Helpful infographic developed
Chair of the UK HSP Support Group, Adam Lawrence, and Secretary of Euro HSP, Lori Renna Linton, both of whom have HSP, collaborated as members of the European Reference Network on Rare Neurological Diseases (ERN-RND) to chart the journey that people with HSP take.
A more detailed version of the chart here (need to Zoom to enlarge once open).
Patient Journeys are info-graphical overviews that visualize patients’ needs in the care of their rare disease. Because Patient Journeys are designed from the patient’s perspective, they allow clinicians to effectively address the needs of rare disease patients.
Patient Journeys consider that patients’ needs may differ at different stages of the disease – e.g., initial symptoms vs. treatment. They also reflect the patients’ personal experiences, which may vary depending on the person, clinic and country.
ERN-RND considers Patient Journeys working documents that patients and clinicians can use together to identify gaps in care and adapt care pathways to better meet the needs of patients living with these conditions. Patient Journeys can therefore be seen as a first step toward systematic patient engagement in the design of care pathways.
In addition, Patient Journeys are a useful resource for patients, families, non-specialist clinicians, and the general public to understand the care needs of patients living with a rare neurological disease.
The Patient Journey for Hereditary Spastic Paraplegias (HSPs) was developed together with Adam Lawrence, chair of the UK HSP Support Group and Lori Renna Linton, ERN-RND ePAG representative for: Ataxia/HSP.
SOURCE: European Reference Network
Patient Journey Hereditary Spastic Paraplegias (HSPs)
Adam Lawrence, Chair, UK HSP Support Group
Lori Renna Linton, ERN-RND ePAG representative for Ataxia/HSP