Assessment of mental health literacy in patients with breast cancer.

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Original Article

Assessment of mental health literacy in patients with breast cancer

J Oncol Pharm Practice 0(0) 1–11 ! The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1078155215587541 opp.sagepub.com

Yin Ting Cheung1,2, Ying Ying Ong1, Terence Ng1,2, Yee Pin Tan3, Gilbert Fan3, Choi Wan Chan4, Alex Molassiotis4 and Alexandre Chan1,2

Abstract Introduction: Psychosocial distress is often underdiagnosed and undertreated among breast cancer patients due to the poor recognition of the associated symptoms and inadequate knowledge of the treatments available. Objective: To evaluate the mental health literacy of breast cancer patients by assessing (1) their ability to recognize the symptoms of anxiety, fatigue, depression, and cognitive disturbances, and (2) their knowledge of help-seeking options and professional treatments. Methods: In this multi-center, cross-sectional study, early-stage breast cancer patients receiving chemotherapy underwent four assessments to measure their levels of anxiety, depression, fatigue, and cognitive disturbances. With the aid of cancer-specific vignettes, a questionnaire was administered to evaluate their mental health literacy. Results: Fifty-four patients were recruited (77.7% Chinese, aged 52.7 8.5 years). Clinically significant anxiety (15.1%), fatigue (27.8%), and cognitive disturbances (25.9%) were more prevalent than depression (5.6%). Although the majority of the patients could recognize the symptoms of fatigue accurately (75.9%), less than half could identify those of anxiety (35.2%), depression (48.1%), and cognitive disturbances (48.1%). Patients were more receptive to help from their family members (score: 3.39 out of 4.00) and oncologists (score: 3.13) than from other mental health specialists, such as psychiatrists (score: 2.26) and psychologists (score: 2.19) in the management of their psychosocial distress. Approximately half of the patients indicated that embarrassment and fear were their main barriers to seeking professional treatment (55.6%). Conclusions: Our results suggest that the mental health literacy of breast cancer patients was inadequate. Intervention and management strategies could be implemented to teach these patients about evidence-based treatments and professional help that are specific to mental disorders.

Keywords Breast cancer, depression, fatigue, anxiety, cognitive disturbance, chemobrain, mental health literacy

Introduction The prognosis for early-stage breast cancer has vastly improved with effective treatment modalities such as surgery, chemotherapy, radiotherapy, and anti-hormonal therapy. In addition to the common physical adverse effects of anti-cancer treatment, patients with breast cancer experience psychosocial distress, such as anxiety, depression, fatigue, and cognitive disturbances.1–6 While it is widely known that anxiety and depression are prevalent in breast cancer patients after the time of diagnosis, recent studies have shown that these patients experience cancer-related fatigue and

1 Department of Pharmacy, National University of Singapore, Singapore 2 Department of Pharmacy, National Cancer Centre Singapore, Singapore 3 Department of Psychosocial Oncology, National Cancer Centre Singapore, Singapore 4 School of Nursing, The Hong Kong Polytechnic University, Hong Kong

Corresponding author: Alexandre Chan, PharmD, MPH, FCCP, BCPS, BCOP, Department of Pharmacy, National University of Singapore, 18 Science Dr 4, Block S4A, Level 3, Singapore 117543, Singapore. Email: [email protected]

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cognitive disturbances during their anti-cancer treatment. Cancer-related fatigue, which is designated in the literature as a distressing, persistent, subjective sense of physical, emotional, and/or cognitive tiredness or exhaustion related to cancer or cancer treatment, can affect cancer patients cognitively and emotionally.7,8 Cognitive disturbances, more commonly termed ‘‘chemobrain’’ or ‘‘chemofog’’ in the literature, refer to a subtle, yet notable change in cognitive functions after patients have completed their chemotherapy treatment. These cognitive changes involve a wide range of distress symptoms, such as a poor memory, an inability to maintain concentration, difficulty in thinking and muddled thought processes. Notably, the existing literature has shown that cancer-related fatigue, cognitive disturbances, anxiety, and depression can co-exist as a cluster of symptoms that can cause a negative impact on the health-related quality of life and daily functioning of breast cancer patients.9–11 Although psychosocial burden and cognitive disturbances are prevalent in breast cancer patients, these distresses are frequently underdiagnosed and undertreated for reasons such as limited interaction time between healthcare professionals and patients, the patients’ reluctance to disclose their distress, limited access to treatment, and the social stigma of mental illnesses.12–14 These findings entail major implications because the symptoms of various types of distress may worsen if effective psychological treatments are avoided or delayed. With the aim of improving the recognition of mental health illnesses and psychosocial distress in the general public, the concept of ‘‘mental health literacy’’ was introduced15 and refers to the ability of a person to recognize the symptoms of mental illnesses and be aware of the self-treatment and professional help available for mental illnesses.15,16 Poor mental health literacy has been identified as a major patient-related barrier to treatment, and studies have shown that only 39% of the general public in Australia and 11% of cancer patients in Japan could correctly identify the symptoms of depression.15,17 However, research to evaluate whether breast cancer patients are able to recognize the development of psychosocial distress during their anti-cancer treatment, as well as their knowledge of the availability of help-seeking options to manage this distress is lacking. We proposed that an understanding of their mental health literacy will aid the development of effective strategies to reduce the psychosocial burden and cognitive disturbances experienced by breast cancer patients. Hence, this study was designed to assess their ability to recognize the symptoms of anxiety, fatigue, depression, and cognitive disturbances that occur during their chemotherapy treatment, and to evaluate their knowledge of the availability of helpseeking options and professional treatments.

Methods Study design This multi-center, cross-sectional study was conducted between September 2013 and January 2014 at the ambulatory clinics of the National Cancer Centre Singapore and the KK Women’s and Children’s Hospital. These institutions treat more than 80% of the patients with breast cancer in Singapore. The study was approved by the Singhealth Institutional Review Board and written informed consent was obtained from all participants.

Patients All eligible participants were (1) diagnosed with early-stage breast cancer (Stages I to IIIA) by a medical oncologist, (2) over 21 years of age, (3) able to read and understand either English or Chinese, and (4) had undergone at least two treatment cycles (or six weeks in duration) of standard chemotherapy treatment for breast cancer at the time of recruitment. Patients who had underlying medical disorders that would limit their ability to provide informed consent were excluded.

Data collection procedure Patient demographics (age, educational level, and marital status) and clinical information (menopausal status, past medical history, and cancer stage) were collected. The concomitant use of complementary alternative medicines (CAM) (such as vitamins/nutritional supplements, traditional Chinese medicine (TCM)/ herbal medicine, Tai Chi, yoga, and qigong) and neuropsychiatric medications (anxiolytics, antidepressants, anti-epileptics, and hypnotics) was also documented.

Study tools At recruitment, the patients completed four sets of self-reported assessments to evaluate the severity of their anxiety, depression, fatigue, and perceived cognitive disturbances. A modified mental health literacy questionnaire was administered to evaluate their level of mental health literacy level.15 All interviews were conducted by trained bilingual investigators in either English or Chinese, based on the patients’ preference. Each patient interview took approximately 40 minutes? Depression. The Beck Depression Inventory (BDI), a 21-item instrument, was used to assess the severity of depression experienced by the patients during the previous seven days.18 Each symptom was rated by patients on a four-point scale ranging from 0 to 3 with increasing order of severity (e.g. from 0 indicating



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‘‘I do not feel sad’’ to 3 indicating ‘‘I am so sad and unhappy that I can’t stand it’’). The highest possible total score is 63 and the patients’ severity of depression is classified as normal (scores of 1–10), mild (scores of 11–16), borderline (scores of 17–20), moderate (scores of 21–30), severe (scores of 31–40), and extreme (scores of over 40). In this study, clinically significant depression was defined as a score of 17 and above.18 The English and Chinese versions of the BDI have been reported to be reliable and valid in patients with neuropsychiatric disorders.18,19

Anxiety. The Beck Anxiety Inventory (BAI), a 21-item instrument, was used to assess the severity of symptoms experienced by patients during the previous month.20 Each symptom was rated by the patients on a fourpoint scale ranging from 0 to 3 with increasing order of severity, where 0 represented ‘‘not at all’’, 1 represented ‘‘mild’’, 2 represented ‘‘moderate’’, and 3 represented ‘‘severe’’. Each item is descriptive of the subjective, neuropsychological, somatic, or panicrelated symptoms of anxiety. The total severity rating is summed across all 21 symptoms, with a maximum possible score of 63, and is classified as the absence of anxiety (scores of 0–7), and as mild (scores of 8–15), moderate (scores of 16–25), and severe (scores of 26–63) anxiety. In this study, clinically significant anxiety was defined as a score of 16 and above.1 The BAI was reported to have a high internal consistency with a Cronbach’s alpha of 0.92 for adults and a test–retest reliability of 0.75 after a one-week interval.20 Both the English and Chinese versions of the BAI were used in a previously published study to evaluate anxiety levels in the local breast cancer population.1

Fatigue. The Brief Fatigue Inventory (BFI), a nine-item instrument, was used to assess the severity of fatigue experienced by patients.21 Three items were used to assess the patients’ current level of fatigue at the time of interview, and their average and worst degrees of fatigue over the previous 24 h. Six items were used to assess how fatigue had interfered with different aspects of their lives during the previous 24 h. An 11-point Likert-type scale from 0 (‘‘no fatigue’’ or ‘‘does not interfere’’) to 10 (‘‘fatigue as bad as you can imagine’’ or ‘‘completely interferes’’) was used as the measurement tool. Based on the mean BFI score, patients’ fatigue was classified as no fatigue (score of 0), mild (scores of 1–3), moderate (scores of 4–6), and severe (scores of 7–10). In this study, clinically significant fatigue was defined as the presence of moderate to severe fatigue. Both the English and Chinese versions of BFI have been validated in previous studies.21,22

Perceived cognitive disturbances. The Functional Assessment of Cancer Therapy-Cognitive Function (FACT-Cog) version 3 was used to assess the patients’ perceived cognitive disturbances,23 and includes 37 items that are used to evaluate cognitive disturbances during the previous seven days in the domains of mental acuity, attention and concentration, memory, and verbal fluency. The questionnaire has four components: (1) perceived cognitive problems, (2) perceived cognitive abilities, (3) comments from others, and (4) the impact of cognitive impairments on quality of life. A five-point Likert-type scale is used and patients rate the frequency of the occurrence of each item during the previous week. The cut-off point for determining significant perceived cognitive impairment has not been established in the literature. Therefore, in this study, ‘‘significant perceived cognitive impairment’’ referred to patients whose total FACT-Cog score fell within the lowest quartile (25th percentile). The English and Chinese versions were validated within the Asian breast cancer population and were found to be reliable and equivalent.24 FACT-Cog subscales displayed high internal consistency, with a Cronbach’s alpha of as high as 0.929.24 Mental health literacy. The patients’ mental health literacy was assessed using a modified version of the original 47-item mental health literacy questionnaire developed by Jorm et al.15 The modification was made by the investigators and a trained neuropsychologist. The original questionnaire depicted a character named Jenny; the depiction was modified to cater to the local Asian context with which the patients could identify. This character was described as a typical middle-aged woman, who had recently been diagnosed with early-stage breast cancer and was currently receiving chemotherapy. The modified questionnaire included four cancer-specific vignettes, each of which described one of the four symptoms of psychosocial distress: anxiety, depression, fatigue, and cognitive disturbances (Table 1). With the aid of these vignettes, the questions aimed to evaluate the ability of the patients to recognize these four symptoms. After reviewing the vignettes, the patients were asked to identify the condition(s) that were described for each symptom of psychosocial distress. Their preferences for professional and non-professional help, medications, self-help strategies, and sources of information for the management of psychosocial distress were also evaluated. The patients were asked to give a score for each option ranging from 0 to 4, with ‘‘0’’ being the least preferred option, and ‘‘4’’ being the most preferred option. In addition to the options available in the original questionnaire, other elements such as a religious/spiritual minister, TCM, playing mahjong, and tai chi, were


To evaluate whether patients are able to recognize the distress afflicting the character in the vignette

To find out what are the most probable barriers that patients face when they seek professional treatment

To evaluate patients’ preferences for professional/ non-professional help

To evaluate patients’ preference of medications

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2

3

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Objectives


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What type of medication would be the most preferable to treat Jenny’s problems?

- Depressive mood/depression - Anxious symptoms/anxiety - Just stress from the cancer and treatment - Tiredness from the cancer and treatment - Cognitive impairment from the cancer and treatment - Dementia or Alzheimer’s disease - I don’t know - Jenny is not suffering from any problem - Jenny feels that she can handle these problems on her own - Jenny feels that the symptoms are ‘‘normal’’ and will cease after her cancer treatment - Jenny doesn’t believe that professional treatment is helpful - Jenny is embarrassed and fearful of sharing her problems with other people - Jenny does not know who she can seek treatment from - Jenny does not have enough financial help to seek treatment - Jenny is worried that her cancer treatment will be affected if she informs her cancer doctor about these problems - A typical family GP or doctor - Her oncologist - A nurse - A pharmacist - A social worker/counsellor - A psychiatrist - A psychologist - A traditional Chinese medicine practitioner - A close family member - A close friend - A religious or spiritual figure - Deal with the problems on her own - Anti-depressants or anxiolytics - Pain killers, such as aspirin, codeine or panadol - Sleeping pills - Vitamins and minerals - Traditional Chinese medicine/herbal medicines

Options available for patients’ choicea

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What types of professional or nonprofessional help would be the most preferred to treat Jenny’s problems?

What do you think are some barriers that may stop Jenny from seeking professional help?

What do you think Jennyb is experiencing? With the aid of the vignettes for: - Depression - Anxiety - Cancer-related fatigue - Cognitive disturbances

Questions that were posed to patients

Table 1. Objectives, questions, and available options outlined in the modified mental health literacy questionnaire.

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For questions 3–5, patients were to grade each option from 0 to 4, with 0 being the least preferred and 4 being the most preferred option. bJenny was the fictitious main character described in the vignette.

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- Become more physically active (such as playing sports or gentle exercise like brisk walking) - Engage in a hobby or leisure activity - Engage in relaxation and stress management activities, meditation, yoga, tai chi, qigong, music - Participate in mentally engaging activities such as playing mahjong, chess, Sudoku or computer games - Attend cancer support groups/discussions and talk to other cancer survivors - Engage in social activities, such as going out with friends or shopping - Going on a special diet or avoiding certain foods to help with the problems that Jenny is experiencing What type of self-help strategy would be the most preferable to treat Jenny’s problems? To evaluate patients’ preference for self-help strategies 5

Objectives

Table 1. Continued

Questions that were posed to patients

Options available for patients’ choicea

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integrated as options for treatment to cater to the Asian cultural preferences. The detailed objectives and options for each question are presented in Table 1.

Data analysis Descriptive statistics were used to summarize the patients’ characteristics and levels of psychosocial distress. To examine the prevalence of anxiety, depression, and fatigue, published cut-off points reported in the literature were used to classify those who had clinically significant psychosocial distress.1,18,21 Percentages were used to describe the proportion of patients who had correctly identified each psychosocial distress. The chi-squared test was used to compare the abilities to recognize the symptoms of distress in patients with or without clinically significant psychosocial distress. Patients’ preferences for professional and non-professional help, medications, self-help strategies, and sources of information for the treatment of psychosocial distress were reported using mean scores and standard deviations. All analyses were performed using the Statistical Package for Social Sciences (SPSS Inc., Chicago, IL) version 21.0 for Windows.

Results Patient characteristics Fifty-four breast cancer patients were analyzed in this study (Table 2). Most of the patients were Chinese (77.7%) and had been diagnosed with Stage II breast cancer (72.2%). The mean age (standard deviation) was 52.7 8.5 years. Approximately 55.5% of the patients had received a senior high school education, and most were married (81.5%) and unemployed (57.4%) at the time of the interview. More than half of the patients were receiving a taxane-based chemotherapy regimen at the time of the interview (53.7%). The mean length of time since the diagnosis and the initiation of chemotherapy were 21.0 8.0 and 13.2 6.0 weeks, respectively. Clinically significant fatigue, cognitive disturbances, anxiety, and depression were detected in 27.8%, 25.9%, 15.1%, and 5.6% of the patients, respectively.

Mental health literacy Recognition of psychosocial distress. Overall, the majority of the patients could accurately recognize the symptoms of fatigue (75.9%), but less than half of them were able to identify the symptoms of anxiety (35.2%), depression (48.1%), and cognitive disturbances (48.1%). Comparing the abilities to recognize symptoms of distress among patients with or without clinically



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Journal of Oncology Pharmacy Practice 0(0) Table 2. Summary of patient characteristics (N ¼ 54). Information

Characteristics

Number of patients (%)

Demographics

Mean age (years) SD Race - Chinese - Malay - Indian - Others (Filipino) Education level - Junior high school - Senior high school - Pre-university - Graduate/postgraduate Marital status - Single - Married - Widowed - Divorced Employment status - Unemployed/retired - Employed Menopausal status - Premenopausal - Postmenopausal Body Mass Index (kg/m2) SD Presence of comorbidities - No comorbidity - 1 comorbidity - 2 comorbidities - 3 comorbidities Cancer stage - Stage I - Stage II - Stage III Time since diagnosis (weeks) Time since initiation of chemotherapy (weeks) Chemotherapy regimen at the point of interview - ACa - DCb - Taxanes (Docetaxel/Paclitaxel) Complementary alternative medicine - None - TCM/herbal medications - Vitamins/nutritional supplements - Tai chi/qi gong/yoga

52.7 8.5

Clinical

Pharmacological

TCM: traditional Chinese medicine. a AC: Doxorubicin and cyclophosphamide (60/600 mg/m2 every 3 weeks). b DC: Docetaxel and cyclophosphamide (75/600 mg/m2 every 3 weeks).


42 (77.7) 5 (9.3) 5 (9.3) 2 (3.7) 11(20.4) 30 (55.5) 6 (11.1) 7 (13.0) 6 (11.1) 44 (81.5) 1 (1.9) 3 (5.5) 31 (57.4) 23 (42.6) 20 (37.0) 34 (63.0) 23.8 3.9 29 (53.7) 15 (27.8) 6 (11.1) 4 (7.4) 2 (3.7) 39 (72.2) 13(24.1) 21.0 8.0 13.2 6.0 19 (35.2) 6 (11.1) 29 (53.7) 27 (50.0) 5 (9.3) 18 (33.3) 4 (7.4)


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Table 3. Barriers that patients face when they seek for treatment for psychosocial distress (N ¼ 54). Barriers

N (%)

Embarrassment and fear of sharing problems with other people Lack the knowledge of where to seek treatment Insufficient finances to seek treatment Perception that symptoms are ‘‘normal’’ and will cease after the cancer treatment Does not believe professional treatment is helpful Worry that cancer treatment will be affected if the oncologist is informed about these problems

30 28 28 20 15 12

significant psychosocial distress, no significant differences in the identification of the various factors of psychosocial distress were observed between the two groups (p > 0.05). However, more than half of the patients who experienced significant anxiety were unable to recognize its symptoms (69.3%). Moreover, the majority of patients perceived that the anxietyrelated symptoms that were outlined in the vignettes were merely results of ‘‘stress’’ from the cancer and chemotherapy treatment (41.5%). The signs and symptoms of depression were accurately identified from the vignettes by 45.8% of patients who had clinically significant depression. More than half of the patients with significant cognitive disturbances could not identify its associated symptoms correctly (60.7%). Regardless of the presence or absence of clinically significant fatigue, the majority of the patients could identify the symptoms of fatigue in the vignettes (86.7% and 71.8%, respectively). Barriers to treatment. Patients identified embarrassment and fear as the most common barriers to seeking professional help (55.6%). Other important barriers included the lack of knowledge of where to seek help (51.9%) and not being able to afford the treatments (51.9%) (Table 3). Rating of professional and non-professional help. A close family member was perceived as the most helpful person for the management of psychosocial distress (score: 3.39), followed by an oncologist (score: 3.13), a close friend (score: 3.00), a pharmacist (score: 2.76), and a nurse (score: 2.72). Generally, patients viewed the help rendered by a TCM practitioner (score: 1.66) or a general practitioner (score: 1.72) as less beneficial and preferred other options. It is also important to note that patients gave relatively low ratings to mental health specialists, such as psychiatrists and psychologists. Patients also perceived that it would not be advisable to handle psychosocial distress on their own without seeking external help (score: 0.76) (Table 4). Rating of medication. Overall, the patients perceived that vitamins and minerals were helpful for the treatment

(55.6) (51.9) (51.9) (30.7) (27.7) (22.2)

and management of psychosocial distress (score: 2.31), followed by antidepressants/anxiolytics (score: 2.26), painkillers (score: 1.30), TCM, and herbal medicines (score: 1.11) (Table 4). Types of self-help strategy. Patients regarded relaxation activities, such as yoga (score: 3.26), social and leisure activities (score: 3.15), and light sports activities (score: 3.02), as helpful and the preferred self-help strategies (Table 4). Generally, patients also believed that culturally adapted self-help strategies, such as mahjong and qigong, were beneficial for the management of psychosocial distress.

Discussion This study evaluated the level of mental health literacy in patients with breast cancer. Our results suggested that a substantial proportion of patients were unable to recognize the occurrence of anxiety, depression, and perceived cognitive disturbances. More importantly, certain evidence-based management strategies, such as antidepressants and treatments offered by mental health specialists, were not perceived to be helpful for the management of psychosocial distress and cognitive impairment. Approximately two-thirds of the breast cancer patients questioned did not recognize the symptoms of post-chemotherapy cognitive disturbances. This lack of recognition of cognitive impairment-related symptoms could be due to the patients being unfamiliar with the cognitive issues associated with chemotherapy. We reported previously that patients with breast cancer had misconceptions that ‘‘chemobrain’’ referred to dementia or the metastasis of breast cancer to the brain.2 As increasingly more evidence supports the association between subtle cognitive impairment and treatment with chemotherapy, patients should be educated to be sufficiently aware of the symptoms of cognitive impairment, in addition to the usual physical adverse effects of chemotherapy. This would enable them to seek appropriate help when they experience cognitive disturbances during their treatment.



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Table 4. Types of professional/non-professional help, medication, and self-help strategy (N ¼ 54).

Types of professional/non-professional help

Types of medication

Types of self-help strategy

Options

Mean score (SD)a

A close family member An oncologist A close friend A pharmacist A nurse A religious/spiritual minister A social worker/counsellor A psychiatrist A psychologist A typical family GP or doctor A TCM practitioner Deals with problems on her own Vitamins and minerals Antidepressants/anxiolytics Pain killers TCM/herbal medicines Sleeping pills Engage in relaxation and stress management activities Engage in hobby/leisure activity Become more physically active Attend cancer support groups/discussions Participate in mentally engaging activities Engage in social activities Special diet

3.39 3.13 3.00 2.76 2.72 2.37 2.35 2.26 2.19 1.30 1.20 0.76 2.31 2.26 1.30 1.11 0.98 3.26 3.15 3.02 2.93 2.63 2.54 1.91

(0.98) (1.08) (1.10) (1.16) (1.07) (1.58) (1.57) (1.52) (1.46) (1.72) (1.66) (2.68) (1.37) (1.53) (1.68) (1.75) (2.06) (0.96) (1.00) (1.04) (1.18) (1.35) (1.27) (1.75)

SD: standard deviation; GP: general practitioner; TCM: traditional Chinese medicine. a The score for each option range from 0 to 4. Preferred options have higher scores than the less preferred options.

The signs and symptoms of anxiety were the least recognized by breast cancer patients compared with other distress, such as depression and fatigue. The patients also attributed the symptoms of anxiety to stress from the cancer and its treatment. It is important to note that a substantial proportion of people (43.4%) perceived the symptoms of anxiety as a foul mood but not as a mental health condition that requires medical attention.25 As the patients were unable to recognize the signs and symptoms of anxiety, they might not actively seek appropriate management. In the long run, this would cause a delay in obtaining timely and appropriate treatment which might increase the severity of symptoms and lead to a poorer quality of life.26 The patients’ lack of competency in identifying the symptoms of psychosocial distress may reflect the need for a rapid and valid instrument to help oncology practitioners to screen and identify at-risk cancer patients who experience distress during the course of their treatments. The Distress Thermometer is currently being tested and validated extensively among different cancer types

across many countries.27–29 This screening tool is a single-item scale accompanied by a problem list that can be used routinely in clinical practice because of its simplicity and ability to detect the level of distress. It is anticipated that with a planned and structured assessment of cancer patients’ distress levels in a clinical setting, distressed patients will be identified for appropriate professional help. The patients indicated a greater preference for close family members and friends to manage their psychosocial distress rather than mental health specialists, such as psychiatrists and psychologists. Other studies have also demonstrated that social support from family and friends was perceived to be more helpful than mental health specialists.15,30,31 Similarly, Japanese breast cancer patients mentioned that emotional support, such as company and words of encouragements from their family members, motivated them to receive treatment.32 The social stigma associated with mental illnesses and seeking help from mental health specialists results in the avoidance of raising the issue and seeking treatment.12



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Interestingly, the patients in this study approved the use of self-help strategies, such as CAM, for the management of their distress. The popularity of oral CAM might be attributed to the patients’ belief that it would increase their immunity and improve their health, leading to a reduced psychological burden.2,33,34 However, evidence that supports the efficacy of CAM to alleviate the specific symptoms is scarce.35 Other forms of CAM, such as practicing medical qigong, were also identified by patients to manage psychosocial distress. Patients felt that engaging in relaxation and stress management activities such as qigong was most useful. Chinese breast cancer patients are known to value the benefits of qigong and believe that it could improve the blood circulation to the brain.2 In another study, the practice of qigong has also been shown to be associated with significantly better perceived cognitive function and improved quality of life in breast cancer patients.36 Exercise has also been reported to be effective in decreasing the severity of fatigue in cancer patients during treatment.37 Overall, these self-help strategies that aid patients to relax, be more physically active and engage their minds were thought to be beneficial for the management of psychosocial distress and cognitive impairment. Due to the lack of scientific evidence to support the effectiveness of these self-help strategies, it is important to note that, currently, they should not be promoted as main modes of treatment for psychosocial distress. It is proposed that these ‘‘selfhelp strategies’’ could be used as a complement to evidence-based treatments such as pharmacological agents (anxiolytics and antidepressants) and cognitive behavioral rehabilitation administered by professional mental health specialists. Albeit preliminary, this study may have important implications to oncology pharmacy practice. Vitamins and minerals were more favored than antidepressants and anxiolytics to manage psychological distress. Similar results were reported in an Australian study where patients perceived antidepressants to be less beneficial.15 This could be due to the lack of recognition of the severity of conditions such as depression and anxiety, and hence, patients rendered antidepressants and anxiolytics as unnecessary. Another probable reason could be due to the social stigma that antidepressants and anxiolytics are addictive and they can only alleviate symptoms temporarily without treating the cause.38 In addition, patients might be afraid of taking these medications due to their fear of side effects. For this matter, oncology pharmacists play an important role in educating patients on the indications, benefits, and adverse effects related to effective pharmacological interventions. Notwithstanding the significance of these results, this study has a few limitations. Although the vignettes

used in the study were not validated, several other studies had utilized the vignettes to evaluate the changes in mental health literacy within general public over the last decade. The symptoms mentioned in the vignettes also matched the symptoms described in the Diagnostic and Statistical Manual of Mental Disorders: DSM-5,39 and thus accurately reflect the symptoms of psychosocial distress, such as depression and anxiety. The vignettes used in this study were modified to cater to the local Asian context so that local breast cancer patients could better identify with the character. Being a cross-sectional study, the evaluation of mental health literacy was only performed at one time point. Patients at different stages of anti-cancer treatment might experience different severities and perceptions of psychosocial distress. Patients who are diagnosed with a later stage of breast cancer might experience higher level of distress.1,11,39 Notably, education level may be an important factor that determines one’s mental health literacy. However, our exploratory analysis (not presented) did not observe an effect of education on mental health literacy. This is probably due to the limited sample size and the distribution of the education levels – majority of the patients belonged to the ‘‘nation-building generation’’ that was educated only up to senior high school level. Both the English and Chinese versions of the tools have been pooled for analysis in this study. Our research group has utilized both versions of the BFI and BAI on the local population of breast cancer patients,1,40 and demonstrated the measurement equivalence between the English and Chinese versions of FACT-Cog.24 As demonstrated previously,2 language may play a role in patients’ mental health literacy and perception of psychological distress. Given the modest sample size, it was not statistically meaningful to compare the differences in response between the English and Chinese patients in this study. It is emphasized that the findings of this study are preliminary and are meant to be hypothesis-generating, and hence need further verification using a larger and culturally more heterogeneous sample. In the future, a longitudinal study should be performed to evaluate changes in the mental health literacy of patients over the course of the anti-cancer treatment.

Conclusions The mental health literacy of Asian breast cancer patients was inadequate. A notable proportion of patients with clinically significant psychosocial distress were unable to accurately identify the corresponding symptoms. The helpfulness of mental health specialists and medications, such as antidepressants and anxiolytics, was not valued as highly as that of close family members, friends, and oncologists. It is anticipated that



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future intervention and management strategies could be implemented to help patients to better recognize the symptoms of anxiety, depression, and cognitive impairment, and to educate them on the benefits of evidencebased treatment options for their psychosocial distress.

Acknowledgements The authors would like to acknowledge Professor Anthony Jorm (University of Melbourne) for sharing the Mental Health Literacy Questionnaire with the research team, and research assistants Dr Maung Shwe and Ms. Gan Yan Xiang for their help with data collection. This study was presented as a poster presentation at the 2014 Multinational Association for Supportive Care in Cancer (MASCC) Meeting in Miami, USA.

Conflict of interest None declared.

Funding This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

References 1. Cheung YT, Lee HH and Chan A. Exploring clinical determinants and anxiety symptom domains among Asian breast cancer patients. Support Care Canc 2013; 21: 2185–2194. 2. Cheung YT, Shwe M, Tan YP, et al. Cognitive changes in multiethnic Asian breast cancer patients: a focus group study. Ann Oncol 2012; 23: 2547–2552. 3. So WK, Marsh G, Ling WM, et al. Anxiety, depression and quality of life among Chinese breast cancer patients during adjuvant therapy. Eur J Oncol Nurs 2010; 14: 17–22. 4. Byar KL, Berger AM, Bakken SL, et al. Impact of adjuvant breast cancer chemotherapy on fatigue, other symptoms, and quality of life. Oncol Nurs Forum 2006; 33: E18–26. 5. Van Esch L, Roukema JA, Ernst MF, et al. Combined anxiety and depressive symptoms before diagnosis of breast cancer. J Affect Disord 2012; 136: 895–901. 6. Lim CC and Devi MK. Anxiety in women with breast cancer undergoing treatment: a systematic review. Int J Evid Based Healthc 2011; 9: 213–235. 7. Priest RG, Vize C, Roberts A, et al. Lay people’s attitudes to treatment of depression: results of opinion poll for defeat depression campaign just before its launch. BMJ 1996; 313: 858–859. 8. Horneber M, Fischer I, Dimeo F, et al. Cancer-related fatigue: epidemiology, pathogenesis, diagnosis, and treatment. Dtsch Arztebl Int 2012; 109: 161–171. 9. Cheung YT, Shwe M, Chui WK, et al. Effects of chemotherapy and psychosocial distress on perceived cognitive disturbances in Asian breast cancer patients. Ann Pharmacother 2012; 46: 1645–1655.

10. Farrell C, Heaven C, Beaver K, et al. Identifying the concerns of women undergoing chemotherapy. Patient Educ Couns 2005; 56: 72–77. 11. Tel H and Doan S. Fatigue, anxiety and depression in cancer patients. Neurol Psychiatr Brain Res 2011; 17: 42–45. 12. Reavley NJ and Jorm AF. Stigmatizing attitudes towards people with mental disorders: findings from an Australian national survey of mental health literacy and stigma. Aust N Z J Psychiatr 2011; 45: 1086–1093. 13. Reavley NJ, Mackinnon AJ, Morgan AJ, et al. Stigmatising attitudes towards people with mental disorders: a comparison of Australian health professionals with the general community. Aust N Z J Psychiatr 2014; 48: 433–441. 14. McNair BG, Highet NJ, Hickie IB, et al. Exploring the perspectives of people whose lives have been affected by depression. Med J Aust 2002; 176(Suppl): S69–76. 15. Jorm AF, Korten AE, Jacomb PA, et al. ‘‘Mental health literacy’’ a survey of the public’s ability to recognise mental disorders and their beliefs about the effectiveness of treatment. Med J Aust 1997; 166: 182–186. 16. Jorm AF. Mental health literacy: empowering the community to take action for better mental health. Am Psychol 2012; 67: 231–243. 17. Okuyama T, Nakane Y, Endo C, et al. Mental health literacy in Japanese cancer patients: ability to recognize depression and preferences of treatments-comparison with Japanese lay public. Psychooncology 2007; 16: 834–842. 18. Beck AT, Ward CH, Mendelson M, et al. An inventory for measuring depression. Arch Gen Psychiatr 1961; 4: 561–571. 19. Yeung A, Howarth S, Chan R, et al. Use of the Chinese version of the beck depression inventory for screening depression in primary care. J Nerv Ment Dis 2002; 190: 94–99. 20. Beck AT, Epstein N, Brown G, et al. An inventory for measuring clinical anxiety: psychometric properties. J Consult Clin Psychol 1988; 56: 893–897. 21. Mendoza TR, Wang XS, Cleeland CS, et al. The rapid assessment of fatigue severity in cancer patients: use of the Brief Fatigue Inventory. Cancer 1999; 85: 1186–1196. 22. Wang XS, Hao XS, Wang Y, et al. Validation study of the Chinese version of the Brief Fatigue Inventory (BFIC). J Pain Symptom Manage 2004; 27: 322–332. 23. Wagner L, Sweet J, Butt Z, et al. Measuring patient self-reported cognitive function: development of the functional assessment of cancer therapy–cognitive function instrument. J Support Oncol 2009; 7: W32–W39. 24. Cheung YT, Lim SR, Shwe M, et al. Psychometric properties and measurement equivalence of the english and chinese versions of the functional assessment of cancer therapy-cognitive in asian patients with breast cancer. Value Health 2013; 16: 1001–1013. 25. Wu CY, Liu SI, Chang SS, et al. Surveys of medical seeking preference, mental health literacy, and attitudes toward mental illness in Taiwan, 1990–2000. J Formos Med Assoc 2014; 113: 33–41.



(OPP)


Cheung et al.

11

26. Wang PS, Berglund P, Olfson M, et al. Failure and delay in initial treatment contact after first onset of mental disorders in the national comorbidity survey replication. Arch Gen Psychiatr 2005; 62: 603–613. 27. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Distress management, Version 2, 2013. http://www.nccn.org/profes sionals/physician_gls/pdf/distress.pdf (assessed 10 January 2015). 28. Baken DM and Woolley C. Validation of the distress thermometer, impact thermometer and combinations of these in screening for distress. Psychooncology 2011; 20: 609–614. 29. O’Donnell E. The distress thermometer: a rapid and effective tool for the oncology social worker. Int J Health Care Quali Assur 2013; 26: 353–359. 30. Jorm AF, Korten AE, Rodgers B, et al. Belief systems of the general public concerning the appropriate treatments for mental disorders. Soc Psychiatr Psychiatr Epidemiol 1997; 32: 468–473. 31. Jorm AF, Nakane Y, Christensen H, et al. Public beliefs about treatment and outcome of mental disorders: a comparison of Australia and Japan. BMC Med 2005; 3: 12. 32. Makabe R and Hull MM. Components of social support among Japanese women with breast cancer. Oncol Nurs Forum 2000; 27: 1381–1390. 33. Shih V, Chiang JY and Chan A. Complementary and alternative medicine (CAM) usage in Singaporean adult cancer patients. Ann Oncol 2009; 20: 752–757.

34. Lengacher CA, Bennett MP, Kip KE, et al. Relief of symptoms, side effects, and psychological distress through use of complementary and alternative medicine in women with breast cancer. Oncol Nurs Forum 2006; 33: 97–104. 35. Kinsel JF and Straus SE. Complementary and alternative therapeutics: rigorous research is needed to support claims. Annu Rev Pharmacol Toxicol 2003; 43: 463–484. 36. Oh B, Butow PN, Mullan BA, et al. Effect of medical Qigong on cognitive function, quality of life, and a biomarker of inflammation in cancer patients: a randomized controlled trial. Support Care Canc 2012; 20: 1235–1242. 37. Schneider CM, Hsieh CC, Sprod LK, et al. Effects of supervised exercise training on cardiopulmonary function and fatigue in breast cancer survivors during and after treatment. Cancer 2007; 110: 918–925. 38. Priest RG, Vize C, Roberts A, et al. Lay people’s attitudes to treatment of depression: results of opinion poll for defeat depression campaign just before its launch. BMJ 1996; 313: 858–859. 39. American Psychiatric Association. Diagnostic and statistical manual of mental disorders: DSM-5 (5th ed.). Washington, DC: American Psychiatric Association, 2013. 40. Ng T, Cheung YT, Shew Maung, et al. The prevalence, severity and trajectory of fatigue with pro-inflammatory biomarkes in Asian breast cancer patients: a prospective cohort study. Support Care Canc 2014: 22 (suppl 1): abstr 0194.


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