Patients need to be involved in setting research priorities to ensure research addresses the needs and outcomes of importance to patients. It is important to ensure the patient’s voice is heard so that research reflects the whole person rather than just the disease.
For examples research priority setting partnerships in CKD have expanded the research agenda to include the following topics:
- Aetiology
- Diagnosis
- Primary and secondary prevention
- Progression of the disease
- Management and treatment
- Causes and treatment of symptoms (sleep, fatigue, depression and anxiety, sexual dysfunction)
- Prognosis
- Complications
- Health services
- Alternative treatment
- Diet
- Exercise and lifestyle
- Psychological matters and knowledge
- Economic considerations and education.
Recent studies have determined research priorities in several kidney disease domains.
1. Effective new interventions and treatments to prevent development and progression.
2. Impact of diet on CKD as well as the benefit and risk regarding QoL.
3. Causes and treatment of symptoms of CKD to improve QoL.
4. Health information and communication to improve outcome.
5. The impact of lifestyle factors on development, progression and QoL.
1. Enhancing communication between patients and health professionals/providers.
2. Dialysis modality options and the impact on QoL and mortality.
3. Causes, treatment, and prevention of itching.
4. Strategies to increase transplantation.
5. Psychological and social impact on patients and their circle as well as ways to reduce.
1. Treatments to slow or prevent progression of ADPKD hence improving QoL.
2. Who would benefit from early treatment.
3. Best ways to organise care of ADPKD to improve outcomes.
4. Effect of pregnancy on women.
5. Benefits and harms of drugs used for the management of ADPKD.