Cancers

Editorial

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7 pages, 216 KiB

Open AccessEditorial

New Frontiers in Child, Adolescent and Young Adult Psycho-Oncology Survivorship Care

by Ursula M. Sansom-Daly, Jordana K. McLoone, Lauren Touyz and Christina Signorelli

Cancers 2022, 14(18), 4335; https://doi.org/10.3390/cancers14184335 - 6 Sep 2022

Cited by 1 | Viewed by 1762

Abstract

The landscape of cancer survivorship has changed considerably from Fitzhugh Mullan’s conceptualization of the three sequential phases or ‘seasons of survival’ that an individual might expect to pass through, from the acute (cancer diagnosis and treatment), extended (the period following treatment), and permanent [...] Read more.

The landscape of cancer survivorship has changed considerably from Fitzhugh Mullan’s conceptualization of the three sequential phases or ‘seasons of survival’ that an individual might expect to pass through, from the acute (cancer diagnosis and treatment), extended (the period following treatment), and permanent (survivorship, aligned with cure) survivorship phases [...] Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

Research

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22 pages, 1245 KiB

Open AccessArticle

Adapting the Voicing My CHOiCES Advance Care Planning Communication Guide for Australian Adolescents and Young Adults with Cancer: Appropriateness, Acceptability, and Considerations for Clinical Practice

by Ursula M. Sansom-Daly, Megan Zhang, Holly E. Evans, Jordana McLoone, Lori Wiener, Richard J. Cohn, Antoinette Anazodo, Pandora Patterson and Claire E. Wakefield

Cancers 2023, 15(7), 2129; https://doi.org/10.3390/cancers15072129 - 3 Apr 2023

Cited by 1 | Viewed by 2814

Abstract

Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate [...] Read more.

Background: Adolescents and young adults (AYAs) with life-threatening illnesses need support to discuss and voice their end-of-life choices. Voicing My CHOiCES (VMC) is a research-informed American advanced care planning guide designed to help facilitate these difficult discussions. This multi-perspective study aimed to evaluate its appropriateness, acceptability, and clinical considerations for Australian AYAs with cancer. Procedure: Forty-three participants including AYAs who were either undergoing or recently completed cancer treatment, their parents, and multidisciplinary health professionals assessed the acceptability of each VMC section quantitatively (appropriateness—yes/no, helpfulness and whether content caused stress—1 = not at all, to 5 = very) and qualitatively (sources of stress). AYAs also assessed the benefit and burden of completing several sections of the document, to inform clinical considerations. We conducted a mixed-methods analysis to obtain descriptive statistics and to identify prominent themes. Results: In terms of acceptability, almost all participants (96%) rated VMC as appropriate overall. Perceived helpfulness to their situation (to themselves/their child/their patients), to others, and stressfulness were rated, on average, as 4.1, 4.0, and 2.7/5, respectively. Stress was attributed to individual and personal factors, as well as interpersonal worries. All sections were considered more beneficial than burdensome, except for the Spiritual Thoughts section (Section 6). Conclusions: While VMC is an acceptable advance care planning guide for AYAs with cancer, changes to the guide were suggested for the Australian context. Health professionals implementing VMC will need to address and mitigate anticipated sources of stress identified here. Future research evaluating the impact of a new culturally adapted Australian VMC guide is an important next step. Finally, the clinical implications of the present study are suggested. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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21 pages, 2925 KiB

Open AccessArticle

Quality of Life (QoL) of Children and Adolescents Participating in a Precision Medicine Trial for High-Risk Childhood Cancer

by Kate Hetherington, Claire E. Wakefield, Kavitha P. K. Kunalan, Mark W. Donoghoe, Brittany C. McGill, Joanna E. Fardell, Rebecca Daly, Rebecca J. Deyell and David S. Ziegler

Cancers 2022, 14(21), 5310; https://doi.org/10.3390/cancers14215310 - 28 Oct 2022

Cited by 6 | Viewed by 2424

Abstract

Precision medicine is changing the treatment of childhood cancer globally, however little is known about quality of life (QoL) in children and adolescents participating in precision medicine trials. We examined QoL among patients enrolled in PRISM, the Zero Childhood Cancer Program’s precision medicine [...] Read more.

Precision medicine is changing the treatment of childhood cancer globally, however little is known about quality of life (QoL) in children and adolescents participating in precision medicine trials. We examined QoL among patients enrolled in PRISM, the Zero Childhood Cancer Program’s precision medicine trial for high-risk childhood cancer. We assessed patient QoL via self-report (aged 12–17 years) and parent-proxy (aged 4–17 years) completion of the EQ-5D-Y. We analysed data using descriptive statistics and regression models. Patients (n = 23) and parents (n = 136) provided data after trial enrolment and following receipt of trial results and treatment recommendations (n = 8 patients, n = 84 parents). At enrolment, most patients were experiencing at least some difficulty across more than one QoL domain (81% patient self-report, 83% parent report). We did not find strong evidence of a change in QoL between timepoints, or of demographic or disease factors that predicted parent-reported patient QoL (EQ-VAS) at enrolment. There was strong evidence that receiving a treatment recommendation but not a change in cancer therapy was associated with poorer parent-reported patient QoL (EQ-VAS; Mdiff = −22.5, 95% CI: −36.5 to −8.5, p = 0.006). Future research needs to better understand the relationship between treatment decisions and QoL and would benefit from integrating assessment of QoL into routine clinical care. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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24 pages, 1698 KiB

Open AccessArticle

Using Intervention Mapping to Develop an Education and Career Support Service for Adolescents and Young Adults Diagnosed with Cancer: Identification of the Contextual Factors That Influence Participation in Education and Employment

by Esther L. Davis, Kristina S. Clarke, Pandora Patterson and Jennifer Cohen

Cancers 2022, 14(19), 4590; https://doi.org/10.3390/cancers14194590 - 22 Sep 2022

Cited by 2 | Viewed by 1827

Abstract

Adolescents and young adults (AYAs) diagnosed with cancer experience disrupted engagement in education and employment, which can have profound and long-term impacts on their quality of life. It is therefore vital to offer AYAs access to tailored, evidence-based services to help them to [...] Read more.

Adolescents and young adults (AYAs) diagnosed with cancer experience disrupted engagement in education and employment, which can have profound and long-term impacts on their quality of life. It is therefore vital to offer AYAs access to tailored, evidence-based services to help them to achieve their education and employment goals. However, few such services exist for this population. This paper presents the results from the first step in developing an education and career support service for AYAs diagnosed with cancer using Intervention Mapping. This first step involved developing a logic model that describes the influences of health and demographic factors, individual determinants, behaviours, and environmental conditions on AYA participation in education or employment. The logic model was developed by integrating data from an integrative literature review; cross-sectional survey of AYA clients of a community-based organisation; and feedback from a planning group of stakeholders. It is a valuable framework that will be used to direct the focus of the education and career support service for AYAs diagnosed with cancer. More broadly, the logic model has implications for guiding clinical, service, research, and policy improvements for AYA education, employment, and career support, with the aim of improving AYA quality of life. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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13 pages, 1763 KiB

Open AccessArticle

Interactive Education on Sleep Hygiene with a Social Robot at a Pediatric Oncology Outpatient Clinic: Feasibility, Experiences, and Preliminary Effectiveness

by Kelly L. A. van Bindsbergen, Hinke van der Hoek, Marloes van Gorp, Mike E. U. Ligthart, Koen V. Hindriks, Mark A. Neerincx, Tanja Alderliesten, Peter A. N. Bosman, Johannes H. M. Merks, Martha A. Grootenhuis and Raphaële R. L. van Litsenburg

Cancers 2022, 14(15), 3792; https://doi.org/10.3390/cancers14153792 - 4 Aug 2022

Cited by 10 | Viewed by 3215

Abstract

Objectives: Children with cancer often experience sleep problems, which are associated with many negative physical and psychological health outcomes, as well as with a lower quality of life. Therefore, interventions are strongly required to improve sleep in this population. We evaluated interactive education [...] Read more.

Objectives: Children with cancer often experience sleep problems, which are associated with many negative physical and psychological health outcomes, as well as with a lower quality of life. Therefore, interventions are strongly required to improve sleep in this population. We evaluated interactive education with respect to sleep hygiene with a social robot at a pediatric oncology outpatient clinic regarding the feasibility, experiences, and preliminary effectiveness. Methods: Researchers approached children (8 to 12 years old) who were receiving anticancer treatment and who were visiting the outpatient clinic with their parents during the two-week study period. The researchers completed observation forms regarding feasibility, and parents completed the Children’s Sleep Hygiene Scale before and two weeks after the educational regimen. The experiences of children and parents were evaluated in semi-structured interviews. We analyzed open answers by labeling each answer with a topic reflecting the content and collapsed these topics into categories. We used descriptive statistics to describe the feasibility and experiences, and a dependent-samples t-test to evaluate the preliminary effectiveness. Results: Twenty-eight families participated (58% response rate) and all interactions with the robot were completed. The children and parents reported that they learned something new (75% and 50%, respectively), that they wanted to learn from the robot more often (83% and 75%, respectively), and that they applied the sleeping tips from the robot afterwards at home (54%). Regarding the preliminary effectiveness, children showed a statistically significant improvement in their sleep hygiene (p = 0.047, d = 0.39). Conclusions: Providing an educational regimen on sleep hygiene in a novel, interactive way by using a social robot at the outpatient clinic seemed feasible, and the children and parents mostly exhibited positive reactions. We found preliminary evidence that the sleep hygiene of children with cancer improved. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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15 pages, 759 KiB

Open AccessArticle

Insomnia Symptoms and Daytime Fatigue Co-Occurrence in Adolescent and Young Adult Childhood Cancer Patients in Follow-Up after Treatment: Prevalence and Associated Risk Factors

by Shosha H. M. Peersmann, Martha A. Grootenhuis, Annemieke van Straten, Wim J. E. Tissing, Floor Abbink, Andrica C. H. de Vries, Jacqueline Loonen, Helena J. H. van der Pal, Gertjan J. L. Kaspers and Raphaële R. L. van Litsenburg

Cancers 2022, 14(14), 3316; https://doi.org/10.3390/cancers14143316 - 7 Jul 2022

Cited by 6 | Viewed by 2269

Abstract

Insomnia symptoms and daytime fatigue commonly occur in pediatric oncology, which significantly impact physical and psychosocial health. This study evaluated the prevalence of insomnia only, daytime fatigue only, the co-occurrence of insomnia–daytime fatigue symptoms, and associated risk factors. Childhood cancer patients (n [...] Read more.

Insomnia symptoms and daytime fatigue commonly occur in pediatric oncology, which significantly impact physical and psychosocial health. This study evaluated the prevalence of insomnia only, daytime fatigue only, the co-occurrence of insomnia–daytime fatigue symptoms, and associated risk factors. Childhood cancer patients (n = 565, 12–26 years old, ≥6 months after treatment) participated in a national, cross-sectional questionnaire study, measuring insomnia symptoms (ISI; Insomnia Severity Index) and daytime fatigue (single item). Prevalence rates of insomnia and/or daytime fatigue subgroups and ISI severity ranges were calculated. Multinomial regression models were applied to assess risk factors. Most patients reported no insomnia symptoms or daytime fatigue (61.8%). In the 38.2% of patients who had symptoms, 48.1% reported insomnia and daytime fatigue, 34.7% insomnia only, and 17.1% daytime fatigue only. Insomnia scores were higher in patients with insomnia–daytime fatigue compared to insomnia only (p < 0.001). Risk factors that emerged were: female sex and co-morbidities (all), shorter time after treatment and bedtime gaming (insomnia only), young adulthood (insomnia–fatigue/fatigue only), needing someone else to fall asleep and inconsistent wake times (both insomnia groups), lower educational level and consistent bedtimes (insomnia–fatigue). Insomnia symptoms and daytime fatigue are common and often co-occur. While current fatigue guidelines do not include insomnia symptoms, healthcare providers should inquire about insomnia as this potentially provides additional options for treatment and prevention. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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12 pages, 402 KiB

Open AccessArticle

Feasibility and Acceptability of Bright IDEAS-Young Adults: A Problem-Solving Skills Training Intervention

by Adrienne S. Viola, Gary Kwok, Kristine Levonyan-Radloff, Sharon L. Manne, Robert B. Noll, Sean Phipps, Olle Jane Z. Sahler and Katie A. Devine

Cancers 2022, 14(13), 3124; https://doi.org/10.3390/cancers14133124 - 25 Jun 2022

Cited by 5 | Viewed by 2564

Abstract

Background: Young adults with cancer are a vulnerable group with unique emotional, social, and practical needs. There is a lack of evidence-based interventions to address their needs and to foster skills that could increase their capacity to cope. Bright IDEAS is a problem-solving [...] Read more.

Background: Young adults with cancer are a vulnerable group with unique emotional, social, and practical needs. There is a lack of evidence-based interventions to address their needs and to foster skills that could increase their capacity to cope. Bright IDEAS is a problem-solving skills training intervention that has demonstrated efficacy in improving people’s problem-solving ability and reducing distress among caregivers of children with cancer. This study evaluated the feasibility and acceptability of Bright IDEAS adapted for young adults (Bright IDEAS-YA). Methods: Forty young adults recently diagnosed with cancer were enrolled in a single arm feasibility study. Results: Feasibility was demonstrated by the adequate enrollment (67.8%), retention (80.0%), and participants’ adherence to the intervention (average of 5.2 out of 6 sessions completed). Participants reported satisfaction with the intervention. Qualitative feedback identified the systematic approach to problem-solving and interaction with the trainer as strengths of the intervention. Participants demonstrated improvements in problem-solving skills and symptoms of depression and anxiety. Conclusions: In conclusion, the results support the feasibility of the intervention and an adequately powered randomized controlled trial is needed to determine the efficacy of the intervention on psychosocial outcomes. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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21 pages, 1061 KiB

Open AccessArticle

The Influence of Socioeconomic Status (SES) and Processing Speed on the Psychological Adjustment and Wellbeing of Pediatric Brain Tumor Survivors

by Maria Chiara Oprandi, Viola Oldrati, Claudia Cavatorta, Lorenza Gandola, Maura Massimino, Alessandra Bardoni and Geraldina Poggi

Cancers 2022, 14(13), 3075; https://doi.org/10.3390/cancers14133075 - 23 Jun 2022

Cited by 8 | Viewed by 2488

Abstract

(1) Background: The relationship between processing speed (PS) and psychological adjustment in the healthy population is well established, as is that between low socio-economic status (SES) and psychological distress. While PS is one of the most impaired functions in pediatric brain tumor survivors [...] Read more.

(1) Background: The relationship between processing speed (PS) and psychological adjustment in the healthy population is well established, as is that between low socio-economic status (SES) and psychological distress. While PS is one of the most impaired functions in pediatric brain tumor survivors (PBTSs), previous research has demonstrated that low SES may be a predictor of increased psychosocial risk in PBTSs. Given the psychological adjustment difficulties observed in PBTS, in the current study we aimed to explore the relationship between SES and psychological functioning, considering the contribution of PS as a mediator. (2) Methods: demographic and clinical data of 80 children (age range: 4–17 y.o.) were retrospectively collected. Psychological measures were the parent-compiled versions of the Child Behavioral Checklist (CBCL) and the Strengths and Difficulties Questionnaire (SDQ). Mediation analysis models were performed on psychological measures with and without the inclusion of covariates. (3) Results: The influence of SES on the CBCL total index was mediated by PS. Furthermore, PS was found to have a mediating effect on the relationship between SES and internalizing problems but not on the relationship between SES and externalizing problems. (4) Conclusions: The results suggest that PS may be a rehabilitation target for the prevention of psychological distress and should be addressed especially for PBTSs who live in a disadvantaged situation. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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20 pages, 340 KiB

Open AccessArticle

Process Evaluation of a Sport-Based Supportive Care Intervention for Testicular Cancer Survivors: A Mixed Methods Study

by Anika R. Petrella, Catherine M. Sabiston, Roxy H. O’Rourke, Daniel Santa Mina, Robert J. Hamilton and Andrew G. Matthew

Cancers 2022, 14(11), 2800; https://doi.org/10.3390/cancers14112800 - 4 Jun 2022

Cited by 2 | Viewed by 2665

Abstract

Testicular cancer survivors report unmet supportive care needs that are associated with poorer physical and mental health, yet engagement in traditional supportive care is low. The Ball’s in Your Court intervention was designed to engage testicular cancer survivors in supportive care by leveraging [...] Read more.

Testicular cancer survivors report unmet supportive care needs that are associated with poorer physical and mental health, yet engagement in traditional supportive care is low. The Ball’s in Your Court intervention was designed to engage testicular cancer survivors in supportive care by leveraging a community-based sport and exercise model. Age-appropriate, gender-sensitized, and disease specific elements were reflected in the intervention design, setting, content, and delivery. The intervention included five weekly health promotion sessions among a group of testicular cancer survivors. The purpose of this study was to explore the intervention’s (i) feasibility and acceptability, (ii) effects on testicular cancer survivors’ perceived health, and (iii) gain feedback for intervention refinement. A total of 10 testicular cancer survivors participated in the pilot and completed questionnaires on demographics, cancer history, perceived health, and physical activity behavior at baseline (pre-intervention) and perceived health and satisfaction with intervention components (post-intervention). Open-ended feedback surveys were collected after each weekly session and researcher field notes were recorded by three members of the study team. One month following the intervention, a focus group was conducted with intervention participants. All participants were satisfied with the intervention. Content analysis of the qualitative data supported intervention acceptability. Visual analysis conducted at the individual level indicated that perceived health either remained stable or improved from pre- to post-intervention. The Ball’s in Your Court intervention provides a feasible and acceptable approach for the delivery of supportive care aimed at improving testicular cancer survivors’ health and wellness. Recommendations for intervention refinement were provided and require future examination. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

13 pages, 810 KiB

Open AccessArticle

Parental Sleep, Distress, and Quality of Life in Childhood Acute Lymphoblastic Leukemia: A Longitudinal Report from Diagnosis up to Three Years Later

by Niki Rensen, Lindsay Steur, Martha Grootenhuis, Jos Twisk, Natasha van Eijkelenburg, Inge van der Sluis, Natasja Dors, Cor van den Bos, Wim Tissing, Gertjan Kaspers and Raphaële van Litsenburg

Cancers 2022, 14(11), 2779; https://doi.org/10.3390/cancers14112779 - 3 Jun 2022

Cited by 6 | Viewed by 2283

Abstract

This study assessed sleep, distress and quality of life (QoL) in parents of children with acute lymphoblastic leukemia (ALL) from diagnosis to three years after, and the impact of sleep and distress on QoL. Additionally, this study explored determinants of sleep and distress. [...] Read more.

This study assessed sleep, distress and quality of life (QoL) in parents of children with acute lymphoblastic leukemia (ALL) from diagnosis to three years after, and the impact of sleep and distress on QoL. Additionally, this study explored determinants of sleep and distress. Parents completed the MOS Sleep, Distress Thermometer for Parents and SF-12 at four-five months (T0), one year (T1), two years (T2), and three years (T3) after diagnosis. The course of outcomes and longitudinal impact of clinically relevant sleep problems (>1SD above reference’s mean) and clinical distress (score ≥ 4) on QoL Z-scores were assessed with linear mixed-models. Determinants of sleep and distress were assessed with multinomial mixed-models. Parents (81% mothers) of 139 patients (60% males; 76% medium-risk (MR)) participated. Distress and QoL gradually restored from T0 to T3. Sleep problems improved, but were still elevated at T3: 33% reported clinically relevant sleep problems, of which 48% in concurrence with distress. Over time, presence of sleep problems or distress led to lower mental QoL Z-scores (SD-score −0.2 and −0.5, respectively). Presence of both led to a cumulatively lower Z-score (SD-score −1.3). Parents in the latter group were more likely to report insufficient social support, parenting problems, a chronic illness, pain for their child, having a child with MR-ALL, and being closer to diagnosis. In conclusion, parental well-being improves over time, yet sleep problems persist. In combination with ongoing distress, they cumulatively affect QoL. Special attention should be given to parents who are vulnerable to worse outcomes. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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19 pages, 655 KiB

Open AccessArticle

Mindfulness in Adolescent and Young Adult (AYA) Patients Undergoing Hematopoietic Stem Cell Transplantation (HSCT): A Qualitative Study

by Sylvia L. Crowder, Rachel Sauls, Laura Redwine, Michael Nieder, Omar Albanyan, Hassaan Yasin, Farhad Khimani and Marilyn Stern

Cancers 2022, 14(11), 2760; https://doi.org/10.3390/cancers14112760 - 2 Jun 2022

Cited by 4 | Viewed by 2539

Abstract

Previous adolescent and young adult (AYA) research suggests patients undergoing hematopoietic stem cell transplantation (HSCT) experience severe physiological stress. The goal of this study was to identify unmet needs, interests, and preferences for mindfulness to inform the development of a mindfulness-based stress reduction [...] Read more.

Previous adolescent and young adult (AYA) research suggests patients undergoing hematopoietic stem cell transplantation (HSCT) experience severe physiological stress. The goal of this study was to identify unmet needs, interests, and preferences for mindfulness to inform the development of a mindfulness-based stress reduction intervention. Semi-structured interviews were conducted at three time points: prior to (n = 20), immediately after (n = 13), and three months post HSCT (n = 16) in the same AYA patients. Interviews assessed stress reduction strategies used, interest in mindfulness, and current quality of life. Three major thematic categories emerged from interview data across all time points: Concerns, Coping Strategies, and Mindfulness Activities. Prior to HSCT, two additional themes emerged including: Hope for the Future and Getting the Body Moving-Physical Activity. Most participants were not familiar with the term “mindfulness” prior to HSCT; but after being provided the definition of mindfulness, participants expressed interest in an online mindfulness-based intervention (e.g., ZOOM), stating: “I think it’s necessary” and “It would definitely be useful”. Participants suggested an intervention immediately following HSCT may decrease isolation concerns stating: “[in the hospital] You kind of feel like a hamster in a cage” and “you obviously have a lot of time to just be sitting by yourself in a hospital room”. The results suggest that a mindfulness-based online intervention is of interest to AYA HSCT patients and may be beneficial in decreasing physiological stress and improving quality of life. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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14 pages, 421 KiB

Open AccessArticle

Who Knows? Information Received, and Knowledge about, Cancer, Treatment and Late Effects in a National Cohort of Long-Term Childhood, Adolescent and Young Adult Cancer Survivors

by Micol E. Gianinazzi, Cecilie E. Kiserud, Ellen Ruud and Hanne C. Lie

Cancers 2022, 14(6), 1534; https://doi.org/10.3390/cancers14061534 - 16 Mar 2022

Cited by 6 | Viewed by 2795

Abstract

Background: Knowledge of medical history and late effects is central in modern survivorship management, especially for long-term childhood, adolescent and young adult cancer survivors’ (CAYACS) with long life expectancy rates and high risks of late effects. Identifying information and knowledge gaps is, therefore, [...] Read more.

Background: Knowledge of medical history and late effects is central in modern survivorship management, especially for long-term childhood, adolescent and young adult cancer survivors’ (CAYACS) with long life expectancy rates and high risks of late effects. Identifying information and knowledge gaps is, therefore, important. As part of the population-based NOR-CAYACS study, we investigated the following: (1) written information received about their disease and treatment, and any information about late effects; (2) satisfaction with this information and associated factors; (3) knowledge about late effects and factors associated with low knowledge of specific late effects. Material and methods: A questionnaire-based survey (Nor-CAYACS) was mailed to 5361 CAYACS (childhood cancers, breast and colorectal cancer, acute lymphatic leukemia, non-Hodgkin lymphoma and malignant melanoma) identified by the Cancer Registry of Norway (CRN). Of these, 2018 answered questions about disease and late effects information and knowledge. Exposure variables were extracted from the questionnaire and CRN. Unfortunately, it was not possible to stratify by treatment in the analyses. We ran descriptive statistics for comparisons and logistic regressions to identify factors associated with outcomes of interest. Results: Overall, 50% to 60% of survivors reported not having received written information about their disease and treatment, or any information about late effects. There was a large variation in reported knowledge across 17 late effects. Lower levels of knowledge were associated with male sex, lower education and poorer health literacy in multivariable regression models. Conclusions: Knowledge of cancer history and risks of late effects is essential for effective self-management, yet significant information and knowledge gaps were reported in this population-based sample of long-term CAYACS. Systematic approaches to making (up-to-date) information available to long-term survivors are needed to ensure that information does not get lost in medical and life transitions. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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15 pages, 1276 KiB

Open AccessArticle

‘Let Me Know If There’s Anything I Can Do for You’, the Development of a Mobile Application for Adolescents and Young Adults (AYAs) with Cancer and Their Loved Ones to Reconnect after Diagnosis

by Sophia H. E. Sleeman, Milou J. P. Reuvers, Eveliene Manten-Horst, Bram Verhees, Pandora Patterson, Silvie H. M. Janssen and Olga Husson

Cancers 2022, 14(5), 1178; https://doi.org/10.3390/cancers14051178 - 24 Feb 2022

Cited by 5 | Viewed by 2926

Abstract

Adolescent and young adult (AYA) cancer patients report a need for support to stay in contact with loved ones after diagnosis. In response to this the Dutch AYA ‘Young & Cancer’ Care Network co-created the mobile application ‘AYA Match’. This study describes the [...] Read more.

Adolescent and young adult (AYA) cancer patients report a need for support to stay in contact with loved ones after diagnosis. In response to this the Dutch AYA ‘Young & Cancer’ Care Network co-created the mobile application ‘AYA Match’. This study describes the cocreational process, the characteristics of the users and their expectations regarding the app. 121 AYA cancer patients and 37 loved ones completed a questionnaire. 68.6% of the loved ones reported ‘staying in contact’ and ‘finding out about the needs and wishes of ‘their AYA’ during this time’ as the main reasons for downloading the application. 41.1% of the AYA cancer patients expected the app to help them communicate to their loved ones what they do or don’t want and need. 60% of the loved ones indicated that they would like to use the application to offer help to ‘their AYA’ with their daily tasks. Patients and their loved ones have similar expectations when it comes to ‘normalizing’ contact, increasing empathy and mutual understanding about needs and emotions. The AYA Match app could be an adequate answer to the issues experienced regarding contact, support and mutual understanding. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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12 pages, 478 KiB

Open AccessArticle

Exploring Posttraumatic Stress Symptoms and Posttraumatic Growth among Children Living beyond Cancer and Their Parents Using an Actor–Partner Interdependence Model

by Amanda Wurz, Michaela Patton, Erin L. Merz, Sharon H. J. Hou, Sara Cho and Fiona Schulte

Cancers 2022, 14(3), 704; https://doi.org/10.3390/cancers14030704 - 29 Jan 2022

Cited by 4 | Viewed by 2203

Abstract

There is a growing focus on describing both negative and positive outcomes in the wake of childhood cancer. The purpose of this study was to describe and explore the relationships between posttraumatic stress symptoms (PTSS) and posttraumatic growth (PTG) among children living beyond [...] Read more.

There is a growing focus on describing both negative and positive outcomes in the wake of childhood cancer. The purpose of this study was to describe and explore the relationships between posttraumatic stress symptoms (PTSS) and posttraumatic growth (PTG) among children living beyond cancer and one of their parents. As part of a larger online survey, 113 children (M_age at time of study = 15.82 (SD = 4.81); M_age at diagnosis = 5.86 (SD = 4.66)) and one of their parents completed questionnaires assessing PTSS and PTG. Descriptive statistics were used to describe the sample and levels of PTSS and PTG. Data were z-transformed and analyzed using bivariate correlations and t-tests. An actor–partner interdependence model (APIM) was used to test whether children’s and their parents’ PTSS was associated with their own PTG (actor effect) and the others’ PTG (partner effect). PTSS was low and PTG was moderate in this sample relative to scale ranges. There were no significant differences between the children’s and their parents’ PTSS (p = 0.535) or PTG (p = 0.534). Results from the APIM showed no significant actor effects (p = 0.185). A significant overall partner effect (p = 0.020) emerged. Lower PTSS for children was associated with greater PTG for their parents (b = −0.29, p = 0.018), but parent’s PTSS was not associated with children’s PTG (p = 0.434). This sample reported similar levels of PTSS and PTG to that which has been reported in the literature. Children and their parents’ scores on PTSS and PTG measures were not significantly different from one another. Children’s PTSS was negatively associated with their parents PTG, illuminating the ways in which PTSS and PTG may be related in the context of childhood cancer. Exploring family-based strategies to reduce PTSS and enhance PTG may be warranted, though further studies are required. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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30 pages, 6491 KiB

Open AccessArticle

Providing Psychological Support to Parents of Childhood Cancer Survivors: ‘Cascade’ Intervention Trial Results and Lessons for the Future

by Claire E. Wakefield, Ursula M. Sansom-Daly, Brittany C. McGill, Kate Hetherington, Sarah J. Ellis, Eden G. Robertson, Mark W. Donoghoe, Maria McCarthy, Lauren Kelada, Afaf Girgis, Madeleine King, Martha Grootenhuis, Antoinette Anazodo, Pandora Patterson, Cherie Lowe, Luciano Dalla-Pozza, Gordon Miles and Richard J. Cohn

Cancers 2021, 13(22), 5597; https://doi.org/10.3390/cancers13225597 - 9 Nov 2021

Cited by 14 | Viewed by 3607

Abstract

We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome [...] Read more.

We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome was parents’ health-related quality of life (PedsQL-Family Impact/EQ-5D-5L) six months post-intervention. Parents also reported their anxiety/depression, parenting self-agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child’s quality of life. Seventy-six parents opted in; 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents’ health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre-enrolment. We used these findings to improve Cascade and will trial the new version in future. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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10 pages, 420 KiB

Open AccessArticle

Concordance of Child Self-Reported and Parent Proxy-Reported Posttraumatic Growth in Childhood Cancer Survivors

by Veronika Koutná, Marek Blatný and Martin Jelínek

Cancers 2021, 13(16), 4230; https://doi.org/10.3390/cancers13164230 - 23 Aug 2021

Cited by 5 | Viewed by 2808

Abstract

This article aimed to analyze concordance of parent- and child-reported child posttraumatic growth (PTG) following pediatric cancer, the influence of the parents’ own level of PTG on the level of concordance and the influence of the parents’ and the child’s own level of [...] Read more.

This article aimed to analyze concordance of parent- and child-reported child posttraumatic growth (PTG) following pediatric cancer, the influence of the parents’ own level of PTG on the level of concordance and the influence of the parents’ and the child’s own level of PTG on the parents’ proxy reports of PTG in the child. The sample included 127 parent–child dyads. The children provided self-reports of PTG and the parents provided reports of their own as well as the child’s PTG. Overall, the results showed poor parent–child agreement on the child PTG, with the parents proxy-reporting higher levels of PTG than the children. The parents’ proxy reports of the child PTG were the most accurate at the lowest levels of the parents’ own level of PTG. The parents’ own level of PTG was a stronger predictor of the parents’ proxy reports than the child self-reported PTG. The results suggest that parents are not very accurate reporters of PTG in the child; therefore, their reports should be completed with child self-reports whenever possible. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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Review

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19 pages, 1311 KiB

Open AccessReview

Emotion Regulation Flexibility and Electronic Patient-Reported Outcomes: A Framework for Understanding Symptoms and Affect Dynamics in Pediatric Psycho-Oncology

by Kasra Mirzaie, Anna Burns-Gebhart, Marcel Meyerheim, Annette Sander and Norbert Graf

Cancers 2022, 14(16), 3874; https://doi.org/10.3390/cancers14163874 - 11 Aug 2022

Cited by 1 | Viewed by 3447

Abstract

Emotion dysregulation is regarded as a driving mechanism for the development of mental health problems and psychopathology. The role of emotion regulation (ER) in the management of cancer distress and quality of life (QoL) has recently been recognized in psycho-oncology. The latest technological [...] Read more.

Emotion dysregulation is regarded as a driving mechanism for the development of mental health problems and psychopathology. The role of emotion regulation (ER) in the management of cancer distress and quality of life (QoL) has recently been recognized in psycho-oncology. The latest technological advances afford ways to assess ER, affective experiences and QoL in child, adolescent and young adult (CAYA) cancer patients through electronic patient-reported outcomes (ePRO) in their daily environment in real-time. Such tools facilitate ways to study the dynamics of affect and the flexibility of ER. However, technological advancement is not risk-free. We critically review the literature on ePRO in cancer existing models of ER in pediatric psycho-oncology and analyze strength, weaknesses, opportunities and threats of ePRO with a focus on CAYA cancer research and care. Supported by personal study-based experiences, this narrative review serves as a foundation to propose a novel methodological and metatheoretical framework based on: (a) an extended notion of ER, which includes its dynamic, adaptive and flexible nature and focuses on processes and conditions rather than fixed categorical strategies; (b) ePRO as a means to measure emotion regulation flexibility and affect dynamics; (c) identifying early warning signals for symptom change via ePRO and building forecasting models using dynamical systems theory. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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Other

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11 pages, 701 KiB

Open AccessStudy Protocol

Evaluating the Feasibility and Acceptability of an Artificial-Intelligence-Enabled and Speech-Based Distress Screening Mobile App for Adolescents and Young Adults Diagnosed with Cancer: A Study Protocol

by Anao Zhang, Aarti Kamat, Chiara Acquati, Michael Aratow, Johnny S. Kim, Adam S. DuVall and Emily Walling

Cancers 2022, 14(4), 914; https://doi.org/10.3390/cancers14040914 - 12 Feb 2022

Cited by 9 | Viewed by 4285

Abstract

Adolescents and young adults (AYAs) diagnosed with cancer are an age-defined population, with studies reporting up to 45% of the population experiencing psychological distress. Although it is essential to screen and monitor for psychological distress throughout AYAs’ cancer journeys, many cancer centers fail [...] Read more.

Adolescents and young adults (AYAs) diagnosed with cancer are an age-defined population, with studies reporting up to 45% of the population experiencing psychological distress. Although it is essential to screen and monitor for psychological distress throughout AYAs’ cancer journeys, many cancer centers fail to effectively implement distress screening protocols largely due to busy clinical workflow and survey fatigue. Recent advances in mobile technology and speech science have enabled flexible and engaging methods to monitor psychological distress. However, patient-centered research focusing on these methods’ feasibility and acceptability remains lacking. Therefore, in this project, we aim to evaluate the feasibility and acceptability of an artificial intelligence (AI)-enabled and speech-based mobile application to monitor psychological distress among AYAs diagnosed with cancer. We use a single-arm prospective cohort design with a stratified sampling strategy. We aim to recruit 60 AYAs diagnosed with cancer and to monitor their psychological distress using an AI-enabled speech-based distress monitoring tool over a 6 month period. The primary feasibility endpoint of this study is defined by the number of participants completing four out of six monthly distress assessments, and the acceptability endpoint is defined both quantitatively using the acceptability of intervention measure and qualitatively using semi-structured interviews. Full article

(This article belongs to the Special Issue Recent Advances in Pediatric, Adolescent and Young Adult (AYA) Psycho-Oncology)

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