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The Unmet Information and Support Needs of Women With a Family History of Breast Cancer: A Descriptive Survey Belinda Thewes,1,4 Bettina Meiser,2 Monica Tucker,3 and Kathy Tucker3
This study aims to survey the unmet support needs of women at increased risk of developing breast cancer. In total, 173 unaffected women with a family history of breast cancer completed a 28-item purposely-designed mailed survey. The majority of participants did not report a high level of unmet need for support. Receiving further information about cancer genetics was the most commonly reported area of unmet need. Only about 20% of participants reported a moderate to high degree of interest in attending a hypothetical support group. However, a higher degree of interest was expressed in internet-based information and supportive interventions. Amongst those interested in attending a support group, discussion, and receiving further information were the most preferred activities. Higher levels of unmet support needs were significantly associated with interest in attending groups. No demographic variables were found to predict interest in attending a support group. Implications for those considering establishing support groups are discussed. KEY WORDS: familial breast cancer; support needs; support groups; unmet needs.
1 Department
of Medical Oncology, Prince of Wales Hospital, Randwick, New South Wales, Sydney, Australia. 2 Department of Psychological Medicine, Royal North Shore Hospital, St Leonards, New South Wales, Sydney, Australia. 3 Hereditary Cancer Clinic, Prince of Wales Hospital, Randwick, New South Wales, Sydney, Australia. 4 Correspondence should be directed to Belinda Thewes, Clinical Research Psychologist, Department of Medical Oncology, Prince of Wales Hospital, Randwick, New South Wales 2031, Sydney, Australia; e-mail: [email protected]. 61 C 2003 National Society of Genetic Counselors, Inc. 1059-7700/03/0200-0061/1 °
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INTRODUCTION Several studies on the psychological characteristics of women at increased risk for developing breast cancer, one of which included a matched control group (Cull et al., 1999; Hopwood et al., 1998; Valdimarsdottir et al., 1995), have reported psychological distress levels significantly higher than that of normative samples or a control group. In addition to having a high lifetime risk of developing breast cancer, many women also face chronic grief due to multiple premature bereavements (Biondi, 1996), and high levels of guilt due to the possibility of having passed a predisposition for breast cancer onto their children (Kash, 1996). Over the past decade numerous studies have assessed the impact of individualized genetic counseling on risk perceptions and distress levels. A recent meta-analysis synthesized much of this literature and concluded that genetic counseling is effective in reducing generalized anxiety and increasing the accuracy of perceived risk (Meiser and Halliday, 2002). In recent years there has been growing interest in the development of psychoeducational and psychological interventions delivered in a group format that are aimed at improving risk comprehension and reducing distress amongst women at high risk of developing breast cancer. Kash et al. published the first outcome data on a group intervention for women at increased risk of developing breast cancer (Kash et al., 1995). In a small randomized controlled trial (n = 40), these authors compared knowledge of breast cancer and perceived barriers to screening of women who participated in a 6week structured group intervention program which involved psychoeducation, cognitive restructuring, problem-solving, and emotional support components with women participating in standard individualized genetic counseling. Subjects in the study were women at high risk of developing breast cancer who were attending a surveillance program. Compared to controls, women in the intervention group were significantly more likely to show an increase in knowledge, and a decrease in perceived barriers to screening. Women in the group intervention also experienced a significant improvement in adherence to screening and these improvements were maintained 3 years after participation. Wellisch et al. published preliminary data on the outcome of a group intervention for women with a family history breast cancer that included psychoeducation, skills training, and emotional support components (Wellisch et al., 1999). Participants in the study were women with a family history of breast cancer who were enrolled in a surveillance program. Sixty-six percent of women approached consented to participate in the study. No control condition was included. The intervention was delivered in six consecutive weekly meetings and included an educational session on topics relevant to being at risk for breast cancer. Compared to baseline, preliminary results showed a significant decrease in depression scores and state anxiety scores at the end of the group.
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Karp et al. reported on the utility of running a six-session psychoeducational and support group for women considering prophylactic mastectomy (Karp et al., 1999). The only structured activities were completion of a pregroup perceived risk assessment in the first session and a presentation given by a woman who had undergone prophylactic mastectomy in the fifth session. Participants in the group were women with a strong family history of breast cancer who were considering prophylactic mastectomy and had attended a familial cancer clinic. Four out of 19 women invited to participate in the group agreed to attend. A follow-up phone call by a group leader 1 year after completion of the group revealed that all women thought the group had helped them to gain perspectives that they had not previously considered and it had helped them to realize the seriousness and complexity of prophylactic mastectomy. All said they would attend a similar group in the future. Most recently Esplen et al. conducted a pilot study to examine the impact of a group intervention which consisted of supportive–expressive and psychoeducational components on accuracy of perceived risk, psychological distress, knowledge of breast cancer risk and genetics, and screening practices (Esplen et al., 2000). No control condition was included. The intervention consisted of eight weekly sessions (intensive phase) followed by four monthly booster sessions over a 6-month period. Women in the study were 31 women with a family history of breast cancer and 10 women with both a personal history and a family history of breast cancer (n = 41). All women were invited to participate in the study by clinic staff during a familial cancer clinic visit. Those who were unable to be approached during their visit were subsequently telephoned by clinic staff and invited into the study. Compared to baseline, women who participated in the group intervention were significantly more likely to improve their risk comprehension and to show a significant reduction in cancer-related distress, depression, anxiety, and unresolved grief at 6-month follow-up. While there have been some favorable results from the pilot studies of group interventions for high-risk women conducted to date, there are a number of methodological limitations to these studies. Firstly, in most studies women were invited by clinic staff to participate in a research project rather than attend a clinical service. Rate of uptake of the group service ranged from 21 to 66%, but was not reported for one out of the four studies (Kash et al., 1995). Secondly, to date outcome data on group interventions with high-risk women have included only North American samples. It is not known how these data generalize to an Australian population. Anecdotal evidence from our own clinic suggests that the interest in group interventions amongst familial cancer clinic patients may be more limited than the North American data suggest. It is therefore important to assess the perceived support needs of Australian familial cancer clinic patients in order to ensure that services are developed in accordance with patient needs and preferences, and to ensure that resources are utilized in the most efficient and cost-effective manner.
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While data on evaluations of psychoeducational and psychosocial interventions have been accumulating, few studies have reported on the unmet support needs of women at high risk of developing breast cancer. One North American study which examined interest in a support group among men and women tested for BRCA1 gene mutations, found that 28% of participants said that they would be interested in participating in a hypothetical support group (Hamann et al., 2000). Participants in this study who were gene carriers were no more likely to be interested in attending a support group than noncarriers. Women without a personal history of breast cancer were more interested in attending a familial cancer support group than those with a personal history. In contrast to the findings of another study involving oncology support groups (Bauman et al., 1992), which suggest that support group participants are younger and better educated, this study found that amongst men educational level was inversely correlated with interest and positively associated with age and family income. No demographic variables were found to predict interest in support groups amongst women. Although this study found that about a quarter of those who receive a test result may be interested in a support group, questions about the level of interest in support groups amongst those who decline testing or are ineligible for testing remain unanswered. Increasing attention has recently been given to the assessment of unmet needs amongst cancer patients. Needs assessment is a measurement technique that provides an index of patients’ perceptions of the issues with which they require help. Needs assessment yields a direct index of what the patient perceives they need help with, and indirectly measures perceived efficacy of a health service by its users (Foot and Sanson-Fisher, 1995). Needs assessment differs from related assessment constructs such as “patient satisfaction” surveys in that it directly links services with patient desires and is more solution-focused (Bonevski et al., 2000; Foot and Sanson-Fisher, 1995). Given that so few data are currently available on the perceived support needs of women at risk of hereditary breast cancer from the patient’s perspective, this methodology appeared most suited to addressing this area of enquiry. One recent British study has adopted this methodology to study the unmet information and support needs of a small sample (n = 39) of women with a primary relative with a diagnosis of breast cancer. This study found that needs for information were the predominant area of unmet need and the need to attend a support group was seen as not important or slightly important by 60% of the sample (Chalmers et al., 2001). The primary aim of the present study was to survey the unmet support needs of women at high risk of developing breast cancer. Secondly, we were interested in identifying the degree of interest amongst women with a family history of breast cancer to participate in support groups and other interventions, and to examine patient characteristics which influence an interest in support groups. Thirdly, we aimed to determine the preferred content and format of supportive group interventions which women with a family history of breast cancer perceive to be most relevant to their needs.
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METHODS Participants and Procedure The findings reported here are based on a sample of 173 unaffected women with a family history of breast cancer. Two recruitment strategies were employed. Firstly, 108 women were assessed as part of a more comprehensive study reported elsewhere involving women at increased risk of developing breast cancer who approached one of 14 metropolitan familial cancer clinics (and six rural clinics) for advice about their breast cancer (Meiser et al., 2000). These familial cancer clinics provide a comprehensive service according to National guidelines, which includes risk assessment, genetic testing, and advice regarding early detection and prophylactic strategies (National Health and Medical Research Council, 1999). Compared to generalist services, these familial cancer clinics provide specialist counseling through clinical geneticists, oncologist with specialist training in hereditary cancer and/or genetic counselors. An additional 65 women were recruited through one major metropolitan familial cancer clinic, identified through a database-generated list of consecutive women with a family history of breast cancer who attended the familial cancer clinic. Women recruited through these two methods were at “moderately increased risk” (lifetime risk of 1 in 4 to 1 in 8) or “high risk” (lifetime risk of 1 in 2 to 1 in 4) on the basis of their family history of breast cancer suggesting that their risk was increased relative to women at the Australian population risk (lifetime risk of 1 in 13) (National Breast Cancer Centre, 2000). This method of risk assessment was referred to because of the current uncertainty associated with risks imparted by breast cancer gene mutations and the inappropriateness of the Claus and Gail models to high-risk women (Claus et al., 1994; Gail et al., 1989). Because women attending familial cancer clinics have been found to have above-average educational levels and may therefore not be representative of the wider population of women with a family history of breast cancer (Cull et al., 1999; Meiser et al., 2000), we included 20 women in our sample who had not attended the clinic for counseling and instead received telephone counseling only. The risk status of the latter group of women is unknown, as they never attended the familial cancer clinic for risk assessment. Women were considered ineligible for study participation if they had a prior diagnosis of ovarian or breast cancer; were unable to give informed consent; or had limited literacy in English, since data were collected using self-report questionnaires. All participants were mailed the support needs survey together with an introductory letter and reply paid envelope. Measures The unmet needs questionnaire used in our study was developed by an expert panel consisting of a clinical geneticist, two genetic counselors and two research
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psychologists. It was also based on clinical experience with women with a family history of breast cancer and issues identified in the literature. A 28-item survey was specifically constructed for the present studies. The survey included Demographic Variables: Items included age, educational level, marital status, and parity. Unmet Support Needs: Nine items were developed on the basis of support needs identified in the literature and in consultation with the expert panel. Participants were asked to indicate their level of need for help in the last month with each issue using a 5-point Likert scale (where 1 = no need—not applicable; 2 = no need—need has already been satisfied; 3 = low need for help; 4 = moderate need for help; 5 = high need for help). Issues included obtaining information about risk, understanding information given, dealing with uncertainty, dealing with fears about developing breast cancer, dealing with the impact of breast cancer on the family, dealing with sadness, dealing with the loss of family members due to breast cancer, reassurance that the way you feel is normal, and talking with other women who have a family history of breast cancer. The format, response categories, and some items were adapted from two existing unmet needs questionnaires (Cancer Patient Needs Questionnaire and Supportive Care Needs Survey) developed to assess the unmet support needs of patients going through treatment for cancer (Bonevski et al., 2000; Foot and Sanson-Fisher, 1995) which have demonstrated acceptability, validity, and reliability. Our adaptation of these scales was found to have high internal consistency in the current sample (Cronbach’s α = 0.92). One additional open-ended item was added for participants to suggest other areas of unmet support needs which may not have been covered by the other need items. Service Needs: The survey included five items to gauge the level of interest amongst women at high risk in utilizing a variety of support services including attending a familial cancer clinic, informal telephone contact with another high-risk woman, an internet “chat room” for high-risk women, talking to a psychologist or social worker about matters related to being at risk for breast cancer, and meeting with a group of women who have a family history of breast cancer. Participants were asked to respond on a 4-point scale (ranging from “Not interested,” “Mildly interested,” “Moderately interested,” to “Very interested”). All participants were additionally asked to complete one open-ended item asking them for their additional comments or suggestions regarding support services for women with a family history of breast cancer. Group Content and Format: All women who indicated some level of interest in meeting with other women (i.e. those who were “mildly interested” to “very interested”) were asked to complete an additional eight items to determine their preferences for group content and format, location, and timing of meetings. Participants were asked to endorse more than one activity, if applicable.
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DATA ANALYSIS Data analysis was carried out in three stages. Firstly, descriptive statistics were used to characterize the sample in terms of sociodemographic variables, support needs, and preferences for support services delivery. Secondly, to assess associations between sociodemographic variables and support needs, scores on the Unmet Support Needs Scale were recoded into a continuous variable so that “no need” or “need satisifed” = 0, “low need” = 1; moderate need = 2; and high need = 3. An overall unmet support needs score was calculated for each respondent by summing the recoded scores of each of the nine items of the Unmet Support Needs Scale. To assess bivariate associations with support needs, Mann–Whitney U tests were performed for educational level, marital status, and having children, because the support needs variable did not satisfy normality assumptions and Spearman’s rank correlation, rather than Pearson’s correlations, was calculated for age. Thirdly, to assess patient characteristics that influence interest in support groups, a dichotomous variable was created of interest in attending a group. Participants were divided into those reporting not being interested in attending a support versus those who indicated being mildly, moderately or very interested. To assess bivariate associations with interest in support groups, chi-square analyses were carried out with educational (postschool qualifications vs. no postschool qualifications) level, marital status, and having children. A two-sample t-test was performed for the normally distributed variable of age, and a Mann–Whitney U -test to test for an association between the total unmet support needs scores and interest in support groups.
RESULTS Of the 306 women who met the eligibility criteria, 173 returned the questionnaire (response rate of 56%). The majority of participants (88%) had already attended a consultation at a familial cancer clinic at the time of completing the survey. Demographic data of the sample are summarized in Table I. Participants were found to be well educated with approximately three quarters (77.1%) of the sample with postschool qualifications (e.g. diploma, university degree), compared to 37% of women in the general Australian population (Australian Bureau of Statistics, 1997). Forty-nine women (28%) reported having received a predictive genetic testing result, although we did not ask women to report on their mutation status result. Unmet Support Needs The most prevalent (20.5%) moderate to high unmet support need for women in the present sample was the need for further information about their level of risk for developing breast cancer (Table II). Other needs identified by participants in an open-ended item included the need for more follow-up after a familial cancer clinic
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Thewes, Meiser, Tucker, and Tucker Table I. Demographics of Participants Variable Agea 50 years Marital status Married (or de facto) Never married Separated, divorced, widowed Education level No postschool qualifications Certificate and diploma level Bachelor and postgraduate level Employment status Home-maker Self-employed Part-time Full-time Retired Other (unemployed, student) Children Yes No a Mean
N
%
41 85 43
24.2 50.3 25.5
131 15 24
77.1 8.8 14.1
38 61 67
22.9 36.7 40.4
36 13 44 56 15 8
20.9 7.6 25.6 32.6 8.7 4.6
127 41
75.6 24.4
= 43.09 years, range 21–74 years, SD = 11.14.
consultation, quicker testing results, financial support for rural patients to attend a clinic, access to bereavement counseling, information about research developments, information about talking to children about cancer risk, and information about suitable contraception for women with a family history of breast cancer. Service Needs Table III provides a summary of additional service needs. Thirty-seven percent of the sample said that they would be moderately to very interested in attending a familial cancer clinic. About a third (28.4%) reported interest in visiting an internet chat room specific to women with a family history of breast cancer. Approximately one fifth (20.8%) of the sample said that they would be “moderately” to “very interested” in attending a meeting with a group of women with a family history of breast cancer. A further 54 women (31.2%) reported “mild” levels of interest in attending such a group meeting. Preferred Content, Format, Location, Timing, and Frequency of Group Meetings Table IV shows the reported preferred activities amongst the 90 women who expressed any degree of interest in attending groups (i.e. those who were “mildly interested” to “very interested”). The most endorsed group activity was
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Table II. Proportion of Women Reporting Moderate to High Unmet Support Needs Number of women reporting Percentage of sample reporting moderate to high levels moderate to high levels of unmet need of unmet need
Item Obtaining further information about your level of risk for breast cancer Dealing with the impact that breast cancer has had on your family Dealing with feelings of sadness Dealing with uncertainty about the future Dealing with fears about developing breast cancer Reassurance that the way you feel about your risk is normal Dealing with the loss of family members who had breast cancer Understanding the information you have been given about your level of risk Talking with other women who have a family history of breast cancer
34
20.5
29
17.4
25 24
15.2 14.4
23
14.0
21
12.6
20
12.0
17
10.2
15
9.1
Table III. Proportion of Sample Expressing Moderate to High Degree of Interest in Utilizing Services
Service Attending a familial cancer clinic to discuss issues related to your risk of developing hereditary breast ancer Visiting an internet “chat room” specifically designed for women with a family history of breast cancer Talking to a professional counselor about matters related to your risk for cancer Meeting with a group of women who have a family history of breast cancer Having informal phone contact with another woman of similar age to you who has a family history of breast cancer aA
Number of women moderately Proportion of sample moderately to very interested in to very interested in utilizing service utilizing service 64
37.0
49
28.4
42
24.3
36a
20.8
29
16.8
further 54 women reported they were “mildly interested” in attending a group.
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Table IV. Preferred Activities of Support Group Amongst Participants Who Expressed an Interest in Attending a Group (n = 90) Activity Receiving further information about cancer genetics Discussion of experiences and feelings related to having a family history of cancer Learning stress management strategies Learning strategies to manage worry about developing cancer Other (e.g. dietary and lifestyle information, research developments, talking to children about risk)
Number of participants endorsing activity
Proportion of participant endorsing activity (%)
67
74.4
60
66.6
55
61.1
53
58.8
6
6.6
the provision of further information about breast cancer genetics, which was endorsed by about three quarters of the sample (74.4%). With respect to format of delivery, 75.3% of participants preferred a face-to-face meeting over a teleconference meeting (24.7%). The familial cancer clinic was preferred by 44.7% of women, compared to 39.5% who would prefer a nonhospital location. Evening meetings were favored over daytime meetings (59.5% vs. 40.5%), and weekends were marginally preferred over weekdays (51.9% vs. 48.1%). With respect to frequency of meetings, infrequent meetings were preferred. Bimonthly meetings were preferred by 41.2% of the sample over weekly, monthly, and three monthly meetings (which were preferred by 1.2%, 20.0%, and 18.5% of the sample respectively).
Factors Associated With Unmet Support Needs and Interest in Attending Groups Table V shows the results of bivariate analyses of predictors of unmet needs. Having a postschool education was significantly associated with higher levels of unmet needs (Z = −2.128, p = 0.03). No other demographic variables were associated with level of unmet support needs. Table VI shows the results of bivariate analyses of predictors of interest in a support group. Those who were interested in attending groups reported significantly higher overall levels of unmet support needs compared to those not interested in attending (Z = −4.20, p < 0.001). No sociodemographic variables were found to be associated with interested in attending a group in the present sample.
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Table V. Bivariate Predictors of Total Unmet Needs Variable
Mean of total unmet needs
Age Education No postschool education Postschool education Marital status Never married/widowed/divorced/separated Married/de facto Children Yes No
Z
r
p
0.00
0.99
2.92 4.17
−2.128
0.03
4.86 3.87
−1.04
0.30
4.01 4.27
−0.73
0.46
DISCUSSION Interest in Receiving Further Information The results of the present study suggest a strong level of interest in receiving further information about breast cancer genetics amongst women at high risk of developing hereditary cancer, and support the conclusions of another recent survey of unmet needs amongst women with a primary relative with breast cancer (Chalmers et al., 2001). The high level of unmet needs for information expressed by participants in the present study may have been influenced by poor recall of information provided during consultations. Studies have reported that counselees
Table VI. Bivariate Predictors of Interest in Attending a Group Variable
Mean (SD)
t/Z
χ2
Age Interested 42.28 (11.77) 0.97 Not interested 43.96 (10.52) Total unmet need Interested 6.16 −4.20 Not interested 1.71 Percentage interested in attending group (%) Education No postschool Postschool Martial status Singlea Married/de facto Children Yes No a Includes:
p 0.33
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C 2003) Journal of Genetic Counseling, Vol. 12, No. 1, February 2003 (°
The Unmet Information and Support Needs of Women With a Family History of Breast Cancer: A Descriptive Survey Belinda Thewes,1,4 Bettina Meiser,2 Monica Tucker,3 and Kathy Tucker3
This study aims to survey the unmet support needs of women at increased risk of developing breast cancer. In total, 173 unaffected women with a family history of breast cancer completed a 28-item purposely-designed mailed survey. The majority of participants did not report a high level of unmet need for support. Receiving further information about cancer genetics was the most commonly reported area of unmet need. Only about 20% of participants reported a moderate to high degree of interest in attending a hypothetical support group. However, a higher degree of interest was expressed in internet-based information and supportive interventions. Amongst those interested in attending a support group, discussion, and receiving further information were the most preferred activities. Higher levels of unmet support needs were significantly associated with interest in attending groups. No demographic variables were found to predict interest in attending a support group. Implications for those considering establishing support groups are discussed. KEY WORDS: familial breast cancer; support needs; support groups; unmet needs.
1 Department
of Medical Oncology, Prince of Wales Hospital, Randwick, New South Wales, Sydney, Australia. 2 Department of Psychological Medicine, Royal North Shore Hospital, St Leonards, New South Wales, Sydney, Australia. 3 Hereditary Cancer Clinic, Prince of Wales Hospital, Randwick, New South Wales, Sydney, Australia. 4 Correspondence should be directed to Belinda Thewes, Clinical Research Psychologist, Department of Medical Oncology, Prince of Wales Hospital, Randwick, New South Wales 2031, Sydney, Australia; e-mail: [email protected]. 61 C 2003 National Society of Genetic Counselors, Inc. 1059-7700/03/0200-0061/1 °
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INTRODUCTION Several studies on the psychological characteristics of women at increased risk for developing breast cancer, one of which included a matched control group (Cull et al., 1999; Hopwood et al., 1998; Valdimarsdottir et al., 1995), have reported psychological distress levels significantly higher than that of normative samples or a control group. In addition to having a high lifetime risk of developing breast cancer, many women also face chronic grief due to multiple premature bereavements (Biondi, 1996), and high levels of guilt due to the possibility of having passed a predisposition for breast cancer onto their children (Kash, 1996). Over the past decade numerous studies have assessed the impact of individualized genetic counseling on risk perceptions and distress levels. A recent meta-analysis synthesized much of this literature and concluded that genetic counseling is effective in reducing generalized anxiety and increasing the accuracy of perceived risk (Meiser and Halliday, 2002). In recent years there has been growing interest in the development of psychoeducational and psychological interventions delivered in a group format that are aimed at improving risk comprehension and reducing distress amongst women at high risk of developing breast cancer. Kash et al. published the first outcome data on a group intervention for women at increased risk of developing breast cancer (Kash et al., 1995). In a small randomized controlled trial (n = 40), these authors compared knowledge of breast cancer and perceived barriers to screening of women who participated in a 6week structured group intervention program which involved psychoeducation, cognitive restructuring, problem-solving, and emotional support components with women participating in standard individualized genetic counseling. Subjects in the study were women at high risk of developing breast cancer who were attending a surveillance program. Compared to controls, women in the intervention group were significantly more likely to show an increase in knowledge, and a decrease in perceived barriers to screening. Women in the group intervention also experienced a significant improvement in adherence to screening and these improvements were maintained 3 years after participation. Wellisch et al. published preliminary data on the outcome of a group intervention for women with a family history breast cancer that included psychoeducation, skills training, and emotional support components (Wellisch et al., 1999). Participants in the study were women with a family history of breast cancer who were enrolled in a surveillance program. Sixty-six percent of women approached consented to participate in the study. No control condition was included. The intervention was delivered in six consecutive weekly meetings and included an educational session on topics relevant to being at risk for breast cancer. Compared to baseline, preliminary results showed a significant decrease in depression scores and state anxiety scores at the end of the group.
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Karp et al. reported on the utility of running a six-session psychoeducational and support group for women considering prophylactic mastectomy (Karp et al., 1999). The only structured activities were completion of a pregroup perceived risk assessment in the first session and a presentation given by a woman who had undergone prophylactic mastectomy in the fifth session. Participants in the group were women with a strong family history of breast cancer who were considering prophylactic mastectomy and had attended a familial cancer clinic. Four out of 19 women invited to participate in the group agreed to attend. A follow-up phone call by a group leader 1 year after completion of the group revealed that all women thought the group had helped them to gain perspectives that they had not previously considered and it had helped them to realize the seriousness and complexity of prophylactic mastectomy. All said they would attend a similar group in the future. Most recently Esplen et al. conducted a pilot study to examine the impact of a group intervention which consisted of supportive–expressive and psychoeducational components on accuracy of perceived risk, psychological distress, knowledge of breast cancer risk and genetics, and screening practices (Esplen et al., 2000). No control condition was included. The intervention consisted of eight weekly sessions (intensive phase) followed by four monthly booster sessions over a 6-month period. Women in the study were 31 women with a family history of breast cancer and 10 women with both a personal history and a family history of breast cancer (n = 41). All women were invited to participate in the study by clinic staff during a familial cancer clinic visit. Those who were unable to be approached during their visit were subsequently telephoned by clinic staff and invited into the study. Compared to baseline, women who participated in the group intervention were significantly more likely to improve their risk comprehension and to show a significant reduction in cancer-related distress, depression, anxiety, and unresolved grief at 6-month follow-up. While there have been some favorable results from the pilot studies of group interventions for high-risk women conducted to date, there are a number of methodological limitations to these studies. Firstly, in most studies women were invited by clinic staff to participate in a research project rather than attend a clinical service. Rate of uptake of the group service ranged from 21 to 66%, but was not reported for one out of the four studies (Kash et al., 1995). Secondly, to date outcome data on group interventions with high-risk women have included only North American samples. It is not known how these data generalize to an Australian population. Anecdotal evidence from our own clinic suggests that the interest in group interventions amongst familial cancer clinic patients may be more limited than the North American data suggest. It is therefore important to assess the perceived support needs of Australian familial cancer clinic patients in order to ensure that services are developed in accordance with patient needs and preferences, and to ensure that resources are utilized in the most efficient and cost-effective manner.
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While data on evaluations of psychoeducational and psychosocial interventions have been accumulating, few studies have reported on the unmet support needs of women at high risk of developing breast cancer. One North American study which examined interest in a support group among men and women tested for BRCA1 gene mutations, found that 28% of participants said that they would be interested in participating in a hypothetical support group (Hamann et al., 2000). Participants in this study who were gene carriers were no more likely to be interested in attending a support group than noncarriers. Women without a personal history of breast cancer were more interested in attending a familial cancer support group than those with a personal history. In contrast to the findings of another study involving oncology support groups (Bauman et al., 1992), which suggest that support group participants are younger and better educated, this study found that amongst men educational level was inversely correlated with interest and positively associated with age and family income. No demographic variables were found to predict interest in support groups amongst women. Although this study found that about a quarter of those who receive a test result may be interested in a support group, questions about the level of interest in support groups amongst those who decline testing or are ineligible for testing remain unanswered. Increasing attention has recently been given to the assessment of unmet needs amongst cancer patients. Needs assessment is a measurement technique that provides an index of patients’ perceptions of the issues with which they require help. Needs assessment yields a direct index of what the patient perceives they need help with, and indirectly measures perceived efficacy of a health service by its users (Foot and Sanson-Fisher, 1995). Needs assessment differs from related assessment constructs such as “patient satisfaction” surveys in that it directly links services with patient desires and is more solution-focused (Bonevski et al., 2000; Foot and Sanson-Fisher, 1995). Given that so few data are currently available on the perceived support needs of women at risk of hereditary breast cancer from the patient’s perspective, this methodology appeared most suited to addressing this area of enquiry. One recent British study has adopted this methodology to study the unmet information and support needs of a small sample (n = 39) of women with a primary relative with a diagnosis of breast cancer. This study found that needs for information were the predominant area of unmet need and the need to attend a support group was seen as not important or slightly important by 60% of the sample (Chalmers et al., 2001). The primary aim of the present study was to survey the unmet support needs of women at high risk of developing breast cancer. Secondly, we were interested in identifying the degree of interest amongst women with a family history of breast cancer to participate in support groups and other interventions, and to examine patient characteristics which influence an interest in support groups. Thirdly, we aimed to determine the preferred content and format of supportive group interventions which women with a family history of breast cancer perceive to be most relevant to their needs.
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METHODS Participants and Procedure The findings reported here are based on a sample of 173 unaffected women with a family history of breast cancer. Two recruitment strategies were employed. Firstly, 108 women were assessed as part of a more comprehensive study reported elsewhere involving women at increased risk of developing breast cancer who approached one of 14 metropolitan familial cancer clinics (and six rural clinics) for advice about their breast cancer (Meiser et al., 2000). These familial cancer clinics provide a comprehensive service according to National guidelines, which includes risk assessment, genetic testing, and advice regarding early detection and prophylactic strategies (National Health and Medical Research Council, 1999). Compared to generalist services, these familial cancer clinics provide specialist counseling through clinical geneticists, oncologist with specialist training in hereditary cancer and/or genetic counselors. An additional 65 women were recruited through one major metropolitan familial cancer clinic, identified through a database-generated list of consecutive women with a family history of breast cancer who attended the familial cancer clinic. Women recruited through these two methods were at “moderately increased risk” (lifetime risk of 1 in 4 to 1 in 8) or “high risk” (lifetime risk of 1 in 2 to 1 in 4) on the basis of their family history of breast cancer suggesting that their risk was increased relative to women at the Australian population risk (lifetime risk of 1 in 13) (National Breast Cancer Centre, 2000). This method of risk assessment was referred to because of the current uncertainty associated with risks imparted by breast cancer gene mutations and the inappropriateness of the Claus and Gail models to high-risk women (Claus et al., 1994; Gail et al., 1989). Because women attending familial cancer clinics have been found to have above-average educational levels and may therefore not be representative of the wider population of women with a family history of breast cancer (Cull et al., 1999; Meiser et al., 2000), we included 20 women in our sample who had not attended the clinic for counseling and instead received telephone counseling only. The risk status of the latter group of women is unknown, as they never attended the familial cancer clinic for risk assessment. Women were considered ineligible for study participation if they had a prior diagnosis of ovarian or breast cancer; were unable to give informed consent; or had limited literacy in English, since data were collected using self-report questionnaires. All participants were mailed the support needs survey together with an introductory letter and reply paid envelope. Measures The unmet needs questionnaire used in our study was developed by an expert panel consisting of a clinical geneticist, two genetic counselors and two research
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psychologists. It was also based on clinical experience with women with a family history of breast cancer and issues identified in the literature. A 28-item survey was specifically constructed for the present studies. The survey included Demographic Variables: Items included age, educational level, marital status, and parity. Unmet Support Needs: Nine items were developed on the basis of support needs identified in the literature and in consultation with the expert panel. Participants were asked to indicate their level of need for help in the last month with each issue using a 5-point Likert scale (where 1 = no need—not applicable; 2 = no need—need has already been satisfied; 3 = low need for help; 4 = moderate need for help; 5 = high need for help). Issues included obtaining information about risk, understanding information given, dealing with uncertainty, dealing with fears about developing breast cancer, dealing with the impact of breast cancer on the family, dealing with sadness, dealing with the loss of family members due to breast cancer, reassurance that the way you feel is normal, and talking with other women who have a family history of breast cancer. The format, response categories, and some items were adapted from two existing unmet needs questionnaires (Cancer Patient Needs Questionnaire and Supportive Care Needs Survey) developed to assess the unmet support needs of patients going through treatment for cancer (Bonevski et al., 2000; Foot and Sanson-Fisher, 1995) which have demonstrated acceptability, validity, and reliability. Our adaptation of these scales was found to have high internal consistency in the current sample (Cronbach’s α = 0.92). One additional open-ended item was added for participants to suggest other areas of unmet support needs which may not have been covered by the other need items. Service Needs: The survey included five items to gauge the level of interest amongst women at high risk in utilizing a variety of support services including attending a familial cancer clinic, informal telephone contact with another high-risk woman, an internet “chat room” for high-risk women, talking to a psychologist or social worker about matters related to being at risk for breast cancer, and meeting with a group of women who have a family history of breast cancer. Participants were asked to respond on a 4-point scale (ranging from “Not interested,” “Mildly interested,” “Moderately interested,” to “Very interested”). All participants were additionally asked to complete one open-ended item asking them for their additional comments or suggestions regarding support services for women with a family history of breast cancer. Group Content and Format: All women who indicated some level of interest in meeting with other women (i.e. those who were “mildly interested” to “very interested”) were asked to complete an additional eight items to determine their preferences for group content and format, location, and timing of meetings. Participants were asked to endorse more than one activity, if applicable.
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DATA ANALYSIS Data analysis was carried out in three stages. Firstly, descriptive statistics were used to characterize the sample in terms of sociodemographic variables, support needs, and preferences for support services delivery. Secondly, to assess associations between sociodemographic variables and support needs, scores on the Unmet Support Needs Scale were recoded into a continuous variable so that “no need” or “need satisifed” = 0, “low need” = 1; moderate need = 2; and high need = 3. An overall unmet support needs score was calculated for each respondent by summing the recoded scores of each of the nine items of the Unmet Support Needs Scale. To assess bivariate associations with support needs, Mann–Whitney U tests were performed for educational level, marital status, and having children, because the support needs variable did not satisfy normality assumptions and Spearman’s rank correlation, rather than Pearson’s correlations, was calculated for age. Thirdly, to assess patient characteristics that influence interest in support groups, a dichotomous variable was created of interest in attending a group. Participants were divided into those reporting not being interested in attending a support versus those who indicated being mildly, moderately or very interested. To assess bivariate associations with interest in support groups, chi-square analyses were carried out with educational (postschool qualifications vs. no postschool qualifications) level, marital status, and having children. A two-sample t-test was performed for the normally distributed variable of age, and a Mann–Whitney U -test to test for an association between the total unmet support needs scores and interest in support groups.
RESULTS Of the 306 women who met the eligibility criteria, 173 returned the questionnaire (response rate of 56%). The majority of participants (88%) had already attended a consultation at a familial cancer clinic at the time of completing the survey. Demographic data of the sample are summarized in Table I. Participants were found to be well educated with approximately three quarters (77.1%) of the sample with postschool qualifications (e.g. diploma, university degree), compared to 37% of women in the general Australian population (Australian Bureau of Statistics, 1997). Forty-nine women (28%) reported having received a predictive genetic testing result, although we did not ask women to report on their mutation status result. Unmet Support Needs The most prevalent (20.5%) moderate to high unmet support need for women in the present sample was the need for further information about their level of risk for developing breast cancer (Table II). Other needs identified by participants in an open-ended item included the need for more follow-up after a familial cancer clinic
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Thewes, Meiser, Tucker, and Tucker Table I. Demographics of Participants Variable Agea 50 years Marital status Married (or de facto) Never married Separated, divorced, widowed Education level No postschool qualifications Certificate and diploma level Bachelor and postgraduate level Employment status Home-maker Self-employed Part-time Full-time Retired Other (unemployed, student) Children Yes No a Mean
N
%
41 85 43
24.2 50.3 25.5
131 15 24
77.1 8.8 14.1
38 61 67
22.9 36.7 40.4
36 13 44 56 15 8
20.9 7.6 25.6 32.6 8.7 4.6
127 41
75.6 24.4
= 43.09 years, range 21–74 years, SD = 11.14.
consultation, quicker testing results, financial support for rural patients to attend a clinic, access to bereavement counseling, information about research developments, information about talking to children about cancer risk, and information about suitable contraception for women with a family history of breast cancer. Service Needs Table III provides a summary of additional service needs. Thirty-seven percent of the sample said that they would be moderately to very interested in attending a familial cancer clinic. About a third (28.4%) reported interest in visiting an internet chat room specific to women with a family history of breast cancer. Approximately one fifth (20.8%) of the sample said that they would be “moderately” to “very interested” in attending a meeting with a group of women with a family history of breast cancer. A further 54 women (31.2%) reported “mild” levels of interest in attending such a group meeting. Preferred Content, Format, Location, Timing, and Frequency of Group Meetings Table IV shows the reported preferred activities amongst the 90 women who expressed any degree of interest in attending groups (i.e. those who were “mildly interested” to “very interested”). The most endorsed group activity was
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Table II. Proportion of Women Reporting Moderate to High Unmet Support Needs Number of women reporting Percentage of sample reporting moderate to high levels moderate to high levels of unmet need of unmet need
Item Obtaining further information about your level of risk for breast cancer Dealing with the impact that breast cancer has had on your family Dealing with feelings of sadness Dealing with uncertainty about the future Dealing with fears about developing breast cancer Reassurance that the way you feel about your risk is normal Dealing with the loss of family members who had breast cancer Understanding the information you have been given about your level of risk Talking with other women who have a family history of breast cancer
34
20.5
29
17.4
25 24
15.2 14.4
23
14.0
21
12.6
20
12.0
17
10.2
15
9.1
Table III. Proportion of Sample Expressing Moderate to High Degree of Interest in Utilizing Services
Service Attending a familial cancer clinic to discuss issues related to your risk of developing hereditary breast ancer Visiting an internet “chat room” specifically designed for women with a family history of breast cancer Talking to a professional counselor about matters related to your risk for cancer Meeting with a group of women who have a family history of breast cancer Having informal phone contact with another woman of similar age to you who has a family history of breast cancer aA
Number of women moderately Proportion of sample moderately to very interested in to very interested in utilizing service utilizing service 64
37.0
49
28.4
42
24.3
36a
20.8
29
16.8
further 54 women reported they were “mildly interested” in attending a group.
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Table IV. Preferred Activities of Support Group Amongst Participants Who Expressed an Interest in Attending a Group (n = 90) Activity Receiving further information about cancer genetics Discussion of experiences and feelings related to having a family history of cancer Learning stress management strategies Learning strategies to manage worry about developing cancer Other (e.g. dietary and lifestyle information, research developments, talking to children about risk)
Number of participants endorsing activity
Proportion of participant endorsing activity (%)
67
74.4
60
66.6
55
61.1
53
58.8
6
6.6
the provision of further information about breast cancer genetics, which was endorsed by about three quarters of the sample (74.4%). With respect to format of delivery, 75.3% of participants preferred a face-to-face meeting over a teleconference meeting (24.7%). The familial cancer clinic was preferred by 44.7% of women, compared to 39.5% who would prefer a nonhospital location. Evening meetings were favored over daytime meetings (59.5% vs. 40.5%), and weekends were marginally preferred over weekdays (51.9% vs. 48.1%). With respect to frequency of meetings, infrequent meetings were preferred. Bimonthly meetings were preferred by 41.2% of the sample over weekly, monthly, and three monthly meetings (which were preferred by 1.2%, 20.0%, and 18.5% of the sample respectively).
Factors Associated With Unmet Support Needs and Interest in Attending Groups Table V shows the results of bivariate analyses of predictors of unmet needs. Having a postschool education was significantly associated with higher levels of unmet needs (Z = −2.128, p = 0.03). No other demographic variables were associated with level of unmet support needs. Table VI shows the results of bivariate analyses of predictors of interest in a support group. Those who were interested in attending groups reported significantly higher overall levels of unmet support needs compared to those not interested in attending (Z = −4.20, p < 0.001). No sociodemographic variables were found to be associated with interested in attending a group in the present sample.
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Table V. Bivariate Predictors of Total Unmet Needs Variable
Mean of total unmet needs
Age Education No postschool education Postschool education Marital status Never married/widowed/divorced/separated Married/de facto Children Yes No
Z
r
p
0.00
0.99
2.92 4.17
−2.128
0.03
4.86 3.87
−1.04
0.30
4.01 4.27
−0.73
0.46
DISCUSSION Interest in Receiving Further Information The results of the present study suggest a strong level of interest in receiving further information about breast cancer genetics amongst women at high risk of developing hereditary cancer, and support the conclusions of another recent survey of unmet needs amongst women with a primary relative with breast cancer (Chalmers et al., 2001). The high level of unmet needs for information expressed by participants in the present study may have been influenced by poor recall of information provided during consultations. Studies have reported that counselees
Table VI. Bivariate Predictors of Interest in Attending a Group Variable
Mean (SD)
t/Z
χ2
Age Interested 42.28 (11.77) 0.97 Not interested 43.96 (10.52) Total unmet need Interested 6.16 −4.20 Not interested 1.71 Percentage interested in attending group (%) Education No postschool Postschool Martial status Singlea Married/de facto Children Yes No a Includes:
p 0.33
