Holistic Approach to Managing Patient care with Genetically Acquired Haemochromatosis

1
Holistic Approach to Managing Patient Care
with Genetically Acquired Haemochromatosis
Ireland Éire
Presented by
Jacinta Mc Aree-Murphy Health Promotion
Co-ordinator Cavan/Monaghan Hospitals North
Eastern Health Board Éire
2
Outline of Presentation

• What is haemochromatosis?

• Who does it affect?

• Why early identification is important?

3
Rationale

• To build healthy alliances with our
• clients so we can provide a better
• quality service.

• To empower local sufferers to affiliate
• to the National Haemochromatosis
• Society and self manage.

• To work in collaboration with St James Hospital
  on a research project on the level of incidence
  in the area.

4
What is Haemochtomotosis?

• It is a condition of iron overload due to
  abnormal regulation of iron absorption in the
  duodenum (gut).

• It is due to inheritance of a mutated gene (HFE
  gene) which stops the body from correctly
  regulating iron intake.

• Patients with HH continue to absorb iron from
  the diet despite excess stores.

• Excess iron is toxic and may cause irreversible
  damage to body tissues and organs in which it is
  stored.

5
Who does it effect?

• It is the most common genetic disorder in
  Caucasian (white) populations, concentrated in
  Celts and Nordic ancestry

• Prevalence 0.3 0.5 (1 in 200) in NW Europe
• 0.7 UK
• 1.0 2.1 (1 in 80) in Ireland

• Two mutations in the HFE gene found in HH
  patients are C282Y (90) and H63D (5).

• Carrier status (one copy of the mutation) is
  more common (1 in 10).

6
Why early identification is important?

• Early diagnosis represents a major chronic
  disease prevention strategy. (Reyes et al, 2003)

• If detected early it is easily treated.

• Prevention is better than cure.

7
Aim

• To create opportunities to heighten educational
  awareness of this disease and prevention
  opportunities for family members in the community

• To empower individuals to take responsibility
  for their own disease management and prevention
  strategies ably assisted by the day ward team.

8
Objectives
1. To deliver a quality patient centred nurse led
service based on individual need.
2. To empower the ward multi-disciplinary team to
educate themselves about the condition.
3. To develop a training package enabling nursing
personnel to cannulate and provide a total care
package within one year.
4. To build a healthy alliance with the
laboratory.
9
Objectives Contd
5. To promote and develop relationships with the
National Haemochromatosis Society and medical
experts working in the field, to advance the
knowledge and treatment of haemochromatosis.
6. To increase the public awareness of
haemochromatosis, how it manifests, the
destruction it can cause if untreated and how
easily it can be managed.
10
Methodology

• Staff in-service training to develop
  competencies in cannulation.

• Comprehensive literature review.

• Initial contact with Irish Haemochromatosis
  Society.

• Elicit the commitment of and the co-operation
  of, hospital management, medical, nursing, allied
  health professionals and voluntary agencies.

• Agree time-frame.

11
Methodology Contd

• An awareness evening was organised to meet the
  needs of the target population.

• Extensive advertisement via the print and radio
  media, in Drs surgerys and in parish bulletins.

• Information leaflets were designed in line with
  evidence based practice.

• Treatment card was designed to enable
  individuals become familiar with their care
  management.

12
Outcomes

• Patient
• Stream line service
• 1st National affiliated branch Haemochromatosis
  Society
• Invitation to participate in research St James
  Hospital Eire
• Equity in care delivery
• Patient empowerment
• Increase in patients knowledge of disease

• Nursing Practice
• Extended role for nurses
• Nurse led service
• Competencies in cannulation
• Protocols agreed implemented.

• Service
• Computer links with laboratory
• Fast track results
• Quality of service improved.
• Direct access to lab via shute system

13
Evaluation

• On-going evaluation of service.

• On-going review of staffing requirement levels.

• Compile final report and dissemninate to fellow
  hospital colleagues locally, nationally and
  globally.

• Contribute to future research in the area.

14
Acknowledgements

• Day ward staff, consultants and patients.

• Nursing and Admin Management

• Laboratory Personnel

• Dr.Norris Consultant Hepathologist St. James
  Hospital

• Annemarie Flanagan CNS Haemochromatosis Mater
  Hospital Dublin

• Liz Ellis CNS Haemochromatosis St. James
  Hospital Dublin

• National Irish Haemochromatosis Association -
  Margaret Mullett, Jim Fenton

15
Conclusion

• All of the objectives were met within the 1 year
  time frame.

• Process evaluation via focus groups indicate
  this is a worthy initiative.

Go raibh maith agaibh go léir