ParkinsonSupport; Palliative care for people with Parkinson's Disease and their caregivers

Parkinson*s disease (PD) is one of the most common neurodegenerative disorders.
PD affects approximately 1% of the population over the age of 65 in Western
countries. PD is an incurable disease and treatment exists of restraining
symptoms. As PD progresses, patients can suffer from a wide range of symptoms
like immobility, pain, fatigue, sleeping problems, cognitive deficits and
dementia. A nursing home admission is inevitable in 20-40% of the PD patients.
Disease management in advanced PD becomes more difficult, whereas the emphasize
on quality of life becomes more important. Patients with PD experience
considerable discomfort at the end of life and symptom burden is comparable to
advanced cancer patients.

Many PD patients could benefit from palliative care. Palliative care is *an
approach that improves the quality-of-life of patients and their families
facing problems associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification and
impeccable assessment and treatment of pain and other problems, physical,
psychosocial and spiritual*. A palliative care approach can be beneficial.
However, there is scarce knowledge about components for palliative care in PD.
Hasson et al reviewed current evidence and reported few problems. Problematic
is the identification of PD patients with palliative care. The absence of a
concrete starting point makes it difficult to identify palliative needs during
the disease course. A few specific disease symptoms have been recognized as
indicators. Special attention for palliative care needs might be at the first
episode of aspiration and the occurrence of key clinical features as visual
hallucinations, regular falls, dementia and admission to residential care.
However, the appearance of these specific disease symptoms do not sufficiently
lead to recognizing palliative care needs or referral to palliative care
services (PSC). PD patients and caregivers described a lack of knowledge of
PSC. If PD patients and caregivers received care from a PCS, they reported poor
coordination of care. Studies concludes that caregivers often feel alone in the
care for the patient with advanced PD and preparedness for death. Only a few PD
patients and caregivers receive palliative care in contrast to patients with
malignant diseases.
Four studies reported professionals experiences with (the concept of)
palliative care. Waldron et al showed that professionals have misconceptions on
their value of rehabilitation in the palliative stage. Professionals felt
unsure about the care they delivered in the palliative phase. Several studies
reported that professionals experienced a lack of education and competence in
this field. Furthermore, the collaboration between PSC and more general
professionals missed. Perceived barriers in the collaboration were inadequate
referral and lack of communication.

Most studies on patient needs evaluated patients with PD in early stages and
pay less attention to patients with advanced PD. However, a few studies found
unmet needs in advanced PD. Patients with advanced PD are cared for by family
members, usually older spouses.20 Schrag et al reported that caregiver burden
is greater with increasing disability, and with the symptoms of PD such as
hallucinations, depression and falls. Caregivers of patients with advanced PD
reported considerable changes in their life. Especially, spouses felt that
their primary role in the relationship changes, due to cognitive deficits and
speech problems of the patients. Caregivers struggle with caring for their
loved ones as long as possible and specifically with the point of admission to
a nursing home. Studies also reported that caregivers have fewer social
contacts and opportunities to socialize, reduced financial income and tend to
experience poor health, and this is particularly related to features of late
stage PD. Carter et al explored pre-death grief in caregivers of advanced PD
patients. Findings suggests that pre-death grief was a significant finding in
caregivers and more associated with the presence of patient*s cognitive
decline.

In order to address the knowledge gap, the ParkinsonSupport study aims to
identify the experiences in the last phase of life of people with Parkinson*s
disease, their family caregivers and professionals. Part of this project is
qualitative research, which exists of a qualitative after death study and a
multiple case study.

The research question addressed in this study is:

How do patients with advanced PD, their family caregivers and professionals
their problems, needs and received care?

This question will be explored by an examination of what patients, (former)
family caregivers and professionals experience and how they think palliative
care can be optimized. Important aspects of this exploration also includes
identifying terminal care strategies that already have been used in practice
and the identification of *red flags* in order to get more insight information
for timing palliative care interventions. Subsidiary questions emerging from
the research question are:

1. What opinions do patients, (former) family caregivers and professionals have
on the quality of care provided?
2. What are specific disease symptoms for timing palliative care needs in
advanced PD patients?
3. How do disease severity progress over 12 months in PD patients and what care
needs do patients and caregivers experience?
4. Which are the major decisions and symptoms in dying with Parkinson disease?

This study is divided in two parts. We will start with an explorative
qualitative after-death study. In-depth individual and focus group interviews
with former family caregivers and professionals will be held. The second part
exists of a qualitative prospective multiple case study design.24 This design
enables us to understand the circumstances and experiences of patients with
advanced PD, their family caregivers and professionals.

Explorative after death study
A topic list will be developed based on literature study. A pre-test will be
held in a test panel to ensure comprehensibility and completeness of the topic
guide. Subsequently, 10 professionals and 10 former family caregivers will be
interviewed. We don*t expect to cover the whole spectrum of experiences by 20
in depth interviews. Therefore, focus group interviews will be held with
professionals and caregivers until saturation is reached. This design allows us
to get in depth information about the needs of caregivers of patients with
advanced PD and professionals.

Multiple-case study
Patients and their family caregivers will be the subject of our multiple-case
study. We will follow 5 - 15 PD patients (and if present one family caregiver
per patient) to address disease severity progress over 12 months and the
experienced quality of life and quality of care. PD patients will be included
based on the surprise question: *would I be surprised if this patient died in
the next 12 months. Patients will be visited at home at baseline, six and 12
months after baseline to assess experiences, disease symptoms, quality of life
and quality of care. Data will be collected by in depth interviews with the PD
patient as well as his family caregiver. Next to interviews, questionnaires and
document analysis (for example care records) will be used to broaden our
understanding.

Interviews will be held at the patients home or another environment of their
choice. For each interview the patient will be asked if he/she wants to be
accompanied by a family carer. Preliminary on the interview, the communication
ability of the patient will be checked. The protocol will be adjusted on the
communication ability of the patient. The interview will take place when the
patient is in an *on-state*. If the patient is in an *off-phase*, the
interviewer will be organized another time.

Research activities can give potential emotional stress for the patient and
his/her carer. To reduce the risks of emotional stress, the interview will not
take longer than 40 minutes. Furthermore each questionnaire is short. If the
patient or her/his carer experience emotional stress, the researcher will refer
to the attending physician. If necessary, the researcher will contact the
physician in consultation with the patient.