Quality of Life in Adolescents and Young Adults with and Without Spina Bifida: An Exploratory Analysis

2019 ◽  
Vol 49 ◽  
pp. 10-17 ◽  
Author(s):  
Monique M. Ridosh ◽  
Kathleen J. Sawin ◽  
Gayle Roux ◽  
Timothy J. Brei
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Spina Bifida ◽  
Exploratory Analysis ◽  
Adolescents And Young Adults

Factors associated with self-management independence and quality of life for adolescents and young adults with spina bifida engaged in a guideline-based transition clinic

2021 ◽  
pp. 1-11
Author(s):  
Ellen Fremion ◽  
Rachel Madey ◽  
Kristen A. Staggers ◽  
Melissa Morrison-Jacobus ◽  
Larry Laufman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Spina Bifida ◽  
Self Report ◽  
Life Assessment ◽  
Adolescents And Young Adults ◽  
Self Management ◽  
Transition Clinic ◽  
Bladder Management

PURPOSE: To determine characteristics associated with self-management independence and quality of life (QOL) among adolescents and young adults with spina bifida (AYASB) engaged in a spina bifida (SB) health care transition clinic. METHODS: During SB transition visits, Eighty-eight AYASB ages 14-20 completed the Adolescent/Young Adult Self-management and Independence Scale II Self-Report/SB (AMIS II-SR/SB), scores ranging from 1–7 with 7 indicating full independence in activities, and the QUAlity of Life Assessment in Spina bifida for Teens (QUALAS-T), which has two subscales, family/independence (QFI) and bowel/bladder (QBB), with scores ranging from 0-100 with 100 indicating maximal QOL score. Demographic and clinical variables were collected from the electronic medical record. RESULTS: The baseline AMIS II-SR/SB score was 3.3 (SD 1.0). Baseline scores for QUALAS-T QFI and QBB subscales were 73.8 (SD 19.9) and 63.8 (SD 25.8). Older age was associated with a higher baseline AMIS II-SR/SB score (p = 0.017). Over time, AMIS II-SR/SB total significantly improved (p <  0.001), but QFI and QBB did not. AYASB not on chronic intermittent catheterization (CIC) and those using urethral CIC significantly improved in AMIS II-SR/SB total scores (p = 0.001), but those using abdominal channel CIC did not. CONCLUSION: Baseline bladder management method was associated with self-management improvement for AYASB engaged in a SB-specific transition clinic.

scholarly journals Does the guided online cognitive behavioral therapy for insomnia “i-Sleep youth” improve sleep of adolescents and young adults with insomnia after childhood cancer? (MICADO-study): study protocol of a randomized controlled trial

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Shosha H. M. Peersmann ◽  
Annemieke van Straten ◽  
Gertjan J. L. Kaspers ◽  
Adriana Thano ◽  
Esther van den Bergh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cognitive Behavioral Therapy ◽  
Childhood Cancer ◽  
Pediatric Oncology ◽  
Behavioral Therapy ◽  
Cognitive Behavioral ◽  
Adolescents And Young Adults ◽  
Randomized Controlled

Abstract Background Adolescents and young adults who had childhood cancer are at increased risk for insomnia, due to being critically ill during an important phase of their life for the development of good sleep habits. Insomnia is disabling and prevalent after childhood cancer (26–29%) and negatively impacts quality of life, fatigue, pain, and general functioning and is often associated with other (mental) health problems. Insomnia and a history of childhood cancer both increase the risk of adverse health outcomes, posing a double burden for adolescents who had childhood cancer. The first-line treatment for insomnia is cognitive behavioral therapy for insomnia (CBT-I). However, access to this type of care is often limited. The guided online CBT-I treatment “i-Sleep” has been developed to facilitate access via online care. i-Sleep is shown effective in adult (breast cancer) patients, but it is unknown if iCBT-I is effective in pediatric oncology. Methods/design We developed a youth version of i-Sleep. Our aim is to evaluate its effectiveness in a national randomized-controlled clinical trial comparing iCBT-I to a waiting-list control condition at 3 and 6 months (n = 70). The intervention group will be also assessed at 12 months to see whether the post-test effects are maintained. Adolescents and young adults aged 12–30 years with insomnia, diagnosed with (childhood) cancer, currently at least 6 months since their last cancer treatment will be eligible. Outcomes include sleep efficiency (actigraphic), insomnia severity (self-report), sleep and circadian activity rhythm parameters, fatigue, health-related quality of life, perceived cognitive functioning, chronic distress, depressive and anxiety symptoms, and intervention acceptability. Discussion Insomnia is prevalent in the pediatric oncology population posing a double health burden for adolescents and young adults who had childhood cancer. If guided iCBT-I is effective, guidelines for insomnia can be installed to treat insomnia and potentially improve quality of life and the health of adolescents and young adults who had childhood cancer. Trial registration NL7220 (NTR7419; Netherlands Trial register). Registered on 2 August 2018

Quality of life in adolescents and young adults with CHD is not reduced: a systematic review and meta-analysis

2015 ◽  
Vol 26 (3) ◽  
pp. 415-425 ◽  
Author(s):  
Morten Schrøder ◽  
Kirsten A. Boisen ◽  
Jesper Reimers ◽  
Grete Teilmann ◽  
Jesper Brok
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Young Adults ◽  
Meta Analysis ◽  
Adolescents And Young Adults ◽  
Analysis Model ◽  
Significant Difference ◽  
Newcastle Ottawa Scale ◽  
First Time

AbstractPurposeWe performed a systematic review and meta-analysis of observational studies assessing quality of life in adolescents and young adults born with CHD compared with age-matched controls.MethodsWe carried out a systematic search of the literature published in Medline, Embase, PsychINFO, and the Cochrane Library’s Database (1990–2013); two authors independently extracted data from the included studies. We used the Newcastle–Ottawa scale for quality assessment of studies. A random effects meta-analysis model was used. Heterogeneity was assessed using the I2-test.ResultsWe included 18 studies with 1786 patients. The studies were of acceptable-to-good quality. The meta-analysis of six studies on quality of life showed no significant difference – mean difference: −1.31; 95% confidence intervals: −6.51 to +3.89, I2=90.9% – between adolescents and young adults with CHD and controls. Similar results were found in 10 studies not eligible for the meta-analysis. In subdomains, it seems that patients had reduced physical quality of life; however, social functioning was comparable or better compared with controls.ConclusionFor the first time in a meta-analysis, we have shown that quality of life in adolescents and young adults with CHD is not reduced when compared with age-matched controls.

scholarly journals Empowerment in adolescents and young adults (AYA) with cancer and its association with health-related quality of life

2016 ◽  
Vol 27 ◽  
pp. vi470
Author(s):  
S. Kaal ◽  
O. Husson ◽  
S. van Duivenboden ◽  
R. Jansen ◽  
E. Manten-Horst ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Adolescents And Young Adults ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Does the guided online cognitive behavioral therapy for insomnia “i-Sleep youth” improve sleep of adolescents and young adults with insomnia after childhood cancer? (MICADO-study): Study protocol of a randomized-controlled trial

2021 ◽  
Author(s):  
Shosha Peersmann ◽  
Annemieke van Straten ◽  
Gertjan Kaspers ◽  
Adriana Thano ◽  
Esther van den Bergh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Cognitive Behavioral Therapy ◽  
Childhood Cancer ◽  
Pediatric Oncology ◽  
Behavioral Therapy ◽  
Cognitive Behavioral ◽  
Adolescents And Young Adults ◽  
Randomized Controlled

Abstract Background: Adolescents and young adults who had childhood cancer are at increased risk for insomnia, due to being critically ill during an important phase of their life for the development of good sleep habits. Insomnia is disabling and prevalent after childhood cancer (26-29%) and negatively impacts quality of life, fatigue, pain and general functioning and is often associated with other (mental) health problems. Insomnia and a history of childhood cancer both increase the risk of adverse health outcomes, posing a double burden for adolescents who had childhood cancer. The first-line treatment for insomnia is cognitive behavioral therapy for insomnia (CBT-I). However, access to this type of care is often limited. The guided online CBT-I treatment “i-Sleep” has been developed to facilitate access via online care. i-Sleep is shown effective in adult (breast cancer) patients, but it is unknown if iCBT-I is effective in pediatric oncology. Methods/design: We developed a youth version of i-Sleep. Our aim is to evaluate its effectiveness in a national randomized-controlled clinical trial comparing iCBT-I to a waiting-list control condition at 3 and 6 months ( n =70). The intervention group will be also assessed at 12 months to see whether the post-test effects are maintained. Adolescents and young adults aged 12-30 years with insomnia, diagnosed with (childhood) cancer, currently at least 6 months since their last cancer treatment will be eligible. Outcomes include sleep efficiency (actigraphic), insomnia severity (self-report), sleep and circadian activity rhythm parameters, fatigue, health-related quality of life, perceived cognitive functioning, chronic distress, depressive- and anxiety symptoms and intervention acceptability. Discussion: Insomnia is prevalent in the pediatric oncology population posing a double health burden for adolescents and young adults who had childhood cancer. If guided iCBT-I is effective, guidelines for insomnia can be installed to treat insomnia and potentially improve quality of life and the health of adolescents and young adults who had childhood cancer. Trial registration: NL7220 (NTR7419; Netherlands Trial register), registered 02-August-2018

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