Systematic review of childhood and adolescent risk and prognostic factors for persistent abdominal pain.

This review aimed to identify childhood and adolescence risk and prognostic factors associated with onset and persistence of persistent abdominal pain and related disability and assess quality of the evidence. While findings suggest a possible role for negative emotional symptoms and parental mental health as risk and prognostic factors for onset and persistence of persistent abdominal pain, the evidence is of poor quality overall and nonexistent when it comes to prognostic factors associated with disability. CONCLUSION: Further research is needed to increase confidence in existing evidence and to explore new factors. This research will inform prevention.

Usability testing of the Internet program: "Teens Taking Charge: Managing My Transplant Online".

Adolescents with SOT demonstrate high rates of medication non-adherence and higher rates of graft loss compared to all other age groups. Self-management interventions encompass information-based material designed to achieve disease-related learning and changes in the participant's knowledge and skill acquisition, while providing social support. These interventions have had some success in chronic disease populations by reducing symptoms and promoting self-efficacy and empowerment. Using findings from a needs assessment, an Internet-based self-management program, Teens Taking Charge: Managing My Transplant Online, for youth with SOT was developed. This program contains information on transplant, self-management and transition skills, and opportunities for peer support. The purpose of this study was to determine the usability and acceptability of the initial three modules (Medication and Vaccines; Diet after Transplant; and Living with a Transplant Organ) of the online program from the perspectives of youth with SOT. Participants were recruited from SOT clinics at a large pediatric tertiary care center in Canada. Three iterative cycles (seven patients per iteration) of usability testing took place to refine the Web site prototype. Study procedures involved participants finding items from a standardized list of features and talking aloud about issues they encountered, followed by a semi-structured interview to generate feedback about what they liked and disliked about the program. All 21 patients (mean age = 14.9 yr) found the Web site content to be trustworthy, they liked the picture content, and they found the videos of peer experiences to be particularly helpful. Participants had some difficulties finding information within submodules and suggested a more simplistic design with easier navigation. This web-based intervention is appealing to teenagers and may foster improved self-management with their SOT. Nine additional teen and two parent modules are being developed, and the completed Web site will undergo usability testing. In the future, a randomized control trial will determine the feasibility and effectiveness of this online self-management program on adherence, self-efficacy, and transition skills.

A pilot randomized control trial to evaluate the feasibility of an Internet-based self-management and transitional care program for youth with haemophilia.

Adolescents with haemophilia must assume responsibility for their health and management of their disease. An online self-management program was developed to support adolescents during this transition. To determine the feasibility of the program using a randomized control trial (RCT) design in terms of accrual/attrition rates, willingness to be randomized, compliance with the program/outcome measures and satisfaction. Adolescents, ages 13-18, were enrolled in a pilot RCT (NCT01477437) and randomized to either the intervention (8-week program with telephone coaching) or the control arm (no access to the website, weekly telephone call as attention-strategy). All participants completed pre/post-outcome measures. Twenty-nine teens participated (intervention n = 16, control n = 13). Participants in the intervention arm spent an average of 50 min on the website per week and completed the modules in an average of 14 weeks (SD = 4.9). Attrition was higher in the control group compared to the intervention group (54% vs. 25%). 17/18 (94%) who completed the program also completed the poststudy measures. Teens on the intervention arm showed significant improvement in disease-specific knowledge (P = 0.004), self-efficacy (P = 0.007) and transition preparedness (P = 0.046). There was a statistically significant improvement in knowledge in the intervention group when compared to the control group (P = 0.01). Overall, the teens found the website to be informative, comprehensive and easy to use and were satisfied with the program. This pilot RCT study suggests benefit to the program and indicates an RCT design to be feasible with minor adjustments to the protocol.

Disease self-management needs of adolescents with cancer: perspectives of adolescents with cancer and their parents and healthcare providers.

PURPOSE: The ability for adolescents with cancer (AWC) to engage in disease self-management may result in improved cancer outcomes and quality-of-life ratings for this group. Despite this, a comprehensive self-management program for this group is yet to be developed. To ensure that self-management programming developed for AWC meets the needs of this group, discussion with key stakeholders (i.e., AWC, parents, and healthcare providers) is required. METHODS: A descriptive qualitative design was used. Adolescents (n = 29) who varied in age (12 to 18 years) and type of cancer, their parents (n = 30) and their healthcare providers (n = 22) were recruited from one large tertiary-care oncology center. Audio-taped semi-structured individual and focus-group interviews were conducted with participants. Transcribed data were organized into categories that reflected emerging themes. RESULTS: Four major themes, which captured the self-management needs of AWC, emerged from the data. These themes were: (1) disease knowledge and cancer care skills, (2) knowledge and skills to support effective transition to adult healthcare, (3) delivery of AWC-accessible healthcare services, and (4) supports for the adolescent with cancer. CONCLUSIONS: In order to provide comprehensive, relevant, and acceptable self-management programs to AWC, the voices of this population, their parents, and healthcare providers should be considered. Findings from this study will be used to develop and evaluate cancer self-management programming for AWC. IMPLICATIONS FOR CANCER SURVIVORS: Self-management represents an important avenue for exploration into improving cancer outcomes and quality of life for survivors of cancers during adolescence.

Working out the kinks: testing the feasibility of an electronic pain diary for adolescents with arthritis.

BACKGROUND: Current approaches to evaluating pain in children with chronic arthritis suffer from methodological problems. A real-time data capture approach using electronic diaries has been proposed as a new standard for pain measurement. However, there is limited information available regarding the development and feasibility of this approach in children. OBJECTIVES: The aim of the present study was to pilot test the e-Ouch electronic pain diary in terms of compliance and acceptability in adolescents with arthritis to further refine the prototype. METHODS: A descriptive study design -- with two iterative phases of testing, modifying the prototype and retesting -- was used. A purposive sample of 13 adolescents with mild to severe pain and disability was drawn from a large rheumatology clinic in a university-affiliated pediatric tertiary care centre in Canada over a four-week period in December 2004. Participants were signalled with an alarm to use the diary three times per day for a two-week period. Adolescents completed an electronic diary acceptability questionnaire. RESULTS: Overall mean compliance rates for phases 1 and 2 were 72.9% and 70.5%, respectively. Compliance was affected by the timing of data collection and technical difficulties. Children rated the diary as highly acceptable and easy to use. Phase 1 testing revealed aspects of the software program that affected compliance, which were subsequently altered and tested in phase 2. No further technical difficulties arose in phase 2 testing. CONCLUSIONS: Feasibility testing is a crucial first step in the development of electronic pain measures before use in clinical and research practice.