Psychometric Evaluation of the German Version of the Perceived Access to Healthcare Questionnaire in a Sample of Individuals with Rare Chronic Diseases

Access to healthcare is multifaceted and poses significant challenges for individuals with chronic and rare diseases (RDs). This study aimed to conduct a psychometric evaluation of the German version of the Perception of Access to Healthcare Questionnaire (PAHQ) among individuals with RDs. We conducted an evaluation of the PAHQ using a sample of 271 adults with an RD diagnosis. The 31-item instrument underwent evaluation including a comparison of three different confirmatory factor models (CFA). Subsequent steps involved item removal, reliability analysis (computation of Cronbach’s alpha), and analysis of criterion-related validity. The six-factor model showed the best fit to the data and was selected for further examination. Subsequently, six items were removed. Fit indices for the final model were acceptable. Cronbach’s alpha ranged from 0.75 to 0.91 for the six subscales, except for the availability subscale which exhibited the lowest value (0.64). In terms of criterion-related validity, different skills relating to the navigation of access dimensions were significantly correlated with corresponding PAHQ subscales, thus confirming validity. The capacity of the PAHQ to guide targeted interventions and facilitate cross-population comparisons positions it as a valuable instrument for advancing healthcare access research and promoting equitable access to care, particularly for individuals with rare and chronic diseases

2010-2011 Veterans Law Update

Part I will cover updates related directly to veterans\u27 benefits and rights. Part II will focus on updates to rules involving veterans\u27 caregivers and healthcare facilities. Part III will cover proposed rules dealing with veterans\u27 claims and insurance. Part IV will focus on rules and case law covering the VA\u27s procedures and operating regulations

Advancing qualitative rare disease research methodology: a comparison of virtual and in-person focus group formats

Background: Rare disease research is hampered in part by the fact that patients are geographically dispersed. Rare disease patient communities are recognized for their use of the internet to learn about their condition and find peer-to-peer support. As such, web-based technologies offer promise for overcoming geographic barriers in rare disease research for many. Qualitative focus groups (FGs) are a widely used methodology used to understand patients and parents/families ‘lived experience’ and unmet needs is important to improve care for rare diseases. It is unclear if web-enabled (virtual) FGs are comparable to traditional in-person approaches. We conducted in-person (n = 3) and virtual (n = 3) FGs with rare disease patients to determine if virtual FGs produce similar results in-person FGs. Results: Three in-person (n = 33 participants) and three virtual (n = 25 participants) FGs were conducted examining attitudes and beliefs regarding genetic testing and family communication of risk. Participants included 30 males, 18 females, and 10 parents/guardians. Two independent investigators identified excerpts (meaningful sections of text) and coded themes/sub-themes using a codebook. Inter-coder agreement across identified excerpts (n = 530) in both FG formats was 844/875 (96.5%). Two additional investigators reviewed coded excerpts and did not identify additional themes/sub-themes—supporting data saturation across FG formats. Virtual FGs accounted for 303/530 (57.2%) of total excerpts and 957/1721 (55.7%) of all identified themes/sub-themes. Formats were similar in terms of overall number of excerpts (101 ± 7.8 vs. 75.7 ± 18.8, p = 0.26) and themes/sub-themes (319 ± 6.1 vs. 254.7 ± 103.6, p = 0.34) between virtual and in-person FGs. However, virtual FGs had significantly more coded excerpts specifically relating to sensitive/intimate topics including ‘attitudes and beliefs’ (n = 320 vs. n = 235, p < 0.001), ‘information and support’ (n = 184 vs. n = 99, p < 0.001), and ‘family communication’ (n = 208 vs. n = 114, p < 0.001). Conclusions: Virtual FGs yielded similar numbers of coded excerpts compared to traditional in-person FGs. Virtual FGs appear to support the relative anonymity of participants, resulting in richer discussion of highly sensitive, intimate topics. Findings support the validity and methodologic rigor of using web-enabled technologies for conducting FGs in rare diseases

European-South Africa collaboration on the genetic basis of gonadotropin-releasing hormone deficiency in failure to progress through puberty and infertility

Reproductive capacity, the key element for species survival, depends on a complex organ network involving the hypothalamus, pituitary, gonads, and internal and external genitalia. This system is centrally controlled by incompletely understood neuroendocrine mechanisms integrated at the hypothalamic level, whose elucidation is the research focus. Vertebrate reproduction depends entirely upon the neurosecretion of the decapeptide gonadotropin-releasing hormone (GnRH) from less than 4 000 GnRH neurons in the preoptic area of the hypothalamus.http://www.jemdsa.co.za/index.php/JEMDSAhb201

Patient perspectives on nurse-led consultations within a pilot structured transition program for young adults moving from an academic tertiary setting to community-based type 1 diabetes care

Purpose: We aimed to evaluate patient self-management activities, patient perceptions of the therapeutic relationship and satisfaction with nurse-led consultations as part of a structured, pilot program transitioning young adults with type 1 diabetes (T1DM) to adult-oriented community-based practices. Design and Methods: A descriptive, cross-sectional study of patients receiving nurse-led consultations. Patients provided sociodemographic/health information, glycated hemoglobin (HbA1c) measures and completed questionnaires assessing self-management (Revised Self-Care Inventory) and the therapeutic relationship (Caring Nurse-Patient Interaction – short scale). HbA1c values were compared to guideline recommendations. Results: Twenty patients participated. HbA1c was ≤7.5% in 3/14 (21%) and 5/14 (36%) exhibited poor glycemic control (≥9.5%). The greatest concordance for self-care was in relation to insulin therapy (4.5 ± 0.5) while patients reported the lowest adherence to diet recommendations (2.9 ± 0.8). Overall satisfaction with nurse-led consultations was high (4 ± 0.5 out of 5). Patients considered diabetes knowledge and technical competence as very important and were most pleased with the humanistic aspects of nursing care. Respect for privacy was deemed the most important (and most frequently observed) nursing attitude/behavior during consultations. Conclusions: Young adults found the nurse-led consultations with therapeutic education to develop T1DM selfcare skills are an important complement to medical management during transition. Practice Implications: Patient autonomy and privacy should be respected during this developmental period. Nurses taking a humanistic approach towards accompanying and supporting the patient can enhance the therapeutic relationship during transition and promote continuity of care. Transition nurses can use technical competence and therapeutic education to empower patients for self-management

Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study

OBJECTIVES: We engaged patients with systemic sclerosis (SSc) and healthcare professionals to assess electronic health (eHealth) literacy and needs relating to web-based support using internet-based information and communication technologies (ICT). METHODS: We employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional survey in patients (n=101) and professionals (n=47). Next, we conducted three focus groups with patients, family members and professionals (n=17). RESULTS: Of patients, 89.1% used ICT at least weekly for private communication. Patients reported relatively high comprehension of eHealth information ([Formula: see text] =6.7, 95% CI: 6.2 to 7.3, range 1-10), yet were less confident evaluating information reliability ([Formula: see text] =5.8, 95% CI: 5.1 to 6.4) and finding eHealth apps ([Formula: see text] =4.8, 95% CI: 4.2 to 5.4). Patients and professionals reported little experience with web-based self-management support. Focus groups revealed 'considering non-ICT-accessible groups' and 'fitting patients' and professionals' technology' as crucial for acceptability. In relation to understanding/appraising eHealth, participants highlighted that general SSc information is not tailored to individual's disease course. Recommendations included 'providing timely, understandable and safe information' and 'empowering end-users in ICT and health decision-making skills'. Professionals expressed concerns about lacking resources. Patients were concerned about data security and person-centredness. Key eHealth drivers included 'addressing end-user perceptions' and 'putting people at the centre of technology'. CONCLUSIONS: Patients and professionals need education/training to support uptake of eHealth resources. Key elements include guiding patients to timely/reliable information and using eHealth to optimise patient-provider communication. Design that is responsive to end-users' needs and considers individuals with limited eHealth literacy and/or ICT access appears to be critical for acceptability

Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study

BACKGROUND: The Chronic Care Model (CCM) is a longstanding and widely adopted model guiding chronic illness management. Little is known about how CCM elements are implemented in rare disease care or how patients' care experiences relate to health-related quality of life (HRQoL). We engaged patients living with systemic sclerosis (SSc) to assess current care according to the CCM from the patient perspective and their HRQoL. METHODS: We employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional quantitative survey (n = 101) using the Patient Assessment of Chronic Illness Care (PACIC) and Systemic Sclerosis Quality of Life (SScQoL) questionnaires. Next, we used data from individual patient interviews (n = 4) and one patient focus group (n = 4) to further explore care experiences of people living with SSc with a focus on the PACIC dimensions. RESULTS: The mean overall PACIC score was 3.0/5.0 (95% CI 2.8-3.2, n = 100), indicating care was 'never' to 'generally not' aligned with the CCM. Lowest PACIC subscale scores related to 'goal setting/tailoring' (mean = 2.5, 95% CI 2.2-2.7) and 'problem solving/contextual counselling' (mean = 2.9, 95% CI 2.7-3.2). No significant correlations were identified between the mean PACIC and SScQoL scores. Interviews revealed patients frequently encounter major shortcomings in care including 'experiencing organized care with limited participation', 'not knowing which strategies are effective or harmful' and 'feeling left alone with disease and psychosocial consequences'. Patients often responded to challenges by 'dealing with the illness in tailored measure', 'taking over complex coordination of care' and 'relying on an accessible and trustworthy team'. CONCLUSIONS: The low PACIC mean overall score is comparable to findings in patients with common chronic diseases. Key elements of the CCM have yet to be systematically implemented in Swiss SSc management. Identified gaps in care related to lack of shared decision-making, goal-setting and individual counselling-aspects that are essential for supporting patient self-management skills. Furthermore, there appears to be a lack of complex care coordination tailored to individual patient needs

Centerscope

Centerscope, formerly Scope, was published by the Boston University Medical Center "to communicate the concern of the Medical Center for the development and maintenance of improved health care in contemporary society.

Public opinion on energy crops in the landscape: considerations for the expansion of renewable energy from biomass

Public attitudes were assessed towards two dedicated biomass crops – Miscanthus and Short Rotation Coppice (SRC), particularly regarding their visual impacts in the landscape. Results are based on responses to photographic and computer-generated images as the crops are still relatively scarce in the landscape. A questionnaire survey indicated little public concern about potential landscape aesthetics but more concern about attendant built infrastructure. Focus group meetings and interviews indicated support for biomass end uses that bring direct benefits to local communities. Questions arise as to how well the imagery used was able to portray the true nature of these tall, dense, perennial plants but based on the responses obtained and given the caveat that there was limited personal experience of the crops, it appears unlikely that wide-scale planting of biomass crops will give rise to substantial public concern in relation to their visual impact in the landscape