Table 5 Cognitive Demands Table

A1 Evaluate Motor Symptoms.

Establishing the extent to which the PwP’s motor symptoms have improved/ declined/ remained stable since the last clinical consultation.

A1.1 The reliability of the PwP/Caregiver’s self-report can be dependent on the social, educational, or cognitive status of the PwP/Caregiver.

A1.2 Lack of time in consultation with PwP to elicit information on all symptoms.

A1.3 Important changes in symptoms can be masked by the PwP/Caregivers tendency to focus on the one symptom that is most salient/problematic for them at that moment.

A1.4 Clinical examination/observation of PwP’s motor symptoms during the consultation may not reflect the symptoms they are experiencing at home/in their daily life.

A1.5 Dyskinesia and Tremor are sometimes confused by PwPs/Caregivers in self-reports.

A1.1 The reliability of the PwP/Caregiver’s self-report can be dependent on the social, educational, or cognitive status of the PwP/Caregiver.

A1.2 Lack of time in consultation with PwP to elicit information on all symptoms.

A1.3 Important changes in symptoms can be masked by the PwP/Caregivers tendency to focus on the one symptom that is most salient/problematic for them at that moment.

A1.4 Clinical examination/observation of PwP’s motor symptoms during the consultation may not reflect the symptoms they are experiencing at home/in their daily life.

A2 Evaluate Non-Motor Symptoms.

Establishing the extent to which PwP’s non-motor symptoms have improved/ declined/ remained stable since the last clinical consultation.

A2.1 The reliability of the PwP/Caregiver’s self-report can be dependent on the social, educational, or cognitive status of the PwP/Caregiver.

A2.2 Lack of time in consultation with PwP to elicit information on all symptoms.

A2.3 Important changes in symptoms can be masked by the PwP/Caregivers tendency to focus on the one symptom that is most salient/problematic for them at that moment.

A2.4 Clinical examination/observation of PwP’s motor symptoms during the consultation may not reflect the symptoms they are experiencing at home/in their daily life.

A2.1 The reliability of the PwP/Caregiver’s self-report can be dependent on the social, educational, or cognitive status of the PwP/Caregiver.

A2.2 Lack of time in consultation with PwP to elicit information on all symptoms.

A2.3 Important changes in symptoms can be masked by the PwP/Caregivers tendency to focus on the one symptom that is most salient/problematic for them at that moment.

A2.4 Clinical examination/observation of PwP’s motor symptoms during the consultation may not reflect the symptoms they are experiencing at home/in their daily life.

A3 Evaluate PwP well-being overall.

Identifying which symptoms are the most important to address

A3.1 This requires integration of a number of different variables; motor/non motor symptoms, life habits of the PwP, adverse effects and the progression of the disease and then integrating that with the need to address symptoms deemed to be most salient/problematic by the PwP/Caregiver.

A3.1 This requires integration of a number of different variables; motor/non motor symptoms, life habits of the PwP, adverse effects and the progression of the disease and then integrating that with the need to address symptoms deemed to be most salient/problematic by the PwP/Caregiver.

B1 Establish adherence to existing Care Plan.

Is there evidence of non-adherence to prescribed pharmacological or supporting therapy care plan.

B1.1 Identifying non-adherence can be difficult to achieve via self-report.

B1.2 Establishing whether symptoms are related to advances in disease state or non-adherence to prescribed Care Plan is important for future clinical decisions.

B1.3 Identifying why non-adherence is occurring (i.e. barriers) in order to overcome them. This can be time consuming and is dependent on the social, educational, or cognitive status of the PwP/Caregiver.

B1.1 Identifying non-adherence can be difficult to achieve via self-report.

B1.2 Establishing whether symptoms are related to advances in disease state or non-adherence to prescribed Care Plan is important for future clinical decisions.

B1.3 Identifying why non-adherence is occurring (i.e. barriers) in order to overcome them. This can be time consuming and is dependent on the social, educational, or cognitive status of the PwP/Caregiver.

B2 Assess effectiveness of current medication/Adverse effects.

Is the medication they are currently taking providing the optimal Quality of Life for the PwP and how to balance the disease symptoms with drug induced adverse effects.

B2.1 Depending on the disease stage the PwP has reached and how long they have been on medication, the available effective pharmacological treatments become limited.

B2.2 Making step-by-step adjustments to the medication in order to achieve an optimal solution is time consuming.

B2.3 Lack of objective data to monitor the effects of changes made to the medication plan.

N/A

B3 Assess effectiveness of supporting therapies.

Are the Supporting therapies they are currently receiving adding value to the PwP’s overall QOL.

B3.1 Supporting therapies are not always an available option and if available can take time to access.

B3.2 Even if a PwP has received a care plan from a supporting clinician it is difficult to establish their level of motivation/ adherence to that plan ongoing when at home.

B3.1 Supporting therapies are not always an available option and if available can take time to access.

B3.2 Even if a PwP has received a care plan from a supporting clinician it is difficult to establish their level of motivation/ adherence to that plan ongoing when at home.

C1 Establish/Re-establish PwP goals in relation to Care Plan ongoing

Does the existing Care Plan allow the PwP to achieve their daily lifestyle goals.

C1.1 This requires integration of a number of different variables; motor/non motor symptoms, life habits of the PwP, adverse effects and the progression of the disease.

C1.1 This requires integration of a number of different variables; motor/non motor symptoms, life habits of the PwP, adverse effects and the progression of the disease.

C2 Identify barriers to existing care Plan/future Care Plan implementation by PwP

What are the likely barriers to adherence to existing/future Care Plan and how these can be overcome.

C2.1 This is dependent on the availability of data (via self-report) of previous adherence/non-adherence and is impacted by social, educational, or cognitive status of the PwP/Caregiver.

C2.1This is dependent on the availability of data (via self-report) of previous adherence/non-adherence and is impacted by social, educational, or cognitive status of the PwP/Caregiver.

D1 Prescribe pharmacological therapy(ies)

What are the optimal suite of drugs including appropriate dosage and format to prescribe ongoing.

D1.1 This requires integration of a number of different variables; motor/non motor symptoms, life habits of the PwP, adverse effects and the progression of the disease.

D1.2 Depending on the disease stage the PwP has reached and how long they have been on medication, the available effective pharmacological treatments become limited.

D1.3 This needs to be achieved by small ‘step by step’ changes personalized to a particular PwP.

D1.4 Lack of objective data to monitor the effects of changes in the Care Plan.

N/A

D2 Prescribe Supporting Therapy(ies)

What Supporting Therapies ongoing would complement the prescribed drug therapy and add value to the PwP’s overall QOL.

D2.1 Supporting therapies are not always an available option and if available can take time to access.

D2.2 Even if a PwP has received a care plan from a supporting clinician it is difficult to establish their level of motivation/ adherence to that plan ongoing when at home.

D2.1 Supporting therapies are not always an available option and if available can take time to access.

D2.2 Even if a PwP has received a care plan from a supporting clinician it is difficult to establish their level of motivation/ adherence to that plan ongoing when at home.

E1 Establish timing for next consultation

What is the optimal time lapse before the next clinical consultation.

E1.1 Following up on ‘step by step’ changes to care plans can be difficult as typically clinician cannot see the PwP as frequently as they would like to in non-private settings.

E1.2 This is dependent on the disease stage and whether the PwP is fluctuating/ unstable or in a relatively stable state but it can be difficult to establish this from self-report alone or from clinical examination during a given consultation.

E1.1 Following up on ‘step by step’ changes to care plans can be difficult as typically clinician cannot see the PwP as frequently as they would like to in non-private settings.

E1.2 This is dependent on the disease stage and whether the PwP is fluctuating/ unstable or in a relatively stable state but it can be difficult to establish this from self-report alone or from clinical examination during a given consultation.

E2 Initiate referrals for Supporting Therapies defined in Care Plan

Is there sufficient justification/access to Supporting Therapies and how should this be achieved.

See D2.1 and D2.2

N/A

E3 Provide update/report to lead clinician and other MDT members

Identifying which pieces of clinical information need to be shared with the various team members in the MDT.

E3.1The sharing of clinical data between clinicians and across MDTs is typically achieved by a variety of methods such as telephone, clinical report, email and/or regular team meetings and is dependent on the context in which the care is being delivered.

E3.1 The sharing of clinical data between clinicians and across MDTs is typically achieved by a variety of methods such as telephone, clinical report, email and/or regular team meetings and is dependent on the context in which the care is being delivered.