Over the last 50 years, the incidence of cervical cancer has dramatically decreased. However, health disparities in cervical cancer screening (CCS) persist for women from racial and ethnic minorities and those residing in rural and poor communities. For more than 45 years, federally funded health centers (HCs) have been providing comprehensive, culturally competent, and quality primary health care services to medically underserved communities and vulnerable populations. To enhance the quality of care and to ensure more women served at HCs are screened for cervical cancer, over eight HCs received funding to support patient-centered medical home (PCMH) transformation with goals to increase CCS rates. The study conducted a qualitative analysis using Atlas.ti software to describe the barriers and challenges to CCS and PCMH transformation, to identify potential solutions and opportunities, and to examine patterns in barriers and solutions proposed by HCs. Interrater reliability was assessed using Cohen's Kappa. The findings indicated that HCs more frequently described patient-level barriers to CCS, including demographic, cultural, and health belief/behavior factors. System-level barriers were the next commonly cited, particularly failure to use the full capability of electronic medical records (EMRs) and problems coordinating with external labs or providers. Provider-level barriers were least frequently cited.

BackgroundEarly diagnosis is an area of great unmet need in lupus. This need and other aspects of care have been reported from a provider's perspective.ObjectivesThe aims of this survey were to understand the experience of patients with diagnostic delays and to assess their access to care and the extent to which their care needs are met.MethodsAn online cross-sectional survey of English-speaking respondents aged ≥18 years with self-reported diagnosis of lupus was conducted across the US in partnership with the Lupus Foundation of America between February and March 2014. Demographic, clinical, and health-related quality of life information was collected, including a series of questions about patients' experiences with diagnostic delays, access to care, and healthcare resource use (HCRU). Satisfaction with care was measured using the LupusPRO care satisfaction scale1, which has a score range of 0 to 100 (with 100 indicating the most satisfaction).ResultsOf the 827 lupus respondents, 97.5% were females and 85.3% white. Lupus respondents took on average 2.1 years (standard deviation [SD], 4.9 years) to seek medical help from the time they first noticed lupus symptoms (95% confidence interval [CI], 1.8 to 2.5 years) and waited an average of 3.5 years (SD, 5.4 years) from the time they first sought medical help for their lupus symptoms until formal diagnosis (95% CI, 3.1 to 3.8 years). A total of 62.8% lupus respondents reported being misdiagnosed before receiving a formal diagnosis of lupus; 75% of them reported being misdiagnosed by a primary healthcare provider. The median number of providers lupus respondents visited before receiving a formal lupus diagnosis was 3 (range, 0-10+). Overall, the rate of HCRU among lupus respondents was relatively high, with fatigue being the most frequently reported cause for seeking out-patient care. Although 90.2% of lupus respondents had healthcare coverage, 21.9% (17.8% of those with coverage and 59.3% of those without) reported that they were unable to get all the prescription medication they needed to manage their lupus and 22.5% (17.4% of those with coverage and 69.1% of those without) reported that they were unable to get all the healthcare they needed including specialist care and hospitalization to treat their lupus. On the LupusPRO “satisfaction with care” domain, lupus respondents reported not being fully satisfied (mean, 61.6; SD, 31.4; 95% CI, 59.5 to 63.8).ConclusionsThe results of this survey indicate a need to address the patients' reported delays and inaccuracies in medical diagnosis, the quality of care, and the access to appropriate medical services for patients with lupus. Increased awareness of lupus symptoms in the general community and clinician education to improve understanding of both diagnostic criteria and medical treatment options are necessary to reduce the burden of illness in lupusReferencesJolly M, Pickard AS, Block JA, et al. Disease-specific patient reported outcome tools for systemic lupus erythematosus. Sem Arthritis Rheum 2012; 42: 56-65.Disclosur...

Background: Achondroplasia, caused by a pathogenic variant in the fibroblast growth factor receptor 3 gene (FGFR3), leads to significant multisystem complications across the lifespan that may affect the health-related quality of life (HRQoL) of individuals and families living with the condition. Methods:The objective of this qualitative study was to describe the HRQoL of children and adolescents with achondroplasia and their caregivers. Thirty-four caregivers and 12 adolescents from the United States and Spain participated in one of eight focus groups or completed an individual interview, which was audiorecorded and transcribed. Thematic analysis of qualitative data was performed to identify commonly occurring themes pertaining to HRQoL.Results: Caregivers and adolescents described challenges with physical functioning and medical complications due to achondroplasia. Key challenges included difficulties performing activities of daily living, issues of accessibility, bullying, or unwanted attention in public, and negative effects on self-esteem. Caregivers were concerned about accessing appropriate medical care for their child, and also reported experiencing financial, relational, and emotional challenges in their families. Achondroplasia also affected individuals and their families in positive ways, including increasing empathy, receiving positive attention, and feeling supported by the achondroplasia community.Conclusions: These findings underscore the importance of regular assessments of HRQoL and the provision of psychosocial support to affected children and families.

Purpose Heart failure (HF) is a common condition that places considerable burden on patients. We aimed to develop a patient-reported outcome (PRO) measure to assess the symptoms and impacts of HF. Methods Phase 1: a targeted literature review, expert interviews, and concept elicitation (CE) interviews with patients with HF (n = 26) were used to develop a conceptual model of the core symptoms and impacts of HF. To capture these concepts, three new fit-for-purpose PRO questionnaires were constructed in accordance with US Food and Drug Administration PRO guidance. Phase 2: three ‘waves’ of cognitive interviews were conducted with patients with HF (n = 28) to validate and refine the questionnaires. Results Three key symptoms—shortness of breath, oedema, and fatigue—were identified across the literature review, expert interviews and CE interviews. Several additional symptoms, cognitive changes and impacts of HF were reported in the CE interviews and included in the conceptual model. A 10-item symptom questionnaire (Heart Failure-Daily Symptom Diary) was constructed; cognitive testing showed that the final PRO measure was easy to understand/complete and relevant to patients with HF, confirming content validity. Two HF impact questionnaires were developed (Assessing Dyspnoea’s Impact on Mobility and Sleep and Heart Failure-Functional Status Assessment), but required refinement to ensure patient understanding. Conclusions Patient input contributed to the development of a PRO instrument for assessing physical and cognitive symptoms important to patients with HF using novel measurement strategies. Inclusion of daily metrics offers differentiation from other qualified instruments and may provide clinical insight for improving lifestyles. Additionally, two draft PRO measures may, after further validation, be useful to assess the impacts of HF.

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