Patients and family attitudes about clinical and research sharing of electronic clinical data.

PURPOSE: To access the attitudes of service users about the sharing of health records for research and to foster collaboration between municipal health services and the specialist health services in Norway. METHODS: Members (n ≈ 2000) of the Norwegian mental health service users' organizations (SUO's), ADHD Norway, the Autism Association and the Tourette Association, representing Central Norway, participated in the study, (N = 108, 5.4% response rate). Descriptive statistics were used to evaluate distributions of responses to the questionnaire. RESULTS: Service users reported being aware that municipal health services collaborate with the specialist health service (62%), with mental health care in the specialist health service (57%), and child and adolescent psychiatric services (61%). A large proportion of individuals were aware of the benefits of sharing their health records (93%), have trust in the use of data by health authorities (81%), and were willing to share records to benefit fellow patients (84%). Personal experience (69%) and impressions from mainstream media (55%) had the most influential impact on users' views of the Health Platform, an electronic health communication system. A majority of users had a negative perception of the Health Platform, even though some expect it to become a valuable tool in the future (50%). CONCLUSIONS: Service users are aware of and positive about benefiting others by sharing health records. They trust the health authorities, however, have negative attitudes about the Health Platform, apparently based on personal experiences and media influence. However, service users can see the potential usefulness of the Health Platform in the future.

Fighting the waves; Covid-19 family life interference in a neurodevelopmental disorder-caregiver population.

INTRODUCTION: The current COVID-19 pandemic interferes with family lives across the world, particularly families of children with neurodevelopmental disorders (NDDs) are at a greater risk for being negatively impacted by the pandemic. Together with representatives from this caregiver population the aim was to explore the interference associated with normal family life caused by the COVID-19 pandemic. METHOD: This is a descriptive study using a cross-sectional design. Following a strategic network sampling strategy, a user-developed national survey was completed by a larger sample (N = 1,186) of parents and informal caregivers of children with NDDs. The survey utilized a combination of both closed and open-ended questions, and a logistic regression analysis was carried out to assess the association between family characteristics, characteristics of the child, and COVID-19 related family life interference. Before carrying out the regression an inductive content analysis of the open-ended question on `How has the isolation affected the family´ was carried out to construct the outcome variable. RESULTS: The initial analysis indicated that the COVID-19 pandemic induced a shift in everyday family life and a lack of guidance and support related to managing the challenges they were facing. Caregivers who reported that COVID-19 had significantly interfered with their family life, were more likely to report having anxious children, and to have experienced an increased number of conflicts at home. The logistic regression showed that both anxious children and increased conflicts considerably increased the risk for reporting family life interference compared to those that reported no increased conflicts or anxious children. DISCUSSION: Considering how the COVID-19 related increased conflicts at home and anxious children threaten the family life of the NDD caregiver population, as an external source of family stress, which might lead to negative impact on their mental and physical well-being, the need for further research in collaboration with user representatives is apparent. Our study suggests that more information should be provided to healthcare providers, social professionals, peers, people with NDDs, and caregivers of people with NDDs about the potential threats that a stressful life event such as the current pandemic can pose to their mental and physical health and their family life.

Factor structure of the patient health questionnaire-4 in adults with attention-deficit/hyperactivity disorder.

Background: Persons with attention-deficit/hyperactivity disorder (ADHD) frequently experience symptoms of anxiety and depression. In this population, there is a need for validated brief self-report screening questionnaires to assess the severity of comorbid mental health problems. The Patient Health Questionnaire 4 (PHQ-4) is a self-report questionnaire that may contribute to this purpose as it can screen for both disorders efficiently. However, this will be the first study examining the factor structure of the PHQ-4 in samples of adults with ADHD, and also evaluating the validity of the Norwegian version of the PHQ-4. Objectives: The aim of the current cross-sectional study was to examine the factor structure and validity of the Norwegian version of the PHQ-4 in a sample of adults who reported having been diagnosed with ADHD. Methods: Of 496 invited, a total of 326 participants (66%) completed the PHQ-4, The World Health Organization Five Well-Being Index, the Oslo Social Support Scale and the 4-item Perceived Stress Scale electronically in a web-portal between the 9th and 30th of June 2020. Results: Confirmatory factor analysis of the PHQ-4 supported a two-factor structure [RMSEA = 0.038 (90% CI 0.000-0.159), CFI = 1.00, TLI = 0.999, SRMR = 0.004], consisting of a depression factor and an anxiety factor. Standardized factor loadings were 0.79 to 0.97. The PHQ-4 was negatively correlated with well-being and social support and positively correlated with perceived level of stress. Conclusion: This study indicates promising psychometric properties of the PHQ-4 as a measure of anxiety and depressive symptoms in adults with self-reported ADHD who are fluent in Norwegian. The questionnaire's brevity makes it a valuable resource in research and clinical settings. However, more studies are needed to test the instrument in a clinical sample.

Attitudes of Mental Health Service Users Toward Storage and Use of Electronic Health Records.

OBJECTIVE: Electronic health records (EHRs) are used for both clinical practice and research. Because mental health service users' views are underrepresented in perspectives on EHR use, the authors examined service users' awareness, attitudes, and opinions about EHR data storage and sharing. METHODS: A mixed-methods, cross-sectional design was used to examine attitudes of 253 Norwegian mental health service users who were recruited online to complete a quantitative and qualitative (free-text) survey about EHR utilization. RESULTS: Most participants were aware that EHRs were stored (95%) and shared (58%). Most thought that patients benefited from EHR storage (84%), trusted authorities with EHR sharing (71%), were willing to share their EHRs to help others (75%), felt they benefited from EHR sharing (75%), and thought EHR sharing was ethical for health care and research (71%). Fewer were aware of EHR sharing for research (36%), and 62% were aware that shared data were anonymized. Of the participants, 69% recognized privacy risks associated with sharing. Lack of transparency and skepticism about anonymization and misuse of EHR data were concerns and perceived risks. Mental health service users thought that EHRs should be shared for policy development (81%), education and training (85%), improving care quality (89%), research (91%), and clinical decision support (81%). CONCLUSIONS: Participants were aware of and supported EHR sharing for research and clinical care. They supported sharing to help others and were willing to fully participate in clinical care and research, as well as to share EHR information for their own care, research, and the care of others.