Co-ordinated care for people affected by rare diseases: the CONCORD mixed-methods study

Background A condition is defined as rare if it affects fewer than 1 in 2000 people the general population. Limited evidence suggests that care poorly co-ordinated for affected by conditions. Objectives To investigate and how of with conditions UK, would like to be co-ordinated. Design mixed-methods study comprising (1) a scoping review develop definition identify components ( n = 154 studies); (2) an exploratory qualitative interview understand impact lack 15 participants); (3) national survey among experiences co-ordination 1457 (4) discrete choice experiment preferences 996 (5) development taxonomy 79 (6) costs providing care. Setting Health services conditions, including gatekeeping social provision third-sector Participants Adult patients parents/carers children or adults health-care professionals (e.g. doctors, nurses allied health professionals) involved No limits were set on included where live UK. sampled from patient provider networks organisations. Results was developed. Care diseases found not well For example, only 12% 760 adult disease reported they had formal co-ordinator, 32% attended specialist centre 10% plan. Patients, all better co-ordinated, some differences those professionals. Our outlined six domains: ways organising care, teams, responsibilities, often appointments take place, access records mode communication. Limitations It possible capture every condition. sampling strategy may have been biased participants systematically different population The cost analysis limited. Conclusions There diseases. This can negative physical mental families, their financial well-being. Future work Further research beneficial feasible, clinically effective cost-effective models co-ordination, using developed this study. Study registration registered NIHR Clinical Research Network Portfolio reference number 41132, Registry registry6351 Integrated Application System 254400. Funding project funded National Institute (NIHR) Social Delivery programme will published full ; Vol. 10, No. 5. See Journals Library website further information.