Off-label use of antipsychotic medication in people with intellectual disabilities
Ramerman, Lotte
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Exploring barriers and facilitators
in the implementation and use of
guideline recommendations on
antipsychotic drug prescriptions for
people with intellectual disability
Lotte Ramerman, MSc
Pieter J. Hoekstra, MD, PhD
Gerda de Kuijper, MD, PhD
Published in the Journal of Applied Research in Intellectual Disabilities (2018); 31,
1062–1070.
Abstract
BackgroundIt is unknown why professionals’ adherence to guideline recommendations on antipsychotic drug prescription in the intellectual disabilities care is insufficient. This study aimed to explore barriers and facilitators in the implementation and use of these recommendations.
Method
In-depth interviews with four intellectual disability physicians, two psychiatrists and five behavioural scientists were used to explore the implementation and use of guideline recommendations.
Results
Barriers in adhering to recommendations were lack of collaboration of different disciplines involved in the treatment of psychiatric and behavioural disorders and lack of enforcement of an appropriate monitoring of side- and treatment effects. When guideline recommendations were translated into organizational policies, clinicians were able to divide responsibilities and tasks, needed to appropriately implement guideline recommendations in daily clinical practice. Conclusion
To facilitate the use of guideline recommendations, organizations should translate recommendations into organization specific policies, involving physicians and behavioural scientists in this process, while simultaneously creating more practical and technological support.
Introduction
There are well-established guidelines for prescribing antipsychotic medication including recommendations on the monitoring of potential side-effects of antipsychotic drugs, aimed to maintain and improve quality of care. Also, for people with intellectual disabilities there are a number of guidelines available, which may be used when intellectual disability specified assessments and treatments are needed. Examples of these guidelines are from the National Institute for Health and Care Excellence (NICE) and the Dutch association for Intellectual Disability physicians (NVAVG) on antipsychotic- and psychotropic- drug prescription and the NICE guideline on the treatment of challenging behaviour (NICE, 2015; NICE, 2016; NICE, 2017; NVAVG, 2007; NVAVG, 2016).
All guidelines provide similar recommendations on prescribing antipsychotic drugs for challenging behaviours, such as irritability, stereotypical behaviour and hyperactivity. They all state that antipsychotics should only be prescribed as a last resort after thorough evaluation and treatment of the causes of the challenging behaviours; and treatment should be short-term (NICE, 2015; NICE, 2016; NICE, 2017; NVAVG, 2007; NVAVG, 2016). However, in all users of antipsychotic medication, also when prescribed for psychosis or schizophrenia, the medication should be used alongside psychosocial and psycho-educational interventions; and treatment effects and side-effects should be monitored (NVAVG, 2007; NVAVG, 2016).
In the Netherlands, people with intellectual disabilities receive their health care, including mental health care, through medical and psychological services affiliated to Intellectual Disability (ID) service providers, or through family practice health care centres and mental health care for the general population. Studies in general mental health care have shown that adherence to guidelines may lead to lower relapse rates (Melfi et al., 1998), increased symptom reduction, more treatment satisfaction (van Dijk, Oosterbaan, Verbraak, & van Balkom, 2013) and better overall quality of care (Bauer, 2002). However, implementation of guidelines requires intensive and multifaceted strategies to achieve successful use of the guidelines in practice. Only then are treatment outcomes positively influenced (Weinmann, Koesters, & Becker, 2007).
Implementation of guideline recommendations in ID health- and mental- health care may be difficult due to setting culture, lack of evidence based orientations of clinicians and lack of support of the ID service providers’ management boards to facilitate the implementation process (Arora et al., 2016; Eguale et al., 2012; de Kuijper & Hoekstra, 2017; Latimer et al., 2014; Tang et al., 2016). In the current care for people with intellectual disabilities, adherence of clinicians to guideline recommendations, including the prescription of antipsychotic drugs, is insufficient,
in the Netherlands as well as abroad. This can be seen in the frequency of monitoring of side-effects, which varies considerably between settings and with regard to range of symptoms that are being assessed (Griffiths, Halder, & Chaudhry, 2012; Marshall, 2004; Paton, Bhatti, Purandare, Roy, & Barnes, 2016; Paton et al., 2011; Ramerman, de Kuijper, & Hoekstra, 2017; Teeluckdharry et al., 2013; Thalitaya, Udu, Nicholls, Clark, & Prasher, 2011). Furthermore, the frequency of evaluating the possibility of lowering the dose or the need for on-going treatment with antipsychotic drugs according to guidelines advices varies, with evaluations hardly ever resulting in a dose reduction (Marshall, 2004; Paton et al., 2011; Thalitaya et al., 2011). In the Netherlands, it is recommended to use validated scales to evaluate treatment, such as the Problem Behaviour Inventory or the Clinical Global Impression Scale (NVAVG, 2016). However, only 2.7% of the treatments are actually being evaluated with such a scale (Ramerman et al., 2017). As a results treatment often becomes long-term (Ramerman et al., 2017). However, it has been found that prescribers often do explain in the patient records their reason for continuing the antipsychotic drugs (Paton et al., 2011).
In the Netherlands and abroad a special point of concern is the lack of adherence to ID prescription guidelines’ advices with regard to the prescription of antipsychotic drugs when prescribed for the treatment of challenging behaviours (de Kuijper et al., 2010; Griffiths et al., 2012; Paton et al., 2011; Ramerman et al., 2017). To our knowledge, there are no studies available that explored factors influencing the implementation of guideline recommendations on antipsychotic drugs for people with intellectual disabilities. Therefore, the aim of this study was to explore the barriers and facilitators that clinicians experience in implementing and using guideline recommendations on antipsychotic drugs prescription in mental health care for people with an intellectual disability.
Methods
DesignIn this explorative study, qualitative interviews with clinicians (n=11) were used to explore the barriers and facilitators in implementation and use of guideline recommendations on the prescription of antipsychotic drugs in people with intellectual disability. The semi-structured interviews (one with each clinician) were guided by a questionnaire, based on a theory of Fleuren et al. on implementing health care innovations, such as new guidelines (Fleuren, Wiefferink, & Paulussen, 2002; Fleuren, Wiefferink, & Paulussen, 2004; Oudejans, Nabitz, & Schippers, 2009). In the questionnaire, various factors illustrating the determinants, which may influence the implementation process, could be marked as hampering, supporting, or of no influence. The preparatory “Hampering and supporting factors questionnaire”, developed by Fleuren et al (2002, 2004), was used as a semi-structured interview schedule to obtain information on barriers and
facilitators in the implementation and use of guideline recommendations on antipsychotic drug prescription. Clinicians were encouraged to explain the answers they had given and to provide examples derived from their own experiences. Interviews, conducted by the first author, lasted between 40 and 60 minutes and were all recorded (with consent) and transcribed.
Theoretical framework
The theory of Fleuren et al. (2002, 2004) and the “Hampering and supporting factors questionnaire” corresponding with the theory of Fleuren et al. were used in this study as a theoretical framework, to conduct the interviews, to analyse the data and to structure the results. Fleuren et al. (2002, 2004) developed a theory of implementing health care innovations, such as new guidelines (Fleuren et al., 2002; Fleuren et al., 2004). The theory describes the process from adoption, through implementation, to institutionalization. In the adoption phase the guidelines are developed and distributed, after which the guidelines are being implemented into clinical practice. Finally, when the guidelines have been successfully implemented, there is institutionalisation of the guidelines, enabling reflection and improvements (Fullan, 2007). According to Fleuren et al. (2004), the phase of implementation is influenced by five determinants (Fleuren et al., 2004; Paulussen, 1994): the users, the innovation itself (the guideline recommendations), facilitation, organization and socio-political environment. These domains are further explained below for the specific context of the present study.
1. The characteristics of the users of the innovation (here, the health care professional): examples are knowledge and feelings of ownership of the guideline recommendations, and compatibility of the recommendations with daily tasks of the users.
For this study, the focus has been on the clinicians who are directly involved in the mental health care of people with intellectual disability: Intellectual Disability (ID) physicians, psychiatrists and behavioural scientists. ID physicians are certified specialized physicians in health care, including mental health care for people with intellectual disabilities. Psychiatrists have expertise in mental health care. Behavioural scientists are professionals with a university master’s degree in behavioural sciences, including certified mental health care psychologists and general educational specialists, with an expertise in people with intellectual disabilities.
In the Netherlands, ID physicians or psychiatrists prescribe antipsychotic drugs. They are also responsible for the initial and follow-up assessments of behavioural response and side-effects. However, behavioural scientists are involved in the day-to-day care of clients and the first handling of challenging behaviours. In addition, behavioural scientists monitor clients from a general perspective (not just with regard to antipsychotic drugs).
2. Characteristics of innovation itself (the guideline recommendations): examples are the quality and content of the guideline recommendations. The guideline recommendations on antipsychotic drugs from the guideline on use of psychotropic drugs from the NVAVG are specifically targeted in the interviews. The recommendations on prescribing and monitoring antipsychotic drugs and use of psychosocial treatments largely overlap with NICE guidelines. Organization specific guidelines are not a part of this determinant. 3. The facilities needed for successful implementation of the guideline recommendations:
examples are support by staff, management or technology, and available time for treatment for each patient. This includes the electronic patient records, which were implemented on a national level, though the systems used differ between organizations. 4. The characteristics of the organisation in which the guideline recommendations are
being implemented and used: examples are the process of decision-making, expertise at team level, collaboration in the organization and division of responsibilities.
In this study, two types of organisations were distinguished: general mental health care institutions which also provide care to people with intellectual disabilities and ID service providers’ institutions which provide both mental and somatic health care; and support of management.
5. The characteristics of the social-political environment: examples are national legislation and regulations, health insurance organizations, willingness of the client and their network (family or direct care staff) to participate in the treatment, support of co-workers. This also includes the process of dissemination of guidelines to the organizations and endorsement from government or health insurances.
Setting and participants
Participants for the interviews were selected from the ID service providers and ID mental health care organizations that were participating in a larger research project on prescription practice of antipsychotic drugs and adherence to guideline recommendations. Participating clinicians were staff members of medical and psychological services affiliated with living facilities of the service providers or staff members of the ID mental health care teams of mental health organizations. The ID service providers provided 24 hours per day care and support in congregated larger or smaller scale centres and offered specialized ID health care. Most of these clinicians were familiar with or used the NVAVG guideline on psychotropic drugs (NVAVG, 2016).
As this is the first study on this subject, we aimed to include the most knowledgeable and experienced clinicians within the participating organizations. ID physicians and psychiatrists were invited for the interviews when they were the only physician in their organization or when they were suggested as the most knowledgeable on the subject of the interviews. Physicians were asked to also invite a behavioural scientist from their organization as a candidate interviewee. Two psychiatrists, four ID physicians, and five behavioural scientists from five different organizations participated in the study. Of these clinicians, three ID physicians and three behavioural scientists worked in medical and psychological services of ID service providers. In addition, two psychiatrists, two behavioural scientists and one ID physician worked in mental health care organizations. All had multiple years of experience in working with people with intellectual disability and challenging behaviours.
Data analysis
All interviews were transcribed verbatim in Dutch and reread several times to gain insight into their content before coding was started. Subsequently, all transcripts were analysed separately by means of pre-set codes, with a predetermined codebook that was expanded on during coding when necessary. The codes were derived from the different items of the questionnaire of Fleuren et al. (2002) to identify the major concepts of implementation in the interviews (Fleuren et al., 2002). By means of Atlas.ti, a software program for qualitative analysis, codes were applied to quotes in the transcribed interviews. When quotes did not address any of the predetermined codes, new ones were created and added to one of the five domains (Users, the innovation/ the guideline recommendations, facilitation, organization and socio-political environment). When applicable, several codes could apply to one quote.
After the first round of coding, all individual transcripts were merged, organized by codes and grouped into the domains of Fleuren et al. (2004). Within the domains quotes could still be traced to the discipline of clinician who provided the quote. In a second round of pre-set coding, the merged transcripts were coded as barrier, facilitator or both, in the use of guideline recommendations, as determined by the preparatory questionnaire or as mentioned by the interviewee. Furthermore, additional codes were applied for suggestions to improve the use of guideline recommendations. This approach enabled the comparison of important aspects of implementation between the different organizations and between the different disciplines. Several quotes were selected to better illustrate some of the issues raised in the results section. For the purpose of this paper, these quotes were translated from Dutch into English by the author.
Results
An overview of the five domains determining the implementation and use of the guideline recommendations on prescribing antipsychotic drugs is provided below. Results were based on the experiences and opinions of the interviewees and structured according to the five domains: users, the innovation/the guideline recommendations, facilitation, organisation and the socio-political environment. Table 1 provides an overview of whether or not the respondents tried to adhere to the guidelines, interpreted by the author from the respondents’ answers during the interview.
Table 1. Overview of whether or the respondent tried to adhere to the guideline recommendations. Adherence Non-adherencea
ID physician 4 0
Psychiatrist 1 1
Behavioural scientist 2 3
a Intentional or unintentional (not aware of the guideline).
Users
When discussing the opinions of interviewees on the treatment with antipsychotic drugs of their clients, all eleven respondents focused on prescribing the drugs for challenging behaviour, not for psychotic symptoms or schizophrenia. Beyond the diagnostic problems of psychotic symptoms and schizophrenia, little was mentioned on evaluating the treatment and monitoring of side-effects. One psychiatrist added that psychosis is a “robust” criterion for antipsychotic drug prescribing, followed by one ID physician stating:
We can diagnose a psychosis by discontinuing the antipsychotic drugs. If the client derails or becomes psychotic, then you have your reason. Then we will not change the antipsychotic drug again (ID physician 3)
The eleven respondents all agreed that use of antipsychotic drugs can only account for a small percentage of the treatment for challenging behaviour; the other larger percentage is through adaption of the social and living environment of the clients and education and support of the support professionals’ team by behaviour scientists and daily care by direct care staff. In addition, they agreed that guidelines are necessary, but they wondered whether the direct care staff would agree:
Often when we say, “there is no scientific evidence”, they say, “but for this client it works!”. Because when we tried to discontinue before, it really did not go well. It is the combination: the direct care staff know they take less behavioural medication, so they think: oh no! (ID physician 2)
In addition, one ID physician mentioned that switching between two kinds of antipsychotic drugs when there is a suspicion for the presence of a psychosis is even harder to explain to direct care staff, even when there are severe side-effects.
However, there are differences in how clinicians act after antipsychotic drugs have been prescribed. The initial evaluation of effect is primarily done by ID physicians or psychiatrists and takes place between one and six weeks after the drug has been started. All four ID physicians and both psychiatrists evaluate the effect of the dosage and ask about side-effects. The role of behaviour scientists is less clear. They are continuously in contact with the direct care staff teams, to guide the provision of care of the clients, especially when clients have serious challenging behaviours.
Systematic evaluation of the symptoms of challenging behaviours by physicians and behavioural scientists is not being done after the antipsychotic drug use has started. However, clients’ behaviours are discussed in monthly meetings of the five behaviour scientists and the direct care staff. Suggestions were made that baseline measurements and short, target oriented scales would be helpful, as current scales are experienced as too long. However, one psychiatrist opposed that their own clinical judgement is more valuable than using standardized scales. Two ID physicians felt ownership of the guideline recommendations, as they were involved in translating national guidelines into organisation specific treatment policies. Four out of five behavioural scientists were unaware of guidelines on antipsychotic drug prescription, even though their disciplines are mentioned as part of the multidisciplinary treatment team in these guidelines.
As a behavioural scientist, I am not schooled enough in medication, also not in discontinuing medication. (Behaviour scientist 1)
The guidelines are very strongly oriented towards physicians. You can hardly expect me, if I did not hear of them through a physician, to know what the content is, or that they exist. How do you reach this target audience? That is interesting. (Behaviour scientist 5)
One clear barrier is the workload that all eleven interviewees experience. Agendas are always full, making joint annual evaluations with behavioural scientists and ID physicians difficult. In
one organization, there is only one part-time ID physician, who is only able to see clients that are unstable. The eleven interviewees experienced a lot of work-load, not having the time to implement new developments, but they also agree this is part of the job.
The innovation/the guideline recommendations
When asked how interviewees would organize the care for clients who are going to use antipsychotic drugs or for clients who already use antipsychotic drugs, they largely describe what is recommended by guidelines. However, depending on the interviewee, the guidelines themselves can both be a barrier and a facilitator. One psychiatrist, one ID physician and one behaviour scientist, who were involved in creating treatment policies in their own organization, sometimes based on existing guidelines, were positive. However, one behaviour scientist suggests that guidelines in general are barriers, as they are made up from behind a desk. In addition, three out of the four ID physicians found that most guidelines orient too much on psychiatry, missing specificity for people with an intellectual disability.
It is very unspecific. An attempt was made to subdivide in behaviour types, which actually do not exist. It provides very rough guidance, but in specific cases you still do not know what to do. Often it is just a matter of trial and error. (ID physician 2)
Both psychiatrists, on the other hand, missed information in the guidelines on assessment, specific for people with intellectual disabilities.
The guideline of the NVAVG is currently being revised, but there is still the same discussion: first there must be unambiguity on the assessment procedure of people with intellectual disabilities. (Psychiatrist 2)
Both psychiatrists and the four ID physicians agreed that it is difficult to differentiate between psychosis, challenging behaviour or other mental health conditions in people with intellectual disability and guidelines lack the specific diagnostic tools they feel they need.
Facilitation
A facilitator of implementing and using guideline recommendations were the employment of nursing teams. In the organization that had such a team, nurses were responsible for monitoring side-effects and routine laboratory controls. One of the behavioural scientists also found the nursing team a facilitator, making consultations on medication easier.
There was a client who was very aggressive and I suspected that something medically involving medication was wrong (…) I found it very pleasant that I could just stop by the nursing team and consult with them, so they could visit the client. That is a huge asset we did not have before. (Behaviour scientist 2)
The other nine interviewees suggested that the support of nursing teams would improve their adherence to guideline recommendations.
I see many clients under supervision and I lose sight of them, so what does not happen is proper laboratory testing, metabolic monitoring. Actually, we should hire a nurse, whose job it is (…) that all clients who are on medication, who use antipsychotic drugs, have their blood annually tested. (Psychiatrist 1)
The main barrier concerning facilitation is the Electronic Patient Record. The system could be a very useful instrument in evaluating treatment effects, monitoring side-effects and communication between disciplines. In reality, all eleven interviewees uniformly perceive the Electronic Patient Record as a burden, even though they work with different systems. There is no option to follow certain parameters of treatment effects and side-effects. When the system does offer the possibility to monitor certain symptoms or treatment effects, the possibilities are inflexible and time consuming.
It is an Electronic Patient Record that is very devious and actually does not work right this moment [of the interview]. That is caused by the way the Electronic Patient Record was developed: It is actually an accounting program, which they slightly expanded to accommodate clinicians. (Psychiatrist 2)
Twenty-five years ago, I was more on site, now I spend more time on the computer. (Behavioural scientist 3)
In addition, not all data from paper records was added to the system after the implementation of Electronic Patient Records in 2009, making information incomplete. Last, in three of the organisations physicians and behavioural scientists had separate systems, making the exchange of information more difficult.
Organisation
The eleven interviewees spoke about how and to what extent the guideline recommendations were implemented or used in their daily working routine. One ID physician and one behaviour scientist worked for an organisation that did translate guidelines to organisational policy, it was clear who was responsible as main clinician (responsible for progress and monitoring
of treatment) in the treatment of psychotic and behavioural disorders, including additional treatment with antipsychotic drugs:
When we look at antipsychotic drugs I am involved in how long someone takes the drugs, what are the effects, while working together with the physician. He always says: medication is just a small part of the effect we want to achieve. So the main part of the treatment effect is my responsibility. (Behaviour scientist 4)
In the other four organisations with no- or incomplete implementation it was more unclear who the main clinician was for the treatment and management of challenging behaviours of clients: the behavioural scientist or ID physician.
There are no agreements on who is responsible for treatment (…) So that is something we have in common [with behavioural scientists] and that is unclear sometimes, especially for clients with challenging behaviours. They [direct care staff] directly choose to ask a physician, who immediately says that medication is needed, or they choose to ask the behavioural scientist, while there may be a somatic cause of the changing behaviour. (ID physician 2)
These nine interviewees explained that this lack of clarity in who is responsible during the treatment (as main clinician) resulted in additional barriers. First, it hampers a multidisciplinary approach. When antipsychotic drugs are prescribed, the problem often becomes “medical”, and therefore the responsibility of the physician. Sometimes additional treatments are offered, but as one ID physician said:
Sometimes you want to deploy a behavioural scientist, but these professionals are not always available, so then you send an email. Treatment then easily splits into parallel paths, instead of a joined path. (ID physician 1)
Furthermore, the eleven interviewees believed it was the responsibility of direct care staff to signal symptoms of challenging behaviour and psychosis, and to keep track of treatment effects and side-effects. Direct care staff has a direct relationship with behavioural scientists. Behavioural scientists are the contact point for direct care staff and are indirectly involved in the daily care and management of the behaviour of clients. Behaviour scientists were all involved in annual evaluations of clients, while only one physician mentioned that he was involved. In other organisations, physicians relied heavily on direct care staff to signal behavioural and psychiatric symptoms and recognize side-effects, as they did not have the time or the system to see all clients annually. However, they think that the direct care staff is not able to recognize side-effects and behavioural symptoms accurately.
When a client and caregiver come to see me for a consultation and you ask what are you here for. They say, “I have no idea, the agenda said so, I do not know why this client needed to be here”. (…) They [direct care staff] can never exactly explain what is wrong with someone. That is difficult. “He acts crazy or acts different or compulsive”. Yes, so what does he do? He hits sometimes. (…) What could be the cause is not looked at analytically. (ID physician 2)
Socio-political environment
Overall, Dutch legislation (rights and obligations of clients in health care and involuntary hospitalization) was perceived as a clear framework for providing proper treatment, even though the interviewees initially did not always agree with the legislation. New legislation, when first implemented, was often seen as another (administrative) burden on the care they have to deliver. However, interviewees who had to comply with requirements of health insurances were less positive. All shared mistrust in health insurances and financers, questioning their ability to perceive the essence of care for people with intellectual disability. Furthermore, one psychiatrist mentioned that health insurance companies sometimes restrict care by rejecting compensation for laboratory testing in child and adolescent psychiatry.
Clients and their relatives could also function as a barrier or facilitator. Clients with a mild to moderate intellectual disability were often motivated to use as little medication as possible. However, one interviewee explained that the occurrence of behavioural outbursts, e.g., disruptive or aggressive behaviour could be a traumatic experience for the client. Clients with more severe intellectual disability are generally not able to share in the decision-making process of pharmaceutical treatments; they have to rely on their legal representatives and direct care staff to voice their needs. A child and adolescent psychiatrist added that parents sometimes withdrew from further psychological or psychosocial treatments for their child, when on a wait list and felt that the antipsychotic drugs were effective enough.
They [direct care staff] have a knowledge gap. Although, even if they had the knowledge, they would still have an interest in the status quo. (ID physician 3)
Almost all of the interviewees felt support from their direct colleagues for their choices in treatment with antipsychotic drugs. Only one physician disagreed:
There is always support when you start antipsychotic drugs, but not when you want to discontinue. (ID physician 3)
Interviewees experienced and perceived management support in opportunities to provide care according to guidelines advices different. Support from their management was felt as positive
when supplemental care, e.g., intensification of support, was possible. However, other clinicians perceived the support from management as a barrier. They experienced a lack of enforcement from management in providing care according to guideline recommendations for people that use antipsychotic drugs. One physician mentioned he felt pressured sometimes by the management to prescribe antipsychotic drugs to clients with severe behavioural problems to prevent escalation of disruptive and aggressive behaviour, which in turn might dysregulate the behaviour of other clients in the living group.
Discussion
The purpose of this study was to explore the barriers and facilitators clinicians experience in the implementation and use of guideline recommendation on prescribing antipsychotic drugs in different mental health care settings for people with intellectual disabilities.
The four ID physicians and two psychiatrists were all aware of the Dutch guidelines, as the Dutch professional platform, the Dutch association of ID physicians (NVAVG), disseminates them among their members. However, the interviews showed that these physicians also have their own views on prescribing antipsychotic drugs. This resulted in different preferences in the type of antipsychotic drug that was prescribed, the follow-up after prescribing, the necessity to monitor side-effects and the capacities of direct care staff to enable possible discontinuation. These differences between physicians and their effects on prescription patterns were also found in other studies (Eguale et al., 2012; de Kuijper & Hoekstra, 2017; Latimer et al., 2014; Tang et al., 2016). Moreover, the interviewees gave a strong emphasis on prescribing antipsychotic drugs for challenging behaviours, most physicians explaining that in general psychotic symptoms or schizophrenia are often difficult to diagnose in people with intellectual disabilities. One of the psychiatrists suggested developing clearer diagnostic tools to differentiate between psychotic symptoms and challenging behaviours. Further implementation of the DMID-2 might be helpful for this suggestion (Fletcher, Barnhill, & Cooper, 2016).
Another barrier can be found in the setting culture in most of the organisations that provide care for people with intellectual disabilities in this study. Despite guideline recommendations for multidisciplinary treatments, mental disorders and challenging behaviours are still predominantly the responsibility of the ID physician or the psychiatrist, as they are often treated with only medication. Furthermore, as a result, physicians are responsible for evaluation of the effects and monitoring of side-effects. Many of these activities related to antipsychotic drug prescriptions are also suitable for other clinicians, such as behavioural scientists, including the evaluation of treatment effects and providing additional care, or nurses, for monitoring
side-effects, psycho-education and support of direct care staff. However, this study suggests that behavioural scientists may be unaware of the guideline recommendations, as they may believe this is the responsibility of the physicians with the consequence that these are not fully implemented in the whole organization. Implementation of one overall treatment coordinator for each patient may improve the multidisciplinary approach; as such a coordinator can oversee the whole treatment and involve specific clinicians when necessary. This may also prevent role confusion between behaviour scientists and physicians, and lower the workload on the limited number of behavioural scientists and physicians (both ID physicians and psychiatrists). Indeed, one organization showed that a multidisciplinary approach to prescribing antipsychotic drugs is possible, with active collaboration of ID physicians and behavioural scientists, due to making several steps to translate guideline recommendations into their organisation-specific policy. Previous studies also argued a multidisciplinary approach, involving all health professionals in the implementation of guidelines (Forsner, Hansson, Brommels, Wistedt, & Forsell, 2010), using a comprehensive approach involving the whole network of the patient (Grol, 2001; Grol & Grimshaw, 2003), and specifying the guidelines recommendations for the specific setting (Grol & Grimshaw, 2003).
The eleven interviews also showed that caregiver staff could play a role in a multidisciplinary approach, lowering of the workload and finding the right person to provide informed consent for the patient. However, currently inadequate knowledge of antipsychotic drugs and challenging behaviours and frequently changing teams are hindering this. Further education, awareness and involvement in implementing guideline recommendations of caregiver staff may improve this situation.
The interviews showed that clinicians often lack a feeling of ownership of the guideline recommendations. This barrier was also found for other clinical settings by Richens et al. (2004), suggesting that non-specific guidelines can hamper their use, adding that these barriers could be prevented by making guidelines specific for the organization (Richens, Rycroft-Malone, & Morrell, 2004). The interviews showed that, to increase ownership of the guideline recommendations, more involvement of clinicians is needed e.g. by having them translate the recommendations to organization specific policies, such as the metabolic screening policy mentioned by one of the psychiatrists. However, the interviews also showed that without enforcement and facilitation of these agreements by the management of the organization, the use of these policies remains difficult. This was often explained by lack of time and simply forgetting the new agreements when falling back into their daily routine. The professional platforms (NVAVG and health care
inspection) can influence this by further auditing and evaluating the use of guidelines during practice visitations to monitor quality.
The eleven clinicians included in this study agreed that there is high administrative burden and a lack of support that the structure of the electronic patient record offers. These electronic records should not just provide the health insurance organizations with information about the care provided, but should be further developed to suit the evaluation and monitoring of antipsychotic drug use. This might also decrease the administrative burden. Furthermore, the mistrust of health insurance companies may decrease over time as health care for people with intellectual disabilities becomes more integrated into health insurance practices. Financing of intellectual disability care used to be separate from health insurances in the Netherlands. To our knowledge, this is the first study that sought to explore the reasons behind the limited adherence to guideline recommendations concerning antipsychotic drugs in people with an intellectual disability, after several studies raised the issue. However, this study does have some limitations. First, this study set out to explore the reasons behind non-adherence of guideline recommendations. Therefore, we did not include a large sample or an all-encompassing sample. Hence, the results of this study can only raise the issues of implementing guideline recommendations into care for people with intellectual disabilities or provide a starting point for further research. A second limitation of this study was the inclusion of only clinicians and not all stakeholders from the network of the person with an intellectual disability, such as direct care staff and legal representatives. It would be advisable to include direct care staff and legal representatives in future research or when organizations create their own strategies to implement guideline recommendations. Last, all countries have some unique characteristics of those involved in the care for people with intellectual disabilities. However, despite certain differences, studies have shown that the prevalent and long-term prescription of antipsychotic drugs is not a country specific issue. We therefore tried to focus on universal elements, such as applicability of general guideline recommendations across different organisations and the different professionals that are involved in the care for people with intellectual disabilities. To conclude, this study provides a starting point for further scientific research or organization specific implementation studies. This study raised the following points that might be of relevance for future studies: First, guideline recommendations need to be translated to accommodate organization specific needs. Second, all clinicians should be included in this process, in order to increase the suitability of the recommendations for clinical practice. Last, the recommendations
should be facilitated and enforced, for example, by supporting nursing teams or by providing technological possibilities for monitoring and evaluation.
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