Acceptability and feasibility of screening with a pediatric care provider-led social determinants of health identification tool.

BACKGROUND: Complex social determinants of health may not be easily recognized by health care providers and pose a unique challenge in the vulnerable pediatric population where patients may not be able to advocate for themselves. The goal of this study was to examine the acceptability and feasibility of health care providers using an integrated brief pediatric screening tool in primary care and hospital settings. METHODS: The framework of the Child and Adolescent Needs and Strengths (CANS) and Pediatric Intermed tools was used to inform the selection of items for the 9-item Child and Adolescent Needs and Strengths-Pediatric Complexity Indicator (CANS-PCI). The tool consisted of three domains: biological, psychological, and social. Semi-structured interviews were conducted with health care providers in pediatric medical facilities in Ottawa, Canada. A low inference and iterative thematic synthesis approach was used to analyze the qualitative interview data specific to acceptability and feasibility. RESULTS: Thirteen health care providers participated in interviews. Six overarching themes were identified: acceptability, logistics, feasibility, pros/cons, risk, and privacy. Overall, participants agreed that a routine, trained provider-led pediatric tool for the screening of social determinants of health is important (n = 10, 76.9%), acceptable (n = 11; 84.6%), and feasible (n = 7, 53.8%). INTERPRETATION: Though the importance of social determinants of health are widely recognized, there are limited systematic methods of assessing, describing, and communicating amongst health care providers about the biomedical and psychosocial complexities of pediatric patients. Based on this study's findings, implementation of a brief provider-led screening tool into pediatric care practices may contribute to this gap.

Promoting optimal mental health outcomes for children and youth.

While paediatric care providers are often the first point of contact for children or youth experiencing mental health challenges, they may lack the resources (e.g., access to a multidisciplinary team) or training to adequately identify or manage such problems. This joint statement describes the key roles and competencies required to assess and address child and youth mental health problems, and the factors that optimize outcomes in this age group. Evidence-informed guidance on screening for and discussing mental health concerns with young people and families is provided. Preventive and therapeutic interventions with demonstrated efficacy in community care settings are discussed. This foundational statement also focuses on the changes to medical education, health systems, and health policy that are needed to improve clinical practice and advocacy efforts in Canada, including appropriate remuneration models, stepped-care approaches, targeted government funding, and professional training and education.

La promotion de l'évolution optimale de la santé mentale chez les enfants et les adolescents.

Les dispensateurs de soins pédiatriques sont souvent le premier point de contact des enfants et des adolescents aux prises avec des problèmes de santé mentale, mais ils ne possèdent pas nécessairement les ressources (p. ex., l'accès à une équipe multidisciplinaire) ni la formation nécessaires pour procéder à leur dépistage ou à leur prise en charge. Le présent document de principes conjoint décrit les principaux rôles et les principales compétences à maîtriser pour évaluer et traiter les problèmes de santé mentale chez les enfants et les adolescents, de même que les facteurs qui optimisent le plus possible l'évolution de la santé mentale dans ces groupes d'âge. Il contient des conseils fondés sur des données probantes à propos du dépistage des préoccupations en matière de santé mentale chez les jeunes et leur famille ainsi qu'à propos des échanges sur le sujet. Les interventions préventives et thérapeutiques dont l'efficacité est démontrée en milieu communautaire sont abordées. Le présent document de principes, qui est fondamental, traite également des changements à l'enseignement de la médecine ainsi qu'aux systèmes et aux politiques de santé qui s'imposent pour améliorer la pratique clinique et les efforts de revendications au Canada, y compris les modèles de rémunération appropriés, les approches des soins abordées étape par étape, le financement gouvernemental ciblé, l'enseignement et la formation professionnelle.

"I'd like more options!": Interviews to explore young people and family decision-making needs for pain management in juvenile idiopathic arthritis.

BACKGROUND: Juvenile idiopathic arthritis (JIA) is a common pediatric rheumatic condition and is associated with symptoms such as joint pain that can negatively impact health-related quality of life. To effectively manage pain in JIA, young people, their families, and health care providers (HCPs) should be supported to discuss pain management options and make a shared decision. However, pain is often under-recognized, and pain management discussions are not optimal. No studies have explored decision-making needs for pain management in JIA using a shared decision making (SDM) model. We sought to explore families' decision-making needs with respect to pain management among young people with JIA, parents/caregivers, and HCPs. METHODS: We conducted semi-structured virtual or face-to-face individual interviews with young people with JIA 8-18 years of age, parents/caregivers and HCPs using a qualitative descriptive study design. We recruited participants online across Canada and the United States, from a hospital and from a quality improvement network. We used interview guides based on the Ottawa Decision Support Framework to assess decision-making needs. We audiotaped, transcribed verbatim and analyzed interviews using thematic analysis. RESULTS: A total of 12 young people (n = 6 children and n = 6 adolescents), 13 parents/caregivers and 11 HCPs participated in interviews. Pediatric HCPs were comprised of rheumatologists (n = 4), physical therapists (n = 3), rheumatology nurses (n = 2) and occupational therapists (n = 2). The following themes were identified: (1) need to assess pain in an accurate manner; (2) need to address pain in pediatric rheumatology consultations; (3) need for information on pain management options, especially nonpharmacological approaches; (4) importance of effectiveness, safety and ease of use of treatments; (5) need to discuss young people/families' values and preferences for pain management options; and the (6) need for decision support. Themes were similar for young people, parents/caregivers and HCPs, although their respective importance varied. CONCLUSIONS: Findings suggest a need for evidence-based information and communication about pain management options, which would be addressed by decision support interventions and HCP training in pain and SDM. Work is underway to develop such interventions and implement them into practice to improve pain management in JIA and in turn lead to better health outcomes.

Dyadic analysis of adolescent friendships behaviours during pain: Comparison of those with chronic pain versus those without chronic pain.

BACKGROUND: Social context has been found to influence pain intensity and tolerance. The aims of this study were to determine the impact of one type of social context on the painful experiences of adolescents with and without chronic pain by examining interactions within and across friendship dyads during experimental pain. METHODS: Each adolescent in 61 same-sex friendship dyads (30 dyads with a chronic pain member) across three sites participated in the cold pressor task and acted as the observer during their friend's participation. They also completed a battery of measures to capture friendship features and pain outcomes. Pain intensity was measured using an 11-point numeric scale. Pain tolerance was measured by the length of time in the cold pressor device. Videotapes of their interactions were coded for verbal and non-verbal behaviours. A series of Actor Partner Independence Modelling, Hierarchical Multiple Regression and Multivariate Analysis of Covariance was used to analyse the data. RESULTS: Friendship features were not associated with pain intensity or tolerance. Both members of dyads with a chronic pain member used fewer non-attending behaviours when they were observing their friend resulting in participants in those dyads having lower pain tolerance. Moreover, within dyads, one's friend's behaviours when experiencing pain influenced pain tolerance but only for those dyads with a chronic pain member. CONCLUSIONS: Strategies aimed at improving social interactions for adolescents with chronic pain while they are experiencing pain are discussed. Research is needed to understand how different peer relationships influence pain tolerance in adolescents with chronic pain. SIGNIFICANCE OF THE RESEARCH: During pain, patterns of interactions differ within and between adolescent friendship dyads when one has chronic pain (CP) versus controls. Dyads with a CP member use fewer non-attending behaviours despite non-attending behaviours rated as more helpful. Pain intensity was solely related to the participant's behaviour. Amongst dyads with a CP member, pain tolerance was also influenced by their friend's behaviours. Friends of adolescents with pain engage in more unhelpful behaviours perhaps decreasing the ability of CP adolescents to engage in social activities.

Are They Still Friends? Friendship Stability of Adolescents With Chronic Pain: 1-Year Follow-Up.

Most adolescents identify their best friend as their main source of social support. Adolescents with chronic pain (ACP) report the loss of friendships due to pain. Friendships protect against loneliness and depression, yet adolescents with pain experience increased levels of loneliness and depression compared to peers. This longitudinal study examines the friendship stability of dyads that included an adolescent with chronic pain compared to non-pain friendship dyads as well as the factors contributing to a friendship breakup. Eighty-three participants from 61 same-sex friendship dyads across 3 sites participated in a 1-year follow-up survey designed to capture friendship features, indices of social-emotional well-being, pain characteristics, and friendship stability. Chi-square, repeated measures ANOVA, and logistic regression were used to analyze the data. Dyads that included an ACP experienced higher rates of friendship breakup. The shorter length of friendship and having chronic pain predicted a friendship breakup at time 2. ACP continues to experience worse scores on indices of social-emotional well-being that are not predicted with a friendship breakup. Understanding what contributes to positive long-term friendships for those with pain may inform strategies to maintain and improve friendships for those with pain and who experience social challenges.

Development and Acceptability of a Patient Decision Aid for Pain Management in Juvenile Idiopathic Arthritis: The JIA Option Map.

BACKGROUND: Youths with juvenile idiopathic arthritis (JIA) often experience pain, which reduces their quality of life. A diversity of pain management options exists for these patients, but few discussions happen in clinical settings. Our team is developing a web-based patient decision aid (PDA) to help youths with JIA, parents, and their health care providers (HCPs) make informed and preference-based decisions about pain management options. OBJECTIVE: The objective of this study was to develop a paper-based prototype of the web-based PDA and to assess its acceptability. METHODS: We developed a paper-based prototype of the PDA, called the JIA Option Map, using an iterative process following the International Patient Decision Aid Standards and based on the Ottawa Decision Support Framework. We held three consensus meetings and a follow-up online survey followed by discussions among team members to agree on the format and content of the PDA. We then evaluated acceptability through interviews with 12 youth with JIA (aged 8-18 years), 12 parents, and 11 HCPs. Participants from rheumatology clinics in Canada and the USA reviewed the PDA and assessed its usefulness, content, and format. Interviews were audiotaped, transcribed verbatim, and analyzed using simple descriptive content analysis. RESULTS: The PDA contains an assessment of pain and current treatments, a values-clarification exercise, a list of 33 treatment options with evidence-based information, and a goal-setting exercise. All participants agreed that it would be a useful tool for making decisions about pain management. Participants appreciated the incorporation of scientific evidence and visuals to demonstrate the benefits of treatment options but suggested describing the source of the evidence more thoroughly. Participants suggested adding complementary medicine and nutrition to the available treatment options and removing options that are primarily used to reduce inflammation. Most participants preferred an interactive web-based version of the PDA that would show a few options consistent with their preferences, followed by a discussion with HCPs. CONCLUSION: The PDA was deemed acceptable to all participants, with a few modifications. This feedback was used to improve the PDA by simplifying and clarifying the information and adjusting the number of treatment options presented. Work is underway to develop an interactive web-based version with an algorithm to present options tailored to each user.

Youths with juvenile idiopathic arthritis (JIA) often feel pain and try many pain treatments such as medications and physical or psychological treatments. Choosing treatments can be hard for families, and health care providers do not always provide information on pain treatments. Our team is developing the JIA Option Map, a tool that presents information on pain treatments based on personal preferences. The tool takes patients through a five-step process where they describe their pain, express their preferences, and learn about more than 30 pain treatments. Patients can then choose treatments and make a plan to use them. This paper explains how a paper-based version of the tool was developed and whether it is suitable for youths, parents, and health care providers. The tool was developed by holding meetings with youths with JIA, health care providers, and researchers to agree on the content and format. We also interviewed youths with JIA, parents, and health care providers to test whether it was suitable. All participants felt that the tool was suitable and that it would be useful for making decisions about pain treatments. Participants liked the idea of using a web-based tool with coaching by health care providers. Work is underway to develop this improved version of the JIA Option Map.

The pediatric inflammatory bowel disease INTERMED: A new clinical tool to assess psychosocial needs.

OBJECTIVE: The adult INTERMED is used to determine case complexity and psychosocial needs. We developed and validated a pediatric version of the INTERMED for children and adolescents with inflammatory bowel disease (IBD) and assessed its utility in predicting healthcare utilization. METHODS: We performed a cross-sectional study of children (aged 8-17 y) with IBD (n = 148) and their parents, seen in a hospital-based clinic. Subjects completed semi-structured interviews that were scored on the 34 pIBD-INTERMED items. To assess inter-rater reliability, 40 interviews were videotaped and scored by a second assessor. Convergent and predictive validity were assessed by examining the relation of the pIBD-INTERMED to standardized measures of psychological, social, and family functioning, disease activity, and healthcare utilization. RESULTS: Correlational analyses supported the validity of all five pIBD-INTERMED domains with very good inter-rater reliability (median r = 0.87) and internal consistency (α = 0.91) for the total complexity index. Ratings of 2-3 on the pIBD-INTERMED "mental health/cognitive threat" item were associated with greater odds of behavior and social problems (CBCL-Internalizing scale OR = 7.27, 95% CI 2.17-24.36); CBCL-Externalizing scale OR = 24.79, 95% CI 5.00-122.84), depression (Children's Depression Inventory OR = 8.52, 95% CI 1.70-43.02) and anxiety (Multidimensional Anxiety for Children OR = 11.57, 95% CI 3.00-45.37). The pIBD-INTERMED complexity index added significantly to the prediction of healthcare utilization, beyond the contribution of disease severity. CONCLUSIONS: The pIBD-INTERMED is a reliable and valid tool for identifying psychosocial risks and needs of children with IBD. It can be used to guide planning of individualized care and enhance interdisciplinary pediatric IBD care.

Dyadic differences in friendships of adolescents with chronic pain compared with pain-free peers.

A multisite cross-sectional study was conducted to examine dyadic friendship features between adolescents with chronic pain (ACP) and their friends compared with non-pain adolescent friendship dyads and the association of these friendship features with loneliness and depressive symptoms. Participants completed a battery of standardized measures to capture friendship features (friendship quality, closeness, and perceived social support from friends) and indices of social-emotional well-being. Sixty-one same sex friendship dyads (122 adolescents) participated; 30 friendship dyads included an adolescent with chronic pain and 52 dyads were female. Adolescents with chronic pain scored significantly higher on measures of loneliness and depressive symptoms compared with all other participants. Hierarchical Multiple Regression analysis revealed that friendship features predicted loneliness and depressive symptoms. Chronic pain predicted loneliness and depressive symptoms above and beyond friendship features. Actor Partner Interdependence Modeling found perceived social support from friends had differing associations on loneliness and depressive symptoms for dyads with a chronic pain member compared with pain-free control dyads. Friendship features were associated with loneliness and depressive symptoms for adolescents, but friendship features alone did not explain loneliness and depressive symptoms for ACP. Further research is needed to understand whether pain-related social support improves loneliness and depressive symptoms for ACP. Furthermore, a more nuanced understanding of loneliness in this population is warranted. Strategies to help ACP garner needed social support from friends are needed to decrease rates of loneliness to improve long-term outcomes.

Investigation of bendamustine HCL in a phase 2 study in women with resistant ovarian cancer.

We investigated the safety and efficacy of 90 mg/m(2) bendamustine HCL, administered intravenously on days 1 and 2 every 28 days in 10 women with platinum and taxane resistant epithelial ovarian cancer. There were no objective tumor responses observed; 2 patients had stable disease. Plasma samples collected at pre-treatment and end of cycle one were analyzed for changes in circulating total cytokeratin 18 and caspase cleaved cytokeratin 18 as exploratory early biomarkers of bendamustine-induced tumor cell death. All patients had measureable levels of both total and cleaved caspase 3 cytokeratin 18, but no relationship with response was possible due to the lack of clinical benefit in treated patients. Due to the high incidence of adverse events and absence of objective responses, only ten patients were treated as predefined by the Simon Two-Stage Design in the protocol. Overall, the regimen was not well tolerated and was associated with fatigue and a greater number of gastrointestinal side effects as compared to previously reported experiences in different patient populations. However, our study subjects did experience less bone marrow suppression. The lack of tolerability could reflect the degree of tumor burden within the peritoneal cavity as well as the high number of prior regimens (median of 5) received by the patients participating in this study.

Phase I trial of intraperitoneal pemetrexed, cisplatin, and paclitaxel in optimally debulked ovarian cancer.

PURPOSE: This phase I trial evaluated intraperitoneal (i.p.) pemetrexed, cisplatin, and paclitaxel in optimally debulked ovarian cancer. EXPERIMENTAL DESIGN: Dose escalation of day 1 i.p. pemetrexed accrued three patients to each of five dose levels (60-1,000 mg/m(2)), along with day 2 i.p. cisplatin (75 mg/m(2)) and day 8 i.p. paclitaxel (60 mg/m(2)). The goals were to determine maximum tolerated dose (MTD), 18-month progression-free survival (PFS), and pharmacokinetics of i.p. pemetrexed. RESULTS: Cycles, given every 21 days, had an 80% 6-cycle completion rate. There was minimal grade III toxicity in the first 4 dose levels and remarkably an almost complete absence of peripheral neuropathy and alopecia. At the highest dose level, two of three patients experienced ≥ grade III and dose-limiting toxicity (DLT; hematologic, infection, gastrointestinal). There was a pharmacokinetic advantage for i.p. pemetrexed with an intraperitoneal:plasma area under the concentration-time curve ratio of 13-fold. Neither analysis of pharmacokinetic nor homocysteine levels explains the unexpected severity of toxicity in those two patients. On the basis of plasma C(24h) levels, the 42 cycles at ≥ 500 mg/m(2) i.p. pemetrexed without DLT, the MTD appears to be 500 mg/m(2). Median PFS is 30.1 months; 18-month PFS is 78.6% (median follow-up 22.4 months). CONCLUSIONS: This i.p.-only regimen in front-line ovarian cancer is feasible with PFS in line with recent literature. We suggest phase II trials of this regimen in this population with i.p. pemetrexed at 500 mg/m(2). The favorable toxicity profile at doses <1,000 mg/m(2), which needs to be confirmed, appears to compare well with standard combination i.v./i.p. platinum/taxane chemotherapy in this disease.

Overexpression of tumor vascular endothelial growth factor A may portend an increased likelihood of progression in a phase II trial of bevacizumab and erlotinib in resistant ovarian cancer.

PURPOSE: This phase II trial evaluated bevacizumab plus erlotinib in platinum-resistant ovarian cancer; exploratory biomarker analyses, including that of tumor vascular endothelial growth factor A (VEGF-A), were also done. EXPERIMENTAL DESIGN: Forty heavily pretreated patients received erlotinib (150 mg/d orally) and bevacizumab (10 mg/kg i.v.) every 2 weeks until disease progression. Primary end points were objective response rate and response duration; secondary end points included progression-free survival (PFS), toxicity, and correlations between angiogenic protein levels, toxicity, and efficacy. RESULTS: Grade 3 toxicities included skin rash (n = 6), diarrhea (n = 5), fatigue (n = 4), and hypertension (n = 3). Grade 4 toxicities were myocardial infarction (n = 1) and nasal septal perforation (n = 1). Only one grade 3 fistula and one grade 2 bowel perforation were observed. Nine (23.1%) of 39 evaluable patients had a response (median duration, 36.1+ weeks; one complete response), and 10 (25.6%) patients achieved stable disease, for a disease control rate of 49%. Median PFS was 4 months, and 6-month PFS was 30.8%. Biomarker analyses identified an association between tumor cell VEGF-A expression and progression (P = 0.03); for every 100-unit increase in the VEGF-A score, there was a 3.7-fold increase in the odds of progression (95% confidence interval, 1.1-16.6). CONCLUSIONS: Bevacizumab plus erlotinib in heavily pretreated ovarian cancer patients was clinically active and well tolerated. Erlotinib did not seem to contribute to efficacy. Our study raises the intriguing possibility that high levels of tumor cell VEGF-A, capable of both autocrine and paracrine interactions, are associated with resistance to bevacizumab, emphasizing the complexity of the tumor microenvironment.

Selling comfort: A survey of interventions for needle procedures in a pediatric hospital.

Abstract Needle procedures are a necessary component of the treatment of hospitalized children. However, for many children they can be both painful and distressing. There was concern among the nurses at our pediatric hospital that we were not adequately controlling pain from needle procedures. We were interested in obtaining more information about the incidence and types of needle procedures and the current use of topical analgesics. A survey was designed to describe the frequency, type, time to complete, and perceived ease of needle procedures. The use of topical anesthetics and other comfort measures was also examined. The most common needle procedures performed were venipunctures for blood work, followed by intravenous cannulations, capillary sticks, port-a-cath access, and intramuscular injections. In total, 387 procedures were performed over a 23-day period. The majority of the procedures were perceived as easy, and the modal time to complete the procedures was 5 minutes. A topical anesthetic was used for 74 procedures (i.e., 19%), and the majority of these procedures were performed on the medical day unit with oncology patients. Results of the survey provided information about the day-to-day practice of needle procedures in order to identify both the supports and the barriers to providing these procedures atraumatically. Examining needle procedures within a framework of atraumatic care broadened our perspective and enabled us to integrate the use of topical anesthetics as just one of a number of strategies to minimize the pain and distress associated with needle procedures.