ONLINE SUPPORT GROUPS FOR PARKINSON’S PATIENTS; A PILOT STUDY OF
Morton A. Lieberman PhD
Andre Wizlenberg PhD
Mitch Golant PhD
Marie Wakahiro MSW
Mariann DiMinno RN, MA
Michael Aminoff MD
Chad Cristen MD
(A) Will PD patients participate in online, professionally led support groups? (B) What are their
demographics characteristics and PD severity? (C) Are such groups beneficial? (D) Should
patients be grouped for stage of disease? Depression and quality of life were assessed..66 people
were assigned to a 20-week, professionally facilitated online support group. Participants were
assigned to one of 2 groups types based on patient similarity; homogeneous and heterogeneous.
PD patients appear to readily enroll in online groups. Compared to PD patients in traditional
support groups, the online were younger, less depressed and had higher quality of life. Dropouts
(39%) were high. Overall patients showed improved quality of life, no overall changes were
observed in depression. Participants in the homogenous groups reported a significant in decrease
Morton A. Lieberman PhD
University of California, San Francisco
3333 California Street Box 0824
San Francisco, Ca. 94118
Key Words: Parkinson’s Disease, support group, Internet
The study was funded by a California Department of Health Services Center grant
University of California, San Francisco
The Wellness Community
University of California, San Francisco
University of California, San Francisco
University of California, San Francisco
University of California, San Francisco
Patients coping with Parkinson’s disease (PD) may be good candidates for online interventions.
As a progressive, chronic disease, patients face increasing problems: sleep disturbances,
difficulty with swallowing, difficulties in managing the activities of daily living (ADLs), bladder
and bowel disturbances, and sexual dysfunction. PD patients become increasingly disabled and,
frequently, less mobile. As a consequence of disease progression, patients experience many
psychosocial consequences stemming from their illness. It has been estimated that from 40 to 60
percent of patients suffer from clinically significant depression (Klaassen, Verhey, Sneijders, de
Vet, van Praag ,1995; Schrag, Jahanshahi, Quin, 2000). Patients’ quality of life is often
diminished (Klaassen, Verhey, Sneijders, de Vet, van Praag ,1995; Schrag, Jahanshahi, Quin
2000; Peto, Jenkinson, Fitzpatric 1998; Bushnell, Martin 1999; Damiano, Snyder, Strausser,
William, 1999). To address these various problems many patients turn to support groups for
This pilot study asked four questions; (A) Will PD patients participate in online,
professionally led groups that address their disease-related psychosocial problems? (B) What is
the demographics and severity of PD for those who are willing to participate in online groups?
(C) Are such groups beneficial? (D) Should patients be grouped for stage of disease, their ages,
the length of time since they were diagnosed or simply enroll patients as they apply for an online
group? Our study targeted two critical psychosocial areas for assessing the impact of the
intervention: depression and quality of life.
Support groups, either self-directed (usually referred to as self-help or mutual aid groups)
or those led by professionals have become embedded in our society as an important part of the
health care system. In 1997, Kessler (1997) reported the lifetime incidence of participation in
support groups was 25 million and the one year incidence rate was 7.1%. Many with chronic
illnesses turn to support groups for help with the psychosocial sequela of their illness. Although
traditional support groups are a very common and effective form of help, there are limitations to
these groups, the most prominent of which is the need to be physically present in the group. For
patients who live in an isolated area or are unable to commute due to illness, support group
attendance becomes unrealistic. As a consequence, there has been a growing trend toward using
online support groups (OSGs), which allow an individual to seek help without leaving his or her
home. The advent of online communications and the rapid spread of Internet access have led to
self-directed and professionally led support for a variety of health problems.
Access to computers and the Internet have dramatically increased in every demographic
segment of the American population since the mid-1990s. A recent Pew Foundation report on
Internet use found that 104 million American adults had Internet access at the end of 2000 (Pew
Internet & American Life Project, 2001). Although there are still income disparities in Internet
access, the gap is narrowing: 38% of households with less than $30,000 annual income had
Internet access by the end of 2000 (compared to 28% of such households in June 2000). This
report also found that 82% of households with more than $75,000 annual income had Internet
access by the end of 2000. African-American and Hispanic household access to the Internet now
exceeds 60%, and it increased by 22% (African American) and 17% (Hispanic) in the second
half of 2000 alone. A significant number of Internet users are accessing health information by
this means. Another Pew Foundation report (Pew Internet & American Life Project 2003) found
that by December 2002 54% of Internet users (63 million Americans) had visited a website that
provides health-related information or support. Sixty-three percent of those between the ages of
50 and 64 and 57% of those 65 and older used the Internet for obtaining health information.
Minority participation rates are similar.
The Internet and Help.
Online groups address a variety of health problems including recovering addicts, sexual-
abuse survivors (Finn and Lavitt, 1994), bereaved parents (Schwab, 1995), depression (Houston
and Cooper, 2002), mental illness (Perron, 2002), diabetes (Loader and Muncer, 2002), eating
disorders (Winzelberg, 1997,Harvey-Berino, Pintauro, et al. (2002), and gambling (Cooper,
2001). The most frequently studied online support groups address cancer patients, especially
women with breast cancer (King, 1994).
Hundreds of Internet-delivered groups now exist for cancer patients. Klemm, Bunnell,
Cullen, Soneji, Gibbons, & Holeck (2003) reviewed the literature on online cancer support
groups and noted that, while encouraging, the literature is dominated by small samples of
primarily Caucasian breast cancer patients (six of ten studies). Of those studies, the earliest and
most extensively assessed online support groups is the Comprehensive Health Enhancement
Support System, CHESS (Gustafson, Bosworth, Hawkins, Boberg, & Bricker, 1992). Initial
findings indicate that women find CHESS beneficial and easy to use (Shaw, McTavish,
Hawkins, Gustafson, & Pingree, 2000). A recent randomized, controlled trial of the network
found that participants assigned to the CHESS condition reported increased social support and
competence with seeking online information (Gustafson, et al 2001).
The paper’s authors have found in their studies of women with breast cancer that a semi-
structured, professionally facilitated, asynchronously delivered Internet support group was
effective in reducing stress and depression symptoms in a randomized clinical trial of patients
with primary breast cancer (Winzelberg, et al 2003). In another study, we found that participants
in a synchronous breast cancer support group obtained significant reductions in depressed mood
and subjective pain and significant increases in post-traumatic growth (Lieberman, et at 2003).
Overall, the majority of published studies on Internet-based support indicate that such
interventions are positive. The intervention model used in the PD pilot is based on the authors
previous online experience with cancer patients.
Despite the vigorous expansion of support groups serving PD patients and their
caregivers (180 groups were identified throughout California) (Lieberman, 2002), studies of the
scope and utility of such groups are limited. A few studies have examined the support needs of
PD patients. Ehmann, Beninger, Gawel and Riopelle (1990) assessed the methods of coping,
social support, and depressive symptoms in PD patients found that an increase in cognitive
coping led to a decrease in depressive symptoms. Sanders (1999) examined the relationship
between coping strategies (emotion-focused and problem-focused), level of disease uncertainty,
and functional impairment with depression in both PD patients and their caregivers. His data
suggested that the use of emotion-focused coping strategy may lead to poorer adjustment and an
increase in reported depressive symptoms. Posen, Moore, Tassa, Ginzburg, Drory, and Giladi
(2000) reported on their experience in conducting a support group for young women with PD.
The absence of empirical studies of PD support groups led us, prior to the development of
the intervention, to conduct a survey study of current practices in PD support groups. Based on a
stratified random sample survey of 17 National Parkinson’s Foundation sponsored groups in
California (Lieberman, 2000) we found that the basic structure of group meetings was similar
across groups and included introduction of new members, roll call, checking in with other
members, a speaker, discussion time, and refreshments/social time. Topics of discussion
included traveling with PD, wills, trusts, durable power of attorney for healthcare, nursing home
planning, humor/personal stories surrounding disease, respite services, question and answers
update on members/friends, displays of famous people with PD, advocacy (letter writing to
elected officials), communication with a neurologist, keeping a daily log, legal/financial issues,
applying for Medicare, new treatments, medication, exercise, and coping with depression.
Based on the survey, we found that 20% were new to the groups (0-1 year) and 20% had
participated from 1 to 2 years. The remaining participants were long-term members of their
group. We found that members learned about their group from friends and relatives (40%);
newspaper articles (23%); their physician or other health professional (20%); The National
Parkinson's Foundation (10%); and the Internet (2%). Patients who participated in the support
groups appear to be mostly older, retired, Caucasian, and relatively well educated. The sample
was characterized by moderate to severe PD. Many had been coping with the illness over a
number of years, and 68% for more than 5 years. The illness was clearly taking its toll on the
sample, with 64% reporting clinical levels of depression. Finally, using selected interviews and
survey questions, we were able to identify issues concerning PD patients that helped us design
the online intervention.
The Internet study.
Sixty-six patients, after signing human subjects consent forms, completed baseline
questionnaires at the study’s web site (http://www.ucsf.edu/pdchat/) and were then assigned to
groups. Three of the groups were composed of a demographic range of PD patients (age and time
since diagnosis; heterogeneity) and three were assigned to homogenous groups (two young onset
groups (YO) (less than 60 years old), and one newly diagnosed group (ND) i.e., diagnosed
within the past 2 years. Participants completed measures at baseline and at the end of the 20-
week-long group (post).
Each group met for 1/12 hours weekly. In addition to the synchronous chat room (real-
time online communication), participants in each group were provided with a bulletin board
(posting messages at any time they chose) specific to their group for communicating with each
other outside of the specified meeting time. To insure privacy, participants received their own
login name and password. In addition to the support group, three Health Education chats were
scheduled at a time when members could ask a PD expert any question on PD (e.g., medications,
sleep problems and sexuality).
The groups were facilitated by trained Wellness Community mental health professionals.
The groups encourage the expression of thoughts and emotions, receiving and offering of
support, and development of new ways to cope with PD. Prior to beginning the groups, each of
the group facilitators participated in an 8-hour educational orientation to PD conducted by
UCSF’s Parkinson Center personnel. The purpose of this education was to expose the facilitators
to special issues and characteristics of the illness (they had previously led both online and face-
to-face support groups for cancer patients). All facilitators were involved in weekly 45-minute
online synchronous supervision sessions. The supervisory sessions enabled the clinical
supervisor to provide direct feedback to the facilitators on their interventions. Supervision
consisted of a review of the past week's support group messages and patterns of participation as
well as methods of deepening the interactions among participants. Excerpts from transcripts were
used in the online supervision.
Sample and Recruitment
We generated interest in our study through informational flyers and letters sent to the
California PD support groups. Flyers were also posted in the waiting rooms at the University of
California, San Francisco (UCSF) Parkinson’s Disease Clinic and Research Center, and clinic
physicians also informed their patients about this project. Additionally, we advertised our study
to a targeted group of California professionals belonging to the Movement Disorder Society.
Public service announcements were posted on the National Parkinson’s Foundation (N.P.F.)
website and various Parkinson online discussion boards. We also wrote an article for the N.P.F.
newsletter describing the study and demonstrated the use of our intervention at a Parkinson’s
disease symposium in the San Francisco Bay area.
Participants were provided with instruction on how to access the Internet, online support
group and other website features prior to the onset of the group. They were invited to go online
with the project coordinator prior to the start of their group. Each participant was asked to
indicate times they were available for the online group. Matching patients to group times proved
to be more complex than we had anticipated. If we could not match the patients’ available times,
two times for two groups were offered to the patient.
1) Center for Epidemiological Study Depression Scale [CES-D] (Radloff, 1977). This is
a 20-item, self-report measure of depressive symptomatology. Respondents rate symptoms in the
past week on a 4-point scale of intensity or frequency. The CES-D correlates highly with self-
report and clinician ratings of depression and shows good internal consistency (alpha ranges
2) Parkinson's Disease Questionnaire [PDQ39] (Peto and Fitzpatric, 1998; Damiano,
Snyder, Strausser, and William, 1999). This is a 39-item questionnaire assessing quality of life
including subscales measuring; mobility, ADL, stigma, cognition, communication, and bodily
discomfort. (alphas range from .79 to .94 for the six scales reported in this study).
3) Functional Status Questionnaire [FSQ] (Rubenstein, et al, 1998). Five selected items
from the FSQ measures symptoms associated with PD including speech, writing, freezing,
tremor, and mobility were assessed using 5-point scales, with 0 being normal and 4, severe
(alpha for total score=.54). This measure was used as a moderator in our analysis of outcomes.
4) Exit Interviews. After the group ended, we scheduled telephone appointments with
about 50% of the participants. Efforts were made to ensure representation from all six groups.
These interviews averaged an hour each, asking about problems in using the chat rooms, how
they compared to their experiences in face-to-face PD support groups, and the emotions or issues
they found difficult to express in the online groups.
(A) Will PD patients participate in online, professionally led groups that address their
psychosocial problems associated with the disease?
Of the 65 patients assigned to one of the six group, 12(18%) were unable to attend their
assigned or alternate group times (4 homogenous, 6 heterogeneous) and 21 (32%) patients
dropped out of the groups (participated in less than four meeting). Dropouts included 12 patients
assigned to the homogenous and 9 assigned to the heterogeneous groups.
Thus, only 32 (49%) participants completed baseline and post-intervention measures.
No significant differences were found on baseline outcome measures between dropouts and those
who remained in the study. Analysis of gender, employment, and marital status revealed no
statistically significant difference between the patients assigned to the heterogeneous and
The attrition rates were high. Ordinarily, the consensus in group therapy is that about
20% drop out after a few meetings. Our rate, excluding no shows, was 32%, further limiting the
possibility of generalization.
(B) What is the demographic and level of PD for those who are willing to participate online?
Six percent learned about the project from physicians, 5.5% saw our flyer, 74% located
us through Internet searches, 11.5% from the N.P.F. newsletter, and 3% from our presentations
to local support groups. The average age of participants was 60.2 years (SD 9.2). Sixty-eight
percent were male, and 75% were married. One percent of participants had less than a high-
school education, 4% were high- school graduates or equivalent, 46% completed a four-year
college degree, and 50 % had completed graduate or professional school. Almost all participants
defined themselves as Caucasian (98.5%). The remaining participant was Asian. Twenty-seven
percent of participants were currently employed. The average time since PD diagnosis was 5.7
years (SD 5.5).
To help understand the characteristics of PD patients who chose an online group, we
compared them to our survey results of N.P.F. support groups on age, severity of PD symptoms,
depression (CES-D) and Quality of Life (PDQ39). Those attracted to the online groups were
substantially younger, much less depressed (64% of the survey sample met criteria for clinical
depression whereas only 40% of the online sample at time one was categorized as clinically
depressed) and reported higher quality of life. No differences between the severity of PD
symptoms or length of PD were observed between the two samples (Table1). The magnitude of
the age differences and number of years since diagnosis may obviously contribute to the
differences on psychosocial measures.
Are such groups beneficial?
A series of paired t-test of the entire sample revealed that there was a statistically
significant improvement in Quality of Life PDQ39. [Baseline, 193.4 (SD 97.5), Post= 158.9 (SD
69.1), t = 2.73 (df,30) P=.01 but not an overall improvement in depression (CES-D) [Baseline,
13.2 (SD 11.5), Post 12.4 (SD 1.4), t=.49 (df,32).
What are the best arrangements for such groups?
Previous research (Budman, Simeone, Reilly & Dember, 1994) has shown that for certain
purposes in support and therapeutic groups, the level of similarity among patients enhances both
the rates by which a group becomes a well functioning unit that maximizes the potential for
helping the participants.
To examine this question in our pilot, we composed three of the groups representing a
range of age and years since diagnosis, and three that were maximized to have either age or years
since diagnosis similar among the members. A repeat measure multivariate analysis with type of
group as the independent variable and the severity of PD symptoms as a covariate (to control for
the potential effects of a recent diagnosis and age) was performed. The dependent variables were
CES-D and PDQ39. Table 2 shows the results of this analysis. Part A of Table 2 shows the
overall effects of the pre-post measures as well as the interaction effects of these pre-post
measures and group type (heterogeneous-homogenous). In the two-step linear regression, we
first controlled for symptom severity. Results indicate that there was an overall statistically
significant effect of the interaction between pre-post scores and group type. An examination of
the individual outcome measures indicates that this statistical significance was associated with
the CES-D, and not the PDQ39. An inspection of Part B shows that improvement in depression
occurred for patents in the homogenous groups, and a small increase in depression for those in
the heterogeneous groups. Patients in both types of groups improved in their quality of life
This section is organized around issues and evaluations culled from the exit interviews.
Limited resources of the research group made it impossible to interview all of the participants.
We interviewed a representative sample of 16 participants. Five from both the ND and GPD
groups and six from the YO groups. The exact words of participants’ comments have been
altered to protect their anonymity. Almost all of the patients interviewed had previously been
participants in PD traditional face to face support groups (F2F). We asked them to compare both
experiences. Many members saw the online groups as enabling them to be freer and talk about
topics they considered somewhat taboo or shameful. However, for a minority of the participants,
the absence of faces, voice tones, and body postures appeared to interfere with their ability to use
the chat rooms. Some participants had difficulty with the typing requirements of the OSG. For
example, hand tremors made typing certain letters difficult. A few were concerned about
confidentiality and lacked trust in the group format. The following are examples of comments:
“I think you can get to know each other more in an F2F group, You can see each other, see their
condition, their expressions. It is easier to get acquainted and offer suggestions. If you can't see
them and don't know their condition, it is harder to do that.”
“I had been. There is a monthly Support Group. It’s more educational, larger, less intimate,
wider spectrum of where people are. F2F was just so much larger. It was a totally different.
Like going to class.”
“In an Internet group, you are much freer to talk about things that you probably wouldn't in a
F2F. We got into discussion of sex (meads affecting sexual desire). I know I wouldn't have
discussed in a F2F. The other thing is your more open to talk about symptoms on bodily
functions might be a little more difficult in F2F.”
Many members saw the online groups as enabling them to be freer and talk about topics they
considered somewhat taboo or shameful. The following are examples of comments:
“This was a very powerful group - very expressive and active. I was basically a pretty good
listener but I did not enter into discussion too often.”
Most interviewees felt that they had ample opportunity to discuss their thoughts and feeling in
the group. The following are examples of comments:
“We talked about things that we I cant begin to talk about with my family. People were very
open. Maybe more so because you couldn't see people maybe you say more because you
couldn't see them face to face. Death, dying, sex lots of subjects. It was a surprise. It was good
to be able to talk about them. I would never have done that in the old persons support group.”
“Our group pretty much talked about lots of different things. The group was very interesting,
very intense. I just found that at end the end of the session I was very tired. But I though the
group was very supportive.”
We asked participants if they believed the group helped them change how they coped with their
disease. Many reported that they felt less alone and were more comfortable talking about their
disease. The following are examples of comments:
“It maybe made me more open with people at work and friends because I talk about things in the
support group and freer to talk about things in other parts of my life.”
“I think it gave me a coping mechanism, allowed me to talk about things that were bothering me
that I couldn't' talk with anyone else. It made a difference for me.
It has helped me to be more in the moment rather than focusing on future fears. And focusing on
what I can do rather than what I cannot do.”
CONCLUSIONS AND IMPLICATIONS
This feasibility pilot results suggest that patients with Parkinson’s disease are willing to
participate in professionally directed online support groups. Of course, less than half completed
pre and post measures. Our demographic comparisons to traditional support groups found that
those who participated online were younger and suffered less from depressive symptoms. An
analysis of the no- shows showed that most did not participate because of time conflicts to the
group they were assigned. Our findings do suggest that PD patients will use online groups but
that strategies are required to enhance their retention.
Across all groups, we found a significant improvement in the participants’ quality of life
(PDQ39). Overall, there were no changes in levels of depression (CED). However, we did find a
significant time X group type interaction, with the patients in the homogeneously composed
groups showed a reduced level of depression. We examined the patients for changes in PD
medications during the time they participated in the group to determine if the changes in quality
of life and depression were associated with alterations in their medical management. Of the 32
patients, only 4 (1 from the general groups, 2 from young onset, and 2 from the newly
diagnosed) reported any medication changes.
Online groups can be helpful to many PD patients. The differential between the
heterogeneous and homogenous groups in changes in depression over time suggests that
composing groups to enhance patient similarity is a simple strategy for enhancing the group
experience, seeing themselves as more alike. Previous research27-31 reported that similarity
among participants was an important enhancer of the group’s experience. The fact that only the
homogeneous group participants independently decided to continue the groups by forming their
own chat groups on Yahoo suggests that the homogenous groups were in fact more cohesive ( a
shared sense of belonging)
Limitations of the study. The results of this trial are promising; however, more research
is needed before this support group format can be recommended to people with PD. The findings
reported in this pilot study are limited by several critical methodological compromises. The
absence of a non-treatment control group makes it possible that the participants improved as time
simply passed. We studied a sample of convenience rather than one from a defined population.
It is possible that only those that were likely to improve joined the study. This does not subtract
from the efficacy of the groups for those that choose to use them, but does limit the potential to
generalize. Longer follow-up assessments are needed to determine whether the intervention
effects are maintained. In addition, more detailed information on participants’ medical condition
and treatments (including physician confirmation of the medical diagnosis) should be obtained.
Finally, the attrition rates were high. Ordinarily, the consensus in group therapy is that about
20% drop out after a few meetings. Our rate was 39%, further limiting the possibility of
Our comparisons of the demographics and disease characteristics of those who dropped
out did not prove to be useful in understanding their reasons for termination. Clearly this is an
important area for future research. Why they terminated is an unknown and clearly needs
clarification for future use of online groups for PD patients.
In developing OSGs for PD patients, we understood from the onset, that because of the
disease, typing would likely be a problem for some. Voice recognition software was a possible
solution. However, our Chat software was not compatible with the voice recognition software.
For participants who had difficulty in typing, we used a makeshift solution in the form of a
caretaker who did the typing for the patient. Our experience was mixed. At times the caretaker
inserted themselves into the groups as a participant. The use of an asynchronous group rather
than a chat group has been successful in studies of women with breast cancer. Such a format may
allow some PD patients to more easily type their responses without experiencing time pressure.
Our pilot provided a base that suggests future studies are worthwhile. High on such a list
would be the use of alternative online formats such as asynchronous interactions as well as using
a defined population where a randomized trial could be undertaken.
COMPARISONS OF SURVEY SUPPORT GROUPS AND THOSE RECRUITED FOR THE
Standard . Deviation % showing clinical
levels of depression**
online 60.2 9.2 AGE
survey 72 8.8
online 18.8 10.8 YEARS PD
survey 8.4 7.3
online 13.9 10.8 40% CESD
survey 20.4 8.3 64%
online 191.8 93.2 PDQ39*
survey 252.3 108.2
online 5.6 2.7 TOTAL
survey 6.1 2.7
* Sum of all items. ** CESD scores > 16.
MULTI VARIATE TESTING HETEROGENOUS-HOMOGENOUS GROUP
TIME 3.98 0.03
TIME* PD SYMPTOM SEVERITY 6.77 0.01
TIME* TYPE GROUP 3.54 0.05
UNIVARIATE: TIME* TYPE GROUP
CESD 6.5 0.02
PDQ39 0.6 NS
ADJUSTED MEAN SCORES, CESD AND PDQ39 BY INTERACTION OF TIME AND
OUTCOMES TIME GROUP TYPE MEANS
CESD Baseline HETEROGENOUS 13.1 (SE 3.3)
Post HOMOGENOUS 16.5 (SE2.5)
Baseline HETEROGENOUS 15.2 (SE 2.6)
Post HOMOGENOUS 10.3 (SE 2.0)
PDQ39 Baseline HETEROGENOUS 225.8 (SE 22.6)
Post HOMOGENOUS 200.5 (SE 18.2)
Baseline1 HETEROGENOUS 182.2 (SE 18.1)
Post2 HOMOGENOUS 137.3 (SE 14.6)
* N=28 (11 Heterogenous, 17 Homogeneous) Several cases were omitted because of missing
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