What proportion of patients with psychosis is willing to take part in research? A mental health electronic case register analysis

Abstract

ObjectiveThe proportion of people with mental health disorders who participate in clinical research studies is much smaller than for those with physical health disorders. It is sometimes assumed that this reflects an unwillingness to volunteer for mental health research studies. We examined this issue in a large sample of patients with psychosis.DesignCross-sectional study.SettingAnonymised electronic mental health record data from the South London and Maudsley NHS Foundation Trust (SLaM).Participants5787 adults diagnosed with a psychotic disorder.ExposureWhether approached prior to 1 September 2014 for consent to be approached about research participation.Main outcome measuresNumber of days spent in a psychiatric hospital, whether admitted to hospital compulsorily, and total score on the Health of the Nation Outcome Scale (HoNOS) between 1 September 2014 and 28 February 2015 with patient factors (age, gender, ethnicity, marital status and diagnosis) and treating clinical service as covariates.Results1187 patients (20.5% of the total sample) had been approached about research participation. Of those who were approached, 773 (65.1%) agreed to be contacted in future by researchers. Patients who had been approached had 2.3 fewer inpatient days (95% CI −4.4 to −0.3, p=0.03), were less likely to have had a compulsory admission (OR 0.65, 95% CI 0.50 to 0.84, p=0.001) and had a better HoNOS score (β coefficient −0.9, 95% CI −1.5 to −0.4, p=0.001) than those who had not. Among patients who were approached, there was no significant difference in clinical outcomes between those agreed to research contact and those who did not.ConclusionsAbout two-thirds of patients with psychotic disorders were willing to be contacted about participation in research. The patients who were approached had better clinical outcomes than those who were not, suggesting that clinicians were more likely to approach patients who were less unwell.

Factors Affecting Participant Recruitment and Retention in Borderline Personality Disorder Research: A Feasibility Study

“…(15) In studies of other psychiatric illnesses, recruitment rates vary widely between 35% and 68%. (10,13,16) In terms of retention, 70% of the recruited participated remained in the TOB study. This is similar to ndings from a meta-analysis of psychotherapy trials for BPD, which reported an overall retention rate of 71-75%.…”

“…17However, studies on psychotic disorders had found that younger patients are more likely to participate in research studies compared to older patients. (12,13) In terms of clinical variables, a meta-analysis found that commitment to change, low impulsivity, and strong therapeutic relationship were predictive of retention among patients with BPD. (17) In studies of psychotic disorders, patients with higher illness severity, suicidality, longer length of hospitalization, and medical comorbidities were less likely to be approached about study participation (13) and more likely to decline participation when approached.…”

“…In fact, psychiatric research samples do not tend to be representative of the overall patient population (11), and research participants differ signi cantly from non-participants in terms of illness severity and symptomatology. (12,13) Although studies have explored this issue in other psychiatric conditions, no study has explored factors affecting study recruitment or retention in patients with BPD, or the representativeness of study samples in BPD research. Better understanding of these issues will help contextualize current research ndings, improve recruitment and retention, and allow for more representative samples in future research.…”

“…demographic and clinical characteristics between research participants and non-participants. (12,13) Similar approaches could be used for BPD in the future. Doing so will help shed light on whether the current research on BPD is truly representative of the overall patient population, and identify potential strategies to improve external validity of BPD research going forward.…”

Questionnaire on Attitude towards Research and Care (QuARC): a survey of patients with psychosis

“…Nonetheless, only few persons are approached for consent to participate, tending researchers to involve less severely ill and with better outcomes patients with possible recruitment bias (Patel et al, 2017).…”