Help-seeking pathways in early psychosis

This study was able to confirm recent reports from Australia [1] and from Germany [17, 18] that a substantial number of contacts made along the help-seeking pathways were with mental health care professionals. As the gatekeeping model applies for Australia, but not for Germany or Switzerland, mental health care professionals seem to play an important role independent of a particular health system. At the same time, our study also confirms earlier reports [2‐5] about the pivotal role of GPs in the early pathways to care of help-seeking individuals that were referred to our prodromal clinic for an assessment of a potential psychotic at-risk state. While they were solicited in half of all contacts, GPs even constituted the most frequently first-contacted professional group (34.6%). It is noteworthy that in Switzerland patients can refer themselves to GPs without a “gate-keeping” GP. It can be thus assumed that in health systems with “gate-keeping” GPs [19], the present results may be even more representative.

In addition, our results revealed that patients in less symptomatic states more commonly seek help with their GPs. Patients with manifest psychotic symptoms, however, more often contacted specialists. These results are paralleled by the finding that a shift from contacts made with primary carers to contacts with more specialised professional groups is taking place along the pathways (as shown in Fig. 1). Similar findings were reported by Lincoln et al. [3]. We assume that this process may also be an expression of the symptom progression along the course of early psychosis [20, 21].

As we thus had expected, GPs are faced with the difficult task to detect potential at-risk states in patients that do not yet present psychotic, but the unspecific insidious features. This finding is of particular relevance as a recent comprehensive survey among 1089 Swiss GPs was able to show that GPs commonly under-identified the insidious features of emerging psychosis [7]. Preliminary results of an international replication study (IGPS) of the Swiss survey across 10 countries were able to confirm these findings [22]. Although features such as functional disability or social isolation may not necessarily lead to overt psychosis and may either be expression of another psychiatrically relevant process or remit after time, it is the detection of the earliest signs and symptoms of emerging psychosis that has become the aim of preventive efforts. Similarly, depression has been shown to be highly prevalent in emerging psychosis [6]. While this triad—functional disability, social isolation and depression—was found to be highly prevalent across all groups in the present study, it is also a characteristic of the deficit syndrome of schizophrenia [23]. If such symptoms are true-positive precursors of later psychosis, the non-detection of such patients contributes to a substantial delay on their way to specialised services and adequate treatment, which in turn has been shown to negatively affect the outcome of patients with first-episode psychosis [24]. Accordingly, our study confirmed earlier reports that patients with more insidious features showed longer pathway durations than patients with predominant positive symptoms [25]. Deficit syndrome patients, however, may show lower adherence to treatment and are per se characterised by worse outcomes [23].

Interestingly, when compared to specialists and other professional groups, GPs referred patients more rapidly to other professional groups once they were contacted. In contrast, more contacts per patient were found with private psychiatrists and psychologists before final referral to the prodromal clinic was established. Partially, this finding may be explained by our large and repetitious sensitisation of GPs about the insidious features of early psychosis. However, some of the sampled patients had contacted a GP before the sensitisation had taken place, suggesting that GPs tend to refer such patients more rapidly. This would be in line with the findings from both the Swiss survey [7] and its international replication study [22], in which GPs indicated that they wished to rapidly refer patients in whom they suspected a beginning psychosis to specialised outpatient services. Given their degree of specialty, private psychiatrists and psychologists, in contrast, seem not to engage into rapid referral of these patients.

Given the considerable potential for recall bias, our study did not assess type of treatment that was provided to patients at each of their contacts. Thus, no conclusions can be drawn about the adequacy of applied treatment strategies. It may be the psychiatrists and psychologists that are seeing the more symptomatic and “difficult-to-treat” patients who require a stable and continuous treatment setting. However, all patients included into this study were finally referred to our prodromal clinic, which may have either taken place for diagnostic assessment or for optimising treatment. It may thus be suggested that referrals of patients could have ideally been initiated already at an earlier stage along their help-seeking pathways. Interestingly, in two German studies on the pathways to care of patients with first-episode psychosis, contacts with private psychiatrists and psychologist were associated with longer duration of untreated psychosis as compared to GPs and general casualty services [17, 18]. Taken together, these findings suggest that education may not only need to include primary carers such as GPs, but also other professional groups as well as secondary carers such as private psychiatrists and psychologists.

Finally, the comparatively low mean number of contacts (2.38) on the pathways to care over all patient groups may express the effect of the large sensitisation of professional groups that was conducted when our prodromal clinic was established. This finding is identical with the Phillips et al. study [1] who reported a mean number of contacts of 2.36 in their at-risk sample. Additionally, the median duration from initial contact to referral to our prodromal service was very similar to the one reported by Phillips et al. [1] (42.5 vs. 41.4 weeks). In those studies assessing help-seeking pathways of first-episode cohorts, only one other study reported lower mean contacts (1.7; range 1–4) and also was conducted as part of an early psychosis service [5]. In comparison, number of contacts of patient samples not treated in specialised services were reported to be higher. A mean number of contact of 4.9 was reported by Johnstone et al. [2], a finding which was identically reported in a study that included patients treated before and after the establishment of an early psychosis service [3]. These findings point to the importance of specialised early psychosis services.

Finally, a few weaknesses of this survey should be acknowledged. First, this study, like any retrospective research, is limited by an inherent potential for recall bias. Given the considerable length of pathway duration in the case of some patients, information on the exact number and on timing of contacts may be subject to errors. Ideally, all contacted professional groups would need to be contacted and interviewed in order to validate the information obtained by patients and their relatives. Second, pathways were studied on a patient sample, which was mainly constituted by subjects without manifest psychosis. Contacted professional groups may therefore not have been alarmed to refer their patients, and referral to our prodromal clinic may have only occurred in order to exclude an at-risk state for psychosis once the prodromal clinic was established. It can, however, be suggested that referrals would only take place if there is particular need for further assessment. Moreover, referrals may also have been initiated by patients themselves, although we did not control for that aspect in our study. Third, we cannot exclude that pathways may differ in patients that are never referred to our prodromal clinic. It may well be possible that an unknown number of patients in presumed at-risk states are treated by private specialists and undergo complete remission. It may therefore be a per se selection of more impaired patients that will be referred to a prodromal clinic. Although the at-risk criteria applied in the current study are now well-established in the early psychosis research community [26], it may well be possible that not all true at-risk patients meet these criteria. Thus, our study may have only captured a fraction of the individuals developing psychosis [27]. Fourth, we did not control for patient-related factors that may in a large part contribute to referral delays. These factors may include lack of insight, poor social adjustment, paranoid thoughts or avolition. Finally, the training and role of GPs in the health care system may vary across countries; thus, not all of the findings of our study may be generalisable to other settings. However, our findings emerge from a health system where specialists may be contacted without the referral of the “gate-keeping” GPs. Thus, in health systems with gate-keeping models our findings that GPs are more commonly contacted by individuals with insidious features may warrant appropriate education efforts even stronger.