Abstract

Summary: Research on supporting the (in)formal caregiver, in enabling autonomy and empowering of persons with a chronic kidney disorder and creating a bridge between primary care and specialized care in hospital settings. 
 Background: Almost half (48%) of hospital readmissions is due to a lack of continuity of care ,e.g. no discharge conversation, poor communication at discharge, lack of patient education and no patient empowerment, a lack of information flow between the hospital setting and primary care, … Especially vulnerable patients with e.g. low health literacy suffer from a not optimally organized transition from the hospital setting to home. More attention is needed for: patient and informal care giver engagement and education, person-centered support, coordination of the transmural care process in order to deliver continuous and responsible care.
 Target group: Vulnerable patients with kidney problems in the province of Flemish Brabant (Belgium).
 Involved and engaged stakeholders: Patients, informal care givers, hospital kidney department (doctors, nurses, physiotherapists, social workers, …), primary care professionals (GPs, nurses, physiotherapists, social workers, …).
 Intervention: A needs-assessment is performed regarding the continuity of care of vulnerable patients with kidney problems. Patients, informal care givers, primary care as well as hospital professionals are surveyed and interviewed.
 Results: Preliminary results show the need for optimized transmural care from the patient, informal caregiver and professional perspectives. Continuity of care is mainly lacking regarding its informational and therapeutic dimensions. The minimal or even absent information flow (informational continuity) results in therapeutic differences between the services offered by hospital and primary care professionals (therapeutic continuity). Special attention is needed for patient education and empowerment. Relational continuity between the patient and professionals is more fixed, but professionals often do not have fixed partnerships with each other, both within primary care as well as across the primary and hospital care settings.
 Lessons for international audience: 
 - A multi-perspective needs-assessment uncovers the, sometimes hidden, needs with regard to continuity of care.
 - Transmural care is often still quite discontinuous, especially from the perspective of the vulnerable patient, informal care giver and primary care professional.
 - System-wide change is needed in terms of vision, goals, adapting to local health needs, using people as partners, redefining professional responsibilities and (re)training care professionals, and reconfiguring care delivery.
 Next steps: The information gathered through the needs-assessment is used to co-develop a continuity-enhancing intervention that optimizes the transmural care process with relevant stakeholders (patients and informal care givers or their representatives, primary care professionals, hospital professionals). The intervention is implemented and evaluated through a patient and professionals questionnaire and interviews.

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