Journal of Cancer Education

, Volume 33, Issue 2, pp 487–492 | Cite as

Utility of a Referral Letter to Improve Comprehensibility of Cancer Patients in Palliative Care: a Single-Center Study

  • Eva-Marie Kloeppel
  • Hani Hanaya
  • Eckart Seilacher
  • Sarah Schroth
  • Patrick Liebl
  • Christian Keinki
  • Marie Jolin Koester
  • Jutta Huebner
Reflection
  • 76 Downloads

Abstract

In spite of a referral letter as an important document for communicating between physicians, whether it could also be useful as a source of information for patients has not yet established. We included cancer patients in palliative care setting, all of whom completed a standardized questionnaire regarding their opinion concerning the utility of a referral letter as a source of information and its requirements to achieve a better understanding. Completed questionnaires were received from 50 cancer patients. Ninety-four percent of participants agreed that a referral letter could be of great importance for procuring medical information to them. There was only minor divergence among the participants respecting age, gender, or education. Particular requirements were diagnosis, treatment plan, prognosis, list of drugs, and contact data of involved physicians. Additional important topics were laboratory values, alternatives to current therapy, side effects and supportive therapy, and advices regarding lifestyle and naturopathy. The majority of patients also concluded to accept technical terms in doctor’s letters if a glossary supported their comprehension. The majority of patients prefer a concise description of medical information in a referral letter. This form of a letter would boost patients’ involvement and help them transfer medical information to other therapists or relatives.

Keywords

Patient information Patient information needs Cancer Referral letter 

Notes

Compliance with Ethical Standards

The study was approved by the Ethical Committee of the J.W. Goethe University, Frankfurt/Main, Germany.

Funding

There was no funding of this study.

Conflict of Interest

The authors declare that they have no conflict of interest.

References

  1. 1.
    Wilkes L, White K, O’Riordan L (2000) Empowerment through information: supporting rural families of oncology patients in palliative care. Aust J Rural Health 8(1):41–46CrossRefPubMedGoogle Scholar
  2. 2.
    Alden DL (2014) Decision aid influences on factors associated with patient empowerment prior to cancer treatment decision making. Med Decis Mak 34(7):884–898CrossRefGoogle Scholar
  3. 3.
    Frosch DL, Kaplan RM, Felitti V (2001) The evaluation of two methods to facilitate shared decision making for men considering the prostate-specific antigen test. J Gen Intern Med 16(6):391–398CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    Butzlaff M, Floer B, Isfort J (2003) “Shared decision making”: Der Patient im Mittelpunkt von Gesundheitswesen und praxisalltag? In: Boecken J, Braun B, Schnee M (Hrsg.): Gesundheitsmonitor; BertelsmannGoogle Scholar
  5. 5.
    Tomlinson K, Barker S, Soden K (2012) What are cancer patients’ experiences and preferences for the provision of written information in the palliative care setting? A focus group study. Palliat Med 26(5):760–765CrossRefPubMedGoogle Scholar
  6. 6.
    Mazur DJ, Hickam DH, Mazur MD (2005) The role of doctor’s opinion in shared decision making: what does shared decision making really mean when considering invasive medical procedures? Health Expect 8(2):97–102CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Mazur DJ, Hickam DH (1997) Patients’ preferences for risk disclosure and role in decision making for invasive medical procedures. J Gen Intern Med 12(2):114–117CrossRefPubMedPubMedCentralGoogle Scholar
  8. 8.
    Osuna E, Perez-Circeles MD, Esteban MA, Luna A (1998) The right to information for the terminally ill patient. J Med Ethics 24:106–109CrossRefPubMedPubMedCentralGoogle Scholar
  9. 9.
    Fallowfield L (1997) Truth sometimes hurts but deceit hurts more. Ann N Y Acad Sci 809:525–537CrossRefPubMedGoogle Scholar
  10. 10.
    Gattellari M, Voigt KJ, Butow PN, Tattersall MHN (2002) When the treatment goal is not cure: are cancer patients equipped to make informed decisions? J Clin Oncol 20(2):503–513CrossRefPubMedGoogle Scholar
  11. 11.
    Jenkins V, Fallowfield L, Saul J (2001) Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 84(1):48–51CrossRefPubMedPubMedCentralGoogle Scholar
  12. 12.
    Pardon K, Deschepper R, Vander Stichele R, et al. (2011) Are patients’ preferences for information and participation in medical decision-making being met? Interview study with lung cancer patients. Palliat Med 25(1):62–70CrossRefPubMedGoogle Scholar
  13. 13.
    Kirk P, Kirk I, Kristjanson LJ (2004) What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. BMJ 328(7452):1–7CrossRefGoogle Scholar
  14. 14.
    Innes S, Payne S (2009) Advanced cancer patients’ prognostic information preferences: a review advanced cancer patients’prognostic information preferences: a review. Palliat Med 23:29–39CrossRefPubMedGoogle Scholar
  15. 15.
    Shea-Budgell MA, Kostaras X, Myhill KP, Hagen NA (2014) Information needs and sources of information for patients during cancer follow-up. Curr Oncol 21:165–173CrossRefPubMedPubMedCentralGoogle Scholar
  16. 16.
    Jones RB, Pearson J, Cawsey AJ, Bental D, Barrett A, White J, White CA, Gilmour WH (2016) Effect of different forms of information produced for cancer patients on their use of the information, social support, and anxiety: randomised trial. BMJ. doi: 10.1136/bmj.38807.571042.68
  17. 17.
    Mills ME, Davidson R. Cancer patients’ sources of information: use and quality issues. Psycho-Oncology 2002;11(5):371–378.Google Scholar
  18. 18.
    Keinki C, Seilacher E, Ebel M, Ruetters D, Kessler I, Stellamanns J, Rudolph I, Huebner J (2016) Information needs of cancer patients and perception of impact of the disease, of self-efficacy and locus of control. J Cancer Educ. doi: 10.1007/s13187-015-0860-x
  19. 19.
    Ebel MD, Stellamanns J, Keinki C, Rudolph I, Huebner J (2016) Cancer patients and the internet: a survey among German cancer patients. J Cancer Educ. doi: 10.1007/s13187-015-0945-6
  20. 20.
    Ruetters D, Keinki C, Schroth S, Liebl P, Huebner J (2016) Is there evidence for a better health care for cancer patients after a second opinion?—a systematic review. J Cancer Res Clin Oncol. doi: 10.1007/s00432-015-2099-7
  21. 21.
    Jelley D, van Zwanenberg T, Walker C (2002) Copying letters to patients. Concerns of clinicians and patients need to be addressed first. BMJ 325(7376):1359CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Damian D, Tattersall MH (1991) Letters to patients: improving communication in cancer care. Lancet 338(8772):923–925CrossRefPubMedGoogle Scholar
  23. 23.
    von Schonfeld C, Roos-Pfeiffer W, Driessen M (2003) Discharge reports to the patients as a contribution to a person-centred therapy—concept and pilot study in a psychiatric day clinic. Psychiatr Prax 30(2):56–61CrossRefGoogle Scholar
  24. 24.
    Stockler M, Butow PN, Tattersall MH (1993) The take-home message: doctors’ views on letters and tapes after a cancer consultation. Ann Oncol 4(7):549–552CrossRefPubMedGoogle Scholar
  25. 25.
    Pitkethly M, Macgillivray S, Ryan R (2008) Recordings or summaries of consultations for people with cancer. Cochrane Database Syst Rev 3:CD001539. doi: 10.1002/14651858.CD001539.pub2 Google Scholar
  26. 26.
    Parker SM, Clayton JM, Hancock K, Walder S, Butow PN, Carrick S, Currow D, Ghersi D, Glare P, Hagerty R, Tattersall MH (2007) A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manag 34(1):81–93CrossRefGoogle Scholar
  27. 27.
    Clayton JM, Butow PN, Tattersall MHN (2005) The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer 103(9):1957–1964CrossRefPubMedGoogle Scholar
  28. 28.
    Constantinidou A, Afuwape SA, Linsell L, Hung T, Acland K, Healy C, Ramirez AJ, Harries M (2009) Informational needs of patients with melanoma and their views on the utility of investigative tests. Int J Clin Pract 63(11):1595–1600CrossRefPubMedGoogle Scholar
  29. 29.
    Piredda M, Rocci L, Gualandi R, Petitti T, Vincnezi B, de Marinis MG (2008) Survey on learning needs and preferred sourcs of information to meet these needs in Italian oncology patients receiving chemotherapy. Eur J Oncol Nurs 12:120–126CrossRefPubMedGoogle Scholar
  30. 30.
    Mistry A, Wilson S, Priestman T, Damery S, Haque MS (2010) How do the information needs of cancer patients differ at different stages of the cancer journey? A cross-sectional survey. JRSM Short Rep 1:30CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    Roberts NJ, Partridge MR (2006) How useful are post consultation letters to patients? BMC Med 4:2–4CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Payne S, Large S, Jarrett N, Turner P (2000) Written information given to patients and families by palliative care units: a national survey. Lancet 355(9217):1792CrossRefPubMedGoogle Scholar
  33. 33.
    White P (2004) Copying referral letters to patients: prepare for change. Patient Educ Couns 54(2):159–161CrossRefPubMedGoogle Scholar
  34. 34.
    Sen M (1997) Communication with cancer patients. The influence of age, gender, education, and health insurance status. Ann N Y Acad Sci 809:514–524CrossRefPubMedGoogle Scholar
  35. 35.
    Boaden R, Harris C (2005) Copying letters to patients—will it happen? Fam Pract 22(2):141–143CrossRefPubMedGoogle Scholar
  36. 36.
    Haq R, Heus NA, Dastur D, Leung FH, Leung E, Li B, et al. (2013) Designing a multifaceted survivorship care plan to meet the information and communication needs of breast cancer patients and their family physicians: results of a qualitative pilot study. BMC Med Inform Decis Mak 13:76CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© American Association for Cancer Education 2016

Authors and Affiliations

  • Eva-Marie Kloeppel
    • 1
  • Hani Hanaya
    • 1
  • Eckart Seilacher
    • 1
  • Sarah Schroth
    • 1
  • Patrick Liebl
    • 1
  • Christian Keinki
    • 1
  • Marie Jolin Koester
    • 1
  • Jutta Huebner
    • 1
  1. 1.Working Group Integrative Oncology, Dr. Senckenberg Chronomedical InstituteJ.W. Goethe UniversityFrankfurtGermany

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