he importance of a Cystic Fibrosis nurse specialist within the multidisciplinary team for patients with Cystic Fibrosis
Introduction
Cystic fibrosis (CF) is defined as “a heterogeneous recessive genetic disorder with pathobiologic features that reflect mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene”1. CF is a multi-system disorder affecting the pancreas, lungs, liver and vas deferens which can lead to malabsorption, cirrhosis and infertility respectively2. The presence of multidisciplinary teams (MDT) has allowed the complexity of CF to be more accurately treated, thus improving quality of life and an increase in average life expectancy2. This highlights the significance of MDT and the positive impact they have on patients with CF.
This paper aims to explore the importance of the MDT with special focus on CF nurses and how they contribute to the care of patients.
Methods
Articles for this paper we sought using databases such as Primo, PUBMED, Google Scholar and British Medical Journal. Key terms such as ‘cystic fibrosis and MDT’, ‘cystic fibrosis and nurses’ and ‘cystic fibrosis role of nurses’ were used in order to generate appropriate results. In order to assess the reliability and validity of the articles, they were critically appraised to determine their suitability for this paper.
MDT roles involved with CF
A MDT is defined as “a group of healthcare professionals with different areas of expertise who unite to plan and carry out treatment of complex medical conditions”3. An ideal CF MDT comprises of consultants, nurse specialists, microbiologists, physiotherapists, dietitians, pharmacists, clinical psychologists, social workers and clinical geneticists4. Input from different healthcare professionals enables effective care for patients with CF.
The complexity of CF means it is essential to have a depth and wealth of knowledge plus a plethora of different skills in order to provide the best care for patients. The presence of a MDT allows professionals to share their area of expertise thus ensuring patient safety and optimal care.
CF patients must undergo annual reviews, and the role of the MDT is highly important during this5. Annual reviews involve input from all members of the MDT ensuring no aspect of a patients care is overlooked5. This ensures all aspects of a patient’s care is addressed.
During my time at a CF unit, I was able to see an excellent and well-structured MDT. However, the CF physiotherapist had recently left her post and as of yet there was not a replacement. For in-patients, the ward physiotherapist was being used. The lack of a designated CF physiotherapist highlighted problems that can arise in an MDT and the effect this can have on patient care. It can lead to a lack of continuity of care for patients thus affecting their perception of physiotherapy and its effectiveness.
CF specialist nurses
Nurses are registered to the Nursing and Midwifery Council and CF specialist nurses are also invited to join the Cystic Fibrosis Nursing Association (UK and Ireland)6, 7. The role of a CF nurse was first appointed in 1980, and their specific role varied depending upon which other members of the MDT were in post at that current time8.
The role of the nurse is diverse with lots of different aspects and components. Their role is to ensure patient’s physical, psychological and social needs are met, whilst always acting in the best interest of the patient and upholding their dignity9. Within a CF unit the specialist nurse also play a key role within co-ordination of the whole service5. (See figure 1).
Throughout my time at the CF unit, it was evident the nurse specialists were essential members of the MDT, and through working closely with colleagues allowing for the most effective patient care and safety.
CF nurses during clinic will often see patients first and measure patient’s lung function, weight, height, oxygen saturation and obtain a sputum sample for microbiology10. The nurse doing basic observations prior, allows for effective team working as this information can be passed onto the consultants. This allows for consultations to be more time-effective and potentially more effective which in turn provide increased patient satisfaction.
The contribution of a CF nurse to patients
Specialist CF nurses are often the first point of contact in UK hospital trusts for patients with CF5. This places CF nurses in the centre of care for patients and also in the MDT. CF nurses see patients and often feedback their findings to consultants and discuss management plans. CF nurses often have the most contact with patients and know their history in great depth. This is important as their abundance of knowledge can be passed onto other members of the MDT and this can help tailor and individualise patient’s management plans, ensuring optimum care.
Infection control is very important amongst CF patients as the rate of transmissibility is very high2. Due to this, isolation of CF patients in centres is encouraged and strict hygiene measures are implemented to reduce cross-infection. A UK CF centre I shadowed had stringent measures in order to reduce cross-infection amongst CF patients. The specialist nurses alongside admin staff ensured all patients were appropriately placed in rooms, which reduced their exposure to microorganisms, which could be detrimental to their health. In order to achieve this, it took a considerable amount of research into the microorganisms CF patients carried. This shows the complexity and diversity of the role of the CF nurse.
When possible, it is advised patients have IV antibiotic treatment in their own home. Nurse specialists are responsible for inserting midlines and teaching patients how to administer IV antibiotics. They provide education for patients on the importance of the aseptic technique, how to administer their antibiotics and the importance of them. Allowing patients to have home IV antibiotics, this allows a sense or normality for patients and prevents prolonged stays in hospitals. This can potentially increase patient recovery and satisfaction. As CF patients must be kept isolated from other CF patients, this reduces the chance of cross-contamination. Without the dedicated time and expertise of the CF nurse, IV antibiotics at home would potentially not be possible which could be detrimental to patients health.
Specialist CF nurses are available to enter the community. This allows accessibility of care for CF patients when they are unable to access the hospital. As the same members of the team also see patients, this allows continuity of care.
Administration of some treatment programs for patients with CF can take up to 4hours and compliance of respiratory medications can be around 61.8% for patients2,11. The role of the CF nurse is of paramount importance regarding this aspect and heavily involves educating patients. The specialist nurse teaches patients how to use their medication, for example, nebulisers. This ensures patients get maximum benefit from said medication due to having the correct technique and understanding of how the medication works and helps their symptoms. Further educational roles of CF nurses include educating patient’s families on their condition12. This is an incredibly important component as relatives having a good understanding can help ensure they are supporting the patient fully.
CF nurses can also help CF patients with fertility and genetic testing, should they become pregnant13. This provides an example of the complexity of CF nurses’ role and their diversity. CF nurses can help patients ‘full circle’ with regards to their own CF and helping them plan for future families. Sharing their expert knowledge can help CF patients determine what is best for them and their potential children.
A CF nurse specialist also ensures all members of the MDT are accessible to patients depending upon their need10. This is imperative as it ensures patient’s individual needs are addressed with minimal disruption and distress to them. A UK CF centre I recently shadowed, had a benefits officer, which was significantly important to patients. The complex nature of CF can mean it is difficult for patients to manage their condition at times. As many patients with CF have difficulty working, the help of the benefits officer can reduce stress for patients, and allow them to focus on their health.
CF nurses are expected to have a good understanding of the psychological issues surrounding CF10. Due to the difficulty associated with receiving a diagnosis of CF, The CF Trust UK acknowledges patients will often need additional psychological support14. As previously mentioned CF nurses are often the first of the MDT to see patients and therefore they are able to offer patients emotional support. However, they also have the means to direct patients to different members of the MDT, such as psychologists. CF nurses can also assist psychologists on the patient’s medical history, thus showing effective team working within the MDT.
The CF nurse specialist will also ensure there is effective communication of the patient’s health with who is necessary10. Such people involved will be the GP, the hospital, the patient’s work place and other members of the health care team. This is important as healthcare professionals being aware of the patient’s CF can affect their medical care and can ensure the patient is given the best treatment possible.
Case Study
I saw Patient X, a 48-year-old female who was diagnosed with CF at the age of 45 years.
Role of the CF nurse
It was evident the CF nurses were at the forefront of the care for Patient X.
I attended the CF clinic, and the first person to see Patient X was the nurse. The nurse and Patient X had a very good rapport and the nurse asked questions about she was feeling and began observations. The nurse took the patient’s blood pressure and spirometry. Patient X’s blood pressure was elevated and the nurse asked the patient whether she was feeling anxious about being in hospital. The nurse was very reassuring towards the patient, which appeared to put her at ease.
Patient X had a complex social history and it was evident this was affecting her. The nurse enquired about this, asking how she getting on. Patient X explained with her sister’s bipolar and the breakdown of her marriage meant she was struggling a little, but things were getting better. The nurse asking this immediately showed how proactive and involved she was in Patient X’s care. Whilst also caring for the Patient X’s physical health, she was also taking an interest in her emotional well-being. The nurse was very empathetic and reassuring and it was evident her asking this meant a great deal to Patient X.
I asked Patient X who she felt had made the biggest impact on her care. Without hesitation, she explained the nurses. Patient X further explained how they have been present through every step of her CF journey and have continually offered support and encouragement whilst addressing any concerns or worries she has had.
I spoke to Patient X about how she felt receiving a diagnosis of CF, especially as it is relatively late compared to most patients. Patient X was relieved as she finally had an explanation for her symptoms. However, the lifestyle changes accompanied with CF proved difficult and Patient X had poor compliance with her medication. It proved a challenge to incorporate into her busy lifestyle. However, she explained the nurses always encouraged her and explained the importance and benefits of taking her medication. Since Patient X has retired from work, she now complies with her medication regime. Patient X also reported excellent support from the team regarding the tough decision to retire and helped her reach a decision which was best for her.
Patient X also had home intravenous antibiotics. She explained the nurses were very encouraging towards her, and fully explained the procedure of how to do it. She explained without their thorough guidance she could have become overwhelmed with how to administer the antibiotics. Nebulisers were also recently added to Patient X’s medication regime. The CF nurse was available and spent time with Patient X discussing how to use it and ensuring her technique was correct.
Patient X spoke about how the CF nurses operate an ‘on-call service’ and she is encouraged to phone them should she have any problems at any time. She explained whilst she rarely uses this as she doesn’t want to disturb the nurses, she feels comforted and reassured the CF nurses are available should she need their help or advice. She mentioned this to the CF nurse who fully reassured her that she should call anytime without hesitation.
Conclusion
Through observation of a UK CF unit and extensive research, it is evident the presence of a MDT is of paramount importance for CF patients. The role of the CF nurse specialist is highly skilled and is at the forefront of caring for patients. Due to the extensive contact CF nurses have with patients, the depth and wealth of knowledge is significantly important and allows them to communicate this amongst the MDT.
I witnessed the CF nurse providing support and excellent patient care, which was evidently appreciated by patients, and thus improving patient satisfaction. The complexity and versatility of a CF nurses role enables them to adapt to different situations and provide excellent patient care. They are also work very closely with the rest of the MDT, which collectively enables effective treatment for patients with CF.