scholarly journals P121 The efficacy of treatment interventions on fatigue in adolescents with juvenile idiopathic arthritis: a literature review

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Sebastian Moshtael ◽  
Sonia Khanom ◽  
Janet E McDonagh
Keyword(s):  
Quality Of Life ◽  
Juvenile Idiopathic Arthritis ◽  
Young People ◽  
Rating Scale ◽  
Outcome Measure ◽  
Therapeutic Interventions ◽  
Current Evidence ◽  
Original Research ◽  
Qualitative Synthesis

Abstract Background/Aims  Fatigue has been reported by young people and professionals alike as a major challenge for people living with juvenile idiopathic arthritis (JIA) . It remains unclear as to how therapeutic interventions impacts on this major symptom. The aim of this review was to determine the current evidence for the effectiveness of therapeutic interventions, non- pharmacological and pharmacological, on improving fatigue in adolescents with JIA. Methods  Three electronic databases (MEDLINE, EMBASE, PsycINFO) were searched from 2000 to Feb 2020; in addition to manual searches. Articles were eligible for inclusion if they (i) were original research papers, (ii) had fatigue as a primary outcome measure (iii) included adolescents (10-25 years) and (iv) were available in the English language. Results  Of the 3,142 records identified, 31 underwent full text assessment and 4 studies were included in the qualitative synthesis including 2 from the Netherlands, 1 Germany, and 1 from Canada. The total number of participants across the 4 studies was 824. Three were randomised controlled trials of nonpharmacological interventions and one was a cohort study from a national drug registry including older adolescents JIA (mean: 19-years). Measurement tools included the Paediatric Quality of life multidimensional fatigue scale, (2 studies), the Checklist for Individual Strength CIS-20 (1 study), a numeric rating scale (1 study). In one study a visual analogue scale for energy level was also utilised. In 2 studies baseline prevalence of fatigue was reported as 60% and 76% respectively. Significant reduction in fatigue was observed in all three nonpharmacological studies. In the registry study, fatigue was noted to be prevalent in spite of the disease being in inactive or minimally active on biologic therapy. In 3 studies the relationship between health-related quality of life and fatigue was highlighted and showed a decreased quality of life in fatigued young people. Conclusion  Fatigue is a significant problem in JIA during adolescence and influences quality of life. Improvements in fatigue with non-pharmacological interventions have been reported. However, at present, data is insufficient to conclusively decide which treatment intervention is most efficacious in treating fatigue in young people with JIA. Fatigue should be considered as an important outcome measure for the management of JIA in future evaluations of interventions. Disclosure  S. Moshtael: None. S. Khanom: None. J.E. McDonagh: None.

scholarly journals Wartości preferowane przez młodzież studiującą i uczącą się a jej poczucie jakości życia

2021 ◽  
pp. 87-111
Author(s):  
Janusz Ślusarski ◽  
Keyword(s):  
Quality Of Life ◽  
Life Satisfaction ◽  
Young People ◽  
Perceived Quality ◽  
Original Research ◽  
Satisfaction Scale ◽  
Perceived Quality Of Life ◽  
Educational Processes ◽  
Polish Adaptation

The author of the article presents a description and interpretation of the results of original research carried out in groups of young people studying at university and secondary schools. The research concerned the values of these groups of young people and their perceived quality of life. In his research, the author uses the Shalom Schwartz’s Portrait Values Questionnaire (PVQ) in the Polish adaptation of J. Cieciuch and Z. Zaleski and the Life Satisfaction Scale by Diener et al. in the Polish adaptation of Juczyński. The results of the research are presented in the article and conclusions are formulated on this basis, which can be an interesting source of data for people who currently organize and implement the broadly understood educational processes in universities and high schools.

scholarly journals The Effects of Integrative In-Patient Treatment on Patients’ Quality of Life: A Meta-Analysis

2013 ◽  
Vol 2013 ◽  
pp. 1-6 ◽  
Author(s):  
Thomas Ostermann ◽  
Jost Langhorst ◽  
Andre-Michael Beer
Keyword(s):  
Quality Of Life ◽  
Outcome Measure ◽  
Meta Analysis ◽  
Random Effect ◽  
Relevant Information ◽  
Effect Sizes ◽  
Patient Treatment ◽  
Current Evidence ◽  
Sf 36

Background. In the last decades, several hospitals have adopted this concept of integrative medicine for the treatment of chronic and acute states of illnesses in in-patient treatment. The aim of this paper was to summarize the current evidence for a possible effectiveness of integrative on-patient treatment in patients’ quality of life by means of a meta-analysis.Material and Methods. The databases MEDLINE, EMBASE, AMED, PsycInfo, PsycLit CCMED, and CAMbase were screened to find articles. We also screened publisher databases to find relevant information. Articles were included if patients were treated in a hospital. To guarantee comparability SF-36 was the predefined outcome measure for patients’ quality of life. Data of pre/posteffects on the mental and physical scores of the SF-36 were extracted and effect sizes were calculated and entered into a random effect meta-analysis.Results. Eight articles published between 2003 and 2010 were included in the final meta-analysis. Random effect meta-analysis of the eight studies revealed an overall effect size of 0.37 (95% CI: [0.28; 0.45]) in the physical score and 0.38 (95% CI: [0.30; 0.45]) in the mental score of the SF-36.I2statistics indicate a high heterogeneity in the effects in both the physical and mental scores of the SF-36 (I2= 91.8%,P<0.001, resp.;I2= 86.7%,P<0.001).Discussion. This meta-analysis might help to rediscover the importance of integrative in-patient treatment for patients, physicians, and stakeholders.

To what extent does symptomatic improvement result in better outcome in psychotic illness?

1999 ◽  
Vol 29 (5) ◽  
pp. 1183-1195 ◽  
Author(s):  
J. VAN OS ◽  
C. GILVARRY ◽  
R. BALE ◽  
E. VAN HORN ◽  
T. TATTAN ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Service Use ◽  
Rating Scale ◽  
Diagnostic Category ◽  
Therapeutic Interventions ◽  
Psychotic Illness ◽  
Manic Symptoms ◽  
Needs For Care ◽  
Subjective Outcomes

Background. The effectiveness of therapeutic interventions in psychosis is increasingly reported in terms of reductions in different symptom dimensions. It remains unclear, however, to what degree such symptomatic changes are accompanied by improvement in other measures such as service use, quality of life, and needs for care.Methods. A sample of 708 patients with chronic psychotic illness was assessed on three occasions over 2 years (baseline, year 1 and year 2). A multilevel analysis was conducted to examine to what degree reduction in psychopathological scores derived from factor analysis of the Comprehensive Psychopathological Rating Scale (CPRS), was associated with improvement in service use, disability, subjective outcomes and measures of self-harm.Results. Reduction in positive, negative, depressive and manic symptoms over the study period were all independently associated with lessening of social disability. Reduction in negative symptoms, and to a lesser extent in positive and manic symptoms, was associated with less time in hospital and more time living independently, whereas changes in positive and manic symptoms resulted in fewer admissions. Subjective outcomes such as improvement in quality of life, perceived needs for care and dissatisfaction with services showed the strongest associations with reduction in depressive symptoms. Reduction in positive symptoms was associated with decreased likelihood of parasuicide. Results did not differ according to diagnostic category.Conclusion. The findings suggest that changes in distinct psychopathological dimensions independently and differentially influence outcome. Therapeutic interventions aimed at reducing symptoms of more than one dimension are likely to have more widespread effects.

scholarly journals Validation and Use of Quality of life Impact of Refractive Correction Questionnaire in Spectacle Wearers in Malawi: A clinic-based study

2020 ◽  
Vol 32 (2) ◽  
pp. 54-63
Author(s):  
Dinesh Kaphle
Keyword(s):  
Quality Of Life ◽  
Visual Acuity ◽  
Psychometric Properties ◽  
Refractive Error ◽  
Rating Scale ◽  
Outcome Measure ◽  
Scale Model ◽  
Separation Index ◽  
Culturally Adapted

Background To assess the psychometric properties of the QIRC questionnaire and use it as an outcome measure in spectacle wearers attending an eye clinic in Malawi. MethodsParticipants who had uncorrected distance visual acuity of below 6/18 and improved to 6/9 or better with spectacles on both eyes were included in the study. The participants self-administered the Chichewa version of the QIRC questionnaire that was translated and culturally adapted for Malawian settings. Psychometric evaluation of the QIRC responses was carried out using the WinSteps software (Version 3.92.1; Winsteps, Chicago, IL) by applying the Andrich rating scale model of the Rasch analysis.Results One hundred and forty-three participants (mean age ± standard deviation, 27.64 ± 2.91; age range; 16 to 39 years; male, 51.7%) completed the QIRC. The Chichewa QIRC had satisfactory psychometric properties (Ordered response categories, Person separation index, 1.93; Item separation index, 3.42; Targeting 0.70) including excellent Rasch-model fit statistics (Infit and Outfit MnSq < 1.30 for all items). The QIRC score was not significantly associated with sex, age, magnitude of refractive error, occupation and status of previous spectacle wear (p> 0.05 for all). The QIRC scores negatively correlated with uncorrected visual acuity (in logMAR) in the better eye (spearman’s rho=-0.34, p < 0.001).ConclusionsThe translated and culturally adapted version of the QIRC Questionnaire had satisfactory psychometric properties to measure the refractive error-specific quality of life in Malawi. It performed well as an outcome measure of spectacle wear. Key words: validation, quality of life, Rasch analysis, spectacles, Malawi

scholarly journals Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

2020 ◽  
Vol 34 (6) ◽  
pp. 731-775 ◽  
Author(s):  
Johanna Taylor ◽  
Alison Booth ◽  
Bryony Beresford ◽  
Bob Phillips ◽  
Kath Wright ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
Young People ◽  
Current Evidence ◽  
Children And Young People ◽  
Factors Affecting ◽  
Paediatric Palliative Care ◽  
The Impact

Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000–2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Results: An evidence base of mainly low- and moderate-quality studies ( n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children’s symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life.

Co-Design and Open Trial of Starship Rescue, a Cognitive Behavior Therapy, Biofeedback, and Game-Based eHealth Intervention to Treat Anxiety in Children and Young People with Long-Term Physical Conditions (Preprint)

2020 ◽  
Author(s):  
Hiran Thabrew ◽  
Karolina Stasiak ◽  
Harshali Kumar ◽  
Tarique Naseem ◽  
Christopher Frampton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
New Zealand ◽  
Young People ◽  
Preliminary Evidence ◽  
Children And Young People ◽  
Physical Conditions ◽  
System Usability Scale ◽  
Ehealth Intervention

BACKGROUND Approximately 10% to 12% of New Zealand children and young people have long-term physical conditions (also known as chronic illnesses) and are more likely to develop psychological problems, particularly anxiety and depression. Delayed treatment leads to worse physical and mental healthcare, school absence, and poorer long-term outcomes. Recently, electronic health (eHealth) interventions, especially those based on the principles of Cognitive Behavior Therapy (CBT), have been shown to be as good as face-to-face therapy. Biofeedback techniques have also been shown to enhance relaxation during the treatment of anxiety. However, these modalities have rarely been combined. Young people with long-term physical conditions have expressed a preference for well-designed and technologically-based support to deal with psychological issues, especially anxiety. OBJECTIVE This study aimed to co-design and evaluate the (i) acceptability and (ii) usability of a CBT and biofeedback-based, 5-module eHealth game called ‘Starship Rescue’ and (iii) to provide preliminary evidence regarding its effectiveness in addressing anxiety and quality of life in young people with long-term physical conditions. METHODS Starship Rescue was co-designed with children and young people from a tertiary hospital in Auckland, New Zealand. Following this, 24 young people aged 10 to 17 years were enrolled in an open trial, during which they were asked to use the game for an 8-week period. Acceptability of the game to all participants was assessed using a brief, open-ended questionnaire, and more detailed feedback was obtained from a subset of 10 participants via semi-structured interviews. Usability was evaluated via the System Usability Scale (SUS) and device-recorded frequency and duration of access on completion of the game. Anxiety levels were measured prior to commencement, on completion of the game, and 3 months later using the Generalized Anxiety Disorder 7-item scale (GAD-7) and Spence Child Anxiety Scales (SCAS), and at the start of each module and at the end of the game using an embedded Likert/visual analog scale. Quality of life was measured prior to commencement and on completion of the game using the Pediatric Quality of Life Scale (PEDS-QL). RESULTS Users gave Starship Rescue an overall rating of 5.9 out of 10 (range 3-10 and a mean score of 71 out of 100 (SD 11.7; min 47.5; max 90) on the System Usability Scale (SUS). The mean time period for use of the game was just over 11-weeks (78.8 days, 13.5 hours, 40 minutes). Significant reductions in anxiety were noted between the start and end of the game on the GAD-7 (-4.6 (p=0.000)), SCAS (-9.6 (p=0.005)), and the Likert/visual analogue scales (-2.4 (p=0.001)). Quality of life also improved on the PedsQL scale (+4.3 (p=0.042)). All changes were sustained at 3-month follow-up. CONCLUSIONS This study provides preliminary evidence for Starship Rescue being an acceptable, usable and effective eHealth intervention for addressing anxiety in young people with long-term physical conditions. Further evaluation is planned via a more formal randomized controlled trial. CLINICALTRIAL Australian New Zealand Clinical Trials Network Registry (ANZCTR): ACTRN12616001253493p;https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=371443 (Archived by WebCite at http://www.webcitation.org/6sYB716lf)

India as a Hub of Innovations for the Millions (I4M)

2018 ◽  
Author(s):  
Vijay Mahajan
Keyword(s):  
Quality Of Life ◽  
Young People ◽  
New Products ◽  
High Growth ◽  
Institutional Arrangements ◽  
Base Of The Pyramid ◽  
Large Economy ◽  
The World

This chapter deals with Indian ‘innovations for the millions’ (I4M)—new products, processes, and institutional arrangements—that sustainably improve the quality of life of those at the base of the pyramid. Taking ten examples which originated from the private, public, NGO and cooperative sectors, the chapter suggests that these innovations are a response of the ‘elite of calling’ to the Indian paradox – high growth in a large economy, co-existing with a very large number at the base of the pyramid. The chapter argues that a more supportive ecosystem needs to be built to foster I4M, including reforms in regulation and taxation, and attracting bright young people. If that happens Indian I4M can serve billions at the base of the pyramid around the world.

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