To the Editor:
Person-centered care is needed for the one-fifth of older adults in the United States with obstructive sleep apnea (OSA).(1, 2) At first glance, OSA treatment decisions appear straightforward, with positive airway pressure (PAP) considered by many as the optimal strategy. But the challenges of PAP adherence are well-known. Personalization of OSA care entails placing OSA treatment decisions in the context of individual priorities and other health and social issues.(3) Asking older adults what matters most to them is a critical step to achieving personalized care, yet elicitation of health priorities in healthcare settings is uncommon.(4)
Patient decision aids are one strategy for helping older adults make informed decisions.(5) Although inquiring about health priorities is not a core component of most decision aids, incorporating health priority elicitation enhances decision aid effectiveness and is important if the goal is to promote personalized decision making.(6) Our aim was to test a patient decision aid (Decide2Rest) prototype for personalizing treatment decisions among older adults with newly-diagnosed OSA.
Decide2Rest is a voice-narrated, web-based program. Users record responses to questions posed on the webpages on a paper workbook.(7) The clinical sequelae of untreated OSA and the benefits and risks of treatment options (as well as no treatment) are presented qualitatively. The user rates the importance of eight long-term health goals, and the relationships between OSA treatment and the different health priorities are described. Users record their preferred treatment and identify the treatment aspects that matter most. They self-assess their level of OSA knowledge, support for making decisions, and involvement of others in their lives in OSA decisions. It concludes with resources and advises clinic follow-up to discuss treatment options.
Participants were patients referred to a sleep center for OSA testing. Inclusion criteria were: 1) age ≥ 60 years, 2) apnea-hypopnea index (AHI) ≥ 5 and newly-diagnosed with OSA, and 3) agreed to sleep clinic appointment. Exclusion criteria were: 1) OSA treatment ≥ 30 days, 2) advanced bilevel device required, 3) unstable medical/psychiatric illness, 4) Mini-Mental State Examination total score < 24, or 5) unable to use an English-language decision aid. All study procedures were approved (PCC #2013–081086). Research staff administered the program within one month of therapy initiation and 14 days of the scheduled sleep clinic appointment. A staff sleep physician called patients to deliver OSA testing results prior to an initial in-person consultation (usual care).
Demographics, comorbidity (8), usability (9), and acceptability (10) were collected. The Decide2Rest workbook included eight questions assessing health priorities. Session start and end times were collected. The Decisional Conflict Scale (DCS; 16 items, 5 strongly agree to strongly disagree response options) was administered after the program and sleep clinic appointment.(11) DCS scores exceeding 37.5 are associated with decision delay or feeling unsure about moving forward with a decision.(11) Descriptive statistics were computed using SAS, version 9.4.
Eighteen individuals completed the Decide2Rest program (mean age 68 years [range 61–78]; 94% male; 56% non-Hispanic white). The mean Comorbidity Index score was 6.4 (2.0–14.0). The mean pre-treatment AHI was 18.5 events per hour (7.0–63.2). Mean health priority ratings (1=Not at all important, 4=Extremely important) were: driving more safely and responsibly (3.3 ± 0.9), taking care of financial affairs (3.1 ± 0.9), engaging in more physical activity (3.0 ± 0.8), working more on hobbies (2.8 ± 0.9), doing more work in the home (2.8 ± 0.9), fulfilling more responsibilities for family, friends, or coworkers (2.7 ± 0.8), doing more work outside the home (2.5 ± 0.8), and participating more in social activities (2.4 ± 0.7). Mean completion time was 10 minutes (range 5–20). Acceptability and usability are summarized in Table 1. Most participants (89%) would recommend the program. The mean DCS score was 25.5 ± 19.1 (lower is better).
Table 1.
Usability Survey Items (1=strongly disagree; 4=strongly agree): | Mean (SD; range) |
---|---|
I would like using the educational package as a tool for learning about sleep | 3.1 (0.7; 1.0, 4.0) |
I found the educational package unnecessarily complex | 1.9 (0.5; 1.0, 3.0) |
I thought the educational package was easy to use | 3.2 (0.5; 2.0, 4.0) |
I think I would need the support of a technical person to be able to use the educational package | 2.1 (0.9; 1.0, 4.0) |
I found there was too much inconsistency between the design and navigation of the educational package | 1.9 (0.6; 1.0, 3.0) |
…Most patients would learn to use the educational package very quickly | 3.0 (0.3; 2.0, 4.0) |
I found the educational package very cumbersome to use | 1.9 (0.5; 1.0, 3.0) |
I would be very confident using the educational package | 3.2 (0.6; 2.0, 4.0) |
I would need to learn a lot of things about using computers before I could get going with the educational package | 1.7 (0.8; 1.0, 4.0) |
Acceptability Survey Items: | |
The length of the presentation was…. | |
1. Too Long | 3 (17) |
2. Too short | 0 |
3. Just right | 15 (83) |
The amount of information was …. | |
1. Too Long | 1 (6) |
2. Too short | 2 (11) |
3. Just right | 15 (83) |
The personal workbook…. | |
1. No impact on the decision | 4 (22) |
2. Made the decision difficult | 0 |
3. Made the decision easy | 14 (78) |
What did you think of the personal workbook? Did it make the decision about sleep apnea treatment… | |
1. More difficult | 1 (6) |
2. Easy | 16 (94) |
3. Just right | 0 |
I found the presentation……. | |
1. Slanted towards surgical option | 0 |
2. Slanted towards dental appliance option | 2 (11) |
3. Slanted towards positive airway pressure option | 2 (11) |
4. Slanted towards no treatment | 0 |
5. Balanced | 14 (78) |
The number of topics that were presented clearly | |
1. Some | 1 (6) |
2. Most | 11 (61) |
3. Everything | 6 (33) |
The educational package was useful in making a decision about sleep apnea treatment (% yes) | 17 (94) |
Would recommend the educational package to others (% yes) | 16 (89) |
There was enough information to decide among the options (% yes) | 14 (78) |
Program included enough information to help you decide on therapy for sleep apnea (% yes) | 17 (94) |
The Decide2Rest program elicited health priorities and contextualized the OSA treatment decision. It provided information about treatment features that might currently be omitted during clinic visit discussions. The DCS score was favorable and comparable to those observed in an osteoarthritis web-based decision aid study.(12)
Decide2Rest provides support to patients who prefer more involvement in treatment selection. Our finding that the program helped patients feel more informed suggests that it could promote shared decision-making. Because of the high reliance on self-management with OSA therapy, OSA treatment decisions in older adults should be personalized and patients should be involved and informed when making treatment decisions. The Decide2Rest program is a promising approach to promoting person-centered care.
ACKNOWLEDGMENTS
We thank the sleep research group staff at VA Greater Los Angeles Geriatric Research, Education and Clinical Center in Los Angeles, CA.
Funding sources: This study was funded by the National Institute on Aging of the National Institutes of Health (K23AG045937 to CHF, K23AG055668 to YS, K23AG049955 to JD) as well as the American Federation for Aging Research, The John A. Hartford Foundation and The Atlantic Philanthropies (The Beeson Career Development in Aging Research Award Program to CHF). RDH received support from the University of California, Los Angeles (UCLA) Resource Centers for Minority Aging Research Center for Health Improvement of Minority Elderly (RCMAR/CHIME) under NIH/NIA Grant P30-AG021684.
Footnotes
Prior presentation of work: An abstract of this work was presented at the American Geriatrics Society 2019 Annual Meeting in Portland, Oregon
Conflict of Interest:
Constance H. Fung, MD, MSHS declares that she has no financial or personal conflict of interest.
Jennifer L. Martin, PhD declares that she has no financial or personal conflict of interest.
Ron D. Hays, PhD declares that he has no conflict of interest.
Nananda Col, MD, MPP, MPH declares that she has no financial or personal conflict of interest.
Emily S. Patterson, PhD declares that she has no financial or personal conflict of interest.
Karen Josephson, MPH declares that she has no financial or personal conflict of interest.
Michael N. Mitchell, PhD declares that he has no financial or personal conflict of interest.
Austin Grinberg, PhD declares that he has no financial or personal conflict of interest.
Ravi Aysola, MD declares that he has no financial or personal conflict of interest.
Yeonsu Song, NP, PhD declares that she has no financial or personal conflict of interest.
Joseph M. Dzierzewski, PhD declares that he has no financial or personal conflict of interest.
Li-Jung Liang, PhD declares that she has no financial or personal conflict of interest.
David Huang, DrPh, MPH declares that he has no financial or personal conflict of interest.
Michelle Zeidler, MD, MS declares that she has no financial or personal conflict of interest.
Cathy Alessi, MD declares that she has no financial or personal conflict of interest.
Sponsor’s Role: The sponsor did not have any role in the design, methods, subject recruitment, data collection, analysis, or preparation of the manuscript.
REFERENCES
- 1.Young T, Peppard PE, Gottlieb DJ. Epidemiology of obstructive sleep apnea: a population health perspective. Am J Respir Crit Care Med 2002;165(9):1217–39. [DOI] [PubMed] [Google Scholar]
- 2.Mehra R, Stone KL, Blackwell T, Ancoli IS, Dam TT, Stefanick ML, et al. Prevalence and correlates of sleep-disordered breathing in older men: osteoporotic fractures in men sleep study. J Am Geriatr Soc 2007;55(9):1356–64. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Priority Setting for Healthcare Performance Measurement: Addressing Performance Measure Gaps in Person-Centered Care and Outcomes Washington, DC: National Quality Forum; 2014. [Google Scholar]
- 4.Case SM, O’Leary J, Kim N, Tinetti ME, Fried TR. Older Adults’ Recognition of Trade-Offs in Healthcare Decision-Making. J Am Geriatr Soc 2015;63(8):1658–62. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Collaboration IPDAS. What are Patient Decision Aids? 2012. [updated 6/20/2012]. Available from: http://ipdas.ohri.ca/what.html.
- 6.Witteman HO, Gavaruzzi T, Scherer LD, Pieterse AH, Fuhrel-Forbis A, Chipenda Dansokho S, et al. Effects of Design Features of Explicit Values Clarification Methods: A Systematic Review. Med Decis Making 2016;36(6):760–76. [DOI] [PubMed] [Google Scholar]
- 7.O’Connor AMS, D.; Jacobsen MJ Ottawa Personal Decision Guide In: Ottawa OHRIUo, editor. Canada2015. [Google Scholar]
- 8.Selim AJ, Fincke G, Ren XS, Lee A, Rogers WH, Miller DR, et al. Comorbidity assessments based on patient report: results from the Veterans Health Study. J Ambul Care Manage 2004;27(3):281–95. [DOI] [PubMed] [Google Scholar]
- 9.Brooke J SUS: A quick and dirty usability scale. In: Jordan PW, Weerdmeester B, Thomas A, Mclelland IL, editors. Usability Evaluation in Industry London: Taylor and Francis; 1996. [Google Scholar]
- 10.Evaluation Measures. 2012 [updated 2012]. Available from: http://decisionaid.ohri.ca/eval.html.
- 11.O’Connor AM. Validation of a decisional conflict scale. Med Decis Making 1995;15(1):25–30. [DOI] [PubMed] [Google Scholar]
- 12.Hoffman AS, Llewellyn-Thomas HA, Tosteson AN, O’Connor AM, Volk RJ, Tomek IM, et al. Launching a virtual decision lab: development and field-testing of a web-based patient decision support research platform. BMC Med Inform Decis Mak 2014;14:112. [DOI] [PMC free article] [PubMed] [Google Scholar]