Readiness, acceptance and use of digital patient reported outcome in an outpatient clinic.

Use of digital patient-reported outcomes is being introduced in care of chronic conditions, including Inflammatory Bowel Disease. The aim is to supplement face-to-face follow-up sessions through symptom screening, and to inform follow-up through questions about mental health and quality of life. However, little is known about who is using this as intended. This study aimed to map differences between users and non-users among people with IBD and explore the mechanisms behind. We administered a questionnaire including the Readiness and Enablement Index for Health Technology (ReadHy) and the Service User Technology Acceptability Questionnaire (SUTAQ) to all people with IBD registered at Silkeborg Regional Hospital. Comparison between users and non-users and cluster analysis was conducted. Effect size (Cohen's d) was used to estimate magnitude of difference between groups. The user and non-user groups differed most strongly by level of emotional distress (d = 0.45). Cluster analysis of the ReadHy scales showed profiles have different sets of difficulties and reservations towards digital solutions. These difficulties correlated moderately with SUTAQ dissatisfaction and low acceptability. The dimensions of ReadHy may help to better understand particular needs of people with IBD when accessing digital PROs, which may lead to higher acceptability and improved quality of care.

Digital patient-reported outcomes in inflammatory bowel disease routine clinical practice: the clinician perspective.

BACKGROUND: Use of digital health services, such as digital patient-reported outcomes, depends on many different human factors as well as digital design solutions. One factor is clinicians' attitude towards the system, their reasoning behind the using system and their perceptions of patients' ability to engage with digital health systems. This study aimed to explore hospital clinicians' attitudes towards digital patient-reported outcomes used in the routine care and treatment of inflammatory bowel disease, and to explore the potential role of clinicians' attitudes in influencing patients' use of digital patient-reported outcomes. RESULTS: Twelve clinicians using digital patient-reported outcome assessments in the care of inflammatory bowel disease were interviewed about their experiences of, and perspectives on, using this service. Most participants supported the use of digital patient-reported outcome assessments in the care of most patients. Participants reported that most patients found the digital solution easy to use. They perceived digital patient-reported outcomes to have three main purposes: prioritising resources; improving patients' quality of life; and improving quality of care. The patient-clinician relationship was of great importance to participants. Participants varied in their intention to use digital PRO, as some viewed the system as a positive but optional add-on for patients, whilst others intended to use the system with all eligible patients. CONCLUSION: Clinicians' general support of using digital patient-reported outcomes might facilitate their use among patients with inflammatory bowel disease. The participants saw benefits in doing so for patients, clinicians and the wider health service. Clinicians' attitudes towards the use of digital PRO in the care of their patients may influence patients' uptake of health service.

Telemedicine based on patient-reported outcomes in management of patients with inflammatory bowel disease in a real-life setting - a before and after cohort study.

BACKGROUND: Avoidable appointments and increasing incidence of inflammatory bowel disease (IBD) call for alternative ways of organizing outpatient visits. In controlled studies, telemedicine including patient reported outcome (PRO) has shown to improve outcomes in IBD and reduce health care utilization. However, we lack studies of telemedicine implemented in everyday practice. We therefore described use of a PRO-based telemedicine follow-up (AmbuIBD) in a real-life setting and investigated the effect on outpatient visits and hospital admissions. METHODS: We conducted a cohort study including patients with IBD in an outpatient clinic at a Danish regional hospital August 2018. Data included extracts from the Patient Administration System and the AmbuFlex system between 2017 and August 2018, plus questionnaire data from clinicians. Descriptive statistics were used to describe use of AmbuIBD and differences between before and after results were tested with Wilcoxon's signed-rank test. RESULTS: Of 848 patients in outpatient care, 77% were included in AmbuIBD. Most patients were set to answer a PRO questionnaire once a year (n = 407, 62%), and 66% of 1913 answered questionnaires were handled with no further contact. AmbuIBD was well accepted by clinicians. Outpatient visits the year after AmbuIBD compared to the year before were reduced with 14% (p ≤ .001). The largest reduction was for patients with mild or no disease activity (45%, p ≤ .001). No difference was found for hospital admissions. CONCLUSIONS: AmbuIBD is feasible and well accepted when implemented in an outpatient clinic. More than half of patients are only followed by questionnaire, and we found a reduction in outpatient visits.

Patient perspectives on digital patient reported outcomes in routine care of inflammatory bowel disease.

BACKGROUND: Digital patient reported outcomes are used increasingly in daily care and treatment of inflammatory bowel disease. Their purpose includes increased focus on patient wellbeing, reduction in avoidable follow-up consultations and increased patient self-management. However, implementation issues occur and studies indicate patients may have concerns, particularly regarding having fewer face-to-face consultations. This study aims to explore patients' perspectives of use and non-use of digital patient reported outcomes and to understand the mechanisms underpinning patient reluctance to engage with this health technology. RESULTS: Sixteen patients with inflammatory bowel disease at a regional hospital in Denmark were interviewed about their experiences of, and perspectives on, digital patient reported outcomes. A certain level of eHealth literacy was found to be a fundamental condition for use, while other factors were barriers or facilitators for use of digital PROs. Patients' main concerns were about potential consequences for their care and relationship with the clinic. Most patients in stable remission were satisfied with the hospital being a "life-line" if their symptoms worsened, and perceived digital patient reported outcomes to be an efficient tool to establish that "life-line". Patients with severe symptoms and a high degree of emotional distress related to their disease valued the potential for digital patient reported outcomes to increase their clinicians' focus on mental health and extra-intestinal symptoms. CONCLUSION: This study found that if patients had sufficient digital literacy, they perceived digital patient reported outcomes to be a useful replacement for face-to-face consultations. However, they were concerned about digital patient reported outcomes' effect on the patient-clinician relationship and its ability to detect worsening of symptoms. These concerns may be mitigated by good patient-clinician relationships, and the option for patients to maintain direct telephone contact with their gastroenterology specialist.

'Digital patient reported outcomes' refer to systems by which health professionals collect health information from patients between consultations, mostly via self-completed online questionnaires. This approach aims to support treatment and disease management, and reduce avoidable face-to-face consultations between doctor and patient. However, patients may have concerns about using digital systems to communicate with their clinicians, particularly regarding having fewer face-to-face consultations. To find out more, we interviewed sixteen patients at an Inflammatory Bowel Disease outpatient clinic in Denmark, where digital Patient Reported Outcomes have been used since 2017. We found out that patients needed to have enough familiarity with technology to be able to use these online systems. Patients were worried about how this new way of communicating with the clinic affected their care and their relationship with their doctors and nurses. People with Inflammatory Bowel Disease can have long periods of time with very little disease activity, and in these stable periods, a lot of patients found that a digital Patient Reported Outcomes system was a good way to stay in touch with the clinic and keep reporting their symptoms online­ as long as they still had the possibility of contacting the clinic by telephone if needed. During disease flare-ups, patients believed that digital patient reported outcomes' could be used to give broader insight into their health situation, and trusted their clinicians to use their self-reported data to improve their care.

Direct-access to sonographic diagnosis of deep vein thrombosis in general practice: a descriptive cohort study.

BACKGROUND: Suspicion of deep vein thrombosis (DVT) is common and requires urgent and efficient investigation due to hazardous prognosis. The traditional diagnostic pathway can be complex and time-consuming, and innovative solutions may provide easy access to diagnostics and better use of healthcare resources. We aimed to describe use, clinical outcomes and time used when providing general practitioners (GPs) with a direct-access pathway to hospital-based, single whole-leg compression ultrasound (CUS) for patients with suspected DVT. Furthermore we aimed to describe the resources used in the new direct-access pathway and compare it with the previous pathway. METHODS: We conducted a 2-year descriptive cohort study (2016-2017) including 449 consecutively referred patients for diagnosis of DVT in a Danish regional hospital. The previous pathway included pre-test at the medical department, a proximal leg CUS if required based on the pre-test and a re-scan if the first CUS was negative. The new pathway included two strategies: 1) a 'yes-no strategy', where GPs referred patients directly to whole-leg CUS and if positive, treated at the medical department and if negative, discharged to the GP, 2) a 'follow-up strategy' where GPs could require that patients were seen at the medical department, irrespective of the CUS result. Data included extractions from the Radiology Information and Patient Administrative Systems, and mean salaries of healthcare professionals at Silkeborg Regional Hospital, Denmark. Descriptive statistics were used to describe prevalence, timelines and costs. RESULTS: GPs referred 318 (71%) patients through the yes-no strategy and 131 (29%) via the follow-up strategy with DVT diagnosed in 48 (15%) and 51 (39%) patients, respectively (p < 0.001). For the 263 patients completed after CUS in the yes-no strategy, median pathway time was 24 min (IQI: 16-36), and for those with DVT (including both strategies) 202 min (IQI: 158-273). Direct-access pathway costs were €49.7 less per patient than the previous pathway. CONCLUSION: Direct-access to CUS for suspected DVT was achievable, had short time intervals and required fewer resources. The difference in DVT prevalence indicates that GPs distinguish between patients with low and high risk of DVT.

Depressive symptoms and mental health-related quality of life in adolescence and young adulthood after early parental death.

Aims: Little is known about long-term mental health in young adults who participate in ongoing grief counseling programs after early parental death in childhood, adolescence or young adulthood. The purpose of this study was to examine mental health in young adults according to early parental death and participation in grief counseling. Methods: In a cross-sectional, questionnaire-based study, we included three samples of young adults age 18-41 years. One sample who had lost a parent between age 0 and 30 years and who had participated in grief counseling identified through four Danish grief-counseling organizations, and two registry-based samples of young adults included parentally bereaved and non-bereaved young adults. Multivariate-adjusted regression analyses were performed to characterize risk of depressive symptoms and mental health-related quality of life (HQoL) according to early parental death and participation in grief counseling. Results: A total of 2467 (45%) young adults participated. Bereaved young adults reported significantly more depressive symptoms (p<0.0001) and lower mental HQoL (p<0.0001) than non-bereaved young adults and than general population levels for both depressive symptoms (p<0.0001) and HQoL (p<0.0001). Bereaved young adults who had participated in grief counseling reported significantly more depressive symptoms (p<0.0001) and lower mental HQoL (p<0.0001) than bereaved persons who did not participate in grief counseling. Conclusions: Bereaved young adults report more mental health problems than non-bereaved young adults, and also after participation in grief counseling the death of a parent may be accompanied by subsequent mental health problems.

Maladaptive coping in adults who have experienced early parental loss and grief counseling.

This study compares maladaptive coping, measured as substance use, behavioral disengagement, self-blame, and emotional eating, among adults (>18 years) who have experienced early parental loss ( N = 1465 women, N = 331 men) with non-bereaved controls ( N = 515 women, N = 115 men). We also compared bereaved adults who received grief counseling ( N = 822 women, N = 190 men) with bereaved controls who had not ( N = 233 women, N = 66 men). Bereaved adults reported significantly more substance use, behavioral disengagement, and emotional eating than non-bereaved adults. Counseling participants reported significantly more substance use and self-blame than non-participants. Our results suggest that early loss may negatively impact the development of adulthood coping.

The impact of a breast cancer diagnosis on health-related quality of life. A prospective comparison among middle-aged to elderly women with and without breast cancer.

Background The improved survival after breast cancer has prompted knowledge on the effect of a breast cancer diagnosis on health-related quality of life (HQoL). This study compared changes in HQoL among women from before to after breast cancer diagnosis with longitudinal changes among women who remained breast cancer-free. Material and methods The Danish Diet, Cancer and Health study included 57 053 cancer-free persons aged 50-64 years at baseline (1993-1997). We used data from first follow-up (1999-2002) and second follow-up (2010-2012) on HQoL [Medical Outcomes Survey, short form (SF-36)] obtained from 542 women aged 64-82 years with primary breast cancer (stages I-III) and a randomly matched sample of 729 women who remained breast cancer-free. Linear regression models were used to estimate the differences in changes in HQoL between women with and without breast cancer; the analyses were repeated with stratification according to age, comorbidity, partner support and time since diagnosis. Results Women with breast cancer reported significantly larger decreases in HQoL from before to after diagnosis than those who remained breast cancer-free (physical component summary, -2.0; 95% CI -2.8; -1.2, mental component summary, -1.5, 95% CI -2.3; -0.6). This association was significantly modified by comorbidity and time since diagnosis. Conclusions Women with breast cancer reported significantly larger HQoL declines than breast cancer-free women. Breast cancer diagnosis seems to have the greatest impact on HQoL closest to diagnosis and in women with comorbidity indicating that this group should be offered timely and appropriate follow-up care to prevent HQoL declines.