Gender, Age, Society, Culture, and the Patient’s Perspective in the Functional Gastrointestinal Disorders
2006; Elsevier BV; Volume: 130; Issue: 5 Linguagem: Inglês
10.1053/j.gastro.2005.09.071
ISSN1528-0012
AutoresLin Chang, Brenda B. Toner, Shin Fukudo, Elspeth Guthrie, G. Richard Locke, Nancy J. Norton, Ami D. Sperber,
Tópico(s)Pathogenesis and Treatment of Hiccups
ResumoPatients with functional gastrointestinal disorders (FGID) often experience emotional distress, a perceived lack of validation, and an unsatisfactory experience with health care providers. A health care provider can provide the patient with a framework in which to understand and legitimize their symptoms, remove self-doubt or blame, and identify factors that contribute to symptoms that the patient can influence or control. This framework can be strengthened with the consideration of various important factors that impact FGID but are often overlooked. These include gender, age, society, culture, and the patient's perspective. There is evidence for sex- and gender-related differences in FGID, particularly irritable bowel syndrome (IBS). Whereas the majority of FGID, including IBS, bloating, constipation, chronic functional abdominal pain, and pelvic floor dysfunction, are more prevalent in women than men, functional esophageal and gastroduodenal disorders do not appear to vary by gender. Limited studies suggest that sex differences in visceral perception, cardioautonomic responses, gastrointestinal motility, and brain activation patterns to visceral stimuli exist in IBS. Gender differences in social factors, psychological symptoms, and response to psychological treatments have not been adequately studied. However, there appears to be a greater clinical response to serotonergic agents developed for IBS in women compared to men. The impact of social and cultural factors on the meaning, expression, and course of FGID are important. The prevalence of IBS appears to be lower in non-Western than Western countries. Although further studies are needed, the existing literature suggests that they are important to consider from both research and clinical perspectives. Patients with functional gastrointestinal disorders (FGID) often experience emotional distress, a perceived lack of validation, and an unsatisfactory experience with health care providers. A health care provider can provide the patient with a framework in which to understand and legitimize their symptoms, remove self-doubt or blame, and identify factors that contribute to symptoms that the patient can influence or control. This framework can be strengthened with the consideration of various important factors that impact FGID but are often overlooked. These include gender, age, society, culture, and the patient's perspective. There is evidence for sex- and gender-related differences in FGID, particularly irritable bowel syndrome (IBS). Whereas the majority of FGID, including IBS, bloating, constipation, chronic functional abdominal pain, and pelvic floor dysfunction, are more prevalent in women than men, functional esophageal and gastroduodenal disorders do not appear to vary by gender. Limited studies suggest that sex differences in visceral perception, cardioautonomic responses, gastrointestinal motility, and brain activation patterns to visceral stimuli exist in IBS. Gender differences in social factors, psychological symptoms, and response to psychological treatments have not been adequately studied. However, there appears to be a greater clinical response to serotonergic agents developed for IBS in women compared to men. The impact of social and cultural factors on the meaning, expression, and course of FGID are important. The prevalence of IBS appears to be lower in non-Western than Western countries. Although further studies are needed, the existing literature suggests that they are important to consider from both research and clinical perspectives. This review has been developed to discuss important variables that have been largely overlooked in the study of functional gastrointestinal disorders (FGID), namely gender, age, society, culture, and the patient's perspective. These variables should be included in the design of research protocols to provide a more comprehensive understanding of these disorders from both a theoretical and a methodological perspective. Failure to consider these variables may result in an overly simplistic and incomplete interpretation of research data. The majority of studies that are discussed focus on irritable bowel syndrome (IBS) because it is the most studied of the FGID. We also recognize that knowledge generation and transfer has been traditionally given to the "expert," who is usually a scientist or clinician rather than the individual who has the specific condition under study. For these reasons, this review starts with the patient's perspective. The illness experience of persons with FGID, such as IBS, is similar to that of those who live with other chronic conditions of uncertain etiology and ambiguous diagnostic criteria. Chronic illnesses are characterized by long-term courses, unpredictable symptom episodes, and disabling effects that are often accompanied by minimally effective treatments, social stigma, and isolation.1Royer A. Life with chronic illness. Praeger, Westport, CT1998Google Scholar Symptoms place demands on families as well as patients, and impair functioning while placing perpetual demands on the individual patient. What matters most to patients with chronic illness is how well they are able to function and how they feel about their day-to-day lives. Whether their symptoms are mild or severe, persons with IBS repeatedly experience unpredictable symptoms of discomfort or pain and altered bowel habits, accompanied by emotional distress over the lack of control of symptoms. Two IBS patient surveys, one qualitative2Bertram S. Kurland M. Lydick E. Locke III, G.R. Yawn B.P. The patient's perspective of irritable bowel syndrome.J Fam Pract. 2001; 50: 521-525PubMed Google Scholar and the other quantitative,3IFFGDIBS in the real world survey. IFFGD, Milwaukee, WI2002Google Scholar demonstrated that symptoms caused major interferences in daily life. Personal sacrifices were common as individuals struggled to accommodate symptoms. Anticipation and worry over when and where the next symptom episode would occur imposed limitations on planning and daily life. Frustration, isolation, and a perceived lack of validation for the disorder were also considered major problems. Patients reported high health care utilization. Yet less than one third reported satisfaction with the drugs and remedies they were using to treat their symptoms. In another study conducted in IBS patients belonging to a health maintenance organization, overall 57% of patients reported satisfactory relief of their bowel symptoms after 6 months of usual medical care, which included education, dietary and lifestyle advice, and medications. However, only 22% reported that symptom severity was reduced by half.4Whitehead W.E. Levy R.L. Von Korff M. Feld A.D. Palsson O.S. Turner M. Drossman D.A. The usual medical care for irritable bowel syndrome.Aliment Pharmacol Ther. 2004; 20: 1305-1315Crossref PubMed Scopus (77) Google Scholar The patient–physician encounter in IBS is challenging and often frustrating to both parties. Patients who seek diagnosis and treatment often report an unsatisfactory or unhelpful experience with health care professionals. Physicians share frustration with the patients over the poorly understood nature of IBS as a disease, as well as lack of treatments.5Dixon-Woods M. Critchley S. Medical and lay views of irritable bowel syndrome.Fam Pract. 2000; 17: 108-113Crossref PubMed Scopus (92) Google Scholar To the patient, unsatisfactory explanations may be experienced as a denial of the legitimacy of their reported symptoms, an implication that negative test results imply an absence of cause, and a lack of understanding or belief in their suffering.6Salmon P. Peters S. Stanley I. Patients' perceptions of medical explanations for somatisation disorders qualitative analysis.BMJ. 1999; 318: 372-376Crossref PubMed Scopus (278) Google Scholar A strong physician–patient relationship is fundamental to successful management. Patients need convincing explanations about the diagnosis and nature of their symptoms that encourages the view of IBS as a legitimate disorder for which a clear pathogenesis has not yet been found.5Dixon-Woods M. Critchley S. Medical and lay views of irritable bowel syndrome.Fam Pract. 2000; 17: 108-113Crossref PubMed Scopus (92) Google Scholar, 6Salmon P. Peters S. Stanley I. Patients' perceptions of medical explanations for somatisation disorders qualitative analysis.BMJ. 1999; 318: 372-376Crossref PubMed Scopus (278) Google Scholar, 7Mabeck C.E. Olesen F. Metaphorically transmitted diseases. How do patients embody medical explanations?.Fam Pract. 1997; 14: 271-278Crossref PubMed Scopus (51) Google Scholar, 8Thompson W.G. Heaton K.W. Smyth G.T. Smyth C. Irritable bowel syndrome in general practice prevalence, characteristics, and referral.Gut. 2000; 46: 78-82Crossref PubMed Scopus (419) Google Scholar They also need information about how it will influence their ongoing daily lives.7Mabeck C.E. Olesen F. Metaphorically transmitted diseases. How do patients embody medical explanations?.Fam Pract. 1997; 14: 271-278Crossref PubMed Scopus (51) Google Scholar Physicians can help by eliciting and addressing patient concerns9Kennedy A. Robinson A. Rogers A. Incorporating patients' views and experiences of life with IBS in the development of an evidence based self-help guidebook.Patient Educ Couns. 2003; 50: 303-310Abstract Full Text Full Text PDF PubMed Scopus (59) Google Scholar; offering a positive diagnosis; providing clear, understandable, and legitimizing explanations of the disorder; and helping to identify factors within the context of the patient's own illness that they can influence and control. Self-care is integral to coping with chronic IBS in daily life.5Dixon-Woods M. Critchley S. Medical and lay views of irritable bowel syndrome.Fam Pract. 2000; 17: 108-113Crossref PubMed Scopus (92) Google Scholar Empowerment provides the patient with a framework in which to understand and legitimize the symptoms, remove self-doubt or blame, and identify internal or external factors that may contribute to symptoms that the patient can influence or control within the context of his or her own experiences.6Salmon P. Peters S. Stanley I. Patients' perceptions of medical explanations for somatisation disorders qualitative analysis.BMJ. 1999; 318: 372-376Crossref PubMed Scopus (278) Google Scholar Although the term patient–physician is used, it refers to all health care providers. Sex is generally used to refer to a person's biological femaleness or maleness. Gender is generally used to refer to the nonbiological aspects of being female or male, in other words, the social or cultural expectations associated with femininity or masculinity.10Wizeman T.M. Pardue M.L.E. Institute of MedicineExploring the biological contributions to human health. National Academies Press, Washington, DC2001Google Scholar However, we know that most differences between males and females are a function of the interaction between biology and environment. In this review, gender is used as a more inclusive term. Sex is used for the classification of individuals based on their reproductive organs and functions assigned by chromosomal complement. Gender roles are based on sex stereotypes, which are socially shared beliefs that biological sex determines certain qualities.10Wizeman T.M. Pardue M.L.E. Institute of MedicineExploring the biological contributions to human health. National Academies Press, Washington, DC2001Google Scholar Symptoms of FGID are quite prevalent in the community. The effects of sex on the prevalences of FGID are summarized in Table 1. The majority of FGID are more prevalent in women than men. Women are more likely to report globus, dysphagia, IBS, bloating, constipation, chronic functional abdominal pain, sphincter of Oddi dysfunction, fecal incontinence (at home), functional anorectal pain, and pelvic floor dysfunction. Additional information on these FGID is provided in the other articles. In one study, the prevalence of IBS in the United States was equal between men and women,11Talley N.J. Zinsmeister A.R. Van Dyke C. Melton III, L.J. Epidemiology of colonic symptoms and the irritable bowel syndrome.Gastroenterology. 1991; 101: 927-934PubMed Google Scholar whereas the majority reported female-to-male ratios of 2–3:1.12Drossman D.A. Li Z. Andruzzi E. Temple R. Talley N.J. Thompson W.G. Whitehead W.E. Janssens J. Fruch-Jensen P. 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