Evaluation of the National External Breast Prostheses Reimbursement Program

2.3 Impact review

Page last updated: 05 November 2010

The aim of the impact review was to canvass women's experiences with, and response to, the program. The methodology was developed in order to best obtain the available information, and to give as many women as possible the chance to participate in the study, within the given scope of the evaluation.

2.3.1 Scoping interviews
2.3.2 Online survey
2.3.3 Characteristics of survey respondents
2.3.4 Follow-up interviews and focus groups with women

2.3.1 Scoping interviews

Scoping interviews were conducted in September/ October 2009 with key stakeholders to seek their views regarding the program and evaluation methodology. The scoping interviews provided insight into the support available to women following a mastectomy, and identified some additional informants for the evaluation. The focus of these interviews was also to determine the best way of approaching women to participate in the survey, particularly women of an Aboriginal and Torres Strait Islander or culturally and linguistically diverse background, as it was recognised that these groups may be less likely to access the program.

The list of stakeholders consulted for the scoping interviews was agreed in consultation with the department. Stakeholders included key individuals from the main breast cancer and cancer organisation networks, and are detailed in the table 1. All stakeholders were sent a letter by the department prior to Urbis contacting them, which notified them of the research and invited them to participate. Interviews followed a formal discussion guide which was developed in consultation with the department (see appendix C). The majority of interviews were conducted face to face, however two interviews were conducted over the phone.

Table 1 – List of stakeholders for scoping interviews

National Breast and Ovarian Cancer Centre (NBOCC)
Breast Cancer Network Australia (BCNA)
Cancer Council Australia (CCA)
National Breast Cancer Foundation (NBCF)
Cancer Voices of Australia
McGrath Foundation
Peter McCallum Cancer Centre Top of page

2.3.2 Online survey

An online survey was developed, in consultation with the department, for women who had a mastectomy as a result of breast cancer and who were using an external breast prosthesis. The aim of the survey was to ensure an anonymous means of providing feedback for women who may have heard about, or accessed the National External Breast Prostheses Reimbursement Program. Key areas of exploration included: awareness of the program, participation in the program, and experience of using the program. A paper version of the survey was also developed for women who did not have access to the internet or who were not comfortable completing the survey online. Women could request a paper survey by phoning a toll free number (arranged by Urbis). These surveys were posted to women with a reply paid envelope so that no costs were incurred in participating in the survey.

A pilot of the survey was sent as an online link to 60 women and in paper form to 10 women through the Breast Cancer Network Australia (BCNA) at the end of November 2009. The purpose of the pilot survey was to establish readability and clarity of the survey instrument. The decision to use BCNA to pilot the survey was taken in consultation with the department, as BCNA has within their membership a group of women who had experienced breast cancer and who had volunteered to participate in research projects. This provided timely feedback on the pilot survey before the final version of the survey was made publicly available. As no changes were required following the pilot survey, the pilot results have been included in the survey results.

A number of organisations were invited to assist in promoting the survey to women. By promoting the survey through a range of channels, the research team sought to minimise bias and reach as many women as possible. The following were undertaken in an effort to promote the survey:
  • advertising the survey in BCNA's Beacon newsletter, which has a circulation of 38,000 breast cancer survivors and supporters
  • hosting the link to the survey on the NBOCC website
  • inviting Cancer Councils in each state and territory to distribute information about the survey and/or the link to the survey to individuals and members of affiliated support groups, particularly Aboriginal and Torres Strait Islander and culturally and linguistically diverse women
  • extending invitations to organisations including the Country Women's Association, Probus, Migrant Resource Centres in Northern Queensland and Western Sydney
  • distributing a flyer and the survey link to contacts at eleven major hospitals treating breast cancer across Australia
  • communicating the survey through breast care nurses and at a national breast care nurse conference
  • communicating the survey through academics from Sydney University, Queensland University, Monash University and University of Melbourne who have expertise in the area and networks within various communities
  • communicating the survey through the Clinical Oncological Society of Australia (COSA).
The survey was originally intended to be live from the first week of December 2009 to the middle of February 2010, however early responses indicated a lack of participation by women under 40 years, women of a culturally and linguistically diverse background and Aboriginal and Torres Strait Islander women. Further efforts were made to communicate the survey via additional avenues and the decision was made to keep the survey open for another two weeks to the end of February 2010.

Additional efforts made during the survey period to communicate the survey to young women, women of a culturally and linguistically diverse background or Aboriginal and Torres Strait Islander women included the following:
  • an invitation to the Young Ones (a support organisation for young women with breast cancer)
  • the Aboriginal and Torres Strait Islander and culturally and linguistically diverse sub-committees of the Cancer Council Australia
  • distributing the survey via Aboriginal and Torres Strait Islander Health Info Net's e-message stick and posted on their website
  • contacting BreaCan to promote the survey to users of its program for younger women.
Preliminary results from the survey were presented in the second progress report in March 2010. Demographic characteristics of survey respondents are provided below (section 2.3.3); other results from the survey are discussed in greater detail in chapter 3 and chapter 4 of this report.

A copy of the survey can be found at appendix D. Promotional material used to disseminate information about the survey can be found at appendix E. Top of page

2.3.3 Characteristics of survey respondents

Age

There was some variation in the age of respondents, although the majority were clustered in the middle age ranges. Approximately two thirds of respondents (64.7%) were aged between 50 and 69 years. A further 22.4% were aged 30 to 49 years. The remaining 8.9% were aged over 70 years. The results are shown in table 2.

An effort was made by the evaluation team to invite further women aged 70 to 80 years to participate in our research due to inconsistency with Medicare Australia data on age range. According to Medicare Australia data, 23% of women who had accessed the program between December 2008 and December 2009 were aged 70 to 80 years, yet only 8% of the survey sample was in this age range.

The number of women who completed the survey aged 49 years and under was in accordance with Medicare Australia data. Some stakeholders suggested that younger women were more likely to consider breast reconstruction surgery, both because they were more inclined to feel self conscious about their bodies post-mastectomy, and because they were more open minded to having plastic surgery. It was noted however, that young women may still require an external prosthesis whilst waiting for surgery, undergoing chemotherapy or radiation treatment, or waiting for their scar tissue to heal. Breast care nurses reported that few women chose to have reconstructive surgery at the time of, or closely following, their mastectomy.

Table 2 – Age of women who completed the survey and who have accessed the program (n=214)

Age group
Percentage
Up to 49 years24
50 to 69 years64
70 years and over8
Preferred not to say4
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State of residence

As shown in figure 1, respondents came from all states and territories. The rate of response per jurisdiction roughly approximates the spread of population across the jurisdictions (Australian Bureau of Statistics, 2009).

Interestingly, latest data shows that during the period of 1998 to 2002 the Australian Capital Territory had the highest average annual age-standardised rate of breast cancer with 127 new cases per 100,000 (AIHW, 2009). Evaluation survey data and Medicare Australia data for the program however are in accordance with the population ratios for each state and territory according to the most recent census data. Women living in areas in the highest socioeconomic status quintile have been shown to have significantly higher rates of breast cancer (AIHW, 2009).

Figure 1 – In which state do you currently live? (n=362)

Text version of figure 1
State
Percentage
NSW34.50
Vic18.80
Qld15.70
WA9.10
SA9.10
Tas5.50
NT3.90
ACT2.50
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Location of residence (remoteness)

As shown in figure 2, respondents resided in a variety of settings. While the highest proportion (41.4%) lived in a capital city, more than a third (35.4%) lived in a regional city. Smaller proportions resided in more remote locations, as would be expected based on the general distribution of population to such areas.

This is in agreement with AIHW data, which reports that women living in the areas of highest urbanisation had significantly higher rates of diagnosis in 2002-2006; this ranged from 117 new cases per 100,000 in major cities to 77 per 100,000 in very remote areas (AIHW, 2009).

Figure 2 – Residential location of women who completed the survey and have accessed the program (n=214)


Text version of figure 2
Residential location
Percentage
Major/ capital city39
Regional city/ large country town36
Small town/ remote area23
Prefer not to say2
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Level of education

Survey respondents were a reasonably educated group as indicated in figure 3 below, with over a quarter (29%) having completed a university degree and one fifth (19%) having attended TAFE or technical college.

Other evaluation respondents did not report level of education to be a particular determinant of access to the program. However, socioeconomic status was recognised as an important indicator of whether a woman could afford the up-front payment of a prosthesis.

Figure 3 – What level of education have you completed? (n=362; multiple response)


Text version of figure 3
Level of education
Percentage
University29
TAFE or technical college19
Apprenticeship or cadetship6
Year 12 or equivalent15
Year 10 (school certificate) or equivalent31
Prefer not to say3
Others12
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Aboriginal and Torres Strait Islander women, women of a culturally and linguistically diverse background, women with a disability

Survey respondents were asked to specify whether they belonged to three potentially disadvantaged groups: people with a disability, Aboriginal or Torres Strait Islander people or people who speak English as a second language. Only a few respondents identified as having one or more of these characteristics, as shown in table 3. Close to one quarter of respondents chose not to answer this question.

It is unclear how many Aboriginal and Torres Strait Islander women or women from a culturally and linguistically diverse background are accessing the program. There is anecdotal evidence from evaluation respondents that many of these women face barriers in accessing the program (as discussed in section 3.1.1), however it was not possible to determine the number of Aboriginal and Torres Strait Islander women or those of a culturally and linguistically diverse background who fall into this category. Stakeholders have suggested possible improvements to the administration of the program to these women to improve access (as discussed in section 3.4.1).

Table 3 – Do any of the following apply to you? (n=362)

Statement of belonging
Percentage
I identify as Aboriginal or Torres Strait Islander0
I speak English as a second language3
I identify as having a disability6
None of the above69
Prefer not to say23
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Time and type of surgery

The time of survey respondents' breast surgery covered a broad spectrum. As indicated in figure 4, the largest proportion of survey respondents (42%) had had their most recent procedure within the last two years. Approximately one in three respondents (33%) had had their surgery two to five years ago, and a further 23% had had their surgery more than five years ago.

As shown in figure 5, the bulk of survey respondents had a full mastectomy and thus met the eligibility criteria for participation in the program. The majority of respondents (76%) had had a full, single mastectomy. A further 18% had had a bi-lateral mastectomy.

Figure 4 – How long ago did you have your breast surgery? (n=362)


Text version of figure 4
Time
Percentage
More than 5 years ago23
2-5 years ago33
1-24 months ago42
Less than 1 month ago2
Prefer not to say1

Figure 5 – What kind of breast surgery have you had? (n=362)


Text version of figure 5
Kind of breast surgery
Percentage
Double or bilateral mastectomy18
Full mastectomy76
Partial mastectomy4
Prefer not to say1
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Previous use of state/territory assistance schemes for breast prostheses

A minority of survey respondents (36%) had previously received financial assistance for a breast prosthesis under state or territory-based schemes.

Of the 131 women who had previously used such schemes, approximately one in three (33%) did so in Victoria. Notwithstanding possible interstate migration in the period after accessing state-based schemes, it is interesting to compare respondents' current state of residence with frequency of access to schemes in these states. The comparison suggests a considerable level of variation in respondents' usage of schemes across jurisdictions. Whereas 63% of respondents currently living in Victoria accessed a scheme in this state, 23% of respondents in NSW have previously used an assistance scheme in this state and 14% of those residing in NT have accessed an NT based scheme.

Figure 6 – Which state/territory program/s have you accessed? (n=131; multiple response)


Text version of figure 6
State/ territory
Percentage
Vic32.8
NSW22.1
Qld17.6
SA9.9
WA9.2
Tas7.6
ACT2.3
NT1.5
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Involvement with breast cancer-related groups and networks

As shown in table 4 a number of survey respondents had some involvement (slightly or very involved) with one or more breast cancer related groups. However the extent of their involvement in the groups listed was not substantial. For each group listed, those describing themselves as 'very involved' were a small minority. It should also be noted that a number of women who completed the postal survey chose not to answer this question, so caution needs to be given to the sample size for each group listed.

The group in which the highest proportion was involved was Breast Cancer Network Australia. Half of the survey respondents (50%) described themselves as 'slightly involved' in this organisation, and a further 7% was 'very involved'. About 1 in 3 respondents (34%) were involved in local support groups; those who were involved in such groups were almost as likely to be very involved as slightly involved.

Table 4 – How involved are you with the following groups? (n=362)

Organisation
Not involved (%)
Slightly involved (%)
Very involved (%)
Number of women who did not answer this question
Breast Cancer Network Australia3150741
Local breast cancer support groups52181651
McGrath Foundation6511279
Cancer Council4827669
National Breast Cancer Foundation5027276

Note: the totals for each row above do not equal 100% as not all women answered each question.

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2.3.4 Follow-up interviews and focus groups with women

Following the survey, it was evident that there were groups of women who were under-represented in the survey responses. It was noted that some of these women were generally also under-represented in incidence rates of breast cancer. Women of a culturally and linguistically diverse background, Aboriginal and Torres Strait Islander women, and women over 70 years of age were all underrepresented in the survey. Despite the wide promotion of the survey, a survey instrument may not be the preferred format for some women in discussing such a sensitive issue. It may also exclude women who are not computer literate or do not have high English literacy skills.

Younger women (aged 40 years and under) were also recognised as a group early in the evaluation that may be under-represented in accessing the reimbursement program.

In order to provide alternative opportunities for participation in the evaluation, assistance was sought from a number of people or organisations. Contact was made with the following:
  • McGrath breast care nurses in locations with high proportions of Aboriginal and Torres Strait Islander, culturally and linguistically diverse, younger or older patients
  • Urbis's Aboriginal sub-consultants and sub-consultants of a culturally and linguistically diverse background due to their respective community networks
  • National Aboriginal Community Controlled Health Organisation (NACCHO).
These individuals or groups were asked to promote the evaluation to the networks. Where women expressed a willingness to participate, interviews or focus groups were arranged. No individual was contacted by Urbis without having first given her consent to participate.

The following were arranged as part of the follow-up consultation process:
  • A focus group with five women of Arabic-speaking background arranged by an Arabic-speaking sub-consultant of Urbis. An evaluation team member facilitated the focus group, and the sub-consultant acted as an interpreter.
  • Follow up consultations with eight women who had accessed the program and were willing to provide verbal feedback.
A focus group was arranged with a small number of Aboriginal women (organised by one of Urbis's Aboriginal sub-consultants), however this was later cancelled as women withdrew for various reasons. This was not rescheduled due to reasons of sensitivity and difficulty in obtaining participants.

Follow up consultations with women followed a structured discussion guide which was developed in consultation with the department (found at Appendix C).

Altogether, 377 women who had experienced breast cancer participated in the evaluation through surveys, emails, interviews, or focus groups.