Children's and parents' beliefs regarding the value of walking: rehabilitation implications for children with cerebral palsy.

BACKGROUND: Walking for children with cerebral palsy (CP) has physiological and functional benefits, but also holds symbolic significance that largely remains unexplored. The aims of this pilot study were to describe beliefs about the value of walking held by children with CP and their parents, and to examine how these beliefs inform rehabilitation choices and perceptions of 'success'. METHODS: A critical qualitative design was employed. Six parents and six children with CP (Gross Motor Function Classification System III or IV, aged 9 to 18 years) each participated in a private interview. Analyses examined the relationship between dominant social beliefs regarding walking and participants' accounts. RESULTS: Parents' accounts revealed that all adopted a stance of doing something/trying anything as part of being a 'good parent' and maintaining hope. Tapering of walking interventions contributed to feelings of guilt and doubt. Children primarily viewed walking as exercise rather than functional. Their accounts also demonstrated how they internalized negative attitudes towards disability and judged themselves accordingly. CONCLUSIONS: The results of this pilot study provide provisional evidence regarding how dominant social values regarding walking and disability are taken up by parents and children. They suggest that rehabilitation programmes need to consider how they may unintentionally reinforce potentially harmful choices, and how best to engage families in discussions of their evolving values and treatment priorities. Further research is needed with a larger sample.

The obligation to say 'Thank you': heart transplant recipients' experience of writing to the donor family.

Transplant recipients are encouraged to write anonymous thank-you letters to the donor family. We prospectively explored heart transplant recipients' embodied responses to the 'obligation' to write a thank-you letter using audio/video-taped open-ended interviews (N = 27). Fifteen of the 19 participants, who wrote letters to the donor family, expressed or visually revealed significant distress about issues such as the obligation to write anonymously and the inadequacy of the 'thank-you'. Writing the thank-you letter is not a neutral experience for heart transplant recipients. Rethinking the obligatory practice regarding the thank-you letter and developing the necessary support for the recipient through this process is necessary.

Metabolic alterations: a biomarker for radiation-induced normal brain injury-an MR spectroscopy study.

PURPOSE: To assess if interval changes in metabolic status in normal cerebral tissue after radiation therapy (RT) can be detected by 2D CSI (chemical shift imaging) proton spectroscopy. MATERIALS AND METHODS: Eleven patients with primary brain tumors undergoing cranial radiation therapy (RT) were included. 2D-CSI MRS was performed before, during, and after the course of RT with the following parameters: TE/TR 144/1500 ms, field of view (FOV) 24, thickness 10 mm, matrix 16 x 16. The metabolic ratios choline/creatine (Cho/Cr), N-acetylaspartate (NAA)/Cr, and NAA/Cho in normal brain tissue were calculated. RESULTS: NAA/Cr and Cho/Cr were significantly decreased at week 3 during RT and at 1 month and 6 months after RT compared to values prior to RT (P < 0.01). The NAA/Cr ratio decreased by -0.19 +/- 0.05 (mean +/- standard error [SE]) at week 3 of RT, -0.14 +/- 0.06 at the last week of RT, -0.14 +/- 0.05 at 1 month after RT, and -0.30 +/- 0.08 at 6 months after RT compared to the pre-RT value of 1.43 +/- 0.04. The Cho/Cr ratio decreased by -0.27 +/- 0.05 at week 3 of RT, -0.11 +/- 0.05 at the last week of RT, -0.26 +/- 0.05 at 1 month after RT and -0.25 +/- 0.07 at 6 months after RT from the pre-RT value of 1.29 +/- 0.03. Changes in Cho/Cr were correlated with the interaction of the radiation dose and dose-volume at week 3 of RT, during the last week of RT (P < 0.005), and at 1 month after RT (P = 0.017). CONCLUSION: The results of this study suggest that MRS can detect early metabolic changes in normal irradiated brain tissue.

Troubling dimensions of heart transplantation.

Heart transplantation is now the accepted therapy for end-stage heart failure that is resistant to medical treatment. Families of deceased donors routinely are urged to view the heart as a "gift of life" that will enable the donor to live on by extending and sustaining the life of a stranger. In contrast, heart recipients are encouraged to view the organ mechanistically-as a new pump that was rendered a spare, reusable part when a generous stranger died. Psychosocial and psychoanalytic research, anecdotal evidence and first-person accounts indicate that after transplant, many recipients experience unexpected changes or distress that cannot be understood adequately using biomedical explanatory models alone. In this paper it is argued that phenomenological philosophy offers a promising way to frame an ongoing empirical study that asks recipients to reflect on what it is like to incorporate the heart of another person. Merleau-Ponty and others have posited that any change to the body inevitably transforms the self. Hence, it is argued in this paper that replacing failing hearts with functioning hearts from deceased persons must be considered much more than a complex technical procedure. Acknowledging the disturbances to embodiment and personal identity associated with transplantation may explain adverse outcomes that heretofore have been inexplicable. Ultimately, a phenomenological understanding could lead to improvements in the consent process, preoperative teaching and follow-up care.

Focal nodular hyperplasia in a child with hemihypertrophy and multiple cutaneous vascular malformations.

A case of focal nodular hyperplasia of the liver occurring in a 9-year-old girl with musculoskeletal hemihypertrophy and multiple cutaneous capillary haemangiomata is described. The child presented because of limb length discrepancy and was found to have a large mass in the liver. Imaging showed a mass of similar characteristics to normal liver tissue. Prominent vascular supply to the liver was also seen. We present this case to emphasize the important diagnosis of focal nodular hyperplasia, which may occur in syndromic form in children with typical cutaneous and skeletal manifestations.

Sacrococcygeal teratomas: the UK Children's Cancer Study Group's experience. I. Neonatal.

The aim of this study was to review the United Kingdom Children's Cancer Study Group (UKCCSG) experience of sacrococcygeal teratomas (SCT) including histological presentation, response to surgery and chemotherapy, and long term effects of the tumour and treatment. This paper presents the results for those children diagnosed during the neonatal period. Children aged up to 4 weeks with biopsy proven localised or metastatic sacrococcygeal germ cell tumours were eligible. From 1st January 1989 to 31st December 1997 (9 years), 15 UKCCSG centres registered 51 neonates with SCT into GC 8901. Surgery alone was performed in all and the prognosis was good - except for 1 baby who died from massive haemorrhage at the initial operation and 1 who died from the complications of prematurity. Seven of the 51 children (14%) who had teratomas in the neonatal period (5 mature, two immature) had yolk sac tumour (YST) recurrence at: 4, 12, 15, 20, 20, 28 and 32 months of age. These children received chemotherapy in the form of etoposide/bleomycin/carboplatin (JEB) and are alive and well at review. These results emphasise the need for oncological follow-up of SCT and the good response to JEB chemotherapy of malignant teratomas and YST.

Parasagittal ependymoma resembling falcine meningioma.

Presentation, diagnosis, and management of an unusual parasagittal ependymoma, radiographically resembling a falcine meningioma, are described. Despite its radiographic appearance, pathologic evaluation revealed classic features of an ependymoma. The radiographic and pathologic characteristics of this unusual lesion are briefly examined, and the literature is reviewed. Although extraaxial ependymomas are rare, they should be considered in the radiographic differential diagnosis of dural-based lesions, especially for patients within the first 3 decades of life.

Proliferation index is related to patient age in glioblastoma.

Younger patients with glioblastomas have a significantly better prognosis than do older patients. To determine whether patient age might be related to proliferation of glioblastoma cells, glioblastomas from patients of different ages were stained with the Molecular Immunology Borstel number 1 antibody to detect proliferating cells. Younger patient age was a significant predictor of a low Molecular Immunology Borstel number 1 proliferation index (p = 0.0001). This previously unreported association favors an intrinsic difference in the type of glioblastomas that afflict younger patients.

Home care in Canada: passing the buck.

This paper provides an overview of Canadian home-care utilization, highlights the health-policy assumptions that have resulted in an increasing reliance on in-home services, and assesses the current roles of the private and public sectors in the financing of home care. Significant interprovincial variations in per capita home-care expenditures and potential inequalities in access to home care call for resolution by federal and provincial governments. There is a need for consensus with respect to medically and socially necessary services that are subject to national standards, irrespective of the setting in which services are sought, received, and delivered. The development and enforcement of national home-care standards that complement the principles of the Canada Health Act would be a useful first step in ensuring that the Canadian health-care system is ready to confront the challenges of the new millennium.

Somatic von Hippel-Lindau gene mutations detected in sporadic endolymphatic sac tumors.

Endolymphatic sac tumors (ELSTs) occur sporadically or in association with an autosomal dominantly inherited tumor syndrome, von Hippel-Lindau (VHL) disease. In VHL disease, a germline mutation of the VHL tumor suppressor gene is inherited, and loss of function of the wild-type allele occurs through genetic deletion with subsequent development of neoplastic growth. Genetic alterations associated with sporadic ELSTs are less well understood. In this study, we used tissue microdissection to selectively analyze neoplastic cells from four sporadic ELSTs. In two cases, we detected somatic mutations involving VHL gene exons 1 and 2, respectively. Additionally, one of these cases revealed deletion of the VHL gene locus. Two cases did not reveal VHL gene mutation; one of these two cases showed VHL gene deletion. These results suggest that mutations and allelic deletions of the VHL tumor suppressor gene play a role in the tumorigenesis of sporadic ELSTs.

The United Kingdom Children's Cancer Study Group's second germ cell tumor study: carboplatin, etoposide, and bleomycin are effective treatment for children with malignant extracranial germ cell tumors, with acceptable toxicity.

PURPOSE: To evaluate carboplatin, etoposide, and bleomycin (JEB) in children with malignant extracranial germ cell tumors (GCTs). PATIENTS AND METHODS: Malignant GCTs in children aged 0 to 16 years were excised without major morbidity or otherwise biopsied. Stage I testicular and some ovarian GCTs were resected and monitored with alpha-fetoprotein (AFP) ("watch-and-wait" approach). Patients with recurrent stage I disease and all other patients received JEB (etoposide 120 mg/m(2) on days 1 through 3, carboplatin 600 mg/m(2) on day 2, and bleomycin 15 mg/m(2) on day 3). Courses were administered every 3 to 4 weeks until remission, and then two more courses were given. Chemotherapy toxicities were assessed using World Health Organization or Brock grading. RESULTS: Between January 1989 and December 1997, 192 patients were registered. Eight were excluded because either there was no histologic diagnosis (n = 3) or chemotherapy was given off-study (n = 5). The remaining 184 patients had germinoma (n = 20), malignant teratoma (n = 55), embryonal carcinoma (n = 1), yolk sac tumor (n = 107), or choriocarcinoma (n = 1). Forty-seven patients were treated with surgery alone, and 137 patients received JEB. The 5-year survival rate in March 1999 for all 184 patients was 93.2% (95% confidence interval [CI], 87.9% to 96.3%); for the 137 JEB-treated patients, it was 90.9% (95% CI, 83.9% to 95.0%), with an event-free survival rate of 87.8% (95% CI, 81.1% to 92.4%). The median follow-up after JEB treatment was 53 months (range, 0 to 109 months); the median number of courses was five (range, three to eight). Site, stage, and AFP level had prognostic significance. Nonfatal hematologic toxicity was common, but deafness and pulmonary and renal toxicities were rare. One child died of a thoracic tumor and bronchopulmonary dysplasia, and another died of acute myeloid leukemia. CONCLUSION: Conservative surgery, a watch-and-wait approach after complete excision, and JEB for those requiring chemotherapy produced high cure rates and few serious complications.

Relationships between nurses and family caregivers: partners in care?

Increasing reliance on family care of elderly people at home calls for a critical analysis of the relationship between formal and informal caregivers. Although much has been written about how health professionals and family caregivers should relate to one another, we know very little about the relationships that develop between them. Using data from a qualitative study, this article illustrates that relationships between community nurses and family members caring for frail elders are complex, dynamic, and multifaceted. Shifting boundaries in caring work leads to changes in nurse-family caregiver relationships, which can be categorized as four distinct, yet interconnected, types: (1) nurse-helper, (2) worker-worker, (3) manager-worker, and (4) nurse-patient. Each type is described, and implications for nursing practice and research are discussed.

Extracranial metastatic meningioma.

Meningiomas rarely metastasize outside the intracranial compartment. We report a case of disseminated metastases from a recurrent intracranial meningioma and review the imaging and pathological literature on metastatic meningioma.

Laryngeal atresia or stenosis presenting as second-trimester fetal ascites--diagnosis and pathology in three independent cases.

Congenital atresia of the larynx is a rare abnormality. We describe three cases where prenatal diagnosis during the second trimester showed massive abdominal fetal ascites and at post-mortem, laryngeal atresia was identified in two cases, and severe laryngeal stenosis in the third. All were associated with pulmonary hyperplasia. No additional abnormalities were found in other systems. Overdistended lung tissue and ascites are resultant from aberrant laryngeal growth; laryngeal anomalies are a cause of isolated fetal ascites. The association of ascites and voluminous lungs should arouse suspicion of laryngeal atresia and should be an indication for careful pathological study of the fetal larynx.

MIB-1 proliferation index predicts survival among patients with grade II astrocytoma.

The purpose of this study was to determine whether a relationship existed between MIB-1 labeling index (LI) percentages and survival in patients with grade II astrocytomas. From archival paraffin-embedded surgical specimens of 50 patients of the University of Michigan Medical Center with World Health Organization grade II astrocytomas, 22 patients had a Ki-67 LI of less than or equal to 2.0; and 28 patients had a MIB-1 LI of more than 2.0. Over a median follow-up interval of 10 years, ranging up to 16 years, 23% (n = 5) died of tumor in the first group while 82% (n = 23) died in the second group, a distinct difference in survival between these groups. Univariate analysis showed that a high MIB-1 predicted shorter survival (p < 0.0001), and that increased age was associated with shorter survival (p = 0.007). Gender, tumor location and radiotherapy had no significant association with survival. When adjusting for these (excluding tumor location) in the Cox proportional hazards model simultaneously, MIB-1 and age were independently prognostic. The hazard ratios were 1.301 per 1% MIB-1 LI (p = 0.0001), and 1.045 per year of age (p = 0.0028). From other studies, we know that histopathologic grade and age predict survival for glioma patients. However, even within grade II astrocytomas there is still a wide heterogeneity in how long a patient survives. We conclude that among grade II astrocytomas older patients and, independently, patients with higher MIB-1 labeling index have shorter survival.

Mothers' experiences caring for children with disabilities who require a gastrostomy tube.

In this qualitative study, mothers' experiences of feeding children with severe disabilities by a gastrostomy tube are described. Twelve mothers each participated in one, open-ended, home interview. Mothers gave detailed accounts of their activities and the tremendous stress involved in feeding the children. They described spending enormous time and energy seeking confirmation of the feeding problem and devising extraordinary practices to ensure the child's survival before "giving in" to the gastrostomy tube. Following gastrostomy tube insertion, they initially felt relief and disappointment, before customizing feeding and moving on. Mothers' suggestions for improving professional services are discussed along with implication for practice and research.