Understanding how e-health interventions meet psychosocial needs of breast cancer patients: The pathways of influence on quality of life and cancer concerns.

OBJECTIVE: This investigation explores how using different e-health interventions facilitates positive psychosocial changes and how these changes reduce cancer concerns and improve quality of life in breast cancer patients over time. METHODS: A total of 326 breast cancer patients were randomly assigned to one of three e-health interventions: (a) Internet only, (b) the Comprehensive Health Enhancement Support System information and support services (CHESS-IS), or (c) CHESS with mentor. Proximal health outcomes such as information overload, emotional functioning, and social support were measured alongside distal outcomes like cancer concerns and quality of life. Participants completed surveys at four time points: pretest as a baseline, 6 weeks, 3 months, and 6 months. RESULTS: Both interventions were effective in improving patient health beyond Internet only but they differed in type of change mechanism and clinical benefit. The CHESS-IS enhanced proximal outcomes at 3 months through improved information competence. The CHESS with mentor intervention reduced breast cancer concerns at 6 months, mediated mainly by emotional-social competence and emotional functioning. CONCLUSIONS: Using e-health interventions like CHESS can help patients improve cancer information management skills and emotional functioning, contributing to better short-term health outcomes. Adding a human mentor can enhance the benefits of CHESS use, extending the experience among breast cancer patients. Theoretical, practical, and clinical implications of the study results are discussed.

Pilot Test of a Computer-Based System to Help Family Caregivers of Dementia Patients.

BACKGROUND: Family members absorb much of the care of dementia patients. The burden of care substantially impacts caregivers' health, further straining our healthcare system. By 2050, the incidence of Alzheimer's disease will more than double, increasing the numbers of family caregivers proportionally. Interventions that reduce their burden are needed to preserve their health as well as the viability of the healthcare system. OBJECTIVE: This paper reports on the development and feasibility testing of a computer-based system intended to improve the lives of caregivers. D-CHESS (Dementia-Comprehensive Health Enhancement Support System) allows users to obtain information, communicate with other caregivers, get help with care decisions, and share information with experts. METHOD: Thirty-one caregivers were randomly assigned to an intervention group receiving D-CHESS for 6 months or to a control group receiving a caregiving book. Surveys at 0, 2, 4, and 6 months evaluated caregiver burden, family conflict, satisfaction with decisions, social support, loneliness, anxiety, depression, and coping competence. RESULTS: Survey findings suggest D-CHESS participants may perform better on measures of social support, anxiety, loneliness, and coping competence; the groups were equivalent on caregiver burden, decision satisfaction, and depression, and the control group reported less family conflict than the intervention. D-CHESS use data suggested enhancements to system design and content to increase awareness and use of various features. CONCLUSION: This study suggests that D-CHESS has potential to positively impact family caregivers and that the system merits further development and investigation with a full-scale clinical trial.

Effects of automated smartphone mobile recovery support and telephone continuing care in the treatment of alcohol use disorder: study protocol for a randomized controlled trial.

BACKGROUND: New smartphone communication technology provides a novel way to provide personalized continuing care support following alcohol treatment. One such system is the Addiction version of the Comprehensive Health Enhancement Support System (A-CHESS), which provides a range of automated functions that support patients. A-CHESS improved drinking outcomes over standard continuing care when provided to patients leaving inpatient treatment. Effective continuing care can also be delivered via telephone calls with a counselor. Telephone Monitoring and Counseling (TMC) has demonstrated efficacy in two randomized trials with alcohol-dependent patients. A-CHESS and TMC have complementary strengths. A-CHESS provides automated 24/7 recovery support services and frequent assessment of symptoms and status, but does not involve regular contact with a counselor. TMC provides regular and sustained contact with the same counselor, but no ongoing support between calls. The future of continuing care for alcohol use disorders is likely to involve automated mobile technology and counselor contact, but little is known about how best to integrate these services. METHODS/DESIGN: To address this question, the study will feature a 2 × 2 design (A-CHESS for 12 months [yes/no] × TMC for 12 months [yes/no]), in which 280 alcohol-dependent patients in intensive outpatient programs (IOPs) will be randomized to one of the four conditions and followed for 18 months. We will determine whether adding TMC to A-CHESS produces fewer heavy drinking days than TMC or A-CHESS alone and test for TMC and A-CHESS main effects. We will determine the costs of each of the four conditions and the incremental cost-effectiveness of the three active conditions. Analyses will also examine secondary outcomes, including a biological measure of alcohol use, and hypothesized moderation and mediation effects. DISCUSSION: The results of the study will yield important information on improving patient alcohol use outcomes by integrating mobile automated recovery support and counselor contact. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02681406 . Registered on 2 September 2016.

Social support and responsiveness in online patient communities: impact on service quality perceptions.

BACKGROUND: Hospitals frequently evaluate their service quality based on the care and services provided to patients by their clinical and non-clinical staff.(1,2) However, such evaluations do not take into consideration the many interactions that patients have in online patient communities with the health-care organization (HCO) as well as with peer patients. Patients' interactions in these online communities could impact their perceptions regarding the HCO's service quality. PURPOSES: The objective of this pilot study was to evaluate the impact of social support and responsiveness that patients experience in an HCO's online community on patients' perceptions regarding the HCO's service quality. METHOD: The study data are collected from CHESS, a health-care programme (Comprehensive Health Enhancement Support System) run by the Centre for Health Enhancement System Studies at the University of Wisconsin-Madison. FINDINGS: Findings show that the social support and the responsiveness received from peer patients in the online patient communities will impact patients' perceptions regarding the service quality of the HCO even when the organizational members themselves do not participate in the online discussions. PRACTICE IMPLICATIONS: The results indicate that interactions in such HCO-provided online patient communities should not be ignored as they could translate into patients' perceptions regarding HCOs' service quality. Ways to improve responsiveness and social support in an HCO's online patient community are discussed.

Successful Organizational Strategies to Sustain Use of A-CHESS: A Mobile Intervention for Individuals With Alcohol Use Disorders.

BACKGROUND: Mobile health (mHealth) services are growing in importance in health care research with the advancement of wireless networks, tablets, and mobile phone technologies. These technologies offer a wide range of applications that cover the spectrum of health care delivery. Although preliminary experiments in mHealth demonstrate promising results, more robust real-world evidence is needed for widespread adoption and sustainment of these technologies. OBJECTIVE: Our aim was to identify the problems/challenges associated with sustained use of an mHealth addiction recovery support app and to determine strategies used by agencies that successfully sustained client use of A-CHESS. METHODS: Qualitative inquiry assessed staff perceptions about organizational attributes and strategies associated with sustained use of the mobile app, A-CHESS. A total of 73 interviews of clinicians and administrators were conducted. The initial interviews (n=36) occurred at the implementation of A-CHESS. Follow-up interviews (n=37) occurred approximately 12 and 24 months later. A coding scheme was developed and Multiuser NVivo was used to manage and analyze the blinded interview data. RESULTS: Successful strategies used by treatment providers to sustain A-CHESS included (1) strong leadership support, (2) use of client feedback reports to follow up on non-engaged clients, (3) identify passionate staff and incorporate A-CHESS discussions in weekly meetings, (4) develop A-CHESS guidelines related to client use, (5) establish internal work groups to engage clients, and (6) establish a financial strategy to sustain A-CHESS use. The study also identified attributes of A-CHESS that enhanced as well as inhibited its sustainability. CONCLUSIONS: Mobile apps can play an important role in health care delivery. However, providers will need to develop strategies for engaging both staff and patients in ongoing use of the apps. They will also need to rework business processes to accommodate the changes in communication frequency and style, learn to use app data for decision making, and identify financing mechanisms for supporting these changes.

The effect of an information and communication technology (ICT) on older adults' quality of life: study protocol for a randomized control trial.

BACKGROUND: This study investigates the use of an information and communication technology (Elder Tree) designed for older adults and their informal caregivers to improve older adult quality of life and address challenges older adults face in maintaining their independence (for example, loneliness and isolation, falling, managing medications, driving and transportation). METHODS/DESIGN: This study, an unblinded randomized controlled trial, will evaluate the effectiveness and cost of Elder Tree. Older adults who are at risk for losing their independence - along with their informal caregivers, if they name them - are randomized to two groups. The intervention group has access to their usual sources of information and communication as well as to Elder Tree for 18 months while the control group uses only their usual sources of information and communication. The primary outcome of the study is older adult quality of life. Secondary outcomes are cost per Quality-Adjusted Life Year and the impact of the technology on independence, loneliness, falls, medication management, driving and transportation, and caregiver appraisal and mastery. We will also examine the mediating effect of self-determination theory. We will evaluate the effectiveness of Elder Tree by comparing intervention- and control-group participants at baseline and months 6, 12, and 18. We will use mixed-effect models to evaluate the primary and secondary outcomes, where pretest score functions as a covariate, treatment condition is a between-subjects factor, and the multivariate outcome reflects scores for a given assessment at the three time points. Separate analyses will be conducted for each outcome. Cost per Quality-Adjusted Life Year will be compared between the intervention and control groups. Additional analyses will examine the mediating effect of self-determination theory on each outcome. DISCUSSION: Elder Tree is a multifaceted intervention, making it a challenge to assess which services or combinations of services account for outcomes in which subsets of older adults. If Elder Tree can improve quality of life and reduce healthcare costs among older adults, it could suggest a promising way to ease the burden that advancing age can place on older adults, their families, and the healthcare system. TRIAL REGISTRATION: ClinicalTrials.gov NCT02128789 . Registered on 26 March 2014.

What Influences Participation in QI? A Randomized Trial of Addiction Treatment Organizations.

Healthcare providers have increased the use of quality improvement (QI) techniques, but organizational variables that affect QI uptake and implementation warrant further exploration. This study investigates organizational characteristics associated with clinics that enroll and participate over time in QI. The Network for the Improvement of Addiction Treatment (NIATx) conducted a large cluster-randomized trial of outpatient addiction treatment clinics, called NIATx 200, which randomized clinics to one of four QI implementation strategies: (1) interest circle calls, (2) coaching, (3) learning sessions, and (4) the combination of all three components. Data on organizational culture and structure were collected before, after randomization, and during the 18-month intervention. Using univariate descriptive analyses and regression techniques, the study identified two significant differences between clinics that enrolled in the QI study (n = 201) versus those that did not (n = 447). Larger programs were more likely to enroll and clinics serving more African Americans were less likely to enroll. Once enrolled, higher rates of QI participation were associated with clinics' not having a hospital affiliation, being privately owned, and having staff who perceived management support for QI. The study discusses lessons for the field and future research needs.

Communicating advanced cancer patients' symptoms via the Internet: a pooled analysis of two randomized trials examining caregiver preparedness, physical burden, and negative mood.

BACKGROUND: Using available communication technologies, clinicians may offer timely support to family caregivers in managing symptoms in patients with advanced cancer at home. AIM: To assess the effects of an online symptom reporting system on caregiver preparedness, physical burden, and negative mood. DESIGN: A pooled analysis of two randomized trials (NCT00214162 and NCT00365963) was conducted to compare caregiver outcomes at 6 and 12 months after intervention between two randomized, unblinded groups using General Linear Mixed Modeling. Caregivers in one group (Comprehensive Health Enhancement Support System-Only) were given access to an interactive cancer communication system, the Comprehensive Health Enhancement Support System. Those in the other group (Comprehensive Health Enhancement Support System + Clinician Report) received access to Comprehensive Health Enhancement Support System plus an online symptom reporting system called the Clinician Report. Clinicians of patients in the Comprehensive Health Enhancement Support System + Clinician Report group received e-mail alerts notifying them when a symptom distress was reported over a predetermined threshold. SETTING/PARTICIPANTS: Dyads (n = 235) of advanced-stage lung, breast, and prostate cancer patients and their adult caregivers were recruited at five outpatient oncology clinics in the United States. RESULTS: Caregivers in the Comprehensive Health Enhancement Support System + Clinician Report group reported less negative mood than those in the Comprehensive Health Enhancement Support System-Only group at both 6 months (p = 0.009) and 12 months (p = 0.004). Groups were not significantly different on caregiver preparedness or physical burden at either time point. CONCLUSIONS: This study provides new evidence that by using an online symptom reporting system, caregivers may experience less emotional distress due to the Clinician Report's timely communication of caregiving needs in symptom management to clinicians.

Massachusetts's experience suggests coverage alone is insufficient to increase addiction disorders treatment.

The Affordable Care Act is aimed at extending health insurance to more than thirty million Americans, including many with untreated substance use disorders. Will those who need addiction treatment receive it once they have insurance? To answer that question, we examined the experience of Massachusetts, which implemented its own universal insurance law in 2007. As did the Affordable Care Act, the Massachusetts reform incorporated substance abuse services into the essential benefits to be provided all residents. Prior to the law's enactment, the state estimated that a half-million residents needed substance abuse treatment. Our mixed-methods exploratory study thus asked whether expanded coverage in Massachusetts led to increased addiction treatment, as indicated by admissions, services, or revenues. In fact, we observed relatively stable use of treatment services two years before and two years after the state enacted its universal health care law. Among other factors, our study noted that the percentage of uninsured patients with substance abuse issues remains relatively high--and that when patients did become insured, requirements for copayments on their care deterred treatment. Our analysis suggests that expanded coverage alone is insufficient to increase treatment use. Changes in eligibility, services, financing, system design, and policy may also be required.

Advancing recovery: implementing evidence-based treatment for substance use disorders at the systems level.

OBJECTIVE: A multisite evaluation examined the process and outcomes of Advancing Recovery, a Robert Wood Johnson Foundation initiative to overcome barriers to implementing evidence-based treatments within alcohol and drug treatment systems. METHOD: We report findings from a 3-year, mixed-method study of how treatment systems promoted two evidence-based practices: medication-assisted treatment and continuing care management. We compared outcomes and implementation strategies across 12 state/county agencies responsible for alcohol and drug treatment and their selected treatment centers. Each partnership received 2 years of financial and technical support to increase adoption of evidence-based treatments. RESULTS: Partnerships flexibly applied the Advancing Recovery model to promote the adoption of evidence-based treatments. Most sites achieved a measurable increase in the numbers of patients served with evidence-based practices, up from a baseline of virtually no use. Rates of adopting medication-based treatments were higher than those for continuing care management. Partnerships used a menu of top-down and bottom-up strategies that varied in specifics across sites but shared a general process of incremental testing and piecemeal adaptation. CONCLUSIONS: Supported partnerships between providers and policymakers can achieve wider adoption of evidence-based treatment practices. Systems change unfolds through a trial-and-error process of adaptation and political learning that is unique to each treatment system. This leads to considerable state and local variation in implementation strategies and outcomes.

Improving quality of care in substance abuse treatment using five key process improvement principles.

Process and quality improvement techniques have been successfully applied in health care arenas, but efforts to institute these strategies in alcohol and drug treatment are underdeveloped. The Network for the Improvement of Addiction Treatment (NIATx) teaches participating substance abuse treatment agencies to use process improvement strategies to increase client access to, and retention in, treatment. NIATx recommends five principles to promote organizational change: (1) understand and involve the customer, (2) fix key problems, (3) pick a powerful change leader, (4) get ideas from outside the organization, and (5) use rapid cycle testing. Using case studies, supplemented with cross-agency analyses of interview data, this paper profiles participating NIATx treatment agencies that illustrate successful applications of each principle. Results suggest that organizations can successfully integrate and apply the five principles as they develop and test change strategies, improving access and retention in treatment, and agencies' financial status. Upcoming changes requiring increased provision of behavioral health care will result in greater demand for services. Treatment organizations, already struggling to meet demand and client needs, will need strategies that improve the quality of care they provide without significantly increasing costs. The five NIATx principles have potential for helping agencies achieve these goals.

A business case for quality improvement in addiction treatment: evidence from the NIATx collaborative.

The Network for the Improvement of Addiction Treatment (NIATx) promotes treatment access and retention through a customer-focused quality improvement model. This paper explores the issue of the "business case" for quality improvement in addiction treatment from the provider's perspective. The business case model developed in this paper is based on case examples of early NIATx participants coupled with a review of the literature. Process inefficiencies indicated by long waiting times, high no-show rates, and low continuation rates cause underutilization of capacity and prevent optimal financial performance. By adopting customer-focused practices aimed at removing barriers to treatment access and retention, providers may be able to improve financial performance, increase staff retention, and gain long-term strategic advantage.

Disseminating quality improvement: study protocol for a large cluster-randomized trial.

BACKGROUND: Dissemination is a critical facet of implementing quality improvement in organizations. As a field, addiction treatment has produced effective interventions but disseminated them slowly and reached only a fraction of people needing treatment. This study investigates four methods of disseminating quality improvement (QI) to addiction treatment programs in the U.S. It is, to our knowledge, the largest study of organizational change ever conducted in healthcare. The trial seeks to determine the most cost-effective method of disseminating quality improvement in addiction treatment. METHODS: The study is evaluating the costs and effectiveness of different QI approaches by randomizing 201 addiction-treatment programs to four interventions. Each intervention used a web-based learning kit plus monthly phone calls, coaching, face-to-face meetings, or the combination of all three. Effectiveness is defined as reducing waiting time (days between first contact and treatment), increasing program admissions, and increasing continuation in treatment. Opportunity costs will be estimated for the resources associated with providing the services. OUTCOMES: The study has three primary outcomes: waiting time, annual program admissions, and continuation in treatment. Secondary outcomes include: voluntary employee turnover, treatment completion, and operating margin. We are also seeking to understand the role of mediators, moderators, and other factors related to an organization's success in making changes. ANALYSIS: We are fitting a mixed-effect regression model to each program's average monthly waiting time and continuation rates (based on aggregated client records), including terms to isolate state and intervention effects. Admissions to treatment are aggregated to a yearly level to compensate for seasonality. We will order the interventions by cost to compare them pair-wise to the lowest cost intervention (monthly phone calls). All randomized sites with outcome data will be included in the analysis, following the intent-to-treat principle. Organizational covariates in the analysis include program size, management score, and state. DISCUSSION: The study offers seven recommendations for conducting a large-scale cluster-randomized trial: provide valuable services, have aims that are clear and important, seek powerful allies, understand the recruiting challenge, cultivate commitment, address turnover, and encourage rigor and flexibility. TRIAL REGISTRATION: ClinicalTrials. govNCT00934141.

Using action research to implement an integrated pediatric asthma case management and eHealth intervention for low-income families.

Asthma case management and education programs improve pediatric asthma outcomes, but designing rigorous randomized controlled studies that accurately measure effects while encouraging parent participation is challenging. This is especially so for low-income African American families, who face significantly more severe asthma and social stress than their middle-class counterparts. Action research can help health education researchers negotiate between the elegant and complex designs favored by scientists with the real-life challenges of recruitment, implementation, and retention. This article discusses how a multidisciplinary team uses action research concepts to continuously adjust originally proposed protocols through the planning and implementation phases to encourage participation in a year-long randomized controlled trial of a program that combines telephone asthma case management and comprehensive online asthma education. As a result of these efforts, a higher proportion of low-income African American families are recruited into the study than originally proposed.

Making "stone soup": improvements in clinic access and retention in addiction treatment.

BACKGROUND: The Network for Improvement of Addiction Treatment (NIATx) provides 39 treatment organizations with collaborative learning opportunities and technical support to reduce waiting time between the first request for service and the first treatment session, reduce the number of patients who do not keep an appointment (no-shows), increase the number of people admitted to treatment, and increase continuation from the first through the fourth treatment session. ACADIA'S STORY-TREATMENT ON DEMAND: Given capacity constraints, only 25% of the clients scheduled for outpatient care at Acadia Hospital (Bangor, Maine) showed up for their assessment appointments, and only 19% made it into treatment. A variety of changes were introduced, including increasing staff availability to provide clients with assessments immediately on arrival (at 7:30 A.M.), establishing a clinician pool to handle client overflow, and allowing for same-day admission to intensive outpatient or chemical dependency services. These process improvements reduced the time from first contact to the first treatment session from 4.1 to 1.3 days (68%), reduced client no-shows, and increased continuation in treatment and transfers across levels of care. DISCUSSION: The successes experienced by organizations in the NIATx initiative should be useful for implementing change in other fields of service delivery.

An exploratory study of predictors of participation in a computer support group for women with breast cancer.

This study examined what characteristics predict participation in online support groups for women with breast cancer when users are provided free training, computer hardware, and Internet service removing lack of access as a barrier to use. The only significant difference between active and inactive participants was that active users were more likely at pretest to consider themselves active participants in their healthcare. Among active participants, being white and having a higher energy level predicted higher volumes of writing. There were also trends toward the following characteristics predictive of a higher volume of words written, including having a more positive relationship with their doctors, fewer breast cancer concerns, higher perceived health competence, and greater social/family well-being. Implications for improving psychosocial interventions for women with breast cancer are discussed, and future research objectives are suggested.

Helping adolescents quit smoking:a needs assessment of current and former teen smokers.

This study compared the survey responses of 280 current and former adolescent smokers for what they perceived would be helpful (or what had helped) in quitting smoking. The survey was developed from focus groups and was structured using Prochaska and DiClementes Stages of Change health behavior framework. Results showed that former smokers and current smokers in the preparation stage of change shared beliefs about the importance of interpersonal support, those who were contemplating a quit decision worried about obstacles and internal issues, and current smokers not thinking about quitting focused on external rewards. The findings that significant differences exist based on the adolescent smokers Stage of Change imply that this framework can be appropriately applied to this context.

Needs assessment for cancer patients and their families.

BACKGROUND: The assessment of needs for cancer care is a critical step in providing high quality care and achieving cancer patients' and families' satisfaction. Instruments can be used to assess needs and guide cancer care planning. This study discusses the importance of the needs assessment, relationships between needs, satisfaction and quality of life; and reviews the assessment instruments of needs experienced by cancer patients and their families. METHODS: A systematic search was conducted in MEDLINE and CANCERLIT data bases. Instruments were evaluated based on their conceptual and measurement models as well as their demonstrated reliability and validity. The authors also sought information pertaining to instruments' burden of administration and responsiveness. Measures compromised by a lack of published psychometric description were not included. RESULTS: This search identified 17 patient needs assessment instruments and seven family needs assessment instruments. The development and psychometric proprieties of most of these instruments were well documented. However, data on their responsiveness and burden of administration were scarce. CONCLUSIONS: Each selected instrument meets some but not all of our criteria for validity, reliability, responsiveness and burden. It is questionable whether any instrument can be developed meeting all the requirements. However, there is still a need to continue researching and developing needs assessment instruments leading to effective intervention and improving quality of cancer care.

Assessing the unmet information, support and care delivery needs of men with prostate cancer.

This study identified the key Unmet Needs of men with localized prostate cancer. A series of Nominal Groups were used to identify needs, from which a 135-item survey was developed to assess both the Importance and Unmet Need of each item. An Importance-Weighted Unmet Need score was calculated for each item, incorporating both the Importance and the degree to which the need was unmet. Surveys (n=500) were distributed in four geographically distinct areas, with a response rate of 46%. Respondents were 90% Caucasian, 80% married, with a mean age of 66 years, and mean education of 14 years. Care delivery needs were most important and least unmet, while Support needs were least important and most unmet. However, when degree to which needs were unmet was weighted by Importance, information needs had the highest Importance-Weighted Unmet Need scores. The greatest Unmet Needs for information were in knowledge of recurrence issues and in side effects of the illness and its treatment.