This study found both similarities and variations among 12 Dutch RCs offering rehabilitation for young patients with ABI. Similarities regarding the presence of admission and discharge criteria, specialized teams, and structural follow-up were present in all RCs. Considerable differences were found as well, specifically regarding the description of the structure of rehabilitation care. Insights into similarities and differences may help reduce practice variation and optimize the quality of care for young patients with ABI. Here we discuss the implications of similarities and variations found in our study and provide recommendations for clinical practice and future research.
The description and use of admission and discharge criteria is considered important in clinical practice. Such criteria optimize resource allocation, ensure consistent patient treatment, promote patient safety, and enhance communication among healthcare professionals. Adhering to these criteria could enhance the quality of care within RCs. The importance of the description and use of admission and discharge criteria was also underlined in previous research. (Hersenstichting 2016 / 2022; Donabedian 2005; Wade 2020; Organization 2007; Klokkerud et al. 2012) Although all RCs in our study reported the presence of admission and discharge criteria, substantial differences in their actual descriptions were found. This is in line with previous studies. (Groeneveld et al. 2016; Grotle et al. 2013) A large variation (i.e., only mentioned by 5 RCs) was found in the admission criterium that “patients need to have participation restrictions in daily life”. This variation is remarkable because optimizing participation is considered one of the ultimate goals of pediatric rehabilitation. (de Kloet et al. 2015; Imms et al. 2016)
The lack of generalized admission criteria that could be used in all RCs that provide pediatric ABI rehabilitation could be due to the heterogeneity of the population, although we have not investigated the cause of this variation. In addition, the attainment of rehabilitation goals, which is highlighted in the literature(Barclay 2013), was considered an important discharge criterion among most RCs as expected, although this was not mentioned by all RCs. In line with previous literature that found variations in admission and discharge criteria in rehabilitation (adult stroke/arthritis populations)(Groeneveld et al. 2016; Grotle et al. 2013), we recommend reaching national consensus on clear and explicit criteria.
Regarding the organization of rehabilitation, the data collected among Dutch RCs show similarities and considerable differences as well. RCs were consistent in the need for specialized teams, with a wide variety of ABI-specific expertise. All RCs noted that they had a permanent team specialized in pediatric ABI. Yet, a remarkable finding was that despite the specialized teams being present in all RCs, not all teams had a general treatment program with specific outcome measures and interventions that would suit the target group present. The absence of treatment program protocols could not only result in variations between RCs but also between team members within an RC. The lack of treatment program protocols in some RCs was also in line with the findings of previous studies that investigated practice variation(Groeneveld et al. 2016; Grotle et al. 2013). Access to a treatment program protocol or guideline could reduce variation within teams and between RCs, whilst keeping the individual needs and wishes of patients (and their families) in mind. However, a national treatment program that could be used in all RCs when treating this population is lacking to date. Therefore, the creation of a national treatment program/guideline for the target group in outpatient rehabilitation is recommended.
While all RCs used age cut-offs to determine whether a young patient should be treated in a pediatric-appropriate or adult-appropriate rehabilitation setting, results showed variations in the cut-off-points across RCs (58% used 4–18 years as cut-off-point, 42% 4–20 years old). This could be due to the fact that some patients between 18 and 20 could better fit in a pediatric setting and some in an adult setting, based on their current needs and goals or purely based on age regardless of needs and goals.
Some RCs have “transition-teams”, to emphasize age-appropriate care for young adults where the focus lies on their transition from childhood to adulthood in relation to their ABI. Despite the importance of delivering age-appropriate care(Kingsnorth et al. 2021), this was only seen in four RCs. Even though we do recognize that some RCs might not have the team/treatment capacity to organize this, we recommend focusing on more age-appropriate care.
All RCs reported that there are standard consults where treatment is being evaluated before ending rehabilitation and that there are structural follow-up appointments with rehabilitation physicians. These physicians discuss with patients/parents if and which form of aftercare is appropriate. Some RCs mentioned that referring to care facilities closer to home was considered important. National standards of care/guidelines also describe that providing sufficient aftercare for patients (also young patients with TBI/ABI) is important. (Hersenstichting 2016 / 2022; Koch-Gromus 2015) Our results showed differences between RCs in terms of the timing and frequency of aftercare, as well as the place where this is provided. This could be due to the current focus of pediatric rehabilitation care lies on individual patients, where every ABI, family, and system of patients is unique. This is important to consider in decision-making. In line with previous research, (Groeneveld et al. 2016; Donabedian 2005; Wade 2020; Organization 2007; Grotle et al. 2013; Koch-Gromus 2015; Rivara et al. 2012; Whyte 2012; Klokkerud et al. 2012) setting clear criteria regarding the place, timing, and frequency of aftercare based on age and type of injury instead of only looking at individual patients could help to optimize aftercare for this pediatricABI population. Due to regional differences in care pathways across RCs in the Netherlands, it is important to first look into possibilities to strengthen criteria regarding the place, timing, and frequency of aftercare within each RC separately before reaching national agreements on this matter.
Strengths and limitations
To date, this is the first (Dutch) study that investigated similarities and differences (practice variation) between RCs regarding the care for young patients with ABI on a considerably large scale (12 out of 16 RCs in the Netherlands). A structured approach was used for identifying similarities and differences among RCs. The recommendations that were provided in this study provide useful insights whilst keeping differences in care pathways between regions in mind. This ‘look behind the curtains’ in 12 RCs could enable collaborations between RCs and could eventually help reaching consensus on rehabilitation structures that currently vary across RCs that provide care for young patients with ABI.
This study also had some limitations. In this study, we explored the way rehabilitation care for children with ABI is organized in different RCs in The Netherlands. Therefore, we asked healthcare professionals how care is organized in the RC they work in. We have chosen to ask healthcare professionals because they have the role in the delivery of care. This may be a limited perspective since actively involving managers and policymakers might have resulted in a broader view. Future research could, for instance, use focus groups to potentially obtain a broader view per RC. Focus groups are a valuable research method that provides deeper insights and diverse perspectives, involving patients and relatives to enhance understanding of interventions' impact and outcomes. Furthermore, only Dutch RCs were included in the present study, thereby limiting outcomes in terms of generalizability for the care for young patients around the globe. However, this study provides information on how to obtain information regarding similarities and differences between RCs which could be useful for other countries/regions to look into their own possible practice variations.
Second, the answers that were provided by the participants could possibly be influenced by factors that were beyond the boundaries of their profession such as the financial influence of insurance companies and admission criteria of other care facilities in the aftercare process. The interplay between these factors should be further investigated.