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Removing Barriers to Treatment of First-Episode Psychotic Disorders

Derek J Scholten, Ashok K Malla, Ross MG Norman, Terry S McLean, Elizabeth M McIntosh, Chris L McDonald,, Michael Eliasziw, Kathy N Speechley

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Brief Communication

Removing Barriers to Treatment of First-Episode Psychotic Disorders

Derek J Scholten, BA (Hons), MSc1, Ashok K Malla, MBBS, FRCPC, MRCPsych2, Ross MG Norman, PhD, CPsych3, Terry S McLean, RN, BA, MEd4, Elizabeth M McIntosh, RN, BA5, Chris L McDonald, RN, BHSc(N)5, Michael Eliasziw, PhD6, Kathy N Speechley, PhD7

 

Objective: To describe changes aimed at removing barriers to appropriate and timely assessment and treatment of first-episode psychosis (FEP) and to present descriptive data regarding the potential impact of such changes on treated incidence, referral patterns, and treatment delay.

Methods: We collected demographic and clinical information, including duration of untreated psychosis (DUP), on 196 persons referred for an initial assessment over a 3-year period.

Results: The number of identified FEP cases increased and DUP decreased over the 3-year period. The data suggest a differentially greater reduction in DUP in cases referred from sources other than health care.

Conclusions: These preliminary results suggest that, when setting up programs for FEP, relatively simple changes designed to improve access may improve treated incidence and reduce treatment delays.

(Can J Psychiatry 2003:48: 561–565)

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Clinical Implications

  • We describe systemic changes in referral and assessment procedures implemented as part of an early-intervention program.

  • Preliminary data suggest that simple changes to referral and assessment systems may remove barriers and reduce treatment delays.

  • There are encouraging indications that referral sources not related to health care have the capacity to refer first-episode cases to appropriate treatment.

Limitations

  • The data presented are observational, may need to be extended over a longer period, and include a historical control.

  • Sources of referral data are limited to the source leading directly to admission to the program.

  • The nature of the design and small number of subjects may limit the generalizability of the results.


Key Words
: early intervention, psychosis, schizophrenia, duration of untreated psychosis, DUP, source of referral, barriers to care

Résumé : Éliminer les obstacles au traitement du premier épisode des troubles psychotiques

It has been suggested that treatment delay in psychotic disorders may be related to poor outcome (1–3). Some studies have failed to demonstrate such a relation (4,5); however, 2 recent reviews have concluded that, unresolved methodological differences among studies notwithstanding, sufficient evidence exists to support an inverse relation between treatment delay in first-episode psychotic (FEP) disorders and clinical outcome (6,7). It has also been proposed that improving FEP outcome involves providing phase-specific treatment in addition to reducing treatment delays (7,8).

A substantial proportion of individuals experiencing FEP disorder face long treatment delays, ranging from a few weeks up to an average of 1 to 2 years. Barriers to appropriate care, likely to exist at different levels of traditional referral and treatment systems, often result in multiple visits before an appropriate referral is made (9,10). More recent work at a specialized early-psychosis program in Canada has indicated that, on average, FEP patients make 2.3 (range, 1 to 6) help-seeking contacts following the onset of psychosis; most of these are made to emergency services and family physicians (11).

This paper outlines an approach to reducing barriers to appropriate treatment. It involves systemic changes implemented in an early-intervention clinical program in an urban setting. We present preliminary data on treated incidence, referral patterns, and treatment delay during the program’s first 3 years.

Methods

General Program Description
The Prevention and Early Intervention Program for Psychoses (PEPP-London) is a community-oriented, comprehensive, multidisciplinary assessment, treatment, and research program serving a predominantly urban population of approximately 400 000. A more detailed description of the program can be found at the Web site www.pepp.ca and has also been provided in previous publications (12,13).

Changes to Promote Early Access
Referral Policy. The program has an open referral policy, encouraging referrals not only from traditional sources, such as family physicians, emergency services, and inpatient units, but also directly from community social services, educational institutions, families, and individuals themselves. At the program’s inception, descriptive brochures were sent to all health-related referral sources in the catchment area, including community psychiatrists, psychologists, family physicians, and other community health care workers.

Prompt Response to Referrals. A quick-response system was put in place. This consisted of immediate contact by an experienced mental health nurse and an offer for initial assessment within 24 to 48 hours.

Inclusion Criteria
An initial assessment is offered to all outpatient referrals who live in the catchment area, are aged 16 to 50 years, have no outstanding criminal charges, and have not been treated with antipsychotic medication for more than 1 month (except for the program’s first year, when the maximum allowed time on antipsychotic medication was 3 months). The narrower criterion of 1 month reflects better the definition of “first-episode” and increases chances of a more homogeneous sample for assessing baseline symptom levels.

Data Collection and Analysis
We collected demographic and clinical data for all individuals who received an initial assessment between January 1, 1997, and December 31, 1999. We considered a referral to be a positive case if the person met DSM-IV (14) criteria for a psychotic disorder at the time of the initial assessment, confirmed later through a Structured Clinical Interview for DSM-IV (SCID) (15). For summary purposes, we categorized diagnoses into the following 4 groups, based on symptom and duration criteria: 1) schizophrenia or schizoaffective disorder; 2) schizophreniform disorder, psychosis not otherwise specified (NOS), delusional disorder, and brief psychotic disorder; 3) affective disorder with psychotic features; and 4) substance- induced psychosis. We grouped referral sources into 3 categories: 1) acute or hospital-based (that is, inpatient admissions and emergency room), 2) community-based health service (that is, family physicians, urgent consultation services, and community psychiatrists), and 3) other than health service (that is, family members, friends, educational institutions, community services, and self).

Details on assessment procedures and methods used to calculate duration of untreated psychosis (DUP) are available from previous publications (12,13). We applied a significance level of 5% to all statistical tests. Ethics approval for this study was provided by the Research Ethics Board for Health Sciences Research Involving Human Subjects of the University of Western Ontario.

Results

Case Definition and Treated Incidence
During the 3-year period, 196 individuals (131 male subjects and 65 female subjects) were assessed, 68 (35%) referred through the inpatient unit and 128 (65%) through the outpatient and community referral system (see Table 1). Positive cases identified were 72.9%, 73.3 %, and 62.0% in 1997, 1998, and 1999, respectively. Five subjects refused a full psychiatric assessment. Based on the number of positive cases identified, the annual age-specific (that is, age 16 to 50 years) treated incidence rates were 15.0, 26.6, and 23.2 per 100 000 in 1997, 1998, and 1999, respectively. As might be expected, not all positive cases were later confirmed to be suffering from a nonaffective psychotic disorder at follow-up. The frequency of other psychotic disorders was as follows: affective psychosis, 8 (4.4%); substance- induced psychosis, 4 (3.0%); and a psychotic disorder due to a medical condition, 1 (0.7%). Excluding these subjects from the sample, the annual age-specific (that is, age 16 to 50 years) treated incidence rates for nonaffective psychosis were 15.0, 23.2, and 20.3 per 100 000. Apart from statistically nonsignificant fluctuations, demographic patterns remained consistent across the 3-year period.

Table 1  Demographic and clinical characteristics 

 

1997 

1998 

1999 

All cases 

     

Total number assessed 

43 

75 

78 

Confirmed positive cases(male/female) 

31(20/11) 

55 (43/12) 

48 (36/12) 

Confirmed negative cases(male/female) 

11(5/6) 

18 (10/8) 

28 (14/14) 

Refused full assessment 

Positive cases only 

     

Median age (IQR) 

24.1 (19.9 to 30.4) 

21.7 (19.4 to 30.7) 

23.4 (19.5 to 30.7) 

Percent single or never married 

71.0 

74.5 

83.3 

Education 

     

Less than high school (%) 

41.9 

43.6 

34.0 

High school only (%) 

22.6 

34.6 

38.3 

More than high school (%) 

35.5 

21.8 

27.7 

Duration of untreated psychosis median (IQR) 

24.8 (10.8 to 47.6) 

23.8 (10.4 to 51.7) 

11.6 (4.47 to 31.4) 

Referral source 

     

Acute or hospital based (%) 

45.2 

40.0 

52.1 

Community-based health (%) 

45.2 

40.0 

33.3 

Other than health (%) 

9.6 

20.0 

14.6 

IQR = Interquartile range 

Diagnoses
An increase in the relative proportion of cases diagnosed with schizophreniform disorder, psychosis NOS, and brief reactive and substance-induced psychoses coincided with the increase in treated incidence in 1998 (see Figure 1). These increases appear to be associated with reduced proportions of those with a diagnosis of schizophrenia and schizoaffective disorder. The pattern in 1999, however, was similar to that seen in 1997. These differences in the relative proportion of diagnoses were not statistically significant.

Figure 1 Proportion of diagnostic subgroups over the 3-year period
scholtenfig1.JPG - 33284 Bytes

Treatment Delay
Data required to determine DUP were available for 126 of the 134 individuals identified with FEP. The other 8 individuals refused or withdrew from treatment prior to completion of the assessment. The overall median DUP was 19.4 weeks (interquartile range [IQR], 7.3 to 44.8). Table 1 shows median DUP levels for each of the 3 years. The changes in DUP over time, while substantial in 1999, failed to reach statistical significance.

Referral Source
Table 1 lists the relative proportion of positive cases arriving from each referral-source subgroup for each year. We examined changes in DUP over time according to the referral- source subgroups (Figure 2). The changes over time in the relative proportion of positive cases and median DUP according to referral source, while not statistically significant, suggested increased referrals and reduced DUP from referral sources other than health care.

Figure 2 Median DUP in weeks by referral source
scholtenfig2.JPG - 25873 Bytes

Discussion

Following changes designed to improve access for potential FEP patients, treated incidence increased, the annual proportion of patients with a diagnosis of schizophrenia decreased, and there was some shift in the referral sources of positive cases. In addition, treatment delay was reduced, especially for cases referred from sources other than health care. While substantial, these changes failed to reach statistical significance—very likely because small numbers were involved. While the observational nature of this study and lack of statistical significance of the findings may limit their generalizability, the data do suggest several potentially important patterns that need to be tested in larger samples over longer periods of time.

The observed decrease in treatment delay in year 3 suggests that the changes designed to improve access may have removed certain barriers over time, although its real significance can only be confirmed if this reduction is sustained in future. The pattern reported here also suggests that the systemic changes may have circumvented the traditional community-based health referral system and its associated delays (16). If replicated, it will confirm the suspected potential of school counsellors and family members to initiate referrals early after the onset of psychosis, provided there is a clinical service that will respond promptly to their referral. The observed lack of change in DUP over the 3 years in cases arriving through acute or hospital-based sources also suggests that a proportion of patients are unaffected by such systemic changes.

In conclusion, relatively simple changes in service delivery to FEP patients appear to initially increase the number of identified cases requiring treatment and lead to reduced DUP. While these findings are encouraging, the nature of this study and the relatively small sample limits their generalizability. A longer study period is needed to ascertain the stability of these changes.


Funding and Support

This study was part of a larger study on the impact of early intervention in schizophrenia and related disorders funded by the Canadian Institutes of Health Research. Additional seed funding for the specific analyses was provided by the Department of Psychiatry, University of Western Ontario.

References

1. McGorry PD, Edwards J, Mihalopoulos C, Harrigan SM, Jackson HJ. EPPIC: an evolving system of early detection and optimal management. Schizophr Bull 1996;22:305–26.

2. McGlashan TH, Johannessen JO. Early detection and intervention with schizophrenia: rationale. Schizophr Bull 1996;22:201–22.

3. Malla AK, Norman RMG, Manchanda R, Ahmed MR, Scholten D, Harricharan R, and others. One year outcome in first-episode psychosis: influence of DUP and other predictors. Schizophr Res 2002;54:231–42.

4. Robinson DG, Woerner MG, Alvir JM, Geisler S, Koreen A, Sheitman B, and others. Predictors of treatment response from a first episode of schizophrenia or schizoaffective disorder. Am J Psychiatry 1999;156:544–9.

5. Craig TJ, Bromet EJ, Fennig S, Tanenberg-Karant M, Lavelle J, and others. Is there an association between duration of untreated psychosis and 24-month clinical outcome in a first-admission series? Am J Psychiatry 2000;157(1):60–6.

6. Norman RMG, Malla AK. Duration of untreated psychosis: a critical examination of the concept and its importance. Psychol Med 2001;31:381–400.

7. Malla AK, Norman RMG. Early intervention in schizophrenia and related disorders: advantages and pitfalls. Curr Opp Psychiatry 2002;15:17–23.

8. Carbone S, Harrigan S, McGorry P, Curry C, Elkins K. Duration of untreated psychosis and 12-month outcome in first-episode psychosis: the impact of treatment approach. Acta Psychiatr Scand 1999;100:96–104.

9. Lincoln CV, McGorry P. Who cares? Pathways to psychiatric care for young people experiencing a first episode of psychosis. Psychiatr Serv 1995;46:1166–71.

10. Lincoln C, Harrigan S, McGorry P. Understanding the topography of the early psychosis pathways. Br J Psychiatry 1998;172(Suppl 33):21–5.

11. Addington J, van Mastrigt S, Hutchinson J, Addington D. Pathways to care: help seeking behaviour in first episode psychosis. Acta Psychiatr Scand 2002;106:358–64.

12. Malla AK, Norman RM, Manchanda R, McLean TS, Harricharan R, Cortese L, and others. Status of patients with first-episode psychosis after one year of phase-specific community-oriented treatment. Psychiatr Serv 2002;53:458–63.

13. Malla AK, Norman RM, McLean TS, McIntosh E. Impact of phase-specific treatment of first episode of psychosis on Wisconsin Quality of Life Index (client version). Acta Psychiatr Scand 2001;103(5):355–61.

14. American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 4th ed. Washington (DC): American Psychiatric Association; 1994

15. First MB, Spitzer RL, Gibbon M, Williams JEW. Structured Clinical Interview for DSM-IV Axis I Disorders-Clinician Version (SCID-CV). Washington (DC): American Psychiatric Press; 1997.

16. Vaglum P. Early detection and intervention in schizophrenia: unsolved questions. Schizophr Bull 1996;22(2):347–51.

Author(s)

Manuscript received January 2003, revised, and accepted April 2003.

1. Graduate Student, Department of Epidemiology and Biostatistics, University of Western Ontario, London, Ontario; Research Associate, Department of Psychiatry, University of Western Ontario, London, Ontario.

2. Director, Division of Clinical Research, Douglas Hospital Research Centre, Montreal, Quebec; Professor, Department of Psychiatry, McGill University, Montreal, Quebec; Scientist, Lawson Health Research Institute, London, Ontario.

3. Professor, Department of Epidemiology and Biostatistics, University of Western Ontario, London, Ontario; Professor, Department of Psychiatry, University of Western Ontario, London, Ontario.

4. Coordinator, PEPP-Montreal, Douglas Hospital Research Centre, Montreal, Quebec.

5. Nurse Case Manager, London Health Sciences Centre, London, Ontario.

6. Associate Professor of Biostatistics, Departments of Comunity Health Sciences and of Clinical Neurosciences, University of Calgary, Calgary, Alberta.

7. Associate Professor, Department of Pediatrics, University of Western Ontario, London, Ontario; Associate Professor, Department of Epidemiology and Biostatistics, University of Western Ontario, London, Ontario; Scientist, Child Health Research Institute, London, Ontario.

Address for correspondence: DJ Scholten, Room 129B, WMCH Bldg, LHSC-SSC, 392 South Street, London, ON N6A 4G5

e-mail: scholten@uwo.ca

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