Category: Neurodegenerative Disease (e.g. MS, Parkinson's disease); Technology (e.g. robotics, assistive technology, mHealth); Clinical Practice (assessment, diagnosis, treatment, knowledge translation/EBP, implementation science, program development)
Objective : To explore perceptions from people with intrathecal baclofen pump (IBP) on their satisfaction and decision making with IBP
Design : Cross –sectional population based study
Setting : Neuromodulation Program servicing northern central Saskatchewan
Participants (or Animals, Specimens, Cadavers) : All persons with IBP serviced by the Saskatoon Neuromodulation Program with multiple sclerosis scheduled for pump refills in 2018-19 were invited to participate (N=12).
Interventions : Not applicable
Main Outcome Measure(s) : For the main outcome concerning perspectives on IBP satisfaction and decision making, participants completed survey questionnaires. Frequencies were calculated for survey responses and thematic analysis conducted for the free text (DN, YW, KK). Chart reviews were carried out from consenting participants for baseline demographics and IBP dose.
Results : Nine people (75% of the eligible population) consented to participate (8 females). Mean age was 52 years (min 36, max 66), time since first IBP placement 6.6 years (min 2, max 22), dose at last follow up was 498mcg/day (min 111, max 926). Seven reported wishing to have obtained IBP sooner and 2 reported receiving it at the right time. Information from physiatrists and/or a peer with IBP informed decision making. We identified the themes “Misinformation” (i.e., IBP would not work if oral baclofen was not effective) and “Life is better but MS continues to worsen” in free-text responses. Six participants were very satisfied, 2 satisfied and 1 neutral about their IBP decision.
Conclusions : Users of IBP treatment with MS report satisfaction with treatment. Some report wishing they had their IBPs earlier. Future directions include exploring clinical decision making tools to minimize misinformation and facilitate timely decisions.
Yifan Wang– Physiatry Resident, University of Saskatchewan, Saskatoon, Saskatchewan
Darren Nickel– Clinical Research Coordinator, University of Saskatchewan, Saskatoon, Saskatchewan
Karen Waterhouse– Nurse, Saskatchewan Health Authority, Saskatoon, Saskatchewan
Aleksander Vitali– Neurosurgeon, Saskatchewan Health Authority, Saskatoon, Saskatchewan
Katherine Knox– Associate Profressor, University of Saskatchewan, Saskatoon, Saskatchewan
Lindsay Schreiner– Nurse, Saskatchewan Health Authority, Saskatoon, Saskatchewan