Fundamentals of Medical Non-Adherence (and delivering bad news) Gerald P. Koocher, Ph.D., ABPP Simmons College, Boston,

1. Fundamentals of Medical Non-Adherence(and delivering bad news)Gerald P. Koocher, Ph.D., ABPPSimmons College, Boston, MA

2. What psychological processes do clients encounter as the cope with a chronic health condition?

3. The client needs an opportunity to… • …to talk about and focus on the circumstances. • …to mourn the loss of the former self-image and way of being in the world. • …to acquire information, support, and learn about the illness and disease process. • …to make personal meaning of the experience.

4. Conceptualizing the Case • Getting a new medical diagnosis often means that one must adapt to a change in health circumstances (one’s own or a family member’s). • The news often will involve treatment that requires medical adherence to restore or maintain health.

5. Understanding the dimensions of Illness along a set of continua • Onset • Acute…gradual • Duration • Brief … intermittent … lifelong • Course • Remitting … relapsing • Predictability • Known and predictable … unknown or unpredictable • Prognosis • Normal life … terminal

6. Dimensions of an Illnessalong a set of continua • Burdens of Care • None … extensive • Medications, monitoring, appliances, personal assistance… • Transmission • Genetic…traumatic…contagious • Obviousness • Blatant…invisible • Social Tolerance • Stigmatizing…acceptable

7. Children’sPerspectives • Who is Anna Sthesia? • Cystic Fibrosis or… • Sixty-five roses • Sick-sick fibrosis • Sickle cell anemia or… • Sick-as-hell anemia • Diabetes or… • Die-a-betes

8. Adherence or Compliance?

9. Adherence vs. Non-Compliance • Adherence to (or compliance with) a medication regimen generally addresses: • The extent to which patients take medications as prescribed or otherwise follow health care providers’ recommendations. • I prefer the word "adherence", because "compliance" suggests passively following orders, rather than a therapeutic alliance or contract.

10. Adherence vs. Non-Compliance • Reports of adherence rates for individual patients generally cite percentages of prescribed doses of medication taken over a specified interval. • Some studies further refine the definition by focusing on dose taking (i.e., prescribed # of pills each day) and timing (taking meds within a prescribed period).

11. Adherence vs. Non-Compliance • Adherence rates typically run highest among patients with acute conditions. • Persistence among patients with chronic conditions often declines dramatically after the first six months of therapy.

12. Adherence vs. Non-Compliance • Average rates of adherence reported in clinical trials can run misleadingly high due to attention focused on participants and selection biases. • Even so, average adherence rates in clinical trials run only 43 to 78 % among patients receiving treatment for chronic conditions. • No consensual standard exists for what constitutes adequate adherence. • Some trials consider rates greater than 80% acceptable, while others consider rates of greater than 95 % mandatory for adequate adherence (e.g., treatment of HIV infection).

13. Adherence vs. Non-Compliance • Physicians have little ability to recognize non-adherence, and interventions to improve rates have had mixed results. • Poor medical adherence accounts for substantial worsening of disease, death, and increased health care costs. • Of all medication-related hospital admissions in the U.S., 33 to 69 % follow poor medication adherence, at a cost of approximately $100 billion annually.

14. Measurement Challenges • Direct methods • observed therapy • measurement of concentrations of a drug, its metabolite, or a chemical marker • Indirect methods of measurement of adherence include • asking the patient about ease in taking prescribed medication, • assessing clinical response, • performing pill counts • ascertaining rates of refilling prescriptions • collecting patient questionnaires • using electronic medication monitors • measuring physiologic markers • asking the patient to keep a medication diary • asking the help of a caregiver, school nurse, or teacher.

15. Conceptual Foundation • Consider consequences of the specific threats to patient’s or family members’ psychological adjustment. • How will life activities and goals be disrupted. • The more complex and disruptive the regimen, the greater the likelihood of adherence problems.

16. Three Typologies of Medical Non-Adherence Koocher, G.P., McGrath, M.L., & Gudas, L. J. (1990). Typologies of non-adherence in cystic fibrosis. Journal of Developmental and Behavioral Pediatrics, 11, 353-358.

17. Medical Non-Adherence • Identifying the basis for deviating from the prescribed course of treatment is the first step.

18. Type 1: Inadequate Knowledge • Is information available to patient and family? • Is the form of information comprehensible?

19. Type 1: Inadequate Knowledge • Is the information appropriate to age and culture? • Are the rationales for components of treatment clear?

20. Type 2: Psychosocial Resistance • Consider the practitioners’ behavior. • “Referent power” issues “Hi, my name is Kevin. I’ll be your doctor for today.”

21. Type 2: Psychosocial Resistance • Explore social or cultural pressures. • Assess environmental factors • Address complexity of regimen

22. Type 2: Psychosocial Resistance • Assess for psychological factors • Attributions • Motivations • Defense mechanisms • Psychopathology “This is gonna hurt like hell.”

23. Type 3: Educated Non-Adherence “Before each of you, you will find a bitter pill and a glass of water”

24. Inquiring about Non-adherence Czajkowski, D. R. & Koocher, G.P. (1986). Predicting Medical Compliance among Adolescents with Cystic Fibrosis. Health Psychology, 5, 297‑305. Reprinted in: Melamed, B.G., Matthews, K. A., Routh, D. K., Stabler, B., & Schneiderman, N. (Eds.) (1988). Child Health Psychology. Hillsdale, NJ: Lawrence Erlbaum and Associates, pp. 335-343. (35% non-adherent in CF sample) N = 40 ages 13-23. “Well, how long do you want to live?”

25. Inquiring about Non-adherence • What has your doctor asked you to do in order to best manage your illness (or to stay healthy)? • What are the hardest pieces of medical advice to follow? • Which parts to you skip or miss most often? • What gets in the way of following the recommendations?

26. Review article & Classic Text • Osterberg, L. & Blaschke, T. (2005). Drug Therapy: Adherence to Medication. New England Journal of Medicine, 353, 487-497. • Rapoff, M. A. (2009). Adherence I Pediatric Medical Regimens (2nd Ed). New York: Springer.

27. Table 2Major Predictors of Poor Adherence to Medication,According to Studies of Predictors From:   Osterberg: NEJM, 353 (5).August 4, 2005.487-497

30. Improving Adherence • Methods available to improve adherence can be grouped into four general categories: • patient education • improved dosing schedules • increased hours when the clinic is open (including evening hours), and therefore shorter wait times; and • improved communication between physicians and patients.

31. Improving Adherence • Most methods of improving adherence involve combinations of behavioral interventions and reinforcements in addition to increasing the convenience of care, providing educational information about the medical condition and the treatment, and other forms of supervision, monitoring, or attention.

32. Delivering Bad News

33. Hart, C., Harrison, A., & Hart, C. (2006). Breaking Bad News. In Mental health care for nurses: Applying mental health skills in the general hospital. (pp. 82-94): Blackwell Publishing: Malden. • Most important: how do we know that the news we are about to impart will be perceived by the patient as 'bad'? • A patient may receive definite news--whether or not it is perceived by clinicians as 'bad'--as conferring a degree of certainty and feel grateful for this, particularly if it confirms a long held suspicion or belief. • Equally important: information that the bearer may have thought of as relatively unimportant may have a severe impact on the patient and/or family members.

34. Hart, C., Harrison, A., & Hart, C. (2006). Breaking Bad News. In Mental health care for nurses: Applying mental health skills in the general hospital. (pp. 82-94): Blackwell Publishing: Malden. • Who should tell the patient the particular news. • Someone who knows him/her. • The person who has all the information available, to cover any question the patient and/or relatives may wish to ask. • The primary care physician, as the person with overall responsibility for the patient's treatment, or a 'specialist' in such matters as breaking bad news? • Communicating bad news is most closely associated with having to tell patients about a terminal prognosis. As such, much of the literature comes from the areas of critical care and palliative care.

35. Avoid Aloofness • Try not to protect yourself with distancing. • Just because you have bad news should not prevent you from offering support “You have a serious illness of an undisclosed nature.”

36. Use Empathy • Try to understand and respect the perspective of the recipient. “Well, I guess I’ll have the ham and eggs.”

37. The physician’s Perspective “It was touch and go for a while, young man, but I think we were able to save your leg.”

38. Be Direct • Deliver the bottom line first, then explain. “You’re doing it wrong.”

39. Good News, Bad News • The "good news/bad news approach does not help if the news is only really bad. “Which do you prefer; sharing a room with a person who’s slightly out of his mind from heavy medication, or a room with a person who’s throwing up all the time?”

40. Follow Through • Have a plan or help the recipient to engage in developing one. • When stress is high written information can help. • Set up ongoing support and availability.

41. Show Concern and Encouragement • Be human, and be present.