WG 2 Needs of Patients and Caregivers Late Adolescence to Adulthood

Original Document


Mental Health and Diabetes Work Group 2

Co-chairs: Marian Rewers, Ken Gorfinkle

Participants: Lori Laffel, Lee Peebles, Howard Wolpert, M. Rubenstein, Tony Rogowski, Alyson Harder, Daniel Davidow, Karen Johnson, Martin Schappell, Aaron Kowalski

Our work group was tasked with addressing the needs of patients and caregivers in the care of diabetes, with a special focus on the period from late adolescence to  adulthood.  The work group was comprised of three distinct constituencies: Representing the private sector were medical professionals and hospital administrators whose focus is to run a large scale health system which provides quality care in a competitive health care market. Representing the patient/consumer point of view were active members of the JDRF and other community leaders whose lives are directly affected by diabetes and its care. The third group was comprised of medical and mental health professionals working within academic medical centers.


A number of central themes emerged:


Participants representing both the private sector and patient advocates clearly articulated a necessity to revamp the way mental health services are reimbursed by insurance companies.  Borrowing from commercial business models, the group strongly emphasized the need for identifying tangible outcomes by which to measure and evaluate treatment effectiveness.  Outcomes included patient satisfaction, protection of patient earnings, health maintenance and quality of life.


Mediating steps were identified towards these outcomes:

  1. Recognition of age-specific goals in the context of chronic disease and patients’ potential to ‘bounce forward’
  2. Preventive mental health visits at a prescribed frequency after diagnosis
  3. Mental health intervention at key life-transition points, such as puberty, entry to college, marriage, pregnancy, and relocation.
  4. Advocacy is needed to protect against academic and employment discrimination.
  5. Involvement of the immediate family members of patients
  6. Education of primary and diabetes care providers
  7. Need for more outcomes research


Endocrinologists, nurses and mental health professionals were supportive of the above formulation, and then turned the focus on a need for diabetes treatment guidelines to better reflect the need for well-integrated behavioral health during all phases of care.  Specifically, the group described the enormous cost and health-saving potential of primary preventive behavioral intervention.  Research needs to further quantify the cost/benefit of preventing avoidable DKA admissions and long- term complications.  The group noted a gap in available mental health services for adults with diabetes in comparison to youth.  Also noted was a significant gap in “diabetes literacy” among mental health professionals in the community at large.


Medical professionals working in diabetes centers showed a strong consensus that mental health support for patients is best delivered on site, where the physicians, nurses and nutritionists have easy access to behavioral consultation.  Close collaboration between diabetes specialists and behavioral scientists will serve to boost effectiveness of both.


Behavioral and mental health professionals working within diabetes care centers can identify a taxonomy for Diabetes Distress, and can begin to set out treatment guidelines for supporting patients as they find their health and wellbeing put at risk.


■     New onset trauma

■     Honeymoon transition distress

■     Parent/child or family conflict

■     Fear of lows

■     Fear of high blood sugar and of complications

■     Separation anxiety in children

■     Defensive hyperglycemia in older patients

■     Diabetes-related disordered eating

■     Diabetes burn-out

■     Transition to emerging adulthood

■     Sexuality and intimacy

■     Pregnancy planning and management

■     School/employment/social stress around DM

■     Financial/insurance coverage challenges

■     Cultural barriers to accessing care


This taxonomy can be used to identify gaps in patient care, to develop structured interventions to minimize harm to patients, to create training standards for mental health workers in diabetes care, and finally to develop an action plan:


■     Develop a model for integrated care

■     Train mental health professionals in DM care

■     Conduct cost-effectiveness research on prevention

■     Lobby congress for ACA support

■     Raise public awareness.



Marian Rewers, MD, PhD                                         Kenneth Gorfinkle, Ph.D

Professor of Pediatrics and Medicine                     Assistant Clinical Professor

Clinical Director                                                           of Psychology in Psychiatry

Barbara Davis Center for Diabetes                         New York Presbyterian Hospital

University of Colorado School of Medicine             The Naomi Berrie Diabetes Center

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