Life In Young Adult Survivors Research Articles

Daily functioning and (health-related) quality of life of young adult survivors of childhood bacterial meningitis.

Young adult survivors of childhood BM reported similar and even better levels of daily functioning, HRQoL, and overall QoL than age-matched Dutch reference scores. However, clinicians and healthcare workers should be mindful of poor mental and physical health of some survivors of childhood BM because these survivors also face problems with functioning in daily life. • Acute bacterial meningitis is a life-threatening infection which may lead to devastating lifelong disabilities. • Health-related quality of life is decreased in school-age survivors of bacterial meningitis. • The present study shows that HRQoL in survivors of childhood BM improves over time • However, especially poor mental health in adolescent and young adult survivors is associated with impaired functioning in daily life.

Mental wellness and health-related quality of life of young adult survivors of childhood cancer in Singapore.

Childhood cancer survivors (CCS) are at risk of experiencing psychological distress years after completing cancer treatments. We aimed to assess the prevalence and associated risk factors affecting psychological distress and health-related quality of life (HRQOL) among CCS in Singapore, and compare with their siblings without a history of or existing cancer as control. We recruited 143 young adult CCS aged ≥18 years attending survivorship clinics at KK Women's and Children's Hospital in Singapore who were in remission for ≥5 years and treatment-free for ≥2 years, and 57 siblings. CCS and siblings were matched at a 1:1 ratio based on sociodemographic factors yielding 46 pairs for comparison. Among CCS participants, 79 (55.2%) were male, 86 (60.1%) had leukaemia, 29 (20.3%) had solid tumours, 15 (10.5%) had lymphoma and 13 (9.1%) had brain tumours. All participants completed the Brief Symptom Inventory-18 (BSI-18) and Medical Outcomes Short Form-36 (MOS SF-36) questionnaires from August 2021 to July 2022. There were 35 (24.5%) CCS who reported psychological distress in the BSI-18 Global Severity Index. Five (3.5%) and 31 (21.7%) CCS reported low HRQOL in the physical and mental composite scores, respectively. Mean scores between CCS and their siblings were not statistically significant across all domains of the BSI-18 and MOS SF-36. Associated risk factors for psychological distress and low HRQOL among CCS were history of psychiatric illness after cancer diagnosis and mood affected by the COVID-19 pandemic. CCS reported significant psychological distress and low HRQOL although they were not statistically different from their siblings. A holistic and risk factor-centric follow-up programme can aid early detection and mitigation of psychological late effects for CCS and their families.

Health-Related Quality of Life in Young Adult Survivors of Hematopoietic Cell Transplantation

Young adults (YA), age 18 to 39 years, are at a stage of life that may make them more vulnerable than older adults to impairments in health-related quality of life (HRQOL) during and after hematopoietic cell transplantation (HCT). Health self-efficacy (HSE), the belief that one can implement strategies to produce a desired health outcome, has been associated with health outcomes in oncology research. Little is known about HRQOL or HSE in YA HCT survivors compared with older HCT survivors. Given the age-specific psychosocial challenges facing YA HCT recipients and research on non-transplant YA cancer survivors, we hypothesized that YA survivors would have worse post-HCT HRQOL compared with older adults, and that among YA HCT survivors, higher levels of HSE would be associated with higher levels of HRQOL and lower levels of cancer-related distress. This was a cross-sectional secondary analysis of 2 combined baseline datasets from multicenter studies of HCT survivors approached for participation in clinical trials of survivorship interventions. Participants from 20 transplantation centers in the United States were at 1 to 10 years post-HCT and age ≥18 years at the time of study enrollment, had no evidence of disease relapse/progression or subsequent malignancies, and could read English adequately to consent for and complete assessments. Medical record and patient-reported data were obtained for demographics and HCT-related clinical factors and complications (eg, total body irradiation, chronic graft-versus-host disease [cGVHD]). Participants completed surveys on HRQOL, including the Short-Form [SF]-12, HSE, and Cancer and Treatment Distress (CTXD), which includes 6 subscales and reports an overall mean score. On the SF-12, both the Mental Component Score (MCS) and Physical Component Score (PCS) were calculated. Two cohorts were compared: YAs (age 18 to 39 years at transplantation) and older adults (age ≥40 years at transplantation). Multiple linear regression analyses identified factors associated with HSE, PCS, MCS, and CTXD in YAs. In this analysis of 979 survivors, compared with the older adults, the YA participants had lower median mental health scores (SF-12 MCS: 48.40 versus 50.23; P=.04) and higher cancer-related distress (CTXD: .96 versus .85; P=.04), but better physical health (SF-12 PCS: 48.99 versus 47.18; P=.049). Greater overall cancer-related distress was driven by higher levels of uncertainty, financial concern, and medical demand subscales for YAs compared with older adults. Young adults also had lower HSE (2.93 versus 3.08; P=.0004). In a multivariate model, HSE was strongly associated with age group (P=.0005) after adjusting for multiple other transplantation-related factors. Among YAs, HSE was associated with the SF-12 MCS and PCS and the CTXD, and HSE remained significant after adjusting for other transplantation-related factors. Overall, the YA HCT survivors had lower mental health, increased cancer-related distress, and lower levels of HSE compared with the older adults. Although the direction of these effects cannot be determined with these data, the strong association between HSE and HRQOL among YAs suggests that targeting interventions to improve HSE may have broad impact on health outcomes.

Mothers’ and fathers’ views of family management and health-related quality of life for young adult survivors of childhood brain tumors

Purpose To examine associations between fathers’ and mothers’ appraisals of family management and physical and emotional health-related quality of life (QOL) for young adult survivors of childhood brain tumors. Design Cross-sectional. Sample 47 mothers and 39 fathers (39–67 years old); 47 survivors (18–33 years old) Methods Analyses evaluated relationships among family management (Survivor’s Daily Life, Condition Management Ability, Condition Management Effort, Family Life Difficulty, View of Condition Impact, Parental Mutuality), quality of life, and parental role. Findings Except for Parental Mutuality, family management ratings were not significantly different for mothers and fathers, and parental views of survivors’ physical and emotional QOL improved with better family management. Parental role moderated associations between physical and emotional QOL and Survivors’ Daily Life and between emotional QOL and Condition Management Ability, Condition Management Effort, and View of Condition Impact. Implications for Psychosocial Providers Assess and address survivor QOL through family management from multiple perspectives.

Skeletal outcome in long-term survivors of childhood high-risk neuroblastoma treated with high-dose therapy and autologous stem cell rescue.

High-dose therapy and hematopoietic stem cell transplantation (HSCT) have been shown to improve survival rates in high-risk neuroblastoma (HR-NBL), but may cause adverse effects on the growing skeleton. We studied skeletal health in a national cohort of long-term survivors of HR-NBL (n=21; age 16-30 years, median 22 years) and in 20 healthy age- and sex-matched controls. In addition to clinical evaluation and measurement of bone mineral density (BMD) by dual-energy X-ray absorptiometry, we performed spinal magnetic resonance imaging. Skeletal complications were categorized according to Common Terminology Criteria for Adverse Events (CTCAE). Altogether, 18/21 survivors presented with at least one skeletal adverse event according to CTCAE, the most common skeletal complications being short stature (n=14) and osteopenia (n=13). Altogether, 38% of the subjects had a severe complication (CTCAE score ⩾3) including bilateral slipped capital femoral epiphyseolysis in 3/21. Fracture rate was not increased. In spinal MRI, no vertebral fractures were found and degenerative intervertebral disc changes were equally prevalent in survivors and controls. BMD was lower in survivors than controls, but differences became non-significant when adjusted for bone size. In conclusion, skeletal late complications are common and can significantly impair the quality of life in young adult survivors of HR-NBL treated with high-dose protocols and HSCT.

Family Functioning Mediates the Association Between Neurocognitive Functioning and Health-Related Quality of Life in Young Adult Survivors of Childhood Brain Tumors

Childhood brain tumor (BT) survivors experience significant neurocognitive sequelae that affect health-related quality of life (HRQOL). A model of neurodevelopmental late effects and family functioning in childhood cancer survivors suggests associations between survivor neurocognitive functioning, family functioning, and survivor HRQOL. This study examines the concurrent associations between survivor neurocognitive functioning, family functioning, and survivor emotional HRQOL, and the indirect effects of neurocognitive functioning on survivor emotional HRQOL through family functioning. Participants included young adult-aged childhood BT survivors (18-30 years old; N=34) who were on average 16 years post-diagnosis, and their mothers. A brief neuropsychological battery assessed working and verbal memory, processing speed, and executive functioning. Survivors and mothers completed measures of family functioning, and mothers completed a proxy-report measure of survivor HRQOL. Spearman bivariate correlations examined the associations between indices of survivor neurocognitive functioning and concurrent family functioning and survivor emotional HRQOL. Poorer survivor processing speed, working memory, verbal memory, and executive function were significantly associated with worse survivor- and mother-reported family functioning (r's range: 0.36-0.58). Additionally, worse survivor processing speed and executive function were significantly associated with poorer survivor emotional HRQOL (r's range: 0.44-0.48). Bootstrapping analyses provided evidence for the indirect effects of neurocognitive functioning on survivor emotional HRQOL through family functioning. These findings suggest that family functioning is an important variable that might mitigate the negative influence of neurocognitive late effects on survivors and is a potential target in future interventions.

Quality of Life of Young Adult Survivors of Hematologic Malignancies

Hematologic malignancies occur frequently in young adults. With treatment, many patients are able to survive. Issues of dependency and peer group membership present unique challenges to this subset of cancer survivors. Interest in cancer survivorship has grown, but little is known about the quality of life (QOL) of young adult survivors. The objectives of this study were to examine QOL among young adult survivors in relation to middle-aged and older adults, identify common areas of concern, and explore the association of individual characteristics with levels of QOL. This was a descriptive correlational study using a convenience sample of 48 patients, aged 18 to 35 years at time of diagnosis. Data collection consisted of a 1-time telephone interview utilizing the City of Hope Quality of Life of Cancer Survivors questionnaire and 3 open-ended questions. No significant correlations were found between QOL dimensions and current age, age at treatment completion, or time since treatment completion. Social well-being was related to age and spiritual well-being to race. A substantial proportion of the sample identified the need for additional education and peer group support. Results support the importance of developing survivorship programs tailored to the needs of the young adult patient. This may include ongoing opportunities to meet with other survivors and referrals to appropriate support resources. Data suggest that the need for survivorship services exists beyond the first few years after treatment completion. Young adult patients who may be at higher risk for decreased QOL can be targeted for earlier intervention.

Functional outcomes and quality of life of young adults who survive out-of-hospital cardiac arrest

BackgroundEvaluating the quality of life of young adult survivors of out-of-hospital cardiac arrest (OHCA) is important as they are likely to have a longer life expectancy than older patients. The...

Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies.

Purpose: The occurrence of late effects, combined with traditional growth and developmental issues, can significantly affect the health-related quality of life (HRQOL) of young adult survivors of childhood cancer (YASCC). Limited HRQOL measurement tools have been developed or validated for YASCC. The purpose of this study was to identify the domains of HRQOL that are unique to YASCC by conducting a systematic review of qualitative studies. Specifically, we compared the findings to the classical framework of HRQOL that was developed for survivors of adult-onset cancer and identified specific domains not being assessed in existing HRQOL instruments for YASCC. Methods: We searched qualitative studies published in peer-reviewed journals from 2000 to 2010 in the PsychINFO, PubMed, and EBSCOhost databases. A set of keywords and inclusion/exclusion criteria were utilized to identify eligible studies with a focus on survivorship and HRQOL issues of YASCC. Results: Sixteen studies met the inclusion/exclusion criteria and were investigated in this study. Six important domains of HRQOL were identified (physical, social, psychological, spiritual, fertility/sexual, resilience, and body appearance) with several sub-domains. Conclusion: Use of the classical HRQOL framework and existing instruments is not comprehensive enough for YASCC. Adding unique domains to the classical framework and existing instruments will make them valuable tools for measuring the HRQOL of YASCC and increase health professionals' ability to identify if and when psychosocial services are needed for this unique population.

Quality of Life in Young Adult Survivors of Biliary Atresia: Results From a National Cohort

Quality of Life in Young Adult Survivors of Biliary Atresia: Results From a National Cohort

A predictive model of health-related quality of life in young adult survivors of childhood cancer

A predictive model of health-related quality of life in young adult survivors of childhood cancerThis study aimed to examine factors that affect survivors' health-related quality of life (HRQoL), using a theoretical model in which demographic and medical characteristics explain HRQoL mediated by course of life, coping and social support. In a cross-sectional design, 353 survivors aged 18-30 years completed questionnaires. Structural equation modelling was performed to investigate the relationships among the variables in the model and to test whether the model fitted the data. The model fitted the data closely: chi(2)(14) = 21.61, P = 0.087; root mean square error of approximation = 0.039, 90% confidence interval [0.00; 0.070]. The effect of medical and demographic characteristics on HRQoL was mediated by coping. Survivors having been treated with both chemotherapy and radiotherapy were most at risk for worse HRQoL because they suffer more from current health complaints and were less inclined to predictive and active coping. Screening survivors medically as well as psychosocially could help to identify patients with the greatest needs and direct interventions by which the follow-up care could be improved.

Séquelles et qualité de vie chez de jeunes adultes survivants de cancers pédiatriques

The long-term survival rate of childhood cancer is around 70%, but cancer- and treatment-related sequelae and the risk of a second malignancy may impair the survivors' quality of life.Fifty-four patients older than 18 years, treated for a cancer between 1988 and 1996, and considered as cured for at least 5 years, were asked to participate. Data on cancer, treatment and sequelae were extracted from the Rhône-Alpes childhood cancer registry and from the medical charts. Health-related quality of life was assessed with the SF-36 scale. Lifestyle, educational level, present occupation, subjective health, and worries were assessed with a detailed questionnaire.Forty-three young adult patients participated (16 female, 27 male, mean age 23 [range: 18-32]). Primary cancers were leukaemias (35%), lymphomas (19%), solid tumors (34%) and central nervous system tumors (12%). Nine percent of the subjects had received cranio-spinal radiotherapy, and 14% a total body irradiation followed by bone marrow transplantation. Two patients (5%) had developed a second malignancy, 30% have an endocrine insufficiency, 14% have neurological or psychological impairment, and 21% have orthopaedic sequelae. Health-related quality of life of the population as a whole, as assessed by SF-36, is close to normative data published for healthy population of that age. Female gender, certain types of cancer (neuroblastoma, bone tumors and carcinomas), and the presence of endocrine sequelae are predictors of a worse quality of life. Only 3 patients (7%) declared having had to shorten their education because of their cancer; 63% are currently employed, 25% are students or apprentices. Worries about fertility are often mentioned; half of the subjects declare having received no formal instruction about their medical follow-up in adult age.Although the quality of life of young adult survivors of childhood cancer as a whole does not seem very much altered, many of these survivors experience adverse sequelae warranting medical and psychological attention. Some of their preoccupations, such as worries about reproductive capacity and inheritability of their cancer, are often ignored.

Quality of life in young adult survivors of childhood cancer.

In recent years the necessity of measuring quality of life in childhood cancer survivors has been stressed. This paper gives an overview of the results of studies into the quality of life (QL) of young adult survivors of childhood cancer and suggest areas for future research. The review located 30 empirical studies published up to 2001. The results are described in terms of the following QL dimensions: physical functioning (QL, general health), psychological functioning (overall emotional functioning, depression and anxiety, self-esteem), social functioning (education, employment, insurance, living situation, marital status and family), and sexual functioning. Factors related to survivors' QL are reported: demographics and illness- and treatment related variables. Although the literature yields some inconsistent findings, a number of clear trends can be identified: (a) most survivors reported being in good health, with the exception of some bone tumour survivors; (b) most survivors function well psychologically; (c) survivors of CNS tumours and survivors of acute lymphoblastic leukaemia (ALL) are at risk for educational deficits; (d) job discrimination, difficulties in obtaining work and problems in obtaining health and life insurance were reported; (e) survivors have lower rates of marriage and parenthood; (f) survivors worry about their reproductive capacity and/or about future health problems their children might experience as a result of their cancer history. There is a need for methodological studies that measure QL among survivors of childhood cancer more precisely by taking into account the effects of the severity of the cancer and the long-term impact of different treatments. Additional data are needed to help us understand the needs of survivors and to identify those subgroups of survivors who are at greatest risk for the adverse sequelae of the disease and its treatment.