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Transition readiness in pediatric patients with inflammatory bowel disease: patient survey of self-management skills.

ABSTRACT: Transition may be associated with poor health outcomes, but limited data exist regarding inflammatory bowel disease (IBD). Acquisition of self-management skills is believed to be important to this process. IBD-specific checklists of such skills have been developed to aid in transition, but none has been well studied or validated. This study aimed to describe self-assessment ability to perform tasks on one of these checklists and to explore the relation between patient age and disease duration.Patients ages 10 to 21 years with IBD were recruited. An iPad survey queried the patients for self-assessment of ability to perform specific self-management tasks. Task categories included basic knowledge of IBD, doctor visits, medications and other treatments, and disease management. Associations with age and disease duration were tested with Spearman rank correlation.A total of 67 patients (31 boys) with Crohn disease (n?=?40), ulcerative colitis (n?=?25), and indeterminate colitis (n?=?2) participated in the study. Mean patient age was 15.8?±?2.5 years, with median disease duration of 5 years (2 months-14 years). The proportion of patients who self-reported ability to complete a task without help increased with age for most tasks, including "telling others my diagnosis" (??=?0.43, P?=?0.003), "telling medical staff I do not like or am having trouble following a treatment" (??=?0.37, P?=?0.003), and "naming my medications" (??=?0.28, P?=?0.02). No task significantly improved with disease duration.Self-assessment of ability to perform some key tasks of transition appears to improve with age, but not with disease duration. More important, communication with the medical team did not improve with age, despite being of critical importance to functioning within an adult care model.

SUBMITTER: Whitfield EP

PROVIDER: S-EPMC4624208 | biostudies-literature | 2015 Jan

REPOSITORIES: biostudies-literature

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Project description:BackgroundChildhood cancer survivors require lifelong risk-based follow-up care. It should be noted that less than one-third of adult survivors of childhood cancer report any survivor-focused care, and fewer than 1 in 5 obtain risk-based follow-up care. It is thought that this may be due to inadequate transition readiness, including low levels of knowledge, skills, motivation, and resources to make the transition to independent self-management of follow-up care. Interventions that focus specifically on improving the transition from parent-managed to self-managed care are needed. Theory and prior research suggest that targeting self-management skills and using peer mentoring may be innovative strategies to improve transition readiness.ObjectiveThis study aims to identify the content of a self-management intervention to improve transition readiness among adolescent and young adult (AYA) survivors.MethodsIntervention development occurred in 3 stages: formative research with AYA survivors to identify barriers and facilitators to obtaining risk-based survivorship care, content development using feedback from multiple stakeholders (AYA survivors, parents, and providers), and content refinement (usability testing) of the initial proposed educational modules for the program. Content analysis, guided by the social-ecological model of AYA readiness for transition, was used to identify themes and develop and refine the content for the intervention.ResultsA total of 19 AYA survivors participated in the formative research stage, and 10 AYA survivors, parents, and health care providers participated in the content development and refinement stages. The major barrier and facilitator themes identified included knowledge of cancer history and risks; relationships with health care providers; relationships with family members involved in care; emotions about health, follow-up care, and transfer of care; and lifestyle behaviors and life transitions. These themes were translated into 5 self-management modules: understanding treatment history and the survivorship care plan, managing health care logistics and insurance, communicating with health care providers and family members involved in care, dealing with emotions, and staying healthy in the context of life transitions. Feedback from the key stakeholders indicated that the content was relevant but should include participative elements (videos and tailored feedback) to make the intervention more engaging. The AYA survivors were receptive to the idea of working with a peer mentor and expressed a preference for using SMS text messaging, telephone calls, or videoconference to communicate with their mentor.ConclusionsIncorporating AYA survivors, parents, and providers in the design was essential to developing the content of a self-management and peer-mentoring intervention. AYA survivors confirmed the important targets for the intervention and facilitated design decisions in line with our target users' preferences. The next step will be to conduct a single-arm trial to determine the feasibility and acceptability of the proposed intervention among AYA survivors of childhood cancer.

Project description:BACKGROUND:Emerging adulthood is a unique developmental stage, which may affect individuals' self-management behaviors, social support, and the relationship between these two constructs. Among older adults, social support has been shown to improve self-management behaviors for individuals with chronic conditions; however, this relationship has not been examined with emerging adults (age 18-29 years) who have inflammatory bowel disease (IBD). OBJECTIVES:The aim of the study was to examine the relationship between two conceptualizations of social support (received and perceived availability of social support) and IBD-related self-management behaviors among emerging adults with IBD. METHODS:A convenience sample of emerging adult IBD individuals (currently prescribed medication to manage IBD) were recruited through ResearchMatch, Facebook, and word of mouth. The study was guided by key elements of the individual and family self-management theory. Participants responded to demographic and condition-specific questionnaires: the Inventory of Dimensions of Emerging Adulthood, the Inventory of Socially Supportive Behaviors, the Medical Outcomes: Social Support Survey, the Medication Adherence Report Scale, and the Dietary Screener Questionnaire. RESULTS:Emerging adults with high received informational support reported greater medication adherence compared to those with low received informational support when controlling for biological medications, time since diagnosis, symptom frequency, and feeling in-between adolescence and adulthood. Neither type of social support was associated with diet modification. DISCUSSION:Received informational social support, medication type, time since diagnosis, symptoms, and emerging adulthood factors have the potential to influence medication adherence. Received informational social support interventions, such as patient-to-patient or group-based mentoring, may serve to improve medication adherence among emerging adults with IBD.

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Transition readiness in pediatric patients with inflammatory bowel disease: patient survey of self-management skills.

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