Patient Self-help Groups Research Articles

Self Determination, Decision Making and Social Functioning as a Prognostic Factor among Hepatitis ‘B’ and ‘C’ Patients

Background: Viral hepatitis, encompassing hepatitis B and C, remains a significant public health challenge globally, with a vast majority of those affected unaware of their infection status. The societal stigma and lack of awareness about these diseases impede early diagnosis and effective management, particularly in developing regions. Patient self-help groups and public health initiatives play a critical role in bridging the knowledge gap and facilitating access to care. Objective: This study aimed to evaluate the impact of patient self-help groups in Punjab, Pakistan, on raising awareness and enhancing the management of hepatitis B and C. It sought to assess the effectiveness of awareness campaigns and the role of healthcare professionals in disease identification and management. Methods: A mixed-methods approach was employed, incorporating both qualitative and quantitative data collection through surveys distributed among 150 participants, including 102 males and 48 females from rural and urban areas. The survey consisted of three parts: an evaluation of patient self-help groups, liver disease awareness campaigns, and public health initiatives' commitment against viral hepatitis. Data analysis was performed using SPSS version 25, focusing on the correlation between demographic variables, awareness levels, and the impact of educational campaigns. Results: The findings revealed a significant correlation between awareness levels and participation in self-help groups (r=.564, p<.000). Urban participants showed slightly lower awareness scores (Mean=81.69, SD=14.00 for Total1; Mean=121.81, SD=19.52 for Total2) compared to rural participants (Mean=82.27, SD=12.10 for Total1; Mean=125.75, SD=17.73 for Total2). Gender analysis indicated higher awareness among females (Mean=83.56, SD=13.65 for Total1; Mean=125.60, SD=19.21 for Total2) than males (Mean=81.42, SD=12.11 for Total1; Mean=124.20, SD=17.89 for Total2). Despite the efforts of patient groups, a gap in healthcare professionals' knowledge about viral hepatitis was noted, with no specialized training programs available for general practitioners. Conclusion: The study underscores the crucial role of patient self-help groups and targeted awareness campaigns in improving the management and awareness of hepatitis B and C in Punjab. However, the lack of knowledge among healthcare professionals about viral hepatitis highlights the need for comprehensive training programs. Enhancing public health strategies and educational initiatives could significantly contribute to early disease detection and management, reducing the burden of viral hepatitis.

A Nationwide Survey on Patient Empowerment in Pediatric Inflammatory Bowel Disease in Germany.

The incidence/prevalence of pediatric inflammatory bowel disease (IBD) is increasing. IBD places a significant burden on young patients during important developmental stages and affects their families. Children and adolescents with IBD require increased support from health care services. However, little is known about the additional support needed and how to provide it. Therefore, a large survey was conducted with a focus on patient empowerment. For the anonymous survey, called CEDNA, a patient questionnaire for adolescents with IBD and a questionnaire for parents of children and adolescents with IBD were made available throughout Germany (distributed n = 2810). Questions covered various aspects of coping with the disease, utilization of care, use and need of information and communication services, and how information should be provided. From October 2021 to April 2022, 1158 (n = 708 parents (61.1%), n = 450 patients (38.9%)) questionnaires were completed. The results show a deficit in pediatric IBD care and revealed a large gap in knowledge about core IBD topics (e.g., 74.8% of patients feel poorly informed about transition, 62.4% know little about patient organizations and self-help groups, and 54.7% have little information about preventive health measures), indicating a low level of health literacy among affected children and adolescents. Pediatric IBD poses significant challenges for patients, their families, and healthcare teams. By empowering patients and families, and providing targeted information and communication tailored to the age of the child or adolescent and the needs of the parents, care can be improved and better adapted to the needs of patients. Actions would include providing quality information online through scientific societies and patient organizations and facilitating self-management in adolescents.

Development and pilot testing of novel game-based respiratory rehabilitation exercise devices for patients with tetraplegia.

BACKGROUND: Individuals with spinal cord injuries (SCI) show restricted breathing patterns with reduced lung volumes and capacities.OBJECTIVE: To improve breathing in such individuals, we aimed to develop breathing exercise devices using a user-centered design (UCD) and then assess the effects of these devices on breathing.METHODS: Patients with SCI were involved in the device development. Preliminary online survey participants were recruited from the community, and interview and pilot test participants were recruited from a patient self-help group. The four UCD phases were repeatedly performed. Users required fun, easy, multi-player, and safe exercise devices.RESULTS: Seven breathing exercise devices were developed, and 10 different game-based exercises were performed. Two individuals participated in a pilot test involving a respiratory rehabilitation exercise program conducted twice weekly for 60 min/session over 8 weeks. Lung function was assessed using a spirometer. Forced vital capacity, forced expiratory volume in 1 s, and vital capacity showed minimal changes, whereas maximum inspiratory and expiratory pressures improved. Participants reported that the exercises were entertaining and that the competitive nature of the game-like exercises encouraged further participation.CONCLUSION: Breathing exercise programs using our developed devices can improve breathing and positively affect the psychological states and sociability of users.

Assessment of Self-Efficacy as a Way to Help Identify Cancer Patients Who Might Benefit from Self-Help Group Attendance?

Participating in patient self-help groups is highly recommended to patients in cancer care. Yet, engagement is relatively rare. A total of 253 patients participated in our study conducted as a paper-and-pencil questionnaire. A binominal logistic regression, with interest in participation in self-help groups being the dependent variable, was run. General interest in self-help was high among the respondents. Female gender, higher age, higher education and low self-efficacy were found to significantly predict interest in self-help. Patients reported a lack of information provided by medical professionals. Self-efficacy as a predictor might contribute to characterizing patients who might benefit from self-help group participation.

Orthotopic liver transplantation for patients with end-stage alcohol-related liver disease and severe acute alcohol-related hepatitis: a concise review

Worldwide, cirrhosis due to alcohol-related liver disease (ALD) is responsible for 0.9% of global deaths and 47.9% of cirrhosis-related deaths. End-stage ALD (ESALD) is the final condition of alcohol-related cirrhosis, and severe acute alcohol-related hepatitis (SAAH) is a distinct clinical syndrome associated with the consumption of large amounts of alcohol. In some cases, ESALD, and SAAH may need liver transplantation (LT). The severity of ESALD can improve after a few months (three months) of abstinence from alcohol, avoiding or delaying the need for LT. Conversely, patients with ESALD with a poor prognosis (MELD≥15) may be candidates for LT after three months of abstinence; in these patients, the 6 months rule needs to be revised. In addition, in non-responders to steroid therapy, the indication for early LT in patients with SAAH and acute on chronic liver failure (ACLF) due to alcohol use find indication in carefully selected patients (those with good insight into their alcohol problems and good social support). Thus, the role of a multi-disciplinary team of experts in the management of alcohol use disorder, ESALD and SAAH working in the same institution, the support of the patient's family and self-help groups represent a crucial approach in the reinforcement of motivation to abstain from alcohol, and in helping patients to avoid relapses in heavy drinking when entered in an LT programme.

Формирование субъектной позиции у пациента через практики его включения в этическую экспертизу медицинских случаев

The development of new biomedical technologies has contributed to changing, blurring the boundaries between the norm and pathology of a human being. It is about a gap in the notions of norm and pathology, illness and treatment that are accepted in scientific communities. As a framework of the emerging humanistic scientific paradigm the principles of a subject-oriented approach to the patient are being developed, aimed at maintaining the patient's control over the recovery process, at developing his/her subject position, which implies his/her active and responsible participation in the treatment process and in medical decision-making. Formation of the considered approach in medical institutions is connected with the development of new institutions and practices. The author shows that the procedural model of the institute of medical cases ethical expertise is aimed at developing a subject-oriented approach in clinical practice. At the same time, the patient, as a participant of ethical expertise, acquires the experience of reflexive reasoning and, thus, enabling the possibility and capability for a patient to be involved in the process of treatment management on a new basis. The article presents some results of the author's study of the procedural model of ethical expertise in German medical settings in the context of describing the main gaps and problems associated with the implementation of the subject-oriented approach. The research was conducted using the methods of semi- formalized interview, substantial analysis of research and methodological literature. As the study has shown, the main problems of the subject-oriented approach implementation in the practice of ethical expertise are related to the trends of bureaucratization and commercialization of this practice in the hospital environment. It seems that the issue of developing an appropriate language ensuring equal participation of the subjects of the expertise is important. Prospects for humanization of this practice are seen to be connected with the inclusion of representatives of patient communities and self-help groups of patients in this practice.

Update of French society for rheumatology recommendations for managing rheumatoid arthritis.

The 2014 French Society for Rheumatology (Société Française de Rheumatologie, SFR) recommendations about the management of rheumatoid arthritis (RA) have been updated by a task force composed of 12 expert rheumatologists, 2 patient self-help group representatives, and an occupational therapist. The material used by the task force included recent EULAR recommendations, a systematic literature review, and expert opinion. Four general principles and 15 recommendations were developed. The general principles emphasize the need for shared decision-making between the rheumatologist and the patient and for a global management program including both pharmacological and non-pharmacological treatments. The recommendations deal with the diagnostic strategy for RA, treatment targets, management organization, drug selection based on the treatment line and prognostic factors, management of remissions, and global patient management. Disease-modifying anti-rheumatic drug (DMARD) therapy should be started as early as possible. Validated composite scores should be determined at regular intervals to assess disease activity - according to the tight disease control concept - to achieve the treatment target, i.e., a remission. Methotrexate is the recommended first-line DMARD. The treatment should be optimized when methotrexate is poorly tolerated or inadequately effective. While waiting for conventional synthetic DMARDs to take effect, glucocorticoid therapy can be used, for a brief period to keep the cumulative dose low. When a sustained remission without structural progression is achieved in a patient who is not taking glucocorticoid therapy, targeted therapy de-escalation according to tight disease control principles should be considered. Patients should be periodically screened for comorbidities and their risk factors, which should be evaluated and treated.

Rare diseases in dentistry and oral medicine : Report on the 2017 first national congress

On November25, the first national congress for rare diseases in dentistry and oral medicine under the auspices of ACHSE e. V. and Orphanet was held in Muenster. With speakers from the field of medicine, dentistry, politics, patient advocacy groups, self-help groups and persons concerned, aplatform for exchange between physicians and patients on an equal footing was offered to the participants. At the end of each of the 12lectures, more than 300 national and international guests discussed the various issues and perspectives related to the topic of rare diseases in dentistry and oral medicine. Besides the different presentations focusing on dentistry, neuropediatrics, and human genetics, the existing centers for rare diseases, sources of information, European reference networks, and the national action plan for people with rare diseases were the subjects of intensive discussion. The patient perspective was also considered. From now on the congress shall be held in Muenster biennially.

Treating nonsuicidal self-injury (NSSI) in adolescents: consensus based German guidelines.

BackgroundNonsuicidal self-injury (NSSI) is a frequent and clinically relevant phenomenon in adolescence. Within Europe, Germany has one of the highest prevalence rates in youth with lifetime prevalence ranging between 25 and 35%. However, treatment guidelines for NSSI are not yet available.MethodsConsensus based clinical guidelines were created by a working group consisting of members of eleven medical, psychological or psychotherapeutic professional national associations, and two members of patient self-help and prevention groups. The guidelines were developed in consecutive expert meetings and literature searches and agreed on in a final consensus conference.ResultsGiven that evidence on both the psychotherapeutic and psychopharmacological treatment of NSSI is limited, a consensus based approach was chosen. The consensus indicated that due to the accumulating evidence on the efficacy of psychotherapeutic approaches, core elements of psychotherapy should be provided in treatment of NSSI. A specific psychopharmacological therapy of NSSI cannot be recommended. In addition, the guidelines provide recommendations for surgical intervention of NSSI.ConclusionsIn accordance with the heterogeneous level of evidence, recommendations for the clinical management of NSSI in adolescence were made during a consensus conference after reviewing available literature. There is still a lack of knowledge on prevention as well as clinical interventions, which needs to be addressed by further clinically relevant studies.Electronic supplementary materialThe online version of this article (doi:10.1186/s13034-016-0134-3) contains supplementary material, which is available to authorized users.

The Diagnosis, Treatment, and Follow-up of Renal Cell Carcinoma.

In 2014, 15 500 persons in Germany were given the diagnosis of renal cell carcinoma. This disease is the third most common cancer of the urogenital system. The mean age at diagnosis is 68 years in men and 71 in men. Pertinent publications up to 2014 were retrieved by a systematic literature search and reviewed in a moderated, formalized consensus process. Key questions were generated and answered by the adaptation of existing international guidelines, on the basis of an independent literature review, and by expert consensus. Representatives of 30 medical specialty societies, patient self-help groups, and other organizations participated in the process. The search for guidelines yielded 80 hits, 23 of which were judged by DELBI to be potentially relevant; 7 were chosen for adaptation. Smoking, obesity, and hypertension increase the risk of renal cell carcinoma. Its 5-year survival rate is 75% for men and 77% for women. Renal cell carcinoma accounts for 2.6% of all deaths from cancer in men and 2.1% in women. Nephrectomy and partial nephrectomy are the standard treatments. Locally confined tumors in clinical stage T1 should be treated with kidney-preserving surgery. Minimally invasive surgery is often possible as long as the surgeon has the requisite experience. For patients with metastases, overall and progression-free survival can be prolonged with VEGF and mTOR inhibitors. The resection or irradiation of metastases can be a useful palliative treatment for patients with brain metastases or osseous metastases that are painful or increase the risk of fracture. Minimally invasive surgery and new systemic drugs have expanded the therapeutic options for patients with renal cell carcinoma. The search for new predictive and prognostic markers is now in progress.

Imprisoned in the Cultural Stereotypes of Overactive Bladder: Cultural Meanings of Disease and Sick Role Adaptation in Hong Kong.

Diseases often carry cultural meanings and metaphors, and these meanings can influence illness experiences and behavioral responses. This research investigated how old cultural stereotypes and new social understandings of overactive bladder (OAB) intertwined to influence sick role adaptation and behavioral responses among those with OAB. A qualitative approach using in-depth individual, semistructured interviews was adopted. Thirty patients having OAB were purposively sampled from a patient self-help group for people with OAB. The cultural stereotypes about OAB-as an "old people" disease, as a hopeless disease without cure, as a sexually related disease, and as a disease of substance use-had significant impact on the social and illness experiences of participants, leading to difficulty in adapting to their sick role, indicated by behavioral responses of denial, concealment, resignation, and self-seclusion. Cultural stereotypes of OAB significantly influenced sick role adaptation, which affected illness experiences of persons with OAB. These cultural stereotypes were associated with behavioral responses that led to difficulties in coping with OAB.

Examining the psychometric properties of the Chinese Post-Traumatic Growth Inventory for patients suffering from chronic diseases

This study examined the psychometric properties of the Chinese Post-Traumatic Growth Inventory among Hong Kong chronic disease patients. Using a cross-sectional design and multistage stratification sampling, 265 chronic disease patients were recruited from a selection of non-governmental organizations and patient self-help groups across Hong Kong. The Chinese Post-Traumatic Growth Inventory total scale and subscales showed satisfactory internal consistency, reliability and concurrent validity. The factor structure of the Chinese Post-Traumatic Growth Inventory fit well with a higher-order intrapersonal factor (self, spiritual and life orientation) and a first-order interpersonal factor. The Chinese Post-Traumatic Growth Inventory was predictive of hope and positive coping but negatively predictive of anxiety. The five Chinese Post-Traumatic Growth Inventory subscales can help practitioners identify meaningful health outcomes for Chinese chronic disease patients.

Communicating under medical patriarchy: gendered doctor-patient communication between female patients with overactive bladder and male urologists in Hong Kong.

BackgroundGender differences between patients and doctors markedly influence the quality of communication in treatment processes. Previous studies have shown that communication between patients and doctors of the same gender is usually more satisfactory, particularly for female patients. However, in Hong Kong, where urology is a male-dominated specialty, female patients typically require medical care from male doctors for diseases such as overactive bladder (OAB). The literature about gender-related doctor-patient communication predominantly involves people in non-Chinese communities, with few studies conducted with Chinese populations. However, the differences between Western and Chinese cultures are expected to result in different treatment and communication experiences. Furthermore, OAB has received little attention in many Chinese communities; few studies in the literature address the communication quality between OAB patients and their urologists in Chinese communities, particularly regarding female OAB patients’ experiences when seeking treatment from male urologists. This study, therefore, investigated the doctor-patient communication between female OAB patients and male urologists in Hong Kong.MethodsThis study adopted a qualitative research approach by conducting semistructured interviews with 30 female OAB patients on an individual basis from April 2012 to July 2012. The participants were purposively sampled from a patient self-help group for OAB patients in Hong Kong.ResultsThe participants’ communication experiences with male urologists were unpleasant. Embarrassment, feelings of not being treated seriously, not being understood, and not being given the autonomy to choose treatment approaches prevailed among the participants. Furthermore, the perceived lack of empathy from their urologists made the participants’ communication experiences unpleasant.ConclusionsThe gender and power differential between the participants and their urologists, which was contributed by the social and cultural values of patriarchy and doctors’ dominance in Hong Kong, made the participants’ communication with the urologists unpleasant and difficult. Poor doctor-patient communication can endanger patients’ treatment compliance and thus the treatment outcome. Although altering such social and cultural values would be difficult, providing complementary chronic care services, such as nurse-led clinics as well as support and sharing from patient self-help groups, might be a possible solution.

A pilot evaluation of Arthritis Self-Management Program by lay leaders in patients with chronic inflammatory arthritis in Hong Kong.

The objectives of this paper are to evaluate the efficacy of a community-based lay-led Arthritis Self-Management Program (ASMP) among patients with chronic inflammatory arthritis and evaluate the effectiveness of "shared care collaboration" between hospital and community. We trained 17 lay leaders and recruited patients with chronic inflammatory arthritis via a new shared-care model between hospital rheumatology centers and community organizations. Participants were allocated to interventional group or a wait list control group. Evaluations were completed before, after (6weeks), and 3months after ASMP. We performed analysis of covariance with adjustment with age, sex, marital status, education, employment, duration of illness, and disability at baseline. A total of 65 participants and 32 controls completed the study. The mean (SD) age and duration of illness were 52.0 (11.4) and 5.6 (7.3) years, 90.7% were female, 80.4% had rheumatoid arthritis; 25.8, 53.6, and 12.4% referrals were from hospitals, community organizations, and patient self-help groups, respectively. The interventional group had significantly less pain (p = 0.049 at 6weeks), used more cognitive coping methods (p = 0.008 at 6weeks, p = 0.041 at 3months) and practiced more aerobic exercise (p = 0.049 at 6weeks, p = 0.008 at 3months) after adjustment of covariance. The interventional group had a trend of improvement in self-efficacy, fatigue, self-rated health, and health distress. A community-based lay-led ASMP showed positive beneficial effects on participants with chronic inflammatory arthritis. Shared-care collaboration between hospitals, community organizations, and patient self-help groups was demonstrated.

P18.01 * COMPLEMENTARY THERAPY USE IN A COHORT OF SWISS GLIOMA PATIENTS

Within a short time from diagnosis glioma patients usually become aware that the tumor is incurable and that conventional therapies have only limited success. Therefore it is not uncommon that these patients seek second opinions or contact patient self-help groups. Moreover, it is common that patients seek for other treatments themselves, as an adjunct or alternative to conventional therapies. We here describe complementary therapy (CT) use in a cohort of glioma patients treated at three neuro-oncology centers in Switzerland. A previously developed questionnaire from the German Glioma Network was adapted for Swiss conditions and distributed consecutively in the outpatient clinics. We retrieved questionnaires from 139 patients with gliomas of WHO grades II to IV. Fifty-one percent of the participants reported the use of CT. The main motivation for the use of CT was to actively participate in the fight against the disease. However, only a minority of patients using CT was counselled and accompanied by a physician for this treatment. Regarding reimbursement, health insurances in Switzerland are obliged to cover the costs of some defined CT. However, reimbursement was crucial for only 30 percent of the patients in the decision for CT use. CT usage in glioma patients is more frequent in this Swiss cohort (51 %) compared to a cohort from the German Glioma Network (40 %) and probably heavily underestimated in general. Patients often use sources for information and therapeutics outside neuro-oncology centers and outside medical competence. Physicians involved in the treatment of glioma patients should be aware of self-treatments in addition to standard of care.

Impaired Executive Function Can Predict Recurrent Falls in Parkinson's Disease

ObjectiveTo examine whether impairment in executive function independently predicts recurrent falls in people with Parkinson's disease (PD). DesignProspective cohort study. SettingUniversity motor control research laboratory. ParticipantsA convenience sample of community-dwelling people with PD (N=144) was recruited from a patient self-help group and movement disorders clinics. InterventionsNot applicable. Main Outcome MeasuresExecutive function was assessed with the Mattis Dementia Rating Scale Initiation/Perseveration (MDRS-IP) subtest, and fear of falling (FoF) with the Activities-specific Balance Confidence (ABC) Scale. All participants were followed up for 12 months to record the number of monthly fall events. ResultsForty-two people with PD had at least 2 falls during the follow-up period and were classified as recurrent fallers. After accounting for demographic variables and fall history (P=.001), multiple logistic regression analysis showed that the ABC scores (P=.014) and MDRS-IP scores (P=.006) were significantly associated with future recurrent falls among people with PD. The overall accuracy of the prediction was 85.9%. With the use of the significant predictors identified in multiple logistic regression analysis, a prediction model determined by the logistic function was generated: Z = 1.544 + .378 (fall history) − .045 (ABC) − .145 (MDRS-IP). ConclusionsImpaired executive function is a significant predictor of future recurrent falls in people with PD. Participants with executive dysfunction and greater FoF at baseline had a significantly greater risk of sustaining a recurrent fall within the subsequent 12 months.

THU0570 A Pilot Evaluation of Arthritis Self-Management Program by Lay Leaders in Patients with Chronic Inflammatory Arthritis in Hong Kong

BackgroundHealthcare system has been shifting towards a partnership model of care.ObjectivesTo evaluate the 6-week community based lay-led Arthritis Self-Management Program (ASMP) among patients with chronic inflammatory arthritis in Hong Kong,...

Participation in patient support groups among cancer survivors: do psychosocial and medical factors have an impact?

A better understanding of the role of psychosocial resources and factors associated with participating in patient support groups appears to be important for the development and implementation of cancer survivorship care plans. We therefore investigated the frequency of participation in and satisfaction with patient support groups after completion of a rehabilitation programme and aimed to examine differences in demographic, medical and psychosocial characteristics between group participants and non-participants. We further aimed to identify predictors of participation in patient support groups. A total of 1281 eligible patients (75.5% participation rate) were recruited on average 11 months post diagnosis and assessed at the beginning (t1 ), at the end (t2 ) and 12 months after rehabilitation (t3 ). Study participants completed self-report measures assessing support-group participation and satisfaction, psychosocial distress (anxiety, fear of cancer recurrence, depression), social support, coping, quality of life, pain and treatment-related characteristics. Sixty-seven patients (7.6%) participated in a patient self-help group. Being unemployed, undergoing an increased number of overall treatments, and a higher active emotion-oriented coping style significantly predicted self-help group participation; the predictive power of the multivariate logistic regression model was rather weak (Nagelkerke's R(2) = 0.07). Our data provide evidence that self-help group participation in cancer patients may be largely related to other factors than medical or psychosocial distress.

Attitudes towards cross-border reproductive care among infertile Japanese patients

The attitudes towards cross-border reproductive care (CBRC) held by infertile Japanese patients have not been explored. The objective of the present study was to examine interest levels, preferred destinations, motivations, and sources of information related to CBRC. Our findings provide a general outline of CBRC and the future of reproduction and assisted reproductive technology (ART) in Japan. The study used a cross-sectional design. Data were collected from 2,007 infertile Japanese patients from 65 accredited ART clinics in Japan (response rate, 27.4%) via anonymous questionnaires. Most of the infertile Japanese patients who responded denied using CBRC. However, by group, 171 (8.5%) patients in non-donor in vitro fertilization, 150 (7.5%) in egg donation, 145 (7.2%) in pre-implantation genetic diagnosis, and 129 (6.4%) in surrogacy said that, depending on the situation, they might travel abroad in the future. Older respondents were more likely to express an intention to travel overseas for egg donation in the future. The most popular destination for CBRC was the United States. Popular reasons for interest in CBRC among those considering or planning using this approach to third-party reproduction were that egg donation or surrogacy was unavailable or that obtaining ethical approval takes too long in Japan, whereas these processes are legal and affordable overseas. However, high cost was the most common reason for hesitancy regarding CBRC. Among the participants who were considering or planning to travel abroad for this purpose, TV, medical agencies, print media, and message boards on websites were popular sources of information, whereas doctors, friends, and patient self-help groups were not. Although CBRC among infertile Japanese patients is not at present common, the demand for and use of this approach may increase in the future in the context of the increasingly aging population. Lack of regulation and unavailability of third-party reproduction is a major cause of CBRC among Japanese patients. Health care provider faces an urgent need for giving useful information for patients regarding CBRC.

Satisfaction with health status among cyber patients: testing a mediation model of electronic coping support

There has been a growing interest among researchers about the Internet-based social support. However, not much is known about whether electronic support is associated with subjectively reported patient health outcomes. This study examines variation in satisfaction with physical health status among users of self-help groups for patients with cancer (N = 350). The analytical approach of the study differs from previous work in that satisfaction with physical health is modelled not as a predictor, but as an outcome variable. The study tested the hypothesis that perceived ability to cope with cancer mediates the association between electronic support and health satisfaction. Path analyses using ordinary least squares multiple regressions showed that there is an indirect association between electronic support and health satisfaction via perceived ability to cope with cancer. Electronic support increased perception of control over cancer, which in turn led to higher levels of satisfaction with health status. External health locus of control was associated with greater benefits derived from electronic support. This article concludes that the evaluation of physical health status includes not only clinical indicators but also subjective assessment of coping ability. Thus, the cyber social context in which health perceptions are developed has important medical implications for patient outcomes.