Skip to main content

Advertisement

Log in

Patient and oncologist perceptions regarding symptoms and impact on quality-of-life of oral mucositis in cancer treatment: results from the Awareness Drives Oral Mucositis PercepTion (ADOPT) study

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

This descriptive cross-sectional survey aims to assess the level of concordance between the perspectives of oncologists and those of patients regarding oral mucositis (OM) symptoms, and the impact of OM on various aspects of daily living and concurrent cancer management.

Methods

Oncologists involved in OM management (n = 105), and patients who developed OM during cancer treatment (n = 175), were recruited from seven Asian countries. Oncologists completed a face-to-face, quantitative interview; patients completed a face-to-face interview, and a self-reported questionnaire.

Results

Oncologists and patients ranked treatment-induced OM among the three most important toxicities of cancer therapy requiring intervention. The most frequent OM symptoms reported by patients were oral ulcers (74%), dry mouth (73%), and difficulty swallowing (62%). Oncologists expected mild OM symptoms to last slightly longer than 1 week, whereas patients reported mild symptoms for more than 2 weeks. In mild-to-moderate OM, oncologists underestimated patients’ pain experience. Overall, only 45% of oncologists said they would initiate OM prophylaxis when cancer therapy started. Of the 87% of patients who said they used their prescribed medications, only 16% reported using prophylactically prescribed medication. While oncologists’ concerns related to the delays and interruptions of cancer treatment, patients tended to focus on the effects of OM on eating, drinking, and talking.

Conclusions

Oncologists’ and patients’ perceptions about treatment-induced OM differ. To overcome discordant perspectives, there is a need to raise general awareness and improve proactive management of OM. As noted in recent guidelines, supportive cancer care is critical for ensuring optimal therapy and for improving the patient’s experience.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1
Fig. 2
Fig. 3
Fig. 4

Similar content being viewed by others

References

  1. Al-Ansari S, Zecha JA, Barasch A, de Lange J, Rozema FR, Raber-Durlacher JE (2015) Oral mucositis induced by anticancer therapies. Curr Oral Health Rep 2(4):202–211. https://doi.org/10.1007/s40496-015-0069-4

    Article  PubMed  PubMed Central  Google Scholar 

  2. Belgioia L, Bacigalupo A, Alterio D, Russi E, Corvo R (2015) Management of oropharyngeal mycosis in head and neck cancer occurring during (chemo) radiotherapy: an Italian radio-oncologist survey. Tumori 101(3):312–317. https://doi.org/10.5301/tj.5000284

    Article  PubMed  CAS  Google Scholar 

  3. Bensinger W, Schubert M, Ang KK, Brizel D, Brown E, Eilers JG, Elting L, Mittal BB, Schattner MA, Spielberger R, Treister NS, Trotti AM, 3rd (2008) NCCN Task Force Report. prevention and management of mucositis in cancer care Journal of the National Comprehensive Cancer Network : JNCCN 6 Suppl 1: S1–21

  4. Borbasi S, Cameron K, Quested B, Olver I, Evans D (2002) More than a sore mouth: patients’ experience of oral mucositis. Oncol Nurs Forum 29:183–205

    Article  Google Scholar 

  5. Bossi P, Numico G, De Santis V, Ruo Redda MG, Reali A, Belgioia L, Cossu Rocca M, Orlandi E, Airoldi M, Bacigalupo A, Mazzer M, Saibene G, Russi E (2014) Prevention and treatment of oral mucositis in patients with head and neck cancer treated with (chemo) radiation: report of an Italian survey. Support Care Cancer 22(7):1889–1896. https://doi.org/10.1007/s00520-014-2166-7

    Article  PubMed  Google Scholar 

  6. Cheng KK (2007) Oral mucositis and quality of life of Hong Kong Chinese patients with cancer therapy. European journal of oncology nursing : the official journal of European Oncology Nursing Society 11(1):36–42. https://doi.org/10.1016/j.ejon.2006.03.004

    Article  Google Scholar 

  7. Cheng KK, Leung SF, Liang RH, Tai JW, Yeung RM, Thompson DR (2010) Severe oral mucositis associated with cancer therapy: impact on oral functional status and quality of life. Support Care Cancer 18(11):1477–1485. https://doi.org/10.1007/s00520-009-0771-7

    Article  PubMed  Google Scholar 

  8. Cheng KK, Molassiotis A, Chang AM, Wai WC, Cheung SS (2001) Evaluation of an oral care protocol intervention in the prevention of chemotherapy-induced oral mucositis in paediatric cancer patients European journal of cancer (Oxford, England) : 1990) 37: 2056–2063

  9. De Sanctis V, Bossi P, Sanguineti G, Trippa F, Ferrari D, Bacigalupo A, Ripamonti CI, Buglione M, Pergolizzi S, Langendjik JA, Murphy B, Raber-Durlacher J, Russi EG, Lalla RV (2016) Mucositis in head and neck cancer patients treated with radiotherapy and systemic therapies: literature review and consensus statements. Crit Rev Oncol Hematol 100:147–166. https://doi.org/10.1016/j.critrevonc.2016.01.010

    Article  PubMed  Google Scholar 

  10. Dein S (2004) Explanatory models of and attitudes towards cancer in different cultures. The Lancet Oncology 5(2):119–124. https://doi.org/10.1016/S1470-2045(04)01386-5

    Article  PubMed  Google Scholar 

  11. Dodd MJ, Dibble S, Miaskowski C, Paul S, Cho M, MacPhail L, Greenspan D, Shiba G (2001) A comparison of the affective state and quality of life of chemotherapy patients who do and do not develop chemotherapy-induced oral mucositis. J Pain Symptom Manag 21(6):498–505. https://doi.org/10.1016/S0885-3924(01)00277-9

    Article  CAS  Google Scholar 

  12. Elting LS, Keefe DM, Sonis ST, Garden AS, Spijkervet FK, Barasch A, Tishler RB, Canty TP, Kudrimoti MK, Vera-Llonch M, Burden of Illness H, Neck Writing C (2008) Patient-reported measurements of oral mucositis in head and neck cancer patients treated with radiotherapy with or without chemotherapy: demonstration of increased frequency, severity, resistance to palliation, and impact on quality of life. Cancer 113(10):2704–2713. https://doi.org/10.1002/cncr.23898

    Article  PubMed  Google Scholar 

  13. European Society for Opinion and Market Research (2008) ICC/ESOMAR Code on Market and Social Research. In: Editor (ed)^(eds) Book ICC/ESOMAR Code on Market and Social Research., City

  14. Farooqui M, Hassali MA, Shatar AK, Shafie AA, Seang TB, Farooqui MA (2011) A qualitative exploration of Malaysian cancer patients' perspectives on cancer and its treatment. BMC Public Health 11(1):525. https://doi.org/10.1186/1471-2458-11-525

    Article  PubMed  PubMed Central  Google Scholar 

  15. Fromme EK, Eilers KM, Mori M, Hsieh YC, Beer TM (2004) How accurate is clinician reporting of chemotherapy adverse effects? A comparison with patient-reported symptoms from the Quality-of-Life Questionnaire C30. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 22(17):3485–3490. https://doi.org/10.1200/JCO.2004.03.025

    Article  Google Scholar 

  16. Jones JA, Avritscher EB, Cooksley CD, Michelet M, Bekele BN, Elting LS (2006) Epidemiology of treatment-associated mucosal injury after treatment with newer regimens for lymphoma, breast, lung, or colorectal cancer. Support Care Cancer 14(6):505–515. https://doi.org/10.1007/s00520-006-0055-4

    Article  PubMed  Google Scholar 

  17. Keefe DM, Schubert MM, Elting LS, Sonis ST, Epstein JB, Raber-Durlacher JE, Migliorati CA, McGuire DB, Hutchins RD, Peterson DE (2007) Updated clinical practice guidelines for the prevention and treatment of mucositis. Cancer 109(5):820–831. https://doi.org/10.1002/cncr.22484

    Article  PubMed  CAS  Google Scholar 

  18. Lai JS, Beaumont JL, Diaz J, Khan S, Cella D (2016) Validation of a short questionnaire to measure symptoms and functional limitations associated with hand-foot syndrome and mucositis in patients with metastatic renal cell carcinoma. Cancer 122(2):287–295. https://doi.org/10.1002/cncr.29655

    Article  PubMed  CAS  Google Scholar 

  19. Lalla RV (2015) Alleviating mucositis: are we on track for a novel therapeutic? Expert Rev Gastroenterol Hepatol 9(2):127–128. https://doi.org/10.1586/17474124.2015.965146

    Article  PubMed  CAS  Google Scholar 

  20. Lalla RV, Bowen J, Barasch A, Elting L, Epstein J, Keefe DM, McGuire DB, Migliorati C, Nicolatou-Galitis O, Peterson DE, Raber-Durlacher JE, Sonis ST, Elad S, Mucositis Guidelines Leadership Group of the Multinational Association of Supportive Care in Cancer, International Society of Oral Oncology (2014) MASCC/ISOO clinical practice guidelines for the management of mucositis secondary to cancer therapy Cancer 120: 1453–1461

  21. Lalla RV, Sonis ST, Peterson DE (2008) Management of oral mucositis in patients who have cancer. Dent Clin N Am 52(1):61–77, viii. https://doi.org/10.1016/j.cden.2007.10.002

    Article  PubMed  PubMed Central  Google Scholar 

  22. Merriam S, Muhamad M (2013) Roles traditional healers play in cancer treatment in Malaysia: implications for health promotion and education. Asian Pac J Cancer Prev 14(6):3593–3601. https://doi.org/10.7314/APJCP.2013.14.6.3593

    Article  PubMed  Google Scholar 

  23. Peterson DE, Bensadoun RJ, Roila F (2011) Management of oral and gastrointestinal mucositis: ESMO Clinical Practice Guidelines Annals of oncology : official journal of the European Society for Medical Oncology / ESMO 22 Suppl 6: vi78–84

  24. Sheikh I, Ogden J (1998) The role of knowledge and beliefs in help seeking behaviour for cancer: a quantitative and qualitative approach. Patient Educ Couns 35(1):35–42. https://doi.org/10.1016/S0738-3991(98)00081-0

    Article  PubMed  CAS  Google Scholar 

  25. The College of Surgeons of England, The British Society for Disability and Oral Health (2012) The oral management of oncology patients requiring radiotherapy, chemotherapy and / or bone marrow transplantation. In: Editor (ed)^(eds) Book The oral management of oncology patients requiring radiotherapy, chemotherapy and / or bone marrow transplantation, City

  26. Tomlinson D, Gibson F, Treister N, Baggott C, Judd P, Hendershot E, Maloney AM, Doyle J, Feldman B, Kwong K, Sung L (2009) Understandability, content validity, and overall acceptability of the Children's International Mucositis Evaluation Scale (ChIMES): child and parent reporting. J Pediatr Hematol Oncol 31(6):416–423. https://doi.org/10.1097/MPH.0b013e31819c21ab

    Article  PubMed  Google Scholar 

  27. Vagliano L, Feraut C, Gobetto G, Trunfio A, Errico A, Campani V, Costazza G, Mega A, Matozzo V, Berni M, Alberani F, Banfi MM, Martinelli L, Munaron S, Orlando L, Lubiato L, Leanza S, Guerrato R, Rossetti A, Messina M, Barzetti L, Satta G, Dimonte V (2011) Incidence and severity of oral mucositis in patients undergoing haematopoietic SCT-results of a multicentre study. Bone Marrow Transplant 46(5):727–732. https://doi.org/10.1038/bmt.2010.184

    Article  PubMed  CAS  Google Scholar 

  28. Vera-Llonch M, Oster G, Ford CM, Lu J, Sonis S (2007) Oral mucositis and outcomes of allogeneic hematopoietic stem-cell transplantation in patients with hematologic malignancies. Support Care Cancer 15(5):491–496. https://doi.org/10.1007/s00520-006-0176-9

    Article  PubMed  Google Scholar 

  29. Vera-Llonch M, Oster G, Hagiwara M, Sonis S (2006) Oral mucositis in patients undergoing radiation treatment for head and neck carcinoma. Cancer 106(2):329–336. https://doi.org/10.1002/cncr.21622

    Article  PubMed  Google Scholar 

  30. Wygoda A, Maciejewski B, Skladowski K, Hutnik M, Pilecki B, Golen M, Rutkowski T (2009) Pattern analysis of acute mucosal reactions in patients with head and neck cancer treated with conventional and accelerated irradiation. Int J Radiat Oncol Biol Phys 73(2):384–390. https://doi.org/10.1016/j.ijrobp.2007.12.057

    Article  PubMed  Google Scholar 

  31. Yavuz B, Bal Yilmaz H (2015) Investigation of the effects of planned mouth care education on the degree of oral mucositis in pediatric oncology patients. Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses 32(1):47–56. https://doi.org/10.1177/1043454214554011

    Article  Google Scholar 

  32. Zhu G, Lin JC, Kim SB, Bernier J, Agarwal JP, Vermorken JB, Thinh DH, Cheng HC, Yun HJ, Chitapanarux I, Lertsanguansinchai P, Reddy VA, He X (2016) Asian expert recommendation on management of skin and mucosal effects of radiation, with or without the addition of cetuximab or chemotherapy, in treatment of head and neck squamous cell carcinoma. BMC Cancer 16(1):42. https://doi.org/10.1186/s12885-016-2073-z

    Article  PubMed  PubMed Central  CAS  Google Scholar 

Download references

Acknowledgements

The authors thank MIMS Pte Ltd. for providing medical writing support and editorial support, which was funded by Mundipharma Pte Ltd., Singapore in accordance with Good Publication Practice (GPP3) guidelines (http://www.ismpp.org/gpp3).”

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Jeevendra Kanagalingam.

Ethics declarations

Conflict of interest

Jeevendra Kanagalingam declares honoraria from Mundipharma Pte Ltd. for consultancy as well as writing and reviewing the manuscript. Nicole Bender Moreira received consultation fee for the study design, research material translations, data collection and processing, as well as statistical analysis of the data and reporting. Harsha Arumugam, Stefan Mueller, and Hanlim Moon are employees of Mundipharma Pte Ltd.

Ethical approval

Ethics approval was not needed in the respective countries since this was a non-interventional market research study.

Informed consent

Written informed consent was obtained from all individual participants included in the study prior to completing the face-to-face interviews.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Kanagalingam, J., Wahid, M.I.A., Lin, JC. et al. Patient and oncologist perceptions regarding symptoms and impact on quality-of-life of oral mucositis in cancer treatment: results from the Awareness Drives Oral Mucositis PercepTion (ADOPT) study. Support Care Cancer 26, 2191–2200 (2018). https://doi.org/10.1007/s00520-018-4050-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-018-4050-3

Keywords

Navigation