The use of psychosocial support services among Japanese breast cancer survivors

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1 JJCO Japanese Journal of Clinical Oncology Japanese Journal of Clinical Oncology, 2017, 47(8) doi: /jjco/hyx058 Advance Access Publication Date: 2 May 2017 Original Article Original Article The use of psychosocial support services among Japanese breast cancer survivors Tomoko Matsui 1, *, and Hitoshi Tanimukai 2,3 1 Graduate School of Human Sciences, Osaka University, 2 Faculty of Human Health Sciences, Graduate School of Medicine, Kyoto University, and 3 Palliative Care Center, Department of Palliative Medicine, Kyoto University Hospital, Japan *For reprints and all correspondence: Tomoko Matsui, 1-2, Yamadaoka, Suita, Osaka , Japan. tmk@grappo.jp Received 24 October 2016; Editorial Decision 4 April 2017; Accepted 5 April 2017 Abstract Background: This study aimed to investigate the use of psychosocial support services, the intention to use these services, and to elucidate the characteristics of survivors most likely to use support services among Japanese breast cancer survivors. Methods: We invited breast cancer survivors to complete an online questionnaire via an sent to subscribers of a non-profit organization mailing list. We asked participants questions related to demographics, opinions on the state of psychosocial support services, and their interest in using these services. Participants were also asked to complete the Hospital Anxiety and Depression Scale and the Brief Cancer Worry Inventory (BCWI). Results: We analyzed the data of 171 participants. Those who used some form of psychosocial support service constituted 50.9% of the participant population. Participants used cancer consulting and support center services (13.5%), hospital and non-hospital support groups (12.9%, respectively), psychiatry (11.1%), hospital and non-hospital cancer salons (8.8%, respectively), psychosomatic medicine (8.2%), therapist counseling (6.4%) and psycho-oncology department services (4.1%). Non-users who suffered from adjustment disorders or major depression (52.1%) reported higher total BCWI and the subscale scores had no concrete plans to use psychosocial support services. Conclusions: The usage levels of psychiatry, psychosomatic medicine and psycho-oncology services in our study were higher than those reported in any previous Japanese study within the psycho-oncology field. Participants joining a breast cancer survivors mailing list, or their being female, may have led to a higher use of such services. A high degree of distress does not necessarily lead cancer survivors to seek psychosocial support services. Key words: help-seeking behavior, psychosocial support service, breast cancer, cancer survivors, utilization of psychosocial support services Introduction Breast cancer survivors have concerns and suffer psychological distress after diagnosis (1), although they generally have a better survival rate compared with survivors with other types of cancer; many of breast cancer survivors suffer from long-term psychological distress, such as anxiety and depression. Additionally, it has been reported that about 10 35% of breast cancer survivors suffer from clinical psychological distress (2,3). Furthermore, psychological distress correlates with quality of life (4). Hence, the reduction of psychological distress has been emphasized in the treatment of cancer. Recently, the availability of psychosocial support services has increased in Japan. We collectively define psychosocial support services as services that aim to resolve the psychosocial problems of cancer survivors; services include, for instance, psychiatry, counseling, The Author Published by Oxford University Press. All rights reserved. For permissions, please journals.permissions@oup.com 743

2 744 The use of psychosocial support services and cancer consultation support. However, the utilization rate of these services is lower in Japan compared to Western societies. Previous studies reported that less than 30% of cancer survivors used mental health services after diagnosis in the USA (5 7). On the other hand, a little over 10% of survivors visited psychiatrists or used psychosomatic medicine in Japan (8,9). The gap between the high levels of distress experienced by survivors and the low level of psychosocial support service utilization among them has been termed the services gap, and has been investigated in the field of help-seeking behavior (HSB). HSB is defined as a problem-focused planned behavior involving interpersonal interaction with a selected health care professional (10). Studies on HSB for psychosocial support services among cancer survivors have reported many factors that contribute to the use of these services. Factors include a perceived need for psychosocial services and support, environmental conditions, physical problems, and psychological problems (11). Many previous studies were retrospective and compared the characteristics of users with non-users. Some studies based of the theory of planned behavior (TPB) were reported (12). The TPB explains the mechanisms of HSB as an intention to perform behaviors with high accuracy from attitudes toward the behavior, subjective norms, and perceived behavioral control. These intentions, together with the perceptions of behavioral control, are known to account for individual differences in actual behavior. Studies based on TPB showed that positive attitudes toward psychological support and female were important factors in determining the future use of services, and that the future intention to use services was a mediating factor between positive attitudes to and the actual use of support services (13,14). Thus, the intention to seek help, or the intention to use a psychosocial support service, was thought to be important. There have been few reports on the use of psychosocial support services among Japanese cancer survivors. The purposes of our study were (1) to investigate the use of psychosocial support services among Japanese breast cancer survivors, (2) to investigate the future intention of non-users to use them and (3) to understand the characteristics of current non-using cancer survivors who are highly likely to need psychosocial support services. Those survivors most likely to be in need of support services are those categorized as having adjustment disorders or major depression. Patients and method Participants and procedure We sent a URL via to Japanese breast cancer survivors who had subscribed to a mailing list managed by a non-profit organization promoting the latest information about breast cancer for Japanese women living in Japan and the United States. We conducted the survey without setting any detailed criteria on disease status. Respondents were invited to complete a questionnaire on our website. A total of 173 people consented to answer the questionnaire. This study was conducted between 1 and 24 March The study protocol was approved by the Institutional Review Board and Ethics Committee of Osaka University Hospital and was conducted in accordance with the Declaration of Helsinki. Measures Socio-demographic data We asked participants for demographic information including age, sex and residential status. Survivors treatment status and date of diagnosis were also requested. Psychological distress The Japanese version of the Hospital Anxiety and Depression Scale (HADS) is a 14-item self-report instrument that assesses anxiety (7 items) and depression (7 items) (15,16). Each item is scored from 0 to 3, and the maximum score for each subscale is 21. The total score is recommended for use in assessing psychological distress, and the recommended cut-off scores are 10/11 for adjustment disorders, and 19/20 for major depression (16). The Brief Cancer Worry Inventory (BCWI) is a 15-item self-report questionnaire that assesses cancer-related worries on a numeric scale (0 100) (17). Severity of worry is calculated by totaling the scores for each item. The inventory consists of three factors: future prospects, physical and symptomatic problems and social and interpersonal problems. Use of psychosocial support services We asked survivors about their experiences with psychosocial support services to resolve their problems following their cancer diagnosis (see in Table 2). Moreover, we asked those who had experience of using services (henceforth, users) about the continuing use of the services (yes or no) and their degree of satisfaction with services (1: not at all satisfied to 5: very satisfied ). In addition to this, we asked about the use of psychiatry or psychosomatic medicine prior to receiving a cancer diagnosis. Additionally, we asked those who had never used psychosocial support services after receiving a cancer diagnosis (henceforth, nonusers) about their interest and intention to use them in the future; the available responses were as follows: planning a concrete schedule to use some psychosocial support services, not planning a concrete schedule but intending to use it as necessary, not planning a concrete schedule but being interested in it, and neither planning a concrete schedule nor being interested in such services. In addition, we asked non-users, who did not enter the survivors association, their preference of psychosocial support services. That is, we asked them which services they chose if they use; the results are presented in Table 3 (with multiple answers). Use of survivors association We asked participants about their involvement with survivors associations (members or non-members). Statistical analysis We calculated descriptive statistics and conducted t-tests or chisquare tests to examine the demographic information and psychological distress differences between groups. Statistical significance levels were set to 0.05 for analyses. All statistical analyses were conducted using IBM SPSS Statistics version 24 software for Mac. Results Participants We used the data of 171 participants (3 males, 168 females; mean age = 50.8 years (range: 34 79, SD = 8.3)). Because of incompleteness in answers, two participants were excluded. The mean period from diagnosis was 59.0 months (range: 2 300; SD = 46.1). Demographic information of all participants is described in Table 1. Among participants, 39.8% were members of survivors associations either outside of a hospital (31.0%) or in a hospital (17.5%) (Table 1). Some participants had visited medical doctors (psychiatry and/or psychosomatic medicine) before receiving a cancer diagnosis (17.5%) (Table 1). Chi-square tests showed a significant relationship between the use of psychosocial services after receiving a cancer diagnosis and membership of survivors associations (P = 0.021), between the current use and the use of psychiatrists or psychosomatic medicine before being diagnosed with cancer (P < 0.001).

3 Jpn J Clin Oncol, 2017, Vol. 47, No Table 1. Demographics and other information All (N = 171) Users (N = 87) Non-users (N = 84) Mean/N SD/% Mean/N SD/% Mean/N SD/% t/χ 2 P Age Sex (female) a Residential status House-mates Living alone Duration since diagnosis (months) Treatment experience Surgery a Chemotherapy Radiation therapy Hormone therapy Others Total score of HADS Anxiety Depression Total score of BCWI Future prospects Physical and symptomatic problems Social and interpersonal problems Entering patients association * Use of psychiatry or psychosomatic medicine before receiving diagnosis *** a Fisher s exact test. P < 0.1, *P < 0.05, **P < 0.01, ***P < Psychological distress The mean score of the total BCWI was (SD = 355.2) (Table 1). The mean scores for the BCWI subscales were future prospects, 41.3 (SD = 23.7), physical and symptomatic problems, 42.9 (SD = 27.8), and social and interpersonal problems, 41.8 (SD = 25.1). t-tests between users and non-users showed no significant difference in the total BCWI score and in scores for the three subscales (total: P = 0.354, future prospects: P = 0.332, physical and symptomatic problems: P = 0.544, and social and interpersonal problems: P = 0.323). Among all participants, the mean score for the HADS was 12.6 (SD = 8.7) (Table 1). Additionally, the mean score of the anxiety subscale was 6.6 (SD = 4.8) and the mean score for depression subscale was 6.0 (SD = 4.5). Based on the cut-off point (16), among participants, 28.1% classified as suffering from adjustment disorders, and 22.2% classified as suffering from major depression. t-tests between users and non-users showed no significant differences in total HADS scores or scores on the anxiety and depression subscales (total: P = 0.491, anxiety: P = 0.495, and depression: P = 0.556). Use of psychological support services Excluding participants who used only survivors associations, 50.9% of the remaining had experienced at least one type of psychosocial support service, while 46.0% had used several types after diagnosis (Table 2). Of the all of users, 13.5% of participants received cancer consulting and attended support centers, 12.9% attended support group inside and outside of hospital (respectively), 11.1% consulted a psychiatrist, 8.8% attended cancer salon inside and outside of hospital (respectively), 8.2% used psychosomatic medicine, 6.4% were counseled by a therapist, and 4.1% visited a psycho-oncology department. Most users were satisfied with the Table 2. Use of psychosocial support services N % Psychiatry (1) Psychosomatic medicine (2) Psycho-oncology (3) Cancer consulting and support center Counseling by therapist Group therapy Support group inside of hospital Support group outside of hospital Salon inside of hospital Salon outside of hospital Others or or 2 or A cancer salon is a type of self-help group. In other words, it is defined as a place where support provided by not mainly the medical staff but cancer survivors, and anyone can participate in discussions and exchange information about cancer as the beginning of various kinds of professional support (18). 1 or 2: psychiatry or psychosomatic medicine, 1 or 2 or 3: psychiatry or psychosomatic medicine or psycho-oncology. service they received (very satisfied: 24.1%, satisfied: 49.4%), and 56.3% continued to use their service of choice. Future intention and interest in using psychosocial support We asked non-users about their future intention and interest in seeking some form of psychosocial support. Although almost half may have been classified as suffering from adjustment disorder or

4 746 The use of psychosocial support services major depression, none had a concreteplantouseapsychosocial support service. About half of the non-users (N = 27, 46.6%) selected not planning a concrete schedule but intending to use it as necessary, 41.4% (N = 24) reported not planning a concrete schedule but interested in it, and 12.1% (N = 7) reported neither planning a concrete schedule nor being interested in such services. We asked non-users who were not members of a survivors association (N = 58) about their preferences regarding psychosocial support services. Cancer consulting and support centers were the most preferred forms of support service (N = 23, 39.7%), followed by psychosomatic medicine, counseling by a therapist and support groups in a hospital (respectively, N = 18, 31.0%) as shown in Table 3. Table 3. Preferences of psychosocial support services N % Psychiatry Psychosomatic medicine Psycho-oncology Cancer consulting and support center Counseling by therapist Group therapy Support group inside of hospital Support group outside of hospital Salon inside of hospital Salon outside of hospital Nothing We asked non-uses who did not enter the association (N = 58). Table 4. Demographics and other information among non-users The characteristics non-using survivors most in need of psychosocial support services Among non-users, 52.1% classified as suffering from adjustment disorders or major depression, including those who were members of survivors associations (N = 84, 49.1%) as shown in Table 4. We conducted t-tests or chi-square tests to examine differences in scores of BCWI and demographic information between those with adjustment disorders or major depression and those without. As a result, participants who suffered from adjustment disorders or major depression reported higher total BCWI and subscale scores than participants with neither adjustment disorder nor major depression (total: P = 0.003, future prospects: P = 0.007, physical and symptomatic problems: P = and social and interpersonal problems: P = 0.013). Discussion We investigated the use of psychosocial support services among Japanese breast cancer survivors, the intentions of those not currently using support services to use them in the future, and the characteristics of those most in need of psychological support services. Our survey results demonstrated that half of participants used psychosocial services, and that 16.4% of participants used either psychiatry and/or psychosomatic medicine, compared to 10.8% recorded in a previous study in Japan (9). Our results may be higher because almost all of the participants in our study were female, and previous research has indicated that females use such services more than males (13,14). Additionally, since all of our survey participants had added their name to a mailing list or joined a survivors association their access to information about support resources may have Non-users (N = 84) HADS 11 (N = 43) HADS 10 (N = 41) t/χ 2 P Mean/N SD/% Mean/N SD/% Mean/N SD/% Age Sex (female) a Residential status House-mates Living alone Duration since diagnosis (months) Treatment experience Surgery a Chemotherapy Radiation therapy Hormone therapy Others a Total score of HADS Anxiety Depression Total score of BCWI ** Future prospects ** Physical and symptomatic ** problems Social and interpersonal problems * Entering patients association Use of psychiatry or psychosomatic medicine before receiving diagnosis a a Fisher s exact test. P < 0.1, *P < 0.05, **P < 0.01, ***P <

5 Jpn J Clin Oncol, 2017, Vol. 47, No facilitated their decision to use such services. Furthermore, previous research indicated that a recommendation from an important person, such as family, friends, and medical staffs was an initial factor in cancer survivors deciding to use a psychosocial support service and the future intention of the use (13,19). In this research, those who joined the survivors association used psychosocial support services more. It was thought that joining a survivors association made it easier for participants not only to get information on psychosocial support services but also to have acquaintance; which made them easier to be recommended and to access psychosocial support services. Therefore, it is important to make a system that connects survivors having distress with appropriate psychosocial support services by using such survivors associations. On the other hand, it is also important to consider survivors with distress who have no connection to survivors associations. The perception of problems and the need for help among survivors has been reported as an important factor in studies of HSB (11,19,20). In this study, about half of those not using psychosocial support services were deemed to suffer from adjustment disorders or major depression and they reported higher total BCWI and subscale scores, on the other hand, none of these participants concretely planned to use these services in the future. In other words, a high degree of distress does not necessarily lead to the intention to seek out psychosocial support services. This finding consisted with that of a previous study (21). Similarly, a previous study indicated that problems synonymous with unmet need (22). Hence, cancer survivors who have high distress do not necessarily seek help because they do not feel able to confront their problems or because they may fail to adequately perceive them. In addition, it could be argued that these individuals approached their problem optimistically (23). Moreover, we can assume the following reasons for participants not seeking psychosocial support services. First, participants could easily obtain support from the mailing list that itself was a support resource. Additionally, participants who joined the association could get support from friends with cancer; that is, social support worked directly or as a buffer in this case. Previous study showed such relation (24). Second, other barriers to seeking support include the situation where people do not seek help because they want to solve their own problems (21), or the stigma of seeking help from a psychiatrist, or problems with schedules and access (20). The most popular psychosocial support services considered for future use among non-users were cancer consulting and support centers (39.7%) and a support group inside a hospital (31.0%); these services are easy to utilize as they are located inside the participants attending hospital. Additionally, psychosomatic medicine was selected more often than psychiatry and psycho-oncology department because of the stigma and negative images associated with these services. As expected, counseling by psychotherapists was also a popular selection, since they are located in the hospital and always available to survivors. Above all, although half of those not using available services suffered from psychological distress, they tended not to solve them. Therefore, we expect that not only distress but also other psychosocial and environment factors need to be considered, and that longitudinal studies must be conducted to examine the relationship between the use of psychosocial services and other factors. Additionally, identifying a specific situation that survivors need such services may be key to promoting HSB as half of the nonusers (46.6%) selected not planning a concrete schedule but intending to use it as necessary. Finally, our study has a limitation. Our range of participants was very limited as they all had relatively easy access to support resources. Therefore, it would be beneficial to conduct a survey covering a large variety of cancer survivors using more inclusive methods like online questionnaires. Acknowledgements We would like to thank to Ms Makiko Yamamoto, a founder of the Young Japanese Breast Cancer Network, the non-profit breast cancer organization and Japanese Medical Support Network (JAMSNET) for supporting our survey research. Funding This study was funded by Japanese Medical Support Network (JAMSNET) New York. Conflict of interest statement The authors received no financial support for the research, authorship and publication of this article. References 1. Agarwal J, Powers K, Pappas L, et al. Correlates of elevated distress thermometer scores in breast cancer patients. Support Care Cancer 2013;21: Akechi T, Uchida M, Nakaguchi T, et al. Difference of patient s perceived need in breast cancer patients after diagnosis. Jpn J Clin Oncol 2015;45: Walker J, Hansen CH, Martin P, et al. Prevalence, associations, and adequacy of treatment of major depression in patients with cancer: a cross-sectional analysis of routinely collected clinical data. 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