This paper was supported by funding from Cancer Research-UK to C.E., A.A.P. and R.R. (C481/A8141). The views expressed are those of the authors. No competing interests declared.
SummaryA survey of 1507 mentally handicapped adults in a long-stay hospital, three-quarters of whom were severely subnormal, led to the identification of 42 (2.8 per cent of the total group) with a current typical affective illness. Non-verbal criteria were used so that such conditions could be recognized at any level. Schizophrenia could be diagnosed only on verbally expressed symptoms and was found in 27 (1.8 per cent) of the patients, none of whom was preverbal in mental level. Forty-one (2.7 per cent) had an atypical affective illness superimposed on an early childhood psychosis. Half of these patients were preverbal, so that the pattern of their illness was particularly difficult to recognize.
A mentally retarded young woman with severe behaviour problems was found to excrete large amounts of glutathione due to a generalized gamma-glutamyl transpeptidase deficiency. As in the only other case described in detail, plasma levels and renal reabsorption of the amino acids were normal. In the parents' urine, plasma and leukocytes, enzyme activity was normal but in their cultured fibroblasts it was below the minimum for the control range. An autosomal recessive mode of inheritance is suggested. The implications of these findings for possible role of the gamma-glutamyl cycle in amino acid transport are briefly discussed.
Sperm banking is routinely offered to men where there is a risk of infertility following cancer treatment but uptake is lower than expected. Since these men may turn to the internet for information, we used the search engine www.google.com to identify the material available about sperm banking and fertility preservation options. Sixty-six resources (NHS/Private Clinic, Charity, Press Releases, General and Forums/Blogs) fulfilled the criteria for inclusion and were examined for quality including readability, layout and content. The most frequently reported information related to: (1) effects of cancer treatment on fertility (77.3%); (2) reasons to bank sperm (69.7%); and (3) fertility recovery after treatment (57.6%). Information about maintaining contact with the sperm bank (18.2%) and disposal of banked samples (10.6%) was less often included. The quality of information available on the Internet about sperm banking was variable. The readability of all resources was assessed as 'fairly difficult', i.e. reading skills required were too complex for the average member of the public to understand. Furthermore, visual presentation of material (e.g. lay out) did not facilitate easy reading. More attention should be given to information about longer-term issues, such as fertility recovery and the use or disposal of banked sperm.
The use of primary care services by three matched groups of people with intellectual disabilities was compared over a period of one year. Differences in the patterns of provision were detected between hospital intellectual disability specialists and general practitioners. The degree of behavioural disturbance and disability of the subjects were found to be the most important predictors of primary care contact.
Introduction: Improvements in cancer survival rates for teenagers and young adults (TYAs) have resulted in quality-of-life issues into survivorship becoming increasingly important. However, infertility is a potential late side effect of cancer treatment, which can negatively impact on quality of life. Advances in assisted reproductive technologies have resulted in increasingly effective fertility preservation (FP) options. Purpose: This study aimed to explore nurses' experiences of undertaking fertility-related discussions with TYAs with cancer aged 13-24 years. Methods: An interpretive phenomenological analysis (IPA) approach was used. Eleven purposively selected nurses working on a specialist TYA cancer unit participated in semistructured interviews. Data were analyzed using IPA. Results: Parents/family were experienced as self-appointed informal gatekeepers who were perceived to hold the power to control nurses' access to communicate with young people about fertility issues. Nurses adopted a supportive role, which was enhanced by the positive nature of their relationship with the TYA. Uncertainty was expressed over whether the TYA had been fully informed of their infertility risk and potential FP options. Conclusions: Nurses should manage parental involvement sensitively if TYAs are to make informed decisions regarding their future reproductive health. There is a need for clear role delineation in fertility discussions to ensure that TYAs are provided with the opportunity to discuss infertility risk and be referred to a specialist before initiating cancer treatment. Nurses should cultivate the primacy of the nurse-TYA relationship to improve fertility care. Further research into the factors that TYAs may consider beneficial within the nursepatient relationship is required.
Ongoing education and support for nurses may ensure teenage and young adult cancer patients' reproductive needs are met. Nurses need to consider ways to ensure female patients benefit from improved information regarding infertility risks and preservation options to support their reproductive needs.
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