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: 35.29). 07/2008; 300(4):436-8. DOI: 10.1001/jama.300.4.436
Source: PubMed
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Available from: Murray Krahn, Nov 25, 2015
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    • "An alternative approach would be to better-inform PWIDs about their treatment options, through the creation of effective decision aids that provide objective information and motivation that highlight the relative risk and benefits of treatment (O'Connor et al., 2009). Decision aids that better inform patients are effective even for patients with low-health literacy (Coulter & Ellins, 2007; Krahn & Naglie, 2008; Padon & Baren, 2011), but objective ones are currently not available for patients with opioid dependence. Such decision aids can actively engage patients in the decision-making process experience and empower them to improved treatment engagement . "
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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.
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    • "Breast cancer patients' involvement in treatment decisions has been shown to improve their satisfaction [7] and short and long-term well-being [8] and to increase their level of comfort with the decision made [9]. More recently, integration of data on patients' preferences into clinical treatment guidelines has been emphasized [10] [11]. "
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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.
    Full-text · Article · Sep 2014 · Cancer Treatment Reviews
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    • "The integration of preferences in medicine is discussed in different works [1] [2] [3] [4], and preference was defined as the desirability of a health-related outcome, process, or treatment choice [4]. Two approaches have been developed in the literature: 1) a quantitative approach [5] [6] where preferences are expressed by means of a utility function, the option with the maximal utility is considered the best one, 2) a qualitative approach [7] [8] [9] where relative preferences are expressed by ordering the options. "
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    ABSTRACT: Medical decision making, such as choosing which drugs to prescribe, requires to consider mandatory constraints, e.g. absolute contraindications, but also preferences that may not be satisfiable, e.g. guideline recommendations or patient preferences. The major problem is that these preferences are complex, numerous and come from various sources. The considered criteria are often conflicting and the number of decisions is too large to be explicitly handled. In this paper, we propose a framework for encoding medical preferences using a new connective, called ordered disjunction symbolized by ~×. Intuitively, the preference "Diuretic~×Betablocker means: "Prescribe a Diuretic if possible, but if this is not possible, then prescribe a Betablocker". We give an inference method for reasoning about the preferences and we show how this framework can be applied to a part of a guideline for hypertension.
    Full-text · Article · Aug 2014 · Studies in health technology and informatics
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