Advertisement

Annals of Hematology

, Volume 97, Issue 7, pp 1283–1292 | Cite as

Unmet supportive care needs of haematological cancer survivors: rural versus urban residents

  • Flora TzelepisEmail author
  • Christine L. Paul
  • Robert W. Sanson-Fisher
  • H. Sharon Campbell
  • Kenneth Bradstock
  • Mariko L. Carey
  • Anna Williamson
Original Article

Abstract

Due to fewer cancer services in rural locations, rural survivors may have unique unmet needs compared to urban survivors. This study compared among rural and urban haematological cancer survivors the most common “high/very high” unmet supportive care needs and the unmet need scores for five domains (information, financial concerns, access and continuity of care, relationships and emotional health). Survivors’ socio-demographics, rurality, cancer history and psychological factors associated with each unmet need domain were also explored. A total of 1511 haematological cancer survivors were recruited from five Australian state cancer registries and 1417 (1145 urban, 272 rural) allowed extraction of their residential postcode from registry records. A questionnaire that contained the Survivor Unmet Needs Survey was mailed to survivors. Dealing with feeling tired was the most common “high/very high” unmet need for rural (15.2%) and urban (15.5%) survivors. The emotional health domain had the highest mean unmet need score for rural and urban survivors. Rurality was associated with a decreased unmet emotional health domain score whereas travelling for more than 1 h to treatment was associated with increased unmet financial concerns and unmet access and continuity of care. Depression, anxiety and stress were associated with increased unmet need scores for all five domains. Unmet need domain scores generally did not differ by rurality. Travelling for more than 1 h to treatment was associated with increased unmet need scores on two domains. Telemedicine and increased financial assistance with travel and accommodation may help those travelling long distances for treatment.

Keywords

Haematological cancer Rural Supportive care Unmet needs Urban 

Notes

Acknowledgements

The authors are grateful to the cancer registry staff for assistance with case recruitment; Ms. Sandra Dowley and Miss Clara Davis for data entry; Miss Ally Logatchova, Dr. Emilie Cameron, Miss Hannah Small and Miss Lara Ryan for assistance with data cleaning; and Joseph Hanna and Christopher Oldmeadow for statistical support.

Funding

This work was supported by a grant awarded through the Priority-driven Collaborative Cancer Research Scheme and co-funded by beyond blue and the Australian Government through Cancer Australia (No. 569290). The University of Newcastle and Hunter Medical Research Institute provided infrastructure support. FT was supported by a Leukaemia Foundation of Australia and Cure Cancer Australia Foundation Post-Doctoral Research Fellowship. CLP was supported by an HMRI Fellowship and an NHMRC Career Development Fellowship. MLC is supported by a NHMRC TRIP Fellowship.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

References

  1. 1.
    International Agency for Research on Cancer - World Health Organization (2015) GLOBOCAN 2012: estimated cancer incidence, mortality and prevalence worldwide in 2012. World Health Organization, GenevaGoogle Scholar
  2. 2.
    National Institute for Clinical Excellence (2003) Improving outcomes in haematological cancers. National Institute for Clinical Excellence, LondonGoogle Scholar
  3. 3.
    Twombly R (2004) What’s in a name: who is a cancer survivor? J Natl Cancer Inst 96:1414–1415CrossRefPubMedGoogle Scholar
  4. 4.
    National Cancer Institute (2018) NCI dictionary of cancer terms. National Cancer Institute, National Institutes of Health [Accessed 3 February 2018 from https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivor]
  5. 5.
    Australian Institute of Health and Welfare (2010) Cancer in Australia 2010: an overview. Australian Institute of Health and Welfare, CanberraGoogle Scholar
  6. 6.
    Allart-Vorelli P, Porro B, Baguet F, Michel A, Cousson-Gelie F (2015) Haematological cancer and quality of life: a systematic literature review. Blood Cancer J 5:e305CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Fitch MI (2008) Supportive care framework. Can Oncol Nurs J 18:6–24CrossRefPubMedGoogle Scholar
  8. 8.
    Swash B, Hulbert-Williams N, Bramwell R (2014) Unmet psychosocial needs in haematological cancer: a systematic review. Support Care Cancer 22:1131–1141CrossRefPubMedGoogle Scholar
  9. 9.
    Hall A, Lynagh M, Bryant J, Sanson-Fisher R (2013) Supportive care needs of hematological cancer survivors: a critical review of the literature. Crit Rev Oncol Hematol 88:102–116CrossRefPubMedGoogle Scholar
  10. 10.
    Lobb EA, Joske D, Butow P, Kristjanson LJ, Cannell P, Cull G, Augustson B (2009) When the safety net of treatment has been removed: patients’ unmet needs at the completion of treatment for haematological malignancies. Patient Educ Couns 77:103–108CrossRefPubMedGoogle Scholar
  11. 11.
    Molassiotis A, Wilson B, Blair S, Howe T, Cavet J (2011) Unmet supportive care needs, psychological well-being and quality of life in patients living with multiple myeloma and their partners. Psycho-Oncology 20:88–97CrossRefPubMedGoogle Scholar
  12. 12.
    Hall A, Campbell HS, Sanson-Fisher R, Lynagh M, D'Este C, Burkhalter R, Carey M (2013) Unmet needs of Australian and Canadian haematological cancer survivors: a cross-sectional international comparative study. Psycho-Oncology 22:2032–2038CrossRefPubMedGoogle Scholar
  13. 13.
    Boyes AW, Clinton-McHarg T, Waller AE, Steele A, D’Este CA, Sanson-Fisher RW (2015) Prevalence and correlates of the unmet supportive care needs of individuals diagnosed with a haematological malignancy. Acta Oncol 54:507–514CrossRefPubMedGoogle Scholar
  14. 14.
    Butow PN, Phillips F, Schweder J, White K, Underhill C, Goldstein D et al (2012) Psychosocial well-being and supportive care needs of cancer patients living in urban and rural/regional areas: a systematic review. Support Care Cancer 20:1–22CrossRefPubMedGoogle Scholar
  15. 15.
    Lawler S, Spathonis K, Masters J, Adams J, Eakin E (2011) Follow-up care after breast cancer treatment: experiences and perceptions of service provision and provider interactions in rural Australian women. Support Care Cancer 19:1975–1982CrossRefPubMedGoogle Scholar
  16. 16.
    Girgis A, Boyes A, Sanson-Fisher RW, Burrows S (2000) Perceived needs of women diagnosed with breast cancer: rural versus urban location. Aust N Z J Public Health 24:166–173CrossRefPubMedGoogle Scholar
  17. 17.
    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. Psycho-Oncology 17:392–400CrossRefPubMedGoogle Scholar
  18. 18.
    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 11:1784PubMedGoogle Scholar
  19. 19.
    Campbell HS, Sanson-Fisher R, Turner D, Hayward L, Wang XS, Taylor-Brown J (2010) Psychometric properties of cancer survivors’ unmet needs survey. Support Care Cancer 19:221–230CrossRefPubMedGoogle Scholar
  20. 20.
    Hall A, D'Este C, Tzelepis F, Sanson-Fisher R, Lynagh M (2014) The Survivor Unmet Needs Survey (SUNS) for haematological cancer survivors: a cross-sectional study assessing the relevance and psychometric properties. BMC Health Serv Res 14:211CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Australian Bureau of Statistics (2003) Australian standard geographical classification: purpose and use. Australian Bureau of Statistics, CanberraGoogle Scholar
  22. 22.
    Antony MM, Cox BJ, Enns MW, Bieling PJ, Swinson RP (1998) Psychometric properties of the 42-item and 21-item versions of the Depression Anxiety Stress Scales in clinical groups and a community sample. Psychol Assess 10:176–181CrossRefGoogle Scholar
  23. 23.
    Lovibond SH & Lovibond PF (1995) Manual for the depression anxiety & stress scales. (2nd Ed.) Psychology Foundation, SydneyGoogle Scholar
  24. 24.
    The University of Adelaide (2018) ARIA+ 2011 Australia. The University of Adelaide, Adelaide [Accessed on 3 February 2018 from http://www.spatialonline.com.au/ARIA_2011/]
  25. 25.
    McMillan EM, Newhouse IJ (2011) Exercise is an effective treatment modality for reducing cancer-related fatigue and improving physical capacity in cancer patients and survivors: a meta-analysis. Appl Physiol Nutr Metab 36:892–903CrossRefPubMedGoogle Scholar
  26. 26.
    Olson RA, Howard F, Turnbull K, Munroe D, Zirul C, Manji R et al (2014) Prospective evaluation of unmet needs of rural and Aboriginal cancer survivors in Northern British Columbia. Curr Oncol 21:e179–e185Google Scholar
  27. 27.
    Schlegel RJ, Talley AE, Molix LA, Bettencourt BA (2009) Rural breast cancer patients, coping and depressive symptoms: a prospective comparison study. Psychol Health 24:933–948CrossRefPubMedGoogle Scholar
  28. 28.
    Bettencourt BA, Talley AE, Molix L, Schlegel R, Westgate SJ (2008) Rural and urban breast cancer patients: health locus of control and psychological adjustment. Psycho-Oncology 17:932–939CrossRefPubMedGoogle Scholar
  29. 29.
    Sabesan S, Larkins S, Evans R, Varma S, Andrews A, Beuttner P, Brennan S, Young M (2012) Telemedicine for rural cancer care in North Queensland: bringing cancer care home. Aust J Rural Health 20:259–264CrossRefPubMedGoogle Scholar
  30. 30.
    Paul C, Boyes A, Hall A, Bisquera A, Miller A, O'Brien L (2016) The impact of cancer diagnosis and treatment on employment, income, treatment decisions and financial assistance and their relationship to socioeconomic and disease factors. Support Care Cancer 24:4739–4746CrossRefPubMedGoogle Scholar
  31. 31.
    Schmid-Buchi S, Halfens RJG, Muller M, Dassen T, van den Borne B (2013) Factors associated with supportive care needs of patients under treatment for breast cancer. Eur J Oncol Nurs 17:22–29CrossRefPubMedGoogle Scholar
  32. 32.
    Urbaniec OA, Collins K, Denson LA, Whitford HS (2011) Gynecological cancer survivors: assessment of psychological distress and unmet supportive care needs. J Psychosoc Oncol 29:534–551CrossRefPubMedGoogle Scholar
  33. 33.
    Parry C, Lomax JB, Morningstar EA, Fairclough DL (2012) Identification and correlates of unmet service needs in adult leukemia and lymphoma survivors after treatment. J Oncol Pract 8:e135–e141CrossRefPubMedPubMedCentralGoogle Scholar
  34. 34.
    Jorgensen ML, Young JM, Harrison JD, Solomon MJ (2012) Unmet supportive care needs in colorectal cancer: differences by age. Support Care Cancer 20:1275–1281CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Priority Research Centre for Health BehaviourUniversity of Newcastle and Hunter Medical Research InstituteCallaghanAustralia
  2. 2.Propel Centre for Population Health ImpactUniversity of WaterlooWaterlooCanada
  3. 3.Sydney Medical School, WestmeadUniversity of SydneySydneyAustralia
  4. 4.Leukaemia Foundation of AustraliaBrisbaneAustralia

Personalised recommendations