Fibromyalgia Impact Reduction Using Online Personal Health Informatics: Longitudinal Observational Study

Background Personal health informatics have the potential to help patients discover personalized health management strategies that influence outcomes. Fibromyalgia (FM) is a complex chronic illness requiring individualized strategies that may be informed by analysis of personal health informatics data. An online health diary program with dynamic feedback was developed to assist patients with FM in identifying symptom management strategies that predict their personal outcomes, and found reduced symptom levels associated with program use. Objective The aim of this study was to determine longitudinal associations between program use and functional impact of FM as measured by scores on a standardized assessment instrument, the Fibromyalgia Impact Questionnaire (FIQ). Methods Participants were self-identified as diagnosed with FM and recruited via online FM advocacy websites. Participants used an online health diary program (“SMARTLog”) to report symptom ratings, behaviors, and management strategies used. Based on single-subject analysis of the accumulated data over time, individualized recommendations (“SMARTProfile”) were then provided by the automated feedback program. Indices of program use comprised of cumulative numbers of SMARTLogs completed and SMARTProfiles received. Participants included in this analysis met a priori criteria of sufficient program use to generate SMARTProfiles (ie, ≥22 SMARTLogs completed). Users completed the FIQ at baseline and again each subsequent month of program use as follow-up data for analysis. Kendall tau-b, a nonparametric statistic that measures both the strength and direction of an ordinal association between two repeated measured variables, was computed between all included FIQ scores and both indices of program use for each subject at the time of each completed FIQ. Results A total of 76 users met the a priori use criteria. The mean baseline FIQ score was 61.6 (SD 14.7). There were 342 FIQ scores generated for longitudinal analysis via Kendall tau-b. Statistically significant inverse associations were found over time between FIQ scores and (1) the cumulative number of SMARTLogs completed (tau-b=–0.135, P<.001); and (2) the cumulative number of SMARTProfiles received (tau-b=–0.133, P<.001). Users who completed 61 or more SMARTLogs had mean follow-up scores of 49.9 (n=25, 33% of the sample), an 18.9% drop in FM impact. Users who generated 11 or more new SMARTProfiles had mean follow-up scores of 51.8 (n=23, 30% of the sample), a 15.9% drop. Conclusions Significant inverse associations were found between FIQ scores and both indices of program use, with FIQ scores declining as use increased. Based on established criteria for rating FM severity, the top one-third of users in terms of use had clinically significant reductions from “severe” to “moderate” FM impact. These findings underscore the value of self-management interventions with low burden, high usability, and high perceived relevance to the user. Trial Registration ClinicalTrials.gov NCT02515552; https://clinicaltrials.gov/ct2/show/NCT02515552

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Fibromyalgia Impact Reduction Using Online Personal Health Informatics: Longitudinal Observational Study (Preprint)

10.2196/preprints.15819 ◽

2019 ◽

Author(s):

William Collinge ◽

Robert Soltysik ◽

Paul Yarnold

Keyword(s):

Health Informatics ◽

A Priori ◽

Management Strategies ◽

Personal Health ◽

Single Subject ◽

Cumulative Number ◽

Impact Reduction ◽

Health Diary ◽

Over Time

BACKGROUND Personal health informatics have the potential to help patients discover personalized health management strategies that influence outcomes. Fibromyalgia (FM) is a complex chronic illness requiring individualized strategies that may be informed by analysis of personal health informatics data. An online health diary program with dynamic feedback was developed to assist patients with FM in identifying symptom management strategies that predict their personal outcomes, and found reduced symptom levels associated with program use. OBJECTIVE The aim of this study was to determine longitudinal associations between program use and functional impact of FM as measured by scores on a standardized assessment instrument, the Fibromyalgia Impact Questionnaire (FIQ). METHODS Participants were self-identified as diagnosed with FM and recruited via online FM advocacy websites. Participants used an online health diary program (“SMARTLog”) to report symptom ratings, behaviors, and management strategies used. Based on single-subject analysis of the accumulated data over time, individualized recommendations (“SMARTProfile”) were then provided by the automated feedback program. Indices of program use comprised of cumulative numbers of SMARTLogs completed and SMARTProfiles received. Participants included in this analysis met a priori criteria of sufficient program use to generate SMARTProfiles (ie, ≥22 SMARTLogs completed). Users completed the FIQ at baseline and again each subsequent month of program use as follow-up data for analysis. Kendall tau-b, a nonparametric statistic that measures both the strength and direction of an ordinal association between two repeated measured variables, was computed between all included FIQ scores and both indices of program use for each subject at the time of each completed FIQ. RESULTS A total of 76 users met the a priori use criteria. The mean baseline FIQ score was 61.6 (SD 14.7). There were 342 FIQ scores generated for longitudinal analysis via Kendall tau-b. Statistically significant inverse associations were found over time between FIQ scores and (1) the cumulative number of SMARTLogs completed (tau-b=–0.135, <i>P</i><.001); and (2) the cumulative number of SMARTProfiles received (tau-b=–0.133, <i>P</i><.001). Users who completed 61 or more SMARTLogs had mean follow-up scores of 49.9 (n=25, 33% of the sample), an 18.9% drop in FM impact. Users who generated 11 or more new SMARTProfiles had mean follow-up scores of 51.8 (n=23, 30% of the sample), a 15.9% drop. CONCLUSIONS Significant inverse associations were found between FIQ scores and both indices of program use, with FIQ scores declining as use increased. Based on established criteria for rating FM severity, the top one-third of users in terms of use had clinically significant reductions from “severe” to “moderate” FM impact. These findings underscore the value of self-management interventions with low burden, high usability, and high perceived relevance to the user. CLINICALTRIAL ClinicalTrials.gov NCT02515552; https://clinicaltrials.gov/ct2/show/NCT02515552

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P34 Characteristics, diagnosis and management of Cushing’s disease - A systematic review and meta-analysis

BJS Open ◽

10.1093/bjsopen/zrab032.033 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

Author(s):

Chan Hee Koh ◽

Danyal Z Khan ◽

Ronneil Digpal ◽

Hugo Layard Horsfall ◽

Hani J Marcus ◽

...

Keyword(s):

Clinical Practice ◽

Cushing’S Disease ◽

Meta Analysis ◽

A Priori ◽

Pituitary Surgery ◽

Serum Cortisol ◽

Cushing's Disease ◽

Diagnosis And Management ◽

Over Time

Abstract Introduction The clinical practice and research in the diagnosis and management of Cushing’s disease remains heterogeneous and challenging to this day. We sought to establish the characteristics of Cushing’s disease, and the trends in diagnosis, management and reporting in this field. Methods Searches of PubMed and Embase were conducted. Study protocol was registered a-priori. Random-effects analyses were conducted to establish numerical estimates. Results Our screening returned 159 papers. The average age of adult patients with Cushing’s disease was 39.3, and 13.6 for children. The male:female ratio was 1:3. 8% of patients had undergone previous transsphenoidal resection. The ratio of macroadenomas: microadenomas:imaging-undetectable adenomas was 18:53:29. The most commonly reported preoperative biochemical investigations were serum cortisol (average 26.4µg/dL) and ACTH (77.5pg/dL). Postoperative cortisol was most frequently used to define remission (74.8%), most commonly with threshold of 5µg/dL (44.8%). Average remission rates were 77.8% with recurrence rate of 13.9%. Median follow-up was 38 months. Majority of papers reported age (81.9%) and sex (79.4%). Only 56.6% reported whether their patients had previous pituitary surgery. 45.3% reported whether their adenomas were macroadenoma, microadenoma or undetectable. Only 24.1% reported preoperative cortisol, and this did not improve over time. 60.4% reported numerical thresholds for cortisol in defining remission, and this improved significantly over time (p = 0.004). Visual inspection of bubbleplots showed increasing preference for threshold of 5µg/dL. 70.4% reported the length of follow up. Conclusion We quantified the characteristics of Cushing’s disease, and analysed the trends in investigation and reporting. This review may help to inform future efforts in forming guidelines for research and clinical practice.

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OP17 Impact of phenotypic and genetic factors on Crohn’s Disease evolution in a cohort of 13,926 patients

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab075.016 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S016-S017

Author(s):

Q Zhang ◽

L Fachal ◽

R Shawky ◽

M Parkes ◽

C Anderson ◽

...

Keyword(s):

Crohn’S Disease ◽

Crohn's Disease ◽

Disease Progression ◽

Management Strategies ◽

Standards Of Care ◽

Disease Evolution ◽

The Impact ◽

Disease Location ◽

Over Time

Abstract Background Patients with Crohn’s disease (CD) can develop complications including stricturing and penetrating disease [1, 2]. Although reliable baseline predictors of disease progression are urgently needed to inform management strategies, few studies have comprehensively explored the phenotypic and genetic determinants of disease progression in a sufficiently powered cohort. Methods We used data from 13,926 patients with CD in the UK IBD BioResource to investigate the effects of clinical phenotypes and genetics on CD progression. Median follow-up was 10.6 years and total follow-up was 193,033 patient-years. We applied the Montreal classification system to define disease as B1 (inflammatory), B2 (stricturing) and B3 (penetrating). Patients with B2 or B3 disease (N = 5,185) were compared to patients with B1 disease (N = 8,471) in a multivariate model fitted with both phenotype data and a polygenic score that we developed. Associations with q-values (false discovery rate adjusted p-values) less than 0.05 were defined as statistically significant. Results CD progression occurred over time from diagnosis (Figure 1). Consistent with previous findings, we confirmed factors including smoking, disease location and perianal disease were associated with disease progression [3] (Table 1). The impact of a genetic influence on disease progression was confirmed and shown to be independent of genetic effects on disease location [4]. Early prescription of medications showed a protective effect on disease progression: Infliximab, adalimumab and thiopurines significantly reduced the chance of B2/B3 progression when prescribed within two years of diagnosis. Additionally, we observed a decreased progression to B2/B3 disease in patients diagnosed recently (between 2012–2020) compared to those diagnosed before 2012. This finding persisted after conditioning on exposure to biologics and correcting for follow-up time and interval to first thiopurine prescription, and thus may be indicative of other improvements in standards of care in recent years. Conclusion Using a large, well-characterised cohort we confirm the importance of disease location, smoking status and genetics on disease progression. We highlight the positive impact of early medication prescription on disease progression and discover an independent signal relating to potential improvements in the standard of care in CD over time. These results create the framework for reliable predictors of CD progression that may better guide future CD management strategies. References

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Patterns of pain over time among children with juvenile idiopathic arthritis

Archives of Disease in Childhood ◽

10.1136/archdischild-2017-313337 ◽

2017 ◽

Vol 103 (5) ◽

pp. 437-443 ◽

Cited By ~ 21

Author(s):

Amir Rashid ◽

Lis Cordingley ◽

Roberto Carrasco ◽

Helen E Foster ◽

Eileen M Baildam ◽

...

Keyword(s):

Juvenile Idiopathic Arthritis ◽

Multinomial Logistic Regression ◽

Age At Onset ◽

Management Strategies ◽

Disease Onset ◽

Common Symptom ◽

Pain Outcomes ◽

First Pain ◽

Over Time

ObjectivesPain is a very common symptom of juvenile idiopathic arthritis (JIA). Disease activity alone cannot explain symptoms of pain in all children, suggesting other factors may be relevant. The objectives of this study were to describe the different patterns of pain experienced over time in children with JIA and to identify predictors of which children are likely to experience ongoing pain.MethodsThis study used longitudinal-data from patients (aged 1–16 years) with new-onset JIA. Baseline and up to 5-year follow-up pain data from the Childhood Arthritis Prospective Study (CAPS) were used. A two-step approach was adopted. First, pain trajectories were modelled using a discrete mixture model. Second, multinomial logistic regression was used to determine the association between variables and trajectories.ResultsData from 851 individuals were included (4 years, median follow-up). A three-group trajectory model was identified: consistently low pain (n=453), improved pain (n=254) and consistently high pain (n=144). Children with improved pain or consistently high pain differed on average at baseline from consistently low pain. Older age at onset, poor function/disability and longer disease duration at baseline were associated with consistently high pain compared with consistently low pain. Early increases in pain and poor function/disability were also associated with consistently high pain compared with consistently low pain.ConclusionsThis study has identified routinely collected clinical factors, which may indicate those individuals with JIA at risk of poor pain outcomes earlier in disease. Identifying those at highest risk of poor pain outcomes at disease onset may enable targeted pain management strategies to be implemented early in disease thus reducing the risk of poor pain outcomes.

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Damage in the anca-associated vasculitides: long-term data from the European Vasculitis Study group (EUVAS) therapeutic trials

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2013-203927 ◽

2013 ◽

Vol 74 (1) ◽

pp. 177-184 ◽

Cited By ~ 99

Author(s):

Joanna Robson ◽

Helen Doll ◽

Ravi Suppiah ◽

Oliver Flossmann ◽

Lorraine Harper ◽

...

Keyword(s):

A Priori ◽

Damage Index ◽

Study Group ◽

Therapeutic Trials ◽

Long Term Follow Up ◽

Frequent Items ◽

Vasculitis Damage Index ◽

Over Time

ObjectivesTo describe short-term (up to 12 months) and long-term (up to 7 years) damage in patients with newly diagnosed antineutrophil-cytoplasm antibody-associated vasculitis (AAV).MethodsData were combined from six European Vasculitis Study group trials (n=735). Long-term follow-up (LTFU) data available for patients from four trials (n=535). Damage accrued was quantified by the Vasculitis Damage Index (VDI). Sixteen damage items were defined a priori as being potentially treatment-related.ResultsVDI data were available for 629 of 735 patients (85.6%) at baseline, at which time 217/629 (34.5%) had ≥1 item of damage and 32 (5.1%) ≥5 items, reflecting disease manifestations prior to diagnosis and trial enrolment. LTFU data were available for 467/535 (87.3%) at a mean of 7.3 years postdiagnosis. 302/535 patients (56.4%) had VDI data at LTFU, with 104/302 (34.4%) having ≥5 items and only 24 (7.9%) no items of damage. At 6 months and LTFU, the most frequent items were proteinuria, impaired glomerular filtration rate, hypertension, nasal crusting, hearing loss and peripheral neuropathy. The frequency of damage, including potentially treatment-related damage, rose over time (p<0.01). At LTFU, the most commonly reported items of treatment-related damage were hypertension (41.5%; 95% CI 35.6 to 47.4%), osteoporosis (14.1%; 9.9 to 18.2%), malignancy (12.6%; 8.6 to 16.6%), and diabetes (10.4%; 6.7 to 14.0%).ConclusionsIn AAV, renal, otolaryngological and treatment-related (cardiovascular, disease, diabetes, osteoporosis and malignancy) damage increases over time, with around one-third of patients having ≥5 items of damage at a mean of 7 years postdiagnosis.

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“ET Plus”: Instability of the Diagnosis During Prospective Longitudinal Follow-up of Essential Tremor Cases

Frontiers in Neurology ◽

10.3389/fneur.2021.782694 ◽

2021 ◽

Vol 12 ◽

Author(s):

Daniella Iglesias-Hernandez ◽

Nikki Delgado ◽

Margaret McGurn ◽

Edward D. Huey ◽

Stephanie Cosentino ◽

...

Keyword(s):

A Priori ◽

Clinical Feature ◽

Time Interval ◽

Time Intervals ◽

Phenotypic Data ◽

Cross Sectional ◽

The Stability ◽

Prospective Longitudinal ◽

Over Time

Background: A recent consensus statement introduced the term “ET plus”. Although investigators have quantified the prevalence of ET plus in cross-sectional studies, patients with ET plus have not been tracked longitudinally; hence, there is no understanding of its stability over time.Methods: We present prospective, longitudinal phenotypic data on an ET cohort that was followed regularly at 18-month intervals (T1, T2, T3, T4) for up to 64 months. We assigned an ET or ET plus diagnosis to each case at each time interval.Results: There were 201 participants at baseline. The proportion with ET plus increased from 58.7% at baseline to 72.1% at T4 (p = 0.046). Of 172 (85.6%) who received a diagnosis of ET plus at one or more time intervals, the diagnosis was unstable (e.g., with reversion) in 62 (36.0%). We also assessed the stability of the clinical features of ET plus. Rest tremor was the most unstable clinical feature of ET plus; it was present in 59 participants, among whom it reverted from present to absent in 23 (39.0%). By contrast, for “memory impairment” (i.e., either mild cognitive impairment or dementia), the proportion who reverted from present to absent was only 21.3%.Conclusion: These data support our two a priori hypotheses: (1) the prevalence of ET plus would increase progressively, as it likely represents a more advanced stage of ET, and (2) the ET plus diagnosis would not be stable over time, as cases would fluctuate with respect to their phenotypic features and their assigned diagnoses.

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Effectiveness of the Chiari Health Index for Pediatrics instrument in measuring postoperative health-related quality of life in pediatric patients with Chiari malformation type I

Journal of Neurosurgery Pediatrics ◽

10.3171/2020.7.peds20250 ◽

2020 ◽

pp. 1-6

Author(s):

Georgina E. Sellyn ◽

Alan R. Tang ◽

Shilin Zhao ◽

Madeleine Sherburn ◽

Rachel Pellegrino ◽

...

Keyword(s):

Surgical Intervention ◽

Type I ◽

Health Related Quality ◽

Health Index ◽

Chiari Malformation Type I ◽

Related Quality ◽

Health Related ◽

Over Time

OBJECTIVEThe authors’ previously published work validated the Chiari Health Index for Pediatrics (CHIP), a new instrument for measuring health-related quality of life (HRQOL) for pediatric Chiari malformation type I (CM-I) patients. In this study, the authors further evaluated the CHIP to assess HRQOL changes over time and correlate changes in HRQOL to changes in symptomatology and radiological factors in CM-I patients who undergo surgical intervention. Strong HRQOL evaluation instruments are currently lacking for pediatric CM-I patients, creating the need for a standardized HRQOL instrument for this patient population. This study serves as the first analysis of the CHIP instrument’s effectiveness in measuring short-term HRQOL changes in pediatric CM-I patients and can be a useful tool in future CM-I HRQOL studies.METHODSThe authors evaluated prospectively collected CHIP scores and clinical factors of surgical intervention in patients younger than 18 years. To be included, patients completed a baseline CHIP captured during the preoperative visit, and at least 1 follow-up CHIP administered postoperatively. CHIP has 2 domains (physical and psychosocial) comprising 4 components, the 3 physical components of pain frequency, pain severity, and nonpain symptoms, and a single psychosocial component. Each CHIP category is scored on a scale, with 0 indicating absent and 1 indicating present, with higher scores indicating better HRQOL. Wilcoxon paired tests, Spearman correlations, and linear regression models were used to evaluate and correlate HRQOL, symptomatology, and radiographic factors.RESULTSSixty-three patients made up the analysis cohort (92% Caucasian, 52% female, mean age 11.8 years, average follow-up time 15.4 months). Dural augmentation was performed in 92% of patients. Of the 63 patients, 48 reported preoperative symptoms and 42 had a preoperative syrinx. From baseline, overall CHIP scores significantly improved over time (from 0.71 to 0.78, p < 0.001). Significant improvement in CHIP scores was seen in patients presenting at baseline with neck/back pain (p = 0.015) and headaches (p < 0.001) and in patients with extremity numbness trending at p = 0.064. Patients with syringomyelia were found to have improvement in CHIP scores over time (0.75 to 0.82, p < 0.001), as well as significant improvement in all 4 components. Additionally, improved CHIP scores were found to be significantly associated with age in patients with cervical (p = 0.009) or thoracic (p = 0.011) syrinxes.CONCLUSIONSThe study data show that the CHIP is an effective instrument for measuring HRQOL over time. Additionally, the CHIP was found to be significantly correlated to changes in symptomatology, a finding indicating that this instrument is a clinically valuable tool for the management of CM-I.

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