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4.8. Patient experience of dialysis (Guidelines 8.1 – 8.4)

4.8. Patient experience of dialysis (Guidelines 8.1 – 8.4)

Guideline 8.1 Home haemodialysis

We recommend that home haemodialysis should be available in all units as part of a comprehensive renal replacement therapy programme. [1A]

We suggest training patients and/or care partners to achieve a defined set of competencies, using an individualised approach to training method and speed. [2D]

We suggest units form a contract with patients outlining responsibilities, including an agreement to dialyse as per prescription and trained technique, and including a policy for re imbursement of directly arising patient costs. [2D]

We suggest supporting patients with a specific team including nephrologists, technicians, and nurses, with rapid access to dialysis in centre when required. [2C]

We suggest an agreed individualised prescription for home haemodialysis, taking into account lifestyle goals, with the same dose and time target considerations as centre based patients. [2C]

We recommend enhanced safety measures for patients who dialyse alone or overnight, and an enhanced risk assessment for patients with blood borne viruses. [1C]

Rationale

There is increasing evidence of the benefits of augmented haemodialysis schedules, in terms of both outcome and health related quality of life, but providing more frequent dialysis in centre is a challenge in the UK, and it is widely recognised that augmented schedules are most easily accommodated in the home setting (1 6). The literature on home haemodialysis and augmented schedules therefore overlaps substantially, but home haemodialysis additionally is increasingly acknowledged to provide a level of convenience and flexibility not achievable in centre.

Despite these benefits the penetration of home haemodialysis in the UK remains low, comprising only 0.4% of incident and 2% of prevalent dialysis patients. Many organisations such as NICE and KDIGO promote universal availability for clinically suitable patients, acknowledging that collaborative working between centres maybe required (7,8). But it is clear from registry data that variability of access still exists, with some centres not offering this modality, and considerable variation in uptake between centres.

Home haemodialysis patients must be able to manage their dialysis safely, and monitor their condition. Modality decisions should be supported by a full assessment of clinical and social circumstances, as well as the home environment, including a discussion of the impact of therapy on others within the household (9). It is essential that patient and carer expectations and fears are appropriately addressed before commencing training (13). Few data are available to guidance on clinical suitability, but the ability to complete training may be more important than clinical diagnosis: a number of programmes have reported that patients with complex comorbidities can improve with more frequent therapy, more tailored to their needs (19,20).

Training on a ‘1 to 1′ basis with a specific training staff is widely accepted as optimal, with the learning style and training duration adapted to the individual (17). Type of vascular access should not be a limiting factor, but appropriate training, surveillance and technique assessment form essential parts of the home haemodialysis programme (21,22).

The success of a home haemodialysis programme is dependent upon a skilled and specific multi disciplinary team facilitating education, training and patient support in the community, and optimal individual outcomes are dependent on patient understanding, and appropriate cooperative liaison with this support (14). This may be facilitated with an explicit contract, so that the manner in which this clinical responsibility is shared is clear. The financial responsibility for treatment rests with the provider, and re imbursement of directly arising patient costs should be readily available (10).

A home haemodialysis Programme requires adequate medical, nursing and technical support, and should support at least 12 to 20 patients, and train at least 10 patients per year in order to maintain appropriate staff expertise and cost effectiveness, so smaller renal units may find it more appropriate to share resources with other centres. Minimum safe staff to patient ratios are not well defined, but recommendations for peritoneal dialysis (such as minimum of 1 nurse per 20 patients) may be relevant (14 16). However, as training for home haemodialysis is more complex, additional staffing should be considered to ensure that training new patients does not detract from the support of established patients (13). Patient mix should also be considered, so that programmes with a greater number of complex patients are staffed more favourably (21,23).

Home haemodialysis patients should receive the same level of medical supervision, and the same monitoring and dose considerations as in centre patients, and as for other patients, the schedule should be individualised depending on patient values and therapeutic goals. Dialysis dose should be quantified as for other augmented schedules, but should be interpreted with the flexibility of the patient’s schedule also in mind. To ensure that the home dialysis team can provide the best possible support that is responsive to the individual, recording of sessional details by the patient or carer is desirable (28).

Specific circumstances may require additional risk assessments and/or additional measures: enhanced safety measures, for example to detect disconnection, should be available for patients dialysing alone or overnight, and protection of household contacts of patients with blood borne viruses should be considered, particularly for those directly involved in therapy (21,24,25,26).

References

  1. Culleton BF, Walsh M, Klarenbach SW, Mortis G, Scott Douglas N, Quinn RR, et al. Effect of frequent nocturnal haemodialysis vs conventional haemodialysis on left ventricular mass and quality of life: a randomized controlled trial. JAMA. 2007 Sep 19;298(11):1291–9.
  2. Finkelstein FO, Schiller B, Daoui R, Gehr TW, Kraus MA, Lea J, et al. At home short daily haemodialysis improves the long term health related quality of life. Kidney Int. 2012 Sep;82(5):561–9.
  3. Jefferies HJ, Virk B, Schiller B, Moran J, McIntyre CW. Frequent haemodialysis schedules are associated with reduced levels of dialysis induced cardiac injury (myocardial stunning). Clin J Am Soc Nephrol CJASN. 2011 Jun;6(6):1326–32.
  4. FHN Trial Group, Chertow GM, Levin NW, Beck GJ, Depner TA, Eggers PW, et al. In center haemodialysis six times per week versus three times per week. N Engl J Med. 2010 Dec 9;363(24):2287–300.
  5. Tennankore KK, Chan CT, Curran SP. Intensive home haemodialysis: benefits and barriers. Nat Rev Nephrol. 2012 Sep;8(9):515–22.
  6. Beard C. No place like home: Increasing access to home dialysis. Available from: http://www.nwcscnsenate.nhs.uk/files/2814/2919/9869/16 04 2015_1557_680.pdf.
  7. Tabinor M, Casula A, Wilkie M, Davies S, Caskey F, Lambie M. UK Renal Registry 19th Annual Report: Chapter 13 Home Therapies in 2015: National and Centre specific Analyses. Nephron. 2017;137 Suppl 1:297–326.
  8. Mitra S. NICE Guidance: Improving Choice for Kidney Patients and Carers Increasing access to home dialysis. NICE. 2011 [cited 2018 Apr 29]. Available from: https://www.nice.org.uk/Contents/Item/Display/30787.
  9. Warwick G, Mooney A, Russon L, Hardy R. Planning, Initiating and Withdrawal of Renal Replacement Therapy.
  10. Jenkins K, Adams A. National home adaptation and reimbursement guidance. J Ren Nurs. 2015 Jul 2;7(4):186–7.
  11. Covic A, Bammens B, Lobbedez T, Segall L, Heimbürger O, van Biesen W, et al. Educating end stage renal disease patients on dialysis modality selection: clinical advice from the European Renal Best Practice (ERBP) Advisory Board. Nephrol Dial Transplant Off Publ Eur Dial Transpl Assoc Eur Ren Assoc. 2010 Jun;25(6):1757–9.
  12. CKD Evaluation and Management [Internet]. KDIGO. [cited 2018 Apr 29]. Available from: http://kdigo.org/guidelines/ckd evaluation and management/.
  13. Improvement Hub » Improving Choice for Kidney Patients: Five STEPS Toolkit to Home Haemodialysis. [cited 2018 Apr 29]. Available from: https://www.england.nhs.uk/improvement hub/publication/improving choice for kidney patients five steps toolkit to home haemodialysis/.
  14. The Renal Team A Multi Professional Renal Workforce Plan For Adults and Children with Renal Disease. [cited 2018 Apr 29]. Available from: http://www.wales.nhs.uk/sites3/documents/434/Workforce.pdf.
  15. Implementing Haemodialysis in the Home: A practical manual [Internet]. [cited 2018 Apr 29]. Available from: http://www.ishd.org/library/pdfs/HomeHemo_AllModules2.pdf.
  16. Clinical Practice Guideline Peritoneal Dialysis in Adults and Children [Internet]. [cited 2018 Apr 29]. Available from: https://renal.org/wp content/uploads/2017/06/final peritoneal dialysis guideline667ba231181561659443ff000014d4d8.pdf.
  17. Rioux J P, Marshall MR, Faratro R, Hakim R, Simmonds R, Chan CT. Patient selection and training for home haemodialysis: Patient selection and training. Hemodial Int. 2015 Apr;19:S71–9.
  18. Rioux JP, Faratro R, Chan CT. Nocturnal home haemodialysis: implementation, quality assurance and future challenges. Minerva Urol E Nefrol Ital J Urol Nephrol. 2010 Mar;62(1):103–10.
  19. Lockridge R, Cornelis T, Van Eps C. Prescriptions for home haemodialysis: Prescriptions for home HD. Hemodial Int. 2015 Apr;19:S112–27.
  20. Fotheringham J, Fogarty DG, El Nahas M, Campbell MJ, Farrington K. The mortality and hospitalization rates associated with the long interdialytic gap in thrice weekly haemodialysis patients. Kidney Int. 2015 Sep;88(3):569–75.
  21. Kraus MA, Kansal S, Copland M, Komenda P, Weinhandl ED, Bakris GL, et al. Intensive Haemodialysis and Potential Risks With Increasing Treatment. Am J Kidney Dis. 2016 Nov;68(5):S51–8.
  22. Faratro R, Jeffries J, Nesrallah GE, MacRae JM. The care and keeping of vascular access for home haemodialysis patients. Hemodial Int. 2015 Apr 1;19(S1):S80–92.
  23. Tong A, Palmer S, Manns B, Craig JC, Ruospo M, Gargano L, et al. The beliefs and expectations of patients and caregivers about home haemodialysis: an interview study. BMJ Open. 2013;3(1):e002148.
  24. Morfin JA, Fluck RJ, Weinhandl ED, Kansal S, McCullough PA, Komenda P. Intensive Haemodialysis and Treatment Complications and Tolerability. Am J Kidney Dis. 2016 Nov;68(5):S43–50.
  25. Achlarska M, Moon S. Identifying and overcoming barriers to solo home haemodialysis. J Kidney Care. 2017 Sep 2;2(5):246–50.
  26. Axley B, Speranza Reid J, Williams H. Venous needle dislodgement in patients on haemodialysis. Nephrol Nurs J J Am Nephrol Nurses Assoc. 2012 Dec;39(6):435–45; quiz 446.
  27. Geddes C, Consultant Nephrologist, NHS Greater Glasgow & Clyde; Lindley E, Duncan N. Available from: https://renal.org/wp content/uploads/2017/06/blood borne viruses 5th edition 1.pdf.
  28. Liu N, Kim J, Jung Y, Arisy A, Nicdao MA, Mikaheal M, et al. Remote Monitoring Systems for Chronic Patients on Home Haemodialysis: Field Test of a Copresence Enhanced Design. JMIR Hum Factors [Internet]. 2017 Aug 29 [cited 2018 Apr 21];4(3). Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5596297/.

Guideline 8.2 Shared haemodialysis care

We suggest that all centre based haemodialysis patients should have opportunity and encouragement to learn aspects of their dialysis treatment, and take an active role in their care. [2D]

Rationale

There is little research that has been directly conducted into shared haemodialysis care; however, there is considerable evidence of the benefits of supported self care in other long term conditions. Low health literacy among dialysis patients is associated with worse survival, whereas self motivation and education can result in better care, for example, in phosphate control and fluid balance. As with the broader NHS, dialysis services are experiencing considerable pressure to deliver high quality in the face of fiscal challenge. An important mechanism to ensure that quality of care is maintained is to engage service users as true partners in their own treatment; self management is an ambition in “Kidney Health: Delivering Excellence.”

To achieve this, healthcare professionals need to enhance their roles, becoming educators and facilitators, supporting patients to take a greater role in their own care, and increasing their opportunities for dialysing at home.

Shared haemodialysis care impacts all domains of health. Central among these are the enhanced patient safety that comes from education on infection control (see the WHO campaign “Save lives: clean your hands”); the enhanced equity of offering all patients training in their treatment rather than only those planning home haemodialysis; and the enhanced experience when patients can put themselves onto dialysis or manage their own alarms without waiting for a nurse.

The process of haemodialysis can be broken down into approximately 14 tasks (Appendix E). The exact arrangements may vary between units, but the concept is essentially the same: that centre based patients are given the opportunity to train to perform one or more of these tasks. It is key that patient involvement is voluntary, and that learning is individualized to the style and speed of the individual. Shared haemodialysis care is associated with a range of barriers and enablers that are best explored through quality improvement work, in order to design favorable conditions for successful implementation.

References

  1. Elliott J, Rankin D, Jacques RM, Lawton J, Emery CJ, Campbell MJ, et al. A cluster randomized controlled non inferiority trial of 5 day Dose Adjustment for Normal Eating (DAFNE) training delivered over 1 week versus 5 day DAFNE training delivered over 5 weeks: the DAFNE 5 x 1 day trial. Diabet Med. 2015;32(3):391 8.
  2. Cavanaugh KL, Wingard RL, Hakim RM, Eden S, Shintani A, Wallston KA, et al. Low health literacy associates with increased mortality in ESRD. J Am Soc Nephrol. 2010;21(11):1979 85.
  3. Umeukeje EM, Merighi JR, Browne T, Victoroff JN, Umanath K, Lewis JB, et al. Self Motivation Is Associated With Phosphorus Control in End Stage Renal Disease. Journal of renal nutrition: the official journal of the Council on Renal Nutrition of the National Kidney Foundation. 2015.
  4. Smith K, Coston M, Glock K, Elasy TA, Wallston KA, Ikizler TA, et al. Patient perspectives on fluid management in chronic haemodialysis. Journal of renal nutrition: the official journal of the Council on Renal Nutrition of the National Kidney Foundation. 2010;20(5):334 41.
  5. Loud F, Gallagher H. Kidney Health: Delivering Excellence. In: Group. TKHA, editor. 2013.
  6. World Health Organisation; [Available from: http://www.who.int/gpsc/5may/en/].
  7. Glidewell L, Boocock S, Pine K, Campbell R, Hackett J, Gill S, et al. Using behavioural theories to optimise shared haemodialysis care: a qualitative intervention development study of patient and professional experience. Implement Sci. 2013;8(1):118.

Guideline 8.3 Intradialytic exercise

We recommend that intradialytic exercise should be available in all units, as a treatment for enhancing physical functioning, in patients without contraindications. [1B]

We suggest that intradialytic exercise be considered as a method of enhancing quality of life. [2C]

We suggest that exercise regimes be devised by appropriately trained staff. [2C]

Rationale

Whilst cardiovascular disease remains the principal cause of death in dialysis patients (1), there is a significant interaction with body composition, with muscle wasting in particular exacerbating mortality (2). Muscle wasting and poor physical fitness also reduce functional abilities including activities of daily living, thus reducing quality of life in haemodialysis patients (18). However, muscle wasting is modifiable by exercise, and epidemiological studies suggest that regular exercise can even reduce mortality (3), but unfortunately, daily physical activity is typically low in haemodialysis patients, perhaps due to the time burden and symptoms associated with treatment (4).

Based on evidence from eight systematic reviews and meta analyses (5 12), analysing data from 1000 adult participants on dialysis, the clinical effectiveness of exercise on physical function and health related quality of life can be summarised as follows:

  1. Despite the high risk status of dialysis patients, no serious exercise related adverse events have been reported from over 30,000 patient hours of exercise observed (8; 10). Adverse events reported include post exercise hypotension, fatigue, myalgias, painful feet, and aggravation of foot ulcers, though not with increased incidence in exercise groups. Compliance with exercise programmes ranged from 43 to 100%, and dropout rates from 15 to 50%.
  2. Short term (2 6 months) prescribed exercise of any type, frequency, and intensity resulted in significant and clinically moderate/large improvement in cardiorespiratory fitness, with a mean increase in peak VO2 of 5ml/kg/min (7; 10).
  3. Any prescribed exercise delivered during haemodialysis sessions produced significant and clinically moderate improvement in muscle strength (9), with a mean increase of 9.9kg (7).
  4. Any type of prescribed exercise consistently produced significant and clinically large improvements in some indices of functional capacity, such as ‘sit to stand’ transfers (11), whereas other indices, such as walking performance, were improved according to some reviews (11) but not others (7; 9).
  5. Self reported physical function was significantly improved in exercising patients (11). This often contributes to quality of life scores, and may therefore explain why some studies conclude that exercise improved quality of life.

Taken together, there is therefore good evidence that the uptake of regular exercise improves physical function and quality of life in haemodialysis patients, without causing significant harm, and that delivery of exercise within haemodialysis sessions can achieve this.

Exercise during the dialysis process may also assist with solute clearance. Enhanced urea clearance is predicted by modelling but an impact on Kt/V is found in some studies (nine of eighteen studies reviewed) but not others (13), whereas improvements in phosphate clearance and serum levels are consistently observed (13 17).

Some evidence suggests the type of exercise most likely to be beneficial: larger improvements were observed with interventions delivering a progressively increasing exercise volume, at least three times per week, for at least 30 minutes, lasting for at least four months, and including an additional resistance training component (8; 10 12). Comparative evidence for specific exercise programmes is currently unavailable, but some guidance on practical implementation of intradialytic exercise is offered in Appendix F.

References

  1. Keith DS, Nichols GA, Gullion CM, Brown JB, Smith DH. Longitudinal follow up and outcomes among a population with chronic kidney disease in a large managed care organization. Arch Intern Med. 2004 Mar 22;164(6):659 63.
  2. Kato A, Odamaki M, Yamamoto T, Yonemura K, Maruyama Y, Kumagai H, Hishida A. Influence of body composition on 5 year mortality in patients on regular haemodialysis. Nephrol Dial Transplant. 2003 Feb;18(2):333 40.
  3. Stack AG, Molony DA, Rives T, Tyson J, Murthy BV. Association of physical activity with mortality in the US dialysis population. Am J Kidney Dis. 2005 Apr;45(4):690 701.
  4. Johansen KL, Chertow GM, Ng AV, Mulligan K, Carey S, Schoenfeld PY, Kent Braun JA. Physical activity levels in patients on haemodialysis and healthy sedentary controls. Kidney Int. 2000 Jun;57(6):2564 70.
  5. Cheema BS, Singh MA. Exercise training in patients receiving maintenance haemodialysis: a systematic review of clinical trials. Am J Nephrol. 2005 Jul Aug;25(4):352 64.
  6. Cheema BS, Chan D, Fahey P, Atlantis E. Effect of progressive resistance training on measures of skeletal muscle hypertrophy, muscular strength, and health related quality of life in patients with chronic kidney disease: A systematic review and meta analysis. Sports Med. 2014 Aug;44(8):1125 36.
  7. Segura Orti E. Exercise in haemodialysis patients: a literature systematic review. Nefrologia, 2010;30(2):236 24.
  8. Heiwe S, Jacobson SH. Exercise training for adults with chronic kidney disease. Cochrane Database Syst Rev. 2011 Oct 5;(10):CD003236.
  9. Heiwe S, Jacobson SH. Exercise training in adults with CKD: a systematic review and meta analysis. Am J Kidney Dis. 2014 Sep;64(3):383 93.
  10. Smart N, Steele M. Exercise training in haemodialysis patients: a systematic review and meta analysis. Nephrology (Carlton). 2011;16(7):626 632.
  11. Sheng K, Zhang P, Chen L, Cheng J, Wu C, Chen J. Intradialytic exercise in haemodialysis patients: a systematic review and meta analysis. Am J Nephrol. 2014;40(5):478 90.
  12. Phan K, Jia F, Kamper SJ. Effects of regular physical exercise training in adults with chronic kidney disease (PEDro synthesis). Br J Sports Med. 2016 Mar;50(5):317 8.
  13. Kirkman DL, Roberts LD, Kelm M, Wagner J, Jibani MM, Macdonald JH. Interaction between intradialytic exercise and haemodialysis adequacy. Am J Nephrol. 2013;38(6):475 82.
  14. Bennett PN, Breugelmans L, Agius M, Simpson Gore K, Barnard B. A haemodialysis exercise programme using novel exercise equipment: a pilot study. J Ren Care. 2007 Oct Dec;33(4):153 8.
  15. Musavian AS, Soleimani A, Masoudi Alavi N, Baseri A, Savari F. Comparing the effects of active and passive intradialytic pedaling exercises on dialysis efficacy, electrolytes, hemoglobin, hematocrit, blood pressure, and health related quality of life. Nurs Midwifery Stud. 2015 Mar;4(1):e25922.
  16. Orcy R, Antunes MF, Schiller T, Seus T, Böhlke M. Aerobic exercise increases phosphate removal during haemodialysis: a controlled trial. Hemodial Int. 2014 Apr;18(2):450 8.
  17. Pellizzaro CO, Thomé FS, Veronese FV. Effect of peripheral and respiratory muscle training on the functional capacity of haemodialysis patients. Ren Fail. 2013;35(2):189 97.
  18. Lowrie EG, Braun Curtin R, Le Pain N, et al. Medical outcomes study Short Form 36: a consistent and powerful predictor of morbidity and mortality in dialysis patients. Am J Kidney Dis. 2003 June;41(6):1286 1292.

Guideline 8.4 Dialysis experience for children and adolescents

We recommend that haemodialysis for children and adolescents should be delivered in a dedicated paediatric dialysis centre or at home, with the involvement of a paediatric multidisciplinary team. [1C]

We recommend that adolescents should commence an active transition programme by 14 years, or at the time of presentation in those already over 14. [1D]

Rationale

Haemodialysis sessions are associated with physical symptoms, social restriction, and loss of control, which for children and adolescents may be particularly depersonalising and unpleasant. These effects may be mitigated by an appropriate environment and trained support staff, and in centre dialysis is therefore best delivered in a dedicated unit, with paediatric nephrologists working alongside the full multidisciplinary team, including nurses, dietitians, psychologists, play therapists, teachers, and social workers (1 3). In this way, children can be supported to reach their full potential despite the burdens of treatment. The first dialysis session is of particular importance in establishing therapeutic trust and parental confidence psychological preparation for this event can alleviate anxiety, reduce symptoms, and improve the tolerability of dialysis.

Children and adolescents can be supported to take on aspects of their own care, often along with parents or guardians, and are likely to gain as much benefit as adults from involvement in a shared care program (4). Home haemodialysis has many advantages for children, allowing an augmented schedule without institutionalisation and providing a flexibility that can reduce the impact of dialysis on social development.

Transition describes the process of preparing adolescents, along with their families, for the move from paediatric to adult care. It should be individualised, taking into consideration the physical and psychological development of the adolescent, and requires a variable amount of time (5). Adolescents will suffer the least disruption if moved to adult care following engagement with a transition programme and should be introduced to the concept of transition in early adolescence (12 14 years). For those over 14 when presenting to paediatric services, transition planning should commence immediately alongside other aspects of care.

References

  1. Fischbach M, Terzic J, Menouer S, Provot E, Bergere V. Haemodialysis in children: principles and practice. Semin Nephrol. 2001;21:470–479.
  2. Watson AR, Thurlby D, Schröder C, Fischbach M, Schaefer F, Edefonti A, Stefanidis CJ, Rönnholm K, Zurowska A. Choice of end stage renal failure therapy in eight European centres. Pediatr Nephrol. 2000;6(5):C38.
  3. Bunchman TE. Pediatric haemodialysis: lessons from the past, ideas for the future. Kidney Int. 1996;53(Suppl):S64–S67.
  4. Watson AR. Strategies to support families of children with end stage renal failure. Pediatr Nephrol. 1995;9:628–631.
  5. Watson AR, Shooter M. Transitioning adolescents from paediatric to adult dialysis units. In: Khanna R, editor. Adv Perit Dial Publications. 1996;12:176–178.