scholarly journals Renal Manifestations of Fabry Disease: A Narrative Review

2021 ◽  
Vol 8 ◽  
pp. 205435812098562
Author(s):  
Cassiano Augusto Braga Silva ◽  
José A. Moura-Neto ◽  
Marlene Antônia dos Reis ◽  
Osvaldo Merege Vieira Neto ◽  
Fellype Carvalho Barreto
Keyword(s):  
Fabry Disease ◽  
Specific Treatment ◽  
Narrative Review ◽  
Decision Making Process ◽  
Formal Tool ◽  
General Aspects ◽  
Progressive Accumulation ◽  
Source Of Information ◽  
Worse Prognosis

Purpose of review: In this narrative review, we describe general aspects, histological alterations, treatment, and implications of Fabry disease (FD) nephropathy. This information should be used to guide physicians and patients in a shared decision-making process. Source of information: Original peer-reviewed articles, review articles, and opinion pieces were identified from PubMed and Google Scholar databases. Only sources in English were accessed. Methods: We performed a focused narrative review assessing the main aspects of FD nephropathy. The literature was critically analyzed from a theoretical and contextual perspective, and thematic analysis was performed. Key findings: FD nephropathy is related to the progressive accumulation of GL3, which occurs in all types of renal cells. It is more prominent in podocytes, which seem to play an important role in the pathogenesis of this nephropathy. A precise detection of renal disorders is of fundamental importance because the specific treatment of FD is usually delayed, making reversibility unlikely and leading to a worse prognosis. Limitations: As no formal tool was applied to assess the quality of the included studies, selection bias may have occurred. Nonetheless, we have attempted to provide a comprehensive review on the topic using current studies from experts in FD and extensive review of the literature.

scholarly journals The Potential Burden of Home Dialysis on Patients and Caregivers: A Narrative Review

2019 ◽  
Vol 6 ◽  
pp. 205435811989333 ◽  
Author(s):  
Sabriella Jacquet ◽  
Emilie Trinh
Keyword(s):  
Quality Of Life ◽  
Sleep Disturbances ◽  
Financial Burden ◽  
Adverse Outcomes ◽  
Narrative Review ◽  
Original Research ◽  
Dialysis Modality ◽  
Home Dialysis ◽  
Formal Tool

Purpose of review: Home dialysis modalities offer several benefits for patients with end-stage kidney disease when compared with facility-based thrice-weekly hemodialysis. To increase uptake of home dialysis, many centers are encouraging a “home-first” approach. However, it is important to appreciate that “one size may not fit all” and that dialysis modality selection is a complex decision that needs to be individualized. The purpose of this review was to explore aspects associated with home dialysis that may be associated with burden for patients and their caregivers and to discuss strategies to alleviate these concerns. Sources of information: Original research articles were identified from PubMed using search terms “peritoneal dialysis,” “home hemodialysis,” “home dialysis,” “barriers,” “quality of life” and “burden.” Methods: We performed a focused narrative review examining potential sources of burden with home dialysis therapies after conducting a critical appraisal of the literature and identifying the major recurring themes. Key findings: Home dialysis is associated with burden for certain patients. Indeed, some patients may experience ongoing concerns regarding the risks of adverse events and of inadequately performing dialysis on their own. Psychosocial issues affecting quality of life may also arise and include fear of social isolation, sleep disturbances, perceived financial burden, anxiety, and fatigue. Patients who depend on a caregiver may worry about creating a stressful home environment for their close ones. Furthermore, the demands associated with being a caregiver may lead to psychosocial distress in the caregivers themselves. All these factors may lead to burnout and consequently, therapy discontinuation necessitating an unplanned transition to in-center hemodialysis leading to adverse outcomes. However, certain strategies may help alleviate burden especially if concerns are identified early on. Limitations: As we did not apply any formal tool to assess the quality of the studies included, selection bias may have occurred. Nonetheless, we have attempted to provide a comprehensive review on the topic using numerous diverse studies and extensive review of the literature. Implications: Future studies should focus on better identifying patient priorities and strategies to facilitate dialysis modality selection and improve quality of life.

Selection by Publication in Economics

2005 ◽  
Vol 55 (3) ◽  
pp. 255-269 ◽  
Author(s):  
András Simonovits
Keyword(s):  
Selection Process ◽  
Professional Standards ◽  
Publication Process ◽  
Entry Costs ◽  
Scientific Papers ◽  
Financial Interests ◽  
Source Of Information

According to the dominant view, the quality of individual scientific papers can be evaluated by the standard of the journal in which they are published. This paper attempts to demonstrate the limits of this view in the field of economics. According to our main findings, a publication frequently serves as a signal of high professional standards rather than as a source of information; referees and editors frequently reject good papers and accept bad ones; citation indices only partially balance the distortions deriving from the selection process; there are essential “entry costs” to the publication process. Moreover, financial interests of publishers may contradict scientific interests. As long as leading economists do not give voice to their dissatisfaction, there is no hope for any reform of the selection process.

Quality of Life and Mental Health of Infertile Women Affected by Endometriosis: A Narrative Review

2019 ◽  
Vol 15 (4) ◽  
pp. 238-244
Author(s):  
Cristina Zarbo ◽  
Agostino Brugnera ◽  
Rita Secomandi ◽  
Ilario Candeloro ◽  
Chiara Malandrino ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Narrative Review ◽  
Stress Perception ◽  
Infertile Women ◽  
Assisted Reproductive Treatment ◽  
General Quality ◽  
The Impact ◽  
Test Outcomes

Objective: Infertility has a severe impact on quality of life and mental health. This condition could be exacerbated by the existence of comorbid medical disease, like endometriosis. The aim of this critical narrative review is the examination of the state of the art about the quality of life and mental health in infertile women with endometriosis. Methods: We performed a rigorous and systematic search for studies on multiple electronic databases. A total of 6 papers were included in the review and were subjected to interpretative and critical narrative synthesis. Results and Discussion: Major findings are resumed in the following points: (a) infertile women with endometriosis when compared to infertile ones without endometriosis show higher depression, stress perception, and anxiety, and lower general quality of life; (b) quality of life specifically related to infertility is similar among women with and without endometriosis and seems to be related to personality and beliefs factors; (c) giving birth to a child is related to better mental quality of life; (d) during assisted reproductive treatment (ART) stimulation, infertile women with endometriosis have a decrease of dysmenorrhea and dyspareunia; (e) satisfaction of ART is related to the number of attempts, treatment accomplishment and pregnancy test outcomes. Clinical implications of these findings and suggestions for future researches were discussed. Conclusion: Concluding, it is crucial to assess the psychological factors related to endometriosis and infertility to reduce the impact of these diseases on quality of life and mental health, provide adequate support to these patients, improve their satisfaction and increase the change to get pregnant.

scholarly journals Children’s Understanding of Informed Assents in Research Studies

Healthcare ◽  
2021 ◽  
Vol 9 (7) ◽  
pp. 871
Author(s):  
Hortense Cotrim ◽  
Cristina Granja ◽  
Ana Sofia Carvalho ◽  
Carlos Cotrim ◽  
Rui Martins
Keyword(s):  
Health Care ◽  
Positive Relationship ◽  
Age Groups ◽  
High Capacity ◽  
Decision Making Process ◽  
Objective Understanding ◽  
Level Of Understanding ◽  
Age And Sex ◽  
Acceptance Of Health Care

The assent procedure reflects an effort to enable the minor to understand, to the degree they are capable of, what their participation in the decision making process would involve. Aims: To evaluate the minors’ ability to understand the information provided to them when obtaining assent and to evaluate the opinion of the parents regarding the importance of asking the child’s assent. Methods: The sample included a total of 52 minors aged between 10 and 17 years who underwent exercise echocardiogram. The Quality of Informed Consent is divided into two parts: Part A was used to measure objective understanding and part B to measure subjective understanding. Results: The results show that the minors have a high capacity to understand the information given to them when asking for assent. A positive relationship was found between the two parts of the questionnaire. No statistically significant relationship was found between age and sex and part A and part B or between both age groups (<14 years old and ≥14 years old) and the measure. In the case of the parents, 96.6% of parents consider assent as an advantage for the child’s acceptance of health care. The opinion of the parents is not related to the age, sex or level of schooling. Conclusion: Minors showed a substantial level of understanding regarding the information provided to them. The parents considered the implementation of assent fundamental to the child’s acceptance of health care.

scholarly journals The Quality of Life Definition: Where Are We Going?

Uro ◽  
2021 ◽  
Vol 1 (1) ◽  
pp. 14-22
Author(s):  
Tommaso Cai ◽  
Paolo Verze ◽  
Truls E. Bjerklund Johansen
Keyword(s):  
Quality Of Life ◽  
Extra Dimension ◽  
Sexual Partner ◽  
Therapeutic Approach ◽  
Well Being ◽  
Narrative Review ◽  
Laboratory Findings

The quality of life (QoL) concept now includes new aspects related to patients’ well-being because QoL has become more of a personal perception than an an objective and measurable entity. Here, we discuss the principal aspects of QoL-related aspects in urology and andrology by using a narrative review. Some aspects concerning the QoL are essential when managing uro-andrological patients. The aim of treatments should not only include the absence of disease or symptoms relief but also the improvement of a patient’s QoL with regard to his/her internal status and relationship with others. In this sense, any therapeutic approach should be based on the patient’s perspectives and not only on the instrumental and laboratory findings. Finally, we discussed the role of a patient’s sexual partner adding an extra dimension to the patient-centerd approach as part of the QoL concept in andrology.

scholarly journals A Review of Evidence-Based Recommendations for Pericoronitis Management and a Systematic Review of Antibiotic Prescribing for Pericoronitis among Dentists: Inappropriate Pericoronitis Treatment Is a Critical Factor of Antibiotic Overuse in Dentistry

2021 ◽  
Vol 18 (13) ◽  
pp. 6796
Author(s):  
Jan Schmidt ◽  
Martina Kunderova ◽  
Nela Pilbauerova ◽  
Martin Kapitan
Keyword(s):  
Systematic Review ◽  
Local Therapy ◽  
Critical Factor ◽  
Antibiotic Use ◽  
Narrative Review ◽  
Antibiotic Prescribing ◽  
Evidence Based ◽  
Antibiotic Overuse ◽  
Clinically Significant

This work provides a narrative review covering evidence-based recommendations for pericoronitis management (Part A) and a systematic review of antibiotic prescribing for pericoronitis from January 2000 to May 2021 (Part B). Part A presents the most recent, clinically significant, and evidence-based guidance for pericoronitis diagnosis and proper treatment recommending the local therapy over antibiotic prescribing, which should be reserved for severe conditions. The systematic review includes publications analyzing sets of patients treated for pericoronitis and questionnaires that identified dentists' therapeutic approaches to pericoronitis. Questionnaires among dentists revealed that almost 75% of them prescribed antibiotics for pericoronitis, and pericoronitis was among the top 4 in the frequency of antibiotic use within the surveyed diagnoses and situations. Studies involving patients showed that antibiotics were prescribed to more than half of the patients with pericoronitis, and pericoronitis was among the top 2 in the frequency of antibiotic use within the monitored diagnoses and situations. The most prescribed antibiotics for pericoronitis were amoxicillin and metronidazole. The systematic review results show abundant and unnecessary use of antibiotics for pericoronitis and are in strong contrast to evidence-based recommendations summarized in the narrative review. Adherence of dental professionals to the recommendations presented in this work can help rapidly reduce the duration of pericoronitis, prevent its complications, and reduce the use of antibiotics and thus reduce its impact on patients' quality of life, healthcare costs, and antimicrobial resistance development.

scholarly journals Communication in decision aids for stage I–III colorectal cancer patients: a systematic review

BMJ Open ◽  
2021 ◽  
Vol 11 (4) ◽  
pp. e044472
Author(s):  
Saar Hommes ◽  
Ruben Vromans ◽  
Felix Clouth ◽  
Xander Verbeek ◽  
Ignace de Hingh ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Systematic Review ◽  
Decision Making ◽  
Systematic Reviews ◽  
Decision Aids ◽  
Specific Treatment ◽  
Cochrane Library ◽  
Plain Language ◽  
Patient Decision

ObjectivesTo assess the communicative quality of colorectal cancer patient decision aids (DAs) about treatment options, the current systematic review was conducted.DesignSystematic review.Data sourcesDAs (published between 2006 and 2019) were identified through academic literature (MEDLINE, Embase, CINAHL, Cochrane Library and PsycINFO) and online sources.Eligibility criteriaDAs were only included if they supported the decision-making process of patients with colon, rectal or colorectal cancer in stages I–III.Data extraction and synthesisAfter the search strategy was adapted from similar systematic reviews and checked by a colorectal cancer surgeon, two independent reviewers screened and selected the articles. After initial screening, disagreements were resolved with a third reviewer. The review was conducted in concordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. DAs were assessed using the International Patient Decision Aid Standards (IPDAS) and Communicative Aspects (CA) checklist.ResultsIn total, 18 DAs were selected. Both the IPDAS and CA checklist revealed that there was a lot of variation in the (communicative) quality of DAs. The findings highlight that (1) personalisation of treatment information in DAs is lacking, (2) outcome probability information is mostly communicated verbally and (3) information in DAs is generally biased towards a specific treatment. Additionally, (4) DAs about colorectal cancer are lengthy and (5) many DAs are not written in plain language.ConclusionsBoth instruments (IPDAS and CA) revealed great variation in the (communicative) quality of colorectal cancer DAs. Developers of patient DAs should focus on personalisation techniques and could use both the IPDAS and CA checklist in the developmental process to ensure personalised health communication and facilitate shared decision making in clinical practice.

scholarly journals Clinical evaluation of pulmonary hypertension using patient-reported outcomes: a cross-sectional study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Miguel Ángel Amor-García ◽  
Sara Ibáñez-García ◽  
Xandra García-González ◽  
Teresa Mombiela ◽  
Cristina Villanueva-Bueno ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pulmonary Hypertension ◽  
Clinical Evaluation ◽  
Patient Reported Outcomes ◽  
Specific Treatment ◽  
Tertiary Hospital ◽  
Functional Class ◽  
Cross Sectional ◽  
Patient Reported

Abstract Background Patients with pulmonary hypertension (PH) have progressive and disabling symptoms, as well as a burden of treatments and a difficult clinical evaluation that make health-related quality of life a particularly relevant endpoint in this disease. The objective of the study was to evaluate patient-reported outcomes of patients receiving specific treatment for PH in a tertiary hospital using a specific questionnaire (Cambridge Pulmonary Hypertension Outcome Review-CAMPHOR) in the pharmacy consultation. Methods A cross-sectional, observational, descriptive study was conducted. It included all patients receiving specific treatment for PH in a tertiary hospital in Madrid, Spain. The inclusion period comprised between August to December 2019. CAMPHOR questionnaires containing three domains: symptoms, activities and quality of life were completed by the patients at the pharmacy consultation. Demographic and clinical variables, including WHO Functional Class (WHO FC), PH-specific tests and hemodynamic parameters, were recorded. Non-parametric analyses to assess relations between variables and CAMPHOR domains were performed. Results Thirty-six patients consented to participate in the study and completed the questionnaire. Median scores for symptoms, activities, and quality of life domains were 5.5 (2.5–10), 8.0 (4.5–10.5) and 3.5 (1–7.5), respectively. Statistically significant differences were found in the three domains when comparing by WHO FC, in the activities domain for 6-m walking test and in the quality of life domain for patients who had emergency visits or hospitalizations in the last year. Conclusions The CAMPHOR questionnaire could be useful as a complementary test to achieve an integrated evaluation of PH patients, who could complete it easily during their routine pharmacy visits.

scholarly journals How to Intervene in the Health Management of the Oncological Patient and of Their Caregiver? A Narrative Review in the Psycho-Oncology Field

2021 ◽  
Vol 11 (7) ◽  
pp. 99
Author(s):  
Gian Piero Turchi ◽  
Marta Silvia Dalla Riva ◽  
Luisa Orrù ◽  
Eleonora Pinto
Keyword(s):  
Quality Of Life ◽  
Health Management ◽  
Psychological Treatment ◽  
Management Strategies ◽  
Well Being ◽  
Narrative Review ◽  
Treatment Modalities ◽  
Oncological Patient ◽  
Post Surgery

Starting from statistical data derived from the oncological field, some articles have highlighted the importance of communication in the patient–caregiver dyad and have considered the various roles involved in a cancer diagnosis situation. Thus, the question of how to intervene in terms of “quality of life” from the time of diagnosis to the recovery or death of a cancer patient, beyond the sanitary and physical dimensions, has become relevant. Therefore, the present narrative review aims to offer an overview of the state of the art in terms of the psychological treatment modalities of cancer patients, from the diagnosis to the post-surgery period. A total of 67 articles were collected and analyzed, in relation to (1) psychological constructs employed in the oncological field, (2) intervention models and (3) quality of life and well-being measurement and evaluation tools. We described these articles, differentiating between those focusing on the role of (1) the patient, (2) the caregiver, (3) the patient–caregiver dyad and (4) healthcare professional roles. The oncological diagnosis and its repercussions in the lives of the patient and caregiver were explored and critical aspects that emerged from the literature were highlighted. In conclusion, the analysis allowed some considerations about the need to define research protocols and useful management strategies for increasing the overall health of patients with cancer diagnoses and the people who surround them.

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