Mucositis and mouth care

Oral complications are a common side effect of cytotoxic anti-cancer treatment (including chemotherapy, radiotherapy and some immunotherapies). It is well recognised as negatively impacting the quality of life of children and young people with cancer (Alves, et al, 2012). 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).

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). 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).

Side Effects of Mucositis

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 a person’s pain and administration of appropriate pain relief is a priority. The use of opiate pain relief is common. 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. Candida oesophagitis rarely occurs but if it does, it is usually treated with systemic antifungals such as Fluconazole or Ambisome.

Herpes Simplex virus (HSV) may cause extensive ulceration and is usually treated with Aciclovir. Further advice should be sought from the haematology/oncology consultant.

Treatment for mucositis

This will be initiated by the patient’s treatment centre (Principal Treatment Centre -PTC, or Paediatric Oncology Shared Care Unit – POSCU) following a toxicity assessment. Community professionals should seek advice from the treatment centre on management and dosing.

Actions most likely to be taken:

1. Swabs for bacteriology and virology
2. Regular pain relief as appropriate.
3. Agents to consider should always be under the guidance of a paediatric clinician / advanced clinical practitioner or dentist familiar with the child’s treatment plan:
   1. Difflam mouthwash or spray for analgesia, but may not be appropriate for all ages
   2. Gelclair
   3. Omeprazole for epigastric pain
   4. Gaviscon and sucralfate may be tried.
   5. Fluconazole can be given for oral candidiasis but check if Vincristine has been given within the last five days as there is an interaction between both drugs.
   6. Generally, Buscopan is not prescribed for colicky lower abdominal pain, partly as it is rarely effective and also to avoid the rare complication of toxic megacolon if the patient has colitis.
4. Fluid management should be carefully considered.
5. TPN may be used in severe mucositis.
6. Nausea or vomiting commonly accompanies mucositis in a cluster of post chemotherapy symptoms. The treating clinicians will use the latest national Chemotherapy Induced Nausea and Vomiting Guidelines (CCLG, 2025). Mucositis frequently accompanies the delayed nausea phase (which occurs 24 hrs to 5 days after the last doses of chemotherapy). Anti-emetics appropriate to this phase are likely to be most effective; Aprepitant (or Fosaprepitant), Dexamethasone (if not currently prescribed as part of anti-cancer treatment protocol), or Olanzapine / Levomepromazine.
7. Use of Photobiomodulation for symptom relief (see below). This may also be used for prevention in patients at risk of mucositis.
8. Surgical review should be obtained for significant lower abdominal pain, especially right iliac fossa pain which could be typhlitis, and to rule out appendicitis. Typhlitis, or neutropenic enterocolitis, is well recognised in immunosuppressed and neutropenic patients.
9. Surgical review should be obtained for bile-stained vomiting.
10. Anti-diarrhoeal preparations, e.g. loperamide are not recommended.

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 or in treatment to alleviate symptoms of mucositis (NICE, 2018)

It can be delivered via Low Level Laser Therapy (LLLT), described 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 treatment although research is currently limited. Choice of PBM is currently dependant on access to equipment at the child’s treating centre

Parents/carers are advised that sugary snacks should be limited to mealtimes and milk and water should be the preferred drinks offered. However, it must be recognised that this may be very difficult for parents/carers if the only food or drink their child craves during treatment is sweet, especially if they are struggling to maintain their weight. Support and advice regarding nutrition is available from the dietitian and ward staff to help parents/carers be creative when encouraging their child to eat or drink healthier options.

Mouth care

Patient Information Advice: Mouth Care for Children and Young People with Cancer

Oral Care at Time of Cancer Diagnosis

• All children should have a dental assessment at diagnosis, ideally before treatment begins.
• The assessment should be done by a paediatric dentist or dental hygienist.
• Any necessary dental treatment should be carried out by a consultant or specialist paediatric dentist.
• Children should be registered with a General Dental Practitioner (GDP) and maintain this registration throughout and after treatment.
• The routine dental care provider should be informed of the cancer diagnosis and care arrangements.
• 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, e.g. a soft gauze swab wrapped round a finger. Parents/carers can seek advice from their Paediatric Oncology Outreach Nurse Specialist (POONS) or ward staff.
• Toothbrushes should be replaced every 3 months, after an oral infection or when bristles begin to splay.
• For babies or children unable to brush, use moistened oral sponges (with water or diluted chlorhexidine).
• 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
• Minimise amount and frequency of consumption of sugar-containing food and drinks and avoid high sugar food and drinks at bedtime when saliva flow is reduced.

Dental/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.
• Long-term monitoring of oral / dental health is essential during growth and development.

Patient Empowerment and Education

• Information leaflets should be provided to empower families and improve understanding and compliance. https://www.cclg.org.uk/about-cancer/information-resources/publications/mouthcare-and-mucositis
• Nurses often play a key role in ongoing oral care education and should receive continuing training, ideally in collaboration with dental professionals.

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.

Page last updated July 2025