The Patient Journey of Schizophrenia in Mental Health Services: Results from a Co-Designed Survey by Clinicians, Expert Patients and Caregivers

Abstract

Background: The Patient Journey Project aims to collect real-world experiences on schizophrenia management in clinical practice throughout all the phases of the disorder, highlighting virtuous paths, challenges and unmet needs. Methods: A 60-item survey was co-designed with all the stakeholders (clinicians, expert patients and caregivers) involved in the patient’s journey, focusing on three areas: early detection and management, acute phase management and long-term management/continuity of care. For each statement, the respondents expressed their consensus on the importance and the degree of implementation in clinical practice. The respondents included heads of the Mental Health Services (MHSs) in the Lombardy region, Italy. Results: For early diagnosis and management, a strong consensus was found; however, the implementation degree was moderate-to-good. For acute phase management, a strong consensus and a good level of implementation were found. For long-term management/continuity of care, a strong consensus was found, but the implementation level was slightly above the cut-off, with 44.4% of the statements being rated as only moderately implemented. Overall, the survey showed a strong consensus and a good level of implementation. Conclusions: The survey offered an updated evaluation of the priority intervention areas for MHSs and highlighted the current limitations. Particularly, early phases and chronicity management should be further implemented to improve the patient journey of schizophrenia patients.

The patient journey project in Italian mental health services: results from a co-designed survey on clinical interventions and current barriers to improve the care of people living with schizophrenia

“…Thus, an effective option is to use LAI that, compared to oral AP, seems to improve the compliance and reduce the risk of relapse and of new hospitalizations ( 32 , 33 ). Moreover, the involvement of patients in shared decision-making on pharmacotherapy is essential to improve the subjective quality of care ( 11 , 34 , 35 ).…”

“…Among this framework, the network of care should also involve a wide range of professionals and agencies (including, in- and out-patient services, community care centers, self-help groups, family organizations, psychiatrists, psychologists, nurses, social workers, case managers, and general practitioners, GPs) and, obviously, the patient ( 11 ). Moreover, it is essential that a congruent care pathway will be built according to a lifespan perspective and, most of all, according to the different stages of the disorder: indeed, three crucial stages have been identified in the course of schizophrenia, that are the prodromal and early phases, the acute states of decompensation and the long-term phases ( 4 , 35 ). Among these phases, especially in the long-term management of chronicity, the above-cited psychosocial interventions seem to play an essential role improving overall psychosocial functioning ( 11 ).…”

“…Among these phases, especially in the long-term management of chronicity, the above-cited psychosocial interventions seem to play an essential role improving overall psychosocial functioning ( 11 ). Thus, according to the patient’s needs, the value of the treatment has to comprise a combination of symptom reduction, improved quality of life, better social functioning and subjective well-being, and optimal physical health ( 11 ), and this is possible if MHS will shared their actions in combination with social systems and with all the stakeholders (including caregivers, self-help groups, family organizations, expert patients and GPs) involved in the everyday life of PLWS ( 11 , 35 ). However, the ideal path care for PLWS have to address several structural and clinical unmet needs that include the early recognition/intervention plans (to reduce the duration of untreated psychosis), the treatment of resistant symptoms (including negative, depressive and cognitive symptoms), the personalization of pharmacological treatments to maintain remission and reduce non-adherence (weighing the relation between effectiveness and side effects), the need to deal with somatic comorbidities and comorbid substance abuse, and finally, the suboptimal integration of pharmacological and psychosocial interventions and the poor collaboration among health and social care professionals ( 4 , 11 ).…”

“…Thus, we previously conduct a survey – co-designed by clinicians, expert patients and caregivers – with the aim to identify current unmet needs, gaps and limitations between current knowledges and clinical practice to help MHS to further organize an optimal journey for PLWS, throughout all the three phases of schizophrenia, with the ultimate goal to achieve recovery ( 35 ). This survey focused on the most populous Italian region, Lombardy (~9 million inhabitants), and analyzed the levels of importance and of implementation for several clinical actions/interventions or themes considered of significant importance by the panel of clinicians, patients’ and caregivers’ associations and expert patients (EXP patients).…”

“…Finally, considering the long-term management and the continuity of care, a strong consensus was found, but the level of everyday implementation was slightly moderately implemented. Overall, we observed that early phases and chronicity management have to be further implemented to improve the Patient Journey of PLWS ( 35 ).…”