Patient-reported outcomes (PROs), such as symptoms, health- related quality of life (HRQOL), or satisfaction with care, are reported directly by the patient, without interpretation by the clinician or a family member/caregiver. These outcomes inform clinicians and researchers about patient’s challenges and sources of suffering, and they provide information that supplements “traditional” clinical outcomes, such as mortality or hospitalization. PROs are valued by patients, clinicians, and policy-makers. They inform therapeutic choices, disease management practices, reimbursement decisions, and health policy.
Therefore, in this study we will validate these instruments within this patient population. We will recruit a total of 450-500 patients (both patients on dialysis, with earlier stages of CKD and kidney transplant recipients). We are administering a number of validated, standard questionnaires that are currently used to assess the complex dimensions emotional distress along with the PROMIS questionnaire:
- Kidney Disease Quality of Life (KDQoL) questionnaire;
- Patient Health Questionnaire (PHQ9) for depression;
- General Anxiety Disorder (GAD7) for anxiety;
- Social Difficulties Inventory (SDI).