The aims of this study are to investigate:1. How and when neurologists communicate the diagnosis of PD in diagnostic and post-diagnostic consultations, particularly focusing on timing, content, communication style and the impact of neurologist…
ID
Source
Brief title
Condition
- Movement disorders (incl parkinsonism)
Synonym
Research involving
Sponsors and support
Intervention
Outcome measures
Primary outcome
Aim 1: Duration and content of information provided during diagnostic and
post-diagnostic consultations by the neurologist; Number and type of
uncertainty statements by the neurologist;
Aim 2: Experienced levels of stress by the neurologist;
Aim 3: Patients* and their significant others* levels of satisfaction and
trust, feelings of uncertainty and anxiety, recall of information, and in-depth
reports about the communication with the neurologist.
Secondary outcome
n/a
Background summary
How physicians communicate about PD during diagnostic and any post-diagnostic
consultations may have important consequences for patients* well-being.
Communication in the (post)diagnostic phase currently may be suboptimal, as
patients have reported to feel insufficiently educated about the course and
prognosis of their disease.
Several issues may hamper the communication when neurologists communicate the
diagnosis of PD, including the complexity of information, persisting
uncertainty about diagnosis and disease progression, and unpredictable
treatment effects. Moreover, among patients potential cognitive impairments as
well as strong emotional reactions to the bad news may negatively impact
information processing.
It is largely unclear how neurologists should optimally inform their patients
about PD. Support in conducting diagnostic and post-diagnostic conversations
tailored to patient preferences, for example through communication skills
training, might help them further improve their communication skills. First, we
need insight in how these consultations are presently conducted, how they are
experienced by patients, their significant others and neurologists, and their
psychological impact on everyone involved.
Study objective
The aims of this study are to investigate:
1. How and when neurologists communicate the diagnosis of PD in diagnostic and
post-diagnostic consultations, particularly focusing on timing, content,
communication style and the impact of neurologist characteristics.
2. How patients and their significant others experience these consultations,
particularly focusing on their information recall, evaluation
(satisfaction/trust) and emotional experience of the consultations and impact
on their psychological well-being; and
3. How these consultations are experienced by the neurologists conducting them,
focusing on their experienced emotional burden and the impact of their
tolerance for uncertainty.
Study design
A prospective mixed-methods observational longitudinal design to capture both
factual observations and subjective experiences. Qualitative interview data are
combined with quantitative data gathered through questionnaires and
video-recorded consultations with a total follow up duration of 2 months.
Study burden and risks
Burden for patients and significant others
• Three questionnaires need to be completed by each participant: preceding the
diagnostic consultation (T0), shortly after it (T1), and two months later (T2).
At T1, the researcher additionally assesses patients' cognitive functioning
using a screening instrument (15 minutes). If a second diagnostic consultation
is planned directly after the first diagnostic consultation, participants are
asked to complete an additional questionnaire directly after the second
consultation (Pat-T1b, Car-T1b). Questionnaire completion takes 50-90 minutes
in total, divided over three or four time points.
• A video recording is made of the diagnostic consultation(s), which may be
experienced as disruptive by patients
• A subset of 25 patients is purposively selected and invited to participate
in an in-depth qualitative interview - six weeks after the first diagnostic
consultation - at the location of their preference, which will take 30-60
minutes of their time.
Meibergdreef 9
Amsterdam 1105 AZ
NL
Meibergdreef 9
Amsterdam 1105 AZ
NL
Listed location countries
Age
Inclusion criteria
Participants are:
1. patients referred to a Neurology out-patient clinic by the GP for a first
diagnostic consultation for suspected Parkinson disease;
2. the significant others of the patients in 1.
Inclusion criteria:
For patients:
• 18 years of age or older
• Referral to Neurology outpatient clinic for suspected Parkinson*s disease
• Participation in the study (evidenced by the Informed Consent) by the
neurologist to whom the patient has initially been referred
For patients* significant others:
• 18 years of age or older
• Accompanying patient to the Neurology outpatient appointment(s).
Exclusion criteria
A potential subject who meets any of the following criteria will be excluded
from participation in this study:
For patients:
- Insufficient Dutch language proficiency
- Pre-existing, known severe cognitive condition that would hinder
questionnaire completion and/or interview participation
- Previous analysis for suspected PD by a neurologist
- Other severe medical condition which may lead to reduced life expectancy or
severe impairments to daily life
- No informed consent
For patients* significant others:
- Insufficient Dutch language proficiency
- Severe cognitive impairment that would hinder questionnaire completion and/or
interview participation
- No informed consent
Design
Recruitment
Followed up by the following (possibly more current) registration
No registrations found.
Other (possibly less up-to-date) registrations in this register
No registrations found.
In other registers
| Register | ID |
|---|---|
| CCMO | NL71998.018.19 |