Internet-based Support Groups Research Articles

Variations in Pattern of Social Media Engagement between Individuals with Chronic Conditions and Mental Health Conditions

The use of the internet and supported apps is at historically unprecedented levels for the exchange of health information. The increasing use of the internet and social media platforms can affect patients’ health behavior. This study aims to assess the variations in patterns of social media engagement between individuals diagnosed with either chronic diseases or mental health conditions. Data from four iterations of the Health Information National Trends Survey Cycle 4 from 2017 to 2020 were used for this study with a sample size (N) = 16,092. To analyze the association between the independent variables, reflecting the presence of chronic conditions or mental health conditions, and various levels of social media engagement, descriptive statistics and logistic regression were conducted. Respondents who had at least one chronic condition were more likely to join an internet-based support group (Adjusted Odds Ratio or AOR = 1.5; Confidence Interval, CI = 1.11–1.93) and watch a health-related video on YouTube (AOR = 1.2; CI = 1.01–1.36); respondents with a mental condition were less likely to visit and share health information on social media, join an internet-based support group, and watch a health-related video on YouTube. Race, age, and educational level also influence the choice to watch a health-related video on YouTube. Understanding the pattern of engagement with health-related content on social media and how their online behavior differs based on the patient’s medical conditions can lead to the development of more effective and tailored public health interventions that leverage social media platforms.

Assessing the long-term priorities of pancreaticoduodenectomy survivors

BackgroundThis study assessed the long-term quality of life (QOL) and priorities of pancreaticoduodenectomy (PD) survivors. MethodsSurvivors were surveyed via internet-based support groups. The relative importance of longevity, experience, costs, and QOL were assessed. ResultsThe PD cohort (n = 247, 35%) was 60 ± 12 years, 71% female, and 93% white. With moderate agreement, patients ranked survival most important, followed by functional and emotional well-being; costs and experience were least important (W = 35.7%, p < 0.001). Well-being improved throughout survivorship (P-QOL: 39 ± 12 at ≤3 mo vs 43 ± 12 at >10 y, p = 0.170; M-QOL: 38 ± 13 at ≤3 mo vs 44 ± 16 at >10 y; p = 0.015) but remained below the general population (p < 0.001). PD patients with benign diagnoses ranked functional independence as most important (2.00 ± 1.13 vs 2.63 ± 1.19, p < 0.001, W = 41.1%); PD patients with malignant diagnoses regarded overall survival most important (2.10 ± 1.20 vs 1.82 ± 1.22, p < 0.16, W = 35.1%). The mean rank order of priorities remained concordant between short-term (<1 year) and long-term (>5 years) survivors. ConclusionPD survivors experience long-term mental and physical health impairments, underscoring the importance of functional and emotional support. Survivors place paramount importance on overall survival, functional independence, and emotional well-being. Cancer survivors prioritize longevity, while survivors of chronic benign conditions prioritize functional independence.

Female survivors’ experiences of authorities’ actions in cases of partner stalking

Previous studies have shown that civil authorities fail to understand the nature of stalking and the harmful consequences it causes victims. The aim of this study was to investigate how the victims of partner stalking had perceived the actions of civil authorities and the stalking investigation process. The data were drawn from conversations among members of an internet-based peer support group for female victims of partner stalking. We identified four main categories of victims’ experiences pertaining to authorities’ actions and the investigation process: authorities’ problems in dealing with stalking, dissatisfaction with the investigation process, trust in the authorities and expectations of future actions by the authorities. Negative experiences were clearly foregrounded in the data. The results indicate that civil authorities continue to have problems in dealing with stalking. Authorities, especially the police, representatives of the justice system and child protection personnel should be offered more comprehensive education to enable them to deal more effectively when encountering female stalking victims.

Trivialized and overlooked: A qualitative investigation of men recruited from an Internet-based forum for short-statured individuals.

Height frequently functions as a cue to the masculine status of men. Despite the socially prescribed ideal physique for men being tall, lean, and muscular, in the context of male body image research height remains underexplored relative to muscularity and body fat. We conducted a qualitative investigation of men’s experiences of height dissatisfaction, drawing upon a sample of 15 men ranging in height from 154 cm to 172 cm (M = 164.80, SD = 5.53), recruited from an Internet-based support group for short-statured individuals. Data were analyzed by 2 independent raters, and in accordance with thematic analysis procedures. Two main themes were identified: (a) the belief that others view short men as inferior and (b) experience of height dissatisfaction. A total of nine subthemes, which reflect key features within the data, were organized beneath the two main themes. Findings demonstrate that the consequences of short stature experienced by participants extend beyond body dissatisfaction to interpersonal processes and functioning in social, professional, and romantic domains. We suggest that height dissatisfaction primarily arises due to negative attributions relating to interpersonal experiences and internalized pejorative social attitudes toward men of short stature. In conclusion, short stature is a significant and pervasive issue for some men that is often—and unjustly—trivialized and overlooked.

After the ordeal: health communication messages in a pregnancy-OSG

The increase use of internet open up a broad spectrum of usage. Among those are the use of sharing platform such as Instagram and facebook for particular communities. Support groups are essential part of health treatment and recovery, in this case for pregnancy condition. One can try to find solace and information through online support group. Online support group enable people from around the globe to communicate, discuss and encourage others with similar condition. This article delves the question of how women use internet-based health support group. The researcher conduct qualitative discourse analysis on an online pregnancy support group and various literatures which explores the use of internet-based support group. The findings show that women use online support group because they found lack of support offline, they need information and emotional support regarding their pregnancy loss and the recovery process, the role of medical expert and the spouses are perceived differently.

"WHAT WE CANNOT SPEAK ABOUT WE MUST TWEET": TRUST AMONG ISRAELI TWITTER USERS WITH DEPRESSION

Research on self-revealing online environments in general and on internet-based medical support groups in particular has demonstrated that participants in such environments customarily assume others to be worthy of intimacy that is indeed reciprocated, resulting in a generalized climate of mutual trust that nevertheless meets significant challenges in actual online practice. While most previous studies have examined this phenomenon in the context of blogs, forums, and social media groups explicitly devoted to specific _physical_ illnesses, in this study we focus on a "naturally" developing, unstructured, a-hierarchical "community"-of-sorts that is based on a shared _mental_ disorder – Israeli Twitter users with depression. In-depth interviews with these users demonstrate how the unique affordances of Twitter in Israel – and especially its lack of popularity and its construction as the "anti-Facebook" – have enabled it to become a discursive space in which non-hegemonic voices are more prominent.&#x0D; While Twitter users with depression were cautious in developing trust, once trust was inferred it became a central facet of their perception of Twitter and its supportive role. Users conceived of Twitter as a sanctuary and echo chamber in which people with depression can present their authentic selves to an empathetic, non-judgmental community of similar outcasts. At the same time, the community's expectations for profound authenticity paradoxically led some users to avoid tweeting about positive experiences. In addition, Twitter's marginal status allowed users to link their sense of _psychological_ reclusiveness to their sense of _political_ isolation in a climate in which leftist views are increasingly ostracized.&#x0D;

Analyzing Knowledge Construction in Online Health Group Discussion

The ongoing transition to the patient-centred healthcare paradigm suggests that patients adopt an active role in managing their health conditions. As a result, the Internet is becoming an important source of health-related information. Internet-based health support groups allow patients to access diverse information relevant to their particular situation by participating in online discussions. The quality of such information may have effects on the patients’ health outcomes. The purpose of the present study was to investigate the effects of knowledge construction in health support group online discussions on perceived information quality, information quality from the perspective of information consumers, and on information integrity, that is, validity from the point of view of the current state of scientific knowledge. It was hypothesised that knowledge construction results in better perceived information quality and in higher information integrity. A health support group online discussion site devoted to weight management was used as a source of data. Quantitative content analysis was used with a discussion thread as a unit of analysis. Based on the findings, the study suggested that moderators of health support group online discussions should promote explicitation or lower level knowledge construction by encouraging clarifications and refinements of health-related recommendations. Moreover, participation of qualified health practitioners is desirable to promote health-related behaviours based on evidence-based knowledge and to expose recommendations that have uncertain or even dangerous effects.

Second Opinions From Medical Oncologists for Early-Stage Breast Cancer

Advances in the evaluation and treatment of breast cancer have made the clinical decision-making context much more complex. A second opinion from a medical oncologist may facilitate decision making for women with breast cancer, yet little is known about second opinion use. To investigate the patterns and correlates of second opinion use and the effect on chemotherapy decisions. A total of 1901 women newly diagnosed with stages 0 to II breast cancer between July 2013 and September 2014 (response rate, 71.0%) were accrued through 2 population-based Surveillance, Epidemiology, and End Results registries (Georgia and Los Angeles County, California) and surveyed about their experiences with medical oncologists, decision making, and chemotherapy use. Factors associated with second opinion use were evaluated using logistic regression. Also assessed was the association between second opinion and chemotherapy use, adjusting for chemotherapy indication and propensity for receiving a second opinion. Multiple imputation and weighting were used to account for missing data. A total of 1901 patients with stage I to II breast cancer (mean [SD] age, 61.6 [11.0] years; 1071 [56.3%] non-Hispanic white) saw any medical oncologist. Analysis of multiply imputed, weighted data (mean n = 1866) showed that 168 (9.8%) (SE, 0.74%) received a second opinion and 54 (3.2%) (SE, 0.47%) received chemotherapy from the second oncologist. Satisfaction with chemotherapy decisions was high and did not differ between those who did (mean [SD], 4.3 [0.08] on a 1- to 5-point scale) or did not (4.4 [0.03]) obtain a second opinion (P = .29). Predictors of second opinion use included college education vs less education (odds ratio [OR], 1.85; 95% CI, 1.24-2.75), frequent use of internet-based support groups (OR, 2.15; 95% CI, 1.12-4.11), an intermediate result on the 21-gene recurrence score assay (OR, 1.85; 95% CI, 1.11-3.09), and a variant of uncertain significance on hereditary cancer genetic testing (OR, 3.24; 95% CI, 1.09-9.59). After controlling for patient and tumor characteristics, second opinion use was not associated with chemotherapy receipt (OR, 1.04; 95% CI, 0.71-1.52). Second opinion use was low (<10%) among patients with early-stage breast cancer, and high decision satisfaction regardless of second opinion use suggests little unmet demand. Along with educational level and use of internet support groups, uncertain results on genomic testing predicted second opinion use. Patient demand for second opinions may increase as more complex genomic tests are disseminated.

Attitudes about the use of internet support groups and the impact among parents of children with Cornelia de Lange syndrome.

There is an abundance of information in the literature on patient experiences with Internet support groups (ISGs). However, studies exploring these experiences in a rare disease population are scarce, even though these families are often at a disadvantage for resources, reliable information, and support. The aim of the current study was to explore the experiences with ISGs for parents of children with Cornelia de Lange syndrome (CdLS), a rare genetic diagnosis, in order to better understand the impact on emotional support and their child's medical care. Focus groups were conducted to inform the design of a large-scale internet survey. The survey asked parents closed- and open-ended questions regarding experiences with ISGs, with a focus on the psychosocial, medical, and logistical aspects. The survey found that 141/170 (82.6%) respondents have visited an Internet-based support group to find support or information about their child's CdLS diagnosis. The majority of respondents (71.7%) reported that ISGs have been helpful in finding emotional support, with the most common areas impacted as a result of ISG participation being behavior toward their children and family dynamic. Regarding medical care, most respondents (63.9%) reported that ISGs have been helpful in finding medical information and support, with the most commonly impacted areas of their child's care including day-to-day management, diet, therapy interventions, and healthcare providers. These findings provide a greater understanding of the role of Internet networking in healthcare and may inform future approaches to medical care and psychosocial support for rare, complex genetic diagnoses. © 2016 Wiley Periodicals, Inc.

Protocol of a Randomized Controlled Trial of an Online Support Group for Sexual Distress Due to Gynecologic Cancer

Objective: To demonstrate the efficacy of a 12-week, professionally-facilitated, Internet-based support group for women who are sexually distressed due to gynaecologic cancer and its treatment. Methods: The participants are women who received treatment for gynaecologic cancer, were diagnosed within the previous five years and who currently have no evidence of disease. They must meet a minimum cut-off score on the Revised Female Sexual Distress Scale (FSDS-R). Enrolled participants are randomized to the immediate treatment condition or to the waitlist control condition. The intervention is delivered in an asynchronous format (i.e., bulletin board), and also includes two scheduled synchronous (i.e., live chat) sessions. Each week, a new topic relating to sexuality and gynaecologic cancer is introduced, and group members are given access to psych educational materials on that topic. Assessments are completed at baseline, month 5, and month 9. The primary outcome is sexual distress, and the secondary outcomes include sexual function, body image, depression and anxiety, relationship satisfaction, and perceived social support. Results: To date, 234 of the planned 520 participants have been enrolled and 7 groups (4 immediate treatments and 3 waitlist) have been conducted. Conclusion: Women treated for gynaecologic cancer often experience psychosexual distress. Demonstrating the efficacy of an online intervention that targets those concerns is an important step towards meeting the needs of survivors of gynaecologic cancer.

How language affects peer responsiveness in an online cancer support group: implications for treatment design and facilitation.

Little is known about how positive group interactions develop in online support groups. Previous research suggests that message content, self-disclosure, and emotional expression may be central to this process. The purpose of this study was to identify linguistic and qualitative characteristics of participants' messages that predict how other participants respond in an asynchronous discussion board for cancer-related distress. 525 discussion board messages posted by 116 participants in the health-space.net trial were collected. Linguistic Inquiry and Word Count (2001) was used to identify linguistic markers of emotional expression and pronoun use. Message topics were identified using qualitative analysis. Logistic regression and chi-square analyses were used to evaluate whether linguistic characteristics and message topics predicted receiving a response from other survivors in the online group. Messages were more likely to receive a reply if they had higher word count, OR=1.30, p=0.001, or fewer second-person pronouns, OR=0.923, p=0.040. Messages with high levels of positive emotion were less likely to receive a reply, OR=0.94, p=0.03. Common message topics related to self-disclosure (51%), the support group (38.5%), medical experiences (30.9%), and experiences with the website (30.1%). Several message topics were associated with greater likelihood of a reply: self-disclosure (p<0.001), medical experiences (p=0.01), relationship issues (p=0.05), and introductory posts (p<0.01). Informing participants how to introduce themselves to the group (i.e., detailed and self-focused messages discussing personal issues such as the effects of illness on life and relationships) could promote cohesion and enhance overall engagement with Internet-based support groups or interventions.

EPA-0404 – Correlation and causality between the use of online health forums and suicidality: evidence from a german representative survey and a large-scale online panel survey

Introduction Suicide is a leading cause of death worldwide and a top leading cause of death among youths. Since younger age groups spend more time with internet-based applications, chances and risks of health forums have been scrutinized. It has been assumed that the use of health forums increases suicidality. Objectives/Aims This study aims to disentangle the presumed causality between the use of online health forums and suicidality. Methods A German representative telephone survey and a two-wave online panel survey with same question wording have been concurrently conducted in 2013. Both surveys included questions on suicidality (Poldinger, 1968) and internet-based health forums use. Results The German representative cross-sectional data show significant positive correlations between suicidality and online health forum use, especially among younger age groups (Table 1). Using a large-size online access panel, we estimated an autoregressive model that reveals a positive cross-lagged effect of suicidality on internet-based health forum use one month later (Figure 1). Conclusions Despite the wide-spread notion that online health forums can increase suicidality our data shows an inverse effect. These results point to the preventive potential of accessible and helpful information in online health forums. Table 1 . Bivariate correlations between suicidality and internet-based health forum use for different age groups in a German representative survey. internet-based health forum use 18–29y 30–39y 40–49y 50–59y 60–69y 70y+ suicidality .12 * .15 * .11 * .16 ** .05 .03 n 257 265 358 332 213 144 Note. For all scales, higher scores are indicative of more extreme responding in the direction of the construct assessed. Suicidality was measured by the suicidality scale suggested by Poldinger (1968) and consisted of 16 yes/no questions. Internet-based health forum or support group use was measured on a 5-point Likert-like scale ranging from 1 “(almost) never“to 5 “(almost) every day“. * p ** p Download : Download full-size image Figure 1. Higher suicidality (t0) influences the use of internet-based health forums or support groups one month later (t1). Participants (n = 1319) were recruited from an online access panel (soSci Panel). Suicidality was measured by the suicidality scale suggested by Poldinger (1968) and consisted of 16 yes/no questions. Internet-based health forum or support group use was measured on a 5-point Likert-like scale ranging from 1 “(almost) never” to 5 “(almost) every day”. For all scales, higher scores are indicative of more extreme responding in the direction of the construct assessed. Coefficients are standardized coefficients. p X2 = 1, p

Patient perspectives of dabigatran: analysis of online discussion forums.

In 2010 the US FDA approved dabigatran, the first new anticoagulant for stroke prevention in non-valvular atrial fibrillation (AF) since 1954. To date there is little data that reflects the experiences and perceptions of real-world patients with dabigatran. The abundance of Internet-based discussion forums and support groups related to AF or anticoagulation may provide a low-cost resource for assessing patient experiences. The aim of this study was to determine patient experiences and perceptions regarding dabigatran through qualitative thematic content analysis of comments posted on publicly accessible virtual discussion forums and Internet support groups. Comments posted between January 2011 and September 2012 were downloaded from websites focusing on support of patients with AF or on anticoagulation therapy. Comments were analyzed for thematic content. Five broad thematic categories emerged from the posted comments: general concerns about safety and efficacy, questions about indications and contraindications, questions about proper use and storage, questions about diet and drug restrictions, and experiences with perceived side effects. Our data revealed that a primary concern for patients taking dabigatran is the lack of antidote to reverse the effects of dabigatran if bleeding occurs. Several questions pertaining to the use of dabigatran with other medications or medical conditions were noted, and multiple patients expressed confusion about instructions for using dabigatran before and after medical procedures. An unexpected finding included several criticisms of the medication packaging, which many patients found inconvenient or difficult to open. Finally, several perceived side effects were noted, including some not reported in clinical trials. Online communities may provide information about topics that are a concern to patients and that may not be discernible in clinical trials, such as medication side effects, proper use, and safety. Our data also highlighted potential topics that may not be a priority to researchers but are nevertheless important to patients (e.g. medication convenience or packaging). Despite the growing use of online health-related communities, very little research makes use of this low-cost resource for identifying patient interests regarding therapeutic treatments to guide patient-oriented research.

An Investigation of the Informational Needs of Ovarian Cancer Patients and Their Supporters

Numerous Internet-based peer support groups exist to support the informational needs of patients with chronic illnesses. By analyzing the discussions available in the forum of a major ovarian cancer support group, the Ovarian Cancer National Alliance (OCNA), this study investigates the type of information that newly diagnosed ovarian cancer patients and their supporters seek. Using content analysis, 206 publicly available discussion posts exchanged on OCNA were analyzed by two researchers. Each discussion point was classified into one of the three broad themes that emerged: ovarian cancer-specific, treatment-related, or coping information. The discussion points were further analyzed using a multinomial logit model to predict the type of the desired information based on the role of the person looking for the information, the disease phase in which the information was sought, the emotional status of the information seeker, and the stage of the cancer. The results suggest that there is a wide variety of information seekers with divergent goals. Treatment-related material was the most sought-after information by patients, while coping information was most sought by supporters. When forum posts were negative in tone, the information seekers were more likely to be looking for ovarian cancer-specific information than either treatment-related information or coping information. This suggests that the presentation of ovarian cancer-specific information should be particularly sensitive to the negative emotional state of the people seeking this information.

Gluten Free Diet, Perceptions and Concerns of People Living with Celiac Disease in India: Internet-based Survey of Members of ‘Zero Gluten’ on Facebook

ABSTRACT Introduction Gluten free diet (GFD) for the treatment of celiac disease (CD) remains a lifelong challenge for patients and their parents in India. There is little knowledge available about how these patients experience and cope with their dietary needs in India. Aims (i) To assess the status of gluten free diet and problems faced while managing GFD. (ii) To get an incite about their perceptions and concerns. Study design Cross-sectional descriptive internet-based survey. Materials and methods A predesigned semistructured questionnaire was prepared and mailed to members of ‘zero gluten’ on Facebook; an internet-based social support group for Indian CD patients, who were on GFD for a variable period of time. Those who decided to participate returned the filled questionnaire along with consent, which were analyzed. Results Out of 120 members, 32 filled the questionnaire and returned back. These computer literate CD patients were from different Northern states of India. Age ranged from 3 to 36 years with mean age 20.75 years. Mean duration of GFD was 3 years and average age at diagnosis was 13.7 years. Knowledge about possible options in GFD was limited. Branded GF products were in demand; 71.9% were buying them. Follow-up was poor and involvement of dieticians while managing GFD was rare. Their major concerns were professional needs, transmission to kids, marriage and peer pressure. Conclusion Managing GFD in India is difficult; help of trained dieticians, regular follow-up and psychological support is needed to sustain these dietary changes for life. How to cite this article Verma S. Gluten Free Diet, Perceptions and Concerns of People Living with Celiac Disease in India: Internet-based Survey of Members of ‘Zero Gluten’ on Facebook. J Postgrad Med Edu Res 2013;47(2):107-111.

Internet‐Based Chat Support Groups for Parents in Family‐Based Treatment for Adolescent Eating Disorders: A Pilot Study

This study aims to examine the feasibility and acceptability of an Internet-based chat support group for parents implementing family-based treatment (FBT). Participants (N = 13) were parents of adolescents with eating disorder who participated in 15 weekly online therapist-guided chat sessions. Sessions focused on encouraging and supporting parental efforts to help their child overcome an eating disorder. Chat programme satisfaction ratings were high (91.7%). Participants reported looking forward to chat sessions and would recommend the chat to others. The vast majority reported that the chat helped them cope with their child's eating disorder and to implement FBT. Participants reported feeling that they could talk openly and honestly in sessions and had a sense of belonging to the group. Relatively few technical problems were reported, and the chat was rated as accessible, convenient and easy to use. Findings provide preliminary support for the utility of an online parent chat as an adjunct to FBT.

Outcomes from a peer tutor model for teaching technology to older adults

ABSTRACTA key component of social work ethics is social justice and equitable access to resources. Increasingly, this includes access to technology. This study addresses issues related to the ‘digital divide’ by testing a peer tutor model (Technology and Aging Project, TAP2) to teach adults aged 60 and older how to use information and communication technologies (ICTs) such as email, the internet, online chat rooms and discussion groups, internet-based support groups, and voice technology and webcams. Participants from the control group of a previous programme, TAP1 (N=19) participated in a six-month computer training programme. Six participants who had successfully completed the TAP1 training were selected to be peer tutors. Data were collected from tutors and learners at baseline, three months, six months and nine months (three months after the end of training). The current study reports on learner outcomes only. Measures include computer, social support, and mental health-related outcomes. Learners reported a significant and consistent increase over time in their confidence completing certain computer-related tasks and their overall use of ICTs. Mental health and social support outcomes did not change. Overall, the peer tutor model appeared to be at least as effective as the previous staff-directed model.

‘It's not supposed to be this way’: Psychological aspects of a premature menopause

AbstractBackground: Premature menopause (menopause diagnosed at 40 years or under) is a challenging condition with no prevention or cure. Causes can be the result of surgical intervention or spontaneous and largely unknown. It affects 1–6% of women aged 14–40. Aim: This study investigated women's experience of diagnosis, perception of cause, treatment received, main concerns, perceived long‐term consequences and impact on psychological wellbeing. Method: A cross‐sectional single group design questionnaire study that included both quantitative and qualitative measures was used. It was distributed to women on the database of two specialist London clinics and an internet‐based patient support group. A thematic analysis was undertaken. Findings: The response rate was 62%. Women's experiences varied but showed common themes regardless of timing of diagnosis and services accessed. Improved understanding by health professionals could help this group accept and adjust to the condition more effectively as could psychological support. Fertility was a primary concern regardless of parity and there were several secondary impacts both physiological and psychological. Discussion: A clear need for the offer of emotional support was indicated for all, but particularly for teenage girls and single women who tended not to access support from their own social network. Conclusion: Young women with this diagnosis could benefit from the offer of counselling, though uptake may be influenced by individual factors and vary according to age and circumstances. A good understanding of the physical aspects of this condition is important in the counselling of this group.

A Qualitative Study of an Internet-Based Support Group for Women with Sexual Distress Due to Gynecologic Cancer

Internet-based support groups for cancer patients have been studied extensively; very few have focused on gynecologic cancer. We pilot-tested a web-based support group for gynecologic cancer patients and assessed women's perceptions of the intervention. Twenty-seven gynecologic cancer patients were randomized to an immediate intervention or a waitlist control group. Women participated in a 12-week, web-based support group focusing on sexuality-related topics. Semi-structured interviews were conducted to investigate the feasibility and efficacy of the intervention. Women reported benefits to participating in the intervention, including receiving support from group members and moderators, increased emotional well-being, improved feelings of body image and sexuality, and comfort in discussing sexuality online. Web-based support groups are both feasible and accepted by gynecologic cancer patients with psychosexual distress. The online format provided women with easy access to the support group and anonymity in discussing psychosexual concerns. Women with gynecologic cancer may benefit from participating in online support groups which provide an environment of relative anonymity to discuss psychosexual concerns.

Relevance of Lifestyle and Attitudinal Factors to Spine Surgery Outcomes: Empirical Results on a Heterogeneous Sample

Background Context: Patient demographic and medical indicators influence the well-being of spine surgery patients. It may, however, be worthwhile to evaluate other lifestyle and attitudinal factors. We hypothesized that such factors would explain at least as much variance in outcome as more commonly considered covariates. Purpose: To compare explained variance in outcome of lifestyle and attitudinal factors as compared to standard demographic and medical covariates. Study Design/Setting: Cross-sectional observational study of patients drawn from an active clinic and internet-based support group. Patient Sample: A heterogeneous sample of 376 patients was recruited, comprised of people with diagnoses of cervical (n = 80), lumbar (n = 228), and scoliosis (n = 68) spine disorders. Outcome Measures: Quality of Life (QOL) outcomes were measured using the Oswestry Disability Index, Neck Disability Index, Rand-36, PROMIS Pain Impact, NRS Back and Leg Pain, Scoliosis Research Society-22r, and Global Health. Methods: This study compared explained variance in QOL outcomes in demographic and medical versus lifestyle and attitudinal factors. Demographic and medical factors included age, gender, body mass index, and co-morbidities. Lifestyle factors included exercise and commuting practice. Attitudinal factors related to social connectedness: giving and receiving emotional support, feeling overwhelmed by others’ needs, helping orientation, and general helping behaviors. Regression analyses estimated explained variance. Patient groups differed in most factors evaluated, so the regression analyses were computed separately by group. R2 statistics were characterized as null, small (0.02), medium (0.15), and large (0.35) effect sizes (ES), and proportions were compared for the medical/demographic versus lifestyle/attitudinal factors by group. Results: Similar proportions of variance were explained by demographic/medical and lifestyle/attitudinal covariates across groups, with half of effect sizes being small in magnitude and 6% being medium. Lumbar patients tended to have more small effect sizes among lifestyle and attitudinal covariates than among medical/demographic covariates (z = – 1.29, p < 0.10). Similar patterns were found for both generic and disease-specific outcomes. Conclusions: Spine surgery outcome research should investigate lifestyle and attitudinal factors to enhance the personal and salutogenic relevance of the research. Time spent commuting, exercise practice, and social connectedness appear to be relevant factors. A pre-operative evaluation of overweight and smoking status, limited social connectedness, and long daily commutes could alert the surgeon to delay or avoid performing procedures on these patients to avoid poor outcomes.