RESUMO
BACKGROUND: Inflammatory bowel disease (IBD) is a chronic, lifelong disease, so IBD patients are highly susceptible to negative emotions, such as anxiety and depression, resulting in a reduced quality of life. Mindfulness-based intervention (MBI) is widely used to reduce stress, anxiety and depression in people. Therefore, this study conducted a systematic review of mindfulness-based intervention training on anxiety, depression, and quality of life in patients with IBD through meta-analysis. METHODS: Search papers in PubMed, Web of Science, Cochrane Library, Google Scholar, CNKI, Wanfang, and Embase databases. The search time limit was from the establishment of the database to May 2023. Randomized controlled trial studies of the effect of mindfulness intervention training on patients with IBD were screened, the included results were integrated and analyzed, and ReviewManager 5.4 was used for meta-analysis. RESULTS: A total of 14 studies with a total of 1030 IBD patients were included. A total of 10 studies showed that the anxiety of patients in the mindfulness intervention group was significantly reduced by (standard mean difference (SMD) = -0.73, 95% confidence interval (CI): -1.01 to -0.45) compared to the control group. 8 studies showed that the intervention group significantly reduced patients' depression (SMD = -0.60, 95% CI: -0.78 to -0.42). 7 studies showed that the patient's quality of life improved after mindfulness intervention (SMD = 0.66, 95% CI: 0.45-0.87). CONCLUSION: Mindfulness-based intervention training can improve anxiety, depression, and quality of life in patients with inflammatory bowel disease in the short term, but the long-term effects need to be confirmed by more randomized controlled trials.
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Ansiedade , Depressão , Doenças Inflamatórias Intestinais , Atenção Plena , Qualidade de Vida , Humanos , Atenção Plena/métodos , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/terapia , Depressão/terapia , Ansiedade/terapiaRESUMO
BACKGROUND: Inflammatory bowel disease (IBD), represented by Crohn's disease (CD) and ulcerative colitis (UC), is a chronic condition that affects all age groups, predominantly in young individuals. Currently, an increase in the prevalence of IBD has been documented, in parallel with the increase in the elderly population. The scarce number of studies that better characterize the impact of IBD on Quality of Life (QoL) in the elderly motivated the present study. OBJECTIVE: To evaluate the impact of IBD on the QoL of elderly people treated at a Tertiary IBD Center. METHODS: Prospective cross-sectional study that included elderly patients (age ≥60 years) with quiescent or mildly active IBD treated at the HU-UFJF IBD Center between March 2019 and December 2022. Elderly companions without severe comorbidities who attended the consultation with the patients were included as a control group. Sociodemographic and IBD-related characteristics were recorded. QoL was assessed using previously validated questionnaires (WHOQOL-BREF and IBDQ). Patients with IBD with moderate to severe activity, history of recent or imminent hospitalization, serious or opportunistic infections in the last 6 months, previous neoplasia, dementia, and difficulty understanding/fulfilling the questionnaires were excluded. RESULTS: A total of 123 patients were included (74 with IBD and 49 in the control group), with a mean age of 67±6.2 years, 52.7% with CD, and 47.3% with UC. Mild disease activity was observed in 31.1%. Both groups (IBD patients and control) were comparable based on age, sex, BMI, and the Charlson Comorbidity Index. Patients with IBD and controls had similar QoL scores in the different domains assessed by the WHOQOL-BREF. On the other hand, when evaluating the general facet of QoL, IBD patients had significantly lower scores in General QoL (3.71±0.87 versus 4.02±0.62, respectively; P=0.021) and General Health (3.32±1.05 versus 3.69±0.94, respectively; P=0.035). The presence of mildly active IBD negatively impacted the general health score (2.91±0.99 versus 3.47±1.04, respectively; P=0.035) and the physical domain of the WHOQOL-BREF (12.27±2.63 versus 13.86±2.61, respectively; P=0.019) when compared to patients in remission. Conversely, no impact on QoL was observed with the Application of the IBDQ questionnaire regarding the type of the disease (161±38.5 versus 163.1±42.6 for CD and UC, respectively; P=0.84) or the presence of activity (152.5±38.8 versus 166.4±40.5, respectively; P=0.17). CONCLUSION: No statistically significant differences were found between elderly patients with mildly active or quiescent IBD and elderly patients without IBD when observing global QoL scores. However, IBD negatively impacted the general facet of QoL, just as mild activity was associated with lower scores in general health and the physical domain assessed by the WHOQOL-BREF. Patients with IBD treated with biological therapy had better Qol than those on conventional therapy. Future studies are needed to choose the most appropriate tool for assessing QoL in this population.
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Qualidade de Vida , Índice de Gravidade de Doença , Humanos , Feminino , Masculino , Estudos Transversais , Idoso , Estudos Prospectivos , Pessoa de Meia-Idade , Inquéritos e Questionários , Colite Ulcerativa/psicologia , Colite Ulcerativa/complicações , Doença de Crohn/psicologia , Doença de Crohn/complicações , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/complicações , Estudos de Casos e Controles , Idoso de 80 Anos ou mais , Indução de RemissãoRESUMO
BACKGROUND: Process evaluations conducted alongside clinical trials can improve understanding of treatment fidelity and provide contextual knowledge to aide interpretations of trial outcomes. We adopted a multiple-goals perspective to investigate treatment fidelity in two related pilot clinical trials of an adjuvant treatment for pediatric-onset Inflammatory Bowel Disease. This included a focus on barriers and enablers of performing trial-specific activities and of integrating those activities into daily life. METHODS: We conducted one-time semi-structured interviews with a sub-sample of participants of the Resistant Starch in Pediatric Inflammatory Bowel Disease (NCT04522271) and Optimized Resistant Starch in Inflammatory Bowel Disease pilot trials (NCT04520594) and their caregivers (N = 42). The trials examined the effects of personalized food-derived resistant starches as an adjuvant therapy on intestinal microbiome functioning. Interviews were conducted within 3-months of participants completing or withdrawing from the trials. Interview guides with age-appropriate language were developed and pilot tested. Codes were identified inductively though conventional content analysis and then mapped to personal projects analysis, to explore how participants navigated between activities. RESULTS: Three themes were identified. The first described the potential impact of living with inflammatory bowel disease and taking prescribed medications. The second described characteristics of trial-specific activities that might impact on their enactment, including perceived difficulty, and challenges following procedures or using trial materials. The third described the integration of trial-specific activities with school, work, household demands, and social, and extracurricular activities. CONCLUSIONS: Adjusting to living with inflammatory bowel disease and managing its treatment can impact trial participation. Integrating trial-related activities into daily life can be challenging, which could heighten perceptions of goal conflict. Findings can inform interpretations of trial outcomes and development of strategies for trial optimization and implementation of the adjuvant therapy into clinical practice.
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Doenças Inflamatórias Intestinais , Adolescente , Criança , Feminino , Humanos , Masculino , Cuidadores/psicologia , Microbioma Gastrointestinal , Doenças Inflamatórias Intestinais/terapia , Doenças Inflamatórias Intestinais/psicologia , Projetos Piloto , Pesquisa Qualitativa , AmidoRESUMO
Quality of life (QoL) in patients with inflammatory bowel disease (IBD) is influenced by several factors, many of which may also impact cognitive function. However, the extent of the interaction among these factors, QoL, and disease outcomes in IBD patients remains unknown. We thus aim to characterize the relationships among psychological disorders, coping mechanisms, cognitive function, and the overall impact on QoL and disease outcomes in patients with IBD. This cross-sectional observational study was conducted at an academic care center. QoL was evaluated using the Short Inflammatory Bowel Disease Questionnaire (SIBDQ), and disease severity was evaluated using the Harvey-Bradshaw Index (HBI) for Crohn's disease (CD) and the Simple Clinical Colitis Activity Index (SCCAI) for ulcerative colitis (UC). We also used the Hospital Anxiety and Depression scale (HADS). Regression models were used to test the associations among QoL, number of hospitalizations, disease severity, cognitive functioning (working memory [WM] and reaction time), and coping strategies while controlling for anxiety and depressive symptoms, age, and sex. This study included 41 patients (24 patients with CD and 17 with UC) whose mean age was 28.2 (±8.4) years (23 males) and mean SIBDQ score was 51.5 (±10.0). Patients with more WM errors had lower QoL scores (Pâ =â .041), whereas patients with higher anxiety levels had lower QoL and more active UC (Pâ =â .008 and Pâ =â .016, respectively). The use of avoidant coping mechanisms was associated with a significantly higher number of hospitalizations (Pâ =â .038), and patients who adopted more emotion-focused coping strategies had a longer illness duration (Pâ =â .021). Finally, patients with higher education levels were found to use more active coping mechanisms than others. These results confirm the impact of cognitive, psychological, and coping factors on QoL and disease outcomes in patients with IBD; however, the mechanisms by which these factors interrelate remain unclear. Therapies aimed at improving both cognitive functions and psychological conditions may thus be effective at improving QoL and disease outcomes in IBD patients, and education may play a positive role in promoting the adoption of more effective coping strategies among IBD patients.
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Adaptação Psicológica , Cognição , Doenças Inflamatórias Intestinais , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Masculino , Feminino , Estudos Transversais , Adulto , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/complicações , Índice de Gravidade de Doença , Colite Ulcerativa/psicologia , Colite Ulcerativa/terapia , Doença de Crohn/psicologia , Doença de Crohn/complicações , Doença de Crohn/terapia , Adulto Jovem , Depressão/psicologia , Depressão/etiologia , Inquéritos e Questionários , Transtornos Mentais/psicologia , Ansiedade/psicologia , Ansiedade/etiologia , Capacidades de EnfrentamentoRESUMO
BACKGROUND: Treatment of chronic inflammatory bowel disease (IBD) aims to improve patients' quality of life and the extent of treatment success is measured via patient reported outcomes (PROs). However, questionnaires used to collect PROs often include scales that are not specific to IBDs. Improving these scales requires a deeper understanding of patients' lived experience. With this study we give first insights and develop hypotheses on how patients with IBDs experience their body and self and how they adjust their life plans in the context of precision medicine (PM). The guiding question is to understand what they need to achieve a good life, while facing their disease. METHODS: We developed a conception of the "good life" that draws on Philippa Foot's "naturalized" approach and distinguishes six different dimensions that are relevant for a good life. This conception guided us as we conducted 10 qualitative interviews with patients suffering from IBD who were in precision medicine clinical research settings. The interviews aimed to gain insights for answering our research question: How do body experiences affect the good life of patients with IBD? We analyzed the interviews with interpretative phenomenological analysis (IPA). RESULTS: Five group experiential themes emerged: (i) Life options and plans, (ii) other people's responses, (iii) strategies to deal with others' responses, (iv) perception of the body and self, and (v) perception of life as good despite suffering. We report here on three of them (i, iv and v), which are primarily relevant for evaluating the outcomes of PM care. Whereas with "life options and plans (i)," our study predominantly confirmed previous research, with "perception of the body and self (iv)," we found that some of the patients changed their relationship to their body and themselves. They perceived the body or the disease as the "other" and their self appears divorced from their own body. Although this might be an avoidance strategy patients use to assign responsibility for their condition and its "disgusting" symptoms to the "other," it is important to include it in patient reported outcome (PRO) assessments. CONCLUSIONS: We conclude with the insight that the multi-dimensional approach based on Foot's concept of a good life is well-suited as a basis for investigating the quality of life of people with IBD. Interviews based on this concept produced results that go beyond the understanding of health-related quality of life (HRQoL). Additionally, we offer some considerations about patients' opportunities for achieving a good life and suggestions for further developing patient reported outcome scales.
Assuntos
Doenças Inflamatórias Intestinais , Qualidade de Vida , Humanos , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/terapia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Pesquisa Qualitativa , Autoimagem , Medicina de Precisão , Imagem Corporal , Doença Crônica , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários , IdosoRESUMO
PURPOSE: The purpose of this study was to determine predictors of health-related quality of life (HRQOL) in persons aged 18 to 40 years living with inflammatory bowel disease (IBD) and a fecal ostomy. DESIGN: Descriptive cross-sectional study. SUBJECTS AND SETTING: The sample comprised 98 participants recruited from online discussion boards/support groups for individuals living with IBD and an intestinal ostomy. More than three-quarters (76.5%) were female; 45.9% (n = 44) had lived with an ostomy for 2 years or less. Data were collected through an online survey made available from October 2018 to December 2018. METHODS: HRQOL was measured using the Healthy Days Core Module (Centers for Disease Control and Prevention HRQOL-4). Item 1 from the CDC HRQOL-4 represented the variable self-rated health (SRH). The subscales of bodily pain, general mental health, and vitality from the Short-Form 36 Health Survey and the subscales of ostomy function and body image/sexuality plus skin irritation item from the Young-Fadok Stoma Quality of Life (QOL) Scale were used to measure predictors of pain, psychological distress, fatigue, peristomal skin irritation, leakage of ostomy appliance, and body image/sexual disturbance. Correlational and hierarchical multiple linear regression analyses were conducted to complete hypotheses testing. RESULTS: Significant correlations were found between pain, fatigue, peristomal skin problems, psychological distress, SRH, and HRQOL. Pain, fatigue, psychological distress, and self-related health explained 53.2% of the variance in HRQOL based on hierarchical multiple linear regression and controlling for demographic variables such as marital and employment status. CONCLUSIONS: Findings suggest global disease symptoms of IBD in the form of pain, fatigue, and psychological distress and individual perception of health (SRH) are more important than transient ostomy symptoms of peristomal skin complications and leakage of ostomy appliance in predicting HRQOL. Individuals in this population regularly use online resources indicating a need to understand and gain insight into the information posted online in the management of the fecal ostomy and IBD.
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Doenças Inflamatórias Intestinais , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Feminino , Masculino , Estudos Transversais , Adulto , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/cirurgia , Doenças Inflamatórias Intestinais/complicações , Adolescente , Inquéritos e Questionários , Estomia/psicologia , Estomia/efeitos adversos , Estomia/métodosRESUMO
OBJECTIVE: This study aimed to explore the effect of ward-noise-reduction management on the mental health and quality of life of patients with inflammatory bowel disease. METHODS: The medical records of 275 patients with inflammatory bowel disease admitted to the First Affiliated Hospital of Wenzhou Medical University from January 2020 to January 2023 were retrospectively analyzed. Routine care was performed for such hospitalized patients from January 2020 to July 2021. Thus, 124 patients were enrolled in the control group. From August 2021 to January 2023, our hospital implemented ward-noise-reduction management for such inpatients, and 151 patients were included in the observation group. The Athens Insomnia Scale (AIS), the State-Trait Anxiety Inventory, the Inflammatory Bowel Disease Questionnaire (IBDQ), and the noise level at the time of admission and discharge were compared. RESULTS: No significant difference in the State Anxiety Scale (S-AI), Trait Anxiety Scale (T-AI), and AIS and IBDQ scores at baseline existed between the two groups (P > 0.05). After nursing, the S-AI, T-AI, and AIS scores of the observation group were lower than those of the control group, and the IBDQ score of the observation group was higher than that of the control group (P < 0.05). The noise level of the observation group was lower than that of the control group during hospitalization in maximum sound level and average intermediate (P < 0.05). CONCLUSIONS: The application of ward-noise-reduction management in the nursing of patients with inflammatory bowel disease can improve their negative mood, improve their sleep quality, and quality of life, and reduce the ward noise level in maximum sound level and average intermediate, which has high clinical value.
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Doenças Inflamatórias Intestinais , Ruído , Qualidade de Vida , Humanos , Feminino , Masculino , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/terapia , Adulto , Estudos Retrospectivos , Pessoa de Meia-Idade , Ansiedade/prevenção & controle , Ansiedade/etiologia , Saúde Mental , Inquéritos e QuestionáriosRESUMO
PURPOSE: Iron deficiency anemia is common in people with inflammatory bowel disease (IBD), causing deterioration in quality of life, which can be reversed by treatment that increases iron stores and hemoglobin levels. The present post hoc analyses estimate health state utility values for patients with IBD after treatment with ferric derisomaltose or ferric carboxymaltose and evaluate the health domains driving the changes. METHODS: SF-36v2 responses were recorded at baseline and day 14, 35, 49, and 70 from 97 patients enrolled in the randomized, double-blind, PHOSPHARE-IBD trial (ClinicalTrials.gov ID: NCT03466983), in which patients with IBD across five European countries were randomly allocated to either ferric derisomaltose or ferric carboxymaltose. Changes in SF-36v2 scale scores and SF-6Dv2 health utility values were analyzed by mixed models. RESULTS: In both treatment arms, SF-6Dv2 utility values and all SF-36v2 scale scores, except Bodily Pain, improved significantly (p = < 0.0001). The improvement in SF-6Dv2 utility values showed no significant treatment group difference. The improvement in utility values was completely explained by improvement in Vitality scores. Vitality scores showed significantly larger improvement with ferric derisomaltose versus ferric carboxymaltose (p = 0.026). Patients with the smallest decrease in phosphate had significantly larger improvements in Vitality scores at each time point (p = < 0.05 for all comparisons) and overall (p = 0.0006). CONCLUSIONS: Utility values improved significantly with intravenous iron treatment. Improvement in utility values was primarily driven by Vitality scores, which showed significantly greater improvement in the ferric derisomaltose arm. Smaller decreases in phosphate were associated with significantly higher Vitality scores, suggesting that quality of life improvement is attenuated by hypophosphatemia. The utility values can inform future cost-utility analysis.
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Anemia Ferropriva , Compostos Férricos , Hipofosfatemia , Doenças Inflamatórias Intestinais , Qualidade de Vida , Humanos , Masculino , Feminino , Método Duplo-Cego , Adulto , Pessoa de Meia-Idade , Compostos Férricos/administração & dosagem , Compostos Férricos/uso terapêutico , Anemia Ferropriva/tratamento farmacológico , Doenças Inflamatórias Intestinais/tratamento farmacológico , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/psicologia , Hipofosfatemia/tratamento farmacológico , Maltose/análogos & derivados , Maltose/administração & dosagem , Maltose/uso terapêutico , Administração Intravenosa , Europa (Continente)RESUMO
BACKGROUND: Patients with inflammatory bowel disease (IBD) experience difficulties in daily life and demanding self-care needs. The goal of our support for patients is to ease their difficulties and improve their belief in their capacity to self-manage their disease (self-efficacy), by increasing their ability for self-care. The nurse's contribution is vital in empowering patients and supporting them to better manage their disease. There is evidence that higher nurse staffing levels are associated with better patient outcomes in acute care settings, but little is known about the outpatient setting. The objective of this study was to explore the impact of multidisciplinary team care with abundant nurse staffing levels on patient-reported outcome measures (PROMs) among patients with IBD, encompassing Crohn's disease (CD) and ulcerative colitis (UC), in clinical remission. METHODS: Patients with IBD in clinical remission were included because disease activity influences the patient's subjective evaluation. A total of 499 valid responses from two different sources were analyzed: 318 from a specialized IBD clinic with abundant nurse staffing and a multidisciplinary care team (UC: 83, CD: 235) and 181 from an online survey panel (UC: 109, CD: 72). The IBD Self-Efficacy Scale (IBD-SES) and the difficulty of life scale (DLS) were used as disease-specific PROMs. RESULTS: In two multiple regression models adjusted by background characteristics (age, sex, diagnosis [UC/CD], employment status, use of biologics, and disease duration) using the IBD-SES or DLS as a dependent variable, the responses from clinic patients showed a more favorable score (higher self-efficacy or lower difficulty) than the online responses. CONCLUSIONS: Multidisciplinary team care with abundant nurse staffing may improve self-efficacy and ease difficulties of life among patients with IBD in clinical remission. These results could help bring attention to nurse staffing in an outpatient setting, which has previously been overlooked, and be the first to provide evidence of its importance in encouraging enhanced staffing levels.
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Doenças Inflamatórias Intestinais , Equipe de Assistência ao Paciente , Medidas de Resultados Relatados pelo Paciente , Humanos , Feminino , Masculino , Adulto , Equipe de Assistência ao Paciente/organização & administração , Pessoa de Meia-Idade , Doenças Inflamatórias Intestinais/terapia , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/enfermagem , Inquéritos e Questionários , Autoeficácia , Qualidade de Vida , Colite Ulcerativa/terapia , Doença de Crohn/terapia , Doença de Crohn/psicologia , Admissão e Escalonamento de PessoalRESUMO
OBJECTIVES: Inflammatory bowel disease (IBD) is a chronic, gastrointestinal tract condition, in which pain is one of the most widespread and debilitating symptoms, yet research about how individuals make sense of their IBD pain is lacking. The current study aimed to explore how individuals with IBD understand their pain. METHODS: Twenty participants, recruited via the Crohn's & Colitis UK charity, were interviewed about their understanding of their IBD pain using the Grid Elaboration Method that elicits free associations on which it invites elaboration. Thematic analysis was used to organise transcribed verbatim data. RESULTS: Three related themes - making sense of my pain, navigating my care and support and it takes its toll - comprising seven sub-themes, illustrated the ways in which participants made sense of pain experientially, multi-dimensionally, and in the broader context of IBD and its symptoms. The psychological impact of pain was evident across all interviews. CONCLUSIONS: The findings are consistent with other research in IBD pain, demonstrating the importance of pain in IBD. Sense-making underpins both emotional and practical responses to pain and ideally is constructed as an integral part of clinical care of IBD.
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Doenças Inflamatórias Intestinais , Pesquisa Qualitativa , Humanos , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/complicações , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Dor/psicologia , Idoso , Adulto JovemRESUMO
INTRODUCTION: Diet is thought to play an important role in the clinical course and quality of life (QOL) of patients with inflammatory bowel disease (IBD). However, dietary habits of patients with IBD are still unknown. This case-control study aims to compare the dietary habits of patients with IBD to healthy controls and evaluate differences in disease severity and QOL. MATERIALS AND METHODS: Food frequency, severity scores using the Harvey-Bradshaw and Ulcerative colitis activity index, and QOL were assessed using online questionnaires. Dietary habits were compared for patients with active disease and remission and for those with low QOL (LQOL) and high QOL (HQOL). RESULTS: We recruited 61 patients with IBD and 101 controls. Significance was set at p = 0.05. Controls consumed significantly more daily calories (2546 vs. 1641, p = 0.001). However, patients with IBD consumed a higher percentage of carbohydrates (50% vs. 45%, p = 0.001), more red meat (p = 0.024), and less fiber, sucrose, and lactose (p = 0.001, 0.001, and 0.036). Patients with active disease had higher lipid intake, lower protein intake, and lower QOL (47 vs. 58, p = 0.001). Dietary differences between LQOL and HQOL mirrored those between active disease and remission. CONCLUSION: This study is the first to provide valuable insights into the nutritional profile of Lebanese patients with IBD.
Assuntos
Dieta , Doenças Inflamatórias Intestinais , Estado Nutricional , Qualidade de Vida , Índice de Gravidade de Doença , Humanos , Estudos de Casos e Controles , Masculino , Feminino , Adulto , Doenças Inflamatórias Intestinais/psicologia , Pessoa de Meia-Idade , Comportamento Alimentar/psicologia , Inquéritos e Questionários , Colite Ulcerativa/psicologia , Ingestão de Energia , Adulto JovemRESUMO
Background: With the COVID-19 pandemic going to be COVID-19 endemic, the negative impact of COVID-19 on the mental health of IBD patients cannot be ignored. This study aimed to investigate the occurrence of anxiety and depression in IBD patients during the COVID-19 pandemic and analyze the factors associated with mental health. Methods: Patients registered at the IBD center were enrolled. Electronic questionnaires about the IBD patient's demographic information, basic knowledge of COVID-19, public self-prevention measures, daily life changes, and anxiety and depression were distributed. Results: Two hundred and fifteen IBD patients finished this study and reported to have anxiety (27%) or depression (34%). During the COVID-19 pandemic, 10.2% of IBD patients reported their diet changes, 58.5% of IBD patients changed their daily physical activities from 3.27 ± 3.252 h to 2.30 ± 2.78 h, 33.7% of IBD patients changed their sleeping duration from 7.99 ± 1.322 h to 8.18 ± 1.447 h. IBD patients' waiting time for admission (OR: 3.688, 95%CI: 1.003-13.554), regularly oral medicine administration (OR: 18.407, 95%CI: 1.975-171.530) and diet changes (OR: 6.167, 95%CI: 2.158-17.626) were positively correlated with anxiety or depression. IBD patients' timely periodic infusion of biological agents (OR: 0.586, 95%CI: 0.413-0.830) was negatively correlated with anxiety or depression. IBD patients' knowledge of COVID-19, public self-prevention, physical activities, and sleep duration changes showed no significant correlation with anxiety and depression, all p values > 0.05. Conclusion: The main factors of IBD patients' mental health were diet changes, waiting time for admission, taking oral medicine regularly, and timely periodic infusions of biological agents. Ensuring the supply of routine treatment and medication for IBD patients and establishing systemic online IBD self-management programs would be the focus of major public health events.
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Ansiedade , COVID-19 , Depressão , Conhecimentos, Atitudes e Prática em Saúde , Doenças Inflamatórias Intestinais , Saúde Mental , Humanos , COVID-19/psicologia , COVID-19/epidemiologia , COVID-19/prevenção & controle , Masculino , Feminino , Estudos Transversais , Adulto , Doenças Inflamatórias Intestinais/psicologia , Pessoa de Meia-Idade , Depressão/epidemiologia , Depressão/psicologia , Ansiedade/epidemiologia , Inquéritos e Questionários , Saúde Mental/estatística & dados numéricos , SARS-CoV-2 , PandemiasRESUMO
BACKGROUND: Psychological interventions are a promising area for fatigue management in patients with inflammatory bowel disease (IBD). However, most interventions trialled to date have been pilots with limited direct input from patients about the type of intervention they want. Thus, this study aimed to explore patient preferences for a psychological IBD fatigue intervention. METHODS: An international online cross-sectional survey was conducted with adults with self-reported IBD. A conjoint analysis was employed to elicit, through a series of forced-choice scenarios, patient preferences for a fatigue intervention. For this study, the attributes manipulated across these forced-choice scenarios were type of intervention, modality of delivery, and duration of intervention. RESULTS: Overall, 834 people with IBD were included in analysis. Respondents ranked the type of psychological intervention as most important for overall preference (with cognitive-behavioral therapy (CBT) preferred over the other approaches), followed by modality of delivery, but placed very little importance on how long the intervention runs for. Patients with IBD appear to most strongly preference a short online CBT intervention for managing their IBD-related fatigue. CONCLUSION: This study helps provide therapists and program developers clear direction on patient preferences when it comes to developing new psychological programs that address fatigue in IBD.
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Terapia Cognitivo-Comportamental , Fadiga , Doenças Inflamatórias Intestinais , Preferência do Paciente , Humanos , Feminino , Masculino , Adulto , Fadiga/terapia , Fadiga/etiologia , Fadiga/psicologia , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/terapia , Doenças Inflamatórias Intestinais/complicações , Terapia Cognitivo-Comportamental/métodos , Estudos Transversais , Pessoa de Meia-Idade , Adulto Jovem , Inquéritos e Questionários , IdosoRESUMO
IMPACT-III and IMPACT-III-P are health-related quality of life (HRQoL) questionnaires for patients with pediatric inflammatory bowel disease (p-IBD) and their parents/caregivers. We aimed to perform a transcultural adaptation and validation for the Spanish context. Translation, back-translation, and evaluation of the questionnaires were performed by an expert committee and 12 p-IBD families. We recruited p-IBD patients aged 10-17 and their parents/caregivers. Utility, content, and face validity were considered. Validation was performed with Cronbach's alpha coefficient and varimax rotation. We confirmed the adequacy of the factor analysis using Kaiser-Meyer-Olkin (KMO) and Bartlett's sphericity tests. A confirmatory factor analysis was performed using the following goodness indexes: chi-square, Normed Fit Index (NFI), Root Mean Square Error of Approximation index (RMSEA), Standardized Root Mean Square Residual (SRMR), and Comparative Fit Index (CFI). The correlation coefficient between IMPACT-III and IMPACT-III-P was analyzed. We included 370 patients and 356 parents/caregivers (37 hospitals). Both questionnaires had good content and face validity and were considered user-friendly. The KMO measure (0.8998 and 0.9228, respectively) and Bartlett's sphericity test (p-value < 0.001 for both) confirmed the adequacy of the factor analysis. The 4-factor model, complying with Kaiser's criterion, explained 89.19% and 88.87% of the variance. Cronbach's alpha (0.9123 and 0.9383) indicated excellent internal consistency. The CFA showed an adequate fit (NFI 0.941 and 0.918, RMSEA 0.048 and 0.053, SRMR 0.037 and 0.044, and CFI 0.879 and 0.913). The correlation coefficient was excellent (0.92). CONCLUSION: The SEGHNP versions of IMPACT-III and IMPACT-III-P are valid and reliable instruments for Spanish p-IBD families. WHAT IS KNOWN: ⢠IMPACT-III and parent-proxy IMPACT-III (IMPACT-III-P) are useful questionnaires for assessing health-related quality of life (HRQoL) in pediatric inflammatory bowel disease (p-IBD) patients and their parents/caregivers and have been translated and validated in several countries. ⢠To date, no transcultural adaptation and validation of these questionnaires have been published for Spanish patients with p-IBD and their families. WHAT IS NEW: ⢠This is the first transcultural adaptation and validation of IMPACT-III and IMPACT-III-P for Spanish p-IBD families. ⢠These are valid and reliable instruments for assessing HRQoL in Spanish families of patients with p-IBD.
Assuntos
Doenças Inflamatórias Intestinais , Pais , Psicometria , Qualidade de Vida , Traduções , Humanos , Masculino , Feminino , Criança , Adolescente , Espanha , Inquéritos e Questionários , Reprodutibilidade dos Testes , Doenças Inflamatórias Intestinais/psicologia , Pais/psicologia , Cuidadores/psicologia , Análise FatorialRESUMO
Despite advancements in medication,managing inflammatory bowel disease (IBD) remains challenging, necessitatingalternative control methods. Gut-directed hypnotherapy, known for alleviating irritable bowel syndrome (IBS), is debated as an IBD management method. Anextensive search across PubMed, Cochrane Library, and Clinicaltrials.govuncovered five randomized trials and two case series involving IBD patients undergoing hypnotherapy. A small trial reported statistically significant remission at one year (p = .04), but larger trials, including one with 63 patients, showed no significant gastrointestinal improvements. The first case series noted post-intervention reduction in the mediators of inflammation in rectal mucosal, without long-term monitoring. The second case series observed the absence of flare episodes in 12 of 13 ulcerative colitis patients during follow-up, possibly influenced by the simultaneous use of two drugs alongside hypnotherapy. Psychological outcomes, demonstrated no significant differences between hypnotherapy and control groups. While current literature doesn't decisively support hypnotherapy for managing IBD symptoms, it underscores the importance of further research, including randomized clinical trials, to thoroughly assess its effectiveness in this context.
Assuntos
Hipnose , Doenças Inflamatórias Intestinais , Hipnose/métodos , Humanos , Doenças Inflamatórias Intestinais/terapia , Doenças Inflamatórias Intestinais/psicologiaRESUMO
BACKGROUND: Providing relevant digital health information of high quality may promote treatment adherence and self-management for patients with inflammatory bowel disease. The development of digital health services is optimised by considering end users' needs. AIM: To identify key aspects required for digital promotion of inflammatory bowel disease patients' self-management by exploring their health information needs and the preferences of both patients and healthcare professionals in relation to the digital provision of inflammatory bowel disease health services. METHODS: Data from an audit of 1,481 electronic health record summaries from an inflammatory bowel disease help line, 17 semi-structured interviews with inflammatory bowel disease patients and 2 focus group interviews with 11 healthcare professionals were analysed. RESULTS: Patients primarily contacted the hospital due to concerns about symptoms, examinations and tests, and medicines. Their concerns appeared to vary according to diagnosis, gender, age and disease duration. The interviews identified two overarching themes: (1) the available health information and patients' health information needs, and (2) whishes, thoughts and preferences for a digital solution in IBD care with relevant and individualised information. CONCLUSIONS: The findings delineate key aspects for developing a suitable digital health information service. Patients seek information from healthcare professionals about treatment; however, in a digital solution, they want access to relevant and practical information about the disease, treatment and self-management. Both patients and healthcare professionals saw opportunities for increasing health data availability to patients. However, healthcare professionals expressed concerns about adapting, maintaining and ensuring the relevance of patient health information without increasing their workload and, thus, reducing quality of care.
Assuntos
Grupos Focais , Doenças Inflamatórias Intestinais , Humanos , Masculino , Feminino , Doenças Inflamatórias Intestinais/terapia , Doenças Inflamatórias Intestinais/psicologia , Pessoa de Meia-Idade , Adulto , Registros Eletrônicos de Saúde , Autogestão/métodos , Idoso , Telemedicina , Adulto Jovem , Educação de Pacientes como Assunto , Preferência do Paciente , Saúde DigitalRESUMO
Psychosocial factors play an important role in the disease course and illness experience of patients with inflammatory bowel disease (IBD). Consultation with a health psychologist is an important component of care for many IBD patients and provides an opportunity to identify areas of psychosocial concern, recognize coping deficits and strengths, and facilitate treatment recommendations. Psychosocial assessment in IBD requires a nuanced approach that goes beyond general mental health screening and considers the disease-specific concerns that impact patients. In this paper, we outline strategies for an IBD-focused psychological evaluation, including specific guidance for assessing disease-specific concerns of anxiety, depression, post-traumatic stress, sleep, pain, body image disturbance, food-related quality of life, and psychological resilience.
Assuntos
Doenças Inflamatórias Intestinais , Humanos , Doenças Inflamatórias Intestinais/psicologia , Qualidade de Vida/psicologia , Adaptação Psicológica , Planejamento de Assistência ao PacienteRESUMO
BACKGROUND: The research on posttraumatic growth (PTG) promotion programmes, particularly narrative therapy (NT), for patients with inflammatory bowel disease (IBD) remains limited. This pilot study aims to develop an NT programme to promote PTG and evaluate its feasibility, preliminary effectiveness, participants' experiences and improvement suggestions. METHODS: The NT programme was initially developed through literature review, interviews with IBD patients and expert panel discussions. A randomized controlled pilot trial was conducted to assess the feasibility and preliminary effectiveness of the programme. Participants in the NT group received five consecutive weekly sessions of the programme, while the control group received standard care. Outcomes including PTG, anxiety, depression and quality of life were measured. Qualitative interviews were conducted to explore participants' experiences and suggestions for programme modifications. RESULTS: The NT programme was developed with scientific rigour. The recruitment rate and retention rate were 62.5% and 96.7%, respectively. A significant reduction in anxiety levels was observed, and manifestations of PTG were reported in the NT group. Suggestions for improvement of the NT programme were received from the participants. CONCLUSION: The NT programme was constructed to promote PTG in IBD patients in this study, further offering preliminary evidence for its feasibility and potential positive psychological change. However, large-scale research is needed to validate its effectiveness for broader applications.
Assuntos
Doenças Inflamatórias Intestinais , Terapia Narrativa , Crescimento Psicológico Pós-Traumático , Humanos , Projetos Piloto , Masculino , Feminino , Adulto , Terapia Narrativa/métodos , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/terapia , Pessoa de Meia-Idade , China , Estudos de Viabilidade , Qualidade de Vida/psicologia , Resultado do Tratamento , População do Leste AsiáticoRESUMO
BACKGROUND: Inflammatory bowel disease (IBD) is a chronic gastrointestinal condition. While inflammatory biomarkers are valuable for diagnosing and monitoring the disease, their correlation with patients' quality of life (QoL) is not well-established. PURPOSE: This study aims to investigate the correlations between inflammatory biomarkers and the quality of life (QoL) variables of individuals diagnosed with IBD in clinical remission. METHODS: The sample of this cross-sectional study included 74 patients (80% women; 45 ± 11 years old) diagnosed with IBD. Outcome variables included faecal calprotectin (FC), C-reactive protein (CRP), cortisol levels from hair samples, and anxiety and depression assessed using the Hospital Anxiety and Depression Scale (HADS-A and HADS-D, respectively), alongside QoL evaluated with the Inflammatory Bowel Disease Questionnaire 32 (IBDQ-32). Bivariate correlations were calculated using the Pearson correlation coefficient, and stepwise linear regression analyses were conducted to identify independent factors contributing to IBDQ-32 scores. RESULTS: The IBDQ-32 did not significantly correlate with any biomarkers. However, it exhibited a large and statistically significant negative correlation with HADS-A (r = -0.651) and HADS-D (r = -0.611) scores (p < 0.001). Stepwise linear regression analyses indicated that HADS-A was a significant and independent predictor for IBDQ-32 scores (Adjusted R2 = 0.41, ß = -0.65, p < 0.001). CONCLUSIONS: Inflammatory markers such as CRP, FC, or cortisol in hair do not play a decisive role in assessing the QoL of IBD patients. These findings emphasize the significance of considering psychological factors in evaluating and managing QoL in IBD patients in order to identify severity, suggesting that instruments like HADS should be integral to comprehensive patient assessments.
Assuntos
Ansiedade , Biomarcadores , Proteína C-Reativa , Depressão , Fezes , Cabelo , Hidrocortisona , Doenças Inflamatórias Intestinais , Complexo Antígeno L1 Leucocitário , Qualidade de Vida , Humanos , Feminino , Estudos Transversais , Masculino , Pessoa de Meia-Idade , Biomarcadores/análise , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/metabolismo , Adulto , Proteína C-Reativa/análise , Proteína C-Reativa/metabolismo , Complexo Antígeno L1 Leucocitário/análise , Hidrocortisona/metabolismo , Hidrocortisona/análise , Fezes/química , Ansiedade/diagnóstico , Ansiedade/psicologia , Cabelo/química , Depressão/diagnóstico , Depressão/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: The inflammatory bowel disease self-efficacy scale (IBD-SES) is an instrument used across many countries to measure important health outcomes of patients with inflammatory bowel disease (IBD). We aimed to develop and validate a substantially shorter version of this scale to reduce patients' response burden. METHODS: A total of 919 patients with IBD, 482 recruited from an IBD clinic and 437 recruited online, completed the Japanese version of the original, 29-item IBD-SES. These data were then used to develop a shorter version of the scale. The original 29 items of the IBD-SES were reduced with three analytic steps: assessing ceiling and floor effect, testing correlation between items, and assessing test-retest reliability. The resulting 13-item IBD-SES was evaluated for construct validity by confirmatory factor analysis, criterion validity by Pearson correlation coefficients with original version, and internal consistency by item-total correlations and the Cronbach's α coefficient. RESULTS: The short version consisted of the same four subscales "managing stress and emotions," "managing medical care," "managing symptoms and disease," and "maintaining remission" as the original scale. The fit indices of the final model were as follows: normed chi-square, 7.18 (p < 0.001); comparative fit index, 0.94; goodness-of-fit index, 0.93; adjusted goodness-of-fit index, 0.89; parsimony goodness-of-fit index, 0.60; and root mean square error of approximation, 0.084. Correlation of each subscale with the original scale was high (0.97-0.98). Cronbach's α for each subscale ranged from 0.68 to 0.86. CONCLUSIONS: A short version of the IBD-SES was developed. The results confirmed the improved validity, reliability, and psychometric properties of the IBD-SES. TRIAL REGISTRATION: Not applicable.