The most frequently applied phase in the clinic questions was Phase 4 Health Maintenance and Prevention, questions. This was followed by Phases 5 and 3, then Phases 2 and 1. The most frequently applied phase in the crowdsourced questions was Phase 3 Onset of T2DM, questions followed by Phases 4 and 5, then Phases 2 and 1. Phase assignment numbers for clinic and crowdsourced questions are shown in Fig 1.
Our descriptive analysis identified four themes to pursue in future studies: 1 the specificity found in questions; 2 questions revealing the emotion behind an information need; 3 questions disclosing information needs not yet recognized in standard patient information resources; and 4 the potential for questions to identify specific constituent groups with their own information needs.
Questions encourage specificity. The first concerns a worst outcome, the second the inevitability of a treatment, and the third a best outcome. Numerous questions contemplated a decline in health, for example:. Prognosis questions that were about a possible cure for diabetes were prominent.
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A smaller number specifically referred to diet or lifestyle changes, something an individual can do to affect the course of diabetes. Those asking such questions may be more receptive to taking action on their own behalf. Consider the following two questions, both ostensibly seeking to understand why the questioner has diabetes. The first question shows some understanding of risk factors for the condition without, it seems, fully understanding genetic risks.
Puzzlement and frustration are expressed. The second question is less a plea for information and more an expression of frustration and defeat. It is crucial that information on diabetes covers not only what health professionals consider important for people to know but also what the different constituent groups want to know, whether considered important to health professionals or not.
Directly solicited, open-ended invitations to ask questions are a way to reveal information needs that may not be anticipated by health educators. Take the following questions that in effect ask for a severity index for diabetes. This topic is covered in the literature [ 78 ] but not prominently or not at all in the trusted and vetted sources of patient-oriented diabetes information resources. Diabetes information is important not only for people with diabetes but also friends and family of people diagnosed with diabetes and for caregivers, those family members, neighbors, friends or paid persons who regularly look after someone with diabetes.
Our corpora included several such questions. For other chronic conditions such as mental-health disorders, for instance, the role of family and friends is broadly acknowledged and discussed in education and information resources. Question collection on a massive scale may suggest a more prominent place for this topic in diabetes education. The topics associated with the clinic questions Own Health Record Related, Disease Complications, Treatment, and Psychosocial confirm what might be expected, namely that patients whose condition is actively being managed are most concerned about complications of the condition specific to their medical history, with a primary concern being about psychosocial matters related to their disease.
T2DM is a complex condition that has different disease progressions for different people and for the same person over time and as life circumstances change [ 69 ]. Significant effort has to go into making sense of the experience. The stronger representation of Psychosocial questions from men warrants further investigation. Gender-based notions of masculinity have been shown for some people to be in conflict with effective self-management of T2DM, a central component in the treatment of diabetes [ 81 ].
The stronger representation of questions on Weight from women is perhaps not unexpected, but with recent research showing that men are developing T2DM at lower levels of adiposity than women, this may change [ 82 ]. The clinic questions, not surprisingly, predominantly concerned post-diagnosis issues whereas the onset of diabetes dominated crowdsourced questions. The number of crowdsourced questions asking, in effect, how you know if you have diabetes accounts for the high number of questions categorized under Onset of T2DM.
Such a concern is consistent with the fact that over 30 percent of those with diabetes in the United States are unaware they have the disease [ 13 ]. It also perhaps indicates that the public health message about the prevalence of diabetes is being heard and people are wondering about their own health status. There is a long and extensive record of questions being collected from health professionals and analyzed.
Questions have been collected at the point of care, from email consultation with specialists, and through queries to information systems [ 26 , 31 , 33 , 35 — 38 ]. Clinical questions have been categorized as to the kind of knowledge they sought and the kind of answers they needed, with taxonomic and other organizing structures proposed for them [ 24 , 27 , 35 , 37 ]. The questions of family-medicine, elder-care, and rural-health physicians have been explored [ 25 , 29 , 30 , 32 , 34 , 44 ]. Experiments have been done on different ways of capturing clinical questions through voice and other input media [ 28 , 39 — 43 ].
Clinical questions associated with specific disorders have been evaluated, most notably cancer [ 42 ], and T2DM [ 31 ]. Studies of questions from healthcare consumers are relatively recent. In [ 46 ] and [ 47 ] a manual topic-based analyses of consumer questions was done using topics from the UMLS. In [ 49 ], questions from a mailing list were analyzed in terms of topics and the type of question. In [ 50 ] and [ 51 ] smaller question collections 72 and 12 were subjected to detailed semantic, attitudinal or linguistic analysis. An increasing number of studies concern the development of question—answering technology for consumer health questions [ 83 — 87 ].
Patients have different information needs about T2DM at different points as their disease progresses. However little is known about these needs and how they change over time or across varying health or life circumstances [ 77 ]—even though there has been a significant amount of research on what the different phases of T2DM are [ 58 — 67 ]. It is in cancer care that the needs of patients at different stages of their disease have been most thoroughly studied [ 88 — 91 ]. It is important that we develop a similar understanding of the changing needs of people with T2DM.
The urgent need for resources allowing patients with T2DM to find answers to their questions has recently been documented [ 52 ]. One longer-term goal of this study is to develop a question-answer system, informed by the analysis of a very large number of questions and vetted answers and based on the automated identification of topics in questions. The twenty-three categories we devised for this study will almost certainly need further refinement, with a hierarchy of topics or an ontology possibly providing a better representation.
In addition, answer topics as well as question topics need to be defined. Is this related to my diabetes?
The first relates to temporary changes in eyesight when blood glucose fluctuates. The second concerns a side effect of the drug pioglitazone. The third is about diabetic retinopathy that leads to blindness. And the fourth concerns normal age-related changes in eyesight. Finer-grained characteristics that are important in the management of diabetes are also needed. For example, the capacity of a person to act in any given environment known as agency seems to be expressed differentially in our questions [ 92 ].
In our follow-up studies when new questions are collected from patients, we will be labeling each question by the stage the questioner is in relative to his or her own disease progression. In this way a record of the questions asked in the aggregate by patients at each phase of the disease can be compiled along with the progression of questions for each patient individually, providing a broader and deeper perspective on the complex needs of those affected by or at risk of T2DM.
Reversal of type 2 diabetes by bariatric surgery
Browse Subject Areas? Click through the PLOS taxonomy to find articles in your field. Abstract This study set out to analyze questions about type 2 diabetes mellitus T2DM from patients and the public. Introduction Diabetes is a major health problem worldwide.
Methods Ethics statement This study makes secondary use of anonymized data. Question collection As part of a prior service evaluation, all patients attending the weekly diabetes outpatient clinic at the Ulster Hospital in Northern Ireland during February to April, had been invited to submit questions by responding to the following: What are the one or two most pressing questions about your diabetes that you would like answered?
Categorization by topic and phase Question content was determined through fine-grained manual categorization of the topics and the phases of diabetes progression the question referred to. Statistical analysis The following analyses were performed for topics and stratified by sex for the crowdsourced questions. Descriptive analysis In addition to topic analysis and the analysis by phase of disease progression, the combined corpus of questions was reviewed from a holistic and descriptive perspective to ascertain any inferences implicit in the questions that might reveal underlying concerns or issues for the person generating the question.
Download: PPT. The questions One hundred and sixty-four questions were collected from patients during 12 outpatient clinics. Topics and the clinic and crowdsourced questions The clinic questions had an average of 2. Table 2. Topics assigned to the crowdsourced and clinic questions.
Phases and the clinic and crowdsourced questions There were significantly more crowdsourced questions that concerned Phase 1, the time Prior to any Diagnosis CI: [ Table 4. Phases assigned to the crowdsourced and clinic questions.
Type 1 and Type 2 Diabetes
Descriptive analysis Our descriptive analysis identified four themes to pursue in future studies: 1 the specificity found in questions; 2 questions revealing the emotion behind an information need; 3 questions disclosing information needs not yet recognized in standard patient information resources; and 4 the potential for questions to identify specific constituent groups with their own information needs. Will all Type 2 eventually go on to insulin? Is there any potential for a cure within the next few years, according to current research? Numerous questions contemplated a decline in health, for example: Will it get worse [?
How on earth I ever got diabetes in the first place. Never over weight blood pressure always fine never eat sweet food [? Are there variations in severity to diabetes and what determines severity? To what extent does it exist on a spectrum, such that people may be classified according to the degree to which they are diabetic, even if they are not diagnosable as diabetic according to present criteria?
What are some ways to help a family member accept a diagnosis of diabetes?
Types 1 and 2 diabetes: Similarities and differences
How hard is it to treat when the person who needs help isn't very receptive to their condition? What are some things you can do to help a family member better manage an appropriate diet for type 2 diabetes? What is the best way I can help my friends and family members with controlling their diabetes? Discussion Principal results The topics associated with the clinic questions Own Health Record Related, Disease Complications, Treatment, and Psychosocial confirm what might be expected, namely that patients whose condition is actively being managed are most concerned about complications of the condition specific to their medical history, with a primary concern being about psychosocial matters related to their disease.
Related studies There is a long and extensive record of questions being collected from health professionals and analyzed.