scholarly journals Disease Modification in Gout: A Qualitative Study of Gout Expert Rheumatologists

Author(s):  
Jasvinder A Singh

Abstract Objective To examine healthcare provider views of disease modification in gout to potentially derive a provisional set of domains for disease modification in gout. Methods We performed a qualitative nominal group (NG) study with 20 gout experts (15 were authors/expert panel members of the 2012 and/or 2020 ACR gout guidelines, and/or 2015 ACR/EULAR gout classification criteria) about what constitutes “disease modification” in gout – “What sorts of things do you think constitute a change in the course of disease in gout? (positive); What are all the ways in which gout as a disease can be modified?” Results Decrease in gout flares was rated #1 rank in all six NGs as indicative of disease modification in gout, followed by serum urate (SU) lowering, which was rated #1 rank in 1 of the 6 NGs (tied score with flares in one NG). Other components of gout disease modification were to improve quality of life/productivity; restore function; reduce/eliminate pain; reduce tophi burden; and joint preservation or resolution of joint damage. Potential additional components that were not ranked in the top 3 votes within each NG were: Decrease healthcare cost/utilization; cardiovascular/renal morbidity/mortality reduction; and stop urate crystals formation. Conclusion This qualitative study provides a provisional set of domains for disease modification in gout. Future studies for the development of thresholds for disease modification domains, and wider consensus on this definition are needed.

2021 ◽  
Author(s):  
Eva van Diest ◽  
Wendy H Oldenmenger ◽  
Marit Eland ◽  
Walter Taal

Abstract Background Patients with glioblastoma have a short life-expectancy, with median survival rates of nine to twelve months. Providing information about the expected course of disease can be complicated. Therefore, an online tool has been developed. The objective of this tool is to better inform patients and proxies, and decrease their uncertainties and improve their quality of life. This study aims to gather experiences of future end-users, to identify if the tool meets the previously mentioned objectives. Methods This is a qualitative study based on thematic analysis. Interviews were conducted with fifteen patient-proxy dyads. For these interviews, a combined method of think-aloud sessions and semi-structured interviews was used. Audiotapes of these interviews were transcribed verbatim and thematically analyzed. Results The analysis revealed four major themes: unmet information needs, improvement possibilities, effects of the tool and clinical implementation. Participants indicated that this tool could decrease uncertainties and increase their perceived quality of life. Also, they often mentioned that it could have a positive effect on the efficiency and quality of consultations. Conclusion Participants considered this tool to be useful and effective in decreasing uncertainties and improving the quality of life for both patients with glioblastoma and their proxies. Moreover, participants brought up that this tool could positively influence the efficiency and quality of consultations. This could lead to more patient participation and empowerment, and could therefore enhance shared decision making and timely advanced care planning.


Author(s):  
Мария Николаевна Химичева ◽  
Андрей Владимирович Кузьменко ◽  
Владимир Васильевич Кузьменко ◽  
Тимур Асланбекович Гяургиев

Инфекции мочевых путей - наиболее распространённая группа заболеваний в практике врача уролога. Один из представителей является хронический рецидивирующий бактериальный цистит. Данное заболевание встречается во всех возрастных категориях и затрагивает все сферы жизни пациентов. Симптомы, возникающие при обострении хронического бактериального цистита, оказывают негативное влияние на качество жизни, что может приводить к нарушению психоэмоционального состояния больных. Отдельную группу высокого риска в отношении ИНМП составляют пациенты с нарушением углеводного обмена, у которых риск развития различных инфекций выше, чем у людей без подобных нарушений. К факторам, повышающим риск развития ИНМП у больных с нарушением углеводного обмена, относят возраст, компенсацию и наличие хронических осложнений, в первую очередь нефропатии и цистопатии. Человеческий организм функционирует циклически в соответствии с определенными индивидуальными ритмами. Любое хроническое заболевание приводит к рассогласованию процессов, протекающих в различных системах организма, вызывая развитие десинхроноза. Наличие у человека более 1 хронического заболевания утяжеляет течение болезни и приводит к снижению восстановительных способностей организма и сокращению его адаптационного потенциала Urinary tract Infections are the most common group of diseases in the practice of a urologist. One of the representatives is chronic recurrent bacterial cystitis. This disease occurs in all age categories and affects all areas of life of patients. Symptoms that occur with the exacerbation of chronic bacterial cystitis have a negative impact on the quality of life, which can lead to a violation of the psychoemotional state of patients. A separate high-risk group for INMP is patients with impaired carbohydrate metabolism, who have a higher risk of developing various infections than people without such disorders. Factors that increase the risk of developing INMP in patients with impaired carbohydrate metabolism include age, compensation, and the presence of chronic complications, primarily nephropathy and cystopathy. The human body functions cyclically in accordance with certain individual rhythms. Any chronic disease leads to misalignment of the processes occurring in various body systems, causing the development of DS, the Presence of more than 1 chronic disease complicates the course of disease and leads to a decrease in regenerative abilities of the organism and reduce its adaptive capacity


BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e046537
Author(s):  
Sheera Sutherland ◽  
Kirsty E Durley ◽  
Kirsty Gillies ◽  
Margaret Glogowska ◽  
Daniel S Lasserson ◽  
...  

ObjectiveTo explore the impact of the death of a patient in the haemodialysis unit on fellow patients.MethodsWe interviewed patients on dialysis in a tertiary dialysis centre using semistructured interviews. We purposively sampled patients who had experienced the death of a fellow patient. After interviews were transcribed, they were thematically analysed by independent members of the research team using inductive analysis. Input from the team during analysis ensured the rigour and quality of the findings.Results10 participants completed the interviews (6 females and 4 males with an age range of 42–88 years). The four core themes that emerged from the interviews included: (1) patients’ relationship to haemodialysis, (2) how patients define the haemodialysis community, (3) patients’ views on death and bereavement and (4) patients’ expectations around death in the dialysis community. Patients noticed avoidance behaviour by staff in relation to discussing death in the unit and would prefer a culture of open acknowledgement.ConclusionStaff acknowledgement of death is of central importance to patients on haemodialysis who feel that the staff are part of their community. This should guide the development of appropriate bereavement support services and a framework that promotes the provision of guidance for staff and patients in this unique clinical setting. However, the authors acknowledge the homogenous sample recruited in a single setting may limit the transferability of the study. Further work is needed to understand diverse patient and nurse experiences and perceptions when sharing the knowledge of a patient’s death and how they react to loss.


Author(s):  
Amparo Talens ◽  
Mercedes Guilabert ◽  
Blanca Lumbreras ◽  
María Teresa Aznar ◽  
Elsa López-Pintor

Lack of adherence constitutes one of the most important challenges in patients undergoing treatment with oral antineoplastic drugs (ANEO). Understanding cancer patients’ experiences with respect to their medication is key for optimizing adherence and therapeutic results. We aimed to assess the medication experience (ME) in patients with cancer in treatment with ANEO, to describe the barriers and facilitators related to the disease and its treatment and to compare them with the healthcare professionals’ perspectives. We carried out an exploratory qualitative study in the University Hospital of San Juan de Alicante, Spain. Three focus groups and two nominal group discussions were conducted with 23 onco-hematological patients treated with ANEO and 18 health professionals, respectively. The data were analyzed using content analyses and were eventually triangulated. The most impactful aspects in patients’ ME were the presence of adverse effects; lack of information about treatment; beliefs, needs and expectations regarding medications; social and family support; and the relationship with the health professionals. Both patients and professionals agreed on considering the negative side effects and the information about treatment as the main barriers and facilitators of adherence, respectively, although the approaches differed between both profiles. The professionals offered a more technical vision while patients prioritized the emotional burden and motivation associated with the disease and medication. This study allowed us to understand the real-life experiences of patients being treated with ANEO and explore the factors which had an impact on adherence to treatment. This understanding enables professionals to have a positive influence on patients’ behavior and provide individualized care plans. Pharmacists’ assistance is relevant to support patients’ adherence and self-management.


2021 ◽  
pp. 1476718X2096974
Author(s):  
Sara Cervantes ◽  
Anna Öqvist

Preschool teachers and caregivers have a close working relationship as part of a working team to benefit the children in Swedish preschools. In 2011, a new educational reform was introduced according to which preschools became a school form in their own right within the overall educational system in Sweden. The objective of the policy was to strengthen the profession of preschool teachers by affording them clearer responsibility over the quality of educational practices and curriculum work. It also entailed a division of labour between the preschool teachers and caregivers in the working team. The current study explored how Swedish preschool teachers and caregivers positioned themselves in response to these changes in responsibility. In this qualitative study, data were collected from 17 preschool teachers and caregivers via an open-ended questionnaire. Preschool teachers and caregivers viewed themselves as having equal responsibility in the working team. Specifically, preschool teachers upgraded the competence and position of caregivers while downgrading their own professional competence and position. Caregivers downgraded the profession and position of preschool teachers and upgraded their own competence and position to be equal to that of preschool teachers.


2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Inese Stars ◽  
Liene Smane ◽  
Zanda Pucuka ◽  
Ieva Roge ◽  
Jana Pavare

Information on family health-related quality of life (FHRQoL) among families of children with the coronavirus disease 2019 (COVID-19) is limited. This qualitative study explores the impact of pediatric COVID-19 on FHRQoL from the parents’ perspective. Semi-structured interviews were conducted with parents (n = 20) whose children had tested positive for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Inductive thematic analysis revealed the following 10 themes that represented parents’ perception of FHRQoL while taking care of a child with COVID-19: pediatric COVID-19 as a disease with many unknowns; emotional saturation; internal family relationships in the context of “a new experience”; routine household activities and daily regimen while family is in lockdown; plenty of free time; a wide social support network; social stigma associated with COVID-19; different options for work; savings and debts; challenges with family housing and transport availability. Our results show that parents experience multiple effects of pediatric COVID-19 with regard to FHRQoL.


2021 ◽  
pp. 097152312110163
Author(s):  
A. H. M. Kamrul Ahsan ◽  
Peter Walters ◽  
Md. Adil Khan

This study compares the state of city government service delivery for communities living in different areas with different level of affluence in Rajshahi City in Bangladesh. Based on the results of a qualitative study, we found a significant service disparity between the affluent and the poor communities. This disparity is due to the inability of the poor to hold service providers accountable, attributable to a lack of knowledge about services and a lack of social status. Lack of quality monitoring and a marked bias in the quality of interactions between the poor and the affluent contribute to the service disparity This disparity is largely invisible to the poor who, instead of comparing themselves with the affluent citizens, compare themselves with a similar class of people.


2016 ◽  
Vol 17 (4) ◽  
pp. 468-484 ◽  
Author(s):  
John Robert Gallagher ◽  
Anne Nordberg ◽  
Elyse Lefebvre

For nearly three decades, drug courts have provided a rehabilitative approach within the criminal justice system for individuals who have a substance use disorder. The goal of drug courts is to reduce criminal recidivism, and research has consistently suggested that participants that graduate drug court are less likely to recidivate than those who are terminated from the program. This qualitative study adds to the literature by asking drug court participants ( N = 42) their views on the most helpful aspects of the program that support them in graduating and how the program could be more helpful to support them in graduating. Two themes emerged from the data: (1) participants felt that interventions that are common to drug courts, such as drug testing and having frequent contact with the judge, were most helpful in supporting them in graduating the program; (2) participants felt that the agencies that offered treatment for their substance use disorders used punitive tactics and judgmental approaches that compromised the quality of treatment they received, and they felt that this was a barrier to them graduating the program. The findings are discussed in reference to drug court practice.


2021 ◽  
pp. 073346482199686
Author(s):  
Candace L. Kemp ◽  
Alexis A. Bender ◽  
Joy Ciofi ◽  
Jennifer Craft Morgan ◽  
Elisabeth O. Burgess ◽  
...  

Meaningful engagement is an important dimension of quality of life and care for persons living with dementia, including the growing number who reside in assisted living communities. This report presents preliminary findings from an ongoing qualitative study aimed at identifying best care practices to create and maintain meaningful engagement among persons with dementia. Over a 1-year period, we conducted interviews, residents’ record review, and participant observations in four diverse care communities. Our analysis identified four approaches that successfully promote meaningful engagement: (a) knowing the person, (b) connecting with and meeting people where they are, (c) being in the moment, and (d) viewing all encounters as opportunity. Incorporation of these approaches in care routines and adoption by all care partners can promote meaningful engagement, including during crises such as COVID-19.


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