Perspectives on community-based system change for people living with persistent pain: insights from developing the "Rethinking Pain service".

In this perspective article we advocate community-based system change for people living with persistent pain. Our view is that greater use of the voluntary and community sector, in partnership with the clinical sector, creates the conditions for a "whole person" approach to pain management, leading to greater personalised care for adults living with long-term pain whilst having the potential to ease some of the pressures on General Practitioners and other clinical services. We advocate pain care that is socially connected, meaningful within socio-cultural contexts and aligned with the principles of salutogenesis. We provide an example of a UK National Health Service (NHS) commissioned pain service called "Rethinking Pain" that operationalises this perspective. Led by the voluntary and community sector, Rethinking Pain works in partnership with the clinical sector to provide a central holistic pathway of care for people experiencing persistent pain. This is the first time that this model of care has been commissioned for persistent pain in this area of England. The Rethinking Pain service is underpinned by core values to work with people to manage their pain holistically. The Rethinking Pain team proactively engage with people in the community, actively approaching and engaging those who experience the biggest health inequalities. In this article we provide an overview of the context of pain services in the UK, the rationale and supporting evidence for community-based system change, and the context, pathway, values, goals, and aspirations of the Rethinking Pain service.

Measures of Subjective Memory for People with Epilepsy: A Systematic Review of Measurement Properties.

People with epilepsy frequently express concern about the burden of memory problems in their everyday lives. Self-report memory questionnaires may provide valuable insight into individuals' perceptions of their everyday memory performance and changes over time. Yet, despite their potential utility, the measurement properties of self-report memory questionnaires have not been evaluated in epilepsy. This systematic review aimed to provide a critical appraisal of the measurement properties of self-report memory questionnaires for adults with epilepsy. Following protocol registration (PROSPERO CRD42020210967), a systematic search of PubMed, EMBASE, Web of Science, CINAHL, and PsychInfo from database inception until 27 May 2021 was conducted. Eligible studies were published in English-language peer-reviewed journals, recruited adults with epilepsy, and reported on the development or evaluation of the measurement properties of a self-report memory questionnaire. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) methodology was used to evaluate each study of a measurement property, and results were qualitatively synthesised. In total, 80 articles and one test manual were located containing 153 studies of measurement properties pertinent to 23 self-report memory questionnaires. Overall, no scale could be recommended outright for the evaluation of subjective memory symptoms in adults with epilepsy. This was due to the near absence of dedicated content validation studies relevant to this population and shortcomings in the methodology and scientific reporting of available studies of structural validity. Recommendations to support the advancement and psychometric validation of self-report memory questionnaires for people with epilepsy are provided.

Pain through the perspective of art and creativity: insights from the Unmasking Pain project.

People struggle to tell their story of living with pain and when they do it is articulated in a way that may not be understood, heard or taken seriously. Unmasking Pain is an artist-led project that explored creative approaches to tell stories of life with pain. The project was led by a dance theatre company that specialises in storytelling and emotional experiences for players and audiences. The project involved artists and people living with ongoing pain co-creating activities and environments to curiously explore "oneself", through imagination and creative expression. This article discusses insights and perspectives emerging from the project. The project revealed the power of art to make-sense of oneself with or without pain, and how art facilitates expression of complex inner experience and personal stories. People described Unmasking Pain as "explorative joy despite pain", and "a new set of rules" that contrasts with those experienced during clinical encounters. We discuss how art has the potential to improve clinical encounters and promote health and well-being, and whether artist-led activities are an intervention, therapy, or something else. Pain rehabilitation specialists from the project described Unmasking Pain as "freeing-up thinking", allowing conceptual thought beyond the biopsychosocial model of pain. We conclude that art has the potential to shift people living with pain from "I can't do, I am not willing to do it" to "Perhaps I can, I'll give it a go, I enjoyed".

Beyond Medical Care: How Different National Models of Care Impact the Experience of Adolescent and Young Adult Cancer Patients.

Patient experience is positively associated with clinical effectiveness, quality care, and patient safety. This study examines the experience of care of adolescents and young adult (AYA) cancer patients from Australia and the United States, allowing a comparison of patient experiences in the context of different national models of cancer care delivery. Participants (n = 190) were aged 15-29 years and received cancer treatment from 2014 to 2019. Australians (n = 118) were recruited nationally by health care professionals. U.S. participants (n = 72) were recruited nationally via social media. The survey included demographic and disease variables, and questions regarding medical treatment, information and support provision, care coordination, and satisfaction across the treatment pathway. Sensitivity analyses examined the possible contribution of age and gender. Most patients from both countries were satisfied or very satisfied with their medical treatment (chemotherapy, radiotherapy, and surgery). There were significant differences between countries in the provision of fertility preservation services, age-appropriate communication, and psychosocial support. Our findings suggest when a national system of oversight with both state and federal funding is implemented, as is the case in Australia but not in the United States, significantly more AYAs with cancer receive age-appropriate information and support services, and improved access to specialist services such as fertility care. A national approach with government funding and centralized accountability appears to be associated with substantial benefits for the well-being of AYAs undergoing cancer treatment.

A qualitative study to explore the acceptability and feasibility of implementing person-focused evidence-based pain education concepts in pre-registration physiotherapy training.

Objectives: The purpose of this study was to engage with physiotherapy clinicians, academics, physiotherapy students and patients to explore the acceptability, feasibility, and practical considerations of implementing person-focused evidence-based pain education concepts, identified from our previous research, in pre-registration physiotherapy training. Design: This qualitative study took a person-focused approach to ground pain education in the perspectives and experiences of people who deliver and use it. Data was collected via focus groups and in-depth semi-structured interviews. Data was analysed using the seven stage Framework approach. Setting: Focus groups and interviews were conducted either face to face, via video conferencing or via telephone. This depended on geographical location, participant preference, and towards the end of data collection the limitations on in-person contact due to the Covid-19 pandemic. Participants: UK based physiotherapy clinicians, physiotherapy students, academics and patients living with pain were purposively sampled and invited to take part. Results: Five focus groups and six semi-structured interviews were conducted with twenty-nine participants. Four key dimensions evolved from the dataset that encapsulate concepts underpinning the acceptability and feasibility of implementing pain education in pre-registration physiotherapy training. These are (1) make pain education authentic to reflect diverse, real patient scenarios, (2) demonstrate the value that pain education adds, (3) be creative by engaging students with content that requires active participation, (4) openly discuss the challenges and embrace scope of practice. Conclusions: These key dimensions shift the focus of pain education towards practically engaging content that reflects people experiencing pain from diverse sociocultural backgrounds. This study highlights the need for creativity in curriculum design and the importance of preparing graduates for the challenges that they will face in clinical practice.

Dissecting Schizotypy and Its Association With Cognition and Polygenic Risk for Schizophrenia in a Nonclinical Sample.

Schizotypy is a multidimensional construct that captures a continuum of risk for developing schizophrenia-spectrum psychopathology. Existing 3-factor models of schizotypy, consisting of positive, negative, and disorganized dimensions have yielded mixed evidence of genetic continuity with schizophrenia using polygenic risk scores. Here, we propose an approach that involves splitting positive and negative schizotypy into more specific subdimensions that are phenotypically continuous with distinct positive symptoms and negative symptoms recognized in clinical schizophrenia. We used item response theory to derive high-precision estimates of psychometric schizotypy using 251 self-report items obtained from a non-clinical sample of 727 (424 females) adults. These subdimensions were organized hierarchically using structural equation modeling into 3 empirically independent higher-order dimensions enabling associations with polygenic risk for schizophrenia to be examined at different levels of phenotypic generality and specificity. Results revealed that polygenic risk for schizophrenia was associated with variance specific to delusional experiences (γ = 0.093, P = .001) and reduced social interest and engagement (γ = 0.076, P = .020), and these effects were not mediated via the higher-order general, positive, or negative schizotypy factors. We further fractionated general intellectual functioning into fluid and crystallized intelligence in 446 (246 females) participants that underwent onsite cognitive assessment. Polygenic risk scores explained 3.6% of the variance in crystallized intelligence. Our precision phenotyping approach could be used to enhance the etiologic signal in future genetic association studies and improve the detection and prevention of schizophrenia-spectrum psychopathology.

Visible label-free detection of bacterial DNA using flocculation of sterically stabilised cationic latexes.

The current gold standard diagnostic for bacterial infections is the use of culture, which can be time consuming and can take up to five days for results to be reported. There is therefore an unmet clinical need for a rapid and label free alternative. This paper demonstrates a method of detecting the presence of amplified DNA from bacterial samples using a sterically-stabilised, cationic polymer latex and widely available equipment, providing an accessible alternative DNA detection technique. If DNA is present in a sample, successful amplification by polymerase chain-reaction (PCR) results in the amplified DNA inducing flocculation of the polymer latex followed by rapid sedimentation. This results in a visible and obvious change from a milky-white dispersion to a precipitated latex with a colourless and transparent supernatant, thus giving a clear visual indication of the presence or absence of amplified DNA. Specifically, the response of four polymer latexes with different morphologies to the addition of amplified bacterial DNA was investigated. Cationic latexes flocculated rapidly whereas non-ionic and anionic latexes did not, as judged by eye, disc centrifuge photosedimentometry (DCP), and UV-visible spectrophotometry. The stability of several cationic latexes with different morphologies in typical PCR reagents was investigated. It was found that unwanted flocculation occurred for a latex with a non-ionic core and a cationic corona (poly[2-vinyl pyridine-b-benzyl methacrylate], prepared by polymerisation-induced self-assembly) whereas a ∼700 nm PEGMA-stabilised P2VP latex (non-ionic stabiliser, cationic core), prepared by emulsion polymerisation remained stable. The sensitivity and rate of sedimentation of the PEGMA-stabilised P2VP latex was demonstrated by varying the sequence length and concentration of amplified DNA from Pseudomonas aeruginosa using universal bacterial primers. DNA concentrations as low as 0.78 ng µl-1 could readily be detected within 30 minutes from the addition of amplified DNA to the latex. Furthermore, the specificity of this method was demonstrated by showing a negative result occurs (no flocculation of the latex) when PCR product from a fungal (Candida albicans) sample using bacterial primers was added to the latex.

Social Cognition in Temporal and Frontal Lobe Epilepsy: Systematic Review, Meta-analysis, and Clinical Recommendations.

OBJECTIVE: Despite the importance of social cognitive functions to mental health and social adjustment, examination of these functions is absent in routine assessment of epilepsy patients. Thus, this review aims to provide a comprehensive overview of the literature on four major aspects of social cognition among temporal and frontal lobe epilepsy, which is a critical step toward designing new interventions. METHOD: Papers from 1990 to 2021 were reviewed and examined for inclusion in this study. After the deduplication process, a systematic review and meta-analysis of 44 and 40 articles, respectively, involving 113 people with frontal lobe epilepsy and 1482 people with temporal lobe epilepsy were conducted. RESULTS: Our results indicated that while patients with frontal or temporal lobe epilepsy have difficulties in all aspects of social cognition relative to nonclinical controls, the effect sizes were larger for theory of mind (g = .95), than for emotion recognition (g = .69) among temporal lobe epilepsy group. The frontal lobe epilepsy group exhibited significantly greater impairment in emotion recognition compared to temporal lobe. Additionally, people with right temporal lobe epilepsy (g =  1.10) performed more poorly than those with a left-sided (g = .90) seizure focus, specifically in the theory of mind domain. CONCLUSIONS: These data point to a potentially important difference in the severity of deficits within the emotion recognition and theory of mind abilities depending on the laterlization of seizure side. We also suggest a guide for the assessment of impairments in social cognition that can be integrated into multidisciplinary clinical evaluation for people with epilepsy.

Service Needs of Parent Caregivers of Adolescents and Young Adults with Incurable Cancer: A Scoping Review.

Adolescent and Young Adult (AYA) oncology is an internationally recognized established subspecialty in cancer care. Dedicated programs tailored to local environments endeavor to address unique medical, psychological, cognitive, and social needs that historically, health services have been challenged to meet. In recent years there has been a growing appreciation of the challenges facing AYA with incurable cancer and their parent caregivers. While health care professionals recognize the importance of parents' involvement in the care trajectory, there is less understanding of the services needed for support. This scoping review set out to identify and describe evidence available to better understand the services and approaches required from hospital teams to address the needs of parent caregivers and to identify gaps in knowledge to inform areas for further research. The question guiding this review is: What are the service needs of parent carers of AYA with incurable cancer. Using the Arksey and O'Malley scoping review framework, 1009 studies were identified from a broad search of relevant online databases, gray literature, and reference lists of published studies. After removing duplicates and ineligible studies, 492 abstracts were screened. Of these, 421 were ineligible, and 71 articles underwent full-text review. Eight studies were included in the final review. No single study was focused exclusively on parent caregivers of AYA with incurable cancer, demonstrating a paucity of quantitative and qualitative evidence to inform practice and a need for further research in the field.

AYA 'Can-Sleep' programme: protocol for a stepped-care, cognitive behavioural therapy-based approach to the management of sleep difficulties in adolescents and young adults with cancer.

BACKGROUND: Sleep problems are reported in up to 50% of adolescents and young adults (AYA) with cancer. Cognitive behavioural therapy for insomnia (CBTi) is considered the gold-standard treatment. In the AYA population, CBTi is associated with improvements in insomnia, daytime sleepiness, fatigue and quality of life. In adults, stepped-care interventions can improve accessibility to CBTi. This study aims to evaluate the acceptability and feasibility of a stepped-care CBTi programme in AYA with cancer. METHODS AND ANALYSIS: AYA (target N = 80) aged 16-25 with a diagnosis of cancer will be screened using the Insomnia Severity Index (ISI) and Epworth Sleepiness Scale (ESS). When sleep difficulties are identified by the ISI and/or ESS, they will be screened for obstructive sleep apnoea and restless leg syndrome and referred to a sleep service if indicated. The remainder with sleep difficulties will be offered a stepped-care sleep programme including CBT self-management and coaching (first step). Participants will then be rescreened at 5 weeks, and those with ongoing sleep difficulties will be offered individualised CBT (second step). Recruitment and retention rates, adherence to intervention and time taken to deliver screening and intervention will be collected to assess the feasibility of the programme. AYA and clinicians will complete evaluation surveys to assess the acceptability of the AYA Can-Sleep programme. DISCUSSION: We seek to contribute to the evidence base regarding screening and treatment of sleep difficulties in the AYA population by implementing the AYA Can-Sleep programme and determining its feasibility and acceptability as an approach to care in an Adolescent & Young Adult Cancer Service.

International, multi-disciplinary, cross-section study of pain knowledge and attitudes in nursing, midwifery and allied health professions students.

BACKGROUND: Persistent pain is a highly prevalent, global cause of disability. Research suggests that many healthcare professionals are not well equipped to manage pain, and this may be attributable at least in part to undergraduate education. The primary aim of this study was to quantify and compare first and final year nursing, midwifery and allied health professional (NMAHP) students' pain related knowledge and attitudes. The secondary aim was to explore what factors influence students' pain related knowledge and attitudes. METHODS: In this cross-sectional study, 1154 first and final year healthcare students, from 12 universities in five different countries completed the Revised Neurophysiology of Pain Quiz (RNPQ) [knowledge] and the Health Care Providers Pain and Impairment Relationship Scale (HC-PAIRS) [attitudes]. RESULTS: Physiotherapy was the only student group with statistically and clinically improved pain related knowledge [mean difference, 95% CI] (3.4, 3.0 to 3.9, p = 0.01) and attitudes (-17.2, -19.2 to 15.2, p = 0.01) between first and final year. Pain education teaching varied considerably from course to course (0 to 40 h), with greater levels of pain related knowledge and attitudes associated with higher volumes of pain specific teaching. CONCLUSIONS: There was little difference in pain knowledge and attitudes between all first and final year NMAHP students other than physiotherapy. This suggests that for most NMAHP disciplines, undergraduate teaching has little or no impact on students' understanding of pain. There is an urgent need to enhance pain education provision at the undergraduate level in NMAHPs. TRIAL REGISTRATION: The study protocol was prospectively registered at ClinicalTrials.Gov NCT03522857 .

The Clinical Utility of the Adolescent and Young Adult Psycho-Oncology Screening Tool (AYA-POST): Perspectives of AYA Cancer Patients and Healthcare Professionals.

Objective: Routine psychosocial screening and assessment of people diagnosed with cancer are crucial to the timely detection of distress and provision of tailored supportive care; however, appropriate screening tools have been lacking for adolescents and young adults (AYAs), who have unique needs and experiences. One exception is the recently validated AYA Psycho-Oncology Screening Tool (AYA-POST) for use with young people aged 15-29 years, which comprises a distress thermometer and age-specific needs assessment. This study investigates the clinical utility of this measure, as well as the subsequent service responsiveness within the Australian Youth Cancer Services. Method: In total, 118 AYAs and 29 healthcare professionals: (HCPs) completed surveys about the clinical utility of the AYA-POST; a subset of 30 AYAs completed a 3-month follow-up survey assessing service responsiveness. Descriptive statistics (frequencies/means) were computed for all items, with chi-square analyses used to explore whether perceived clinical utility varied with AYA age, AYA sex, HCP discipline or HCP length of time using the AYA-POST. Results: Participants' responses demonstrate high levels of satisfaction with the tool, evidencing its appropriateness, practicability and acceptability. Moreover, the AYA-POST was reported to facilitate communication about psychosocial needs and prompt referrals, indicating good service responsiveness. Ratings of clinical utility did not differ significantly between AYA and HCP groups. Conclusion: This study demonstrates that the AYA-POST is an appropriate tool in the psychosocial screening of AYAs with cancer, facilitating the identification of distress and unique concerns in this population and valuable in triaging and tailoring care for young cancer patients.

Control of Staphylococcal-mediated endogenous protease activity alters wound closure time in a complex wound model.

BACKGROUND: Elevated protease activity is a characteristic feature of chronic wounds, where the inflammatory phase of wound healing is prolonged. The choice of dressings in treatment of chronic wounds can change the nature of the wound base and have a significant impact on healing. OBJECTIVE: To evaluate the impact of oxidised regenerated cellulose/collagen dressings on Staphylococcal-mediated protease activity in an inflamed wound model. METHODS: We developed an in vitro 3D inflamed wound model, and simulated inflammation by exposing the models to Staphylococcal spent culture supernatant. Protease activity and wound healing were assessed in the presence/absence of the dressings. RESULTS: Histological analysis of the wound model revealed two distinct layers, an epidermal and dermal layer, similar to the organisation of human skin. Inflammation with Staphylococcal spent culture supernatant elevated protease levels by 1.7x and consequently prevented the wound from progressing to the proliferative phase of healing, without having a negative effect on cell viability. Adding a collagen dressing, known to have non-specific protease modulating properties, reduced Staphylococcal-mediated protease activity back to baseline, with a concomitant reduction in wound closure time. Inflamed wounds thus resembled unwounded skin after 10 days of treatment with the dressings. CONCLUSION: Our findings support the further evaluation and use of oxidised regenerated cellulose/collagen dressings for inflamed, non-healing wounds in the clinical setting. The model used in this study has the potential to be applied in preclinical research; to test wound dressing performance, such as healing and cell viability, and to also assess key markers of inflammation.

Rethinking pain education from the perspectives of people experiencing pain: a meta-ethnography to inform physiotherapy training.

BACKGROUND: Pain is a complex, global and multidimensional phenomena that impacts the lives of millions of people. Chronic pain (lasting more than 3 months) is particularly burdensome for individuals, health and social care systems. Physiotherapists have a fundamental role in supporting people who are experiencing pain. However, the appropriateness of pain education in pre-registration physiotherapy training programmes has been questioned.Recent research reports identify the need to integrate the voice of patients to inform the development of the pre-registration curriculum. The aim of this meta-ethnography was to develop new conceptual understanding of patients' needs when accessing physiotherapy for pain management. The concepts were viewed through an educational lens to create a patient needs-based model to inform physiotherapy training. METHODS: Noblit and Hare's seven-stage meta-ethnography was used to conduct this qualitative systematic review. Five databases (MEDLINE, CINAHL Complete, ERIC, PsycINFO and AMED) were searched with eligibility criteria: qualitative methodology, reports patient experience of physiotherapy, adult participants with musculoskeletal pain, reported in English. Databases were searched to January 2018. Emerge reporting guidelines guided the preparation of this manuscript. RESULTS: A total of 366 citations were screened, 43 full texts retrieved and 18 studies included in the final synthesis. Interpretive qualitative synthesis resulted in six distinct categories that represent patients' needs when in pain. Analysing categories through an education lens resulted in three overall lines of argument to inform physiotherapy training. The categories and lines of argument are represented in a 'needs-based' model to inform pre-registration physiotherapy training. DISCUSSION: The findings provide new and novel interpretations of qualitative data in an area of research that lacks patient input. This is a valuable addition to pain education research. Findings support the work of others relative to patient centredness in physiotherapy.

A Descriptive Cohort Study of Adolescent and Young Adult Decedents Known to an Australian Comprehensive Cancer Center.

In Australia, cancer is the second leading cause of death in adolescents and young adults (AYA). In an audit of 76 AYA decedents known to a comprehensive cancer center, most were male (63%), and most had a parent as primary carer (78%). Median age at diagnosis was 21 years (range: 15-27). Median time from diagnosis to first palliative care consultation was 9 months, and from first palliative care review to death, 4 months. Location of death was hospital (41%), home (24%), and palliative care unit (16%). Eleven (65%) of 17 patients who wished to die at home achieved this.

Working with interpreters when working with forced migrants in mental health.

281 million people were recorded as having migrated across national borders by the United Nations in 2021, this equates to approximately 3.6 percent of the world's population. Forced migrants/refugees account for 12 per cent of all international migrants. A percentage of these people will not speak the language of their new country fluently. If they are to access and utilize mental health services, they will require access to an interpreter. This paper provides guidance on working with interpreters in health settings when the work is either face to face or on-line. These guidelines are based on those written by the authors for the British Psychological Society. Working effectively with interpreters should be a skill in the repertoire of every clinician. This is to ensure that equal opportunities are upheld and that certain groups (including forced migrants) are not denied access to mental health services. Interpreters may also assist with teaching clinicians about diverse cultural views surrounding mental health and well-being. They may also advise on idioms of distress, cultural meanings and expression of emotional problems across cultures, explanatory health models and contextual factors which may help extend the repertoire of clinicians. The guidelines cover key recommendations for practice, booking and finding an interpreter, preparation before the consultation/meeting, practical considerations, preparation with the interpreter, during the meeting/consultation, issues to address after the meeting, written translations, psychometric testing, working by telephone or online and other issues to consider when working with an interpreter. These are reproduced below (with the permission of the BPS) in a shortened and updated form.Key recommendations for practiceUndertake a language needs analysis of the population covered by your service or Trust and consider how you will best meet needs.If you have not undertaken training in working with interpreters, undertake a training course. If you are working with an interpreter unexpectedly and training is not feasible, read these or other relevant guidelines and allocate time to consider the issues or discuss them with a more experienced colleague.Check that the interpreter is qualified and appropriate for the consultation/meeting and speaks the service user's first language.Allocate 10-15 minutes in advance of the session to brief the interpreter about the purpose of the meeting and to enable them to inform you about any cultural issues which may have bearing on the session.Be mindful of issues of confidentiality and trust when working with someone from a small language community as the service user may be anxious about being identifiable and mistrustful of an interpreter's professionalism. This has particular relevance when working with forced migrants.State clearly that you alone hold clinical responsibility for the meeting.Commit to a collaborative working relationship based on trust and mutual respect.Match if appropriate for gender, age or religion, avoid using relatives and never use a child.Create an atmosphere where each member of the triad feels able to ask for clarification if anything is unclear and be respectful to your interpreter, they are an important member of the team who makes your work possible.Be aware of the well-being of your interpreter and mindful of the risk of vicarious traumatization. Consider what support they will be offered, and if they are subcontracted from an external agency, be aware that there is often little support provided by their employer.At the end of the session always allocate 10-15 minutes to debrief the interpreter about the session and offer support and supervision as appropriate.Extreme caution should be exercised when considering the use of translated assessment measures as languages and concepts are not interchangeable and results may therefore not be valid or meaningful.All written translations used should have been back translated to ensure they are fit for purpose.Commissioners of health services need to ensure that there are clear pathways to support for all members of their local community including those who do not speak the majority language.

Risk factors associated with suicide in adolescents and young adults (AYA) with cancer.

BACKGROUND: Higher rates of death by suicide are recognized both in individuals of any age with cancer and, separately, among adolescents and young adults (AYA) without cancer. Given this intersection, identifying risk factors associated with suicidal risk among AYA with cancer is critical. OBJECTIVE: To identify characteristics associated with suicide among AYA with cancer. METHODS: A retrospective analysis of AYA (aged 15-39) during 1975-2016 from the Surveillance, Epidemiology, and End Results database was conducted. Clinical and demographic factors associated with death by suicide among the AYA cancer population were compared to (i) US population normative data (standardized mortality ratios [SMRs]) and (ii) other AYA individuals with cancer (odds ratios). RESULTS: In total, 922 suicides were found in 500,366 AYA with cancer (0.18%), observed for 3,198,261 person-years. The SMR for AYA with cancer was 34.1 (95% confidence interval [CI]: 31.4-36.9). Suicide risk was particularly high in females (SMR = 43.4, 95% CI: 37.2-50.4), unmarried persons (SMR = 50.6, 95% CI: 44.7-57.1), those with metastatic disease (SMR = 45.2, 95% CI: 33.1-60.3), or certain histological subtypes (leukemia, central nervous system, and soft tissue sarcoma). Risk generally reduced over time, however remained elevated ≥5 years following a cancer diagnosis (SMR > 5 years = 28.1, 95% CI: 25.4-31.0). When comparing those who died from suicide and those who did not, the following factors demonstrated significant associations: sex (males > females), race (White ethnicity > Black/other ethnicity), relationship status (never married > other), and disease stage (distant > localized). CONCLUSIONS: Death due to suicide/non-accidental injury is high compared to normative data, requiring increased awareness among health-care providers, suicide risk monitoring in AYA, and appropriately tailored psychosocial interventions.

The Australian Youth Cancer Service: Developing and Monitoring the Activity of Nationally Coordinated Adolescent and Young Adult Cancer Care.

Adolescents and young adults (aged 15-25 years) diagnosed with cancer have unique medical and psychosocial experiences and care needs, distinct from those of paediatric and older adult patients. Since 2011, the Australian Youth Cancer Services have provided developmentally appropriate, multidisciplinary and comprehensive care to these young patients, facilitated by national service coordination and activity data collection and monitoring. This paper reports on how the Youth Cancer Services have conceptualised and delivered quality youth cancer care in four priority areas: clinical trial participation, oncofertility, psychosocial care and survivorship. National activity data collected by the Youth Cancer Services between 2016-17 and 2019-20 are used to illustrate how service monitoring processes have facilitated improvements in coordination and accountability across multiple indicators of quality youth cancer care, including clinical trial participation, access to fertility information and preservation, psychosocial screening and care and the transition from active treatment to survivorship. Accounts of both service delivery and monitoring and evaluation processes within the Australian Youth Cancer Services provide an exemplar of how coordinated initiatives may be employed to deliver, monitor and improve quality cancer care for adolescents and young adults.

Online, Group-Based Psychological Support for Adolescent and Young Adult Cancer Survivors: Results from the Recapture Life Randomized Trial.

Telehealth interventions offer a practical platform to support adolescent and young adult (AYA) cancer survivors' mental health needs after treatment, yet efficacy data are lacking. We evaluated an online, group-based, videoconferencing-delivered cognitive-behavioral therapy (CBT) intervention ('Recapture Life') in a 3-arm randomized-controlled trial comparing Recapture Life with an online peer-support group, and a waitlist control, with the aim of testing its impact on quality of life, emotional distress and healthcare service use. Forty AYAs (Mage = 20.6 years) within 24-months of completing treatment participated, together with 18 support persons. No groupwise impacts were measured immediately after the six-week intervention. However, Recapture Life participants reported using more CBT skills at the six-week follow-up (OR = 5.58, 95% CI = 2.00-15.56, p = 0.001) than peer-support controls. Recapture Life participants reported higher perceived negative impact of cancer, anxiety and depression at 12-month follow-up, compared to peer-support controls. Post-hoc analyses suggested that AYAs who were further from completing cancer treatment responded better to Recapture Life than those who had completed treatment more recently. While online telehealth interventions hold promise, recruitment to this trial was challenging. As the psychological challenges of cancer survivorship are likely to evolve with time, different support models may prove more or less helpful for different sub-groups of AYA survivors at different times.