Microsoft word - ic-pbs.doc

Healthcare for Patients with Interstitial Ming-Huei Lee1,2, Huei-Ching Wu2,3, Jen-Yung Lin4, Yung-Fu Chen3, John Y. Chiang5, Tan-Hsu Tan6 1Dept. of Management Infor. Syst., Central Taiwan University of Science and Technology, Taichung, Taiwan 2Department of Urology, Fong-Yuan Hospital, Department of Health, Executive Yuan, Taichung, Taiwan 3Dept. of Healthcare Administration, Central Taiwan University of Science and Technology, Taichung, Taiwan 4Department of Computer Science and Information Engineering, Da-Yeh University, Changhua, Taiwan 5Department of Computer Science and Engineering, National Sun Yat-sen University, Kaohsiung. Taiwan 6Department of Electrical Engineering, National Taipei University of Technology, Taipei, Taiwan Abstract—Interstitial cystitis (IC) is a chronic disease which
results of RAND interstitial cystitis epidemiology study showed highly degrades the quality of life for patients. The objective of this
that female IC/BPS patients experience much higher level of study is to adopt Internet intervention for caring IC patients to
sexual dysfunction (88% vs 43%), such as lack of sex interest alleviate their pains and bothering syndromes. Healthcare
(64% vs 31%), arousal difficulties (61% vs 19%), and pain education was conducted through Internet by asking the patients,
divided into study and control groups, to check contraindications,
(67% in bladder; 52% in genital area vs 15%), compared to the habits, and behaviors weekly to remind and consolidate important
rules for promoting quality of life (QOL). Questionnaires,
The overall prevalence of IC/BPS is 0.68% in Finland [10], including SF-36, O’Leary-Sant symptom and problem indices, and
2.7-6.5% in the USA [11], and 1.1% for male and 2.4% for VAS pain and urgency scales, were used to evaluate improvements
female in the Swedish population [12]. However, it is likely of quality of life before and after ICT intervention. The results
under-diagnosed and under-estimated according to a study show that the QOL of patients in the study group with ICT
intervention have been significantly improved compared to the
performed recently in the United States [13]. patients in the control group. The E-health system was
IC/BPS patients always suffer from sleep disorder, working demonstrated to be effective in improving QOL of IC patients
limitation, and stress [14]. It was reported that the physical and through intervention of Internet healthcare education for the
mental status of the IC/PBS patients are significantly worse than consolidation of healthy dieting habit and life style.
general population [15], greatly deteriorating their quality of life. Serious isolation from regular social life, unable to work Index Terms—Interstitial Cystitis (IC), Information and
normally, acquisition of depression, or commitment of suicide Communication Technology (ICT), Mobile Phone, E-Health,
Quality of Life.
was also observed in some patients [16,17]. The IC/PBS treatments are very diverse. Currently, there is no single therapy which is effective in treating the disease. Clinically, the patients have been long annoyed by the disease making them suspect to nterstitial cystitis /bladder pain syndrome (IC/BPS) is a further supportive therapies, such as medication prescriptions or Ichronic bladder disease characterized by suprapubic pain other invasive treatments. Most of the patients visit their related to bladder filling, urgency, frequency, and nocturia in physicians to seek only supportive therapies, resulting in the the absence of proven urinary infection or other definable waste of medical resource, deficiency of effective healthcare, pathologic etiology [1]. The cause of the disease is unknown. Whether it is originated from the bladder or other pelvic organs The IC/PBS disease also imposes great economic loading for or is a systematic disease is still not elucidated [2]. Dyspareunia the patients and their country. The cost induced includes direct is also widely observed in female IC/BPS patients with pain as healthcare expenditure, as well as indirect loss caused by the most important finding significantly degrading the quality of unemployment. It was reported that the direct cost in treating the life [3,4]. It is estimated to occur in 49-90% of the IC/BPS IC patients is 2-3 times more than non-IC patients with an patients; among them, 54% intended to avoid intercourse most increase of direct cost of 4000 US$ compared to their of the time because of incurred sex pain [5]. Sex pain is a strong age-matched counterparts [18]. An increase of indirect cost indicator of poor quality of life for IC/BPS patients [6,7]. The caused by unemployment and other social costs was also symptoms may be effective to promote quality of life; (2) although IC is not a malignant disease, treatment of IC patients A. Application of ICT in Health Care needs a lot of healthcare resources and may cause a great burden By taking poor compliance of self-management regimens into for the country; and (3) intervention using mobile phone and consideration, Celler et al. [20] proposed a Home Televare Internet is effective in caring patients with chronic diseases in System to monitoring physiological signs, scheduling and outpatient and ambulatory settings. The objective of this study reminding medication, and healthcare education. It was is as follows: (1) to develop an E-health system by integrating demonstrated to be effective in early identification of adverse mobile phone and Internet for caring IC patients to alleviate events to avoid hospital readmission or to reduce length of stay their pains and symptoms; (2) to effectively care IC patients in hospital. Izquierdo et al. [21] reported that the home through the intervention of a IC/BPS healthcare team consisting telemedicine system applied to transmit blood glucose and of nursing case managers and urologists to improve the quality blood pressure data of elder patients with Type 2 diabetes to a of life of IC/BPS patients. In this study, nursing case managers nurse case manager is effective in identifying and remediating are responsible to communicate with IC/BPS patients through urgent situations. It highly decreased their mortality and short message service (SMS) provided by the mobile phone and morbidity for a patient to adopt videoconference to Internet to elevate healthcare efficiency by directly solving their communicate with a nurse or dietitian for diabetes management complaints or problems through real-time response. In addition, and access website data for education every 4-6 months. healthcare education can be reinforces through Internet by Sehati et al. [22] tested an Internet-based ambulatory patient asking the patients to check food contraindications, daily monitoring system to continuously monitor 8 physiological activities, and living habits weekly to remind and consolidate signs and transmitted to a PDA through either wired link or important rules for promoting quality of life. wireless links (infrared or Bluetooth). The signals were then transmitted to a central server for further processing and for storing in a relational database from the PDA. It demonstrated the feasibility and need of a programmable system for remote In this study, a web service designed for providing health monitoring and advising in clinical setting. Recently, an education and administrating questionnaires were used for integrated wireless system was designed and proposed to health care and health management of IC/BPS patients. The monitor vital signs and locations of unattended patients at information of educational material for IC patients was included emergency department or disaster sites [23]. In this system, in the webpage of the Taiwan Interstitial Cyscitis Association wireless vital signs (ECG and SpO2) monitoring, geo-positioning, signal processing, targeted alerting, and wireless caregiver interface modules were integrated to achieve the objective of caring overcrowded unattended patients. The prototype was demonstrated to be capable of detecting alarms The architecture of the web-based IC/BPS healthcare and which showed vital conditions of unattended patients and their management system (HMS) is shown in Fig. 1. As shown in this locations so that the caregivers could immediately locate the figure, the web service was installed in the web server to respond or communicate with the mobile phone by More recently, a system which used cellular phone based on sending/receiving short messages through Hinet message center. Internet to care obese patients with hypertension for improving The IC/BPS HMS can be linked from the TICA website. The their blood pressure, weight control, and serum lipids [24]. The data flow is illustrated as follow: Client Side Computer ↔ intervention was done by simply asking patients to record their Socket to Air API ↔ Socket to Air Server ↔ Message Center blood pressure and body weight weekly through Internet or by ↔ Mobile Phone. ASP .NET C# was adopted to develop the cellular phone. Additional intervention was to send optimal web service system. The MS IIS7 and MS SQL Express were recommendations to the patients weekly. It was demonstrated used to handle the web server and database management system, that the intervention by sending simple messages through cellular phone and Internet can significantly decrease blood pressure, as well as effectively reduce body weight and waist circumference. The similar intervention was also shown to be effective in decreasing blood glucose levels of obese type 2 diabetes patients [25]. To the best of our knowledge, E-health system has never been applied for caring patients with IC/BPS before. The motivations of this study are summarized as follows: (1) it is impossible to completely cure IC disease currently using a general treatment, an individual case might need different treatment from the others, hence finding methods to alleviate the pains and prostatis within a 3-month period; (9) bladder or ureteral calculi; Table I shows the items used for health education. The (10) active genital herpes; (11) uterine, cervical, vaginal, or patients receiving ICT intervention were asked to check the items weekly. Participants who forget to fill the form will be cyclophosphamide or any type of chemical cystitis; (14) noticed by email or simple mobile phone message. tuberculous cystitis; (15) radiation cystitis; (16) benign or malignant bladder tumors; (17) vaginitis; and (18) age less than 18 years. A total of 80 patients were recruited from the urological clinic WEEKLY CHECK FOR CONSOLIDATING THE BEHAVIOR PROMOTED BY HEALTH of a hospital located in central Taiwan and randomly assigned to Please check “Yes” or “No” based on your experience during the past week. either the study group (N=40) or the control group (N=40). Among them, 7 patients in the study group and 8 in the control Do you drink 1500 c.c. of water or so daily? group were excluded because they failed to fill the Do you eat banana, pine apple, citrus fruit, or other food questionnaires in either pre- or post- test. Only the data of 65 containing a great amount of potassium. Do you drink any beverage which contains alcohol, coffee, patients, 33 in the study group and 32 in the control group, were used for further analysis. In addition to regular treatment, Do you smoke? Have you done mild aerobic exercise, such as yoga, hiking, patients in the study group were asked to self-manage their diets and life styles by responding health education questions weekly Do you wear cozy, loose clothes, and put on underwear so that their compliance in following the suggestions in the If you don’t have pain or sexual intercourse, please check “Unavailable”, provided materials can be checked. This intervention is otherwise check “Yes” or “No” according to your personal experiences. Y N NA expected to be useful for changing and consolidating their I have bathed the whole lower abdomen with warm habitual behavior. In contrast, only routine treatment was water (40oC) more than once a day, each lasting for 15 minutes, or placed a heat pad over the abdomen to administrated to the patients for the patients of the control group. keep it warm to relieve uncomfortable symptom. The study was approved by the IRB of Taichung Hospital, I have tried to relax my body muscles through meditation to decrease the activation of sympathetic Department of Health of Taiwan. Table II compares the nervous system and tension, or used a heat pad to demographic information of the patients in the study and control groups. It can be observed that there is no significant difference I have used lubricant (ointment) to relieve uncomfortable feeling during intercourse. (p>0.05) between two groups with regard to age, marriage, and When feeling uncomfortable during intercourse, I have changed the posture to the top position to maneuver the force exerted and alleviate the feeling of pain. I have washed and cleaned the vulva and keep them COMPARISON OF DEMOGRAPHIC INFORMATION BETWEEN STUDY AND I have bathed the whole abdomen with warm water (40oC) for 20 minutes to decrease the occurrence of pelvic pain. Demographic Information Control (N=32) Study (N=33) p-value C. Subjects and Disease Diagnosis Currently, the diagnosis of IC/BPS disease is still challenging that evidence-based diagnosis of the disease is still insufficient [26]. In this study, the diagnosis was based on the inclusion and exclusion clinical criteria proposed by National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) In this study, information and communication technology guideline [27]. The inclusion clinical diagnosis criteria include (ICT) was adopted as the intervention to elevate healthcare cystoscopic observations, i.e. glomerulations and/or classic quality of IC/BPS patients. The questionnaires, including SF-36 Hunner’s ulcer and symptoms, i.e. bladder pain and/or urinary health survey, visual analogue scales (VAS) for the urgency, in the absence of other bladder diseases. Exclusion measurement of pain and urgency, and O’Leary-Sant symptom clinical diagnosis criteria are as follows: (1) bladder capacity and problem indices, were administrated to measure the patient greater than 350 c.c. on awake cystometry; (2) absence of and perception of health status before (pre-test) and after (post-test) intense urge to void with the bladder filled to 100 c.c. during ICT intervention spanning a period of 2 months. cystometry using a fill rate of 30-100 cc/min; (3) demonstration The questionnaire results of pre- and post-tests were of phasic involuntary bladder contractions on cystometry using compared to observe if any difference in improvement of the fill rate described in number (2); (4) duration of symptoms quality of life between the study and control groups. The less than 9 months; (5) absence of nocturia; (6) symptoms outcome of the ICT intervention was evaluated based on the relieved by antimicrobials, urinary antiseptics, anticholinergics, improvement of the health status of the participating patients. or antispasmodics; (7) frequency of urination while awake of Figure 2 depicts the experimental procedure. As shown in this less than eight times a day; (8) diagnosis of bacterial cystitis or figure, ICT intervention provides health education for R: Weekly Health Education F: Questionnaires F1: SF-36 Survey F2: O’Leary-Sant Symptom and Problem Indices F3: VAS Pain & Urgency Scales consolidating healthy dieting habit and life-style. Since all the applied to compare the improvement of health status and recruited patients are female, the control variables used to symptoms between the study and control groups. SAS was eliminate variations between two groups include demographic adopted as the tool for statistic analysis. information, i.e., age, education, and marriage status. O’Leary-Sant symptom and problem indices and visual analogue scale (VAS) pain and urgency scales were used to Table III compares the SF-36 health survey of the IC/BPS quantify disease severity of the patients. patients between the study and control groups before ICT intervention. It can be found that, except general health, there is no significant difference (p>0.05, unpaired Student’s t-test) for the other 7 items between the two groups. The disease severity IC/BPS patients are very sensitive to diets, such as foods, quantified with O’Leary-Sant indices and VAS scales before drinks, supplements, and spices [28-31]. Hence, to educate the ICT intervention is compared in Table IV. As shown in the table, patients in consuming healthy comestibles and preventing the disease severity presents no significant difference (p>0.05, contraindications is expected to be effective in preventing their Student’s t-test) between patients in two groups. recurrence. A web service was designed to promote healthy diets and life styles for the patients by asking them to check and follow the diets and life styles suggested by the physician. The service can be accessed by the patients after login to the web site COMPARISON OF SF-36 HEALTH SURVEY FOR PATIENTS BETWEEN CONTROL AND STUDY GROUPS BEFORE ICT INTERVENTION of TICA (Taiwan Interstitial Cystitis Association) through an Internet browser. The participating patients were asked to fill the questionnaire of health education once a week to consolidate their concepts of healthy diets and life-styles promoted by the educational materials. We hypothesize that the patients will learn to eat healthy diets and live with healthy life-styles to prevent reoccurrence of IC/BPS outbreaks through repetitive health education. The case manager can also learn the diets and life-styles of individual patients through the web service. If the Note: Unpaired Student’s t-test with *p<0.05. patients forget to check the health educational materials, the system will automatically send messages to remind them. Table I lists the diets and life-styles suggested by the physician in the COMPARISON OF DISEASE SEVERITY BETWEEN STUDY AND CONTROL GROUPS F. Statistic Analysis and Outcome Evaluation Descriptive statistics were used to analyze the demographic information, disease severity, and questionnaires of the recruited patients, while the inferential statistics (student’s t-test) Table V compares the SF-36 health survey conducted after ICT intervention with survey done before ICT intervention It was reported that around 90% of the IC/BPS patients for the patients in the control group. It can be observed that, complain sensitive to diet foods, e.g. citrus fruits, tomatoes, except the social function construct, all the other 7 constructs foods containing vitamin C, drinks, e.g. coffee, tea, demonstrate significant improvement. In contrast, as shown in carbonated and alcoholic beverages, and spicy foods [28,30]. Table VI, all the 8 constructs of the SF-36 survey show Gleason et al. [29] reported that high but lower caffeine intake significant improvement after ICT intervention for the is associated with a moderate increase in the incidence of urgency inconsistence, which is consistent to the finding of Jura et al. [31]. The education materials presented in Table I COMPARISON OF SF-36 HEALTH SURVEY FOR PATIENTS OF CONTROL GROUP intend to remind the patients not to eat food containing a great (N=32) BEFORE AND AFTER ICT INTERVENTION amount of potassium as well as drink containing caffeine. As reported by Lailly et al. [32], a good habit or behavior, such as eating, drinking, or exercising behavior, will be formed in a median time of 66 days ranging from 18 to 254 days for participants with good fits. Hence, the IC participants were asked to check and follow the healthy dietary behavior and life style suggested in the health education form weekly. It is effective to consolidate their healthy behavior to prevent re-occurrence or deterioration of the disease. Note: Student’s pair t-test with *p<0.05 and **p<0.01. In conclusion, the E-health system was demonstrated to be effective in improving QOL of patients with IC/PBS through intervention of Internet healthcare education for the consolidation of healthy dieting habit and life style. COMPARISON OF SF-36 HEALTH SURVEY FOR PATIENTS OF STUDY GROUP (N=33) BEFORE AND AFTER ICT INTERVENTION This study was supported in part by Taichung Hospital under grant no. CTU100-PC-002 and National Science Council of Taiwan under grant no. NSC100-2410-H-166-007-MY3. [1] Nickel JC, Tripp D, Teal V, Propert KJ, Burks D, Foster HE, Hanno P, Note: Student’s pair t-test with *p<0.05 and **p<0.01. Mayer R, Payne CK, Peters KM, Kusek JW,Nyberg LM, Interstitial Cystitis Collaborative Trials Group. Sexual function is a determinant of In Table VII, the improvement of SF-36 survey between poor quality of life for women with treatment refractory interstitial cystitis. the control and study groups is compared. 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