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1.
Gastroenterology ; 163(4): 995-1023.e3, 2022 10.
Article in English | MEDLINE | ID: mdl-35716771

ABSTRACT

BACKGROUND & AIMS: Many studies have assessed risk factors of irritable bowel syndrome (IBS) and other abdominal pain-related disorders of gut-brain interaction (AP-DGBI); however, the role of these factors is unclear due to heterogeneous study designs. The aim of this systematic review was to extensively evaluate the literature and determine clinical risk and protective factors for the presence and persistence of AP-DGBI in children and adults. METHODS: A PubMed search identified studies investigating potential risk and protective factors for AP-DGBI in adults and children. Inclusion criteria included fully published studies with a control group; exclusion criteria included poor-quality studies (using a validated scale). For each factor, the proportion of studies that found the factor to be a risk factor, protective factor, or neither was summarized. The number of studies, diagnostic criteria, number of subjects, and average study quality rating provided further context. Whenever possible, a meta-analysis generated pooled odds ratios or mean difference. RESULTS: The systematic review included 348 studies. Female sex, gastroenteritis, abuse, stress, psychological disorders, somatic symptoms, and poor sleep were consistent risk factors for developing AP-DGBI in adults and children. In adults, additional risk factors included obesity, smoking, and increased use of medical resources. Protective AP-DGBI factors in adults included social support and optimism; no studies for protective factors were found for children. CONCLUSIONS: There are multiple risk factors for AP-DGBI in adults and children. These include female sex, gastroenteritis, abuse, stress, poor sleep, obesity, psychological disorders, and somatic symptoms. Additional studies are needed in children, on protective factors, and on factors associated with persistence of AP-DGBI.


Subject(s)
Gastroenteritis , Gastrointestinal Diseases , Irritable Bowel Syndrome , Medically Unexplained Symptoms , Abdominal Pain/epidemiology , Abdominal Pain/etiology , Adult , Brain , Child , Female , Gastroenteritis/complications , Gastrointestinal Diseases/diagnosis , Gastrointestinal Diseases/epidemiology , Gastrointestinal Diseases/etiology , Humans , Irritable Bowel Syndrome/complications , Obesity/complications , Risk Factors
2.
Article in English | MEDLINE | ID: mdl-35270695

ABSTRACT

Individuals with irritable bowel syndrome (IBS) are more likely to miss work (absenteeism), have reduced work effectiveness (presenteeism) and experience activity impairment. This study compared the effect of a comprehensive self-management (CSM) intervention program (incorporating cognitive behavioral therapy, diet education and relaxation) versus usual care on work- and activity-impairments in adults with IBS. This secondary data analysis used daily diaries and Work Productivity and Activity Impairment in Irritable Bowel Syndrome (WPAI-IBS) questionnaire data collected at baseline, 3, 6 and 12 months post-randomization from 160 adults with IBS. Mixed-effects modeling was used to compare the effect of CSM versus usual care on work- and activity-related outcomes. The effect of CSM was shown to be superior to usual care in improving WPAI-IBS and diary-measured presenteeism, overall work productivity loss and activity impairment with sustained effects up to 12 months post-randomization (all p < 0.05). Moreover, the CSM intervention was found to be particularly beneficial for IBS patients with greater baseline work and activity impairments (all p < 0.05). The CSM intervention may bring benefits to individuals and society through improving symptoms and reducing presenteeism associated with IBS.


Subject(s)
Cognitive Behavioral Therapy , Irritable Bowel Syndrome , Self-Management , Adult , Data Analysis , Humans , Irritable Bowel Syndrome/complications , Presenteeism , Quality of Life
3.
Neurogastroenterol Motil ; 34(8): e14258, 2022 08.
Article in English | MEDLINE | ID: mdl-34693609

ABSTRACT

BACKGROUND: Previous studies show some patients with functional gastrointestinal disorders (disorders of gut-brain interaction) may be at risk for or already have an eating disorder (ED). Avoidant/restrictive food intake disorder (ARFID) (ED not primarily motivated by body shape/weight concerns) may be particularly relevant but previous studies have been unable to fully apply diagnostic criteria. This study aimed to determine the frequency and nature of the full spectrum of ED symptoms, among adults with disorders of gut-brain interaction. METHODS: Adults with disorders of gut-brain interaction (n = 99, 77.1% female, ages 18-82 years) from academic medical center gastroenterology clinics completed a modified ARFID Canadian Paediatric Surveillance Program Questionnaire, the ED Examination Questionnaire (EDE-Q), and other self-report measures of depression, generalized anxiety, and pain interference. KEY RESULTS: Of the 93 participants who completed the measures, 37 (39.8%) had ARFID symptoms and 12 (12.9%) had clinically significant shape/weight-motivated ED symptoms (EDE-Q-Global ≥4.0). Exploratory comparisons among ARFID, shape/weight-motivated ED, and no-ED groups revealed that ARFID symptom presence was associated with lower body mass index (BMI), and shape/weight-motivated ED presence was associated with higher depression, anxiety, and pain interference. However, the majority (86%) of patients with ARFID symptoms had a BMI >18.5 kg/m2 . CONCLUSIONS & INFERENCES: The full spectrum of ED symptoms was frequent among patients with disorders of gut-brain interaction, particularly ARFID symptoms. Further research is needed to understand risk and maintenance factors to inform prevention and intervention efforts.


Subject(s)
Avoidant Restrictive Food Intake Disorder , Feeding and Eating Disorders , Adolescent , Adult , Aged , Aged, 80 and over , Brain , Canada/epidemiology , Child , Eating , Feeding and Eating Disorders/complications , Feeding and Eating Disorders/epidemiology , Female , Humans , Male , Middle Aged , Pain , Retrospective Studies , Young Adult
4.
J Clin Gastroenterol ; 54(2): 175-183, 2020 02.
Article in English | MEDLINE | ID: mdl-30148765

ABSTRACT

INTRODUCTION: Altered microbial diversity has been associated with gastrointestinal (GI) symptoms in persons with irritable bowel syndrome (IBS). Less is known about the relationship of microbiome with extraintestinal pain and psychological distress symptoms and quality of life (QOL) in persons with IBS. We aimed to evaluate the relationship of fecal microbiota to GI symptoms, stool consistency, psychological distress, extraintestinal pain, and QOL in participants meeting Rome III criteria for IBS. METHODS: Seventy-six women completed a 28-day diary that included GI, stool consistency, psychological distress, and extraintestinal pain ratings. Participants completed the IBS-Specific Quality of Life questionnaire. Stool samples were collected and analyzed by 16S rRNA gene sequencing. Principal component analysis was performed and the first 2 components (PC1, PC2) were used to test relationships among bacterial families and clinical measures. RESULTS: Participants were categorized as IBS constipation (n=22), IBS diarrhea (n=39), IBS mixed (n=13), and IBS unsubtyped (n=2). There was a significant group effect for the Firmicutes to Bacteroidetes ratio and PC1. Lower microbial diversity and richness were associated with increased urgency and extraintestinal pain, worse QOL, and looser stools. Lower extraintestinal pain was associated with increased Rikenellaceae, Christensenellaceae, Dehalobabacteriaceae, Oscillospiraceae, Mogibacteriaceae, Ruminococcaceae, Sutterellaceae, Desulfovibrionaceae, and Erysipelotrichaceae abundances. QOL was positively associated with many of these same bacterial families. Higher Firmicutes to Bacteroidetes ratio was positively associated with loose stools. There were no statistically significant relationships between daily psychological distress or abdominal pain and bacterial families. CONCLUSIONS: Stool microbial diversity and composition are linked to daily extraintestinal symptoms, stool consistency, and QOL in women with IBS.


Subject(s)
Irritable Bowel Syndrome , Microbiota , Psychological Distress , Diarrhea , Female , Humans , Quality of Life , RNA, Ribosomal, 16S
6.
Article in English | MEDLINE | ID: mdl-31080941

ABSTRACT

Identifying and planning strategies that support a healthy lifestyle or manage a chronic disease often require patient-provider collaboration. For example, people with healthy eating goals often share everyday food, exercise, or sleep data with health coaches or nutritionists to find opportunities for change, and patients with irritable bowel syndrome (IBS) often gather food and symptom data as part of working with providers to diagnose and manage symptoms. However, a lack of effective support often prevents health experts from reviewing large amounts of data in time-constrained visits, prevents focusing on individual goals, and prevents generating correct, individualized, and actionable recommendations. To examine how to design photo-based diaries to help people and health experts exchange knowledge and focus on collaboration goals when reviewing the data together, we designed and developed Foodprint, a photo-based food diary. Foodprint includes three components: (1) A mobile app supporting lightweight data collection, (2) a web app with photo-based visualization and quantitative visualizations supporting collaborative reflection, and (3) a pre-visit note communicating an individual's expectations and questions to experts. We deployed Foodprint in two studies: (1) with 17 people with healthy eating goals and 7 health experts, and (2) with 16 IBS patients and 8 health experts. Building upon the lens of boundary negotiating artifacts and findings from two field studies, our research contributes design principles to (1) prepare individuals to collect data relevant to their health goals and for collaboration, (2) help health experts focus on an individual's eating context, experiences, and goals in collaborative review, and (3) support individuals and experts to develop individualized, actionable plans and strategies.

7.
Gastroenterol Nurs ; 42(2): 150-158, 2019.
Article in English | MEDLINE | ID: mdl-30946302

ABSTRACT

Patients with irritable bowel syndrome (IBS) suffer from abdominal pain, bloating, and abnormal defecation. Reducing the dietary intake of fermentable oligosaccharides, disaccharides, monosaccharides, and polyols (FODMAPs) has been shown to be beneficial in reducing IBS symptoms. However, diet modification plays an important role in the composition of colonic microbiota. Currently, the effects of a FODMAP diet on the composition of the gut microbiome are not known. We conducted a systematic review to determine (1) the effectiveness of low-FODMAPs diet to reduce symptoms of patients with IBS and (2) the association between a low-FOMAPs diet and the composition of gut microbiome. Four electronic databases were searched using key words "IBS" or "irritable bowel syndrome," and "FODMAP" or "FODMAPs" or "fermentable oligosaccharides, disaccharides, monosaccharides, and polyols," and "microbiome." Two reviewers (H.S. and Y.T.L.) selected and reviewed articles according to our inclusion criteria. A total of 87 articles were reviewed and 7 met inclusion criteria. Based on the systematic review, low FODMAPs appear to reduce gastrointestinal symptoms for a least a subset of patients with IBS. However, due to the heterogeneity of reviewed studies, the influence on patients' gut microbiome composition and/or microbiota metabolites requires additional studies.


Subject(s)
Diet, Carbohydrate-Restricted/methods , Gastrointestinal Microbiome , Irritable Bowel Syndrome/diet therapy , Disaccharides/metabolism , Female , Fermentation/physiology , Humans , Irritable Bowel Syndrome/diagnosis , Male , Monosaccharides/metabolism , Oligosaccharides/metabolism , Polymers/metabolism , Prognosis , Randomized Controlled Trials as Topic , Severity of Illness Index , Treatment Outcome
8.
J Clin Med ; 6(11)2017 Nov 04.
Article in English | MEDLINE | ID: mdl-29113044

ABSTRACT

There are currently no standardized methods for identifying trigger food(s) from irritable bowel syndrome (IBS) food and symptom journals. The primary aim of this study was to assess the inter-rater reliability of providers' interpretations of IBS journals. A second aim was to describe whether these interpretations varied for each patient. Eight providers reviewed 17 IBS journals and rated how likely key food groups (fermentable oligo-di-monosaccharides and polyols, high-calorie, gluten, caffeine, high-fiber) were to trigger IBS symptoms for each patient. Agreement of trigger food ratings was calculated using Krippendorff's α-reliability estimate. Providers were also asked to write down recommendations they would give to each patient. Estimates of agreement of trigger food likelihood ratings were poor (average α = 0.07). Most providers gave similar trigger food likelihood ratings for over half the food groups. Four providers gave the exact same written recommendation(s) (range 3-7) to over half the patients. Inter-rater reliability of provider interpretations of IBS food and symptom journals was poor. Providers favored certain trigger food likelihood ratings and written recommendations. This supports the need for a more standardized method for interpreting these journals and/or more rigorous techniques to accurately identify personalized IBS food triggers.

9.
CSCW Conf Comput Support Coop Work ; 2017: 1726-1739, 2017 02 25.
Article in English | MEDLINE | ID: mdl-28516172

ABSTRACT

Patient-generated data can allow patients and providers to collaboratively develop accurate diagnoses and actionable treatment plans. Unfortunately, patients and providers often lack effective support to make use of such data. We examine patient-provider collaboration to interpret patient-generated data. We focus on irritable bowel syndrome (IBS), a chronic illness in which particular foods can exacerbate symptoms. IBS management often requires patient-provider collaboration using a patient's food and symptom journal to identify the patient's triggers. We contribute interactive visualizations to support exploration of such journals, as well as an examination of patient-provider collaboration in interpreting the journals. Drawing upon individual and collaborative interviews with patients and providers, we find that collaborative review helps improve data comprehension and build mutual trust. We also find a desire to use tools like our interactive visualizations within and beyond clinic appointments. We discuss these findings and present guidance for the design of future tools.

10.
Proc SIGCHI Conf Hum Factor Comput Syst ; 2017: 6850-6863, 2017 May 02.
Article in English | MEDLINE | ID: mdl-28516175

ABSTRACT

Diagnostic self-tracking, the recording of personal information to diagnose or manage a health condition, is a common practice, especially for people with chronic conditions. Unfortunately, many who attempt diagnostic self-tracking have trouble accomplishing their goals. People often lack knowledge and skills needed to design and conduct scientifically rigorous experiments, and current tools provide little support. To address these shortcomings and explore opportunities for diagnostic self-tracking, we designed, developed, and evaluated a mobile app that applies a self-experimentation framework to support patients suffering from irritable bowel syndrome (IBS) in identifying their personal food triggers. TummyTrials aids a person in designing, executing, and analyzing self-experiments to evaluate whether a specific food triggers their symptoms. We examined the feasibility of this approach in a field study with 15 IBS patients, finding that participants could use the tool to reliably undergo a self-experiment. However, we also discovered an underlying tension between scientific validity and the lived experience of self-experimentation. We discuss challenges of applying clinical research methods in everyday life, motivating a need for the design of self-experimentation systems to balance rigor with the uncertainties of everyday life.

11.
Dig Dis Sci ; 62(2): 502-509, 2017 02.
Article in English | MEDLINE | ID: mdl-27933469

ABSTRACT

BACKGROUND: Patients with chronic pancreatitis (CP) have substantially impaired quality of life (QOL) both physically and mentally. Mindfulness therapy is a form of treatment that has been shown to be beneficial in many medical conditions but has not been evaluated in the CP patient population. AIMS: The aims of this study were (1) to test the feasibility and usability of a novel telephone-based mindfulness therapy service for patients with CP and (2) to determine whether there was any effect on CP quality of life. METHODS: We recruited ten patients with suspected or confirmed CP and five controls who were asked to utilize our telephone-based mindfulness therapy service daily for 28 days. Feasibility of the service was defined as the fraction of subjects with a ≥50% compliance rate. Usability was assessed using a System Usability Scale (SUS). QOL was evaluated using the SF-36 questionnaire and the Pancreatitis Quality of Life Instrument (PANQOLI). Paired t tests were used to compare the SF-36 and PANQOLI pre- and post-intervention. RESULTS: There was an overall compliance rate of 67%. The mean SUS score for all participants was 79.3, above the average published score of 68. Results showed a significant improvement in the SF-36 Mental Component Summary scores after 28 days of mindfulness therapy for patients with CP, t(9) = 2.48, p = 0.035. There was also a significant improvement in the mean total PANQOLI scores in CP patients, t(9) = 2.41, p = 0.04, most notably in the social domain. CONCLUSION: Our telephone-based mindfulness therapy service represents a feasible and easily usable treatment adjunct for patients with CP, which may provide benefit in QOL by improving mental health-related domains.


Subject(s)
Mental Health , Mindfulness/methods , Pancreatitis, Chronic/rehabilitation , Quality of Life/psychology , Telephone , Adult , Aged , Case-Control Studies , Feasibility Studies , Female , Humans , Male , Middle Aged , Pancreatitis, Chronic/psychology , Patient Compliance , Surveys and Questionnaires
12.
Gastroenterol Clin North Am ; 45(2): 239-51, 2016 06.
Article in English | MEDLINE | ID: mdl-27261896

ABSTRACT

This article reviews the sex differences in upper gastrointestinal (GI) motility for both healthy and common dysmotility conditions. It focuses on gastroesophageal reflux disease and other esophageal motor disorders for the esophagus and on gastroparesis and accelerated gastric emptying for the stomach. It also describes differences in upper GI motility signs and symptoms during each female hormonal stage (ie, menstrual cycle, pregnancy, perimenopause, menopause) for both healthy participants and those suffering from one of the aforementioned upper GI dysmotility conditions. More research still needs to be conducted to better understand sex differences in upper GI motility.


Subject(s)
Esophageal Motility Disorders/physiopathology , Gastroesophageal Reflux/physiopathology , Gastroparesis/physiopathology , Esophageal Motility Disorders/metabolism , Esophagus/physiology , Estrogens/metabolism , Female , Gastric Emptying/physiology , Gastroesophageal Reflux/metabolism , Gastrointestinal Motility/physiology , Gastroparesis/metabolism , Humans , Male , Progesterone/metabolism , Sex Characteristics , Stomach/physiology
13.
Clin Transl Gastroenterol ; 7: e147, 2016 Mar 03.
Article in English | MEDLINE | ID: mdl-26938478

ABSTRACT

OBJECTIVES: Seventy percent of patients with irritable bowel syndrome (IBS) identify certain foods as triggers for their symptom flare-ups. To help identify potential trigger foods, practitioners often rely on patient food and gastrointestinal (GI) symptom journaling. The aim of the study was to evaluate the feasibility and usability of a novel food and symptom journal app, specifically designed for patients with IBS. Secondary aims were to explore the effect of using the app on GI symptoms and to describe associations between diet and GI symptoms suggested by individual patient data. METHODS: The feasibility and usability of the novel app was studied in 11 IBS patients (8 women), aged 21-65 years. Participants were asked to log GI symptoms (abdominal pain, bloating, diarrhea, constipation) using a 100-point color-graded sliding scale (green=none, red=severe) four times a day and to log every meal/snack they ate (at least three times a day) over a 2-week period. The app's feasibility as a data collection tool was evaluated by daily completion, compliance, data hoarding, and fatigability rates. Usability was evaluated with the System Usability Scale (SUS). To explore potential impact of using the app on bowel distress, we compared before and after intervention IBS-Symptom Severity Scale (IBS-SSS) scores. Meal entries were analyzed for nutrients using the Nutrition Data System for Research. Regression analyses were conducted for each participant journal to explore relationships between meal nutrients and subsequent GI symptoms. RESULTS: Daily average completion rates of the minimum requested entries for meal and GI symptoms were 112±47% and 78±44%, respectively. Average 24-h compliance rates were 90±19% and 94±12%, respectively. The SUS score was above average (mean 83, range 65-97.5; n=10). Most participants did not have a clinically significant decrease in IBS-SSS. At least one strong association (P≤0.05) between GI symptoms and a meal nutrient was found in 73% of participants. The mean number of associations was 2 (range 0-7; n=11). Patterns of associations differed between individual participants. CONCLUSIONS: Our app appeared to be a feasible and usable tool for IBS patients. Our findings are in line with anecdotes that most IBS patients have food triggers and that these vary by individual. Future studies can explore whether individualized dietary changes guided by an app can result in IBS symptom improvement.

14.
Ultrasound Med Biol ; 42(4): 956-63, 2016 Apr.
Article in English | MEDLINE | ID: mdl-26803389

ABSTRACT

Chemotherapeutic drug delivery is often ineffective within solid tumors, but increasing the drug dose would result in systemic toxicity. The use of high-intensity focused ultrasound (HIFU) has the potential to enhance penetration of small molecules. However, operation parameters need to be optimized before the use of chemotherapeutic drugs in vivo and translation to clinical trials. In this study, the effects of pulsed HIFU (pHIFU) parameters (spatial-average pulse-average intensity, duty factor and pulse repetition frequency) on the penetration as well as content of small molecules were evaluated in ex vivo porcine kidneys. Specific HIFU parameters resulted in more than 40 times greater Evans blue content and 3.5 times the penetration depth compared with untreated samples. When selected parameters were applied to porcine kidneys in vivo, a 2.3-fold increase in concentration was obtained after a 2-min exposure to pHIFU. Pulsed HIFU has been found to be an effective modality to enhance both the concentration and penetration depth of small molecules in tissue using the optimized HIFU parameters. Although, performed in normal tissue, this study has the promise of translation into tumor tissue.


Subject(s)
Evans Blue/chemistry , Evans Blue/radiation effects , High-Intensity Focused Ultrasound Ablation/methods , Kidney/chemistry , Kidney/radiation effects , Sonication/methods , Animals , Diffusion/radiation effects , Dose-Response Relationship, Drug , Drug Synergism , High-Energy Shock Waves , In Vitro Techniques , Radiation Dosage , Swine
15.
J Neurogastroenterol Motil ; 22(1): 102-11, 2016 Jan 31.
Article in English | MEDLINE | ID: mdl-26459461

ABSTRACT

BACKGROUND/AIMS: To determine if potential biomarkers can be used to identify subgroups of people with irritable bowel syndrome (IBS) who will benefit the most or the least from a comprehensive self-management (CSM) intervention. METHODS: In a two-armed randomized controlled trial a CSM (n = 46) was compared to a usual care (n = 46) group with follow-up at 3 and 6 months post randomization. Biomarkers obtained at baseline included heart rate variability, salivary cortisol, interleukin-10 produced by unstimulated peripheral blood mononuclear cells, and lactulose/mannitol ratio. Linear mixed models were used to test whether these biomarkers predicted improvements in the primary outcomes including daily abdominal pain, Gastrointestinal Symptom score and IBS-specific quality of life. RESULTS: The nurse-delivered 8-session CSM intervention is more effective than usual care in reducing abdominal pain, reducing Gastrointestinal Symptom score, and enhancing quality of life. Participants with lower nighttime high frequency heart rate variability (vagal modulation) and increased low frequency/high frequency ratio (sympathovagal balance) had less benefit from CSM on abdominal pain. Salivary cortisol, IL-10, and lactulose/mannitol ratio were not statistically significant in predicting CSM benefit. Baseline symptom severity interacts with treatment, namely the benefit of CSM is greater in those with higher baseline symptoms. CONCLUSIONS: Cognitively-focused therapies may be less effective in reducing abdominal pain in IBS patients with higher sympathetic tone. Whether this a centrally-mediated patient characteristic or related to heightened arousal remains to be determined.

16.
Clin Gastroenterol Hepatol ; 14(2): 212-9.e1-2, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26453951

ABSTRACT

BACKGROUND & AIMS: We developed a comprehensive self-management (CSM) program that combines cognitive behavioral therapy with relaxation and dietary strategies; 9 sessions (1 hour each) over 13 weeks were shown to reduce gastrointestinal symptoms and increase quality of life in a randomized trial of patients with irritable bowel syndrome (IBS), compared with usual care. The aims of this study were to describe strategies patients with IBS selected and continued to use, 12 months after the CSM program began. METHODS: We performed a cohort study to continue to follow 81 adults with IBS (87% female; mean age, 45 ± 15 years old) who received the CSM program in the previous clinical trial. During the last CSM session, participants selected strategies they intended to continue using to manage their IBS. CSM strategies were categorized into subthemes of diet (composition, trigger foods, meal size or timing, and eating behaviors), relaxation (specific relaxation strategies and lifestyle behaviors), and alternative thoughts (identifying thought distortions, challenging underlying beliefs, and other strategies). Twelve months later, participants were asked how often they used each strategy (not at all or rarely, occasionally, often, very often, or almost always). RESULTS: At the last CSM session, 95% of the patients selected the subthemes of specific relaxation strategies, 90% selected diet composition, and 90% identified thought distortions for continued use. At 12 months, 94% of the participants (76 of 81) were still using at least 6 strategies, and adherence was greater than 79% for all subthemes. CONCLUSIONS: We developed a CSM program to reduce symptoms and increase quality of life in patients with IBS that produced sustainable behavioral changes in almost all patients (94%) after 1 year of follow-up.


Subject(s)
Behavior , Irritable Bowel Syndrome/pathology , Irritable Bowel Syndrome/therapy , Self Care/methods , Adult , Cohort Studies , Diet/methods , Female , Follow-Up Studies , Humans , Male , Middle Aged , Quality of Life , Relaxation Therapy/methods
17.
J Am Med Inform Assoc ; 23(3): 440-8, 2016 05.
Article in English | MEDLINE | ID: mdl-26644399

ABSTRACT

OBJECTIVE: To describe an interdisciplinary and methodological framework for applying single case study designs to self-experimentation in personalized health. The authors examine the framework's applicability to various health conditions and present an initial case study with irritable bowel syndrome (IBS). METHODS AND MATERIALS: An in-depth literature review was performed to develop the framework and to identify absolute and desired health condition requirements for the application of this framework. The authors developed mobile application prototypes, storyboards, and process flows of the framework using IBS as the case study. The authors conducted three focus groups and an online survey using a human-centered design approach for assessing the framework's feasibility. RESULTS: All 6 focus group participants had a positive view about our framework and volunteered to participate in future studies. Most stated they would trust the results because it was their own data being analyzed. They were most concerned about confounds, nonmeaningful measures, and erroneous assumptions on the timing of trigger effects. Survey respondents (N = 60) were more likely to be adherent to an 8- vs 12-day study length even if it meant lower confidence results. DISCUSSION: Implementation of the self-experimentation framework in a mobile application appears to be feasible for people with IBS. This framework can likely be applied to other health conditions. Considerations include the learning curve for teaching self-experimentation to non-experts and the challenges involved in operationalizing and customizing study designs. CONCLUSION: Using mobile technology to guide people through self-experimentation to investigate health questions is a feasible and promising approach to advancing personalized health.


Subject(s)
Autoexperimentation , Irritable Bowel Syndrome , Mobile Applications , Precision Medicine , Feasibility Studies , Female , Focus Groups , Humans , Male , Surveys and Questionnaires
18.
CSCW Conf Comput Support Coop Work ; 2016: 770-786, 2016 02 27.
Article in English | MEDLINE | ID: mdl-28516171

ABSTRACT

Patient-generated data is increasingly common in chronic disease care management. Smartphone applications and wearable sensors help patients more easily collect health information. However, current commercial tools often do not effectively support patients and providers in collaboration surrounding these data. This paper examines patient expectations and current collaboration practices around patient-generated data. We survey 211 patients, interview 18 patients, and re-analyze a dataset of 21 provider interviews. We find that collaboration occurs in every stage of self-tracking and that patients and providers create boundary negotiating artifacts to support the collaboration. Building upon current practices with patient-generated data, we use these theories of patient and provider collaboration to analyze misunderstandings and privacy concerns as well as identify opportunities to better support these collaborations. We reflect on the social nature of patient-provider collaboration to suggest future development of the stage-based model of personal informatics and the theory of boundary negotiating artifacts.

19.
J Med Internet Res ; 17(8): e203, 2015 Aug 21.
Article in English | MEDLINE | ID: mdl-26297627

ABSTRACT

BACKGROUND: The quantified self, self-monitoring or life-logging movement is a trend to incorporate technology into data acquisition on aspects of a person's daily life in terms of inputs (eg food consumed), states (eg mood), and performance (mental and physical). Consumer self-monitoring mobile phone apps have been widely studied and used to promote healthy behavior changes. Data collected through life-logging apps also have the potential to support clinical care. OBJECTIVE: We sought to develop an in-depth understanding of providers' facilitators and barriers to successfully integrating life-log data into their practices and creating better experiences. We specifically investigated three research questions: How do providers currently use patient-collected life-log data in clinical practice? What are provider concerns and needs with respect to this data? What are the constraints for providers to integrate this type of data into their workflows? METHODS: We interviewed 21 health care providers-physicians, dietitians, a nurse practitioner, and a behavioral psychologist-who work with obese and irritable bowel syndrome patients. We transcribed and analyzed interviews according to thematic analysis and an affinity diagramming process. RESULTS: Providers reported using self-monitoring data to enhance provider-patient communication, develop personalized treatment plans, and to motivate and educate patients, in addition to using them as diagnostic and adherence tools. However, limitations associated with current systems and workflows create barriers to regular and effective review of this data. These barriers include a lack of time to review detailed records, questions about providers' expertise to review it, and skepticism about additional benefits offered by reviewing data. Current self-monitoring tools also often lack flexibility, standardized formats, and mechanisms to share data with providers. CONCLUSIONS: Variations in provider needs affect tracking and reviewing needs. Systems to support diagnosis might require better reliability and resolution, while systems to support interaction should support collaborative reflection and communication. Automatic synthesis of data logs could help providers focus on educational goals while communication of contextual information might help providers better understand patient values. We also discuss how current mobile apps and provider systems do, and do not, support these goals, and future design opportunities to realize the potential benefits of using life-logging tools in clinical care.


Subject(s)
Attitude of Health Personnel , Health Records, Personal , Irritable Bowel Syndrome , Mobile Applications , Obesity , Communication , Data Collection , Humans , Professional-Patient Relations , Reproducibility of Results
20.
Clin Transl Gastroenterol ; 6: e96, 2015 Jul 02.
Article in English | MEDLINE | ID: mdl-26133109

ABSTRACT

OBJECTIVES: The aims of this study were to understand patients' willingness to use different types of health-related smartphone apps and to explore their attitudes on the overall value, usability, feasibility, credibility, intrusiveness, and obtrusiveness of these apps. METHODS: Questionnaires were distributed to adult patients presenting to gastroenterology clinics at an academic medical center. The 25-question survey consisted of 5-point Likert-type scale statements, multiple-choice questions, and open-ended questions. RESULTS: Participants were mainly White (N=94, 78%) and smartphone owners (N=125, 93%). The mean age was 40.8 years (N=121, s.d.=13.2). Participants were willing to use most types of apps unless it monitored their location or social networking activity. Half were less willing to use an app if it required a visible accessory. Most participants were willing to use a health-related app up to 5 min a day indefinitely but unwilling to pay out-of-pocket for it. Participants generally disagreed that an app would be hard to learn how to use, interfere with their daily routine, or be embarrassing to use in public. Overall, participants felt that health-related apps could help them and their doctors better manage their medical problems, but were neutral in trusting their quality. Most worried that personal information used for an app would fall into the wrong hands. CONCLUSION: Gastroenterology patients were willing to use and valued most types of health-related apps. They perceived this technology as feasible, usable, and relatively unobtrusive unless a visible accessory was required. However, many were concerned about their privacy.

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