Characterization of chronic pain, pain interference, and daily pain experiences in adult survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

ABSTRACT: Although survivors of childhood cancer are at an increased risk, little is known about the prevalence of chronic pain, associated interference, and daily pain experiences. Survivors (N = 233; mean age = 40.8 years, range 22-64 years; mean time since diagnosis = 32.7 years) from the Childhood Cancer Survivor Study completed pain and psychosocial measures. Survivors with chronic pain completed 2-week, daily measures assessing pain and psychological symptoms using mHealth-based ecological momentary assessment. Multivariable-modified Poisson and linear regression models estimated prevalence ratio estimates (PR) and mean effects with 95% confidence intervals (CI) for associations of key risk factors with chronic pain and pain interference, respectively. Multilevel mixed models examined outcomes of daily pain and pain interference with prior day symptoms. Ninety-six survivors (41%) reported chronic pain, of whom 23 (24%) had severe interference. Chronic pain was associated with previous intravenous methotrexate treatment (PR = 1.6, 95% CI 1.1-2.3), respiratory (PR = 1.8, 95% CI 1.2-2.5), gastrointestinal (PR = 1.6, 95% CI 11.0-2.3), and neurological (PR = 1.5, 95% CI 1.0-2.1) chronic health conditions, unemployment (PR = 1.4, 95% CI 1.0-1.9) and clinically significant depression and anxiety (PR = 2.9, 95% CI 2.0-4.2), as well as a diagnosis of childhood Ewing sarcoma or osteosarcoma (PR = 1.9, 95% CI 1.0-3.5). Higher pain interference was associated with cardiovascular and neurological conditions, unemployment and clinical levels of depression and/or anxiety, and fear of cancer recurrence. For male, but not female survivors, low sleep quality, elevated anxiety, and elevated depression predicted high pain intensity and interference the next day. A substantial proportion of childhood cancer survivors experience chronic pain and significant associated interference. Chronic pain should be routinely evaluated, and interventions are needed.

Nurse-led remote digital support for adults with chronic conditions: A systematic synthesis without meta-analysis.

AIM: The systematic review aims to synthesize the literature examining the effectiveness of nurse-led remote digital support on health outcomes in adults with chronic conditions. BACKGROUND: Adults with chronic diseases have increased rates of mortality and morbidity and use health care resources at a higher intensity than those without chronic conditions-placing strain on the patient, their caregivers and health systems. Nurse-led digital health disease self-management interventions have potential to improve outcomes for patients with chronic conditions by facilitating care in environments other that the hospital setting. DESIGN AND METHODS: We searched PubMed/MEDLINE, Embase, PsycINFO and Cochrane Central databases from inception to 7 December 2022. We included randomized controlled trials assessing the impact of nurse-led remote digital support interventions compared to usual care on health-related outcomes in adults with chronic illness. The Cochrane risk-of-bias tool was used to assess bias in studies. Outcomes were organized into four categories: self-management, clinical outcomes, health care resource use and satisfaction with care. Results are presented narratively based on statistical significance. RESULTS: Forty-four papers pertaining to 40 unique studies were included. Interventions most targeted diabetes (n = 11) and cardiovascular disease (n = 8). Websites (n = 10) and mobile applications (n = 10) were the most used digital modalities. Nurses supported patients either in response to incoming patient health data (n = 14), virtual appointment (n = 8), virtual health education (n = 5) or through a combination of these approaches (n = 13). Positive impacts of nurse-led digital chronic disease support were identified in each outcome category. Mobile applications were the most effective digital modality. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: Results show that nurse-led remote digital support interventions significantly improve self-management capacity, clinical health outcomes, health care resource use and satisfaction with care. Such interventions have potential to support overall health for adults with chronic conditions in their home environments.

Establishing the Top 10 Research Priorities for Adolescent and Young Adult (AYA) Cancer in Canada: A Protocol for a James Lind Alliance Priority Setting Partnership.

Adolescents and young adults (AYAs; 15-39 years) diagnosed with cancer have unique medical and psychosocial needs. These needs could be better addressed through research that is focused on the topics that matter most to them. However, there is currently no patient-oriented research agenda for AYA cancer in Canada. This manuscript describes the early development and project protocol for a priority-setting partnership (PSP) for establishing the top 10 research priorities for AYA cancer in Canada. This project follows the PSP methodology outlined by the James Lind Alliance (JLA) to engage patients, caregivers, and clinicians in research prioritization. The steps of a JLA PSP include establishing a steering group and project partners, gathering uncertainties, data processing and verifying uncertainties, interim priority setting, and a final priority setting workshop. The AYA cancer PSP will result in a top 10 list of research priorities identified by Canadian AYA patients, caregivers, and clinicians that will be published and shared broadly with the research community. The first steering group meeting was held in April 2023, and the project is ongoing. The establishment of a patient-oriented research agenda for AYA cancer will catalyze a long-term and impactful research focus and ultimately improve outcomes for AYA patients with cancer in Canada.

Triage Decision-Making in Interdisciplinary Pediatric Chronic Pain Programs.

BACKGROUND: Interdisciplinary pediatric chronic pain programs are ideal treatment settings for youth with chronic pain who are complex from a biopsychosocial perspective. There is currently no evidence-based clinical decision support to guide nurses triaging patients to such programs, which increases the risk for haphazard triage decisions. AIMS: To explore and describe the decision-making practices of and contextual influences on nurses triaging patients to interdisciplinary pediatric chronic pain programs. DESIGN: A qualitative exploratory descriptive design. SETTINGS: Interdisciplinary Pediatric Chronic Pain Programs. PARTICIPANTS/SUBJECTS: In all, 12 nurses across 11 different interdisciplinary pediatric chronic pain programs participated in this study. METHODS: Individual, semi-structured interviews were conducted, transcribed verbatim, and analyzed using concurrent content analysis, guided by the Cognitive Continuum Theory and the Theoretical Domains Framework. RESULTS: Findings focused on the complexity of the pediatric chronic pain population and the leading role nurses play in triage without evidence-based guidance. Analysis generated three prominent themes: (1) nurse-led triage determinants; (2) process of triage decision-making; and (3) external influences on triage decision-making. CONCLUSIONS: Triage decision making in the setting of interdisciplinary pediatric chronic pain programs is complex and often led by nurses. There is a desire amongst nurses to adopt an evidence-based clinical decision support triage tool (CDS), which may streamline the referral and triage process and foster a system whereby patients in highest need for interdisciplinary care are best prioritized.

Assessment of complementary health approaches use in pediatric oncology: Modification and preliminary validation of the "Which Health Approaches and Treatments Are You Using?" (WHAT) questionnaires.

OBJECTIVE: Complementary Health Approaches (CHA) are commonly used by children with cancer; however, a few health care providers (HCPs) inquire about the use of CHA. A standardized questionnaire could facilitate such clinical discussions. We aimed to adapt and determine the face and content validity of the "Which Health Approaches and Treatments are you using?" (WHAT) child and parent-report questionnaires in pediatric oncology. METHODS: An electronic Delphi survey that included children with cancer (8-18 years), parents, and HCPs and CHA researchers was conducted to reach consensus on the content of the WHAT questionnaires in pediatric oncology. Children and parents from the Hospital for Sick Children (SickKids), and HCPs and researchers from the International Society of Pediatric Oncology and Pediatric Complementary and Alternative Medicine Research and Education Network completed the survey. To determine the face and content validity of the questionnaires, two iterative cycles of individual interviews were conducted with purposive samples of children (8-18 years), parents, and HCPs from SickKids. RESULTS: Consensus was reached on all domains and items of the original WHAT questionnaires after one Delphi cycle (n = 61). For face and content validity testing, the first cycle of interviews (n = 19) revealed that the questionnaires were mostly comprehensive and relevant. However, the paper-based format of the original WHAT was not user-friendly, and generic items were vague and not aimed at facilitating clinical dialogues about CHA use. The WHAT questionnaires were then modified into electronic cancer-specific self- and proxy-report questionnaires including 13 and 15 items, respectively. The second cycle (n = 21) showed no need for further changes. CONCLUSIONS: The modified electronic cancer-specific WHAT questionnaires showed adequate face and content validity. The next step is to determine inter-rater reliability, construct validity, and feasibility of administration of the modified WHAT questionnaires in pediatric oncology.

Exploring the use of social media and online methods to engage persons with lived experience and healthcare professionals in creating research agendas: Lessons from a pediatric cancer research priority-setting partnership.

Social media is increasingly used to engage persons with lived experience and healthcare professionals in research, however, there remains sparse guidance on how to effectively use social media to engage these groups in research agenda-setting. Here we report our process and experience utilizing a social media campaign to engage Canadians within the pediatric cancer community in a research priority-setting exercise. Following the James Lind Alliance method, we launched a priority-setting partnership (PSP) to develop a child with cancer-, survivor-, family member-, and healthcare professional-based Canadian pediatric cancer research agenda. Social media-based strategies were implemented to recruit participants for two PSP surveys, including preparatory activities, developing a website, launching graphics and advertisements, and engaging internal and external networks. Descriptive statistics of our data and analytics provided by the platforms are used presently to report our process. The framework we implemented involved preparing for social media use, identifying a target audience, developing campaign content, conducting the campaign, refining the campaign as needed, and evaluating its success. Our process resulted in a substantial social media-based reach, good survey completion rates, and a successfully developed pediatric cancer community-specified research agenda. Social media may represent a useful approach to engage persons with lived experience and healthcare professionals in research agenda development. Based on our experience, we present strategies to increase social media campaign engagement that may be useful to those seeking to conduct health research priority-setting exercises.

Parent and clinician perceptions and recommendations on a pediatric cancer pain management app: A qualitative co-design study.

Pain is one of the most prevalent and burdensome pediatric cancer symptoms for young children and their families. A significant proportion of pain episodes are experienced in environments where management options are limited, including at home. Digital innovations such as apps may have positive impacts on pain outcomes for young children in these environments. Our overall aim is to co-design such an app and the objective of this study was to explore the perceptions of children's parents about app utility, needed system features, and challenges. We recruited parents of young children with cancer and multidisciplinary pediatric oncology clinicians from two pediatric cancer care centers to participate in audio-recorded, semi-structured, co-design interviews. We conducted interviews structured around technology acceptance and family caregiving theories until data saturation was reached. Audio-recordings were then transcribed, coded, and analyzed using thematic analysis. Forty-two participants took part in the process. Participants endorsed the concept of an app as a useful, safe, and convenient way to engage caregivers in managing their young child's pain. Overall, the app was valued as a means to provide real-time, multimodal informational and procedural pain support to parents, while also reducing the emotional burden of pain care. Recommendations for intervention design included accessibility-focused features, comprehensive symptom tracking, and embedded scientific- and clinically-sound symptom assessments and management advice. Predicted challenges to app use included the workload burden it may place on parents and clinicians. The insights gathered will inform the design principles of our future childhood cancer pain digital research.

A systematic review of the biopsychosocial dimensions affected by chronic pain in children and adolescents: identifying reliable and valid pediatric multidimensional chronic pain assessment tools.

Pediatric chronic pain is a complex experience that is often challenging to describe and measure. Multidimensional tools that evaluate the biopsychosocial impact of chronic pain in pediatric patients can help clinicians to prioritize and tailor interdisciplinary pain care; yet, the psychometric value and clinical utility of such tools has not yet been systematically studied in the literature. The purpose of this review was to identify multidimensional biopsychosocial tools used in pediatric chronic pain, synthesize their reliability and validity evidence, and draw on this evidence to describe the relationships between chronic pain and biopsychosocial domains. The search involved 2 phases to (1) identify eligible tools and (2) conduct a measured forward citation search of tool development articles. Tool eligibility was guided by the Multidimensional Biobehavioral Model of Pediatric Pain and study eligibility was focused on primary chronic pain diagnoses unrelated to disease. Data extraction was focused on reliability and validity evidence of eligible tools, guided by the Standards for Educational and Psychological Testing. Results yielded 6 tools that included 64 eligible studies, highlighting 84 significant relationships between pain and functional interference across 11 biopsychosocial variables. All tools were shown to have good internal consistency and evidence of validity, primarily through relationships to other variables. Of the 6 tools, the most brief and easy to use were the most under studied. Further psychometric research is warranted for these tools to investigate their clinical utility and psychometric properties in guiding and prioritizing pain care for children and adolescents.

Inter-Rater Reliability, Construct Validity, and Feasibility of the Modified "Which Health Approaches and Treatments Are You Using?" (WHAT) Questionnaires for Assessing the Use of Complementary Health Approaches in Pediatric Oncology.

BACKGROUND: This study aimed to test the inter-rater reliability, construct validity, and feasibility of the modified "Which Health Approaches and Treatments Are You Using?" (WHAT) questionnaires in pediatric oncology; Methods: Parent-child dyads were invited to complete self- and proxy-report-modified WHAT, Pediatric Quality of Life Inventory, demographics, a diary of the child's recent use of CHA, and a questionnaire assessing the aspects of feasibility. Parents were asked to complete a satisfaction of their children's use of the CHA survey; Results: Twenty-four dyads completed the study. The mean weighted kappa showed strong inter-rater reliability (k = 0.77, SE = 0.056), and strong agreements between the modified WHAT and the diary (self-report [k = 0.806, SE = 0.046] and proxy-report [k = 0.894, SE = 0.057]). Significant relationships were found only between recent and non-recent CHA users in relation to the easy access to CHA (self-report [p = 0.02], proxy-report [p < 0.001]). The mean scores of the feasibility scale (out of 7.0) for the self- and proxy-report were 5.64 (SD = 0.23) and 5.81 (SD = 0.22), respectively, indicating the feasibility of the modified WHAT; Conclusions: The findings provide initial evidence of the reliability and validity of the modified WHAT and their feasibility. Further research is needed to test the theoretical relationships and further explore the validity and reliability of the modified WHAT.

A New Age of Health Promotion: The Use of Digital Infographics in Nursing Education.

ABSTRACT: The COVID-19 pandemic has shifted how nursing education and information are delivered, with many classes being moved to an online platform. This opened opportunities to find creative ways to engage students. As a result, an entirely online infographic assignment for final-year baccalaureate nursing students was created. The focus of this assignment was to engage students to identify important health issues, consider multilevel solutions, and communicate information to relevant stakeholders using visual storytelling for maximum impact.

Attaining expert consensus on diagnostic expectations of primary chronic pain diagnoses for patients referred to interdisciplinary pediatric chronic pain programs: A delphi study with pediatric chronic pain physicians and advanced practice nurses.

Objective: Pediatric primary chronic pain disorders come with diagnostic uncertainty, which may obscure diagnostic expectations for referring providers and the decision to accept or re-direct patients into interdisciplinary pediatric chronic pain programs based on diagnostic completeness. We aimed to attain expert consensus on diagnostic expectations for patients who are referred to interdisciplinary pediatric chronic pain programs with six common primary chronic pain diagnoses. Method: We conducted a modified Delphi study with pediatric chronic pain physicians, nurse practitioners and clinical nurse specialists to determine degree of importance on significant clinical indicators and diagnostic items relevant to each of the six primary chronic pain diagnoses. Items were identified through point of care databases and complimentary literature and were rated by participants on a 5-point Likert scale. Our consensus threshold was set at 70%. Results: Amongst 22 experts across 14 interdisciplinary programs in round one and 16 experts across 12 interdisciplinary programs in round two, consensus was reached on 84% of diagnostic items, where the highest degree of agreement was with Complex Regional Pain Syndrome (CRPS), Type 1 (100%) and the lowest with chronic pelvic pain (67%). Conclusion: This study demonstrated a general agreement amongst pediatric chronic pain experts regarding diagnostic expectations of patients referred to interdisciplinary chronic pain programs with primary chronic pain diagnoses. Study findings may help to clarify referral expectations and the decision to accept or re-direct patients into such programs based on diagnostic completeness while reducing the occurrence of unnecessary diagnostic tests and subsequent delays in accessing specialized care.

Traumatic stress symptoms in family caregivers of patients with acute leukaemia: protocol for a multisite mixed methods, longitudinal, observational study.

INTRODUCTION: The diagnosis, progression or recurrence of cancer is often highly traumatic for family caregivers (FCs), but systematic assessments of distress and approaches for its prevention and treatment are lacking. Acute leukaemia (AL) is a life-threatening cancer of the blood, which most often presents acutely, requires intensive treatment and is associated with severe physical symptoms. Consequently, traumatic stress may be common in the FCs of patients with AL. We aim to determine the prevalence, severity, longitudinal course and predictors of traumatic stress symptoms in FCs of patients with AL in the first year after diagnosis, and to understand their lived experience of traumatic stress and perceived support needs. METHODS AND ANALYSIS: This two-site longitudinal, observational, mixed methods study will recruit 223 adult FCs of paediatric or adult patients newly diagnosed with AL from two tertiary care centres. Quantitative data will be collected from self-report questionnaires at enrolment, and 1, 3, 6, 9 and 12 months after admission to hospital for initial treatment. Quantitative data will be analysed using descriptive and machine learning approaches and a multilevel modelling (MLM) approach will be used to confirm machine learning findings. Semi-structured qualitative interviews will be conducted at 3, 6 and 12 months and analysed using a grounded theory approach. ETHICS AND DISSEMINATION: This study is funded by the Canadian Institutes of Health Research (CIHR number PJT 173255) and has received ethical approval from the Ontario Cancer Research Ethics Board (CTO Project ID: 2104). The data generated have the potential to inform the development of targeted psychosocial interventions for traumatic stress, which is a public health priority for high-risk populations such as FCs of patients with haematological malignancies. An integrated and end-of-study knowledge translation strategy that involves FCs and other stakeholders will be used to interpret and disseminate study results.

The Symptom Experience in Pediatric Cancer: Current Conceptualizations and Future Directions.

PURPOSE OF REVIEW: We aimed to review the recent research on the childhood cancer symptom experience pertaining to socioeconomic factors, biology and genetics, growth and development, family psychosocial dynamics, and social and treating environments to begin to formulate recommendations for a personalized approach to symptom management. RECENT FINDINGS: Cancer symptoms are common and distressing in children and negatively impact child and family quality of life. Many interacting factors influence children's cancer symptoms experiences, including the assessment and management of such symptoms. This paper highlights several gaps in the research related to the cancer symptom experience including routine symptom assessment, the impact of socioeconomic, biological, and genetic factors on symptoms, and the establishment of effective symptom management partnerships with families. Based on our findings, we provide recommendations related to that research which is ready to be implemented into clinical practice and areas for needed future efforts.

Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review.

BACKGROUND: The need to include individuals with lived experience (ie, patients, family members, caregivers, researchers, and clinicians) in health research priority setting is becoming increasingly recognized. Social media-based methods represent a means to elicit and prioritize the research interests of such individuals, but there remains sparse methodological guidance on how best to conduct these social media efforts and assess their effectiveness. OBJECTIVE: This review aims to identify social media strategies that enhance participation in priority-setting research, collate metrics assessing the effectiveness of social media campaigns, and summarize the benefits and limitations of social media-based research approaches, as well as recommendations for prospective campaigns. METHODS: We searched PubMed, Embase, Cochrane Library, Scopus, and Web of Science from database inception until September 2021. Two reviewers independently screened all titles and abstracts, as well as full texts for studies that implemented and evaluated social media strategies aimed at engaging knowledge users in research priority setting. We subsequently conducted a thematic analysis to aggregate study data by related codes and themes. RESULTS: A total of 23 papers reporting on 22 unique studies were included. These studies used Facebook, Twitter, Reddit, websites, video-calling platforms, emails, blogs, e-newsletters, and web-based forums to engage with health research stakeholders. Priority-setting engagement strategies included paid platform-based advertisements, email-embedded survey links, and question-and-answer forums. Dissemination techniques for priority-setting surveys included snowball sampling and the circulation of participation opportunities via internal members' and external organizations' social media platforms. Social media campaign effectiveness was directly assessed as number of clicks and impressions on posts, frequency of viewed posts, volume of comments and replies, number of times individuals searched for a campaign page, and number of times a hashtag was used. Campaign effectiveness was indirectly assessed as numbers of priority-setting survey responses and visits to external survey administration sites. Recommendations to enhance engagement included the use of social media group moderators, opportunities for peer-to-peer interaction, and the establishment of a consistent tone and brand. CONCLUSIONS: Social media may increase the speed and reach of priority-setting participation opportunities leading to the development of research agendas informed by patients, family caregivers, clinicians, and researchers. Perceived limitations of the approach include underrepresentation of certain demographic groups and addressing such limitations will enhance the inclusion of diverse research priority opinions in future research agendas.

Data handling practices and commercial features of apps related to children: a scoping review of content analyses.

BACKGROUND: Child interaction (including via parent proxy) with mobile apps is common, generating concern about children's privacy and vulnerability to advertising and other commercial interests. Researchers have conducted numerous app content evaluations, but there is less attention to data sharing or commercial practices. OBJECTIVE: This scoping review of commercial app evaluation studies describes the nature of such evaluations, including assessments of data privacy, data security and app-based advertising. METHODS: We searched Scopus, PubMed, Embase and ACM Digital Library (2005-2020). We included studies that evaluated the properties of apps available through commercial app stores and targeted children, parents of a child (0-18 years) or expectant parents. Data extracted and synthesised were study and app user characteristics, and app privacy, data sharing, security, advertisement and in-app purchase elements. RESULTS: We included 34 studies; less than half (n=15; 44.1%) evaluated data privacy and security elements and half (n=17; 50.0%) assessed app commercial features. Common issues included frequent data sharing or lax security measures, including permission requests and third-party data transmissions. In-app purchase options and advertisements were common and involved manipulative delivery methods and content that is potentially harmful to child health. CONCLUSIONS: Research related to the data handling and the commercial features of apps that may transmit children's data is preliminary and has not kept pace with the rapid expansion and evolution of mobile app development. Critical examinations of these app aspects are needed to elucidate risks and inform regulations aimed at protecting children's privacy and well-being.

Perceptions of healthcare professionals regarding home-based pediatric cancer care provided in French: A qualitative descriptive study.

Goal: This study aims to explore how healthcare professionals perceive home-based pediatric cancer care provided in French. Methodology: A qualitative descriptive study was conducted using semi-directed individual interviews of 22 healthcare professionals. A thematic analysis of the transcribed interviews was carried out independently by two members of the research team. Findings: Pediatric cancer care is readily available in French in Quebec, but access to French-language services in Ontario is limited. The possible causes and effects of this lack of access and potential solutions are discussed in this paper. Conclusion: The perceptions compiled in this study should be taken into account to help provide quality home-based pediatric cancer care in French.

Home-Based Pediatric Cancer Care: Perspectives and Improvement Suggestions From Children, Family Caregivers, and Clinicians.

PURPOSE: Although the hospital remains the dominant site for delivering most pediatric cancer care, home-based care is increasingly provided. To effectively deliver comprehensive, relevant, and acceptable care in children's homes, the voices of these key informants must be considered. We examined the views of children with cancer, their family caregivers, and clinicians on home-based cancer care to identify necessary strategies to improve the delivery of care. METHODS: Children with cancer, their family caregivers, and multiprofessional clinicians who provide care at a tertiary pediatric care center or in the community participated in audio-recorded, semistructured interviews in French and English. Interviews were conducted until data saturation in each participant group was achieved. Interviews were transcribed, coded, and analyzed using thematic analysis. RESULTS: Thirteen children, 20 family caregivers, and 22 clinicians participated. Home-based care was endorsed as a means to improve child health-, family social- and financial-, and system-level outcomes. The success of a home-based model is built on care that addresses child and family informational, treatment and care, material, and psychosocial needs. Mechanisms to improve care include enhanced homecare agency-hospital-family communication, training for homecare nurses in pediatric cancer care, virtual solutions, and an expanded breadth of services provided in-home. Child-, family-, and system-related factors affect the delivery of optimal home-based care. CONCLUSION: Children, families, and clinicians value a model of pediatric cancer care that incorporates home-based services. The insights of these key informants should be reflected in the principles that become the basis of home-based cancer care best practices.