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      Shared Decision-Making in Growth Hormone Therapy—Implications for Patient Care

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          Abstract

          Several studies have shown that adherence to growth hormone therapy (GHT) is not optimal. There are several reasons why patients may not fully adhere to their treatment regimen and this may have implications on treatment success, patient outcomes and healthcare spending and resourcing. A change in healthcare practices, from a physician paternalistic to a more patient autonomous approach to healthcare, has encouraged a greater onus on a shared decision-making (SDM) process whereby patients are actively encouraged to participate in their own healthcare decisions. There is growing evidence to suggest that SDM may facilitate patient adherence to GHT. Improved adherence to therapy in this way may consequently positively impact treatment outcomes for patients. Whilst SDM is widely regarded as a healthcare imperative, there is little guidance on how it should be best implemented. Despite this, there are many opportunities for the implementation of SDM during the treatment journey of a patient with a GH-related disorder. Barriers to the successful practice of SDM within the clinic may include poor patient education surrounding their condition and treatment options, limited healthcare professional time, lack of support from clinics to use SDM, and healthcare resourcing restrictions. Here we discuss the opportunities for the implementation of SDM and the barriers that challenge its effective use within the clinic. We also review some of the potential solutions to overcome these challenges that may prove key to effective patient participation in treatment decisions. Encouraging a sense of empowerment for patients will ultimately enhance treatment adherence and improve clinical outcomes in GHT.

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          Most cited references77

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          The challenge of patient adherence

          Quality healthcare outcomes depend upon patients' adherence to recommended treatment regimens. Patient nonadherence can be a pervasive threat to health and wellbeing and carry an appreciable economic burden as well. In some disease conditions, more than 40% of patients sustain significant risks by misunderstanding, forgetting, or ignoring healthcare advice. While no single intervention strategy can improve the adherence of all patients, decades of research studies agree that successful attempts to improve patient adherence depend upon a set of key factors. These include realistic assessment of patients' knowledge and understanding of the regimen, clear and effective communication between health professionals and their patients, and the nurturance of trust in the therapeutic relationship. Patients must be given the opportunity to tell the story of their unique illness experiences. Knowing the patient as a person allows the health professional to understand elements that are crucial to the patient's adherence: beliefs, attitudes, subjective norms, cultural context, social supports, and emotional health challenges, particularly depression. Physician–patient partnerships are essential when choosing amongst various therapeutic options to maximize adherence. Mutual collaboration fosters greater patient satisfaction, reduces the risks of nonadherence, and improves patients' healthcare outcomes.
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            Consensus statement on the diagnosis and treatment of children with idiopathic short stature: a summary of the Growth Hormone Research Society, the Lawson Wilkins Pediatric Endocrine Society, and the European Society for Paediatric Endocrinology Workshop.

            Our objective was to summarize important advances in the management of children with idiopathic short stature (ISS). Participants were 32 invited leaders in the field. Evidence was obtained by extensive literature review and from clinical experience. Participants reviewed discussion summaries, voted, and reached a majority decision on each document section. ISS is defined auxologically by a height below -2 sd score (SDS) without findings of disease as evident by a complete evaluation by a pediatric endocrinologist including stimulated GH levels. Magnetic resonance imaging is not necessary in patients with ISS. ISS may be a risk factor for psychosocial problems, but true psychopathology is rare. In the United States and seven other countries, the regulatory authorities approved GH treatment (at doses up to 53 microg/kg.d) for children shorter than -2.25 SDS, whereas in other countries, lower cutoffs are proposed. Aromatase inhibition increases predicted adult height in males with ISS, but adult-height data are not available. Psychological counseling is worthwhile to consider instead of or as an adjunct to hormone treatment. The predicted height may be inaccurate and is not an absolute criterion for GH treatment decisions. The shorter the child, the more consideration should be given to GH. Successful first-year response to GH treatment includes an increase in height SDS of more than 0.3-0.5. The mean increase in adult height in children with ISS attributable to GH therapy (average duration of 4-7 yr) is 3.5-7.5 cm. Responses are highly variable. IGF-I levels may be helpful in assessing compliance and GH sensitivity; levels that are consistently elevated (>2.5 SDS) should prompt consideration of GH dose reduction. GH therapy for children with ISS has a similar safety profile to other GH indications.
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              Methods for measuring and monitoring medication regimen adherence in clinical trials and clinical practice.

              K C Farmer (1999)
              Researchers and clinicians have used numerous methods in their attempts to adequately assess patient compliance (adherence) with medication regimens and to identify noncompliant patients. Large variations have been reported in the extent of noncompliance in individual patients and large populations. In addition, nonadherence has often been poorly defined. Direct measures of adherence include drug assays of blood or urine, use of drug markers with the target medication, and direct observation of the patient receiving the medication. Indirect measures of adherence imply that the medication has been used by the patient; these measures include various forms of self-reporting by the patient, medication measurement (pill count), use of electronic monitoring devices, and review of prescription records and claims. Compliance measures should be assessed on the basis of their validity (sensitivity and specificity or statistical correlation) and the reference standard used. Many early studies used pill counts as a reference standard, but electronic monitoring devices such as the Medication Event Monitoring System have replaced pill counts as the reference standard. The choice of a method for measuring adherence to a medication regimen should be based on the usefulness and reliability of the method in light of the researcher's or clinician's goals. Specific methods may be more applicable to certain situations, depending on the type of adherence being assessed, the precision required, and the intended application of the results.
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                Author and article information

                Contributors
                Journal
                Front Endocrinol (Lausanne)
                Front Endocrinol (Lausanne)
                Front. Endocrinol.
                Frontiers in Endocrinology
                Frontiers Media S.A.
                1664-2392
                22 November 2018
                2018
                : 9
                : 688
                Affiliations
                [1] 1Department of Paediatrics, University of Cambridge , Cambridge, United Kingdom
                [2] 2Department of Paediatrics, University of the Witwatersrand , Johannesburg, South Africa
                [3] 3Department of Endocrinology, University Hospitals Birmingham NHS Foundation Trust , Birmingham, United Kingdom
                [4] 4Department of Paediatrics and Developmental Biology, Tokyo Medical and Dental University , Tokyo, Japan
                [5] 5Novo Nordisk Health Care AG , Zurich, Switzerland
                [6] 6Department of Paediatrics, IRCCS Istituto Giannina Gaslini, University of Genova , Genova, Italy
                Author notes

                Edited by: Indraneel (Indi) Banerjee, University of Manchester, United Kingdom

                Reviewed by: Ronald Cohen, University of Chicago, United States; Tim Cheetham, Newcastle University, United Kingdom

                *Correspondence: Carlo L. Acerini cla22@ 123456cam.ac.uk

                This article was submitted to Pediatric Endocrinology, a section of the journal Frontiers in Endocrinology

                Article
                10.3389/fendo.2018.00688
                6262035
                30524377
                dfc24638-c484-4896-a40e-699a1fbd3820
                Copyright © 2018 Acerini, Segal, Criseno, Takasawa, Nedjatian, Röhrich and Maghnie.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 30 July 2018
                : 02 November 2018
                Page count
                Figures: 4, Tables: 0, Equations: 0, References: 101, Pages: 14, Words: 11067
                Categories
                Endocrinology
                Review

                Endocrinology & Diabetes
                growth hormone therapy,delivery device,shared decision-making,patient autonomy,treatment adherences

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