Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): Methodology and initial results

Objective: Widowed fathers and their children are at heightened risk for poor coping and maladaptive psychosocial outcomes. This exploratory study is the first to explicitly examine the psychological characteristics of this population of fathers.Method: Some 259 fathers (mean age ¼ 46.81; 90% Caucasian) with dependent-age children and whose wives had died from cancer within the previous five years completed a web-based survey that consisted of demographic questions, the Center for Epidemiologic Studies Depression Scale (CES -D), the Texas Inventory of Grief -Revised (TRIG -R), the Psychological Adaptation Scale (PAS), the Kansas Parental Satisfaction Scale (KPSS), and items assessing perceived parental efficacy.Results: Fathers were found to have elevated depressive (CES -D mean ¼ 22.6) and grief (TRIG -R mean ¼ 70.3) symptomatology, low adaptation (PAS mean ¼ 3.2), and high levels of stress related to their parenting role. They reported being satisfied with their parenting (KPSS mean ¼ 15.8) and having met their own parental expectations. Multivariate analyses revealed an association between father's age and depression ( p ¼ ,0.01), with younger fathers reporting greater depressive symptoms. Psychological adaptation was positively correlated with being in a romantic relationship ( p ¼ 0.02) and age of oldest child ( p ¼ 0.02).Significance of results: The results of our exploratory study suggest that, while widowed fathers perceive themselves as meeting their parental responsibilities, it comes at a substantial psychological cost, with particularly high stress related to being a sole parent. These findings may help guide interventions for this neglected population and underscore the importance of developing targeted therapies and research protocols to address their needs.

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“…Surveys of similar construction have been employed elsewhere in the literature (e.g., Long et al, 2012). Our survey consisted of three modules.…”

Section: Methodsmentioning

confidence: 99%

Overlooked and underserved: Widowed fathers with dependent-age children

et al. 2014

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“…There were two methods of patient recruitment. Patients with a confirmed CD diagnosis by clinical history, examination, and appropriate endoscopy, radiology, and endoscopy, per ECCO Statement 2B [23], were recruited on a consecutive basis when presenting for follow-up, or for acute (nonhospitalized) care, at the OutPatient Gastroenterology Departments of five participating university-affiliated tertiary care hospitals located in the north, south, east and west of Israel (Rambam Health Campus, Tel Aviv Medical Center, Soroka Medical Center, Shaare Zedek Medical Center, Tel Hashomer Medical Center). These patients were provided the option of completing the questionnaires on paper or online (one option only) in their own time at home.…”

Section: Cohortmentioning

confidence: 99%

Effect of psychosocial stressors on patients with Crohn’s disease: threatening life experiences and family relations

Slonim‐Nevo¹,

Sarid²,

Friger

et al. 2016

European Journal of Gastroenterology &Amp; Hepatology

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“…One study showed that families dealing with rare diseases are active in social media communities, 10 and a few reports demonstrate the use of social media to recruit subjects for broad population-based studies, studies of more common diseases, or small studies of less common diseases. [11][12][13][14] To our knowledge, only 1 study has reported using primarily social media in a prospective study of a very rare disease: an online support group of 12 individuals was accessed to obtain consent for a study of spontaneous coronary artery dissection. 15 By contrast, our study demonstrates the feasibility of using social media to reach a significantly larger number of participants via multiple online communities using only online resources.…”

Section: Lessons Learned and Future Possibilitiesmentioning

confidence: 99%

Social Media Methods for Studying Rare Diseases

Stringer²,

et al. 2014

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For pediatric rare diseases, the number of patients available to support traditional research methods is often inadequate. However, patients who have similar diseases cluster "virtually" online via social media. This study aimed to (1) determine whether patients who have the rare diseases Fontan-associated protein losing enteropathy (PLE) and plastic bronchitis (PB) would participate in online research, and (2) explore response patterns to examine social media' s role in participation compared with other referral modalities. A novel, internetbased survey querying details of potential pathogenesis, course, and treatment of PLE and PB was created. The study was available online via web and Facebook portals for 1 year. Apart from 2 study-initiated posts on patient-run Facebook pages at the study initiation, all recruitment was driven by study respondents only. Response patterns and referral sources were tracked. A total of 671 respondents with a Fontan palliation completed a valid survey, including 76 who had PLE and 46 who had PB. Responses over time demonstrated periodic, marked increases as new online populations of Fontan patients were reached. Of the responses, 574 (86%) were from the United States and 97 (14%) were international. The leading referral sources were Facebook, internet forums, and traditional websites. Overall, social media outlets referred 84% of all responses, making it the dominant modality for recruiting the largest reported contemporary cohort of Fontan patients and patients who have PLE and PB. The methodology and response patterns from this study can be used to design research applications for other rare diseases. Pediatrics 2014;133:e1345-e1353 AUTHORS:

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Development of an internet-based cohort of patients with inflammatory bowel diseases (CCFA Partners): Methodology and initial results

Abstract: CCFA Partners is a novel e-cohort. Enrollment is ongoing, with surveys twice yearly. CCFA Partners represents a unique resource to study PROs and changes in disease management over time.

Cited by 105 publications

References 25 publications

Overlooked and underserved: Widowed fathers with dependent-age children

Overlooked and underserved: Widowed fathers with dependent-age children

Effect of psychosocial stressors on patients with Crohn’s disease: threatening life experiences and family relations

Social Media Methods for Studying Rare Diseases

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