Contributions
Abstract: PB1828
Type: Publication Only
Background
Paroxysmal nocturnal hemoglobinuria (PNH) is an acquired disease characterized by chronic, complement mediated intravascular haemolysis. Nurses play a critical role in the holistic management of PNH. Due to the rarity of the disease, experience and knowledge in managing patients with PNH is lacking for many nurses, and there is currently no literature specific to the nurse care setting published to date.
Aims
To address different issues and aspects of PNH that commonly arise across the different stages of a patient’s life, and provide specialised guidance for nurses.
Methods
This is a collaboration of real-world experience and expert opinion by two world-leading PNH nurse specialists, and is supported by evidence based on current literature. Common issues are discussed in relation to different life stages; 1) teenagers and adolescents 12-20 years, 2) early adults 20-40 years, 3) middle age adults 40-60 years, 4) retirees >60 years, and 5) all life stages, with the intent to prompt and raise discussions that are relevant to each patient.
Results
The most commonly identified issues for each life stage discussed are 1) Behavioural and psychological issues, acceptance of their condition, and adherence to prophylactic antibiotics for teenage and adolescent patients. 2) Contraceptive methods, reproductive concerns, and pregnancy planning and management for early adults. 3) Alternative/holistic therapies and age related comorbidities for middle aged adults. 4) Home care services, cannulation and central device issues and when to stop eculizumab/start palliative care for the retiree age group. 5) Managing travel and preserving vein integrity for all age groups.
Conclusion
Nurses play a vital role in managing patients with PNH across their life course. By identifying potential issues and providing best practice guidance on matters that may arise during a patient’s life journey, nurses can be better educated and equipped to provide the best care for their patients.
Session topic: 12. Bone marrow failure syndromes incl. PNH - Clinical
Keyword(s): PNH, Quality of Life
Abstract: PB1828
Type: Publication Only
Background
Paroxysmal nocturnal hemoglobinuria (PNH) is an acquired disease characterized by chronic, complement mediated intravascular haemolysis. Nurses play a critical role in the holistic management of PNH. Due to the rarity of the disease, experience and knowledge in managing patients with PNH is lacking for many nurses, and there is currently no literature specific to the nurse care setting published to date.
Aims
To address different issues and aspects of PNH that commonly arise across the different stages of a patient’s life, and provide specialised guidance for nurses.
Methods
This is a collaboration of real-world experience and expert opinion by two world-leading PNH nurse specialists, and is supported by evidence based on current literature. Common issues are discussed in relation to different life stages; 1) teenagers and adolescents 12-20 years, 2) early adults 20-40 years, 3) middle age adults 40-60 years, 4) retirees >60 years, and 5) all life stages, with the intent to prompt and raise discussions that are relevant to each patient.
Results
The most commonly identified issues for each life stage discussed are 1) Behavioural and psychological issues, acceptance of their condition, and adherence to prophylactic antibiotics for teenage and adolescent patients. 2) Contraceptive methods, reproductive concerns, and pregnancy planning and management for early adults. 3) Alternative/holistic therapies and age related comorbidities for middle aged adults. 4) Home care services, cannulation and central device issues and when to stop eculizumab/start palliative care for the retiree age group. 5) Managing travel and preserving vein integrity for all age groups.
Conclusion
Nurses play a vital role in managing patients with PNH across their life course. By identifying potential issues and providing best practice guidance on matters that may arise during a patient’s life journey, nurses can be better educated and equipped to provide the best care for their patients.
Session topic: 12. Bone marrow failure syndromes incl. PNH - Clinical
Keyword(s): PNH, Quality of Life