ACTIVITY IDEASfor children with Chronic Kidney Disease (CKD)

A guide for Health Professionals

How can physical activity benefit children and adolescents with CKD? Daily physical activity has been shown to benefit children and adolescents with CKD and those on dialysis as well as post renal transplant in the following ways:

Children and adolescents with CKD, on dialysis or post-transplant who were able to increase their level of physical activity had improvements in walk speed and distance in the 6 minute walk test (6MWT) indicating improved physical functioning.1,2

Aerobic and resistance exercise for one hour, twice a week over 3 months during haemodialysis significantly improved walk distance and gait speed, as well as increased lower leg strength and moderate improvements in hand grip strength for children and adolescents.7

Intradialytic cycling for 30 minutes, 2-3 times a week over 3 months in children and adolescents on haemodialysis resulted in benefits of 5% improved walk distance and gait speed (6MWT), and 30% increased lower leg strength (improved chair to stand test).9

Exercise sessions for 1 hour twice a week for 12 weeks for children and adolescents on dialysis showed an increase in aerobic capacity and muscle strength for those who completed the study.12

Quality of life score was raised with increased physical activity levels post-transplant showing benefits to social wellbeing and self-confidence.6

What is the current situation regarding physical activity and children with CKD? There are many barriers to exercise for children with CKD and those on dialysis. Low energy levels, nausea, time constraints with the demands of management, and a lack of motivation are the main reasons, as well as a lack of knowledge about the safety and benefits of participation in physical activity.4,1,2,5,14 As a result, children with CKD and those on dialysis spend less time being physically active in moderate to high intensity activities than their peers. According to research, they have significantly lower step counts when tracked with pedometers over a week and are not meeting National Guidelines for Physical Activity.1,2,5,8

In early stages of CKD, aerobic capacity is similar to healthy controls13, but as renal impairment progresses, fitness levels decline. Children on dialysis have a lower walk test distance and reduced gait speed compared with healthy children. Even after renal transplant, physical activity levels tend to be lower than that of peers and sports competence and conditioning is reduced.4,6,8

Cardiorespiratory function is lower for children with CKD and for children on dialysis, with earlier time to fatigue during a treadmill test than children with normal renal function. Endurance, gait speed and physical functioning are consistently low.10,13

Where children in early stages of CKD have muscle mass similar to healthy controls, as CKD progresses, grip strength and muscle mass declines.3,11 Fat mass is relatively high regardless of BMI (weight for height ratio).11 Low levels of activity during post-transplant recovery and rapid weight gain contribute to continued low muscle mass and high fat mass post-transplant.

In early stages of CKD, aerobic capacity is similar to healthy controlsIn early stages of CKD, aerobic capacity is similar to healthy controls13, but as renal impairment progresses, 13, but as renal impairment progresses, 13, but as renal impairment progresses, , but as renal impairment progresses,

For optimum health, physical activity needs to be part of the health plan for children

and adolescents with CKD

1.ACTIVITY IDEAS Guide for Health Professionals

Information devised and shared by Sheridan Collins, Paediatric Renal Dietitian, The Children’s Hospital at Westmead, Australia

DRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFT Intradialytic cycling for 30 minutes, 2-3 times a week over 3 months in children and adolescents on

DRAFT Intradialytic cycling for 30 minutes, 2-3 times a week over 3 months in children and adolescents on haemodialysis resulted in benefits of 5% improved walk distance and gait speed (6MWT), and 30%

DRAFT haemodialysis resulted in benefits of 5% improved walk distance and gait speed (6MWT), and 30%

Exercise sessions for 1 hour twice a week for 12 weeks for children and adolescents on dialysis showed

DRAFT Exercise sessions for 1 hour twice a week for 12 weeks for children and adolescents on dialysis showed an increase in aerobic capacity and muscle strength for those who completed the study.

DRAFT an increase in aerobic capacity and muscle strength for those who completed the study.12

DRAFT12

Quality of life score was raised with increased physical activity levels post-transplant showing benefits

DRAFT Quality of life score was raised with increased physical activity levels post-transplant showing benefits

What is the current situation regarding physical activity and

DRAFTWhat is the current situation regarding physical activity and

There are many barriers to exercise for children with CKD and those on dialysis. Low energy levels, nausea, time

DRAFTThere are many barriers to exercise for children with CKD and those on dialysis. Low energy levels, nausea, time constraints with the demands of management, and a lack of motivation are the main reasons, as well as a lack

DRAFTconstraints with the demands of management, and a lack of motivation are the main reasons, as well as a lack of knowledge about the safety and benefits of participation in physical activity.

DRAFTof knowledge about the safety and benefits of participation in physical activity.4,1,2,5,14

DRAFT4,1,2,5,14 As a result, children with CKD

DRAFT As a result, children with CKD

and those on dialysis spend less time being physically active in moderate to high intensity activities than their

DRAFTand those on dialysis spend less time being physically active in moderate to high intensity activities than their peers. According to research, they have significantly lower step counts when tracked with pedometers over a week

DRAFTpeers. According to research, they have significantly lower step counts when tracked with pedometers over a week and are not meeting National Guidelines for Physical Activity.

DRAFTand are not meeting National Guidelines for Physical Activity.1,2,5,8

DRAFT1,2,5,8

In early stages of CKD, aerobic capacity is similar to healthy controlsDRAFTIn early stages of CKD, aerobic capacity is similar to healthy controlsfitness levels decline. Children on dialysis have a lower walk test distance and reduced gait speed compared with DRAFTfitness levels decline. Children on dialysis have a lower walk test distance and reduced gait speed compared with healthy children. Even after renal transplant, physical activity levels tend to be lower than that of peers and sports DRAFThealthy children. Even after renal transplant, physical activity levels tend to be lower than that of peers and sports competence and conditioning is reduced.DRAFTcompetence and conditioning is reduced.

Cardiorespiratory function is lower for children with CKD and for children on dialysis, with earlier time to fatigue DRAFTCardiorespiratory function is lower for children with CKD and for children on dialysis, with earlier time to fatigue during a treadmill test than children with normal renal function. Endurance, gait speed and physical functioning DRAFTduring a treadmill test than children with normal renal function. Endurance, gait speed and physical functioning DRAFTIn early stages of CKD, aerobic capacity is similar to healthy controlsDRAFTIn early stages of CKD, aerobic capacity is similar to healthy controlsDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFT

For optimum health, physical activity needs

DRAFTFor optimum health, physical activity needs to be part of the health plan for children DRAFTto be part of the health plan for children

and adolescents with CKDDRAFTand adolescents with CKD

How might our health service team promote physical activity for childrenand adolescents with CKD?The health service team could promote the physical activity for children and adolescents with CKD and those on dialysis in these ways:

Reassure families directly that activity is safe for their child.

Explain to families that all children need to be physically active as part of their normal daily routine.

Let families know about the wider benefits of physical activity – on growth, and motor function as well as the benefits of social interaction and more positive mental health.

Discuss with families the long-term benefits of physical activity – cardiovascular health, bone strength and weight maintenance.

Develop a culture that promotes physical activity from the whole medical and allied health team.

How might our health service team promote physical activity for childrenHow might our health service team promote physical activity for childrenHow might our health service team promote physical activity for childrenHow might our health service team promote physical activity for children

At all stages of renal impairment, physical activity has been shown to

benefit health and well being

Set fun challenges Including fitness tests as part of the regular health appointment:

as a progress marker, a source of motivation, and fun for children and adolescents!

6 minute walk Mark out a 20 metre track in the corridor – how far can you walk in 6 minutes?

Tests endurance and physical functioning.

30 second Chair Stand test How many times can you stand up from a chair in 30 seconds? Tests lower leg strength.

Hand grip strength Tested using manometers. Results can be followed to track progress.

Repeat every month over 3 months for short term motivation, or annually for an ongoing progress check.

What is effective in motivating families to be active?Potential incentives to motivate higher activity levels include:

Stressing the importance of keeping up with activities if renal function is declining, to make it easier to resume activity post-transplant.

Suggesting the use of weekly goal setting and monitoring with pedometers for patients with CKD was effective in increasing walk distance and speed and improving physical functioning.1,2

Electronic motivational devices can be effective in increasing physical activity in school aged children with CKD (Mepstead & Collins, unpublished).

Encouraging families to be involved in activity together to achieve activity goals.

2.ACTIVITY IDEAS Guide for Health Professionals

DRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFT Discuss with families the long-term benefits of physical activity – cardiovascular health, bone strength

DRAFT Discuss with families the long-term benefits of physical activity – cardiovascular health, bone strength

Develop a culture that promotes physical activity from the whole medical and allied health team.

DRAFT Develop a culture that promotes physical activity from the whole medical and allied health team.

Set fun challenges

DRAFTSet fun challenges Including fitness tests as part of the regular health appointment:

DRAFTIncluding fitness tests as part of the regular health appointment: as a progress marker, a source of motivation, and fun for children and adolescents!

DRAFTas a progress marker, a source of motivation, and fun for children and adolescents!

6 minute walk

DRAFT6 minute walk

Mark out a 20 metre track in the corridor – how far can you walk in 6 minutes?

DRAFTMark out a 20 metre track in the corridor – how far can you walk in 6 minutes?

Tests endurance and physical functioning.

DRAFTTests endurance and physical functioning.

30 second Chair Stand test

DRAFT30 second Chair Stand test

How many times can you stand up from a chair in 30 seconds? Tests lower leg strength.

DRAFTHow many times can you stand up from a chair in 30 seconds? Tests lower leg strength.

Hand grip strength

DRAFTHand grip strength

Tested using manometers. Results can be followed to track progress.

DRAFTTested using manometers. Results can be followed to track progress.

Repeat every month over 3 months for short term motivation,

DRAFTRepeat every month over 3 months for short term motivation,

or annually for an ongoing progress check. DRAFTor annually for an ongoing progress check.

What is effective in motivating families to be active?DRAFTWhat is effective in motivating families to be active?Potential incentives to motivate higher activity levels include: DRAFTPotential incentives to motivate higher activity levels include:

Stressing the importance of keeping up with activities if renal function is declining, to make it easier to DRAFT Stressing the importance of keeping up with activities if renal function is declining, to make it easier to resume activity post-transplant. DRAFT resume activity post-transplant. DRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFTDRAFT

1. Akber A, Portale AA, Johansen KL Pedometer-assessed physical activity in children and young adults with CKD. Clinical Journal of the American Society of Nephrology. 2012;7(5):720-62. Akber A, Portale AA, Johansen KL. Use of pedometers to increase physical activity among children and adolescents with chronic kidney disease. Pediatric Nephrology. 2014;29(8):1395-402. PubMed PMID:246481293. Alayli G, Ozkaya O, Bek K, Calmasur A, Diren B, Bek Y, et al. Physical function, muscle strength and muscle mass in children on peritoneal dialysis. Pediatr Nephrol. 2008 Apr;23(4):639-44. PubMed PMID: 18197422. Epub 2008/01/17. Eng.4. Clark CG, Cantell M, Crawford S, Hamiwka LA. Accelerometry-based physical activity and exercise capacity in pediatric kidney transplant patients. Pediatr Nephrol, 2012:27:659-6655. Eijsermans RM, Creemers DG, Helders PJ, Schroder CH. Motor performance, exercise tolerance, and health related quality of life in children on dialysis. Pediatr Nephrol. 2004 Nov;19(11):1262-6.PubMed PMID: 15368119.Epub 2004\09\16. eng6. Hamiwka LA, Cantgell M, Crawford S, Clark CG. Physical activity and health related quality of life in children following kidney transplatntation. Pediatr Transplant. 2009 Nov;13(7):861-7. PubMed PMID: 19497018. Epub 2009/06/06. eng7. Goldstein SL, Montgomery LR. A pilot study of twice-weekly exercise during hemodialysis in children. Pediatr Nephrol. 2009 Apr;24(4):833-9. PubMed PMID: 19093138. Epub 2008/12/19. eng8. Painter P, Krasnoff J, Mathias R. Exercise capacity and physical fi tness in pediatric dialysis and kidney transplant patients. Pediatric Nephrology. 2007;22(7):1030-9. PubMed PMID: 17372771.9. Pagliagonga F, Lopopolo A, Scarfi a RV, Consolo S, Galli MA, Salera S, eg al. Intradialytic cycling in children and young adults on chronic hemodialysis. Pediatric Nephrology.29(3):431-8. PubMed PMID:2425359110. Pattaragarn A, Warady BA, Sabath RJ. Exercise capacity in pediatric patients with end-stage renal disease. Peritoneal dialysis international: journal of the International Society for Peritoneal Dialysis. 2004 May-Jun;24(3):274-80. PubMed PMID: 15185776. Epub 2004/06/10.eng 11. Rashid R, Neill E, Smith W, King D, Beattie TJ, Murphy A, et al. Body composition and nutritional intake in children with chronic kidney disease. Pediatric Nephrology. 2006;21(11):1730-8.12. Van Bergen M, Takken T, Engelbert R, Groothoff J, Nauta J, Van Hoeck K, et al. Exercise training in pediatric patients with end-stage renal disease. Pediatr Nephrol. 2009 Mar;24(3):619-22. PubMed PMID:18839217. Epub 2008/10/08. eng.13. Weaver, DJ, Jr., Kimball TR, Knilans T, Mays W, Knecht SK, Gerdes YM et al. Decreased maximal aerobic capacity in pediatric chronic kidney disease. Journal of the American Society of Nephrology: JASN. 2008 Mar;19(3)14. Wolf MF, George RP, Warshaw B, Want E, Greenbaum LA. Physical Activity and Kidney Injury in Pediatric and Young Adult Kidney Transplant Recipients. J Pediatr 2016; 179:90-5

3.ACTIVITY IDEAS Guide for Health Professionals

How much activityis recommended?

Build up from wherever the family are right now

Set limits on sedentary timeto 2 hours a day maximum

Aim to meet National Guidelines for Physical Activity – 60 minutes per day

(https://www.nhs.uk/live-well/exercise)

Further strategies to motivate adolescents…

Individual sessions with adolescents may be more effective than when seen with parents

Frequent follow up is more effective rather than duration of therapy

Self-monitoring has been found to be effective in helping adolescents stick to goals

Making a commitment by setting a specific activity, place and time; this helps adolescents plan their activities and fit it into their daily

routine. helps adolescents fit activity into their routine

Ideas for goal setting:Sit down with the child and family to

set goals for physical activity (for the whole family!)

Work with the child’s interests - what activities are they interested in doing?

Draw on the families’ knowledge of local area and environment – what might be available locally?

Ensure that goals are SMART – specific, measurable, achievable, realistic/relevant and time-bound

Record a written schedule and ask thefamily to keep it in a prominent place where they

can easily refer to it (e.g. on the refrigerator)

Review progress at the next visit. Show interest and positivity in the family’s progress with their goals by enquiring at follow up visits

Enjoyment is key in choosing activities!

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1. Akber A, Portale AA, Johansen KL Pedometer-assessed physical activity in children and young adults with CKD. Clinical Journal of the American Society of Nephrology. 2012;7(5):720-6DRAFT1. Akber A, Portale AA, Johansen KL Pedometer-assessed physical activity in children and young adults with CKD. Clinical Journal of the American Society of Nephrology. 2012;7(5):720-62. Akber A, Portale AA, Johansen KL. Use of pedometers to increase physical activity among children and adolescents with chronic kidney disease. Pediatric Nephrology. 2014;29(8):1395-402. DRAFT2. Akber A, Portale AA, Johansen KL. Use of pedometers to increase physical activity among children and adolescents with chronic kidney disease. Pediatric Nephrology. 2014;29(8):1395-402. PubMed PMID:24648129DRAFTPubMed PMID:246481293. Alayli G, Ozkaya O, Bek K, Calmasur A, Diren B, Bek Y, et al. Physical function, muscle strength and muscle mass in children on peritoneal dialysis. Pediatr Nephrol. 2008 Apr;23(4):639-44. DRAFT3. Alayli G, Ozkaya O, Bek K, Calmasur A, Diren B, Bek Y, et al. Physical function, muscle strength and muscle mass in children on peritoneal dialysis. Pediatr Nephrol. 2008 Apr;23(4):639-44. PubMed PMID: 18197422. Epub 2008/01/17. Eng.DRAFTPubMed PMID: 18197422. Epub 2008/01/17. Eng.4. Clark CG, Cantell M, Crawford S, Hamiwka LA. Accelerometry-based physical activity and exercise capacity in pediatric kidney transplant patients. Pediatr Nephrol, 2012:27:659-665DRAFT4. Clark CG, Cantell M, Crawford S, Hamiwka LA. Accelerometry-based physical activity and exercise capacity in pediatric kidney transplant patients. Pediatr Nephrol, 2012:27:659-6655. Eijsermans RM, Creemers DG, Helders PJ, Schroder CH. Motor performance, exercise tolerance, and health related quality of life in children on dialysis. Pediatr Nephrol. 2004 Nov;19(11):1262-6.DRAFT5. Eijsermans RM, Creemers DG, Helders PJ, Schroder CH. Motor performance, exercise tolerance, and health related quality of life in children on dialysis. Pediatr Nephrol. 2004 Nov;19(11):1262-6.PubMed PMID: 15368119.Epub 2004\09\16. engDRAFTPubMed PMID: 15368119.Epub 2004\09\16. eng6. Hamiwka LA, Cantgell M, Crawford S, Clark CG. Physical activity and health related quality of life in children following kidney transplatntation. Pediatr Transplant. 2009 Nov;13(7):861-7. PubMed DRAFT6. Hamiwka LA, Cantgell M, Crawford S, Clark CG. Physical activity and health related quality of life in children following kidney transplatntation. Pediatr Transplant. 2009 Nov;13(7):861-7. PubMed PMID: 19497018. Epub 2009/06/06. engDRAFTPMID: 19497018. Epub 2009/06/06. eng7. Goldstein SL, Montgomery LR. A pilot study of twice-weekly exercise during hemodialysis in children. Pediatr Nephrol. 2009 Apr;24(4):833-9. PubMed PMID: 19093138. Epub 2008/12/19. engDRAFT7. Goldstein SL, Montgomery LR. A pilot study of twice-weekly exercise during hemodialysis in children. Pediatr Nephrol. 2009 Apr;24(4):833-9. PubMed PMID: 19093138. Epub 2008/12/19. eng8. Painter P, Krasnoff J, Mathias R. Exercise capacity and physical fi tness in pediatric dialysis and kidney transplant patients. Pediatric Nephrology. 2007;22(7):1030-9. PubMed PMID: 17372771.DRAFT8. Painter P, Krasnoff J, Mathias R. Exercise capacity and physical fi tness in pediatric dialysis and kidney transplant patients. Pediatric Nephrology. 2007;22(7):1030-9. PubMed PMID: 17372771.9. Pagliagonga F, Lopopolo A, Scarfi a RV, Consolo S, Galli MA, Salera S, eg al. Intradialytic cycling in children and young adults on chronic hemodialysis. Pediatric Nephrology.29(3):431-8. PubMed DRAFT9. Pagliagonga F, Lopopolo A, Scarfi a RV, Consolo S, Galli MA, Salera S, eg al. Intradialytic cycling in children and young adults on chronic hemodialysis. Pediatric Nephrology.29(3):431-8. PubMed PMID:24253591DRAFTPMID:2425359110. Pattaragarn A, Warady BA, Sabath RJ. Exercise capacity in pediatric patients with end-stage renal disease. Peritoneal dialysis international: journal of the International Society for Peritoneal DRAFT10. Pattaragarn A, Warady BA, Sabath RJ. Exercise capacity in pediatric patients with end-stage renal disease. Peritoneal dialysis international: journal of the International Society for Peritoneal Dialysis. 2004 May-Jun;24(3):274-80. PubMed PMID: 15185776. Epub 2004/06/10.eng DRAFTDialysis. 2004 May-Jun;24(3):274-80. PubMed PMID: 15185776. Epub 2004/06/10.eng 11. Rashid R, Neill E, Smith W, King D, Beattie TJ, Murphy A, et al. Body composition and nutritional intake in children with chronic kidney disease. Pediatric Nephrology. 2006;21(11):1730-8.DRAFT11. Rashid R, Neill E, Smith W, King D, Beattie TJ, Murphy A, et al. Body composition and nutritional intake in children with chronic kidney disease. Pediatric Nephrology. 2006;21(11):1730-8.12. Van Bergen M, Takken T, Engelbert R, Groothoff J, Nauta J, Van Hoeck K, et al. Exercise training in pediatric patients with end-stage renal disease. Pediatr Nephrol. 2009 Mar;24(3):619-22. DRAFT12. Van Bergen M, Takken T, Engelbert R, Groothoff J, Nauta J, Van Hoeck K, et al. Exercise training in pediatric patients with end-stage renal disease. Pediatr Nephrol. 2009 Mar;24(3):619-22. PubMed PMID:18839217. Epub 2008/10/08. eng.DRAFTPubMed PMID:18839217. Epub 2008/10/08. eng.13. Weaver, DJ, Jr., Kimball TR, Knilans T, Mays W, Knecht SK, Gerdes YM et al. Decreased maximal aerobic capacity in pediatric chronic kidney disease. Journal of the American Society of DRAFT13. Weaver, DJ, Jr., Kimball TR, Knilans T, Mays W, Knecht SK, Gerdes YM et al. Decreased maximal aerobic capacity in pediatric chronic kidney disease. Journal of the American Society of DRAFTDRAFTEnsure that goals are SMART – specific, measurable,

DRAFTEnsure that goals are SMART – specific, measurable, Ensure that goals are SMART – specific, measurable, achievable, realistic/relevant and time-bound

DRAFTachievable, realistic/relevant and time-boundachievable, realistic/relevant and time-bound

Record a written schedule and ask the

DRAFTRecord a written schedule and ask theRecord a written schedule and ask the

family to keep it in a prominent place where they

DRAFTfamily to keep it in a prominent place where they family to keep it in a prominent place where they

can easily refer to it (e.g. on the refrigerator)

DRAFTcan easily refer to it (e.g. on the refrigerator)can easily refer to it (e.g. on the refrigerator)

Review progress at the next visit. Show interest

DRAFTReview progress at the next visit. Show interest Review progress at the next visit. Show interest

and positivity in the family’s progress with

DRAFTand positivity in the family’s progress with and positivity in the family’s progress with their goals by enquiring at follow up visits

DRAFTtheir goals by enquiring at follow up visitstheir goals by enquiring at follow up visits

Enjoyment is key in choosing activities!

DRAFTEnjoyment is key in choosing activities!Enjoyment is key in choosing activities!

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