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The ageing of the population is accompanied by an increase in the frequency of chronic illnesses, leading to a rise in the number of caregivers. These caregivers do not have the time to look after their own health, and they are very often in a deteriorated mental state with no knowledge of their level of fitness. A deterioration in their fitness can be a source of the development of diseases induced by a sedentary lifestyle. On the other hand, patients with chronic respiratory disease can benefit from respiratory rehabilitation (RR), which includes outpatient or home-based physical activity. The literature has demonstrated an improvement in the mental state of caregivers following a RR carried out by their loved ones without taking an interest in their fitness. The aim of the study will be to establish 1. a representation of the level of fitness and mental state of caregivers; 2. to assess the presence/absence of benefits on fitness and mental state of caregivers depending on the form of RR: home versus outpatient where the caregiver is not integrated in this last form.
The literature reports more anxiety and depressive symptoms , a greater psychological and social burden and a poorer quality of life in caregivers than in their non-caregivers peers. Knowing the fitness of caregivers, by means of an assessment of their abilities, would make it possible to define their profile, which should reflect an altered fitness linked to a state of ill-being. The results of these assessments would make it possible to establish a prevention policy, and following a rehabilitation programme for their patients, their health should improve. For caregivers who agree to take part in the study, their physical, mental and social health will be assessed. The total duration of the visit, including all the assessments, is estimated at 1h30. We expect the fitness and mental and social state of all the caregivers to deteriorate in line with the indicators available in the literature for people of the same age who are not carers. Following care of the patients, we expect an improvement in fitness and mental state of the carers.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| program of rehabilitation at home | Experimental | group of caregivers which their loved ones followed a program of rehabilitataion at home |
|
| a program of rehabilitation in a specialized center | Active Comparator | group of caregivers which their loved ones followed a program of rehabilitation in a specialized center |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| a program of rehabilitation | Other | physical activities, health education, psychosocial and motivational support |
|
| Measure | Description | Time Frame |
|---|---|---|
| functional capacity | achieve the highest number of steps on a stepper in 6 minutes | 8 weeks |
| Measure | Description | Time Frame |
|---|---|---|
| assessments of fitness | handgrip | 8 weeks |
| Short battery physical fitness test | SPPB (Short Physical Performance Battery) is the sum of the scores following 3 criteria: the balance test, the walking speed test and the chair rise test. This test makes it possible to evaluate an individual's physical performance. Score: 0 to 12 with best performance at 12. |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Claudine Fabre | Contact | +33 3 74 00 82 00 | claudine.fabre@univ-lille.fr |
| Name | Affiliation | Role |
|---|---|---|
| Claudine Fabre, PhD | Lille University | Study Director |
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| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 30661022 | Background | Houben CHM, Spruit MA, Luyten H, Pennings HJ, van den Boogaart VEM, Creemers JPHM, Wesseling G, Wouters EFM, Janssen DJA. Cluster-randomised trial of a nurse-led advance care planning session in patients with COPD and their loved ones. Thorax. 2019 Apr;74(4):328-336. doi: 10.1136/thoraxjnl-2018-211943. Epub 2019 Jan 19. | |
| 15540670 |
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| ID | Term |
|---|---|
| D000092862 | Psychological Well-Being |
| ID | Term |
|---|---|
| D010549 | Personal Satisfaction |
| D001519 | Behavior |
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Parallel assignment (2 groups)
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| 8 weeks |
| Assessment of the state of health felt by the two parts of the EuroQol Group questionnaire (1990), | Test of: 5 questions offering a score between 1 and 5. Final score: 5 the best result, 15 the worst result. Helps to indicate how good or bad a state of health is, with a graduated scale (like that of a thermometer) on which 100 is the best state of health you can imagine and 0 is the worst state of health you can imagine. you can imagine. This scale is numbered from 0 to 100:
| 8 weeks |
| Physical and mental fatigue questionnaire (Michielsen et al. 2003) | 10 questions regarding the usual state. With 5 answer options ranging from "never (1)" to "always (5)" The total score is between 10 and 50. (10 = less fatigue, 50 = significant fatigue) | 8 weeks |
| Charlson Comorbidity Score | Evaluates the level of comorbidity by considering the severity level of 19 predefined comorbidity disorders The investigator counts the number of points without indicating the items. Score 0 to 39 pts. 0 being the least and 39 being the serious | 8 weeks |
| Visual analog scales to measure shortness of breath and fatigue felt in the legs | Two score scales ranging from 0 to 10 assessing the intensity of fatigue, shortness of breath and fatigue in the legs. 0 being the least serious and 10 being the highest fatigue. | 8 weeks |
| Questionnaire on the Perceived Social Burden of Caregivers (Zarit et al., 1986) | 22 questions on the different feelings of caregivers regarding their personal situations in the context of patient care. Answers ranging from never (0) to almost always (4) Total score ranging from 0 to 88 pts 0 being the most serious month and 88 being the most serious. | 8 weeks |
| Anxiety and Depression Symptoms Questionnaire (Zigmond et al. 1983) | To detect anxious and depressive symptoms, the following interpretation can be proposed for each of the scores (A and D): Total score in 2 categories (A = anxiety and D = depression) 0 = least serious score 21 = worst score | 8 weeks |
| EPICES social insecurity questionnaire (Sass et al. 2006) | questions on the means, assistance, leisure and housing of the caregiver. The score is continuous, it varies from 0 (absence of precariousness) to 100 (maximum of precariousness). The threshold of 30 is considered the precariousness threshold according to EPICES. | 8 weeks |
| Seamark DA, Blake SD, Seamark CJ, Halpin DM. Living with severe chronic obstructive pulmonary disease (COPD): perceptions of patients and their carers. An interpretative phenomenological analysis. Palliat Med. 2004 Oct;18(7):619-25. doi: 10.1191/0269216304pm928oa. |
| 36655219 | Background | Grosbois JM, Gephine S, Kyheng M, Le Rouzic O, Chenivesse C. Improving the wellbeing of caregivers of patients with COPD using a home-based pulmonary rehabilitation programme. ERJ Open Res. 2022 Dec 12;8(4):00255-2022. doi: 10.1183/23120541.00255-2022. eCollection 2022 Oct. |
| 41781169 | Derived | Robic M, Grosbois JM, Racodon M, Le Rouzic O, Ramon P, Masson N, Fabre C, Gephine S. PRHOCARER study: protocol for a multicentre, convergent, mixed-methods trial assessing the effectiveness of pulmonary rehabilitation programmes and the needs of informal carers of people with chronic respiratory diseases. BMJ Open Respir Res. 2026 Mar 4;13(1):e003599. doi: 10.1136/bmjresp-2025-003599. |