Browsing by Subject "Patient perspective"

Now showing 1 - 3 of 3
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    Disease burden and social impact of pediatric chronic nonbacterial osteomyelitis from the patient and family perspective
    (Biomed Central, 2018-12-14) Oliver, Melissa; Lee, Tzielan C.; Halpern-Felsher, Bonnie; Murray, Elizabeth; Schwartz, Rebecca; Zhao, Yongdong; Pediatrics, School of Medicine
    BACKGROUND: Chronic nonbacterial osteomyelitis (CNO) is an autoinflammatory bone disorder that if left untreated can result in bone destruction and severe continuing pain due to persistent inflammation. The impact this chronic disease has on the daily lives of affected children and their families is not well known. The purpose of this study is to understand the disease burden and socioeconomic and psychological impact of CNO from the patients' and families' perspectives and identify areas of improvement for patient care and reduced disease burden based on patients' and families' responses. METHODS: Participants were invited through a social media platform group and at clinic visits at Stanford Children's Health. An online survey was administered to patients with a diagnosis of CNO made at < 22 years of age and/or the parent/guardian of a patient with CNO diagnosis made at < 22 years of age. RESULTS: There was a total of 284 survey participants. The median age at CNO diagnosis was 10 years (range 2-22+). Median time from first CNO symptom to diagnosis was 2 years. Antibiotics were used in 35% of patients prior to CNO diagnosis; of these, 24% received antibiotics for greater than 6 months. Between 25 and 61% reported a negative effect of CNO on relationships, school/work performance, or finances; and 19-50% reported effects on psychosocial well-being. The majority agreed patients' performance with daily tasks and hobbies was challenged by pain, fatigue and physical limitation related to CNO. CONCLUSIONS: Patients with CNO experienced on average a 2-year delay in diagnosis and receiving effective treatments. At least 25% reported problems with relationships, school, work, finances and well-being due to CNO. Recognition of these challenges emphasizes the need to increase awareness of this disease and address the socioeconomic stressors and mental health issues in order to provide optimal care of children with CNO.
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    Evolving Attitudes Toward Numeric Pain Assessment Among Patients with Hypermobile Ehlers-Danlos Syndrome: A Qualitative Interview Study
    (Oxford University Press, 2023) Halverson, Colin M. E.; Kroenke, Kurt; Penwell, Heather L.; Francomano, Clair A.; Medicine, School of Medicine
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    Social media use by patients with hypermobile Ehlers–Danlos syndrome
    (Wiley, 2024) Halverson, Colin M. E.; Doyle, Tom A.; Vershaw, Samantha; Medicine, School of Medicine
    Background: Patients with uncommon genetic conditions often face limited in-person resources for social and informational support. Hypermobile Ehlers-Danlos syndrome (hEDS) is a rare or underdiagnosed hereditary disorder of the connective tissue, and like those with similar diseases, patients with hEDS have begun to turn to social media in search of care and community. The aims of our study were to understand the usage habits and perceptions of utility of social media use for patients with hEDS in order to formulate suggestions for how clinicians may best engage these and similar patient populations about this topic. Methods: We conducted both a quantitative survey and qualitative interviews with patients who had received a robust clinical diagnosis of hEDS. Results: Twenty-four individuals completed the initial survey, and a subset of 21 of those participants completed an interview. Through thematic analysis, we identified four primary themes related to their experience with social media: (1) befriending others with their disease, (2) seeking and vetting information, (3) the risks and downsides of social media use, and (4) the desire for clinicians to discuss this topic with them. Conclusion: We conclude by proposing five suggestions that emerge empirically from our data. These proposals will help clinicians engage their patients regarding social media use in order to promote its potential benefits and circumvent its potential harms as they pursue support for their hereditary condition.