Characterization of physical literacy in children with chronic medical conditions compared with healthy controls: a cross-sectional study.

To determine the physical literacy, defined as the capability for a physically active lifestyle, of children with medical conditions compared with healthy peers, this multicenter cross-sectional study recruited children with medical conditions from cardiology, neurology (including concussion), rheumatology, mental health, respirology, oncology, hematology, and rehabilitation (including cerebral palsy) clinics. Participants aged 8-12 years (N = 130; mean age: 10.0 ± 1.44 years; 44% female) were randomly matched to 3 healthy peers from a normative database, based on age, gender, and month of testing. Total physical literacy was assessed by the Canadian Assessment of Physical Literacy, a validated assessment of physical literacy measuring physical competence, daily behaviour, knowledge/understanding, and motivation/confidence. Total physical literacy mean scores (/100) did not differ (t(498) = -0.67; p = 0.44) between participants (61.0 ± 14.2) and matched healthy peers (62.0 ± 10.7). Children with medical conditions had lower mean physical competence scores (/30; -6.5 [-7.44 to -5.51]; p < 0.001) but higher mean motivation/confidence scores (/30; 2.6 [1.67 to 3.63]; p < 0.001). Mean daily behaviour and knowledge/understanding scores did not differ from matches (/30; 1.8 [0.26 to 3.33]; p = 0.02;/10; -0.04 [-0.38 to 0.30]; p = 0.81; respectively). Children with medical conditions are motivated to be physically active but demonstrate impaired movement skills and fitness, suggesting the need for targeted interventions to improve their physical competence. Novelty: Physical literacy in children with diverse chronic medical conditions is similar to healthy peers. Children with medical conditions have lower physical competence than healthy peers, but higher motivation and confidence. Physical competence (motor skill, fitness) interventions, rather than motivation or education, are needed for these youth.

Adolescent Patients' Management of Postoperative Pain after Discharge: A Qualitative Study.

BACKGROUND: Adolescents are typically admitted for a short period of time after inpatient surgery, leaving much of their recovery to occur at home. Pain, and thus pain management, is a major component of recovery at home. Research among pediatric outpatient surgical patients has found that pain experienced in the community setting after discharge is often severe and is related to knowledge deficits resulting in inadequate pain management. However, there is little research on community pain management after inpatient surgery. AIM: This study aimed to explore the pain experiences of seven adolescents who underwent inpatient surgery. DESIGN: This study used Interpretative Phenomenological Analysis as a methodology. SETTING: This study took place at a pediatric tertiary care hospital in Canada. PARTICIPANTS: 7 adolescents participated, all of whom underwent inpatient surgery with admission between 2-14 days in length. METHODS: Semi-structured interviews were conducted 2 to 6 weeks post-discharge. RESULTS: Three themes were identified that described their experiences, including managing severe pain at home with minimal preparation, changes in the parent-child relationship, and difficulties returning to school and regular activities. CONCLUSIONS: Involving adolescents directly in discharge education, particularly with the use of novel interventions and coaching, may improve outcomes. KEY PRACTICE POINTS: Adolescent patients experience significant pain after discharge from hospital after inpatient surgical procedures. Adolescents are in need of adolescent-specific pain management education to increase skill and knowledge and address pain management-related misconceptions. Greater emphasis on involving adolescents in their own pain care and novel intervention could prove useful in improving outcomes.

Parents' management of adolescent patients' postoperative pain after discharge: A qualitative study.

Background: Short hospital admission periods following pediatric inpatient surgery leave parents responsible for managing their child's postoperative pain in the community following discharge. Little is known about the experiences of parents caring for their child's postoperative pain after discharge home following inpatient surgery. Research examining parental postoperative pain management following their child's day surgery has found that parents are challenged in their pain management knowledge and practices. Aims: This interpretative phenomenological analysis study sought to understand parents' experiences caring for their child's postoperative pain at home. Methods: Semistructured telephone interviews were conducted with seven parents between 2 weeks and 6 months after their child's discharge from hospital. Results: Identified themes were coming home without support, managing significant pain at home, and changes in the parent-child relationship. Conclusions: Parents could potentially benefit from nurses optimizing educational interventions, from receiving ongoing support of transitional pain teams, and from assistance with return to school planning.

Contexte: Les courtes périodes d'hospitalisation après une chirurgie pédiatrique en milieu hospitalier laissent les parents responsables de la prise en charge de la douleur postopératoire de leur enfant dans la communauté après son congé. On sait peu de choses sur les expériences des parents qui s'occupent de la douleur postopératoire de leur enfant après leur retour à la maison suite à une chirurgie en milieu hospitalier. La recherche portant sur la prise en charge de la douleur postopératoire par les parents suite à la chirurgie d'un jour de leur enfant a révélé que les parents font face à des difficultés en ce qui concerne leurs connaissances et leurs pratiques en matière de prise en charge de la douleur.Objectifs: Cette étude d'analyse phénoménologique interprétative visait à comprendre l'expérience des parents qui s'occupent de la douleur postopératoire de leur enfant à la maison.Méthode: Des entretiens téléphoniques semi-structurés ont été menés avec sept parents entre deux semaines et six mois après la sortie de l'hôpital de leur enfant.Résultats: Les thèmes recensés ont été le retour à la maison sans soutien, la prise en charge d'une douleur importante à la maison et les changements dans la relation parent-enfant.Conclusions: Les parents pourraient potentiellement bénéficier de l'optimisation des interventions éducatives par des infirmières, d'un soutien continu de la part des équipes de la douleur transitoire et d'une aide à la planification du retour à l'école.

Crowdsourcing the Citation Screening Process for Systematic Reviews: Validation Study.

BACKGROUND: Systematic reviews (SRs) are often cited as the highest level of evidence available as they involve the identification and synthesis of published studies on a topic. Unfortunately, it is increasingly challenging for small teams to complete SR procedures in a reasonable time period, given the exponential rise in the volume of primary literature. Crowdsourcing has been postulated as a potential solution. OBJECTIVE: The feasibility objective of this study was to determine whether a crowd would be willing to perform and complete abstract and full text screening. The validation objective was to assess the quality of the crowd's work, including retention of eligible citations (sensitivity) and work performed for the investigative team, defined as the percentage of citations excluded by the crowd. METHODS: We performed a prospective study evaluating crowdsourcing essential components of an SR, including abstract screening, document retrieval, and full text assessment. Using CrowdScreenSR citation screening software, 2323 articles from 6 SRs were available to an online crowd. Citations excluded by less than or equal to 75% of the crowd were moved forward for full text assessment. For the validation component, performance of the crowd was compared with citation review through the accepted, gold standard, trained expert approach. RESULTS: Of 312 potential crowd members, 117 (37.5%) commenced abstract screening and 71 (22.8%) completed the minimum requirement of 50 citation assessments. The majority of participants were undergraduate or medical students (192/312, 61.5%). The crowd screened 16,988 abstracts (median: 8 per citation; interquartile range [IQR] 7-8), and all citations achieved the minimum of 4 assessments after a median of 42 days (IQR 26-67). Crowd members retrieved 83.5% (774/927) of the articles that progressed to the full text phase. A total of 7604 full text assessments were completed (median: 7 per citation; IQR 3-11). Citations from all but 1 review achieved the minimum of 4 assessments after a median of 36 days (IQR 24-70), with 1 review remaining incomplete after 3 months. When complete crowd member agreement at both levels was required for exclusion, sensitivity was 100% (95% CI 97.9-100) and work performed was calculated at 68.3% (95% CI 66.4-70.1). Using the predefined alternative 75% exclusion threshold, sensitivity remained 100% and work performed increased to 72.9% (95% CI 71.0-74.6; P<.001). Finally, when a simple majority threshold was considered, sensitivity decreased marginally to 98.9% (95% CI 96.0-99.7; P=.25) and work performed increased substantially to 80.4% (95% CI 78.7-82.0; P<.001). CONCLUSIONS: Crowdsourcing of citation screening for SRs is feasible and has reasonable sensitivity and specificity. By expediting the screening process, crowdsourcing could permit the investigative team to focus on more complex SR tasks. Future directions should focus on developing a user-friendly online platform that allows research teams to crowdsource their reviews.

Symptoms, coping, and quality of life in pediatric brain tumor survivors: a qualitative study.

PURPOSE/OBJECTIVES: To explore the symptom experience, coping strategies, and children's descriptions of their quality of life (QOL) after treatment for a brain tumor. RESEARCH APPROACH: An interpretive descriptive qualitative study. SETTING: A pediatric hospital setting in Ontario, Canada. PARTICIPANTS: 12 children aged 9-18 years. METHODS: Content analysis of semistructured interviews was guided by interpretive description methodology. FINDINGS: Children described symptoms including feeling tired, pain, headaches, emotional problems, difficulty thinking and remembering, problems with sleep, physical problems, and weight changes. Symptoms interfered with physical activity, keeping up with school, maintaining appearances, and communication. Coping strategies included reconditioning, taking breaks, taking medication, challenging themselves, volunteering, maintaining friendships, laughing, and using aids. CONCLUSIONS: Survivors experienced multiple symptoms that had an effect on their life, but overall, they described good QOL. INTERPRETATION: Caregivers need to understand the complexity of their patient's symptom experience and its impact on his or her daily life. Coping strategies can be identified to help mitigate potentially negative QOL outcomes.

Symptom experience and quality of life in pediatric brain tumor survivors: a cross-sectional study.

CONTEXT: Little is known about the symptom experience and quality of life of children and youths who have completed treatment for a pediatric brain tumor. OBJECTIVES: This study describes the symptom experience and health-related quality of life of children who have survived a brain tumor. METHODS: This observational cross-sectional study used a convenience sample of 50 children who were being followed in ambulatory care after they had completed brain tumor treatment. Their symptom experience was measured using the Memorial Symptom Assessment Scale, and health-related quality of life was measured using the Pediatric Quality of Life Inventory. RESULTS: The median number of symptoms reported by the participants was six. The most prevalent symptoms were lack of energy (52%), feeling drowsy (40%), difficulty with sleep (38%), lack of concentration (36%), and headaches (36%). Among those reporting symptoms, the most distressing symptoms were pain (14%), headaches (12%), lack of energy (8%), and difficulty with sleep (8%). Four symptoms-lack of energy, concentration, pain, and shortness of breath-explained most of the variance in the Pediatric Quality of Life Inventory subscales and total scores. CONCLUSION: Pediatric brain tumor survivors experience many symptoms after treatment. Care providers should be particularly diligent screening for symptoms, including pain, headaches, lack of energy, and sleep problems, as these symptoms may be particularly distressing for children.

Quality of life and symptoms in pediatric brain tumor survivors: a systematic review.

Little is known about the quality of life of children and youth under the age of 20 who have completed treatment for a pediatric brain tumor. This systematic review was conducted to (a) describe the health-related quality of life (HRQL) outcomes in pediatric brain tumor survivors, (b) identify instruments used to measure HRQL, and (c) determine the relationship between symptoms and HRQL. Using a systematic search and review methodology, databases searched included CINAHL, Medline, Embase, and PsycInfo. No date restrictions were used. Search results elicited 485 articles, of which16 met the inclusion criteria. Compared with their healthy peers, pediatric brain tumor survivors did worse on most measures of physical, psychosocial, social, and cognitive domains of HRQL. Compared with other cancer patients, survivors scored themselves significantly lower on the Pediatric Quality of Life Inventory (PedsQL) social functioning scale, and parents of brain tumor survivors reported lower PedsQL social and total functioning scores for their children. Other variables that were associated with decreased HRQL were degree of hypothalamic tumor involvement, osteopenia, need for special education, older age at diagnosis, greater than 1 year since treatment, and radiation treatment. In these studies, pediatric brain tumor survivors fared worse compared with other cancer survivors or healthy peers on several HRQL domains. Only 3 studies explored the relationship between symptoms, including pain or fatigue, and HRQL in pediatric brain tumor survivors. The relationship between symptoms and HRQL was not well elucidated. More research is needed to explore the multidimensional symptom experience and HRQL outcomes in pediatric brain tumor survivors.

Initial development of the Symptom Screening in Pediatrics Tool (SSPedi).

BACKGROUND: We previously identified published scales for symptom assessment in pediatric cancer patients. The objectives of this study were to identify if any of these scales were suitable for use or adaptation as a self-report symptom screening tool, and if not, to begin the process of creating a new tool. METHODS: A focus group of ten healthcare professionals with expertise in pediatric cancer symptom management and a patient advocate were convened. First, the group identified the optimal properties of a symptom screening tool for pediatric cancer patients. Next, the previously identified symptom assessment scales were evaluated against these properties. As none of the existing scales were adequate for symptom screening, a nominal group technique was used to identify the most important symptoms for inclusion in a new symptom screening tool. RESULTS: Optimal properties of a symptom screening tool included minimal respondent burden, inclusion of 15 items or less, and inclusion of the most burdensome symptoms. None of the previously identified scales were adequate because they lacked content validity and were too long or would be too hard for children to understand. Nominal group technique identified 15 items to be included; an initial draft was developed and named the Symptom Screening in Pediatrics (SSPedi) Tool. CONCLUSIONS: This study identified the lack of an appropriate symptom screening tool for use by pediatric cancer patients. A preliminary version of SSPedi was developed. Subsequent work will ensure that it is understandable by children and evaluate its psychometric properties.

Development and evaluation of evidence-informed clinical nursing protocols for remote assessment, triage and support of cancer treatment-induced symptoms.

The study objective was to develop and evaluate a template for evidence-informed symptom protocols for use by nurses over the telephone for the assessment, triage, and management of patients experiencing cancer treatment-related symptoms. Guided by the CAN-IMPLEMENT© methodology, symptom protocols were developed by, conducting a systematic review of the literature to identify clinical practice guidelines and systematic reviews, appraising their quality, reaching consensus on the protocol template, and evaluating the two symptom protocols for acceptability and usability. After excluding one guideline due to poor overall quality, the symptom protocols were developed using 12 clinical practice guidelines (8 for diarrhea and 4 for fever). AGREE Instrument (Appraisal of Guidelines for Research and Evaluation) rigour domain subscale ratings ranged from 8% to 86% (median 60.1 diarrhea; 40.5 fever). Included guidelines were used to inform the protocols along with the Edmonton Symptom Assessment System questionnaire to assess symptom severity. Acceptability and usability testing of the symptom populated template with 12 practicing oncology nurses revealed high readability (n = 12), just the right amount of information (n = 10), appropriate terms (n = 10), fit with clinical work flow (n = 8), and being self-evident for how to complete (n = 5). Five nurses made suggestions and 11 rated patient self-management strategies the highest for usefulness. This new template for symptom protocols can be populated with symptom-specific evidence that nurses can use when assessing, triaging, documenting, and guiding patients to manage their-cancer treatment-related symptoms.

Emergency department visits for symptoms experienced by oncology patients: a systematic review.

PURPOSE: The aim of this review was to explore the range and prevalence of cancer treatment or disease-related symptoms in the emergency department and their associated outcomes. METHODS: A systematic review examined studies cited in Medline, Embase, PsycINFO, and CINAHL published from 1980 to July 2011. Eligible studies measured emergency department visits for symptom assessment in adult oncology patients. Two reviewers independently screened citations and double data extraction was used. Descriptive analysis was conducted. RESULTS: Of 1,298 citations, six prospective and 12 retrospective descriptive studies were included. Of these, eight focused on multiple symptoms and 10 targeted specific symptoms. The studies were published between 1995 and 2011, conducted in seven countries, and had a median sample size of 143 (range 9-27,644). Of the 28 symptoms reported, the most common were febrile neutropenia, infection, pain, fever, and dyspnea. Definitions provided for individual symptoms were inconsistent. Of 16 studies reporting admission rates, emergency visits resulted in hospital admissions 58 % (median) of the time in multi-symptom studies (range 31 % to 100 %) and 100 % (median) of the time in targeted symptoms studies (range 39 % to 100 %). Of 11 studies reporting mortality rates, 13 % (median) of emergency visits captured in multi-symptom studies (range 1 % to 56 %) and 20 % (median) of visits in targeted symptoms studies (range 4 % to 67 %) resulted in death. CONCLUSIONS: Individuals with cancer present to emergency departments with a myriad of symptoms. Over half of emergency department visits resulted in hospital admissions. Few symptoms were defined adequately to compare data across studies, thereby revealing an important gap in cancer symptom reporting.

Priorities, barriers and facilitators for remote support of cancer symptoms: a survey of Canadian oncology nurses.

A survey of 368 Canadian oncology nurses revealed that 54% provided remote support to oncology patients. The most common symptoms identified were fatigue, pain, nausea, constipation, and anxiety. Frequent symptoms which nurses felt low confidence in managing were anxiety, neuropathy, depression, anorexia and skin alterations. Most nurses agreed that guidelines were needed that were accessible, and improved continuity of care. Forty-three per cent of respondents felt that existing guidelines were inadequate for complex symptoms. Only 54% of respondents agreed they had received enough symptom management training. Common barriers included time constraints, obtaining accurate patient information via telephone, high workloads and knowledge or training deficits. Facilitating factors for provision of remote support included access to an electronic health record, accessible team members, available technology and ease of documentation.

Safe handling of parenteral cytotoxics: recommendations for ontario.

In caring for patients with cancer, health care workers may be exposed to cytotoxic agents. Recommendations are needed to mitigate potential risks for cancer and adverse reproductive outcomes associated with exposure.

A survey of oncology advanced practice nurses in Ontario: profile and predictors of job satisfaction.

The purpose of this study was to examine role structures and processes and their impact on job satisfaction for oncology advanced practice nurses (APNs) in Ontario. APNs caring for adult, paediatric or palliative patients in integrated regional cancer programs, tertiary care hospitals or community hospitals and agencies were invited to complete a mailed self-report questionnaire. A total of 73 of 77 APNs participated in the study. Most APNs (55%) were acute care nurse practitioners employed by regional cancer programs or tertiary care hospitals. Adult patients with breast or haematological cancers and those receiving initial treatment or palliative care were the primary focus of APN roles. APN education needs related to specialization in oncology, leadership and research were identified. Overall, APNs were minimally satisfied with their roles. Role confidence (beta = .404, p = .001) and the number of overtime hours (beta = -.313, p = .008) were respective positive and negative predictors of APN job satisfaction. Progress in role development is described, and recommendations for improving role development and expanding the delivery of oncology APN services are provided.