Systematic review of pathways to care in the U.S. for Black individuals with early psychosis

The pathway to receiving specialty care for first episode psychosis (FEP) among Black youth in the US has received little attention despite documented challenges that negatively impact engagement in care and clinical outcomes. We conducted a systematic review of US-based research, reporting findings related to the pathway experiences of Black individuals with FEP and their family members. A systematic search of PubMed, PsycInfo, and Embase/Medline was performed with no date restrictions up to April 2021. Included studies had samples with at least 75% Black individuals and/or their family members or explicitly examined racial differences. Of the 80 abstracts screened, 28 peer-reviewed articles met the inclusion criteria. Studies were categorized into three categories: premordid and prodromal phase, help-seeking experiences, and the duration of untreated psychosis (DUP). Compounding factors such as trauma, substance use, and structural barriers that occur during the premorbid and prodromal contribute to delays in treatment initiation and highlight the limited use of services for traumatic childhood experiences (e.g., sexual abuse). Studies focused on help-seeking experiences demonstrated the limited use of mental health services and the potentially traumatic entry to services (e.g., law enforcement), which is associated with a longer DUP. Although the majority of studies focused on help-seeking experiences and predictors of DUP, findings suggests that for Black populations, there is a link between trauma and substance use in the pathway to care that impacts the severity of symptoms, initiation of treatment, and DUP. The present review also identifies the need for more representative studies of Black individuals with FEP.

P068 Abstract tin soldiers Global FOP patient search

While looking for one, you may find another: Tin Soldiers and the search for undiagnosed individuals with Fibrodysplasia Ossificans Progressiva (FOP) Background FOP is an ultra-rare condition where heterozygous, gain-of-function missense mutations in the ACVR1 gene result in progressive heterotopic bone formation in ligaments, tendons and muscles and result in severe disability.1 FOP has an estimated incidence of 0.6–1.3 per million individuals 2,3 suggesting that currently there are ∼8000 patients living with FOP worldwide, however only about 900 patients are currently diagnosed worldwide The diagnosis is made clinically by identification of typical malformations of the great toes as well as inflammatory swellings (flare-ups) that result in progressive and episodic ossification of soft connective tissues, often triggered by trauma.4 Muscle biopsies, though contraindicated, are frequently performed mistakenly during the course of diagnosis, as FOP is not a well-known condition. There is an urgent need to identify individuals with FOP across the globe in order to avoid harmful biopsies and to provide a pathway to care for patients with FOP. Tin Soldiers is a global FOP patient search program utilizing multimedia campaigns aimed at educating and bringing attention to FOP, to find individuals across the globe and to connect them to pathways of care. The mission is to identify every person with FOP who is currently undiagnosed, as well as to deliver education and support to those living with a diagnosis, but not connected to support networks. Once found, all people living with FOP are connected to pathways to care. The aim is to describe the Tin Soldiers global FOP patient search program approach and report early results of the program. Methods Tin Soldiers creates multimedia campaigns to create awareness and to educate medical professionals, healthcare workers, general public and local communities on FOP. At the heart of the communication program is story-telling of people living with FOP, from a feature-length documentary to public service announcements, animated short films and an 8-part Global Master Series—all designed to bring attention to FOP in order to find patients and provide a pathway to diagnosis and care. Importantly diagnosis is not the end of the journey, it’s just the beginning. Results Since official operations commenced in March 2020, Tin Soldiers has trained 535 medical professionals; established an African Clinicians Council of 10 doctors with the intention of mentoring others across the continent; increased the number of African patients with a diagnosis from 25 patients in December 2020–32 in April 2021. Connected previously diagnosed (but not connected) patients to a robust support network and held the first African FOP Family Gathering with clinicians from both South Africa and Nigeria. On the journey, patients with other conditions have been discovered including Juvenile Idiopathic Arthritis (JIA), Progressive Osseus Heteroplasia (POH) and Multiple Osteochondromas (MO). These patients have been diagnosed and connected to both medical care and patient support. Another important outcome is the continued education of doctors globally with the uptake of the CME Master Series in Russia and planned rollouts in Algeria, Nigeria, Kenya, Namibia, Sweden (in partnership with the national patient organization) and Brazil (under the First Lady’s patronage). Conclusion Tin Soldiers offers an innovative model of patient identification, diagnosis, support and education at all levels of care, using the power of story-telling and multi-media marketing. Such a model could be considered for raising the profile of other musculoskeletal or rare conditions and connecting patients to a functioning pathway to care.

Navigating the Pathway to Care in Adults With Cerebral Palsy

As individuals with cerebral palsy (CP) age, they face unique challenges which complicate their ability to access and receive appropriate health care. These problems exist at the level of the health care system, the clinician, and the individual. At the system level, there is an inadequate number of professionals who are informed of and interested in the care of adults with CP. Pediatric clinicians prefer treating children, and adult caregivers are not knowledgeable about and may feel less competent about CP. Pediatric care does not translate well to the adult population, and information about best practices for adults is just starting to develop. Differences in the physiologic development of individuals with CP render well-established clinical protocols for risk screening of chronic diseases less effective. Moreover, lack of supportive resources decreases a caregiver's sense of self-efficacy in treating this population. The patient's ability to navigate these barriers is complicated by the high prevalence of comorbid cognitive impairment and mental health issues including anxiety, depression, and other psychiatric disorders; a bidirectional relationship between challenges in navigating care/needs and comorbid mental health conditions appears likely. Many patients have additional barriers related to social determinants of health, such as access to transportation, accessible health care facilities, and other personal and environmental factors that may impede health maintenance and wellness. Increasing and disseminating knowledge, harnessing the power of new technologies such as telemedicine, and addressing mental health issues are some of the methods that are available to help adults with CP navigate this road.

The potential role of community pharmacy staff in reducing patient delay in consulting with symptoms of rheumatoid arthritis: a qualitative study

Background Rheumatoid arthritis (RA) is a chronic inflammatory arthritis which can cause joint damage and reduced quality of life. Early treatment of RA within 3 months of symptom onset is associated with improved clinical outcomes. However, this window of opportunity is often missed. One important factor that contributes to treatment delay is that patients with symptoms of RA often delay consulting their general practitioner (GP). Previous research indicates that patients with inflammatory arthritis are likely to visit pharmacies for advice before consulting their GP. Therefore, pharmacists are well positioned to identify patients with symptoms of early inflammatory arthritis and sign post them appropriately. This research examines community pharmacy staff’s knowledge, perceptions and approaches to management of patients presenting with symptoms of RA in order to identify training needs and other opportunities for intervention to enhance the role of pharmacy staff in the pathway to care. Methods Semi-structured interviews were conducted with 19 community pharmacy staff with varying roles in the West Midlands, UK, during a 12 month period (2017–2018). The interviews were audio-recorded, transcribed and analyzed using thematic analysis facilitated by NVivo 12. Results Community pharmacy staff (including pharmacists, pharmacy managers, technicians, dispensers and pre-registration pharmacists) had a range of knowledge and differing perceptions of RA and what action should be taken when patients present with symptoms of RA. These can be grouped into four themes: (1) Variations in perceptions and knowledge about RA. (2) The role of the pharmacy in increasing public awareness about RA. (3) The role of the pharmacy staff in facilitating access to the GP. (4) Practical considerations for pharmacy based interventions. Conclusion Amongst community pharmacy staff, there is wide variation in the understanding of RA and the importance of early treatment. This study identifies opportunities for enhanced training of community pharmacists and other pharmacy staff in relation to inflammatory arthritis as well as other pharmacy-based interventions, such as public awareness campaigns about RA and other musculoskeletal conditions. This could result in enhanced signposting to rapid GP consultation for inflammatory symptoms and reduced treatment delay.

Motivational Interviewing for Loved Ones in Early Psychosis: Development and Pilot Feasibility Trial of a Brief Psychoeducational Intervention for Caregivers

Treatment delay and non-adherence in first episode psychosis is a pressing public health problem. Ambivalence regarding psychiatric intervention and labeling among young people with psychosis is a contributing factor. For these individuals, caregivers often facilitate the pathway to care and support ongoing engagement and adherence. Caregivers describe distress and burden associated with this role. This manuscript describes the development and pilot feasibility testing of a motivational interviewing-derived communication training for caregivers of individuals with untreated or under-treated early course psychosis. Individuals with lived experience were consulted in the intervention development process. The training consisted of four 60-min sessions teaching the philosophy and basic skills of motivational interviewing as well as two brief practice calls. Feasibility was assessed with regard to study enrollment, retention, and completion. Satisfaction was assessed through the Client Satisfaction Questionnaire and qualitative feedback. Thirty-one caregivers consented to this pilot feasibility trial and participated via telehealth over the course of 5 months. Intervention completion and reported satisfaction were high, with 94% of consented participants completing at least three training sessions and 84% reporting that they would “definitely” recommend the training to a friend in similar circumstances. There were no between-clinician differences in MILO session attendance (F[2] = 0.53, p = 0.596) or satisfaction total scores (F[2] = 1.03, p = 0.371). Brief motivational interviewing skills training appears to be a feasible and valued intervention for caregivers of individuals with poorly managed early course psychosis.Clinical Trial Registration:ClinicalTrials.gov Identifier: NCT04010747

Pathway to care in co-occurring disorder and substance use disorder: an exploratory, cross-sectional study from India

Purpose There is a paucity of comparative literature on pathway to care among patients with co-occurring disorders and those with only substance use disorders. This paper aims to compare the pathways to care among patients with co-occurring disorder and those with only substance use disorders. Design/methodology/approach A cross-sectional observational study was carried out on male treatment seekers at a tertiary care substance use disorder treatment center in India. Participants were recruited in two groups, those with co-occurring psychiatric and substance use disorders and those with only substance use disorders. The two groups were matched for age and socio-economic status. Findings A total of 189 subjects with co-occurring psychiatric and substance use disorders and 197 subjects with substance use disorders only were recruited. Psychiatric services were the most common first point of care. However, a larger proportion of the subjects in the co-occurring disorder group received the first care from faith healers, while a greater proportion received first care from the therapeutic communities in substance use disorder only group. Initial care was sought mostly following suggestion from the family members in both the groups. The time to treatment for substance use disorders did not differ between the two groups, though the treatment seeking for substance use disorder was more delayed than that of psychiatric disorder in the co-occurring disorder group. Research limitations/implications The findings shed light on the pathway of care followed in India and is a matter of further research. Practical implications Expansion of services and dissemination of information about psychiatric disorders and substance use disorders can provide timely care to patients with substance use disorders and co-occurring disorders. Social implications The findings have a social implication as well. More awareness is needed currently in India for timely treatment of dual disorders. Originality/value The paper is an original research by the authors. The data were collected from the participants who reported to the dual diagnosis clinic. The findings are important as they tell us about the current understanding of dual diagnosis by the general public.

Z Factor: Drama as a tool to tackle mental health stigma: study design and protocol for community and public engagement in rural Zimbabwe

Background: Mental health is slowly gaining global significance as a key health issue, yet the stigma attached to psychosis is still a major problem. There has been little in-depth exploration of sustainable, cost-effective, and replicable community engagement strategies that address mental health myths and stigma, which are major barriers to early health-seeking behaviours. In low-income countries such as Zimbabwe, cultural and spiritual beliefs are at the centre of most mental health explanatory models, perpetuating an environment where mental health conversations are a cultural taboo. Mental health interventions should be accompanied by creative, evidence-based community engagement, ensuring that interventions are suitable for local settings and giving communities a voice in directing their health initiatives. Methods: Z Factor aimed to engage young adults and their support networks across a variety of socioeconomic groups in a rural district of Zimbabwe through their participation in an inter-ward five-staged drama competition. The focus was on psychosis, with subcategories of initial presentation/detection, seeking help/pathway to care, and the road to recovery/treatment. Each drama group’s composition included a young adult and a typical support network seeking treatment from the service provider of choice. Dramas were to act as discussion starters, paving the way toward broader and deeper psychosis treatment discussions among rural communities and gaining insight into service user expectations from health research. Conclusions: Outcomes of the pilot community engagement project will be instrumental in improving understanding community perceptions about psychosis treatment and recovery in rural Zimbabwe and increasing community awareness about psychosis, as well as paving the way for initiating service provider collaboration to promote early detection and encouraging early health-seeking behaviours. The above outcomes will also inform the design of models for more responsive community and public engagement initiatives in similar low resource settings in Zimbabwe and beyond.

Sociocultural Barriers to Early Diagnosis of Autism Spectrum Disorder

Objective: To qualitatively explore community, family, and health care system barriers to early diagnosis of autism spectrum disorder (ASD) in children. Study Design: A phenomenological qualitative approach was used to explore mothers' experiences of receiving ASD diagnosis for their children. Place and Duration of Study: The study was conducted at Autism Resource Centre Islamabad, from March 2018 to August 2018. Materials and Methods: In-depth qualitative interviews of eight mothers of children diagnosed with ASD, who were above 36 months of age. Results: Using thematic analysis, three major themes were identified as barriers in reaching ASD diagnosis i.e. parent's lack of knowledge and misperceptions of ASD; health care system issues like undefined pathway to care, dissatisfaction with medical or associated professionals, delays due to structural and process barriers; and family factors such as stigma around mental health and disability, family denial and financial constraints. Conclusion: Additional educational outreach to families, de-stigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to parents of at-risk children may decrease delays in ASD diagnosis among children.