scholarly journals Development of the InCharge Health Mobile App to Improve Adherence to Hydroxyurea in Patients With Sickle Cell Disease: User-Centered Design Approach

10.2196/14884 ◽  
2020 ◽  
Vol 8 (5) ◽  
pp. e14884 ◽  
Author(s):  
Nicole M Alberts ◽  
Sherif M Badawy ◽  
Jason Hodges ◽  
Jeremie H Estepp ◽  
Chinonyelum Nwosu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Mobile App ◽  
Care Utilization ◽  
User Centered Design ◽  
Cell Disease ◽  
Mhealth Intervention ◽  
Acute Health Care ◽  
User Centered

Background Sickle cell disease (SCD) is an inherited blood disorder causing acute complications and chronic progressive end organ damage. SCD is associated with significant morbidity, early mortality, impaired health-related quality of life, and increased acute health care utilization. Hydroxyurea is a US Food and Drug Administration–approved medication that reduces disease complications, acute health care utilization, and costs. However, adherence to hydroxyurea is suboptimal. Mobile health (mHealth) interventions have the potential to improve hydroxyurea adherence, but few examples exist that are specific to the SCD population. Objective This study aimed to design a mHealth intervention for individuals with SCD to improve adherence to hydroxyurea, using a user-centered design that was informed by specific barriers to hydroxyurea adherence and utilization in this population. Methods This study consisted of 4 phases. In phase 1, individuals with SCD and health care providers participated in an optimization digital workshop. In phase 2, patients completed surveys pertaining to their interest in mHealth use, barriers and facilitators to hydroxyurea use, and health literacy. Phases 3 and 4 involved semistructured interviews and focus groups, respectively, and used the Health Belief Model (HBM) as the framework to investigate drivers of poor hydroxyurea adherence and to inform the development of an app prototype. In addition, in phase 4, we have incorporated the patients’ feedback on the preliminary app prototype and its features. Results Barriers to hydroxyurea adherence were consistent with the literature and included forgetfulness and several specific thoughts and emotions associated with hydroxyurea use (eg, fear of side effects, depression, stigma, and hopelessness). In addition, more than half of the participants reported potentially low health literacy. Preferred patient app features included 7 key components, namely (1) medication reminders and tracker, (2) disease education, (3) communication, (4) personalization, (5) motivation, (6) support during pain episodes, and (7) social support. Utilizing a user-centered design approach, data obtained from patients and providers were translated into features within the app, mapping to components of the HBM and the specific drivers of hydroxyurea adherence and matching the literacy level of the population, resulting in the development of a novel mobile app called InCharge Health. Conclusions The InCharge Health app is an mHealth intervention developed with substantial input from users and by mapping the HBM as the framework that guided the choice for its components. InCharge Health is a customized product for the SCD population aimed at optimizing medication adherence, with the end goal of improving quality of life and health outcomes among patients with SCD. The efficacy and implementation of the InCharge Health app as an mHealth intervention to promote hydroxyurea adherence will be tested in a future stepped-wedge multicenter trial for adolescents and adults with SCD.

scholarly journals Development of the InCharge Health Mobile App to Improve Adherence to Hydroxyurea in Patients With Sickle Cell Disease: User-Centered Design Approach (Preprint)

2019 ◽  
Author(s):  
Nicole M Alberts ◽  
Sherif M Badawy ◽  
Jason Hodges ◽  
Jeremie H Estepp ◽  
Chinonyelum Nwosu ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Mobile App ◽  
Care Utilization ◽  
User Centered Design ◽  
Cell Disease ◽  
Mhealth Intervention ◽  
Acute Health Care ◽  
User Centered

BACKGROUND Sickle cell disease (SCD) is an inherited blood disorder causing acute complications and chronic progressive end organ damage. SCD is associated with significant morbidity, early mortality, impaired health-related quality of life, and increased acute health care utilization. Hydroxyurea is a US Food and Drug Administration–approved medication that reduces disease complications, acute health care utilization, and costs. However, adherence to hydroxyurea is suboptimal. Mobile health (mHealth) interventions have the potential to improve hydroxyurea adherence, but few examples exist that are specific to the SCD population. OBJECTIVE This study aimed to design a mHealth intervention for individuals with SCD to improve adherence to hydroxyurea, using a user-centered design that was informed by specific barriers to hydroxyurea adherence and utilization in this population. METHODS This study consisted of 4 phases. In phase 1, individuals with SCD and health care providers participated in an optimization digital workshop. In phase 2, patients completed surveys pertaining to their interest in mHealth use, barriers and facilitators to hydroxyurea use, and health literacy. Phases 3 and 4 involved semistructured interviews and focus groups, respectively, and used the Health Belief Model (HBM) as the framework to investigate drivers of poor hydroxyurea adherence and to inform the development of an app prototype. In addition, in phase 4, we have incorporated the patients’ feedback on the preliminary app prototype and its features. RESULTS Barriers to hydroxyurea adherence were consistent with the literature and included forgetfulness and several specific thoughts and emotions associated with hydroxyurea use (eg, fear of side effects, depression, stigma, and hopelessness). In addition, more than half of the participants reported potentially low health literacy. Preferred patient app features included 7 key components, namely (1) medication reminders and tracker, (2) disease education, (3) communication, (4) personalization, (5) motivation, (6) support during pain episodes, and (7) social support. Utilizing a user-centered design approach, data obtained from patients and providers were translated into features within the app, mapping to components of the HBM and the specific drivers of hydroxyurea adherence and matching the literacy level of the population, resulting in the development of a novel mobile app called InCharge Health. CONCLUSIONS The InCharge Health app is an mHealth intervention developed with substantial input from users and by mapping the HBM as the framework that guided the choice for its components. InCharge Health is a customized product for the SCD population aimed at optimizing medication adherence, with the end goal of improving quality of life and health outcomes among patients with SCD. The efficacy and implementation of the InCharge Health app as an mHealth intervention to promote hydroxyurea adherence will be tested in a future stepped-wedge multicenter trial for adolescents and adults with SCD.

scholarly journals Decreased Hospitalizations and Improved Health-Related Outcomes Using Client-Centered Therapy in Adults with Sickle Cell Disease with High Health Care Utilization

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 3-4
Author(s):  
Jasmine McGhee ◽  
Karina L Wilkerson ◽  
Deva Sharma ◽  
Gina Frieden ◽  
Adetola A. Kassim
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Depressive Symptoms ◽  
Care Utilization ◽  
Cell Disease ◽  
Post Intervention ◽  
High Utilizers ◽  
Health Related ◽  
Client Centered Therapy

Background:Sickle cell disease (SCD) is a chronic multisystem disorder associated with vaso-occlusive pain and organ damage, leading to substantial morbidity, impaired health-related quality of life, increased health care costs, and a high risk of premature death (Platt el al. N Engl J Med. 1994). SCD complications and pain episodes accounted for 23% of statewide admissions, mainly by a small group of high utilizers. (Woods et al. Public Health Rep, 1997). Adults with SCD have a high rate of depression, 35% compared to 6.7% in the general adult population (Adam, Flahiff, Kamble, et al. 2017). Chronic persistent pain occurs in more than a third of adults with SCD. Opioid analgesics, the mainstay for the management of acute and chronic pain, often results in opiate use disorder (Ehrentraut et al. J Pediatr Psychol. 2014). Current clinical approaches to address depressive symptoms in SCD have not been effective due to the gaps in care and barriers to access healthcare resources. Client-centered (or person-centered) therapy, is a non-directive approach to counseling that incorporates the concepts of unconditional positive regard, empathetic understanding, genuine affect, and culturally responsive care to improve psychosocial outcomes (Meyer & Zane, 2018). We sought to address these perceived gaps in care using client-centered therapy to improve patient related health outcomes in a cohort of adult patient who were high utilizers. Methods:The study sample comprised 9 patients with SCD (HbSS and SC), ages 23-42, who followed with the adult SCD Clinic at Vanderbilt University Medical Center in Nashville, TN. This cohort of patients was selected as they accounted for the highest health care utilization in our adult program. Demographics and baseline clinic data were obtained on each participant, including pre- and post-measures for hospitalizations, oral morphine equivalent (OME), PHQ-9 to measure depressive symptoms, and the Working Alliance Inventory (WAI), to measure the effectiveness of the client-centered approach to therapy (based on consensus of goals, confidence in and commitment to helping relationship, and mutual trust). Our approach to evaluations is depicted in Figure. Exclusion criteria included current diagnosis of psychosis or a comorbid disorder with psychosis as defined by the Diagnostic and Statistical Manual of Mental Disorders (Fifth Edition); active suicidal/homicidal ideation, and unwillingness to participate in counseling. Patients were expected to attend 7 individual sessions for 60 minutes each with a trained mental health clinician. Clinical and laboratory data was obtained through electronic medical record under an IRB approved protocol. Results:In our sample, 5/9 (56%) of our patients were male and they were all African Americans. Eight out of 9 participants had HbSS and 1 had HbSC. The median age of all participants was 30 years. The participants completed a combined total of 64 sessions over an average of 6.7 months. All participants completed an average of 7 sessions each. The average number of hospitalizations pre-intervention per participant was 3 and decreased to 1 post-intervention. The pre and post OME totals for 6/9 participants remained stable. One participant (#8) had a 50% decrease in OME, and two participants (#2, #3) had an increase in total OME post-intervention associated with pregnancy-related complications. Pre-intervention, 69% of participants identified mild to moderate severity in depressive symptoms. The total PHQ-9 scores decreased post-intervention by 3 points, or by 4.4%. The WAI average post-intervention depicts an average of 87.5% of participants identified a strong working alliance with their therapist (Table). Conclusion:Our pilot study shows that client-centered therapy is a safe and effective approach to address age-dependent chronic health challenges of adults with SCD. Client-centered therapy decreased hospitalization rates and PHQ-9 scores for our high utilizers. Though there was not a statistically significant decrease in participants' OME, 67% of the sample remained stable, without an OME increase during the intervention period. Future research and longer-term studies are needed on utilizing this approach to address coping mechanisms, baseline stress levels, and overall quality of life in a larger cohort of adults with SCD. Disclosures No relevant conflicts of interest to declare.

Health Care Utilization, Transition Readiness, and Quality of Life: A Latent Class Analysis

2020 ◽  
Author(s):  
Katherine A Traino ◽  
Christina M Sharkey ◽  
Megan N Perez ◽  
Dana M Bakula ◽  
Caroline M Roberts ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Health Care Utilization ◽  
Latent Class Analysis ◽  
Latent Class ◽  
Care Utilization ◽  
Class Membership ◽  
Transition Readiness ◽  
High Utilization

Abstract Objective To identify possible subgroups of health care utilization (HCU) patterns among adolescents and young adults (AYAs) with a chronic medical condition (CMC), and examine how these patterns relate to transition readiness and health-related quality of life (HRQoL). Methods Undergraduates (N = 359; Mage=19.51 years, SD = 1.31) with a self-reported CMC (e.g., asthma, allergies, irritable bowel syndrome) completed measures of demographics, HCU (e.g., presence of specialty or adult providers, recent medical visits), transition readiness, and mental HRQoL (MHC) and physical HRQoL (PHC). Latent class analysis identified four distinct patterns of HCU. The BCH procedure evaluated how these patterns related to transition readiness and HRQoL outcomes. Results Based on seven indicators of HCU, a four-class model was found to have optimal fit. Classes were termed High Utilization (n = 95), Adult Primary Care Physician (PCP)-Moderate Utilization (n = 107), Family PCP-Moderate Utilization (n = 81), and Low Utilization (n = 76). Age, family income, and illness controllability predicted class membership. Class membership predicted transition readiness and PHC, but not MHC. The High Utilization group reported the highest transition readiness and the lowest HRQoL, while the Low Utilization group reported the lowest transition readiness and highest HRQoL. Conclusions The present study characterizes the varying degrees to which AYAs with CMCs utilize health care. Our findings suggest poorer PHC may result in higher HCU, and that greater skills and health care engagement may not be sufficient for optimizing HRQoL. Future research should examine the High Utilization subgroup and their risk for poorer HRQoL.

scholarly journals Quality of Life and Health Care Utilization in the CIRCA-DOSE Study

2020 ◽  
Vol 6 (8) ◽  
pp. 935-944 ◽  
Author(s):  
Jason G. Andrade ◽  
Laurent Macle ◽  
Atul Verma ◽  
Marc W. Deyell ◽  
Jean Champagne ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Health Care Utilization ◽  
Care Utilization ◽  
Dose Study

scholarly journals Factors related to perceived continuity of care in hospitalized cardiac patients

2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
E Safstrom ◽  
T.J Jaarsma ◽  
L.N Nordgren ◽  
M.L Liljeroos ◽  
A.S Stomberg
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Health Care ◽  
Continuity Of Care ◽  
Perceived Control ◽  
Care Utilization ◽  
Funding Source ◽  
Patient Reported

Abstract Background Since healthcare systems are increasingly complex and often fragmented, continuity of care after hospitalization is a priority to increase patient safety and satisfaction. Aim Describe factors related to continuity of care in patients hospitalized due to cardiac conditions. Methods This cross-sectional multicenter study enrolled patients 6 weeks after hospitalization due to cardiac conditions. A total of 993 patients were included (mean age 72.2 (SD 10.4), males 66%) with AMI (35%), AF (25%), angina (21%) and HF (17.3%). Patients completed the Patient Continuity of Care Questionnaire, a questionnaire based on the definition that continuity of care is “the extent to which a series of health care services is experienced as connected and coherent and is consistent with a patient's health needs and personal circumstances”. The total score of the questionnaire ranges from 6 to 30, higher score indicating higher continuity and a score <24 indicating insufficient continuity. Cronbach's alpha on the total PCCQ was 0.94. Correlations between PCCQ and quality of life, depression, anxiety, perceived control and health care utilization were estimated using spearman rang correlation. Results Insufficient continuity of care ranged between 47% to 59% in the different diagnosis groups, which the highest continuity in the AMI group and lowest in patients with atrial fibrillation. In patients hospitalized due to AMI (n=355, mean age 71 (± 11), 70% men), continuity of care was related to higher perceived control, higher quality of life, a good financial situation, being a man, no symptoms of anxiety or depression (ᚹ range 0.17–0.26 p≤0.002). A low score on the PCCQ were associated with follow-up visit to a nurse in primary care after hospitalization (ᚹ −0.12 p=0.033). In patients hospitalized due to angina (n=210, mean age 73 (± 9), 74% men), continuity of care was related to higher perceived control, higher quality of life and no depressive symptoms (ᚹ range between 0.20 and 0.26 p=0.005). In patients with AF, (n=255, mean age 71 (± 10.), 58% men), continuity of care was related to having had contact by telephone with a nurse-led AF clinic, higher perceived control, higher quality of life and not being depressed (ᚹ range between 0.14–0.25 p=0.03). In patients with HF, (n=173, mean age 77 (±8) 59% men), continuity was related to male ender, younger age, follow-up in a nurse-led HF clinic and not being anxious (ᚹ range between 0.16 and 0.22 p=0.004–0.047). Low total score on PCCQ correlated to having had telephone contact with nurse in primary care (ᚹ −0.24 p=0.002). Conclusion Almost half of all patient reported insufficient continuity of care. Perceived control, quality of life, and symptoms of depression were related to higher continuity of care in all diagnose groups except heart failure. Further, there was a correlation between continuity and follow-up visits or contact by telephone with nurse-led clinics in all diagnose groups except angina. Funding Acknowledgement Type of funding source: Foundation. Main funding source(s): Medical Research Council of Southeast Sweden, Centre for Clinical Research Sörmland

scholarly journals Depression, quality of life, and medical resource utilization in sickle cell disease

2017 ◽  
Vol 1 (23) ◽  
pp. 1983-1992 ◽  
Author(s):  
Soheir S. Adam ◽  
Charlene M. Flahiff ◽  
Shital Kamble ◽  
Marilyn J. Telen ◽  
Shelby D. Reed ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Care ◽  
Sickle Cell Disease ◽  
Medical Resource ◽  
Life Outcomes ◽  
Cell Disease ◽  
Medical Resource Utilization ◽  
Key Points ◽  
Care Costs

Key Points Depression was found in 35.2% of adult SCD patients and was strongly associated with worse physical and mental quality-of-life outcomes. Total health care costs for adult SCD patients with depression were more than double those of SCD patients without depression.

Mental Health Symptoms, Quality of Life and Barriers to Accessing Health Care in Sickle Cell Disease

Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 337-337
Author(s):  
Marsha J Treadwell ◽  
Fernando Barreda ◽  
Kimberly Major ◽  
Valentino Walker ◽  
Wanda Payton ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Health Care ◽  
African American ◽  
Pediatric Patients ◽  
Cell Disease ◽  
Mental Health Symptoms ◽  
Health Symptoms ◽  
Hemoglobin Type

Abstract Abstract 337 Background: Individuals with sickle cell disease (SCD) face a number of barriers as they attempt to access timely and appropriate health care. We previously reported that adult and pediatric patients with SCD differed on some barriers reported, with adults citing more barriers related to insurance and provider knowledge and attitudes. Patients' emotional status, including worry, frustration and anger, were also reported barriers to accessing health care. However, there has been limited research formally assessing mental health symptoms as potential barriers to accessing health care in SCD. Objective: To investigate the relation between mental health symptoms, quality of life and reported barriers to accessing healthcare. We hypothesized that 1) mental health symptoms would be predictive of reported barriers, for adults with SCD compared with children, and 2) quality of life would be inversely related to the number of reported barriers, for adults and children. Methods: 112 patients with SCD were enrolled in a cross sectional study. Pediatric patients and their parents, and adults with SCD completed screening measures of depression (Patient Health Questionnaire-9 or Children's Depression Inventory) and anxiety (Generalized Anxiety Disorder- 7 or Multidimensional Anxiety Scale for Children-10) and were categorized with no, mild, moderate or severe symptoms. They also completed quality of life measures (SF 36v2® or PedsQL®) and a validated checklist of barriers to accessing healthcare for SCD. Results: Participants were 35 children (M age 9.5, 1– 17 years) and their parents, and 77 adults (M age 31.2, 18 – 68 years); 53% female; 75% African American; 71% diagnosed with Hgb SS. Sixty one percent of adults reported moderate to severe depressive symptoms, compared with 4% of children (p <.001). Thirty-six percent of adults reported moderate to severe symptoms of anxiety, compared with 12% of children (p <.05). Adults reported significantly worse quality of life in the Physical (M =53.0, SD =23.7) and Mental Health (M =49.4, SD =23.2) domains compared with children (Physical M =65.6, SD =21.4, p <.05 and Mental Health M =66.0, SD =17.9, p <.01). In regression analyses, we found that, with gender and hemoglobin type controlled for, depression was predictive of number of barriers faced for adult (R2 =.27, β = 3.57 ±.88, n = 74) but not pediatric patients (R2 =.26, β = 5.68 ± 2.54, n = 26). Anxiety was predictive of number of barriers faced for adults (R2 =.28, β = 3.99 ±.94, n = 75) but not pediatric patients (R2 =.13, β = 2.13 ± 1.96, n = 26). Greater number of barriers faced was predictive of worse quality of life in the Mental Health domain for both adults and pediatrics, controlling for gender and hemoglobin type (R2 =.19, β = −.98 ±.26, n = 73 for adults and R2 =.28, β = −1.06 ±.36, n = 33 for pediatrics). In the Physical domain, greater number of barriers faced was predictive of worse quality of life for adults but not pediatrics, controlling for gender and hemoglobin type (R2 =.18, β = −.97 ±.26, n = 73 for adults and R2 =.15, β = −1.03 ±.46, n = 33 for pediatrics). Conclusion: Adults with SCD reported a higher prevalence of moderate to severe symptoms of depression and anxiety, compared with children with SCD and the general African American population. Mental health symptoms were predictive of difficulties with accessing health care for adult more so than pediatric patients. There is an urgent need to address barriers to health care for patients with SCD; to prevent morbidity in pediatrics that may contribute to impaired quality of life in adulthood; and to improve mental health services available to adults in particular. Disclosures: No relevant conflicts of interest to declare.

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