Incidence of adult Huntington's disease in the UK: a UK-based primary care study and a systematic review.
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ABSTRACT:
SUBMITTER: Wexler NS
PROVIDER: S-EPMC4769413 | biostudies-other | 2016 Feb
REPOSITORIES: biostudies-other
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Project description:OBJECTIVES:We describe temporal trends in the recorded incidence of inflammatory bowel disease (IBD) in UK primary care patients between 2000 and 2018. DESIGN:A cohort study. SETTING:The IQVIA Medical Research data (IMRD) primary care database. PARTICIPANTS:All individuals registered with general practices contributing to IMRD during the period 01 January 2000-31 December 2018. MAIN OUTCOME MEASURES:The primary outcome was the recorded diagnosis of IBD. RESULTS:11 325 025 individuals were included and 65 700 IBD cases were identified, of which 22 560 were incident diagnoses made during the study period. Overall, there were 8077 incident cases of Crohn's disease (CD) and 12 369 incident cases of ulcerative colitis (UC). Crude incidence estimates of 'IBD overall', CD and UC were 28.6 (28.2 to 28.9), 10.2 (10.0 to 10.5) and 15.7 (15.4 to 15.9)/100 000 person years, respectively. No change in IBD incidence was observed for adults aged 17-40 years and children aged 0-9 years. However, for adults aged over 40 years, incidence fell from 37.8 (34.5 to 41.4) to 23.6 (21.3 to 26.0)/100 000 person years (average decrease 2.3% (1.9 to 2.7)/year (p<0.0001)). In adolescents aged 10-16 years, incidence rose from 13.1 (8.4 to 19.5) to 25.4 (19.5 to 32.4)/100 000 person years (average increase 3.0% (1.7 to 4.3)/year (p<0.0001)). Point prevalence estimates on 31 December 2018 for IBD overall, CD and UC were 725, 276 and 397 per 100 000 people, respectively. CONCLUSIONS:This is one of the largest studies ever undertaken to investigate trends in IBD epidemiology. Although we observed stable or falling incidence of IBD in adults, our results are consistent with some of the highest reported global incidence and prevalence rates for IBD, with a 94% rise in incidence in adolescents. Further investigation is required to understand the aetiological drivers.
| S-EPMC7371214 | biostudies-literature
Project description:The incidence and prevalence of Huntington's disease (HD) based on a systematic review and meta-analysis of 20 studies published from 1985 to 2010 was estimated at 0.38 per 100,000 person-years (95% confidence interval [CI], 0.16-0.94) and 2.71 per 100,000 persons (95% CI, 1.55-4.72), respectively. Since 2010, there have been many new epidemiological studies of HD. We sought to update the global estimates of HD incidence and prevalence using data published up to February 2022 and perform additional analyses based on study continent. Medline and Embase were searched for epidemiological studies of HD published between 2010 and 2022. Risk of bias was assessed using a quality assessment tool. Estimated pooled prevalence or incidence was calculated using a random-effects meta-analysis. A total of 33 studies published between 2010 and 2022 were included. Pooled incidence was 0.48 cases per 100,000 person-years (95% CI, 0.33-0.63). Subgroup analysis by continent demonstrated a significantly higher incidence of HD in Europe and North America than in Asia. Pooled prevalence was 4.88 per 100,000 (95% CI, 3.38-7.06). Subanalyses by continent demonstrated that the prevalence of HD was significantly higher in Europe and North America than in Africa. The minor increase in prevalence (more so than incidence) demonstrated in this updated review could relate to the enhanced availability of molecular testing, earlier diagnosis, increased life expectancy, and de novo mutations. Limitations include variable case ascertainment methods and lacking case validation data. © 2022 Her Majesty the Queen in Right of Canada. Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society. Reproduced with the permission of the Minister of Public Health Agency of Canada.
| S-EPMC10086981 | biostudies-literature
Project description:BACKGROUND:Primary care settings are uniquely positioned to reach individuals at risk of alcohol use disorder through technology-delivered behavioral health interventions. Despite emerging effectiveness data, few efforts have been made to summarize the collective findings from these delivery approaches. OBJECTIVE:The aim of this study was to review recent literature on the use of technology to deliver, enhance, or support the implementation of alcohol-related interventions in primary care. We focused on addressing questions related to (1) categorization or target of the intervention, (2) descriptive characteristics and context of delivery, (3) reported efficacy, and (4) factors influencing efficacy. METHODS:We conducted a comprehensive search and systematic review of completed studies at the intersection of primary care, technology, and alcohol-related problems published from January 2000 to December 2018 within EBSCO databases, ProQuest Dissertations, and Cochrane Reviews. Of 2307 initial records, 42 were included and coded independently by 2 investigators. RESULTS:Compared with the years of 2000 to 2009, published studies on technology-based alcohol interventions in primary care nearly tripled during the years of 2010 to 2018. Of the 42 included studies, 28 (64%) were randomized controlled trials. Furthermore, studies were rated on risk of bias and found to be predominantly low risk (n=18), followed by moderate risk (n=16), and high risk (n=8). Of the 24 studies with primary or secondary efficacy outcomes related to drinking and drinking-related harms, 17 (71%) reported reduced drinking or harm in all primary and secondary efficacy outcomes. Furthermore, of the 31 studies with direct comparisons with treatment as usual (TAU), 13 (42%) reported that at least half of the primary and secondary efficacy outcomes of the technology-based interventions were superior to TAU. High efficacy was associated with provider involvement and the reported use of an implementation strategy to deliver the technology-based intervention. CONCLUSIONS:Our systematic review has highlighted a pattern of growth in the number of studies evaluating technology-based alcohol interventions in primary care. Although these interventions appear to be largely beneficial in primary care, outcomes may be enhanced by provider involvement and implementation strategy use. This review enables better understanding of the typologies and efficacy of these interventions and informs recommendations for those developing and implementing technology-based alcohol interventions in primary care settings.
| S-EPMC6475823 | biostudies-other
Project description:BackgroundAs Huntington's disease (HD) is a progressive disease for which there is no cure yet, patients in the advanced stage of HD may benefit from palliative care.ObjectiveTo review the literature focusing on palliative care in advanced stage HD, and the level of evidence.MethodsPublications between 1993 and October 29th, 2021 from 8 databases (Embase, Web of Science, Cochrane, Emcare, PsycINFO, Academic Search Premier, PMC PubMed Central and Pubmed) were included. The literature was deductively classified based on topics that are part of the definition of palliative care, or as care-related topics that emerged from the literature. Levels of evidence I (high) - V (low) were determined as defined by the Joanna Briggs Institute.ResultsOur search resulted in 333 articles, 38 of which were included. The literature covered four domains of palliative care: physical care, psychological care, spiritual care, and social care. Four other topics in the literature were: advance care planning, end-of-life needs assessments, pediatric HD care, and need for health care services. Most literature was underpinned by a low level of evidence, except for the topics on social care (Level III-V), advance care planning (Level II-V) and end-of-life needs assessments (Level II-III).ConclusionsTo deliver adequate palliative care in advanced HD, both general and HD-specific symptoms and problems need to be addressed. As the level of evidence in existing literature is low, further research is essential to improve palliative care and to meet patient's wishes and needs.
| S-EPMC10155365 | biostudies-literature
Project description:Background: Primary liver cancer is a leading cause of cancer deaths worldwide. Global burden varies, reflecting geographical distribution of viral hepatitis. Our objective was to perform a systematic review and meta-analysis of published current trends in incidence of adult liver cancers and histological types worldwide. Methods: This study used systematic searches of PubMed, Embase, CINAHL, and Web of Science databases for English-language peer-reviewed articles published from 1 January 2008 to 01 September 2019. Inclusion criteria were population-based studies of adult liver cancer patients with quantitative estimates of temporal trends in incidence for liver cancers and/or histological types. For multiple studies from the same geographical area, only the publication that reported the most recent trends for the same cancer type and population subgroup was included. Review was conducted per PRISMA guidelines. Two authors independently extracted data and critically assessed studies. Proposed contributors to observed trends were extracted from included articles. Study-specific estimates of the annual percentage change (APC) in incidence rates with 95% confidence intervals (CIs) were pooled using random-effects meta-analysis models. Heterogeneity was measured using the I 2 statistics and publication bias evaluated using funnel plots and Egger's tests. Results: Overall, 53 studies met the inclusion criteria, of which 31 were included in the meta-analysis. Overall, pooled APC estimates were +0.8 (95% CI -0.3, +2.0) for liver cancers combined, +2.6 (95% CI +1.2, +4.0) for hepatocellular carcinoma (HCC), and +4.3 (95% CI +2.5, +6.1) for intrahepatic cholangiocarcinoma. Subgroup analyses indicated increasing trends for liver cancers (APC +3.2, 95% CI +2.5, +3.9) and HCC (APC +3.6, 95% CI +2.9, +4.4) in the region of North America/Europe/Australia, whereas corresponding trends were decreasing (APC -1.7, 95% CI -2.2, -1.1) and stable (APC -0.7, 95% CI -1.9, +0.5) in Asia, respectively. Conclusions: Incidence is increasing for adult liver cancers and HCC in Western countries, whereas trends are decreasing in the Asian region, although still remaining high. Our findings highlight the importance of viral hepatitis control and lifestyle interventions to reduce global liver cancer burden. Ongoing surveillance is also vital to detect early shifts in incidence trends.
| S-EPMC7058661 | biostudies-literature
Project description:BACKGROUND:Primary and community care are key settings for the effective management of long term conditions. We aimed to evaluate the pattern of health outcomes in chronic disease management interventions for adults with physical health problems implemented in primary or community care settings. METHODS:The methods were based on our previous review published in 2006. We performed database searches for articles published from 2006 to 2014 and conducted a systematic review with narrative synthesis using the Cochrane Effective Practice and Organisation of Care taxonomy to classify interventions and outcomes. The interventions were mapped to Chronic Care Model elements. The pattern of outcomes related to interventions was summarized by frequency of statistically significant improvements in health care provision and patient outcomes. RESULTS:A total of 9589 journal articles were retrieved from database searches and snowballing. After screening and verification, 165 articles that detailed 157 studies were included. There were few studies with Health Care Organization (1.9% of studies) or Community Resources (0.6% of studies) as the primary intervention element. Self-Management Support interventions (45.8% of studies) most frequently resulted in improvements in patient-level outcomes. Delivery System Design interventions (22.6% of studies) showed benefits in both professional and patient-level outcomes for a narrow range of conditions. Decision Support interventions (21.3% of studies) had impact limited to professional-level outcomes, in particular use of medications. The small number of studies of Clinical Information System interventions (8.9%) showed benefits for both professional- and patient-level outcomes. CONCLUSIONS:The published literature has expanded substantially since 2006. This review confirms that Self-Management Support is the most frequent Chronic Care Model intervention that is associated with statistically significant improvements, predominately for diabetes and hypertension.
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Project description:BackgroundChronic kidney disease (CKD) affects ?10% of the adult population. The majority of patients with CKD are managed by primary care physicians, and despite the availability of effective treatment options, the use of evidence-based interventions for CKD in this setting remains suboptimal. Clinical pathways have been identified as effective tools to guide primary care physicians in providing evidence-based care. We aimed to describe the availability, characteristics and credibility of clinical pathways for adult CKD using a scoping review methodology.MethodsWe searched Medline, Embase, CINAHL and targeted Internet sites from inception to 31 October 2014 to identify studies and resources that identified adult CKD clinical pathways for primary care settings. Study selection and data extraction were independently performed by two reviewers.ResultsFrom 487 citations, 41 items were eligible for review: 7 published articles and 34 grey literature resources published between 2001 and 2014. Of the 41 clinical pathways, 32, 24 and 22% were from the UK, USA and Canada, respectively. The majority (66%, n = 31) of clinical pathways were static in nature (did not have an online interactive feature). The majority (76%) of articles/resources reported using one or more clinical practice guidelines as a resource to guide the clinical pathway content. Few articles described a dissemination and evaluation plan for the clinical pathway, but most reported the targeted end-users.ConclusionsOur scoping review synthesized available literature on CKD clinical pathways in the primary care setting. We found that existing clinical pathways are diverse in their design, content and implementation. These results can be used by researchers developing or testing new or existing clinical pathways and by practitioners and health system stakeholders who aim to implement CKD clinical pathways in clinical practice.
| S-EPMC5837585 | biostudies-literature
Project description:ObjectivesTo explore whether UK primary care databases arising from two different software systems can be feasibly combined, by comparing rates of Huntington's disease (HD, which is rare) and 14 common cancers in the two databases, as well as characteristics of people with these conditions.DesignDescriptive study.SettingPrimary care electronic health records from Clinical Practice Research Datalink (CPRD) GOLD and CPRD Aurum databases, with linked hospital admission and death registration data.Participants4986 patients with HD and 1 294 819 with an incident cancer between 1990 and 2019.Primary and secondary outcome measuresIncidence and prevalence of HD by calendar period, age group and region, and annual age-standardised incidence of 14 common cancers in each database, and in a subset of 'overlapping' practices which contributed to both databases. Characteristics of patients with HD or incident cancer: medical history, recent prescribing, healthcare contacts and database follow-up.ResultsIncidence and prevalence of HD were slightly higher in CPRD GOLD than CPRD Aurum, but with similar trends over time. Cancer incidence in the two databases differed between 1990 and 2000, but converged and was very similar thereafter. Participants in each database were most similar in terms of medical history (median standardised difference, MSD 0.03 (IQR 0.01-0.03)), recent prescribing (MSD 0.06 (0.03-0.10)) and demographics and general health variables (MSD 0.05 (0.01-0.09)). Larger differences were seen for healthcare contacts (MSD 0.27 (0.10-0.41)), and database follow-up (MSD 0.39 (0.19-0.56)).ConclusionsDifferences in cancer incidence trends between 1990 and 2000 may relate to use of a practice-level data quality filter (the 'up-to-standard' date) in CPRD GOLD only. As well as the impact of data curation methods, differences in underlying data models can make it more challenging to define exactly equivalent clinical concepts in each database. Researchers should be aware of these potential sources of variability when planning combined database studies and interpreting results.
| S-EPMC10868307 | biostudies-literature
Project description:BackgroundIn the UK, general practitioners (GPs) are the most commonly used providers of care for emotional concerns.ObjectiveTo update and synthesize literature on barriers and facilitators to GP-patient communication about emotional concerns in UK primary care.DesignSystematic review and qualitative synthesis.MethodWe conducted a systematic search on MEDLINE (OvidSP), PsycInfo and EMBASE, supplemented by citation chasing. Eligible papers focused on how GPs and adult patients in the UK communicated about emotional concerns. Results were synthesized using thematic analysis.ResultsAcross 30 studies involving 342 GPs and 720 patients, four themes relating to barriers were: (i) emotional concerns are difficult to disclose; (ii) tension between understanding emotional concerns as a medical condition or arising from social stressors; (iii) unspoken assumptions about agency resulting in too little or too much involvement in decisions and (iv) providing limited care driven by little time. Three facilitative themes were: (v) a human connection improves identification of emotional concerns and is therapeutic; (vi) exploring, explaining and negotiating a shared understanding or guiding patients towards new understandings and (vii) upfront information provision and involvement manages expectations about recovery and improves engagement in treatment.ConclusionThe findings suggest that treatment guidelines should acknowledge: the therapeutic value of a positive GP-patient relationship; that diagnosis is a two-way negotiated process rather than an activity strictly in the doctor's domain of expertise; and the value of exploring and shaping new understandings about patients' emotional concerns and their management.
| S-EPMC7474532 | biostudies-literature
Project description:ObjectiveProcess evaluations (PEs) alongside randomised controlled trials of complex interventions are valuable because they address questions of for whom, how and why interventions had an impact. We synthesised the methods used in PEs of primary care interventions, and their main findings on implementation barriers and facilitators.DesignSystematic review using the UK Medical Research Council guidance for PE as a guide.Data sourcesAcademic databases (MEDLINE, SCOPUS, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, EMBASE and Global Health) were searched from 1998 until June 2018.Eligibility criteriaWe included PE alongside randomised controlled trials of primary care interventions which aimed to improve outcomes for patients with non-communicable diseases.Data extraction and synthesisTwo independent reviewers screened and conducted the data extraction and synthesis, with a third reviewer checking a sample for quality assurance.Results69 studies were included. There was an overall lack of consistency in how PEs were conducted and reported. The main weakness is that only 30 studies were underpinned by a clear intervention theory often facilitated by the use of existing theoretical frameworks. The main strengths were robust sampling strategies, and the triangulation of qualitative and quantitative data to understand an intervention's mechanisms. Findings were synthesised into three key themes: (1) a fundamental mismatch between what the intervention was designed to achieve and local needs; (2) the required roles and responsibilities of key actors were often not clearly understood; and (3) the health system context-factors such as governance, financing structures and workforce-if unanticipated could adversely impact implementation.ConclusionGreater consistency is needed in the reporting and the methods of PEs, in particular greater use of theoretical frameworks to inform intervention theory. More emphasis on formative research in designing interventions is needed to align the intervention with the needs of local stakeholders, and to minimise unanticipated consequences due to context-specific barriers.Prospero registration numberCRD42016035572.
| S-EPMC6687007 | biostudies-literature