Nonverbal Individuals with Intellectual/Developmental Disabilities Experiencing GERD: From Infants to Older Adults

Wendie C. Medina, DNP, RN, APN-CNS, CRRN

Abstract

This clinical review article provides a brief overview of the general literature on gastroesophageal reflux disease (GERD) and a focused review of existing and related research on GERD in nonverbal individuals with intellectual disabilities /developmental disabilities (I/DD). Older adults with I/DD who are nonverbal communicators due to severe/profound mental retardation (MR) hindering language development are the particular population of interest. As an exemplar of nonverbal populations facing GERD, infants/children were also included in the literature review. CINAHL, EBSCO, Lexis-Nexis, and Medline (FirstSearch/OCLC) databases were used to discover literature on strategies to identify and treat GERD. No citations specifically targeting aging (older) adults with I/DD, MR and GERD were found. Nine journal articles focusing on GERD in a broad population of persons, not specific to older individuals, with I/DD were discovered. Thousands of citations on GERD in the general population without I/DD were found. Infants/children with or without I/DD and/or neurological impairments were well represented in the literature on GERD and/or reflux, and on the recognition of nonverbal communication of pain and discomfort. Selected results from the literature review are presented on: a) GERD as a medical disorder; b) diagnosing GERD in the general population; c) assessing nonverbal/behavioral communication of GERD distress symptoms and pain in infants/children, as an exemplar of a nonverbal population; d) differentiating physiological reflux and GERD in infants/children; e) assessing GERD in the broad population of persons, not specific to older individuals, with I/DD-MR; f) nonverbal/behavioral communication as a factor impacting GERD identification in adults with I/DD-MR; g) aging as a factor impacting GERD in adults with I/DD-MR; h) a profile of GERD in nonverbal adults with I/DD-MR detailing predisposing factors of GERD and significant reflux symptoms; and i) identifying and treating GERD in adults with I/DD-MR. All of these literature findings provide a backdrop to future research expected to increase the identification and treatment of GERD in the nearly unstudied population of older adults with I/DD-MR.

Keywords: GERD , gastroesophageal reflux , regurgitation , rumination

INTRODUCTION

This clinical review article provides a brief overview of the general literature on gastroesophageal reflux disease (GERD) and a focused review of existing and related research on GERD in nonverbal individuals with I/DD (intellectual disabilities /developmental disabilities). Older adults with I/DD who are nonverbal communicators due to severe/profound mental retardation (MR) hindering language development are the particular population of interest. The purpose of this article is to discover evidence-based strategies, as reported in the literature, to identify and treat GERD in this population. It was, however, not surprising to find no publications specific to GERD in aging (older) adults with I/DD-MR, and a dearth of publications on GERD in adults with I/DD-MR. Only nine journal articles focusing on GERD in a broad population of persons (predominantly adults, but including some children), and not specific to aging (older) adults with I/DD-MR, were discovered^1-9. Thousands of citations on GERD in the general population without I/DD and in infants/children, with or without I/DD and/or neurological impairments, were found in the literature search. Select citations on GERD in the general population^10-23 and on infants/children^24-35 are used as references.

Prevalence of GERD

Gastroesophageal reflux disease (GERD) is a pathological disorder characterized by frequent backflow of gastric contents into the esophagus^{10, 11, 12, 13, 15}. GERD is estimated to affect 5% to 7% of the global population according to the International Foundation for Functional Gastrointestitinal Disorders³⁷. This prevalence is based on heartburn occurring once a day. But, if prevalence is calculated based on weekly episodes of heartburn and/or acid regurgitation occurring in many individuals, then it is estimated that about 20% of individuals worldwide are affected^{13, 38}. Sixty million Americans are diagnosed with GERD³⁹, as reported at the American College of Gastroenterology's 68th Annual Scientific Meeting.

Prevalence of GERD in Adults with I/DD

Unlike the prevalence in the global population, GERD is believed to occur in almost 50 % of individuals with I/DD^{2, 4, 5, 7, 9}. One author speculates that this is due to comorbid complex physical disabilities and advancing age⁴⁵. Persons with severe and profound mental retardation (MR) comprise 4-6% of the population with mental retardation. They acquire little or no communication skills in early childhood, and this lack of communicative language may predispose aggressive and disruptive behaviors as an alternative means of communication⁴⁹. These aggressive and disruptive behaviors are problem behaviors, but they serve a specific function, have communicative intent, do not occur randomly and may serve multiple purposes⁵¹. These challenging behavioral and non-language communicative modes compound the risks for unidentified and untreated GERD in aging adults with I/DD-MR, as symptoms of GERD distress cannot be described through language.

Significance of GERD

Society experiences a significant economic burden from GERD. Approximately $8 billion is spent annually in the United States on reflux/GERD medications; with expenditures of $2 billion and $6 billion, respectively on over-the-counter and prescription drugs¹⁰. Despite these dollar figures, experts and data in the literature point to a lack of identification and optimal treatment for patients with GERD³⁷. It is thought that for many patients, adolescents to senior citizens, there is unnecessary suffering, pain and other severe symptoms. There is an impact on quality of life and risk for serious complications and medical disorders³⁷. Barrett's esophagus is a complication from persistent reflux in GERD. In Barrett's, the normal esophageal squamous mucosa is replaced by columnar epithelium resembling the stomach or intestines, and this is associated with an increased risk of esophageal adenocarcinoma. These complications and sequelae are quite unfortunate, as GERD is generally a treatable disease⁴⁰, if recognized, identified and treated.

Experts in the field agree that GERD affects both the health and quality of life of those in the general population who suffer its symptoms. Several studies have used quality of life (QoL) and GERD-specific QoL instruments to quantify the suffering/impairment of well-being issues experienced in the general population with GERD^{10, 41-44}. Variables like emotions, vitality, and pain and symptom severity are included in the data from these studies of the general population. The lack of capacity for persons with severe/profound MR to directly communicate through language and report on these same GERD discomfort issues does not mean that the discomfort does not exist. GERD discomfort is experienced by most aging adults with I/DD⁴⁵, according to McGowan's extensive clinical experience. Clinical research in communicative means other than language to express GERD distress is predominantly an unstudied topic in aging adults with I/DD-MR.

Literature Review

CINAHL, EBSCO, Lexis-Nexis, and Medline (FirstSearch/OCLC) databases were used to search the literature for strategies to identify and treat GERD in aging (older) adults with I/DD who are nonverbal communicators due to severe/profound mental retardation (MR), which hinders language development. Since no citations specifically targeting older or aging adults with I/DD, MR and GERD were found, infants/children were added to the literature review as an exemplar of nonverbal populations facing GERD. The description and summary of findings are presented with the focus on nonverbal individuals with I/DD, from infants to older adults, who experience GERD.

Selected results from the literature review are presented on: a) GERD as a medical disorder; b) diagnosing GERD in the general population; c) assessing nonverbal/behavioral communication of GERD distress symptoms and pain in infants/children, as an exemplar of a nonverbal population; d) differentiating physiological reflux and GERD in infants/children; e) assessing GERD in the broad population of persons, not specific to older individuals, with I/DD-MR; f) nonverbal/behavioral communication as a factor impacting GERD identification in adults with I/DD-MR; g) aging as a factor impacting GERD in adults with I/DD-MR; h) a profile of GERD in nonverbal adults with I/DD-MR detailing predisposing factors of GERD and significant reflux symptoms; and i) identifying and treating GERD in adults with I/DD-MR. All of these literature findings provide a backdrop to research which is expected to increase the identification and treatment of GERD in the nearly unstudied population of older adults with I/DD-MR.

GERD

What is GERD?

Gastroesophageal reflux disease (GERD) is a pathological disorder characterized by frequent backflow of gastric contents into the esophagus^{10-13, 15}. Despite voluminous articles and studies on GERD, as a disorder, its actual cause is not fully understood^{13, 17} and continues to be investigated¹⁸. Physiological and environmental factors are identified as playing roles in decreasing lower esophageal sphincter (LES) pressure²². Events that can lower LES pressure are as simple as bending over after eating or obesity¹³. This decreased LES pressure allows refluxate, gastric contents,to backflow into the esophagus^{10, 12-15}. This reflux is commonly called "heartburn"^{10-12, 14, 15}.

Heartburn, an excessive backflow of gastric contents (refluxate) into the esophagus^{11, 19-21, 23}, is a primary symptom of gastroesophageal reflux disease (GERD) and is a fairly common problem for about 15% of the global population²¹. An occasional bout of heartburn is not GERD, nor does it require much attention. There is not much of an impact from occasional heartburn, often referred to as "reflux" – short for gastroesophageal reflux (GER). Occasional heartburn (reflux) does not impact the overall health and quality of life of persons experiencing this minor inconvenience. However, heartburn that occurs two or more times a week is likely to be GERD³⁶; it is a medical disorder that impacts the health and quality of life of the individual and requires attention.

Diagnosing GERD

The literature identifies several characteristics, situations, patient reported symptoms and historical events that can provide a sufficient basis for the empirical diagnosis and treatment of GERD without further diagnostic testing^{10, 12, 14-16}. The frequency of common GERD symptoms in the general population and their percentage of occurrence are listed in TABLE I¹⁰. In addition to these common patient complaints of reflux and GERD distress, TABLE II lists the risk factors and potential associated symptoms of GERD which may assist in making the diagnosis of GERD in the general population^10-12.

TABLE I. FREQUENCY OF COMMON GERD SYMPTOMS¹⁰

Symptoms	Frequency
Heartburn	70-85%
Regurgitation	60%
Dysphagia	15-20%
Angina-like pain	33%
Bronchospasm	15-20%

TABLE II. GERD Risks & Associated Symptoms ^{10, 11, 12}

Diseases increasing risk	Medications increasing risk	Extraesophageal symptoms	Pulmonary symptoms
scleroderma diabetes obesity hiatal hernia smoking alcohol intake	phentolamine potassium supplements progesterone prostaglandins quinidine barbiturates diazepam sedative theophylline tetracycline alendronate anticholinergics beta blockers caffeine ca channel blockersdopamine estrogen glucagons nitrates NSAIDs	aphtous ulcers chronic throat clearing hoarseness otitis media palatal dental erosion pharyngitis sinusitis	asthma exacerbations bronchiectasis chronic bronchitis chronic cough idiopathic pulmonary fibrious COPD recurrent pneumonia

As no test for GERD is definitive, the diagnosis relies on the patient's report and clinical history¹². Most research reporting the success of empirical diagnosis has relied on patients' reports of relieved GERD symptoms once medical treatment has been initiated with acid suppression treatment, usually proton pump inhibitors (PPI)^{11, 16}. The ability to generalize this strategy to confirm the diagnosis of GERD in a population who cannot verbally report symptoms poses a problem, yet it speaks to the essence of the issue at hand: How can GERD be identified and treated in aging adults with severe/profound MR? How can aging adults with I/DD who are unable to communicate through language, communicate distress caused by GERD?

ASSESSING GERD IN INFANTS/CHILDREN

Physiologic Reflux

The physiologic reflux that occurs in infants is a very common condition, occurring in 67% of infants at 4-5 months of age and declining to 5% or less of infants at 12 months of age^{25, 31, 33}. This gastroesophageal reflux is physiologic, as there are no consequences²⁹; it is not pathological like GERD. Regurgitation, vomiting or "spitting up" that resolves without sequelae over time is physiologic reflux. Physiologic reflux is outgrown^{25, 29, 32, 33}. There is evidence that children who do have severe or chronic GERD may continue through adulthood with GERD^{25, 34}, and that adult refluxers are more likely to recall a history of GERD symptoms from childhood³⁴.

Pathologic GERD

Unlike transient physiological reflux or even colic, the pain and distress that accompanies GERD, as an ongoing disorder in infants and children, is difficult to assess^29-31. In addition to observing for the symptoms of pathological GERD as cited in the literature (see TABLE III)^29-32, the infant's crying and irritability due to esophagitis are equivalent to adult complaints of heartburn and chest pain²⁹. Infant communication of GERD distress is nonverbal and behavioral, and can include yawning, hiccups, arching, stretching, stridor and hand-mouthing^{29, 35}. All of these same nonverbal and behavioral communications can be seen in the aging adult population with I/DD. The issue of interest is whether or not these same nonverbal communications can be generalized and be understood as communications of GERD distress in the population of aging adults with I/DD, who are also nonverbal communicators.

TABLE III.

PATHOLOGIC GERD* in INFANTS29
Malnutrition Respiratory Disorders Esophagitis

*not benign gastroesophegel reflux

Nonverbal Distress and Pain

The literature on pediatric pain in nonverbal infants/children, though not necessarily specific to gastrointestinal issues, provides additional insight to assessment challenges^52-56. It is well documented that pain assessment in pediatric populations, especially infants and children with cognitive impairments such as moderate to profound mental retardation^57-60, is complicated and perplexing, as the infant is incapable of speech^52-56. The research done on the infant population may provide a conceptual "link" and answers for the population of aging adults with severe/profound MR, as they also function at a nonverbal (prelinguistic) communication level.

The American Academy of Pediatrics and the American Pain Society⁵² have published guidelines on the assessment and management of acute pain in infants, children and adolescents. These guidelines recognize that pain experienced by children with DD, special health care needs, cognitive impairment, and/or having problematic communication are particularly difficult to accurately assess^{52, 53, 59}.

If "aging adults with I/DD" is substituted for "pediatric," many of the recommendations made by the Academy may be "borrowed" and applied to aging adults with I/DD. These borrowed strategies include: a) learning about pediatric pain and pediatric pain management principles and techniques; b) using appropriate assessment tools; c) anticipating predictable painful experiences to intervene and monitor accordingly; d) using a multimodal approach for pain management and a multidisciplinary approach; e) involving families to individualize interventions; and f) advocating for research in pain management and effective use of pain medications⁵².

Additional research on pain assessment⁶⁰ and pain risk factors⁵⁹ in children with severe cognitive impairments provides additional conceptualizations that may be applicable to aging adults with I/DD. One obvious fact is that these children will age into the population of interest, and their cognitive impairments will continue to play a life-long role in their communication with others. Assessment strategies that address cognitive capacity ought to continue to be effective, as cognitive capacity remains impaired despite chronological age advancing. Additionally, one study³⁴ reported on 63% of adult refluxers recalling a history of childhood reflux³⁴.

ASSESSING GERD IN ADULTS WITH I/DD-MR

Nonverbal and Behavioral Communication

The general population can report common GERD distress symptoms such as heartburn to practitioners; whereas aging adults with I/DD and severe/profound mental retardation (MR) cannot verbally communicate their discomfort to practitioners^{47, 48}.

Severely and profoundly mentally retarded persons comprise 4-6% of the MR population. They acquire little or no communication skills in early childhood⁴⁹. Their language comprehension and development remains prelinguistic, matching normal levels of development for 0-18 months of age⁵⁰. Prelinguistic intentionality and nonverbal behaviors such as body posture, directed gaze and gaze aversion, facial expressions, crying, and vocalization of sounds⁵⁰ may be indicators of distress in this population of aging persons with severe/profound MR.

This lack of communicative language may predispose aggressive and disruptive behaviors as an alternative means of communication⁴⁹. These aggressive and disruptive behaviors are problem behaviors, but they serve a specific function, have communicative intent, do not occur randomly and may serve multiple purposes⁵¹. As communication involves both receiving and sending of messages, understanding and interpreting prelinguistic and nonverbal/behavioral communication in this population is complex.

Prelinguistic comprehension (receiving capability) is apparent by observing a person's response to loud or angry voices, as well as to intonation patterns. Communicative intent (sending capability) at the prelinguistic level is apparent by observing a person's nonverbal and vocal behaviors, including the person's body posture; facial expressions; directed gaze and gaze aversion; crying and cooing; intonated vowels and/or babbling vocalizations⁵⁰. These complex and challenging nonverbal and behavioral communications may contribute to GERD as a major clinical problem that is overlooked and underestimated in aging adults with I/DD^{2, 3, 5, 7, 9}.

Aging in Adults with I/DD

Persons with I/DD are living longer. The mean age at death for persons with I/DD in 1993 was 66 years of age (46. This is a significant increase in longevity when compared to the mean age at death in the 1930s of 19 years and in the 1970s of 59 years⁴⁶. There were an estimated 641,000 adults with developmental disabilities over the age of 60 in the U.S. in 2000. Their numbers are expected to nearly double by 2030 to 1,242,800 as the baby boom generation passes age sixty⁴⁶. The incidence of GERD is reported to increase in the general population with advancing age, often occurring in the 5^th decade of life¹⁵. In addition to increased GERD risk factors for infants, children and adolescents with I/DD, longevity may further complicate GERD as persons with I/DD move into and beyond the fifth decade of their lives.

Profile of GERD

One group of authors reporting major prospective research on GERD in persons with I/DD was found in the literature review^{1, 2, 7, 9}. These researchers conducted a major study of 435 Dutch and Belgian institutionalized individuals with IQ< 50, mean age 34-35 (SD 15-16) years, range 4-77years, with 48 children under 20 years of age and N=387 adults over age 20. They investigated possible GERD predisposing factors and possible GERD symptoms. When comparing abnormal and normal 24-hour gastric pH results (pathological pH test = median duration pH< 4), only the use of anticonvulsant drugs and cerebral palsy were discriminative for GERD.

Significant reflux symptoms included persistent vomiting, hematemesis, rumination, regurgitation, food refusal, recurrent pneumonia, and behavior problems such as automutilation, aggression, fear, screaming episodes, depression, and restlessness^{1, 2, 5, 7, 9}. Iron deficiency anemia and constipation were also possible contributing factors (See TABLE IV)^{1, 2, 5, 7, 9}.

A risk profile was defined using multivariate analysis. Significant predisposing factors for GERD included nonambulancy, scoliosis, cerebral palsy, anticonvulsant use, including all benzodiazepines, and IQ<35 (See TABLE V)^{1, 2, 7, 9}. This study's results suggest 50% of persons with I/DD have GERD^{1, 4, 7, 9}. This is noteworthy when compared to the 5-7% prevalence of GERD in the general population³⁷.

Another group of authors in Australia⁵ reported a GERD case study as exemplar to the important differences in prevalence, risk factors and the presentation of physical illness by persons with I/DD. Categories of behavior that have been identified as indicative of pain or discomfort in persons with severe communication impairment and/or I/DD-MR were described consistently with the findings of Bohmer's clinical research in the Netherlands^{1, 2, 7, 9} (See TABLE VI). Vocalization, eating/sleeping changes, mood changes, facial expression, activity changes, gestures, and physiological changes are discussed as behavioral presentations. More extreme behaviors, such as catatonia, screaming, biting, head banging and aggression, also are reported^{1, 2, 5, 7, 9}.

TABLE VI.

Clinical Symptomatology : Communicating GERD Pain/Discomfort with I/DD
Vocalizations Eating/sleeping changes Mood changes Facial expressions Extreme behaviors Catatonia Screaming Biting Head banging Aggression

IDENTIFYING AND TREATING GERD IN AGING ADULTS WITH I/DD-MR

In identifying GERD, Bohmer and colleagues^{2, 5, 7, 9} conclude that practitioners need a high degree of suspicion when assessing persons with I/DD who present with non-specific symptomatology, including disturbed behavior, as possible GERD. Practitioners need to know that the most effective treatment for GERD in persons with I/DD is long-term omeprazole therapy^{2, 5, 7, 9}. Additional non-pharmaceutical interventions include maintaining an upright position after eating; avoiding food or fluids for at least 2-3 hours before bedtime; raising the head of the bed six inches via blocks or a wedge; eating small meals; eating slowly; avoiding foods with caffeine peppermint, citrus, tomatoes, alcohol, or fatty foods¹²; and avoiding medications known to increase GERD risk (See TABLE II).

Unlike the general population, aging adults with I/DD and severe/profound mental retardation (MR) cannot communicate verbally. Few or no communication skills are developed in early childhood. Language comprehension and communicative intent is prelinguistic. Prelinguistic comprehension (receiving) is apparent by observing a person's response to loud or angry voices, as well as to intonation patterns. Prelinguistic intent (sending) is apparent by observing a person's nonverbal and vocal behaviors, including the person's body posture; facial expressions; directed gaze and gaze aversion; crying and cooing; intonated vowels and/or babbling vocalizations⁵⁰. Overlooking or underestimating GERD is often exacerbated by these challenging nonverbal/behavioral communications⁵.

In order not to overlook GERD in persons with I/DD-MR, the predisposing factors and symptoms identified in the research should be considered by the nurse caring for this population. The predisposing factors listed in TABLE V^{1, 2, 5, 7, 9} and symptoms listed in TABLE IV^{1, 2, 5, 7, 9} that occur at least four times a month, along with communications of pain/discomfort as listed in TABLE VI⁵, should raise the suspicion for GERD to the highest level. The importance of nursing staff and direct care staff awareness and recognition of reflux symptoms cannot be understated. In addition to life style and care measures, referral to a practitioner for evaluation and pharmacotherapy is essential. Prescribing practitioners may obtain additional diagnostic testing for Helicobacter pylori, gastric pH, esophageal damage and swallowing problems. Follow up is crucial to prevent complications and to improve the quality of life through relief of GERD pain and discomfort.

NURSING IMPLICATIONS AND FUTURE DIRECTIONS

The references from the literature provided a review of: a) GERD as a medical disorder; b) diagnosing GERD in the general population; c) assessing nonverbal/behavioral communication of GERD distress symptoms and pain in infants/children, as an exemplar of a nonverbal population; d) differentiating physiological reflux and GERD in infants/children; e) assessing GERD in the broad population of persons, not specific to older individuals, with I/DD-MR; f) nonverbal/behavioral communication as a factor impacting GERD identification in adults with I/DD-MR; g) aging as a factor impacting GERD in adults with I/DD-MR; h) a profile of GERD in nonverbal adults with I/DD-MR detailing predisposing factors of GERD and significant reflux symptoms; and i) identifying and treating GERD in adults with I/DD-MR. All of these literature findings provide a backdrop to future research, which is expected to increase the identification and treatment of GERD in the nearly unstudied population of aging (older) adults with I/DD-MR.

These valuable references provide the only evidence-based resources available at this time to define a profile of GERD in adults with I/DD-MR. Building on existing works presented in this paper; further research on adults and aging adults with I/DD-MR is needed to track the presence of risk factors and the occurrence of symptoms in an effort to develop an empirical model for the identification and treatment of GERD in this vulnerable population.

The challenge of future research is in recognizing the ways in which nonverbal communicators with severe/profound MR communicate GERD-distressful symptoms. A large portion of the research with aging adults with I/DD and severe/profound MR will be related to describing this population's communication of potential GERD distress symptoms and determining the people within this population who have the GERD-associated risk factors identified in the literature. Being able to accurately recognize and describe prelinguistic and behavioral communication will be paramount. The limited development of language and existing communication abilities at the prelinguistic developmental level is likely responsible for the lack of research with this population. The need to observe and describe nonverbal and behavioral communication in aging adults with I/DD-MR and at risk for GERD should provide a basis for the identification of previously unidentified GERD.