Co-design and evaluation of pain science messages on social media with adolescents with a history of chronic pain.

Pain science education is an important component of paediatric pain care; however, access to services is limited. To disseminate pain science concepts on social media, we partnered with adolescents with chronic pain to co-design content. We engaged seven adolescent co-designers (aged 13-18 years) with lived experience of chronic pain to take part in four co-design workshops. Co-designers actively contributed to the social media campaign by selecting the social media platform, dictating design principles, generating metaphors and language, and recommending changes of mock designs. Co-designers suggested expanding the intended audience of the campaign to include people without a lived experience of chronic pain, such as friends, family, and teachers, alongside targeting adolescents with chronic pain. We published 30 posts and 102 stories over an 18-week period on Instagram, that reached over 40,000 individuals. We evaluated co-designers experience, where they reported having clear communication and necessary supports and information to participate; were able to share their ideas and felt they were heard; and felt their input was making a difference. The outputs of this campaign could be useful to guide the tailoring of other pain science education content delivered by clinicians as part of clinical care. Future testing of the content generated in this co-design process could evaluate if it leads to meaningful changes to the lives of people with chronic pain. PERSPECTIVE: Researchers partnered with adolescents with chronic pain to co-design content for a social media campaign on pain science education. Adolescent co-designers actively shaped the campaign direction, broadening its scope to reach diverse audiences. Our Instagram initiative reached over 40,000 individuals, indicating the potential for innovative educational approaches.

"I wish I knew then what I know now" - pain science education concepts important for female persistent pelvic pain: a reflexive thematic analysis.

ABSTRACT: Pain science education (PSE) provides people with an understanding of "how pain works" grounded in the biopsychosocial model of pain; it has been demonstrated to improve outcomes in musculoskeletal pain conditions. Preliminary evidence suggests PSE may be effective for female individuals with persistent pelvic pain, but how the content of PSE needs to be modified for this group remains to be determined. A reflexive thematic analysis of qualitative data was performed to identify PSE concepts that female individuals with persistent pelvic pain consider important and why. Twenty individual, semistructured interviews were conducted with adult females who had engaged with PSE and had self-identified as having "improved" pelvic pain. Most participants had been diagnosed with endometriosis (n = 16). Four themes were generated capturing PSE concepts considered important by female individuals with "improved" pelvic pain: (1) "A sensitised nervous system leads to overprotective pain" validated their pelvic pain as being real; (2) "Pain does not have to mean the body is damaged (although sometimes it does)" provided reassurance that pelvic pain does not mean their condition is worsening; (3) "How I think, feel, and 'see' my pain can make it worse" enabled participants to find optimal ways to manage their pain; and (4) "I can change my pain… slowly" provided hope that pelvic pain can improve and empowered them to pursue pain improvement as a viable goal. This study generated 4 PSE learning concepts that were important to female individuals with improved pelvic pain and may be incorporated into PSE curricula for female individuals with pelvic pain.

Cancer Survivorship at Stanford Cancer Institute.

The Stanford Cancer Survivorship Program is a key initiative of Stanford Cancer Institute. The program's mission is to improve the experience and outcomes of patients and family caregivers throughout all phases of the cancer trajectory by advancing survivorship research, clinical care, and education. The four pillars of the program include clinical care delivery with a focus on primary care-survivorship collaboration and expanding specialty services, education and training of healthcare professionals, transdisciplinary patient-oriented research, and community engagement. Cross-cutting areas of expertise include the following: (a) adolescents and young adults (AYAs), (b) mental health and patient self-management, (c) integration of primary care, and (d) postgraduate medical education. The clinical care model includes embedded survivorship clinics within disease groups in outpatient clinics, novel clinics designed to address unmet needs such as sexual health for women, and primary care-based faculty-led survivorship clinics for patients undergoing active cancer care requiring co-management, those who have completed active therapy and those at high risk for cancer due to genetic risk. Educational initiatives developed to date include an online course and medical textbook for primary care clinicians, a lecture series, monthly research team meetings, and rotations for medical trainees. Patient-facing activities include webinars and a podcast series designed to promote awareness, thus expanding the provision of expert-vetted information. Ongoing research focuses on oncofertility and family building after cancer, improving communication for AYAs, changing mindsets to improve quality of life through targeted digital interventions, increasing capacity to care for cancer survivors, and strengthening collaboration with community partners. IMPLICATIONS FOR CANCER SURVIVORS: Stanford's Cancer Survivorship Program includes a robust transdisciplinary and interdisciplinary research, training and clinical platform that is committed to advancing access and improving care for people living with and beyond cancer, through innovation in design and care delivery.

Mind and skin: Exploring the links between inflammation, sleep disturbance and neurocognitive function in patients with atopic dermatitis.

Atopic dermatitis (AD) is a chronic, pruritic and inflammatory, dry skin condition with many known comorbidities. These include airway disease, food allergies, atopic eye disease and autoimmune conditions. Furthermore, there is often significant sleep disturbance as well as increased psychological distress and mental health problems. Severe AD therefore often has a significant impact on the quality of life of both patients and their families. In this review we discuss recent findings on the putative links between AD, its association with itch, sleep disturbance and neuropsychiatric morbidity, including the role of inflammation in these conditions. Itch was thought to predominantly drive sleep disruption in AD. We now understand changes in sleep influence immune cell distribution and the associated inflammatory cytokines, which suggests a bidirectional relationship between AD and sleep. We also increasingly recognize inflammation as a key driver in psychological symptoms and disorders. The link between cutaneous, systemic and possible brain inflammation could at least in part be driven by the sleep deprivation and itch-driven neuronal proliferation seen in AD.

The Sensation and Pain Rating Scale: easy to use, clear to interpret, and responsive to clinical change.

Background: The Sensation and Pain Rating Scale (SPARS) allows rating of non-painful as well as painful percepts. While it performs well in the experimental context, its clinical utility is untested. This prospective, repeated-measures study mixed qualitative and quantitative methods to examine the utility and performance of the SPARS in a clinical context, and to compare it with the widely used 11-point NRS for pain. Methods: People presenting for outpatient physiotherapy (n = 121) provided ratings on the SPARS and NRS at first consultation, before and after sham and active clinical interventions, and at follow-up consultation. Clinicians (n = 9) reported each scale's usability and interpretability using Likert-type scales and free text, and answered additional questions with free text. Each data type was initially analysed separately: quantitative data were visualised and the ES II metric was used to estimate SPARS internal responsiveness; qualitative data were analysed with a reflexive inductive thematic approach. Data types were then integrated for triangulation and complementarity. Results: The SPARS was well received and considered easy to use, after initial familiarisation. Clinicians favoured the SPARS over the NRS for clarity of interpretation and inter-rater reliability. SPARS sensitivity to change was good (ESII=0.9; 95%CI: 0.75-1.10). The greater perceptual range of the SPARS was deemed especially relevant in the later phases of recovery, when pain may recede into discomfort that still warrants clinical attention. Conclusion: The SPARS is a promising tool for assessing patient percept, with strong endorsement from clinicians for its clarity and superior perceptual scope.

Body Mindsets are Associated With Pain and Threat-Related Risk Factors for Pain in Survivors of Childhood Cancer.

Pain is a common consequence of childhood cancer. While most research has examined biomedical predictors of post-cancer pain, biopsychosocial conceptualisations such as the cancer threat interpretation (CTI) model hold promise for guiding comprehensive pain management strategies. Guided by the CTI model, this cross-sectional study evaluated correlates of post-cancer pain in childhood cancer survivors including threat-related risk factors (bodily threat monitoring, fear of cancer recurrence, help-seeking) and mindsets about the body. In the preceding three months, 21.8% of the survivors reported chronic pain (>3 months), and 14.3% experienced pain most days. Greater bodily threat monitoring, more fear of cancer recurrence, and more help-seeking were associated with more pain. There was heterogeneity in the mindsets that survivors of childhood cancer hold about their bodies. Holding the mindset that the 'body is an adversary' was associated with more pain, greater bodily threat monitoring, and more fear of cancer recurrence. Holding the mindset that the 'body is responsive' was associated with less bodily threat monitoring, while the mindset that the 'body is capable' was associated with greater help-seeking. A path model demonstrated a significant combined indirect effect of the 'body is an adversary' mindset on pain through bodily threat monitoring and fear of cancer recurrence. Overall, this study supported that a sub-group of childhood cancer survivors experience persistent and interfering pain and provided cross-sectional support for threat-related correlates for pain aligning with the CTI model. Body mindsets were associated with pain and threat-related correlates and may represent a novel target to support survivors with pain. PERSPECTIVE: This article presents associations of body mindsets, threat-related risk factors, and pain in survivors of childhood cancer (aged 11-25), guided by the Cancer Threat Interpretation model. The study indicates that body mindsets may be novel targets to embed in comprehensive post-cancer pain management approaches to support young survivors with pain.

The bodily threat monitoring scale: Development and preliminary validation in adult and childhood cancer survivors.

OBJECTIVE: Bodily threat monitoring is a core clinical feature of Fear of cancer recurrence (FCR) and is targeted in psycho-oncology treatments, yet no comprehensive self-report measure exists. The aim of this study was the theory-informed development and initial validation of the Bodily Threat Monitoring Scale (BTMS). METHODS: Adult survivors of breast and gynaecological cancers (Study 1: N = 306, age = 37-81 years) and childhood cancer survivors (Study 2: N = 126, age = 10-25 years) completed the BTMS, designed to assess how individuals monitor for and interpret uncertain symptoms as indicating that something is wrong with their body. Participants completed measures to assess construct and criterion validity of the BTMS, and childhood cancer survivors (Study 2) completed the BTMS again 2 weeks later to assess test-retest reliability. RESULTS: The 19-item BTMS demonstrated excellent internal consistency across adult and childhood cancer samples (α = 0.90-0.96). Factor analyses indicated two subscales capturing 1. Monitoring of bodily sensations and 2. Threatening interpretations of bodily sensations. Two-week stability estimates were acceptable. For construct validity, the BTMS correlated with body vigilance and anxiety sensitivity. The BTMS also demonstrated criterion validity, yielding significant associations with FCR, intolerance of uncertainty, help-seeking behaviours, and quality of life. The BTMS was associated with FCR while controlling for body vigilance and anxiety sensitivity, indicating a unique contribution of this theory-informed measure. CONCLUSIONS: The BTMS shows evidence of sound psychometric properties and could be used to elucidate the role of bodily threat monitoring in the maintenance and management of FCR.

Effects of a Cognitive Behavioral Digital Therapeutic on Anxiety and Depression Symptoms in Patients With Cancer: A Randomized Controlled Trial.

PURPOSE: Patients with cancer often experience elevated levels of distress. This double-blind, randomized controlled trial compared the impact of an app-based version of cognitive behavioral stress management (CBSM) versus a health education sham app on anxiety and depression symptoms. METHODS: Patients with nonmetastatic (stage I-III) cancer who were receiving or recently completed (≤6 months) systemic treatment were recruited nationwide. The primary outcome of change in anxiety symptoms (PROMIS-Anxiety) over 12 weeks and the top secondary outcome of change in depression symptoms (PROMIS-Depression) over 12 weeks were analyzed using mixed-effects modeling with repeated measures (weeks 0, 4, 8, 12). Patient global impressions of change in anxiety and depression were reported at weeks 4, 8, and 12. In addition, self-reported adverse events were collected throughout the study and adjudicated by the site principal investigator. RESULTS: Four hundred forty-nine patients were enrolled in the trial (age M [standard deviation] = 52.44 [11.46]; 81% female; 76% White; 53% breast cancer). Patients randomly assigned to digitized CBSM showed significantly greater reductions in anxiety (B = -0.03; P = .019) and depression (B = -0.02; P = .042) symptoms over 12 weeks. Patients who received digitized CBSM were also significantly more likely to perceive much or very much improvement (v no/minimal change or much/very much worse) in their symptoms of anxiety (χ2 = 31.76; P < .001) and depression (χ2 = 19.70; P < .001) compared with the control. CONCLUSION: The use of digitized CBSM led to significant improvements in anxiety and depression outcomes compared with the sham app.

Changing Mindsets About Side Effects of the COVID-19 Vaccination: A Randomized Controlled Trial.

BACKGROUND: Side-effect concerns are a major barrier to vaccination against COVID-19 and other diseases. Identifying cost- and time-efficient interventions to improve vaccine experience and reduce vaccine hesitancy-without withholding information about side effects-is critical. PURPOSE: Determine whether a brief symptom as positive signals mindset intervention can improve vaccine experience and reduce vaccine hesitancy after the COVID-19 vaccination. METHODS: English-speaking adults (18+) were recruited during the 15-min wait period after receiving their second dose of the Pfizer COVID-19 vaccination and were randomly allocated to the symptom as positive signals mindset condition or the treatment as usual control. Participants in the mindset intervention viewed a 3:43-min video explaining how the body responds to vaccinations and how common side effects such as fatigue, sore arm, and fever are signs that the vaccination is helping the body boost immunity. The control group received standard vaccination center information. RESULTS: Mindset participants (N = 260) versus controls (N = 268) reported significantly less worry about symptoms at day 3 [t(506)=2.60, p=.01, d=0.23], fewer symptoms immediately following the vaccine [t(484)=2.75, p=.006, d=0.24], and increased intentions to vaccinate against viruses like COVID-19 in the future [t(514)=-2.57, p=.01, d=0.22]. No significant differences for side-effect frequency at day 3, coping, or impact. CONCLUSIONS: This study supports the use of a brief video aimed at reframing symptoms as positive signals to reduce worry and increase future vaccine intentions. CLINICAL TRIAL INFORMATION: Australian New Zealand Clinical Trials Registry: ACTRN12621000722897p.

Side-effect concerns are a major barrier to vaccination against COVID-19 and other diseases. Therefore, the purpose of this study was to determine whether a brief symptom as positive signals mindset intervention could improve vaccine experience and reduce vaccine hesitancy after the COVID-19 vaccination. Participants were recruited during the 15-min wait period after receiving their second dose of the Pfizer COVID-19 vaccination and were randomly allocated to a treatment as usual control condition or to a mindset intervention condition which entailed watching a 3:43-min video explaining how the body responds to vaccinations and how common side effects such as fatigue, sore arm, and fever are signs that the vaccination is helping the body boost immunity. Compared with participants in the control condition, participants in the mindset intervention condition reported significantly less worry about symptoms at day 3, fewer symptoms immediately following the vaccine and increased intentions to vaccinate against viruses like COVID-19 in the future. No significant differences emerged for side-effect frequency at day 3, coping, or impact. These finding provide initial support for cost- and time-efficient interventions to improve vaccine experience and reduce vaccine hesitancy without withholding information about side effects.

Scanxiety among Adults with Cancer: A Scoping Review to Guide Research and Interventions.

Background: Scan-related anxiety ("scanxiety") is distressing to people living with and beyond cancer. We conducted a scoping review to promote conceptual clarity, identify research practices and gaps, and guide intervention strategies for adults with a current or prior cancer diagnosis. Methods: Following a systematic search, we screened 6820 titles and abstracts, evaluated 152 full-text articles, and selected 36 articles. Definitions, study designs, measurement methods, correlates, and consequences of scanxiety were extracted and summarized. Results: The reviewed articles included individuals living with current cancer (n = 17) and those in the post-treatment phase (n = 19), across a breadth of cancer types and disease stages. In five articles, authors explicitly defined scanxiety. Multiple components of scanxiety were described, including those related to scan procedures (e.g., claustrophobia, physical discomfort) and scan results (e.g., implications for disease status and treatment), suggesting varied intervention approaches may be needed. Twenty-two articles used quantitative methods, nine used qualitative methods, and five used mixed methods. In 17 articles, symptom measures specifically referenced cancer scans; 24 included general measures without reference to scans. Scanxiety tended to be higher among those with lower education levels, less time since diagnosis, and greater baseline anxiety levels (three articles each). Although scanxiety often decreased immediately pre- to post-scan (six articles), participants reported the waiting period between scan and results to be particularly stressful (six articles). Consequences of scanxiety included poorer quality of life and somatic symptoms. Scanxiety promoted follow-up care for some patients yet hindered it for others. Conclusions: Scanxiety is multi-faceted, heightened during the pre-scan and scan-to-results waiting periods, and associated with clinically meaningful outcomes. We discuss how these findings can inform future research directions and intervention approaches.

The Impact of the Early COVID-19 Global Pandemic on Children Undergoing Active Cancer Treatment and Their Parents.

(1) Background: The COVID-19 global pandemic has impacted people worldwide with unique implications for vulnerable groups. In this cross-sectional study, we examined the impact of the early pandemic on children undergoing active cancer treatment and their parents. (2) Methods: In May 2020, 30 parents of children undergoing active cancer treatment completed an online survey regarding the impact of COVID-19 on their child's cancer care, perceived utility of telemedicine, and child and parent mental health status. (3) Results: Most participants (87%) reported that they did not experience any changes to major cancer treatments. Among those who reported using telemedicine, 78% reported this to be beneficial. Over half of the participants reported that their child's mental health status was worse now than prior to the COVID-19 global pandemic. Parent-reported child anxiety scores were significantly higher for those who reported changes to mental health care for their child compared to those who did not report the same, t(25.99) = -3.04, p = 0.005. (4) Conclusion: Child and parent mental health status were affected when compared to pre-pandemic. Telemedicine appears to be a promising complement to face-to-face meetings for some families and warrants further exploration.

International Survey of Pediatric Oncologists' Beliefs and Communication Practices Regarding Symptom Self-Monitoring by Childhood Cancer Survivors.

PURPOSE: Childhood cancer survivors report self-monitoring for and worrying about symptoms of disease recurrence and secondary cancers, although symptom-related worry is associated with poorer health-related quality of life. This survey captured pediatric oncologists' beliefs and communication practices regarding symptom self-monitoring for childhood cancer survivors. METHODS: Using a closed-loop snowball sampling technique, pediatric oncologists completed an online survey regarding the importance of symptom self-monitoring for off-therapy patients, the degree to which symptom self-monitoring was perceived to cause stress and worry, and communication practices. RESULTS: 196 pediatric oncologists (White [78%]; female [64%]; Mage = 47 years) from every continent except Antarctica participated. Oncologists believed it is important for off-therapy patients to self-monitor for symptoms of cancer recurrence (90%) and treatment late effects (94%), although some noted that recurrence (30%) and late effects (55%) are typically detected by routine surveillance before symptoms appear. Oncologists varied in their beliefs that off-therapy patients do (31%) or do not (31%) worry unnecessarily about symptoms of recurrence. Two thirds (62%) of oncologists reported often/always discussing with off-therapy patients which symptoms could indicate cancer recurrence, whereas fewer than half (43%) often/always discussed which symptoms were unlikely to indicate recurrence. Oncologists identified a need for education regarding how to communicate around symptom self-monitoring and the potential utility of a screening tool to identify those who worry excessively. CONCLUSION: Despite nearly universal belief that their off-therapy patients should self-monitor for symptoms of disease recurrence and late effects, a substantial proportion of pediatric oncologists do not counsel patients on symptom self-monitoring. Since nearly one-third believe that off-therapy patients worry unnecessarily about symptoms of recurrence, improving patient education regarding which symptoms are and are not medically concerning could decrease stress and improve health-related quality of life for pediatric cancer survivors.

"You don't accept he's completely ok": a reflexive thematic analysis of parents' roles in monitoring their child's health and symptoms after finishing childhood cancer treatment.

OBJECTIVES/PURPOSE: Childhood cancer survival brings continued mental and physical health challenges both for the child and for the family. In this study, we investigated how parents viewed their roles in their child's health and symptom monitoring during the survivorship period. METHODS: Twenty-one parents of childhood cancer survivors (n = 18 mothers; parent mage = 49.78 years, child mage = 18.50 years; range = 12-25 years), whose children were at least one year off-treatment (m = 3.67 years; SD = 2.25; various diagnoses), completed semi-structured interviews. Interviews were recorded, transcribed, and analyzed using reflexive thematic analysis. RESULTS: Analyses generated three themes which reflect roles that parents may adopt in the context of monitoring symptoms in their childhood cancer survivor. "Vigilant Mama and Papa" (theme 1) described parents who expressed a strong sense of responsibility for protecting their child's health during survivorship resulting in careful monitoring of their child's symptoms and health. "Pragmatic Mamas and Papas" (theme 2) described parents who adopted an approach to symptom and health monitoring that emphasized moving past cancer and focusing on the future. Finally, "Encouraging Mamas and Papas" (theme 3) described parents who focused on educating and preparing their child to develop an autonomous approach to health and symptom self-monitoring as they transitioned to survivorship and adulthood. CONCLUSION: Parents take on varying roles in monitoring their child's symptoms and health after finishing childhood cancer treatment. IMPLICATIONS FOR CANCER SURVIVORS: Understanding the ways in which parents continue to be involved in their child's cancer journey helps researchers develop interventions to support dyadic coping in survivorship.

Feasibility and pilot testing of a personalized eHealth intervention for pain science education and self-management for breast cancer survivors with persistent pain: a mixed-method study.

PURPOSE: Here, we describe the development and pilot study of a personalized eHealth intervention containing a pain science education program and self-management support strategies regarding pain and pain-related functioning in female survivors of breast cancer. First, we aimed to evaluate the eHealth intervention's acceptability, comprehensibility, and satisfaction; second, we aimed to assess its preliminary efficacy. METHODS: A mixed-method study design was used. Breast cancer survivors with persistent pain were recruited. After 6 weeks of engagement with the eHealth intervention, acceptability, comprehensibility, and satisfaction were measured quantitatively with a self-constructed questionnaire and described qualitatively using focus groups. A joint display was used to present the meta-interferences between data. Efficacy was assessed via mixed effects models with repeated measures (outcomes assessed at baseline, 6 weeks, and 12 weeks). RESULTS: Twenty-nine women with persistent pain after breast cancer surgery participated. Overall, the eHealth program was well received and experienced as easy to use and helpful. The eHealth intervention seems useful as an adjunct to comprehensive cancer aftercare. Efficacy estimates suggested a significant improvement in pain-related functioning, physical functioning, and quality of life. CONCLUSION: A personalized eHealth intervention appears valuable for persistent pain management after breast cancer surgery. A large controlled clinical trial to determine effectiveness, and a full process evaluation, seems warranted.

Treating persistent pain after breast cancer: practice gaps and future directions.

This paper discusses the growing problem of persisting pain after successful treatment of breast cancer and presents recommendations for improving pain-related outcomes for this group. We discuss the dominant treatment approach for persisting pain post-breast cancer treatment and draw contrasts with contemporary treatment approaches to persistent pain in non-cancer-related populations. We discuss modern application of the biopsychosocial model of pain and the notion of variable sensitivity within the pain system, moment by moment and over time. We present the implications of increasing sensitivity over time for treatment selection and implementation. By drawing on transformative changes in treatment approaches to persistent non-cancer-related pain, we describe the potentially powerful role that an intervention called pain science education, which is now recommended in clinical guidelines for musculoskeletal pain, may play in improving pain and disability outcomes after successful breast cancer treatment. Finally, we present several research recommendations that centre around adaptation of the content and delivery models of contemporary pain science education, to the post-breast cancer context.

Targeting Pain Science Education in Youth With Chronic Pain: What Are the Sticking Points for Youth and Their Parents?

OBJECTIVES: An important part of providing pain science education is to first assess baseline knowledge and beliefs about pain, thereby identifying misconceptions and establishing individually-tailored learning objectives. The Concept of Pain Inventory (COPI) was developed to support this need. This study aimed to characterize the concept of pain in care-seeking youth and their parents, to examine its clinical and demographic correlates, and to identify conceptual gaps. MATERIALS AND METHODS: Following an initial interdisciplinary evaluation, a cohort of 127 youth aged 8 to 18 years, and their parents, completed a series of questionnaires. RESULTS: Parents had slightly higher COPI scores than youth did, reflecting parents' greater alignment with contemporary pain science. The moderate positive association with older age among youth ( r =.32) suggests that COPI is sensitive to cognitive development and life experiences. Youth and parent COPI responses were weakly associated ( r =0.24), highlighting the importance of targeting the concept of pain in both groups. For both parents and youth, 'Learning about pain can help you feel less pain' was the least endorsed concept. This conceptual 'gap' is a key point of intervention that could potentially lead to greater engagement with multidisciplinary pain treatment. DISCUSSION: The COPI appears useful for identifying conceptual gaps or 'sticking points'; this may be an important step to pre-emptively address misconceptions about pain through pain science education. Future research should determine the utility of COPI in assessing and treating youth seeking care for pain. The COPI may be a useful tool for tailoring pain science education to youth and their parents.

How does pain work? A qualitative analysis of how young adults with chronic pain conceptualize the biology of pain.

BACKGROUND: Pain science education (PSE) is commonly integrated into treatments for childhood-onset chronic pain. A core component of PSE is learning about, and often reconceptualizing, the biology of chronic pain. Yet, few interventions have been developed specifically for young adults and little is known about how young adults conceptualize the biology of pain. This study used a qualitative methodology to examine how young adults with childhood-onset chronic pain understand the biology of pain, and the language they use in this meaning-making process, which may inform future interventions tailored to this age group. METHODS: We identified a cohort of young adults with childhood onset chronic pain, and a subset of 17 young adults with continuing chronic pain completed individual, semi-structured interviews. Telephone interviews were audio-recorded, transcribed verbatim and analysed using reflexive thematic analysis. RESULTS: We generated four themes that capture participants' conceptualizations of the biology of pain: (1) Something is wrong with the body, (2) An injury has not healed, (3) Nerves fire when they should not, (4) An overactive stress system. CONCLUSION: These conceptualizations, and the language used by young adults with childhood-onset chronic pain to describe them are discussed. Recommendations are provided for how PSE interventions can be tailored for young adults. SIGNIFICANCE: This study provides new qualitative insights reflecting a variety of ways that young adults with childhood-onset chronic pain conceptualize pain. Some conceptualizations of pain align with modern pain science principles (altered function of nervous and endocrine systems) while others conflict (unhealed injury). Health professionals can use these findings to tailor their pain education interventions by leveraging concepts that 'stick' for youth, being aware of, and interrogating, common misconceptions, and offering language and metaphors familiar to youth.

The Perceived Impact of COVID-19 on the Mental Health Status of Adolescent and Young Adult Survivors of Childhood Cancer and the Development of a Knowledge Translation Tool to Support Their Information Needs.

Background: Adolescent and young adult (AYA; 13 to 39 years) survivors of childhood cancer may be especially vulnerable to physical health and mental health concerns during the pandemic. We investigated the impact of COVID-19 on the mental health status of AYA survivors (Aim 1) and shared tailored, evidence-based health-related information on COVID-19 (Aim 2). Methods: Between May and June 2020, participants completed a cross-sectional online survey assessing their cancer history, current mental health status, and their COVID-19 information needs. Results: Ninety-four participants (78 females, 13 males, 2 non-binary) with a mean age of 26.9 years (SD = 6.2) were included in the final sample. Participants reported residing from 10 countries and 94% identified as White. Nearly half of the participants (49%) described their mental health status as worse now than before the pandemic. Thirty-nine participants (41%) that indicated their current mental health status was tied to fears/worries about their past cancer and treatment experienced a higher level of anxiety and PTSS than those who did not report the same. Most participants (77%) had not received any information related to the potential risks of COVID-19 and expressed an interest in receiving this information. In response, an infographic detailing recommended strategies for coping with mental health problems in the pandemic, along with preliminary study findings, was developed. Discussion: AYA survivors reporting their mental health status was linked to their past cancer experienced poorer mental health. There is a value to educating survivors on their potential health risks, but accounting for their perceived mental health vulnerabilities should be considered when disseminating knowledge. The use of an infographic is a unique contribution towards the development of innovative and personalized means of sharing health education to this vulnerable yet resilient group. This research on the mental health status of AYA survivors very early in the pandemic informs continued initiatives investigating the rapidly changing nature of how COVID-19 may impact AYA survivors today and in the future.

Pain and Fear of Cancer Recurrence in Survivors of Childhood Cancer.

OBJECTIVES: Theoretical models suggest that anxiety, pain intensity, and pain catastrophizing are implicated in a cycle that leads to heightened fear of cancer recurrence (FCR). However, these relationships have not been empirically examined. The objective of this study was to examine the relationships between anxiety symptoms, pain intensity, pain catastrophizing, and FCR in childhood cancer survivors and their parents and to examine whether pain catastrophizing predicts increased FCR beyond anxiety symptoms and pain intensity. METHODS: The participants were 54 survivors of various childhood cancers (Mage=13.1 y, range=8.4 to 17.9 y, 50% female) and their parents (94% mothers). Children reported on their pain intensity in the past 7 days. Children and parents separately completed measures of anxiety symptoms, pain catastrophizing, and FCR. RESULTS: Higher anxiety symptoms were associated with increased pain intensity, pain catastrophizing, and FCR in childhood cancer survivors. Higher anxiety symptoms and pain catastrophizing, but not child pain intensity, were associated with FCR in parents. Hierarchical linear regression models revealed that pain catastrophizing explained unique variance in both parent (ΔR2=0.11, P<0.01) and child (ΔR2=0.07, P<0.05) FCR over and above the effects of their own anxiety symptoms and child pain. DISCUSSION: The results of this study provides novel data on the association between pain and FCR and suggests that a catastrophic style of thinking about pain is more closely related to heightened FCR than one's anxiety symptoms or the sensory pain experience in both childhood cancer survivors and their parents. Pain catastrophizing may be a novel intervention target for survivors and parents struggling with fears of recurrence.

Patient-reported outcome measurement implementation in cancer survivors: a systematic review.

PURPOSE: Patient-reported outcome measurements (PROMs) are increasingly used for cancer patients receiving active treatment, but little is known about the implementation and usefulness of PROMs in cancer survivorship care. This systematic review evaluates how cancer survivors and healthcare providers (HCPs) perceive PROM implementation in survivorship care, and how PROM implementation impacts cancer survivors' health outcomes. METHODS: We systematically searched PubMed/MEDLINE, Embase, CINAHL, Web of Science, and Cochrane Database of Systematic Reviews from database inception to February 2022 to identify randomized and nonrandomized studies of PROM implementation in cancer survivors. RESULTS: Based on prespecified eligibility criteria, we included 29 studies that reported on 26 unique PROMs. The studies were heterogeneous in study design, PROM instrument, patient demographics, and outcomes. Several studies found that cancer survivors and HCPs had favorable impressions of the utility of PROMs, and a few studies demonstrated that PROM implementation led to improvements in patient quality of life (QoL), with small to moderate effect sizes. CONCLUSIONS: We found implementation of PROMs in cancer survivorship care improved health outcomes for select patient populations. Future research is needed to assess the real-world utility of PROM integration into clinical workflows and the impact of PROMs on measurable health outcomes. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors accepted PROMs. When successfully implemented, PROMs can improve health outcomes after completion of active treatment. We identify multiple avenues to strengthen PROM implementation to support cancer survivors.