Recommendations for services for people living with chronic breathlessness in advanced disease: Results of a transparent expert consultation.
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ABSTRACT:
SUBMITTER: Brighton LJ
PROVIDER: S-EPMC6313262 | biostudies-literature | 2019 Jan-Dec
REPOSITORIES: biostudies-literature
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Recommendations for services for people living with chronic breathlessness in advanced disease: Results of a transparent expert consultation.
Brighton Lisa Jane LJ Tunnard India I Farquhar Morag M Booth Sara S Miller Sophie S Yi Deokhee D Gao Wei W Bajwah Sabrina S Man William Dc WD Reilly Charles C CC Ogden Margaret M Bailey Sylvia S Ewart Colleen C Higginson Irene J IJ Maddocks Matthew M
Chronic respiratory disease 20190101
Chronic breathlessness is highly distressing for people with advanced disease and their informal carers, yet health services for this group remain highly heterogeneous. We aimed to generate evidence-based stakeholder-endorsed recommendations for practice, policy and research concerning services for people with advanced disease and chronic breathlessness. We used transparent expert consultation, comprising modified nominal group technique during a stakeholder workshop, and an online consensus sur ...[more]
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Project description:Advanced respiratory disease imposes a greater symptom burden than many cancers but not does have comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with advanced respiratory disease (and those closest to them) have a poor quality of life, disabled by chronic breathlessness, fatigue and other symptoms. They are socially isolated by the consequences of long-term illness and are often financially impoverished. The past decade has seen an increasing realisation that care for this group must improve and that symptom management must be prioritised. Clinical guidelines recommend person-centred care, including access to supportive and palliative care as needed, as part of standard medical practice. Advanced lung disease clinics and specialist breathlessness services (pioneered within palliative care) are developing within respiratory medicine services but are provided inconsistently. This review covers the comprehensive assessment of the patient with advanced respiratory disease, the importance of supporting carers and the current best practice in the management of breathlessness, fatigue and cough. It also suggests ways to incorporate person-centred care into the general respiratory clinic, assisted by better liaison with specialist palliative and primary care. Emerging evidence shows that excellent symptom management leads to better clinical outcomes and reduces inappropriate use of emergency medical services. Key points:People living with advanced respiratory disease and severe chronic breathlessness (and those closest to them) have a poor quality of life.Chronic breathlessness is a disabling symptom, and acute-on-chronic/episodic breathlessness is frightening to experience and observe.Chronic breathlessness imposes profound physical limitations and psychosocial burdens on those suffering from it or living with someone experiencing it.Fatigue and cough are two other cardinal symptoms of advanced respiratory disease, with very detrimental effects on quality of life.The impact of all these symptoms can be alleviated to a variable extent by a predominantly non-drug complex intervention.Many of the interventions are delivered primarily by allied health or nursing professionals.Doctors, nurses and other health professionals also need to play an active part in promoting quality of life as part of excellent medical care.A person-centred, psychologically informed approach is needed by all clinicians treating patients with advanced respiratory disease. Educational aims:To give specialist respiratory clinicians practical clinical tools to help improve the quality of life of their patients with advanced respiratory disease and chronic breathlessness.To outline the evidence base for these interventions with reference to definitive sources.To highlight the importance of person-centred care in people with respiratory disease at all stages of illness.
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Project description:The London Chest Activities of Daily Living Scale measures the impact of breathlessness on both activity and social functioning. However, the London Chest Activities of Daily Living Scale is not routinely used in patients with advanced disease.To assess the psychometric properties of the London Chest Activities of Daily Living Scale in patients with refractory breathlessness due to advanced disease.A cross-sectional secondary analysis of data from a randomised controlled parallel-group, pragmatic, single-blind fast-track trial (randomised controlled trial) investigating the effectiveness of an integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness, known as the Breathlessness Support Service (NCT01165034). All patients completed the following questionnaires: the London Chest Activities of Daily Living Scale, Chronic Respiratory Questionnaire, the Palliative care Outcome Scale, Palliative care Outcome Scale-symptoms, the Hospital Anxiety and Depression Scale and breathlessness measured on a numerical rating scale. Data quality, scaling assumptions, acceptability, internal consistency and construct validity of the London Chest Activities of Daily Living Scale were determined using standard psychometric approaches.Breathless patients with advanced malignant and non-malignant disease.A total of 88 patients were studied, primary diagnosis included; chronic obstructive pulmonary disease = 53, interstitial lung disease = 17, cancer = 18. Median (range) London Chest Activities of Daily Living Scale total score was 46.5 (14-67). No floor or ceiling effect was observed for the London Chest Activities of Daily Living Scale total score. Internal consistency was good, and Cronbach's alpha for the London Chest Activities of Daily Living Scale total score was 0.90. Construct validity was good with 13 out of 15 a priori hypotheses met.Psychometric analyses suggest that the London Chest Activities of Daily Living Scale is acceptable, reliable and valid in patients with advanced disease and refractory breathlessness.
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Project description:BackgroundThere is a need for a clear and actionable definition of maternal sepsis, in order to better assess the burden of this condition, trigger timely and effective treatment and allow comparisons across facilities and countries. The objective of this study was to review maternal sepsis definitions and identification criteria and to report on the results of an expert consultation to develop a new international definition of maternal sepsis.MethodsAll original and review articles and WHO documents, as well as clinical guidelines providing definitions and/or identification criteria of maternal sepsis were included. A multidisciplinary international panel of experts was surveyed through an online consultation in March-April 2016 on their opinion on the existing sepsis definitions, including new definition of sepsis proposed for the adult population (2016 Third International Consensus Definitions for Sepsis and Septic Shock) and importance of different criteria for identification of maternal sepsis. The definition was agreed using an iterative process in an expert face-to-face consensus development meeting convened by WHO and Jhpiego.ResultsStandardizing the definition of maternal sepsis and aligning it with the current understanding of sepsis in the adult population was considered a mandatory step to improve the assessment of the burden of maternal sepsis by the expert panel. The literature review and expert consultation resulted in a new WHO consensus definition "Maternal sepsis is a life-threatening condition defined as organ dysfunction resulting from infection during pregnancy, child-birth, post-abortion, or post-partum period". Plans are in progress to validate the new WHO definition of maternal sepsis in a large international population.ConclusionThe operationalization of the new maternal sepsis definition requires generation of a set of practical criteria to identify women with sepsis. These criteria should enable clinicians to focus on the timely initiation of actionable elements of care (administration of antimicrobials and fluids, support of vital organ functions, and referral) and improve maternal outcomes.
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Project description:Aims and objectivesTo identify research undertaken in the last decade addressing continence for people living with dementia (PLWD) in the community. To highlight gaps and develop recommendations for future research, taking into account the experiences and priorities of PLWD, caregivers and healthcare professionals.MethodsA critical review with an Expert Review Group (ERG) comprising researchers, PLWD and facing continence issues, caregivers and other professional stakeholders. Findings are reported in line with the COREQ and Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews checklists.BackgroundCaregivers rate the independent use of the toilet as the most important activity for PLWD to retain. However, in 2009 a review identified shortfalls in knowledge and praxis around promoting continence and managing incontinence for PLWD in the community. As absolute numbers of people with dementia are predicted to increase, it is imperative to examine whether these deficits have been addressed.ResultsOf 3,563 records identified, 57 full-text articles were reviewed. The ERG developed a conceptual model to summarise research evidence according to the extent of the challenge (neuropathology and clinicopathology, prevalence and incidence), gateways to continence services, effectiveness of interventions, outcomes and the potential influences of personal resources, socio-cultural factors and environmental contexts.ConclusionsResearch on (in)continence for PLWD in the community is under-developed and has not increased substantially over the last decade. ERG recommendations for future research included user involvement to identify appropriate quality indicators to assess the effectiveness of interventions.Relevance to clinical practiceThere is insufficient evidence on which to base decisions on continence care for PLWD in the community. Omission from continence care guidelines has the effect of marginalising and silencing this population. User involvement in clinical research and developing practice guidelines has the potential for positive systems change.
| S-EPMC9292568 | biostudies-literature
Project description:Although health issues are more common in people living alone than in those living with someone, research on the service use of people living alone has focused on older age groups. Based on large Finnish cross-sectional health survey (FinHealth 2017, n = 4686), we examined the difference in the use and assessment of health services between those living alone and those living with someone, and whether some sub-groups within those living alone use or perceive the use of health care services differently to those living with someone. The adjusted proportions, based on logistic regression models controlling for demographic variables and perceived health and mental health, showed that those living alone had seen a doctor in the past year less often (65.5%) than those not living alone (71.9%). People living alone had also less often had a health examination in the past 5 years (72.4%) than those not living alone (79.2%), and this proportion was particularly low within people living alone with high levels of depressive symptoms (59.0%) compared to lower levels (75.0%). Conclusively, among people living alone, those who suffer from depressive symptoms might be a potential group that does not receive the same levels of preventive care than others.
| S-EPMC8414606 | biostudies-literature
Project description:BackgroundInvolving adults lacking capacity (ALC) in research on end of life care (EoLC) or serious illness is important, but often omitted. We aimed to develop evidence-based guidance on how best to include individuals with impaired capacity nearing the end of life in research, by identifying the challenges and solutions for processes of consent across the capacity spectrum.MethodsMethods Of Researching End of Life Care_Capacity (MORECare_C) furthers the MORECare statement on research evaluating EoLC. We used simultaneous methods of systematic review and transparent expert consultation (TEC). The systematic review involved four electronic databases searches. The eligibility criteria identified studies involving adults with serious illness and impaired capacity, and methods for recruitment in research, implementing the research methods, and exploring public attitudes. The TEC involved stakeholder consultation to discuss and generate recommendations, and a Delphi survey and an expert 'think-tank' to explore consensus. We narratively synthesised the literature mapping processes of consent with recruitment outcomes, solutions, and challenges. We explored recommendation consensus using descriptive statistics. Synthesis of all the findings informed the guidance statement.ResultsOf the 5539 articles identified, 91 met eligibility. The studies encompassed people with dementia (27%) and in palliative care (18%). Seventy-five percent used observational designs. Studies on research methods (37 studies) focused on processes of proxy decision-making, advance consent, and deferred consent. Studies implementing research methods (30 studies) demonstrated the role of family members as both proxy decision-makers and supporting decision-making for the person with impaired capacity. The TEC involved 43 participants who generated 29 recommendations, with consensus that indicated. Key areas were the timeliness of the consent process and maximising an individual's decisional capacity. The think-tank (n = 19) refined equivocal recommendations including supporting proxy decision-makers, training practitioners, and incorporating legislative frameworks.ConclusionsThe MORECare_C statement details 20 solutions to recruit ALC nearing the EoL in research. The statement provides much needed guidance to enrol individuals with serious illness in research. Key is involving family members early and designing study procedures to accommodate variable and changeable levels of capacity. The statement demonstrates the ethical imperative and processes of recruiting adults across the capacity spectrum in varying populations and settings.
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Project description:BACKGROUND:Excessive wait times for specialist care pose a serious concern for many patients, leading to duplication of tests, patient anxiety, and poorer health outcomes. In response to this issue, many health care systems have begun implementing technological innovations designed to improve the referral-consultation process. Among these services is electronic consultation (eConsult), which connects primary care providers and specialists through a secure platform to facilitate discussion of patients' care. OBJECTIVE:This study aims to examine different eConsult services available worldwide and compare the strategies, barriers, and successes of their implementation in different health care contexts. METHODS:We conducted an environmental scan comprising 3 stages as follows: literature review; gray literature search; and targeted, semistructured key informant interviews. We searched MEDLINE and EMBASE (literature review) and Google (gray literature search). Upon completing the search, we generated a list of potential interview candidates from among the stakeholders identified. Potential participants included researchers, physicians, and decision makers. The maximum variation sampling was used to ensure sufficient breadth of participant experience. In addition, we conducted semistructured interviews by telephone using an interview guide based on the RE-AIM framework. Analyses of transcripts were conducted using a thematic synthesis approach. RESULTS:A total of 53 services emerged from the published and gray literature. Respondents from 10 services participated in telephonic interviews. The following 4 major themes emerged from the analysis: service structure; benefits of eConsult; implementation challenges; and implementation enablers. CONCLUSIONS:eConsult services have emerged in a variety of countries and health system contexts worldwide. Despite differences in structure, platform, and delivery of their services, respondents described similar barriers and enablers to the implementation and growth and reported improved access and high levels of satisfaction.
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Project description:BackgroundOnline health communities have given rise to a new e-service known as online medical consultations (OMCs), enabling remote interactions between physicians and patients. To address challenges, such as patient information overload and uneven distribution of physician visits, online health communities should develop OMC-oriented recommenders.ObjectiveWe aimed to comprehensively investigate what paradigms lead to the success of OMC-oriented recommendations.MethodsA literature search was conducted through e-databases, including PubMed, ACM Digital Library, Springer, and ScienceDirect, from January 2011 to December 2023. This review included all papers directly and indirectly related to the topic of health care-related recommendations for online services.ResultsThe search identified 611 articles, of which 26 (4.3%) met the inclusion criteria. Despite the growing academic interest in OMC recommendations, there remains a lack of consensus among researchers on the definition of e-service-oriented recommenders. The discussion highlighted 3 key factors influencing recommender success: features, algorithms, and metrics. It advocated for moving beyond traditional e-commerce-oriented recommenders to establish an innovative theoretical framework for e-service-oriented recommenders and addresses critical technical issues regarding 2-sided personalized recommendations.ConclusionsThis review underscores the essence of e-services, particularly in knowledge- and labor-intensive domains such as OMCs, where patients seek interpretable recommendations due to their lack of domain knowledge and physicians must balance their energy levels to avoid overworking. Our study's findings shed light on the importance of customizing e-service-oriented personalized recommendations to meet the distinct expectations of 2-sided users considering their cognitive abilities, decision-making perspectives, and preferences. To achieve this, a paradigm shift is essential to develop unique attributes and explore distinct content tailored for both parties involved.
| S-EPMC11322685 | biostudies-literature
Project description:PurposeHip fracture is common in older people - with prevalence even higher for people with dementia. Research often excludes people with dementia - especially those in the more advanced stages. Therefore, the most appropriate interventions remain unknown. The main aim of this study was to gain consensus about the core considerations needed to deliver a physical intervention for people with advanced dementia who fracture their hip. Materials and Methods: An expert consensus process was undertaken, using Nominal Group Technique, to explore the key considerations when delivering rehabilitation. Data collection was undertaken in January 2023 and involved an online group discussion followed by voting and off-line rating. Qualitative content analysis and quantitative analysis of consensus scoring was undertaken. An international group of seven highly specialised physiotherapists took part.Results59 statements were agreed following the process. Content analysis was used to categorise these statements according to the International Classification of Functioning, Disability and Health. Although consensus levels were high, there was disagreement in several areas.ConclusionThe statements provide an overarching understanding of the multidisciplinary expertise that is needed to effectively deliver rehabilitation interventions to this population. People with dementia require highly skilled and trained professionals, providing holistic and person-centred approaches to deliver rehabilitation interventions.IMPLICATIONS FOR REHABILITATIONThe expert consensus provides an overarching understanding of the multidisciplinary expertise that is needed to effectively deliver rehabilitation interventions to this population.Physiotherapy - or other interventions - cannot be used in isolation.People with dementia require highly skilled and trained professionals, providing holistic and person-centred approaches to deliver rehabilitation interventions.While our focus was on hip fracture, we suggest these statements can be used for people with advanced dementia with a variety of other conditions.
| S-EPMC11332403 | biostudies-literature
Project description:BackgroundLittle research attention has been given to understanding the lived experience of parents who access mental health services in the context of child anxiety disorders. This paper reports on findings specific to parents' lived experience of accessing services for their child living with anxiety and the recommendations they provided for improving access.MethodsWe used the qualitative research approach of hermeneutic phenomenology. The sample included 54 Canadian parents of youth living with an anxiety disorder. Parents took part in one semi-structured and one open-ended interview. We used a 4 staged data analysis process informed by van Manen's approach and Levesque and colleagues' framework of access to healthcare.ResultsThe majority of parents reported being female (85%), white (74%), and single parents (39%). Parents' ability to seek and obtain services was affected by not knowing when or where to access services, having to learn to navigate the system, limited availability of services, lack of timely services and interim supports, limited financial resources, and clinicians' dismissal of parental concerns and knowledge. Provider (ability to listen), parent (willingness to participate in therapy), child (same race/ethnicity as provider), and service characteristics (cultural sensitivity) influenced whether parents perceived services as approachable, acceptable, and appropriate. Parents' recommendations focused on: (1) improving the availability, timeliness, and coordination of services, (2) providing supports for parents and the child to facilitate obtaining care (education, interim supports), (3) improving communication with and among healthcare professionals, (4) the need to recognize parents' experience-based knowledge, and (5) encouraging parents to take care of themselves and advocate for their child.ConclusionsOur findings point to possible avenues (parents' ability, service characteristics) that can be targeted to improve service access. As experts on their situation, parents' recommendations highlight priority needs of relevance to health care professionals and policymakers.
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