Dataset Information

Exploring the interconnectedness between health-related quality of life factors among long-term adolescent and young adult cancer survivors (AYAs): a network analysis.

ABSTRACT:

Purpose

Adolescent and young adult cancer survivors (AYAs) are at increased risk of long-term and late effects, and experience unmet needs, impacting their health-related quality of life (HRQoL). In order to provide and optimize supportive care and targeted interventions for this unique population, it is important to study HRQoL factors' interconnectedness on a population level. Therefore, this network analysis was performed with the aim to explore the interconnectedness between HRQoL factors, in the analysis described as nodes, among long-term AYAs.

Methods

This population-based cohort study used cross-sectional survey data of long-term AYAs, who were identified by the Netherlands Cancer Registry (NCR). Participants completed a one-time survey (SURVAYA study), including the EORTC survivorship questionnaire (QLQ-SURV111) to assess their long-term HRQoL outcomes and sociodemographic characteristics. The NCR provided the clinical data. Descriptive statistics and a network analysis, including network clustering, were performed.

Results

In total, 3596 AYAs (on average 12.4 years post diagnosis) were included in our network analysis. The network was proven stable and reliable and, in total, four clusters were identified, including a worriment, daily functioning, psychological, and sexual cluster. Negative health outlook, part of the worriment cluster, was the node with the highest strength and its partial correlation with health distress was significantly different from all other partial correlations.

Conclusion

This study shows the results of a stable and reliable network analysis based on HRQoL data of long-term AYAs, and identified nodes, correlations, and clusters that could be intervened on to improve the HRQoL outcomes of AYAs.

SUBMITTER: Bootsma TI

PROVIDER: S-EPMC10787889 | biostudies-literature | 2024 Jan

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Exploring the interconnectedness between health-related quality of life factors among long-term adolescent and young adult cancer survivors (AYAs): a network analysis.

Bootsma Tom I TI van de Wal Deborah D Vlooswijk Carla C Roos Daniëlle C DC Drabbe Cas C Tissier Renaud R Bijlsma Rhodé M RM Kaal Suzanne E J SEJ Kerst Jan Martijn JM Tromp Jacqueline M JM Bos Monique E M M MEMM van der Hulle Tom T Lalisang Roy I RI Nuver Janine J Kouwenhoven Mathilde C M MCM van der Graaf Winette T A WTA Janssen Silvie H M SHM Husson Olga O

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20240113 2

<h4>Purpose</h4>Adolescent and young adult cancer survivors (AYAs) are at increased risk of long-term and late effects, and experience unmet needs, impacting their health-related quality of life (HRQoL). In order to provide and optimize supportive care and targeted interventions for this unique population, it is important to study HRQoL factors' interconnectedness on a population level. Therefore, this network analysis was performed with the aim to explore the interconnectedness between HRQoL fa ...[more]

PMID: 38217712

Similar Datasets

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:ImportanceCancer diagnosis and treatment may adversely affect reproductive outcomes among female cancer survivors.ObjectiveTo compare the birth outcomes of adolescent and young adult cancer survivors (AYA [diagnosed at ages 15-39 years]) with those of women without a cancer diagnosis.Design, setting, and participantsThe North Carolina Central Cancer Registry (CCR) was used to identify female AYA cancer survivors diagnosed from January 2000 to December 2013; CCR records were linked to statewide birth certificate files from January 2000 to December 2014 to identify postdiagnosis live births to AYA survivors (n = 2598). A comparison cohort of births to women without a recorded cancer diagnosis was randomly selected from birth certificate files (n = 12 990) with frequency matching on maternal age and year of delivery.Main outcomes and measuresPrevalence of preterm birth, low birth weight, small-for-gestational-age births, cesarean delivery, and low Apgar score.ResultsOverall, 2598 births to AYA cancer survivors (mean [SD] maternal age, 31 [5] years) were included. Births to AYA cancer survivors had a significantly increased prevalence of preterm birth (prevalence ratio [PR], 1.52; 95% CI, 1.34-1.71), low birth weight (PR, 1.59; 95% CI, 1.38-1.83), and cesarean delivery (PR, 1.08; 95% CI, 1.01-1.14) relative to the comparison cohort of 1299. The higher prevalence of these outcomes was most concentrated among births to women diagnosed during pregnancy. Other factors associated with preterm birth and low birth weight included treatment with chemotherapy and a diagnosis of breast cancer, non-Hodgkin lymphoma, or gynecologic cancers. The prevalence of small-for-gestational-age births and low Apgar score (<7) did not differ significantly between groups.Conclusions and relevanceLive births to AYA cancer survivors may have an increased risk of preterm birth and low birth weight, suggesting that additional surveillance of pregnancies in this population is warranted. Our findings may inform the reproductive counseling of female AYA cancer survivors.

Project description:Hematopoietic cell transplantation (HCT) is physically and psychologically challenging, potentially exposing patients to quality-of-life (QoL) impairments. Adolescent and young adults (AYAs, aged 15 to 39 years) are a vulnerable cohort facing multiple hurdles due to dynamic changes in several aspects of their lives. The AYA population may be particularly prone to QoL issues during HCT. We hypothesized that due to the unique psychosocial challenges faced by AYAs, they would have an inferior quality of life. We studied QoL differences between AYA (aged 15 to 39 years) and older adult (aged 40 to 60 years) allogeneic HCT recipients before and after HCT. Additionally, we determined if pre-HCT QoL for AYA transplant recipients changed over time. QoL data were collected prospectively before and after transplant on 431 recipients aged 15 to 60 years from June 2003 through December 2017 using the Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT) questionnaire. Repeated-measures analysis of variance was used to assess differences among age groups. Pearson correlation (r) was used to determine if baseline QoL had improved after HCT from June 2003 through December 2017 in the AYA cohort. QoL did not differ among younger AYAs, older AYAs, or older adults at any time in the first year after allogeneic HCT. At 1 year post-HCT, total FACT-BMT score and all FACT-BMT domains except physical well-being improved from pre-HCT in all age groups. From 2003 to 2017, AYA allogeneic recipients experienced modest improvement in additional concerns (r = 0.26, P = .003), trial outcome index (r = 0.23, P = .008), and total FACT-BMT score (r = 0.19, P = .031), although no improvements were seen in physical, social, emotional, or functional well-being. Contrary to our hypothesis, we found that QoL in the AYA population is similar to that of older adults before and after HCT. Improvements in QoL of AYA allogeneic patients since 2003 were driven by the additional concerns domain, which addresses multiple psychosocial aspects such as vocation, hobbies, and acceptance of illness. Continued efforts to tailor treatment and support for AYA HCT recipients is critical to improving QoL outcomes.

Dataset Information

Exploring the interconnectedness between health-related quality of life factors among long-term adolescent and young adult cancer survivors (AYAs): a network analysis.

Purpose

Methods

Results

Conclusion

Publications

Exploring the interconnectedness between health-related quality of life factors among long-term adolescent and young adult cancer survivors (AYAs): a network analysis.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets