Introduction of a Dyspnea Service in the Netherlands

Chronic Obstructive Pulmonary Disease (COPD) is a progressive disease causing
about 7000 deaths in the Netherlands each year, thereby being the fourth
leading cause of death
(1). Studies have shown a high symptom burden in patients with
end-stage COPD, at least similar to patients with incurable lung cancer (2).
The main symptom is dyspnea, or breathlessness, which increases as disease
progresses. It often results in emergency hospital admissions, which results in
a high burden of disease on both patient, relatives and the health care system.
Patients with COPD who experience refractory symptoms may be referred to a
tertiary rehabilitation centre, where adequate patient education is provided
including help with breathlessness, in an inpatient setting. However, patients
with advanced respiratory failure are not always eligible for such programmes
due to their instability, or they do not wish to be away from home for such a
long period of time. Those patients are mostly dependent on their
physiotherapist for breathlessness management. However, dyspnea is a complex
symptom with cognitive and behavioural aspects. Most physiotherapists are not
trained to address breathlessness in its full complexity.
In recent years, Booth and Spathis have developed the
breathing-thinking-functioning model (BTF), which conceptualizes the three
cognitive and behavioural reactions to dyspnea (3).

Breathing domain: Dyspnea causes dysfunctional breathing patterns with an
increased respiratory rate and use of accessory muscles, leading to inefficient
(dead space) ventilation. Furthermore, Patients with COPD who feel breathless
tend to focus on the in-breath instead of on the out-breath.This promotes
dynamic hyperinflation which increases the breathlessness and the work of
breathing.
Thinking domain: misconceptions such as *I will suffocate*, but also memories
of earlier episodes of dyspnea, lead to anxiety and distress in many patients.
This leads to tachypnea which increases dyspnea.
Functioning domain: Many breathless patients avoid physical activity. This
leads to both isolation and deconditioning, which supports the vicious circle
of dyspnea.

The intervention that will be investigated in this study is called Ademen
Denken Doen (ADD). ADD is a Dutch version of BTF, adjusted to the health care
situation in the Netherlands. There are two noteworthy differences between ADD
and breathlessness services that have previously been investigated in other
countries (mostly the UK and Germany) (6,7,8,9,10):
The first difference concerns participating health care professionals.
In existing breathlessness services, palliative care teams have a leading role,
including occupational therapists. The Dutch situation is different since in
most hospitals, palliative care is only available as an inpatient service. In
the Netherlands, respiratory nurses and physiotherapists play an important role
in supporting patients with COPD. Therefore, for this study we will set up an
ADD training for respiratory nurses and physiotherapists. If this pilot study
is successful (see chapter 2 for objectives), we aim to make the intervention
applicable to physiotherapists and respiratory nurses outside our own hospital.
The second difference between existing dyspnea services and ADD
concerns the targeted population. ADD is set up primarily for patients with
COPD. Existing dyspnea services are not disease-orientated but
symptom-orientated, and treat all patients with refractory dyspnea. The main
reason for our focus on COPD is that ADD is set up by a pulmonology department
instead of a palliative care team. The majority of dyspnoic patients that we
see suffer from COPD. As mentioned before, this is a large patient category
with a high burden of disease who frequently have unmet needs, which justifies
our choice to focus on COPD for this pilot. Furthermore, the etiology of
dyspnea is different in COPD from dyspnea in heart failure, cancer or pulmonary
fibrosis. COPD leads to dynamic hyperinflation, which is worsened by rapid
shallow breathing * a pattern of breathing promoted by anxiety (11). Anxiety is
highly prevalent in COPD (12), probably due to its unpredictable course and due
to the dyspnea itself. Many patients with COPD report fear of suffocation. Both
the dysfunctional breathing pattern and the irrational fears elicited by
breathlessness, are key elements of BTF/ADD. We therefore assume that
specifically patients with COPD have even more to gain from ADD than patients
with other casues of dyspnea. Nevertheless, if this intervention is successful,
in the future the service should be made available to other patient groups.

Primary objective:
to assess feasibility of ADD. Pre-defined criteria for feasibility is: 75
percent of included patients complete the intervention.

Secondary objectives:
1. To describe the components and practical aspects of ADD. These will be
described in each patients CRF. Off note, ADD is an intervention that is
different for each patient: depending on the most important component for them
(breathing/thinking/functioning) and how many sessions they need to learn to
control their breathlessness. Therefore we describe the number of sessions in
each CRF.
2. To evaluate patiens* experiences with ADD, assessed with semi-structured
interviews with patients and carers after 6 weeks.

The intervention will be delivered by a multidisciplinary team, formed by a
pulmonologist, a physiotherapist with expertise in COPD, and 3 respiratory
nurses.
Prior to start of the study, physiotherapist and respiratory nurses receive ADD
training by pulmonologist, who has received an BTF training in Cambridge.
Step 1: All pulmonologists, residents and respiratory nurses of the Spaarne
Gasthuis recruit patients with COPD with refractory breathlessness who fullfill
the inclusion critera (see chapter 4).
Step 2: Patients who are eligible are given an information letter by the
recruiting health care professional. Within 1 to 7 days, they receive a call
from a member of the ADD team, asking if they have any questions concerning the
study and whether they want to participate.
Step 3: Assessment for eligibility by pulmonologist (if not eligible, this is
noted in case record form); first appointment within one week.
Step 4: First appointment (approximately 1.5 hrs). Patient comes with key
(informal) carer.
- Explanation of ADD by pulmonologist and nurse.
- Patient signs informed consent form
- Aided by nurse, patient fills in the CRQ
- Informal caregiver gives NRS rating for distress due to patient*s
breathlessness
- Patient meets physiotherapist
- Current medication is reviewed by pulmonologist. Medication for symptom
control is optimised if necessary (e.g., morphine for dyspnea).
- Patient receives ADD booklet with breathing exercises and relaxation
exercises and a handheld fan
Step 5: At the end of the first appointment, the customized intervention
program is made together with the patient.
1. All patients will have at least one session with the physiotherapist. The
maximum number of sessions is six (once every week).
2. All patients will have weekly contact with the respiratory nurse; at least
two times in the hospital (combined with physiotherapist), other contacts may
be by telephone. If it is too burdensome for patients to come to the hospital,
they will receive a home visit. During these contacts, the nurse will go
through the given information again, coach the patient, and assess whether the
intervention is helpful for the patient.
3. Patients will receive a handheld fan and a leaflet with instructions for
relaxation and breathing techniques. The use of those techniques and the
handheld fan will be practiced with the nurse and the physiotherapist.
Step 6: After the six week study period, patient comes for the final visit
together with informal caregiver.
- Aided by nurse, patient fills in the CRQ
- Informal caregiver gives NRS rating for distress due to patient*s
breathlessness
- Member of ADD team conducts a semi-structured interview with both patient and
informal caregiver to explore their experiences with ADD.
Step 7: After the last patient has fulfilled the intervention, the ADD team
undergoes a structured interview regarding the intervention.

See under Study design.

The only burden for participants will be the hospital visits. However, these
visits will be minimised as much as possible by combining them with other
hospital visits where possible. If visiting the hospital is too burdensome,
home visits will be arranged.