scholarly journals Clinician views of patient decisional conflict when deciding between dialysis and conservative management: Qualitative findings from the PAlliative Care in chronic Kidney diSease (PACKS) study

2017 ◽  
Vol 31 (10) ◽  
pp. 921-931 ◽  
Author(s):  
Helen Noble ◽  
Kevin Brazil ◽  
Aine Burns ◽  
Sarah Hallahan ◽  
Charles Normand ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
Decision Making ◽  
Palliative Care ◽  
United Kingdom ◽  
Kidney Disease ◽  
Conservative Management ◽  
Treatment Options ◽  
Decisional Conflict ◽  
The United Kingdom ◽  
The Impact

Background: Only a paucity of studies have addressed clinician perspectives on patient decisional conflict, in making complex decisions between dialysis and conservative management (renal supportive and palliative care). Aim: To explore clinician views on decisional conflict in patients with end-stage kidney disease. Design: Interpretive, qualitative study. Setting and participants: As part of the wider National Institute for Health Research, PAlliative Care in chronic Kidney diSease study, semi-structured interviews were conducted with clinicians (nephrologists n = 12; 7 female and clinical nurse specialists n = 15; 15 female) across 10 renal centres in the United Kingdom. Interviews took place between April 2015 and October 2016 and a thematic analysis of the interview data was undertaken. Results: Three major themes with associated subthemes were identified. The first, ‘Frequent changing of mind regarding treatment options’, revealed how patients frequently altered their treatment decisions, some refusing to make a decision until deterioration occurred. The second theme, ‘Obligatory beneficence’, included clinicians helping patients to make informed decisions where outcomes were uncertain. In weighing up risks and benefits, and the impact on patients, clinicians sometimes withheld information they thought might cause concern. Finally, ‘Intricacy of the decision’ uncovered clinicians’ views on the momentous and brave decision to be made. They also acknowledged the risks associated with this complex decision in giving prognostic information which might be inaccurate. Limitations: Relies on interpretative description which uncovers constructed truths and does not include interviews with patients. Conclusion: Findings identify decisional conflict in patient decision-making and a tension between the prerequisite for shared decision-making and current clinical practice. Clinicians also face conflict when discussing treatment options due to uncertainty in equipoise between treatments and how much information should be shared. The findings are likely to resonate across countries outside the United Kingdom.

Incidence, Determinants, and Outcome of Chronic Kidney Disease After Adult Heart Transplantation in the United Kingdom

2012 ◽  
Vol 93 (11) ◽  
pp. 1151-1157 ◽  
Author(s):  
Helen L. Thomas ◽  
Nicholas R. Banner ◽  
Cara L. Murphy ◽  
Retha Steenkamp ◽  
Rhiannon Birch ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
United Kingdom ◽  
Kidney Disease ◽  
Heart Transplantation ◽  
Adult Heart ◽  
The United Kingdom

scholarly journals The Impact Of COVID-19 On Out-Of-Hours Adult Hospice Care: An Online Survey

2021 ◽  
Author(s):  
Felicity Hasson ◽  
Paul Slater ◽  
Anne Fee ◽  
Tracey McConnell ◽  
Sheila Payne ◽  
...  
Keyword(s):  
Palliative Care ◽  
United Kingdom ◽  
Personal Protective Equipment ◽  
Protective Equipment ◽  
Community Based ◽  
Out Of Hours ◽  
Care Services ◽  
The United Kingdom ◽  
Palliative Care Services ◽  
The Impact

Abstract BackgroundGlobally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services.Methods A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n=150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19 and data were analysed thematically.ResultsEighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n=21) and infection control screening (n=12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. Conclusions Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.

scholarly journals Summarizing Patient Preferences for the Competitive Landscape of Multiple Sclerosis Treatment Options

2020 ◽  
Vol 40 (2) ◽  
pp. 198-211 ◽  
Author(s):  
Marcel F. Jonker ◽  
Bas Donkers ◽  
Lucas M.A. Goossens ◽  
Renske J. Hoefman ◽  
Lea J. Jabbarian ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
United Kingdom ◽  
Patient Preferences ◽  
Treatment Options ◽  
Mixed Logit ◽  
Principal Component ◽  
Choice Data ◽  
Individual Level ◽  
The United Kingdom ◽  
The Impact

Objective. Quantitatively summarize patient preferences for European licensed relapsing-remitting multiple sclerosis (RRMS) disease-modifying treatment (DMT) options. Methods. To identify and summarize the most important RRMS DMT characteristics, a literature review, exploratory physician interviews, patient focus groups, and confirmatory physician interviews were conducted in Germany, the United Kingdom, and the Netherlands. A discrete choice experiment (DCE) was developed and executed to measure patient preferences for the most important DMT characteristics. The resulting DCE data ( n=799 and n=363 respondents in the United Kingdom and Germany, respectively) were analyzed using Bayesian mixed logit models. The estimated individual-level patient preferences were subsequently summarized using 3 additional analyses: the quality of the choice data was assessed using individual-level R2 estimates, individual-level preferences for the available DMTs were aggregated into DMT-specific preference shares, and a principal component analysis was performed to explain the patients’ choice process. Results. DMT usage differed between RRMS patients in Germany and the United Kingdom but aggregate patient preferences were similar. Across countries, 42% of all patients preferred oral medications, 38% infusions, 16% injections, and 4% no DMT. The most often preferred DMT was natalizumab (26%) and oral DMT cladribine tablets (22%). The least often preferred were mitoxantrone and the beta-interferon injections (1%–3%). Patient preferences were strongly correlated with patients’ MS disease duration and DMT experience, and differences in patient preferences could be summarized using 8 principle components that together explain 99% of the variation in patients’ DMT preferences. Conclusion. This study summarizes patient preferences for the included DMTs, facilitates shared decision making along the dimensions that are relevant to RRMS patients, and introduces methods in the medical DCE literature that are ideally suited to summarize the impact of DMT introductions in preexisting treatment landscapes.

scholarly journals Chronic kidney disease management in the United Kingdom: NEOERICA project results

2007 ◽  
Vol 72 (1) ◽  
pp. 92-99 ◽  
Author(s):  
P.E. Stevens ◽  
D.J. O'Donoghue ◽  
S. de Lusignan ◽  
J. Van Vlymen ◽  
B. Klebe ◽  
...  
Keyword(s):  
Chronic Kidney Disease ◽  
United Kingdom ◽  
Kidney Disease ◽  
Disease Management ◽  
The United Kingdom

MO1041AWARENESS, KNOWLEDGE AND PERCEPTION OF CHRONIC KIDNEY DISEASE PATIENTS AT RENAL MEDICINE OUTPATIENTS' CLINIC, SINGLE CENTRE EXPERIENCE

2021 ◽  
Vol 36 (Supplement_1) ◽  
Author(s):  
Fatma AlRahbi ◽  
Issa Alsalmi
Keyword(s):  
Chronic Kidney Disease ◽  
Decision Making ◽  
Kidney Disease ◽  
Family Involvement ◽  
Health Knowledge ◽  
Treatment Options ◽  
Informed Decision ◽  
Health Seeking ◽  
Medicine Department ◽  
Early Access

Abstract Background and Aims Chronic kidney disease (CKD) is a major cause of morbidity and mortality in the Sultanate. Many preventive measures have focused on early detection and education. Hence, awareness and education of kidney disease influence positively its medical management and diminish significantly the economic burden on public health. Knowledge of CKD and risk factors increases the perception of being at high risk and increasing health seeking behaviour. We conducted a longitudinal survey at Renal Medicine Department among our patients to assess the level of awareness, knowledge of CKD and the treatment options. Method We used a pretested structured questionnaire to collect information on socio-demographic and knowledge of patients attending Renal Medicine Department. The questionnaire was distributed to all CKD patients of at least one-year duration after their diagnosis. Results A total of 200 patients completed this study, mainly from the capital region. The mean age was 50 (SD 17.1) years for male participants and 42.3 (SD 16) years for female participants. The majority (74.3%) knew the reason for their referral to nephrologist. 31% of the patients with CKD reported their shock when informed about their kidney status by the nephrologist at the first time. Two third (64%) of patients reported having no knowledge of their kidney function and 50% of them were not aware about renal replacement therapy options. 52.1% of participants refused for early access creation. 22% of them expressed their refusal for the early access creation as they have no uremic signs. Finally, 60% of the study participants had no family member attending with them during their clinic visit. Conclusion Patients and their family should receive enough information and education regarding the nature of renal disease and the options for the treatment to allow them to make an informed decision about the management of their CKD. Awareness of the factors associated with a well-informed-decision making in the treatment of CKD can provide health professionals with evidence on how best to deliver education programs for patients and their families. It may also enhance communication and improve the capacity for patient and family involvement in shared decision making.

In our own words …

2018 ◽  
Author(s):  
Ros Scott
Keyword(s):  
United States ◽  
Palliative Care ◽  
United Kingdom ◽  
United States Of America ◽  
Care Services ◽  
The United Kingdom ◽  
Palliative Care Services ◽  
Hospice And Palliative Care ◽  
Original Story ◽  
The Impact

This chapter explores the experience of volunteers in hospice and palliative care their own words. Frequently we hear about the work of volunteers from paid staff, from research, but not always from the volunteers themselves in their own words. In this chapter we have tried to explore what happens in the unique place that volunteers have within hospice and palliative care services; somewhere between staff, patients, and families. The stories in this chapter have all come directly from volunteers from Italy, Australia, Romania, India, United States of America (USA), and the United Kingdom (UK) in their own words. Translation, where required, has tried to remain true to the original story and all volunteers have agreed the translation to ensure that it has not changed the essence of the story. Volunteers have described their roles, what volunteering means to them, and the impact that it has on their lives.

Sign in / Sign up

Export Citation Format

Share Document