In total, 228 patients were enrolled, of whom 227 were considered eligible for study participation. The evaluable cohort for analysis consisted of 224 patients who had a patient-completed questionnaire item along with an item completed by at least one other respondent (physician, nurse or carer). Three patients were not included in the analysis either due to missing patient data (n = 2) or to lack of other stakeholder data (n = 1).
Patient demographics and disease and concomitant treatment characteristics are presented in Table 1 and Fig. 1. Overall wellbeing of patients was high, and patients’ lack of insight was mild to moderate. Patients had been treated with PP1M for a mean (SD) of 23.9 (21.28) months before switching to PP3M treatment. Patients had received PP3M for a mean (SD) of 12.8 (3.72) months. At the time of questionnaire completion, patients were most frequently receiving PP3M 525 mg eq (40.5%) or PP3M 350 mg eq (32.4%).
For most evaluable patients (198/224; 88.4%), questionnaires were obtained from at least three different stakeholders; 26 patients (11.6%) had questionnaires completed by two stakeholders.
Alignment of responses was assessed overall and for paired groupings of stakeholders. For many of the results, there was limited inter-rater alignment (pairwise and overall agreement) across the different stakeholders, only responses with moderate or higher inter-rater alignment are specifically reported within this section. Full details of inter-rater alignment for all responses are available in Additional file 1.
A total of 29 physicians and 28 nurses were included in the analysis because some completed questionnaires for multiple patients, thus results are presented as number of responses rather than number of respondents.
Approximately 90% of physicians and 68% of nurses had >10 years’ experience in the psychiatric setting and saw a mean (SD) of 62.8 (34.94) patients and 71.3 (73.18) patients with schizophrenia per month, respectively.
A total of 100 carers completed questionnaires. Carers were most frequently a relative of the patient (69.7%), either a parent (27.3%), child (21.2%) or sibling (21.2%), and 49% of carers lived with the patient.
Changes in patient, carer and medical team experiences following switch to PP3M
The majority of responses (79–97%) from the physicians, nurses, patients and carers indicated that PP3M helped the patient (Fig. 2).
Change in activity levels
Almost half of responses from physicians, nurses and carers reported an increase in patient activity levels following treatment switch, while a third of responses from patients reported that their activity had increased (Fig. 3a). Moderate agreement on activity levels was observed between the physician and nurse, nurse and patient, and nurse and carer (Additional file 1).
When asked about the type of activity changes occurring following switch to PP3M, all stakeholder groups most frequently reported patients as ‘being more social’, followed by that patients ‘returned to a previous sporting activity/hobby’ (Fig. 3b).
Impact on stigma
Physicians, nurses and carers most frequently reported that their patients with schizophrenia were stigmatised (either a little, somewhat or very much) due to their diagnosis (Fig. 4a). Responses from patients most frequently indicated that they experienced at least some stigma, although almost half indicated experiencing no stigma at all. Following PP3M treatment, physicians and nurses most frequently reported a decrease in the patient’s feeling of being stigmatised (Fig. 4b). Patients and carers predominantly reported no change in patient’s feeling of stigmatisation; however, around a third reported a decrease in feeling of stigmatisation (Fig. 4b).
Changes in communication between patients, carers and the medical team
a. Communication quality
Half of responses from physicians indicated that physician–patient communication quality improved following switch to PP3M, while a quarter of responses from patients indicated an improvement in communication (Fig. 5a). Similarly, for nurse–patient communication, over half of responses from nurses indicated that communication quality with patients had improved, while again a quarter of responses from patients indicated this. An improvement in physician–carer communication was reported by a third of physicians and carers, where nearly two-thirds of respondents indicated ‘no change’. Similar responses were received for the change in nurse–carer communication. Moderate agreement was observed between the nurse and carer on change in nurse–carer communication quality (Additional file 1).
b. Frequency of communication with others
Approximately 40% of physicians, nurses and carers and 32% of patients indicated an increase in the frequency of patient communication with family, friends or others following switch to PP3M. ‘Same frequency’ was the most frequent response and was reported in similar proportions from all stakeholders, (Fig. 5b).
c. Discussion of non-medication-related topics
Overall, 52.7% of responses from physicians stated that they discussed non-medication-related topics with the patient more frequently following switch to PP3M than before the switch, and 44.4% and 33.8% of responses from nurses and patients, respectively, reported more discussion. However, 51.3% of nurses and 60.8% of patients reported no change/maintained level in the discussion of non-medication-related topics; less discussion was reported in 2.7% of responses from physicians, 4.3% of responses from nurses and 5.4% of responses from patients. Physicians, nurses and patients responded that the non-medication-related topics most frequently discussed with patients were: family relationships (79.6%, 70.5% and 62.7%, respectively), social communication (55.1%, 54.5% and 30.5%), hobbies (51.0%, 50.0%, and 52.5%) and healthy lifestyle guidance (44.9%, 63.6% and 45.8%).
With regard to discussions carers had with the medical team, 39.5%, 31.5% and 31.3% of responses from physicians, nurses and carers, respectively, indicated an increase in the discussion of non-medication-related topics. Physicians, nurses and carers however, most commonly reported no change in the frequency of the discussion of non–medication-related topics after the patient switched to PP3M (52.9%, 59.3% and 58.3% of the responses, respectively); 7.6%, 9.3% and 10.4% of responses from physicians, nurses and carers, respectively, indicated a decrease in these discussions.
Family relationships were reported by physicians, nurses and carers as the most frequently discussed topic following the treatment switch (84.6%, 68.8% and 68.8% of the responses, respectively).
Regarding discussion of non-medication topics between patients and carers, 36.5% of patients’ responses indicated an increase in discussions, 59.4% reported ‘no change’ and 4.2% reported less discussion. Conversely, 50.0% of carers’ responses indicated increased discussion of non-medication topics, 45.8% indicated ‘no change’ and 4.2% reported less discussion. Moderate agreement was observed between the patient and carer (Additional file 1).
Impact on carer time
There was a notable disconnect between the number of hours the carers reported to spend supporting the patients (most frequently reported as >32 hours/week) and the number of hours recognised by the patient, physician and nurse (most frequently reported as <2 hours/week; Fig. 6a). There was however, moderate agreement between some pairs: physicians and nurses, physicians and patients, nurses and patients, nurses and carers and substantial agreement between patients and carers (Additional file 1).
Whilst the amount of carer time required was underestimated by patients, physicians and nurses, there was greater alignment on the impact that switching to PP3M had on carer time. Approximately, one-quarter of responses from carers indicated that the amount of carer time required to support patients following the switch had decreased (Fig. 6b); however, the majority of responses from all stakeholders indicated ‘the same’ (Fig. 6b). Moderate agreement was observed between the physician and nurse, and nurse and carer (Additional file 1).
In addition, 27.5%, 42.9%, 39.3% and 41.3% of the responses from the patients, physicians, nurses and carers, respectively, indicated that patients required less support from their carer after treatment switch; while ‘no change’ in carer support was indicated by 66.4%, 54.0%, 58.0% and 56.5% of responses, respectively. A small proportion of responses from patients, physicians, nurses and carers indicated an increase in the amount of carer support required by the patient (6.1%, 3.2%, 2.7%, and 2.2%, respectively).
Decision to switch from PP1M to PP3M
Main reason to switch from PP1M to PP3M
Physicians and nurses most frequently selected ‘patient convenience’ (64.6% and 66.5% of the responses, respectively) and ‘to live life as normally as possible’ (61.9% and 59.0% of the responses, respectively) as the reasons for treatment switch. Patients and carers most frequently chose ‘to live life as normally as possible’ (65.2% and 72.0% of responses, respectively) as the main reason for the switch, with ‘patient convenience’ as the second most frequent reason for switching (54.0% and 49.0%, respectively).
Importance of involvement in treatment decisions
Patients, physicians and nurses considered patients as key stakeholders (64.0%, 96.4%, 100%, of the responses, respectively) and nurses as key stakeholders (71.4%, 92.9%, 80.2% of the responses, respectively) in treatment decisions. Carers most frequently considered the physician (83.0%) and patient (73.0%) as the most important stakeholders in treatment decisions. Notably, fewer patients (29.7%) responded that it was important to involve the carer in treatment decisions compared with the number of physicians (53.6%) and nurses (78.6%).
Involvement in the decision to switch from PP1M to PP3M
Physicians and patients most frequently reported that patients were ‘highly’ involved in the decision to switch treatment. Overall, the proportion of physicians that considered patients, carers and nurses to be highly involved in treatment decisions was higher than reported by the other stakeholders themselves (Fig. 7).
Discussion to switch to PP3M
The majority of responses indicated that the physician initiated the discussion to switch from PP1M to PP3M (≥87.0% within each respondent group). Moderate agreement was observed for the physician and nurse, physician and patient, nurse and patient, and patient and carer (Additional file 1). While physicians, patients and carers most frequently responded that the explanation given by the physician was ‘very clear’, a larger proportion of physicians indicated this compared with patient and carer responses. A minority of responses from patients and carers indicated that no explanation was given (Fig. 8).
Frequency of encounters following switch from PP1M to PP3M
Physicians and patients reported a mean (SD) of 3.9 (4.82) and 4.0 (5.10) physician–patient encounters in the 6 months prior to the study, with a near-perfect agreement (Additional file 1), roughly equating to one visit every 6 weeks. Conversely, carers perceived more frequent physician–patient encounters, reporting a mean (SD) of 6.2 (15.51) encounters.
Once every 3 months was the most commonly preferred frequency of physician–patient encounters, although this frequency was opted for by fewer patients and carers (48.2% and 49.0% of responses, respectively) than by physicians and nurses (57.9% and 57.6% of responses, respectively). There was moderate agreement between physician and nurse for the preferred frequency of physician–patient encounters (Additional file 1).
Stakeholders most frequently responded that there was no change in the frequency of physician–patient, physician–carer, nurse–carer and patient–carer encounters following switch to PP3M. Overall, just over one-third of responses from physicians, patients and carers reported a decrease in the frequency of physician–patient encounters (38.7%, 43.1% and 38.1%, respectively. There was moderate agreement between physicians and patients, between patients and carers, and overall with regard to the change in frequency of physician–patient encounters following switch to PP3M (Additional file 1). There was also moderate agreement between the patient and carer with regard to the change in frequency of physician–carer encounters, between the nurse and patient, nurse and carer and patient and carer regarding the change in frequency of nurse–carer encounters, and between the nurse and patient and patient and carer regarding the change in frequency of nurse-patient encounters (Additional file 1).
Most responses received from patients, physicians and carers reported that they were ‘satisfied’ or ‘very satisfied’ with the current frequency of physician–patient visits (91.9%, 93.7% and 94.0%, respectively).
Patient encounters with carers in the 2 months prior to the study
For patients and carers who did not live together, the mean (SD) number of encounters in the last 2 months reported by patients and carers was similar, and equated to contact every other day. Substantial agreement was noted between the patient and carer with regard to the number of patient–carer encounters (Additional file 1). Patients and carers reported no change in the frequency of patient–carer encounter in 59.4% and 52.2% of responses, respectively. Only 4.3% of responses from patients and carers indicated that encounters decreased, while 8.7% of responses from patients and 7.2% of responses from carers indicated that the number of encounters increased.
Of responses from patients and carers regarding the current frequency of encounters, the majority were ‘very satisfied’ or ‘satisfied’ (97.9% and 95.7%, respectively).
In the 12 months prior to the switch, 24.9% of patients were hospitalised for psychiatric reasons, with a mean (SD) of 1.3 (0.72) hospitalisations and 67.6 (80.55) days spent hospitalised. Following switch to PP3M, 9.0% of patients were hospitalised over a treatment duration of 1–1.5 years, with a mean (SD) number of hospitalisations of 2.5 (3.00) and 63.2 (59.11) days hospitalised reported by the physicians.
Correlations between patient judgement/insight and level of illness, and relationship between judgement and insight and whether PP3M helped reduce carer time and support
In the exploratory post hoc analysis, level of illness (as measured by CGI-S) was significantly correlated with patient’s Lack of Judgement and Insight (PANSS item G12; Spearman’s correlation 0.59; p < 0.0001). This substantial positive correlation possibly suggests, that lower disease severity may be linked with better insight. No statistically significant correlations were observed between the patient’s level of judgement/insight and EQ-5D-5L (patient’s assessments of illness) or the number of years since schizophrenia diagnosis.
With regard to the relationship between the patient’s level of judgement/insight and treatment experience with PP3M (i.e. whether PP3M is helping the patient), poorer insight was significantly associated with reduced likelihood of the patient responding that PP3M ‘helps’ (p < 0.0001). However, patient judgement/insight had no significant correlation with physicians’, carers’ or nurses’ responses on patients’ treatment experience with PP3M. For change in carer time required for patient support, no statistically significant relationship with patient insight/judgement was observed for any stakeholder.