Patient-reported outcome (PRO) measurements in chronic and malignant diseases: ten years' experience with PRO-algorithm-based patient-clinician interaction (telePRO) in AmbuFlex.

BACKGROUND: Patient-reported Outcome (PRO) measures may be used as the basis for out-patient follow-up instead of fixed appointments. The patients attend follow-up from home by filling in questionnaires developed for that specific aim and patient group (telePRO). The questionnaires are handled in real time by a specific algorithm, which assigns an outcome color reflecting clinical need. The specific questionnaires and algorithms (named solutions) are constructed in a consensus process with clinicians. We aimed to describe AmbuFlex' telePRO solutions and the algorithm outcomes and variation between patient groups, and to discuss possible applications and challenges. METHODS: TelePRO solutions with more than 100 processed questionnaires were included in the analysis. Data were retrieved together with data from national registers. Characteristics of patients, questionnaires and outcomes were tabulated for each solution. Graphs were constructed depicting the overall and within-patient distribution of algorithm outcomes for each solution. RESULTS: From 2011 to 2021, 29 specific telePRO solutions were implemented within 24 different ICD-10 groups. A total of 42,015 patients were referred and answered 171,268 questionnaires. An existing applicable instrument with cut-off values was available for four solutions, whereas items were selected or developed ad hoc for the other solutions. Mean age ranged from 10.7 (Pain in children) to 73.3 years (chronic kidney disease). Mortality among referred patients varied between 0 (obesity, asthma, endometriosis and pain in children) and 528 per 1000 patient years (Lung cancer). There was substantial variation in algorithm outcome across patient groups while different solutions within the same patient group varied little. DISCUSSION: TelePRO can be applied in diseases where PRO can reflect clinical status and needs. Questionnaires and algorithms should be adapted for the specific patient groups and clinical aims. When PRO is used as replacement for clinical contact, special carefulness should be observed with respect to patient safety.

AmbuFlex: tele-patient-reported outcomes (telePRO) as the basis for follow-up in chronic and malignant diseases.

PURPOSE: A tele-patient-reported outcome (telePRO) model includes outpatients' reports of symptoms and health status from home before or instead of visiting the outpatient clinic. In the generic PRO system, AmbuFlex, telePRO is used to decide whether a patient needs an outpatient visit and is thus a tool for better symptom assessment, more patient-centred care, and more efficient use of resources. Specific PROs are developed for each patient group. In this paper we describe our experiences with large-scale implementations of telePRO as the basis for follow-up in chronic and malignant diseases using the generic PRO system AmbuFlex. METHODS: The AmbuFlex concept consists of three generic elements: PRO data collection, PRO-based automated decision algorithm, and PRO-based graphical overview for clinical decision support. Experiences were described with respect to these elements. RESULTS: By December 2015, AmbuFlex was implemented in nine diagnostic groups in Denmark. A total of 13,135 outpatients from 15 clinics have been individually referred. From epilepsy clinics, about 70 % of all their outpatients were referred. The response rates for the initial questionnaire were 81-98 %. Of 8256 telePRO-based contacts from epilepsy outpatients, up to 48 % were handled without other contact than the PRO assessment. Clinicians as well as patients reported high satisfaction with the system. CONCLUSION: The results indicate that telePRO is feasible and may be recommended as the platform for follow-up in several patient groups with chronic and malignant diseases and with many consecutive outpatient contacts.

Determinants of Self-Rated Health Three Months after Stroke.

OBJECTIVES: Self-rated health is an important aspect of life after stroke. The aim of this study was to compare self-rated health in a population of stroke patients to the general Danish population and to analyze to what extent clinical and patient-related factors influence self-rated health 3 months after stroke. METHODS: We sent questionnaires on self-rated health (Short Form-12 Health Survey) to all patients younger than 80 years with first-time stroke admitted to any hospital in the Central Denmark Region between October 1, 2008, and December 31, 2011 (N = 2414). Information on clinical and patient-related determinants of self-rated health was obtained from population-based national health registers. RESULTS: Compared to the general population, stroke patients rated their health lower than the general Danish population. The largest differences were found in domains of physical health, and only minor differences were identified in mental health between the study and the general Danish population. Stroke severity, comorbidity, smoking, educational level, and age were strongly associated with self-reported health. For patients with a "very severe" stroke, the adjusted odds ratios (ORs) of reduced mental health were 1.6 (95% confidence interval [CI]: 1.3-2.6) and 5.1 (95% CI: 2.7-9.6) for low physical health, compared to patients with "mild stroke." Patients with a Charlson Comorbidity Index score of 3 or higher had a higher risk of low mental health (OR 1.9 [95% CI: 1.3-2.6]) and low physical health (OR 2.8 [95% CI: 1.9-4.0]) than patients with no additive diseases. CONCLUSIONS: Stroke had a marked impact of self-rated health, particularly physical health. Higher stroke severity and level of comorbidity were important risk factors of reduced self-rated health.

The national implementation of a triage algorithm based on patient-reported outcome measures in outpatients with epilepsy.

This is a letter to the editor on the article "Limited value of a patient-reported triage algorithm in an outpatient epilepsy clinic" Dan Med J 2022;69(7):A12210915.

Determinants of Health Status After Stroke: A Cohort Study with Repeated Measurements.

BACKGROUND: Knowledge about the long-term course of health following stroke is sparse and relies mainly on studies with short follow-up or few measurements per patient. We aimed to describe the course and analyze the determinants of the course of physical and mental health status after stroke with repeated measurements in a large population-based cohort of first time Danish stroke patients. METHODS: We followed 2,414 first time stroke patients admitted to any hospital in the Central Denmark Region, Denmark, between October 1, 2008 and January 1, 2012, with five questionnaires over a 2 years period. Self-rated health was assessed by the SF-12 instrument. Information on possible clinical and patient-related determinants of self-rated health was obtained from questionnaires and national registers. The scores were analyzed at five selected fixed time-points and as well as longitudinally with mixed models. RESULTS: The SF-12 mental component summary score (MCS) increased with 0.89 points/year (95% CI=0.6-1.2), while the increase in the physically component summary score (PCS) did not reach statistical significance (0.13/year; 95% CI=-0.2-0.5). The most pronounced changes were seen in the Vitality and Role Physical SF-12 subscales, which both increased by 2.1 points/year. No statistically significant changes over time were found in the Physical Functioning and Bodily Pain subscales. Variables associated with increasing self-rated mental health (MCS) were no comorbidity, older age, male gender, and mild stroke severity. Variables associated with increasing ratings of physical health (PCS) were mild stroke severity, no comorbidity, higher educational level, and younger age. The negative impact of age increased significantly with time during the follow-up period for physical as well as mental health, while the effects of the other variables were stable over time. The results were similar in the two analytical approaches. CONCLUSION: In a large, geographically well-defined population of first time stroke patients, the majority of SF-12 sub-scales and the mental component score improved slightly over time. Small improvements in self-rated mental health may be observed during the first 2 years after the stroke. Stroke is a disease with long-term consequences on a wide range of health aspects. Level as well as course differ between sub-groups, and treatment of comorbidity may be an important target with respect to rehabilitation.

Self-rated health and return to work after first-time stroke.

OBJECTIVE: Self-rated health is an essential aspect of life after stroke, and return to work is considered one of the most important outcomes for younger stroke patients. The aim of this study was to examine whether self-rated health 3 months after stroke, clinical and demographic determinants are independently associated with return to work and subsequent work-stability. MATERIAL AND METHODS: A total of 590 patients with first-time stroke were included from a Danish population-based cohort study. All patients were younger than 60 years and working or unemployed at the time of stroke. Information on self-rated health (Short Form 12; SF-12) was collected from questionnaires 3 months after stroke. Employment status was defined on a weekly basis using national register-data on transfer payments. RESULTS: Fifty percent were self-supporting or job-seeking 12 months after stroke, and the same proportion was found after 24 months. More than 70% of the patients who returned to work did not receive sickness benefits in the 12 months following return to work. Good self-rated health 3 months after stroke and minor stroke severity were strongly associated with return to work after 12 and 24 months. CONCLUSION: Self-rated health 3 months after stroke was strongly associated with return to work and work-stability after stroke.

Contacts to general practice and antidepressant treatment initiation after screening for anxiety and depression in patients with heart disease.

INTRODUCTION: Anxiety and depression are found in 20-30% of all persons with heart disease, and depression is known to impact mortality. This paper aimed to describe the effect of systematic screening of this population in terms of use of general practice, psychological therapy and antidepressant treatment. METHODS: A population-based cohort study was conducted in 2011-2013 comprising 1,658 people with heart disease treated at a Danish regional hospital. Collected data were based on Danish national registers and patient questionnaires. RESULTS: Patients with heart disease and anxiety or depressive symptoms had more general practitioner (GP) contact rates than patients without anxiety or depressive symptoms both before and after the screening. Furthermore, patients with depressive symptoms increased their GP contact rate significantly in the first month after the screening, while this was not the case for patients with anxiety symptoms. Finally, patients with heart disease and anxiety or depressive symptoms more frequently initiated treatment with antidepressants than patients with heart disease without anxiety or depressive symptoms, whereas therapy sessions with a psychologist were rarely used. CONCLUSIONS: Heart patients with depressive symptoms may benefit from screening for depression, information about the screening result and a subsequent recommendation to consult their GP in case of signs of depression. -However, the observed effect seems to be modest. FUNDING: The study was supported by an unrestricted grant from the Lundbeck Foundation (grant number: R155-2012-11280). TRIAL REGISTRATION: none.

Use of Patient-Reported Outcome (PRO) Measures at Group and Patient Levels: Experiences From the Generic Integrated PRO System, WestChronic.

BACKGROUND: Patient-reported outcome (PRO) measures may be used at a group level for research and quality improvement and at the individual patient level to support clinical decision making and ensure efficient use of resources. The challenges involved in implementing PRO measures are mostly the same regardless of aims and diagnostic groups and include logistic feasibility, high response rates, robustness, and ability to adapt to the needs of patient groups and settings. If generic PRO systems can adapt to specific needs, advanced technology can be shared between medical specialties and for different aims. OBJECTIVE: We describe methodological, organizational, and practical experiences with a generic PRO system, WestChronic, which is in use among a range of diagnostic groups and for a range of purposes. METHODS: The WestChronic system supports PRO data collection, with integration of Web and paper PRO questionnaires (mixed-mode) and automated procedures that enable adherence to implementation-specific schedules for the collection of PRO. For analysis, we divided functionalities into four elements: basic PRO data collection and logistics, PRO-based clinical decision support, PRO-based automated decision algorithms, and other forms of communication. While the first element is ubiquitous, the others are optional and only applicable at a patient level. Methodological and organizational experiences were described according to each element. RESULTS: WestChronic has, to date, been implemented in 22 PRO projects within 18 diagnostic groups, including cardiology, neurology, rheumatology, nephrology, orthopedic surgery, gynecology, oncology, and psychiatry. The aims of the individual projects included epidemiological research, quality improvement, hospital evaluation, clinical decision support, efficient use of outpatient clinic resources, and screening for side effects and comorbidity. In total 30,174 patients have been included, and 59,232 PRO assessments have been collected using 92 different PRO questionnaires. Response rates of up to 93% were achieved for first-round questionnaires and up to 99% during follow-up. For 6 diagnostic groups, PRO data were displayed graphically to the clinician to facilitate flagging of important symptoms and decision support, and in 5 diagnostic groups PRO data were used for automatic algorithm-based decisions. CONCLUSIONS: WestChronic has allowed the implementation of all proposed protocol for data collection and processing. The system has achieved high response rates, and longitudinal attrition is limited. The relevance of the questions, the mixed-mode principle, and automated procedures has contributed to the high response rates. Furthermore, development and implementation of a number of approaches and methods for clinical use of PRO has been possible without challenging the generic property. Generic multipurpose PRO systems may enable sharing of automated and efficient logistics, optimal response rates, and other advanced options for PRO data collection and processing, while still allowing adaptation to specific aims and patient groups.

[Therapeutic hypothermia after cardiac arrest]. / Terapeutisk hypotermi efter hjertestop.

INTRODUCTION: The objective of the present paper was to examine the association between cerebral status at discharge in patients treated with therapeutic hypothermia (TH) and: 1) time form collapse to initiation of TH, 2) time form collapse to target temperature (32-34 degrees C), 3) time from initiation of TH to target temperature and 4) time to awakening after attainment of normal temperature. We also investigated the significance of age, over and under 70, and precipitating arrhythmia in relation to cerebral status at discharge. MATERIAL AND METHODS: A total of 55 resuscitated but continuously comatose cardiac arrest patients who had received TH. OUTCOME MEASURES: cerebral status at discharge and 30-day mortality. RESULTS: No significant association was found between cerebral score at discharge and 1) time span from collapse to initiation of TH, 2) time form collapse to target temperature or 3) time from initiation of TH to target temperature. It was found, however, that a longer time to awakening after attainment of normal temperature was associated with a poorer cerebral outcome (p = 0.000). There is a non-significant tendency towards a worse cerebral outcome and higher 30-day mortality in patients aged over 70 years, and in patients with asystole as precipitating arrhythmia. CONCLUSION: Among the factors investigated, only time from attainment of normal body temperature to awakening was significantly associated with cerebral outcome.