Creating a Care Pathway for Huntington's Disease (HD).
Saw Thurein Ko Tun (2007)
Brighton and Sussex Medical School
Method
Quality of care and current management techniques employed for HD patients was assessed based on current literature available, evidence based medicine established from clinical trials and a patient based survey. This survey was conducted on 10 residents with HD at Rapkyns Care Home using questionnaires based on quality of life, satisfaction with service and knowledge of HD. Separate questionnaires were given to family and staff in contact with the residents to gain a deeper understanding of the complexities of managing HD. Knowledge from surveys were combined with information gathered from the HD Association, Sue Ryder Care and visiting the specialist HD centre at the National Hospital of Neurology in London. The results show that the interviewees rated their quality of life between 'neither poor nor good' and 'good'.
Conclusion
The social aspect and stigma surrounding HD is a large issue that needs to be addressed in managing the condition. Using questionnaires more suitable for the lay person to understand and expanding the number of HD patients in the study would provide more insight and scope into creating the ideal pathway.
