Abstract
Purpose
Diabetes care has largely focused on reducing the risk of complications by achieving hemoglobin A1c (HbA1c) targets; yet, whole-person care may be more effective and desirable. We sought to determine the nature of discussions about quality of life, burden of treatment, hypoglycemia, sexual function, and social support during diabetes-focused clinical encounters.
Methods
We analyzed 41 previously recorded clinical encounters with patients with type 2 diabetes from the control arms of practice-based trials of shared decision-making. Two coders evaluated videos for discussions about aspects of life with diabetes: quality of life, burden of treatment, hypoglycemia, sexual function, and social supports. When an aspect was raised, coders evaluated the nature of the conversation, clinician responses, and time spent on discussing the aspect.
Results
Median length of the encounter was 15 min, 6 s (IQR: 11:16–20:23 min). Overall, 35 of 41 encounters (85.4%) included some discussion of quality of life (58.5%), burden of treatment (51.2%), social support (2.4%), or hypoglycemia (9.8%). Sexual function was not discussed. On average, 4.5% (1.4–5.5%) of the encounter time involved conversations about HbA1c, whereas 15.0% (0–25%) of the encounter time was spent on some aspect of quality of life, burden of treatment, social support, or hypoglycemia. If a topic related to quality of life was raised, clinicians most often responded by acknowledging patient’s concern without providing a solution (45.8%).
Conclusions
A significant part of the patient–clinician encounter involves discussion of quality of life and burden of treatment, but clinicians rarely address these issues by providing solutions.
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Data availability
Videos for analysis were obtained from prior studies and approved for use by Mayo Clinic IRB.
References
S. Wild, G. Roglic, A. Green, R. Sicree, H. King, Global prevalence of diabetes: estimates for the year 2000 and projections for 2030. Diabetes Care. 27(5), 1047–1053 (2004). https://doi.org/10.2337/diacare.27.5.1047
UKPDS Group, UK Prospective Diabetes Study 17: a nine-year update of a randomized, controlled trial on the effect of improved metabolic control on complications in non-insulin-dependent diabetes mellitus. Ann. Intern. Med. 124, 136–145 (1996)
A. Trikkalinou, A.K. Papazafiropoulou, A. Melidonis, Type 2 diabetes and quality of life. World J. Diabetes 8(4), 120–129 (2017). https://doi.org/10.4239/wjd.v8.i4.120
K.W. Watkins, C.M. Connell, J.T. Fitzgerald, L. Klem, T. Hickey, B. Ingersoll-Dayton, Effects of adults’ self-regulation of diabetes on quality of life outcomes. Diabetes Care 23(10), 1511–1515 (2000). https://doi.org/10.2337/diacare.23.10.1511
Q. Ngo-Metzger, D.H. Sorkin, J. Billimek et al. The effects of financial pressures on adherence and glucose control among racial/ethnically diverse patients with diabetes. J. Gen. Intern. Med. 27, 432–437 (2012). https://doi.org/10.1007/s11606-011-1910-7
P.B. Parikh, J. Yang, S. Leigh et al. The impact of financial barriers on access to care, quality of care and vascular morbidity among patients with diabetes and coronary heart disease. J. Gen. Intern. Med. 29, 76–81 (2014). https://doi.org/10.1007/s11606-013-2635-6
L. Fisher, W.H. Polonsky, D. Hessler, Addressing diabetes distress in clinical care: a practical guide. Diabet. Med. 36, 803–812 (2019). https://doi.org/10.1111/dme.13967
A. Qaseem, T.J. Wilt, D. Kansagara, C. Horwitch, M.J. Barry, M.A. Forciea, Clinical Guidelines Committee of the American College of Physicians. Hemoglobin A1c Targets for Glycemic Control With Pharmacologic Therapy for Nonpregnant Adults With Type 2 Diabetes Mellitus: A Guidance Statement Update From the American College of Physicians. Ann Intern Med. 168(8), 569–576 (2018). https://doi.org/10.7326/M17-0939
B. Krista, E. Scoville, N.D. Shippee, C.R. May, V.M. Montori, Overwhelmed patients. Diabetes Care 35(1), 47–49 (2012). https://doi.org/10.2337/dc11-1082
R.J. Mullan, V.M. Montori, N.D. Shah et al. The diabetes mellitus medication choice decision aid: a randomized trial. Arch. Intern. Med. 169(17), 1560–1568 (2009). https://doi.org/10.1001/archinternmed.2009.293
M.I. Maiorino, G. Bellastella, K. Esposito, Diabetes and sexual dysfunction: current perspectives. Diabetes Metab Syndr Obes. 6(7), 95–105 (2014). https://doi.org/10.2147/DMSO.S36455
L. Fisher. Quality of Life: Issues of Conceptualization and Measurement. (American Diabetes Association, New Orleans, LA, 2016)
N. Perrin, M. Davies, N. Robertson, F.J. Snoek, K. Khunti, The prevalence of diabetes‐specific emotional distress in people with type 2 diabetes: a systematic review and meta‐analysis. Diabet. Med. 34, 1508–1520 (2017)
V.T. Tran, C. Barnes, V.M. Montori et al. Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions. BMC Med. 13, 115 (2015). https://doi.org/10.1186/s12916-015-0356-x
A. Sav, E. Kendall, S.S. McMillan, F. Kelly, J.A. Whitty, M.A. King, A.J. Wheeler, ‘You say treatment, I say hard work’: treatment burden among people with chronic illness and their careers in Australia. Health Soc. Care Community 21(6), 665–674 (2013). https://doi.org/10.1111/hsc.12052
D.T. Eton, D. Ramalho de Oliveira, J.S. Egginton, J.L. Ridgeway, L. Odell, C.R. May, V.M. Montori, Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat. Outcome Meas. 3, 39–49 (2012). https://doi.org/10.2147/PROM.S34681
L. Fisher, J.T. Mullan, M.M. Skaff, R.E. Glasgow, P. Arean, D. Hessler, Predicting diabetes distress in patients with Type 2 diabetes: a longitudinal study. Diabet Med. 26(6), 622–627 (2009). https://doi.org/10.1111/j.1464-5491.2009.02730.x.
T.L. Albright, M. Parchman, S.K. Burge, Predictors of self‐care behavior in adults with type 2 diabetes: an RRNeST study. Fam. Med. 33, 354–360 (2001)
P. Enzlin, R. Rosen, M. Wiegel et al. Sexual dysfunction in women with type 1 diabetes: long-term findings from the DCCT/ EDIC study cohort. Diabetes Care 32(5), 780–785 (2009). https://doi.org/10.2337/dc08-1164
C.Y. Lau, A.K. Qureshi, S.G. Scott, Association between glycemic control and quality of life in diabetes mellitus. J. Postgrad. Med. 50(3), 189–193 (2004)
M.J. Kasteleyn, L. de Vries, A.L. van Puffelen, F.G. Schellevis, M. Rijken, R.C. Vos et al. Diabetes‐related distress over the course of illness: results from the diacourse study. Diabet. Med. 32, 1617–1624 (2015)
F.J. Snoek, M.A. Bremmer, N. Hermanns, Constructs of depression and distress in diabetes: time for an appraisal. Lancet Diabetes Endocrinol. 858, 135–137 (2015)
Centers for Disease Control and Prevention. Measuring Healthy Days: Population Assessment of Health-related Quality of Life. (Centers for Disease Control and Prevention, Atlanta, Georgia, 2000)
K.I. Gallacher, C.R. May, P. Langhorne et al. A conceptual model of treatment burden and patient capacity in stroke. BMC Fam. Pr. 19, 9 (2018). https://doi.org/10.1186/s12875-017-0691-4
Funding
This study was funded by a National Institute on Aging R21 grant (1R21AG061427). The funding body did not have a role in the study design and will not take part in data collection, analysis, or interpretation for the study. Funding body did not participate in writing this manuscript.
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Contributions
Conception and design of the work, interpretation of data for the work, revision for critically important intellectual content, and final approval of the version to be published: all authors. Acquisition of data: V.M. Data analysis: S.H. and O.E.K. Drafting of the manuscript: S.H. Funding and supervision were provided by V.M. and K.J.L.
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Conflict of interest
K.J.L. reports that she received support from the Centers for Medicare & Medicaid Services to develop and evaluate publicly reported quality measures. Other authors declare that they have no competing interests.
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Informed consent was obtained prior to interview and video recording.
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Participants signed informed consent about publication of data.
Ethics approval
All procedures were approved by the Mayo Clinic IRB under protocols: (#19-004560), (#09-008640), and (#10-006952).
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Appendices
Appendix 1
QBSAFE videographic codebook: the purpose of this codebook is to help identify aspects and examples of quality of life, burden of treatment, social support, hypoglycemia, and sexual dysfunction for the use of coders analyzing clinician video encounters
QBSAFE | Definition | Examples in clinician encounter | |
---|---|---|---|
Health-related quality of life [QOL] | |||
“An individual’s or group’s perceived physical and mental health over time…includes physical and mental health perceptions and their correlates…” [1]. | • Overall general health • Physical well-being • Mental health, i.e., mood, depression, anxiety, stress, etc. • Pain ○ Code as QOL if diet/exercise limited by pain ○ Numbness/tingling • Fatigue ○ Code as QOL if diet/exercise limited by fatigue • Visual impairment • Difficulty in carrying out daily activities due to disability, i.e., weakness from prior stroke, amputation, etc. • Mention of other comorbid condition affecting any of the above aspects | ||
Burden of treatment [BoT] | |||
“The workload of healthcare experienced by those with long-term conditions and the impact it has on well-being” [3]. | • Difficulties in administering and/or taking meds • Difficulties in frequency of drug administration • Trouble with self-monitoring • Problems with attending or keeping doctor appointments • Issues with transportation to and from appointments • Problems with scheduling doctor follow ups • Financial burden of disease • Difficulties in relationships secondary to BoT • Difficulties in compliance with diet and exercise otherwise not attributable to QOL | ||
Hypoglycemia | |||
Defined as an episode of blood glucose reading less than 70. > Did not include episodes where patients felt hypoglycemic but had normal blood glucose levels. > Did not include episodes where patients described symptoms and did not check blood glucose levels. | • Reduced awareness of hypoglycemia • Frequency of hypoglycemia • Severity of hypoglycemia | ||
Social support | |||
Includes both objective absence of social contact as well as perceived loneliness. | • Feeling of loneliness • Lack of social network • Difficulty connecting with social network/circle • Reports issues in spending time with friends and family not otherwise related to BoT | ||
Sexual dysfunction | |||
Any report of sexual dysfunction in any cohort of patients. | • Erectile dysfunction • Decreased libido • Other issues related to sexual dysfunction |
Appendix 2
Video analysis questions
If an aspect of quality of life, burden of treatment, hypoglycemia, and social support was brought up during the clinical scenario, the following questions were used to analyze the scenario. |
---|
What aspect was brought up? [i.e., QOL, BoT, hypoglycemia] |
Who initiated the conversation? |
What was the nature of the concern? [refer to Table 1] |
When conversation was initiated, did the clinician address the problem? |
[This was defined as the clinician asking any follow up questions or further discussion of the topic.] |
If the clinician addressed the problem, how did they go about addressing it: |
Acknowledge without proposing a solution. |
Propose to monitor and/or observe. |
Order additional testing. |
Referral to specialist. |
Change of medication regiment or treatment. |
[including addition of new medication or diet/exercise recommendations] |
Change of frequency or method of monitoring. |
Change in frequency of follow up. |
Time spent on each aspect brought up. |
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Haider, S., El Kawkgi, O., Clark, J. et al. Beyond hemoglobin A1c: a videographic analysis of conversations about quality of life and treatment burden during clinical encounters for diabetes care. Endocrine 73, 573–579 (2021). https://doi.org/10.1007/s12020-021-02757-3
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DOI: https://doi.org/10.1007/s12020-021-02757-3