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1.
medRxiv ; 2024 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-39148853

RESUMO

Background: The emergency personnel who responded to the World Trade Center (WTC) attacks endured severe occupational exposures, yet the prevalence of cognitive impairment remains unknown among WTC-exposed-FDNY-responders. The present study screened for mild and severe cognitive impairment in WTC-exposed FDNY responders using objective tests, compared prevalence rates to a cohort of non-FDNY WTC-exposed responders, and descriptively to meta-analytic estimates of MCI from global, community, and clinical populations. Methods: A sample of WTC-exposed-FDNY responders (n = 343) was recruited to complete an extensive battery of cognitive, psychological, and physical tests. The prevalences of domain-specific impairments were estimated based on the results of norm-referenced tests, and the Montreal Cognitive Assessment (MoCA), Jak/Bondi criteria, Petersen criteria, and the National Institute on Aging and Alzheimer's Association (NIA-AA) criteria were used to diagnose MCI. NIA-AA criteria were also used to diagnose severe cognitive impairment. Generalized linear models were used to compare prevalence estimates of cognitive impairment to a large sample of WTC-exposed-non-FDNY responders from the General Responder Cohort (GRC; n = 7102) who completed the MoCA during a similar time frame. Result: Among FDNY responders under 65 years, the unadjusted prevalence of MCI varied from 52.57% to 71.37% depending on the operational definition of MCI, apart from using a conservative cut-off applied to MoCA total scores (18 < MoCA < 23), which yielded a markedly lower crude prevalence (24.31%) compared to alternative criteria. The prevalence of MCI was higher among WTC-exposed-FDNY-responders, compared to WTC-exposed-non-FDNY-GRC-responders (adjusted RR = 1.53, 95% C.I. = [1.24, 1.88], p < .001) and meta-analytic estimates from different global, community, and clinical populations. Following NIA-AA diagnostic guidelines, 4.96% of WTC-exposed-FDNY-responders met the criteria for severe impairments (95% CI = [2.91% to 7.82%]), a prevalence that remained largely unchanged after excluding responders over the age of 65 years. Discussion: There is a high prevalence of mild and severe cognitive impairment among WTC-responders highlighting the putative role of occupational/environmental and disaster-related exposures in the etiology of accelerated cognitive decline.

2.
J Med Ext Real ; 1(1): 163-173, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-39091668

RESUMO

Virtual reality (VR) effectively alleviates pain for pediatric patients during many medical procedures, such as venipuncture and burn care. In our previously published randomized clinical trial among 90 pediatric burn patients, participants in the active VR group had significantly lower scores for overall pain compared with participants in the standard care control and for worst pain compared with participants in the passive VR and control group. However, whether VR differs by a patient's age or sex remains unresolved. Thus, we reanalyzed our data by comparing the active and passive VR participants to evaluate how age and sex affect VR pain alleviation during dressing care for pediatric burns. In total, 90 patients aged 6-17 years (inclusive) with burn injuries were recruited from an outpatient burn clinic of an American Burn Association-verified pediatric burn center. Before randomization, VR helpfulness and need expectations were assessed on a visual analog scale (0-100). Participants were randomly assigned to active VR, passive VR, or control for one dressing change. Immediately following the dressing change, active and passive VR participants self-reported pain and the time spent thinking about pain and rated the VR features on the degree of realism, pleasure/fun, and perceived engagement level. Path analyses assessed how these VR features were interrelated and how they affected self-reported pain by age and sex. Patients aged 6-9 years reported higher mean expectations of VR helpfulness and need (mean = 73.6 and 94.5, respectively) than 10-12-year-olds (mean = 55.7 and 84.2, respectively) and 13-17-year-olds (mean = 68.6 and 77.4, respectively). The path analysis indicated VR engagement and fun were significantly correlated (p-value < 0.05). VR engagement significantly negatively impacted overall pain scores (coefficient = -0.45, -0.41; p-value < 0.05) and significantly positively impacted time thinking of pain (coefficient = 0.38, 0.32; p-value < 0.05). Younger patients had the highest expectations of VR helpfulness and need. VR game realism, fun, and engagement features were not statistically different between age groups and sexes. VR engagement and thinking of pain during burn dressing significantly positively affected self-reported pain (p-value < 0.05), suggesting an analgesic mechanism beyond distraction alone. Younger patients benefited more from VR than older patients.

3.
Health Expect ; 27(1): e13950, 2024 02.
Artigo em Inglês | MEDLINE | ID: mdl-39102685

RESUMO

BACKGROUND: Cognitive impairment is common in Parkinson's disease and is associated with poorer quality of life and increased caregiver distress, but little qualitative information is available on lived experiences of people with Parkinson's who also have cognitive impairment. OBJECTIVES: The aim of this study was to explore the challenges of cognitive impairment in Parkinson's, triangulating the perspectives of people with Parkinson's, caregivers and healthcare professionals. METHODS: Semistructured interviews were conducted with 11 people with Parkinson's and cognitive impairment, 10 family caregivers and 27 healthcare professionals, using purposive sampling in the United Kingdom (2019-2021). Cognitive impairment was identified by healthcare professionals and required subjective symptoms. Relevant cognitive diagnoses were recorded. Interviews were audio-recorded, transcribed and analysed using reflexive thematic analysis. RESULTS: An overarching concept of the compound impact of cognitive and physical decline was developed, with six themes. Four themes describe the experience of living with cognitive impairment in Parkinson's: (1) Challenges in Daily Activities, (2) Psychological Impact and (3) Evolving Communication Difficulties together contributing to (4) Social Shift, encompassing a reduction in wider social activities but intensification of close relationships with increased dependence. A fifth theme (5) Living Well describes positive influences on these experiences, encompassing intrinsic motivation, self-management strategies and supportive relationships. Furthermore, underlying and shaping the whole experience was the sixth theme: (6) Preconceptions about Cognitive Impairment, describing fear and denial of symptoms and poor understanding of the nature of cognitive impairment in Parkinson's, with differences to other dementia pathologies. CONCLUSIONS: Cognitive impairment superimposed on the existing challenges of Parkinson's has a multifaceted impact and makes living with the condition arduous. Increased understanding of the experiences of this group and employing the identified facilitators for living well may be able to improve patient and caregiver experiences. PATIENT OR PUBLIC CONTRIBUTION: Two people with Parkinson's and cognitive impairment and three caregivers contributed to the study. Between them they contributed throughout the entirety of the project, giving input at conceptualisation as well as advice and review of interview questions, participant information leaflets, recruitment, interpretation of findings and summaries of the project.


Assuntos
Cuidadores , Disfunção Cognitiva , Entrevistas como Assunto , Doença de Parkinson , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Doença de Parkinson/psicologia , Cuidadores/psicologia , Feminino , Masculino , Disfunção Cognitiva/psicologia , Idoso , Pessoa de Meia-Idade , Reino Unido , Atividades Cotidianas/psicologia , Pessoal de Saúde/psicologia , Idoso de 80 Anos ou mais , Adulto
4.
Front Psychiatry ; 15: 1337320, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39050920

RESUMO

Introduction: It is well established that personality traits impact cognition, as certain personality factors are associated with performance in specific cognitive domains. However, the findings on the relationships between the Big Five traits and cognition are mixed. Additionally, few studies have explored these relationships in older adults with a history of depression. The present study aimed to (a) evaluate the impact of the Big Five personality traits in older adults with and without a lifetime history of depression; and (b) test the hypotheses that higher trait neuroticism would correlate negatively with cognitive performance, while openness to experience would correlate positively with cognition. Methods: The sample consisted of 138 participants between the ages of 55 and 78 (M = 65.56, SD = 6.36). Sixty-two participants met criteria for current or remitted Major Depressive Disorder, while 76 had no history of depression or other mental health disorders. Participants underwent comprehensive neuropsychological testing. Personality was assessed using the NEO Personality Inventory-Revised (NEO-PI-R), while depression status was determined using the Structured Clinical Interview for DSM-5 (SCID-5). Following a series of Pearson correlations of cognitive variables and the five personality factors, linear regression models were estimated for each significant correlation. Demographic variables (i.e., age, education and sex) were entered in block 1, depression status (never vs. ever) was entered in block 2, and the personality factor score, or sub-facet was entered in block 3. Results: Neuroticism was not associated with cognitive performance on any outcome measure. The facets Openness to Feelings and Openness to Values were positively related to phonemic fluency. Further Openness to Values was positively related to cognitive flexibility. Discussion: Our results suggest that older people who are (a) more capable of identifying and understanding their feelings and the feelings of others, and (b) who are more willing to re-examine social, political, and religious values perform stronger on tasks measuring verbal fluency and cognitive flexibility, which are aspects of executive functioning. Interventions that aim to enhance open mindedness in older adults may have a parallel impact on improving executive functioning, though this would need to be examined prospectively.

5.
J Am Coll Health ; : 1-10, 2024 Jul 12.
Artigo em Inglês | MEDLINE | ID: mdl-38995622

RESUMO

Objective: To assess the sexual health of young community college students so that health promotion priorities can be identified and tailored programming can be implemented for this understudied population. Participants: A national sample of 1,678 community college students. Methods: Survey data was analyzed to understand trends in sexual health - including differences by gender and sexual identity. Results: While 54% of the sample have had vaginal sex and 16% have had anal sex, rates of condom use for these behaviors are low (respectively 51% and 42%). Only 52% of students have communicated with a medical professional about sexual health and 42% have been tested for STIs. Young men have the lowest odds of communicating with a medical professional about sexual health. Heterosexual men have particularly low odds of getting tested for STIs. Conclusions: Community college students need additional resources - eg, education, accessible health care - to promote their sexual health.

6.
Qual Life Res ; 33(9): 2439-2452, 2024 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-38888672

RESUMO

PURPOSE: To investigate the contributors to self-rated health in people with late-stage Parkinson's disease (PD) and cognitive impairment. METHODS: A secondary analysis of baseline data from the international Care of Late-Stage Parkinsonism (CLaSP) cohort study was conducted. Participants with PD and either dementia or mild cognitive impairment or MMSE < 24/30 in the absence of major depression were included if they had completed the EQ-5D-3L assessment (n = 277). Factors associated with self-rated health (EQ-5D-3L Index and Visual Analogue Scale) were investigated through multivariable linear regression. RESULTS: More severe PD (motor and non-motor) was associated with worse self-rated health. The EQ-5D-3L dimensions of Mobility, Self-Care and Usual Activities were almost universally affected; the latter two particularly severely. Being unable to perform usual activities or having moderate to extreme anxiety or depression were significantly associated with EQ-5D-3L Visual Analogue Scale, suggesting these are particularly valued. Worse motor impairment and function and the non-motor symptom domains of mood, perception, sexual function, and miscellaneous (e.g., pain) were associated with worse self-rated health, whereas greater burden of gastrointestinal symptoms was associated with better self-rated health in multivariate analysis. Better self-rated health was associated with recent PD nurse consultation, and higher doses of dopaminergic medication. CONCLUSION: Improvement of activities of daily living, mood and anxiety should be prioritised in clinical practice, with consideration of perception and sexual function in this population. Recent nurse consultations and higher antiparkinsonian doses are associated with better self-rated health, suggesting there is no room for a therapeutic nihilism in this population of people within a complex phase of PD.


Assuntos
Disfunção Cognitiva , Doença de Parkinson , Humanos , Doença de Parkinson/psicologia , Doença de Parkinson/complicações , Masculino , Feminino , Idoso , Disfunção Cognitiva/etiologia , Nível de Saúde , Qualidade de Vida , Idoso de 80 Anos ou mais , Atividades Cotidianas , Pessoa de Meia-Idade , Autorrelato , Estudos de Coortes , Inquéritos e Questionários , Índice de Gravidade de Doença
7.
BMJ Open ; 14(6): e081104, 2024 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-38885992

RESUMO

INTRODUCTION: The prevalence of multiple long-term conditions (M-LTCs) increases as adults age and impacts quality of life and health outcomes. To help people manage these conditions, complex behaviour change interventions are used, often based on research conducted in those with single LTCs. However, the needs of those with M-LTCs can differ due to complex health decision-making and engagement with multiple health and care teams. OBJECTIVES: The aim of this review is to identify whether current interventions are effective for people living with M-LTCs, and which outcomes are most appropriate to detect this change. METHODS: Five databases (MEDLINE, Embase, PsycINFO, CINAHL and Web of Science) were systematically searched, between January 1999 and January 2022, to identify randomised controlled trials evaluating effectiveness of behaviour change interventions in people with M-LTCs. Intervention characteristics, intervention effectiveness and outcome measures were meta-analysed and narratively synthesised. RESULTS: 53 eligible articles were included. Emotional well-being and psychological distress (depression and anxiety) outcomes were most amenable to change (emotional well-being: standardised mean difference (SMD) 0.31 (95% CI 0.04 to 0.58); depression psychological distress: SMD -0.45 (95% CI -0.73 to -0.16); anxiety psychological distress: SMD -0.14 (95% CI -0.28 to 0.00)), particularly for interventions with a collaborative care approach. Interventions targeting those with a physical and mental health condition and those with cognitive and/or behavioural activation approach saw larger reductions in psychological distress outcomes. Interventions that lasted for longer than 6 months significantly improved the widest variety of outcomes. CONCLUSION: Complex interventions can be successfully delivered to those with M-LTCs. These are most effective at reducing psychological distress in those with physical and mental LTCs. Further research is needed to identify the effective components of interventions for people with two or more physical LTCs and which outcome is most appropriate for detecting this change.


Assuntos
Terapia Comportamental , Ensaios Clínicos Controlados Aleatórios como Assunto , Humanos , Terapia Comportamental/métodos , Qualidade de Vida , Múltiplas Afecções Crônicas/terapia , Múltiplas Afecções Crônicas/psicologia
8.
Health Expect ; 27(3): e14070, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38751247

RESUMO

BACKGROUND: The number of people living with diabetes is rising worldwide and a higher prevalence of diabetes has been linked to those experiencing socioeconomic deprivation. Self-management strategies are vital and known to reduce the risks of long-term complications amongst people living with diabetes. Lack of knowledge about self-care activity required to manage diabetes is a key barrier to successful self-management. Self-management interventions can be less effective in socioeconomically deprived populations which can increase the risk of exacerbating health inequalities. The purpose of this review is to identify and synthesise qualitative evidence on the barriers and facilitators of self-management of diabetes amongst people who are socioeconomically disadvantaged. METHODS: MEDLINE, EMBASE, AMED, PsycINFO and CINAHL Plus were searched for qualitative studies concerning self-management of multiple long-term conditions amongst socioeconomically disadvantaged populations. Relevant papers which focused on diabetes were identified. Data were coded and thematically synthesised using NVivo. FINDINGS: From the search results, 79 qualitative studies were identified after full-text screening and 26 studies were included in the final thematic analysis. Two overarching analytical themes were identified alongside a set of subthemes: (1) Socioeconomic barriers to diabetes self-management; healthcare costs, financial costs of healthy eating, cultural influences, living in areas of deprivation, competing priorities and time constraints, health literacy, (2) facilitators of diabetes self-management; lifestyle and having goals, support from healthcare providers, informal support. DISCUSSION: Self-management of diabetes is challenging for people experiencing socioeconomic deprivation due to barriers associated with living in areas of deprivation and financial barriers surrounding healthcare, medication and healthy food. Support from healthcare providers can facilitate self-management, and it is important that people with diabetes have access to interventions that are designed to be inclusive from a cultural perspective as well as affordable. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory group contributed to the research questions and interpretation of the qualitative findings by reflecting on the themes developed.


Assuntos
Diabetes Mellitus , Pesquisa Qualitativa , Autogestão , Humanos , Diabetes Mellitus/terapia , Fatores Socioeconômicos , Pobreza , Autocuidado
9.
PLoS One ; 19(4): e0299163, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38630653

RESUMO

BACKGROUND: Opioid overdose was declared a public health emergency in the United States, but much of the focus has been on adults. Child and adolescent exposure and access to unused prescription-opioid medications is a big concern. More research is needed on the trend of pediatric (age 0-17) prescription-opioid overdose emergency department (ED) visits in the United States, particularly during the COVID-19 pandemic year. METHODS: This retrospective epidemiological study used the 2008-2020 Nationwide Emergency Department Sample to provide a national estimate of ED visits related to prescription-opioid overdose. Inclusion criteria were 0-17-year-old patients treated at the ED due to prescription-opioid overdose. Eligible visits were identified if their medical records included any administrative billing codes for prescription-opioid overdose. National estimates were broken down by age groups, sex, geographic region, primary payer, median household income by zip code, ED disposition, and hospital location/teaching status. Incidence rate per 100,000 U.S. children was calculated for age groups, sex, and geographic region. RESULTS: Overall, the prescription-opioid overdose ED visits for patients from 0-17 years old in the United States decreased by 22% from 2008 to 2019, then increased by 12% in 2020. Most patients were discharged to home following their ED visit; however, there was a 42% increase in patients admitted from 2019 to 2020. The prescription-opioid overdose rate per 100,000 U.S. children was highest in the 0 to 1 and 12 to 17 age groups, with the 12 to 17 group increasing by 27% in 2020. ED visits in the West and Midwest saw prescription-opioid visits increase by 58% and 20%, respectively, from 2019-2020. CONCLUSIONS: Prescription-opioid overdose ED visits among U.S. children and adolescents decreased over the past decade until 2019. However, there was a substantial increase in ED visits from 2019 to 2020, suggesting the potential impact due to the then-emerging COVID-19 pandemic. Findings suggest focusing on young children and adolescents to reduce further prescription-opioid overdoses in the United States.


Assuntos
COVID-19 , Overdose de Drogas , Overdose de Opiáceos , Medicamentos sob Prescrição , Adulto , Adolescente , Humanos , Estados Unidos , Criança , Pré-Escolar , Recém-Nascido , Lactente , Analgésicos Opioides , Overdose de Opiáceos/epidemiologia , Estudos Retrospectivos , Pandemias , Overdose de Drogas/epidemiologia , Serviço Hospitalar de Emergência , Prescrições , COVID-19/epidemiologia
10.
Health Expect ; 27(2): e14046, 2024 04.
Artigo em Inglês | MEDLINE | ID: mdl-38623837

RESUMO

BACKGROUND: Globally, it is estimated that one in three adults live with two or more long-term conditions (multiple long-term conditions, MLTCs), that require self-management. People who experience socioeconomic deprivation face significant health inequalities due to a range of interrelated characteristics that lead to a lack of resources and opportunities. Previous research with underserved populations indicate low levels of trust towards primary care providers and potential barriers for developing patient-healthcare professional relationships. The purpose of this paper is to explore the barriers and facilitators to self-managing MLTCs, amongst people who experience socioeconomic deprivation. METHODS: Semistructured one-to-one interviews with adults (n = 28) living in London and Sheffield, United Kingdom with MLTCs who are experiencing socioeconomic deprivation. Participants were recruited through general practices, community channels and social media. Data were analysed in NVivo using reflexive thematic analysis methods. FINDINGS: Four analytical themes were developed: (1) challenges in accessing healthcare services, financial assistance, and cultural awareness; (2) empowerment and disempowerment through technology, including digital exclusion, and use of technology; (3) impact and causes of exclusion on self-management, including social isolation, area-based and economic exclusion, and health-related stigma and (4) adapting self-management strategies, including cost-effective, and culturally/lifestyle appropriate strategies. CONCLUSIONS: Future health interventions and services need to be developed with consideration of the combined complexities of managing MLTCs while experiencing socioeconomic deprivation. Increased awareness in practitioners and commissioners of the complexities surrounding the lives of people experiencing socioeconomic deprivation, and the need for targeted strategies to promote self-management of MLTCs are of great importa. PATIENT OR PUBLIC CONTRIBUTION: A patient advisory group contributed to all stages of the study, including providing important feedback on study documents (topic guides and recruitment materials), as well as providing critical insights surrounding the interpretation of interview data.


Assuntos
Autogestão , Adulto , Humanos , Pesquisa Qualitativa , Reino Unido , Área Carente de Assistência Médica , Fatores Socioeconômicos
11.
PLOS Digit Health ; 3(1): e0000440, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38271320

RESUMO

Key features of virtual reality (VR) that impact the effectiveness of pain reduction remain unknown. We hypothesized that specific features of the VR experience significantly impact VR's effectiveness in reducing pain during pediatric burn dressing care. Our randomized controlled trial included children 6 to 17 years (inclusive) who were treated in the outpatient clinic of an American Burn Association-verified pediatric burn center. Participants were randomly assigned (1:1:1) to active VR (playing the VR), passive VR (immersed in the same VR environment without interactions), or standard-of-care. On a scale from 0 to 100, participants rated overall pain (primary outcome) and features of the VR experience (game realism, fun, and engagement). Path analysis assessed the interrelationships among these VR key features and their impact on self-reported pain scores. From December 2016 to January 2019, a total of 412 patients were screened for eligibility, and 90 were randomly assigned (31 in the active VR group, 30 in the passive VR group, and 29 in the standard-of-care group). The current study only included those in the VR groups. The difference in median scores of VR features was not statistically significant between the active (realism, 77.5 [IQR: 50-100]; fun, 100 [IQR: 81-100]; engagement, 90 [IQR: 70-100]) and passive (realism, 72 [IQR: 29-99]; fun, 93.5 [IQR: 68-100]; engagement, 95 [IQR: 50-100]) VR distraction types. VR engagement had a significant direct (-0.39) and total (-0.44) effect on self-reported pain score (p<0.05). Key VR features significantly impact its effectiveness in pain reduction. The path model suggested an analgesic mechanism beyond distraction. Differences in VR feature scores partly explain active VR's more significant analgesic effect than passive VR. Trial Registration: ClinicalTrials.gov Identifier: NCT04544631.

12.
BMC Health Serv Res ; 24(1): 92, 2024 Jan 17.
Artigo em Inglês | MEDLINE | ID: mdl-38233917

RESUMO

INTRODUCTION: Self-management interventions consist of multiple components to support people in the management of medical, emotional, and behavioural aspects of their condition, and aim to improve quality of life, function, and other outcomes. A systematic review of self-management interventions in Parkinson's showed no conclusive evidence for effectiveness of specific self-management approaches in Parkinson's to date but identified several potentially useful components. AIM: To identify the key required components for self-management in people with Parkinson's by synthesising evidence from a body of primary qualitative evidence and systematic reviews, and to explore which of these key components should be incorporated into trials of self-management in Parkinson's. METHOD: A mixed-methods synthesis was conducted. We combined data from two primary qualitative studies and a systematic review of qualitative studies that focused on self-management in Parkinson's to identify key intervention components. These were then mapped onto the results of a systematic review of Randomised Controlled Trials (RCTs) using matrices. First, data were extracted from the qualitative studies with people with Parkinson's and healthcare professionals on the key self-management components in this population. Second, a matrix table was created to map the identified Parkinson's specific self-management components against potential effectiveness from published RCTs of self-management interventions. RESULTS: Synthesis of qualitative data identified 15 potential self-management components. These 15 components included components needed to start self-managing (e.g., information, skill acquirement) and components needed to maintain self-managing (e.g., self-motoring, increasing motivation). From 18 RCTs, interventions varied in how many components were included (range 1-10). Trials reporting significant beneficial effects of their intervention included a higher number of components (4 or more self-management components) than trials without significant findings (1-3 self-management components). CONCLUSION: Fifteen key self-management components were identified that should be incorporated into interventions or programs of self-management in Parkinson's. No current trial has incorporated all aspects, but a higher number of these key components appears to make trials of self-management interventions more likely to be successful.


Assuntos
Doença de Parkinson , Autogestão , Humanos , Doença de Parkinson/terapia , Pessoal de Saúde
13.
Trials ; 24(1): 793, 2023 Dec 05.
Artigo em Inglês | MEDLINE | ID: mdl-38053209

RESUMO

BACKGROUND: The Live Well with Parkinson's Self-Management Toolkit is designed for use in the NHS to support people with Parkinson's, their carers and health professionals in managing motor and non-motor symptoms and promoting well-being. The Toolkit was developed based on theory-based behaviour change and self-management techniques in consultation with people living with Parkinson's and health and social care practitioners. There are digital (e-Toolkit) and paper (manual) versions. METHODS: Single-blind two-arm randomised controlled trial RCT of clinical effectiveness and cost-effectiveness of the Toolkit, facilitated by up to six sessions with a trained non-specialist supporter, in improving quality of life. People with Parkinson's will be assessed at baseline, 6 and 12 months. Assessors will be blind to the treatment group. The primary outcome measure is the Parkinson's Disease Questionnaire (PDQ-39, Parkinson's related quality of life) score at 12 months. Secondary outcome measures include the MDS Unified Parkinson's Disease Rating Scale (Part I, II, III, IV), EQ-5D, and a Client Service Receipt Inventory shortened, adapted for Parkinson's. Carer outcomes include the Zarit Carer Burden Inventory and Carer Quality of Life Questionnaire for Parkinsonism. A total of 338 people with Parkinson's, and their carers if appropriate, will be recruited from diverse settings across England. Those with advanced dementia, at end-of-life or with atypical Parkinsonism will be excluded. A parallel mixed methods process evaluation will explore the factors promoting or inhibiting implementation, uptake, use, effectiveness and cost-effectiveness of the Toolkit and sessions. DISCUSSION: If successful, the Live Well with Parkinson's Toolkit could be used as a model for other complex long-term disorders, including dementia. This would bridge existing gaps in the NHS (as shown by the national Parkinson's audit data), by enabling patients and carers to access personalised information, advice and support on symptom management and 'living well' with Parkinson's. TRIAL REGISTRATION: ISRCTN92831552. Registered on 26th Oct 2021.


Assuntos
Demência , Doença de Parkinson , Autogestão , Humanos , Análise Custo-Benefício , Doença de Parkinson/diagnóstico , Doença de Parkinson/terapia , Doença de Parkinson/complicações , Qualidade de Vida , Método Simples-Cego , Demência/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto
14.
Lancet ; 402 Suppl 1: S80, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37997126

RESUMO

BACKGROUND: Mild cognitive impairment (MCI) affects 5-20% of older people in the UK, but often goes undiagnosed and is associated with increased risk of dementia. Targeting risk factors such as physical inactivity and social isolation through behaviour-change interventions could reduce this risk. However, it is unclear how MCI impacts engagement with these interventions. We aimed to explore how MCI affects goal-setting priorities and progress towards these goals in a behaviour-change intervention (HomeHealth). METHODS: This was a secondary analysis of a completed randomised controlled trial, HomeHealth, which started in January 2021 and recruited 386 participants aged 65 years and older with mild frailty according to the Clinical Frailty Scale from general practices and the community in England. Participants were randomly assigned (1:1) to receive either the HomeHealth intervention (n=195) or treatment as usual (n=191) for 6 months. An evidence-based behaviour change intervention supported older people to work on goals to maintain independence, addressing factors affecting capability, opportunity, and motivation. Goal setting and progress information was available for 167 (86%) of 195 participants who received the intervention. The type of goal set and goal progress (scale 0-2) were compared between participants with healthy cognition, those with potential MCI, and those with probable dementia (rated with Montreal Cognitive Assessment [MoCA]). Qualitative semi-structured interviews were conducted between Aug 16, 2022, and May 18, 2023, with 29 people with MCI who received the intervention, to explore the perceived impact of MCI on goal setting, progress, and maintenance. Data were analysed using codebook thematic analysis. FINDINGS: The mean age of participants was 80·8 years, 105 (63%) of 167 were women and 158 (95%) were white. 54 (32%) of 167 participants had healthy cognition, 94 (56%) had potential MCI, and 19 (11%) probable dementia. Distribution of goal type was similar across the three groups, with most participants setting mobility goals. Progress towards goals (scale 0-2) was similar in people with healthy cognition and potential MCI (1·24 and 1·18, respectively) but lower in those with probable dementia (0·76). However, all met the moderate progress cutoff (0·66-1·32). People with MCI recognised their cognition was getting worse but did not feel the HomeHealth intervention could help. Rather than setting new goals, people with MCI built on existing behaviours. Many did not initially understand the intervention and felt they would have benefitted from contact in between sessions or from more sessions to help goal progress. Once the sessions ended, less than a quarter of participants maintained the goal progress. INTERPRETATION: Interventions to help older adults age well can be successfully delivered in people with MCI, to help them set and make progress towards goals. However, to maintain changes, more intense support is needed. FUNDING: National Institute for Health and Care Research (NIHR) School for Primary Care Research, NIHR Health Technology Assessment.


Assuntos
Disfunção Cognitiva , Demência , Fragilidade , Humanos , Feminino , Idoso , Idoso de 80 Anos ou mais , Masculino , Objetivos , Disfunção Cognitiva/terapia , Inglaterra , Demência/terapia , Análise Custo-Benefício , Qualidade de Vida
15.
PLoS One ; 18(11): e0294279, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37972014

RESUMO

OBJECTIVES: The objective of this study was to determine the reduction in prescribed opioid pain dosage units to pediatric patients experiencing acute pain and to assess patient satisfaction with pain control 90-day post discharge following the 2017 Ohio opioid prescribing cap law. METHODS: The retrospective chart review included 960 pediatric (age 0-18 years) burn injury and knee arthroscopy patients treated between August 1, 2015-August 31, 2019. Prospectively, legal guardians completed a survey for a convenience sample of 50 patients. Opioid medications (days and morphine milligram equivalents (MMEs)/kg) prescribed at discharge before and after the Ohio law implementation were collected. Guardians reported experience and satisfaction with their child's opioid prescription at 90-days post discharge. RESULTS: From pre-law to post-law, there was a significant decrease (p<0.001) within the burn and knee cohorts in the median days (1.7 to 1.0 and 5.0 to 3.8, respectively) and median total MMEs prescribed (15.0 to 2.5 and 150.0 to 90.0, respectively). An interrupted time series analysis revealed a statistically significant decrease in MMEs/kg and days prescribed at discharge when the 2017 Ohio opioid prescription law went into effect, with an abrupt level change. Prospectively, more than half of participants were satisfied (72% burn and 68% knee) with their pain control and felt they received the right amount of medication (84% burn and 56% knee). Inpatient opioid use was not changed pre- and post-law. CONCLUSIONS: Discharge opioids prescribed for pediatric burn and knee arthroscopy procedures has decreased from 2015-2019. Caregivers varied greatly in their satisfaction with pain control and the amount of opioid prescribed.


Assuntos
Analgésicos Opioides , Queimaduras , Humanos , Criança , Recém-Nascido , Lactente , Pré-Escolar , Adolescente , Analgésicos Opioides/uso terapêutico , Estudos Retrospectivos , Assistência ao Convalescente , Dor Pós-Operatória/tratamento farmacológico , Satisfação do Paciente , Alta do Paciente , Padrões de Prática Médica , Prescrições de Medicamentos , Prescrições , Queimaduras/tratamento farmacológico , Queimaduras/epidemiologia , Satisfação Pessoal
16.
Parkinsons Dis ; 2023: 9732217, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37675146

RESUMO

Background: Cognitive impairment is common in Parkinson's disease (PD) and associated with lower quality of life. Cognitive impairment in PD manifests differently to other dementia pathologies. Provision of optimal care requires knowledge about the support needs of this population. Methods: Eleven people with PD and cognitive impairment (PwP), 10 family caregivers, and 27 healthcare professionals were purposively sampled from across the United Kingdom. Semistructured interviews were conducted in 2019-2021, audio-recorded, transcribed, and analysed using reflexive thematic analysis. Results: Cognitive impairment in PD conveyed increased complexity for clinical management and healthcare interactions, the latter driven by multifactorial communication difficulties. Techniques that helped included slow, simple, and single messages, avoiding topic switching. Information and emotional support needs were often unmet, particularly for caregivers. Diagnostic pathways were inconsistent and awareness of cognitive impairment in PD was poor, both contributing to underdiagnosis. Many felt that PwP and cognitive impairment fell through service gaps, resulting from disjointed, nonspecific, and underresourced services. Personalised care was advocated through tailoring to individual needs of PwP and caregivers facilitated by flexibility, time and continuity within services, and supporting self-management. Conclusions: This study highlights unmet need for people with this complex condition. Clinicians should adapt their approach and communication techniques for this population and provide tailored information and support to both PwP and caregivers. Services need to be more streamlined and collaborative, providing more time and flexibility. There is a need for wider awareness and deeper understanding of this condition and its differences from other types of dementia.

17.
PLOS Digit Health ; 2(9): e0000231, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37747893

RESUMO

Opioids are the most frequently used pain medications by US burn centers to control severe procedural pain during wound care. Concerns for long-term opioid use have prompted the exploration of non-pharmaceutical interventions, such as virtual reality (VR), for procedural pain management. The primary objective of this pilot study was to evaluate the feasibility and efficacy of VR pain alleviation treatment in reducing adult burn patients' perceived pain during burn dressing changes. Adult patients aged 18-70 years were recruited from the inpatient unit of a single American Burn Association-verified burn center between May 2019 and February 2020 and randomly assigned to one of three arms. Active VR participants played four VR games; passive VR participants were immersed in the same VR environment without the interaction elements; and a standard of care control group. 71 patients were screened for eligibility and 33 were deemed eligible to approach for informed consent, with 14 agreeing to participate in this study. Of these 14 patients, 4 were randomly assigned to the active VR, 4 to the passive VR, and 6 to the control group. Self-reported overall pain was lowest among participants in the active VR (dressing 1 = 41.3, dressing 2 = 61.0, and dressing 3 = 72.7) and highest among participants in the passive VR (dressing 1 = 58.3, dressing 2 = 74.5, and dressing 3 = 89.0) across all three dressing changes. Self-reported worst pain was lowest among the active VR at the first and last dressing (64.3 and 92.2, respectively), but the control group has the lowest self-reported worst pain at the second dressing (71.3). VR is a useful non-pharmacological tool for pain distraction but designing and implementing clinical research studies face many challenges in real-world medical settings. Lessons from this study have important implications for future VR studies by other researchers. Trial Registration: ClinicalTrials.gov Identifier: NCT04545229.

18.
J Public Health (Oxf) ; 45(4): 970-1041, 2023 Nov 29.
Artigo em Inglês | MEDLINE | ID: mdl-37553102

RESUMO

BACKGROUND: Long-term conditions (LTCs) are prevalent in socio-economically deprived populations. Self-management interventions can improve health outcomes, but socio-economically deprived groups have lower participation in them, with potentially lower effectiveness. This review explored whether self-management interventions delivered to people experiencing socio-economic deprivation improve outcomes. METHODS: We searched databases up to November 2022 for randomized trials. We screened, extracted data and assessed the quality of these studies using Cochrane Risk of Bias 2 (RoB2). We narratively synthesized all studies and performed a meta-analysis on eligible articles. We assessed the certainty of evidence using GRADE for articles included in the meta-analysis. RESULTS: The 51 studies included in this review had mixed findings. For the diabetes meta-analysis, there was a statistically significant pooled reduction in haemoglobin A1c (-0.29%). We had moderate certainty in the evidence. Thirty-eight of the study interventions had specific tailoring for socio-economically deprived populations, including adaptions for low literacy and financial incentives. Each intervention had an average of four self-management components. CONCLUSIONS: Self-management interventions for socio-economically deprived populations show promise, though more evidence is needed. Our review suggests that the number of self-management components may not be important. With the increasing emphasis on self-management, to avoid exacerbating health inequalities, interventions should include tailoring for socio-economically deprived individuals.


Assuntos
Autogestão , Humanos , Países Desenvolvidos , Pobreza , Renda
19.
PLoS One ; 18(2): e0282036, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36809286

RESUMO

BACKGROUND: Multiple long-term conditions are rising across all groups but people experiencing socioeconomic deprivation are found to have a higher prevalence. Self-management strategies are a vital part of healthcare for people with long-term conditions and effective strategies are associated with improved health outcomes in a variety of health conditions. The management of multiple long-term conditions are, however, less effective in people experiencing socioeconomic deprivation, leaving them more at risk of health inequalities. The purpose of this review is to identify and synthesise qualitative evidence on the barriers and facilitators of self-management on long-term conditions in those experiencing socioeconomic deprivation. METHODS: MEDLINE, EMBASE, AMED, PsycINFO and CINAHL Plus were searched for qualitative studies concerning self-management of multiple long-term conditions among socioeconomically disadvantaged populations. Data were coded and thematically synthesised using NVivo. FINDINGS: From the search results, 79 relevant qualitative studies were identified after the full text screening and 11 studies were included in the final thematic synthesis. Three overarching analytical themes were identified alongside a set of sub-themes: (1) Challenges of having multiple long-term conditions; prioritisation of conditions, impact of multiple long-term conditions on mental health and wellbeing, polypharmacy, (2) Socioeconomic barriers to self-management; financial, health literacy, compounding impact of multiple long-term conditions and socioeconomic deprivation, (3) Facilitators of self-management in people experiencing socioeconomic deprivation; maintaining independence, 'meaningful' activities, support networks. DISCUSSION: Self-management of multiple long-term conditions is challenging for people experiencing socioeconomic deprivation due to barriers around financial constraints and health literacy, which can lead to poor mental health and wellbeing. To support targeted interventions, greater awareness is needed among health professionals of the barriers/challenges of self-management among these populations.


Assuntos
Autogestão , Humanos , Saúde Mental , Pessoal de Saúde/psicologia , Pesquisa Qualitativa , Fatores Socioeconômicos
20.
Int J Behav Med ; 30(5): 585-604, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36284042

RESUMO

BACKGROUND: People with advanced cancer experience psychological distress due to physical symptoms, functional decline, and a limited prognosis. Difficult thoughts, feelings, and emotions may exacerbate distress and lead to avoidance of these experiences which is sometimes referred to as experiential avoidance (EA). Advanced cancer patients may be more likely to engage in EA especially when no obvious solutions to their problems exist. This study aims to examine the terms used to describe EA, the processes that might indicate EA, associations between EA and psychological distress, and to understand why individuals might engage in EA. METHODS: A mixed-methods review. Literature search of Medline, Embase, Psych INFO, and CINAHL 1980-October 2019. INCLUSION: adults ≥ 18 years; advanced cancer not amenable to cure. EXCLUSION: no measures of EA or psychological distress. Risk of bias and study quality assessed. Evidence of statistical techniques collected. Themes coded, grouped, and developed based on meaning. RESULTS: Nineteen studies identified, 13 quantitative studies and 6 qualitative. The quantitative of which 6 compared early-stage cancers with advanced cancers and examined subscales of EA alongside mood, quality of life, and psychological distress. EA covers a range or terms of which 'avoidant coping' is the commonest. EA is manifest as cognitive, behavioural, and emotional avoidance. A thematic synthesis suggests the function of EA is to protect people from distress, and from confronting or expressing difficult emotions by avoiding communication about cancer, controlling negative information, and maintaining normality and hope and optimism. CONCLUSIONS: EA may be beneficial in the short term to alleviate distress, but in the longer term, it can impair function and limit engagement in life. Greater clinical awareness of the complexity of EA behaviours is needed. Clinicians and researchers should define EA precisely and be aware of the function it may serve in the short and longer term. Future research studies may consider using specific measures of EA as a primary outcome, to assess the impact of psychological interventions such as ACT.


Assuntos
Neoplasias , Estresse Psicológico , Adulto , Humanos , Estresse Psicológico/psicologia , Qualidade de Vida/psicologia , Emoções , Afeto , Neoplasias/psicologia
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