Concordancia de información paciente-cuidador en cáncer avanzado

  1. Navarro Jiménez, José Miguel
  2. Cruzado Rodríguez, Juan Antonio
  3. Boya Cristiá, María Jesús
Journal:
Psicooncología: investigación y clínica biopsicosocial en oncología

ISSN: 1696-7240

Year of publication: 2022

Volume: 19

Issue: 2

Pages: 283-298

Type: Article

DOI: 10.5209/PSIC.84041 DIALNET GOOGLE SCHOLAR lock_openOpen access editor

More publications in: Psicooncología: investigación y clínica biopsicosocial en oncología

Abstract

Introduction: The presence of an advanced cancer is usually one of the situations that causes a greater crisis of family stability and leads to greater interaction between family members. Sometimes the progression of the disease causes a high deterioration of the patient, puts their autonomy at risk and conditions their own decision-making. In this situation, the role of the caregiver is key in the decisionmaking process about the patient’s care plan, respecting their preferences and wishes, therefore adequate communication and concordance about the information on the disease is a priority. Objective: to assessthe concordance of the information that patients with advanced cancer and their main caregiver have,attended by a hospital support team for palliative care, and to determine the variables that are associatedwith concordance. Method: 52 patient-caregiver dyads attended by the Palliative Care Hospital SupportTeam of the University Hospital of Getafe were included. The information, sociodemographic andpsychoaffective variables of the patient and main caregiver were collected through an interview.Results: The concordance of the information between the patient and his main caregiver was 78.8% onthe diagnosis and severity; 43.5% about healing; 48.0% over the treatment objective, and 43.7% at theend of life; being the concordance of 71.4% in not knowing neither patient nor caregiver at the end oflife. Conclusions: There is a lack of information and little concordance between the patient and theirprimary caregivers. It is necessary to apply protocols that facilitate communication for professionals.The tool used to assess the level of information allows

Bibliographic References

  • 1. Lee JK, Keam B, An AR, Kim TM, Lee SH, Kim DW, Heo DS. Surrogate decision-making in Korean patients with advanced cancer: a longitudinal study. Support Care Cancer 2013; 21:183-90. https://doi.org/10.1007/s00520-012-1509-5.
  • 2. Emanuel EJ, Emanuel LL. Proxy decision making for incompetent patients: an ethical and empirical analysis. JAMA 1992;267: 2067-71. https://doi.org/0.1001/ jama.1992.03480150073040
  • 3. Rabow MW, Hauser JM, Adams J. Supporting family caregivers at the end of life: “they don’t know what they don’t know”. JAMA 2004;291:483-91. https://doi.org/10.1001/ jama.291.4.483
  • 4. Hancock K, Clayton JM, Parker SM, Walder S, Butow PN, Carrick S, et al. Discrepant perceptions about end-of-life communication: a systematic review. J Pain Symptom Manage 2007;34:190-200. https://doi.org/ 10.1016/j.jpainsymman.2006.11.009.
  • 5. Yun YH, Kwon YC, Lee MK, Lee WJ, Jung KH, Do YR, et al. Experiences and attitudes of patients with terminal cancer and their family caregivers toward the disclosure of terminal illness. J Clin Oncol 2010;28:1950-7. https://doi.org/10.1200/JCO.2009.22.9658
  • 6. Tang ST, Liu TW, Lai MS, Liu LN, Chen CH, Koong SL. Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan. Cancer Invest 2006;24:360-6. https://doi.org/10.1080/07357900600705284.
  • 7. Burns CM, Broom DH, Smith WT, Dear K, Craft PS. Fluctuating awareness of treatment goals among patients and their caregivers: a longitudinal study of a dynamic process. Support Care Cancer 2007;15:187-96. https://doi.org/ 10.1007/s00520-006-0116-8.
  • 8. Shin DW, Cho J, Kim SY, Yang HK, Park K, Kweon SS, et al. Patients’ and family caregivers’ understanding of the cancer stage, treatment goal, and chance of cure: A study with patient-caregiver-physician triad. Psychooncology 2018;27:106-113. https:// doi.org/ 10.1002/pon.4467
  • 9. Sato T, Soejima K, Fujisawa D, Takeuchi M, Arai D, Nakachi I, et al. Prognostic understanding at diagnosis and associated factors in patients with advanced lung cancer and their caregivers. Oncologist 2018;23:1218-29. https://doi.org/10.1634/ theoncologist.2017-0329
  • 10. Burns CM, Dixon T, Broom D, Smith WT, Craft PS. Family caregiver knowledge of treatment intent in a longitudinal study of patients with advanced cancer. Support Care Cancer 2003;11:629-37. https://doi.org/ 10.1007/s00520-003-0501-5.
  • 11. Kaplowitz SA, Campo S, Chiu WT. Cancer patients’ desires for communication of prognosis information. Health Commun 2002;14:221-41. https://doi.org/10.1207/ S15327027HC1402_4.12.
  • 12. Lennes IT, Temel JS, Hoedt C, Meilleur A, Lamont EB. Predictors of newly diagnosed cancer patients’ understanding of the goals of their care at initiation of chemotherapy. Cancer 2013;119:691-9. https://doi.org/10.1002/cncr.27787.
  • 13. Pronzato P, Bertelli G, Losardo P, Landucci M. What do advance cancer patients know of their disease? Support Care Cancer 1994;2:242-4. https://doi.org/10.1007/BF00365729
  • 14. Gattellari M, Voigt KJ, Butow PN, Tattersall MH. When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol 2002;20:503-13. https://doi.org/ 10.1200/JCO.2002.20.2.503.
  • 15. Fumis RR, Deheinzelin D. Family members of critically ill cancer patients: assessing the symptoms of anxiety and depression. Intensive Care Med 2009;35:899-902. https://doi. org/ 10.1007/s00134-009-1406-7.
  • 16. Navarro Jiménez JM, Cruzado Rodríguez JA, Domínguez Cruz A, García García B, Honrado López Y, Boya Cristiá MJ. Los deseos de información en pacientes con cáncer avanzado. Psicooncología 2022; 19: 139-151. https://dx.doi.org/10.5209/psic.80803
  • 17. Centeno-Cortés C, Núñez-Olarte JM. Questioning diagnosis disclosure in terminal cancer patients: a prospective study evaluating patients’ responses. Palliat Med 1994;8:39-44. https://doi.org/ 10.1177/026921639400800107.
  • 18. Craft PS, Burns CM, Smith WT, Broom DH. Knowledge of treatment intent among patients with advanced cancer: a longitudinal study. Eur J Cancer Care 2005;14:417-25. https://doi.org/ 10.1111/j.1365-2354.2005.00601.x.
  • 19. Back AL, Anderson WG, Bunch L, Marr LA, Wallace JA, Yang HB, et al. Communication about cancer near the end of life. Cancer 2008;113(7 Suppl):1897-910. https://doi.org/ 10.1002/cncr.23653.
  • 20. Juárez RM, Río-Valle JS, Caro MG, García PG, Casado JC, Quintana FC. Influencia de la comunicación del diagnóstico y el pronóstico en el sufrimiento del enfermo terminal. Medicina Paliativa 2010;17: 24-30
  • 21. Temel JS, Greer JA, Admane S, Gallagher ER, Jackson VA, Lynch TJ, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-smallcell lung cancer: results of a randomized study of early palliative care. J Clin Oncol 2011;29:2319-26. https://doi.org/ 10.1200/JCO.2010.32.4459.
  • 22. Kim SY, Kim JM, Kim SW, Shin IS, Bae KY, Shim HJ, et al. Does awareness of terminal status influence survival and quality of life in terminally ill cancer patients? Psychooncology 2013;22:2206-13. https://doi.org/10.1002/pon.3275.
  • 23. Costantini A, Grassi L, Picardi A, Brunetti S, Caruso R, Nanni MG, et al. Awareness of cancer, satisfaction with care, emotional distress, and adjustment to illness: an Italian multicenter study. Psychooncology 2015;24:1088-96. https://doi.org/ 10.1002/pon.3768.
  • 24. Enzinger AC, Zhang B, Schrag D, Prigerson HG. Outcomes of prognostic disclosure: associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. J Clin Oncol 2015;33:3809-16. https://doi.org/ 10.1200/JCO.2015.61.9239.
  • 25. Anderson F, Downing GM, Hill J, Casorso L, Lerch N. Palliative Performance Scale (PPS): a new tool. J Palliat Care 1996;12:5-11. doi.org/10.1177%2F082585979601200102
  • 26. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica 1983; 67: 361-70. doi.org/10.1111/j.1600-0447. 1983.tb09716.x
  • 28. Tejero A, Guimerá E, Farré J, Peri J. Uso clínico del HAD (Hospital Anxiety and Depression Scale) en población psiquiátrica: Un estudio de su sensibilidad, fiabilidad y validez. Rev Psiquiatría Fac Med Barna 1986;13:233-8.
  • 29. Charlson ME, Pompei P, Ales KL, MacKenzie CR. A new method of classifying prognostic comorbidity in longitudinal studies: development and validation. J Chronic Dis 1987;40:373-83. https://doi.org/ 10.1016/0021-9681(87)90171-8
  • 30. Zarit SH, Reever KE, Bach-Peterson J. Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 1980;20:649-55. https://doi.org/ 10.1093/ geront/20.6.649.
  • 31. Martín M, Salvadó I, Nadal S, Miji LC, Rico JM, Lanz P, et al. Adaptación para nuestro medio de la Escala de Sobrecarga del Cuidador (Caregiver Burden Interview) de Zarit. Rev Gerontol 1996;6:338-46.
  • 32. Gort AM, March J, Gómez X, De Miguel M, Mazarico S, Ballesté J. Escala de Zarit reducida en cuidados paliativos. Med Clin (Barc) 2005;124:651-3.
  • 33. Hinton J. The progress of awareness and acceptance of dying assessed in cancer patients and their caring relatives. Palliat Med 1999;13:19-35. https://doi.org/ 10.1191/026921699672169546.
Data source: Dialnet