Josué Almansa

Pediatric Health-Related Quality of Life: A Structural Equation Modeling Approach

Objectives One of the most referenced theoretical frameworks to measure Health Related Quality of Life (HRQoL) is the Wilson and Cleary framework. With some adaptions this framework has been validated in the adult population, but has not been tested in pediatric populations. Our goal was to empirically investigate it in children. Methods The contributory factors to Health Related Quality of Life that we included were symptom status (presence of chronic disease or hospitalizations), functional status (developmental status), developmental aspects of the individual (social-emotional) behavior, and characteristics of the social environment (socioeconomic status and area of education). Structural equation modeling was used to assess the measurement structure of the model in 214 German children (3–5 years old) participating in a follow-up study that investigates pediatric health outcomes. Results Model fit was χ2u200a=u200a5.5; dfu200a=u200a6; pu200a=u200a0.48; SRMR u200a=u200a0.01. The variance explained of Health Related Quality of Life was 15%. Health Related Quality of Life was affected by the area education (i.e. where kindergartens were located) and development status. Developmental status was affected by the area of education, socioeconomic status and individual behavior. Symptoms did not affect the model. Conclusions The goodness of fit and the overall variance explained were good. However, the results between children and adults tests differed and denote a conceptual gap between adult and children measures. Indeed, there is a lot of variety in pediatric Health Related Quality of Life measures, which represents a lack of a common definition of pediatric Health Related Quality of Life. We recommend that researchers invest time in the development of pediatric Health Related Quality of Life theory and theory based evaluations.

Childhood Adversities and Educational Attainment in Young Adulthood: The Role of Mental Health Problems in Adolescence

PURPOSEnThe aims of this study were to examine whether the association between childhood adversities and educational attainment in young adulthood can be explained by mental health problems in adolescence and whether associations and pathways differ for boys and girls.nnnMETHODSnData were used of 2,230 participants from the Tracking Adolescents Individual Lives Survey, a Dutch prospective cohort study with a 9-year follow-up. Childhood adversities were measured at age 11 years, mental health problems (i.e., externalizing, internalizing and attention problems with Youth Self-Report) at age 16 years, and educational attainment at age 19 years. Structural equation modeling was performed to analyze the data, overall and stratified by gender.nnnRESULTSnOnly among boys, childhood adversities were associated with low educational attainment in young adulthood. Externalizing problems in adolescence explained 5% of the association between childhood adversities and educational attainment. Furthermore, for both boys and girls, externalizing problems in adolescence had a direct effect on educational attainment in young adulthood.nnnCONCLUSIONSnAmong boys, childhood adversities are associated with poorer educational outcomes of young adults. A part of this association runs via adolescent externalizing problems. The results suggest that boys, compared with girls, are less capable to cope with childhood adversities. Monitoring of exposed boys to childhood adversities is of utmost importance.

Beyond Return to Work: The Effect of Multimorbidity on Work Functioning Trajectories After Sick Leave due to Common Mental Disorders

Objectives Patients with common mental disorders (CMDs) often suffer from comorbidities, which may limit their functioning at work. We assessed the longitudinal impact of multimorbidity, defined as two or more co-occurring chronic health conditions, on work functioning over time among workers who had returned to work after sick leave due to CMDs. Methods Prospective cohort study of 156 workers followed for 1xa0year after return to work from sick leave due to CMDs. A multimorbidity score was computed by counting severity-weighted chronic health conditions measured at baseline. Work functioning was measured at baseline and at 3, 6 and 12xa0months follow-up with the Work Role Functioning Questionnaire. Work functioning trajectories, i.e. the course of work functioning after return to work over time, were identified through latent class growth analysis. Results A total of 44xa0% of workers had multimorbidity. Four work functioning trajectories were identified: one (12xa0% of the workers) showed increasing work functioning scores during follow-up, whereas the other trajectories showed low, medium and high scores (23, 41 and 25xa0%, respectively) that remained stable across time points. Although multimorbidity did not predict membership in any trajectory, within the increasing score trajectory levels of work functioning were lower among those with high baseline multimorbidity score (pxa0<xa00.001). Conclusions Over time, multimorbidity negatively impacts work functioning after return to work from sick leave due to CMDs.

Associations between shift schedule characteristics with sleep, need for recovery, health and performance measures for regular (semi-)continuous 3-shift systems

In this cross-sectional study associations were examined between eight shift schedule characteristics with shift-specific sleep complaints and need for recovery and generic health and performance measures. It was hypothesized that shift schedule characteristics meeting ergonomic recommendations are associated with better sleep, need for recovery, health and performance. Questionnaire data were collected from 491 shift workers of 18 companies with 9 regular (semi)-continuous shift schedules. The shift schedule characteristics were analyzed separately and combined using multilevel linear regression models. The hypothesis was largely not confirmed. Relatively few associations were found, of which the majority was in the direction as expected. In particular early starts of morning shifts and many consecutive shifts seem to be avoided. The healthy worker effect, limited variation between included schedules and the cross-sectional design might explain the paucity of significant results.

The extremity function index (EFI), a disability severity measure for neuromuscular diseases: psychometric evaluation

Abstract Objective: To adapt and to combine the self-report Upper Extremity Functional Index and Lower Extremity Function Scale, for the assessment of disability severity in patients with a neuromuscular disease and to examine its psychometric properties in order to make it suitable for indicating disease severity in neuromuscular diseases. Design: A cross-sectional postal survey study was performed among patients diagnosed with a neuromuscular disease. Methods: Patients completed both adapted extremity function scales, questionnaires for psychometric evaluation, and disease-specific questions. Confirmatory factor analysis was performed, and reliability and validity were examined. Results: Response rate was 70% (nu2009=u2009702). The Extremity Function Index model with a two-factor structure – for upper and lower extremities – showed an acceptable fit. The Extremity Function Index scales showed good internal consistency (alphas: 0.97–0.98). The known-groups validity test confirmed that Extremity Function Index scales discriminate between categories of “Extent of limitations” and “Quality of Life.” Convergent and divergent validity tests confirmed that Extremity Function Index scales measure the physical impact of neuromuscular diseases. Relative validity tests showed that the Extremity Function Index scales performed well in discriminating between subgroups of patients with increasing “Extent of limitations” compared to concurrent measurement instruments. Conclusion: The Extremity Function Index proved to be a sound and easy to apply self-report disability severity measurement instrument in neuromuscular diseases. Implications for rehabilitation The Extremity Function Index reflects the functioning of all muscles in the upper and lower extremities involved in activities of daily living. The Extremity Function Index is an easy to administer and patient-friendly disability severity measurement instrument that has the ability to evaluate differences in disability severity between relevant neuromuscular disease subgroups. The Extremity Function Index is a valid and reliable disability severity measurement instrument for neuromuscular diseases.

Co-morbidity of depression, anxiety and fatigue in cancer patients receiving psychological care

This study aimed to examine (1) subgroups of cancer patients with distinct co‐morbidity patterns of depression, anxiety and fatigue; (2) how individuals transitioned between these patterns; and (3) whether socio‐demographic, clinical and psychological care characteristics distinguished patients transitions.

Distinct Trajectories of Positive and Negative Affect After Colorectal Cancer Diagnosis

Objective: Insight into trajectories of positive affect (PA) and negative affect (NA) across the cancer continuum may improve understanding of the nature of adjustment problems. The primary aim of this study was to identify subgroups of patients with distinct trajectories of PA and NA following diagnosis of colorectal cancer (CRC). Secondary to this aim, the co-occurrence between trajectories and their association with goal-related processes was explored. Method: CRC patients (n = 186) completed questionnaires within 1 month, 7 months, and 18 months after diagnosis. Multilevel models were used to study the trajectory of PA and NA, as measured with the Positive and Negative Affect Schedule (PANAS). Results: Four classes with distinct PA trajectories were identified: low (18.8%), increasing (6.7%), moderate (68.2%), and high (6.3%); 2 trajectories of NA emerged: low (36.3%) and moderate (63.7%). There was no significant association between PA and NA trajectory class probabilities. The average trajectory of PA covaried with levels of goal disturbance and goal reengagement over time, while the average NA trajectory covaried with goal disturbance and goal disengagement. Conclusions: Compared with the general population, our sample of cancer patients suffered from a lack of positive emotions, but not a high presence of negative emotions. About one fifth of patients reported low PA up to 18 months after diagnosis and may benefit from supportive care. Furthermore, the trajectory of PA was independent of that of NA and related with a distinct goal adjustment process (i.e., goal disengagement vs. goal reengagement). This finding indicates the need to tailor psychological care to the nature of the adjustment problem.

Clinically distinct trajectories of fatigue and their longitudinal relationship with the disturbance of personal goals following a cancer diagnosis

OBJECTIVESnMost studies on fatigue in patients with cancer aggregate its prevalence and severity on a group level, ignoring the possibility that subgroups of patients may differ widely in their development of fatigue. This study aimed to identify subgroups of patients with clinically distinct trajectories of fatigue from diagnosis to 18xa0months post-diagnosis. As fatigue might trigger goal disturbance, the study also identified trajectories of concrete and abstract goal disturbance and longitudinally examined their co-occurrence with fatigue.nnnDESIGNnProspective design with quantitative and qualitative method of data collection.nnnMETHODSnPatients with colorectal cancer (nxa0=xa0183) reported on their levels of fatigue and goal disturbance shortly after diagnosis (T1 ) and at 7xa0months (T2 ) and 18xa0months (T3 ) post-diagnosis. Growth mixture model analyses were performed to identify trajectories of fatigue and goal disturbance. Guidelines for the clinical relevance of fatigue were applied.nnnRESULTSnFour clinically distinct trajectories of fatigue were identified as follows: (1) persistent severe fatigue (25.4%), (2) moderate fatigue (56.1%), (3) no fatigue (13.8%), and (4) rapidly improving fatigue (4.7%). The majority of patients with cancer reported high disturbance of their concrete goals, while high disturbance of abstract goals was less evident. Fatigue and concrete goal disturbance co-occurred longitudinally.nnnCONCLUSIONSnThe fatigue and goal disturbance experienced from diagnosis to 18xa0months post-diagnosis differ considerably for subgroups of patients with cancer. Fatigue and concrete goal disturbance are persistent burdens in the majority of patients. Investigating symptom burden beyond average trends can guide clinicians to identify patients most in need for treatment. Targeting goal disturbance might benefit the psychological well-being in patients suffering from persistent symptoms. Statement of contribution What is already known on this subject? Fatigue is a common and distressing symptom at all stages of the cancer experience. Earlier studies suggest that many patients recover from fatigue after treatment completion. Patients with cancer experience disturbance in their personal goals, which is related to poor psychological well-being. What does this study add? Developments of fatigue and goal disturbance differ between subgroups of patients with cancer but co-occur within these subgroups. About 30% of the patients experience severe fatigue after diagnosis, of which only few patients recover within 18xa0months post-diagnosis. Targeting goal disturbance might benefit patients with severe and ongoing symptoms.

Stability and relative validity of the Neuromuscular Disease Impact Profile (NMDIP)

BackgroundThe aim of this study was to examine the stability and relative validity (RV) of the Neuromuscular Disease Impact Profile (NMDIP) using criterion-related groups. In a previous study the NMDIP-scales showed good internal consistency, convergent and discriminant validity. Known-groups analysis showed that the NMDIP discriminates between categories of extent of limitations.MethodsA cross-sectional postal survey study was performed on patients diagnosed with a NMD and registered at the Department of Neurology, University Medical Center Groningen, the Netherlands.Participants were asked to complete the preliminary NMDIP, the Medical Outcome study Short Form Questionnaire (SF-36), the World Health Organization Quality Of Life-abbreviation version (WHOQOL-bref), and two generic domain specific measures: the Groningen Activity Restriction Scale (GARS) and the Impact on Participation and Autonomy Questionnaire (IPAQ). The variables ‘Extent of Limitations’ and ‘Quality of Life’ were used to create criterion-related groups. Stability over time was tested using the Wilcoxon Signed Rank Test for paired samples and the intraclass correlation coefficients for repeated measures. RV was examined by comparing the ability of NMDIP with generic multidimensional health impact measures, and domain specific measures in discriminating between criterion-related subgroups using the Kruskal-Wallis H-test.ResultsResponse rate was 70% (nxa0=xa0702). The NMDIP-scales showed sufficient stability over time, and satisfactory or strong RV. In general, the NMDIP scales performed as well as or better than the concurrent measurement instruments.ConclusionsThe NMDIP proved to be a valid and reliable disease-targeted measure with a broad scope on physical, psychological and social functioning.

The prevalence and severity of disease-related disabilities and their impact on quality of life in neuromuscular diseases

Abstract Purpose: People with neuromuscular disease experience lower quality of life levels than people from the general population. We examined the prevalence and severity of a broad range of neuromuscular disease-related disabilities and their impact on health-related quality of life. Materials and methods: A cross-sectional postal survey study was conducted among patients diagnosed with neuromuscular disease. Patients completed the Neuromuscular Disease Impact Profile, a disease-related disability impact questionnaire, and two generic health-related quality of life questionnaires: the medical outcome study Short Form Questionnaire and the World Health Organization Quality of Life-bref. The impact of disabilities on quality of life was estimated using multiple regression analyses. Results: Six hundred sixty two patients (68% response rate) completed the questionnaires. There were no differences in quality of life between diagnosis-based subgroups. ‘Impairments in muscle functions’ had the highest prevalence and severity scores in the total sample and diagnosis-based subgroups. Neuromuscular disease-related disabilities showed strong and independent associations with all aspects of health-related quality of life. ‘Impairments in mental functions and pain’ was the most important predictor of health-related quality of life followed by ‘restrictions in participation in life situations’. Conclusions: Although ‘impairment in muscle functions’ is the most prevalent and severe disability, the ‘impairments in mental functions and pain’ have a strong association with health-related quality of life in patients with a neuromuscular disease. Implications for rehabilitation Disease-related disabilities have a strong and independent associations with all aspects of health-related quality of life. Although health-related domains of quality of life are affected by the neuromuscular disease, the general quality of life is quite good. The most prevalent and severe disability in total group and diagnosis-based subgroups is ‘impairments in muscle functions’. The most significant predictor in health-related quality of life is ‘impairments in mental functions and pain’.