Developing an educational website for women with endometriosis-associated dyspareunia: A usability and stigma analysis (Preprint)

2021 ◽  
Author(s):  
Abdul-Fatawu Abdulai ◽  
A. Fuchsia Howard ◽  
Paul J Yong ◽  
Heather Noga ◽  
Gurkiran Parmar ◽  
...  
Keyword(s):  
Content Analysis ◽  
Sexual Health ◽  
Video Data ◽  
Think Aloud ◽  
Study Objective ◽  
Usability Problems ◽  
Sexual Pain ◽  
Usability Analysis ◽  
Health Related

BACKGROUND Endometriosis is a chronic condition that affects approximately 10% of women across the globe. Despite its wide prevalence, knowledge of endometriosis symptoms, such as pelvic pain, and treatments remains relatively low. This not only leads to a trivialization of symptoms and delayed diagnosis but fuels myths and misconceptions about pain symptoms. At the same time, the use of online platforms for information seeking is particularly common among people with conditions that are perceived as stigmatizing and difficult to discuss. The Sex, Pain, and Endometriosis Website is an educational resource designed to provide evidence-based information on endometriosis and sexual pain to help people understand the condition, feel empowered, dispel myths, and destigmatize endometriosis-associated sexual pain. OBJECTIVE The study objective was to evaluate the usability of the website and assess for destigmatizing properties of sexual health-related online resources. METHODS We conducted a usability analysis by employing a think-aloud observation, a post-systems usability questionnaire, and follow-up interviews with 12 women with endometriosis. The think-aloud data were analyzed using Kushniruk and Patel’s framework for analyzing usability video data, the questionnaire data were analyzed with descriptive statistics, and the follow-up interview was analyzed using simple content analysis. We also conducted a stigma assessment by analyzing the interview data deductively using a trauma-informed care framework and a content analysis approach. RESULTS Through usability analysis, we found the website to be simple, uncluttered, satisfying, and easy to use. However, 30 minor usability problems related to navigation, website response, comprehension of graphics icons and tabs, understanding content, and mismatch between the website and users' expectations were reported. In our stigma assessment, we found the web content to be non-stigmatizing. Participants suggested ways in which websites could be designed to address stigma including ensuring privacy, anonymity, inclusiveness, and factual and non-judgemental content, as well as providing opportunities for interactive engagement. CONCLUSIONS Overall, participants found the website to be useful, easy to use, and satisfying. The usability problems identified were largely minor and informed the website redesign process. In the context of the limited literature on stigma and website design, this paper offers useful strategies on how sexual health-related websites can be designed to be less stigmatizing and acceptable to individuals with sensitive health issues.

scholarly journals Young Black Gay/Bisexual and Other Men Who Have Sex With Men: A Review and Content Analysis of Health-Focused Research Between 1988 and 2013

2015 ◽  
Vol 11 (5) ◽  
pp. 1388-1405 ◽  
Author(s):  
Ryan M. Wade ◽  
Gary W. Harper
Keyword(s):  
Health Care ◽  
Content Analysis ◽  
Sexual Health ◽  
Psychosocial Functioning ◽  
Care Delivery ◽  
Extensive Literature ◽  
Content Areas ◽  
Health Domains ◽  
Health Related ◽  
Sex With Men

Black young gay, bisexual, and other men who have sex with men (YGBMSM) are at high risk for negative health outcomes, though this population is underrepresented in the health literature. An extensive literature review and content analysis of health-related peer-reviewed articles (1988-2013) was conducted that targeted Black YGBMSM, examining five content areas: sexual health, health care, substance use, psychosocial functioning, and sociostructural factors. A coding sheet was created to collect information on all content areas and related subtopics and computed descriptive statistics. Out of 54 articles, most were published after 2004 ( N = 49; 90.7%) and addressed some aspect of sexual health ( N = 50; 92.6%). Few articles included content on psychosocial functioning, including bullying/harassment, suicide, and racial/ethnic identity. Data on health care delivery/receipt and health insurance were underrepresented; tobacco use and substance abuse were seldom addressed. Important sociostructural factors, including sexual networks and race-based discrimination, were poorly represented. Last, there was a noteworthy deficit of qualitative studies and research exploring intersectional identity and health. This review concludes that studies on Black YGBMSM health places sex at the forefront to the neglect of other critical health domains. More research is needed on the diverse health issues of a vulnerable and underexamined population.

465: Impact of Post-Prostatectomy Urethral Strictures on Urinary and Sexual Health Related Quality of Life

2006 ◽  
Vol 175 (4S) ◽  
pp. 150-151
Author(s):  
Jeffrey S. Montgomery ◽  
Bishoy A. Gayed ◽  
Brent K. Hollenbeck ◽  
Stephanie Daignault ◽  
Martin G. Sanda ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sexual Health ◽  
Health Related Quality ◽  
Urethral Strictures ◽  
Related Quality ◽  
Health Related

Effectiveness of the Chiari Health Index for Pediatrics instrument in measuring postoperative health-related quality of life in pediatric patients with Chiari malformation type I

2020 ◽  
pp. 1-6
Author(s):  
Georgina E. Sellyn ◽  
Alan R. Tang ◽  
Shilin Zhao ◽  
Madeleine Sherburn ◽  
Rachel Pellegrino ◽  
...  
Keyword(s):  
Surgical Intervention ◽  
Type I ◽  
Health Related Quality ◽  
Health Index ◽  
Chiari Malformation Type I ◽  
Related Quality ◽  
Health Related ◽  
Over Time

OBJECTIVEThe authors’ previously published work validated the Chiari Health Index for Pediatrics (CHIP), a new instrument for measuring health-related quality of life (HRQOL) for pediatric Chiari malformation type I (CM-I) patients. In this study, the authors further evaluated the CHIP to assess HRQOL changes over time and correlate changes in HRQOL to changes in symptomatology and radiological factors in CM-I patients who undergo surgical intervention. Strong HRQOL evaluation instruments are currently lacking for pediatric CM-I patients, creating the need for a standardized HRQOL instrument for this patient population. This study serves as the first analysis of the CHIP instrument’s effectiveness in measuring short-term HRQOL changes in pediatric CM-I patients and can be a useful tool in future CM-I HRQOL studies.METHODSThe authors evaluated prospectively collected CHIP scores and clinical factors of surgical intervention in patients younger than 18 years. To be included, patients completed a baseline CHIP captured during the preoperative visit, and at least 1 follow-up CHIP administered postoperatively. CHIP has 2 domains (physical and psychosocial) comprising 4 components, the 3 physical components of pain frequency, pain severity, and nonpain symptoms, and a single psychosocial component. Each CHIP category is scored on a scale, with 0 indicating absent and 1 indicating present, with higher scores indicating better HRQOL. Wilcoxon paired tests, Spearman correlations, and linear regression models were used to evaluate and correlate HRQOL, symptomatology, and radiographic factors.RESULTSSixty-three patients made up the analysis cohort (92% Caucasian, 52% female, mean age 11.8 years, average follow-up time 15.4 months). Dural augmentation was performed in 92% of patients. Of the 63 patients, 48 reported preoperative symptoms and 42 had a preoperative syrinx. From baseline, overall CHIP scores significantly improved over time (from 0.71 to 0.78, p < 0.001). Significant improvement in CHIP scores was seen in patients presenting at baseline with neck/back pain (p = 0.015) and headaches (p < 0.001) and in patients with extremity numbness trending at p = 0.064. Patients with syringomyelia were found to have improvement in CHIP scores over time (0.75 to 0.82, p < 0.001), as well as significant improvement in all 4 components. Additionally, improved CHIP scores were found to be significantly associated with age in patients with cervical (p = 0.009) or thoracic (p = 0.011) syrinxes.CONCLUSIONSThe study data show that the CHIP is an effective instrument for measuring HRQOL over time. Additionally, the CHIP was found to be significantly correlated to changes in symptomatology, a finding indicating that this instrument is a clinically valuable tool for the management of CM-I.

scholarly journals Using Electronic Medical Records and Health Claim Data to Develop a Patient Engagement Score for Patients With Multiple Chronic Conditions: An Exploratory Study

2021 ◽  
Vol 8 ◽  
pp. 237437352098148
Author(s):  
Surachat Ngorsuraches ◽  
Semhar Michael ◽  
Nabin Poudel ◽  
Gemechis Djira ◽  
Emily Griese ◽  
...  
Keyword(s):  
Electronic Medical Records ◽  
Patient Engagement ◽  
Medical Records ◽  
Chronic Conditions ◽  
Claim Data ◽  
Hospital Charges ◽  
Multiple Chronic Conditions ◽  
Health Claim ◽  
Study Objective ◽  
Health Related

The study objective was to (1) develop a statistical model that creates a novel patient engagement score (PES) from electronic medical records (EMR) and health claim data, and (2) validate this developed score using health-related outcomes and charges of patients with multiple chronic conditions (MCCs). This study used 2014-16 EMR and health claim data of patients with MCCs from Sanford Health. Patient engagement score was created based on selected patients’ engagement behaviors using Gaussian finite mixture model. The PES was validated using multiple logistic and linear regression analyses to examine the associations between the PES and health-related outcomes, and hospital charges, respectively. Patient engagement score was generated from 5095 patient records and included low, medium, and high levels of patient engagement. The PES was a significant predictor for low-density lipoprotein, emergency department visit, hemoglobin A1c, estimated glomerular filtration rate, hospitalization, and hospital charge. The PES derived from patient behaviors recorded in EMR and health claim data can potentially serve as a patient engagement measure. Further study is needed to refine and validate the newly developed score.

scholarly journals Randomized controlled study of the impact of a participatory patient care plan among primary care patients with common chronic diseases: a one-year follow-up study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nina Tusa ◽  
Hannu Kautiainen ◽  
Pia Elfving ◽  
Sanna Sinikallio ◽  
Pekka Mäntyselkä
Keyword(s):  
Quality Of Life ◽  
Patient Care ◽  
Usual Care ◽  
Care Plan ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

Abstract Backround Chronic diseases and multimorbidity are common in the ageing population and affect the health related quality of life. Health care resources are limited and the continuity of care has to be assured. Therefore it is essential to find demonstrable tools for best treatment practices for patients with chronic diseases. Our aim was to study the influence of a participatory patient care plan on the health-related quality of life and disease specific outcomes related to diabetes, ischemic heart disease and hypertension. Methods The data of the present study were based on the Participatory Patient Care Planning in Primary Care. A total of 605 patients were recruited in the Siilinjärvi Health Center in the years 2017–2018 from those patients who were followed up due to the treatment of hypertension, ischemic heart disease or diabetes. Patients were randomized into usual care and intervention groups. The intervention consisted of a participatory patient care plan, which was formulated in collaboration with the patient and the nurse and the physician during the first health care visit. Health-related quality of life with the 15D instrument and the disease-specific outcomes of body mass index (BMI), low density lipoprotein cholesterol (LDL-C), hemoglobin A1c (HbA1C) and blood pressure were assessed at the baseline and after a one-year follow-up. Results A total of 587 patients with a mean age of 69 years were followed for 12 months. In the intervention group there were 289 patients (54% women) and in the usual care group there were 298 patients (50% women). During the follow-up there were no significant changes between the groups in health-related quality and disease-specific outcomes. Conclusions During the 12-month follow-up, no significant differences between the intervention and the usual care groups were detected, as the intervention and the usual care groups were already in good therapeutic equilibrium at the baseline. Trial registration ClinicalTrials.gov Identifier: NCT02992431. Registered 14/12/2016

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