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1.
BMC Gastroenterol ; 24(1): 148, 2024 Apr 30.
Artículo en Inglés | MEDLINE | ID: mdl-38689277

RESUMEN

INTRODUCTION: Fatigue is prevalent in people with inflammatory bowel disease (IBD) and has been associated with IBD activity, sleep quality, depression, and anxiety. This study aimed to identify fatigue profiles or clusters through latent profile analysis. METHODS: An online questionnaire was administered through three tertiary IBD centres, social media and through Crohn's Colitis Australia. Fatigue was assessed via the Functional assessment of chronic illness measurement system fatigue subscale (FACIT-F), a validated assessment of fatigue and its severity. Validated measures of anxiety, depression, IBD activity and sleep quality were also included. Latent profile analysis was performed including fatigue, sleep quality, active IBD, and depression and anxiety. The relationships between profiles and IBD and demographic data were investigated. RESULTS: In a cohort of 535 respondents, 77% were female, the median age was 41 years (range 32-52 years), and the majority had Crohn's disease (62%). Severe fatigue was seen in 62%. Latent profile analysis identified four distinct profiles differing by fatigue score - low fatigue, at-risk profile, active IBD, and a poor mental health profile. Female gender, obesity and opioid usage were associated with higher risk of being in the active IBD and poor mental health profile. Age over 40 was associated with lower risk of being in the poor mental health profile. CONCLUSION: Latent profile analysis identifies four classes of fatigue in an IBD cohort with associations with specific risk factors for fatigue along with specific IBD and demographic attributes. This has implications for the classification of fatigue in IBD and treatment algorithms.


Asunto(s)
Ansiedad , Depresión , Fatiga , Enfermedades Inflamatorias del Intestino , Humanos , Femenino , Masculino , Fatiga/etiología , Fatiga/epidemiología , Fatiga/diagnóstico , Adulto , Persona de Mediana Edad , Ansiedad/epidemiología , Depresión/epidemiología , Depresión/etiología , Encuestas y Cuestionarios , Factores de Riesgo , Enfermedades Inflamatorias del Intestino/complicaciones , Enfermedades Inflamatorias del Intestino/psicología , Calidad del Sueño , Índice de Severidad de la Enfermedad , Enfermedad de Crohn/complicaciones , Enfermedad de Crohn/psicología , Enfermedad de Crohn/epidemiología , Factores Sexuales , Australia/epidemiología , Factores de Edad , Análisis de Clases Latentes
2.
An. psicol ; 40(1): 1-11, Ene-Abri, 2024. tab
Artículo en Inglés | IBECS | ID: ibc-229021

RESUMEN

A pesar de los descubrimientos recientes, los pacientes con enfermedad inflamatoria intestinal (EII) aún enfrentan desafíos para lograr la remisión. Los objetivos del estudio fueron identificar las características de los pacientes con el Inventario de Personalidad de Freiburg y la intensidad de la enfermedad colónica, comorbilidades que podrían estar relacionadas con la personalidad de los sujetos. Los datos se recopilaron en el período 2019-2020 de 46 pacientes y utilizaron métodos no paramétricos. En comparación con el grupo de control, las escalas de Inhibición, Problemas de salud y Emocionalidad tenían puntuaciones brutas significativamente más altas. Las escalas de Orientación Social, Franqueza y Extraversión tuvieron puntajes brutos significativamente más bajos. El estado de salud fue un factor médico que influyó en la escala de Quejas Somáticas, los pacientes que tenían lesiones o comorbilidades tenían puntuaciones brutas significativamente más altas. Los pacientes que tenían comorbilidades además de la EII tenían puntuaciones brutas considerablemente más altas en la escala de Excitabilidad. Se requieren intervenciones psicoterapéuticas de cambio en la percepción de la vida para abordar la descripción del sufrimiento subjetivo relacionado con molestias físicas (escala de quejas somáticas), una fuerte orientación hacia el rendimiento (escala de tensión), cambios de humor, ansiedad y pesimismo (escala de emocionalidad). Otra intervención es la reconsideración y (re)priorización de valores, como la familia, las relaciones íntimas, los amigos, la salud, el crecimiento, el desarrollo, el trabajo equilibrado, todos los cuales pueden promover una sensación de bienestar y equilibrio.(AU)


Despite recent discoveries, patients with inflammatory bowel disease (IBD) still face challenges with attainment of remission. The objectives of the study were to identify the characteristics of patients with the Freiburg Personality Inventory and the intensity of the intestinal disease, comorbidities that could be related to the personality of the subjects. Data were collected in the period 2019–2020 from 46 patients and used nonparametric methods. Compared to the normative sample, the Inhibitedness, Health Concerns, and Emotionality scales had significantly higher raw scores. The Social Orientation, Frankness, and Extraversionscales had significantly lower raw scores. Health status was a medical factor that influenced the Somatic Complaintsscale, patients who had lesions or comorbidities had significantly higher raw scores. Patients who had comorbidities in addition to IBD had considerably higher raw scores on the Excitability scale. Psychotherapeutic change interventions regarding life perception are required to tackle the description of subjective suffering related to physical inconveniences (Somatic Complaintsscale), a strong orientation toward performance (Strainscale), mood swings, anxiety, and pessimism (Emotionality scale). Another intervention is reconsidering values and (re) prioritization, such as family, intimate relationships, friends, health, growth, development, balanced work, all of which can promote a feeling of well-being and balance.(AU)


Asunto(s)
Humanos , Masculino , Femenino , Enfermedades Inflamatorias del Intestino/psicología , Inventario de Personalidad , Psicoterapia/métodos , Síntomas Afectivos , Enfermedad de Crohn/psicología , Psicología , Psicología Clínica , Medicina de la Conducta , Enfermedades Inflamatorias del Intestino/diagnóstico , Enfermedades Inflamatorias del Intestino/terapia , Colitis Ulcerosa
3.
Artículo en Inglés | MEDLINE | ID: mdl-38673373

RESUMEN

There is increasing research and clinical interest in physical activity (PA) as an adjuvant therapy for improving health outcomes among persons with Crohn's disease. To date, little is known regarding PA behavior and its cognitive and behavioral correlates in Crohn's disease. Thus, we assessed self-reported PA and its social cognitive theory (SCT) correlates in a sample of persons with Crohn's disease. Data on demographic and clinical characteristics, disease activity, leisure-time PA, and SCT variables were collected from 30 participants with Crohn's disease (90% White, 60% female) through an online survey. SCT variables assessed included exercise self-efficacy, social support, outcome expectations, goal setting, and planning. Analyses involved comparing PA levels and SCT survey scores using independent sample t-tests and non-parametric bivariate correlations. The majority of participants were in clinical remission (60%) and over half (57%) were classified as physically active, yet the mean PA level was lower than normative values for adults. Females (n = 18) and participants who reported previous surgery for Crohn's disease (n = 18) were almost twice as physically active as male participants and those without a history of Crohn's disease-related surgery, respectively (p's < 0.05). Overall, participants who reported greater exercise goal setting behaviors had higher levels of PA (rs = 0.34; p < 0.05). These findings highlight lower overall levels of PA in persons with Crohn's disease, and exercise goal setting represents a potential target of behavior change interventions for increasing PA in this population.


Asunto(s)
Enfermedad de Crohn , Ejercicio Físico , Humanos , Enfermedad de Crohn/psicología , Enfermedad de Crohn/terapia , Femenino , Masculino , Estudios Transversales , Adulto , Persona de Mediana Edad , Ejercicio Físico/psicología , Cognición Social , Adulto Joven , Autoeficacia
4.
Dig Dis Sci ; 69(5): 1636-1648, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38493273

RESUMEN

BACKGROUND: The real-world application of STRIDE-II treatment targets to identify whether disease control is optimal in Crohn's disease (CD) and ulcerative colitis (UC) is not well known. AIMS: This study aimed to estimate proportions of patients with suboptimally controlled CD and UC in real-world Canadian healthcare settings and the impact on quality of life (QoL). METHODS: The noninterventional, multicenter, observational IBD-PODCAST Canada study comprised a single study visit involving routine assessments, patient- and clinician-completed questionnaires, and a retrospective chart review. Primary outcomes were proportions of patients with STRIDE-II-based red flags indicative of suboptimal disease control and mean ± standard deviation Short Inflammatory Bowel Disease Questionnaire (SIBDQ) scores. Secondary outcomes included proportions of patients and clinicians subjectively reporting suboptimal control. RESULTS: Among 163 enrolled patients from 10 sites, 45/87 patients with CD (51.7%; 95% CI: 40.8%, 62.6%) and 33/76 patients with UC (43.3%; 95% CI: 32.1%, 55.3%) had suboptimal disease control based on STRIDE-II criteria. Suboptimal control was subjectively reported at lower proportions (patients: CD, 15.0%; UC, 18.6%; clinicians: CD, 19.5%; UC, 25.0%). Numerically lower SIBDQ scores were observed with suboptimal control (CD, 43.0 ± 10.8; UC, 42.5 ± 12.0) than with optimal control (CD, 58.2 ± 7.2; UC, 57.8 ± 6.6). CONCLUSIONS: Approximately 50% (CD) and 40% (UC) of patients from real-world Canadian practices had suboptimal disease control based on STRIDE-II criteria. Suboptimal control was underestimated by patients and clinicians and accompanied by reduced QoL, suggesting further efforts to implement STRIDE-II treat-to-target strategies are needed.


Asunto(s)
Enfermedad de Crohn , Calidad de Vida , Humanos , Femenino , Masculino , Canadá/epidemiología , Adulto , Enfermedad de Crohn/psicología , Persona de Mediana Edad , Colitis Ulcerosa/psicología , Colitis Ulcerosa/terapia , Estudios Retrospectivos , Encuestas y Cuestionarios
5.
United European Gastroenterol J ; 12(3): 374-389, 2024 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-38315582

RESUMEN

AIMS: To investigate the current situation of mental psychology and quality of life (QoL) in patients with inflammatory bowel disease (IBD) in China, and analyze the influencing factors. METHODS: A unified questionnaire was developed to collect clinical data on IBD patients from 42 hospitals in 22 provinces from September 2021 to May 2022. Multivariate Logistic regression analysis was conducted, and independent influencing factors were screened out to construct nomogram. The consistency index (C-index), receiver operating characteristic (ROC) curve, area under the ROC curve (AUC), calibration curve, and decision curve analysis (DCA) were used to evaluate the discrimination, accuracy, and clinical utility of the nomogram model. RESULTS: A total of 2478 IBD patients were surveyed, including 1371 patients with ulcerative colitis (UC) and 1107 patients with Crohn's disease (CD). Among them, 25.5%, 29.7%, 60.2%, and 37.7% of IBD patients had anxiety, depression, sleep disturbance and poor QoL, respectively. The proportion of anxiety, depression, and poor QoL in UC patients was significantly higher than that in CD patients (all p < 0.05), but there was no difference in sleep disturbance between them (p = 0.737). Female, higher disease activity and the first visit were independent risk factors for anxiety, depression and sleep disturbance in IBD patients (all p < 0.05). The first visit, higher disease activity, abdominal pain and diarrhea symptoms, anxiety, depression and sleep disturbance were independent risk factors for the poor QoL of patients (all p < 0.05). The AUC value of the nomogram prediction model for predicting poor QoL was 0.773 (95% CI: 0.754-0.792). The calibration diagram of the model showed that the calibration curve fit well with the ideal curve, and DCA showed that the nomogram model could bring clinical benefits. CONCLUSION: IBD patients have higher anxiety, depression, and sleep disturbance, which affect their QoL. The nomogram prediction model we constructed has high accuracy and performance when predicting QoL.


Asunto(s)
Colitis Ulcerosa , Enfermedad de Crohn , Enfermedades Inflamatorias del Intestino , Trastornos del Sueño-Vigilia , Femenino , Humanos , China/epidemiología , Colitis Ulcerosa/diagnóstico , Colitis Ulcerosa/epidemiología , Colitis Ulcerosa/psicología , Enfermedad de Crohn/diagnóstico , Enfermedad de Crohn/epidemiología , Enfermedad de Crohn/psicología , Enfermedades Inflamatorias del Intestino/epidemiología , Enfermedades Inflamatorias del Intestino/psicología , Calidad de Vida , Trastornos del Sueño-Vigilia/epidemiología , Trastornos del Sueño-Vigilia/etiología , Trastornos del Sueño-Vigilia/diagnóstico , Masculino
6.
Inflamm Bowel Dis ; 30(4): 538-546, 2024 Apr 03.
Artículo en Inglés | MEDLINE | ID: mdl-37260357

RESUMEN

BACKGROUND: The impact of inflammatory bowel disease (IBD) on caregivers has rarely been investigated. Our work aims to explore the burden of IBD on the different aspects of caregivers' lives. METHODS: We conducted an online survey via the social network of the French IBD patient organization addressed to patients' caregivers who were asked to fill in a questionnaire covering the impact of the disease on different aspects of their lives. Impacts were measured by a visual analog scale (VAS). A VAS score ≥5 of 10 was considered significantly high. We then performed uni- and multivariate analyses of predictors of higher impact on parents and partners, separately. RESULTS: A total of 853 caregivers participated, predominantly women (77%). The mean age was 48.5 years. Their relationship with the patient was mainly parents in 57.1% and partners in 30.6%. The type of IBD was Crohn's disease in 63% and ulcerative colitis in 35%. The psychological burden was the highest among parents and was mainly correlated with a lack of knowledge about IBD and professional compromise (P < .05). The impact on leisure was the highest among partners and was affected by psychological, sexual, and professional burdens (P < .05). About 50% of partners experienced an absent sexual relationship for weeks/months and decreased libido regardless of IBD type. Professional impact was greater in parents compared with partners, and 36% of caregivers needed work arrangements. CONCLUSIONS: IBD has a high impact on different aspects of life of patients' caregivers. Therefore, interventions to reduce the disease burden in this population are needed.


Caregivers of patients with inflammatory bowel disease go through many psychological, social, and professional difficulties. Implementing adequate psychosocial interventions may improve their quality of life.


Asunto(s)
Colitis Ulcerosa , Enfermedad de Crohn , Enfermedades Inflamatorias del Intestino , Humanos , Femenino , Persona de Mediana Edad , Masculino , Cuidadores/psicología , Calidad de Vida , Enfermedades Inflamatorias del Intestino/psicología , Enfermedad de Crohn/psicología , Colitis Ulcerosa/psicología , Encuestas y Cuestionarios
7.
J Psychiatr Res ; 169: 231-237, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-38048672

RESUMEN

BACKGROUND: Crohn's disease (CD) and ulcerative colitis (UC) are characterized by chronic intestinal and systemic inflammation. The extraintestinal sequelae of inflammatory bowel disease (IBD) are major contributors to disease morbidity and significantly affect patients' quality of life. Here, we evaluated the association between IBD and subsequent depression or anxiety disorder in a large outpatient collective from Germany. METHODS: 15,864 individual IBD patients (CD: n = 6,791, UC: n = 9073) and 15,864 nearest neighbor propensity score matched patients without IBD were included from the Disease Analyzer database (IQVIA). Diagnoses of depression and anxiety disorders were compared between IBD and non-IBD patients during a five-year follow-up period using Kaplan-Meier estimators and Cox-regression models. RESULTS: After 5 years of follow-up, depression was diagnosed in 14.4% of CD patients versus 10.2% of matched pairs (p < 0.001) and in 13.1% of UC patients versus 10.1% of matched pairs (p < 0.001). In line, the incidence of anxiety order was significantly higher among CD (4.7% vs. 4.4%, p = 0.009) and UC patients (4.3% vs. 3.5%, p = 0.005). Regression analysis confirmed a significant association between IBD and both mental conditions (Hazard Ratio (HR)CD/depression: 1.40, HRUC/depression: 1.32, HRCD/anxiety disorder: 1.21, HRUC/anxiety disorder: 1.28). Subgroup analyses revealed a stronger association for CD and depression (HR: 1.51) and UC and depression (HR:1.49) among male patients as well as UC and anxiety disorders (HR: 1.51) among female patients. CONCLUSION: Our data argue for a significant association between IBD and mental diseases including depression and anxiety disorders. Although further pathophysiological research is warranted, we hypothesize that specific psychological screening measures in IBD patients could improve quality of life and outcome.


Asunto(s)
Colitis Ulcerosa , Enfermedad de Crohn , Enfermedades Inflamatorias del Intestino , Humanos , Masculino , Femenino , Depresión/epidemiología , Depresión/etiología , Estudios Retrospectivos , Pacientes Ambulatorios , Calidad de Vida , Enfermedades Inflamatorias del Intestino/complicaciones , Enfermedades Inflamatorias del Intestino/epidemiología , Colitis Ulcerosa/complicaciones , Colitis Ulcerosa/epidemiología , Colitis Ulcerosa/psicología , Enfermedad de Crohn/epidemiología , Enfermedad de Crohn/complicaciones , Enfermedad de Crohn/psicología , Trastornos de Ansiedad/complicaciones
8.
Rev. esp. enferm. dig ; 116(4): 193-200, 2024. tab, graf
Artículo en Inglés | IBECS | ID: ibc-232462

RESUMEN

Background and objectives: inflammatory bowel disease (IBD) has a major impact on psychological well-being. This condition is associated with a high level of anxiety and mood disorders, but stress prevalence and how an individual copes with IBD have not been sufficiently explored. The objective of this study was to assess the impact of the disease on psychological disorders and to identify coping strategies used by patients with IBD, as well as to analyze the relationship between these variables and sociodemographic and clinical variables. Methods: a cross-sectional prospective study was performed including 126 consecutive patients. Those with psychiatric conditions prior to the onset of the IBD were excluded. Independent variables were measured using a sociodemographic and clinical questionnaire. The patients completed the Hospital Anxiety and Depression Scale (HADS), the Perceived Stress Scale (PSS) and the BRIEF COPE questionnaire. Quality of life was measured using the nine-item IBD Quality of Life (IBDQ-9). Results: the final cohort comprised 100 patients (37 with ulcerative colitis and 63 with Crohn’s disease). The prevalence rates of the variables of stress, anxiety and depression were high (44 %, 24 % and 14 %, respectively). Stress and depression were higher in females (p < 0.05), without differences regarding other sociodemographic and clinical variables. Moreover, higher levels of anxiety and depression were found to be associated with stress and dysfunctional coping strategies (p < 0.01). Conclusions: patients with IBD, particularly women, have high rates of psychological disorders. Those with anxiety and depression presented more stress and used more dysfunctional strategies. These conditions must be considered for a multidisciplinary management. (AU)


Asunto(s)
Humanos , Masculino , Femenino , Persona de Mediana Edad , Enfermedades Inflamatorias del Intestino/psicología , Enfermedad de Crohn/psicología , Colitis Ulcerosa/psicología , Ansiedad , Depresión , Estrés Psicológico , Calidad de Vida , Religión y Medicina
9.
Dig Dis Sci ; 68(12): 4368-4380, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-37897556

RESUMEN

BACKGROUND: Crohn's Colitis Care is an adult inflammatory bowel disease eHealth system. Crohn's Colitis Care required additional pediatric functionality to enable life-long records and mitigate transition inadequacies. AIM: This study describes and evaluates a consensus method developed to ensure consumer needs were met. METHODS: Pediatric-specific functionality and associated resources considered important for inclusion were developed by a clinician consensus group. This group was divided into thematic subgroups and underwent two voting rounds. The content validity index was used to determine items reaching consensus. Children with inflammatory bowel disease and their parents were later shown a descriptive list of non-clinical inclusion topics proposed by the consensus group, and asked to vote on whether topic-related functionality and resources should be included. RESULTS: The consensus process consulted 189 people in total (38 clinicians, 32 children with inflammatory bowel disease and 119 parents). There was agreement across all groups to incorporate functionality and resources pertaining to quality of life, mental health, self-management, and transition readiness; however, divergence was seen for general inflammatory bowel disease facts, your inflammatory bowel disease history, and satisfaction. Cost saw the greatest disparity, being less supported by consumers compared to clinicians. Over 75% of consumers agreed it would be okay for appointments to take longer for survey completion, and > 90% thought Crohn's Colitis Care should allow consumers to ask their treating team questions. CONCLUSIONS: Widespread consumer co-design and consultation were important in unveiling differing perspectives to ensure Crohn's Colitis Care was built to support both consumer and clinician perspectives. Consumers collaborate to create a list of functionality and resources to be included in software (left), influencing the final product build (right).


Asunto(s)
Colitis Ulcerosa , Colitis , Enfermedad de Crohn , Enfermedades Inflamatorias del Intestino , Adulto , Niño , Humanos , Calidad de Vida , Enfermedades Inflamatorias del Intestino/terapia , Enfermedad de Crohn/terapia , Enfermedad de Crohn/psicología , Derivación y Consulta , Colitis Ulcerosa/psicología
10.
BMC Psychiatry ; 23(1): 768, 2023 10 20.
Artículo en Inglés | MEDLINE | ID: mdl-37864158

RESUMEN

BACKGROUND: In this study, we investigated the coping mechanisms and stress perceptions of adolescent patients with Crohn's disease. METHODS: Using semi-structured face-to-face interviews, we conducted an extensive qualitative study of the disease perceptions, stress experiences, and corresponding coping mechanisms in adolescent patients with Crohn's disease. We used Colaizzi content analysis to synthesize the themes. RESULTS: The two main themes in this study were inappropriate coping mechanisms and physical and psychological stress. The primary initiators of physical and psychological stress in adolescents with Crohn's disease were weak disease perception, symptom distress, negative emotions, lack of support, and multiple stressors. The decrease in self-management and self-control induced by the initiators led to changes in cognition, emotions, and attitudes, which subsequently led to poor coping behavior. CONCLUSION: Adolescents with Crohn's disease can better combat the condition by implementing appropriate coping strategies. Their mental health should be given attention, and a multidisciplinary team should be assembled to provide them with supportive care.


Asunto(s)
Enfermedad de Crohn , Humanos , Adolescente , Enfermedad de Crohn/psicología , Adaptación Psicológica , Estrés Psicológico , Emociones , Salud Mental , Investigación Cualitativa
11.
BMJ Open ; 13(10): e076219, 2023 10 24.
Artículo en Inglés | MEDLINE | ID: mdl-37879697

RESUMEN

OBJECTIVES: This study aims to assess the relative of social support and psychological distress in disease activity among patients with Crohn's disease (CD) in China, and explore whether sex moderates the relationship between disease activity and social support and psychological distress in CD. DESIGN: Our study has a cross-sectional design. SETTING: This was a single-centre study, which was conducted in Wuhan, China. PARTICIPANTS: A total of 184 patients with CD at Union Hospital, Tongji Medical College, Huazhong University of Science and Technology were enrolled in this study; of these,162 patients were included in the final analysis. PRIMARY AND SECONDARY OUTCOME MEASURES: The main study outcome was the CD patients' clinical and questionnaire data. The association of disease activity, social support and psychological distress with patients with CD was also evaluated based on the collected data. RESULTS: A total of 162 patients with CD were enrolled. Compared with patients with CD in remission (CD-R), the patients with CD in activity (CD-A) had higher C reactive protein (CRP) (p=0.001), anaemia (p<0.001) and relapse rates in the last year (p<0.001). Independent samples t-tests indicated that the CD-A group reported lower Social Support Rating Scale scores and higher Symptom Checklist-90 scores than the CD-R group. Moreover, men with CD had lower somatisation (p=0.030) and anxiety (p=0.050) scores than women. In binary logistic regression models, the subjective support (beta=0.903, p=0.013), the clinical factors of CRP (beta=1.038, p=0.001) and psychological distress factors of anxiety (beta=1.443, p=0.008) and other (beta=1.235, p=0.042) were disease activity predictors. CONCLUSION: The findings highlight the importance of the psychological distress and social support factors that may play a role in CD patients' health. Interventions to address these issues should be part of management in CD.


Asunto(s)
Enfermedad de Crohn , Distrés Psicológico , Masculino , Humanos , Femenino , Enfermedad de Crohn/complicaciones , Enfermedad de Crohn/psicología , Estudios Transversales , Estrés Psicológico/epidemiología , Estrés Psicológico/etiología , Estrés Psicológico/psicología , Proteína C-Reactiva , Hospitales , Apoyo Social
12.
BMC Gastroenterol ; 23(1): 244, 2023 Jul 18.
Artículo en Inglés | MEDLINE | ID: mdl-37464276

RESUMEN

BACKGROUND: Some patients with Crohn's disease report posttraumatic growth, which can promote reductions in anxiety and depression, and improve the patient's quality of life. However, the process of posttraumatic growth remains unclear. The objectives of this study were to explore the social-psychological process of posttraumatic growth in patients with Crohn's disease in the context of Chinese culture and construct an interpretive understanding based on the perspectives of patients. METHODS: This research adopted Charmaz's constructivist grounded theory. Nineteen participants with Crohn's disease were selected by purposive and theoretical sampling from three hospitals in Hangzhou, Zhejiang Province, as well as from the China Crohn's & Colitis Foundation. In-depth interviews were conducted. Data analysis was based on initial, focused and theoretical coding strategies, and methods such as constant comparison and memo writing were adopted. The Consolidated Criteria for Reporting Qualitative Research, a 32-item checklist for interviews and focus groups, was utilised. RESULTS: An interpretive understanding of posttraumatic growth in patients with Crohn's disease was constructed. The core category was "reconstructing self from the illness", which included the following four categories: "suffering from the illness", "accepting the illness", "dancing with the illness" and "enriching life beyond the illness". However, not every patient reached the last phase. Before patients enter the next stage, they might begin a new cycle by experiencing new suffering or discovering new unacceptable facts about the illness. CONCLUSIONS: This interpretive understanding reveals a growth process centred on "reconstructing self from the illness". These findings provide knowledge on the process of posttraumatic growth in patients with Crohn's disease within the wider sociocultural context.


Asunto(s)
Enfermedad de Crohn , Crecimiento Psicológico Postraumático , Humanos , Enfermedad de Crohn/psicología , Teoría Fundamentada , Calidad de Vida , Investigación Cualitativa
13.
J Adv Nurs ; 79(10): 3824-3836, 2023 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-37243391

RESUMEN

AIMS: To longitudinally explore the symptom experience of Chinese patients with Crohn's disease within the first year following their diagnosis. DESIGN: A longitudinal qualitative study. METHOD: Eighteen newly diagnosed Chinese patients with Crohn's disease were recruited through purposive sampling. Semi-structured interviews were conducted at four time points: soon after diagnosis, 3, 6 and 12 months post-diagnosis. Data were collected between January 2021 and February 2022. Conventional content analysis was used for data analysis of each time point. Afterwards, the data of each time point were compared longitudinally. COREQ checklist was followed. RESULTS: Three themes and eight sub-themes were formed through analysis: feelings towards symptoms (symptoms make me feel uneasy, symptoms make me feel inferior and symptoms make me feel helpless); acceptability of symptoms (difficult to accept, have to accept, be able to accept); functions of symptoms (assessing disease conditions and treatment effects, warning of disease management). CONCLUSIONS: Overall, the negative emotions related to symptoms gradually decreased over time, and the patient's acceptance of symptoms increased within the first year following diagnosis. In addition, when the disease was in remission after treatment, the warning function of symptoms gradually weakened. IMPACT: The process of how patients accept their symptoms found in this study provides a basis for nurses to improve patients' acceptance of symptoms and reduce their symptom-related negative emotions. This study also emphasizes the phenomenon that patients gradually ignore some symptoms with their increased acceptance level, which warrants additional health education to strengthen their awareness of self-management. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution was required to design or undertake this study. Patients contributed only to the data collection and member checking.


Asunto(s)
Enfermedad de Crohn , Humanos , Enfermedad de Crohn/diagnóstico , Enfermedad de Crohn/psicología , Pueblos del Este de Asia , Emociones , Investigación Cualitativa , Pacientes
14.
Gastroenterol Nurs ; 46(2): 95-106, 2023.
Artículo en Inglés | MEDLINE | ID: mdl-36882914

RESUMEN

The purpose of this qualitative study was to explore the illness experience of adolescent patients with Crohn disease and describe the impact of the disease on the everyday lives of these individuals within the Chinese social and cultural context to provide references for targeted interventions for the healthcare team. A descriptive qualitative design was adopted. Purposive sampling was used to select Chinese adolescent patients with Crohn disease to participate in face-to-face in-depth interviews. Data analysis was performed using the conventional content analysis method. Through the analysis of data from 14 adolescent patients with Crohn disease, four themes were formed: (1) I am different from others, (2) I am a burden to my parents, (3) I want to be the master of my own body, and (4) I grow up suffering from illness. Healthcare providers should offer more psychological support to adolescent Crohn disease patients and advise parents to shift more attention to the mental health of their children.


Asunto(s)
Enfermedad de Crohn , Adolescente , Niño , Humanos , Enfermedad de Crohn/diagnóstico , Enfermedad de Crohn/psicología , Pueblos del Este de Asia , Investigación Cualitativa
15.
Turk J Gastroenterol ; 33(5): 387-396, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-35678796

RESUMEN

BACKGROUND: Coronavirus disease 2019 pandemic was expected to have traumatic effects and increase the anxiety levels of inflamma- tory bowel disease patients. METHODS: We aimed to investigate the psychosocial effects of the coronavirus disease 2019 pandemic on patients with inflammatory bowel disease by revealing the risk perception for present disease, coping strategies, follow-up characteristics, and treatment adher- ence. This is a cross-sectional, web-based survey study including 798 inflammatory bowel disease patients who were followed at our outpatient clinic and 303 volunteer who did not have any known chronic diseases and were not health professionals were included as the control group. RESULTS: In this study, 281 of the patients were diagnosed with Crohn's disease and 215 with ulcerative colitis. The mean age of patients with Crohn's disease, ulcerative colitis, and the control group were 40.9 ± 13.1, 42.3 ± 12.7, and 39.9 ± 11.6, respectively. Here, 119 (42%) of the Crohn's disease cases, 116 (54%) of the ulcerative colitis cases, and 170 (56%) of the control group were male. Among the 3 groups, coronavirus disease 2019-related post-traumatic stress disorder rates (Impact of Event Scale-Revised > 33) and State-Trait Anxiety Inventory of current status of anxiety-related anxiety rates were not statistically different while State-Trait Anxiety Inventory of anxiety tendency-related constant anxiety was higher in inflammatory bowel disease patients than the control group (P < .017). CONCLUSION: Inflammatory bowel disease patients with anxiety have a lower quality of life, and this may worsen the clinical course of the disease. Coronavirus disease 2019 is a major source of stress for such a vulnerable population. During the pandemic, psychological support and mental health awareness should be made accessible to all individuals.


Asunto(s)
COVID-19 , Colitis Ulcerosa , Enfermedad de Crohn , Enfermedades Inflamatorias del Intestino , COVID-19/epidemiología , Enfermedad Crónica , Colitis Ulcerosa/psicología , Enfermedad de Crohn/complicaciones , Enfermedad de Crohn/psicología , Estudios Transversales , Femenino , Humanos , Enfermedades Inflamatorias del Intestino/epidemiología , Enfermedades Inflamatorias del Intestino/psicología , Masculino , Pandemias , Calidad de Vida
16.
Turk J Gastroenterol ; 33(5): 406-413, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-35678798

RESUMEN

BACKGROUND: Patients with Crohn's disease experience major deterioration in work productivity and quality of life. We aimed to provide the long-term effects of anti-tumor necrosis factor agents on work productivity and activity impairment and quality of life in patients with Crohn's disease using the Inflammatory Bowel Disease Questionnaire and the Short-Form Health Survey-36. METHODS: Patients with Crohn's disease and initiated an anti-tumor necrosis factor treatment were included and followed up for 12 months in this observational study. RESULTS: A total of 106 patients were included in this study, and 64.2% of the patients were males. Mean [± standard deviation] age was 36.8 [± 10.9] years. At baseline, mostly perianal fistulas [65.7%] were observed [n = 23]. Intestinal stenosis was detected in 34.9% of the patients [n = 37], and most of the stenosis was located in the ileum [70.6%] followed by the colon [20.6%]. Extraintestinal symp- toms were observed in 24 patients [22.6%]. Most frequent extraintestinal symptom was arthritis with 71.4% [n = 15]. Mean time from first symptom to initiation of anti-tumor necrosis factor treatment was 6.3 [± 5.0] years. Improvements in work productivity and activ- ity impairment scores throughout 12 months were -24.1% [P = .003] for work time missed, -18.0% [P = .006] for impairment at work, -8.5% [P = .160] for overall work impairment, and -17.0% [P < .001] for daily activity impairment. Similarly, significant improvements [P < .001] were detected in all components of the Inflammatory Bowel Disease Questionnaire when compared to baseline. Statistically sig- nificant improvements [P < .05] were detected for all components of Short-Form Health Survey-36 except for mental health [P = .095]. CONCLUSION: Our study indicates the significant improvement in work productivity and activity impairment and quality of life of patients with Crohn's disease who receive long-term anti-tumor necrosis factor treatment.


Asunto(s)
Enfermedad de Crohn , Constricción Patológica , Enfermedad de Crohn/tratamiento farmacológico , Enfermedad de Crohn/psicología , Femenino , Humanos , Masculino , Calidad de Vida , Resultado del Tratamiento , Factor de Necrosis Tumoral alfa , Turquía
17.
Artículo en Inglés | LILACS | ID: biblio-1402182

RESUMEN

Inflammatory bowel disease (IBD) is a chronic inflammatory disorder of the gastrointestinal tract, occurring main-ly in the young, socioeconomically active age group. Both the recurrent-remitting course of symptoms and the chronicity of the disease impact patients' quality of life (QoL). Objective: determine the contributing factors asso-ciated with QoL in IBD patients in a tertiary service. Methods: a cross-sectional study of patients seen at the IBD outpatient clinic of the Federal University of Pelotas from January to November 2020, with clinical and laboratory data collection. Disease assessment was performed using Crohn's Disease Activity Index for Crohn's disease and Mayo score for ulcerative colitis and quality of life through the Inflammatory Bowel Disease Questionnaire (IBDQ). Results: the presence of a history of depression resulted in a significant impact on the overall QoL (p = 0.005) and mainly in the systemic symptoms (p = 0.04), social (p <0.001), and emotional (p = 0.008) domains. Regarding disease activity, statistical significance was evidenced in the intestinal symptoms domain (p <0.001) and overall QoL (p <0.001). Conclusion: a history of psychiatric illness and IBD disease activity were predictors of poorer QoL assessed by the IBDQ (AU)


A doença inflamatória intestinal (DII) é um distúrbio inflamatório crônico do trato gastrointestinal ocorrendo prin-cipalmente na faixa etária jovem socioeconomicamente ativa. Tanto o curso recorrente-remitente dos sintomas quanto a cronicidade da doença impactam a qualidade de vida (QoL) dos pacientes. Objetivo: avaliar a qualidade de vida de pacientes com DII em um serviço terciário. Métodos: estudo transversal de pacientes atendidos no ambulatório de DII da Universidade Federal de Pelotas no período de janeiro a novembro de 2020, com coleta de dados clínicos e laboratoriais. A atividade de doença foi avaliada pelo Crohn's Disease Activity Index para os casos de Doença de Crohn e escore de Mayo para os casos de retocolite ulcerativa e QoL por meio do Inflammatory Bowel Disease Questionnaire (IBDQ). Resultados: a presença de história de depressão resultou em impacto significativo na QoL (p = 0,005) e principalmente nos domínios sintomas sistêmicos (p = 0,04), social (p < 0,001) e emocional (p = 0,008). Em relação à atividade da doença, evidenciado significância estatística nos domínios sintomas intes-tinais (p < 0,001) e qualidade global (p < 0,001). Conclusão: há evidências de que os pacientes com história de depressão e não remissão da DII apresentam maior impacto na qualidade de vida avaliados pelo IBDQ (AU)


Asunto(s)
Humanos , Proctocolitis/psicología , Calidad de Vida , Enfermedad de Crohn/psicología , Depresión/diagnóstico
18.
Scand J Gastroenterol ; 57(5): 566-573, 2022 05.
Artículo en Inglés | MEDLINE | ID: mdl-35188859

RESUMEN

BACKGROUND AND AIMS: In Crohn's disease (CD), a composite therapeutic target was recently recommended, including both objective measurement (endoscopic remission) and Patient-Reported Outcomes (resolution of abdominal pain and normalization of bowel function). All dimensions of health-related quality of life (HRQoL) are impacted: not only bowel symptoms but also systemic symptoms, emotional wellbeing and social function. Thus, understanding the predictors of each HRQoL dimension would improve patient management. However, analysis of these factors has only been found in a few publications, with some limitations. Therefore, this study aimed to explore the evolution of the HRQoL of CD patients during six months after initiation of anti-TNF and to identify its predictors. METHODS: We analyzed data of 56 patients included in a multicenter prospective cohort study (COQC-PIT). HRQoL measures (using IBDQ-32) and data related to patient, disease and treatment characteristics were collected every two months. Generalized estimating equations were used. RESULTS: Overall HRQoL was significantly improved 2 months after anti-TNF initiation, and then stagnated. Patient, disease, and treatment characteristics have differentiated impacts on the overall score and on each dimension of quality of life. Subcutaneous anti-TNF had no significant effect on overall HRQoL, improving only emotional function and bowel symptoms. Concomitant use of corticosteroids and/or immunomodulators impaired almost all dimensions. Having children or working altered bowel symptoms. Disease duration and active smoking negatively impact emotional function and systemic symptoms. CONCLUSIONS: Each HRQoL dimension, not only bowel symptoms, and their influencing factors should therefore be considered in medical decision-making, especially in months following the initiation of a new treatment such as anti-TNF.


Asunto(s)
Enfermedad de Crohn , Niño , Enfermedad de Crohn/tratamiento farmacológico , Enfermedad de Crohn/psicología , Humanos , Estudios Prospectivos , Calidad de Vida , Inhibidores del Factor de Necrosis Tumoral
19.
Turk J Gastroenterol ; 33(2): 103-110, 2022 02.
Artículo en Inglés | MEDLINE | ID: mdl-35115287

RESUMEN

BACKGROUND: Inflammatory bowel disease is associated with poor quality of life. The aim of the cross-sectional study was to extend the common sense model to explore the impact of inflammatory bowel disease activity on quality of life and the potential mediating roles of illness perceptions, visceral sensitivity, coping styles, acceptance, and psychological distress. METHODS: A total of 141 inflammatory bowel disease patients (86 with Crohn's disease and 55 with ulcerative colitis; 74 males, 65 females, and 2 gender non-specific, mean age 40.43 years) from 2 metropolitan hospital inflammatory bowel disease outpatient clinics participated. Measures included disease activity (Crohn's Disease Activity Index, Simple Clinical Colitis Activity Index), illness perceptions (Brief Illness Perceptions Questionnaire), visceral sensitivity (Visceral Sensitivity Index), coping styles (Brief Coping Operations Preference Enquiry), acceptance (Acceptance and Action Questionnaire-II), psychological distress (Depression, Anxiety, and Stress Scale), and European Health Interview Survey-Quality of Life (EUROHIS-QoL). RESULTS: A structural equation model of the extended common sense model was found to have a good fit (χ2(10) = 10.07, P = .43, root mean square error of approximation = 0.01, standardized root mean residual = 0.04, comparative index fit = 1.00, Tucker-Lewis index = 1.00, goodness-of-fit = 0.98). After controlling for irritable bowel syndrome diagnosis, the impact of disease activity on quality of life was statistically mediated by illness perceptions, maladaptive coping styles, and psychological distress. In addition, visceral sensitivity bordered on influencing the impact of disease activity and illness perceptions on quality of life through psychological distress. CONCLUSIONS: This study demonstrates that together with illness perceptions and coping styles, visceral sensitivity plays an important role in an individual's adaption to living with inflammatory bowel disease.


Asunto(s)
Enfermedad de Crohn , Enfermedades Inflamatorias del Intestino , Adulto , Enfermedad Crónica , Enfermedad de Crohn/psicología , Estudios Transversales , Depresión/psicología , Femenino , Humanos , Masculino , Calidad de Vida/psicología , Índice de Severidad de la Enfermedad , Estrés Psicológico/diagnóstico , Estrés Psicológico/psicología , Encuestas y Cuestionarios
20.
Inflamm Bowel Dis ; 28(5): 728-733, 2022 05 04.
Artículo en Inglés | MEDLINE | ID: mdl-34245258

RESUMEN

BACKGROUND: Studies of adults with Crohn's disease (CD) suggest that poor mental health precedes worsening disease activity. We evaluated whether depression and/or anxiety forecast worsening pediatric CD disease activity. METHODS: Through the Inflammatory Bowel Disease Partners Kids & Teens internet-based cohort, children with CD age 9 to 17 completed Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric measures and the short Crohn's disease activity index (sCDAI). Using general linear models, we examined how baseline PROMIS Pediatric anxiety and depressive symptom scores independently associate with subsequent sCDAI scores (average survey interval 6.4 months). Models included baseline PROMIS Pediatric anxiety and depressive symptoms scores, baseline sCDAI, sex, age, parental education, race/ethnicity, and prior IBD-related surgery. We performed a post hoc subanalysis of children in baseline remission (sCDAI <150) with otherwise identical models. RESULTS: We analyzed 159 children with CD (mean age 14 years, 45% female, 84% in baseline remission). We found no association between baseline PROMIS Pediatric anxiety score and subsequent sCDAI (change in sCDAI for 3-point change in PROMIS Pediatric -0.89; 95% CI -4.81 to 3.03). Baseline PROMIS Pediatric depressive symptoms score was not associated with future sCDAI (change in sCDAI for 3-point change in PROMIS Pediatric <0.01; 95% CI -4.54 to 4.53). In a subanalysis of patients in remission at baseline, the lack of association remained. CONCLUSION: We found that neither anxiety nor depressive symptoms associate with subsequent disease activity in pediatric CD. These findings contrast with adult IBD studies, thus underschoring the unique pathophysiology, natural history, and outcomes of pediatric CD.


Asunto(s)
Enfermedad de Crohn , Enfermedades Inflamatorias del Intestino , Adolescente , Adulto , Ansiedad/etiología , Ansiedad/psicología , Niño , Enfermedad de Crohn/complicaciones , Enfermedad de Crohn/psicología , Depresión/etiología , Depresión/psicología , Femenino , Humanos , Enfermedades Inflamatorias del Intestino/complicaciones , Masculino , Medición de Resultados Informados por el Paciente
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