A new consensus statement published in JAMA Network Open makes eight recommendations for addressing early death in people diagnosed with schizophrenia spectrum disorder, bipolar disorder, and disabling major depressive disorder. The researchers note that people with SMI die 10 to 25 years earlier than people without such a diagnosis, on average.
The article, written by 28 members1 of a virtual roundtable led by Karen L. Fortuna of Dartmouth College, suggests that trauma-informed care and advancing the support roles of friends and family are among the most pressing issues in preventing early death for people with serious mental illness (SMI).
âInterventions need to recognize the role of trauma and its impact on the lifespan and potential impact on health behaviors. A strategic approach may be using community-engaged research to adapt interventions with widespread uptake, such as peer support, to include intervention components that focus on addressing trauma (eg, emotional CPR),â they write.
The goal of the current research was to present a lived-experience led research agenda capable of addressing early death in people diagnosed with SMI. To accomplish this goal, the researchers identified authors of scientific literature on early death and SMI and invited them to participate in a roundtable discussion about the prevention of early death in patients diagnosed with a SMI. The authors then identified other candidates for participation in the roundtable discussion.
In total, 28 people participated in the roundtable discussion over the course of two days. Twenty-two had lived experience of SMI, 10 were clinicians, seven were caregivers for people diagnosed with SMI, and six were certified peer specialists. Policy makers, advocates, scientists, and executive leaders were also included among the participants.
The roundtable began with a discussion on the current scientific understanding of early death in people diagnosed with SMIs. Participants then identified gaps in knowledge around early death and SMI and generated a research agenda. Agreements on research topics and recommendations were reached using six rounds of emails in which the participants anonymously ranked suggestions. After each round of emails, researchers aggregated the responses and used an anonymous survey to ensure a 100% consensus.
The roundtable of experts gave the following eight recommendations in order of priority:
- “Improve the Empirical Understanding of the Direct and Indirect Social and Biological Contributions of Trauma on Morbidity and Early Mortality”
People with a SMI diagnosis are much more likely than the general population to have experienced trauma. According to the authors, between 51% and 98% of people using public mental health services have a history of trauma. Trauma can lead to harmful coping mechanisms such as substance abuse and unhealthy eating which can contribute to early death. The authors recommend that researchers pay closer attention to the role of trauma in early death.
- “Advance the Role of Family, Extended Families, and Informal Supporters”
Past research has found positive results from giving psychoeducational training to caregivers of people diagnosed with a SMI. The World Health Organization also recognizes the efficacy of family interventions. The authors recommend including family, extended family, and informal supporters in SMI interventions. The authors also recommend more research be done around supporting caregivers of people diagnosed with a SMI.
- “Recognize the Importance of Co-occurring Disorders and Early Mortality”
People that have been diagnosed with a SMI have a high prevalence of substance use disorders. Multiple disorders increase the risk of early death and suicide. The authors also note that despite the high rates of co-occurrence between SMI and substance abuse, mental health and substance abuse treatment systems are often separated creating unnecessary obstacles for service users. The authors recommend more research into integrating mental health and substance abuse interventions as well as qualitative research into smoking cessation programs for people diagnosed with a SMI.
- “Redefine Clinical Education to Reduce Stigma and Support Clinicians Through Technological Advancements to Improve Diagnostic Accuracy”
Although people with a SMI diagnosis have twice as many healthcare encounters as the general population, they receive less healthcare-related treatment. Stigma against those diagnosed with an SMI is likely responsible to some degree, as healthcare professionals often dismiss health complaints of mental health service users. The authors recommend healthcare professionals and social workers be exposed to people with a SMI diagnosis during residency and/or coursework. They also recommend the use of technology to assist in universal screening to improve accuracy, such as using ânatural-language processingâ while recording medical sessions.
- “Examine Outcomes Meaningful to People With an SMI Diagnosis, Such as Loneliness and Sense of Belonging, and Stigma and Their Complex Relationship With Early Mortality”
The authors recommend the development of a lived-experience based research network to explore the connection between early death in people diagnosed with a SMI and variables such as loneliness and stigma. This research network could also examine these variables alongside biological, social, and psychological considerations.
- “Advance the Science of Pharmaceuticals, Drug Discovery, and Choice in Medication Use”
According to the authors, proper use of antipsychotic drugs can reduce death in people diagnosed with a SMI. The authors recommend decision aids or decision support for service users considering the use of psychotropic drugs. They also point to stem cell research, novel protein-drug conjugate modeling, and advances in precision medicine as holding great potential in reducing early death in those with a SMI diagnosis.
- “Use Precision Medicine to Inform Treatment”
Although SMI diagnoses include many varying symptoms and vastly different experiences, medical research tends to group everyone with an SMI diagnosis together. As people with a SMI diagnosis tend to have more healthcare encounters that produce tremendous amounts of data, the authors recommend that this data be fed through âpredictive analyticsâ to select which treatment options are best for each service user. They did not cite any sources for the notion that this was feasible.
- “Redefine the Terms System Literacy and Health Literacy”
The authors define health literacy as the ability of an individual to find, understand, and use health-related information. They cite research indicating that 66% of people with a SMI diagnosis lack health literacy, compared with 26% of the general population. The authors suggest the use of “universal design,” an ethic of designing things to grant access to as many people as possible, to make health-related info available to as many people as possible.
The authors acknowledge only a single limitation to the current study. Not all causes of early death (such as suicide) could be considered; they write that this was because they only had limited time to conduct their roundtable. The participants in the roundtable were mostly white (71.4%) and female (71.4%). This means perspectives from other races and genders may be underrepresented. The authors conclude:
“The recommendations presented herein offer a starting point for changing practice and highlighting lived experienceâled research priorities as an option to move the field forward. If we recognize the value of disrupting our current research and make changes in how we design and conduct research, select interventionists, and structure our health care systems, medical education systems, and dissemination, we may impact the early mortality health disparity for persons with SMI.”
Research has found that 14.3% of deaths worldwide can be attributed to mental disorders and that people with a psychiatric diagnosis live 8.3 years less than the general population. People with a psychiatric diagnosis seem especially susceptible to lung and heart issues.
Although the authors of the current work report that proper use of antipsychotic drugs can reduce early deaths in people diagnosed with SMI, there is a tremendous amount of evidence that long term use of these drugs have significant negative outcomes, and may not prevent early death. Despite this, service users often have a difficult time finding psy-professionals to assist them in withdrawing from these dangerous drugs.
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Fortuna, K. et al. (2023). Lived Experience-Led Research Agenda to Address Early Death in People With a Diagnosis of a Serious Mental Illness: A Consensus Statement. JAMA Network Open, 6(5), e2315479. doi:10.1001/jamanetworkopen.2023.15479 (Full Text)
So were the voices of survivors at the round table? What was the gender number? What professions were included or not included?
Who funded the round table? Where are the transcripts of the discussions? Where was it held and was type of hospitality services were used? Was there a general call to all in the various systems or was this an invitation only series of events?
Was there any discussion of history? Where if any where the family concern voices gathered from? Was this solely NAMI based?
Where other medical issues such as TBI or environmental issues that can mimic or are but different from so called psychosis considered and a discussion of the role they play in all of this? Was treatment with minimal use of chemicals and difference from first altered mental states a topic and were there any voices who expose this sort of treatment involved? Were side effects and withdrawal issues discussed?
Gatherings for round tables are great. Acknowledgement of the stark reality of death is important but before the round tables begin one has to everyone there and a format for all the waves and rocks of the tables that will assuredly happen.â
Last question was there a ritual or ceremony for the dead? Was there a Reafing of names or telling of stories? Did they have a so called wake? And was there any form of creating a ritual of not only apology for amends making?
This could have been the beginning of amends but partband small patchwork AINT going to cut it.
And where you involved Richard?
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