Mucositis and mouth care

Mucositis is an inflammation of the mucous membranes (linings of the mouth and gut). Mucosal cells replicate rapidly and so like cancer cells they are damaged as a consequence of cytotoxic therapy. Mucositis can occur with or without neutropenia (low neutrophil white blood cell count).

Full national guidelines (CCLG, 2025) are available at the child’s cancer treatment centre: the  PTC (Principal Treatment Centre) and / or POSCU (Paediatric Oncology Shared Care Unit). This includes a quick reference guide in appendix 5 based on systematic reviews and assessment tools in appendices 3 and 4. Updated evidence has resulted in changes to the assessment and treatment of oral complications with some historical methods of care being withdrawn from recommendations. It is vital that community care teams check with the cancer team.
 
The CCLG 2025 Oral Complications Guidelines supplement Mini Mouth Care Matters (NHS, 2019) with specific guidance for children and young people with cancer.

Family education and referral to a specialist paediatric dental team, with notification to the patient’s regular dental team are key points in managing oral complications and preventing long term consequences. Good basic oral hygiene with a soft small headed toothbrush is advised. Sugar containing drinks and food should be avoided at bedtime when saliva flow is reduced and use sugar-free versions of medicines where possible (CCLG, 2025).

Mucositis usually starts five to seven days after cytotoxic chemotherapy treatment and can lead to a delay in the next course of treatment or a reduction in dose, depending on how severe the patient’s experience is.

Table references (CCLG, 2023) (CYPICS Network Nottingham, 2017) (NHS Greater Glasgow and Clyde, 2023)

Mucositis can occur anywhere within the mouth, throat and gastro intestinal tract and symptoms may include bleeding or cracked lips, sore mouth, ulceration, dry mouth, sore throat, difficulty in swallowing including difficulty in swallowing saliva), desquamation (shedding) of mucosa, retrosternal (pain behind the big central chest bone) discomfort, epigastric (around the stomach / upper abdomen / lower ribs area) pain, lower abdominal pain, diarrhoea or constipation (McCulloch et al, 2013). 

Mucositis, also known as stomatitis, can make the tongue and inside of the mouth look pale and white and the tongue may have a scalloped appearance. Regular oral assessment is essential for the proactive and appropriate mouthcare management. There are several available oral assessment tools:

• Eiler’s oral assessment guide (OAG) has been shown to offer structure, rigor and clear guidance (Gibson, et al, 2010, CCLG 2025). Oral assessments should look at all areas on the mouth and be conducted by staff trained in using the tool once daily as a minimum. A dental assessment should be undertaken on diagnosis and then every three to four months by a member of the dental team (Royal College of Surgeons and the British Society for Disability and Oral Health, 2018).  
• Use the Children’s International Mucositis Evaluation Scale (ChIMES) for monitoring mucositis severity, after the Eiler’s assessment identifies oral complications (CCLG, 2025).

Side effects of mucositis and treatment

Oral mucositis can be incredibly painful and may compromise a child or young person’s ability to eat and drink, as well as increasing the risk of developing infection. Assessment of the child or young person’s pain and administration of appropriate pain relief is a priority. The use of opiate pain relief is common, although the introduction of photobiomodulation for prevention of mucositis in cancer centres has been shown to reduce the need for this. Hydration and nutrition may be supported using enteral (nasogastric tubes) or intravenous methods until the side effects are resolved, if the child or young person is unable to eat and drink.

Oral candidiasis may occur at the same time with flakes of white material attached to tongue and insides of mouth. The cancer centre (PTC or POSCU) will advise on prescribing. Nystatin and chlorhexidine are no longer recommended for the prevention of oral mucositis and Nystatin is not recommended for treatment.

Herpes Simplex virus (HSV) may cause extensive ulceration. Further advice should be sought from the cancer centre (PTC or POSCU).

Photobiomodulation (PBM) therapy

There are two methods of photobiomodulation, which is a type of light therapy that helps stimulate healing. PBM is beneficial to children and young people as a preventative measure (CCLG 2025).  

It can be delivered via Low Level Laser Therapy (LLLT), described as the use of red or near-infrared light to stimulate, heal, regenerate and protect tissue that has either been injured, is degenerating, or else risk of dying (NICE, 2018). Another form is Light Emitting Diodes (LED). Both types seem to be effective for prevention and possibly treatment although research is currently limited and needs further study. Choice of PBM is currently dependant on access to equipment at the child’s treating centre.  

Patient information advice: Mouth care for children and young people with cancer

Verbal information supported by written information should be provided to empower families and improve understanding and compliance.

Nurses play a key role in ongoing oral care education and should receive continuing training, ideally in collaboration with dental professionals. 

Oral care at time of cancer diagnosis 

• All children should have a dental assessment at diagnosis via a specialist paediatric dentist, ideally before treatment begins. 
• Any necessary invasive dental treatment should be carried out by a consultant or specialist paediatric dentist. 
• The routine dental care provider should be informed of the cancer diagnosis and care arrangements. 
• Treatment directed from the specialist dental team should be communicated to the child’s General Dental Practitioner (GDP).  
• Oral assessment training should be available within the cancer centre.

Oral Hygiene During Cancer Treatment 

• Oral hygiene advice should be given verbally and in writing before treatment starts.
• Advice should be delivered by a trained dental, medical, or nursing team member.
• Children should brush twice daily with fluoride toothpaste (1,000 ppm fluoride ±10%).
• Use a soft toothbrush with a small head if the mouth is sore.
• If toothbrushing becomes intolerable or spontaneous bleeding occurs before or during mouthcare, other options should be explored via the cancer treatment centre. 
• Toothbrushes should be replaced every 3 months, after an oral infection or when bristles begin to splay.
• When used, dummies should be changed frequently, especially following a mouth infection. These should be sterilised frequently, ensuring there are replacements to hand. If possible, parents/carers should be encouraged to wean their child off a dummy.
• Flossing and fluoride supplements should only be used if recommended by a dental professional. The correct amount of fluoride will be advised by the dental team.

Dental and oral care during and after treatment 

• Dental assessments every 3–4 months during treatment. 
• Post-treatment, children should return to their routine dental provider, who should be informed of any special care needs, due to the risk of dental development anomalies. 
• Long-term monitoring of oral and dental health is essential during growth and development. 

Taste alteration

Children and young people receiving cytotoxic chemotherapy, and who may also have mucositis, frequently experience taste alterations due to damage to the taste buds and salivary glands, which in turn can affect their dietary intake (Selwood, 2008).  Some patients report a metallic taste in their mouth or an inability to taste anything, whilst others crave spicy or strong-tasting food, e.g. salt and vinegar crisps.  

Low sugar sweets, such as mints, may be given in moderation during chemotherapy administration, which may help alleviate or lessen the symptoms. 

Taste alteration can result in a loss of appetite leading to reduced nutritional status. It is important that parents/carers are pre- warned this may happen so they can manage the situation, understanding that it is not the child or young person being fussy. A dietitian will be available if parents/carers and patients need further advice or support.

References

Alves AS, Kizi G, Barata AR, Mascarenhas P, Ventura I. (2012) Oral complications of chemotherapy on paediatric patients with cancer: A systematic review and meta-analysis. Medical sciences forum 5(1) https://doi.org/10.3390/msf2021005025  

CCLG: The Children & Young People’s Cancer Association (2025) CCLG Recommendations for the prevention and Management of Oral Complications in Children and Young People with Cancer Version 2: August 2025 Available at: https://app.sheepcrm.com/cclg/treatment-guidelines/supportive-care/oral-complications/ (Last accessed 10th December 2025

CCLG: The Children & Young People’s Cancer Association (2023)  Mouthcare and Mucositis in Children Guide   Available at:  https://www.cclg.org.uk/about-cancer/information-resources/publications/mouthcare-and-mucositis  (Last Accessed 24th July 2025)

CCLG: The Children & Young People’s Cancer Association): Supportive Care SIG (2025) CCLG Guideline for the Management of Chemotherapy Induced Nausea and Vomiting (CINV) Available via CCLG Members in all UK Children & Young People’s Cancer Centres and Shared Care Units at: https://app.sheepcrm.com/cclg/treatment-guidelines/supportive-care/cinv/ (Last Accessed 24th July 2025) Available via the local cancer team.

CYPICS Network Guideline (Nottingham Children's Oncology Unit). (2017) Mucositis in Chemotherapy UHL Children’s Hospital Guideline Not publicly available – secure library Leicestershire Hospitals NHS https://secure.library.leicestershospitals.nhs.uk/PAGL/Shared%20Documents/CYPICS%20Mucositis%20in%20Chemotherapy%20UHL%20Childrens%20Hospital%20Guideline.pdf

Gibson F, Auld EM, Bryan G, Coulson S, Craig J, Glenny A.M.  (2010) A systematic review of oral assessment instruments. What can we recommend to practitioners in children’s and young people’s cancer care? Cancer Nursing 33(4) E1-E19 July DOI: 10.1097/NCC.0b013e3181cb40c0

McCulloch R, Hemsley J, Kelly P (2013) Symptom management during chemotherapy Paediatrics and Child Health 24:4 pp166-177 Available at: https://www.paediatricsandchildhealthjournal.co.uk/article/S1751-7222(13)00261-8/abstract Last Accessed 24th July 2025

NHS Greater Glasgow and Clyde (NHSGGC) (2023) Paediatric Guidelines: Mucositis – diagnosis and treatment   Available at: https://clinicalguidelines.scot.nhs (Last Accessed 24th July 2025)

NICE: National Institute for Health and Care Excellence. (2018) Low-Level Laser Therapy for preventing or treating oral mucositis caused by radiotherapy or chemotherapy. Published 23 May 2018 Available at: https://www.nice.org.uk/guidance/ipg615 (Last Accessed 24th July 2025)

Royal College of Surgeons and the British Society for Disability and Oral Health (2018) The Oral Management of Oncology Patients Requiring Radiotherapy, Chemotherapy and / or Bone Marrow Transplantation: Clinical Guidelines  Available at: https://www.rcseng.ac.uk/-/media/files/rcs/fds/publications/rcs-oncology-guideline-update--v36.pdf (Last Accessed 24th July 2025)

Selwood, K. (2008) Side Effects of Chemotherapy: Taste Alteration Ch 4 p. 42-43 In Gibson, F. & Soanes, L. (2008) Cancer in Children and Young People Wiley  London

NHS England (2019) Mini Mouth Care Matters: A guide for hospital healthcare professionals. Available at: https://learninghub.nhs.uk/catalogue/mini-mouth-care-matters  (Accessed: 11 December 2025)

Page last updated December 2025

Page last updated July 2025