| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
| Psychiatric Bulletin | Advances in Psychiatric Treatment | All RCPsych Journals |
|
|
|
||||||||||
|
||||||||||||
Young People’s Unit, Royal Edinburgh Hospital, Edinburgh
Gartnavel Royal Hospital, Glasgow
Hairmyres Hospital, East Kilbride
South Glasgow Adolescent and Family Psychiatry Service, Glasgow
School of Molecular and Clinical Medicine, University of Edinburgh
Young People’s Unit, Royal Edinburgh Hospital, Edinburgh, UK
Correspondence: Dr Leonie Boeing, Young People’s Unit, Royal Edinburgh Hospital, Tipperlinn Road, Edinburgh EH10 5HF, UK. Email: leonie.boeing{at}lpct.scot.nhs.uk
Declaration of interest None. Funding detailed in Acknowledgements.
 |
ABSTRACT |
|---|
 TOP ABSTRACT INTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
|---|
Aims To examine prevalence and the cross-sectional disability, needs and service provision for adolescent-onset psychosis in areas of central Scotland with a total population of 1.75 million.
Method We identified and contacted 103 young people using an opt-out research design. Fifty-three participants and their carers and keyworkers were interviewed using a modified version of the Cardinal Needs Schedule.
Results The 3-year prevalence was 5.9 per 100 000 general population. Twenty-one (20%) adolescents were not in contact with mental health services; 80% of first admissions were to adult acute psychiatric wards. Those interviewed had high levels of morbidity: 29 (55%) had serious to pervasive impairment of functioning; there were relatively high levels of side-effects, negative symptoms, anxiety, occupational, friendship and family difficulties. Care provision was better for‘clinical’than for‘social’domains; 20% had five or more unmet needs; 17% had at least one intractable problem.
Conclusions This low-prevalence disorder requires an assertive multi-agency approach in the context of a national planning framework.
|
|
INTRODUCTION |
|---|
|
TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
|---|
|
|
METHOD |
|---|
|
TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
|---|
Study area and population
The investigation was carried out in the socio-economically diverse areas
of Edinburgh, the Lothians, Lanarkshire and south Glasgow, covering a
population in 2001 of 1 750 000, about a third of the population of Scotland.
Approximately 200 000 adolescents were at risk of having psychosis during the
study period 1 September 1998 to 31 August 2001
(Compton, 2001). Young people
were eligible if at any time prior to their 18th birthday they had been in
contact with mental health services for a psychotic illness, including those
who had subsequently lost contact with services. Those with an ICD–10
diagnosis of schizophrenia, schizotypal and delusional disorders, and all
psychosis subgroups from mood disorders and disorders due to psychoactive
substance misuse were included (World
Health Organization, 1992). Those with psychosis of organic
aetiology were excluded, as were those with comorbid learning disability,
because many of the instruments had not been validated in this population.
Identification of participants
Potential candidates for the study were identified from three separate
sources: routinely collected admission and discharge data from the Information
and Statistics Division of the Scottish Executive; local hospital case
registers; and clinicians in child and adolescent and adult mental health
services. Any suggestion of psychosis led to further consideration for
inclusion. Case records were examined by one of two clinical researchers, each
of whom had several years’ experience working with young people with
psychosis, and ICD–10 diagnoses based on case-note review were generated
using the Operational Criteria Checklist (OPCRIT;
Craddock et al,
1996), a valid and reliable research instrument that offers an
efficient alternative to more lengthy diagnostic procedures. Interrater
reliability ratings for this study were very good across 18 sets of case notes
(
=0.83 for diagnostic categories; =1.0 for psychosis v.
no psychosis). Information relating to first service contacts,
socio-demographic factors and substance misuse were also taken from the case
notes. In two cases a clear history of psychosis was evident from information
provided by the clinician identifying the cases, but access to case notes to
allow formal OPCRIT confirmation of this was denied by the responsible medical
officers. These two cases were included in the prevalence figure but excluded
from subsequent analysis.
Recruitment for interview
Attempts were made to approach all suitable candidates for interview unless
vetoed by key healthcare professionals. Ethical permission was obtained for an
opt-out research design as a low response rate was anticipated. This allowed
the research team to approach the young people directly (by letter, telephone
or home visit) to ascertain whether they wished to take part in the study if
no reply to the initial contact letter had been received within 2 weeks.
Interviews were conducted by either of the two researchers, except in the few
cases where there were safety concerns. Eight joint interviews were performed
for the purposes of calculating interrater reliability (>0.7 for
clinical rating scales, with one exception: for anxiety, =0.5). The
ratings of cardinal problems and needs were made by the primary researcher
(L.B.) with consensus decisions with V.M. and A.P. in several cases where
there was uncertainty.
Interview procedure
The Cardinal Needs Schedule (Marshall
et al, 1995), a modified version of the Medical Research
Council Needs Assessment Schedule, was specifically adapted for this study.
This enabled a detailed age-appropriate assessment of current disability and
need in adolescents with psychotic illnesses using interview information from
participants, their carers and keyworkers. Keyworkers were the professionals
currently most closely involved in the provision of care for the participant,
or the most recently involved professional if the young person was no longer
in contact with services. The validated research outcome measures listed below
were incorporated in the schedule to determine whether problems were present
in 11 clinical and 10 social domains of functioning (see
Table 4):
|
According to domain-specific criteria, an assessment was made as to whether an ‘objective problem’ was present. These became ‘cardinal problems’ (a problem requiring action) if one or more of the following criteria were met:
Criteria for deciding on the presence or absence of a cardinal problem are not applied uniformly for each domain of functioning. For example, people who could not use community facilities such as shops or public transport would not have a cardinal problem in this area if they did not want help. On the other hand, dangerous or destructive behaviour becomes a cardinal problem on the basis of severity, so that people who are behaving dangerously should receive an intervention even if they would not choose it. Each cardinal problem is examined with respect to the interventions that have already been offered and the current circumstances of the individual young person (Fig. 1). The cardinal problem is then rated as one of the following:
|
The Global Assessment of Functioning, an integral part of the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, was used to supplement information about overall levels of functioning (American Psychiatric Association, 1994).
|
|
RESULTS |
|---|
|
TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
|---|
History of mental health problems and service contacts
Details of the onset of psychosis and contact with the mental health
services are shown in Table 1
for the 101 people for whom we had access to case notes. Twenty-seven
individuals had a history of harmful use of alcohol, and 47 harmful illicit
drug use as rated from case notes, including 26 who misused both drugs and
alcohol. Since becoming unwell 86 had received in-patient care; only 20% of
first admissions were to specialist adolescent facilities. At the time of
follow-up 6 of the total group were in secure psychiatric units, 2 were in
prison and 14 were detained under the Mental Health (Scotland) Act 1984.
|
Recruitment for interview
Consent to participate in the interview could not be sought from 25 (24%)
of the 103 identified young people for the following reasons: their mental
health (n=8) or physical health (n=1) was too poor; the
person had left Scotland (n=5); permission to examine case records
and to approach the person was denied (n=2); there was exceptional
delay in obtaining permission from the general practitioner to approach the
young person (n=1); we could not locate the person despite extensive
searches including contacting previous social workers or general practitioners
and visiting the last known address (n=5); when finally located (name
on house door, spoke to other resident in household, etc.) the person could
not be met to discuss the study, despite at least five attempts
(n=3). Of the remaining 78 young people, 53 gave permission for
interview contact. In 44 cases both the young person and the carer were
interviewed, in 5 cases only the young person, and in 4 cases only the carer
was interviewed. Some additional information was provided by three keyworkers
if the young person was an in-patient and there was no carer available. Carers
were invariably parents.
There was no statistically significant difference between those from whom
consent for interview could not be sought (n=25) and those who were
available in regard to type of service currently received (child and
adolescent v. adult), current status under the Mental Health
(Scotland) Act 1984, gender, ethnicity, substance misuse from case notes,
length of follow-up and diagnostic grouping. Those for whom consent could not
be sought were significantly more likely to be out of contact with the mental
health service (Pearson’s 
2=4.96, P=0.04) and
have a shorter duration of untreated psychosis (Kruskal–Wallis
X=4.29, P=0.04). There was no significant difference between
those who gave consent (n=53) and those who did not (n=25)
as regards current status under the Mental Health (Scotland) Act 1984, whether
currently in contact with the mental health services, type of service
currently received, gender, ethnicity, substance misuse, length of follow-up
and diagnostic grouping. Those who did consent to interview had a
significantly longer duration of untreated psychosis (Kruskal–Wallis
X=4.36, P=0.04).
Characteristics
Socio-demographic features of interviewees
Table 2 shows the current
socio-demographic circumstances of the participants interviewed
(n=53). Thirty-eight (78%) of the 49 participants aged 16 years or
over were claiming benefits: disability living allowance (n=23),
incapacity benefit (n=12), severe disability allowance
(n=3), income support (n=16) and other benefits
(n=3).
|
Clinical features
Clinical findings from the outcome scales are detailed in
Table 3. Using the Friendship
Questionnaire, 40 (82%) reported a moderate to severe lack of friendships,
including 7 who had ‘no friends’. Thirty-five (71%) participants
said they were ‘not very happy’ or ‘unhappy’ with
their friendships. Twenty-three (43%) had ‘unhealthy’ family
functioning (rating >200 on the General Functioning Scale of the Family
Assessment Device).
|
Medication and side-effects
Forty-two (86%) of those interviewed were currently taking medication for
their mental health: 32 were taking newer antipsychotics – most commonly
olanzapine (n=9), clozapine (n=8), quetiapine (n=5)
and risperidone (n=5) – and 10 were taking older
antipsychotics, including chlorpromazine (n=5) and depot preparations
(n=4). Six participants were taking antidepressants, 10 mood
stabilisers and 4 benzodiazepines. Twenty-seven (55%) were taking more than
one psychotropic medication, of whom 9 were taking oral medication to
counteract side-effects (e.g. procyclidine, hyoscine, thyroxine and
lactulose). Thirty-six (86%) of those taking medication reported current drug
side-effects; 18 (43%) reported either at least one marked side-effect or more
than four mild side-effects. Figure
2 shows the side-effects most commonly experienced.
|
|
Across all the domains the mean number of unmet needs was 2.3 (range 0–8, 95% CI 1.6–2.9); a fifth of participants had five or more unmet needs. Thirty-one per cent had had all their needs met. Within the clinical domains, relatively few unmet needs were observed for psychotic or anxiety/mood symptoms, dangerous/destructive behaviour, socially inappropriate behaviour and side-effects. Four participants had unmet needs in regard to underactivity (reflecting negative symptoms) and physical problems, and six had unmet needs for illicit drug use and alcohol misuse. However, psychoeducational needs (knowledge about mental health and treatment issues) were unmet for 18 (33%) participants. In comparison, needs associated with social domains were quite frequently unmet: for supporting family relationships (n=16), keeping occupied (n=11) and managing money/own affairs (n=10).
|
|
DISCUSSION |
|---|
|
TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
|---|
Prevalence
We studied a third of the total population of Scotland, who received
services from different NHS trusts, education and social work departments. The
3-year prevalence of early-onset psychosis of approximately 50 per 100 000 of
the at-risk population indicates a rare disorder, with only a small number of
cases occurring in each local area. Differences in methodology and inclusion
criteria make comparison with other studies problematic; however, Gillberg
et al (1986) found a
mean yearly prevalence for 13- to 19-year-olds hospitalised with psychosis of
7.7 per 10 000. In a Scottish sample in the 1980s the annual incidence of
schizophrenia in the age-group 15–19 years was found to be 1.0 in males
and 0.5 in females per 10 000 (Takei
et al, 1996).
Needs assessment
Using a modified version of the Cardinal Needs Schedule we were able to
make a detailed and age-appropriate assessment of patients’ problems and
the work being done to address these. Possible interventions were selected
from the evidence base and good practice guidelines for care
(Department of Health, 2000;
American Association of Child and
Adolescent Psychiatry, 2001;
Clinical Standards Board for Scotland,
2001) rather than from the services available in each local area.
High levels of suspended needs represent considerable levels of appropriate
input, and effective interventions may mean that previous difficulties are no
longer rated as current problems; underrecording of the services provided is
therefore inevitable. However, for a minority of the sample we found serious
failures of care, with unmet need identified in several domains. There was
greater unmet need in regard to psychological and social components of
disability compared with ‘medical’ aspects. Murray et al
(1996) found similar results
using the Cardinal Needs Schedule in a community prevalence study of people
aged 18–65 years with psychosis, as did Macpherson et al
(2003) in a similar adult
sample assessed using the Camberwell Assessment of Needs Short Appraisal
Schedule. This is in spite of the well-established contribution of
psychoeducation and psychological treatment methods
(Birchwood et al,
2000; American Association of
Child and Adolescent Psychiatry, 2001) and government
recommendations regarding access to employment and education for those with
disability (Department of Health,
2000; National Institute for
Clinical Excellence, 2002; Special Educational Needs and
Disability Act 2001; Great Britain
Parliament House of Commons Work and Pensions Committee, 2003). We
found high levels of difficulties with family functioning: 43% v. 19%
in a non-clinical population measured using the General Functioning Scale of
the Family Assessment Device (Byles et
al, 1988). It is disappointing therefore to note the
particularly high levels of unmet need in the domain of family relationships,
given the relatively robust evidence base for family interventions early in
the course of psychotic illnesses (Pilling
et al, 2002). Also, many young people and their carers
and keyworkers described frustration at the lack of resources for keeping
young people with severe mental illness occupied during the day.
Access to in-patient care
This study has confirmed the widely held clinical impression that there is
an important gap in adolescent in-patient care provision; 80% of first
admissions were to adult wards, almost identical to the Swedish levels of 83%
in the 1970s (Gillberg et al,
1986). Although methodological differences make direct comparison
problematic, it is noteworthy that the National In-patient Child and
Adolescent Psychiatry Study
(O’Herlihy et al,
2001) found that 4.6 per 100 000 persons aged 18 years and under
from all diagnostic groups were admitted to adult general psychiatry wards in
England and Wales; the most common reasons for such admissions were
non-availability of an appropriate facility or the appropriate facility either
being full or not accepting the patient. Adult psychiatric units are
unacceptable for the care of young adolescents, their admittance to such units
being at odds with good practice
(Department of Health, 1998;
Mental Welfare Commission for Scotland,
2001; Mental Health (Care and Treatment) (Scotland) Act 2003) and
involving risks to health and safety because of current staffing levels and
patient mix (Royal College of
Psychiatrists, 1999). Transitional arrangements between
age-demarcated services are required to provide age-appropriate care.
Medication and side-effects
Although most young people in our sample were being treated with newer
antipsychotics in accordance with treatment guidelines, there were high levels
of side-effects. This supports the importance of baseline assessments prior to
initiating treatment and further study to refine the use of antipsychotic
medications in children and adolescents
(Bryden et al,
2001).
Recruitment and engagement
The response rate of 53% makes these results tentative; however, the
opt-out research design allowed inclusion of some participants no longer in
contact with the mental health services and those who were more difficult to
engage, making the findings more representative of a complete clinical sample.
The difficulties experienced in recruitment for the interview phase of the
study, despite the active role of interagency workers known to the young
people concerned, give a valuable insight into the need for assertive
follow-up focusing on working alliances with service users and their families
(Rose, 2001). This is
resource-intensive but must be sustained in spite of competing demands to
assist large numbers of patients with less severe conditions
(Murray et al, 1996).
A prospective study of an incidence sample, although expensive, would provide
valuable information on the continuity and disruption of service
provision.
Implications of the study
Our findings set challenges for both service planners and providers who
have responsibility for the professional care for this vulnerable group. This
study shows that the reality of community care for many young people with
psychotic illnesses falls short of guidelines for standards of provision
(Department of Health, 1998,
2000;
Clinical Standards Board for Scotland,
2001; National Institute for
Clinical Excellence, 2002;
Social Exclusion Unit, 2004).
There is also substantial underprovision of adequate in-patient facilities for
this group of patients, including secure beds. Routine systematic needs
assessment would inform service planning and assist with individual care
plans. The low prevalence and complexity of needs support recommendations for
a national planning framework integrating care across primary care, child and
adolescent and adult mental health services, social work, education and the
voluntary sector.
|
|
ACKNOWLEDGMENTS |
|---|
|
TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
|---|
|
|
REFERENCES |
|---|
|
TOPABSTRACTINTRODUCTIONMETHODRESULTSDISCUSSIONACKNOWLEDGMENTSREFERENCES |
|---|
American Association of Child and Adolescent Psychiatry (2001) Practice parameters for the assessment and treatment of children and adolescents with schizophrenia. Journal of the American Academy of Child and Adolescent Psychiatry, 40 (suppl. 7), 4S –23S.[CrossRef][Medline]
American Psychiatric Association (1994) Diagnostic and Statistical Manual of Mental Disorders (4th edn) (DSM–IV). APA.
Andreasen, N. C. (1989) The Scale for the Assessment of Negative Symptoms (SANS): conceptual and theoretical foundations. British Journal of Psychiatry, 155 (suppl. 7), 49 –52.
Birchwood, M., Fowler, D. & Jackson, C. (2000) Early Intervention in Psychosis: A Guide to Concepts, Evidence and Interventions. John Wiley & Sons.
Bryden, K. E., Carrey, N. J. & Kutcher, S. P. (2001) Update and recommendations for the use of antipsychotics in early onset psychoses. Journal of Child and Adolescent Psychopharmacology, 11, 113 –130.[CrossRef][Medline]
Byles, J., Byrne, C., Boyle, M. H., et al (1988) Ontario Child Health Study: reliability and validity of the General Functioning Scale of the McMaster Family Assessment Device. Family Process, 27, 97 –104.[CrossRef][Medline]
Clinical Standards Board for Scotland (2001) Clinical Standards for the Treatment of Schizophrenia. CSBS.
Compton, G. (2001) 1999 Small Area Population Estimates Scotland (Occasional paper no. 3). General Register Office for Scotland.
Craddock, M., Asherson, P., Owen, M. J., et al
(1996) Concurrent validity of the OPCRIT diagnostic system.
Comparison of OPCRIT diagnoses with consensus best-estimate lifetime
diagnoses. British Journal of Psychiatry,
169, 58
–63.
Department of Health (1998) Modernising Health and Social Services: National Priorities Guidance 1999/00–2001/02. Department of Health.
Department of Health (2000) The NHS Plan. The Mental Health Implementation Guide. Department of Health.
Drake, R. E., Osher, F. C., Noordsy, D. L., et al (1990) Diagnosis of alcohol use disorders in schizophrenia. Schizophrenia Bulletin, 16, 57 –67.[Medline]
General Register Office for Scotland (2000) Crown copyright .
Gillberg, C., Wahlstrom, J., Forsman, A., et al (1986) Teenage psychosis – epidemiology, classification and reduced optimality in the pre-, peri- and neonatal periods. Journal of Child Psychology and Psychiatry, 27, 87 –98.[Medline]
Great Britain Parliament House of Commons Work and Pensions Committee (2003) Employment for All: Interim Report. HC 401. Fourth Report of Session 2002–2003. Vol. 1, Report of Proceedings of the Committee. TSO (The Stationery Office).
Hambrecht, M. & Hafner, H. (2000) Cannabis, vulnerability, and the onset of schizophrenia: an epidemiological perspective. Australian and New Zealand Journal of Psychiatry, 34, 468 –475.[CrossRef][Medline]
Hollis, C. (2000) Adult outcomes of child and
adolescent-onset schizophrenia: diagnostic stability and predictive validity.
American Journal of Psychiatry,
157, 1652
–1659.
Hollis, C. (2003) Developmental precursors of
child- and adolescent-onset schizophrenia and affective psychoses: diagnostic
specificity and continuity with symptom dimensions. British Journal
of Psychiatry, 182, 37
–44.
Krawiecka, M., Goldberg, D. & Vaughan, M. (1977) A standardised psychiatric assessment scale for rating chronic psychotic patients. Acta Psychiatrica Scandinavica, 55, 299 –308.[Medline]
Macpherson, R., Varah, M., Summerfield, L., et al (2003) Staff and patient assessments of need in an epidemiologically representative sample of patients with psychosis – staff and patient assessments of need. Social Psychiatry and Psychiatric Epidemiology, 38, 662 –667.[CrossRef][Medline]
Marshall, M., Hogg, L., Lockwood, A., et al (1995) The cardinal needs schedule: a modified version of the MRC needs for care schedule. Psychological Medicine, 25, 605 –617.[Medline]
Meltzer, H., Gatard, R., Goodman, R., et al (2000) The Mental Health of Children and Adolescents in Great Britain.Office for National Statistics.
Mental Health Foundation (2001) Is Anybody There? Mental Health Foundation Report on Mental Health and Friendship. MHF.
Mental Welfare Commission for Scotland (2001) Annual Report 2000–2001. MWC.
Murray, V., Walker, H. W., Mitchell, C., et al
(1996) Needs for care from a demand led community psychiatric
service: a study of patients with major mental illness.
BMJ, 312, 1582
–1586.
National Institute for Clinical Excellence (2002) Schizophrenia: Core Interventions in the Treatment and Management of Schizophrenia in Primary and Secondary Care. NICE.
Nicolson, R., Lenane, M., Singaracharlu, S., et al
(2000) Premorbid speech and language impairments in
childhood-onset schizophrenia: association with risk factors.
American Journal of Psychiatry,
157, 794
–800.
O’Herlihy, A., Worrall, A., Banerjee, S., et al (2001) National In-Patient Child and Adolescent Psychiatry Study (NICAPS). Royal College of Psychiatrists’ Research Unit.
Pilling, S., Bebbington, P., Kuipers, E., et al (2002) Psychological treatments in schizophrenia: 1. Meta-analysis of family intervention and cognitive behavioural therapy. Psychological Medicine, 32, 763 –782.[CrossRef][Medline]
Rabinowitz, J., Bromet, E. J. & Davidson, M. (2003) Are patients enrolled in first episode psychosis drug trials representative of patients treated in routine clinical practice? Schizophrenia Research, 61, 149 –155.[CrossRef][Medline]
Remschmidt, H. (2001) Schizophrenia in Children and Adolescents. Cambridge University Press.
Rose, D. (2001) User Voices: The Perspectives of Mental Health Service Users on Community and Hospital Care. Sainsbury Centre for Mental Health.
Royal College of Psychiatrists (1999) Guidance on Staffing of Child and Adolescent In-Patient Psychiatry Units (Council Report CR76). Royal College of Psychiatrists.
Social Exclusion Unit (2004) Mental Health and Social Exclusion.Office of the Deputy Prime Minister.
Takei, N., Lewis, G., Sham, P. C., et al (1996) Age period–cohort analysis of the incidence of schizophrenia in Scotland. Psychological Medicine, 26, 963 –973.[Medline]
Wistedt, B., Rasmussen, A., Pedersen, L., et al (1990) The development of an observer-scale for measuring social dysfunction and aggression. Pharmacopsychiatry, 23, 249 –252.[Medline]
World Health Organization (1992) Tenth Revision of the International Classification of Diseases and Related Health Problems (ICD–10). WHO.
Received for publication May 13, 2004. Revision received July 14, 2005. Accepted for publication July 22, 2005.
Related articles in BJP:
Read all eLetters
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| HOME | HELP | FEEDBACK | SUBSCRIPTIONS | ARCHIVE | SEARCH | TABLE OF CONTENTS |
| Psychiatric Bulletin | Advances in Psychiatric Treatment | All RCPsych Journals |
marked; 
mild.