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1.
Int J Clin Pharm ; 2024 May 11.
Artigo em Inglês | MEDLINE | ID: mdl-38734866

RESUMO

BACKGROUND: Patient satisfaction has been positively associated with adherence which is expected to impact outcomes. Although vital for successful implementation of biosimilar medicines, little is known about the patient perspective of transition. AIM: The aim of this study was to investigate clinical outcomes and patient experience of transitioning between reference adalimumab and a biosimilar (SB5). METHOD: iBaSS is a phase IV single-centre, prospective, randomised, single-blind, cross-over study in adult subjects with Crohn's disease. Participants, stable on adalimumab before consent, received 24 weeks of treatment with both reference adalimumab and SB5. The primary outcome was the proportion of patients maintaining baseline clinical status throughout each treatment period, with patients' perspective of disease control and treatment satisfaction assessed as secondary outcomes. RESULTS: A total of 112 participants, representative of the heterogeneous patient populations encountered in routine clinical practice, were enrolled. A similar proportion of participants maintained baseline clinical status through each treatment period: 81.8% with reference adalimumab and 79.5% with SB5. Patient reported outcomes (IBD-Control questionnaire (SB5: 15.5; reference adalimumab 15) and TSQM), adverse events and therapeutic drug monitoring remained consistent through both treatment periods, although a higher median injection pain VAS score was noted with SB5 (53/100 versus 6/100 with reference adalimumab). The number of switches undertaken in the study did not impact serum drug concentration or immunogenicity. CONCLUSION: This study, mimicking real world adalimumab transition, demonstrates that patients undertaking brand transition can be expected to have consistent clinical and satisfaction outcomes. CLINICAL TRIAL REGISTERED WITH EUDRACT: Number 2018-004967-30.

2.
BMC Geriatr ; 23(1): 591, 2023 09 25.
Artigo em Inglês | MEDLINE | ID: mdl-37743469

RESUMO

BACKGROUND: A third of older people take five or more regular medications (polypharmacy). Conducting medication reviews in primary care is key to identify and reduce/ stop inappropriate medications (deprescribing). Recent recommendations for effective deprescribing include shared-decision making and a multidisciplinary approach. Our aim was to understand when, why, and how interventions for medication review and deprescribing in primary care involving multidisciplinary teams (MDTs) work (or do not work) for older people. METHODS: A realist synthesis following the Realist And Meta-narrative Evidence Syntheses: Evolving Standards guidelines was completed. A scoping literature review informed the generation of an initial programme theory. Systematic searches of different databases were conducted, and documents screened for eligibility, with data extracted based on a Context, Mechanisms, Outcome (CMO) configuration to develop further our programme theory. Documents were appraised based on assessments of relevance and rigour. A Stakeholder consultation with 26 primary care health care professionals (HCPs), 10 patients and three informal carers was conducted to test and refine the programme theory. Data synthesis was underpinned by Normalisation Process Theory to identify key mechanisms to enhance the implementation of MDT medication review and deprescribing in primary care. FINDINGS: A total of 2821 abstracts and 175 full-text documents were assessed for eligibility, with 28 included. Analysis of documents alongside stakeholder consultation outlined 33 CMO configurations categorised under four themes: 1) HCPs roles, responsibilities and relationships; 2) HCPs training and education; 3) the format and process of the medication review 4) involvement and education of patients and informal carers. A number of key mechanisms were identified including clearly defined roles and good communication between MDT members, integration of pharmacists in the team, simulation-based training or team building training, targeting high-risk patients, using deprescribing tools and drawing on expertise of other HCPs (e.g., nurses and frailty practitioners), involving patents and carers in the process, starting with 'quick wins', offering deprescribing as 'drug holidays', and ensuring appropriate and tailored follow-up plans that allow continuity of care and management. CONCLUSION: We identified key mechanisms that could inform the design of future interventions and services that successfully embed deprescribing in primary care.


Assuntos
Desprescrições , Idoso , Humanos , Cuidadores , Pessoal de Saúde , Revisão de Medicamentos , Atenção Primária à Saúde
3.
Nutr Clin Pract ; 38(6): 1392-1408, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37063048

RESUMO

BACKGROUND: Parenteral nutrition (PN)-related patient safety incidents have been associated with harm. Large-scale studies are scarce, and little is known about contributory factors. This study evaluated PN-related incident reports that described harm using a national database. MATERIALS AND METHODS: A retrospective evaluation of incident reports involving PN in England and Wales reported to the National Reporting and Learning System between 2015 and 2020. We described frequency by degree of reported harm and incident characteristics. Content analysis was undertaken to understand contributory factors for reports related to moderate/severe harm or death. RESULTS: 12,907 incident reports were identified. After screening, 2242 were evaluated; 1879 (83.8%) reported no harm, 309 (13.8%) low harm, 47 (0.02%) moderate harm, 4 (0.002%) severe harm, 3 (0.001%) deaths. The most reported age group, medication process, and error category were neonates (<28 days) (n = 570/1923, 29.6%), administration (n = 1126/2242, 50%), and omitted medication/ingredient (n = 291/2242, 13%), respectively. Content analysis of reports related to moderate/severe harm and death revealed patient age of <1 year, dependence on home PN (HPN), comorbidities, and staff errors as contributory factors. CONCLUSIONS: This is the first evaluation of PN-related incident reports in England and Wales to our knowledge. We demonstrated a low frequency of reports related to moderate or severe harm or death. More incidents were reported for neonates and during the administration processes. To reduce harm, systems/procedures that reduce errors in high-risk patients (eg, neonates, patients receiving HPN) need to be established within organizations. Database limitations of voluntary reporting systems were recognized.


Assuntos
Nutrição Parenteral no Domicílio , Segurança do Paciente , Recém-Nascido , Humanos , Estudos Retrospectivos , Gestão de Riscos , Preparações Farmacêuticas
4.
J Child Health Care ; : 13674935231158197, 2023 Apr 28.
Artigo em Inglês | MEDLINE | ID: mdl-37118655

RESUMO

Safety netting (SN) provides specific information to caregivers identifying need to re-consult. SN is often used to bridge diagnostic uncertainty for first-contact healthcare professionals. This systematic narrative review investigated experiences of caregivers' regarding SN information received during acute child health consultations. Searches between April and December 2021 of six bibliographic databases (CINAHL, PsycINFO, BNI, EMCARE, MEDLINE and Web of Science) identified 3258 records. No studies were excluded based on quality and nine papers were included; the Mixed Methods Appraisal Tool was used to critically analyse papers and findings were summarised narratively. Four themes emerged: Importance of receiving Red-Flag-Symptom information, influences of specific mediums for information transfer to caregivers, key principles of SN as desired by caregivers and contextual influences of information transfer to caregivers. Quality of evidence was fair; review findings could provide underpinning principles to enable first-contact clinicians to enhance their person-centred approach to SN practice. There was a paucity of evidence generally, with a relatively small number of studies that captured specific SN activity during consultations. More research is also needed to capture the full-breadth of first-contact clinicians, particularly in non-clinical settings such as the home or school.

5.
Pediatr Pulmonol ; 57(11): 2589-2602, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-35932183

RESUMO

OBJECTIVES: To describe a transparent approach to planning a digital intervention for adolescents to self-manage their asthma using breathing retraining (BRT), based on an existing, effective adult intervention (BREATHE). METHODS: A theory-, evidence-, and Person-Based Approach was used to maximise the effectiveness and persuasiveness of the intervention. A scoping review and semistructured interviews with target intervention users (N = 18, adolescents aged 12-17 years with asthma and parents) were carried out to explore user perspectives, barriers, and facilitators towards the intended behaviours and potential intervention features. The combined evidence was used alongside and to inform theory-based activities and enabled iterative planning of the intervention. RESULTS: The scoping review identified themes relating to user-specific self-management issues, content, education, training needs, and features for a digital intervention. Interviews elicited potential barriers to intended behaviours such as the anticipated embarrassment of using BRT and concerns around remaining calm. Facilitators included BRT delivered by adolescents who share experiences of asthma and information for performing exercises discreetly. Relevant theoretical frameworks ensured that appropriate psychological constructs were targeted. A behavioural analysis identified six intervention functions and thirty behaviour change techniques. Logic modelling mapped the programme theory and mechanisms, which aims to improve adolescent asthma-related quality of life. CONCLUSIONS: This study gives a transparent insight into the approach followed to plan a self-guided BRT intervention for adolescents and has led to identification of key behavioural issues, enabling relevant intervention content to be chosen. Insight has been given into adolescent perceptions of BRT, which facilitated development of the prototype intervention.


Assuntos
Asma , Autogestão , Adolescente , Adulto , Asma/psicologia , Asma/terapia , Terapia por Exercício , Humanos , Qualidade de Vida , Autogestão/métodos
7.
Int J Nurs Stud ; 132: 104275, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35667146

RESUMO

BACKGROUND: Good patient access to medicines at home during the last 12 months of life is critical for effective symptom control, prevention of distress and avoidance of unscheduled and urgent care. OBJECTIVES: To undertake an evaluation of patient and carer access to medicines at end-of-life within the context of models of service delivery. DESIGN: Evaluative, mixed method case studies of service delivery models, including cost analysis. The unit of analysis was the service delivery model, with embedded sub-units of analysis. SETTING: (i) General Practitioner services (ii) Palliative care clinical nurse specialist prescribers (iii) a 24/7 palliative care telephone support line service. PARTICIPANTS: Healthcare professionals delivering end-of-life care; patients living at home, in the last 12 months of life, and their carers. METHODS: Within each case: Patients/carers completed a structured log on medicines access experiences over an 8-week period. Logs were used as an aide memoire to sequential, semi-structured interviews with patients/carers at study entry, and at four and eight weeks. Healthcare professionals took part in semi-structured interviews focused on their experiences of facilitating access to medicines, including barriers, and facilitating factors. Data on prescribed medicines were extracted from patient records. Detailed contextual data on each case were also collected from a range of documents. Patient, carer and healthcare professional interview data were analysed using Framework Analysis to identify main themes. We estimated prescription costs and budget impact analysis of the different service models. Data were triangulated within each case. Cross-case comparison and logic models were employed to enable systematic comparisons across service delivery types. FINDINGS: Accessing medicines is a process characterised by complexity and systems inter-dependency requiring considerable co-ordination work by patients, carers and healthcare professionals. Case studies highlighted differences in speed and ease of access to medicines across service delivery models. Key issues were diversifying the prescriber workforce, the importance of continuity of relationships and team integration, access to electronic prescribing systems, shared records and improved community pharmacy stock. Per patient prescription cost differentials between services were modest but were substantial when accounting for the eligible population over the medium term. CONCLUSIONS: Experiences of medicines access would be improved through increasing numbers of nurse and pharmacist prescribers, and improving shared inter-professional access to electronic prescribing systems and patient records, within care delivery systems that prioritise continuity of relationships. Community pharmacy stock of palliative care medicines also needs to become more reliable.


Assuntos
Medicina Paliativa , Assistência Terminal , Inglaterra , Humanos , Cuidados Paliativos/métodos , Farmacêuticos
8.
Nurs Stand ; 37(3): 45-50, 2022 03 02.
Artigo em Inglês | MEDLINE | ID: mdl-35001581

RESUMO

Medicines are an integral element of the effective management of many clinical conditions. As people live longer, many of them will experience multiple long-term conditions, and will frequently require various prescribed medicines. Patients, their family members and/or carers will often have to manage their medicines at home without the assistance of nurses or other healthcare professionals. In addition, many patients do not adhere to their medicine regimens, either unintentionally due to issues such as memory loss, or intentionally because of fears about side effects, for example. This article explains how nurses practising in hospital, community and primary care settings can support patients to self-manage their medicines effectively, in accordance with the principles of shared decision-making and person-centred care.


Assuntos
Papel do Profissional de Enfermagem , Autogestão , Cuidadores , Pessoal de Saúde , Humanos , Autocuidado
9.
BJGP Open ; 5(3)2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33757961

RESUMO

BACKGROUND: Antibiotic overuse has contributed to antimicrobial resistance, which is a global public health problem. In the UK, despite the fall in rates of antibiotic prescription since 2013, prescribing levels remain high in comparison with other European countries. Prescribing in out-of-hours (OOH) care provides unique challenges for prudent prescribing, for which professionals may not be prepared. AIM: To explore the guidance available to professionals on prescribing antibiotics for common infections in OOH primary care within the UK, with a focus on training resources, guidelines, and clinical recommendations. DESIGN & SETTING: A realist-informed scoping review of peer-reviewed articles and grey literature. METHOD: The review focused on antibiotic prescribing OOH (for example, clinical guidelines and training videos). General prescribing guidance was searched whenever OOH-focused resources were unavailable. Electronic databases and websites of national agencies and professional societies were searched following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards. Findings were organised according to realist review components, that is, mechanisms, contexts, and outcomes. RESULTS: In total, 46 clinical guidelines and eight training resources were identified. Clinical guidelines targeted adults and children, and included recommendations on prescription strategy, spectrum of the antibiotic prescribed, communication with patients, treatment duration, and decision-making processes. No clinical guidelines or training resources focusing specifically on OOH were found. CONCLUSION: The results highlight a lack of knowledge about whether existing resources address the challenges faced by OOH antibiotic prescribers. Further research is needed to explore the training needs of OOH health professionals, and whether further OOH-focused resources need to be developed given the rates of antibiotic prescribing in this setting.

10.
BMC Palliat Care ; 19(1): 148, 2020 Sep 24.
Artigo em Inglês | MEDLINE | ID: mdl-32972414

RESUMO

BACKGROUND: Patient access to medicines at home during the last year of life is critical for symptom control, but is thought to be problematic. Little is known about healthcare professionals' practices in supporting timely medicines access and what influences their effectiveness. The purpose of the study was to evaluate health professionals' medicines access practices, perceived effectiveness and influencing factors. METHODS: On-line questionnaire survey of health care professionals (General Practitioners, Community Pharmacists, community-based Clinical Nurse Specialists and Community Nurses) delivering end-of-life care in primary and community care settings in England. Quantitative data were analysed using descriptive statistics. RESULTS: One thousand three hundred twenty-seven responses were received. All health professional groups are engaged in supporting access to prescriptions, using a number of different methods. GPs remain a predominant route for patients to access new prescriptions in working hours. However, nurses and, increasingly, primary care-based pharmacists are also actively contributing. However, only 42% (160) of Clinical Nurse Specialists and 27% (27) of Community Nurses were trained as prescribers. The majority (58% 142) of prescribing nurses and pharmacists did not have access to an electronic prescribing system. Satisfaction with access to shared patient records to facilitate medicines access was low: 39% (507) were either Not At All or only Slightly satisfied. Out-of-hours specialist cover was reported by less than half (49%; 656) and many General Practitioners and pharmacists lacked confidence advising about out-of-hours services. Respondents perceived there would be a significant improvement in pain control if access to medicines was greater. Those with shared records access reported significantly lower pain estimates for their caseload patients. CONCLUSIONS: Action is required to support a greater number of nurses and pharmacists to prescribe end-of-life medicines. Solutions are also required to enable shared access to patient records across health professional groups. Coverage and awareness of out-of-hours services to access medicines needs to be improved.


Assuntos
Pessoal de Saúde/tendências , Acessibilidade aos Serviços de Saúde/normas , Cuidados Paliativos/normas , Percepção , Padrões de Prática Médica/tendências , Adulto , Atitude do Pessoal de Saúde , Inglaterra , Feminino , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Humanos , Internet , Masculino , Cuidados Paliativos/métodos , Cuidados Paliativos/estatística & dados numéricos , Padrões de Prática Médica/normas , Inquéritos e Questionários
11.
Eur Respir J ; 54(1)2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31048348

RESUMO

Perceived self-efficacy is the belief that one can manage prospective situations. Good asthma self-management self-efficacy is associated with better asthma outcomes. However, a well-developed and validated tool to measure adolescent asthma self-management self-efficacy is lacking. Our objective was to develop and validate an Adolescent Asthma Self-Efficacy Questionnaire (AASEQ).The first stage of the study included a review of the literature, interviews with adolescents with asthma and consultations with parents and relevant healthcare professionals to develop a prototype scale. To assess reliability and validity, a further group of adolescents completed the prototype scale, the General Self-Efficacy Scale and KidCOPE (measures coping styles). Retesting was undertaken to assess longitudinal validity.Interviews with 28 adolescents and consultations with other stakeholders resulted in a 38-item prototype scale. Key themes were medication, symptom management, triggers, knowledge, attitude and beliefs around asthma, supportive relationships, schools and healthcare professionals. The prototype scale was completed by 243 adolescents. Factor and reliability analysis reduced it to a 27-item scale with four subsections: symptom management; medication; friends, family and school; and asthma beliefs. The 27-item scale had respectable to excellent internal consistency (α's 0.78-0.91) with results that were stable over time (intra-class correlation=0.82) in 63 subjects who completed it twice. Better adolescent asthma self-efficacy was associated with better general self-efficacy and indices of better asthma management.The AASEQ is a reliable and valid tool that is likely to aid future research and practice focused on adolescent asthma self-management and could be a useful intermediate outcome measure to assess the impact of behavioural interventions.


Assuntos
Asma/terapia , Autogestão , Inquéritos e Questionários , Adolescente , Inglaterra , Feminino , Humanos , Masculino , Estudos Prospectivos , Reprodutibilidade dos Testes , Autoeficácia
12.
Eur J Cancer Care (Engl) ; 28(5): e13081, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31124213

RESUMO

OBJECTIVE: To identify call handlers' key experiences of providing telephone help on a cancer helpline. METHODS: Semi-structured qualitative interviews with 30 call handlers from three UK-based cancer helplines. Transcribed interview data were analysed thematically. RESULTS: Thematic analysis identified three themes: (a) call handlers' perceptions of their role on the helpline, (b) challenges of working on a helpline and (c) the need for training/keeping up with competencies. Call handlers reported satisfaction with their experience. However, there are tensions: whilst advice is formally not part of the remit of the helpline, in practice the boundary between giving advice and giving information can be blurred. No follow-up with callers could be difficult and experienced as a lost opportunity to help. Managing patient expectations could be challenging, and interviewees described particular difficulties with distressed callers. Training for the role was commonplace, but there was sometimes a desire for more opportunities. CONCLUSION: There are challenges faced by helpline staff, and it can be difficult to manage callers' distress and expectations of what they might get from a call experience. Recognising the skill and complexity of the call handler role is important, as it is meeting call handlers' support and training needs. Support is important to minimise the risk to their own emotional well-being.


Assuntos
Neoplasias , Educação de Pacientes como Assunto , Papel Profissional , Apoio Social , Linhas Diretas , Humanos , Pesquisa Qualitativa , Telefone , Reino Unido
13.
Br Paramed J ; 3(3): 1-9, 2018 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-33328806

RESUMO

INTRODUCTION: Specialist paramedics in the United Kingdom are able to undertake additional training and education in the assessment and treatment of minor illness and injuries. The provision of medication often forms a part of specialist paramedic care, but there is currently no research into the perceived usefulness or impact of the use of patient group directions or on their preparedness to undertake paramedic independent and supplementary prescribing. The aim of this study was to (a) investigate the ways in which medicines are currently supplied by specialist paramedics and (b) establish views on the introduction of paramedic independent and supplementary prescribing, including practitioner preparedness and potential impact on practice. METHODS: An online questionnaire was sent to 268 specialist paramedics employed by two NHS ambulance Trusts in England who jointly employed 54% of the national population (n = 495) of specialist paramedics. Data were analysed using descriptive statistics and a framework analysis approach. RESULTS: Patient group directions were reported to be used regularly and infections, pain and exacerbations of respiratory conditions were the most frequently treated conditions by specialist paramedics.Although just over half of participants reported that patient group directions did not restrict their ability to supply medication to patients, a significant minority found them too restrictive. Examples of restrictions included contradictions to local antimicrobial guidance and being unable to supply sufficiently strong analgesia.The majority of participants (66/78, 84.6%) felt confident to undertake paramedic independent and supplementary prescribing and that it would enhance both their scope of practice (70/72, 97.2%) and patient care (67/72, 93.0%). However, participants had concerns regarding organisational readiness for paramedic independent and supplementary prescribing (50/72, 69.4%), including provision of paramedic access to patient records (65/72, 90.2%) and obtaining sufficient clinical support (39/72, 54.1%). CONCLUSIONS: Patient group directions do enable specialist paramedics to supply medication to patients in order to treat a range of conditions, but at times the paramedics felt that the patient group directions restricted autonomous practice. The majority of participants felt confident to undertake paramedic independent and supplementary prescribing and anticipated that it would enhance patient care.

14.
J Res Nurs ; 23(4): 346-357, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-34394442

RESUMO

BACKGROUND: A national clinical academic training programme has been developed in England for nurses, midwives and allied health professionals but is insufficient to build a critical mass to have a significant impact on improved patient care. AIM: We describe a partnership model led by the University of Southampton and its neighbouring National Health Service partners that has the potential to address this capacity gap. In combination with the Health Education England/National Institute of Health Research Integrated Clinical Academic programme, we are currently supporting nurses, midwives and allied health professionals at Master's (n = 28), Doctoral (n = 36), Clinical Lecturer (n = 5) and Senior Clinical Lecturer (n = 2) levels working across seven National Health Service organisations, and three nurses hold jointly funded Clinical Professor posts. RESULTS: Key to the success of our partnership model is the strength of the strategic relationship developed at all levels across and within the clinical organisations involved, from board to ward. We are supporting nurses, midwives and allied health professionals to climb, in parallel, both clinical and academic career ladders. We are creating clinical academic leaders who are driving their disciplines forward, impacting on improved health outcomes and patient benefit. CONCLUSIONS: We have demonstrated that our partnership model is sustainable and could enable doctoral capacity to be built at scale.

15.
Palliat Med ; 32(1): 246-256, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-28679073

RESUMO

BACKGROUND: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. AIMS: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients' carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. DESIGN: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants' experiences of Cancer Carers Medicines Management and trial procedures. SETTING: Community settings in two study sites. PARTICIPANTS: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. RESULTS: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. CONCLUSION: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers' management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.


Assuntos
Analgésicos/administração & dosagem , Analgésicos/uso terapêutico , Dor do Câncer/tratamento farmacológico , Cuidadores/psicologia , Adesão à Medicação/psicologia , Assistência Terminal/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
16.
Health Technol Assess ; 21(76): 1-292, 2017 12.
Artigo em Inglês | MEDLINE | ID: mdl-29265004

RESUMO

BACKGROUND: Pain affects most people approaching the end of life and can be severe for some. Opioid analgesia is effective, but evidence is needed about how best to support patients in managing these medicines. OBJECTIVES: To develop a self-management support toolkit (SMST) and delivery strategy and to test the feasibility of evaluating this intervention in a future definitive trial. DESIGN: Phase I - evidence synthesis and qualitative interviews with patients and carers. Phase II - qualitative semistructured focus groups and interviews with patients, carers and specialist palliative care health professionals. Phase III - multicentre mixed-methods single-arm pre-post observational feasibility study. PARTICIPANTS: Phase I - six patients and carers. Phase II - 15 patients, four carers and 19 professionals. Phase III - 19 patients recruited to intervention that experienced pain, living at home and were treated with strong opioid analgesia. Process evaluation interviews with 13 patients, seven carers and 11 study nurses. INTERVENTION: Self-Management of Analgesia and Related Treatments at the end of life (SMART) intervention comprising a SMST and a four-step educational delivery approach by clinical nurse specialists in palliative care over 6 weeks. MAIN OUTCOME MEASURES: Recruitment rate, treatment fidelity, treatment acceptability, patient-reported outcomes (such as scores on the Brief Pain Inventory, Self-Efficacy for Managing Chronic Disease Scale, Edmonton Symptom Assessment Scale, EuroQol-5 Dimensions, Satisfaction with Information about Medicines Scale, and feasibility of collecting data on health-care resource use for economic evaluation). RESULTS: Phase I - key themes on supported self-management were identified from evidence synthesis and qualitative interviews. Phase II - the SMST was developed and refined. The delivery approach was nested within a nurse-patient consultation. Phase III - intervention was delivered to 17 (89%) patients, follow-up data at 6 weeks were available on 15 patients. Overall, the intervention was viewed as acceptable and valued. Descriptive analysis of patient-reported outcomes suggested that interference from pain and self-efficacy were likely to be candidates for primary outcomes in a future trial. No adverse events related to the intervention were reported. The health economic analysis suggested that SMART could be cost-effective. We identified key limitations and considerations for a future trial: improve recruitment through widening eligibility criteria, refine the SMST resources content, enhance fidelity of intervention delivery, secure research nurse support at recruiting sites, refine trial procedures (including withdrawal process and data collection frequency), and consider a cluster randomised design with nurse as cluster unit. LIMITATIONS: (1) The recruitment rate was lower than anticipated. (2) The content of the intervention was focused on strong opioids only. (3) The fidelity of intervention delivery was limited by the need for ongoing training and support. (4) Recruitment sites where clinical research nurse support was not secured had lower recruitment rates. (5) The process for recording withdrawal was not sufficiently detailed. (6) The number of follow-up visits was considered burdensome for some participants. (7) The feasibility trial did not have a control arm or assess randomisation processes. CONCLUSIONS: A future randomised controlled trial is feasible and acceptable. STUDY AND TRIAL REGISTRATION: This study is registered as PROSPERO CRD42014013572; Current Controlled Trials ISRCTN35327119; and National Institute for Health Research (NIHR) Portfolio registration 162114. FUNDING: The NIHR Health Technology Assessment programme.


Assuntos
Dor , Autogestão , Assistência Terminal/métodos , Idoso , Analgésicos Opioides/uso terapêutico , Cuidadores/psicologia , Estudos de Viabilidade , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Dor/tratamento farmacológico , Manejo da Dor/métodos , Inquéritos e Questionários
17.
Pediatr Pulmonol ; 52(4): 430-442, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27717193

RESUMO

BACKGROUND: Many adolescents have poor asthma control and impaired quality of life despite the availability of modern pharmacotherapy. Research suggests that poor adherence to treatment and limited engagement in self-management could be contributing factors. OBJECTIVE: To conduct a systematic review of the barriers and facilitators to self-management of asthma reported by adolescents using a narrative synthesis approach to integrate the findings. DESIGN: MEDLINE, EMBASE, CINAHL, and PsycINFO were searched for all types of study design. Full papers were retrieved for study abstracts that included data from participants aged 12-18 years referring to barriers or facilitators of asthma self-management behaviors. RESULTS: Sixteen studies (5 quantitative and 11 qualitative) underwent data extraction, quality appraisal, and thematic analysis. Six key themes were generated that encompassed barriers and/or facilitators to self-management of asthma in adolescents: Knowledge, Lifestyle, Beliefs and Attitudes, Relationships, Intrapersonal Characteristics, and Communication. CONCLUSIONS: There is a pressing need to prepare adolescents for self-management, using age-appropriate strategies that draw on the evidence we have synthesized. Current clinical practice should focus on ensuring adolescents have the correct knowledge, beliefs, and positive attitude to self-manage their illness. This needs to be delivered in a supportive environment that facilitates two-way communication, fosters adolescents' self-efficacy to manage their disease, and considers the wider social influences that impinge on self-management. Pediatr Pulmonol. 2017;52:430-442. © 2016 Wiley Periodicals, Inc.


Assuntos
Comportamento do Adolescente , Asma/terapia , Qualidade de Vida , Autocuidado , Adolescente , Asma/psicologia , Criança , Humanos , Entrevistas como Assunto
18.
Psychooncology ; 26(8): 1140-1146, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-27718527

RESUMO

BACKGROUND: There are more than 1500 UK health helplines in operation, yet we have scant knowledge about the resources in place to support the seeking and delivering of cancer-related telephone help and support. This research aimed to identify and describe cancer and cancer-related helpline service provision: the number of helplines available, the variety of services provided, and the accessibility of those services. METHOD: This study used online national questionnaire survey sent to 95 cancer and cancer-related helplines in the United Kingdom. RESULTS: A total of 69 (73%) of 95 surveyed cancer and cancer-related helplines completed the survey. Most helplines/organizations were registered charities, supported by donations; 73.5% of helplines had national coverage. Most helplines served all age-groups, ethnic groups, and men and women. Only 13.4% had a number that was free from landlines and most mobile networks, and 56.6% could only be contacted during working hours. More than 50% of helplines reported no provisions for callers with additional needs, and 55% had no clinical staff available to callers. Ongoing support and training for helpline staff was available but variable. CONCLUSION: Although cancer helplines in the United Kingdom offer reasonably broad coverage across the country, there are still potential barriers to accessibility. There are also opportunities to optimize the training of staff/volunteers across the sector. There are further prospects for helplines to enhance services and sustain appropriate and realistic quality standards.


Assuntos
Aconselhamento/estatística & dados numéricos , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Linhas Diretas/estatística & dados numéricos , Neoplasias/psicologia , Neoplasias/terapia , Educação de Pacientes como Assunto/estatística & dados numéricos , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Telefone/estatística & dados numéricos , Reino Unido , Voluntários
19.
BMJ Support Palliat Care ; 6(3): 263-75, 2016 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-27150294

RESUMO

BACKGROUND: Family carers play a significant role in managing pain and associated medicines for people with advanced cancer. Research indicates that carers often feel inadequately prepared for the tasks involved, which may impact on carers' and patients' emotional state as well as the achievement of optimal pain control. However, little is known about effective methods of supporting family carers with cancer pain medicines. AIMS: To systematically identify and review studies of interventions to help carers manage medicines for pain in advanced cancer. To identify implications for practice and research. METHOD: A systematic literature search of databases (MEDLINE, CINAHL, PsycINFO and AMED) was carried out to identify studies of pain medication management interventions that involved family carers of patients with advanced cancer, and reported specific outcomes for family carers. Patient pain outcomes were also sought. Studies were quality appraised; key aspects of study design, interventions and outcomes were compared and a narrative synthesis of findings developed. RESULTS: 8 studies were included; all had significant methodological limitations. The majority reported improvements in family carer knowledge and/or self-efficacy for managing pain medicines; no effect on patient pain outcomes; and no adverse effects. It was not possible to discern any association between particular intervention characteristics and family carer outcomes. CONCLUSIONS: Current evidence is limited, but overall suggests face-to-face educational interventions supported by written and/or other resources have potential to improve carers' knowledge and self-efficacy for pain management. Further research is needed to identify how best to help family carers manage pain medicines for patients with advanced cancer.


Assuntos
Dor do Câncer/tratamento farmacológico , Cuidadores , Conduta do Tratamento Medicamentoso , Educação em Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos
20.
PLoS One ; 10(7): e0130990, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26162086

RESUMO

INTRODUCTION: Self-management has received growing attention as an effective approach for long-term condition management. Little is known about which outcomes of supported self-management are valued by patients, their families, health professionals and those who commission self-management services. This study systematically reviewed published empirical evidence in accordance with PRISMA guidelines to determine the outcomes of self-management valued by these key stakeholder groups, using three prominent exemplar conditions: colorectal cancer, diabetes and stroke. AIM: To systematically review the literature to identify which generic outcomes of self-management have been targeted and are considered important using three exemplar conditions (colorectal cancer, diabetes and stroke), which collectively have a range of features that are likely to be representative of generic self-management issues. METHODS: Systematic searching of nine electronic databases was conducted in addition to hand searches of review articles. Abstracts were identified against inclusion criteria and appraised independently by two reviewers, using a critical appraisal tool. Synthesis of findings was conducted using mixed research synthesis. RESULTS: Over 20,536 abstracts were screened. 41 studies which met the review criteria were fully retrieved and appraised. The majority of evidence related to diabetes. Few studies directly focussed on stakeholders' views concerning desired self-management outcomes; the majority of evidence was derived from studies focusing upon the experience of self-management. The views of health care commissioners were absent from the literature. We identified that self-management outcomes embrace a range of indicators, from knowledge, skills, and bio-psychosocial markers of health through to positive social networks. CONCLUSIONS: Patients', families', health professionals' and commissioners' views regarding which outcomes of self-management are important have not been clearly elicited. The extent to which bio-psychosocial indicators relate to successful self-management from the perspectives of all groups of stakeholders is unknown. Further investigation regarding which self-management outcomes are considered important by all stakeholders is necessary to guide the commissioning and design of future self-management services.


Assuntos
Neoplasias Colorretais/terapia , Diabetes Mellitus/terapia , Autocuidado/métodos , Acidente Vascular Cerebral/terapia , Família/psicologia , Feminino , Pessoal de Saúde/psicologia , Humanos , Masculino , Avaliação de Resultados em Cuidados de Saúde/métodos , Autocuidado/psicologia
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