Goal-directed therapeutic exercise for paediatric posterior fossa brain tumour survivors: a qualitative analysis of experiences.

PURPOSE: To explore child and parent experiences of a 12-week goal-directed therapeutic exercise intervention in paediatric posterior fossa brain tumours survivors and to identify features of the program that influenced program adherence and acceptability. METHODS: Eleven interviews were conducted; five parent-child dyads (mothers = 83%) and one parent only (mean child age = 10.6 ± 3.0 years; 83% male). Posterior fossa brain tumour survivors, who participated in a weekly goal-directed exercise program for 12 weeks, completed semi-structured interviews to discuss their experience of the program. An inductive content analysis was undertaken. Interviews were transcribed, imported into NVivo and independently coded by two reviewers. Code and content categories were iteratively discussed and refined. RESULTS: Five content categories were generated: (1) perceived improvements, (2) program logistics, (3) activity selection, (4) connection with the therapist and (5) options for technology. All participants valued the tailored exercise program and described improvements in movement competence. Children and their parents discussed preferring home- and community-based locations and favoured face-to-face delivery. Occasionally, parents reported difficulty completing the home program due to low child motivation or family time restrictions. Multiple families suggested an interactive digital application would be an effective delivery channel for the supplemental home-based program. CONCLUSION: A goal-directed exercise program delivered at home and in community-based locations was considered valuable and helpful for improving movement competence in paediatric survivors of posterior fossa brain tumour. TRIAL REGISTRATION: ACTRN12619000841178 June 12, 2019.

Psychological, functional and social outcomes in adolescent and young adult cancer survivors over time: A systematic review of longitudinal studies.

OBJECTIVE: Most adolescents and young adults (AYA) can expect to survive a cancer diagnosis and treatment, but all will be left with the potential of long-term negative effects that can impact their ability to reach their full potential in life. Understanding aspects of psychological, functional, and social health and well-being outcomes, is pivotal for optimising long-term well-being. METHODS: We completed a systematic review of longitudinal studies reporting outcomes after anti-cancer treatment for Adolescents and Young Adults diagnosed between the age of 12-29 years according to established systematic review processes. The protocol was registered with PROSPERO (ID: CRD 42020203116). RESULTS: Thirteen reports from 10 studies met eligibility criteria representing 17,645 individuals (50.3% female, mean age at diagnosis 22 years, and 26 years at last, follow up). Eleven reports were from eight quantitative studies that relied on self-report surveys and two were qualitative studies. Psychological outcomes were reported to improve over time, as were functional health outcomes, although reported health behaviours were inconsistent between studies. Neurocognitive deficits were reported to affect the ability to return to work and impacts on fertility and sexuality were sustained over time. CONCLUSIONS: While some outcomes for AYA are reported to improve over time, particularly for physical functioning, and anxiety and depression, the long-term impact of cancer on many important domains remains largely unknown. Specifically, the evidence to understand what changes occur over time, and when, remains underdeveloped.

Interventions for interpersonal communication about end of life care between health practitioners and affected people.

BACKGROUND: Communication about end of life (EoL) and EoL care is critically important for providing quality care as people approach death. Such communication is often complex and involves many people (patients, family members, carers, health professionals). How best to communicate with people in the period approaching death is not known, but is an important question for quality of care at EoL worldwide. This review fills a gap in the evidence on interpersonal communication (between people and health professionals) in the last year of life, focusing on interventions to improve interpersonal communication and patient, family member and carer outcomes. OBJECTIVES: To assess the effects of interventions designed to improve verbal interpersonal communication about EoL care between health practitioners and people affected by EoL. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, PsycINFO, and CINAHL from inception to July 2018, without language or date restrictions. We contacted authors of included studies and experts and searched reference lists to identify relevant papers. We searched grey literature sources, conference proceedings, and clinical trials registries in September 2019. Database searches were re-run in June 2021 and potentially relevant studies listed as awaiting classification or ongoing. SELECTION CRITERIA: This review assessed the effects of interventions, evaluated in randomised and quasi-randomised trials, intended to enhance interpersonal communication about EoL care between patients expected to die within 12 months, their family members and carers, and health practitioners involved in their care. Patients of any age from birth, in any setting or care context (e.g. acute catastrophic injury, chronic illness), and all health professionals involved in their care were eligible. All communication interventions were eligible, as long as they included interpersonal interaction(s) between patients and family members or carers and health professionals. Interventions could be simple or complex, with one or more communication aims (e.g. to inform, skill, engage, support). Effects were sought on outcomes for patients, family and carers, health professionals and health systems, including adverse (unintended) effects. To ensure this review's focus was maintained on interpersonal communication in the last 12 months of life,  we excluded studies that addressed specific decisions, shared or otherwise, and the tools involved in such decision-making. We also excluded studies focused on advance care planning (ACP) reporting ACP uptake or completion as the primary outcome. Finally, we excluded studies of communication skills training for health professionals unless patient outcomes were reported as primary outcomes. DATA COLLECTION AND ANALYSIS: Standard Cochrane methods were used, including dual review author study selection, data extraction and quality assessment of the included studies. MAIN RESULTS: Eight trials were included. All assessed intervention effects compared with usual care. Certainty of the evidence was low or very low. All outcomes were downgraded for indirectness based on the review's purpose, and many were downgraded for imprecision and/or inconsistency. Certainty was not commonly downgraded for methodological limitations. A summary of the review's findings is as follows. Knowledge and understanding (four studies, low-certainty evidence; one study without usable data): interventions to improve communication (e.g. question prompt list, with or without patient and physician training) may have little or no effect on knowledge of illness and prognosis, or information needs and preferences, although studies were small and measures used varied across trials.  Evaluation of the communication (six studies measuring several constructs (communication quality, patient-centredness, involvement preferences, doctor-patient relationship, satisfaction with consultation), most low-certainty evidence): across constructs there may be minimal or no effects of interventions to improve EoL communication, and there is uncertainty about effects of interventions such as a patient-specific feedback sheet on quality of communication.  Discussions of EoL or EoL care (six studies measuring selected outcomes, low- or very low-certainty evidence): a family conference intervention may increase duration of EoL discussions in an intensive care unit (ICU) setting, while use of a structured serious illness conversation guide may lead to earlier discussions of EoL and EoL care (each assessed by one study). We are uncertain about effects on occurrence of discussions and question asking in consultations, and there may be little or no effect on content of communication in consultations.  Adverse outcomes or unintended effects (limited evidence): there is insufficient evidence to determine whether there are adverse outcomes associated with communication interventions  (e.g. question prompt list, family conference, structured discussions) for EoL and EoL care. Patient and/or carer anxiety was reported by three studies, but judged as confounded. No other unintended consequences, or worsening of desired outcomes, were reported. Patient/carer quality of life (four studies, low-certainty evidence; two without useable data): interventions to improve communication may have little or no effect on quality of life.  Health practitioner outcomes (three studies, low-certainty evidence; two without usable data): interventions to improve communication may have little or no effect on health practitioner outcomes (satisfaction with communication during consultation; one study); effects on other outcomes (knowledge, preparedness to communicate) are unknown. Health systems impacts: communication interventions (e.g. structured EoL conversations) may have little or no effect on carer or clinician ratings of quality of EoL care (satisfaction with care, symptom management, comfort assessment, quality of care) (three studies, low-certainty evidence), or on patients' self-rated care and illness, or numbers of care goals met (one study, low-certainty evidence). Communication interventions (e.g. question prompt list alone or with nurse-led communication skills training) may slightly increase mean consultation length (two studies), but other health service impacts (e.g. hospital admissions) are unclear. AUTHORS' CONCLUSIONS: Findings of this review are inconclusive for practice. Future research might contribute meaningfully by seeking to fill gaps for populations not yet studied in trials; and to develop responsive outcome measures with which to better assess the effects of communication on the range of people involved in EoL communication episodes. Mixed methods and/or qualitative research may contribute usefully to better understand the complex interplay between different parties involved in communication, and to inform development of more effective interventions and appropriate outcome measures. Co-design of such interventions and outcomes, involving the full range of people affected by EoL communication and care, should be a key underpinning principle for future research in this area.

Finding a way with words: Delphi study to develop a discussion prompt list for paediatric palliative care.

BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care. AIM: To develop a prompt list suitable for paediatric palliative care. DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups. PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service. RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list. CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.

Normal saline (0.9% sodium chloride) versus heparin intermittent flushing for the prevention of occlusion in long-term central venous catheters in infants and children.

BACKGROUND: Guidelines and clinical practice for the prevention of complications associated with central venous catheters (CVC) around the world vary greatly. Most institutions recommend the use of heparin to prevent occlusion; there is debate, however, regarding the need for heparin and evidence to suggest normal saline (0.9% sodium chloride) may be as effective. The use of heparin is not without risk, may be unnecessary and is also associated with increased cost. This is an update of the review published in 2015. OBJECTIVES: To assess the clinical effects (benefits and harms) of intermittent flushing of normal saline versus heparin to prevent occlusion in long-term central venous catheters in infants and children. SEARCH METHODS: The Cochrane Vascular Information Specialist searched the Cochrane Vascular Specialised Register, CENTRAL, MEDLINE, Embase and CINAHL databases; World Health Organization International Clinical Trials Registry Platform and ClinicalTrials.gov trials register to 9 April 2019. We also undertook reference checking, citation searching and contact with study authors to identify additional studies. SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared the efficacy of intermittent flushing with normal saline versus heparin to prevent occlusion of long-term CVCs in infants and children aged up to 18 years of age. We excluded temporary CVCs and peripherally inserted central catheters (PICC). DATA COLLECTION AND ANALYSIS: Two review authors independently assessed trial inclusion criteria, trial quality and extracted data. We assessed study quality with the Cochrane 'Risk of bias' tool. For dichotomous outcomes, we calculated the rate ratio (RR) and corresponding 95% confidence interval (CI). We pooled data using a random-effects model; and we used GRADE to assess the overall certainty of the evidence supporting the outcomes assessed in this review. MAIN RESULTS: We identified one new study for this update, bringing the total number of included studies to four (255 participants). The four trials directly compared the use of normal saline and heparin; the studies all used different protocols for the intervention and control arms, however, and all used different concentrations of heparin. Different frequencies of flushes were also reported between studies. In addition, not all studies reported on all outcomes. The certainty of the evidence ranged from moderate to very low because there was no blinding; heterogeneity and inconsistency between studies was high; and the CIs were wide. CVC occlusion was assessed in all four trials. We were able to pool the results of two trials for the outcomes of CVC occlusion and CVC-associated blood stream infection. The estimated RR for CVC occlusion per 1000 catheter days between the normal saline and heparin groups was 0.75 (95% CI 0.10 to 5.51; 2 studies, 229 participants; very low certainty evidence). The estimated RR for CVC-associated blood stream infection was 1.48 (95% CI 0.24 to 9.37; 2 studies, 231 participants; low-certainty evidence). The duration of catheter placement was reported to be similar for the two study arms in one study (203 participants; moderate-certainty evidence), and not reported in the remaining studies. AUTHORS' CONCLUSIONS: The review found that there was not enough evidence to determine the effects of intermittent flushing with normal saline versus heparin to prevent occlusion in long-term central venous catheters in infants and children. It remains unclear whether heparin is necessary to prevent occlusion, CVC-associated blood stream infection or effects duration of catheter placement. Lack of agreement between institutions around the world regarding the appropriate care and maintenance of these devices remains.

Registered nurse and midwife experiences of using videoconferencing in practice: A systematic review of qualitative studies.

AIM AND OBJECTIVE: To synthesise evidence of registered nurses' and midwives' experiences with videoconferencing and identify perceptions of the appropriateness, meaningfulness and feasibility of this technology in professional and clinical practice. BACKGROUND: Videoconferencing is a form of telehealth that can facilitate access to high-quality care to improve health outcomes for patients and enable clinicians working in isolation to access education, clinical supervision, peer support and case review. Yet use of videoconferencing has not translated smoothly into routine practice. Understanding the experiences of registered nurses and midwives may provide practitioners, service managers and policymakers with vital information to facilitate use of the technology. DESIGN: A qualitative meta-synthesis of primary qualitative studies undertaken according to Joanna Briggs Institute methodology. METHOD: A systematic search of 19 databases was used to identify qualitative studies that reported on registered nurses' or midwives' experiences with videoconferencing in clinical or professional practice. Two reviewers independently appraised studies, extracted data and synthesised findings to construct core concepts. RESULTS: Nine studies met the criteria for inclusion. Five key synthesised findings were identified: useful on a continuum; broader range of information; implications for professional practice; barriers to videoconferencing; and technical support, training and encouragement. CONCLUSIONS: While videoconferencing offers benefits, it comes with personal, organisational and professional consequences for nurses and midwives. Understanding potential benefits and limitations, training and support required and addressing potential professional implications all influence adoption and ongoing use of videoconferencing. RELEVANCE TO CLINICAL PRACTICE: Registered nurses and midwives are well placed to drive innovations and efficiencies in practice such as videoconferencing. Nursing and midwifery practice must be reframed to adapt to the virtual environment while retaining valued aspects of professional practice. This includes ensuring professional standards keep pace with the development of knowledge in this area and addressing the findings highlighted in this meta-synthesis.

The Development of a Telemedicine Planning Framework Based on Needs Assessment.

Providing equitable access to healthcare services in rural and remote communities is an ongoing challenge that faces most governments. By increasing access to specialty expertise, telemedicine may be a potential solution to this problem. Regardless of its potential, many telemedicine initiatives do not progress beyond the research phase, and are not implemented into mainstream practice. One reason may be that some telemedicine services are developed without the appropriate planning to ascertain community needs and clinical requirements. The aim of this paper is to report the development of a planning framework for telemedicine services based on needs assessment. The presented framework is based on the key processes in needs assessment, Penchansky and Thomas's dimensions of access, and Bradshaw's types of need. This proposed planning framework consists of two phases. Phase one comprises data collection and needs assessment, and includes assessment of availability and expressed needs; accessibility; perception and affordability. Phase two involves prioritising the demand for health services, balanced against the known limitations of supply, and the implementation of an appropriate telemedicine service that reflects and meets the needs of the community. Using a structured framework for the planning of telemedicine services, based on need assessment, may help with the identification and prioritisation of community health needs.

Telehealth services in rural and remote Australia: a systematic review of models of care and factors influencing success and sustainability.

INTRODUCTION: With the escalating costs of health care, issues with recruitment and retention of health practitioners in rural areas, and poor economies of scale, the question of delivering people to services or services to people is a dilemma for health authorities around the world. People living in rural areas have poorer health outcomes compared to their urban counterparts, and the problem of how to provide health care and deliver services in rural locations is an ongoing challenge. Telehealth services can efficiently and effectively improve access to healthcare for people living in rural and remote areas of Australia. However, telehealth services are not mainstream or routinely available in many rural and remote locations. The barriers to integration of telehealth into mainstream practice have been well described, but not the factors that may influence the success and sustainability of a service. Our aim was to collate, review and synthesise the available literature regarding telehealth services in rural and remote locations of Australia, and to identify the factors associated with their sustained success. METHODS: A systematic literature review of peer-reviewed and grey literature was undertaken. Electronic databases were searched for potentially relevant articles. Reference lists of retrieved articles and the grey literature were also searched. Searches identified 970 potentially eligible articles published between 1988 and 2015. Studies and manuscripts of any type were included if they described telehealth services (store-and-forward or real-time videoconferencing) to provide clinical service or education and training related to health care in rural or remote locations of Australia. Data were extracted according to pre-defined criteria and checked for completeness and accuracy by a second reviewer. Any disagreements were resolved with discussion with a third researcher. All articles were appraised for quality and levels of evidence. Data were collated and grouped into categories including clinical speciality, disciplines involved, geographical location and the role of the service. Data relating to the success or sustainability of services were grouped thematically. RESULTS: Inclusion criteria were met by 116 articles that described 72 discrete telehealth services. Telehealth services in rural and remote Australia are described and we have identified six key factors associated with the success and sustainability of services: vision, ownership, adaptability, economics, efficiency and equipment. CONCLUSIONS: Telehealth has the potential to address many of the key challenges to providing health in Australia, with its substantial land area and widely dispersed population. This review collates information regarding the telehealth services in Australia and describes models of care and characteristics of successful and sustainable services. We identified a wide variety of telehealth services being provided in rural and remote areas of Australia. There is great potential to increase this number by scaling up and replicating successful services. This review provides information for policy makers, governments and public and private health services that wish to integrate telehealth into routine practice and for telehealth providers to enhance the sustainability of their service.

Heparin versus 0.9% sodium chloride intermittent flushing for the prevention of occlusion in long term central venous catheters in infants and children.

BACKGROUND: Guidelines and clinical practice for the prevention of complications associated with central venous catheters (CVC) around the world vary greatly. Most institutions recommend the use of heparin to prevent occlusion, however there is debate regarding the need for heparin and evidence to suggest 0.9% sodium chloride (normal saline) may be as effective. The use of heparin is not without risk, may be unnecessary and is also associated with increased cost. OBJECTIVES: To assess the clinical effects (benefits and harms) of intermittent flushing of heparin versus normal saline to prevent occlusion in long term central venous catheters in infants and children. SEARCH METHODS: The Cochrane Vascular Trials Search Co-ordinator searched the Specialised Register (last searched April 2015) and the Cochrane Register of Studies (Issue 3, 2015). We also searched the reference lists of retrieved trials. SELECTION CRITERIA: Randomised controlled trials that compared the efficacy of normal saline with heparin to prevent occlusion of long term CVCs in infants and children aged up to 18 years of age were included. We excluded temporary CVCs and peripherally inserted central catheters (PICC). DATA COLLECTION AND ANALYSIS: Two review authors independently assessed trial inclusion criteria, trial quality and extracted data. Rate ratios were calculated for two outcome measures - occlusion of the CVC and central line-associated blood stream infection. Other outcome measures included duration of catheter placement, inability to withdraw blood from the catheter, use of urokinase or recombinant tissue plasminogen, incidence of removal or re-insertion of the catheter, or both, and other CVC-related complications such as dislocation of CVCs, other CVC site infections and thrombosis. MAIN RESULTS: Three trials with a total of 245 participants were included in this review. The three trials directly compared the use of normal saline and heparin, however, between studies, all used different protocols for the standard and experimental arms with different concentrations of heparin and different frequency of flushes reported. In addition, not all studies reported on all outcomes. The quality of the evidence ranged from low to very low because there was no blinding, heterogeneity and inconsistency between studies was high and the confidence intervals were wide. CVC occlusion was assessed in all three trials (243 participants). We were able to pool the results of two trials for the outcomes of CVC occlusion and CVC-associated blood stream infection. The estimated rate ratio for CVC occlusion per 1000 catheter days between the normal saline and heparin group was 0.75 (95% CI 0.10 to 5.51, two studies, 229 participants, very low quality evidence). The estimated rate ratio for CVC-associated blood stream infection was 1.48 (95% CI 0.24 to 9.37, two studies, 231 participants; low quality evidence). The duration of catheter placement was reported to be similar between the two study arms, in one study (203 participants). AUTHORS' CONCLUSIONS: The review found that there was not enough evidence to determine the effects of intermittent flushing of heparin versus normal saline to prevent occlusion in long term central venous catheters in infants and children. Ultimately, if this evidence were available, the development of evidenced-based clinical practice guidelines and consistency of practice would be facilitated.

Awareness, experiences and perceptions of telehealth in a rural Queensland community.

BACKGROUND: Telehealth can offer alternative options for receiving healthcare services in rural locations, improving access and reducing costs associated with traveling for services. However, the full potential of telehealth has not been realised with slow and fragmented uptake. This study describes the awareness, experiences and perceptions of telehealth in an Australian rural community. METHODS: Semi-structured interviews were undertaken with 47 participants from three rural towns in the Darling Downs region of Queensland. Content analysis was used to abstract themes and core concepts from the interviews. RESULTS: Three participants were healthcare providers who had all previously used telehealth in their clinical practice. Twenty-seven (57 %) participants regularly travelled to access specialist healthcare. While 28 (60 %) participants were aware of telehealth, only six (13 %) had actually used telehealth services; three as patients and three as healthcare providers. Major themes evident included: acceptance of the need to travel; paternalism and empowerment; and trust and misconceptions. CONCLUSIONS: For telehealth initiatives to be successful, there needs to be greater public awareness and understanding of the potential benefits of telehealth. Empowering patients as partners in the delivery of healthcare may be an important factor in the growth of telehealth services.

Paediatric palliative care by video consultation at home: a cost minimisation analysis.

BACKGROUND: In the vast state of Queensland, Australia, access to specialist paediatric services are only available in the capital city of Brisbane, and are limited in regional and remote locations. During home-based palliative care, it is not always desirable or practical to move a patient to attend appointments, and so access to care may be even further limited. To address these problems, at the Royal Children's Hospital (RCH) in Brisbane, a Home Telehealth Program (HTP) has been successfully established to provide palliative care consultations to families throughout Queensland. METHODS: A cost minimisation analysis was undertaken to compare the actual costs of the HTP consultations, with the estimated potential costs associated with face-to face-consultations occurring by either i) hospital based consultations in the outpatients department at the RCH, or ii) home visits from the Paediatric Palliative Care Service. The analysis was undertaken from the perspective of the Children's Health Service. The analysis was based on data from 95 home video consultations which occurred over a two year period, and included costs associated with projected: clinician time and travel; costs reimbursed to families for travel through the Patients Travel Subsidy (PTS) scheme; hospital outpatient clinic costs, project co-ordination and equipment and infrastructure costs. The mean costs per consultation were calculated for each approach. RESULTS: Air travel (n = 24) significantly affected the results. The mean cost of the HTP intervention was $294 and required no travel. The estimated mean cost per consultation in the hospital outpatient department was $748. The mean cost of home visits per consultation was $1214. Video consultation in the home is the most economical method of providing a consultation. The largest costs avoided to the health service are those associated with clinician time required for travel and the PTS scheme. CONCLUSION: While face-to-face consultations are the gold standard of care, for families located at a distance from the hospital, video consultation in the home presents an effective and cost efficient method to deliver a consultation. Additionally video consultation in the home ensures equity of access to services and minimum disruption to hospital based palliative care teams.

Home telehealth and paediatric palliative care: clinician perceptions of what is stopping us?

BACKGROUND: Advances in technology have made the use of telehealth in the home setting a feasible option for palliative care clinicians to provide clinical care and support. However, despite being widely available and accessible, telehealth has still not been widely adopted either in Australia or internationally. The study aim was to investigate the barriers, enablers and perceived usefulness for an established home telehealth program in paediatric palliative care from the perspective of clinicians. METHODS: Semi-structured interviews (n = 10) were undertaken with palliative care clinicians in a tertiary paediatric hospital to identify attitudes to, satisfaction with, and perceived benefits and limitations of, home telehealth in palliative care. Iterative analysis was used to thematically analyse data and identify themes and core concepts from interviews. RESULTS: FOUR THEMES ARE REPORTED: managing relationships; expectations of clinicians; co-ordination, and the telehealth compromise. Core concepts that emerged from the data were the perceived ability to control clinical encounters in a virtual environment and the need to trust technology. These concepts help explain the telehealth compromise and low utilisation of the home telehealth program. CONCLUSIONS: Effective communication between caregivers and clinicians is recognised as a core value of palliative care. Home telehealth has the potential to provide a solution to inequity of access to care, facilitate peer support and maintain continuity of care with families. However, significant limitations and challenges may impede its use. The virtual space creates additional challenges for communication, which clinicians and families may not intuitively understand. For home telehealth to be integrated into routine care, greater understanding of the nature of communication in the virtual space is required.

Second Primary Cancers Following Cancer Among Adolescents and Young Adults in Queensland, Australia, 1982-2018.

Purpose: Increased risk of second primary cancers is an unwanted consequence of cancer survivorship. While the epidemiology of second cancers is well-documented for children and older people, less is known about second cancers among adolescent and young adult (AYA) cancer survivors. Methods: Unit record data were obtained from the Queensland Cancer Register. The study cohort comprised Queensland residents aged 15 to 39 years who were diagnosed with a first primary invasive cancer between 1982 and 2013. Follow-up on second cancers was available for a minimum of 5 years to the end of 2018. Standardized incidence ratios (SIRs) were used to approximate the risk of a second primary cancer relative to the general population. Results: In total, 3086 second primary cancers were observed among 34,431 eligible AYA patients (9%), equating to an overall SIR of 1.59 (95% confidence interval [CI] 1.53-1.64). Melanoma (n = 853, 28%) and female breast cancer (n = 594, 19%) were the most common types of second primary cancer in the study cohort. Relative risk of all second primary cancers combined among AYA patients was inversely associated with age and was highest within the period immediately after first diagnosis irrespective of age group; for example, patients aged 15-24 at first diagnosis recorded more than four times as many second primary cancers than expected within 2 years of their first cancer (SIR = 4.40, 95% CI 2.83-6.82). Conclusions: Detailed data on second primary cancers among AYA cancer survivors are important in promoting increased awareness and to inform the development of targeted prevention and surveillance strategies.

Therapeutic exercise interventions in pediatric survivors of brain cancer and other solid tumors: A scoping review.

Background: Improved survival rates for children with solid tumors presents an ongoing challenge of how to maximize quality of survivorship and effectively manage the short- and long-term complications of disease and treatment. To gain an understanding of the extent and nature of research pertaining to therapeutic exercise interventions and identify knowledge gaps, we conducted a scoping review of exercise training studies conducted in pediatric survivors of brain cancer and other solid tumors. Method: A systematic literature search was performed across four electronic databases. Papers were selected for full-text review if they included participants treated for brain cancer or other solid tumors, with at least 50% of participants aged ≤ 21 years, evaluated an exercise intervention ≥2-weeks in duration, and were published in an English, peer-reviewed journal. We included the following quantitative study designs; randomized controlled trials, non-randomized trials, and single-arm pre-test-post-test. Results: Of the 7,482 citations identified, 17 papers met the inclusion criteria (presenting findings from eleven studies). Two studies were randomized controlled trials, five studies were non-randomized controlled trials, and four studies were a single-arm pre-test post-test design. Average age of participants ranged from 7.3-15.5 years, and time since diagnosis ranged from 3 to 70 months. Five studies included participants with brain tumors exclusively, three studies included other solid tumors, and three studies included a mixed sample (brain and other solid tumors). A wide range of exercise modalities were employed, including cycle ergometry, resistance training, sport, yoga, and active gaming. The length of the exercise program ranged from 3-40 weeks and frequency from 3-11 sessions per week. Exercise session duration ranged from 15-180 min, with most studies reporting 30-90-min sessions. Adherence ranged from 77 to 100%, with none of the studies reporting adverse events. Studies reported improvements in cardiorespiratory fitness, functional strength, physical activity, and quality of life. Conclusions: A small number of mostly low methodological quality studies have examined the effects of therapeutic exercise in pediatric survivors of solid tumors. Although limited, the extant literature supports the feasibility and safety of therapeutic exercise interventions for pediatric survivors of brain cancer and other solid tumors.

Adolescents and Young Adults with Cancer: Barriers in Access to Psychosocial Support.

Purpose: Adolescents and young adults (AYAs) experience cancer at a time of significant developmental transition. Both disease and treatment impact psychosocial well-being in significant, persistent ways. While the impacts are now described, and the need for psychosocial care is increasingly well recognized, to date, the barriers in access to care have not been well delineated. This is essential to understand to facilitate access to appropriate care and improve outcomes. Methods: This study explored the barriers in access to psychosocial care for young people. Semistructured, audio-recorded interviews were undertaken with 16 AYAs aged 15-25 years. Eligible participants were diagnosed within the previous 24 months and recruited through the Queensland Youth Cancer Service (QYCS). Transcribed interviews were analyzed using content analysis. Results: Barriers in access to support were related to person-centered, service-related, and systemic factors. Barriers experienced at diagnosis and during treatment were less common compared with barriers after treatment; these were significant and largely related to a lack of holistic, multidisciplinary survivorship care. Conclusion: Barriers in access to psychosocial care are multifactorial, although most can be addressed through health-service responses. Ensuring standardized referral and repeated introduction of psychosocial care for young people is imperative, regardless of location of treatment. Flexible services are especially important for patients treated across different facilities. The development of comprehensive post-treatment survivorship models of care is also essential. Continued evaluation of the experience of young people and the barriers they face is also crucial to ensure responsive service development and promote optimal care.

Documentation of Symptoms in Children Newly Diagnosed With Cancer Highlights the Need for Routine Assessment Using Self-report.

BACKGROUND: Symptom management is a cornerstone of quality care and has the potential to vastly influence patient experiences. The supportive care needs of children, however, are not well described. OBJECTIVE: The aims of this study were to describe documentation about assessment and occurrence of symptoms in medical records of children with cancer and to compare the profile of documented symptoms with child self-report. METHODS: Twelve weeks of medical records of children (8-18 years) newly diagnosed with cancer were reviewed, and data were extracted regarding symptom assessment and occurrence. A second cohort of children attending oncology outpatients completed the electronic Symptom Screening in Pediatrics self-report of symptom bother. They also answered additional questions about other symptoms and the experience of self-report. We evaluated the profile of symptoms recorded as assessed by healthcare providers and self-reported by children. RESULTS: One thousand three hundred sixteen symptoms were identified in 3642 assessments. The symptoms most commonly documented by medical and nursing staff were nausea, pain, and appetite. Allied health staff most frequently documented fatigue, feeling scared, or sad. Forty-eight children completed self-report for the same symptoms and identified fatigue, appetite, and taste were the most bothersome. Children were positive about the experience of completing self-report. CONCLUSION: This study adds further to the evidence about the importance of obtaining information beyond routine clinical assessment from children themselves. IMPLICATIONS FOR PRACTICE: Healthcare providers do not routinely identify all distressing symptoms during clinical encounters. Use of patient-reported outcome measures in children is feasible and acceptable and empowers children to communicate about symptoms, which can facilitate prompt intervention.

Cancer Incidence, Mortality, and Survival for Children, Adolescents, and Young Adults in Queensland Between 1987 and 2016.

Purpose: Cancer remains the most common cause of disease-related death among young people and carries a significant burden. In the absence of prior state-based Australian epidemiological studies, this retrospective cohort study reviewed all cases of invasive cancer diagnosed in Queensland children, adolescents, and young adults (AYAs) (0-39 years) from 1987 to 2016 using the Queensland Oncology Repository (QOR). Methods: Cancers were classified according to Surveillance, Epidemiology and End Results (SEER) AYA site recode. Age-standardized rates (ASRs) were calculated. JoinPoint regression examined trends in ASRs across three age cohorts, for three decades (1987-1996, 1997-2006, and 2007-2016). Results: In total, 3,576 children aged 0-14 years (ASR = 15.2/100,000), 6,441 aged 15-24 years (ASR = 39.3/100,000), and 29,923 (ASR = 122.6/100,000) aged 25-39 years were diagnosed. Incidence increased for female children, and leukemia was the most common diagnosis. For those 15-24 years, incidence increased initially before decreasing and was higher than other nationally reported rates. For those 25-39 years, incidence increased. For the older cohorts, the most common diagnosis was melanoma. All cohorts demonstrated a decline in mortality and improvement in 5-year relative survival, with those 0-14 years demonstrating the greatest gains. The lowest survival for all cohorts was associated with central nervous system tumors. Conclusion: These results highlight areas in need of further investigation to improve survival, reduce the burden of cancer for young people, and aid service delivery. Future studies should focus on cancer biology, early detection, barriers in access to clinical trials, innovative models of care, improved data collection, and patient-reported outcomes.