- Introduction to oral mucositis and quality of life
- Symptoms of oral mucositis which may affect quality of life
- Impact on quality of life
- Addressing quality of life issues
Mucositis is a condition where the mucous membranes of the mouth develop painful lesions, which in severe cases can prevent an individual from eating or talking. Mucositis is caused by radiation or chemotherapy.
The condition varies in severity and depends on the dose of chemo or radiation therapy and location of the cancer. Almost all patients receiving chemo or radiation therapy for cancers of the head and neck will develop mucositis, as will a significant proportion of those receiving treatment for cancers affecting other parts of the body. The condition has serious implications for an individual’s quality of life (QOL).
In relation to health, QOL is to the extent an individual perceives they are able function in a normal and healthy manner. It includes physical, emotional, social and functional well-being. It is a subjective and multidimensional concept, which varies both in nature and extent according to disease symptoms and an individual’s experiences of them. As a result, it is difficult to quantify QOL, and measure the impact of various conditions (e.g. mucositis) and their side effects on it.
Oral mucositis results in many, often serious, symptoms, which may influence different aspects of an individual’s QOL. These include:
- Pain: the most common and troublesome side effect of mucositis and often so severe that it makes it difficult or impossible for a person to:
- Swallow; and/or
- Hoarse voice;
- Need to dedicate substantial time to oral hygiene regimes; and
- Difficulty breathing which in severe cases may require the insertion of a tracheostomy tube to assist breathing.
For a long time, health professionals have recognised that mucositis adversely affects QOL, however it is only recently that research studies have been conducted to develop evidence about the ways and extent to which it does so. Because so many individuals being treated for cancer develop mucositis, it is sometimes difficult to separate the effects of mucositis on QOL, from the effect of the cancer treatment more generally. However, recently questionnaires have been designed to examine how the specific side effects of mucositis (as opposed to the general side effects of cancer treatment) affect QOL. These studies have consistently shown an association between increasing mucositis severity and decreasing QOL in terms of functional aspects (e.g. speaking). They also suggest that mucositis effects physical, social and emotional aspects of QOL.
Determining how the side effects of mucositis affect an individual’s QOL, both in the short and long term, is an important step in providing appropriate cancer therapy, which considers the individual’s needs broadly, and not only in relation to survival. The importance of various aspects of QOL (e.g. pain, social interaction) vary significantly between individuals. Being able to consider the ways in which various treatments may affect different aspects of a person’s QOL, is an important part of enabling individuals to make decisions regarding their various treatment options (e.g. high vs. low dose regimes).
The lesions to the oral mucosa which characterise mucositis can be extremely painful and prevent a person from eating, drinking and speaking. Collectively these symptoms have significant implications for a patient’s QOL and other aspects of health including nutritional status. Some patients are withdrawn from treatment, or have their dose reduced, because of mucositis. Oral mucositis also increases the risk of some other health conditions, in particular infections. The ill health associated with these conditions can further reduce a patient’s QOL.
Oral mucositis considerably increases the cost of being treated for cancer. Mucositis may increase the cost of the cancer treatment itself (e.g. because it prolongs treatment or requires more specialist visits) and there are also increased costs associated with treating mucositis (e.g. pain relief) and its associated health problems (e.g. malnutrition, infection).
If components of the mucositis treatment are not covered by health insurance, individuals can carry a considerable extra financial burden because of the additional treatment required for mucositis. Even if all the direct medical costs are covered by health insurance, a person with mucositis or their relatives may be out of pocket because of travel or needing to take additional time off work. This can add lead to stress and anxiety.
Mucositis has a number of potential social consequences, mainly because it affects a person’s ability to speak and communicate. This significantly reduces their ability to interact in social settings, including everyday social settings like family meals. This may have damaging effects on the individual’s relationships with others. Individuals with mucositis may have to develop alternative means of communicating (e.g. writing things down) for periods of time.
To minimise social isolation, it is important that the friends and family of an individual with mucositis are educated about the reasons for mucositis developing, its side effects and are supportive and empathetic to the individual with mucositis.
The complex oral hygiene routines associated with mucositis treatment may also affect the individual’s social life, as they are time consuming and the time spent on mouth care might otherwise be spent doing more enjoyable things such as socialising with family.
Coping with the side effects of oral mucositis is challenging and many patients experience emotional side effects including anxiety, distress, and depression. Individuals who do complete their cancer treatment may feel that the ordeal was not worthwhile, given the severity of side effects.
Mucositis is associated with poor nutrition, which can have devastating effects on health and treatment outcomes and effect QOL through ill health or prolonged treatment. However, the factors which underlie poor nutrition in individuals with mucositis, that is difficulty eating and swallowing and finding food unpalatable, also give rise to emotional QOL issues. A study of South Australian cancer patients with mucositis reported that they found their inability to eat distressing, because they associated eating with recovery.
Oral mucositis can have such a severe impact on a person’s QOL that treatment is withdrawn or disrupted, or the dose lowered, to allow the oral mucosa to heal. This seriously impacts on prognosis and therefore the individual’s future QOL. Cancer treatment induces numerous side effects which affect the patient’s comfort and QOL for the duration of treatment. As treatment is extended in cases of disruption, the individual experiences all the QOL issues associated with the therapy itself (including but not limited to oral mucositis), for a longer period of time. Treatment may also not be as effective, meaning that individuals will suffer greater cancer related ill health and the QOL issues associated with being sick from cancer.
Health professionals, particularly nurses, play an important role in helping individuals cope with the symptoms of mucositis and tolerate the cancer treatment that causes it.
Health professionals will probably monitor individuals receiving cancer treatment for signs of mucositis in the early stages of treatment, so that they can begin treating the condition as soon as it develops. This is a crucial step in reducing the severity of symptoms and improving QOL.
Nurses and other health professionals also play a broader role in supporting people with mucositis and encouraging them to persist with treatment despite the symptoms. They are also able to educate patients and their families about mucositis.
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