A Cystic Fibrosis (CF) nurse within the multidisciplinary team (MDT) for patients with CF
Introduction
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, LRTIs, cirrhosis and infertility respectively2. The presence of a MDT allows the complexity of CF to be more rigorously managed, thus improving quality of life and increasing average life expectancy of patients2. This highlights the significance of the MDT and the positive impact they have on CF patients.
This paper aims to explore the importance of the MDT with special focus on CF nurses and how they contribute to patient care.
Methods
Articles for this paper we sought using databases such as Primo, PUBMED and British Medical Journal. Key terms such as ‘cystic fibrosis MDT’ and ‘cystic fibrosis role of nurses’ were used in order to generate results.
The importance of MDT for CF patients
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. Due to the complexity of many patient’s medical conditions and presence of co-morbidities, a MDT is desirable and research has shown team-working effectively in a healthcare setting is correlated with positive outcomes on patient safety 4, 5. The presence of a MDT is also financially beneficial by reducing cost of hospital stays and the likelihood of recurrent hospital admissions5. For an effective MDT, it is proposed such traits are present: common purpose, measurable goals, effective leadership, effective communication, good cohesion and mutual respect6. However, effective team-working is not always possible and obstacles such as unsuccessful communication occur7.
The complexity of CF requires a wealth of knowledge from different areas of expertise plus a plethora of different skills in order to provide optimal care for patients; the presence of a MDT allows this. An ideal CF MDT comprises of consultants, nurse specialists, microbiologists, physiotherapists, dietitians, pharmacists, clinical psychologists, social workers and clinical geneticists8.
CF patients undergo annual reviews, and the role of the MDT is significant during this9. Annual reviews involve input from all members of the MDT ensuring no aspect of patients care is overlooked and all aspects are addressed9.
During my time at a CF unit, I witnessed an excellently structured MDT. However, the CF physiotherapist had recently left her post highlighting the impact this can have on patient care. It can lead to a lack of continuity of care, which can affect patient’s perception of physiotherapy and its effectiveness.
An additional improvement I contemplated for the CF unit was more members of the MDT being present during meetings. This would allow all members to be completely up to date with any changes within the unit and ensure the whole MDT is actively assessing patients being discussed, promoting consistent multidisciplinary input.
CF specialist nurses
Nurses are registered to the Nursing and Midwifery Council and CF nurses are invited to join the Cystic Fibrosis Nursing Association (UK and Ireland)10, 11. The role of a CF nurse was first appointed in 1980, and their role varied depending upon which other members of the MDT were in post at the current time12.
The role of the nurse is diverse with different aspects and components. Their role is to ensure patient’s physical, psychological and social needs are met, whilst acting in the best interest of the patient and upholding their dignity13. Within a CF unit the nurse plays a key role regarding co-ordination of the whole service9. (See figure 1). I witnessed important roles in the practical medical care, the utilisation of their detailed knowledge of patients, adaption to the needs of patients, education, emotional support, and communication of needs or changes to other members of the MDT.
Throughout my time at the CF unit, it was evident CF nurses were essential members of the MDT. Working closely with colleagues from different disciplines allowed for excellent patient care and safety.
The contribution of CF nurses to patient care and the MDT
CF nurses are the first point of contact in UK hospital trusts for patients with CF9. This places CF nurses in a central role for patients and the MDT. CF nurses often have the most contact with patients and know their history in-depth. This is important as their intricate patient knowledge can be passed onto members of the MDT, allowing personalistion of management plans, ensuring optimum care.
During clinic, CF nurses see patients first and measure lung function, weight, height, oxygen saturation and obtain a sputum sample for microbiology14. Completing these tasks prior to the patient seeing the doctor allows effective team working within the MDT. Consultations can consequently be more time-efficient and effective.
Infection control is 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 CF centre I shadowed had stringent measures in order to reduce cross-infection. CF nurses alongside administrative staff ensured patients were appropriately placed in rooms, reducing their exposure to microorganisms and thus cross-infection. This demonstrates the complexity and diversity of the CF nurse’s role and its significance for patient care.
It is advised CF patients have home IV antibiotic treatment. CF nurses are responsible for inserting midlines and teaching patients how to administer IV antibiotics12. They provide education for patients on the importance of aseptic technique and administration of antibiotics. Home IV antibiotics, provides a sense of normality and prevents stays in hospitals for patients12. This can increase patient recovery and satisfaction. Home IV antibiotics also promote isolation, therefore reducing cross-infection. Without the dedicated time and expertise of the CF nurse, IV antibiotics at home may not be possible for CF patients.
CF nurses are also involved in community care for patients when required14. This ensures the CF service is available if patients are unable to visit hospital. One of the additional roles include routine checks on patient’s response to treatment14. This provides evidence for CF nurses providing continuity of care, as they are present through all stages of patient’s care, regardless of the patient’s location.
Administration of treatment programs for patients with CF can take up to four hours and compliance of respiratory medications is around 61.8% for patients2,15. The role of the CF nurse is of paramount importance regarding this and involves extensive patient education12. CF nurses teach patients the correct technique of using medication, ensuring maximum benefit. CF nurses can also educate patient’s families on their condition16. This is important as maximising relatives understanding can help them empathise and support the patient. This can boost patient’s morale and lead to increased concordance with treatment.
CF nurses can also support CF patients with fertility and genetic testing, should they become pregnant or wish to become so17. CF nurses can help patients plan for future families highlighting the diversity of their role. With the CF nurse’s expert knowledge alongside additional support from the MDT, this can help patients decide what’s best for them.
A CF nurse ensures all members of the MDT are accessible to patients depending upon their need14. This is imperative as it guarantees patient’s needs are addressed with minimal disruption. A CF centre I shadowed had a benefits officer. The complexity of CF means it is difficult for patients to undertake employment at times. The benefits officer can reduce stress for patients from financial concerns, allowing focus on their health. This is an excellent example of the holistic approach of a MDT.
CF nurses are expected to have a good understanding of the psychological issues surrounding CF14. Receiving a diagnosis of CF can be difficult therefore, The CF Trust UK acknowledges patients may require additional psychological support18. As CF nurses are often the first of the MDT to see patients they are able to offer emotional support. However, they can also refer patients to different members of the MDT, such as psychologists if required. CF nurses can utilise their detailed knowledge of patients to assist psychologists by communicating pertinent elements of their history, thus demonstrating effective team working within the MDT and highlighting its importance in good patient care.
The CF nurse also ensures there is effective communication of the patient’s health with necessary parties14. People involved include the GP, members of the MDT and the patient’s employer. This is important as CF can affect patient’s treatment for other medical conditions, therefore healthcare professionals being aware ensures patients are given the best treatment without delay.
Whilst shadowing a CF unit, it was evident the CF nurse was central to patient care and within the MDT. The nurses would feedback and receive important information to the MDT, allowing effective team working and optimal patient care. Due to the nurses’ wealth of knowledge, the nurse was often the first port of call if the MDT required additional patient information.
Case Study
Patient X, a 48-year-old female diagnosed with CF aged 45 years.
The involvement of the CF nurse
During the CF clinic, the first person to see Patient X was the nurse. The nurse and Patient X had an excellent rapport. The nurse took the patient’s basic observations including spirometry. Patient X’s blood pressure was elevated and the nurse enquired as to whether she was feeling anxious. The nurse’s reassuring nature appeared to put the patient at ease.
Patient X had a complex social history. The nurse asked about this and Patient X explained with her sister’s bipolar and her own marriage breakdown things were difficult, but improving. The nurse asking this showed how involved she was in Patient X’s emotional care. The nurse was empathetic and comforting; it was clear Patient X appreciated this.
Without hesitation, Patient X explained the nurses had the biggest impact on her care. She explained they have been present through every step of her journey and have continually offered support and encouragement. Patient X received her diagnosis of CF relatively late and explained the relief she felt of finally having an explanation for her symptoms. However, the lifestyle changes accompanied proved difficult and Patient X had poor compliance with medication. She explained it was challenging to incorporate into her busy lifestyle. However, the nurses encouraged her and explained the importance of the medication. Since retiring from work, Patient X complies with her medication regime. Patient X also reported excellent support from the team regarding the tough decision of retiring and now receives advice from the benefits officer.
Patient X had home IV antibiotics. She explained the nurses were encouraging and explained the procedure. Without their thorough guidance Patient X believed she could have become easily overwhelmed. Nebulisers were also recently added to Patient X’s medication regime and the CF nurse spent time ensuring her technique was correct.
Patient X discussed the ‘on-call service’ CF nurses operate and feels comforted they are always available. Patient X is encouraged to phone them at any time however; she is often apprehensive to disturb them. The CF nurse reassured Patient X to call anytime, should she need to.
Conclusion
Through observation of a CF unit and research, it is evident the presence of a MDT is of paramount importance for CF patients. The role of the CF nurse is highly skilled and is at the forefront of caring for patients. Due to the extensive contact CF nurses have with patients, their depth and wealth of knowledge of their patients is significant, allowing them to communicate patients needs to the rest of the MDT.
I witnessed the CF nurse providing support and excellent patient care, which was evidently appreciated by patients, thus improving patient satisfaction. The versatility of a CF nurse’s role enables them to adapt to different situations whilst always keeping the patients safety and care their priority. They work very closely within the MDT, which collectively enables effective treatment for CF patients.