Patients’ preferences for involvement in the decision-making process for treating diabetic retinopathy

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Abstract

Background

To assess factors associated with the preferred role of the attending ophthalmologist in the decision-making processes before treating diabetic retinopathy (DR).

Methods

Cross-sectional study of 810 adults attending secondary diabetes care centers (NCT02311504). Diabetes patients were classified using a validated questionnaire in an ophthalmologist-dominant decision-making (ODM), shared decision-making (SDM) and patient-dominant decision-making (PDM) style. Multivariate logistic regression was performed to determine factors associated with the decision-making process.

Results

A majority of 74.3% patients preferred SDM between ophthalmologist and patient, 17.4% patients wanted ODM, delegating the decision-making process to the ophthalmologist, 8.3% preferred the autonomous style of PDM. Patients wanting ODM were older (OR = 1.2 per decade, p = 0.013), had a lower level of education (OR = 1.4, p = 0.001) and had a higher frequency of consultations per year (OR = 1.3, p = 0.022). Patients with better basic knowledge in DR and memorizing their HbA ₁c level showed a higher propensity for SDM (OR = 1.1, p = 0.037).

Patients wanting PDM had a significantly higher education (OR = 1.3, p = 0.036) and a greater desire for receiving information from self-help groups (OR = 1.3, p = 0.015).

Conclusions

The first evaluation of the general patient wishes for the treatment of DR confirmed the concept of SDM, which was favored by three quarters. In particular, older patients with low educational attainment wanted to delegate the decision-making process to the ophthalmologist. Amelioration of ophthalmologic education in diabetic programs might take up patients’ propensity for SDM. Regardless of the decision-making group, nearly all patients wanted the medical and scientific information to be transferred by and shared with the ophthalmologist.

Trial registration

The study was registered on www.clinicaltrials.gov (identifier: NCT02311504) on December 4th 2014.

Electronic supplementary material

The online version of this article (doi:10.1186/s12886-017-0526-z) contains supplementary material, which is available to authorized users.

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Most cited references 23

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Randomized trial evaluating ranibizumab plus prompt or deferred laser or triamcinolone plus prompt laser for diabetic macular edema.

Michael Elman, Lloyd Paul Aiello, Roy Beck … (2010)

Evaluate intravitreal 0.5 mg ranibizumab or 4 mg triamcinolone combined with focal/grid laser compared with focal/grid laser alone for treatment of diabetic macular edema (DME). Multicenter, randomized clinical trial. A total of 854 study eyes of 691 participants with visual acuity (approximate Snellen equivalent) of 20/32 to 20/320 and DME involving the fovea. Eyes were randomized to sham injection + prompt laser (n=293), 0.5 mg ranibizumab + prompt laser (n=187), 0.5 mg ranibizumab + deferred (> or =24 weeks) laser (n=188), or 4 mg triamcinolone + prompt laser (n=186). Retreatment followed an algorithm facilitated by a web-based, real-time data-entry system. Best-corrected visual acuity and safety at 1 year. The 1-year mean change (+/-standard deviation) in the visual acuity letter score from baseline was significantly greater in the ranibizumab + prompt laser group (+9+/-11, P<0.001) and ranibizumab + deferred laser group (+9+/-12, P<0.001) but not in the triamcinolone + prompt laser group (+4+/-13, P=0.31) compared with the sham + prompt laser group (+3+/-13). Reduction in mean central subfield thickness in the triamcinolone + prompt laser group was similar to both ranibizumab groups and greater than in the sham + prompt laser group. In the subset of pseudophakic eyes at baseline (n=273), visual acuity improvement in the triamcinolone + prompt laser group appeared comparable to that in the ranibizumab groups. No systemic events attributable to study treatment were apparent. Three eyes (0.8%) had injection-related endophthalmitis in the ranibizumab groups, whereas elevated intraocular pressure and cataract surgery were more frequent in the triamcinolone + prompt laser group. Two-year visual acuity outcomes were similar to 1-year outcomes. Intravitreal ranibizumab with prompt or deferred laser is more effective through at least 1 year compared with prompt laser alone for the treatment of DME involving the central macula. Ranibizumab as applied in this study, although uncommonly associated with endophthalmitis, should be considered for patients with DME and characteristics similar to those in this clinical trial. In pseudophakic eyes, intravitreal triamcinolone + prompt laser seems more effective than laser alone but frequently increases the risk of intraocular pressure elevation. Copyright 2010 American Academy of Ophthalmology. Published by Elsevier Inc. All rights reserved.

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Decision making during serious illness: what role do patients really want to play?

L Degner, J A Sloan (1992)

Two surveys were conducted to determine what roles people actually want to assume in selecting cancer treatments. 436 newly diagnosed cancer patients and 482 members of the general public participated. Preferences were elicited using two card sort procedures, each of which described five potential roles in decision making. Findings suggested that the impact of being diagnosed with a life-threatening illness may influence preferences to participate. The majority (59%) of patients wanted physicians to make treatment decisions on their behalf, but 64% of the public thought they would want to select their own treatment if they developed cancer. Most patients (51%) and members of the public (46%) wanted their physician and family to share responsibility for decision making if they were too ill to participate. Sociodemographic variables accounted for only 15% of variance in preferences. These variables are not particularly useful in making predictions about which groups want more or less active roles in medical decision making.

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Information needs and decisional preferences in women with breast cancer.

L Degner, Sarah B. Mueller, John D Watson … (1997)

To determine the degree of involvement women with breast cancer wanted in medical decision making, extent to which they believed they had achieved their preferred level of involvement, and types of information they judged to be most important. Cross-sectional survey at 2 tertiary oncology referral clinics and 2 community hospital oncology clinics in Winnipeg, Manitoba. Consecutive sample of 1012 women with a confirmed diagnosis of breast cancer who were scheduled for a visit at 1 of 4 hospital oncology clinics. The following measures were used: (1) Preferences about various levels of participation in treatment decision making; (2) the extent to which subjects believed they had achieved their preferred levels of involvement in decision making; and (3) priority needs for information and how these needs differed by selected sociodemographic, disease, and treatment variables. A total of 22% of women wanted to select their own cancer treatment, 44% wanted to select their treatment collaboratively with their physicians, and 34% wanted to delegate this responsibility to their physicians. Only 42% of women believed they had achieved their preferred level of control in decision making. The 2 most highly ranked types of information were related to knowing about chances of cure and spread of disease. Women younger than 50 years rated information about physical and sexual attractiveness as more important than did older women (P<.001); women older than 70 years rated information about self-care as more important than did younger women (P=.002); and women who had a positive family history of breast cancer rated information about family risk as more important than did other women (P=.03). The substantial discrepancy between women's preferred and attained levels of involvement in treatment decision making suggests that systematic approaches to assess and respond to women's desired level of participation in treatment decision making need to be evaluated. Priorities for information identified in this study provide an empirical basis to guide communication with women seeking care for breast cancer.

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Author and article information

Contributors

Lydia Marahrens: Lydia.Marahrens@med.uni-tuebingen.de

Raimar Kern: Raimar.Kern@uniklinikum-dresden.de

Tjalf Ziemssen: Tjalf.Ziemssen@uniklinikum-dresden.de

Andreas Fritsche: Andreas.Fritsche@med.uni-tuebingen.de

Peter Martus: Peter.Martus@med.uni-tuebingen.de

Focke Ziemssen:

ORCID: http://orcid.org/0000-0002-3873-0581

focke.ziemssen@med.uni-tuebingen.de

Daniel Roeck: Daniel.Roeck@med.uni-tuebingen.de

Journal

Journal ID (nlm-ta): BMC Ophthalmol

Journal ID (iso-abbrev): BMC Ophthalmol

Title: BMC Ophthalmology

Publisher: BioMed Central (London )

ISSN (Electronic): 1471-2415

Publication date (Electronic): 9 August 2017

Publication date PMC-release: 9 August 2017

Publication date Collection: 2017

Volume: 17

Electronic Location Identifier: 139

Affiliations

[1 ]ISNI 0000 0001 2190 1447, GRID grid.10392.39, Center for Ophthalmology, , Eberhard Karls University of Tuebingen, ; Tuebingen, Germany

[2 ]Department of Neurology, Center of Clinical Neuroscience, University Hospital Carl Gustav Carus, Dresden University of Technology, Dresden, Germany

[3 ]ISNI 0000 0001 2190 1447, GRID grid.10392.39, , German Centre for Diabetes Research (DZD), Institute for Diabetes Research and Metabolic Diseases of the Helmholtz Centre Munich at the University of Tuebingen, ; Tuebingen, Germany

[4 ]ISNI 0000 0001 2190 1447, GRID grid.10392.39, , Institute of Clinical Epidemiology and applied Biostatistics University of Tuebingen, ; Tuebingen, Germany

Author information

Focke Ziemssen http://orcid.org/0000-0002-3873-0581

Article

Publisher ID: 526

DOI: 10.1186/s12886-017-0526-z

PMC ID: 5551005

PubMed ID: 28793881

SO-VID: 51f0b9c5-0abd-4ec4-a465-8623a8d2c4ff

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 18 April 2016

Date accepted : 18 July 2017

Funding

Funded by: FundRef http://dx.doi.org/10.13039/100008792, Novartis Pharma;

Award ID: DiabCheck

Award Recipient : Focke Ziemssen

Custom metadata

ScienceOpen disciplines: Ophthalmology & Optometry

Keywords: adherence,diabetic retinopathy,decision-making,treatment,disease knowledge

Data availability:

ScienceOpen disciplines: Ophthalmology & Optometry

Keywords: adherence, diabetic retinopathy, decision-making, treatment, disease knowledge

Patients’ preferences for involvement in the decision-making process for treating diabetic retinopathy

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Thermal Imaging in Social Decision Making

Most cited references 23

Randomized trial evaluating ranibizumab plus prompt or deferred laser or triamcinolone plus prompt laser for diabetic macular edema.

Decision making during serious illness: what role do patients really want to play?

Information needs and decisional preferences in women with breast cancer.

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