Table 2: Results of needs assessment from nominal group technique regarding what PD patients believe to be missing from their healthcare and educational experience.

RankCategoriesItems or ideas includedFrequencyImportance score

(1) 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.
34 143

(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).
(iii) Transportation.
(iv) Managing government paperwork.
(v) Where to find local resources for people with disabilities.
(vi) Health-care system interactions.
19 76

(3) 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.
16 50

(4) Nonmotor symptoms(i) Sleep difficulties.
(ii) Bowel, and bladder dysfunction.
(iii) Mood changes.
(iv) Difficulties with cognition.
(v) Holistic approaches to managing nonmotor symptoms.
11 65

(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.
15 47

(6) 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).
11 46

(7) PD symptoms(i) Definition of “symptoms of parkinsonism.”
(ii) Differentiation of PD symptoms from medication side-effects.
10 35

(8) 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.

Though there were 16 respondents, the frequency is > than 16 due to the fact that multiple responses from individual participants were collapsed into single categories.