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Published in: Supportive Care in Cancer 3/2017

01-03-2017 | Original Article

Unmet supportive care needs of Australian Aboriginal and Torres Strait Islanders with cancer: a prospective, longitudinal study

Authors: Patricia C Valery, Christina M Bernardes, Vanessa Beesley, Anna L Hawkes, Peter Baade, Gail Garvey

Published in: Supportive Care in Cancer | Issue 3/2017

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Abstract

Purpose

The purposes of the present study are to describe changes over time in the prevalence of unmet supportive care needs of Indigenous Australians newly diagnosed with cancer and to identify factors associated with greater needs at diagnosis.

Methods

Unmet needs were assessed by the Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) within 3 months and at 6 months post-diagnosis. Overall needs and specific need domains were modelled using generalized estimating equations. Associations between risk factors and moderate-high unmet needs at diagnosis were assessed using multivariable logistic regression analyses.

Results

Over half (54%) of the participants (n = 82) experienced at least one moderate-high unmet need at diagnosis which reduced to 34% at 6 months post-diagnosis. This improvement mainly reflected the decrease in needs from the physical/psychological domain (p = 0.042). The median overall unmet need score and most domain scores were significantly lower at 6 months. Eighteen percent experienced multiple (5+) moderate-high unmet needs at diagnosis (60% continued to report needs at 6 months). The top unmet needs at diagnosis were money worries (27%), concerns about the worries of those close to you (16%) and worry about your illness spreading/getting worse (15%). Having a higher education and having received cancer treatment in the last 30 days were significantly associated with greater needs at diagnosis.

Conclusions

While unmet needs decreased over time, some patients continued to experience moderate-high unmet needs. This study indicates that needs should be monitored throughout the patient’s journey. Coordination of support, particularly for those with multiple needs, may be important for this group.
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Literature
1.
go back to reference Ali NS, Khalil HZ, Yousef W (1993) A comparison of American and Egyptian cancer patients’ attitudes and unmet needs. Cancer Nurs 16:193–203CrossRefPubMed Ali NS, Khalil HZ, Yousef W (1993) A comparison of American and Egyptian cancer patients’ attitudes and unmet needs. Cancer Nurs 16:193–203CrossRefPubMed
2.
go back to reference Hubbard G, Venning C, Walker A, Scanlon K, Kyle RG (2015) Supportive care needs of women with breast cancer in rural. Scotland Support Care Cancer 23:1523–1532CrossRefPubMed Hubbard G, Venning C, Walker A, Scanlon K, Kyle RG (2015) Supportive care needs of women with breast cancer in rural. Scotland Support Care Cancer 23:1523–1532CrossRefPubMed
3.
go back to reference Lam WW, Tsang J, Yeo W, Suen J, Ho WM, Yau TK, Soong I, Wong KY, Kwong A, Suen D, Sze WK, Ng AW, Girgis A, Fielding R (2014) The evolution of supportive care needs trajectories in women with advanced breast cancer during the 12 months following diagnosis. Support Care Cancer 22:635–644CrossRefPubMed Lam WW, Tsang J, Yeo W, Suen J, Ho WM, Yau TK, Soong I, Wong KY, Kwong A, Suen D, Sze WK, Ng AW, Girgis A, Fielding R (2014) The evolution of supportive care needs trajectories in women with advanced breast cancer during the 12 months following diagnosis. Support Care Cancer 22:635–644CrossRefPubMed
4.
go back to reference Australian Institute of Health and Welfare (2014) Cancer in Australia: an overview 2014. AIHW, Canberra Australian Institute of Health and Welfare (2014) Cancer in Australia: an overview 2014. AIHW, Canberra
5.
go back to reference Garvey G, Beesley VL, Janda M, O’Rourke P, C. H, A. H, J. E, Green AC, J. C, Valery PC (2015) Psychometric properties of an Australian Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) with cancer. Cancer 121:3018–3026CrossRefPubMed Garvey G, Beesley VL, Janda M, O’Rourke P, C. H, A. H, J. E, Green AC, J. C, Valery PC (2015) Psychometric properties of an Australian Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) with cancer. Cancer 121:3018–3026CrossRefPubMed
6.
go back to reference Australian Institute of Health and Welfare, Cancer Australia (2013) Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. AIHW, Canberra Australian Institute of Health and Welfare, Cancer Australia (2013) Cancer in Aboriginal and Torres Strait Islander peoples of Australia: an overview. AIHW, Canberra
7.
go back to reference Condon JR, Barnes T, Cunningham J, Armstrong BK (2004) Long-term trends in cancer mortality for indigenous Australians in the Northern Territory. Med J Aust 180:504–507PubMed Condon JR, Barnes T, Cunningham J, Armstrong BK (2004) Long-term trends in cancer mortality for indigenous Australians in the Northern Territory. Med J Aust 180:504–507PubMed
8.
go back to reference Valery PC, Coory M, Stirling J, Green AC (2006) Cancer diagnosis, treatment, and survival in indigenous and non-indigenous Australians: a matched cohort study. Lancet 367:1842–1848CrossRefPubMed Valery PC, Coory M, Stirling J, Green AC (2006) Cancer diagnosis, treatment, and survival in indigenous and non-indigenous Australians: a matched cohort study. Lancet 367:1842–1848CrossRefPubMed
9.
go back to reference Moore SP, Green AC, Bray F, Garvey G, Coory M, Martin J, Valery PC (2014) Survival disparities in Australia: an analysis of patterns of care and comorbidities among indigenous and non-indigenous cancer patients. BMC Cancer 14:517CrossRefPubMedPubMedCentral Moore SP, Green AC, Bray F, Garvey G, Coory M, Martin J, Valery PC (2014) Survival disparities in Australia: an analysis of patterns of care and comorbidities among indigenous and non-indigenous cancer patients. BMC Cancer 14:517CrossRefPubMedPubMedCentral
10.
go back to reference Zucca A, Boyes A, Newling G, Hall A, Girgis A (2011) Travelling all over the countryside: travel-related burden and financial difficulties reported by cancer patients in New South Wales and Victoria. Aust J Rural Health 19:298–305CrossRefPubMed Zucca A, Boyes A, Newling G, Hall A, Girgis A (2011) Travelling all over the countryside: travel-related burden and financial difficulties reported by cancer patients in New South Wales and Victoria. Aust J Rural Health 19:298–305CrossRefPubMed
11.
go back to reference McGrath P (1999) Accommodation for patients and carers during relocation for treatment for leukaemia: a descriptive profile. Support Care Cancer 7:6–10CrossRefPubMed McGrath P (1999) Accommodation for patients and carers during relocation for treatment for leukaemia: a descriptive profile. Support Care Cancer 7:6–10CrossRefPubMed
12.
go back to reference Baade PD, Dasgupta P, Aitken JF, Turrell G (2013) Geographic remoteness, area-level socioeconomic disadvantage and inequalities in colorectal cancer survival in Queensland: a multilevel analysis. BMC Cancer 13:493CrossRefPubMedPubMedCentral Baade PD, Dasgupta P, Aitken JF, Turrell G (2013) Geographic remoteness, area-level socioeconomic disadvantage and inequalities in colorectal cancer survival in Queensland: a multilevel analysis. BMC Cancer 13:493CrossRefPubMedPubMedCentral
13.
go back to reference McGrath P, Patterson C, Yates P, Treloar S, Oldenburg B, Loos C (1999) A study of postdiagnosis breast cancer concerns for women living in rural and remote Queensland. Part II: Support Issues Aust J Rural Health 7:43–52PubMed McGrath P, Patterson C, Yates P, Treloar S, Oldenburg B, Loos C (1999) A study of postdiagnosis breast cancer concerns for women living in rural and remote Queensland. Part II: Support Issues Aust J Rural Health 7:43–52PubMed
14.
go back to reference Hegney D, Pearce S, Rogers-Clark C, Martin-McDonald K, Buikstra E (2005) Close, but still too far. The experience of Australian people with cancer commuting from a regional to a capital city for radiotherapy treatment. Eur J Cancer Care (Engl) 14:75–82CrossRef Hegney D, Pearce S, Rogers-Clark C, Martin-McDonald K, Buikstra E (2005) Close, but still too far. The experience of Australian people with cancer commuting from a regional to a capital city for radiotherapy treatment. Eur J Cancer Care (Engl) 14:75–82CrossRef
15.
go back to reference Australian Institute of Health and Welfare (2015) The health and welfare of Aboriginal and Torres Strait Islander peoples. ABS, Canberra Australian Institute of Health and Welfare (2015) The health and welfare of Aboriginal and Torres Strait Islander peoples. ABS, Canberra
16.
go back to reference Shahid S, Finn L, Bessarab D, Thompson SC (2011) ‘Nowhere to room ... nobody told them’: logistical and cultural impediments to Aboriginal peoples’ participation in cancer treatment. Aust Health Rev 35:235–241CrossRefPubMed Shahid S, Finn L, Bessarab D, Thompson SC (2011) ‘Nowhere to room ... nobody told them’: logistical and cultural impediments to Aboriginal peoples’ participation in cancer treatment. Aust Health Rev 35:235–241CrossRefPubMed
17.
go back to reference Australian Institute of Health and Welfare (2004) Rural, regional and remote health: a guide to remoteness classifications. AIHW, Canberra Australian Institute of Health and Welfare (2004) Rural, regional and remote health: a guide to remoteness classifications. AIHW, Canberra
18.
go back to reference Australian Bureau of Statistics (2008) Census of population and housing: socio-economic indexes for areas (SEIFA), Australia, 2006. ABS, Canberra Australian Bureau of Statistics (2008) Census of population and housing: socio-economic indexes for areas (SEIFA), Australia, 2006. ABS, Canberra
19.
go back to reference Diaz A, Bernardes CM, Garvey G, Valery PC (2016) Supportive care needs among indigenous cancer patients in Queensland, Australia: less comorbidity is associated with greater practical and cultural unmet need. Eur J Cancer Care (Engl) 25:242–253CrossRef Diaz A, Bernardes CM, Garvey G, Valery PC (2016) Supportive care needs among indigenous cancer patients in Queensland, Australia: less comorbidity is associated with greater practical and cultural unmet need. Eur J Cancer Care (Engl) 25:242–253CrossRef
20.
go back to reference Barg FK, Cronholm PF, Straton JB, Keddem S, Knott K, Grater J, Houts P, Palmer SC (2007) Unmet psychosocial needs of Pennsylvanians with cancer: 1986–2005. Cancer 110:631–639CrossRefPubMed Barg FK, Cronholm PF, Straton JB, Keddem S, Knott K, Grater J, Houts P, Palmer SC (2007) Unmet psychosocial needs of Pennsylvanians with cancer: 1986–2005. Cancer 110:631–639CrossRefPubMed
21.
go back to reference Beesley V, Eakin E, Steginga S, Aitken J, Dunn J, Battistutta D (2008) Unmet needs of gynaecological cancer survivors: implications for developing community support services. Psychooncol 17:392–400CrossRef Beesley V, Eakin E, Steginga S, Aitken J, Dunn J, Battistutta D (2008) Unmet needs of gynaecological cancer survivors: implications for developing community support services. Psychooncol 17:392–400CrossRef
22.
go back to reference Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Support Care Rev Group Cancer 88:226 Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P (2000) The unmet supportive care needs of patients with cancer. Support Care Rev Group Cancer 88:226
23.
go back to reference Hall AE, Sanson-Fisher RW, Lynagh MC, Tzelepis F, D’Este C (2015) What do haematological cancer survivors want help with? A cross-sectional investigation of unmet supportive care needs. BMC Res Notes 8:221CrossRefPubMedPubMedCentral Hall AE, Sanson-Fisher RW, Lynagh MC, Tzelepis F, D’Este C (2015) What do haematological cancer survivors want help with? A cross-sectional investigation of unmet supportive care needs. BMC Res Notes 8:221CrossRefPubMedPubMedCentral
24.
go back to reference Hall A, D’Este C, Tzelepis F, Lynagh M, Sanson-Fisher R (2014) Factors associated with haematological cancer survivors experiencing a high level of unmet need across multiple items of supportive care: a cross-sectional survey study. Support Care Cancer 22:2899–2909CrossRefPubMed Hall A, D’Este C, Tzelepis F, Lynagh M, Sanson-Fisher R (2014) Factors associated with haematological cancer survivors experiencing a high level of unmet need across multiple items of supportive care: a cross-sectional survey study. Support Care Cancer 22:2899–2909CrossRefPubMed
25.
go back to reference White KJ, Roydhouse JK, D’Abrew NK, Katris P, O’Connor M, Emery L (2011) Unmet psychological and practical needs of patients with cancer in rural and remote areas of Western Australia. Rural Remote Health 11:1784PubMed White KJ, Roydhouse JK, D’Abrew NK, Katris P, O’Connor M, Emery L (2011) Unmet psychological and practical needs of patients with cancer in rural and remote areas of Western Australia. Rural Remote Health 11:1784PubMed
26.
go back to reference Bennett JA, Brown P, Cameron L, Whitehead LC, Porter D, McPherson KM (2009) Changes in employment and household income during the 24 months following a cancer diagnosis. Support Care Cancer 17:1057–1064CrossRefPubMed Bennett JA, Brown P, Cameron L, Whitehead LC, Porter D, McPherson KM (2009) Changes in employment and household income during the 24 months following a cancer diagnosis. Support Care Cancer 17:1057–1064CrossRefPubMed
27.
go back to reference McGrath C, Mihala G, Beesley VL, Lynch BM, Graves N, Gordon LG (2016) “Cancer put my life on hold”: work-related challenges among middle-aged adults 12 months after a diagnosis of colorectal cancer Cancer Nurs McGrath C, Mihala G, Beesley VL, Lynch BM, Graves N, Gordon LG (2016) “Cancer put my life on hold”: work-related challenges among middle-aged adults 12 months after a diagnosis of colorectal cancer Cancer Nurs
28.
go back to reference Liao MN, Chen SC, Chen SC, Lin YC, Hsu YH, Hung HC, Wang CH, Chen MF, Jane SW (2012) Changes and predictors of unmet supportive care needs in Taiwanese women with newly diagnosed breast cancer. Oncol Nurs Forum 39:E380–E389CrossRefPubMed Liao MN, Chen SC, Chen SC, Lin YC, Hsu YH, Hung HC, Wang CH, Chen MF, Jane SW (2012) Changes and predictors of unmet supportive care needs in Taiwanese women with newly diagnosed breast cancer. Oncol Nurs Forum 39:E380–E389CrossRefPubMed
29.
go back to reference Schmid-Buchi S, Halfens RJ, Muller M, Dassen T, den Borne B v (2013) Factors associated with supportive care needs of patients under treatment for breast cancer. Eur J Oncol Nurs 17:22–29CrossRefPubMed Schmid-Buchi S, Halfens RJ, Muller M, Dassen T, den Borne B v (2013) Factors associated with supportive care needs of patients under treatment for breast cancer. Eur J Oncol Nurs 17:22–29CrossRefPubMed
30.
go back to reference Lam WW, Au AH, Wong JH, Lehmann C, Koch U, Fielding R, Mehnert A (2011) Unmet supportive care needs: a cross-cultural comparison between Hong Kong Chinese and German Caucasian women with breast cancer. Breast Cancer Res Treat 130:531–541CrossRefPubMed Lam WW, Au AH, Wong JH, Lehmann C, Koch U, Fielding R, Mehnert A (2011) Unmet supportive care needs: a cross-cultural comparison between Hong Kong Chinese and German Caucasian women with breast cancer. Breast Cancer Res Treat 130:531–541CrossRefPubMed
31.
go back to reference Kim SH, Lee S, Kim SH, Ok ON, Kim IR, Choi E, Kang YK, Kim SJ, Lee MH (2016) Unmet needs of non-Hodgkin lymphoma survivors in Korea: prevalence, correlates, and associations with health-related quality of life. Psychooncol Kim SH, Lee S, Kim SH, Ok ON, Kim IR, Choi E, Kang YK, Kim SJ, Lee MH (2016) Unmet needs of non-Hodgkin lymphoma survivors in Korea: prevalence, correlates, and associations with health-related quality of life. Psychooncol
33.
go back to reference Hill S, Sarfati D, Blakely T, Robson B, Purdie G, Chen J, Dennett E, Cormack D, Cunningham R, Dew K, McCreanor T, Kawachi I (2010) Survival disparities in indigenous and non-indigenous New Zealanders with colon cancer: the role of patient comorbidity, treatment and health service factors. J Epidemiol Community Health 64:117–123CrossRefPubMed Hill S, Sarfati D, Blakely T, Robson B, Purdie G, Chen J, Dennett E, Cormack D, Cunningham R, Dew K, McCreanor T, Kawachi I (2010) Survival disparities in indigenous and non-indigenous New Zealanders with colon cancer: the role of patient comorbidity, treatment and health service factors. J Epidemiol Community Health 64:117–123CrossRefPubMed
34.
go back to reference Jorgensen ML, Young JM, Harrison JD, Solomon MJ (2012) Unmet supportive care needs in colorectal cancer: differences by age. Support Care Cancer 20:1275–1281CrossRefPubMed Jorgensen ML, Young JM, Harrison JD, Solomon MJ (2012) Unmet supportive care needs in colorectal cancer: differences by age. Support Care Cancer 20:1275–1281CrossRefPubMed
35.
go back to reference Beesley VL, Price MA, Webb PM, O’Rourke P, Marquart L, Australian Ovarian Cancer Study G, Australian Ovarian Cancer Study-Quality of Life Study I, Butow PN (2013) Changes in supportive care needs after first-line treatment for ovarian cancer: identifying care priorities and risk factors for future unmet needs. Psychooncol 22:1565–1571CrossRef Beesley VL, Price MA, Webb PM, O’Rourke P, Marquart L, Australian Ovarian Cancer Study G, Australian Ovarian Cancer Study-Quality of Life Study I, Butow PN (2013) Changes in supportive care needs after first-line treatment for ovarian cancer: identifying care priorities and risk factors for future unmet needs. Psychooncol 22:1565–1571CrossRef
36.
go back to reference Minstrell M, Winzenberg T, Rankin N, Hughes C, Walker J (2008) Supportive care of rural women with breast cancer in Tasmania, Australia: changing needs over time. Psychooncol 17:58–65CrossRef Minstrell M, Winzenberg T, Rankin N, Hughes C, Walker J (2008) Supportive care of rural women with breast cancer in Tasmania, Australia: changing needs over time. Psychooncol 17:58–65CrossRef
37.
go back to reference McDowell ME, Occhipinti S, Ferguson M, Dunn J, Chambers SK (2010) Predictors of change in unmet supportive care needs in cancer. Psychooncol 19:508–516CrossRef McDowell ME, Occhipinti S, Ferguson M, Dunn J, Chambers SK (2010) Predictors of change in unmet supportive care needs in cancer. Psychooncol 19:508–516CrossRef
38.
go back to reference Langbecker D, Yates P (2016) Primary brain tumor patients’ supportive care needs and multidisciplinary rehabilitation, community and psychosocial support services: awareness, referral and utilization. J Neuro-Oncol 127:91–102CrossRef Langbecker D, Yates P (2016) Primary brain tumor patients’ supportive care needs and multidisciplinary rehabilitation, community and psychosocial support services: awareness, referral and utilization. J Neuro-Oncol 127:91–102CrossRef
39.
go back to reference Carlson LE, Waller A, Mitchell AJ (2012) Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol 30:1160–1177CrossRefPubMed Carlson LE, Waller A, Mitchell AJ (2012) Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol 30:1160–1177CrossRefPubMed
40.
go back to reference Boyes AW, Girgis A, D’Este C, Zucca AC (2012) Prevalence and correlates of cancer survivors’ supportive care needs 6 months after diagnosis: a population-based cross-sectional study. BMC Cancer 12:150CrossRefPubMedPubMedCentral Boyes AW, Girgis A, D’Este C, Zucca AC (2012) Prevalence and correlates of cancer survivors’ supportive care needs 6 months after diagnosis: a population-based cross-sectional study. BMC Cancer 12:150CrossRefPubMedPubMedCentral
41.
go back to reference Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, Palmer N, Ream E, Young A, Richardson A (2009) Patients’ supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. J Clin Oncol 27:6172–6179CrossRefPubMed Armes J, Crowe M, Colbourne L, Morgan H, Murrells T, Oakley C, Palmer N, Ream E, Young A, Richardson A (2009) Patients’ supportive care needs beyond the end of cancer treatment: a prospective, longitudinal survey. J Clin Oncol 27:6172–6179CrossRefPubMed
42.
go back to reference Sinding C, Warren R, Fitzpatrick-Lewis D, Sussman J (2014) Research in cancer care disparities in countries with universal healthcare: mapping the field and its conceptual contours. Support Care Cancer 22:3101–3120CrossRefPubMed Sinding C, Warren R, Fitzpatrick-Lewis D, Sussman J (2014) Research in cancer care disparities in countries with universal healthcare: mapping the field and its conceptual contours. Support Care Cancer 22:3101–3120CrossRefPubMed
43.
go back to reference Sawchuk CN, Van Dyke E, Omidpanah A, Russo JE, Tsosie U, Buchwald D (2015) Caregiving among American Indians and Alaska Natives with cancer. Support Care Cancer 23:1607–1614CrossRefPubMed Sawchuk CN, Van Dyke E, Omidpanah A, Russo JE, Tsosie U, Buchwald D (2015) Caregiving among American Indians and Alaska Natives with cancer. Support Care Cancer 23:1607–1614CrossRefPubMed
44.
go back to reference Whop LJ, Garvey G, Lokuge K, Mallitt KA, Valery PC (2012) Cancer support services—are they appropriate and accessible for indigenous cancer patients in Queensland, Australia? Rural Remote Health 12:2018PubMed Whop LJ, Garvey G, Lokuge K, Mallitt KA, Valery PC (2012) Cancer support services—are they appropriate and accessible for indigenous cancer patients in Queensland, Australia? Rural Remote Health 12:2018PubMed
45.
go back to reference Shahid S, Finn LD, Thompson SC (2009) Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting. Med J Aust 190:574–579PubMed Shahid S, Finn LD, Thompson SC (2009) Barriers to participation of Aboriginal people in cancer care: communication in the hospital setting. Med J Aust 190:574–579PubMed
Metadata
Title
Unmet supportive care needs of Australian Aboriginal and Torres Strait Islanders with cancer: a prospective, longitudinal study
Authors
Patricia C Valery
Christina M Bernardes
Vanessa Beesley
Anna L Hawkes
Peter Baade
Gail Garvey
Publication date
01-03-2017
Publisher
Springer Berlin Heidelberg
Published in
Supportive Care in Cancer / Issue 3/2017
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI
https://doi.org/10.1007/s00520-016-3475-9

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