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Patient, Caregiver, and Physician Work in Heart Failure Disease Management

A Qualitative Study of Issues That Undermine Wellness



      To identify factors underlying heart failure hospitalization.


      Between January 1, 2012, and May 31, 2012, we combined medical record reviews and cross-sectional qualitative interviews of multiple patients with heart failure, their clinicians, and their caregivers from a large academic medical center in the Midwestern United States. The interview data were analyzed using a 3-step grounded theory–informed process and constant comparative methods. Qualitative data were compared and contrasted with results from the medical record review.


      Patient nonadherence to the care plan was the most important contributor to hospital admission; however, reasons for nonadherence were complex and multifactorial. The data highlight the importance of patient education for the purposes of condition management, timeliness of care, and effective communication between providers and patients.


      To improve the consistency and quality of care for patients with heart failure, more effective relationships among patients, providers, and caregivers are needed. Providers must be pragmatic when educating patients and their caregivers about heart failure, its treatment, and its prognosis.

      Abbreviations and Acronyms:

      CKD (chronic kidney disease), DNR (do not resuscitate), ED (emergency department), ESRD (end-stage renal disease), HD (hospital discharge), HF (heart failure), NMH (Northwestern Memorial Hospital), SA (substance abuse)
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        • Corrigan J.M.
        Crossing the Quality Chasm: Building a Better Delivery System.
        National Academies Press, Washington, DC2005
        • Go A.S.
        • Mozaffarian D.
        • Roger V.L.
        • et al.
        Heart disease and stroke statistics—2013 update: a report from the American Heart Association.
        Circulation. 2013; 127: e6-e245
        • Krumholz H.M.
        • Merrill A.R.
        • Schone E.M.
        • et al.
        Patterns of hospital performance in acute myocardial infarction and heart failure 30-day mortality and readmission.
        Circ Cardiovasc Qual Outcomes. 2009; 2: 407-413
        • Joynt K.E.
        • Jha A.K.
        Who has higher readmission rates for heart failure, and why? implications for efforts to improve care using financial incentives.
        Circ Cardiovasc Qual Outcomes. 2011; 4: 53-59
        • Nagasako E.M.
        • Reidhead M.
        • Waterman B.
        • Claiborne Dunagan W.
        Adding socioeconomic data to hospital readmissions calculations may produce more useful results.
        Health Aff (Millwood). 2014; 33: 786-791
        • Greysen S.R.
        • Hoi-Cheung D.
        • Garcia V.
        • et al.
        “Missing pieces”: functional, social, and environmental brriers to recovery for vulnerable older adults transitioning from hospital to home.
        J Am Geriatr Soc. 2014; 62: 1556-1561
        • Calvillo-King L.
        • Arnold D.
        • Eubank K.J.
        • Lo M.
        • Yunyongying P.
        • Halm E.A.
        Impact of social factors on risk of readmission or mortality in pneumonia and heart failure: systematic review.
        J Gen Intern Med. 2013; 28: 269-282
        • Cubbon R.M.
        • Woolston A.
        • Adams B.
        • et al.
        Prospective development and validation of a model to predict heart failure hospitalisation.
        Heart. 2014; 100: 923-929
        • Bikdeli B.
        • Wayda B.
        • Bao H.
        • et al.
        Place of residence and outcomes of patients with heart failure: analysis from the Telemonitoring to Improve Heart Failure Outcomes Trial.
        Circ Cardiovasc Qual Outcomes. 2014; 7: 749-756
        • Roe-Prior P.
        Sociodemographic variables predicting poor post-discharge outcomes for hospitalized elders with heart failure.
        Medsurg Nurs. 2007; 16: 317-321
        • Ross J.S.
        • Mulvey G.K.
        • Stauffer B.
        • et al.
        Statistical models and patient predictors of readmission for heart failure: a systematic review.
        Arch Intern Med. 2008; 168: 1371-1386
        • Charmaz K.
        Constructing Grounded Theory: A Practical Guide Through Qualitative Analysis.
        SAGE Publications, Thousand Oaks, CA2006
        • Charmaz K.
        • Belgrave L.
        Qualitative interviewing and grounded theory analysis.
        in: Gubrium J.F. Holstetin J.A. Marvasti A.B. McKinney K.D. The SAGE Handbook of Interview Research: The Complexity of the Craft. 2nd ed. SAGE Publications, Thousand Oaks, CA2012: 347-364
        • Magasi S.
        • Ryan G.
        • Revicki D.
        • et al.
        Content validity of patient-reported outcome measures: perspectives from a PROMIS meeting.
        Qual Life Res. 2012; 21: 739-746
        • Allen L.A.
        • Yager J.E.
        • Funk M.J.
        • et al.
        Discordance between patient-predicted and model-predicted life expectancy among ambulatory patients with heart failure.
        JAMA. 2008; 299: 2533-2542
        • Guest G.
        • Bunce A.
        • Johnson L.
        How many interviews are enough? an experiment with data saturation and variability.
        Field Methods. 2006; 18: 59-82
        • Morse J.M.
        The significance of saturation.
        Qual Health Res. 1995; 5: 147-149
        • Morse J.M.
        Determining sample size.
        Qual Health Res. 2000; 10: 3-5
        • Butler J.
        • Fonarow G.C.
        • Gheorghiade M.
        Need for increased awareness and evidence-based therapies for patients hospitalized for heart failure.
        JAMA. 2013; 310: 2035-2036
        • Moraska A.R.
        • Chamberlain A.M.
        • Shah N.D.
        • et al.
        Depression, healthcare utilization, and death in heart failure: a community study.
        Circ Heart Fail. 2013; 6: 387-394
        • Sherwood A.
        • Blumenthal J.A.
        • Trivedi R.
        • et al.
        Relationship of depression to death or hospitalization in patients with heart failure.
        Arch Intern Med. 2007; 167: 367-373
        • Strunin L.
        • Stone M.
        • Jack B.
        Understanding rehospitalization risk: can hospital discharge be modified to reduce recurrent hospitalization?.
        J Hosp Med. 2007; 2: 297-304
        • Ambrosy A.P.
        • Fonarow G.C.
        • Butler J.
        • et al.
        The global health and economic burden of hospitalizations for heart failure: lessons learned from hospitalized heart failure registries.
        J Am Coll Cardiol. 2014; 63: 1123-1133
        • Joynt K.E.
        • Jha A.K.
        A path forward on Medicare readmissions.
        N Engl J Med. 2013; 368: 1175-1177
        • Dharmarajan K.
        • Hsieh A.F.
        • Lin Z.
        • et al.
        Diagnoses and timing of 30-day readmissions after hospitalization for heart failure, acute myocardial infarction, or pneumonia.
        JAMA. 2013; 309: 355-363
        • Gillick M.R.
        The critical role of caregivers in achieving patient-centered care.
        JAMA. 2013; 310: 575-576
        • Monane M.
        • Bohn R.L.
        • Gurwitz J.H.
        • Glynn R.J.
        • Avorn J.
        Noncompliance with congestive heart failure therapy in the elderly.
        Arch Intern Med. 1994; 154: 433-437
        • Albert N.M.
        Improving medication adherence in chronic cardiovascular disease.
        Crit Care Nurse. 2008; 28 (quiz 65): 54-64
        • Annema C.
        • Luttik M.L.
        • Jaarsma T.
        Reasons for readmission in heart failure: perspectives of patients, caregivers, cardiologists, and heart failure nurses.
        Heart Lung. 2009; 38: 427-434
        • Wu J.R.
        • Moser D.K.
        • Lennie T.A.
        • Burkhart P.V.
        Medication adherence in patients who have heart failure: a review of the literature.
        Nurs Clin North Am. 2008; 43 (vii-viii): 133-153
        • Rosenbaum L.
        • Shrank W.H.
        Taking our medicine: improving adherence in the accountability era.
        N Engl J Med. 2013; 369: 694-695
        • Viswanathan M.
        • Golin C.E.
        • Jones C.D.
        • et al.
        Interventions to improve adherence to self-administered medications for chronic diseases in the United States: a systematic review.
        Ann Intern Med. 2012; 157: 785-795
        • Andrikopoulou E.
        • Abbate K.
        • Whellan D.J.
        Conceptual model for heart failure disease management.
        Can J Cardiol. 2014; 30: 304-311
        • Retrum J.H.
        • Boggs J.
        • Hersh A.
        • et al.
        Patient-identified factors related to heart failure readmissions.
        Circ Cardiovasc Qual Outcomes. 2013; 6: 171-177
        • Skotzko C.E.
        Symptom perception in CHF: (why mind matters).
        Heart Fail Rev. 2009; 14: 29-34
        • Katon W.
        • Lin E.H.
        • Kroenke K.
        The association of depression and anxiety with medical symptom burden in patients with chronic medical illness.
        Gen Hosp Psychiatry. 2007; 29: 147-155
        • Sayers S.L.
        • Hanrahan N.
        • Kutney A.
        • Clarke S.P.
        • Reis B.F.
        • Riegel B.
        Psychiatric comorbidity and greater hospitalization risk, longer length of stay, and higher hospitalization costs in older adults with heart failure.
        J Am Geriatr Soc. 2007; 55: 1585-1591
        • Skotzko C.E.
        • Vrinceanu A.
        • Krueger L.
        • Freudenberger R.
        Alcohol use and congestive heart failure: incidence, importance, and approaches to improved history taking.
        Heart Fail Rev. 2009; 14: 51-55
        • Vashi A.A.
        • Fox J.P.
        • Carr B.G.
        • et al.
        Use of hospital-based acute care among patients recently discharged from the hospital.
        JAMA. 2013; 309: 364-371
        • Schenker Y.
        • Fernandez A.
        • Sudore R.
        • Schillinger D.
        Interventions to improve patient comprehension in informed consent for medical and surgical procedures: a systematic review.
        Med Decis Making. 2011; 31: 151-173
        • Granger B.B.
        • Sandelowski M.
        • Tahshjain H.
        • Swedberg K.
        • Ekman I.
        A qualitative descriptive study of the work of adherence to a chronic heart failure regimen: patient and physician perspectives.
        J Cardiovasc Nurs. 2009; 24: 308-315
        • Thomas E.J.
        Improving teamwork in healthcare: current approaches and the path forward.
        BMJ Qual Saf. 2011; 20: 647-650
        • Long T.
        • Genao I.
        • Horwitz L.I.
        Reasons for readmission in an underserved high-risk population: a qualitative analysis of a series of inpatient interviews.
        BMJ Open. 2013; 3: e003212
        • Heo S.
        • Moser D.K.
        • Chung M.L.
        • Lennie T.A.
        Social status, health-related quality of life, and event-free survival in patients with heart failure.
        Eur J Cardiovasc Nurs. 2012; 11: 141-149
        • Kangovi S.
        • Barg F.K.
        • Carter T.
        • Long J.A.
        • Shannon R.
        • Grande D.
        Understanding why patients of low socioeconomic status prefer hospitals over ambulatory care.
        Health Aff (Millwood). 2013; 32: 1196-1203
        • Weintraub N.L.
        • Collins S.P.
        • Pang P.S.
        • et al.
        Acute heart failure syndromes: emergency department presentation, treatment, and disposition: current approaches and future aims: a scientific statement from the American Heart Association.
        Circulation. 2010; 122: 1975-1996
        • Luttik M.L.
        • Jaarsma T.
        • Tijssen J.G.
        • van Veldhuisen D.J.
        • Sanderman R.
        The objective burden in partners of heart failure patients: development and initial validation of the Dutch Objective Burden Inventory.
        Eur J Cardiovasc Nurs. 2008; 7: 3-9