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OBJECTIVES: Access to evidence-based self-management support in pediatric inflammatory bowel disease (IBD) is a significant challenge. Digital therapeutic solutions can increase access and provide data to patients and providers that would otherwise not be available. We have iteratively developed a mobile application, Self-Management Assistance with Recommended Treatment (SMART) IBD, that allows patients to access self-management support and record symptoms and medication adherence. METHODS: We conducted a pilot and feasibility study for this digital therapeutic tool in which patients used SMART IBD for 30 days. RESULTS: Results indicated that patients rated the app quality as good and accessed the app adequately overall, with some pages being used often. Medication adherence increased over the course of the study and was associated with sleep duration, mood, and stool consistency and blood content. CONCLUSIONS: Overall, this study demonstrated adequate feasibility for the SMART IBD app and initial findings suggest that additional research is needed to explore the potential impact of this tool in clinical care.
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Estudios de Factibilidad , Enfermedades Inflamatorias del Intestino , Cumplimiento de la Medicación , Aplicaciones Móviles , Automanejo , Humanos , Proyectos Piloto , Automanejo/métodos , Niño , Femenino , Masculino , Adolescente , Enfermedades Inflamatorias del Intestino/terapiaRESUMEN
The objective of this study was to design, code, and test the feasibility, acceptability, and preliminary efficacy of a digital therapeutic self-management tool for pediatric inflammatory bowel disease (IBD). The Self-Management Assistance for Recommended Treatment (SMART) portal development involved an iterative co-design process with a series of focus group/interview sessions with key stakeholders. Subsequently, a pilot, single-arm, open-label trial was conducted with 22 patients; medication adherence was the primary outcome. Usage data for the SMART portal were good, with patients demonstrating better engagement than parents. Results from the trial demonstrated improvement in medication adherence ( M = 24%-31%; t = 7.94, P < 0.05) and self-management barriers as well as trends in health-related quality of life and symptoms. The SMART portal is a feasible digital therapeutic self-management tool for pediatric IBD that demonstrated preliminary efficacy in this pilot trial. Large, controlled trials are needed to definitively determine the clinical efficacy of this tool.
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Enfermedades Inflamatorias del Intestino , Automanejo , Humanos , Adolescente , Niño , Calidad de Vida , Enfermedades Inflamatorias del Intestino/tratamiento farmacológico , Cumplimiento de la Medicación , Resultado del Tratamiento , Estudios de FactibilidadRESUMEN
BACKGROUND: Inclusion of evidence-based behavior change techniques (e.g., self-monitoring) in mobile health apps has the potential to promote adherence to inflammatory bowel disease treatment. While inflammatory bowel disease management apps exist, the extent to which they incorporate behavior change techniques remains unknown. AIMS: The present study systematically evaluated the content and quality of free, commercially available inflammatory bowel disease management apps. METHODS: Apps were identified using a systematic search of the Apple App and Google Play stores. Apps were evaluated using Abraham and Michie's taxonomy of 26 behavior change techniques. A literature search was conducted to identify behavior change techniques specific and relevant for people with inflammatory bowel disease. App quality was assessed using the Mobile App Rating Scale with scores ranging from 1 (Inadequate) to 5 (Excellent). RESULTS: A total of 51 inflammatory bowel disease management apps were evaluated. Apps included 0-16 behavior change techniques (Mean = 4.55) and 0-10 inflammatory bowel disease management behavior change techniques (Mean = 3.43). App quality ranged from 2.03 to 4.62 (Mean = 3.39) out of 5.00. Two apps, My IBD Care: Crohn's & Colitis and MyGiHealth GI Symptom Tracker, included the highest number of overall and inflammatory bowel disease management behavior change techniques along with high-quality scores. Bezzy IBD was the only app with a high number of overall and inflammatory bowel disease management behavior change techniques with a primary focus on social support/change. CONCLUSION: Most inflammatory bowel disease management apps reviewed included evidence-based inflammatory bowel disease management behavior change techniques.
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Enfermedad de Crohn , Enfermedades Inflamatorias del Intestino , Aplicaciones Móviles , Telemedicina , Humanos , Terapia Conductista/métodos , Enfermedades Inflamatorias del Intestino/terapiaRESUMEN
To examine the feasibility, acceptability, and preliminary efficacy of a technology-assisted stepped-care behavioral intervention to improve adherence in adolescents with asthma. Thirty adolescents (Mage = 14.66, 53% male) with moderate to severe-persistent asthma completed daily adherence monitoring and medication reminders via a mobile app (Step 1). Participants with < 68% adherence during Step 1 received a telehealth behavioral intervention (Step 2). Twenty-six of 30 participants (87%) completed Step 1. Step 2 was indicated for 18 participants and was completed by 17. Participants favorably rated their experience in the study. Improvements in adherence (40-58%, p = .048) and decreases in asthma composite severity scores (CASI 6.08-5.08, p = .023) were observed for the full sample. Technology-assisted stepped-care is feasible and acceptable. Participants demonstrated improved adherence and asthma composite severity scores once they received the appropriate step of the intervention. Future studies should include a control group, a longer time-frame and an intermediate intervention step.
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Asma , Aplicaciones Móviles , Humanos , Masculino , Adolescente , Femenino , Proyectos Piloto , Cumplimiento de la Medicación , Asma/terapia , Terapia ConductistaRESUMEN
BACKGROUND: Mobile health apps have the potential to promote adherence to headache management through the use of evidence-based behavior change techniques (e.g., self-monitoring). While many headache management apps exist, the extent to which these apps include behavior change techniques remains unknown. Thus, the present study systematically evaluated the content and quality of commercially available headache management apps. METHODS: Headache apps were identified using a systematic search in the Apple App and Google Play stores. A total of 55 apps were evaluated using the taxonomy of behavior change techniques and app quality using the Mobile App Rating Scale. RESULTS: Headache management apps included 0-14 behavior change techniques (Mean [M] = 5.89) and 0-8 headache management behavior change techniques (M = 4.29). App quality ranged from 2.84-4.67 (M = 3.73) out of 5.00. Three apps, Migraine Trainer, Easeday: Headache & Migraine, and PainScale, included the highest number of overall and headache management behavior change techniques along with good quality scores. CONCLUSIONS: While randomized controlled trials are necessary to determine the efficacy of individual headache apps, most existing apps include evidence-based headache management behavior change techniques. Headache apps often focus on either self-monitoring or stress management via relaxation training, suggesting that patients' needs should be used to inform app selection.
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Trastornos Migrañosos , Aplicaciones Móviles , Telemedicina , Terapia Conductista/métodos , Cefalea/terapia , HumanosRESUMEN
BACKGROUND: Asthma is heterogeneous, contributing to difficulty in disease management. OBJECTIVE: To develop a biomarker-informed treatment model for difficult-to-treat (DTT) asthma and conduct a pilot feasibility study. METHODS: School-aged children (n = 21) with DTT asthma were enrolled and completed 3 medical visits (V1-V3). V2 and V3 were completed approximately 3.5 months and 12 months after V1, respectively. At V1, guideline care and adherence interventions were initiated, and blood samples were collected for asthma biomarker assessment. A personalized treatment algorithm was developed based on biomarkers (treatment by endotype) and was implemented at V2. Asthma outcomes were compared from V1 to V2 (guideline-based care) to V2 to V3 (guideline + biomarker-informed care). RESULTS: Overall retention was 86%. There was an even distribution of participants with allergy, without allergy, and with mixed allergies. The participants received an average of 5.9 interventions (range, 3-9). The allergic phenotype was characterized by increased CDHR3 risk genotype and high transepidermal water loss. High serum interleukin-6 level was most notable in the mixed allergic subgroup. The nonallergic phenotype was characterized by vitamin D deficiency and poor steroid treatment responsiveness. The personalized treatment plans were associated with decreased emergency department visits (median, 1 vs 0; P = .04) and increased asthma control test scores (median, 22.5 vs 23.0; P = .01). CONCLUSION: The biomarker-based treatment algorithm triggered interventions on top of guideline care in all children with DTT asthma studied, supporting the need for this type of multipronged approach. Our findings identify the minimal biomarker set that is informative, reveal that this treatment-by-endotype intervention is feasible and may be superior to guideline care alone, and provide a strong foundation for a definitive trial. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT04179461.
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Asma , Hipersensibilidad , Asma/diagnóstico , Asma/terapia , Biomarcadores , Proteínas Relacionadas con las Cadherinas , Cadherinas , Niño , Servicio de Urgencia en Hospital , Humanos , Proteínas de la Membrana , FenotipoRESUMEN
OBJECTIVE: This article systematically reviews the empirical literature examining the efficacy of digital headache management interventions for patients with a primary headache disorder. BACKGROUND: Digital headache management interventions provide opportunities to improve access to behavioral headache interventions to underserved groups. METHODS: A systematic search of PubMed, Scopus, and EBSCO (PsycInfo, Education Research Complete, ERIC, Health Source: Nursing/Academic Edition, Psychology and Behavioral Sciences Collection) and reference review was conducted. Included studies had to recruit a sample with a primary headache diagnosis, be a randomized controlled trial including a digital component, assess a headache outcome (i.e., frequency, duration, severity, intensity, disability) or quality of life, and be published in English. Two authors independently extracted data for included studies. The methodological quality of studies was assessed using the revised Cochrane risk-of-bias tool. RESULTS: Thirteen studies with unique interventions met inclusion criteria. More than half of the studies were pilots; however, nearly 70% (9/13) demonstrated significant between-group or within-group improvements on one or more headache-related outcomes. All interventions included some form of relaxation training and the majority were delivered via interactive website. While fewer than half the studies report participant race and/or ethnicity, of those that do, 83% (5/6) reported a predominately White/Caucasian sample. CONCLUSIONS: Efficacy testing of digital headache interventions is in its infancy with the majority of these studies relying on pilot studies with small samples comprised of homogenous patient populations. Interactive websites were the most common digital medium to deliver digital headache management interventions and have demonstrated promising results. Further testing using large-scale randomized controlled trials and exploration of other digital tools is warranted. Future studies with more diverse samples are needed to inform health equity of digital headache interventions.
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Cefaleas Primarias , Automanejo , Humanos , Calidad de Vida , Ensayos Clínicos Controlados Aleatorios como Asunto , Cefalea/psicología , Cefaleas Primarias/terapiaRESUMEN
OBJECTIVE: Transition to adult IBD care continues to be a challenge. Efficacious models of improving transition to adult care in the United States are lacking. We present data from a pilot, prospective, non-randomized, intervention implemented at IBD centers in the Midwest and Southeast United States. DESIGN AND METHODS: Adolescents and young adults (AYAs; 16-20 years) with IBD and their parents completed a 4- to 5-month transition program (1 in-person group session; 4 individual telehealth sessions). Primary outcomes were feasibility (i.e., recruitment, retention, fidelity) and acceptability (i.e., program satisfaction). Secondary outcomes were changes in transition readiness, self-management skill acquisition, perceived readiness to transfer to adult care, and disease knowledge. RESULTS: The study exceeded goals for recruitment (target N = 20; actual: 36) and retention (target: 80%; actual: 86.11%). On average, it took participants 20.91 ± 3.15 weeks to complete our 4- to 5-month intervention and there were no deviations from the study protocol. Participant ratings for overall program satisfaction, perceived helpfulness, and program length and format were positive. Increases in transition readiness, t(30) = 8.30, d = 1.49, p < .001, self-management skill acquisition, t(30) = 3.93, d = 0.70, p < .001, and disease knowledge, t(30) = 8.20, d = 1.58, p < .001 were noted. AYA- and parent-perceived transfer readiness also improved (p's < .05; d's = 0.76-1.68). CONCLUSIONS: This article presents feasibility and acceptability data for a 4- to 5-month transition intervention. Improvements in AYA transition readiness, self-management skill acquisition, IBD knowledge, and AYA/parent perceived transfer readiness were also observed.
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Enfermedades Inflamatorias del Intestino , Telemedicina , Transición a la Atención de Adultos , Adolescente , Humanos , Enfermedades Inflamatorias del Intestino/terapia , Estudios Prospectivos , Sudeste de Estados Unidos , Adulto JovenRESUMEN
BACKGROUND: Lack of evidence-based outcomes data leads to uncertainty in developing treatment regimens in children who are newly diagnosed with ulcerative colitis. We hypothesised that pretreatment clinical, transcriptomic, and microbial factors predict disease course. METHODS: In this inception cohort study, we recruited paediatric patients aged 4-17 years with newly diagnosed ulcerative colitis from 29 centres in the USA and Canada. Patients initially received standardised mesalazine or corticosteroids, with pre-established criteria for escalation to immunomodulators (ie, thiopurines) or anti-tumor necrosis factor-α (TNFα) therapy. We used RNA sequencing to define rectal gene expression before treatment, and 16S sequencing to characterise rectal and faecal microbiota. The primary outcome was week 52 corticosteroid-free remission with no therapy beyond mesalazine. We assessed factors associated with the primary outcome using logistic regression models of the per-protocol population. This study is registered with ClinicalTrials.gov, number NCT01536535. FINDINGS: Between July 10, 2012, and April 21, 2015, of 467 patients recruited, 428 started medical therapy, of whom 400 (93%) were evaluable at 52 weeks and 386 (90%) completed the study period with no protocol violations. 150 (38%) of 400 participants achieved week 52 corticosteroid-free remission, of whom 147 (98%) were taking mesalazine and three (2%) were taking no medication. 74 (19%) of 400 were escalated to immunomodulators alone, 123 (31%) anti-TNFα therapy, and 25 (6%) colectomy. Low baseline clinical severity, high baseline haemoglobin, and week 4 clinical remission were associated with achieving week 52 corticosteroid-free remission (n=386, logistic model area under the curve [AUC] 0·70, 95% CI 0·65-0·75; specificity 77%, 95% CI 71-82). Baseline severity and remission by week 4 were validated in an independent cohort of 274 paediatric patients with newly diagnosed ulcerative colitis. After adjusting for clinical predictors, an antimicrobial peptide gene signature (odds ratio [OR] 0·57, 95% CI 0·39-0·81; p=0·002) and abundance of Ruminococcaceae (OR 1·43, 1·02-2·00; p=0·04), and Sutterella (OR 0·81, 0·65-1·00; p=0·05) were independently associated with week 52 corticosteroid-free remission. INTERPRETATION: Our findings support the utility of initial clinical activity and treatment response by 4 weeks to predict week 52 corticosteroid-free remission with mesalazine alone in children who are newly diagnosed with ulcerative colitis. The development of personalised clinical and biological signatures holds the promise of informing ulcerative colitis therapeutic decisions. FUNDING: US National Institutes of Health.
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Corticoesteroides/uso terapéutico , Antiinflamatorios no Esteroideos/uso terapéutico , Colitis Ulcerosa/tratamiento farmacológico , Mesalamina/uso terapéutico , Adolescente , Biomarcadores/metabolismo , Niño , Preescolar , Estudios de Cohortes , Femenino , Hospitalización/estadística & datos numéricos , Humanos , Masculino , Resultado del TratamientoRESUMEN
OBJECTIVE: The objective of this study was to design, code, and pilot test the feasibility and preliminary efficacy of a self-management digital therapeutic tool for adolescents with migraine. BACKGROUND: Self-management of migraine in adolescents is complex and has important implications for health outcomes. A comprehensive and accessible approach to self-management is needed for youth with migraine, their parents, and clinicians. METHODS: An iterative co-design process was used to develop and optimize the Migraine Manager's digital therapeutic self-management tool. Subsequently, 40 adolescents, age 11-18 years, were enrolled in an 8-week single-arm open label trial (N = 36 analyzed). The primary outcome was headache days. RESULTS: Usage data for Migraine Manager were similar to other health app usage data and feedback from participants was uniformly positive, indicating acceptable feasibility. Preliminary efficacy was demonstrated by a reduction in headache days from 17.2 ± 8.5 at baseline to 7.9 ± 7.2 at 8 weeks (95% CI, -13.0 to -7.8; P < .001). There was also statistically significant improvement in patient physical functioning quality of life reported by both patients (baseline = 55.7 ± 20.4; 8 weeks = 69.7 ± 21.9, P = .005) and parents (baseline = 58.5 ± 22.8; 8 weeks = 74.3 ± 18.1, P = .002), and in parent-reported ingestion issues subscale of the adherence barriers scale from baseline to 8 weeks (baseline = 6.0 ± 2.6; 8 weeks = 5.2 ± 3.0, P = .020). CONCLUSIONS: A self-management digital therapeutic tool for adolescents with migraine can offer care to patients who might not otherwise receive such services. Migraine Manager demonstrated the feasibility and preliminary efficacy in this pilot trial, highlighting the potential beneficial impact of this tool. Larger controlled trials with long-term follow-up are needed to definitively determine the clinical efficacy of Migraine Manager.
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Intervención basada en la Internet , Trastornos Migrañosos/terapia , Evaluación de Procesos y Resultados en Atención de Salud , Automanejo , Adolescente , Niño , Estudios de Factibilidad , Femenino , Humanos , Masculino , Padres , Cooperación del Paciente , Proyectos PilotoRESUMEN
Measuring medication adherence in pediatric inflammatory bowel diseases (IBD) is challenging because of complexities in personalized treatment regimens and increased use of biologic mono- and combination therapy. Objective measurement of adherence via electronic monitoring is the gold standard; however, it is not useful for daily monitoring when multiple medication formulations (eg, pills, injections, infusions) as well as vitamins/supplements are prescribed. Although validated subjective measures are available, they are not designed for daily use and do not capture day-to-day variation in adherence. In the following article, a new approach to measuring adherence regardless of a patient's specific medication regimen is presented. Utilizing a micro-longitudinal design, 30 days of daily self-reported medication adherence data was collected from youth with IBD via text message. Results reflect mean adherence rates from studies utilizing pill counts and electronic monitoring, suggesting promise for the use of self-reported daily diaries to assess medication adherence in pediatric IBD.
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Enfermedades Inflamatorias del Intestino , Cumplimiento de la Medicación , Adolescente , Niño , Suplementos Dietéticos , Humanos , Enfermedades Inflamatorias del Intestino/tratamiento farmacológico , AutoinformeRESUMEN
OBJECTIVE: Treatment adherence is approximately 50% across pediatric conditions. Patient-reported outcomes (PROs) are the most common method of measuring adherence and self-management across research and clinical contexts. The aim of this systematic review is to evaluate adherence and self-management PROs, including measures of adherence behaviors, adherence barriers, disease management skills, and treatment responsibility. METHODS: Following PRISMA guidelines for systematic reviews, literature searches were performed. Measures meeting inclusion/exclusion criteria were evaluated using Hunsley and Mash's (2018) criteria for evidence-based assessment across several domains (e.g., internal consistency, interrater reliability, test-retest reliability, content validity, construct validity, validity generalization, treatment sensitivity, and clinical utility). Rating categories were adapted for the present study to include the original categories of adequate, good, and excellent, as well as an additional category of below adequate. RESULTS: After screening 172 articles, 50 PROs across a variety of pediatric conditions were reviewed and evaluated. Most measures demonstrated at least adequate content validity (n = 44), internal consistency (n = 34), and validity generalization (n = 45). Findings were mixed regarding interrater reliability, test-retest reliability, and treatment sensitivity. Less than half of the measures (n = 22) exhibited adequate, good, or excellent construct validity. CONCLUSIONS: Although use of adherence and self-management PROs is widespread across several pediatric conditions, few PROs achieved good or excellent ratings based on rigorous psychometric standards. Validation and replication studies with larger, more diverse samples are needed. Future research should consider the use of emerging technologies to enhance the feasibility of broad implementation.
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Medición de Resultados Informados por el Paciente , Automanejo , Cumplimiento y Adherencia al Tratamiento , Adolescente , Adulto , Niño , Preescolar , Humanos , Psicometría/métodos , Reproducibilidad de los Resultados , Adulto JovenRESUMEN
The COVID-19 pandemic has presented unique circumstances that have the potential to both positively and negatively affect pediatric adherence and self-management in youth with chronic medical conditions. The following paper discusses how these circumstances (e.g., stay-at-home orders, school closures, changes in pediatric healthcare delivery) impact disease management at the individual, family, community, and healthcare system levels. We also discuss how barriers to pediatric adherence and self-management exacerbated by the pandemic may disproportionately affect underserved and vulnerable populations, potentially resulting in greater health disparities. Given the potential for widespread challenges to pediatric disease management during the pandemic, ongoing monitoring and promotion of adherence and self-management is critical. Technology offers several opportunities for this via telemedicine, electronic monitoring, and mobile apps. Moreover, pediatric psychologists are uniquely equipped to develop and implement adherence-promotion efforts to support youth and their families in achieving and sustaining optimal disease management as the current public health situation continues to evolve. Research efforts addressing the short- and long-term impact of the pandemic on pediatric adherence and self-management are needed to identify both risk and resilience factors affecting disease management and subsequent health outcomes during this unprecedented time.
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Betacoronavirus , Enfermedad Crónica/terapia , Infecciones por Coronavirus/prevención & control , Pandemias/prevención & control , Cooperación del Paciente/estadística & datos numéricos , Neumonía Viral/prevención & control , Automanejo/estadística & datos numéricos , Telemedicina/métodos , Adolescente , COVID-19 , Niño , Enfermedad Crónica/psicología , Infecciones por Coronavirus/psicología , Humanos , Aplicaciones Móviles , Neumonía Viral/psicología , SARS-CoV-2 , Automanejo/métodosRESUMEN
OBJECTIVE: Youth with inflammatory bowel disease (IBD) often experience difficulties communicating about their disease. It is suspected that the stigmatizing nature of IBD symptoms contributes to youths' health communication difficulties, leaving youth feeling disconnected from their social environment and potentially resulting in decreased social belongingness and poorer emotional functioning. In this study, we tested an illness stigma â health communication difficulties â thwarted belongingness â depressive symptoms serial mediation model. It was anticipated that youth illness stigma would confer a serial indirect effect on youth depressive symptoms through the sequential effects of stigma on health communication difficulties and thwarted social belongingness. METHODS: Seventy-five youth with IBD between the ages of 10 and 18 completed measures of perceived illness stigma, health communication difficulties, thwarted belongingness, and depressive symptoms. RESULTS: Results indicated a significant illness stigma â thwarted belongingness â depressive symptoms simple mediation path. Importantly, findings also revealed a significant serial mediation path for illness stigma â health communication difficulties â thwarted belongingness â depressive symptoms. CONCLUSIONS: Youth who perceive greater IBD stigma appear to experience increased difficulty communicating about their IBD with others, which in turn is associated with feelings of thwarted social belongingness and ultimately elevated depressive symptoms. These findings suggest that difficulty communicating about IBD is one potential route by which illness stigma has a negative impact on youth adjustment outcomes. Results could also inform clinical interventions to address IBD stigma and health communication difficulties associated with the social and emotional challenges in youth with IBD.
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Depresión/psicología , Enfermedades Inflamatorias del Intestino/psicología , Estigma Social , Adolescente , Niño , Comunicación , Emociones/fisiología , Femenino , Humanos , Relaciones Interpersonales , Masculino , Ideación SuicidaRESUMEN
Perceived illness stigma is associated with increased depressive symptoms in youth with inflammatory bowel disease (IBD), but the mechanisms by which stigma influences emotional adjustment remain unclear. It is possible that youth with IBD who are more present-focused and better able to come to terms with aspects of their disease that are less controllable (i.e. are mindful) may develop more adaptive strategies when facing illness uncertainty, resulting in more positive emotional adjustment. The present study examined the indirect association between illness stigma, illness uncertainty, depressive symptoms, and the potential moderating effect of mindfulness on this process. One hundred and seven youth (56 female, 51 male; Mage = 14.73) with IBD completed measures of illness stigma (SS-C), illness uncertainty (CUIS), depressive symptoms (CDI-2), and trait mindfulness (MAAS-A). Analyses revealed a significant SS-C â CUIS â CDI-2 indirect path (ß = .686, 95% CI = .1346 to 1.489), which was moderated by MAAS-A (ß = -.445, 95% CI = -.972 to -.083). Results indicate that the SS-C â CUIS â CDI-2 indirect path was significant at low, but not medium or high, levels of MAAS-A. Illness uncertainty appears to be a potential route through which stigma impacts emotional adjustment in youth with IBD, particularly for youth characterized by low mindfulness. Clinical interventions that emphasize mindfulness training along with acknowledgement/acceptance of IBD illness factors may help diminish the negative effects of stigma and illness uncertainty on adjustment in this population.
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Depresión/psicología , Conocimientos, Actitudes y Práctica en Salud , Enfermedades Inflamatorias del Intestino/psicología , Atención Plena , Estigma Social , Adolescente , Femenino , Humanos , Masculino , IncertidumbreRESUMEN
OBJECTIVES: Among adolescents with inflammatory bowel disease (IBD), nonadherence rates are 50 to 88% across medications. Improving education in adults with IBD has been shown to improve coping and adherence to treatment in adults with IBD. Therapeutic patient education (TPE) has been used in patients with chronic diseases to train patients in skills to support treatment adaptation and condition management. This study tested the feasibility and preliminary efficacy of a novel TPE intervention in adolescents with IBD. METHODS: In this pilot, mixed-methods study, we evaluated the feasibility and preliminary efficacy of TPE with the IBD Pocket Guide on medication adherence, IBD knowledge, and transition readiness in adolescents ages 11 to 18 years. Medication adherence was monitored using a MedMinder Pill Dispensing system. Participants who were <90% adherent during a 4-week pre-intervention monitoring period were randomized to either a usual care group or an educational intervention (EI) group. Participants were followed for an additional 4 weeks after intervention. RESULTS: Trends were found in the EI group indicating improved medication adherence and IBD knowledge compared with the usual care group, though differences between groups did not reach statistical significance. Qualitative data showed that participants perceived that they had improved knowledge after the educational intervention. CONCLUSIONS: Therapeutic patient education may be beneficial for improving patient medication adherence and IBD knowledge. Future directions include testing the effects of the intervention with a larger sample.
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Adaptación Psicológica , Enfermedades Inflamatorias del Intestino/psicología , Cumplimiento de la Medicación , Educación del Paciente como Asunto , Adolescente , Servicios de Salud del Adolescente , Niño , Estudios de Factibilidad , Femenino , Humanos , Masculino , Ohio , Proyectos Piloto , Encuestas y CuestionariosRESUMEN
Objective: To examine the health technology uses and preferences of adolescents with asthma using a qualitative descriptive individual interview approach. Methods: Twenty adolescents were recruited from regularly scheduled asthma clinic appointments from February to July 2016. Patients were interviewed about their technology use and ways in which health technology could improve their asthma management using an open-ended semi-structured interview format. Interviews were audio recorded, transcribed, and coded into themes. Results: Social media (e.g. Snapchat, Instagram) and general communication (e.g. messaging) were the most common uses of technology while medical reminders (e.g. appointment, refill, medication) were the most common use of health technology. Adolescents identified ways in which health technology could improve their asthma management including (1) tracking symptoms and medication, (2) medical reminders, and (3) asthma and self-management knowledge specifically related to medications and individual action plans. Other themes that emerged included a desire to customize health technology to fit with individual schedules and medical routines and use of health technology data with medical providers. Conclusions: Adolescents and parents experience a number of challenges related to managing asthma, and health technology interventions should focus on ways to improve adherence and self-management. Future research considerations and potential interventions including ways to integrate adolescent preferences with evidence-based interventions are discussed.
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Conducta del Adolescente , Asma/terapia , Tecnología Biomédica/estadística & datos numéricos , Prioridad del Paciente , Automanejo/métodos , Adolescente , Asma/psicología , Femenino , Conocimientos, Actitudes y Práctica en Salud , Humanos , Masculino , Cooperación del Paciente/psicología , Investigación Cualitativa , Automanejo/estadística & datos numéricos , Medios de Comunicación Sociales/estadística & datos numéricos , Encuestas y Cuestionarios/estadística & datos numéricos , Envío de Mensajes de Texto/estadística & datos numéricosRESUMEN
OBJECTIVE: The objective of this study was to systematically evaluate commercially available medication adherence apps for the inclusion of behavior change techniques (BCTs) and to conduct a usability analysis on a subset of apps with adolescents and young adults living with a chronic illness. METHODS: Medication adherence apps were identified via a search of iTunes app store in August 2016. Seventy-five apps meeting initial inclusion criteria were independently coded by two researchers for the presence/absence of 26 BCTs. Twenty adolescents and young adults (ages: 13-20 years) with inflammatory bowel disease conducted usability testing on a subset of apps (n = 4). RESULTS: Across 75 apps coded for presence/absence of 26 BCTs, only 7 unique BCTs were identified. The number of BCTs per app ranged from 2 to 6, with an average of 3.3 BCTs. In usability testing, quality ratings varied across apps. Medisafe received the highest average scores on engagement, functionality, aesthetics, and information subscales. Medisafe and MyTherapy ranked first and second, respectively, on overall quality and perceived impact ratings. CONCLUSION: Content evaluation revealed only a limited number of BCTs that have been translated to medication adherence apps. Among apps with comparable content, clear user preferences emerged based on perceived quality and usability. Greater collaboration is needed between psychologists and health technologists to incorporate more evidence-based BCTs in apps. Findings also indicate a need for app developers to consider and incorporate the preferences of younger end users to improve app quality and engagement for pediatric populations.
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Conductas Relacionadas con la Salud , Cumplimiento de la Medicación , Aplicaciones Móviles/normas , Prioridad del Paciente , Pediatría/métodos , Adolescente , Adulto , Femenino , Humanos , Enfermedades Inflamatorias del Intestino/tratamiento farmacológico , Masculino , Adulto JovenRESUMEN
PURPOSE: The purpose of this study was to examine patterns of adherence to a novel dietary supplement in pediatric cystic fibrosis. Adherence to dietary supplementation in cystic fibrosis is challenging, and examination of patterns of adherence behavior over time is needed to better characterize subgroups of patients who need self-management support. DESIGN AND METHODS: We prospectively examined adherence to Lym-X-Sorb™ (LXS), an organized lipid matrix dietary supplementation for patients with cystic fibrosis (CF) and pancreatic insufficiency (PI), over a 12-month period. Adherence for participants aged 5-17â¯years with CF and PI (Nâ¯=â¯109) was monitored monthly via supplement packet counts. Group-based trajectory modeling was employed to examine patterns in adherence behavior over time. RESULTS: Four distinct trajectories best characterized adherence in this sample, with 18% of participants demonstrating near perfect adherence, 42% demonstrating good adherence (at or above 80%), 16% demonstrating poor adherence that declined over time, and 24% demonstrating significant non-adherence (< 30%). CONCLUSIONS: Some patients with CF and PI who are prescribed nutritional supplements will require intensive, individualized behavioral intervention to enhance adherence. Identifying patients who will have difficulty adhering to dietary interventions may result in better treatment-to-patient matching and improved adherence promotion efforts. PRACTICE IMPLICATIONS: Assessment of adherence to dietary supplementation over time can identify patients at risk for continued difficulty with self-management and provide opportunities for early intervention.
Asunto(s)
Fibrosis Quística/dietoterapia , Suplementos Dietéticos , Insuficiencia Pancreática Exocrina/dietoterapia , Cooperación del Paciente , Adolescente , Niño , Preescolar , Femenino , Humanos , Masculino , Estudios ProspectivosRESUMEN
BACKGROUND: Effective management of migraine requires adherence to treatment recommendations; however, adolescents with migraine take their daily medications only 75% of the time. Low-cost adherence-focused interventions using technology may improve adherence, but have not been investigated. METHODS: Thirty-five adolescents and young adults (13-21 years) with migraine participated in an AB-design pilot study to assess the use of a mobile phone adherence-promotion application ("app") and progressive reminder system. Adherence was calculated using electronic monitoring during the baseline period and medication adherence intervention. RESULTS: Relative to baseline, adherence significantly improved during the first month of the intervention. Specifically, improvements existed for older participants with lower baseline adherence. Self-reported app-based adherence rates were significantly lower than electronically monitored adherence rates. Participants rated the intervention as acceptable and easy to use. CONCLUSIONS: "Apps" have the potential to improve medication adherence and are a promising intervention for adolescents and young adults with low adherence. Involving parents in the intervention is also helpful. Providers should assess barriers to adherence and use of technology-based interventions, encourage parents to incorporate behavioral incentives, and provide referrals for more intensive interventions to improve long-term outcomes. Further, tracking adherence in an app may result in an underestimation of adherence. Future full-scale studies should be conducted to examine adherence promotion app interventions.