Life In Adult Survivors Research Articles

Health-Related Quality of Life in Adult Survivors After the Fontan Operation

The primary objective of this study was to ascertain the long-term health-related quality of life (HRQOL) of adult patients who underwent a childhood Fontan operation for palliation of univentricular cardiac anomalies. The secondary objective was to compare the long-term HRQOL of Fontan survivors to that of pediatric heart transplant recipients. This cross-sectional study examined adult survivors (>19 years) who underwent a Fontan operation during childhood (Fontan group) or a pediatric heart transplant (HT group) between 1988 and 2011 (23-year span). HRQOL was assessed using the short form 36 survey. The study group consisted of 49 Fontan group patients and 13 HT group patients who responded to the survey. HRQOL scores of the Fontan group were similar to those of an age-controlled healthy US population in social and mental functioning, energy or vitality, and overall mental component score (P ≥ 0.2). However, Fontan scores in physical functioning, bodily pain, general health, and overall by physical component were significantly lower than those of the age-controlled US population (P < 0.05). No differences were identified between Fontan and HT patients. This favorable life-satisfaction period (average 18 years) should be considered when informing patients and families of expectations with the Fontan pathway vs certain higher-risk procedures.

Health-Related Quality of Life in Adult Survivors after the Fontan Operation

Health-Related Quality of Life in Adult Survivors after the Fontan Operation

Association between the prevalence of symptoms and health-related quality of life in adult survivors of childhood cancer: a report from the St Jude Lifetime Cohort study.

We investigated the association between prevalence of symptoms and health-related quality of life (HRQOL) in adult survivors of childhood cancer enrolled in the St Jude Lifetime Cohort study. Eligibility criteria include childhood malignancy treated at St Jude, survival ≥ 10 years from diagnosis, and current age ≥ 18 years. Study participants were 1,667 survivors (response rate = 65%). Symptoms were self-reported by using a comprehensive health questionnaire and categorized into 12 classes: cardiac; pulmonary; motor/movement; pain in head; pain in back/neck; pain involving sites other than head, neck, and back; sensation abnormalities; disfigurement; learning/memory; anxiety; depression; and somatization. HRQOL was measured by using physical/mental component summary (PCS/MCS) and six domain scores of the Medical Outcomes Study 36-Item Short-Form Health Survey. Multivariable regression analysis was performed to investigate associations between symptom classes and HRQOL. Cumulative prevalence of symptom classes in relation to time from diagnosis was estimated. Pain involving sites other than head, neck and back, and disfigurement represented the most frequent symptom classes, endorsed by 58.7% and 56.3% of survivors, respectively. Approximately 87% of survivors reported multiple symptom classes. Greater symptom prevalence was associated with poorer HRQOL. In multivariable analysis, symptom classes explained up to 60% of the variance in PCS and 56% of the variance in MCS; demographic and clinical variables explained up to 15% of the variance in PCS and 10% of the variance in MCS. Longer time since diagnosis was associated with higher cumulative prevalence in all symptom classes. A large proportion of survivors suffered from many symptom classes, which was associated with HRQOL impairment.

Restricted access to the environment and quality of life in adult survivors of childhood brain tumors

Survivors of pediatric brain tumors (BTs) are at-risk for late effects which may affect mobility within and access to the physical environment. This study examined the prevalence of and risk factors for restricted environmental access in survivors of childhood BTs and investigated the associations between reduced environmental access, health-related quality of life (HRQOL), and survivors' social functioning. In-home evaluations were completed for 78 BT survivors and 78 population-based controls matched on age, sex, and zip-code. Chi-square tests and multivariable logistic regression models were used to calculate odds ratios (ORs) and 95 % confidence intervals (CIs) for poor environmental access and reduced HRQOL. The median age of survivors was 22 years at the time of study. Compared to controls, survivors were more likely to report avoiding most dimensions of their physical environment, including a single flight of stairs (p < 0.001), uneven surfaces (p < 0.001), traveling alone (p = 0.01), and traveling to unfamiliar places (p = 0.001). Overall, survivors were 4.8 times more likely to report poor environmental access (95 % CI 2.0-11.5, p < 0.001). In survivors, poor environmental access was associated with reduced physical function (OR = 3.6, 95 % CI 1.0-12.8, p = 0.04), general health (OR = 6.0, 95 % CI 1.8-20.6, p = 0.002), and social functioning (OR = 4.3, 95 % CI 1.1-17.3, p = 0.03). Adult survivors of pediatric BTs were more likely to avoid their physical environment than matched controls. Restricted environmental access was associated with reduced HRQOL and diminished social functioning. Interventions directed at improving physical mobility may have significant impact on survivor quality of life.

Quality of Life in Adult Survivors of Pediatric Kidney Transplantation

There are few studies assessing long-term adult outcome and health-related quality of life (HRQOL) in former pediatric high-risk kidney transplant (TX) recipients. Twenty-one patients were assessed at mean age of 21.1 years. Mean age at first TX was 2.4 years. Brain arterial border zone infarcts had been documented in 54% of the children. HRQOL was assessed with the general 15-dimensional (15D) instrument generating an index on a 0 and 1 scale (1 for best). The results were compared with the corresponding childhood 17-dimensional instrument and an adult control group from the general population. Psychosocial adjustment was assessed with the ASEBA Adult Self Report (ASR) and compared with the childhood Child Behavior Checklist assessments. Half of the patients (52%) had a secondary level general or vocational education. The educational outcome was evenly distributed (compulsory vs. secondary) regardless of previous childhood brain ischemia. The ASR Total Problems score was in the normal range for all patients. Four patients had scores in the pathological range for Externalizing or Internalizing Problems. There was a correlation between the childhood Child Behavior Checklist problem scores and the adult ASR scores for Internalizing and Total Problems but not for Externalizing Problems. Their mean 15D HRQOL index was 0.94 and lower than for the control group (0.97, P=0.04). There was a strong correlation between the childhood 17-dimensional and the adult 15D HRQOL index (r=0.63, P=0.003). The long-term outcome is fair in former high-risk pediatric TX patients with neurological comorbidity. Childhood psychosocial adjustment and HRQOL may predict the outcome in adults.

The Symptom Cluster Experience Profile Framework

To present the novel Symptom Cluster Experience Profile (SCEP) framework for guiding symptom research in adult survivors of childhood cancers and other subgroups at risk for high symptom burden. Empirically derived model of symptom cluster experience profiles, existing theoretical frameworks, and data-based literature on symptoms and quality of life in adult survivors of childhood cancers. In a previous study, the authors generated a preliminary model to characterize subgroups of adult survivors of childhood cancers with high-risk symptom cluster profiles. The authors developed the SCEP framework, which depicts symptom cluster experiences as subgroup-specific profiles that are driven by multiple sets of risk and protective factors. The risk and protective factors may directly and indirectly contribute to or alleviate symptoms through their effects on systemic stress. Systemic stress instigates and sustains the symptom experience that, in turn, is expressed through negative diffusion into other components of quality of life, such as functional status, general health perceptions, and overall quality of life. The SCEP framework is an initial approach to unbundle the complex heterogeneity that underlies the clustering of symptoms. By measuring a wide range of risk and protective factors in future studies of adult survivors of childhood cancers and other subgroups at risk for high symptom burden, further development and validation of the SCEP framework will occur. The SCEP framework can be used to specify mechanisms underlying symptom cluster profiles and derive interventions targeted to high-risk symptom profiles. Findings from future studies can be translated to risk-based surveillance and symptom management clinical practice guidelines.

Prospective evaluation of legal difficulties and quality of life in adult survivors of childhood cancer

Adult survivors of childhood cancer (ASCC), especially those of the central nervous system (CNS), have increased risks of educational and social difficulties. It is therefore hypothesized they are more likely to encounter legal difficulties (LDs), such as workplace discrimination and disability insurance denials, which may negatively affect their quality of life (QoL). We developed a survey to collect information on patients' legal needs. QoL was assessed using the Functional Assessment of Cancer Therapy (FACT). We prospectively approached 112 ASCC, 111 (99.1%) of whom completed the survey. The median age of respondents was 7 years at diagnosis and 31 years at survey completion. CNS tumors were the most common malignancy (32.4%). LDs were common overall (40.7%), though more prevalent in patients with CNS versus non-CNS tumors (58.6% vs. 32.3%; P = 0.023). The most prevalent LD was workplace discrimination (58.3%). On multivariate analysis, CNS tumor was the only variable significantly associated with LDs (OR = 4.49, P = 0.041). Individuals with LDs had lower QoL scores compared to those without LDs (79.96 versus 91.83 on the FACT; P = 0.005). On multivariate analysis, individuals with LDs had lower QoL scores (14.95 points lower on the FACT), which is both clinically and statistically significant (P = 0.047). Legal difficulties are common in adult survivors of childhood cancer, especially those with brain tumors. Furthermore, individuals with legal difficulties have worse quality of life. Research is needed to develop effective and accessible legal resource programs.

What Contributes to Quality of Life in Adult Survivors of Childhood Traumatic Brain Injury?

Adult outcome from childhood brain injury is largely unknown, and health professionals have minimal evidence available to inform families about their child's long-term prognosis. This study aimed to investigate long-term outcomes in this group, focusing on quality of life (QOL) and the injury, developmental, and environmental factors that influence this domain, using a retrospective and cross-sectional design. The sample was ascertained via medical record audit at the Royal Children's Hospital, Melbourne, Australia, and included 130 adult survivors of child traumatic brain injury (TBI) (84 men). Participants were 18-42 years at evaluation (mean = 23.2, SD = 3.3) and completed questionnaires regarding QOL and educational, employment, and psychological status. Analysis of variance, chi-square, and regression were employed to assess group differences and predictors of outcome. While most adult survivors of childhood TBI rated their QOL as intact, 17% of the sample reported poor QOL. Poor QOL was more likely with low levels of perceived independence, severe TBI, younger age at injury, failure to complete high school, and psychological problems. In conclusion, QOL in adult survivors of childhood TBI is better than expected and closely associated with both injury and noninjury factors, most consistently with the individual's perception of their level of independence.

Quality of Life in Adult Survivors Greater Than 10 Years After Pediatric Heart Transplantation

This study assessed quality of life (QOL) in adult survivors of pediatric heart transplantation who survived > or = 10 years after transplantation. Prospective data were collected from heart transplant recipients who were aged > or = 18 years and had survived > or = 10 years after transplantation (transplantation between July 3, 1986, and April 4, 1997). QOL data were collected from patients using the Medical Outcomes Study 36-Item Short Form (SF-36) Health Survey. Clinical data were collected from medical records. Statistical analyses included frequencies and measures of central tendency. Twenty-three patients (65% men, 91% white) completed the study. At the study initiation, they were a mean age of 9.0 +/- 7.1 years at transplantation, and were a mean age of 25.2 +/- 5.5 years (range, 18-34 years) and a mean of 16.2 +/- 3.0 years (range, 11-22 years) post-transplantation. Most were in school or working. Mean patient QOL scores from the SF-36v2 survey were 50.56 +/- 0.5 (range, 27.3-68.9) for physical health and 49.88 +/- 11.72 (range, 23.56-62.84) for mental health, similar to the general United States population. Late complications were frequent, including transplant coronary artery disease, 3; repeat heart transplantation, 2; post-transplantation lymphoproliferative disorder, 6; kidney transplantation, 5; acute late rejection, 5; and arrhythmias, 4. This report of QOL in adult survivors of pediatric heart transplantation shows patient perception of physical and mental health is similar to the general population despite serious late complications. A multicenter study is planned to further evaluate QOL in this unique cohort.

Health-related quality of life in adult survivors of childhood sarcoidosis

To describe health-related quality of life (hrQOL) in adult subjects who had sarcoidosis in childhood. Forty-six children (24 boys), all ethnic Danes <or=15 years of age with sarcoidosis were recorded in Denmark in 1979-1994. Three patients were deceased prior to this study. At follow-up, the 43 surviving adult subjects were invited to complete the short-form health survey questionnaire SF-36, being completed by 34 subjects (14 men). SF-36 scores were compared with the scores in the Danish reference population. At follow-up, 30/34 patients had recovered from sarcoidosis and 4/34 patients had persistent chronic active disease with impaired lung function. SF-36 scores in all domains were similar to scores in the reference population; the four patients with chronic active disease had lower scores in three domains. In the entire series, physical component summary (PCS) score and mental component summary (MCS) score was similar to the reference population. Childhood sarcoidosis has a favourable prognosis concerning health status in adulthood. The majority of adult subjects had a health status that was indistinguishable from a healthy reference population.

Physical activity and quality of life in adult survivors of non-Hodgkin's lymphoma.

To examine the prevalence and correlates of physical activity in adult survivors of aggressive non-Hodgkin's Lymphoma (NHL) and to explore the association between physical activity level and health-related quality of life (HRQOL). Physical activity and HRQOL data from 319 survivors of NHL (mean age, 59.8 years, standard deviation, +/-14.8) who were diagnosed in Los Angeles County approximately 2 to 5 years before the study was analyzed. One quarter of survivors of NHL met public health guidelines of 150 minutes or more of moderate to vigorous exercise per week. More than half (53%) reported some activity but less than 150 minutes per week, whereas 20% reported no physical activity. Females, those with lower perceived health competence, and individuals with more comorbid limitations were at increased risk for inactivity. Individuals who met public health guidelines reported better HRQOL than those who were sedentary. Interestingly, our findings suggest a significant positive association between HRQOL and those who get at least some exercise. The effort to promote physical activity among cancer survivors, who are at risk for poor quality of life as a result of treatment, is of great importance to the health of this growing population. As NHL, similar to other cancers, becomes a disease that people live with as opposed to one that people die as a result of, oncologists and primary care physicians will be increasingly challenged to provide evidence-based guidance for the long-term management of the patient's health. Consideration should be given to how clinicians frame exercise-promoting messages to cancer survivors, especially to those who are sedentary.

The legacy of childhood sexual abuse and family adversity.

To describe the process by which childhood adversity influences the life course of survivors of childhood sexual abuse. A community-based, qualitative, grounded-theory design. In this grounded theory study, data were drawn from open-ended interviews conducted as part of a larger study of women's and men's responses to sexual violence. The current study indicates the experiences of 48 female and 40 male survivors of childhood sexual abuse and family adversity. Data were analyzed using the constant comparison method. Participants described a sense of inheriting a life of abuse and adversity. The process by which childhood adversity influences the life course of adult survivors of childhood sexual abuse is labeled Living the Family Legacy. The theory representing the process of Living the Family Legacy includes three major life patterns: (a) being stuck in the family legacy, (b) being plagued by the family legacy, and (c) rejecting the family legacy/creating a new one. Associated with these life patterns are three processes by which participants passed on a legacy to others, often their children: (a) passing on the family legacy, (b) taking a stab at passing on a new legacy, and (c) passing on a new legacy. The legacy of abuse and adversity has a profound effect on the lives of survivors of childhood sexual abuse. There are several trajectories by which the influence of childhood adversity unfolds in the lives of adult survivors and by which the legacy is passed on to others. The model representing the theoretical process of Living the Family Legacy can be used by clinicians who work with survivors of childhood sexual abuse and childhood adversity, especially those who have parenting concerns.

Health-related quality of life in adult survivors after paediatric allo-SCT

Fifty-three adults who had received SCT as children responded to questionnaires on health-related quality of life (HRQoL) (Swedish HRQoL survey (SWED-QUAL)), sense of coherence (SOC), anxiety and depression (HAD) and a health and symptom inventory. Late effects were classified following the Common Terminology Criteria for Adverse Events (CTCAE) v. 3.0. HRQoL was below norm in 9 of 13 SWED-QUAL domains. Poorest domains (P<0.001) were satisfaction with physical health, general health, partner relations and sexual function, whereas emotional wellbeing and satisfaction with family life were on par with the norm. Older age, time elapsed post-SCT and fewer self-reported symptoms correlated with better HRQoL. Unfavourable late effect scores had no or limited impact, whereas age at SCT or TBI did not adversely affect HRQoL. Most subjects were well subjectively and objectively, whereas 24% had more complicated late effects. The median Karnofsky score was 90, 13% of subjects having scores below 80. In total, 53% reported pain, whereas 42.5% had memory and concentration problems. Anxiety and/or depression, reported by 35%, were associated with lower HRQoL and SOC ratings. Overall, 55% reported infertility and expressed difficulty with this. To conclude, childhood SCT did not negatively affect overall health for most of these adult long-term survivors, although poorer HRQoL with psychological and cognitive problems are common.

Quality of Life in Adult Survivors of Childhood Cancer

More children are surviving childhood cancer than ever before; however, little is known about these survivors' long-term quality of life (QOL). This study explores factors that might influence QOL in adult childhood cancer survivors. In a cross-sectional design, 70 of 100 eligible survivors from 1 long-term follow-up clinic completed a QOL and depression symptom measure. Medical information was abstracted from charts. Analysis revealed that survivors with elevated depressive symptoms had significantly lower QOL across all domains than those with lower levels of depressive symptoms. Regression analyses were conducted to further explore relationships. Depressive symptoms appear to be a major factor contributing to adverse QOL outcomes in adult survivors. Additional research should focus on the prevention of depression symptoms and effective treatment modalities for this unique population.

Health‐related quality of life in adult survivors of childhood Wilms tumor or neuroblastoma: A report from the childhood cancer survivor study

Long-term survivors of Wilms tumor and neuroblastoma may experience significant late adverse effects from their disease and its therapy. Little is known, however, about the health-related quality of life experienced by these survivors. Health-related quality of life, measured by the 36-Item Short Form Health Survey (SF-36), was assessed from self-report in adult survivors of Wilms tumor (N = 654) and neuroblastoma (N = 432) who participated in the Childhood Cancer Survivor Study. More than 90% of the study population was 18-34 years old at interview, and 58% were females. There was no significant difference on any SF-36 subscale or summary scale between the two diagnostic groups. On average, survivors reported no decrement on the Physical Component Summary scale of the SF-36 when compared to population norms. However, both groups scored significantly below the population mean score (50) on the Mental Component Summary Scale of the SF-36 (Wilms tumor mean = 41.66, standard error = 2.19, P < 0.0001; neuroblastoma mean = 42.41, standard error = 2.23, P < 0.0001) reflecting decreased emotional health. Independent risk factors for lower scores on this scale included female gender, Native American race, unemployment, and household income below $20,000. Adult survivors of childhood Wilms tumor and neuroblastoma do not differ from population norms on most health-related quality of life (HRQL) measures. These data, however, indicate that the emotional well being of adult survivors may be compromised. Health care providers should be aware of the risk of adverse outcomes in emotional health even many years after treatment and cure.

Quality of Life in Adult Survivors of Correction of Esophageal Atresia

Long-term quality of life (QOL) in adults after correction of esophageal atresia (EA) is comparable with that of healthy adults. Outcome study with a consecutive sample and follow-up after 16 years or longer. Pediatric surgical center (academic center) in a tertiary hospital. A questionnaire was sent to 119 consecutive surviving adults who were treated for EA between 1947 and 1986. The questionnaire was to assess sociodemographic characteristics and generic and disease-specific QOL and contained 3 open-ended questions about the consequences of the disease in daily life. Clinical characteristics were collected from patient case notes. Ninety-seven (82%) of the 119 questionnaires were completed and returned. When comparing the generic QOL of patients who had EA with that of healthy subjects, we found no differences in overall physical and mental health. The presence of concomitant congenital anomalies did not influence generic QOL. A third of the patients reported that EA had had negative effects on their daily lives. Gastrointestinal symptoms such as dysphagia were most often mentioned (23%). In general, after EA correction, patients perceive their generic and disease-specific QOL to be good. The presence of concomitant congenital anomalies did not influence generic QOL. However, a third of patients reported that the disease had had negative consequences.

Quality of life in adult survivors of critical illness: A systematic review of the literature

Quality of life in adult survivors of critical illness: A systematic review of the literature

Quality of life in adult survivors of critical illness: A systematic review of the literature

To determine how the quality of life (QOL) of intensive care unit (ICU) survivors compares with the general population, changes over time, and is predicted by baseline characteristics. Systematic literature review including MEDLINE, EMBASE, CINAHL and Cochrane Library. Eligible studies measured QOL > or = 30 days after ICU discharge using the Medical Outcomes Study 36-item Short Form (SF-36), EuroQol-5D, Sickness Impact Profile, or Nottingham Health Profile in representative populations of adult ICU survivors. Disease-specific studies were excluded. Of 8,894 citations identified, 21 independent studies with 7,320 patients were reviewed. Three of three studies found that ICU survivors had significantly lower QOL prior to admission than did a matched general population. During post-discharge follow-up, ICU survivors had significantly lower QOL scores than the general population in each SF-36 domain (except bodily pain) in at least four of seven studies. Over 1-12 months of follow-up, at least two of four studies found clinically meaningful improvement in each SF-36 domain except mental health and general health perceptions. A majority of studies found that age and severity of illness predicted physical functioning. Compared with the general population, ICU survivors report lower QOL prior to ICU admission. After hospital discharge, QOL in ICU survivors improves but remains lower than general population levels. Age and severity of illness are predictors of physical functioning. This systematic review provides a general understanding of QOL following critical illness and can serve as a standard of comparison for QOL studies in specific ICU subpopulations.

Quality of Life in Adult Survivors of Childhood Sexual Abuse Who Have Undergone Therapy

ABSTRACT This study examined perceptions of past sexual abuse experiences and quality of life among adult survivors of childhood sexual abuse. Fifty-two adult survivors (15 men, 37 women) of childhood paternal sexual abuse who had completed therapy were interviewed about their past and current life. A qualitative analysis of the interviews revealed three types of explanations for the offenders' abusive behavior (fathers and/or mothers in terms of compliance): characteristics of the offender-parent (incestuous father), the victim's characteristics, and circumstantial conditions. The results indicated that a higher percentage of survivors who attributed the abuse to the offender's characteristics managed to keep their self-esteem fairly intact and had a higher quality of life, in contrast to survivors who took full blame on themselves or blamed situational factors. The results further revealed that male survivors judged their quality of life as less satisfactory than did female survivors.

Quality of Life in Adult Survivors of Childhood Cancer

ABSTRACT Sixty-four adult survivors of childhood cancer, recruited via Israel's largest pediatric cancer treatment center, participated in a multi-dimensional assessment of long-term adjustment and quality of life in the domains of educational achievement, employment status, military service, family status, health, and psychological well-being. Subjects had been diagnosed with cancer prior to age 18, were three years or more off therapy with no evidence of disease, and over 18 years old at the time of the study. Data from structured interviews were compared to responses on similar items from a control group with no history of serious illness during childhood, matched for age, sex, and parental education levels. Results indicated an overall pattern of integration into the social mainstream, with similar objective levels of achievement for survivors and controls for most measures of education, employment, significant relationships, and psychological well-being. Results also indicated certain areas of disadvantage, such as military recruitment difficulties, lower income levels, and higher rates of workplace rejection. Significantly, almost half of the survivor sample reported subjective feelings that their illness experience had impaired their achievement in several domains. Quality of life is considered an important outcome parameter in terms of clinical decision making as well as in guiding preventive and supportive intervention efforts.