Introduction Distress related to disease burden has been defined and described among people with chronic diseases including diabetes and cancer. In these populations, disease‐specific distress is associated with health outcomes. Haemophilia‐related distress is less understood. Aim To identify qualitative features of haemophilia‐related distress among affected adults to ultimately inform the creation of a measurement tool. Methods Adults with haemophilia A or B associated with a large haemophilia treatment centre in the south‐eastern U.S. were recruited to participate in this qualitative study. Fifteen participants completed semi‐structured telephone interviews. Interviews lasted 1‐2 hours and explored experiences of distress related to various aspects of haemophilia. Interviews were audio taped, transcribed and coded using NVIVO, software for organizing, managing and analysing qualitative data. Coding was deductive and inductive, and the analysis was thematic. Results Haemophilia‐related distress was broadly related to feelings of isolation and vulnerability which incorporated health system factors, physical functioning, caretaker roles and psychological considerations. Specific features associated with haemophilia‐related distress included lack of trust in the knowledge of haemophilia and care provided by staff in community healthcare settings, concerns about the future such as health insurance access and ageing/disability, long‐standing feelings of being different from others and feeling like an outsider, treatment burdens and fear of acute bleeds. Protective factors included supportive relationships with family, friends and haemophilia care teams through which participants received practical and emotional support. Conclusion Features of haemophilia‐related distress were identified. Results will facilitate distress measurement and intervention efforts to reduce distress in adults with haemophilia.
Introduction In patients with haemophilia, general psychological distress as measured by the National Comprehensive Cancer Network (NCCN) distress thermometer has been associated with pain, disability and increased healthcare utilization. Aims To develop and validate a measure of haemophilia‐related distress. Methods After qualitative interviews, the Hemophilia‐Related Distress Questionnaire (HRDq) was developed. To validate the HRDq, adults (≥18 years) with haemophilia were enrolled, reported demographic and clinical information, and completed the HRDq and other questionnaires that measured similar constructs. Analysis included factor analysis and assessment of internal consistency using Cronbach's α, convergent validity using Pearson's correlation coefficient, and discriminant validity by comparing subgroups of patients. Test‐retest reliability was assessed using an intraclass correlation coefficient (ICC). Results Among 130 enrolled participants, 126 (median age=32.7 years) completed the 24 item HRDq in a median time of 5.4 minutes with overall HRDq scores ranging from 2 to 83 (median score=31.5; higher scores indicating higher distress). Assessment of convergent validity demonstrated a strong correlation (ρ>.60) of the HRDq total score with the NCCN Distress Thermometer, Haem‐A‐QoL total Score, and PROMIS‐29 Profile social role domain and a mild to moderate correlation with all other questionnaire domains (.3‐.59, p < .05). Distress was higher among those who had less education, were not employed, and were disabled and was not significantly different among those with severe compared with non‐severe disease. Assessment of test‐retest reliability demonstrated an ICC value of .84 (95% CI .71‐.91) for the total score. Conclusions The HRDq demonstrates good internal consistency, construct and discriminant validity, and retest reliability with a low responder burden.
Ventilator-related pneumonia is costly not only in terms of treatment, equipment, and length of stay but also in terms of patient morbidity and mortality. From October 1995 through March 1996 an increase in ventilator-related pneumonia cases, of which 83% were caused by methicillin-resistant Staphylococcus aureus (MRSA), was noted at a Veterans Affairs medical center. A multidisciplinary team based on the TQI model and using TQI tools, methodology, and principles of problem solving was subsequently formed to look into ventilator-related pneumonia. The team's data collection and analysis efforts identified numerous opportunities for improvement. The primary outcome has been a decrease in the incidence of ventilator-related pneumonia that has resulted in substantial cost savings.
Introduction: In chronic diseases such as diabetes and cancer, disease-related distress is known to impact disease management and health outcomes (Barry et al. J Health Psychol 2019). We sought to develop and validate an instrument to measure hemophilia-related distress (HRD). Methods: Using themes raised during qualitative interviews, questions were written to assess HRD. Questions were revised after review by clinicians and patient focus groups. The final formatted HRD instrument comprised 24 Likert scale questions (response level 0-5) plus a numerical rating of current distress on a 1-10 scale. The HRD total score is the sum of all domain scores and could range from 0-120 with lower scores indicating less HRD. Adults (≥18 years) with hemophilia receiving care at one of two hemophilia treatment centers were recruited to participate in the validation study. After informed consent, participants reported demographic and clinical information then completed the HRD instrument and questionnaires that measured characteristics similar to HRD including: the National Cancer Center Network (NCCN) Distress Thermometer, Kessler 6+ (K6), Patient Health Questionnaire (PHQ-9), Brief Pain Inventory (BPI), 5-level EuroQol-5D (EQ-5D-5L), Haem-A-Qol, Work Productivity and Activity Impairment Questionnaire plus Classroom Impairment (WPAI), and PROMIS-29. Analysis included factor analysis and assessment of internal consistency using Cronbach's α, construct validity using Pearson's correlation coefficient and discriminant validity by comparing subgroups of patients. A subset of participants electronically completed the HRD instrument a second time within 7 days of initial assessment. Test-retest reliability was assessed using an interclass correlation coefficient (ICC). Results: Among 130 enrolled participants, 126 completed the HRD instrument in a median time of 5.4 minutes (Q1;Q3 3.5;14.4) with overall HRD scores ranged from 2-83 (median=31.5). Subject characteristics are shown in table 1. Factor analysis of 1-5 domains was undertaken with final selection of a 4-domain instrument (RMSEA 0.057 [90% CI 0.041,0.072]; CFI 0.97). The 4 domains are (# of items, Cronbach's α): Hemophilia Management Concerns (7 items, 0.81); Financial Concerns (3 items, 0.81); Perceived Self-efficacy (3 items, 0.79); Daily Function Concerns (7 items, 0.85). Assessment of convergent validity (table 2) demonstrated a moderate correlation (>0.60) of the HRD total score with the NCCN Distress Thermometer, Haem-A-Qol total Score, and PROMIS social role domain. The HRD 0-10 scale correlated well with NCCN Distress Thermometer, PHQ-9 score, EQ-5D Index score, Haem-A-Qol total score, PROMIS anxiety, depression, and pain interference domains. Domain 4 (Daily Function Concerns) was well correlated with Haem-A-Qol total score as well as physical health and view of self domains, WPAI total activity impairment, and PROMIS pain interference. The HRD total score and domains 1-4 were mild to moderately correlated with the K6 measure of general psychological distress (0.3-0.54, p< 0.05). Distress was higher among those with less education than standard college or graduate degree (median score 36 vs. 23, p=0.018), not employed (median total score 42 vs 26, p=0.002), and disabled (median score 43 vs 30, p=0.010). The total score was not significantly different among those with severe hemophilia compared with non-severe disease. However, domain 1 (hemophilia management concerns) was higher among those with non-severe disease (median 9 vs 6, p=0.033). Test-retest reliability was assessed in 38 subjects. ICC values were 0.84 (95% CI 0.71-0.91) for the total score and 0.56 (95% CI, 0.30-0.75), 0.51 (95% CI 0.40-0.81), 0.67 (95% CI 0.45-0.81) and 0.72 (95% CI 0.53-0.85) for domains 1-4 respectively. Conclusions: The HRD instrument measures the subjective emotional state associated with chronic management of hemophilia. The instrument demonstrates good internal consistency, construct and discriminant validity, and retest-reliability with a low responder burden. Interestingly HRD was not greater among those with severe disease, which in combination with results from analysis of domain 1, may reflect greater unease and less mastery in managing their disease among adults with non-severe hemophilia. Future studies can explore how HRD is associated with disease management and outcomes and healthcare utilization. Disclosures Kempton: Novo Nordisk: Research Funding; Octapharma: Honoraria; Genentech: Honoraria; Spark Therapeutics: Honoraria. Buckner:Genentech: Consultancy; Spark Therapeutics: Consultancy; Shire: Consultancy; Kedrion: Consultancy; Pfizer: Consultancy; Novo Nordisk: Consultancy.
Children use their memories of healthcare experiences to navigate subsequent visits. The purpose of this exploratory study was to examine young adults’ (N = 343) memories of childhood medical experiences, how support from parents and the medical team influenced these memories, and how memories of pediatric experiences influence opinions about healthcare as an adult. The participants remembered having mild anxiety about childhood medical visits, feeling parents and the medical team were helpful with coping, and thinking the medical staff were supportive/friendly. Participants remembered having a relationship with their healthcare providers and the healthcare providers communicating with them as a child. The adults reported their current opinion and healthcare use was influenced by childhood healthcare experiences. These findings highlight the importance of parents and the medical team during pediatric healthcare visits. Also, visits during childhood were found to influence use of healthcare as an adult, highlighting the need for positive pediatric experiences, both at the doctor and dentist.
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