Adult Services Research Articles

Towards needed improvements in inherited metabolic medicine in adulthood: The SIMMESN adult metabolic working group and MetabERN Joint Position Statement

Inherited metabolic disorders (IMDs), previously considered as a paediatric sub-specialisation are more and more prevalent in adults, thanks to improved survival, and the expansion of diagnostic tools detecting attenuated–late onset forms in adulthood. Italy is one of the countries with the highest number of IMDs screened by dry blood spots in neonates, allowing them to receive early treatments and to reach adult age. Despite this, awareness of IMDs is still low by the adult medical community, with difficulties in transition and transfer of patients to adult services and unmet patient needs. In 2022, a collaboration between the adult metabolic working group of the Italian Society for the Study of Inherited Metabolic Disorders and Neonatal Screening (SIMMESN) and the European Reference Network for Hereditary Metabolic Disorders (MetabERN) was established to face problems linked to IMDs in adulthood. “The Statement of Udine” was developed to guide further steps towards improvements in inherited metabolic medicine in adults, referencing the experience from the UK. The aim of this paper is to present “The Statement of Udine” explaining its background and its possible applications.

중고령 장애인의 주관적 건강 궤적 영향요인-비장애인과의 비교

This study examines whether and how self-rated health (SRH) changes among middle-aged and older adults with disabilities compared to adults without disabilities. From the Korean Welfare Panel Survey encompassing the 7th (2012) to the 16th (2021). the study extracted 836 adults with disabilities aged 50 or older and 4,258 adults without disabilities. Potential growth models (unconditional and conditional models) were analyzed to identify subjective health changes and factors influencing such changes. Multi-group comparison analysis method was adopted to examine differences by disability. In the unconditional model analysis, the SRH of both adults with disabilities and adults without disabilities tended to decrease gradually over time. Adults with disabilities had a lower initial value of SRH than adults without disabilities, but there was little difference in the rate of change. In the conditional model analysis, gender, age, household income, health checkups, risk of drinking, family relationship satisfaction, social relationship satisfaction, and leisure activity satisfaction variables were the factors affecting the initial values of SRH of adults with and without disabilities. Looking at the influencing factors by disability, it was found that the effect of education training was significant for adults with disabilities, and the effect of smoking was significant for adults without disabilities.The effects of age and smoking were more significant in adults without disabilities, and the effects of the number of years of education and health checkups were more significant in adults with disabilities. Volunteer activities are positively associated with the rate of change in SRH regardless of disability. On the other hand, dangerous drinking had a significant effect on the rate of change in SRH of adults with disabilities, and having medical checkups had a significant effect on that of adults without disabilities. The results suggest that health promotion policies and services for middle-aged and older adults with disabilities need to reflect their characteristics compared or contrasted with middle-aged and older adults without disabilities.

Association of frailty with the use of health services in older adults. A secondary analysis of the Mexican Health and Aging Study

Association of frailty with the use of health services in older adults. A secondary analysis of the Mexican Health and Aging Study

Global availability and uptake of psychological services for adults, caregivers and children with food allergy.

Food allergy (FA) is associated with poor health-related quality of life and high levels of psychological distress. Psychological support is extremely important but not always available. As part of the Global Access to Psychological Services for Food Allergy (GAPS) study, we aimed to assess psychological distress and service use among adults, caregivers and children with FA in a global survey. Participants (n = 1329 adults with FA; n = 1907 caregivers of children with FA) from >20 countries were recruited through patient organisations, social media advertisements and online survey panels to complete an online survey. Surveys were available in six languages. A total of 67.7% of adults and 77.2% of caregivers reported direct experience, and 51.6% of caregivers said their child had experienced FA-related psychological distress. The most commonly reported issue was anxiety about having an allergic reaction. Less than 20% had been assessed for FA-related psychological distress. There were significant differences across countries for levels of distress, screening for distress, seeing a mental health professional and being diagnosed with a FA-related mental health disorder (all p < .001). The United Kingdom, Australia and Brazil had the highest number of participants reporting distress. The most commonly reported barrier to seeing a mental health professional was cost. FA-related distress is common across countries, but with substantial country-to-country variability. Allergy providers are encouraged to routinely assess families for psychological distress and provide access to appropriate mental health resources. Development and implementation of evidence-based, patient-informed accessible, affordable FA interventions in multiple languages is urgently needed.

Accessibility to palliative care services in Colombia: an analysis of geographic disparities

ObjectivesDue to the increase in the prevalence of non-communicable diseases and the Colombian demographic transition, the necessity of palliative care has arisen. This study used accessibility and coverage indicators to measure the geographic barriers to palliative care.MethodsPopulation-based observational study focused on urban areas and adult population from Colombia, which uses three measurements of geographic accessibility to services: a) density of palliative care services per 100,000 inhabitants, b) analysis of geographic distribution by territorial nodes of the country, and c) spatial analysis of palliative care services using Voronoi diagrams. ArcGIS Pro software was used to map services’ locations and identify geographic disparities.ResultsA total of 504 palliative care services were identified, of which 77% were primary health care services. The density of palliative care services in Colombia is 1.8 primary care services per 100,000 inhabitants and 0.4 specialized services per 100,000 inhabitants. The average palliative care coverage is 41%, two regions of the country have a coverage below 30%. Twenty-eight percent of the services provide care for a population greater than 50,000 inhabitants within their coverage area, exceeding the acceptable limit by international standards.ConclusionsPalliative care services are concentrated in three main regions (Bogotá D.C., the Center, and the Caribbean) and are limited in the Orinoquia and Amazonia nodes. Density of specialized palliative care services is extremely low and there are regions without palliative services for adults with palliative needs.

Urgent need to improve dental services for older adults in Hong Kong

Urgent need to improve dental services for older adults in Hong Kong

Social connection and self-neglect: A case for broader exploration.

Self-neglect (SN) is the most common report to Adult Protective Services (APS) and is associated with significant morbidity and mortality risks for older adults. Lack of instrumental support is a well-evidenced etiologic factor in the development and continuation of SN, but little is known about other modifiable social connection characteristics. The social connection framework provides evidence-based characteristics across structure, function, and quality missing from SN studies that could be identified if explored. These factors could provide prevention and intervention targets related to poor health. A narrative case study is presented using quantitative and qualitative data to explore social connection across structure, function, and quality in the context of SN. The findings highlight the complexity of social connection that may be observed in SN cases reported to APS. Strategic utilization of direct and indirect social interventions to support social connection in this case are presented. The results from this case give rise to considerations that may be generalizable to other SN cases. Recommendations for future research on social connection in this population are provided.

189-OR: Food Insecurity and Inability to Obtain Recommended Medications, Diabetes Technology, and Multidisciplinary Services in Youth and Young Adults with Diabetes

189-OR: Food Insecurity and Inability to Obtain Recommended Medications, Diabetes Technology, and Multidisciplinary Services in Youth and Young Adults with Diabetes

1957-LB: Transition between Pediatric and Adult Diabetes Services—The Experiences and Perceptions of Health Care Professionals Worldwide

1957-LB: Transition between Pediatric and Adult Diabetes Services—The Experiences and Perceptions of Health Care Professionals Worldwide

Services for older adults in rural primary care memory clinic communities and surrounding areas: a qualitative descriptive study

Background/ObjectivesAs part of a larger study, and in collaboration with rural primary health care teams, RaDAR (Rural Dementia Action Research) primary care memory clinics have evolved and continue to spread in communities across southeast Saskatchewan, Canada. This study focuses on the geographical areas of the four communities where RaDAR memory clinics were first developed and implemented and describes the services and supports available to older adults including memory clinic patients and families living in these areas. Our goal was to identify and describe existing programs and gaps, create inventories and maps, and explore the service experiences of family caregivers of people living with dementia in these rural areas.MethodsUsing a qualitative descriptive design, an environmental scan of services was conducted from December 2020 to April 2021 using focus groups (n = 4) with health care providers/managers (n = 12), a secondary source (e.g., program brochures) review, and a systematic internet search targeting four RaDAR memory clinic communities and surrounding areas via community websites, online resources, and the 211 Saskatchewan service database. Data were analyzed using content analysis; findings informed semi-structured interviews with caregivers (n = 5) conducted from March to July 2022, which were analyzed thematically. Geographic areas explored in this study covered an area of approximately 5666 km2.ResultsFrom the scan, 43 services were identified, categorized into 7 service types, and mapped by location. Seventeen services were dementia-related. Services included social/leisure activities (n = 14), general support/referrals (n = 13), transportation (n = 7), information/education (n = 4), respite (n = 2), in-home care (n = 2), and safety (n = 1). Service levels included local (n = 24), provincial (n = 17), and national (n = 2), and were offered in-person, remotely (or both) with 20 services across 4 service types offered remotely. In general, most services had no fees, involved self-referral, and providers had a range of education/training. Key interview themes reflected the need for locally available, accessible services that offer (i) individualized, flexible, needs-based approaches, (ii) in-home care and continuity of care, and (iii) both formal and informal supports. Key gaps were identified, including (i) locally accessible, available services and resources in general, (ii) dementia-related training and education for service providers, and (iii) awareness of available services. Benefits of services, consequences of gaps, and recommendations to address gaps were reported. In general, service providers and program participants were an even mix of females and males, and program content was gender neutral.ConclusionsFindings highlight a range of available services, and a number of varied service-user experiences and perspectives, in these rural areas. Key service gaps were identified, and caregivers made some specific recommendations to address these gaps. Findings underscore multiple opportunities to inform service delivery and program participation for rural and remote people living with dementia and their families.

Mothers' and their children's emotional and behavioral symptom trajectories and subsequent maternal adjustment: Twenty-seven years of motherhood

BackgroundThis study aims to describe maternal depressive symptoms (MDS) trajectories in a longitudinal study extending from pregnancy to 27 years after the birth of the firstborn child. We also explored the associations of both MDS trajectories and child internalizing and externalizing problem trajectories with maternal adjustment (adaptive functioning, emotional and behavioral problems). MethodsThe population-based study was conducted in Tampere, Finland, and the sample comprised 356 first-time mothers. MDS were screened with the Edinburgh Postnatal Depression Scale during pregnancy, first week after delivery, 2 and 6 months postnatally, and when the child was 4–5, 8–9, 16–17, and 26–27 years of age. The internalizing and externalizing problems of the children were assessed with the Child Behavior Checklist when the child was 4–5, 8–9, and 16–17 years of age. Maternal adaptive functioning and internalizing and externalizing problems were assessed with the Adult Self Report at 26–27 years after the birth of the first child. Complete follow-up data were available for 168 mothers. ResultsWe describe a three-group trajectory model of MDS (High Stable, Low Stable, Very Low). Elevated depressive symptom patterns were associated with less optimal maternal outcomes regarding both adaptive and problem dimensions. The child's internalizing and externalizing problem trajectories were associated with maternal internalizing and externalizing problems but not with maternal adaptive functioning. LimitationsMaternal and child measures were based on maternal reports only. ConclusionsThe interconnectedness of the well-being of the mother and child should be noted in health and mental health services for adults and children.

Involved but not included: young carers’ experiences of professional support while growing up with a parent with mental ill-health

ABSTRACT Children growing up with a parent with mental ill-health are a hidden and vulnerable group. Positioned at the intersection between adult and children services, and health and social care, these children fall between the gaps, rarely acknowledged in policy or practice. This is exacerbated when the young person is excluded under the auspices of patient confidentiality and age appropriateness. This article reports findings from research which captured young carers’ retrospective accounts of professional support when caring for a parent with mental illness. Participants in this research study described being ‘involved but not included’; they provided significant care to their parent and were relied on by professionals to provide support. However, they were simultaneously omitted from any discussion or understanding of the decisions made. This article explores the relevance of these accounts for current service provision. It concludes with recommendations for involving young carers in care planning and ensuring that young carers have their own needs assessed and acknowledged by professionals.

Measuring self and informant perspectives of Restricted and Repetitive Behaviours (RRBs): psychometric evaluation of the Repetitive Behaviours Questionnaire-3 (RBQ-3) in adult clinical practice and research settings

BackgroundBrief questionnaires that comprehensively capture key restricted and repetitive behaviours (RRBs) across different informants have potential to support autism diagnostic services. We tested the psychometric properties of the 20-item Repetitive Behaviours Questionnaire-3 (RBQ-3), a questionnaire that includes self-report and informant-report versions enabling use across the lifespan.MethodIn Study 1, adults referred to a specialised adult autism diagnostic service (N = 110) completed the RBQ-3 self-report version, and a relative or long-term friend completed the RBQ-3 informant-report version. Clinicians completed the abbreviated version of the Diagnostic Interview for Social and Communication Disorders (DISCO-Abbreviated) with the same adults as part of the diagnostic process. For half of the assessments, clinicians were blind to the RBQ-3 ratings. We tested internal consistency, cross-informant reliability and convergent validity of the RBQ-3. In Study 2, a follow-up online study with autistic (N = 151) and non-autistic (N = 151) adults, we further tested internal consistency of the RBQ-3 self-report version. We also tested group differences and response patterns in this sample.ResultsStudy 1 showed good to excellent internal consistency for both self- and informant-report versions of the RBQ-3 (total score, α = 0.90, ω = 0.90, subscales, α = 0.76-0.89, ω = 0.77-0.88). Study 1 also showed cross-informant reliability as the RBQ-3 self-report scores significantly correlated with RBQ-3 informant-report scores for the total score (rs = 0.71) and subscales (rs= 0.69-0.72). Convergent validity was found for both self and informant versions of the RBQ-3, which significantly correlated with DISCO-Abbreviated RRB domain scores (rs = 0.45-0.54). Moreover, the RBQ-3 scores showed significantly weaker association with DISCO -Abbreviated scores for the Social Communication domain, demonstrating divergent validity. Importantly, these patterns of validity were found even when clinicians were blind to RBQ-3 items. In Study 2, for both autistic and non-autistic groups, internal consistency was found for the total score (α = 0.82-0.89, ω = 0.81-0.81) and for subscales (α = 0.68-0.85, ω = 0.69-0.85). A group difference was found between groups.LimitationsDue to the characteristics and scope of the specialist autism diagnostic service, further testing is needed to include representative samples of age (including children) and intellectual ability, and those with a non-autistic diagnostic outcome.ConclusionsThe RBQ-3 is a questionnaire of RRBs that can be used across the lifespan. The current study tested its psychometric properties with autistic adults without intellectual disability and supported its utility for both clinical diagnostic and research settings.

Prader-Willi syndrome: guidance for children and transition into adulthood.

Prader-Willi syndrome (PWS) is a rare orphan disease and complex genetic neurodevelopmental disorder, with a birth incidence of approximately 1 in 10,000-30,000. Management of people with PWS requires a multi-disciplinary approach, ideally through a multi-disciplinary team (MDT) clinic with community support. Hypotonia, poor feeding and faltering growth are characteristic features in the neonatal period, followed by hyperphagia and risk of rapid weight gain later in childhood. Children and adolescents (CA) with PWS usually display developmental delay and mild learning disability and can develop endocrinopathies, scoliosis, respiratory difficulties (both central and obstructive sleep apnoea), challenging behaviours, skin picking, and mental health issues, especially into adulthood. This consensus statement is intended to be a reference document for clinicians managing children and adolescents (up to 18 years of age) with PWS. It considers the bio-psycho-social domains of diagnosis, clinical assessment, and management in the paediatric setting as well as during and after transition to adult services. The guidance has been developed from information gathered from peer-reviewed scientific reports and from the expertise of a range of experienced clinicians in the United Kingdom and Ireland involved in the care of patients with PWS.

Effectiveness of integrated care for older adults-based interventions on depressive symptoms: A systematic review and meta-analysis.

To pool existing studies to assess the overall effectiveness of integrated care for older adults (ICOPE)-based interventions in improving depressive symptoms in older adults. A systematic review and meta-analysis. Ten databases were systematically searched from inception to 15 July 2023 and the search was last updated on 2 September 2023. Standardized mean difference (SMD) was calculated using random effects models. RoB 2 and GRADEpro GDT were used to assess the methodological quality and confidence in the cumulative evidence. Funnel plots, egger's test and begg's test were used to analyse publication bias. Sensitivity, subgroup and meta-regression analyses were performed to explore potential sources of heterogeneity. The results of 18 studies showed ICOPE-based interventions had a significant effect on improving depressive symptoms (SMD = -.84; 95% CI, -1.20 to -.3647; p < .001; 18 RCTs, 5010 participants; very low-quality evidence). Subgroup analysis showed the intervention group was characterized by mean age (70-80 years old), intervention duration between 6 to 12 months, gender (female <50%), non-frail older adults, depressed older adults and mixed integration appeared to be more effective. Sensitivity analysis found the results to be robust. ICOPE-based interventions may be a potentially effective alternative approach to reduce depressive symptoms in the older adults. Healthcare professionals are expected to use ICOPE as one of the interventions for depressive symptoms in older adults, and this ICOPE could provide more comprehensive care services for older adults to reduce depressive symptoms. ICOPE-based interventions may be a potentially effective alternative approach to reduce depressive symptoms in the older adults. ICOPE-based interventions had a significant effect on reducing depressive symptoms in the older adults. The intervention group characterized by mean age of older adults, intervention duration, gender ratio, health condition and integration types may influence the effect size. According to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. No Patient or Public Contribution.

Impact of pharmacist‐led discharge medication reconciliation on error and patient harm prevention at a large academic medical center

AbstractIntroductionMedication errors during hospital discharge can lead to adverse outcomes, medication‐related readmissions, and increased health care costs. Pharmacist‐led medication reconciliation at discharge is a potential solution to mitigate poor outcomes and optimize medication safety.ObjectivesThis study aimed to quantify medication errors identified at discharge and characterize the severity of patient harm prevented following pharmacist‐led discharge medication reconciliation. Cost avoidance analysis was conducted to determine its associated financial impact.MethodsPatients, who were discharged from an adult internal medicine service during October 2022, were included in this one‐month pilot prospective quality improvement study. The number of errors at discharge were documented, categorized by type, and adjudicated for severity of potential harm. Error severity was classified based on a modified National Coordinating Council for Medication Error Reporting and Prevention Medication Error Index. Cost avoidance was calculated based on whether each error would have resulted in additional medical encounters and length of stay.ResultsThirty‐one patients were included in the analysis. Forty errors were identified by pharmacist‐led medication reconciliation at discharge, with a mean of 1.3 ± 1.9 errors per patient and 68% of patients having at least one error. The most common errors were duplication of therapy (25%) and medication access barriers at discharge (25%). The severity of errors included low (22.5%), serious (75%), and life‐threatening harm (2.5%). Thirty‐five percent of errors could have led to emergency visits or hospital readmissions. The estimated total cost for errors was $25 600. Pharmacist labor cost for reconciliation was $816. Cost avoidance was $24 784 from the 14 errors at discharge that could have resulted in additional emergency or inpatient visits.ConclusionPharmacist‐led medication reconciliation at discharge may prevent harm from reaching patients, decrease cost from unnecessary health encounters, and stop the error from continuing across transitions of care.

Access, Readiness and Willingness to Engage in Allied Health Telerehabilitation Services for Adults: Does Cultural and Linguistic Diversity Make a Difference?

Telerehabilitation is an appealing service delivery option for optimising recovery. Internationally, the equity of telerehabilitation services for people from culturally and linguistically diverse (CALD) backgrounds has been questioned. Using a 31-item survey, our study explored the access, readiness and willingness of 260 patients receiving allied health services from a large tertiary health service located in Sydney, Australia, to use telerehabilitation for adults. Overall, 72% patients reported having access to technology, 38% met our readiness criteria and 53% reported willingness to engage in telerehabilitation. There were no differences in access, readiness and willingness to engage in telerehabilitation between patients from CALD and non-CALD backgrounds. Age was the only factor that influenced access (OR = 0.94, 95% CI 0.90 to 0.97), readiness (OR = 0.95, 95% CI 0.92 to 0.98) and willingness (OR = 0.97, 95% CI 0.95 to 1.00) to engage in telerehabilitation. Past experience of telerehabilitation was related to willingness (OR = 2.73, 95% CI 1.55-4.79) but not access (OR = 1.79, 95% CI 0.87 to 3.68) or readiness (OR = 1.90, 95% CI 0.93 to 3.87). Our findings highlight the importance of ensuring positive patient experiences to promote ongoing willingness to use telerehabilitation. Efforts are needed to improve patients' digital health literacy, especially patients from older age groups, to ensure equitable engagement in telerehabilitation services.

Developing a model for providing feedback to reporters of elder abuse

ABSTRACT Lack of feedback about reports made to Adult Protective Services (APS) is an important barrier to elder mistreatment reporting. To better understand barriers and facilitators to APS-reporter communication, we conducted an environmental scan of state policies and practices. We gathered publicly available information from 52 states and territories on APS administrative structure, reporting, intake, investigation, and feedback processes; performed a secondary analysis of focus groups with Emergency Medical Services providers and APS staff; and interviewed 44 APS leaders in 24 states/territories. Results revealed variation in information-sharing with reporters. Qualitative analyses revealed three overarching themes related to whether, when, and how information is shared. Results were used to develop a model illustrating factors influencing APS decisions on sharing information. This model incorporates the type of reporter (professional or nonprofessional), their relationship with the APS client (brief or ongoing), and the potential risks and benefits of sharing information with the reporter.

The Transitioning From Pediatric to Adult Inflammatory Bowel Disease Services: A Qualitative Study of Adolescents and Their Parents.

Inflammatory bowel disease (IBD) often has its onset during late childhood and adolescence, a time of significant change. Young people may be required to transition from a pediatric to an adult IBD service during this time. The transition from pediatric to adult services can be a high-risk period for poor outcomes for emerging adults with IBD. We seek to understand the concerns of patients and carers during this period. Semi-structured interview and interpretative phenomenological analysis were used to explore the experiences of 16 young persons and 10 of their parents during transition. The narrative analysis reflected the importance of three aspects of transition to the young people and their parents during transition. The process of adjusting to illness, parents letting go, and the young person "growing up" were key themes. In addition to patient needs, parental grief and adjustment may be easily overlooked in the transition period: children who only recently needed intensive parental care and involvement may now be seeking higher degrees of autonomy. These findings indicate a role for including psychological interventions addressing the well-being of parents in transition programs.

The Impact of Specialist Care on Teenage and Young Adult Patient-Reported Outcomes in England: A BRIGHTLIGHT Study.

Purpose: In England, health care policy promotes specialized age-appropriate cancer services for teenagers and young adults (TYA), for those aged 13-24 years at diagnosis. Specialist Principal Treatment Centers (PTCs) provide enhanced age-specific care for TYA, although many still receive all or some of their care in adult or children's cancer services. Our aim was to determine the patient-reported outcomes associated with TYA-PTC based care. Methods: We conducted a multicenter cohort study, recruiting 1114 TYA aged 13-24 years at diagnosis. Data collection involved a bespoke survey at 6,12,18, 24, and 36 months after diagnosis. Confounder adjusted analyses of perceived social support, illness perception, anxiety and depression, and health status, compared patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care. Results: Eight hundred and thirty completed the first survey. There was no difference in perceived social support, anxiety, or depression between the three categories of care. Significantly higher illness perception was observed in the ALL-TYA-PTC and SOME-TYA-PTC group compared to the NO-TYA-PTC group, (adjusted difference in mean (ADM) score on Brief Illness Perception scale 2.28 (95% confidence intervals [CI] 0.48-4.09) and 2.93 [1.27-4.59], respectively, p = 0.002). Similarly, health status was significantly better in the NO-TYA-PTC (ALL-TYA-PTC: ADM -0.011 [95%CI -0.046 to 0.024] and SOME-TYA-PTC: -0.054 [-0.086 to -0.023]; p = 0.006). Conclusion: The reason for the difference in perceived health status is unclear. TYA who accessed a TYA-PTC (all or some care) had higher perceived illness. This may reflect greater education and promotion of self-care by health care professionals in TYA units.