Innovation summary

In low- and middle-income countries, most services for people living with schizophrenia are located at psychiatric hospitals and other centralized facilities. Lack of human and financial resources inhibits the development of more accessible services. COPSI (Care for People with Schizophrenia in India) was designed to provide evidence for a feasible model of community-based rehabilitation for people with schizophrenia in low- and middle-income countries.

The COPSI trial tested a community-based collaborative care (CBCC) intervention using lay community health workers to provide rehabilitation services alongside facility-based specialist care.  Key features of CBCC include:

Clinical support

  • Structured needs assessments and clinical reviews to tailor treatment plans
  • Individualized rehabilitation and adherence management strategies
  • Strategies to address physical health problems in participants

Psychosocial support

  • Linkages with community agencies and self-help groups
  • Psychoeducational information for both participants and caregivers
  • Specific efforts to help participants and caregivers cope with stigma and discrimination

Impact summary

  • Adherence to treatment nearly three times higher among participants receiving CBCC2
  • CBCC associated with reduced symptom severity and disability scores2
  • The CBCC intervention was more costly than facility-based care

“Now after he [community health worker] came many times I kept on improving. He told me how you get the illness, how you should avoid it. He told me all that. I followed what he told me and now I feel good.”

-Suraj, a COPSI beneficiary

Innovation details

The COPSI study was a parallel group RCT (ISRCTN 56877013) testing a combination of facility-based care and CCBC against facility-based care alone at three sites in India.1

Community-based collaborative care (CBCC):

The CCBC intervention was specifically designed to promote collaboration between the person with schizophrenia, their caregiver(s), and the treatment team (the psychiatrist and the community health worker) to deliver a flexible, individualized and needs-based intervention. All community health workers were systematically trained over 6 weeks and assessed for adequate competence using a specially-developed intervention manual.

The individual components of the COPSI CCBC intervention were:

Clinical support

  • Structured needs assessments at enrollment and, every three months thereafter, to develop matched individualized treatment plans
  • Structured clinical reviews by treating team and supervision for community health workers
  • Adherence management strategies
  • Health promotion strategies to address physical health problems in participants
  • Individualized rehabilitation strategies to improve the personal, social and work functioning of participants

Psychosocial support

  • Psychoeducational information for both participants and caregivers
  • Specific efforts with participants and caregivers to deal with experiences of stigma and discrimination
  • Linkage to self-help groups and other methods of user-led support
  • Networks with community agencies to address social problems, to facilitate social inclusion, access to legal benefits and employment opportunities

Facility-based care

Facility-based care reflects the usual care provided by specialist mental health practitioners (psychiatrists) for persons with schizophrenia and their families in India. This care was available to participants in both study arms:

Clinical support

  • 10-15 minute consultation
  • Prescription for antipsychotic medication
  • Some adherence encouragement

Psychosocial support

  • Some psycho-educational information
  • Some additional discussion of participants’ and/or caregivers’ concerns

Key drivers

Systematic intervention development

  • Systematic development of CBCC intervention and supporting materials for participants and CHWs
  • Development of an innovative informed consent procedure suitable for the context of the trial

Engagement of participants and caregivers

  • High rates of participation (90% retention)

Engagement of staff

  • Continued capacity-building to sustain interest and competence
  • Assistance in career advancement pathways
  • Clear human resource policies
  • Adequate support and supervision resources
  • Additional team-building and conflict resolution efforts
  • Advance planning for staff turnover during study and ongoing training after study

Innovative dissemination

  • Two commissioned documentaries
  • 6-month and 12-month RCT results, plus cost-effectiveness evaluation

Quality and fidelity

  • High rates of delivery of CBCC intervention as per pre-determined quality and fidelity standards across sites

Challenges

Recruitment and retention 

  • Recruitment and retention of key study staff
  • Recruitment and retention of participants over 12 months

Continuation

COPSI in India

  • Currently, the COPSI intervention is being scaled up across multiple sites in two projects in India
  • Stakeholders are advocating for the inclusion of the CBCC intervention in the National Mental Health Program (NMHP) in India

COPSI in other low- and middle-income countries

  • COPSI is being used to inform the development of an intervention for a cluster-randomized trial of community care in Ethiopia (RISE trial)
  • Full and free access to the range of materials and documentaries developed by COPSI is provided in order to support further service development in LMIC

Evaluation methods

The COPSI study was a parallel group RCT (ISRCTN 56877013) testing facility-based care plus CBCC in the intervention arm against facility-based care alone. Six-month and 12-month results have been published in lead journals,2 and results of a further cost-effectiveness evaluation are forthcoming.

Cost of implementation

The cost analysis from the COPSI trial is currently pending. However, evidence suggests that CBCC was more expensive than facility-based care, with more than one third of the cost attributed to supervision.

Impact details

In the COPSI trial, 187 participants received the FBC+ CBCC intervention, while 95 received the FBC intervention2

  • Retention was high; 90% of participants were followed up at 12 months

At 12 months, clinical outcomes of participants were better in the FBC+CBCC intervention arm2

  • Symptom severity (PANSS) and disability (IDEAS) measures were lower in the FBC+CBCC intervention arm.
    • PANSS: adjusted mean difference=-3.75, 95%CI -7.92 to 0.42; p=0.08
    • IDEAS: adjusted mean difference=-0.95, 95%CI -1.68 to -0.23; p=0.01
  • Adherence was higher in the FBC+CBCC arm
    • Adherence: adjusted OR=2.93, 95%CI 1.34-6.39; p=0.01

At 12 months, the FBC+CBCC intervention had not demonstrated superior effects on several social outcomes2

  • Effects on stigma and discrimination experienced by participants were not superior
  • Effects on caregivers’ knowledge and the burden they experienced were not superior

Comments

Congratulations COPSI. The biggest challenge for people with schizophrenia is acceptance and following what is required for treatment. This information is useful and can be adopted here in Zimbabwe where I am from. Thank you.
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