Self-Management in Multiple Myeloma:

1. Self-Management in Multiple Myeloma: Research Presentation and Paper Beth Faiman NURS 615

2. Overview • Multiple Myeloma (MM) – Rare bone marrow cancer • At diagnosis, back pain, anemia, kidney problems • Newer drugs have transitioned MM to chronic illness • With improve survival comes peripheral neuropathy (PN), pain, muscle cramping that does not resolve which impacts QOL • May lead to decreased cancer treatment adherence

3. Treatment for MM • Oral and intravenous • Other medications are prescribed to prevent side effects • Are patients correctly taking their medications? • Can they recognize side effects that need to be reported? • Follow up laboratory and office visits? • Comorbidities (depression, heart disease, age)? • Other illnesses may impact treatment regimen

4. Adherence and Self Management • Adherence • extent to which a patient’s behavior corresponds with the recommendations of his or her healthcare professional (Kelly & Agius, 2006). • Self-management (SM) of chronic illness • daily activities that individuals undertake to keep the illness under control, minimize impact on physical health status and functioning, cope with the psychosocial sequeleae of the illness (Gallant, 2003) • Cancer is a chronic illness • patient-oriented care, with patients and their families integrated as members of the care team (Hibbard, Mahoney, Stock, & Tusler, 2007).

5. SM and my research • Focus on PN symptoms, which is the most common reason for discontinuing treatment • Major affect on QOL • Prescription pharmacologic and narcotic agents have been used to relieve PN symptoms but are not always effective, and can lead to increased costs to the patient, undesirable side effects, and non-adherence to treatment. • Oral glutamine, an easily obtained over-the-counter (OTC) amino acid supplement, will be used

6. Study Significance • Patient success: • (1) why they are taking the anti-cancer medication • (2) what are the side effects of treatment • (3) how are they expected to follow their treatment plan • (4) when to report problems and complications, what to do • Knowledge to recognize side-effects and to know how, when, and who to make appropriate contact with from their medical team is important, but education alone is insufficient to improve SM. • This study will include additional techniques to enhance adherence through SM.

7. Factors to improve SM • The rationale for measures of SM and adherence are based on prior research. • One study suggested activation is related to positive change in a variety of SM behaviors in patients with chronic diseases, and adherence can be increased through this (Hibbard et al., 2007). • Activation in my study will be encouraged through didactic discussion with the patient in regard to missed doses, and what may help each patient from missing doses of medication in the future

8. Factors to improve SM • Three E’s in chronic illness: • Economic, educational and emotional factors. • SM in patients with chronic illnesses : • Three self-management tasks (medical management, role management, and emotional management) • Six self-management skills (problem solving, decision making, resource utilization, the formation of a patient-provider partnership, action planning, and self-tailoring) (Lorig & Holman, 2003)

9. How SM influences Research Questions • Patients with MM and PN symptoms are faced with remembering to take their medications as prescribed, report side effects and also manage their day-to-day activities. • Does glutamine decrease the severity and worsening of PN symptoms (numbness, MC and pain) in patients being treated with bortezomib, lenalidomide or thalidomide as compared to patients receiving placebo at 1 month, 3 months and 6 months? • Does glutamine improve cancer treatment compliance (patient ability to remain on anti-cancer treatment) in patients receiving bortezomib, lenalidomide or thalidomide as compared to patients receiving placebo at 1 month, 3 months and 6 months? • Does the use of diary cards with reflective statements result in better adherence to medication therapy as compared to patients that do not use reflective statements at 1 month, 3 months and 6 months?

10. family Peers, Support group Nurses Internet Willingness to participate Reflective statements

11. Methods • Experimental, randomized, double-blind, prospective study, 100 MM patients with PN symptoms at age of 21 and older receiving bortezomib, lenalidomide or thalidomide will be recruited. • Randomized in a 1:1 ratio to receive oral glutamine or placebo with escalation mode. • Diary cards to record their date and time the anti-myeloma medication was taken to assess for compliance to the anti-myeloma treatment regimen. • Further randomized in a 1:1 ratio to the diary card intervention. Patients will be given diary cards to record the date and time the study medication was taken. • Patients will be asked to document if the study medication was missed and provide reflective statements as to why this occurred, which will be discussed with the study nurse at each scheduled visit at 1 month, 3 months and 6 months. At 6 months the study will be completed

12. Specific questions for Adherence • We will ask patients to report if the medication was not taken and for what reason. • Specific reflective questions will focus on the emotional reasons for non-adherence and include: • (1) Did you forget to take your study medication and if so, what were the dates? • (2) Did you experience side effects that made you not want to take your medication? • (3) What other concerns did you have that prevented you from taking the medication? • (4) What helps you remember to take your medication? • (5) Is there anything you can do so missing your medication does not happen again? Nurses will discuss with the patient responses to reflective statements at each scheduled visit

13. Strengths and Limitations • This study is innovative in that it is the first to study the effects of OTC glutamine in this population. • First to use an escalating dose of glutamine to assure a better opportunity to detect an effect of glutamine on PN symptoms. • More importantly, few studies in cancer research have integrated SM into the study design to see if strategies such as the use of diary cards, reflective statements and discussing their responses to those statements will increase adherence as compared to patients that do not use reflective statements. • Information provision to patients alone is not effective but is an essential component to effective self-management of oral treatment in patients with MM. How this information is provided, and in what form, will not be the focus of this study which is a limitation. • Also, the number of subjects may be too low to compare groups and detect an effect. However, in this exploratory study answers to patient responses may provide information for future research.

14. Thank you!