Fatigue in childhood chronic disease

Vlist, Merel M. Nap-van der; Dalmeijer, Geertje W.; Grootenhuis, Martha A.; Ent, Cornelis K. van der; Heuvel‐Eibrink, Marry M. van den; Wulffraat, Nico; Swart, Joost F.; Litsenburg, Raphaële R. L. van; Putte, Elise M. van de; Nijhof, Sanne L.

doi:10.1136/archdischild-2019-316782

Cited by 41 publications

(76 citation statements)

References 33 publications

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“…The longer actigraphic sleep times are probably favorable for physical recovery in this treatment phase and may result from cancer-related fatigue, a common side-effect of cancer treatment. 49 However, more sedentary behavior has been associated with adverse health outcomes, such as a higher cardiovascular risk and an unfavorable body composition. 50 In adult cancer patients, sedentary behavior has also been associated with an increased risk of cancer-specific mortality.…”

Section: Discussionmentioning

confidence: 99%

High prevalence of parent‐reported sleep problems in pediatric patients with acute lymphoblastic leukemia after induction therapy

Steur

Grootenhuis

Someren

et al. 2020

Pediatric Blood & Cancer

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Objective To assess sleep problems (prevalence and predictors) in pediatric patients with acute lymphoblastic leukemia (ALL) after the most intensive phase of therapy (induction). Methods Patients (≥2 years) treated according to the Dutch ALL‐11 protocol were included. Sleep was measured using parent‐reports and self‐reports (Children's Sleep Habits Questionnaire; CSHQ) and actigraphy. Parental sleep (Medical Outcome Study Sleep Scale) and distress and parenting problems (Distress Thermometer for Parents) were assessed with questionnaires. Z‐scores were calculated for total CSHQ scores using age‐appropriate scores of healthy Dutch children. The prevalence of sleep problems (defined as a Z‐score > 1) in patients with ALL was compared to healthy children (chi‐square tests). Actigraphic sleep estimates were collected in healthy Dutch children (n = 86, 2‐18 years) for comparison with patients (linear regression). Determinants of parent‐reported child sleep (total CSHQ Z‐score) were identified with regression models. Results Responses were collected for 124 patients (response rate 67%), comprising 123 parent‐reports, 34 self‐reports, and 69 actigraphy assessments. Parents reported sleep problems in 38.0% of the patients compared to 15.2% in healthy children (P < .001). Patients reported fewer sleep problems themselves: 12.1% compared to 15.8% in healthy children (P = .33). Total time in bed (B (95% CI): 22.89 (9.55‐36.22)) and total sleep time (B (95% CI):16.30 (1.40‐31.19)), as derived from actigraphy, were significantly longer in patients. More parent‐reported child sleep problems were predicted by parenting problems, more parental sleep problems, bedroom sharing, and child's sleep medication use (explained variance: 27.4%). Conclusions Systematic monitoring of child and parental sleep and implementation of effective interventions may be a gateway to improve quality of survival in pediatric ALL.

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Section: Discussionmentioning

confidence: 99%

High prevalence of parent‐reported sleep problems in pediatric patients with acute lymphoblastic leukemia after induction therapy

Steur

Grootenhuis

Someren

et al. 2020

Pediatric Blood & Cancer

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“…Cancer-related fatigue is one of the most common side effects of anticancer treatments, and increased severity has been described during dexamethasone treatment [20][21][22]. Cancer-related fatigue is a disabling symptom that often continues after cessation of treatment [23]. It impairs school functioning and reduces the ability to participate in social roles and activities [24,25].…”

Section: Introductionmentioning

confidence: 99%

The impact of maintenance therapy on sleep-wake rhythms and cancer-related fatigue in pediatric acute lymphoblastic leukemia

Steur

Kaspers

Someren

et al. 2020

Support Care Cancer

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Purpose To assess the impact of maintenance therapy and the additional impact of dexamethasone treatment on cancer-related fatigue and sleep-wake rhythms in pediatric acute lymphoblastic leukemia (ALL) patients and to determine the association between these outcomes. Methods A national cohort of pediatric ALL patients (≥ 2 years) was included (± 1 year post-diagnosis). Patients receiving dexamethasone were assessed twice (assessment with and without dexamethasone). Actigraphy assessments were used to calculate sleep-wake outcomes with nonparametric methods. Cancer-related fatigue was assessed with the PedsQL Multidimensional Fatigue Scale. Sleep-wake rhythms and cancer-related fatigue were compared between patients participating in the assessment without dexamethasone and healthy children (linear regression) and between assessments with and without dexamethasone (mixed models). Using linear regression, associations between sleep-wake outcomes and cancer-related fatigue were determined during assessments with and without dexamethasone. Results Responses were collected for 125 patients (113 assessments with and 81 without dexamethasone). The sleep-wake rhythm was less stable (p = 0.03) and less robust (p = 0.01), with lower physical activity levels (p < 0.001) and higher cancerrelated fatigue levels (p < 0.001) in ALL patients compared to healthy children. Physical activity was lower (p = 0.001) and cancer-related fatigue more severe (p ≤ 0.001) during assessments with dexamethasone compared to without dexamethasone. Sleep-wake outcomes were significantly associated with cancer-related fatigue during periods without dexamethasone, but not during periods with dexamethasone. Conclusion Sleep-wake rhythms are disturbed, physical activity levels lower, and cancer-related fatigue levels higher during maintenance therapy. Interventions aimed to enhance sleep-wake rhythms during maintenance therapy could improve cancerrelated fatigue. Families should be supported in coping with the additional burden of dexamethasone treatment to improve wellbeing of ALL patients.

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“…Participaram do estudo onze crianças/adolescentes, seis entre 7 e 11 anos, a maioria do sexo feminino (7) e com doenças hematológicas (8).…”

Section: Resultsunclassified

“…Dentre os sinais e sintomas vivenciados, os mais comuns em crianças e adolescentes são: fadiga, dor, náuseas, alterações no padrão de sono, preocupação e tristeza [7][8][9][10][11] , interferindo negativamente em sua qualidade de vida 12 .…”

Section: Introductionunclassified

Convivendo com múltiplos sintomas: a experiência de crianças e adolescentes com condição crônica [Living with multiple symptoms: the experience of children and adolescents with chronic condition] [Vivir con múltiples síntomas: la experiencia de niños y adolescentes con condición crónica]

et al. 2020

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Objetivo: compreender como é a experiência da criança/adolescente de conviver com sintomas de uma condição crônica. Método: abordagem qualitativa, utilizando como referencial a Teoria Fundamentada nos Dados. Os participantes foram 11 crianças e adolescentes de seis a 18 anos incompletos hospitalizados em um hospital estadual universitário. Como instrumentos de coleta de dados, utilizou-se a entrevista semiestruturada e a técnica “draw, write and tell”. As entrevistas foram audiogravadas e transcritas, e a análise seguiu os passos do referencial. Resultados: apreendeu-se a categoria “Tendo que conviver com os sintomas”, que engloba cinco subcategorias que apresentam sintomas físicos, emocionais e gerais, a convivência com a multiplicidade de sintomas simultâneos e as consequências de se conviver com eles. Conclusão: a convivência com diversos sintomas leva a limitações. A enfermagem precisa favorecer a expressão das vivencias das crianças/adolescentes, minimizando situações de estresse e melhorar o gerenciamento dos sintomas, através do planejamento de estratégias individualizadas.ABSTRACTObjective: to comprehend children’s or adolescents’ experiences of living with symptoms of a chronic condition. Method: on a qualitative approach, taking Grounded Theory as a frame of reference and 11 children and adolescents aged 6 to 18 years hospitalized in a state university hospital as participants, data were collected by semi-structured interview using the “draw, write, and tell” technique. The interviews were recorded and transcribed, and then analyzed following the steps of Grounded Theory. Results: analysis identified the category “Having to live with symptoms”, which comprised 5 subcategories featuring physical, emotional and general symptoms, the experience of living with multiple simultaneous symptoms, and the consequences of living with them. Conclusion: living with several symptoms entails limitations. Nursing needs to favor children’s and adolescents’ expressions of their experiences in order to minimize stressful situations and improve symptom management by planning individualized strategies.RESUMENObjetivo: comprender las experiencias de niños o adolescentes de vivir con síntomas de una enfermedad crónica. Método: con un enfoque cualitativo, tomando como marco de referencia la Teoría Fundamentada y como participantes a 11 niños y adolescentes de 6 a 18 años hospitalizados en un hospital universitario estatal, los datos se recolectaron mediante entrevista semiestructurada utilizando el método “dibujar, escribir y decir ”técnica. Las entrevistas fueron grabadas y transcritas, y luego analizadas siguiendo los pasos de Grounded Theory. Resultados: el análisis identificó la categoría “Tener que vivir con síntomas”, que comprendía 5 subcategorías que presentaban síntomas físicos, emocionales y generales, la experiencia de vivir con múltiples síntomas simultáneos y las consecuencias de vivir con ellos. Conclusión: vivir con varios síntomas conlleva limitaciones. La enfermería debe favorecer la expresión de las experiencias de los niños y adolescentes para minimizar las situaciones estresantes y mejorar el manejo de los síntomas mediante la planificación de estrategias individualizadas.

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Fatigue in childhood chronic disease

Cited by 41 publications

References 33 publications

High prevalence of parent‐reported sleep problems in pediatric patients with acute lymphoblastic leukemia after induction therapy

High prevalence of parent‐reported sleep problems in pediatric patients with acute lymphoblastic leukemia after induction therapy

The impact of maintenance therapy on sleep-wake rhythms and cancer-related fatigue in pediatric acute lymphoblastic leukemia

Convivendo com múltiplos sintomas: a experiência de crianças e adolescentes com condição crônica [Living with multiple symptoms: the experience of children and adolescents with chronic condition] [Vivir con múltiples síntomas: la experiencia de niños y adolescentes con condición crónica]

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