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Review ArticleClinical Review

Prognostic Indices for Advance Care Planning in Primary Care: A Scoping Review

Peter Kim, Jeanette M. Daly, Maresi A. Berry-Stoelzle, Megan E. Schmidt, LeAnn C. Michaels, David A. Dorr and Barcey T. Levy
The Journal of the American Board of Family Medicine March 2020, 33 (2) 322-338; DOI: https://doi.org/10.3122/jabfm.2020.02.190173
Peter Kim
From the Department of Family Medicine, University of Iowa Carver College of Medicine, Iowa City, IA (PK, JMD, MAB-S, MES, BTL); Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA (BTL); Oregon Rural Practice-based Research Network, Oregon Health & Science University, Portland, OR (LCM); Department of Medical Informatics and Clinical Epidemiology, Oregon Health and Science University, Portland, OR (DAD).
MD, MPH
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Jeanette M. Daly
From the Department of Family Medicine, University of Iowa Carver College of Medicine, Iowa City, IA (PK, JMD, MAB-S, MES, BTL); Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA (BTL); Oregon Rural Practice-based Research Network, Oregon Health & Science University, Portland, OR (LCM); Department of Medical Informatics and Clinical Epidemiology, Oregon Health and Science University, Portland, OR (DAD).
PhD, RN
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Maresi A. Berry-Stoelzle
From the Department of Family Medicine, University of Iowa Carver College of Medicine, Iowa City, IA (PK, JMD, MAB-S, MES, BTL); Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA (BTL); Oregon Rural Practice-based Research Network, Oregon Health & Science University, Portland, OR (LCM); Department of Medical Informatics and Clinical Epidemiology, Oregon Health and Science University, Portland, OR (DAD).
PhD, MD
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Megan E. Schmidt
From the Department of Family Medicine, University of Iowa Carver College of Medicine, Iowa City, IA (PK, JMD, MAB-S, MES, BTL); Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA (BTL); Oregon Rural Practice-based Research Network, Oregon Health & Science University, Portland, OR (LCM); Department of Medical Informatics and Clinical Epidemiology, Oregon Health and Science University, Portland, OR (DAD).
MEd, MPH
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LeAnn C. Michaels
From the Department of Family Medicine, University of Iowa Carver College of Medicine, Iowa City, IA (PK, JMD, MAB-S, MES, BTL); Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA (BTL); Oregon Rural Practice-based Research Network, Oregon Health & Science University, Portland, OR (LCM); Department of Medical Informatics and Clinical Epidemiology, Oregon Health and Science University, Portland, OR (DAD).
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David A. Dorr
From the Department of Family Medicine, University of Iowa Carver College of Medicine, Iowa City, IA (PK, JMD, MAB-S, MES, BTL); Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA (BTL); Oregon Rural Practice-based Research Network, Oregon Health & Science University, Portland, OR (LCM); Department of Medical Informatics and Clinical Epidemiology, Oregon Health and Science University, Portland, OR (DAD).
MD, MS
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Barcey T. Levy
From the Department of Family Medicine, University of Iowa Carver College of Medicine, Iowa City, IA (PK, JMD, MAB-S, MES, BTL); Department of Epidemiology, University of Iowa College of Public Health, Iowa City, IA (BTL); Oregon Rural Practice-based Research Network, Oregon Health & Science University, Portland, OR (LCM); Department of Medical Informatics and Clinical Epidemiology, Oregon Health and Science University, Portland, OR (DAD).
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Article Figures & Data

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    Figure 1.

    Final Search Query as displayed on PubMed.

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    Figure 2.

    Flow diagram of study selection process to identify potentially useful prognostic indices in the primary care setting to help initiate advance care planning, adapted from the PRISMA statement.24 Abbreviations: MeSH, Medical Subject Headings; ICU, intensive care unit

Tables

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    Table 1.

    Descriptive Statistics of the 17 Unique Indices*

    n%
    Time Frame for Mortality
     6 month20,2115.9
     1 year22–26529.4
     15 month2715.9
     2 year2815.9
     3 year29,30211.7
     4 year3115.9
     5 year32–37635.3
    Country
     United States20,21,25,26,28,30,31,34–371058.8
     United Kingdom22,23,33317.6
     Italy24,27211.8
     Russia2915.9
     South Korea3215.9
    C-statistics
     0.50 to 0.59 (poor)00
     0.60 to 0.69 (moderate)29,30211.7
     0.70 to 0.79 (good)22,23,25,31–34,38847.1
     0.80 to 0.89 (very good)20,21,24,26–28,36,37741.2
     0.90 to 1.00 (excellent)00
    Calibration
     Well calibrated1376.5
      <10% Difference22,24,26–28,30,31,34,35,371058.8
      Hosmer-Lemeshow P > .0533,36211.8
      Cox calibration regression25 (perfect calibration: α = 0, β = 1)15.9
     Poorly calibrated (>10% difference)3215.9
     Calibration curve only20,2115.9
     Not reported23,29211.8
    Usability†
     Clinically usable22,26–28,30,31,33,34,36,371058.8
     Not usable20,21,23–25,29,32,35741.2
    • ↵* Han et al.20 and Duarte et al.21 use the same index.

    • ↵† Usability: usable if the mortality risk can be calculated using the instrument and interpreted without referring to the text of the article and not usable otherwise.

  • Table 2.
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    Table 2.
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    Table 2.
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    Table 3.

    Evaluation of Prognostic Indices according to Usability and Time Frame of Mortality Outcome

    Reference by Tool UsabilityPopulation (Country)OutcomeWhere to Find Risk Tool and ScoringVariables Included in the Prognostic Index*
    Clinically Usable†
    Hippisley-Cox and Coupland (2017)22Primary care patients aged 65 or older (England)1-year all-cause mortalityInstrument and scoring information not found in article.
    QMortality−2017 risk calculator (https://qmortality.org/, accessed April 30, 2019)
    Demographics: age, ethnic group
    Medications: antipsychotics, corticosteroids
    Social history: alcohol intake, smoking status, living in a care home
    Vital signs/labs: abnormal liver function test result, anemia, body mass index, high platelet count
    Medical diagnosis: asthma or chronic obstructive pulmonary disease, atrial fibrillation, cancer, cardiovascular disease, chronic kidney disease, chronic liver disease or pancreatitis, congestive heart failure, dementia, diabetes type 1, diabetes type 2, epilepsy, learning disability, leg ulcer, Parkinson’s disease, rheumatoid arthritis, venous thromboembolism
    Functional measures: Townsend deprivation score, poor mobility
    Other: unplanned hospital admissions in the past 12 months, visits to a general practitioner in the past 12 months with either appetite loss, unexplained weight loss, or dyspnea
    Gagne et al. (2011)26Medicare enrollees aged 65 years or older (United States)1-year all-cause mortalityInstrument is presented in Table 3 and how to interpret score in bottom panel Figure 2.26
    Gagne Index (https://eprognosis.ucsf.edu/gagne.php, accessed April 30, 2019)
    Medical diagnosis: alcohol abuse, deficiency anemia, any tumor, cardiac arrhythmias, chronic pulmonary disease, coagulopathy, complicated diabetes, congestive heart failure, dementia, fluid and electrolyte disorders, hemiplegia, HIV/AIDS, hypertension, liver disease, metastatic cancer, peripheral vascular disorder, psychosis, pulmonary circulation disorders, renal failure, weight loss
    Mazzaglia et al. (2007)27Community-dwelling adults aged 65 years and older (Italy)15-month all-cause mortalityInstrument and how to interpret score are partially available in the article (Table 2 and Figure 1A).27 Authors do not state how to score the 7-item screening test (p. 1956).
    Mazzaglia Index (https://eprognosis.ucsf.edu/mazzaglia.php, accessed April 30, 2019)
    Demographics: age, sex
    Medications: ≥5 prescription medications
    Functional measures: positive responses to a screening test45 (need help in performing basic ADL, need help in performing IADL, poor vision, poor hearing, weight loss, use of homecare services, and self-perceived inadequacy of income)
    Other: hospitalization in the previous 6 months
    Carey et al. (2004)28Frail community-dwelling adults aged 70 years and older (United States)2-year all-cause mortalityInstrument in Table 3 and interpretation of scoring in Table 4.28 Carey 2 Year Index (https://eprognosis.ucsf.edu/carey2.php, accessed April 30, 2019)Demographics: age, sex
    Functional measures: dependence in bathing, dependence in shopping, difficulty walking several blocks, difficulty pulling/pushing heavy objects
    Carey et al. (2008)30Community-living patients aged 75 years and older enrolled in the Program of All-Inclusive Care for the Elderly (United States)1-, 2-, and 3-year all-cause mortalityInstrument in Table 3 and interpretation of scoring in Table 4.30 Carey 3 index available online (https://eprognosis.ucsf.edu/carey3.php, accessed April 30, 2019)Demographics: age, male sex
    Medical diagnosis: congestive heart failure, chronic obstructive pulmonary disease, malignant neoplasm, renal failure or insufficiency
    Functional measures: dependence in toileting, dependence in dressing
    Lee et al. (2006)31Community-dwelling adults aged 50 years and older (United States)4-year all-cause mortalityInstrument available in the article (Box on p. 807), score interpretation Table 4.31
    Calculator online (https://eprognosis.ucsf.edu/lee.php, accessed April 30, 2019)
    Demographics: age, male sex
    Social history: current smoker
    Vital signs/labs: BMI < 25
    Medical diagnosis: diabetes mellitus, cancer, lung disease, heart failure,
    Functional measures: bathing, managing finances, walking several blocks, pushing/pulling heavy objects
    Ganna & Ingelsson (2015)33Community-based participants aged 40 to 70 years (United Kingdom)5-year all-cause mortalityInstrument available online, but not in the article. (https://www.ubble.co.uk/risk-calculator/, accessed April 30, 2019)Women
    Demographics: age, gender
    Social history: financial assistance, smoking history
    Medical diagnosis: cancer
    Functional measures: disability or infirmity, usual walking pace
    Other: number of live births, presence of long-standing illness, self-rated overall health, serious life events in the past 2 years, visit with a general practitioner for nerves, anxiety, tension or depression
    Men
    Demographics: age, gender
    Social history: financial assistance, number of vehicles owned in a household, number of people living in house, relatedness of people living in house, smoking history
    Medical diagnosis: diabetes, cancer, history of heart attack, angina, stroke, or high blood pressure
    Functional measures: usual walking pace
    Others: self-rated overall health, serious life events in the past 2 years
    Mathias et al. (2013)34Outpatients aged 50 years and older (United States)5-year all-cause mortalityInstrument available online, but not in the article. (http://info.eecs.northwestern.edu/FiveYearLifeExpectancyCalculator, accessed September 2019)Demographics: age, sex
    Medications: digoxin prescription, loop diuretic prescription
    Vital signs/labs: mean diastolic blood pressure, albumin—mean, median, standard deviation for the prior year, creatinine—mean, median, standard deviation for the prior year
    Medical diagnosis: any vascular disease, heart failure, hypertension, chronic kidney disease, diabetes mellitus, dementia, HIV, anemia, any cancer, any liver disease
    Functional measures: number of visits to primary care provider in the year before the index visit, number of hospitalizations 0 to 1 year prior, number of hospitalizations 1 to 2 years prior
    Zhang et al. (2012)36Community-dwelling elderly population aged 70 years and older (United States)1- and 5-year all-cause mortalityInstrument and scoring available in the article (Figures 1 and 2).361-year
    Demographics: age, gender
    Medical diagnosis: coronary artery disease
    Functional measures: IADL stage
    5-year
    Demographics: age, gender
    Medical diagnosis: cancer, coronary artery disease, diabetes, other heart disease
    Functional measures: IADL stage
    Other: self-rated health status
    Schonberg et al. (2009)37Community-dwelling adults aged 65 and older (United States)5-year all-cause mortalityInstrument available in the article (Table 2) and scoring in Table 3.37
    Available online (https://eprognosis.ucsf.edu/leeschonberg.php, accessed April 30, 2019)
    Demographics: age, male sex
    Social history: smoking status
    Vital signs/labs: body mass index < 25
    Medical diagnosis: cancer, emphysema/chronic bronchitis, diabetes mellitus
    Functional measures: needs help of other persons handling routine needs, difficulty walking
    Others: overnight hospitalizations in past year, perceived health
    Not usable‡
    Duarte et al. (2015)21Primary and tertiary care patients aged 65 years and older (United States)6-month all-cause mortalityInstrument available in the Appendix (self-reported patient questionnaire)21; scoring not shown.Demographics: age, sex
    Social history: proxy status, smoking status
    Medical diagnosis: any cancer, congestive heart failure, chronic obstructive pulmonary disease
    Functional measures: activities of daily living, health-related quality of life
    Han et al. (2012)20Medicare Health Outcomes Survey respondents aged 65 years or older (United States)6-month all-cause mortalityNot in article or online.See Duarte et. al (2015)21
    Crooks et al. (2016)23Primary and secondary care patients aged 20 years and older (England)1-year all-cause mortalityNot in article or online.Social history: alcohol or illegal drug use
    Medical diagnosis: burns, chromosomal anomalies, cerebrovascular disease, chronic obstructive pulmonary disease, cirrhosis, dementia, diabetes, epilepsy, esophageal, heart conduction disorders, heart failure, interstitial lung disease, liver disease, lung disease due to external agents, malignancy of respiratory tract and intrathoracic organs, malignancy of lymphatic and hematopoietic tissue, metastases, neoplasm histology, nephritis, nephrosis and nephrotic syndrome, nondeficiency and nonhemolytic anemias, nonmalignant white cell, nonorganic psychoses, other central nervous system disorders, platelet and splenic disorders, paralysis, Parkinson’s disease, spinal disease, peripheral vascular disease, pleural disease, stomach and duodenal diseases
    Pilotto et al. (2013)24Community-dwelling adults aged 65 years and older (Italy)1-year all-cause mortalityA link to download free software program in Italian available in the article but must know Italian.
    (http://www.operapadrepio.it/impi/svamasetup.exe, accessed April 2019)
    Demographics: age, sex
    Social history: nursing care needs, social support network
    Functional measures: Barthel Index (activity of daily living and mobility)
    Others: Short Portable Mental Status Questionnaire, Exton-Smith Scale for pressure ulcer
    Wang et al. (2013)25Primary care patients of the Veterans Health Administration aged 18 to 110 years (United States)1-year all-cause mortalityNot in article or online.Demographics: age, sex
    Medications: alpha-blockers, Antidepressants, antiplatelet, angiotensin converting enzyme inhibitor/angiotensin receptor blocker, anticholinergics, antipsychotics, benzodiazepines, beta-agonists, beta-blockers, bumetanide, calcium channel blockers, digoxin, furosemide, HMG-CoA inhibitors, other hypertension drugs, insulin, metformin, metolazone, nitrate long lasting, nitrate short lasting, opioid narcotics, nonsteroidal antiinflammatory drug, nonstatin lipid lowering agents, thiazolidinediones, potassium-sparing diuretic, oral steroids, sulfonylureas, diuretic combinations, torsemide, warfarin
    Social history: substance abuse
    Vital signs/labs: albumin, blood pressure (diastolic), blood pressure (systolic), blood urea nitrogen, BMI, creatinine, diastolic blood pressure, systolic blood pressure, heart rate, respiration, potassium, white blood cell count
    Medical diagnosis: acute myocardial infarction, old myocardial infarction, unstable angina, stroke, hemiplegia, Atherosclerosis, depression, heart failure, respiratory failure, valvular heart disease, diabetes, hypertension, chronic obstructive pulmonary disease, pneumonia, peripheral vascular disease, metastatic cancer, psychotic disorder, liver disease, atrial fibrillation, post-traumatic stress disorder, mental disorder
    Other: malnutrition, function disease, trauma, coronary artery bypass graft surgery, enrollment priority group 1 to 8, Deyo-Charlson index, emergency room visits in the past year, cardiology visit in the past year, service connection ≥50%, number of providers, primary care visits in the past year, phone visits in the past year, other nonface visits in the past year, outpatient visits in the past year, mental health hospitalization in the past year, all hospitalization, number of medication refills
    Turusheva et al. (2017)29Community-dwelling adults aged 65 years and older (Russia)3-year all-cause mortalityInstrument in Box 1.29
    Interpretation unclear.
    Model 1
    Demographics: age, male sex
    Vital signs/labs: anemia, forced expiratory volume in 1 second/Height3, mid-arm muscle area
    Functional measures: Short physical performance battery
    Model 2
    Demographics: age, male sex
    Vital signs/lab: brain natriuretic peptide, anemia, C-Reactive Protein, mid-arm muscle area, forced expiratory volume in 1 second/Height3
    Functional measures: Short physical performance battery
    Jung et al. (2016)32Community-dwelling adults aged 65 years and older (South Korea)3- and 5-year all-cause mortalityApplication for mobile devices is available for download in Korean (personal communication with authors).Demographics: age, gender
    Functional measures: activities of daily living, instrumental activities of daily living
    Other: Charlson Comorbidity Index or Cumulative Illness Rating Scale for Geriatrics, Korean version of the Geriatric Depression Scale, Korean Mini-Mental State Examination, Mini Nutritional Assessment or Nutrition Screening Initiative
    Tan et al. (2013)35Medicare beneficiaries aged 66 to 90 years (United States)1- and 5-year all-cause mortalityNot in article or online.Demographics: age
    Social history: alcohol abuse, drug abuse
    Medical diagnosis: acquired immunodeficiency syndrome, cardiac arrhythmia, chronic pulmonary disease, chronic blood loss anemia, coagulopathy, congestive heart failure, deficiency anemia, depression, diabetes without chronic complications, diabetes with chronic complications, fluid and electrolyte disorders, hypertension (uncomplicated), hypertension (complicated), hypothyroidism, liver disease, lymphoma, metastatic cancer, neurological disorders other than paralysis, obesity, paralysis, peptic ulcer disease excluding bleeding, peripheral vascular disease, psychoses, pulmonary circulation disease, renal failure, rheumatoid arthritis/collagen vascular disease, solid tumor without metastasis, valvular disease, weight loss
    • BMI, body mass index; HMG-CoA, β-hydroxy β-methylglutaryl-CoA. ADL, activities of daily living; IADL, instrumental activities of daily living.

    • ↵* Not shown if the prognostic index did not have variables in one of the major categories (demographics, medications, social history, vital signs/labs, medical diagnosis, functional measures, and other).

    • ↵† Clinically usable if the mortality risk can be calculated using the instrument and interpreted using tables and/or figures in the paper without referring to the main text in the article, and not usable otherwise or if risk calculator is in a language other than English.

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The Journal of the American Board of Family  Medicine: 33 (2)
The Journal of the American Board of Family Medicine
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Prognostic Indices for Advance Care Planning in Primary Care: A Scoping Review
Peter Kim, Jeanette M. Daly, Maresi A. Berry-Stoelzle, Megan E. Schmidt, LeAnn C. Michaels, David A. Dorr, Barcey T. Levy
The Journal of the American Board of Family Medicine Mar 2020, 33 (2) 322-338; DOI: 10.3122/jabfm.2020.02.190173

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Prognostic Indices for Advance Care Planning in Primary Care: A Scoping Review
Peter Kim, Jeanette M. Daly, Maresi A. Berry-Stoelzle, Megan E. Schmidt, LeAnn C. Michaels, David A. Dorr, Barcey T. Levy
The Journal of the American Board of Family Medicine Mar 2020, 33 (2) 322-338; DOI: 10.3122/jabfm.2020.02.190173
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