Considering the Balance: Development of a Scale to Assess Patient Views on Trade‐Offs in Competing Health Outcomes

Case, Siobhan; Towle, Virginia; Fried, Terri R.

doi:10.1111/jgs.12358

Cited by 14 publications

(20 citation statements)

References 30 publications

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“…We developed a focus group guide based on prior work eliciting patient-defined goals and treatment preferences in older adults with dementia, other chronic illnesses, and near the end of life 5–7, 9, 11, 18, 22–28 and based on input from Study Oversight Committee members including geriatricians, nurse practitioner dementia care managers, representatives from community-based organizations that provide dementia-related services, and persons with dementia and their caregivers.…”

Section: Methodsmentioning

confidence: 99%

Patient and caregiver goals for dementia care

et al. 2016

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Purpose Most health outcome measures for chronic diseases do not incorporate specific health goals of patients and caregivers. To elicit patient-centered goals for dementia care, we conducted a qualitative study using focus groups of people with early-stage dementia and dementia caregivers. Methods We conducted 5 focus groups with 43 participants (7 with early-stage dementia and 36 caregivers); 15 participants were Spanish-speaking. Verbatim transcriptions were independently analyzed line-by-line by two coders using both deductive and inductive approaches. Coded texts were grouped into domains and developed into a goal inventory for dementia care. Results Participants identified 41 goals for dementia care within five domains (medical care, physical quality of life, social and emotional quality of life, access to services and supports, and caregiver support). Caregiver goals included ensuring the safety of the person with dementia and managing caregiving stress. Participants with early-stage dementia identified engaging in meaningful activity (e.g., work, family functions) and not being a burden on family near the end of life as important goals. Participants articulated the need to readdress goals as the disease progressed and reported challenges in goal-setting when goals differed between the person with dementia and the caregiver (e.g., patient safety vs. living independently at home). While goals were similar among English and Spanish-speaking participants, Spanish-speaking participants emphasized the need to improve community education about dementia. Conclusions Patient- and caregiver-identified goals for care are different than commonly measured health outcomes for dementia. Future work should incorporate patient-centered goals into clinical settings and assess their usefulness for dementia care.

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Section: Methodsmentioning

confidence: 99%

Patient and caregiver goals for dementia care

et al. 2016

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“…A score of 50 indicates equal importance of present and future QOL, while scores >50 favor present QOL and scores <50 favor future QOL. Finally, the Time and Outcome Preference (TOP) Scale assesses attitudes toward the most detailed representation of tradeoffs by presenting statements specifying outcomes(21). Subscale 1, Quality vs.…”

Section: Methodsmentioning

confidence: 99%

“…This study focuses on the relationship between universal health outcome priorities expressed using three tools (20, 21)and older persons’ preferences when faced with a specific medical decision. The tools vary in their descriptions of tradeoffs among universal outcomes from highly general terms to more detailed examples.…”

Section: Introductionmentioning

confidence: 99%

Relationship Between Universal Health Outcome Priorities and Willingness to Take Medication for Primary Prevention of Myocardial Infarction

Case

OʼLeary

Kim

et al. 2014

J American Geriatrics Society

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OBJECTIVES Patients with multiple medical conditions face many treatment decisions involving tradeoffs between benefits and harms of medications. Asking patients about their priorities regarding universal health outcomes that are common across different conditions could simplify this process. However, it is not known how well universal health outcome priorities represent patients’ preferences in specific clinical situations. DESIGN Observational cohort study. SETTING Community. PARTICIPANTS Three hundred and fifty seven community-dwelling adults age ≥ 65. MEASUREMENTS Participants used three tools assessing universal health outcome priorities related to two common tradeoffs: quality versus quantity of life, and future health versus present inconveniences/burdens of treatment. We analyzed the tools’ ability to identify participants who were unwilling to take a medication that reduced the risk of myocardial infarction but caused dizziness and fatigue. RESULTS There were consistent and significant associations between unwillingness to take the medication and prioritizing quality of life or future health on all three tools in the expected direction (p<.05). Despite these associations, the positive and negative predictive values for the tools were generally modest (PPV/NPV 0.49-0.83). The tool with the most specific statements resembling the medication scenario had the best specificity (0.97) and PPV (0.83). CONCLUSION Universal health outcome priorities were only modestly able to identify older persons who would be unwilling to take a medication for primary prevention of myocardial infarction that causes adverse effects. While tools that are the most general in their assessment of priorities have the benefit of being applicable across the widest range of scenarios, tools with greater specificity may be necessary to inform individual treatment decisions.

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“…A number of previous studies provide important data on issues that are related to our study, such as patients’ goals of care (Rosenfeld et al, 2000; Fried & Bradley, 2003; Kaldjian et al, 2008; Fried et al, 2011; Case et al, 2013) and factors patients consider important at the end of life (Doukas & Gorenflo, 1993; Mead et al, 1995; Ditto et al, 1996; Singer et al, 1998; 1999; Steinhauser et al, 2000; Patrick et al, 2001; Hawkins et al, 2005; Heyland et al, 2006; Emanuel, 2008; Kaldjian et al, 2008; Kirchhoff et al, 2010; Scheunemann et al, 2012). These studies typically address a broad range of considerations.…”

Section: Discussionmentioning

confidence: 99%

Patients' priorities for treatment decision making during periods of incapacity: quantitative survey

et al. 2014

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Objective Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making. Method We employed a self-administered, quantitative survey of patients in a tertiary care center. Results Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants. Significance of Results Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients’ treatment preferences. Clinicians should also discuss and document patients’ priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.

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Considering the Balance: Development of a Scale to Assess Patient Views on Trade‐Offs in Competing Health Outcomes

Cited by 14 publications

References 30 publications

Patient and caregiver goals for dementia care

Patient and caregiver goals for dementia care

Relationship Between Universal Health Outcome Priorities and Willingness to Take Medication for Primary Prevention of Myocardial Infarction

Patients' priorities for treatment decision making during periods of incapacity: quantitative survey

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