Understanding What Is Most Important to Individuals with Multiple Chronic Conditions: A Qualitative Study of Patients’ Perspectives
To improve care for individuals living with multiple chronic conditions, patients and providers must align care planning with what is most important to patients in their daily lives. We have a limited understanding of how to effectively encourage communication about patients’ personal values during clinical care.
To identify what patients with multiple chronic conditions describe as most important to their well-being and health.
We interviewed individuals with multiple chronic conditions in their homes and analyzed results qualitatively, guided by grounded theory.
A total of 31 patients (mean age 68.7 years) participated in the study, 19 of which included the participation of family members. Participants were from Kaiser Permanente Washington, an integrated health care system in Washington state.
Qualitative analysis of home visits, which consisted of semi-structured interviews aided by photo elicitation.
Analysis revealed six domains of what patients described as most important for their well-being and health: principles, relationships, emotions, activities, abilities, and possessions. Personal values were interrelated and rarely expressed as individual values in isolation.
The domains describe the range and types of personal values multimorbid older adults deem important to well-being and health. Understanding patients’ personal values across these domains may be useful for providers when developing, sharing, and following up on care plans.
KEY WORDSchronic disease comorbidity qualitative research communication values
- 10.National Quality Forum. Multiple Chronic Conditions Measurement Framework. Washington, D.C.: National Quality Forum; 2012.Google Scholar
- 14.American Geriatrics Society Expert Panel on the Care of Older Adults with Multimorbidity. Patient-centered care for older adults with multiple chronic conditions: a stepwise approach from the American Geriatrics Society. J Am Geriatr Soc. 2012;60(10):1957-1968. doi:10.1111/j.1532-5415.2012.04187.x.CrossRefPubMedCentralGoogle Scholar
- 17.O’Connor AM, Bennett CL, Stacey D, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2009;(3). doi:10.1002/14651858.CD001431.pub2.
- 19.JAMA Evidence. JAMAevidence Glossary. JAMAevidence Glossary. http://jamaevidence.mhmedical.com/glossary.aspx. Published June 2014.
- 20.Friedman B, Jr PHK, Borning A, Huldtgren A. Value sensitive design and information systems. In: Doorn N, Schuurbiers D, Poel I van de, Gorman ME, eds. Early Engagement and New Technologies: Opening up the Laboratory. Philosophy of Engineering and Technology. Netherlands: Springer; 2013:55-95. doi:10.1007/978-94-007-7844-3_4.
- 22.Lim C, Berry ABL, Hirsch T, et al. “It just seems outside my health”: how patients with chronic conditions perceive communication boundaries with providers. In: Proceedings of the 2016 ACM Conference on Designing Interactive Systems. DIS ‘16. Brisbane, Australia: ACM; 2016:1172–1184. doi:10.1145/2901790.2901866.
- 23.National Committee for Quality Assurance (NCQA). HEDIS® & Performance Measurement. National Committee for Quality Assurance (NCQA) http://www.ncqa.org/hedis-quality-measurement.
- 26.Berry ABL, Lim C, Hartzler AL, et al. How values shape collaboration between patients with multiple chronic conditions and spousal caregivers. In: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems. CHI ‘17. Denver, CO: ACM; 2017. doi:10.1145/3025453.3025923.
- 27.Le Dantec CA, Edwards WK. Designs on dignity: perceptions of technology among the homeless. In: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI ‘08). 2008:627–636. doi:10.1145/1357054.1357155.
- 28.Charmaz K. Constructing grounded theory: a practical guide through qualitative research. Sage Publications Ltd Lond; 2006.Google Scholar
- 33.Witteman HO, Scherer LD, Gavaruzzi T, et al. Design features of explicit values clarification methods a systematic review. Med Decis Making. 2016:0272989X15626397. doi:10.1177/0272989X15626397.
- 34.Wieten S. “What the patient wants”: an investigation of the methods of ascertaining patient values in evidence-based medicine and values-based practice. J Eval Clin Pract. 2015. doi:10.1111/jep.12471.
- 54.McDaid O, Hanly MJ, Richardson K, Kee F, Kenny RA, Savva GM. The effect of multiple chronic conditions on self-rated health, disability and quality of life among the older populations of Northern Ireland and the Republic of Ireland: a comparison of two nationally representative cross-sectional surveys. BMJ Open. 2013;3(6):e002571. doi:10.1136/bmjopen-2013-002571.CrossRefPubMedPubMedCentralGoogle Scholar
- 55.Berry ABL, Lim C, Hartzler AL, Hirsch T, Ludman EJ, Wagner EH. Eliciting values of patients with multiple chronic conditions: evaluation of a patient-centered framework. AMIA Annu Symp Proc. Forthcoming 2017.Google Scholar