Measuring Health-Related Quality of Life of Adults With Down Syndrome.

This study examined self- and caregiver-reported health-related quality of life (HRQOL) of 60 adults with Down syndrome (DS) using the QualityMetric Short Form-12 version 2 (SF-12v2). All HRQOL scores exceeded means and fell within one standard deviation of the SF-12v2 normative sample. Similarities between eight self- and caregiver-reported HRQOL scales were found with the exception of role physical scores (impact of health problems on typical accomplishments), which were lower when obtained by caregiver-report. A positive association was found between self- and caregiver-reported physical functioning scores (impact of health problems on physical activity). The SF-12v2 had high construct validity in this study. These findings support the feasibility of measuring HRQOL of adults with DS using self-report rather than reliance on caregiver-report.

Factors Affecting Health-Related Quality of Life in Children Undergoing Curative Treatment for Cancer: A Review of the Literature.

BACKGROUND: Health-related quality of life (HRQoL) is an important measure to evaluate a child's reported treatment experience. Although there are numerous studies of HRQoL in children undergoing curative cancer treatment, there is limited literature on factors that influence this. OBJECTIVE: To review published studies that describe the HRQoL and associated factors in children undergoing curative cancer treatment. METHOD: Full-text publications in English from January 2005 to March 2013 were searched in PubMed, PsychINFO, and CINAHL for children ≤18 years of age undergoing curative cancer treatment. HRQoL-associated factors were categorized as cancer diagnosis, treatment, child, family, and community. RESULTS: Twenty-six studies met the inclusion criteria. The most frequently used generic and cancer-specific instruments were PedsQL (Pediatric Quality of Life Inventory) Generic and PedsQL Cancer, respectively. Cancer diagnosis and treatment were the most frequently identified variables; fewer studies measured family and community domains. Gender, treatment intensity, type of cancer treatments, time in treatment, and cancer diagnosis were correlated with HRQoL. CONCLUSION: Our study highlights the need to develop interventions based on diagnosis and treatment regimen to improve the HRQoL in children undergoing curative cancer treatment.

Risk factors associated with hospital readmission in pediatric asthma.

Asthma is a leading cause of hospitalization among children, and about 15-50% of pediatric patients are readmitted after an index admission. The purpose of this integrative review is to explore contemporary scientific findings on the association between pediatric asthma readmission and various demographic, environmental, psychosocial and clinical risk factors. An electronic database search resulted in a sample of 29 studies. African American, public or no insurers, previous admission and complex chronic comorbidity were identified as risk factors associated with pediatric asthma readmission. However, more interdisciplinary and well-designed investigations are warranted to further explicate the spectrum of environmental and psychosocial correlates.

Liver transplant using donors after cardiac death: a single-center approach providing outcomes comparable to donation after brain death.

OBJECTIVES: Organ donation after cardiac death remains an available resource to meet the demand for transplant. However, concern persists that outcomes associated with donation after cardiac death liver allografts are not equivalent to those obtained with organ donation after brain death. The aim of this matched case control study was to determine if outcomes of liver transplants with donation after cardiac death donors is equivalent to outcomes with donation after brain death donors by controlling for careful donor and recipient selection, surgical technique, and preservation solution. MATERIALS AND METHODS: A retrospective, matched case control study of adult liver transplant recipients at the University of Tennessee/Methodist University Hospital Transplant Institute, Memphis, Tennessee was performed. Thirty-eight donation after cardiac death recipients were matched 1:2, with 76 donation after brain death recipients by recipient age, recipient laboratory Model for End Stage Liver Disease score, and donor age to form the 2 groups. A comprehensive approach that controlled for careful donor and recipient matching, surgical technique, and preservation solution was used to minimize warm ischemia time, cold ischemia time, and ischemia-reperfusion injury. RESULTS: Patient and graft survival rates were similar in both groups at 1 and 3 years (P = .444 and P = .295). There was no statistically significant difference in primary nonfunction, vascular complications, or biliary complications. In particular, there was no statistically significant difference in ischemic-type diffuse intrahepatic strictures (P = .107). CONCLUSIONS: These findings provide further evidence that excellent patient and graft survival rates expected with liver transplants using organ donation after brain death donors can be achieved with organ donation after cardiac death donors without statistically higher rates of morbidity or mortality when a comprehensive approach that controls for careful donor and recipient matching, surgical technique, and preservation solution is used.

Quality of life after abdominal wall reconstruction following open abdomen.

BACKGROUND: Management of intra-abdominal hypertension with an open abdomen and planned ventral hernia results in decreased mortality. But, delayed abdominal wall reconstruction (DAWR) is necessary. Results after DAWR demonstrate acceptable recurrence, morbidity, and mortality rates. However, little is known about quality of life (QOL) after DAWR. The purpose of this study was to analyze QOL after DAWR. METHODS: Patients who had DAWR>15 years were identified from operative logs of a trauma center. Patients were contacted, and a QOL assessment was administered in person or via telephone. The QOL assessment contained the Short-Form 36-Item Health Survey 1.0, the Posttraumatic Stress Disorder (PTSD) Checklist-Civilian Version, and the Centers for Epidemiologic Studies Depression Scale. RESULTS: The QOL assessment was completed by 41 of 152 patients. The indication for open abdomen was injury in 37 (90%) and emergency operation in 4 (10%). Time to follow-up ranged from 9 months to 14.6 years after DAWR. Of 31 patients working before DAWR, 23% had not returned to work secondary to DAWR. Also, 65% screened positive for depression and 23% screened positive for PTSD. Compared with population norms Physical Component Scores were significantly lower for the study population (41.1±13.2, p<0.05). CONCLUSION: Patients who undergo DAWR have decreased physical functioning and have a high prevalence of PTSD and depression. Consideration should be given to screening for depression and PTSD in this patient population.

Relationships between sex, race, and social class and social support networks in kidney, liver, and pancreas transplant recipients.

CONTEXT: The contribution of social support networks to the recovery of transplant recipients is an important assessment in measuring improved physical and psychosocial well-being. Social support networks are described by structure, type, and function. OBJECTIVES: (1) To describe the levels of structure (size, formal and informal support), type (concrete, emotional, and informational), and function (criticalness, direction, closeness, frequency, and duration) of the social support network and (2) to examine the relationships between individual characteristics of sex, race, and social class and social support networks. METHODS: This exploratory-descriptive study was done in a Mid-south transplant center. A total of 258 kidney, liver, and pancreas transplant recipients participated, 61% of whom were less than 50-years-old. Instruments included a demographic questionnaire, the social support network pie chart, and the social support network grid. Descriptive statistics and analysis of variance were used with a .05 significance level. RESULTS: The social support network comprised extended family (67%), with a mean of 13.68 members. Emotional support was the most prevalent type of support reported. The mean (SD) duration of support was 7.9 (4.9) years. Sex, race, and social class had no main relationships with structure and type of support. However, women had a main effect with closeness (F = 4.98, P < .03) and African Americans had significantly higher levels of frequency of support (F = 7.51, P < .01) and longer duration of support (F = 9.07, P < .01) than did whites. Social and nursing intervention may improve the network closeness in males and may also augment support frequency and duration for whites.

Implementing randomized assignment in a nursing clinical randomized control trial.

During the design phase of any research, an investigator addresses internal and external threats to validity and develops mechanisms to minimize these threats. Controlling for threats to study validity enhances the meaningfulness and generalizability of study outcomes. Representativeness of the study sample is one key design feature undertaken to ensure study validity; however, during clinical trials the investigator must stay attuned to ongoing situations that can alter sample representativeness. In the context of an ongoing nursing-led randomized control trial, threats to sample representativeness are discussed. These threats can occur in any study and may require modification of the study design to maintain validity of research outcomes. This article provides insight regarding threats to study validity encountered by one research team and the modifications undertaken to address them.

Changes in weight during the first year after kidney transplantation.

CONTEXT: Obesity frequently occurs following kidney transplantation and is of concern because of the associated risk for cardiovascular complications. OBJECTIVE: To examine weight gain over the first year after kidney transplantation to determine associations with gender, ethnicity, and cardiovascular risk factors. DESIGN: A retrospective analysis was completed on patients who had received transplants between January 1998 and January 2002 and who had matching baseline and 1-year follow-up data and a functional graft. PARTICIPANTS: The sample consisted of 171 recipients (33% women, 58% African Americans, and 39% whites) with a mean age of 44 +/- 12.2 years. MAIN OUTCOME MEASURES: Outcome measures included fasting blood sugar, triglycerides, creatinine levels, and body mass index categorized as normal, overweight, or obese. RESULTS: The total group showed a significant increase in mean weight (6.2 +/- 10.7 kg) and body mass index (2.1 +/- 3.8). Although equivalent at baseline, by 1 year after transplantation there were significantly more obese than normal-weight recipients, regardless of gender or ethnicity, with African Americans increasing more than whites and women more than men. At baseline, those characterized as obese versus normal weight were older (47 vs. 41 years; P < .05), with a higher fasting blood sugar. At 1 year, differences in age and fasting blood sugar disappeared; however, the obese group had higher triglycerides (235 vs. 165, P = .01). CONCLUSIONS: Weight gain after transplantation was not explained by demographic and clinical factors. We speculate additional variables such as genetic factors influence weight gain and warrant study.

Posttransplant diabetes mellitus in liver transplant recipients.

CONTEXT: Approximately 20% of liver transplant recipients develop posttransplant diabetes mellitus. Hepatitis C, a leading indication for liver transplantation, has been identified as a risk factor for posttransplant diabetes mellitus and is an observation that is not well described. OBJECTIVE: To evaluate the incidence of posttransplant diabetes mellitus and risk factors associated with this condition. DESIGN: A retrospective chart review. SETTING: A large urban transplant center. PATIENTS: One hundred fifteen liver transplant recipients who received a transplant between January 1, 1998, and August 31, 2001. RESULTS: The rate of posttransplant diabetes mellitus, calculated at 3-month intervals in the first year after liver transplantation, ranged from 19.4% to 24.6%, which is similar to the averages reported in most published studies. The cumulative rate of posttransplant diabetes mellitus, which includes all patients who developed this condition during the time studied, was 31.3%. Clinical and demographic factors, including immunosuppression regimens, were similar between patients with and without posttransplant diabetes mellitus. Two risk factors for posttransplant diabetes mellitus were identified: hepatitis C, which was the leading indication for transplantation in this group (54.8%), and cytomegalovirus infection during the first year after transplantation. Other clinical and demographic variables, such as gender, age, ethnicity, rejection episodes, body mass index, and immunosuppression, were not identified as risk factors for posttransplant diabetes mellitus in liver transplant recipients.

Heart rate variability and mortality in patients with end stage renal disease.

Heart rate variability (HRV), a measure of autonomic function, is associated with mortality in non-end stage renal disease (ESRD). The purpose of this pilot study was to determine if HRV was predictive of mortality in patients on dialysis and to identify at-risk factors. Patients on chronic hemodialysis (n = 53) were assessed at baseline and again 24 months later. Baseline measures quantified 24-hour HRV, health, depression, and quality of life (QoL). Twenty-four-month data determined mortality. Participants were African American, 49% male, aged 47.8+/-13.3 years, with 62.4+/-60 months of dialysis. Outcomes of 24-hour HRV measures were impaired for all groups. Factors including exercise and smoking were associated with diminished HRV. The low frequency-high frequency ratio was found to be the most influential HRV determinant of death. The ability to identify patients at-risk for death and to prescribe therapy to reduce risk could have significance for the care of patients with ESRD.

Differences in quality of life before transplantation among transplant recipients with respect to selected socioeconomic variables.

PURPOSE: To examine differences in quality of life before transplantation among transplant recipients with respect to a selected set of socioeconomic variables related to household/housing, family social and health history, and availability and use of community resources. METHODS: An exploratory-descriptive study in a US university's transplant clinic. Sample included 249 kidney, liver, and pancreas transplant recipients aged 18 years or older. Instruments were a socioeconomic data questionnaire, the Sickness Impact Profile, the Adult Self-Image Scale, the Quality of Life Index, and a general quality of life scale. Descriptive statistics and analysis of variance with Bonferroni adjustment were used with a significance level of .05. Effect sizes were estimated. RESULTS: Quality of life did not differ significantly for any variable except for the use of private insurance combined with public health insurance. Such coverage was associated with significantly better scores on the psychosocial and total dimensions of the Sickness Impact Profile, indicating better health before transplantation. CONCLUSION: Researchers must first explore why a mix of private and public health insurance is associated with a higher quality of life and second reexamine whether these results occur at other transplant centers. These results also provide direction for social work professionals as they counsel patients in an attempt to help patients achieve a better psychosocial and physical quality of life before transplantation.

Evaluation of an immunosuppressant side effect instrument.

BACKGROUND: Clinicians continue to be compelled to evaluate the impact of immunosuppressive medication side effects on the quality of life of transplant recipients. We Were asked to develop an instrument to measure side effects in immunosuppressed transplant recipients. OBJECTIVE: To construct an instrument that measures the impact and severity of side effects of immunosuppressive medications used in transplantation and to assess the reliability and validity of the newly developed instrument called the Memphis Survey. DESIGN: The instrument was constructed by a panel of physicians, nurses, and pharmacists with experience in treating transplant recipients. A small group of kidney transplant recipients (n= 13) provided pilot data for refining and testing the instrument. A national sample of kidney, liver, and heart transplant recipients (n = 505) provided data that were used to further develop the instrument. ANALYSIS: Factor analysis was used to determine the psychological dimensions underlying the instrument and to guide the construction of scales from the survey items. The instrument scales were then computed from the dataset of 505 transplant recipients to quantify the impact of immunosuppressant side effects on the quality of life of transplant recipients. RESULTS AND CONCLUSION: Analyses showed the final instrument scales to be valid and reliable. Exploratory analysis suggests the need for further testing of the instrument to determine gender differences.

Cost-effectiveness of post-transplantation quality of life intervention among kidney recipients.

BACKGROUND: The purpose was to demonstrate the cost-effectiveness of an experimental post-transplant care program designed to improve kidney transplant recipients' quality of life (QoL). The intervention program integrated a three-pronged interdisciplinary approach emphasizing: (i) proactive, patient-initiated care to prevent transplant-related morbidities, (ii) employment/vocational counseling, and (iii) enhancement of social support. METHODS: A cost-effectiveness analysis of a clinical trial was performed comparing QoL and costs in two groups: a retrospective cohort (n = 30) and those who received the experimental interventions (n = 150). Data were collected at baseline, 6 and 12 months. The number of quality-adjusted 'treatment-free days' was used as the primary outcome. The costs included those for direct intervention, direct inpatient and outpatient post-transplant health care, and indirect out-of-pocket expenses borne by patients. RESULTS: Patients in the intervention group had more quality-adjusted treatment-free days (289 vs. 272 and statistically significant) and lower cost per patient (although not statistically significant). Further, the superior outcome was delivered at an incremental cost of 29 US dollars per quality-adjusted treatment-free day. A one-way sensitivity analysis confirmed the robustness of the results. CONCLUSION: The experimental post-transplant care program is both effective and cost-effective; the superior results are attributed to improved QoL.

A comparative study of quality of life among the age groups of kidney transplant recipients.

CONTEXT: Quality of life and transplant age are 2 major concerns of professionals and researchers. Both variables are contemplated in transplant allocation decisions as a result of longer graft and patient survival and the likelihood of achieving a reasonably good quality of life for patients of all ages. Studies are warranted to understand if quality of life might serve as a moderating variable to balance question of age and transplant allocations. OBJECTIVE: To determine if there are differences in the pretransplant and posttransplant quality of life of kidney transplant recipients with respect to age. DESIGN, PARTICIPANTS, SETTING, AND OUTCOME MEASURES: This study comparatively examined the differences in pretransplant and posttransplant quality of life of kidney transplant recipients in 5 age groups (18-29 years, 30-39, 40-49, 50-59, and older than 60). A sample of 293 patients admitted to a midsouthern US transplant center and selected on a convenience-sampling basis were included in the study. Multiple measures of quality of life were used, including the Quality of Life Index, the Adult Self-Image Scale, and the Sickness Impact Profile. RESULTS: Both the pretransplant and posttransplant quality of life of all age groups of kidney transplant recipients were similar, with the exception that the recipients in the age range of 30 to 49 years reported better posttransplant quality of life on the Sickness Impact Profile Psychosocial measure (F=2.18, P=.02). CONCLUSIONS: Quality of life outcomes do not appear to favor one age group over another, although psychosocial outcomes may warrant some additional consideration.

Impact of long-term immunosuppressive therapy on psychosocial and physical well being in liver transplant recipients.

To achieve the fullest potential of transplantation, continuing concern for the recipients' quality of life must be a part of the process. Database records of patients who are currently alive and received transplants between 1982 and 1991 were retrospectively analyzed. Recipients were contacted and asked to answer a quality-of-life questionnaire. Of 105 liver transplant recipients, 51 died within 10 years after transplantation; 47 were contacted. Posttransplant complications included hypertension (64%), posttransplant diabetes mellitus (17%), osteopenia (40%), osteoporosis (26%), and heart disease (17%). Most recipients reported all aspects of their life to be average, if not better than their age-matched peers. Although most recipients complained about side effects of immunosuppressive agents, they were all happy to be alive and agreed that their quality of life showed an impressive favorable change to a level exceeding that of the general population. These results suggest that liver transplantation not only improved survival but also quality of life.