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Delivery of HIV care has evolved over the last 10 years, and nurse specialists are a driving force in developing new pathways to enhance patient care. Despite the continued rise in numbers of people living with HIV, the financial constraints on the NHS have unfortunately resulted in a reduction in service provision. Experienced nurses are integral to patient care management. They not only provide standardized care for stable patients, therefore increasing consultant capacity for the more complex medical patient, but have a degree of flexibility that allows newly diagnosed patients quick access to care and support. With a strong emphasis being placed on an integrated and collaborative multidisciplinary team approach, to ensure patients receive the same standard of care, Scotland's HIV centres follow an integrated care pathway. The nurse oversees the completion of this document and co‐ordinates the pathway of care depending on the clinical need. Nurses develop and maintain necessary partnerships between primary care, specialist care, psychological services, social care and third sector support services. The nurse case load continues to expand and diversify. Stable patients may be maintained on therapy but are living with a stigmatized long‐term chronic condition and rely on the nurse as a point of contact to access advice and support readily. The more chaotic and vulnerable clients with complex care needs require the nurse to co‐ordinate their care, ensuring the appropriate agencies remain involved. Overseeing the transition of care to other units and tracing patients who are lost to follow up is also a necessity, as retention in care is paramount for the continued improvement in clinical outcomes. The contribution that specialist nurses make to the provision of HIV care is valuable and will continue to play a large role in the delivery of such care.

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.

PurposeThis study seeks to challenge the notions of the standardized care pathway and patient‐centred care, both of which provide only a partial view of care as a complex system. In exploring and contrasting the care pathway protocol and an actual care pathway, the study aims to analyze the conceptualizations of care that actors involved in the actual care pathway have. The study makes suggestions on how to expand care pathways and thereby improve patient care.Design/methodology/approachA care pathway protocol is contrasted with the actual care pathway of a patient at a university hospital in Finland. Observational ethnography is combined with a narrative approach and activity‐theoretical ideas.FindingsThe study depicts the gap between the care pathway protocol and an actual care pathway. The actual care pathway, rather than being a clear‐cut process, is ruptured and unpredictable. The conceptualizations of care (i.e. care‐objects) held by the doctors, nurses and the patient were fragmented and clashed in their practical work activity. The main message to hospital management is that in order to expand care pathways, the multiple care‐objects need to be placed in constructive interplay.Research limitations/implicationsA single actual care pathway is presented and the results are interpreted accordingly.Originality/valueThe study explores the idea of a care pathway and patient‐centred care in the analysis of care‐objects. A new discursive model is introduced that places different care‐objects into interplay and opens up the possibilities for the expansion of care pathways.

There is a wide time gap between the publication of evidence and the application of new knowledge into routine clinical practice. The consequence is sub-optimal outcomes, particularly concerning for long-term relapsing/remitting conditions such as allergic diseases. In response, there has been a proliferation of published guidelines which systematically review evidence for the gold-standard management of most allergic disorders. However, this has not necessarily been followed by improved outcomes, partly due to a lack of coordination across the patient pathway. This has become known as the "second translational gap". A proposed solution is the development and implementation of integrated care pathways (ICPs) to optimize patient outcomes, with the notion that evidence-based medicine requires evidence-based implementation. ICP implementation is shown to improve short-term outcomes for acute conditions and routine surgery, including reduced length of hospital stay, improved documentation and improved patient safety. However, this improvement is not reflected in patient experience or patient-centered functional outcomes. The implementation of life-long, cost-effective interventions within comprehensive pathways requires a deep appreciation for complexity within allergy care. We promote an evidence-based methodology for the implementation of ICPs for allergic disorders in which all stakeholders in allergy care are positioned equally and encouraged to contribute, particularly patients and their caregivers. This evidence-based process commences with scoping the unmet needs, followed by stakeholder mapping. All stakeholders are invited to meetings to develop a common vision and mission through the generation of action/effect diagrams which helps build concordance across the agencies. Dividing the interventions into achievable steps and reviewing with plan/do/study/act cycles will gradually modify the pathway to achieve the best outcomes. While the management guidelines provide the core knowledge, the key component of implementation involves education, training, and support of all healthcare professionals (HCPs), patients and their caregivers. The pathways should define the level of competence required for each clinical task. It may be useful to leave the setting of care delivery or the specific HCP involved undefined to account for variable patterns of health service delivery as well as local socioeconomic, ethnic, environmental, and political imperatives. In all cases, where competence is exceeded, it is necessary to refer to the next stage in the pathway. The success and sustainability of ICPs would ideally be judged by patient experience, health outcomes, and health economics. We provide examples of successful programs, most notably from Finland, but recommend that further research is required in diverse settings to optimize outcomes worldwide.

Purpose The Swedish health-care system currently implements cancer care pathways (CCPs) for better and more timely cancer diagnostics. The purpose of this paper is to elucidate and define "crowding out" effects associated with the CCP implementation. Design/methodology/approach A document study based on implementation reports and action plans from Swedish county councils (n = 21) and a case study in one county council were conducted. Qualitative data collection and analysis were used to acquire more knowledge about the "crowding out" effects associated with the CCP implementation. Findings Three effects discussed under "crowding out" were defined. The first effect, called the push-out effect, occurs when other patients have to wait for care longer in favour of CCP patients. Another effect is the inclusion effect, whereby "crowding out" is reduced for vulnerable patients due to the standardised procedures and criteria in the referral process. The final effect is the exclusion effect, where patients in need of cancer diagnostics are, for some reason, not referred to CCP. These patients are either not diagnosed at all or diagnosed outside CCP by a non-standard process, with the risk of longer waiting times. Originality/value "Crowding out" effects are an urgent topic related to CCP implementation. While these effects have been reported in international research studies, no shared definition has been established to describe them. The present paper creates a common base to measure the "crowding out" effects and support further development of CCPs to avoid the negative effects on waiting times.

International audience ; The objective of Integrated Care Pathways for Airway Diseases (AIRWAYS-ICPs) is to launch a collaboration to develop multi-sectoral care pathways for chronic respiratory diseases in European countries and regions. AIRWAYS-ICPs has strategic relevance to the European Union Health Strategy and will add value to existing public health knowledge by: 1) proposing a common framework of care pathways for chronic respiratory diseases, which will facilitate comparability and trans-national initiatives; 2) informing cost-effective policy development, strengthening in particular those on smoking and environmental exposure; 3) aiding risk stratification in chronic disease patients, using a common strategy; 4) having a significant impact on the health of citizens in the short term (reduction of morbidity, improvement of education in children and of work in adults) and in the long-term (healthy ageing); 5) proposing a common simulation tool to assist physicians; and 6) ultimately reducing the healthcare burden (emergency visits, avoidable hospitalisations, disability and costs) while improving quality of life. In the longer term, the incidence of disease may be reduced by innovative prevention strategies. AIRWAYS-ICPs was initiated by Area 5 of the Action Plan B3 of the European Innovation Partnership on Active and Healthy Ageing. All stakeholders are involved (health and social care, patients, and policy makers).

International audience ; The objective of Integrated Care Pathways for Airway Diseases (AIRWAYS-ICPs) is to launch a collaboration to develop multi-sectoral care pathways for chronic respiratory diseases in European countries and regions. AIRWAYS-ICPs has strategic relevance to the European Union Health Strategy and will add value to existing public health knowledge by: 1) proposing a common framework of care pathways for chronic respiratory diseases, which will facilitate comparability and trans-national initiatives; 2) informing cost-effective policy development, strengthening in particular those on smoking and environmental exposure; 3) aiding risk stratification in chronic disease patients, using a common strategy; 4) having a significant impact on the health of citizens in the short term (reduction of morbidity, improvement of education in children and of work in adults) and in the long-term (healthy ageing); 5) proposing a common simulation tool to assist physicians; and 6) ultimately reducing the healthcare burden (emergency visits, avoidable hospitalisations, disability and costs) while improving quality of life. In the longer term, the incidence of disease may be reduced by innovative prevention strategies. AIRWAYS-ICPs was initiated by Area 5 of the Action Plan B3 of the European Innovation Partnership on Active and Healthy Ageing. All stakeholders are involved (health and social care, patients, and policy makers).

International audience ; The objective of Integrated Care Pathways for Airway Diseases (AIRWAYS-ICPs) is to launch a collaboration to develop multi-sectoral care pathways for chronic respiratory diseases in European countries and regions. AIRWAYS-ICPs has strategic relevance to the European Union Health Strategy and will add value to existing public health knowledge by: 1) proposing a common framework of care pathways for chronic respiratory diseases, which will facilitate comparability and trans-national initiatives; 2) informing cost-effective policy development, strengthening in particular those on smoking and environmental exposure; 3) aiding risk stratification in chronic disease patients, using a common strategy; 4) having a significant impact on the health of citizens in the short term (reduction of morbidity, improvement of education in children and of work in adults) and in the long-term (healthy ageing); 5) proposing a common simulation tool to assist physicians; and 6) ultimately reducing the healthcare burden (emergency visits, avoidable hospitalisations, disability and costs) while improving quality of life. In the longer term, the incidence of disease may be reduced by innovative prevention strategies. AIRWAYS-ICPs was initiated by Area 5 of the Action Plan B3 of the European Innovation Partnership on Active and Healthy Ageing. All stakeholders are involved (health and social care, patients, and policy makers).

International audience ; The objective of Integrated Care Pathways for Airway Diseases (AIRWAYS-ICPs) is to launch a collaboration to develop multi-sectoral care pathways for chronic respiratory diseases in European countries and regions. AIRWAYS-ICPs has strategic relevance to the European Union Health Strategy and will add value to existing public health knowledge by: 1) proposing a common framework of care pathways for chronic respiratory diseases, which will facilitate comparability and trans-national initiatives; 2) informing cost-effective policy development, strengthening in particular those on smoking and environmental exposure; 3) aiding risk stratification in chronic disease patients, using a common strategy; 4) having a significant impact on the health of citizens in the short term (reduction of morbidity, improvement of education in children and of work in adults) and in the long-term (healthy ageing); 5) proposing a common simulation tool to assist physicians; and 6) ultimately reducing the healthcare burden (emergency visits, avoidable hospitalisations, disability and costs) while improving quality of life. In the longer term, the incidence of disease may be reduced by innovative prevention strategies. AIRWAYS-ICPs was initiated by Area 5 of the Action Plan B3 of the European Innovation Partnership on Active and Healthy Ageing. All stakeholders are involved (health and social care, patients, and policy makers).

International audience ; The objective of Integrated Care Pathways for Airway Diseases (AIRWAYS-ICPs) is to launch a collaboration to develop multi-sectoral care pathways for chronic respiratory diseases in European countries and regions. AIRWAYS-ICPs has strategic relevance to the European Union Health Strategy and will add value to existing public health knowledge by: 1) proposing a common framework of care pathways for chronic respiratory diseases, which will facilitate comparability and trans-national initiatives; 2) informing cost-effective policy development, strengthening in particular those on smoking and environmental exposure; 3) aiding risk stratification in chronic disease patients, using a common strategy; 4) having a significant impact on the health of citizens in the short term (reduction of morbidity, improvement of education in children and of work in adults) and in the long-term (healthy ageing); 5) proposing a common simulation tool to assist physicians; and 6) ultimately reducing the healthcare burden (emergency visits, avoidable hospitalisations, disability and costs) while improving quality of life. In the longer term, the incidence of disease may be reduced by innovative prevention strategies. AIRWAYS-ICPs was initiated by Area 5 of the Action Plan B3 of the European Innovation Partnership on Active and Healthy Ageing. All stakeholders are involved (health and social care, patients, and policy makers).

International audience ; The objective of Integrated Care Pathways for Airway Diseases (AIRWAYS-ICPs) is to launch a collaboration to develop multi-sectoral care pathways for chronic respiratory diseases in European countries and regions. AIRWAYS-ICPs has strategic relevance to the European Union Health Strategy and will add value to existing public health knowledge by: 1) proposing a common framework of care pathways for chronic respiratory diseases, which will facilitate comparability and trans-national initiatives; 2) informing cost-effective policy development, strengthening in particular those on smoking and environmental exposure; 3) aiding risk stratification in chronic disease patients, using a common strategy; 4) having a significant impact on the health of citizens in the short term (reduction of morbidity, improvement of education in children and of work in adults) and in the long-term (healthy ageing); 5) proposing a common simulation tool to assist physicians; and 6) ultimately reducing the healthcare burden (emergency visits, avoidable hospitalisations, disability and costs) while improving quality of life. In the longer term, the incidence of disease may be reduced by innovative prevention strategies. AIRWAYS-ICPs was initiated by Area 5 of the Action Plan B3 of the European Innovation Partnership on Active and Healthy Ageing. All stakeholders are involved (health and social care, patients, and policy makers).

International audience ; The objective of Integrated Care Pathways for Airway Diseases (AIRWAYS-ICPs) is to launch a collaboration to develop multi-sectoral care pathways for chronic respiratory diseases in European countries and regions. AIRWAYS-ICPs has strategic relevance to the European Union Health Strategy and will add value to existing public health knowledge by: 1) proposing a common framework of care pathways for chronic respiratory diseases, which will facilitate comparability and trans-national initiatives; 2) informing cost-effective policy development, strengthening in particular those on smoking and environmental exposure; 3) aiding risk stratification in chronic disease patients, using a common strategy; 4) having a significant impact on the health of citizens in the short term (reduction of morbidity, improvement of education in children and of work in adults) and in the long-term (healthy ageing); 5) proposing a common simulation tool to assist physicians; and 6) ultimately reducing the healthcare burden (emergency visits, avoidable hospitalisations, disability and costs) while improving quality of life. In the longer term, the incidence of disease may be reduced by innovative prevention strategies. AIRWAYS-ICPs was initiated by Area 5 of the Action Plan B3 of the European Innovation Partnership on Active and Healthy Ageing. All stakeholders are involved (health and social care, patients, and policy makers).

International audience ; The objective of Integrated Care Pathways for Airway Diseases (AIRWAYS-ICPs) is to launch a collaboration to develop multi-sectoral care pathways for chronic respiratory diseases in European countries and regions. AIRWAYS-ICPs has strategic relevance to the European Union Health Strategy and will add value to existing public health knowledge by: 1) proposing a common framework of care pathways for chronic respiratory diseases, which will facilitate comparability and trans-national initiatives; 2) informing cost-effective policy development, strengthening in particular those on smoking and environmental exposure; 3) aiding risk stratification in chronic disease patients, using a common strategy; 4) having a significant impact on the health of citizens in the short term (reduction of morbidity, improvement of education in children and of work in adults) and in the long-term (healthy ageing); 5) proposing a common simulation tool to assist physicians; and 6) ultimately reducing the healthcare burden (emergency visits, avoidable hospitalisations, disability and costs) while improving quality of life. In the longer term, the incidence of disease may be reduced by innovative prevention strategies. AIRWAYS-ICPs was initiated by Area 5 of the Action Plan B3 of the European Innovation Partnership on Active and Healthy Ageing. All stakeholders are involved (health and social care, patients, and policy makers).