Managing care pathways for patients with complex care needs

Sammanfattning: One of the central challenges for the healthcare system today is how to manage care for patients with complex needs. This patient group is not well-defined but covers patients with serious diseases and comorbidities, or with a limited ability to perform basic daily functions due to physical, mental or psychosocial challenges. This group has a high service and resource utilisation resulting in high costs for the healthcare system and, typically, poor health outcomes. To improve care for these patients, it is necessary to implement strategies to manage the differentiated care needs, the additional support needs, the uncertainty in care delivery, and the coordination needs of the involved providers and the patient.Care pathways are increasingly used internationally to make care more patient-centred and to structure and design care processes for individual patient groups. Important elements in care pathways include structuring care activities, by defining their content and sequence; coordinating between providers and professionals; and involving patients in their care process. In this thesis, care pathways are proposed as the overall strategy for managing care for patients with complex care needs.The purpose of this thesis is thus to contribute with knowledge on how care pathways can be managed for patients with complex care needs. This is achieved by analysing how the practices coordination, standardisation, customisation and personalisation can support management of care pathways and by discussing how these practices influence quality of care. The quality of care dimensions discussed are accessible, timely, equitable, and patient-centred care.The empirical context in this thesis is the Standardised Cancer Care Pathways (CCPs) which were implemented in Sweden from 2015 to 2018. CCPs is the umbrella term for the national initiative to shorten waiting times, decrease regional differences and reduce fragmentation in care processes. CCPs include elements such as diagnosis-specific pathways and guidelines, introduction of CPP coordinators, and mandatory reporting of waiting times. Focus has been on implementing care pathways for 31 cancer diagnoses in all Swedish healthcare regions.Both qualitative and quantitative research methods have been used. A case study was conducted to examine standardised and customised care pathways, and coordination and multidisciplinary work in care pathways. A document study of regional reports on CCPs was analysed to study effects of care pathways on accessibility, timeliness and equitability. Finally, a national survey was conducted to deepen the understanding of the role of coordination, as performed by coordinators, in care pathways.This thesis argues that standardised and customised care pathways should be combined to manage care for patients with complex care needs. The customised pathway in particular benefits patients with serious unspecific symptoms, unknown primary tumour or more complex care needs, while patients with care needs that can be treated independently of the main diagnosis benefit from following a standardised care pathway.Coordinators are an important means to manage coordination, customisation and personalisation in the care pathway. The coordinators’ role is twofold: the first role is to manage care pathways by customising the care pathway and coordinating involved providers; the second role is to support and guide patients through the care pathway. This can be achieved by adapting interpersonal communication with patients through personalisation.This thesis further argues that care pathways have most potential to positively influence accessibility, timeliness, equitability, and patient-centredness. Accessibility has been positively influenced, especially for patients with ambiguous symptoms where symptoms indicating cancer have improved their chances of accessing cancer diagnostics. A negative aspect of prioritising patients who follow CCPs has been the potentially longer waiting times for other patient groups in equal need of urgent care. Notwithstanding, prioritised access to care is perceived to positively influence timeliness for patients following CCPs. Care pathways are perceived to have positively influenced patient-centredness by shifting the focus from what to deliver to how to deliver it.