Purpose. To identify the preliminary comprehensive and brief core sets for Guillain Barre syndrome (GBS), in a Delphi process using the International Classification of Functioning, Disability and Health (ICF). Method. Focus groups and a consensus process were used to identify ICF core sets for GBS. This included: preliminary ICF studies; empirical patient data collection for 77 GBS participants; review of the evidence base and treatment in GBS literature followed by a Delphi exercise with 23 physicians and allied health professionals in Melbourne, Australia. Results. The expert consensus selected 99 second level ICF categories (in three rounds) which identify health domains relevant to GBS for multidisciplinary assessment. These domains were consistent with current practice and existing GBS literature. The comprehensive core set includes: 27 (23%) categories from the component 'body function', 7 (12%) categories from 'body structures', 43 (36%) from 'activities and participation' and 22 (29%) from the component 'environmental' factors. The brief set comprised 20 categories, 20% of categories in the comprehensive core set. Conclusion. The core set categories for GBS-related health need to be addressed in multidisciplinary care programs. Future clinical 'rating' of this set may facilitate scale development using the ICF in GBS. Further research is needed to confirm the generalisability of this set in clinical settings.
AimTo identify the preliminary comprehensive and brief core sets for Guillain Barre syndrome (GBS).
ContributorsKhan, F. Pallant, J. F.
Disease Category: Neurology
Disease Name: Guillain-Barre syndrome , Peripheral neuropathy
Age Range: 18 - 100
Sex: Either
Nature of Intervention: Not specified
- Clinical experts
- ICF core set
- Delphi process
- Focus group(s)
- Literature review
- Use of the International Classification of Functioning, Disability and Health (ICF)
This involved a formal decision-making and consensus process integrating evidence gathered from preliminary studies and expert opinion. This included preliminary published studies using the ICF; empirical patient data collection for 77 GBS participants; review of the current evidence base and treatment in GBS literature and a Delphi exercise with physicians and allied health professionals.
The patient and researchers’ perspective was presented by examining outcomes after empirical data collection for 77 GBS survivors; and a review of recent published papers (randomised and clinical trials) for GBS within the last decade. All studies identified were listed in formatted tables and presented to the Delphi participants in oral presentations. Further, the limitations of these studies were also presented to enable participants to make informed decisions about the current evidence base for treatment in GBS.
Twenty-three clinicians working in specialised tertiary neurological rehabilitation units across Melbourne were trained in ICF and invited to participate. They were nominated by their peers as experts in managing disability in patients with complex neurological conditions, including GBS. They were all provided with the same information so as to integrate their own experience of treating GBS and form the basis of a sound consensus. Participants were provided with the preliminary studies and results to help them consider what should be included in the ICF core set for GBS. They received information of the outcomes of empirical patient data collection, as well as individual preliminary studies (oral presentations) and detailed lists of ICF categories identified in the ICF manual.
The relevant ICF categories were identified in a formal consensus process similar to other reports. Summary lists comprised of the three approaches (empirical patient data, clinical trials and reviews and Delphi). The Delphi domain showed frequency of endorsement of category by expert participants. Oral presentations listed the results from empirical patient data collection and the frequency of endorsements in percentages for the clinical trials in GBS. The summary sheets assisted participants when selecting domains in the working group. They also included specific information about the categories of ICF within the domains.
The participants were assigned to two working groups (WG) which comprised 12 participants (each included a physician and group of allied health professionals: physiotherapist, speech pathologist, occupational therapist). Participants worked through each category and adequate time was spent on each component. Each group had a leader who was an experienced clinician. A coordinator for each group advised the WG leaders and coordinated discussion and voting session with the experts in the two groups (KV and VK). Results of the two working groups were then presented to the participants for feedback and to resolve discrepancies and problems with category selection. A plenary session integrated all feedback from both groups and helped participants with selection of categories. In the final round all participants reviewed their selection of categories based on feedback and discussion and made their final decisions. The selection process for GBS core as well as brief sets involved three rounds where participants reviewed facts, discussed opinions and then cast votes. The vote involved two levels, a vote for the domain and for a specific category within the domain. Participants voted ‘yes’ for a specific category within a domain if they considered the category to be
important. Participants selected specific categories to hierarchy level 2 or higher. All experts were asked to agree on the spectrum of relevant and typical diagnosis of GBS prior to the voting process. They were asked to ignore co-morbidities, complications and drug-related side effects as they were addressed by core sets for other ICF core sets. In the first step of the consensus process, the experts discussed and made their decisions for all of the 361 second-level categories (first round). The votes, pros and cons, and arguments were recorded. The results of both groups were summarised and presented to the plenary session. All categories which received less than 50% of all votes were eliminated at this point and only those that received greater than 50% votes were included. This cut-off is similar to that reported in other studies. After discussions in the plenary session, further discussions and a second decision was made in the second round voting and each participant was asked to rank each category.
The results of this were presented and discussed in a second plenary session in the third round. This round also reviewed the undecided categories in the previous voting round. A category was included in the ICF core set if it received at least 50% of votes. A category was also included if the experts presented a strong positive reason for inclusion of a category after discussion concerning the pros and cons of that category. The final plenary session nominated the categories included for the brief set for GBS and the percentage of experts willing to include the category.