PHYSIOTHERAPY CANADA

Parsons et al. ‘‘A Learned Soul to Guide Me’’: The Voices of Those Living with Kidney Disease Inform Physical Activity Programming 291 patients the option of completing the survey online, on Table 1 Demographic Profile of Survey Participants (n ¼ 63) paper, or over the telephone with a member of the inves- https://utpjournals.press${contentReq.requestUri} - Horizon College Physiotherapy <[email protected]> - Monday, February 22, 2021 10:16:14 PM - IP Address:43.246.243.82 tigative team. Characteristic No. (%) of participants All survey participants provided informed consent. responding* The Queen’s University Health Sciences Research Ethics Board and the ethics boards of the local institutions where Mean age (SD), y† 56 (16)* paper surveys were distributed approved this study. Gender‡ 30 (50) Analysis Male 30 (50) We summarized responses using descriptive statistics Female Ethnicity§ 31 (54.4) for non-continuous and continuous data or thematic Caucasian 10 (17.5) codes for open-text responses. Other 4 (7.0) Black 4 (7.0) RESULTS Prefer not to answer 3 (5.3) South Asian 2 (3.5) Respondents Chinese 1 (1.8) A total of 63 respondents (42 paper and 21 online) Arab/West Asian 1 (1.8) Japanese 1 (1.8) met the inclusion criteria for the study. They had, on Filipino average, a mean age of 56 (SD 16) years, and 50% were Language preference¶ 59 (95.2) female (see Table 1). Respondents reported currently re- English 1 (1.6) ceiving a variety of renal replacement therapies; however, French 2 (3.2) the majority (61%) were receiving in-centre hemodialysis. Other Although the largest proportion of respondents identified Current treatment of kidney disease** 35 (61.4) as Caucasian (54%), the balance consisted of respondents In-centre hemodialysis 11 (19.3) who identified as Arab/West Asian (2%), Japanese (2%), Kidney transplant 4 (7.0) Filipino (2%), Chinese (4%), South Asian (5%), Black Home hemodialysis 4 (7.0) (7%), and other (18%). Approximately 66% of the survey Peritoneal dialysis 3 (5.3) respondents had received at least some post-secondary Predialysis education. Employment status varied: 36% were retired, Highest education received†† 16 (27.1) 24% were currently employed at some level, 5% were Completed undergraduate degree 12 (20.3) students, and 19% were receiving disability benefits. It is Completed high school or equivalent 9 (15.3) important to note that although we provided a ‘‘prefer Completed college diploma programme 8 (13.6) not to answer’’ option for questions related to educa- Completed graduate degree 6 (10.2) tional background, employment status, ethnicity, and Some college or university credits (did not graduate) 4 (6.8) household income, some data were missing (13%–16%) Some high school credits (did not graduate) 3 (5.1) for these variables. Elementary school 1 (1.7) Prefer not to answer Current level of physical activity Current employment status‡‡§§ 21 (36.2) Of the respondents, 52 reported performing moderate- Retired 11 (19.0) Ontario Disability Support Program 8 (13.8) intensity PA, with a mean of 131 minutes per week. How- Not employed, but looking for work 7 (12.1) ever, these results were not normally distributed (range Not employed, not looking for work 6 (10.3) 0–1,050 min/wk; median 90 min/wk; interquartile range Employed full time 6 (10.3) 120 min/wk). Furthermore, 84% of the 61 respondents Self-employed 3 (5.2) who answered this item indicated that they did not in- Student 2 (3.4) clude strength training as part of their PA programme. Employed part time 2 (3.4) Prefer not to answer 1 (1.7) Only 48 participants responded to the question asking Homemaker what information about PA they had received to date from their renal team; the majority reported either very Note: Percentages may not total 100 because of rounding. little information (9%) or no information (48%). Among *Unless otherwise indicated. those who acknowledged receiving PA education from †n ¼ 61; ‡n ¼ 60; §n ¼ 57; ¶n ¼ 62; **n ¼ 57; ††n ¼ 59; ‡‡n ¼ 58; their renal team (9%), the most commonly reported §§Participants could select more than one response. message was to ‘‘walk and keep active.’’ Only 3% of the respondents reported receiving a specific prescription With respect to existing resources for PA, 48% of the for exercise from their renal team. However, another respondents reported having access to exercise equip- 15% identified having received this information from ment, and 34% reported having access to existing pro- a different resource, such as a cardiac rehabilitation grammes to help them become more physically active centre, the local Community Care Access Program, or in their community. However, 26% reported being un- another community-based programme. sure of what resources existed in their local community. A full 73% of the survey respondents indicated that they would be willing to participate in a programme designed to help them become more physically active if one were available to them. Roughly 37% indicated a

292 Physiotherapy Canada, Volume 70, Number 3 Table 2 Participants’ Ability to Travel to Attend a Physical Activity were improved self-management of health (for, e.g., dia- Programme (n ¼ 60) betes), better sleep, improved appetite, improved per- formance of activities of daily living, improved mental https://utpjournals.press${contentReq.requestUri} - Horizon College Physiotherapy <[email protected]> - Monday, February 22, 2021 10:16:14 PM - IP Address:43.246.243.82 Ability % of participants health, and improved resilience. Figure 1 summarizes the key themes that emerged. I am not able to travel 8.3 I am able to travel a20 min 36.7 Drawbacks I am able to travel 21–30 min 38.3 Fifty-one participants provided open-text responses I am able to travel 31–40 min 10.0 I am able to travel >40 min 6.7 to this item. Twenty-seven percent of respondents per- ceived no drawback to the PA as defined. Perceived willingness and ability to travel up to 20 minutes to drawbacks included pain (20%), fatigue (14%), sacrificing attend a PA programme; another 38% were willing to time (9%), increased falls risk (2%), and increased risk travel up to 30 minutes, 10% up to 40 minutes, and 7% of cardiovascular events (4%). Roughly 12% of the re- more than 40 minutes (see Table 2). Approximately 8% spondents identified items that were barriers (e.g., lack of the respondents were not able to travel at all to attend of motivation) rather than drawbacks (e.g., exercise- a programme. induced pain or injury), suggesting that some respondents may not have understood this question clearly. It is also Of the 13 educational topics, those with the highest interesting to note that although a larger proportion of proportion of respondent interest were ‘‘balancing PA respondents perceived no risk or drawback to PA at the and fatigue’’ (67%), ‘‘build a plan to be more physically level defined in the survey, active’’ (57%), ‘‘keeping motivated for PA’’ (57%), ‘‘nutri- tion and PA’’ (56%), ‘‘where do I start? Learn to measure Facilitators what you are doing already and how to progress’’ (49%), Forty-eight participants provided open-text responses and ‘‘how to find community resources to support you in being physically active’’ (46%). Approximately 10% of to this item. The most common perceived facilitators respondents reported that none of these topics was of of performing the PA behaviour were ‘‘a learned soul to interest. Respondents identified additional topics under guide me’’ (8%), programming available close to home ‘‘other’’: how to get results when your body will not give or at home (8%), well-managed fatigue (8%), having a you energy to go forward and exercise and arthritis. plan (8%), and having a supportive partner or group (7%). A full 11% of the respondents reported that there Goals for physical activity participation were no facilitators of PA behaviour. We drew the code This item drew open-text responses from 47 partici- ‘‘a learned soul to guide me’’ from the response of one participant because it eloquently captured the complex pants. The most commonly identified goals for participa- facilitator identified by many participants. We defined tion in PA programming were improving muscle strength the ‘‘learned soul to guide me’’ as an individual who (13%), increasing cardiorespiratory endurance or function was knowledgeable about exercise, knew the participant (10%), losing weight (9%), increasing energy–decreasing as a person and the person’s health status, and could fatigue (9%), and specific functional goals related to walk- help them navigate the nuances of a complex and epi- ing (9%). However, there was diversity in the personal sodic health condition. goals identified by the survey respondents: We identified 21 individual thematic goals. Barriers Fifty-two participants provided open-text responses Finally, 59 participants responded to the item regard- ing the inclusion of a partner, spouse, friend, or caregiver to this item. The most commonly perceived barriers to in the KFOC-ALFL programme. Approximately 42% indi- performing the PA behaviour at the defined level were cated that they would like to participate with a partner, fatigue (14%), other priorities or distractions (11%), travel 48% indicated that they would like to go on their own, distance to the programme (7%), episodic changes in and the remaining 10% were unsure. health status or acute illness (5%), lack of motivation (5%), and the presence of musculoskeletal injuries (5%). Physical activity participation: benefits, drawbacks, facilitators, Eleven percent of the respondents reported that they and barriers perceived no barriers to performing the PA behaviour. Benefits DISCUSSION Fifty-four participants provided open-text responses This cross-sectional survey reveals important gaps in to this item. The five most commonly identified perceived PA promotion and programming for individuals living benefits of PA were increased strength (14%), manage- with CKD and highlights the diversity of their needs for ment of fatigue (12%), improved cardiovascular health PA programming. These gaps are the limited PA promo- (11%), weight loss/management (11%), and improved tion and services available through renal programmes, overall sense of well-being (10%). There was significant the absence of routine strength training by participants heterogeneity in the responses. Other potential benefits

Parsons et al. ‘‘A Learned Soul to Guide Me’’: The Voices of Those Living with Kidney Disease Inform Physical Activity Programming 293 https://utpjournals.press${contentReq.requestUri} - Horizon College Physiotherapy <[email protected]> - Monday, February 22, 2021 10:16:14 PM - IP Address:43.246.243.82 Figure 1 Key themes identified by the participants in relation to 20 minutes of moderate-intensity physical activity: perceived benefits, drawbacks, facilitators, and barriers. PA ¼ physical activity. despite achieving recommended levels of aerobic activity, Although this was expected, these results emphasize the and limited access to or knowledge of existing PA pro- need for a programme that is flexible enough to align grammes in local communities (delivered through either patients’ goals with the intervention to achieve results formal rehabilitation or community wellness programmes). that will encourage and motivate them in the long term. This patient-reported lack of PA and services from renal Certainly, no single recipe for exercise prescription can programmes is consistent with the literature on the avail- adequately address this diversity. ability of programmes and exercise counselling activities of renal teams from Canada,16 the United States,22 and The respondents identified several benefits, includ- the United Kingdom.23 It is interesting to note that some ing improved strength, lower fatigue, and better cardio- respondents are receiving their information from else- vascular health, associated with an initial level of PA, where—that is, from other community and rehabilita- whereas the drawbacks related primarily to pain, fatigue, tion programmes; this speaks, in part, to the complexity and lost time. Facilitators included a ‘‘learned soul to of living with the medical condition that is CKD. In guide me,’’ a programme that was either close to or at other words, because of coexisting impairments in their home, having a plan, and having a supportive partner or cardiorespiratory, neurological, or musculoskeletal sys- group. Symptoms related to respondents’ health status tems, these patients may have been referred to other (arthritis, shortness of breath, pain, fatigue) were the programmes and services for information and support most commonly identified barriers. Rehabilitation inter- (e.g., cardiac rehabilitation, outpatient physiotherapy). ventions, including but not limited to therapeutic exer- cise prescription, may help address some of these On the basis of the educational topics of interest that issues.24–31 Other barriers included the episodic nature were identified through the survey, there is a need for of respondents’ health, travel distance, lack of motiva- health care teams to offer better management strategies tion, and time. of the symptoms of people living with CKD (especially fatigue), comorbid conditions (e.g., arthritis), and infor- Other authors have investigated the barriers to and mation on PA planning and initiation. Respondents facilitators of PA in CKD in populations outside Canada. identified a wide diversity of goals and PA interests. Delgado and Johansen8 identified fatigue, lack of motiva- tion, and shortness of breath as common patient-reported

294 Physiotherapy Canada, Volume 70, Number 3 https://utpjournals.press${contentReq.requestUri} - Horizon College Physiotherapy <[email protected]> - Monday, February 22, 2021 10:16:14 PM - IP Address:43.246.243.82 barriers to PA; however, only lack of motivation and status, and who could help the person navigate the shortness of breath were associated with the measured nuances of a complex and episodic health condition. PA. Fatigue and lack of motivation were also commonly Given the diversity of educational needs and goals identi- reported by the sample of respondents in the current fied by the respondents, PA programmes are also recom- study; this is interesting because respondents were asked mended to use a model of inter-professional practice to reflect on the barriers to a relatively lower amount and education—including nursing, physiotherapy, occu- of weekly exercise. Zelle and colleagues32 identified low pational therapy, kinesiology, pharmacology, social work, physical self-efficacy and fear of movement as barriers psychology, and medicine—that collaborates with or is to PA among persons after kidney transplantation. Among part of the renal care team. Finally, we advise that pro- patients undergoing routine hemodialysis, previously re- grammes enable patients to pursue their preferred PA ported barriers to leisure time PA have included lower either close to home or at home, be flexible enough to levels of PA as an adult before the start of the treatment, include a family member or partner through partner- having diabetes or hypertension as the cause of kidney ships with existing community wellness resources, and failure, and the presence of cardiovascular disease.33 develop other solutions with these goals in mind. Our findings are consistent with these in that our re- spondents identified unmanaged comorbid conditions as CONCLUSION potential barriers, but they expanded the list of barriers to The results of this needs assessment survey demon- include pain and other musculoskeletal conditions. strate that, even at the lowest level of recommended PA Finally, a qualitative study from the United Kingdom in the current guidelines for CKD, the respondents com- reported that motivators for exercise included family sup- monly identify physical symptoms (including fatigue and port, goal setting, and the accessibility of local facilities; pain) as a barrier to participation. When designing a barriers to exercise included ‘‘poor health, fear of injury physical literacy programme, these key elements should or aggravating their condition, a lack of guidance from be considered: It should include access to a knowledge- healthcare professionals and a lack of facilities.’’34(p.1885) able facilitator, incorporate strength training, be indi- Although respondents in the current study echoed some vidualized to a patient’s health status and goals, and be of these elements, only a minority of respondents identi- provided close to home. Further work should confirm fied fear of injury. Respondents identified fatigue and these findings in groups underrepresented in the current travel distance as more common barriers. study sample. One limitation of this small and voluntary survey was KEY MESSAGES that its results were subject to selection bias; thus, they may not reflect the overall population with CKD in What is already known about this topic Canada because non–English speakers, certain ethnic Physical inactivity is prevalent among persons living groups, and those who are not literate were absent or under-represented. Nonetheless, our results provide some with chronic kidney disease (CKD), and it contributes to direction for the design, implementation, and evaluation their lower health status and quality of life. Adhering to of pilot PA programmes for CKD; these can be modified lifestyle interventions is also low. for subpopulations as future evaluations deem necessary. What this study adds There is an ongoing need to provide evidence-based A description of the scope of need for physical activity resources to support the maintenance of a physically active lifestyle among persons living with CKD in Ontario. (PA) programmes for persons living with CKD in Ontario The diversity of identified needs requires an integrated was completed. Information from this survey about and flexible strategy, founded on the participants’ goals patients’ preferences, attitudes, perceptions, and summary and preferences, that takes into account the episodic recommendations will help to inform the design, delivery, nature of acute illness and fluctuating health status as and evaluation of PA programmes for persons living with well as the social factors that disproportionately affect CKD. Incorporating patients’ perspectives and preferences this population. 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Clinician’s Commentary on Parsons et al.1 https://utpjournals.press${contentReq.requestUri} - Horizon College Physiotherapy <[email protected]> - Monday, February 22, 2021 10:16:14 PM - IP Address:43.246.243.82 What are the barriers to and facilitators of physical activity alone, but better care is likely to be provided by an inter- (PA) for adults living with chronic kidney disease (CKD) in professional team. Ontario? To answer this question, Parsons and colleagues1 asked persons with CKD across the province to complete a survey One member of a comprehensive inter-professional team investigating their current PA behaviours, determinants of PA, supporting PA programming among persons with CKD is the and PA programme delivery preferences. The authors’ results dietician. Adequate protein intake is essential to meeting the provide Ontarian support for the existing literature detailing the most commonly reported PA goals in this study: improving complex factors influencing PA participation in this population. muscle strength and cardiorespiratory endurance. Unfortunately, once dialysis is started, protein intake requirements increase It is no surprise that Parsons and colleagues1 found that the dramatically—information that does not always reach this majority of their respondents were not meeting Canadian PA population.9 This inadequate protein intake can contribute to guidelines given only one in five Canadian adults are currently low levels of skeletal muscle mass and subsequently reduced completing the recommended minimum of 150 minutes of PA levels.10 Registered dieticians can provide nutritional infor- moderate PA per week.2 Although more than 70% of participants mation that takes into account the complexities of renal diets, in this study indicated a willingness to participate in a pro- including recommendations for intake and sources of protein, gramme designed to promote PA, this figure decreased signifi- which will facilitate PA goal completion. cantly as the expected travel time increased. This drop was anticipated given the correlation between CKD severity and Parsons and colleagues’1 findings highlight many of the poor physical performance and frailty,3 which can both prolong challenges facing the Kidney Foundation of Canada and other and complicate travel. organizations that want to improve the rates of participation in PA among adults with CKD. Moving forward, these organiza- Parsons and colleagues1 found that the majority of partici- tions should support a variety of initiatives that employ inter- pants reported that they had received very little or no informa- professional teams who can provide PA education and design tion about PA from their renal team. This finding was expected, and deliver exercise programmes tailored to this population’s although it is especially concerning considering that the majority goals and needs. of their participants were in-centre hemodialysis patients, who, among patients with CKD, often have the greatest access to the Ian R. Barrett, BHSc, MScPT centres’ medical and nursing teams. Despite a consensus that Physiotherapist, St. Michael’s Hospital, Toronto, PA is beneficial for patients with CKD, its encouragement is not often part of their routine medical management.4 and Lakeridge Health, Oshawa, Ontario; [email protected]. Regarding education, of the 13 topics proposed, Parsons and colleagues1 found that their participants were most interested REFERENCES in information on balancing PA and fatigue. Luckily, research already supports PA’s effect of reducing the often-high levels 1. Parsons TL, Bohm C, Poser K. ‘‘A learned soul to guide me’’: The of fatigue experienced by persons with CKD.5 Providing this voices of those living with kidney disease inform physical activity education alone may encourage greater participation in PA, programming. Physiother Can. 2018;70(3):289–95. https://doi.org/ particularly because Parsons and colleagues found that fatigue 10.3138/ptc.2017-01.ep. was the most commonly reported barrier and the second most commonly reported drawback to PA. Furthermore, low self- 2. Statistics Canada. Table 117–0019—distribution of the household efficacy and fear of movement have been found to be especially population meeting/not meeting the Canadian physical activity prevalent among persons with kidney transplantation, and they guidelines, by sex and age group, occasional (percentage) [Internet]. act as barriers to PA.6 It is incumbent on physiotherapists and Ottawa: Statistics Canada; 2017 [cited 2018 Feb 19]. Available from: other health professionals to counter these concerns by better http://www5.statcan.gc.ca/cansim/a26?lang=eng&id=1170019. informing and motivating their patients. Research has already demonstrated the ability of transplant recipients to perform 3. Reese PP, Cappola AR, Shults J, et al.; CRIC Study Investigators. intense exercise as well as their healthy counterparts, which Physical performance and frailty in chronic kidney disease. Am J has even been demonstrated by a climb of Mount Kilimanjaro.7 Nephrol. 2013;38(4):307–15. https://doi.org/10.1159/000355568. Medline:24107579 Parsons and colleagues1 recommend that PA programmes will be best supported by an inter-professional team, and I could not 4. Aucella F, Gesuete A, Battaglia Y. A ‘‘nephrological’’ approach to agree more. The benefits of exercise among persons with CKD physical activity. Kidney Blood Press Res. 2014;39(2–3):189–96. during and off of hemodialysis are numerous. They include im- https://doi.org/10.1159/000355796. Medline:25118037 proved heart rate variability, physical fitness, depression scores, and health-related quality of life.8 However, anyone prescribing 5. Bossola M, Pepe G, Vulpio C. Fatigue in kidney transplant recipients. a safe and appropriate PA plan must consider the whole patient. Clin Transplant. 2016;30(11):1387–93. https://doi.org/10.1111/ Adults with CKD often have several comorbidities and poor ctr.12846. Medline:27622392 physical performance, and they may also have population- specific precautions to consider, including dialysis timing and 6. Zelle DM, Corpeleijn E, Klaassen G, et al. Fear of movement and low access. These barriers can be navigated by a physiotherapist self-efficacy are important barriers in physical activity after renal transplantation. PLoS One. 2016;11(2):e0147609. https://doi.org/ 10.1371/journal.pone.0147609. 7. van Adrichem EJ, Siebelink MJ, Rottier BL, et al. Tolerance of organ transplant recipients to physical activity during a high-altitude 296

Clinician’s Commentary on Parsons et al. 297 https://utpjournals.press${contentReq.requestUri} - Horizon College Physiotherapy <[email protected]> - Monday, February 22, 2021 10:16:14 PM - IP Address:43.246.243.82 expedition: climbing Mount Kilimanjaro. PLoS One. 10. Hirai K, Ookawara S, Morishita Y. Sarcopenia and physical inactivity 2015;10(12):e0145566. https://doi.org/10.1371/journal. in patients with chronic kidney disease. Nephrourol Mon. pone.0145566. Medline:26673221 2016;8(3):e37443. https://doi.org/10.5812/numonthly.37443. 8. Barcellos FC, Santos IS, Umpierre D, et al. Effects of exercise in Medline:27570755 the whole spectrum of chronic kidney disease: a systematic review. Clin Kidney J. 2015;8(6):753–65. https://doi.org/10.1093/ckj/sfv099. DOI:10.3138/ptc.2017-01-cc Medline:26613036 9. Cupisti A, D’Alessandro C, Fumagalli G, et al. Nutrition and physical activity in CKD patients. Kidney Blood Press Res. 2014;39(2-3):107– 13. https://doi.org/10.1159/000355784. Medline:25117648

https://utpjournals.press${contentReq.requestUri} - Horizon College Physiotherapy <[email protected]> - Monday, February 22, 2021 10:16:14 PM - IP Address:43.246.243.82 COCHRANE COLLABORATION What Does Cochrane Say about . . . Non-Pharmacological Treatment of Neuropathic Pain? Eccleston C, Hearn L, Williams ACDC. Psychological therapies The Cochrane Collaboration is an international not-for-profit for the management of chronic neuropathic pain in adults. and independent organization dedicated to making up-to-date, Cochrane Database Syst Rev. 2015;(10):CD011259. https:// accurate information about the effects of health care readily doi.org/10.1002/14651858.CD011259.pub2. Medline:26513427 available worldwide. It produces and disseminates systematic reviews of health care interventions and promotes the search for Gibson W, Wand BM, O’Connell NE. Transcutaneous electrical evidence in the form of clinical trials and other studies of inter- nerve stimulation (TENS) for neuropathic pain in adults. ventions. For more information, visit http://www.cochrane.org. Cochrane Database Syst Rev. 2017;(9):CD011976. https:// doi.org/10.1002/14651858.CD011976.pub2. Medline:28905362 DOI:10.3138/ptc.70.3.cochrane Ju ZY, Wang K, Cui HS, et al. Acupuncture for neuropathic pain in adults. Cochrane Database Syst Rev. 2017;(12):CD012057. https://doi.org/10.1002/14651858.CD012057.pub2. Medline:29197180 298

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