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Subsequent behavior of users of an arthritis information telephone service.

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212
SUBSEQUENT BEHAVIOR OF USERS OF AN
ARTHRITIS INFORMATION TELEPHONE SERVICE
RICHARD MAISIAK, SANDRA KOPLON, and LOUIS W. HECK
Followup telephone interviews were conducted
with a stratified random sample of 305 users of a
prototype telephone information service for arthritis 2-4
months after their initial contact with the service. The
percentage of respondents who reported taking at least 1
positive action for their arthritis because of service
usage was 79%. The most frequently reported actions of
users were asking their doctor more questions and
greater compliance with their doctor’s orders. About
one-half of the respondents felt more in control of their
arthritis because of service usage. Both the taking of at
least 1 action and the taking of certain specific actions
were significantly correlated with feeling more in control
of the arthritis (P < 0.01). Respondents who were less
than 60 years old, black, or symptomatic were significantly more likely to take an action and took significantly more actions (P< 0.01). This minimal intervention may stimulate positive behaviors for individuals
with arthritis.
Arthritis patients face many informational barriers to the control of their disease. Both the general
From the Multipurpose Arthritis Center, Office of Educational Development, Arthritis Information Service, and the Division
of Clinical Immunology and Rheumatology, University of Alabama
School of Medicine, The University of Alabama at Birmingham.
Supported by NIAMD grant P60-AR-20614-11.
Richard Maisiak, PhD, MSPH: Associate Professor, Office
of Educational Development; Sandra Koplon, MA: Coordinator,
Arthritis Information Service; Louis W. Heck, MD: Associate
Professor, Division of Clinical Immunology and Rheumatology.
Address reprint requests to Richard Maisiak, PhD, University of Alabama School of Medicine, The University of Alabama at
Birmingham, CHSB 401, 933 19th Street South. Birmingham, AL
35294.
Submitted for publication April 27, 1989; accepted in revised form September 19, 1989.
Arthritis and Rheumatism, Vol. 33, No. 2 (February 1990)
public and the arthritis patient tend to rely on the
media for information about arthritis. Thus, they may
be confused about the names of the different forms of
arthritis, may be unaware that arthritis can be treated,
and may rely on unproven treatments such as bee
venom and copper bracelets (1-3). Arthritis patients
also tend to forget their doctor’s instructions and
misperceive their treatment plan (4-6). They are also
prone to lasting feelings of helplessness (7), and tend
to be unaware of community resources that are available for the care of arthritis (8-1 1).
Information or education programs about arthritis should help reduce the ignorance and misinformation about arthritis. Although there have been several reports of health promotion programs that provide
information by telephone about other diseases (12-14),
there have been few reports of arthritis information
telephone services. It is only recently that the Arthritis
Foundation has initiated a nationwide telephone service for information about arthritis. A telephone service might be used not only to disseminate the proper
facts about arthritis, but it also might encourage users
to take potentially beneficial actions for their arthritis.
Although such a service would be considered a minimal intervention, it might stimulate some positive
actions, since people who contact such a service may
also be ready to act in other beneficial ways. Emotional support and information provided by telephone
has been shown to enhance the functional status of
patients with osteoarthritis (15).
There have been no published reports of a
formal study on the outcomes of an arthritis information telephone service. The purposes of this study
were to estimate the percentage of users who take
potentially beneficial health actions after contacting an
ARTHRITIS INFORMATION SERVICE USER BEHAVIOR
Table 1. Demographic characteristics of survey respondents, unsampled callers, and the Alabama adult population
Demographic
characteristic
Women, %
Age 260 years, 96
White, 96
High school diploma, %
Symptomatic, 96
1987 state adult
Survey Unsampled
population
respondents callers
220 years old
(n = 305) (n = 117) (n = 2,738,756)
81’
48*
92*
84
40
94
53
79*
81
87
84
56
25
16
-
* P 5 0.05, versus the state adult population 220 years old, by
chi-square test.
arthritis information telephone service, t o identify
which actions were believed to be caused by contacting the service, and to identify the types of users who
were most likely to take such actions. The method of
study was a followup telephone interview conducted
with a random sample of service users.
SUBJECTS AND METHODS
Subjects. The subjects of the followup survey were a
stratified random sample of eligible users of the Arthritis
Information Service (AIS) of Alabama during a 4-month
period. To be eligible for inclusion in the study, a user must
have contacted the service by phone, have resided in Alabama, either have symptoms of arthritis or be a “surrogate,”
i.e., a friend or family member of a symptomatic person, and
have agreed to participate during their initial phone call. The
rate of refusal to participate during the initial contact was
5%. Approximately 90% of the symptomatic persons had
already seen a doctor about their symptoms. The person for
whom a surrogate was calling was called a “referent.” The
initial sample size for the survey was 400,and was stratified
by the month of the call. The nonresponse rate due to the
inability to reach a caller was 20%, and the refusal rate at
followup was 5%. The final sample size for the survey was
305. A description of the sample is presented in ?’able I .
Information service. The Arthritis Information Service of Alabama is a public service program associated with
the University of Alabama at Birmingham Multipurpose
Arthritis Center. The goal of the AIS is to reduce ignorance
and misinformation about arthritis by providing people with
free telephone advice, specific printed materials about arthritis, and a quarterly newsletter. The service operates a
state-wide toll-free telephone line accessible by anyone in
Alabama, as well as a local telephone line used primarily by
local residents and out-of-state callers. Publicity for the
service is targeted primarily to residents of Alabama through
listings in the telephone book and by occasional media
advertising campaigns. The service is staffed by 1 full-time
coordinator, 5-8 specially trained volunteers, 2-3 student
assistants, and a physician adviser. Many callers have simple requests that are easily handled by one of the trained
volunteers. When requests are more complicated, the coor-
213
dinator lends assistance, and when required, a physician is
consulted. The service is available during the daytime hours
on weekdays and maintains an answering machine for offhour calls. The AIS began operation in January 1985 and had
assisted over 13,000 users as of December 31, 1988. The AIS
was used by the Arthritis Foundation as the model for the
first nationwide toll-free telephone service for arthritis that
began operating in March 1989.
Interviewers. The interviewers for the survey were
the AIS coordinator, 5 trained volunteer counselors, and 3
volunteers who were not counselors. All volunteer counselors had undergone a 30-hour training program on counseling
that included training on interviewing callers. The other
volunteers received special training for this survey. All
interviewers were instructed to be nonthreatening and objective with callers, and to encourage honest, frank responses.
Followup procedure. When the user’s initial call was
nearly completed, the users were asked by the phone counselors for basic demographic information, their name and
phone number, and whether they could be called back.
Attempts to call back participating users for followup interviews were made 60-120 days after their initial call. Up to 4
attempts were made over a 7-day period to reach an eligible
caller. Respondents were informed of the nature of the
questions and were asked again if they would participate in
this study. Respondents who refused participation at followup tended to be patients who were experiencing flares of
the arthritis symptoms. For appropriate items, surrogate
callers were asked to describe the actions of the symptomatic persons for whom they were calling.
Questionnaire. The telephone questionnaire was developed over a 3-month period and was tested in a pilot
study. The questionnaire was highly structured, and most of
its items required categorical responses. A list of possible
actions relating to arthritis were developed from a previous
study (16), and from informal discussions with callers and
patients. The questionnaire items were concerned with 17
potentially beneficial health actions that could be taken and
3 other possible outcomes of service usage.
The questionnaire items used for this study were
administered as follows. The participants were told: “The
next series of questions require a yes or no answer. We
would like to know which of the following actions you or the
person you were calling for have taken. Did you or the other
person . . . 1) Go to, or make an appointment with, a
physician you’ve seen before? 2) Ask more questions of a
doctor than you usually do‘? 3) Go into a hospital for
treatment? 4) Go to or make an appointment with a new
physician, clinic, or hospital for the first time concerning
arthritis? 5) See or make an appointment with a rheumatologist? 6) Follow a doctor’s orders better? 7) Take prescribed
medicine more often? 8) See or make an appointment with a
physical or occupational therapist? 9) Contact a community
agency or service? 10) Visit a patient club or meeting? 11)
Decide not to use an unproven remedy? 12) Obtain anything
to make your daily activities easier? 13) Seek additional
information from other sources about your questions? 14)
Share the information received with at least one other
person? 15) Get financial help for your illness? 16) Start an
exercise program? 17) Eat a more balanced diet? 18) Feel
MAISIAK ET AL
214
more in control of your arthritis? 19) Give a donation to an
arthritis organization? 20) Learn the exact name of your type
of arthritis?”
“Now that we’ve identified some of the actions that
you or the other person have taken, let’s identify which
ones, if any, were caused mainly by your contact with the
AIS staff or with the use of AIS literature. I’ll name an action
and you tell me either yes or no, if you think that your
contact with the person with whom you spoke or the
literature used caused you to do it” (interviewer reads
completed actions from the above list).
Statistical analysis. All data were initially recorded on
a standard form and were later entered into a computer
database. All analyses were performed using the SPSSx
software program (17). The level of statistical significance
for all analyses in the study was set at P < 0.01 for 2-tailed
t-tests, except where noted. The number of positive health
actions reportedly taken was computed by counting the
number of positive responses to the 17 action items identified
above. All other data were treated as being dichotomous.
Chi-square tests were used to compare the percentages of
respondents in different groups with positive responses. A
McNemar test was used to compare the percentage of
respondents who reported an action with the percentage of
those who attributed it to service usage. Phi coefficients
were computed to determine the levels of associations
among the various actions.
Table 2. Percentages of respondents who reported taking a positive health action and those who believed it was caused by contacting the information service
Positive
health action
_____
_____~
Better compliance with doctor’s orders
Went to a previously seen physician
Asked the doctor more questions
Started on exercise program
Ate a more balanced diet
Went to a new physician
Went to a rheumatologist
Learned their exact diagnosis
Took medicine more often
Sought more information
Obtained an aid or device
Avoided an unproven remedy
Went to a therapist
Went to a hospital for treatment
Contacted a referred agency
Got financial help for illness
Visited a patient club
Other outcomes
Shared information with others
Felt more in control of arthritis
Donated to an arthritis charity
* P < 0.01 versus
Reported Believed action
actions was caused by
(n = 305) service usage*
49
47
46
36
35
32
32
32
30
21
19
14
12
6
6
4
3
80
35
89
58
69
12
63
50
73
62
63
71
42
67
67
61
50
12
58
26
90
88
38
loo%, by the McNemar test.
RESULTS
The demographic characteristics of the respondents, unsampled callers, and the adult population (220
years old) of Alabama (18) are presented in Table 1.
This information indicates that most of the respondents were older, white, female, had a high school
diploma, and were symptomatic. Chi-square tests indicated no significant demographic differences between the respondents and the unsampled callers with
respect to sex, age, race, education, or type of caller.
The percentages of respondents who were female,
over 60 years of age, white, or had a high school
diploma were significantly greater than the respective
percentages in the state adult population (P < 0.05).
The percentage of respondents who reported
taking various actions concerning arthritis after contacting the AIS and the percentage of respondents who
believed that their action was caused by service usage
are presented in Table 2. The actions taken by the
highest percentage of respondents were better compliance with doctor’s orders, going to a previously seen
physician, and asking the doctor more questions. The
outcome item reported by the highest percentage of
respondents was sharing with others the information
received from the service.
For any action or outcome, the percentage of
respondents who reported an action or outcome that
was caused by service usage was significantly less than
the percentage who reported the action or outcome.
The action with the lowest percentage of respondents
who indicated that it was caused by service usage was
going to a previously seen physician (35%). The action
with the greatest percentage of respondents who believed it was caused by service usage was asking the
doctor more questions (89%). A large majority (>87%)
of the respondents indicated that their sharing of the
service information with others and their feeling more
in control of their arthritis were caused by service
contact.
The actions or outcomes that were reported to
be caused by service contact were subjected to further
statistical analyses. The percentage of respondents
who reported taking actions caused by service usage
were classified by demographic group, as presented in
Table 3. The service-caused actions reported by the
highest percentage of respondents were asking the
doctor more questions and better compliance with
doctor’s orders.
For most actions, the percentages of respond-
N
13
13
13
9
4
2
4
1
1
63
48
9
16
13
12
10
5
4
4
2
2
65
51
10
= surrogate.
24
21
19
18
18
21
24
23
22
21
20
17
* Sympt. = symptomatic; Surro.
t P < 0.01, by chi-square test.
38
37
66
55
13
20
20
14
11
11
7
6
3
4
2
72t
55
9
6
4
7t
3
3
15
19"
187
27
22
26
27
21
22
491
48t
24
25
26
25
24
25
46
42
High school
diploma
57
45
11
1
1
1
4
12
I
4
6
5
21
24
17
15
20
24
65
50
11
15
12
17
25
25
21
21
22
25
41
39
67
57
5
17
10
10
14
3
3
5
2
5
24
17
26
24
17
17
47
40
Yes
NO
140) (n = 228) (n = 59) (n
35
28
=
2 60
Agc, years
2 80
<m
166) (n = 137) (n = 153) (n
41
39
=
< 80
Asked the doctor more questions
Better compliance with doctor's
orders
Ate a more balanced diet
Went to a new physician
Took medicine morc often
Started an cxcrcise program
Went to a rheumatologist
Went to a previously seen
physician
Learned their exact diagnosis
Sought morc information
Obtained an aid or device
Avoided an unproven remedy
Went to a therapist
Went to a hospital for treatmcnt
Contacted a referred agency
Visited a patient club
Got financial help for illness
Other outcomes
Shared information with others
Felt more in control of arthritis
Donated to an arthritis charity
(n
(n = 305)
All rcspondcnts
Followup,
days
Percentage of respondents taking actions reportedly caused by service usage, by dcrnographic group*
Positive health actions
Table 3.
SCX
Caller type
66
49
10
9
4
3
4
It
1
lot
16
14
22
24
20
19t
20
24
40
38
56
72
12
24
12
36
24
16
8
4
12
4
44
20
40
44
28
20
56
56
68
50
11
21
13
Y
18
7
13t
4
2
0
25
30
25
21
30
30
41
43
51
10
64
15
14
12
8
5
2
4
2
2
24
21
22
21
18
21
41
39
67
561
11
18
14
13
.12t
6
4
4
2
1
25
22
24
23
21
22
44
44t
54
32
9
7
12
7
0
4
4
2
2
4
19
26
12
12
19
26
32
21
B
M
F
Sympt.
Surro.
273) (n = 25) (n = 56) (n = 246) (n = 241) (n = 57)
w
=
Race
MAISIAK ET AL
ents who reported taking an action caused by service
usage was higher for those interviewed at a later time
after initial service contact compared with those interviewed at an earlier time, but none of these differences
were statistically significant. The percentages of respondents younger than age 60 who reported taking
the service-caused actions of asking the doctor more
questions, better compliance with the doctor’s orders,
seeking additional information, obtaining an aid or
device, contacting a referred agency, and sharing
received information with others were significantly
greater than the respective percentages of older respondents.
There were no significant differences between
the percentages of respondents with and without a
high school diploma for any service-caused action.
The percentages of black respondents who reported
taking the service-caused actions of starting an exercise program, obtaining an aid or device, and visiting a
patient club or meeting were significantly greater than
the respective percentages of white respondents. The
percentage of men who reported taking the servicecaused action of going into a hospital for treatment
was significantly greater than the respective percentage of women. The percentage of symptomatic individuals who reported taking the service-caused actions
of better compliance with doctor’s orders, deciding
not to use an unproven remedy, and feeling more in
control of their arthritis were significantly greater than
the respective percentages of referents of the surrogate respondents.
Mean number of actions reportedly caused by contacting
the Arthritis Information Service
Table 4.
Factor
Sex
Female
Male
Age
<60 years
260 years
Race
White
Black
High school diploma
Yes
No
Caller type
Symptomatic
Surrogate
Followup period
<80 days
280 days
All respondents
* P < 0.01. by 2-tailed t-test.
Sample
size
Mean
2
SD
246
56
2.63 t 2.41
3.18 rt 2.62
153
140
3.30 t 2.68*
2.13 t 2.02
273
25
2.59 t 2.39
4.40 t 2.66*
228
59
2.78 t 2.48
2.13 t 2.44
24 I
51
2.95 t 2.45’
1.96 t 2.33
166
137
305
2.50 t 2.30
3.01 t 2.60
2.76 2 2.45
Table 5. Phi correlation coefficients showing the levels of association between actions reportedly caused by service usage and
feeling in control of the arthritis
4
Action
Asked the doctor more questions
Better compliance with doctor’s orders
Ate a more balanced diet
Went to a new physician
Took medicine more often
Started an exercise program
Went to a rheumatologist
Went to a previously seen physician
Learned their exact diagnosis
Sought more information
Obtained an aid or device
Avoided an unproven remedy
Went to a therapist
Went to a hospital for treatment
Contacted a referred agency
Visited a patient club
Got financial help for illness
Shared information with others
Donated to an arthritis charity
Took at least 1 action
correlation
0.23*
0.42*
0.30*
0.08
0.29*
0.28*
0.09
0.10
0.23*
0.06
0.20*
0.13
0. I4
0.02
0.09
0.07
0.08
0.25*
0.05
0.43*
* P < 0.01, versus a phi correlation of 0.
The mean number of reported health actions
caused by service usage for each respondent group is
presented in Table 4. The percentage of respondents
who reported taking at least 1 action caused by service
usage was 79%. The mean 2 SD number of actions
taken was 2.76 2 2.45. The mean number of servicecaused actions taken by respondents less than 60 years
old, black respondents, and symptomatic people was
significantly greater than the mean number reportedly
taken by respondents over the age of 60, white respondents, and referents, respectively. The intercorrelations (phi coefficients) among these factors were
relatively low (<O. 13).
The phi correlations between each action reportedly caused by service usage and feeling more in control
of the arthritis are presented in Table 5. The results show
that taking at least 1 action, better compliance with
doctor’s orders, eating a more balanced diet, taking
medicine more often, starting an exercise program,
sharing information, asking the doctor more questions,
learning the exact name of their arthritis, and obtaining
an aid or device were each significantly associated
with feeling more in control of one’s arthritis ( P <
0.01).
DISCUSSION
The sample of survey respondents was representative of all service users during the study period.
ARTHRlTlS INFORMATION SERVICE USER BEHAVIOR
The differences in the demographic profiles of the
service’s users and the adult population of the service
area have been analyzed elsewhere (19). Users were
significantly more likely to be female, older, white,
and more educated than the adult population of the
service area.
The present study was an uncontrolled descriptive study. Without a control group or baseline measures, we cannot be certain which user actions would
have occurred without the intervention of the service.
To provide some methodologic control, the respondents were asked to separate service-caused actions
from other actions. This procedure succeeded to a
certain degree. None of the reported actions were
completely attributed by the respondents to service
usage. There was a wide range of the percentages of
respondents who attributed any one action to service
usage. These results also provide some insight into the
user actions. For example, the low percentage of
respondents who believed that going back to their
previous physician was caused by service usage suggests that many respondents had planned the visit to
their physician prior to contacting the service. The
patients may have used the service to prepare for the
visit or to get over a period of symptom flare.
The present study also relied on self-reporting
by the survey population. Without the use of other
corroborating objective evidence of the actions, it is
not certain if a respondent’s responses were uninfluenced by the perceived expectations of the interviewers. Special instructions to the interviewers and a
highly structured questionnaire were used to minimize
this threat of interviewer demand. The finding that
more actions were reported during the longer followup
period compared with the shorter time period is evidence against interviewer demand. It suggests that the
number of actions taken was related to the amount of
time available for such actions. This result is consistent with a valid effect.
The methods used in the present study may
have led to an overestimation of the value of the
service. The questions regarding the actions were all
worded in a positive manner. The respondents were
not asked about the possible negative consequences of
their interaction with the service. It is possible that
improper advice given by the service or a user’s
confusion about the advice given may have led to
some negative outcomes. We are not aware of any
evidence of negative outcomes, but this possibility is
worthy of further study.
The number and type of actions that were
reportedly caused by contact with the information
217
service suggests that the service may have influenced
some important health behaviors. It is interesting that
the 2 most frequently reported user actions involved
interactions with their physician. The service may
have complemented the efforts of user’s interactions
with their physician. In addition, the service may have
facilitated the efforts of a patient’s physician in the
explanation of a specific treatment regimen. Increased
patient involvement in their treatment programs has
been shown to lead to improved compliance and better
outcomes (2&21). The percentage of respondents who
learned their exact diagnosis is important, because it is
difficult for any arthritis program to assist a patient
without knowing that patient’s specific diagnosis. A
significant number of arthritis patients in a clinical
setting have been shown to be unaware of their exact
diagnosis (10).
Another apparent outcome of service usage was
the feeling of being more in control of the arthritis.
Feelings of helplessness have been shown to be associated with a decline in the health status of arthritis
patients (8). The service was also important for referring symptomatic persons to a proper physician, hospital, or community resource that may otherwise have
eluded them (9-12). Finally, the large percentage of
symptomatic persons who reportedly shared arthritis
information with others indicated that service intervention may have a multiplier effect. More people may
have benefited from the service than those who used
the service directly.
The higher level of subsequent activity of the
younger respondents may be due to their having less
experience with arthritis and the greater likelihood of
being newly diagnosed. The similar levels of activity
for persons with or without a high school degree are
somewhat different from the results of our earlier
research, which indicated that less educated service
users were more likely to be very satisfied with the
service (16). It may be that satisfaction with the
service’s advice was not necessarily followed by immediate actions, or that the actions may have occurred
at a time beyond the followup period. The higher level
of subsequent activity of the black respondents in
comparison with that of the white respondents confirms the results of our earlier research (16). It appears
that this mode of information dissemination is more
influential for this specific demographic group. The
higher percentage of men who entered a hospital for
treatment during the followup pcriod might be due to a
greater reluctance of men to receive treatment unless
specifically encouraged.
The higher level of activity of the symptomatic
MAISIAK ET AL
218
respondents is not surprising, since they had avoided
an obstacle in the chain of communication. The surrogate callers may have failed to convey useful information to the referents and may not have had a positive
influence on them. I n addition, symptomatic individuals who used the service themselves may have been
more motivated to act than the referents of surrogate
users. Support services may need to encourage surrogate callers to have the referents contact the service
directly.
The strong association of feeling more in control of their arthritis with better compliance with their
doctor’s orders suggests that the patients’ feelings of
helplessness were lessened by better compliance with
treatment measures. Increased compliance may be
enhanced by an increased involvement of the patient
with the treatment plan.
The present study has presented positive evidence that a minimal intervention-a telephone information service-can stimulate positive behaviors for
arthritis patients. A large percentage of the service’s
users reported taking at least 1 positive health action
for their arthritis and attributed it to contact with the
service. The actions reported were those that might
benefit both the health status and psychological status
of an arthritis patient.
Although the results of this study are encouraging, they must be qualified for 2 reasons. First, the
counseling methods used in this service may differ
somewhat from those that are used in other health
information services. Special efforts were made to
assess a caller’s needs, to provide sound oral advice,
and to provide printed matter that was relevant to a
caller’s question. Second, the study design was formulated primarily to detect positive outcomes rather than
to be a rigorous test of the intervention. As a result,
further research is warranted using an experimental
design to provide stronger evidence of the effectiveness of this intervention.
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