It is well recognized that early kidney transplantation is the best RRT option for many patients with end-stage renal disease (ESRD). However, most patients will need to spend some time on dialysis prior to transplantation or when a transplant fails [1-2-3-4-5]. The duration of the transplant waiting list can be variable, depending on the circumstances of each country. This implies that transition between dialysis modalities will be a reality for the majority of patients, especially those who face a long wait for transplantation or those for whom a kidney transplant is not possible.
Transition of care
A single treatment option may not be adequate throughout a patient's life and many patients will need to change treatment modalities to adapt the treatment to their needs. Changing the dialysis modality is not only about technical optimisation or improving patient survival, but also about the patient's experience of the transition. The reasons for changing a patient's treatment modality should be assessed, taking into account both short and long term benefits and risks.
When shifting to HHD, it is of utmost importance to raise patients’ awareness of their condition through appropriate education. This would also increase their acceptance of the need for RTT throughout their life, while encouraging self care at the same time [1-6-7].
The benefit of HDD
HHD has many advantages:
- Autonomy at home,
- Patients control the flexibility of their dialysis schedule,
- Decreases the mortality and morbidity rates,
- Eliminates transportation to dialysis centers, Reduces travel time/cost,
- Improves the patient’s quality of life, mood, sleep, depression,
- More independence, personal freedom, time for family and community engagement,
- Enhances ability to work,
- Reduces fatigue,
- The patients who benefit from this system feel much less tired.
There is considerable evidence of the benefits of assisted self-care in long-term conditions [8-9]. Lack of health literacy in dialysis patients is associated with poor survival . While self-motivation and patient education can improve care [11-12]. To ensure quality of care is to engage patients as true partners in their own care; self-management is an ambition in "Kidney Health: Delivering Excellence" .
However, a quarter of the patients did not receive any information on any modality before the start of RRT. 44% received no information on home haemodialysis (HHD), 24% received no information on peritoneal dialysis (PD). The majority of those who received information were very satisfied with the information (range from 57% for HHD to 86% for deceased kidney donor transplantation (Tx) . Two-thirds of the patients felt that the decision was shared with the medical team.
When a pre-dialysis information program is developed with patients, 40% of them choose a home dialysis modality . For patients who are already treated with hemodialysis, some learned societies estimate that, 10 to 15% of hemodialysis patients could opt for home care .
Knowing the reasons for having a particular form of RRT will provide a better understanding of the treatment choices made by patients. In the EDITH study, the most important factors influencing modality choice were quality of life, survival and safety (resp. 97.3%, 96.6% and. 92.2% rated as very important). Results were similar by age group, sex, educational level and start of RRT time period [14-17].
An important mechanism to ensure that quality of care is maintained is to engage service users as true partners in their own care; self management is an ambition in “Kidney Health: Delivering Excellence” .
In this sense, we decide to include patients in this research work, in a person-centred reaearch model (PCR) [18-19-20].
Person-centered care (PCC) - Patient-centered outcomes research (PCOR) .
The person-centered are : care is (a) delivered with dignity, compassion, and respect; (b) well coordinated; (c) personalized by taking into account clinical, social, emotional, and practical needs; and (d) care enables people to take an active role in their own care [20-21]. It ‘s centred on the individual, and his or her family, rather than on the disease.
Person-centred care requires a partnership between patients and health professionals. The patient-centred approach has been extended to research, with patients and care partners joining with researchers to conduct patient-centred outcomes research (PCOR). PCOR helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options. I’s inclusive of an individual's preferences, autonomy, and needs, focusing on outcomes that people notice and care about such as survival, function, symptoms, and health-related quality of life. PCOR requires the integration of input from patients, caregivers, and researchers to ensure that each project is tailored to the needs of patients and that the results are widely disseminated and useable in health care setting .
We aimed to identify and describe the needs of patients with ESRD and caregivers for RRT with HHD. In addition, we also aimed to conceive and carry out a Therapeutic Education Workshop to help patients to choose renal home hemodialysis.
This project is carried out according to the Training Engineering technique in 4 steps: Analyze, Design, Realize, and Evaluate .