The next step in guideline development - Incorporating patient preferences

Toronto Health Economics and Technology Assessment Collaborative, Toronto General Research Institute, and University of Toronto, Toronto, Ontario, Canada.
JAMA The Journal of the American Medical Association (Impact Factor: 30.39). 07/2008; 300(4):436-8. DOI: 10.1001/jama.300.4.436
Source: PubMed
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    ABSTRACT: Aims: Opioid substitution therapy (OST) is an evidence-based HIV prevention strategy for people who inject drugs (PWIDs). Yet, only 2.7% of Ukraine’s estimated 310,000 PWIDs receive it despite free treatment since 2004. The multi-level barriers to entering OST among opioid-dependent PWIDs have not been examined in Ukraine. Methods: A multi-year mixed methods implementation science project included focus group discussions with 199 PWIDs in five major Ukrainian cities in 2013 covering drug treatment attitudes, beliefs, knowledge and experiences with OST. Data were transcribed, translated into English and coded. Coded segments related to OST access, entry, knowledge, beliefs and attitudes were analyzed among 41 PWIDs who were eligible for but had never received OST. Findings: A number of programmatic and structural barriers were mentioned by participants as barriers to entry to OST, including compulsory drug user registration, waiting lists and limited number of treatment slots. Participants also voiced strong negative attitudes and beliefs about OST, especially methadone. Their perceptions about methadone’s side effects as well as the stigma of being a methadone client were expressed as obstacles to treatment. Conclusions: Despite expressed interest in treatment, Ukrainian OST-naïve PWIDs evade OST for reasons that can be addressed through changes in program-level and governmental policies and social-marketing campaigns. Voiced OST barriers can effectively inform public health and policy directives related to HIV prevention and treatment in Ukraine to improve evidence-based treatment access and availability.
    Drugs: Education Prevention and Policy 03/2015; DOI:10.3109/09687637.2015.1016397 · 0.53 Impact Factor
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    ABSTRACT: Purpose Treatment decisions in early breast cancer can revolve around type of surgery and whether or not to have adjuvant systemic therapy. This systematic review aims to give an overview of patient self-reported factors affecting preferences for breast conserving surgery (BCS) versus mastectomy (MAST), the minimal benefit patients require from adjuvant chemotherapy (aCT) and/or adjuvant hormonal therapy (aHT) to consider it worthwhile, and factors influencing this minimally-required benefit. Methods PubMed and EMBASE were searched for relevant articles. Two reviewers independently selected articles and extracted data. Results We identified 15 studies on surgical and six on adjuvant systemic treatment decision-making. Factors affecting patient preference for BCS most frequently related to body image (44%), while factors influencing preference for MAST most often related to survival/recurrence (46%). To make adjuvant systemic therapy worthwhile, the median required absolute increase in survival rate was 0.1–10% and the median required additional life expectancy was 1 day to 5 years. The range of individual preferences was wide within studies. Participants in the aHT studies required larger median benefits than those in the aCT studies. Factors associated with judging smaller benefits sufficient most often (44%) related to quality of life (e.g., less treatment toxicity). Conclusion Decisive factors in patients’ preferences for surgery type commonly relate to body image and survival/recurrence. Most participants judged small to moderate benefits sufficient to consider adjuvant systemic therapy worthwhile, but individual preferences varied widely. Clinicians should therefore consider the patient’s preferences to tailor their treatment recommendations accordingly.
    Cancer Treatment Reviews 09/2014; 40(8). DOI:10.1016/j.ctrv.2014.06.007 · 6.47 Impact Factor
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    ABSTRACT: Evidence-based medicine (EBM), which advocates clinical decisions are based on evidence from medical research, has become an important ideal pursued in contemporary medicine. EBM relies on two key principles: the evidence hierarchy and clinical practice guidelines. Both principles have been fiercely criticized, and critics often invoke the term ‘Cookbook medicine’ to stress the dangers and limitations of EBM. This article reviews diverse critical literature on EBM by drawing on the newly proposed subfield of “Sociology of Standards.” It reframes the manifold critiques on EBM as concerns over the harm that standardization can bring about and demonstrates how empirical sociological studies have contributed to a better understanding of EBM's justificatory basis and regulatory impact. First, it discusses the ‘politics of Evidence’ inherent in EBM's epistemological basis, secondly, explores the actual ‘evidence-base’ of its tools in practice, and third, addresses sociological debates on EBM's regulatory impact. In the concluding section, I argue that a ‘Sociology of Standards’ opens up new research avenues by allowing scholars to challenge – or at least empirically investigate – a host of dichotomies. By doing so, the role of the patient in EBM can be reframed to allow for more productive empirical investigations.
    Sociology Compass 06/2014; 8(6):823–836. DOI:10.1111/soc4.12184