Individual care plans in chronic illness care: aims, use and outcomes

Abstract

Introduction: During the last decade, individual care plans (ICPs) have been introduced in healthcare in many countries. ICPs are used in different settings and for different purposes. In chronic illness care, ICPs are implemented to improve patient-centeredness, i.e. to ensure that decision-making about treatment and care and the actual delivery of care is based on patients' self-assessed needs and personal goals, and is tailored to their preferences and competencies. In addition, ICPs are implemented to support patients' self-management. In terms of the Chronic Care Model (Wagner et al., 1998), these two purposes refer to interventions in different components: delivery system design and self-management support. With this paper we aim to provide more insight in the use of ICPs in chronic illness (primary) care in the Netherlands and in other European countries: to what extent and for which purpose have they been implemented, for which target populations and which outcomes have been achieved?. Methods: Data were collected in three ways: 1. by a patient survey among a nationwide sample of 1602 patients with a (medically diagnosed) chronic disease registered in 82 general practices in the Netherlands, 2. by surveys among patients with COPD, diabetes type 2 or cardiovascular disease/high risk and their primary care providers participating in pretestposttest evaluation studies of several ICP-related interventions in the Netherlands, and 3. by a survey among country experts of 31 European countries and subsequent site visits to regional integrated care programs or practices targeting patients with multi-morbidity in several European countries as part of the ICARE4EU-project (www.icare4eu.org). Results: Overall, the use of ICPs in Dutch chronic illness primary care in 2011 was low (9%), with slightly higher percentages of ICP-use found among patients with diabetes or COPD (13%), both diseases for which disease management programs have been implemented in the Netherlands. A low implementation level was also reported in studies from Norway and the UK. More recently, Dutch care groups who facilitated training and support for primary care providers to start working with ICPs succeeded in increasing the use of ICPs in their disease management programs for COPD, diabetes and cardiovascular disease/high risk (up to 36% of the participating patients). Primary care physicians and nurses reported various reasons to decide whether or not to develop an ICP with a specific patient. Some reported to use an ICP with patients with very complex health conditions, whereas others used ICPs with patients whom they perceived to be better prepared for self-management. These different reasons suggest that primary care providers use ICPs for different purposes. Several evaluation studies show that patients with whom an ICP had been developed experienced better chronic illness care (as assessed by the PACIC-questionnaire) than patients without an ICP. However, improvements in self-management were usually not found. One study showed no difference in outcomes between diabetes patients with a low or high (pretest) activation level (PAM). In 24 of the 31 countries included in the ICARE4EU-survey, integrated care programs were found in which the use of ICPs was reported. In the POTKU-project, which aimed to improve patient-centeredness of chronic illness primary care in Middle Finland, patients with an ICP reported to receive better chronic illness care (PACIC-scores) than patients without an ICP. But also in this project the implementation of ICPs lagged behind expectations, which -like in the Dutch evaluation studies- was attributed to poor integration of the ICP with the health information system, lack of time and patient characteristics. Highlights: - The implementation of ICPs in chronic illness care in European countries is still low, which seems partly due to impeding factors in the organization of the care (e.g. health information systems, allocation of staff time). - Healthcare providers seem to use ICPs for different purposes, which is reflected in their selection of patients with whom they develop an ICP. - ICPs have the potential to improve patient-centeredness: patients with an ICP report to receive care that is more guided by their personal goals and preferences than patients without an ICP. - There is currently insufficient evidence that ICPs also improve chronically ill patients' selfmanagement. Conclusion: There is a gap between policy aspirations and clinical practice of the use of ICPs in chronic illness care in the Netherlands and in other European countries. Factors in the organization of primary care (e.g. time investment, supportive environments) need to be addressed to improve implementation. ICPs may improve patient-centeredness rather than patients' self-management in chronic illness care.