Childhood chronic illness

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Childhood chronic illness refers to conditions in pediatric patients that are usually prolonged in duration, do not resolve on their own, and are associated with impairment or disability.[1] The duration required for an illness to be defined as chronic is generally greater than 12 months, but this can vary, and some organizations define it by limitation of function rather than a length of time.[2] Regardless of the exact length of duration, these types of conditions are different than acute, or short-lived, illnesses which resolve or can be cured. There are many definitions for what counts as a chronic condition. However, children with chronic illnesses will typically experience at least one of the following: limitation of functions relative to their age, disfigurement, dependency on medical technologies or medications, increased medical attention, and a need for modified educational arrangements.[3]

There are many different diseases affecting children that have a prolonged course and can lead to disability or impairment including asthma, sickle cell anemia, congenital heart disease, obesity, neurodevelopmental conditions, and epilepsy. Owing to improvements in public health and health infrastructure, infant and child mortality especially from infectious causes has decreased in most areas of the world.[4] Therefore, children are living longer with chronic illnesses.

Epidemiology

It is difficult to know the exact number of children who have a chronic illness worldwide. Given that there is no agreement on the definition for a chronic illness and that quality data from every country is not guaranteed, there is a wide range of estimates of prevalence and incidence. In the United States, one study noted the prevalence of chronic conditions among youth more than doubled from 12.8% in 1994 to 26.6% in 2006.[5] One important trend to consider is that the overall number of children with chronic illnesses is increasing. This rise is likely due to decreased infant and child mortality from previously lethal diseases due to innovations in medication and other treatment as well as increased ability to diagnose and therefore discover chronic conditions.[citation needed]

Management

Taking care of a child with a chronic illness will require a team of providers that may include medical providers, therapists, educator, and other caregivers.

Psychosocial

Coping with a chronic illness can challenge many aspects of life, and there are some therapies that can help children and their families adjust to their condition. Programs that focus specifically on parenting include increasing positive interaction between parent and child, and better communication about emotions.[6] Therapies that can help children improve their condition and manage the stress associated with having a chronic illness include behavioral therapy and cognitive behavior therapy.

Behavior therapy in the setting of chronic illnesses aims to change learned behaviors that are problematic using classical conditioning and operant techniques. Some examples of behavioral therapy for children with asthma include stress management techniques and contingency coping exercises. In one study, the asthma patients randomized to such therapies demonstrated fewer behavioral adjustment problems.[7] Additionally, systematic desensitization can be applied to children with illness to decrease the fear associated with some medical treatments that could be required of their condition such as imaging or invasive procedures.[8]

Cognitive Behavioral Therapy (CBT) is one of the most common techniques used to build resilience in children with chronic illnesses. CBT includes the practice of breathing exercises, relaxation training, imagery, distraction methods, coping models, cognitive coping skills, reinforcement for compliance, behavioral rehearsal, role-play and direct coaching.[9] Another intervention that is gaining popularity is the PASS Theory of Intelligence. The PASS Model combines a multitude of interventions to create a well-rounded program to foster resiliency in not only the children but the families affected as well. The goals of the pass model are to minimize trauma symptoms, develop adaptive coping skills, strengthen resiliency, and connect families to support networks.[10]

Diet

Nutrition is a crucial part of managing many chronic conditions in children. Many chronic illnesses increase children's risk of developing growth complications due to increased inflammation and other pathological processes specific to each disease[11][12]. Inflammation is one of the main drivers of growth failure and malnutrition in children with chronic illnesses because it decreases caloric intake and increases both energy demands and energy losses.[11][12]. Consequently, children can experience food aversion, intolerance, malabsorption, and loss of lean muscle and fat[11][12].

The specific management of nutrition varies depending on the patient and their disease. The goal of treatment is to increase energy intake to match the increased energy needs and to supplement nutrient deficiencies[11]. General guidelines for treatment include regular monitoring of growth and development, checking nutritional status, addressing issues with food intake, reviewing medications and supplements, referral to a specialist and assessment of food insecurity [12]. Nutrition management is essential for many children with chronic diseases because poor nutrition is associated with worse treatment responses, development of comorbidities, and lowered survival in some cases[12].  

Transition to Adult Care

The transition from pediatric and family-centered care to adult-centered care is an area of management that has recently gained importance due to the increased prevalence of chronic diseases and lengthened life expectancy in children with chronic conditions. This transition is an ongoing area of research, and better data is still needed to assess the effectiveness of different models of transition[13].

The transition process is multifactorial and depends on patients' goals, family preferences, cultural differences, and the patient's condition. Guidelines on conducting this process vary amongst countries and healthcare institutions. Most guidelines from countries where western medicine is practiced have similarities. For example, early planning is often desirable to allow enough time for the transition and to decrease potential adverse outcomes and the need for acute care[13]. A systematic approach that provides good communication between providers, patients, and families is preferred[13]. Most importantly, providers and parents should encourage self-managing of care as the child develops a stronger desire for autonomy and independence[13].

Outcomes

Development

Chronic illness can affect a child's development at any stage. During infancy and childhood chronic illness can be detrimental to the development of secure attachment, interpersonal trust, self-regulation, and/or peer relation skills. During middle adolescence, chronic illness can prevent a child from being in school on a regular basis. This can affect a child's academic and social competence. During adolescence, chronic illness can affect the development of autonomy and self-image. It can also interfere with peer and romantic relationships, and the desire for independence can lead to poor treatment compliance.[14] Stress coping methods significantly influence how well children with chronic illnesses emotionally and behaviorally develop and adjust to their illness.[15] In terms of education, one study found that children in Australia with at least one chronic illness scored lower in five domains of educational readiness including social competence, emotional maturity and communication skills.[16] Childhood chronic illnesses are common among school-aged children in the United States, and these illnesses often require management within school settings for a child to safely attend.[17] At any stage, children with chronic illness can have reduced quality of life, especially if the children or their families are of low socioeconomic status.[18][19] Malnutrition is a greater risk among children with chronic illnesses, and children's physical and cognitive development may be poorly impacted, such as abnormal immune system regulation and decreased IQ scores.[20]

Adulthood

Childhood chronic illnesses and their sequelae persist into adulthood, such as in the case of asthma or diabetes.[21][22] Despite management of individual diseases, a diagnosis of chronic childhood disease generally does not resolve upon growth into adulthood. Relatedly, experiencing a childhood chronic illness may lead to financial hardships later in life, as shown in childhood cancer survivors.[23]

Society and Culture

Impact on family members and caregivers

The presence of a child with a chronic illness in the home has multiple effects on the family's life as it may affect daily routines. One potential consequence is the physical space inside the home being altered by the need for home health or medical equipment. As such children typically require frequent appointments, caregivers can feel strain to participate in their other children's lives equally and may develop increased levels of stress and family discord.[24] Caregivers report lower physical and psychological quality of life, and coping strategies are important in improving psychological quality of life, just as it is for the ill children themselves.[25] Healthy siblings of children with a chronic illnesses can have negative experiences and emotions, including withdrawal, overwhelm, and isolation even when social support is present. Child life specialists and health professionals must provide additional support to facilitate proper psychosocial adjustment among healthy siblings, as they already do for ill children.[26] The time requirements could also increase social isolation from extended family members.[27] Given the cost associated with the greater need for specialized treatments as well as decreased time to work, these families may also experience economic difficulties.[28]

Societal Impact

Childhood chronic illnesses can have large-scale implications for societies. One to two percent of healthcare budgets in developed countries is spent on asthma, the most common childhood chronic illness.[29] While not specific to childhood disease, the CDC reports that 90% of the U.S. national spending on healthcare goes to chronic diseases broadly.[30]

References

  1. ^ Stanton, Annette L.; Revenson, Tracey A.; Tennen, Howard (2007). "Health psychology: psychological adjustment to chronic disease". Annual Review of Psychology. 58: 565–592. doi:10.1146/annurev.psych.58.110405.085615. ISSN 0066-4308. PMID 16930096.
  2. ^ Perrin, James M.; Bloom, Sheila R.; Gortmaker, Steven L. (27 June 2007). "The increase of childhood chronic conditions in the United States". JAMA. 297 (24): 2755–2759. doi:10.1001/jama.297.24.2755. ISSN 1538-3598. PMID 17595277.
  3. ^ Primary care of the child with a chronic condition. Allen, Patricia Jackson., Vessey, Judith A., Schapiro, Naomi A. (5th ed.). St. Louis: Elsevier/Mosby. 2010. ISBN 978-0-323-05877-3. OCLC 373479661.{{cite book}}: CS1 maint: others (link)
  4. ^ Lantto, Marjo; Renko, Marjo; Uhari, Matti (2013). "Changes in infectious disease mortality in children during the past three decades". The Pediatric Infectious Disease Journal. 32 (9): e355–359. doi:10.1097/INF.0b013e3182930694. ISSN 1532-0987. PMID 23538525. S2CID 24827747.
  5. ^ Van Cleave, Jeanne (17 February 2010). "Dynamics of Obesity and Chronic Health Conditions Among Children and Youth". JAMA. 303 (7): 623–30. doi:10.1001/jama.2010.104. ISSN 0098-7484. PMID 20159870.
  6. ^ Kaminski, Jennifer Wyatt; Valle, Linda Anne; Filene, Jill H.; Boyle, Cynthia L. (2008). "A meta-analytic review of components associated with parent training program effectiveness". Journal of Abnormal Child Psychology. 36 (4): 567–589. doi:10.1007/s10802-007-9201-9. ISSN 0091-0627. PMID 18205039. S2CID 207155947.
  7. ^ Perrin, J. M.; MacLean, W. E.; Gortmaker, S. L.; Asher, K. N. (1992). "Improving the psychological status of children with asthma: a randomized controlled trial". Journal of Developmental and Behavioral Pediatrics. 13 (4): 241–247. doi:10.1097/00004703-199208000-00001. ISSN 0196-206X. PMID 1506461. S2CID 9618651.
  8. ^ Harbeck-Weber, Cynthia (2003). Promoting Coping and Enhancing Adaptation to Illness. The Guilford Press. pp. 99–118. ISBN 978-1572309067.
  9. ^ Wenar, Charles, 1922- (2011). Developmental psychopathology : from infancy through adolescence. Kerig, Patricia. (5th ed.). Maidenhead, Berkshire: McGraw Hill. ISBN 978-0-07-713745-8. OCLC 756486438.{{cite book}}: CS1 maint: multiple names: authors list (link) CS1 maint: numeric names: authors list (link)
  10. ^ Morison, Jillian E.; Bromfield, Leah M.; Cameron, Heather J. (2003). "A Therapeutic Model for Supporting Families of Children with a Chronic Illness or Disability". Child and Adolescent Mental Health. 8 (3): 125–130. doi:10.1111/1475-3588.00058. ISSN 1475-357X. PMID 32797558.
  11. ^ a b c d Ursula G., Kyle; Shekerdemian, Lara S.; Coss-Bu, Jorge A. (2015). "Growth Failure and Nutrition Considerations in Chronic Childhood Wasting Diseases". Nutrition in Clinical Practice. 30 (2): 227–238. doi:10.1177/0884533614555234. ISSN 0884-5336.
  12. ^ a b c d e Sevilla, Wednesday Marie A. (2017). "Nutritional Considerations in Pediatric Chronic Disease". Pediatrics in Review. 38 (8): 343–352. doi:10.1542/pir.2016-0030. ISSN 0191-9601.
  13. ^ a b c d Samarasinghe, Shehani C.; Medlow, Sharon; Ho, Jane; Steinbeck, Katharine (1 January 2020). "Chronic illness and transition from paediatric to adult care: a systematic review of illness specific clinical guidelines for transition in chronic illnesses that require specialist to specialist transfer". Journal of Transition Medicine. 2 (1). doi:10.1515/jtm-2020-0001. ISSN 2568-2407.
  14. ^ Wenar, Charles, 1922- (2011). Developmental psychopathology : from infancy through adolescence. Kerig, Patricia. (5th ed.). Maidenhead, Berkshire: McGraw Hill. ISBN 978-0-07-713745-8. OCLC 756486438.{{cite book}}: CS1 maint: multiple names: authors list (link) CS1 maint: numeric names: authors list (link)
  15. ^ Compas, Bruce E.; Jaser, Sarah S.; Dunn, Madeleine J.; Rodriguez, Erin M. (27 April 2012). "Coping with Chronic Illness in Childhood and Adolescence". Annual Review of Clinical Psychology. 8 (1): 455–480. doi:10.1146/annurev-clinpsy-032511-143108. ISSN 1548-5943. PMC 3319320. PMID 22224836.{{cite journal}}: CS1 maint: PMC format (link)
  16. ^ Bell, M. F.; Bayliss, D. M.; Glauert, R.; Harrison, A.; Ohan, J. L. (1 May 2016). "Chronic Illness and Developmental Vulnerability at School Entry". Pediatrics. 137 (5): e20152475. doi:10.1542/peds.2015-2475. ISSN 0031-4005. PMID 27244787.
  17. ^ "Managing Chronic Health Conditions in Schools | Healthy Schools | CDC". www.cdc.gov. 19 August 2022. Retrieved 15 September 2022.
  18. ^ Didsbury, Madeleine S; Kim, Siah; Medway, Meredith M; Tong, Allison; McTaggart, Steven J; Walker, Amanda M; White, Sarah; Mackie, Fiona E; Kara, Tonya; Craig, Jonathan C; Wong, Germaine (2016-12). "Socio-economic status and quality of life in children with chronic disease: A systematic review: Social determinants and quality of life". Journal of Paediatrics and Child Health. 52 (12): 1062–1069. doi:10.1111/jpc.13407. {{cite journal}}: Check date values in: |date= (help)
  19. ^ Spencer, Nicholas J; Blackburn, Clare M; Read, Janet M (2015-09). "Disabling chronic conditions in childhood and socioeconomic disadvantage: a systematic review and meta-analyses of observational studies". BMJ Open. 5 (9): e007062. doi:10.1136/bmjopen-2014-007062. ISSN 2044-6055. PMC 4563224. PMID 26338834. {{cite journal}}: Check date values in: |date= (help)CS1 maint: PMC format (link)
  20. ^ Larson-Nath, Catherine; Goday, Praveen (2019-06). "Malnutrition in Children With Chronic Disease: Malnutrition in Children with Chronic Disease". Nutrition in Clinical Practice. 34 (3): 349–358. doi:10.1002/ncp.10274. {{cite journal}}: Check date values in: |date= (help)
  21. ^ Fuchs, Oliver; Bahmer, Thomas; Rabe, Klaus F; von Mutius, Erika (2017-03). "Asthma transition from childhood into adulthood". The Lancet Respiratory Medicine. 5 (3): 224–234. doi:10.1016/S2213-2600(16)30187-4. {{cite journal}}: Check date values in: |date= (help)
  22. ^ Monaghan, Maureen; Helgeson, Vicki; Wiebe, Deborah. "Type 1 Diabetes in Young Adulthood". Current Diabetes Reviews. 11 (4): 239–250. doi:10.2174/1573399811666150421114957. PMC 4526384. PMID 25901502.{{cite journal}}: CS1 maint: PMC format (link)
  23. ^ Nathan, Paul C.; Henderson, Tara O.; Kirchhoff, Anne C.; Park, Elyse R.; Yabroff, K. Robin (20 July 2018). "Financial Hardship and the Economic Effect of Childhood Cancer Survivorship". Journal of Clinical Oncology. 36 (21): 2198–2205. doi:10.1200/JCO.2017.76.4431. ISSN 0732-183X.
  24. ^ Hartley, Sigan L.; Barker, Erin T.; Seltzer, Marsha Mailick; Floyd, Frank; Greenberg, Jan; Orsmond, Gael; Bolt, Daniel (2010). "The Relative Risk and Timing of Divorce in Families of Children with an Autism Spectrum Disorder". Journal of Family Psychology. 24 (4): 449–457. doi:10.1037/a0019847. ISSN 0893-3200. PMC 2928572. PMID 20731491.
  25. ^ in collaboration with the Canadian Inherited Metabolic Diseases Research Network; Fairfax, Alana; Brehaut, Jamie; Colman, Ian; Sikora, Lindsey; Kazakova, Alessia; Chakraborty, Pranesh; Potter, Beth K. (2019-12). "A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability". BMC Pediatrics. 19 (1): 215. doi:10.1186/s12887-019-1587-3. ISSN 1471-2431. PMC 6600882. PMID 31262261. {{cite journal}}: Check date values in: |date= (help)CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  26. ^ Lummer-Aikey, Shannon; Goldstein, Sara (2021-05). "Sibling Adjustment to Childhood Chronic Illness: An Integrative Review". Journal of Family Nursing. 27 (2): 136–153. doi:10.1177/1074840720977177. ISSN 1074-8407. {{cite journal}}: Check date values in: |date= (help)
  27. ^ Thomson, Joanna; Shah, Samir S.; Simmons, Jeffrey M.; Sauers, Hadley S.; Brunswick, Stephanie; Hall, David; Kahn, Robert S.; Beck, Andrew F. (2016). "Financial and Social Hardships in Families of Children with Medical Complexity". The Journal of Pediatrics. 172: 187–193.e1. doi:10.1016/j.jpeds.2016.01.049. ISSN 0022-3476. PMC 4846519. PMID 26897040.
  28. ^ Kuhlthau, Karen; Hill, Kristen Smith; Yucel, Recai; Perrin, James M. (2005). "Financial burden for families of children with special health care needs". Maternal and Child Health Journal. 9 (2): 207–218. doi:10.1007/s10995-005-4870-x. ISSN 1092-7875. PMID 15965627. S2CID 9733318.
  29. ^ Serebrisky, Denise; Wiznia, Andrew (22 January 2019). "Pediatric Asthma: A Global Epidemic". Annals of Global Health. 85 (1): 6. doi:10.5334/aogh.2416. ISSN 2214-9996. PMC 7052318. PMID 30741507.{{cite journal}}: CS1 maint: PMC format (link) CS1 maint: unflagged free DOI (link)
  30. ^ "Health and Economic Costs of Chronic Diseases | CDC". www.cdc.gov. 8 September 2022. Retrieved 15 September 2022.

Kerig, P., Wenar, C. (2005). Developmental Psychopathology: From Infancy Through Adolescence. New York, NY: McGraw Hill.

Morison, J.E., Bromfield, L.M., Cameron, H. J. (2003). A Therapeutic Model for Supporting Families of Children with a Chronic Illness or Disability. Child and Adolescent Mental Health, 8 (3), pp. 125–130.

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