Search

Purpose: Financial resources for health care are limited, so assessment of intervention effectiveness in terms of health in relation to its costs is important. Measuring health outcomes in cost-effectiveness analyses is usually done by health-related quality of life measures, like the EQ-5D. However, over the past decade, innovations on the conceptual level of health have evolved and novel approaches are rising such as the capability approach, subjective wellbeing, and Positive Health. This study assesses the psychometric properties of the subjective wellbeing-5 dimension (SWB-5D) outcome measure., Methods: A quantitative, cross-sectional study design was used to determine the concurrent and construct (convergent and known group) validity for the SWB-5D. Concurrent and convergent validity were estimated as correlations between the SWB-5D and the Dutch version of the EQ-5D, ICECAP-A, and PH-17. Assessment of known-groups validity was based on the variables illness, education, and the overall happiness (Cantril Ladder) and overall health scale (EQ-5D VAS)., Results: A representative sample of 1016 respondents of the Dutch population completed an online questionnaire. The SWB-5D showed reasonable concurrent validity and showed good convergent and known-group validity. The SWB-5D had a lower ceiling effect compared to the EQ-5D and ICECAP-A., Conclusion: Compared to traditional health measurement approaches, novel approaches are more focused on the mental and social pillars of health. The SWB-5D shows psychometric feasibility of comprehensive measurement of health, as indicated by a range of validity measures in a large representative sample of the Dutch population., (© 2022. The Author(s).)

Objective: To evaluate treatment preferences of patients with lower urinary tract symptoms suggestive of benign prostatic hyperplasia (LUTS/BPH) before and after using a web-based decision aid (DA)., Patients and Methods: Between July 2016 and January 2017 patients were invited to use a web-based LUTS/BPH DA. Treatment preferences (for lifestyle advices, medication or surgery) before and after DA use and responses on values clarification exercises were extracted from the DA., Results: In total, 126 patients were included in the analysis. Thirty-four percent (43/126) had not received any previous treatment and were eligible for (continuation of) lifestyle advices or to start medication, as initial treatment. The other 66% (83/126) did use medication and were eligible, either for continuing medication or to undergo surgery. Before being exposed to the DA, 67 patients (53%) were undecided and 59 patients (47%) indicated an initial treatment preference. Half of the patients who were initially undecided were able to indicate a preference after DA use (34/67, 51%). Of those with an initial preference, 80% (47/59) confirmed their initial preference after DA use. Five out of 7 values clarification exercises used in the DA were discriminative between final treatment preferences. In 79%, the treatment preferred after DA use matched the received treatment. Overall, healthcare providers were positive about DA feasibility., Conclusion: Our findings suggest that a LUTS/BPH DA may help patients to confirm their initial treatment preference and support them in forming a treatment preference if they did not have an initial preference., (Copyright © 2019 Elsevier Inc. All rights reserved.)

Objective: The objective of this study is to test if patients' health-related quality of life (HRQoL) declines after prostate biopsy to detect Pca, and after subsequent treatment decision-making in case Pca is confirmed, and to test whether personality state and traits are associated with these potential changes in HRQoL., Methods: Patients who were scheduled for prostate biopsy to detect Pca (N = 377) filled out a baseline questionnaire about HRQoL (EORTC QLQ-C30 and PR25), "big five" personality traits (BFI-10), optimism (LOT-r), and self-efficacy (Decision Self-efficacy Scale) (t0). Patients with confirmed Pca (N = 126) filled out a follow-up questionnaire on HRQoL within 2 weeks after treatment was chosen but had not yet started (t1)., Results: HRQoL declined between t0 and t1, reflected in impaired role and cognitive functioning, and elevated fatigue, constipation, and prostate-specific symptoms. Sexual activity and functioning improved. Baseline HRQoL scores were unrelated to the selection of a particular treatment, but for patients who chose a curative treatment, post-decision HRQoL showed a greater decline compared to patients who chose active surveillance. Optimism was associated with HRQoL at baseline; decisional self-efficacy was positively associated with HRQoL at follow-up. No associations between HRQoL and the "big five" personality traits were found., Conclusion: Patients who have undergone prostate biopsy and treatment decision-making for Pca experience a decline in HRQoL. Choosing treatment with a curative intent was associated with greater decline in HRQoL. Interventions aimed at optimism and decision self-efficacy could be helpful to reduce HRQoL impairment around the time of prostate biopsy and treatment decision-making.

Background: Health-related quality of life in patients with Addison's disease has been assessed in various European countries, indicating a reduced quality of life. However, no studies have addressed the impact of Addison's disease on physical activity., Objective: The aim of this study was to investigate the quality of life in Dutch patients with Addison's disease particularly regarding the presence of fatigue and the ability to be physically active., Methods: In this cross-sectional study, a postal survey was performed among Dutch patients with Addison's disease on stable glucocorticoid replacement therapy with hydrocortisone or cortisone acetate. For quality of life and physical activity assessment, patients completed general and health-related quality of life and physical activity questionnaires, and scores were compared to Dutch controls., Results: A total of 328 patients with Addison's disease were studied. In patients with Addison's disease, only 45·7% met the standard of physical activity (Combinorm) compared to 67·8% of Dutch controls (P < 0·01). Forty-eight per cent of patients showed abnormal fatigue, while 61% had severe fatigue. The CIS fatigue scores were significantly higher compared to controls (P < 0·01). We found reduced general subjective health-related QoL scores in both male and female patients, especially in younger patients <65 years of age., Conclusion: Physical activity is decreased in patients with Addison's disease, combined with a reduced subjective health-related QoL and increased fatigue., (© 2016 John Wiley & Sons Ltd.)

Objective: To determine the satisfaction with information received by prostate cancer survivors and associations with health-related quality of life (HRQoL) and illness perception., Methods: A cross-sectional study was performed among 999 patients diagnosed between 2006 and 2009. All patients received a questionnaire on HRQoL (EORTC QLQ-C30), illness perception (B-IPQ) and satisfaction with information provision (EORTC QLQ-INFO-25). Multivariate regression analyses were performed to assess the association between satisfaction with information provision and HRQoL as well as illness perception., Results: Response rate was 70% (N = 697), 34% (N = 222) indicated to be dissatisfied with the information received. Multivariate linear regression analyses showed a significant positive association between satisfaction with information provision and global health (P = <0.001), emotional functioning (P = 0.004), social functioning (P = 0.027), physical functioning (P = 0.002) and role functioning (P = 0.001). Satisfaction was negatively associated with illness perception subscales on consequences (P = 0.020), timeline (P = 0.031), personal control (P = 0.013), treatment control (P < 0.001), illness concern (P < 0.001), coherence (P = 0.001) and emotional representation (P = 0.004). Hence, more satisfied patients reported fewer consequences of disease, illness concern and emotional representation, but higher personal and treatment control and coherence., Conclusions: A third of all prostate cancer survivors reported to be dissatisfied with the information received and scored worse on HRQoL and illness perception. A prospective randomized study is needed to study the effect of an intervention that improves information provision on HRQoL and illness perception outcomes. Copyright © 2015 John Wiley & Sons, Ltd., (Copyright © 2015 John Wiley & Sons, Ltd.)

Background: Allocation of inevitably limited financial resources for health care requires assessment of an intervention's effectiveness. Interventions likely affect quality of life (QOL) more broadly than is measurable with commonly used health-related QOL utility scales. In line with the World Health Organization's definition of health, a recent Delphi procedure showed that assessment needs to put more emphasis on mental and social dimensions., Objective: To identify the core dimensions of health-related subjective well-being (HR-SWB) for a new, more comprehensive outcome measure., Methods: We formulated items for each domain of an initial Delphi-based set of 21 domains of HR-SWB. We tested these items in a large sample (N = 1143) and used dimensionality analyses to find a smaller number of latent factors., Results: Exploratory factor analysis suggested a five-factor model, which explained 65% of the total variance. Factors related to physical independence, positive affect, negative affect, autonomy, and personal growth. Correlations between the factors ranged from 0.19 to 0.59. A closer inspection of the factors revealed an overlap between the newly identified core dimensions of HR-SWB and the validation scales, but the dimensions of HR-SWB also seemed to reflect additional aspects. This shows that the dimensions of HR-SWB we identified go beyond the existing health-related QOL instruments., Conclusions: We identified a set of five key dimensions to be included in a new, comprehensive measure of HR-SWB that reliably captures these dimensions and fills in the gaps of the existent measures used in economic evaluations., (Copyright © 2016 International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Published by Elsevier Inc. All rights reserved.)

Children with Autism Spectrum Disorders (ASDs) often experience a low Quality of Life (QoL). We studied if IQ, early language development, current autism traits, and daily Executive Functions (EFs) are related to QoL in children (aged 8-12 years) with ASD (N = 120) and typically developing (TD) children (N = 76). Children with ASD showed a lower QoL than TD children. This lower QoL was related to higher levels of autism traits and EF deficits. Moreover, specific autism traits and EFs were related to specific QoL subdomains. The low QoL and the aggravating effects of autism traits and EF deficits indicate a potential to identify and target such factors in treatment to improve QoL.

Purpose: Our key objective is to identify the core domains of health-related quality of life (QoL). Health-related QoL utility scales are commonly used in economic evaluations to assess the effectiveness of health-care interventions. However, health-care interventions are likely to affect QoL in a broader sense than is quantifiable with traditional scales. Therefore, measures need to go beyond these scales. Unfortunately, there is no consensus in the scientific literature on the essential domains of QoL., Methods: We conducted a three-stage online Delphi consensus procedure to identify the key domains of health-related QoL. Five stakeholder groups (i.e., patients, family of patients, clinicians, scientists and general public) were asked, on three consecutive occasions, what they perceive as the most important domains of health-related QoL. An analysis of existing (health-related) QoL and well-being measurements formed the basis of the Delphi-procedure., Results: In total, 42 domains of QoL were judged, covering physical, mental and social aspects. All participants rated 'self-acceptance', 'self-esteem' and 'good social contacts' as essential. Strikingly, mental and social domains are perceived as more essential than physical domains across stakeholders groups., Conclusions: In traditionally used health-related QoL utility measures, physical domains like 'mobility' are prominently present. The Delphi-procedure shows that health-related QoL (utility) scales need to put sufficient emphasis on mental and social domains to capture aspects of QoL that are essential to people.

Previously, a total of 121 children with an autism spectrum disorder (ASD) performed an adaptive working memory (WM)-training, an adaptive flexibility-training, or a non-adaptive control (mock)-training. Despite overall improvement, there were minor differences between the adaptive and mock-training conditions. Moreover, dropout was relatively high (26%). In the current study we explored potential predicting and moderating factors to clarify these findings. The effects of intelligence, autism traits, WM, flexibility, reward sensitivity and Theory of Mind on dropout, improvement during training, and improvement in everyday executive functioning (EF), ASD-like behavior, and Quality of Life (QoL) were studied. None of the predictors influenced dropout or training improvement. However, 1) more pre-training autism traits related to less improvement in EF and QoL, and 2) higher reward sensitivity was related to more improvement in QoL and ASD-like behavior. These findings suggest that these EF-training procedures may be beneficial for children with fewer autism traits and higher reward sensitivity. However, the exploratory nature of the analyses warrant further research before applying the findings clinically.

Background: People with autism spectrum disorders (ASDs) experience executive function (EF) deficits. There is an urgent need for effective interventions, but in spite of the increasing research focus on computerized cognitive training, this has not been studied in ASD. Hence, we investigated two EF training conditions in children with ASD. Methods: In a randomized controlled trial, children with ASD (n = 121, 8-12 years, IQ > 80) were randomly assigned to an adaptive working memory (WM) training, an adaptive cognitive flexibility-training, or a non-adaptive control training (mock-training). Braingame Brian, a computerized EF-training with game-elements, was used. Outcome measures (pretraining, post-training, and 6-week-follow-up) were near-transfer to trained EFs, far-transfer to other EFs (sustained attention and inhibition), and parent's ratings of daily life EFs, social behavior, attention deficit hyperactivity disorder (ADHD)-behavior, and quality of life. Results: Attrition-rate was 26%. Children in all conditions who completed the training improved in WM, cognitive flexibility, attention, and on parent's ratings, but not in inhibition. There were no significant differential intervention effects, although children in the WM condition showed a trend toward improvement on near-transfer WM and ADHD-behavior, and children in the cognitive flexibility condition showed a trend toward improvement on near-transfer flexibility. Conclusion: Although children in the WM condition tended to improve more in WM and ADHD-behavior, the lack of differential improvement on most outcome measures, the absence of a clear effect of the adaptive training compared to the mock-training, and the high attrition rate suggest that the training in its present form is probably not suitable for children with ASD.

An autism spectrum condition is considered a lifelong condition. Affected individuals typically experience poorer psychosocial outcomes compared to non-autistic individuals. However, in Southeast Asian countries such as Malaysia, research about autism spectrum conditions beyond the early childhood context is scarce, and therefore, the prevalence and psychosocial outcomes of young adults with autism spectrum conditions remain largely unknown. This study aims to explore self-reported autistic traits among university students in Malaysia, and their relation to emotion regulation, stress, self-efficacy and quality of life. Data from 2732 students revealed that 0.3% of the students reported having an autism spectrum condition diagnosis, while 2.5% reported that they suspected having an autism spectrum condition, but did not obtain a formal diagnosis. This indicates that an estimated 2.8% of students might have a diagnosed or suspected autism spectrum condition. These two categories of students were found to have poorer self-efficacy, higher perceived stress and poorer quality of life, as compared to their peers. However, these students were not significantly different from their peers in emotion regulation. Overall, the findings pointed to negative psychosocial outcomes associated with autism spectrum condition and culture-specific associations between autistic traits and psychosocial outcomes. Most research on autism spectrum conditions is done on young children and not as much on young adults with autism spectrum conditions. Because of this, not much is known about how common autism spectrum conditions are in young adults and how they affect their mental and social health, especially in Southeast Asia. Based on self-reports, 2.8% of the 2732 university students we looked at in Malaysia might have been diagnosed or thought to have an autism spectrum condition. Students who said they had or thought they had autism spectrum conditions had lower self-efficacy, more stress and a lower quality of life than students who said they did not have autism spectrum conditions. The results showed that university students with autism spectrum condition are more likely to have bad psychological and social outcomes than their peers without autism spectrum condition. Also, the link between autistic traits and psychosocial outcomes could depend on the culture. [ABSTRACT FROM AUTHOR]

Musical training likely has a positive impact on executive functions (EFs) and quality of life (QoL). Although enhanced musical ability has been observed in the autistic population, research suggests that autistic traits are associated with worse EF and QoL in both the general and autistic populations. It remains unclear whether autistic traits within the general population are related to better musical abilities, and how that might interact with their EF and QoL. The current study aimed to examine musical sophistication and its relationship with EF, QoL, and autistic traits. One hundred seventy (129 females; Mage = 20.5) university students completed the Goldsmiths Musical Sophistication Index, the Adult Executive Functioning Inventory, the Autism Spectrum Quotient, and the Pediatric Quality of Life Inventory General Core Scales for adults. Although no significant association was found between musical sophistication and autistic traits, musical sophistication was associated with fewer EF difficulties. Moreover, participants with more autistic traits and more EF difficulties tend to have a lower QoL. These effects remained significant after controlling for key demographic variables. EF mediates the effect of musical sophistication on QoL; greater musical sophistication is related to better EF and, in turn, better QoL. When looking into the subscales of the Goldsmiths Musical Sophistication Index, having fewer EF difficulties were linked to better Emotions, Musical Training, and Perceptual and Singing Abilities. Our results offer insights into how musical sophistication is related to EF, autistic traits, and QoL. [ABSTRACT FROM AUTHOR]

Objective: To investigate decision-making role preferences and their association with the evaluation of information received in a sample of low-risk and intermediate-risk prostate cancer (Pca) survivors.Methods: Cross-sectional study involved 562 men diagnosed with low-risk or intermediate-risk Pca (median time since diagnosis, 48mo), measuring preferred decision-making role (Control Preference Scale) and the evaluation of information received (EORTC QLQ-INFO25). Analyses were performed using analysis of variance, chi-square tests, and multivariable linear regression models.Results: Men who preferred a passive role were older and less educated than other preference groups and more often selected a noninvasive treatment option (all with P<0.001). The passive role preference group reported having received less information, judged the received information as less helpful, and indicated lower overall satisfaction with information received (all with P<0.05). Role preference groups did not differ in their desire to receive more information.Conclusion: Compared with nonpassive preference groups, the preference for a passive role in Pca treatment decision-making is associated with less satisfaction with the information received.Practice Implications: Assessment of role preferences and tailored information provision could improve satisfaction with information received and perhaps may ultimately lead to improved patient participation in treatment decision-making. [ABSTRACT FROM AUTHOR]