Lifestyle issues in children and adolescents with chronic inflammatory bowel diseases

The goals of therapy in chronic inflammatory bowel diseases in pediatrics include decreasing mucosa! inflammation, the restoration of optimal growth and pubertal development, and the return to a normal, age-appropriate lifestyle. The latter is best served by minimizing restrictions; for example, school attendance, extracurricular activities, travel and the child's interactions with both siblings and peers. In most instances dietary restrictions are also inappropriate and may prove detrimental. Children and adolescents are not simply 'little adults'. Teenagers dread being perceived as different from their peers. They are especially bothered therefore by cosmetic side effects associated with corticosteroid therapy and by impaired growth and pubertal development. Although not discussed openly, many adolescents are also concerned about their subsequent ability to have children and the potential for future development of neoplasms. The great majority of affected children adapt and function very well. Psychosocial factors, although clearly not the cause of inflammatory bowel diseases, are operative in many subsets of children with less than optimal function in daily activities. Children at particular risk are those with premorbid low self-esteem, dysfunction in family dynamics, or severe growth failure. Intervention and support provided through psychiatric and medical social work consultations and by the involvement of self-help groups are often key determinants for restoration of a normal lifestyle. Information about the underlying chronic disease, when provided at a level that is appropriate for age and cognitive (unction, can decrease anxiety and fears by reducing uncertainty and promoting a feeling of control. Can J Gastroenterol 1990;4(7) :364-368 ( pourresume, voir page 365)

C ROHN'S DISEASE AND IDIOPATHIC ulcerative colitis are chronic in• flammatory diseases of the bowel of un, known etiology.They are both charac, terized by a remitting and relapsing clinical course.Goals of medical therapy are summarized in Table I.One of the goals is to control the severity of mucosa!inflammation and thereby alleviate clinical symptoms.Secondly, in pediatric chronic inflam, matory bowel disease (IBO) it is impor• tant to optimize growth and pubertal development.Intestinal inflammation frequently results in anorexia and sig• nificantly decreased caloric intake.A1 Questions liees au mode de vie de l'enfant et de !'adolescent atteints d'enteropathies inflammatoires chroniques RESUME: Le traitement des maladies inflammatoires de l'intestin en milieu pediatrique a pour objectifs de reduire !'inflammation de la muqueuse, de restaurer la croissance optimale et le developpement pubertaire, et de permettre le retour a un mode de vie normal, adapte a l'age du patient.C'est en minim1sant les restrictions relatives a la frequentation de l'ecole, aux activites extracurriculaires, aux voyages et aux interactions de l'enfant avec ses freres et soeurs et ses pairs, que l'on parvient le mieux a realiser ce demier but.Dans la plupart des cas, les restrictions alimentaires sont elles aussi inappropriees et peuvenc s'averer nocives.Enfants et adolescents ne sont pas simplement de "petits adultes".
La grande majorite des enfants s'adaptent et fonctionnent tres bien.Les facteurs psychosociaux, quoique ne constituant evidemment pas la cause des Mil, interviennent clans de nombreux sous-groupes d'enfants qui eprouvent des difficultes Jans leurs activites quotidiennes.Les patients particulierement vulnerables sont les enfants qui avaient deja des problemes d'estime de soi avant la maladie, ceux dont le milieu familial est perturbe ou qui sont atteints d'un severe retard de croissance.L'intervention et l'appui des professionnels oeuvrant en psychiatric et en medecinc sociale, ainsi que l'appartenance a un groupe de soucien sont souvent esscntiels a la reprise d'un mode de vie normal.Quand ils sont offercs a un niveau adapte a l'age et a la fonction cognitive, !es renseignements concemant la maladie chronique sous-jacente peuvent reduire l'anxiete et les craintes de l'enfant; ils diminuent son incertitude et lui donnent un sens de controle accru.a resulc, up to one-third of adolescents with Crohn's disease and 10% of those with ulcerative colitis will present with medical and psycho logical complications of decreased growth velocity and delayed onset of puberty ( 1 ).In spite of the fact that currently available drug therapy cannot eradicate the underlying disease, it is essential to return affected children and adolescents to a normal lifestyle which is appropriate for chronological age and cultural background.

STRIVING TO NORMALIZE LIFESTYLE
For many children with IBO, alleviation of clinical symptoms will result in a rapid return to premorbid daily activities.It is the authors' experience, however, that in a subset of affected patients this does not occur despite control of mucosa!inflammation.Misconceptions about the role of stress in the etiology of the underlying disease increases parental gu ilt and anxiety which may then decrease parenting capacity.Secondary gain fo r the affected child can also promote limitations in the day-co-day function of patients.External restrictions all too frequently compound the problem.Therefore, in the vast majority of situations, the authors strongly encourage the lifting of both physician and parental imposed restrictions brought about as a result of diagnosis of a chronic disease such as Crohn's disease or idiopathic ulcerative colitis (Table 2).
Except in the most exceptional circumstances, education by a home tutor is discouraged.Although a tutor can provide excellent educational resources, this approach deprives the child or adolescent of the important social and extracurricular aspects of daily interactions at school with members of their peer group.Using similar logic, travel plans for families should be executed without undue consideration of their affected child.In the majority of nonemergent clinical settings, specific therapy can be adjusted to holiday plans and contact with a consultant pediatric gastroenterologist can be organized as required.Most patients Lifestyle issues in children and adolescents

Promote regular school attendance Encourage full participation In extracurricular activities Allow travel
Eliminate unnecessary dietary restrictions should be allowed to participate fully in both casual and organized sporting ac-t1v1ties.
The merits and necessity of dietary restrictions also need co he critically examined in children and adolescents.Physicians may recommend diets chat are restricted in refined sugars, lactose and dietary fibre as part of the overall treatment regimen.In addition, parents often have the impression that the underlying disease is either caused or exacerbated hy specific dietary constituents.A major problem with dietary modifications is chat they frequently resu lt in a less appetizing diet which discourages total caloric intake.Levenstein et al (2) concluded chat "lifting of dietary restrictions, which results in a more appetizing and nutrinous diet, does not cause symptomatic deterioration or precipitate intestinal obstruction in Crohn's disease."Unrelated to IBO, some patients may have genetic hypolactasia and dietary lactose intolerance.Although limitations of lactose intake may provide some relief of intestinal symptoms, there is no strong evidence that it alters underlying disease activity.
Imposition of dietary modifications can result in a major source of confl ict between the children and both parents and unaffected siblings.Dietary modificatio ns also highlight differences between patients and their peer group.Therefore, except in specific circumstances ( ie, salt restriction while on oral corticosteroids, an initial course of elemental feedings, or partial bowel obstruction due to stricture formation), a full diet for age is most appropriate.Other commentators feel differently, however, and recommend modification of lifestyle to a regulated daily routine, particularly related to meals, as part of the treatment program (3).
The present authors have recently provided epidemiological evidence that infant feeding practices might have a role in the later development of Crohn's disease in childhood (4).In this study mothers were used as the source of information to reduce recall bias and nonaffected siblings were employed as controls to account for potential genetic and environmental factors as confounding variables.Multivariate analysis revea led that both an absence of breast feeding (adjusted relative risk 3.6; 95% confidence intervals l .4 to 9 .O; P<O.O I) and episodes of diarrhea during infancy (2.7; 1.5 to 5.8; P<0.02) were associated with an increased likelihtxxl of later Crohn's disease.Although epidemiologic studies such as this provide evidence of an association, they do not prove cause and effect (5).Moreover, although a previous study in adults is in agreement with the authors' findings (6), two other studies did not provide similar results (7,8).Therefore, until confirmed by additional data this observation does not yet justify any modification of infant feeding practices among fartulies whose children are potentially at increased risk for the development of IBO.

SPECIFIC CONCERNS OF CHILDREN
The particular worries that affect individual patients are, as among adults, highly individualized.Nevertheless, some general concerns are particularly relevant to the pediatric population (Table 3).For example, adolescence is a stage in life when body image is a major psychological issue.Delays in growth and pubertal development can, therefore, be sources of major emotional turmoil for affected patients.Similarly, complications of the underlying disease (such as perianal and rectovaginal fistulas) and the future possibility of an abdominal incision scar and ileostomy are often major concerns for adolescents (9).Medical therapy can also result in altered body composition and strongly influence concepts about body image.The cosmetic side effects of oral corticosteroids are a powerful disincentive for many adoles-cents to consider even a short term course of prednisone therapy.
Both school-aged children and teenagers arc strongly influenced by their peer groups.They desire to fit in with the group because the penalties of being perceived as different are emotionally devastating.Therefore, a major concern for pediatric patients with IBO is how the chronic bowel disease will result in their being perceived as different from their peer group (10).This issue must be considered when one is advising patients and their parents about who should know about the underlying disease.Many teachers, coaches and camp instructors are frightened and exceptionally ill informed about the meaning and implications of chronic IBD for an affected child.Similar concerns relate to the discussion of IBO among peen, and the parents of peers.Therefore, the relative merits of disclosure of the disease must often be discussed and decided on an individual basis.In general,the authors suppon the right to privacy and encourage disclosure only when it is medically indicated and strongly supported by the patient.For example, at may be most appropriate for the school nurse to be informed about the diagnosis and current therapy.The important, but broader, objective of educating teachers and the general public rests with health care professionals and with organizations such as the Canadian Foundation for Ileitis and Colitis rather than with individual children and their immediate family members.
Many adolescents and even children at much younger ages often have concerns about issues that neither their parents nor physicians wish to discuss openly.The authors are impressed by how many pediatric patients with IBO are concerned about the ability co have children in their adult years.As a result, they will often discuss this even if it has not been specifically raised.
Concerns about the potential for malignancy also plague many schoolaged children and adolescents even though the issue may not be brought up for discussion with physicians.When the concern is raised, relative risks for ulcerative colitis and Crohn's disease as

PSYCHOLOGICAL FACTORS AFFECTING PEDIATRIC PATIENTS WITH IBD
The vast majority of children with IBD function extremely well and rapiJ, ly return to a pre-morbid, age-appropriate lifestyle (l ,l l ,12).Howel'er, a proportion wall have mcractable symptoms that require further surgical intervention or repeated hospicaliza.tion for more intensive medical therapy.In the authors' experience there is another subgroup of pe<laatnc patients who appear co have relatively mild disease activity and clinacal symptoms and no evidence of com, plications of the underlying disease and yet function extremely poorly in daily activities.This subset of patients appears to have psychological factors which impact negatively on thetr ability to resume a normal lifestyle.Although psychosocial factors clearly do not cause IBO, they may play a sig, nificant role in the clinical course of some patients (13,14).Self-esteem and pre-morbid personality profile may in, fluence clinical outcome (IS).Children who are dependent on the opinion of othe rs to maintain self-esteem are especially vulnera ble (I 6).These children can view chronic intesunal disease as furthe r evide nce of the ir personal inadequacies whic h result in excessive withdrawal, regression and failure to meet developmental tasks.For these indiv iduals and their families the multiple stresses related to a chronic disease must be addressed .For example, physical symptoms including abdominal pain can inc rease with anxiety.The coping ability of children with IBO often reflects parental adjustment and anxieties.Individual andmore frequently in th e pediatnc population -family counsell ing and support provided by able psychiatric and medical social work consultations frequently prove extre me ly va luable (13,17).These support services can play a key role in the restora t ion of family dynamics and the return of functionally disabled patients to a no rmal lifestyle.
For many pa tie nts with IBO, uncertainty and fea rs about the future can provide additional sources of considerable psycho logical stress.Based upon current experience in both children (1 ,11 ,12) and adul ts (1 8, 19), an opumistic and reassuring outlook can be realistically outlined .Factual informauon provided at a level appropriate to cognitive func tion and maturity can reduce these anx ieties and fears by reducing uncertainty and promoting a feeling of control (20).For children and adolescen ts a feeling of control is an adaptive mech anism that successfu 1ly controls powerful emotions and feelings (1 3).When patients (of an y age) assume more control over their ch ronic illness the re are reduc tions in a nxiety and feelings of he lplessness which , if left unchecked , can be associated with poor coping ability.Asking specific questions of the child, rathe r t han gathering all medical information through his or h er parents, is one simple method that allows the pedi atric patient a measure of control over his or her illness.In a n adaptive setting, extensive and deta iled explanations about IBO, its treatment and potential complications a re un likely to be beneficial for children and young adolescents.
In this circ umstance discussion s focused primarily with the parents of the patient are appropria te.As the child ma tures they should, h owever, become more and mo re active in interactions with the health care providers.
Self-help groups such as the Can adian Foundation for Ileitis and Colitis provide education al pamphle ts, books, videocassettes and symposiums which often prove beneficial (2 1).H owever, most of t he available maten als and presentations are not completely suitable for younger child ren and immature adolescents.A presentation of a range of possible complications, even if they are in reality extre mely uncommon , has the potent ial to increase psycho logical stress and an xiety rather tha n provide reassurance.

PARENTS AND THE FAMILY UNIT
O ne of the special aspects of medical care provision co c hildren and ado lescents is the important interactions with both t he patient and his or her pa ren ts.T h e emotional coll on paren ts cannot be underestima ted (22).Pa rental dreams and aspirations fo r their c hild's future can be he ld in question when a ch ronic d isease is ide ntified .T herefore, th e posit ive long t erm outcome for the overwhelming majonty of affected children and adolescents must be emphasized frequently.Often th ere are strong feelings of anxiety, fea r and guilt.As in ma ny other ch ronic d iseases affl ict ing pediatric patien ts, parental stresses can lead to aberran t behavior t hat can negativel y impact on the ch ild's lifestyle.Some pare nts react to their offspring's illness by excessive control, overindulgen ce or excessive restric tions on age-appropriate activ ities.Repeated reassura nces that the ir child's illness has not occurred as a resul t of t he ir actions or lack of intervention are essen t ial.A c the time of initial d iagnosis man y pa ren ts are very concerned that the time interval between the onset of clinical symptoms and diagnosis has been excessive and harmful fo r thei r child.S imila r to the strategy for affected c h ildre n , parental scresse~ anJ resulcmg maladapu ve CAN J GASTROENTEROL VOL 4 No 7 NOVEMBER 1990 LHestyle Issues In children and adolescents parenting skills are usually improved by fac tual education about the underlying intestinal disease.S imila rly, self-he lp groups can provide addltlonal factual information .They can also reduce parental feelings of isolation by providing a focus for interactions wit h people who li ve under similar stressful circumstances.In less responsive circumstances consulta tions with skilled medical social workers and psychia trists can dramatically improve fa mily dynamics.

CONCLUSIONS
In summary, the authors have attempted co provide support fo r the concept that consultative care of ch ild ren and adolescents with both Crohn\ J isease and ulcerative colit is should promote a return to a normal, age-appropriate lifestyle.A focus on psychologic and social stresses and the reduct ion of restrictions in daily rout ines will help co realize chis objective in the overwhelming maiorny of young patien ts.
Several reviews of lBD in the pediatric population support che role of a mult1d1sc1plinary heal ch care team for optimal care ( 11 , l 2).The autho rs support chis approach but ack nowledge chat easily des1gneJ short term and long term studies should be undertake n to document that t here is, 111 reality, an improvement in patien t morbidi ty and functional o utcome wi th che use of wha t is an expensive and labour intensive approach to the prov1s10n of medical care (23).

TABLE 3
Specific concerns of children and adolescents with c hronic inflammatory bowel disease delayed to a lacer date.With social dy,.function this issue may, however, need to be addressed directly.