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1.
J Intellect Disabil ; : 17446295231155781, 2023 Feb 16.
Artigo em Inglês | MEDLINE | ID: mdl-36798039

RESUMO

This systematic review aimed to explore the impact educational interventions have on undergraduate nursing and medical students' attitudes and empathy levels towards people with disability. There are over one billion people with some form of disability currently. A growing body of research reveals that nurses and doctors display negative attitudes including decreased empathy towards people with disability. A systematic review using narrative synthesis of chosen randomized controlled trials was employed. A comprehensive search was completed in June 2021 on six databases (CINAHL, Medline, Science Direct, Health Research Premium - PROQUEST, Scopus. Cochrane Library). The search strategy yielded 21,616 studies and only three randomised controlled trials fulfilled the eligibility criteria. These trials included 125 participants (n = 50 medical students and n = 75 nursing students) and evaluated the effectiveness of a disabled health course, disability education module with bedside teaching and wheelchair workshop intervention. Findings from one study revealed that a disabled health course using affective learning method based on a transformative learning theory significantly improves attitudes to disability amongst nursing students however there was no statistically significant difference in empathy levels. More high-quality randomised controlled trials with greater theoretical and methodological complexity are needed to identify more effective educational approaches that enhance attitude and empathy levels of these key stakeholders.

2.
Eur J Cancer Care (Engl) ; 31(4): e13590, 2022 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35393746

RESUMO

OBJECTIVE: Following a review of the existing body of literature, this study aimed to explore the need for a breast cancer awareness intervention specifically targeted at women with mild/moderate levels of intellectual disability (ID) and provide perspectives on the preferred processes and content underpinning an intervention. METHODS: A qualitative, descriptive design using semi-structured, individual (n = 5) and focus group (n = 5) interviews were used to engage with a non-probability, purposive sample of key stakeholders (n = 25) including women with mild/moderate levels of ID, caregivers and healthcare professionals. Data were analysed using qualitative content analysis. RESULTS: Findings highlighted that an educational intervention should focus on breast awareness as opposed to breast cancer awareness. Additionally, findings identified that a combined breast awareness and healthy living intervention could be effective. However, the intervention needs to have a multimodal, hands-on, person-centred approach to learning which is underpinned by theory. Furthermore, integrating the caregivers and healthcare professionals into the intervention is recommended. CONCLUSION: Findings from this study provide a foundation for developing and implementing a theoretically underpinned, multimodal, breast awareness and healthy living educational intervention for women with mild/moderate levels of ID.


Assuntos
Neoplasias da Mama , Deficiência Intelectual , Cuidadores , Feminino , Educação em Saúde , Humanos , Pesquisa Qualitativa
3.
J Intellect Disabil ; : 1744629521999548, 2021 Mar 26.
Artigo em Inglês | MEDLINE | ID: mdl-33769130

RESUMO

INTRODUCTION: Incidence rates for developing breast cancer are similar for women regardless of intellectual ability. However, women with an intellectual disability present with advanced breast cancers, which often have a poor prognosis. METHOD: A structured narrative review of the literature was performed to explore the concepts of breast awareness and breast cancer awareness and subsequently, identify barriers to breast cancer awareness encountered by women with an intellectual disability. RESULTS: A total of 22 studies involving people with varying levels of intellectual disability informed this review. The barriers to breast cancer awareness encountered by women with an intellectual disability include: lack of their understanding, the role of the carer and literacy issues. CONCLUSION: Identifying the barriers to breast cancer awareness for women with an intellectual disability will help to facilitate breast cancer awareness which has the potential to result in better long-term outcomes through an early diagnosis of breast cancer.

4.
Cochrane Database Syst Rev ; 4: CD012005, 2020 04 16.
Artigo em Inglês | MEDLINE | ID: mdl-32297974

RESUMO

BACKGROUND: Inflammatory bowel disease (IBD) is an umbrella term used to describe a group of chronic, progressive inflammatory disorders of the digestive tract. Crohn's disease and ulcerative colitis are the two main types. Fatigue is a common, debilitating and burdensome symptom experienced by individuals with IBD. The subjective, complex nature of fatigue can often hamper its management. The efficacy and safety of pharmacological or non-pharmacological treatments for fatigue in IBD is not yet established through systematic review of studies. OBJECTIVES: To assess the efficacy and safety of pharmacological and non-pharmacological interventions for managing fatigue in IBD compared to no treatment, placebo or active comparator. SEARCH METHODS: A systematic search of the databases Embase, MEDLINE, Cochrane Library, CINAHL, PsycINFO was undertaken from inception to July 2018. A top-up search was run in October 2019. We also searched the Cochrane IBD Group Specialized Register, the Cochrane Central Register of Controlled Trials, ongoing trials and research registers, conference abstracts and reference lists for potentially eligible studies. SELECTION CRITERIA: Randomised controlled trials of pharmacological and non-pharmacological interventions in children or adults with IBD, where fatigue was assessed as a primary or secondary outcome using a generic or disease-specific fatigue measure, a subscale of a larger quality of life scale or as a single-item measure, were included. DATA COLLECTION AND ANALYSIS: Two authors independently screened search results and four authors extracted and assessed bias independently using the Cochrane 'Risk of bias' tool. The primary outcome was fatigue and the secondary outcomes included quality of life, adverse events (AEs), serious AEs and withdrawal due to AEs. Standard methodological procedures were used. MAIN RESULTS: We included 14 studies (3741 participants): nine trials of pharmacological interventions and five trials of non-pharmacological interventions. Thirty ongoing studies were identified, and five studies are awaiting classification. Data on fatigue were available from nine trials (1344 participants). In only four trials was managing fatigue the primary intention of the intervention (electroacupuncture, physical activity advice, cognitive behavioural therapy and solution-focused therapy). Electroacupuncture Fatigue was measured with Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-F) (scores range from 0 to 52). The FACIT-F score at week eight was 8.00 points higher (better) in participants receiving electroacupuncture compared with no treatment (mean difference (MD) 8.00, 95% CI 6.45 to 9.55; 1 RCT; 27 participants; low-certainty evidence). Results at week 16 could not be calculated. FACIT-F scores were also higher with electroacupuncture compared to sham electroacupuncture at week eight (MD 5.10, 95% CI 3.49 to 6.71; 1 RCT; 30 participants; low-certainty evidence) but not at week 16 (MD 2.60, 95% CI 0.74 to 4.46; 1 RCT; 30 participants; low-certainty evidence). No adverse events were reported, except for one adverse event in the sham electroacupuncture group. Cognitive behavioural therapy (CBT) and solution-focused therapy Compared with a fatigue information leaflet, the effects of CBT on fatigue are very uncertain (Inflammatory Bowel Disease-Fatigue (IBD-F) section I: MD -2.16, 95% CI -6.13 to 1.81; IBD-F section II: MD -21.62, 95% CI -45.02 to 1.78; 1 RCT, 18 participants, very low-certainty evidence). The efficacy of solution-focused therapy on fatigue is also very uncertain, because standard summary data were not reported (1 RCT, 98 participants). Physical activity advice One 2 x 2 factorial trial (45 participants) found physical activity advice may reduce fatigue but the evidence is very uncertain. At week 12, compared to a control group receiving no physical activity advice plus omega 3 capsules, FACIT-F scores were higher (better) in the physical activity advice plus omega 3 group (FACIT-F MD 6.40, 95% CI -1.80 to 14.60, very low-certainty evidence) and the physical activity advice plus placebo group (FACIT-F MD 9.00, 95% CI 1.64 to 16.36, very low-certainty evidence). Adverse events were predominantly gastrointestinal and similar across physical activity groups, although more adverse events were reported in the no physical activity advice plus omega 3 group. Pharmacological interventions Compared with placebo, adalimumab 40 mg, administered every other week ('eow') (only for those known to respond to adalimumab induction therapy), may reduce fatigue in patients with moderately-to-severely active Crohn's disease, but the evidence is very uncertain (FACIT-F MD 4.30, 95% CI 1.75 to 6.85; very low-certainty evidence). The adalimumab 40 mg eow group was less likely to experience serious adverse events (OR 0.56, 95% CI 0.33 to 0.96; 521 participants; moderate-certainty evidence) and withdrawal due to adverse events (OR 0.48, 95%CI 0.26 to 0.87; 521 participants; moderate-certainty evidence). Ferric maltol may result in a slight increase in fatigue, with better SF-36 vitality scores reported in the placebo group compared to the treatment group following 12 weeks of treatment (MD -9.31, 95% CI -17.15 to -1.47; 118 participants; low-certainty evidence). There may be little or no difference in adverse events (OR 0.55, 95% CI 0.26 to 1.18; 120 participants; low-certainty evidence) AUTHORS' CONCLUSIONS: The effects of interventions for the management of fatigue in IBD are uncertain. No firm conclusions regarding the efficacy and safety of interventions can be drawn. Further high-quality studies, with a larger number of participants, are required to assess the potential benefits and harms of therapies. Future studies should assess interventions specifically designed for fatigue management, targeted at selected IBD populations, and measure fatigue as the primary outcome.


Assuntos
Fadiga/terapia , Doenças Inflamatórias Intestinais/complicações , Adalimumab/administração & dosagem , Adalimumab/efeitos adversos , Anti-Inflamatórios/administração & dosagem , Anti-Inflamatórios/efeitos adversos , Terapia Cognitivo-Comportamental , Eletroacupuntura , Exercício Físico , Fadiga/etiologia , Ácidos Graxos Ômega-3/administração & dosagem , Ácidos Graxos Ômega-3/efeitos adversos , Compostos Férricos/efeitos adversos , Hematínicos/efeitos adversos , Humanos , Psicoterapia Breve , Pironas/efeitos adversos , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
5.
Cochrane Database Syst Rev ; (9): CD007641, 2014 Sep 08.
Artigo em Inglês | MEDLINE | ID: mdl-25198249

RESUMO

BACKGROUND: Self-management education may help patients with cystic fibrosis and their families to choose, monitor and adjust treatment requirements for their illness, and also to manage the effects of illness on their lives. Although self-management education interventions have been developed for cystic fibrosis, no previous systematic review of the evidence of effectiveness of these interventions has been conducted. OBJECTIVES: To assess the effects of self-management education interventions on improving health outcomes for patients with cystic fibrosis and their caregivers SEARCH METHODS: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Trials Register (date of the last search: 22 August 2013).We also searched databases through EBSCO (CINAHL; Psychological and Behavioural Sciences Collection; PsychInfo; SocINDEX) and Elsevier (Embase) and handsearched relevant journals and conference proceedings (date of the last searches: 01 February 2014 ). SELECTION CRITERIA: Randomised controlled trials, quasi-randomised controlled trials or controlled clinical trials comparing different types of self-management education for cystic fibrosis or comparing self-management education with standard care or no intervention. DATA COLLECTION AND ANALYSIS: Two authors assessed trial eligibility and risk of bias. Three authors extracted data. MAIN RESULTS: Four trials (involving a total of 269 participants) were included. The participants were children with cystic fibrosis and their parents or caregivers in three trials and adults with cystic fibrosis in one trial. The trials compared four different self-management education interventions versus standard treatment: (1) a training programme for managing cystic fibrosis in general; (2) education specific to aerosol and airway clearance treatments; (3) disease-specific nutrition education; and (4) general and disease-specific nutrition education. Training children to manage cystic fibrosis in general had no statistically significant effects on weight after six to eight weeks, mean difference -7.74 lb (i.e. 3.51 kg) (95% confidence interval -35.18 to 19.70). General and disease-specific nutrition education for adults had no statistically significant effects on: pulmonary function (forced expiratory volume at one second), mean difference -5.00 % (95% confidence interval -18.10 to 8.10) at six months and mean difference -5.50 % (95% confidence interval -18.46 to 7.46) at 12 months; or weight, mean difference - 0.70 kg (95% confidence interval -6.58 to 5.18) at six months and mean difference -0.70 kg (95% confidence interval -6.62 to 5.22) at 12 months; or dietary fat intake scores, mean difference 1.60 (85% confidence interval -2.90 to 6.10) at six months and mean difference 0.20 (95% confidence interval -4.08 to 4.48) at 12 months. There is some limited evidence to suggest that self-management education may improve knowledge in patients with cystic fibrosis but not in parents or caregivers. There is also some limited evidence to suggest that self-management education may result in positively changing a small number of behaviours in both patients and caregivers. AUTHORS' CONCLUSIONS: The available evidence from this review is of insufficient quantity and quality to draw any firm conclusions about the effects of self-management education for cystic fibrosis. Further trials are needed to investigate the effects of self-management education on a range of clinical and behavioural outcomes in children, adolescents and adults with cystic fibrosis and their caregivers.


Assuntos
Fibrose Cística/terapia , Terapia Nutricional , Educação de Pacientes como Assunto/métodos , Autocuidado , Adolescente , Adulto , Cuidadores/educação , Criança , Humanos , Pais/educação , Ensaios Clínicos Controlados Aleatórios como Assunto , Adulto Jovem
6.
Int J Nurs Pract ; 18(5): 497-500, 2012 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-23009379

RESUMO

Inflammatory bowel disease (IBD) collectively known as Crohn's disease and ulcerative colitis are chronic inflammatory diseases of the digestive tract. Periods of active and inactive disease are common along the trajectory of this illness. A range of symptoms such as fatigue, diarrhoea and abdominal pain are experienced and are often very debilitating in nature resulting in significance interference in daily life. Despite this, to date, research in the area of symptoms remains an underexplored topic. This paper aims to discuss current approaches to symptom assessment in IBD and the potential to measure symptom burden in further research, in order to gain a greater understanding into the experiences of individuals with IBD.


Assuntos
Indicadores Básicos de Saúde , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/diagnóstico , Humanos , Síndrome do Intestino Irritável/etiologia , Qualidade de Vida , Reprodutibilidade dos Testes
7.
Cochrane Database Syst Rev ; (7): CD007641, 2011 Jul 06.
Artigo em Inglês | MEDLINE | ID: mdl-21735415

RESUMO

BACKGROUND: Self-management education may help patients with cystic fibrosis and their families to choose, monitor and adjust treatment requirements for their illness, and also to manage the effects of illness on their lives. Although self-management education interventions have been developed for cystic fibrosis, no previous systematic review of the evidence of effectiveness of these interventions has been conducted. OBJECTIVES: To assess the effects of self-management education interventions on improving health outcomes for patients with cystic fibrosis and their caregivers SEARCH STRATEGY: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Trials Register (date of the last search: 23 February 2011).We also searched databases through EBSCO (CINAHL; Psychological and Behavioural Sciences Collection; PsychInfo; SocINDEX) and Elsevier (EMBASE) and handsearched relevant journals and conference proceedings (date of the last searches: 30th March 2011). SELECTION CRITERIA: Randomised controlled trials, quasi-randomised controlled trials or controlled clinical trials comparing different types of self-management education for cystic fibrosis or comparing self-management education with standard care or no intervention. DATA COLLECTION AND ANALYSIS: Two authors assessed trial eligibility and risk of bias. Three authors extracted data. MAIN RESULTS: Four trials (involving a total of 269 participants) were included. The participants were children with cystic fibrosis and their parents or caregivers in three trials and adults with cystic fibrosis in one trial. The trials compared four different self-management education interventions versus standard treatment: (1) a training programme for managing cystic fibrosis in general; (2) education specific to aerosol and airway clearance treatments; (3) disease-specific nutrition education; and (4) general and disease-specific nutrition education. Training children to manage cystic fibrosis in general had no statistically significant effects on weight after six to eight weeks, mean difference -7.74 lb (95% confidence interval -35.18 to 19.70). General and disease-specific nutrition education for adults had no statistically significant effects on: pulmonary function (forced expiratory volume at one second), mean difference -5.00 % (95% confidence interval -18.10 to 8.10) at six months and mean difference -5.50 % (95% confidence interval -18.46 to 7.46) at 12 months; or weight, mean difference - 0.70 kg (95% confidence interval -6.58 to 5.18) at six months and mean difference -0.70 kg (95% confidence interval -6.62 to 5.22) at 12 months; or dietary fat intake scores, mean difference 1.60 (85% confidence interval -2.90 to 6.10) at six months and mean difference 0.20 (95% confidence interval -4.08 to 4.48) at 12 months. There is some limited evidence to suggest that self-management education may improve knowledge in patients with cystic fibrosis but not in parents or caregivers. There is also some limited evidence to suggest that self-management education may result in positively changing a small number of behaviours in both patients and caregivers. AUTHORS' CONCLUSIONS: The available evidence from this review is of insufficient quantity and quality to draw any firm conclusions about the effects of self-management education for cystic fibrosis. Further trials are needed to investigate the effects of self-management education on a range of clinical and behavioural outcomes in children, adolescents and adults with cystic fibrosis and their caregivers.


Assuntos
Fibrose Cística/terapia , Educação de Pacientes como Assunto/métodos , Autocuidado , Adolescente , Adulto , Cuidadores/educação , Criança , Humanos , Terapia Nutricional , Pais/educação , Ensaios Clínicos Controlados Aleatórios como Assunto , Adulto Jovem
8.
J Wound Ostomy Continence Nurs ; 38(4): 373-8, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21606863

RESUMO

Pilonidal disease arises from hair follicles of the gluteal cleft and may result in a chronic exudative disorder. The management of pilonidal disease following surgical excision remains controversial, despite an abundance of research into different treatment options. Negative pressure wound therapy is an emerging treatment option for complex or recurrent pilonidal disease. We performed a comprehensive literature search, using the electronic databases MEDLINE, Cochrane library, CINAHL, PubMed, and Web of Knowledge. All studies, case reports, and multiple case series evaluating the use of negative pressure wound therapy for treatment of pilonidal disease were included. Despite the breadth of our search parameters, we identified limited studies addressing this issue; all were published between 2003 and 2007. Findings of 5 case reports or multiple case series tentatively suggest that negative pressure wound therapy may be an emerging treatment option for pilonidal disease management. However, we recommend that more rigorous research, including randomized controlled trials, be conducted before implications can be drawn for evidence-based practice.


Assuntos
Tratamento de Ferimentos com Pressão Negativa/métodos , Seio Pilonidal/cirurgia , Cuidados Pós-Operatórios/métodos , Cicatrização/fisiologia , Feminino , Humanos , Masculino , Prognóstico , Recidiva , Higiene da Pele/métodos , Infecção da Ferida Cirúrgica/terapia
9.
J Adv Nurs ; 66(12): 2604-19, 2010 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-20735504

RESUMO

AIM: This paper is a report of a review of the science of intervention development for type 1 diabetes in childhood and its implications for improving health outcomes in children, adolescents, and/or their families. BACKGROUND: Previous reviewers have identified insufficient evidence to support the application of effective interventions for type 1 diabetes in clinical practice. The need for quality randomized controlled trials to address shortcomings in previous study designs has been highlighted as a priority for future intervention research. However, there is also a need to consider the scientific development of interventions, which to date has received little attention. DATA SOURCE: A search for published randomized controlled trials over 5 years (2004-2008) was conducted in electronic databases (Medline, CINAHL, Cochrane Library, Psychinfo, ERIC). Reference lists of papers identified from electronic searches were examined for additional papers. METHODS: A systematic review was conducted. Studies were included if (i) an intervention for managing any aspect of type 1 diabetes was implemented, (ii) children, adolescents and/or their families were sampled, (iii) a randomized controlled trial, (iv) published in English. RESULTS: Fourteen randomized controlled trials were reviewed on education (n = 7), psychosocial (n = 5) and family therapy (n = 2) interventions. Compared to education interventions, family therapy and most psychosocial interventions were developed with greater scientific rigour, and demonstrated promising effects on more health outcomes measured. CONCLUSION: Interventions developed within clearly-defined scientific criteria offer potential for improving health outcomes in children and adolescents with type 1 diabetes and their families. Future reviews on interventions for type 1 diabetes in childhood need to include criteria for assessing the science of intervention development.


Assuntos
Diabetes Mellitus Tipo 1/terapia , Saúde da Família , Avaliação de Resultados em Cuidados de Saúde , Educação de Pacientes como Assunto , Avaliação de Programas e Projetos de Saúde/métodos , Adaptação Psicológica , Adolescente , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/sangue , Terapia Familiar , Humanos , Pesquisa em Enfermagem , Ensaios Clínicos Controlados Aleatórios como Assunto , Projetos de Pesquisa/normas , Adulto Jovem
10.
Int J Nurs Pract ; 16(5): 437-42, 2010 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-20854340

RESUMO

Symptom control is fundamental to the nursing management of inflammatory bowel disease (IBD). However, symptom control can be problematic for individuals with IBD, which could result in symptom burden. Symptom burden is an evolving concept in the discipline of nursing and to date little is known about how the defining characteristics of this concept have been applied to symptom research in IBD. In this discussion paper, the concept of symptom burden and the theory of unpleasant symptoms are explored as a basis for understanding symptom research in IBD. This is followed by a critical examination of previous symptom research in IBD. Our conclusion is that there is a need to rethink conceptual and theoretical underpinnings of symptom burden when researching IBD to take account of its defining characteristics, namely symptom severity, frequency and duration, quality and distress. Research knowledge on these defining characteristics will be important to inform nursing assessment of symptom burden in clinical practice.


Assuntos
Doenças Inflamatórias Intestinais/fisiopatologia , Medicina Baseada em Evidências , Humanos , Doenças Inflamatórias Intestinais/enfermagem
11.
J Crohns Colitis ; 11(3): 353-359, 2017 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-27664273

RESUMO

BACKGROUND: Robust research evidence should inform clinical practice of inflammatory bowel disease [IBD] specialist nurses, but such research is currently very limited. With no current agreement on research priorities for IBD nursing, this survey aimed to establish topics to guide future IBD nursing research across Europe. METHODS: An online modified Delphi survey with nurse and allied health professional members of the Nurses European Crohn's and Colitis Organisation [n = 303] was conducted. In Round One, participants proposed topics for research. In Round Two, research topics were rated on a 1-9 scale and subsequently synthesised to create composite research questions. In Round Three, participants selected their top five research questions, rating these on a 1-5 scale. RESULTS: Representing 13 European countries, 88, 90 and 58 non-medical professionals, predominantly nurses, responded to Rounds One, Two and Three, respectively. In Round One, 173 potential research topics were suggested. In Rounds Two And Three, responders voted for and prioritised 125 and 44 questions, respectively. Round Three votes were weighted [rank of 1 = score of 5], reflecting rank order. The top five research priorities were: interventions to improve self-management of IBD; interventions for symptoms of frequency, urgency and incontinence; the role of the IBD nurse in improving patient outcomes and quality of life; interventions to improve IBD fatigue; and care pathways to optimise clinical outcomes and patient satisfaction. CONCLUSIONS: The prioritised list of topics gives clear direction for future IBD nursing research. Conducting this research has potential to improve clinical practice and patient-reported outcomes.


Assuntos
Colite Ulcerativa/enfermagem , Doença de Crohn/enfermagem , Pesquisa em Enfermagem , Adulto , Colite Ulcerativa/complicações , Procedimentos Clínicos , Doença de Crohn/complicações , Técnica Delphi , Europa (Continente) , Fadiga/etiologia , Fadiga/enfermagem , Incontinência Fecal/etiologia , Incontinência Fecal/enfermagem , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Papel do Profissional de Enfermagem , Satisfação do Paciente , Qualidade de Vida , Autocuidado , Inquéritos e Questionários
12.
J Crohns Colitis ; 10(3): 315-22, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26598526

RESUMO

BACKGROUND AND AIMS: Individuals with inflammatory bowel disease experience debilitating symptoms on a daily basis, but little is known about symptom burden in IBD. The objectives were to (i) identify the most prevalent symptoms and the average number of symptoms experienced; (ii) assess symptom frequency, severity and distress; and (iii) determine the most burdensome symptoms experienced by individuals with inflammatory bowel disease. METHODS: A cross-sectional descriptive design was used to collect data in a single regional treatment centre in Ireland. A consecutive and unique sample of 247 individuals diagnosed with Crohn's disease and ulcerative colitis completed a modified disease-specific version of the Memorial Symptom Assessment Scale. RESULTS: Participants reported experiencing a median of 10 symptoms during the last week, but as many as 16 symptoms were experienced by those with active disease. Of the symptoms experienced, lack of energy was identified as the most burdensome symptom. Bowel symptoms of urgency and diarrhoea and irritable bowel syndrome-type symptoms such as feeling bloated and flatulence were also problematic. Worry was ranked the most burdensome psychological symptom experienced. Symptom burden scores varied according to disease type and disease status, with significant differences found between those with active and inactive disease. CONCLUSIONS: Individuals with inflammatory bowel disease experience a considerable number of symptoms and are burdened by both physical and psychological symptoms, particularly during active disease. Healthcare professionals' focus of assessment needs to be broadened to encompass multiple symptoms. Greater attention needs to be given to fatigue and psychological symptoms.


Assuntos
Efeitos Psicossociais da Doença , Doenças Inflamatórias Intestinais/diagnóstico , Autorrelato , Índice de Gravidade de Doença , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Inquéritos Epidemiológicos , Humanos , Doenças Inflamatórias Intestinais/complicações , Doenças Inflamatórias Intestinais/psicologia , Irlanda , Masculino , Pessoa de Meia-Idade , Adulto Jovem
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