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ABSTRACT: As part of the development of the TUMMY-UC, a patient-reported outcome (PRO) measure for pediatric ulcerative colitis (UC), we aimed to explore agreement on UC symptoms between children and their caregivers. We conducted 44 interviews with children ages 8-12âyears, who completed the PRO version of the TUMMY-UC, and their caregivers, who completed the observer-reported outcome (obsRO) version. There was excellent agreement between the total TUMMY-UC PRO and obsRO scores (intra-class correlation coefficientâ=â0.92 [95% confidence interval 0.74-0.98]). The obsRO scores were always within the same disease-activity category as the corresponding PRO score (ie, remission, mild and moderate-severe disease). There was a strong correlation of the TUMMY-UC PRO and obsRO scores with physician global assessment of disease activity (râ=â0.94 and râ=â0.90, respectively, Pâ<â0.001) and the pediatric UC activity index (râ=â0.95 and râ=â0.96; Pâ<â0.001). These data support conceptual equivalence between the PRO and obsRO TUMMY-UC versions, and provide support for their incorporation into one score.
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Colite Ulcerativa , Médicos , Cuidadores , Criança , Colite Ulcerativa/diagnóstico , Colite Ulcerativa/terapia , Humanos , Medidas de Resultados Relatados pelo Paciente , Índice de Gravidade de DoençaRESUMO
Cognitive behavioral therapy (CBT) and selective serotonin reuptake inhibitors are effective treatments for pediatric anxiety disorders. However, the mechanisms of these treatments are unknown. Previous research indicated that somatic symptoms are reduced following treatment, but it is unclear if their reductions are merely a consequence of treatment gains. This study examined reductions in somatic symptoms as a potential mediator of the relationship between treatment and anxiety outcomes. Participants were 488 anxious youth ages 7-17 (M = 10.7), 50.4% male, 78.9% Caucasian, enrolled in Child/Adolescent Anxiety Multimodal Study, a large randomized control trial comparing 12-week treatments of CBT, sertraline, a combination of CBT and sertraline, and a pill placebo. Causal mediation models were tested in R using data from baseline, 8-, and 12-week evaluations. Somatic symptoms were assessed using the Panic/Somatic subscale from the Screen for Child Anxiety Related Emotional Disorders. Youth outcomes were assessed using the Pediatric Anxiety Rating Scale and Children's Global Assessment Scale. Reductions in somatic symptoms mediated improvement in anxiety symptoms and global functioning for those in the sertraline-only condition based on parent report. Conditions involving CBT and data based on child reported somatic symptoms did not show a mediation effect. Findings indicate that reductions in somatic symptoms may be a mediator of improvements for treatments including pharmacotherapy and not CBT. Although the overall efficacy of sertraline and CBT for anxiety may be similar, the treatments appear to function via different mechanisms.
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Transtornos de Ansiedade/tratamento farmacológico , Terapia Combinada/métodos , Sintomas Inexplicáveis , Adolescente , Transtornos de Ansiedade/psicologia , Criança , Feminino , Humanos , Masculino , Resultado do TratamentoRESUMO
BACKGROUND: Increased spiritual well-being is related to quality of life (QOL) in patients with heart failure (HF). However, consistent and deliberate integration of spirituality into HF patient care has received limited attention. OBJECTIVE: The aim of this study was to evaluate the feasibility, acceptability, and preliminary evidence regarding the efficacy of a resource-sparing psychospiritual intervention to improve QOL in HF patients. METHODS: A 12-week mail-based intervention addressing spirituality, stress, coping, and adjusting to illness was developed and tested using a mixed-methods, 1-group pretest-posttest pilot study design. A convenience sample of patients with HF completed prestudy and poststudy questionnaires, including the Kansas City Cardiomyopathy Questionnaire, Patient Health Questionnaire, Meaning in Life Questionnaire, and Functional Assessment of Chronic Illness Therapy-Spiritual. Research staff conducted semistructured interviews with program completers. Interviews were coded and analyzed using conventional content analysis. RESULTS: Participants (N = 33; 82% male; mean age, 61 years) completed 87% of baseline data collection, an average of 9 intervention modules, and 55% of poststudy questionnaires. Participants rated all the modules as at least moderately helpful, and qualitative themes suggested that patients found the intervention acceptable and beneficial. Most participants believed spirituality should continue to be included, although they disagreed on the extent to which religion should remain. Participants who completed the intervention reported evidence suggesting increased QOL (Kansas City Cardiomyopathy Questionnaire; effect size [ES], 0.53), decreased depressive symptoms (Patient Health Questionnaire-9; ES, 0.62), and less searching for meaning (Meaning in Life Questionnaire; ES, 0.52). CONCLUSIONS: Results indicate that a module-based program integrating spirituality and psychosocial coping strategies was feasible and acceptable and may improve QOL. This preliminary study suggests that clinicians be open to issues of spirituality as they may relate to QOL in patients with HF. Future research will test a revised intervention.
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Insuficiência Cardíaca/terapia , Psicoterapia , Terapias Espirituais , Idoso , Estudos de Viabilidade , Feminino , Insuficiência Cardíaca/psicologia , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Projetos Piloto , Estudos Prospectivos , Qualidade de Vida , Inquéritos e Questionários , Resultado do TratamentoRESUMO
PURPOSE: Scientific advances in treatments and outcomes for those diagnosed with cancer in late adolescence and early adulthood depend, in part, on the availability of adequate assessment tools to measure health-related quality of life (HRQOL) for survivors in this age group. Domains especially relevant to late adolescence and young adulthood (LAYA; e.g., education and career, committed romantic relationships, worldview formation) are typically overlooked in studies assessing the impact of cancer, usually more appropriate for middle-aged or older survivors. Current HRQOL measures also tend to assess issues that are salient during or shortly after treatment rather than reflecting life years after treatment. METHODS: To develop a new measure to better capture the experience of LAYA cancer survivors in longer-term survivorship (the LAYA Survivorship-Related Quality of Life measure, LAYA-SRQL), we completed an extensive measure development process. After a literature review and focus groups with LAYA cancer survivors, we generated items and ran confirmatory factor and reliability analyses using a sample of 292 LAYA cancer survivors. We then examined validity using existing measures of physical and mental health, quality of life, and impact of cancer. RESULTS: The final model consisted of two domains (satisfaction and impact), each consisting of ten factors: existential/spirituality, coping, relationship, dependence, vitality, health care, education/career, fertility, intimacy/sexuality, and cognition/memory. Confirmatory factor analysis and validity analyses indicated that the LAYA-SRQL is a psychometrically sound instrument with good validity. CONCLUSION: The LAYA-SRQL fills an important need in survivorship research, providing a way to assess HRQOL in LAYAs in a developmentally informed way.
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Neoplasias/psicologia , Psicometria/métodos , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adulto , Feminino , Indicadores Básicos de Saúde , Humanos , Masculino , Saúde Mental , Modelos Psicológicos , Sobreviventes/classificaçãoRESUMO
BACKGROUND: The gold standard of treatment for chronic pain is a multidisciplinary approach in which psychology plays a leading role, but many children and caregivers do not gain access to this treatment. The Comfort Ability® Program (CAP) developed a CBT-oriented group intervention for adolescents and caregivers designed expressly to address access to evidence-based psychological care for pediatric chronic pain. Before the COVID-19 disruption of in-person services, the CAP workshop had been disseminated to a network of 21 children's hospitals across three countries. In March 2020, a virtual (telehealth) format was needed to ensure that children with chronic pain could continue to access this clinical service throughout the CAP Network. METHODS: A model of knowledge mobilization was used to adapt the CAP workshop to a virtual format (CAP-V) and disseminate it to network sites. A pilot study assessing participant and clinician perceptions of acceptability, feasibility, and treatment satisfaction included baseline, post-sessions, and post-program questionnaires. RESULTS: A knowledge mobilization framework informed the rapid development, refinement, and mobilization of CAP-V. Data from a pilot study demonstrated feasibility and high acceptability across participants and clinicians. CONCLUSIONS: A knowledge mobilizationframework provided a roadmap to successfully develop and deploy a virtual behavioral health intervention for adolescents with chronic pain and their caregivers during a worldwide pandemic. While CAP-V has demonstrated preliminary clinical feasibility and acceptability at the CAP hub, ongoing research is needed.
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INTRODUCTION: This study sought to examine stairway safety by identifying associations between fall-related events on stairways, distractions, gait speed, drifting, as well as handrail use and proximity. METHOD: Video recordings captured 11,137 observations of stair users in two public stairways and recorded distractions (e.g., looking at a mobile device, talking on a mobile device, using earbuds or headphones, holding a mobile device, or talking with a peer), gait speed (m/s), drifting (change of direction), as well as handrail use and proximity to a handrail. RESULTS: In our sample, consisting of primarily young adults (observed 18-40â¯years old), we found that when a distraction was present, gait speed was reduced (pâ¯<.001), drifting increased (pâ¯<.001), and handrail use negatively impacted (pâ¯<.001) compared to stair users who were not distracted. CONCLUSIONS: These results indicate that distractions, such as mobile devices, used during stair negotiation can reduce handrail use and increase behaviors associated with fall-related events. PRACTICAL APPLICATIONS: Mobile device use during stairway negotiation increases the likelihood of distraction-induced events. Stair users should be encouraged to limit or avoid mobile device use in public stairway environments. Mobile manufacturers and mobile app developers could aim to develop strategies or mobile app alerts to reduce the impact of distractions (e.g., mobile device use) during stair negotiation to lessen the health and financial burden associated with fall-related events on stairways.
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Negociação , Adolescente , Adulto , Humanos , Adulto JovemRESUMO
OBJECTIVES: Individual understanding of and expectations for chronic pain treatment can influence treatment adherence and thus success, but little is known about these critical factors in parents and children presenting with pain-predominant functional gastrointestinal disorders. The aim of this study was to identify parent and patient understanding of pain-predominant functional gastrointestinal disorders, expectations for treatment, and interventions utilized before presenting to a multidisciplinary clinic. MATERIALS AND METHODS: This was a prospective study of patients evaluated in a Multidisciplinary Functional Abdominal Pain Program. Before the clinic visit, parents and patients completed questionnaires regarding their understanding of chronic pain, perceptions of abdominal pain contributors, expectations regarding treatment, and identification of previous interventions utilized. RESULTS: Participants were knowledgeable regarding the biology of chronic pain. Perceptions of contributors to abdominal pain included a sensitive stomach, general stress, and nerves/worry. Most had attempted to treat their pain with medication, exercise or physical therapy, or a psychological treatment. Participants reported that receiving a definite diagnosis would be the most helpful intervention, followed by psychological treatment. DISCUSSION: Participants were knowledgeable regarding chronic pain, but still indicated that receiving a definite diagnosis would be the most helpful intervention. Most had tried multiple interventions and did not believe that further medication, testing, or surgery would solve their pain. Instead, parents presenting at this Functional Abdominal Pain Program appeared most hopeful about the benefits of multidisciplinary treatment approaches including psychological interventions, a focus on activity and functioning, and complementary and alternative medicine interventions.