The role of the specialist nurse in comprehensive care for bleeding disorders in Europe: An integrative review.

INTRODUCTION: Managing bleeding disorders (BDs) is complex, requiring a comprehensive approach coordinated by a multidisciplinary team (MDT). Haemophilia nurses (HNs) play a central role in the MDT, frequently coordinating care. As novel treatments bring change to the treatment landscape, ongoing education and development is key. However, understanding of the roles and tasks of HNs is lacking. AIM: The EAHAD Nurses Committee sought to identify and describe the roles and tasks of the European HN. METHODS: A five-step integrative review was undertaken, including problem identification, literature search, data evaluation, data synthesis and presentation. Relevant literature published from 2000 to 2022 was identified through database, hand and ancestry searching. Data were captured using extraction forms and thematically analysed. RESULTS: Seven hundred and seventy-seven articles were identified; 43 were included. Five main roles were identified, with varied and overlapping associated tasks: Educator, Coordinator, Supporter, Treater and Researcher. Tasks related to education, coordination and support were most frequently described. Patient education was often 'nurse-led', though education and coordination roles concerned both patients and health care practitioners (HCPs), within and beyond the MDT. The HN coordinates care and facilitates communication. Long-term patient care relationships place HNs in a unique position to provide support. Guidelines for HN core competencies have been developed in some countries, but autonomy and practice vary. CONCLUSION: As the treatment landscape changes, all five main HN roles will be impacted. Despite national variations, this review provides a baseline to anticipate educational needs to enable HNs to continue to fulfil their role.

The value-based healthcare approach to haemophilia: Development of outcome measures for the evaluation of care of people with haemophilia.

INTRODUCTION: Considering the advances in haemophilia management and treatment observed in the last decades, a new set of value-based outcome indicators is needed to assess the quality of care and the impact of these medical innovations. AIM: The Value-Based Healthcare in Haemophilia project aimed to define a set of clinical outcome indicators (COIs) and patient-reported outcome indicators (PROIs) to assess quality of care in haemophilia in high-income countries with a value-based approach to inform and guide the decision-making process. METHODS: A Value-based healthcare approach based on the available literature, current guidelines and the involvement of a multidisciplinary group of experts was applied to generate a set of indicators to assess the quality of care of haemophilia. RESULTS: A final list of three COIs and five PROIs was created and validated. The identified COIs focus on two domains: musculoskeletal health and function, and safety. The identified PROIs cover five domains: bleeding frequency, pain, mobility and physical activities, Health-Related Quality of Life and satisfaction. Finally, two composite outcomes, one based on COIs, and one based on PROIs, were proposed as synthetic outcome indicators of quality of care. CONCLUSION: The presented standard set of health outcome indicators provides the basis for harmonised longitudinal and cross-sectional monitoring and comparison. The implementation of this value-based approach would enable a more robust assessment of quality of care in haemophilia, within a framework of continuous treatment improvements with potential added value for patients. Moreover, proposed COIs and PROIs should be reviewed and updated routinely.

Quality of dying in hospital general wards: a cross-sectional study about the end-of-life care.

BACKGROUND: In the last decade, access to national palliative care programs have improved, however a large proportion of patients continued to die in hospital, particularly within internal medicine wards. OBJECTIVES: To describe treatments, symptoms and clinical management of adult patients at the end of their life and explore whether these differ according to expectation of death. METHODS: Single-centre cross-sectional study performed in the medical and surgical wards of a large tertiary-level university teaching hospital in the north of Italy. Data on nursing interventions and diagnostic procedure in proximity of death were collected after interviewing the nurse and the physician responsible for the patient. Relationship between nursing treatments delivered and patients' characteristics, quality of dying and nurses' expectation about death was summarized by means of multiple correspondence analysis (MCA). RESULTS: Few treatments were found statistically associated with expectation of death in the 187 patients included. In the last 48 h, routine (70.6%) and biomarkers (41.7%) blood tests were performed, at higher extent on patients whose death was not expected. Many symptoms classified as severe were reported when death was highly expected, except for agitation and respiratory fatigue which were reported when death was moderately expected. A high Norton score and absence of anti-bedsore mattress were associated with unexpected death and poor quality of dying, as summarized by MCA. Quality of dying was perceived as good by nurses when death was moderately and highly expected. Physicians rated more frequently than nurses the quality of dying as good or very good, respectively 78.6 and 57.8%, denoting a fair agreement between the two professionals (k = 0.24, P <  0.001). The palliative care consultant was requested for only two patients. CONCLUSION: Staff in medical and surgical wards still deal inadequately with the needs of dying people. Presence of hospital-based specialist palliative care could lead to improvements in the patients' quality of life.

Self-care is Renouncement, Routine, and Control: The Experience of Adults with Type 2 Diabetes Mellitus.

Type 2 Diabetes Mellitus can cause serious complications; it has a severe impact on the quality of life and high costs. One of the key strategies to manage diabetes is self-care, a complex multifactorial process influenced by personal, cultural, and systemic factors, that comprises self-care maintenance, self-care monitoring, and self-care management. Few patients perform adequate self-care. To deepen our understanding of patients' experiences of self-care maintenance, self-care monitoring, and self-care management, we conducted the first qualitative study on this topic. This study used Interpretive Phenomenological Analysis, informed by the Middle-range Theory of Self-care of Chronic Illness, to explore the experience and meaning of self-care maintenance, self-care monitoring, and self-care management in adults with T2DM (n = 10). Three themes were identified: self-care is renouncement, self-care is routine, and self-care is control. A cross-cutting moral pattern connects the three themes. Our findings corroborate the Middle-range Theory of Self-care of Chronic Illness in the field of diabetes self-care and could inform practitioners in understanding the experience of self-care as a complex phenomenon and in developing tailored interventions.