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Health related quality of life assessment in Pakistani
paediatric cancer patients using PedsQLTM 4.0
generic core scale and PedsQLTM cancer module
Background:
The purpose of the study was to evaluate and compare the HRQOL of paediatric cancer incomparison to the healthy children across age groups, using PedsQLTM 4.0 Generic CoreScales and the PedsQLTM Cancer Module.MethodThe PedsQLTM 4.0 Generic Core Scales and PedsQL Cancer Module 3.0 were administeredon 56 children including 26 cancer patients and 30 healthy children while employing self andproxy report forms. Furthermore, the results were compared with their healthy comparisongroup.
Results:
The results indicated a significant relationship between HRQOL reports of cancer patientsand their parents. However, the mean of paediatric cancer patients is significantly lower ascompare to their healthy comparison group. The mean of proxy report is lower overall onboth PedsQL and PedsQL cancer module reports.
Conclusion:
Conclusively, overall HRQOL of cancer patients was lower than healthy children but it isquite similar to their parents' perception. Whereas, the parental mean on PedsQL and PedsQL3.0 Cancer Module are significantly low. The study indicated a marked difference betweencancer patients and healthy children's HRQOL perception and unfortunately in country likePakistan where cancer is on increase, no significant work has yet been done to explore this area of research. The present study highlighted the need to focus on the particularpsychological health services required to serve the physically challenged population.
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Validation of the Neurological Fatigue Index for Stroke (NFI-Stroke)
Background Fatigue is a common symptom in Stroke. Several self-report scales are available to measure this debilitating symptom but concern has been expressed about their construct validity.Objective To examine the reliability and validity of a recently developed scale for multiple sclerosis (MS) fatigue, the Neurological Fatigue Index (NFI-MS), in a sample of stroke patients.Method Six patients with stroke participated in qualitative interviews which were analysed and the themes compared for equivalence to those derived from existing data on MS fatigue. 999 questionnaire packs were sent to those with a stroke within the past four years. Data from the four subscales, and the Summary scale of the NFI-MS were fitted to the Rasch measurement model.Results Themes identified by stroke patients were consistent with those identified by those with MS. 282 questionnaires were returned and respondents had a mean age of 67.3 years; 62% were male, and were on average 17.2 (SD 11.4, range 2-50) months post stroke. The Physical, Cognitive and Summary scales all showed good fit to the model, were unidimensional, and free of differential item functioning by age, sex and time. The sleep scales failed to show adequate fit in their current format.Conclusion Post stroke fatigue appears to be represented by a combination of physical and cognitive components, confirmed by both qualitative and quantitative processes. The NFI-Stroke, comprising a Physical and Cognitive subscale, and a 10-item Summary scale, meets the strictest measurement requirements. Fit to the Rasch model allows conversion of ordinal raw scores to a linear metric.
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Oral health-related quality of life in an aging Canadian population
Background:
The purpose of the study is to describe the impact of oral health-related quality of life (OHRQoL) on the lives of pre-seniors and seniors living in Nova Scotia, Canada.
Methods:
This cross-sectional study involved 1461 participants, grouped by age (pre-seniors [45-64] and seniors [65+]) and residential status (long-term care facility [LTC] or community). OHRQoL was measured using the 14-item Oral Health Impact Profile questionnaire (OHIP-14) in a random digit dialing telephone survey (for community residents) or a face-to-face interview (for LTC residents). Intra-oral examinations were performed by one of six dentists calibrated to W.H.O. standards.
Results:
Approximately one in four pre-seniors and seniors reported at least one OHRQoL impact 'fairly/very often'. The most commonly reported impacts were within the dimensions 'physical pain' and 'psychological discomfort'. It was found that 12.2% of LTC residents found it uncomfortable to eat any foods 'fairly/very' often compared to 7.7% in the community, and 11.6% of LTC residents reported being self-conscious 'fairly/very often' compared to 8.2% in the community. Of those residing in the community, pre-seniors (28.8%) reported significantly more impacts than seniors (22.0%); but there were no significant differences in OHRQoL between pre-seniors (21.2%) and seniors (25.3%) in LTC. Pre-seniors living in the community scored significantly higher than community dwelling seniors on prevalence, extent and severity of OHIP-14 scores. Logistic regression revealed that for the community dwelling sample, individuals living in rural areas in addition to those being born outside of Canada were approximately 2.0 times more likely to report an impact 'fairly/very often', whereas among the LTC sample, those having a high school education or less were 2.3 times more likely to report an impact.
Conclusions:
Findings indicate that the oral health and OHRQoL of both pre-seniors and seniors in LTC residents is poor. Community dwelling pre-seniors have the highest prevalence rate of oral impacts.
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Long term follow-up of health-related quality of life
in young adults born very preterm or with a very
low birth weight
Background:
The purpose was, first, to evaluate changes in health-related quality of life (HRQL) in acohort of very low birth weight (VLBW; <1500 g.) or very preterm (< 32 weeks of gestation)children between ages 14 and 19, and second, to identify correlates of HRQL at age 19.
Methods:
HRQL was assessed using the Health Utilities Index Mark 3 (HUI3). In order to explorecorrelates of HRQL, we performed a hierarchical regression analysis.
Results:
Surviving VLBW children (n = 959) from a 1983 Dutch nation-wide cohort were eligible;630 participated both at age 14 and 19; 54 at age 19 only. The mean HRQL score decreasedfrom 0.87 to 0.86. The HRQL of 45% was stable, 25% were better and 30% were worse. Aregression model showed internalizing problems were related most strongly to HRQL.
Conclusions:
In the transition from adolescence to young adulthood, HRQL in Dutch VLBW children wasstable at the group level but varied at the individual level. HRQL was negatively associatedwith internalizing problems and also with physical handicaps. Long-term follow-up studieson the impact of VLBW on HRQL are all the more called for, given the growing number ofvulnerable infants surviving the neonatal period.
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Hemoglobin A1c
improvements and better diabetesspecific quality of life among participants
completing diabetes self-management programs: A
nested cohort study
Background:
Numerous primary care innovations emphasize patient-centered processes of care. Within thecontext of these innovations, greater understanding is needed of the relationship betweenimprovements in clinical endpoints and patient-centered outcomes. To address this gap, we evaluated the association between glycosylated hemoglobin (HbA1c) and diabetes-specificquality of life among patients completing diabetes self-management programs.
Methods:
We conducted a retrospective cohort study nested within a randomized comparativeeffectiveness trial of diabetes self-management interventions in 75 diabetic patients. Multiplelinear regression models were developed to examine the relationship between change inHbA1c from baseline to one-year follow-up and Diabetes-39 (a diabetes-specific quality oflife measure) at one year.
Results:
HbA1c levels improved for the overall cohort from baseline to one-year follow-up (t(74) = 3.09, p = .0029). One-year follow up HbA1c was correlated with worse overall qualityof life (r = 0.33, p = 0.004). Improvements in HbA1c from baseline to one-year follow-up wereassociated with greater D-39 diabetes control (beta = 0.23, p = .04) and D-39 sexual functioning(beta = 0.25, p = .03) quality of life subscales.
Conclusions:
Improvements in HbA1c among participants completing a diabetes self-management programwere associated with better diabetes-specific quality of life. Innovations in primary care thatengage patients in self-management and improve clinical biomarkers, such as HbA1c, mayalso be associated with better quality of life, a key outcome from the patient perspective.
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Comparison of the burden of illness for adults with ADHD across seven countries: a qualitative study
Background:
The purpose of this study was to expand the understanding of the burden of illness experienced by adults with Attention Deficit-Hyperactivity Disorder (ADHD) living in different countries and treated through different health care systems.
Methods:
Fourteen focus groups and five telephone interviews were conducted in seven countries in North America and Europe, comprised of adults who had received a diagnosis of ADHD. The countries included Canada, France, Germany, Italy, The Netherlands, United Kingdom, and United States (two focus groups in each country). There were 108 participants. The focus groups were designed to elicit narratives of the experience of ADHD in key domains of symptoms, daily life, and social relationships. Consonant with grounded theory, the transcripts were analyzed using descriptive coding and then themed into larger domains.
Results:
Participants' statements regarding the presentation of symptoms, childhood experience, impact of ADHD across the life course, addictive and risk-taking behavior, work and productivity, finances, relationships and psychological health impacts were similarly themed across all seven countries. These similarities were expressed through the domains of symptom presentation, childhood experience, medication treatment issues, impacts in adult life and across the life cycle, addictive and risk-taking behavior, work and productivity, finances, psychological and social impacts.
Conclusions:
These data suggest that symptoms associated with adult ADHD affect individuals similarly in different countries and that the relevance of the diagnostic category for adults is not necessarily limited to certain countries and sociocultural milieus.
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Mortality and health-related quality of life in
prevalent dialysis patients: comparison between 12-
items and 36-items short-form health survey
Background:
To assess health- related quality of life (HRQOL) with SF-12 and SF-36 and compare theirabilities to predict mortality in chronic dialysis patients, after adjusting for traditional riskfactors.
Methods:
The Short-Form Health Survey (SF-36) with the embedded SF-12 was applied in 301 dialysispatients cross-sectionally. Physical and mental component summary (PCS-36, MCS-36, PCS-12, and MCS-12) scores were calculated. Clinical and demographic data were collected.Mortality (followed for up to 4.5 years) was analyzed with Kaplan Meier plots and Coxproportional hazards, after censoring for renal transplantation. Exclusion factors wereobservation time <2 months (n = 21) and missing component summary scores (n = 10 for SF-36; n = 28 for SF-12), thus 252 patient were included in the analyses.
Results:
In 252 patients (60.2 +/- 15.5 years, 65.9% males, dialysis vintage 9.0, IQR 5.0-23.0 months),mortality during follow-up was 33.7%(85 deaths). Significant correlations were observedbetween PCS-36 and PCS-12 (rho = 0.93, p < 0.001) and between MCS-36 and MCS-12(rho = 0.95, p < 0.001). Mortality rate was highest in patients in the lowest quartile of PCS-12(chi2 = 15.3, p = 0.002) and PCS-36 (chi2 = 16.7, p = 0.001). MCS was not associated withmortality. Adjusted hazard ratios for mortality were 2.5 (95% CI 1.0-6.3, PCS-12) and 2.7(1.1 - 6.4, PCS-36) for the lowest compared with the highest ("best perceived") quartile ofPCS.
Conclusion:
Compromised HRQOL is an independent predictor of poor outcome in dialysis patients. TheSF-12 provided similar predictions of mortality as SF-36, and may serve as an applicableclinical tool because it requires less time to complete.
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Psychometric properties of the disease-specific health-related quality of life instrument VascuQoL in a Swedish setting.
Background:
Traditional outcome measures in peripheral arterial disease (PAD) provide insufficient information regarding patient benefit. It has therefore been suggested to add patient-reported outcome measures. The main aim of this study was to validate the Swedish Vascular Quality of Life questionnaire (VascuQoL) version, a patient-reported PAD-specific health-related quality of life (HRQoL) instrument.
Methods:
Two-hundred PAD patients were consecutively recruited from two university hospitals. Out of the 200 subjects, 129 had intermittent claudication and 71 had critical limb ischemia. Mean age was 70 +/- 9 y and 57% of the participants were male. All patients completed SF-36 and VascuQoL at the vascular outpatient clinic, when evaluated for invasive treatment. Risk factors and physiological parameters were registered. Construct validity was tested by correlation analysis versus SF-36 and was also assessed with multitrait/multi-item scaling analysis (MTMI). Sensitivity analysis regarding disease severity identification was performed. Reliability was assessed with Cronbach's alpha and responsiveness by standardized response mean (SRM) calculations.
Results:
Significant correlations were demonstrated between relevant subscales of VascuQoL and SF-36. MTMI showed acceptable construct validity, but some scaling-errors. VascuQoL significantly (p < 0.001) discriminated claudicants from critical limb ischemia patients. Cronbach's alpha was 0.94 and SRM 1.02 (sum score).
Conclusions:
The Swedish version of VascuQoL is valid and quantifies central aspects of HRQoL in PAD patients. Sensitivity analysis showed high ability to differentiate between disease severity and SRM illustrated excellent responsiveness. The relative abundance of items however makes use in the everyday clinical setting somewhat difficult.
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Development and validation of a new Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA) with focus on symptom burden
Background:
Arrhythmias can appear with a variety of symptoms, all from vague to pronounced and handicapping symptoms. Therefore, patient-reported outcomes (PROs) concerning symptom burden are important to assess and take into consideration in the care and treatment of patients with arrhythmias. The main purpose was to develop and validate a disease-specific questionnaire evaluating symptom burden in patients with different forms of arrhythmias.
Methods:
A literature review was conducted and arrhythmia patients were interviewed. Identified symptoms were evaluated by an expert panel consisting of cardiologists and nurses working daily with arrhythmia patients. SF-36 and Symptoms Checklist (SCL) were used in the validation of the new questionnaire Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia (ASTA).Homogeneity was evaluated with Spearman's correlations and Cronbach's alpha coefficient (alpha) was used to evaluate internal consistency. Construct validity was evaluated using item-total correlations and convergent and discriminant validity. For this, Spearman's correlations were calculated between the ASTA symptom scale, SCL and SF-36. Concurrent validity was validated by Spearman's correlations between the ASTA symptom scale and SCL.
Results:
The correlations between the different items in the ASTA symptom scale showed generally sufficient homogeneity. Cronbach's alpha coefficient was found to be satisfactory (alpha = 0.80; lower bound 95 % CI for alpha = 0.76). Construct validity was supported by item-total correlations where all items in the symptom scale were sufficiently correlated ([greater than or equal to]0.3). Convergent and discriminant validity was supported by the higher correlations to the arrhythmia-specific SCL compared to the generic SF-36. Concurrent validity was evaluated and there were sufficiently, but not extremely strong correlations found between the ASTA symptom scale and SCL.
Conclusions:
The nine items of the ASTA symptom scale were found to have good psychometric properties in patients with different forms of arrhythmias. Arrhythmia patients suffer from both frequent and disabling symptoms. The validated ASTA questionnaire can be an important contribution to PROs regarding symptom burden in arrhythmia patients.
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Participation and quality of life in children with
Duchenne muscular dystrophy using the
international classification of functioning, disability,
and health
Background:
Duchenne muscular dystrophy (DMD) is characterized by muscle damage and progressive loss of muscle function in male children. DMD is one of the most devastating genetically linked neuromuscular diseases for which there is currently no cure. Most clinical studies for DMD utilize a standard protocol for measurement exploring pathophysiology, muscle strength and timed tasks. However, we propose that beyond traditional measurements, examining broader components of health as emphasized by the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) may be of great value to children and their families, and important outcomes for future clinical trials.
Methods:
Forty boys with DMD and 10 healthy age-matched boys completed two self-report measures: the Children's Assessment of Participation and Enjoyment and the Pediatric Quality of Life Inventory 4.0. We investigated differences between the two groups with regard to participation in real life activities and perceived quality of life (QoL). Additionally, we compared participation in activities and QoL in younger and older boys with DMD.
Results:
Participation in physical activities was significantly lower in boys with DMD than healthy boys. Perceived QoL was markedly diminished in children with DMD relative to healthy controls, except in the emotional domain. The amount of time boys engage in an activity (frequency), as well as participation in social activities, declined for our older cohort of boys with DMD, but QoL in boys with DMD remained constant over time.
Conclusions:
The ICF-CY provides a conceptual framework and specific terminology that facilitates investigation of the consequences of impairment in children and youth. Our study is one of the first to explore self-report of participation in a cohort of boys with DMD. It was not surprising that activities of choice for boys with DMD were less physical in nature than healthy boys their age, but the consequences of less social engagement as the boys age is of great concern. Results from our study underscore the need to further evaluate activities that children elect to participate in, with special emphasis on facilitators and barriers to participation and how participation changes throughout the course of a disease.
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