Health-Related Quality of Life in Patients with Haemophilia and Its Association with Depressive Symptoms: A Study in Croatia and Slovenia.

BACKGROUND: There are only a few studies in patients with haemophilia (PWH) that examined both quality of life and depressive symptoms, with only few studies examining their association. Aim of this study was to examine the association between depressive symptoms and health-related quality of life (HRQoL) in PWH from Croatia and Slovenia. SUBJECTS AND METHODS: A total of 112 adult PWH on prophylactic (73%) or on-demand (27%) treatment were included in the study (median age 46 years, range 18-73 years). Depressive symptoms were assessed with BDI-II, HRQoL with SF-36v2, demographic and socioeconomic data were collected using a questionnaire, and clinical data were obtained from medical records. RESULTS: All HRQoL scores were significantly negatively correlated with BDI-II in the -0.42 to -0.70 range (all p<0.05). Socio-demographic and clinical variables explained 28-51% of HRQoL variance scores. Depressive symptoms explained additional variance for six HRQoL domain scores, with incremental variance being larger for mental domain scores (ranging between 10-27%), and for Mental Component Summary score (26%). CONCLUSIONS: This study's findings support that having depressive symptoms is associated with HRQoL of PWH, more so in the mental health than in the physical health domains.

Association between reported medication adherence and health-related quality of life in adult patients with haemophilia.

Background Medication adherence is an important issue, not just health-related, for patients with haemophilia. Poor medication adherence to long-term therapies limits the potential of effective treatments to improve patients' health-related quality of life. Objective The aim of this study was to investigate the association of reported medication adherence and health-related quality of life in patients with haemophilia. Setting Data were collected from patients at University Hospital Centre Zagreb, Croatia and at University Medical Centre Ljubljana, Slovenia. Method Adult male patients with severe or moderate haemophilia receiving prophylactic treatment were eligible for the study. Main outcome measure Implementation phase of medication adherence was assessed with the self-reported VERITAS-Pro instrument and health-related quality of life with SF-36v2. Results A total of 82 participants were included in the study (median age was 44.50, range 18-73 years). The majority of our participants reported being adherent to medication (83%). Participants showed better health in the mental health domains and Mental Component Summary than in the physical health domains and Physical Component Summary. After controlling for demographic, socioeconomic and clinical predictors, better reported medication adherence explained an additional 4-6% of better health variance in Bodily Pain and Social Functioning domains and Mental Component Summary. Conclusion We found that reported medication adherence can contribute to better health-related quality of life in patients with haemophilia. Since life with a chronic condition is demanding, it is an important finding that medication adherence to replacement therapy can improve life conditions for patients with haemophilia.

Depressive symptoms and adherence to prophylaxis in patients with haemophilia from Croatia and Slovenia.

INTRODUCTION: Adherence to a prophylactic therapy is obligatory to prevent bleeding in patients with haemophilia. It has already been recognized that depression is associated with treatment adherence. AIM: The aim of this study was to examine the prevalence of depressive symptoms in adults with haemophilia using an instrument designed or validated for diagnosing or screening for depression and to investigate the association of symptoms of depression with nonadherence to prophylactic therapy in patients from two East European countries. METHODS: Adult patients with severe or moderate haemophilia receiving prophylaxis were eligible for the study. Depressive symptoms were assessed with BDI-II, adherence with VERITAS-Pro, demographic and socioeconomic data were collected using a questionnaire, and clinical data were obtained from medical records. RESULTS: Final sample included 81 participants (median age was 45 years, range 18-73 years). There were 9 (11%) participants with scores on BDI-II above 14 points, the cut-off score for depressive symptomatology. In general, participants were adherent. However, there were 14 (17%) participants who had scores above 57 points, the cut-off score for nonadherence. There was an association between having depressive symptoms and being nonadherent, and depressive symptoms explained additional variance in adherence after controlling for sociodemographic, psychosocial and clinical characteristics. CONCLUSION: Since there is an association between depressive symptoms and nonadherence, it would be beneficial for both patients and the public health system for screening for depressive symptoms to be included as a part of the treatment protocol.

Missed Care from the Patient's Perspective - A Scoping Review.

Missed care, defined as any aspect of patient care that is omitted or delayed, is receiving increasing attention. It is primarily caused by the imbalance between patients' nursing care needs and the resources available, making it an ethical issue that challenges nurses' professional and moral values. In this scoping review, conducted using the five-stage approach by Arksey and O'Malley, our aim is to analyze the patients' perspective to missed care, as the topic has been mainly examined from nurses' perspective. The search was conducted in April 2019 in PubMed, CINAHL, PsycINFO, Web of Science, ProQuest and Philosophers Index databases using the following terms: omitted care, unfinished nursing care, care undone, care unfinished, missed care, care left undone, task undone and implicit rationing with no time limitation. The English-language studies where missed care was examined in the nursing context and had patients as informants on patient-reported missed care or patients' perceptions on nurse-reported missed care were selected for the review. Thirteen studies were included and analyzed with thematic content analysis. Twelve studies were quantitative in nature. Patients were able to report missed care, and mostly reported missed basic care, followed by missed communication with staff and problems with timeliness when they had to wait to get the help they needed. In statistical analysis, missed care was associated with patient-reported adverse events and patients' perceptions of staffing adequacy, and in patients' perception, it was mainly caused by lack of staff and insufficient experience. Furthermore, patients' health status, as opposed to gender, predicted missed care. The results concerning patients' age and education level were conflicting. Patients are able to identify missed care. However, further research is needed to examine patient-perceived missed care as well as to examine how patients identify missed care, and to get a clear definition of missed care.

Psychometric properties of the Culig's questionnaire.

BACKGROUND: Perseverance in applying the therapy is an important determinant of its success, but evaluation of perseverance is extremely complex, and therefore, alternative method of processing the results by the Culig's questionnaire of perseverance is presented. SUBJECTS AND METHOD: Psychometric properties of the questionnaire on a sample of 225 examinees have been calculated and the factor structure of indicators that make up the scale is presented. RESULTS: Psychometric properties calculated in an alternative way are significantly better than the original, especially when it comes to reliability and representativeness of the questionnaire. CONCLUSION: This method of data analysis raises the possibility of multivariate data processing on the Culig's questionnaire, which is important for further research.