1. Katherine R. Jones, RN, PhD, FAAN Shirley Moore, Elizabeth Madigan, Barbara Daly, Patricia Higgins CWRU, FPB School of Nursing This work supported by the National Institute for Nursing Research NIH P30NR010676 (S. Moore, PI)

2.  To produce a state of the science paper on the self-management research literature  Specific Aims: ◦ To identify, analyze, and summarize the systematic reviews published between 2005 -2011 that analyzed self-management interventions, programs and strategies ◦ To determine what is known about the effectiveness of self-management interventions, and what gaps exist in this research base related to target populations and outcomes ◦ To determine what limitations in this evidence base must be considered as future studies are planned and implemented

3.  Search multiple databases: MEDLINE/PubMed; Cochrane Database of Systematic Reviews (CDSR); CINAHL; Cochrane Database of Abstracts of Reviews of Effectiveness (DARE)  Key words linked to either self-management or self-monitoring: technology, chronic illness, symptom management, adherence, etc.  Exclusion criteria: non-English language; published before 2005; single interventions such as exercise, education alone  Abstraction: two reviewers, standardized form

5. Target Diagnosis/ConditionNumber of Systematic Reviews Diabetes33 Chronic conditions20 Osteoarthritis/MS pain 9 Asthma 9 Heart failure 8 Health promotion 7 COPD 6 Epilepsy 5 Oral anticoagulation 5 Obesity/overweight 4

6. Target Condition/DiagnosisNumber of Systematic Reviews Hypertension Smoking cessation 3 each Anxiety/depression Inflammatory bowel disease Multiple sclerosis 2 each Macular degeneration Cystic fibrosis Stroke Cancer Autism Addictions; Bipolar disease TB Diabetic kidney disease HIV 1 each

7.  Comprehensive S.M. educational programs ◦ 46 reviews ◦ Mostly diabetes, osteoarthritis, asthma  Technology-delivered interventions ◦ 42 reviews ◦ Telephone, telemedicine, interactive web-based, cell phone/STM  Self-monitoring interventions ◦ 21 reviews ◦ Blood glucose, oral anticoagulation, blood pressure  Action plan interventions ◦ 2 reviews ◦ Asthma, COPD

8. Outcome CategoryNumber of Systematic Reviews Clinical status/symptoms67 Health services utilization39 Physiologic measures31 Knowledge/learning19 Adverse events/complications13 Mortality11 Quality of life11 Adherence/compliance11 Self-efficacy 8 Feasibility/acceptability 7 Satisfaction 6 Cost 5 Other18

9.  Growing body of scientific evidence, but some conditions are under-studied and some outcomes are under-analyzed  Inclusion/exclusion criteria, designation of control groups varied widely across the primary studies and systematic reviews  Inconsistencies in reported findings were seen across some systematic reviews (tailoring, duration and intensity of effective interventions)

10.  Concerns with methodological quality - across years, topics, underlying studies, reviews themselves ◦ Small sample sizes, non-blinding of assessors, inadequate randomization, large drop-out rates, short follow-up periods ◦ Inadequate reporting of reviews: how validity of included studies was determined, how studies were included and excluded from review

11.  Intervention concerns: ◦ Inability to determine which program elements responsible for the observed effects and beneficial results ◦ Insufficient information provided about key elements of intervention; how best to format and deliver the intervention ◦ Content of interventions varied widely across studies; considerable heterogeneity  Multiple formats, different providers, varied number of sessions, different program durations, different target outcomes  Ill-defined self-management content

12.  Some self-management approaches strongly supported by results of included systematic reviews ◦ Group-based training for self-management effective for diabetics, metabolic control, osteoarthritis ◦ Better outcomes for diabetics with HbA1C levels 8 or more ◦ Better outcomes for asthmatics with moderate to severe symptoms

13.  Chronic conditions: Improved physiologic measures, clinical status, functioning, self- efficacy, screening behaviors  Heart failure: Improved utilization, adherence, learning, quality of life, mortality  Asthma: Improved utilization, symptoms, quality of life, self-efficacy, rescue medication use  Epilepsy: Improved seizure frequency, knowledge  Diabetes: Improved clinical status, physiologic measures, knowledge, medication requirements, quality of life

14.  Telephone: ◦ Counseling improved smoking cessation - dose effect ◦ Plus automated V.S. monitoring - reduced utilization in chronic disease  Telemedicine: ◦ DM -improved HbA1C, glycemic control, complications ◦ Respiratory disease – early identification of deterioration ◦ Heart failure – reduced mortality and hospital admissions  Web-based, interactive: ◦ DM – improved HbA1C ◦ Chronic conditions – improved adherence, knowledge, social support, self-efficacy, clinical and behavioral outcomes  Cell phone and text messaging: ◦ Diabetes, obesity, chronic conditions, asthma, HIV – improved HbA1C, symptoms, communication, satisfaction, knowledge, self-efficacy, medication adherence, stress, smoking quit rates, missed appointments, hospital admissions

15.  Blood pressure ◦ Modest net reductions, increased chance of meeting office targets ◦ Needs to be combined with regular medical review, vigorous drug therapy  Oral anticoagulation ◦ Large percentage of patients unable to learn ◦ Combined with self-adjustment, associated with fewer thrombo-embolic events and death, longer time in target INR range  Blood glucose ◦ Improved HbA1C levels ◦ More effective than urine testing ◦ Better glycemic control ◦ Only if baseline values above 8%  Weight ◦ Higher weight loss ◦ More frequent monitoring associated with better outcomes

16.  The research base supporting self-management interventions is large and growing  There are gaps in the research base in terms of target conditions, selected outcomes  There are limitations in the research base due to methodological issues with both the underlying research studies and the systematic reviews  Higher quality self-management studies with larger samples, longer follow-up, better described interventions, greater number of outcomes, and targeted sub-group analyses are needed  Better reporting of research studies and systematic reviews is needed