scholarly journals Eliciting the impact of digital consulting for young people living with long term conditions (LYNC study): which Patient Reported Outcome Measure? (Preprint)

2018 ◽  
Author(s):  
Jackie Sturt ◽  
Rebecca Dliwayo ◽  
Vera Forjaz ◽  
Kathryn Hamilton ◽  
Carol Bryce ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Young People ◽  
Patient Reported Outcome ◽  
Clinical Psychologist ◽  
Long Term Conditions ◽  
Face To Face ◽  
Scoping Reviews ◽  
Patient Reported ◽  
The Impact

BACKGROUND Digital consulting e.g. email, text and skype is increasingly offered to young people accessing specialist care for long term conditions. No patient reported outcome measures (PROM) have been evaluated for assessing outcomes of digital consulting. Systematic and scoping reviews, alongside patient involvement revealed two candidate PROMs for this purpose, the Patient Activation Measure (PAM) and the Physician’s Humanistic Behaviours Questionnaire (PHBQ). PAM measures knowledge, beliefs and skills that enable people to manage their long term condition. The PHBQ measures the extent to which behaviours that are important to patients in their physician-patient interactions are present. OBJECTIVE To explore i) whether the PAM and the PHBQ elicit important outcomes of digital consulting ii) whether the PROMs can isolate the digital consultation component of care. METHODS Participants were drawn from five clinics providing specialist NHS care to 16-24yrs olds with long term health conditions participating in the wider LYNC study. Fourteen people were convenience sampled and consented to have a cognitive interview in this sub-study. Seven participants were young people with either inflammatory bowel disease, cystic fibrosis or cancer. Seven clinicians were clinical psychologist, two nurses, three consultants and a community youth worker practising in Cancer, Diabetes, Cystic Fibrosis and Liver disease. Cognitive interviews were transcribed and analysed and a spread sheet recorded participants’ PROM item appraisals. Illustrative quotes were extracted verbatim from the interviews for all participants. RESULTS Young people found 10 of the PAM 13 items to be relevant to digital consulting and fewer of the additional PAM 22 items. They were only able to provide a spontaneous examples of digital consulting for 50% of the 22 items. Four of the 6 clinicians appraised 12 of the PAM 13 items and 19 of the PAM 22 items to be relevant to evaluating digital consulting and articulated operationalisation of the items with reference to their own digital consulting practice with greater ease than the young people. Appraising the PHBQ, in 14 of the 25 items (56%) 2/3rds of young people’s appraisals offered digital consulting examples with ease suggesting that the young people can detect and discern humanistic clinician behaviours via digital as well as face to face communication channels. Seventeen of the 25 items (68%) were appraised as relevant by the young people. This finding was mirrored in the clinician appraisals. Both young people and clinicians found the research task complex. Young participants required considerably more researcher prompting to illicit examples related to digital consulting rather than their face to face care. CONCLUSIONS The PAM and the PHBQ have satisfactory face and content validity for evaluating digital consulting to warrant proceeding to psychometric evaluation. Completion instructions require revision to differentiate between digital and face to face consultations.

Do patient and proxy agree? Long-term changes in multiple sclerosis physical impact and walking ability on patient-reported outcome scales

2014 ◽  
Vol 20 (12) ◽  
pp. 1616-1623 ◽  
Author(s):  
Judith M Sonder ◽  
Lisanne J Balk ◽  
Libertje VAE Bosma ◽  
Chris H Polman ◽  
Bernard MJ Uitdehaag
Keyword(s):  
Multiple Sclerosis ◽  
Patient Reported Outcome ◽  
Study Data ◽  
Walking Ability ◽  
Impact Scale ◽  
Patient Reported ◽  
Proxy Responses ◽  
Physical Impact ◽  
The Impact

Background: Patient-reported outcome scales (PROs) are useful in monitoring changes in multiple sclerosis (MS) over time. Although these scales are reliable and valid measures in longitudinal studies in MS patients, it is unknown what the impact is when obtaining longitudinal data from proxies. Objective: The objective of this paper is to compare longitudinal changes in patient and proxy responses on PROs assessing physical impact of MS and walking ability. Methods: In a prospective observational study, data on the Multiple Sclerosis Impact Scale (MSIS-29 physical) and Multiple Sclerosis Walking Scale (MSWS-12) were obtained from 137 patient-proxy couples at baseline and at two-year follow-up. Demographic and disease-related variables explaining agreement or disagreement between patients and proxies were investigated using linear regression analyses. Results: Full agreement was found in 56% (MSIS) and 62% (MSWS) of the patient-proxy couples. Complete disagreement was very rare for both scales (2% MSIS, 5% MSWS). When patients were more positive than proxies, a higher age, longer disease duration, longer patient-proxy relationship and increased levels of depression, anxiety and caregiver burden in proxies were observed. Conclusion: In the majority of the patient-proxy couples there was agreement. Proxies can serve as a valuable source of information, but caution remains essential when using scores from proxies.

scholarly journals How does the use of digital consulting change the meaning of being a patient and/or a health professional? Lessons from the Long-term Conditions Young People Networked Communication study

2020 ◽  
Vol 6 ◽  
pp. 205520762094235
Author(s):  
Jackie Sturt ◽  
Caroline Huxley ◽  
Btihaj Ajana ◽  
Caitjan Gainty ◽  
Chris Gibbons ◽  
...  
Keyword(s):  
Young People ◽  
Medical Ethics ◽  
Health Professional ◽  
Health Professionals ◽  
Access To Healthcare ◽  
Small Sample ◽  
Interview Data ◽  
Long Term Conditions ◽  
The Impact

Background While studies have examined the impact of digital communication technology on healthcare, there is little exploration of how new models of digital care change the roles and identities of the health professional and patient. The purpose of the current study is to generate multidisciplinary reflections and questions around the use of digital consulting and the way it changes the meaning of being a patient and/or a health professional. Method We used a large pre-existing qualitative dataset from the Long-term Conditions Young People Networked Communication (LYNC) study which involved interviews with healthcare professionals and a group of 16–24 years patients with long-term physical and mental health conditions. We conducted a three-stage mixed methods analysis. First, using a small sample of interview data from the LYNC study, we identified three key themes to explore in the data and relevant academic literature. Second, in small groups we conducted secondary analysis of samples of patient and health professional LYNC interview data. Third, we ran a series of rapid evidence reviews. Findings We identified three key themes: workload/flow, impact of increased access to healthcare and vulnerabilities. Both health professionals and patients were 'on duty' in their role more often. Increased access to healthcare introduced more responsibilities to both patients and health professionals. Traditional concepts in medical ethics, confidentiality, empathy, empowerment/power, efficiency and mutual responsibilities are reframed in the context of digital consulting. Conclusions Our collaboration identified conflicts and constraints in the construction of digital patients and digital clinicians. There is evidence that digital technologies change the nature of a medical consultation and with it the identities and the roles of clinicians and patients which, in turn, calls for a redefinition of traditional concepts of medical ethics. Overall, digital consulting has the potential to significantly reduce costs while maintaining or improving patient care and clinical outcomes. Timely study of digital engagement in the National Health Service is a matter of critical importance.

scholarly journals The routine collection of patient-reported outcome measures (PROMs) for long-term conditions in primary care: a cohort survey

BMJ Open ◽  
2014 ◽  
Vol 4 (2) ◽  
pp. e003968 ◽  
Author(s):  
Michele Peters ◽  
Helen Crocker ◽  
Crispin Jenkinson ◽  
Helen Doll ◽  
Ray Fitzpatrick
Keyword(s):  
Primary Care ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Long Term Conditions ◽  
Patient Reported

scholarly journals 280 The Use of Telemedicine in Plastics Surgery During COVID-19: A Single-Centre Correlation Study with Patient Reported Outcome Measures

2021 ◽  
Vol 108 (Supplement_6) ◽  
Author(s):  
D Rojoa ◽  
F Raheman ◽  
A Ibrahim ◽  
N Patel
Keyword(s):  
Wound Care ◽  
Fold Increase ◽  
Wound Complication ◽  
Patient Reported Outcome Measures ◽  
Correlation Study ◽  
Patient Reported Outcome ◽  
Complication Rates ◽  
Face To Face ◽  
Patient Reported ◽  
The Impact

Abstract Aim With enforcement of social distancing measures during the COVID-19 pandemic, face-to-face patient contact was shifted to telemedicine consultations. There is limited evidence evaluating patient experience of follow-ups and expectations into quality metrics. Our aim was to perform a service evaluation by prospectively evaluating the management and outcomes of plastic surgery patients. Method Patients were consecutively assessed over the COVID-19 lockdown period, from March to May 2020. They ranged from urgent cancer cases to burns and trauma. We used a questionnaire to evaluate initial treatment, wound care, complications, and overall service. A validated health-related quality of life (HRQL) survey was used to assess the impact of injury or wound on lifestyle and we also assessed patient enablement. Correlation analysis determined relationships between outcomes, service evaluations and HRQL variables. Results 77 patients were consecutively treated in our unit, of which 46 completed the questionnaire. 42.2% used multimedia as mode of follow-up, including smart phones for messages and videocalls, and trust e-mails. There was a 3-fold increase in number of infections for non-face-to-face consultations, with a correlation significance of 0.043. We found no correlation between age and wound complication rates. 72.7% of patients found overall service very good or excellent. Although overall service satisfaction was similar for multimedia use and face-to-face consultations (p = 0.02), less patients were confident looking after their wound without face-to-face follow-ups. Conclusions COVID-19 has brought upon an unprecedented change in practice in our department. Implementing multimedia use and educating patients on wound care can significantly improve efficiency and service provision.

scholarly journals Development and validation of a new patient-reported outcome measure for peripheral nerve disorders of the hand, the I-HaND© Scale

2018 ◽  
Vol 43 (8) ◽  
pp. 864-874 ◽  
Author(s):  
Mark Ashwood ◽  
Christina Jerosch-Herold ◽  
Lee Shepstone
Keyword(s):  
Outcome Measure ◽  
Intraclass Correlation ◽  
Principal Component ◽  
Patient Reported Outcome ◽  
Face To Face ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Test Retest Reliability ◽  
Development And Validation ◽  
The Impact

Following guidelines from the Patient-Centred Outcomes Research Institute and using a mixed methods study, a new patient-reported outcome measure (PROM) for both nerve trauma and compression affecting the hand, the Impact of a Hand Nerve Disorders (I-HaND) Scale, was developed. Face-to-face interviews with 14 patients and subsequent pilot-testing with 61 patients resulted in the development of the 32-item PROM. A longitudinal validation study with 82 patients assessed the psychometric properties of the I-HaND. Content and construct validity was confirmed by cognitive interviews with patients and through principal component analysis. The I-HaND has high internal consistency (α = 0.98) and excellent test–retest reliability (intraclass correlation coefficient = 0.97). Responsiveness statistics showed that the I-HaND can detect change over 3 months and discriminate between improvers and non-improvers. We conclude that the I-HaND can be used as a PROM for people with a range of hand nerve disorders.

scholarly journals Patients’ reasons for non-use of digital patient-reported outcome concepts: A scoping review

2020 ◽  
Vol 26 (4) ◽  
pp. 2811-2833
Author(s):  
Amalie Søgaard Nielsen ◽  
Kristian Kidholm ◽  
Lars Kayser
Keyword(s):  
Scoping Review ◽  
Empirical Studies ◽  
Routine Care ◽  
Patient Reported Outcome ◽  
Literature Study ◽  
Long Term Conditions ◽  
Patient Reported ◽  
Study Population ◽  
Unites States

Data from digitally administered patient reported outcomes (PROs) is used more and more in routine healthcare for long-term conditions as a part of daily clinical practice. This literature study reviews empirical studies of digital PRO to examine patients’ reasons for non-use of digitally administered PRO data in routine care. This scoping review searched through PubMed, Embase, Web of Science and PsycINFO databases, reporting on study population, intervention, duration of intervention and motivational factors alongside stated reasons for nonparticipation or dropout for each study. The patients’ reasons for not participating, either from study start or by dropout, were analysed through a thematic approach. Fifty-one studies were included, published from 2010 to 2019, mostly from Europe and the Unites States covering different long-term conditions. The reasons for non-use are manifold and cover the themes of ability to use PRO, engagement, emotional distress and technical barriers. Several reasons are given explaining why patients with long-term conditions are not using digitally administered PRO as intended. This should be taken into account in the design phase of digital PRO interventions and considered in conversations with patients during the intervention.

scholarly journals A systematic evidence synthesis of interventions to engage children and young people in consultations about their long-term conditions

2017 ◽  
Vol 22 (1) ◽  
pp. 122-146 ◽  
Author(s):  
Lucy Bray ◽  
Michelle Maden ◽  
Toni Bewley ◽  
Bernie Carter
Keyword(s):  
Young People ◽  
Evidence Synthesis ◽  
Grey Literature ◽  
Long Term Conditions ◽  
Children And Young People ◽  
Face To Face ◽  
Related Information ◽  
Systematic Development

Children and young people with long-term conditions are not always provided with opportunities to engage fully in consultations. This systematic review examined the effectiveness or worth of methods used to engage children and young people with long-term conditions in their consultations. Searches were undertaken in October 2016 in eight databases and of the grey literature. Two reviewers independently screened the results, extracted data and assessed the quality of the studies using a validated and reliable checklist. A narrative synthesis of mixed method data was undertaken. Twelve studies were included in the review. Interventions used to engage children and young people mainly focused on face-to-face outpatient consultations, with an emphasis on diabetes and asthma. Most of the interventions focused on either improving health professionals’ communication skills or encouraging children’s and young people’s engagement through providing condition-related information or a structured way to be included in consultations. Fewer interventions were child-led or directed towards developing children’s and young people’s skills to become key reporters of their condition. This review has demonstrated that interventions targeted at children and young people with long-term conditions can improve their levels of engagement in consultations. There is a need for more systematic development and robust evaluation of interventions to improve children’s active participation in consultations.

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