Effect of stress-based interventions on the quality of life of people with an intellectual disability and their caregivers.

PURPOSE: People with intellectual disabilities often show challenging behaviour, which can manifest itself in self-harm or aggression towards others. Real-time monitoring of stress in clients with challenging behaviour can help caregivers to promptly deploy interventions to prevent escalations, ultimately to improve the quality of life of client and caregiver. This study aimed to assess the impact of real-time stress monitoring with HUME, and the subsequent interventions deployed by the care team, on stress levels and quality of life. MATERIALS AND METHODS: Real-time stress monitoring was used in 41 clients with intellectual disabilities in a long-term care setting over a period of six months. Stress levels were determined at the start and during the deployment of the stress monitoring system. The quality of life of the client and caregiver was measured with the Outcome Rating Scale at the start and at three months of use. RESULTS: The results showed that the HUME-based interventions resulted in a stress reduction. The perceived quality of life was higher after three months for both the clients and caregivers. Furthermore, interventions to provide proximity were found to be most effective in reducing stress and increasing the client's quality of life. CONCLUSIONS: The study demonstrates that real-time stress monitoring with the HUME and the following interventions were effective. There was less stress in clients with an intellectual disability and an increase in the perceived quality of life. Future larger and randomized controlled studies are needed to confirm these findings.

Assistive technology such as real-time stress monitoring enables caregivers to timely intervene and contributes to the reduction of challenging behaviour.Real-time stress monitoring contributes to the quality of life of clients and caregivers in healthcare.There is a reduction in the levels of stress of people with an intellectual disability by using stress-monitoring technology.

Real-time stress detection based on artificial intelligence for people with an intellectual disability.

People with severe intellectual disabilities (ID) could have difficulty expressing their stress which may complicate timely responses from caregivers. The present study proposes an automatic stress detection system that can work in real-time. The system uses wearable sensors that record physiological signals in combination with machine learning to detect physiological changes related to stress. Four experiments were conducted to assess if the system could detect stress in people with and without ID. Three experiments were conducted with people without ID (n = 14, n = 18, and n = 48), and one observational study was done with people with ID (n = 12). To analyze if the system could detect stress, the performance of random, general, and personalized models was evaluated. The mixed ANOVA found a significant effect for model type, F(2, 134) = 116.50, p < .001. Additionally, the post-hoc t-tests found that the personalized model for the group with ID performed better than the random model, t(11) = 9.05, p < .001. The findings suggest that the personalized model can detect stress in people with and without ID. A larger-scale study is required to validate the system for people with ID.

EMDR treatment for people with intellectual disabilities: a systematic review about difficulties and adaptations.

Introduction: People with intellectual disabilities (ID) are at increased risk for developing Post Traumatic Stress Disorder (PTSD). Emerging evidence indicates that Eye Movement Desensitization and Reprocessing (EMDR) therapy is feasible and potentially effective for this group. However, communication, cognition, stress regulation, and attachment difficulties may interfere with the EMDR process. Adaptation of the EMDR protocol seems therefore required for this population. Aim: This review aims to systematically identify and categorize the difficulties in applying EMDR to people with ID and the adaptations made by therapists to overcome these challenges. Methods: A literature search was performed in May 2023. Article selection was based on inclusion and exclusion criteria and quality appraisal. Results: After screening, 13 articles remained for further review. The identified difficulties and adaptations were categorized into the three domains of adaptive functioning (i.e., conceptual, social, and practical functioning). Considerable difficulties in applying the EMDR protocol for this group were reported. The adaptations made by therapists to overcome these difficulties were highly variable. They could be divided into three main categories: adaptions in EMDR delivery (e.g., tuning to the developmental level of the client, simplifying language, decreasing pace), involvement of others (e.g., involving family or support staff during or in between sessions), and the therapeutic relationship (e.g., taking more time, supportive attitude). Discussion: The variability of the number of mentioned difficulties and adaptations per study seems to be partly related to the specific EMDR protocol that was used. In particular, when the Shapiro adult protocol was administered, relatively more detailed difficulties and adaptations were described than in publications based on derived existing versions of an EMDR protocol for children and adolescents. A probable explanation is that already embedded modifications in these protocols facilitate the needed attunement to the client's level of functioning. Practical implications: The authors of this review suggest that EMDR protocols for children and adolescents could be adapted for people with an intellectual disability. Further research should focus on the involvement of trusted others in EMDR therapy for people with ID and the therapeutic relationship from an attachment and relational-based perspective.

[Pain and neurocognitive disorders: current state of the art and remaining challenges]. / Pijn en neurocognitieve stoornissen: stand van zaken en de weg nog te gaan.

The detection and treatment of pain is hampered by cognitive disorders. In this review we discuss the epidemiology of pain in cognitive disorders, and elaborate further on the current state of the art on pain in these populations. We will specifically highlight current gaps and recommendations for the future for the following knowledge domains: 1) Biology and neuropathology,  2) Assessment and evaluation, 3) Treatment and management , and 4) Contextual factors such as the organization and education.  We identify the following knowledge gaps: 1) (Biology): Do pain experience and pain expressions change in different types of cognitive disorders, and how? 2) (Assessment): How to recognize, evaluate and assess pain, in case the self-report of pain is no longer reliable? 3) (Treatment): Which treatment possibilities are effective? How can we organize this in an interdisciplinary way? And how to monitor this? How can we ensure proper implementation of pain assessment and treatment in clinical practice? Specifically with regard to non-pharmacological treatment, how can we communicate observations from different disciplines, family members and clinicians to improve the detection of pain as well as treatment monitoring/evaluation? 4) (Contextual): How can we increase knowledge and skills on pain in cognitive impairment within educational training?

Cancer Pain in People With Intellectual Disabilities: Systematic Review and Survey of Health Care Professionals.

CONTEXT: Owing to life expectancy improvements for people with intellectual disabilities, their risk of developing cancer is increasing. Pain is an inevitable aspect of cancerous diseases. However, as pain experience and expression can be atypical in people with intellectual disabilities, this population is vulnerable to late diagnosis of cancer and undertreatment of cancer pain. OBJECTIVES: The objective of this study was to investigate what is currently known about cancer pain in people with intellectual disabilities and provide specific recommendations to improve this knowledge. METHODS: A systematic review using PubMed, PsycINFO, and CINAHL and an anonymous online survey of Dutch health care professionals were conducted. RESULTS: From 10,146 publications, with intellectual disabilities in the title, and pain or cancer in the title or abstract, 11 articles underwent qualitative synthesis. Discussions within these articles were predominantly unspecific and brief, frequently indicating challenges in symptom presentation, communication, as well as assessment and treatment of cancer pain. The survey received 102 responses. The 63 health care professionals experienced with cancer in people with intellectual disabilities indicated challenges recognizing, assessing, and treating their cancer pain. CONCLUSION: Cancer pain in people with intellectual disabilities is a topic lacking specific and comprehensive research within scientific literature. We suggest this is due to inherent difficulties regarding the complex interplay of comorbidities and communication issues in people with intellectual disabilities.

Pain and Cognitive Functioning in Adults with Down Syndrome.

OBJECTIVE: The aim of the present study was to examine whether cognitive functioning (i.e., memory and executive functioning) is related to self-reported presence of pain (i.e., affirmative answer to the question whether the individual feels pain) and experience of pain (i.e., intensity and affect) in adults with Down syndrome (DS). DESIGN, SETTING, AND SUBJECTS: Cross-sectional study of 224 adults with DS (mean age = 38.1 years, mild-severe intellectual disabilities) in the Netherlands. METHODS: File-based medical information was evaluated. Self-reported presence and experience of pain were assessed during a test session, both in rest and after movement (affect with the facial affective scale [FAS], intensity with the numeric rating scale [NRS]). Neuropsychological tests for memory and executive functioning were used. RESULTS: Participants with lower memory scores were more likely to report the presence of pain, while controlling for age, gender, physical conditions that may cause pain, language comprehension, and vocabulary ( p = .030, 58.4% classification rate, N = 154). No statistically significant associations were found between executive functioning and self-reported presence of pain or between cognitive functioning and self-reported pain experience. CONCLUSIONS: Memory seems to be related to the self-reported presence of pain in adults with DS after explicit inquiry, although the clinical use of this model is yet limited. Therefore, further research is needed for insight into the role of cognitive processes in self-report (e.g., involving aspects such as acquiescence and repeated measurements) to evaluate whether neuropsychological examination could contribute to pain assessment in DS.

Self-Reported Presence and Experience of Pain in Adults with Down Syndrome.

OBJECTIVE: The aim was to examine whether the presence of pain (based on physical conditions and participants' report) and self-reported pain experience in adults with Down syndrome (DS) differ from general population controls. DESIGN: Cross-sectional study of 224 adults with DS (mean age = 38.1 years, mild-severe intellectual disabilities) and 142 age-matched controls (median age = 40.5 years, mean estimated IQ = 105.7) in the Netherlands. METHODS: File-based medical information was evaluated. Self-reported presence and experience of pain were assessed in rest and after movement during a test session (affect with facial affective scale (FAS: 0.04-0.97), intensity assessed with numeric rating scale (NRS: 0-10). RESULTS: Compared with controls, more DS participants had physical conditions that may cause pain and/or discomfort ( p = .004, 50% vs 35%), but fewer DS participants reported pain during the test session ( p = .003, 58% vs 73%). Of the participants who indicated pain and comprehended self-reporting scales ( n = 198 FAS, n = 161 NRS), the DS group reported a higher pain affect and intensity than the controls ( p < .001, FAS: 0.75-0.85 vs 0.50-0.59, NRS: 6.00-7.94 vs 2.00-3.73). CONCLUSIONS: Not all adults with DS and painful/discomforting physical conditions reported pain. Those who did indicated a higher pain experience than adults from the general population. Research into spontaneous self-report of pain, repeated pain assessment, and acute pain is needed in people with DS for more insight into pain experience and mismatches between self-report and medical information.

Apolipoprotein E ɛ4, Cognitive Function, and Pain Experience in Down Syndrome: A Pilot Study.

OBJECTIVE: The presence of apolipoprotein E (ApoE) ɛ4 allele might be related to higher pain experience due to increased risk for potentially painful physical conditions and cognitive impairment (less efficient coping with pain). This hypothesis is clinically relevant to examine in adults with Down syndrome (DS) because they are at risk for painful physical conditions, their presence of ApoE ε4 is related to cognitive impairment, and their pain experience is unclear. The present pilot study addressed the associations between ApoE genotype, cognition, and pain in DS. METHOD: DNA analysis of saliva, neuropsychological tests (assessing memory and executive functioning), and self-reporting pain scales (in rest and after movement) were used with a cross-sectional design in 146 adults with DS (mean age 39.1 years, mild to moderate intellectual disabilities, 46% men, 30% ApoE ɛ4 carrier). RESULTS: The difference between ApoE ɛ4 carriers and noncarriers was not statistically significant for cognitive function, pain experience, and prevalence of potentially painful conditions. Among ɛ4 carriers, the presence of potentially painful conditions was associated with worse executive functioning (p = .022, r = .39). CONCLUSIONS: The clinical implication of the results is that ApoE ɛ4 in DS may play a role in pain, although the theoretical explanation via associations with pain experience and cognition remains unclear. Further research should include a large sample of adults with DS selected on diagnosed painful conditions to obtain more insight into the possible role of ApoE genotype (and its association with cognition) in the pain experience of this target group.

Self-Reporting Tool On Pain in People with Intellectual Disabilities (STOP-ID!): a Usability Study.

The use of the Self-reporting Tool On Pain in people with Intellectual Disabilities (STOP-ID!), an online application developed by the authors to aid in the self-reporting of pain, was evaluated in 40 adults with Down syndrome. Comprehension of the use of the tool (the ability to recognize representations for vocabulary and pain, and to navigate the tool interface), and the use of the tool to self-report pain experience, were investigated. The use of the online tool was investigated with both a laptop and a tablet computer in a crossover design. The results provide evidence that more participants recognized representations of pain location and pain affect than representations of pain intensity and pain quality. A small percentage of participants demonstrated the ability to recognize all of the representations of vocabulary items and to navigate the tool without assistance (18% laptop, 18% tablet). Half of the participants were able to report at least one pain component of a current or remembered pain experience without assistance (50% laptop, 53% tablet). Ways to improve the design of tools for reporting pain and to improve performance are suggested.

Quantitative sensory testing of temperature, pain, and touch in adults with Down syndrome.

The spinothalamic pathway mediates sensations of temperature, pain, and touch. These functions seem impaired in children with Down syndrome (DS), but have not been extensively examined in adults. The objective of the present study was to compare the spinothalamic-mediated sensory functions between adults with DS and adults from the general population and to examine in the DS group the relationship between the sensory functions and level of intellectual functioning. Quantitative sensory testing (QST) was performed in 188 adults with DS (mean age 37.5 years) and 142 age-matched control participants (median age 40.5 years). Temperature, pain, and touch were evaluated with tests for cold-warm discrimination, sharp-dull discrimination (pinprick), and tactile threshold, respectively. Level of intellectual functioning was estimated with the Social Functioning Scale for Intellectual Disability (intellectual disability level) and the Wechsler Preschool and Primary Scale of Intelligence--Revised (intelligence level). Overall, the difference in spinothalamic-mediated sensory functions between the DS and control groups was not statistically significant. However, DS participants with a lower intelligence level had a statistically significant lower performance on the sharp-dull discrimination test than DS participants with higher intelligence level (adjusted p=.006) and control participants (adjusted p=.017). It was concluded that intellectual functioning level is an important factor to take into account for the assessment of spinothalamic-mediated sensory functioning in adults with DS: a lower level could coincide with impaired sensory functioning, but could also hamper QST assessment.

Behavioral pain indicators in people with intellectual disabilities: a systematic review.

UNLABELLED: People with intellectual disabilities (IDs) have a higher risk of painful medical conditions. Partly because of the impaired ability to communicate about it, pain is often undertreated. To strengthen pain assessment in this population, we conducted a systematic review to identify behavioral pain indicators in people with IDs by using Embase, PubMed, PsycINFO, CINAHL, and Cochrane. Inclusion criteria were 1) scientific papers; 2) published in the last 20 years, that is, 1992 to 2012; 3) written in English, 4) using human subjects, 5) intellectual disabilities, 6) pain, 7) behavior, and 8) an association between observable behavior and pain experience. From 527 publications, 27 studies were included. Pain was acute in 14 studies, chronic in 2 studies, both acute and chronic in 2 studies, and unspecified in 9 studies. Methodological quality was assessed with the Mixed Methods Appraisal Tool. Of the 14 categories with behavioral pain indicators, motor activity, facial activity, social-emotional indicators, and nonverbal vocal expression were the most frequently reported. Most of the behavioral pain indicators are reported in more than 1 study and form a possible clinical relevant set of indicators for pain in people with IDs. Determination of a behavioral pattern specific for pain, however, remains a challenge for future research. PERSPECTIVE: This review focuses on categories of behavior indicators related to pain in people with IDs. The quality of evidence is critically discussed per category. This set of indicators could potentially help clinicians to recognize pain in this population, especially when unique individual pain responses are also identified.