Children’s Descriptions of Fatigue

Children are able to use expressive descriptors of physical fatigue such as “not being able to ‘run or play with friends’” or looking in a mirror and seeing themselves as a “dull face.” They also describe aspects of emotional fatigue in terms of withdrawing from others, being irritable and feeling “mad” or “sad.”

Researchers exploring fatigue in seriously ill children confirm that perceptions of fatigue differ by developmental age.^6–8 Younger children tend to emphasize the physical sensation of fatigue more than emotional aspects, and describe, for example, how watching television or reading comprise their main activities.

Adolescents tend to be more cognitively aware of the impact of fatigue on their lives, and often describe the symptom in terms of its effect on their lifestyle. They also highlight mental tiredness that alternates and at times merges with the physical sensation of fatigue.^3,7–10 Teens describe activities that they can no longer perform and their inability to be with peers as significant changes brought on by fatigue. They are more aware of the relationship of the symptom to their overall illness or treatment. For example, adolescents can define when fatigue occurs in relation to their chemotherapy cycle.

Research on Fatigue in Children

Research on fatigue in children has focused primarily on children with rheumatologic disorders and cancer. Fatigue is characterized as a distressing, pervasive symptom with physical, mental, and emotional components characterized by a lack of energy.^9,10

Children with juvenile rheumatoid arthritis and systemic lupus erythematous (SLE) describe fatigue as a common symptom.^11,12 In a study of 51 children with juvenile polyarticular arthritis, researchers found fatigue present along with pain and joint stiffness on more than 70% of days with significant variability in symptom levels.¹³ Researchers found a positive relationship between stress and mood and same-day variations in fatigue. A study of 15 children with SLE found fatigue to be a significant symptom in 67% of the children.¹⁴ These children also had reduced aerobic fitness compared to age and sex-matched reference norms. Fatigue was a significant symptom in a group of 52 children with Crohn’s disease.¹⁵ They had lower quality of life scores and significantly more fatigue compared with healthy controls.

Fatigue is the most frequent symptom experienced by children with cancer.^9,10,16–20 In a survey of parents of children with cancer and their treating clinicians, 57% in each group reported fatigue as a frequent symptom.¹⁹ In a qualitative study of children receiving treatment for cancer, researchers generated a detailed description of fatigue: a core concept or energy, a core process or managing dwindling energy, and a typology of three types of fatigue: typical tiredness, treatment fatigue, and shutdown fatigue.¹⁸ Children with leukemia described fatigue, both disease and treatment-related, as having the greatest impact on their quality of life by altering participation in school, sports, and family activities. In a pilot study of nine school-age children with leukemia, diaries revealed evening fatigue and sleep disturbances²¹ during the maintenance phase of treatment. Fatigue was also the most frequently reported symptom in a group of 161 acute lymphocytic leukemia survivors,²² even many years after treatment.

Studies have specifically addressed fatigue at the end of life within the childhood cancer population.²³ A landmark study of symptoms and suffering at the end of life found that all 103 families surveyed report that their child had experienced fatigue during the last month of life.⁴ In a Swedish nationwide survey of 449 parents of children with cancer, 86% reported physical fatigue as the most frequently reported symptom that had moderate or high impact on their child’s well-being.²⁴ A study of 65 parents of children who had died of cancer within the previous 6 to 10 months revealed that fatigue was one of the most frequently reported symptoms, along with pain, and changes in behavior, appearance, and breathing.²⁵ Similar findings were found in 32 parents whose child had died within the past 3 years. They reported that the symptom burden was high during the palliative phase, with pain, poor appetite, and fatigue as the most frequently reported physical symptoms. Emotional symptoms included sadness, difficulty talking about feelings, and fear of being alone.²⁶ Fatigue was a prevalent symptom in a group of 28 Japanese children at the end of life.²⁷ In interviews with 30 parents whose children had received pediatric home hospice services, fatigue was one of the most frequently identified symptoms during the last week of their child’s life²⁸ (Fig. 29-1).

Fig. 29-1 Parents need help with understanding the significant effects fatigue can have on their child.

A qualitative study exploring factors that influence quality of life in 49 children and adolescents with epilepsy found excessive fatigue as a barrier to academic and social pursuits. Participants described how intermittent or continuous fatigue made it difficult to think clearly and to fully participate in classroom learning.²⁹

Fatigue may provide protection, as a shield from suffering, during the final stages of life; and treatment of fatigue at this stage of palliative care may be detrimental.³⁰ When the death of a child is imminent, fatigue often intensifies and withdrawal from family and friends occurs as a result of diminished energy. Preparing the family for this eventuality may prevent their misinterpretation of tiredness as depression, or, even more painful, as a rejection of them (Fig. 29-2).

Fig. 29-2 “Tired.”

Katie, age 10, did her last drawing days before her death from neuroblastoma. She was calm and deliberate, although very weak as she chose these feeling and color matches: tired is medium blue; happy is deep blue; angry is dark green; cruddy is pale blue. Her one comment, spoken quietly with a smile, was: “I wanted to make ‘happy’ bigger, but I am too tired to draw anymore… I am happy with my family.”

(Reprinted with permission from Sourkes, B. Pediatric Palliative Care: An Overview. In INSIGHTS, A Publication of the National Hospice and Palliative Care Organization. Alexandria: 2004).

Assessment of Fatigue

Many patients and families assume that fatigue is an inevitable and untreatable side effect of disease or treatment and thus often do not report it as a symptom. Furthermore, until recently, standardized assessment of fatigue by clinicians has been oversimplified, as a yes or no checklist,⁶ or entirely absent.

Guidelines from the National Comprehensive Cancer Network recommend routine screening for fatigue as the sixth vital sign. Those older than 12 years of age should be screened using a simple numeric rating scale such as 0, no fatigue, to 10, worst fatigue. For children 7 to 12 years of age, a 1 to 5 point scale is recommended. For children aged 5 and 6 years the words tired or not tired should be used to determine fatigue. Once screened, patients should be evaluated for the seven treatable contributing factors to fatigue, which is informally referred to as the gang of seven: anemia, pain, sleep difficulties, nutrition issues, changes in activity patterns, emotional distress, and presence of co-morbidities.^31–33 The health care team should assess for the onset and type of fatigue, aggravating or alleviating factors, and degree of interference with the child’s functioning.

Several research instruments are available to assess symptom clusters in children, including fatigue, although none was designed specifically for end of life. Once fatigue has been identified as a specific symptom it may be useful to use one of the validated and reliable pediatric fatigue scales, such as the Memorial Symptom Assessment Scale (MSAS), Edmonton Symptom Assessment Scale (ESAS), or the Pediatric Quality of Life (PedsQL) scale.³⁴

The Childhood Fatigue Scale (CFS) is a 14-item (four-point Likert scale) questionnaire that asks children (ages 7 to 12 years) about their tiredness during the previous week. The three subscales are: lack of energy, inability to function, and altered mood.^8,35