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Pediatric cancer is one of the most burdensome chronic diseases, necessitating a variety of severe medical interventions. As a result, the disease and its treatment cause numerous acute and long-term medical, psychological, and socioeconomic strains for young patients and their families. Therefore, psychosocial care using evidence-based interventions (EBIs) before, during, and after medical treatments is essential to ensure that patients receive adequate information and to minimize the adverse emotional and psychosocial impacts such as insecurity, fear, and shame. The present study reports the first promising results of applying cancer-specific psychosocial methods developed in the quality improvement project "My Logbook." The four assessed tools are specifically designed to adequately prepare pediatric cancer patients for surgery, chemotherapy, radiotherapy, and stem cell transplantation. Self and proxy ratings were used to assess the patients' subjective knowledge and emotional well-being before and after each intervention session. The results showed that patient-centered interventions using various creative and developmentally adapted methodologies (e.g., psychoeducation, crafting, games) have the potential to effectively enhance patient health literacy (V = 120.5, p < .001, r = 0.33) and well-being as manifested in more positive (slope = 0.121, p = .016) and less negative (slope = - 0.350, p < .001) or neutral emotions (slope = - 0.202, p = .002). These findings highlight the importance of developing and implementing psychosocial tools in pediatric oncology to prevent psychological overload and negative emotions and to increase subjective control beliefs, autonomy, and empowerment. Moreover, the effective application and systematic evaluation of evidence-based psychosocial tools can facilitate the establishment of standardized guidelines for psychosocial care in pediatric oncology. Thereby, the final goal is to ensure the quality of care and to use education to increase the quality of life for all pediatric cancer patients.Trial registration: ClinicalTrials.gov Identifier: NCT04474678 (July 17, 2020).
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BACKGROUND: Patients with venous thromboembolism (VTE) are at risk for psychological consequences. However, as opposed to physical sequelae of VTE, mental health issues are understudied. OBJECTIVES: To assess anxiety after VTE and investigate associated clinical characteristics. PATIENTS/METHODS: We conducted a prospective cohort study, including patients with acute deep vein thrombosis (DVT) and/or pulmonary embolism (PE). Patients with cancer, pregnancy, or puerperium were excluded. Anxiety was assessed with the PROMIS short form 8a. Standardized T-scores were calculated (reference: 50, SD 10), with higher values indicating more anxiety. We associated clinical characteristics at baseline with T-scores at three-month follow-up in a multivariable linear regression model. Patient clusters depending on anxiety trajectories were explored. RESULTS: We included 257 patients (38.5% women) with a median (IQR) age of 54.1 (42.2-63.5) years. While mean (SD) T-scores decreased from baseline to follow-up (51.03 (9.18) to 46.74 (8.89), p<0.001), we observed an increase in 23.7%. Female sex (T-score change: 3.09, 95% confidence interval (CI), 0.96-5.22), older age until 45 years, and anxiety at baseline were associated with increased T-scores at follow-up. VTE history (-1.55, 95%CI, -3.62 to 0.52) and PE (-1.23, 95%CI, -3.16 to 0.69) were associated with reduced T-scores, albeit not reaching statistical significance. In a cluster of older, female patients with DVT, anxiety tended to increase over time. CONCLUSIONS: While most patients with VTE reported reduced anxiety over time, some patients experienced worsening. Female sex, older age, more anxiety at baseline, no VTE history, and DVT were associated with increased anxiety three months after VTE.
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Saudi Arabia has made substantial advancements in its pediatric healthcare infrastructure. However, substantial gaps persist in addressing hospitalized children's emotional safety, and psychosocial and developmental needs. Internationally, the child life profession has evolved over decades to specifically address these needs, through interventions such as therapeutic play, age-appropriate patient education, and family support. This article evaluates the imperative for integrating the child life profession into healthcare services in Saudi Arabia to transform the quality of pediatric healthcare. An analysis of the current landscape revealed gaps in pediatric psychosocial care. These gaps are listed as national priorities in the health transformation program aimed at improving healthcare quality and enhancing well-being. Integrating the child life profession can help achieve these objectives for children and families in Saudi Arabia. This article highlights the multifaceted benefits of the child life profession in improving patient experiences, healthcare delivery efficiency, pediatric healthcare quality, and the overall well-being of children and families. Strategies for phased implementation, involving healthcare institutions, academic partners, relevant non-profit partners, and policymakers, are proposed.
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INTRODUCTION: Amyotrophic lateral sclerosis (ALS) is an inevitably fatal condition that leads to a progressive loss of physical functioning, which results in a high psychosocial burden and organizational challenges related to medical care. Multidimensional and multiprofessional care is advised to meet the complex needs of patients and their families. Many healthcare systems, including Germany, may not be able to meet these needs because non-medical services such as psychological support or social counselling are not regularly included in the care of patients with ALS (pwALS). Specialised neuropalliative care is not routinely implemented nor widely available. Caregivers of pwALS are also highly burdened, but there is still a lack of support services for them. METHODS: This project aims to assess the perceptions and satisfaction with ALS care in Germany in pwALS and their caregivers. This will be achieved by means of a cross-sectional, multicentre survey. The examination will assess, to which extend the patients' needs in the six domains of physical, psychological, social, spiritual, practical and informational are being met by current care structures. This assessment will be linked to mental well-being, subjective quality of life, attitudes toward life-sustaining measures and physician-assisted suicide, and caregiver burden. The study aims to recruit 500 participants from nationwide ALS centres in order to draw comprehensive conclusions for Germany. A total of 29 centres, mostly acquired via the clinical and scientific German Network for Motor Neuron Diseases (MND-NET), will take part in the project, 25 of which have already started recruitment. PERSPECTIVE: It is intended to provide data-based starting points on how current practice of care in Germany is perceived pwALS and their caregivers and how it can be improved according to their needs. Planning and initiation of the study has been completed. TRIAL REGISTRATION: The study is registered at ClinicalTrails.gov; NCT06418646.
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Community-based intensive home treatment (IHT) is delivered as an alternative to psychiatric hospital admission as part of crisis resolution services. People receiving IHT present with complex mental health issues and are acutely distressed. Home treatment options are often preferred and there is evidence of service fidelity, although less is known about psychosocial care in this setting. Underpinned by a critical realist epistemology, this study aimed to explore psychosocial care in the context of home treatment from the perspectives of staff, service users and family carers. Data were collected using individual interviews and focus groups in two NHS organisations in England. An inductive qualitative thematic analysis resulted in five themes focused on (1) the staffing model and effective care provision, (2) the organisation of work and effective care provision, (3) skills and training and service user need, (4) opportunities for involvement and personal choice, and (5) effective communication. Findings suggest that co-production may improve congruence between IHT service design, what service users and carers want and staff ideals about optimal care. Service designs that optimise continuity of care and effective communication were advocated. Staff training in therapeutic interventions was limited by not being tailored to the home treatment context. Evidence gaps remain regarding the most effective psychosocial care and related training and supervision required. There is also a lack of clarity about how carers and family members ought to be supported given their often-crucial role in supporting the person between staff visits.
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his article has been withdrawn at the request of the Editor. The Publisher apologizes for any inconvenience this may cause. The full Elsevier Policy on Article Withdrawal can be found at https://www.elsevier.com/about/policies/article-withdrawal.
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The role of pharmacists is increasingly expanding to encompass holistic patient-oriented services, including prevention, health advice, and counseling. Despite this, the pharmacist's role in public psychosocial wellbeing remains understudied. Project #CAVAsa, a collaboration between Flemish Pharmacists' Network and Centers for General Wellbeing (CAW), aimed to strengthen the pharmacist's role in psychosocial care. Through training and supportive materials, pharmacists were equipped to detect, inform, and refer patients to appropriate psychosocial services. Between 2021 and 2024, 387 pharmacies participated, registering 415 patient contacts about psychosocial wellbeing. Key enabling conditions for sustainable integration of pharmacists in psychosocial care include delineating their role, strengthening knowledge and competencies, and facilitating integrated care and collaboration. Further support for pharmacists and other primary care providers in psychosocial care is needed to bridge the gap between the health and social services.
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Servicios Comunitarios de Farmacia , Farmacéuticos , Rol Profesional , Humanos , Farmacéuticos/organización & administración , Servicios Comunitarios de Farmacia/organización & administración , Conducta Cooperativa , Bélgica , Masculino , FemeninoRESUMEN
In medically assisted reproduction (MAR) success has mostly been measured in terms of achieving (healthy) livebirths. We argue this focus is too narrow and that success should be measured in terms of alleviating patient suffering caused by an unfulfilled child wish. The major implication is that clinics must better tailored care to effectively support patients who do not have child(ren) with treatment. First, we argue that clinics have a duty of care towards patients for whom MAR does not result in children because this is a common treatment outcome, because treatment is burdensome and creates new losses for patients, and because the field has the necessary expertise to provide support and it is part of patient-centred care. Then, we examine concerns about the adequacy of addressing the possibility that treatment may end without children, namely, that this may hinder patients' hope and put them off doing treatment, and that it may be perceived as a sign of clinical incompetence, as well as concerns about the required skill set. We end with a set of research-informed recommendations to promote healthy adjustment to ending fertility treatment without children. These focus on the need to reconceptualize 'success' and 'failure' in MAR, to promote open discussion about the possibility of treatment not resulting in children and encourage patients to develop 'plan(s) B', to support patients who end treatment without children, and to create the organizational structures needed to support clinics and healthcare professionals in this endeavour.
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Clínicas de Fertilidad , Técnicas Reproductivas Asistidas , Humanos , Femenino , Embarazo , Infertilidad/terapia , Atención Dirigida al PacienteRESUMEN
BACKGROUND: Individuals with inflammatory bowel disease (IBD) experience cycles of aggressive physical symptoms including abdominal pain, diarrhea, and fatigue. These acute symptoms regress and return, and chronic symptoms and complications often linger. The nature of the disease can also cause individuals to experience psychological distress including symptoms of anxiety and depression; however, unlike the physical symptoms of IBD, these psychological symptoms often remain untreated. OBJECTIVE: This study aims to evaluate the feasibility, acceptability, and effectiveness of virtual mindfulness-based stress reduction (v-MBSR) for adults with IBD. METHODS: IBD patients with self-reported anxiety or depression were recruited from clinics in Alberta, Canada to participate in an 8-week v-MSBR intervention. Eligible patients participated in v-MBSR delivered by psychiatrists using a videoconferencing platform. Primary feasibility outcomes included trial uptake, adherence, attendance, and attrition rates. Secondary effectiveness outcomes included measures of anxiety, depression, quality of life (QoL), and mindfulness. Effectiveness data were collected at 3 time points: baseline, at intervention completion, and 6 months after completion. To further assess feasibility and acceptability, participants were invited to participate in a semistructured interview after completing v-MBSR. RESULTS: A total of 16 of the 64 (25%) referred patients agreed to participate in v-MBSR with the most common reason for decline being a lack of time while 7 of the 16 (43.8%) participants completed the program and experienced encouraging effects including decreased anxiety and depression symptoms and increased health-related QoL with both improvements persisting at 6-month follow-up. Participants described improved coping strategies and disease management techniques as benefits of v-MBSR. CONCLUSIONS: Patients with IBD were interested in a psychiatrist-led virtual anxiety management intervention, but results demonstrate v-MBSR may be too time intensive for some patients with IBD patients. v-MBSR was acceptable to those who completed the intervention, and improvements to anxiety, depression, and QoL were promising and sustainable. Future studies should attempt to characterize the patients with IBD who may benefit most from interventions like v-MBSR.
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Youth with epilepsy (YWE) are at elevated risk for anxiety, yet anxiety is often undetected and understudied in this population. Most research on anxiety in YWE is based on parent proxy-report and broad-band measures with limited sensitivity. The aim of the current study was to: 1) examine rates of anxiety symptoms in YWE using a diagnosis-specific, self-report measure of anxiety symptoms, 2) assess differences in anxiety symptoms by sociodemographic and medical variables, and 3) evaluate changes in anxiety symptoms following a brief behavioral health intervention delivered within an interdisciplinary epilepsy clinic visit. As part of routine clinical care, 317 YWE [Mage=13.4+2.5 years (range 7-19 years); 54% female; 84% White: Non-Hispanic] completed the Multidimensional Anxiety Scale for Children, self-report (MASC-10), with a subset completing the MASC-10 at a second timepoint (n=139). A retrospective chart review was completed and sociodemographic, medical variables and behavioral health interventions were collected. Thirty percent of YWE endorsed elevated anxiety symptoms, with higher rates in those who were younger. YWE who received a behavioral health intervention for anxiety (n=21) demonstrated greater decreases in anxiety symptoms from Time 1 to Time 2 compared to those who did not receive a behavioral intervention (n=108). The integration of psychologists into pediatric epilepsy clinics may have allowed for early identification of anxiety symptoms, as well behavioral interventions to address these symptoms, which has the potential to decrease the need for more intensive services.
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Ansiedad , Epilepsia , Autoinforme , Humanos , Femenino , Adolescente , Masculino , Niño , Epilepsia/terapia , Epilepsia/psicología , Epilepsia/diagnóstico , Ansiedad/terapia , Ansiedad/diagnóstico , Ansiedad/etiología , Adulto Joven , Escalas de Valoración Psiquiátrica , Estudios Retrospectivos , Terapia Conductista/métodosRESUMEN
There is little research informing appropriate specialty palliative care consultation over primary palliative care practice, or the ability of the burn surgeon to perform skills such as effective goals of care discussions. We sought to characterize patterns of palliative care utilization and hypothesized that greater modified Baux (mBaux) and systemic organ failure assessment (SOFA) scores would correlate with increased specialty palliative involvement but have no relationship with primary palliative involvement. A retrospective chart review was conducted at a regional burn center between 2020-2021 including patients admitted with burns or inhalation injury and a mBaux score over 60, detailing circumstances of palliative consultation and goals of care discussions. 163 patients met criteria. Odds of specialty palliative consultation increased by 3.9% for each additional mBaux score point and 23.3% for every SOFA score point. The odds of a goals of care discussion by a burn surgeon increased by 3.5% for each mBaux score point and 23.9% for each SOFA score point. Those receiving palliative consultation tended to have greater burn surface area, graft complications, code status changes, and more goals of care discussions by any provider at admission; there was no difference in symptom control or hospital length of stay. Higher mBaux and SOFA scores correlate with increased odds of both specialty and primary palliative involvement in our cohort. There is bias in diverting both primary and specialty palliative care resources toward acutely ill patients and those with less immediate projected mortality may need additional attention.
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Structures for the care of relatives after a stay on the intensive care unit are present in principle, but no systematic interfaces between the different types of care and the care sectors exists. Therefore, in a first step, the needs of relatives during intensive care treatment should be continuously assessed and addressed as early as possible. Furthermore, proactive provision of information regarding aftercare services is necessary throughout the entire course of hospitalization and rehabilitation, but also in the phase of general practitioner care. The patient's hospital discharge letter with a detailed social history can serve information transfer at the interfaces.
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Cuidados Posteriores , Unidades de Cuidados Intensivos , Comunicación Interdisciplinaria , Humanos , Cuidadores , Conducta Cooperativa , Cuidados Críticos , Alemania , Colaboración Intersectorial , Alta del Paciente , Relaciones Profesional-FamiliaRESUMEN
Background: Training the old-age home staff is essential in raising geriatric mental health care standards in India. Inadequate knowledge on ageing and psychosocial interventions is a significant issue in old-age homes. Old-age home staff must know how to provide individualized psychosocial care and support for older adults. Hence this study aimed to test the feasibility of the psychosocial care training program for the staff working in old-age homes. Methods: A quasi-experimental research design (pre-post without a control group) was used. Forty-two staff members participated. Mary Starke Harper Aging Knowledge Exam (MSHAKE) and structured checklist to measure the staff's knowledge on ageing, psychosocial interventions, welfare legislations, schemes, and support services were administered before, immediately after, and two months after the program and the self-efficacy checklist was administered immediately and two months after the program, to examine the efficacy of the program. Results: Significant improvement was found in the ageing knowledge and the knowledge of psychosocial intervention and psychosocial care. These improvements continued for two months (p < .001). Similarly, their self-efficacy in managing such problems was also sustained across two post-measurements (p = .045). Conclusions: Face-to-face training programs would enhance the knowledge of the old age home staff. This Psychosocial Care Training module can be used for training old age home staff to address various psychosocial needs, concerns and other psychosocial problems of the residents.
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PURPOSE: Parents of children/adolescents with cancer are placed in a state of severe suffering due to serious concerns, fears, and radical daily life changes. Human support is an important source of support for successful coping. This study explored fundamental aspects of parents' daily, social, and personal life during their child's treatment to deepen our understanding of 'who' plays a significant role in supporting parents, and how, and to what extent this support is provided. METHODS: This qualitative study was undertaken in a compassion paradigm, designed and guided by Heidegger's and Gadamer's philosophy and compassionate methods. Data were generated through ethnographic observations (144 h), focus group interviews (n = 2), and individual/couple interviews (n = 16) at two Danish hospitals. Inductive content analysis was used to analyse data. RESULTS: Overall, support from peers, health professionals, and social networks constituted significant sources of support. Especially peers and health professionals had a continuous support role, which was fundamental for establishing interpersonal closeness and relieving suffering. Sharing responsibilities between parents and among social networks seemed to ease the emotional and practical burden. However, to ensure effectiveness, social networks must be available, outreach, and responsive to needs. Moreover, parents disclosed little self-awareness and resources and options for self-care due to a combination of lack of awareness, time, and space in the hospitals. CONCLUSION: Safeguarding interpersonal and interparental understanding and closeness in parental care is essential. One way is building resilience and a broader human-to-human-based safety net around the family, including social networks and professional psychosocial support, advantageously using compassion.
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Adaptación Psicológica , Empatía , Grupos Focales , Neoplasias , Padres , Investigación Cualitativa , Apoyo Social , Humanos , Femenino , Masculino , Padres/psicología , Niño , Adulto , Neoplasias/psicología , Neoplasias/terapia , Dinamarca , Adolescente , Persona de Mediana Edad , PreescolarRESUMEN
Objective: The electronic health record (EHR) has emerged as a fundamental tool but has focused on physical care delivery. Psychosocial screenings and interventions are central to palliative care that supports whole person care models; however, EHR innovations to capture psychosocial care have not been optimized. Material and Methods: A narrative review was conducted from 2009 to March 2023. EMBASE, PubMed, and PsychINFO were queried to identify articles that discussed EHR tracking of psychosocial care in palliative care. Results: Eight articles met inclusion criteria representing a broad range of works in palliative care. Three themes emerged in the narrative review: (a) quality improvement strategy to support EHR tracking in collaboration with key stakeholders, (b) clarification of psychosocial domains for documentation and measurement, and (c) lack of standardization in data collection tools and processes. Discussion: This narrative review contributes to a limited body of literature on EHR extraction of complex sources of distress in palliative care. The designation of four domains (social history and distress, psychological symptoms, spiritual needs, and patients' goals and preferences) defines psychosocial practice aligned with palliative care quality metrics. Recommendations highlight the importance of shared priorities and collaboration with key stakeholders to fully execute on the clinical utility of EHRs. Future work will continue to evaluate data collection tools and systematic approaches to capture psychological needs and social environment and its impact on health outcomes and quality of life. Conclusion: This review will expand on opportunities for automated reporting of psychosocial care in the context of seriously ill.
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Registros Electrónicos de Salud , Cuidados Paliativos , Humanos , Cuidados Paliativos/psicología , Femenino , Masculino , Adulto , Enfermedad Crítica/psicología , Persona de Mediana Edad , Anciano , Anciano de 80 o más AñosRESUMEN
Introduction: Mental health disorders (MHDs) are responsible for much impairment of quality of life in Brazil and worldwide. Early diagnosis and effective treatment strategies are required due to the heterogeneous symptoms and multifactorial etiology. Methods: A descriptive retrospective observational study was performed aiming to characterize the clinical and psychiatric profiles of patients with MHD attending a Brazilian public tertiary psychiatric outpatient clinic, which is a reference health service for more than 2 million inhabitants. Predominant clinical and sociodemographic aspects of patients were evaluated between March 2019 and March 2021. Results: A total of 8,384 appointments were analyzed. The majority of patients were female, and the mean age was 45 years old. Generalized anxiety disorder (GAD) was the most common MHD. The prevailing symptoms were sadness, anxiety, and irritability, with the most prescribed medications being selective serotonin reuptake inhibitors. Conclusion: The epidemiological characterization of mental disorders in specialized mental health outpatient clinics provides evidence for the establishment of more specific protocols and advocates a dimensional transdiagnostic approach as an aid to public mental health services.
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BACKGROUND: Depression is common in people with chronic kidney disease, yet little is known about how depression is identified and managed as part of routine kidney care. OBJECTIVES: The primary objective was to survey all UK adult kidney centres to understand how depression is identified and managed. A secondary objective was to broadly describe the variability in psychosocial care. DESIGN: Online survey. METHODS: The survey comprised of three sections: (1) general kidney care, (2) psychological provision and (3) social work provision. RESULTS: 48/68 (71%) of centres responded to the general survey with 20 and 13 responses from psychological and social work module respectively. Only 31.4% reported having both in centre psychological and social work practitioners. Three centres reported no access to psychosocial provision. Of the 25 centres who reported on pathways, 36.0% reported having internal pathways for the identification and management of depression. Within services with psychological provision, screening for depression varied across modality/group (e.g., 7.1% in mild/moderate chronic kidney disease vs. 62.5% in kidney donors). Cognitive Behavioural Therapy and Acceptance and Commitment Therapy were the most common interventions offered. Most psychosocial services were aware of the National Institute for Health and Care Excellence guidelines for managing depression in long-term conditions (n = 18, 94.7%) yet few fully utilised (n = 6, 33.3%). Limited workforce capacity was evident. CONCLUSIONS: There is considerable variability in approaches taken to identify and treat depression across UK kidney services, with few services having specific pathways designed to detect and manage depression. Workforce capacity remains a significant issue.
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Depresión , Humanos , Reino Unido , Depresión/psicología , Depresión/terapia , Encuestas y Cuestionarios , Insuficiencia Renal Crónica/psicología , Insuficiencia Renal Crónica/terapia , Insuficiencia Renal Crónica/complicaciones , Masculino , Femenino , AdultoRESUMEN
How frontline care professionals interpret and fulfill their health promotion roles is of great importance for the health of the vulnerable clients they work with. While the literature on health promotion is limited to describing the roles of healthcare professionals, this study examines the health promotion roles held by various frontline professionals when working with clients with combined psychosocial problems and how this is associated with professional identity. Based on ethnographic data from Dutch frontline professionals in social welfare, general healthcare and mental healthcare, this article shows how various frontline professionals promote health by reframing and customizing health problems and that this is associated with how they identify as pragmatic or holistic professionals.
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Antropología Cultural , Promoción de la Salud , Humanos , Países Bajos , Personal de Salud , Bienestar SocialRESUMEN
Purpose: Over 87,000 adolescents and young adults (AYAs) are diagnosed with cancer in the United States each year. Improvement in outcomes in the AYA population has lagged that of both younger and older patients. This decrement may be attributable to several factors, including insufficient supportive care services. Our team modified the Needs Assessment & Service Bridge (NA-SB) tool, utilizing an iterative approach with patient and clinician stakeholders to meet the needs of the AYA population at a large Midwestern Cancer Center. Methods: We recruited a 10-member AYA Advisory Board (AB) from our Cancer Center patients, and met five times over 9 months to discuss supportive care and the NA-SB. We recruited a multidisciplinary group of oncology clinicians to assess content validity and conducted interviews with nine clinician stakeholders to discuss implementation. Results: The AB generated a 59-item-modified NA-SB, retaining most of the original NA-SB items and adding several more. Five items with concerns for relevance and/or clarity were revised to create the final 58-item-modified NA-SB. Priorities for implementation were identified by AB and clinician stakeholders. Conclusions: The modified NA-SB thoroughly reflects supportive care needs of our Midwestern AYA cancer survivors. When implemented, the tool may facilitate patient-care team communication and provide data to prioritize development of new supportive care resources. AYA cancer survivors have unique supportive care needs that are insufficiently addressed by current care models; using the modified NA-SB may help address those needs, leading to improved AYA outcomes.
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Supervivientes de Cáncer , Neoplasias , Humanos , Adolescente , Adulto Joven , Evaluación de Necesidades , Encuestas y Cuestionarios , Neoplasias/epidemiología , Oncología MédicaRESUMEN
The advent of dopamine (D2) receptor-blocking medications over 70 years ago, ushered in a new era of biological treatment for schizophrenia. However, we argue that little subsequent progress has been made in translating this into fulfilled and fulfilling lives for people with schizophrenia. This Viewpoint asks why this is the case, and suggests ways forward for capitalising on extant and emerging new treatments for psychotic disorders, to the betterment of the lives of people living with schizophrenia.