PATIENT-REPORTED EXPERIENCE IN COLORECTAL CANCER CONTINUUM OF CARE. HOW TO TRANSLATE THEM IN A HELPING PROGRAM FOR PATIENTS AND FAMILY?
Background: Patient-focused interventions recognize the role of patients as active participants in the process of delivering effective, safe and responsible healthcare. When equipped with appropriate knowledge, patients can play an important role in their own care by early diagnosing self-limiting conditions and establishing a beneficial relationship with the healthcare team. The purpose of this study was to identify the main changes in bodily processes and their impact on dependency and self-care during colorectal cancer multimodal treatment to further develop a consistent patient-focused intervention protocol.
Methods: A prospective longitudinal design was chosen to describe the evolution of the health condition of colorectal cancer patients during multimodal treatment. Patients were assessed (N = 129) in three separate moments, namely: T1 – after multi-disciplinary-team treatment decision; T2 – three months after T1; and T3 – six months after T1.
Results: The results of this study show that, during treatment, patients with colon or rectal cancer experience significant changes in their health condition. They present a negative evolution on health status related with impairment in the gastrointestinal, circulatory and nervous systems and in psychological, neurovascular and resting processes. Chemotherapy adverse effects significantly reduce the ability to self-care. These patients reveal a higher dependency level in self-care areas, such as: instrumental activities of daily life (IADL) “bathing”, “to dress and undress”, “rising”, “taking medication” and “colostomy”.
Conclusion: The results of this study pose a challenge to health care providers in the sense that these professionals are in a privileged position to help with an appropriate program, patients with colorectal cancer and their family in transition from dependence to supported self-care.
2. Castro C, Antunes L, Lunet N, Bento MJ. Cancer incidence predictions in the North of Portugal: keeping population-based cancer registration up to date. European journal of cancer prevention : the official journal of the European Cancer Prevention Organisation (ECP). 2016;25(5):472-80.
3. Portugal Gd. Portugal Doenças Oncológicas em Número. In: Análise DdSdIe, editor. Porugal 2013. In: DGS, editor. Portugal2013.
4. Roquette R, Painho M, Nunes B. Geographical patterns of the incidence and mortality of colorectal cancer in mainland Portugal municipalities (2007-2011). BMC Cancer. 2019;19(1):512.
5. Barsevick A. Defining the Symptom Cluster: How Far Have We Come? Seminars in Oncology Nursing. 2016;32(4):334-50.
6. Drott J. Neurotoxic side effects and impact on daily life in patients with colorectal cancer with adjuvant oxaliplatin-based chemotherapy [Doctoral thesis, comprehensive summary]. Linköping: Linköping University Electronic Press; 2018.
7. Grimmett C, Haviland J, Winter J, Calman L, Din A, Richardson A, et al. Colorectal cancer patient’s self-efficacy for managing illness-related problems in the first 2 years after diagnosis, results from the ColoREctal Well-being (CREW) study. J Cancer Surviv. 2017;11(5):634-42.
8. Barata PC, Cardoso A, Custodio MP, Alves M, Papoila AL, Antonio B, et al. Symptom clusters and survival in Portuguese patients with advanced cancer. Cancer Med. 2016;5(10):2731-9.
9. Fontes F, Pereira S, Costa AR, Gonçalves M, Lunet N. The impact of breast cancer treatments on sleep quality 1 year after cancer diagnosis. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2017;25(11):3529-36.
10. Schumacher KL, Stewart BJ, Archbold PG, Caparro M, Mutale F, Agrawal S. Effects of caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer treatment. Oncol Nurs Forum. 2008;35(1):49-56.
11. Bubis LD, Davis L, Mahar A, Barbera L, Li Q, Moody L, et al. Symptom Burden in the First Year After Cancer Diagnosis: An Analysis of Patient-Reported Outcomes. Journal of clinical oncology : official journal of the American Society of Clinical Oncology. 2018;36(11):1103-11.
12. Kingsley C, Patel S. Patient-reported outcome measures and patient-reported experience measures. BJA Education. 2017;17(4):137-44.
13. Calisi R, Boyko S, Vendette A, Zagar A. What is Person-Centred Care? A Qualitative Inquiry into Oncology Staff and Patient and Family Experience of Person-Centred Care. J Med Imaging Radiat Sci. 2016;47(4):309-14.
14. Starfield B. Is patient-centered care the same as person-focused care? Perm J. 2011;15(2):63-9.
15. Piamjariyakul U, Williams PD, Prapakorn S, Kim M, Park L, Rojjanasrirat W, et al. Cancer therapy-related symptoms and self-care in Thailand. Eur J Oncol Nurs. 2010;14(5):387-94.
16. Molassiotis A, Wengstrom Y, Kearney N. Symptom cluster patterns during the first year after diagnosis with cancer. J Pain Symptom Manage. 2010;39(5):847-58.
17. Rehwaldt M, Wickham R, Purl S, Tariman J, Blendowski C, Shott S, et al. Self-care strategies to cope with taste changes after chemotherapy. Oncology nursing forum. 2009;36(2):E47-E56.
18. Kidd L, Kearney N, O’Carroll R, Hubbard G. Experiences of self-care in patients with colorectal cancer: a longitudinal study. J Adv Nurs. 2008;64(5):469-77.
19. Braun MS, Seymour MT. Balancing the efficacy and toxicity of chemotherapy in colorectal cancer. Therapeutic advances in medical oncology. 2011;3(1):43-52.
20. Gujral S, Conroy T, Fleissner C, Sezer O, King PM, Avery KN, et al. Assessing quality of life in patients with colorectal cancer: an update of the EORTC quality of life questionnaire. European journal of cancer (Oxford, England : 1990). 2007;43(10):1564-73.
21. Silveira AP, Gonçalves J, Sequeira T, Ribeiro C, Lopes C, Monteiro E, et al. Patient reported outcomes in head and neck cancer: selecting instruments for quality of life integration in clinical protocols. Head & neck oncology. 2010;2:32.
22. Ethun CG, Bilen MA, Jani AB, Maithel SK, Ogan K, Master VA. Frailty and cancer: Implications for oncology surgery, medical oncology, and radiation oncology. CA Cancer J Clin. 2017;67(5):362-77.
23. Carneiro F, Sousa N, Azevedo LF, Saliba D. Vulnerability in elderly patients with gastrointestinal cancer--translation, cultural adaptation and validation of the European Portuguese version of the Vulnerable Elders Survey (VES-13). BMC Cancer. 2015;15:723.
24. Ribeiro C, Moreira L, Silveira A, Silva I, Gestal J, Vasconcelos C. Development and use of touch – screen computer-assisted self interviewing in Portuguese patients with chronic immune diseases: evaluation of an electronic version of sf-36v2. Acta reumatologica portuguesa. 2010;35(2):208-14.
25. UHN. Princess Margaret Cancer Care 2017 [Available from: https://www.uhn.ca/PatientsFamilies/Patient_Services/Pages/default.aspx.