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Children and young people (CYP) with chronic kidney disease (CKD) say that physical activity, school, social activities and tiredness are the main issues they want to improve. As CKD in CYP is a rare disease, there is not much research into understanding these aspects, making it difficult to know how to support patients better. This project aims to investigate how physically active CYP with CKD are, and what psychosocial factors are affected by their illness. CYP aged 6-18 will take part in a battery of physical activity tests, par-take in an online survey looking at physical activity, quality of life, mental health, fatigue and strengths and difficulties, and take part in an interview to better understand what it is like to live with CKD.
The aim of this research is to document and evaluate the relationship between physical activity patterns and behaviours and psychosocial outcomes in children and young people with CKD. A second aim is to explore through qualitative methods contextual factors that may explain the type, direction and nature of relationships identified in the quantitative phase.
This research will be conducted in multiple phases to maximise recruitment.
Participants recruited through NHS Scotland will take part in all 3 phases. Only Phase 2 (online survey) will additionally be disseminated through patient organisations across the UK to maximise recruitment.
In phase 1, participants will take part in a battery of physical activity functioning assessments including multistage bleep tests, sit-up tests, and handgrip tests. Participants will also be given an accelerometer measure to track movements over 7 days. Participants taking part in this phase will also complete the phase 2 online survey which includes a physical activity, Quality of life, Fatigue, Strength and Difficulties, and Mental health questionnaire.
In phase 3, participants from phase 1 will return and take part in an interview to gain deeper insights into psychosocial influences and limitations in engaging in physical activity as well as gaining a better understanding of the impact of CKD on psychosocial wellbeing.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Physcial Activity Exercises | Other |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Exercise | Behavioral | Physical activity promotion and engagement |
|
| Measure | Description | Time Frame |
|---|---|---|
| Physical Activity: cardiorespiratory fitness | Multistage Bleep Test - This test entails a progressively incremental jogging/running challenge along a 20-meter distance while keeping to an auditory signal. The test is terminated when participants cannot maintain pace to the auditory signal or upon participant refusal to continue. | Baseline |
| Physical Activity: forearm strength | Handgrip test - This test assesses static forearm strength using a handheld dynamometer. | Baseline |
| Physical Activity: muscular endurance | Sit-up test - This test will assess muscular endurance, particularly abdominal strength (dynamic trunk strength). | Baseline |
| Accelerometer | Participants will be given an accelerometer to be worn around their wrist. This device tracks step counts continuously for 7-days. Average daily step counts, and average sedentary time will be calculated. | Baseline |
| Measure | Description | Time Frame |
|---|---|---|
| Frequency of physical activity | The Physical Activity Questionnaire for older children (PAQ-C) aged 8-14 will be used to measure general levels of PA throughout the school year. Physical activity summary score will be calculated on a scale from 1-5. A score of 1 indicates low physical activity, whereas a score of 5 indicates high physical activity. | Baseline |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Silene ten Seldam | Contact | +447341596914 | silenetenseldam@yahoo.co.uk | |
| Pelagia Koufaki, PhD | Contact | +441314740000 | pkoufaki@qmu.ac.uk |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Glasgow Royal Hospital for Children | Glasgow | United Kingdom |
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| ID | Term |
|---|---|
| D051436 | Renal Insufficiency, Chronic |
| D009043 | Motor Activity |
| D000092862 | Psychological Well-Being |
| ID | Term |
|---|---|
| D051437 | Renal Insufficiency |
| D007674 | Kidney Diseases |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
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| ID | Term |
|---|---|
| D015444 | Exercise |
| D011788 | Quality of Life |
| ID | Term |
|---|---|
| D009043 | Motor Activity |
| D009068 | Movement |
| D009142 | Musculoskeletal Physiological Phenomena |
| D055687 | Musculoskeletal and Neural Physiological Phenomena |
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| Frequency of physical activity | The Physical Activity Questionnaire for adolescents (PAQ-A) aged 14-18 will be used to measure general levels of PA throughout the school year. Physical activity summary score will be calculated on a scale from 1-5. A score of 1 indicates low physical activity, whereas a score of 5 indicates high physical activity. | Baseline |
| Quality of Life | The multidimensional Paediatric Quality of Life Inventory (PedsQLv4) questionnaire will be used to estimate scores that reflect the domains of physical functioning, emotional functioning, social functioning, and school functioning. A quality of life score will be calculated on a scale from 0-100. Higher scores = Better HRQOL. | Baseline |
| Fatigue | The multidimensional Fatigue scale (PedsQLv3 Fatigue) questionnaire will be used to estimate scores that reflect the domains of general fatigue, sleep/rest fatigue and cognitive fatigue. A Fatigue HRQOL score will be calculated on a scale from 0-100. Higher scores = Better HRQOL and fewer problems or symptoms | Baseline |
| Mental Health | The Revised Child Anxiety and Depression Scale (RCADS) will be used to estimate scores related to the following subscales: separation anxiety disorder, social phobia, generalized anxiety disorder, panic disorder, obsessive compulsive disorder, and low mood (major depressive disorder). Each subscale will be calculated on a scale ranging from 0-18 and 0-30. From this t-scores can be calculated. Low severity: T-score below 65 Medium severity: T-score between 65-70 High severity: T-score above 70 | Baseline |
| Strengths and Difficulties | The Strength and Difficulties Questionnaire (SDQ) will be used to estimate scores related to the following subscales: emotional symptoms, conduct problems, hyperactivity/inattention, peer relationship problems, prosocial behaviour. A Total difficulties score will be calculated on a scale from 0-40. Higher scores = more difficulties. | Baseline |
| Qualitative exploration of experiences, attitudes, and preferences | Semi structured interviews with participants and families will be used to to gain deeper insights into patient experiences, attitudes, preferences, and future direction | within 1-2months after primary outcomes have been completed |
| D005261 |
| Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D002908 | Chronic Disease |
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D001519 | Behavior |
| D010549 | Personal Satisfaction |
| D006304 | Health Status |
| D003710 | Demography |
| D015991 | Epidemiologic Measurements |
| D011634 | Public Health |
| D004778 | Environment and Public Health |