Presence and Disturbance of PRO Key Patient Reported Disease-related Symptoms in Schizophrenia: Preliminary Results in Outpatient Psychiatric Services in Spain

Abstract

Abstract

Introduction:Key PRO disease-related symptoms measurement in medicine is a crucial outcome research area, in consideration of the meaningfulness and value from the patient’s perspective of the personally disturbing key symptoms of the illness, and of their potential responsivity to treatment. Aims: To explore the presence and personal disturbance of key patient reported disease-related symptoms in patients affected by DSM-5schizophrenia who are in treatment in outpatient psychiatric services in Spain. Method: The exploration of the presence and personal disturbance of key patient reported disease-related experiences and symptoms in schizophrenia uses the Scale for the Assessment of Passively Received Experiences (PRE), a 121 items self-report focusing on the key symptoms of schizophrenia and asks respondents whether each PRE experience has happened during the past month (YES/NO) and how personally disturbing each present experience was (rated from 0 to 10, as bad as you can imagine). Participants’ view about the PREexperiences was also reported, in particular regarding the importance of such disturbing experiences for their life, about their expectations that treatment could target their disturbing experiences, and about their expectations that their doctor should know and be aware about their disturbing experiences. Results: Data were collected from 70 participants affected by DSM-5 schizophrenia (male 72.9%, mean age 41y;SD 10.57; Min 21-Max 65) who were in treatment in outpatient psychiatric services in Spain (Málaga, Barcelona and Cádiz). The patients (94.3%) were in treatment with antipsychotics. The patients reported a relevant number of PRE experiences, both as present and as disturbing.The average number of present PRE experiences per patient was34.87 (SD 20.86; median 34) and the average number of PRE disturbing experiences (1-10) per patient was 31.90 (SD 20.62; median 29.50). The personal disturbance due to the PRE experiences was frequently rated by the patients as severe. The average number of PRE experiences per patient with a disturbance rated from 8 to 10 was 16.14 (SD 13.90; Median 14.50; Min 0, Max 53). 92,9% of the patients had at least one PRE experience causing a disturbance they rated 8-10, and 55.7% had at least tenPRE experiences causing a disturbance they rated 8-10. A substantial number of patients reported PRE experiences causing a maximum disturbance (10, as bad as you can imagine). The average number of items per patient with a disturbance rated by the patient 10 was 6.39 (SD 9.67: Median 3; Min 0, Max 52). 70% of the patients had at least one item they rated with a 10 disturbance, and 20% of the patients had at least ten items causing a disturbance they rated as 10. The experiences and symptoms described by the PRE were reported by the patients as important in their life (88.6%). According to their view treatment should help them with these disturbing experiences (95.7%), and their doctor should know and be aware about the patient’s PRE disturbing experiences (84.3%). Discussion:Theexploratory results indicate that key patient reported symptoms in schizophrenia are reported as frequent, severe and persistent by the patients in spite of treatment.The Scale for the Assessment of Passively Received Experiences (PRE) is aimed to enable PRO disease-related symptoms measurement available in schizophrenia to help patients, doctors, and R&D to identify and evaluate dedicated and properly targetedtreatments.

Source of Funding: PI16/00647, financiada por el ISCIII (Ministerio de Economía, Industria y Competitividad),y cofinanciada con el Fondo Europeo de Desarrollo Regional (FEDER) . Universidad de Málaga (Plan Propio)

Abstract

Introduction:Key PRO disease-related symptoms measurement in medicine is a crucial outcome research area, in consideration of the meaningfulness and value from the patient’s perspective of the personally disturbing key symptoms of the illness, and of their potential responsivity to treatment. Aims: To explore the presence and personal disturbance of key patient reported disease-related symptoms in patients affected by DSM-5schizophrenia who are in treatment in outpatient psychiatric services in Spain. Method: The exploration of the presence and personal disturbance of key patient reported disease-related experiences and symptoms in schizophrenia uses the Scale for the Assessment of Passively Received Experiences (PRE), a 121 items self-report focusing on the key symptoms of schizophrenia and asks respondents whether each PRE experience has happened during the past month (YES/NO) and how personally disturbing each present experience was (rated from 0 to 10, as bad as you can imagine). Participants’ view about the PREexperiences was also reported, in particular regarding the importance of such disturbing experiences for their life, about their expectations that treatment could target their disturbing experiences, and about their expectations that their doctor should know and be aware about their disturbing experiences. Results: Data were collected from 70 participants affected by DSM-5 schizophrenia (male 72.9%, mean age 41y;SD 10.57; Min 21-Max 65) who were in treatment in outpatient psychiatric services in Spain (Málaga, Barcelona and Cádiz). The patients (94.3%) were in treatment with antipsychotics. The patients reported a relevant number of PRE experiences, both as present and as disturbing.The average number of present PRE experiences per patient was34.87 (SD 20.86; median 34) and the average number of PRE disturbing experiences (1-10) per patient was 31.90 (SD 20.62; median 29.50). The personal disturbance due to the PRE experiences was frequently rated by the patients as severe. The average number of PRE experiences per patient with a disturbance rated from 8 to 10 was 16.14 (SD 13.90; Median 14.50; Min 0, Max 53). 92,9% of the patients had at least one PRE experience causing a disturbance they rated 8-10, and 55.7% had at least tenPRE experiences causing a disturbance they rated 8-10. A substantial number of patients reported PRE experiences causing a maximum disturbance (10, as bad as you can imagine). The average number of items per patient with a disturbance rated by the patient 10 was 6.39 (SD 9.67: Median 3; Min 0, Max 52). 70% of the patients had at least one item they rated with a 10 disturbance, and 20% of the patients had at least ten items causing a disturbance they rated as 10. The experiences and symptoms described by the PRE were reported by the patients as important in their life (88.6%). According to their view treatment should help them with these disturbing experiences (95.7%), and their doctor should know and be aware about the patient’s PRE disturbing experiences (84.3%). Discussion:Theexploratory results indicate that key patient reported symptoms in schizophrenia are reported as frequent, severe and persistent by the patients in spite of treatment.The Scale for the Assessment of Passively Received Experiences (PRE) is aimed to enable PRO disease-related symptoms measurement available in schizophrenia to help patients, doctors, and R&D to identify and evaluate dedicated and properly targetedtreatments.