‘Translation is not enough’: using the Global Person Generated Index (GPGI) to assess individual quality of life in Bangladesh,Thailand, and Ethiopia

Currently few subjective measures of Quality of Life (QoL) are available for use in developing countries, which limits their theoretical, methodological, and practical contribution (for example, exploring the relationship between economic development and QoL, and ensuring effective and equitable service provision). One reason for this is the difficulty of ensuring that translated measures preserve conceptual, item, semantic, operational, measurement; and functional equivalence (Herdman, M., Fox-Rushby, J., & Badia, X. (1998). Quality of Life Research, 7, 331), which is illustrated by an account of the translation, pre-piloting, and administration of a new individualised QoL measure, the Global Person Generated Index or 'GPGI'. The GPGI is based on the widely used Patient Generated Index (Ruta, Camfield, & Martin, (2004) Quality of Life Research, 13, 1545.) and offers many of the advantages of the participatory approaches commonly used in developing countries, with added methodological rigour, and quantitative outcomes. It was successfully validated in Bangladesh, Thailand, and Ethiopia, using quantitative and qualitative methods--open-ended, semi-structured interviews (SSIs), conducted immediately post-administration. Both the measure and method of 'qualitative validation' described later in the paper offer an exciting alternative for future researchers and practitioners in this field. The quantitative results suggest the GPGI shows cultural sensitivity, and is able to capture both the areas that are important to respondents, and aspects of life one would expect to impact on QoL in developing countries. There were strong correlation between scores from the GPGI and SSIs for the area of health, and moderate correlations for 'material wellbeing' (MWB)('Material wellbeing' refers to respondents' perceptions of their achievement in the areas of farming, debt reduction, assets, crops, livestock, job, land, property, and agriculture) and children. Weak to moderate correlations were observed between the Satisfaction with Life Scale and the GPGI; however, the highest coefficient was between the GPGI and the most conceptually similar item. Statistically significant differences were seen in GPGI scores between rich and poor, urban and rural respondents, and different countries. Health and material wellbeing scores, derived from the SSIs, also showed a linear relationship with GPGI scores, with a suggestion of curvilinearity at the higher levels, as predicted by a general QoL causal model. In conclusion, the GPGI has great potential for use in this area, especially when supported by extensive interviewer training, and supplemented with a cognitive appraisal schedule.     

Signs of oral dryness in relation to salivary flow rate,pH, buffering capacity and dry mouth complaints

Background  

This study aimed to investigate the signs of oral dryness in relation to different salivary variables and to correlate subjective complaints of oral dryness with salivary flow rate.     

Hypothalamic hamartoma with bilateral anophthalmia

Introduction Hypothalamic hamartomas are congenital malformations. Clinically, they can be asymptomatic, but they cause seizures, mental retardation and precocious puberty in many cases. Case report A 20-day-old boy with hypothalamic hamartoma and bilateral anophthalmia was presented. Except those, no other congenital anomaly was detected. Conclusion This is a rare case of hypothalamic hamartoma with bilateral anophthalmia. The mutations at SOX2 has an important role in the developing brain and eyes.     

Spontaneous disappearance of a suprasellar arachnoid cyst: case report and review of the literature

Introduction Suprasellar arachnoid cysts are uncommon developmental anomalies that are most often diagnosed in childhood. Because the natural history and pathogenesis of these remain poorly defined, optimal treatment guidelines are not yet established.Case report We report a case of spontaneous disappearance of a suprasellar arachnoid cyst that persisted after a ventriculoperitoneal shunt performed 10 years earlier. A 5-year-old boy presented with impaired visual acuity and urinary incontinence. Magnetic resonance (MR) imaging showed a large suprasellar cyst with noncommunicating hydrocephalus. A ventriculoperitoneal shunt was put in place to alleviate current aggravation of hydrocephalus symptoms. Because of the persistent size of the cyst and signs of brainstem compression on a repeat computed tomography (CT), we recommended surgical exploration and decompression. However, the boy’s parents declined any further surgical treatment, and the patient was subsequently lost to follow-up for 10 years. When the patient returned to our clinic at the age of 15 years, a repeat MR scan showed a complete disappearance of the cyst. His family denied any significant interval history.Discussion This case represents only the third reported case of spontaneous disappearance of a suprasellar arachnoid cyst. We discuss possible mechanisms and clinical characteristics of the disappearance of the arachnoid cyst with review of the literature.     

Actin-free Gc globulin: a rapidly assessed biomarker of organ dysfunction in acute liver failure and cirrhosis.

Reductions in serum levels of Gc globulin, a hepatically synthesized component of the extracellular actin scavenger system responsible for complexing circulating actin and attenuating intravascular microthrombus formation, are associated with poor outcome in acute liver failure. Clinically applicable assays of the important actin-free fraction (Af-Gc) have not been available until now. We measured actin-free Gc globulin levels with a novel, rapid assay in 61 cases of acute liver failure (ALF) and in 91 patients with cirrhosis (40 of whom were clinically unstable with extrahepatic organ dysfunction), and studied associations with liver dysfunction, extrahepatic organ dysfunction, indices of disseminated coagulation, and outcome. Reductions in Af-Gc levels mirrored hepatic dysfunction and organ dysfunction in both groups, and discriminated patients with poor prognosis from those with good prognosis in the ALF cohort. Levels were lowest in patients with ALF (10% of control values), but levels were also markedly reduced in both unstable (28%) and stable (44%) patients with cirrhosis. Associations with markers of disseminated intravascular coagulation were seen in both groups, most notably in the cirrhosis cohort, supporting a pathophysiological role for reduced Af-Gc in the evolution of organ dysfunction. In acetaminophen-induced ALF, Af-Gc identified patients with poor prognosis as well as did the Acute Physiology and Chronic Health Evaluation (APACHE II) score (area under the receiver operating characteristic curve, 0.7), and in cirrhosis, Af-Gc was an independent predictor of mortality by multifactorial analysis. In conclusion, the importance of Af-Gc reductions in the development of multiple organ dysfunction in ALF and cirrhosis is highlighted, probably resulting from reduced hepatic production and peripheral exhaustion of this arm of the extracellular actin scavenger system.