Dataset Information

Quality of Life (QoL) and Psychosocial Outcomes in Adult Survivors of Unilateral Retinoblastoma (RB) in China.

ABSTRACT: Purpose:To assess the quality of life (QoL) and the long-term psychosocial outcomes in adult survivors of unilateral retinoblastoma (RB). Methods:This is a cross-sectional study. Enrolment was offered to all adult survivors of unilateral RB who were treated by enucleation and were followed up in the Ninth People's Hospital of Shanghai Jiao Tong University School of Medicine; noncancer healthy adults served as a control group. All participants completed a series of questionnaires consisting of two aspects, QoL and psychosocial status. The psychosocial outcomes included anxiety, depression, fear of cancer, and satisfaction with facial appearance. Results:A total of 66 RB survivors (43.0% male) and 66 healthy adults (33.3% male) were aged 27.94?±?7.63 and 29.18?±?8.37 at the time of the study, respectively. Adult RB survivors did not have significantly higher rates of depression and anxiety compared with the control group, and they experienced a relatively good QoL. RB survivors were more likely to worry about their facial appearance (median, 1.59 [inter-quartile range, IQR, 1.27 to 2.16] v median, 0.36 [IQR, 0.09 to 1.18]; p < 0.001). Radiotherapy was not the factor affecting satisfaction with facial appearance (?, -0.27 [confidence interval, CI, -0.69 to 0.16]; p < 0.001). Radiotherapy was not the factor affecting satisfaction with facial appearance (p < 0.001). Radiotherapy was not the factor affecting satisfaction with facial appearance (p < 0.001). Radiotherapy was not the factor affecting satisfaction with facial appearance (. Conclusions:Unilateral RB survivors are a fairly healthy and resilient group. Most unilateral RB survivors experience a relatively good QoL, and they do not have poorer psychosocial functioning compared with a noncancer sample. Females may need more specific psychosocial care.

SUBMITTER: Feng Y

PROVIDER: S-EPMC7125462 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Quality of Life (QoL) and Psychosocial Outcomes in Adult Survivors of Unilateral Retinoblastoma (RB) in China.

Feng Yiyi Y Zhou Chuandi C Jia Renbing R Wang Yefei Y Fan Xianqun X

Journal of ophthalmology 20200312

<h4>Purpose</h4>To assess the quality of life (QoL) and the long-term psychosocial outcomes in adult survivors of unilateral retinoblastoma (RB).<h4>Methods</h4>This is a cross-sectional study. Enrolment was offered to all adult survivors of unilateral RB who were treated by enucleation and were followed up in the Ninth People's Hospital of Shanghai Jiao Tong University School of Medicine; noncancer healthy adults served as a control group. All participants completed a series of questionnaires c ...[more]

PMID: 32280521

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Project description:Importance:Retinoblastoma survivors are at risk for adverse oculo-visual outcomes. Limited data are available regarding long-term vision-targeted health-related quality of life (HRQoL) of adult retinoblastoma survivors. Objective:To examine vision-targeted HRQoL as reported on the 25-item National Eye Institute Visual Field Questionnaire for overall and specific scale scores among adult survivors of retinoblastoma. Design, Setting, and Participants:The Retinoblastoma Survivor Study is a retrospective cohort of adult retinoblastoma survivors treated at 3 academic medical centers in New York between 1932 and 1994. Participants completed a comprehensive questionnaire between April 2008 and June 2010. Items were scored in January 2013 and preliminary analyses were performed in July 2015. Models were finalized in May 2017. Main Outcomes and Measures:Self-reported vision-targeted HRQoL as reported on the 25-item National Eye Institute Visual Field Questionnaire. Items are scored from 0 to 100, with 100 representing the highest quality of life. Results:Among 470 adult retinoblastoma survivors (53.6% with bilateral disease; 52.1% female; 86.4% white and non-Hispanic; mean age at study, 43.3 years; range, 18.0-77.0 years), 86% had at least 1 eye removed (1 eye, 74.5%; both eyes, 11.5%); 56.5% were previously treated with radiotherapy; and 61.3% rated their eyesight as excellent/good while 16.2% reported complete blindness. The overall mean (SD) VFQ composite score for all survivors was 81.1 (17.2) (mean [SD] score for unilateral retinoblastoma survivors, 91.4 [7.7]; bilateral retinoblastoma survivors, 72.3 [18.2]; difference between survivors with unilateral and bilateral disease, 19.1 [95% CI, 16.5-21.7; P < .001]). Prior exposure to radiotherapy was not associated with decreased overall VFQ (β = -0.08; 95% CI, -0.15 to 0.002; P = .06) but was related to a few specific subdomains of visual functioning. Conclusions and Relevance:These findings suggest retinoblastoma-related oculo-visual problems are associated with functional status and vision-targeted HRQoL of adult survivors, particularly among those with bilateral disease.

Project description:BACKGROUND:Children with non-Hodgkin lymphoma (NHL) undergo treatment with central nervous system-directed therapy, the potentially neurotoxic effects of which have not been reported in NHL survivors. METHODS:NHL survivors (n?=?187) participating in the St. Jude Lifetime Cohort who were 10 or more years from their diagnosis and were 18 years old or older underwent neurocognitive, emotional distress (Brief Symptom Inventory 18), and health-related quality of life (HRQOL) assessments (36-Item Short Form Health Survey). Age-adjusted z scores were compared with community controls (n?=?181) and normative data. Treatment exposures were abstracted from medical records. Models adjusted for the age, sex, and time from diagnosis were used to calculate the risk of impairment. RESULTS:The mean ages at evaluation were similar for the survivors and the controls (35.7?±?8.9 vs 35.5?±?11.0 years; P?=?.86). Survivors were 25.2?±?8.8 years from their diagnosis: 43 (23%) received cranial radiation, 70 (37%) received high-dose methotrexate, 40 (21%) received high-dose cytarabine, and 151 (81%) received intrathecal chemotherapy. Survivors' intelligence and attention were within normal limits; however, their memory, executive function, processing speed, and academics were impaired in comparison with both population norms and community controls (P values?<?.05). Treatment-related exposures were not associated with neurocognitive function; however, neurocognitive impairment was associated with lower educational attainment, unemployment, and occupational status (P values?<?.03). Slower processing speed and worse self-reported executive function were associated with symptoms of depression (P values???.003) and poorer HRQOL (P values?<?.05). CONCLUSIONS:Adult survivors of childhood NHL experience impaired neurocognitive function, which is associated with lower social attainment and poor HRQOL. Early-detection and intervention strategies are recommended. Cancer 2017. © 2017 American Cancer Society.

Project description:BackroundThe number of cancer survivors is growing steadily and increasingly, clinical trials are being designed to include long-term follow-up to assess not only survival, but also late effects and health-related quality of life (HRQOL). Therefore it is is essential to develop patient-reported outcome measures (PROMs) that capture the full range of issues relevant to disease-free cancer survivors. The objectives of this project are: 1) to develop a European Organisation for Research and Treatment of Cancer (EORTC) questionnaire that captures the full range of physical, mental and social HRQOL issues relevant to disease-free cancer survivors; and 2) to determine at which minimal time since completion of treatment the questionnaire should be used.MethodsWe reviewed 134 publications on cancer survivorship and interviewed 117 disease-free cancer survivors with 11 different types of cancer across 14 countries in Europe to generate an exhaustive, provisional list of HRQOL issues relevant to cancer survivors. The resulting issue list, the EORTC core questionnaire (QLQ-C30), and site-specific questionnaire modules were completed by a second group of 458 survivors.ResultsWe identified 116 generic survivorship issues. These issues covered body image, cognitive functioning, health behaviors, negative and positive outlook, health distress, mental health, fatigue, sleep problems, physical functioning, pain, several physical symptoms, social functioning, and sexual problems. Patients rated most of the acute symptoms of cancer and its treatment (e.g. nausea) as no longer relevant approximately one year after completion of treatment.ConclusionsCompared to existing cancer survivorship questionnaires, our findings underscore the relevance of assessing issues related to chronic physical side effects of treatment such as neuropathy and joint pain. We will further develop a core survivorship questionnaire and three site-specific modules for disease-free adult cancer survivors who are at least one year post-treatment.

Project description:BackgroundThe National Cancer Institute has catalyzed research in adolescent and young adult (AYA) oncology by identifying the need for supportive care intervention studies and psychometrically robust health-related quality of life (HRQOL) measures. We evaluated progress toward these goals (1) examining changes in the number of registered psychosocial intervention trials being conducted with AYAs over time; (2) determining what domains of HRQOL were assessed across these intervention trials; and (3) identifying the most frequently used measures of HRQOL.MethodsWe conducted a systematic review of psychosocial intervention trials for AYAs registered on ClinicalTrials.gov from 2007 to 2021. Following identification of relevant trials, we extracted the outcome measures and determined whether they were measures of HRQOL and which HRQOL domains were evaluated. Descriptive statistics were used to summarize trial and outcome characteristics.ResultsWe identified 93 studies that met our inclusion criteria and 326 HRQOL outcomes across studies. The average number of clinical trials conducted annually has increased from 2 (SD = 1) during the years of 2007-2014 to 11 (SD = 4) during the years of 2015-2021. 19 trials (20.4%) did not include a measure of HRQOL. HRQOL measures varied widely, and most evaluated psychological and physical domains. Of the 9 measures used 5 + times, none were developed to cover the full AYA age spectrum.ConclusionsThis review demonstrated that the number of AYA psychosocial intervention trials conducted annually has increased. However, it also revealed several important areas for additional work including: (1) ensuring psychosocial trials include HRQOL measures; (2) increasing the frequency of evaluation of underrepresented domains of HRQOL (e.g., body image, fertility/sexuality and spiritual); and (3) improving the validity and standardization of measures used to evaluate domains of HRQOL across AYA-focused trials to improve the field's ability to compare the impact of different psychosocial interventions on HRQOL outcomes.

Project description:BACKGROUND:The implementation of neonatal screening and the early initiation of lifelong therapy have helped to prevent severe complications and enabled much more favorable outcomes for early-treated phenylketonuria (ETPKU) patients. However, PKU patients tend to develop subtle cognitive and psychosocial abnormalities and the strict dietary therapy can present financial and social burden. Thus, PKU is expected to affect the quality of life (QoL) of these patients. There is insufficient evidence regarding the relationship between metabolic control and Health-Related QoL (HRQoL). We aimed to assess the effect of short- and long-term therapy on QoL among Hungarian adult PKU patients using the standardized PKU-specific PKU-QoL questionnaire. Methods: We conducted a single-centre, cross-sectional, observational study in Hungary. We included adult PKU patients treated with diet and amino acid supplements only. Patients reported HRQoL using the standardized adult PKU-QoL questionnaire and mean blood Phe concentrations were assessed for three different time periods: the previous 10 years, the previous year and concentration at the time of completing the questionnaire. The correlation between patients' QoL scores and their Phe levels was assessed. The classical PKU group was further divided into "good" and "suboptimal" adherence groups based on individual mean Phe levels in the examined time period. We evaluated differences in QoL among the two subgroups of classical PKU patients. QoL scores between classical and non-classical patients were also compared. Results: Data from 88 adult patients were analysed (66 had classical PKU). No median PKU-QoL score reached major or severe impact/frequent symptoms in any domain. The highest scores (meaning larger burden) were mostly related to emotional impact of PKU and disease management. When performing correlation analysis between Phe levels and QoL scores by all patients we found weak to fair positive correlation in several domains either short or long term. Patients with classical PKU reported greater financial impact of PKU than patients with less severe PKU. Classical PKU patients with good therapy adherence tended to report better HRQoL scores than patients with suboptimal adherence. Conclusion: We conclude that patients showed good HRQoL using the PKU-specific questionnaire. Our study demonstrates that suboptimal metabolic control is negatively associated with patients' HRQoL.

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Dataset Information

Quality of Life (QoL) and Psychosocial Outcomes in Adult Survivors of Unilateral Retinoblastoma (RB) in China.

Publications

Quality of Life (QoL) and Psychosocial Outcomes in Adult Survivors of Unilateral Retinoblastoma (RB) in China.

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