Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 250
Filtrar
Mais filtros

Base de dados
Tipo de documento
Intervalo de ano de publicação
1.
Childs Nerv Syst ; 40(2): 487-494, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37676296

RESUMO

PURPOSE: We aim to determine whether preoperatively initiated gabapentin for pain control impacts the percentage of rootlets cut during monitored, limited laminectomy selective dorsal rhizotomy (SDR) procedure. METHODS: This retrospective cohort study includes participants with cerebral palsy who had SDR for treatment of spasticity between 2010 and 2019 at a single-institution tertiary care center. One-level laminectomy SDR aimed to evaluate the cauda equina roots from levels L2-S1 with EMG monitoring. Gabapentin titration began 3 weeks prior to SDR. Data was analyzed using simple linear regression. Thirty-one individuals met inclusion criteria. Mean age was 7 years, 4 months. Eighteen participants (58%) identified as male, 12 (39%) female, and one (3%) non-binary. Thirty (97%) had bilateral CP. Sixteen (52%) were GMFCS II, four (13%) GMFCS III, five (16%) GMFCS IV, and six (19%) GMFCS V. RESULTS: Mean percentage of rootlets transected was 50.75% (SD 6.00, range 36.36-60.87). There was no relationship between the dose of gabapentin at time of SDR and percentage of rootlets cut with a linear regression slope of - 0.090 and an R2 of 0.012 (P = 0.56). CONCLUSION: Results indicate that preoperative initiation of gabapentin did not impact the percentage of rootlets transected. Thus, gabapentin can be initiated prior to SDR at moderate dosages without impacting SDR surgical outcomes.


Assuntos
Paralisia Cerebral , Rizotomia , Humanos , Masculino , Feminino , Criança , Rizotomia/métodos , Gabapentina , Estudos Retrospectivos , Raízes Nervosas Espinhais/cirurgia , Paralisia Cerebral/cirurgia , Espasticidade Muscular/cirurgia , Dor , Resultado do Tratamento
2.
Artigo em Inglês | MEDLINE | ID: mdl-38816601

RESUMO

OBJECTIVES: Antenatal education (ANE) is part of National Health Service (NHS) care and is recommended by The National Institute for Health and Care Excellence (NICE) to increase birth preparedness and help pregnant women/birthing people develop coping strategies for labour and birth. We aimed to understand antenatal educator views about how current ANE supports preparedness for childbirth, including coping strategy development with the aim of identifying targets for improvement. METHODS: A United Kingdom wide, cross-sectional online survey was conducted between October 2019 and May 2020. Antenatal educators including NHS midwives and private providers were purposively sampled. Counts and percentages were calculated for closed responses and thematic analysis used for open text responses. RESULTS: Ninety-nine participants responded, 62% of these did not believe that ANE prepared women for labour and birth. They identified practical barriers to accessing ANE, particularly for marginalised groups, including financial and language barriers. Educators believe class content is medically focused, and teaching is of variable quality with some midwives being ill-prepared to deliver antenatal education. 55% of antenatal educators believe the opportunity to develop coping strategies varies between location and educators and only those women who can pay for non-NHS classes are able to access all the coping strategies that can support them with labour and birth. CONCLUSIONS FOR PRACTICE: Antenatal educators believe current NHS ANE does not adequately prepare women for labour and birth, leading to disparities in birth preparedness for those who cannot access non-NHS classes. To reduce this healthcare inequality, NHS classes need to be standardised, with training for midwives in delivering ANE enhanced.

3.
Lancet ; 400 Suppl 1: S59, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36930005

RESUMO

BACKGROUND: The percentage of people in Wales experiencing severe mental health issues more than doubled during the COVID-19 pandemic. Additionally, hundreds of people in Wales wait more than a year for help with their mental health. The EmotionMind Dynamic (EMD) programme is a six-session programme over 3 months involving self-reflective introspection, self-analysis, problem solving, goal setting, and action taking. Furthermore, this programme challenges negative self-perception and increases self-awareness, self-confidence, and self-esteem. We aimed to estimate the social return on investment of EMD lifestyle coaching, both face-to-face and online formats, by comparing the costs of running the programme with the social value generated from clients as measured by improvement in self-confidence and mental wellbeing. METHODS: We included 15 clients from previous face-to-face EMD coaching and 17 clients from a new online version of EMD. For face-to-face clients, quantitative data were collected retrospectively with a one-time only questionnaire. For new online clients, quantitative data were collected from baseline and follow-up questionnaires. Qualitative data were collected after intervention from interviews with both groups. Outcomes from questionnaires for both groups included changes in mental wellbeing measured with the Short Warwick Edinburgh Mental Wellbeing Scale (SWEMWBS) and self-efficacy assessed with the General Self-Efficacy Scale (GSES). FINDINGS: For every £1 invested, lifestyle coaching generated social values ranging from £4·12 to £7·08 for face-to-face clients compared with £2·37 to £3·35 for online participants. Quantitative and qualitative data from questionnaires and interviews indicated that many clients had improved mental wellbeing and self-efficacy. All 15 face-to-face clients and 11 (65%) of 17 online clients reported an increase of 5 points or more on the SWEMWBS questionnaire. Similarly, all 15 face-to-face clients and ten (59%) of 17 online clients reported an increase of 5 points or more on the GSES questionnaire. INTERPRETATION: The results showed that both face-to-face and online formats of the EMD lifestyle coaching generated a positive social return on investment ratios. With continued long waiting lists for people with mental health challenges, face-to-face and online lifestyle coaching might become more essential across statutory, private, and third sectors to meet the growing demand for mental health support. FUNDING: Accelerate: the Welsh Health Innovation and Technology Accelerator.


Assuntos
COVID-19 , Tutoria , Humanos , Pandemias , Estudos Retrospectivos , COVID-19/epidemiologia , Estilo de Vida
4.
Can J Diet Pract Res ; 84(2): 98-106, 2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-36876852

RESUMO

Purpose: FoodNOW (Food to eNhance Our Wellness) engaged in assessment of simulated households that include a person living with HIV/AIDS (PLWHA) in Nova Scotia to determine if a basic nutritious diet is affordable.Methods: We used supermarket websites to cost food and beverage items listed in the National Nutritious Food Basket (NNFB) for simulated households, each with a PLWHA. Food costing methodologies were co-developed and adapted with community members in response to barriers presented by the COVID-19 pandemic.Results: We found that simulated households, each with one PLWHA, that had a potential deficit after monthly expenses were a household of four on Income Assistance (-$1,058.70), a lone mother with two children on Income Assistance (-$973.65), a lone man on Income Assistance (-$677.40), and a household of four with one minimum-wage earner (-$383.45).Conclusions: Nova Scotia households with a PLWHA living on Income Assistance or with a minimum-wage earner cannot reasonably afford a nutritious diet in addition to basic household expenses. Using these food costing data can allow dietitians to efficiently inform government action and policy change to improve the health and wellness of individuals and families.


Assuntos
COVID-19 , Infecções por HIV , Masculino , Criança , Humanos , Nova Escócia , Pandemias , Dieta , Abastecimento de Alimentos
5.
Prev Med ; 165(Pt B): 107012, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-35248683

RESUMO

We report results from a single-blinded randomized controlled trial examining financial incentives for smoking cessation among 249 pregnant and newly postpartum women. Participants included 169 women assigned to best practices (BP) or BP plus financial incentives (BP + FI) for smoking cessation available through 12-weeks postpartum. A third condition included 80 never-smokers (NS) sociodemographically-matched to women who smoked. Trial setting was Burlington, Vermont, USA, January, 2014 through January, 2020. Outcomes included 7-day point-prevalence abstinence antepartum and postpartum, and birth and other infant outcomes during 1st year of life. Reliability and external validity of results were assessed using pooled results from the current and four prior controlled trials coupled with data on maternal-smoking status and birth outcomes for all 2019 singleton live births in Vermont. Compared to BP, BP + FI significantly increased abstinence early- (AOR = 9.97; 95%CI, 3.32-29.93) and late-pregnancy (primary outcome, AOR = 5.61; 95%CI, 2.37-13.28) and through 12-weeks postpartum (AOR = 2.46; CI,1.05-5.75) although not 24- (AOR = 1.31; CI,0.54-3.17) or 48-weeks postpartum (AOR = 1.33; CI,0.55-3.25). There was a significant effect of trial condition on small-for-gestational-age (SGA) deliveries (χ2 [2] = 9.01, P = .01), with percent SGA deliveries (+SEM) greatest in BP, intermediate in BP + FI, and lowest in NS (17.65 + 4.13, 10.81 + 3.61, and 2.53 + 1.77, respectively). Reliability analyses supported the efficacy of financial incentives for increasing abstinence antepartum and postpartum and decreasing SGA deliveries; external-validity analyses supported relationships between antepartum cessation and SGA risk. Adding financial incentives to Best Practice increases smoking cessation among antepartum and postpartum women and improves other maternal-infant outcomes. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02210832.


Assuntos
Abandono do Hábito de Fumar , Gravidez , Feminino , Humanos , Abandono do Hábito de Fumar/métodos , Motivação , Reprodutibilidade dos Testes , Período Pós-Parto , Fumar
6.
J Neurosci ; 40(7): 1538-1548, 2020 02 12.
Artigo em Inglês | MEDLINE | ID: mdl-31896672

RESUMO

Our sensory impressions of pain are generally thought to represent the noxious properties of an agent but can be influenced by the predicted level of threat. Predictions can be sourced from higher-order cognitive processes, such as schemas, but the extent to which schemas can influence pain perception relative to bottom-up sensory inputs and the underlying neural underpinnings of such a phenomenon are unclear. Here, we investigate how threat predictions generated from learning a cognitive schema lead to inaccurate sensory impressions of the pain stimulus. Healthy male and female participants first detected a linear association between cue values and stimulus intensity and rated pain to reflect the linear schema when compared with uncued heat stimuli. The effect of bias on pain ratings was reduced when prediction errors (PEs) increased, but pain perception was only partially updated when measured against stepped increases in PEs. Cognitive, striatal, and sensory regions graded their responses to changes in predicted threat despite the PEs (p < 0.05, corrected). Individuals with more catastrophic thinking about pain and with low mindfulness were significantly more reliant on the schema than on the sensory evidence from the pain stimulus. These behavioral differences mapped to variability in responses of the striatum and ventromedial prefrontal cortex. Thus, this study demonstrates a significant role of higher-order schemas in pain perception and indicates that pain perception is biased more toward predictions and less toward nociceptive inputs in individuals who report less mindfulness and more fear of pain.SIGNIFICANCE STATEMENT This study demonstrates that threat predictions generated from cognitive schemas continue to influence pain perception despite increasing prediction errors arising in pain pathways. Individuals first formed a cognitive schema of linearity in the relationship between the cued threat value and the stimulus intensity. Subsequently, the linearity was reduced gradually, and participants partially updated their evaluations of pain in relation to the stepped increases in prediction errors. Individuals who continued to rate pain based more on the predicted threat than on changes in nociceptive inputs reported high pain catastrophizing and less mindful-awareness scores. These two affects mapped to activity in the ventral and dorsal striatum, respectively. These findings direct us to a significant role of top-down processes in pain perception.


Assuntos
Antecipação Psicológica/fisiologia , Encéfalo/fisiologia , Processos Mentais/fisiologia , Noxas , Percepção da Dor/fisiologia , Adulto , Mapeamento Encefálico , Catastrofização , Cognição/fisiologia , Corpo Estriado/fisiopatologia , Sinais (Psicologia) , Feminino , Temperatura Alta/efeitos adversos , Humanos , Imageamento por Ressonância Magnética , Masculino , Pessoa de Meia-Idade , Medição da Dor , Limiar da Dor/fisiologia , Sensação/fisiologia , Córtex Somatossensorial/fisiopatologia , Adulto Jovem
7.
Haemophilia ; 27(3): 375-382, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-33866654

RESUMO

INTRODUCTION: The Patient-Reported Outcomes Measurement Information System (PROMIS) provides measures of health status that assess physical, mental and social well-being from the patient perspective. PROMIS measures are used in clinical practice and research across various patient populations but are not yet validated among patients with haemophilia. AIM: Evaluate the sensitivity of PROMIS to indicators of haemophilia clinical severity and compare PROMIS measures to those from other PRO instruments. METHODS: Male adults with haemophilia (n = 115) completed the PROMIS-29 short form which includes 4 questions for each of 7 domains: depression, anxiety, ability to participate in social roles and activities, physical function, pain interference, fatigue and sleep disturbance. Participant responses for each domain were scored on a T-score metric with a mean of 50 and a standard deviation of 10 based on the original PROMIS reference sample of US adults. Participants also completed other generic and haemophilia-specific health-related quality of life questionnaires. RESULTS: Participants who experienced higher pain and depression levels reported significantly worse health in every PROMIS domain compared with their peers. Those who had recently needed to use crutches, visit an emergency department or were currently unemployed or disabled also reported poor PROMIS scores on most domains. Construct validity was supported by correlations between PROMIS domain scores and domain scores reported using the EQ-5D-5L and Haem-A-QoL. CONCLUSION: The PROMIS instrument provides a potentially valuable tool to evaluate the impact of haemophilia and suggests usefulness in research and clinical practice.


Assuntos
Hemofilia A , Qualidade de Vida , Adulto , Ansiedade/etiologia , Estudos Transversais , Hemofilia A/complicações , Humanos , Masculino , Inquéritos e Questionários
8.
Haemophilia ; 27(1): 60-68, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33141984

RESUMO

INTRODUCTION: In patients with haemophilia, general psychological distress as measured by the National Comprehensive Cancer Network (NCCN) distress thermometer has been associated with pain, disability and increased healthcare utilization. AIMS: To develop and validate a measure of haemophilia-related distress. METHODS: After qualitative interviews, the Hemophilia-Related Distress Questionnaire (HRDq) was developed. To validate the HRDq, adults (≥18 years) with haemophilia were enrolled, reported demographic and clinical information, and completed the HRDq and other questionnaires that measured similar constructs. Analysis included factor analysis and assessment of internal consistency using Cronbach's α, convergent validity using Pearson's correlation coefficient, and discriminant validity by comparing subgroups of patients. Test-retest reliability was assessed using an intraclass correlation coefficient (ICC). RESULTS: Among 130 enrolled participants, 126 (median age=32.7 years) completed the 24 item HRDq in a median time of 5.4 minutes with overall HRDq scores ranging from 2 to 83 (median score=31.5; higher scores indicating higher distress). Assessment of convergent validity demonstrated a strong correlation (ρ>.60) of the HRDq total score with the NCCN Distress Thermometer, Haem-A-QoL total Score, and PROMIS-29 Profile social role domain and a mild to moderate correlation with all other questionnaire domains (.3-.59, p < .05). Distress was higher among those who had less education, were not employed, and were disabled and was not significantly different among those with severe compared with non-severe disease. Assessment of test-retest reliability demonstrated an ICC value of .84 (95% CI .71-.91) for the total score. CONCLUSIONS: The HRDq demonstrates good internal consistency, construct and discriminant validity, and retest reliability with a low responder burden.


Assuntos
Hemofilia A , Adulto , Humanos , Psicometria , Qualidade de Vida , Reprodutibilidade dos Testes , Inquéritos e Questionários
9.
BMC Health Serv Res ; 21(1): 384, 2021 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-33902568

RESUMO

BACKGROUND: Multi-professional obstetric emergencies training is one promising strategy to improve maternity care. Sustaining training programmes following successful implementation remains a challenge. Understanding, and incorporating, key components within the implementation process can embed interventions within healthcare systems, thereby enhancing sustainability. This study aimed to identify key components influencing sustainability of PRactical Obstetric Multi-Professional Training (PROMPT) in the Philippines, a middle-income setting. METHODS: Three hospitals were purposively sampled to represent private, public and teaching hospital settings. Two focus groups, one comprising local trainers and one comprising training participants, were conducted in each hospital using a semi-structured topic guide. Focus groups were audio recorded. Data were analysed using thematic analysis. Three researchers independently coded transcripts to ensure interpretation consistency. RESULTS: Three themes influencing sustainability were identified; attributes of local champions, multi-level organisational involvement and addressing organisational challenges. CONCLUSIONS: These themes, including potential barriers to sustainability, should be considered when designing and implementing training programmes in middle-income settings. When 'scaling-up', local clinicians should be actively involved in selecting influential implementation champions to identify challenges and strategies specific to their organisation. Network meetings could enable shared learning and sustain enthusiasm amongst local training teams. Policy makers should be engaged early, to support funding and align training with national priorities.


Assuntos
Serviços de Saúde Materna , Obstetrícia , Emergências , Feminino , Humanos , Filipinas , Gravidez , Pesquisa Qualitativa
10.
J Dairy Res ; 88(1): 29-32, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33594969

RESUMO

This research communication addressed the hypothesis that late lactation cows offered an oat-grain-based supplement or a high level of α-TOC supplementation at pasture would have improved milk composition and processability. Over a grazing period of 49 d, 48 Holstein Friesian dairy cows were randomly assigned to one of four dietary treatments. The dietary treatments were: control, pasture only (CTRL), pasture + 2.65 kg DM barley-based concentrate + 350 IU α-TOC/kg (BARLO), pasture + 2.65 kg DM oat-based concentrate + 350 IU α-TOC/kg (OATLO) and pasture + 2.65 kg DM oat-based concentrate + 1050 IU α-TOC/kg (OATHI). Within this randomised complete block design experiment cows were blocked on days in milk (DIM) and balanced for parity, milk yield and composition. Rennet coagulation time (RCT) was reduced in milk from cows offered OATHI compared to CTRL cows and OATLO. Concentration of conjugated linoleic acid (CLA) was increased by OATHI compared to OATLO and in OATLO compared to CTRL. Supplementation with OATHI reduced individual saturated fatty acids (SFAs) in milk compared to OATLO. In conclusion, supplementing grazing dairy cows with an oat-based supplement improved total milk CLA concentration compared to pasture only. Offering a high level of α-TOC (2931 IU/d) to dairy cows reduced RCT, individual SFA and increased total CLA concentration of milk compared to a lower α-TOC level (738 IU α-TOC/d).


Assuntos
Bovinos/fisiologia , Grão Comestível , Lactação/fisiologia , Leite/química , alfa-Tocoferol/administração & dosagem , Ração Animal/análise , Animais , Avena , Indústria de Laticínios/métodos , Dieta/veterinária , Suplementos Nutricionais , Ácidos Graxos/análise , Feminino , Hordeum , Ácidos Linoleicos Conjugados , Lolium
11.
Ophthalmology ; 127(1): 38-44, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31522900

RESUMO

PURPOSE: Ophthalmologic telemedicine has the ability to provide eye care for patients remotely, and many countries have used screening tele-ophthalmology programs for several years. One such initiative at the Veterans Affairs (VA) Healthcare System is Technology-based Eye Care Services (TECS). The TECS services are located in primary care clinics and provide basic screening eye care, including vision, refraction, and retinal photography. Eye care providers ("readers") review the clinical data and recommend appropriate follow-up. One of the most common referrals from TECS has been for glaucoma, and this study was powered for glaucoma/glaucoma suspect detection. The current study was undertaken to identify aspects of the protocol that could be refined to enhance accuracy. DESIGN: Prospective comparison between the standard TECS protocol versus a face-to-face (FTF) examination on 256 patients, all of whom had no known history of significant ocular disease. PARTICIPANTS: Patients with no known ocular disease who were scheduled for an in-person eye appointment at the Atlanta VA. Patients underwent screening through the TECS protocol and received an FTF examination on the same day (gold standard). The TECS readers were masked to the results of the FTF examination. MAIN OUTCOME MEASURES: Percent agreement, kappa, sensitivity, and specificity were calculated for the TECS readers' interpretations versus the FTF examination. RESULTS: The TECS readers showed substantial agreement for cataract (κ ≥ 0.71) and diabetic retinopathy (κ ≥ 0.61) and moderate to substantial agreement for glaucoma/glaucoma suspect (κ ≥ 0.52) compared with an FTF examination. Age-related macular degeneration (AMD) showed moderate agreement (κ ≥ 0.34). Percent agreement with the TECS protocol was high (84.3%-98.4%) for each of the disease categories. Overall sensitivity and specificity were ≥75% and ≥55%, respectively, for any diagnosis resulting in referral. Inter-reader and intra-reader agreement was substantial for most diagnoses (κ > 0.61) with percent agreements ranging from 66% to 99%. CONCLUSIONS: Our results indicate that the standard TECS protocol is accurate when compared with an FTF examination for the detection of common eye diseases. The inclusion of additional testing such as OCT could further enhance diagnostic capability.


Assuntos
Catarata/diagnóstico , Atenção à Saúde/normas , Retinopatia Diabética/diagnóstico , Glaucoma/diagnóstico , Degeneração Macular/diagnóstico , Telemedicina/normas , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Hipertensão Ocular/diagnóstico , Exame Físico/normas , Estudos Prospectivos , Encaminhamento e Consulta , Reprodutibilidade dos Testes , Sensibilidade e Especificidade , Veteranos , Acuidade Visual/fisiologia
12.
Ophthalmology ; 127(4): 544-549, 2020 04.
Artigo em Inglês | MEDLINE | ID: mdl-31791664

RESUMO

PURPOSE: Ophthalmologic telemedicine programs help to address the growing demand for eye care and lessen healthcare disparities for patients. One example is Technology-Based Eye Care Services (TECS), implemented in the Veteran Affairs Healthcare System in 2015. Accuracy and quality data for TECS both have been reported, and data suggest that although the TECS examination is comparable with an in-person examination, sensitivity for glaucoma and glaucoma suspect detection is less than that for other diseases, such as macular degeneration. Several articles suggest that OCT can improve disease detection for glaucoma. Therefore, this study was undertaken to test the impact of OCT on the accuracy of the TECS protocol. This article reports the data from part II of the TECS Compare trial; results from part I are discussed in a previous article. DESIGN: Prospective comparison between the TECS protocol with OCT versus a face-to-face (FTF) examination for 256 patients. PARTICIPANTS: An eligible patient was defined as a patient with no known ocular disease who desired a routine eye examination. METHODS: Patient underwent the TECS protocol workup and OCT nerve, OCT macula, and FTF examination on the same day. MAIN OUTCOME MEASURES: Percent agreement, κ values, sensitivity, and specificity were calculated for nonexpert readers after OCT interpretation of the TECS protocol using the FTF examination as the clinical gold standard. RESULTS: OCT did not improve the diagnostic accuracy of the TECS protocol when compared with an FTF examination. In most cases, OCT had no impact, and in the case of reader 2, OCT actually reduced the κ value from moderate agreement to agreement equal to chance while lowering the percent agreement by 10%. OCT also did not impact inter- or intrareader variability parameters. CONCLUSIONS: In this study, OCT did not seem to improve the accuracy of glaucoma or retinal disease detection when added to the standard TECS protocol. In one case, OCT worsened the agreement of the reader compared with the FTF. Further study is necessary to confirm these findings, and results may change if the readers are glaucoma or retina specialists instead of nonexpert OCT readers, comprehensive and anterior segment specialists.


Assuntos
Catarata/diagnóstico , Atenção à Saúde/normas , Retinopatia Diabética/diagnóstico , Glaucoma/diagnóstico , Degeneração Macular/diagnóstico , Telemedicina/normas , Tomografia de Coerência Óptica/normas , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Fibras Nervosas/patologia , Hipertensão Ocular/diagnóstico , Estudos Prospectivos , Encaminhamento e Consulta , Reprodutibilidade dos Testes , Células Ganglionares da Retina/patologia , Sensibilidade e Especificidade , Avaliação da Tecnologia Biomédica
13.
Qual Life Res ; 29(12): 3343-3351, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32794088

RESUMO

PURPOSE: To determine the usefulness of cumulative and additive risk models in predicting the healthy-related quality of life (HRQOL) of caregivers of youth with chronic gastrointestinal conditions. METHODS: 203 caregivers (82.8% mothers; 77.3% white) of youth (M = 11.27 years; 44.3% female; 78.8% White) completed self-report questionnaires focused on potential environmental, child health, and family risk factors that could impact caregiver HRQOL. Cumulative risk models, evaluating overall combined risk level, as well as an additive risk model, exploring individual risk variables, were evaluated. RESULTS: Higher levels of cumulative risk were associated with poorer caregiver HRQOL after controlling for child and caregiver sex. A linear cumulative risk model was a better fit than a quadratic cumulative risk model for predicting caregiver HRQOL, while an additive model identified child HRQOL, child pain interference and family functioning as the most individually impactful risk variables. CONCLUSION: This study illustrates the usefulness of both additive and cumulative risk approaches in identifying caregivers at risk for poor HRQOL. Provision of appropriate referrals and interventions based on the caregiver's risk factors can help protect caregiver quality of life and, in turn, benefit the care children with chronic conditions receive at home.


Assuntos
Cuidadores/psicologia , Gastroenteropatias/psicologia , Qualidade de Vida/psicologia , Criança , Doença Crônica , Feminino , Humanos , Masculino , Inquéritos e Questionários
15.
Haemophilia ; 25(6): 988-995, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31577383

RESUMO

INTRODUCTION: Distress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these populations, disease-specific distress is associated with health outcomes. Haemophilia-related distress is less understood. AIM: To identify qualitative features of haemophilia-related distress among affected adults to ultimately inform the creation of a measurement tool. METHODS: Adults with haemophilia A or B associated with a large haemophilia treatment centre in the south-eastern U.S. were recruited to participate in this qualitative study. Fifteen participants completed semi-structured telephone interviews. Interviews lasted 1-2 hours and explored experiences of distress related to various aspects of haemophilia. Interviews were audio taped, transcribed and coded using NVIVO, software for organizing, managing and analysing qualitative data. Coding was deductive and inductive, and the analysis was thematic. RESULTS: Haemophilia-related distress was broadly related to feelings of isolation and vulnerability which incorporated health system factors, physical functioning, caretaker roles and psychological considerations. Specific features associated with haemophilia-related distress included lack of trust in the knowledge of haemophilia and care provided by staff in community healthcare settings, concerns about the future such as health insurance access and ageing/disability, long-standing feelings of being different from others and feeling like an outsider, treatment burdens and fear of acute bleeds. Protective factors included supportive relationships with family, friends and haemophilia care teams through which participants received practical and emotional support. CONCLUSION: Features of haemophilia-related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia.


Assuntos
Hemofilia A/psicologia , Hemofilia B/psicologia , Estresse Psicológico/epidemiologia , Adolescente , Adulto , Estudos de Coortes , Feminino , Hemofilia A/complicações , Hemofilia B/complicações , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Estresse Psicológico/complicações , Adulto Jovem
16.
Alcohol Clin Exp Res ; 43(8): 1727-1733, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31166027

RESUMO

BACKGROUND: This study examined the relationship between prenatal exposure to alcohol, manifested through fetal alcohol syndrome (FAS) and pFAS, and hypertension in children and adolescents. METHODS: This study was designed to analyze the association between fetal alcohol spectrum disorders (FASD) Status and hypertension status. FAS/pFAS-diagnosed respondents (n = 125) were collected from a FASD Clinical database in Atlanta, Georgia. Non-FAS/pFAS respondents (n = 500) were taken from the National Health and Nutrition Examination Survey (NHANES). Chi-square analyses were used to examine the extent to which FASD status, sex, race/ethnicity, medication use, and obesity status each related to hypertension status. A logistic regression was performed analyzing the relationship between FASD status (y/n: independent) and hypertension status (y/n: dependent) while controlling for age, sex, race/ethnicity, medication use, and obesity status. RESULTS: Univariate relationships between hypertension status and FASD status (OR = 8.46, p < 0.001), medication use (OR = 3.25, p < 0.001), and obesity status (OR = 3.03, p = 0.02) proved to be statistically significant (p < 0.05). FASD status significantly predicted hypertension status (ß = 2.31, OR = 10.06, p < 0.001) after accounting for age, sex, race/ethnicity, medication use, and obesity status. CONCLUSIONS: The major findings of this study suggest a significant relationship between FASD and hypertension in youth. Race/ethnicity and obesity also proved important in predicting hypertensive blood pressure readings independent of FASD diagnosis. Further research is needed to isolate prenatal alcohol exposure (PAE) as a factor promoting increased hypertension and to assess the risk for hypertension in alcohol-affected adults.


Assuntos
Consumo de Bebidas Alcoólicas/efeitos adversos , Doenças Cardiovasculares/epidemiologia , Transtornos do Espectro Alcoólico Fetal/epidemiologia , Hipertensão/epidemiologia , Adolescente , Fatores Etários , Criança , Comorbidade , Bases de Dados Factuais/estatística & dados numéricos , Feminino , Georgia/epidemiologia , Humanos , Masculino , Inquéritos Nutricionais/estatística & dados numéricos , Gravidez , Efeitos Tardios da Exposição Pré-Natal , Fatores de Risco , Fatores Sexuais
17.
J Pediatr Gastroenterol Nutr ; 68(3): 301-305, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30499883

RESUMO

Youth with inflammatory bowel disease (IBD) demonstrate deficits in lean mass (LM) placing them at increased risk for future health problems, including reduction of bone mass and impaired bone architecture. Research suggests that deficits in LM are multifactorial, including influences from the disease and its treatment, and health behaviors such as diet and physical activity. Based on a systematic literature review examining factors related to LM deficits in IBD, this article presents a conceptual model to explain the development of LM in youth with IBD. The model considers predictors of LM across 4 domains: demographic; medical; diet; and physical activity. Much existing research is cross-sectional, but suggests multiple factors work together to promote or inhibit LM accrual in youth with IBD. The conceptual model, developed based on empirical findings to date, can be used to understand and further elucidate the process through which LM is developed and maintained, to inform the development of empirically supported clinical interventions, and to guide future research objectives and priorities.


Assuntos
Composição Corporal , Colite Ulcerativa/fisiopatologia , Doença de Crohn/fisiopatologia , Adolescente , Índice de Massa Corporal , Criança , Colite Ulcerativa/complicações , Doença de Crohn/complicações , Progressão da Doença , Ingestão de Energia/fisiologia , Exercício Físico/fisiologia , Feminino , Humanos , Masculino , Desnutrição/etiologia , Fatores Sexuais
18.
Behav Sleep Med ; 17(3): 238-245, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-28557581

RESUMO

OBJECTIVE/BACKGROUND: Improvement is sought for youth with obstructive sleep apnea syndrome (OSAS) who have poor quality of life (QoL), which resolves somewhat following treatment. One mitigating factor in improved QoL following treatment may be adherence to the CPAP protocol, which presents a barrier to most youth. This study explored relations between CPAP adherence and QoL in youth with OSAS. PARTICIPANTS: We recruited 42 youth-caregiver dyads in which youth between the ages of 8 and 16 years were diagnosed with OSAS and required CPAP use as part of their treatment plan. METHODS: Following diagnosis of OSAS requiring treatment with CPAP therapy, caregivers completed baseline measures of OSAS-specific QoL. The OSAS-specific QoL domains assessed included sleep disturbance, physical symptoms, emotional distress, daytime function, and caregiver concern. Families received routine CPAP care for three months, after which caregivers again completed measures of OSAS-specific QoL. Adherence data were collected from smartcards within the CPAP machine after three months of treatment. RESULTS: Fifteen youth were adherent to CPAP therapy and 10 were not adherent. CPAP-adherent youth demonstrated significant changes in two domains of OSAS-specific QoL when compared to nonadherent youth: decreased sleep disturbance and decreased caregiver concern. CONCLUSIONS: CPAP adherence appears to be associated with positive changes in OSAS-specific QoL domains. It will be important for future research and clinical work to examine strategies for improving CPAP adherence in youth with OSAS.


Assuntos
Pressão Positiva Contínua nas Vias Aéreas/métodos , Qualidade de Vida/psicologia , Apneia Obstrutiva do Sono/psicologia , Apneia Obstrutiva do Sono/terapia , Adolescente , Criança , Pressão Positiva Contínua nas Vias Aéreas/psicologia , Feminino , Humanos , Masculino , Inquéritos e Questionários
19.
J Pediatr Psychol ; 43(3): 331-341, 2018 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-29048495

RESUMO

Objective: To determine whether the experience of persistent epigastric pain is associated with sleep disturbances in children with eosinophilic esophagitis (EoE). We hypothesized that children with EoE and persistent epigastric pain would (1) self-report greater current and worst pain severity, and (2) experience more disturbed sleep on objective and subjective measures in comparison with children with EoE but no persistent pain and healthy children. Methods: Fifty children with EoE were recruited for this cross-sectional study, of which 24 (48%) reported experiencing persistent epigastric pain. The remaining 26 (52%) children with EoE denied experiencing persistent pain. An additional 25 healthy children without EoE or persistent pain were included. All children provided severity ratings of current pain and worst pain experienced over the past week. Children then completed 12 consecutive nights of ambulatory sleep monitoring via actigraphy in the home. Caregivers provided information regarding their child's sleep patterns and internalizing symptoms. Results: Children with EoE and persistent pain reported significantly greater severity of current pain (p < .001) and worst pain over the past week (p < .001) compared with EoE without persistent pain and healthy children. Compared with the other groups, children with EoE and persistent pain also demonstrated greater actigraphic sleep disturbances, lower sleep efficiency (p = .004) and greater wake after sleep onset (p = .034). Conclusions: This study provides novel evidence that a significant proportion of children with EoE experience persistent symptoms of epigastric pain. Persistent pain was associated with significant sleep disturbances in children with EoE.


Assuntos
Dor Abdominal/fisiopatologia , Dor Crônica/fisiopatologia , Esofagite Eosinofílica/fisiopatologia , Transtornos do Sono-Vigília/fisiopatologia , Dor Abdominal/etiologia , Criança , Pré-Escolar , Dor Crônica/etiologia , Estudos Transversais , Esofagite Eosinofílica/complicações , Feminino , Humanos , Masculino , Transtornos do Sono-Vigília/etiologia
20.
J Pediatr Psychol ; 43(4): 464-471, 2018 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-29048518

RESUMO

Objective: To evaluate relations between health-related quality of life (HRQoL) and clinical symptom presentation in youth with eosinophilic esophagitis (EoE). We hypothesized that presence of dysphagia, reflux, nausea/vomiting, and epigastric pain would be related to poorer HRQoL. In predictive models, it was hypothesized that dysphagia, reflux, nausea/vomiting, and epigastric pain would each significantly and uniquely predict poorer HRQoL. Methods: This cross-sectional, two-study design included 91 dyads comprised children with EoE and their respective caregivers across two tertiary children's hospitals, Site 1 in the Midwest (N = 47) and Site 2 in the Deep South (N = 44). Youth and their caregivers both completed questionnaires addressing HRQoL and EoE symptoms during clinic visits. Results: Per youth self-report, epigastric pain was found to be a significant predictor of poor physical and psychosocial HRQoL. Per caregiver-proxy reports, epigastric pain was found to be a significant predictor of poor physical HRQoL. Conclusions: The clinical symptoms of EoE, specifically epigastric pain, were found to be predictive of the youth's HRQoL. Targeted interventions to help youth with EoE better manage their specific symptom experiences could ultimately improve HRQoL.


Assuntos
Dor Abdominal/fisiopatologia , Esofagite Eosinofílica/fisiopatologia , Qualidade de Vida , Dor Abdominal/etiologia , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Esofagite Eosinofílica/complicações , Feminino , Humanos , Masculino
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA