What Do Outpatients With Schizophrenia and Mood Disorders Want to Learn About Their Illness?

The study was an exploratory survey of psychiatric outpatients that used a questionnaire containing open- and closed-ended questions. The study was granted ethical approval from the East of England National Research Ethics Service Ethics Committee.

We developed a “learning experiences” questionnaire for the purpose of this study (available on request). It was designed with the assistance of five patients in East London who had a diagnosis of a mood disorder or schizophrenia, and it was piloted in outpatient clinics with a sample of patients who had similar diagnoses and was then refined. The questionnaire covered four general domains: patient characteristics (age, gender, occupation, race-ethnicity, education, living situation, diagnosis, and length of illness), previous experience of learning about the illness (what they have learned, whom they have learned from, and who was the most and least helpful), wishes for more learning (satisfaction with past information, wishes to learn more, and topics they would like to learn more about and from whom and in what format), and views of group learning interventions (experience of previous attendance at learning groups and willingness to consider attending learning groups in the future).

Closed-ended questions typically had multiple-choice answers, and open-ended questions asked patients to elaborate on their choices. For example, when asked, “What would you like to learn more about?” (and “From whom?” and “In what format?’), patients had the option of selecting as many topics as they liked from a list of items provided. Patients could provide additional information about topics not covered by the list. Satisfaction with past information was scored on a Likert scale, with 0 indicating very unsatisfied and 10 indicating very satisfied.

Participants were recruited from psychiatric outpatient clinics across the three East London boroughs of Newham, Hackney, and Tower Hamlets from April 2011 to June 2012. To be considered for inclusion, patients had to be between the ages of 18 and 70 and able to provide informed consent; to be currently receiving secondary mental health care and attending an outpatient clinic; to have a primary diagnosis of schizophrenia or related disorder (ICD-10 codes F20–F29) or a mood disorder (ICD-10 codes F30–F39) and sufficient command of English to understand the instructions and questions.

Psychiatrists and administrative staff in outpatient clinics were contacted by researchers to establish whether patients with an appointment in the forthcoming week would fulfill the inclusion criteria. On the day of their appointment, eligible patients were approached by their psychiatrist about research participation. Interested patients were introduced to the researcher after their meeting with the psychiatrist. The researcher provided a complete description of the study and obtained written informed consent. Patients were guided through the questionnaire and received £10 upon completion. Qualitative data were analyzed by using content analysis. Quantitative data were analyzed with descriptive statistics. Chi square and t tests were performed to analyze differences between diagnostic groups. All data analysis was conducted with the statistical package PASW Statistics, version 18 (formerly SPSS).

The characteristics of the sample are summarized in Table 1. Most patients were of white racial-ethnic background, were unemployed, had not completed college, and were just as likely to be living alone as with others. The mean±SD duration of illness was 13.9±10.5 years.

Patients reported moderate satisfaction with the amount of information that they currently received about their illness. The mean score on the satisfaction scale was 6.5±2.7 out of 10. Although patients used the full range of scores, data were negatively skewed (median=7), suggesting that patients tended to use ratings from the higher portion of the scale rather than from consistently across the scale.

Table 2 presents data on sources of previously obtained information identified by patients. Most of the 202 patients (84%, N=170) named the psychiatrist as one of their main sources of information, and most of these patients (54%, N=92) also named the psychiatrist as the most helpful. The reasons most frequently cited were “she or he provides simple, clear explanations” (N=17), and “she or he teaches me something specific” (N=16). Of the 86 patients (43% of sample) who identified the general practitioner as an information source, 60% (N=52) also labeled the general practitioner as least helpful. The most frequent reason given was “they don’t have enough time for you” (N=14).

Over two-thirds of the 202 patients (68%, N=138) reported that they would like to learn more about their illness. The top reasons given by the other 32% (N=64) as to why they did not wish to learn more were “I am satisfied with what I know already” (N=37), and “Knowing more would be detrimental to my condition” (N=10). A significant relationship was found between diagnosis and wanting to learn more (χ²=3.78, df=1, p=.05). Patients with a diagnosis of schizophrenia were less likely to want to learn more about their illness; 38% (N=40) of the 106 patients with schizophrenia did not want to learn more about their illness, compared with 25% (N=24) of the 96 patients with a mood disorder.

In terms of specific information, patients reported that in the past they had learned the most about the general nature of the illness (58% [N=62] of patients with schizophrenia and 72% [N=68] of those with a mood disorder) and medication (68% [N=72] and 61% [N=58], respectively). (One patient with a mood disorder reported never having learned anything about the illness in the past; thus the percentages are based on 95 rather than 96 in this instance.) Substantial overlap was noted between information that patients had received in the past and their current learning needs, as well as some discrepancy.

Table 3 presents data on the topics that patients reported wanting to learn more about. Patients’ wishes were mostly heterogeneous; however, the most cited information need, consistent across diagnostic categories, was to learn more about the cause of the illness (62% of patients with schizophrenia, and 57% of those with a mood disorder).

Patients were asked from what source they preferred to learn more about their illness (Table 4). Most cited a psychiatrist (74% of those with schizophrenia and 76% of those with a mood disorder), followed by a general practitioner (44% and 49%, respectively).

Patients were also asked how they would like information delivered to them (Table 5). The vast majority reported that they would prefer to learn about their illness through one-to-one conversations with their chosen professional (92% of those with schizophrenia and 84% of those with a mood disorder). Printed leaflets and information packs followed as second and third preferences. Again, there was little difference between the preferences of diagnostic groups, although patients with a mood disorder were significantly more likely than those with schizophrenia to want to receive information via e-mail (21% versus 6%; χ²=10.11, df=2, p=.006).

Most patients reported never having attended a learning group—neither a psychosis seminar (75% [N=80] of those with schizophrenia and 91% [N=87] of those with a mood disorder) nor a psychoeducation group (93% [N=99] and 91% [N=87], respectively). Of those with no previous experience of a psychosis seminar, 48% (N=38) of patients with schizophrenia and 47% (N=41) of those with a mood disorder reported that they would consider attending one; these proportions were 58% (N=57) and 60% (N=52), respectively, for considering attendance at a psychoeducation group. Among patients who had not previously attended either group, 41% in each diagnostic category reported that they would consider attending both a psychosis seminar and a psychoeducation group in the future (schizophrenia, N=31; mood disorder, N=33).

Patients who would consider attending a psychoeducation group were asked to give their top reason. To “learn and understand more” was cited by 40% (N=23) of those with schizophrenia and 29% (N=15) of those with a mood disorder. The top reason given for wanting to attend a psychosis seminar in the future was to “share own and hear other people’s experiences of the illness” (37% [N=14] of those with schizophrenia and 34% [N=14] of those with a mood disorder). Other patients, however, were put off attending either group because of “the format of the sessions” (10% [N=8] of the 84 patients with schizophrenia who reported not wanting to attend either group and 21% [N=17] of the 81 patients with a mood disorder who reported this). Patients’ dislike of the format included dislike of the group structure of the sessions, the inclusion of family members in the groups, and the didactic style of psychoeducation groups.

Most of the 202 psychiatric outpatients in this sample wanted to learn more about their illness. However, a third did not, and the proportion was higher among patients with schizophrenia. Although patients had received some information about their illness, both those with schizophrenia and those with mood disorders wished to learn more about the cause of the illness, and most patients reported that they would consider various options to obtain that information. The information delivery method cited most frequently was one-to-one conversations with their psychiatrist, followed by leaflets and information packs.

Most of the information currently received by the outpatients in the sample was about medication and the general nature of the illness. These results are consistent with those from a study of learning preferences by Mueser and colleagues (22), which investigated topics that psychiatrists and patients tend to discuss in outpatient clinics. Our results suggest that patients are interested in learning not only about their medication but also about a range of other issues. The patients in our study were most frequently interested in obtaining more information on the cause of the illness. With respect to medication, psychiatrists can explain the known effects and side effects; however, they might struggle to outline the causes of illness. Causes are likely to be multifactorial and impossible to specify with certainty for individual patients. Indeed Baillie and colleagues (23) found that psychiatrists varied widely in their views of the etiology of mental disorders and tended to hold disorder-specific views. Therefore, patients are more likely to encounter various answers to the question of cause depending on their illness and the psychiatrist.

A clear implication of the findings is that the one-size-fits-all approach will not meet the information needs of all patients. Attempts to roll out only one approach, such as psychoeducation groups, to all patients are likely to fail because no single approach is in line with what all patients want. When established methods such as psychoeducation groups are evaluated or new initiatives developed, researchers and clinicians should be aware that each approach is likely to appeal to a limited clientele. At the same time, patients expressed a willingness to consider a range of options that they had not tried, and developing those options and making them both attractive and available to patients are challenges for services. For example, group-based approaches did not appeal to all patients but were still considered an option by up to 60% of those who had not tried them. Therefore, patients should be given greater access to such groups.

A considerable number of patients did not want any more information. This may or may not be a rational attitude, but clinicians should be aware of it and consider these wishes when communicating with patients, in particular those with schizophrenia. Future research may explore how information that is seen as acceptable and useful can be provided to these patients.

Although much information is available on the Internet or through other sources, psychiatrists—at least for the time being—were seen as the most important source of information for psychiatric outpatients. The evidence suggests that psychiatrists cannot be fully replaced as the primary source of information by the Internet or by other professionals. Patients appeared to trust that their psychiatrists would provide reliable information about their illness, which reflects the high level of trust patients have in psychiatrists found in previous studies (1,24).

The results have at least two clinical implications. First, psychiatrists should actively dedicate time to providing information in their outpatient consultations. Sufficient time must be allocated to psychiatric consultations so that psychiatrists can explain and discuss what patients want to know rather than simply referring them to leaflets and Web sites. Second, psychiatrists should be trained how to address patients’ needs for information that go beyond medication and include the cause of illness. In the absence of simple explanations for the cause of schizophrenia and mood disorders, appropriate strategies to address patients’ questions should be developed and included in training.

Patients were asked systematically about their learning experiences and preferences; the questionnaire was not focused on evaluating one specific educational approach. We included patients with schizophrenia and mood disorders. In addition, the sample was much larger than that in the only other study investigating the learning experiences of psychiatric patients (22), for which 60 patients were interviewed.

This study also had limitations. The sample was limited to outpatients in secondary mental health care in East London. All patients were interviewed directly after seeing their psychiatrist, and patients reported that obtaining information from psychiatrists was the most frequent method of past learning. The procedure may have influenced patients’ reports of the most helpful information source. It is also unclear whether outpatients in rural areas, inpatient settings, primary care, and other countries share the experiences and preferences of the patients in our sample. In this exploratory study, we did not adjust the statistical tests of difference for multiple testing.