3.1.1. Introduction

Good communication is at the heart of every interaction between people with Parkinson’s disease, their carers and health professionals. Issues that need to be considered include:

• style, manner and frequency of communication content and means of transmission
• ease of access for those receiving information, and consistency of content
• recognition that people with Parkinson’s disease have particular clinical problems requiring carefully and sensitively tailored communication
• communication goals including self-management by people with Parkinson’s disease and involvement of carers.

Communication for people with chronic diseases can be focused on two goals:

• collaborative care in which clinicians are seen as experts in medical conditions, while people with a condition are seen as experts in living with their own condition and are encouraged to identify their problems and define goals.
• self-management education that provides people with problem-solving and management skills for the self-care of a condition.

For people with Parkinson’s disease the main objective should be collaborative care, although interventions such as the Expert Patient Programme,²⁵ which concentrates on self-management, will have a part to play for some individuals. In addition, the NSF for Long-term (Neurological) Conditions (2005),¹⁴ especially Quality requirement 1, which relates to a person-centred service, should underpin the principles of communication with people with Parkinson’s disease and their carers.

3.1.2. Methodology

Six studies^26–31 have addressed communication about the diagnosis of Parkinson’s disease. Since there were few RCTs in this area, qualitative studies and cross-sectional studies using questionnaire data collection tools were included. The literature search included the area of self-help in relation to communication and education of people with Parkinson’s disease. However, no studies were found which specifically addressed this topic.

Qualitative studies were assigned evidence level 3 in accordance with NICE guidance.¹

A qualitative study^29,30 using an interpretive phenomenological method identified a number of themes, but did not include a clear audit trail demonstrating how these were derived from the original patient data collected.

A cross-sectional self-report questionnaire study^29,30 collected response data from physiotherapists and occupational therapists who observed video records of patients.

It should be noted that:

• the PROPATH program^26,27 was a pharmaceutically sponsored educational service only available in the USA
• the survey from the Parkinson’s Disease Society (PDS)³¹ was based on a questionnaire of members in the UK.

The PROPATH program consisted of a disease assessment questionnaire, which was completed by people with Parkinson’s disease or their carer. The questionnaire was analysed and computer-generated reports were returned to physicians and individualised recommendation letters returned to people with Parkinson’s disease. The questionnaires were analysed by an advisory board of neurologists with broad experience in movement disorders. The reports and recommendation letters were primarily aimed at reducing medication side effects.

3.1.3. Evidence statements

Two RCTs^26,27 were found, which assessed the effectiveness of the PROPATH education program, as a novel approach to communication with people with Parkinson’s disease.

A 6-month follow-up PROPATH study²⁶ (N=155) showed multiple benefits of the PROPATH intervention which are listed in Table 4.1. (1+)

Table 4.1

Effectiveness of PROPATH program versus standard care.

A separate 12-month follow-up PROPATH study (N=73)²⁷ observed only one improved clinical outcome in the intervention group: ‘patient perception of general health and psycho-logical well-being’, which declined in the standard care group (p=0.04). (1+)

A multinational Global Parkinson’s Disease Survey²⁸ of people with Parkinson’s disease (N=201) and their carers (N=176) assessed what factors affect health-related quality-of-life (HRQL). This study found three factors which had an impact on quality of life and explained 60% of the variability in HRQL between people with Parkinson’s disease:

• depression as measured by the Beck Depression Inventory (BDI) (p<0.001)
• ‘satisfaction with explanation of condition at diagnosis’ (p<0.05)
• ‘feelings of optimism’ which may be related to the style and manner of communication, especially at initial diagnosis (p<0.05). (3)

An interpretative phenomenological study²⁹ in 16 people with Parkinson’s disease identified the theme of ‘gaining formal knowledge’ and provided the following information on their perspectives:

• Once diagnosed, people with Parkinson’s disease identified a need to know more about the condition.
• Information provided at diagnosis was difficult to process by most participants.
• By their own descriptions, they were in ‘shock’ and did not recall the dialogue between themselves and the diagnosing physicians.
• There were a few exceptions to this and some clearly recalled being given a diagnosis but very little additional information.
• The human significance was passed over and objectified by what is known about the disease and treatment. Self-care and day-to-day coping with the illness were ignored. (3)

In a questionnaire study, 30 physiotherapists and occupational therapists (N=91) were asked to compare the video-recorded conversations of people with Parkinson’s disease (N=4) and people with cardiac conditions (N=4) without the soundtrack. The aim was for the therapists to gauge their initial impressions of the people seen. The therapists were told the people being interviewed suffered from a neurological disorder, but the clinical diagnosis was not revealed. The video-recorded conversations were of interviews conducted by two doctors each of whom conversed with two individuals from each group using a semi-structured script covering non-medical aspects of the their personal histories. The study found there were significant differences in the ratings for all 15 variables. The therapists observed the people with Parkinson’s disease to be:

• more anxious/worried/apprehensive; angry/irritable/hostile; suspicious/unforthcoming; morose/sad/down; bored/detached; tense/ill at ease (p<0.001)
• more introverted/shy; anxious/dissatisfied; sensitive/emotional; passive/dependent; less intelligent (p<0.001)
• enjoying the conversation less well (p<0.001) relating less well to the interviewer (p<0.001)
• holding up their own end of the conversation less well (p<0.001). (3)

In addition to their observations, the therapists were asked how likeable the person with Parkinson’s disease appeared to them. People with Parkinson’s disease appeared less likeable (p<0.001). (3)

It is worth noting that the people with Parkinson’s disease in the above study had mild to moderate symptoms and were leading active lives. The impressions made by the therapists were formed from a short exposure to them on a video recording and therefore have the potential of being modified by further contact and greater knowledge of the individual. These results indicate that negative impressions may be induced in clinicians by a lack of verbal expressiveness from the person with Parkinson’s disease, and this could influence the development of their relationship with their clinician.

Another study³² (N=1200) assessed patient satisfaction with the educational information they had received (it did not assess the amount of information provided or who provided it). The findings are summarised as follows.

• The average patient education score indicated that participants were neither particularly satisfied nor dissatisfied with the information they received.
• There was no relation between this score and sex, age or Hoehn and Yahr stage.
• When the analysis included all patients, a higher patient education score was associated with higher HRQL scores in all subscales of the Short Form 36 (SF-36), except for physical function and bodily pain.
• Patients were most satisfied with regard to ‘role emotional’ and least satisfied with regard to ‘general health.’
• After excluding patients with advanced disease (Hoehn and Yahr 4–5), the regression coefficient increased in several subscales (i.e. patients with less severe disease had better quality-of-life scores), see Table 4.2 for details.
• Scores in all subscales of SF-36 were generally lower in patients with more advanced disease, demonstrating that the disease stage is associated with a decline in HRQL involving all aspects of daily living.
• Motor complications associated with therapy had a substantial effect on each subscale of SF-36. (3)

Table 4.2

Relationship of patient education with SF-36 (regression coefficients of patient education score).

The UK PDS³¹ questioned 2,500 of their members from November 1997 to January 1998, regarding communication. Of these members, 1,693 (68%) replied and details of selected responses are given in Table 4.3. (3)

Table 4.3

PDS survey (1999).

3.1.4. From evidence to recommendation

People with Parkinson’s disease have to live with the consequences of any clinical decision. Given the nature of the therapies currently available for the condition, there are difficult tradeoffs to be made over time between the beneficial therapeutic effects and the short- and long-term adverse consequences of a particular treatment. The choice of initial therapy should aim to optimise the quality of life over the whole expected lifespan of an individual. It is essential that these decisions are specific to an individual and agreed between the person with Parkinson’s disease and the appropriate clinicians after a period of reflection including involvement of the family.

The evidence shows that the way in which the diagnosis of Parkinson’s disease is communicated is important and often not well done. People with Parkinson’s disease may need the information originally given at diagnosis to be repeated and will want more information as the condition progresses. This is one important role that could be carried out by a health professional such as the PDNS (see Chapter 10). No evidence is available on what format this information should best be given in, but a range of products are already available from Parkinson’s UK.

Particular features that need to be taken into account when communicating with people with Parkinson’s disease are:

• occurrence of cognitive impairment and depression
• occurrence of a communication impairment (which increases in severity with increasing severity of the disease process)
• negative impression that may be given by a person with Parkinson’s disease need for emotional support
• involvement of carers.

Effective communication requires well-trained staff and an environment that enables sensitive discussions, as these discussions might lead to emotional distress. The UK PDS published guidance about communication with people with Parkinson’s disease and their carers.³³ The recommendations arose from a group of 17 people with Parkinson’s disease, with ages ranging from 47 to 67, and their carers.

It is important to communicate with carers, particularly when people with Parkinson’s disease have cognitive impairment or depression. Carers need:

• general factual information about the condition
• specific information, if permission is given, about the person with Parkinson’s disease
• information about services and entitlements to care assessment and support procedures advice and support both to optimise the quality of the communication interaction and also to continue effective communication with the person with Parkinson’s disease as the condition progresses
• advice and support to maintain their health and well-being.

3.1.5. Recommendations

1.

Communication with people with Parkinson’s disease should aim towards empowering them to participate in judgements and choices about their own care. [2006]

2.

In discussions, aim to achieve a balance between providing honest, realistic information about the condition and promoting a feeling of optimism. [2006]

3.

Because people with Parkinson’s disease may develop impaired cognitive ability, communication problems and/or depression, provide them with:

• both oral and written communication throughout the course of the disease, which should be individually tailored and reinforced as necessary
• consistent communication from the professionals involved. [2006]

4.

Give family members and carers (as appropriate) information about the condition, their entitlement to a Carer’s Assessment and the support services available. [2006]

5.

People with Parkinson’s disease should have a comprehensive care plan agreed between the person, their family members and carers (as appropriate), and specialist and secondary healthcare providers. [2006]

6.

Offer people with Parkinson’s disease an accessible point of contact with specialist services. This could be provided by a Parkinson’s disease nurse specialist. [2006]

7.

Advise people with Parkinson’s disease who drive that they should inform the Driver and Vehicle Licensing Agency (DVLA) and their car insurer of their condition when Parkinson’s disease is diagnosed. [2006]