Abstract
Background
Individuals affected by psychotic disorders frequently disengage from mental health services, although reports of this rate in the literature have ranged from 6 to 60%. One of the potential explanations for the large variation is that studies have adopted different definitions. Without a universal definition it is challenging to compare rates and factors leading to disengagement across studies. This systematic review aims to identify and compare how disengagement from psychosis services has been defined, measured and operationalised in the literature to date.
Methods
A systemic literature search of the PubMed, PsycINFO and CINAHL databases was completed following the PRISMA guidelines for systematic reviews.
Results
1506 Studies were identified, of which 30 were eligible to be included. It was found that disengagement was operationalized as either a categorical or continuous variable across studies, with 18 studies classifying it as a categorical, binary variable. Only four studies applied a time period over which disengagement was said to occur, and only four studies used an instrument to measure or predict disengagement. Few studies considered similar factors in their definition, when this occurred it was because the papers came from the same research group.
Discussion
To truly understand the phenomenon of disengagement, studies need to have a comparable outcome variable. The need for consensus on a gold standard definition of disengagement that considers the full breadth of its complexity remains. A potential process for establishing a definition that includes set parameters, agreed upon terminology and time periods of assessment is discussed.
This is a preview of subscription content, access via your institution.

References
- 1.
Garety PA, Rigg A (2001) Early psychosis in the inner city: a survey to inform service planning. Soc Psychiatry Psychiatr Epidemiol 36(11):537–544
- 2.
Milner EC, Rowlands P, Gardner B, Ashby F (2001) First episode of psychosis - an audit of service engagement and management at 1–2 year follow-up. Med Sci Monit Int Med J Exp Clin Res 7(6):1299–1302
- 3.
Addington J, Leriger E, Addington D (2003) Symptom outcome 1 year after admission to an early psychosis program. Can J Psychiatry 48(3):204–207. https://doi.org/10.1177/070674370304800309
- 4.
Turner M, Smith-Hamel C, Mulder R (2007) Prediction of twelve-month service disengagement from an early intervention in psychosis service. Early Intervent Psychiatry 1(3):276–281
- 5.
Doyle R, Turner N, Fanning F, Brennan D, Renwick L, Lawlor E, Clarke M (2014) First-episode psychosis and disengagement from treatment: a systematic review. Psychiatr Serv 65(5):603–611
- 6.
O’Brien AFR, Singh S (2009) Disengagement from mental health services: a literature review. Soc Psychiatry Psychiatr Epidemiol 44(7):558–568
- 7.
Morgan MG, Scully PJ, Youssef HA, Kinsella A, Owens JM, Waddington JL (2003) Prospective analysis of premature mortality in schizophrenia in relation to health service engagement: a 7.5-year study within an epidemiologically complete, homogeneous population in rural Ireland. Psychiatry Res 117(2):127–135
- 8.
Lynda Tait MB, Trower P (2003) Predicting engagement with services for psychosis: insight, symptoms and recovery style. Br J Psychiatry 182:123–128
- 9.
Kim DJ, Brown E, Reynolds S, Geros H, Sizer H, Tindall R, McGorry P, O’Donoghue B (2019) The rates and determinants of disengagement and subsequent re-engagement in young people with first-episode psychosis. Soc Psychiatry Psychiatr Epidemiol. https://doi.org/10.1007/s00127-019-01698-7
- 10.
Tehrani E, Krussel J, Borg L, Munk-Jorgensen P (1996) Dropping out of psychiatric treatment: a prospective study of a first-admission cohort. Acta Psychiatr Scand 94(4):266–271
- 11.
MacBeth AGA, Schwannauer M, Fisher R (2013) Service engagement in first episode psychosis: clinical and premorbid correlates. J Nerv Ment Dis 201(5):359–364
- 12.
Hui CLM, Poon VWY, Ko WT, Miao HY, Chang WC, Lee EHM, Chan SKW, Lin J, Chen EYH (2016) Risk factors for antipsychotic medication non-adherence behaviors and attitudes in adult-onset psychosis. Schizophr Res 174(1–3):144–149
- 13.
McGlashan TH, Johannessen JO (1996) Early detection and intervention with schizophrenia: rationale. Schizophr Bull 22(2):201–222
- 14.
Lecomte T, Spidel A, Leclerc C, MacEwan G, Greaves C, Bentall RP (2008) Predictors and profiles of treatment non-adherence and engagement in services problems in early psychosis. Schizophr Res 102(1–3):295–302
- 15.
Liberati A, Altman D, Tetzlaff J, Mulrow C, Gøtzsche PC (2009) The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Med 6(7):1000100
- 16.
National Heart L, Institute B (2014) Quality assessment tool for observational cohort and cross-sectional studies. National Institutes of Health, Department of Health and Human Services, Bethesda
- 17.
Jacqueline Stowkowy DA, Liu L, Hollowell B, Addington J (2012) Predictors of disengagement from treatment in an early psychosis program. Schizophr Res 136:7–12
- 18.
Cohen K, Edstrom K, Smith-Papke L (1995) Identifying early dropouts from a rehabilitation program for psychiatric outpatients. Psychiatr Serv 46(10):1076–1078
- 19.
Adelufosi AO, Ogunwale A, Adeponle AB, Abayomi O (2013) Pattern of attendance and predictors of default among Nigerian outpatients with schizophrenia. Afr J Psychiatry 16(4):283–287. https://doi.org/10.4314/ajpsy.v16i4.38
- 20.
Chan TC, Chang W, Hui CL, Chan SK, Lee EH, Chen EY (2014) Rate and predictors of disengagement from a 2-year early intervention program for psychosis in Hong Kong. Schizophr Res 153(1–3):204–208
- 21.
Svedberg B, Mesterton A, Cullberg J (2001) First-episode non-affective psychosis in a total urban population: a 5-year follow-up. Soc Psychiatry Psychiatr Epidemiol 36(7):332–337
- 22.
Garety PA, Rigg A (2001) Early psychosis in the inner city: a survey to inform service planning. Soc Psychiatry Psychiatr Epidemiol 36(11):537–544
- 23.
Craig T, Power P (2010) Inpatient provision in early psychosis. In: French P, Smith J, Shiers D, Reed M, Rayne M (eds) Promoting recovery in early psychosis: a practice manual, vol xv. Wiley, Amsterdam, pp 17–26 299 pp
- 24.
Reeves S, Stewart R, Howard R (2002) Service contact and psychopathology in very-late-onset schizophrenia-like psychosis: the effects of gender and ethnicity. Int J Geriatr Psychiatry 17(5):473–479. https://doi.org/10.1002/gps.614
- 25.
Johnstone EC, Owens D, Gold A, Crow T, Macmillan J (1984) Schizophrenic patients discharged from hospital: a follow-up study. Br J Psychiatry 145:586–590
- 26.
Kendrick T, Burns T, Garland C, Greenwood N, Smith P (2000) Are specialist mental health services being targeted on the most needy patients? The effects of setting up special services in general practice. Br J Gen Pract J R Coll Gen Pract 50(451):121–126
- 27.
Schimmelmann BG, Conus P, Schacht M, McGorry P, Lambert M (2006) Predictors of service disengagement in first-admitted adolescents with psychosis. J Am Acad Child Adolesc Psychiatry 45(8):990–999. https://doi.org/10.1097/01.chi.0000223015.29530.65
- 28.
Anderson KK, Fuhrer R, Schmitz N, Malla AK (2013) Determinants of negative pathways to care and their impact on service disengagement in first-episode psychosis. Soc Psychiatry Psychiatr Epidemiol 48(1):125–136. https://doi.org/10.1007/s00127-012-0571-0
- 29.
Maraj A, Veru F, Morrison L, Joober R, Malla A, Iyer S (2017) Disengagement in immigrant groups receiving services for a first episode of psychosis. Schizophr Res. https://doi.org/10.1016/j.schres.2017.07.054
- 30.
Holmes AC, Hodge MA, Bradley G, Bluhm A, Hodges J, Didio L, Markulev N (2005) Accommodation history and continuity of care in patients with psychosis. Aust N Z J Psychiatry 39(3):175–179. https://doi.org/10.1080/j.1440-1614.2005.01540.x
- 31.
Anderson KK, Fuhrer R, Schmitz N, Malla AK (2013) Determinants of negative pathways to care and their impact on service disengagement in first-episode psychosis. Soc Psychiatry Psychiatr Epidemiol 48(1):125–136
- 32.
Conus P, Lambert M, Cotton S, Bonsack C, McGorry PD, Schimmelmann BG (2010) Rate and predictors of service disengagement in an epidemiological first-episode psychosis cohort. Schizophr Res 118(1–3):256–263. https://doi.org/10.1016/j.schres.2010.01.032
- 33.
Schimmelmann BG, Conus P, Schacht M, McGorry P, Lambert M (2006) Predictors of service disengagement in first-admitted adolescents with psychosis. J Am Acad Child Adolesc Psychiatry 45(8):990–999
- 34.
Anderson KK (2012) Health services use and treatment delay for patients experiencing a first-episode of psychosis: a mixed methods study. McGill University, Canada
- 35.
Alicia Spidel CG, Yuille J, Lecomte T (2015) A comparison of treatment adherence in individuals with a first episode of psychosis and inpatients with psychosis. Int J Law Psychiatry 39:90–98. https://doi.org/10.1016/j.ijlp.2015.01.026
- 36.
Zheng S, Poon LY, Verma S (2013) Rate and predictors of service disengagement among patients with first-episode psychosis. Psychiatr Serv 64(8):812–815
- 37.
Lau KW, Chan SK, Hui CL, Lee EH, Chang WC, Chong CS, Lo WT, Chen EY (2017) Rates and predictors of disengagement of patients with first-episode psychosis from the early intervention service for psychosis service (easy) covering 15 to 64 years of age in Hong Kong. Early Interv Psychiatry 13(3):398–404
- 38.
Schottle D, Schimmelmann BG, Ruppelt F, Bussopulos A, Frieling M, Nika E, Nawara LA, Golks D, Kerstan A, Lange M, Schodlbauer M, Daubmann A, Wegscheider K, Rohenkohl A, Sarikaya G, Sengutta M, Luedecke D, Wittmann L, Ohm G, Meigel-Schleiff C, Gallinat J, Wiedemann K, Bock T, Karow A, Lambert M (2018) Effectiveness of integrated care including therapeutic assertive community treatment in severe schizophrenia-spectrum and bipolar I disorders: four-year follow-up of the ACCESS II study. PLoS One 13(2):e0192929. https://doi.org/10.1371/journal.pone.0192929
- 39.
Craig TK, Garety P, Power P, Rahaman N, Colbert S, Fornells-Ambrojo M, Dunn G (2004) The Lambeth Early Onset (LEO) Team: randomised controlled trial of the effectiveness of specialised care for early psychosis. BMJ 329(7474):1067
- 40.
Cohen CI, Teresi J (1996) Predictors of engagement in an urban geriatric psychiatry clinic. Am J Geriatr Psychiatry 4(4):291–297. https://doi.org/10.1097/00019442-199622440-00003
- 41.
Dodgson G, Ross L, Tiffin P, Mitford E, Brabban A (2012) Outcomes post-discharge from an early intervention in psychosis service. Early Intervent Psychiatry 6(4):465–468. https://doi.org/10.1111/j.1751-7893.2012.00349.x
- 42.
Faccincani C, Mignolli G, Platt S (1990) Service utilisation, social support and psychiatric status in a cohort of patients with schizophrenic psychoses: a 7 year follow-up study. Schizophr Res 3(2):139–146
- 43.
Lam CCSF, Reeves SJ, Stewart R, Howard R (2016) Service and treatment engagement of people with very late-onset schizophrenia-like psychosis. Psychiatr Bull 40(4):185–186
- 44.
McCreadie RG, Leese M, Tilak-Singh D, Loftus L, MacEwan T, Thornicroft G (1997) Nithsdale, Nunhead and Norwood: similarities and differences in prevalence of schizophrenia and utilisation of services in rural and urban areas. Br J Psychiatry J Ment Sci 170:31–36
- 45.
Kruse M (2012) Predicting disengagement from care in an early psychosis patient cohort in the United States. Yale Med Thesis Digit Lib 1737:1–42
- 46.
Alvarez-Jimenez M, Priede A, Hetrick S, Bendall S, Killackey E, Parker A, McGorry P, Gleeson J (2012) Risk factors for relapse following treatment for first episode psychosis: a systematic review and meta-analysis of longitudinal studies. Schizophr Res 139(1–3):116–128
- 47.
Chen EY, Chang WC, Hui CL, Chan SK, Lee EH, Wong GH (2019) Duration of early intervention for psychosis: 2 years versus 3 years. Hong Kong Med J 25(Suppl 2):10–14
- 48.
McGuire AB, Bonfils KA, Kukla M, Myers L, Salyers MP (2013) Measuring participation in an evidence-based practice: illness management and recovery group attendance. Psychiatry Res 210(3):684–689
- 49.
Maraj A, Veru F, Morrison L, Joober R, Malla A, Iyer S, Shah J (2017) Disengagement in immigrant groups receiving services for a first episode of psychosis. Schizophr Res 193:399–405
- 50.
Zheng S, Poon LY, Verma S (2013) Rate and predictors of service disengagement among patients with first-episode psychosis. Psychiatr Serv (Washington, DC) 64(8):812–815. https://doi.org/10.1176/appi.ps.201200199
- 51.
Conus P, Cotton S, Schimmelmann BG, McGorry PD, Lambert M (2017) Rates and predictors of 18-months remission in an epidemiological cohort of 661 patients with first-episode psychosis. Soc Psychiatry Psychiatr Epidemiol 52(9):1089–1099. https://doi.org/10.1007/s00127-017-1388-7
- 52.
Tindall RM, Simmons MB, Allott K, Hamilton BE (2018) Essential ingredients of engagement when working alongside people after their first episode of psychosis: a qualitative meta-synthesis. Early Intervent Psychiatry 12(5):784–795
- 53.
Loughlin M, Bucci S, Brooks J, Berry K (2019) Service users’ and carers’ experiences of engaging with early intervention services: a meta-synthesis review. Early Interv Psychia. https://doi.org/10.1111/eip.12803
- 54.
Hansen H, Stige SH, Davidson L, Moltu C, Veseth M (2018) How do people experience early intervention services for psychosis? A meta-synthesis. Qual Health Res 28(2):259–272
- 55.
Linstone HA, Turoff M (1975) The delphi method. Addison-Wesley, Reading
- 56.
Trochim WM (1989) An introduction to concept mapping for planning and evaluation. Evaluat Progr Plan 12(1):1–16
Funding
There is no funding associated with this review.
Author information
Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors acknowledge they have no conflicts of interest.
Rights and permissions
About this article
Cite this article
Reynolds, S., Kim, D.J., Brown, E. et al. Defining disengagement from mental health services for individuals experiencing first episode psychosis: a systematic review. Soc Psychiatry Psychiatr Epidemiol 54, 1325–1335 (2019). https://doi.org/10.1007/s00127-019-01750-6
Received:
Accepted:
Published:
Issue Date:
Keywords
- Disengagement
- Systematic review
- First episode psychosis
- Psychotic disorders
- Psychosis