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Do women have equitable access to quality breast prosthesis services?

Do women have equitable access to quality breast prosthesis services? P Livingston, S Roberts, V White, A Gibbs, D Bonnici and D Hill Centre for Behavioural Research in Cancec Anti-Cancer Council of Victoria significant gaps exist around current breast prosthesis sewices for Australian women. These gaps include the timeliness and quality o information provision, the f disparity in financial assistance,and the lack of knowledge regarding the determinants of what constitutes a "quality"breast prosthesis. Revised policy initiativesare central to addressing these gaps to ensure equitable access to quaiity breast prosthesis sewices. espite considerable advances in diagnosis and treatment, breast cancer remains a significant public health issue. One in 12 women in Australia will develop breast cancer in their lifetime.' Approximately 42% of women diagnosed with breast cancer in 19W2had a mastectomy as their primary surgical treatment. Most, if not all women, will experience some degree of psychological morbidity following a breast cancer diagnosis3 and subsequent surgery?*5 Women must cope with the realistic fears associated with a cancer diagnosis and confront the consequences of changes to their physical appearance. These include the absence of a breast, tight skin over the chest wall and an absent nipple-areolar complex.6 These changes have many potential implications including a sense of disfigurement, impaired marital and social relationships and a loss of femininiq7 Following mastectomy, the provision of an appropriate prosthesis may reduce this sense of disfigurement, impairment and loss. It is estimated that up to 90% of women who have had a mastectomy use breast prostheses.8 At present, little is known about how women access information about breast prostheses and hospital rebates, their patterns of prosthesis use, satisfaction levels and how the prosthesis impacts on their quality of life. The considerable variability in women's access to BcNs or BCSNs is due to the role and functions permitted of them within the hospital system as well as the educational preparation for the role. In Victoria, a Breast Care Distance Education tertiary course has been established by the Anti-Cancer Council of Victoria and LaTrobe University to prepare nurses for this specialist role. There are currently 230 BCNs attached to Victorian metropolitan and country hospitals. However, the majority of hospitals have BCNs who are employed in the wards as part of the nursing team, rather than as dedicated nurses who provide information and support to women who have had breast cancer surgery. Anecdotal evidence suggests that if BCNs are not formally established within the hospital system, women may not receive ongoing information regarding breast prostheses, or be aware of the potential rebates or subsidies because there are no existing protocols for information dissemination. At present, there is no standard rebate for initial breast prostheses across the Australian public hospital system. For public patients, a subsidy or full rebate may be available to women to support the purchase of their first prosthesis from the treating hospital as part of their episode of care. In Victoria, Western Australia and New South Wales, the amount provided is at the discretion of the treating hospital. Rebates can range from virtually nothing through to the full cost of a prosthesis. Anecdotal evidence suggests that in some hospitals, whether full rebates are made available to women is dependent upon the assertiveness of the BCN with the funds administrators, typically the hospital administration or supplies department. Over the last twenty years, breast care nurses (BCNs) and breast care support nurses (BCSNs) have played an increasingly important role in the provision of breast care services for women. Information about breast prostheses has largely been provided to women by BCNs or BCSNs, whose role is to visit breast cancer patients and provide information and support, as well as assistance with completion of prosthesis rebate forms. ___ Correspondence Dr PM Livingston, Centre for Behavioural Research in Cancer Anti-Cancer Council of Victoria 100 Drummond Street, Carlton South 3053 Fax: 61 3 9635 5380.E-mail: Trish.Livingston@accv.org.au AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH 2000 VOL 24 NO 4 Point of View ~ ~ Do women _ _ _ equitable_ _ _ _ to _ ~ have _ ~ _ _ access ~ quality breast prosthesis services? ___ - _ ~~~ ~ ~~~~ ~ ~ In Queensland, for women who have a pensioner or health care card, both initial and replacement breast prostheses are provided free of charge. For all other women, a cost is incurred. In South Australia, public hospitals make provision for an initial prosthesis as part of their overall treatment and no extra charge is incurred. For replacement prostheses, funding up to $250 can be obtained through the South Australia Independent Living Equipment Program for those with a health care card or concession card. In Victoria, women without private health insurance who need a replacement prosthesis, can apply to the Program for Aids for Disabled People (PADP) for a rebate on the cost of the prosthesis. Privately insured patients with ancillary cover are entitled to receive the gap between their health benefit fund and the PADP upper level contribution of $300. In Tasmania, women who apply for funding are required to pay the first $50 towards their prosthesis and then the rebate is means tested against the woman’s income. If they are eligible for a health care card or concession card, a maximum of $160 is available through the Statewide Breast Prosthesis Scheme. In New South Wales, women with limited means, who have a health care card or a pension, can apply through PADP to cover the cost of a prosthesis. In Queensland, the Home Medical Aids Scheme does not provide funding for prostheses. In the Australian Capital Territory (ACT), the ACT Equipment Scheme provides up to $150 for a replacement prosthesis. Women who seek financial assistance from PADP ‘type’ schemes are faced with several issues. First, many of the schemes are based on the premise that individuals are ‘disabled’. Second, the scheme is priority-based, that is, a person is assessed on a perceived ‘clinical need’. Women can experience a delay of up to 12 months between application and receipt of financial support due to competition for funds with other applicants. No retrospective financial support is available. Women cannot purchase their prostheses until they have received the rebate from PADP. Breast prostheses are available from retail outlets across metropolitan and rural Australia where specially trained personnel fit them. Breast prostheses manufacturers provide retail staff with training on how to fit and care for the prosthesis. These specially trained personnel are in a position to play a significant role in influencing women’s use and adjustment to their prostheses by providing a supportive atmosphere and reassurance to women during this stressful time. However well-intentioned fitters may be, they may not have the necessary training to adequately deal with the psychological and emotional issues many women experience. Previous studies have indicated that the interpersonal styles of the fitters vary enormously with some minimising attention to the surgery, others mirroring client’s feelings of joy or sadness, while others remain aloof, or change the subject when confronted with client’s emotional problems? The impact that prosthesis fitters have on women’s overall satisfaction with the prosthesis experience is unclear. Previous studies conducted in Australia and overseas have found that approximately 30% of women were dissatisfied with their p r o s t h e ~ i s . ~ ’ ~ ”Dissatisfaction reflected problems in ~’” choosing clothes, such as the need to wear loose fitting garments and difficulty in dre~sing.’”~ Other problems include lack of privacy during fitting; being fitted by a man, and the attitude of the Other women have found that the prosthesis did not improve their body image or relieve their sense of deformity, but rather was a constant reminder of the disease.6 Fitters have reported higher levels of satisfaction among women who were fully informed about the fitting procedure, which involved counselling during the hospital stay and reading literature on the subject, prior to the Fitters also noted that although very expensive prosthesis are on the market, they do not appear to influence client satisfaction? For some women, however, cost is a major concern. 15 It is evident that significant gaps exist around current breast prostheses services for Australian women. These gaps reflect issues related to accessibility, equity, quality and financial resources. In Victoria, the Department of Human Services Breast Care Victoria is funding a review to document current administrative processes, information provision and breast prosthesis fitting procedures. A further priority is to determine what constitutes a ‘quality’ breast prosthesis, not only from the consumer’s perspective, but also from that of the health professional and service provider. Having obtained this information, it will be critical that this informs future policy development. Only in this way can the provision of equitable access to quality breast prosthesis services for women be ensured. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Australian and New Zealand Journal of Public Health Wiley

Do women have equitable access to quality breast prosthesis services?

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Publisher
Wiley
Copyright
Copyright © 2000 Wiley Subscription Services, Inc., A Wiley Company
ISSN
1326-0200
eISSN
1753-6405
DOI
10.1111/j.1467-842X.2000.tb01612.x
Publisher site
See Article on Publisher Site

Abstract

P Livingston, S Roberts, V White, A Gibbs, D Bonnici and D Hill Centre for Behavioural Research in Cancec Anti-Cancer Council of Victoria significant gaps exist around current breast prosthesis sewices for Australian women. These gaps include the timeliness and quality o information provision, the f disparity in financial assistance,and the lack of knowledge regarding the determinants of what constitutes a "quality"breast prosthesis. Revised policy initiativesare central to addressing these gaps to ensure equitable access to quaiity breast prosthesis sewices. espite considerable advances in diagnosis and treatment, breast cancer remains a significant public health issue. One in 12 women in Australia will develop breast cancer in their lifetime.' Approximately 42% of women diagnosed with breast cancer in 19W2had a mastectomy as their primary surgical treatment. Most, if not all women, will experience some degree of psychological morbidity following a breast cancer diagnosis3 and subsequent surgery?*5 Women must cope with the realistic fears associated with a cancer diagnosis and confront the consequences of changes to their physical appearance. These include the absence of a breast, tight skin over the chest wall and an absent nipple-areolar complex.6 These changes have many potential implications including a sense of disfigurement, impaired marital and social relationships and a loss of femininiq7 Following mastectomy, the provision of an appropriate prosthesis may reduce this sense of disfigurement, impairment and loss. It is estimated that up to 90% of women who have had a mastectomy use breast prostheses.8 At present, little is known about how women access information about breast prostheses and hospital rebates, their patterns of prosthesis use, satisfaction levels and how the prosthesis impacts on their quality of life. The considerable variability in women's access to BcNs or BCSNs is due to the role and functions permitted of them within the hospital system as well as the educational preparation for the role. In Victoria, a Breast Care Distance Education tertiary course has been established by the Anti-Cancer Council of Victoria and LaTrobe University to prepare nurses for this specialist role. There are currently 230 BCNs attached to Victorian metropolitan and country hospitals. However, the majority of hospitals have BCNs who are employed in the wards as part of the nursing team, rather than as dedicated nurses who provide information and support to women who have had breast cancer surgery. Anecdotal evidence suggests that if BCNs are not formally established within the hospital system, women may not receive ongoing information regarding breast prostheses, or be aware of the potential rebates or subsidies because there are no existing protocols for information dissemination. At present, there is no standard rebate for initial breast prostheses across the Australian public hospital system. For public patients, a subsidy or full rebate may be available to women to support the purchase of their first prosthesis from the treating hospital as part of their episode of care. In Victoria, Western Australia and New South Wales, the amount provided is at the discretion of the treating hospital. Rebates can range from virtually nothing through to the full cost of a prosthesis. Anecdotal evidence suggests that in some hospitals, whether full rebates are made available to women is dependent upon the assertiveness of the BCN with the funds administrators, typically the hospital administration or supplies department. Over the last twenty years, breast care nurses (BCNs) and breast care support nurses (BCSNs) have played an increasingly important role in the provision of breast care services for women. Information about breast prostheses has largely been provided to women by BCNs or BCSNs, whose role is to visit breast cancer patients and provide information and support, as well as assistance with completion of prosthesis rebate forms. ___ Correspondence Dr PM Livingston, Centre for Behavioural Research in Cancer Anti-Cancer Council of Victoria 100 Drummond Street, Carlton South 3053 Fax: 61 3 9635 5380.E-mail: Trish.Livingston@accv.org.au AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH 2000 VOL 24 NO 4 Point of View ~ ~ Do women _ _ _ equitable_ _ _ _ to _ ~ have _ ~ _ _ access ~ quality breast prosthesis services? ___ - _ ~~~ ~ ~~~~ ~ ~ In Queensland, for women who have a pensioner or health care card, both initial and replacement breast prostheses are provided free of charge. For all other women, a cost is incurred. In South Australia, public hospitals make provision for an initial prosthesis as part of their overall treatment and no extra charge is incurred. For replacement prostheses, funding up to $250 can be obtained through the South Australia Independent Living Equipment Program for those with a health care card or concession card. In Victoria, women without private health insurance who need a replacement prosthesis, can apply to the Program for Aids for Disabled People (PADP) for a rebate on the cost of the prosthesis. Privately insured patients with ancillary cover are entitled to receive the gap between their health benefit fund and the PADP upper level contribution of $300. In Tasmania, women who apply for funding are required to pay the first $50 towards their prosthesis and then the rebate is means tested against the woman’s income. If they are eligible for a health care card or concession card, a maximum of $160 is available through the Statewide Breast Prosthesis Scheme. In New South Wales, women with limited means, who have a health care card or a pension, can apply through PADP to cover the cost of a prosthesis. In Queensland, the Home Medical Aids Scheme does not provide funding for prostheses. In the Australian Capital Territory (ACT), the ACT Equipment Scheme provides up to $150 for a replacement prosthesis. Women who seek financial assistance from PADP ‘type’ schemes are faced with several issues. First, many of the schemes are based on the premise that individuals are ‘disabled’. Second, the scheme is priority-based, that is, a person is assessed on a perceived ‘clinical need’. Women can experience a delay of up to 12 months between application and receipt of financial support due to competition for funds with other applicants. No retrospective financial support is available. Women cannot purchase their prostheses until they have received the rebate from PADP. Breast prostheses are available from retail outlets across metropolitan and rural Australia where specially trained personnel fit them. Breast prostheses manufacturers provide retail staff with training on how to fit and care for the prosthesis. These specially trained personnel are in a position to play a significant role in influencing women’s use and adjustment to their prostheses by providing a supportive atmosphere and reassurance to women during this stressful time. However well-intentioned fitters may be, they may not have the necessary training to adequately deal with the psychological and emotional issues many women experience. Previous studies have indicated that the interpersonal styles of the fitters vary enormously with some minimising attention to the surgery, others mirroring client’s feelings of joy or sadness, while others remain aloof, or change the subject when confronted with client’s emotional problems? The impact that prosthesis fitters have on women’s overall satisfaction with the prosthesis experience is unclear. Previous studies conducted in Australia and overseas have found that approximately 30% of women were dissatisfied with their p r o s t h e ~ i s . ~ ’ ~ ”Dissatisfaction reflected problems in ~’” choosing clothes, such as the need to wear loose fitting garments and difficulty in dre~sing.’”~ Other problems include lack of privacy during fitting; being fitted by a man, and the attitude of the Other women have found that the prosthesis did not improve their body image or relieve their sense of deformity, but rather was a constant reminder of the disease.6 Fitters have reported higher levels of satisfaction among women who were fully informed about the fitting procedure, which involved counselling during the hospital stay and reading literature on the subject, prior to the Fitters also noted that although very expensive prosthesis are on the market, they do not appear to influence client satisfaction? For some women, however, cost is a major concern. 15 It is evident that significant gaps exist around current breast prostheses services for Australian women. These gaps reflect issues related to accessibility, equity, quality and financial resources. In Victoria, the Department of Human Services Breast Care Victoria is funding a review to document current administrative processes, information provision and breast prosthesis fitting procedures. A further priority is to determine what constitutes a ‘quality’ breast prosthesis, not only from the consumer’s perspective, but also from that of the health professional and service provider. Having obtained this information, it will be critical that this informs future policy development. Only in this way can the provision of equitable access to quality breast prosthesis services for women be ensured.

Journal

Australian and New Zealand Journal of Public HealthWiley

Published: Aug 1, 2000

There are no references for this article.