Short summary

Patients with chronic kidney disease are often treated more and longer than they prefer due to recommendations from the clinicians. Advance care planning is a process that supports adults in understanding and sharing their values, life goals and preferences regarding medical care.

Aim

1) Investigate patients with chronic kidney disease and their relatives' experiences of advance care planning

2) Identify current practice and attitude to advance care planning among

Rationale

Treatment options and planning of life with chronic kidney disease can be difficult because, often, patients do not know the prognosis of the illness and the status of their health in the future. Patients often blindly follow the clinicians' recommendations and are treated to a greater extent than they prefer. Advance care planning is a process that supports adults in any age and stage of illness in understanding and sharing their values, life goals and preferences regarding medical care.

1) Investigate patients with chronic kidney disease and their relatives' experiences and perceptions of Advance care planning, with a view to better addressing their needs related to treatment choices and preferences for family life and everyday life.

2) Identify current practice and attitudes to Advance care planning among health care professionals in the field of nephrology in Denmark.

3) Develop and pilot test an Advance care planning intervention for nephrology patients and their relatives in Denmark.

Description of the cohort

Sub study 1: An interview study among patients with chronic kidney disease and their families. Participants will be Danish-speaking patients with chronic kidney disease who are considering their treatments options (N = 12). Close relatives will also be invited (N = 12). Close relatives will be individuals who the patients consider as their close relatives. Patients with chronic kidney disease undergoing haemodialysis or peritoneal dialysis and their relatives will be excluded. All participants will be aged > 18 years.

Sub study 2: A national survey with a cross sectional design among nurses and physicians in nephrology. It will be sent out to nurses and physicians (n=200-300) employed at nephrology departments in Denmark. Development of an advance care planning intervention: The intervention will be developed in cooperation with the User Council and clinicians in the Department of Nephrology, Odense University Hospital.

Data and biological material

In sub-study 1, interviews will be conducted among patients with chronic kidney disease and their close family members to achieve new knowledge about experiences, expectations and needs related to treatment decisions and advance care planning.

Sub-study 2 will be a national survey with a cross sectional design to identify Danish nephrology health care professionals attitudes to advance care planning and the status of current advance care planning practice in Denmark.