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Understanding the Symptom Experience of Patients with Gastrointestinal Cancers in the First Year Following Diagnosis: Findings from a Qualitative Longitudinal Study

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Abstract

Background

The aim of the paper was to explore the experiences of people with gastrointestinal cancer within the first year following their diagnosis. The main objective was to contextualise and map the experiences of this cancer population over the first year following diagnosis to determine the indicators of change so that these patients might be supported at the most appropriate time points.

Methods

A qualitative longitudinal study design using semistructured interviews was adopted for this study with a heterogeneous sample of 18 patients with gastrointestinal cancers. Interviews were conducted on four time points over the first year providing a total of 60 interview datasets.

Results

Five key themes generated from the analysis including symptoms; impact of symptoms on everyday life; return to work and survivorship; impact on sense of self, and fear and uncertainty.

Conclusions

These findings provide important insight into the process of change which occurs over the first year following diagnosis and enhances our understanding of the most appropriate time points for support.

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References

  1. Gustafsson BI, Siddique L, Chan A, Dong M, Drozdov I, Kidd M, Modlin IM. Uncommon cancers of the small intestine, appendix and colon: an analysis of SEER 1973–2004, and current diagnosis and therapy. Int J Oncol. 2010;33(6):1121–31.

    Google Scholar 

  2. Milosavljevic T, Kostic-Milosaljevic M, Jovanovic I, Krstic M. Gastrointestinal and liver tumours and public health in Europe. Eur Rev Med Pharm Sci. 2010;14(4):259–62.

    CAS  Google Scholar 

  3. Alfano CM, Rowland JH. Recovery issues in cancer survivorship: a new challenge for supportive care. Cancer J. 2006;12(5):432–43.

    Article  PubMed  Google Scholar 

  4. Haller D. Recovering the thread of life—destruction and reconstruction of the social world of patients after cancer of the colon. Pflege. 1995;8(3):187–202.

    PubMed  CAS  Google Scholar 

  5. Simpson MF, Whyte F. Patients’ experiences of completing treatment for colorectal cancer in a Scottish District General Hospital. Eur J Cancer Care. 2006;15(2):172–82.

    Article  CAS  Google Scholar 

  6. National Cancer Survivor Initiative. Priorities for research on cancer survivorship: A report from the National Cancer Survivorship Initiative Research Workstream. 2010. Available at: www.ncsi.org.uk

  7. Lopez V, Copp G, Brunton L, Molassiotis A. Symptom experience in patients with gynecological cancers: the development of symptom clusters through patient narratives. J Support Oncol. 2011;9(2):64–71.

    Article  PubMed  Google Scholar 

  8. Tighe M, Molassiotis A, Morris J, Richardson J. Coping, meaning and symptom experience: a narrative approach to the overwhelming impacts of breast cancer in the first year following diagnosis. Eur J Oncol Nurs. 2011;15(3):226–32.

    Article  PubMed  CAS  Google Scholar 

  9. Lowe M, Molassiotis A. A longitudinal qualitative analysis of the factors that influence patient distress within the lung cancer population. Lung Cancer. 2011;74(2):344–8.

    Article  PubMed  CAS  Google Scholar 

  10. Molassiotis A, Wilson B, Brunton L, Chaudhary H, Gattamaneni R, McBain C. Symptom experience in patients with primary brain tumours: a longitudinal exploratory study. Eur J Oncol Nurs. 2010;14(5):410–6.

    Article  PubMed  Google Scholar 

  11. Molassiotis A, Lowe M, Blackhall F, Lorigan P. A qualitative exploration of a respiratory distress symptom cluster in lung cancer: cough, breathlessness and fatigue. Lung Cancer. 2011;71(1):94–102.

    Article  PubMed  CAS  Google Scholar 

  12. Johansson E, Wilson B, Brunton L, Tishelman C, Molassiotis A. Symptoms before, during, and 14 months after the beginning of treatment as perceived by patients with lymphoma. Oncol Nurs Forum. 2010;37(2):E105–13.

    Article  PubMed  Google Scholar 

  13. Leventhal H, Johnson J. Laboratory and field experimentation: development of a theory of self-regulation. In: Wooldridge P, Schmitt M, Skipper J, Leonard R, editors. Behavioral science and nursing theory. St. Louis, MO: Mosby; 1983. p. 189–262.

    Google Scholar 

  14. Miles MB, Huberman AM. Qualitative data analysis: an expanded sourcebook. New York: SAGE; 1994.

    Google Scholar 

  15. Cooley ME, Short TH, Moriarty HJ. Symptom prevalence, distress, and change over time in adults receiving treatment for lung cancer. Psycho–Oncol. 2003;12(7):694–708.

    Article  Google Scholar 

  16. Barton-Burke M. Cancer-related fatigue and sleep disturbances: further research on the prevalence of these two symptoms in long-term cancer survivors can inform education, policy, and clinical practice. Cancer Nurs. 2006;29(2):72–7.

    Article  PubMed  Google Scholar 

  17. Rozmovits L, Ziebland S. Expressions of loss of adulthood in the narratives of people with colorectal cancer. Qual Health Res. 2004;14(2):187–203.

    Article  PubMed  Google Scholar 

  18. Lawrence DP, Kupelnick B, Miller K, Devine D, Lau J. Evidence report on the occurrence, assessment, and treatment of fatigue in cancer patients. JNCI Monogr. 2004;2004(32):40–50.

    Article  Google Scholar 

  19. Nail LM. Cognitive changes in cancer survivors: cancer and cancer treatment often cause cognitive deficits, but no guidelines exist for screening or treatment. Am J Nurs. 2006;106:48–54.

    Article  PubMed  Google Scholar 

  20. Anderson-Hanley C, Sherman ML, Riggs R, Agocha VB, Compas BE. Neuropsychological effects of treatments for adults with cancer: a meta-analysis and review of the literature. J Int Neuropsych Soc. 2003;9(7):967–82.

    Article  Google Scholar 

  21. Heflin LH, Meyerowitz BE, Hall P, Lichtenstein P, Johansson B, Pedersen NL, Gatz M. Cancer as a risk factor for long-term cognitive deficits and dementia. J Nat Cancer Inst. 2005;97(11):854–6.

    Article  PubMed  Google Scholar 

  22. Peteet JR. Cancer and the meaning of work. Gen Hosp Psych. 2000;22(3):200–5.

    Article  CAS  Google Scholar 

  23. Steiner JF, Cavender TA, Main DS, Bradley CJ. Assessing the impact of cancer on work outcomes. Cancer. 2004;101(8):1703–11.

    Article  PubMed  Google Scholar 

  24. Arndt V, Merx H, Stegmaier C, Ziegler H, Brenner H. Quality of life in patients with colorectal cancer 1 year after diagnosis compared with the general population: a population-based study. J Clin Oncol. 2004;22(23):4829–36.

    Article  PubMed  Google Scholar 

  25. Sanchez KM, Richardson JL, Mason HR. The return to work experiences of colorectal cancer survivors. AAOHN J. 2004;52(12):500–10.

    PubMed  Google Scholar 

  26. Hubbard G, Kidd L, Kearney N. Disrupted lives and threats to identity: the experiences of people with colorectal cancer within the first year following diagnosis. Health. 2010;14(2):131–46.

    PubMed  Google Scholar 

  27. Manderson L. Boundary breaches: the body, sex and sexuality after stoma surgery. Soc Sci Med. 2005;61(2):405–15.

    Article  PubMed  Google Scholar 

  28. Knowles G, Tierney A, Jodrell D, Cull A. The perceived information needs of patients receiving adjuvant chemotherapy for surgically resected colorectal cancer. Eur J Oncol Nurs. 1999;3(4):208–20.

    Article  Google Scholar 

  29. Benzein E, Norberg A, Saveman BI. The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Med. 2001;15(2):117–26.

    Article  PubMed  CAS  Google Scholar 

  30. Benzein E, Saveman BI. Nurses’ perception of hope in patients with cancer: a palliative care perspective. Cancer Nurs. 1998;21(1):10–6.

    Article  PubMed  CAS  Google Scholar 

  31. Berterö C, Vanhanen M, Appelin G. Receiving a diagnosis of inoperable lung cancer: patients’ perspectives of how it affects their life situation and quality of life. Acta Oncol. 2008;47(5):862–9.

    Article  PubMed  Google Scholar 

  32. Berendes D, Keefe FJ, Somers TJ, Kothadia SM, Porter LS, Cheavens JS. Hope in the context of lung cancer: relationships of hope to symptoms and psychological distress. J Pain Symptom Manag. 2010;40(2):174–82.

    Article  Google Scholar 

  33. Deimling GT, Bowman KF, Sterns S, Wagner LJ, Kahana B. Cancer–related health worries and psychological distress among older adult, long–term cancer survivors. Psycho–Oncol. 2006;15(4):306–20.

    Article  Google Scholar 

  34. Harrison SE, Watson EK, Ward AM, Khan NF, Turner D, Adams E, Forman D, Roche MF, Rose PW. Primary health and supportive care needs of long-term cancer survivors: a questionnaire survey. J Clin Oncol. 2011;29(15):2091–8.

    Article  PubMed  Google Scholar 

  35. Bennion AE, Molassiotis A. Qualitative research into the symptom experiences of adult cancer patients after treatments: a systematic review and meta-synthesis. Support Care Cancer. 2012. doi:10.1007/s00520-012-1573-x.

  36. Quinn Patton M. Qualitative research and evaluation methods. 3rd ed. Thousand Oaks: Sage; 2002. p. 235.

    Google Scholar 

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Acknowledgments

Funding for this study, as part of a programme grant on Patient Experience of Cancer Symptoms, was obtained from the Christie Hospital Charitable Fund.

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Authors and Affiliations

  1. School of Nursing, Midwifery and Social Work, University of Manchester, University Place, Manchester, M13 9PL, UK

    J. Ellis & A. Molassiotis

  2. Faculty of Health and Medicine, Lancaster University, Lancaster, UK

    S. G. Brearley

  3. Christie NHS Foundation Trust, Manchester, UK

    O. Craven

  4. School of Nursing, Hong Kong Polytechnic University, Hong Kong, SAR, China

    A. Molassiotis

Authors
  1. J. Ellis
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  2. S. G. Brearley
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  3. O. Craven
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  4. A. Molassiotis
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Correspondence to A. Molassiotis.

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Ellis, J., Brearley, S.G., Craven, O. et al. Understanding the Symptom Experience of Patients with Gastrointestinal Cancers in the First Year Following Diagnosis: Findings from a Qualitative Longitudinal Study. J Gastrointest Canc 44, 60–67 (2013). https://doi.org/10.1007/s12029-012-9443-9

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  • DOI: https://doi.org/10.1007/s12029-012-9443-9

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