The child with chronic disease

Published on 21/03/2015 by admin

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Last modified 21/03/2015

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3 The child with chronic disease

Sarah Steel, Nandu Thalange

Introduction

Most children seen in primary or secondary care have an acute illness and most will make a complete recovery. When this does not happen, and ill health drags on, it impairs a child’s natural, lively, sociable lifestyle. Care of these children and their families is as much about making life as normal as possible as about treating disease. This requires thoroughness, understanding and teamwork.

Chronic disease

The prevalence of chronic disease in childhood is between 6% and 11%. Common chronic childhood diseases are listed in Table 3.1 and details of these conditions are found in the appropriate chapters. They produce a wide variety of clinical symptoms and require specialist assessment and management. Principles underlying the care of all children with chronic disease are highlighted in this chapter.

Table 3.1 Common chronic childhood diseases by system

System	Common chronic diseases
Respiratory	Asthma, cystic fibrosis
Cardiac	Congenital heart disease
Renal	Chronic kidney disease
Endocrine	Diabetes
Musculoskeletal	Developmental dysplasia of the hip, juvenile idiopathic arthritis, Perthes’ disease, scoliosis
Gastrointestinal	Inflammatory bowel disease
Neurological	Epilepsy, cerebral palsy, muscular dystrophy
Developmental	Learning difficulties

Some conditions are present at birth and result in lifelong disability. Others, e.g. Perthes’ disease, asthma and epilepsy, may have an impact on health for a few years before resolving. Many conditions are life-threatening and a few lead to progressive disability.

Most children with chronic disease are managed as outpatients. It is better for children to be at home or at school as much as possible, and treatments are increasingly geared to this goal. Even highly complex interventions such as intravenous treatments and assisted ventilation can be managed at home by well-supported and trained carers and through the use of specialist home nursing teams.

The child’s perspective

Try to view the problem from the child’s perspective. What professionals, parents or teachers might consider to be the major issues may well be at odds with the child’s concerns and fears. Listening to the child is vital. Children will tell what it is that’s bothering them if professionals take the time to ask and to listen. Children will often feel better simply for being listened to. If they will not talk to doctors they will often pour out their hearts to other team members such as nurses or therapists. Health professionals are in a powerful position to advocate for children and – sometimes – change their lives for the better.

An approach to chronic illness

An holistic approach views the child’s needs in five domains: medical, educational, social, developmental and emotional.

Medical

The family’s agenda

Consultation should start with the family’s concerns. Initially these are likely to concern diagnosis and prognosis and, later, more practical problems. If family concerns are not dealt with, care will suffer. For example, professionals may be keen to emphasize the importance of regular physiotherapy or drug compliance, but the child may be more concerned that medication might be causing weight gain, or the parents that the child demands their attention for an hour each night at 3 a.m.

Diagnosis

This is usually established early in the illness but should be reviewed from time to time. Usually this means a quick review of notes to ensure that the diagnosis is secure. Medical knowledge moves on and these children may be under follow-up for many years. Re-investigation may be appropriate.

Systematic review

This is useful in the profoundly impaired child where any system and any aspect of care can be involved. Ask about basic functions: feeding, sleeping, bowels, bladder, mobility and self-care.

Medication

Medication regimes are often complex. Ask what medications the family are actually giving. Be open about compliance: ‘Is he happy to take the medication?’, ‘Do you ever forget or get confused?’. Keep regimes as simple as possible. Use treatment charts or pill containers to help with this. Consider medication side-effects and drug interactions.

Monitoring progress

Shared health records and diary cards are often helpful, e.g. recording blood glucose results in children with diabetes, drug dosage changes or seizure frequency in epilepsy, or peak flows and treatment escalation rules in asthma. Physical examination at clinical review depends on the nature of the condition. Growth and development should always be monitored, and vision and hearing checked in children with neurological problems. In some cases regular investigations are necessary. An annual review of the whole case using a specific protocol is often good practice.

Prognosis

Consider the severity and outlook for this disease. Do professionals and family share a common understanding of these? If the prognosis is poor, is there an agreed plan for resuscitation or terminal care? Such issues demand high levels of trust between professionals, the family and the child. Integration and coordination of the healthcare professionals involved is crucial.

Information

Families and children should be advised where to find more information about the condition. Parent support groups often produce helpful literature and help lines. A suitable web site to inform their search for information is very useful.

Education

Going to school is important for every child’s personal and social development, as well as for their education. This presents particular difficulties for children with chronic disease.

Medical needs in school

These may be as simple as access to an inhaler for asthma or as complex as gastrostomy feeds, buccal midazolam as emergency treatment for seizures, or upper airway suction to clear secretions. With proper planning, staffing and staff training these complex medical needs can be met in school. Whilst specialist provision may be necessary to deliver medical care, all school staff need to be aware of symptoms and to be able to offer first aid.

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