidity or functional limitations, frailty) nor the associated costs of staff, carer support, environmental modifications and additional services. Additionally, the current funding model does not provide a formal funding allocation in the Health Service Executive’s (HSE) National Service Plan (NSP) to address growing needs associated with age-related complexity for people with intellectual disability to continue in their current location, although a limited number of new residential campus places have been funded in recent years ( Health Service Executive, 2022 ). However, research has shown that community living provides improved quality of life in comparison to congregated or campus-based settings ( McCarron et al. , 2018 ) and therefore living in the community is preferable. There are, however, formal funding mechanisms for residential supports in a new location – both on a planned and “emergency” basis. In the period 2020 to 2022, the HSE’s NSP provided a funding allocation for 100 new “emergency placements”, 50 placements “responding to priority need” and 134 “planned residential places” ( Health Service Executive, 2020 ; Health Service Executive, 2021 a ; Health Service Executive, 2022 ). Insufficient supports and places in a constrained funding environment potentially create an incentive away from ageing in place and towards moving a person with intellectual disability from (semi-)independent living to a nursing home for the general population, as noted in the 2021 Ombudsman report ‘ Wasted Lives – Time for a better future for younger people in Nursing Homes’ ( Ombudsman, 2021 ) as well as the National Housing Strategy for Disabled People 2022–2027 ( Government of Ireland, 2022 ). This is well-documented as inappropriate as the unique needs of this population are not understood, and poorly met in the current system, and thus results in a return to institutional care ( Ne’eman et al. , 2022 ). The Department of Health’s projected future needs for those with an intellectual disability, do not take account of how the changing age distribution will affect prevalence of dementia, multimorbidity, psychiatric illness and functional limitations ( Department of Health, 2022 ). Nor do they take account of the declining capacity of family carers to provide care. Since individual complexity and availability of unpaid care are key determinants of formal care need and associated costs, this is a critical evidence gap. Meeting the HSE’s aims to “reimagine disability services” as person-centred ( Health Service Executive, 2021 b :8 ; Health Service Executive, 2022:25 ) and “develop and implement a sustainable disability residential funding model” ( Health Service Executive, 2022:21 ) requires new thinking on the types of services to be funded. A recent report from the National Disability Authority called for a new funding model that was responsive, dynamic and aligned with the future and developing needs of people with intellectual disability as they age ( Sheerin et al. , 2023 ). Consequently, the AARC-ID project aims to conduct a comprehensive economic analysis of support models for aging individuals with intellectual disabilities, projecting population-level needs and costs over a ten-year period (2024–2034). This research seeks to evaluate the efficiency and effectiveness of various support approaches, considering different funding scenarios and levels of support needs. By integrating quantitative economic analysis with qualitative stakeholder input, including the perspectives of older people with intellectual disabilities, their families, carers, and service providers, the study aims to inform evidence-based policy-making and service provision. Ultimately, this research strives to optimize resource allocation and improve the quality of care for aging individuals with intellectual disabilities – to support the goal of ensuring their needs are met in a cost-effective and person-centred manner. To achieve this aim, the project is structured into five distinct work packages that serve as a roadmap for the research process. These work packages will systematically address population-level support needs estimation, cost-outcome analysis of different support models, projection of costs and outcomes under various funding scenarios, stakeholder perspective elicitation, and continuous participatory involvement of people with intellectual disabilities and key stakeholders throughout the study. Work package 1 (WP1): Population-level support need estimation, approximating the total volume of support need at the population level for 2024–2034. Work package 2 (WP2): Cost-outcome analysis of support models, estimating the costs and outcomes associated with different models of support for individuals with varying support needs. Work package 3 (WP3): Scenario-based population-level cost projections, estimating the costs and outcomes associated with meeting population-level needs from 2024–2034 under different funding scenarios for models of support. Work package 4 (WP4): Stakeholder perspective, eliciting the perspectives of older people with intellectual disability, their families and caregivers, and service providers on the different models of support, and identifying additional needed changes to the mix of available services. Work package 5 (WP5): Public and patient involvement and dissemination, involving people with intellectual disability and key stakeholders in a beneficial and informative manner from inception to dissemination of the study. 2.0 Methods This study uses health, demographics, and family carers data from five waves of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) study, as well as data from the National Ability Support System (NASS). A qualitative component will be employed through semi-structured interviews and focus groups. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines ( von Elm et al. , 2008 ) and the Consolidated Criteria for Reporting Qualitative research [COREQ ( Tong et al. , 2007 )] will be followed where appropriate. 2.1 Population WP1–3: IDS-TILDA provides a sample of older adults (aged ≥40 years) with intellectual disability to establish influences on ageing and health in this cohort. To date, there have been five data collection waves since 2009. IDS-TILDA has shown successful retention of participants, with 87.1% of surviving Wave 1 participants retained ( McCarron et al. , 2022 ), attributed to a personal, flexible, and innovative approach to the conduct of this longitudinal study. At Wave 4, the sample was refreshed to replace participants in the 40–49 years category who were, at that stage, ≥50 years. The sample was replenished again at Wave 5, with 141 participants recruited, totalling 762 at wave 5. Table 1 provides the number of participants at each wave. Table 1. IDS-TILDA participants at each Wave. IDS-TILDA Wave sample Number of participants Wave 1 753 Wave 2 708 Wave 3 609 Wave 4 739 Wave 5 762 WP4: We will recruit older adults with intellectual disability, family members, caregivers and service providers through services as well as using a social media campaign. Recruitment details for this are provided in section 2.3 below ‘ Work package 4 – To elicit the perspectives of older people with intellectual disability, their families and caregivers, and service providers on the different models of support and changes needed to the mix of available services.’ 2.2 Sources of data This study uses data from multiple sources – IDS-TILDA, NASS, previous calculated costs from the HSE Disability Strategy and Planning division as well as qualitive data collected by the research team. A summary table of data sources is provided below, indicating the relevant work package the data relates to, see Table 2 . Table 2. Data sources summary. Data category Source Work package Numbers of adults aged ≥40 by intellectual disability level, age, sex and living arrangements NASS 1 Levels of support Determined from existing data in IDS-TILDA 1 Unit costs of different types of community group homes for people with intellectual disability National Disability Authority, 2021 2 Standardised set of healthcare costs for general population, including nursing home residence Smith et al. , 2021 2 Perspectives of adults with intellectual disability, family members or caregivers, and service providers Collected by research team via semi-structured individual interviews or focus groups 4 IDS-TILDA collects data on a rich array of individual characteristics and activities including demographics (for example, age, sex, early life experience), residence, health (for example, diagnoses, cognition, functional limitations) and health care use. This is completed via a pre-interview questionnaire (PIQ) and a face-to-face computer -assisted personal interview (CAPI). The PIQ is sent to each participant a minimum of one week prior to the CAPI; questions asked in the PIQ may require respondents to check records and this ensures they have time to do so. The PIQ is collected by the field researcher when they conduct the CAPI. All field researchers receive full training prior to beginning data collection. IDS-TILDA facilitates for different levels of intellectual disability with different interview styles employed: respondent only interview conducted directly with the individual, interview with the person supported by a family member or caregiver, or, a proxy interview with a family member or caregiver very familiar with the person [must know the participant for a minimum of 6 months ( McCarron et al. , 2022 )]. NASS is an amalgamation of the National Intellectual Disability Database (NIDD) and the National Phsyical and Sensory Disability Database (NPSDD). NASS is a national database that collects information on HSE funded disability services, received by people who have a intellectual disability, developmental delay, physical, sensory, neurological, learning, autism spectrum or speech/language disability ( Casey et al. , 2019 ). It collects a core set of information for each person, including demographic variables (such as age, gender, level of disability, present living arrangements) and the support services they currently receive (such as residential campus accommodation, day services, respite breaks). Participants are those with an intellectual disability and utilising, or in need of, a specialist service now or in the next five years ( Dodd et al. , 2010 ). The data is used for management of services. Existing costing data from the National Disability Authority (2021) derived from observational field research data and surveys to calculate staffing and associated pay costs, published in ‘Moving In, Moving On’ will be utilised. Previous healthcare costs calculated by co-author SS ( Smith et al. , 2021 ) will be used in conjunction with National Disability Authority estimated costing. Co-author, TO’B, has previously completed multiple costing exercises within the HSE Disability and Strategy and Planning and will support with estimated costing data, where necessary. This may include previous costing research on total cost per residential campus placement between service provider and HSE commissioning area ( Cullinan et al. , 2024 ). 2.3 Work packages This study includes five work packages, four individual and one overlapping work package, ensuring that the aim stated above is achieved. The five work packages are presented below. Work package 1 – Estimate the total volume of support need at the population level, 2024–2034 Objectives 1.1 – Estimate the number of people in Ireland in 2024 aged ≥40, with intellectual disability, and living (semi-)independently, in a family home, or community group home. 1.2 - Estimate the associated support needs of this population in 2024 taking into account age-related complexity 1.3 - Estimate the total volume of support need at the population level to 2034. Study design To achieve objective 1.1, a descriptive secondary data analysis will be conducted using the NASS. This will provide information on the numbers of adults aged ≥40 by intellectual disability level, age, sex and living arrangements. This information will then be combined with analysis of IDS-TILDA data, to meet objective 1.2. Data from all five waves of IDS-TILDA will be explored and the participants reporting residence as independent or community group home will be extracted (see Table 3 for all categories of residence within the AARC-ID study). Demographics including age, sex and complexity (such as neurological conditions, physical health, mental health, behaviours of concern, functional limitations) of this cohort will be investigated. Levels of support will be defined, and each participant assigned a level of support. The levels of support were defined using a modified version of a pre-established framework on support ( Cullinan et al. , 2024 ), to be more specific to the population of people with intellectual disability and to correspond with available data from IDS-TILDA. See Appendix 1 for modified level of support framework. These defined levels of support may be reviewed in light of accessing IDS-TILDA data. Residence categories will include different residence types, as presented in Table 3 below. Table 3. Residence categories. AARC-ID Residence category Residence type includes: Family home At home with both parents; at home with one parent; at home with sibling; at home with other relative Independently or semi-independently Living independently or semi-independently Community group home 5 or 7 day community group [clustered or dispersed setting (up to 9 people living in the same residence)] Residential campus 5 or 7 day residential campus setting (10 or more people living in the same residence); intensive placement (for challenging behaviour); intensive placement (for profound or multiple disability) Nursing home Nursing home with the general population Other Other forms of residence types identified in IDS-TILDA participants Please note that residence types comes from residential options provided to IDS-TILDA participants. Participants, or their proxy, self-select the residence type they believe most strongly represents their current living situation, at the time of interview. The research team is aware that there may be cross over between some categories. For example, a person with intellectual disability can live semi-independently but also in the family home. For participants who have participated in multiple waves, they will be assigned a level of support based on their information provided at each timepoint. Therefore, the level of support assigned to a participant may have increased from the previous wave. In this study, we are defining level of intellectual disability as non-modifiable and level of support as non-reversible. An individual can transition from any support level to any higher support level, providing that this is possible via a change in health circumstances; transitions requiring a change in level of intellectual disability are considered impossible. Population weights will be used to adjust for differences in age, sex and level of intellectual disability between IDS-TILDA participants and the population sample (generated from the NASS data). The prevalences of complexity and support need will be combined with the NASS data to estimate the total volume of support need at the population level in 2024, thus completing objective 1.2. To achieve objective 1.3, population simulation method will be utilised to project support needs among future population with intellectual disability in Ireland to 2034. Three files will be created – stock file, transitions file and a replenish file. The first will be a stock file aggregating the baseline cohort of all people in the population of interest in 2024 by sex and age band (40–49years, 50–59years, 60–69years, 70+). This will comprise of the data gathered as part of objective 1.2. Secondly, a transitions file representing the probability of individuals within each sex-and-age band having growing support needs through changing health in a one-year cycle will be documented. This will be derived from IDS-TILDA data, with adjustments for time interviews between waves to inform one-year incidence rates (IDS-TILDA waves are every three years). Markov models will be utilised to estimate the probabilities of moving between levels of support need and the probability of mortality, conditional on observed predictors: age, sex, health, and disability. Thirdly, the replenishing file will be generated by combining NASS data on people aged under 40 and IDS TILDA data on the distribution of support needs among 40-year-olds. Sensitivity analyses using high and low confidence interval bands, will be conducted on transition probabilities and to cover for the estimated number of the population at the level of need due to sampling variation in IDS-TILDA. Where possible, we will externally validate IDS-TILDA transition probabilities against NASS data. WP 1 has begun and findings from this will feed into work package 2. Ethical approval from Faculty Research Ethics Committee in the authors institution is already in place regarding IDS-TILDA data. Aggregated data will be received from NASS and therefore ethical approval is not required. Necessary data is being requested from IDS-TILDA and NASS. Output This work package will be submitted for peer review in an open access journal. Where possible, and in line with General Data Protection Regulations 2018 [GDPR ( GDPR, 2018 )], the three data files (stock, transition and replenish) and simulation data will be made available for reviewers and readers to ensure transparency and reproducibility. An accessible easy read of the finalised peer review article will be produced. Results may be presented at academic conference. Work package 2 – Estimate the costs and outcomes associated with different models of support for those with different support needs, at micro level Objectives 2.1 – Define the four models of transition to be costed 2.2 – Estimate the costs associated with meeting different levels of support need in each of the models 2.3 – Estimate the quality of life outcomes associated with each of the models Study design We will collaborate with the NFVSP, HSE Office of Disability Strategy and Planning and HSE Home Support Reform Unit to define four models of transition. Initially, these are i ) status quo, ii ) ageing in place with additional supports (for example, home care), iii ) residence in a specialised setting with intellectual disability appropriate expertise, iv ) residence in a nursing home with the general population. Specific personnel inputs required, particularly in ii and iii , will be derived from expert knowledge. Additionally, best practice residential guidance for people with intellectual disability who develop dementia (National Intellectual Disability Memory Service Support Materials) will be consulted during this process. This will complete objective 2.1. To achieve objective 2.2, we will utilise existing calculated unit costs. In existence are estimated unit costs of different types of community group homes for people with intellectual disability ( National Disability Authority, 2021 ) and standardised estimated health care costs for general population [including nursing home residence ( Smith et al., 2021 )]. The HSE Disability Strategy and Planning division will provide access to their existing calculated costings. Consideration will be given to the most appropriate methodology for identifying and costing inflationary costs. The levels of support need in each of the models will be amended based on findings from objectives 1 and 2.1. Completion of objective 2.3 will be achieved through secondary analysis of IDS-TILDA data. For this specific objective, residence will be categorised as family home, (semi-)independently, community group home, residential campus, nursing home, or other. Multivariate logistic regression will be conducted to investigate the association between quality of life and place of residence. Where possible, we will derive causal estimates of relationships using data from participants who have moved between different residential settings and change of quality of life, if any. Essentially, we aim to answer if a participant moved place of residence, did this impact quality of life? This will be in comparison to participants who did not report a change in place of residence between waves. Additionally, we will update the systematic review of quality of life in decongregation for people with intellectual disability, led by team member MMcC ( McCarron et al., 2018 ). Output The models, costing and quality of life outcomes feed into work package 3. A publication from work package 2 is anticipated; an updated systematic evidence review on quality of life outcomes and costs associated with moving from congregated settings to community living arrangements for people with intellectual disability will be published in a open access peer reviewed journal. Work package 3 – Estimate the costs and outcomes associated with meeting population- level needs to 2034 under different funding scenarios for the models of transition Objectives 3.1 – Define the policy/funding scenarios that will be compared – status quo including limited additional funding for ageing in place, and alternatives to the status quo 3.2 – Estimate the costs and outcomes, and where possible, the cost-effectiveness of the different policy/funding scenarios, taking into account declining availability of unpaid family care, at the population level Study design Within objective 3.1, we will define the scenarios. At this initial stage we expect the status quo to include limited new resources for ageing in place and will assume no new places created in context-appropriate settings (either group homes or specialist settings). Costs and outcomes under the status quo will be compared to different approaches. These include i) providing sufficient resources for people to remain in their current place of residence and ii) developing new services that meet low-support needs in the current home and high-support needs in a specialist setting. This objective will be achieved through collaboration with NFVSP and HSE to clarify various budget scenarios. Population-level costs and outcomes associated with each scenario will be calculated using data previously gathered in work packages 1 and 2. Different budget levels between two extremes will be considered including the quantifying of trade-offs regarding spending in insufficient budget. For example, if only half of the funds are available, we will investigate the trade-off of supporting a relatively large number of low-support need people with intellectual disability or a relatively low number of high-support need people with intellectual disability. This objective will produce budget scenarios with clear rules on available funding as well as options for prioritising insufficient funding. To complete objective 3.2, IDS-TILDA participants living in family homes or community group homes will be modelled in a two-step process. Firstly, a simulated model will calculate the change in support need between year t and t+1 . Here, we will use the data from WP 1 to model distribution of support needs in 2024, transition probabilities and the replenishing cohorts for living in family home or community group homes separately. For future years, this will be calculated for all living situations. Secondly, living situation at each year will be determined, using the decision trees identified in Appendix 2 and Appendix 3 . The costs of the different scenarios will be estimated by combining unit costs from WP 2 with the estimated numbers of population within each group. Quality of life outcomes previously calculated as objective 2.3 will be included in the analysis here. To limit the number of possible transitions, and to improve study feasibility, policy scenarios will be considered fixed and specialist setting considered absorbed ( i.e., once a person moves in, they do not move out). However, support need and mortality within these specialist settings will be monitored as this will impact costs and the availability of spaces. Sensitivity analyses will be conducted to account for possible variation in unit cost estimates. Within this work package, availability of home care supports and community group home places for different levels of need are determined by policy scenario. Capacity in specialist settings may become available if a person dies under the status quo. Capacity in nursing homes will be considered as infinite as people with intellectual disability are a relatively small population and if a suitable setting is not available then typically, they will be placed in a nursing home. Output This work package will submitted for peer review in an open access journal. Where possible, and in line with GDPR, costs, quality of life scores, transitions and mortality figures will be made available for editors, reviews and readers to ensure transparency and reproducibility. An accessible easy read of the finalised peer review article will be produced. Results may be presented at academic conference. Work package 4 – To elicit the perspectives of older people with intellectual disability, their families and caregivers, and service providers on the different models of support and changes needed to the mix of available services. Objectives 4.1 – to conduct individual interviews or focus groups with older people with intellectual disability 4.2 - to conduct individual interviews or focus groups with family members and/or caregivers to people with intellectual disability 4.3 – to conduct individual interviews or focus group interviews with service providers Study design This work package will employ a descriptive qualitative approach, given its fidelity to participant experience, as well as its acknowledged simplicity and flexibility ( Doyle et al. , 2020 ; Kim et al. , 2017 ). The Consolidated Criteria for Reporting Qualitative Studies (COREQ) reporting guidelines ( Tong et al. , 2007 ) will be utilised here. A purposive sampling strategy will be employed to recruit older adults with intellectual disability, family members/caregivers and service providers. Consideration will be given within the purposive sampling strategy to ensure that the experience of people who have intellectual disability and autism is considered. Recruitment of participants in this work package will be conducted via at least two service providers and using social media. We anticipate having at least one service provider classified under Section 38 and one service provider under Section 39 of the Health Act 2004 ( Government of Ireland, 2004 ). IDS-TILDA has established relationships with service providers and this will be utilised to support recruitment to the study. Application for ethical approval from level 3 ethics committee in the author’s institution has been submitted. Ethical approval from each of the service providers will be sought. Each service provider will appoint a gatekeeper who will distribute study information to potential participants. This will include an invitation letter, participant information leaflet and consent form; accessible easy read format of these will be distributed to adults with intellectual disability. The Trinity Centre for Ageing and Intellectual Disability (TCAID) will advertise this study on their social media channels (LinkedIn, X formerly Twitter) as will the NFVSP. This recruitment method will be used to recruit family members or caregivers to adults with intellectual disability and service providers. Those interested will be asked to contact the researchers who will provide study information (invitation letter, participant information leaflet and consent form). The HSE National Clinical Programme for People with Disability (NCPPD) will also advertise the study via their networks. As is common in qualitative research, data adequacy will determine sample size. It is estimated that 10–15 individual interviews will be sufficient for this ( Constantinou et al. , 2017 ; Hennink & Kaiser, 2022 ). To achieve thematic saturation in focus groups, it is anticipated that three to eight focus groups is sufficient ( Hennink & Kaiser, 2022 ; Namey et al. , 2016 ). However, the characteristics of the focus group will be important in determining the number of participants within the focus group. For example, a focus group with people with intellectual disability may need to be smaller than a focus group with people who do not have intellectual disability. It is acknowledged that sample size in qualitative research is a contested issue ( Sebele-Mpofu & Serpa, 2020 ) and therefore the number of interviews (individual or focus group) will be reviewed as data collection progresses within this work package in line with the study and work package aim ( Young & Casey, 2019 ). Individual interviews and/or focus groups will be conducted at a time and place convenient to both the interviewer and the interviewee(s). The research team will be flexible and make adjustments to facilitate participation of people with intellectual disability. Photo/object elicitation may be used where appropriate in addition to the interview topic guide, when interviewing people with an intellectual disability. A support person may be present if requested by a participant with intellectual disability. This will be explained in the participant information leaflet. Focus groups and interviews will be conducted face-to-face (likely at the location of the service provider) or online. Face-to-face interviews will be recorded using a digital audio recorder. As soon as possible after the interview has been completed, the recording will be uploaded to the secure study folder and deleted from the digital audio recorder. Interviews conducted online will be held via Zoom and recorded using the ‘record’ function; only the audio file will be saved. As soon as possible after the interview has been completed, the audio recording will be uploaded to the secure study folder. Interviews will be transcribed verbatim , however, any identifying factors (such as participants’ names or names of services) will be pseudonymised. Transcripts will be transcribed by a transcription company who has existing contractual agreements with Trinity College Dublin. Recordings will be securely transferred to them to transcribe, as will be outlined in the agreement. As soon as the researcher has confirmed the accuracy of the transcription, the original recording will be deleted. Transcripts will be pseudonymised to allow for potential secondary analysis of transcripts in future related projects. This will be outlined in the participant information leaflet and participants will agree to this in the consent form. A key code, identifying the transcript to the participant will be stored in a password protected file in the study folder on the secure TCAID server. This folder will only be accessed by key study members (MM and AG) and key members of TCAID including centre directors, manager and data management team. The key code, along with pseudonymised transcripts and consent forms, will be securely stored for 5 years in line with current GDPR and Health Research Regulations 2018. All participants will receive a certificate of participation. The reflexive thematic analysis approach of Braun and Clarke ( 2006 , 2022 ) will be used to analyse transcripts. This includes six phases as shown in Table 4 . This approach views researcher subjectivity as a resource, analysis as an interpretive practice and meaning as unfixed ( Braun & Clarke, 2023 ). Applying reflexive thematic analysis enables the recognition of patterned meaning across a study dataset with reference to the stated study aim ( Braun & Clarke, 2021 ). Table 4. Six phases of Braun and Clarke ( 2006 , 2022 ) analytical approach. Phase Description 1 Familiarisation with the dataset Focus on closeness to, and familiarity, with the data alongside critical engagement. 2 Coding The smallest unit of analysis involving the systematic labelling of data with codes that form the building blocks to develop themes. 3 Generating initial themes Initial clustering of codes to inform tentative initial themes. 4 Developing and reviewing themes Evaluation of the tentative themes by considering initial clustering and scope for better patterning. Back and forth movement between data and analysis. 5 Refining, defining and naming themes Continued analytic progress involving fine tuning with clear thematic demarcation around centralised concepts and decisions relating to the structure and flow for write-up. 6 Writing up Deep analytic refinement and sharpening of flow with formal write-up. Output A publication from this work package will be submitted for peer review and publication in an open access journal. An accessible easy read of the finalised peer review article will be produced. Results may be presented at academic conference. Work package 5 – To ensure key stakeholders are involved in a meaningful manner throughout the lifecycle of the project, including the dissemination of key findings Objectives 5.1 – to ensure patient and public involvement (PPI) throughout the research cycle of this project 5.2 – to conduct multi-channel dissemination to the intellectual disability community, family members/caregivers, policymakers, service providers, general public and other key stakeholders 5.3 – to publish a statement from the research team synthesising outstanding questions, limitations and next steps IDS-TILDA have established relationships with advocacy groups and service providers throughout Ireland. Through these existing relationships, key stakeholders, including people with intellectual disability, will be invited to participate in the development of the project via involvement in a Steering Group. Recruitment to this will be circulated through the research centre’s social media, and the projects existing collaborations with NFVSP and HSE. It is anticipated the steering group would meet twice yearly online via Zoom. The Steering Group will assist with the study directions and monitor the study’s progress and outcomes and make recommendations. TCAID operates a PPI panel; the panel will be consulted as required throughout the research project. This would involve reviewing study results, reviewing the recruitment documents for people with intellectual disability in work package 4 as well as the study materials such as topic guide and accompanying images. It is anticipated that dissemination will involve the establishment of accessible easy read findings report which the PPI panel would be involved with. This project will engage in national and international dissemination via peer review publications in open access journals, conferences and invited talks. 3.0 Discussion The aim of this study is to provide economic evidence on the needs, resources and outcomes associated with supporting people aged ≥40 with intellectual disability to age in place. This will be achieved by i) estimating the total volume of support need at the population level, ii) estimating the costs and outcomes for different support models, iii) estimating the population-level costs and outcomes (2024–2034) under different policy scenarios, iv) eliciting perspectives of people with intellectual disability, their family members/caregivers and service providers. This study will add value to the lives of people with intellectual disability by facilitating proper planning. Establishing costs and quality of life for people with intellectual disability under various support models enables funding plans for services. This will assist in the government and services to provide personalised supports in a suitable setting for the individual, enabling more people to remain at home and age in place. 3.1 Strengths IDS-TILDA is the first longitudinal study on ageing among people with an intellectual disability in Europe. The measures are repeated with the same population at five timepoints allowing for trends to be tracked. To ensure this project is person-centred and valuable insights are gathered, PPI has been included in the project to date and will continue to the dissemination stage. The AARC-ID project will establish a independent Steering Group to provide advice on the project and review any issues which might arise. 3.2 Limitations Due to the range of information required to assign a level of support, this may result in a high level of missing data. IDS-TILDA does not gather information from healthcare professionals’ practice notes and therefore the reporting of conditions such as mental health condition is a self-report of having received a doctor’s diagnosis. As is common in epidemiological retrospective studies, it is acknowledged that recall bias may have impacted responses provided. Ethics and consent Ethical approval and consent were not required for this article. However, Ethical approval will be sought from the Faculty of Health Sciences, Trinity College Dublin. A Data Protection Impact Assessment reviewed and approved by the Data Protection Officer in the university, this will be completed prior to ethical approval. In relation to WP 4 (described above) ethical approval will also be sought from any service provider that participants will be recruited from. This will involve receiving informed consent from participants. Data use and protection processes within the author’s institution are being followed in regards to work packages 1–3. Data availability No data is associated with this article. Reporting guidelines This study will follow the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) standardised reporting guidelines for cohort studies ( von Elm et al. , 2008 ). Work package 4 will follow the Consolidated Criteria for Reporting Qualitative Studies (COREQ) reporting guidelines ( Tong et al. , 2007 ). Author contributions Contributor Role Role Definition Conceptualization Ideas; formulation or evolution of overarching research goals and aims. Data Curation Management activities to annotate (produce metadata), scrub data and maintain research data (including software code, where it is necessary for interpreting the data itself) for initial use and later reuse. Formal Analysis Application of statistical, mathematical, computational, or other formal techniques to analyze or synthesize study data. Funding Acquisition Acquisition of the financial support for the project leading to this publication. Investigation Conducting a research and investigation process, specifically performing the experiments, or data/evidence collection. Methodology Development or design of methodology; creation of models. Project Administration Management and coordination responsibility for the research activity planning and execution. Resources Provision of study materials, reagents, materials, patients, laboratory samples, animals, instrumentation, computing resources, or other analysis tools. Software Programming, software development; designing computer programs; implementation of the computer code and supporting algorithms; testing of existing code components. Supervision Oversight and leadership responsibility for the research activity planning and execution, including mentorship external to the core team. Validation Verification, whether as a part of the activity or separate, of the overall replication/reproducibility of results/experiments and other research outputs. Visualization Preparation, creation and/or presentation of the published work, specifically visualization/data presentation. Writing – Original Draft Preparation Creation and/or presentation of the published work, specifically writing the initial draft (including substantive translation). Writing – Review & Editing Preparation, creation and/or presentation of the published work by those from the original research group, specifically critical review, commentary or revision – including pre- or post-publication stages. Acknowledgements The authors would like to acknowledge all participants in IDS-TILDA since its inception as well as the individuals who have supported this work. The authors would also like to thank the AARC-ID study funders – the Health Research Board and the National Federation of Voluntary Service Providers; the HRB also fund IDS-TILDA. Supplementary material Appendix 1: Levels of support Appendix 2: Decision tree for possible transitions from own home/family home in one-year cycle Appendix 3: Decision tree for possible transitions from group home in one-year cycle Appendix 1: Levels of support Framework based on Cullinan et al. (2024) Level of intellectual disability Borderline-mild Moderate Severe-profound Not verified Additional needs Low: no support in (I)ADLS, no mental health condition(s), no behaviours of concern, no conditions under health variables section (epilepsy, diabetes, cardiac issues, dementia, multimorbidity), no condition under disability variables section (wheelchair user, requires hoisting, incontinence, enteral feeding, communication, visual impairment, total hearing loss) Intermediate: requires support up to 3 (I)ADLS, mental health condition (cannot calculate severity but do have information on if receiving psychological and/or psychiatric care), behaviours of concern low score (from stratified IDS-TILDA sample), one condition under health variables section (epilepsy, diabetes, cardiac issues, dementia, multimorbidity), one condition under disability variables section (wheelchair user, requires hoisting, incontinence, enteral feeding, communication, visual impairment, total hearing loss), reporting psychotropic use High: requires support in more than 3 (I)ADLS, mental health condition (cannot calculate severity but do have information on if receiving psychological and/or psychiatric care), behaviours of concern medium score (from stratified IDS-TILDA sample), two conditions under health variables section (epilepsy, diabetes, cardiac issues, dementia, multimorbidity), two or three conditions under disability variables section (wheelchair user, requires hoisting, incontinence, enteral feeding, communication, visual impairment, total hearing loss), reporting psychotropic use Very high: requires full support across all (I)ADLS, mental health condition (cannot calculate severity but do have information on if receiving psychological and/or psychiatric care), behaviours or concern high score (from stratified IDS-TILDA sample), three or more conditions under health variables section (epilepsy, diabetes, cardiac issues, dementia, multimorbidity), four or more conditions under disability variables section (wheelchair user, requires hoisting, incontinence, enteral feeding, communication, visual impairment, total hearing loss), reporting psychotropic use Levels of support Very low: borderline-mild ID AND low additional needs Low: borderline-mild ID AND intermediate additional needs Moderate: borderline-mild ID AND high or very high additional needs, moderate ID AND low additional needs High: moderate ID AND intermediate additional needs OR high additional needs Very high: severe-profound AND very high additional needs In Cullinan et al . (2024) but excluded from this (due to: availability in IDS-TILDA, relevance to ID population) Disability variables Physical and sensory – none, absent limb/ reduced limb function, acquired brain injury, cerebral palsy, hemiplegia, neurological condition, other diagnosis, quadriplegia Psychiatric/psychological variables confirmed autism diagnosis dual autism/mental health diagnosis forensic issues substituted for behaviours of concern behaviour variables requires support for prevention of emotional outbursts requires support for prevention of suicide attempts requires support for prevention of property destruction requires support for prevention of wandering requires support for prevention of stealing requires support for prevention of non-aggressive but inappropriate sexual behaviour requires support for prevention of substance abuse supports and plans variables safeguarding plan in place Appendix 2: Decision tree for possible transitions from own home/family home in one-year cycle Appendix 3: Decision tree for possible transitions from group home in one-year cycle Faculty Opinions recommended References Braun V, Clarke V: Using thematic analysis in psychology. 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Publisher Full Text Comments on this article Comments (0) Version 1 VERSION 1 PUBLISHED 24 Jan 2025 ADD YOUR COMMENT Comment Author details Author details 1 Trinity Centre for Ageing and Intellectual Disability, Trinity College Dublin School of Nursing and Midwifery, Dublin, Ireland 2 National Disability Operations, Health Service Executive, Dublin, Ireland 3 King's College London Florence Nightingale Faculty of Nursing Midwifery & Palliative Care, London, England, UK 4 Centre for Health Policy and Management, Trinity College Dublin School of Medicine, Dublin, Ireland 5 Temple University School of Social Work, Philadelphia, Pennsylvania, USA 6 National Federation of Voluntary Service Providers, Galway, Ireland 7 Health Research Board, Dublin, Ireland 8 Trinity Centre for Practice and Healthcare Innovation, Trinity College Dublin School of Nursing and Midwifery, Dublin, Ireland 9 School of Nursing, Maynooth University, Maynooth, Ireland 10 Centre for Disability Studies, The University of Sydney, Sydney, New South Wales, Australia Ashleigh Gorman Roles: Data Curation, Formal Analysis, Investigation, Methodology, Project Administration, Visualization, Writing – Original Draft Preparation Tony O'Brien Roles: Conceptualization, Formal Analysis, Funding Acquisition, Methodology, Resources, Writing – Review & Editing Peter May Roles: Conceptualization, Funding Acquisition, Methodology, Validation, Writing – Review & Editing Irina Kinchin Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Investigation, Methodology, Visualization, Writing – Review & Editing Philip McCallion Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Mary McCarron Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Caitriona Ryan Roles: Conceptualization, Data Curation, Funding Acquisition, Methodology, Writing – Review & Editing Helena Connors Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Sarah Craig Roles: Conceptualization, Data Curation, Funding Acquisition, Methodology, Writing – Review & Editing Louise Daly Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Methodology, Writing – Review & Editing Alison Harnett Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Fintan Sheerin Roles: Conceptualization, Data Curation, Formal Analysis, Funding Acquisition, Methodology, Writing – Review & Editing Mei Lin Yap Roles: Conceptualization, Funding Acquisition, Methodology, Supervision, Writing – Review & Editing Samantha Smith Roles: Conceptualization, Funding Acquisition, Methodology, Resources, Writing – Review & Editing Mary-Ann O'Donovan Roles: Conceptualization, Funding Acquisition, Methodology, Writing – Review & Editing Martin McMahon Roles: Data Curation, Formal Analysis, Investigation, Methodology, Supervision, Validation, Writing – Review & Editing Competing interests Co-authors AH and HC are employed by the National Federation of Voluntary Service Providers, who have provided some funding to this study. Their involvement will not impact the study findings. Co-author SC is employed by the Health Research Board, who have provided funding to this study. Their involvement will not impact the study findings. Grant information This study is funded by the Health Research Board Applied Partnership Awards [APA-2022-023] andin collaboration with the National Federation of Voluntary Service Providers. Article Versions (1) version 1 Published: 24 Jan 2025, 8:13 https://doi.org/10.12688/hrbopenres.14019.1 Copyright © 2025 Gorman A et al . This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Download Export To Sciwheel Bibtex EndNote ProCite Ref. Manager (RIS) Sente metrics VIEWS $counts.viewCount downloads Citations open_in_new 0 open_in_new 0 open_in_new SEE MORE DETAILS CITE how to cite this article Gorman A, O'Brien T, May P et al. Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] . HRB Open Res 2025, 8 :13 ( https://doi.org/10.12688/hrbopenres.14019.1 ) NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article. COPY CITATION DETAILS track receive updates on this article Track an article to receive email alerts on any updates to this article. TRACK THIS ARTICLE Share Open Peer Review Current Reviewer Status: ? Key to Reviewer Statuses VIEW HIDE Approved The paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. Not approved Fundamental flaws in the paper seriously undermine the findings and conclusions Version 1 VERSION 1 PUBLISHED 24 Jan 2025 Views 0 Cite How to cite this report: Desroches ML. Reviewer Report For: Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] . HRB Open Res 2025, 8 :13 ( https://doi.org/10.21956/hrbopenres.15388.r45867 ) The direct URL for this report is: https://hrbopenresearch.org/articles/8-13/v1#referee-response-45867 NOTE: it is important to ensure the information in square brackets after the title is included in this citation. Close Copy Citation Details Reviewer Report 18 Mar 2025 Melissa L Desroches , University of Massachusetts Dartmouth, North Dartmouth, USA Approved with Reservations VIEWS 0 https://doi.org/10.21956/hrbopenres.15388.r45867 Title/abstract: Recommend a clear articulation of the study design. Though the study is identified as an economic analysis, the study design appears to be broader, inclusive of first-hand perspectives. If this is the norm for economic analyses, identification of a ... Continue reading READ ALL Title/abstract: Recommend a clear articulation of the study design. Though the study is identified as an economic analysis, the study design appears to be broader, inclusive of first-hand perspectives. If this is the norm for economic analyses, identification of a particular framework or method for economic analysis would be useful to aid understanding of how the many parts of this study interrelate to inform the study’s aim. Introduction: The overall estimated prevalence of intellectual disability in Ireland would be helpful to contextualize the proportion of the population affected by unmet residential support needs (projected or actual). The aim, as stated on page 13, seeks to evaluate efficiency and effectiveness, both quantitative concepts. How are these concepts defined and operationalized in this study? I would infer that effectiveness may be in terms of maintaining the least restrictive residential environment, however this is not clearly identified in the study aim. There are also qualitative data collected. What is being evaluated qualitatively? The acceptability of different scenarios? Methods: This section commences with information about data sources, rather than identifying the overall design of the study and rationale for its selection. A framework (whether an existing framework or a schema designed for the study by the research team) would be helpful (especially in a visual format), that includes the contribution of each work package in terms of key concepts/variables, measures, and data sources, and how these interrelate to address the study aim. For example, through a careful review of the manuscript, I can identify a number of variables from reading through the different WPs, including transition to higher support level, mortality, quality of life, and costs. For WP 1, it is identified that participant data reporting “independent or community group home” will be extracted from the data set. It is not clear why those living in family homes will not be included in this extraction. Was this a typo or is there a rationale? Similarly, those living in residential campus settings will also not have their data extracted. Is there an unstated assumption that those living in residential campus settings will not be transferred to nursing homes because they are already living in an institutional-type setting? A rationale for extracting data only from the two identified groups is needed for clarity. In Appendix 1, there is a list of several characteristics that are “excluded from this (due to availability in IDS-TILDA, relevance to ID population).” I would assume that the “this” being referred to is the inclusion in the definition of levels of support in the present study. However, it is not clear which items from Cullinan are excluded due to availability in IDS-TILDA versus relevance to ID population. How was relevance to ID population determined? By the research team? It would be helpful to know on which criterion these were excluded, as “wandering” would appear to have high relevance for the aging population of people with ID due to its association with dementia. Also, for Objective 1.3, what is meant by adjustments for time “interviews” is unclear. Is “interviews” meant to be “intervals”? For WP 2, “specific personnel inputs required” to age in place will be derived from expert knowledge. This seems to be an important piece of determining costs, as these supports will have cost implications. Who are the experts that will determine this and what will the process be? For Objective 2.2, how will these costs for additional in-home supports for people with ID be identified? Based on support costs for similar supports in the general population? Is this equivalent in reality? Are there considerations for workforce shortages of support workers to support individuals and families with in-home and group home supports? For example, in the US in particular (as well as the UK, I am told) there is a significant shortage of support workers, such that use of overtime incentive pay is needed to attract support workers to fill empty shifts, contributing to increasing costs to organizations. Does this study assume an adequate supply of support workers or will the impact of potential overtime be addressed in this study? For Objective 2.3, how will quality of life be defined and operationalized? There is no mention of quality of life measurement and whose perspective of quality of life is evaluated. A logistic regression is reported as the data analysis strategy- is the outcome variable “impact on quality of life, Yes or No”. How would this be determined? A comparison group is also identified. The analysis involving quality of life and the comparison group needs further description. For WP 3, how is declining availability of unpaid family care forecasted? The outcomes for this work project need to be clearly defined. For Objective 3.2, why leave out independent homes and focus only on family homes and community group homes? Could individuals living independently also have support needs that are met by family members or carers that have increased in intensity during the time interval? How will the availability of home care supports be determined by policy scenario? What number of scenarios will be used? Is “policy scenario” used interchangeably with “budget scenario” as in the previous objectives? For WP 4, recruitment for focus groups with participants with ID is described as from two service providers—out of how many? How will these service providers be selected? Please interpret what is meant by Section 38 & 39 for an international audience. How will minority perspectives be addressed in focus groups? Will the focus groups be mixed with the different participant types? If so, how will the power dynamics be addressed, particularly for those with ID? What types of questions will be asked in the focus groups? There is no description of the questions the focus groups aim to answer. An interview guide would be helpful to see, as would a plan for integrating qualitative and quantitative results, and plans to promote trustworthiness of the analysis. For WP 5, what is the expected project period (with two meetings per year)? Will the Steering Group members, especially participants with ID, be compensated for their time? Objective 5.3 focuses on reporting limitations and next steps, listed as a separate objective from dissemination (5.2). Given this is a separate objective, what is the plan to achieve this objective? Discussion: Attention to how the findings of the various work projects will be integrated and placed in context is needed. As identified in the methods section, quality of life is identified as an outcome variable, however there is no description of its operationalization. Given that quality of life has been described as a paradigm to guide service delivery for people with ID, but is also a measure that can carry biases depending on who is providing the data and how it is used, some discussion of this type would be warranted. Additionally, the risk for missing data is identified by the researchers- is there a plan for how this will be addressed? It may be the formatting of the journal, but it is also unclear where the research manuscript ends and the supplementary materials begins. It would be helpful if the authors could end with a strong conclusion statement. Is the rationale for, and objectives of, the study clearly described? Yes Is the study design appropriate for the research question? Partly Are sufficient details of the methods provided to allow replication by others? Partly Are the datasets clearly presented in a useable and accessible format? Yes Competing Interests: No competing interests were disclosed. Reviewer Expertise: Intellectual and developmental disabilities nursing I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above. Close READ LESS CITE CITE HOW TO CITE THIS REPORT Desroches ML. Reviewer Report For: Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] . HRB Open Res 2025, 8 :13 ( https://doi.org/10.21956/hrbopenres.15388.r45867 ) The direct URL for this report is: https://hrbopenresearch.org/articles/8-13/v1#referee-response-45867 NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article. COPY CITATION DETAILS Report a concern Respond or Comment COMMENT ON THIS REPORT Views 0 Cite How to cite this report: Doody O. Reviewer Report For: Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] . HRB Open Res 2025, 8 :13 ( https://doi.org/10.21956/hrbopenres.15388.r45868 ) The direct URL for this report is: https://hrbopenresearch.org/articles/8-13/v1#referee-response-45868 NOTE: it is important to ensure the information in square brackets after the title is included in this citation. Close Copy Citation Details Reviewer Report 04 Mar 2025 Owen Doody , Health Research Institute, University of Limerick, Limerick, Ireland Approved VIEWS 0 https://doi.org/10.21956/hrbopenres.15388.r45868 Abstract - The issue of funding systems not being responsive is mentioned but could be linked to the study’s objective. While data sources are listed, a brief mention of how they will be analysed (e.g., statistical modeling, thematic analysis) would make ... Continue reading READ ALL Abstract - The issue of funding systems not being responsive is mentioned but could be linked to the study’s objective. While data sources are listed, a brief mention of how they will be analysed (e.g., statistical modeling, thematic analysis) would make the methodology clearer. The last sentence is cut off, leaving the final point unclear. Introduction - some long sentences which may affect readability. The information on funding and support mechanisms sometimes overlaps, streamline to avoid repetition. While the introduction references policy documents, it could benefit from a brief discussion of existing research on aging with ID. A clearer identification of the research gap (i.e., what is already known and what is missing) would further justify the study’s importance. The introduction states that the research aims to inform policy, but it could more explicitly outline how findings might influence funding models, service provision, or future government initiatives. A more direct statement about the intended use of findings in policy-making would strengthen the introduction’s impact. Methods - certain explanations (e.g., IDS-TILDA data collection process, definitions of residence types) are repeated multiple times and could be streamlined, consider using summarised tables where possible (e.g., residence categories, levels of support framework) instead of lengthy descriptions. Markov modeling approach for projecting support needs could benefit from a brief justification (e.g., why Markov models were chosen over alternative forecasting methods). The logistic regression approach for analyzing quality of life (WP2) is outlined, but potential confounders and how they will be addressed should be briefly mentioned. The economic modeling approach assumes fixed policy scenarios, but how future policy shifts or economic changes will be accounted for is not fully addressed. The assumption that nursing home capacity is "infinite" should be reconsidered or clarified. WP1-3 are highly interconnected, and how insights from one WP will inform another could be more clearly articulated (e.g., how WP1 projections impact WP2 cost modeling etc). The study uses both quantitative and qualitative methods but does not explicitly explain how the two will be integrated. A data triangulation strategy should be briefly mentioned to enhance credibility. Will qualitative insights from WP4 be used to refine or validate economic models? The term “non-reversible” level of support is used in WP1, but it is unclear whether this means support needs can only increase and whether this assumption aligns with real-world cases where some interventions can improve independence. Discussion - the discussion begins by listing the study objectives again. While reinforcing them is useful, this section could be more analytical and interpretative rather than just descriptive. Instead of repeating the objectives, it would be more effective to discuss key takeaways, emerging insights, or the broader relevance of findings. The discussion section should reflect on what the findings mean in a broader context. There is no synthesis of preliminary trends or potential findings based on the study’s design and existing data (IDS-TILDA, NASS, qualitative insights). How will the results challenge or confirm existing policy assumptions? What are the unexpected insights that this study may reveal? While IDS-TILDA’s longitudinal nature is mentioned as a strength, other methodological strengths should also be highlighted, such as: The combination of quantitative and qualitative data, providing a holistic approach to policy recommendations. The use of scenario-based projections, which allows for future-oriented planning. The importance of real-world economic modelling should be discussed in more depth. Limitations - the limitations listed are valid but the section would benefit from a more critical reflection on potential weaknesses, such as: generalisability (IDS-TILDA is an Irish study), how applicable are the findings to other countries with different healthcare and disability funding systems? Policy assumption, the study assumes static policy conditions in its projections, but policies change over time. How might this affect the findings? Potential bias in PPI & Steering Group, while PPI is a strength, there is no discussion of how biases might emerge (e.g., the views of people with severe disabilities may not be fully represented). Ethics - given the sensitive nature of this study, it would be beneficial to discuss how ethical challenges (e.g., informed consent from people with ID, power dynamics in qualitative research) are being managed. Inconsistent and confusing wording - the first sentence states that: "Ethical approval and consent were not required for this article." However, the rest of the section states that ethical approval will be sought. This contradiction needs clarification. It states that informed consent will be obtained, but more detail is needed: Will participants receive accessible information sheets? How will consent be obtained for individuals with intellectual disabilities? Will assisted decision-making procedures be used? Will there be ongoing consent processes, given the longitudinal nature of some data collection? Data availability / DIPA - ethics and data availability may overlap, DIPA mentioned in ethics and data availability section provided could specify in one of these sections - how long data will be retained, who will have access to identifiable vs. anonymized data, whether qualitative interviews (WP4) will be audio-recorded and transcribed, and how participant anonymity will be preserved. No mention of ethical risks and mitigation strategies how the study will: minimise potential distress for participants. Address power imbalances between researchers and participants. Ensure that participants with severe disabilities can be meaningfully included. Is the rationale for, and objectives of, the study clearly described? Yes Is the study design appropriate for the research question? Yes Are sufficient details of the methods provided to allow replication by others? Partly Are the datasets clearly presented in a useable and accessible format? Not applicable Competing Interests: No competing interests were disclosed. Reviewer Expertise: Intellectual disability nurse, academic and researcher. I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard. Close READ LESS CITE CITE HOW TO CITE THIS REPORT Doody O. Reviewer Report For: Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] . HRB Open Res 2025, 8 :13 ( https://doi.org/10.21956/hrbopenres.15388.r45868 ) The direct URL for this report is: https://hrbopenresearch.org/articles/8-13/v1#referee-response-45868 NOTE: it is important to ensure the information in square brackets after the title is included in all citations of this article. COPY CITATION DETAILS Report a concern Respond or Comment COMMENT ON THIS REPORT Comments on this article Comments (0) Version 1 VERSION 1 PUBLISHED 24 Jan 2025 ADD YOUR COMMENT Comment keyboard_arrow_left keyboard_arrow_right Open Peer Review Reviewer Status info_outline Alongside their report, reviewers assign a status to the article: Approved The paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. Not approved Fundamental flaws in the paper seriously undermine the findings and conclusions Reviewer Reports Invited Reviewers 1 2 Version 1 24 Jan 25 read read Owen Doody , Health Research Institute, University of Limerick, Limerick, Ireland Melissa L Desroches , University of Massachusetts Dartmouth, North Dartmouth, USA Comments on this article All Comments (0) Add a comment Sign up for content alerts Sign Up You are now signed up to receive this alert keyboard_arrow_left Back to all reports Reviewer Report 0 Views copyright © 2025 Desroches M. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. 18 Mar 2025 | for Version 1 Melissa L Desroches , University of Massachusetts Dartmouth, North Dartmouth, USA 0 Views copyright © 2025 Desroches M. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. format_quote Cite this report speaker_notes Responses (0) Approved With Reservations info_outline Alongside their report, reviewers assign a status to the article: Approved The paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. Not approved Fundamental flaws in the paper seriously undermine the findings and conclusions Title/abstract: Recommend a clear articulation of the study design. Though the study is identified as an economic analysis, the study design appears to be broader, inclusive of first-hand perspectives. If this is the norm for economic analyses, identification of a particular framework or method for economic analysis would be useful to aid understanding of how the many parts of this study interrelate to inform the study’s aim. Introduction: The overall estimated prevalence of intellectual disability in Ireland would be helpful to contextualize the proportion of the population affected by unmet residential support needs (projected or actual). The aim, as stated on page 13, seeks to evaluate efficiency and effectiveness, both quantitative concepts. How are these concepts defined and operationalized in this study? I would infer that effectiveness may be in terms of maintaining the least restrictive residential environment, however this is not clearly identified in the study aim. There are also qualitative data collected. What is being evaluated qualitatively? The acceptability of different scenarios? Methods: This section commences with information about data sources, rather than identifying the overall design of the study and rationale for its selection. A framework (whether an existing framework or a schema designed for the study by the research team) would be helpful (especially in a visual format), that includes the contribution of each work package in terms of key concepts/variables, measures, and data sources, and how these interrelate to address the study aim. For example, through a careful review of the manuscript, I can identify a number of variables from reading through the different WPs, including transition to higher support level, mortality, quality of life, and costs. For WP 1, it is identified that participant data reporting “independent or community group home” will be extracted from the data set. It is not clear why those living in family homes will not be included in this extraction. Was this a typo or is there a rationale? Similarly, those living in residential campus settings will also not have their data extracted. Is there an unstated assumption that those living in residential campus settings will not be transferred to nursing homes because they are already living in an institutional-type setting? A rationale for extracting data only from the two identified groups is needed for clarity. In Appendix 1, there is a list of several characteristics that are “excluded from this (due to availability in IDS-TILDA, relevance to ID population).” I would assume that the “this” being referred to is the inclusion in the definition of levels of support in the present study. However, it is not clear which items from Cullinan are excluded due to availability in IDS-TILDA versus relevance to ID population. How was relevance to ID population determined? By the research team? It would be helpful to know on which criterion these were excluded, as “wandering” would appear to have high relevance for the aging population of people with ID due to its association with dementia. Also, for Objective 1.3, what is meant by adjustments for time “interviews” is unclear. Is “interviews” meant to be “intervals”? For WP 2, “specific personnel inputs required” to age in place will be derived from expert knowledge. This seems to be an important piece of determining costs, as these supports will have cost implications. Who are the experts that will determine this and what will the process be? For Objective 2.2, how will these costs for additional in-home supports for people with ID be identified? Based on support costs for similar supports in the general population? Is this equivalent in reality? Are there considerations for workforce shortages of support workers to support individuals and families with in-home and group home supports? For example, in the US in particular (as well as the UK, I am told) there is a significant shortage of support workers, such that use of overtime incentive pay is needed to attract support workers to fill empty shifts, contributing to increasing costs to organizations. Does this study assume an adequate supply of support workers or will the impact of potential overtime be addressed in this study? For Objective 2.3, how will quality of life be defined and operationalized? There is no mention of quality of life measurement and whose perspective of quality of life is evaluated. A logistic regression is reported as the data analysis strategy- is the outcome variable “impact on quality of life, Yes or No”. How would this be determined? A comparison group is also identified. The analysis involving quality of life and the comparison group needs further description. For WP 3, how is declining availability of unpaid family care forecasted? The outcomes for this work project need to be clearly defined. For Objective 3.2, why leave out independent homes and focus only on family homes and community group homes? Could individuals living independently also have support needs that are met by family members or carers that have increased in intensity during the time interval? How will the availability of home care supports be determined by policy scenario? What number of scenarios will be used? Is “policy scenario” used interchangeably with “budget scenario” as in the previous objectives? For WP 4, recruitment for focus groups with participants with ID is described as from two service providers—out of how many? How will these service providers be selected? Please interpret what is meant by Section 38 & 39 for an international audience. How will minority perspectives be addressed in focus groups? Will the focus groups be mixed with the different participant types? If so, how will the power dynamics be addressed, particularly for those with ID? What types of questions will be asked in the focus groups? There is no description of the questions the focus groups aim to answer. An interview guide would be helpful to see, as would a plan for integrating qualitative and quantitative results, and plans to promote trustworthiness of the analysis. For WP 5, what is the expected project period (with two meetings per year)? Will the Steering Group members, especially participants with ID, be compensated for their time? Objective 5.3 focuses on reporting limitations and next steps, listed as a separate objective from dissemination (5.2). Given this is a separate objective, what is the plan to achieve this objective? Discussion: Attention to how the findings of the various work projects will be integrated and placed in context is needed. As identified in the methods section, quality of life is identified as an outcome variable, however there is no description of its operationalization. Given that quality of life has been described as a paradigm to guide service delivery for people with ID, but is also a measure that can carry biases depending on who is providing the data and how it is used, some discussion of this type would be warranted. Additionally, the risk for missing data is identified by the researchers- is there a plan for how this will be addressed? It may be the formatting of the journal, but it is also unclear where the research manuscript ends and the supplementary materials begins. It would be helpful if the authors could end with a strong conclusion statement. Is the rationale for, and objectives of, the study clearly described? Yes Is the study design appropriate for the research question? Partly Are sufficient details of the methods provided to allow replication by others? Partly Are the datasets clearly presented in a useable and accessible format? Yes Competing Interests No competing interests were disclosed. Reviewer Expertise Intellectual and developmental disabilities nursing I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above. reply Respond to this report Responses (0) Desroches ML. Peer Review Report For: Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] . HRB Open Res 2025, 8 :13 ( https://doi.org/10.21956/hrbopenres.15388.r45867) NOTE: it is important to ensure the information in square brackets after the title is included in this citation. The direct URL for this report is: https://hrbopenresearch.org/articles/8-13/v1#referee-response-45867 keyboard_arrow_left Back to all reports Reviewer Report 0 Views copyright © 2025 Doody O. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. 04 Mar 2025 | for Version 1 Owen Doody , Health Research Institute, University of Limerick, Limerick, Ireland 0 Views copyright © 2025 Doody O. This is an open access peer review report distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. format_quote Cite this report speaker_notes Responses (0) Approved info_outline Alongside their report, reviewers assign a status to the article: Approved The paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. Not approved Fundamental flaws in the paper seriously undermine the findings and conclusions Abstract - The issue of funding systems not being responsive is mentioned but could be linked to the study’s objective. While data sources are listed, a brief mention of how they will be analysed (e.g., statistical modeling, thematic analysis) would make the methodology clearer. The last sentence is cut off, leaving the final point unclear. Introduction - some long sentences which may affect readability. The information on funding and support mechanisms sometimes overlaps, streamline to avoid repetition. While the introduction references policy documents, it could benefit from a brief discussion of existing research on aging with ID. A clearer identification of the research gap (i.e., what is already known and what is missing) would further justify the study’s importance. The introduction states that the research aims to inform policy, but it could more explicitly outline how findings might influence funding models, service provision, or future government initiatives. A more direct statement about the intended use of findings in policy-making would strengthen the introduction’s impact. Methods - certain explanations (e.g., IDS-TILDA data collection process, definitions of residence types) are repeated multiple times and could be streamlined, consider using summarised tables where possible (e.g., residence categories, levels of support framework) instead of lengthy descriptions. Markov modeling approach for projecting support needs could benefit from a brief justification (e.g., why Markov models were chosen over alternative forecasting methods). The logistic regression approach for analyzing quality of life (WP2) is outlined, but potential confounders and how they will be addressed should be briefly mentioned. The economic modeling approach assumes fixed policy scenarios, but how future policy shifts or economic changes will be accounted for is not fully addressed. The assumption that nursing home capacity is "infinite" should be reconsidered or clarified. WP1-3 are highly interconnected, and how insights from one WP will inform another could be more clearly articulated (e.g., how WP1 projections impact WP2 cost modeling etc). The study uses both quantitative and qualitative methods but does not explicitly explain how the two will be integrated. A data triangulation strategy should be briefly mentioned to enhance credibility. Will qualitative insights from WP4 be used to refine or validate economic models? The term “non-reversible” level of support is used in WP1, but it is unclear whether this means support needs can only increase and whether this assumption aligns with real-world cases where some interventions can improve independence. Discussion - the discussion begins by listing the study objectives again. While reinforcing them is useful, this section could be more analytical and interpretative rather than just descriptive. Instead of repeating the objectives, it would be more effective to discuss key takeaways, emerging insights, or the broader relevance of findings. The discussion section should reflect on what the findings mean in a broader context. There is no synthesis of preliminary trends or potential findings based on the study’s design and existing data (IDS-TILDA, NASS, qualitative insights). How will the results challenge or confirm existing policy assumptions? What are the unexpected insights that this study may reveal? While IDS-TILDA’s longitudinal nature is mentioned as a strength, other methodological strengths should also be highlighted, such as: The combination of quantitative and qualitative data, providing a holistic approach to policy recommendations. The use of scenario-based projections, which allows for future-oriented planning. The importance of real-world economic modelling should be discussed in more depth. Limitations - the limitations listed are valid but the section would benefit from a more critical reflection on potential weaknesses, such as: generalisability (IDS-TILDA is an Irish study), how applicable are the findings to other countries with different healthcare and disability funding systems? Policy assumption, the study assumes static policy conditions in its projections, but policies change over time. How might this affect the findings? Potential bias in PPI & Steering Group, while PPI is a strength, there is no discussion of how biases might emerge (e.g., the views of people with severe disabilities may not be fully represented). Ethics - given the sensitive nature of this study, it would be beneficial to discuss how ethical challenges (e.g., informed consent from people with ID, power dynamics in qualitative research) are being managed. Inconsistent and confusing wording - the first sentence states that: "Ethical approval and consent were not required for this article." However, the rest of the section states that ethical approval will be sought. This contradiction needs clarification. It states that informed consent will be obtained, but more detail is needed: Will participants receive accessible information sheets? How will consent be obtained for individuals with intellectual disabilities? Will assisted decision-making procedures be used? Will there be ongoing consent processes, given the longitudinal nature of some data collection? Data availability / DIPA - ethics and data availability may overlap, DIPA mentioned in ethics and data availability section provided could specify in one of these sections - how long data will be retained, who will have access to identifiable vs. anonymized data, whether qualitative interviews (WP4) will be audio-recorded and transcribed, and how participant anonymity will be preserved. No mention of ethical risks and mitigation strategies how the study will: minimise potential distress for participants. Address power imbalances between researchers and participants. Ensure that participants with severe disabilities can be meaningfully included. Is the rationale for, and objectives of, the study clearly described? Yes Is the study design appropriate for the research question? Yes Are sufficient details of the methods provided to allow replication by others? Partly Are the datasets clearly presented in a useable and accessible format? Not applicable Competing Interests No competing interests were disclosed. Reviewer Expertise Intellectual disability nurse, academic and researcher. I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard. reply Respond to this report Responses (0) Doody O. Peer Review Report For: Addressing Age-Related Complexity in Intellectual Disability (AARC-ID): an economic analysis of different support models. Study protocol. [version 1; peer review: 1 approved, 1 approved with reservations] . HRB Open Res 2025, 8 :13 ( https://doi.org/10.21956/hrbopenres.15388.r45868) NOTE: it is important to ensure the information in square brackets after the title is included in this citation. The direct URL for this report is: https://hrbopenresearch.org/articles/8-13/v1#referee-response-45868 Alongside their report, reviewers assign a status to the article: Approved - the paper is scientifically sound in its current form and only minor, if any, improvements are suggested Approved with reservations - A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit. 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Register $(document).ready(function () { signIn.createSignInAsRow($("#sign-in-form-gfb-popup")); $(".target-field").each(function () { var uris = $(this).val().split("/"); if (uris.pop() === "login") { $(this).val(uris.toString().replace(",","/")); } }); }); (function(){function c(){var b=a.contentDocument||a.contentWindow.document;if(b){var d=b.createElement('script');d.innerHTML="window.__CF$cv$params={r:'a0003b341ec5300f',t:'MTc3OTQ5OTE1NA=='};var a=document.createElement('script');a.src='/cdn-cgi/challenge-platform/scripts/jsd/main.js';document.getElementsByTagName('head')[0].appendChild(a);";b.getElementsByTagName('head')[0].appendChild(d)}}if(document.body){var a=document.createElement('iframe');a.height=1;a.width=1;a.style.position='absolute';a.style.top=0;a.style.left=0;a.style.border='none';a.style.visibility='hidden';document.body.appendChild(a);if('loading'!==document.readyState)c();else if(window.addEventListener)document.addEventListener('DOMContentLoaded',c);else{var e=document.onreadystatechange||function(){};document.onreadystatechange=function(b){e(b);'loading'!==document.readyState&&(document.onreadystatechange=e,c())}}}})();