Social Networks and Renal Education: Promoting Transplantation
Status: | Recruiting |
---|---|
Conditions: | Renal Impairment / Chronic Kidney Disease, Renal Impairment / Chronic Kidney Disease |
Therapuetic Areas: | Nephrology / Urology |
Healthy: | No |
Age Range: | 18 - Any |
Updated: | 12/15/2018 |
Start Date: | October 23, 2018 |
End Date: | July 2022 |
Contact: | Avrum Gillespie, MD |
Email: | avrum.gillespie@tuhs.temple.edu |
Phone: | 2157077937 |
There are significant and persistent disparities in access to kidney transplantation and as a
result most patients with end stage renal disease receive hemodialysis (HD). HD is unique as
it is a treatment performed in a group setting which lends itself to forming social networks.
The goal of this research study is to identify and characterize the social networks of HD
patients and measure the influence of HD social networks on knowledge, attitudes, and
behaviors towards transplantation using repeated surveys and a network targeted educational
intervention.
result most patients with end stage renal disease receive hemodialysis (HD). HD is unique as
it is a treatment performed in a group setting which lends itself to forming social networks.
The goal of this research study is to identify and characterize the social networks of HD
patients and measure the influence of HD social networks on knowledge, attitudes, and
behaviors towards transplantation using repeated surveys and a network targeted educational
intervention.
Kidney transplantation is the treatment of choice for end stage renal disease (ESRD).
Unfortunately, there are significant and persistent gender and racial disparities in access
to transplantation and the successful navigation of transplant evaluation process. The
process includes understanding suitability/eligibility for transplantation, obtaining a
referral to a transplant center for medical evaluation, completion of medical testing for
transplant candidacy, and asking family and friends to donate. Women and ethnic minorities
are less likely to be informed of the option of transplantation, referred to a transplant
center, and complete the medical evaluation needed to be placed on the kidney transplant
waiting list. Modifiable barriers to completing these steps include: lack of knowledge, lack
of social support, and inability to discuss transplantation and living donation. As a result
chronic hemodialysis (HD) becomes the default treatment. HD clinics are unique social
environments in that patients receive their treatments in a group setting which facilitates
social networks and the formation of unique micro-communities based on their assigned shift.
The robust influences of social networks are well-described in other chronic conditions like
obesity, diabetes, and smoking, however, there is scant information on the impact of social
networks in HD clinics. Differences in social network structure by gender and race may create
critical barriers in the kidney transplant process. White men tend to have diffuse networks
which are better for communicating novel information. Women and minorities tend to have
clustered/dense networks, which tend to reinforce attitudes and behaviors. It has been
speculated that social networks negatively affect transplantation through the clustering of
inaccurate information, negative attitudes, and exposure to failed transplants. Our previous
observational research, however, suggests that HD patient social network structure can
facilitate the completion of pre-transplant steps by providing patients with needed
information and support. Further insight into HD social networks has the potential to guide
measures to reduce transplant disparities. Our overarching hypothesis is that hemodialysis
social networks facilitate the spread of information and behaviors, and that using a targeted
social network intervention will improve access to transplantation especially among women and
minorities. To address this hypothesis, we will pursue the following specific aims:
Aim 1: Characterize hemodialysis patient social networks by gender and race. Using our
previously validated survey, we will model social networks of hemodialysis patients in two
independent clinics.
Hypothesis 1: Female hemodialysis patients of all race and ethnicity have dense (higher
clustering coefficient) social networks when compared to male HD patients.
Aim 2: Assess the relationship between network structure and knowledge, attitudes, and
behaviors towards kidney transplantation. Using the network information from Aim 1, we will
analyze the clustering of information, attitudes, and behaviors towards kidney
transplantation.
Hypothesis 2: Patients in dense HD clinic social networks have similar attitudes (both
positive and negative) about transplantation and behaviors (initiating transplant discussion
and completing steps in the kidney transplant process) as compared to patients in diffuse
networks.
Aim 3: Compare and contrast the diffusion of knowledge, attitudes, and behaviors regarding
transplantation through HD social networks by targeting either the most clustered (as
measured by clustering coefficient) or the most central members (as measured by betweenness
centrality) of the network to disseminate a transplant education intervention. We will assign
every HD clinic shift to one of the two targeting strategies and we will measure the spread
of information, attitudes, and behaviors by comparing the targeted patients to the other
patients on their shift.
Hypothesis 3: Targeting patients with high clustering coefficient will be the most effective
method to spread information and favorable attitudes toward transplantation, as well as
completion of steps toward transplantation.
Unfortunately, there are significant and persistent gender and racial disparities in access
to transplantation and the successful navigation of transplant evaluation process. The
process includes understanding suitability/eligibility for transplantation, obtaining a
referral to a transplant center for medical evaluation, completion of medical testing for
transplant candidacy, and asking family and friends to donate. Women and ethnic minorities
are less likely to be informed of the option of transplantation, referred to a transplant
center, and complete the medical evaluation needed to be placed on the kidney transplant
waiting list. Modifiable barriers to completing these steps include: lack of knowledge, lack
of social support, and inability to discuss transplantation and living donation. As a result
chronic hemodialysis (HD) becomes the default treatment. HD clinics are unique social
environments in that patients receive their treatments in a group setting which facilitates
social networks and the formation of unique micro-communities based on their assigned shift.
The robust influences of social networks are well-described in other chronic conditions like
obesity, diabetes, and smoking, however, there is scant information on the impact of social
networks in HD clinics. Differences in social network structure by gender and race may create
critical barriers in the kidney transplant process. White men tend to have diffuse networks
which are better for communicating novel information. Women and minorities tend to have
clustered/dense networks, which tend to reinforce attitudes and behaviors. It has been
speculated that social networks negatively affect transplantation through the clustering of
inaccurate information, negative attitudes, and exposure to failed transplants. Our previous
observational research, however, suggests that HD patient social network structure can
facilitate the completion of pre-transplant steps by providing patients with needed
information and support. Further insight into HD social networks has the potential to guide
measures to reduce transplant disparities. Our overarching hypothesis is that hemodialysis
social networks facilitate the spread of information and behaviors, and that using a targeted
social network intervention will improve access to transplantation especially among women and
minorities. To address this hypothesis, we will pursue the following specific aims:
Aim 1: Characterize hemodialysis patient social networks by gender and race. Using our
previously validated survey, we will model social networks of hemodialysis patients in two
independent clinics.
Hypothesis 1: Female hemodialysis patients of all race and ethnicity have dense (higher
clustering coefficient) social networks when compared to male HD patients.
Aim 2: Assess the relationship between network structure and knowledge, attitudes, and
behaviors towards kidney transplantation. Using the network information from Aim 1, we will
analyze the clustering of information, attitudes, and behaviors towards kidney
transplantation.
Hypothesis 2: Patients in dense HD clinic social networks have similar attitudes (both
positive and negative) about transplantation and behaviors (initiating transplant discussion
and completing steps in the kidney transplant process) as compared to patients in diffuse
networks.
Aim 3: Compare and contrast the diffusion of knowledge, attitudes, and behaviors regarding
transplantation through HD social networks by targeting either the most clustered (as
measured by clustering coefficient) or the most central members (as measured by betweenness
centrality) of the network to disseminate a transplant education intervention. We will assign
every HD clinic shift to one of the two targeting strategies and we will measure the spread
of information, attitudes, and behaviors by comparing the targeted patients to the other
patients on their shift.
Hypothesis 3: Targeting patients with high clustering coefficient will be the most effective
method to spread information and favorable attitudes toward transplantation, as well as
completion of steps toward transplantation.
Inclusion Criteria:
- All patients 18 years of age or older, able to consent to participation and respond to
the validated survey in English, and who are present in the HD clinics during the
initial survey periods, July 2018 to November 2018 are eligible to participate in the
baseline network survey.
- Transplant eligible patients will be eligible to participate. All patients who
participate will be evaluated via chart review by a study transplant nephrologist for
transplant candidacy and, if eligible, the primary nephrologist will be asked whether
the patient is an appropriate candidate and reasons they have not been referred. We
will defer the transplant referral to the attending nephrologist. Our criteria for
transplant ineligibility are nursing home resident, >79 years of age, active or recent
malignancy, inoperable coronary artery disease, or comorbid illness that will make it
unlikely that the patient will survive >3 years after transplant.
Exclusion Criteria:
- Patients who are unable or unwilling to provide consent or complete the survey in
English .
We found this trial at
1
site
1801 N Broad St
Philadelphia, Pennsylvania 19122
Philadelphia, Pennsylvania 19122
(215) 204-7000
Phone: 215-707-7937
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