How do guideline developers identify, incorporate and report patient preferences? An international cross-sectional survey.

BACKGROUND: Guidelines based on patient preferences differ from those developed solely by clinicians and may promote patient adherence to guideline recommendations. There is scant evidence on how to develop patient-informed guidelines. This study aimed to describe how guideline developers identify, incorporate and report patient preferences. METHODS: We employed a descriptive cross-sectional survey design. Eligible organizations were non-profit agencies who developed at least one guideline in the past five years and had considered patient preferences in guideline development. We identified developers through the Guidelines International Network and publicly-available guideline repositories, administered the survey online, and used summary statistics to report results. RESULTS: The response rate was 18.3% (52/284). Respondents included professional societies, and government, academic, charitable and healthcare delivery organizations from 18 countries with at least 1 to ≥6 years of experience generating patient-informed guidelines. Organizations most frequently identified preferences through patient panelists (86.5%) and published research (84.6%). Most organizations (48, 92.3%) used multiple approaches to identify preferences (median 3, range 1 to 5). Most often, organizations used preferences to generate recommendations (82.7%) or establish guideline questions (73.1%). Few organizations explicitly reported preferences; instead, they implicitly embedded preferences in guideline recommendations (82.7%), questions (73.1%), or point-of-care communication tools (61.5%). Most developers had little capacity to generate patient-informed guidelines. Few offered training to patients (30.8%), or had dedicated funding (28.9%), managers (9.6%) or staff (9.6%). Respondents identified numerous barriers to identifying preferences. They also identified processes, resources and clinician- and patient-strategies that can facilitate the development of patient-informed guidelines. In contrast to identifying preferences, developers noted few approaches for, or barriers or facilitators of incorporating or reporting preferences. CONCLUSIONS: Developers emphasized the need for knowledge on how to identify, incorporate and report patient preferences in guidelines. In particular, how to use patient preferences to formulate recommendations, and transparently report patient preferences and the influence of preferences on guidelines is unknown. Still, insights from responding developers may help others who may be struggling to generate guidelines informed by patient preferences.

Diagnosing and treating premenstrual syndrome in five western nations.

Premenstrual syndrome (PMS) and its derivative Premenstrual Dysphoric Disorder (PMDD) are controversial medical diagnoses. On one hand they are ubiquitous in English-language cultures; on the other they are for many emblematic of unnecessary medicalization of natural physiological processes. In this paper, we use data produced by IMS, a health care information and research firm, to analyze office-based medical practice related to PMS/PMDD in five countries. We come to several conclusions: 1. Relatively few doctors in any country diagnose women as suffering from PMS/PMDD, despite significant national variations in frequency of diagnosis; 2. Women diagnosed with this condition are usually prescribed a medication no matter what kind of specialist they see; and 3. In North America and the UK, practitioners generally follow USA practice guidelines which favour use of anti-depressive drugs like SSRIs but this is not the case in France and Germany which exhibit unique prescription patterns. In France hormonal treatment and analgesics dominate; in Germany the plant extract Vitex agnus-castus, considered an alternative therapy in much of the English-speaking world, is most common. We go on to discuss the relevance of these conclusions to discussions of variations in medical practices, to the existing PMS literature that claims high rates of prevalence for this condition, and to recent studies of "demedicalization" in certain domains.

The biomedical standardization of premenstrual syndrome.

This essay traces the history of premenstrual syndrome (PMS) in French, British, and American medical literature from 1950 to 2004. Aetiological theories, treatments and diagnostic criteria have varied over time and place, reflecting local conditions and changing notions of objectivity and evidence. During the 1970s researchers in each nation utilised different research strategies to overcome variation and contradictory results characteristic of PMS research. Since the 1980s, attempts have been made to standardise research internationally through prospective daily rating questionnaires that diagnose and measure PMS. Amidst controversy, a psychiatric reformulation of the syndrome was included in the Diagnostic and Statistical Manual of Mental Disorders (DSM). While the diagnostic criteria for this psychiatric category, now called premenstrual dysphoric disorder (PMDD), are widely accepted for research purposes, efforts to transfer them to medical practice have been less successful. PMDD remains a contested disease construct.

Systematically assessing the situational relevance of electronic knowledge resources: a mixed methods study.

UNLABELLED: Electronic Knowledge Resources (EKRs) are increasingly used by physicians, but their situational relevance has not been systematically examined. OBJECTIVE: Systematically scrutinize the situational relevance of EKR-derived information items in and outside clinical settings. BACKGROUND: Physicians use EKRs to accomplish four cognitive objectives (C1-4), and three organizational objectives (O1-3): (C1) Answer questions/solve problems/support decision-making in a clinical context; (C2) fulfill educational-research objectives; (C3) search for personal interest or curiosity; (C4) overcome limits of human memory; (O1) share information with patients, families, or caregivers; (O2) exchange information with other health professionals; (O3) plan-manage-monitor tasks with other health professionals. METHODS: Longitudinal mixed methods multiple case study: Cases were 17 residents' critical searches for information, using a commercial EKR, during a 2-month block of family practice. Usage data were automatically recorded. Each "opened" item of information was linked to an impact assessment questionnaire, and 1,981 evaluations of items were documented. Interviews with residents were guided by log files, which tracked use and impact of EKR-derived information items. Thematic analysis identified 156 critical searches linked to 877 information items. For each case, qualitative data were assigned to one of the seven proposed objectives. RESULTS: Residents achieved their search objectives in 85.9% of cases (situational relevance). Additional sources of information were sought in 52.6% of cases. Results support the seven proposed objectives, levels of comparative relevance (less, equally, more), and levels of stimulation of learning and knowledge (individual, organizational). CONCLUSION: Our method of systematic assessment may contribute to user-based evaluation of EKRs.

Large Contaminated Ventral Hernia Repair Using Component Separation Technique with Synthetic Mesh.

BACKGROUND: Large ventral hernia repair represents a major reconstructive surgical challenge, especially under contaminated conditions. Synthetic mesh is usually avoided in these circumstances because of fear of mesh infection, although evidence is outdated and does not regard new materials and techniques. The authors evaluated the safety of synthetic mesh in large contaminated ventral hernia repair. METHODS: All large ventral hernias repaired with the components separation technique and polypropylene mesh were included in analysis. Primary outcomes were wound and medical complications, with a focus on surgical-site infection and mesh removal. For risk analysis, patients were stratified by surgical wound class, Ventral Hernia Working Group grade, and modified Ventral Hernia Working Group grade. RESULTS: One hundred thirty-seven patients were included, with a mean age of 58.6 years, mean body mass index of 26.6 cm2, and mean defect size of 235.6 cm2. Surgical-site infection and total wound complication rates were 16.1 and 48.9 percent, respectively. The surgical wound class distribution of surgical-site infections was as follows: clean, five of 56 (9.1 percent); clean-contaminated, five of 34 (14.7 percent); contaminated, three of 19 (15.8 percent); and dirty/infected, nine of 28 (32.1 percent). Seven meshes (5.1 percent) needed removal, two after clean repairs, three after clean-contaminated repairs, and two after dirty/infected repairs. Surgical wound class (OR, 1.77; 95 percent CI, 1.20 to 2.61) and Ventral Hernia Working Group grade (OR, 2.31; 95 percent CI, 1.24 to 4.28) were predictors of surgical-site infection. CONCLUSION: Rate of surgical-site infection after large contaminated ventral hernia repair with synthetic mesh is considerable but with a low mesh removal rate.

How can clinical practice guidelines be adapted to facilitate shared decision making? A qualitative key-informant study.

BACKGROUND: To explore how clinical practice guidelines can be adapted to facilitate shared decision making. METHODS: This was a qualitative key-informant study with group discussions and semi-structured interviews. First, 75 experts in guideline development or shared decision making participated in group discussions at two international conferences. Next, health professionals known as experts in depression or breast cancer, experts on clinical practice guidelines and/or shared decision making, and patient representatives were interviewed (N=20). Using illustrative treatment decisions on depression or breast cancer, we asked the interviewees to indicate as specifically as they could how guidelines could be used to facilitate shared decision making. RESULTS: Interviewees suggested some generic strategies, namely to include a separate chapter on the importance of shared decision making, to use language that encourages patient involvement, and to develop patient versions of guidelines. Recommendation-specific strategies, related to specific decision points in the guideline, were also suggested: These include structuring the presentation of healthcare options to increase professionals' option awareness; structuring the deliberation process between professionals and patients; and providing relevant patient support tools embedded at important decision points in the guideline. CONCLUSIONS: This study resulted in an overview of strategies to adapt clinical practice guidelines to facilitate shared decision making. Some strategies seemed more contentious than others. Future research should assess the feasibility and impact of these strategies to make clinical practice guidelines more conducive to facilitate shared decision making.

Pragmatic evidence and textual arrangements: a case study of French clinical cancer guidelines.

Both critics and supporters of evidence-based medicine view clinical practice guidelines as an important component of this self-defined "new paradigm" whose goal is to rationalize medicine by grounding clinical decision-making in a careful assessment of the medical literature. We present an analysis of the debates within a guideline development group (GDG) that led to the drafting, revision and publication of a French cancer guideline. Our ethnographic approach focuses on the various aspects of the dispositif (or apparatus) that defines the nature and roles of participants, procedures, topics and resources within the GDG. Debates between GDG members are framed (but not dictated) by procedural and methodological rules as well as by the reflexive critical contributions of the GDG members themselves, who justify their (tentative) recommendations by relating to its (possible or intended) audiences. Guideline production work cannot be reduced to an exchange of arguments and to consensus-seeking between pre-defined professional interests. It is about the production of a text in the material sense of the term, i.e. as a set of sentences, paragraphs, statements and formulations that GDG members constantly readjust and rearrange until closure is achieved. As such, guidelines partake in the emergence and stabilization of a new configuration of biomedical knowledge and practices grounded in the establishment of mutually constitutive links between two processes: on the one hand, the re-formatting of clinical trials into a device for producing carefully monitored evidence statements targeting specific populations and clinical indications and, on the other hand, the increasingly pervasive role of regulatory processes.

The emergence of clinical practice guidelines.

Clinical practice guidelines are now ubiquitous. This article describes the emergence of such guidelines in a way that differs from the two dominant explanations, one focusing on administrative cost-cutting and the other on the need to protect collective professional autonomy. Instead, this article argues that the spread of guidelines represents a new regulation of medical care resulting from a confluence of circumstances that mobilized many different groups. Although the regulation of quality has traditionally been based on the standardization of professional credentials, since the 1960s it has intensified and been supplemented by efforts to standardize the use of medical procedures. This shift is related to the spread of standardization within medicine and especially in research, public health, and large bureaucratic health care organizations.