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Needs assessment of rural and remote women travelling to the city for breast cancer treatment

Needs assessment of rural and remote women travelling to the city for breast cancer treatment Abstract The purpose of this study was to assess the needs of rural women travelling to the city for breast cancer treatment. Participants included 80 women aged between 34 and 80 years living in rural NSW and South Australia who travelled for breast cancer treatment. After completing treatment, participants completed a brief telephone survey on the needs of rural women travelling for treatment. Findings Afaf Girgis New South Wales (CancerCouncil’s Cancer Education Research Program (CERP) Philippa Williams and Linda Beeney National Health and Medical Research Council, National Breast Cancer Centre, New South Wales reast cancer remains the most common cause of cancer deaths among women in Australia, accounting for 7,520 deaths in urban areas and 2,644 deaths in rural areas from 1991 to 1994.’ Furthermore, the incidence of breast cancer continues to increase at a rate of 1.5% per year with approximately 8,000 cases diagnosed each year.’ According to the: Australian Bureau of Statistics (1991 census figures), 47% of women aged 35 years and over reside in noncapital areas.2 Based on a number of clinical trial^,^-^ a consensus now exists that women with operable breast cancer can be treated with a mastectomy or breast-conserving surgery, in conjunction with adjuvant therapy, such as radiotherapy a n d o r chemotherapy.6 While research suggests that women who have undergone breast-conserving therapy have fewer problems with sexuality and body image than women who have had a mastectomy,’ overall psychological adjustment seems to be similar for the two groups.*.’ Fallowfield (1990) found that women who were offered a choice between breastconserving therapy and mastectomy showed less depression 12 months after surgery compared to women not offered a choice. However, it is unclear if this finding is due to the availability of choice or involvement in the decision-making process. l o Although breast-conserving therapy and mastectomy are equa1l:y effective in the treatment of early-stage breast cancer,lI research both overseas12 and i n , 4 ~ s t r a l i a ’ ~ - ’ ~ suggests that rural women are significantly more likely to undergo mastectomy compared to urban 1998 VOL. 22 NO. 5 women. This may be associated with the need for rural women undergoing breastconserving surgery to travel to an urban treatment centre for adjuvant therapy. The House of Representatives Standing Committee on Community Affairs Report on the Management and Treatment of Breast Cancer (1995) identified that women diagnosed with breast cancer living in rural and remote areas ofAustralia have special needs and may require special support when undergoing treatment for breast cancer.2 Women living in rural o r remote areas experience considerable social and financial costs when travelling for adjuvant therapy. It is the goal of the House of Representatives that every Australian woman faced with breast cancer, “regardless of where she lives and whatever her social and economical background, should have the very best treatment and support available”.* Submissions to government inquiries from rural women with breast cancer described the increased burden experienced by rural women and their families in travelling for treatment and the resulting lack of treatment choice.16 The purpose of the current study was to assess the needs of rural women travelling to the city for breast cancer treatment and recommend appropriate interventions to ensure equity in availability and access to breast cancer treatment for all women. In this context, the term ‘rural’ is used to describe an area of residence outside the metropolitan area in which the treatment centre is located (In most cases, this would be more than 100 kilometres from a treatment centre). revealed that more than 90% of women travelled for treatment due to the lack of available treatment centres closer to home and on average they spent 6.79 weeks (SD=4.73) away from their home and family. Findings also showed that 89% identified specific problems for rural women, with social and practical support being primary concerns. Although the majority of women were provided with some type of social support, only 39% of women received financial assistance and 19% of these women had trouble claiming money for which they were eligible. Recommendations of appropriate interventions to ensure equity in the availability and access to breast cancer treatment for all women are discussed. (AustNZJPublicHealth 1998;22:525-7) Correspondenceto: Dr Cindy Davis, NHMRC National Breast Cancer Centre, PO Box 572, Kings Cross, NSW 201 1. Fax: (02) 9326 9329; e-mail: cindyd @ nbcc.org.au AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Davis et al. 10ofl ao Figure 1: Percentage of rural women receiving assistance when travelling for breast cancer treatment. Legend: a - received financial assistance; b - told about cancer support services; c - used support services; d - used a BCSS volunteer; e - used a support group. Figure 2: Percentage of rural women experiencing problems when travelling for breast cancer treatment. Legend: a - special problems (i.e. social and practical support, isolation); b - lack of information about travel assistance; c disruption to family life; d - disruption to work. Methods Women were eligible to take part in this study if they had been diagnosed and treated for either early or advanced breast cancer and if they had travelled from outside the metropolitan area to the treatment centre. Women who did not travel from outside the metropolitan area for treatment were not included in the survey (i.e. women who live within the metropolitan area who have access to treatment centres close to their place of residence). A sample of eligible women from major treatment centres in NSW and South Australia who met the study criteria (i.e. recently completed treatment and travelled for treatment) were sent a letter from a member of their treatment team describing the study and inviting them to participate in a telephone survey. Women were informed that participation was entirely voluntary, that they could withdraw at any time and that a decision not to participate or to withdraw from the study would have no influence on any medical treatment they may receive. Women indicated their willingness to participate in the study by returning a reply form indicating their contact details and the best time to be contacted. Reply forms were returned directly to the researchers to ensure that consent status was not known to their treatment centre. One hundred and forty three women were sent letters asking for their participation in the study, 38 women did not reply and eight responded ‘no’on the reply form.After excluding women who could not be contacted after five attempts (n=10), were ineligible (n=5) or deceased (n=2), a response rate of 63% was calculated. The brief, 15-minute telephone survey was conducted by trained interviewers and consisted of questions about social and practical support issues relating to treatment and the needs of rural women. In this context, social support refers to the emotional, psychological and friendly support provided to a woman by members of a local support group, a volunteer organisation such as the Breast Cancer Support Service or an equivalent group. Practical support refers to assistance with more tangible matters associated with being treated for breast cancer, such as provision of information and assistance with travel and accommodation, financial support and practical needs associated with the family and home; knowledge about and access to counselling and support services; and the needs of rural women. Results Participants included 80 women aged between 34 and 80 years (mean=57.03, SD=10.33) from rural NSW (50%)and South Australia (50%).The majority (82.5%)needed to stay away from home to get treatment for breast cancer, while 17.5% were able to travel to their treatment centre daily. More than 90% of women travelled for treatment due to a lack of available treatment centres closer to home and they spent an average of 6.79 weeks (SD=4.73) away from home. More than 80%of participants travelled for radiotherapy, with 55% of these women having travelled more than 200 km for treatment. Figure 1 shows the amount of assistance received by rural women travelling for treatment. Eighty per cent of women were told about cancer support services, with the majority being told by their doctor (33%) or nursing staff (22%). Seventy-six per cent of women used some type of support service, with 35% seeing a Breast Cancer Support Service volunteer and 16% participating in a support group. Although the majority of rural women reported receiving social support, only 39% of women received financial assistance and 19% of these women had trouble claiming money. Of the 48 women who did not receive financial assistance, 29% stated they were not aware it was available and 13% found the process too complicated. In addition, findings revealed that rural women travelling to the city for treatment reported experiencing a number of special problems (see Figure 2). Eighty-nine per cent of participants identified specific problems for rural women, with social and practical support being primary concerns; 76% needed more information about travel and accommodation assistance; 3 1% identified difficulties due to disruptions in family life; and 21% reported difficulties due to disruption with work. Discussion Women diagnosed with breast cancer should have equity in access to treatment options, regardless of geographic location.2The results of this study highlighted the considerable social and financial costs experienced by women living in rural or remote areas AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH 1998 VOL. 22 NO. 5 Needs of rural women with breast cancer when travelling for breast cancer treatment. The rural women in the current study spent an average of more than six weeks away from their families and home while undergoing breast cancer treatment. The focus of the current study is limited, in that the information was self-report, involved a small, non-random sample, and women who were unable or unwilling to travel for breast cancer treatment were not included in the sample. Furthermore, the women’s disease status was not known and it should be acknowledged that women with advanced disease are likely to have additional needs related to palliative care that were not addressed in this survey. Another limitation of this study was the absence of an urban control group and it is acknowledged that some of the needs identified for rural women may also apply to urban women. Despite these limitations, this study provides useful information on the needs of rural women travelling for treatment. Such information is required to assist with planning services to ensure equity in the treatment of all women diagnosed with breast cancer. There are a number of possible alternatives for ensuring equity in the treatment of breast cancer. One option is to increase treatment facilities and multi-diciplinary care centres in rural and remote areas. However, given the cost, this is not a very viable option in the near future. Rural clinicians are also likely to see fewer breast cancer patients than their urban counterparts. Increasing their involvement in breast cancer care outside their practice, through telemedicine for instance, may contribute to an improvement in quality of care for rural women. Until treatment for breast cancer is available for women close to home, alternative mechanisms for ensuring equity in health care must be implemented. Findings revealed that only a minority of these rural women received financial assistance for travel and accommodation, and many of these had difficulty claiming reimbursements. The government currently has schemes which offer such assistance; however, there is great variety in these assistance programs across states and temtones and they often fail to provide adequate support for women with breast cancer.” Hence, government assistance programs should be reviewed to ensure equity in access to assistance and in the amount of assistance provided. It is also important for these programs to be appropriately promoted to those who are eligible to access them. Some services are available to rural women being treated for breast cancer, such as the Breast Cancer Support Service. Despite these services, findings from this study reveal that although the majority of women are told about cancer support services and use some type of support service, many women still report difficulties with social and practical support, and disruption in family life and work. Some recommendations for improving the support given to rural women during treatment for breast cancer include rural or community breast care nurse to provide comprehensive information and follow-up care, access to tele-medicine links for women and their providers, and services to assist with the needs of family and work. Treating women close to home is often not possible, but it is possible to improve access to treatment by making it easier for women to be absent from their home, family and work during treatment. Equity in health care cannot be obtained until all women with breast cancer have the same treatment options regardless of geographic location. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Australian and New Zealand Journal of Public Health Wiley

Needs assessment of rural and remote women travelling to the city for breast cancer treatment

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References (17)

Publisher
Wiley
Copyright
Copyright © 1998 Wiley Subscription Services, Inc., A Wiley Company
ISSN
1326-0200
eISSN
1753-6405
DOI
10.1111/j.1467-842X.1998.tb01431.x
Publisher site
See Article on Publisher Site

Abstract

Abstract The purpose of this study was to assess the needs of rural women travelling to the city for breast cancer treatment. Participants included 80 women aged between 34 and 80 years living in rural NSW and South Australia who travelled for breast cancer treatment. After completing treatment, participants completed a brief telephone survey on the needs of rural women travelling for treatment. Findings Afaf Girgis New South Wales (CancerCouncil’s Cancer Education Research Program (CERP) Philippa Williams and Linda Beeney National Health and Medical Research Council, National Breast Cancer Centre, New South Wales reast cancer remains the most common cause of cancer deaths among women in Australia, accounting for 7,520 deaths in urban areas and 2,644 deaths in rural areas from 1991 to 1994.’ Furthermore, the incidence of breast cancer continues to increase at a rate of 1.5% per year with approximately 8,000 cases diagnosed each year.’ According to the: Australian Bureau of Statistics (1991 census figures), 47% of women aged 35 years and over reside in noncapital areas.2 Based on a number of clinical trial^,^-^ a consensus now exists that women with operable breast cancer can be treated with a mastectomy or breast-conserving surgery, in conjunction with adjuvant therapy, such as radiotherapy a n d o r chemotherapy.6 While research suggests that women who have undergone breast-conserving therapy have fewer problems with sexuality and body image than women who have had a mastectomy,’ overall psychological adjustment seems to be similar for the two groups.*.’ Fallowfield (1990) found that women who were offered a choice between breastconserving therapy and mastectomy showed less depression 12 months after surgery compared to women not offered a choice. However, it is unclear if this finding is due to the availability of choice or involvement in the decision-making process. l o Although breast-conserving therapy and mastectomy are equa1l:y effective in the treatment of early-stage breast cancer,lI research both overseas12 and i n , 4 ~ s t r a l i a ’ ~ - ’ ~ suggests that rural women are significantly more likely to undergo mastectomy compared to urban 1998 VOL. 22 NO. 5 women. This may be associated with the need for rural women undergoing breastconserving surgery to travel to an urban treatment centre for adjuvant therapy. The House of Representatives Standing Committee on Community Affairs Report on the Management and Treatment of Breast Cancer (1995) identified that women diagnosed with breast cancer living in rural and remote areas ofAustralia have special needs and may require special support when undergoing treatment for breast cancer.2 Women living in rural o r remote areas experience considerable social and financial costs when travelling for adjuvant therapy. It is the goal of the House of Representatives that every Australian woman faced with breast cancer, “regardless of where she lives and whatever her social and economical background, should have the very best treatment and support available”.* Submissions to government inquiries from rural women with breast cancer described the increased burden experienced by rural women and their families in travelling for treatment and the resulting lack of treatment choice.16 The purpose of the current study was to assess the needs of rural women travelling to the city for breast cancer treatment and recommend appropriate interventions to ensure equity in availability and access to breast cancer treatment for all women. In this context, the term ‘rural’ is used to describe an area of residence outside the metropolitan area in which the treatment centre is located (In most cases, this would be more than 100 kilometres from a treatment centre). revealed that more than 90% of women travelled for treatment due to the lack of available treatment centres closer to home and on average they spent 6.79 weeks (SD=4.73) away from their home and family. Findings also showed that 89% identified specific problems for rural women, with social and practical support being primary concerns. Although the majority of women were provided with some type of social support, only 39% of women received financial assistance and 19% of these women had trouble claiming money for which they were eligible. Recommendations of appropriate interventions to ensure equity in the availability and access to breast cancer treatment for all women are discussed. (AustNZJPublicHealth 1998;22:525-7) Correspondenceto: Dr Cindy Davis, NHMRC National Breast Cancer Centre, PO Box 572, Kings Cross, NSW 201 1. Fax: (02) 9326 9329; e-mail: cindyd @ nbcc.org.au AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH Davis et al. 10ofl ao Figure 1: Percentage of rural women receiving assistance when travelling for breast cancer treatment. Legend: a - received financial assistance; b - told about cancer support services; c - used support services; d - used a BCSS volunteer; e - used a support group. Figure 2: Percentage of rural women experiencing problems when travelling for breast cancer treatment. Legend: a - special problems (i.e. social and practical support, isolation); b - lack of information about travel assistance; c disruption to family life; d - disruption to work. Methods Women were eligible to take part in this study if they had been diagnosed and treated for either early or advanced breast cancer and if they had travelled from outside the metropolitan area to the treatment centre. Women who did not travel from outside the metropolitan area for treatment were not included in the survey (i.e. women who live within the metropolitan area who have access to treatment centres close to their place of residence). A sample of eligible women from major treatment centres in NSW and South Australia who met the study criteria (i.e. recently completed treatment and travelled for treatment) were sent a letter from a member of their treatment team describing the study and inviting them to participate in a telephone survey. Women were informed that participation was entirely voluntary, that they could withdraw at any time and that a decision not to participate or to withdraw from the study would have no influence on any medical treatment they may receive. Women indicated their willingness to participate in the study by returning a reply form indicating their contact details and the best time to be contacted. Reply forms were returned directly to the researchers to ensure that consent status was not known to their treatment centre. One hundred and forty three women were sent letters asking for their participation in the study, 38 women did not reply and eight responded ‘no’on the reply form.After excluding women who could not be contacted after five attempts (n=10), were ineligible (n=5) or deceased (n=2), a response rate of 63% was calculated. The brief, 15-minute telephone survey was conducted by trained interviewers and consisted of questions about social and practical support issues relating to treatment and the needs of rural women. In this context, social support refers to the emotional, psychological and friendly support provided to a woman by members of a local support group, a volunteer organisation such as the Breast Cancer Support Service or an equivalent group. Practical support refers to assistance with more tangible matters associated with being treated for breast cancer, such as provision of information and assistance with travel and accommodation, financial support and practical needs associated with the family and home; knowledge about and access to counselling and support services; and the needs of rural women. Results Participants included 80 women aged between 34 and 80 years (mean=57.03, SD=10.33) from rural NSW (50%)and South Australia (50%).The majority (82.5%)needed to stay away from home to get treatment for breast cancer, while 17.5% were able to travel to their treatment centre daily. More than 90% of women travelled for treatment due to a lack of available treatment centres closer to home and they spent an average of 6.79 weeks (SD=4.73) away from home. More than 80%of participants travelled for radiotherapy, with 55% of these women having travelled more than 200 km for treatment. Figure 1 shows the amount of assistance received by rural women travelling for treatment. Eighty per cent of women were told about cancer support services, with the majority being told by their doctor (33%) or nursing staff (22%). Seventy-six per cent of women used some type of support service, with 35% seeing a Breast Cancer Support Service volunteer and 16% participating in a support group. Although the majority of rural women reported receiving social support, only 39% of women received financial assistance and 19% of these women had trouble claiming money. Of the 48 women who did not receive financial assistance, 29% stated they were not aware it was available and 13% found the process too complicated. In addition, findings revealed that rural women travelling to the city for treatment reported experiencing a number of special problems (see Figure 2). Eighty-nine per cent of participants identified specific problems for rural women, with social and practical support being primary concerns; 76% needed more information about travel and accommodation assistance; 3 1% identified difficulties due to disruptions in family life; and 21% reported difficulties due to disruption with work. Discussion Women diagnosed with breast cancer should have equity in access to treatment options, regardless of geographic location.2The results of this study highlighted the considerable social and financial costs experienced by women living in rural or remote areas AUSTRALIAN AND NEW ZEALAND JOURNAL OF PUBLIC HEALTH 1998 VOL. 22 NO. 5 Needs of rural women with breast cancer when travelling for breast cancer treatment. The rural women in the current study spent an average of more than six weeks away from their families and home while undergoing breast cancer treatment. The focus of the current study is limited, in that the information was self-report, involved a small, non-random sample, and women who were unable or unwilling to travel for breast cancer treatment were not included in the sample. Furthermore, the women’s disease status was not known and it should be acknowledged that women with advanced disease are likely to have additional needs related to palliative care that were not addressed in this survey. Another limitation of this study was the absence of an urban control group and it is acknowledged that some of the needs identified for rural women may also apply to urban women. Despite these limitations, this study provides useful information on the needs of rural women travelling for treatment. Such information is required to assist with planning services to ensure equity in the treatment of all women diagnosed with breast cancer. There are a number of possible alternatives for ensuring equity in the treatment of breast cancer. One option is to increase treatment facilities and multi-diciplinary care centres in rural and remote areas. However, given the cost, this is not a very viable option in the near future. Rural clinicians are also likely to see fewer breast cancer patients than their urban counterparts. Increasing their involvement in breast cancer care outside their practice, through telemedicine for instance, may contribute to an improvement in quality of care for rural women. Until treatment for breast cancer is available for women close to home, alternative mechanisms for ensuring equity in health care must be implemented. Findings revealed that only a minority of these rural women received financial assistance for travel and accommodation, and many of these had difficulty claiming reimbursements. The government currently has schemes which offer such assistance; however, there is great variety in these assistance programs across states and temtones and they often fail to provide adequate support for women with breast cancer.” Hence, government assistance programs should be reviewed to ensure equity in access to assistance and in the amount of assistance provided. It is also important for these programs to be appropriately promoted to those who are eligible to access them. Some services are available to rural women being treated for breast cancer, such as the Breast Cancer Support Service. Despite these services, findings from this study reveal that although the majority of women are told about cancer support services and use some type of support service, many women still report difficulties with social and practical support, and disruption in family life and work. Some recommendations for improving the support given to rural women during treatment for breast cancer include rural or community breast care nurse to provide comprehensive information and follow-up care, access to tele-medicine links for women and their providers, and services to assist with the needs of family and work. Treating women close to home is often not possible, but it is possible to improve access to treatment by making it easier for women to be absent from their home, family and work during treatment. Equity in health care cannot be obtained until all women with breast cancer have the same treatment options regardless of geographic location.

Journal

Australian and New Zealand Journal of Public HealthWiley

Published: Oct 1, 1998

There are no references for this article.