Findings from this study illuminate the diverse effects of CTCL on patients' lives. The universal experience of delays in diagnosis was striking and a concern to patients. The disease, particularly its physical symptoms, had a significant impact on patients' lives, including employment, leisure and relationships. Despite the symptom burden and its impact, participants described effective coping strategies such as drawing on social support, maintaining normal lives and becoming well informed about CTCL. Proactive holistic assessment and management of the range of patient concerns is needed in providing care for patients with CTCL and their family and friends.

Long-term follow-up studies of individuals with galactosaemia have indicated that despite a strict galactose-free diet, cognitive functioning is often below average. This study was designed to examine the neuropsychological profile of individuals with galactosaemia in terms of IQ, memory, executive functioning, perceptual abilities and educational outcome. Twenty-eight people with classic galactosaemia and no comorbid neurological or psychiatric disorder took part. A battery of clinical neuropsychological tests was performed. Overall, findings were consistent with previous literature in showing galactosaemia to be linked to below-average functioning across a range of cognitive measures when mean scores were examined. Thus, the mean overall scores for verbal and performance IQ, memory, and executive functions were in the low average range. However, a range of ability was represented across individuals, with some achieving average or above scores and education to A level or above. Further work using longitudinal methodology is needed to address the issue of factors mediating any cognitive weaknesses and to establish the extent of any possible decline in functioning over time.

Our findings demonstrate the multiple demands that CTCL places on caregivers, the capabilities and resources they draw upon to cope, and the significant impact of CTCL on the family. To support families and patients, easily accessible services are needed that include the family in the unit of care, provide support and information, and understand the process of family adjustment and adaptation.

No measure is routinely used to measure supportive and palliative care outcomes in CTCL. Physical needs, particularly pruritus, were reported commonly; however, qualitative evidence of experience is limited. Caregivers' needs are rarely explored. To compare outcomes from clinical studies, a single multidimensional tool used in routine practice would be useful. Further work is needed to explore a model of service that meets the specific physical, psychosocial and spiritual needs of this group of patients and their carers.