|Rank||Categories||Items or ideas included||Frequency||Importance score|
Emotional coping, relationships, and social aspects||(i) Dealing with fear about the future.|
(ii) Coping strategies.
(iii) Coming to terms with living with a chronic illness.
(iv) Challenges for marital relationship (including helping unaffected spouses come to terms with living with a chronically ill individual).
(v) Availability of programs that promote a sense of wellbeing in dealing with disease.
(2)||Legal, financial, and bureaucratic implications of life with PD||(i) Legal implications of living with PD (e.g., maintenance of driver’s license; proxy decision making).|
(ii) Financial implications of living with PD (e.g., public financial assistance and subsidies; financial and estate planning).
(iv) Managing government paperwork.
(v) Where to find local resources for people with disabilities.
(vi) Health-care system interactions.
Empowerment and self-advocacy||(i) Managing one’s own expectations.|
(ii) Managing expectations of family and friends.
(iii) Strategies to ensure assertive and informed participation in health-related decisions.
Nonmotor symptoms||(i) Sleep difficulties.|
(ii) Bowel, and bladder dysfunction.
(iii) Mood changes.
(iv) Difficulties with cognition.
(v) Holistic approaches to managing nonmotor symptoms.
(5)||Strategies and lifestyle tips to cope with symptoms||(i) Practical solutions for common symptoms experienced in PD.|
(ii) Use of adaptive technologies to facilitate activities of daily living and home safety.
Physical approaches to symptom management||(i) Role of exercise in PD management.|
(ii) Information on accessible home activity programs.
(iii) Management of daily physical challenges (e.g., rolling over in bed or getting out of chair).
PD symptoms||(i) Definition of “symptoms of parkinsonism.”|
(ii) Differentiation of PD symptoms from medication side-effects.
Medications||(i) Correct use of medications (e.g., timing, quantity).|
(ii) Common drug side-effects and their management.
(iii) Relationship between diet and medications.
|(9)||Scientific information||(i) Genetic basis of PD and heritability.|
(ii) Current promising areas of research.
(iii) Etiology of PD.