Growth in renal failure: a longitudinal study of emotional and behavioural changes during trials of growth hormone treatment.

Growth and psychological functioning were studied in 30 patients with renal failure over a two year period following the offer of growth hormone treatment for significant short stature. Parents' concerns about growth decreased significantly during the study. Twenty eight parents (93%) accepted growth hormone treatment; most (74%) were satisfied with it and would opt for it again (89%). The views of these parents were unrelated to growth outcome in their child. This suggests that the positive responses were related more to the effort to improve growth than to any objective treatment success. In contrast children's reduction in concern about growth, satisfaction with treatment (36%), and decision to opt for growth hormone again (50%) were all significantly related to improvement in growth. Parents' reports of non-compliance increased significantly from 41% at 1 year to 91% at 2 years in the group as a whole. No significant changes were identified in maternal mental distress and no additional costs to the psychological health of the children seem to have resulted from the introduction of growth hormone treatment. A group of children was identified who accepted treatment but had continued poor growth. These appeared to be at particular risk of both physical problems and associated or consequent psychological difficulties.

Recruiting patients to clinical trials: lessons from studies of growth hormone treatment in renal failure.

Issues raised by the recruitment of children to trials of growth hormone treatment for short stature in chronic renal failure are reported. Information needs of parents and children are discussed, the latter should take account of the children's developmental level and anticipated involvement in decision making. When the incidence of certain side effects is low and probably unquantifiable there are particular problems; failure to include these in information sheets may compromise informed consent but inclusion will, at least for some families, make an already difficult decision even more complicated. A process of recruitment is described which attempts to protect against bias and which balances the requirement to impart neutral information with appropriate clinical involvement in the decision to enter the study. Other functions of the recruitment process are identified. Analysis of understanding and decision making demonstrates that good understanding is neither necessary nor sufficient for ease of decision making. The recruitment process was time consuming and needs planning and funding in future studies. Many of these issues are of general importance for trials of treatment in children.

Short stature and chronic renal failure: what concerns children and parents?

Multicentre trials are evaluating growth hormone treatment in short children (height > 2 SDs below mean) with chronic renal failure (CRF), on dialysis, or with a transplant. Thirty children and parents from four centres were interviewed to assess psychological functioning and evaluate their concerns about growth in the context of CRF. There were 24 males and six females, age range 2-18 years. Fifty per cent of patients had additional non-renal complications and 30% had learning difficulties. Differences between the respective concerns of parents and children were striking. Parents' predominant concern was their child's future health (50%) and prospects (37%) while children's main concern was the impact of illness on their family (50%). Growth was a major concern for 30% of parents and 28% of children. Growth problems are important and should be considered within the context of other illness issues. Improved understanding of parental and child concerns may help maximise the benefits of growth hormone and assist in the management of children with CRF.

Factitious illness: recognition and management.

An analysis of Munchausen syndrome by proxy is proposed, which involves a categorisation of parental behaviour in terms of desire to consult and ability to distinguish the child's needs from parents' own needs. The Munchausen syndrome by proxy case is proposed as one extreme of a much broader and commoner group for which the term factitious illness is used. An outline of assessment and investigation is given, applicable to all degrees of factitious illness, together with a model of collaboration between paediatrician and child psychiatrist. The role of the child psychiatrist is described. Collaboration results in a broader analysis of the situation which facilitates understanding and points the way to appropriate intervention.

Final height in girls with untreated constitutional delay in growth and puberty.

During a 10-year period, 23 girls compared to 118 boys presented with constitutional delay in growth and puberty. Of these girls, 15 were followed to final height to determine the outcome of the untreated condition in terms of both growth and psychological well-being. At presentation chronological age was 13.2 (1.7) years [mean (S.D.)], bone age delay 2.7 (0.9) years, standing height standard deviation score (SDS) -3.4 (0.9), and predicted adult height (PAH) SDS -1.3 (0.7) (Tanner-Whitehouse II method). Final height SDS was -1.5 (0.8) measured at 18.9 (2.6) years of age. Mean age at menarche was 15.6 (0.9) years. There was no significant difference between final adult height (FH) and PAH but there was a significant difference between FH and target height (P less than 0.001). Psychological questionnaires revealed no significant difference in self-esteem, marital or employment status between the patient and control groups. There was no significant correlation between self-esteem and FH but 80% felt their growth delay had affected success either at school, work or socially. Of the patients, 50% would have preferred treatment to advance their growth spurt. This study demonstrates that girls with constitutional delay in growth and puberty reached their PAH, although this was lower than the midparental heights. The girls also experienced significant distress due to delayed growth and puberty and treatment to advance growth should be considered more frequently.

Final height in boys with untreated constitutional delay in growth and puberty.

To determine the natural history and psychological impact of the growth pattern in boys with constitutional delay in growth and puberty (CDGP), 43 boys presenting with short stature due to CDGP were followed up to final height. At presentation mean (SD) chronological age was 14.0 (1.9) years, bone age delay 2.7 (1.0) years, standing height standard deviation score (SDS) -3.4 (0.6), and predicted adult height SDS -1.3 (0.7). Final adult height SDS was -1.6 (0.9), measured at 21.2 (2.6) years. There was no significant difference between final height and predicted adult height, but there was a significant difference between final height and measured mid-parental height. Psychological questionnaires showed no significant difference in self esteem, marital, or employment state between the CDGP group and a control group. There was no correlation between self esteem and final height, but 25 felt their growth delay had affected their success either at school, work, or socially and 20 would rather have had treatment to advance their growth spurt. This study supports the more frequent use of active medical treatment to advance growth in boys with CDGP, and shows that although boys with CDGP reach their predicted heights, this is short for their families.