The association of race, cultural factors, and health-related quality of life in persons with spinal cord injury

Myaskovsky L, Burkitt KH, Lichy AM, Ljungberg IH, Fyffe DC, Ozawa H, Switzer GE, Fine MJ, Boninger ML. The association of race, cultural factors, and health-related quality of life in persons with spinal cord injury.

Objective

To examine the association of race and cultural factors with quality-of-life factors (participation, life satisfaction, perceived health status) in people with spinal cord injury (SCI).

Design

Cross-sectional multisite study using structured questionnaires.

Setting

Six National SCI Model Systems centers.

Participants

People with SCI (N=275; age ≥16y; SCI with discernable neurologic impairments; used power or manual wheelchair for >1y as primary means of mobility; nonambulatory except for exercise purposes).

Interventions

None.

Main Outcome Measures

Participation (Craig Handicap Assessment and Reporting Technique Short Form); satisfaction (Satisfaction With Life Scale); and perceived health status (2 items from 36-Item Short Form Health Survey).

Results

African American (n=96) with SCI reported more experiences of discrimination in health care, greater perceived racism, more health care system distrust, and lower health literacy than whites (n=156; P range, <.001–<.05). Participants who reported experiencing more discrimination in health care reported better occupational functioning (odds ratio [OR], 1.5; 95% confidence interval [CI], 1.07–2.09; P<.05). Those who perceived more racism in health care settings reported better occupational functioning (OR, 1.65; 95% CI, 1.12–2.43; P<.05) and greater perceived health (β=.36; 95% CI, .05–.68; P<.05). Those who reported more distrust in the health care system reported better current health compared with 1 year ago (β=.38; 95% CI, .06–.69; P<.05). Those who reported better communication with their health care provider reported higher levels of mobility (OR, 1.5; 95% CI, 1.05–2.13; P<.05) and better general health (β=.27; 95% CI, .01–.53; P<.05).

Conclusions

In this cross-sectional study of people with SCI, higher levels of perceived discrimination and racism and better communication with health care providers were associated with an increase in participation and functioning and improvements in perceptions of well-being. These associations are different from those reported in other study populations and warrant confirmation in future prospective studies.     

The JAK2V617F allele burden and STAT3- and STAT5 phosphorylation in myeloproliferative neoplasms: early prefibrotic myelofibrosis compared with essential thrombocythemia, polycythemia vera and myelofibrosis

Early prefibrotic myelofibrosis (early PMF) is a diagnosis that clinically and histologically mimic essential thrombocythemia (ET), but is important to distinguish from ET, polycythemia vera (PV) and primary myelofibrosis (PMF) due to its different prognosis and clinical evolution. In this study, we assessed the allele burden of JAK2V617F in bone marrow biopsies from patients with these chronic myeloproliferative neoplasms. We correlated our findings with the amount of phosphorylated STAT3 (P-STAT3) and STAT5 (P-STAT5) in megakaryocyte nuclei in the bone marrow. The JAK2V617F allele burden was significantly higher in patients with PV (median: 50.99, range: 23.08-97.29, p < 0.01 and p < 0.01) and PMF (median: 44.13, range: 33.61-92.17, p < 0.05 and p < 0.01) compared with a low allele burden in ET (median: 23.465, range: 8.67-47.92) and early PMF (median: 25.68, range: 0.61-49.13) respectively. In addition, we found a significantly higher phosphorylation of STAT5 and STAT3 in the JAK2V617F positive group than in the negative group. There was no positive correlation between increasing JAK2V617F allele burden and the amount of P-STAT3 and P-STAT5. However, we found low values of P-STAT5 in bone marrow biopsies from patients with ETJAK2V617F+ as compared with patients with early PMFJAK2V617F+. Although this difference was statistically significant, larger studies are needed to firmly support this conclusion.     

Women's experience of postpartum psychotic episodes--analyses of narratives from the internet

The aim of this study was to gain an insight into women's experiences of postpartum psychosis (PPP). Ten narratives taken from the Internet, which met the definition of PPP, were analyzed using cross-case and content analyses. The results revealed women's experience of having unfulfilled dreams, being enveloped by darkness, having disabling symptoms, and being abandoned. The women's experiences point to the importance of further education of nurses and doctors concerning PPP. It is vital not only for those working in psychiatric health care but also midwives and nurses who are working in maternity wards and child welfare centers. This would facilitate early recognition of signs and symptoms of the disorder, which, in turn, would make early treatment possible, thus supporting recovery. Furthermore, greater knowledge could contribute to providing more effective and compassionate care for these women.     

Balint training makes GPs thrive better in their job

In this study, we examined Balint group participants' sense of control and satisfaction in their work situation and their attitudes towards caring for patients with psychosomatic problems. Forty-one GPs filled in a questionnaire with a 10-point visual analogue scale. Of these, 20 had participated in Balint groups for more than one year and 21 were a reference group. The Balint physicians reported better control of their work situation (e.g. taking coffee breaks and participating in decision making), thought less often that the patient should not have come for consultation or that psychosomatic patients were a time-consuming burden, and were less inclined to refer patients or take unneeded tests to terminate the consultation with the patient. These results might indicate higher work-related satisfaction and better doctor-patient relationship.     

Hereditary motor neuron disease in a large Norwegian family with a "H46R" substitution in the superoxide dismutase 1 gene

Mutant genes associated with Charcot Marie Tooth type 2, distal hereditary motor neuropathy and familial amyotrophic lateral sclerosis may cause overlapping clinical phenotypes. We performed whole genome linkage analysis, haplotype analysis, sequencing and detailed clinical and neurophysiological investigations in a large Norwegian kindred with a condition that clinically had been classified as Charcot Marie Tooth type 2. The mutation c.140A>G, p.His47Arg (alias p.His46Arg or H46R) in the superoxide dismutase 1 gene (SOD1) segregated with the disease. The patients present a hereditary motor neuropathy-like clinical picture and long survival (mean 29years). To our knowledge, this is the first extensive report describing a large non-Japanese kindred. The prognostic implications of the condition seen in this family have little in common with what is normally associated with sporadic amyotrophic lateral sclerosis and illustrates the complexity of the genetic etiology of lower motor neuron disease.