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Objective: Improved treatment landscape has led to better outcomes for paediatric acute lymphoblastic leukemia (ALL) survivors. As the number of survivors increase, we need to elucidate the long-term quality of life (QoL) and domains of complaints in these patients. Furthermore, the main priorities of these patients need to be clarified. We assessed long-term QoL outcomes of survivors of childhood ALL compared to matched population controls., Methods: QoL data were collected from survivors recruited in France and Belgium between 2012 and 2017, including the Short Form Health Survey (SF-12) and the Quality of Life Systemic Inventory (QLSI). The Wilcoxon test was used to compare SF-12 scale scores between survivors and matched population controls. For the QLSI, comparisons were mainly descriptive., Results: One hundred and eighty-six survivors (mean age: 27.6 years; range: 18.1-52.8) at follow-up completed QoL measures, amongst whom 180 were matched to controls. Overall, survivors had higher QoL on all SF12 scale scores, indicating that they had better functioning compared to controls. Statistically significant differences on the SF12 were observed for Vitality, Social Functioning, Role Limitations due to Emotional Problems and Mental Health scales. QLSI outcomes suggested that survivors were happier than controls with Couple and Social Relations. Controls were unhappiest compared to survivors with Money, Love life, Self-esteem, Nutrition and Paid Work., Conclusions: Our findings suggest that survivors of childhood ALL have better QoL outcomes on some domains compared to the general population, specifically around social and emotional functioning, and that they tend to prioritize their relationships more. Interventions for improving QoL outcomes, might build on existing positive experiences with family, friends and partners., (© 2022 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: Over the past 20 years, many researchers have worked in developing various methods for measuring quality of life (QoL) of people with dementia. The aim of this review is to develop the conceptual frameworks of the dementia-specific QoL instruments, to identify their evolution over time and to provide elements of reflection on the QoL concept in dementia and its evaluation., Methods: An electronic search was conducted on PsycINFO and MEDLINE databases, from January 1985 to June 2015 using a combination of key words that include QoL, dementia, and review., Results: The analysis of the conceptual frameworks of the 18 selected dementia-specific QoL tools shows a great diversity in: (1) the QoL definitions (e.g. health-related QoL definitions, QoL definitions based on Lawton's work, or similar to this latter); (2) the theoretical QoL models (e.g. Lawton' work and modified Lawton, adaptation, personhood); (3) the domains and dimensions; (4) the way to construct the instrument (e.g. development based on literature, opinion of the experts), and (5) the items' formulation (e.g. use of criterion of intensity or frequency)., Conclusions: There are different conceptual frameworks in the dementia-specific QoL measures with improvements over time (e.g. inclusion of interesting concepts such as adaptation, taking into account the views of patients themselves). Each of the conceptual parameters (definitions, models, domains, and dimensions) is discussed to identify the scales that are conceptually the strongest. Through their review, recommendations for future instrument refinement and development are discussed and a new QoL definition is proposed.

Integration of e-Health technologies for purposes of both assessment and intervention has recently become an interest area in pediatric psychology. The purpose of this study is to present psychometric characteristics of a technology-based (i.e., tablet administration) approach for measuring quality of life (QOL) in children. Eighty children (8-12 years) completed the Quality of Life Systemic Inventory for Children (QLSI-C) twice over a 2-week delay, in a crossover design that used paper and tablet-based modes of administration. Equivalence of scores across methods was examined using intraclass correlation coefficients (ICC), augmented by paired t test and Pearson's correlations. Test-retest reliability was assessed using paired t test and Pearson's correlations while internal consistency was assessed using Cronbach's coefficient. Results showed a good concordance across methods of administration (ICCs = .72 to .91; r = .56 to .83). Paired t test showed no significant differences between the tablet and paper version of the QLSI-C. Internal consistency reliability yielded acceptable Cronbach's alphas for all QLSI-C scores, with all α > .70. Test-retest reliability for the tablet-administered QLSI-C was good (r = .66 to .90). Paired t test showed no significant difference between Time 1 and 2 for the QLSI-C scores, except for the state score. Findings established the reliability of the tablet-administered QLSI-C scores. This technology approach to assessment is more attractive for children, decreases time for administration, and enhances the ease of scoring. These advantages might encourage both clinicians and researchers to consider using e-Health developments in assessment in pediatric psychology. (PsycINFO Database Record, ((c) 2016 APA, all rights reserved).)

This study assesses quality of life (Qol) in children with cancer history as well as Qol of their parents and examines the relationship between parental adjustment and children Qol. Two groups were formed: an experimental group composed by children with cancer antecedents and their parents and a control group with healthy children and their parents. Children have filled a questionnaire about their Qol. Parents have completed questionnaires about their coping, their illness perceptions, their parenting stress and their Qol. The results show that Qol was satisfactory and similar in both groups. Significant correlations were found between parental illness representations (threat and personal control) and children Qol as well as between coping strategies based on maintaining family cohesion and children Qol. This study highlights the need to assess the adjustment of parents after child cancer and to develop interventions targeting parental representations and coping strategies.

The aim of this descriptive study was to estimate and compare the association between cognitive decline and quality of life (QOL) for 2 groups of dementia patients differing by place of residence: home or institution. Each subject was placed within a specific subgroup according to their Mini-Mental State Examination (MMSE) score and was evaluated by a QOL proxy-assessment [Alzheimer Disease Related Quality of Life (ADRQL)] and a dependency assessment (Katz Activities of Daily Living classification). For the "at home" and "institution" groups, global and subscale ADRQL scores showed significant differences between the 5 MMSE subgroups. Place of residence and MMSE subgroups significantly affected global and subscale ADRQL scores. The MMSE 4 to 8, 9 to 13, and 14 to 18 subgroups had ADRQL global scores significantly better in the institution group than the at home group. In contrast, the MMSE 19 to 23 and 0 to 3 subgroups had similar ADRQL global scores in both places of residence. In conclusion, there is no direct relationship between cognitive decline and QOL, and QOL does not seem to be better at home compared with the institution.

Objectives: To assess the sensitivity of the 'Alzheimer's Disease Related Quality of Life' instrument (ADRQL) applied to Belgian people with dementia (n = 357), mild cognitive impairment (MCI) (n = 36), and controls (n = 72). We also determined the clinical parameters that influence the quality of life (QOL) of people with dementia., Method: Each subject was evaluated with the ADRQL, the Mini Mental State Examination (MMSE), the cognitive scale of the Cambridge Examination for Mental Disorders of the Elderly (CAMCOG), the Katz's ADL classification (ADL), the Instrumental Activities of Daily Living (IADL), the Behavior Rating Scale for Dementia (CERAD/BRSD), and the Clinical Dementia Rating/Modified (CDR-M)., Results: The ADRQL showed that QOL of the dementia group (65.77 +/- 17.04) was significantly inferior to that of the MCI (82.11 +/- 13.31) and control groups (79.75 +/- 15.82). There were no significant differences between the MCI and control groups. Within the dementia group, the five ADRQL subscale results were similar to those reported in other studies. Gender, age and place of residence had no significant influence on ADRQL scores. In contrast, ADRQL scores correlated significantly with MMSE, CAMCOG, IADL, ADL, CERAD/BRSD, and CDR-M. The MMSE and CERAD/BRSD were significant predictors of ADRQL variability., Conclusions: QOL of people with dementia is inferior to that of people with MCI and controls. This demonstrates the ADRQL instrument is sufficiently sensitive for evaluating the QOL of people with dementia. Longitudinal studies are needed to specifically examine the rate of QOL evolution throughout the entire dementia process., (Copyright (c) 2008 John Wiley & Sons, Ltd.)

Aims: We aimed to examine the association of cognitive decline with quality of life (QoL) in dementia compared to controls and to determine variables associated with QoL., Methods: Every subject was placed within a specific group depending on their designation by the Mini Mental State Examination and evaluated by the Alzheimer's Disease Related Quality of Life (ADRQL) and clinical assessments., Results: QoL for the mild dementia group was lower (p = 0.08) than that of controls. The very severe dementia group had a significantly lower QoL than the other dementia groups, which all had similar ADRQL scores. The only predictor of ADRQL scores was found to be the behavioral and psychological symptoms of dementia., Conclusion: There is no direct relationship between cognitive decline and QoL., ((c) 2008 S. Karger AG, Basel.)

Objectives: To examine the evolution of quality of life (QOL) in demented subjects at base-line, one and 2 years later and to determine clinical variables associated with QOL., Method: Longitudinal study of a cohort of 127 subjects living at home or in a long-term care institution. A QOL measure (Alzheimer Disease Related Quality of Life; ADRQL) was administered three times. In addition, several clinical instruments (MMSE, IADL, ADL and CDR/M) were also administered., Results: ADRQL data analysis did not reveal significant modifications of QOL over the 2-year period, whereas results from clinical instruments showed a significant deterioration. On the group, the variations of ADRQL scores were limited, with some improvement after the first year followed by some deterioration after the second year. On the other hand, ADRQL scores fluctuated every year by at least 10 points for more than 50% of subjects. With dementia evolution, it was observed that the clinical variables were more strongly correlated with ADRQL scores and were more significant predictors. This varied from 5.9% (MMSE) in 2002 to 40.01% in 2004 (MMSE and CDR/M)., Conclusions: QOL did not develop in a strictly linear manner following the deterioration of clinical state. This suggests that the evolution of QOL is also determined by other variables relating to the physical and social environment of the patients. Their role seems particularly important for the mild to moderate stages of dementia.

Abstract Aims Decision‐makers still predominantly focus on the perspective of non‐patient stakeholders, which may deviate from the unique perspective of heart failure (HF) patients. To enhance patient‐centred decision‐making, there is a need for more patient‐based evidence derived directly from the patients themselves. Hence, this study aimed to understand (i) HF patients' unmet medical needs and preferred treatment outcomes; (ii) patients' risk tolerance; and (iii) their information needs, uncertainties and satisfaction towards HF treatment. Methods This qualitative patient preference study consisted of a literature review with a systematic search strategy and semi‐structured interviews with HF patients, analysed using the framework method. During the interviews, patients were asked to rank a predefined list of disease and treatment‐related characteristics informed by the literature review and were able to spontaneously raise additional characteristics. Results The study included 14 Belgian HF patients (age range: 58–79, mean age: 72). (i) Regarding their unmet medical needs, HF patients reported that the most important unmet medical needs were shortness of breath and fatigue, as they negatively impact their quality of life (QoL) and independence. In the ranking exercise, patients prioritized improvements in QoL over improvements in life expectancy, whereby the following characteristics received the highest cumulative score: (1) independence, (2) shortness of breath, (3) impaired renal function, (4) survival, (5) fatigue, (6) risk of hospitalization and (7) communication with and between physicians. Patients most often spontaneously raise characteristics related to the general care process. Mechanism of action, route of administration, dose frequency and weight fluctuations scored among the least important characteristics. (ii) Regarding patients' risk tolerance towards HF treatment, some of the patients expressed zero tolerance for side effects, as they had not yet experienced any discomfort caused by the treatment or disease. (iii) Regarding their information needs, patients voiced their desire to receive practical and comprehensible advice orally from their physician because they highly value individualized treatment decision‐making. Patients also expressed uncertainties regarding whether the experienced effects were due to their treatment, disease, ageing or other comorbidities. Conclusions This study shows that, besides increasing life expectancy, HF patients prioritize improvements in symptoms and side effects reducing their QoL and independence, such as shortness of breath and fatigue. The patient‐relevant characteristics identified in this study, from the perspective of HF patients themselves, may be useful to inform clinical trial endpoint selection and guide downstream drug development, evaluation and clinical decision‐making towards addressing the unmet medical needs and treatment outcomes of importance to HF patients.

The objective was to determine the interest and psychometric properties of a new QOL self-assessment questionnaire suitable for children 8-12 years old measuring alpha, beta and gamma changes: the "Inventaire Systemique de Qualite de vie pour Enfants" (ISQV-E[C]). This was a cross-sectional validation study. 288 children have completed the ISQV-E. Other tools were used: The "Autoquestionnaire de Qualite de Vie Enfants Image" (AUQUEI), the State-Trait Anxiety Inventory for Children (STAIC), the Children's Depression Inventory (CDI). The internal consistency of the four scores of the ISQV-E (state, goal, rank and gap) is satisfactory. All scores have their own specificity. The data show the convergent validity, sensitivity and applicability of the ISQV-E. On the other hand, no satisfactory factorial structure was found although a multidimensional theoretical perspective was applied. The feasibility of the ISQV-E seems clearly demonstrated and the value of this new tool seems evident in contexts of physical, psychological or social problems. The validation study was promising but certain points such as test-retest reliability remain to be studied.

Abstract: Purpose: An essential goal of health care interventions is to promote quality of life. In line with recent biopsychosocial frameworks emphasizing individual and contextual resources for improving quality of life, the present prospective study aimed at identifying potential determinants of quality of life in a large sample of adolescents with congenital heart disease (CHD). In doing so, the present study focused on parental support, peer support, and sense of coherence (SOC), all representing key psychosocial constructs in adolescence. Methods: Adolescents with CHD (n at time 1 = 429; 46.6% girls) were assessed twice over a period of 9 months. Cross-lagged analysis from a structural equation modeling approach was used to examine the direction of effects among the study variables, simultaneously controlling for demographic and clinical parameters. Results: Important temporal sequences and developmental pathways were uncovered over time. Perceived health status, SOC, and parental support positively predicted quality of life over time; parental support was also found to positively predict SOC over time. Hence, parental support predicted both directly and indirectly (i.e., through SOC) quality of life over time. Finally, both perceived health status and SOC predicted peer support over time. Conclusions: The present longitudinal study using a large sample of adolescents with a wide spectrum of congenital heart defects substantially extended our knowledge base on biopsychosocial functioning and quality of life in this population. Both individual and contextual resources need to be taken into account to shed a comprehensive picture of quality of life in adolescents with CHD. [Copyright &y& Elsevier]