scholarly journals Using patient-reported outcome measures during the management of patients with end-stage kidney disease requiring treatment with haemodialysis (PROM-HD): a qualitative study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e052629
Author(s):  
Nicola Elzabeth Anderson ◽  
Christel McMullan ◽  
Melanie Calvert ◽  
Mary Dutton ◽  
Paul Cockwell ◽  
...  

ObjectivesPatients undergoing haemodialysis report elevated symptoms and reduced health-related quality of life, and often prioritise improvements in psychosocial well-being over long-term survival. Systematic collection and use of patient-reported outcomes (PROs) may help support tailored healthcare and improve outcomes. This study investigates the methodological basis for routine PRO assessment, particularly using electronic formats (ePROs), to maximise the potential of PRO use, through exploration of the experiences, views and perceptions of patients and healthcare professionals (HCPs) on implementation and use of PROs in haemodialysis settings.Study designQualitative study.Setting and participantsSemistructured interviews with 22 patients undergoing haemodialysis, and 17 HCPs in the UK.Analytical approachTranscripts were analysed deductively using the Consolidated Framework for Implementation Research (CFIR) and inductively using thematic analysis.ResultsFor effective implementation, the potential value of PROs needs to be demonstrated empirically to stakeholders. Any intervention must remain flexible enough for individual and aggregate use, measuring outcomes that matter to patients and clinicians, while maintaining operational simplicity. Any implementation must sit within a wider framework of education and support for both patients and clinicians who demonstrate varying previous experience of using PROs and often confuse related concepts. Implementation plans must recognise the multidimensionality of end-stage kidney disease and treatment by haemodialysis, while acknowledging the associated challenges of delivering care in a highly specialised environment. To support implementation, careful consideration needs to be given to barriers and facilitators including effective leadership, the role of champions, effective launch and ongoing evaluation.ConclusionsUsing the CFIR to explore the experiences, views and perceptions of key stakeholders, this study identified key factors at organisational and individual levels which could assist effective implementation of ePROs in haemodialysis settings. Further research will be required to evaluate subsequent ePRO interventions to demonstrate the impact and benefit to the dialysis community.

Healthcare ◽  
2021 ◽  
Vol 9 (11) ◽  
pp. 1432
Author(s):  
Ximena Abarca-Durán ◽  
Isabel María Fernández-Medina ◽  
María del Mar Jiménez-Lasserrotte ◽  
Iria Dobarrio-Sanz ◽  
Ana Lucía Martínez-Abarca ◽  
...  

End-stage kidney disease has a negative impact on patients’ quality of life. People who receive a kidney transplant experience an improvement in many areas of their daily life. Sexuality is a general component of health, which can be affected by end-stage kidney disease and kidney transplant. The aim of this study was to explore and understand the experiences and perspectives of kidney transplant recipients regarding their sexuality. A qualitative study based on Gadamer’s hermeneutic philosophy was carried out. Two focus groups and nine interviews were conducted with 18 kidney transplant recipients. Data were audio-recorded, transcribed, and analyzed with the help of qualitative analysis software. Two main themes emerged from the data: (1) “The impact of a kidney transplant on sexuality”, with the subthemes “sexuality is relegated to the background”, “physical decline acts as a sexual inhibitor”, and “changes in sexual activity following a kidney transplant”; (2) “Sexual education in kidney transplant recipients” with the subthemes “sexuality: a hidden concern amongst kidney transplant recipients” and “talking about sexuality with healthcare professionals”. Sexuality is a frequent concern among kidney transplant recipients. The physiological and emotional changes experienced after kidney transplant exert a great influence on their sexuality. Healthcare professionals rarely discuss sexuality concerns with kidney transplant recipients. Professional sexual education and assistance are necessary to improve sexual health satisfaction of kidney transplant recipients.


Author(s):  
Micaella Sotera Hansen ◽  
Wubshet Tesfaye ◽  
Beena Sewlal ◽  
Bharati Mehta ◽  
Kamal Sud ◽  
...  

2021 ◽  
pp. 115076
Author(s):  
Covadonga Díez-Sanmartín ◽  
Antonio Sarasa-Cabezuelo ◽  
Amado Andrés Belmonte

Author(s):  
Wouter R Verberne ◽  
Iris D van den Wittenboer ◽  
Carlijn G N Voorend ◽  
Alferso C Abrahams ◽  
Marjolijn van Buren ◽  
...  

Abstract Background Non-dialytic conservative care (CC) has been proposed as a viable alternative to maintenance dialysis for selected older patients to treat end-stage kidney disease (ESKD). This systematic review compares both treatment pathways on health-related quality of life (HRQoL) and symptoms, which are major outcomes for patients and clinicians when deciding on preferred treatment. Methods We searched PubMed, Embase, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL) Plus and PsycINFO from inception to 1 October 2019 for studies comparing patient-reported HRQoL outcomes or symptoms between patients who chose either CC or dialysis for ESKD. Results Eleven observational cohort studies were identified comprising 1718 patients overall. There were no randomized controlled trials. Studies were susceptible to selection bias and confounding. In most studies, patients who chose CC were older and had more comorbidities and worse functional status than patients who chose dialysis. Results were broadly consistent across studies, despite considerable clinical and methodological heterogeneity. Patient-reported physical health outcomes and symptoms appeared to be worse in patients who chose CC compared with patients who chose dialysis but had not yet started, but similar compared with patients on dialysis. Mental health outcomes were similar between patients who chose CC or dialysis, including before and after dialysis start. In patients who chose dialysis, the burden of kidney disease and impact on daily life increased after dialysis start. Conclusions The available data, while heterogeneous, suggest that in selected older patients, CC has the potential to achieve similar HRQoL and symptoms compared with a dialysis pathway. High-quality prospective studies are needed to confirm these provisional findings.


2017 ◽  
Vol 44 (4) ◽  
pp. 294-300 ◽  
Author(s):  
Magdalena Jankowska ◽  
Paweł Rudnicki-Velasquez ◽  
Hanna Storoniak ◽  
Przemysław Rutkowski ◽  
Bolesław Rutkowski ◽  
...  

Aim: (1) To describe the whole blood content of thiamine diphosphate (TDP), a biologically active form of vitamin B1 in end-stage kidney disease patients treated with hemodialysis (HD); (2) to establish the impact of a single HD procedure on TDP blood concentrations; and (3) to describe potential explanatory variables influencing TDP dialysis related losses, including dialysis prescription, vitamin B1 dietary intake and supplementation. Methods: Single-center, cross-sectional study in 50 clinically stable maintenance HD patients. The assessment of whole blood TDP with the High Performance Liquid Chromatography method, before and after a single, middle-week dialysis session and analysis of clinical and laboratory parameters potentially influencing TDP status Results: We report a significant difference in TDP levels before and after HD sessions - 42.5 (95% CI 38.7-46.2) μg/L and 23.6 (95% CI 18.9-28.2) μg/L, respectively (p = 0.000). The magnitude of intradialytic TDP changes is highly variable among individuals and is negatively associated only with the body weight of the patients (p < 0.013). Vitamin B1 dietary intake and supplementation do not influence whole blood TDP and dialysis-related loss of TDP. Conclusions: TDP, a bioactive compound of vitamin B1, is substantially lost during the HD procedure, and the magnitude of its loss is associated with the patient's body weight but it is not influenced by vitamin B1 dietary intake and standard supplementation dose.


2020 ◽  
Vol 6 (3) ◽  
pp. 1-11
Author(s):  
Issa Al Salmi ◽  

End-Stage Kidney Disease (ESKD) is a serious and irreversible condition. Understanding the impact of ESKD and its treatment on an individual's Quality of Life (QoL) is important.


2020 ◽  
pp. 1-3
Author(s):  
P. C Sandhya ◽  
Himanshu Sharma ◽  
M. Gupta

ABSTRACT Background: Malnutrition is a common problem in patients with end-stage-kidney-disease (ESKD) and is a strong risk factor for morbidity and mortality. ESKDis a maladaptive metabolic state and patients need to increase their dietary protein and calorie intake especially when on maintenance dialysis. In a developing country like India, the economic and knowledge barrier affects the diet of the patient. In this study we assessed the prevalence of malnutrition and the impact of dietary counselling on improvement in nutritional status of the patient. Method: This study enrolled patients undergoing maintenance hemodialysis in our centre between June 2017 and June 2019. The prevalence of malnutrition was assessed by Subjective Global Assessment (SGA). Dietary history was recorded with a 24-hour dietary recall method. The patient was then periodically counselled regarding adequate dietary protein and calorie requirement and was re-assessed for the prevalence of malnutrition at the end of 6 months. Results: The mean age of study cohort was 38.76±10.85 years and 64 % were male.Hypertension (38.89%) and Diabetes (11.11%) were the most common co-morbid illnesses.The prevalence of PEW was 92% at baseline and 86% at the end of 6 months of follow up. There was a significant increase in BMI from 19.97 to 20.38 (p=0.022). Most of the study patients were from very low socioeconomic status (78% Class V modified Prasad's scale). Conclusions: There is a very high prevalence of protein-energy malnutrition among ESKD patients on maintenance haemodialysis. Nutritional counselling resulted in statistically significant improvement in the prevalence of malnutrition. Hence,nutritional counselling must be given regularly to patients with kidney disease.


2020 ◽  
Vol 21 (1) ◽  
Author(s):  
Michael Matthews ◽  
Joanne Reid ◽  
Clare McKeaveney ◽  
Robert Mullan ◽  
Stephanie Bolton ◽  
...  

Abstract Background Patients with end-stage kidney disease, receiving haemodialysis rely increasingly on informal carers to help manage their debilitating chronic disease. Informal carers may experience a negative impact on their quality of life exacting a toll on their physical, social and emotional well-being. Informal carers of patients with end-stage kidney disease receiving haemodialysis have significant unmet needs which may include physical and psychological issues, financial disadvantage and social isolation. Poor experiences of informal carers may also impact the experience of the patients for whom they care. The needs of this group of informal caregivers have been largely neglected, with little emphasis placed on supportive interventions that might assist and support them in their caring role. The aim of this study is therefore to explore the experiences and unmet needs of informal carers of people with end-stage kidney disease receiving haemodialysis and develop a psychosocial intervention to support them in their caring role. Methods This qualitative study will include a systematic review, semi-structured interviews with 30 informal carers and focus groups with renal health care professionals. Perceptions of care provision, caregiving experiences as well as contextual factors impacting the design and delivery of a psychosocial intervention for informal carers of patients with end-stage kidney disease, will be explored and will inform the development of a supportive intervention. Discussion The needs of informal carers of patients with end-stage kidney disease have been neglected with little emphasis placed on supportive interventions that might assist and support this group in their care giving role. This is in contrast to other chronic disease groups such as stroke, cancer and dementia. In these conditions well developed supportive interventions have significantly improved outcomes in regard to informal caregivers’ preparedness, competence, positive emotions and psychological well-being in terms of informal care provision. Support interventions could potentially improve the quality of life of those informal carers who provide care to patients with end-stage kidney disease receiving haemodialysis.


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