A Scoping Review Exploring Access to Survivorship Care for Childhood, Adolescent, and Young Adult Cancer Survivors: How Can We Optimize Care Pathways?

Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of developing late effects associated with their cancer and its treatment. Survivors' engagement with recommended follow-up care to minimize these risks is suboptimal, with many barriers commonly reported. This scoping review aims to summarize the barriers to accessing follow-up care, using the dimensions of Levesque's framework for accessing healthcare. We retrieved quantitative studies addressing barriers and facilitators to accessing survivorship care in CAYA survivors from PubMed, EMBASE and CINAHL. Data was categorized into the five healthcare access dimensions outlined in Levesque's framework: i) approachability, ii) acceptability, iii) availability and accommodation, iv) affordability, and v) appropriateness. We identified 27 quantitative studies in our review. Commonly reported barriers to accessing care included a lack of survivor and provider knowledge of cancer survivorship, poor health beliefs, low personal salience to engage in follow-up care, high out-of-pocket costs and survivors living long distances from clinical services. Many studies reported increased barriers to care during the transition from paediatric to adult-oriented healthcare services, including a lack of developmentally appropriate services, lack of appointment reminders, and a poorly defined transition process. Healthcare-related self-efficacy was identified as an important facilitator to accessing follow-up care. The transition from pediatric to adult-oriented healthcare services is a challenging time for childhood, adolescent, and young adult cancer survivors. Optimizing CAYAs' ability to access high-quality survivorship care thus requires careful consideration of the quality and acceptability of services, alongside financial and physical/practical barriers (eg distance from available services, appointment-booking mechanisms). Levesque's model highlighted several areas where evidence is well established (eg financial barriers) or lacking (eg factors associated with engagement in follow-up care) which are useful to understand barriers and facilitators that impact access to survivorship for CAYA cancer survivors, as well as guiding areas for further evaluation

A keratin scaffold regulates epidermal barrier formation, mitochondrial lipid composition, and activity.

Keratin intermediate filaments (KIFs) protect the epidermis against mechanical force, support strong adhesion, help barrier formation, and regulate growth. The mechanisms by which type I and II keratins contribute to these functions remain incompletely understood. Here, we report that mice lacking all type I or type II keratins display severe barrier defects and fragile skin, leading to perinatal mortality with full penetrance. Comparative proteomics of cornified envelopes (CEs) from prenatal KtyI(-/-) and KtyII(-/-)(K8) mice demonstrates that absence of KIF causes dysregulation of many CE constituents, including downregulation of desmoglein 1. Despite persistence of loricrin expression and upregulation of many Nrf2 targets, including CE components Sprr2d and Sprr2h, extensive barrier defects persist, identifying keratins as essential CE scaffolds. Furthermore, we show that KIFs control mitochondrial lipid composition and activity in a cell-intrinsic manner. Therefore, our study explains the complexity of keratinopathies accompanied by barrier disorders by linking keratin scaffolds to mitochondria, adhesion, and CE formation

International Survey of Psychosocial Care for Cancer Survivors in Low-/Middle- and High-Income Countries: Current Practices, Barriers, and Facilitators to Care.

PurposeThe number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs).MethodsThe International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level.ResultsTwo hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%).ConclusionThe psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels

Improving follow-up care for long term survivors of childhood cancer: A new model of care

Childhood cancer survivors are at risk of treatment-related health complications including second cancers and late mortality, requiring surveillance and management. Using a mixed-methods, multi-perspective approach, this body of work aimed to develop a new model of care for optimal follow-up of survivors. In Chapter 2, I outlined key survivorship issues including survivors' long-term medical (e.g. second cancers, cardiac complications, infertility) and psychosocial (poor quality of life, vocational challenges) needs. In Chapter 3, I systematically reviewed the international literature showing that follow-up care engagement improves survivors' knowledge about their cancer history, increases surveillance and late effects detected, and decreases emergency department visits and hospitalisations. In an audit of all 11 Australian and New Zealand survivorship clinics (Chapter 4), I interviewed 19 lead oncologists and nurse consultants who shared their perceived strengths and challenges of current binational survivorship practices. This audit revealed no clearly endorsed model of care, inadequate funding and staffing, and inconsistent practices binationally. I explored predictors of general practitioners (GPs) participation in qualitative research (Chapter 5), based on my experiences recruiting 51 GPs for interviews investigating their role in delivering childhood cancer survivorship care. In Chapter 6, I explored families' confidence in GPs, and GPs' confidence in caring for this population. Many families lacked confidence in GPs to deliver childhood cancer survivorship care. GPs were willing and confident in delivering follow-up care, yet this appeared to be contingent upon increased - and prescriptive - communication between primary and tertiary providers. In a mixed-method study of 633 survivors (Chapter 7), I explored survivor-reported barriers to accessing follow-up care and preferences for the delivery of care. Most survivors preferred an oncologist-led model and reported logistical (e.g. distance, costs) and personal (e.g. wanting to 'get on' with life) barriers to care. Based on the findings of these studies, I proposed a new nurse-led, distance-delivered, intervention called 'Re-engage'. In Chapter 8, I described Re-engage, which aims to empower disengaged survivors (i.e. not receiving cancer-related care). Innovative solutions such as Re-engage are needed to promote engagement in follow-up care and help survivors to live to their fullest potential

Models of Care and Advanced Practice Nurse Role in caring for children and adolescents with a cancer predisposition syndrome: a scoping review protocol

Abstract Objective: This scoping review will examine the literature describing models of care, service provisions, barriers and facilitators to care, future direction and gaps in care delivery for children/adolescents with a cancer predisposition syndrome (CPS). It will also explore how advanced practice nurses contribute to the delivery of care for children/adolescents with a CPS. Introduction: Cancer remains a leading cause of death in children/adolescents. Pediatric cancer genetics clinics proactively aim for early diagnosis or prevention of cancer in individuals with a genetic cancer risk. Additionally, the holistic wellbeing of individuals requires a multidisciplinary team, including nurses, to manage their complex healthcare needs. Cancer genetics is a rapidly evolving field requiring novel approaches to ensure optimal healthcare is delivered. Gaps are emerging in service delivery and nurses have the potential to meet some of these needs. Inclusion criteria: This review will consider both gray and white literature exploring models of care, aspects of service delivery and the role of the nurse in pediatric cancer genetics clinics. Literature published in English from 1991 will be considered. Methods: This scoping review will follow the JBI methodology for scoping reviews. The review will include searches in MEDLINE, Embase and CINAHL Complete. Gray literature searches will be conducted in OAIster and SSRN. Websites of hospitals in USA and UK with large pediatric cancer centres will be interrogated. Two reviewers will screen titles, abstracts, and full-text articles. An extraction table will be used to extract relevant data from all included articles and to facilitate data analysis. Results will be presented in narrative and tabular form. Keywords: Pediatrics; cancer predisposition syndrome; nursing; scoping review; service deliver

Pilot testing “Teach Ted”: A digital application for children undergoing blood tests and their parents

Objective: In this pilot study, we evaluated the acceptability and preliminary evidence of the impact of a new educational mobile application, “Teach Ted”, for children undergoing blood tests. Methods: Parents of children (4–10 years) completed questionnaires on anxiety and pain before their child had a blood test, and after using Teach Ted and receiving their blood test. Health professionals at each patient's blood test (e.g. technician/nurse) completed questionnaires on patient outcomes and procedure-related outcomes (e.g. time taken). Results: Nine parents and eight health professionals participated. All but one parent (n = 8/9) reported Teach Ted was useful. Seventy-eight percent (n = 7/9) reported they would use Teach Ted again. All health professionals who completed the acceptability measure (n = 3/3) strongly agreed that Teach Ted was relevant/helpful. Many parents perceived Teach Ted helped reduce their/child's anxiety (n = 3/5, 60% and n = 4/6, 67% respectively), although child's pain and child's/parent's anxiety remained similar before and after using Teach Ted (all p > 0.05). The average blood test duration was 7.6 min (range ≤1 to 22), which health professionals (n = 3/3) reported was not elongated by offering Teach Ted. Conclusions: Participants reported that Teach Ted was acceptable. Further evaluation of Teach Ted's impact on patient's outcomes are needed. Innovation: Teach Ted is an innovative mobile application with potential to educate young children about their upcoming procedure and mitigate negative outcomes

Sleep disturbances in childhood cancer survivors [letter to the editor]

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Understanding the dual role of clinician-scientists in cancer clinical trials: a scoping review protocol

ABSTRACT Objectives: This scoping review explores healthcare professionals’ experiences delivering cancer-related clinical trials, including how ‘research’ and ‘clinical practice’ activities interact and/or interfere with trial delivery and patient care. Introduction: Clinical trial research is essential for advancing the quality of care delivered to cancer patients. Healthcare professionals are the main point of contact for patients participating in a trial and play a critical role in trial conception/design, recruitment, informed consent, intervention delivery, and/or monitoring patient outcomes, whilst concurrently providing good clinical practice. Barriers to undertaking trial research are well documented at patient- and systems-levels, yet little is known about how clinical trial research impacts healthcare professionals. Inclusion criteria: This review will consider articles that meet the following criteria: (1) includes any healthcare professional involved in the delivery of a cancer-related clinical trial, (2) concepts of interest include experiences, attitudes or perceptions reported by healthcare professionals pertaining to trial delivery, and (3) context is within or in relation to the hospital setting. Study sources must be published in a peer-reviewed journal from 2000-present and be English-based or translated. Methods: The search will be conducted in Embase (OVID) and PubMED (MEDLINE) databases. The lead reviewer will screen all articles, while a second reviewer will screen a selection (~20%) of titles/abstracts, and full texts. Study characteristics will be extracted using a data extraction table, and qualitative data will be thematically analysed (via NVivo 14) using a mixed inductive/deductive process informed by implementation science frameworks. Keywords: Clinical trials, oncology, implementation science, clinician-researcher, health-care deliver

The psychosocial experiences and needs of children undergoing surgery and their parents: a systematic review

Introduction:Surgery in children can be difficult for patients and parents. We aimed to summarize pediatric patients' and parents' psychosocial experiences and needs in surgery.Method:We used the Ovid search engine and screened 877 abstracts across three databases to extract data on pediatric patients' and parents' surgical experiences.Results:Our search yielded 11 eligible studies representing 1,307 children undergoing surgery and their parents. Children's adverse experiences included psychological and behavioral changes before, during, and after surgery (e.g., anxiety, eating disturbances). Parents commonly experienced psychological distress. Children's needs related to medical and health care services, whereas parents had high information needs.Discussion:Children's adverse experiences can negatively affect medical outcomes. Children's experiences are inextricably linked to their parents' and can become negatively affected by their parents' adverse experiences. Patients and parents with previous hospitalizations and surgeries had worse surgical experiences, highlighting further research in the context of chronic illness

Strategies to facilitate shared decision-making about pediatric oncology clinical trial enrollment:: a systematic review

Objective: we conducted a systematic review to identify the strategies that have been recommended in the literature to facilitate shared decision-making regarding enrolment in pediatric oncology clinical trials.Methods: we searched seven databases for peer-reviewed literature, published 1990–2017. Of 924 articles identified, 17 studies were eligible for the review. We assessed study quality using the ‘Mixed-Methods Appraisal Tool’. We coded the results and discussions of papers line-by-line using nVivo software. We categorized strategies thematically.Results: five main themes emerged: 1) decision-making as a process, 2) individuality of the process; 3) information provision, 4) the role of communication, or 5) decision and psychosocial support. Families should have adequate time to make a decision. HCPs should elicit parents’ and patients’ preferences for level of information and decision involvement. Information should be clear and provided in multiple modalities. Articles also recommended providing training for healthcare professionals and access to psychosocial support for families.Conclusion: high quality, individually-tailored information, open communication and psychosocial support appear vital in supporting decision-making regarding enrollment in clinical trials. These data will usefully inform future decision-making interventions/tools to support families making clinical trial decisions.Practice implications: a solid evidence-base for effective strategies which facilitate shared decision-making is needed