Adherence as a predictor of dropout in Internet-based guided self-help for adults with binge-eating disorder and overweight or obesity.

OBJECTIVE: Internet-based guided self-help (GSH-I) is an efficacious treatment for adults with binge-eating disorder (BED) and overweight or obesity. Although broadly accessible, high dropout from GSH-I has been reported. However, little is known about the factors explaining dropout from GSH-I, including patients' adherence to treatment. METHOD: Within a randomized trial on the treatment of BED, adherence to 4-month GSH-I was objectively assessed in N = 89 patients with BED and overweight or obesity. Objective adherence and subjective treatment evaluation were evaluated as predictors of dropout from GSH-I, defined as having accessed 5 or less of 11 modules. Cutoffs with optimal sensitivity and specificity were derived using Receiver Operating Characteristics curves analysis, and baseline sociodemographic and clinical correlates were determined. RESULTS: According to our definition, n = 22 (24.7%) patients were defined as dropouts. Results of the full logistic regression model accounted for 72% of the variance in dropout and all objective adherence parameters (i.e., number of messages exchanged, days with a completed food diary, and days spent per module), but not patients' subjective GSH-I evaluation significantly predicted dropout. Specifically, not completing the food diary in week 7 had maximized sensitivity and specificity in predicting dropout. Patients' body mass index was positively associated with the number of messages exchanged between patients and coaches. No other associations between baseline variables and objective adherence were found. DISCUSSION: Patients at risk for dropout from GSH-I can be reliably identified via monitoring of objective adherence and may be provided with additional interventions to prevent dropout.

"In the same boat"-a mixed-methods exploration of reasons why male gastrointestinal cancer patients joined a professionally led men-only cancer support group.

PURPOSE: Gastrointestinal (GI) cancer patients often suffer high rates of distress and social isolation, partially due to symptoms that are embarrassing or difficult to discuss with family or friends. Group support therapies mitigate illness-related stigma and standardization; however, men, in particular, are more averse to joining. Through an ongoing men-only GI cancer support group, this study sought to understand who joined the groups, what facilitated group uptake, and explore men's reasons for enrolling in the group. METHODS: A mixed-methods study design and analysis were used. A qualitative design utilizing open-ended, semi-structured interviews and thematic analysis were used; Theory of Planned Behavior (TPB) directed the inquiry towards facets of group uptake. Standardized measures were also used to assess distress, coping, and quality of life (QoL) and compared with normative values for cancer and general population. Data from qualitative and quantitative findings were triangulated. RESULTS: Participants included 35 male GI cancer patients, aged 28-72, at varying stages of illness and treatment. Themes related to group uptake and enrollment were endorsement; composition; and attitudes, and reasons for joining were learning new coping techniques and affiliations with similar others. Men's QoL and psychological distress scores were on par with cancer patient norms. The scores obtained from quantitative scales corroborated with our qualitative findings. CONCLUSIONS: Despite psychosocial, demographic, and clinical variations, participants were keen on joining a male-only Supportive-Expressive Therapy (SET) group to address their emotional, informational, and supportive care needs and express their solidarity for other patients. IMPLICATIONS FOR CANCER SURVIVORS: Findings bear clinical relevance for designing GI male-centered group formats that endorse men's needs and facilitate their accessibility to group support interventions.

[Development of an evaluation system for online self-help groups by using the example of German-speaking cancer forums]. / Erstellung eines Bewertungssystems für virtuelle Selbsthilfegruppen am Beispiel deutschsprachiger Krebsforen.

Development of an evaluation system for online self-help groups by using the example of German-speaking cancer forums Objectives: This paper pursues the question how the quality of forums can be evaluated. Therefor a grading system was designed and 23 German-speaking cancer forums were evaluated by content and formal criteria Methods: Using a keyword-based internet search, 23 forums were identified. Data was gathered about: number of themes, posts and members, structure, key subjects and type of financing. Furthermore, an evaluation system was developed, with which the forums where assessed. Results: The forums were divided in forums with (n = 10) and without (n = 9) focus on a type of cancer. Four are health portals with forum-function. The quality of online cancer forums is heterogeneous, the evaluation resulted an average quality index of 2.7 for the total cancer forums Conclusion: A good information editing, moderation, data protection and transparency are important quality criteria. The evaluation of forums may help the patients, to autonomously value the quality of the presented information.

Lumbar Spine Fusion Patients' Use of an Internet Support Group: Mixed Methods Study.

BACKGROUND: Internet use within health care contexts offers the possibility to provide both health information and peer support. Internet Support Groups (ISGs) for patients may offer advantages, which are not found in face-to-face support. In patients undergoing lumbar spine fusion (LSF), ISGs could have a particular potential, as peer support on the web might bridge the decreased satisfaction with social life and social isolation found within these patients. ISGs might in this way contribute to increasing the functioning and overall health-related quality of life. However, LSF patients may generally belong to a group of citizens not prone to internet and online peer support. However, our knowledge of how LSF patients use ISGs is limited. OBJECTIVE: The aim of this study was to describe the characteristics of users of an ISG and thematically explore the content of ISG interactions in Danish patients undergoing instrumented LSF because of degenerative spine disorders. METHODS: Participants were recruited from a randomized controlled trial and included in a prospective cohort with a mixed methods design. Sociodemographic characteristics and information on psychological well-being (symptoms of anxiety and depression) were obtained at baseline and 1 to 5 weeks before surgery. Usage of the ISG was registered from baseline until 3 months after surgery. All posts and comments were collected, and content analysis was performed. RESULTS: A total of 48 participants comprised the study population, with a mean age of 53 years (range 29-77). Of the participants, 54% (26/48) were female, 85% (41/48) were cohabitating, 69% (33/48) were unemployed, and the majority (69% [33/48]) had secondary education. Approximately one-third of the participants had symptoms of depression (35%, 17/48) and anxiety (29%, 14/48). Overall, 90% (43/48) of the participants accessed the ISG. No correlations were found between sociodemographic characteristics and access to the ISG. Women were more prone to be active users, contributing with posts (P=.04). Finally, active users contributing with posts or comments had viewed more pages, whereas passive users, users without posts or comments, had more interactions with the ISG (P<.001). The ISG contained 180 conversation threads, generating 354 comments. The 180 conversation threads in the ISG were constituted by 671 independent dialogue sequences. On the basis of those 671 dialogue sequences, 7 thematic categories emerged. CONCLUSIONS: Sociodemographic characteristics were not predictors of ISG use in this study, and active use was found to be gender dependent. Content of interactions on the ISG emerged within 7 thematic categories and focused on social recognition, experience of pain or use of pain medication, experience of physical activity or physical rehabilitation, expression of psychosocial well-being, advising on and exploring the ISG, and employment, which seemed to correspond well with the prevalent occurrence of symptoms of anxiety and depression.

Effects of education and support groups organized by IBCLCs in early postpartum on breastfeeding.

OBJECTIVE: To examine the effectiveness of breastfeeding education and peer support groups organized by International Board Certified Lactation Consultants (IBCLCs) during the first week (T1) and the fifth to sixth week postpartum (T2), in terms of breastfeeding self-efficacy and exclusive breastfeeding rate. DESIGN: A quasi-experimental design. SETTING: A maternity ward of a medical center in northern Taiwan. PARTICIPANTS: 214 postpartum women. INTERVENTION: The control group (n = 122) received standard care, while the intervention group (n = 92) received standard care and attended a support group at T1 and T2. MEASUREMENTS: Outcome measures were assessed through self-administered questionnaires: Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF) and exclusive breastfeeding rate. Demographic and obstetric data were collected from participants and from their medical records. A general estimating equation, t-tests, and chi-square tests were adopted to examine hypotheses. FINDINGS: Before examining the hypotheses, homogeneous tests confirmed the equality between the groups at T1. There were significant differences in breastfeeding self-efficacy (B = 0.21, p < 0.01) between the two groups from T1 to T2. The breastfeeding self-efficacy of participants in the intervention group was significantly higher than those in the control group (t = 3.26, p = 0.01) at T2. The exclusive breastfeeding rate (61%) in the intervention group at T2 was significantly higher than the rate (39%) in the control group (chi-square=11.28, p = 0.001). KEY CONCLUSIONS: Attending IBCLC-organized breastfeeding education and support groups during early postpartum hospitalization may increase mothers' breastfeeding self-efficacy and exclusive breastfeeding rate.

A prospective and population-based inquiry on the use and acceptability of peer support for women newly diagnosed with breast cancer.

The degree to which peer support is used and accepted as a supportive care approach by women with breast cancer is unclear. We examine peer support use across three major modalities (i.e. support groups, online platforms, one-on-one) and identify enablers and barriers to peer support using the beliefs framework of the theory of planned behaviour. A population-based sample of women newly diagnosed with breast cancer (n = 3105) who were on average 54.08 weeks since diagnosis completed mailed surveys at baseline measuring beliefs about peer support and intention. Peer support use was measured via telephone interview at baseline and prospectively at 12-month follow-up (n = 2780). In all, 37% of women had used at least one peer support service since diagnosis (support group = 20%, online = 18%, one-on-one = 10%). A path analysis examined what beliefs enabled or acted as barriers to peer support use at follow-up adjusting for past behaviour (i.e. baseline use), sociodemographic characteristics, and treatment. In order of relative strength, enablers included beliefs that peer support is an outlet for honest expression of feelings (ß = .35), a source of empathy (ß = .30), approved by doctors (ß = .07), and approved by family/partner (ß = .04). Barriers were beliefs that it encourages dwelling about breast cancer (ß = - .06) and involves exposure to negative stories about this disease (ß = - .04). Strategies which communicate the potential emotional support benefits of a shared illness experience and social approval by others, particularly the medical profession, may help to promote acceptance of peer support and encourage service uptake in breast cancer.

Evaluation of Web-Based Ostomy Patient Support Resources.

PURPOSE: To evaluate currently available, no-cost, Web-based patient support resources designed for those who have recently undergone ostomy surgery. DESIGN: Descriptive, correlational study using telephone survey. SAMPLE AND SETTING: The sample comprised 202 adults who had ostomy surgery within the previous 24 months in 1 of 5 hospitals within a large healthcare organization in the Midwestern United States. Two of the hospitals were academic teaching hospitals, and 3 were community hospitals. METHODS: The study was divided into 2 phases: (1) gap analysis of 4 Web sites (labeled A-D) based on specific criteria; and (2) telephone survey of individuals with an ostomy. In phase 1, a comprehensive checklist based on best practice standards was developed to conduct the gap analysis. In phase 2, data were collected from 202 participants by trained interviewers via 1-time structured telephone interviews that required approximately 30 minutes to complete. Descriptive analyses were performed, along with correlational analysis of relationships among Web site usage, acceptability and satisfaction, demographic characteristics, and medical history. RESULTS: Gap analysis revealed that Web site D, managed by a patient advocacy group, received the highest total content score of 155/176 (88%) and the highest usability score of 31.7/35 (91%). Two hundred two participants completed the telephone interview, with 96 (48%) reporting that they used the Internet as a source of information. Sixty participants (30%) reported that friends or family member had searched the Internet for ostomy information on their behalf, and 148 (75%) indicated they were confident they could get information about ostomies on the Internet. Of the 90 participants (45%) who reported using the Internet to locate ostomy information, 73 (82%) found the information on the Web easy to understand, 28 (31%) reported being frustrated during their search for information, 24 (27%) indicated it took a lot of effort to get the information they needed, and 39 (43%) were concerned about the quality of the information. CONCLUSION: Web-based patient support resources may be a cost-effective approach to providing essential ostomy information, self-management training, and support. Additional research is needed to examine the efficacy of Web-based patient support interventions to improve ostomy self-management knowledge, skills, and outcomes for patients.

Pragmatic, consensus-based minimum standards and structured interview to guide the selection and development of cancer support group leaders: a protocol paper.

INTRODUCTION: Across the globe, peer support groups have emerged as a community-led approach to accessing support and connecting with others with cancer experiences. Little is known about qualities required to lead a peer support group or how to determine suitability for the role. Organisations providing assistance to cancer support groups and their leaders are currently operating independently, without a standard national framework or published guidelines. This protocol describes the methods that will be used to generate pragmatic consensus-based minimum standards and an accessible structured interview with user manual to guide the selection and development of cancer support group leaders. METHODS AND ANALYSIS: We will: (A) identify and collate peer-reviewed literature that describes qualities of support group leaders through a systematic review; (B) content analyse eligible documents for information relevant to requisite knowledge, skills and attributes of group leaders generally and specifically to cancer support groups; (C) use an online reactive Delphi method with an interdisciplinary panel of experts to produce a clear, suitable, relevant and appropriate structured interview comprising a set of agreed questions with behaviourally anchored rating scales; (D) produce a user manual to facilitate standard delivery of the structured interview; (E) pilot the structured interview to improve clinical utility; and (F) field test the structured interview to develop a rational scoring model and provide a summary of existing group leader qualities. ETHICS AND DISSEMINATION: The study is approved by the Department Human Ethics Advisory Group of The University of Melbourne. The study is based on voluntary participation and informed written consent, with participants able to withdraw at any time. The results will be disseminated at research conferences and peer review journals. Presentations and free access to the developed structured interview and user manual will be available to cancer agencies.

Effects of Using Child Personas in the Development of a Digital Peer Support Service for Childhood Cancer Survivors.

BACKGROUND: Peer support services have the potential to support children who survive cancer by handling the physical, mental, and social challenges associated with survival and return to everyday life. Involving the children themselves in the design process allows for adapting services to authentic user behaviors and goals. As there are several challenges that put critical requirements on a user-centered design process, we developed a design method based on personas adapted to the particular needs of children that promotes health and handles a sensitive design context. OBJECTIVE: The purpose of this study was to evaluate the effects of using child personas in the development of a digital peer support service for childhood cancer survivors. METHODS: The user group's needs and behaviors were characterized based on cohort data and literature, focus group interviews with childhood cancer survivors (n=15, 8-12 years), stakeholder interviews with health care professionals and parents (n=13), user interviews, and observations. Data were interpreted and explained together with childhood cancer survivors (n=5) in three explorative design workshops and a validation workshop with children (n=7). RESULTS: We present findings and insights on how to codesign child personas in the context of developing digital peer support services with childhood cancer survivors. The work resulted in three primary personas that model the behaviors, attitudes, and goals of three user archetypes tailored for developing health-promoting services in this particular use context. Additionally, we also report on the effects of using these personas in the design of a digital peer support service called Give Me a Break. CONCLUSIONS: By applying our progressive steps of data collection and analysis, we arrive at authentic child-personas that were successfully used to design and develop health-promoting services for children in vulnerable life stages. The child-personas serve as effective collaboration and communication aids for both internal and external purposes.

Online support groups for head and neck cancer and health-related quality of life.

PURPOSE: To investigate the association between using online support groups (OSGs) and health-related quality of life (HRQoL), and the psychosocial factors that may influence this association among individuals with head and neck (H&N) cancer. METHOD: A sample of 199 persons with H&N cancer using four OSGs completed an online questionnaire using six pre-validated measures for social network, self-efficacy, anxiety and depression, adjustment, empowerment and quality of life. In addition, socio-demographic as well as illness-related and OSGs-related information was collected. RESULTS: Participants who had better HRQoL had been using OSGs for a longer time than those who had worse HRQoL (B = 0.07, p < 0.05). Depression and adjustment were the only direct mediators in this association, whereas self-efficacy, anxiety and empowerment appeared as indirect mediators. CONCLUSION: Participation in OSGs was found to be associated to better HRQoL either directly or indirectly through decreasing depression, anxiety and the negative adjustment behaviours and increasing self-efficacy and empowerment of the users. The study presented a potential model of pathways linking OSG use and HRQoL for those with H&N cancer. However, the model needs to be tested in future longitudinal studies and the associations proposed need to be explored in greater detail.

"You get to know the people and whether they're talking sense or not": Negotiating trust on health-related forums.

The internet is increasingly being used as a source of health advice and information by individuals with long term conditions (LTCs). Specifically, online forums allow people to interact with others with similar conditions. However, it is not clear how online health information is assessed by those with LTCs. This study aims to address this gap by exploring how individuals with contested and uncontested LTCs utilise internet forums. Semi-structured interviews were conducted with 20 participants with ME/CFS and 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. The findings indicate that the use of online forums was a complex and nuanced process and was influenced by a number of individual and illness-specific factors. Participants trusted those with similar experiences and perspectives as themselves, while also valuing conventional biomedical information and advice. By accessing support online, forum users were able to draw on a personalised form of support based on the lived experiences of their peers. However, the role of digital literacy in developing and maintaining online relationships must be acknowledged.

Acute alcoholic hepatitis, end stage alcoholic liver disease and liver transplantation: an Italian position statement.

Alcoholic liver disease encompasses a broad spectrum of diseases ranging from steatosis steatohepatitis, fibrosis, and cirrhosis to hepatocellular carcinoma. Forty-four per cent of all deaths from cirrhosis are attributed to alcohol. Alcoholic liver disease is the second most common diagnosis among patients undergoing liver transplantation (LT). The vast majority of transplant programmes (85%) require 6 mo of abstinence prior to transplantation; commonly referred to as the "6-mo rule". Both in the case of progressive end-stage liver disease (ESLD) and in the case of severe acute alcoholic hepatitis (AAH), not responding to medical therapy, there is a lack of evidence to support a 6-mo sobriety period. It is necessary to identify other risk factors that could be associated with the resumption of alcohol drinking. The "Group of Italian Regions" suggests that: in a case of ESLD with model for end-stage liver disease < 19 a 6-mo abstinence period is required; in a case of ESLD, a 3-mo sober period before LT may be more ideal than a 6-mo period, in selected patients; and in a case of severe AAH, not responding to medical therapies (up to 70% of patients die within 6 mo), LT is mandatory, even without achieving abstinence. The multidisciplinary transplant team must include an addiction specialist/hepato-alcohologist. Patients have to participate in self-help groups.

Meeting needs of family members of persons with life-threatening illness: a support group program during ongoing palliative care.

OBJECTIVE: The aim of the study was to describe family members' experiences of content, structure, and approach of a potential intervention including a support group program for family members of persons with life-threatening illness. METHOD: The study was a pilot project in a developmental phase in which a potential intervention, a support group program, was investigated. The design of the study was qualitative descriptive. Twenty-nine family members were interviewed by telephone after taking part in the program. The interviews were analyzed using qualitative content analysis. RESULTS: The results indicate that the support group program could work as an acceptable and useful intervention for family members. The program was experienced to cover topics of immediate interest reflecting life close to severely ill persons. The structure of the program was found to be inviting, offering an opportunity to establish relationships with other participants and the caring team in a warm atmosphere. SIGNIFICANCE OF RESULTS: The study indicates the importance of health professionals inviting and interacting with family members during ongoing palliative care. The results could inspire nursing staff to initiate, develop, and deliver similar interventions.

Development and evaluation of a culturally sensitive support group programme for Chinese-Australian women with breast cancer: a pilot study.

Cancer support groups are an important vehicle for providing informational and psychosocial support to cancer survivors. Studies suggest that people from minority cultures are underrepresented in cancer support groups. The aims of this study were to report the development and evaluation of a culturally sensitive support group programme for Chinese-Australian women with breast cancer and to evaluate the informational and psychosocial impact of the programme. In collaboration with a Chinese cancer support organisation, 29 women were enrolled in the programme which was evaluated by a combination of quantitative and qualitative approaches. The results indicated that the programme was well received by the participants who suggested that the content was useful and relevant. In addition, the findings indicated that the programme, designed to be culturally sensitive and linguistically appropriate, was effective in providing informational support and psychosocial support for the participants. A methodology for giving breast cancer survivors a sense of interconnectedness and thus minimising their feelings of isolation and helplessness, were also among the chief outcomes of this study. The study provided some insight into the development of supportive cancer survivorship care for women being treated for breast cancer in the Australian-Chinese community.

[Certification of myasthenia centres: developing and implementing a certification procedure for patient organisations]. / Zertifizierung von Myasthenie-Zentren - Entwicklung und Umsetzung eines Zertifizierungsverfahrens für Patientenorganisationen.

BACKGROUND: Certifications for quality management systems or disease-specific certifications have become increasingly popular in the German healthcare system. For chronic or rare diseases, however, patient safety and a patient-centred healthcare management have high priority. These aspects are often not adequately accounted for by the usual certification models. METHODS: The BQS Institute for Quality and Patient Safety has developed a certification for the Deutsche Myasthenie Gesellschaft (DMG), a patients' self-help organisation. Standards for the certification were drafted by medical experts on the basis of guidelines and the scientific literature and were implemented into applicable criteria by the BQS Institute. Special emphasis was placed on translating patients' needs into the criteria catalogue. RESULTS: The certificate "Integrierte Myasthenie-Zentren der DMG" [Integrated Myasthenia Centres of the DMG] is based on an all-day audit and includes a peer review. The active involvement of patients in the audit teams and in the certification board ensures that patient-relevant aspects are consistently taken into consideration besides medical criteria and quality management requirements. Notwithstanding the high medical quality in the two hospitals participating in the pilot phase, additional potential for improvement could be identified during the audits. DISCUSSION: Certifications issued under the responsibility of patient organisations meet the need for specific quality improvement instruments for chronic and rare diseases. Acceptance of those certifications is enhanced by peer reviewing during the audits. From the patients' viewpoint all important aspects were incorporated into the certification concept.

Is there an "ideal cancer" support group? Key findings from a qualitative study of three groups.

The objective of this study was to study differently composed cancer support groups to generate insights into what groups are attractive to the widest range of participants, and how they might be best structured and composed. This study applied a qualitative design utilizing participant observation at three cancer support groups (a group for women with metastatic cancer, a colorectal cancer support group, and a group for Chinese cancer patients) and in-depth interviews (N = 23) with group members as the primary data collection methods. Despite the diverse composition of the groups, their perceived benefits were similar, and informants highlighted the information, acceptance, and understanding they received in the support group environment. However, gender and cultural differences were found in attendance patterns and the desired content of group meetings. Importantly, participants' motivations for attending cancer support groups also changed as they moved through the treatment trajectory: over time the need for information was at least partially replaced by a need for support and understanding. This study supports prior research findings that there is no ideal support group, nor is there a "magical formula" for attracting and retaining a diverse audience. However, including an educational component in support groups may increase the participation of currently underrepresented populations such as men and patients from culturally diverse backgrounds.