Yonago Acta medica 2002;45:89–93

Relationship Between the Quality of Life in Patients with Intractable
Diseases and the Information Telecommunication ServiceShizuko Tanigaki, Ikuko Miyabayashi and Mihoko Miyawaki
Department of Nursing Care Environment and Mental Health, Shcool of Health Science,
Tottori University, Yonago 683-8503 Japan
This study evaluated the relationship of the quality of life (QOL) of home-care patients
having intractable diseases with motor disabilities and the use of information telecommunication services. The investigation was carried out primarily with a questionnaireand interviewing for those incapable of writing. From the answers, the 171 patientswere divided into high- and low-QOL groups based on the mean (32.5) and the median(33.0) values. Using a 2-by-2 contingency table, the activities of daily living (ADL),
depression score and accessibility of information telecommunication services were compared. Both groups showed significant differences in the QOL, ADL and depression
scores. The study suggested that the QOL of home-care patients with intractable diseases were related to ADL and depression. If ADL and depression are maintained atan adequate level, patients can be engaged in outside activities, receive stimulation andincrease their motivation. In providing information about subjects familiar to patientswith intractable diseases, such sources as the circulating neighborhood newsboard(kairanban), newspapers and mass media are very useful to improve their QOL. Furthermore, devices that support their living should also be developed with regard totheir private likes and dislikes.
Key words: accessibility of information; home-cared patient; intractable disease; quality of life;
Parkinson’s disease

In Japan, measures to improve the quality of life(QOL) of patients with intractable diseases andtheir families have been implemented since1996 (Horiguchi et al., 1996; Nimura et al., 1997;
Yanaka et al., 1997). However, relevant reports
lacked what kind of information patients needand how they want to utilize information telecommunication services. The purpose of thisstudy was to evaluates the relationship between
the QOL of home-cared patients with intractable diseases having motor disabilities and theuse of information telecommunication services.

November, 1998 in Kyoto Osaka and Shiga
Prefectures: 210 patients with intractable diseases having motor disabilities were recruited
through the cooperation of the Kyoto Branch of
the Friendship Association of Parkinson’s Disease. Informed consent for the enrollment in
the study was obtained from all patients.
Methods
The investigation was carried out primarily
with a questionnaire, and interviews were madewhen patients could not fill out the questionnaire. The contents of the questionnaire were:i) demographic information including usage ofhealth care and welfare services, and their accessibility to information telecommunication services; ii) activities of daily living (ADL) assess-

Subjects and Methods
Subjects
This study was conducted between May andAbbreviations: ADL, activities of daily living; QOL, quality of life89

S. Tanigaki et al.

Table 1. Characteristics of subjects studied

Results
Number of subjects
149
Age (year)*64.7 ± 10.1
Male/female ratio
66/83
DiseaseParkinson’s disease96
Ossification of the PLL
14
Malignant rheumatoid arthritis
9
Spinocerebellar degeneration
8Others
22
ADL score*
106.2 ± 27.6
QOL score*
32.5 ± 9.8
Depression score*
12.0 ± 6.1* Mean ± SD.
ADL, activities of daily living; PLL, posterior longitudinal ligament; QOL, quality of life.

Of the 210 patients, 171 patients (81.4%) answered, and adequate answers obtained from 149
subjects were analyzed, consisting of 66 males(44.3%) and 83 females (55.7%) with a mean ageof 64.7 ± 10.1 years (Table 1). Parkinson’s disease was observed in 96 patients (65.7%), andother patients had ossification of the posterior
longitudinal ligament, malignant rheumatoid
arthritis and spinocerebellar degeneration (olivopontocerebellar atrophy).
The mean duration of the diseases was 10.7± 8.5 years. A full ADL score is 126. In thisstudy, the mean ADL score was 10.9 ± 22.9.
The independence level was 69.8%.
Concerning the depression score, level 16 is
considered to be borderline, and the mean in oursubjects was 12.0 ± 6.1. Significant differenceswere observed in the QOL, ADL and depression scores (Table 2).
The mean and median values of the total
QOL scores in the present study were 32.5 and33.0, respectively. Table 3 shows the sourcesof information in which significant differenceswere observed between the high- and low-QOL
groups. The use of a telephone showed thehighest frequency among the sources, followedby the use of the neighborhood newsboard circulated by the local community (kairanban),gardening, hobby-learning activities such as
pottery, practicing sports or pastimes, expert
physicians available in the neighborhood andshopping.
The scores for the use of the telephone,gardening, learning activities and practicing
sports were higher in the high-QOL group as

ed by using the functional independence measure; iii) QOL evaluated by the scale for neurological intractable diseases (Hoshino et al., 1995)
and iv) the severity of depression using the Toho
University Scale (Abe et al., 1972).
The subjects were divided to 2 groups ofhigh and low QOL scores according to the meanand median values of the total QOL score: highand low-QOL groups. The ADL score, depression score and accessibility to information telecommunication services were compared between
the 2 groups.
Statistical analysis
Data of QOL, ADL and depression scores wereexpressed as mean ± SD. For statistical analysis to test differences between groups, a chisquare test with a 2-by-2 contingency table wasused. P values of less than 0.05 were regarded
as statistically significant.

Table 2. Mean QOL, ADL and depression scores compared between high- and low-QOL
groupsGroup

Number ofsubjects

Age(year)

QOL

Score
ADL

SQR

High-QOL
75 [32/43]
65.2
40.1
114.8
13.9
Low-QOL74 [34/40]
64.2
24.8
104.1
9.9
[ ], male/female ratio.
ADL, activities of daily living; QOL, quality of life; SQR, masked depression screening test.

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QOL in patients with intractable diseases
Table 3. Sources of information compared between high- and low-QOL groups
SourceHigh-QOL

Low-QOLP value

Telephone
59 (78.7)
42 (56.8)
0.05
Kairanban*
30 (40.0)
15 (20.3)
0.01
Gardening
29 (38.7)
13 (17.6)
0.005
Hobby-learning activities
18 (24.0)
6 ( 8.1)
0.009
Sport-practicing
13 (17.3)
4 ( 5.4)
0.001( ), percentage.
* Neighborhood notice-circulating system applied in all local communities in Japan.
ADL, activities of daily living; QOL, quality of life.
The 2 groups show significant differences in all sources: examined with chi-square test with a 2-by-2contingency table.

expected, probably reflecting their more positive attitude toward the involvement in activities.
Figure 1 shows the sources of information.
More than 70% of the subjects mentioned
newspapers, followed by government-issued
public relations newsletters and magazines, andnewsletters from general patients aid associations. Figure 2 shows the contents of information that the subjects obtained through these
media: information concerning diseases, healthcare and medicine ranked high as expected.

Discussion
This study suggested that the QOL of homecared patients with intractable diseases is related to ADL and depression. If ADL is maintained at an adequate level, patients can find accessto outside activities, receive stimulation andincrease their motivation. This thought is also
applicable to depression. If depression ismilder, patients may feel better and be inclined
to take some action. Therefore, in maintaining

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TVFig. 1. Sources of information for patients with intractable diseases under home care: circular notices mean
the kairanban, the circulating neighborhood newsboard present in all local communities in Japan; aid
newsletter, newsletters from general patient aid associations in local districts.

91

S. Tanigaki et al.

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shdiFig. 2. Contents of information the patients liked or felt interested in.

Parkinson’s disease without further development of devices for supporting their living.
Therefore, some devices should be developed
also in combination with private wishes of patients.
In conclusion, i) the high-QOL group showed higher ADL scores and lower symptoms ofdepression than the low-QOL group; ii) the
high-QOL group showed more frequent utilization of the telephone and involvement inlearning hobbies and practicing sports; iii) the
high-QOL group used as an information source
the kairanban, the circulating neighborhood
newsboard, much more frequently; and iv) the
high-QOL group got information regarding
hobby, travel and shopping more than the lowQOL group. Our findings showed that information offered to patients with intractable diseases
under home care improved their QOL, and that
information offered by the telecommunication
system will play an important role in the near
future. In order to improve the QOL in patientswith intractable diseases, adequate informationon telecommunication services seemed to bevital.

ADL, some intervention must be devised ormeasures to assist them should be improved.
Using appropriate measures may improve
the living environment and increase assistancein living. Emotional support should be considered in the early stage for depressed individuals. It is also important to plan mental healthcare around some key persons.
Inadequacy of the contents of information
also affects QOL: lack of information leads tolack of interaction, and refusal of communication deteriorates QOL. The kairanban (circulating neighborhood newsboard), an importantsource of information for home-care patientswith intractable diseases, provides information
concerning activities in the local communityand organizations useful for patients’ living(Asahi et al., 1998). So, it makes sense to provide information concerning matters and subjects familiar to patients with intractable diseases by means of the kairanban as well as
newspapers. Moreover, distribution of information through mass media as well as more effective use of the kairanban must be consideredin the future.
The use of such media may become restricted for patients with progressive diseases such as92

QOL in patients with intractable diseases
4 Hoshino A, Shinozaki I, Niino S, Fujita T,
Minowa M. Development of criteria in assessing
the quality of life for intractable neurologicalpatients. Nippon Koshu Eisei Zasshi 1995;42:
1069–1082 (in Japanese).
5 Niimura K, Kinugasa A, Koshio S, Fukuda M,Iuri T, Tanigaki S, et al. [Quality of life (QOL)
and perception of illness in home-treated patientswith intractable neurological disease.] In:
Koseisho Tokutei Shikkan “Tokutei Shikkan Ni
Kansuru QOL” Kenkyuhan, ed. Hirose K, chairman. Kenkyu Hokoku, Heisei 9 nendo. 1998. p.
106–116 (in Japanese).
6 Yanaka S. [Home treatment for patients withintractable neurological disease.] In: Nippon
Kango Kyokai [Japan Nursing Society], ed. Proceedings of the 27th meeting of the JapaneseNursing Society, “Chiiki Kango”; 1996 Oct 2425; Hofu, Japan. Tokyo: Nippon Kango Kyokai;
1996. p. 38–45.

References
1 Abe T, Tsutsui M, Namba T, Nishida K, Nozawa
A, Kato G, et al. Studies on he self-rating questionnaire for the screen test of masked depression(SRQ-D). Seishin Shintai Igaku 1972;12:243–247 (in Japanese with English abstract).
2 Asahi T, Yoshiyama H, Asahina M, Arai K,Imamura M, Sueyoshi F, et al. [Trial use ofvideophone in treating intractable neurologicaldisease.] In: Koseisho Tokutei Shikkan “TokuteiShikkan Ni Kansuru QOL” Kenkyuhan, ed.
Fukuhara N, chairman. Han Kaigi program,Heisei 9 nendo [1998 program for conference ofthe study group]; 1999 Jan 24; Tokyo. Okata-cho(Niigata, Japan): the study group; 1999. p. 34 (inJapanese).
3 Horikawa Y, Eguchi I, Enatsu K, Aoike I,
Hashiba M, Suzuki Y. [An experimental computerized system of medical information for hometreated patients with itractable disease.] In:
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Received August 9, 2002; accepted August 30, 2002
Corresponding author: Shizuko Tanigaki

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