Tube dependency

Tube dependency refers to the process in which an individual becomes dependent on a feeding tube for nutrition. While the term technically refers to any individual who requires enteral feeding for nutrition, some practitioners specifically use this term for patients, primarily children, who are medically capable of eating by mouth but have been unable to wean from a feeding tube due to non-medical causes, which may be behavioral, sensory, or motoric in nature.^[1]

Overview

Tube dependency is a condition when patients treated with enteral nutrition via a feeding tube are unable to begin or resume oral feeding after the period of intended use is completed.^[2] This can lead to a physical and emotional dependency on tube feeding in absence of any medical indication.^[3] Tube dependency can begin after a few days of ENS (enteral nutrition support) or take weeks to develop. It is considered as an unintended complication of ENS.

Although tube dependency can be seen as an iatrogenic factor most practitioners do not consider it to be a medical diagnosis or condition. It merely refers to a patient's need for enteral feeding to sustain health. In fact, the term has been widely rejected by the disability and feeding tube communities because it fails to follow People-first language.^[4]

Affected Persons

Affected Persons are infants and toddlers, who had been in need of a temporary feeding tube because of their acute medical condition. This can include extreme prematurity, chromosomal anomalies, cardiac conditions, gut anomalies demanding immediate surgery like esophageal atresia or any medical complication leaving the infant in a fragile medical condition with insufficient nutritional intake. After treatment, children often unnecessarily remain tube fed avoiding any contact with food, resist the offering, touching and tasting of food and finally become tube dependent. The affected children are unable start/resume self-directed eating behaviour of tube feeding to make the transition to oral nutrition, as they develop an active aversion to or a disinterest in food. [3]

Signs and Co-Symptoms

The condition is characterised by aversive reactions to feeding and oral stimulation including Co-Symptoms. It can occur one week after tube insertion.

• Food refusal/Head turning
• Loss of appetite/disinterest
• Oversensitivity for touching, smelling, tasting food
• Nausea
• Gagging
• Retching
• Vomiting
• Anxiety attacks

Causes & Mechanism

Tube dependency develops in children who have the physical ability to ingest and digest food, but failed to be weaned off their temporary intended tube by traditional means and resist/refuse or cannot make the transition to natural oral feeding. It occurs after the phase of critical medical treatment and interventions when the child is expected to resume or start oral intake.

The medical reasons affecting oral explorative behavior, appetite, sucking and swallowing coordination are diverse, including extreme prematurity, neonatal or postnatal operations, intensive care, parenteral feeding, respiratory support and many more.

Many children are tube-fed during the critical age and the stage of developing oral skills. They may have neuromuscular and sensory conditions requiring physio-occupational and speech and language therapy before becoming ready for learning to eat.

The condition also has psychological and social causes. Children who have experienced oral trauma or have been exposed to medicines with bad flavors may become reluctant to repeat oral experiences.

Many children have been on the receiving end of well-intended encouragement and intrusive feeding attempts or even forced feeding, resulting in growing refusal and oppositional behavior.^[5] As the phenomenon of tube dependency is hardly recognized as a problem or functional disorder, there is no scientific data on the issue of incidence or risk of development nor epidemiology in countries with a high standard of neonatal medicine and surgery.

Diagnosis

Tube dependency is a new clinical phenomenon and isn't recognized as a separate diagnosis yet, thus there is no standardized valid diagnostic inventory to classify it. Tube dependency should be considered in any patient who remains tube-fed despite having the basic ability to ingest food orally^[6][7] and in absence of specific medical reasons to remain tube fed. In this case, assessment by a clinician experienced with eating development, tube management and tube weaning is recommended^{[8][9][10][11]}

There are two known methods that can aid in the possible diagnosis of tube dependency:

1. Observation of affected infants during a feeding situation by experienced clinicians.
2. A multiaxial diagnostic system focused on eating behavior disorders. It consists of five axis, which are compatible with the axis of the DSM-IV and subdivided in currently six feeding (eating behavior) disorders with different origins.^[12]

Consequences

There are positive and negative consequences of tube feeding. It is important to wean the child as soon as possible. The longer a child will be tube fed the higher the risk of becoming tube dependent.^[13][14]

Positive consequences:

• establishing life-supporting functions
• improving quality of life after severe medical conditions
• simple control of food intake and positive effect on growth

Negative consequences:

• excessive vomiting, retching and gagging
• reflux diseases, dislocations of feeding tubes, skin irritationss and skin inflammations
• reduced development of oral autonomy, lack of learning to eat autonomously
• impairment in speech, social and motor development
• active food refusal, oral hypersensitivity, food phobia
• strong defense against any contact with fluids, pureed and solid food
• interactive problems and burden to the family, social and financial stress

Indication

The decision to begin enteral feeding is made in most cases by a specialized medical team with a clear plan of treatment goals, the existence of some existing tube maintenance strategies and nutritional counselling and some idea of exit strategies.^[15]

During the phase of ENS (enteral nutrition support), patients are recommended to receive regular input from speech and language therapists, occupational therapy, physiotherapy and physicians with the aim of preserving oral functions, exposure to taste and texture preferences and supporting the patient and family to maintain some oral intake unless contraindicated.^[16][17][18]

Treatment

The treatment of tube dependency is tube weaning. The best time to make the transition from exclusive tube feeding to oral feeding is between the ages of 6–12 months.

The earlier the tube is removed and the younger the child, the easier the transition. At the same time, the intended nutritional goals of ENS (enteral nutrition support) must be defined and assessed critically and individually.^[19]

Small studies of children undergoing cardiac surgery have shown that they have the easiest transition and highest success rate (n=20) and it has been postulated that this is due to them being able to maintain oral intake throughout the feeding period.^[20]

There are a few techniques that are used to aid tube weaning when initial attempts have failed.

• A single paper report of an approach uses analgesic medication based on the theory that children experience pain with oral intake. A study in 2009 showed a 82% (n=9) success rate.^[21]
• Behavioral treatment has been used in small samples. A randomised control trial in 2000 showed a 47% (n=32) success rate.^[22]
• The Graz approach uses a combination of multiple theories and therapeutic inputs and Play Picnics and has a 92% (n=221) success rate.^[23]

References