Improving Care for Patients Living with Prolonged Incurable Cancer
Abstract
:Simple Summary
Abstract
1. Prolonged Incurable Cancer: Definition and Unique Needs
2. Palliative Care
3. Survivorship Care
4. Physical Problems
5. Psychosocial Problems
6. Improving Clinical Practice
7. Research Agenda
- What is the epidemiology of patients living with prolonged incurable cancer (prevalence, demographic characteristics and tumor types)?
- How and by whom can patients with prolonged incurable cancer be identified? Are there standardized methods by which this may be done (via medical record review, tumor registries, questionnaires, etc.)?
- What is the epidemiology of experienced physical symptoms for patients with prolonged incurable cancer? How can they best be managed?
- What is the epidemiology of experienced psychosocial symptoms for patients with prolonged incurable cancer? How can they best be managed?
- How are care pathways for patients with prolonged incurable cancer currently organized and how can these be optimized? What are the roles for different healthcare providers, including primary care (e.g., general practitioner), in the care and care coordination for patients with prolonged incurable cancer?
8. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
- Miller, K.D.; Siegel, R.L.; Khan, R.; Jemal, A. Cancer Statistics. Cancer Rehabil. 2018, 70, 7–30. [Google Scholar]
- Jemal, A.; Thun, M.J.; Ries, L.A.G.; Howe, H.L.; Weir, H.K.; Center, M.M.; Ward, E.; Wu, X.-C.; Eheman, C.; Anderson, R.; et al. Annual Report to the Nation on the Status of Cancer, 1975–2005, Featuring Trends in Lung Cancer, Tobacco Use, and Tobacco Control. J. Natl. Cancer Inst. 2008, 100, 1672–1694. [Google Scholar] [CrossRef]
- Golshani, G.; Zhang, Y. Advances in immunotherapy for colorectal cancer: A review. Ther. Adv. Gastroenterol. 2020, 13. Available online: https://pubmed.ncbi.nlm.nih.gov/32536977 (accessed on 1 April 2021). [CrossRef] [PubMed]
- American Cancer Society. American Cancer Society: Cancer Facts and Figures 2021; American Cancer Society: Atlanta, GA, USA, 2021; pp. 13–15. [Google Scholar]
- Mody, K.; Bekaii-Saab, T. Clinical Trials and Progress in Metastatic Colon Cancer. Surg. Oncol. Clin. North Am. 2018, 27, 349–365. [Google Scholar] [CrossRef]
- Integraal Kankercentrum Nederland (IKNL). Uitgezaaide Kanker in Beeld; Integraal Kankercentrum Nederland (IKNL): Utrecht, The Netherlands, 2020. [Google Scholar]
- Boland, C.R.; Goel, A. Microsatellite instability in colorectal cancer. Gastroenterology 2010, 138, 2073–2087.e3. Available online: https://pubmed.ncbi.nlm.nih.gov/20420947 (accessed on 1 April 2021). [CrossRef] [PubMed]
- Kawakami, H.; Zaanan, A.; Sinicrope, F.A. Microsatellite Instability Testing and Its Role in the Management of Colorectal Cancer. Curr. Treat. Options Oncol. 2015, 16. Available online: https://pubmed.ncbi.nlm.nih.gov/26031544 (accessed on 1 April 2021). [CrossRef] [PubMed]
- Hewitt, M.; Greenfield, S.; Stovall, E. From Cancer Patient to Cancer Survivor: Lost in Transition [Internet]. Iom. Edu. 2006. Available online: http://www.nap.edu/catalog/11468.html%5Cnpapers2://publication/uuid/F3750D1F-1021-4BCC-B80C-EA6ED47496B7%5Cnfile:///Users/adamday/Documents/MendeleyDesktop/Survivorship/2006/Survivorship (accessed on 1 April 2021).
- Tometich, D.B.; Hyland, K.A.; Soliman, H.; Jim, H.S.L.; Oswald, L. Living with Metastatic Cancer: A Roadmap for Future Research. Cancers 2020, 12, 3684. [Google Scholar] [CrossRef]
- Jacobsen, P.B.; Rowland, J.H.; Paskett, E.D.; Van Leeuwen, F.; Moskowitz, C.; Katta, S.; Wollins, D.; Robison, L.L. Identification of Key Gaps in Cancer Survivorship Research: Findings From the American Society of Clinical Oncology Survey. J. Oncol. Pract. 2016, 12, 190–193. [Google Scholar] [CrossRef]
- Jacobsen, P.B.; Nipp, R.D.; Ganz, P.A. Addressing the Survivorship Care Needs of Patients Receiving Extended Cancer Treatment. Am. Soc. Clin. Oncol. Educ. Book 2017, 37, 674–683. [Google Scholar] [CrossRef]
- Spoozak, L.; Wulff-Burchfield, E.; Brooks, J.V. Rallying Cry From the Place in Between. JCO Oncol. Pract. 2020, 16, 451–452. [Google Scholar] [CrossRef]
- Langbaum, T.; Smith, T.J. Time to Study Metastatic-Cancer Survivorship. N. Engl. J. Med. 2019, 380, 1300–1302. [Google Scholar] [CrossRef]
- Buiting, H.M. Als niet meer te genezen steeds chronischer wordt: Een focusgroep studie onder huisartsen en medisch specialisten. Huisarts Weenschap 2019, 1–19. [Google Scholar]
- Carlson, M. “Chronic” Metastatic Breast Cancer Is Not A Thing. Cure [Internet]. 29 March 2019. Available online: https://www.curetoday.com/view/chronic-metastatic-breast-cancer-is-not-a-thing (accessed on 1 April 2021).
- Carlson, M. How Do You Die of Chronic Cancer? Cure. 29 March 2020. Available online: https://www.curetoday.com/view/how-do-you-die-of-chronic-cancer (accessed on 1 April 2021).
- Buiting, H.M.; De Bree, R.; Brom, L.; Mack, J.W.; Brekel, M.W.M.V.D. Humour and laughing in patients with prolonged incurable cancer: An ethnographic study in a comprehensive cancer centre. Qual. Life Res. 2020, 29, 2425–2434. [Google Scholar] [CrossRef]
- Ferrell, B.R.; Temel, J.S.; Temin, S.; Smith, T.J. Integration of Palliative Care Into Standard Oncology Care: ASCO Clinical Practice Guideline Update Summary. J. Oncol. Pract. 2017, 13, 119–121. [Google Scholar] [CrossRef] [PubMed]
- World Health Organization. WHO Definition of Palliative Care [Internet]. Available online: http://www.who.int/cancer/palliative/definition/en/ (accessed on 13 January 2016).
- Hoerger, M.; Wayser, G.R.; Schwing, G.; Suzuki, A.; Perry, L.M. Impact of Interdisciplinary Outpatient Specialty Palliative Care on Survival and Quality of Life in Adults With Advanced Cancer: A Meta-Analysis of Randomized Controlled Trials. Ann. Behav. Med. 2019, 53, 674–685. [Google Scholar] [CrossRef] [PubMed]
- Bakitas, M.A.; Tosteson, T.D.; Li, Z.; Lyons, K.D.; Hull, J.G.; Li, Z.; Dionne-Odom, J.N.; Frost, J.; Dragnev, K.H.; Hegel, M.T.; et al. Early Versus Delayed Initiation of Concurrent Palliative Oncology Care: Patient Outcomes in the ENABLE III Randomized Controlled Trial. J. Clin. Oncol. 2015, 33, 1438–1445. [Google Scholar] [CrossRef] [PubMed]
- Temel, J.S.; Greer, J.A.; Muzikansky, A.; Gallagher, E.R.; Admane, S.; Jackson, V.A.; Dahlin, C.M.; Blinderman, C.D.; Jacobsen, J.; Pirl, W.F.; et al. Early Palliative Care for Patients with Metastatic Non–Small-Cell Lung Cancer. N. Engl. J. Med. 2010, 363, 733–742. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Vanbutsele, G.; Pardon, K.; Van Belle, S.; Surmont, V.; De Laat, M.; Colman, R.; Eecloo, K.; Cocquyt, V.; Geboes, K.; Deliens, L. Effect of early and systematic integration of palliative care in patients with advanced cancer: A randomised controlled trial. Lancet Oncol. 2018, 19, 394–404. [Google Scholar] [CrossRef]
- Downar, J.; Goldman, R.; Pinto, R.; Englesakis, M.; Adhikari, N.K. The “surprise question” for predicting death in seriously ill patients: A systematic review and meta-analysis. Can. Med Assoc. J. 2017, 189, E484–E493. Available online: http://www.ncbi.nlm.nih.gov/pubmed/28385893%5Cnhttp://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=PMC5378508 (accessed on 1 April 2021). [CrossRef] [Green Version]
- Moss, A.H.; Ganjoo, J.; Sharma, S.; Gansor, J.; Senft, S.; Weaner, B. Utility of the “Surprise” question to identify dialysis patients with high mortality. Clin. J. Am. Soc. Nephrol. 2008, 3, 1379–1384. [Google Scholar] [CrossRef] [Green Version]
- MacDonald, C.; Theurer, J.A.; Doyle, P.C. “Cured” but not “healed”: The application of principles of palliative care to cancer survivorship. Soc. Sci. Med. 2021, 275, 113802. Available online: https://www.sciencedirect.com/science/article/pii/S0277953621001349 (accessed on 1 April 2021). [CrossRef] [PubMed]
- Geerse, O.P.; Lakin, J.R.; Berendsen, A.J.; Alfano, C.M. Cancer Survivorship and Palliative Care: Shared Progress, Challenges, and Opportunities. Cancer [Internet]; 2018; pp. 1–7. Available online: https://onlinelibrary.wiley.com/doi/abs/10.1002/cncr.31723?af=R (accessed on 1 April 2021).
- Nekhlyudov, L.; Ganz, P.A.; Arora, N.K.; Rowland, J.H. Going Beyond Being Lost in Transition: A Decade of Progress in Cancer Survivorship. J. Clin. Oncol. 2017, 35, 1978–1981. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Nekhlyudov, L.; Mollica, M.A.; Jacobsen, P.B.; Mayer, D.K.; Shulman, L.N.; Geiger, A.M. Developing a Quality of Cancer Survivorship Care Framework: Implications for Clinical Care, Research, and Policy. J. Natl. Cancer Inst. 2019, 111, 1120–1130. [Google Scholar] [CrossRef] [Green Version]
- Mayer, D.K.; Nasso, S.F.; Earp, J.A. Defining cancer survivors, their needs, and perspectives on survivorship health care in the USA. Lancet Oncol. 2017, 18, e11–e18. [Google Scholar] [CrossRef]
- Pachman, D.R.; Barton, D.L.; Swetz, K.M.; Loprinzi, C.L. Troublesome Symptoms in Cancer Survivors: Fatigue, Insomnia, Neuropathy, and Pain. J. Clin. Oncol. 2012, 30, 3687–3696. [Google Scholar] [CrossRef]
- Skerman, H.M.; Yates, P.M.; Battistutta, D. Cancer-related symptom clusters for symptom management in outpatients after commencing adjuvant chemotherapy, at 6 months, and 12 months. Support. Care Cancer 2011, 20, 95–105. [Google Scholar] [CrossRef] [Green Version]
- Deimling, G.T.; Bowman, K.F.; Sterns, S.; Wagner, L.J.; Kahana, B. Cancer-related health worries and psychological distress among older adult, long-term cancer survivors. Psycho-Oncol. 2006, 15, 306–320. Available online: https://doi.org/10.1002/pon.955 (accessed on 1 April 2021). [CrossRef]
- Boyes, A.W.; Girgis, A.; Zucca, A.C.; Lecathelinais, C. Anxiety and depression among long-term survivors of cancer in Australia: Results of a population-based survey. Med. J. Aust. 2009, 190, S94–S98. [Google Scholar] [CrossRef]
- Rosedale, M. Survivor Loneliness of Women Following Breast Cancer. Oncol. Nurs. Forum 2009, 36, 175–183. [Google Scholar] [CrossRef]
- BButow, P.; Laidsaar-Powell, R.; Konings, S.; Lim, C.Y.S.; Koczwara, B. Return to work after a cancer diagnosis: A meta-review of reviews and a meta-synthesis of recent qualitative studies. J. Cancer Surviv. 2019, 14, 114–134. [Google Scholar] [CrossRef]
- Fitch, M.I.; Nicoll, I. Returning to work after cancer: Survivors’, caregivers’, and employers’ perspectives. Psycho-Oncology 2019, 28, 792–798. [Google Scholar] [CrossRef] [PubMed]
- Cocchiara, R.; Sciarra, I.; D’Egidio, V.; Sestili, C.; Mancino, M.; Backhaus, I.; Mannocci, A.; De Luca, A.; Frusone, F.; Di Bella, O.; et al. Returning to work after breast cancer: A systematic review of reviews. Work 2018, 61, 463–476. [Google Scholar] [CrossRef] [PubMed]
- Lynn, J.; Adamson, D.M. Living Well at the End of Life Adapting Health Care to Serious Chronic Illness in Old Age; Rand Corp.: St. Monica, CA, USA, 2003. [Google Scholar]
- Stegmann, M.E.; Geerse, O.P.; Tange, D.; Richel, C.; Brom, L.; Engelen, V.; Duijts, S.F.A. Experiences and needs of patients with incurable cancer regarding advance care planning: Results from a national cross-sectional survey. Support. Care Cancer 2020, 28, 4211–4217. [Google Scholar] [CrossRef] [PubMed]
Publisher’s Note: MDPI stays neutral with regard to jurisdictional claims in published maps and institutional affiliations. |
© 2021 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
Stegmann, M.E.; Geerse, O.P.; van Zuylen, L.; Nekhlyudov, L.; Brandenbarg, D. Improving Care for Patients Living with Prolonged Incurable Cancer. Cancers 2021, 13, 2555. https://doi.org/10.3390/cancers13112555
Stegmann ME, Geerse OP, van Zuylen L, Nekhlyudov L, Brandenbarg D. Improving Care for Patients Living with Prolonged Incurable Cancer. Cancers. 2021; 13(11):2555. https://doi.org/10.3390/cancers13112555
Chicago/Turabian StyleStegmann, Mariken E., Olaf P. Geerse, Lia van Zuylen, Larissa Nekhlyudov, and Daan Brandenbarg. 2021. "Improving Care for Patients Living with Prolonged Incurable Cancer" Cancers 13, no. 11: 2555. https://doi.org/10.3390/cancers13112555
APA StyleStegmann, M. E., Geerse, O. P., van Zuylen, L., Nekhlyudov, L., & Brandenbarg, D. (2021). Improving Care for Patients Living with Prolonged Incurable Cancer. Cancers, 13(11), 2555. https://doi.org/10.3390/cancers13112555