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Neurological Sciences : Official... May 2024Living with a chronic illness poses particular challenges, including maintaining current disease knowledge to optimise self-management and interaction with health... (Review)
Review
Living with a chronic illness poses particular challenges, including maintaining current disease knowledge to optimise self-management and interaction with health professionals. People with Multiple Sclerosis (MS) are increasingly encouraged to participate in shared decision making. Making informed decisions is likely to rely on adequate knowledge about the condition and its associated risks. The aim of this systematic review is to explore patients' existing MS knowledge and MS risk knowledge, and how these relate to demographic and disease variables. A literature search was conducted using PsycINFO, PubMed and Cochrane Library. Eligible studies were published peer-reviewed reporting quantitative measures of MS knowledge and MS risk knowledge in adult MS patients. Eighteen studies met inclusion criteria comprising a total sample of 4,420 patients. A narrative synthesis was undertaken because studies employed various measures. Suboptimal levels of MS knowledge and MS risk knowledge were generally identified across studies. Greater self-reported adherence and a willingness to take medication were related to higher MS knowledge, while educational level was a significant predictor of both MS knowledge and MS risk knowledge. Associations with other demographic and disease-related variables were mixed for both knowledge domains. Direct comparison of results across studies were limited by methodological, sampling and contextual heterogeneity. The review's findings and implications for future research and clinical practice are considered from this perspective.
PubMed: 38700598
DOI: 10.1007/s10072-024-07541-5 -
Headache May 2024This study reviewed migraine prevalence and disability gathered through epidemiologic survey studies in the United States conducted over the past three decades. We...
BACKGROUND
This study reviewed migraine prevalence and disability gathered through epidemiologic survey studies in the United States conducted over the past three decades. We summarized these studies and evaluated changing patterns of disease prevalence and disability.
METHODS
We conducted a systematic review of US studies addressing the prevalence, disability, and/or burden of migraine, including both episodic migraine (EM) and chronic migraine (CM). A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) protocol was used in conjunction with the PubMed search engine. Eligible studies were published before February 2022, were conducted in the United States, included representative samples, and used a case definition of migraine based on the International Classification of Headache Disorders (ICHD). The primary measure of disease burden was the Migraine Disability Assessment Scale (MIDAS). The MIDAS measures days lost due to migraine over 3 months in three domains and defines groups with moderate (Grade III) or severe disability (Grade IV) using cut-scores.
RESULTS
Of the 1609 identified records, 26 publications from 11 US population-based studies met eligibility criteria. The prevalence of migraine in the population has remained relatively consistent for the past 30 years: ranging from 11.7% to 14.7% overall, 17.1% to 19.2% in women, and 5.6% to 7.2% in men in the studies reviewed. CM prevalence is 0.91% (1.3% among women and 0.5% of men) in adults and 0.8% in adolescents. The proportion of people with migraine and moderate-to-severe MIDAS disability (Grades III-IV), has trended upward across studies from 22.0% in 2005 to 39.0% in 2012, to 43.2% in 2016, and 42.4% in 2018. A consistently higher proportion of women were assigned MIDAS Grades III/IV relative to men.
CONCLUSION
The prevalence of migraine in the United States has remained stable over the past three decades while migraine-related disability has increased. The disability trend could reflect changes in reporting, study methodology, social and societal changes, or changes in exacerbating or remediating factors that make migraine more disabling, among other hypotheses. These issues merit further investigation.
Topics: Humans; Migraine Disorders; United States; Prevalence; Cost of Illness; Disability Evaluation
PubMed: 38700185
DOI: 10.1111/head.14709 -
Orphanet Journal of Rare Diseases Apr 2024Fabry disease (FD) is a rare lysosomal storage disease associated with glycolipid accumulation that impacts multiple physiological systems. We conducted a systematic... (Review)
Review
BACKGROUND
Fabry disease (FD) is a rare lysosomal storage disease associated with glycolipid accumulation that impacts multiple physiological systems. We conducted a systematic literature review (SLR) to characterize the humanistic (quality of life [QoL]) and economic burden of FD.
METHODS
Searches were conducted in the Embase, MEDLINE, and MEDLINE In-Process databases from inception to January 19, 2022. Conference abstracts of specified congresses were manually searched. Additional searches were performed in the Cochrane and ProQuest databases for the humanistic SLR and the National Health Service Economic Evaluations Database for the economic SLR. Studies of patients with FD of any sex, race, and age, and published in the English language were included. There was no restriction on intervention or comparator. For the humanistic SLR, studies that reported utility data, database/registry-based studies, questionnaires/surveys, and cohort studies were included. For the economic SLR, studies reporting economic evaluations or assessing the cost of illness and resource use were included.
RESULTS
Of the 1363 records identified in the humanistic search, 36 studies were included. The most commonly used QoL assessments were the 36-item Short-Form Health Survey (n = 16), EQ-5D questionnaire descriptive system or visual analog scale (n = 9), and the Brief Pain Inventory (n = 8). Reduced QoL was reported in patients with FD compared with healthy populations across multiple domains, including pain, physical functioning, and depressive symptoms. Multiple variables-including sex, age, disease severity, and treatment status-impacted QoL. Of the 711 records identified in the economic burden search, 18 studies were included. FD was associated with high cost and healthcare resource use. Contributors to the cost burden included enzyme replacement therapy, healthcare, and social care. In the seven studies that reported health utility values, lower utility scores were generally associated with more complications (including cardiac, renal, and cerebrovascular morbidities) and with classical disease in males.
CONCLUSION
FD remains associated with a high cost and healthcare resource use burden, and reduced QoL compared with healthy populations. Integrating information from QoL and economic assessments may help to identify interventions that are likely to be of most value to patients with FD.
Topics: Fabry Disease; Humans; Quality of Life; Cost of Illness; Male
PubMed: 38689282
DOI: 10.1186/s13023-024-03131-y -
Menopause (New York, N.Y.) Jul 2024The aim of the study is to identify suitable definitions and patient-reported outcome measures (PROMs) to assess each of the six core outcomes previously identified...
OBJECTIVE
The aim of the study is to identify suitable definitions and patient-reported outcome measures (PROMs) to assess each of the six core outcomes previously identified through the COMMA (Core Outcomes in Menopause) global consensus process relating to vasomotor symptoms: frequency, severity, distress/bother/interference, impact on sleep, satisfaction with treatment, and side effects.
METHODS
A systematic review was conducted to identify relevant definitions for the outcome of side-effects and PROMs with acceptable measurement properties for the remaining five core outcomes. The consensus process, involving 36 participants from 16 countries, was conducted to review definitions and PROMs and make final recommendations for the measurement of each core outcome.
RESULTS
A total of 21,207 publications were screened from which 119 reporting on 40 PROMs were identified. Of these 40 PROMs, 36 either did not adequately map onto the core outcomes or lacked sufficient measurement properties. Therefore, only four PROMs corresponding to two of the six core outcomes were considered for recommendation. We recommend the Hot Flash Related Daily Interference Scale to measure the domain of distress, bother, or interference of vasomotor symptoms and to capture impact on sleep (one item in the Hot Flash Related Daily Interference Scale captures interference with sleep). Six definitions of "side effects" were identified and considered. We recommend that all trials report adverse events, which is a requirement of Good Clinical Practice.
CONCLUSIONS
We identified suitable definitions and PROMs for only three of the six core outcomes. No suitable PROMs were found for the remaining three outcomes (frequency and severity of vasomotor symptoms and satisfaction with treatment). Future studies should develop and validate PROMs for these outcomes.
Topics: Humans; Female; Hot Flashes; Menopause; Patient Reported Outcome Measures; Consensus; Patient Satisfaction; Vasomotor System; Quality of Life
PubMed: 38688464
DOI: 10.1097/GME.0000000000002370 -
Obesity Surgery Jun 2024Since a previous systematic review published in 2016, there have been further studies investigating the association of changes in cognitive function following bariatric... (Review)
Review
Since a previous systematic review published in 2016, there have been further studies investigating the association of changes in cognitive function following bariatric surgery. All studies since the original review that reported at least one element of cognitive function before and after bariatric surgery were eligible. A total of 137 additional studies were identified; 13 were included in addition to the 18 studies previously. Almost all studies reported improvements in at least one domain. Most revealed improvements were limited to a few domains and were not universal. Further findings investigated cognitive function improvement in relation to procedure choice, and mental health or quality of life post-surgery. Further high-powered studies are still necessary, but these findings support the impact of bariatric surgery on cognitive function in obesity.
Topics: Humans; Bariatric Surgery; Cognition; Obesity, Morbid; Quality of Life; Female; Male; Adult; Treatment Outcome; Middle Aged
PubMed: 38668820
DOI: 10.1007/s11695-024-07235-z -
Applied Neuropsychology. Adult Apr 2024Disparities exist in the engagement and success of individuals seeking medications for opioid use disorder (MOUD) treatment. Existing work suggests that individual-level... (Review)
Review
Disparities exist in the engagement and success of individuals seeking medications for opioid use disorder (MOUD) treatment. Existing work suggests that individual-level factors such as cognitive functioning influence MOUD treatment, less is known about the role of environmental factors beyond the individual such as social determinants of health (SDOH). The aim of this systematic review was to summarize the literature of neuropsychological assessment in the context of MOUD treatment using an SDOH framework. We included peer-reviewed articles based in the United States and published in the English language that evaluated neuropsychological assessment on MOUD treatment outcomes. Three electronic databases were searched from January 2022 to September 2023 without restricting the date of publication for article inclusion. We identified 34 empirical articles that met inclusion criteria, the majority being nonrandomized clinical trials. Few studies examined differences in neuropsychological performance over time or in response to an adjunct intervention. Findings comparing cognitive functioning across MOUD and comparisons groups were mixed, as were findings from the studies that examined changes in cognitive functioning over time. Factors represented from the SDOH framework included educational attainment, premorbid intellectual functioning, and employment status. Neuropsychological domains and type of assessments varied, as did inclusion/exclusion and demographic characteristics. Existing literature is mixed on whether neuropsychological deficits in individuals with OUD are amenable to treatment, particularly among populations disproportionally disadvantaged by SDOH. More research is needed on the SDOH and other contextual factors that influence cognitive factors and MOUD treatment engagement and success.
PubMed: 38662711
DOI: 10.1080/23279095.2024.2336195 -
Journal of Affective Disorders Jul 2024Major depressive disorder (MDD) is a heterogeneous group of mood disorders. A prominent symptom domain is anhedonia narrowly defined as a loss of interest and ability to... (Meta-Analysis)
Meta-Analysis Review
BACKGROUND
Major depressive disorder (MDD) is a heterogeneous group of mood disorders. A prominent symptom domain is anhedonia narrowly defined as a loss of interest and ability to experience pleasure. Anhedonia is associated with depressive symptom severity, MDD prognosis, and suicidality. We perform a systematic review and meta-analysis of extant literature investigating the effects of anhedonia on health-related quality of life (HRQoL) and functional outcomes in persons with MDD.
METHODS
A literature search was conducted on PubMed, OVID databases, and SCOPUS for published articles from inception to November 2023, reporting on anhedonia and patient-reported outcomes in persons with MDD. The reported correlation coefficients between anhedonia and self-reported measures of both HRQoL and functional outcomes were pooled using a random effects model.
RESULTS
We identified 20 studies that investigated anhedonia with HRQoL and/or functional outcomes in MDD. Anhedonia as measured by the Snaith-Hamilton Pleasure Scale (SHAPS) scores had a statistically significant correlation with patient-reported HRQoL (r = -0.41 [95 % CI = -0.60, -0.18]) and functional impairment (r = 0.39 [95 % CI = 0.22, 0.54]).
LIMITATIONS
These preliminary results primarily investigate correlations with consummatory anhedonia and do not distinguish differences in anticipatory anhedonia, reward valuation or reward learning; therefore, these results require replication.
CONCLUSIONS
Persons with MDD experiencing symptoms of anhedonia are more likely to have worse prognosis including physical, psychological, and social functioning deficits. Anhedonia serves as an important predictor and target for future therapeutic and preventative tools in persons with MDD.
Topics: Humans; Anhedonia; Depressive Disorder, Major; Quality of Life
PubMed: 38657767
DOI: 10.1016/j.jad.2024.04.086 -
JAMA Dermatology Jun 2024Inconsistent reporting of outcomes in clinical trials of rosacea is impeding and likely preventing accurate data pooling and meta-analyses. There is a need for...
IMPORTANCE
Inconsistent reporting of outcomes in clinical trials of rosacea is impeding and likely preventing accurate data pooling and meta-analyses. There is a need for standardization of outcomes assessed during intervention trials of rosacea.
OBJECTIVE
To develop a rosacea core outcome set (COS) based on key domains that are globally relevant and applicable to all demographic groups to be used as a minimum list of outcomes for reporting by rosacea clinical trials, and when appropriate, in clinical practice.
EVIDENCE REVIEW
A systematic literature review of rosacea clinical trials was conducted. Discrete outcomes were extracted and augmented through discussions and focus groups with key stakeholders. The initial list of 192 outcomes was refined to identify 50 unique outcomes that were rated through the Delphi process Round 1 by 88 panelists (63 physicians from 17 countries and 25 patients with rosacea in the US) on 9-point Likert scale. Based on feedback, an additional 11 outcomes were added in Round 2. Outcomes deemed to be critical for inclusion (rated 7-9 by ≥70% of both groups) were discussed in consensus meetings. The outcomes deemed to be most important for inclusion by at least 85% of the participants were incorporated into the final core domain set.
FINDINGS
The Delphi process and consensus-building meetings identified a final core set of 8 domains for rosacea clinical trials: ocular signs and symptoms; skin signs of disease; skin symptoms; overall severity; patient satisfaction; quality of life; degree of improvement; and presence and severity of treatment-related adverse events. Recommendations were also made for application in the clinical setting.
CONCLUSIONS AND RELEVANCE
This core domain set for rosacea research is now available; its adoption by researchers may improve the usefulness of future trials of rosacea therapies by enabling meta-analyses and other comparisons across studies. This core domain set may also be useful in clinical practice.
Topics: Rosacea; Humans; Clinical Trials as Topic; Consensus; Delphi Technique; Outcome Assessment, Health Care; Treatment Outcome
PubMed: 38656294
DOI: 10.1001/jamadermatol.2024.0636 -
Appetite Aug 2024Eating behaviour that does not centralise weight, otherwise known as weight-neutral, is associated with improved physical and psychological health, and greater health... (Review)
Review
Eating behaviour that does not centralise weight, otherwise known as weight-neutral, is associated with improved physical and psychological health, and greater health promoting behaviours. However, consolidated evidence is lacking. This study aimed to systematically evaluate 'health-centric' eating behaviour reflective of weight-neutral approaches, and their relationship with health (physical and mental) and health promoting behaviours. A systematic search was performed, identifying observational studies with adult populations, ≥1 physical/mental health outcome(s), and ≥1 validated measure(s) of health-centric eating behaviour. Study design, sample characteristics and outcomes were extracted and characterised into four domains. Our search identified 8281 records, with 86 studies, 75 unique datasets, and 78 unique exposures including 94,710 individuals. Eating behaviours included intuitive eating (n = 48), mindful eating (n = 19), and eating competence (n = 11). There were 298 outcomes identified for body composition, size, and physical health (n = 116), mental health and wellbeing (n = 123), health promoting behaviours (n = 51) and other eating behaviour (n = 8). Higher levels of intuitive eating, mindful eating and eating competence were significantly related to a lower BMI, better diet quality and greater physical activity. Higher intuitive and mindful eating were significantly related to lower levels of disordered eating, and depressive symptoms, and greater body image, self-compassion, and mindfulness. Greater eating competence and intuitive eating were significantly related to higher fruit and vegetable intake, and greater eating competence to higher fibre intake and better sleep quality. Our results demonstrate that 'health-centric' eating behaviours are related to a range of favourable health outcomes and engagement in health promoting behaviours. These findings help to enhance our understanding of eating behaviours that do not centre around body weight, providing support for health-centric eating behaviour in healthcare. Future research should focus on intervention studies and more diverse population groups.
Topics: Humans; Observational Studies as Topic; Feeding Behavior; Adult; Female; Health Behavior; Male; Middle Aged; Mental Health; Diet, Healthy; Exercise; Body Mass Index; Body Weight; Diet; Mindfulness; Body Composition; Young Adult; Health Status; Aged
PubMed: 38643903
DOI: 10.1016/j.appet.2024.107361 -
Journal of Pediatric Surgery Jul 2024Neighborhood and built environment encompass one key area of the Social Determinants of Health (SDOH) and is frequently assessed using area-level indices. (Review)
Review
CONTEXT
Neighborhood and built environment encompass one key area of the Social Determinants of Health (SDOH) and is frequently assessed using area-level indices.
OBJECTIVE
We sought to systematically review the pediatric surgery literature for use of commonly applied area-level indices and to compare their utility for prediction of outcomes.
DATA SOURCES
A literature search was conducted using PubMed, Ovid MEDLINE, Ovid MEDLINE Epub Ahead of Print, PsycInfo, and an artificial intelligence search tool (1/2013-2/2023).
STUDY SELECTION
Inclusion required pediatric surgical patients in the US, surgical intervention performed, and use of an area-level metric.
DATA EXTRACTION
Extraction domains included study, patient, and procedure characteristics.
RESULTS
Area Deprivation Index is the most consistent and commonly accepted index. It is also the most granular, as it uses Census Block Groups. Child Opportunity Index is less granular (Census Tract), but incorporates pediatric-specific predictors of risk. Results with Social Vulnerability Index, Neighborhood Deprivation Index, and Neighborhood Socioeconomic Status were less consistent.
LIMITATIONS
All studies were retrospective and quality varied from good to fair.
CONCLUSIONS
While each index has strengths and limitations, standardization on ideal metric(s) for the pediatric surgical population will help build the inferential power needed to move from understanding the role of SDOH to building meaningful interventions towards equity in care.
TYPE OF STUDY
Systematic Review.
LEVEL OF EVIDENCE
Level III.
Topics: Humans; Child; Perioperative Care; Social Determinants of Health; Built Environment; Residence Characteristics; Neighborhood Characteristics; Surgical Procedures, Operative
PubMed: 38631997
DOI: 10.1016/j.jpedsurg.2024.03.033