PMCC PMCC

Search tips
Search criteria

Advanced
Results 1-25 (37)
 

Clipboard (0)
None

Select a Filter Below

Year of Publication
1.  Bringing psychosocial support to headache sufferers using information and communication technology: Lessons learned from asking potential users what they want 
BACKGROUND:
Headaches are a major concern for which psychosocial interventions are recommended. However, headache sufferers do not always have ready access to these interventions. Technology has been used to improve access, especially in young people.
OBJECTIVES:
To examine user preferences to inform the development of an Internet-based psychosocial intervention including smartphone technology, referred to as the Wireless Headache Intervention.
METHODS:
The methodology followed a participatory design cycle, including 25 headache sufferers (14 to 28 years of age) who informed the prototype design. All participants were familiar with smartphones and the Internet. Through two iterative cycles of focus groups stratified according to age, qualitative data were collected by asking user preferences for the different planned components of the intervention (ie, smartphone pain diary, Internet-based self-management treatment, social support) and other relevant aspects (ie, smartphone versus computer delivery, and ways of reaching target audience). NVivo 8 with content analysis was used to analyze data and reflect themes as guided by the thematic survey.
RESULTS:
Participants reported a preference for completing the smart-phone pain diary on a daily basis. Participants believed that the program should facilitate easy access to information regarding headaches and management strategies. They also wanted access to other headache sufferers and experts. Participants believed that the program should be customizable and interactive. They reinforced the need and value of an integrated smartphone and Internet-based application.
CONCLUSIONS:
The results provide insight into a participatory design to guide design decisions for the type of intervention for which success relies largely on self-motivation. The results also provide recommendations for design of similar interventions that may benefit from the integration of mobile applications to Internet-based interventions. The present research contributes to the theoretical frameworks that have been formulated for the development of Internet-based applications.
PMCID: PMC3938344  PMID: 24511572
Distance treatment; Focus group; Headache; Psychosocial intervention; Wireless
2.  Implementation of multidimensional knowledge translation strategies to improve procedural pain in hospitalized children 
Background
Despite extensive research, institutional policies, and practice guidelines, procedural pain remains undertreated in hospitalized children. Knowledge translation (KT) strategies have been employed to bridge the research to practice gap with varying success. The most effective single or combination of KT strategies has not been found. A multifaceted KT intervention, Evidence-based Practice for Improving Quality (EPIQ), that included tailored KT strategies was effective in improving pain practices and clinical outcomes at the unit level in a prospective comparative cohort study in 32 hospital units (16 EPIQ intervention and 16 Standard Care), in eight pediatric hospitals in Canada.
In a study of the 16 EPIQ units (two at each hospital) only, the objectives were to: determine the effectiveness of evidence-based KT strategies implemented to achieve unit aims; describe the KT strategies implemented and their influence on pain assessment and management across unit types; and identify facilitators and barriers to their implementation.
Methods
Data were collected from each EPIQ intervention unit on targeted pain practices and KT strategies implemented, through chart review and a process evaluation checklist, following four intervention cycles over a 15-month period.
Results
Following the completion of the four cycle intervention, 78% of 23 targeted pain practice aims across units were achieved within 80% of the stated aims. A statistically significant improvement was found in the proportion of children receiving pain assessment and management, regardless of pre-determined aims (p < 0.001). The median number of KT strategies implemented was 35 and included reminders, educational outreach and materials, and audit and feedback. Units successful in achieving their aims implemented more KT strategies than units that did not. No specific type of single or combination of KT strategies was more effective in improving pain assessment and management outcomes. Tailoring KT strategies to unit context, support from unit leadership, staff engagement, and dedicated time and resources were identified as facilitating effective implementation of the strategies.
Conclusions
Further research is required to better understand implementation outcomes, such as feasibility and fidelity, how context influences the effectiveness of multifaceted KT strategies, and the sustainability of improved pain practices and outcomes over time.
doi:10.1186/s13012-014-0120-1
PMCID: PMC4263210
Pediatric procedural pain; Knowledge translation strategies; Tailored interventions; Quality improvement
3.  iCanCope with Pain™: User-centred design of a web- and mobile-based self-management program for youth with chronic pain based on identified health care needs 
Chronic pain self-management involves providing patients with knowledge, coping strategies and social support that help them to manage their pain. This type of intervention has been shown to be useful in treating chronic pain; however, many eligible chronic pain patients never receive such treatment due to limited accessibility and high cost. The use of Internet-based cognitive behavioural therapy has the potential to change this. In this study, the authors report their progress in the development of an Internet- and smartphone-based application for chronic pain self-management.
BACKGROUND:
While there are emerging web-based self-management programs for children and adolescents with chronic pain, there is currently not an integrated web- and smartphone-based app that specifically addresses the needs of adolescents with chronic pain.
OBJECTIVES:
To conduct a needs assessment to inform the development of an online chronic pain self-management program for adolescents, called iCanCope with Pain™.
METHODS:
A purposive sample of adolescents (n=23; 14 to 18 years of age) was recruited from two pediatric chronic pain clinics in Ontario. Interdisciplinary health care providers were also recruited from these sites. Three focus groups were conducted with adolescents (n=16) and one with pediatric health care providers (n=7). Individual adolescent interviews were also conducted (n=7).
RESULTS:
Qualitative analysis uncovered four major themes: pain impact; barriers to care; pain management strategies; and transition to adult care. Pain impacted social, emotional, physical and role functioning, as well as future goals. Barriers to care were revealed at the health care system, patient and societal levels. Pain management strategies included support systems, and pharmacological, physical and psychological approaches. Transition subthemes were: disconnect between pediatric and adult systems; skills development; parental role; and fear/anxiety. Based on these identified needs, the iCanCope with Pain™ architecture will include the core theory-based functionalities of: symptom self-monitoring; personalized goal setting; pain coping skills training; peer-based social support; and chronic pain education.
CONCLUSIONS:
The proposed iCanCope with Pain™ program aims to address the self-management needs of adolescents with chronic pain by improving access to disease information, strategies to manage symptoms and social support.
PMCID: PMC4197753  PMID: 25000507
Adolescent; Chronic pain; E-health; Mobile-health; Needs assessment; Self-management
4.  Training highly qualified health research personnel: The Pain in Child Health consortium 
The Pain in Child Health (PICH) consortium is a Strategic Training Initiative in Health Research funded by the Canadian Institutes of Health Research. The PICH represents a community of interdisciplinary researchers whose goal is to support the education of highly qualified personnel and to promote research on the prevention and relief of pediatric pain. The authors of this article report on the success of the PICH since its inception in 2002.
BACKGROUND AND OBJECTIVES:
Pain in Child Health (PICH) is a transdisciplinary, international research training consortium. PICH has been funded since 2002 as a Strategic Training Initiative in Health Research of the Canadian Institutes of Health Research, with contributions from other funding partners and the founding participation of five Canadian universities. The goal of PICH has been to create a community of scholars in pediatric pain to improve child health outcomes.
METHODS:
Quantitative analyses enumerated PICH faculty, trainees, training activities and scientific outputs. Interviews with PICH stakeholders were analyzed using qualitative methods capturing perceptions of the program’s strengths, limitations, and opportunities for development and sustainability.
RESULTS:
PICH has supported 218 trainee members from 2002 through 2013, from 14 countries and more than 16 disciplines. The faculty at the end of 2013 comprised nine co-principal investigators, 14 Canadian coinvestigators, and 28 Canadian and international collaborators. Trainee members published 697 peer-reviewed journal articles on pediatric pain through 2013, among other research dissemination activities including conference presentations and webinars. Networks have been established between new and established researchers across Canada and in 13 other countries. Perceptions from stakeholders commended PICH for its positive impact on the development of pediatric pain researchers. Stakeholders emphasized skills and abilities gained through PICH, the perceived impact of PICH training on this research field, and considerations for future training in developing researchers in pediatric pain.
CONCLUSIONS:
PICH has been successfully developing highly qualified health research personnel within a Canadian and international community of pediatric pain scholarship.
PMCID: PMC4197754  PMID: 25299474
Interdisciplinary; International; Pediatric pain; Research; Training; Transdiscliplinary
5.  Commercially Available Mobile Phone Headache Diary Apps: A Systematic Review 
JMIR mHealth and uHealth  2014;2(3):e36.
Background
Headache diaries are often used by headache sufferers to self-monitor headaches. With advances in mobile technology, mobile electronic diary apps are becoming increasingly common.
Objective
This review aims to identify and evaluate all commercially available mobile headache diary apps for the two most popular mobile phone platforms, iOS and Android.
Methods
The authors developed a priori a set of 7 criteria that define an ideal headache diary app intended to help headache sufferers better understand and manage their headaches, while providing relevant data to health professionals. The app criteria were intended as minimum requirements for an acceptable headache diary app that could be prescribed by health care professionals. Each app was evaluated and scored against each criterion.
Results
Of the 38 apps identified, none of the apps met all 7 app criteria. The 3 highest scoring apps, meeting 5 of the app criteria, were iHeadache (developed by Better QOL), ecoHeadache (developed by ecoTouchMedia), and Headache Diary Pro (developed by Froggyware). Only 18% of the apps were created with scientific or clinical headache expertise and none of the apps reported on psychometric properties.
Conclusions
Despite the growing market and demand, there is a concerning lack of scientific expertise and evidence base associated with headache diary apps.
doi:10.2196/mhealth.3452
PMCID: PMC4147710  PMID: 25138438
headache; diary; apps; smartphone; mobile phone; technology; mHealth; review
6.  Facilitating Pediatric Patient-Provider Communications Using Wireless Technology in Children and Adolescents with Sickle Cell Disease 
Introduction
Using wireless devices may potentially transform delivery of primary care services in sickle cell disease (SCD). The study examined text message communications between patients and an advanced practice registered nurse (APRN) and the different primary care activities that emerged using wireless technology.
Methods
Patients (n=37; mean age 13.9 ± 1.8 years; 45.9% males; 54.1% females) engaged in intermittent text conversations with the advanced practice registered nurse as part of the Wireless Pain Intervention Program. Content Analyses were used to analyze the content of text message exchanges between patients and the APRN.
Results
The primary care needs that emerged were related to pain and symptom management and sickle cell crisis prevention. Two primary care categories (collaborating and coaching), four primary care subcategories (screening, referring, informing, supporting), and 16 primary care activities were evident in text conversations.
Discussion
The use of wireless technology may facilitate screening, prompt management of pain and symptoms, prevention or reduction of SCD related complications, more efficient referral for treatments, timely patient education, and psychosocial support in children and adolescents with SCD.
doi:10.1016/j.pedhc.2012.02.004
PMCID: PMC3449226  PMID: 22446036
sickle cell disease; pain; symptoms; wireless technology; smartphone; text message communications
7.  Sleep problems and associated factors in children with juvenile idiopathic arthritis: a systematic review 
Background
Sleep problems are common among children with chronic illnesses such as Juvenile Idiopathic Arthritis (or JIA). However, little is known about the frequency and severity of sleep disturbance(s) and the factors that are associated with sleep problems in children with JIA. The mechanism(s) of the relationships characterizing the development or exacerbation of sleep problems in children with JIA are still unknown, however studies have reported an association. The purpose of this study was to synthesize existing research related to sleep problems in children with JIA.
Methods
The Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) statement guided the conduct and reporting of this review. An experienced librarian conducted searches in MEDLINE, EMBASE, PsychINFO, CINAHL, and the Cochrane Central Register of Controlled Trials from inception to January 2012, to identify potentially relevant citations. Two members independently selected, rated methodological quality using the QUIPS tool, and extracted data from included studies.
Results
Ten studies were included and findings varied across studies; studies were mostly cross-sectional, or case-controlled designs, with only one cohort study available. Four studies found that children and adolescents diagnosed with JIA had significantly more sleep disturbances when compared to healthy controls. Pain was most often associated with sleep disturbances. The heterogeneous findings highlight the complex relationships between JIA and sleep, and low methodological quality of studies in the field.
Conclusions
This review supports an association between poor sleep and increased symptoms related to JIA, specifically the experience of pain. However, results need to be interpreted cautiously given the inconsistent findings regarding factors associated with sleep problems in JIA, the limited evidence available, and its low quality. Furthermore it is not yet determined if the poor sleep patterns predate the symptoms reported with JIA. More research is vital to understanding the factors that predict or perpetuate poor sleep in children and adolescents diagnosed with JIA.
doi:10.1186/1546-0096-12-19
PMCID: PMC4060142  PMID: 24940168
Juvenile idiopathic arthritis; Sleep problems; Systematic review; Prognostic factor
8.  Pain-QuILT: Clinical Feasibility of a Web-Based Visual Pain Assessment Tool in Adults With Chronic Pain 
Background
Chronic pain is a prevalent and debilitating problem. Accurate and timely pain assessment is critical to pain management. In particular, pain needs to be consistently tracked over time in order to gauge the effectiveness of different treatments. In current clinical practice, paper-based questionnaires are the norm for pain assessment. However, these methods are not conducive to capturing or tracking the complex sensations of chronic pain. Pain-QuILT (previously called the Iconic Pain Assessment Tool) is a Web-based tool for the visual self-report and tracking of pain (quality, intensity, location, tracker) in the form of time-stamped records. It has been iteratively developed and evaluated in adolescents and adults with chronic pain, including usability testing and content validation. Clinical feasibility is an important stepping-stone toward widespread implementation of a new tool. Our group has demonstrated Pain-QuILT clinical feasibility in the context of a pediatric chronic pain clinic. We sought to extend these findings by evaluating Pain-QuILT clinical feasibility from the perspective of adults with chronic pain, in comparison with standard paper-based methods (McGill Pain Questionnaire [MPQ] and Brief Pain Inventory [BPI]).
Objective
The goal of our study was to assess Pain-QuILT for (1) ease of use, (2) time for completion, (3) patient preferences, and (4) to explore the patterns of self-reported pain across the Pain-QuILT, MPQ, and BPI.
Methods
Participants were recruited during a scheduled follow-up visit at a hospital-affiliated pain management and physical rehabilitation clinic in southwestern Ontario. Participants self-reported their current pain using the Pain-QuILT, MPQ, and BPI (randomized order). A semistructured interview format was used to capture participant preferences for pain self-report.
Results
The sample consisted of 50 adults (54% female, 27/50) with a mean age of 50 years. Pain-QuILT was rated as significantly easier to use than both the MPQ and BPI (P<.01) and was also associated with the fewest difficulties in completion. On average, the time to complete each tool was less than 5 minutes. A majority of participants (58%, 29/50) preferred Pain-QuILT for reporting their pain over alternate methods (16%, 8/50 for MPQ; 14%, 7/50 for BPI; 12%, 6/50 for “other”). The most commonly chosen pain descriptors on MPQ were matched with Pain-QuILT across 91% of categories. There was a moderate-to-high correlation between Pain-QuILT and BPI scores for pain intensity (r=.70, P<.01).
Conclusions
The results of this clinical feasibility study in adults with chronic pain are consistent with our previously published pediatric findings. Specifically, data indicate that Pain-QuILT is (1) easy to use, (2) quick to complete, (3) preferred by a majority of patients, and (4) correlated as expected with validated pain measures. As a digital, patient-friendly method of assessing and tracking pain, we conclude that Pain-QuILT has potential to add significant value as one standard component of chronic pain management.
doi:10.2196/jmir.3292
PMCID: PMC4034112  PMID: 24819478
chronic pain; assessment tool; Internet; clinical feasibility
9.  A qualitative review of the psychometric properties and feasibility of electronic headache diaries for children and adults: Where we are and where we need to go 
BACKGROUND:
While paper headache pain diaries have been used to determine the effectiveness of headache treatments in clinical trials, recent advances in information and communication technologies have resulted in the burgeoning use of electronic diaries (e-diaries) for headache pain.
OBJECTIVE:
To qualitatively review headache e-diaries, assess their measurement properties, examine measurement components and compare these components with recommended reporting guidelines.
METHODS:
The databases Medline, the Cumulative Index to Nursing and Allied Health Literature, Embase, PsychInfo, the Education Resources Information Centre and ISI Web of Science were searched for self-report headache e-diaries for children and adults. A total of 21 publications that involved e-diaries were found; five articles reported on the development of an e-diary and 16 used an e-diary as an outcome measure in randomized controlled trials or observational studies. The diary measures’ components, features and psychometric properties, as well as the quality of evidence of their psychometric properties, were evaluated.
RESULTS:
Five headache e-diaries met the a priori criteria and were included in the final analysis. None of these e-diaries had well-developed evidence of reliability and validity. Three e-diaries showed evidence of feasibility. E-diaries with ad hoc measures developed by the study investigators were most common, with little to no supportive evidence of reliability and/or validity. Compliance with the reporting guidelines was variable, with only one-half of the e-diaries measuring the recommended primary outcome of headache frequency.
CONCLUSIONS:
Specific recommendations regarding the development (including essential components) and testing of headache e-diaries are discussed. Further research is needed to strengthen the measurement of headache pain in clinical trials using headache e-diaries.
PMCID: PMC3673932  PMID: 23748255
Adults; Children; Electronic pain diaries; Headache diary; Psychometric properties
10.  Assessing pain intensity in children with chronic pain: Convergent and discriminant validity of the 0 to 10 numerical rating scale in clinical practice 
Assessment of children’s self-reported pain is essential for pain management, and must be conducted using a measure that is simple, valid and easy to administer. The numerical analogue scale, on which individuals rate their pain on a scale of 0 to 10, is validated and widely used in adults experiencing both acute and chronic pain. The scale is also often used in children and is believed to be an appropriate tool, although this has not been formally assessed among children experiencing chronic pain. Accordingly, the authors of this article conducted a retrospective analysis of the numerical rating scale using data obtained during assessment at a pediatric chronic pain clinic in Toronto, Ontario
BACKGROUND:
In clinical practice, children are often asked to rate their pain intensity on a simple 0 to 10 numerical rating scale (NRS). Although the NRS is a well-established measure for adults, no study has yet evaluated its validity for children with chronic pain.
OBJECTIVES:
To examine the convergent and discriminant validity of the NRS as it is used within regular clinical practice to document pain intensity for children with chronic pain. Interchangeability between the NRS and an analogue pain measure was also assessed.
METHODS:
A cohort of 143 children (mean [± SD] age 14.1±2.4 years; 72% female) rated their pain intensity (current, usual, lowest and strongest levels) on a verbally administered 0 to 10 NRS during their first appointment at a specialized pain clinic. In a separate session that occurred either immediately before or after their appointment, children also rated their pain using the validated 0 to 10 coloured analogue scale (CAS).
RESULTS:
NRS ratings met a priori criteria for convergent validity (r>0.3 to 0.5), correlating with CAS ratings at all four pain levels (r=0.58 to 0.68; all P<0.001). NRS for usual pain intensity differed significantly from an affective pain rating, as hypothesized (Z=2.84; P=0.005), demonstrating discriminant validity. The absolute differences between NRS and CAS pain scores were small (range 0.98±1.4 to 1.75±1.9); however, the two scales were not interchangeable.
CONCLUSIONS:
The present study provides preliminary evidence that the NRS is a valid measure for assessing pain intensity in children with chronic pain.
PMCID: PMC4158959  PMID: 24712019
Children; Chronic pain; Clinical pain assessment; Numerical rating scale; Pain intensity scales
11.  A Smartphone-Based Pain Management App for Adolescents With Cancer: Establishing System Requirements and a Pain Care Algorithm Based on Literature Review, Interviews, and Consensus 
JMIR Research Protocols  2014;3(1):e15.
Background
Pain that occurs both within and outside of the hospital setting is a common and distressing problem for adolescents with cancer. The use of smartphone technology may facilitate rapid, in-the-moment pain support for this population. To ensure the best possible pain management advice is given, evidence-based and expert-vetted care algorithms and system design features, which are designed using user-centered methods, are required.
Objective
To develop the decision algorithm and system requirements that will inform the pain management advice provided by a real-time smartphone-based pain management app for adolescents with cancer.
Methods
A systematic approach to algorithm development and system design was utilized. Initially, a comprehensive literature review was undertaken to understand the current body of knowledge pertaining to pediatric cancer pain management. A user-centered approach to development was used as the results of the review were disseminated to 15 international experts (clinicians, scientists, and a consumer) in pediatric pain, pediatric oncology and mHealth design, who participated in a 2-day consensus conference. This conference used nominal group technique to develop consensus on important pain inputs, pain management advice, and system design requirements. Using data generated at the conference, a prototype algorithm was developed. Iterative qualitative testing was conducted with adolescents with cancer, as well as pediatric oncology and pain health care providers to vet and refine the developed algorithm and system requirements for the real-time smartphone app.
Results
The systematic literature review established the current state of research related to nonpharmacological pediatric cancer pain management. The 2-day consensus conference established which clinically important pain inputs by adolescents would require action (pain management advice) from the app, the appropriate advice the app should provide to adolescents in pain, and the functional requirements of the app. These results were used to build a detailed prototype algorithm capable of providing adolescents with pain management support based on their individual pain. Analysis of qualitative interviews with 9 multidisciplinary health care professionals and 10 adolescents resulted in 4 themes that helped to adapt the algorithm and requirements to the needs of adolescents. Specifically, themes were overall endorsement of the system, the need for a clinical expert, the need to individualize the system, and changes to the algorithm to improve potential clinical effectiveness.
Conclusions
This study used a phased and user-centered approach to develop a pain management algorithm for adolescents with cancer and the system requirements of an associated app. The smartphone software is currently being created and subsequent work will focus on the usability, feasibility, and effectiveness testing of the app for adolescents with cancer pain.
doi:10.2196/resprot.3041
PMCID: PMC3978558  PMID: 24646454
adolescent; pain; neoplasms; cellular phone; algorithms
12.  Remote Monitoring of Pain & Symptoms using Wireless Technology in Children & Adolescents with Sickle Cell Disease 
Purpose
The purpose of this study was to examine 1) symptoms; 2) pain characteristics (intensity, location, quality); 3) pain medications and nonpharmacological strategies used for pain; 4) thoughts and feelings; and 5) health care visits. We also examined the relationship between pain and sleep.
Data Sources
Pain and symptoms were entered on an electronic e-Diary using a smartphone and were remotely monitored by an advanced practice registered nurse. Sixty-seven children and adolescents (10 to 17 years) reported mild to severe pain at home that did not require health care visits. Symptoms reported were: 1) general symptoms such as tiredness/fatigue (34.7%), headache (20.8%), yellowing of the eyes (28.4%); 2) respiratory symptoms such as sniffling (32.9%), coughing (19.1%), changes in breathing (10.0%); and 3) musculoskeletal symptoms such as stiffness in joints (15.8%). A significant negative correlation was found between pain and sleep (r = −0.387, p=0.024). Factors that predict pain included previous history of SCD related events, symptoms, and negative thoughts.
Conclusion
Pain and multiple symptoms entered on a web-based e-Diary were remotely monitored by an APRN and prompted communications, further evaluation, and recommendations.
Implications for Practice
Remote monitoring using wireless technology may facilitate timely management of pain and symptoms and minimize negative consequences in SCD.
doi:10.1111/j.1745-7599.2012.00754.x
PMCID: PMC3539233  PMID: 23279278
sickle cell disease; remote monitoring; pain; symptoms; wireless technology; smartphone; children; adolescents
13.  Assessment and management of pain in juvenile idiopathic arthritis 
Juvenile idiopathic arthritis (JIA) is a common chronic childhood illness. Pain is the most common and distressing symptom of JIA. Pain has been found to negatively impact all aspects of functioning, including physical, social, emotional and role functions. Children with arthritis continue to experience clinically significant pain despite adequate doses of disease-modifying antirheumatic drugs and anti-inflammatory agents. The present article reviews the prevalence and nature of pain in JIA, the biopsychosocial factors that contribute to the pain experience, current approaches to assessing pain in this population, and ways of managing both acute and persistent pain using pharmacological, physical and psychological therapies. Finally, new approaches to delivering disease self-management treatment for youth with JIA using the Internet will be outlined.
PMCID: PMC3659013  PMID: 23248812
Assessment; Internet; Juvenile idiopathic arthritis; Management; Pain
14.  The value of usability testing for Internet-based adolescent self-management interventions: “Managing Hemophilia Online” 
Background
As adolescents with hemophilia approach adulthood, they are expected to assume responsibility for their disease management. A bilingual (English and French) Internet-based self-management program, “Teens Taking Charge: Managing Hemophilia Online,” was developed to support adolescents with hemophilia in this transition. This study explored the usability of the website and resulted in refinement of the prototype.
Methods
A purposive sample (n=18; age 13–18; mean age 15.5 years) was recruited from two tertiary care centers to assess the usability of the program in English and French. Qualitative observations using a “think aloud” usability testing method and semi-structured interviews were conducted in four iterative cycles, with changes to the prototype made as necessary following each cycle. This study was approved by research ethics boards at each site.
Results
Teens responded positively to the content and appearance of the website and felt that it was easy to navigate and understand. The multimedia components (videos, animations, quizzes) were felt to enrich the experience. Changes to the presentation of content and the website user-interface were made after the first, second and third cycles of testing in English. Cycle four did not result in any further changes.
Conclusions
Overall, teens found the website to be easy to use. Usability testing identified end-user concerns that informed improvements to the program. Usability testing is a crucial step in the development of Internet-based self-management programs to ensure information is delivered in a manner that is accessible and understood by users.
doi:10.1186/1472-6947-13-113
PMCID: PMC3856537  PMID: 24094082
Usability testing; Internet; Patient education; Self-management; Adolescent; Hemophilia
15.  Parental risk factors for the development of pediatric acute and chronic postsurgical pain: a longitudinal study 
Journal of Pain Research  2013;6:727-741.
Background
The goal of this longitudinal study was to examine the associations among psychological factors and pain reports of children and their parents over the 12 month period after pediatric surgery.
Materials and methods
Included in the study were 83 children aged 8–18 years undergoing major surgery. In each case, the child and one of their parents completed measures of pain intensity and unpleasantness, psychological function, and functional disability at 48–72 hours, 2 weeks (child only), 6 months, and 12 months after surgery.
Results
The strength of the correlation coefficients between the psychological measures of the parent and their child increased significantly over time. There was a fair level of agreement between parent ratings of child acute and chronic pain (6 months after surgery) and the child’s actual ratings. Parent and child pain anxiety scores 48–72 hours after surgery interacted significantly to predict pain intensity, pain unpleasantness, and functional disability levels 2 weeks after discharge from hospital. Parent pain catastrophizing scores 48–72 hours after surgery predicted child pain intensity reports 12 months later.
Conclusion
These results raise the possibility that as time from surgery increases, parents exert greater and greater influence over the pain response of their children, so that by 12 months postsurgery mark, parent pain catastrophizing (measured in the days after surgery) is the main risk factor for the development of postsurgical pain chronicity.
doi:10.2147/JPR.S51055
PMCID: PMC3792832  PMID: 24109194
pain anxiety; pain catastrophizing; children; parental risk factors; postsurgical pain
16.  Judging the quality of evidence in reviews of prognostic factor research: adapting the GRADE framework 
Systematic Reviews  2013;2:71.
Background
Prognosis research aims to identify factors associated with the course of health conditions. It is often challenging to judge the overall quality of research evidence in systematic reviews about prognosis due to the nature of the primary studies. Standards aimed at improving the quality of primary studies on the prognosis of health conditions have been created, but these standards are often not adequately followed causing confusion about how to judge the evidence.
Methods
This article presents a proposed adaptation of Grading of Recommendations Assessment, Development and Evaluation (GRADE), which was developed to rate the quality of evidence in intervention research, to judge the quality of prognostic evidence.
Results
We propose modifications to the GRADE framework for use in prognosis research along with illustrative examples from an ongoing systematic review in the pediatric pain literature. We propose six factors that can decrease the quality of evidence (phase of investigation, study limitations, inconsistency, indirectness, imprecision, publication bias) and two factors that can increase it (moderate or large effect size, exposure-response gradient).
Conclusions
We describe criteria for evaluating the potential impact of each of these factors on the quality of evidence when conducting a review including a narrative synthesis or a meta-analysis. These recommendations require further investigation and testing.
doi:10.1186/2046-4053-2-71
PMCID: PMC3930077  PMID: 24007720
GRADE; Prognosis; Quality of evidence
17.  Usability Testing of a Smartphone for Accessing a Web-Based e-Diary for Self-Monitoring of Pain and Symptoms in Sickle Cell Disease 
We examined the usability of smartphones for accessing a web-based e-Diary for self-monitoring symptoms in children and adolescents with sickle cell disease (SCD). One group of participants (n=10; mean age 13.1 ± 2.4 years; 5M; 5F) responded to questions using pre-completed paper-based measures. A second group (n=21; mean age 13.4 ± 2.4 years; 10M;11F) responded based on pain and symptoms they experienced over the previous 12 hours. The e-Diary was completed with at least 80% accuracy when compared to paper-based measures. Symptoms experienced over the previous 12 hours included feeling tired (33.3%), headache (28.6%), coughing (23.8%), lack of energy/fatigue (19.0%), yellowing of the eyes (19.0%), pallor (19.0%), irritability (19.0%), stiffness in joints (19.0%), general weakness (14.3%), and pain (14.3%), rating on average as 2.0 ± 1.7 (on 0 to 10 scale). Overall, sleep was good (8.1 ± 1.4 on the 0 to 10 scale). In conclusion, children with SCD were able to use smartphones to access a web-based e-Diary for reporting pain and symptoms. Smartphones may improve self-reporting of symptoms and communication between patients and their health care providers, who may consequently be able to improve pain and symptom management in children and adolescents with SCD in a timely manner.
doi:10.1097/MPH.0b013e318257a13c
PMCID: PMC3382023  PMID: 22627570
e-Diary; pain; symptoms; children and adolescents; sickle cell disease
18.  Benchmarking pain outcomes for children with sickle cell disease hospitalized in a tertiary referral pediatric hospital 
BACKGROUND:
Painful vaso-occlusive crisis (VOC) is the most common reason for hospitalization in children with sickle cell disease.
OBJECTIVE:
To benchmark pain outcomes in sickle cell disease, including process outcomes (eg, pain assessment and documentation practices, pain management interventions) and clinical outcomes (eg, pain intensity over hospital stay), to identify areas for improvement.
METHODS:
A retrospective study was conducted on electronic charts of children hospitalized with a primary diagnosis of VOC between July 2007 and August 2008.
RESULTS:
A convenience sample of 50 admissions was used. In terms of clinical outcomes, patients presented to the emergency department with an initial median pain intensity of 9/10 (interquartile range 8/10 to 10/10). Forty-three per cent had not used opioids for pain relief at home. The mean (± SD) length of stay was 4.0±2.3 days. For most patients, median scores for highest daily pain intensity remained moderate to high throughout hospitalization, although scores did decrease significantly per day of hospitalization. In terms of process outcomes, pain intensity was assessed according to hospital standards on 25% of days in both the emergency department and the ward. There was no discrepancy between prescribed and administered opioid doses and medication use. In 95% of cases, strong opioid use was in a subtherapeutic or low therapeutic dosage range.
CONCLUSIONS:
The results showed three areas to target for improvement: improved pain assessment and documentation using valid pain tools; more aggressive multimodal management for peak VOC pain; and better education and support for pain management at home. Further studies are required to evaluate optimal pain treatment practices.
PMCID: PMC3411379  PMID: 22891195
Children; Pain assessment; Pain management; Sickle cell disease
19.  Improvements in pain outcomes in a Canadian pediatric teaching hospital following implementation of a multifaceted, knowledge translation initiative 
BACKGROUND:
A previous audit performed at a tertiary/quaternary pediatric hospital in Toronto, Ontario, demonstrated suboptimal assessment and treatment of children’s pain. Knowledge translation (KT) initiatives (education, reminders, audit and feedback) were implemented to address identified care gaps; however, the impact is unknown.
OBJECTIVES:
To determine the impact of KT initiatives on pain outcomes including process outcomes (eg, pain assessment and management practices) and clinical outcomes (eg, pain prevalence and intensity); and to benchmark additional pain practices, particularly opioid administration and painful procedures.
METHODS:
Medical records at The Hospital for Sick Children (Toronto, Ontario) were reviewed on a single day in September 2007. Pain assessment and management practices, and pain prevalence and intensity in the preceding 24 h were recorded on a standardized data collection form. Where possible, pain outcomes were compared with previous audit results.
RESULTS:
Records of 265 inpatients were audited. Sixty-three per cent of children underwent a documented pain assessment compared with 27% in an audit conducted previously (P<0.01). Eighty-three per cent of children with documented pain received at least one pain management intervention. Overall, 51% of children received pharmacological therapy, and 15% received either a psychological or physical pain-relieving intervention. Of those assessed, 44% experienced pain in the previous 24 h versus 66% in the previous audit (P<0.01). Fewer children experienced severe pain compared with the first audit (8.7% versus 26.1%; P<0.01). One-third of children received opioids; 19% of these had no recorded pain assessment. Among 131 children who underwent a painful procedure, 21% had a concurrent pain assessment. Painful procedures were accompanied by a pain-relieving intervention in 12.5% of cases.
CONCLUSIONS:
Following KT initiatives, significant improvements in pain processes (pain assessment documentation and pain management interventions) and clinical outcomes (pain prevalence, pain intensity) were observed. Further improvements are recommended, specifically with respect to procedural pain practices and opioid utilization patterns.
PMCID: PMC3401088  PMID: 22606682
Knowledge translation; Pain assessment; Pain intensity; Pain management; Pain prevalence; Painful procedures
20.  Development and Testing of a Multidimensional iPhone Pain Assessment Application for Adolescents with Cancer 
Background
Pain is one of the most common and distressing symptoms reported by adolescents with cancer. Despite advancements in pain assessment and management research, pain due to cancer and/or its treatments continues to be poorly managed. Our research group has developed a native iPhone application (app) called Pain Squad to tackle the problem of poorly managed pain in the adolescent with cancer group. The app functions as an electronic pain diary and is unique in its ability to collect data on pain intensity, duration, location, and the impact pain has on an adolescent’s life (ie, relationships, school work, sleep, mood). It also evaluates medications and other physical and psychological pain management strategies used. Users are prompted twice daily at configurable times to complete 20 questions characterizing their pain and the app transmits results to a database for aggregate reporting through a Web interface. Each diary entry represents a pain case filed by an adolescent with cancer and a reward system (ie, moving up through law-enforcement team ranks, built-in videotaped acknowledgements from fictitious officers) encourages consistent use of the diary.
Objective
Our objective was to design, develop, and test the usability, feasibility, compliance, and satisfaction of a game-based smartphone pain assessment tool for adolescents with cancer.
Methods
We used both low- and high-fidelity qualitative usability testing with qualitative semi-structured, audio-taped interviews and iterative cycles to design and refine the iPhone based Pain Squad app. Qualitative thematic analysis of interviews using constant comparative methodology captured emergent themes related to app usability. Content validity was assessed using question importance-rating surveys completed by participants. Compliance and satisfaction data were collected following a 2-week feasibility trial where users were alarmed to record their pain twice daily on the app.
Results
Thematic analysis of usability interviews showed the app to be appealing overall to adolescents. Analyses of both low- and high-fidelity testing resulted in minor revisions to the app to refine the theme and improve its usability. Adolescents resoundingly endorsed the game-based nature of the app and its virtual reward system. The importance of app pain diary questions was established by content validity analysis. Compliance with the app, assessed during feasibility testing, was high (mean 81%, SD 22%) and adolescents from this phase of the study found the app likeable, easy to use, and not bothersome to complete.
Conclusions
A multifaceted usability approach demonstrated how the Pain Squad app could be made more appealing to children and adolescents with cancer. The game-based nature and built-in reward system of the app was appealing to adolescents and may have resulted in the high compliance rates and satisfaction ratings observed during clinical feasibility testing.
doi:10.2196/jmir.2350
PMCID: PMC3636147  PMID: 23475457
neoplasms; pain; child; adolescent; youth; cellular phone; game
21.  Identification of pain-related psychological risk factors for the development and maintenance of pediatric chronic postsurgical pain 
Journal of Pain Research  2013;6:167-180.
Background
The goals of this study were to examine the trajectory of pediatric chronic postsurgical pain (CPSP) over the first year after surgery and to identify acute postsurgical predictors of CPSP.
Methods
Eighty-three children aged 8–18 years (mean 13.8, standard deviation 2.4) who underwent major orthopedic or general surgery completed pain and pain-related psychological measures at 48–72 hours, 2 weeks (pain anxiety and pain measures only), and 6 and 12 months after surgery.
Results
Results showed that 1 year after surgery, 22% of children developed moderate to severe CPSP with minimal functional disability. Children who reported a Numeric Rating Scale pain-intensity score ≥ 3 out of 10 two weeks after discharge were more than three times as likely to develop moderate/severe CPSP at 6 months and more than twice as likely to develop moderate/severe CPSP at 12 months than those who reported a Numeric Rating Scale pain score < 3 (6-month relative risk 3.3, 95% confidence interval 1.2–9.0 and 12-month relative risk 2.5, 95% confidence interval 0.9–7.5). Pain unpleasantness predicted the transition from acute to moderate/severe CPSP, whereas anxiety sensitivity predicted the maintenance of moderate/severe CPSP from 6 to 12 months after surgery.
Conclusions
This study highlights the prevalence of pediatric CPSP and the role played by psychological variables in its development/maintenance. Risk factors that are associated with the development of CPSP are different from those that maintain it.
doi:10.2147/JPR.S40846
PMCID: PMC3594915  PMID: 23503375
chronic postsurgical pain; children; adolescents; anxiety sensitivity
22.  Pain-related psychological correlates of pediatric acute post-surgical pain 
Journal of Pain Research  2012;5:547-558.
Background
Post-surgical pain is prevalent in children, yet is significantly understudied. The goals of this study were to examine gender differences in pain outcomes and pain-related psychological constructs postoperatively and to identify pain-related psychological correlates of acute post-surgical pain (APSP) and predictors of functional disability 2 weeks after hospital discharge.
Methods
Eighty-three children aged 8–18 (mean 13.8 ± 2.4) years who underwent major orthopedic or general surgery completed pain and pain-related psychological measures 48–72 hours and 2 weeks after surgery.
Results
Girls reported higher levels of acute postoperative anxiety and pain unpleasantness compared with boys. In addition, pain anxiety was significantly associated with APSP intensity and functional disability 2 weeks after discharge, whereas pain catastrophizing was associated with APSP unpleasantness.
Conclusion
These results highlight the important role played by pain-related psychological factors in the experience of pediatric APSP by children and adolescents.
doi:10.2147/JPR.S36614
PMCID: PMC3508661  PMID: 23204864
acute post-surgical pain; children; adolescents; pain anxiety; pain catastrophizing
23.  The Postoperative Pain Assessment Skills pilot trial 
A significant number of patients continue to experience unrelieved, moderate-to-severe postoperative pain, which can have cardiovascular, pulmonary, gastrointestinal and immunological consequences. Poor pain assessment skills and many common misconceptions about pain among health care professionals (HCPs) are among the factors contributing to inadequate postoperative pain assessment and relief. Although standardized patients (SP) have been successfully used as a simulation method to improve HCP’s assessment skills, not all centres have SP programs. Accordingly, this pilot study examined the efficacy of an alternative simulation method – deteriorating patient simulation – for improving HCP’s pain assessment skills.
BACKGROUND/OBJECTIVES:
Pain-related misbeliefs among health care professionals (HCPs) are common and contribute to ineffective postoperative pain assessment. While standardized patients (SPs) have been effectively used to improve HCPs’ assessment skills, not all centres have SP programs. The present equivalence randomized controlled pilot trial examined the efficacy of an alternative simulation method – deteriorating patient-based simulation (DPS) – versus SPs for improving HCPs’ pain knowledge and assessment skills.
METHODS:
Seventy-two HCPs were randomly assigned to a 3 h SP or DPS simulation intervention. Measures were recorded at baseline, immediate postintervention and two months postintervention. The primary outcome was HCPs’ pain assessment performance as measured by the postoperative Pain Assessment Skills Tool (PAST). Secondary outcomes included HCPs knowledge of pain-related misbeliefs, and perceived satisfaction and quality of the simulation. These outcomes were measured by the Pain Beliefs Scale (PBS), the Satisfaction with Simulated Learning Scale (SSLS) and the Simulation Design Scale (SDS), respectively. Student’s t tests were used to test for overall group differences in postintervention PAST, SSLS and SDS scores. One-way analysis of covariance tested for overall group differences in PBS scores.
RESULTS:
DPS and SP groups did not differ on post-test PAST, SSLS or SDS scores. Knowledge of pain-related misbeliefs was also similar between groups.
CONCLUSIONS:
These pilot data suggest that DPS is an effective simulation alternative for HCPs’ education on postoperative pain assessment, with improvements in performance and knowledge comparable with SP-based simulation. An equivalence trial to examine the effectiveness of deteriorating patient-based simulation versus standardized patients is warranted.
PMCID: PMC3298048  PMID: 22184553
Pain assessment; Randomized controlled trial; Simulation
24.  Measurement Properties of Questionnaires Assessing Complementary and Alternative Medicine Use in Pediatrics: A Systematic Review 
PLoS ONE  2012;7(6):e39611.
Objective
Complementary and alternative medicine (CAM) is commonly used by children, but estimates of that use vary widely partly due to the range of questionnaires used to assess CAM use. However, no studies have attempted to appraise measurement properties of these questionnaires. The aim of this systematic review was to critically appraise and summarize measurement properties of questionnaires of CAM use in pediatrics.
Study design
A search strategy was implemented in major electronic databases in March 2011 and conference websites, scientific journals and experts were consulted. Studies were included if they mentioned a questionnaire assessing the prevalence of CAM use in pediatrics. Members of the team independently rated the methodological quality of the studies (using the COSMIN checklist) and measurement properties of the questionnaires (using the Terwee and Cohen criteria).
Results
A total of 96 CAM questionnaires were found in 104 publications. The COSMIN checklist showed that no studies reported adequate methodological quality. The Terwee criteria showed that all included CAM questionnaires had indeterminate measurement properties. According to the Cohen score, none were considered to be a well-established assessment, two approached the level of a well-established assessment, seven were promising assessments and the remainder (n = 87) did not reach the score’s minimum standards.
Conclusion
None of the identified CAM questionnaires have been thoroughly validated. This systematic review highlights the need for proper validation of CAM questionnaires in pediatrics, which may in turn lead to improved research and knowledge translation about CAM in clinical practice.
doi:10.1371/journal.pone.0039611
PMCID: PMC3387262  PMID: 22768098
25.  Developing a standardized approach to the assessment of pain in children and youth presenting to pediatric rheumatology providers: a Delphi survey and consensus conference process followed by feasibility testing 
Background
Pain in children with rheumatic conditions such as arthritis is common. However, there is currently no standardized method for the assessment of this pain in children presenting to pediatric rheumatologists. A more consistent and comprehensive approach is needed to effectively assess, treat and monitor pain outcomes in the pediatric rheumatology population. The objectives of this study were to: (a) develop consensus regarding a standardized pain assessment tool for use in pediatric rheumatology practice and (b) test the feasibility of three mediums (paper, laptop, and handheld-based applications) for administration.
Methods
In Phase 1, a 2-stage Delphi technique (pediatric rheumatologists and allied professionals) and consensus meeting (pediatric pain and rheumatology experts) were used to develop the self- and proxy-report pain measures. In Phase 2, 24 children aged 4-7 years (and their parents), and 77 youth, aged 8-18 years, with pain, were recruited during routine rheumatology clinic appointments and completed the pain measure using each medium (order randomly assigned). The participant's rheumatologist received a summary report prior to clinical assessment. Satisfaction surveys were completed by all participants. Descriptive statistics were used to describe the participant characteristics using means and standard deviations (for continuous variables) and frequencies and proportions (for categorical variables)
Results
Completing the measure using the handheld device took significantly longer for youth (M = 5.90 minutes) and parents (M = 7.00 minutes) compared to paper (M = 3.08 and 2.28 minutes respectively p = 0.001) and computer (M = 3.40 and 4.00 minutes respectively; p < 0.001). There was no difference in the number of missed responses between mediums for children or parents. For youth, the number of missed responses varied across mediums (p = 0.047) with the greatest number of missed responses occurring with the handheld device. Most children preferred the computer (65%, p = 0.008) and youth reported no preference between mediums (p = 0.307). Most physicians (60%) would recommend the computer summary over the paper questionnaire to a colleague.
Conclusions
It is clinically feasible to implement a newly developed consensus-driven pain measure in pediatric rheumatology clinics using electronic or paper administration. Computer-based administration was most efficient for most users, but the medium employed in practice may depend on child age and economic and administrative factors.
doi:10.1186/1546-0096-10-7
PMCID: PMC3366881  PMID: 22490427
Pain; Rheumatic diseases; Pediatrics; Feasibility studies; Pain measurement

Results 1-25 (37)