SD 9.2], disease duration 8.9 years [SD 5.0], UPDRS-Part III off medication 38.5 [SD 10.5], Dementia Rating Scale-II 135.4 [SD 6.0]). Approximately 19% of patients did not proceed to surgery, with neuropsychological red flags being the most commonly documented reason (57%). Patients who underwent DBS surgery had significantly better DBS-CRS scores than those who did not (p < 0.001). The two strongest and unique neuropsychological contributors to DBS-CRS ratings were delayed memory and executive function, followed by language and visuoperception, based on hierarchical linear regression that accounted for 77.2% of the variance. In terms of outcome, DBS-CRS scores were associated with higher quality of life, less severe motor symptoms, and better daily functioning 6 months following DBS surgery. Together, these findings support the construct and predictive validity of the DBS-CRS as a concise tool for effectively communicating pre-DBS cognitive concerns to an interdisciplinary team, thereby aiding decision making in potential DBS candidates.To more efficiently communicate the results of neuropsychological assessment to interdisciplinary teams, the University of Florida Neuropsychology Service developed a Deep Brain Stimulation-Cognitive Rating Scale (DBS-CRS). This tool condensed results of a 3-h exam into a five-point scale ranging from 1 (least) to 5 (most) cognitive concern for DBS surgery. In this study, we evaluated the role of the DBS-CRS in clinical decisions by the interdisciplinary team to proceed to surgery, its relationship to objective neuropsychological scores, and its predictive utility for clinical outcome. We retrospectively examined 189 patients with Parkinson’s disease who were evaluated for DBS candidacy (mean age 64.8 [ Deep brain stimulation (DBS) is a powerful treatment which can be used for many of the motor symptoms, and also the motor fluctuations, associated with Parkinson’s disease (PD). DBS involves the implantation of electrical leads deep into the brain and can be applied to one of several target sites—typically the subthalamic nucleus (STN) or the globus pallidus internus (GPi); the DBS leads deliver high-frequency stimulation and are controlled by a pulse generator usually implanted in the chest wall. Since approval by the U.S. Food and Drug Administration in 1997, more than 150,000 DBS surgeries have been performed, and careful patient selection has emerged as a major determinant for clinical success . SelectiA major goal of pre-DBS neuropsychological testing is to provide the patient and the treatment team with information pertinent to the risk-benefit ratio of pursuing surgery; this includes whether patients can successfully meet pre- and post-operative demands . It also includes the identification of any cognitive or psychological contraindications to DBS  . To addrIn order to communicate the results of the pre-DBS neuropsychological evaluation more efficiently to an interdisciplinary team, the neuropsychology service at the University of Florida (UF) created a Likert rating scale—the UF Deep Brain Stimulation Cognitive Rating Scale (DBS-CRS)—which ranges from 1 (least) to 5 (most) cognitive concern for surgery. Although the scale has been used at UF clinically since 2013, the relationship of DBS-CRS scores to the decision to proceed to surgery and to objective neuropsychological test scores had not been previously examined. Important questions remain such as whether the recommendations communicated via the DBS-CRS had an effect on the decision to proceed to surgery. Other questions also emerged including what patterns of neuropsychological performance drive clinical decision making, thereby leading to higher (worse) scores on the DBS-CRS and thus potentially raising a red flag for DBS cognitive risk. Finally, we were interested in whether scores on the DBS-CRS were predictive of quality of life post-DBS surgery.The current study had three aims. First, we wanted to determine how recommendations communicated via the DBS-CRS impacted the decision to proceed to surgery by the interdisciplinary team. We hypothesized that cognitive concerns would emerge as the most common reason for a recommendation against DBS surgery. In these cases, we predicted that higher (worse) DBS-CRS scores would be present. This hypothesis was based on the assumption that other common reasons for not proceeding with DBS surgery  would have been informally identified and excluded prior to a formal interdisciplinary evaluation for DBS candidacy.Second, we sought to learn what aspects of the objective neuropsychological examination raised concerns for cognitive risk and thus led to worse scores on the DBS-CRS. In PD, a ‘fronto-executive’ profile on neurocognitive testing is a common result , and thiThird, we examined whether scores on the DBS-CRS were associated with self-reported quality of life during the 6-month period following DBS surgery. We focused on quality of life, as it is closest to a patient centric perspective for this analysis, rather than focusing on strict cognitive outcomes . We hypoThis study involved a retrospective chart review of individuals with PD who were potential DBS surgery candidates at the UF Norman Fixel Institute for Neurological Diseases. Data encompassed information prior to potential DBS surgery . Six-month follow-up included quality of life, mood/motivation, and motor scales. Study procedures were approved by the University of Florida Institutional Review Board. Participants included 189 patients being considered for DBS surgery between 2013 and 2018. This time range was based on when the DBS-CRS began to be used (2013) and an arbitrary stop point of 2018 for data collection. Referral for DBS surgery was generally contingent on motor symptom responsivity to levodopa  and absence of conspicuous dementia. All DBS candidates underwent a 2-day “Fast Track” evaluation consisting of independent evaluations by specialists in the following areas: neurology, neurosurgery, neuropsychology, psychiatry, physical and occupational therapy, speech and swallowing therapy, and social work.To be included, participants had a diagnosis of PD, as determined by UF movement disorders neurologists, and were a candidate for first-time DBS surgery. Exclusion criteria included: (a) history of previous neurosurgery; (b) diagnosis of any additional or comorbid movement disorders  as determined by UF movement disorders neurologists. For follow-up analyses, patients were excluded if they experienced an intra-operative adverse event , post-operative infection, or had bilateral DBS surgery.All DBS candidates completed a battery of neuropsychological, mood, and motivation measures that took between 2 and 3 h to complete. The battery consisted of a cognitive screening measure, the Dementia Rating Scale -2 DRS-2; , and staMood and motivation measures included the Beck Depression Inventory II . On these measures, higher scores indicated greater severity of symptoms and worse quality of life. BDI-II; , the Apa BDI-II; , and the BDI-II; . Partici PDQ-39; . AdditioPatients were assigned a cognitive risk rating based on the neuropsychological findings by a board-certified neuropsychologist (DB) in conjunction with neuropsychology trainees. A five-point Likert scale, known as the Deep Brain Stimulation- Cognitive Rating Scale (DBS-CRS), was used to clearly and simply convey concerns, if any, about the potential cognitive risks for moving forward with DBS surgery. The rating guidelines included the following.(1)Scores of 1 were reserved for individuals who were deemed “cognitive superstars,” with no areas of cognitive impairment.(2)Scores of 2 reflected minimal cognitive weaknesses that were isolated to the executive domain.(3)Scores of 3 were given to individuals with more pronounced executive impairments, but consistent with cognitive sequelae of PD.(4)Scores of 4 reflected cognitive impairment, worse than expected for PD, or atypical impairments  that might be suggestive of other disease entities .(5)Scores of 5 indicated severe cognitive impairment, including PD dementia, or other cognitive patterns suggestive of other diagnoses . Surgery was not recommended.Regarding memory, poor performance on word list learning tasks was viewed as a more frontally mediated deficit and part of the executive profile based on a robust literature with non-demented PD and older adults . HoweverIn summary, these DBS-CRS ratings were based on clinical judgment and interpretation of the neuropsychological exam. They served to distil and communicate recommendations by neuropsychology to the interdisciplinary team.Each DBS surgery candidate was discussed at an interdisciplinary monthly conference, where the team arrived at a consensus decision regarding recommendations for DBS surgery. Reasons for not proceeding with surgery were coded in the following categories: Cognitive concerns only, Cognitive concerns plus another concern, Neurological concerns only, Psychiatric concerns only, General health concerns only, or Multiple reasons (excluding cognitive concerns). Confirmation of DBS surgery was based on medical chart review. Patients who were cleared for DBS surgery but later decided not to proceed were coded as “Patient choice.” The reasons for not proceeding ranged from ‘fears’ about being constrained by the head ring  to improved symptoms following dopaminergic medication optimization.SPSS Version 25  was usedAs shown in SD = 1.00) and were slightly kurtotic in distribution . Examining the relationship of DBS-CRS scores and other PD disease characteristics revealed that DBS-CRS scores did not significantly correspond with years since diagnosis (p > 0.05), but they did correspond to motor symptom severity whether on or off medications . As a group, performance on a dementia screener (DRS-2) was above the clinical cutoff, though scores ranged from 100 (impaired) to 144 (maximum possible). Scores on individual cognitive composites from the neuropsychological exam indicated worst performance in the executive domain, which is typical for individuals with PD. Results of a repeated measures analysis of variance  and Bonferroni corrected pairwise comparisons reflected the following pattern of significant findings (p’s < 0.05): Executive Function < Delayed Memory < .The DBS-CRS ratings across the PD patients ranged from 1 to 5, with a mean of 2.69  did not proceed to DBS surgery. The most common reason was cognitive concern (57%) and included 10 individuals for whom cognition was the sole reason and another 10 for whom cognition was one of multiple reasons. The next most common reason for not proceeding with DBS surgery was patient choice (23%) because of reasons such as claustrophobia (related to the head rim used during surgery) or adequate response to dopaminergic medications. Other patients did not proceed due to psychiatric concerns only (9%), multiple reasons , general health concerns (3%), and neurological concerns (3%).Comparison of characteristics of patients who did and did not proceed to DBS surgery is shown in Further comparisons of the DBS+ and DBS− groups indicated that the two groups differed on motor (UPDRS on and off) and cognitive symptoms. Motor-wise, scores on the UPDRS-III, both on and off medication, were significantly better for those who underwent surgery (DBS+) relative to those who did not (DBS−). Cognitively, patients who had surgery (DBS+), relative to those who did not (DBS−), scored significantly better on the DRS-2 and all neuropsychological domain composites, except visuoperception. In contrast, the DBS+ and DBS− groups were similar across age, education, sex distribution, disease duration, mood scales, and use of anti-depressant and anti-anxiety medications.To identify what domains of the neuropsychological exam contributed to the DBS-CRS ratings, we performed a hierarchical linear regression. The first block in the model included ‘non-cognitive’ variables that were significantly correlated with DBS-CRS ratings, based on Spearman rho analyses. These variables included education and scores on the BDI-II, AS, and the STAI (both trait and state scores) and can be conceptualized as ‘covariates.’ Block 2 included the five cognitive domain composite scores: Executive Function, Delayed Memory, Attention/Working Memory, Language, and Visuoperception.F = 37.65, p < 0.001] that accounted for 77.2% of the variance. The first block of education and mood scores significantly predicted DBS-CRS scores  and accounted for 10.1% of the variance. Adding the second block of cognitive composites significantly improved the model . After bootstrapping, due to non-normality of the data, the relative strengths of the individual cognitive domain predictors of the DBS-CRS scores were as follows: Delayed Memory , Executive Function , Language , and Visuoperception . The only domain that was not significant was Attention/Working Memory . Thus, the two strongest and unique contributors to the DBS-CRS scores were performance on delayed recent memory and executive function tasks.Regression results indicated an overall significant model , as were subsequent post hoc analyses (univariate and Bonferroni t-tests). Neuropsychological performance was significantly better as a function of DBS-CRS ratings, with Subgroup 1 > Subgroup 2 > Subgroup 3. This pattern was present for four of the cognitive domains  based on post hoc comparisons. For the Attention/Working Memory domain, performance was as follows: Subgroup 1 > (Subgroup 2 = Subgroup 3). These findings align with view that poorer DBS-CRS ratings are associated with worse cognitive performance across neuropsychological domains.A subsequent multivariate analysis of variance (MANOVA) examined the pattern of the neuropsychological domain scores associated with the DBS-CRS ratings. To maximize interpretative clarity, we created three Subgroups based on DBS-CRS ratings: (a) those with relatively good ratings (SD = 0.82) versus GPi  DBS , we combined them into a single group for follow-up analyses.We sought to uncover whether ratings based on the DBS-CRS were associated with improved DBS outcomes during the 6-month period following surgery. Of the 154 patients who underwent DBS, 38 received leads in the STN , 114 received leads in the GPi , and 2 received leads in the Pedunculopontine nucleus. Because the DBS-CRS score did not differ between patients who received STN , post-operative infection (N = 6), had bilateral DBS surgery within the 6-month period (N = 34), or surgery not involving the STN or GPI (N = 2). An additional 16 participants were missing all scores from the PDQ-39. This resulted in a final follow-up sample of 95 participants.Follow-up correlation and regression analyses focused on quality of life (PDQ-39) and mood, though additional motor and ADLs scores from the UPDRS were examined. Neuropsychological data was not available at this time interval. For these analyses, patients were excluded if they experienced an intra-operative adverse event , Cognitive , and Communication . Thus, higher cognitive risk was associated with worse quality of life post-surgery in three PDQ-39 domains. In additional correlational analyses (Spearman rho), higher cognitive risk (DBS-CRS) was significantly associated with worse post-DBS motor symptoms , and tended to be associated with worse ADLs post-surgery . Neither the BDI-II nor the AS demonstrated significant relationships with the DBS-CRS (p’s > 0.05).Results of bootstrapped hierarchical linear regressions, controlling for education, revealed that the DBS-CRS served as a significant predictor for three subscales from the PDQ-39: ADLs , were the most cited reasons for patients not proceeding to surgery and accounted for 57% of excluded cases. These findings align with a robust literature that cognitive concerns are the primary reason PD patients do not proceed to DBS surgery . In our What aspects of the neuropsychological exam contributed to clinical decision-making regarding DBS-CRS ratings? The strongest contributors, based on regression analyses, were delayed memory and executive function, with a weaker but significant influence from language and visuoperception domains. Indeed, 77.2% of the variance in the DBS-CRS scores were accounted for by cognitive performance, in conjunction with education and mood scores. We suspect that the remaining variance (22.8%) could be explained by non-cognitive factors not assessed in this study such as other medical conditions, cardiovascular risk factors, and frailty. Because this information was collected from the neuropsychological interview and the medical record review, the data could have possibly affected clinicians’ judgment.One question of interest was whether worse DBS-CRS ratings would primarily reflect overall cognitive decline or may also reflect an atypical neuropsychological profile . Based on patients with the highest DBS-CRS scores (4–5) having significantly worse, broad impairment across most domains, our data are more in alignment with the former view of overall cognitive decline. However, we cannot fully dismiss the importance of atypical profiles, as these profiles may raise concerns about other co-occurring disease entities. These cases tend to be rare during DBS screening at expert centers, but it is clinically salient and critically important to communicate to the interdisciplinary team when uncovered.cognitive risk pre-DBS surgery and aspects of quality of life following DBS surgery.A critical test of the utility of the DBS-CRS is whether this summary index would be associated with future adverse behaviors following DBS surgery. To address this point, we focused on quality of life and mood, as these measures provided a more patient centric view of outcome, rather than on cognition. Cognition scores were not available over the 6-month post-DBS surgery period. Indeed, we found that better DBS-CRS scores were linked to better ADLs, Cognition, and Communication scores on the PDQ-39 post-surgery. Moreover, we found that worse cognitive risk (DBS-CRS) was associated with worse motor scores and a trend for worse ADLs on the UPDRS. There was no relationship with mood. At least one prior study has reported that those with impaired cognitive performance did not exhibit improvements in quality of life after STN DBS in the same manner as those without cognitive deficits . To our Overall, while DRS-CRS serves as a helpful communication tool to other clinicians, there are limitations to its use. It is not intended to serve as a substitute for a comprehensive neuropsychological evaluation, which typically describes neuropsychological strengths and weaknesses and provides detailed recommendations beyond DBS suitability. In certain cases, those with poor cognitive performance, may be deemed adequate candidates for humanitarian reasons to optimize clinical care. That said, the DBS-CRS rating is an important communication tool that serves as one factor amongst many when assessing DBS candidacy.Our study had several limitations. First, the majority of DBS-CRS ratings were assigned by the same attending neuropsychologist in conjunction with fellows and trainees. Thus, the generalizability of our findings is uncertain because we do not know how individual clinical judgment skills would affect DBS-CRS score assignment. Thus, future research should examine the inter-rater reliability between different raters at various levels of training. Preliminary work by our group suggests convergence by the clinical team after 3–4 weeks of training , though this observation will need to be verified in more controlled settings. Generalizability of the scale’s use would also be improved with a more racially heterogenous sample. Another potential limitation is that the current study evaluated cognitive performance using theoretically determined domain classifications. Future research could use empirically-derived composite scores to predict DBS-CRS to further evaluate which cognitive impairments best predict the scores. Finally, future work should expand to examine the DBS-CRS’ role in predicting cognitive functioning post-DBS surgery and break down DBS candidates by target, as well as incorporate bilateral cases, to better understand individual differences between different DBS treatment regiments.Overall, the DBS-CRS in this single center cohort was useful in deciding which Fast Track candidates should move onto DBS surgery. The study revealed that cognitive performance involving delayed memory and executive functioning were the strongest predictors of the DBS-CRS. The score on the DBS-CRS predicted the post-DBS surgery quality of life, specifically the ADLs, Cognition, and Communication domains. Based the current study’s findings, we believe that that the DBS-CRS has the potential to improve the DBS screening process by providing a simple score to aid decision making in potential surgical candidates.jacobson@neurology.ufl.edu.”The datasets presented in this article are not readily available because “an inquiring party must submit a request to the UF INFORM database committee at the Norman Fixel Institute of Neurologic Diseases, and this request must be approved by the UF IRB.” Requests to access the datasets should be directed to “Chuck Jacobson, The studies involving human participants were reviewed and approved by University of Florida Institutional Review Board. The patients/participants provided their written informed consent to participate in this study.All authors listed have made a substantial, direct and intellectual contribution to the work, and approved it for publication.DB has received research grants, as PI or MPI, from the NIH , Parkinson’s Foundation, the McKnight Research Foundation, and the UF Foundation. MO serves as a consultant for the Parkinson’s Foundation, and has received research grants from NIH, Parkinson’s Foundation, the Michael J. Fox Foundation, the Parkinson Alliance, Smallwood Foundation, the Bachmann-Strauss Foundation, the Tourette Syndrome Association, and the UF Foundation. MO has received royalties for publications with Demos, Manson, Amazon, Smashwords, Books4Patients, Perseus, Robert Rose, Oxford, and Cambridge (movement disorders books). MO is an associate editor for New England Journal of Medicine Journal Watch Neurology. MO has participated in CME and educational activities on movement disorders sponsored by the Academy for Healthcare Learning, PeerView, Prime, QuantiaMD, WebMD/Medscape, Medicus, MedNet, Einstein, MedNet, Henry Stewart, American Academy of Neurology, Movement Disorders Society and by Vanderbilt University. The institution and not MO receives grants from Medtronic, Abbvie, Boston Scientific, Abbott, and Allergan and the PI has no financial interest in these grants. MO has participated as a site PI and/or co-I for several NIH, foundation, and industry sponsored trials over the years but has not received honoraria. Research projects at the University of Florida receive device and drug donations. KF reports grants from NIH, and other funding from Donnellan/Einstein/Merz Chair, during this study; grants and non-financial support from Medtronic, grants from St. Jude, Functional Neuromodulation, and Boston Scientific, and grants and other funding from Neuropace. Additionally, KF has a patent US 8295935 B2 issued for a DBS cranial lead fixation device. The remaining authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.


Background: The incidence of hospital-presenting self-harm peaks among young people, who most often engage in intentional drug overdose (IDO). The risk of self-harm repetition is high among young people and switching methods between self-harm episodes is common. However, little is known about their patterns of repetition and switching following IDO. This study aimed to investigate repeat self-harm and method-switching following hospital-presenting IDO among young people. Methods: Data from the National Self-Harm Registry Ireland on hospital-presenting self-harm by individuals aged 10–24 years during 2009–2018 were examined. Cox proportional hazards regression models with associated hazard ratios (HRs), survival curves and Poisson regression models with risk ratios (RRs), were used to examine risk factors for repetition and method-switching. Results: During 2009–2018, 16,800 young people presented following IDO. Within 12 months, 2136 young people repeated self-harm. Factors associated with repetition included being male , aged 10–17 years , consuming ≥ 50 tablets  and taking benzodiazepines  or antidepressants . The cumulative risk for switching method was 2.4% (95% CI: 2.2–2.7). Method-switching was most likely to occur for males  and for those who took illegal drugs . Conclusion: Young males are at increased risk of repeat self-harm and method-switching following IDO and the type and quantity of drugs taken are further indicators of risk. Interventions targeting IDO among young people are needed that ensure that mental health assessments are undertaken and which address access to drugs. The highest rates of self-harm  are consistently seen among young people, and several countries have reported increases in youth self-harm in recent years ,6,7,8,9.Switching methods between self-harm episodes is common , with apThe knowledge base regarding repeat self-harm and method-switching following IDO is limited and no known published study has examined the drug-related factors associated with repeat self-harm and method-switching among young people. This study aimed to investigate repeat self-harm and method-switching following hospital-presenting IDO among young people. The objectives were: (i) to establish self-harm methods used by young people during the study period, (ii) to identify the demographic, clinical and self-harm characteristics of repeat presentations following IDO among young people and (iii) to examine methods used in non-fatal repeat self-harm presentations, including method-switching, following IDO among young people.The data for this study were obtained from the National Self-Harm Registry Ireland (NSHRI). The NSHRI is a national surveillance system that monitors hospital-treated self-harm presentations to acute hospitals in the Republic of Ireland. We used data for the period 1 January 2007 to 31 December 2018—in line with the availability of data from all hospital emergency departments in Ireland. Self-harm is defined as ‘an act with non-fatal outcome in which an individual deliberately initiates a non-habitual behavior, that without intervention from others will cause self-harm or deliberately ingests a substance in excess of the prescribed or generally recognized therapeutic dosage and which is aimed at realizing changes that the person desires via the actual or expected physical consequences’ . InformaThe study dataset was restricted to persons whose index self-harm episode occurred between 1 January 2009 and 31 December 2018. Individuals who presented with self-harm between 1 January 2007 and 31 December 2008 were excluded, as were their subsequent episodes. This method was used to identify as accurately as possible all individuals whose first episode, of self-harm occurred within the study period between 2009 and 2018. Inception cohorts for examination of self-harm repetition have been delineated in similar previously conducted studies ,18,29.The data items examined for this study were: gender, age group (10–17 and 18–24 years), date of presentation, method(s) of self-harm, name and quantity of drugs taken, alcohol involvement, whether or not a mental health assessment was undertaken and recommended next care. Self-harm method was coded according to the ICD-10 codes for intentional injury or poisoning. Information on a maximum of five methods per presentation were recorded. Information pertaining to a maximum of 13 drugs taken in IDO was examined. The number of tablets taken in IDO reflects the total number of all tablets taken in an IDO presentation. Information on the drugs taken in IDO and the respective quantities are captured in the NSHRI via self-reported information from the patient, ambulance service records, hospital medical records and toxicology reports, if available.Drugs taken in IDO were classified according to the anatomic therapeutic chemical (ATC) classification system, the detail of which can be found in the Guidelines for ATC Classification and DDD Assignment . The ATCRepeat self-harm was defined as a re-presentation to a hospital emergency department for any method of self-harm within the study period. Repetition of non-fatal self-harm by the same individual was identified via a unique identifier generated by the NSHRI. Next repetition episode was included in the analyses, which were conducted according to persons rather than presentations. Individuals’ follow-up time periods ranged from 1 day to 9 years and the cumulative risk of repeated self-harm was estimated at 12 months following the index episode.p-value of < 0.2 according to a univariate analysis were subsequently included in the multivariate modeling [p-value of <0.2 in a univariate analysis were included in the multivariate modeling. Analyses were conducted using STATA 12 IC, StataCorp LLC, College Station, TX 77845-4512, USA.Kaplan–Meier survival analyses were used to estimate the cumulative risk of repeat self-harm following and index IDO episode. Cox proportional hazard regression models were fitted to examine candidate risk factors for repeat self-harm, according to hazard ratios (HRs). Univariate analysis was first performed to identify variables associated with repeat self-harm. Variables included in the Cox models were those which have previously been shown to be associated with repeat self-harm risk , in addimodeling . Poissonmodeling . SimilarThe reporting of this study conformed to the strengthening the reporting of observational studies in epidemiology (STROBE) statement: guidelines for reporting observational studies .During the study period there were 37,340 self-harm presentations made by young people, involving 26,085 individuals. Approximately two-thirds of presentations were made by females  or by individuals aged 18–24 years . Just over one-quarter (26.5%) of these presentations were for repeat episodes. The mean number of repeat presentations over the study period was higher for females than males  and for individuals aged 18–24, compared those aged 10–17 years . By the end of the study period the cumulative risk of presenting to hospital with repeat self-harm was 23.6% (95% CI 23.0–24.2). Within 12 months of follow-up, the cumulative risk was 13.9% (95% CI: 13.5–14.3). Intentional drug overdose and self-cutting was associated with the highest repetition risk , followed by self-cutting alone . IDO alone was associated with a significantly reduced risk of self-harm repetition compared to other methods, as shown in p = 0.002). Young people aged 18–24 years more often switched methods in their next repetition episode, compared to those aged 10–17 years . There were no significant differences in methods switched to according to the young person’s age.Of the 2136 repeat self-harm presentations made following IDO, most young people repeated using the same method . Using data on over 37,340 self-harm presentations by young people from a national registry, we have quantified the risk of repeat self-harm and method-switching among young people who presented with an index IDO episode. Within 12 months, the cumulative risk of repeat self-harm following IDO was 10% and factors associated with repetition included being male, aged 10–17 years, taking 50 or more tablets and taking benzodiazepines or antidepressant drugs in IDO. The risk of switching method at the next repeat episode was 2%, with most switching to self-cutting. Males and young people who took illegal drugs in IDO were most likely to engage in method-switching.The recent increases in self-harm incidence among young people are particularly concerning considering that suicide risk is markedly elevated following self-harm . It is iTo our knowledge, this is the first published study to identify drugs associated with repeat self-harm among young people. Between 66–82% of people of all ages who engage in IDO will do so using drugs that were prescribed to them ,44. HoweConsidering that young people are less likely to take their own prescribed medication in IDO ,45 and aSeveral studies have examined method-switching following self-harm ,24,29,58This is the first national study to examine repeat hospital-presenting self-harm and method-switching among young people following IDO, including over 37,000 self-harm presentations over a decade of observation. We used survival analyses to examine outcomes following IDO among young people. Analyses were confined to individuals with no self-harm presentations in the two years before the study period, to maximize the likelihood that first ever self-harm episodes were being examined. Several considerations must be accounted for when interpreting the study findings. It is possible that a small percentage of the identified inception cohort may have presented to hospital prior to 2007, therefore their episode of self-harm, recorded between 2009–2018, may not truly represent their first episode. Presentations to general practice only or self-harm episodes without presentation to healthcare services were excluded, thus limiting the generalizability of the findings to untreated self-harm within the community. Information on mental health history or psychiatric diagnoses are not recorded by the NSHRI, and so we were unable to adjust for these potentially important factors in our analyses. Furthermore, information recorded in the NSHRI is collected at the ED department and it is possible that some presentations could have resulted in death after presenting to the ED, which could not be accounted for. Information on drugs taken in IDO is collected via self-report by the presenting patient and this is supplemented by ambulance service records, hospital medical records and toxicology reports, where available. Finally, information on the source of tablets taken in IDO is not currently collected by the NSHRI and therefore it is unknown as to whether or not the individual was prescribed these drugs.This national study examined the risk of repeat self-harm following IDO in young people, with a particular focus on patterns of method-switching. We found that young males were at increased risk of both repetition following IDO and method-switching—often to more potentially lethal methods of self-harm. We also identified that drugs such as benzodiazepines and illegal drugs were associated with risk of repetition and switching of methods among young people. The established risk of repeat self-harm among young people highlights the importance of ensuring that mental health assessments are provided to young people who present to hospital following self-harm. Furthermore, we surmise that an important intervention target is addressing the availability of both prescribed and over-the-counter drugs to young people. In conclusion, assuring the provision of mental health assessments and regulating drug access are key action areas for the prevention of suicidal behavior among young people.


The objective of this analysis was to evaluate and report on the economic impact of implementing an integrated, quality, and operational improvement program on chronic obstructive pulmonary disease (COPD) care from acute through post-acute care settings. This initiative was established in a cohort of 12 hospitals in Alabama and sought to address COPD readmission through improved workflows pertaining to early diagnosis, efficient care transitions, and patient visibility across the entire care episode. Implementation of the initiative was influenced by lean principles, particularly cross-functional agreement of workflows to improve COPD care delivery and outcomes. A budget impact model was developed to calculate cost savings directly from objective data collected during this initiative. The model estimated payer annual savings over 5 years. Patients were classified for analysis based on whether or not they received noninvasive ventilation. Scenario analyses calculated savings for payers covering different COPD cohort sizes. The base case revealed annual per patient savings of $11,263 for patients treated through the quality improvement program versus traditional care. The model projected cumulative savings of $52 million over a 5-year period. Clinical incorporation of non-invasive ventilation (NIV) resulted in $20,535 annual savings per patient and projected $91 million over 5 years. We conclude that an integrated management program for COPD patients across the care continuum is associated with substantial cost savings and significantly reduced hospital readmissions. Chronic obstructive pulmonary disease (COPD) is the fourth leading cause of death in the world . A largeCommon COPD comorbidities, such as cardiovascular disease, heart failure, hypertension, and asthma, can mimic COPD symptoms. Studies have shown that adherence to Global Initiative for Chronic Obstructive Lung Disease (GOLD) guidelines for COPD diagnosis, especially the use of spirometry, has been suboptimal , 7. ConsA fragmented healthcare system and inefficient allocation of resources can lead to avoidable hospital costs amounting to as much as $44 billion per year in the United States . While tThere is a consensus among expert post-acute care professionals that a comprehensive end-to-end COPD care action plan can reduce COPD patient hospitalizations . EconomiIn Alabama, a large hospital was dissatisfied with the rate of readmissions for their COPD patients. The Vice President of Operations and Post-Acute Care services approached their home medical equipment provider  to discuss strategies to address this pain point. Given the possibility that other hospitals they partner with for home medical equipment services may also be experiencing high COPD readmissions, they approached their service network to determine if there were additional interested hospitals. The resulting joint venture included 12 Alabama hospitals, a recognized medical devices company, a third-party information technology specialist, and a home medical equipment (HME) provider.The objectives of the venture were to optimize COPD management and outcomes by integrating the patient care pathway across acute hospital care through post-acute care management. Cross-functional identification of gaps in the care continuum and care transitions provided opportunities to reorganize and integrate already existing workflows and treatment paradigms to create consistent COPD case management and reduce readmissions. This end-to-end process addressed four main pillars of COPD management: 1) immediate risk assessment and diagnosis of disease, 2) systematic use of evidence-based guidelines for diagnosis and treatment, 3) efficient transitions and improved visibility from acute through post-acute care, and 4) systematic collection and integration of post-acute patient data into the centralized patient electronic health record (EHR).This is not the first time the benefits of integrated care for COPD patients has been proposed , 5. SeveImplementing this pathway required cross-functional agreement and buy-in by all care providers and IT stakeholders. Importantly, this initiative was not designed to influence hospital policies, protocols, or physician behavior; all final decisions regarding procedures, tests, interventions, and therapies if needed, were made by the patient’s physician.Given previous evidence that a comprehensive, integrated and well-coordinated end-to-end patient management pathway may improve clinical outcomes while reducing cost  hospitalrd-party firm, IncreMedical®, engaged with hospital leadership and their HME partner through intensive cross-functional and cross-department  discovery, followed by mutual adoption and agreement, order set creation, implementation, post-discharge data collection and transmission that was entered by the post-acute respiratory therapists into the hospital EHR, and data aggregation and analysis based on event rates.See Patients were deemed eligible for this program when, upon arrival at the hospital they exhibited any respiratory symptoms  or if any respiratory concerns stated by the patient. In total, 1,931 patients were screened for COPD. From that screened cohort, 53.5%  were diagnosed with COPD. Identification of previously undiagnosed COPD in patients with related co-morbidities, including, but not limited to, hypertension, pneumonia, heart failure, asthma, obesity, and sleep disturbances , 17. TheParticipating care providers had access to order sets created specifically by cross-functional teams during this initiative to support patient care covering, diagnostic laboratory tests, suggested consults, medications and other interventions, psychosocial support, and post-discharge transitioning, monitoring, and data reporting. Physician judgement was not influenced nor overridden to serve the initiative. For this initiative, all patients were discharged to home care and post-acute services (PAC) services were provided by the joint partner HME provider company  after the patient was discharged from the hospital and returned home. While providing home care, all patient data was collected by the HME RT on a secure mobile device, securely transmitted to and stored on a protected, third-party platform , and then transferred into the hospital EHR.A payer-perspective budget impact model was constructed using Microsoft® Excel. The budget impact model directly compared objective, outcome-driven cost savings associated with ICP implementation versus standard COPD care . The model simulates annual, as well as 5-year cumulative, savings associated with all-cause, rolling 90-day hospitalizations.Deidentified patient outcome event rate data from the ICP was made available for the creation of the budget impact model. All patient event rates were derived from this quality improvement initiative exploring the clinical and economic outcomes of an end-to-end patient management program see .See Hospital admission costs were obtained from previously published data . ReimburAnnual hospitalizations were calculated from the initial number of patients enrolled in the ICP program (year 0) or the number of surviving patients from the previous year (years 1–5) and hospitalization event frequency (Pre-ICP (standard care), ICP, or +NIV). The number of surviving patients in year 1 for each comparator was based on initial numbers of patients enrolled in the ICP x 1-year mortality rate. The number of surviving patients in subsequent years was calculated by applying the 1-year mortality rate to the number of patients surviving the preceding year. This approach led to years 2–5 patient populations. Total annual cost was calculated as the number of hospitalizations x reimbursement per hospitalization. See Tables The base case was defined as 1,033 patients diagnosed with COPD. Scenarios examined cumulative savings during years 0 to 5 for payers covering 5,000, 10,000, 25,000, and 50,000 patients enrolled in the ICP.Probabilistic sensitivity analysis was performed for individually varying model parameters using reasonable lower and upper bounds for each parameter. Normal distribution was applied to readmission and hospitalization rates. Lower and upper bounds for costs and reimbursements were based on published values. When appropriate parameters were not found, model inputs were varied by ±50% to capture the broad variance of several parameters such as hospital costs. Sensitivity analysis was performed using @RISK software  in the advanced sensitivity analysis mode.Implementing this initiative across multiple hospitals was considered an initial point of success. However, the question remained, “Can integrated care for COPD patients yield improved clinical and economic outcomes?”. To explore the effect on the Integrated Care Pathway (ICP), we retrospectively analyzed 30-day COPD readmissions, and 90-day all-cause hospitalizations and modeled economic outcomes based on CMS-published values for hospitalization and readmission costs and reimbursements. Over 9 months lowered both 30-day readmissions and rolling 90-day all-cause hospitalizations. For patients receiving ICP care, 30-day readmissions declined by 57%, and 90-day all-cause hospitalizations declined by 36%. Calculated total direct cost savings per patient per year (PPPY) for the hospital were $29,044 and $21,470 for years one and five, respectively. Cumulative direct savings projected over five years of ICP implementation was $129 million. Outcomes of patients who were prescribed NIV by their physician as part of their ICP care (ICP+NIV) were also analyzed. This subset of patients realized a 71% reduction in 30-day readmissions and an 85% reduction in 90-day all-cause hospitalizations. These outcomes were associated with year-one and year-five cost savings of $51,239 and $35,954 PPPY, respectively, compared to traditional care. Projected cumulative savings after five years exceeded $200 million.Implementation of the ICP reduced rolling 90-day all-cause hospitalizations for 1,033 patients with COPD. Hospitalization rates decreased significantly (p < 0.0001) from 61% Pre-ICP (standard care) to 39% during the ICP program and were associated with cost savings of $11,263 per patient per year PPPY,  in the fScenario analysis of economic outcomes associated with ICP implementation compared to Pre-ICP standard care COPD care was undertaken to investigate the effect of different population sizes  on annual savings over time. Results from these analyses indicate that cost savings were not attenuated by increasing populations. See .Probabilistic sensitivity analysis (PSA) was conducted to determine which of the model’s parameters have the largest effect on model outcomes , specifithe continuum of patient centered services organized as a care delivery value chain for patients with chronic conditions with the goal of achieving the optimal daily functioning and health status for the individual patient and to achieve and maintain the individual’s independence and functioning in the community”  codes E0464/E0471, E0466]. Outcome rates related to the use of AVAPS-AE NIV may not reflect all home NIV devices. Additionally, the model does not address any budget impact to the HME. Lastly, the model did not fully account for differences in outcomes due to seasonality of COPD symptoms. Still, the estimated savings suggest important benefits associated with the implementation of an end-to-end patient management program for COPD patients. Future studies are needed to better understand how variations in geography, program characteristics, and treatment devices, such as NIV, affect cost savings across a range of payer systems.This analysis provides evidence for the economic benefits of integrated care workflows for COPD patients. The results presented above indicate that lean-like workflow change strategies should emphasize rapid, evidence-based assessment and diagnosis, efficient care transitions, provider alignment, respiratory therapist-led follow-up care, continuous data collection and centralization, and objective performance analysis across the care continuum. Estimated savings were primarily driven by a reduction in all-cause 90-day hospitalizations. This initiative also provides support for post-acute care adoption of EHR systems through its data transmission, centralization and aggregation paradigm. Incorporation of an integrated care model that promotes early, comprehensive diagnosis and efficient transitions of care can reduce hospitalizations and potentially reduce costs for managing COPD patients.


There is a scarcity of evidence on subjectively reported cognitive difficulties in individuals at ultra-high risk (UHR) for psychosis and whether these self-perceived cognitive difficulties may relate to objective cognitive deficits, psychopathology, functioning, and adherence to cognitive remediation (CR). Secondary, exploratory analyses to a randomized, clinical trial were conducted with 52 UHR individuals receiving a CR intervention. Participants completed the Measure of Insight into Cognition—Self Report (MIC-SR), a measure of daily life cognitive difficulties within the domains of attention, memory, and executive functions along with measures of neuropsychological test performance, psychopathology, functioning, and quality of life. Our study found participants with and without objectively defined cognitive deficits reported self-perceived cognitive deficits of the same magnitude. No significant relationship was revealed between self-perceived and objectively measured neurocognitive deficits. Self-perceived cognitive deficits associated with attenuated psychotic symptoms, overall functioning, and quality of life, but not with adherence to, or neurocognitive benefits from, a CR intervention. Our findings indicate that UHR individuals may overestimate their cognitive difficulties, and higher levels of self-perceived cognitive deficits may relate to poor functioning. If replicated, this warrants a need for both subjective and objective cognitive assessment in at-risk populations as this may guide psychoeducational approaches and pro-functional interventions. Self-perceived cognitive impairments do not seem to directly influence CR adherence and outcome in UHR states. Further studies are needed on potential mediator between self-perceived cognitive deficits and functioning and quality of life. Meta-analytical evidence has revealed moderate overall impairments in neurocognition in UHR compared to healthy controls (Hedges’ g = −0.344)7. Additionally, the severity of neurocognitive impairments are found to be intermediate between that of patients with schizophrenia and healthy controls7. Neurocognitive deficits in UHR have been implicated in psychosis development8 and poor functional outcome10.Individuals at ultra-high risk (UHR) for psychosis are characterized by persistent cognitive deficits within both global and specific cognitive domains14. To the best of our knowledge, no previous study has, however, investigated whether this discrepancy between objective and subjective cognitive deficits also apply to the UHR state of psychosis.As performance-based cognitive testing is the preferred assessment measure employed in psychosis research, few studies have elucidated on patient’s self-perceived cognitive impairments: in general, the studies do not find an association between objective and subjective neurocognitive deficits in patients with established psychosis21. The existing, albeit small, literature does not indicate awareness of cognitive deficits is a pre-requisite for positive outcome of a cognitive remediation intervention in schizophrenia14. While considerably less studied, preliminary data indicate efficacy of cognitive remediation in the UHR state of psychosis22, but it remains, however, unclear whether self-perceived cognitive deficits may influence adherence to cognitive remediation in the UHR population. That is, whether higher levels of subjectively reported cognitive deficits will relate to UHR individuals adhering to and engaging in a cognitive remediation intervention.Cognitive remediation is one of the most promising interventions to alleviate cognitive deficits, with proven effectiveness in first-episode and more chronic states of psychosis with small to medium effect sizes on cognitive and functional outcomes23 on cognitive remediation in the UHR population, we conducted secondary, exploratory analyses aimed at investigating the relationship between self-perceived neurocognitive deficits and objective cognitive performance, psychopathology, functioning, and adherence to a cognitive remediation intervention. The study addressed the following questions: (1) Is there a relationship between subjective and objective cognitive deficits in UHR individuals? (2) Is there an association between subjectively reported cognitive deficits and clinical symptoms and functioning/quality of life? (3) Do self-perceived cognitive deficits associate with adherence to and benefit from a cognitive remediation intervention?By using data from the hitherto largest randomized, clinical trial n = 8), or lack of time to complete MIC-SR (n = 13). Analyses revealed that the participants completing the MIC-SR did not differ from the ones not completing the MIC-SR on any of the demographic or clinical variables. Twenty-nine (55.8%) of the participants were females, and they had a mean age of 23.98 (SD 4.6) and an average of 14.29 (SD 2.4) years of education. The participants mainly fulfilled the high-risk criteria of APS   completed the MIC-SR. Reasons for not completing the MIC-SR were: drop-out before starting the cognitive remediation intervention  and a MIC-SR average frequency score of 1.9 (.6) indicating that the UHR individuals reported experiencing cognitive impairments more than once a week. Participants displaying objective cognitive deficits had a mean MIC-SR total score of 19.9 (SD 7.7) and a MIC-SR average frequency score of 1.9 (SD .60). Participants not displaying cognitive deficits had a mean MIC-SR total score of 23.4 (SD 7.1) and a MIC-SR average frequency of 1.7 (SD = .6).Participants attended an average of 10.9 (SD = 7.6) out of the total 20 sessions of neuro- and social cognitive remediation and had an average of 11.9 (SD = 16.4) h of neurocognitive training (including both group- and homebased training).p = 0.11). Neither did the Spearman’s correlational analyses reveal a significant baseline correlation between the MIC-SR total score and the BACS composite score .The one-way ANOVA revealed that the 32 UHR individuals exhibiting objective cognitive deficits did not differ from the 20 participants not displaying objective cognitive deficits on the MIC-SR total score  were significantly related. Furthermore, our study found UHR individuals to report self-perceived cognitive deficits of a magnitude exceeding that of patients with established psychosis 14. This is rather surprising as UHR individuals in general display performance-based cognitive deficits of a smaller magnitude than patients with schizophrenia7. Additionally, a little over one-third (39%) of our sample was not found to be cognitively impaired on the performance-based neurocognition measure but still reported self-perceived cognitive impairments in the same range as those with established cognitive deficits. This contrasts some studies in schizophrenia finding that a substantial number of patients do not have an awareness of cognitive deficits even in the presence of objectively measured deficits30. This discrepancy indicates that while patients with schizophrenia may underestimate their level of cognitive deficits, UHR individuals may overestimate their cognitive difficulties. Speculating, this could potentially cause UHR individuals to experience defeatist beliefs and lead to daily-life functional impairments32. Adding weight to this hypothesis is our cross-sectional finding of self-perceived cognitive difficulties being adversely associated with overall functioning and quality of life explaining 7% and 22% of the variance on these functioning measures, respectively. This warrants a need for future studies investigating whether potential mediators such as defeatist beliefs or perceived competence may mediate the relationship between self-perceived cognitive impairments and functional decrements. Furthermore, it suggests a need for assessing both self-perceived and actual cognitive deficits in UHR groups. In cases of discrepancy between these domains, psychoeducation on cognitive deficits and a focus on cognitive strengths and resilience, could be instituted. While this is, to our knowledge, the first study to elucidate on subjective neurocognitive deficits in a UHR population, a previous study has assessed self-perceived social cognitive impairments in a UHR sample finding a correlation between subjectively experienced cognitive deficits and decrements in role functioning33 which further supports the existence of a link between self-perceived cognitive deficits and functioning in UHR.In keeping with previous literature in psychosis30. These findings from schizophrenia samples have indicated that those with higher depressive scores may have greater awareness of cognitive dysfunctions which echoes reports of correlations between depressive symptoms and better insight into psychosis34. Findings are, however, mixed, as another study reported less severe depressive symptoms in schizophrenia samples with better insight into neurocognitive deficits13. Our finding of an association between self-perceived cognitive impairments and attenuated psychotic symptoms are in accordance with a previous report from a UHR sample, albeit this relationship was observed between self-perceived social cognitive deficits and attenuated psychotic symptoms33. It does, however, contrasts with the essentially weak relationship found between performance-based neurocognition and attenuated- and fully psychotic symptoms37. Hypothesizing, our finding may suggest that some UHR individuals may be inclined to perceive daily life cognitive impairments in areas such as attention, memory, and problem-solving influence level of subthreshold psychotic symptoms (which includes disorganization), or vice versa.Regarding the relationship between self-perceived cognitive deficits and psychopathology, we found a significant association with attenuated psychotic symptoms, but not depressive or negative symptoms. This contrast findings from patients with schizophrenia of significant associations between self-perceived and clinician-rated cognitive impairments and depressive, but not positive (or negative) symptoms13, or cognitive benefits14, although it may impact engagement in treatment via its interaction with perceived competency, a motivational construct that promotes treatment engagement14.Lastly, this study aimed to elucidate on the relationship between baseline subjective cognitive deficits and adherence to, and benefits from, a cognitive remediation intervention in UHR. We did not find that self-perceived cognitive difficulties were significantly associated with attendance, adherence, or engagement in a cognitive remediation intervention. Neither did it significantly associate with change scores on the global neurocognitive outcome. In previous reports from patients with schizophrenia, poor insight into neurocognitive deficits has not been adversely related to cognitive remediation attendance, treatment satisfactionN = 52). Furthermore, the RCT study was not designed, nor potentially adequately powered, to address the current research question, which warrants a need for future well-powered studies investigating self-perceived cognitive deficits in response to a cognitive remediation intervention in UHR states. Finally, the study enrolled adults at UHR for psychosis, and while this is similar to other large-scale UHR research studies38 the age range is somewhat older than many other UHR studies43, which may limit the generalizability of the findings to the entire UHR population.While being the hitherto largest RCT on cognitive remediation in the UHR population, our study is limited by a relatively small sample completing the MIC-SR  or to treatment as usual (TAU). The cognitive remediation intervention comprised 2 h of group training  once a week for a total of 20 weeks. The cognitive remediation targeted both neuro- and social-cognition using the manualized, evidence-based treatments; the Neuropsychological Educational Approach to Cognitive Remediation (NEAR)45 and the Social Cognition and Interaction Training (SCIT) manual46. Supplementary to the group training, the participants received 12 individual sessions to personalize and maximize the transfer of the effect of the cognitive training to the participants’ daily lives. In addition, participants were encouraged to conduct a minimum of 1-h weekly of home-based neurocognitive training. The neurocognitive training was scaled to comprise 40 h of neurocognitive remediation, expecting that each participant attended the 20-group sessions and did the recommended 1-h weekly of home-based training.A detailed description of the original study can be found in ref. The study protocol was approved by the Committee on Health Research Ethics of the Capital Region Denmark (study: H-6-2013-015). All participants provided written informed consent prior to inclusion in the study. Trial registration ClinicalTrial.gov identifier: NCT02098408.47: attenuated psychotic symptom group; brief limited intermittent psychotic symptoms group; and/or trait and vulnerability group along with a significant drop in functioning or sustained low functioning for the past year.The sample consisted of 146 help-seeking individuals aged 18–40 years, who met one or more UHR criteria according to the Comprehensive Assessment of At-Risk Mental States48: Vocabulary, Similarities, Block Design, and Matrix Reasoning.The demographic information assessed in the study comprised age, years of education, and estimation of current IQ, with the latter assessed using four subtests from the Wechsler Adult Intelligence Scale - Third Edition (WAIS-III)49 was used to assess self-perceived cognitive impairments. The MIC-SR comprises 12 items on daily life difficulties with memory, attention, and problem solving. Each of the 12 items are given a score of 0–3 corresponding to experiencing cognitive difficulties “never” (0), “once a week or less” (1), “twice a week” (2), or “almost daily” (3). A total score can be extracted summing the ranges from 0 to 36. An average frequency score can be computed dividing the total score by 12. The MIC-SR has proven reliability and validity in patients with schizophrenia49.The Measure of Insight into Cognition—Self Report (MIC-SR)50. The BACS composite score derives from six subtests of the domains of verbal learning and memory, speed of processing and executive functions.Performance-based cognition was indexed with the Brief Assessment of Cognition in Schizophrenia (BACS) battery52; the Scale for the Assessment of Negative Symptoms (SANS)53 yielding the level of negative symptoms using the SANS global score; and the Montgomery-Åsberg Depression Rating Scale (MADRS)54 yielding level of depressive symptoms. Functioning was measured with two instruments capturing different aspects of functioning: Overall functioning was measured using the Personal and Social Performance Scale (PSP)55. This is a composite measure of functioning in the areas of occupational functioning, social functioning, and self-care. Subjective quality of life was reported with the Assessment of Quality of Life (AQoL-8D)56. The clinical assessors were all psychologists and medical doctors, that had received extensive training in using the instruments and conducted regular inter-rater reliability ratings on selected outcomes. Cognitive tests were conducted by psychologist students that had received comprehensive training and were supervised regularly by a senior psychologist.Symptoms were assessed with three instruments; the CAARMS, providing a level of attenuated psychotic symptom, by weighing the intensity of symptom scores by their frequency to form a CAARMS composite score12. Univariate linear regression analyses were run to investigate the association between the dependent variable of MIC-SR and the independent variables of clinical symptoms  and functioning (PSP and AQoL-8D). Bivariate correlations, using a Spearman’s correlation coefficient with a two-tailed significance test, were run to investigate the correlations between MIC-SR total score and BACS composite score at baseline and as difference score pre/post-treatment along with indices of adherence to the cognitive remediation intervention. Significance levels were set to p < 0.05.Analyses were performed using SPSS version 25.0. Baseline descriptive statistics were reported by means and standard deviations. One-way analyses of variance (ANOVA) was used to compare the group displaying performance-based cognitive deficits with the group that did not on the MIC-SR. Stratification of the sample was based on whether or not the participants displayed a BACS composite score of ≤−1.35, as previous findings indicate this to be a relevant cut-off to determine borderline to impaired cognitionFurther information on experimental design is available in the Reporting Summary Checklist


Community-based diabetes management is known to be an important strategy for global diabetes control. In China, community-based diabetes management care, including regular blood glucose tests and guidance on medicine use, dietary control, and physical exercise provided by primary health institutions (PHIs), as one of the key contents of the national essential public health services (EPHS), was implemented since 2009 when the new round of health system reform was initiated. This study aimed to investigate the utilization of community-based diabetes management care services, and explore the factors influencing utilization from both patients’ and providers’ points of view.In total, 2520 type-2 diabetes mellitus (DM) patients registered for EPHS were selected from 63 PHIs in eight counties of Shandong province, China, using multi-stage stratified sampling. Of those, 2166 patients (response rate: 85.4%) completed face-to-face structured questionnaires on their utilization of community-based diabetes management care services. Further, 63 PHIs were surveyed on diabetes care delivery, and 444 primary healthcare providers were purposively sampled from those PHIs to measure their knowledge of diabetes management care delivery, using a self-developed questionnaire. Descriptive statistics were used to analyze the delivery and utilization of diabetes management care services. Multilevel logistic regression models were used to analyze the factors associated with patients’ utilization of diabetes management services.All 63 PHIs reported that all the required four diabetes management services were provided through EPHS. However, only 49.6% of the patients reported they fully used these services, with no statistically significant difference between urban and rural patients. Patients who had higher knowledge of diabetes and better self-efficacy in controlling the condition, were more likely to fully utilize diabetes management care. A larger number of PHI health staff per 1000 population was associated with better utilization of care.Although community-based diabetes management services are well available to Chinese DM patients under the framework of EPHS, the actual utilization of diabetes management services among the patients was poor. The size of the PHI workforce, patients’ knowledge and self-efficacy in controlling diabetes, were important predictors of utilization, and could be enhanced to improve control of diabetes. Diabetes mellitus (DM) has become one of the most common non-communicable diseases globally and is one of the most challenging public health issues . The IntGlobally, community-based diabetes management, although varying in approach under different health systems –10, is aIn April 2009, China initiated its new round of health system reform. The equalization of essential public health services (EPHS), as one of five key reform components, is realized through 11 community-based health services, including the provision of healthcare services for diabetes patients. To qualify for care, patients should be aged 35 years or older, and have a diagnosis of type-2 DM. These broad criteria allow for the enrolment of as many patients as possible. According to national guidelines for the implementation of EPHS, community-based diabetes management services mainly include regular blood glucose tests and guidance on medicine use, daily dietary control, and physical exercise. Primary health institutions (PHIs), which include village clinics (VCs) and township health centers (THCs) in rural counties, and community health centers and stations (CHCs and CHSs) in urban areas, should provide these services free of charge to all included DM patients at least once a quarter by appointments or home visits.Despite the numerous benefits of community-based diabetes management on the control of diabetes, and the increasing availability of guidelines and standards for diabetes management globally, studies have consistently found a big difference between recommended services and those patients actually utilized in nearly all countries, especially in low- and middle-income countries –17. In CEarlier studies focused on the utilization of diabetes management services among DM patients in rural China –20, and This was a cross-sectional study conducted in Shandong province in eastern China. The province contains 17 prefectures and 140 counties or districts, with a population of nearly 99 million (7.2% of mainland China) in 2016, comprising an urban population of 49 million and a rural population of 50 million people, ranking third on population size in the country. In 2016, Shandong’s gross domestic product (GDP) per capita was 67,706 Yuan . There were an estimated 980,000 type-2 DM patients in the province  in 2013 . Further. First, four representative prefectures were selected based on their geographic location  and economic development status within the province. Three urban subdistricts and three rural towns were randomly selected from the four prefectures. Three communities from each subdistrict and three villages from each town were randomly selected. Finally, 35 type-2 DM patients were randomly recruited from each selected community and village, with a total of 2520 patients selected for participation. The inclusion criteria were registration on NCDMS, diagnosis of type-2 DM based on WHO criteria for more than 6 months [We employed multi-stage, stratified, randomized sampling to select patients registered in the EPHS Non-communicable Disease Management System (NCDMS) in Shandong. A flowchart of the sampling process is provided in Fig. 16 months , aged unCommunity-based diabetes management services for patients in the 72 selected communities were provided through 63 PHIs, including 8 township-level PHIs and 55 village-level PHIs. Health workers in these PHIs were purposively sampled to investigate their capacity to deliver the required services, as per EPHS guidelines. In general, the health staff in township-level PHIs comprised doctors, nurses, public health workers and a small number of pharmacists and medical technicians, with the total number of medical workers in each facility ranging from 50 to 100. The health staff in village-level PHIs consisted of a general practitioner (GP) or village doctor, and a small number of medical assistants, with the total number of medical workers in each facility ranging from one to five. We used different purposive sampling methods to select the participants from these two types of PHIs, mindful of the difference in the number of health workers between them. We selected five diabetes endocrinologists or GPs, five diabetes nurses and five diabetes public health workers from each township-level PHI. In village-level PHI, all health staff were invited to participate this study. For inclusion, health staff had to be working in PHIs, contracted to provide diabetes management care, and had to have more than 6 months’ experience in providing diabetes management care.Data collection was conducted from August to October 2017. All selected patients were invited to complete a structured face-to-face questionnaire. The questionnaire mainly asked about the patient’s basic demographics , health status (duration of diagnosis), knowledge of diabetes, self-efficacy in their control of diabetes, and their utilization of community-based diabetes management care in EPHS. Patients’ knowledge on diabetes was measured using a self-designed questionnaire comprising 16 items with reference to Chinese guidelines for type-2 diabetes . The fulSixty-three PHIs were surveyed using self-administered questionnaires, completed by institutional heads, on diabetes care delivery, including the delivery of EPHS-mandated diabetes management services – regular blood glucose tests, along with guidance on medicine use, dietary control, and physical exercise – number of medical staff members and number of type-2 DM patients registered for diabetes management. Selected heath staff at these PHIs were invited to complete a structured self-administered questionnaire assessing their knowledge of diabetes management care delivery. The questionnaire for the assessment of diabetes management knowledge was self-designed and comprised 22 items with reference to Chinese guidelines for type-2 diabetes . The fulAll data collectors were rigorously trained and appropriately qualified for questionnaire delivery, and quality supervisors reviewed all completed questionnaires after each interview.Patients’ utilization of community-based diabetes management care was assessed using self-reports on EPHS services received, in terms of both contents and quantity. Four self-report questions were for this purpose: “How often have you utilized nutrition guidance from local PHIs in the past year?”; “How often have you utilized physical exercise guidance from local PHIs in the past year?”; “How often have you utilized medication guidance from local PHIs in the past year?”; and, “How often has your blood glucose been tested by local PHIs in the past year?” Based on EPHS criteria for diabetes management care, patients’ utilization of community-based diabetes management services was classified as fully or partially utilized. Patients who reported having utilized all recommended services at least once a quarter were considered to have fully utilized the services, while the remainder were considered to have partially utilized the services.Individual-level variables included residence , gender , age (< 65 or ≥ 65 years), household income level , and duration of diagnosis . These variables were processed as control variables in the analysis. Individual-level variables also included patients’ knowledge of diabetes and self-efficacy in control of diabetes. Patients received one point for each correct answer to the items in the diabetic knowledge questionnaire, with the total score ranging from 0 to 16, and a higher score indicating a higher knowledge level. Response to each item of DES-SF was rated on a five-point Likert scale . Self-efficacy scores ranged from 8 to 40, with a higher score indicating higher self-efficacy.Three provider variables at community level were also included in the analysis: types of PHIs providing diabetes management care, classified as township-level and village-level PHIs, with former including CHCs in the urban areas and THCs in the rural areas and the later including CHSs in urban areas and VCs in rural area; the ratio of PHI medical staff to the total population served by each institution in 2016, gauging the strength of health workforce at community level; and providers’ knowledge of diabetes management services delivery, revealing their capacity to provide appropriate care. Health workers received one point for each correct answer in the diabetic knowledge questionnaire; the total score ranged from 0 to 22, with a higher score indicating a higher knowledge level. The mean scores were used to measure providers’ knowledge on diabetes management at community level.Descriptive statistics were used to describe the characteristics of the participants and the delivery and utilization of community-based diabetes management services. Chi-squared tests were performed to determine the differences in individual- and community-level variables between urban and rural areas. Two-level logistic regression models were conducted to analyze the effects of individual- and community-level variables on patients’ utilization of community-based diabetes management care in EPHS, adjusting for all variables as fixed effects and allowing for heterogeneity between communities. A series of five models was performed with Model 1 as a null model containing no explanatory variables. Intra-class correlation coefficient (ICC) was computed to examine the necessity of fitting two-level models. Model 2 included all the control variables at individual level. Model 3 and Model 4 added individual- and community-level variables, respectively, into Model 2. Model 5 added both individual- and community-level variables into Model 2. Comparing Models 3 through 5, the impacts of individual- and community-level variables on patients’ utilization of diabetes management care after controlling for each other were assessed. All data analyses were conducted using STATA version 15.0.P = 0.17). The mean number of health workers per 1000 population served by PHIs was 1.46 (SD: 0.92), with no significant difference in the health workforce between urban and rural institutions . Providers’ mean diabetes knowledge score was 15.1 (SD: 1.1). There was no significant difference in diabetes knowledge between urban and rural health workers . All participating PHIs, regardless of location, had reported providing all the diabetes management services required by EPHS for registered DM patients  were village-level PHIs, with no significant difference in the types of PHIs between urban and rural areas . With respect to duration of diabetes, 38.5% patients had been diagnosed within 5 years, 31.4% had a duration of 5 ~ 10 years, and 30.1% had a duration of more than 10 years. Urban patients had a longer duration than rural patients (P < 0.01).Among 2166 participants, the majority were female (65.4%). Mean age was 63.4 years, with 49.9% of the participants older than 65 years. The median annual household income per capita was 6000 Yuan (around 895.5 US$). Patients in urban communities had higher household income levels than those in rural areas (P < 0.01). The mean score of self-efficacy in controlling diabetes was 32.0 (SD: 5.0). No statistically significant difference in self-efficacy was observed between urban and rural patients  . Urban patients scored higher than rural patients . For each service, 85.6% patients reported having fully utilized blood glucose tests, 69.7% dietary control instruction, 66.0% physical exercise instruction, and 65.7% medicine use guide. A higher proportion of rural patients reported having fully utilized blood glucose tests  and dietary control instruction  than urban patients  and higher self-efficacy in charge of diabetes  were more likely to fully utilize community-based diabetes management care. The results were relatively constant even after including community-level variables (Model 5).In Model 3, type-2 DM patients who had better diabetes knowledge . The types of providers and providers’ knowledge regarding diabetes management care delivery were not associated with utilization. After including individual-level factors, the influence of the strength of PHI health workforce remained unchanged (Model 5), though the exact value of OR and CI changed slightly . Furthermore, from Models 2 to 5, the variance explained by community-level variables decreased by 19.4%, which implied that these variables had good explanatory power for the variance in patients’ utilization of community-based diabetes management care.In Model 4, the larger number of healthcare providers per 1000 population serviced by the PHIs at community level was associated with higher proportion of the utilization of diabetes management care in EPHS  due to the smaller sample size, though the difference between the town-ship levels or village-levels PHIs were identified. Finally, this study selected Shandong as the sample setting for the analysis of the contributors to the gap between the delivery and utilization of community-based diabetes management services. While Shandong epitomizes China in terms of population and level of economic development, the issue of representation was not thoroughly considered. A larger sample size should be used in future studies to monitor and evaluate the progress of community-based diabetes management care in China.Although the community-based diabetes management services were found be well available in PHIs for Chinese DM patients under the framework of EPHS, our findings show the actual utilization of these services was poor among the patients. Patients’ utilization of diabetes management care depended on both provider- and patient-related factors, including the strength of health workforce in PHIs at community level, and patients’ knowledge of diabetes and self-efficacy to control diabetes at individual level. For developing the community-based care management in China, our study highlights the continuing need for human resource development in PHIs to improve the utilization of services. At the same time, patients’ knowledge and self-efficacy were positively associated with their acceptance and utilization of services. Strengthening health education and promotion of diabetes management services among DM patients may improve their willingness to utilize such care.Additional file 1. Text of the Diabetes Knowledge Questionnaire for Patients.Additional file 2. Text of the Diabetes Knowledge Questionnaire for diabetes management services delivery.