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Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support.

ABSTRACT: BACKGROUND: Patients with rare diseases such as congenital hypogonadotropic hypogonadism (CHH) are dispersed, often challenged to find specialized care and face other health disparities. The internet has the potential to reach a wide audience of rare disease patients and can help connect patients and specialists. Therefore, this study aimed to: (i) determine if web-based platforms could be effectively used to conduct an online needs assessment of dispersed CHH patients; (ii) identify the unmet health and informational needs of CHH patients and (iii) assess patient acceptability regarding patient-centered, web-based interventions to bridge shortfalls in care. METHODS: A sequential mixed-methods design was used: first, an online survey was conducted to evaluate health promoting behavior and identify unmet health and informational needs of CHH men. Subsequently, patient focus groups were held to explore specific patient-identified targets for care and to examine the acceptability of possible online interventions. Descriptive statistics and thematic qualitative analyses were used. RESULTS: 105 male participants completed the online survey (mean age 37?±?11, range 19-66 years) representing a spectrum of patients across a broad socioeconomic range and all but one subject had adequate healthcare literacy. The survey revealed periods of non-adherence to treatment (34/93, 37%) and gaps in healthcare (36/87, 41%) exceeding one year. Patient focus groups identified lasting psychological effects related to feelings of isolation, shame and body-image concerns. Survey respondents were active internet users, nearly all had sought CHH information online (101/105, 96%), and they rated the internet, healthcare providers, and online community as equally important CHH information sources. Focus group participants were overwhelmingly positive regarding online interventions/support with links to reach expert healthcare providers and for peer-to-peer support. CONCLUSION: The web-based needs assessment was an effective way to reach dispersed CHH patients. These individuals often have long gaps in care and struggle with the psychosocial sequelae of CHH. They are highly motivated internet users seeking information and tapping into online communities and are receptive to novel web-based interventions addressing their unmet needs.

SUBMITTER: Dwyer AA

PROVIDER: S-EPMC4059885 | biostudies-other | 2014

REPOSITORIES: biostudies-other

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Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support.

Dwyer Andrew A AA Quinton Richard R Morin Diane D Pitteloud Nelly N

Orphanet journal of rare diseases 20140611

<h4>Background</h4>Patients with rare diseases such as congenital hypogonadotropic hypogonadism (CHH) are dispersed, often challenged to find specialized care and face other health disparities. The internet has the potential to reach a wide audience of rare disease patients and can help connect patients and specialists. Therefore, this study aimed to: (i) determine if web-based platforms could be effectively used to conduct an online needs assessment of dispersed CHH patients; (ii) identify the ...[more]

PMID: 24915927

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Project description:BackgroundThe current opioid crisis in the United States impacts broad population groups, including pregnant women. Opioid use during pregnancy can affect the health and wellness of both mothers and their infants. Understanding women's efforts to self-manage opioid use or misuse in pregnancy is needed to identify intervention points for improving maternal outcomes.ObjectiveThis study aims to identify the characteristics of women in an online health community (OHC) with opioid use or misuse during pregnancy and the self-management support needs of these mothers.MethodsA total of 200 web posts by pregnant women with opioid use participating in an OHC were double coded. Concepts and their thematic connections were identified through an inductive process until theoretical saturation was reached. Statistical tests were performed to identify patterns.ResultsThe majority of pregnant women (150/200, 75.0%) in the OHC exhibited signs of misuse, and 62.5% (125/200) of the participants were either contemplating or pursuing dosage reduction. Self-managed withdrawal was more common (P<.001) than professional treatment among the population. A total of 5 themes of self-management support needs were identified as women sought information about the potential adverse effects of gestational opioid use, protocols for self-managed withdrawal, pain management safety during pregnancy, hospital policies and legal procedures related to child protection, and strategies for navigating offline support systems. In addition, 58.5% (117/200) of the pregnant women expressed negative emotions, of whom only 10.2% (12/117) sought to address their emotional needs with the help of the OHC.ConclusionsOHCs provide vital self-management support for pregnant women with opioid use or misuse. Women pursuing self-managed dosage reduction are prone to misinformation and repeated relapses, which can result in extreme measures to avoid testing positive for drug use at labor. The study findings provide evidence for public policy considerations, including universal screening of substance use for pregnant women, emphasis on treatment rather than legal punishment, and further expansion of the Drug Addiction Treatment Act waiver training program. The improvement of web-based platforms that can organize geo-relevant information, dispense clinically validated withdrawal schedules, and offer structured peer support is envisioned for harm reduction among pregnant women who opt for self-management of opioid misuse.

Project description:BackgroundeHealth tools have the potential to meet the mental health needs of individuals who experience barriers to accessing in-person treatment. However, most users have less than optimal engagement with eHealth tools. Coaching from peer specialists may increase their engagement with eHealth.ObjectiveThis pilot study aims to test the feasibility and acceptability of a novel, completely automated web-based system to recruit, screen, enroll, assess, randomize, and then deliver an intervention to a national sample of military veterans with unmet mental health needs; investigate whether phone-based peer support increases the use of web-based problem-solving training compared with self-directed use; and generate hypotheses about potential mechanisms of action for problem-solving and peer support for future full-scale research.MethodsVeterans (N=81) with unmet mental health needs were recruited via social media advertising and enrolled and randomized to the self-directed use of a web-based problem-solving training called Moving Forward (28/81, 35%), peer-supported Moving Forward (27/81, 33%), or waitlist control (26/81, 32%). The objective use of Moving Forward was measured with the number of log-ins. Participants completed pre- and poststudy measures of mental health symptoms and problem-solving confidence. Satisfaction was also assessed post treatment.ResultsAutomated recruitment, enrollment, and initial assessment methods were feasible and resulted in a diverse sample of veterans with unmet mental health needs from 38 states. Automated follow-up methods resulted in 46% (37/81) of participants completing follow-up assessments. Peer support was delivered with high fidelity and was associated with favorable participant satisfaction. Participants randomized to receive peer support had significantly more Moving Forward log-ins than those of self-directed Moving Forward participants, and those who received peer support had a greater decrease in depression. Problem-solving confidence was associated with greater Moving Forward use and improvements in mental health symptoms among participants both with and without peer support.ConclusionsEnrolling and assessing individuals in eHealth studies without human contact is feasible; however, different methods or designs are necessary to achieve acceptable participant engagement and follow-up rates. Peer support shows potential for increasing engagement in web-based interventions and reducing symptoms. Future research should investigate when and for whom peer support for eHealth is helpful. Problem-solving confidence should be further investigated as a mechanism of action for web-based problem-solving training.Trial registrationClinicalTrials.gov NCT03555435; http://clinicaltrials.gov/ct2/show/NCT03555435.

Project description:BackgroundGlobally, 1 in 3 adults live with multiple chronic conditions. Thus, effective interventions are needed to prevent and manage these chronic conditions and to reduce the associated health care costs. Teaching effective self-management practices to people with chronic diseases is one strategy to address the burden of chronic conditions. With the increasing availability of and access to the internet, the implementation of web-based peer support programs has become increasingly common.ObjectiveThe purpose of this scoping review is to synthesize existing literature and key characteristics of web-based peer support programs for persons with chronic conditions.MethodsThis scoping review follows the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) extension for scoping reviews guidelines. Studies were identified by searching MEDLINE, CINAHL, Embase, PsycINFO, and the Physiotherapy Evidence Database. Chronic diseases identified by the Public Health Agency of Canada were included. Our review was limited to peer support interventions delivered on the web. Peers providing support had to have the chronic condition that they were providing support for. The information abstracted included the year of publication, country of study, purpose of the study, participant population, key characteristics of the intervention, outcome measures, and results.ResultsAfter duplicates were removed, 12,641 articles were screened. Data abstraction was completed for 41 articles. There was a lack of participant diversity in the included studies, specifically with respect to the conditions studied. There was a lack of studies with older participants aged ≥70 years. There was inconsistency in how the interventions were described in terms of the duration and frequency of the interventions. Informational, emotional, and appraisal support were implemented in the studied interventions. Few studies used a randomized controlled trial design. A total of 4 of the 6 randomized controlled trials reported positive and significant results, including decreased emotional distress and increased health service navigation, self-efficacy, social participation, and constructive attitudes and approaches. Among the qualitative studies included in this review, there were several positive experiences related to participating in a web-based peer support intervention, including increased compassion and improved attitudes toward the individual's chronic condition, access to information, and empowerment.ConclusionsThere is limited recent, high-level evidence on web-based peer support interventions. Where evidence exists, significant improvements in social participation, self-efficacy, and health-directed activity were demonstrated. Some studies incorporated a theoretical framework, and all forms of peer support-emotional, informational, and appraisal support-were identified in the studies included in this review. We recommend further research on web-based peer support in more diverse patient groups (eg, for older adults and chronic conditions outside of cancer, cardiovascular disease, and HIV or AIDS). Key gaps in the area of web-based peer support will serve to inform the development and implementation of future programs.

Project description:Purpose/objectiveThe purpose of this study was to assess the frequency of unmet needs of carers among a convenience sample of carers, and the participant factors associated with unmet needs, to inform the development of interventions that will support a range of caregivers. The aims of this study were to: (1) assess the most frequently reported moderate-high unmet needs of caregivers; and (2) examine the age, gender, condition of the care recipient, and country variables associated with types of unmet needs reported by informal caregivers.Research method/designAn online cross-sectional survey among informal caregivers in English-speaking countries was conducted. Self-reported unmet needs were assessed using an unmet needs measure with the following five unmet needs domains: (1) Health information and support for care recipient; (2) Health service management; (3) Communication and relationship; (4) Self-care; and (5) Support services accessibility. Informal caregivers were asked "In the last month, what was your level of need for help with…", and the ten highest ranked moderate-high unmet needs presented as ranked proportions. Logistic regression modelling examined the factors associated with types of unmet needs.ResultsOverall, 457 caregivers were included in the final analysis. Seven of the ten highest ranked unmet needs experienced by caregivers in the last month were in the Self-care domain, including "Reducing stress in your life" (74.1%). Significant associations were found between younger caregiver age (18-45 years) and reporting moderate-high unmet needs in Health Information and support for care recipient, Health service management, and Support services accessibility (all p's = <0.05).Conclusions/implicationsCaregivers are not experiencing significant differences in unmet needs between countries and caree/care recipient conditions, suggesting that general interventions could be developed to support a range of caregivers across countries. Increased awareness of informal caregivers' unmet needs, particularly for younger caregivers, among health care providers may improve support provision to caregivers.

Dataset Information

Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support.

Publications

Identifying the unmet health needs of patients with congenital hypogonadotropic hypogonadism using a web-based needs assessment: implications for online interventions and peer-to-peer support.

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