scholarly journals The Association Between Increased Levels of Patient Engagement With an Internet Support Group and Improved Mental Health Outcomes at 6-Month Follow-Up: Post-Hoc Analyses From a Randomized Controlled Trial (Preprint)

2018 ◽  
Author(s):  
Emily M Geramita ◽  
Bea Herbeck Belnap ◽  
Kaleab Z Abebe ◽  
Scott D Rothenberger ◽  
Armando J Rotondi ◽  
...  

BACKGROUND We recently reported that depressed and anxious primary care patients randomized to a moderated internet support group (ISG) plus computerized cognitive behavioral therapy (cCBT) did not experience improvements in depression and anxiety over cCBT alone at 6-month follow-up. OBJECTIVE The 1% rule posits that 1% of participants in online communities generate approximately 90% of new user-created content. The aims of this study were to apply the 1% rule to categorize patient engagement with the ISG and identify whether any patient subgroups benefitted from ISG use. METHODS We categorized the 302 patients randomized to the ISG as: superusers (3/302, 1.0%), top contributors (30/302, 9.9%), contributors (108/302, 35.8%), observers (87/302, 28.8%) and those who never logged in (74/302, 24.5%). We then applied linear mixed models to examine associations between engagement and 6-month changes in health-related quality of life (HRQoL; Short Form Health Survey Mental Health Component, SF-12 MCS) and depression and anxiety symptoms (Patient-Reported Outcomes Measurement Information System, PROMIS). RESULTS At baseline, participant mean age was 42.6 years, 81.1% (245/302) were female, and mean Patient Health Questionnaire (PHQ-9), Generalized Anxiety Disorder scale (GAD-7), and SF-12 MCS scores were 13.4, 12.6, and 31.7, respectively. Of the 75.5% (228/302) who logged in, 61.8 % (141/228) created ≥1 post (median 1, interquartile range, IQR 0-5); superusers created 42.3 % (630/1488) of posts (median 246, IQR 78-306), top contributors created 34.6% (515/1488; median 11, IQR 10-18), and contributors created 23.1 % (343/1488; median 3, IQR 1-5). Compared to participants who never logged in, the combined superuser + top contributor subgroup (n=33) reported 6-month improvements in anxiety (PROMIS: –11.6 vs –7.8; P=.04) and HRQoL (SF-12 MCS: 16.1 vs 10.1; P=.01) but not in depression. No other subgroup reported significant symptom improvements. CONCLUSIONS Patient engagement with the ISG was more broadly distributed than predicted by the 1% rule. The 11% of participants with the highest engagement levels reported significant improvements in anxiety and HRQoL. CLINICALTRIAL ClinicalTrials.gov NCT01482806; https://clinicaltrials.gov/ct2/show/NCT01482806 (Archived by WebCite at http://www.webcitation.org/708Bjlge9).

2019 ◽  
Vol 3 (s1) ◽  
pp. 151-151
Author(s):  
Shanthini Kasturi ◽  
Jackie Szymonifka ◽  
Jessica Berman ◽  
Kyriakos Kirou ◽  
Alana Levine ◽  
...  

OBJECTIVES/SPECIFIC AIMS: The accurate and efficient serial measurement of patient centered outcomes is a priority in the clinical care of systemic lupus erythematosus (SLE). Patient-Reported Outcomes Measurement Information Systems (PROMIS®) Global Health Short Form (PROMIS10) is a 10-item universal patient reported outcome measure of global physical and mental health with construct validity in SLE. The longitudinal responsiveness (sensitivity to change) of PROMIS10 in SLE patients is unknown. We aimed to evaluate the responsiveness of PROMIS10 in SLE outpatients using patient and physician-derived anchors. METHODS/STUDY POPULATION: Adults meeting SLE classification criteria were recruited from an SLE Center of Excellence. Subjects completed PROMIS10 at two visits a minimum of one month apart. SLE disease activity was measured with a patient global assessment of change, a physician global assessment and the physician-derived SELENA-SLEDAI. Responsiveness over time of PROMIS10 scores was evaluated using known-groups validity. Effect sizes of changes in PROMIS global physical health and global mental health scores from baseline to follow up were compared across groups of patients who differed in their patient global assessment of change, physician global assessment, and SELENA-SLEDAI using Kruskal-Wallis tests. RESULTS/ANTICIPATED RESULTS: A diverse cohort of 228 SLE patients completed baseline surveys (Table 1), with 190 (83%) completing a follow up survey. Using the patient-based anchor, PROMIS10 demonstrated mild to moderate responsiveness to improvement (effect size 0.29) and worsening (effect sizes −0.27 and −0.54) of health status for both global physical health and global mental health (Table 2). Using the physician global assessment and SELENA-SLEDAI as anchors, there were no statistically significant differences in effect sizes across groups. DISCUSSION/SIGNIFICANCE OF IMPACT: PROMIS10 showed responsiveness over time to patient-reported, but not physician-derived changes in lupus health status. These data suggest that PROMIS10 can be used to efficiently measure and monitor important aspects of the patient experience of lupus not captured by physician-derived metrics. Further studies are needed to evaluate the role of PROMIS in optimizing longitudinal disease management in SLE.


2019 ◽  
Author(s):  
Philip I Chow ◽  
Shayna L Showalter ◽  
Matthew Gerber ◽  
Erin M Kennedy ◽  
David Brenin ◽  
...  

BACKGROUND Nearly half of the patients with breast cancer experience clinically significant mental distress within the first year of receiving their cancer diagnosis. There is an urgent need to identify scalable and cost-efficient ways of delivering empirically supported mental health interventions to patients with breast cancer. OBJECTIVE The aim of this study was to evaluate the feasibility of in-clinic recruitment for a mobile phone app study and to evaluate the usability and preliminary impact of a suite of mental health apps (IntelliCare) with phone coaching on psychosocial distress symptoms in patients recently diagnosed with breast cancer. METHODS This pilot study adopted a within-subject, 7-week pre-post study design. A total of 40 patients with breast cancer were recruited at a US National Cancer Institute–designated clinical cancer center. Self-reported distress (Patient Health Questionnaire-4) and mood symptoms (Patient-Reported Outcomes Measurement Information System depression and anxiety scales) were assessed at baseline and postintervention. App usability was assessed at postintervention. RESULTS The minimum recruitment threshold was met. There was a significant decrease in general distress symptoms, as well as symptoms of depression and anxiety, from baseline to postintervention. Overall, participants reported high levels of ease of app use and learning. Scores for app usefulness and satisfaction were reinforced by some qualitative feedback suggesting that tailoring the apps more for patients with breast cancer could enhance engagement. CONCLUSIONS There is a dire need for scalable, supportive interventions in cancer. The results from this study inform how scalable mobile phone–delivered programs with additional phone support can be used to support patients with breast cancer. INTERNATIONAL REGISTERED REPORT RR2-10.2196/11452


2016 ◽  
Vol 3 (2) ◽  
pp. e12 ◽  
Author(s):  
Jeremy Dean ◽  
Henry WW Potts ◽  
Chris Barker

Background Depression and anxiety are common, often comorbid, conditions, and Internet support groups for them are well used. However, little rigorous research has been conducted on the outcome of these groups. Objective This study aimed to evaluate the efficacy of an Internet support group in reducing depression and anxiety, and increasing social support and life satisfaction. Methods A randomized trial compared direction to an existing Internet support group for depression and anxiety with an online expressive writing condition. A total of 863 (628 female) United Kingdom, United States, and Canadian volunteers were recruited via the Internet. Online, self-report measures of depression, anxiety, social support, and satisfaction with life were administered at baseline, 3, and 6 months. Results All four outcomes – depression, anxiety, social support, and satisfaction with life – improved over the 6 months of the study (all P<.001). There was no difference in outcome between the two conditions: participants responded similarly to the expressive writing and the Internet support group. Engagement with the Internet support group was low, it had high 6-month attrition (692/795, 87%) and low adherence, and it received mixed and often negative feedback. The main problems reported were a lack of comfort and connection with others, negative social comparisons, and the potential for receiving bad advice. Expressive writing had lower attrition (194/295, 65%) and participants reported that it was more acceptable. Conclusions Until further evidence accumulates, directing people with depression and anxiety to Internet support groups cannot be recommended. On the other hand, online expressive writing seems to have potential, and its use for people with depression and anxiety warrants further investigation. Trial Registration Trial Registration: Clinicaltrials.gov NCT01149265; https://clinicaltrials.gov/ct2/show/NCT01149265 (Archived by WebCite at http://www.webcitation.org/6hYISlNFT)


2018 ◽  
Vol 45 (3) ◽  
pp. 397-404 ◽  
Author(s):  
Shanthini Kasturi ◽  
Jackie Szymonifka ◽  
Jayme C. Burket ◽  
Jessica R. Berman ◽  
Kyriakos A. Kirou ◽  
...  

Objective.To assess the feasibility, validity, and reliability of the Patient Reported Outcomes Measurement Information System Global Health Short Form (PROMIS10) in outpatients with systemic lupus erythematosus (SLE).Methods.SLE outpatients completed PROMIS10, Medical Outcomes Study Short Form-36 (SF-36), LupusQoL-US, and selected PROMIS computerized adaptive tests (CAT) at routine visits at an SLE Center of Excellence. Construct validity was evaluated by correlating PROMIS10 physical and mental health scores with PROMIS CAT, legacy instruments, and physician-derived measures of disease activity and damage. Test-retest reliability was determined among subjects reporting stable SLE activity at 2 assessments 1 week apart using intraclass correlation coefficients (ICC).Results.A diverse cohort of 204 out of 238 patients with SLE (86%) completed survey instruments. PROMIS10 physical health scores strongly correlated with physical function, pain, and social health domains in PROMIS CAT, SF-36, and LupusQoL, while mental health scores strongly correlated with PROMIS depression CAT, SF-36, and LupusQoL mental health domains (Spearman correlations ≥ 0.70). Active arthritis, comorbid fibromyalgia (FM), and anxiety were associated with worse PROMIS10 scores, but sociodemographic factors and physician-assessed flare status were not. Test-retest reliability for PROMIS10 physical and mental health scores was high (ICC ≥ 0.85). PROMIS10 required < 2 minutes to complete.Conclusion.PROMIS10 is valid and reliable, and can efficiently screen for impaired physical function, pain, and emotional distress in outpatients with SLE. With strong correlations to LupusQoL and SF-36 but significantly reduced responder burden, PROMIS10 is a promising tool for measuring patient-reported outcomes in routine SLE clinical care and value-based healthcare initiatives.


2018 ◽  
Vol 6 (12) ◽  
pp. 232596711881236 ◽  
Author(s):  
Jakob Ackermann ◽  
Takahiro Ogura ◽  
Robert A. Duerr ◽  
Alexandre Barbieri Mestriner ◽  
Andreas H. Gomoll

Background: Patient-reported outcome (PRO) measures are progressively utilized as evaluation tools in preoperative and postoperative assessments in orthopaedic practice. Identifying the potential utility of psychosocial factors to predict patient-reported pain and functional outcomes is of increasing interest to determine which patients will derive the greatest benefit from surgical treatment. Purpose/Hypothesis: The purpose of this study was to determine potential predictive associations between the preoperative 12-Item Short Form Health Survey Mental Component Summary (SF-12 MCS) score, patient characteristics or osteochondral allograft (OCA) morphology, and PROs in patients who underwent OCA transplantation. We hypothesized that poor preoperative mental health is associated with diminished PROs at final follow-up. Study Design: Case-control study; Level of evidence, 3. Methods: A total of 67 patients with a mean follow-up of 2.7 ± 1.0 years (range, 2-6 years) with complete preoperative and at least 24-month postoperative SF-12 MCS, Knee injury and Osteoarthritis Outcome Score (KOOS), Tegner, Lysholm, and International Knee Documentation Committee (IKDC) scores were included in this study. Pearson correlation coefficients and linear regression models were used to distinguish associations between age, sex, smoking status, body mass index, workers’ compensation, previous surgery, concomitant surgery, number of grafts, defect location, total graft size, SF-12 MCS score, and postoperative PRO scores as well as their improvement from baseline (delta). Results: The SF-12 MCS showed significant correlation with the KOOS Activities of Daily Living subscale ( P = .015), KOOS Sport/Recreation subscale ( P = .024), and IKDC ( P = .039). In the multivariable linear regression models, the SF-12 MCS had no predictive association with any PRO measure. Patient sex contributed significantly to the final regression models of the KOOS Sport/Recreation ( P = .042), Tegner score ( P = .024), and Lysholm score ( P = .031). The SF-12 MCS showed no bivariate correlation with changes in any PRO score (delta) ( P > .05). Conclusion: Preoperative mental health status did not predict perceived functional outcomes as assessed by PRO measures at final follow-up. Female sex was negatively correlated with KOOS Sport/Recreation, Tegner, and Lysholm scores.


2020 ◽  
Vol 3 ◽  
Author(s):  
Breanne Hand ◽  
Priya Soni ◽  
Rebecca Oyetoro ◽  
Anastasia Albanese-O’Neill ◽  
Heba Ismail ◽  
...  

Background:  Approximately 200,000 American youth live with Type 1 Diabetes (T1D). Intensive daily management is critical to optimize disease outcomes. Little is known about COVID-19 pandemic effects on persons with T1D and their caregivers. We hypothesized caregivers would report increased stress, lower self-efficacy (SE), and more difficult diabetes management associated with the pandemic.     Methods: A 49-item survey using Likert scales and open-ended response questions was distributed via email and T1D-related social media platforms from May 4-June 2,2020 to caregivers of children with T1D <18 years of age. The Patient-Reported Outcomes Measurement Information System (PROMIS) SE short form was used to measure general SE.     Results:  260 caregivers completed surveys: 94.2% female, mean age 42.4±7.7 years, 80.3% college degree or higher, 53.8% annual income >$99,000, 77.3% privately insured. Mean child age 11.0±4.1 years, mean T1D duration 4.2±3.4 years. 24.2% reported having COVID-19 or knowing someone diagnosed with COVID-19. 71.9% reported greater stress than before the pandemic. 9.6% reported job loss, 25.8% financial difficulty related to COVID-19. General SE levels were high, significantly correlated with overall COVID-19-related SE (r=0.394, p<0.001), and T1D care-SE during COVID-19 (r=0.421, p<0.001). 210 respondents provided open-ended response qualitative information on worries: 87.6% reported a worry, remainder not worried.  Common worries were COVID-19-related diabetes complications including uncontrolled blood sugars, diabetic ketoacidosis, and worry about child’s increased risk for severe disease, including death. 209 reported about challenges; 90.9% stated they had at least one challenge. Family isolation and mental health were the most-stated challenges.     Conclusion:  Despite reporting high overall SE, caregivers of T1D children during the pandemic reported greater overall stress, worries, and challenges. Given that data do not suggest that children with T1D are at increased risk of COVID-19 complications, healthcare providers should work to address this knowledge gap while providing families with social and mental health supports. 


2020 ◽  
Vol 41 (8) ◽  
pp. 893-900
Author(s):  
John R. Steele ◽  
Daniel J. Cunningham ◽  
Cynthia L. Green ◽  
Thomas J. Risoli ◽  
James K. DeOrio ◽  
...  

Background: Characteristics of responders, or those who achieve a clinical improvement above the level of a minimal clinically important difference, have not been defined for total ankle arthroplasty (TAA). The purpose of this study was to determine patient characteristics that distinguish possible responders from possible nonresponders after TAA using criteria established for other arthroplasty surgeries. Methods: Patients undergoing TAA who were enrolled into a prospective study at a single academic center evaluating patient-reported outcomes were included. Patients were characterized as possible responders if the relative or absolute improvement in their 2-year follow-up Short Musculoskeletal Function Assessment (SMFA) function score was at least 50% or 20, respectively, compared with their preoperative score, consistent with Outcome Measures in Rheumatoid Arthritis Clinical Trials and the Osteoarthritis Research Society International (OMERACT-OARSI) responder criteria. Patient factors were then associated with possible responder or nonresponder status and a multivariable analysis was performed. A total of 491 patients with complete data and 2-year follow-up were included in this study. Results: Multivariable analysis demonstrated that a higher baseline 36-Item Short-Form Survey (SF-36) mental component summary (MCS) score (OR [95% CI], 1.02 [1.01, 1.04]; P = .003), indicating better mental health, was associated with being a possible responder to TAA. The presence of rheumatic disease (OR [95% CI], 0.38 [0.22, 0.67]; P = .001) was a significant predictor of being a possible nonresponder. Conclusion: Our data reveal that a higher baseline SF-36 MCS score was associated with increased improvement in SMFA function scores, while rheumatic disease was associated with worse improvement in SMFA function scores after TAA. Patients with rheumatic disease or poor mental health may not achieve as favorable results after TAA and should be counseled appropriately. Level of Evidence: Level III, retrospective comparative study.


JMIR Cancer ◽  
10.2196/16476 ◽  
2020 ◽  
Vol 6 (1) ◽  
pp. e16476 ◽  
Author(s):  
Philip I Chow ◽  
Shayna L Showalter ◽  
Matthew Gerber ◽  
Erin M Kennedy ◽  
David Brenin ◽  
...  

Background Nearly half of the patients with breast cancer experience clinically significant mental distress within the first year of receiving their cancer diagnosis. There is an urgent need to identify scalable and cost-efficient ways of delivering empirically supported mental health interventions to patients with breast cancer. Objective The aim of this study was to evaluate the feasibility of in-clinic recruitment for a mobile phone app study and to evaluate the usability and preliminary impact of a suite of mental health apps (IntelliCare) with phone coaching on psychosocial distress symptoms in patients recently diagnosed with breast cancer. Methods This pilot study adopted a within-subject, 7-week pre-post study design. A total of 40 patients with breast cancer were recruited at a US National Cancer Institute–designated clinical cancer center. Self-reported distress (Patient Health Questionnaire-4) and mood symptoms (Patient-Reported Outcomes Measurement Information System depression and anxiety scales) were assessed at baseline and postintervention. App usability was assessed at postintervention. Results The minimum recruitment threshold was met. There was a significant decrease in general distress symptoms, as well as symptoms of depression and anxiety, from baseline to postintervention. Overall, participants reported high levels of ease of app use and learning. Scores for app usefulness and satisfaction were reinforced by some qualitative feedback suggesting that tailoring the apps more for patients with breast cancer could enhance engagement. Conclusions There is a dire need for scalable, supportive interventions in cancer. The results from this study inform how scalable mobile phone–delivered programs with additional phone support can be used to support patients with breast cancer. International Registered Report Identifier (IRRID) RR2-10.2196/11452


2016 ◽  
Vol 3 (2) ◽  
pp. e20 ◽  
Author(s):  
Bradley Carron-Arthur ◽  
Julia Reynolds ◽  
Kylie Bennett ◽  
Anthony Bennett ◽  
John Alastair Cunningham ◽  
...  

Background Little is known about the community structure of mental health Internet support groups, quantitatively. A greater understanding of the factors, which lead to user interaction, is needed to explain the design information of these services and future research concerning their utility. Objective A study was conducted to determine the characteristics of users associated with the subgroup community structure of an Internet support group for mental health issues. Methods A social network analysis of the Internet support group BlueBoard (blueboard.anu.edu.au) was performed to determine the modularity of the community using the Louvain method. Demographic characteristics age, gender, residential location, type of user (consumer, carer, or other), registration date, and posting frequency in subforums (depression, generalized anxiety, social anxiety, panic disorder, bipolar disorder, obsessive compulsive disorder, borderline personality disorder, eating disorders, carers, general (eg, “chit chat”), and suggestions box) of the BlueBoard users were assessed as potential predictors of the resulting subgroup structure. Results The analysis of modularity identified five main subgroups in the BlueBoard community. Registration date was found to be the largest contributor to the modularity outcome as observed by multinomial logistic regression. The addition of this variable to the final model containing all other factors improved its classification accuracy by 46.3%, that is, from 37.9% to 84.2%. Further investigation of this variable revealed that the most active and central users registered significantly earlier than the median registration time in each group. Conclusions The five subgroups resembled five generations of BlueBoard in distinct eras that transcended discussion about different mental health issues. This finding may be due to the activity of highly engaged and central users who communicate with many other users. Future research should seek to determine the generalizability of this finding and investigate the role that highly active and central users may play in the formation of this phenomenon.


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