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Cited by 7Palliative Care and End-of-Life IssuesPalliative and Oncologic CarePatient-Provider Communication in Healthcare

Measuring a Patient's understanding of their prognosis: An exploratory analysis

Open access
Rosenfeld, Barry, Walsh, Leah E., Zhu, Danqi, Cham, Heining, Polacek, Laura C., Duva, Melissa M., Applebaum, Allison J.·2022·Psycho-Oncology
DOI 10.1002/pon.6007PMC PMC9547961
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Abstract

Objective: In patients with cancer across the illness trajectory, treatment decisions are often influenced by one's perception of their prognosis (i.e., curability of disease, life expectancy, quality of life). However, research on how patients understand their prognosis (i.e., prognostic understanding) has been limited by simplistic measurement tools that fail to capture the complexity of the construct. This study describes the initial development of a measure of prognostic understanding: the Prognostic Understanding Perceptions Scale (PUPS) for use in patients with advanced cancer. Method: An initial pool of 16 candidate items were developed through semi-structured interviews with 15 experts (oncology, psycho-oncology and palliative care professionals) and 30 advanced cancer patients. We investigated the dimensionality, internal item structure, item difficulty and item discrimination of the item pool using exploratory factor analysis (EFA), classical test theory (CTT) and item response theory (IRT) analyses. Convergent and divergent validity were based on correlations between PUPS, terminal illness acknowledgement, and self-report measures of depression, anxiety, hopelessness, and death acceptance. Results: The final measure was comprised of nine items encompassing three factors (perceived curability, illness trajectory, treatment options), yielding strong psychometric properties. Conclusion: These results provide preliminarily support for PUPS as a multifaceted measure of prognostic understanding developed for use in patients with advanced cancer. Preliminary findings also highlight the potential utility of the PUPS for clinical settings, as a means of enhancing communication between patients and physicians. © 2022 John Wiley & Sons Ltd.

Integrity signals

Registry

Crossref · 10.1002/pon.6007

Cites

23 of 23 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

6 of 10 cited sources checked · 4 supported · 0 flagged · accuracy not yet measured

  • Premisecitation

    Most studies of prognostic understanding simply asked terminal illness patients whether they perceived the illness as terminal or curable, or whether the treatment goal was palliative or curative.

    “Applebaum and colleagues found that most studies simply asked patients with terminal illness whether they perceived the illness to be terminal or curable, or if the goal of treatment was palliative or curative.2”
    Quote in the paperSubstantial claim1 of 1 sources checked
    • cites [2] source

      The Results (Structured measurement of PA; page unavailable) describe six studies that used understanding of palliative versus curative treatment as a measure, along with studies assessing perceived curability. But the Discussion (page unavailable) reports substantial variation across the 37 studies, including measures of life expectancy, and the Results include patients at earlier disease stages and assessments made by clinicians. The review therefore supports the kinds of questions described, not the claim that most studies simply asked terminally ill patients those questions. (LLM, conf=0.84)

      Experimental — accuracy not yet measured
  • Premisecitation

    The relationship between prognostic understanding and engagement in advance care planning exists.

    “Particularly given the relationship between prognostic understanding and engagement in advance care planning,22”
    Quote in the paperSubstantial claim1 of 1 sources checked
  • Premisecitation

    This finding is consistent with research demonstrating that stage IV cancer patients in a psychotherapy trial who perceived their cancer as unlikely curable or incurable had less death acceptance than those who perceived the cancer as curable or likely curable.

    “This finding is consistent with research demonstrating that patients with stage IV cancer participating in a psychotherapy research trial who perceived their cancer as unlikely curable or incurable had less death acceptance than those who perceived the cancer as curable or likely curable.19”
    Quote in the paperNot a substantial claim1 of 1 sources checked
  • Findingown data

    Item difficulties and item characteristic curves suggested reducing the 5-point scale items to a 3-point scale with negligible loss of information.

    “Item difficulties and item characteristic curves suggested reducing the 5-point scale items to a 3-point scale with negligible loss of information (Supplemental Figure 3).”
    Quote in the paperNot a substantial claim
  • Findingown data

    No significant association was observed between PUPS total scores and HADS total score (r=.15, p=.15).

    “Although no significant association was observed between total scores on the PUPS and the HADS total score, r=.15, p=.15, a significant association between was observed with the Illness Trajectory factor, r=.27, p=.004; no significant correlation was found between the PUPS total or factor scores with a”
    Quote in the paperNot a substantial claim
  • May combine two claims. 22
  • Classified as probably not a substantial claim. 19

  • May combine two claims.

    Premisecitation

    Each element of prognostic understanding exists along a continuum, and an individual may be more or less accurate depending on cancer stage.

    “Furthermore, each element exists along a continuum; an individual may be more or less accurate in their understanding of any domain depending on their cancer stage.”
    Quote in the paperSubstantial claim1 of 1 sources checked
    • cites [3] source

      The Results (Prognostic Understanding) and Discussion identify distinct elements of prognostic understanding and discuss patients having inaccurate expectations about some of them. They do not say that each element lies on a continuum or that accuracy varies depending on cancer stage. (LLM, conf=0.83)

      Experimental — accuracy not yet measured

  • Classified as probably not a substantial claim.

    Premisecitation

    A qualitative study identified multiple components of prognosis: current disease state and likely curability, availability of treatment options, anticipated life expectancy, and likely trajectory of symptoms and/or functioning.

    “A recent qualitative study identified multiple components encompassed by the term prognosis, all of which form a patient’s prognostic understanding more generally.3 These domains include the current disease state and its likely curability, the availability of treatment options, anticipated life expectancy, and the likely trajectory of symptoms and/or functioning (i.e., deterioration).”
    Quote in the paperSubstantial claim1 of 1 sources checked

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Previous research corroborates the correlation between hopelessness and perceived curability in stage IV cancer patients.

    “Previous research also corroborates the correlation between hopelessness and perceived curability in a sample of stage IV cancer patients.19”
    Quote in the paperNot a substantial claim1 of 1 sources checked

  • May combine two claims.

    Findingown data

    Test information for Factor 1 peaked at factor score ~0.5; Factor 2 had two peaks at ~0 and 2.3; Factor 3 was relatively flat, peaking at ~0.8.

    “The test information for Factor 1 peaked when the factor score was approximately 0.5; Factor 2 had two peaks, at approximately 0 and 2.3 and Factor 3 was relatively flat, reaching its peak when the factor score was approximately 0.8.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The model with collapsed 3-point scales had equivocal fit: decreased AIC and BIC but higher RMSEA and lower CFI (AIC=3006.92, BIC=3111.49, RMSEA=.052, CFI=.949).

    “The model fit statistics with collapsed 3-point scales were equivocal, as decreased AIC and BIC statistics suggested that the new model better fit the data than the previous model despite higher RMSEA and lower CFI in the new model (AIC=3006.92, BIC=3111.49, RMSEA=.052, CFI=.949).”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Items 8, 11, and 13 had low item-total correlations (r = −.02, .17, and .15) and flat item information curves across factor 3.

    “These items also had low item-total correlations (r = −.02, .17, and .15) and item information curves that were flat across the values of factor 3 (Supplemental Figure 1), indicating that the probability of endorsing the item was insensitive to the respondent’s true perception.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    The average inter-item correlation was .20, with three items below r=.15.

    “The average inter-item correlation was .20 (Supplemental Table 1) with three items below r=.15.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    In the collapsed 3-point model, all items had loadings between .48 and .89 and discrimination parameters larger than 1.0.

    “All items had loadings between .48 to .89 and discrimination parameters larger than 1.0.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    The three PUPS factors were positively correlated with TIA: Perceived Curability r=.41, Treatment Options r=.31, Illness Trajectory r=.44 (all ps < .001).

    “Total PUPS scores were positively correlated with TIA, r=.45, p < .001, as were the three PUPS factors, Perceived Curability r=.41, Treatment Options r=.31, and Illness Trajectory r=.44 (all ps < .001).”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Ten PUPS items were significantly associated with cancer stage, with Stage IV participants rating items as indicating a more negative prognosis than Stage I/II or Stage III participants.

    “Ten items were significantly associated with cancer stage, indicating that participants with Stage IV disease rated the items as indicative of a more negative prognosis than those with Stage I/II or Stage III disease.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    In the third model, all item discrimination parameters were satisfactory except item 15, which had discrimination < 1.0.

    “All item discrimination parameters were satisfactory except item 15, which had item discrimination < 1.0.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    A 3-factor model provided the best fit to the data, generating a good model fit.

    “Our analysis of the 16-item pool found that a 3-factor model provided the best fit to the data, generating a good model fit.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Item 8 was uncorrelated with total score (r=−.02) and increased α to .80 if deleted.

    “Item-total correlations indicated item 8 was uncorrelated with total score (r=−.02) and increased α to .80 if deleted.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Findingown data

    The 2-, 3-, and 4-factor models explained 30.2%, 34.1%, and 37.2% of the variance, respectively.

    “The 2-, 3-, 4-factor models explained 30.2%, 34.1%, and 37.2% of the variance, respectively.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    The 4-factor model had many double-loaded items and the 2-factor model had two items with loadings below .32.

    “However, the 4-factor model had many double-loaded items and the 2-factor model had two items with loadings below .32.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    In the second model, all but one item had discrimination parameters exceeding 1.0; item 15 had lower discrimination (0.69) but was retained due to unique content.

    “In this model, all but one item had discrimination parameters exceeding 1.0; item 15 had lower discrimination (0.69) but was retained due to its unique and important item content.”
    Quote in the paperSubstantial claim

  • May combine two claims.

    Findingown data

    Items 8, 11, and 13 had low factor loadings and low item differentiation on factor 3.

    “Consistent with EFA, items 8, 11 and 13 had low factor loadings and low item differentiation on factor 3.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S2 (checkable).

    Interpretationreasoning

    By helping clinicians identify gaps in patients' understanding, the PUPS can provide an opportunity to enhance dialog between patient and health care providers about illness and prognosis.

    “Perhaps most importantly, by helping clinicians identify gaps in their patients’ understanding, the PUPS can provide an opportunity to enhance the dialog between patient and health care providers about important issues related to the illness and its prognosis.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable).

    Study design and conductreasoning

    The nine-item measure places relatively little burden on patients.

    “Further, this brief measure (nine items) places relatively little burden on patients, which is particularly important given its presumptive use with seriously ill patients.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    The language used in PUPS items may have been confusing for some participants, but patients who reviewed the initial draft raised no such concerns and study personnel rarely received requests for clarification.

    “The language used in the PUPS items may have also been confusing for some participants, however patients who reviewed the initial draft questionnaire raised no such concerns and study personnel rarely received requests for term clarification during the court of the study.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    The study was approved by the Institutional Review Boards of Memorial Sloan Kettering Cancer Center.

    “The study was approved by the Institutional Review Boards of Memorial Sloan Kettering Cancer Center (protocol numbers i14-BR–151 and 16–316, respectively).”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    Participants who completed the full study battery were recruited from outpatient oncology clinics at a state-of-the-art cancer treatment center.

    “Additionally, participants who completed the full study battery were recruited from the outpatient oncology clinics at a state-of-the-art cancer treatment center.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Early research on prognostic understanding using a single-item rating found that patients with more depressive symptoms were more likely to deny or minimize the severity of a terminal illness.

    “Early research on prognostic understanding using a single-item rating of prognostic awareness based on a semi-structured interview found that patients with more depressive symptoms were more likely to deny or minimize the severity of a terminal illness.20”
    Quote in the paperNot a substantial claim0 of 1 sources checked
    • cites [20] source

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductreasoning

    Reliance on a voluntary sample may have under-represented individuals who found the subject matter distressing, potentially injecting bias.

    “The reliance on a voluntary sample, while obviously unavoidable, may have also under-represented individuals who found the subject matter distressing, potentially injecting a source of bias into the study results.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Study design and conductown data

    Both the qualitative study and the present analyses involved diverse samples, with oversampling of immigrant and traditionally underserved populations to maximize generalizability.

    “Moreover, both the qualitative study and the present analyses involved diverse samples, as we purposely oversampled immigrant and traditionally underserved populations (including monolingual Spanish speakers) to maximize the generalizability of the PUPS.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductnone given

    The applicability of PUPS to other serious or life-limiting illnesses is not known.

    “Finally, while the PUPS was developed for use with cancer patients, its applicability to other serious or life-limiting illnesses is not known.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Study design and conductown data

    Many participants from the case management program did not provide disease stage, and because they were not necessarily receiving cancer care at the study institution, medical records could not be cross-referenced.

    “Additionally, many participants from the case management program did not provide their disease stage, and were not necessarily receiving their cancer care at the study institution, we could not cross-reference medical records to obtain this information.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductnone given

    The study used a professional service to translate the draft measure into Spanish and back-translate it to English, with discrepancies resolved by a bilingual clinical psychologist.

    “We used a professional service to translate the draft measure into Spanish and back-translate it to English, with discrepancies resolved by a bilingual clinical psychologist with extensive experience in psycho-oncology.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Study design and conductown data

    The sample comprised 281 adults with cancer, with 9 excluded for omitting items, resulting in 272 analyzed.

    “The sample was comprised of 281 adults with cancer (155 hospital outpatients and 126 from the case management program) who were invited to participate in a study inquiring about “how patients understand their disease.” Nine individuals omitted all or most questionnaire items and were excluded from all analyses, resulting in a sample of 272”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductown data

    There is an absence of data utilizing only the final nine items with three response options.

    “There are also limitations in the study, beginning with the absence of data that utilized only the final nine items with three response options.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim.

    Study design and conductreasoning

    Recruitment was halted by the Covid-19 pandemic, so a second sample utilizing the final instrument could not be collected.

    “Because recruitment was halted by the Covid-19 pandemic, we could not collect a second sample utilizing the final instrument.”
    Quote in the paperSubstantial claim

  • Classified as probably not a substantial claim.

    Study design and conductown data

    The study utilized EFA and IRT analyses to compare models and item formats to identify the best-fitting model and items.

    “We also utilized EFA and IRT analyses to compare models and item formats to identify the model and items that best fit the data.”
    Quote in the paperSubstantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Study design and conductreasoning

    The study excluded prospective participants with severe cognitive impairment that impaired ability to consent or complete questionnaires.

    “Prospective participants were excluded if they exhibited severe cognitive impairment that, in the opinion of study personnel, impaired the participant’s ability to give informed consent or complete study questionnaires.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationreasoning

    Significant associations with demographic variables such as education may have emerged in more diverse samples, as the sample was more highly educated than a typical medical population.

    “Significant associations with demographic variables such as education may also have emerged in more diverse samples, as our sample was more highly educated than a typical medical population.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S3 (load-bearing), S4 (based).

    Interpretationnone given

    Associations with psychological variables such as hopelessness, depression, or anxiety may be stronger in samples drawn from treatment settings with fewer resources or less ability to treat advanced cancer.

    “Associations with psychological variables such as hopelessness, depression, or anxiety may be stronger in samples drawn from treatment settings that have fewer resources or less ability to treat advanced cancer.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.

    Interpretationown data

    The 3-factor model allows for a more detailed and nuanced examination of prognostic understanding and may help illuminate subtle influences on cognitions and decision-making of terminally ill patients.

    “The 3-factor model allows for a more detailed and nuanced examination of this construct and may help illuminate more subtle influences on the cognitions and decision-making processes of terminally ill patients.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Study design and conductreasoning

    The study methodology did not permit collection of additional study variables (TIA, HAI, HADS) from the case management program, resulting in less diversity for the subsample and precluding analysis of racial/ethnic or linguistic differences.

    “Further, our study methodology did not permit collection of additional study variables (e.g., TIA, HAI, HADS) from the case management program, resulting in less diversity for the subsample used in these analyses and precluding an analysis of whether racial/ethnic or linguistic differences impacted the associations between the PUPS and other variables.”
    Quote in the paperNot a substantial claim
37 of 37

  • The paper relies on this without support.

    Little prior research has attempted to develop a multifaceted measure of prognostic understanding.

    “Despite the importance of prognosis in patients with cancer, little research has attempted to develop a multifaceted measure of prognostic understanding.”

  • The paper relies on this without support.

    The construct of prognostic understanding applies to individuals at all disease stages.

    “Although the construct of prognostic understanding applies to individuals at all disease stages, we originally included only hospital outpatients with stage III or IV (i.e., metastatic) disease”

  • The paper relies on this without support.

    There is no reason to expect marked differences in item or scale properties between the final nine-item, three-response-option scale and the instrument used to establish convergent and discriminant validity.

    “Although there is no reason to expect marked differences in item or scale properties (e.g., the 3-factor model), additional research is needed to further explore the psychometric properties of the PUPS.”
3 of 3

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

Each contradiction between two passages listed here was confirmed by an independent check.

  • Education counts do not sum to the stated sample

    Major

    The education category counts add to 227, but the text says the sample size was 272. That leaves 45 participants unaccounted for within the listed education categories, so the reported percentages/counts are internally inconsistent.

    Reported 272 · recomputed 227

  • Reported percentage for Stage IV does not match the count under the stated denominator

    Minor

    If calculated from the full sample of 272, 125 participants correspond to 45.9%, not 59.6%. As written, the percentage is inconsistent with the stated overall sample size.

    Reported 59.6 · recomputed 45.955882

  • College-degree percentage does not match its count

    Minor

    The reported 64 participants represent 23.53% of the analyzed sample of 272, not 38.1%.

    Reported 38.1 · recomputed 23.529412

  • Reported high-school percentage uses the wrong sample size

    Minor

    Among the 272 analyzed participants, 106 is 38.97%, not 37.7%. The reported percentage instead matches the 281 people initially invited.

    Reported 37.7 · recomputed 38.970588

  • Graduate-degree percentage uses the wrong sample size

    Minor

    Among 272 analyzed participants, 57 is 20.96%, not 20.3%. The reported percentage instead matches the 281 people initially invited.

    Reported 20.3 · recomputed 20.955882

  • Item 15 falls outside every stated discrimination category

    Minor

    The paper assigns all items to categories ranging from moderate through very high discrimination, but its reported value of 0.69 for item 15 falls in the gap between the stated moderate and high ranges.

6 of 6

Cites

Flagged first, then by citations

1 of the 24 references couldn’t be matched to a known paper.

Cited by

Sorted by citations

Related

Authors
Rosenfeld, B., Walsh, L. E., Zhu, D., Cham, H., Polacek, L. C., Duva, M. M., & Applebaum, A. J.
Affiliations
  • Memorial Sloan Kettering Cancer Center (US)
  • Fordham University (US)
Corresponding author
Rosenfeld, Barry
ORCID
Venue
Psycho-Oncology
Publisher
Wiley
Published
2022-08-19
Volume
31
Issue
10
Pages
1790-1798
ISSN
  • 1057-9249 (ISSN-L)
  • 1099-1611
DOI
10.1002/pon.6007
PMC
PMC9547961
OpenAlex
W4291006452
Semantic Scholar
a244b42310e6b75bc713dcb3e12df09b61a37cd9
Cited by
7
References
24
Citations by year
2026: 2 · 2024: 3 · 2023: 2
FWCI
1.10
Type
journal article
Language
en
Open access
Licence
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
Locations
  • Psycho-Oncology (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • National Institutes of Health
  • National Cancer Institute (R21 CA186932, T32 CA009461, P30 CA008748)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
Keywords
prognostic understanding, advanced cancer, scale development, psychometric properties, illness trajectory, treatment options, death acceptance, patient-physician communication, palliative care
MeSH terms
Factor Analysis, Statistical, Humans, Neoplasms, Palliative Care, Psychometrics, Quality of Life, Surveys and Questionnaires, Reproducibility of Results

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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

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