Dataset Information

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

ABSTRACT:

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.

SUBMITTER: Nielsen AS

PROVIDER: S-EPMC9117590 | biostudies-literature | 2022 May

REPOSITORIES: biostudies-literature

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Publications

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

Nielsen Amalie Søgaard AS Appel Charlotte W CW Larsen Birgit Furstrand BF Hanna Lisa L Kayser Lars L

Journal of patient-reported outcomes 20220519 1

<h4>Background</h4>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 inflammat ...[more]

PMID: 35587297

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Project description:BackgroundDigital 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.ResultsSixteen 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.ConclusionThis 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.

Project description:BackgroundCancer and its treatment can have significant impacts on health status, quality of life and functioning of patients. Direct information from patients regarding these aspects can be collected via electronic platforms in the form of electronic Patient Reported Outcome Measures (ePROMs). Research has shown that the use of ePROMS in cancer care leads to improved communication, better symptom control, prolonged survival and a reduction in hospital admissions and emergency department attendance. Acceptability and feasibility of routine ePROM collection has been reported by both patients and clinicians but to date their use has predominantly been limited to clinical trials. MyChristie-MyHealth is an initiative from a UK comprehensive cancer centre The Christie NHS Foundation Trust which incorporates the regular collection of ePROMs into routine cancer care. This study, carried out as part of a service evaluation, explores patient and clinician experiences of using the MyChristie-MyHealth ePROMs service.Results100 patients with lung and head and neck cancers completed a Patient Reported Experience questionnaire. All patients reported that MyChristie-MyHealth was easy to understand and, almost all found it timely to complete and easy to follow. Most patients (82%) reported it improved their communication with their oncology team and helped them to feel more involved with their care (88%). A large proportion of clinicians (8/11) felt ePROMs helped communication with their patients and over half (6/10) felt they led to consultations being more patient focused. Clinicians also felt that the use of ePROMs resulted in patients being more engaged in consultations (7/11) and their cancer care in general (5/11). Five clinicians reported that the use of ePROMs altered their clinical decision making.ConclusionsRegular ePROMs collection as part of routine cancer care is acceptable to both patients and clinicians. Both patients and clinicians feel their use improved communication and increased the feeling of patient involvement with their care. Further work is needed to explore the experiences of patients that did not complete the ePROMs as part of the initiative and to continue to optimize the service for both patients and clinicians.

Project description:BackgroundSystemic mastocytosis (SM) is a rare clonal neoplasm driven by KIT D816V and other mutations. Data were collected from the patient perspective on disease burden and included an SM-specific symptom assessment tool.MethodsUS adults aged 18 years and older with a self-reported SM diagnosis completed an online TouchStone SM Patient Survey of 100 items, including the 12-item Short-Form Health Survey, the Indolent Systemic Mastocytosis Symptom Assessment Form, and the Work Productivity and Activity Impairment Questionnaire, as well as questions about SM diagnosis, the impact of SM on daily activities, work impairment, and health care use. The results were analyzed using descriptive statistics.ResultsFifty-six individuals completed the survey (89% women; median age, 48 years; mean time since diagnosis, 6.7 years), reporting indolent SM (66%), aggressive SM (9%), smoldering SM (5%), and unknown SM subtype (18%). Over a 1-year recall, respondents reported seeking emergency care for anaphylaxis (30%) and taking three or more prescription medications (52%) for SM. Over one half of patients (54%) reduced their work hours because of SM, and 64% avoided leaving home because of symptoms. A majority of respondents (93%) had experienced ≥10 SM-related symptoms, noting that the most bothersome were anaphylactic episodes (18%), abdominal/stomach pain (16%), diarrhea/loose stools (13%), and fatigue (11%). Whereas an Indolent Systemic Mastocytosis Symptom Assessment Form-derived total symptom score of 28 is used to indicate moderate-to-severe symptoms, the mean total symptom score was 52.7. Mental and physical component summary scores from the 12-item Short-Form Health Survey were below population norms.ConclusionsPatients who were surveyed reported substantial symptom burden and unmet needs because of SM, as evidenced by seeking emergency care and reporting bothersome symptoms, poor quality of life, and reduced work hours and productivity.Lay summaryThe objective of this research was to understand the burden and unmet needs in the rare disease of systemic mastocytosis (SM) to guide future care. Fifty-six patients completed an online survey containing questions about their diagnosis, medications, health care use, quality of life, and SM symptoms. The results demonstrated that SM is associated with severe and burdensome symptoms, anaphylactic events, emergency department visits, use of multiple medications, reduced ability to work, and poor physical and psychological quality of life. These findings suggest the need for future advances to address unmet needs in patients affected by SM.

Project description:BackgroundRegular physical activity is associated with improved quality of life in patients with inflammatory bowel diseases (IBDs), although much of the existing research is based on self-reported data. Wearable devices provide objective data on many rich physical activity dimensions including steps, duration, distance, and intensity. Little is known about how patients with IBDs engage in these varying dimensions of exercise and how it may influence their symptom and disease-specific patient-reported outcomes (PROs).ObjectiveThis study aims to (1) cluster physical activity patterns from consumer-grade wearable devices and (2) assess the relationship between the clusters and PROs in patients with IBDs.MethodsWe conducted a cross-sectional and longitudinal cohort study among adults with IBDs in the Crohn's and Colitis Foundation IBD Partners cohort. Participants contribute physical activity data through smartphone apps or wearable devices in a bring-your-own-device model. Participants also complete biannual PRO questionnaires from the Patient-Reported Outcomes Measurement Information System short forms and IBD-specific questionnaires. K-means cluster analysis was used to generate physical activity clusters based on 3 key features: number of steps, duration of moderate to vigorous activity (minutes), and distance of activity (miles). Based on the clusters, we conducted a cross-sectional analysis to examine differences in mean questionnaire scores and participant characteristics using one-way ANOVA and chi-square tests. We also conducted a longitudinal analysis to examine individual cluster transitions among participants who completed multiple questionnaires, and mean differences in questionnaire scores were compared using 2-tailed paired sample t tests across 6-month periods.ResultsAmong 430 participants comprising 1255 six-week physical activity periods, we identified clusters of low (33.7%, n=423), moderate (46%, n=577), and high (20.3%, n=255) physical activity. Scores varied across clusters for depression (P=.004), pain interference (P<.001), fatigue (P<.001), sleep disturbance (P<.001), social satisfaction (P<.001), and short Crohn Disease Activity Index (P<.001), with those in the low activity cluster having the worst scores. Sociodemographic characteristics also differed, and those with low physical activity were older (P=.002), had higher BMIs (P<.001), and had longer disease durations (P=.02) compared to other clusters. Among 246 participants who completed at least 2 consecutive questionnaires consisting of 726 questionnaire periods, 67.8% (n=492) remained in the same cluster, and only 1.2% (n=9) moved to or from the furthest clusters of low and high activity across 6-month periods.ConclusionsFor patients with IBDs, there were positive associations between physical activity and PROs related to disease activity and psychosocial domains. Physical activity patterns mostly did not fluctuate over time, suggesting little variation in exercise levels in the absence of an intervention. The use of real-world data to identify subgroups with similar lifestyle behaviors could be leveraged to develop targeted interventions that provide support for psychosocial symptoms and physical activity for personalized IBD care.

Project description:BACKGROUND:This article addresses patient-reported outcome (PRO)-based follow-up used as a substitute for regularly scheduled follow-ups. In PRO-based follow-up, patients' PRO data filled in by the patients at home are used by clinicians as a decision aid to identify those who need clinical attention based on an automated PRO algorithm, clinical attention being either a phone call or a physical consultation. A physical consultation in the outpatient clinic prompted by the patient's PRO is termed a "PRO consultation." In this multi-perspective qualitative study, we explored the influence of patients' self-reported data on patient-clinician interaction during PRO consultations in epilepsy outpatient clinics. Interpretive description was the methodological approach, applying data from participant observations, informal interviews with clinicians, and semi-structured interviews with clinicians and patients. RESULTS:We found that application and deliberate use of patients' PRO measures can affect patient-clinician interaction, promoting patient involvement in terms of improved communication and increased patient activation. These findings reflect the general patterns that have been reported in the literature. In addition, we found that PRO measures also may induce unmet expectations among some patients that can have a negative effect on patients' experiences of the interaction and their follow-up experience in general. We extracted two thematic patterns that represent PRO measures' potential for patient involvement in the patient-clinician interaction. The first pattern represents enablers, and the second pattern represents barriers for PRO measures to affect patient involvement. CONCLUSIONS:Applying PRO measures in clinical practice does not automatically enhance the patient-clinician interaction. To strengthen the benefits of PRO measures, the following supplementary clinical initiatives are suggested: summarizing and reporting the PRO measures back to the patient, considering carefully which PRO measures to include, training clinicians and assuring that the patients' introduction to PRO-based follow-up clarifies expectations.

Project description:ObjectivesThis systematic review aims to investigate what is currently known about the characteristics of interactions between patients with inflammatory bowel disease (IBD) and their clinicians and its effect on patient outcomes.Data sourcesScopus, PubMed, Embase, Communication Abstracts, Health & Society, Linguistics and Language Behaviour Abstracts and PsycINFO were systematically searched from inception to June 2021.Study eligibility criteriaPeer-reviewed journal articles and book chapters in English investigating the characteristics of naturally occurring interactions between clinicians that manage IBD and patients with IBD during recorded consultations were included.Study appraisal and synthesis methodsRisk of bias was assessed using a specifically developed quality assessment tool, grounded in linguistic theory and the Mixed Methods Appraisal Tool. A narrative synthesis guided by the linguistic concept of metafunction was performed to synthesise the findings.ResultsOf the 2883 abstracts reviewed five formed the basis of the review. Interactions between IBD nurses and patients have been mostly characterised in terms of information provision regarding prescribed medications without consideration of the interpersonal aspect. Discussing online medical information with nurses has been shown to improve patient satisfaction. Analyses of gastroenterologist-patient interactions have concentrated on the clinical relationship which has been shown to be disease-centred. Shared decision making in ulcerative colitis has been shown to be compromised due to lack of transparency regarding treatment goals.LimitationsThis review did not include articles in languages other than English. Cumulative evidence could not be produced due to the small number of included studies and the diversity of contexts, theories and data types.Conclusions and implications of key findingsThere is a paucity of systematic research on naturally occurring clinical communication in IBD and its effect on outcomes. Further research needs to be done to address this knowledge gap.Prospero registration numberCRD42020169657.

Dataset Information

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

Background

Results

Conclusion

Publications

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

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