1. The Psychosocial Factors Impacting on Renal Patients Decisions to Change Treatment Modalities
Nina Menezes
Lorraine Xavier-Ambrosius
Professor Louise Harms (University of Melbourne)
Social Work
The Alfred Hospital
Alfred Health

2. Background on Alfred Health
It is the second oldest hospital in Victoria, and the oldest Melbourne hospital still operating on its original site.
500 bed major acute teaching hospital
Located in Inner South of Melbourne
Statewide services to a large number of specialties such as Trauma, Burns, Cystic Fibrosis, HIV and Transplant Services
Over 5000 trauma patients per year
45 ICU beds
Over 7000 outpatient appointments yearly
The Department of Renal Medicine is responsible for inpatient and outpatient care of people with renal impairment.
Acute 20 bed unit with 4 haemodialysis rooms.
Multiple outpatient clinics and haemodialysis centres.
The Alfred Hospital provides specialty services in the treatment of cancer, asthma, psychiatry,in cardiology, and in neurosurgery; houses the largest intensive care unit in Australia; and contains many unique state health facilities, including adult cystic fibrosis services and the only adult burns centre in Victoria and Tasmania. It has always been a leader in offering new treatments and services. In addition to being one of the two major trauma centres in Victoria,

3. Dialysis Incentre (Hemodialysis) vs Home (Peritonial Dialysis, Hemo @ Home)
Both hemodialysis (HD) and peritoneal dialysis (PD) impose many burdens on patients and their families.
Kidney failure and dialysis impact negatively on quality of life (QOL), resulting in depression, anxiety, interpersonal stress
Lifestyle restrictions

4. Peritoneal Dialysis across Australasia

6. Alfred Health Peritoneal Dialysis

7. HOME BEFORE HOSPITAL MODEL
Home Before Hospital Model of Care
1. Treatment Pathway
2. Nurse Outreach /
clinical coach
3. Hybrid treatment plans
single workforce
4. E-Health
Diagnosis
Progressive CKD
Pre -
Dialysis
ESKD
Transplantation
Conservative Care
Home
HDx
Institutional PD x
PDx
Peritoneal Dialysis
Home Haemodialysis
Therapies
Peritoneal
Haemodialysis
Institutional Dialysis
TRADITIONAL MODEL
HOME BEFORE HOSPITAL MODEL
3. Hybrid
Treatment
Plans &
Single
Workforce
2. Nurse
Outreach
Education &
Decision
Support
4. Health supports.
1. Treatment
Pathway 7

8. Renal Pathway at Alfred Health
ADVANCED CARE PLANNING
TRANSPLANTATION
PERITONEAL
DIALYSIS
DIAGNOSIS
PROGRESSIVE
CKD
PRE-DIALYSIS
ESKD
HOME
THERAPIES
CENTRE
DIALYSIS
HOME
HAEMODIALYSIS
OUTREACH TEAM : EDUCATION, PLANNING & DECISION SUPPORT
CONSERVATIVE
CARE

9. Aims of Presentation
Define the psychosocial factors present in the cohort of patients who have changed modality
Identify psychosocial factors that correlate with patient decision-making to change treatment modalities in Renal Medicine
Identify potential areas to expand the social work role in Renal Medicine for patients deciding to change treatment modalities
Assist in development of Core Clinical Indicators for Social Work with renal patients and Psychosocial Services

10. Review of all patients medical records Years 2010-2013
Background
Data Mining Exercise
Retrospective Data from The Australia and New Zealand Dialysis and Transplant Registry (ANZDATA)
ANZDATA collects a wide range of statistics which relate to the outcomes of treatment of those with end stage renal failure. All renal units in Australia and New Zealand participate.
Psychosocial factors is already a specific code already used by renal clinicians
Review of all patients medical records
Years
Total of 119 patients of which 16 patients changed treatment modalities = 13.5%
18 years and above
Specifically patients who have decided to change from one treatment modality to another (excluded transplant & conservative care)
Remarkable advances in the understanding and treatment of ESRD have been achieved over the last 20 yr. However, most of the investigations have focused
on medical factors, many of which are fixed features. Over recent years, there has been increasing attention given to the individual characteristics of patients with an emphasis placed on understanding the effects the patients’ social situation,perceptions and responses to the illness, their physicians and healthcare providers, their spouses and families,
CKD is a progressive disease that is associated with decreased QoL, and progression towards ESRD and increased risk of mortality.
The Australia and New Zealand Dialysis and Transplant registry (ANZDATA) maintains a database of patients treated by maintenance dialysis or renal transplantation in Australia. All Renal Units that provide End Stage Renal Disease (ESRD) treatment in Australia participate in the registry.
Patients with ESRD treated with haemodialysis deal with the multiple stressors of their illness and attempt to cope with the demands of their spouses, families, occupations, and communities. Extensive evidence exists in relation to patients’ physiological reactions to dialysis. However, little research has focused on the psychosocial factors that impact both upon these physiological responses to dialysis and the decisions patients make relating to engagement with ESRD treatment.
Nephrology social work services support and maximise the psychosocial functioning and adjustment of patients who experience ESRD, as well as their families. These services are provided to improve social and emotional stressors resulting from the interacting physical, social, and psychological factors of ESRD, including shortened life expectancy; altered lifestyle with changes in social, financial; vocational and sexual functioning. The demands of treatment are rigorous, time-consuming, and involve a complex medical regimen. Social Work functions as a part of a multidisciplinary team that works to address the psychosocial needs of patients and their families. This project aims to identify and examine the nature of psychosocial factors that are correlating to decision making for renal patients (to change treatment modalities or cease treatment). A systematic review of correlated psychosocial factors that have been identified will assist in ensuring better support during decision making process and enhance patient outcomes.
Reviewing the published ANZDATA from to identied those patients who were recorded or coded as having stopped dialysis or changed treatment modalities due to psychosocial factors. This will mean that the UR number of approximately 119 patients will be recorded on a data sheet.
Once these patients have been identified, a data mining exercise will be undertaken, reviewing these patients’ medical records to identify the documented psychosocial factors that led to this decision of stopping dialysis or changing treatment modality ( ).
‘Psychosocial factors’ is a specific code already used by renal clinicians, for example dialysis coordinators, who record data on patient outcomes for ANZDATA purposes at the time a patient decides to change treatment modalities or decides to stop treatment.

11. Method Total treatment modality changes = 16 Data Collection Tool
Data Collection Tool
Not recorded ID
UR:
 UR 1
Age No 2
Gender
Male
Female 3
Interpreter Required
Yes 4
Country of origin
Australia
Other 5
ATSI 6
Treatment of modality change 7
Decision to stop dialysis 8
Psychosocial factors noted in medical history 9
Was the change in modality due to psychosocial reasons 10
Carer Issues 11
Financial Stress 12
Vocational 13
Lifestyle restrictions 14
Emotional Adjustment 15
Lack of social support 16
Mental health issues 17
Comorbidities 18
Transport issues 19
Legal Issues
Describe 20
Social Work involved

12. Results Thematic Analysis was undertaken
10 Emergent psychosocial themes were identified that influenced decision making for patient with ESRD
Carer Issues
Financial issues
Vocational Issues
Lifestyle Restrictions
Emotional Adjustment
Social Support
Mental Health issues
Comorbities
Transport Issues
Legal Issues

13. Basic Demographics Total = 16 Patients 50% male a & 50% female
63% born in Australia

14. Treatment of Modality Changes
Out of the 16 patients who changed treatment modalities; 30% of the cohort had chosen to stop dialysis.

15. Reason for Modality Changes
Were psychosocial factors noted in patient hx?
Yes 100%
37.5 % change of modality due to medical reasons
62.5 % change of modality due to psychosocial reasons

16. Carer & Financial Issues

17. Vocational & Lifestyle Restrictions

18. Emotional Adjustment
Lack of Social Support

19. Mental Health
Comorbidities

20. Transport Issues
Legal Issues

21. Was a social worker involved in care?

22. Trends
Cross tabulation between Change in Modality due to Psychosocial Reasons and :
Carers Issues noted = 57%
Financial Issues noted = 44%
Lifestyle restrictions noted = 69%
Emotional Adjustment issues noted = 63%
Lack of Support = 50%
Mental Health issues = 50%
Examining the influence of potentially modifiable psychosocial factors on the progression of disease and management of those with advanced CKD has the capacity to identify areas for psychosocial intervention in this vulnerable and growing population.

23. Impact of Findings
An increased awareness of psychosocial factors that impact on decision making in Renal Medicine.
Increase holistic care and management for renal patients, recognising the “disease” paradigm (biomedical), and also highlighting the social model of health (psychosocial).
Development of systematic approaches to screening patient for psychosocial factors to enhance patient outcomes in decision making and treatment.
To improve treatment outcome and patient quality of life (QoL) of renal patients
Holistic, patient centred care during decision making /change in treatment modalities includes psychosocial considerations;
To guide planning and decision making adequately, the comprehensive psychosocial assessment addresses both problems and strengths of the patient and his or her situation and spells out the implications of this information for treatment planning and delivery of care.
Multidisciplinary input and active collaboration in each patient’s treatment and discharge planning ensures that all available information and expertise are considered as decisions are made. If the social worker is not part of the multidisciplinary planning conference, the opportunity for input and collaboration is seriously diminished.
The findings will provide valuable information for service planning and service provision for the Social Work Department. When considering change in treatment, a psychosocial review by social work will :
increase the awareness of treating team and patient/families of psychosocial factors that impact on decision making in Renal Medicine.
increase holistic care and management for renal patients, recognising the “disease” paradigm (biomedical), and also highlighting the social model of health (psychosocial).
Ideally, the
Development of systematic approaches to screening patient for psychosocial factors to enhance patient outcomes & optimise care for patients with CKD,in decision making and treatment

24. Shaping a Social Work Service
Creation of evidence base for development of a comprehensive social work service;
NASW/NKF Clinical Indicators for Social Work and Psychosocial Service in Nephrology Settings (
Recommended Core Clinical Indicators for Social Work and Psychosocial Services in Nephrology SettingsI
Indicator 1. Timely Initial Contact
Indicator 2. Timely Psychosocial Assessment for Dialysis or Peritoneal Dialysis Patients
Indicator 3. Comprehensive Psychosocial Assessment
Indicator 4. Teamwork and Interdisciplinary Collaboration
Indicator 5. Psychosocial Problem Resolution
Indicator 6. Primary Caregiver Satisfaction
Indicator 7. Pretransplant Counselling for ESRD Patients
Indicator 8. Pretransplant Counselling for Live Organ Donors
The systematic monitoring of quality and patient centred care promotes holistic
In addition to using the National Assoc Of Social Workers clinical indicators for Social Work in Nephrology Setting, when a patient is considering a change in treatment modalities (including decision to stop dialysis), it is recommended that a social worker complete a comprehensive psychosocial ax of patient and/or family to ensure thr
Evidence from various chronic disease settings indicates that psychosocial factors including depression, anxiety and social isolation have a significant impact on quality of life, biological factors and disease progression.T argeted psychosocial interventions have been shown to improve quality of life, treatment compliance, physical functioning and reduce the risk of cardiovascular disease

25. References
Ashby, M., Hoog, C. O., Kellehear, A., Kerr, P. G., Brooks, D., Nicholls, K. & Forrest, M. (2005). Renal dialysis abatement: Lessons from a social study, Palliative Medicine, 19, doi: / pm1043oa
Cass, A., Cunningham, J., & Hoy, W. (2002). New South Wales Public Health Bulletin, 13, doi: /NB02061
Chan, H. W., Clayton, P. A., McDonald, S. P., Agar, J. W. M., & Jose, M.D. (2012). Risk factors for dialysis withdrawal: An analysis of the Australia and New Zealand dialysis and transplant (ANZDATA) registry, , Clinical Journal of the American Society of Nephrology, 7, doi: /CJN
Cass, A., Cunningham, J., Wang, Z., & Hoy, W. (2001). Social disadvantage and variation in the incidence of end-stage renal disease in Australian capital cities, Australian and New Zealand Journal of Public Health, 25,