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3176 to 3200 of 6,178Qualitative differences in perspective on children's quality of life between children with cerebral palsy and their parents.
Background: Cerebral palsy (CP) is one of the most common childhood disabilities, impacting many areas of a child's life. Increasingly, quality of life (QOL) measures are used to capture holistic wellbeing of children with CP. However most validated QOL measures for children are based on adult perspective only, with limited focus on child perspective. Conceptual differences between children's and adults' definitions of QOL may reflect different underlying QOL models which contribute to measurement score divergence. This qualitative study investigated the conceptual meaning of QOL for children with CP, comparing child and parent perspectives. Eighteen families completed 8 child interviews and 18 parent interviews. Children (11 boys, 7 girls) represented the spectrum of motor functioning, with comorbidities including epilepsy, intellectual disability, and communication impairments. Child a…
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Deacon RM, Mills L, Bruno R, Mammen K, Dunlop A, Childs S, Shakeshaft A, Holmes J, Lintzeris N (2023)MEDLINE-indexed journal, not yet read by usAddiction (Abingdon, England)1 citations Identifying thresholds for clinically meaningful change among clients of drug and alcohol services using the Australian Treatment Outcomes Profile.
Aims: The Austraian Treatment Outcomes Profile (ATOP) is a brief clinical outcomes tool used widely in the Australian alcohol and other drugs treatment sector to monitor clients' substance use, health, wellbeing and clinical risk factors. It has demonstrated reliability and validity, and has recommended clinical cut-offs for assessing single-occasion client-rated health scores. This study determined clinically meaningful change thresholds for ATOP substance use and health and wellbeing variables for use by clinicians in monitoring client progress, and for quality improvement and service evaluation.
Design, setting and participants: A framework for assessing clinically meaningful changes scores was developed by (1) calculating statistically reliable change thresholds using data-driven techniques with a reference sample of clinical ATOP data and (2) conducting a multi-disciplinary subject …
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Ding N, Zhang X (2022)MEDLINE-indexed journal, not yet read by usInternational journal of environmental research and public health11 citations Bullying Victimization and Quality of Life among Chinese Adolescents: An Integrative Analysis of Internet Addiction and Social Withdrawal.
Bullying victimization has been proven to be a direct predictor of adolescents' quality of life, whereas elaborate mechanisms remain inconclusive. This study aims to explore the mediating pathway of Internet addiction and social withdrawal on the relationship between bullying victimization and quality of life among Chinese adolescents. This study used the cross-sectional data collected by self-reported questionnaires, including multidimensional peer-victimization scale, youth quality of life instrument-short form, prolonged social withdrawal questionnaire, and compulsive Internet use scale. A total of 1278 participants from four junior middle schools and two high schools participated in the questionnaire survey. SPSS 25.0 and Amos 25.0 were adopted to analyze the data. The results indicated that bullying victimization was directly and indirectly associated with adolescents' quality of li…
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Health and Quality of Life Outcomes of Driving Cessation for Older People are More Complex Than We Thought.
Objectives: This study examined whether there are meaningful subgroups of older past drivers who experience better health and quality of life outcomes, and the factors that may contribute to such outcomes.
Methods: Data from 127 people aged 56-89 years who were past drivers in a New Zealand longitudinal study of aging was used in cluster analysis.
Results: Older past drivers experienced a range of outcomes regarding health and quality of life following driving cessation that clustered into five subgroups, ranging from people with robust outcomes to those with vulnerable health and quality of life. The subgroups were distinguished by economic position, social support, and volunteering.
Conclusions: Using methodology to address issues associated with use of aggregated data, there were subgroups of older past drivers who had better health and wellbeing outcomes following driving cessation t…
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Infertility-related stress and quality of life in women experiencing concurrent reproductive trauma.
Purpose: To compare differences in infertility-related stress and quality of life (QOL) among women with infertility and concurrent reproductive trauma, defined as pregnancy loss during the infertility experience.
Materials and methods: We used a descriptive, cross-sectional study design to recruit 205 women who underwent infertility treatments from infertility-related Facebook support groups and pages. Participants completed the Copenhagen Multi-center Psychosocial Infertility Fertility Problem Stress Scale, the Fertility Quality of Life tool, and a supplemental infertility demographic form. Statistical analyses included descriptive statistics, Pearson correlations, multivariate analysis of variance (MANOVA), univariate ANOVA, and eta squared. Statistical significance was evaluated using a Bonferroni adjusted alpha = .05/7 = .007.
Results: Participants with concurrent reproductive traum…
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How to improve the long-term quality of life, insomnia, and depression of survivors 10 years after the Wenchuan earthquake? A network analysis.
Background: Previous studies have found a negative effect of depression and insomnia on the psychological health domain of quality of life (QOL) among earthquake survivors. However, little is known about the symptom-to-symptom interactions among the above psychological outcomes. This study thus aimed to assess the interplay among the above three variables in survivors 10 years after the Wenchuan earthquake at the symptom level.
Methods: A total of 744 survivors completed the questionnaire at 10 years post-earthquake, reporting depressive symptoms, insomnia symptoms, and the psychological health domain of QOL. All network structures were estimated and compared using the network analysis approach in R version 4.1.1.
Results: Among the 744 survivors, 593 individuals did not have significant depressive and insomnia symptoms, while 151 individuals reported depressive and/or insomnia symptoms.…
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Quality of life among survivors of adolescent and young adult cancer in Canada: A Young Adults With Cancer in Their Prime (YACPRIME) study.
Background: The quality of life (QoL) among survivors of adolescent and young adult (AYA) cancer may be compromised compared with that in the general population. In this study, the authors: 1) assessed for differences in QoL among a national study of AYA cancer survivors compared with the Canadian population and 2) explored the factors associated with poorer QoL in AYA cancer survivors.
Methods: For the current research, data from the Young Adults With Cancer in Their Prime study were used. QoL was measured using physical and mental component scores from a 12-item short-form health status measure. A comparison group was derived from the Canadian Community Health Survey.
Results: AYAs (n = 195; 17.8% male; mean ± SD: 35.62 ± 6.89 years on study, 6.48 ± 5.73 years from treatment) were compared with a comparison sample (n = 665; 21.2% male). Among survivors, 31.8% reported poor physical hea…
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Illness perception, coping, and quality of life in early-stage Mycosis fungoides.
Background: Mycosis fungoides is the most common type of cutaneous T-cell lymphoma. Most early-stage mycosis fungoides cases follow an indolent course, hence considered by doctors a relatively easy condition. However, since mycosis fungoides bears the title of cancer, patients might perceive it differently.
Objective: To investigate patients' illness perception, and its relationships to quality of life, depression, anxiety, and coping among early-stage mycosis fungoides patients.
Methods: A cross-sectional questionnaire-based study was conducted. Patients from a single tertiary medical center completed the Revised Illness Perception Questionnaire, the MF/SS-CTCL Quality of Life scale, the Hospital Anxiety and Depression Scale, and The Mental Adjustment to Cancer Scale.
Results: Thirty patients (25 males, five females, mean age 51.60) with stage I mycosis fungoides were enrolled. Mycosis …
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Relationship of social support and health-related quality of life among migrant older adults: The mediating role of psychological resilience.
Migrant older adults are influenced by an accumulation of aging and adversities related to migration. This study aimed to evaluate the effects of psychological resilience and social support on health-related quality of life (HRQOL) among migrant older adults, and examine the mediating effect of psychological resilience between social support and HRQOL. A total of 149 migrant older adults were recruited from five communities in Chongqing, China. Social support and psychological resilience were positively associated with physical and mental HRQOL among migrant older adults. Psychological resilience had a partial mediating effect on the relationship between social support and physical and mental HRQOL. These findings provide a better understanding of how social support and psychological resilience work together to affect HRQOL, and it could guide the interventions to promote HRQOL among mig…
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Quality of life, self-compassion and mindfulness in cancer patients undergoing chemotherapy: A cross-sectional study.
Purpose: We investigated whether self-compassion and mindfulness are associated with quality of life in patients undergoing antineoplastic chemotherapy.
Methods: A cross-sectional survey of 183 patients (100% response rate) undergoing chemotherapy was conducted at a Brazilian hospital between August and December 2019. A questionnaire was administered by the research team, collecting clinical and demographic data as well as responses to the Self-compassion scale, Mindful Attention Awareness Scale, and the Functional Assessment of Cancer Therapy-General instrument. Data analysis comprised descriptive and inferential statistics, with multiple regression and Spearman's rank-order correlation testing for associations between quality of life, self-compassion and mindfulness.
Results: Mean scores for the study variables were 4.23 (SD = 0.63) for self-compassion, 69.05 (SD = 13.27) for mindfulne…
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Long-term surgical and patient-reported outcomes of Hirschsprung Disease.
Background: Information is needed regarding the complex relationships between long-term functional outcomes and health-related quality of life (HRQoL) in Hirschsprung's Disease (HSCR). We describe long-term outcomes across multiple domains, completing a core outcome set through to adulthood.
Methods: HSCR patients operated at a single center over a 35-year period (1978-2013) were studied. Patients completed detailed questionnaires on bowel and urologic function, and HRQOL. Patients with learning disability (LD) were excluded. Outcomes were compared to normative data. Data are reported as median [IQR] or mean (SD).
Results: 186 patients (median age 28 [18-32] years; 135 males) completed surveys. Bowel function was reduced (BFS 17 [14-19] vs. 19 [19-20], p < 0•0001;η2 = 0•22). Prevalence and severity of fecal soiling and fecal awareness improved with age (p < 0•05 for both). Urinary incont…
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The Etiology of Infertility Affects Fertility Quality of Life of Males Undergoing Fertility Workup and Treatment.
This panel study explored the effects of male, female, mixed, or idiopathic factor of infertility on the fertility quality of life (FertiQoL) in involuntarily childless males undergoing fertility workup for the first time. A convenience sample of 255 married males (age range = 22-51 years, mean = 30.24 years), 254 (99.6%) of whom suffered from primary infertility were assessed (1) at the baseline, before their initial fertility evaluation (T1); (2) before their second andrological appointment, 2-3 months after diagnostic disclosure (T2); and (3) before subsequent treatment-related/ follow-up appointments (T3, T4). The timing of psychological assessment was strictly related to andrological appointments and routine medical procedures. Respondents completed Emotional, Mind-Body, Relational, and Social subscales of the Polish version of FertiQoL and a baseline demographic survey. The researc…
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Vanier A, Oort FJ, McClimans L, Ow N, Gulek BG, Böhnke JR, Sprangers M, Sébille V, Mayo N, Response Shift - in Sync Working Group (2021)MEDLINE-indexed journal, not yet read by usQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation100 citations Response shift in patient-reported outcomes: definition, theory, and a revised model.
Purpose: The extant response shift definitions and theoretical response shift models, while helpful, also introduce predicaments and theoretical debates continue. To address these predicaments and stimulate empirical research, we propose a more specific formal definition of response shift and a revised theoretical model.
Methods: This work is an international collaborative effort and involved a critical assessment of the literature.
Results: Three main predicaments were identified. First, the formal definitions of response shift need further specification and clarification. Second, previous models were focused on explaining change in the construct intended to be measured rather than explaining the construct at multiple time points and neglected the importance of using at least two time points to investigate response shift. Third, extant models do not explicitly distinguish the measure fr…
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Quality of Life Changes during the COVID-19 Pandemic for Caregivers of Children with ADHD and/or ASD.
The COVID-19 pandemic has presented many challenges to caregivers of children. Families with children with attention-deficit/hyperactivity disorder (ADHD) and/or autism spectrum disorder (ASD) are an understudied but potentially vulnerable population to changes during the outbreak. As such, the aim of this study was to contrast quality of life for caregivers of children with ADHD and/or ASD, before and during the pandemic, compared to caregivers of neurotypical (NT) children. Total, Parent Health-Related Quality of Life, and Family Functioning Summary Scores from the Family Impact Module of the Pediatric Quality of Life InventoryTM were contrasted among caregivers of children with ADHD, ASD, comorbid ADHD and ASD, and NT development. For all scores, caregivers of ADHD and/or ASD children reported lower quality of life, both before and during the pandemic, in comparison to caregivers of N…
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Living with Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) syndrome: a case study of healthcare experiences and quality of life.
Aim: Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome is a rare condition with an estimated prevalence rate of 0.3 per 100,000 people. Patient perspectives on healthcare experiences and quality of life have not yet been studied in depth. This novel study aimed to explore one person's lived experience of Polyneuropathy Organomegaly Endocrinopathy Monoclonal gammopathy Skin changes (POEMS) Syndrome, taking into consideration healthcare experiences in relation to diagnosis and treatment.
Method: A mixed-method design was used; one participant completed a semi-structured interview and three self-report measures: Hospital Anxiety and Depression Scale; World Health Organisation Quality of Life Scale (brief); Brief Illness Perception Questionnaire.
Results: Three qualitative themes appeared to influence the participant's healthcare experiences and q…
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Impact of the COVID-19 Pandemic on the Lifestyles and Quality of Life of Women With Fertility Problems: A Cross-Sectional Study.
Background: The COVID-19 pandemic has implied worldwide the imposition of confinement measures and mobility restrictions, to a greater or lesser extent. It has also meant the closure of some public medical services such as reproductive care. This situation may have impacted the health-related behaviour and quality of life of women with fertility problems. Objective: The objective of this study was to analyse the effects of confinement and the suspension of reproductive medical care on the lifestyle (diet, physical exercise, and smoking habits), anxiety and depression, and quality of life of infertile women by comparing their pre- and post-confinement situations. Methods: We carried out a cross-sectional, internet-based study. Information was collected on these women's adherence to the Mediterranean diet (MEDAS questionnaire), physical exercise (IPAQ-SF), anxiety and depression (HADS), an…
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Effectiveness of a community-based integrated service model for older adults living alone: A nonrandomized prospective study.
Objective: Older adults living alone face physical, emotional, and social health problems, and prefer to age in place (AIP) in their homes. A community-based integrated model for AIP is needed and few studies have identified its impact on older adults living alone.
Methods: This was a non-randomized prospective study. Participants were 877 community-dwelling older adults living alone, aged above 65 years, in S* city in South Korea. The intervention group (n = 331) received a community-based integrated service (CBIS) model based on AIP for six months from October 2019 to April 2020.
Results: Scores on frailty (β = -0.377, p < .001), loneliness (β = -1.897, p = .018), and health-related quality of life (β = 4.299, p = .021) significantly improved in the intervention group. Among the intervention group, loneliness scores significantly improved among participants aged under 80 years than tho…
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Quality of life under the COVID-19 quarantine.
Background: COVID-19 has spread rapidly throughout the world, causing thousands of illnesses and deaths. To fight this pandemic, almost all governments and health authorities have focused on prevention. In March or April, most countries' officials imposed home quarantine and lockdown measures nationwide.
Purpose: This study sought to assess health-related quality of life (HRQoL) and anxiety levels among people in Portugal under mandatory home quarantine due to the COVID-19 pandemic. The results were compared to the general Portuguese population's HRQoL before the COVID-19 outbreak. This research also aimed to understand the factors that can influence the respondents' HRQoL.
Methods: A sample of Portugal's population quarantined at home (n = 904) filled in an online survey comprising the Generalized Anxiety Disorder 7-item and the EQ-5D-5L and other questions about sociodemographic charac…
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Change in quality of life over eight years in a nationally representative sample of US adults with heart disease and type 2 diabetes:minority race and toxic stress as keysocial determinants.
Background: Toxic stress (TS), minority race and their interaction are evaluated as determinants of change in quality of life (QOL) over 8 years follow-up in a nationally representative sample of United States (US) adults (≥50 years old) with heart disease (HD) and/or type-2 diabetes (T2DM) diagnosed by 2006 as part of the Health and Retirement Study (HRS).
Methods: Recent and life-course stress plus experiences of lifetime discrimination were measured every 2 years using the stressful life experiences questionnaire. QOL was assessed by participant self-rated health (SRH) and operationally defined as improved, unchanged or declined in current year versus two years prior. Repeated measures multinomial logistic regressionusing generalized estimating equations (GEEs) was implemented to estimate race-, TS and their interaction- related odds of worse SRH from2006-2014. Odds ratios (OR) and 95…
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"Just one of the guys" An application of the Occupational Wellbeing framework to graduates of a Men's Shed Program for young unemployed adult males with intellectual disability.
Introduction: Conceptualisation of occupation requires understanding of subjective wellbeing and experiences of occupation. Opportunities for participation in productivity activities, such as employment, may be limited for people with intellectual disability (ID). An occupational wellbeing framework was recently re-imagined to focus on the subjective meaning of a person's occupational life rather than occupational performance. This study analysed experiences and possible benefits to occupational wellbeing of young adult men with ID in an intergenerational mentoring program based on Australian Men's Sheds using this revised occupational wellbeing framework.
Methods: A qualitative approach was used to gather individual semi-structured interviews at the end of an intergenerational mentoring program to explore occupational wellbeing experiences. Eight individual mentees and five parents of m…
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Socioeconomic status, social support, oral health beliefs, psychosocial factors, health behaviours and health-related quality of life in adolescents.
Purpose: This study assessed the relationships between socioecononic status (SES), social support, oral health beliefs, psychosocial factors, health-related behaviours and health-related quality of life (HRQoL) in adolescents.
Methods: A school-based follow-up study involving 376 12-year-old adolescents was conducted in Manaus, Brazil. Baseline data included sociodemographic characteristics (sex, parental schooling, family income, household overcrowding and number of goods), social support (SSA questionnaire), oral health beliefs and psychosocial factors (Sense of Coherence [SOC-13 scale] and self-esteem [Rosenberg Self-Esteem Scale]). Health-related behaviours (toothbrushing frequency, sedentary behaviour, smoking and sugar consumption) and HRQoL [KINDL questionnaire] were assessed at 6-month follow-up. Structural Equation Modelling assessed the relationships between variables.
Results:…
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Factors associated with social isolation in community-dwelling older adults: a cross-sectional study.
Purpose: Social isolation in older adults is a major public health problem and associated with increased morbidity and mortality. There are limited data on the association between social isolation and physical function including gait speed. Hence, this study is to determine the prevalence of social isolation and its association with gait speed, frailty, cognition, depression and comorbidities amongst community-dwelling older adults.
Methods: Social isolation, depression, frailty and perceived general health were assessed using 6-item Lubben Social Network Scale (LSNS-6), Geriatric Depression Scale (GDS), FRAIL scale and EuroQol EQ-5D-5L questionnaire which includes EQ Visual Analogue Scale (EQ-VAS), respectively. Cognition was assessed using the Chinese Mini Mental State Examination (cMMSE), while physical performance test included gait speed and short physical performance battery test. …
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Johns SA, Stutz PV, Talib TL, Cohee AA, Beck-Coon KA, Brown LF, Wilhelm LR, Monahan PO, LaPradd ML, Champion VL, Miller KD, Giesler RB (2020)MEDLINE-indexed journal, not yet read by usCancer95 citations Acceptance and commitment therapy for breast cancer survivors with fear of cancer recurrence: A 3-arm pilot randomized controlled trial.
Background: Fear of cancer recurrence (FCR) has a profound negative impact on quality of life (QOL) for many cancer survivors. Breast cancer survivors (BCS) are particularly vulnerable, with up to 70% reporting clinically significant FCR. To the authors' knowledge, evidence-based interventions for managing FCR are limited. Acceptance and commitment therapy (ACT) promotes psychological flexibility in managing life's stressors. The current study examined the feasibility and preliminary efficacy of group-based ACT for FCR in BCS.
Methods: Post-treatment BCS (91 patients with stage I-III disease) with clinical FCR randomly were assigned to ACT (6 weekly 2-hour group sessions), survivorship education (SE; 6 weekly 2-hour group sessions), or enhanced usual care (EUC; one 30-minute group coaching session with survivorship readings). FCR severity (primary outcome) and avoidant coping, anxiety, p…
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Overweight, obesity, weight-related behaviors, and health-related quality of life among high-school students in Turkey.
Purpose: The purpose of this study was to assess the prevalence of overweight and obesity, and associated socio-demographic and lifestyle behaviors among a sample of high-school students in Turkey. This study also examined the effect of overweight and obesity on health-related quality of life in students.
Methods: A cross-sectional survey of 1216 adolescents aged 14-18 years old was conducted from 2018 to 2019 in Turkey, using questionnaire forms and anthropometric measurements. Classification of BMI was based on the WHO reference weight categories. Factors linked to adolescent obesity were identified using the binary logistic regression model and the degree of association was revealed by determining the odds ratio, at a confidence interval (CI) of 95%.
Results: The prevalence of overweight was 26.1%, while that of obese students was 12.8%. Factors associated with being obese included be…
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[Interdisciplinary multimodal inpatient pain treatment for young adults : Influence of autonomy on effectiveness].
Background: Emerging adulthood between the ages of 18 and 25 are vulnerable years that offer many opportunities and simultaneously represent huge challenges for autonomy and identity development. Chronic pain in this vulnerable stage of life is associated with long-term negative consequences. So far, knowledge regarding the effectiveness of treatment offers for this patient group is scarce.
Objective: The aim of this study is to examine the effectiveness of a multimodal inpatient pain therapy for young adults with chronic pain. In addition, the change and influence of the autonomy development will be investigated.
Materials and methods: The present longitudinal study examined the effectiveness of a 3-week multimodal inpatient pain treatment in young adults with chronic pain. Three-month follow-up data from 74 patients aged 18-25 years (75.7% female) were included in the study. Standardiz…
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