Allograft Information Exchange (ALLINEX): The Feasibility of Using the Internet for Two Way Information Exchange Between Patients & Tertiary Care - Development & Evaluation

Introduction

Many recipients of allogeneic haemopoietic stem cell transplant (HSCT) & families need ongoing clinical, psychological & rehabilitative information & support post-transplant.. Optimisation of internet resources may ensure easy access to relevant & accurate information. The aims of this three phase project were to (1) assess the psychosocial needs & (2) evaluate the impact of a specifically designed website (Allograft Information Exchange: ALLINEX) as an adjunct to standard care post-HSCT.   

Methods

The project was approved by the regional research ethics committee.

 Phase one: Assessment of post-transplant standard care (SC) was achieved by 1) cross-sectional patient interview study (Keding, et al. 2012 Psycho-Oncology 21:13-14) 2) service evaluation in 3 regional HSCT centres (84 participants in 8 professional groups).

Phase two:ALLINEX development & beta testing. Web-site content was designed by health & psychosocial care specialists in response to the outcomes of Phase I.  Local & national information resources were used to provide content. Beta testing in patients (23), HSCT staff (24) & family doctors (3) drove iterative development culminating in a final design for use in phase three..

 Phase three: A randomised pilot study recruited patients <2.5y post-HSCT with predicted minimum review of 2 clinic visits within 12 weeks of informed consent.  Stratified randomisation (with/without Graft versus Host Disease) allocated participants to SC or SC plus ALLINEX. Patient reported outcomes including HADS, SDI-21 & EORTC QLQ-C30 were collected at baseline & 12w post consent. Patients in the intervention arm completed questionnaires on Patient Acceptance & Use of Technology at 6w, ALLINEX feedback & system usability scale at 12w & had website activity tracked. All clinic visits were audio-recorded for simple content analysis & additional contacts logged.

 Results

Services evaluation identified gaps in service (e.g. limited psychological support), standard services (e.g. open access to transplant team) & reactive services (e.g.referrals to psychiatry). Consequently, ALLINEX included information in 5 domains ranging from “everyday living” to “end of life,” an interactive patient forum & a messaging system for contacting the HSCT team.  Beta testing resulted in minor amendments.

Phase three recruitment was completed September 2012 with a participation rate of 71% & 50/53 patients completing the study. Analysis is ongoing (due completion December 2012).

 Conclusions

Involvement of patients & staff at all stages of ALLINEX development has resulted in a website that performed well in preliminary testing. Initial analysis indicates that the site is relevant, accessible & comprehensive.  Final analysis may lead to changes in ALLINEX, guidance training for patients & staff & further development of the interactive aspects of the site.