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What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses

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Abstract

Purpose

Many haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision.

Methods

Open text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n = 136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes.

Results

This study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified: the first relating to the challenges nurses face in providing care (‘care challenges’) and the second relating to the challenges of providing survivorship care within contemporary health care systems (‘system challenges’).

Conclusions

Cancer nurses perceive the nature of haematological cancer and its treatment and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not.

Implications for cancer survivors

Addressing the issues identified will facilitate cancer nurses’ provision of survivorship care and help address haematological survivors’ needs with regard to the physical and psychosocial consequences of their cancer and treatment.

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References

  1. Pallister C, Watson M. Haematology. 2nd ed. Banbury: Scion Publishing Limited; 2011.

    Google Scholar 

  2. Ferlay J, Shin HR, Bray F, Forman D, Mathers C, Parkin DM. Estimates of worldwide burden of cancer in 2008: GLOBOCAN 2008. Int J Cancer J Int du cancer. 2010;127(12):2893–917. doi:10.1002/ijc.25516.

    Article  CAS  Google Scholar 

  3. Rodriguez-Abreu D, Bordoni A, Zucca E. Epidemiology of hematological malignancies. Annals Oncol : Off J European Soc Med Oncol / ESMO. 2007;18 Suppl 1:i3–8. doi:10.1093/annonc/mdl443.

    Article  Google Scholar 

  4. Austrailan Institute of Health and Welfare. Cancer in Australia: an overview. In: Welfare AIoHa, editor. Canberra2012.

  5. Hamilton A, Gallipoli P, Nicholson E, Holyoake TL. Targeted therapy in haematological malignancies. J Pathol. 2010;220(4):404–18. doi:10.1002/path.2669.

    PubMed  CAS  Google Scholar 

  6. NICE. Improving outcomes in haematological cancers. The manual. London: National Institute for Clinical Excellence; 2003.

  7. Lobb EA, Joske D, Butow P, Kristjanson LJ, Cannell P, Cull G, et al. When the safety net of treatment has been removed: Patients' unmet needs at the completion of treatment for haematological malignancies. Patient Educ Couns. 2009;71:103–8. doi:10.1016/j.pec.2009.02.005.

    Article  Google Scholar 

  8. National Cancer Institute. NCI Dictionary of Cancer Terms. National Institute of Health. http://www.cancer.gov/dictionary?CdrID = 445089. Accessed 16th July 2014.

  9. Allart P, Soubeyran P, Cousson-Gelie F. Are psychosocial factors associated with quality of life in patients with haematological cancer? A critical review of the literature. Psycho-Oncology. 2013;22:241–9. doi:10.1002/pon.3026.

    PubMed  Google Scholar 

  10. Swash B, Hulbert-Williams N, Bramwel R. Unmet psychosocial needs in haematological cancer: A systematic review. Support Care Cancer. 2014;22:1131–41. doi:10.1007/s00520-014-2123-5.

    Article  PubMed  CAS  Google Scholar 

  11. Parry C, Morningstar E, Kendall J, Coleman E. Working without a net: Leukaemia and lymphoma survivors' perspectives on care delivery at end-of-treatment and beyond. J Psychosoc Oncol. 2010;29:175–98. doi:10.1080/07347332.2010.548444.

    Article  Google Scholar 

  12. Hall A, Campbell HS, Sanson-Fisher R, Lynagh M, D'Este C, Burkhalter R, et al. Unmet needs of Australian and Canadian haematological cancer survivors: a cross-sectional international comparative study. Psychooncology. 2013;22(9):2032–8. doi:10.1002/pon.3247.

    Article  PubMed  Google Scholar 

  13. Lotfi-Jam K, Schofield P, & Jefford, M. What constitutes ideal survivorship care? Cancer Forum. 2009;33(3).

  14. Jefford M, Karahalios E, Pollard A, Baravelli C, Carey M, Franklin J, et al. Survivorship issues following treatment completion–results from focus groups with Australian cancer survivors and health professionals. J Cancer Survivorship : Res Pract. 2008;2(1):20–32. doi:10.1007/s11764-008-0043-4.

    Article  Google Scholar 

  15. Hewitt M, Greenfield, S., & Stovall, E. Committee on Cancer Survivorship: Improving Care and Quality of Life, Institute of Medicine and National Research Council. From cancer patient to cancer survivor: Lost in transition. National Academic Press; 2005.

  16. Wallace A, Downs E, Gates P, Thomas A, Yates P, Chan RJ. Provision of survivorship care for patients with haematological malignancy at completion of treatment: A cancer nursing practice survey study. European journal of oncology nursing : the official journal of European Oncology Nursing Society. 2015;In press; doi:10.1016/j.ejon.2015.02.012:1-7. doi:10.1016/j.ejon.2015.02.012.

  17. Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health Serv Res. 2007;42(4):1758–72. doi:10.1111/j.1475-6773.2006.00684.x.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Thompson C, McCaughan D, Cullum N, Sheldon TA, Raynor P. Increasing the visibility of coding decisions in team-based qualitative research in nursing. Int J Nurs Stud. 2004;41(1):15–20. doi:10.1016/j.ijnurstu.2003.03.001.

    Article  PubMed  Google Scholar 

  19. JAMA. Users' Guides to the Medical Literature: A manual for evidence-based clinical practice. Chicago: AMA Press; 2002.

    Google Scholar 

  20. Landis JR, Koch GG. The Measurement of Observer Agreement for Categorical Data. Biometrics. 1977;33(1):159–74.

    Article  PubMed  CAS  Google Scholar 

  21. Bugos KG. Issues in adult blood cancer survivorship care. Semin Oncol Nurs. 2015;31(1):60–6. doi:10.1016/j.soncn.2014.11.007.

    Article  PubMed  Google Scholar 

  22. National Coalition for Cancer Survivorship. Our mission. 2015. http://www.canceradvocacy.org/about-us/our-mission/. Accessed 18/02/2015.

  23. McCabe MS, Bhatia S, Oeffinger KC, Reaman GH, Tyne C, Wollins DS, et al. American Society of Clinical Oncology statement: achieving high-quality cancer survivorship care. J Clin Oncol : Off J Am Soc Clin Oncol. 2013;31(5):631–40. doi:10.1200/JCO.2012.46.6854.

    Article  Google Scholar 

  24. Hewitt M, Greenfield S, Stovall Ee. From Cancer Patient to Cancer Survivor: Lost in Transition. Washington, DC: The National Academy of Sciences; 2006.

  25. Shayne M, Cuvakova E, Milano MT, Dhakal S, Constine LS. The integration of cancer survivorship training in the curriculum of hematology/oncology fellows and radiation oncology residents. J Cancer Survivorship. 2014;8(2):167–72.

    Article  Google Scholar 

  26. Klemp JR. Survivorship care planning: one size does not fit all. Semin Oncol Nurs. 2015;31(1):67–72. doi:10.1016/j.soncn.2014.11.008.

    Article  PubMed  Google Scholar 

  27. Parman C. Billing challenges for survivorship services. Oncol Issues. 2013;2013:8–12.

    Google Scholar 

  28. Mayer DK, Gerstel A, Walton AL, Triglianos T, Sadiq TE, Hawkins NA, et al. Implementing survivorship care plans for colon cancer survivors. Oncol Nurs Forum. 2014;41(3):266–73. doi:10.1188/14.ONF.266-273.

    Article  PubMed  PubMed Central  Google Scholar 

  29. Jefford M, Rowland J, Grunfeld E, Richards M, Maher J, Glaser A. Implementing improved post-treatment care for cancer survivors in England, with reflections from Australia, Canada and the USA. Br J Cancer. 2013;108(1):14–20. doi:10.1038/bjc.2012.554.

    Article  PubMed  CAS  PubMed Central  Google Scholar 

  30. Faul LA, Rivers B, Shibata D, Townsend I, Cabrera P, Quinn GP, et al. Survivorship care planning in colorectal cancer: feedback from survivors & providers. J Psychosoc Oncol. 2012;30(2):198–216. doi:10.1080/07347332.2011.651260.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Tessaro I, Campbell MK, Golden S, Gellin M, McCabe M, Syrjala K, et al. Process of diffusing cancer survivorship care into oncology practice. Transl Behav Med. 2013;3(2):142–8. doi:10.1007/s13142-012-0145-4.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Taylor K, Chan RJ, Monterosso L. Models of survivorship care provision in adult patients with haematological cancer: an integrative literature review. Supportive care Cancer : Off J Multinatl Assoc Support Care Cancer. 2015;23(5):1447–58. doi:10.1007/s00520-015-2652-6.

    Article  Google Scholar 

  33. Haylock PJ. Evolving nursing science and practice in cancer survivorship. Semin Oncol Nurs. 2015;31(1):3–12. doi:10.1016/j.soncn.2014.11.002.

    Article  PubMed  Google Scholar 

  34. Gates P, Krishnasamy M. Nurse-led survivorship care. Cancer Forum. 2009;33(3):1–4.

    Google Scholar 

  35. Payne S, Kerr C, Hawker S, Hardey M, Powell J. The communication of information about older people between health and social care practitioners. Age Ageing. 2002;31(2):107–17.

    Article  PubMed  Google Scholar 

  36. Gagliardi AR, Dobrow MJ, Wright FC. How can we improve cancer care? A review of interprofessional collaboration models and their use in clinical management. Surg Oncol. 2011;20(3):146–54. doi:10.1016/j.suronc.2011.06.004.

    Article  PubMed  Google Scholar 

  37. Lofti-Jam K, Schofield P, Jefford M. What consistutes ideal survivorship care? Cancer Forum. 2009;33(3).

  38. Howell D, Hack TF, Oliver TK, Chulak T, Mayo S, Aubin M, et al. Models of care for post-treatment follow-up of adult cancer survivors: a systematic review and quality appraisal of the evidence. J Cancer Survivorship : Res Pract. 2012;6(4):359–71. doi:10.1007/s11764-012-0232-z.

    Article  CAS  Google Scholar 

  39. McCabe MS, Jacobs L. Survivorship care: models and programs. Semin Oncol Nurs. 2008;24(3):202–7. doi:10.1016/j.soncn.2008.05.008.

    Article  PubMed  Google Scholar 

  40. Kitson AL, Rycroft-Malone J, Harvey G, McCormack B, Seers K, Titchen A. Evaluating the successful implementation of evidence into practice using the PARiHS framework: theoretical and practical challenges. Implement Sci. 2008;3:1. doi:10.1186/1748-5908-3-1.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Garcia JB, Evans J, Reshaw M. "Is there anything else you would like to tell us" - Methodological Issues in the Use of Free-Text Comments from Postal Surveys. Qual Quant. 2004;38:113–25.

    Article  Google Scholar 

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Acknowledgments

This study was funded by a Royal Brisbane and Women’s Hospital Diamond Cancer Care Grant. Dr Raymond Chan is supported by a National Health and Medical Research Council (NHMRC) Health Professional Research Fellowship (1070997), Dr Danette Langbecker by a NHMRC Early Career Research Fellowship (1072061). The contents of the published material are solely the responsibility of the Administering Institution, a Participating Institution, or individual authors and do not reflect the views of the NHMRC. The authors would like to thank Cancer Nurses Society of Australia, Haematology Society of Australia and New Zealand and all the nurses who participated in this study.

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. This article does not contain any studies with animals performed by any of the authors.

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Correspondence to Raymond Javan Chan.

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Langbecker, D., Ekberg, S., Yates, P. et al. What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses. J Cancer Surviv 10, 122–130 (2016). https://doi.org/10.1007/s11764-015-0458-7

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