Attachment as a mechanism influencing end-of-life communication: An analogue investigation.

Talking about dying when faced with end-of-life may be important for achieving optimal outcomes for young people and their families. Given the lack of research on young people's communication around end-of-life and death, this analogue study examined the role of attachment theory in conversations about dying. Experiment 1 assessed attachment security of 80 healthy young adults and randomised them to receive either an induction that raised awareness of one's attachment figures or a neutral induction, and then primed them with an imagined scenario where they were diagnosed with an incurable illness. Participants then completed a self-report measure of their willingness to discuss end-of-life topics with family, friends, or a psychologist. The experimental attachment induction did not increase willingness to talk about end-of-life concepts. Experiment 2 extended this design and asked participants to describe these conversations and assessed the content of their imagined end-of-life conversations. Experiment 2 replicated the finding that enhancing individuals' awareness of key attachment figures did not increase participants' willingness to engage in end-of-life conversations. However, heightened attachment awareness led participants to talk more about their relationship with the person they were hypothetically talking with. Across both experiments, avoidant attachment tendencies reduced the likelihood that participants receiving the attachment prime would want to engage in end-of-life conversation. Overall, it seems there are important differences between individuals on willingness to talk about death, and this may be influenced by one's attachment style. These results raise implications for the importance of attachment in the therapeutic relationship for healthcare professionals working with young people with life-limiting illnesses, such as cancer. Further research may shed light on how an individually tailored approach, taking into account attachment security, achieves the best outcomes for individuals who require end-of-life conversations.

Unmet needs in people with high-grade glioma: defining criteria for stepped care intervention.

BACKGROUND: We aimed to define levels of unmet supportive care needs in people with primary brain tumor and to reach expert consensus on feasibility of addressing patients' needs in clinical practice. METHODS: We conducted secondary analysis of a prospective cohort study of people diagnosed with high-grade glioma (n = 116) who completed the Supportive Care Needs Survey-Short Form during adjuvant chemoradiation therapy. Participants were allocated to 1 of 3 categories: no need ("no need" for help on all items), low need ("low need" for help on at least 1 item, but no "moderate" or "high" need), or moderate/high need (at least 1 "moderate" or "high" need indicated). Clinical capacity to respond to the proportion of patients needing to be prioritized was assessed. RESULTS: Overall, 13% (n = 5) were categorized as no need, 23% (n = 27) low need, and 64% (n = 74) moderate/high need. At least 1 moderate/high need was reported in the physical and daily living domain (42%) and the psychological (34%) domain. In recognition of health system capacity, the moderate/high need category was modified to distinguish between moderate need ("moderate" need indicated for at least 1 item but "high" need was not selected for any item) and high need (at least 1 "high" need indicated). Results revealed 24% (n = 28) moderate need and 40% (n = 46) high need. Those categorized as high need indicated needing assistance navigating the health system and information. CONCLUSIONS: Using four step allocations resulted in 40% of patients indicating high need. Categories may facilitate appropriate triaging and guide stepped models of healthcare delivery.

Co-designing strategies to improve advance care planning among people from culturally and linguistically diverse backgrounds with cancer: iCanCarePlan study protocol.

BACKGROUND: Advance care planning (ACP) describes the process of supporting individuals at any age or stage of health to consider and share their personal values, life goals, and preferences regarding future health care. Engaging in ACP is associated with better-quality of care in which people receive care in lines with their wishes, values and preferences. Direct translations of ACP guides and resources do not attend to the considerable inter- and intra-ethnic variations in cultural and religious or spiritual beliefs that shape preferences among people from culturally and linguistically diverse (CALD) backgrounds. ICanCarePlan is a three-year project that aims to determine the prevalence of ACP documentation among people from CALD backgrounds with cancer, identify resources available and their use to support ACP among CALD communities, identify barriers and facilitators of person-centred ACP, and to develop, through co-design with consumers and clinicians, approaches that enhance the process ACP for people from CALD backgrounds. METHOD: A mixed-method sequential approach will be used comprising of four studies. Study one is retrospective medical record review of approximately 1500 medical records to establish the prevalence of ACP documentation among CALD patient records in cancer services. Study two is a document analysis synthesising the resources available in the Australian health system to support ACP. Study three is a qualitative study with healthcare staff and consumers to explore barriers and enablers of person-centred ACP. Evidence generated from studies one to three will inform the conduct of co-design with stakeholders to develop approaches to improve ACP processes among CALD communities. Language, technical and financial support for meaningful involvement with consumers from CALD backgrounds throughout this project is outlined. A plan for distress management is also made due to sensitive nature of the topic. The research project has also established a project steering group consisting of three consumer members who are from CALD backgrounds. DISCUSSION: The project will address a national priority issue for a growing population of CALD communities in Australia. The project will provide novel evidence of ACP among CALD communities and novel strategies developed with stakeholders to enhance uptake and experiences of ACP.

Social Anxiety Symptoms in Adolescents and Young Adults Recently Diagnosed with Cancer.

Purpose: Social anxiety disorder (SAD) remains an understudied potential link between the cancer experience and adolescent and young adult (AYA) cancer survivors' poor psychosocial outcomes. We investigated the frequency and duration of, as well as factors associated with, symptoms of SAD among AYAs with cancer. Methods: This longitudinal, mixed-methods study involved online surveys (including a validated screening tool for SAD) at recruitment and 6 months later, and a structured clinical interview. Results: Twenty-eight AYAs (aged 12-30 years, <1-year postdiagnosis, 50% male) completed the first survey (M = 6 months postdiagnosis). About 32% reported clinically significant SAD symptoms. Fourteen completed the follow-up survey (M = 12 months postdiagnosis), of which 9 (62%) reported persistent or worse symptoms of SAD significantly associated with emotional distress, physical appearance concerns, negative social cognitions, and depression. Conclusion: A subset of AYAs with cancer may experience clinically significant SAD symptoms that can affect their psychosocial well-being. Further work on how to best identify and support AYAs with SAD is needed.

Exploring Web-Based Information and Resources That Support Adolescents and Young Adults With Cancer to Resume Study and Work: Environmental Scan Study.

BACKGROUND: Adolescents and young adults (AYAs) diagnosed with cancer experience physical, cognitive, and psychosocial effects from cancer treatment that can negatively affect their ability to remain engaged in education or work through cancer treatment and in the long term. Disengagement from education or work can have lasting implications for AYAs' financial independence, psychosocial well-being, and quality of life. Australian AYAs with cancer lack access to adequate specialist support for their education and work needs and report a preference for web-based support that they can access from anywhere, in their own time. However, it remains unclear what web-based resources exist that are tailored to support AYAs with cancer in reaching their educational or work goals. OBJECTIVE: This study aimed to determine what web-based resources exist for Australian AYAs with cancer to (1) support return to education or work and (2) identify the degree to which existing resources are age-specific, cancer-specific, culturally inclusive, and evidence-based; are co-designed with AYAs; use age-appropriate language; and are easy to find. METHODS: We conducted an environmental scan by searching Google with English search terms in August 2022 to identify information resources about employment and education for AYAs ever diagnosed with cancer. Data extraction was conducted in Microsoft Excel, and the following were assessed: understandability and actionability (using the Patient Education and Materials Tool), readability (using the Sydney Health Literacy Laboratory Health Literacy Editor), and whether the resource was easy to locate, evidence-based, co-designed with AYAs, and culturally inclusive of Aboriginal and Torres Strait Islander peoples. The latter was assessed using 7 criteria previously developed by members of the research team. RESULTS: We identified 24 web-based resources, comprising 22 written text resources and 12 video resources. Most resources (21/24, 88%) were published by nongovernmental organizations in Australia, Canada, the United States, and the United Kingdom. A total of 7 resources focused on education, 8 focused on work, and 9 focused on both education and work. The evaluation of resources demonstrated poor understandability and actionability. Resources were rarely evidence-based or co-designed by AYAs, difficult to locate on the internet, and largely not inclusive of Aboriginal and Torres Strait Islander populations. CONCLUSIONS: Although web-based resources for AYAs with cancer are often available through the websites of hospitals or nongovernmental organizations, this environmental scan suggests they would benefit from more evidence-based and actionable resources that are available in multiple formats (eg, text and audio-visual) and tailored to be age-appropriate and culturally inclusive.

Guidelines for Caring for the Social Well-Being of Adolescents and Young Adults with Cancer in Australia.

More than 1000 Australian adolescents and young adults (AYAs) are diagnosed with cancer annually. Many report unmet social well-being needs, which impact their mental health. Australian AYA cancer care providers lack guidance to address these needs well. We aimed to develop guidelines for caring for the social well-being of AYAs with cancer in Australia. Following the Australian National Health and Medical Research Council guidance, we formed a multidisciplinary working group (n = 4 psychosocial researchers, n = 4 psychologists, n = 4 AYA cancer survivors, n = 2 oncologists, n = 2 nurses, and n = 2 social workers), defined the scope of the guidelines, gathered evidence via a systematic review, graded the evidence, and surveyed AYA cancer care providers about the feasibility and acceptability of the guidelines. The guidelines recommend which AYAs should have their social well-being assessed, who should lead that assessment, when assessment should occur with which tools/measures, and how clinicians can address AYAs' social well-being concerns. A key clinician, who is knowledgeable about AYAs' developmental needs, should lead the assessment of social well-being during and after cancer treatment. The AYA Psycho-Oncology Screening Tool is recommended to screen for social well-being needs. The HEADSSS Assessment (Home, Education/Employment, Eating/Exercise, Activities/Peer Relationships, Drug use, Sexuality, Suicidality/Depression, Safety/Spirituality Assessment) can be used for in-depth assessment of social well-being, while the Social Phobia Inventory can be used to assess social anxiety. AYA cancer care providers rated the guidelines as highly acceptable, but discussed many feasibility barriers. These guidelines provide an optimal care pathway for the social well-being of AYAs with cancer. Future research addressing implementation is critical to meet AYAs' social well-being needs.

Post-traumatic growth in parents of long-term childhood cancer survivors compared to the general population: A report from the Swiss childhood cancer survivor study-Parents.

OBJECTIVE: Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG. METHODS: CCS-parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. RESULTS: In total, 746 CCS-parents (41.7% fathers, response-rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate = 20.1%) participated. Mean [M] total PTG was in CCS-parents M = 52.3 versus comparison-parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p = 0.010), 'spiritual-change' (3.3 vs. 3.0, p = 0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p = 0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. CONCLUSIONS: Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope.

Anticipatory anxiety and participation in cancer screening. A systematic review.

OBJECTIVES: To synthesize current evidence on the association between anticipatory anxiety, defined as apprehension-specific negative affect that may be experienced when exposed to potential threat or uncertainty, and cancer screening to better inform strategies to maximize participation rates. METHODS: Searches related to cancer screening and anxiety were conducted in seven electronic databases (APA PsycINFO, Scopus, Web of Science, Embase, Cochrane Library, PubMed, CINAHL), with potentially eligible papers screened in Covidence. Data extraction was conducted independently by multiple authors. Barriers to cancer screening for any type of cancer and relationships tested between anticipatory anxiety and cancer screening and intention were categorized and compared according to the form and target of anxiety and cancer types. RESULTS: A total of 74 articles (nparticipants  = 119,990) were included, reporting 103 relationships tested between anticipatory anxiety and cancer screening and 13 instances where anticipatory anxiety was reported as a barrier to screening. Anticipatory anxiety related to a possible cancer diagnosis was often associated with increased screening, while general anxiety showed no consistent relationship. Negative relationships were often found between anxiety about the screening procedure and cancer screening. CONCLUSION: Anticipatory anxiety about a cancer diagnosis may promote screening participation, whereas a fear of the screening procedure could be a barrier. Public health messaging and primary prevention practitioners should acknowledge the appropriate risk of cancer, while engendering screening confidence and highlighting the safety and comfort of screening tests.

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.

Examining the Cultural Appropriateness of Advance Care Planning Tools for Adolescents and Young Adults With Cancer: An Example of Cross-Cultural Adaptation of the Voicing My CHOiCES Tool.

Advance care planning (ACP) is crucial in supporting optimal, patient-centered care for adolescents and young adults (AYAs) with life-limiting illnesses and can reduce unwanted outcomes at end-of-life. While several ACP tools and interventions have been designed for AYAs, most of these were developed in the United States of America (USA). This paper describes a study designed to adapt the AYA ACP tool, Voicing My CHOiCES (VMC), for the Australian population. A 2-stage mixed methods approach was used. Stage 1 involved a multiperspective interview to determine changes for the new Australian VMC. Participants were AYAs between the ages of 15 to 25, healthcare professionals, and parents. For each section, participants responded to questions targeting the helpfulness and usefulness of the items as well as open-ended questions about any suggested content or formatting changes. Stage 2 used think-aloud interviews asking AYA cancer patients and survivors aged between 15 and 39 years to respond to proposed changes for the Australian VMC. Stage 1 participants suggested changes to all pages of VMC, with proposed changes being based around language, content, and format. Stage 2 participants qualitatively confirmed the acceptability of these changes. Our data suggests that even between similar Western cultures, significant adaptations can be made to make ACP tools more culturally appropriate. More research is needed to further adapt ACP tools like VMC for culturally and linguistically diverse groups and to ensure these tools can be accessed by all AYAs with life-limiting illness.

The effects of cancer clinical decision support systems on patient-reported outcomes: A systematic review.

PURPOSE: The implementation of high-quality decision-making support are integral to ensuring the delivery of quality cancer care and subsequently achieving positive patient outcomes. Decision Support Systems (DSS) are increasingly used, however it is not known what the effects are beyond supporting the decision-making process. We aimed to identify and synthesize the available literature regarding the effects of DSS on patient-reported outcomes both during and after cancer treatment. METHODS: A systematic review was conducted using dual processes to identify empirical literature that reported an evaluation of DSS interventions and patient-reported outcomes. We appraised study quality using the Mixed Methods Appraisal Tool (MMAT). Data were narratively synthesized. RESULTS: We included 15 studies, categorized as symptom assessment interventions or interactive educational interventions. Findings were mixed regarding the effectiveness of DSS interventions in improving total symptom distress and severity, whereas the majority were effective in reducing mean scores for worst and usual pain. Interventions were not effective in improving other health-related patient-reported outcomes including quality of life, global distress, depression, or self-efficacy and there were mixed effects for reducing decisional conflict. There was moderate to high patient adherence to the interventions and generally high satisfaction and acceptability, yet minimal evidence for the effect of DSS interventions in clinician adherence to intervention recommendations. CONCLUSIONS: Including patient-reported outcomes in the evaluation of DSS is critical to understand their impact. Inconsistencies in reporting of interventions may, however, be a contributing factor to heterogeneous effects of clinical DSS regarding a broad range of patient-reported outcomes.

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.

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

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

Optimising implementation of telehealth in oncology: A systematic review examining barriers and enablers using the RE-AIM planning and evaluation framework.

Telehealth facilitates access to cancer care for patients unable to attend in-person consultations, as in COVID-19. This systematic review used the reach, effectiveness, adoption, implementation, and maintenance (RE-AIM) framework to evaluate telehealth implementation and examine enablers and barriers to optimal implementation in oncology. MEDLINE, PubMed, CINAHL, and the Cochrane Database of Systematic Reviews were searched between January 2011-June 2022. Eighty-two articles representing 73 studies were included. One study explicitly used the RE-AIM framework to guide study design, conduct, or reporting. Reach (44%) and implementation (38%) were most commonly reported, maintenance (5%) least commonly. Key telehealth implementation enablers included professional-led delivery, patient-centred approaches, and positive patient perceptions. Key barriers included patient discomfort with technology, limited supporting clinic infrastructure, and poor access to reliable internet connection and videoconferencing. While a patient-centred and professional-supported approach enables telehealth implementation, technology and infrastructure constraints need surmounting for sustained implementation beyond the COVID-19 pandemic.

'Like ships in the night': A qualitative investigation of the impact of childhood cancer on parents' emotional and sexual intimacy.

BACKGROUND: Childhood cancer is highly distressing for families and can place strain on parents' relationships. Parental functioning and cohesiveness are important predictors of family functioning and adaptation to stress. This qualitative study investigated the perceived impact of childhood cancer on parents' relationship with their partner, with a focus on emotional and sexual intimacy. METHODS: We conducted semi-structured interviews with 48 parents (42 mothers, six fathers) of children under the age of 18 who had completed curative cancer treatment. We analysed the interviews using thematic analysis. RESULTS: At interview, parents were on average 40.7 years old (SD = 5.5, range: 29-55 years), and had a child who had completed cancer treatment between 3 months and 10.8 years previously (M = 22.1 months). All participants were living with their partner in a married/de facto relationship. Most parents reported that their child's cancer treatment had a negative impact on emotional and sexual intimacy with their partner, with some impacts extending to the post-treatment period. Reasons for compromised intimacy included exhaustion and physical constraints, having a shifted focus, and discord arising from different coping styles. Some parents reported that their relationship strengthened. Parents also discussed the impact of additional stressors unrelated to the child's cancer experience. CONCLUSIONS: Parents reported that childhood cancer had a negative impact on aspects of emotional and sexual intimacy, although relationship strengthening was also evident. It is important to identify and offer support to couples who experience ongoing relationship stress, which may have adverse effects on family functioning and psychological wellbeing into survivorship.

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

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

Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer.

For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many health-professionals do not feel confident leading these conversations, leaving gaps in the implementation of best-practice end-of-life communication. We present a protocol for a Delphi study informing the development and implementation of clinician training to strengthen health-professionals' capacity in end-of-life conversations. Our approach will inform training to address barriers to end-of-life communication with adolescents and young adults across Westernized Adolescent and Young Adult Cancer Global Accord countries. The Adolescent and Young Adult Cancer Global Accord team involves 26 investigators from Australia, New Zealand, the United States, Canada and the United Kingdom. Twenty-four consumers, including adolescents and young adults with cancer history and carers, informed study design. We describe methodology for a modified Delphi questionnaire. The questionnaire aims to determine optimal timing for end-of-life communication with adolescents and young adults, practice-related content needed in clinician training for end-of-life communication with adolescents and young adults, and desireability of evidence-based training models. Round 1 involves an expert panel of investigators identifying appropriate questionnaire items. Rounds 2 and 3 involve questionnaires of international multidisciplinary health-professionals, followed by further input by adolescents and young adults. A second stage of research will design health-professional training to support best-practice end-of-life communication. The outcomes of this iterative and participatory research will directly inform the implementation of best-practice end-of-life communication across Adolescent and Young Adult Cancer Global Accord countries. Barriers and training preferences identified will directly contribute to developing clinician-training resources. Our results will provide a framework to support further investigating end-of-life communication with adolescents and young adults across diverse countries. Our experiences also highlight effective methodology in undertaking highly collaborative global research.

A systematic review of diagnostic tests to detect pelvic floor myofascial pain.

INTRODUCTION AND HYPOTHESIS: Myofascial pain arising from pelvic floor muscles occurs in women with vaginismus, interstitial cystitis and endometriosis but is often overlooked. The aim is to examine alternative diagnostic tests to detect pelvic floor myofascial pain compared with standardized vaginal palpation of pelvic floor muscles as the reference test. METHODS: A systematic review was prospectively conducted (PROSPERO-CRD42020183092) according to PRISMA guidelines. Databases searched included Ovid Medline 1946-, Embase 1957-, Scopus 1960-, Cochrane Combined, Clinical trials, Google Scholar (top 200 articles), Web of Science, TRIP, BIOSIS, DARE, CINHAL, EmCare, PEDro, ProQuest and EBSCOhost up to July 2020. Articles were independently screened by two authors and assessed for bias using QUASDAS-2 tool. RESULTS: A total of 26,778 articles were screened and 177 were selected for full text review, of which 5 were selected for final analysis. Five studies included 9694 participants of which 1628 had pelvic floor myofascial pain. Only one study reported data to calculate sensitivities and specificities of the index test, which utilized a score of > 40 on the Central Sensitization Inventory to detect women with pelvic floor myofascial pain and revealed a sensitivity of 34.8% and a specificity of 84.9% compared to the reference test. CONCLUSIONS: This systematic review did not reveal any diagnostic test superior to the pre-defined reference test. There is a lack of consensus on the definition of pelvic floor myofascial pain and a lack of a validated diagnostic criteria which must be addressed to progress with meaningful research in this field.