Neglect of growth and development in the clinical monitoring of children and teenagers with inflammatory bowel disease: review of case records

Failure of growth and retarded sexual development are serious and common problems in children and teenagers with inflammatory bowel disease, particularly Crohn’s disease. Thus height, weight, sexual staging, and bone age should be closely monitored in such patients. In 1989 we reported serious underrecording of these variables of growth in a cohort of Scottish children with inflammatory bowel disease.¹ We assessed the situation a decade later.

Subjects, methods, and results

We studied 28 boys and 13 girls aged ⩽16 years at first admission to hospital with ulcerative colitis (n=14) or Crohn’s disease (n=27). These patients, identified from the Scottish hospitals database of inpatients statistics for 1984-88, were resident in four of the Scottish regions.

We reviewed the patients’ case records and noted whether height, weight, bone age, and sexual development were recorded. The frequencies of recording of these variables of growth were analysed by specialty of consultant. Since 14 (34%) of the patients were attending one consultant’s (A) clinic, the frequencies of recording by this consultant were considered separately.

The table summarises the results. With the exception of consultant A, gastroenterologists, physicians, and surgeons made few recordings of height, and very few recordings of bone age or sexual development were made by any specialty, including paediatricians.

Comment

The causes of Crohn’s disease and ulcerative colitis are unknown, but abundant evidence supports the clinical illness as being a composite effect of several variables both symptomatic and indolent. These include inflammatory disease activity, side effects of drugs, psychological distress, destructive ulceration, bone demineralisation, and growth failure. Growth failure is not confined to patients of paediatricians as growth and sexual maturation of young people with Crohn’s disease often continue until age 20 or later. Despite this, few consultants in adult medicine or surgery record the physical development of teenage patients; perhaps the doctor assumes nothing specific can be done about growth failure, or this neglect may simply be an oversight.

We do not know if such neglect is unique to gastroenterologists, or whether similar findings would have emerged from studying the case records of teenagers with cancer, renal failure, asthma, rheumatic diseases, or diabetes. A Royal College of Physicians Working Group on the transfer of young people with chronic physical disorders from paediatric to adult services has made 34 recommendations on health related aspects of transfer of care,² but the recording of growth and pubertal status are not mentioned.

Nutritionists may argue that accurate clinical measurement is a cornerstone of knowledge of the physiology and pathology of growth. Clinical investigators may emphasise that research on the pathogenesis and treatment of growth failure in disease requires accurate historical as well as prospective data. Psychologists, and probably most clinicians, patients, and parents, may agree that a patient’s problems cannot be understood fully without recognition and discussion of physical and sexual differences between patients and their peers. Thus we reiterate¹ that consultants treating young people with inflammatory bowel disease need to be more aware of their patients’ special nutritional and developmental problems, and should make regular measurements of the variables of growth.

Table.

Recording of height, weight, bone age, and sexual development by consultants during hospital based care of young people with inflammatory bowel disease (mean follow up, 7.1 years)

Type of consultant	No of consultants	No of patients*	Median No of visits per patient (range)	Total No of visits	Median percentage of visits			No of patients
					Height recorded (range)†	Weight recorded (range)		Bone age ever recorded	Sexual development ever recorded
Gastroenterologist (consultant A)	1	14	23 (11-39)	313	51 (16-67)	92 (63-100)		12	13
Physician gastroenterologist	6	10	16 (4-27)	156	18 (0-50)	79 (50-100)		1	3
General surgeon	8	14	6 (2-31)	157	16 (0-60)	33 (0-100)		1	1
General physician	6	7	13 (3-30)	105	22 (0-67)	89 (14-100)		0	3
Medical or surgical paediatrician	7	17	19 (3-56)	386	89 (6-100)	93 (12-100)		1	3 (of 15 eligible)‡

^*21 patients in care of more than one consultant.  

^†Some patients reached adult height.  

^‡Two patients aged <10 years were excluded.