HSG 2015 Evening Blog: One Touch Stockings, Social Workers, and Summer Camp
You’re probably wondering, what are one touch stockings and what do they have to do with social workers? Much less what do social workers have to do with summer camp?
The answer? Not much, but they were just three of the array of topics on the agenda today at HSG 2015. From telemedicine, youth outreach, social work, cognitive assessments, and clinical trials meetings, today was a busy day at HSG 2015. It’s this kind of variety of topics that makes the work of HSG and its participants important in the treatment and care of Huntington’s disease.
Julie Stout from Monash University discussed the Huntington’s disease Cognitive Assessment Battery (HD-CAB) today. The HD-CAB is a combination of cognitive assessments that have been developed as a potential standard of cognitive assessments for HD clinical trials. The goals for HD-CAB include sensitivity, reliability, and feasibility and tolerability. The HD-CAB beta study included 250 participants across 20 English-speaking sites. The beta study was run as though it was a clinical trial and had a focus on producing high quality cognitive assessment data. Some of the assessments in the battery include Symbol Digit Modalities, Emotion Recognition, Hopkins Verbal Learning, and yes, you guessed it, the One Touch Stockings of Cambridge assessment! To satisfy your curiosity, the One Touch Stockings of Cambridge assessment tests spatial planning and frontal lobe function, that helps reliably test executive function. In this assessment, subjects determine number of moves required to make the bottom display match the top display.
Later in the day, the Care and Education Working Group met to discuss the many issues about long term care, nursing care, and importance and value of social workers in clinical experiences for those living with HD. A subgroup within the Care and Education Working Group has been formed that has created a survey to assess the social work landscape. This survey will look at the number and availability of social workers, their funding sources, and the types of issues with which they assist HD patients. If you are an HD social worker, or if you know of an HD social worker, or are just interested in the survey, click here.
As the conversation showed, social workers play a critical role in the care of HD patients and their families. The complexity of care, and the coordination of a vast, sometimes sparse network of resources, demonstrates the value of having a social worker in the HD experience.
Before sessions concluded for the day, we got to hear about camp. The Huntington’s Disease Youth Organization (HDYO)) held its first ever HD Youth Camp this summer. Chandler Swope of HDYO presented during the Novel Outreach Methods session about how critical youth education and youth involvement are in the HD experience. HD-affected youth face a set of challenges that as we think about living with HD. These are the future generations of HD, and there are many opportunities for outreach to HD-affected youth.
-Jared Husketh, contributor and director of clinical services for HD Reach