Respective Caregivers Research Articles

Factors Driving Patient Preferences for Growth Hormone Treatment in Japanese Children With Growth Hormone Deficiency

Background: There are no any clear evidence to date has evaluating patients and caregiver preferences for r-hGH (recombinant-human growth hormone) injection in children in Japan. This study quantitatively evaluated the factors driving preferences for daily r-hGH injection among Japanese children with Growth Hormone Deficiency (GHD) or their respective caregivers to determine the relative importance of treatment delivery attributes. This study was performed amongst Japanese children with GHD or their caregivers who visited a specialized clinic in Japan as part of their routine care between June and July 2020. Methods: The participants were asked to complete a web-based discrete choice experiment (DCE) questionnaire using a handheld tablet device during a routine clinical visit. DCE is a quantitative method widely used in healthcare to elicit preferences from participants in the absence of revealed preference data. Choice-based conjoint analysis was used to evaluate the relative importance of attributes as choice predictors and determine utilities for each attribute. Of the 47 respondents who participated in this study, 41 were caregivers who responded on behalf of the patients, and the remaining 6 were patients who completed the DCE themselves. All participants were screened by a clinician to ensure they met all eligibility criteria. Results: The injection schedule was found to be the most important attribute for both patients and caregivers (Relative importance: 43.6%); a once-weekly injection schedule was preferred over a daily injection schedule. For maintenance of injection devices, patients had a stronger preference for reusable pens which can be used by replacing cartridges, while caregivers preferred disposable pen devices. The storage and preparation attribute was deemed more important to patients than it was to caregivers, with patients preferring storage in room temperature even if it needed an additional mixing(reconstitution) step. Both patients and caregivers showed a clear preference for devices that offered a dose setting memory. Conclusion: The results of this study showed that patients prefer a once-weekly injection schedule over a daily injection schedule. A less frequent injection schedule should enhance adherence and compliance to r-hGH treatment over the long term and will also improve QoL in children with GHD. The benefits of a less frequent injection schedule can be further explored using real-world studies.

Missed Opportunity for Vaccination among Children Under-five years of age: A Cross-Sectional Study at Mwananyamala Regional Hospital, Dar es Salaam, Tanzania

Background Immunization is among the most important public health interventions against common childhood diseases. However, a missed opportunity for vaccination (MOV), may hamper the progress made in reducing childhood illness through vaccination. Knowing the magnitude and contributing factors for MOV, is essential for planning and executing preventive measures; however, these factors are not well elucidated in the Tanzania context. Broad Objective To determine the magnitude and factors for MOV among children under five-years old admitted at Mwananyamala hospital. Methodology We conducted a hospital-based, cross-sectional descriptive study among children under-five year old who were admitted at Mwananyamala hospital and their respective care givers from October to November 2018. An interview-guided questionnaire was used to collect data from the caregivers. The childhood immunization history was obtained from the immunization cards. Data were analyzed using Statistical Package for Social Sciences (SPSS version 20). Results A total of 209 caretakers and their respective children were enrolled in the study. Thirty-eight (18.2%) had MOV, and among the missed vaccines, the second dose of measles and rubella was the most missed vaccine (45.5%). Identified factors for MOV were unavailability of the vaccine on the day of vaccination 12 (31.3%), the child being sick on the day of vaccination 10(26.3%), due date forgotten 8 (20.8%), not informed on when to return for vaccination 7(18.1%), and no money for transport to vaccination center 1 (2.7%). Conclusion and recommendation The magnitude of missed opportunity for vaccination is still high among hospital admitted children. Vaccine procurement and distribution as well as improved communication among caretakers and health personnel should be more strengthened to reduce the number of children who are missing vaccines. Keywords: Missed opportunity for vaccination, Children, Under-five, Dar es Salaam.

Social Environmental Impact on Adolescent Attachment and Peer Relational Competence

This study aimed at investigating the differences in attachment levels to the caregiver and the differences in interpersonal relational competence between adolescents raised in the home environment and those raised in orphanages. It was hypothesized that adolescents raised in orphanages would be less attached to their caregivers than adolescents raised in the home environment with regard to trust, communication and alienation. It was also hypothesized that adolescents raised in orphanages would have a lower interpersonal relational competence in comparison to adolescents raised in the home environment. Both the adolescents raised in the home environment and the orphanage-raised adolescents were from Lusaka, Zambia. Stratified sampling technique was used to obtain the sample of 97 adolescents, 48 raised in orphanages and 49 raised in the home environment, between the ages 11 and 14 (M=12.27, S.D= 0.94). The Inventory of Parent Peer Attachment (IPPA) was administered to all participants. Significant differences were found between adolescents raised in orphanages and adolescents raised in the home environment with regard to their attachment to their respective caregivers. There were significant differences in trust in their caregivers between the two groups t (97) -3.6, p= 0.05. As hypothesized, there were significant differences in interpersonal relational competence between adolescents raised in orphanages and adolescents raised in the home environment. Finally, a strong positive correlation between attachment to the caregiver and peer relational competence was found between alienation from the caregiver and alienation from peers r (72) .606, p< .01.Attachment bonds between adolescents and caregivers take place regardless of the rearing environment and peers can buffer the effects of harsh rearing environments. More research is needed to better understand the attachment in children under institutional care to stave off negative effects of institutional care in Zambia.

94 Agreement Between Proxy- and Self-Report PROMIS Scores in Pediatric Burn Survivors

Abstract Introduction Reporting by proxy is necessary when patients are not able to report their own experience, such as young children or those too sick to respond. PROMIS pediatric proxy-report item banks are a set of generic measures that facilitate comparisons across populations and studies. Our objectives were to (1) examine agreement in pediatric burn survivors between child self- and caregiver proxy-report on multiple PROMIS domains and (2) examine factors associated with differences between self- and proxy-reports. Methods Data were collected from children 8–17 years with moderate to severe burn injury and their respective caregivers between 6 months and 15 years after injury. The PROMIS-25 and Anger v1.0 short form were completed by pediatric burn participants. Caregivers completed either custom (depression, pain interference) or standard (Physical Function (PF) 8a, Peer 7a, Anger 5a) PROMIS proxy short forms. Self- and proxy-report scores were compared using Wilcoxon sign rank test, Cohen’s effect size, and intraclass correlation coefficients (ICC(2,1)) and by agreement across severity of symptoms based on recommended cutoffs. Regression analyses examined child- (self-report score, age, gender, and ethnicity) and proxy-related (relationship to child) factors associated with score differences. Results A total of 274 child-caregiver pairs completed the PROMIS measures. Mean child age was 13.0 (SD:3) years. Caregivers reported significantly worse scores than the child on PF, pain, and anger (all p≤0.01). Cohen’s d ranged from 0.05 (depression) to 0.25 (PF), with all domains except PF in the small effect size range (< 0.2). Similarly, ICCs were all of moderate agreement and ranged from 0.51 (pain) to 0.69 (depression). The percentage of dyads in agreement by severity groups was high with only 5% (pain), 8% (PF, peer relationships), and 9% (depression, anger) of pairs discordant. Regression models indicated only higher self-report score was associated (all p< 0.05) with greater differences across all domains, though female gender was also associated with greater differences on depression only. Conclusions This study provides support for the use of pediatric proxy PROMIS depression, PF, peer relationships, pain interference, and anger scales in pediatric burn patients. Although agreement was moderate to good, proxy report should only be considered when self-report is not possible or practical. Caregivers typically report slightly worse severity of symptoms than children across all domains.

“It is kind of like a responsibility thing”: transitional challenges in asthma medication adherence among adolescents and young adults

Objective Nonadherence to asthma medications is prevalent among adolescents and young adults (AYAs) with asthma, leading to worsened control of asthma symptoms and more frequent exacerbations. AYAs have unique developmental transitional challenges that may alter medication adherence. We aimed to use a socio-ecological framework to explore the effect of transitional challenges from adolescence to young adulthood on asthma controller medication adherence and to identify possible strategies to promote medication adherence. Methods We conducted qualitative semi-structured interviews by phone with 7 adolescents (14 to 17 years), their respective caregivers, and 7 young adults (18 to 30 years). Participants were recruited from a respiratory clinical trial network and pulmonary clinics in 4 states at 6 different sites through convenience sampling. Interviews were audio recorded, transcribed and coded using thematic analyses. Results Participants identified personal challenges affecting adherence to asthma medications during the transition from adolescence to young adulthood including responsibility for asthma self-management, understanding of asthma condition and severity, embarrassment, and life demands. Health systems factors including medication cost, challenges with insurance, difficulties obtaining refills, and difficulty with access to medications at school also impacted asthma medication adherence. Participants recommended adherence strategies including improved access to inhalers, incorporating asthma medications into daily routines, and using reminders. Conclusions Focusing on the transitional challenges of AYAs during the time period from adolescence to young adulthood is necessary for supporting their asthma medication adherence and creating future interventions. Socio-ecological and systems factors should also be targeted for improved asthma medication adherence. Supplemental data for this article can be accessed online at https://doi.org/10.1080/02770903.2021.1897836.

Caregiver overload and factors associated with care provided to patients under palliative care.

Objective.To identify overload and associated factors among caregivers of adult patients receiving palliative care.Methods.Descriptive, quantitative, and cross-sectional study addressing 40 adults under palliative care and their respective caregivers enrolled in the Home Care System in Ribeirão Preto, Brazil. Data concerning the patients included demographic profile and Mini-Mental State Examination. A form was used to collect the caregivers’ demographic data along with the Zarit Burden Interview Scale, Self-Reporting Questionnaire, Beck Depression Inventory, and Coping Strategies Inventory.Results.Regarding the patients, 84.2% were women, 52.6% were over 80, 65.8% had no partner, and 76.3% presented cognitive impairment. The caregivers were mostly women (84.5%), aged 56.67 years old on average, were the patients’ children (42.5%); had no partner (55%), and lived with the patient (77.5%). The mean score obtained in the burden scale was 28.78 points, 32.5% had stress, and 42.5% depression. Regarding coping strategies, the ones most frequently used were positive reappraisal (12.8), withdrawal (10.2), and problem solution (9.7). A positive and statistically significant correlation was found between time spent with care (days and hours) and escape/avoidance with overload. Linear regression analysis revealed an association between being a woman (p=0.002), number of days spent with care (p=0.004), and depression (p<0.001) with overload.Conclusion.Being a woman, spending more days providing care, and depressive symptoms were associated with caregiver overload.

Factors associated with social support for family members who care for stroke survivors.

IntroductionVascular strokes are a primary cause of long-term disability for adults, with many social consequences for the patient, the family and healthcare systems worldwide.AimTo investigate the relation between patients' and caregivers' characteristics, as well as burden and depression, and the social support received by carers for stroke victims in Greece.MethodPatients and caregivers were recruited from community settings in the Attica region of Greece, using purposive sampling. They completed a set of questionnaires during face-to-face interviews. Correlational and multiple regression analyses were performed to identify factors associated with caregivers' perceptions of social support.ResultsIn total, 109 dyads of patients and their respective caregivers were recruited. The patients' mean age was 69.3 years, while caregivers' mean age was 58.0 years; 51.4% of patients were males, whereas 67.9% of the caregivers were females. The majority of both patients and caregivers were married, with an annual family income less than €10,000. The level of perceived social support was significantly associated with patients' or caregivers' annual family income, caregivers' working status and the daily caring hours (p < 0.01). Greater perceived support was significantly associated with a lower care burden BCOS (r = 0.29, p < 0.01) and female gender (p = 0.023), but not with the patient's functional level nor with depression (p > 0.05).

Domains of Awareness in Young and Late Onset Dementia

Background: There is a lack of research investigating whether there are differences in the domains of awareness according to the age at onset of dementia. Objective: This study is designed to investigate differences in awareness of cognitive functioning and health condition, functional activity impairments, emotional state, and social functioning and relationships among people with young onset (YOD) and late onset dementia (LOD); and examine associations between awareness and its domains with cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and quality of life (QoL) in both groups. Methods: A group of 136 people with dementia and their respective caregivers (YOD = 50 and LOD = 86) were consecutively selected. We assessed awareness of disease, dementia severity, cognition, functionality, neuropsychiatric symptoms, social and emotional functioning, and QoL. Results: People with YOD had more neuropsychiatric symptoms than people with LOD. People with YOD were more aware of disease (total score), of their cognitive functioning and health condition and of their functional activity impairments, even if this group was more severely cognitive impaired and had a worse level of functionality than LOD group. Multivariate linear regressions showed that functionality has a wide relationship to awareness for people with YOD. While neuropsychiatric symptoms and QoL has a greater relation to awareness for people with LOD. Conclusion: Different clinical variables are associated to different domains in YOD and LOD groups, reinforcing the heterogeneity of awareness in dementia.

Not All Home Care is Created Equal: The Relationship Between Sources of Care and Recipients’ Perceived Control

Perceived control is an important psychological resource for middle-aged and older adults. Aging in place may help foster feelings of control and autonomy, yet many community-dwelling older adults must rely on others for physical assistance. Little is known about psychological reactions to receiving this support. This study investigated how receiving home care from different sources was associated with two facets of perceived control (mastery and perceived constraints) among adults with varying levels of physical disability. Data was drawn from the 2012 and 2014 waves of the Health and Retirement Study. Community-dwelling adults aged 50 years and older receiving help for at least one activity of daily living (ADL) impairment (N = 884) reported their relationship to each respective caregiver (formal professional and/or informal family or friend), level of ADL impairment, and ratings of perceived control. Ordinary least squares (OLS) regression was used to examine the association between type of support and perceived control and the moderating effect of physical disability on that relationship. Receiving formal or a combination of formal and informal support was related to perceptions of greater control over one’s life, but only in terms of mastery. The level of one’s ADL impairment did not have a moderating effect on the relationship between support type and perceived control. Findings suggested that the type of instrumental support adults receive in their home has implications for specific facets of perceived control. Those receiving formal or mixed support had perceptions of greater mastery than those only receiving informal support.

Association Between Awareness of Informal Caregivers and Falls in Elderly Patients with Uncontrolled Diabetes Mellitus

Background: Elderly people with uncontrolled diabetes mellitus (DM) are at risk of falls, which can lead to injury and disability. Not much is known of informal caregivers’ awareness of falls in elderly patients with DM. Objective: This study aims to identify an association between caregiver’s awareness and falls in elderly patients with DM. Methods: A total of 136 pairs of DM patients and their respective family caregivers were recruited from a clinical service center at Chiang Mai University, Thailand. The questionnaire regarding the caregiver’s awareness of the risk of falls in elderly patients was given via a face-to-face interview. Each elderly patient was asked about their history of falls in the prior year, and the risk of falls was assessed by Time Up &amp; Go (TUG) test. Logistic regression analysis was performed to determine association. Results: The mean age of the DM patients was 65.7 years. Sixty-two patients (45.6%) had fallen at least once in the prior year. The mean TUG test result was 12.67±1.83 second. Most caregivers demonstrated a high level of awareness regarding the risk of falls in elderly patients. The results of the multivariable analysis showed that three variables – balance problems, risk of falls assessed by TUG test, and scores of caregiver’s awareness of risk of falls – were significantly related to falls in the previous year among elderly patients with DM (p-value&lt;0.05). Conclusion: The caregivers’ awareness of fall risk may influence fall occurrence among older adults with DM. An intervention program to improve awareness among informal caregivers should be considered for fall prevention in elderly people.

Abstract 17114: Whose Work is It? Patient Perspectives on Challenges in Heart Failure Self-Management

Introduction: The importance of self-care behaviors in successful heart failure (HF) management is widely recognized. And yet, patient perspectives on strategies to effective carry out the work of behavior change remain relatively unexplored. Methods: From March 2017 to May 2017, we conducted semi-structured, in-depth interviews with 8 HF patients involved in the CONNECT-HF clinical trial and 7 of their respective caregivers. Interviews were audio-recorded and transcriptions were imported to NVivo 11 (Version 11.4.0) for coding and analysis. We used content analysis and a mixed inductive and deductive approach for interpretation of coded text. Results: Patients (n=8) and caregivers (n=7) reported numerous strategies (n=28) for each guideline-based self-care behavior. The over-arching theme contributing to successful, effective behavior change was the value of social support and social interactions in the work of “sticking with it.” Predominant sub-themes included the idea that “knowledge is necessary but not sufficient” for behavior change, and “ building a routine” was critical for life-long self-care to be effective (Table 1). Conclusions: Many of the behavior change barriers and strategies proposed by patients are concepts that are consistent with findings in the field of behavioral economics and have the potential to inform development of effective behavior change tools.

322P Challenged faced by cancer patients during the COVID-19 pandemic

The COVID-19 pandemic has affected more than ten million people worldwide with nearly four lakh deaths. Cancer patients requiring continuum of care are facing difficulty accessing healthcare. Due to the risk of infection with COVID-19, their treatments have been rescheduled, elective procedures postponed, intravenous chemotherapies transitioned to oral medications, where possible, maintenance therapies deferred, and supportive care administered at home. Hence, we conducted a survey from the hospital patient registry to provide critical, up-to-date information about the impact of COVID-19 on cancer patients. Patients taking treatment in the Department of Medical Oncology and Haematology at the American Oncology Institute, Hyderabad were given an online questionnaire upon consent. Details included age, cancer type, disease stage, treatment phase, delay in hospital appointment, procuring essential drugs including pain medicine, investigations, average time delay, impact on mental health, interpersonal relationships, deferring treatment due to fear of infection amongst other questions. Survey is also available in the local language besides English. A total of 200 patients participated in the survey with majority in the age group of 26-75 years (95.5%), 60% being female and the commonest cancers being breast (22%) and lung (16.5%) respectively. Patients receiving chemotherapy and immunotherapy were 58% and 3.9% with most being stage 3 (29%) and 4 (48.5%). Treatment delays were faced by 32% for various reasons while mental health impact in 67% patients. Majority of the patients expressed being at higher risk from COVID-19, with 35.8% agreeing upon continuation of chemotherapy and 66% preferring transition from injectable to oral medication. Forty five percent were aware of COVID-19 prophylaxis, while 85% discussed continuation or deferring treatment with their respective care giver. This survey was a cooperative effort across many physicians, nurses and patients to provide critical, up-to-date information about the impact of the COVID-19 pandemic on cancer patients. Completing this short 10-minute survey or questionnaire will help health care to identify COVID-19 related issues in the community.

Familia como factor protector para la conservación de la capacidad funcional en adultos mayores

Objetivo: Establecer la relación de los determinantes que intervienen en el cuidado familiar para la conservación de la capacidad funcional de la población adulta mayor. Metodología: Se realizó un estudio con enfoque cualitativo, observacional, de corte transversal. La muestra de la investigación estuvo conformada por diadas de adulto mayor con su respectivo cuidador. Resultados: Como aporte del estudio se obtiene que el cuidador asume de manera responsable su rol, con la aplicación de conocimiento y habilidades empíricas para proteger a la persona que permanece a su cuidado con la finalidad de asegurar la realización de actividades de la vida diaria con escasa o si ayuda de una manera independiente. Conclusión: La implementación de estrategias en base a actividades de prevención y promoción por parte del equipo de salud de la Parroquia será fundamental al momento de establecer a la familia como factor protector.

Bouncing Back from the Burden of Dementia

Abstract. Background: Although there is mounting evidence of dyadic interdependencies between patients with dementia (PWD) and their caregivers, predictors of resilience among PWD and their caregivers are generally regarded in isolation. We therefore investigated how dyadic interdependencies regarding common resilience factors predict subjective notions of individual resilience. Methods: A total of 29 dyads (caregivers: 23 female, 73 ± 7 years; PWD: 6 female, 76 ± 6 years, Mini-Mental State Examination (MMSE) score: 18 ± 6) drawn from two studies answered questions about resilience (Brief Resilience Scale; BRS), partnership quality (Marital Quality Questionnaire; PFB), and depression (Geriatric Depression Scale; GDS-15). Using linear regression models, we predicted BRS scores by linearly combining individual characteristics (intraindividual level), characteristics of the partner (interindividual level), and their dyadic similarity (dyadic level). Results: Intraindividually, higher resilience in caregivers was associated with female sex; interindividually, it was associated with lower MMSE scores and higher PFB scores in PWD. On a dyadic level, the more different the GDS-15 scores were, the higher the resilience of caregivers. For PWD, higher resilience was significantly related to individual lower GDS-15 scores and higher PFB scores, while the characteristics of caregivers did not explain any variance. However, similarity in GDS-15 scores predicted higher resilience in PWD. Discussion: Resilience is affected differently in PWD and caregivers, potentially pointing to different strategies in coping with disease-related changes. Future studies are necessary to examine the mechanisms underlying resilience in PWD and their respective caregiver in order to tailor interventions that address the needs of both parties, from the individual, interindividual, and dyadic perspectives.

Adherence to Anti-Tuberculosis Treatment Among Pediatric Patients at Nekemte Specialized Hospital, Western Ethiopia.

BackgroundNon-adherence to tuberculosis treatment is the most challenging and hindering factor for successful tuberculosis therapy. The long duration of tuberculosis treatment and the undesirable effects of anti-tuberculosis drugs result in non-adherence to treatment among pediatric patients. Hence, this study was aimed to evaluate pediatrics adherence status among tuberculosis pediatric patients on anti-tuberculosis treatment at Nekemte Specialized Hospital.MethodsA health facility-based cross-sectional study design was used to recruit pediatric TB patients who were receiving their treatment between February 15 and March 15, 2019. Adherence to tuberculosis therapy was evaluated using data obtained from face-to-face interviews of their respective caregivers. The collected data were entered into EPI-manager 4.0.2 software and analyzed using SPSS version 24. Logistic regression was used to analyze the variables and variables with p-value <0.05 had a statistically significant association with the adherence to anti TB treatment.ResultsAmong 202 participants involved in the study, 120 (59.4%) of them were males and 119 (58.9%) were in the age category of 11–15 years. A total of 166 (82.2%) of the patients had extra-pulmonary tuberculosis and 174 (86.1%) of them were in the intensive phase. Of the pediatric tuberculosis patients, 48 (73.3%) of them have adhered to the treatment regimen. Female gender [AOR: 3.3, 95% CI: 1.52–7.2], younger age (0–5 years) [AOR: 5.96 95% CI: 1.81–19.6], living in urban area [AOR: 3.73, 95% CI: 1.67–8.36], and patients who did not experience side effect [AOR: 2.87, 95% CI: 1.41–5.81] were predictors of good adherence to tuberculosis treatment up on multivariable logistic regression analysis.ConclusionThe level of adherence observed in our study area was low. Age, sex, residence, and side effect experience showed an association with tuberculosis treatment adherence. Therefore, health care providers should educate all patients with tuberculosis before the initiation of anti-tuberculosis treatment.

The effects of inflammatory bowel disease on caregivers: significant burden and loss of productivity

BackgroundCaregiver burden is the emotional, physical, practical, and/or financial burden associated with taking care of a patient with a chronic condition. Limited literature on caregiver burden in Inflammatory Bowel Diseases (IBD) has accounted for some predictors, but its effect on work productivity (absenteeism and presenteeism) is unknown.MethodsIn a prospective study, patients and their respective caregivers were surveyed from November 2015 until July 2017. Data on demographics, work productivity, quality of life, disease activity, caregiver burden and productivity were collected. The burden on caregivers was assessed and associations between caregiver productivity and caregiver burden were analyzed. Additionally, predictors for caregiver burden were identified.ResultsOne hundred two IBD patients and their respective caregiver were included. In total, 39% of IBD caregivers experienced burden. Caregivers with burden experienced significantly more absenteeism and presenteeism (65 and 85% respectively). Furthermore, 51% of caregivers felt that they should be doing more for their care recipient and felt they could do a better job at caregiving. Predictors of burden included race/ethnicity, history of fistulas, diagnosis of ulcerative colitis, higher caregiver education, and hours spent caregiving.ConclusionCaregivers with burden had significantly more productivity decrease compared to those without burden. Additionally, the majority of caregivers feel they should be providing more and better care for their recipients. The development of strategies to address caregiver’s distress and perceived burden when caring for IBD patients is warranted.

Who is Taking Care of Central American Immigrant Youth? Preliminary Data on Caregiving Arrangements and Emotional-Behavioral Symptoms Post-Migration.

Migrant youth are at increased risk for mental health problems. Given increases in families migrating to the U.S. and family separations at the U.S.-Mexico border, understanding migrant youth home environments and impacts of family disruption are growing concerns. This study assessed caregiver arrangements and reports of youth emotional and behavioral symptoms from recently immigrated adolescents (N = 111) and respective caregivers (n = 64). 47.7% of youth indicated living with their mother, father, or both; 24.3% another relative, 2.7% a non-relative, and 25.2% reported no caregiver. 25% indicated caretaking responsibilities of their own. Caregiving arrangements were related to emotional and behavioral symptoms. Caregiver documentation status was related to caregiver-reported conduct problems, prosocial behavior, and total symptoms. The migration process is disruptive for youth and home environments. Many youth experience disrupted caregiving post-migration and caregiver features are significant to youth emotional and behavioral symptoms-which were elevated in this sample. The study provides novel insight into effects of family disruption on migrant youth post-migration.

The role of mind theory in patients affected by neurodegenerative disorders and impact on caregiver burden

BackgroundTheory of Mind (ToM) is defined as the ability to understand mental and emotional state. This ability is assessed also in neurodegenerative disease. Few studies have investigated the impact that social cognition of patients could have on caregiver burden. The aim of this study was to investigate a possible correlation in level of social cognition impairment between patients with different neurodegenerative disorders and their caregivers with possible impact on caregivers burden. Methodswe enrolled 48 patients with dementia divided in different groups: Fronto-Temporal Dementia (FTD), Alzheimer Disease (AD), and Mild Cognitive Impairment (MCI) and also the three groups of their respective caregivers. All subjects were submitted to ToM tests, and the caregiver groups also to Caregiver Burden Inventory (CBI) to evaluate level of burden. ResultsOur results showed that ToM was more impaired in FTD patients and in their caregivers In addition, FTD group showed more impaired performances in tasks related to emotional skills. ConclusionsWe suggested that ToM impairment of patients are related to ToM impairment of caregivers with differences of scores in caregiver groups. The caregiver difficulties to understand, attribute and describe emotional and mental states of their relatives develop distress and inability in burden management and disorders relative to neurodegenerative disease.

PND86 THE BURDEN OF INCREMENTAL “OFF” HOURS ON CAREGIVERS OF PATIENTS WITH PARKINSON’S DISEASE: A NEUROLOGIST⁄PATIENT⁄CAREGIVER REAL-WORLD ASSESSMENT IN THE US

Patients with Parkinson’s disease (PD) treated with levodopa often develop “OFF” episodes, which are characterized by the reappearance or worsening of motor and/or non-motor symptoms. “OFF” episodes may lead to a patient’s loss of independence in basic day-to-day functioning and the need for increased caregiver aid. This study aimed to understand the association between “OFF” hours and caregiver burden. We analyzed data collected between 2017-2019 from the Adelphi Parkinson’s Disease Specific Programme, a cross-sectional, observational US study of neurologists, their consulting patients with PD, and the patients’ caregivers. “OFF” hours were physician-reported, and caregiver burden was self-reported using the 22-item Zarit Burden Interview (ZBI; range score, 0-88). Eligible patients were those who were prescribed levodopa at the time of data capture, and whose respective caregivers had voluntarily completed a caregiver self-completion form. Multiple linear regression analysis was used to determine the association between the number of daily “OFF” hours (compared continuously from zero upwards) and caregiver burden. Regressions were adjusted for patient age, sex, body mass index, comorbidities, and current disease severity as determined by the Hoehn and Yahr scale. Data were available for 235 patients who had a physician-completed patient record form and corresponding caregiver self-completion form. Patients experienced a mean (standard deviation) daily “OFF” time of 1.67 (1.85) hours. Increased daily “OFF” hours were significantly associated with increased caregiver burden for the overall ZBI score (+1.62; P=0.001) and several of its domains: personal strain (+0.91; P=0.003), role strain (+0.98; P<0.001), relationship burden (+0.42; P=0.003), emotional well-being (+0.53; P=0.001), finances (+0.13; P=0.002), and loss of control over one’s life (+0.27; P=0.014). Increased “OFF” hours among patients with PD were associated with an increased degree of burden for their caregivers, as measured by the ZBI, highlighting the importance of optimal clinical management of “OFF” episodes.

Assessing ICD-11 Gaming Disorder in Adolescent Gamers: Development and Validation of the Gaming Disorder Scale for Adolescents (GADIS-A).

Background: Adolescents affected by Gaming Disorder (GD) show substantial impairments in daily functioning. GD was included in the 11th revision of the International Classification of Diseases (ICD-11) as a new diagnosis coming into effect in January 2022. An instrument to screen for GD in adolescents has not yet been published and is urgently needed for scientific research and clinical practice. Methods: In the present study, the ICD-11-based Gaming Disorder Scale for Adolescents (GADIS-A) was developed by clinical experts and scientists. It was validated with 819 frequent gamers of 10 to 17 years and a respective caregiver in an online survey. Criterion validity was examined by assessing gaming behavior, emotional dysregulation, and academic performance. Item structure was investigated by factorial analyses. ROC- and Latent Profile Analyses were computed for differentiation between GD and Non-GD. Results: In line with the ICD-11 approach and accounting for cognitive-behavioral symptoms and negative consequences equally, GADIS-A items were best described by two factors. The new instrument showed excellent internal consistency, good criterion validity, and excellent discriminatory power. Conclusions: GADIS-A is the first successfully validated questionnaire to assess ICD-11 GD in adolescents. Thus, it can significantly contribute to reliably identify affected adolescents in clinical and research settings.