Table 4.

Summary of good practice points when offering stem cell transplantation to parents

Good practice points
Significant support needed to help with decision making
Include both partners in the counselling
Allow time for discussion and time to go away and think
Provide good written information to take away
Provide carefully considered links to descriptions of OI
Diagnosis in pregnancy - explore the option to terminate and take care with the timing of the SCT offer
Describe the commitment needed (e.g., number of appointments, length of follow-up)
Be clear with expectation setting and be honest that outcomes are uncertain
Supply details of previous research, including numbers previously treated and case studies
Clear explanation of possible short and long-term side effects and unanticipated adverse events
Clear explanation of procedural risks for baby and mother
Clearly state that the stem cells are fetal in origin
Discuss other options for treatment
Careful framing of SCT to avoid pressure to participate
Explore and mitigate possible pressures parents may place on themselves to participate
Put families in touch with someone independent
Be aware that families faced with a new and unexpected diagnosis of OI may need much more input from the OI specialist health professionals and patient support groups

SCT stem cell transplantation