title: Development and evaluation of a specifically designed website for haematopoietic stem cell transplant patients in Leeds.
abstract: The purpose of this project was to develop and evaluate a specifically designed website (ALLograft INformation EXchange - ALLINEX) for adult allogeneic haematopoietic stem cell transplant (allo-HSCT) patients in Leeds. Specifications included information on the transplant journey and supportive care services, discussion forum and patient-clinical team electronic messaging service. The method followed a participatory action research approach in a five-phase project involving stakeholders. Phase 1 involved information gathering; Phase 2 development of content; Phase 3 building of website and usability testing; Phase 4 preliminary evaluation; and Phase 5 clinical implementation. Results concluded that Phase 1 patients were unaware of all services and reported unmet needs; gaps in support services were identified from a service evaluation; Phase 2 content was collected from experts, collated and synthesised; Phase 3 patient and staff feedback was positive and constructive resulting in more than 50 changes; Phase 4 ALLINEX evaluation demonstrated acceptable usability with good layout, content and aesthetics reported; Phase 5, over 15 weeks, ALLINEX had 6630 page hits, 9 new forum topics posted and received 3 clinical messages. The clinical team embraced responsibility for reviewing and monitoring ALLINEX. Financial and indemnity cover was secured for 3 years. ALLINEX, adopted locally, is sustainable and has functionality to roll-out to other UK allo-HSCT centres.
authors.affiliation: Psychosocial Oncology and Clinical Practice Research Group, Leeds Institute of Cancer and Pathology (LICAP), University of Leeds, Leeds, UK.
authors.forename: B
authors.initials: B
authors.lastname: Horne
authors.affiliation: Leeds Institute of Cancer and Pathology, University of Leeds, Leeds, UK.
authors.forename: A
authors.initials: A
authors.lastname: Newsham
authors.affiliation: Psychosocial Oncology and Clinical Practice Research Group, Leeds Institute of Cancer and Pathology (LICAP), University of Leeds, Leeds, UK.
authors.forename: G
authors.initials: G
authors.lastname: Velikova
authors.affiliation: St James's University Hospital, Leeds Teaching Hospitals NHS Trust, Leeds, UK.
authors.forename: S
authors.initials: S
authors.lastname: Liebersbach
authors.affiliation: St James's University Hospital, Leeds Teaching Hospitals NHS Trust, Leeds, UK.
authors.forename: M
authors.initials: M
authors.lastname: Gilleece
authors.affiliation: Psychosocial Oncology and Clinical Practice Research Group, Leeds Institute of Cancer and Pathology (LICAP), University of Leeds, Leeds, UK.
authors.forename: P
authors.initials: P
authors.lastname: Wright
mesh_terms: D000328:Adult; D003153:Community Health Services / Q000706:statistics & numerical data; D003625:Data Collection; D003695:Delivery of Health Care; D004739:England; D005246:Feedback; D005260:Female; D018380:Hematopoietic Stem Cell Transplantation; D006801:Humans; D007255:Information Services; D020407:Internet; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000523:psychology; D000072638:Patient Portals; D017060:Patient Satisfaction; D016730:Program Development; D012944:Social Support; D014184:Transplantation, Homologous; D014584:User-Computer Interface; D055815:Young Adult
keywords: ALLINEX; haematopoietic stem cell transplant; information; support, patients; website