Modern medicine demands self audit. The process is rarely flattering, and glaring weaknesses become all too evident. A review of 12 interviews of recently bereaved parents is presented here as such an exercise. The paper will not focus on issues of the bereavement reaction itself, which are well covered elsewhere,' -3 but rather on the broader issues raised by contact with the families after their loss. MethodThis is a study of postmortem contact with families over an 18 month period at Booth Hall and the Royal Manchester Children's Hospitals. The families of all 13 children to die on the authors' service over this time were seen and notes made at the time of the interview. The parents involved were contacted by letter about six weeks after the death of their child inviting them to attend the hospital to discuss postmortem findings or any residual worries they might have over their child's last illness. At the time of the death of their child they would have been told to expect this invitation. The interviews were conducted in office surroundings divorced from outpatient or ward activities or, in one case, at the parent's home.Each interview was structured. The format was: an initial discussion of postmortem findings; relation of these to clinical observations and explanations given at the time followed by any questions; enquiry into current feelings and behaviour of parents and siblings; formal counselling/advice as necessary followed by a word on the future, including the introduction of genetic counselling; then a further question session, and closing with an invitation to make contact as required. The social worker concerned would usually make subsequent contact on at least one occasion, and the family doctor was informed of the essence of the interview content.A social worker, attached to the Department of Child Neurology and known to the parents, was present at seven of these interviews and made subsequent contact with four of the remaining six parents. ReportsCase 1. A boy with tuberous sclerosis had developed a glioma. After treatment he was left blind, intellectually handicapped, and with epilepsy. His tumour recurred, and there had been a steady downhill course over two to three months with an increase in frequency of fits and physical handicap to the extent that he became totally dependent. He finally lapsed into coma and was readmitted. His parents stayed by his side for five hours, but he died while they were away taking lunch.The follow up interview went as planned, and the family was coping well with its loss. The parents and teenage daughter got up to leave, and then the father asked to have a private word. His daughter and wife having left, he said that although the other two probably did not suspect he knew that we had hastened the demise of his son while they were at lunch. He was not apportioning blame but was obviously feeling angry. The women were recalled and the matter discussed openly, though it is not clear if we were believed.
Background: Severe and progressive early-onset scoliosis (EOS) has a serious prognosis including cardiopulmonary compromise. Growth-friendly technologies are the current surgical standard of care. Magnetically controlled growing rods (MCGRs) are newer implants with the potential for better quality of life and cost savings; however, they have not been well compared with the traditional distraction-based implants. The objective of this study was to compare the surgical outcomes, complications, metal ion levels, quality-of-life outcomes, and cost of MCGRs with other distraction-based surgical technologies for the treatment of EOS. Methods: The MEDLINE, Embase, and Web of Science databases were searched. Record screening and data abstraction were completed in duplicate. Summary outcomes were calculated in a meta-analysis, if heterogeneity was appropriate, using a fixed-effects model. Results: This systematic review and meta-analysis included 18 studies. MCGRs were as clinically effective as other distraction-based technologies, with no significant difference in the Cobb angle at the latest follow-up (mean difference [MD], 1.20°; 95% confidence interval [CI], −1.80° to 4.20°; p = 0.43) and a significantly lower complication rate (odds ratio, 0.42; 95% CI, 0.25 to 0.71; p = 0.001). Quality of life measured using the EOSQ-24 (24-Item Early-Onset Scoliosis Questionnaire) was better in the MCGR group compared with other technologies (MD, 2.18; 95% CI, 0.40 to 3.95; p = 0.02). Serum titanium levels were 2.98 ng/mL (95% CI, 1.41 to 4.55 ng/mL; p = 0.0002) greater in patients with MCGRs, but the clinical impact is unclear. MCGRs had greater cost for the device and insertion but became cost-neutral or cost-effective compared with other technologies by 4 years postoperatively. Conclusions: MCGRs are clinically equivalent and cost-effective in the long term compared with other distraction-based technologies for the treatment of EOS. Level of Evidence: Therapeutic Level III. See Instructions for Authors for a complete description of levels of evidence.
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