Exploring Patient Information Needs in Type 2 Diabetes: A Cross Sectional Study of Questions

Colleen Crangle, Colin Bradley, Paul Carlin, Paul Esterhay, Roy Harper, Patricia Kearney, Vera McCarthy, Mike Mc Tear, Eileen Savage, J. G. Wallace, Mark Tuttle

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Abstract

This study set out to analyze questions about type 2 diabetes mellitus (T2DM) from patients and the public. The aim was to better understand people’s information needs by starting with what they do not know, discovered through their own questions, rather than starting with what we know about T2DM and subsequently finding ways to communicate that information to people affected by or at risk of the disease. One hundred and sixty-four questions were collected from 120 patients attending outpatient diabetes clinics and 300 questions from 100 members of the public through the Amazon Mechanical Turk crowdsourcing platform. Twenty-three general and diabetes-specific topics and five phases of disease progression were identified; these were used to manually categorize the questions. Analyses were performed to determine which topics, if any, were significant predictors of a question’s being asked by a patient or the public, and similarly for questions from a woman or a man. Further analysis identified the individual topics that were assigned significantly more often to the crowdsourced or clinic questions. These were CAUSES (CI: [-0.07, -0.03], p < .001), RISK FACTORS ([-0.08, -0.03], p < .001), PREVENTION ([-0.06, -0.02], p < .001), DIAGNOSIS ([-0.05, -0.02], p < .001), and DISTRIBUTION OF A DISEASE IN A POPULATION ([-0.05 ,-0.01], p = .0016) for the crowdsourced questions and TREATMENT ([0.03, 0.01], p = .0019), DISEASE COMPLICATIONS ([0.02, 0.07], p < .001), and PSYCHOSOCIAL ([0.05, 0.1], p < .001) for the clinic questions. No highly significant gender-specific topics emerged in our study, but questions about WEIGHT were more likely to come from women and PSYCHOSOCIAL questions from men. There were significantly more crowdsourced questions about the time PRIOR TO ANY DIAGNOSIS ([(-0.11, -0.04], p = .0013) and significantly more clinic questions about HEALTH MAINTENANCE AND PREVENTION after diagnosis ([0.07. 0.17], p < .001). A descriptive analysis pointed to the value provided by the specificity of questions, their potential to disclose emotions behind questions, and the as-yet unrecognized information needs they can reveal. Large-scale collection of questions from patients across the spectrum of T2DM progression and from the public – a significant percentage of whom are likely to be as yet undiagnosed – is expected to yield further valuable insights
LanguageEnglish
JournalPLoS ONE
DOIs
Publication statusPublished - 16 Nov 2018

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Type 2 Diabetes Mellitus
Cross-Sectional Studies
Crowdsourcing
Ambulatory Care Facilities
Disease Progression
Emotions
Health
Population

Cite this

Crangle, C., Bradley, C., Carlin, P., Esterhay, P., Harper, R., Kearney, P., ... Tuttle, M. (2018). Exploring Patient Information Needs in Type 2 Diabetes: A Cross Sectional Study of Questions. PLoS ONE. https://doi.org/10.1371/journal.pone.0203429
Crangle, Colleen ; Bradley, Colin ; Carlin, Paul ; Esterhay, Paul ; Harper, Roy ; Kearney, Patricia ; McCarthy, Vera ; Mc Tear, Mike ; Savage, Eileen ; Wallace, J. G. ; Tuttle, Mark . / Exploring Patient Information Needs in Type 2 Diabetes: A Cross Sectional Study of Questions. In: PLoS ONE. 2018.
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abstract = "This study set out to analyze questions about type 2 diabetes mellitus (T2DM) from patients and the public. The aim was to better understand people’s information needs by starting with what they do not know, discovered through their own questions, rather than starting with what we know about T2DM and subsequently finding ways to communicate that information to people affected by or at risk of the disease. One hundred and sixty-four questions were collected from 120 patients attending outpatient diabetes clinics and 300 questions from 100 members of the public through the Amazon Mechanical Turk crowdsourcing platform. Twenty-three general and diabetes-specific topics and five phases of disease progression were identified; these were used to manually categorize the questions. Analyses were performed to determine which topics, if any, were significant predictors of a question’s being asked by a patient or the public, and similarly for questions from a woman or a man. Further analysis identified the individual topics that were assigned significantly more often to the crowdsourced or clinic questions. These were CAUSES (CI: [-0.07, -0.03], p < .001), RISK FACTORS ([-0.08, -0.03], p < .001), PREVENTION ([-0.06, -0.02], p < .001), DIAGNOSIS ([-0.05, -0.02], p < .001), and DISTRIBUTION OF A DISEASE IN A POPULATION ([-0.05 ,-0.01], p = .0016) for the crowdsourced questions and TREATMENT ([0.03, 0.01], p = .0019), DISEASE COMPLICATIONS ([0.02, 0.07], p < .001), and PSYCHOSOCIAL ([0.05, 0.1], p < .001) for the clinic questions. No highly significant gender-specific topics emerged in our study, but questions about WEIGHT were more likely to come from women and PSYCHOSOCIAL questions from men. There were significantly more crowdsourced questions about the time PRIOR TO ANY DIAGNOSIS ([(-0.11, -0.04], p = .0013) and significantly more clinic questions about HEALTH MAINTENANCE AND PREVENTION after diagnosis ([0.07. 0.17], p < .001). A descriptive analysis pointed to the value provided by the specificity of questions, their potential to disclose emotions behind questions, and the as-yet unrecognized information needs they can reveal. Large-scale collection of questions from patients across the spectrum of T2DM progression and from the public – a significant percentage of whom are likely to be as yet undiagnosed – is expected to yield further valuable insights",
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Crangle, C, Bradley, C, Carlin, P, Esterhay, P, Harper, R, Kearney, P, McCarthy, V, Mc Tear, M, Savage, E, Wallace, JG & Tuttle, M 2018, 'Exploring Patient Information Needs in Type 2 Diabetes: A Cross Sectional Study of Questions', PLoS ONE. https://doi.org/10.1371/journal.pone.0203429

Exploring Patient Information Needs in Type 2 Diabetes: A Cross Sectional Study of Questions. / Crangle, Colleen; Bradley, Colin; Carlin, Paul; Esterhay, Paul; Harper, Roy; Kearney, Patricia; McCarthy, Vera; Mc Tear, Mike; Savage, Eileen; Wallace, J. G.; Tuttle, Mark .

In: PLoS ONE, 16.11.2018.

Research output: Contribution to journalArticle

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T1 - Exploring Patient Information Needs in Type 2 Diabetes: A Cross Sectional Study of Questions

AU - Crangle, Colleen

AU - Bradley, Colin

AU - Carlin, Paul

AU - Esterhay, Paul

AU - Harper, Roy

AU - Kearney, Patricia

AU - McCarthy, Vera

AU - Mc Tear, Mike

AU - Savage, Eileen

AU - Wallace, J. G.

AU - Tuttle, Mark

PY - 2018/11/16

Y1 - 2018/11/16

N2 - This study set out to analyze questions about type 2 diabetes mellitus (T2DM) from patients and the public. The aim was to better understand people’s information needs by starting with what they do not know, discovered through their own questions, rather than starting with what we know about T2DM and subsequently finding ways to communicate that information to people affected by or at risk of the disease. One hundred and sixty-four questions were collected from 120 patients attending outpatient diabetes clinics and 300 questions from 100 members of the public through the Amazon Mechanical Turk crowdsourcing platform. Twenty-three general and diabetes-specific topics and five phases of disease progression were identified; these were used to manually categorize the questions. Analyses were performed to determine which topics, if any, were significant predictors of a question’s being asked by a patient or the public, and similarly for questions from a woman or a man. Further analysis identified the individual topics that were assigned significantly more often to the crowdsourced or clinic questions. These were CAUSES (CI: [-0.07, -0.03], p < .001), RISK FACTORS ([-0.08, -0.03], p < .001), PREVENTION ([-0.06, -0.02], p < .001), DIAGNOSIS ([-0.05, -0.02], p < .001), and DISTRIBUTION OF A DISEASE IN A POPULATION ([-0.05 ,-0.01], p = .0016) for the crowdsourced questions and TREATMENT ([0.03, 0.01], p = .0019), DISEASE COMPLICATIONS ([0.02, 0.07], p < .001), and PSYCHOSOCIAL ([0.05, 0.1], p < .001) for the clinic questions. No highly significant gender-specific topics emerged in our study, but questions about WEIGHT were more likely to come from women and PSYCHOSOCIAL questions from men. There were significantly more crowdsourced questions about the time PRIOR TO ANY DIAGNOSIS ([(-0.11, -0.04], p = .0013) and significantly more clinic questions about HEALTH MAINTENANCE AND PREVENTION after diagnosis ([0.07. 0.17], p < .001). A descriptive analysis pointed to the value provided by the specificity of questions, their potential to disclose emotions behind questions, and the as-yet unrecognized information needs they can reveal. Large-scale collection of questions from patients across the spectrum of T2DM progression and from the public – a significant percentage of whom are likely to be as yet undiagnosed – is expected to yield further valuable insights

AB - This study set out to analyze questions about type 2 diabetes mellitus (T2DM) from patients and the public. The aim was to better understand people’s information needs by starting with what they do not know, discovered through their own questions, rather than starting with what we know about T2DM and subsequently finding ways to communicate that information to people affected by or at risk of the disease. One hundred and sixty-four questions were collected from 120 patients attending outpatient diabetes clinics and 300 questions from 100 members of the public through the Amazon Mechanical Turk crowdsourcing platform. Twenty-three general and diabetes-specific topics and five phases of disease progression were identified; these were used to manually categorize the questions. Analyses were performed to determine which topics, if any, were significant predictors of a question’s being asked by a patient or the public, and similarly for questions from a woman or a man. Further analysis identified the individual topics that were assigned significantly more often to the crowdsourced or clinic questions. These were CAUSES (CI: [-0.07, -0.03], p < .001), RISK FACTORS ([-0.08, -0.03], p < .001), PREVENTION ([-0.06, -0.02], p < .001), DIAGNOSIS ([-0.05, -0.02], p < .001), and DISTRIBUTION OF A DISEASE IN A POPULATION ([-0.05 ,-0.01], p = .0016) for the crowdsourced questions and TREATMENT ([0.03, 0.01], p = .0019), DISEASE COMPLICATIONS ([0.02, 0.07], p < .001), and PSYCHOSOCIAL ([0.05, 0.1], p < .001) for the clinic questions. No highly significant gender-specific topics emerged in our study, but questions about WEIGHT were more likely to come from women and PSYCHOSOCIAL questions from men. There were significantly more crowdsourced questions about the time PRIOR TO ANY DIAGNOSIS ([(-0.11, -0.04], p = .0013) and significantly more clinic questions about HEALTH MAINTENANCE AND PREVENTION after diagnosis ([0.07. 0.17], p < .001). A descriptive analysis pointed to the value provided by the specificity of questions, their potential to disclose emotions behind questions, and the as-yet unrecognized information needs they can reveal. Large-scale collection of questions from patients across the spectrum of T2DM progression and from the public – a significant percentage of whom are likely to be as yet undiagnosed – is expected to yield further valuable insights

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