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1.
Rehabilitation (Stuttg) ; 60(1): 29-36, 2021 Feb.
Artigo em Alemão | MEDLINE | ID: mdl-33152779

RESUMO

PURPOSE: Patients with inflammatory bowel diseases (IBD) are often impaired in their occupational participation and ability to work due to IBD-symptoms and complex psychosocial problems. The aim was to explore work-related problems and requested support of IBD-patients and to develop adequate occupational-oriented offers in rehabilitation with a multi-perspective approach. METHODS: Guided interviews with employed IBD-patients in medical rehabilitation at 2 measurement points (N=12), guided interviews with employed IBD-patients in specialist gastroenterological care (N=7), 4 focus group interviews with rehabilitation staff (N=27) and expert interviews (N=8) were conducted. The qualitative data have been examined in MAXQDA using content-structuring qualitative content analysis. RESULTS: The 4 different interview groups report a similar spectrum of work-related problems and describe various somatic and psychosocial impairments in the working life of IBD-patients. Physical as well as cognitive impairments, fatigue, pain and psychosocial barriers, which are often associated with reduced productivity at work, are described. Additional restrictions result from unhealthy behaviour at work. The results show an increased need for rehabilitative occupational-oriented offers. IBD patients want a more work-related orientation of rehabilitative offers. They ask for competence-promoting offers to develop specific working skills and coping strategies to maintain their ability to work. CONCLUSION: The results highlight the range of work-related problems of IBD-patients and show occupational-oriented support opportunities and potentials in rehabilitation sector. Medical rehabilitation must be more tailored to the needs of working IBD-patients and should be more focused on health-related challenges at work. A stronger occupational focus, standardised screening for work-related problems and a competence-promoting orientation of IBD-rehabilitation could enhance the spectrum of rehabilitation offers and maintain the ability to work.


Assuntos
Adaptação Psicológica , Eficiência , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/reabilitação , Qualidade de Vida/psicologia , Adulto , Disfunção Cognitiva/complicações , Fadiga/complicações , Grupos Focais , Alemanha , Humanos , Doenças Inflamatórias Intestinais/diagnóstico , Dor , Pesquisa Qualitativa , Inquéritos e Questionários , Desempenho Profissional
2.
Saudi J Gastroenterol ; 26(5): 256-262, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32415045

RESUMO

Background/Aim: Inflammatory bowel disease (IBD) is a chronic disorder affecting patients' health-related quality of life (HRQoL) which adds to their disability. Little is known about the impact of the COVID-19 pandemic on HRQoL of IBD patients. We aimed to evaluate HRQoL in IBD patient's pre- and post-COVID-19 pandemic using the IBD-disk questionnaire and explore associations between socio demographic factors, disease types, severity and impaired HRQoL in patients with IBD. Patients and Methods: A cross-sectional study was conducted at a tertiary care centre in Saudi Arabia between November 2019 and March 2020 at the outpatient IBD clinics. The HRQoL of patients was assessed using the 10-item IBD-disk questionnaire. Results: A total of 59 IBD patients (40 Crohn's disease, 19 Ulcerative colitis) with a mean disease duration of 3.5 years were included. Most of the patients (77.97%) were on biologics while 35.59% were on immune modulators, 16.94% on 5-ASA, and 3.38% were on corticosteroids. There was no difference between any of the 10 IBD-disk variables pre and post-COVID-19 pandemic apart from the perception of body image, where there was a slightly more negative perception with an increase from 2.53 to 3.39 (P = 0.05) There was no significant difference in HRQoL between patients with ulcerative colitis and Crohn's disease in any of domains. Conclusion: The current study showed that disability and HRQoL appears to be unaffected by the COVID-19 pandemic among our cohort, however further studies with longer follow up and larger sample size is needed.


Assuntos
Betacoronavirus , Infecções por Coronavirus/epidemiologia , Avaliação da Deficiência , Nível de Saúde , Doenças Inflamatórias Intestinais/reabilitação , Pandemias , Pneumonia Viral/epidemiologia , Qualidade de Vida , Adulto , COVID-19 , Comorbidade , Infecções por Coronavirus/reabilitação , Estudos Transversais , Feminino , Seguimentos , Humanos , Doenças Inflamatórias Intestinais/epidemiologia , Masculino , Pneumonia Viral/reabilitação , SARS-CoV-2 , Arábia Saudita/epidemiologia , Índice de Gravidade de Doença , Inquéritos e Questionários
3.
Dtsch Arztebl Int ; 117(6): 89-96, 2020 02 07.
Artigo em Inglês | MEDLINE | ID: mdl-32102728

RESUMO

BACKGROUND: The poor evidence base is a major problem for the German rehabilitation sector. This trial focused on testing the efficacy and benefit of inpatient medical rehabilitation compared to routine care in a single common entity, namely, chronic inflammatory bowel disease (IBD). METHODS: This pragmatic, multicenter, randomized controlled trial with a parallel group design included gainfully employed patients with IBD who were covered by one of four statutory health insurance providers. Patients in the intervention group were actively advised regarding options for rehabilitation and given support in applying for it; patients in the control group continued with the care they had been receiving before participation in the trial. The primary endpoint was social participation, and there were various secondary endpoints, including disease activity and sick days taken off from work. All parameters were assessed by questionnaire at the beginning of the trial and twelve months later. This was trial no. DRKS00009912 in the German clinical trials registry. RESULTS: In a complete case analysis, the intervention group (211 patients, of whom 112 underwent rehabilitation) did better than the control group (220 patients, of whom 15 underwent rehabilitation) in multiple respects. The reported limitation in social participation was reduced by 7.3 points in the intervention group and 2.9 points in the control group (p = 0.018; d = 0.23). Significant improvements were also seen in disease activity, vitality, health-related quality of life, and self-management, with effect sizes between 0.3 and 0.4. No benefit was seen in outcomes related to working capacity. Sensitivity analyses lent further support to the findings. CONCLUSION: Rehabilitation research can be conducted with individually randomized, controlled trials. The findings of this trial indicate the absolute effectiveness of ied rehabilitation for IBD patients, as well as its additional benefit compared to routine care.


Assuntos
Doenças Inflamatórias Intestinais/reabilitação , Doença Crônica , Alemanha , Humanos , Resultado do Tratamento
4.
Clin Transl Gastroenterol ; 10(11): e00094, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31770137

RESUMO

OBJECTIVES: Patient-reported outcomes such as quality of life are gaining importance in the assessment of patients suffering from inflammatory bowel disease (IBD). The association of objectively measured physical activity and quality of life in patients with IBD has not been studied in depth. To investigate the association of disease-specific quality of life and physical activity as well as clinical and biochemical disease activity in patients with IBD. METHODS: A total of 91 patients with IBD were stratified into 4 groups (Crohn's disease and ulcerative colitis, in remission and with moderate-severe activity, respectively) and evaluated in terms of disease-specific quality of life (Inflammatory Bowel Disease Questionnaire [IBDQ]), physical activity (accelerometry), body composition (bioelectrical impedance analysis), as well as clinical (Harvey-Bradshaw Index and Simple Clinical Colitis Activity Index) and biochemical (C-reactive protein and fecal calprotectin) parameters of disease activity. RESULTS: In patients with moderate-severe disease activity, the IBDQ was significantly lower as compared to patients in remission (Mann-Whitney U test and Kruskal-Wallis test, P < 0.001). The physical activity level was higher in remission than in active disease (Mann-Whitney U test, P < 0.05). The IBDQ was significantly correlated with the duration of strenuous physical activity per day (P = 0.029178, r = 0.235), skeletal muscle mass (P = 0.033829, r = 0.229), and biomarkers of inflammation (C-reactive protein: P < 0.005, r = -0.335 and fecal calprotectin: P < 0.005, r = -0.385). DISCUSSION: In this prospective, cross-sectional study, disease-specific quality of life was significantly associated with accelerometrically determined physical activity and disease activity in patients with IBD. This may be related to a reciprocal impact of these factors (DRKS00011370).


Assuntos
Exercício Físico/fisiologia , Doenças Inflamatórias Intestinais/reabilitação , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Dispositivos Eletrônicos Vestíveis , Adulto , Biomarcadores/metabolismo , Proteína C-Reativa/metabolismo , Estudos Transversais , Feminino , Seguimentos , Humanos , Doenças Inflamatórias Intestinais/metabolismo , Doenças Inflamatórias Intestinais/fisiopatologia , Complexo Antígeno L1 Leucocitário/metabolismo , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Inquéritos e Questionários , Adulto Jovem
5.
Scand J Gastroenterol ; 53(9): 1074-1078, 2018 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-30175636

RESUMO

BACKGROUND: Inflammatory bowel disease (IBD) has a substantial impact on patients health-related quality of life (HRQoL). In this study, we examined the impact of adaptation courses on HRQoL, psychological well-being, depression and number of sick-leave days of IBD patients. METHODS: The study recruited 142 IBD patients attending an adaptation course of 5-12 days. The courses were specially designed for IBD patients and included multidisciplinary information about IBD, peer support, group activities and encouragement for adequate physical exercise. The participants completed the study questionnaire at the beginning and the end of the course and after six and 12 months of follow-up. HRQoL was assessed with the generic 15-dimensional (15D) tool and depression with Beck's Depression Inventory (BDI). Utilization of health care services and work absenteeism was also assessed. Visual analog scales were used for assessing psychological functioning. RESULTS: 15D, BDI scores and scores describing psychological well-being were significantly better at the end of the course when compared to baseline (15D 0.82 vs. 0.84, p < .001; BDI 11.8 vs. 8.5, p < .001). Positive results were maintained during follow up. The percentage of patients receiving peer support rose from 32 to 70% and those with peer support had better HRQoL at the 12-month follow-up (p = .01). No significant change in health care utilization or number of sick-leave days was observed. CONCLUSION: Adaptation training appears to have a positive impact on the psychological well-being of IBD patients. Peer support appears to be an important factor.


Assuntos
Adaptação Psicológica , Doenças Inflamatórias Intestinais/reabilitação , Educação de Pacientes como Assunto/métodos , Qualidade de Vida , Licença Médica/estatística & dados numéricos , Absenteísmo , Adulto , Idoso , Feminino , Finlândia , Seguimentos , Humanos , Doenças Inflamatórias Intestinais/psicologia , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Apoio Social , Inquéritos e Questionários , Escala Visual Analógica , Adulto Jovem
6.
Inflamm Bowel Dis ; 24(12): 2543-2549, 2018 11 29.
Artigo em Inglês | MEDLINE | ID: mdl-29850914

RESUMO

10.1093/ibd/izy199_video1Video 1.Video 1. Watch now at https://academic.oup.com/asj/article-lookup/doi/10.1093/ibd/izy199izy199.video15790841578001.


Assuntos
Terapia por Exercício/métodos , Doenças Inflamatórias Intestinais/fisiopatologia , Doenças Inflamatórias Intestinais/reabilitação , Exercício Físico , Tolerância ao Exercício , Humanos , Fenômenos Fisiológicos Musculoesqueléticos , Qualidade de Vida
7.
Patient Educ Couns ; 101(9): 1630-1638, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-29627267

RESUMO

OBJECTIVE: To evaluate generic self-management modules (SelMa) as an adjunct to disease-specific educational programs during inpatient medical rehabilitation. METHODS: A bi-center cluster-randomized controlled trial with 698 patients with coronary artery disease, metabolic syndrome, or inflammatory bowel disease was conducted. We compared two versions of SelMa, a group with 3 h or a lecture with 1 h, respectively, in addition to disease-related patient education, to usual care (only disease-related education). SelMa aims at providing skills that may help implementing health behavior. The primary outcomes were goal setting and behavior planning at discharge and goal attainment and health behavior at 6- and 12-months follow-up. Secondary outcomes included motivation, knowledge and self-management competences. RESULTS: At discharge, SelMa group, but not SelMa lecture, proved superior to usual care regarding goal setting (p = 0.007, d = 0.26), but not behavior planning (p = 0.37, d = 0.09). Significant effects were also observed on several secondary outcomes. At later follow-up, however, no effects on primary outcomes emerged. Participants' satisfaction was higher in the group than the lecture format. CONCLUSIONS: These short modules did not succeed in improving self-management skills in the long-term. PRACTICE IMPLICATIONS: A self-management group may foster self-management skills in short term. Interventions should be developed to increase sustainability of effects.


Assuntos
Doença da Artéria Coronariana/reabilitação , Doenças Inflamatórias Intestinais/reabilitação , Síndrome Metabólica/reabilitação , Educação de Pacientes como Assunto , Autogestão/educação , Idoso , Feminino , Alemanha , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde
8.
Eur J Health Econ ; 19(3): 463-470, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28523493

RESUMO

BACKGROUND: Inflammatory bowel disease (IBD) might have economic and social impacts in Brazil, where its prevalence has increased recently. This study aimed to assess disability due to IBD in the Brazilian population and demographic factors potentially associated with absence from work. METHODS: Analysis was performed using the computerized Single System of Social Security Benefits Information, with a cross-check for aid pension and disability retirement, for Crohn's disease (CD) and ulcerative colitis (UC). Additional data were obtained from the platform, including the average values, benefit duration, age, gender and region of the country. RESULTS: Temporary disability occurred more frequently with UC, whereas permanent disability was more frequent with CD. Temporary disability affected more younger patients with CD than patients with UC. Temporary work absences due to UC and CD were greater in the South, and the lowest absence rates due to CD were noted in the North and Northeast. Absence from work was longer (extending for nearly a year) in patients with CD compared to those with UC. The rates of temporary and permanent disability were greater among women. Permanent disability rates were higher in the South (UC) and Southeast (CD). The value of benefits paid for IBD represented approximately 1% of all social security benefits. The benefits paid for CD were higher than for UC, whereas both tended to decrease from 2010 to 2014. CONCLUSIONS: In Brazil, IBD frequently causes disability for prolonged periods and contributes to early retirement. Reduction trends may reflect improvements in access to health care and medication. Vocational rehabilitation programs may positively impact social security and the patients' quality of life.


Assuntos
Pessoas com Deficiência , Custos de Cuidados de Saúde , Doenças Inflamatórias Intestinais/economia , Adulto , Brasil , Colite Ulcerativa , Doença de Crohn , Feminino , Humanos , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/reabilitação , Masculino , Qualidade de Vida
9.
Intern Med J ; 48(6): 674-681, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29136332

RESUMO

BACKGROUND: Electronic health (eHealth) decision support tools have the potential to: facilitate inflammatory bowel disease (IBD) self-management, reduce health care utilisation and alleviate the pressure on overburdened outpatient clinics. The purpose of this study was to explore the perspectives of key stakeholders on the potential use of a decision support tool for IBD patients. METHODS: A qualitative study using focus group methodology was conducted at a tertiary IBD centre in Melbourne, Australia in February 2015. Key stakeholders, including physicians, nurses and patients, were included in the study. Two independent reviewers undertook inductive coding and generated themes. RESULTS: In total, 31 participants were included in the study (including 16 males; 11 physicians; 6 nurses). An eHealth decision support tool was thought to be beneficial to facilitate IBD self-management. Four themes emerged: (i) Framework for the decision support tool - the tool should be an adjunct to current models of care and facilitate shared decision-making and patient engagement; (ii) Target population - stable patients with mild to moderate disease; (iii) Functionalities of the intervention - a web-based platform encompassing patient-reported outcomes, objective markers of disease and clinical algorithms based on international guidelines; and (iv) Design and Implementation - patients should be involved in the design. CONCLUSIONS: eHealth interventions are thought to be an important strategy to facilitate self-management for patients with IBD. A multi-stage iterative approach should be adopted in the design and implementation process of eHealth interventions. Patient perspectives need to be sought prior to and throughout the development of an eHealth decision support tools for IBD.


Assuntos
Técnicas de Apoio para a Decisão , Doenças Inflamatórias Intestinais/reabilitação , Participação do Paciente , Autogestão/métodos , Telemedicina , Austrália , Feminino , Grupos Focais , Humanos , Masculino , Pesquisa Qualitativa
10.
J Gastroenterol ; 52(5): 555-567, 2017 May.
Artigo em Inglês | MEDLINE | ID: mdl-27470433

RESUMO

BACKGROUND: Inflammatory bowel disease (IBD) has a significant negative impact on quality of life (QOL); however, the direct impact of IBD on several aspects of patients' lives is unknown. The IMPACT survey was conducted in Europe in 2010-2011 to determine this impact. We conducted the IMPACT survey in Japan and compared the results between subgroups of patients with ulcerative colitis (UC) and Crohn's disease (CD). METHODS: The 52-item IMPACT survey questionnaire assessing treatment and the impact of IBD on patients' lives was translated into Japanese and administered to IBD patients recruited through patient advocacy groups. RESULTS: Between June 2013 and January 2014, 172 Japanese IBD patients completed the questionnaire (including 84 UC and 83 CD patients). Half of all patients (84/172, 48.8 %) were satisfied with their treatment plan, and half of those who had undergone surgery were satisfied with the outcome (46/87, 52.9 %). Although 34.9 % (60/172) of patients had not been hospitalized in 5 years, 50.0 % (86/172) had been hospitalized for more than 10 days. During the most recent flare, 49.4 % (85/172) of patients had to reschedule appointments because of IBD. Moreover, 32.0 % (55/172) of patients had to make adjustments such as working part-time or at home to avoid taking sick days; 35.5 % (61/172) of patients felt that they had lost a job because of IBD. CONCLUSIONS: Our survey results indicate that IBD patients' lives and social activities are affected by the deterioration of QOL due to IBD and its symptoms.


Assuntos
Doenças Inflamatórias Intestinais/reabilitação , Qualidade de Vida , Adolescente , Adulto , Distribuição por Idade , Idoso , Criança , Colite Ulcerativa/diagnóstico , Colite Ulcerativa/reabilitação , Colite Ulcerativa/terapia , Doença de Crohn/diagnóstico , Doença de Crohn/reabilitação , Doença de Crohn/terapia , Feminino , Inquéritos Epidemiológicos , Humanos , Doenças Inflamatórias Intestinais/diagnóstico , Doenças Inflamatórias Intestinais/terapia , Japão , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Relações Profissional-Paciente , Psicometria , Distribuição por Sexo , Inquéritos e Questionários , Adulto Jovem
11.
Health Educ Res ; 31(6): 782-791, 2016 12.
Artigo em Inglês | MEDLINE | ID: mdl-27651394

RESUMO

Although inflammatory bowel disease (IBD) affects patients' psychological well-being, previous educational programs have failed to demonstrate effects on psychosocial outcomes and quality of life. Therefore, we developed a group-based psychoeducational program that combined provision of both medical information and psychological self-management skills, delivered in an interactive manner, and evaluated it in a large, cluster-randomized trial. We assigned 540 rehabilitation inpatients suffering from IBD (mean age 43 years, 66% female) to either the new intervention or a control group comprising the same overall intensity and the same medical information, but only general psychosocial information. The primary outcome was patient-reported IBD-related concerns. Secondary outcomes included disease knowledge, coping, self-management skills, fear of progression, anxiety, depression and quality of life. Assessments took place at baseline, end of rehabilitation and after 3 and 12 months.The psychoeducational self-management program did not prove superior to the control group regarding primary and secondary outcomes. However, positive changes over time occurred in both groups regarding most outcomes. The superior effectiveness of the newly developed psychoeducational program could not be demonstrated. Since the intervention and control groups may have been too similar, this trial may have been too conservative to produce between-group effects.


Assuntos
Doenças Inflamatórias Intestinais/reabilitação , Educação de Pacientes como Assunto/métodos , Autogestão/educação , Adaptação Psicológica , Adulto , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Doenças Inflamatórias Intestinais/psicologia , Pacientes Internados/educação , Pacientes Internados/psicologia , Masculino , Qualidade de Vida
12.
Rehabilitation (Stuttg) ; 55(4): 248-55, 2016 Aug.
Artigo em Alemão | MEDLINE | ID: mdl-27529302

RESUMO

BACKGROUND: Many CED-patients struggle with complex problem profiles and may be offered and profit from multidisciplinary multimodal rehabilitation. It is still unclear by whom and with what effects this option is used. METHODS: We compared the results of an observational cohort study of 199 CED-inpatients of a single rehab clinic with those of 310 gastroenterological outpatients using propensity score matching. RESULTS: Rehabilitands show more complex problem profiles than CED-outpatients. After 6 months of follow up direct and indirect change measures show generally small positive changes - however comparable in quality and size with that of matched outpatients. CONCLUSION: Complex rehab is mainly used by CED-patients with several bio-psycho-social problems. Our preliminary data do not suggest a marked additional benefit of inpatient rehab compared to specialised outpatient care. Stricter controlled trials are urgently needed.


Assuntos
Assistência Ambulatorial/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Doenças Inflamatórias Intestinais/epidemiologia , Doenças Inflamatórias Intestinais/reabilitação , Reabilitação/estatística & dados numéricos , Adulto , Distribuição por Idade , Feminino , Seguimentos , Alemanha/epidemiologia , Humanos , Doenças Inflamatórias Intestinais/diagnóstico , Masculino , Pessoa de Meia-Idade , Prevalência , Pontuação de Propensão , Reabilitação/métodos , Distribuição por Sexo , Resultado do Tratamento
13.
Patient Educ Couns ; 99(3): 421-428, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26597543

RESUMO

OBJECTIVE: The aim of the study was to test the effects of a generic transition-oriented patient education program on adolescents' health service participation and quality of life (QoL). METHODS: We conducted a controlled trial comparing participants of 29 transition workshops with treatment as usual in 274 adolescents (16.8 mean age, SD=1.76) diagnosed with type I diabetes (DM), cystic fibrosis (CF) or inflammatory bowel disease (IBD). A two-day transition workshop was carried out at 12 sites in Germany, focusing in standardized modules on adjustment to adult care settings, organization of future disease management, career choices and partnership. Study outcomes were health-related transition competence, self-efficacy, satisfaction with care, patient activation and QoL. Measures were assessed at baseline and six-month follow-up. RESULTS: Repeated-measurement covariance analysis using age as a covariate showed that the transition workshop significantly affected transition competence, self-efficacy and satisfaction with school care six months post intervention. The intervention did not significantly affect patient activation and QoL. However, post-hoc analysis suggested different effects across conditions. CONCLUSION: The program has a positive effect on the competence of adolescents in the transition phase. PRACTICE IMPLICATIONS: The study demonstrates that an intervention can be effective in preparing adolescents with chronic conditions for transitions.


Assuntos
Doença Crônica/psicologia , Doença Crônica/reabilitação , Diabetes Mellitus Tipo 1/terapia , Serviços de Saúde/estatística & dados numéricos , Qualidade de Vida , Autocuidado/psicologia , Transição para Assistência do Adulto/organização & administração , Adolescente , Serviços de Saúde do Adolescente , Fibrose Cística/psicologia , Fibrose Cística/reabilitação , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/reabilitação , Gerenciamento Clínico , Feminino , Alemanha , Humanos , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/reabilitação , Masculino , Avaliação de Processos e Resultados em Cuidados de Saúde , Educação de Pacientes como Assunto , Satisfação do Paciente , Estudos Prospectivos , Autoeficácia , Adulto Jovem
14.
Inflamm Bowel Dis ; 20(9): 1611-7, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-25025714

RESUMO

BACKGROUND: Youth with inflammatory bowel diseases are at risk for impaired health-related quality of life (HRQoL) and problems with social functioning. This study examined the impact of attending Camp Oasis (a disease-specific weeklong camp experience) on the HRQoL and social functioning of youth with inflammatory bowel diseases. Additionally, the study collected pilot data on whether a postcamp Facebook group contributed to maintenance or enhancement of these factors. METHODS: Twenty-one youth ages 14 to 17 years who attended Camp Oasis and were Facebook users participated. HRQoL and social functioning (i.e., social support and social connectedness) were assessed through validated youth-report questionnaires at precamp, postcamp, and post-Facebook group. The Facebook group was 8 weeks in duration and encouraged campers to continue interacting in a private, protected setting. RESULTS: Analyses of effect sizes (i.e., Cohen's d) indicated medium and statistically significant increases in HRQoL from precamp to postcamp (d = 0.40) and small increases in social functioning (d = 0.15-0.24). Additional improvements in social functioning were seen from postcamp to post-Facebook group (d = 0.21-0.32), and overall improvements were observed in all domains (d = 0.17-0.52). CONCLUSIONS: Findings replicated those of previous research in documenting the value of Camp Oasis on enhancing HRQoL. Both the camp experience and the Facebook group contributed to improvements in youth social functioning. Thus, supplementing the camp experience with membership in an online community may enhance social functioning in adolescents with inflammatory bowel diseases.


Assuntos
Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/reabilitação , Educação de Pacientes como Assunto , Qualidade de Vida , Ajustamento Social , Apoio Social , Estresse Psicológico/prevenção & controle , Adolescente , Feminino , Seguimentos , Humanos , Internet/estatística & dados numéricos , Masculino , Prognóstico , Escalas de Graduação Psiquiátrica , Fatores de Risco , Índice de Gravidade de Doença , Inquéritos e Questionários
15.
Pediatrics ; 133(6): e1639-46, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24843066

RESUMO

BACKGROUND: Adolescents with chronic disease (ACD) must develop independent disease self-management and learn to communicate effectively with their health care team to transition from pediatric to adult-oriented health care systems. Disease-specific interventions have been implemented to aid specific ACD groups through transition. A generic approach might be effective and cost-saving. METHODS: Eighty-one ACD, aged 12 to 20 years, were recruited for a randomized clinical trial evaluating an 8-month transition intervention (MD2Me). MD2Me recipients received a 2-month intensive Web-based and text-delivered disease management and skill-based intervention followed by a 6-month review period. MD2Me recipients also had access to a texting algorithm for disease assessment and health care team contact. The intervention was applicable to adolescents with diverse chronic illnesses. Controls received mailed materials on general health topics. Disease management, health-related self-efficacy, and health assessments were performed at baseline and at 2 and 8 months. Frequency of patient-initiated communications was recorded over the study period. Outcomes were analyzed according to assigned treatment group over time. RESULTS: MD2Me recipients demonstrated significant improvements in performance of disease management tasks, health-related self-efficacy, and patient-initiated communications compared with controls. CONCLUSIONS: Outcomes in ACD improved significantly among recipients of a generic, technology-based intervention. Technology can deliver transition interventions to adolescents with diverse chronic illnesses, and a generic approach offers a cost-effective means of positively influencing transition outcomes. Further research is needed to determine whether improved short-term outcomes translate into an improved transition for ACD.


Assuntos
Telefone Celular , Doença Crônica/psicologia , Doença Crônica/reabilitação , Comunicação , Instrução por Computador/economia , Gerenciamento Clínico , Internet/economia , Autocuidado/economia , Autocuidado/psicologia , Transição para Assistência do Adulto/organização & administração , Adolescente , Algoritmos , Criança , Doença Crônica/economia , Fibrose Cística/economia , Fibrose Cística/psicologia , Fibrose Cística/reabilitação , Diabetes Mellitus Tipo 1/economia , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/reabilitação , Feminino , Humanos , Doenças Inflamatórias Intestinais/economia , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/reabilitação , Masculino , Autoeficácia , Envio de Mensagens de Texto , Transição para Assistência do Adulto/economia , Adulto Jovem
16.
J Pediatr Gastroenterol Nutr ; 59(1): 33-8, 2014 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-24590221

RESUMO

OBJECTIVES: The aim of the present study was to investigate knowledge of pediatric patients with inflammatory bowel disease (IBD) and perceptions of Camp Gut Busters, an IBD summer camp. METHODS: The present ethnographic study uses traditional anthropological methods to investigate participants' knowledge and perceptions of Camp Gut Busters. Data were gathered using in-depth qualitative interviews, participant observation during 4 Camp Gut Busters summer sessions, and attendance records for the summer camp. Participants either attended Camp Gut Busters (campers) or did not attend (noncampers). Campers' knowledge and perceptions were based on their actual experience at Camp Gut Busters, whereas those of noncampers were based on their expectations of camp. RESULTS: Participant responses reference their illness experience with IBD, their struggles of learning to live with a chronic condition, and the benefits of attending a disease-specific camp. Campers addressed notions of identity, the isolation associated with having a potentially stigmatizing chronic condition, therapeutic routines, and awareness of IBD. Noncampers focused on discomfort with IBD and their identity as an individual and child with the disease. CONCLUSIONS: Pediatric patients with IBD who attended a disease-specific summer camp benefited from the experience. Exposure to peers with similar therapeutic routines and to the range of IBD helped campers build an empathetic social network and introduced a new perspective on their disease. Attending a disease-specific camp helps pediatric patients with IBD in psychosocial adjustment and acquisition of knowledge about their disease. Ultimately, it helps them learn to live with their chronic condition.


Assuntos
Acampamento , Conhecimentos, Atitudes e Prática em Saúde , Doenças Inflamatórias Intestinais/psicologia , Doenças Inflamatórias Intestinais/reabilitação , Apoio Social , Adaptação Psicológica , Adolescente , Antropologia Cultural , Criança , Feminino , Humanos , Entrevistas como Assunto , Masculino , Aceitação pelo Paciente de Cuidados de Saúde , Pesquisa Qualitativa , Estigma Social
17.
J Crohns Colitis ; 8(9): 1118-24, 2014 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24630487

RESUMO

BACKGROUND: Abdominal pain is commonly reported by youth with IBD. In a significant subset of youth, pain severity and pain catastrophizing (i.e., unhelpful thoughts related to the pain) may contribute to more negative outcomes and greater impairment in functioning. This study aimed to examine relationships of pain severity and pain catastrophizing with functional disability among a sample of youth with inflammatory bowel disease (IBD). METHODS: Seventy-five youth aged 11 to 18 years completed ratings of abdominal pain severity, pain catastrophizing, and functional disability using validated measures. Disease activity was rated by treating physicians. RESULTS: Over half of participants reported abdominal pain in the past two weeks, and pain was present among those with and without clinical disease activity. Nearly one-third of youth reported mild to moderate functional disability. After controlling for gender, pain severity accounted for 15% of the variance in patient functional disability. Moreover, pain catastrophizing contributed significant variance to the prediction of functional disability (approximately 7%) beyond the role of pain severity. CONCLUSIONS: Greater attention to the role of pain catastrophizing in contributing to functional disability in youth with IBD may be important given that pain-related cognitions are modifiable via intervention.


Assuntos
Dor Abdominal/reabilitação , Adaptação Psicológica/fisiologia , Avaliação da Deficiência , Pessoas com Deficiência/reabilitação , Doenças Inflamatórias Intestinais/complicações , Dor Abdominal/diagnóstico , Dor Abdominal/etiologia , Adolescente , Atitude Frente a Saúde , Criança , Feminino , Seguimentos , Humanos , Doenças Inflamatórias Intestinais/reabilitação , Masculino , Medição da Dor , Prognóstico , Índice de Gravidade de Doença , Inquéritos e Questionários
18.
Eur J Gastroenterol Hepatol ; 26(3): 288-94, 2014 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24407360

RESUMO

BACKGROUND: Complementary and alternative medicines (CAM) are widely used by patients with inflammatory bowel disease (IBD). Few data have been published on the impact of CAM on the quality of life (QOL). AIMS: The aim of the study was to describe CAM use in French patients with IBD, identify characteristics associated with CAM use, and assess the impact of CAM on the QOL. METHODS: We conducted an internet survey on CAM through the French IBD patient's association website. Patients had to answer a questionnaire (LimeSurvey application) about sociodemography, IBD treatment, CAM type, socioeconomic data, and QOL using the Short IBD Questionnaire (SIBDQ). Patients noted the impact of CAM on their symptoms and on their QOL on a scale of 0-100. CAM users and nonusers were compared by univariate and multivariate analyses. RESULTS: A total of 936 IBD patients responded and 767 (82.4%) filled up the whole questionnaire: 503 reported CAM use and 172 had never used. The types of CAM reported were diet-based (30.7%), body-based (25.1%), homeopathic or traditional medicine (19.6%), naturopathy (15.2%), and mind-body medicine (9.1%). The gastroenterologist was aware of CAM use in only 46% of patients. CAM users were more likely to have ulcerative colitis [odds ratio (OR)=1.78, P=0.018], clinical remission (OR=1.42, P=0.06), high level of education (OR=1.51, P=0.02), poor observance (OR=1.81, P=0.017), or to have terminated conventional treatment (OR=2.03, P=0.003). CAM users tend to have higher rates of SIBDQ scores, greater than 50 (OR=1.57, P=0.06). Improvement in symptoms and QOL was reported with all CAM types except mind medicine. CONCLUSION: CAM use is widespread among IBD patients. CAM users report improvement in symptoms and QOL, but they tend to stop their conventional treatment. Better information about CAM might improve adherence to conventional treatment.


Assuntos
Terapias Complementares/estatística & dados numéricos , Doenças Inflamatórias Intestinais/reabilitação , Qualidade de Vida , Adolescente , Adulto , Idoso , Criança , Terapias Complementares/métodos , Feminino , França , Fármacos Gastrointestinais/uso terapêutico , Pesquisas sobre Atenção à Saúde , Humanos , Doenças Inflamatórias Intestinais/tratamento farmacológico , Masculino , Adesão à Medicação/estatística & dados numéricos , Pessoa de Meia-Idade , Satisfação do Paciente , Psicometria , Fatores Socioeconômicos , Resultado do Tratamento , Adulto Jovem
19.
J Dig Dis ; 15(4): 174-9, 2014 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-24373601

RESUMO

OBJECTIVE: The aim of this study was to determine whether the effects of prolonged therapy (≥1 year) with anti-tumor necrosis factor (TNF) agents were sustained on the health-related quality of life (HRQoL) in patients with inflammatory bowel disease (IBD). METHODS: A cross-sectional survey of patients with IBD who were treated with anti-TNF agents was performed. Results of the validated HRQoL measures (inflammatory bowel disease questionnaire [IBDQ], EuroQoL-5 dimensions [EQ-5D], health status visual analogue scale [VAS] and the Zung self-rating depression scale) were recorded and compared between patients treated with anti-TNF agents for <1 year and ≥1 year. RESULTS: A total of 41 patients were finally enrolled in the study. Among them, 11 (26.8%) had received anti-TNF therapy for less than one year with a median duration of 7 months (range 3-11 months), while the other 30 (73.2%) had been treated for ≥1 year with a median duration of 42 months (range 12-104 months). Crohn's disease was the most common type in both groups. None of the mean IBDQ, EQ-5D and EQ-5D plus VAS, or Zung self-rating depression scale scores differed significantly between the two groups of patients. CONCLUSIONS: Improvements in HRQoL for IBD patients on anti-TNF therapy were sustained for longer than one year. HRQoL measures for IBD patients treated with anti-TNF therapy for <1 year do not differ significantly from those treated for ≥1 year, but a trend towards improved HRQoL measures with prolonged therapy can be obtained.


Assuntos
Fármacos Gastrointestinais/administração & dosagem , Imunossupressores/administração & dosagem , Doenças Inflamatórias Intestinais/tratamento farmacológico , Qualidade de Vida , Fator de Necrose Tumoral alfa/antagonistas & inibidores , Adulto , Idoso , Anti-Inflamatórios não Esteroides/administração & dosagem , Anti-Inflamatórios não Esteroides/uso terapêutico , Estudos Transversais , Esquema de Medicação , Avaliação de Medicamentos/métodos , Feminino , Fármacos Gastrointestinais/uso terapêutico , Indicadores Básicos de Saúde , Humanos , Imunossupressores/uso terapêutico , Doenças Inflamatórias Intestinais/reabilitação , Masculino , Pessoa de Meia-Idade , Psicometria , Fatores de Tempo , Resultado do Tratamento , Adulto Jovem
20.
J Pediatr Surg ; 48(9): 1924-30, 2013 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-24074669

RESUMO

BACKGROUND: Structured care pathways optimising peri-operative care have been shown to significantly enhance post-operative recovery. We aim to determine if enhanced recovery after surgery (ERAS) principles could provide benefit for paediatric patients undergoing major colorectal resection for inflammatory bowel disease (IBD). METHODS: Children undergoing elective bowel resection for IBD at a regional paediatric unit using standard methods of peri-operative care were matched to adult cases from an associated tertiary referral university hospital already using an ERAS program. Cases were matched for disease type, gender, operative procedure, and ASA grade. RESULTS: Forty-four children undergoing fifty procedures were identified. Thirty-four were matched to adult cases. Total length of stay in the paediatric group was significantly longer than in the adult group (6 vs. 9 days; P=0.001). Paediatric patients were slower to start solid diet (1 vs. 4 days; P<0.0001) and were slower to mobilize post-operatively (1 vs. 4 days; P<0.0001). No difference was seen in time to restoration of bowel function (2 vs. 3 days; P=0.49). Thirty day readmissions and total in-hospital morbidity were not significantly different between the groups. CONCLUSION: Potentially, application of ERAS in paediatric surgery could accelerate recovery and reduce length of post-operative stay thereby improving quality and efficiency of care.


Assuntos
Cirurgia Colorretal/reabilitação , Procedimentos Clínicos , Procedimentos Cirúrgicos Eletivos/reabilitação , Doenças Inflamatórias Intestinais/cirurgia , Assistência Perioperatória/métodos , Adolescente , Adulto , Fatores Etários , Criança , Colectomia/métodos , Colectomia/reabilitação , Bolsas Cólicas , Dieta , Deambulação Precoce , Feminino , Humanos , Ileostomia/reabilitação , Doenças Inflamatórias Intestinais/reabilitação , Complicações Intraoperatórias/epidemiologia , Complicações Intraoperatórias/prevenção & controle , Laparoscopia/métodos , Laparoscopia/reabilitação , Tempo de Internação/estatística & dados numéricos , Masculino , Readmissão do Paciente/estatística & dados numéricos , Assistência Perioperatória/estatística & dados numéricos , Complicações Pós-Operatórias/epidemiologia , Complicações Pós-Operatórias/prevenção & controle , Medicação Pré-Anestésica , Recuperação de Função Fisiológica , Adulto Jovem
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