Architecture of the HD Patient Pathway
Previous HD research has focused largely on clinical and education interventions. There is little research that examines the architecture of the HD care pathway. The design of the pathway will depend on how services are commissioned. In some areas of the UK services involve multidisciplinary teams and in others it is reliant on a specialist nurse who makes referrals into other services. Many HD patients are highly dependent on family members, who may also be at risk of inheriting the disease and/or have children/siblings who are at risk of HD.
Similar to the COPD case study, the fieldwork for the HD pathway included experience-based interviews with healthcare professionals, patient and relatives/carers. As a result, a high-level process map has been produced (see Fig. 8.1), which illustrates a generic pathway, where patients are supported by a community-based multidisciplinary team. We know that this provision is not universal across the UK, which may impact on the likelihood of being able to generalise to other forms of provision; however, we decided to focus our discussion here to demonstrate the benefits this model of care brings to patients and relatives and to offer insight to how this might be improved further.
After the initial stage of diagnosis, the progression of the disease and the type of interventions required will vary for each patient. Interventions are likely to focus on mental health, cognitive/emotional and motor symptoms. The process map, constructed from analysing the interview data, shows the patient trajectory according to how care is organised and the flow of information required to inform all relevant stakeholders.
The pathway focuses on a family-centred service where interventions are “customised” to the needs of the patient and often extends to relatives. This is not to say there is an unlimited offering of interventions, but these are initiated as and when required. In other words, there is not a prescribed list of standard interventions or activities such as you might see in other less complex care pathways (e.g. day case surgery) where the patient demand and condition is more predictable. A recent study evaluated an intervention designed to assist carers of HD patients in developing their knowledge base and methods for coping with the symptoms of HD. In addition to the reported increase in knowledge of, and confidence in their ability to care for HD sufferers, the carers identified three areas of the intervention to be beneficial. First they valued the practical advice received during the intervention and the information provided on coping strategies for carers. Second, there were the benefits of spending time with other carers, and the third were the benefits of being involved in the group discussions included in the intervention (Dale et al. 2014).
Fig. 8.1 High level of map of HD patient pathway. (Source: Author)