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1.
Colorectal Dis ; 26(5): 987-993, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38485203

RESUMO

AIM: When making anastomotic decisions in rectal cancer surgery, surgeons must consider the risk of anastomotic leakage, which bears implications for the patient's quality of life, cancer recurrence and, potentially, death. The aim of this study was to investigate the views of colorectal surgeons on how their individual attributes (e.g. experience, personality traits) may influence their decision-making and experience of complications. METHOD: This qualitative study used individual interviews for data collection. Purposive sampling was used to invite certified UK-based colorectal surgeons to participate. Participants were recruited until ongoing data review indicated no new codes were generated, suggesting data sufficiency. Data were analysed thematically following Braun and Clarke's six-step framework. RESULTS: Seventeen colorectal surgeons (eight female, nine male) participated. Two key themes with relevant subthemes were identified: (1) personal attributes influencing variation in decision-making (e.g. demographics, personality) and (2) the influence of complications on decision-making. Surgeons described variation in the management of complications based upon their personal attributes, which included factors such as gender, experience and subspeciality interests. Surgeons described the detrimental impact of anastomotic leakage on their mental and physical health. Experience of anastomotic leakage influences future decision-making and is associated with changes in practice even when a technical error is not identified. CONCLUSION: Colorectal surgeons consider anastomotic leaks to be personal 'failures', which has a negative impact on surgeon welfare. Better understanding of how surgeons make difficult decisions, and how surgeons respond to and learn from complications, is necessary to identify 'personalized' methods of supporting surgeons at all career stages, which may improve patient outcomes.


Assuntos
Fístula Anastomótica , Tomada de Decisão Clínica , Cirurgia Colorretal , Pesquisa Qualitativa , Neoplasias Retais , Cirurgiões , Humanos , Feminino , Masculino , Cirurgiões/psicologia , Cirurgia Colorretal/psicologia , Neoplasias Retais/cirurgia , Neoplasias Retais/psicologia , Pessoa de Meia-Idade , Fístula Anastomótica/etiologia , Fístula Anastomótica/psicologia , Adulto , Atitude do Pessoal de Saúde , Complicações Pós-Operatórias/psicologia , Complicações Pós-Operatórias/etiologia , Qualidade de Vida , Reino Unido , Entrevistas como Assunto , Tomada de Decisões
2.
Health Technol Assess ; 26(41): 1-118, 2022 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-36305390

RESUMO

BACKGROUND: Corticosteroids are a mainstay of the treatment of moderately severe relapses of ulcerative colitis, yet almost 50% of patients do not respond fully to these and risk prolonged steroid use and side effects. There is a lack of clarity about the definitions of steroid resistance, the optimum choice of treatment, and patient and health-care professional treatment preferences. OBJECTIVES: The overall aim of this research was to understand how steroid-resistant ulcerative colitis is managed in adult secondary care and how current practice compares with patient and health-care professional preferences. DESIGN: A mixed-methods study, including an online survey, qualitative interviews and discrete choice experiments. SETTING: NHS inflammatory bowel disease services in the UK. PARTICIPANTS: Adults with ulcerative colitis and health-care professionals treating inflammatory bowel disease. RESULTS: We carried out a survey of health-care professionals (n = 168), qualitative interviews with health-care professionals (n = 20) and patients (n = 33), discrete choice experiments with health-care professionals (n = 116) and patients (n = 115), and a multistakeholder workshop (n = 9). The interviews with and survey of health-care professionals showed that most health-care professionals define steroid resistance as an incomplete response to 40 mg per day of prednisolone after 2 weeks. The survey also found that anti-tumour necrosis factor drugs (particularly infliximab) are the most frequently offered drugs across most steroid-resistant (and steroid-dependent) patient scenarios, but they are less frequently offered to thiopurine-naive patients. Patient interviews identified several factors influencing their treatment choices, including effectiveness of treatment, recommendations from health-care professionals, route of administration and side effects. Over time, depending on the severity and duration of symptoms and, crucially, as medical treatment options become exhausted, patients are willing to try alternative treatments and, eventually, to undergo surgery. The discrete choice experiments found that the probability of remission and of side effects strongly influences the treatment choices of both patients and health-care professionals. Patients are less likely to choose a treatment that takes longer to improve symptoms. Health-care professionals are willing to make difficult compromises by tolerating greater safety risks in exchange for therapeutic benefits. The treatments ranked most positively by patients were infliximab and tofacitinib (each preferred by 38% of patients), and the predicted probability of uptake by health-care professionals was greatest for infliximab (62%). LIMITATIONS: The survey and the discrete choice experiments with patients and health-care professionals are limited by their relatively small sample sizes. The qualitative studies are subject to selection bias. The timing of the different substudies, both before and during the COVID-19 pandemic, is a potential limitation. CONCLUSIONS: We have identified factors influencing treatment decisions for steroid-resistant ulcerative colitis and the characteristics to consider when choosing treatments to evaluate in future randomised controlled trials. The findings may be used to improve discussions between patients and health-care professionals when they review treatment options for steroid-resistant ulcerative colitis. FUTURE WORK: This research highlights the need for consensus work to establish an agreed definition of steroid resistance in ulcerative colitis and a greater understanding of the optimal use of tofacitinib and surgery for this patient group. A randomised controlled trial comparing infliximab with tofacitinib is also recommended. FUNDING: This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 26, No. 41. See the NIHR Journals Library website for further project information.


Steroids are one of the main treatments for ulcerative colitis; however, steroids work well for only about 50% of people who take them. There are many other treatments that can be given when steroids do not work, but evidence is limited about how these treatments are best used. To carry out better research about the best treatment options and to improve clinical practice in the future, this study aimed to find out how adults with steroid-resistant ulcerative colitis are managed in hospital and why patients and health-care professionals prefer different treatments. The study combined various methods of research, including an online survey of health-care professionals (n = 168), interviews with health-care professionals (n = 20) and patients (n = 33), a survey of health-care professionals (n = 116) and patients (n = 115) to ask them about treatment preferences, and a multistakeholder workshop (n = 9). The interviews with and survey of health-care professionals found that most health-care professionals define steroid resistance as an incomplete response to 40 mg per day of prednisolone after 2 weeks. The survey also found that the most frequently offered drugs are anti-tumour necrosis factor drugs (particularly infliximab). Patient interviews found that several factors influenced treatment choices, including effectiveness of treament, guidance from health-care professionals, route of administration and side effects. Patients were willing to try alternative treatments and surgery over time. The survey found that a higher level of remission and a lower chance of side effects strongly influenced treatment choices. Patients are less likely to choose a treatment that takes longer to improve symptoms. Health-care professionals are willing to make difficult compromises by tolerating greater safety risks in exchange for therapeutic benefits. Infliximab and tofacitinib were ranked most positively by patients, and the predicted uptake by health-care professionals was greatest for infliximab. The results of this study help improve understanding of why people choose certain treatments, improve decision-making in partnership and inform the design of future research.


Assuntos
COVID-19 , Colite Ulcerativa , Adulto , Humanos , Colite Ulcerativa/tratamento farmacológico , Colite Ulcerativa/cirurgia , Infliximab/uso terapêutico , Preferência do Paciente , Pandemias , Recidiva Local de Neoplasia , Prednisolona/uso terapêutico , Análise Custo-Benefício , Ensaios Clínicos Controlados Aleatórios como Assunto
3.
Colorectal Dis ; 24(12): 1613-1615, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36111427
4.
Br J Surg ; 109(11): 1156-1163, 2022 10 14.
Artigo em Inglês | MEDLINE | ID: mdl-35851801

RESUMO

BACKGROUND: Decision-making under uncertainty may be influenced by an individual's personality. The primary aim was to explore associations between surgeon personality traits and colorectal anastomotic decision-making. METHODS: Colorectal surgeons worldwide participated in a two-part online survey. Part 1 evaluated surgeon characteristics using the Big Five Inventory to measure personality (five domains: agreeableness; conscientiousness; extraversion; emotional stability; openness) in response to scenarios presented in Part 2 involving anastomotic decisions (i.e. rejoining the bowel with/without temporary stomas, or permanent diversion with end colostomy). Anastomotic decisions were compared using repeated-measure ANOVA. Mean scores of traits domains were compared with normative data using two-tailed t tests. RESULTS: In total, 186 surgeons participated, with 127 surgeons completing both parts of the survey (68.3 per cent). One hundred and thirty-one surgeons were male (70.4 per cent) and 144 were based in Europe (77.4 per cent). Forty-one per cent (77 surgeons) had begun independent practice within the last 5 years. Surgeon personality differed from the general population, with statistically significantly higher levels of emotional stability (3.25 versus 2.97 respectively), lower levels of agreeableness (3.03 versus 3.74), extraversion (2.81 versus 3.38) and openness (3.19 versus 3.67), and similar levels of conscientiousness (3.42 versus 3.40 (all P <0.001)). Female surgeons had significantly lower levels of openness (P <0.001) than males (3.06 versus 3.25). Personality was associated with anastomotic decision-making in specific scenarios. CONCLUSION: Colorectal surgeons have different personality traits from the general population. Certain traits seem to be associated with anastomotic decision-making but only in specific scenarios. Further exploration of the association of personality, risk-taking, and decision-making in surgery is necessary.


Assuntos
Neoplasias Colorretais , Cirurgiões , Anastomose Cirúrgica , Feminino , Humanos , Masculino , Personalidade , Cirurgiões/psicologia , Inquéritos e Questionários
5.
Scand J Gastroenterol ; 57(7): 797-806, 2022 07.
Artigo em Inglês | MEDLINE | ID: mdl-35142585

RESUMO

BACKGROUND AND AIM: Understanding treatment preferences in those patients who are not responding to corticosteroids for ulcerative colitis is important in informing treatment choices. This study aimed to assess the relative importance of treatment characteristics to patients by conducting a discrete-choice experiment. METHODS: Patients completed the questionnaire online. All data were collected between September and December 2020. Participants were shown 13 discrete-choice experiment tasks - a series of side-by-side comparisons of competing, hypothetical treatment characteristics and asked to select a preferred treatment. Survey responses were analysed using descriptive statistics and regression analyses. RESULTS: 115 patients completed the study. Patient preferences were strongest for treatments with a lower chance of side effects, this attribute had the most influence on the choice of treatment patients preferred. The second most important attribute was an improvement in maintaining remission. Conversely, route and frequency of administration were least important on the choice of treatment patients preferred. Respondents were willing to make trade offs and accept treatment benefits to compensate them for receiving a treatment with a less desirable attribute level. Participants were willing to accept a larger benefit of 45% improvement in maintenance of remission to accept a treatment with a higher probability of side effects. The benefit required was smaller with a 10% improvement in remission required to accept a treatment with a lower probability of side effects. CONCLUSION: Quantifying preferences helps to identify and prioritise treatment characteristics that are important to patients. The results highlight the importance of careful discussion of side effects, including the magnitude of risk, using visualisation tools during a patient consultation to support decisions.


Assuntos
Colite Ulcerativa , Preferência do Paciente , Comportamento de Escolha , Colite Ulcerativa/tratamento farmacológico , Humanos , Esteroides , Inquéritos e Questionários
6.
Colorectal Dis ; 23(6): 1524-1551, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33615666

RESUMO

AIM: Discussions regarding sex after colorectal and pelvic floor surgery are often overlooked by clinicians. This is the first patient designed and delivered study to explore sexual function and practices after colorectal surgery. The aim was to explore the questions about sex that matter to patients and their partners following colorectal or pelvic floor surgery through a patient and public involvement survey. The results of this work will underpin the creation of a sex patient reported outcome measure. METHODS: An anonymous online survey tool (Survey Monkey™) was disseminated via social media (Twitter, Facebook). Thematic analysis was applied to 130 free text comments posted by participants to identify key themes. RESULTS: Some 632 individuals completed the survey. Most respondents were women (80% n = 507), 49.5% (n = 312) were married and 14% (n = 87) identified as LGBT+ (lesbian, gay, bisexual and transgender +). Indications for surgery varied: 34% were treated for ulcerative colitis (n = 214); 31% Crohn's (n = 196); 17% (n = 109) cancer; and 17% (n = 110) for perianal fistula. For patients who had a stoma formed (85%, n = 540), over half (51%, n = 324) lived with their stoma for 1-5 years. Respondents reported substantial alterations to their preferences for sexual positions, sexual activity and body confidence following surgery. Most respondents indicated that they were not offered advice about sex by a healthcare professional. CONCLUSIONS: The survey showed a substantial impact on the mechanics of sex following colorectal surgery. Few patients were offered preoperative information regarding sex, which has implications for informed consent. This study demonstrates a clear unmet need, voiced by patients, that open dialogue is necessary preoperatively to discuss sexual (dys)function.


Assuntos
Neoplasias Colorretais , Distúrbios do Assoalho Pélvico , Neoplasias Colorretais/cirurgia , Feminino , Humanos , Diafragma da Pelve/cirurgia , Comportamento Sexual , Inquéritos e Questionários
7.
Front Surg ; 8: 769938, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-35004837

RESUMO

Introduction: Hernias are one of the most common surgical diagnoses, and general surgical operations are performed. The involvement of patients in the decision making can be limited. The aim of this study was to explore the perspectives of patients around their hernia and its management, to aid future planning of hernia services to maximise patient experience, and good outcomes for the patient. Methods: A SurveyMonkey questionnaire was developed by patient advocates with some advice from surgeons. It was promoted on Twitter and Facebook, such as all found "hernia help" groups on these platforms over a 6-week period during the summer of 2020. Demographics, the reasons for seeking a hernia repair, decision making around the choice of surgeon, hospital, mesh type, pre-habilitation, complications, and participation in a hernia registry were collected. Results: In total, 397 questionnaires were completed in the study period. The majority of cases were from English speaking countries. There was a strong request for hernia specialists to perform the surgery, to have detailed knowledge about all aspects of hernia disease and its management, such as no operation and non-mesh options. Chronic pain was the most feared complication. The desire for knowledge about the effect of the hernia and surgery on the sexual function in all age groups was a notable finding. Pre-habilitation and a hernia registry participation were well-supported. Conclusions: Hernia repair is a quality of life surgery. Whether awaiting surgery or having had surgery with a good or bad outcome, patients want information about their condition and treatment, such as the effect on aspects of life, such as sex, and they wish greater involvement in their management decisions. Patients want their surgery by surgeons who can also manage complications of such surgery or recommend further treatment. A large group of "hernia surgery injured" patients feel abandoned by their general surgeon when complications ensue.

9.
Br J Nurs ; 28(22): S26-S33, 2019 Dec 12.
Artigo em Inglês | MEDLINE | ID: mdl-31835944

RESUMO

BACKGROUND: support garments are commonly worn by people with a urostomy but there are no published data about their experiences of doing so. AIMS: to identify the views of people living with a urostomy on the role of support garments. METHODS: a cross-sectional survey of the stoma population's experiences of support garments was conducted in 2018. Recruitment was by social media. The free-text responses provided by a sub-sample of 58 people out of 103 respondents with a urostomy, were analysed. FINDINGS: thematic analysis revealed four themes: physical self-management; psychosocial self-management; lifestyle; and healthcare advice and support. There were mixed feelings about the value of support garments. Many cited a sense of reassurance and confidence and being able to be more sociable and active; others reported discomfort and uncertainty about their value. CONCLUSION: these findings add new understanding of experiences of support garments and provide novel theoretical insights about life with a urostomy.


Assuntos
Vestuário , Estomia , Derivação Urinária , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
10.
BMJ Open Gastroenterol ; 6(1): e000291, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31275585

RESUMO

AIM: To explore the experiences of support garments when adjusting to bodily change following bowel stoma formation. DESIGN: Thematic analyses of free-text responses in a cross-sectional survey of the stoma population in 2018. METHODS: Free-text responses were invited so that respondents could describe their experiences in more detail. A process of induction was chosen to allow for themes to emerge directly from the data. The concept 'embodiment' was used as a theoretical framework during interpretation. RESULTS: 1425 people with a bowel stoma responded to the survey, of whom 598 provided free-text responses. Four themes about experiences of support garments in the context of changed bodily experiences following stoma formation were identified: body complications, which is about experiences of using support garments to prevent or self-manage parastomal hernia; body appearance, which is about hiding the stoma and stoma appliance; body function, which is about managing stoma appliance complications; and body sensation, which is mainly about negative experiences of ill-fitting garments. CONCLUSION: Support garments can be understood as items that are used by people during an ongoing process of adjusting to bodily changes following stoma formation and as part of an ongoing process of reconstructing new embodied selves. IMPACT: This is the first study to explore people's experiences of support garments following bowel stoma formation. Support garments are used in the self-management of body complications, appearance, function and sensations. Stoma nurses may draw on the findings of this study to advise patients about the benefits of garments for adjusting to bodily change, and garment suppliers should address people's negative experiences by improving garments.

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