An evaluation of support groups for young women with early breast cancer

Introduction

Approximately 10,000 Australian women are diagnosed with breast cancer each year and in NSW in 1999, 3,463 women were newly diagnosed with breast cancer.1 Women under 50 years of age account for approximately 26 per cent of all new cases of breast cancer in Australia.2 Research indicates that young women have unique needs in terms of potential impact of treatment options on fertility and sexuality, the interruption of career, financial concerns and how to cope with young children.3

A number of studies have found that younger age is a risk factor for the development of psychosocial morbidity in women with breast cancer and is associated with increased morbidity across all phases of diagnosis and treatment.4 Younger women report higher levels of emotional distress, more unmet practical needs, more financial distress and greater disruption to their daily lives following treatment for breast cancer.4 Dunn and Steginga suggest a number of reasons why young women with breast cancer may experience increased psychosocial morbidity compared with older women.3 From a developmental perspective, younger women with breast cancer experience the stress of cancer concurrent to the multiple stressors associated with the early stage of the family life cycle.3 Also, younger women have been found to experience more disruption to self-image and sexuality.3 Subsequent infertility as a consequence of cancer treatments may also negatively affect the younger woman’s self-concept.3 In addition, younger women may experience premature menopause as a result of ovarian toxicity from chemotherapy, resulting in distressing physiological and psychological symptoms, which may include vaginal dryness, hot flushes, dyspareunia, mood swings and short term memory loss.3

Hughson and colleagues studied women for a period of two years following mastectomy and found that depression, anxiety and irritability were significantly more common in women younger than 50 years of age, compared with women over 50 years, and with a control group.5  In another study assessing the effects of mastectomy,6 younger women were identified as being at greater risk for developing poor mental health and as being more likely to experience a deterioration in well-being. A large study of women commencing chemotherapy or radiotherapy also found younger age to be associated with lower levels of emotional well-being.7 Bloom and Kessler found that being younger and having more children under the age of 21 years were predictive of women experiencing greater psychological morbidity after breast cancer treatment.8 The authors highlighted that younger breast cancer patients experience greater affective distress in the first year following diagnosis and at 5-year follow-up than do those who are older with comparable disease severity, apparently due to the greater fear of recurrence and the presence of competing care-giving demands.8

Dunn and Steginga also found that, consistent with previous research, younger women reported fears about not surviving to see their children grow up, about loss of fertility, or about not being able to have children because of concerns about future cancer recurrence.3 The women also described feeling that they were too young to get breast cancer and that they felt marginalised and isolated. In a qualitative study of very young women (aged less than 36 years) with early stage breast cancer, feelings of isolation and being different were identified as one of the predominant stressors.9 Other significant stressors experienced by these women were: coping with the untimeliness of the diagnosis; their feelings about the impact of the illness on their partner and on their relationship with their partner; sadness about lost opportunities for childbearing; uncertainty about their future; and anxiety about the impact of the illness on their children. In this study, several women spoke about their experience of attending breast cancer support groups and not feeling a sense of connection with the older women they encountered there. Instead of gaining a sense of normality and mutual support from participating, they often felt even more isolated.9

Thewes and colleagues conducted a preliminary qualitative study to assess the on-going psychosocial needs of breast cancer survivors and compare the needs of younger versus older breast cancer survivors.10 A wide variety of on-going psychosocial and information needs were reported by breast cancer survivors in the first two years after diagnosis, including support needs, psychological needs, practical needs, physical needs and information needs.10 Younger women reported more needs than did older women, and many of these directly related to being younger or pre-menopausal at the time of diagnosis.10 Younger women identified the impact their diagnosis and treatment had on their lifestyle and career as a concern and pre-menopausal women spoke about a number of gynaecological late-effects of treatment.10 A number also reported a lasting impact on their intimate relationships and sexuality.10 The impact of treatment on fertility, and information about choices for contraception, were major concerns identified by younger women.10 All of the women who had sought information about fertility felt that the information that they received was conflicting or inadequate.10 The youngest sub-group in this study (<36 years) spoke about isolation or a sense of being alone as a younger woman treated for breast cancer.10 There was a perception that support groups did not cater to the needs of younger women, or that they were for terminally ill people.10 Whereas older women spoke about the educational benefits of attending support groups as well as emotional support, younger women emphasised the social and emotional aspects of attending support groups, and the younger women reported more need for emotional support from professional counsellors.10 The findings of this study highlighted a strong need for young women to access other breast cancer patients of their own age.10

A number of authors have argued that the provision of appropriate support services that cater to the specific needs of young women is important.3,11 In Dunn and Steginga’s study, the supportive intervention most commonly endorsed by young women was peer support, which was seen as providing them with an opportunity to meet and share experiences with other young women with breast cancer.3 The authors (p.144) state that ‘group interventions that provide women with breast cancer with the opportunity to compare themselves with others in a similar situation can assist by normalising women’s feelings of distress, and assisting women to develop resilience in the face of adversity.  For this particular target group (i.e. younger women), peer support programs, professionally supported and supervised, are a priority’.

We recently carried out a systematic literature search using MEDLINE, PsychINFO, and EMBASE of studies, published in a peer-reviewed journal in the English language, which described a group therapy program for women with breast cancer, provided qualitative outcome data and had a prospective design (with a pre- and at least one post-counselling assessment) or a randomised controlled trial design. This systematic search of the literature demonstrates a large knowledge base on the efficacy of support groups for women with breast cancer.12-41 This systematic review supports earlier reviews that have found that group psychosocial interventions provide psychological benefits for women with breast cancer.42,43 Most studies assessing the efficacy of psycho-educational groups have demonstrated improvements in mood disturbance for groups of women with early breast cancer35 or mixed stages of breast cancer.22 Only two of the psycho-educational studies reviewed showed limited or no reduction in mood disorder, but both found positive effects as assessed by a measure of benefit finding.12,15 The positive effects of psycho-educational interventions have been demonstrated over short-term17,22,28,35 and longer-term periods.22,28,35

Although the unique psychosocial impact of breast cancer on younger women has been identified by a number of researchers,3-7,9,10,44-49 and a number of authors have suggested that the needs of  this group of women would be best addressed by the provision of groups specifically designed for younger women3,10,49,50 very little work has been conducted to date with this group of young women.

The systematic literature search found no studies evaluating the outcomes of psychosocial group therapy for groups of younger women, however two studies describing the content of groups for young women were identified. Smeardon describes a British group program for women under 55 years of age with breast cancer.51 Psycho-educational groups, aimed to reduce psychological morbidity in young women with breast cancer, were conducted for 2 hours weekly over a 6-week period. Although formal evaluation was not reported, informal evaluation indicated that young women identified the opportunity to network with women in a similar situation as one of the most important aspects of the group and that they found the educational input and the overall support from the group to be beneficial.51  A large project in California has commenced to develop and evaluate a psycho-educational group intervention for young women newly diagnosed with breast cancer.52  This includes a 10-week psycho-educational group program for women 50 years and younger, and initial feedback has found that 87 per cent of participants rate the intervention as helpful.52 The majority of women in the study rated ‘being able to talk/relate to the other women’ and ‘emotional support’ as most helpful, and also found the provision of education and information to be helpful.52

Given the dearth of empirical data in this area, this study is assessing the efficacy of a support group for younger women diagnosed with early stage breast cancer. The study tests the following hypotheses: (i) there will be significant improvements in psychological outcomes relative to baseline; (ii) women with lower social support, lower self-esteem and higher psychological distress at baseline will experience greater improvements in each of these outcomes; (iii) younger women will experience greater improvements in psychological outcomes as will women without a partner. Outcomes will also be dependent upon whether or not women have children. 

Methods

Participants

Participation in the support groups was open to young women receiving treatment for early stage breast cancer at two treatment centres in Sydney. Women were referred to the group support facilitator by health care providers at the two treatment centres (the NSW Women’s Breast Centre, a joint service of the Royal Hospital for Women and the Prince of Wales Hospital, and the Mater Hospital). Ethics approval was obtained from the two institutional ethics committees. Following referral women were telephoned by the group facilitator for a pre-group interview.  All young women were eligible to participate, using a functional definition of young as developed by Dunn and Steginga that is not contingent upon chronological age, thereby avoiding the pitfalls of an arbitrary cut-off.3  Three indicators were utilised for defining young as applied to women with breast cancer: (i) the woman is of childbearing age; (ii) the woman has young children, that is, children not yet at secondary school; or (iii) the woman has not yet reached menopause.3

A combination of CBT and mutual aid formed the theoretical framework underpinning the group program.53 The groups were facilitated by a Clinical Psychologist with training in group facilitation (BT) and co-facilitated by a specialist breast care nurse, social worker or pastoral care worker. The group support program consisted of ten fortnightly sessions, offered on weekday evenings. The number of group participants was limited to twelve. The first session consisted of an introduction to the program and ice- breaker activities. Baseline questionnaires were collected prior to the first therapeutic session. The nine therapeutic sessions covered the following topics: (i) post-treatment issues and recovery from breast cancer; (ii) feeling good about yourself; (iii) coping with fear, sadness, stress and worry; (iv) lymphoedema; (v) fertility and early onset menopausal symptoms; (vi) dealing with the impact of breast cancer on relationships and communication; (vii) complementary therapies in breast cancer; (viii) body image, sexuality, and the impact of breast cancer on intimate relationships; and a final session (ix) ‘how far have I come’ and ‘where to from here’. Post-group questionnaires were completed after the last session. Reminder calls were made as required to obtain post-group questionnaires. 

Demographic characteristics

At baseline, age, educational level, marital status, number of children and disease related variables were assessed. 

Measures

Profile of Mood States (POMS) - Brief Form

The Profile of Mood States has been widely used in intervention studies with breast cancer patients for measuring mood outcome.54 The POMS Brief Form is a 37-item questionnaire,55 which contains six mood-related subscales: anxiety, depression, anger, vigour, fatigue and confusion. A Total Mood Disturbance Score is calculated by adding together scores on the other five subscales and subtracting vigour. On all subscales except vigour, a higher score indicates poorer outcome. High internal consistency and test-retest reliability has been reported for each of the six subscales.54

The Coopersmith Self-esteem Inventory - Adult Form

This is a 25-item unidimensional self-assessment instrument measuring self-esteem.56  It has been widely used in a range of research trials and in intervention studies with breast cancer patients18 and has adequate psychometric properties.56  Scores range from 0 to 100 and higher scores denote greater self-esteem.

The Duke UNC Functional Social Support Questionnaire (DUFSS)

The DUFSS is an 8-item, 2-scale questionnaire that assesses four content areas: quality of support, confidant support, affective support and instrumental support. Factor analysis demonstrates that it assesses two dimensions of social support: affective support (three items) and confidant support (five items).57 Reliability and validity data have been reported and are satisfactory.57  Scores range from 8 to 40 and higher scores denote greater social support.

Satisfaction with group intervention

As well as the psychometric measures, post-group questionnaires included 18 purposively designed items assessing satisfaction with aspects of the group program. Response options ranged from ‘strongly agree’ to ‘strongly disagree’. Scores ranging from 1 to 5 were allocated with higher scores denoting greater satisfaction. A mean satisfaction score was calculated by adding all individual scores and dividing by the total number of scores. 

Statistical analyses

A significance level of p < 0.05 was used for statistical tests.  Due to the limited sample size, differences in outcome between women seen at different treatment centres were not explored. For normally distributed related continuous variables, paired t-tests were conducted. For non-normally distributed related continuous variables, Wilcoxon matched-pairs signed rank tests were performed to test whether there were any changes in patient outcomes from baseline to follow up.  To test whether women with lower social support, lower self-esteem and higher psychological distress at baseline would experience greater improvements in each of these outcomes, linear regressions were used to regress the follow up values on the baseline values for each set of outcomes.   Each regression was examined to ascertain whether the confidence intervals around the regression coefficient did not include 1.0 and that the coefficient was significantly smaller than 1.0.  To test whether marital status and whether or not a woman had children predicted patient outcomes, Mann-Whitney U tests were conducted for non-normally distributed dependent variables and independent t-tests were conducted for normally distributed variables, using change scores.

Results

Characteristics of the sample

Of the 53 women who participated in the support groups, none declined participation in the questionnaire assessment. Five women completed only the pre-group assessment and four only the post-group questionnaire, leaving a total of 44 women who completed both questionnaires and were included in the analysis (participation rate for both questionnaires was 83 per cent). Twenty (45 per cent) of the participants had attended groups at the NSW Women’s Breast Centre, and 24 (55 per cent) at the Mater Hospital. The mean age of the sample was 40 years, ranging from 23 to 50. Eighty-six percent had education beyond high school, compared to 37 per cent of women in the general Australian population,58 indicating above-average educational levels. These high educational levels could at least in part be a reflection of the catchment area of the two treatment centres where the groups were conducted.

Women were diagnosed between one and 12 months prior to commencement of the group (mean = 4 months). Table 1 summarises the sociodemographic and disease related variables.