Quality of life for parents of children with influenza-like illness: development and validation of Care-ILI-QoL

Purpose

Influenza-like illnesses (ILI) cause paediatric morbidity and affect the quality of life (QoL) of children and their parents. We have developed a disease-specific questionnaire (Care-ILI-QoL) to measure the QoL of caregivers of children with ILI.

Methods

The drafting of the Care-ILI-QoL questionnaire was based on a systematic review, a quantitative survey, qualitative interviews with parents, and meetings with paediatricians. Children aged 6–48 months recruited from childcare centres in Sydney, Australia, were followed up during the 2011 influenza season. Care-ILI-QoL and SF-12v2 Acute Form were administered to the parent of a sick child 2 weeks after the onset of ILI, and again 2 weeks after the child had recovered. Exploratory factor analysis was conducted. Internal consistency, concurrent validity, discriminant validity, homogeneity of items, and responsiveness were tested.

Results

Out of the 125 children enrolled from 48 childcare centres, 55 children had ILI (total 75 ILI episodes). Care-ILI-QoL was reduced from 25 to 16 items covering four factors: Daily Activities, Perceived Support, Social Life, and Emotions (Cronbach’s alphas 0.90, 0.92, 0.78, and 0.72, respectively). Care-ILI-QoL has satisfactory concurrent and discriminant validity, good internal consistency, and excellent responsiveness. Total QoL and factor scores correlated well with SF-12v2 scores. Total QoL scores were significantly lower in parents who perceived their child as very/extremely sick, sacrificed 10 hours or more in work or recreation in caring for the child, or whose child had two or more general practitioner visits. Total QoL and factor scores were significantly higher after the child had recovered than when the child had ILI.

Conclusions

Care-ILI-QoL is the first ILI-specific QoL instrument for parents and is demonstrated to be valid and reliable in a developed country setting where the child is affected by ILI. It has the potential to be applied in clinical and research settings to assist measurement of disease burden, as a needs assessment tool for resources or to inform policy changes.     

Pre-diagnosis quality of life (QoL) in patients with hematuria: comparison of bladder cancer with other causes

Purpose

To examine quality of life (QoL), health status, sexual function, and anxiety in patients with primary hematuria who later appear to have bladder cancer (BC) and patients with other diagnoses.

Methods

From July 2007 to July 2010, 598 patients with primary hematuria were enrolled in this prospective, multicenter study. Questionnaires (WHOQOL-BREF, SF-12, IIEF, STAI-10-item Trait) were completed before cystoscopy. Diagnosis was subsequently derived from medical files. BC patients were compared with patients with other causes of hematuria.

Results

Cancer was diagnosed in 131 patients (21.9 %), including 102 patients (17.1 %) with BC. No differences were found in the WHOQOL-BREF versus SF-12 psychological or physical health domains. The erectile function was significantly worse in the BC group (9.3 vs. 14.6 for OC, p = 0.02). Patients with muscle-invasive BC (MIBC) had the lowest percentage anxious personalities of all BC patients (p = 0.04).

Conclusions

Cancer was found in 21.9 % of the patients with hematuria. Pre-diagnosis patients with BC have comparable QoL and HS to patients with OC. Erectile dysfunction was highest in patients with BC. MIBC patients had the lowest percentage anxious personalities of the patients with BC.     

Work stress and quality of life in persons with disabilities from four European countries: the case of spinal cord injury

Background

Evidence on the adverse effects of work stress on quality of life (QoL) is largely derived from general populations, while respective information is lacking for people with disabilities. We investigated associations between work stress and QoL and the potentially moderating role of socioeconomic circumstances in employed persons with spinal cord injury (SCI).

Methods

Cross-sectional data from 386 employed men and women with SCI (≥18 work h/week) from the Netherlands, Switzerland, Denmark, and Norway were analyzed. Work stress was assessed with the ‘effort–reward imbalance’ (ERI) model and the control component of the ‘demand/control’ model. QoL was operationalized with five WHOQoL BREF items. Socioeconomic circumstances were measured by years of formal education and perception of financial hardship. We applied ordinal and linear regressions to predict QoL and introduced interaction terms to assess a potential moderation of socioeconomic circumstances.

Results

Multivariate analyses showed consistent associations between increased ERI and decreased overall QoL (coefficient ?1.55, p < 0.001), domain-specific life satisfaction (health ?1.32, p < 0.001; activities of daily living ?1.28, p < 0.001; relationships ?0.84, p = 0.004; living conditions ?1.05, p < 0.001), and the QoL sum score (?2.40, p < 0.001). Low job control was linked to decreased general QoL (0.13, p = 0.015), satisfaction with relationships (0.15, p = 0.004), and QoL sum score (0.15, p = 0.029). None of the tested interaction terms were significant.

Conclusion

ERI was consistently related to all indicators of QoL, while associations with job control were less consistent. Our results do not support the notion that unfavorable socioeconomic circumstances moderate the association between work stress and QoL among persons with SCI.     

Quality of life and self-esteem of persons with paraplegia living in São Paulo, Brazil

Purpose

To evaluate the quality of life (QoL) and self-esteem of paraplegic persons.

Methods

The sample consisted of 60 outpatients with traumatic paraplegia living in São Paulo, Brazil, from whom clinical and demographic data were obtained. QoL was assessed by the 36-item Short-Form (SF-36) health survey questionnaire, and self-esteem was measured by Rosenberg’s Self-Esteem (RSE) scale. Statistical analysis was performed using Student’s t-test, analysis of variance and Fisher’s least significant difference (LSD) test at a significance level of 5%.

Results

Participants were predominately men (86.7%) with a mean age of 32.9 (standard deviation [SD] = 9.47) years, low education level and low income. The SF-36 dimensions that received the lowest scores were physical functioning, role physical and role emotional. Cronbach’s alpha for the SF-36 questionnaire was 0.80. A significant statistical difference was found between the presence of pressure ulcers and low scores on mental health (P = 0.001), as determined by Student’s t-test. The mean self-esteem score was 8.35 and there was a significant statistical difference between low self-esteem scores and occupation (P = 0.008).

Conclusion

Participants reported low QoL and self-esteem. The results provide background information that may be useful in the development of strategies to reduce the impact of spinal cord injury (SCI) on the life and health of persons with SCI, improving their QoL.     

Association of patient demographics on quality of life in a sample of adult patients with cardiac arrhythmias

Purpose

Identify predictors of quality of life (QOL) in patients with any form of cardiac arrhythmia (CA).

Methods

Data from the Medical Panel Expenditure Survey were analyzed from 2004 to 2009. Patients aged ≥18 with any form of CA (identified via ICD-9-CM codes) were included. Primary outcomes included the physical and mental component scores (PCS and MCS) of the Short-Form 12 version 2 (SF-12) and EuroQoL-5D (EQ-5D) utility scores (US version). Patient demographics included insurance status, urban status, geographical region, federal poverty level, education, comorbidities, and disease-related risk factors of CA.

Results

Approximately 5,750,440 individuals had CA. Non-Hispanic Whites had the highest SF-12 MCS (mean 50.9; p < 0.001 across racial groups) and utility scores (mean 0.76; p < 0.001 across racial groups). Patients with both private and public insurance had significantly higher PCS (p = 0.001) and MCS (p < 0.001) in comparison with patients only covered by public insurance. Patients on antiarrhythmic agents had higher SF-12 MCS (51.4 vs. 48.4; p < 0.001) compared to individuals not on antiarrhythmic agents.

Conclusions

Significantly lower QOL existed in specific subpopulations (e.g., patients with only public health insurance, racial/ethnic minorities, and those not exposed to antiarrhythmic agents) within the CA population.     

Determinants of quality of life in children with chronic somatic disease: pilot data from the GapS Questionnaire

Purpose

Quality of life (QoL) is a ubiquitous yet poorly defined concept; the precise determinants of QoL are rarely identified. We used pilot data from the GapS Questionnaire to investigate the most important determinants of QoL in children with chronic somatic illness.

Methods

We enrolled 92 participants including 60 parents and 32 of their children. The sample comprised rheumatology, diabetes, epilepsy, gastroenterology, cystic fibrosis, and day unit patients. Trained interviewers administered the GapS Questionnaire to parents, and to children if ≥10 years. We determined the relative importance of different items for QoL.

Results

Child participants had a mean age of 14.7 years. Children identified “having good friendships”, “being happy most days”, and “getting along with parents” as most important. Parents ranked most highly “being allowed to do all the things you like doing”, “getting told you have done a good job at something”, and “being physically able to do everything you enjoy doing”.

Conclusions

Physical health items were not as important as social and psychological determinants of QoL in our pilot sample.     

Nativity and cognitive disability among children: a unique comparison with reduced selection bias

Objectives

We examined the impact of nativity on self-reported cognitive disability by comparing children who were born outside of the USA (first-generation immigrants) with US-born offspring (second-generation immigrants) of foreign-born parents.

Methods

We analyzed a diverse, nationally representative, sample of 77,324 first-generation immigrant and second-generation immigrant children (aged 5–17 years) from the 2009 American Community Survey. Multivariate logistic regression was used to assess the association between nativity and self-reported cognitive disability after adjustment for demographics and household characteristics.

Results

Self-reported cognitive disability was observed in 1.7 % of the sample. The prevalence was higher among first second-generation immigrants than among second first-generation immigrants (1.9 vs 1.1 %, p < 0.001). After multivariate adjustment, the advantage of being foreign-born remained (OR = 0.63, 95 % CI = 0.53–0.75). Further analysis revealed effect modification of the immigrant health advantage by household income (p = 0.003).

Conclusions

We observed an immigrant advantage in self-reported cognitive disability; however, it was only evident among economically disadvantaged children. Future research should examine the contribution of the accumulation of poverty over time to the relationship between nativity and children’s health.     

Impaired parent-reported health-related quality of life of underweight and obese children at elementary school entry

Purpose

Examine the health-related quality of life of 5–6-year-old underweight, overweight and obese children.

Methods

Our cross-sectional study included 3,227 parent–child dyads from the “Be active, eat right” study. Parents completed questionnaires regarding child and parental characteristics. Health-related quality of life of the child was measured using the Child Health Questionnaire Parent Form 28. Children were classified normal weight, overweight, obese, severely obese, and underweight according to the international age and gender BMI cutoff points. Bootstrap analyses were performed for general linear models corrected for potential confounding variables.

Results

Severely obese children (β, ?2.60; 95 % CI, ?4.80 to ?0.57, p < 0.01) and underweight children (β, ?1.11; 95 % CI, ?1.85 to ?0.39, p < 0.01) had lower parent-reported scores on the physical summary scale. On the physical functioning profile scale parents of overweight and severely obese children also reported statistically significant lower scores (p < 0.05 and p < 0.01, respectively).There were no significant differences regarding the psychosocial summary scale scores between the different weight categories.

Conclusion

Underweight and overweight children experience impaired health-related quality of life on the physical functioning domain. Physicians, teachers and parents should be aware of the possible negative impact on health-related quality of life in underweight and overweight 5–6-year-old children.     

Validation of the Food Allergy Quality of Life—Parental Burden Questionnaire in the UK

Purpose

Food allergy can have a profound effect on quality of life (QoL) of the family. The Food Allergy Quality of Life—Parental Burden Questionnaire (FAQL-PB) was developed on a US sample to assess the QoL of parents with food allergic children. The aim of this study was to examine the reliability and validity of the FAQL-PB in a UK sample and to assess the effect of asking about parental burden in the last week compared with parental burden in general, with no time limit for recall given.

Methods

A total of 1,200 parents who had at least one child with food allergy were sent the FAQL-PB and the Child Health Questionnaire (CHQ-PF50); of whom only 63 % responded.

Results

Factor analysis of the FAQL-PB revealed two factors: limitations on life and emotional distress. The total scale and the two sub-scales had high internal reliability (all α > 0.85). There were small to moderate but significant correlations between total FAQL-PB scores and health and parental impact measures on the CHQ-PF50 (p < 0.01). Significantly greater parental burden was reported for the no-time limited compared with the time-limited version (p < 0.01).

Conclusions

The FAQL-PB is a reliable and valid measure for use in the UK. The scale could be used in clinic to assess the physical and emotional quality of life in addition to the impact on total quality of life.     

Health behaviors contribute to quality of life in patients with advanced heart failure independent of psychological and medical patient characteristics

Background

Little is known about the contribution of health behaviors to quality of life (QoL) in heart transplant candidates. We examined physical activity, dietary habits, psychological, and medical patient characteristics as correlates of QoL among patients enrolled in the multisite Waiting for a New Heart Study.

Method

QoL (Minnesota Living with Heart Failure Questionnaire), demographic variables, psychological variables (e.g., depression, coping styles), and health behaviors (physical activity, dietary habits) were assessed in 318 patients (82 % male, 53 ± 11 years) at the time of wait-listing and analyzed in 312 patients (excluding six underweight patients). Eurotransplant provided BMI and medical variables to compute the Heart Failure Survival Score (HFSS). Hierarchical multiple regression models were used to assess the independent contribution of health behaviors to QoL.

Results

The HFSS was unrelated to QoL. As expected, psychological characteristics (depression, anxiety, vigilant coping style) contributed to impaired QoL, accounting for 22.9, 35.9, and 12.9 % of the variance in total, emotional, and physical QoL, respectively. Physical inactivity further impaired QoL (total: 4.1 %, p < 0.001; physical: 7.4 %, p < 0.001). Dietary habits typically considered as unhealthy (i.e., infrequent consumption of fruits/vegetables/legumes; frequent intake of foods high in saturated fats) were related to enhanced physical QoL, but only among the overweight and obese patients.

Conclusion

Lifestyle interventions to modify negative emotions and to increase physical activity could help to improve QoL in heart transplant candidates, regardless of their disease severity. The role of eating habits in QoL among obese and overweight patients needs further exploration.     

Assessment of health-related quality of life 6 years after childhood cochlear implantation

Purpose

To examine the impact of cochlear implant (CI) intervention on health-related quality of life (HRQOL) assessed by both self- and parent-reported measures.

Methods

In this national study of children implanted between ages 6 months and 5 years, HRQOL of 129 children 6-year post-CI was compared to 62 internal study (NH1) and 185 external (NH2) samples of hearing children frequency-matched to the CI group on sociodemographic variables. HRQOL ratings of children and their parents in each group, measured using the Child Health and Illness Profile-Child Edition, were compared, and their associations with the Family Stress Scale were investigated.

Results

CI children reported overall and domain-specific HRQOL that was comparable to both NH1 and NH2 peers. CI parents reported worse child scores than NH1 parents in Achievement, Resilience, and Global score (p’s < 0.01) but similar or better scores than socioeconomically comparable NH2 parents. Higher family stress was negatively associated with all parent-reported HRQOL outcomes (p’s < 0.01). Parent–child correlations in HRQOL global scores trended higher in CI recipients (r = 0.50) than NH1 (r = 0.42) and NH2 (r = 0.35) controls.

Conclusions

CI recipients report HRQOL comparable to NH peers. These results, from both child and parent perspective, lend support to the effectiveness of CI intervention in mitigating the impact of early childhood deafness. Family stress was associated with worse HRQOL, underscoring a potential therapeutic target. Parent–child agreement in HRQOL scores was higher for CI families than NH families, which may reflect higher caregiver insight and involvement related to the CI intervention.     

Quality of life in patients with chronic venous disease in Turkey: influence of different treatment modalities at 6-month follow-up

Purpose

The main purpose of this study was to evaluate the influence of any of the four domains of the QoL score in CVD patients of classes C0–C4 and to analyze the correlation between the QoL and types of treatment modalities, and an additional aim of the present study was to compare QoL levels of patients with CVD and healthy participants and was to examine the factors associated with QoL in CVD patients.

Methods

The sample was composed of 501 patients with primary superficial venous reflux (28.5 % male and 71.5 % female) who answered 100 % of the questions in the World Health Organization Quality of Life (WHOQoL-BREF) questionnaire. After a clinical and duplex examination, the patients were categorized as C0–C4, according to the CEAP classification. The relationships between WHOQoL-BREF domains and gender, age, occupation, BMI, the clinical classes of the CEAP classification and four different treatment modalities according to guideline were analyzed.

Results

For the WHOQOL-BREF test battery, the patients with CVD had worse values, as compared with the control group participants. The differences were significant for the physical (77.81 ± 12.75 vs. 59.18 ± 12.90, p < 0.001), the psychological (74.78 ± 11.37 vs. 60.21 ± 14.70, p < 0.001), the social relationships (76.56 ± 13.56 vs. 63.07 ± 21.37, p < 0.001) and the environmental (70.27 ± 13.36 vs. 50.16 ± 11.39, p < 0.001) health scores. The patients with CVD had worse WHOQOL-BREF scores at initial, compared with the 6-month follow-up scores.

Conclusion

This study shows that in spite of undergoing therapy, the subsequent QoL scores did not improve significantly, indicating that CVD continued to negatively affect the patient’s life.

     

Sustained quality of life improvement after intracoronary injection of autologous bone marrow cells in the setting of acute myocardial infarction: results from the BONAMI trial

Purpose

Cardiac cell therapy is a promising treatment for acute myocardial infarction (AMI), leading to cardiac function improvement. However, whether it translates into quality of life (QoL) improvement is unclear. We hypothesized that administration of bone marrow cells (BMC) to patients with AMI improves QoL.

Methods

In the multicenter BONAMI trial (NCT00200707), patients with reperfused AMI and decreased myocardial viability were randomized to intracoronary autologous BMC infusion (n = 52) or state-of-the-art therapy (n = 49). QoL data, derived from the Minnesota Living with Heart Failure questionnaire (MLHFQ), were obtained 1, 3, and 12 months after AMI and analyzed using a Rasch-family model.

Results

Using this model, QoL improved over time in the BMC group (p = 0.025) but not in the control group. Furthermore, the BMC-group patients displayed a better QoL than the control-group patients at 3 and 12 months post-AMI (p = 0.034 and p = 0.003, respectively). These findings were not detected when analyzing MLHFQ data using a standard method. Cardiac function, myocardial viability, mortality, and number of major adverse cardiac events did not differ between treatment groups.

Conclusion

Our results suggest that BMC therapy can improve QoL, stressing the need for confirmation trials and for systematic QoL assessment in cardiac cell therapy trials .

     

Prognostic value of quality of life measured after treatment on subsequent survival in patients with nasopharyngeal carcinoma

Purpose

Pretreatment quality of life (QoL) has been used to predict survival in cancer patients. In this study, we examined the prognostic value of QoL measured after treatment on subsequent survival in patients with nasopharyngeal carcinoma (NPC).

Methods

We enrolled 273 patients with NPC who had been curatively treated for more than 1 year. The EORTC QLQ-C30 and H&N35 questionnaires were completed 1 year after radiotherapy. The predictability of QoL variables on disease-specific survival (DSS) and overall survival (OS) was analyzed using Cox’s proportional hazards models.

Results

Twenty-nine (10.6 %) patients developed locoregional relapse and 27 (9.9 %) had distant metastasis after the QoL survey with subsequent 5-year DSS and OS rates of 87.9 % and 84.0 %, respectively. Based on the QLQ-C30, scales of physical functioning, fatigue, and appetite loss significantly predicted DSS and OS (p < 0.05). In the H&N35, only sexuality was significantly correlated with DSS and OS (p < 0.05). An increment of 10 points in physical functioning (HR: 0.69; 95 % CI: 0.48–0.90; p = 0.004) or a decline of 10 points in fatigue problems (HR: 1.40; 95 % CI: 1.19–1.61; p = 0.0002), appetite loss (HR: 1.21; 95 % CI: 1.03–1.40; p = 0.02), and sexuality (HR: 1.14; 95 % CI: 1.02–1.25; p = 0.019) was associated with better OS.

Conclusion

Some QoL variables measured after the treatment provide prognostic value on subsequent survival in patients with NPC.     

Impact of nocturnal calf cramping on quality of sleep and health-related quality of life

Purpose

To evaluate the impact of nocturnal calf cramping (a condition that affects one in two people over 60 years of age) on quality of sleep and health-related quality of life.

Methods

Eighty adults who experienced nocturnal calf cramp at least once per week and eighty age- and sex-matched controls who never experienced nocturnal cramp were recruited from the Greater Newcastle and Central Coast regions of New South Wales, Australia. All participants completed the SF-36v2 and the Medical Outcomes Study Sleep Survey (MOS-SS).

Results

People who experienced nocturnal muscle cramps reported more sleep disturbance (p < 0.001), less adequate sleep (p = 0.001), less quantity of sleep (p = 0.02) and more snoring (p = 0.03). Both sleep problem summary indices for the MOS-SS identified people who experienced nocturnal muscle cramp as having more sleep problems than the controls. People who experienced nocturnal muscle cramps had lower health-related quality of life for the SF-36 domains role physical (p = 0.007), bodily pain (p = 0.003) and general health (p = 0.02). SF-36 domains that primarily relate to mental health were not significantly different between groups. The impact of nocturnal calf cramps on health-related quality of life was largely explained by their negative impact on quality of sleep.

Conclusions

Nocturnal calf muscle cramps are associated with substantially reduced quality of sleep and reduced physical aspects of health-related quality of life.     

Parent-reported cognition of children with cancer and its potential clinical usefulness

Purpose

Cognitive dysfunction is a common concern for children with brain tumors (BTs) or those receiving central nervous system (CNS) toxic cancer treatments. Perceived cognitive function (PCF) is an economical screening that may be used to trigger full, formal cognitive testing. We assessed the potential clinical utility of PCF by comparing parent-reported scores for children with cancer with scores from the general US population.

Methods

Children (n = 515; mean age = 13.5 years; 57.0 % male) and one of their parents were recruited from pediatric oncology clinics. Most children (53.3 %) had a diagnosis of CNS tumor with an average time since diagnosis of 5.6 years. PCF was evaluated using the pediatric PCF item bank (pedsPCF), which was developed and normed on a sample drawn from the US general pediatric population. Children also completed computer-based neuropsychological tests. We tested relationships between PCF and clinical variables. Differential item functioning (DIF) was used to evaluate measurement bias between the samples.

Results

No item showed DIF, supporting the use of pedsPCF in the cancer sample. PedsPCF differentiated children with (vs. without) a BT, p < 0.01, and groups defined by years since diagnosis, p < 0.01. It significantly (p < 0.05) correlated with computerized neuropsychological tests in 40 of 60 comparisons. Children with BTs were rated as having worse pedsPCF scores than the norm, regardless of years since diagnosis.

Conclusions

PCF significantly differentiated cancer survivors with various clinical characteristics. It is brief and easy to implement. PCF should be considered for routine care of pediatric cancer survivors.     

Quality of life and related variables in patients with ankylosing spondylitis

Objectives

To evaluate quality of life (QoL) and related variables in patients with ankylosing spondylitis (AS), a chronic inflammatory disease of the spine.

Methods

Nine-hundred and sixty-two patients with AS from the Turkish League Against Rheumatism AS Registry, who fulfilled the modified New York criteria, were enrolled. The patients were evaluated using the Assessment of SpondyloArthritis International Society core outcome domains including Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), fatigue (BASDAI-question 1), pain (last week/spine/due to AS), Bath Ankylosing Spondylitis Functional Index (BASFI), Bath Ankylosing Spondylitis Metrology Index (BASMI), Bath Ankylosing Spondylitis Radiology Index (BASRI), Maastricht Ankylosing Spondylitis Enthesitis Score (MASES) and two QoL questionnaires (the disease-specific ASQoL and generic the Short Form-36 [SF-36]).

Results

The mean ASQoL score was 7.1 ± 5.7. SF-36 subscales of general health, physical role and bodily pain had the poorest scores. ASQoL was strongly correlated with disease duration, BASDAI, fatigue, BASFI, BASMI, BASRI, MASES, pain and SF-36 subscales (P < 0.001). SF-36 subscales were also strongly correlated with BASDAI and BASFI. Advanced educational status and regular exercise habits positively affected QoL, while smoking negatively affected QoL.

Conclusions

In patients with AS, the most significant variables associated with QoL were BASDAI, BASFI, fatigue and pain. ASQoL was noted to be a short, rapid and simple patient-reported outcome (PRO) instrument and strongly correlated with SF-36 subscales.     

Quality of life as a predictor of overall survival after breast cancer treatment

Purpose

To describe quality of life (QoL) in a cohort of surviving women 4 years after breast cancer treatment and to analyze its role as a predictor of mortality within 2 years.

Methods

This is a prospective cohort study of 544 women who have undergone surgical treatment, from 2001 to 2002 and who answered a questionnaire about QoL in 2006. After, we conducted a survival study to evaluate the association between QoL and mortality within 2 years with the same population. We conducted factor analysis between the variables of the scales of function and symptoms. Survival analysis was conducted by Kaplan–Meier, and differences in survival curves were assessed with the log-rank test, assuming significant statistical level of 5 %. The Cox proportional hazards regression model was used to explore the relationship between QoL variables (functional scales) and prognostic value for survival.

Results

The mean age of the women was 59.1 years (SD 11.66). The mean of overall QoL score was 75.16 (SD 20.93). Using factor analysis, we identified three conditions that made up the construct of QoL in this group of patients: social, psycho-emotional, and physical. Social condition was the most important factor. After assessment of QoL, the mean survival was 23 months (SD 3.90). Women who reported worse future perspective had higher chance of death compared with women better prospect of future (HR = 3.46; 95 % CI 1.36–8.79; p value = 0.009).

Conclusion

Future perspectives were predictors of mortality, which reinforce the relevance of social support and psychological aspects for these women.     

Health-related quality of life in children with obstetrical brachial plexus palsy

Purpose

We aimed to determine the health-related quality of life (HRQL) of children with obstetrical brachial plexus palsy (OBPP) and examine its association with gender, age, injury level, injured side, and functional status.

Methods

We conducted a controlled, cross-sectional study including 70 children with OBPP. Fifty-two age-matched children without any health problems were included as controls. HRQL was assessed with the short parent form of the Child Health Questionnaire (CHQ-PF28), and functional status was measured using the active movement scale (AMS).

Results

Children with OBPP scored significantly lower on most of the CHQ-PF28 subscales than the healthy controls (p < 0.05). Gender or age did not significantly affect scores in any domain (p > 0.05). CHQ-PF28 scores showed that there were significant differences according to the side of injury between groups, especially in the “parental impact-time” and “family activities” domains (p < 0.05). There were no statistically significant differences in CHQ-PF28 scores between groups that had an upper trunk involvement and total injury groups (p > 0.05), except in the “bodily pain/discomfort” domain (p < 0.05). The AMS score was weakly to moderately correlated with the “mental health” and “parental impact-time” and “general health perceptions” domains.

Conclusion

The study demonstrated that children with OBPP have a poorer HRQL than their healthy peers. Side of injury, limitations in shoulder flexion, shoulder internal rotation, elbow flexion, elbow extension, and forearm supination were important factors affecting the HRQL of the children. The health concepts and factors discussed in the study can guide clinicians aiming to improve QoL of children with OBPP.     

Evaluation of the similarities and differences in response patterns to the Pediatric Quality of Life Inventory and the Child Oral Health Impact Scores among youth with cleft

Purpose

To examine (a) the pattern of responses to a generic health-related quality of life (HRQL) measure (Pediatric Quality of Life Inventory—PedsQL) and an oral health-related quality of life (OHRQoL) measure (Child Oral Health Impact Profile—COHIP), and (b) the associations of these scores with surgical recommendation status among youth with cleft.

Methods

Cross-sectional data (baseline) regarding clinicians’ surgical recommendations and quality of life (QoL) measures were examined from an ongoing observational study on treatment outcomes. Approximately one-third of the racially and geographically diverse sample (N = 1,200; $\bar{x}$  = 11.6 years) received surgical recommendations to correct either visible (aesthetic) or invisible (functional) defects. Effect sizes were used to quantify differences in QoL based on surgical recommendation and to compare the sensitivity of the PedsQL and COHIP subscales. Using Pearson coefficients, the scores of those recommended for surgery were compared with those without a surgical recommendation.

Results

A moderate correlation (0.52) was found between the total scores on the PedsQL and COHIP (p < 0.0001). Subscale correlations between the QoL measures ranged from 0.19 to 0.48 with the strongest correlation between the PedsQL Emotional (r = 0.47) and COHIP Socioemotional Well-being subscale. The effect size for the COHIP Socioemotional Well-being (0.39) was larger than the PedsQL Social/Emotional (0.07/0.11) subscale (Z = 5.30/Z = 4.64, p < 0.0001, respectively), and the total COHIP (0.31) was significantly greater than the total PedsQL scale (0.15, z = 2.65, p = 0.008).

Conclusions

A significant relationship was found between generic HRQL, OHRQoL, and surgical needs among youth with cleft with the COHIP having larger effect sizes than the PedsQL among surgical groups.