Dimensions of quality of life and self-monitoring therapy with oral anticoagulants--still research or everyday practice?

In correlation with increased life expectancy of patients, quality of life (QOL) has become a factor of increasing interest by the patient himself and also of importance in health-care planning and recruitment of financial resources. In this context, self-monitoring of long-term anticoagulant treatment might be a strategy that could mean a step forward in health-related as well as general life satisfaction for patients participating in self-monitoring programs. Also, the new strategy of increased home-control of anticoagulant treatment illustrates the complexity of multiple factors that can lead to changes in the subjective feeling and objective aspects of QOL. Our intention in a pilot study was to probe the feasibility of QOL research and relevant factors of influence by retrospectively evaluating data from two groups of outpatients seen in a large treatment center. The high frequency (n = 8 in sample 2) of disturbed sleep as a simple screening indicator stresses the probable importance of undetected depression, which might require treatment and could confound research as to QOL. Instruments to measure QOL in oral anticoagulation self-monitoring should therefore be adapted to the heterogeneous structure of factors in the target population, and include psychological parameters, especially in regard to health-related locus of control and mood.     

Quality of life in older patients with atrial fibrillation

This review summarizes what is known about quality of life (QOL) in older patients with atrial fibrillation (AF). The studies reviewed in this paper represent an increasingly broad repertoire of therapies for the treatment of AF and suggest that QOL in older patients does improve with treatment. The most dramatic improvements in QOL are noted in patients who are highly symptomatic and have poorer QOL at baseline. The data from studies where ablation and pacing therapy is used for treatment in patients with refractory AF vividly demonstrate this statement. There is also evidence of improvement in QOL in those with less severe symptoms, though it is extremely challenging to measure improvements in older patients who are asymptomatic (e.g., silent AF) or mildly symptomatic. Recommendations about new knowledge needed to optimize outcomes, particularly QOL, in patients with AF are based on these findings and the gaps in existing knowledge.     

Hepatic veno-occlusive disease: pathogenesis, diagnosis and treatment

Hepatic veno-occlusive disease (VOD) is one of the most serious complications following hematopoietic stem cell transplantation (SCT) and is associated with a very high mortality in its severe form. This review outlines the pathogenesis and clinical features of VOD, with an emphasis on endothelial cell injury and risk factors. The current status and future directions of research for both prophylaxis and treatment are also discussed.     

Effect of operative approach on quality of life following anatomic lung cancer resection

Patient-reported outcomes (PRO) after lung cancer surgery are of increasing interest to patients and clinicians. A variety of studies have investigated the impact of the surgical approach on quality of life (QOL) after surgery for early non-small-cell lung cancer (NSCLC). Our aim is to review the current evidence on how minimally-invasive approaches, including video-assisted thoracoscopic surgery (VATS) and robotic-assisted thoracoscopic surgery (RATS), versus open thoracotomy for lung cancer affect QOL. We conducted a systematic review of the literature of studies comparing QOL after VATS/RATS versus thoracotomy approach using studies published before 2019 on PubMed and Google Scholar. Studies were assessed for differences in QOL by domains. Fifteen studies met our inclusion criteria including 14 observational studies and one randomized trial. Survey instruments and timing of QOL assessments differed between all studies. A thoracoscopic (VATS or RATS) approach was associated with better general health (3/10 studies), physical functioning (9/14 studies), social functioning (1/12 studies), mental health (3/13 studies), emotional role functioning (4/12 studies), physical role functioning (7/12 studies), and bodily pain (7/12 studies) as compared to open surgery. The open thoracotomy approach was associated with better general health and mental health in one study each. Although QOL assessment in current studies is highly variable, the existing evidence suggests that a thoracoscopic approach is associated with improved QOL, particularly in the areas of physical functioning and pain as compared to open lung cancer surgery.     

Demonstration of reversed flow in segmental branches of the portal vein with hand-held color Doppler ultrasonography after hematopoietic stem cell transplantation

Hepatic veno-occlusive disease (VOD) is a severe complication of hematopoietic stem cell transplantation (SCT). When monitored with hand-held color Doppler ultrasonography during day -7 to +35 around SCT, reversed blood flow in the segmental branches of the portal vein was detected in nine of 56 patients who had undergone SCT. Three of nine patients had clinical evidence of VOD, but six patients did not fulfill the criteria for diagnosis of VOD initially. Two patients progressed to clinical VOD at a later date and the reversed portal flow disappeared with or without treatment for VOD in the other four patients. Monitoring for reversed portal flow with color Doppler ultrasonography may be a useful tool for the early diagnosis of VOD, and may improve prognosis by allowing early initiation of treatment.     

Optimal aerobic exercise intensity and its influence on the effectiveness of exercise therapy in patients with pulmonary arterial hypertension: a systematic review

BackgroundExercise intensity in exercise training programs is an important determinant of program efficacy, such as improvement in exercise capacity and quality of life (QOL). It is not well known whether differently applied exercise intensities are efficacious when used in exercise-based cardiac rehabilitation programs for patients with pulmonary arterial hypertension (PAH).MethodsThree databases (PubMed, EMBASE, and CINAHL) were searched with the following inclusion criteria: comparative study of exercise interventions for patients with pulmonary arterial hypertension. Three clinical specialists (a physician, nurse, and exercise physiologist) selected the included articles using the process of systematic review. Included articles were grouped according to aerobic exercise intensity: low, moderate-to-vigorous, and vigorous. The level of evidence for each study was rated using Sackett’s levels of evidence.ResultsOf 1,452 studies reviewed, 8 were included according to the inclusion criteria (3 randomized controlled trials (RCTs), 3 prospective studies, and 2 case series). Exercise capacity for a six-minute walk distance (mean: 57.7 m) and QOL improved in the above moderate intensity group, while the low intensity group did not show improvement after intervention. For termination criteria, data obtained from the reviewed articles were not sufficient to suggest any exercise intensity recommendations for patients with pulmonary arterial hypertension.DiscussionThe findings in this study suggest that at least moderate aerobic exercise intensity is needed to significantly improve six-minute walk distance and QOL in individuals diagnosed with World Health Organization Group 1 of pulmonary arterial hypertension. There is a need for prospective RCTs comparing different exercise intensities in this patient population.     

Acute lung injury after allogeneic stem cell transplantation: is the lung a target of acute graft-versus-host disease?

Allogeneic hematopoietic stem cell transplantation (SCT) is an important therapeutic option for a number of malignant and nonmalignant conditions but the broader application of this treatment strategy is limited by several side effects. In particular, diffuse lung injury is a major complication of SCT that responds poorly to standard therapeutic approaches and significantly contributes to transplant-related morbidity and mortality. Historically, approximately 50% of all pneumonias seen after SCT have been secondary to infection, but the judicious use of broad-spectrum antimicrobial prophylaxis in recent years has tipped the balance of pulmonary complications from infectious to noninfectious causes. This mini review will discuss the definition, risk factors and pathogeneses of noninfectious lung injury that occurs early after allogeneic SCT.     

Social support and health of older people in Middle Eastern countries: A systematic review

The aim of this study is to systematically review quantitative studies exploring the association between social support (SS) and the health of older people in Middle Eastern countries. Sixteen electronic databases and other resources were searched to identify studies that met the inclusion criteria of the review. Abstracts of identified papers were screened for relevancy, following which the authors determined eligibility, applied quality criteria and extracted the data. Twenty‐two studies met the inclusion criteria. Even allowing for the diversity of the studies included, this review offered strong and consistent evidence for a positive relation between SS and mental health, while there was inconsistent evidence of an association between SS and other health outcomes. The limited evidence for the Middle Eastern region confirms findings from other settings on the importance of SS for mental health in later life. Current evidence is inadequate to assess whether SS is associated with physical health.     

Patients receiving HLA-haploidentical/partially matched related allo-HSCT can achieve desirable health-related QoL that is comparable to that of patients receiving HLA-identical sibling allo-HSCT

To investigate the health-related quality of life (HRQoL) of patients receiving allogeneic hematopoietic SCT (allo-HSCT) from HLA-haploidentical/partially matched related donors (HID/PMRD) and to compare this value with that of patients receiving allo-HSCT from HLA-identical sibling donor (ISD), a total of 350 patients receiving allo-HSCT were enrolled in a study (ISD: 173; HID/PMRD: 177). HRQoL post transplantation was evaluated by an SF-36 questionnaire. The effect of various factors on the HRQoL was analyzed through COX regression. Compared with the ISD group, patients in the HID/PMRD group had higher scores in physical functioning, general health, bodily pain, vitality and emotional role functioning, and these patients functioned significantly better on the physical and mental component summaries. Also, long-term survivors exhibit better HRQoL. Measured by multivariate analysis, extensive chronic GVHD was observed to have a strongly negative impact on patients' HRQoL, while male gender status, lower age when receiving allo-HSCT and returning to work or school were associated with positive impacts on at least one subscale. These results showed that the HRQoL of patients receiving HID/PMRD hematopoietic SCT (HSCT) is comparable to that of patients receiving ISD HSCT, and HLA disparity is not the factor affecting the HRQoL.     

Quality of life in children and adults with constipation

This review summarises the literature on quality of life (QOL) assessments in both children and adults with functional constipation. Studies of adults with constipation include subjects from both tertiary care centres and population-based surveys whereas there are no population-based studies in children. The preponderance of evidence indicates that the adverse effects of chronic constipation on QOL in both children and adults are comparable to that seen in other chronic gastrointestinal and non-gastrointestinal disorders. There are no data on the effect of treatment of children with constipation with regard to QOL whereas several studies indicate that successful treatment of constipation in adults has a favourable effect on QOL. The emerging concept in the treatment of chronic constipation is to measure both objective measures such as frequency and ease of defecation and subjective parameters such as QOL.     

A model of quality of life in the patients with Crohn's disease]

PURPOSE: To identify the integrated impact of psychological, social, and clinical factors onto the quality of life (QOL) in the patients with Crohn's disease. SUBJECTS AND METHODS: Two hundred twenty two out-patients participated in a cross-sectional questionnaire survey in which health-related QOL (SF36), disease-specific symptoms, psychological adaptation and social support were measured. Multi-variable regression models were used to test the impact of clinical, psychological, and social factors on the patient's QOL and symptom reports. RESULTS: The patient's symptoms and health-related QOL were significantly associated not only with disease activities, but also with the patient's psychological adaptation and the quality of social support. CONCLUSION: The results strongly suggest that a psychoeducational intervention may be useful in combination with a clinical intervention to improve the patient's QOL.     

Prevention of infectious complications in pediatric HSCT

Infectious complications constitute a major cause of morbidity and mortality in pediatric and adult patients undergoing hematopoietic SCT (HSCT). Current guidelines and recommendations for prevention of infections in children after HSCT are presented in this mini review. The paper is based on evidence-based recommendations rated by the strength of the recommendation and the quality of the supporting evidence. Prophylaxis strategy based on risk stratification includes: (1) general infection control in hospital environment, (2) pharmacological approach related to antibacterial, antifungal and antiviral agents and (3) vaccination. Although most studies were carried out on adults only, some included both pediatric and adult patients. No differences in prophylaxis strategy and efficacy among age groups are reported. With changing practices, transplant teams are encouraged to review local patterns of prophylaxis strategy.     

Social cognitive theory and physical activity: a systematic review and meta‐analysis

This review investigated three research questions (i) What is the utility of social cognitive theory (SCT) to explain physical activity (PA)?; (ii) Is the effectiveness of SCT moderated by sample or methodological characteristics? and (iii) What is the frequency of significant associations between the core SCT constructs and PA? Ten electronic databases were searched with no date or sample restrictions. Forty‐four studies were retrieved containing 55 SCT models of PA. Methodological quality was assessed using a standardized tool. A random‐effects meta‐analysis revealed that SCT accounted for 31% of the variance in PA. However, methodological quality was mostly poor for these models. Methodological quality and sample age moderated the PA effect size, with increases in both associated with greater variance explained. Although self‐efficacy and goals were consistently associated with PA, outcome expectations and socio‐structural factors were not. This review determined that SCT is a useful framework to explain PA behaviour. Higher quality models explained more PA variance, but overall methodological quality was poor. As such, high‐quality studies examining the utility of SCT to explain PA are warranted.     

Measurement of health-related quality of life in the national emphysema treatment trial

PURPOSES: To evaluate two generic and two disease-specific measures of health-related quality of life (QOL) using prerandomization data from the National Emphysema Treatment Trial (NETT). METHOD: The analyses used data collected from the 1,218 subjects who were randomized in the NETT. Patients completed evaluations before and after completion of the prerandomization phase of the NETT pulmonary rehabilitation program. Using data obtained prior to participation in the rehabilitation program, QOL measures were evaluated against physiologic and functional criteria using correlational analysis. The physiologic criteria included estimates of emphysema severity based on FEV(1) and measures of Pao(2) obtained with the subject at rest and breathing room air. Functional measures included the 6-min walk distance (6MWD), maximum work, and hospitalizations in the prior 3 months. RESULTS: Correlation coefficients between QOL measures ranged from -0.31 to 0.70. In comparison to normative samples, scores on general QOL measures were low, suggesting that the NETT participants were quite ill. All QOL measures were modestly but significantly correlated with FEV(1), maximum work, and 6MWD. Patients who had stayed overnight in a hospital in the prior 3 months reported lower QOL on average than those who had not been hospitalized. There were significant improvements for all QOL measures following the rehabilitation program, and improvements in QOL were correlated with improvements in 6MWD.Comment: The disease-specific and general QOL measures used in the NETT were correlated. Analyses suggested that these measures improved significantly following the rehabilitation phase of the NETT.     

Health-related quality of life assessed by EuroQol in caregivers of home care stroke patients

The purpose of this study was to identify significant factors influencing health-related quality of life (HRQOL) of caregivers for home care patients with stroke. Subjects were 150 caregivers and 167 stroke patients who required help in activities of daily living (ADL) after discharge. HRQOL of caregivers and patients was assessed using a EuroQol utility score obtained by mailed questionnaire. The questionnaire also included the following items; caregiver's relationship to the patient, age, nursing care hours, family support, patient's functional changes after discharge, stroke recurrence, ADL, public nursing care insurance, care levels, and number of services patients received. The mean QOL score of 0.82 +/- 0.18 for caregivers was significantly higher than that of 0.57 +/- 0.20 for patients. Multiple regression analysis revealed that the significant factors influencing caregiver's QOL were caregiver's age and family support for caregivers, and anxious/depressed state, pain/discomfort state, and failure of memory of the patients. In addition, a significant correlation of QOL score was observed between patients and caregivers in the pain/discomfort and anxious/depressed states. The results of our study suggested that the alleviation of the patient's depressive state after stroke and the family's active support to caregivers played an important role for improving caregiver's QOL.     

Patients' psychosocial concerns following stem cell transplantation

Information regarding the nature, frequency, correlates and temporal trajectory of concerns of stem cell transplantation (SCT) recipients is critical to the development of interventions to enhance quality of life (QOL) in these individuals. This study examined psychosocial concerns in 110 SCT (87% autologous) recipients drawn from two SCT centers. Participants were a mean of 46 years of age and 17 months post-SCT (range 3-62 months). Information regarding current and past SCT-related concerns, performance status, and demographic characteristics was collected by telephone interview or questionnaire. Recipients reported a wide variety of psychosocial concerns following SCT. Recipients who were younger, female and evidenced a poorer performance status reported a larger number of post-SCT concerns. Examination of the temporal trajectory of concerns suggests that some concerns are salient throughout the course of post-SCT recovery (eg disease recurrence, energy level, 'returning to normal'), some are salient early in the course of recovery (eg quality of medical care, overprotectiveness by others), and others emerge later in the course of recovery (eg feeling tense or anxious, sexual life, sleep, relationship with spouse/partner, ability to be affectionate). Implications for the development of interventions to enhance post-SCT QOL are identified.     

Differences in mothers' and fathers' health-related quality of life after pediatric SCT: a longitudinal study

The purpose of this study was to examine longitudinally health-related quality of life (HRQOL) and related factors in mothers and fathers of children who undergo SCT, before, and 1 and 2 years after SCT. A total of 84 parents (49 mothers/35 fathers) of patients diagnosed mainly with leukemia completed a HRQOL measure before SCT, 46 at 1 year (26 mothers/20 fathers) and 50 parents (31 mothers/19 fathers) at 2 years post SCT. Physical and psychosocial HRQOL summary scores are reported. Parents' age and gender, child's diagnosis, radiation history, age, behavior and physical health were examined. Linear mixed models for repeated measures with a covariate structure were used for analysis. Physical HRQOL did not differ between mothers and fathers or over time. Maternal and paternal psychosocial HRQOL scores improved by 2 years post SCT. Child's behavior problems and poor health, and maternal age (younger) predicted poor maternal psychosocial HRQOL 2 years post SCT. Child's behavior problems, diagnosis and treatment severity predicted poor paternal psychosocial HRQOL. These findings identify similar (child's poor behavior) and differential risk factors (parental young age, disease and treatment severity, and child's poor health status) for poor HRQOL for mothers and fathers. These findings can guide comprehensive family-care interventions before, during and after pediatric SCT.     

The impact of hematopoietic stem cell transplantation on sexuality: a systematic review of the literature

In this paper we review evidence concerning the impact of hematopoietic SCT (HSCT) on sexuality. The aims are to determine: (1) the sexual changes experienced by patients following allogeneic or autologous HSCT, and its consequences; (2) changes in the sexual function over time and (3) the impact of physiological changes induced by intensive treatment with radiation and chemotherapy on sexual functioning. Four databases were searched for articles published between January 1995 and May 2011. A total of 14 studies were identified and analyzed. We found that (1) multiple aspects of sexuality were affected, and the impact and etiology of these sexual alterations were different between genders, and (2) recovery of sexual activity and pleasure occurred in the first 2 years after HSCT, although it appears that some survivors are more likely to experience sexual dysfunction even 5-10 years after HSCT as compared with controls; and (3) there was contradictory evidence concerning possible differences between allogeneic and autologous HSCT, although there was a significant relation between the sexual dysfunctions and the type of chemotherapy administrated as conditioning and chronic GVHD. Future prospective research in sexual dysfunction with specific reliable validated instruments and more adequate sample sizes will be required to definitively evaluate the impact of HSCT on sexuality.     

Quality of life in children with systemic lupus erythematosus: a review

Systemic lupus erythematosus (SLE) in children is a chronic multisystem disease with wide ranging effects on their quality of life (QOL). While SLE's impact on different arenas of life and well-being has been extensively examined in the adult population, its effect on children has not received adequate attention. This review discusses the multidimensional aspect of QOL, the biopsychosocial implications of SLE, factors complicating QOL measurement in the affected population, and the different generic and disease-specific scales used for measuring QOL and related constructs. Until now, there have not been any pediatric SLE-specific health-related QOL (HRQOL) scales. A section is devoted to a novel instrument developed specifically for measuring QOL in pediatric lupus called the Simple Measure of the Impact of Lupus Erythematosus in Youngsters (SMILEY). SMILEY is a brief, easily understood, valid, reliable and internally consistent pediatric SLE-specific QOL scale and will be a useful adjunct to clinical trials and outcomes research.     

Social outcomes and quality of life of childhood cancer survivors in Japan: a cross-sectional study on marriage, education, employment and health-related QOL (SF-36)

Social outcomes and quality of life (QOL) of childhood cancer survivors (CCSs) remain unknown in Japan. We investigated these outcomes in young adult CCSs compared to those of their siblings in Japan, and analyzed the association between social outcome and SF-36 health survey subscale scores. Between 2007 and 2009, we performed a cross-sectional survey using self-rating questionnaires. We estimated social outcomes and health-related QOL by performing the SF-36 in each group: CCSs with or without stem cell transplantation (SCT)/radiotherapy (RT) and their siblings. Adjusted odds ratios for outcomes of interest were estimated using logistic regression analysis. Questionnaires from 185 CCSs and 72 CCS's siblings were analyzed. There were no differences in educational attainment or annual income. The SF-36 subscale scores of CCSs with SCT and RT were significantly lower than those of siblings in physical functioning (PF) (p < 0.001 and 0.003, respectively) and general health (GH) (both p = 0.001). Lower PF scores correlated with recurrence (p = 0.041) and late effects (p = 0.010), and poor GH scores with late effects (p = 0.006). The CCSs had made efforts to attain educational/vocational goals; however, a significant proportion of CCSs who had experienced late effects remain at increased risk of experiencing diminished QOL.