U.S. Research on Psychosocial Topics in ESRD: Hidden Gems

If you use PubMed to look up articles on dialysis published in the last decade, as of June 28, 2021, you’ll find more than 62,444 articles. When you narrow that search to just dialysis articles with psychosocial content, you’ll find 371. When you narrow it further to look at articles on “peritoneal dialysis” with psychosocial content, you’ll find 59. For “home hemodialysis” with psychosocial content, you’ll find only 18. Frustratingly, 46 of the 59 PD articles and 13 of the 18 home HD articles were written by authors who live outside the U.S. And some of the articles by U.S. authors on peritoneal dialysis included home hemodialysis. Why is there so little research on psychosocial needs and services for dialysis patients in the U.S., especially when they do PD or home HD?

What is a “psychosocial” approach to healthcare?

Wikipedia states: “The psychosocial approach looks at individuals in the context of the combined influence that psychological factors and the surrounding social environment have on their physical and mental wellness and their ability to function. This approach is used in a broad range of helping professions in health and social care settings as well as by medical and social science researchers.”

There are some more articles—when you know where to look. As a social worker, I knew that articles in the Journal of Nephrology Social Work have psychosocial content, and have seen some related to home dialysis. But, this NKF journal is not indexed in Medline (not in PubMed). Therefore, anyone looking would have to first know that this journal exists, then search for psychosocial content related to home dialysis to find research and/or case studies. The NKF website where the journal is published states, “The Journal of Nephrology Social Work is an open access journal under the CC BY-NC-ND license.” The JNSW archive includes issues starting in 1998. There are articles on transplant and dialysis other than home dialysis, end of life care, psychosocial interventions, and more plus abstracts presented at the National Kidney Foundation’s meetings. Using the key words “home” (for home dialysis) and “PD” or “peritoneal dialysis,” I searched JNSW articles from the past 10 years. Below are hyperlinked titles and abstracts of the articles I found. I hope these contribute to our knowledge of psychosocial needs of and care for patients on home HD or PD.

Volume 33, Summer 2010
The Renal Caregiver Burden Scale: Phase One
Robert A. Schneider, PhD, LISW

Caregiver burden is becoming more important as the aging population becomes larger. This growth applies to caregivers involved in chronic illness management in general, and chronic renal disease in particular. The purpose of the present study was to create the Renal Caregiver Burden Scale (RCBS) and establish basic measures of its reliability and validity. In a preliminary test for the new measure, seven master's level renal social workers from various clinical settings across the country interviewed 52 voluntary dialysis patient caregivers. The measures used were thought to be associated with the construct of burden. A Cronbach alpha analysis yielded a reasonably high internal consistency reliability of 0.84 for the 16-item RCBS. The measure also correlated highly with the Zarit Burden Interview at 0.72 and the Center for Epidemiologic Studies Depression Scale depression scale at 0.70. Recommendations for further refining and validation of the measure with a larger sample are discussed. The relatively high degrees of reliability and validity for the first outing are encouraging, although 2 of the 16 items need restating due to ceiling and basement effects.

Volume 35, Winter 2011
The Impact of Psychosocial Factors on Peritonitis: A Social Work Approach
Shelly D. Crumley, MSW, LCSW

Peritonitis is a preventable infection in people on peritoneal dialysis (PD). Psychosocial factors that may impact the onset of peritonitis include complacency, depression, forgetfulness, expediency, caregiver stress/burnout, and the "pet factor." The clinical social worker is skilled in addressing each of these areas to reduce the rate of peritonitis in the PD population. Intervention methodology, such as motivational interviewing, depression assessment, behavioral therapy, the dispelling of myths, stress reduction, adjustment counseling, and pet relationship significance assessment are utilized to effectively address peritonitis prevention. Patient education on psychosocial factors that may lead to peritonitis followed by appropriate social work clinical interventions may be implemented for a true interdisciplinary approach to peritonitis prevention.

Volume 36, Summer 2012
Psychosocial Barriers to Home Dialysis: A Literature Review
Julie Régimbald, MSW, RSW; Cindy Gill, MSW, RSW

This review of 35 research and anecdotal reports discussing psychosocial barriers to home dialysis explores the challenges and successes of home dialysis from the viewpoints of both patients and nephrology professionals. The literature idenpngied multiple psychosocial barriers to successful home dialysis: physical ability, cognition, patient attitudes toward home dialysis, emotional impact on the patient and on the family, support from family, whether the patient or caregiver is responsible for treatment, time constraints, patient personality and mental health, safety, patient's adherence with procedures, suitability of patient's home and willingness to change it, cultural issues, language barriers, unplanned dialysis start, policy differences between modalities, loss of relationships with staff and other patients, support from staff for home dialysis, knowledge barriers, cost to hospital/staff availability to train and maintain home dialysis patients, and cost to the patient. Assessment tools already exist. The Jo-Pre-training Assessment Tool (JPAT) is a screening instrument which assesses the suitability of candidates for home dialysis, either peritoneal dialysis (PD) or home hemodialysis (HHD). It is designed to idenpngy health-related problems; candidates are then referred to the appropriate professionals among the multidisciplinary team for assessment and care before starting training. The Method to Assess Treatment Choices for Home Dialysis (MATCH-D) was also developed to assess patients' suitability for home dialysis (PD or HHD), screening for medical and social barriers. However, we were not able to find a comprehensive tool specific to psychosocial barriers experienced by patients and their families. Based on the literature review, we concluded that psychosocial aspects are significant factors influencing the patients' ability to maintain home dialysis. To this end, the authors are developing a new tool: the Psychosocial Assessment Tool for Home Dialysis (PATH-D).

Volume 36, Winter 2012
Nancy Spaeth's Story: A Little History and a Lot of Hope
Lisa Hall, MSSW, LICSW

The preceding historical primer by Savage and Browne documented that access to hemodialysis in the U.S. was not always available. Life-and-death decision making that occurred in Seattle no doubt affected individuals and families dramatically as the following interview illustrates. Lisa Hall, MSSW, LICSW, is the Patient Services Director at Northwest Renal Network (ESRD Network 16). Nancy Spaeth serves on the network's Patient Advisory Committee.

Volume 37, Winter 2013
Emerging Trends in Discharging Disruptive Dialysis Patients: A Case Study
Amber M. Borges, MSW, LCSW

At the end of the 2009 calendar year, 399,000 End-Stage Renal Disease (ESRD) patients received dialysis as their treatment method, according to the U.S. Renal Data System. In addition to the consequences of their ESRD, patients on dialysis experience many challenging emotional, physical and financial burdens. Steps need to be taken to ensure safety when a patient is a threat to the rights and safety of other patients and staff. Severe cases of threat and abuse, both verbal and physical, can lead to the offending patient being involuntarily discharged from the dialysis facility. However, the ESRD Networks, as well as the state Departments of Public Health, do not have the authority to mandate that outpatient dialysis facilities accept known disruptive patients. When patients are involuntarily discharged from a dialysis facility, and cannot find another outpatient facility to admit them, they are instructed to go to the nearest emergency room for dialysis care. The Emergency Treatment and Active Labor Act requires hospitals to provide care to anyone needing emergency healthcare treatment regardless of citizenship, legal status or ability to pay. This case study attempts to explore the emerging trends of discharged, disruptive dialysis patients who are denied dialysis services from outpatient dialysis facilities.

Volume 38, Issue 2 (2014)
Routine Use of the PedsQL™ for Assessment of Quality of Life in Pediatric Dialysis Patients
Kristin L. Stockard, LICSW; Kristy D. Seidel, MS; Joseph T. Flynn, MD, MS

To comply with new Centers for Medicare and Medicaid Services (CMS) regulations requiring regular assessment of patient quality of life (QoL) by dialysis programs, we administered the PedsQL™ survey instrument to every eligible dialysis patient in our program beginning in October 2008. We compared findings between groups of our patients assessed from October 2008 through January 2010, and also with results of previously published multi-center studies. Compared to prior published studies using the PedsQL, the overall scores for patients and parents were lower in this routine collection of survey responses. Unexpectedly, we found that HD patients and patients living at greater distances from our center had better QoL scores than PD patients and those living closest to the medical center. These results require re-examination in larger, multi-center studies.

Volume 39, Issue 2 (2015)
Health-Related Quality of Life Among Patients Receiving Home Dialysis Therapies
Dodie M. Stein, PhD, MSW, LCSW; Janet L. Welch, PhD, RN, FAAN; Michael A. Kraus, MD; James E. Slaven, MS, MA

Little is known about the health-related quality of life (HRQOL) of patients receiving daily home hemodialysis (DHHD) or peritoneal dialysis (PD). The purposes of this study are to describe the HRQOL of these patients and examine the effect of some demographic and illness characteristics on HRQOL. A total of 114 patients from a single Midwestern unit were included. Average physical component summary (PCS) scores were lower than the general population. Both DHHD and PD patients perceived themselves as having good mental health with mental component summary (MCS) scores at or above those of the general population. These results suggest that the control and independence provided by home therapies have a positive effect on patients’ outlook on life.

Volume 40, Issue 2 (2016)
NKF Peers Mentoring Program: An Overview and Lessons Learned
Kelli Collins, MSW, LICSW

This article provides an overview of the National Kidney Foundation's Peers mentoring program. Following a brief discussion of the evidence behind peer support across disease states, the article reviews data collected since the program's official launch in September 2011 through December 31, 2015. Potential challenges and lessons learned from the program to date are highlighted and discussed.

Volume 42, Issue 1 (2018)
Psychometric Evaluation of the Kidney Disease Quality of Life 36-Item Survey Instrument (KDQOL-36): A Comparison Between Older and Younger Adults Receiving Dialysis
Rasheeda K. Hall MD, MBA, MHSc; Cathleen S. Colon-Emeric MD, MHSc

Medicare requires that dialysis units assess quality of life in all patients annually using the Kidney Disease Quality of Life 36-item survey instrument (KDQOL-36). However, whether the KDQOL-36 is a valid instrument for older adults receiving dialysis is not known. The objective of this study was to evaluate the reliability and validity of the KDQOL-36 in both older and younger patients receiving dialysis. We used KDQOL-36 item responses from a nationally representative sample of 3500 older (≥ 75 years) and 500 younger (ages 21 to 74 years) patients receiving dialysis in 2012. We assessed subscale means, ceiling/floor effects, internal consistency reliability, and construct validity. Results demonstrated that the KDQOL-36 has comparable reliability and validity in older and younger adults receiving dialysis.

Volume 43, Issue 1 (2019)
The Role for Nephrology Social Work in the New Kidney Disease Paradigm—Moving Ahead by Remembering How We Got Here
Teri Browne, PhD, MSW

2019 brings exciting changes to the delivery of kidney disease care in the United States and beyond. We have increasing attention to home dialysis and kidney transplantation as preferred treatment modalities for end-stage renal disease (ESRD), new organizations such as CVS Pharmacy and Cricket are expanding leadership in chronic kidney disease (CKD) treatment, innovative treatment options such as wearable and implantable kidneys on the horizon, and a new stream of funding for kidney disease innovation through KidneyX. These changes are happening at the same time that patient-centered research is becoming the standard in outcomes evaluation. Nephrology social workers (NSWs) must act now to position ourselves as leaders in this new kidney disease paradigm; these opportunities present an exciting time for social workers to highlight how our interventions can help patients have the best outcomes as kidney disease care evolves.

Volume 44, Issue 2 (2020)
Practice Note: COVID-19: A Dialysis Social Worker’s Response
Amber Blackshear, LCSW

Nephrology social workers commonly help their patients with life crises. With the COVID-19 pandemic, my role in supporting patients through crises has significantly expanded. I have had to keep up with the latest healthcare recommendations and understand these changes so I can accurately inform my patients about what to expect for their safety and treatment. Almost daily, new policies are added or changed, and I am often left questioning how a new policy will change the way I practice.