Kirsten Smillie

The effect of weekly short message service communication on patient retention in care in the first year after HIV diagnosis: study protocol for a randomised controlled trial (WelTel Retain)

Introduction Interventions to improve retention in care after HIV diagnosis are necessary to optimise the timely initiation of antiretroviral therapy (ART) and HIV/AIDS control outcomes. Widespread mobile phone use presents new opportunities to engage patients in care. A randomised controlled trial (RCT), WelTel Kenya1, demonstrated that weekly text messages led to improved ART adherence and viral load suppression among those initiating ART. The aim of this study was to determine whether the WelTel intervention is an effective and cost-effective method of improving retention in care in the first year of care following HIV diagnosis. Methods and analysis WelTel Retain is an open, parallel group RCT that will be conducted at the Kibera Community Health Centre in Nairobi, Kenya. Over a 1-year period, we aim to recruit 686 individuals newly diagnosed with HIV who will be randomly allocated to an intervention or control arm (standard care) at a 1:1 ratio. Intervention arm participants will receive the weekly WelTel SMS ‘check-in’ to which they will be instructed to respond within 48 h. An HIV clinician will follow-up and triage any problems that are identified. Participants will be followed for 1 year, with a primary endpoint of retention in care at 12 months. Secondary outcomes include retention in stage 1 HIV care (patients return to the clinic to receive their first CD4 results) and timely ART initiation. Cost-effectiveness will be analysed through decision-analytic modelling. Ethics and dissemination Ethical approval has been obtained from the University of British Columbia and the African Medical and Research Foundation. This trial will test the effectiveness and cost-effectiveness of the WelTel intervention to engage patients during the first year of HIV care. Trial results and economic evaluation will help inform policy and practice on the use of WelTel in the early stages of HIV care. Trial registration ClinicalTrials.gov NCT01630304.

A Qualitative Study Investigating the Use of a Mobile Phone Short Message Service Designed to Improve HIV Adherence and Retention in Care in Canada (WelTel BC1)

&NA; Patient engagement in care and adherence to medication are critical to achieving the full benefits of antiretroviral therapy (ART) among people with HIV infection. A randomized controlled trial in Kenya, WelTelKenya1, showed that an interactive mobile phone text‐messaging intervention can improve adherence and viral load suppression. We conducted a pilot study to adapt the WelTel intervention for HIV‐infected clients (n = 25) at an HIV clinic in Vancouver, British Columbia. Between April and June 2012, we recruited five participants from five groups: youth (14–24 years), mature (≥50 years), English as a second language, remote (≥3 hours travel time to clinic), and nonsuppressed (CD4+ T cell count <200 cells/mm3 and viral load ≥250 copies/mL on two consecutive occasions). Participants described the intervention as a useful way to communicate with health care providers, thus increasing the ability to access services, report side effects, and attend appointments.

Mobile health for early retention in HIV care: a qualitative study in Kenya (WelTel Retain)

Many people newly diagnosed with HIV are lost to follow-up before timely initiation of antiretroviral therapy (ART). A randomised controlled trial (RCT), WelTel Kenya1, demonstrated the effectiveness of the WelTel text messaging intervention to improve clinical outcomes among patients initiating ART. In preparation for WelTel Retain, an RCT that will evaluate the effect of the intervention to retain patients in care immediately following HIV diagnosis, we conducted an informative qualitative study with people living with HIV (n = 15) and healthcare providers (HCP) (n = 5) in October 2012. Study objectives included exploring the experiences of people living with HIV who have attempted to engage in HIV care, the use of cell phones in everyday life, and perceptions of communicating via text message with HCP. Participants were recruited through convenience sampling. Semi-structured, qualitative interviews were conducted and recorded, transcribed verbatim and analysed using NVivo software. Analysis was guided by the Theory of Reasoned Action and the Technology Acceptance Model. Results indicate that while individuals have many motivators for engaging in care after diagnosis, structural and individual barriers including poverty, depression and fear of stigma prevent them from doing so. All participants had access to a mobile phone, and most were comfortable communicating through text messages, or were willing to learn. Both people living with HIV and HCP felt that increased communication via the text messaging intervention has the potential to enable early identification of problems, leading to timely problem solving that may improve retention and engagement in care during the first year after diagnosis.

Access to Medical and Supportive Care for Rural and Remote Cancer Survivors in Northern British Columbia

BACKGROUND Rural cancer survivors (RCS) potentially have unique medical and supportive care experiences when they return to their communities posttreatment because of the availability and accessibility of health services. However, there is a limited understanding of cancer survivorship in rural communities. PURPOSE The purpose of this study is to describe RCS experiences accessing medical and supportive care postcancer treatment. METHODS Interviews and focus groups were conducted with 52 RCS residing in northern British Columbia, Canada. The data were analyzed using qualitative content analysis methods. RESULTS General Population RCS and First Nations RCS experienced challenges accessing timely medical care close to home, resulting in unmet medical needs. Emotional support services were rarely available, and, if they did exist, were difficult to access or not tailored to cancer survivors. Travel and distance were barriers to medical and psychological support and services, not only in terms of the cost of travel, but also the toll this took on family members. Many of the RCS lacked access to trusted and useful information. Financial assistance, for follow-up care and rehabilitation services, was rarely available, as was appropriate employment assistance. CONCLUSION Medical and supportive care can be inaccessible, unavailable, and unaffordable for cancer survivors living in rural northern communities.

The effect of weekly text-message communication on treatment completion among patients with latent tuberculosis infection: study protocol for a randomised controlled trial (WelTel LTBI)

Introduction Interventions to improve adherence to treatment for latent tuberculosis infection (LTBI) are necessary to improve treatment completion rates and optimise tuberculosis (TB) control efforts. The high prevalence of cell phone use presents opportunities to develop innovative ways to engage patients in care. A randomised controlled trial (RCT), WelTel Kenya1, demonstrated that weekly text messages improved antiretroviral adherence and clinical outcomes among patients initiating HIV treatment. The aim of this study is to determine whether the WelTel intervention can improve treatment completion among patients with LTBI and to evaluate the interventions cost-effectiveness. Methods and analysis This open, two-site, parallel RCT (WelTel LTBI) will be conducted at TB clinics in Vancouver and New Westminster, British Columbia, Canada. Over 2 years, we aim to recruit 350 individuals initiating a 9-month isoniazid regimen. Participants will be randomly allocated to an intervention or control (standard care) arm in a 1:1 ratio. Intervention arm participants will receive a weekly text-message ‘check-in’ to which they will be asked to respond within 48 h. A TB clinician will follow-up instances of non-response and problems that are identified. Participants will be followed until treatment completion (up to 12 months) or discontinuation. The primary outcome is self-reported treatment completion (taking ≥80% of doses within 12 months). Secondary outcomes include daily adherence (percentage of days participants used medication as prescribed) and time to treatment completion. Patient satisfaction with the intervention will be evaluated, and the interventions cost-effectiveness will be analysed through decision-analytic modelling. Ethics and dissemination Ethical approval has been obtained from the University of British Columbia. This trial will test the efficacy and cost-effectiveness of the WelTel intervention to improve treatment completion among patients with LTBI. Trial results and economic evaluation will help inform policy and practice on the use of WelTel in this population. Trial registration number ClinicalTrials.gov NCT01549457.

A call for action in survivorship research and care

The term “cancer survivor” has been used to convey various meanings over time. When cancer was considered incurable, “survivor” described family members who had lost a loved one to cancer 1. With time, as treatments improved, “survivor” referred to individuals who remained cancer-free for a minimum of 5 years 2,3. The U.S. National Cancer Institute’s Office of Cancer Survivorship definition states that an “individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life” 4. Most commonly, survivorship is described as a distinct phase in the cancer trajectory that occurs between the end of primary treatment and recurrence or end of life 5,6. The number of cancer survivors has risen considerably in recent decades as a result of advances in prevention, screening, and treatment. Currently in Canada, close to 1 million people are living as cancer survivors 7. Today, approximately 65% of adults and 80% of children diagnosed with cancer are expected to live at least 5 years post diagnosis. Approximately 1 in 46 Canadians (2.2%) who were diagnosed with one or more primary invasive cancers in 1995 were alive 10 years later on January 1, 2005 7. As survival rates improve and the length of survival time increases, developing a national research agenda in Canada to inform health care service delivery to survivors and to foster collaboration between stakeholders is essential 8. Canada, the United States, the United Kingdom, and more recently, Australia have been active in establishing cancer survivorship as an area of priority in cancer control. Although realized somewhat differently in each country, some shared priorities have been identified, including the development of effective care models and interventions; the investigation of long-term effects of cancer diagnosis and treatment on patients, their families, and caregivers; and the needs and characteristics of unique or disadvantaged populations 9,10. Translating those priorities into an active research agenda that will inform best practice and lead to improved care for survivors is the logical next step. And yet achieving this goal poses many challenges given the relatively small Canadian research capacity in this area. El Ansari et al. 11 suggested that, to accelerate research activity, research consortiums deserve attention by funding bodies. We agree, and we propose the establishment of a consortium to advance needed work in cancer survivorship in Canada. A research consortium has been described as a group of individuals or organizations that works collaboratively with respect to a particular theme or funding strategy 11. At both the national and international levels, consortia have been reported in cancer prevention 12, quality of life 13, and epidemiology 14, among other applications. The Lance Armstrong Foundation created a network of eight comprehensive cancer centers, the LiveStrong Survivorship Centers of Excellence Network 15, but we know of no efforts to create a research consortium in the field of survivorship. Consortia would seem to be an ideal approach where research capacity is limited and where broad interest in a particular research theme area has been apparent. That statement would appear to describe the situation of the psychosocial aspects of cancer survivorship in Canada.

A structured approach to knowledge exchange: Understanding the implementation of a cancer survivor program

PURPOSE The purpose of this research was to describe the application of a model of knowledge exchange, the Knowledge Exchange-Decision Support (KE-DS) Model, to the Canadian pilot of Cancer Transitions, a psychosocial program for cancer survivors. METHOD We compared and contrasted the program planning and implementation processes across three diverse sites offering Cancer Transitions. The KE-DS Model guided the collection and analysis of observations and written data according to specific model components. RESULTS The use of the KE-DS Model highlighted four pertinent factors that influenced knowledge exchange during planning and implementation processes of this psychosocial program. First, the geographic diversity of where these programs were offered affected strategies for program promotion, recruitment and means of access. Second, the variation of the professional and organizational capacity of the three sites was critical to program planning and delivery. Third, cultural values and norms shaped each sites approach. Fourth, the KE-DS Model identified populations who were included and excluded from participation. CONCLUSIONS The KE-DS Model was useful in elucidating the processes of knowledge exchange during the planning and implementing of an intervention for survivor care. This process information will inform future offerings of Cancer Transitions.

Identifying Barriers and Facilitators of 13 mHealth Projects in North America and Africa: Protocol for a 5-Year Implementation Science Study

Background Although many mHealth interventions have shown efficacy in research, few have been effectively implemented and sustained in real-world health system settings. Despite this programmatic gap, there is limited conclusive evidence identifying the factors that affect the implementation and successful integration of mHealth into a health system. Objective The aim of this study is to examine the individual, organizational, and external level factors associated with the effective implementation of WelTel, an mHealth intervention designed to support outpatient medication adherence and engagement in care in Africa and North America. Methods We will adopt the Consolidated Framework for Implementation Research (CFIR) constructs for evaluation of mHealth implementation including a scoring and monitoring system. We will apply the adapted tool to identify facilitators and barriers to implementation of the WelTel mHealth intervention in order to determine how the technology platform is perceived, diffused, adapted, and used by different mHealth project teams and health system actors in Africa and North America. We will use a mixed-methods approach to quantitatively test whether the factors identified in the CFIR framework are associated with the successful uptake of the mHealth intervention toward implementation goals. We will triangulate these data through interviews and focus group discussion with project stakeholders, exploring factors associated with successful implementation and sustainment of these interventions. Results The development of the customized CFIR is finalized and currently is in pilot testing. The initial results of the use of the tool in those 13 implementations will be available in 2019. Continuous conference and peer- reviewed publications will be published in the coming years. Conclusions The results of this study will provide an in-depth understanding of individual, organizational, and external level factors that influence the successful implementation of mHealth in different health systems and geographic contexts over time. Via the tool’s unique scoring system connected to qualitative descriptors, these data will inform the most critical implementation targets and contribute to the tailoring of strategies that will assist the health system in overcoming barriers to implementation, and ultimately, improve treatment adherence and engagement in care. Registered Report Identifier RR1-10.2196/9633

The effect of text messaging on latent tuberculosis treatment adherence: a randomised controlled trial

There is limited high-quality evidence available to inform the use of text messaging to improve latent tuberculosis infection (LTBI) treatment adherence. We performed a parallel, randomised controlled trial at two sites to assess the effect of a two-way short message service on LTBI adherence. We enrolled adults initiating LTBI therapy from June 2012 to September 2015 in British Columbia, Canada. Participants were randomised in a 1:1 ratio to standard LTBI treatment (control) or standard LTBI treatment plus two-way weekly text messaging (intervention). The primary outcome was treatment completion, defined as taking ≥80% prescribed doses within 12 months (isoniazid) or 6 months (rifampin) of enrolment. The trial was unblinded except for the data analyst. A total of 358 participants were assigned to the intervention (n=170) and control (n=188) arms. In intention-to-treat analysis, the proportion of participants completing LTBI therapy in the intervention and control arms was 79.4% and 81.9%, respectively (RR 0.97, 95% CI 0.88–1.07; p=0.550). Results were similar for pre-specified secondary end-points, including time-to-completion of LTBI therapy, completion of >90% of prescribed LTBI doses and health-related quality of life. Weekly two-way text messaging did not improve LTBI completion rates compared to standard LTBI care; however, completion rates were high in both treatment arms. Weekly two-way text messaging did not improve latent tuberculosis treatment completion in a high-resource setting http://ow.ly/9gLA30hzSlE

Participation in a mobile health intervention trial to improve retention in HIV care: does gender matter?

Background To be consistent with the United Nations’ sustainable development goals on gender equality, mobile health (mHealth) programmes should aim to use communications technology to promote the empowerment of women. We conducted a pre-trial analysis of data from the WelTel Retain study on retention in HIV care to assess gender-based differences in phone access, phone sharing and concerns about receiving text messages from a healthcare provider. Methods Between April 2013–June 2015, HIV-positive adults were screened for trial participation at two clinics in urban slums in Nairobi, Kenya. Proportions of men and women excluded from the trial due to phone-related criteria were compared using a chi-square test. Gender-based differences in phone sharing patterns and concerns among trial participants were similarly compared. Results Of 1068 individuals screened, there was no difference in the proportion of men (n = 39/378, 10.3%) and women (n = 71/690, 10.3%) excluded because of phone-related criteria (p-value = 0.989). Among those who shared their phone, women (n = 52/108, 48.1%) were more likely than men (n = 6/60, 10.0%) to share with other non-household and household members (p < 0.001). Few participants had concerns about receiving text messages from their healthcare provider; those with concerns were all women (n = 6/700). Discussion In this study, men and women were equally able to participate in a trial of an mHealth intervention. Equitable access in these urban slums may indicate the ‘gender digital divide’ is narrowing in some settings; however, gender-specific phone sharing patterns and concerns regarding privacy must be fully considered in the development and scale-up of mHealth programmes.