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1.
BMC Health Serv Res ; 19(1): 989, 2019 Dec 23.
Artigo em Inglês | MEDLINE | ID: mdl-31870358

RESUMO

BACKGROUND: Lower-level emotional and psychological difficulties ('distress') in patients with end stage renal disease (ESRD), can lead to reduced quality of life and poor clinical outcomes. National guidelines mandate provision of emotional and psychological support for renal patients yet little is known about the support that patients may require, or the challenges that staff experience in identifying and responding to patient distress. METHODS: Mixed methods study in renal units at four NHS Trusts in the West Midlands, UK involving cross-sectional surveys of ESRD patients and renal unit staff and semi-structured interviews with 46 purposively-sampled patients and 31 renal unit staff. Interviews explored patients' experience of distress and personal coping strategies, staff attitudes towards patient distress and perceptions of their role, responsibility and capacity. RESULTS: Patient distress was widespread (346/1040; 33.3%), and emotional problems were frequently reported. Younger patients, females, those from black and minority ethnic (BME) groups and patients recently initiating dialysis reported particular support needs. Staff recognised the value of supporting distressed patients, yet support often depended on individual staff members' skills and personal approach. Staff reported difficulties with onward referral to formal counselling and psychology services and a lack of immediate access to less formalised options. There was also a substantial training/skills gap whereby many staff reported lacking the confidence to recognise and respond to patient distress. Staff fell broadly into three groups: 'Enthusiasts' who considered identifying and responding to patient distress as integral to their role; 'Equivocators' who thought that managing distress was part of their role, but who lacked skills and confidence to do this effectively, and 'Avoiders' who did not see managing distress as part of their role and actively avoided the issue with patients. CONCLUSIONS: Embedding the value of emotional support provision into renal unit culture is the key to 'normalising' discussions about distress. Immediately accessible, informal support options should be available, and all renal staff should be offered training to proactively identify and reactively manage patient distress. Emotional support for staff is important to ensure that a greater emphasis on managing patient distress is not associated with an increased incidence of staff burnout.


Assuntos
Unidades Hospitalares de Hemodiálise/organização & administração , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Angústia Psicológica , Adaptação Psicológica , Idoso , Atitude do Pessoal de Saúde , Aconselhamento , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cultura Organizacional , Pesquisa Qualitativa , Medicina Estatal , Reino Unido
2.
Health Qual Life Outcomes ; 15(1): 188, 2017 Sep 29.
Artigo em Inglês | MEDLINE | ID: mdl-28962570

RESUMO

OBJECTIVE: To determine the effectiveness of integrated care interventions in improving the Quality of Life (QoL) for patients with chronic conditions. DESIGN: A review of the systematic reviews evidence (umbrella review). DATA SOURCES: Medline, Embase, ASSIA, PsychINFO, HMIC, CINAHL, Cochrane Library (including HTA database), DARE, and Cochrane Database of Systematic Reviews), EPPI-Centre, TRIP and Health Economics Evaluations databases. Reference lists of included reviews were searched for additional references not returned by electronic searches. REVIEW METHODS: English language systematic reviews or meta-analyses published since 2000 that assessed the effectiveness of interventions in improving the QoL of patients with chronic conditions. Two reviewers independently assessed reviews for eligibility, extracted data, and assessed the quality of included studies. RESULTS: A total of 41 reviews assessed QoL. Twenty one reviews presented quantitative data, 17 reviews were narrative and three were reviews of reviews. The intervention categories included case management, Chronic care model (CCM), discharge management, multidisciplinary teams (MDT), complex interventions, primary vs. secondary care follow-up, and self-management. CONCLUSIONS: Taken together, the 41 reviews that assessed QoL provided a mixed picture of the effectiveness of integrated care interventions. Case management interventions showed some positive findings as did CCM interventions, although these interventions were more likely to be effective when they included a greater number of components. Discharge management interventions appeared to be particularly successful for patients with heart failure. MDT and self-management interventions showed a mixed picture. In general terms, interventions were typically more effective in improving condition-specific QoL rather than global QoL. This review provided the first overview of international evidence for the effectiveness of integrated care interventions for improving the QoL for patients with chronic conditions.


Assuntos
Doença Crônica/psicologia , Qualidade de Vida , Humanos , Metanálise como Assunto , Alta do Paciente , Projetos de Pesquisa
3.
BMC Nephrol ; 18(1): 334, 2017 Nov 23.
Artigo em Inglês | MEDLINE | ID: mdl-29169332

RESUMO

BACKGROUND: Pre-dialysis education (PDE) is provided to thousands of patients every year, helping them decide which renal replacement therapy (RRT) to choose. However, its effectiveness is largely unknown, with relatively little previous research into patients' views about PDE, and no research into staff views. This study reports findings relevant to PDE from a larger mixed methods study, providing insights into what staff and patients think needs to improve. METHODS: Semi-structured interviews in four hospitals with 96 clinical and managerial staff and 93 dialysis patients, exploring experiences of and views about PDE, and analysed using thematic framework analysis. RESULTS: Most patients found PDE helpful and staff valued its role in supporting patient decision-making. However, patients wanted to see teaching methods and materials improve and biases eliminated. Staff were less aware than patients of how informal staff-patient conversations can influence patients' treatment decision-making. Many staff felt ill equipped to talk about all treatment options in a balanced and unbiased way. Patient decision-making was found to be complex and patients' abilities to make treatment decisions were adversely affected in the pre-dialysis period by emotional distress. CONCLUSIONS: Suggested improvements to teaching methods and educational materials are in line with previous studies and current clinical guidelines. All staff, irrespective of their role, need to be trained about all treatment options so that informal conversations with patients are not biased. The study argues for a more individualised approach to PDE which is more like counselling than education and would demand a higher level of skill and training for specialist PDE staff. The study concludes that even if these improvements are made to PDE, not all patients will benefit, because some find decision-making in the pre-dialysis period too complex or are unable to engage with education due to illness or emotional distress. It is therefore recommended that pre-dialysis treatment decisions are temporary, and that PDE is replaced with on-going RRT education which provides opportunities for personalised education and on-going review of patients' treatment choices. Emotional support to help overcome the distress of the transition to end-stage renal disease will also be essential to ensure all patients can benefit from RRT education.


Assuntos
Tomada de Decisões , Conhecimentos, Atitudes e Prática em Saúde , Corpo Clínico Hospitalar , Educação de Pacientes como Assunto/métodos , Pesquisa Qualitativa , Diálise Renal/métodos , Adolescente , Adulto , Idoso , Feminino , Humanos , Masculino , Corpo Clínico Hospitalar/tendências , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/tendências , Diálise Renal/psicologia , Diálise Renal/tendências , Adulto Jovem
4.
BMC Health Serv Res ; 17(1): 86, 2017 01 26.
Artigo em Inglês | MEDLINE | ID: mdl-28122616

RESUMO

BACKGROUND: Improving safety in care homes is becoming increasingly important. Care home residents typically have multiple physical and/or cognitive impairments, and adverse events like falls often lead to hospital attendance or admission. Developing a safety culture is associated with beneficial impacts on safety outcomes, but the complex needs of care home residents, coupled with staffing pressures in the sector, pose challenges for positive safety practices to become embedded at the individual and organisational levels. Staff training and education can positively enforce safety culture and reduce the incidence of harms, but improvement initiatives are often short lived and thorough evaluation is uncommon. This protocol outlines an evaluation of a large-scale care home improvement programme in the West Midlands. METHODS: The programme will run in 35 care homes across Walsall and Wolverhampton over 24 months, and we anticipate that 30 care homes will participate in the evaluation (n = 1500 staff). The programme will train staff and managers in service improvement techniques, with the aim of strengthening safety culture and reducing adverse safety event rates. The evaluation will use a pre-post design with mixed methods. Quantitative data will focus on: care home manager and staff surveys administered at several time points and analysis of adverse event rates. Data on hospital activity by residents at participating care homes will be compared to matched controls. Qualitative data on experience of training and the application of learning to practice will be collected via semi-structured interviews with staff (n = 48 to 64) and programme facilitators (n = 6), and staff focus groups (n = 36 to 48 staff). The primary outcome measure is the change in mean score on the safety climate domain of the Safety Attitudes Questionnaire between baseline and programme end. DISCUSSION: This mixed methods evaluation of a large-scale care home improvement programme will allow a substantial amount of qualitative and quantitative data to be collected. This will enable an assessment of the extent to which care home staff training can effectively improve safety culture, lower the incidence of adverse safety events such as falls and pressure ulcers, and potentially reduce care home resident's use of acute services.


Assuntos
Casas de Saúde , Segurança do Paciente/normas , Melhoria de Qualidade , Acidentes por Quedas , Grupos Focais , Pesquisas sobre Atenção à Saúde , Humanos , Entrevistas como Assunto , Úlcera por Pressão
5.
BMC Nephrol ; 17(1): 111, 2016 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-27484760

RESUMO

BACKGROUND: As a result of difficulties related to their illness, diagnosis and treatment, patients with end-stage renal disease experience significant emotional and psychological problems, which untreated can have considerable negative impact on their health and wellbeing. Despite evidence that patients desire improved support, management of their psychosocial problems, particularly at the lower-level, remains sub-optimal. There is limited understanding of the specific support that patients need and want, from whom, and when, and also a lack of data on what helps and hinders renal staff in identifying and responding to their patients' support needs, and how barriers to doing so might be overcome. Through this research we therefore seek to determine what, when, and how, support for patients with lower-level emotional and psychological problems should be integrated into the end-stage renal disease pathway. METHODS/DESIGN: The research will involve two linked, multicentre studies, designed to identify and consider the perspectives of patients at five different stages of the end-stage renal disease pathway (Study 1), and renal staff working with them (Study 2). A convergent, parallel mixed methods design will be employed for both studies, with quantitative and qualitative data collected separately. For each study, the data sets will be analysed separately and the results then compared or combined using interpretive analysis. A further stage of synthesis will employ data-driven thematic analysis to identify: triangulation and frequency of themes across pathway stages; patterns and plausible explanations of effects. DISCUSSION: There is an important need for this research given the high frequency of lower-level distress experienced by end-stage renal disease patients and lack of progress to date in integrating support for their lower-level psychosocial needs into the care pathway. Use of a mixed methods design across the two studies will generate a holistic patient and healthcare professional perspective that is more likely to identify viable solutions to enable implementation of timely and integrated care. Based on the research outputs, appropriate support interventions will be developed, implemented and evaluated in a linked follow-on study.


Assuntos
Atitude do Pessoal de Saúde , Aconselhamento/métodos , Emoções , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Apoio Social , Humanos , Projetos de Pesquisa , Inquéritos e Questionários , Resultado do Tratamento
6.
J Interprof Care ; 28(3): 186-93, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-24428770

RESUMO

The integrated care development programme (ICDP) was a continuing interprofessional educational programme for health and social care managers and commissioners. Multi-professional strategic teams from a single locality participated in university and workplace-based learning activities centred on the development of an integrated business plan to address a local priority for improvement. The evaluation used participant self-assessment, semi-structured interviews and group discussions to assess achievement of expected impacts on the participants, their organisations and partnerships, and patient/service user outcomes. The findings indicate that whilst those employed in management and commissioning roles had considerable experience of working across professional and agency boundaries they derived individual benefits from a workplace IPE programme. The principles of design and delivery developed in pre-registration and clinician/practitioner IPE courses also applied to those working at a more strategic level. Organisational impacts were reported, but 6 months post-programme evidence was not yet available of significant improvements in patient outcomes and /or financial efficiencies. Individual motivation, team dynamics and support from line managers all affected the extent to which individual and organisational impacts were achieved.


Assuntos
Educação Continuada , Capacitação em Serviço , Comunicação Interdisciplinar , Local de Trabalho , Prestação Integrada de Cuidados de Saúde , Humanos , Entrevistas como Assunto , Aprendizagem , Inovação Organizacional , Desenvolvimento de Programas , Pesquisa Qualitativa
7.
Perit Dial Int ; 42(3): 297-304, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-33331224

RESUMO

BACKGROUND: While numerous studies have explored the patient experience of dialysis or other end-stage kidney disease (ESKD) treatments, few have explored the process of transitioning between dialysis modalities. This study aimed to develop an in-depth understanding of patient and caregiver perceptions and experiences of the transition from peritoneal to haemodialysis (HD) and to identify ways in which transitions can be optimised. METHODS: Fifty-four in-depth, semi-structured interviews were undertaken at six study sites across the West Midlands, UK (n = 23), and Queensland, Australia (n = 31). Thirty-nine participants were patients with ESKD; the remainder were family members. An inductive analytical approach was employed, with findings synthesised across sites to identify themes that transcended country differences. RESULTS: Of the 39 patient transitions, only 4 patients reported a wholly negative transition experience. Three cross-cutting themes identified common transition experiences and areas perceived to make a difference to the treatment transition: resistance to change and fear of HD; transition experience shared with family; and bodily adjustment and sense of self. CONCLUSION: Although each transition is unique to the individual and their circumstances, kidney care services could optimise the process by recognising these patient-led themes and developing strategies that engage with them. Kidney care services should consider ways to keep patients aware of potential future treatment options and present them objectively. There is potential value in integrating expert support before and during treatment transitions to identify and address patient and family concerns.


Assuntos
Falência Renal Crônica , Diálise Peritoneal , Inglaterra , Família , Feminino , Humanos , Falência Renal Crônica/terapia , Masculino , Pesquisa Qualitativa , Diálise Renal
8.
PLoS One ; 16(2): e0247455, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33617583

RESUMO

OBJECTIVES: This paper reports a mixed methods evaluation of a new pathway to improve clinical outcomes for older people with fractures treated at a hospital Trust in the West Midlands, UK. The paper focuses specifically on the context surrounding the translation of the new pathway into practice and the way that external and internal factors influenced its adaptation and implementation. METHODS: Quantitative analysis used a controlled Interrupted Time Series (ITS) to estimate the effect of the new pathway on patient complication rate, median length of hospital stay and 30-day mortality by comparing the pre- and post-intervention periods. ITS data were extracted from the UK Trauma Audit and Research Network (TARN) database and a patient-level control group identified using propensity score matching. Parallel qualitative analysis aimed to examine the context surrounding the new pathway and how external and internal factors might influence its adaption and implementation into clinical practice. Data were collected via semi-structured interviews (n = 16) undertaken with staff and clinical stakeholders within the Trust and were analysed using the COM-B (Capability, Opportunity, Motivation) model of behaviour. RESULTS: No statistically significant effects were found for any of the patient outcomes studied in the controlled ITS analysis. Qualitative data suggest that the lack of effectiveness of the new initiative can be explained with reference to the capability, opportunity and motivation of internal Trust stakeholders to engage with the pathway, which created a non-receptive environment within the Trust. CONCLUSIONS: Successfully implementing new care pathways in environments that may be non-receptive to change requires efforts to be put into winning 'hearts and minds' within the organisation to ensure engagement from key stakeholders during intervention development. Evidence must be provided internally of the way that a given intervention will alleviate the problematic issues being experienced within the organisation, and external dissemination of results should be avoided until there is evidence of a positive effect within the organisation where the new care pathway is first implemented.


Assuntos
Fraturas Ósseas/tratamento farmacológico , Assistência ao Paciente/métodos , Procedimentos Clínicos , Gerenciamento de Dados/métodos , Feminino , Hospitais , Humanos , Análise de Séries Temporais Interrompida/métodos , Masculino , Pesquisa Qualitativa , Reino Unido
9.
PLoS One ; 15(11): e0241629, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33152018

RESUMO

OBJECTIVES: To explore patient perceptions and experiences of mild-to-moderate emotional distress and the support offered by kidney units to patients with end-stage kidney disease. METHODS: In-depth, semi-structured qualitative interviews with patients (n = 46) being treated for end-stage kidney disease in four hospital Trusts, with data analysed thematically. RESULTS: Patients described multiple sources of distress and talked about the substantial burden that emotional challenges raised for their ability to manage their condition and develop coping strategies. Many patients did not feel it appropriate to disclose their emotional issues to staff on the kidney unit, due to a perceived lack of time for staff to deal with such issues, or a perception that staff lacked the necessary skills to provide resolution. Five themes were identified from the patient interviews, broadly related to patients' experience of distress, and the support offered by the kidney unit: i) the emotional burden that distress placed on patients; ii) patients' relationship with the treatment for their condition; iii) strategies for coping and adjustment; iv) patient-staff interactions and the support offered by the kidney unit, and v) the mediating impact of the treatment environment on patient experience of distress and their ability to raise emotional issues with staff. CONCLUSIONS: Many patients felt unprepared for the likelihood of experiencing emotional issues as part of their condition, for which pre-dialysis education could help in managing expectations, along with support to help patients to develop appropriate coping strategies and adjustments. These findings demonstrate the importance of recognising patient distress and ensuring that talking about distress becomes normalised for patients with end-stage kidney disease.


Assuntos
Adaptação Psicológica , Falência Renal Crônica/psicologia , Angústia Psicológica , Idoso , Feminino , Humanos , Falência Renal Crônica/epidemiologia , Masculino , Pessoa de Meia-Idade , Relações Profissional-Paciente , Reino Unido
10.
BMJ Open ; 10(3): e035627, 2020 03 31.
Artigo em Inglês | MEDLINE | ID: mdl-32234745

RESUMO

OBJECTIVE: To explore why transplant patients experience unexpected mild-to-moderate distress and what support they may need. DESIGN: Qualitative study using individual in-depth interviews. SETTING: Four National Health Service (NHS) Trusts in the Midlands, UK. PARTICIPANTS: Fifteen renal transplant patients meeting the criteria for mild-to-moderate distress from their responses to emotion thermometers. MAIN OUTCOME MEASURES: Identification of the reasons for distress and support options acceptable to renal transplant patients. RESULTS: Three themes were interpreted from the data: 'I am living with a "foreign body" inside me', 'why am I distressed?' and 'different patients want different support'. Following their transplant, participants felt that they should be happy and content, but this was often not the case. They described a range of feelings about their transplant, such as uncertainty about the lifespan of their new kidney, fear of transplant failure or fear of the donor having health conditions that may transfer to them. A few experienced survivors' guilt when others they had met at the dialysis unit had not received a transplant or because someone had died to enable them to receive the transplant. No longer having regular contact with the renal unit made participants feel isolated. Some participants did not initially attribute the source of their distress to their transplant. Participants' preferred support for their distress and their preferences about who should deliver it varied from peer support to seeing a psychologist. CONCLUSIONS: Raising the issue of post-transplant mild-to-moderate distress with patients and encouraging them to think about and plan coping strategies pretransplant may prove beneficial for the patient and healthcare provider. Patients should be able to choose from a variety of support options.


Assuntos
Adaptação Psicológica , Transplante de Rim/efeitos adversos , Transplante de Rim/psicologia , Estresse Psicológico , Adulto , Idoso , Medo , Feminino , Corpos Estranhos , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia , Estresse Psicológico/terapia
11.
Perit Dial Int ; 40(6): 548-555, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32063183

RESUMO

BACKGROUND: Different kidney replacement therapy modalities are available to manage end-stage kidney disease, such as home-based dialysis, in-center hemodialysis, and kidney transplantation. Although transitioning between modalities is common, data on how patients experience these transitions are scarce. This study explores patients' perspectives of transitioning from a home-based to an in-center modality. METHODS: Patients transitioning from peritoneal dialysis to in-center hemodialysis were purposively selected. Semi-structured interviews were performed, digitally recorded, and transcribed verbatim. Data analysis, consistent with Charmaz' constructivist approach of grounded theory was performed. RESULTS: Fifteen patients (10 males; mean age 62 years) participated. The conditions of the transitioning process impacted the participants' experiences, resulting in divergent experiences and associated emotions. Some participants experienced a loss of control due to the therapy-related changes. Some felt tied down and having lost independence, whereas others stated they regained control as they felt relieved from responsibility. This paradox of control was related to the patient having or not having (1) experienced a fit of hemodialysis with their personal lifestyle, (2) a frame of reference, (3) higher care requirements, (4) insight into the underlying reasons for transitioning, and (5) trust in the healthcare providers. CONCLUSIONS: Care teams need to offer opportunities to elicit patients' knowledge and fears, dispel myths, forge connections with other patients, and visit the dialysis unit before transition to alleviate anxiety. Interventions that facilitate a sense of control should be grounded in the meaning that the disorder has for the person and how it impacts their sense of self.


Assuntos
Falência Renal Crônica , Diálise Peritoneal , Hemodiálise no Domicílio , Humanos , Falência Renal Crônica/terapia , Masculino , Pessoa de Meia-Idade , Diálise Renal , Terapia de Substituição Renal
12.
PLoS One ; 14(11): e0225269, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31751382

RESUMO

OBJECTIVES: To explore staff perceptions of barriers to the identification of mild to moderate distress and the provision of emotional support in patients with end-stage renal disease. METHODS: Qualitative semi-structured interviews with staff in two hospitals (n = 31), with data analysed using a hybrid approach combining thematic analysis with aspects of grounded theory. RESULTS: Staff appeared very aware that many patients with end-stage renal disease experience distress, and most thought distressed patients should be helped as part of routine care. However, practice was variable and looking for and addressing distress was not embedded in care pathways. Interviews identified six themes: i) staff perceptions about how distress is manifested and what causes distress were variable; ii) staff perceptions of patients could lead to distress being overlooked because patients were thought to hide their distress whilst some groups were assumed to be more prone to distress than others; iii) role perceptions varied, with many staff believing it to be their role but not feeling comfortable with it, with doctors being particularly ambivalent; iv) fears held back some staff, who were concerned about what might happen when talking about distress, or who found the emotional load for themselves to be too high; v) staff felt they lacked skills, confidence and training, vi) capacity to respond may be limited, as staff perceive there to be insufficient time, with little or no specialist support services to refer patients to. CONCLUSIONS: Staff perceived significant barriers in identifying and responding to patient distress. Barriers related to skills and knowledge could be addressed through training, with training ideally targeted at staff with positive attitudes, but who currently lack skills and confidence. Barriers related to role perceptions would be harder to address. The study is relevant internationally as part of improving long-term condition pathways.


Assuntos
Falência Renal Crônica/epidemiologia , Falência Renal Crônica/psicologia , Angústia Psicológica , Atitude do Pessoal de Saúde , Emoções , Medo , Humanos , Percepção , Vigilância em Saúde Pública , Pesquisa Qualitativa , Apoio Social , Inquéritos e Questionários
13.
BMJ Open ; 9(5): e027982, 2019 05 15.
Artigo em Inglês | MEDLINE | ID: mdl-31097489

RESUMO

OBJECTIVES: To assess the prevalence of mild-to-moderate distress in patients with end-stage renal disease (ESRD) and determine the association between distress and patient characteristics. DESIGN: Cross-sectional survey using emotion thermometer and distress thermometer problem list. SETTING: Renal units in four hospital Trusts in the West Midlands, UK. PARTICIPANTS: Adult patients with stage 5 chronic kidney disease who were: (1) On prerenal replacement therapy. (2) On dialysis for less than 2 years. (3) On dialysis for 2 years or more (4) With a functioning transplant. OUTCOMES: The prevalence of mild-to-moderate distress, and the incidence of distress thermometer problems and patient support needs. RESULTS: In total, 1040/3730 surveys were returned (27.9%). A third of survey respondents met the criteria for mild-to-moderate distress (n=346; 33.3%). Prevalence was highest in patients on dialysis for 2 years or more (n=109/300; 36.3%) and lowest in transplant patients (n=118/404; 29.2%). Prevalence was significantly higher in younger versus older patients (χ2=14.33; p=0.0008), in women versus men (χ2=6.63; p=0.01) and in black and minority ethnic patients versus patients of white ethnicity (χ2=10.36; p=0.013). Over 40% of patients (n=141) reported needing support. More than 95% of patients reported physical problems and 91.9% reported at least one emotional problem. CONCLUSIONS: Mild-to-moderate distress is common in patients with ESRD, and there may be substantial unmet support needs. Regular screening could help identify patients whose distress may otherwise remain undetected. Further research into differences in distress prevalence over time and at specific transitional points across the renal disease pathway is needed, as is work to determine how best to support patients requiring help.


Assuntos
Falência Renal Crônica/psicologia , Diálise Renal/psicologia , Estresse Psicológico/epidemiologia , Adulto , Fatores Etários , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Fatores de Risco , Estresse Psicológico/etiologia , Reino Unido/epidemiologia , Adulto Jovem
14.
BMJ Open ; 9(12): e035739, 2019 12 17.
Artigo em Inglês | MEDLINE | ID: mdl-31852714

RESUMO

INTRODUCTION: The voluntary sector provides a range of specialist services to survivors of sexual violence, many of which have evolved from grass roots organisations responding to unmet local needs. However, the evidence base is poor in terms of what services are provided to which groups of survivors, how voluntary sector specialist (VSS) services are organised and delivered and how they are commissioned. This will be the first national study on the role of the voluntary sector in supporting survivors in England. METHODS AND ANALYSIS: This study uses an explanatory sequential naturalistic mixed-methods design with two stages. For stage 1, two national surveys of providers' and commissioners' views on designing and delivering VSS services will facilitate detailed mapping of service provision and commissioning in order to create a taxonomy of VSS services. Variations in the national picture will then be explored in stage 2 through four in-depth, qualitative case studies using the critical incident technique to explain the observed variations and understand the key contextual factors which influence service provision. Drawing on theory about the distinctive service contribution of the voluntary sector, survivors will be involved as co-researchers and will play a central role in data collection and interpretation. ETHICS AND DISSEMINATION: Ethical approval has been granted by the University of Birmingham research ethics committee for stage 1 of the project. In line with the sequential and co-produced study design, further applications for ethical review will be made in due course. Dissemination activities will include case study and end-of-project workshops; good practice guides; a policy briefing; project report; bitesize findings; webinars; academic articles and conference presentations. The project will generate evidence about what survivors want from and value about services and new understanding about how VSS services should be commissioned and provided to support survivors to thrive in the long term.


Assuntos
Vítimas de Crime/reabilitação , Projetos de Pesquisa , Delitos Sexuais , Apoio Social , Voluntários , Inglaterra , Humanos , Serviços de Saúde Mental/economia , Serviços de Saúde Mental/organização & administração
15.
Perit Dial Int ; 39(1): 4-12, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30692232

RESUMO

Patients with end-stage kidney disease (ESKD) have different options to replace the function of their failing kidneys. The "integrated care" model considers treatment pathways rather than individual renal replacement therapy (RRT) techniques. In such a paradigm, the optimal strategy to plan and enact transitions between the different modalities is very relevant, but so far, only limited data on transitions have been published. Perspectives of patients, caregivers, and health professionals on the process of transitioning are even less well documented. Available literature suggests that poor coordination causes significant morbidity and mortality.This review briefly provides the background, development, and scope of the INTErnational Group Research Assessing Transition Effects in Dialysis (INTEGRATED) initiative. We summarize the literature on the transition between different RRT modalities. Further, we present an international research plan to quantify the epidemiology and to assess the qualitative aspects of transition between different modalities.


Assuntos
Prestação Integrada de Cuidados de Saúde/métodos , Falência Renal Crônica/terapia , Transferência de Pacientes/métodos , Terapia de Substituição Renal/métodos , Humanos , Projetos de Pesquisa
16.
Trials ; 19(1): 574, 2018 Oct 19.
Artigo em Inglês | MEDLINE | ID: mdl-30340637

RESUMO

BACKGROUND: Video clinics, where patients can have a hospital appointment with their clinician from home, are emerging in practice, but their effectiveness is unclear. This study will evaluate whether a video clinic implemented at the University Hospitals Birmingham (UHB) NHS Foundation Trust improves patient satisfaction compared to standard face-to-face appointments for liver transplant patients. METHODS: This will be a parallel, two-arm, statistician-blinded, randomised evaluation. Clinically stable liver patients at 1 to 5 years post-transplant (n = 180) will be randomised in equal numbers to video clinic appointments (intervention) or standard face-to-face appointments (control). The intervention group will have outpatient appointments from home via a secure video link accessed through the UHB patient portal. All patients will complete baseline questionnaires before randomisation and electronic follow-up questionnaires after each follow-up appointment during the subsequent 12 months. The primary outcome is the difference in scores between groups for three domains of patient satisfaction, namely 'convenience of location', 'getting through to the office by phone' and 'length of time waiting' (modified Visit-Specific Satisfaction Instrument). Secondary outcomes include quality of life (EQ-5D-5 L), costs, clinical contacts and user experience. Statistical analysis will be descriptive and performed on an intention-to-treat basis. The primary outcome will be analysed using baseline and 3-, 6-, 9- and 12-month questionnaires (according to patient follow-up appointment frequency) and comparisons made between study arms. A within-trial cost consequences analysis will be undertaken on the economic data. Patients (n = 8), carers/family members (n = 6) and health professionals (n = 14) will be interviewed about the experience of video clinics and the interviews will be analysed using thematic analysis. DISCUSSION: This study will allow an in depth understanding of whether video clinics can improve patient satisfaction with their care. In addition, the intervention could save patients time and costs, removing the need to travel long distances for outpatient appointments. Video clinics may be applicable to a wide range of other clinical settings and health conditions. The study has been approved by the NHS Health Research Authority and a National Research Ethics Committee (Ref: 17/WM/0338) and research governance approval has been obtained from UHB (Ref: RRK6080). TRIAL REGISTRATION: ISRCTN: 14093266 (25/03/2018; retrospectively registered).


Assuntos
Assistência Ambulatorial , Transplante de Fígado , Ensaios Clínicos Pragmáticos como Assunto , Gravação em Vídeo , Coleta de Dados , Humanos , Avaliação de Resultados em Cuidados de Saúde , Satisfação do Paciente , Pesquisa Qualitativa , Tamanho da Amostra
17.
BMJ Open ; 7(7): e016921, 2017 Jul 13.
Artigo em Inglês | MEDLINE | ID: mdl-28710226

RESUMO

OBJECTIVE: To assess how well the LACE index and its constituent elements predict 30-day hospital readmission, and to determine whether other combinations of clinical or sociodemographic variables may enhance prognostic capability. DESIGN: Retrospective cohort study with split sample design for model validation. SETTING: One large hospital Trust in the West Midlands. PARTICIPANTS: All alive-discharge adult inpatient episodes between 1 January 2013 and 31 December 2014. DATA SOURCES: Anonymised data for each inpatient episode were obtained from the hospital information system. These included age at index admission, gender, ethnicity, admission/discharge date, length of stay, treatment specialty, admission type and source, discharge destination, comorbidities, number of accident and emergency (A&E) visits in the 6 months before the index admission and whether a patient was readmitted within 30 days of index discharge. OUTCOME MEASURES: Clinical and patient characteristics of readmission versus non-readmission episodes, proportion of readmission episodes at each LACE score, regression modelling of variables associated with readmission to assess the effectiveness of LACE and other variable combinations to predict 30-day readmission. RESULTS: The training cohort included data on 91 922 patient episodes. Increasing LACE score and each of its individual components were independent predictors of readmission (area under the receiver operating characteristic curve (AUC) 0.773; 95% CI 0.768 to 0.779 for LACE; AUC 0.806; 95% CI 0.801 to 0.812 for the four LACE components). A LACE score of 11 was most effective at distinguishing between higher and lower risk patients. However, only 25% of readmission episodes occurred in the higher scoring group. A model combining A&E visits and hospital episodes per patient in the previous year was more effective at predicting readmission (AUC 0.815; 95% CI 0.810 to 0.819). CONCLUSIONS: Although LACE shows good discriminatory power in statistical terms, it may have little added value over and above clinical judgement in predicting a patient's risk of hospital readmission.


Assuntos
Serviço Hospitalar de Emergência , Pacientes Internados/estatística & dados numéricos , Tempo de Internação/estatística & dados numéricos , Gravidade do Paciente , Readmissão do Paciente/estatística & dados numéricos , Adulto , Idoso , Comorbidade , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Análise Multivariada , Prognóstico , Curva ROC , Estudos Retrospectivos , Medição de Risco , Fatores de Tempo , Reino Unido
18.
Clin Kidney J ; 9(3): 516-24, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-27274842

RESUMO

BACKGROUND: Many patients with end-stage renal disease (ESRD) need and want improved emotional and psychological support. Explicit attention to patients' emotional issues during consultations can help, yet renal consultants rarely address emotional problems. This qualitative study aimed to evaluate whether two different low-cost interventions could individually enable consultants to talk with patients about their emotional concerns during routine outpatient consultations. METHOD: One intervention involved patients using a Patient Issues Sheet to identify two to three issues they would like to talk about in their consultation and the second involved consultants asking patients a direct question about their emotional feelings. Consultants were trained to handle any emotional issues raised. Semi-structured interviews were conducted with five consultants and 36 ESRD patients from two UK renal units. Interviews were transcribed verbatim and analysed using the constant comparative method. RESULTS: Although consultants and patients tended to use the two interventions in different ways, they expressed generally positive views about how helpful the interventions were in promoting discussion of emotional issues. Consultants appreciated the training for facilitating empathetic handling of patients' emotional disclosures and containment of discussion. Most patients who raised emotional concerns were satisfied with their consultant's responses, while others were dissuaded from more explicit discussion by their consultant's concentration on physical considerations. CONCLUSIONS: These qualitative study findings suggest that both interventions are feasible and acceptable and have the potential to help consultants improve emotional and psychological patient care, providing cognitive and behavioural tools to enable discussion of emotional issues during routine outpatient consultations.

19.
BMJ Open ; 6(11): e011952, 2016 11 21.
Artigo em Inglês | MEDLINE | ID: mdl-27872113

RESUMO

OBJECTIVE: To summarise the evidence regarding the effectiveness of integrated care interventions in reducing hospital activity. DESIGN: Umbrella review of systematic reviews and meta-analyses. SETTING: Interventions must have delivered care crossing the boundary between at least two health and/or social care settings. PARTICIPANTS: Adult patients with one or more chronic diseases. DATA SOURCES: MEDLINE, Embase, ASSIA, PsycINFO, HMIC, CINAHL, Cochrane Library (HTA database, DARE, Cochrane Database of Systematic Reviews), EPPI-Centre, TRIP, HEED, manual screening of references. OUTCOME MEASURES: Any measure of hospital admission or readmission, length of stay (LoS), accident and emergency use, healthcare costs. RESULTS: 50 reviews were included. Interventions focused on case management (n=8), chronic care model (CCM) (n=9), discharge management (n=15), complex interventions (n=3), multidisciplinary teams (MDT) (n=10) and self-management (n=5). 29 reviews reported statistically significant improvements in at least one outcome. 11/21 reviews reported significantly reduced emergency admissions (15-50%); 11/24 showed significant reductions in all-cause (10-30%) or condition-specific (15-50%) readmissions; 9/16 reported LoS reductions of 1-7 days and 4/9 showed significantly lower A&E use (30-40%). 10/25 reviews reported significant cost reductions but provided little robust evidence. Effective interventions included discharge management with postdischarge support, MDT care with teams that include condition-specific expertise, specialist nurses and/or pharmacists and self-management as an adjunct to broader interventions. Interventions were most effective when targeting single conditions such as heart failure, and when care was provided in patients' homes. CONCLUSIONS: Although all outcomes showed some significant reductions, and a number of potentially effective interventions were found, interventions rarely demonstrated unequivocally positive effects. Despite the centrality of integrated care to current policy, questions remain about whether the magnitude of potentially achievable gains is enough to satisfy national targets for reductions in hospital activity. TRIAL REGISTRATION NUMBER: CRD42015016458.


Assuntos
Administração de Caso/normas , Prestação Integrada de Cuidados de Saúde/métodos , Hospitalização/estatística & dados numéricos , Doença Crônica/terapia , Análise Custo-Benefício , Humanos , Metanálise como Assunto , Qualidade de Vida , Revisões Sistemáticas como Assunto
20.
J Ren Care ; 42(4): 212-222, 2016 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-27753287

RESUMO

BACKGROUND: Many patients with end-stage kidney disease (ESKD) have significant psychosocial needs as a consequence of their illness and treatment. Unmet needs can impact negatively on their health and well-being. Patients want improved psychosocial support particularly in relation to coping and adjustment. Little is known about the relevance and applicability to patients of intervention approaches to support their psychosocial needs. OBJECTIVES: To explore patients' attitudes to different intervention approaches that could be developed to help them cope with the psychosocial stressors of ESKD, and to assess the potential acceptability of these approaches. METHODS AND MATERIALS: Qualitative interviews and mini-focus groups were undertaken with 15 patients who have ESKD. Different intervention approaches were shown to participants through use of audio-visual films. Constant comparative data analysis was employed to derive a framework of categories and themes, guided by stress and coping theory. RESULTS: Psychosocial support was viewed by patients as an essential constituent of quality care. While some intervention approaches were more or less popular than others, responses were overall variable and individualistic, seemingly influenced by participants' personal coping strategies. Any perceived connection with depression could make an intervention approach less attractive; physical exercise was particularly acceptable because there was no explicit association with someone not coping. CONCLUSIONS: There is value in clinicians making available a choice of appropriately timed and tailored interventions to meet patients' different psychosocial support needs at key points of distress across the ESKD pathway. Congruence between intervention features and patient coping style could stimulate interest and take-up.


Assuntos
Adaptação Psicológica , Atitude Frente a Saúde , Falência Renal Crônica/psicologia , Sistemas de Apoio Psicossocial , Estresse Psicológico/terapia , Adulto , Idoso , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Grupo Associado , Pesquisa Qualitativa , Adulto Jovem
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