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1.
JMIR Hum Factors ; 11: e51789, 2024 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-38781581

RESUMO

BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida , Pesquisa Qualitativa , Humanos , Cuidados Paliativos na Terminalidade da Vida/métodos , Feminino , Masculino , Pessoa de Meia-Idade , Avaliação de Sintomas/métodos , Adulto , Cuidadores/psicologia , Qualidade de Vida
2.
Trials ; 25(1): 194, 2024 Mar 19.
Artigo em Inglês | MEDLINE | ID: mdl-38500191

RESUMO

BACKGROUND: Pulmonary rehabilitation (PR) is a programme of exercise and education and the most effective treatment for the symptoms and disability associated with chronic obstructive pulmonary disease. However, the benefits of PR are limited by poor uptake and completion. This trial will determine whether using trained volunteer lay health workers, called "PR buddies," improves uptake and completion of PR and is cost-effective. This trial protocol outlines the methods for evaluating effectiveness, cost-effectiveness, and acceptability. METHODS: The IMPROVE trial is a pragmatic, open, cluster randomised controlled trial planned in 38 PR services across England and Wales. PR services will be randomised to either intervention arm-offering support from PR buddies to patients with chronic obstructive pulmonary disease-or to usual care as the control arm. PR staff in trial sites randomised to the intervention arm will receive training in recruiting and training PR buddies. They will deliver training to volunteers, recruited from among people who have recently completed PR in their service. The 3-day PR-buddy training programme covers communication skills, confidentiality, boundaries of the PR-buddy role and behaviour change techniques to help patients overcome obstacles to attending PR. An internal pilot will test the implementation of the trial in eight sites (four intervention sites and four in control arm). The primary outcome of the trial is the uptake and completion of PR. A process evaluation will investigate the acceptability of the intervention to patients, PR staff and the volunteer PR buddies, and intervention fidelity. We will also conduct a cost-effectiveness analysis. DISCUSSION: Improving outcomes for chronic obstructive pulmonary disease and access to PR are priorities for the UK National Health Service (NHS) in its long-term plan. The trial hypothesis is that volunteer PR buddies, who are recruited and trained by local PR teams, are an effective and cost-effective way to improve the uptake and completion rates of PR. The trial is pragmatic, since it will test whether the intervention can be incorporated into NHS PR services. Information obtained in this trial may be used to influence policy on the use of PR buddies in PR and other similar services in the NHS. TRIAL REGISTRATION: ISRCTN12658458. Registered on 23/01/2023.


Assuntos
Doença Pulmonar Obstrutiva Crônica , Medicina Estatal , Humanos , Análise Custo-Benefício , Inglaterra , Exercício Físico , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Resultado do Tratamento , Ensaios Clínicos Pragmáticos como Assunto
3.
J Palliat Med ; 27(5): 614-621, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38271546

RESUMO

Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. Methods: The purpose of this secondary analysis of data collected from a U.S.-based cluster crossover randomized trial was to evaluate whether caregiver-centered communication (Caregiver-Centered Communication Questionnaire) is associated with a caregiver's perceptions of involvement in care (Perceived Involved in Care Scale). A block-wise approach was used to estimate linear models, which were created using total scores and subscale scores. Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well.


Assuntos
Cuidadores , Comunicação , Cuidados Paliativos na Terminalidade da Vida , Humanos , Cuidadores/psicologia , Masculino , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Pessoa de Meia-Idade , Idoso , Inquéritos e Questionários , Estudos Cross-Over , Estados Unidos , Família/psicologia , Adulto , Relações Profissional-Família , Idoso de 80 Anos ou mais
4.
Health Technol Assess ; 28(1): 1-129, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38229579

RESUMO

Background: People with chronic obstructive pulmonary disease have high levels of anxiety and depression, which is associated with increased morbidity and poor uptake of effective treatments, such as pulmonary rehabilitation. Cognitive-behavioural therapy improves mental health of people with long-term conditions and could potentially increase uptake of pulmonary rehabilitation, enabling synergies that could enhance the mental health of people with chronic obstructive pulmonary disease. Aim: Our aim was to develop and evaluate the clinical effectiveness and cost effectiveness of a tailored cognitive-behavioural approach intervention, which links into, and optimises the benefits of, routine pulmonary rehabilitation. Design: We carried out a pragmatic multicentre randomised controlled trial using a 1.25 : 1 ratio (intervention : control) with a parallel process evaluation, including assessment of fidelity. Setting: Twelve NHS trusts and five Clinical Commissioning Groups in England were recruited into the study. The intervention was delivered in participant's own home or at a local NHS facility, and by telephone. Participants: Between July 2017 and March 2020 we recruited adults with moderate/very severe chronic obstructive pulmonary disease and mild/moderate anxiety and/or depression, meeting eligibility criteria for assessment for pulmonary rehabilitation. Carers of participants were invited to participate. Intervention: The cognitive-behavioural approach intervention (i.e. six to eight 40- to 60-minute sessions plus telephone support throughout pulmonary rehabilitation) was delivered by 31 trained respiratory healthcare professionals to participants prior to commencing pulmonary rehabilitation. Usual care included routine pulmonary rehabilitation referral. Main outcome measures: Co-primary outcomes were Hospital Anxiety and Depression Scale - anxiety and Hospital Anxiety and Depression Scale - depression at 6 months post randomisation. Secondary outcomes at 6 and 12 months included health-related quality of life, smoking status, uptake of pulmonary rehabilitation and healthcare use. Results: We analysed results from 423 randomised participants (intervention, n = 242; control, n = 181). Forty-three carers participated. Follow-up at 6 and 12 months was 93% and 82%, respectively. Despite good fidelity for intervention delivery, mean between-group differences in Hospital Anxiety and Depression Scale at 6 months ruled out clinically important effects (Hospital Anxiety and Depression Scale - anxiety mean difference -0.60, 95% confidence interval -1.40 to 0.21; Hospital Anxiety and Depression Scale - depression mean difference -0.66, 95% confidence interval -1.39 to 0.07), with similar results at 12 months. There were no between-group differences in any of the secondary outcomes. Sensitivity analyses did not alter these conclusions. More adverse events were reported for intervention participants than for control participants, but none related to the trial. The intervention did not generate quality-of-life improvements to justify the additional cost (adjusted mean difference £770.24, 95% confidence interval -£27.91 to £1568.39) to the NHS. The intervention was well received and many participants described positive affects on their quality of life. Facilitators highlighted the complexity of participants' lives and considered the intervention to be of potential valuable; however, the intervention would be difficult to integrate within routine clinical services. Our well-powered trial delivered a theoretically designed intervention with good fidelity. The respiratory-experienced facilitators were trained to deliver a low-intensity cognitive-behavioural approach intervention, but high-intensity cognitive-behavioural therapy might have been more effective. Our broad inclusion criteria specified objectively assessed anxiety and/or depression, but participants were likely to favour talking therapies. Randomisation was concealed and blinding of outcome assessment was breached in only 15 participants. Conclusions: The tailored cognitive-behavioural approach intervention delivered with fidelity by trained respiratory healthcare professionals to people with chronic obstructive pulmonary disease was neither clinically effective nor cost-effective. Alternative approaches that are integrated with routine long-term condition care are needed to address the unmet, complex clinical and psychosocial needs of this group of patients. Trial registration: This trial is registered as ISRCTN59537391. Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 13/146/02) and is published in full in Health Technology Assessment; Vol. 28, No. 1. See the NIHR Funding and Awards website for further award information.


People with long-standing lung problems, such as chronic obstructive pulmonary disease, often also have anxiety and depression, which further reduces their quality of life. Two existing treatments could help. Pulmonary rehabilitation (a programme of exercise and education) improves both the physical and mental health of people with chronic obstructive pulmonary disease. Cognitive­behavioural therapy (a talking therapy) may reduce anxiety and depression. The TANDEM [Tailored intervention for Anxiety and Depression Management in chronic obstructive pulmonary disease (COPD)] intervention linked these two treatments by providing talking therapy based on cognitive­behavioural therapy during the waiting time following referral for pulmonary rehabilitation. The TANDEM treatment was delivered by respiratory healthcare professionals (e.g. nurses or physiotherapists) trained to deliver the talking therapy in six to eight weekly sessions. The sessions were conducted in the participant's home (or another convenient location), with brief telephone support during the pulmonary rehabilitation. Of 423 participants recruited to the study, 242 participants received TANDEM talking therapy and 181 participants received usual care (including a referral to pulmonary rehabilitation). We measured mental health, quality of life, social life, attendance at pulmonary rehabilitation and healthcare use in both groups at 6 and 12 months. Forty-three carers joined the study and we assessed their mental well-being. We interviewed patients, carers and health professionals to find out their views and experience of the TANDEM treatment. We also examined whether or not the TANDEM treatment was good value for money. The TANDEM treatment did not improve the mental or the physical health of people with chronic obstructive pulmonary disease. In addition, the TANDEM treatment cost the NHS an extra £770 per patient, which was not good value for money. The TANDEM treatment was well received, and many participants told us how it had helped them. Heath-care professionals noted how participants did not just have chronic obstructive pulmonary disease, but were coping with many physical, mental and social problems. The TANDEM intervention was not effective and, therefore, other strategies will be needed to help people with chronic obstructive pulmonary disease and mental health problems live with their condition.


Assuntos
Depressão , Doença Pulmonar Obstrutiva Crônica , Adulto , Humanos , Depressão/terapia , Qualidade de Vida , Intervenção Psicossocial , Ansiedade/terapia , Doença Pulmonar Obstrutiva Crônica/terapia , Análise Custo-Benefício
6.
Eur J Pain ; 2024 Jan 23.
Artigo em Inglês | MEDLINE | ID: mdl-38260960

RESUMO

BACKGROUND: The health of the gut microbiome is now recognized to be an important component of the gut-brain axis which itself appears to be implicated in pain perception. Antibiotics are known to create dysbiosis in the microbiome, so whether fibromyalgia is more commonly diagnosed after antibiotic prescriptions provides a means of exploring the role of the microbiome in the experience of chronic pain. METHODS: A case-control study was carried out using electronic health records collected in the UK's Clinical Practice Research Datalink (CPRD), a comprehensive database of primary care consultations. For each case of diagnosed fibromyalgia, three controls were identified and matched by age, gender and GP practice. The exposure variable was the number and timing of antibiotic prescriptions over previous years. The analysis involved adjusting for a wide range of co-variates that might be possible confounders. RESULTS: A total of 44,674 cases of fibromyalgia were identified together with 133,513 controls. After adjusting for co-variates, it was found that both the total number of prescriptions and their timing was associated with an FM diagnosis. For example, the quartile with the highest number of prescriptions and that with the longest exposure had a greater than three-fold increase in FM diagnoses (number of prescriptions: odds ratio 3.92; 95% CIs: 3.71-4.13; exposure odds ratio 3.28; CIs: 3.13-3.43). Some antibiotics (such as tetracyclines and metronidazole) seemed to confer greater risk than others. CONCLUSIONS: The results lend support for prior antibiotics being an important risk factor for a diagnosis of FM. SIGNIFICANCE: This study shows an association between the volume as well as timing of prior antibiotic prescriptions and of a subsequent diagnosis of fibromyalgia in primary care.

7.
Lancet ; 402 Suppl 1: S40, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37997082

RESUMO

BACKGROUND: Interventions with community health workers, trained to provide basic medical education and holistic support, have been used to enhance type 2 diabetes outcomes in various settings. Evidence of their effectiveness is poor because of variations in intervention design and duration. We did a systematic review of randomised trials evaluating the effectiveness of community health worker interventions integrated into conventional care to improve glycaemic control in adults with diabetes. METHODS: In this systematic review and meta-analysis, we included randomised trials of community health worker interventions of at least-12 months' duration in adults with type 2 diabetes that compared HbA1c levels with usual care. We searched Ovid MEDLINE, the Cochrane Central Register of Controlled Trials, CINAHL and the Web of Science Core Collection for studies published in English between Jan 1, 2000, and March 1, 2023, for studies containing "community health worker" or "lay health worker", and "type 2 diabetes". We extracted both qualitative and quantitative data to assimilate community health worker intervention characteristics. We did a meta-analysis comparing changes in HbA1c levels from baseline between intervention groups and usual care groups. To be included in the meta-analysis, studies had to have HbA1c values at baseline and after 12 months and a patient dropout rate of less than 25% at 12 months follow-up. The main outcome was the mean weighted difference of % change in HbA1c after at least 12 months, assessed using Revman, the inverse variance-weighted average model (IVW). Quality was assessed using the Cochrane Rob2 tool. FINDINGS: Seven of 86 retrieved studies were eligible for inclusion; six studies were conducted in the USA and one study in Indigenous Australia. Participants in all studies were recruited from Latino, African American and Indigenous Australian ethnic minority groups. The meta-analysis of six studies including 1280 participants (mean age 52·6 years [SD 3·68]; 832 [65%] female and 448 [35%] male) showed a significant improvement in HbA1c level at 12 months follow-up, with a mean weighted difference of 0·5% (95% CI 0·31-0·68) in the community health worker intervention group (p<0·0001), that reached the generally accepted minimal clinically important difference (≥0·5%). Outcome heterogeneity was low. INTERPRETATION: Community health worker interventions showed a significant reduction in HbA1c level adjunct to usual care, but caution must be taken given the point effect estimate is only just the MCID, and the true effect could be smaller. Given the current resource constraints faced by primary care, community health worker interventions could be innovative in informing the primary and secondary management of diabetes care in UK practice. A cost-effectiveness analysis of these interventions is required before implementation in routine diabetes care can be recommended. FUNDING: None.


Assuntos
Diabetes Mellitus Tipo 2 , Adulto , Masculino , Feminino , Humanos , Pessoa de Meia-Idade , Diabetes Mellitus Tipo 2/terapia , Agentes Comunitários de Saúde , Etnicidade , Controle Glicêmico , Grupos Minoritários , Austrália
8.
Arch Dis Child ; 109(1): 46-51, 2023 12 14.
Artigo em Inglês | MEDLINE | ID: mdl-37903632

RESUMO

OBJECTIVE: To compare use of healthcare services and reasons for attendance by children and young people (CYP) with attention-deficit/hyperactivity disorder (ADHD) versus non-ADHD controls. DESIGN: Population-based matched case-control study. SETTING: English primary care electronic health records with linked hospital records from the Clinical Practice Research Datalink, 1998-2015. PARTICIPANTS: 8127 CYP with an ADHD diagnosis aged 4-17 years at the time of diagnosis and 40 136 non-ADHD controls matched by age, sex and general practitioner (GP) practice. MAIN OUTCOME MEASURES: Medical diagnoses, prescriptions, hospital admissions and hospital procedures in the 2 years before diagnosis (or the index date for controls). RESULTS: CYP with ADHD attended healthcare services twice as often as controls (rate ratios: GP: 2.0, 95% CI=2.0, 2.1; hospital 1.8, 95% CI=1.8, 1.9). CYP with ADHD attended their GP, received prescriptions and were admitted to hospital for a wide range of reasons. The strongest association for GP attendances, comparing CYP with versus without ADHD, was for 'mental and behavioural disorders' (OR=25.2, 95% CI=23.3, 27.2). Common reasons for GP attendance included eye, ear, nose, throat, oral (OR=1.5, 95% CI=1.4, 1.5) and conditions such as asthma (OR=1.3, 95% CI=1.3, 1.4) or eczema (OR=1.2, 95% CI=1.0, 1.3). CONCLUSIONS: Two years before diagnosis, CYP with ADHD attended healthcare services twice as often as CYP without. CYP with ADHD had increased rates of physical conditions, such as asthma and eczema. These contacts may be an opportunity for earlier recognition and diagnosis of ADHD.


Assuntos
Asma , Transtorno do Deficit de Atenção com Hiperatividade , Eczema , Criança , Humanos , Adolescente , Transtorno do Deficit de Atenção com Hiperatividade/diagnóstico , Transtorno do Deficit de Atenção com Hiperatividade/epidemiologia , Transtorno do Deficit de Atenção com Hiperatividade/terapia , Estudos de Casos e Controles , Atenção à Saúde
9.
Eur Respir J ; 62(5)2023 11.
Artigo em Inglês | MEDLINE | ID: mdl-37620042

RESUMO

BACKGROUND: The TANDEM multicentre, pragmatic, randomised controlled trial evaluated whether a tailored psychological intervention based on a cognitive behavioural approach for people with COPD and symptoms of anxiety and/or depression improved anxiety or depression compared with usual care (control). METHODS: People with COPD and moderate to very severe airways obstruction and Hospital Anxiety and Depression Scale subscale scores indicating mild to moderate anxiety (HADS-A) and/or depression (HADS-D) were randomised 1.25:1 (242 intervention and 181 control). Respiratory health professionals delivered the intervention face-to-face over 6-8 weeks. Co-primary outcomes were HADS-A and HADS-D measured 6 months post-randomisation. Secondary outcomes at 6 and 12 months included: HADS-A and HADS-D (12 months), Beck Depression Inventory II, Beck Anxiety Inventory, St George's Respiratory Questionnaire, social engagement, the EuroQol instrument five-level version (EQ-5D-5L), smoking status, completion of pulmonary rehabilitation, and health and social care resource use. RESULTS: The intervention did not improve anxiety (HADS-A mean difference -0.60, 95% CI -1.40-0.21) or depression (HADS-D mean difference -0.66, 95% CI -1.39-0.07) at 6 months. The intervention did not improve any secondary outcomes at either time-point, nor did it influence completion of pulmonary rehabilitation or healthcare resource use. Deaths in the intervention arm (13/242; 5%) exceeded those in the control arm (3/181; 2%), but none were associated with the intervention. Health economic analysis found the intervention highly unlikely to be cost-effective. CONCLUSION: This trial has shown, beyond reasonable doubt, that this cognitive behavioural intervention delivered by trained and supervised respiratory health professionals does not improve psychological comorbidity in people with advanced COPD and depression or anxiety.


Assuntos
Depressão , Doença Pulmonar Obstrutiva Crônica , Humanos , Depressão/terapia , Intervenção Psicossocial , Ansiedade/terapia , Transtornos de Ansiedade , Doença Pulmonar Obstrutiva Crônica/complicações , Doença Pulmonar Obstrutiva Crônica/terapia , Qualidade de Vida
10.
Am J Hosp Palliat Care ; : 10499091231194359, 2023 Aug 03.
Artigo em Inglês | MEDLINE | ID: mdl-37537930

RESUMO

Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms.

11.
JAMA Netw Open ; 6(4): e238795, 2023 04 03.
Artigo em Inglês | MEDLINE | ID: mdl-37071421

RESUMO

Importance: Goal-concordant care is an ongoing challenge in hospital settings. Identification of high mortality risk within 30 days may call attention to the need to have serious illness conversations, including the documentation of patient goals of care. Objective: To examine goals of care discussions (GOCDs) in a community hospital setting with patients identified as having a high risk of mortality by a machine learning mortality prediction algorithm. Design, Setting, and Participants: This cohort study took place at community hospitals within 1 health care system. Participants included adult patients with a high risk of 30-day mortality who were admitted to 1 of 4 hospitals between January 2 and July 15, 2021. Patient encounters of inpatients in the intervention hospital where physicians were notified of the computed high risk mortality score were compared with patient encounters of inpatients in 3 community hospitals without the intervention (ie, matched control). Intervention: Physicians of patients with a high risk of mortality within 30 days received notification and were encouraged to arrange for GOCDs. Main Outcomes and Measures: The primary outcome was the percentage change of documented GOCDs prior to discharge. Propensity-score matching was completed on a preintervention and postintervention period using age, sex, race, COVID-19 status, and machine learning-predicted mortality risk scores. A difference-in-difference analysis validated the results. Results: Overall, 537 patients were included in this study with 201 in the preintervention period (94 in the intervention group; 104 in the control group) and 336 patients in the postintervention period. The intervention and control groups included 168 patients per group and were well-balanced in age (mean [SD], 79.3 [9.60] vs 79.6 [9.21] years; standardized mean difference [SMD], 0.03), sex (female, 85 [51%] vs 85 [51%]; SMD, 0), race (White patients, 145 [86%] vs 144 [86%]; SMD 0.006), and Charlson comorbidities (median [range], 8.00 [2.00-15.0] vs 9.00 [2.00 to 19.0]; SMD, 0.34). Patients in the intervention group from preintervention to postintervention period were associated with being 5 times more likely to have documented GOCDs (OR, 5.11 [95% CI, 1.93 to 13.42]; P = .001) by discharge compared with matched controls, and GOCD occurred significantly earlier in the hospitalization in the intervention patients as compared with matched controls (median, 4 [95% CI, 3 to 6] days vs 16 [95% CI, 15 to not applicable] days; P < .001). Similar findings were observed for Black patient and White patient subgroups. Conclusions and Relevance: In this cohort study, patients whose physicians had knowledge of high-risk predictions from machine learning mortality algorithms were associated with being 5 times more likely to have documented GOCDs than matched controls. Additional external validation is needed to determine if similar interventions would be helpful at other institutions.


Assuntos
COVID-19 , Adulto , Humanos , Feminino , Criança , Estudos de Coortes , Hospitalização , Hospitais Comunitários , Aprendizado de Máquina
12.
Artigo em Inglês | MEDLINE | ID: mdl-36863862

RESUMO

OBJECTIVES: The purpose of this study was to test an intervention named ACCESS (Access for Cancer Caregivers to Education and Support for Shared Decision Making). The intervention uses private Facebook support groups to support and educate caregivers, preparing them to participate in shared decision-making during web-based hospice care plan meetings. The overall hypothesis behind the study was that family caregivers of hospice patients with cancer would experience lower anxiety and depression as a result of participating in an online Facebook support group and shared decision-making with hospice staff in a web-based care plan meeting. METHODS: This is a cluster cross-over randomised three-arm clinical trial where one group participated in both the Facebook group and the care plan team meeting. A second group participated only in the Facebook group and the third group was a control group and received usual hospice care. RESULTS: There were 489 family caregivers who participated in the trial. There were no statistically significant differences between the ACCESS intervention group and the Facebook only or the control group on any outcome. The participants in the Facebook only group, however, experienced a statistically significant decrease in depression compared with the enhanced usual care group. CONCLUSIONS: While the ACCESS intervention group did not experience significant improvement in outcomes, caregivers assigned to the Facebook only group showed significant improvement in depression scores from baseline as compared with the enhanced usual care control group. Further research is needed to understand the mechanisms of action leading to reduced depression.

14.
J Gen Intern Med ; 38(2): 277-284, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35319086

RESUMO

BACKGROUND: The per diem financial structure of hospice care may lead agencies to consider patient-level factors when weighing admissions. OBJECTIVE: To investigate if treatment cost, disease complexity, and diagnosis are associated with hospice willingness to accept patients. DESIGN: In this 2019 online survey study, individuals involved in hospice admissions decisions were randomized to view one of six hypothetical patient vignettes: "high-cost, high-complexity," "low-cost, high-complexity," and "low-cost, low-complexity" within two diseases: heart failure and cystic fibrosis. Vignettes included demographics, prognoses, goals, and medications with costs. Respondents indicated their perceived likelihood of acceptance to their hospice; if likelihood was <100%, respondents were asked the barriers to acceptance. We used bivariate tests to examine associations between demographic, clinical, and organizational factors and likelihood of acceptance. PARTICIPANTS: Individuals involved in hospice admissions decisions MAIN MEASURES: Likelihood of acceptance to hospice care KEY RESULTS: N=495 (76% female, 53% age 45-64). Likelihoods of acceptance in cystic fibrosis were 79.8% (high-cost, high-complexity), 92.4% (low-cost, high-complexity), and 91.5% (low-cost, low-complexity), and in heart failure were 65.9% (high-cost, high-complexity), 87.3% (low-cost, high-complexity), and 96.6% (low-cost, low-complexity). For both heart failure and cystic fibrosis, respondents were less likely to accept the high-cost, high-complexity patient than the low-cost, high-complexity patient (65.9% vs. 87.3%, 79.8% vs. 92.4%, both p<0.001). For heart failure, respondents were less likely to accept the low-cost, high-complexity patient than the low-cost, low-complexity patient (87.3% vs. 96.6%, p=0.004). Treatment cost was the most common barrier for 5 of 6 vignettes. CONCLUSIONS: This study suggests that patients receiving expensive and/or complex treatments for palliation may have difficulty accessing hospice.


Assuntos
Fibrose Cística , Insuficiência Cardíaca , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Custos de Cuidados de Saúde , Insuficiência Cardíaca/terapia
15.
J Psychosoc Oncol ; 41(2): 210-225, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-35930381

RESUMO

BACKGROUND: Family caregivers of cancer patients are very involved in communication with healthcare teams; however, little is known about their experiences. Limited information is known about how the type of cancer patients have impact caregiving experiences. OBJECTIVES: This study seeks to compare the caregiving experience of caregivers of hospice lung cancer patients with hospice caregivers of patients with all other cancer types. METHOD: This study is based on a secondary analysis of data generated from a parent study evaluating a behavioral intervention with caregivers of hospice cancer patients. RESULTS: When comparing caregiving experiences by patient diagnosis, significant differences were found in caregivers of hospice lung cancer demographics and experiences with caregiver-centered communication. Specifically, caregivers of lung cancer patients have significantly more trouble with exchange of information, fostering relationships, and decision making with their hospice team. CONCLUSION: More research is needed to understand the impact of lung cancer on caregiver centered communication and the necessary interventions required to address these issues.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias Pulmonares , Humanos , Cuidadores , Pais , Família
16.
PLoS One ; 17(10): e0276807, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36301976

RESUMO

BACKGROUND: The effect of antibiotics on the human microbiome is now well established, but their indirect effect on the related immune response is less clear. The possible association of Herpes zoster, which involves a reactivation of a previous varicella zoster virus infection, with prior antibiotic exposure might indicate a potential link with the immune response. METHODS: A case-control study was carried out using a clinical database, the UK's Clinical Practice Research Datalink. A total of 163,754 patients with varicella zoster virus infection and 331,559 age/sex matched controls were identified and their antibiotic exposure over the previous 10 years, and longer when data permitted, was identified. Conditional logistic regression was used to identify the association between antibiotic exposure and subsequent infection in terms of volume and timing. RESULTS: The study found an association of antibiotic prescription and subsequent risk of varicella zoster virus infection (adjusted odds ratio of 1.50; 95%CIs: 1.42-1.58). The strongest association was with a first antibiotic over 10 years ago (aOR: 1.92; 95%CIs: 1.88-1.96) which was particularly pronounced in the younger age group of 18 to 50 (aOR 2.77; 95%CIs: 1.95-3.92). CONCLUSIONS: By finding an association between prior antibiotics and Herpes zoster this study has shown that antibiotics may be involved in the reactivation of the varicella zoster virus. That effect, moreover, may be relatively long term. This indirect effect of antibiotics on viruses, possibly mediated through their effect on the microbiome and immune system, merits further study.


Assuntos
Varicela , Herpes Zoster , Humanos , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Criança , Herpesvirus Humano 3 , Estudos de Casos e Controles , Antibacterianos/efeitos adversos
17.
BMJ Open Respir Res ; 9(1)2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-36041773

RESUMO

BACKGROUND: Inhaled corticosteroids (ICS) are frequently prescribed outside guidelines to patients with chronic obstructive pulmonary disease (COPD) with mild/moderate airflow limitation and low exacerbation risk. This primary care trial explored the feasibility of identifying patients with mild/moderate COPD taking ICS, and the acceptability of ICS withdrawal. METHODS: Open feasibility trial. Outcome measures included prevalence of suitable participants, feasibility of their identification, their willingness-to-accept open randomisation to ICS withdrawal or continuation over 6 months follow-up. RESULTS: 392 (13%) of 2967 patients with COPD from 20 practices (209 618 population) identified as eligible for ICS withdrawal by electronic search algorithm. After individual patient record review, 243 (62%) were excluded because of: severe airflow limitation (65, 17%); one or more severe or two or more moderate COPD exacerbations in the previous year (86, 22%); asthma (15, 4%); and severe comorbidities (77, 20%). After exclusion, 149 patients with COPD were invited to participate and 61 agreed to randomisation. At clinical assessment, 10 patients exhibited undocumented airflow reversibility (forced expiratory volume in 1 s (FEV1) reversibility >12% and >200 mL); 2 had suffered two or more undocumented, moderate exacerbations in the previous year; 7 had severe airflow limitation; and 2 had normal spirometry. Finally, 40 were randomised. One patient died and one was lost to follow-up. 18 (45%) of the 38 (10 withdrawal and 8 usual care) exhibited previously undocumented FEV1 variability suggestive of asthma, supported in the withdrawal group by significant associations with elevated fractional exhaled nitric oxide (p=0.04), elevated symptom score (p=0.04), poorer quality of life (p=0.04) and atopic status (p=0.01). CONCLUSIONS: Identifying primary care patients with mild/moderate COPD suitable for ICS withdrawal is feasible but requires real-time verification because of unreliable recording of exacerbations and lung function. Suitable patients accepted randomisation to ICS withdrawal or continuation for the purposes of future studies. Follow-up compliance was high. Nearly 50% of participants with a diagnosis of mild/moderate COPD demonstrated previously undocumented FEV1 variability during follow-up, mandating monitoring for at least 6 months following withdrawal to exclude undiagnosed asthma.


Assuntos
Asma , Doença Pulmonar Obstrutiva Crônica , Administração por Inalação , Corticosteroides/uso terapêutico , Asma/tratamento farmacológico , Estudos de Viabilidade , Humanos , Pulmão , Atenção Primária à Saúde , Doença Pulmonar Obstrutiva Crônica/tratamento farmacológico , Qualidade de Vida
18.
J Soc Work End Life Palliat Care ; 18(2): 146-159, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35282796

RESUMO

Research has demonstrated a lack of support for hospice caregivers and a higher than average level of self-reported anxiety and depression. While online support groups are gaining popularity, few protocols have been published, little research has demonstrated the skills required to facilitate, and virtually no data has explored the clinical outcomes affiliated with participation in such groups. This paper presents the preliminary experience and results of a clinical trial testing the use of online support groups designed to both educate and provide social support to caregivers of hospice cancer patients. A detailed protocol outlines educational strategies, discussion questions, and a blueprint outlining ways to engage participants. A review of field notes completed by the interventionist reveal specific facilitation skills and strategies used to engage participants. Finally, preliminary analysis of 78 participants shows the group is having a statistically significant impact on the caregiver depression.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Neoplasias , Mídias Sociais , Cuidadores , Humanos , Neoplasias/terapia , Literatura de Revisão como Assunto , Grupos de Autoajuda
19.
Med Care ; 60(5): 381-386, 2022 05 01.
Artigo em Inglês | MEDLINE | ID: mdl-35230273

RESUMO

BACKGROUND: The coronavirus disease 2019 (COVID-19) pandemic has challenged the accuracy and racial biases present in traditional mortality scores. An accurate prognostic model that can be applied to hospitalized patients irrespective of race or COVID-19 status may benefit patient care. RESEARCH DESIGN: This cohort study utilized historical and ongoing electronic health record features to develop and validate a deep-learning model applied on the second day of admission predicting a composite outcome of in-hospital mortality, discharge to hospice, or death within 30 days of admission. Model features included patient demographics, diagnoses, procedures, inpatient medications, laboratory values, vital signs, and substance use history. Conventional performance metrics were assessed, and subgroup analysis was performed based on race, COVID-19 status, and intensive care unit admission. SUBJECTS: A total of 35,521 patients hospitalized between April 2020 and October 2020 at a single health care system including a tertiary academic referral center and 9 community hospitals. RESULTS: Of 35,521 patients, including 9831 non-White patients and 2020 COVID-19 patients, 2838 (8.0%) met the composite outcome. Patients who experienced the composite outcome were older (73 vs. 61 y old) with similar sex and race distributions between groups. The model achieved an area under the receiver operating characteristic curve of 0.89 (95% confidence interval: 0.88, 0.91) and an average positive predictive value of 0.46 (0.40, 0.52). Model performance did not differ significantly in White (0.89) and non-White (0.90) subgroups or when grouping by COVID-19 status and intensive care unit admission. CONCLUSION: A deep-learning model using large-volume, structured electronic health record data can effectively predict short-term mortality or hospice outcomes on the second day of admission in the general inpatient population without significant racial bias.


Assuntos
COVID-19 , Hospitais para Doentes Terminais , Algoritmos , Estudos de Coortes , Hospitalização , Humanos , Pacientes Internados , Aprendizado de Máquina , Estudos Retrospectivos , SARS-CoV-2
20.
Artigo em Inglês | MEDLINE | ID: mdl-35210767

RESUMO

BACKGROUND: It has been demonstrated that antibiotic prescribing for Acute Exacerbations of Chronic Obstructive Pulmonary Disease (AECOPD) can be safely reduced in primary care when general practitioners have access to C-reactive protein (CRP) rapid testing. AIM: To investigate the factors associated with post-consultation COPD health status in patients presenting with AECOPD in this setting. DESIGN AND SETTING: A cohort study of patients enrolled in a randomised controlled trial. Patients aged 40+ years with a clinical diagnosis of COPD who presented in primary care across England and Wales with an AECOPD were included. METHODS: Participants were contacted for follow-up at one- and two-weeks by phone and attended the practice four weeks after the index consultation. The outcome of interest was the Clinical COPD Questionnaire (CCQ) score. Multivariable multilevel linear regression models fitted to examine the factors associated with COPD health status in the four-weeks following consultation for an AECOPD. RESULTS: A total of 649 patients were included, with 1947 CCQ total scores analysed. Post-consultation CCQ total scores were significantly higher (worse) in participants with diabetes (adjusted mean difference [AMD]=0.26; 95% confidence interval (CI) 0.08-0.45), obese patients compared to those with normal body mass index (AMD = 0.25, 95% CI 0.07-0.43), and those who were prescribed oral antibiotics in the prior 12 months (AMD = 0.26; 95% CI 0.11-0.41), but only the two latter associations remained after adjusting for other sociodemographic variables. CONCLUSION: COPD health status was worse in the four weeks following primary care consultation for AECOPD in patients with obesity and those prescribed oral antibiotics in the preceding year.


Assuntos
Doença Pulmonar Obstrutiva Crônica , Adulto , Estudos de Coortes , Progressão da Doença , Nível de Saúde , Humanos , Atenção Primária à Saúde , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/tratamento farmacológico , Encaminhamento e Consulta
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