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1.
Diabet Med ; 41(5): e15259, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38017616

RESUMO

OBJECTIVE: Standardised person-reported outcomes (PRO) data can contextualise clinical outcomes enabling precision diabetes monitoring and care. Comprehensive outcome sets can guide this process, but their implementation in routine diabetes care has remained challenging and unsuccessful at international level. We aimed to address this by developing a person-centred outcome set for Type 1 and Type 2 diabetes, using a methodology with prospects for increased implementability and sustainability in international health settings. METHODS: We used a three-round questionnaire-based Delphi study to reach consensus on the outcome set. We invited key stakeholders from 19 countries via purposive snowball sampling, namely people with diabetes (N = 94), healthcare professionals (N = 65), industry (N = 22) and health authorities (N = 3), to vote on the relevance and measurement frequency of 64 previously identified clinical and person-reported outcomes. Subsequent consensus meetings concluded the study. RESULTS: The list of preliminary outcomes was shortlisted via the consensus process to 46 outcomes (27 clinical outcomes and 19 PROs). Two main collection times were recommended: (1) linked to a medical visit (e.g. diabetes-specific well-being, symptoms and psychological health) and (2) annually (e.g. clinical data, general well-being and diabetes self management-related outcomes). CONCLUSIONS: PROs are often considered in a non-standardised way in routine diabetes care. We propose a person-centred outcome set for diabetes, specifically considering psychosocial and behavioural aspects, which was agreed by four international key stakeholder groups. It guides standardised collection of meaningful outcomes at scale, supporting individual and population level healthcare decision making. It will be implemented and tested in Europe as part of the H2O project.


Assuntos
Diabetes Mellitus Tipo 2 , Humanos , Diabetes Mellitus Tipo 2/terapia , Técnica Delphi , Consenso , Projetos de Pesquisa , Saúde Mental
2.
Reprod Biomed Online ; 48(6): 103850, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38582042

RESUMO

RESEARCH QUESTION: What are the views and experiences of patient and expert stakeholders on the positive and negative impacts of commercial influences on the provision of assisted reproductive technology (ART) services, and what are their suggestions for governance reforms? DESIGN: Semi-structured interviews were conducted with 31 ART industry experts from across Australia and New Zealand and 25 patients undergoing ART from metropolitan and regional Australia, between September 2020 and September 2021. Data were analysed using thematic analysis. RESULTS: Expert and patient participants considered that commercial forces influence the provision of ART in a number of positive ways - increasing sustainability, ensuring consistency in standards and providing patients with greater choice. Participants also considered commercial forces to have a number of negative impacts, including increased costs to government and patients; the excessive use of interventions that lack sufficient evidence to be considered part of standard care; inadequately informed consent (particularly with regard to financial information); and threats to patient-provider relationships and patient-centred care. Participants varied in whether they believed that professional self-regulation is sufficient. While recognizing the benefits of commercial investment in healthcare, many considered that regulatory reforms, as well as organizational cultural initiatives, are needed as means to ensure the primacy of patient well-being. CONCLUSIONS: The views expressed in this study should be systematically and critically examined to derive insights into how best to govern ART. These insights may also inform the design and delivery of other types of healthcare that are provided in the private sector.


Assuntos
Técnicas de Reprodução Assistida , Humanos , Técnicas de Reprodução Assistida/economia , Austrália , Feminino , Nova Zelândia , Masculino , Adulto , Atitude do Pessoal de Saúde
3.
J Sleep Res ; : e14213, 2024 May 21.
Artigo em Inglês | MEDLINE | ID: mdl-38773705

RESUMO

To assess the effectiveness of culturally and linguistically tailored, peer-delivered obstructive sleep apnea education and of social support to increase adherence to physician-recommended obstructive sleep apnea evaluation among blacks. In a two-arm randomised controlled trial, we ascertained the effectiveness of peer-delivered obstructive sleep apnea education in increasing obstructive sleep apnea evaluation among 319 blacks at risk of obstructive sleep apnea (intervention = 159 and control = 160); their average age was 47 ± 12.9 years, and 41% were male. Obstructive sleep apnea risk was assessed with the Apnea Risk Evaluation System questionnaire, administered in community venues. Participants in the intervention arm received tailored obstructive sleep apnea education during a 6 month period; those in the control arm received standard sleep and healthy lifestyle information. Analysis focussed on the effectiveness of peer-delivered obstructive sleep apnea education on adherence to obstructive sleep apnea evaluation, but also considered the role of psychosocial factors. The results showed no significant differences in baseline demographic and clinical measures when contrasting participants in the study arms. The adherence rates for home-based obstructive sleep apnea evaluation in the intervention and control arms were 45.9% and 45.6%, respectively. Overall, participants in both study arms (adherers) who underwent obstructive sleep apnea evaluations were likely to experience a greater level of social support (8.2 ± 2.4 vs. 7.3 ± 2.4; p = 0.06). Moreover, adherers showed greater psychosocial scores (i.e., Dysfunctional Beliefs and Attitudes about Sleep scale, Apnea Beliefs Scale (ABS) (and Apnea Knowledge) compared with non-adherers (6.0 ± 1.8 vs. 4.9 ± 2.2; p = 0.02; 77.0 ± 7.1 vs. 73.2 ± 7.4; p = 0.04, and 6.4 ± 3.1 vs. 7.6 ± 2.4; p = 0.06, respectively). The results of the present randomised controlled trial favoured a potential role of peer-based social support and psychosocial factors, associated with obstructive sleep apnea adherence behaviour.

4.
Br J Clin Pharmacol ; 90(5): 1344-1356, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38403776

RESUMO

AIM: Suboptimal self-management with controller inhalation therapy in asthma and COPD is frequently observed with poor treatment outcomes. The developed 'Respiratory Adherence Care Enhancer' (RACE) instrument identifies and addresses individual barriers to self-management with a theoretical underpinning. This study investigates the feasibility of pharmaceutical support with this instrument. METHODS: An implementation trial was conducted with asthma and COPD patients in 5 community pharmacies in the Netherlands. Patients were allocated to standard care or add-on support with the RACE instrument. Patients were invited to complete the RACE questionnaire at baseline, 5-week and 10-week follow-up. Barrier profiles were accessible for the intervention group with subsequent consultations at baseline and 5-weeks. Experiences were collected from patients and consultants with a questionnaire and reported findings. Primary endpoints focused on the acceptability, practicality and implementation process. Secondary endpoints included between-group differences in barrier and disease control outcomes from baseline at 10-weeks follow-up. RESULTS: In total, 84 patients were included; 48 were assigned to intervention and 36 to standard care. Patient satisfaction of support with the RACE instrument was high (71%). Patients felt motivated, reassured and more confident about their disease management. Consultants reported an increase in awareness of patient barriers. Patient recognition of barrier profiles was 83.9% (±12.9%). The barrier inhaler techniques decreased significantly for the intervention group at follow-up with odds ratio 0.30 (95% confidence interval, 0.10-0.91). No significant differences were observed for changes in number of barriers and disease control. CONCLUSION: Self-management support with the RACE instrument is feasible and appreciated, facilitating behaviour change with patient-centred pharmaceutical care in asthma and COPD.


Assuntos
Asma , Adesão à Medicação , Doença Pulmonar Obstrutiva Crônica , Autogestão , Humanos , Doença Pulmonar Obstrutiva Crônica/terapia , Doença Pulmonar Obstrutiva Crônica/tratamento farmacológico , Asma/tratamento farmacológico , Asma/terapia , Masculino , Feminino , Pessoa de Meia-Idade , Países Baixos , Idoso , Autogestão/métodos , Adesão à Medicação/estatística & dados numéricos , Inquéritos e Questionários , Administração por Inalação , Adulto , Satisfação do Paciente , Estudos de Viabilidade , Antiasmáticos/administração & dosagem , Antiasmáticos/uso terapêutico
5.
Br J Anaesth ; 132(4): 758-770, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38331658

RESUMO

BACKGROUND: Postoperative patient-centred outcome measures are essential to capture the patient's experience after surgery. Although a large number of pharmacologic opioid minimisation strategies (i.e. opioid alternatives) are used for patients undergoing surgery, it remains unclear which strategies are most promising in terms of patient-centred outcome improvements. This scoping review had two main objectives: (1) to map and describe evidence from clinical trials assessing the patient-centred effectiveness of pharmacologic intraoperative opioid minimisation strategies in adult surgical patients, and (2) to identify promising pharmacologic opioid minimisation strategies. METHODS: We searched MEDLINE, Embase, CENTRAL, Web of Science, and CINAHL databases from inception to February 2023. We included trials investigating the use of opioid minimisation strategies in adult surgical patients and reporting at least one patient-centred outcome. Study screening and data extraction were conducted independently by at least two reviewers. RESULTS: Of 24,842 citations screened for eligibility, 2803 trials assessed the effectiveness of intraoperative opioid minimisation strategies. Of these, 457 trials (67,060 participants) met eligibility criteria, reporting at least one patient-centred outcome. In the 107 trials that included a patient-centred primary outcome, patient wellbeing was the most frequently used domain (55 trials). Based on aggregate findings, dexmedetomidine, systemic lidocaine, and COX-2 inhibitors were promising strategies, while paracetamol, ketamine, and gabapentinoids were less promising. Almost half of the trials (253 trials) did not report a protocol or registration number. CONCLUSIONS: Researchers should prioritise and include patient-centred outcomes in the assessment of opioid minimisation strategy effectiveness. We identified three potentially promising pharmacologic intraoperative opioid minimisation strategies that should be further assessed through systematic reviews and multicentre trials. Findings from our scoping review may be influenced by selective outcome reporting bias. STUDY REGISTRATION: OSF - https://osf.io/7kea3.


Assuntos
Analgésicos Opioides , Lidocaína , Adulto , Humanos , Analgésicos Opioides/uso terapêutico , Avaliação de Resultados em Cuidados de Saúde
6.
Br J Anaesth ; 2024 Jul 16.
Artigo em Inglês | MEDLINE | ID: mdl-39019769

RESUMO

BACKGROUND: Dexmedetomidine is increasingly used for surgical patients requiring general anaesthesia. However, its effectiveness on patient-centred outcomes remains uncertain. Our main objective was to evaluate the patient-centred effectiveness of intraoperative dexmedetomidine for adult patients requiring surgery under general anaesthesia. METHODS: We conducted a systematic search of MEDLINE, Embase, CENTRAL, Web of Science, and CINAHL from inception to October 2023. Randomised controlled trials (RCTs) comparing intraoperative use of dexmedetomidine with placebo, opioid, or usual care in adult patients requiring surgery under general anaesthesia were included. Study selection, data extraction, and risk of bias assessment were performed by two reviewers independently. We synthesised data using a random-effects Bayesian regression framework to derive effect estimates and the probability of a clinically important effect. For continuous outcomes, we pooled instruments with similar constructs using standardised mean differences (SMDs) and converted SMDs and credible intervals (CrIs) to their original scale when appropriate. We assessed the certainty of evidence using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology. Our primary outcome was quality of recovery after surgery. To guide interpretation on the original scale, the Quality of Recovery-15 (QoR-15) instrument was used (range 0-150 points, minimally important difference [MID] of 6 points). RESULTS: We identified 49,069 citations, from which 44 RCTs involving 5904 participants were eligible. Intraoperative dexmedetomidine administration was associated with improvement in postoperative QoR-15 (mean difference 9, 95% CrI 4-14, n=21 RCTs, moderate certainty of evidence). We found 99% probability of any benefit and 88% probability of achieving the MID. There was a reduction in chronic pain incidence (odds ratio [OR] 0.42, 95% CrI 0.19-0.79, n=7 RCTs, low certainty of evidence). There was also increased risk of clinically significant hypotension (OR 1.98, 95% CrI 0.84-3.92, posterior probability of harm 94%, n=8 RCTs) and clinically significant bradycardia (OR 1.74, 95% CrI 0.93-3.34, posterior probability of harm 95%, n=10 RCTs), with very low certainty of evidence for both. There was limited evidence to inform other secondary patient-centred outcomes. CONCLUSIONS: Compared with placebo or standard of care, intraoperative dexmedetomidine likely results in meaningful improvement in the quality of recovery and chronic pain after surgery. However, it might increase clinically important bradycardia and hypotension. SYSTEMATIC REVIEW PROTOCOL: PROSPERO (CRD42023439896).

7.
Age Ageing ; 53(7)2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-39046117

RESUMO

Globally, more people are living into advanced old age, with age-associated frailty, disability and multimorbidity. Achieving equity for all ages necessitates adapting healthcare systems. Clinical practice guidelines (CPGs) have an important place in adapting evidence-based medicine and clinical care to reflect these changing needs. CPGs can facilitate better and more systematic care for older people. But they can also present a challenge to patient-centred care and shared decision-making when clinical and/or socioeconomic heterogeneity or personal priorities are not reflected in recommendations or in their application. Indeed, evidence is often lacking to enable this variability to be reflected in guidance. Evidence is more likely to be lacking about some sections of the population. Many older adults are at the intersection of many factors associated with exclusion from traditional clinical evidence sources with higher incidence of multimorbidity and disability compounded by poorer healthcare access and ultimately worse outcomes. We describe these challenges and illustrate how they can adversely affect CPG scope, the evidence available and its summation, the content of CPG recommendations and their patient-centred implementation. In all of this, we take older adults as our focus, but much of what we say will be applicable to other marginalised groups. Then, using the established process of formulating a CPG as a framework, we consider how these challenges can be mitigated, with particular attention to applicability and implementation. We consider why CPG recommendations on the same clinical areas may be inconsistent and describe approaches to ensuring that CPGs remain up to date.


Assuntos
Medicina Baseada em Evidências , Assistência Centrada no Paciente , Guias de Prática Clínica como Assunto , Humanos , Idoso , Assistência Centrada no Paciente/normas , Medicina Baseada em Evidências/normas , Multimorbidade , Envelhecimento , Fatores Etários , Idoso de 80 Anos ou mais
8.
Qual Life Res ; 2024 Jun 14.
Artigo em Inglês | MEDLINE | ID: mdl-38874698

RESUMO

BACKGROUND: The Measure Yourself Medical Outcome Profile (MYMOP) is an individualised tool designed for adults but used with children without any evidence of validation in this population. Individualised instruments are patient-specific rather than disease-specific and therefore can be applied across various health conditions. This study sought to adapt, and content validate the MYMOP for application in 7-11 year old children. METHODS: There were two main phases of the four iterations: expert consultation (three rounds) and interviews with child-parent pairs at the Outpatient clinics of a Children's Hospital. Thematic analysis was undertaken using an inductive, interpretative approach. RESULTS: Four paediatricians completed the first survey, five paediatricians participated in the focus group, and four paediatric health-related quality of life (HRQOL) research experts completed the second survey. Several changes were recommended to the MYMOP by the expert groups. Twenty-five children (17 general medicine, and 8 diabetes/endocrine clinic) aged 7-11 years completed the draft paediatric MYMOP (P-MYMOP) and were interviewed. Results demonstrated that the majority of participants were able to identify their own problems and activity limitations, and all participants understood the 7-point faces scale. Most parents and children perceived that the P-MYMOP would be useful to complete before clinic appointments. CONCLUSIONS: The P-MYMOP is the first content-validated generic individualised HRQOL measure for children 7-11 years old. Given that validation is an iterative process, further research to assess its feasibility, reliability, and construct validity is required.

9.
Palliat Med ; 38(4): 471-484, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38481003

RESUMO

BACKGROUND: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is limited. AIM: To identify the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures for children with life-limiting and life-threatening conditions. DESIGN: Cross-sectional qualitative semi-structured interview study with key stakeholders analysed using Framework analysis informed by the adapted-Consolidated Framework for Implementation Research. SETTING/PARTICIPANTS: A total of n = 26 children with life-limiting or life-threatening conditions, n = 40 parents/carers, n = 13 siblings and n = 15 health and social care professionals recruited from six hospitals and three children's hospices and n = 12 Commissioners of health services. RESULTS: All participants were supportive of future implementation of person-centred outcome measures into care. Anticipated benefits included: better understanding of patient and family priorities, improved communication and collaborative working between professionals and families and standardisation in data collection and reporting. Anticipated risks included increased workload for staff and measures not being used as intended. Implementation barriers included: acceptability and usability of outcome measures by children; burden and capacity of parents/carers regarding completion; privacy concerns; and language barriers. Implementation facilitators included designing measures using language that is meaningful to children and families, ensuring potential benefits of person-centred outcome measures are communicated to encourage 'buy-in' and administering measures with known and trusted professional. CONCLUSIONS: Implementation of person-centred outcome measures offer potential benefits for children with life-limiting and life-threatening conditions. Eight recommendations are made to maximise benefits and minimise risks in implementation.


Assuntos
Cuidadores , Cuidados Paliativos , Adulto , Criança , Humanos , Adolescente , Estudos Transversais , Pesquisa Qualitativa , Avaliação de Resultados em Cuidados de Saúde
10.
Palliat Med ; 38(2): 184-199, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38268061

RESUMO

BACKGROUND: Older people with severe frailty are nearing the end of life but their needs are often unknown and unmet. Systematic ways to capture and measure the needs of this group are required. Patient reported Outcome Measures (PROMs) & Patient reported Experience Measures (PREMs) are possible tools to assist this. AIM: To establish whether, and in what ways, the needs of older people living with severe frailty are represented within existing PROMs and PREMs and to examine the extent to which the measures have been validated with this patient group. DESIGN: The scoping review follows the method of Arksey and O'Malley. RESULTS: Seventeen papers from 9 countries meeting the inclusion criteria and 18 multi-dimensional measures were identified: 17 PROMs, and 1 PROM with PREM elements. Seven out of the 18 measures had evidence of being tested for validity with those with frailty. No measure was developed specifically for a frail population. Using the adapted framework of palliative need, five measures covered all five domains of palliative need (IPOS, ICECAP-SCM, PDI, WHOQOL-BREF, WHOQOL-OLD). The coverage of items within the domains varied between the measures. CONCLUSION: Existing PROMs and PREMs are not well designed for what we know about the needs of older people with severe frailty. Future research should firstly focus on adapting and validating the existing measures to ensure they are fit for purpose, and secondly on developing a better understanding of how measures are used to deliver/better person-centred care.


Assuntos
Fragilidade , Humanos , Idoso , Morte , Assistência Centrada no Paciente , Pacientes , Medidas de Resultados Relatados pelo Paciente
11.
BMC Pregnancy Childbirth ; 24(1): 359, 2024 May 14.
Artigo em Inglês | MEDLINE | ID: mdl-38745117

RESUMO

BACKGROUND: Respectful Maternal and Neonatal Care (RMNC) maintains and respects a pregnant person's dignity, privacy, informed choice, and confidentiality free from harm and mistreatment. It strives for a positive pregnancy and post-pregnancy care experiences for pregnant people and their families, avoiding any form of obstetric violence. Though RMNC is now widely accepted as a priority in obstetric care, there is a gap in resources and support tools for healthcare wproviders to clearly understand the issue and change long-established practices such as non-humanized caesarean sections. MSI Reproductive Choices (MSI) manages 31 maternities across 7 countries with a zero-tolerance approach towards disrespectful maternity care and obstetric violence. MSI developed and implemented a hybrid training package, which includes an online module and 1-day in-person workshop that allows healthcare providers to explore their beliefs and attitudes towards RMNC. It leverages methodologies used in Values-Clarification-Attitudes-Transformation (VCAT) workshops and behaviour change approaches. METHODS: The impact of this training intervention was measured from the healthcare providers' and patients' perspectives. Patient experience of (dis)respectful care was collected from a cross-sectional survey of antenatal and postnatal patients attending MSI maternities in Kenya and Tanzania before and following the RMNC training intervention. Healthcare providers completed pre- and post-workshop surveys at day 1, 90 and 180 to measure any changes in their knowledge, attitudes and perception of intended behaviours regarding RMNC. RESULTS: The results demonstrate that healthcare provider knowledge, attitudes and perceived RMNC practices can be improved with this training interventions. Patients also reported a more positive experience of their maternity care following the training. CONCLUSION: RMNC is a patient-centred care priority in all MSI maternities. The training bridges the gap in resources currently available to support changes in healthcare wproviders' attitudes and behaviours towards provision of RMNC. Ensuring health system infrastructure supports compassionate obstetric care represents only the first step towards ensuring RMNC. The results from the evaluation of this RMNC provider training intervention demonstrates how healthcare provider knowledge and attitudes may represent a bottleneck to ensuring RMNC that can be overcome using VCAT and behaviour change approaches.


Assuntos
Atitude do Pessoal de Saúde , Pessoal de Saúde , Respeito , Humanos , Quênia , Tanzânia , Feminino , Gravidez , Adulto , Estudos Transversais , Pessoal de Saúde/educação , Pessoal de Saúde/psicologia , Serviços de Saúde Materna/normas , Recém-Nascido , Relações Profissional-Paciente , Adulto Jovem
12.
Fam Pract ; 41(1): 50-59, 2024 Feb 28.
Artigo em Inglês | MEDLINE | ID: mdl-38206317

RESUMO

BACKGROUND: Shared decision making (SDM) is considered fundamental to person-centred care. However, applying SDM may be a challenge for residents in general practice, since it is a complex competence that requires the integration of knowledge and skills from several competency domains. OBJECTIVE: To support learning of SDM during medical residency, we aimed to gain insight in Dutch residents' observed and perceived SDM performance in general practice. METHODS: We evaluated residents' SDM performance from an observer, resident, and patient perspective. Consultations of first- and third-year residents were recorded. Trained observers used the validated Observing Patient Involvement (OPTION5) scale to assess observed SDM performance of residents in 98 actual recorded consultations. Perceived SDM performance was evaluated by residents and patients completing validated SDM questionnaires, supplemented with questions about (the context of) the consultation and perceived relevance of SDM immediately after the consultation. The data were analysed using descriptive statistics (mean, SD, minimums, and maximums) and explorative bivariate analyses. RESULTS: The residents' observed mean SDM performance was 19.1 (range, 0-100, SD = 10.9), mean resident self-reported SDM performance was 56.9 (range, 0-100, SD = 18.5), and mean patient-reported SDM performance was 73.3 (range, 0-100, SD = 26.8). We found a significant and positive correlation between observed SDM performance and residents' perceived relevance of SDM for the consultation (t = 4.571, P ≤ 0.001) and the duration of the consultation (r = 0.390, P ≤ 0.001). CONCLUSIONS: This study showed that there is room for increasing awareness of the potential incongruence between observed and perceived SDM performance during medical residency, in order to facilitate the implementation of SDM in clinical practice.


THE PROBLEM: Shared decision making is an important process in which healthcare professional and patient work together to reach a decision on how to solve a health problem. This decision should include patients' needs and what matters most to them. We investigated if consultations between general practitioners in training (i.e. residents) and their patients demonstrate shared decision making. The research methods: We asked the residents and patients to respond to questions on their experience of shared decision making right after the consultation. We recorded 98 consultations of residents with their patients. Two researchers rated to what extent residents demonstrated shared decision-making behaviours during these consultations. THE RESULTS: The patients reported more shared decision making than the residents (patients: 73 versus residents: 57 on a 0­100 scale). The researchers observed low levels of SDM during the consultations (19 on a 0­100 scale). Our conclusion: Residents should be aware that shared decision making does not yet frequently occur in practice. To improve the extent to which residents share decisions with their patients in general practice, residents should learn why, when, and how to involve patients in decision making during consultations.


Assuntos
Tomada de Decisão Compartilhada , Medicina Geral , Humanos , Medicina de Família e Comunidade , Autorrelato , Participação do Paciente , Tomada de Decisões
13.
Fam Pract ; 2024 Apr 19.
Artigo em Inglês | MEDLINE | ID: mdl-38641556

RESUMO

BACKGROUND: Many patients present to their family medicine clinic with more than one health concern, placing an increased demand on family physicians. Research into the average number of concerns per regular family medicine visit is limited. Recognition of the frequency that family physicians address more than one concern per visit and adapting practices accordingly is important for improving patient care. OBJECTIVE: To examine whether family physicians routinely address multiple different patient concerns during a single visit and if this is influenced by patient demographics. METHODS: This study was conducted at a multi-physician family medicine clinic in Regina, Saskatchewan, Canada. Five physicians contributed their 500 most recent charts, extending retrospectively from 1 June 2023, from in-person visits by patients over 18 years of age and billed as regular appointments without billed procedures. Each chart was reviewed for the number of concerns addressed in the visit. RESULTS: Fifty percent of visits addressed more than 1 concern (range = 1-8). A generalized linear mixed model using Poisson distribution showed certain physicians (incident rate ratio [IRR]: 1.192, 95% CI: 1.087-1.307, P < 0.001) and adults older than 65 years compared to adults less than 40 years (IRR 1.151, 95% CI: 1.069-1.239, P < 0.001) were more likely to present with multiple concerns, but patient sex was not a significant predictor. CONCLUSIONS: Family physicians routinely address more than one concern per visit. Standard visit length and billing practices should be adapted to reflect this complexity.

14.
Health Expect ; 27(3): e14105, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38879788

RESUMO

INTRODUCTION AND AIMS: Stroke survivors with aphasia (impaired language/communication) have poor outcomes and gaps in the clinical implementation of best practice contribute to this. Little is known, however, about speech pathologist perspectives on the touchpoints (key moments shaping experiences) in the clinical care pathway that have the greatest impact on service delivery nor how this varies by geographical location. We explored the experiences of speech pathologists who provide aphasia services to establish priorities for improvement and design. METHODS AND ANALYSIS: This is the initial experience gathering and priority identification stage of an experience-based co-design (EBCD) project. Speech pathologists were recruited from 21 geographically diverse Hospital and Health Services in Queensland, Australia. Speech pathologists working in acute, rehabilitation and community services shared positive and negative experiences of delivering aphasia care in interviews and focus groups. Experiential data were analysed using qualitative thematic analysis to determine touchpoints. Priorities for service design were identified using an adapted nominal group technique. RESULTS: Speech pathologists (n = 62) participated in 16 focus groups and nine interviews and shared 132 experiences of delivering aphasia care. Providing care in teams with poor awareness of the impacts of aphasia was identified as a key challenge, as poor patient-provider communication was perceived to increase risk of adverse outcomes for patients. Speech pathologists identified areas for improvement related to their own professional needs (e.g., greater access to clinical supervision); collaborative health care (e.g., better coordination and interdisciplinary care to increase therapy time); and the service context and environment (e.g., psychological services able to support diverse communication needs). CONCLUSIONS: Speech pathologist delivery of aphasia services could be improved through increased access to clinical supervision, opportunities for peer debriefing and interdisciplinary care. Priorities for service design varied by geographical location and included: education to support care transitions (remote areas), improved referral pathways and service linkage (regional areas) and dedicated aphasia staffing (metropolitan areas). PATIENT OR PUBLIC CONTRIBUTION: A consumer advisory committee comprising people with aphasia (n = 3, authors K.M., K.D. and B.A.), their significant others (n = 2, authors J.D. and P.M.), and a Cultural Capability Officer (author G.B.) guided this research. The team: (1) reviewed participant information; (2) co-designed surveys and workshop resources; (3) copresented research outcomes and contributed to publications. Research questions and study design (e.g., analysis methods and assessment measures) were developed by the research team (authors L.A., V.J.P., D.A.C. and S.J.W.).


Assuntos
Afasia , Grupos Focais , Pesquisa Qualitativa , Patologia da Fala e Linguagem , Humanos , Afasia/terapia , Queensland , Entrevistas como Assunto , Feminino , Masculino , Acidente Vascular Cerebral/terapia , Acidente Vascular Cerebral/complicações
15.
Health Expect ; 27(2): e14040, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38629481

RESUMO

BACKGROUND: Collaborations between patient organisations (POs) and the pharmaceutical industry can help identify and address the unmet needs of people living with a disease. In Alzheimer's disease (AD), the scale and complexity of the current unmet needs call for a broad and cross-sectoral collaboration, including people living with Alzheimer's (PLWA), their care partners and the wider research community. OBJECTIVE: This study aimed to describe learnings from the Finding Alzheimer's Solutions Together (F.A.S.T.) Council, a collaboration between POs and Roche, convened to better understand the unmet needs of PLWA and their care partners. RESULTS: 1. Learnings from the collaboration, including clarifying objectives and members' expectations upfront, and establishing a set of guiding values and engagement principles. 2. Insights and recommendations for improving care in AD, including a wide range of unmet needs and potential solutions, systematically captured throughout the PLWA journey. These have resulted in several published reports and other outcomes, including (1) 'Portraits of care', highlighting the role of care partners, and the impact of coronavirus disease 2019 on care; (2) Clinical trial guidebook, recommending how PLWA and care partner experience can be incorporated into trial design; (3) 'Commitments Catalogue', highlighting progress by governmental organisations in achieving their commitments; and (4) a report to guide policy on improving diversity, equity and inclusion in clinical trials. CONCLUSIONS: Close collaboration between POs and the pharmaceutical industry in AD can enable effective research, in which PLWA and care partners are engaged as 'experts through experience' to help identify key unmet needs and co-create solutions with the wider AD research community. This paper and the work undertaken by the F.A.S.T. Council may act as a blueprint for meaningful collaboration between POs and the pharmaceutical industry. PATIENT OR PUBLIC CONTRIBUTION: The paper reports the collaboration between POs, the F.A.S.T. Council and Roche to progress towards a future in which PLWA can live fulfilling lives with their disease managed well. CLINICAL TRIAL REGISTRATION: Not applicable.


Assuntos
Doença de Alzheimer , Humanos , Doença de Alzheimer/terapia , Aprendizagem , Melhoria de Qualidade , Ensaios Clínicos como Assunto
16.
Health Expect ; 27(2): e14003, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38444291

RESUMO

INTRODUCTION: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). METHODS: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co-researchers in the research team, various groups of YPCC were involved in decision-making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. RESULTS: Initially, the two co-researchers were involved in the roles of informer and co-thinker, but their decision-making power within the study increased over time. In the final stages of the study, the co-researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co-thinkers in all stages of the study. CONCLUSION: The PPI of two YPCCs as co-researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. PATIENT OR PUBLIC CONTRIBUTION: YPCC played a significant role in the present study. Two YPCC-who are also co-authors of this paper-were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session.


Assuntos
Comunicação , Pacientes , Humanos , Adolescente , Doença Crônica , Participação do Paciente , Pesquisadores
17.
Health Expect ; 27(2): e14030, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38549215

RESUMO

BACKGROUND: There is a need for better implementation of patient-centred (PC) communication and shared decision-making (SDM) in routine cancer care. OBJECTIVE: The aim of this study was to assess whether a programme to implement SDM in oncology had effects on PC communication in clinical encounters. DESIGN: This study constitutes a secondary analysis of data derived from an implementation trial applying a stepped wedge design that, among other strategies, incorporated training and coaching to enhance the PC communication skills of physicians. SETTING AND PARTICIPANTS: We analysed audio recordings of clinical encounters collected in three departments of a comprehensive cancer centre in Germany before and after rolling out the implementation programme. MAIN VARIABLES STUDIED: We assessed the PC communication skills of physicians. MAIN OUTCOME MEASURES: Each recording was rated by two researchers using the German version of the Four Habits Coding Scheme (4HCS), an observer-based measure of PC communication. Interrater reliability of the outcome measure was acceptable but moderate. Demographic data of patients participating in audio recordings were analysed. METHODS: Data were analysed using descriptive statistics and linear mixed-effects models. RESULTS: In total, 146 encounters, 74 before and 72 after implementation, were evaluated. The mean age of patients was 57.1 years (SD = 13.8), 70.3% were female, the largest portion of patients had medium formal education (32.4%) and were (self-) employed (37.8%). No statistically significant effect of the implementation programme on the physicians' PC communication skills was found. DISCUSSION: The results indicate that the investigated programme to implement SDM in oncology, including training and coaching, had no effects on PC communication in clinical encounters. These results are in contrast to other studies that report the effects of specific training or coaching on PC communication. Reasons for the lack of effect include the short duration of our training compared to other studies, limited reliability and moderate interrater reliability of the 4HCS scale, limited reach of the intervention programme as well as the inclusion of physicians regardless of their exposure to the interventions. CONCLUSION: Further research is needed to develop implementation strategies that improve physicians' PC communication skills. PATIENT CONTRIBUTION: Data on patients and clinical encounters with patients and physicians were analysed. There was no other patient or public involvement.


Assuntos
Tomada de Decisões , Médicos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Comunicação , Participação do Paciente , Reprodutibilidade dos Testes , Ensaios Clínicos Controlados Aleatórios como Assunto , Adulto , Idoso
18.
Health Expect ; 27(3): e14104, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38872453

RESUMO

INTRODUCTION: Over a fifth of pregnant women are living with multiple long-term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long-term health conditions around the time of pregnancy. METHODS: Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long-term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. RESULTS: Fifty-seven women and 51 healthcare professionals participated. Five themes were identified. Women with long-term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long-term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. CONCLUSION: Pregnant women with long-term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. PATIENT OR PUBLIC CONTRIBUTION: Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group.


Assuntos
Entrevistas como Assunto , Humanos , Feminino , Gravidez , Adulto , Reino Unido , Pesquisa Qualitativa , Múltiplas Afecções Crônicas/terapia , Gestantes/psicologia , Pessoal de Saúde/psicologia , Complicações na Gravidez
19.
BMC Public Health ; 24(1): 144, 2024 01 10.
Artigo em Inglês | MEDLINE | ID: mdl-38200544

RESUMO

BACKGROUND: Tuberculosis related deaths remain a priority globally. Despite advancements in TB care, access to quality care remains inequitable to the disadvantage of those in rural and urban informal settlements. The Awareness, Traditions, and Innovation in combating Tuberculosis (ATI TB) project incorporated active case finding (ACF), use of GeneXpert technology and decentralized services to improve TB care in Kajiado County. This study sought to establish the impact of the project as well as implementation lessons learnt during its tenure in Kajiado County, Kenya. METHODS: This evaluation adopted a mixed-methods approach with retrospective cohort analysis for the quantitative data and qualitative data sought through key informant interviews with 28 purposively sampled respondents. The qualitative data was analyzed thematically using Taguette while quantitative data was analyzed using R Software yielding descriptive statistics and measures of association. RESULTS: While the males were a minority among the presumptive cases (623; 46%), they were the majority (59.3%) among the confirmed TB cases. 70% of the confirmed cases were aged between 15 and 44 years; with those aged between 25- and 34-years being majority (30% of the cases). Majority of the confirmed cases within the project were from rural Kajiado West (79; 66.9%). Though 61% of the presumptive cases were through ACF, only 7% of these tested positive. Conversely, 13% of the self-referrals tested positive. 53% (66) of the positive cases with valid data were self-referrals while ACF accounted for 47% (58) of the positives. CONCLUSION: Continued capacity development among health workers, sustained and targeted sensitization and screening among vulnerable groups, strategic collaborations, alongside increased budgetary prioritization of health and TB care by government and partners, and government investments in Social Determinants of Health can ensure gains in TB care are sustained.


Assuntos
Altruísmo , Orçamentos , Masculino , Humanos , Adolescente , Adulto Jovem , Adulto , Quênia , Estudos Retrospectivos , Confiabilidade dos Dados
20.
Can J Anaesth ; 71(7): 1015-1022, 2024 07.
Artigo em Inglês | MEDLINE | ID: mdl-38459367

RESUMO

PURPOSE: The acceptability of waiver of consent for participation in clinical research in intensive care unit (ICU) settings is uncertain. We sought to survey the Canadian public to assess levels of support, comfort, and acceptability for waived consent for low-risk clinical trials. METHODS: We performed a prospective cross-sectional survey of the Canadian public aged 18 yr or older. The survey was conducted by Ipsos between 19 and 23 November 2020. The survey content was derived from a literature review and in consultation with a patient and family partnership committee. The survey focused on attitudes and beliefs on waived consent for participation in low-risk clinical trials in ICU settings. The survey contained 35 items focused on sociodemographics, general health status, participation in medical research, and levels of support and comfort with research and with waived consent. The survey used a case study of a low-risk clinical trial intervention in ICU patients. Analysis was descriptive. RESULTS: We included 2,000 participants, 38% of whom reported experience with ICU and 16% with medical research. Participation in medical research was more common among those with postsecondary education, those with chronic disease, and those who were employed in health care. Most (80%) would support a model of waived consent for low-risk clinical trials, citing medical benefits (36%) and low perceived risk (34%). Most (77%) were comfortable with personally participating in a low-risk clinical trial. Most (80%) believed waived consent approaches were acceptable. Half (52%) believed the waived consent process should provide information about the research and include the option of opting out. When asked whether participants should always give full informed consent, regardless of the practicality or level of risk, 74% and 72% agreed, respectively. CONCLUSIONS: There is public support for models of waived consent for participation in low-risk pragmatic clinical trials in ICU settings in Canada; however, this is not universal. This information can inform and guide education, ethics, policy, and legal discussion on consent models.


RéSUMé: OBJECTIF: L'acceptabilité de la renonciation au consentement pour la participation à la recherche clinique à l'unité de soins intensifs (USI) est incertaine. Nous avons cherché à sonder la population canadienne afin d'évaluer les niveaux de soutien, de confort et d'acceptabilité de la renonciation au consentement pour les études cliniques à faible risque. MéTHODE: Nous avons réalisé un sondage transversal prospectif auprès de la population canadienne âgée de 18 ans et plus. Le sondage a été réalisé par Ipsos entre le 19 et le 23 novembre 2020. Le contenu du sondage a été élaboré à partir d'une revue de la littérature et en consultation avec un comité de partenariat composé de patient·es et de familles. Le sondage portait sur les attitudes et les croyances à l'égard de la renonciation au consentement pour participer à des études cliniques à faible risque dans les unités de soins intensifs. Le sondage comportait 35 questions axées sur les données sociodémographiques, l'état de santé général, la participation à la recherche médicale et les niveaux de soutien et de confort à l'égard de la recherche et de la renonciation au consentement. Le sondage s'est appuyé sur une étude de cas d'une intervention d'étude clinique à faible risque chez des patient·es des soins intensifs. L'analyse était descriptive. RéSULTATS: Nous avons inclus 2000 personnes, dont 38 % ont déclaré avoir eu des expériences en soins intensifs et 16 % en recherche médicale. La participation à la recherche médicale était plus fréquente chez les personnes ayant fait des études postsecondaires, celles atteintes de maladies chroniques et celles qui travaillaient dans le domaine des soins de santé. La plupart d'entre elles (80 %) appuieraient un modèle de renonciation au consentement pour les études cliniques à faible risque, citant les avantages médicaux (36 %) et le faible risque perçu (34 %). La majorité des personnes répondantes (77 %) étaient à l'aise à l'idée de participer personnellement à une étude clinique à faible risque. La plupart d'entre elles (80 %) croyaient que les approches fondées sur la renonciation au consentement étaient acceptables. La moitié (52 %) estimaient que le processus de renonciation au consentement devrait fournir des renseignements sur la recherche et inclure la possibilité de se retirer. Lorsqu'on leur a demandé si les participant·es devraient toujours donner un consentement éclairé complet, quel que soit l'aspect pratique ou le niveau de risque, 74 % et 72 % ont répondu par l'affirmative, respectivement. CONCLUSION: Il y a un appui public pour les modèles de renonciation au consentement quant à la participation à des études cliniques pragmatiques à faible risque dans les unités de soins intensifs au Canada; cet appui n'est toutefois pas universel. Ces renseignements peuvent éclairer et orienter l'éducation, l'éthique, les politiques et les discussions juridiques sur les modèles de consentement.


Assuntos
Ensaios Clínicos como Assunto , Cuidados Críticos , Consentimento Livre e Esclarecido , Humanos , Canadá , Pessoa de Meia-Idade , Masculino , Adulto , Feminino , Estudos Transversais , Estudos Prospectivos , Inquéritos e Questionários , Idoso , Adolescente , Adulto Jovem , Unidades de Terapia Intensiva , Opinião Pública
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