Interdisciplinary Approach for Refractory Dyspnoea

NCT04015817 | Completed

• 1 other identifier: LPNE_02
• Study Type: interventional
• Target: 45
• Locations: 1 country
• Sites: 1

Brief Summary

Dyspnoea is a very common symptom in many diseases, not only cardiorespiratory, but also renal or neurological diseases. It can be defined as " difficult, laboured and uncomfortable breathing \[…\]. It is a subjective symptom. As pain, it involves both the patient's perception of the sensation and his reaction to it ". It can occur during even moderate effort and sometimes also at rest and tends to increase as the disease causing it progresses. Dyspnoea has therefore a significant on the various aspects of the patient's daily life and those around him or her (travel, leisure, daily activities, etc.) leading to a decrease in quality of life and possibly to anxiety and/or depressive symptoms. Among a vulnerable, elderly population that benefits from home care, it affects more than 46 % of patients in north-west of Switzerland. Despite the handicap generated by daily dyspnoea, this complaint is often difficult to recognize by health professionals or family and friends, due in particular to a feeling of helplessness in the care provided. In addition, the treatment of the disease responsible for dyspnoea by the doctor does not always provide relief. In this context, it is essential that people with dyspnoea, families and friends are supported in their experiences and acquire techniques and alternatives that help them better manage dyspnoea on a daily basis. The first objective is to evaluate the feasibility of a dyspnoea support program led by a respiratory care team non-specialized in palliative care and its effect on quality of life and control of dyspnoea symptoms by patients . A second objective is to measure patient's satisfaction about the program.

Conditions

Dyspnea

Keywords

Dyspnea; Well being; respiratory care team non-specialized in palliative care

Outcome Measures

Primary Outcomes (1)

• Change measured by the Chronic Respiratory Questionnaire (CRQ) between the initial interview (T0) and the progress report in patients with refractory dyspnea

  Minimally important difference is reflected by a change in score of 0.5 on a 7 point scale

  an average of four month

Secondary Outcomes (1)

• Measure patient satisfaction with the program in the progress report : visual analogic scale

  an average of four month

Study Arms (1)

Etude longitudinale

EXPERIMENTAL

Work on positions, ventilatory education, use of a fan, pulmonary rehabilitation, stress management, mindfulness meditation, psychosocial services, support from the mobile palliative care team

Other: paramedical and non-pharmacological services

Interventions

paramedical and non-pharmacological services OTHER

Paramedical and non-pharmacological services (work on positions, ventilatory education, use of a fan, pulmonary rehabilitation, stress management, mindfulness meditation, psychosocial services, possible support from the mobile palliative care team)

Etude longitudinale

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• refractory breathlessness on exertion or rest (Medical Research Council (MRC) dyspnea scale score ≥2), despite optimum treatment of the underlying disease, as deemed by the responsible physician;
• advanced disease such as cancer, chronic obstructive pulmonary disease (COPD), chronic heart failure, interstitial lung disease or motor neuron disease;
• willing to engage with proposed therapy (physiotherapy);
• able to provide informed consent in French.

You may not qualify if:

• Breathlessness of unknown cause;
• A primary diagnosis of chronic hyperventilation syndrome;
• Completely house (or hospital or nursing home) bound

Sponsors & Collaborators

• Ligue Pulmonaire Neuchâteloise: lead

Study Sites (1)

Ligue pulmonaire neuchâteloise

Peseux, Canton of Neuchâtel, 2034, Switzerland

Location

Related Publications (8)

• Booth S, Burkin J, Moffat C, Spathis A. Managing Breathlessness in Clinical Practice. 1st ed. New York : Springer; 2013. 265 p.

  BACKGROUND

• Comroe, J. Some theories on the mechanism of dyspnea. In: Howell J, Campbell, E. Breathlessness: proceeding of an international symposium on breathlessness. Oxford: Blackwell; 1965.

  BACKGROUND

• Higginson IJ, Bausewein C, Reilly CC, Gao W, Gysels M, Dzingina M, McCrone P, Booth S, Jolley CJ, Moxham J. An integrated palliative and respiratory care service for patients with advanced disease and refractory breathlessness: a randomised controlled trial. Lancet Respir Med. 2014 Dec;2(12):979-87. doi: 10.1016/S2213-2600(14)70226-7. Epub 2014 Oct 29.

  PMID: 25465642 BACKGROUND

• Clark, G, Marechal, M. COPD knowledge in a swiss frail selected population. European respiratory Society Congress 2018

  BACKGROUND

• Pautex S, Vayne-Bossert P, Bernard M, Beauverd M, Cantin B, Mazzocato C, Thollet C, Bollondi-Pauly C, Ducloux D, Herrmann F, Escher M. Validation of the French Version of the Edmonton Symptom Assessment System. J Pain Symptom Manage. 2017 Nov;54(5):721-726.e1. doi: 10.1016/j.jpainsymman.2017.07.032. Epub 2017 Jul 25.

  PMID: 28751077 BACKGROUND

• Beaumont M, Couturaud F, Jego F, Pichon R, Le Ber C, Peran L, Roge C, Renault D, Narayan S, Reychler G. Validation of the French version of the London Chest Activity of Daily Living scale and the Dyspnea-12 questionnaire. Int J Chron Obstruct Pulmon Dis. 2018 Apr 30;13:1399-1405. doi: 10.2147/COPD.S145048. eCollection 2018.

  PMID: 29750026 BACKGROUND

• Bocerean C, Dupret E. A validation study of the Hospital Anxiety and Depression Scale (HADS) in a large sample of French employees. BMC Psychiatry. 2014 Dec 16;14:354. doi: 10.1186/s12888-014-0354-0.

  PMID: 25511175 BACKGROUND

• Bourbeau J, Maltais F, Rouleau M, Guimont C. French-Canadian version of the Chronic Respiratory and St George's Respiratory questionnaires: an assessment of their psychometric properties in patients with chronic obstructive pulmonary disease. Can Respir J. 2004 Oct;11(7):480-6. doi: 10.1155/2004/702421.

  PMID: 15505701 BACKGROUND

MeSH Terms

Conditions

Dyspnea

Condition Hierarchy (Ancestors)

Respiration Disorders; Respiratory Tract Diseases; Signs and Symptoms, Respiratory; Signs and Symptoms; Pathological Conditions, Signs and Symptoms

Study Officials

• Jean-Marc Fellrath, Prof

  Hopital Neuchatelois

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: July 1, 2019
• First Posted: July 11, 2019
• Study Start: August 1, 2019
• Primary Completion: January 1, 2022
• Study Completion: June 1, 2022
• Last Updated: July 6, 2022

Record last verified: 2022-06

Data Sharing

• IPD Sharing: Will not share

Locations

CH (1)