Patients’ and caregivers’ experiences of the impact of Parkinson’s disease on health status

Figures & data

Table 1 Focus group sites and types

Patient focus groups
Language	Location	Onset of Parkinson’s disease type
English	Los Angeles, CA	Early age of onset (≤age 50)
English	Tampa, FL	Early age of onset (≤age 50)
English	Los Angeles, CA	Typical onset (>age 50)
English	Rochester, NY	Typical onset (>age 50)
Spanish	Sylmar, CA	Typical onset (>age 50)
Caregiver focus groups
English	Tampa, FL
English	Los Angeles, CA
Spanish	Sylmar, CA

Table 2A Sociodemographic characteristics of PD focus group participants, one-on-one interviewees, and caregivers

Sociodemographic characteristics	Patients in focus groups and interviews* n = 47	Caregivers** n = 15
Female, n (%)	26 (55.3)	13 (86.7)
Age (mean, years)	62.6	71.6
Marital status, n (%)
Married/living with partner	34 (72.3)	11 (73.3)
Separated or divorced	8 (17.0)	0 (0.0)
Widowed	3 (6.4)	1 (6.7)
Never married	2 (4.3)	2 (13.3)
Education, n (%)
No formal education	1 (2.1)	–
5th grade or less	3 (6.4)	–
6–11th grade	3 (6.4)	–
High school graduate or GED	6 (12.8)	–
Some college or two-year degree	9 (19.1)	–
Four-year college graduate	10 (21.3)	–
More than four-year college degree	15 (31.9)	–
Race/ethnicity, n (%)
White	37 (78.7)	10 (66.7)
Hispanic or Latino	10 (21.3)	4 (26.7)
Asian or Pacific Islander	0 (0.0)	1 (6.7)
African-American or Black	0 (0.0)	0 (0.0)
Native American, American-Indian or Alaskan Native	0 (0.0)	0 (0.0)
Relationship to care recipient, n (%)
Spouse	–	8 (53.3)
Son or daughter	–	2 (13.3)
Other relative	–	5 (33.4)

Notes:

* Includes 42 patients who were in five focus groups, and five patients who had one-on-one interviews; one focus group participant did not complete the background questionnaire;

** Includes 15 caregivers from three focus groups.

Abbreviation: PD, Parkinson’s disease.

Table 2B Clinical and functional status characteristics of PD focus group participants, one-on-one interviewees, and PD care recipients (from caregiver focus groups)

Clinical and functional status characteristics	Patients in focus groups and interviews n = 47*	PD care recipients n = 15**
Length of diagnosis with PD, mean (range), yrs
Early onset (n = 17 patients)	10.8 (4–10)	–
Typical onset (n = 31 patients)	5.1 (1–12)	–
Care recipients	–	10.3 (4–25)
Difficulties with walking, n (%)
No difficulty with gait or swing	9 (19.1)	4 (26.7)
Yes, I don’t swing arms or I tend to drag my leg	23 (48.9)	2 (13.3)
Yes, I have moderate amount of difficulty with walking, but usually don’t need assistance	10 (21.3)	3 (20.0)
Yes, I have severe problems with walking and usually need assistance	3 (6.4)	5 (33.3)
Yes, I can’t walk at all, even with assistance	0 (0.0)	1 (6.7)
Missing	3 (6.4)	0 (0.0)
Difficulties with hygiene, n (%)
No difficulty	13 (27.7)	2 (13.3)
Yes, a bit slow but don’t need help	31 (66.0)	7 (46.7)
Yes, slow with hygiene and need help to shower and bathe	2 (4.3)	2 (13.3)
Yes, need help with washing, brushing teeth, combing hair and going to the bathroom	0 (0.0)	2 (13.3)
Yes, need help with all hygiene and have Foley catheter	0 (0.0)	2 (13.3)
Missing	2 (4.3)	0 (0.0)

Notes:

* Includes 42 patients who were in 5 focus groups, and 5 patients who had one-on-one interviews; one focus group participant did not complete the background questionnaire;

** Includes 15 care recipients whose clinical and functional status characteristics were reported by caregivers from 3 focus groups.

Abbreviation: PD, Parkinson’s disease.

Table 3 Frequency of occurrence of each health-related quality of life theme by focus group characteristics (n = 1022 comments from 43 patient and 15 caregiver focus group participants)

Theme	Commens out of 1022 total n (%)	Early vs typical onset*		Caregiver vs patient		Language
		Early onset (n = 326) n (%)	Typical onset (n = 412) n (%)	Caregiver (n = 284) n (%)	Patient (n = 738) n (%)	English (n = 828) n (%)	Spanish (n = 194) n (%)
Physical functioning	447 (43.7)	120 (36.8)	191 (46.4)	136 (47.9)	311 (42.1)	349 (42.2)	98 (50.5)
Social and role functioning	109 (10.7)	39 (11.9)	32 (7.8)	38 (13.3)	71 (9.6)	93 (11.2)	16 (8.2)
Emotional impact	76 (7.4)	25 (7.6)	19 (4.6)	32 (11.2)	44 (6.0)	62 (7.5)	14 (7.2)
Fears and uncertainty about the future	64 (6.3)	17 (5.2)	28 (6.8)	19 (6.6)	45 (6.1)	53 (6.4)	11 (5.7)
Stigma and other feelings about PD	150 (14.7)	62 (19.0)	64 (15.5)	24 (8.4)	126 (17.1)	132 (15.9)	18 (9.3)
Coping mechanisms	120 (11.7)	39 (11.9)	59 (14.3)	22 (7.7)	98 (13.3)	93 (11.2)	27 (13.9)
Benefits of having PD	56 (5.5)	24 (7.3)	19 (4.6)	13 (4.5)	43 (5.8)	46 (5.5)	10 (5.2)
Total number of comments	1022 (100)	326	412	284	738	828	194

Notes:

* Patient focus groups only; 738 comments; early onset means age of onset/diagnosis ≤ 50 years; P ≤ 0.05 for difference across each bolded pair of comparisons on frequency of theme.

Abbreviation: PD, Parkinson’s disease.

Table

Welcome	Welcome. I want to thank you for coming today. My name is _____________ and I will be the facilitator for today’s group discussion. I am a researcher and I work for the RAND Corporation. We also have ______________ present to take notes for us. [My colleague(s) __________ are also sitting in on today’s discussion and they may have a few questions for you later on] We invited you to take part in this group discussion today because you have been diagnosed with Parkinson’s disease. We would like to talk with you today about your health and health care, about the impact the disease has had on your day-to-day life, on your family, on your ability to do things, about the problems you face as a result of the disease, and about how you feel about having Parkinson’s in general What we learn from today’s discussion will help us better understand the impact Parkinson’s disease has on the people who have it and this information in turn will help us develop treatments or services to help improve the quality of life for people who have Parkinson’s disease
Ground rules	Before we begin, I would like to review a few ground rules for the discussion I am going to ask you several questions and I’d like to give everyone a chance to give their opinions. We do not have to go in any particular order but we do want everyone to take part in the discussion. We ask that only one person speak at a time We’re interested in your opinions and whatever you have to say is fine with us. There are no right or wrong answers. We are just asking for your opinions based on your own personal experience. We are here to learn from you Don’t worry about having a different opinion than someone else. But please do respect each other’s answers or opinions If there is a particular question you don’t want to answer, you don’t have to Feel free to treat this as a discussion and to ask questions of each other and to respond to what others are saying, whether you agree or disagree We will treat your answers as confidential. We are not going to ask for anything that could identify you and we are only going to use first names during the discussion. We also ask that each of you respect the privacy of everyone in the room and not share or repeat what is said here in any way that could identify anyone in this room We are taperecording the discussion today and also taking notes because we don’t want to miss any of your comments. However, once we start the tape recorder we will not use anyone’s full name and we ask that you do the same We will not include your names or any other information that could identify you or your family in any reports we write. We will tear up our notes and destroy the audiotapes after we complete our study and publish the results Finally, this discussion is going to take about two hours and we ask that you stay for the entire meeting. At the end of the discussion we will give you $65 to thank you for participating
	Does anyone have any questions before we start?
Introduction	I’d like to go around the table starting on my right and have each person introduce him or herself. Please tell us your first name only and tell us how long you have had Parkinson’s.
Group discussion	Parkinson’s disease affects different people in different ways. Today we would like to talk about the effect Parkinson’s disease has had on your life Topic 1. Physical functioning The first thing that we’d like for you to discuss is how Parkinson’s disease has affected you physically How has Parkinson’s disease affected your ability to do things? Tell us about any physical activities that you have stopped doing because of your Parkinson’s disease? Tell us about any physical activities that you now need help with as a result of your Parkinson’s disease? Tell us about any physical problems you’ve experienced as a result of Parkinson’s disease? If necessary: How has Parkinson’s disease affected your sleep? Topic 2. Impact on emotional status Now, we’d like to discuss how Parkinson’s disease has affected you emotionally 6. How has Parkinson’s disease affected you emotionally? 7. Tell us a little about how you are coping or feeling now about your Parkinson’s disease? 8. Tell us about any emotional problems or issues you may have experienced as a result of your Parkinson’s disease? Topic 3. Social and role functioning (family, work, and others, public versus private life) Now I’d like you tell us a little about how having Parkinson’s has affected your day-to-day life 9. How has having Parkinson’s affected your day-to-day life? 10. How has having Parkinson’s affected your daily routine? 11. Are there any activities that you can no longer do because of your Parkinson’s disease? (eg, work, hobbies, sports, social events, etc 12. How has having Parkinson’s affected your family? 13. How has having Parkinson’s affected the things you do with your family? 14. How has having Parkinson’s affected your social life? Topic 4. Stigma and other feelings about Parkinson’s Now I’d like us to talk about how you think Parkinson’s has affected your relationship with other people 15. Are there any activities that you have given up or that you prefer not to do anymore because of your Parkinson’s disease? Tell us about that 16. How have your friends and relatives reacted to your Parkinson’s disease? 17. Do you tell people that you have Parkinson’s disease? 18. Why or why not? 19. Do you think people treat you differently than they normally would because you have Parkinson’s? 20. If yes: Tell me about that. How do they treat you? 21. How do you feel about having Parkinson’s? Topic 5. Fears 22. Do you have any concerns about what is going to happen to you in the future as a result of the Parkinson’s disease? 23. What do you think is going to be worse for you in the future? Topic 6. Coping mechanisms and positive feelings Now I’d like us to talk about different things you do to cope with your Parkinson’s disease and the problems that you have as a result of your Parkinson’s disease 24. Is there anything in particular you are doing to help treat or deal with your disease? 25. Finally, there are lots of ways people experience illnesses such as this – some bad and some good. Are there any good things or benefits to having Parkinson’s disease? 26. Has anything in your life changed for the better since you found out you had Parkinson’s disease? 27. If yes: Tell us about that.
10. Review and wrapup	Thank you for coming today and for sharing your opinions with us. We hope you enjoyed the discussion today