PSYCHOSOCIAL FACTORS AND MOBILE HEALTH INTERVENTION: IMPACT ON LONG-TERM OUTCOMES AFTER LUNG TRANSPLANTATION

Identifying and intervening on modifiable risk factors may improve outcomes in lung transplantation (LTx), which, despite recent improvements, remain suboptimal. Evidence suggests that two modifiable risk factors, psychiatric disorders and nonadherence, may improve LTx outcomes in the short-term; however, neither has been explored in the long-term. Therefore, the overarching goal of this dissertation was to determine the long-term impact of these modifiable risk factors and intervention to attenuate them. First, we examined the relationship of pre- and early post-transplant psychiatric disorders on LTx-related morbidity and mortality for up to 15 years post-LTx. Our sample included 155 1-year LTx survivors enrolled in a prospective study of mental health post- LTx. We found that depression during the first year post-LTx increased risk of BOS, mortality and graft loss by nearly twofold, and that pre-transplant depression and pre- and post-transplant anxiety were not associated with clinical outcomes. Next, we examined the impact of a mobile health intervention designed to promote adherence to the post-LTx regimen, PocketPATH, on long-term LTx-related morbidity, mortality and nonadherence. We conducted two follow-up studies to the original yearlong randomized controlled trial in which participants assigned to PocketPATH showed improved adherence to the regimen, relative to usual care. Among the 182 LTx recipients (LTxRs) who survived the original trial, we found that PocketPATH had a protective indirect effect on mortality by promoting LTxRs’ communication with the LTx team during the first year. Among the 104 LTxRs who completed the follow-up assessment, we found that PocketPATH’s adherence benefits over the first year were not sustained into the long-term, although LTxRs assigned to PocketPATH were more likely than LTxRs assigned to usual care to perform the home self-care tasks of the regimen at follow-up. Median time since LTx for participants in both follow-up studies was 4.2 years (range, 2.8-5.7 years). This dissertation presents an important first step toward identifying and intervening on modifiable risk factors to improve long-term LTx outcomes. Mobile health technologies offer limitless potential to target these risk factors and others. More work is needed to determine specific features and long-term patient engagement strategies that will optimize and sustain intervention effectiveness

FACTORS ASSOCIATED WITH ACCEPTANCE AND USE OF MOBILE TECHNOLOGY FOR HEALTH SELF-MONITORING AND DECISION SUPPORT IN LUNG TRANSPLANT RECIPIENTS

Objectives. This cross-sectional study in lung transplant recipients (LTR) described acceptance and use of a smartphone application, Pocket PATH®, for health self-monitoring and decision support for reporting critical values in 12 months post-transplantation; and explored predictors of use and reporting. Methods. This secondary analysis, guided by the Unified Theory of Acceptance and Use of Technology, included 96 LTR randomly assigned to the Pocket PATH group. Intention to use was measured at baseline. Due to skewness, use (percentage of days used) in 0 to 2, > 2 to ≤ 6, > 6 to ≤ 12, and 0 to 12 months was categorized as Low, Moderate, and High, using 25% and 75% as cutoffs. Reporting critical values was dichotomized as 100% and < 100% reporting. Descriptive statistics were used to summarize data and logistic regressions were employed to explore predictors of use and reporting. Results. About 85% of LTR were very likely to use Pocket PATH. However, intention was not associated with use. Use decreased across four time intervals. Self-care agency interacted with gender (OR=0.94, p=0.04) and satisfaction with technology training (OR=0.93, p=0.02) in 0 to 2 months. Use from > 2 to ≤ 6 months was predicted by satisfaction with technology training (OR=3.00, p=0.03), and age interacted with psychological distress (OR=0.96, p=0.04). Use after 6 months was predicted by psychological distress (OR=0.42, p=0.04) and physical function (OR=1.07, p=0.04). Use from 0 to 12 months was predicted by age (OR=1.05, p=0.03), satisfaction with technology training (OR=2.78, p=0.05) and physical function (OR=1.09, p=0.03). Among 53 (55.2%) LTR with critical values detected, 62.3% (n=33) had 100% reporting. With increased technology experience, odds of 100% reporting decreased in men but increased in women (OR=0.21, p=0.03). LTR whose income met basic needs (OR=0.01, p=0.02), or with longer hospital stay (OR=0.94, p=0.01), were less likely to have 100% reporting. Moderate use group was less likely to report than High (OR=0.11, p=0.02) and Low (OR=0.04, p=0.02) use groups. Conclusion. Use of mobile technology for health self-monitoring and for reporting critical values was predicted by different factors. Clinicians should assess LTR at risk for poor use and reporting

The multidimensional kidney transplant self-management scale : development and psychometric testing

Indiana University-Purdue University Indianapolis (IUPUI)Poor long-term kidney transplant outcomes are a significant problem in the U.S. Interventions must focus on preserving allograft function by managing modifiable risk factors. An instrument capable of identifying problems with post-kidney transplant self-management behaviors may enable the design and testing of self-management interventions. This study’s purpose was to test the psychometric properties of the new Kidney Transplant Self-Management Scale (KT–SM). The Zimmerman framework adapted for kidney transplant self-management guided the cross-sectional study. A total of 153 kidney recipients recruited from Facebook® completed the Self-Efficacy for Managing Chronic Disease (SEMCD), Patient Activation Measure (PAM), Kidney Transplant Questionnaire (KTQ), and KT–SM Scale instruments via a REDCap® survey. Most participants were female (65%), White (81.7%), and middle-aged (M = 46.7; SD = 12.4 years) with a history of dialysis (73%) and received a kidney transplant an average of 6.58 years previous (SD = 6.7). Exploratory factor analysis results supported the 16-item KT–SM Scale as a multidimensional scale with five domains with loadings ranging between .39 and .89: medication adherence, protecting kidney, cardiovascular risk reduction, ownership, and skin cancer prevention. Internal consistency reliability for the total scale (Cronbach’s α = .84) and five domains ranged from .71 to .83. The total and domains were positively correlated, ranging from r = .51 to .76, p = .01. Criterion-related validity was evidenced by significant correlations of KT–SM and domains with SEMCD (r =.22 to .53, p = .01), PAM (r = .31 to .52, p = .01), and the overall KTQ (r = .20 to .32, p = .01) except for one KT–SM domain: protecting kidney. Construct validity was evaluated using multivariate regression analysis. The linear combination of age, patient activation, and self-efficacy explained 45% of the variance in KT–SM behaviors; 47% of the variance in KTQ (measuring quality of life) was predicted by age, comorbidity, and self-efficacy. These findings provide beginning evidence of reliability and validity for the newly developed KT–SM scale. Instruments like this may provide a means to capture the self-management behaviors of the kidney transplant population, which is critical for future work on interventions

Mobile Health Technologies

Mobile Health Technologies, also known as mHealth technologies, have emerged, amongst healthcare providers, as the ultimate Technologies-of-Choice for the 21st century in delivering not only transformative change in healthcare delivery, but also critical health information to different communities of practice in integrated healthcare information systems. mHealth technologies nurture seamless platforms and pragmatic tools for managing pertinent health information across the continuum of different healthcare providers. mHealth technologies commonly utilize mobile medical devices, monitoring and wireless devices, and/or telemedicine in healthcare delivery and health research. Today, mHealth technologies provide opportunities to record and monitor conditions of patients with chronic diseases such as asthma, Chronic Obstructive Pulmonary Diseases (COPD) and diabetes mellitus. The intent of this book is to enlighten readers about the theories and applications of mHealth technologies in the healthcare domain

Psycho-Social Determinants and Strategies for Facilitating Adherence to a Complex Medication Regimen in Cancer Treatment

Medication adherence in individuals taking multiple medications has received little research attention, despite its importance in clinical treatment and its relevance to achieving optimal health outcomes. With the growth of the aging population and prevalence of chronic diseases, adherence to multiple medication regimens has become a critical issue. This project, consisting of three related studies, investigated medication adherence of cancer patients who received an allogeneic hematopoietic cell transplant (alloHCT) and whose conditions require adherence to complex, multiple medication regimens for prolonged periods of time. The Information-Motivation-Behavioral Skills (IMB) model was the theoretical framework for the study. This model posits that well-informed, highly motivated individuals have better adherence behaviors. In addition to having optimal information and motivation, patients also need to develop the appropriate behavioral skills to maximize the value of information, motivation and aid adherence. Thus, within this framework, the link between information, motivation, and adherence is mediated by behavioral skills. Using the IMB model, the aim of this project was to examine different approaches to facilitating medication adherence after transplant. The first study used a mixed-methods approach to examine the feasibility of using an electronic pillbox for assessing adherence to multiple medications. The second study utilized patient interview data to assess the link between social support and adherence to multiple medications. The third study also used patient interview data to identify adherence determinants and strategies that patients used after transplant. The results of the first study show that even though some features of the electronic pillbox need to be modified, it is feasible to use it to facilitate medication adherence for patients after transplant. The second study demonstrated the importance of social support from lay caregivers, such as spouse and family members, as well as healthcare providers, for adherence tasks after transplant. Lay caregivers provided emotional and practical support, whereas healthcare providers were the main source of informational and medical support. The third study identified various determinants that facilitated and hindered medication adherence. The study also suggests practical lessons for adherence to multiple medications. Collectively, the findings provide a foundation for developing intervention approaches for this particular patient population

Evidence for funding, organising and delivering health care services targeting secondary prevention and management of chronic conditions. CHERE Working Paper 2009/6

This paper is designed as an issues paper. Its aim is to set out what evidence is available regarding the effectiveness and efficiency of funding, organisation and delivery of services directed at preventing and managing chronic conditions, and identify what further information is required. The latter will then be used as a means of identifying gaps in information which can be addressed by research. The information is not presented as a comprehensive review of all available evidence but as a preliminary scoping of the results of the most recent literature.chronic conditions, prevention, funding

Adverse Symptoms of Immunosuppressants: The Patient Perspective

Background: Solid organ transplant recipients require lifelong immunosuppressive therapy in order to prevent graft rejection. Unfortunately, these multiple-drug regimens are associated with frequent adverse effects that can negatively impact quality of life (QoL), cause interruptions in treatment, and may even contribute to treatment failure (i.e., graft rejection). Objectives: To develop and pilot test a survey that characterizes patient perceptions of adverse symptoms of immunosuppressants (ASI), QoL, and medication adherence in a population of patients who have received a solid organ transplant. Methods: A literature review was undertaken to identify tools assessing patient symptom experience, QoL, and adherence in transplant recipients. A single questionnaire was developed to assess all of these domains. On completion of the survey development phase, the tool was piloted electronically to all adult transplant recipient members of the Canadian Transplant Association. Questionnaires were interpreted using descriptive analysis and frequencies, and respondent’s comments were qualitatively assessed using thematic analysis. Feasibility was assessed by response rate, patient’s feedback and missing data. Results: The literature search identified three tools that were incorporated into the questionnaire: the Modified Transplant Symptom Occurrence and Symptom Distress Scale (MTSOSD), the Short Form- 12 (SF- 12), and the Basel Assessment of Adherence to Immunosuppressive Medications Scale (BAASIS) to measure symptom experience, QoL, and nonadherence to immunosuppressive medications, respectively. The questionnaire was distributed to 249 solid organ transplant recipients and achieved a 51% response rate (n=127). Mean age of survey respondents was 55.5 ±13.2 years, most had good allograft function, few co-morbidities, and reported a similar QoL to that of the general public. More than half of the respondents (61%) received their transplant over 6 years ago, and respondents reported a median of 19 different adverse symptoms (IQR 12- 27). The most prevalent symptoms for both men and women were tiredness, flatulence, and lack of energy (reported at an incidence of 84%, 82% and 70% for women and 80%, 76%, and 66% for men, respectively), while the most distressing symptoms were tiredness, flatulence, and sleeplessness (mean 2.2, 2.2 and 2.1 on a scale of 0 to 4, respectively) in men and joint pain, diarrhea, and lack of energy in women (mean 2.4, 2.4, and 2.3 on a scale of 0 to 4, respectively). Nonadherence to immunosuppressive medications was reported by 29-50% of respondents. Conclusion: It is feasible to assess symptom experience, QoL and nonadherence to immunosuppressive medications using a single tool in transplant recipients. Despite the high prevalence of adverse symptoms, QoL remained high in members of the Canadian Transplant Association. Wider application of this tool will determine if the findings from this study sample are representative of a general population of patients with solid organ transplants.

Clinical trials of health information technology interventions intended for patient use: Unique issues and considerations

BACKGROUND: Despite the proliferation of health information technology (IT) interventions, descriptions of the unique considerations for conducting randomized trials of health IT interventions intended for patient use are lacking. PURPOSE: Our purpose is to describe the protocol to evaluate Pocket PATH (Personal Assistant for Tracking Health), a novel health IT intervention, as an exemplar of how to address issues that may be unique to a randomized controlled trial (RCT) to evaluate health IT intended for patient use. METHODS: An overview of the study protocol is presented. Unique considerations for health IT intervention trials and strategies are described to maintain equipoise, to monitor data safety and intervention fidelity, and to keep pace with changing technology during such trials. LESSONS LEARNED: The sovereignty granted to technology, the rapid pace of changes in technology, ubiquitous use in health care, and obligation to maintain the safety of research participants challenge researchers to address these issues in ways that maintain the integrity of intervention trials designed to evaluate the impact of health IT interventions intended for patient use. CONCLUSIONS: Our experience evaluating the efficacy of Pocket PATH may provide practical guidance to investigators about how to comply with established procedures for conducting RCTs and include strategies to address the unique issues associated with the evaluation of health IT for patient use

Adults With Cystic Fibrosis: Self-Management And Health Outcomes

This dissertation is comprised of three manuscripts for publication reporting on adults living with cystic fibrosis, self-management behaviors and health outcomes. Chapter I explores what is known about adults living with cystic fibrosis (CF) and the factors impacting their self-management, including the complexities of a health maintenance regime required for survival while integrating and balancing the realities of adulthood. The review of literature provides direction for future research and implications for adult-focused CF studies. Chapter II is a manuscript describing the characteristics of prognostic survival models utilized in adult CF research and provides an overview of their development, validation, predictive values, and prognostic outcomes. Models were evaluated for applicability to research and clinical practice and it is suggested a reliable prognostic survival model which is easily adaptable to research and practice exists. This prognostic survival model is highlighted further as the health outcomes measure utilized in Chapter III. In this chapter, the findings of a longitudinal, descriptive repeated measures study exploring improved health outcomes among adults living with cystic fibrosis who reported adherent self-management behaviors regarding their prescribed treatment plan are described. Health outcomes improved for those participants in our study who adhered to their disease modifying treatments, showing a statistically significant reduction in risk for transplant or death within the next four years. Additional inquiry into adherence levels and barriers to maintaining adherence among adults with CF is warranted

The Comprehensive Cancer Center

This open access book provides a valuable resource for hospitals, institutions, and health authorities worldwide in their plans to set up and develop comprehensive cancer care centers. The development and implementation of a comprehensive cancer program allows for a systematic approach to evidence-based strategies of prevention, early detection, diagnosis, treatment, and palliation. Comprehensive cancer programs also provide a nexus for the running of clinical trials and implementation of novel cancer therapies with the overall aim of optimizing comprehensive and holistic care of cancer patients and providing them with the best opportunity to improve quality of life and overall survival. This book's self-contained chapter format aims to reinforce the critical importance of comprehensive cancer care centers while providing a practical guide for the essential components needed to achieve them, such as operational considerations, guidelines for best clinical inpatient and outpatient care, and research and quality management structures. Intended to be wide-ranging and applicable at a global level for both high and low income countries, this book is also instructive for regions with limited resources. The Comprehensive Cancer Center: Development, Integration, and Implementation is an essential resource for oncology physicians including hematologists, medical oncologists, radiation oncologists, surgical oncologists, and oncology nurses as well as hospitals, health departments, university authorities, governments and legislators