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      Personalized medicine in Europe: not yet personal enough?

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          Abstract

          Background

          Personalized medicine has the potential to allow patients to receive drugs specific to their individual disease, and to increase the efficiency of the healthcare system. There is currently no comprehensive overview of personalized medicine, and this research aims to provide an overview of the concept and definition of personalized medicine in nine European countries.

          Methods

          A targeted literature review of selected health databases and grey literature was conducted to collate information regarding the definition, process, use, funding, impact and challenges associated with personalized medicine. In-depth qualitative interviews were carried out with experts with health technology assessment, clinical provisioning, payer, academic, economic and industry experience, and with patient organizations.

          Results

          We identified a wide range of definitions of personalized medicine, with most studies referring to the use of diagnostics and individual biological information such as genetics and biomarkers. Few studies mentioned patients’ needs, beliefs, behaviour, values, wishes, utilities, environment and circumstances, and there was little evidence in the literature for formal incorporation of patient preferences into the evaluation of new medicines. Most interviewees described approaches to stratification and segmentation of patients based on genetic markers or diagnostics, and few mentioned health-related quality of life.

          Conclusions

          The published literature on personalized medicine is predominantly focused on patient stratification according to individual biological information. Although these approaches are important, incorporation of environmental factors and patients’ preferences in decision making is also needed. In future, personalized medicine should move from treating diseases to managing patients, taking into account all individual factors.

          Electronic supplementary material

          The online version of this article (doi:10.1186/s12913-017-2205-4) contains supplementary material, which is available to authorized users.

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          Most cited references43

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          The impact of family behaviors and communication patterns on chronic illness outcomes: a systematic review.

          In general, social support from family members affects chronic illness outcomes, but evidence on which specific family behaviors are most important to adult patient outcomes has not been summarized. We systematically reviewed studies examining the effect of specific family member behaviors and communication patterns on adult chronic illness self-management and clinical outcomes. Thirty studies meeting inclusion criteria were identified, representing 22 participant cohorts, and including adults with arthritis, chronic cardiovascular disease, diabetes, and/or end stage renal disease. Family emphasis on self-reliance and personal achievement, family cohesion, and attentive responses to symptoms were associated with better patient outcomes. Critical, overprotective, controlling, and distracting family responses to illness management were associated with negative patient outcomes. Study limitations included cross-sectional designs (11 cohorts); however results from longitudinal studies were similar. Findings suggest that future interventions aiming to improve chronic illness outcomes should emphasize increased family use of attentive coping techniques and family support for the patient's autonomous motivation.
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            Long-term outcomes among localized prostate cancer survivors: health-related quality-of-life changes after radical prostatectomy, external radiation, and brachytherapy.

            We sought to elucidate long-term changes in health-related quality-of-life (HRQOL) outcomes by prospectively re-evaluating a well-characterized cohort of prostate cancer (PC) survivors 4 to 8 years after primary treatment. Patients who had been evaluated previously at a median of 2.6 years after radical prostatectomy (RP), external radiation (three-dimensional conformal radiation therapy [3-D CRT]), or brachytherapy (BT) were recontacted at a median of 6.2 years after treatment. The clinical relevance of long-term HRQOL impairment among survivors was established by comparison with controls of similar age. Factors associated with HRQOL changes during this interval were evaluated. Of the 964 eligible men, 709 (73.5%) completed measurable questionnaires. In four domains (urinary irritative-obstructive, urinary incontinence, bowel, and sexual), significant HRQOL differences were detected for at least one of the therapy groups, compared with controls (all P < .05). During the 4-year interval, significant improvement was observed for the urinary irritative-obstructive (P < .0001) and bowel (P < .0001) domains among BT patients, whereas urinary incontinence HRQOL worsened for both the BT (P = .0017) and 3-D CRT (P = .0008) treatment groups. Overall sexual HRQOL deteriorated for the 3-D CRT cohort (P = .0017), as well as for controls (P = .0136). Among RP patients, significant HRQOL changes were not observed. During a 4-year interval from earlier to longer-term phases of PC treatment survivorship, sexual, urinary, and bowel dysfunction remain significant concerns among early-stage PC treatment survivors, compared with control men. Although postprostatectomy HRQOL remains relatively stable during this interval, disease-specific HRQOL continues to evolve among men treated with BT and 3-D CRT.
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              Issues surrounding the health economic evaluation of genomic technologies.

              Genomic interventions could enable improved disease stratification and individually tailored therapies. However, they have had a limited impact on clinical practice to date due to a lack of evidence, particularly economic evidence. This is partly because health economists are yet to reach consensus on whether existing methods are sufficient to evaluate genomic technologies. As different approaches may produce conflicting adoption decisions, clarification is urgently required. This article summarizes the methodological issues associated with conducting economic evaluations of genomic interventions.
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                Author and article information

                Contributors
                +39-050-2218755 , antonello.dipaolo@med.unipi.it , antonello.dipaolo@gmail.com
                francois.sarkozy@fsnb.eu
                bettina.ryll@gmail.com
                uwe.siebert@umit.at
                Journal
                BMC Health Serv Res
                BMC Health Serv Res
                BMC Health Services Research
                BioMed Central (London )
                1472-6963
                19 April 2017
                19 April 2017
                2017
                : 17
                : 289
                Affiliations
                [1 ]ISNI 0000 0004 1757 3729, GRID grid.5395.a, Department of Clinical and Experimental Medicine, Section of Pharmacology, , University of Pisa, ; Via Roma 55, 56126 Pisa, Italy
                [2 ]FSNB Health & Care, Carenity, Paris, France
                [3 ]ISNI 0000 0004 1936 9457, GRID grid.8993.b, Melanoma Patient Network Europe; Evolutionary Biology Centre, , Uppsala University, ; Uppsala, Sweden
                [4 ]ISNI 0000 0000 9734 7019, GRID grid.41719.3a, Department of Public Health, Health Services Research and Health Technology Assessment, , UMIT – University for Health Sciences, Medical Informatics and Technology, ; Hall in Tyrol, Austria
                [5 ]Area of Health Technology Assessment, ONCOTYROL – Center for Personalized Cancer Medicine, Innsbruck, Austria
                Author information
                http://orcid.org/0000-0002-2661-6183
                Article
                2205
                10.1186/s12913-017-2205-4
                5395930
                28424057
                f0fb6866-bb4d-418d-b8a4-8e6b7fa29963
                © The Author(s). 2017

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 14 October 2016
                : 30 March 2017
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/100004336, Novartis;
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2017

                Health & Social care
                personalized medicine,definition,patient stratification,patient preferences

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