Contributions
Abstract: EP1669
Type: Poster Sessions
Abstract Category: Therapy - Risk management for disease modifying treatments
Background: The number of disease modifying treatments (DMTs) for people with relapsing multiple sclerosis (pwRMS) continues to increase. Involving pwRMS in disease management decisions to start, choose between, or switch DMTS, requires provision of evidence-based information about treatments' short and long-term benefits and risks.
Goal: To identify how risks and benefits of DMTs are communicated to pwRMS making decisions about the management of their MS.
Methods: Qualitative interviews (n=30) with pwRMS and focus groups (n = 17, neurologists, MS nurses, pwRMS). Data was analysed within and across sources using thematic framework analysis.
Results: Four meta-themes were identified. 1) Multiple decisions: Each choice is emotionally hard and nested in multiple decisions (lifestyle changes). First treatment choices are made when DMT and RMS understanding is limited. Switching DMT is characterised by concerns about progression, and less DMT availability. 2) Multiple uncertainties. Decisions are made in a clinical context defined by MS heterogeneity, fluctuating unpredictability, and DMTs which do not completely reduce attacks. 3) Multiple risks. Most DMTs are associated with long term risks. The probabilities and types of risks vary and are not always well quantified. Small risk of death is recalled by pwRMS as oversimplified and overemphasised whilst higher likelihood of co-morbidity (thyroid autoimmunity, hepatotoxicity) appears less likely to be emphasised in consultations. As disability evolves, DMTs previously considered "too risky" are often re-visited and then considered "worth the risk". 4) Multiple trade-offs. Major clinical change, such as loss of mobility, and/or significant life events (parenthood and employment), impact on trade-offs along the life course.
Conclusions: PwRMS trade off a complex set of interrelated DMT risks and benefits at multiple interrelated decision points. There is variation in how information is given and little guidance to support reasoned decision making. This project aims to improve the decision making process for pwRMS and health professionals.
Disclosure: AM has received funding from the UK MS Society, the Medical Research Council (UK) and the UK National Institute for Health Research.
GP has received consulting fees from Biogen, Novartis, Teva and honoraria from Merck Serono and Roche.
HF has received consultancy/speaker fees and support to attend educational meetings from Merck, Novartis, Teva and Genzyme
KS has been a PI of trials sponsored by Medday, Novartis, Roche and Teva and involved in trials sponsored by Biogen, Sanofi-Genzyme, BIAL, Cytokinetics, and Canbex and has received honoraria and meeting support from Biogen, Lipomed, Merck Serono, Novartis and Teva.
JC has received support from the Efficacy and Mechanism Evaluation Programme and Health Technology Assessment Programme (NIHR); UK Multiple Sclerosis Society and National Multiple Sclerosis Society. In the last three years, he has been a local principal investigator for trials in multiple sclerosis funded by: Receptos, Novartis and Biogen Idec, and has received an investigator grant from Novartis outside this work. He has taken part in Advisory Boards/consultancy for Roche, Merck, MedDay, Biogen and Celgene.
SP: Nothing to disclose
HB: Nothing to disclose
DM: Nothing to disclose
EW: Nothing to disclose
Abstract: EP1669
Type: Poster Sessions
Abstract Category: Therapy - Risk management for disease modifying treatments
Background: The number of disease modifying treatments (DMTs) for people with relapsing multiple sclerosis (pwRMS) continues to increase. Involving pwRMS in disease management decisions to start, choose between, or switch DMTS, requires provision of evidence-based information about treatments' short and long-term benefits and risks.
Goal: To identify how risks and benefits of DMTs are communicated to pwRMS making decisions about the management of their MS.
Methods: Qualitative interviews (n=30) with pwRMS and focus groups (n = 17, neurologists, MS nurses, pwRMS). Data was analysed within and across sources using thematic framework analysis.
Results: Four meta-themes were identified. 1) Multiple decisions: Each choice is emotionally hard and nested in multiple decisions (lifestyle changes). First treatment choices are made when DMT and RMS understanding is limited. Switching DMT is characterised by concerns about progression, and less DMT availability. 2) Multiple uncertainties. Decisions are made in a clinical context defined by MS heterogeneity, fluctuating unpredictability, and DMTs which do not completely reduce attacks. 3) Multiple risks. Most DMTs are associated with long term risks. The probabilities and types of risks vary and are not always well quantified. Small risk of death is recalled by pwRMS as oversimplified and overemphasised whilst higher likelihood of co-morbidity (thyroid autoimmunity, hepatotoxicity) appears less likely to be emphasised in consultations. As disability evolves, DMTs previously considered "too risky" are often re-visited and then considered "worth the risk". 4) Multiple trade-offs. Major clinical change, such as loss of mobility, and/or significant life events (parenthood and employment), impact on trade-offs along the life course.
Conclusions: PwRMS trade off a complex set of interrelated DMT risks and benefits at multiple interrelated decision points. There is variation in how information is given and little guidance to support reasoned decision making. This project aims to improve the decision making process for pwRMS and health professionals.
Disclosure: AM has received funding from the UK MS Society, the Medical Research Council (UK) and the UK National Institute for Health Research.
GP has received consulting fees from Biogen, Novartis, Teva and honoraria from Merck Serono and Roche.
HF has received consultancy/speaker fees and support to attend educational meetings from Merck, Novartis, Teva and Genzyme
KS has been a PI of trials sponsored by Medday, Novartis, Roche and Teva and involved in trials sponsored by Biogen, Sanofi-Genzyme, BIAL, Cytokinetics, and Canbex and has received honoraria and meeting support from Biogen, Lipomed, Merck Serono, Novartis and Teva.
JC has received support from the Efficacy and Mechanism Evaluation Programme and Health Technology Assessment Programme (NIHR); UK Multiple Sclerosis Society and National Multiple Sclerosis Society. In the last three years, he has been a local principal investigator for trials in multiple sclerosis funded by: Receptos, Novartis and Biogen Idec, and has received an investigator grant from Novartis outside this work. He has taken part in Advisory Boards/consultancy for Roche, Merck, MedDay, Biogen and Celgene.
SP: Nothing to disclose
HB: Nothing to disclose
DM: Nothing to disclose
EW: Nothing to disclose