Practical needs and considerations for refugees and other forcibly displaced persons with neurological disorders: Recommendations using a modified Delphi approach

The Delphi method

The Delphi method has been demonstrated to serve as an effective process for arriving at a consensus among a panel of experts in multiple disciplines^20–22. Through an iterative process, experts are requested to complete surveys individually and then participate in group discussions to provide feedback on the results of the survey, which has been shown to enable a group to reach a consensus swiftly²⁰.

An outline of the rounds of the modified Delphi method executed for this study is provided in Figure 1.

Figure 1. Delphi method flowchart.

Study objective and protocols

The project included two full rounds of surveying and discussion in accordance with the Delphi method, with a final round survey that determined the working group-endorsed lists of contextual considerations (Table 1) and concrete neurological needs of displaced people globally (Table 2). The study was deemed exempt from formal review by the Mass General Brigham Institutional Review Board.

Member selection

In early February 2020, a list of 30 experts, primarily neurologists but also including non-neurologist physicians, was formed through an internet search through medical journal databases and professional websites. Expertise was determined by the individual’s knowledge of the unique neurological needs of forcibly displaced people as demonstrated by research publications and self-reported clinical exposure to displaced populations and was not limited to neurologists. The population considered forcibly displaced for this study included people displaced due to persecution or conflict and excluded people displaced due to economic or climate reasons. This list was further narrowed to 16 experts based on their geographic location, which were invited to join the study. A Global Working Group of nine experts representing the Republic of Albania, the Republic of Chad, the Islamic Republic of Iran, the Hashemite Kingdom of Jordan, Malaysia, Mexico, the Islamic Republic of Pakistan, the Republic of the Sudan and the United States of America was formed (Table 3). Reasons for nonparticipation of members of the initial 30 experts included insufficient exposure to displaced populations and an inability to participate regularly in the Delphi method process. The process did not specifically address the effects of Covid-19 but was carried out during the pandemic. Of the selected Global Working Group participants, six experts treat asylum seekers, nine treat refugees, and five treat internally displaced persons (Table 3).

Round one of the Delphi method

In mid-March, the round one survey was distributed to the Global Working Group. The survey requested each expert to provide their background information in addition to listing their experiences with displaced people. The main survey questions asked the experts to rank the top ten neurological interventions to address the neurological needs of displaced people, ignoring costs; to rank a list of demographic factors of displaced people that make the largest difference in providing neurological care; and to list other considerations that are important when assessing the needs of displaced people. The experts were informed that “concrete” refers to material interventions such as medical supplies (e.g.: phenobarbital, thiamine, head CT). Once all Global Working Group participants completed the round one survey, the results were circulated to the group. A total of 41 concrete neurological needs were listed and 20 important issues that were ancillary to the actual provision of a treatment were listed by the Global Working Group participants. In early April, the round one discussion was convened via a face-to-face Zoom call to review the results of the survey, provide rationale for interventions listed, and provide suggestions to incorporate into the next round of the Delphi method.

Round two of the Delphi method

Based on the results from round one, 14 larger categories of neurological interventions were developed, under which 33 specific items were listed after feedback. The experts were then asked to select and prioritize a list of ten interventions from the total list of interventions established from the previous round. The experts were also asked to rank the interventions from 1–4 based on the degree of necessity (1- absolutely necessary to 4- nice to have). In late May, the round two discussion took place via a face-to-face Zoom call with seven of the experts to provide feedback on the results of the round two survey. A comprehensive list of specific items was established within each category, and the experts agreed to rate specific items instead of categories for the final survey.

Round three of the Delphi method

In early June, the round three and final survey was circulated among the experts. It requested that each expert rate 41 specific items on a scale of 0–100 independently, with 0 being not necessary and 100 being absolutely necessary for the treatment of displaced people. The ratings for these 41 interventions were then averaged from across the working group and ranked from highest mean rating to lowest. For select categories (anti-seizure, anti-headache/pain, neuro-psychiatric and cardiovascular/neurovascular), each expert was asked to select the top priority medication when treating displaced people. The number 1 priority and number 2 priority items for each of these categories was documented based on the percent of working group members that reached consensus on a given intervention.

Cost assessment

A cost assessment was conducted for the top ten interventions, using a basic economic cost estimation model. The estimation for these interventions is provided in Table 4. These cost estimations used the most affordable price points available in the pharmaceutical market through online searches of goodrx.com in June 2020. The assessed price points were individual pricings and do not take into account large-scale price negotiations that an international organization could leverage. An illustrative dosage for each medication was selected based on prescribing patterns that are common for treating neurological conditions in adults. Treatment of a medicine for a chronic condition was estimated at one year. This assessment projected the population of displaced people needing care based on estimations made by a variety of sources such as the Center for Disease Control (CDC) and the World Health Organization (WHO). For imaging interventions, the percentage of displaced people requiring care was projected using the average MRI and CT scan usage estimates of >20 European countries from Eurostat. These data were used since many other countries do not have data collected or readily available on these interventions.

Ranking of supplemental considerations important for neurological care

Throughout the iterations of surveying and discussions, the Global Working Group determined important contextual considerations ancillary to the provision of neurological care for displaced people that were not concrete neurological interventions. During the round one discussion, consensus was reached that the economic status of the displaced person’s host country made the largest difference on the approach to providing neurological care to displaced people, followed by the stage of the displaced person in the asylum process and the economic status of the displaced person’s country of origin. A list of contextual considerations when providing neurological care to displaced people, ranked based on percent consensus that the intervention is a top consideration, is provided in Table 1.

Top neurological interventions for displaced people

A comprehensive, ranked list of 41 concrete neurological interventions for displaced people determined through the Delphi method is provided in Table 2. The top ten concrete neurological interventions to treat displaced people are provided in Table 4. They include two imaging interventions (CT scans and MRI scans) and three anti-seizure medications (levetiracetam, carbamazepine and sodium valproate).

For select categories of neurological interventions, the Global Working Group was asked to select the one medication they would use to treat displaced people. Table 5 provides the results of this prioritization, which was determined for anti-seizure, anti-headache/pain, neuropsychiatric, and cardiovascular/neurovascular treatments, along with cost estimations.

Assessing the costs of the intervention

As calculated in June 2020, the annual cost of providing the most important neurological interventions for the entire displaced population would be 220 million USD for medications and 4.2 billion USD for imaging and tests. The cost estimations for each of the most important neurological interventions are provided in Table 4 along with an estimated percent of displaced people in need of each intervention. This paper assumes a monotherapy anti-seizure treatment. As such, an average of the annual cost estimations of the three anti-seizure medications in the top 10 list (levetiracetam, carbamazepine and sodium valproate) was used when calculating the total annual cost for medications.

Study design: strengths and limitations

There are several strengths to this study. There has not been an expert-proposed set of recommendations of top neurological interventions for displaced people to date. These results create a foundation for future research and engagement for neurological care for displaced people. The Delphi method enabled the Global Working Group members to respond not only from their personal expertise in treating the neurological needs of displaced people but also from the insights from other members, improving the collective decision-making process. The geographic breadth of the Global Working Group members’ countries of residence, coupled with the diverse nationalities and official statuses of the displaced people they treat, makes the scope of the results more broadly applicable across a wider array of contexts. By synthesizing the experiences of a representative sample of neurologists and other providers treating displaced people globally and providing an estimation for how much these interventions may cost, these results facilitate the action of international organizations and funders seeking to improve the condition of displaced people. The findings thus help fill a critical gap in the understanding of neurological needs of displaced people with a pragmatic and expert-sponsored set of concrete recommendations.

There are also several limitations to our approach. While the study incorporated the expertise of eight neurologists and one public health expert who have direct experience treating and assessing the neurological conditions of displaced people, inclusion of experts from more countries and other healthcare professions (such as nursing or emergency relief staff) could have added a greater variety of perspectives. Though the study devised a prioritized list for treating the neurological needs of displaced people generally, the various sub-populations (i.e., internally displaced people, asylum seekers, and refugees) may have distinct needs that merit individualized attention. We chose to inquire the most appropriate interventions agnostic to cost; other approaches could have included cost as an important, pragmatic consideration. However, ignoring cost in selection of priorities allows the list to remain relevant as costs change for medications and technologies over time. Similarly, we could have instead asked about common symptoms rather than neurological diseases in general. Given that many medications and interventions are overlapping across diseases, the current approach was selected.

The estimated costs for implementing top neurological interventions have many limitations, since there is a great degree of variation in the pricing of items based on the vendors within a certain country context and the availability of pricing data. Several of the interventions also have multiple dosages, which were not specified during the rounds of the Delphi method. This study also only considers the cost of a single MRI or CT scan and does not factor in the costs of establishing the infrastructure and maintenance required for such imaging. Finally, we focused the task on “concrete interventions” rather than for example, the cost of training a new neurologist or another health care worker for the humanitarian setting. Human resources are of high value but were considered outside of the scope of the present consensus recommendations.