Psychiatric morbidity, functioning and quality of life in young people at clinical high risk for psychosis

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)

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

10.1093/oso/9780199476084.003.0008 ◽

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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Determinants of participation and quality of life of young adults with cerebral palsy: longitudinal approach and comparison with the general population – SPARCLE 3 study protocol

BMC Neurology ◽

10.1186/s12883-021-02263-z ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Catherine Arnaud ◽

Carine Duffaut ◽

Jérôme Fauconnier ◽

Silke Schmidt ◽

Kate Himmelmann ◽

...

Keyword(s):

Quality Of Life ◽

Young Adults ◽

Cerebral Palsy ◽

Young People ◽

General Population ◽

Transition Period ◽

Well Being ◽

Personal Factors ◽

The Impact

Abstract Background Effective inclusion in society for young people with disabilities is increasingly seen as generating opportunities for self-development, and improving well-being. However, significant barriers remain in the vast majority of activities meaningful for young adults. Research argues that various personal (disabilities, health) and environmental (access to the resources needed, accessible environment, discrimination, lack of personal economic independence) factors contribute to limited participation. However, previous studies conducted in young people with cerebral palsy (CP) mainly investigated the transition period to adulthood, and did not fully consider the whole range of impairment severity profiles or environmental barriers. In this study, we will use the follow-up of the SPARCLE cohort and a comparison group from the general population (1) to investigate the impact of the environment on participation and quality of life of young adults with CP, (2) to determine predictors of a successful young adulthood in educational, professional, health and social fields, (3) to compare quality of life and frequency of participation in social, work and recreational activities with the general population, (4) to document on participation and quality of life in those with severe disabilities. Methods The SPARCLE3 study has a combined longitudinal and cross-sectional design. Young adults with CP aged 22 to 27 years in 6 European regions previously enrolled in the SPARCLE cohort or newly recruited will be invited to self-complete a comprehensive set of questionnaires exploring participation (daily life and discretionary activities), health-related quality of life, body function, personal factors (health, personal resources), and contextual factors (availability of needed environmental items, family environment, services provision) during home visits supervised by trained researchers. Proxy-reports or adapted questionnaires will be used for those with the most severe impairments. The recruitment of a large group from the general population (online survey) will enable to identify life areas where the discrepancies between young people with CP and their able-bodied peers are the most significant. Discussion This study will help identify to what extent disabilities and barriers in environment negatively affect participation and quality of life, and how previous valued experiences during childhood or adolescence might modulate these effects.

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Formerly Detained Adolescents’ Narratives: On the Interplay between Quality of Life and Desistance

International Journal of Offender Therapy and Comparative Criminology ◽

10.1177/0306624x211023922 ◽

2021 ◽

pp. 0306624X2110239

Author(s):

Nele Van Hecke ◽

Florien Meulewaeter ◽

Wouter Vanderplasschen ◽

Lore Van Damme ◽

Jan Naert ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Young People ◽

Good Life ◽

Individual Responsibility ◽

Barriers And Opportunities ◽

Ambivalent Relationship ◽

Desistance From Crime ◽

Good Lives

In recent years, a growing trend to consider strengths and protective factors in studies on desistance from crime has emerged. The present study explores three formerly detained adolescents’ narratives, aiming to tease out how Quality of Life (QoL) and desistance interact in pathways towards a “better life.” The narratives suggest that the journey towards a better life is highly individual, and may unfold via multiple pathways characterized by an ambivalent relationship between QoL and desistance. Alongside the importance of individual aspects and social support, societal barriers and opportunities play a significant role in creating new chances to re-build a life and prosocial identities. This reflects earlier findings that desistance is not an individual responsibility. It is essential to support young people to overcome societal barriers that impede participation in society and living a good life. This research adds to growing evidence of strengths-based approaches to rehabilitation, such as the Good Lives Model (GLM).

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Psychiatric morbidity, Stress and Quality of Life Among Geriatric Dermatology Patients: Therapeutic Considerations from an Indian Perspective

Dermatologic Therapy ◽

10.1111/dth.15018 ◽

2021 ◽

Author(s):

Archana Anandakumar Geetha ◽

Ettappurath N. Abdul Latheef ◽

Sreekanth Sukumarakurup ◽

Keerankulangara Devi ◽

Mohammad Jafferany

Keyword(s):

Quality Of Life ◽

Psychiatric Morbidity ◽

Geriatric Dermatology ◽

Therapeutic Considerations ◽

Indian Perspective

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

Rheumatology ◽

10.1093/rheumatology/keab247.117 ◽

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.

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Longitudinal cohort study of the impact of specialist cancer services for teenagers and young adults on quality of life: outcomes from the BRIGHTLIGHT study

BMJ Open ◽

10.1136/bmjopen-2020-038471 ◽

2020 ◽

Vol 10 (11) ◽

pp. e038471

Author(s):

Rachel M Taylor ◽

Lorna A Fern ◽

Julie Barber ◽

Javier Alvarez-Galvez ◽

Richard Feltbower ◽

...

Keyword(s):

Quality Of Life ◽

Young Adults ◽

Cohort Study ◽

Young People ◽

Longitudinal Cohort Study ◽

Longitudinal Cohort ◽

Cancer Services ◽

Teenagers And Young Adults ◽

Over Time

ObjectivesIn England, healthcare policy advocates specialised age-appropriate services for teenagers and young adults (TYA), those aged 13 to 24 years at diagnosis. Specialist Principal Treatment Centres (PTC) provide enhanced TYA age-specific care, although many still receive care in adult or children’s cancer services. We present the first prospective structured analysis of quality of life (QOL) associated with the amount of care received in a TYA-PTCDesignLongitudinal cohort study.SettingHospitals delivering inpatient cancer care in England.Participants1114 young people aged 13 to 24 years newly diagnosed with cancer.InterventionExposure to the TYA-PTC defined as patients receiving NO-TYA-PTC care with those receiving ALL-TYA-PTC and SOME-TYA-PTC care.Primary outcomeQuality of life measured at five time points: 6, 12, 18, 24 and 36 months after diagnosis.ResultsGroup mean total QOL improved over time for all patients, but for those receiving NO-TYA-PTC was an average of 5.63 points higher (95% CI 2.77 to 8.49) than in young people receiving SOME-TYA-PTC care, and 4·17 points higher (95% CI 1.07 to 7.28) compared with ALL-TYA-PTC care. Differences were greatest 6 months after diagnosis, reduced over time and did not meet the 8-point level that is proposed to be clinically significant. Young people receiving NO-TYA-PTC care were more likely to have been offered a choice of place of care, be older, from more deprived areas, in work and have less severe disease. However, analyses adjusting for confounding factors did not explain the differences between TYA groups.ConclusionsReceipt of some or all care in a TYA-PTC was associated with lower QOL shortly after cancer diagnosis. The NO-TYA-PTC group had higher QOL 3 years after diagnosis, however those receiving all or some care in a TYA-PTC experienced more rapid QOL improvements. Receipt of some care in a TYA-PTC requires further study.

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Quality of life and risk of feminicide in women victims of intimate partner violence in Campinas

European Journal of Public Health ◽

10.1093/eurpub/ckaa165.1115 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

M Caicedo Roa ◽

L Gabrielle Dalaqua ◽

P Filizola ◽

R Cordeiro

Keyword(s):

Quality Of Life ◽

Domestic Violence ◽

Intimate Partner Violence ◽

High Risk ◽

Women Victims ◽

Partner Violence ◽

Public Health Problem ◽

Intimate Partner ◽

Increased Risk

Abstract Introduction Violence against women is a public health problem with severe consequences. Most women in situations of domestic violence are emotionally involved and/or economically dependent of their intimate partners contributing to the perpetuation and acceptance of violence. Objectives 1) To characterize the women who join the Reference and Support Center for Women (Ceamo) in Campinas, Southeast Brazil. 2) To measure the quality of life in women victims of intimate partner violence 3) To determine the risk of feminicide. Methods The Ceamo is a public specialized service from the mayor of Campinas, it provides psychological, social and legal guidance to women in situations of gender violence. Inclusion criteria: Women attending Ceamo services, speaking Portuguese, age ≥18 years old and having experienced intimate partner violence. Measure instruments: Danger assessment Scale and WHOQOL-BREF. Results During the 11 months of the study, 78 new users were recruited. Average age 38.3 years old, mostly married/stable union, most of them with children (88%). 64% of women do not work and 36% live with the abusive partner. Prevalent types of violence suffered during by the victims in the last year were psychological n = 76, physical n = 62, moral n = 54 and sexual n = 23. The domain most affected in the assessment of quality of life was the environment (average 42% /100%) and psychological domain (42%/100%). 49% of women were classified with increased risk, 22% with severe risk and 1% with extreme risk of femicide. The questions with the most positive answers were those related to believing that the partner can kill her (77%), jealous of the partner (76%) and controlling behavior (73%), being followed/spied by the partner (67%) and threat death (65%). Conclusions The service in general receive very vulnerable women with low perception of their own quality of life, precarious material conditions and high risk of femicide. Key messages The women in domestic violence situation attended by the Ceamo service are at high risk of femicide. Service users have very low perception of their quality of life and poor social conditions.

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Impact of monthly headache days on anxiety, depression and disability in migraine patients: results from the Spanish Atlas

Scientific Reports ◽

10.1038/s41598-021-87352-2 ◽

2021 ◽

Vol 11 (1) ◽

Author(s):

P. Irimia ◽

M. Garrido-Cumbrera ◽

S. Santos-Lasaosa ◽

M. Aguirre-Vazquez ◽

J. Correa-Fernández ◽

...

Keyword(s):

Quality Of Life ◽

High Risk ◽

Psychiatric Comorbidity ◽

Severe Disability ◽

Anxiety And Depression ◽

Headache Frequency ◽

Positive Linear Correlation ◽

Disabled Patients ◽

Anxiety Depression

AbstractIdentifying highly disabled patients or at high risk of psychiatric comorbidity is crucial for migraine management. The burden of migraine increases with headache frequency, but the number of headache days (HDs) per month after which disability becomes severe or the risk of anxiety and depression is higher has not been established. Here, we estimate the number of HDs per month after which migraine is associated with higher risk of anxiety and depression, severe disability and lower quality of life. We analysed 468 migraine patients (mean age 36.8 ± 10.7; 90.2% female), of whom 38.5% had ≥ 15 HDs per month. Our results show a positive linear correlation between the number of HDs per month and the risk of anxiety (r = 0.273; p < 0.001), depression (r = 0.337; p < 0.001) and severe disability (r = 0.519; p < 0.001). The risk of anxiety is higher in patients having ≥ 3HDs per month, and those with ≥ 19HDs per month are at risk of depression. Moreover, patients suffering ≥ 10HDs per month have very severe disability. Our results suggest that migraine patients with ≥ 10HDs per month are very disabled and also that those with ≥ 3HDs per month should be screened for anxiety.

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