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Orphanet Journal of Rare Diseases Aug 2023Gaucher's disease (GD), a rare condition, represents the most common lysosomal storage disorder. The cardinal manifestations of GD are fatigue, hepatosplenomegaly,...
BACKGROUND
Gaucher's disease (GD), a rare condition, represents the most common lysosomal storage disorder. The cardinal manifestations of GD are fatigue, hepatosplenomegaly, anemia, thrombocytopenia, bone pain, and bone infarction, thereby culminating in a marked deterioration of patients' quality of life (QoL). Patient-reported outcomes (PROs) offer valuable insights into the impact of GD on patients' QoL and symptoms. This systematic review aimed to identify and analyze PROs and outcome measures in GD patients.
METHODS
We systematically searched PubMed, Web of Science Core Collections, EMBASE, SCOPUS, Cochrane Library, PsycINFO, Wan Fang Data, China National Knowledge Infrastructure (CNKI), and the Chinese Biomedical Literature Database (CBM). The methodological quality of the included studies was assessed using a mixed methods assessment tool.
RESULTS
A total of 33 studies were identified, encompassing 24 distinct patient-reported outcome instruments, with the most frequently employed instrument being the SF-36. The study designs included eighteen cross-sectional studies, seven pre- and post-intervention investigations, three randomized controlled trials, two cohort studies, two qualitative inquiries, and one validation study. These studies explored diverse domains such as the QoL and cardinal symptoms (e.g., fatigue, pain, bleeding, cognition, social relationships, and psychological functioning) in patients with GD. Furthermore, significant attention was directed towards the appraisal of the therapeutic benefits of various interventions in patients with GD. A novel GD-specific instrument has also been developed, which has two applied versions: a 24-item variant for routine clinical monitoring and a 17-item form for use in clinical trials.
CONCLUSION
PROs have garnered increased attention and concern in the realm of GD. Despite this progress, it is noteworthy that the instruments used to measure PROs in GD are still predominantly generic instruments. While researchers have endeavored to develop and validate a disease-specific instrument, currently the use of this instrument is limited. Owing to several challenges, including the small number of patients, heterogeneity of the disease, and cross-regional discrepancies in study findings, GD poses substantial difficulties in the measurement of QoL and development of instruments. Consequently, patients with GD require more dependable measurement instruments that accurately reflect their QoL, efficacy of treatment, and facilitate healthcare decision-making.
Topics: Humans; Cross-Sectional Studies; Fatigue; Gaucher Disease; Lysosomal Storage Diseases; Quality of Life
PubMed: 37626429
DOI: 10.1186/s13023-023-02844-w -
BMC Nursing Aug 2023Self-care is a necessary measure against occupational injuries of nurses and improves nursing performance at the bedside. Nurses have different scales to measure...
BACKGROUND
Self-care is a necessary measure against occupational injuries of nurses and improves nursing performance at the bedside. Nurses have different scales to measure self-care, and researchers are confused about choosing valid and reliable scales. This systematic review aimed to evaluate the measurement properties of self-care scales in nurses to identify the best available scales.
METHODS
Four databases (PubMed, Web of Science, SCOPUS, and ProQuest) were systematically searched, with no date limiters, until 9 Jun 2023. A manual search was performed with Google Scholar and the reference list of articles to complete the search. Studies aiming to develop or determine the measurement properties of self-care in nurses were included. Based on Consensus-Based Standards for the Selection of Health Measurement Instruments, the methodological quality of the studies was determined, and the result of each study on a measurement property was rated (sufficient, insufficient, or indeterminate). The quality of the evidence was graded using a modified Grading of Recommendations Assessment, Development, and Evaluation approach (high, moderate, low, or very low). These processes were used to make recommendations and identify the best scale to assess self-care in nurses.
RESULTS
Out of 8601 articles, six articles with five different scales were included. Only internal consistency was reported across all scales. Criterion validity, measurement error, responsiveness, feasibility, and interpretability, were not reported in any of them. Content validity was reported only in two studies with inconsistent results and low-quality evidence. None of the scales had methodological quality with a rating of very good and sufficient high-quality evidence for all measurement properties.
CONCLUSIONS
None of the scales is strongly recommended to measure self-care in nurses. Only the Professional self-care scale is temporarily recommended until their quality is assessed in future studies. Considering that the content of the examined scales does not meet all the professional self-care needs of nurses, designing a valid, reliable, and specialized scale for nurses is needed.
PubMed: 37635260
DOI: 10.1186/s12912-023-01450-2 -
Archives of Dermatological Research Aug 2023Many patient-reported outcome measures (PROMs) have been used to study quality of life (QOL) in the skin cancer population. Advanced melanoma and non-melanoma skin... (Review)
Review
Many patient-reported outcome measures (PROMs) have been used to study quality of life (QOL) in the skin cancer population. Advanced melanoma and non-melanoma skin cancer (NMSC) may be associated with increased morbidity, mortality, and treatment side effects; however, it is unclear which PROM is valid and appropriate to use in these populations for both clinical and research purposes. We aimed to identify the PROMs that have been used to measure QOL in advanced skin cancer patients and determine which of these PROMs have been validated to assess QOL outcomes in this population. A PubMed and EMBASE search was conducted from its inception to March 2021 according to PRISMA guidelines with a comprehensive list of search terms under three main topics: (1) PROM; (2) advanced skin cancer; and (3) staging and interventions. We included articles utilizing a PROM measuring QOL and having a patient population with advanced skin cancer defined as melanoma stage > T1a or non-melanoma AJCC stage T3 or greater. Advanced skin cancer patients were also defined as those with metastasis or requiring adjuvant therapy (systemic chemotherapy, radiation, and immunotherapy). Studies were excluded according to the following criteria: mix of low-risk and advanced skin cancer patients in the study population without stratification into low-risk and advanced groups, stage T1a melanoma or mix of stages without stratification, low-risk NMSC, no PROM (i.e., study specific questionnaires), non-English publication, review article or protocol paper, conference abstract, or populations including non-skin cancers. A total of 1,998 articles were identified. 82 met our inclusion criteria resulting in 22 PROMs: five generic health-related (QWB-SA, AQoL-8D, EQ-5D, SF-36, and PRISM), six general cancer (EORTC QLQ-C30, EORTC QLQ-C36, LASA, IOC, Rotterdam Symptom Checklist, and FACT-G), nine disease-focused or specialized (EORTC QLQ-H&N35, EORTC QLQ-MEL38, EORTC QLQ-BR23, Facial Disability Index, FACT-H&N, FACT-BRM, FACT-B, FACT-M, and scqolit), and two general dermatology (Skindex-16 and DLQI) PROMs. All PROMs have been generally validated except for EORTC QLQ-MEL38. Only two PROMs have been validated in the advanced melanoma population: FACT-M and EORTC QLQ-C36. No PROMS have been validated in the advanced NMSC population. The PROMs that were validated in the advanced melanoma population do not include QOL issues unique to advanced skin tumors such as odor, bleeding, itching, wound care burden, and public embarrassment. Breast cancer and head and neck cancer instruments were adapted but not validated for use in the advanced skin cancer population due to the lack of an adequate instrument for this population. This study highlights the need for PROM instrument validation or creation specifically geared toward the advanced skin cancer population. Future studies should aim to develop and validate a PROM to assess QOL in this population.
Topics: Humans; Quality of Life; Skin Neoplasms; Melanoma; Surveys and Questionnaires; Patient Reported Outcome Measures
PubMed: 36469125
DOI: 10.1007/s00403-022-02479-0 -
World Journal of Gastrointestinal... Jul 2023Oesophageal cancer is the eighth most common malignancy worldwide and is associated with a poor prognosis. Oesophagectomy remains the best prospect for a cure if...
BACKGROUND
Oesophageal cancer is the eighth most common malignancy worldwide and is associated with a poor prognosis. Oesophagectomy remains the best prospect for a cure if diagnosed in the early disease stages. However, the procedure is associated with significant morbidity and mortality and is undertaken only after careful consideration. Appropriate patient selection, counselling and resource allocation is essential. Numerous risk models have been devised to guide surgeons in making these decisions.
AIM
To evaluate which multivariate risk models, using intraoperative information with or without preoperative information, best predict perioperative oesophagectomy outcomes.
METHODS
A systematic review of the MEDLINE, EMBASE and Cochrane databases was undertaken from 2000-2020. The search terms used were [(Oesophagectomy) AND (Model OR Predict OR Risk OR score) AND (Mortality OR morbidity OR complications OR outcomes OR anastomotic leak OR length of stay)]. Articles were included if they assessed multivariate based tools incorporating preoperative and intraoperative variables to forecast patient outcomes after oesophagectomy. Articles were excluded if they only required preoperative or any post-operative data. Studies appraising univariate risk predictors such as preoperative sarcopenia, cardiopulmonary fitness and American Society of Anesthesiologists score were also excluded. The review was conducted following the preferred reporting items for systematic reviews and meta-analyses model. All captured risk models were appraised for clinical credibility, methodological quality, performance, validation and clinical effectiveness.
RESULTS
Twenty published studies were identified which examined eleven multivariate risk models. Eight of these combined preoperative and intraoperative data and the remaining three used only intraoperative values. Only two risk models were identified as promising in predicting mortality, namely the Portsmouth physiological and operative severity score for the enumeration of mortality and morbidity (POSSUM) and POSSUM scores. A further two studies, the intraoperative factors and Esophagectomy surgical Apgar score based nomograms, adequately forecasted major morbidity. The latter two models are yet to have external validation and none have been tested for clinical effectiveness.
CONCLUSION
Despite the presence of some promising models in forecasting perioperative oesophagectomy outcomes, there is more research required to externally validate these models and demonstrate clinical benefit with the adoption of these models guiding postoperative care and allocating resources.
PubMed: 37555117
DOI: 10.4240/wjgs.v15.i7.1485 -
Validation and use of the Second Victim Experience and Support Tool questionnaire: a scoping review.Public Health Oct 2023Patient safety incidents can impact not only patients and families but also healthcare providers, who may experience negative emotions and symptoms, such as anxiety,... (Review)
Review
OBJECTIVES
Patient safety incidents can impact not only patients and families but also healthcare providers, who may experience negative emotions and symptoms, such as anxiety, guilt, stress, and loss of confidence. To identify and support these "second victims," a screening tool called the Second Victim Experience and Support Tool (SVEST) has been developed. This scoping review aims to map our current knowledge of the SVEST in terms of its scope of use, validation and limitations.
STUDY DESIGN
Scoping review.
METHODS
In accordance with the framework outlined by Arksey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews, we conducted a literature search in MEDLINE, CINAHL, Cochrane Library, SCOPUS, Embase and PsycINFO databases from database inception up till 1 March 2023.
RESULTS
A total of 31 studies were reviewed. The SVEST has been cross-culturally adapted from English into other languages. The SVEST has been successfully used in different contexts and with various healthcare professionals, including doctors, nurses, allied health professionals, midwives and pharmacists. The tool has been used to assess the impact of second victim experiences and the effectiveness of support interventions in addressing the phenomenon. Validity assessment of translated versions of SVEST in the reviewed studies revealed good content validity in most cases, although some studies did not report clear values for scale-level Content Validity Index. On the whole, SVEST is generally a reliable and valid tool, although further refinements and modifications may improve its validity and reliability.
CONCLUSIONS
The review highlights the significance of SVEST as a crucial resource for healthcare providers and organisations that prioritise well-being and safety in health care. It also underscores the importance of recognising the needs of second victims and offering them appropriate interventions to manage the aftermath of adverse events.
Topics: Humans; Reproducibility of Results; Health Personnel; Anxiety; Anxiety Disorders; Databases, Factual
PubMed: 37672831
DOI: 10.1016/j.puhe.2023.08.003 -
NPJ Precision Oncology Aug 2023This study evaluates the quality of published research using artificial intelligence (AI) for ovarian cancer diagnosis or prognosis using histopathology data. A... (Review)
Review
This study evaluates the quality of published research using artificial intelligence (AI) for ovarian cancer diagnosis or prognosis using histopathology data. A systematic search of PubMed, Scopus, Web of Science, Cochrane CENTRAL, and WHO-ICTRP was conducted up to May 19, 2023. Inclusion criteria required that AI was used for prognostic or diagnostic inferences in human ovarian cancer histopathology images. Risk of bias was assessed using PROBAST. Information about each model was tabulated and summary statistics were reported. The study was registered on PROSPERO (CRD42022334730) and PRISMA 2020 reporting guidelines were followed. Searches identified 1573 records, of which 45 were eligible for inclusion. These studies contained 80 models of interest, including 37 diagnostic models, 22 prognostic models, and 21 other diagnostically relevant models. Common tasks included treatment response prediction (11/80), malignancy status classification (10/80), stain quantification (9/80), and histological subtyping (7/80). Models were developed using 1-1375 histopathology slides from 1-776 ovarian cancer patients. A high or unclear risk of bias was found in all studies, most frequently due to limited analysis and incomplete reporting regarding participant recruitment. Limited research has been conducted on the application of AI to histopathology images for diagnostic or prognostic purposes in ovarian cancer, and none of the models have been demonstrated to be ready for real-world implementation. Key aspects to accelerate clinical translation include transparent and comprehensive reporting of data provenance and modelling approaches, and improved quantitative evaluation using cross-validation and external validations. This work was funded by the Engineering and Physical Sciences Research Council.
PubMed: 37653025
DOI: 10.1038/s41698-023-00432-6 -
Indian Journal of Public Health 2023Cancer-related fatigue (CRF) is a common symptom experienced by all the cancer patients at all stages of the disease and in survivors. Fatigue from cancer is one of the... (Review)
Review
Cancer-related fatigue (CRF) is a common symptom experienced by all the cancer patients at all stages of the disease and in survivors. Fatigue from cancer is one of the understated, underestimated, and least managed. Several scales have been developed to measure CRF, but they vary in the quality of psychometric properties, ease of administration, and dimensions of CRF. This systematic review explores the validity and reliability of the different CRF measurement scales. A systematic review methodology was followed to identify the scales that have been validated to measure CRF. Three separate databases PubMed, CINAHL, and Google Scholar searches were performed using different medical subject heading terms. Articles were analyzed for validity and reliability. A total of 1294 articles from three different searches identified 15 scales (unidimensional and multidimensional). Each scale varied by its psychometric properties, items, scale type, dimension, site of cancer, and population in which it is validated. Most of the scales had been validated in mixed cancer populations. Some scales are insensitive to differences in fatigue to cancer stages. Few scales are burdensome for the advanced cancer patients. In this study, 15 CRF scales were identified. Validity and reliability are varied by each questionnaire. The ideal and accepted item numbers, scale, and domains are not established. The psychometric properties of each measure require further consideration. More studies are needed to explore fatigue scales with many populations.
Topics: Humans; Reproducibility of Results; India; Neoplasms; Surveys and Questionnaires; Fatigue
PubMed: 37929389
DOI: 10.4103/ijph.ijph_1025_22 -
JMIR Medical Informatics May 2024With the increasing availability of data, computing resources, and easier-to-use software libraries, machine learning (ML) is increasingly used in disease detection and... (Review)
Review
BACKGROUND
With the increasing availability of data, computing resources, and easier-to-use software libraries, machine learning (ML) is increasingly used in disease detection and prediction, including for Parkinson disease (PD). Despite the large number of studies published every year, very few ML systems have been adopted for real-world use. In particular, a lack of external validity may result in poor performance of these systems in clinical practice. Additional methodological issues in ML design and reporting can also hinder clinical adoption, even for applications that would benefit from such data-driven systems.
OBJECTIVE
To sample the current ML practices in PD applications, we conducted a systematic review of studies published in 2020 and 2021 that used ML models to diagnose PD or track PD progression.
METHODS
We conducted a systematic literature review in accordance with PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines in PubMed between January 2020 and April 2021, using the following exact string: "Parkinson's" AND ("ML" OR "prediction" OR "classification" OR "detection" or "artificial intelligence" OR "AI"). The search resulted in 1085 publications. After a search query and review, we found 113 publications that used ML for the classification or regression-based prediction of PD or PD-related symptoms.
RESULTS
Only 65.5% (74/113) of studies used a holdout test set to avoid potentially inflated accuracies, and approximately half (25/46, 54%) of the studies without a holdout test set did not state this as a potential concern. Surprisingly, 38.9% (44/113) of studies did not report on how or if models were tuned, and an additional 27.4% (31/113) used ad hoc model tuning, which is generally frowned upon in ML model optimization. Only 15% (17/113) of studies performed direct comparisons of results with other models, severely limiting the interpretation of results.
CONCLUSIONS
This review highlights the notable limitations of current ML systems and techniques that may contribute to a gap between reported performance in research and the real-life applicability of ML models aiming to detect and predict diseases such as PD.
PubMed: 38771237
DOI: 10.2196/50117 -
Trauma, Violence & Abuse Jul 2023Domestic violence (DV) is a pervasive public health issue due to its high prevalence and the adverse effects it can have on individuals. Standardized measures can fail... (Review)
Review
Domestic violence (DV) is a pervasive public health issue due to its high prevalence and the adverse effects it can have on individuals. Standardized measures can fail to account for within-group differences that are salient among diverse populations. The current review aims to systematically review and organize the psychometric studies of culturally responsive DV measures. The goal of the review is to inform researchers and practitioners about the validity and reliability of the existing measures to facilitate measure selection. Studies were included if they were validation studies of a DV measure, published in English in a peer-reviewed journal, demonstrated cultural responsivity, and provided evidence of validity or reliability. A total of seven studies were identified. Findings from this review showed that most participants were from South Asia or were South Asian immigrants. Some culturally specific tactics included being treated like a servant, eating last, being burned, and in-laws abuse. Most measures included in this review demonstrated compelling evidence of validity and reliability. More research is needed to develop and validate culturally responsive measures with distinctly diverse populations. Valid and reliable culturally responsive measures can be helpful for DV and non-DV service providers to precisely assess DV and provide appropriate services while documenting accurate DV prevalence rates.
Topics: Humans; Asia, Southern; Domestic Violence; Family; Psychometrics; Reproducibility of Results
PubMed: 35253542
DOI: 10.1177/15248380211073844 -
BMC Sports Science, Medicine &... Feb 2024Pilates is becoming increasingly popular amongst a wide range of people and is gaining more attention. It is also an effective means of physical rehabilitation. The aim...
BACKGROUND
Pilates is becoming increasingly popular amongst a wide range of people and is gaining more attention. It is also an effective means of physical rehabilitation. The aim of this systematic review is to explore the effects of Pilates on spinal deformity and posture.
METHOD
This systematic review was conducted using four recognised academic and scientific databases (Scopus, Web of Science, PubMed and Cochrane) to identify articles that met the inclusion criteria. The secondary search used the Google Scholar and the Science Direct search engines. The search for articles for this review began in July 06, 2023 and was concluded on February 01, 2024. The search process for this study was documented using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA 2020). The PEDro scale was used to assess the internal validity and data statistics of the studies included in this systematic review and to evaluate the quality of the studies.
RESULTS
The systematic review included nine studies that met the inclusion criteria from the 651 studies retrieved, involving a total of 643 participants. The PEDro scale scores of the studies included in this systematic review ranged from 3 to 8. The intervention was in the form of Pilates or Pilates combined exercises. The studies included in this review used outcome measures of Cobb angle, angle of trunk rotation (ATR), range of motion (ROM), chest expansion, Scoliosis Research Society Questionnaire (SRS-22r) and postural assessment. Research has shown that Pilates is effective in correcting spinal deformities and posture, as well as improving quality of life, pain relief, function and fitness.
CONCLUSIONS
This systematic review provide substantial evidence that Pilates has a positive impact on improving spinal deformity and posture. However, more research is needed to validate whether Pilates can be used effectively as a physical therapy for spinal deformity rehabilitation. Pilates has considerable potential for public health interventions.
PubMed: 38388449
DOI: 10.1186/s13102-024-00843-3