Table 1

Patients with undetectable metabolites: doctor’s assessment of possible reasons for non-compliance

Patient NoAge (years)Likely non-compliant?Possible reason for non-compliance
112YesTablets made her feel ill and were a daily reminder that she had cancer
25YesParents had idiosyncratic views about treatment
315YesLack of motivation/supervision
47PossibleLack of supervision/chaotic family
55YesDifficult family circumstances with frequent social work input
611NoNo obvious problem
714YesSchool and behavioural problems. Admitted to not taking tablets
8 18YesFed up with treatment, wanted to be ‘normal’. Refused bone marrow  transplantation. Was on prolonged maintenance treatment
96YesComplex social situation. Family accepted that treatment not given. Maternal  grandmother blamed