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INTRODUCTION: The Rehabilitation EnAblement in CHronic Heart Failure in patients with Heart Failure (HF) with preserved ejection fraction (REACH-HFpEF) pilot trial is part of a research programme designed to develop and evaluate a facilitated, home-based, self-help rehabilitation intervention to improve self-care and quality of life (QoL) in heart failure patients and their caregivers. We will assess the feasibility of a definitive trial of the REACH-HF intervention in patients with HFpEF and their caregivers. The impact of the REACH-HF intervention on echocardiographic outcomes and bloodborne biomarkers will also be assessed. METHODS AND ANALYSIS: A single-centre parallel two-group randomised controlled trial (RCT) with 1:1 individual allocation to the REACH-HF intervention plus usual care (intervention) or usual care alone (control) in 50 HFpEF patients and their caregivers. The REACH-HF intervention comprises a REACH-HF manual with supplementary tools, delivered by trained facilitators over 12â weeks. A mixed methods approach will be used to assess estimation of recruitment and retention rates; fidelity of REACH-HF manual delivery; identification of barriers to participation and adherence to the intervention and study protocol; feasibility of data collection and outcome burden. We will assess the variance in study outcomes to inform a definitive study sample size and assess methods for the collection of resource use and intervention delivery cost data to develop the cost-effectiveness analyses framework for any future trial. Patient outcomes collected at baseline, 4 and 6â months include QoL, psychological well-being, exercise capacity, physical activity and HF-related hospitalisation. Caregiver outcomes will also be assessed, and a substudy will evaluate impact of the REACH-HF manual on resting global cardiovascular function and bloodborne biomarkers in HFpEF patients. ETHICS AND DISSEMINATION: The study is approved by the East of Scotland Research Ethics Service (Ref: 15/ES/0036). Findings will be disseminated via journals and presentations to clinicians, commissioners and service users. TRIAL REGISTRATION NUMBER: ISRCTN78539530; Pre-results .
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Exercício Físico , Insuficiência Cardíaca/reabilitação , Autocuidado , Volume Sistólico , Adolescente , Adulto , Cuidadores , Doença Crônica , Feminino , Humanos , Masculino , Projetos Piloto , Qualidade de Vida , Projetos de PesquisaRESUMO
INTRODUCTION: The Rehabilitation EnAblement in CHronic Heart Failure (REACH-HF) trial is part of a research programme designed to develop and evaluate a health professional facilitated, home-based, self-help rehabilitation intervention to improve self-care and health-related quality of life in people with heart failure and their caregivers. The trial will assess the clinical effectiveness and cost-effectiveness of the REACH-HF intervention in patients with systolic heart failure and impact on the outcomes of their caregivers. METHODS AND ANALYSIS: A parallel two group randomised controlled trial with 1:1 individual allocation to the REACH-HF intervention plus usual care (intervention group) or usual care alone (control group) in 216 patients with systolic heart failure (ejection fraction <45%) and their caregivers. The intervention comprises a self-help manual delivered by specially trained facilitators over a 12-week period. The primary outcome measure is patients' disease-specific health-related quality of life measured using the Minnesota Living with Heart Failure questionnaire at 12 months' follow-up. Secondary outcomes include survival and heart failure related hospitalisation, blood biomarkers, psychological well-being, exercise capacity, physical activity, other measures of quality of life, patient safety and the quality of life, psychological well-being and perceived burden of caregivers at 4, 6 and 12 months' follow-up. A process evaluation will assess fidelity of intervention delivery and explore potential mediators and moderators of changes in health-related quality of life in intervention and control group patients. Qualitative studies will describe patient and caregiver experiences of the intervention. An economic evaluation will estimate the cost-effectiveness of the REACH-HF intervention plus usual care versus usual care alone in patients with systolic heart failure. ETHICS AND DISSEMINATION: The study is approved by the North West-Lancaster Research Ethics Committee (ref 14/NW/1351). Findings will be disseminated via journals and presentations to publicise the research to clinicians, commissioners and service users. TRIAL REGISTRATION NUMBER: ISRCTN86234930; Pre-results.
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Insuficiência Cardíaca/reabilitação , Qualidade de Vida , Autocuidado/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Cuidadores , Doença Crônica , Protocolos Clínicos , Análise Custo-Benefício , Feminino , Seguimentos , Insuficiência Cardíaca/economia , Humanos , Masculino , Pessoa de Meia-Idade , Autocuidado/economia , Método Simples-Cego , Resultado do Tratamento , Reino Unido , Adulto JovemRESUMO
OBJECTIVE: To explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research. BACKGROUND: Internationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured. DESIGN: Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. SAMPLE: Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. FINDINGS: This study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards. CONCLUSIONS: This study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers guidance to researchers and members of the public involved in the PI process.
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Participação da Comunidade , Atenção à Saúde , Pesquisa , Atitude , Consenso , Técnica Delphi , Humanos , Fatores SociológicosRESUMO
OBJECTIVES: Patients and policy makers advocate that drug treatments should be individualised. However, the term is used in a variety of ways. We set out to identify the range of related terminology and concepts in the general field of individualisation, map out the relationships between these concepts and explore how patients' perspectives are considered. DESIGN: We consulted members of an established patient and public involvement group about their experience of medicine taking for long-term conditions and their ideas about individualisation. We then conducted a scoping review of the literature to explore how terms surrounding individualisation of drug treatment are used and defined in the literature, and to explore the extent to which patients' perspectives are represented, with a view to informing future recommendations as to how individualisation can be operationalised. METHODS: We identified relevant literature using a range of search strategies. Two researchers independently extracted definitions of terms using a template. Inductive and deductive methods were used to explore the data. RESULTS: Definitions were categorised according to the following themes: medical management; pharmacogenetics, the patient's perspective; interactions between the healthcare provider and patient and management of long-term conditions. CONCLUSIONS: Within the literature reviewed, the involvement of patients in the ongoing management of drug treatment was largely absent. We propose the use of a new term 'mutually agreed tailoring' (MAT). This describes the ongoing pharmacological management of conditions that incorporates patients' specific needs, experiences and existing strategies for using their medications, and the professionals' clinical judgement. This usually includes patients monitoring their symptoms and, with the support of the professional, making appropriate product, dose or timing adjustments as necessary. Our previous work suggests that many patients and doctors are successfully practising MAT, so we suggest that a formal description may facilitate wider utilisation of strategies that will improve patient outcomes.
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Doença Crônica/tratamento farmacológico , Gerenciamento Clínico , Participação do Paciente , Relações Médico-Paciente , Autocuidado , Humanos , FarmacogenéticaRESUMO
OBJECTIVE: There is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI. DESIGN: Mixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project. SETTING: The UK health and social care research community. PARTICIPANTS: Stakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review. RESULTS: We identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whether the purpose of PI in health and social care research is to bring about service change or generate new knowledge. There were large differences by group in the percentages endorsing the ethical justification for PI and the argument that PI equalises power imbalances. With regard to practical implementation of PI, research support infrastructures were reported as lacking. Participants reported shortcomings in the uptake and practice of PI. Embedding PI practice and evaluation in research study designs was seen as fundamental to strengthening the evidence base. CONCLUSIONS: Our findings highlight the extent to which PI is already embedded in research. However, they also highlight a need for 'best practice' standards to assist research teams to understand, implement and evaluate PI. These findings have been used in developing a Public Involvement Impact Assessment Framework (PiiAF), which offers guidance to researchers and members of the public involved in the PI process.
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Participação da Comunidade/métodos , Pesquisa sobre Serviços de Saúde , Valores Sociais , Pesquisa Participativa Baseada na Comunidade , Consenso , Técnica Delphi , Guias como Assunto , Pesquisa sobre Serviços de Saúde/métodos , Pesquisa sobre Serviços de Saúde/normas , Humanos , Reino UnidoRESUMO
OBJECTIVE: To explore doctors' understanding of individualisation of drug treatments, and identify the methods used to achieve individualisation. DESIGN: In this exploratory study, we used in-depth qualitative interviews with doctors to gain insight into their understanding of the term 'individualised treatments' and the methods that they use to achieve it. PARTICIPANTS: 16 general practitioners in 6 rural and 10 urban practices, 2 geriatricians and 2 clinical academics were recruited. SETTING: Primary and secondary care in South West of England. RESULTS: Understanding of individualisation varied between doctors, and their initial descriptions of individualisation were not always consistent with subsequent examples of the patients they had treated. Understandings of, and methods used to achieve, individualised treatment were frequently discussed in relation to making drug treatment decisions. Few doctors spoke of using strategies to support patients to individualise their own treatments after the consultation. CONCLUSIONS: Despite its widespread use, variation in doctors' understanding of the term individualisation highlights the need for it to be defined. Efforts are needed to develop effective methods that would offer a structured approach to support patients to manage their treatments after consultations.
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BACKGROUND: Methods for reviewing and synthesising findings from quantitative research studies in health care are well established. Although there is recognition of the need for qualitative research to be brought into the evidence base, there is no consensus about how this should be done and the methods for synthesising qualitative research are at a relatively early stage of development. OBJECTIVE: To evaluate meta-ethnography as a method for synthesising qualitative research studies in health and health care. METHODS: Two full syntheses of qualitative research studies were conducted between April 2002 and September 2004 using meta-ethnography: (1) studies of medicine-taking and (2) studies exploring patients' experiences of living with rheumatoid arthritis. Potentially relevant studies identified in multiple literature searches conducted in July and August 2002 (electronically and by hand) were appraised using a modified version of the Critical Appraisal Skills Programme questions for understanding qualitative research. Candidate papers were excluded on grounds of lack of relevance to the aims of the synthesis or because the work failed to employ qualitative methods of data collection and analysis. RESULTS: Thirty-eight studies were entered into the medicine-taking synthesis, one of which did not contribute to the final synthesis. The synthesis revealed a general caution about taking medicine, and that the practice of lay testing of medicines was widespread. People were found to take their medicine passively or actively or to reject it outright. Some, in particular clinical areas, were coerced into taking it. Those who actively accepted their medicine often modified the regimen prescribed by a doctor, without the doctor's knowledge. The synthesis concluded that people often do not take their medicines as prescribed because of concern about the medicines themselves. 'Resistance' emerged from the synthesis as a concept that best encapsulated the lay response to prescribed medicines. It was suggested that a policy focus should be on the problems associated with the medicines themselves and on evaluating the effectiveness of alternative treatments that some people use in preference to prescribed medicines. The synthesis of studies of lay experiences of living with rheumatoid arthritis began with 29 papers. Four could not be synthesised, leaving 25 papers (describing 22 studies) contributing to the final synthesis. Most of the papers were concerned with the everyday experience of living with rheumatoid arthritis. This synthesis did not produce significant new insights, probably because the early papers in the area were substantial and theoretically rich, and later papers were mostly confirmatory. In both topic areas, only a minority of the studies included in the syntheses were found to have referenced each other, suggesting that unnecessary replication had occurred. LIMITATIONS: We only evaluated meta-ethnography as a method for synthesising qualitative research, but there are other methods being employed. Further research is required to investigate how different methods of qualitative synthesis influence the outcome of the synthesis. CONCLUSIONS: Meta-ethnography is an effective method for synthesising qualitative research. The process of reciprocally translating the findings from each individual study into those from all the other studies in the synthesis, if applied rigorously, ensures that qualitative data can be combined. Following this essential process, the synthesis can then be expressed as a 'line of argument' that can be presented as text and in summary tables and diagrams or models. Meta-ethnography can produce significant new insights, but not all meta-ethnographic syntheses do so. Instead, some will identify fields in which saturation has been reached and in which no theoretical development has taken place for some time. Both outcomes are helpful in either moving research forward or avoiding wasted resources. Meta-ethnography is a highly interpretative method requiring considerable immersion in the individual studies to achieve a synthesis. It places substantial demands upon the synthesiser and requires a high degree of qualitative research skill. Meta-ethnography has great potential as a method of synthesis in qualitative health technology assessment but it is still evolving and cannot, at present, be regarded as a standardised approach capable of application in a routinised way. FUNDING: Funding for this study was provided by the Health Technology Assessment programme of the National Institute for Health Research.
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Antropologia Cultural/métodos , Pesquisa Biomédica/métodos , Pesquisa sobre Serviços de Saúde/métodos , Metanálise como Assunto , Pesquisa Qualitativa , Antropologia Cultural/normas , Artrite Reumatoide/tratamento farmacológico , Artrite Reumatoide/psicologia , Pesquisa Biomédica/normas , Bases de Dados Bibliográficas , Infecções por HIV/tratamento farmacológico , Infecções por HIV/psicologia , Pesquisa sobre Serviços de Saúde/normas , Humanos , Adesão à Medicação/psicologia , Variações Dependentes do Observador , Reprodutibilidade dos Testes , Perfil de Impacto da DoençaRESUMO
AIMS: The project aimed to describe the perceptions of consultant diabetologists about their work, explore models of care, identify problem areas, consider potential solutions, and outline strategic issues for retention and recruitment. METHODS: The study was based on semistructured qualitative interviews with 92 consultant diabetologists, recruited via a purposive sample. Interviews were recorded, transcribed and anonymized, and analysed by the project team, assisted by QSR Nvivo software. RESULTS: The consultant diabetologist role encompasses a diversity of skills/expertise, with differing emphases between individuals. Integration with general medicine is seen by some as crucial to maintaining proficiency in diabetes, and by others as hindering fulfilment of other roles. Successful team working across organizational boundaries is recognized as essential to effective services, but often impeded by the continuous reorganization and competitive culture of the National Health Service. Significant differences between consultant diabetologist perspectives of primary care colleagues and of primary care trusts emerged. Some consultants have adopted innovative working approaches, adapting national guidance to local environments, but there is general resistance to adopting centrally imposed solutions. Training programmes are not sufficiently explicit about the core skills/attributes required of consultant diabetologists. CONCLUSIONS: The skills of specialist teams are not fully exploited. Competing calls on time could be addressed by encouraging multifaceted consultant teams, allowing individuals to concentrate in specific areas. Clear definition of core skills required by consultant diabetologists underpins training programme development. Collaboration in cross-boundary services reflecting local needs is impeded by competition between sectors. Protected time is necessary for cultivating multidisciplinary teams, cross-boundary partnerships and effective, relevant education programmes. Specialist training must reflect the changing role of consultant diabetologists, and include role-specific programmes.
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Competência Clínica/normas , Consultores , Diabetes Mellitus/terapia , Satisfação no Emprego , Corpo Clínico Hospitalar/psicologia , Atitude do Pessoal de Saúde , Inglaterra , Feminino , Humanos , Relações Interprofissionais , Masculino , Medicina Estatal/normasRESUMO
BACKGROUND AND OBJECTIVES: Appropriateness of prescribing is often assessed by standard instruments. We wished to establish whether judgements of appropriateness that included patients' perspectives and contextual factors could lead to different conclusions when compared with commonly used instruments. To explore the predictive accuracy of these instruments. METHODS: The design was interviews of patients, audio recordings of the consultation and interviews of the doctors, in varied primary care practices in England. Participants were patients who were likely to discuss a medication issue. The outcome measures were judgements of appropriateness made by the researchers and by two instruments: the Prescribing Appropriateness Index and the Medication Appropriateness Index. Implications for the predictive accuracy of the measures was also investigated. RESULTS: From 35 cases there was agreement between the judges and the instruments in 22 cases, 16 were appropriate and 6 inappropriate. Of 10 cases classified as inappropriate by the instruments the judges thought four were appropriate. Of 18 cases classified as appropriate by the instruments, two were considered inappropriate by the judges. In seven cases the prescribing decisions could not be classified by the instruments because the decision was to not prescribe. CONCLUSIONS: Current measures of appropriateness of prescribing depend predominantly on pharmacological criteria, and so do not represent cases that would be judged appropriate when including the patient's views and contextual factors. If most prescribing is appropriate then use of these measures may lead to more false negatives than real negatives. The instruments should be renamed as measures of 'pharmacological appropriateness' and are useful where the incidence of this type of inappropriate prescribing is relatively high.
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Prescrições de Medicamentos , Uso de Medicamentos , Padrões de Prática Médica , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Inglaterra , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Relações Médico-Paciente , Atenção Primária à SaúdeRESUMO
OBJECTIVE: People who seek non-pharmaceutical interventions are often motivated by a desire to avoid or reduce orthodox medication. Effectiveness research in these areas needs to measure change in medication as an outcome. We set out to develop a data collection tool that is sensitive to changes in individual drug use over time. METHOD: A multi-disciplinary team designed, piloted, and revised the Medication Change Questionnaire (MCQ) on two occasions, and used qualitative interviews to understand the patient's perspective and ensure that the final product accurately reflected the medication that patients were taking. Thirty patients in one general practice completed the questionnaire on two occasions and a purposive sample of 14 were interviewed. The design sought to enable patients to record all their ingested medication accurately, both prescription and over-the-counter drugs, over a period of 7 days. It was designed to be administered face-to face on the first occasion, and to be self-completed on subsequent occasions. RESULTS: In considering in detail what medication was taken each day, the interview data fully correlated with the MCQ data in only one of the five people who were interviewed after completing the first draft of the questionnaire, but in eight of the nine people who completed the second draft. Of these eight people all but one had made some change to their medication, either by stopping or starting a drug, varying the dose of a drug or always taking one or more drugs in varying doses. The interviews demonstrated the complex and individual ways that people took their medicines, and the disparity between what was prescribed and what was actually taken. The qualitative data were also useful for reflecting on the potential advantages and disadvantages of other data collection methods, such as single medication questions and pill counts. CONCLUSION: By involving patients at every level of research, we have developed a questionnaire that enables people to record their medication use accurately over a 7-day period, and to demonstrate changes in medication over time. Further work is required to assess its acceptability by different patient populations and its feasibility in terms of completion rates over longer periods of repeated use. We believe the MCQ to be an improvement over the variety of ad-hoc tools used in the past and it is freely available from the authors.
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Terapias Complementares/estatística & dados numéricos , Cooperação do Paciente/estatística & dados numéricos , Preparações Farmacêuticas/administração & dosagem , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Inquéritos e QuestionáriosRESUMO
Prescribing medicines is a cornerstone of medical practice. There is, however, ample evidence that the prescribing process is far from ideal when viewed from the perspective of patients who wish to understand why they should take medicine, what potential harm they might face, and how they might integrate medicine taking into the pattern of their life, beliefs, and attitudes. Misalignment between clinicians and patients about medicine taking leads to a multitude of problems. Recently, a concept known as concordance has been suggested, where the prescribing interaction is seen as a process where both the patient and professional views and beliefs about medication, and the associated harms and benefits, are shared and negotiated. This interaction depends on a communication process that is becoming known as shared decision making between clinicians and patients. Although there is as yet little evidence that this approach leads to improved clinical outcomes, ethical principles and the core values of medical practice suggest that involving patients in the prescribing process will lead to better, safer care.
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Atitude do Pessoal de Saúde , Prescrições de Medicamentos , Participação do Paciente/psicologia , Relações Médico-Paciente , Competência Clínica , Comunicação , Tomada de Decisões , Humanos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Filosofia MédicaRESUMO
OBJECTIVE: To explore the feasibility of using a broader definition of the appropriateness of prescribing in general practice by developing ways of measuring this broader definition and by identifying possible relationships between different aspects of appropriateness and patient outcomes. DESIGN: A questionnaire study of patients and general practitioners before and after study consultations, supplemented by data collected from patients' medical records and telephone interviews with patients 1 week later. SETTING: General practices in the south of England. PARTICIPANTS: 24 general practitioners and 186 of their consulting patients. MAIN OUTCOME MEASURES: Unwanted, unnecessary, and pharmacologically inappropriate prescriptions; patients' adherence. RESULTS: Before the consultation 42% of patients said they wanted or expected a prescription for their main problem. Prescriptions were written in two thirds (65%) of study consultations, and 7% of these had not been wanted or expected beforehand. Doctors recorded that one in five prescriptions they wrote were not strictly indicated. Of the 92 independent assessments of these prescriptions, four were judged to be inappropriate and in 19 cases the assessors were uncertain. 41% of prescriptions written were wanted, necessary, and appropriate. Subsequently, 18% of patients for whom a prescription had been written were potentially non-adherent and 25% had worries or concerns about their medication. CONCLUSION: The attempt to measure appropriateness of prescribing along the three dimensions of patients', prescribers', and pharmacological perspectives is both feasible and likely to yield valuable insights into the nature of general practice prescribing and patients' use of medicines.
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Prescrições de Medicamentos , Revisão de Uso de Medicamentos , Medicina de Família e Comunidade/normas , Padrões de Prática Médica , Inglaterra , Mau Uso de Serviços de Saúde , Pesquisa sobre Serviços de Saúde , Humanos , Cooperação do Paciente , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: For people with dyspepsia who are receiving orthodox general practice care, what is the effect on outcome and on NHS costs of adding treatment by a choice of acupuncture or homeopathy? This paper describes and reflects upon a pilot study with user involvement. DESIGN: A randomised pilot study. Patients chose between acupuncture and homeopathy and were then randomised to this preference or to the control group of normal GP care. SETTING AND PARTICIPANTS: Sixty people with dyspepsia (>/=2 weeks) presenting in one UK general practice were recruited in consultations and by letter to those on repeat prescriptions. There were few exclusion criteria. The homeopath and the acupuncturist treated the patient individually according to their normal practice for up to 6 months. After the trial there was a focus group for participants. OUTCOME MEASURES: SF-36 health survey, Measure Yourself Medical Outcome Profile (MYMOP), and General Well-being Index (GWBI). Counts of prescriptions, consultations and referrals from practice computer records. RESULTS: No trend or significant difference between the groups for clinical outcome or NHS costs. Major costs for the 6 months, mean (S.D.) cost per patient, were general practitioner consultations pound 8 (18), prescriptions pound 64 (73), acupuncture pound 175 (52), homeopathy pound 105 (33). Participants gave insights and suggestions which will inform the full trial design. CONCLUSIONS: Reflection on the pilot study data and experience by participants, treating practitioners and researchers led to modifications in the design and a sample size calculation. How to demonstrate individual responses to treatment remains a problem.
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Terapia por Acupuntura , Dispepsia/terapia , Homeopatia , Adulto , Idoso , Idoso de 80 Anos ou mais , Dispepsia/economia , Feminino , Indicadores Básicos de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Projetos Piloto , Resultado do TratamentoRESUMO
OBJECTIVE: To examine factors associated with uptake of HIV clinic services by black African HIV positive people living in London. DESIGN: Questionnaire survey of patients attending study clinic. SETTING: HIV outpatient clinic in south London, UK. SUBJECTS: All HIV positive patients attending the clinic between July 1999 and March 2000. MAIN OUTCOME MEASURES: Use of health services, delay in seeking HIV test, pre-HIV test concerns, delay in uptake of HIV care, barriers to clinic use, disclosure, sources of support. RESULTS: 392 questionnaires were completed. Respondents were 64% white, 26% black African, and 10% from other ethnic groups. Twenty eight per cent of black Africans suspected they were HIV positive before diagnosis (white patients 45% (p<0.01)). Before testing 11% of black Africans had previously attended a genitourinary medicine clinic, 80% had consulted a GP. Twenty per cent of black Africans expressed concern over entitlement to care and where to get an HIV test. The majority of black Africans (66%) received HIV care within 1 month of their diagnosis. They were significantly (p<0.01) less likely than white patients to disclose their HIV status to family and friends. CONCLUSION: This study suggests that although black Africans are a high risk group for HIV infection they generally do not suspect their status. While they may delay testing, their uptake of HIV clinic care and use of statutory and voluntary support services after diagnosis is similar to their white counterparts. However, they lack informal support networks. This study highlights the continuing need for health promotion work among London's African communities, to reduce the stigma surrounding HIV/AIDS and to raise awareness of the benefits of testing.
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Infecções por HIV/diagnóstico , Aceitação pelo Paciente de Cuidados de Saúde/etnologia , Adulto , África/etnologia , Assistência Ambulatorial/estatística & dados numéricos , Feminino , Infecções por HIV/etnologia , Humanos , Londres/epidemiologia , Masculino , Pessoa de Meia-Idade , Fatores de RiscoRESUMO
The objective of this study was to investigate the extent of non-adherence to prescribed antibiotics and the relationship of non-adherence to consultation and attitudinal factors. Self-completion postal questionnaires were sent to 202 consecutive adult attenders to an accident and emergency (A&E) department who had been given antibiotics to take home, within a week of the A&E attendance. The questionnaire included a detailed log of dosing, two sections of eight questions each on the patients' perceptions of the consultation and of their attitudes to medicines in general, which were marked on Likert scales; and questions inviting free text answers. Efforts were made to maximize the response rate, and to contact a random sample of 10 non-responders to assess any non-response bias. The response rate was 56%. The non-responders sampled reported similar non-adherence to that of the responders. Of the 113 responders, 10 (9%) indicated that they had taken none of their prescribed medicines, and 25 (22%) that they had taken less than 80%. The most common pattern of non-adherence was early cessation. Two aspects of the consultation (expectations about a prescription, and that there were too many tablets) were related to adherence. In conclusion, this study suggests that the effectiveness of some A&E consultations is reduced by inadequate exploration of patients' concerns and expectations.
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Antibacterianos/administração & dosagem , Conhecimentos, Atitudes e Prática em Saúde , Cooperação do Paciente , Adolescente , Adulto , Idoso , Prescrições de Medicamentos , Serviço Hospitalar de Emergência , Hospitais Gerais , Hospitais Urbanos , Humanos , Londres , Pessoa de Meia-Idade , Cooperação do Paciente/psicologia , Relações Médico-Paciente , Autoadministração , Inquéritos e QuestionáriosRESUMO
Mishler (The discourse of medicine. The dialectics of medical interviews. Norwood, NJ: Ablex), applying Habermas's theory of Communicative Action to medical encounters. showed how the struggle between the voice of medicine and the voice of the lifeworld fragmented and suppressed patients' multi-faceted, contextualised and meaningful accounts. This paper investigates and critiques Mishler's premise that this results in inhumane, ineffective medical care. Using a more complex data collection strategy, comprising patient interviews, doctor interviews and transcribed consultations we show more complex relations than emerged from Mishler's analysis. We found four communication patterns across 35 general practice case studies. When doctor and patient both used the voice of medicine exclusively (acute physical complaints) this worked for simple unitary problems (Strictly Medicine). When both doctor and patient engaged with the lifeworld, more of the agenda was voiced (Mutual Lifeworld) and patients were recognised as unique human beings (psychological plus physical problems). Poorest outcomes occurred where patients used the voice of the lifeworld but were ignored (Lifeworld Ignored) or blocked (Lifeworld Blocked) by doctors' use of voice of medicine (chronic physical complaints). The analysis supports the premise that increased use of the lifeworld makes for better outcomes and more humane treatment of patients as unique human beings. Some doctors switched communication strategies in different consultations, which suggests that their behaviour might be open to change. If doctors could be sensitised to the importance of dealing with the concerns of the lifeworld for patients with chronic physical conditions as well as psychological conditions, it might be possible to obtain better care for patients. This would require attention to structural aspects of the healthcare system to enable doctors to work fully within the patient-centred model.
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Comunicação , Medicina de Família e Comunidade , Participação do Paciente , Relações Médico-Paciente , Adulto , Idoso , Feminino , Saúde Holística , Humanos , Masculino , Anamnese , Pessoa de Meia-Idade , Assistência Centrada no PacienteRESUMO
BACKGROUND: Patients often find it difficult to discuss their medications fully with their prescribing doctor. Little is known about what might be said about medications to another professional within the primary health care team (PHCT). Pharmacists are seeking to extend their role within primary care and are ideally placed to provide independent medication advice. OBJECTIVE: Our aim was to test the feasibility of using primary care pharmacists as medication counsellors, and to analyse the content of their consultations using qualitative methods. METHOD: Some patients were referred by their doctors, some self-referred and others were invited by the pharmacists for medication reviews. Pharmacist-patient consultations took place within GP surgeries and in patients' homes, and were audiotaped, transcribed and analysed qualitatively. The study sample consisted of 25 consultations with three primary care pharmacists conducted over a 3-month period. RESULTS: Referrals from the doctors were slow and there were no referrals from nurses. The pharmacists, who all had clinical backgrounds and were not dispensing pharmacists, experienced few problems with the consultations. Patients were willing to discuss their medications in detail with the pharmacists. A theme emerged regarding the perceived potency of medications, and this seemed to have an effect on the experience of side effects and the perceived efficacy of the medications. CONCLUSIONS: From this small study, it would seem that pharmacist consultations within primary care are a feasible extension of their current role as prescribing budget advisors. The richness of the consultations reflects the acceptability to patients. Feedback of information to other members of the PHCT, given patient consent, would be very useful for a better understanding of the patient's perspective, which in turn would facilitate concordance in the negotiation of the patient's management.