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Learning to Listen: Delivering Patient-Centered Care for Adolescents

      See Related Article p. 484
      Over recent years, there has been a progressive shift in the way that health care quality is defined and measured. Patient-centered care—defined as “providing care that is respectful of, and responsive to, individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” [
      Committee on Quality of Health Care in America
      Crossing the quality chasm: A new health system for the 21st century.
      ]— is associated with improved clinical outcomes, efficiency, and patient satisfaction [
      • Stewart M.
      • Brown J.B.
      • Donner A.
      • et al.
      The impact of patient-centered care on outcomes.
      ,
      • Rathert C.
      • Wyrwich M.D.
      • Boren S.A.
      Patient-centered care and outcomes a systematic review of the literature.
      ] and has become a policy priority in the United States and other countries [
      • Selby J.V.
      • Lipstein S.H.
      PCORI at 3 years—Progress, lessons, and plans.
      ]. The expanding field of patient-centered outcomes research has strengthened the voice of patients, resulting in numerous tools and indicators to measure health care quality from the patient's perspective [
      • Selby J.V.
      • Lipstein S.H.
      PCORI at 3 years—Progress, lessons, and plans.
      ].
      Patient-centered care may be particularly important during adolescence—a formative period when lifelong behaviors and attitudes to health are acquired. However, the principles of patient-centered care need to be interpreted and applied in a way that meets the distinct developmental needs of this age group [
      • Sawyer S.M.
      • Ambresin A.-E.
      • Bennett K.E.
      • Patton G.C.
      A measurement framework for quality health care for adolescents in hospital.
      ]. As a starting point, adolescents want their voice to be heard. A recent study across eight European countries found that being listened to was rated the most important health care priority by children (up to 12 years), early adolescents (13–15 years), and older adolescents (16–18 years)—ahead of not being in pain, not feeling scared, the presence of parents/family, and five other aspects of patient experience [

      Bensted R, Hargreaves DS, Lombard J, et al. Comparison of healthcare priorities in childhood and early/late adolescence: Analysis of cross-sectional data from eight countries in the Council of Europe Child-Friendly Healthcare Survey, 2011 [published online ahead of print June 25, 2014]. Child Care Health Dev. http://dx.doi.org/10.1111/cch.12169.

      ]. From a legal perspective, the rights of adolescents to be listened to and participate in decisions about their care are enshrined in the United Nations Convention on the Rights of the Child (ratified by all UN member states except for the United States and Somalia) [

      UNICEF. Convention on the Rights of the Child [Internet]. Available at: http://www.unicef.org/crc/. Accessed August 1, 2014.

      ].
      Currently, many health professionals deliver genuinely patient-centered services that listen to, respect, engage, and empower their adolescent patients. However, efforts to ensure that all adolescents experience this level of care have been limited by the lack of a common conceptual framework for defining and measuring patient-centered adolescent care. Despite publication of numerous guidelines and quality standards, few validated quantitative indicators are available to measure and compare the quality of different services. This gap has also acted as a barrier to providing financial incentives for higher quality care.
      Publication of a measurement framework for quality health care for adolescents in hospital, by Sawyer et al. in this issue of the Journal [
      • Sawyer S.M.
      • Ambresin A.-E.
      • Bennett K.E.
      • Patton G.C.
      A measurement framework for quality health care for adolescents in hospital.
      ], is an important step toward meeting this need. It contains a set of quantitative indicators of patient- and family-centered care for adolescents in hospital, which can be used to compare services and monitor progress over time. The conceptual framework in this article explicitly promotes adolescent friendly care as a common route toward better health outcomes, complementing the moral and legal arguments in favor of its adoption. In turn, adolescent friendly care is grounded in patient- and family-centered care, alongside the related constructs of evidence-informed care and positive care experience.
      This framework gives a prominent voice to adolescents themselves: first, in the indicators used to assess patient experience and care processes and second, in the methods used to develop the framework. Rightly, this is positioned within a model of family-centered care. Whenever appropriate, parents, guardians, and other family members should be involved in the care of adolescents in hospital [

      Council of Europe Committe of Ministers. Guidelines on child-friendly health care [Internet]. Council of Europe; 2011. Available at: https://wcd.coe.int/ViewDoc.jsp?id=1836421&Site=COE. Accessed August 1, 2014.

      ], and their presence is particularly valued by younger adolescents [

      Bensted R, Hargreaves DS, Lombard J, et al. Comparison of healthcare priorities in childhood and early/late adolescence: Analysis of cross-sectional data from eight countries in the Council of Europe Child-Friendly Healthcare Survey, 2011 [published online ahead of print June 25, 2014]. Child Care Health Dev. http://dx.doi.org/10.1111/cch.12169.

      ]. It is also important to emphasize that listening to adolescents does not absolve parents and professionals of the responsibility to make decisions that are in the long-term best interest of those too young to be fully legally competent [

      UNICEF. Convention on the Rights of the Child [Internet]. Available at: http://www.unicef.org/crc/. Accessed August 1, 2014.

      ]. However, none of these issues should be seen as barriers to engaging and listening to adolescent patients [

      UNICEF. Convention on the Rights of the Child [Internet]. Available at: http://www.unicef.org/crc/. Accessed August 1, 2014.

      ]. As illustrated in the model by Sawyer et al, the quality of many aspects of adolescent care cannot be assessed without asking their views, and this process is critical to greater health care engagement and improved health outcomes.
      Initiatives to promote the voice of young people have growing international momentum: examples include the recent Guidelines on Child Friendly Healthcare, endorsed by 47 members of the Council of Europe [

      Council of Europe Committe of Ministers. Guidelines on child-friendly health care [Internet]. Council of Europe; 2011. Available at: https://wcd.coe.int/ViewDoc.jsp?id=1836421&Site=COE. Accessed August 1, 2014.

      ]; the You're Welcome quality standards for adolescent services in England [
      • Department of Health
      You're Welcome: Quality criteria for young people friendly services.
      ]; and ongoing global and regional work by the World Health Organization [
      WHO
      Department of Maternal, Newborn, Child and Adolescent Health. Making health services adolescent friendly: Developing national quality standards for adolescent friendly health services.
      ]. Sadly, however, the quality of care experienced by many adolescents across the world continues to fall far short of these standards. Their voice is often excluded from patient surveys, while older adolescents and young adults report the poorest patient experience of any age group [
      • Hargreaves D.S.
      • Viner R.M.
      Children's and young people's experience of the National Health Service in England: A review of national surveys 2001-2011.
      ].
      Learning to listen to adolescents forms the basis of working in partnership with them to ensure that health care services meet their distinct needs. This process has the potential to transform the quality of care they receive, their attitudes to health and health care, and eventually the poor health outcomes that many experience [
      • Park M.J.
      • Scott J.T.
      • Adams S.H.
      • et al.
      Adolescent and young adult health in the United States in the past decade: Little improvement and young adults remain worse off than adolescents.
      ,
      UNICEF
      UNICEF state of the World's children 2011-Adolescence: An age of opportunity.
      ]. Availability of quantitative data to inform this process is critical to the goal of delivering the patient-centered care that adolescents deserve.

      Funding Sources

      D.S.H. is supported by The Commonwealth Fund.

      References

        • Committee on Quality of Health Care in America
        Crossing the quality chasm: A new health system for the 21st century.
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        • Brown J.B.
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        • et al.
        The impact of patient-centered care on outcomes.
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        Patient-centered care and outcomes a systematic review of the literature.
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        PCORI at 3 years—Progress, lessons, and plans.
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        A measurement framework for quality health care for adolescents in hospital.
        J Adolesc Health. 2014; 55: 484-490
      1. Bensted R, Hargreaves DS, Lombard J, et al. Comparison of healthcare priorities in childhood and early/late adolescence: Analysis of cross-sectional data from eight countries in the Council of Europe Child-Friendly Healthcare Survey, 2011 [published online ahead of print June 25, 2014]. Child Care Health Dev. http://dx.doi.org/10.1111/cch.12169.

      2. UNICEF. Convention on the Rights of the Child [Internet]. Available at: http://www.unicef.org/crc/. Accessed August 1, 2014.

      3. Council of Europe Committe of Ministers. Guidelines on child-friendly health care [Internet]. Council of Europe; 2011. Available at: https://wcd.coe.int/ViewDoc.jsp?id=1836421&Site=COE. Accessed August 1, 2014.

        • Department of Health
        You're Welcome: Quality criteria for young people friendly services.
        ([Internet])2011 (Available at:) (Accessed August 1, 2014)
        • WHO
        Department of Maternal, Newborn, Child and Adolescent Health. Making health services adolescent friendly: Developing national quality standards for adolescent friendly health services.
        ([Internet])2012 (Available at:) (Accessed August 1, 2014)
        • Hargreaves D.S.
        • Viner R.M.
        Children's and young people's experience of the National Health Service in England: A review of national surveys 2001-2011.
        Arch Dis Child. 2012; 97: 661-666
        • Park M.J.
        • Scott J.T.
        • Adams S.H.
        • et al.
        Adolescent and young adult health in the United States in the past decade: Little improvement and young adults remain worse off than adolescents.
        J Adolesc Health. 2014; 55: 3-16
        • UNICEF
        UNICEF state of the World's children 2011-Adolescence: An age of opportunity.
        2011

      Linked Article

      • A Measurement Framework for Quality Health Care for Adolescents in Hospital
        Journal of Adolescent HealthVol. 55Issue 4
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          Despite growing interest in measurement of health care quality and patient experience, the current evidence base largely derives from adult health settings, at least in part because of the absence of appropriately developed measurement tools for adolescents. To rectify this, we set out to develop a conceptual framework and a set of indicators to measure the quality of health care delivered to adolescents in hospital.
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