Allogeneic Haemopoietic Stem Cell Transplant (HSCT) carries significant and persistent psychosocial burden. Use of supportive care services is limited.  A website (Allograft Information Exchange ALLINEX) was developed with the aim to improve information exchange, service access and encourage self-management.

Aims

To assess the acceptability and feasibility of introducing ALLINEX as an adjunct to post HSCT standard care (SC) by investigating:

• patient acceptance and use;
•  impact on
  • patient behaviour
  • process of care
• patient opinion concerning content, layout and function;

and estimating effect size of this intervention on patient well-being for future studies.

Methods

The study is a randomised pilot study involving HSCT patients post transplant who are likely to return to clinic on two occasions within twelve weeks following consent. The study employs stratified randomisation (with/without Graft versus Host Disease) to allocate consenting patients to ALLINEX plus SC or SC.  Recommendations for estimating effect sizes for larger trials were followed resulting in a sample size of n=40 required to complete the study. Patient reported outcomes including HADS, SDI-21, EORTC QLQ-C30 and high dose module are collected at baseline and twelve weeks post consent. Patients in the intervention arm complete questionnaires on Patient Acceptance and Use of Technology at six weeks and ALLINEX feedback and system usability scale at twelve weeks, and have their website activity tracked. All clinician-patients consultations are audio-recorded and subjected to simple content analysis. Patient contacts with the clinical team between hospital visits are collated.

Results

To date 42/58 (72%) patients have consented and 2 have completed the study (median age 52 years: range 20-66).  One participant has died. Process of care and other outcomes will be reported in full.

Conclusions

The study is due to close by August 2012. Results will inform the next stage of the project.