Work Disability Research Articles

Diabetes Mellitus and its Association with Work Patterns and Characteristics: A Narrative Review.

Diabetes mellitus is a leading cause of disability with adverse effects on the quality of life. It also affects occupational health by impacting several work-related parameters. This review discusses the relationship between diabetes and absenteeism, presenteeism, work impairment and unemployment. The association between work and diabetic complications such as neuropathic pain, diabetic foot, psychological issues and hypoglycemia due to treatment is also examined. Evidence points to a relationship between diabetes and absenteeism, reduced work productivity, and, thus, overall work impairment. A stronger negative impact on work performance is mediated by painful diabetic neuropathy and diabetic foot. In addition, psychological distress has been positively correlated with total workdays lost and frequency of absence. Depression in the diabetic population has also been linked with increased absenteeism, presenteeism, and work disability. Moreover, hypoglycaemia induced by antidiabetic medication may affect work attendance and performance. Finally, diabetes has been associated with inequality in the work environment, lower job satisfaction and higher unemployment rates, mainly because of its complications.

Rehabilitating Workers Aged 55 and Over: Professionals' Perspectives and Solutions.

Work disability affects a growing number of workers aged 55 and over (W55 +). While rehabilitation programs have demonstrated efficacy for workers with an average age of 42, they often have not been designed to meet unique needs of aging workers. This study aimed to describe the difficulties encountered by work rehabilitation professionals and explore their solutions for improving services offered to W55 + . This study used a simple descriptive design with purposive sampling. Occupational therapists, physical therapists, and psychologists were mainly recruited in private clinics. An interview guide based on the Work Disability Paradigm was piloted and used with the participants. Qualitative interviews were conducted with work rehabilitation professionals and then transcribed. A thematic analysis was performed. The sample consisted of fifteen participants (average age 38years) with near equal representation across genders and disciplines. Difficulties were identified in relation to the (1) characteristics of W55 + , (2) work environment, (3) compensation system, and (4) communication among stakeholders. Five solutions were proposed to improve the services offered: provide healthcare professionals with access to tools and training, implement communication mechanisms, integrate a return-to-work coordinator, develop a joint action plan for managing W55 + , and implement an integrative prevention approach in workplaces. Our results represent a first step in mapping various stakeholders' needs to ensure better support for W55 + with work disabilities. These results delineate a roadmap for future research that should expand upon these stakeholders' perspectives to provide a more comprehensive description of their needs and potential solutions.

Predictive Model for Opioid Use Disorder in Chronic Pain: A Development and Validation Study.

There are several questionnaires for the challenge of anticipating opioid use disorder (OUD). However, many are not specific for chronic non-cancer pain (CNCP) or have been developed in the American population, whose sociodemographic factors are very different from the Spanish population, leading to scarce translation into clinical practice. Thus, the aim of this study is to prospectively validate a predictive model for OUD in Spanish patients under long-term opioids. An innovative two-stage predictive model was developed from retrospective (n = 129) and non-overlapping prospective (n = 100) cohorts of real-world CNCP outpatients. All subjects used prescribed opioids for 6 or more months. Sociodemographic, clinical and pharmacological covariates were registered. Mu-opioid receptor 1 (OPRM1, A118G, rs1799971) and catechol-O-methyltransferase (COMT, G472A, rs4680) genetic variants plus cytochrome P450 2D6 (CYP2D6) liver enzyme phenotypes were also analyzed. The model performance and diagnostic accuracy were calculated. The two-stage model comprised risk factors related to OUD (younger age, work disability and high daily opioid dose) and provided new useful information about other risk factors (low quality of life, OPRM-G allele and CYP2D6 extreme phenotypes). The validation showed a satisfactory accuracy (70% specificity and 75% sensitivity) for our predictive model with acceptable discrimination and goodness of fit. Our study presents the results of an innovative model for predicting OUD in our setting. After external validation, it could represent a change in the paradigm of opioid treatment, helping clinicians to better identify and manage the risks and reduce the side effects and complications.

Does Knee Arthroplasty Have a Beneficial Effect on Return to Work in Patients with Knee Osteoarthritis who Receive Long-Term Disability Benefits in the Netherlands?

Optimal timing of knee arthroplasty (KA) is complex: operating at a younger age increases life time risk of revision, while delay results in an increased risk of job loss. This study evaluates whether disability benefits recipients due to knee osteoarthritis have an increased odds of returning to work (RTW) following KA. A retrospective cohort study was performed among long-term disability benefits recipients due to knee osteoarthritis using data of the Dutch Employee Insurance Agency. Logistic regression assessed whether recipients with KA had a higher odds of RTW in 10years following start of disability benefits, compared to those without KA. A total of 159 participants were included. During 10-year follow up, 42% had received KA and 37% had returned to work. No association was observed between KA and RTW (OR 1.39, 95% CI 0.62-3.12). Prognostic factors for RTW were being the main breadwinner (OR 7.93, 95% CI 2.95-21.32) and classification as 100% work disability (OR 0.20, 95% CI 0.09-0.45). KA has no beneficial effect on RTW among patients with knee osteoarthritis granted long-term disability in the Netherlands. For RTW, KA is probably best performed within the two years of paid sick leave before long-term disability is assessed in the Netherlands.

Protocol of a randomized controlled trial on the effectiveness and cost-effectiveness of the PLACES intervention: a supported employment intervention aimed at enhancing work participation of unemployed and/or work-disabled cancer survivors

BackgroundApproximately onethird of cancer survivors encounter challenges reintegrating into the workforce, often experiencing involuntary unemployment and/or partial or full work disability following diagnosis and treatment. Returning to paid employment presents evident challenges due to uncertainties regarding work ability, perceived employer discrimination, and a lack of support, thereby risking social exclusion. However, interventions addressing return to paid employment among unemployed and/or work-disabled cancer survivors are scarce. Here, we describe the protocol of a randomized controlled trial (RCT), including a process and economic evaluation, evaluating the effectiveness and cost-effectiveness of the PLACES (unemPLoyed cAnCEr survivors Support) intervention aimed at supporting unemployed and/or work-disabled cancer survivors returning to paid employment.MethodsA two-armed RCT with a 12-month follow-up period will be conducted. Eligible participants: (1) are of working age (18–65 years), (2) are diagnosed with cancer between 6 months and 10 years ago, (3) are unemployed and/or partially or fully work-disabled, (4) have completed cancer treatment, and (5) are seeking paid employment and are motivated to initiate work immediately. Participants will primarily be identified through the Dutch Social Security Agency and the Netherlands Cancer Registry and recruited via healthcare professionals. Participants randomly allocated to the intervention group (n = 82) will receive the PLACES intervention: a tailored supported employment intervention based on the principles of Individual Placement and Support (IPS). This includes support in seeking, returning to, and maintaining paid employment. Participants allocated to the control group (n = 82) will receive care as usual. All participants will be asked to complete questionnaires, at baseline (T0), and after 3 (T1), 6 (T2), and 12 (T3) months of follow-up. The primary outcome is paid employment [yes/no]. Secondary outcomes are time until paid employment, change in working hours, work ability, quality of (working) life, and self-efficacy regarding return to work. Additionally, process and economic evaluations will be conducted.DiscussionWe hypothesize that the PLACES intervention will be effective in obtaining paid employment, enhancing work ability, and improving quality of life. In addition, we expect the intervention to be cost-effective. If proven effective and cost-effective, actions should be taken to implement the intervention in usual care.Trial registrationNCT06028048.

Analysis of Indirect Costs of Absence Associated with Mental Disorders on the Basis of Social Security Data (2012-2023).

Mental and behavioral disorders significantly impair psychophysical functioning, leading to challenges in daily activities. The increasing recognition of the importance of mental health in global development goals has resulted in its inclusion in the United Nations' Sustainable Development Goals. The burden of mental disorders has grown worldwide due to demographic changes, with substantial economic and social impacts. This study aimed to examine the indirect costs of mental disorders in Poland by analyzing the expenditures by the Social Insurance Institution (ZUS) on work incapacity benefits and disability pensions from 2012 to 2023. The goal was to identify trends, dependencies, and the economic impact of policy changes. Data were collected from ZUS reports on annual expenditures for work incapacity benefits and disability pensions. Advanced statistical methods, including linear regression and Pearson correlation, were employed to analyze trends and relationships. Student's t-tests assessed the statistical significance of the observed trends. The expenditures on benefits for work incapacity due to mental disorders increased significantly over the past decade, particularly from 2020 to 2023, partly due to the COVID-19 pandemic. Short-term absenteeism due to mental disorders accounted for 10.5% of the total sick leave days. A strong positive correlation was found between years and benefit expenditures. Conversely, the disability pension expenditures exhibited a downward trend, potentially reflecting improvements in public health or policy changes. The significant increase in expenditures on benefits related to mental disorders may reflect greater awareness, improved diagnostics, and the impact of the COVID-19 pandemic. In contrast, the decline in disability pension expenditures could suggest improved mental health or effective policy measures. However, it is important to emphasize that the presented data are not the only factor influencing this situation. Multiple variables, including societal, economic, and healthcare system changes, contribute to these trends. Therefore, further research is necessary to fully understand the underlying causes and to guide effective policy development. Regular monitoring and continued investment in mental health are essential to managing indirect costs such as absenteeism and presenteeism efficiently.

Using intervention mapping to facilitate and sustain return-to work after breast cancer: protocol for the FASTRACS multicentre randomized controlled trial

BackgroundWomen with breast cancer face many barriers to return to work (RTW) after their cancer. The main objective of the FASTRACS-RCT is to evaluate the impact of the FASTRACS (Facilitate and Sustain Return to Work after Breast Cancer) intervention on the sustainable RTW of breast cancer patients, 12 months after the end of active treatment.MethodsFASTRACS-RCT is a prospective, national, multicentre, randomized, controlled and open-label study. A total of 420 patients with early breast cancer scheduled for surgery and (neo)adjuvant chemotherapy, will be randomly assigned (1:1 ratio) to: (i) the intervention arm comprising four steps over 6 months : Handing over the intervention tools; transitional medical consultation with the general practitioner (GP); pre-RTW visit with the company’s occupational physician (OP); catch-up visit with a hospital-based RTW expert (if sick leave > 10 months) (ii) the control arm to receive usual care. The design of the FASTRACS intervention was informed by intervention mapping for complex interventions in health promotion planning, and involved patients and representatives of relevant stakeholders. Specific tools were developed to bridge the gap between the hospital, the GP, the OP and the workplace: a toolkit for breast cancer patients comprising a theory-based guide; specific checklists for the GP and the OP, respectively; and a theory-based guide for workplace actors (employer, manager, colleagues). The primary endpoint will associate sustainable RTW (full-time or part-time work at 50% or more of working time, for at least 28 consecutive days) and days off work. It will be assessed at 4, 8 and 12 months after the end of active oncological treatment. Secondary endpoints will include quality of life, anxiety, depression, RTW self-efficacy, physical activity, social support, job accommodations, work productivity, job status, and the usefulness and acceptability of the intervention’s tools.DiscussionFASTRACS-RCT will be supplemented by a realist evaluation approach aimed at understanding the influence of context in activating the intervention’s mechanisms and effects. If the expected impact of the intervention is confirmed, the intervention will be adapted and scaled-up for other cancers and chronic diseases to better integrate healthcare and work disability prevention.Trial registrationNCT04846972 ; April 15, 2021.

Experienced financial toxicity among long-term cancer survivors: results from a national cross-sectional survey.

Financial toxicity, the subjective distress caused by objective financial burden, significantly impacts cancer survivors. Yet, enduring effects on survivors remain unclear. Therefore, we investigated the experienced objective financial burden and subjective financial distress in long-term cancer survivors. A cross-sectional nationwide online survey of adult cancer survivors ≥ 5y after diagnosis were analyzed. Objective financial burden was measured via extra expenses and income loss, while subjective financial distress covered psychological well-being, coping and support-seeking behavior, and financial concerns. Groups were compared (i.e., having cancer vs. former patients) by t-tests and chi-squared tests. Financial toxicity was visualized with Sankey plots and sunburst diagrams. 4,675 respondents completed the survey, of whom 2,391 (51%) were ≥ 5y after their cancer diagnosis. Among them, 75% experienced income loss and/or extra expenses after diagnosis. One-third of the previously employed respondents relied on work disability benefits. Further, 'being unable to make ends meet' increased from 2% before diagnosis to 13% ≥ 5y after diagnosis (p < .001). Additionally, 58% reported negative psychological impacts of financial toxicity, and 47% worried about their financial future. Cancer survivors often face income loss and additional expenses, leading to ongoing financial difficulties that affect their psychological well-being. Despite this significant impact, there is a lack of guidance and support to help them manage these financial challenges. These findings highlight the need for healthcare professionals to recognize and address the financial challenges. This study underscores the widespread financial challenges cancer survivors encounter, emphasizing the need for ongoing financial support and comprehensive assessments of their physical and psychological well-being.

Anxiety and Work Disability in Patients With Immune-Mediated Inflammatory Diseases: A Cross-Sectional Study From a Single Center.

Immune-mediated inflammatory diseases (IMIDs) are chronic diseases that are associated with an inflammatory process with unclear etiology and occur in genetically predisposed individuals. In this study, inflammatory bowel disease (IBD) and rheumatic disease (RD) were examined. The aim of the research is to evaluate the relationship between IMID and state anxiety and work impairment in patients. A cross-sectional study was conducted in an outpatient clinic for rheumatology and gastroenterology at an Italian university hospital. A total of 476 patients (261 IBD and 215 RD) were considered. Patients diagnosed with IBD demonstrated significantly higher levels of anxiety, encompassing both trait and state anxiety, compared to those with RD ( p <.001). While trait anxiety exhibited a modest positive correlation with work productivity loss ( r =.163; p =.046), activity impairment showed a positive correlation with both state anxiety ( r =.243; p <.001) and trait anxiety ( r =.206; p =.002). The impact of anxiety on job performance and daily activities should not be underestimated, as it may elevate the risk of unemployment and absenteeism and lead to increased societal costs.

Embedding work coaches in GP practices: Findings from an interview-based study in the UK

BackgroundThe integration of work coaches (WCs) and disability employment advisors (DEAs) into General Practitioner (GP) practices in the UK aims to address the interplay between health and employment by facilitating access to employment support, especially to people with disabilities and health conditions affecting their ability to work. This study seeks to explore the perspectives and perceptions of WCs, DEAs and GPs regarding the benefits and challenges of embedding WCs and DEAs in GP practices. MethodsData was collected between May and July 2023 through semi-structured interviews with four GPs, four WCs and four DEAs working in NHS GP practices. The interviews were audio-recorded, transcribed verbatim and thematically analysed using the Thematic Framework method. Emergent themes were pre-structured and classified as perceived benefits, barriers and challenges or drivers and strategies. ResultsThe integration of WCs & DEAs within GP practices was perceived by respondents as fostering a direct collaboration between professionals as well as a greater openness of patients which benefited patients, WCs/DEAs and GPs. While all respondents emphasised the various benefits, they also identified several barriers and challenges. The implementation stage was perceived as particularly challenging, especially by WCs and DEAs, whereas the lack of human, financial and logistical resources hindered the service beyond this stage. Several strategies and drivers to support the service were identified, including the importance of receiving support from all professionals involved as well as making the service visible to both healthcare professionals and patients. ConclusionEmbedding WCs and DEAs in GP practices emerges as a promising approach which can benefit patients, GPs and WCs/DEAs. Exploring patients' perspectives directly is crucial to fully assess this type of service and identify any additional challenges and benefits.

The Impact of Employment Status and Educational Level on Marriage Experience among Male and Female Disabled Workers in their 20s and 30s: Mediation by Wage Level

The Impact of Employment Status and Educational Level on Marriage Experience among Male and Female Disabled Workers in their 20s and 30s: Mediation by Wage Level

Preventive and Creative Approaches to Social Work Practice: Understanding and Responding to the Needs of Families with Children with Disabilities and Additional Needs

To address the gap in preventative support, the aim of the Family Disability Worker (FDW) role is to offer support for parents and cares of children with disabilities and additional needs, who do not meet the criteria to access services through the children with disabilities social work team. This Welsh evaluation included a survey for professionals (n = 23) and parents/carers (n = 5) to explore their attitudes on the new FDW role. Following this, a series of semi-structured interviews were completed to gather the experiences of professionals (n = 23) and parents/carers (n = 3) of working with the FDW. The findings suggest the development of preventive social work practice to reduce isolation and support these families to feel connected to their community. The participants shared attitudes and experiences supporting the development of the FDW role, to enhance and develop creative and strength-based approaches to social work practice to be operationalised through a new FDW practice toolkit.

How do unemployed individuals with work disability make sense of work while seeking to return-to-work?

How do unemployed individuals with work disability make sense of work while seeking to return-to-work?

How Work Becomes Invisible: The Erosion of the Wage Floor for Workers with Disabilities

How does work come to be constructed as a service to the worker? In the United States, the payment of subminimum wages to disabled workers has been legal since 1938 and was entrenched by 1986 legislation eliminating the previously mandated floor of 50 percent of the minimum wage. This article draws on primary historical materials to explain the passage of these amendments, which I analyze as a case of delaborization, a process through which work is mystified as such and reclassified as something else (e.g., service). I find that the managers of segregated workshops for disabled manual laborers rose to control disability employment policy in the aftermath of deinstitutionalization. Professionals mobilized disability stigma to frame the subminimum wage as a social welfare issue subject to their expertise and to lobby successfully for its entrenchment. Weaknesses in the disability–labor coalition enabled this seizure of jurisdiction. This research illuminates professional expertise, the withdrawal of labor unions, and identity-based stigma as major mechanisms driving delaborization, an important contemporary influence on the organization of work. The case of the subminimum wage thus develops sociological literatures on labor, disability, and politics.

RESTART: a stepped-care approach to facilitate return to work for employees with psychological distress: design of a randomized controlled trial

BackgroundCommon mental health problems, such as stress, anxiety and depression, are highly prevalent among workers and often lead to long-term absenteeism and work disability. Effective elements found in previous researched interventions were to explicitly focus on return to work (RTW) and not solely on symptom reduction, to take into account the employees’ cognition towards RTW and to include the workplace environment. Based on these elements, a stepped-care approach was developed. The aim of this paper is to present the study design of a randomized controlled trial (RESTART), evaluating the effectiveness of the stepped-care approach on lasting RTW and the implementation process.MethodsRESTART is a randomized controlled trial with a 2 × 2 factorial design and a follow-up of one year. Employees eligible for this study are those who reported sick within 2 to 8 weeks with psychological distress based on a distress screener. Participants will be randomized to a group receiving a tailored e-Health app or usual care, as well as randomized to a group receiving a Participatory Approach (PA; conversational method) in the workplace or usual care. The PA will however only be provided in case of persistent sickness absence at 8 weeks. Measurements take place at baseline, after the e-Health intervention period (3 months), and after the PA intervention period (6 months) and 12 months. Primary outcome is lasting RTW, defined as full RTW in previous or equal work for at least four consecutive weeks. Secondary outcomes are (the severity of) stress-related symptoms, total number of sickness absence days, self-efficacy for RTW and self-reported health. A process evaluation including a realist evaluation will also be conducted.DiscussionEarly intervention that focuses on RTW, the cognition towards RTW despite symptoms and involves the workplace environment, plays a crucial role in managing sickness absence among employees with psychological distress. If effective, the stepped-care approach is relevant for employees, employers and society as a whole.Trial RegistrationISRCTN: 90663076. Registered on 5 October 2023.

Identifying phenotypes in persons with temporomandibular disorders, using latent class analyses: Temporomandibular disorders and phenotypes.

The heterogeneity of persons with temporomandibular disorders (TMD) and the lack of effective treatments have called for a biopsychosocial model and the development of a more personalised treatment approach. Emphasis on phenotypes might be a beneficial approach. Identifying phenotypes among persons with TMD using potential prognostic factors, including personal characteristics and responses to clinical tests. Additionally, examining the distribution of TMD diagnoses within the identified phenotypes. A cross-sectional study including 208 persons (85% females) seeking physiotherapy for problems in the temporomandibular area. All participants were examined clinically and answered questionnaires electronically. The phenotypes were identified using latent class analysis based on seven potential prognostic factors selected within pain, function and psychological domains. Table analysis was used to explore the distribution of TMD diagnoses within the identified phenotypes. Most participants fit into one of three identified phenotypes. Phenotype 1 (32%) was characterised by functional disability, low psychosocial scores and low risk for developing chronicity and future work disability; Phenotype 2 (29%) by parafunctional habits, low psychosocial score and seeking treatment to reduce pain; and Phenotype 3 (39%) by high levels of mental distress, fear avoidance and a large risk of future work disability. Intra-articular disorders dominated Phenotype 1, myalgia and TMD-related headache Phenotype 2, while Phenotype 3 included all the different TMD diagnoses. The knowledge about the three identified phenotypes might be useful for clinicians treating persons with TMD and for the development of preventive strategies and more personalised treatment.

Incidence, trends and factors associated with psychological injury among health and social care workers in New South Wales, Australia: a retrospective cohort study of workers' compensation claims.

To describe and compare the incidence and trends of workers' compensation (WC) claims for psychological injury: (1) between health and social care (HSC) industry and other industries; (2) among specific occupations in the HSC industry; and (3) to determine if psychological injury claim rates differ by age and gender in the HSC industry and among specific occupations. A retrospective cohort study was conducted using data from the New South Wales WC system. Workers with accepted psychological injury claims between July 2012 and June 2021 were included. Negative binomial regression models were employed to estimate incidence rate ratios and 95% CIs. The HSC industry had a higher incidence (2.4 per 1000 workers) than all other industries combined (1.1 per 1000 workers). In the HSC industry, the incidence increased from 1.8 in 2013-2015 to 3.4 in 2019-2021. Ambulance officers had the highest incidence (24.9 per 1000 workers) and the highest growth rate. Nurses and midwives, and aged and disability care workers also had fast-growing incidence over the 9 years. Risk of psychological injury claims was highest among female workers and older adults. The increasing incidence and trend of psychological injury claims among HSC workers in New South Wales signify a growing public health issue. Greater efforts are needed to prevent work-related psychological injury in the HSC industry and support affected workers. The different patterns of psychological injury claims across occupations suggest that interventions should be tailored to each occupational group.

Medication management issues perceived by pharmacists and disability caregivers while supporting people with disability

BackgroundAustralia has a notable gap in guidance for pharmacists, caregivers and disability service providers in: (i) supporting people with disabilities (PWD) within the medication management cycle, (ii) understanding their obligations for providing high quality care, and (iii) preventing medication-related harm. ObjectiveThe objective of this study was to identify medication management issues for PWD from the perspective of disability caregivers and pharmacists when supporting PWD with their medication. MethodsA qualitative study design using semi-structured interviews of pharmacists and disability caregivers was undertaken across six different states or territories in Australia. ResultsInterviews were conducted with registered pharmacist participants (n=10), and disability workers (n=10). Seven themes emerged for both pharmacists and caregivers, with most sub-themes and codes concordant between the two cohorts. Clinical issues, particularly related to polypharmacy and psychotropic use; confidence in providing medicines and medication information accurately to PWD; practical and behavioural issues caregivers experienced when administering medication; challenges in providing individualised and person-centred care to PWD; inadequate communication and transfer of information between healthcare professionals, caregivers, and PWD; insufficient disability awareness training for pharmacists and medication training for caregivers; and challenges working with provider organisations within the current practice environment were described. ConclusionsThis study highlighted seven areas where issues were perceived to arise in medication management for PWD. By understanding the issues perceived by those directly providing care, it may be possible to improve medication management. Further research is needed to understand the perceived role of pharmacists in supporting medication management for PWD and their caregivers, and how enabling pharmacists scope might reduce medication-related risks and support QUM in this sector.

Unpacking how trust, communication and flow interact to sustain quality relationships between disabled people, family and support workers: a realist qualitative study

Purpose Many disabled people require support workers to complete personal care, daily tasks and participate in life roles. Due to the intimate nature of community disability support in domestic environments, understanding what facilitates positive relationships is paramount. We examined the intricate interplay of context and mechanisms that drive positive relationship outcomes for disabled people, their family members and support workers. Methods A realist-informed, participatory methodology involving three participant groups: disabled people, family members, and disability support workers. Results Sixteen participants participated in two workshops per group (5 disabled people, 5 family members, and 6 disability support workers). All three participant groups prioritised three key generative mechanism processes involved in positive relationship outcomes: (1) having clear communication, (2) building trust, and (3) developing a sense of flow. We describe how each mechanism manifested in a unique way for each group, and also how the activation of each mechanism was influenced by a dynamic resources/tensions balance specific to each group. Conclusion We describe the interaction between three mechanism processes involved in triadic relationships between disabled people, family members, and support workers. Attention is now required to explore strategies to negotiate the resource/tension balance particular to each group.

Experiences of participation in people with intellectual disability, in relation to service support received, and views from professionals in the field of disability.

Purpose: to describe experiences of people with intellectual disability of participating in the cognitive adapted annual national user survey of social services, and their perception of participation in the municipalities' improvement work. Additionally, social service professionals' views of opportunities to involve people with intellectual disability in improvement work based on survey results. Methods: Focus groups of people with intellectual disability and individual interviews with professionals were conducted and analysed, using content analysis. Results: People with intellectual disability expressed they felt listened to, and supported in expressing their views, but there was discrepancy between their and professionals' perceptions of whether their views were considered, and if they were involved in the improvement process. Conclusions: Evaluating services received from social services is important, expressed by people with intellectual disability and professionals, but improvement is needed to feed back results to social services clients, and to involve them in the improvement process.