Diabetes‐related complications: Which research topics matter to diverse patients and caregivers?

Background

Diabetes is a chronic disease with increasing prevalence worldwide. Although research has improved its treatment and management, little is known about which research topics matter to people living with diabetes, particularly among under‐represented groups.

Objectives

To explore the importance of research topics among a diverse range of people living with any type of diabetes or caring for someone living with any type of diabetes.

Methods

We used a convergent mixed‐method design with quantitative and qualitative aspects. We surveyed a national sample of people living with diabetes and caregivers of people with diabetes, asking them to rate the importance of 10 predetermined important research topics. We also held three focus groups in two major cities to explore research concerns of people who are under‐represented in research.

Results

469 adults (57% men, 42% women) in Canada completed the online survey, indicating that all 10 areas of research mattered to them, with the highest ratings accorded to preventing and treating kidney, eye and nerve complications. Fourteen individuals participated in three focus groups and similarly noted the importance of research on those three complications. Additionally, focus group participants also noted the importance of research around daily management. No new topics were identified.

Conclusions

This study confirmed the importance of research topics among a population of people living with or caring for someone with diabetes. Findings from this study were used to inform the vision for Diabetes Action Canada—a pan‐Canadian Strategy for Patient‐Oriented Research (SPOR) Network on diabetes and its complications.     

The long-term efficacy of three psychotherapies for anorexia nervosa: a randomized, controlled trial

Objective:

To evaluate the long‐term efficacy of three psychotherapies for anorexia nervosa.

Method:

Participants were women with broadly defined anorexia nervosa who had participated in a RCT comparing specialized psychotherapies (cognitive behavior therapy, CBT, and interpersonal psychotherapy, IPT) with a control condition (specialist supportive clinical management, SSCM), and attended long‐term follow‐up assessment (mean 6.7 years ± 1.2).

Results:

Forty three of the original sample of 56 women participated in long‐term follow‐up assessment (77%). No significant differences were found on any pre‐selected primary, secondary or tertiary outcome measures among the three psychotherapies at long‐term follow‐up assessment. Significantly different patterns of recovery were identified for the psychotherapies across time on the primary global outcome measure. Although SSCM was associated with a more rapid response than IPT, by follow‐up all three treatments were indistinguishable.

Discussion:

Potential implications for the timing of interventions to improve treatment response in anorexia nervosa are critically examined. © 2010 by Wiley Periodicals, Inc. Int J Eat Disord 2010     

Assessing the experiences of intra-uterine device users in a long-term conflict setting: a qualitative study on the Thailand-Burma border

Background

In Burma, severe human rights violations, civil conflict, and the persecution of ethnic and linguistic minority populations has resulted in the displacement of millions of people, many of whom now reside as internally displaced populations (IDPs) in Eastern Burma or in Thailand as refugees or undocumented migrants. Use of the intra-uterine device (IUD), a non-user dependent and highly reliable method of long acting reversible contraception, has the potential to make a significant impact on reproductive health in this protracted conflict setting.

Objectives

This qualitative study aimed to understand Burmese women’s experiences with and perceptions of the IUD and identify avenues for improving contraceptive service delivery along the Thailand-Burma border.

Methods

In the summer of 2013, we conducted in-person in-depth open-ended interviews with 31 women who obtained IUDs from a clinic along the border. We conducted a content and thematic analysis of these data using both a priori (pre-determined) and emergent codes and inductive techniques.

Results

Women’s experiences with the IUD are overwhelmingly positive and the experiences of friends and family impact use of the device. Financial considerations and access to reproductive health facilities also shape the use of the IUD in this region. The IUD is rare along the Thailand-Burma border and misinformation about this method of contraception is pervasive.

Conclusion

Our findings suggest that this modality of contraception is culturally acceptable and may be able to address structural barriers to reproductive health services along the Thailand-Burma border. Ensuring that information provided by health care providers and among peer groups is evidence-based, a full range of contraceptive methods is available, and adoption of an IUD is affordable are priorities for expanding access to reproductive health services in this setting.     

Peer Reviewed: Profiles of 800,000 Users of the National Cancer Institute’s Cancer Information Service Since the Debut of Online Assistance, 2003-2008

Introduction

In 2002, the Cancer Information Service (CIS) of the National Cancer Institute added to its toll-free telephone number 2 choices of media for access to cancer information specialists: e-mail and a proprietary online instant messaging service called LiveHelp. We sought to determine how new media users differ from telephone callers and the US population in general.

Methods

During the 6 years since the new media were added, we collected data from more than 800,000 people who contacted CIS.

Results

Telephone calls to CIS declined while the number of LiveHelp and e-mail inquiries steadily increased. People who contacted CIS by telephone and LiveHelp were predominantly white and female and, compared with the general population, were relatively well educated. LiveHelp users were significantly younger, more educated, and more affluent than telephone callers. CIS clients asked most frequently for general cancer site information, information about treatment and side effects management, screening programs, and economic assistance. Telephone callers most often asked about breast cancer.

Conclusion

The Internet has introduced new sources of health information and possibly a new type of health information seeker. With LiveHelp and e-mail, CIS is poised to meet the needs of the digital health consumer and also the traditional telephone caller.     

It’s hard work,but it’s worth it: the task of keeping children adherent to isoniazid preventive therapy

Setting:

Isoniazid preventive therapy (IPT) offers children protection against tuberculosis (TB), but it has been difficult to implement, particularly in developing countries.

Objective:

To understand what encourages or inhibits children from adhering to IPT.

Design:

In-depth interviews were conducted with two parents of children adherent to IPT and two staff members from three primary health care clinics in high TB prevalence communities. Themes explored were knowledge and attitudes towards IPT, problems in accessing and adhering to treatment, and community responses.

Results:

Parents administering treatment valued it positively, realised their children’s risk of TB, and were positive about the clinic. Nurses acknowledged that resistance to treatment remained, with some parents not wanting to acknowledge risk nor willing to make the effort for their children; there was also considerable misinformation about IPT. Clinic nurses acknowledged problems of staff shortages, lengthy waiting times and conflict between staff and community members. Adherence was affected by social problems, stigma about TB and its link to the human immunodeficiency virus, and the extended treatment period.

Conclusion:

Parents who maintained adherence to the IPT regimen showed that it was possible even in very difficult circumstances. Further effort is required to improve some of the clinic services, correct misinformation, reduce stigma and provide support to parents.     

Interpersonal psychotherapy versus treatment as usual for PTSD and depression among Sichuan earthquake survivors: a randomized clinical trial

Background

Without effective treatment, PTSD and depression can cause persistent disability in disaster-affected populations.

Methods

Our objective was to test the efficacy of Interpersonal Psychotherapy (IPT) delivered by trained local personnel compared with treatment as usual (TAU) for Posttraumatic Stress Disorder (PTSD) and Major Depressive Disorder (MDD) among adults affected by the Sichuan 2008 earthquake. A small randomized controlled trial of IPT?+?TAU versus TAU alone was delivered by local mental health personnel in Shifang, China. Between July 2011 and January 2012, 49 adults?≥?18 years with PTSD, MDD or both were enrolled and randomized to 12 weekly sessions of IPT?+?TAU (27) or TAU (22) alone x 12 weeks. IPT was then offered to the TAU group. Unblinded follow up assessments were conducted at three and six months. IPT was a 12 session, weekly one hour treatment delivered by local personnel who were trained and supervised in IPT. TAU was continuation of prescribed psychotropic medication (if applicable) and crisis counseling, as needed.Main Outcome(s) and Measures (s): Clinician Administered PTSD Scale (CAPS) PTSD diagnosis; Structured Clinical Interview for DSM-IV (SCID) for MDD diagnosis. Secondary measures included PTSD/depression symptoms, interpersonal conflict/anger, social support, self-efficacy and functioning.

Results

Using an intent-to-treat analysis, 22 IPT?+?TAU and 19 TAU participants were compared at three months post-baseline. A significantly greater reduction of PTSD and MDD diagnoses was found in the IPT group (51.9%, 30.1%, respectively) versus the TAU group (3.4%, 3.4%, respectively). Despite the small sample, the estimates for time-by-condition analyses of target outcomes (2.37 for PTSD (p?=?.018) and 1.91 for MDD (p?=?.056)) indicate the improvement was better in the IPT?+?TAU condition versus the TAU group. Treatment gains were maintained at 6 months for the IPT group. A similar treatment response was observed in the TAU group upon receipt of IPT.

Conclusions

This initial study shows that IPT is a promising treatment for reducing PTSD and depression, the two major mental health disorders affecting populations surviving natural disaster, using a design that builds local mental health care capacity.

Trial Registration

ClinicalTrials.Gov number, NCT01624935.

     

Changes to the law on consent in South Africa: implications for school-based adolescent sexual and reproductive health research

Background

The risk of acquiring tuberculosis by People living with HIV (PLHIV) could significantly be reduced through provision of isoniazid preventive therapy (IPT). In Ethiopia, it is neither practiced well nor researched in depth. Our objective was to assess IPT provision and awareness among PLHIV in Addis Ababa City Administration.

Methods

Between February 2008 and May 2008, a cross sectional facility-based survey was conducted by exit interview of 406 PLHIV from six health facilities. The findings were analyzed and described in this report.

Results

The proportion of PLHIV ever had been provided with IPT were 74 of 231 TB free PLHIV (32.0%) and the proportion of having information about IPT among study participants was 29.8%. Females were about two times more informed about the provision of IPT in their health facilities than males [AOR (95%CI): 2.18 (1.31-3.61)].

Conclusions

We conclude that the practice of provision of IPT for PLHIV is high, but there is room for improvement. Provision of INH for TB free PLHIV has to be strengthened with better diagnostic facilities to certainly rule out active TB cases.     

The impact of new screen-detected and previously known type 2 diabetes on health-related quality of life: a population-based study in Qingdao,China

Aims

To examine and compare health-related quality of life (HRQoL) in people with previously known diabetes, new screen-detected asymptomatic diabetes and people without diabetes.

Methods

HRQoL of 4,613 individuals who participated in a population-based cross-sectional diabetes survey in Qingdao, China, in 2009, was assessed using the 15D instrument. A Tobit regression model to estimate the effects of diabetes on HRQoL separate from effects of other health determinants was constructed.

Results

Among the surveyed population, 220 (4.8 %) individuals had previously known diabetes and 531 (11.5 %) individuals had new screen-detected diabetes, defined by fasting plasma glucose ≥7.0 mmol/l and/or 2-h plasma glucose ≥11.1 mmol/l. The age-, gender-, and BMI-adjusted mean 15D score of people without diabetes, with new screen-detected diabetes, and previously known diabetes was 0.975, 0.975, and 0.964, respectively, for urban and 0.971, 0.972, and 0.960, respectively, for rural participants. HRQoL overall and on all the dimensions (p < 0.05) except for hearing, eating, and speech was worse in the people with previously known diabetes compared to those with new screen-detected diabetes and those without diabetes. Compared to people without diabetes, people with new screen-detected diabetes were worse off on the dimension of usual activities (p < 0.05). After adjusting for comorbid diseases and other confounders, the impact of diabetes on reduced HRQoL was diminished.

Conclusion

Health-related quality of life was impaired in people with previously known diabetes who had co-morbid conditions, but was largely unaltered in people with newly detected asymptomatic diabetes as compared to people without diabetes.     

Do disabilities impede the use of information and communication technologies? Findings of a repeated cross-sectional study – 2003-2015

Background

The current research focuses on trends of Internet adoption and digital uses among people with disabilities over a thirteen-year period.

Methods

The study is based on data elicited from a repeated cross-sectional study collected by means of Annual Social Surveys conducted by Israel’s Central Bureau of Statistics between 2003 and 2015. The sample included 95,145 respondents, among them 22,290 respondents with disabilities.

Results

The rate of Internet access and digital uses increased continuously among disabled people; however the gap between them and the population without disabilities was preserved. We found that Internet use depends on a number of socio-economic characteristic. Socio-demographic variables were much more powerful in predicting Internet use vs non-use among the total population, compared to predicting digital uses among Internet users.

Conclusions

Our findings make it possible to identify disadvantaged groups in which disability intersects with low rates of Internet adoption and belonging to unprivileged groups: Arabs, the religious, the elderly, lower SES individuals. The effects of most of these variables did not change in the period under study. Generally, we recommend finding a way to promote courses that focus on promoting digital literacy in general and eHealth literacy in particular in small groups of people of similar age, digital skill level and motor / health problems. Considering the high representation of Arabs among people with disabilities and lower rates of Internet adoption and use among Arabs, it is recommended that efforts continue to increase the scope and quality of Arabic language content published on Israeli eHealth sites. In order to diminish income-based digital divide we recommend providing publicly accessible free information technologies, for example, in community clubs, senior citizen clubs, and independent- and assisted- living projects for the disabled.

     

Routine programmatic delivery of isoniazid preventive therapy to children in Cape Town,South Africa

Setting:

Fourteen primary health care facilities in Cape Town, South Africa.

Objective:

To determine the proportion and characteristics of infectious adult tuberculosis (TB) cases that identify children aged <5 years who qualify for isoniazid preventive therapy (IPT), and to determine the proportion of children who initiate and complete IPT.

Design:

A retrospective clinical record review conducted as a stratified cluster survey.

Results:

Of 1179 records of infectious adult cases, 33.3% had no documentation of contacts. Of the remaining 786 records, 525 contacts aged <5 years were identified, representing 0.7 child contacts per infectious adult case. Older age, male, human immunodeficiency virus (HIV) positive, smear-negative and retreatment TB cases were all associated with no documentation of contacts. Of the 525 child contacts identified, less than half were screened for TB, 141 initiated IPT and 19 completed it.

Conclusion:

Less than 67% of infectious TB case records had documentation of contacts. Younger, female, HIV-negative and new smear-positive TB cases were more likely to have had contacts identified. Less than 14% of children already initiated on IPT completed 6 months of treatment.     

Economic hardship associated with managing chronic illness: a qualitative inquiry

Background  

Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness.     

Attitudes towards mental health,mental health research and digital interventions by young adults with type 1 diabetes: A qualitative analysis

Background

Young people with type 1 diabetes are at increased risk of mental disorders. Whereas treatment need is high, difficulty recruiting young people with type 1 diabetes into psychosocial studies complicates development, testing and dissemination of these interventions.

Objective

Interviews with young adults with type 1 diabetes were conducted to examine attitudes towards mental health and mental health research, including barriers and motivators to participation in mental health studies and preferred sources of mental health support. The interviews were audio‐taped, transcribed and evaluated via thematic analysis.

Setting and participants

Young adults with type 1 diabetes were recruited via social media channels of 3 advocacy organizations. A total of 31 young adults (26 females and 5 males) with an average age of 22 years were interviewed between October 2015 and January 2016.

Results

Participants were largely unaware of their increased vulnerability to common mental health problems and knew little about mental health research. Major barriers to participation included perceived stigma and lifestyle issues and low levels of trust in researchers. Opportunities to connect with peers and help others were described as key motivators. Psychological distress was considered normal within the context of diabetes. A need for some level of human contact in receiving psychosocial support was expressed.

Discussion and conclusion

Findings provide valuable insights into the complex dynamics of engaging young adults with type 1 diabetes in mental health studies. Interviewees provided practical suggestions to assist investigation and delivery of psychosocial interventions for this vulnerable group.     

Peer Reviewed: Pedometer Use Among Adults at High Risk of Type 2 Diabetes,Finland, 2007-2008

Introduction

A pedometer helps adults exercise more, but sedentary adults need instruction and advice to be motivated to use one. We conducted this qualitative study to describe the experiences of participants at high risk of type 2 diabetes who began using a pedometer.

Methods

A total of 74 people at high risk of type 2 diabetes participated in 6 months of group counseling. From April 2007 to April 2008, we collected data through questionnaires, theme interviews (n = 22) and video recordings of counseling sessions. From October 2007 through June 2008, we analyzed the data.

Results

Pedometers were useful tools for observing levels of exercise, setting personal goals for walking, and helping evaluate whether daily goals were met. Negative experiences were associated with functional failures, pedometers'' unsuitability for exercise other than walking, and the goal of 10,000 steps, which some participants considered too high.

Conclusions

Sedentary adults can be motivated to use a pedometer if we inform them that regular users find it a useful instrument for increasing their level of exercise. These adults should set realistic goals for walking and receive adequate instructions for using pedometers.     

Staying physically active after spinal cord injury: a qualitative exploration of barriers and facilitators to exercise participation

Background  

While enhancing physical activity has been an essential goal of public health officials, people with physical impairments such as spinal cord injury (SCI) are more likely to live a sedentary lifestyle. Exercise has been shown to decrease the risk for many of the secondary conditions associated with SCI, including osteoporosis, cardiovascular disease, pressure ulcers, urinary tract infections, diabetes and arthritis, yet this population is rarely a target for health promotion efforts. This paper examines the self-reported exercise experiences of people with SCI using a qualitative-exploratory design.     

‘What kind of life is this?’ Diabetes related notions of wellbeing among adults in eastern Uganda and implications for mitigating future chronic disease risk

Background

Effective prevention and care for type 2 diabetes requires that people link healthy behaviours to chronic disease-related wellbeing. This study explored how people perceive current and future wellbeing, so as to inform lifestyle education.

Methods

Eight focus group discussions and 12 in-depth interviews were conducted in Iganga and Mayuge districts in rural Eastern Uganda among people aged 35–60?years in three risk categories (1) People with diabetes, (2) people at higher risk of diabetes (with hypertension or overweight) and (3) community members without diabetes.

Results

People define wellbeing in three notions: 1) Physical health, 2) Socio-economic status and 3) Aspirational fulfilment. Most people hold the narrower view of wellbeing that focuses on absence of pain. Most overweight participants did not feel their condition as affecting their wellbeing. However, for several people with hypertension, the pains they describe indicate probable serious heart disease. Some people with diabetes expressed deep worry and loss of hope, saying that ‘thoughts are more bothersome than the illness’. Wellbeing among people with diabetes was described in two perspectives: Those who view diabetes as a ‘static’ condition think that they cannot attain wellbeing while those who view it as a ‘dynamic’ condition think that with consistent treatment and healthy lifestyles, they can be well. While many participants perceive future wellbeing as important, people without diabetes are less concerned about it than those with diabetes. Inadequate knowledge about diabetes, drug stock-outs in health facilities, unaffordable healthier food, and contradictory information were cited as barriers to future wellbeing in people with diabetes.

Conclusions

To make type 2 diabetes prevention relevant to healthy people, health education messages should link current lifestyles to future wellbeing. Diabetes patients need counselling support, akin to that in HIV care, to address deep worry and loss of hope.

     

Peer Reviewed: Family History of Diabetes: Exploring Perceptions of People at Risk in the Netherlands

Introduction

The aim of this study was to explore the perceptions of causes, risk, and control with regard to diabetes and the role of family history among people at increased risk for type 2 diabetes.

Methods

Semistructured interviews were conducted among people aged 57 to 72 years with (n = 9) and without (n = 12) a family history of diabetes.

Results

Participants mentioned different causes for diabetes; these were often a combination of genetic and behavioral factors. Some participants with a family history expressed incoherent causal beliefs; their general ideas about the causes of diabetes did not explain why their relatives were affected. The role of genetics as a cause for diabetes was more pronounced when people perceived diabetes as "running in the family," and this finding did not necessarily relate to a high number of affected relatives. Although people with a family history were aware of the diabetes in their family, they did not always associate their family history with increased risk, nor did they worry about getting diabetes. The absence of diabetes in the family was often used as a reason to perceive a low risk. Participants who primarily perceived genetic predisposition as a cause felt less able to prevent getting diabetes.

Conclusion

Future diabetes prevention strategies would benefit from giving more attention to individual perceptions, especially in the context of family history, explaining the multifactorial character of diabetes, and highlighting effective ways to reduce the risk.     

Trends in parameterization,economics and host behaviour in influenza pandemic modelling: a review and reporting protocol

Background

The volume of influenza pandemic modelling studies has increased dramatically in the last decade. Many models incorporate now sophisticated parameterization and validation techniques, economic analyses and the behaviour of individuals.

Methods

We reviewed trends in these aspects in models for influenza pandemic preparedness that aimed to generate policy insights for epidemic management and were published from 2000 to September 2011, i.e. before and after the 2009 pandemic.

Results

We find that many influenza pandemics models rely on parameters from previous modelling studies, models are rarely validated using observed data and are seldom applied to low-income countries. Mechanisms for international data sharing would be necessary to facilitate a wider adoption of model validation. The variety of modelling decisions makes it difficult to compare and evaluate models systematically.

Conclusions

We propose a model Characteristics, Construction, Parameterization and Validation aspects protocol (CCPV protocol) to contribute to the systematisation of the reporting of models with an emphasis on the incorporation of economic aspects and host behaviour. Model reporting, as already exists in many other fields of modelling, would increase confidence in model results, and transparency in their assessment and comparison.

     

Outcomes of isoniazid prophylaxis among HIV-infected children attending routine HIV care in Kenya

Setting:

Three human immunodeficiency virus (HIV) care clinics in Eastern Province, Kenya.

Objectives:

To establish rates of treatment completion, loss to follow-up, adverse drug reactions, tuberculosis (TB) disease and mortality among 606 HIV-infected children during 6 months of isoniazid preventive therapy (IPT).

Design:

Retrospective record review.

Results:

Of 606 HIV-infected children started on IPT, 556 (91.7%) successfully completed treatment, while 20 (3.3%) completed with interruptions. Cumulatively, 30 children (4.9%) did not complete IPT: 4 (0.7%) were lost to follow-up, 4 (0.7%) discontinued because of treatment interruptions, 2 (0.3%) developed adverse drug reactions, 1 developed a chronic cough, 1 was transferred to a non-IPT facility and 18 (3%) developed TB, including 2 who eventually died. TB disease was diagnosed in a median of 3 weeks (interquartile range [IQR] 2–16) post-IPT initiation. The median CD4 cell count for those aged 1–4 years who developed TB disease was 1023 cells/mm³ (IQR 375–1432), while for those aged 5–14 years it was 149 cells/mm³ (IQR 16–332). Isoniazid resistance was not detected in the four culture-confirmed TB cases.

Conclusion:

The high treatment completion, low loss to follow-up rate and few adverse drug reactions affirm the feasibility of IPT provision to children in HIV care clinics.