The personal impact of living with a myeloproliferative neoplasm.

OBJECTIVE: The aim of this study is to gain insight into the physical, psychological and social impact of having a myeloproliferative neoplasm (MPN), a rare type of cancer with an often chronic course. METHODS: An online survey was conducted among 455 Dutch MPN patients (62.7% female, age M 63) to explore the impact of the disease by measuring the MPN symptom burden (MPN-SAF TSS) and quality of life (QoL) (EORTC QLQ-C30) and its subscales within a hierarchical QoL model. We examined differences in MPN symptom burden and QoL in relation to sociodemographic and disease-related factors. Hierarchical regression analysis was used to explain variances in QoL. RESULTS: Most patients (97%) experienced MPN-related health complaints, with a significantly higher MPN symptom burden in women (M 31.50) compared to men (M 24.10). Regarding to fatigue and cognitive functioning MPN patients suffered more compared to a reference group of other cancers. MPN subtype or type of treatment did not show significant differences in MPN symptom burden or QoL. However, experiencing side effects, complications or comorbidities significantly negatively affected MPN symptom burden and QoL. 48.8% of patients reported that MPN affected their ability to work. The explained variance in overall QoL was 58%, most importantly by disease progression, comorbidities, MPN symptom burden and role, emotional and social functioning. CONCLUSION: This study revealed that having an MPN has a negative impact on several domains of QoL. Symptom assessment and support should be included in the healthcare management of MPN patients.

Patients' intentions to inform relatives about Type 2 diabetes risk: the role of worry in the process of family risk disclosure.

AIMS: Patients with Type 2 diabetes may play a role as intermediary between medical professionals and at-risk relatives to promote diabetes prevention in their family. This study aimed to further our understanding of factors that influence the decisional process of familial risk disclosure in patients with diabetes. METHODS: In a cross-sectional study, patients with Type 2 diabetes (n = 546) filled in a questionnaire assessing family risk perception, worry, personal beliefs regarding diabetes prevention, diabetes-related family communication, intention and perceived ability to inform relatives about familial risk of diabetes. Data were analysed using hierarchical logistic regression and multiple mediation analyses. RESULTS: Sixty per cent of the patients were willing to inform their relatives about familial diabetes risk; 61% reported high family risk perception and 41% had positive control beliefs with regard to preventive options in relatives. A majority (69%) did not express serious concern about relatives developing diabetes. Worry about relatives, knowing what to tell, whom to notify, and communication about diabetes in general appeared to facilitate family risk disclosure. Unexpectedly, high family risk perception in itself did not significantly increase patients' intentions to inform relatives; rather, risk perception appeared to exert an indirect effect through worry and beliefs about diabetes prevention. CONCLUSIONS: Worry in patients with diabetes appears to be a key factor in the process of family risk disclosure. When professionals guide their patients in this process, they should not only provide risk information, but also address worries and emphasize opportunities for diabetes prevention.

The impact of an organ donation registration information program for high school students in the Netherlands.

In 1998, a new organ donor registration system was implemented in the Netherlands to increase the number of potential donors. A high school education program was developed to prepare adolescents to make an informed decision about organ donation. A post-test only randomised controlled trial was conducted in 39 high schools including 2868 students. Students within schools were randomly allocated to either attend the organ donation education program or not. The impact of the program on students' intention to register their organ donation preference (and determinants thereof) were analysed using multivariate multileveling modelling (MlwiN). The results show that students who were exposed to the education program had more favourable registration intentions (B = .40), were more often willing to be donors (OR = 1.45), and had greater knowledge about (B = 3.84) and more positive social outcome expectations (B = .09) and self-efficacy regarding organ donation registration (B=.22). Lastly, they experienced significantly less negative outcome expectations related to organ donation registration (B = -.15). Students' evaluation of the school-based education program was favourable. The present organ donation registration program proved to be effective in changing determinants of organ donation registration, and a large-scale implementation in the Dutch high school curriculum is planned.

Determinants of surgery related anxiety in cataract patients.

BACKGROUND/AIMS: Not much is known about the relative importance of different determinants of anxiety in cataract patients. This study analysed the predictive value of factors related to surgery induced anxiety. METHODS: In 128 cataract patients, recruited from two hospitals (Medical Centre Maastricht Annadal (MCMA) and Rotterdam Eye Hospital (REH)), state anxiety was assessed at four different time points using the State-Trait Anxiety Inventory (STAI). The following predictive factors of anxiety were measured: trait anxiety, outcome expectancies, doctor-patient relationship, coping strategy, social support, information supply, sociodemographic variables, and previous cataract surgery. Repeated measures ANOVA, t tests, multiple regression analysis, and correlations were used to analyse data. RESULTS: In general patients reported little anxiety. The level of anxiety (scale 1-4) was the highest before surgery, decreased immediately after surgery, and increased again after the postoperative visit. Patients with higher trait anxiety levels (r = 0.41; p<0.01), and women (r = 0.30; p<0.01) reported more anxiety. The REH patients showed lower anxiety scores than the MCMA patients. CONCLUSION: Women and patients with higher trait anxiety were more likely to experience higher levels of state anxiety. Positive outcome expectancies and social support may decrease anxiety.

Cost effectiveness of foldable multifocal intraocular lenses compared to foldable monofocal intraocular lenses for cataract surgery.

AIM: To analyse the cost effectiveness of foldable monofocal intraocular lenses (IOLs) compared to foldable multifocal IOLs in cataract surgery alongside a prospective, multicentre randomised clinical trial (RCT). METHODS: Patients underwent cataract surgery with bilateral monofocal (n = 97) or multifocal (n = 93) IOL implantation. Cost data and patient preferences, using the visual analogue scale (VAS), the time trade-off (TTO), and the standard gamble (SG) technique were obtained preoperatively and postoperatively by structured interviews. The incremental costs (multifocal minus monofocal), mean costs per patient, and differences in preferences were computed. RESULTS: Mean costs for glasses per patient in the monofocal group were 41.67 and in the multifocal group 149.58. The difference in costs between the multifocal and monofocal group was -92.09 and was statistically significant (p = 0.008). No significant differences were found in total costs or in effectiveness between the monofocal and multifocal IOL group. CONCLUSION: The cost effectiveness of multifocal IOLs is reduced to a cost minimisation analysis, because of the inability to demonstrate significant differences in effects. The use of multifocal IOLs in cataract surgery resulted in a significant reduction in costs for patient's postoperative spectacles.

Quality of care from the perspective of the cataract patient: the reliability and validity of the QUOTE-cataract.

BACKGROUND/AIMS: To assess reliability and validity of the QUOTE-cataract, a questionnaire that measures the quality of care from the perspective of cataract patients. METHODS: The QUOTE-cataract was tested in a multicentre study among 540 cataract patients in three different hospitals. Reliability was represented by internal consistency (Cronbach's alpha), and repeatability (intraclass correlation coefficient (ICC)). Validity was evaluated qualitatively and by factor analyses. RESULTS: A strong internal consistency coefficient (0.89), and high repeatability (ICC = 0.76) demonstrated good reliability. Content validity was assured by involvement of patients in the development of the questionnaire. Factor analysis confirmed an underlying taxonomy of generic and disease specific items. CONCLUSION: The QUOTE-cataract has good reliability and provides a valid assessment of quality of care in cataract surgery.

Determinants of patient satisfaction after cataract surgery in 3 settings.

PURPOSE: To analyze the determinants of satisfaction and postoperative visual function after cataract surgery in 3 settings in The Netherlands. SETTING: University Hospital Maastricht (outpatient care), Atrium Medical Center Heerlen (inpatient care), and Medical Center Maastricht Annadal (outpatient care), Maastricht, The Netherlands. METHODS: This cross-sectional study consisted of 150 patients of 50 years and older who had first-eye phacoemulsification with intraocular lens implantation. Data were collected by a written questionnaire. The following parameters were measured: medical outcome, postoperative function, patient satisfaction with medical outcome and hospital care, and overall patient satisfaction. RESULTS: In general, patients were very satisfied (mean score 8.43 on a 10-point scale ranging from 1 = very bad to 10 = excellent). The 3 centers did not differ regarding the patient satisfaction (P =.092). However, postoperative visual function (P =.012), counseling (P =.010), and waiting time (P <.001) were different among the settings. Patient satisfaction with hospital care had a stronger correlation with overall satisfaction than patient satisfaction with the medical outcome (r = 0.669 versus r = 0.543, respectively). CONCLUSIONS: A causal model of patient satisfaction was tested, indicating that satisfaction was related to the patient's preoperative expectations and the quality of care given during the hospital stay and follow-up at the outpatient clinic. This emphasizes the relevance of patient education (to set realistic expectations) and counseling (need for care) by hospital staff in a cataract surgery setting.