Patient s Experience with Home Hemodialysis: A Qualitative Study

Transcription

1 Patient s Experience with Home Hemodialysis: A Qualitative Study MASTER OF HEALTH SCIENCES IN COMMUNITY HEALTH Chris Purves March 6, 2015

2 Agenda Background Statistics, Cost Analysis, Current Developments Purpose Gaps in Literature Theoretical Framework Methodology Design, Interview Questions Results Socio-Demographics, Emerging Themes Conclusion Trustworthiness, S&L, Research Implications, Future Recommendations, Closing Remarks.

3 HD & PD HD remains the most prevalent type of dialysis in Canada, particularly at the in-centre locations at 79% (Ontario Renal Network, 2011).

4 Corporation Data Proportion of Prevalent Dialysis Patients by Treatment Type: (ORN, 2014) Type Q2 FY 11/12 Q2 FY 14/15 Facility-based HD 62.3% 71.2% 8.9% Home HD 12% 10.3% 1.7%

5 Costs Analysis (McFarlane et al., 2002, 2003, 2011) All forms of dialysis are expensive In-centre costs $60,000-$95,000 annually per patient in North America HHD is more intense and frequent therapy, in-centre HD proves to be more costly. Staffing, overhead & support, admission, procedures Materials, lab tests, depreciation

6 Cost Analysis McFarlane, Pierratos and Redelmeier (2002) conducted a one-year descriptive costing study at two centres in Toronto, ON. Moving dialysis into the home can cut over $60,000 each year per patient. Considering there are over 23,000 patients receiving HD in Canada there is a significant monetary incentive to increase the uptake of independent dialysis and cost savings will be more marked over time.

7 The choice of renal replacement modality is not simply a reflection of an individual s psychosocial attributes, but rather a complex interplay between the patient s health state and the perceived benefits and barriers to adopting the chosen therapy. (Cefazzo et al., 2009)

8 Current Developments Provincial Leader for managing and delivering renal services Ontario Renal Plan Reduce the burden of CKD, improve quality of care Recognizes an opportunity to enhance autonomy, quality of life, and outcomes for patients with CKD, while reducing costs to the overall healthcare system through increased uptake of independent dialysis (ORN, 2014)

9 Purpose Explore the experience of HHD patients and identify common benefits and barriers. Research Question: What are the common benefits and barriers that emerge through the exploration of the HHD patient experience?

10 Gaps in Literature No research on HHD in Durham Region (1 st in Central East LHIN) Optimal strategy to teach and learn about NHHD has not been thoroughly assessed Patient preferred vascular access requires further clarification Understanding the patient s dialysis experience through their own reflection (surveys, QoL tools) Although past research has linked HHD with improved quality of life and clinical outcomes they have not explored the patient experience using semistructured interviews with open ended questions Lack of theoretical frameworks used to support research

11 Theoretical Framework The Health Belief Model (HBM) Developed in the 1950 s Has been revised over the years Aimed at understanding and reducing barriers to a health related action Consists of six fundamental constructs: Perceived Susceptibility -not susceptible Perceived Severity Perceived Benefits Perceived Barriers Cues to Action -all receive treatment Self-efficacy

12 Methodology 3 observation days at community-based hospital Recruited 20 patients on-site during clinic days Data Collection Semi-structured interviews at LHW Consent, Nicknames, socio-demographic information 5 themed interview questions Audio recorded Data Analysis Transcribed by principle investigator Template Approach (HBM constructs) Thematic Analysis (Nodes)

13 Themed Questions 1: Share with me how you came to start HHD therapy and your transition experience to home dialysis? Was there anything or anyone that had an influence in your decision? 2: What is it about this type of therapy that has a positive effect in your life? What do you like about it? What makes it easy? 3: What are the challenges you have found or continue to face with home therapy? What makes it hard? 4: Who or what helps you deal with the challenges? Do you rely on a caregiver? What could help you continue this home therapy? 5: In your opinion what could enhance your dialysis experience at home?

14 Participant Socio-Demographics Gender Age Range Mean Median 13 males; 7 females Living Arrangement and Location 20 house - 5 Whitby; 5 Oshawa; 2 Ajax; 1 Pickering; 1 Brooklin; 1 Courtice; 1 Bowmanville; 1 Newcastle; ; 1 Port Perry; 1 Little Britain; 1 Port Hope Marital Status Level of Education Annual Personal Income Range Mean Median Annual Household Income Range Range Mean Median 15 married; 2 single; 1 divorced; 1 common law; 1 widowed 8 High School; 8 College; 4 University $10,000 - $120,000 $44,300 $30,500 $16,000 - $250,000 $95,111 $72,500

15 Emerging Themes HBM Constructs Perceived Benefits Perceived Barriers Perceived Severity Self-Efficacy Emerging Themes Personalized and Flexible Treatment Schedule Autonomy and Psychological Benefits Physical Health Benefits Management of Supplies Self-Cannulation Travel Restrictions Troubleshooting Alarms Mindset Compulsory for Survival Confidence with Experience Caregiver Support Vascular Access

16 Perceived Benefits Personalized and Flexible Treatment Schedule Autonomy and Psychological Benefits Physical Health Benefits There s no schedule. It s my schedule. I can do it as much as I want or as little as I want, if my needs change around my family There s such a feeling of power there like you feel really good because your taking good care of yourself Psychologically it really makes me feel like I m independent Well you re generally feeling a lot better. I can t feel this well on three days a week

17 Perceived Barriers Management of Supplies Self-Cannulation Travel Restrictions Troubleshooting Alarms Challenges I find are ordering the materials and keeping on track with all that. And then the storage and carrying it back and forth and there s some heavy bottles involved You know most people don t like to see blood let alone stick a needle in their arm Not necessarily restrictive because you can find places to do dialysis but there s an additional cost and additional factors in order to get things done that way Obviously during the treatment when there s alarms those become the most challenging because you only have a certain amount of time

18 Perceived Severity Mindset Compulsory for Survival You can get depression being on the machine because you re now stuck with that lifestyle. But then you have to look at being on the machine as a second wind of life, because without the machine you wouldn t be around. You can t just pick up and go, so you are attached to your machine in a way for survival.

19 Self-Efficacy Confidence with Experience Caregiver Support Vascular Access it took a while before you learned all the issues that could happen and how you could fix them on your own you actually have to go through them and learn from that. just having a person there to be with them all the time and giving them support when it is needed I think is a big advantage. I have a line [CVC] and I do everything on my own, totally independent

20 Table 2 Trustworthiness Criteria Criteria Definition Techniques Credibility Confidence in the truth: of the findings - Prolonged engagement - Persistent observation Transferability Dependability Confirmability Showing that the findings have applicability in other contexts Showing that the findings are consistent and could be repeated A degree of neutrality or the extent to which the findings of a study are shaped by the respondents and not researcher bias, motivation, or interest. - Thick description - External audits - Audit trail - Reflectivity

21 Strengths Open-ended questions although their responses may not have matched with the specific question asked, it brought their foremost thoughts to the surface. Findings did not emerge only at the last stages of research and the interview itself acted as an interactive learning tool. Adding HBM constructs demonstrates the genuine importance to comprehend the rich qualitative data Interviewing twenty participants and reaching data saturation was a significant advantage and represented approximately 40% of HHD patients at the community based hospital.

22 Limitations Non-randomization sampling method due to the nature of the dialysis cohort. If the HBM framework was not used results may have varied Excluding patients lacking English literacy eliminated possible communications barriers Potential Bias Response bias- patients may not have been entirely truthful Instrument bias- PI personally collected, analyzed and interpreted the data

23 Research Implications Theoretical Implications: Qualitative research seeks to understand meaning, and we investigate what it means to live as a HHD patient. 4 HBM constructs represent highlights (both negative and positive) as perceived by a HHD patient and together shape their lived experience. Practical Implications: ORN Priority enhance autonomy, quality of life, and improve uptake of independent dialysis. Highlight benefits / Reduce barriers This research provides a foundation for developing practical solutions to retain HHD patients and improve their experience.

24 Future Research Education Investigate the impact of current education programs, real-time access to training. Caregiver Support Multiple caregivers, does in-home support allow more patients to adopt HHD? Health Benefits Confirm physical health benefits associated with HHD. Water Treatment Investigate the frequency and reoccurrence of plumbing issues and strategies for improving reliability. Electronic Data Sharing Explore opportunities for an electronic tracking system. How might technology improve a patients experience?

25 What I tell people it s like brushing your teeth. It s part of your routine you just do it

26 References Cafazzo, J. A., Leonard, K., Easty, A. C., Rossos, P. G., & Chan, C. T. (2009, January). Patient-perceived barriers to the adoption of nocturnal home hemodialysis. Clin J Am Soc Nephrol, 4, Holly, J. L., & Sinnakirouchenan, R. (2011, November). Peritoneal Dialysis Versus Hemodialysis: Risks, Benefits, and Access Issues. Advances in Chronic Kidney Disease, 18, Ontario Renal Network (2011). By the numbers: Proportion of patients by modality. Retrieved from Ontario Renal Network (2013). Proportion of incident hemodialysis patients by vascular access type and CKD regional program, Ontario, FY12/13. Retrieved from McFarlane, P. A., Bayoumi, A. M., Pierratos, A., & Redelmeier, D. A. (2003, April 23). The quality of life and cost utility of home nocturnal and conventional in-center hemodialysis. Kidney International, 64, McFarlane, P., & Komenda, P. (2011). Economic considerations in frequent home hemodialysis. Seminars in Dialysis, 24, Retrieved from McFarlane, P. A., Pierratos, A., & Redelmeier, D. A. (2002). Cost Savings of Home Nocturnal Versus Conventional In-Center Hemodialysis. Kidney International, 62, Mclaughlin, K., Manns, B., Morris, G., Hons, R., & Taub, K. (2003, February). Why Patients with ESRD do not Select Self-Care Dialysis as a Treatment Option. Amrican Journal of Kidney Diseases, 41, Morton, R. L., Snelling, P., Webster, A. C., Rose, J., Materson, R., Johnson, D. W., & Howard, K. (2012). Dialysis modality preference of patients with CKD and family caregivers: A discreate-choice study. Am J Kidney Dis., 60(1), from Rioux, J., Cheema, H., Bargman, J. M., Watson, D., & Chan, C. T. (2011). Effect of an In-Hospital Chronic Kidney Disease Education Program amoung Patients with Unplanned Urgent-Start Dialysis. Clin J Am Soc Nephrol, 6, Thodis, E. D., & Oreopoulos, D. G. (2011). Home dialysis first: A new paradigm for new ESRD patients. JNephrol, 24(04), Woods, J. D., Port, F. K., Stannard, D., Blagg, C. R., & Held, P. J. (1996, December 4). Comparison of mortality with home hemodialysis and center hemodialysis: A national study. Kidney International, 49, Retrieved from, Zhang, A., Bargman, J. M., Lok, C. E., Porter, E., Mendez, M., Oreopoulous, D. G., & Chan, C. T. (2010, June 20). Dialysis Modality Choices Amoung Chronic Kidney Disease Patients: Identifying the Gaps to Support Patients on Home-Based Therapies. Int Urol Nephrol,

27 Thank You!