Specialized psychiatric services: patient characteristics, referral practice and length of stay in a representative clinical sample 2010–2016

Abstract

Background

Mental health services for patients intellectual disabilities (ID) and additional mental illnesses are only sparsely studied.

Objective

The objective was to describe a representative sample of patients with ID in a specialized psychiatric department.

Methods

Data were collected from case files in a 7-year period. Of 143 invited patients, 133 participated.

Results

More than 60% were admitted involuntarily. Schizophrenia was found in 30.1%, mood disorder in 25.6%, and anxiety disorders in 15.8%, Obsessive Compulsive Disorder (OCD) in 8.4% and Post Traumatic Stress Disorder (PSTD) in 12.9%, PD in 14.3%, and ADHD in 12%. Average waiting time was 6.1 months. Length of stay was 9.1 months for the inpatients.

Conclusion

Services for patients with ID appear to still be reliant on inpatient units for at least a proportion of their patients. More research is needed to find out why this is. The results raise questions about referring, compliance between psychiatric diagnosis, and interventions.

Introduction

Patients with intellectual disabilities (ID) and additional mental illnesses have not traditionally been treated in psychiatric hospitals. One of the main reasons is that, formerly, most of these patients would have spent their adult lives in specialized central institutions for adults with ID. Today it is accepted that persons with ID may develop the full range of mental illnesses (Deb et al. 2001; Cooper et al. 2007; Smiley et al. 2007; Bakken et al. 2016) and are in need of a range of psychiatric services. For people of average intelligence, inpatient, and outpatient treatment of mental illness has been established. It has been assumed that patients with ID will benefit from being treated by general psychiatric services; i.e. psychiatric services for all people, not for defined groups, when they exhibit psychiatric problems (Hackerman et al. 2006). However, few people with more than mild ID have access to general psychiatric treatment, including both inpatient and outpatient treatment (Chaplin 2009).

In a review of different psychiatric services for persons with ID (Chaplin 2009), it was reported that people with ID require more staff than neurotypical patients when they develop mental illnesses. People with moderate, severe or profound ID tend to be admitted to specialized psychiatric services; i.e. for people with ID; especially to inpatient units. Professionals working in general psychiatric units do not, as a rule, possess knowledge of mental illness in people with intellectual disabilities (Taua and Farrow 2009).

In a review published in 2013 that included 25 samples of patients with ID receiving inpatient mental health care, psychosis was the most common psychiatric diagnosis, followed by affective disorder and anxiety disorder (Bakken and Martinsen 2013). Behavioral problems were observed in a majority of the patients. It appears that patients with ID and mental illness admitted to psychiatric inpatient units have particularly complex conditions, which may include psychosis or affective disorder, challenging behavior, often with additional physical conditions, as well as limited verbal skills (Dudley et al. 1999). Despite a few papers published within the last decade, there are still few representative papers on patients with ID receiving mental health care in both outpatient and inpatient specialized psychiatric services.

Most studies comparing outcomes of specialized psychiatric services to general psychiatric services for patients with ID find better outcomes in the specialized services, especially for patients with more severe ID (Xenitidis et al. 2004; Jess et al. 2008; Lake et al. 2016). However, most countries do not seem to provide any systematic services for patients with ID and mental health problems (Bakken and Martinsen 2013; Lake et al. 2016). Even in a small area like Scandinavia; Sweden, Denmark, Norway, and Finland, organize their services quite differently. Sweden has no system for specialized psychiatric services. Denmark use ambulatory specialized psychiatric services only. Norway has altogether 16 beds and additional ambulatory specialized psychiatric services, while Finland has more than 200 beds and additional policlinics designated these patients. At the same time, clinicians in the same countries frequently speak of problems with access to general psychiatric services for patients with ID and mental illness.

Patients with ID and mental health problems may present with complicated symptoms and suffer from high symptom burden (Bakken and Martinsen 2013; Lake et al. 2016), which again elicit high costs, especially if the patients’ problems remain unrevealed and untreated (Bakken et al. 2014b). Specialized psychiatric services for patients with ID may therefore bring about not only improved mental health for the actual patient group, but also more cost effective services. Research on treatment finds that for the most part treatment strategies developed for patients in the general population also work when the patients have ID. However, these treatment strategies must be adapted to each patient’s level of intelligence, speech ability, and eventual idiosyncratic language and behavior. Also knowledge about how psychiatric phenomenology covariates with level of ID and eventual neuropsychiatric conditions like autism premise this use of commonly used strategies from general psychiatry (Bakken and Sageng 2016). Hence, skills required in such specialized psychiatric services include being capable of interpreting behavioral equivalents of mental illness symptoms, responding adequately to unusual utterances, and occasionally communicating in a predominantly non-verbal way (Bakken et al. 2017). Another factor that may favor specialized services is that such services may be interested in clinical improvements, and thereby initiate research. Treatment strategies including psychosocial interventions are only sparsely studied. The most studied treatment is medication (Tyrer et al. 2008; Matson and Mahan 2010). However, psychotropic medication and especially antipsychotics have been widely used to reduce behavior problems in patients with ID, which is a questionable practice (Tyrer et al. 2008; Matson and Mahan 2010). Beside medication, an increasing number of studies on psychotherapy are published. Milieu therapy on the other hand, is understudied (Bakken and Sageng 2016), although milieu therapy is the only psychosocial intervention that can be provided patients within all cognitive levels. As treatment is understudied, it is interesting to investigate if treatment strategies match the diagnoses provided according to treatment strategies recommended for patients in the general population (Bakken et al. 2016).

To sum up; a representative clinical sample of patients in a specialized psychiatric department may shed light on a number of issues and may help planning psychiatric services for patients with ID in the future. For such planning, knowledge about waiting time before admission, length of stay, patients’ characteristics, and also main treatment approaches will be of interest. Also follow up is interesting. In the general population; extensive co-operation between different services and long lasting follow up of the patients is assumed to be necessary to gain symptom relief for the most severely ill patients (see for example van Os and Kapur 2009). Also for patients with ID, inter disciplinary co-operation is recommended (se for example Chaplin 2009; Bakken et al. 2016), but understudied. Clinical experience in the actual specialized psychiatric department suggests the importance of follow up after discharge in order to convey the clinical implications following a more profound understanding of the patients’ diagnoses and day to day difficulties.

The present paper presents a representative sample of patients in a regional specialized psychiatric department for patients with ID over a seven-year period.

Objective and research questions

The objective of the present study was to study patient characteristics, referral practice, waiting time before admission and length of stay, and treatment in a representative clinical sample of patients with ID and additional confirmed or suspected mental illnesses admitted in a specialized psychiatric unit for adults with ID. Main treatment strategies will also be studied.

Consequently, we wanted to answer the following questions:

• What characterizes patients admitted for specialized psychiatric services?

• What characterizes the treatment strategies?

• What is the delay before being admitted?

• How long do patients stay?

• What is the duration of follow up after discharge from inpatient stay?

Methods

Design

The design is quantitative and descriptive. Data have been collected from patient case files. The patients and their families were not observed or interviewed or otherwise affected by this study after having given their consent.

Setting

The setting is a regional specialized psychiatric unit for adults with intellectual disabilities (SPS-ID) in the South-East health Authority in Norway (Bakken and Smeby 2004). This unit is part of university hospital. It has two inpatient wards with a total of 10 beds and an ambulatory outpatient unit. The latter opened in 2014. The catchment area has a population of around 2.9 million people. The SPS-ID has about 75 full positions including 3 psychiatrists, 7 psychologists, 1 nurse practitioner, about 30 milieu therapists most of them specialized in mental health, nurse aids, and staff taking care of office tasks, development, and research. About half of the milieu therapists are social educators, and thereby trained in behavior sciences. The rest were nurses. Most of the patients are referred from general psychiatric services or habilitation services. However, as this unit admits patients from 16 years of age and upwards, a few of the referrals are from child services. All referrals must be from other specialist services, i.e. psychiatry or habilitation; referrals from community services or general practicing medical doctors are not accepted.

Participants

Participants comprised patients in the specialized psychiatric section for adults with intellectual disability (SPS-ID). Criteria for being admitted were having an ID and a suspected or confirmed mental illness. Patients with autism spectrum disorders, with an IQ score within the normal range, could be admitted if they experienced a substantial reduction in global functioning, equivalent to ID. Psychiatric diagnoses were made by responsible psychiatrist and psychologist, together for each patient. Additionally, The SPS-ID discusses all assessments in a weekly meeting where psychiatrists, psychologists, and responsible milieu therapist discuss diagnoses and treatment approaches. The diagnostic process includes observations, third party information, clinical interview, and use of psychometric instruments. Third party information is systematically obtained from family members, from referring entities, from community services, and from other relevant sources.

All patients who had been discharged from the SPS-ID either from inpatient care plus follow up, or from ambulatory services from 2010 to 2016, were asked to participate. It was decided to start in 2010 because long term patients who were admitted in the SPS-ID during the 1960s–1980s were all discharged by the end of 2009. The SPS-ID was established in 1990 during the deinstitutionalising period in Norway in order to collect patients with ID living in psychiatric hospitals and return them to their home municipalities (Nøttestad and Linaker 2001). However, through the 1990s and 2000s, the SPS-ID was transformed into a specialized psychiatric unit for patients with ID. From 2014, the SPS-ID opened a unit for ambulatory services. The number of patients in this unit is therefore lower than the inpatient unit (27 of 133 patients). Altogether, 143 patients were discharged from the SPS-ID in the actual period. Hundred and 33 consented to participate in the study.

Variables

The variables include age, gender, IQ level, presence of autism spectrum disorder, genetic variation, psychiatric diagnoses, time frame from referral to admission, legal status of admission (voluntarily or involuntarily), length of stay, duration of follow up after inpatient stay, total duration of services from the SPS-ID, as well as treatment approaches. Treatment comprises the following categories: medication (anti-psychotics, mood stabilisers/anti-epileptics, anti-depressives, anxiolytics), psychotherapy, milieu therapeutic approaches (protection, validation, task mastering, physical activity) and an environmental risk management approach (seclusion).

Analyses

All data were collected from case files and computed using SPSS version 23. For this paper, we wanted an overview of the sample and we consequently used descriptive analyses.

Ethical considerations

Most patients’ consent was obtained from the patient retrospectively. Only a few of the patients were considered to be capable of giving their consent, i.e. less than 10 patients. Close family or legal guardians consented on behalf of the remaining patients.

Permission to conduct the study was given by the following authorities: director of the SPS-ID, and the hospital’s Privacy Protection Supervisor.

Data was anonymised and it will not be possible to trace back specific data to any particular participant.

Results

The results will be presented in two parts. Part one includes results for the variables age, gender, referrals, ID level, autism, psychiatric diagnoses and genetic abnormality for all patients merged. In the second part, results for inpatients and outpatients will be presented separately. The outpatients in the present study were referred mostly for diagnostic assessment. The referring services therefore maintained treatment responsibility when the patients were inscribed in the ambulatory. We therefore have less information about treatment approaches for these patients. Therefore, the results regarding treatment were not relevant to this study. Also follow up is provided inpatients only.

There were a total of 133 participants. Almost half of them had been referred from general psychiatric services (46.6%) and 35.2% had been referred from the adult habilitation services. The child psychiatric services referred 5.3% of the patients and, finally, the child habilitation services referred 3.8%. Age at referral was 30.80 years, SD = 11.3 years. There were 65 women (48.9%) and 68 men (51.1%).

The level of intellectual disability included 18% of the patients who had no ID diagnosis. Forty-six point six percent had mild ID and 17.3% had moderate ID. Severe and profound ID amounted to 10.5% (9.0 + 1.5%). Ten patients (7.5%) had an unspecified ID diagnosis. The patients who had no ID diagnosis had a diagnosis within the autism spectrum (Table 1).

Table 1. Patient characteristics for inpatients and outpatients merged.

Variables	The whole sample (percentages of 133 participants)
Age	30.8 years at referral (SD = 11.3)
Gender	Female 48.9%, Men 51.1%
Referred from	Adult Psychiatry 46.6%, Child Psychiatry 5.3%, Adult Habilitation 35.2%, Child habilitation 3.8%
ID Level	Not ID 18.0%, Mild ID 46.6%, Moderate ID 17.3%, Severe ID 9.0%, Profound ID 1.5%, Unspecified 7.5%
Autism	Childhood autism 24.1%, Asperger syndrome 8.3%, Atypical autism 11.3%, other 3.8%
Psychiatric diagnoses, numbers	Zero 16.5%, One 57.9, Two 21.8, Three diagnoses: 3.8%
Psychiatric diagnoses	Schizophrenia 30.1%, Bipolar disorder 11.3%, Depression 14.3%, Anxiety 15.8%, OCD 8.3%, PTSD 12.8%, Personality disorder 14.3%, ADHD 10.5%
Genetic abnormality	No information 35.5%, No genetic deviation 40.1%, 22q11.2 DS 6.0%, Down syndrome 0.8%, Other 17.3%

Note: ID = intellectual disability, OCD = Obsessive Compulsive Disorder, PTSD = Post Traumatic Stress Disorder, ADHD =Attention Deficit Hyperactivity Disorder.

Sixty-two participants were diagnosed with autism spectrum disorder (47.4%). Of the 62, 11 patients had Asperger syndrome, 32 had infantile autism, 15 had atypical autism and 5 patients had ‘another diagnosis in the autism spectrum.’

Altogether, 22 patients (16.5%) had no psychiatric diagnosis in addition to ID/autism. One diagnosis was found in 57.9%, two diagnoses in 21.8%, and three diagnoses in 3.8%.

The most common diagnosis was a psychosis in the schizophrenia spectrum, for the most part, schizophrenia, and 30.1% had this diagnosis. Bipolar disorder (with or without psychotic symptoms) was found in 11.3%. Depression was diagnosed in 14.3% and anxiety in 15.8%. OCD was found in 8.4% and PTSD in 12.9%. Personality disorder was diagnosed in 14.3%. Finally, ADHD was diagnosed in 12% of the sample. Information about physical conditions has not been scored in this study.

Genetic abnormalities were not checked in 35.5% (47 patients) of this sample as genetic testing has not been standard procedure in the actual unit until the last two years. Of the 86 patients checked, 54 had no genetic deviation. The most common finding was 22q11.2 deletion syndrome, in 8 patients. One patient had Down’s syndrome, 2 patients had gender abnormalities and 21 had various genetic abnormalities.

As mentioned above, the outpatients were basically referred for diagnostic assessment and therefore information about treatment is sparse. Results concerning treatment approaches, waiting time, admission time, and follow up, are therefore presented and discussed separately for inpatients and outpatients (see Table 2).

Table 2. Patient characteristics, treatment approaches, and times of waiting, stay, and follow up.

Variables	Inpatients N = 106	Outpatients N = 27
Referred from	Adult psychiatry 46.2, Adult habilitation 36.8%, Child psych 3.8%, Child habilitation 11.3%	Adult psychiatry 48.1%, Adult habilitation 29.6%, Child psych 11.1%, Child habilitation 11.1%
Legal status admission	Voluntary 61.4% / Involuntary 38.6%	Not scored
Legal status discharge	Voluntary care at discharge 81.1% / involuntary 18.9%	Not scored
Gender	Women 49.1%. Men 50.9%	Women 48.2%. Men 51.8%
ID level	None 17%, Mild 50.0%, Moderate 17.9%, Severe 11.3%, Profound 1.9%, Not specified 7.5%	None 25.9%, Mild 33.3%, Moderate 14.8%, Severe 22.2%, Profound 0%, Not specified 3.7%.
Autism Total	46.2%	51.9%
Autism N = 106/27	Childhood 24.5%, Asperger 7.5%, Atypical 9.4%, Other 4.7%	Childhood 22.2%, Asperger 11.1%, Atypical 18.5%, Other 0%.
Psychiatric diagnoses, number	Zero 15.1%, One 45.3%, Two 34.0%, Three 5.7%	Zero 22.2%, One 77.8%, Two 18.5%, Three 0%
Psychiatric diagnoses	Schizophrenia 32.1%, Bipolar 7.5%, Depression 17.9%, Anxiety 16.0%, OCD 9.5%, PTSD 12.3%, PD 15.1%, ADHD 14.2%.	Schizophrenia 22.2%, Bipolar 18.5%, Depression 7.4%, Anxiety 14.8%, OCD 3.7%, PTSD 14.8%, PD 11.1%, ADHD 3.7%.
Genetic abnormality	No 36.8%, Yes 27.4%, No information 35.8%.	No 55.6%, Yes 11.1%, No information 33.3%
Seclusion	50.9%	Not scored
Medicationa	Antipsychotic 52.8%, Mood stabilizer 44.8%, Anxiolytics 42.5%, Antidepressant 28.7%	Scored for 9 out of 27 patients only
Psychotherapy	78.3%	Not scored
Protection	45.3%	Not scored
Validation	86.9%	Not scored
Task mastering	64.2%	Not scored
Activities	88.7%	Not scored
Waiting time	6.1 months	2.3 months
Length of stay	9.1 months	9.3 months
Follow up	11.2 months	Not scored

Note: ID = intellectual disability, OCD = Obsessive Compulsive Disorder, PTSD = Post Traumatic Stress Disorder, ADHD =Attention Deficit Hyperactivity Disorder.

^aPercentage of inpatients using medication = 87.

Legal status was scored for the inpatients only. On admission, 61.4% were admitted voluntarily. Upon discharge the percentage of voluntarily care increased to 81.1%. The proportion of involuntarily admissions was different when comparing inpatients with outpatients. This is because all patients in the outpatient unit were admitted voluntarily. The patients may, however, be followed up involuntarily by other psychiatric institutions in accordance with the Norwegian Mental Health Act while being provided with services in the SPS-ID.

Altogether 82.1% (87 patients) of inpatients were medicated. Of the 87 inpatients using psychotropic medication, 6 used two different drugs, 24 used three different drugs and 12 used four different drugs. The most frequently used medication was antipsychotics, which were used by 46 of those using psychotropic drugs. About half of these patients used two different antipsychotics, while 5 patients used three. The second most used drug was mood stabilisers, which were used by a total of 39 inpatients. Seven inpatients used two different mood stabilisers. The third most used drug was anxiolytics, used by 37 patients, in every case combined with other psychotropic medication. Antidepressants were used by 25 patients. Five patients used antidepressants as a sole solution. Other medication used was sleeping medication (12 patients) and ADHD medication (3 patients).

Beside medication, interventions included seclusion and protection, and psychosocial interventions. Seclusion is situated in a sheltered part of the SPS-ID including bedroom, living room, bathroom, kitchen, and available staff around the clock. Most of the secluded patients in the SPS-ID have 2:1-staffing. Protection is provided for patients who are acting out; against stimuli, self-harm, and aggression. Seclusion was used for 50.9% and protection for 45.3%.

Psychosocial treatment encompasses both milieu therapy and psychotherapy. Regarding milieu therapy, the core factors validation (acceptance and acknowledgment), task mastering, and activity were scored. These categories were scored if referred to in the case files.

Validation acts were specifically mentioned in 86.9% of the case files. Task mastering was mentioned in 64.2% of the case files. Systematic participation in activities was mentioned in 88.7%. Psychotherapy was provided for 83 of the 106 inpatients (78.3%). Psychotherapy encompasses supportive psychotherapy, psycho-education, and cognitive therapy, provided by a psychologist, a psychiatrist, or by the nurse practitioner.

The waiting time for the inpatients from referral until admission was 6.1 (SD = 2.1) months. The average length of stay was 9.1 months (SD = 8.3) for the inpatients. These patients had an additional average of 11.2 months’ follow up (SD = 9.5), giving a total average service length of 20.3 months, ranging from 2 to 67 months (SD = 10.3).

Information about medication for the outpatients was available for 9 out of 27 (33.3%) patients. All nine patients received psychotropic medication. For the remaining outpatients, exact information about psychotropic medication was not registered. For the nine patients, two used five drugs concurrently, one used four drugs concurrently, three used two drugs concurrently while three used one drug only. Seven out of nine patients used antipsychotics, six used mood stabilizers, four used anxiolytics and one used antidepressants. There was limited information about psychosocial interventions for outpatients. Such information was obtained for one patient only; this patient received psychotherapy. The waiting time for the outpatients was 2.3 months (SD 0.9).

The average admission length was 9.3 months (SD = 6.5) for the outpatients.

Discussion

The main findings in this study are that most of the patients have complex mental health conditions and that the time frame from referral to the point when the specialized unit terminates follow up is around 2 years for the inpatients and around 1 year for the outpatients. As 93% of the invited patients agreed to participate, the present sample might be regarded as being representative of patients with intellectual disability and impaired mental health referred to the specialized psychiatric services in Norway.

Most of the patients were referred by adult services; around 10% were referred by child services. The actual unit admits patients from the 16 years of age, although it is an adult unit. This is because severe mental illness tends to onset earlier in people with ID (Friedlander and Donnelly 2004).

Around two out of three patients admitted had mild to moderate intellectual disabilities and this finding was expected as it reflects studies of cognitive level in representative samples of persons with intellectual disabilities (Leonard et al. 2003). The patients with no ID diagnosis had a diagnosis within the autism spectrum. Usually patients with IQ within the neurotypical range are referred to general psychiatric services in Norway, also when they have an ASD diagnosis. However, during the last decade, patients with IQs in the normal range have been admitted in the actual department, having ASD (mostly Asperger Syndrome) and adaptive functioning equivalent to mild ID. These patients are referred to specialized psychiatry as general psychiatry experience that they do not have satisfactory services for these particular patients.

There was an overrepresentation of patients with autism. The prevalence of autism among adults with known ID is estimated to be between 20% and 33% (Emerson and Baines 2010). In this sample about half of the patients were diagnosed with autism. This may underscore the suggestion that people with autism more often develop mental illnesses (Bakken et al. 2010). It is found that persons with ASD tend to present with atypical symptoms when they develop mental illness, such as behavior problems, severe social withdrawal and idiosyncratic signs of anxiety (Bakken et al. 2016). Aggression and self-harm may result in admission in psychiatric services, which is a possible explanation why persons with ASD is highly overrepresented in this sample.

The genetic abnormalities were found in about four out of ten patients checked. This is a reasonable number as genetic factors are strongly associated as risks for ID (Vissers et al. 2016). Also that 22q11.2 deletion syndrome was the most commonly found genetic syndrome is not surprising, as there is a very high prevalence of mental illness associated with this syndrome (McDonald-McGinn et al. 2016). Only one patient had Down syndrome, which at first glance may appear as surprising, but a previous representative study of mental health in ID found that persons with Down syndrome were underrepresented regarded prevalence of mental illness (Smiley et al. 2007).

Of the psychiatric diagnoses given during assessment in the specialized unit, schizophrenia was the most commonly used diagnosis, in about one in three patients. The second most used diagnosis was anxiety, followed by depression, PTSD, ADHD, bipolar disorder, and OCD. No psychiatric disorders were found in 22 patients. This may be explained by those patients displaying severe aberrant behavior, which has been found to be associated with mental illness (Myrbakk and von Tetzchner 2008). The remaining patients, more than four out of five, were diagnosed with mental illnesses. About one in three in this group was diagnosed with two or three co-morbid conditions. This might be explained by the fact that the actual psychiatric unit is regional and accepts patients that have already been assessed by the general psychiatric services or the habilitation services, and have been referred further because of complex conditions.

There were no striking differences between the inpatients and the outpatients, except for the waiting time, which was much lower for the latter. This might be explained by the fact that the outpatients were in care all along and therefore the team from the SPS-ID could start assessment and at the same time adjust their efforts for each and every patient among other tasks as counseling, teaching, etc. For both inpatients and outpatients psychoses and bipolar disorder accounted for about 40%. According to missing information about the outpatients, and the fact that outpatients do not have any follow up, the following discussion is about the inpatients.

The total length of intervention was quite long for the inpatients, compared to general psychiatric services in Norway. According to Norwegian law, persons with psychosis who are violating themselves or others may be admitted involuntarily in acute psychiatric wards within general psychiatric services. However, patients who are referred to specialized psychiatric services (for patients with ID, with severe eating disorders, etc.), which mostly are situated in the four health regions of Norway, tend to wait for months. Unfortunately, data on waiting time in the Norwegian health system is not available for each of the specialized services. Additionally, the general psychiatric services in Norway have over the last 30 years transformed to some extent from being predominantly inpatient services, to being predominantly outpatient services. Clinical experience reinforces the fact that patients with ID tend to undergo extensive assessment and treatment courses within the psychiatric services; up to five – seven years for patients with ID, autism and concurrent schizophrenia. The need for specialized psychiatric services may be because patients with ID do not master treatment on their own, but need a therapist to assist them (Bakken et al. 2014a, Bakken and Sageng 2016). Many of the patients arriving at the inpatient units in the SPS-ID have been mentally ill for many years. Some of them have had up to 30 – 40 admissions in psychiatric acute wards, which in many cases have broken the patient’s and the families’ confidence in the health system. In those cases, new relationships must be built, which is time consuming work. In the SPS-ID, a thorough interdisciplinary assessment is conducted. Medication will in some cases endure caused by side effects and eventually medication change. Another reason for the extensive courses may be that in order to obtain lasting improved mental health for patients, cooperation between specialist services and community services ought to be continued after discharge from the mental health services. Such follow up will typically encompass cooperation in mental health issues between psychiatric services and community services. More than 15 years of clinical experience in the SPS-ID point at follow up after discharge as important for patient outcome. However, literature about follow-up for patients with ID barely exists. For patients in general psychiatry, it is commonly accepted that follow-up is crucial for a positive long term outcome (McGorry et al. 2005; van Os and Kapur 2009). Among the 106 inpatients, there were only three re-admissions. The small number of re-admissions may be explained by the long total intervention.

For the inpatients, the most frequently used intervention was milieu therapy; provided all inpatients. The second most used intervention was medication. Thus, most patients received a combination of psychotropic medication and psychosocial interventions. Combination therapy is recommended both for patients with ID (Bakken et al. 2016) and for patients in the general population (van Os and Kapur 2009). Most of the inpatients were also provided psychotherapy. In the SPS-ID, no fixed manual is used as the patients have multiple challenges and hence psychotherapeutic sessions must be tailored for each patient (Bakken et al. 2017). Treatment will be discussed in more detail in a succeeding article.

The present study has its limitations. The limitations mainly relate to the absence of reliable outcome measures, systematic user satisfaction measures, as well as a lack of information about outpatients and about physical conditions that have not been scored in this study.

In this present paper, we did not investigate referral reason, as all the patients in the SPS-ID are referred for diagnostic assessment. However, patients are referred for more than one reason, such as medication and psychosocial treatment strategies additional to assessment. In further collection of data, reason for referral ought to be included. We did not investigate specific symptom load at admission, hence we could not compare inpatients with outpatients regarding why some were referred for inpatient stay, and some were referred for diagnostic assessment only. During the seven years in the SPS-ID covered by this study, no systematic evaluation of the services has been conducted.

The actual unit is now planning to establish a medical quality register. This will require both reliable outcome measures and measures of user satisfaction. Outcome measures in general psychiatry in Norway are usually measured by the Global Assessment of Functioning scale (GAF). However, it has been found that the GAF is unfeasible and unreliable when used for patients with ID (Olivier et al. 2003). Useful measures could be the Aberrant Behaviour Checklist (Aman and Singh 1994) and/or the Psychopathology in Autism Checklist (Helverschou et al. 2009). Even though the research is limited, there is some evidence to suggest that specialized psychiatry is a feasible intervention for patients with complex conditions, including ID, autism, and mental health problems (Nawab and Findlay 2008; Lunsky et al. 2010; Siegel et al. 2014).

Patient satisfaction may be hard to measure among patients with ID (Bakken et al. 2012). The actual unit has tried different self-made inventories but has not succeeded in obtaining reliable information from patients. A third-party inventory, for the most part close family, will be used to obtain information about patient satisfaction in the future. Also, information about other institutions with responsibility for treatment ought to be covered in a medical quality register.

Naturally, the results raise some interesting questions. For example, is there compliance between psychiatric diagnosis and interventions, and are there differences between patients with and without autism spectrum diagnoses? It would be interesting to identify what characterized the patients who did not suffer from mental illness. These questions and more will be answered in future articles derived from the data collected for the present study.

Conclusions

Although general psychiatric services in Norway have over the last 30 years transformed from being predominantly inpatient services, to being predominantly outpatient services, services for patients with ID appear to still be reliant on inpatient units for at least a proportion of their patients. More research is needed to find out why this is.

Regarding planning of services, the long waiting list indicates that assessment and treatment of mental health issues in ID need more attention from the health authorities. From general psychiatry, it is known that early intervention in essential for the best possible prognosis.

The few re-admissions confirm that patients with ID and mental illness need longer time in the mental health services compared to neurotypical patients. A number of patients in this study had frequent admissions in psychiatric emergency departments before being admitted in the SPID. For patients with severe, complex and long standing conditions, inpatient stay has the advantage of tailoring of milieu therapy, which can be continued in community care when the patient is discharged.

Disclosure statement

No potential conflict of interest was reported by the authors.