Age and functional ability are associated with self-care practices used by women with metastatic breast cancer: an exploratory study

Authors

  • Rebecca L Norris BA,

  • Qin Liu PhD,

  • Susan Bauer-Wu PhD, RN


Rebecca L Norris
Department of Psychology
The University of Massachusetts Boston
100 Morrissey Blvd
Boston, MA 02132
USA
E-mail: rebecca.norris001@umb.edu

Abstract

Aim.  To describe self-care practices used by women with metastatic breast cancer and to examine relationships between self-care practices and patient characteristics.

Background.  Self-care involves the voluntary use of activities to promote one’s own well-being. Individuals with advanced cancer are faced with multiple psychological and physical stressors. It is important to identify personal characteristics that are likely to influence patients’ preferred self-care strategies.

Design.  This cross-sectional descriptive study was a secondary analysis of baseline data obtained from a longitudinal intervention trial. A convenience sample of stage IV breast cancer patients (N = 173) completed self-administered questionnaires. Recruitment and data collection took place between April 2000–March 2003.

Results.  This study demonstrates a high use and variety of self-care practices in this sample of women with advanced-stage breast cancer: confiding in family and friends, spiritual practices, physical exercise, group support activities and journal writing. Multivariate logistical regression analyses revealed that functional ability and age significantly predicted participation in self-care activities. Higher levels of physical functioning were associated with use of physical exercise and lower levels of physical functioning were associated with journal writing. Additionally, younger age predicted participation in yoga/meditation, cancer retreats, cancer support and web-based programmes.

Conclusions.  Findings from this study suggest that metastatic breast cancer patients frequently engage in a variety of self-care practices that may be influenced by personal characteristics. Future clinical self-care interventions could be tailored according to patients’ characteristics, functional ability, needs and interests.

Relevance to clinical practice.  Nurses and other healthcare professionals who promote the use of self-care practices to enhance quality of life for patients with advanced stage breast cancer may find this information useful to direct patients to appropriate resources.

Introduction

Metastatic breast cancer is a disease that has spread from the breast and axillary lymph nodes to distant parts of the body (American Cancer Society 2007). At this stage of breast cancer, stage IV, 90% of cases are recurrences and the disease is no longer considered curable. While the survival rate for stage IV breast cancer is considerably shorter than for earlier stages, women with advanced-stage breast cancer can live for many years after their diagnosis (Susan G Komen 2008). Therefore, the goal of treatment is to reduce common cancer-related symptoms such as pain and fatigue.

Women with breast cancer throughout all stages of disease, face a number of emotional and physical stressors related to the shock of their diagnosis and the effects of their treatment regimens. High rates of anxiety and depression are prevalent for women with early and late-stage disease (Kissane et al. 2004). Women with advanced breast cancer experience compounded emotional distress because of fears regarding a poor prognosis, the possibility that their disease may metastasise further, anxiety about future physical pain, and loss of independence (Aranda et al. 2005, Turner et al. 2005, Voogt et al. 2005). Furthermore, as women continue to receive treatments, manage cancer-related symptoms, and fulfil household, childcare and employment responsibilities (Desanto-Madeya et al. 2007), self-care is of high priority to women living with advanced breast cancer.

Self-care has been defined as the range of voluntary activities that an individual uses to maintain life, health and well-being (Orem 1995). Many studies of self-care in patients with different types and stages of cancer have examined self-initiated practices or professionally guided physical care, psycho-social coping skills training, and psycho-behavioural interventions. Psycho-social and physical self-care techniques were commonly used by women with stage I or stage II breast cancer (e.g. 95·6% reported establishing a supportive social network and 21·8% reported exercise at least three days a week) in a study by Seegers et al. 1998. In addition, physical activity three to five hours per week equivalent to walking at an average pace was associated with a lower relative risk of mortality in women with stage I, II and III breast cancer (Holmes et al. 2005). Furthermore, professionally guided self-care interventions for cancer patients such as exercise (Kolden et al. 2002), yoga (Culos-Reed et al. 2006), mindfulness-based meditation (Ott et al. 2006), spirituality (Cunningham 2005) and support groups (Rutledge & Raymon 2001) provide evidence to support that clinical self-care interventions enhance quality of life and physical health as well as decrease emotional distress in cancer patients.

Many studies of women living with metastatic breast cancer have focused on coping and emotional adjustment (Classen et al. 1996, Schnoll et al. 1998, Voogt et al. 2005). Little is known about how women actively manage both psychological and physical symptoms of stage IV breast cancer through self-care practices. A recent pilot study by Carson et al. (2007) of a yoga intervention exclusively for women living with metastatic breast cancer found that greater time spent in yoga practice was associated with lower levels of self-reported pain and fatigue and higher levels of invigoration, acceptance and relaxation the following day. Furthermore, in another study of women living with advanced breast cancer, religious expression and attendance at religious services was positively associated with immune function (Sephton et al. 2001).

With evidence to support that self-care practices may influence physiological as well as quality of life parameters in women throughout all stages of cancer, including stage IV breast cancer, effective self-care practices are of great importance and essential for comprehensive oncology care. Minimal research has been conducted to date on the self-care practices unique to women living with metastatic breast cancer. As an initial step to begin to understand this clinical issue, this exploratory study was undertaken. Its purpose was to describe self-care practices used by women with metastatic breast cancer and to examine relationships between self-care practices and patient characteristics.

Aim

To describe self-care practices used by women with metastatic breast cancer and to examine relationships between self-care practices and patient characteristics.

Method

This study was a secondary descriptive analysis of baseline data obtained from a longitudinal intervention trial, whereby participants were randomised to one of two home-based writing exercises done over four days (Bauer-Wu et al. 2003). Data were collected between April 2000–March 2003.

Sample

A convenience sample of 232 women were recruited from six clinical sites in the north-eastern part of the United States, including two National Cancer Institute-designated Comprehensive Cancer Centres, two academic tertiary care facilities, one community hospital, and one community oncology practice. English-speaking, stage IV breast cancer patients with a prognosis of greater than six months (determined by attending oncologist) were eligible to participate. Eligible and interested patients were identified by staff at the clinics (including physician and nurse referrals) and by self-referrals through brochures or flyers in the clinic waiting areas. Signed informed consent was obtained in person and participants were provided written surveys to complete at home and return by postal mail in pre-addressed, stamped envelopes. Given that this convenience sample primarily responded to study advertisements, the exact number of all of the potential eligible patients across all of the study sites is unknown. Of those for whom the study was discussed, 72% agreed to participate. Of the total 232 patients who agreed to participate, 59 withdrew from the study prior to data collection. Therefore, the attrition rate was 25%, resulting in a final sample size of 173. Reasons for attrition were the following: changed mind (52), too sick (2), lost to follow up (2), data lost (2) and deceased (1).

Ethical considerations

Appropriate approvals from the institutional review boards were obtained for the parent study and subsequent analyses. Signed informed consent was obtained in person and participants were provided written surveys to complete at home and return by postal mail in pre-addressed, stamped envelopes. All study information was coded; therefore, no identifying patient information was linked with study data.

Instruments

Self-care practices

An eight-item questionnaire was composed by the investigators to examine the use of different types of self-care practices: physical exercise, yoga/meditation, spiritual practices, journal writing, confiding in others when upset and participation in cancer support activities. Content validity was obtained by expert opinion from experienced oncology nurses, medical oncologists, and clinical social workers, along with a thorough review of the literature on the concept of self-care. Physical exercise (at least 20 minutes of vigorous activity) and meditation and/or yoga practice were based on five categories related to the number of times in an average week: (1) never, (2) once per week, (3) two to three times per week, (4) four to five times per week, and (5) every day. Physical exercise (at least 20 minutes of vigorous activity) and meditation and/or yoga practice were based on number of times in an average week. Spiritual practices, including prayer, as well as journal writing were assessed for current use. For confiding in others, participants responded to the question, ‘When you feel upset or troubled by something, with whom would you usually talk?,’ by checking one or more of six options: husband/significant other, other family member, close friend, religious or spiritual advisor, professional counsellor, or no one/prefer to handle by myself. General participation (past and/or present) in three different cancer support activities was assessed: support groups, Internet chat groups and other cancer support programmes (e.g. cancer retreats, in-person structured support and educational series for cancer patients).

Demographic and medical information

Demographic information (i.e. age, race, marital status, education, employment status and yearly family income) and medical information (i.e. functional status and date of first breast cancer diagnosis) were obtained by self-report using a form designed for this study. Other breast cancer information, such as date of metastatic diagnosis and treatment history, was obtained from medical record reviews. Functional ability was measured using self-report of the Eastern Cooperative Oncology Group (ECOG) Performance Status, which is widely used in research and clinical practice. Many oncology practices in the United States (US) and all clinical trials conducted throughout the extensive ECOG research group in the US use this established and validated measure (Oken et al. 1982; Comis 2008). The ECOG Performance Status scoring is 0–4 rating based on the following five categories: 0 = fully active, able to carry on all predisease performance without restriction; 1 = restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g. light house work, office work; 2 = ambulatory and capable of all self-care but unable to carry out any work activities. Up and about more than 50% of waking hours; 3 = capable of only limited self-care, confined to bed or chair more than 50% of waking hours; and 4 = completely disabled, cannot carry on any self-care, totally confined to bed or chair.

Participants

Of the 173 participants, the mean age was 53·7 years (SD 11·6). On average, the women were 47 years old when first diagnosed (SD 10·3) and 51 years old when the disease metastasised (SD 10·5). The sample was mostly white (97·7%), married (69·9%) and college educated (59·0%). Annual family income (in US dollars) ranged from earning <$15 000 (8·1%) to over $100 000 (20·8%); 9·2% earned between $15 000–$29 999, 23·7% earned between $30 000–59 999 and 30·1% earned between $60 000–$100 000 (8·1% missing data). Many women reported that they worked part-time (22·5%), full-time (23·1%) or worked at home (16·2%). Others were retired (13·3%), disabled (23·4%) or students (0·6%). Most women described their overall functional status as being able to carry out daily activities independently despite some symptoms (56·1%), while 32·9% described their activity level as normal without symptoms; the remaining women who responded (8·7%) indicated that they had symptoms and needed assistance with daily activities. All but nine participants (5·2%) received at least one kind of conventional cancer treatment in the last four weeks: chemotherapy (n = 95), hormonal therapy (n = 83), radiation therapy (n = 11) and surgery (n = 4) (Table 1).

Table 1.   Patient characteristics
VariableMean (SD) or n (%)N
Age on study53·7 (11·6)173
Age at diagnosis46·9 (10·3)171
Age at metastasis51·0 (10·5)169
Race 169
 White165 (97·6%) 
 Non-white4 (0·23%) 
Marital status 170
 Married121 (71·2%) 
 Single/Never married49 (28·8%) 
Education 169
 College or advanced degree102 (60·4%) 
 Some college/technical or trade school38 (22·5%) 
 Less than high school/high school graduate29 (17·2%) 
Annual family income (U.S.$) 159
 <15 00014 (8·8%) 
 15 000–29 99916 (10·1%) 
 30 000–59 99941 (25·8%) 
 60 000–100 00052 (32·7%) 
 >100 00036 (22·6%) 
Work status 170
 Full-time40 (23·5%) 
 Part-time38 (22·4%) 
 Work at home28 (16·5%) 
Retired23 (13·5%) 
 Student1 (0·6%) 
 Disabled40 (23·5%) 
Overall functional status 169
 Without symptoms, no assistance necessary for daily activity57 (33·7%) 
 Being able to carry out daily activities independently despite some symptoms97 (57·4%) 
 Had symptoms and needed assistance with daily activities14 (8·3%) 
 In bed more than half of the time and need a lot of help with personal care1 (0·6%) 
Treatment (in last four weeks) 170
 Surgery4 (2·4%) 
 Radiation10 (5·9%) 
 Chemotherapy93 (54·7%) 
 Hormonal therapy82 (48·2%) 
 No therapy9 (5·3%) 

Descriptive statistics

Descriptive analyses revealed the frequencies of self-care practices used by our sample of women with advanced stage breast cancer (Fig. 1). Over half of the sample (56·1%) participated in 20 minutes of physical exercise at least two to three times per week and 32·4% practiced yoga and/or meditation at least once weekly. Most participants (94·2%) confided in someone when feeling upset and generally confided in at least one person. These included: spouse/significant other (69%), close friend (58%), another family member (44%), counsellor (17%) and religious/spiritual advisor (8%). A few participants (5·8%) identified that they preferred not to talk to anyone when upset. The majority used spiritual practices (71·7%), including prayer, on a regular basis and 25·4% were currently writing in a journal. While 44·5% of the sample reported that they participated in a cancer support group, only 17·9% of the participants had participated in other cancer support programmes and 7·5% reported that they participated in an Internet chat group.

Figure 1.

 Self-care practices used by women with advanced-stage breast cancer.

Regression analysis

Multivariate logistical regression analyses were used to examine the effects of patients’ characteristics on self-care practices (outcomes). Eight outcomes (physical exercise, yoga/meditation, spiritual practices, journal writing, confiding in others when upset, cancer support groups, Internet chat groups for cancer patients and other cancer support programmes) were studied separately. All outcomes were binary (‘yes/no’), except yoga/meditation and physical exercise which were ordinal (categorical) outcomes. Proportional logistical regression analyses were used to analyse these latter two outcomes. Patients’ characteristics included age, race, marital status, education, income, employment status, functional ability, time since first diagnosis and time since metastatic disease. These variables were included simultaneously in the logistical regression analysis for each of the self-care practice outcomes. The multivariate logistical regression analyses revealed that participants who reported a higher level of physical functioning (lower score of the ECOG Performance Status) were more likely to participate in physical exercise (< 0·0001), while those who had lower level of physical functioning (higher score of ECOG Performance Status) were likely to write in a journal (p = 0·032). In addition, younger patients were likely to practice more yoga/meditation in an average week (p = 0·005) as well as participate in other cancer support activities (p = 0·008). These results are summarised in Table 2.

Table 2.   The odds ratios (OR) and their 95% confidence intervals (CI) of significant predictors for corresponding self-care practices*
Self-care practice (Outcome)PredictorOR95% CIp-value
  1. *Age, race, marital status, education, income, employment status, performance status, time since first diagnosis, and time since metastatic disease were included simultaneously in the logistic regression analysis for each self-care practice.

  2. Lower performance status score indicates higher physical functioning.

Yoga/meditationAge0·9350·892–0·9800·005
Other cancer support programsAge0·9230·870–0·9790·008
Journal writingPerformance status2·1761·071–4·4230·032
Physical exercisePerformance status0·2850·161–0·504<0·0001

Discussion

The results of this study suggest that women with advanced-stage breast cancer engage in a number of self-care practices, most commonly confiding in family and friends, participating in physical exercise, and using spiritual/religious practices. These results are in accordance with other studies of cancer patients of varying types and stages of disease that found verbal expression of feelings and physical exercise (Seegers et al. 1998) as well as prayer (Richardson et al. 2000) were commonly used. In this study, use of support groups was less common than other self-care activities mentioned above. A similar finding was reported in women with earlier stages of breast cancer by Seegers et al. 1998; 8·7% of participants were involved with a support group of people with the same illness, while 95·6% had established a good support network of immediate family and close friends.

Much emphasis has been on support-type activities for cancer patients; however, there may be other self-care activities that appeal to patients according to personal characteristics such as age and functional ability. In this study, women with breast cancer who experienced symptoms and greater disability were more likely to use journal writing, while those with fewer symptoms and more mobility tended to use physical exercise. This may be an indication that patients choose appropriate self-care practices based on their level of symptoms and physical ability and that self-care practices encompass more than formal social support activities. Furthermore, various self-care practices such as yoga/meditation and participation in cancer retreats appear to appeal to younger age groups of this population. Similarly, a study by Richardson et al. also found that demographic variables such as younger age and female gender predicted participation in mind/body therapies such as yoga and meditation (Richardson et al. 2000).

Limitations

This was a secondary analysis using baseline data of an intervention study. As such, the focus of the primary study was not on self-care per se and the measure used to assess self-care practices was not a validated instrument. Furthermore, the self-care strategies highlighted in the measure were preselected. It is possible that patients engage in other self-care strategies not included in the survey. Future research could use open-ended questions to examine the types of self-care strategies that patients with cancer use as well as perceived benefits and barriers to engaging in the patient identified self-care strategies. Nonetheless, information gained from this preliminary work provides valuable insight on a clinically relevant concept, self-care in advanced cancer patients, of which little has been described. A recent review of the literature yielded neither standardised instruments on self-care using a holistic perspective (most were limited to medical self-management) nor were any specific to the cancer population. In addition, current operational definitions of self-care are broad and vary. Therefore, detailed information regarding self-care and its conceptualisation was limited. It would be important for future research to operationally define self-care and further develop validated instruments.

In addition, it is uncertain whether the high proportion of women who reported that they wrote regularly in journals is truly a reflection of their functional ability associated with their disease or of a self-selection bias to participate in an expressive writing study. In addition, this was a cross-sectional study of women similar in race and education level; therefore results can only be tentative and provisional. Future studies should follow these women over time and use a more heterogeneous sample to better examine the scope of the phenomenon. Different self-care practices are likely used throughout the course of illness. Subsequent larger studies may reveal other important associations with socio-demographic variables (e.g. women of colour and the importance of religious/spiritual coping with illness). Future research could examine the link between self-care and coping styles as well as self-care as a mechanism to facilitate other coping behaviours.

Relevance to clinical practice

The results of this study provide an introduction to the concept of self-care with advanced cancer patients. Many clinicians – oncology nurses, psychologists and other healthcare professionals – who teach and counsel cancer patients can appreciate the importance of cancer patients’ self-care strategies to manage symptoms and stress. It is important to recognise that patients living with advanced cancer, specifically metastatic breast cancer, are utilising a range of holistic strategies to optimise their own physical and emotional well-being. The results of this study suggest that ‘one size does not fit all’; techniques to foster self-care need to be tailored to particular patient preferences and characteristics.

Conclusion

Self-care practices used to foster well-being are vital to women with metastatic breast cancer, especially since many of these women continue to live with the disease for years after the diagnosis. This study is an initial exploration of self-care practices in patients with advanced cancer, which has been minimally studied to date. Future research is needed to develop valid and reliable instruments to assess this important phenomenon. Despite the limitations of this preliminary work, important clinical considerations have been identified: clinical interventions that promote self-care could be tailored to meet the needs and interests of women with metastatic breast cancer based on specific patient characteristics and functional ability. The notion of patient self-care is a core value to clinicians who are committed to empowering patients and providing them with tools to live comfortable and fulfilling lives.

Acknowledgement

This study was conducted at the Dana-Farber Cancer Institute, where Ms Norris and Dr Bauer-Wu had a previous affiliation in The Phyllis F. Cantor Center.

Acknowledgement of Support

The parent study was funded by the Susan G. Komen Breast Cancer Foundation. Dr Bauer-Wu also receives support from the Georgia Cancer Coalition as a Distinguished Scholar.

Contributions

Study design: SBW; data analysis: QL & SBW; manuscript preparation: RLN, SBW & QL.

Ancillary