An online tool developed to facilitate efficient patient-provider decisions on disease modifying drugs for multiple sclerosis (MS) ran into several challenges and warrants further study.
Researchers in the Netherlands developed a prototype of an online patient decision aid tool for individuals with multiple sclerosis (MS) to assist in decision-making about treatment with disease-modifying drugs (DMDs). The tool, based on the principles of multicriteria decision analysis (MCDA), was developed following recommendations of the International Patient Decision Aid Standards (IPDAS).
Although some issues identified in the prototype were resolved, additional issues remained, according to study findings published in BMC Medical Informatics and Decision Making. Overall, “further development is needed to overcome these issues before beta pilot testing with patients and health care professionals at the point of clinical decision-making can take place to ultimately enable making conclusions about the value of the MCDA-based patient decision aid for MS patients, health care professionals, and the quality of care,” the researchers wrote.
Because decision-making about treatment with DMDs for MS is preference sensitive—in that it requires a trade-off between treatment benefits and burden—shared decision-making between patients and health care professionals ought to take place, the authors explained. In particular, patients with relapsing-remitting MS (RRMS) and those with diagnosed clinically isolated syndrome (CIS) often have to decide whether to begin treatment with DMDs, which can delay or prevent an accumulation of disabilities wrought by the disease.
“The large number of treatment options and the uncertainties associated with the options in terms of effects complicate the decision-making for health care professionals,” the authors said, while for those with MS, “the decision to start with a DMD can be even more difficult due to the cognitive and mental symptoms many patients experience.”
The researchers’ patient decision aid encompassed the principles of a user-centered design and consisted of 6 stages: scope of the patient decision aid, assessment of decisional needs, format, review and synthesis of evidence, development of prototype, and alpha pilot testing.
The aid included all brand name and generic DMDs available for patients with RRMS and CIS in the Netherlands (n = 12) and an option for no drug treatment. A total of 19 patients with RRMS identified important characteristics of DMDs with regard to decision-making on treatment via focus groups. Of the 34 attributes identified, 27 were included in a best-worst scaling survey administered to 185 patients, 27 neurologists and 33 MS nurses.
Throughout the course of the study, issues and challenges were identified with content and framing, weighting methods for the importance of characteristics according to the patient, and presentation of the result of the patient decision aid. In all rounds of the pilot testing, minor issues were raised regarding the aid’s format, scope, and functionality. Although adaptations were made accordingly, room for improvement remains, the researchers wrote.
“Whether the MCDA-approach actually reduces overall cognitive burden should be further studied, preferably by comparing decision-making with the MCDA-based patient decision aid to decision-making without the decision aid or with the decision aids without decision analysis,” they noted.
Furthermore, application of the MCDA approach means the aid may not fulfill all criteria for patient decision aids mandated by the IPDAS, while translation of the outcome estimates into performance scores between 0 and 1 resulted in challenges.
“Comparability of the DMDs for a specific characteristic is difficult when clinical data is lacking or has not been completely reported, such as the data for magnetic resonance imaging outcomes,” authors said.
Validations of performance scores with a larger group of clinical experts is warranted to increase scores’ objectivity, and inclusion of additional data from phase 4 studies may enhance the overall picture of all treatment options.
Investigators recommend the following measures for future implementation and research of decision aids:
“Whether adaptations in the delivery of the patient decision aid overcomes these issues should be further studied,” the researchers concluded. “Further development is needed, including beta pilot testing to evaluate the feasibility of implementation in clinical practice, to enable conclusions about the value of the MCDA-based patient decision aid for RRMS patients, health care professionals and the quality of care.”
Kremer IEH, Jongen PJ, Evers SMAA, Hoogervorst ELJ, Verhagen WIM, Hiligsmann M. Patient decision aid based on multi-criteria decision analysis for disease-modifying drugs for multiple sclerosis: prototype development. BMC Med Infrom Decis Mak. Published online April 9, 2021. doi:10.1186/s12911-021-01479-w