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Peer-reviewedCC BY 4.0Therapeutic Innovation & Regulatory Science

Schizophrenia Impacts and Treatment Priorities: Results of An Externally-Led Patient-Focused Drug Development Meeting Survey

  • Ilse S. Peterson1
  • Ramaa Chitale2
  • Theresa Frangiosa1,3
  • Holly B. Krasa3,4
  • Paulie VonEdWærd-Benjamin5
  • Anita Fisher6
  • Jessica T. Markowitz4
  • Arun Nagendra3
6 affiliations
  1. 1Faegre Drinker Consulting, 1500 K Street NW, Suite 1100, Washington, DC 20005 USA
  2. 2Subcontractor to Faegre Drinker Consulting, Washington, DC United States
  3. 3Schizophrenia & Psychosis Action Alliance, Alexandria, VA USA
  4. 4Blue Persimmon Group, Washington, DC USA
  5. 5PFDD Meeting Co-Moderator & Diagnosee, Michigan, USA
  6. 6Fisher Mental Health Consulting, Spring Valley, CA USA
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Abstract

Objective: Using survey data gathered for an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting led by the schizophrenia community to inform the US Food and Drug Administration, this publication examines schizophrenia’s impacts on daily life, reasons for discontinuation of medication, and desired outcomes of future medications.

Methods: An online, cross-sectional survey about schizophrenia’s impacts on daily life, treatment experiences, and desired outcomes of future medications was developed for adults with schizophrenia and caregivers of adults with schizophrenia who could not complete the survey. Patient advocacy organizations participating in the EL-PFDD meeting recruited respondents via email and social media between August 9, 2022 and September 26, 2022.

Results: 282 survey responses from 96 people with schizophrenia and 186 caregiver proxies are reflected in this publication. Both respondent groups reported significant impacts of schizophrenia on aspects of daily living spanning work and education, relationships, responsibilities at home, and finances. For people with schizophrenia, the most frequently reported reason for discontinuing medications was weight gain (66% of 83 question respondents); for caregiver proxies, it was “feeling flat” (57% of 165 question respondents). Preventing delusions, preventing hallucinations, and enjoying daily activities received the highest average ratings as desired outcomes of future treatments from people with schizophrenia, whereas preventing delusions and making it easier to maintain relationships had the highest average ratings from caregiver proxies.

Conclusions: As exploratory work on community treatment priorities, this research can inform patient-focused drug development endeavors by patients, advocates, industry, and regulators to address unmet needs in schizophrenia moving forward.

Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1007/s43441-026-01001-2.

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Cite

BibTeXRIS
BibTeX
@article{peterson2026schizophrenia,
  title = {{Schizophrenia Impacts and Treatment Priorities: Results of An Externally-Led Patient-Focused Drug Development Meeting Survey}},
  author = {Ilse S. Peterson and Ramaa Chitale and Theresa Frangiosa and Holly B. Krasa and Paulie VonEdWærd-Benjamin and Anita Fisher and Jessica T. Markowitz and Arun Nagendra},
  journal = {Therapeutic Innovation \& Regulatory Science},
  year = {2026},
  month = jul,
  doi = {10.1007/s43441-026-01001-2},
  url = {https://doi.org/10.1007/s43441-026-01001-2},
  note = {CC BY 4.0},
}
RIS
TY  - JOUR
TI  - Schizophrenia Impacts and Treatment Priorities: Results of An Externally-Led Patient-Focused Drug Development Meeting Survey
AU  - Ilse S. Peterson
AU  - Ramaa Chitale
AU  - Theresa Frangiosa
AU  - Holly B. Krasa
AU  - Paulie VonEdWærd-Benjamin
AU  - Anita Fisher
AU  - Jessica T. Markowitz
AU  - Arun Nagendra
PY  - 2026
DA  - 2026/07/23
JO  - Therapeutic Innovation & Regulatory Science
DO  - 10.1007/s43441-026-01001-2
UR  - https://doi.org/10.1007/s43441-026-01001-2
AB  - Objective: Using survey data gathered for an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting led by the schizophrenia community to inform the US Food and Drug Administration, this publication examines schizophrenia’s impacts on daily life, reasons for discontinuation of medication, and desired outcomes of future medications.  Methods: An online, cross-sectional survey about schizophrenia’s impacts on daily life, treatment experiences, and desired outcomes of future medications was developed for adults with schizophrenia and caregivers of adults with schizophrenia who could not complete the survey. Patient advocacy organizations participating in the EL-PFDD meeting recruited respondents via email and social media between August 9, 2022 and September 26, 2022.  Results: 282 survey responses from 96 people with schizophrenia and 186 caregiver proxies are reflected in this publication. Both respondent groups reported significant impacts of schizophrenia on aspects of daily living spanning work and education, relationships, responsibilities at home, and finances. For people with schizophrenia, the most frequently reported reason for discontinuing medications was weight gain (66% of 83 question respondents); for caregiver proxies, it was “feeling flat” (57% of 165 question respondents). Preventing delusions, preventing hallucinations, and enjoying daily activities received the highest average ratings as desired outcomes of future treatments from people with schizophrenia, whereas preventing delusions and making it easier to maintain relationships had the highest average ratings from caregiver proxies.  Conclusions: As exploratory work on community treatment priorities, this research can inform patient-focused drug development endeavors by patients, advocates, industry, and regulators to address unmet needs in schizophrenia moving forward.  Supplementary Information: The online version contains supplementary material available at https://doi.org/10.1007/s43441-026-01001-2.
SN  - 2168-4790
SN  - 2168-4804
ER  -