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Abstract Title | Virtual Patients with Rare Diseases: good for health professionals and good for patients

Authors

Sunhea Choi
Alexandra Webb
Sean J. Slaght

Theme

Virtual Patients and eCase Studies

INSTITUTION

University of Southampton, University Hospital Southampton NHS Foundation Trust

Background

Most Virtual Patients (VP) are aimed for health professionals. At the University of Southampton (UoS) Faculty of Medicine we developed a VP, which supports learning about rare diseases to health professionals and patients/relatives/friends/carers. Illustrating the emotional impact on the patients and those who treat and care for them, it presents core concepts of a rare disease. ‘Sam’, a patient newly diagnosed with Pompe’s disease (a rare disorder of glycogen storage), was approached for this VP development (http://www.youtube.com/watch?v=8dh3Junu4hQ).

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Conclusion

Whilst a small number of users have participated in the questionnaire to date, the initial results suggest that this type of VP facilitates learning and understanding of rare disorders in a meaningful and relevant way to a variety of users.

Take-home Messages

More VPs, which support learning of rare diseases for health professionals and patients/friends/relatives, are recommended.

Summary of Work

Developed based around interviews with Sam, illustrating her medical, emotional and on-going journey with Pompe’s disease, the VP (www.southampton.ac.uk/pompe/) integrates core concepts of Pompe’s disease. With an embedded questionnaire to investigate its usability, effectiveness and impact, it was made freely available via Internet in October 2011 and introduced to the University of Southampton undergraduate students as part of the curriculum.

Summary of Results

1420 visits to the VP, including ones by 133 UoS medical students, were recorded, and 37 users, from the mother of a child patient to a Consultant Neurologist, completed the questionnaire. They were from the UK (24), and USA, Canada, South Africa, Romania and Brazil (12). The feedback on the resource was positive from each group of users. Healthcare professionals appreciated the concise and informative nature of the resource. Patients/friends/relatives benefited from the contextualised information presented through Sam’s journey.

The questionnaire respondents consist of:

- 13 health professionals
- 12 medical students
- 10 patients
- 2 carer/friends/family

Change in perception towards the Pompe’s disease

- Yes: 14
- No: 5

Questions for health professionals (no of respondents: 13)

	yes	no
a. Has the Sam’s story illustrated in the videos helped you empathise with patients with rare diseases?	100% (13)	0% (0)
b. Have the videos helped you understand the symptoms associated to Pompe’s Disease?	100% (13)	0% (0)
c. Can you identify the symptoms of Pompe’s Disease if you see a patient with it?	100% (13)	0% (0)
d. Would you feel comfortable discussing the diagnosis of Pompe’s Disease with a patient or their relatives?	90.9% (10)	9.1% (1)
e. Do you have a greater understanding of the clinical process in patients with rare diseases?	83.3% (10)	16.7% (2)

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Acknowledgement

Special thanks to “Sam”, who shared her story to help health professionals and patients/family/cares/friends with Pompe’s disease to learn more about the Pompe’s disease and its impact on patients.

For more information, contact Sunhea Choi: s.choi@soton.ac.uk.

References

Background

Although rare diseases are common, learning about rare diseases can be challenging, textbook descriptions are often dry and uninspiring. Such difficulties are experienced by healthcare professionals and students. For patients and carers it is even more challenging. A deeper understanding of rare conditions comes through personal experience; which is difficult to obtain. Educational resources often concentrate on the symptomology and pathology of the conditions, neglecting the emotional impact on the patients and those who treat and care for them.

One such condition is Pompe’s disease, a very rare disorder of glycogen storage, the symptoms of which can come on slowly over a number of years or even decades and lead to muscle weakness and respiratory failure. The early symptoms of the disorder are non-specific and can be difficult to identify, however the correct diagnosis can lead to treatments, which improve quality of life.

We approached a newly diagnosed patient, ‘Sam’, with this condition to develop a learning resource for healthcare professionals, but which would also be appropriate for patients/friends/relatives.

Summary of Results

The Pompe’s Disease was distributed in a CD by the Australian Pompe’s Disease Association.

Usage

Since made available from 1^st September 2011 and to date, the Pompe’s disease case has been visited by:

- 238 times by 133 University of Southampton Faculty of Medicine students;

- 1138 times by external anonymous users;

- 44 times by 19 University of Southampton academic and research staff.

Usability

Ease of Use
Very difficult	0
Difficult	0
Average	2
Easy	2
Very easy	16

Learning benefits

Ease for learning
Very difficult	0
Difficult	0
Average	2
Easy	12
Very easy	6

Improvement in understanding of the disease
Not at all	1
Little	0
Some	1
Much	7
Very much	11

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INSTITUTION