title: Traversing the network: a user-led Care Pathway approach to the management of Parkinson's disease in the community.
abstract: This article reports on a pilot study to develop and implement a Care Pathway framework for people with Parkinson's disease (PD) and their carers, to facilitate more comprehensive and integrated health and social care, with a streamlining of the transfer of core information around the system. The pathway is user-led, conceptualising the user/carer as the 'communications centre', resourced and supported in the management of their situation by the professionals to achieve their own integrated package of care. The Care Pathway tools, comprising of a local information pack, a Problems/Needs form, a Clinic Summary and a service record sheet, were designed by a working party consisting of service providers, a service user and carer and the researchers. The use of the framework was evaluated by following the progress of a convenience sample of 22 people with PD over a 12-month period. Beginning and end-point data on patient characteristics, social circumstances, severity of illness, and recent/current use of services were collected. The separate tools and the contribution of the framework to the management of the illness were evaluated through semi-structured interviews with participants and their carers and focused interviews with the participating neurologist and specialist nurse, conducted at the end of the 12-month period. Participants' situations showed very little change overall. The people with PD and their carers were generally enthusiastic about the Care Pathway, particularly the problems/needs form which they felt facilitated their active engagement in their own care. Very few service record forms had been used. The neurologist and specialist nurse were equally enthusiastic, and envisaged that full use of the framework with all service providers participating would greatly improve the overall care of their patients. In conclusion the Care Pathway framework is feasible within normal clinic procedures and improves patients' care. However, its effectiveness in contributing to the better management of the illness overall requires further testing.
authors.affiliation: Faculty of Health and Social Care, University of Hull, Hull HU6 7RX, UK. m.l.holloway@hull.ac.uk
authors.forename: Margaret
authors.initials: M
authors.lastname: Holloway
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000193:education; D003153:Community Health Services / Q000379:methods* / Q000458:organization & administration*; D003266:Continuity of Patient Care / Q000458:organization & administration; D005260:Female; D006266:Health Education / Q000379:methods / Q000458:organization & administration; D006801:Humans; D008297:Male; D008875:Middle Aged; D010300:Parkinson Disease / Q000628:therapy*; D010346:Patient Care Management / Q000379:methods* / Q000458:organization & administration*; D010347:Patient Care Planning / Q000458:organization & administration; D010865:Pilot Projects