Objectives
To establish the acceptability and feasibility of collecting daily patient-generated health data (PGHD) using smartphones and integrating PGHD into the electronic health record, using the example of RA.
Methods
The Remote Monitoring of RA smartphone app was co-designed with patients, clinicians and researchers using qualitative semi-structured interviews and focus groups, including selection of question sets for symptoms and disease impact. PGHD were integrated into the electronic health record of one hospital and available in graphical form during consultations. Acceptability and feasibility were assessed with 20 RA patients and two clinicians over 3 months. A qualitative evaluation included semi-structured interviews with patients and clinicians before and after using the app, and audio-recordings of consultations to explore impact on the consultation. PGHD completeness was summarized descriptively, and qualitative data were analysed thematically.
Results
Patients submitted data on a median of 91% days over 3 months. Qualitative analysis generated three themes: RA as an invisible disease; providing the bigger picture of RA; and enabling person-centred consultations. The themes demonstrated that the system helped render patients’ RA more visible by providing the ‘bigger picture’, identifying real-time changes in disease activity and capturing symptoms that would otherwise have been missed. Graphical summaries during consultations enabled a more person-centred approach whereby patients felt better able to participate in consultations and treatment plans.
Conclusion
Remote Monitoring of RA has uniquely integrated daily PGHD from smartphones into the electronic health record. It has delivered proof-of-concept that such integrated remote monitoring systems are feasible and can transform consultations for clinician and patient benefit.
A significant number of patients received specialist palliative care across multiple care settings. Late referral is associated with a single domain of care. General practitioner involvement supports patient care and death at home. Place of care and ease of transfer between care settings may be better indicators of the quality of care we provide.
Background: The use of complementary therapy has become increasingly integrated into specialist palliative care units (SPCUs). Objective: To evaluate patients' interest in and experience of complementary therapies during their inpatient stay in a SPCU. Method: All 179 patients admitted to the SPCU over a 3-month period were assessed on admission. Those deemed suitable to participate by the researcher/clinical nurse specialist were invited to participate in this research. A standardised paper questionnaire was completed by the participating patients. Results: 71 patients (40%) completed the study. Those excluded had cognitive impairment, fatigue, communication difficulties or were imminently dying. Some declined to participate. A variety of age groups and diagnoses were represented. Only 27% of participants had a previous experience of using complementary therapies in the past 12 months. The majority (52%) were ‘very interested’ in receiving complementary therapy, while 13% reported having ‘no interest’. Massage and reflexology were identified as the most popular forms of complementary therapy. The primary anticipated benefits associated with complementary therapy were relaxation and improvement in general wellbeing. Conclusion: This research has indicated a high level of interest in complementary therapies in the study population, across a wide age range regardless of diagnosis or level of disease.
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