European Journal of Oncology Nursing 18 (2014) 323e328

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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

Quality of life and most prevalent unmet needs of Chinese breast cancer survivors at one year after cancer treatment Winnie K.W. So*, a, Ka Ming Chow a, Helen Y.L. Chan a, Kai Chow Choi a, Rayman W.M. Wan b, Suzanne S.S. Mak b, Sek Ying Chair a, Carmen W.H. Chan a a b

The Nethersole School of Nursing, The Chinese University of Hong Kong, Hong Kong Special Administrative Region Department of Clinical Oncology, Prince of Wales Hospital, Hong Kong Special Administrative Region

a b s t r a c t Keywords: Breast cancer survivors Supportive care needs Quality of life Chinese

Purpose: This study aims to examine the supportive care needs of Chinese breast cancer survivors, and investigate the relationships with participant characteristics and quality of life. Methods: A total of 163 participants were recruited from a local public hospital and completed a selfadministered questionnaire: the 34-item Supportive Care Needs Survey, the supplementary module of access to healthcare and ancillary support services, and the Functional Assessment of Cancer Therapy. Results: The five most commonly reported unmet needs were all in the health system information domain (range: 55e63%), and the majority (84%) reported at least one unmet need in relation to information on healthcare. Stepwise multivariable regression analyses revealed that the time spent on travelling from home to hospital, receiving hormonal therapy, and physical and psychological unmet needs were independently associated with poorer quality of life among the participants. Conclusions: Breast cancer survivors perceive various unmet needs, and health system information is the most common one. Those who have more unmet needs in the physical and psychological domains were more likely to perceive a poorer quality of life. Ó 2014 Elsevier Ltd. All rights reserved.

Introduction Breast cancer is the leading type of cancer in women of both developing and developed regions, and the second most commonly diagnosed form of cancer worldwide (Ferlay et al., 2010; World Health Organization, 2013). The incidence ranges from 21.6 per 100,000 women in China to 109.2 per 100,000 in Belgium, and it has been estimated that about 1.4 million cases are newly diagnosed globally each year (Ferlay et al., 2010). In Hong Kong, breast cancer is also the most common form of the disease among women. It accounts for 24.1% of all newly diagnosed cancer in Hong Kong women in 2010. The incidence rate has increased by 50%, from 2016 in 2001 to 3014 in 2010, with an average of 2476 newly diagnosed cases each year (Hospital Authority, 2013). Despite high incidence rates, increasing awareness of the value of early detection and continuing advances in treatment efficacy

* Corresponding author. The Nethersole School of Nursing, The Chinese University of Hong Kong, 7/F., Esther Lee Building, Shatin, New Territories, Hong Kong Special Administrative Region. Tel.: þ852 3943 1072; fax: þ852 2603 6041. E-mail address: [email protected] (W.K.W. So). http://dx.doi.org/10.1016/j.ejon.2014.03.002 1462-3889/Ó 2014 Elsevier Ltd. All rights reserved.

have greatly improved survival rates. In Hong Kong, two thirds of newly diagnosed cases are at stage I or II (Hospital Authority, 2013). The eight-year survival rate for a combination treatment of surgery and radiotherapy is about 86%, and it should increase further to 95% when five-year tamoxifen treatment and chemotherapy are added (Formenti et al., 2012). As more people survive, more attentions are drawn to support the needs of breast cancer patients in the transition period between end of treatment and survivorship and improve their quality of life (QoL). In fact, the portion of cancer patients expressing their unmet needs is highest in the post-treatment phase when compared with other phases in the cancer continuum (Harrison et al., 2009). Bonevski et al. (2000) identified five main areas of SCNs among cancer patients throughout of the cancer continuum: physical and daily living, psychological state, health system and information, patient care and support, and sexuality (Bonevski et al., 2000). Studies have been reported that the prevalence of unmet SCNs among cancer survivors varied from 30% to 50% across studies (Harrison et al., 2009). However, most of them focus on the needs of cancer patients on the diagnose and treatment phase, studies examined their needs immediate after treatment are lacking (Harrison et al., 2009; Lam et al., 2011). Although few studies only reported SCNs among

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cancer survivors in general (Armes et al., 2009; Pauwels et al., 2013; So et al., 2013), evidence for the factors influencing cancer survivors’ unmet SCNs may not be able to apply to specific cancer types, including breast cancer in the Chinese population. Understanding the prevalence of supportive care needs among Chinese breast cancer survivors is essential so that effective interventions can be provided to improve their QoL. The present paper is part of a larger study investigating the supportive care needs of 376 cancer survivors with different forms of the disease (response rate ¼ 93.8%) (So et al., 2013), and reports the needs only of breast cancer survivors and the association between their characteristics and quality of life. The research questions for this report were: 1. What are the five most common supportive care needs among breast cancer survivors? 2. Is there an association between these survivors’ characteristics and their needs and quality of life?

Methods Design and sample This cross-sectional study was conducted in 2010e11. Potential subjects were recruited from an outpatient oncology department in a teaching hospital in Hong Kong. Inclusion criteria for recruiting eligible subjects were: Chinese women of 18 or over at the time of diagnosis of breast cancer who had finished treatment (surgery, chemotherapy and radiation therapy) within a year, and were able to communicate in Cantonese or read Chinese. Excluded from the study were those who had a history of psychiatric disease, suffered from metastatic brain disease, had any other type or recurrence of cancer, or had received additional treatment within one year of the main treatment. Instrument A self-report survey in three parts was used: participants’ sociodemographic and clinical characteristics, supportive care needs (McElduff et al., 2004; So et al., 2011) and quality of life (Yu et al., 2000). Details of the instruments are reported elsewhere (So et al., 2013). Socio-demographic and clinical characteristics The following data were collected through participants’ selfreports: age, sex, marital status, highest level of education attained, employment status, household monthly income, travelling time from home to hospital, and family history of cancer. Similarly the following clinical data were collected from the participant’s medical record: time since diagnosis, stage of the disease, number of cancer treatment received, receiving hormone treatment, comorbidity, prognosis and family history of cancer. Chinese version of Supportive Care Needs Survey form (SCNS-SF34) The Chinese version of the SCNS-SF34 was used to measure unmet needs among breast cancer survivors. A total number of 34 items are divided into five domains: physical/daily living (5 items), psychological (10 items), patient care and support (5 items), sexuality (3 items), and health systems and information needs (11 items). A five-point rating scale (1 ¼ no need/not applicable, 2 ¼ no need/satisfied, 3 ¼ low need, 4 ¼ moderate need and 5 ¼ high need) is used to show levels of need for help over the past month. The internal consistency of each subscale was good (Cronbach’s alpha ranged from 0.78 to 0.92).

Confirmatory factor analysis indicated an adequate fit to the fivedomain factor structure (RMSEA ¼ 0.074, NNFI ¼ 0.96 and SRMR ¼ 0.080) (Li et al., 2011). Chinese version of the Functional Assessment of Cancer TherapyGeneral (FACT-G (Chi)) The FACT-G was used to examine the QoL of breast cancer survivors. It consists of four domains: physical, emotional, social and functional well-being. Each item is rated on a five-point scale (0 ¼ not at all; 1 ¼ a little bit; 2 ¼ somewhat; 3 ¼ quite a bit; 4 ¼ very much). Both the total score and the well-being subscale scores are analysed, with higher scores representing better functional status. The Chinese version of FACT-G demonstrated acceptable validity and reliability in a sample of 1262 Chinese cancer patients from three regional hospitals (Yu et al., 2000). Procedure The work was approved by the ethics research committee of the study institution. A research assistant first screened the follow up list and identified eligible potential participants at the out-patient clinic in the oncology department. The research assistant then

Table 1 Socio-demographic and disease characteristics of the study sample (n ¼ 163). Mean (SD)/median (IQR)/n (%) Socio-demographic characteristics Age (years)y Marital status Single/divorced/widowed Married/cohabitation Educational level No formal education/primary Secondary or above Employment status Unemployed/retired/homemaker Employed Household monthly income (HK$) 10,000 10,001e30,000 > 30,000 Living alone No Yes Time travelling from home to hospital (minutes)J Disease characteristics Time since diagnosis (months)J Stage of disease  II  III Number of cancer treatment 1 2 Receiving hormone treatment No Yes Any co-existing disease No Yes Cancer is under control or diminishing Yes No/unsure Family history of cancer No Yes

51.0 (9.2) 39 (23.9%) 124 (76.1%) 45 (27.6%) 118 (72.4%) 104 (63.8%) 59 (36.2%) 46 (28.6%) 69 (42.9%) 46 (28.6%) 149 (91.4%) 14 (8.6%) 40 (25e60)

14 (11e19) 129 (79.1%) 34 (20.9%) 9 (5.5%) 154 (94.5%) 49 (30.2%) 113 (69.8%) 106 (65.0%) 57 (35.0%) 122 (74.8%) 41 (25.2%) 91 (55.8%) 72 (44.2%)

Data marked with y are presented as mean (standard deviation) and with J as median (interquartile range), all others are presented as frequency (%).

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Table 2 Some unmet supportive care needs of individual item of SCN-34 among the study sample. Some unmet supportive care needs

n (%)

Physical Work around the home Lack of energy/tiredness Pain Feeling unwell a lot of the time Not being able to do the things you used to do Psychological Fears about the cancer spreading Uncertainty about the future Anxiety Worry that the results of treatment are beyond your control Learning of feel in control of your situation Concerns about the worries of those close to you Feelings about death and dying Feelings of sadness Feeling down or depressed Keeping a positive outlook Sexuality Being given information about sexual relationships Changes in sexual feelings Changes in your sexual relationships Patient care Hospital staff attending promptly to your physical needs Hospital staff acknowledging, and showing sensitively to, your feelings and emotional needs Reassurance by medical staff that the way you feel is normal More choice about which cancer specialists you see More choice about which hospital you attend Health system information Being informed about your test results as soon as feasible Being informed about cancer which is under control or diminishing (that is, remission) Being informed about things you can do to help yourself to get well Having one member of hospital staff with whom you can talk to about all aspects of your condition, treatment and follow-up Being treated in a hospital or clinic that is as physically pleasant as possible Being given explanations of those tests for which you would like explanations Being adequately informed about the benefits and side-effects of treatments before you choose to have them Being treated like a person not just another case Having access to professional counselling (e.g., psychologist, social worker, counselor, nurse specialist) if you, family or friends need it Being given information (written, diagrams, drawings) about aspects of managing your illness and side-effects at home Being given written information about the important aspects of your care

explained the purpose of the study and gained the consent of the patients for the initial screening of their eligibility of participating in the study. They were reassured that they could withdraw anytime, without giving any reason, without their medical care or legal rights being affected. For those who met the study criteria and agreed to participate in the study, they were asked to sign an informed consent. A note was placed on the front page of the participant’s medical record to inform the staff nurse that this participant is undergoing interview in an interview room. The research assistant then conducted a face-to-face interview using the structured questionnaire to ensure quality of collected information and reduce the refusal rate (Polit and Beck, 2012). The research staff read the question one by one and recorded the response of the participants. The staff also reviewed participants’ medical records to collect their clinical characteristics.

34 28 28 24 24

(20.9%) (17.2%) (17.2%) (14.7%) (14.7%)

36 36 30 29 25 24 16 16 15 15

(22.2%) (22.1%) (18.4%) (17.8%) (15.3%) (14.7%) (9.8%) (9.8%) (9.2%) (9.2%)

18 (11.0%) 14 (8.6%) 13 (8.0%) 66 60 57 42 36

(40.5%) (36.8%) (35.0%) (25.8%) (22.1%)

103 101 90 90 89 79 67 67 55 38 36

(63.2%) (62.0%) (55.2%) (55.2%) (54.6%) (48.5%) (41.1%) (41.1%) (33.7%) (23.3%) (22.1%)

SPSS 18.0 (SPSS Inc., Chicago), and all statistical tests were twosided, with a p-value < 0.05 considered statistically significant. Results Participants’ demographic and clinical characteristics Information on demographic and clinical characteristics of 163 breast cancer survivors is presented in Table 1. Overall, the mean age was 51.0 (SD ¼ 9.2). A large number of the subjects were married (76.1%), had completed a secondary education (72.4%), and were not employed (63.8%). More than two-third of the subjects were diagnosed with early stage of cancer (79.1%) and undergoing hormonal therapy (69.8%). The majority received at least two cancer treatments. See (Table 1).

Data analysis Univariate analyses of the relationship between the total score on FACT-G, the subscale scores in each of the SCNS-SF34 domains, and each of the participant characteristics were examined by means of Student’s t-test, one-way ANONA or Pearson correlation coefficient, as appropriate. All variables with p < 0.25 in univariate analyses were chosen for stepwise multivariable regression to determine variables that were independently associated with the total score on FACT-G. All statistical analyses were performed using

Five most common unmet supportive care needs The percentages of unmet needs of all individual items of the SCNS-34 and supplementary module are listed in Table 2. The five most commonly reported needs were all in the health system and information domain: (1) being informed that your results as soon as possible (63%), (2) being informed that a cancer which is under control (62%), (3) being informed that things you can do to help yourself to get well (55%), (4) having one member of the hospital staff with whom you can talk to about your condition, treatment

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Table 3 Association between quality of life (FACT-G total score) and patient characteristics. Univariate analysis

Multivariable analysis

Mean (SD)/correlation coefficient Socio-demographic characteristics Age (years) Marital status Single/divorced/widowed Married/cohabitation Educational level No formal education/primary Secondary or above Employment status Unemployed/retired/homemaker Employed Household monthly income (HK$) 10,000 10,001e30,000 > 30,000 Living alone No Yes Time travelling from home to hospital (minutes)b Disease characteristics Time since diagnosis (months)b Stage of disease  II  III Number of cancer treatment received 1 2 Receiving hormone treatment No Yes Any co-existing disease No Yes Cancer is under control or diminishing Yes No/unsure Family history of cancer No Yes Supportive care needs (SN-34) subscale scores Physical Psychological Sexuality Patient care Health system information

a

p-Value

B

SE

b

p-Value

0.114

0.151

NS

NS

88.5 (16.5) 90.2 (13.5)

0.516

e

e

e

e

89.4 (15.5) 89.9 (13.8)

0.819

e

e

e

e

89.3 (13.5) 90.6 (15.5)

0.562

e

e

e

e

87.8 (14.6) 90.6 (14.3) 90.9 (14.0)

0.504

e

e

e

e

89.8 (14.1) 89.5 (16.4) 0.178

0.949

e

e

e

e

0.023

3.966

1.414

0.162

0.006

0.032

0.684

e

e

e

e

89.5 (14.1) 91.0 (14.7)

0.586

86.6 (15.9) 90.0 (14.2)

0.486

e

e

e

e

86.4 (15.1) 91.1 (13.7)

0.054 3.812

1.780

0.123

0.034

89.9 (14.7) 89.5 (13.5)

0.854

e

e

e

e

89.6 (14.4) 90.5 (14.0)

0.725

e

e

e

e

89.2 (12.2) 90.5 (16.5)

0.576

e

e

e

e

0.292 0.279 NS NS NS

0.055 0.055 NS NS NS

0.383 0.362 NS NS NS

Quality of life and most prevalent unmet needs of Chinese breast cancer survivors at one year after cancer treatment.

This study aims to examine the supportive care needs of Chinese breast cancer survivors, and investigate the relationships with participant characteri...
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