It is widely accepted that a lack of adequate patient and caregiver education is one of many factors that have led to the low rates of home dialysis uptake globally, with most patients receiving in-center dialysis.1 2 Further, research has shown that adequate predialysis education can reduce these crash starts and increase the likelihood of choosing home dialysis or another self-care modality.3
Article: How an ordeal becomes the norm: A qualitative exploration of experiences of self-cannulation in male home haemodialysis patients
An article about a study that explored male HHD patients’ experiences and attitudes towards self-cannulation. https://pubmed.ncbi.nlm.nih.gov/29508505/
“El trabajo social, disciplina clave para las personas con enfermedad renal crónica y sus familiares” (Spanish) (Social work, a key discipline for people with chronic kidney disease and their families)
A video by ALCER about maintaining socialness as a key discipline for patients with CKD and their respective families. https://www.youtube.com/watch?v=eYmfPa0ko5o&t=1204s&ab_channel=ALCERTV
“El papel de la enfermería nefrológica” (Spanish) (The role of nephrology nursing)
A video by ALCER about the role of nephrology nursing.D aniel Gallego, President of the National Federation of ALCER Associations, interviews Rosa Alonso, former supervisor of the Nephrology Service of the Marqués de Valdecilla University Hospital in Santander. https://www.youtube.com/watch?v=OyiWZhkfRXA&t=40s&ab_channel=ALCERTV
Kidney Functions Graphic (Spanish)
A resource/graphic by ALCER about kidney functions. https://personasrenales.org/3265-2/
What does Chronic Kidney Disease mean? (Spanish)
A resource from ALCER about CKD. https://personasrenales.org/erc/
Kidney Replacement Therapy Options (Spanish)
A resource from ALCER about treatments and kidney replacement therapy options. https://personasrenales.org/tratamientos/
Nutrition with CKD (Spanish)
A resource from ALCER about nutrtiion for patients with CKD. https://personasrenales.org/la-alimentacion-en-la-erc/
Physical Activity with CKD (Spanish)
A resource from ALCER about physical activity for patients with CKD. https://personasrenales.org/3675-2/
Psychology and CKD (Spanish)
A resource from ALCER about psychology and patients with CKD. https://personasrenales.org/psicologicos/
Report: Living Better with CKD: Improving the Quality of Life of CKD Patients on Dialysis across Europe
A resource from the European Kidney Patients Federation on improving quality of life for those patients with CKD on dialysis in Europe. https://ekpf.eu/wp-content/uploads/2021/10/Living-better-with-CKD-%E2%80%93-improving-the-quality-of-life-of-CKD-patients-on-dialysis-across-Europe-21-10-21.pdf
EKPF Manifest
A resource from the European Kidney Patients Federation for those with focus on kidney health policy. https://ekpf.eu/wp-content/uploads/2022/10/EKPF-MANIFESTO.pdf
“The Decision 2” (Video) (Spanish)
A video created by ALCER on how different patients and their health professionals have faced the decision of choosing a renal repalcement therapy. https://www.youtube.com/watch?v=RwelZUc_kw0&ab_channel=ALCERTV
“La nutrición un factor indispensable en el manejo de la enfermedad renal crónica” (Spanish) (Nutrition an indispensable factor in the management of CKD)
A video by ALCER about the importance of managing nutrition for CKD patients. https://www.youtube.com/watch?v=W2W4G7hILcg&t=1657s&ab_channel=ALCERTV
“El punto de vista pediátrico, afrontar la enfermedad renal en la infancia” (Spanish) (Pediatric point of view, coping with kidney disease in childhood)
A video by ALCER about coping with kidney disease in childhood, including a pediatric point of view. https://www.youtube.com/watch?v=thCY1jkCEbQ&t=145s&ab_channel=ALCERTV
“El manejo de las emociones en la enfermedad renal crónica” (Spanish) (Managing emotions in CKD)
A video by ALCER about managing emotions for patients with CKD. https://www.youtube.com/watch?v=cAb3XzvkbKU&t=34s&ab_channel=ALCERTV
“Campaña “yo me dializo en casa DP”” (Spanish) (Campaign “I dialyze at home PD”):
A video by ALCER of a campaign they ran for those who dialyze at home with PD. https://www.youtube.com/watch?v=el9PdmgSn3E&ab_channel=ALCERTV
“¿Sabes que la diabetes puede dañar tus riñones?” (Spanish)(Do you know that diabetes can damage your kidneys?
A video by ALCER about the effect of diabetes on kidneys and kidney disease patients. https://www.youtube.com/watch?v=4KHXXka8LIQ&ab_channel=ALCERTV
“Ansiedad anticipatoria en personas con ERC” (Spanish) (anticipatory anxiety in people withkidney conditions):
A video by ALCER about anticipatory anxiety for kidney disease patients. https://www.youtube.com/watch?v=mc5cvyCpWRA&ab_channel=ALCERCastalia
“Compra saludable en el colectivo renal” (Spanish) “Healthy shopping for people with CKD”
A video by ALCER about healthy shopping for kidney disease patients. https://www.youtube.com/watch?v=EF67BPRclLo&ab_channel=ALCERCastalia
“Sexualidad y ERC” (Spanish) “Sex and CKD”
A video by ALCER about sex and chronic kidney disease. https://www.youtube.com/watch?v=srwqFSK8V2Q&ab_channel=ALCERCastalia
“Roles en La Pareja” (Spanish)
A video by ALCER about a partner or couple’s responsibilties or role within kidney disease. https://www.youtube.com/watch?v=FCtODzbcr30&ab_channel=ALCERCastalia
“Qué me hubiera gustado saber de la ERC y nadie me dijo.” (Spanish) “What I would have liked to know about the CKD and nobody told me”
A video by ALCER about reactions from patients of what they would have liked to know about chronic kidney disease that nobody told them. https://www.youtube.com/watch?v=BhTaEzQIuHg&t=10s&ab_channel=ALCERCastalia
“The Decision” (Video) (Spanish)
A video created by ALCER on how different patients and their health professionals have faced the decision of choosing a renal repalcement therapy. https://www.youtube.com/watch?v=5y7znkGmoRk&ab_channel=ALCERTV
Article: Living Well With Kidney Disease and Effective Symptom Management: Consensus Conference Proceedings
An article about the consensus conference proceedings with regard to living well with kidney disease and managing symptoms in effective manners. https://ekpf.eu/wp-content/uploads/2022/09/Living-Well-WIth-Kidney-Disease-and-Effective-Symptom-Management.pdf
Article: Expanding Utilization of Home Dialysis, An Action Agenda From the First International Home Dialysis Roundtable
This article outlines an agenda for action from the First International Home Dialysis Roundtable. https://ekpf.eu/wp-content/uploads/2021/12/Expanding-utilization-of-home-dialysis.pdf
Vascular access handbook for people with kidney disease (abbreviated version)
Abbreviated version of aforementioned resource. https://ekpf.eu/wp-content/uploads/2022/09/Vascular_Handbook_Short_Ed_EN_Def.pdf
Vascular access handbook for people with kidney disease
A resource created by the European Kidney Patient Federation that explains in dept vascular access for kidney disease patients. https://ekpf.eu/wp-content/uploads/2022/09/Vascular_Handbook_EN_Def_compressed.pdf
EKPF Webinars
Educational webinars on differents topic concerning people with kidney conditions, published by the European Kidney Patient Federation. https://ekpf.eu/webinars/
Renal Replacement Treatment Options (Spanish)
This resource focuses on Chronic Kidney Disease, the symptoms, how the patients feel and the functions of the kidney. https://personasrenales.org/wp-content/uploads/2018/07/Enfermedad-renal.pdf
Framework Document on Chronic Kidney Disease (Spanish)
This resource is about the general strategy of the Ministry of Health in Spain for Coping with Chronic Kidney Disease, focused on prevention and early diagnosis, including adequate coping with kidney replacement treatment options. https://www.sanidad.gob.es/organizacion/sns/planCalidadSNS/pdf/Enfermedad_Renal_Cronica_2015.pdf
Article: Patient Education and Choice of Peritoneal Dialysis
An editorial published in the American Journal of Kidney Diseases focuses on patient education and patient choice with peritoneal dialysis. https://www.ajkd.org/action/showPdf?pii=S0272-6386%2816%2930198-6
ISN advocacy letter
The International Society of Nephrology’s Advocacy Newsletter, “Bridging the Gaps,” is published online and viewable here. https://www.theisn.org/in-action/advocacy/advocacy-activities/advocacy-newsletter-bridging-the-gaps/
The ISN Academy
Online access to the International Society of Nephrology’s “The Academy” focuses on kidney health educational resources for global impact. https://academy.theisn.org/
Kidney Beginnings: A Guide to Living with Reduced Kidney Function
A book created by the American Association of Kidney Patients to provide patients with the information they need to take control of their health care options and kidney function. https://aakp.org/product/download-kidney-beginnings-patients-guide-living-reduced-kidney-function/
Understanding your Home Hemodialysis Options
A book created by the American Association of Kidney Patients to provide patients with information on home hemodialysis methods. https://aakp.org/wp-content/uploads/2018/04/HomeHemodialysis_Brochure_LowRes-1.pdf
CONVERSATION STARTER: Questions to Ask Your Healthcare Team About Changing Dialysis Therapies
A tool created by the American Association of Kidney Patients to provide questions for a patient to ask to a healthcare team as they contemplate changing dialysis therapies in their kidney care journey. https://aakp.org/wp-content/uploads/2022/05/ConversationStarters_ChangingTherapies_FINAL_Digital.pdf
Types of Peritoneal Dialysis
A webpage created by the American Associate of Kidney Patients detailing different type of peritoneal dialysis methods. https://aakp.org/types-of-peritoneal-dialysis/
Article: Meaning of empowerment in peritoneal dialysis: focus groups with patients and caregivers
An article that focuses on the meaning of empowerment in peritoneal dialysis through surveying focus groups of patients and caregivers to identify common themes and rationales about empowerment. https://academic.oup.com/ndt/article/35/11/1949/5876536
Newsletter: “Kidney People” (Spanish)
ALCER publishes this newsletter every Thursday with news for kidney patients. https://alcer.org/personas-renales/
“Development of an online patient decision aid for kidney failure treatment modality decisions”
An article about creating an online tool that would help clinicians and patients to support kidney failure treatment modality decision making. https://bmcnephrol.biomedcentral.com/articles/10.1186/s12882-022-02853-0
Setting Up your Dialysis Machine: Video
This resource is a video on how to set up your dialysis machine. https://www.dropbox.com/s/5h9k582k710t5d8/Setting%20up%20your%20Machine.m4v?dl=0
RDNS community HD video for Te Whatu Ora Southern
A video resource from New Zealand on the importance of access to home dialysis, including patient perspectives. https://www.dropbox.com/s/82h0fsbo82fyf9y/Dunedin%20dialysis%20RDNS.mp4?dl=0
- Chan C., Wallace E., Golper T.et al. Exploring barriers and potential solutions in home dialysis: an NKF-KDOQI conference outcomes report. Am J Kidney Dis. 2019; 73: 363-371.[↩]
- Walker R., Howard K., Morton R. Patient education and choice of peritoneal dialysis. Am J Kidney Dis. 2016; 68: 341-343.[↩]
- Goovaerts T., Jadoul M., Goffin E. Influence of a pre-dialysis education programme (PDEP) on the mode of renal replacement therapy. Nephrol Dial Transplant. 2005; 20: 1842-1847.[↩]