Breast Cancer Res Treat (2011) 130:531–541 DOI 10.1007/s10549-011-1592-1
EPIDEMIOLOGY
Unmet supportive care needs: a cross-cultural comparison between Hong Kong Chinese and German Caucasian women with breast cancer Wendy W. T. Lam • Angel H. Y. Au • Jennifer H. F. Wong • Claudia Lehmann • Uwe Koch • Richard Fielding • Anja Mehnert
Received: 14 December 2010 / Accepted: 13 May 2011 / Published online: 27 May 2011 Springer Science+Business Media, LLC. 2011
Abstract The comparison of psychosocial needs across different cultural settings can identify cultural and service impacts on psychosocial outcomes. We compare psychosocial needs in Hong Kong Chinese and German Caucasian women with breast cancer. Completed questionnaires were collected from 348 Chinese and 292 German women with breast cancer for assessing unmet psychosocial needs (Supportive Care Needs Survey Short Form), psychological distress (the Hospital Anxiety and Depression scale), and listed physical and psychological symptoms. Only 11% of the participants reported not needing help for any of the 34 items. More German (14%) than Chinese women (8%) reported no unmet needs (v2 = 6.16, P = .013). With both samples combined, the Health System and Information domain unmet needs were the most prevalent, apart from one Psychological need domain item, ‘‘Fear about the cancer spreading.’’ Chinese and German samples differed significantly in prevalence and patterns of unmet psychosocial needs. Multivariate adjustment for demographic, clinical, and sample characteristics, psychological distress, and symptoms showed that significantly greater unmet Health system and Information, and Patient care and support domain needs, associated with the presence of W. W. T. Lam (&) A. H. Y. Au J. H. F. Wong R. Fielding Centre for Psycho-Oncology Research and Training, Department of Community Medicine and Unit for Behavioural Sciences, School of Public Health, The University of Hong Kong, 5/F, WMW Mong Block, Faculty of Medicine Building, 21 Sassoon Road, Pokfulam, Hong Kong e-mail:
[email protected] C. Lehmann U. Koch A. Mehnert Department of Medical Psychology, Centre of Psychosocial Medicine, University Medical Center Hamburg-Eppendorf, University of Hamburg, Martinistrasse 52, 20246 Hamburg, Germany
symptoms (b = .232, P \ .001), high HADS Anxiety (b = .187, P \ .001), higher education attainment (b = .120, P = .002), and Chinese sample membership (b = .280, P \ .001). Greater unmet Psychological, Physical and Daily Living, and Sexuality domain needs were associated with the presence of symptoms, psychological distress, and German group membership, among others. German women reported more anxiety (t = 10.45, P \ .001) and depression (t = 3.71, P \ .001). In post hoc analyses, German, but not Chinese women reporting greater anxiety and depression had greater unmet Psychological and Sexuality domain needs (P \ .001). It can be concluded that culturespecific differences in supportive care needs exist. Hong Kong Chinese women prioritize needs for information about their disease and treatment, whereas German Caucasian women prioritize physical and psychological support. Planning for cancer supportive care services or interventions to reduce unmet needs must consider cultural and/or health service contexts. Keywords Supportive care needs Psychological distress Culture Psychosocial support
Introduction International oncology guidelines and standards emphasize comprehensive patient-centered care [1, 2], implying primary, secondary and tertiary prevention, early detection, evidence-based curative, symptom and palliative interventions, rehabilitation, and aftercare, all of which addresses patients’ subjective needs for supportive interventions. Improving the quality of care requires evidencebased changes in the clinical routine and addressing supportive care needs.
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Supportive care needs reflect coping demands on affected individuals and families arising from cancer diagnosis, treatment and consequences throughout the illness trajectory [3]. Greater levels of unmet supportive care needs (‘‘need strength’’) are assumed to reflect greater perceived coping demand or impact intensity from the patient’s perspective. Identifying and addressing such needs is important because they are significantly associated with both psychological distress and poor quality of life [4–6], which in turn increase health care utilization and costs [6–9]. A need is defined as the requirement of some action or resource to achieve optimal well-being [10]. Hence, needs assessment offers a direct measure of patients’ support preference, identifying areas of unmet needs, and service gaps [11]. Unmet cancer care needs during diagnostic and treatment phases cover several areas or ‘‘domains.’’ Activities of daily living, information/communication, economic, sexuality, physical, psychosocial, health care, and support needs domains are commonly identified [3, 12, 13], with psychological and then health information unmet needs domains repeatedly identified as the two most prevalent [10, 14–19]. Post treatment about 25–30% of cancer patients report unmet supportive care needs, predominantly addressing psychological difficulties and fear of recurrence [20, 21]. More individuals probably express unmet needs post-treatment compared to any other time from diagnosis [3]. While some demands may be intractable or unrealistic, most needs can be anticipated, if known. While exploring mixed cancer populations [3] psychosocial research on supportive needs has neglected the differential impacts of cancer treatments, health care systems, and culture on supportive care needs. Caucasian cancer populations dominate studies of unmet supportive needs while for patients from other ethnic groups’ needs prevalence and patterns remain indistinct [4]. Ethnic minorities ubiquitously experience disproportionate negative disparities in cancer care [22, 23] amplifying unmet need [24]. Identifying the basis for these disparities is critical for improving care [22]. Cross-cultural and international comparisons of supportive care needs can reveal key cultural and health care system influences that can be efficiently targeted to improve comprehensive cancer care. Such influences are not straightforward. For example while Japanese breast cancer patients prioritize psychological unmet supportive care needs comparable to Caucasian women [4] Chinese breast cancer patients prioritize different needs and information [25]. African-American women present later [26] and die more frequently from breast cancer [27]. Their needs may differ. Latina American women desire more treatment and survivorship-related information, and minority American women with breast cancer report more social isolation compared to their Caucasian counterparts [28], suggesting that minorities face significant knowledge deficits [27, 29]. Acculturation appears influential [30].
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In 2008, an estimated 1.38 million women worldwide were newly diagnosed with breast cancer (10.9% of all incident cancers) [31]. Many experience unmet supportive care needs [4, 32, 33]. We lack comprehensive understanding of how cultural and service issues interact with the supportive care needs of breast cancer sufferers to facilitate psychosocial and clinical care. Contemporary cancer care services adopt similar management for breast cancer, though delivery styles can differ. Hong Kong and Germany both have post-industrial societies with comparable standards of breast cancer care different cultural attitudes to and delivery of care, attributable to training, patient demands, and cultural norms. Both countries provide psychosocial cancer support services, Germany through individualized referral, public cancer counseling centers, and rehabilitation programs and Hong Kong through both selective individualized referral and extensive NGOdelivered cancer patient resource networks, though use of both remains limited because of low utilization by oncologists. Importantly, both have validated common measures of unmet psychosocial needs [25, 34] and recent data on type and prevalence of such needs in breast cancer patients, enabling a secondary analysis compared the pattern, prevalence, and strength of unmet supportive care needs in Hong Kong Chinese and German Caucasians. We tested the null hypothesis that the prevalence and strength of unmet needs are comparable in Hong Kong Chinese and German Caucasian women diagnosed with breast cancer. If both priorities and prevalences are similar, then this would suggest that disease factors mostly drive unmet needs, whereas different priorities implicate cultural and/or service delivery factors, while prevalence differences point to demand-provision issues. Clarification of these issues informs service planning and delivery.
Methods Sample and settings Hong Kong sample Three hundred and sixty-nine Chinese women diagnosed with breast cancer were approached consecutively in clinical oncology/breast centre out-patient clinics at six Hong Kong public hospitals, between September 2008 and October 2009 for a study of unmet psychosocial needs. Based on ethics approval, clinic patient-appointment lists were provided by either the clinicians or nurses at participating hospitals. Inclusion criteria required confirmed breast cancer and Cantonese fluency. Exclusion criteria were linguistic or intellectual difficulties. Eligible women were recruited during out-patient follow-up appointments, giving informed written consent for and completing a face-to-face interview.
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German sample Three hundred and sixty-five Caucasian women with breast cancer were identified from two studies conducted by the Department of Medical Psychology, University Medical School Hamburg-Eppendorf between January 2008 and May 2010 based on local research ethics committee approval, and were invited to participate. Recruitment occurred in several outpatient cancer treatment facilities in Hamburg. Subject inclusion criteria required evidence of a malignant tumor, age older than 18 years, and capability to complete a battery of self-report measures. Exclusion criteria were the presence of severe cognitive and/or verbal and/or physical impairments that would interfere with a patient’s ability to give informed consent. Measures Both sets of studies used the following measures, enabling comparisons to be made. Supportive care needs The Supportive Care Needs Survey Short Form (SCNS-SF34) [35] measures patients’ perceived need strength on 34 needs classified into five domains: Physical and daily living (5 items), Psychological (10 items), Patient care and support (5 items), Health system and information (11 items), and Sexuality (3 items) needs. Patients rated each of these 34 needs for the previous month using a 5-point Likert scale (‘‘need strength’’): 1—No need: not applicable; 2—No need: satisfied; 3—Low need; 4—Moderate need; and 5—High need. Standardized Likert-summated scores ((sum of individual items minus number of domain questions) 9 100/(the number of questions in a domain) 9 (the value of the maximum response for each item - 1)) were used to calculate domain scores ranging from 0 to 100 [36]. Higher scores reflect greater unmet need strength. The Chinese [25] and German [34] translations of the SCNS-SF 34 were used. Both demonstrate good reliability and validity and are identically constituted and scored.
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caseness, and scores \8 represent non-cases [39]. This measure has been widely used in studies of cancer patients as it minimizes contamination by physical symptoms. Physical and psychological symptom burden In this secondary analysis, we could only use assessments common to each Chinese and German study. The presence or absence (‘‘symptom burden’’) of 17 common physical and psychological symptoms was measured in the German studies. We therefore extracted an identical set of the same 17 items from the Chinese version of the 32-item Memorial Symptom Assessment Scale Short-Form (MSAS-SF) [40] used to assess symptom burden in the Hong Kong sample. Hence, these same 17 symptoms common to both samples were used to compare symptom burden between samples based on the total symptom number present at interview. The possible range of symptom burden scores was 0–17. Demographic information Patients provided information on their age, marital status, employment, education attainment, treatment status, and the presence of metastatic disease. Data analyses We assessed unmet supportive care needs prevalence for each SCNS-SF34 item by calculating proportions of patients reporting a score 3 (need unmet) or more on the SCNS-SF34 5-point Likert scale. We examined differences in demographic and medical characteristics between the two samples using Chi-square test for categorical variables and t-tests for continuous variables. T-test was used to compare both the samples on the five unmet needs domain scores, psychological distress, and symptom prevalence. To adjust for possible confounding by sample differences, multivariate multiple regression was employed to compare the differences in each of the five psychosocial domains, adjusting for the effect of demographic and medical characteristics, psychological distress, and the presence of symptoms.
Psychological distress Participants completed Chinese [37] or German [38] versions of the 14-item Hospital Anxiety and Depression Scale (HADS), comprising two seven-item subscales, measuring anxiety and depression [39]. Both versions have good validity and reliability. Respondents rated each of the 14 items using a 4-point scale to indicate how they have felt in the past week. Total scores for each subscale range from 0 to 21, with higher scores indicating greater distress. Scores exceeding 10 on each subscale constitute case definition for psychological morbidity, scores of 8–10 indicate sub-clinical
Results Patient characteristics Of the 369 Chinese women approached 348 (94%) completed the study questions, as did 292/365 (80%) German women, 245 (98%) women in study 1, and 47 (41%) women in study 2. German women were older (mean 55.45 years) than Chinese women (mean 53.74 years, P = .034); occupation statuses (v2 = 109.563, P \ .001) also differed. More
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German women were either retired (29.1%) or were employed part-time (25.7%), whereas more Chinese women were housewives (29.3%) or unemployed (25.2%) (Table 1). The samples did not differ by proportions with metastatic breast cancer, recurrent breast cancer, or on active curative treatments. However, more Chinese women were currently receiving chemotherapy (38.4% Chinese vs. 30.1% German; v2 = 87.013, P = .029), whereas more German women were currently receiving radiation therapy (22.6% German vs. 10% Chinese; v2 = 18.870, P \ .001) and hormonal therapy (45.9% German vs. 30.8% Chinese; v2 = 15.259, P \ .001). More German (87.3%) than Chinese (79.1%) women had undergone surgery (v2 = 7.494, P = .006). Women reporting not having had surgery were receiving neo-adjuvant chemotherapy before surgery.
Table 1 Sociodemographic and clinical characteristics of the two samples
Unmet needs, psychological distress, and symptom presence: Chinese versus German samples German women reported significantly greater unmet psychosocial need strength in Psychological (t = -7.76, P \ .001), Physical and daily living (t = -5.96, P \ .001), and Sexuality (t = -8.65, P \ .001) domains, whereas Chinese women reported significantly greater unmet psychosocial need strength in Health system and information (t = 6.44, P \ .001) and Patient care and support (t = 4.71, P \ .001) domains. German women reported significantly higher HADS Anxiety (t = 10.45, P \ .001) and Depression (t = 3.71, P \ .001) scores. The two samples did not differ by reported symptom burden (Table 2).
Characteristics
Hong Kong Chinese (n = 348)
German Caucasian (n = 292)
Mean (SD)
53.74 (9.91)
55.45 (10.15)
Range
27–81
28–79
Single (%)
41 (11.8)
43 (14.7)
Married/cohabiting (%) Separated/divorced (%)
236 (68.2) 33 (9.5)
186 (63.7) 40 (13.7)
Widowed (%)
36 (10.4)
22 (7.5)
Full-time (%)
90 (26.1)
73 (25.0)
Part-time (%)
19 (5.5)
75 (25.7)
Age (years)
P-value
.034
Marital status
.150
\.001
Occupation
Retired (%)
48 (13.9)
85 (29.1)
Housewife (%)
101 (29.3)
35 (12.0)
Unemployed (%)
87 (25.2)
24 (8.2)
Less than 12 years of schooling (%)
296 (85.8)
242 (82.9)
12 or more years of schooling (%)
49 (14.2)
50 (17.1)
Education
.311
Treatment status No active treatment (%)
193 (56.6)
157 (53.8)
Active treatment (%)
148 (42.5)
135 (46.2)
.450
Chemotherapy (%*) Radiation therapy (%*)
131 (38.4) 34 (10.0)
88 (30.1) 66 (22.6)
Hormonal therapy (%*)
105 (30.8)
134 (45.9)
Missing (%)
7 (2.0)
0 (0)
Metastatic breast cancer (%)
80 (24.0)
62 (21.2)
.418
Recurrent breast cancer (%)
80 (23.0)
66 (22.6)
.861
Yes
273 (79.1)
25.5 (87.3)
No
72 (20.9)
37 (12.7)
.029 \.001 \.001
Type of breast cancer
* Percentages cannot add up to 100% since some patients were having more than one type of treatment
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Surgery completed
.006
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Table 2 Mean scores of unmet needs, psychological distress, and the presence of symptoms German Caucasian (n = 292)
Hong Kong Chinese (n = 348)
Mean
SD
Median (IQR)
Mean
SD
Median (IQR)
P-value
SCNS-SF 34 Psychological needs
30.70
28.25
22.5 (46.88)
16.51
17.23
12.50 (15)
\.001
SCNS-SF 34 Physical and daily living needs
26.13
24.62
20 (45)
16.34
16.46
10 (15)
\.001
SCNS-SF 34 Sexuality needs
19.96
27.42
5.46
13.56
0 (0)
\.001
SCNS-SF 34 Health system and information needs
32.75
31.95
22.73 (45)
47.60
25.79
43.18 (40.34)
\.001
SCNS-SF 34 Patient care and support needs
20.35
25.62
10 (35)
29.20
21.71
25 (25)
\.001
HADS Anxiety
6.33
3.99
6 (6)
3.28
3.36
2 (4)
\.001
HADS Depression Total number of symptoms
4.32 5.37
3.55 3.72
3 (4) 5 (6)
3.28 5.55
3.48 3.72
2 (4) 5 (5)
\.001 .092
Prevalence of perceived psychosocial needs More German (14%) than Chinese women (8%) reported no unmet needs (v2 = 6.16, P = .013). When ranked in descending order by prevalence of unmet need (SCNSSF34 items scored 3 or more) for Chinese and German samples combined, the ten most frequently reported unmet needs were Health system and information needs domain items, except for one Psychological needs domain item, ‘‘Fear about the cancer spreading.’’ When Chinese and German samples were considered independently (Table 3), of the top ten-ranked items in descending order, significantly more Chinese than German women expressed unmet need for (1) ‘‘Having one member of hospital staff to talk about all aspects of the medical condition’’ (v2 = 58.14, P \ .001), (2) ‘‘Being informed about things they can do to help themselves to get well’’ (v2 = 11.21, P = .001), (3) ‘‘Being informed about whether the cancer is under control’’ (v2 = 17.49, P \ .001), (4) ‘‘Being informed about the test results as soon as is feasible’’ (v2 = 11.15, P = .001), and (5) ‘‘Being given written information about important aspects of my care’’ (v2 = 18.69, P \ .001). Conversely, significantly more German women expressed unmet need for ‘‘Support in dealing with fears about cancer spreading’’ (v2 = 117.82, P \ .001). Mean domain item ranks for prevalence of unmet need in Chinese and German samples respectively were Health system and information 6.3 vs. 14.4; Psychological 21.5 vs. 11.1; Patient care and support 14.7 vs. 28; Physical and daily living 25.2 vs. 20.6; and Sexuality 31.7 vs. 23. German women (averaging 12 unmet needs) reported more unmet needs (t = 5.249, df = 620, P \ .001) than did Chinese women (averaging eight unmet needs). For each SCNS-34SF item rated as unmet (scored 3 or higher), German and Chinese reported need strengths for that item were compared. Significantly, more Chinese women expressed moderate-to-high unmet need for ‘‘…more
0 (33.33)
choice about which cancer specialists they see’’ (moderate/ high unmet need 77.5% Chinese vs. 50% German; v2 = 13.10, P = .001), ‘‘…more choice about which hospital they attend’’ (moderate/high unmet need 80.5% Chinese vs. 51% German; v2 = 10.95, P = .004), ‘‘…written information about the importance aspects of their care’’ (moderate/high unmet need 82.8% Chinese vs. 70.5% German; v2 = 6.78, P = .034), ‘‘…information about sexual relationships’’ (moderate/high unmet need 66.7% Chinese vs. 39.8% German; v2 = 6.99, P = .030), and ‘‘Being treated like a person, not just another case’’ (moderate/high unmet need 82.2% Chinese vs. 78.1% German; v2 = 7.121, P = .028). Next, we compared German and Chinese samples’ prevalence of ‘‘no need’’ (SCNS-34SF score = 1) or ‘‘met need’’ (SCNS-34SF scores = 2) items (Table 3). More Chinese than German women reported no need regarding ‘‘Fear of cancer spreading,’’ ‘‘Lack of energy/tiredness,’’ ‘‘Feelings of sadness,’’ ‘‘Concerns about worries of those close to you,’’ ‘‘Feelings about death and dying,’’ ‘‘Keeping a positive outlook,’’ ‘‘Changes in sexual feelings,’’ ‘‘Information about sexual relationships,’’ and ‘‘More choice about which hospital to attend.’’ On all the items significantly, more Chinese than German women indicated available help had satisfied their expressed need (met need). Multivariate analyses To examine if the five psychosocial unmet needs domains differed by sample characteristics and to minimize confounding, multiple regression analyses fully adjusted by demographic and medical characteristics significant in univariate analyses and treatment type, anxiety, depression, and symptom burden were performed for needs domain (Table 4). Variable entry into each model was initially by the stepwise method with a P value for entry of .05 and for removal of .1, subsequently confirmed by forced entry.
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Table 3 Ratings of the psychosocial unmet need, by percentage rating each item scored of 3 or more on the 5-point Likert scale SCNS items
Total sample N = 640 Rank, unmet need %
Hong Kong Chinese (n = 348)
No need (%)
German Caucasian (n = 292)
Need met (%)
Unmet needs (%)
Rank, unmet need
No need (%)
Need met (%)
Unmet needs (%)
Rank, unmet need
Having one member of hospital staff with whom you can talk to about all aspects of your condition, treatment and follow up1**
1
48 (13.8)
58 (16.7)
242 (69.6)
1
148 (51.9)
25 (8.8)
112 (39.1)
9
Being informed about things you can do to help yourself to get well1**
2
44 (12.6)
100 (28.7)
204 (58.6)
3
122 (42.8)
34 (11.9)
129 (44.7)
4
Being informed about cancer which is under control or diminishing (that is, in remission)1**
3
31 (8.9)
110 (31.6)
207 (59.5)
2
135 (47.7)
27 (9.5)
121 (42.3)
5
Being informed about your test results as soon as feasible1**
4
31 (8.9)
110 (31.6)
185 (53.2)
4
146 (51.0)
26 (9.1)
114 (39.5)
8
Being given written information about the important aspects of your care1**
5
28 (8.0)
135 (38.8)
174 (50.0)
5
165 (57.3)
28 (9.7)
95 (32.7)
23
Being given explanations of those tests for which you would like explanations1**
6
91 (26.1)
83 (23.9)
150 (43.1)
6
140 (49.0)
40 (14.0)
106 (36.7)
14
Being adequately informed about the benefits and side-effects of treatments before you choose to have them1**
7
45 (12.9)
153 (44.0)
139 (39.9)
8
134 (46.9)
44 (15.4)
108 (37.3)
12
Being given information (written, diagrams, drawings) about aspects of managing your illness and side-effects at home1**
8
44 (12.6)
165 (47.4)
145 (41.7)
7
157 (54.7)
31 (10.8)
99 (34.0)
16
Fears about the cancer spreading2**
9
125 (35.9)
78 (22.4)
57 (16.4)
17
95 (33.0)
27 (9.4)
166 (57.1)
1
Being treated like a person not just another case1**
10
132 (37.9)
159 (45.7)
118 (33.9)
10
181 (63.3)
9 (3.1)
96 (33.3)
21
Having access to professional counseling (e.g., psychologist, social worker, counselor, nurse specialist) if you, your family or friends need it1*
11
55 (15.8)
175 (50.3)
120 (34.5)
9
166 (57.8)
28 (9.8)
93 (32.1)
25
Hospital staff attending promptly to your physical needs3**
12
165 (47.4)
63 (18.1)
107 (30.7)
12
163 (56.8)
27 (9.4)
97 (33.4)
19
Being treated in a hospital or clinic that is as physically pleasant as possible1**
13
60 (17.2)
181 (52.0)
97 (27.9)
14
181 (63.1)
10 (3.5)
96 (33.3)
21
Hospital staff acknowledging, and showing sensitivity to, your feelings and emotional needs3**
14
42 (12.1)
209 (60.1)
110 (31.6)
11
185 (64.2)
21 (7.3)
82 (28.2)
28
Uncertainty about the future2** Worry that the results of treatment are beyond your control2**
15 16
63 (18.1) 164 (47.1)
175 (50.3) 131 (37.6)
53 (15.2) 58 (16.7)
18 16
139 (48.4) 158 (55.1)
16 (5.6) 8 (2.8)
132 (45.4) 121 (41.7)
3 6
Lack of energy/tiredness4**
16
194 (55.7)
96 (27.6)
37 (10.6)
23
114 (39.7)
31 (10.8)
142 (48.9)
2
More choice about which cancer specialists you see3**
18
139 (39.9)
172 (49.4)
102 (29.3)
13
219 (76.3)
12 (4.2)
56 (19.3)
33
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Table 3 continued SCNS items
Total sample N = 640 Rank, unmet need %
Hong Kong Chinese (n = 348)
Reassurance by medical staff that the way you feel is normal3**
19
Learning to feel in control of your situation2**
No need (%)
German Caucasian (n = 292)
Need met (%)
Unmet needs (%)
Rank, unmet need
No need (%)
Need met (%)
Unmet needs (%)
Rank, unmet need
155 (44.5)
91 (26.1)
70 (20.1)
15
185 (64.5)
15 (5.2)
87 (29.9)
26
20
88 (25.3)
190 (54.6)
41 (11.8)
22
164 (57.3)
10 (3.5)
112 (38.5)
10
Feeling of sadness2*
20
214 (61.5)
93 (26.7)
36 (10.3)
24
139 (48.3)
32 (11.1)
117 (40.1)
7
Concerns about the worries of those close to you2**
22
209 (60.1)
103 (29.6)
35 (10.1)
25
160 (55.7)
17 (5.9)
110 (37.9)
11
Feeling down and depressed2*
23
148 (42.5)
165 (47.4)
35 (10.1)
25
161 (55.7)
23 (8.0)
105 (36.0)
15
Not being able to do the things you used to do4** Pain4**
24
201 (57.8)
112 (32.2)
50 (14.4)
19
170 (59.2)
33 (11.5)
84 (28.9)
27
25
184 (52.9)
114 (32.8)
34 (9.8)
27
166 (58.0)
22 (7.7)
98 (33.7)
18
Anxiety2**
26
191 (54.9)
123 (35.3)
47 (13.5)
20
167 (58.0)
41 (14.2)
80 (27.5)
29
Work around the home4
27
164 (47.1)
137 (39.4)
32 (9.2)
29
148 (51.6)
45 (15.7)
94 (32.3)
24
Feelings about death and dying2**
28
237 (68.1)
79 (22.7)
24 (6.9)
30
176 (61.1)
13 (4.5)
99 (34.0)
16
Keeping a positive outlook2
29
201 (57.8)
123 (35.3)
7 (2.0)
33
151 (52.4)
30 (10.4)
107 (36.9)
13
Changes in sexual feelings5*
30
300 (86.2)
41 (11.8)
8 (2.3)
32
175 (61.6)
12 (4.2)
97 (33.4)
19
To be given information about sexual relationships5
31
287 (82.5)
53 (15.2)
24 (6.9)
30
204 (71.1)
5 (1.7)
78 (26.8)
31
More choice about which hospital you attend3**
32
313 (89.9)
11 (3.2)
46 (13.2)
21
225 (78.1)
8 (2.8)
55 (18.9)
34
Feeling unwell a lot of the time4**
33
232 (66.7)
70 (20.1)
33 (9.5)
28
212 (73.9)
8 (2.8)
67 (23.0)
32
Changes in your sexual relationships5**
34
208 (59.8)
107 (30.7)
7 (2.0)
33
195 (68.4)
10 (3.5)
80 (27.5)
29
1
Health system and information needs; 2 Psychological needs; 3 Patient care and support needs; 4 Physical and daily living needs; 5 Sexuality needs; For comparisons between extent of no need and need met for Hong Kong and German samples, Chi-square analysis is significant at the * P \ .01 level or ** at the P \ .001 level
Psychological needs domain Greater unmet Psychological needs independently associated with high HADS Anxiety (b = .427, P \ .001) and Depression (b = .135, P = .002) scores, greater symptom burden (number of symptoms) (b = .160, P \ .001), higher education attainment (b = .111, P \ .001), current chemotherapy (b = .077, P = .012), and German sample membership (b = .155, P \ .001). This model accounted for 49% of the variance in Psychological needs domain scores (F = 94.46, df = 6, P \ .001).
variance in Health system and information needs domain scores. Physical and daily living needs domain Greater unmet needs scores independently associated with greater symptom burden (b = .385, P \ .001), HADS Depression scores (b = .136, P = .001), breast cancer recurrence (b = .098, P = .005), and German sample membership (b = .222, P \ .001). This model accounted for 29% (F = 61.159, df = 4, P \ .001) of the variance in Physical and daily living needs domain scores.
Health system and information needs domain Patient care and support needs domain Greater unmet needs on this domain independently associated with greater symptom burden (b = .232, P \ .001), high HADS Anxiety scores (b = .187, P \ .001), higher education attainment (b = .120, P = .002), and Chinese sample membership (b = .280, P \ .001). This model accounted for 20% (F = 38.768, df = 4, P \ .001) of the
Greater unmet needs scores independently associated with greater symptom burden (b = .221, P \ .001), high HADS Anxiety scores (b = .226, P \ .001), higher education attainment (b = .102, P = .009), not receiving hormonal therapy (b = -.076, P = .044) and Chinese sample
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Table 4 Multiple regression results of factors associated with unmet needs b values
Psychological needs
Health system and information needs
Physical and daily living needs
Patient care and support needs
Sexuality needs
Country origin German
Referent
Referent
Referent
Referent
Referent
Chinese
-.155***
.280***
-.222***
.225***
-.293***
HADS Anxiety
.427***
.187***
–
.227***
.198***
Depression
.135**
–
.136***
–
–
.160*** –
.232*** –
.385*** –
.213*** –
.182*** -.100*
Total number of symptoms Age Marital status Married
Referent
Referent
Referent
Referent
Referent
Single
–
–
–
–
-.100**
Divorced
–
–
–
–
-.104**
Widowed
–
–
–
–
–
Occupation Employed
Referent
Referent
Referent
Referent
Referent
Housewife
–
–
–
–
–
Unemployed
–
–
–
–
–
Part-time
–
–
–
–
–
Retired
–
–
–
–
–
Education No education/primary Secondary/tertiary education Breast cancer recurrence
Referent
Referent
Referent
Referent
Referent
.111*** –
.120** –
– .098**
.099* –
.101* – –
Chemotherapy
.077*
–
–
–
Radiation therapy
–
–
–
–
Hormonal therapy
–
–
–
-.076*
Metastatic breast cancer
–
–
–
–
–
Breast surgery
–
–
–
–
.099**
Significance: * P \ .05, ** P \ .01, *** P \ .001. Omitted b values for this table are absent because in Stepwise regression, these variables are excluded from final models
membership (b = .235, P \ .001). This model accounted for 20% (F = 29.032, df = 5, P \ .001) of the variance in Patient care and support needs domain scores. Sexuality domain Greater unmet needs scores independently associated with higher HADS Anxiety Scores (b = .196, P \ .001), greater symptom burden (b = .182, P \ .001), younger age (b = -.100, P = .010), higher education attainment (b = .101, P \ .001), having completed surgery (b = .099, P = .007), being married (compared to being single: b = .266, P = .008; compared to being divorced: b = .104, P = .005), and German sample membership (b = .293, P \ .001). This model accounted for 24% (F = 24.612, df = 8, P \ .001) of the variance in Sexuality needs domain scores.
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Post hoc analyses Because German women reported significantly higher HADS and needs domain scores, we tested post hoc, if country of origin moderated the relationship between psychological distress and supportive care needs. For each of the five unmet need scores we entered the cross-product (country of origin 9 HADS Anxiety/Depression) into a hierarchical regression model after entering each main effect in the first step. Significant interactions, evidencing moderation by country of origin, occurred for two of the five needs domains. Relations between anxiety and unmet Psychological needs (Fig. 1), between depression and unmet Psychological needs (Fig. 2), and between anxiety and unmet Sexuality needs (Fig. 3) were all stronger (all interactions P \ .001) for the German than the Chinese samples.
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Fig. 1 Country as a moderator of anxiety and psychological unmet needs
Fig. 2 Country as a moderator of depression and psychological unmet needs
Fig. 3 Country as a moderator of anxiety and sexuality unmet needs
Discussion We compared reported unmet needs of German Caucasian and Hong Kong Chinese women diagnosed with breast cancer. Both samples were recruited using different protocols and differed sociodemographically. German women
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were older and more were retired or worked part-time whereas more Chinese women were housewives or unemployed. The two samples were clinically comparable in terms of proportions of new, recurrent, and metastatic disease. Chinese women were more likely to be receiving chemotherapy, some before their surgery, compared with German women who were more likely to be receiving radiotherapy, suggesting that German women were later in the treatment cycle than were Hong Kong women. Though 16% of the German sample was recruited from palliative care settings, all were receiving active maintenance treatment, as were some of the Chinese women diagnosed with advanced disease. Some differences emerged in multivariate analyses indicating that treatment and disease recurrence influenced the patterns of Psychological, Physical and daily living and Sexuality needs, but not other domains. Reported unmet needs for these two groups of women varied considerably. Relative to Chinese women, German women’s standard unmet needs scores identified coping needs regarding psychological, sexual, and physical and daily living impacts. Mean domain rankings also identified unmet need related to health service delivery. Chinese women’s unmet needs addressed health service delivery, particularly disease and treatment information-related support, and patient care/support needs. Psychological, daily living, and sexuality needs were fewer. These different concerns suggested that Chinese women desired practical information and support, German women psychosocial information. German women averaged more unmet needs than Hong Kong women, but amongst women reporting unmet needs, unmet need strength was comparable between the samples, with some exceptions. Among Chinese women expressing unmet needs, choice of hospital and cancer specialist, information about sexual relationships, and continuity and promptness of information care were prioritized, consistent with other studies of Chinese women with breast cancer [25, 41]. Despite expressing day-to-day living and psychological needs, many Chinese respondents perceived adequate existing support for dealing with these. Hong Kong breast cancer patients may rely on health care professionals as information providers, but not as providers of psychosocial support [41], Japanese cancer patients show similar reluctance to discuss psychosocial issues unless raised by the physician [42], while Asian-American women report lower needs for social support than their Anglo counterparts [43]. Both samples received comparable standards of oncology care implicating interpersonal and cultural differences. Cultural variation in social and personal values, such as family support roles and attitudes regarding cancer or sexuality, and care service differences, such as communications competence among clinicians may account for observed differences.
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Individualistic (Hong Kong) versus social-welfare-orientated (Germany) societies may generate different expectation of how unmet need is remedied. German women identified need for help in coping with the psychosocial impacts and threats from diagnosis and possible disease progression, 20–35% needing more health-systems-related information. Caucasian cancer patients report significant unmet psychological needs [3, 10, 44] reflecting desire for psychological support, especially regarding possible disease progression. This analysis shows many also desire more health information. Post hoc analysis indicates that more anxious and depressed German but not Chinese women reported significantly greater unmet psychological needs, reflecting an interaction between culture and psychological distress. Chinese breast cancer patients may cope differently when faced with anxiety and depression. This warrants further exploration. Causality remains unclear. While German women identified more unmet needs on average, Chinese women reported greater need strength, primarily regarding health care information, implying inadequate or ineffective information care within Hong Kong oncology settings. Both Chinese and German women identified continuity of care—having one member of staff to keep them informed—as their top unmet need, reflecting the critical importance of the patient–professional relationship in cancer care and the multiplicity of functions this serves [45]. German women reported stronger unmet sexualitydomain needs than did Chinese women, over 90% of whom expressed no sexuality-related concerns, reflecting Chinese women’s lesser emphasis on, or lower willingness to acknowledge sexuality issues compared with their German counterparts. However, for most German women, unmet sexuality needs were lower priority. Limitations of this secondary analysis include prominent sample differences. German women were possibly further along the disease trajectory, accounting for some reported differences. Psychosocial support services and access/utilization differences between locations, different translations of common instruments, particularly those which assess the symptom burden are possible sources of variance. Most multivariate models accounted for only around 20–29% of the variance, indicating that significant unmeasured influences remain to be described. Because the multiple v2 tests reported in Table 3 increase type I error risk, ‘‘no-need/metneed’’ findings should be considered tentative. Finally, all the cross-sectional data limit interpretive possibilities, and we were unable to unambiguously separate cultural from service factors possibly influencing results. This cross-cultural comparison illuminates distinctive differences in needs that Hong Kong Chinese and German Caucasian women face during breast cancer. Cancer services or interventions targeting unmet needs, cultural,
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and/or service differences that can generate different patterns of need for the same disease group are required. Acknowledgments Hong Kong: This study was supported by a grant from the Germany/Hong Kong Joint Research Scheme sponsored by the Research Grants Council of Hong Kong and the Germany Academic Exchange Service of Germany (Reference no. G_HK027/09 and a grant from The Hong Kong Cancer Fund). The authors would like to thank Pheebie Kwok, Ella Ho, April Chiu, Teresa Wong, and Wylie Li for their valuable contributions to data collection and management, and the women who participated in the study. The authors would also like to thank Professor Afaf Girgis for providing us with the scoring instructions of the SCNS-SF-34. Finally, the authors thank the Culturally and Linguistically Diverse (CALD) study team, headed by Professor Phyllis Butow, for the use of the translated Chinese version of the SCNS-SF-34. Germany: This research has been supported by the grants from the Barbara and Michael Hell Stiftung Hamburg and the German Cancer Aid, Germany. The Psycho-Oncological and Palliative Care Research Group at the Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, is funded by grants from the Fritz und Hildegard Berg-Stiftung, and the Stiftung Wissenschaft Hamburg within the Donors’ Association for the Promotion of Sciences and Humanities in Germany. Conflict of interest peting interests.
The authors declare that they have no com-
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