|
 
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| ORIGINAL ARTICLE |
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| Year : 2019 | Volume
: 3
| Issue : 3 | Page : 77-106 |
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Satisfaction with an exercise physiology consultation after treatment for childhood cancer: An opportunity for healthy lifestyle education
David Mizrahi1, Claire E Wakefield2, Lauren Ha3, Richard J Cohn2, David Simar4, Joanna E Fardell2
1 School of Medical Sciences; Prince of Wales Clinical School, UNSW Medicine, UNSW Sydney; Kids Cancer Centre, Behavioural Sciences Unit, Sydney Children's Hospital, Sydney, NSW, Australia
2 Prince of Wales Clinical School, UNSW Medicine, UNSW Sydney; School of Women's and Children's Health, UNSW Medicine, UNSW Sydney, Australia
3 School of Medical Sciences, UNSW Medicine, UNSW Sydney; Prince of Wales Clinical School, UNSW Medicine, UNSW Sydney, Sydney, NSW, Australia
4 School of Medical Sciences, UNSW Medicine, UNSW Sydney, Sydney, NSW, Australia
| Date of Submission | 04-Sep-2019 |
| Date of Acceptance | 24-Oct-2019 |
| Date of Web Publication | 29-Nov-2019 |
Correspondence Address:
Dr. David Mizrahi
Kids Cancer Centre, Behavioural Sciences Unit, Sydney Children's Hospital, Level 1 South Wing, Randwick, Sydney, NSW 2031
Australia
 Source of Support: None, Conflict of Interest: None  | Check |
DOI: 10.4103/hm.hm_47_19
Purpose: Many childhood cancer survivors are not engaging in sufficient physical activity despite high chronic disease incidence. We assessed satisfaction and acceptability of attending an exercise physiology consultation. Methods: An 8–18-year-old cancer survivor >1-year posttherapy were assessed by an exercise physiologist (T0). We assessed parents' and survivors' satisfaction and acceptability with the consultation and information received 1-month later (T1). Parents and survivors were asked whether they would see an exercise physiologist again and whether other survivors should be assessed. Results: We recruited 102 participants, with 70 unique families retained. Parents were more satisfied with information received about exercise from T0to T1 (43.4 ± 33.2 vs. 81.5 ± 17.6/100,P < 0.001). Parents reported high satisfaction from the consultation (94.7 ± 10.2/100). Most parents (96.6%) and survivors (95.9%) recommended other survivors see an exercise physiologist. Some parents (37.0%) wanted their child to be more active, while 47.8% of survivors wanted to be more active. Conclusions: There was support for an exercise physiology consultation from parents and survivors. Guidance from an exercise physiologist may be important to alter lifestyle behaviors, which can be potentially beneficial to cardiovascular and psychological well-being. Keywords: Cardiorespiratory fitness, childhood cancer survivor, exercise physiology, exercise, health education, physical activity
How to cite this article:
Mizrahi D, Wakefield CE, Ha L, Cohn RJ, Simar D, Fardell JE. Satisfaction with an exercise physiology consultation after treatment for childhood cancer: An opportunity for healthy lifestyle education. Heart Mind 2019;3:77-106 |
How to cite this URL:
Mizrahi D, Wakefield CE, Ha L, Cohn RJ, Simar D, Fardell JE. Satisfaction with an exercise physiology consultation after treatment for childhood cancer: An opportunity for healthy lifestyle education. Heart Mind [serial online] 2019 [cited 2023 May 29];3:77-106. Available from: http://www.heartmindjournal.org/text.asp?2019/3/3/77/272079 |
| Introduction | |  |
The survival rate of childhood cancer has increased to >80% in most high-income countries in 2018.[1] Completing treatment is a milestone for families, while transiting into survivorship is a vital time to mitigate health risks.[2],[3] Childhood cancer survivors (CCS) have increased risk of cardiovascular disease, diabetes, depression, and secondary cancers compared with the general population.[2],[3] Healthy lifestyle promotion after cancer is becoming more common, with active young adult cancer survivors fostering psychological growth after their cancer diagnosis.[4]
Physical activity is known to benefit all physiological systems (i.e., cardiovascular, respiratory, neuromuscular, hormonal, metabolic, and psychological), while active CCS has been shown to improve their body composition, cardiorespiratory fitness, muscular strength, and quality of life.[5],[6],[7] Despite good intentions of medical teams and parents to support their recovering child,[8] over two-thirds of CCS are not meeting recommended exercise guidelines.[9] Many CCS have reduced cardiorespiratory fitness compared with the general population, and this deficit increases as CCS reach adulthood, compounding the risk of cardiovascular disease.[10]
Exercise physiologists (EP) are allied-health professionals providing clinical care for cardiac, metabolic, and neuromuscular conditions.[11] EPs are endorsed in oncology by organizations, including the Clinical Oncology Society of Australia and The American College of Sports Medicine, to support cancer survivors during and after treatment.[12],[13] EPs identify exercise barriers and offer strategies to safely overcome them.[11] EP consultations typically incorporate individualized prescriptions and patient-centered goals to ensure the adoption of self-management strategies and long-term behavior change.[11] EPs provide education about the potential physical and psychological benefits of exercise (e.g., progressively increasing exercise levels to match survivors' fatigue levels, which is a barrier reported by CCS.[12],[14] Exercise can supervised in the clinic (recommended for patients with higher needs) or monitored remotely using technology to engage CCS (e.g., fitness trackers, smartphone applications), which is important when families are not located close to specialized hospitals.[15],[16] This may assist in mitigating their risk of developing physical and psychological comorbidities.
There is emerging support for using exercise among CCS.[17] However, no studies have investigated the acceptability of an EP consultation among parents and survivors of childhood cancer. The primary aim was to determine the satisfaction and acceptability of a single EP consultation and individualized exercise prescription received from survivors' and parents' perspectives. The secondary aim was to determine whether a single EP consultation could increase survivors' exercise levels.
| Methods | | |
Participants
We investigated cardiorespiratory fitness and body composition after childhood cancer treatment, inviting CCS to participate in an evaluation of an EP consultation. We recruited participants between September 2017 and September 2018. Inclusion criteria included children aged 8–18 years old, had completed treatment >1-year previously for any malignancy, could communicate in English, and whose parent/guardian was willing to provide informed consent. Exclusion criteria included medical contraindication to exercise testing (e.g., unstable angina, uncontrolled heart failure, and severe mental impairment) indicated by the treating consultant or pregnancy. We contacted parents to invite both them and survivors. Although both were invited, parents could participate without the survivor, and vice versa. Parents received a reminder e-mail on up to two occasions, with a reminder telephone call 1-month after the final e-mail. The questionnaire could be completed online, or a paper-based version sent by mail with a reply-paid envelope. The study was approved by (hospital name blinded) the Human Research Ethics Committee (approval number blinded).
Procedures
The parent and survivor completed questionnaires before the EP consultation (T0), and 1 month later (T1) [Appendix]. The T1 questionnaire assessed the acceptability of an EP consultation and the individualized exercise prescription. Participants completed validated questionnaires relating to exercise levels. We used the Intensity of Treatment Rating Scale to classify participants into low (Level 1/2) or high (Level 3/4) intensity.[18]
Exercise physiologist consultation
As part of the consultation after the T0 questionnaires, an EP assessed cardiorespiratory fitness[19] and 6-min walk test,[20] and body composition (In Body 570 bioelectrical impedance).[21] The EP consultation was designed based on a traditional EP assessment.[11] The EP discussed exercise levels, common barriers and how to overcome them (e.g., fatigue, lack of time, and equipment),[14] identifying individual preferences and needs using the Transtheoretical Model determining exercise Stage of Change.[22] We set short- and long-term goals using the SMART principle (e.g., improve maximum push-ups from 10 to 20 in 6 weeks, or increase cardiorespiratory fitness to run one kilometer without stopping in 8 weeks).[23] We provided education on exercise guidelines with suggestions to safely increase levels at different stages during childhood development, providing reassurance for those meeting guidelines (60 min/day of moderate-vigorous exercise).[24] Parents and survivors' medical teams were provided with a 3-page report of survivors' performance and exercise behaviors, goals, and individualized exercise prescription. These suggestions underpinned by a framework to build exercise levels toward recommended guidelines including a combination of individual- and group-based (i.e., family and friends) activities. Exercise prescriptions included a combination of aerobic (e.g., fast walking, running, skipping, swimming, cycling), stretching (e.g., upper body, lower body, static, and dynamic for 15–30 s) and muscle-strengthening exercises (e.g., push-ups, planks, squats, lunges, bicep curls, and triceps dips).
Measures
Satisfaction and understanding
At T1, parents completed the Youth Satisfaction Questionnaire (YSQ) to assess satisfaction with the EP consultation, including 5-item on a 3-point Likert scale (“yes,” “somewhat,” “no”)[25] (e.g., did you get the help you wanted? did you like the help you received from the consultation regarding exercise after cancer?). We asked parents how satisfied they were to receive an EP consultation, and how well they felt they understood the individualized exercise prescription provided to them, both on a 0–100 point scale. We asked parents at T0 and T1 on a 0–100 point scale: “how satisfied are you with the information received about your child exercising after cancer treatment” and “how well do you understand the importance of your child exercising after cancer treatment?.”
Acceptability
We used both qualitative and quantitative, validated and purpose-designed questions to determine the acceptability of an EP consultation (T1). Questions asked whether participants had received “too much,” “too little,” or “just right” information, and whether they would like to see an EP again, and if so, how they would like to be seen in the future (e.g., more face-to-face sessions, online consultations, tracked remotely using activity monitors). We asked parents using a 5-point Likert scale whether they found the study beneficial/burdensome. We used open-text questions asking parents how to improve the study and how exercise advice should be provided throughout routine care (i.e., before participating in the consultation). We asked survivors whether they enjoyed the consultation, the cardiorespiratory fitness assessments, if they would like to see an EP at future clinics (e.g., annually) and whether they recommend other survivors to receive an EP consultation, using open-text responses.
Demand for exercise physiology consultations
We asked parents at T1 on a 5-point Likert scale whether the EP consultation increased their own exercise levels, the survivors and their other children. We asked parents how they felt about the amount of exercise their child was doing (“too much,” “too little,” “just right,”) and whether they would like them to do more (“not at all,” “somewhat,” “probably,” “definitely”). We asked parents and survivors to complete the Godin's Leisure Score Index (LSI), a 4-item self-report questionnaire on exercise levels[26] at T0 and T1. Three questions stratified exercise intensity (low, moderate, vigorous), tallying for a global LSI score. The LSI items were amended to include minutes, to calculate min/week for each intensity. The final item calculates the frequency of weekly leisure-time activities.
Statistical analyses
We compared characteristics at T0 of participants who completed T1 with those who did not, using independent samples t-tests. We used paired sample t-tests to compare quantitative parental satisfaction with receiving exercise information, knowledge about exercise, perceived importance of exercise after cancer, and exercise before and after the EP consultation (T0 and T1). We used descriptive statistics to determine whether families would be interested in receiving an EP consultation in follow-up care. We used content analysis to qualitatively extract themes from open-field questions to identify how satisfied and acceptable parents and survivors found participation in the EP consultation, and the individualized exercise prescription they received [Supplementary Table 1][Additional file 1].[27] Cardiorespiratory fitness was determined using the 6 min walking test distance in all participants, with VO2 max determined using a Cardiopulmonary Exercise Test in a sub-set. Cardiorespiratory fitness scores were converted to percentiles for the 6 min walking test[28] and VO2 max (child),[29] adolescent.[30] We performed statistical analyses using the SPSS Version 25.0 statistical software (Armonk, NY, USA: IBM Corp.,).
| Results | | |
Demographics
One hundred and sixteen eligible participants were invited with 14 survivors not recruited (eight were interested but had scheduling conflicts and six declined). One hundred and two participants consented and completed the EP consultation in T0 [Figure 1] (recruitment rate = 88%). Of these, 70 families were retained, completing T1 (retention rate = 69%). This included 64 parents (aged 45.7 ± 5.9 years, 79% mothers) [Table 1] and 50 survivors (aged 12.9 ± 3.4 years, 65% males). The most prevalent cancer was acute lymphoblastic leukemia (40%), lymphomas (17%), and Wilms' tumor (9%), while most survivors received chemotherapy (97%). Participants walked 667 ± 81.5 m in the 6 min walk test (63% ± 30%), while using a Cardiopulmonary Exercise Test, VO2 max was 42.9 ± 8.3 ml/kg/min (45% ± 30%). Most parents (81%) and survivors (92%) wanted to increase their (or their child's) exercise levels, while parents (97%) and survivors (96%) think other survivors should be assessed by an EP [Table 2]. | Table 1: Sociodemographic and clinical characteristics of 64 parents and 50 survivors who completed satisfaction and acceptability questionnaires at T1
Click here to view |
 | Table 2: Physical activity, anthropometric, and fitness characteristics of survivors and their parents
Click here to view |
There were no differences between participants who completed T1 or not in age (P = 0.77), sex (P = 0.42), time since treatment (P = 0.82), rurality (P = 0.92), body composition (P = 0.13), cardiorespiratory fitness (P = 0.11), or parental education (P = 0.56). Parents and survivors who completed T1 engaged in more exercise at T0 compared with those not completing T1 (parents: 216 ± 214 vs. 139 ± 159 min/week, t = −2.02, P = 0.047, survivors: 328 ± 267 vs. 202 ± 153 min/week, t = −2.85, P = 0.005).
Satisfaction and understanding
Parents reported high satisfaction regarding their decision to participate in the EP consultation (94.7 ± 10.2 out of 100). Using the YSQ, 83% of parents “liked the help they received,” 68% “received the help they wanted,” 66% did not need “more help than they received,” and 86% were not “given more services than they needed.” Parents reported the EP consultation “helped” (36%) or “somewhat helped” (46%) with their life satisfaction [Figure 2]a. | Figure 2: (a) Satisfaction with an exercise physiology consultation (Youth Satisfaction Questionnaire). (b) Parents satisfaction with information about physical activity advice (• and understanding of importance of physical activity ‧) before (T0) and after (T1) the exercise physiology consultation (means and 95% confidence intervals). Higher scores correspond to higher understanding/satisfaction. (c) Proportion of parents and survivors with a desire to change physical activity levels. (d) Change in physical activity levels of parents, survivors and siblings
Click here to view |
Parents were more satisfied with information received about exercise after completing an EP consultation (T1) compared with their usual care (T0; i.e., before the consultation; [Figure 2]b; mean = 43.4, 95% confidence interval [CI] 33.7–53.0 vs. mean = 81.5, 95% CI 76.0–86.3 out of 100, P < 0.001). Most parents (93%) were satisfied with the information received during the consultation and the 3-page summary report of physical results, SMART goals, and individualized suggestions received, with 5% wanting more information.
Although parents had high self-reported understanding of the importance of exercise after cancer (T0), their perceived understanding increased at T1(mean = 73.0, 95% CI 70.3–80.7 vs. mean = 89.0, 95% CI 87.1–93.4 out of 100, P < 0.001). Parents reported they understood their child's individualized EP report to a high level (89.2 ± 16.1 out of 100):“The report gave us a better understanding of what exercises are good to be healthy for our child's needs and goals, particularly as we were not aware where she was lacking” (mother of 8-year-old female neuroblastoma survivor).
Acceptability
Most parents (86%) found the study at least somewhat beneficial, while 89.8% did not find participation burdensome. Nearly all parents (96.6%) and survivors (95.9%) reported the consultation to be acceptable and that they would recommend other CCS be assessed by an EP. One mother of a 16-year-old male acute lymphoblastic leukemia survivor stated: “He played lots of sport before diagnosis, so not being able to play was awful for him. If he had an exercise physiologist to guide him, it may have improved that part of his life. This was exactly what we would've loved to have access to” [Supplementary Table 1].
Most survivors (91%) enjoyed receiving the consultation, supported by a 17-year-old female Hodgkin's lymphoma survivor: “It allowed me to see how fit I was and discuss what areas I can improve my fitness.”Twenty-three percent of survivors did not enjoy the maximal treadmill assessment (main reasons: mask discomfort and the electrocardiograph cables) emphasized by the fact “it was very uncomfortable to run in all the cables and the mask” (15-year-old male hepatoblastoma survivor).
Most survivors (94%) said they would be eager to receive annual EP assessments as part of their standard follow-up, suggesting consultations were well supported by survivors. Most parents (61.1%) indicated a desire for repeat visits (11.3% did not feel they needed a repeat assessment and 27.4% were unsure).
Of parents interested in repeat consultations, most indicated that they would like more face-to-face consultations (61%), with some indicating they would like to be motivated from distance using technology including fitness trackers and mobile applications (37%) and online/Skype™ consultations (15%), with limited support for telephone consultations (6%). Parents stated that keeping an ongoing dialogue between health professionals and survivors would assist survivors following a prescribed routine: “When a child is encouraged to follow a fitness routine, it will help them not just now, but in the future. As adults, if you follow a healthy lifestyle it helps you avoid health issues” (mother of 10-year-old male acute lymphoblastic leukemia survivor).
Demand for exercise physiology consultations
Most parents (80%) and survivors (91%) wanted to increase their exercise levels (31% of parents and 44% of survivors definitely wanted to increase survivors' exercise levels, 12% of parents, and 28% of survivors probably wanted to increase survivors' exercise levels). Most parents (70%) and survivors (76%) who probably/definitely wanted to increase their exercise levels were not currently meeting the exercise guidelines.
Some parents (21%) and survivors (9%) reported they did “not at all” want their child/themselves to increase exercise levels after the EP consultation [Figure 2]c. This response tended to come from already active survivors (survivors whose parents reported they did “not at all” want to increase exercise reported 388 ± 363 vs. 318 ± 250 min/week in survivors whose parents reporting wanting their child to at least “somewhat” increase exercise). This is supported by a father of an 8-year-old male Wilms' tumor survivor stating: “He doesn't need extra help as he is already super active, but is important to keep pushing the message as he gets older.”
Some parents (37%) believed their child should be doing more exercise, while 47.8% of survivors reported wanting to be engaging in more exercise. Most parents (68%) reported that an EP was the best person to discuss exercise with, followed by their doctor (32%), as parents suggested the importance of “regular monitoring of body fat and tips on exercise by an exercise physiologist” (mother of 14-year-old male hepatoblastoma survivor).
Exercise levels
Participation in a single EP consultation did not contribute to changes in self-reported mean weekly minutes of moderate-vigorous exercise in parents and survivors (parents: 228.4 ± 223.3 vs. 248.0 ± 200.4 min/week, P = 0.56; survivors: 325.9 ± 265.4 vs. 382.2 ± 326.5 min/week, P = 0.10). Despite the nonsignificant mean change in exercise duration, general exercise was still perceived to have increased by at least “a little bit” among 66% of parents, 71% of survivors, and 53% of siblings [Figure 2]d. This increase was perceived to be beneficial for some as: “The exercise guide provided was great to have because it's the program he now follows at the gym” (mother of 18-year-old male acute lymphoblastic leukemia survivor).
| Discussion | | |
This is the first study to assess the satisfaction and acceptability of a single EP consultation for parents and survivors of childhood cancer. EP is not standard-of-care within pediatric oncology yet has the potential to help survivors improve their health behaviors. Most survivors wanted to increase their exercise levels in our study, as did most of their parents. Parents and survivors found participating in a single EP consultation and receiving individualized exercise prescription to be satisfactory and acceptable. Parents and survivors were willing to have repeat consultations and encourage other survivors to be assessed. Although a single EP consultation was not sufficient to significantly increase physical activity levels, it was enough to increase parents' satisfaction with receiving exercise information after cancer, as well as improving their perceived understanding about the importance of being physically active. Our results highlight the demand from parents and survivors to receive EP services in routine survivorship care.
Most parents and survivors desired to increase their exercise levels, which is vital considering under one-third achieve recommended exercise levels.[9] This is not unexpected given increasing focus on health-protective behaviors after a cancer diagnosis and in survivorship (e.g., exercise, sun safety, proper diet, not smoking, regular check-ups).[31] Most parents in our study preferred discussing their child's exercise with an EP as opposed to an oncologist, or nurse, as it is not anticipated these professionals would be equipped to provide individualized exercise assessments and programs. EPs and physiotherapists have an increasingly important role in the oncology setting.[32] Despite the demand for repeat consultations, many parents in our cohort (38%) were interested in engaging away from the hospital using technology including mobile phone applications or fitness trackers. This is important considering increased institutional costs of face-to-face interventions and logistics of attending appointments, particularly for rural families.[16],[33] Our findings are supported by a study of 14–18-year-old CCS who found wearing fitness trackers and using Facebook was acceptable and increased their motivation to exercise.[34] Given the increasing use of technology to engage young people,[15] medical staff and researchers may consider offering this interaction mode to complement traditional consultations.
The most common theme that parents highlighted wanted repeat consultations in the future, which would provide opportunity to deliver individualized guidance and monitor the impact on survivors' exercise and fitness over time. Despite most families wanting to commence EP assessments after completing treatment, many indicated they would have liked to commence during treatment if it was available. Exercise interventions have been shown to be acceptable and safe during the intensive treatment phase,[35] which may be helpful to minimize the physical activity decline generally experienced. There is emerging evidence for the efficacy of exercise to improve cardiorespiratory fitness and body composition during childhood cancer treatment,[36] while being more active is also likely to have numerous neuromuscular, pulmonary, psychological, and metabolic benefits. Families in our study appreciated the reassurance the consultation gave them, reported they liked receiving information tailored to their child's needs and preferences, which would assist overcoming barriers and safety concerns about exercise reported from another study.[37] This is important as individualized exercise programs were shown to increase motivation and adherence.[38] Finally, many survivors found the cardiorespiratory fitness assessments a good physical challenge, and the consultation motivated them to be more active after receiving their results.
Study limitations
This was the first study to investigate the satisfaction and acceptability of an EP consultation among CCS and their parents. This is important given the increasing evidence supporting exercise in oncology.[36],[39] However, the study is limited by including CCS with a broad range of cancer diagnoses. Although the retention rate was relatively high, survivors and parents completing T1 had higher exercise levels compared with those who were not retained. This suggests either family with lower exercise levels were not as engaged, which is important considering they would likely have an increased need to be physically active compared with already active survivors, or these families were less likely to complete follow-up if they had a negative experience, potentially inducing response bias. Self-report and parent-proxy data creates potential desirability bias (i.e., over-reporting or providing favorable responses to the researchers). We used a combination of quantitative and qualitative data; however, our purpose-designed questionnaires have yet to be validated with the lack of available gold-standard measures to compare with in this population. Our sample was under-represented by survivors of brain tumors, low income and rural families, and fathers, which is common in clinical research.[40]
Clinical implications
Although not standard-of-care in most pediatric hospitals, this study opens the discussion for survivorship clinics to consider the role of exercise professionals in assisting both physical and psychological health of patients within the hospital or referred externally during and after treatment. Future research is warranted to investigate how EP consultations could be structured to sustainably promote physical activity long-term. Pathway models for referrals, screening, clearance, and exercise programming to support survivors have recently been suggested by expert panels.[41] In addition, research should investigate whether repeated consultations with an EP can sustain physical activity levels in survivorship care, supplemented with incorporating technology to motivate families away from the clinic.
| Conclusions | | |
A single EP consultation was satisfactory and acceptable among CCS and their parents. A single assessment was enough to increase satisfaction and understanding of exercise information, but not physical activity levels. Many parents would like to commence this support at an early stage, even during the intensive treatment phase, to assist their child to develop healthy behaviors and potentially reduce their risk of developing chronic health conditions as they age.
Acknowledgments
The authors would like to thank the participants for providing their time for this study, as well as Karen Johnston for assisting with recruitment and UNSW Stats Central for assisting with the data analysis.
Financial support and sponsorship
The Behavioural Sciences Unit at Sydney Children's Hospital is supported by the Kids with Cancer Foundation. David Mizrahi is supported by an Australian Government Research Training Program Scholarship. Joanna Fardell is supported by the Kids' Cancer Project. Claire Wakefield is supported by a Career Development Fellowship from the NHMRC of Australia (APP1143767).
Conflicts of interest
There are no conflicts of interest.
| Appendix | | |
1. Child baseline questionnaire
PARTICIPANT ID:__________________________________ INITIALS: ___________ INLINE:____________
Please answer all the questions. Mark only one answer per question, and more important: be honest.
Try to think about your level of fitness (compared to your friends) and choose the right option
1. My general physical fitness is:
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
2. My running fitness (e.g you are able to run for a long time) is:
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
3. My muscle strength is (e.g. how strong you are):
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
4. My running speed is (e.g. how fast you can run):
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
5. My flexibility is:
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
6. How do you feel about the amount of exercise you are doing now?
I should be doing:
◻Less exercise ◻I am doing the right amount ◻More exercise
7. Would you like to do more exercise?
◻Not at all ◻Somewhat ◻Probably ◻Definitely
Write on each line the appropriate number:
9a) In a normal week, how many days do you exercise for 60 minutes or more?
◻0 ◻1 ◻2 ◻3 ◻4 ◻5 ◻6 ◻7
If you answered 5-7 days, go to Question 9c
9b) Please answer only if you answered 0-4 days/week above:
Do you think you will start doing 60 minutes of exercise 5 or more days a week, in the next 6 months?
◻No, and I don't plan to in the next 6 months
◻Yes, I do plan to in the next 6 months
◻Yes, I do plan to in the next 30 days
9c) Please answer only if you answered 5-7 days/week above:
How many months have you been doing 60 minutes of exercise on 5 or more days a week?
◻Less than 6 months
◻6 months or more
10. Do you ever have problems exercising because of the following? (tick all that apply)
◻Too tired ◻Not enough time ◻Don't belong to a gym
◻Rather watch TV/read ◻No one to exercise with ◻Bad weather
◻Feel self conscious ◻Do not enjoy it ◻Friends don't exercise
◻No will power ◻No access to equipment ◻Worry about getting injured
◻Don't like to sweat ◻No support ◻Do not want to be sore
◻Unsure what to do ◻No place to exercise ◻Pain
◻Poor balance
◻Treatment late-effects (please list):___________________________________________________________
_______________________________________________________________________________________________________
◻Other reason: _______________________________________________________________________________
_______________________________________________________________________________________________________
11. How do you feel about the following reasons to do exercise (place an ‘X’ for each item)?
12. During a typical seven day period (a week), how often do you do any regular activity long enough to work up a sweat (heart beats rapidly)?
◻Often ◻Sometimes ◻Never/Rarely
13. When do you think would be the best time to start exercising? (select one)
◻During treatment ◻At the end of treatment ◻After completing treatment
◻During follow-up visits ◻Not required
◻Other:_______________________________________________________________________________________________________
14. How important is it to you that you can do exercise or play sport? (Place an X)
15. During a normal week, how often has a member of your family: (e.g. your father, mother, brother, sister, grandparent, or other relatives):
16. During a normal week, how often:
17. How many of your 5 closest friends are physically active on a regular basis?
◻0 ◻1 ◻2 ◻3 ◻4 ◻5
18. SCREEN TIME: Outside of school, but on a school day, how many hours do you spend:
a) On a computer or gaming console (e.g. Playstation, Xbox)
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
b) On an iPad, tablet, or mobile phone?
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
c) Watching TV?
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
19. SCREEN TIME: On a weekend day, how many hours do you spend:
a) On a computer or gaming console (e.g. Playstation, Xbox)
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
b) On an iPad, tablet or mobile phone?
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
c) Watching TV?
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
20. Would you have any interest in using a learning mobile phone or tablet application (‘app’) to improve your physical activity levels and lifestyle?
◻Yes
◻No
◻Don't know
21. If you were interested in using a learning mobile phone/tablet app, how many hours a week would you be want to spend on it?
◻0 ◻1 ◻2 ◻3 ◻4+
22. Would you be interested in using technology to track your activity levels (e.g. FitBit, pedometer), and receive feedback through the app to help guide you?
◻Yes
◻No
◻Don't know
Under each heading, please tick the ONE box that best describes your health TODAY.
23. Do you have any problems regarding your mobility, that is walking around?
◻No problems ◻Slight problems ◻Moderate problems
◻Severe problems ◻I am unable to
24. Do you have any problems with self care, that is washing or dressing yourself?
◻No problems ◻Slight problems ◻Moderate problems
◻Severe problems ◻I am unable to
25. Do you have any problems doing your usual activities (e.g. work, study, housework, family or leisure activities)?
◻No problems ◻Slight problems ◻Moderate problems
◻Severe problems ◻I am unable to
26. Do you experience pain or discomfort?
◻No pain ◻Slight pain ◻Moderate pain
◻Severe pain ◻Extreme pain
27. Do you ever feel worried, sad or unhappy?
◻Not worried, sad or unhappy ◻Slightly worried, sad or unhappy ◻Moderately worried, sad or unhappy
◻Severely worried, sad or unhappy ◻Extremely worried, sad or unhappy
28. We would like to know how good or bad your health is TODAY. Please mark an X on the scale.
29. Now, please write the number you marked on the scale in the box below.
2. Child follow-up questionnaire
PARTICIPANT ID:__________________________________INITIALS:__________________________________DATE:__________________________________
1. Did you enjoy being a part of the study?
◻Yes, because:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
◻No, because:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
◻Unsure
2. Did you enjoy doing the running test on the treadmill?
◻Yes, because:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
◻No, because:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
◻Unsure
3. Would you encourage other children to be a part of the PICASSO study?
◻Yes, why:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
◻No, why:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
◻Unsure, why:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
4. Would you be happy to do an exercise test at your next follow-up visits to the hospital (e.g. once a year)?
◻Yes
◻No
◻Unsure
Please answer all the questions and do not leave any blank. Mark only one answer per question. Thank you for your cooperation.
Think about your level of physical fitness (compared to your friends) and choose the right option
1. My general physical fitness is:
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
2. My running fitness (e.g you are able to run for a long time) is:
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
3. My muscle strength is (e.g. how strong you are):
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
4. My running speed is (e.g. how fast you can run):
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
5. My flexibility is:
◻Very poor ◻Poor ◻Average ◻Good ◻Very good
6. How do you feel about the amount of exercise you are doing now?
I should be doing:
◻Less exercise ◻I am doing the right amount ◻More exercise
8. During a typical seven day period (a week), how many times on average do you do the following kinds of exercise for more than 15 minutes?
Write on each line the appropriate number:
9. During a typical seven day period (a week), how often do you engage in any regular activity long enough to work up a sweat (heart beats rapidly)?
◻Often ◻Sometimse ◻Never/Rarely
10. SCREEN TIME: Outside of school, but on a school day, how many hours do you spend:
a) On a computer or gaming console (e.g. Playstation, Xbox)
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
b) On an iPad, tablet, or mobile phone?
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
c) Watching TV?
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
11. SCREEN TIME: On a weekend day, how many hours do you spend:
a) On a computer or gaming console (e.g. Playstation, Xbox)
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
b) On an iPad, tablet or mobile phone?
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
c) Watching TV?
◻Not spending any time ◻Under 1 hour ◻1 to <2 hours ◻2 to <3 hours
◻3 to <4 hours ◻4 to <5 hours ◻Over 5 hours
Under each heading, please tick the ONE box that best describes your health TODAY.
1. Do you have any problems regarding your mobility, that is walking around?
◻No problems ◻Slight problems ◻Moderate problems
◻Severe problems ◻I am unable to
2. Do you have any problems with self care, that is washing or dressing yourself?
◻No problems ◻Slight problems ◻Moderate problems
◻Severe problems ◻I am unable to
3. Do you have any problems doing your usual activities (e.g. work, study, housework, family or leisure activities)?
◻No problems ◻Slight problems ◻Moderate problems
◻Severe problems ◻I am unable to
4. Do you experience pain or discomfort?
◻No pain ◻Slight pain ◻Moderate pain
◻Severe pain ◻Extreme pain
5. Do you ever feel worried, sad or unhappy?
◻Not worried, sad or unhappy ◻Slightly worried, sad or unhappy ◻Moderately worried, sad or unhappy
◻Severely worried, sad or unhappy ◻Extremely worried, sad or unhappy
6. We would like to know how good or bad your health is TODAY. Please mark an X on the scale.
7. Now, please write the number you marked on the scale in the box below.
3. Parent baseline questionnaire
PARTICIPANT ID:__________________________________INITIALS:__________________________________DATE:__________________________________
1. What is your age? ______________________________ years old
2. What is your gender?
◻Male ◻Female ◻Other
3. What is the highest level of education you have completed?
◻Year 10 or below ◻Apprenticeship ◻University degree
◻Year 12 ◻Certificate/diploma ◻Postgraduate degree
4. What is your postcode?__________________________________
5. What is your annual household income from paid work before tax?
◻Nil income ◻Less than $29,999 ◻$30,000-$59,999
◻$60,000-$89,999 ◻$60,000-$89,999 ◻Greater than $120,000
◻Would prefer not to answer
6. a) Have you ever received specific information about your child exercising after cancer?
◻Yes
◻No
◻Unsure
b) If yes, where did you receive information from (tick all that apply):
◻Doctors ◻Nurses
◻Other hospital staff (specify):__________________________________
◻Internet ◻Flyers/booklets
◻Other sources (specify):__________________________________
7. How satisfied are you with the information you have received about your child exercising after cancer?
8. How well do you feel that you understand the importance of your child exercising after cancer?
9. How many minutes a day and days a week of moderate-vigorous exercise do you think is recommended for children after cancer?
__________________________________minutes per day and__________________________________days per week
10. During a typical seven day period (a week), how many times on the average do YOU do the following kinds of exercise for more than 15 minutes? (write on each box the appropriate number)
11. During a typical seven day period (a week), how often do you engage in any regular activity long enough to work up a sweat (heart beats rapidly)?
◻Often ◻Sometimes ◻Never/Rarely
11. What is your child's age now?__________________________________years old
13. What is your child's gender?
◻Male ◻Female ◻Other
14. Approximately when were they diagnosed with cancer?__________________________________month__________________________________year
15. Approximately when did they complete treatment?__________________________________month__________________________________year
16. What was their initial cancer diagnosis?
◻Acute lymphoblastic leukaemia (ALL) ◻Neuroblastoma
◻Acute myeloid leukaemia (AML) ◻Wilms' tumour
◻Brain cancer (eg. Medulloblastoma, Glioma, Ependymoma) ◻Sarcoma of the bone (eg Osteosarcoma, Ewing's sarcoma)
◻Hodgkin's lymphoma ◻Soft tissue sarcoma
◻Non-Hodgkin's lymphoma (including Burkitt's lymphoma) ◻Rhabdomyosarcoma
◻Other:____________________________________________________________________
17. Do you know what level of risk it was defined as?
◻Standard ◻Low ◻Intermediate ◻High ◻Unknown
18. Has your child ever received any of the following treatments?
19. Please tick all the issues your child has experienced, which you believe was related to their cancer/treatment (past/current); or believe they may be at risk of experiencing in the future (late-effects) (future risk):
20. How do you feel about the amount of physical activity your child is doing now? They should be doing: ◻Less exercise
◻They do the right amount
◻More exercise
21. Would you like your child to do more exercise?
◻Not at all ◻Somewhat ◻Probably ◻Definitely
22. What benefits would you like your child to achieve by doing exercise (tick all that apply)?
◻Weight management ◻Reduced stress ◻Have more energy
◻Improve strength ◻Improve appearance ◻Improve fitness
◻Keep healthy ◻Improve balance ◻Reduce risk of late-effects (i.e. delayed effects from treatment)
◻Other:____________________________________________________________________
23. How important is it to you that your child is physically active? (Place an X)
24. Do you have any concerns about your child exercising after finishing cancer treatment?
◻Yes
◻No
If yes, what concerns do you have?:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
25. Please rank in order who would be the best person to discuss your child's exercise needs with? (Where the number 1 means this is the best person)?
______Doctor ____Nurse ____Exercise Physiologist ____Physiotherapist
______Other____________________________________________________________________
26. When do you think would be the best time to start working on improving your child's physical activity levels (select one)?
◻During treatment ◻At the end of treatment ◻After completing treatment
◻During follow-up visits ◻Not required
◻Other:____________________________________________________________________
Please read each statement and put a cross (X) that indicates how true the statement was of your family over the past four (4) weeks. There are no right or wrong answers.
4. Parent follow-up questionnaire
PARTICIPANT ID:__________________________________INITIALS:__________________________________DATE:__________________________________
Thinking about the physical activity assessments your child did:
1. The amount of information you received in the PICASSO study was:
◻Too much ◻Just right ◻Too little
2. a) Would you like your child to see an exercise physiologist again?
◻Yes
◻No
◻Unsure
b) If yes, how would you like to see them? (tick all that apply)
◻More face-to-face sessions ◻Online/Skype consultations
◻Telephone consultations ◻Monitoring with technology (e.g. phone apps)
◻Other (specify):____________________________________________________________________
3. How do you feel about the amount of physical activity your child is doing now? They should be doing: ◻Less exercise
◻They do the right amount
◻More exercise
4. Would you like your child to do more exercise?
◻Not at all ◻Somewhat ◻Probably ◻Definitely
5. How many minutes a day, and days a week, of moderate-vigorous exercise do you think is recommended for children after they have had cancer?
________________minutes per day and________________days per week
6. During a typical seven day period (a week), how many times on the average do YOU do the following kinds of exercise for more than 15 minutes? (write on each box the appropriate number).
7. During a typical seven day period (a week), how often do you engage in any regular activity long enough to work up a sweat (heart beats rapidly)?
◻Often ◻Sometimes ◻Never/Rarely
8. Did this study help to increase:
a) Your child's physical activity levels (your child who participated in PICASSO)?
◻Not at all ◻A little bit ◻Somewhat ◻Quite a bit ◻Very much so
b) Your other children's physical activity levels?
◻Not at all ◻A little bit ◻Somewhat ◻Quite a bit ◻Very much so
c) Your physical activity levels?
◻Not at all ◻A little bit ◻Somewhat ◻Quite a bit ◻Very much so
9. Did you like the help you received from the PICASSO study regarding exercise after cancer?
◻Yes ◻Somewhat ◻No
10. Did you get the help you wanted?
◻Yes ◻Somewhat ◻No
11. Did you need more help than you got?
◻Yes ◻Somewhat ◻No
12. Were you given more services than you needed?
◻Yes ◻Somewhat ◻No
13. Did the PICASSO study help you with your life?
◻Yes ◻Somewhat ◻No
14. After being a part of the PICASSO study, how satisfied are you with the information you received about your child exercising after cancer?
15. After being a part of the PICASSO study, how well do you feel that you understand the importance of your child exercising after cancer?
16. How satisfied are you with your decision to be part of the PICASSO study?
17. If you received recommendations to increase your child's physical activity levels from the PICASSO study, how well do you feel you understood them?
◻Tick if you didn't receive any recommendations
18. What suggestions do you have to improve the physical activity advice you received in the PICASSO study?
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
19. What suggestions do you have to improve the physical activity advice that is given during your child's cancer care (i.e. throughout your child's treatment and at their regular follow-up visits)?
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
20. What suggestions do you have to improve other parents' understanding of the role of exercise for children who have had cancer?
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
21. Was participation in this study burdensome to you in any way?
◻Not at all ◻A little bit ◻Somewhat ◻Quite a bit ◻Very much so
Reasons:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
22. Was participation in this study beneficial to you in any way?
◻Not at all ◻A little bit ◻Somewhat ◻Quite a bit ◻Very much so
Reasons:
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
23. Would you recommend other patients be involved in this study?
◻Yes, why:______________________________________________________________________________________________________
______________________________________________________________________________________________________
◻No, why:______________________________________________________________________________________________________
______________________________________________________________________________________________________
◻Unsure, why:______________________________________________________________________________________________________
______________________________________________________________________________________________________
24. Do you have any other comments about the PICASSO study?
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
______________________________________________________________________________________________________
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[Figure 1], [Figure 2]
[Table 1], [Table 2]
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