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 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 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.

scholarly journals Relational continuity and patients’ perception of GP trust and respect: a qualitative study

2020 ◽  
Vol 70 (698) ◽  
pp. e676-e683 ◽  
Author(s):  
Mairead Murphy ◽  
Chris Salisbury
Keyword(s):  
Qualitative Study ◽  
Safety Issue ◽  
Secondary Analysis ◽  
Patient Reported Outcome ◽  
Healthcare Team ◽  
Long Term Conditions ◽  
Safety Issues ◽  
Relational Continuity ◽  
Patient Reported

BackgroundDespite the benefits of relational continuity of care, particularly for patients with multimorbidity, the traditional model of continuity is changing. Revisiting what patients with ongoing problems want from relational continuity could encourage initiatives to achieve these within a modern healthcare system.AimTo examine the attributes of GPs that patients with long-term conditions value most, and which attributes patients believe are facilitated by relational continuity.Design and settingQualitative study in UK general practice.MethodA thematic analysis was carried out, based on secondary analysis of interviews with 25 patients with long-term conditions that were originally conducted to inform a patient-reported outcome measure for primary care.ResultsPatients with long-term conditions wanted their GPs to be clinically competent, to examine, listen to, care for, and take time with them, irrespective of whether they have seen them before. They believed that relational continuity facilitates a GP knowing their history, giving consistent advice, taking responsibility and action, and trusting and respecting them. Patients acknowledged practical difficulties and safety issues in achieving the first three of these without relational continuity. However, patients felt that GPs should trust and respect them even when continuity was not possible.ConclusionPolicy initiatives promoting continuity with a GP or healthcare team should continue. Many patients see continuity as a safety issue. When patients experience relationship discontinuity, they often feel that they are not taken seriously or believed by their GP. GPs should therefore consistently seek to visibly demonstrate trust in their patients, particularly when they have not seen them before.

scholarly journals A scoping review of registry captured indicators for evaluating quality of critical care in ICU

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Issrah Jawad ◽  
Sumayyah Rashan ◽  
Chathurani Sigera ◽  
Jorge Salluh ◽  
Arjen M. Dondorp ◽  
...  
Keyword(s):  
Critical Care ◽  
Scoping Review ◽  
Health Care Quality ◽  
Grey Literature ◽  
Healthcare Providers ◽  
Evidence Base ◽  
Patient Reported Outcome ◽  
Care Quality ◽  
Patient Reported

Abstract Background Excess morbidity and mortality following critical illness is increasingly attributed to potentially avoidable complications occurring as a result of complex ICU management (Berenholtz et al., J Crit Care 17:1-2, 2002; De Vos et al., J Crit Care 22:267-74, 2007; Zimmerman J Crit Care 1:12-5, 2002). Routine measurement of quality indicators (QIs) through an Electronic Health Record (EHR) or registries are increasingly used to benchmark care and evaluate improvement interventions. However, existing indicators of quality for intensive care are derived almost exclusively from relatively narrow subsets of ICU patients from high-income healthcare systems. The aim of this scoping review is to systematically review the literature on QIs for evaluating critical care, identify QIs, map their definitions, evidence base, and describe the variances in measurement, and both the reported advantages and challenges of implementation. Method We searched MEDLINE, EMBASE, CINAHL, and the Cochrane libraries from the earliest available date through to January 2019. To increase the sensitivity of the search, grey literature and reference lists were reviewed. Minimum inclusion criteria were a description of one or more QIs designed to evaluate care for patients in ICU captured through a registry platform or EHR adapted for quality of care surveillance. Results The search identified 4780 citations. Review of abstracts led to retrieval of 276 full-text articles, of which 123 articles were accepted. Fifty-one unique QIs in ICU were classified using the three components of health care quality proposed by the High Quality Health Systems (HQSS) framework. Adverse events including hospital acquired infections (13.7%), hospital processes (54.9%), and outcomes (31.4%) were the most common QIs identified. Patient reported outcome QIs accounted for less than 6%. Barriers to the implementation of QIs were described in 35.7% of articles and divided into operational barriers (51%) and acceptability barriers (49%). Conclusions Despite the complexity and risk associated with ICU care, there are only a small number of operational indicators used. Future selection of QIs would benefit from a stakeholder-driven approach, whereby the values of patients and communities and the priorities for actionable improvement as perceived by healthcare providers are prioritized and include greater focus on measuring discriminable processes of care.

312 Retrospective Analysis of Long-Term Scarring Outcomes in Paediatric Burns Patients

2021 ◽  
Vol 108 (Supplement_6) ◽  
Author(s):  
R Mistry
Keyword(s):  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Burn Patients ◽  
Burn Scar ◽  
Common Presentation ◽  
Paediatric Burns ◽  
Significant Difference ◽  
Patient Reported

Abstract Introduction Paediatric burns are a common presentation to a plastic surgery unit. The long-term scar outcomes in paediatric burns patients are relatively unknown as most are discharged after 6 weeks follow up. We aimed to determine whether the long-term scarring outcomes are significantly different in those who had surgical treatment with Versajetâ debridement and Biobraneâ, versus those treated conservatively with non-adherent dressings, in a cohort of paediatric burns patients. Method The parents of all paediatric burns patients admitted to Stoke Mandeville Hospital from October 2014 to September 2017 were contacted by telephone to fill in the Brisbane Burn Scar Impact Profile (BBSIP), a patient reported outcome measure specifically aimed at children. The results from the questionnaires underwent statistical analysis to see if there was a significant difference in questionnaire scores between children treated surgically versus those treated conservatively. Results A total of 107 children were admitted in the timeframe, responses were received from 34 patients with 13 having been treated surgically and 21 having been treated conservatively. In all 58 questions that make up the BBSIP, there was no statistically significant difference observed in the scores of those treated surgically versus those treated conservatively. For 31 questions on the BBSIP, the lowest score indicating the best outcome was observed in all patients in both groups. Conclusions We found no statistically significant difference in the long-term scar outcomes as assessed by the BBSIP in paediatric burn patients treated with Versajetâ debridement and Biobraneâ, versus those treated conservatively with non-adherent dressings.

Coverage of symptomatic toxicities from the common terminology criteria for adverse events (CTCAE) framework within the european organization for research and treatment of cancer (EORTC) item library.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24117-e24117
Author(s):  
Claire Piccinin ◽  
Andrew Bottomley ◽  
Galina Velikova ◽  
Mogens Groenvold ◽  
Dagmara Kuliś ◽  
...  
Keyword(s):  
Well Being ◽  
Routine Care ◽  
Patient Reported Outcome ◽  
Satisfaction With Care ◽  
Emotional Impact ◽  
Coding System ◽  
European Organization ◽  
Additional Information ◽  
Care Services ◽  
Patient Reported

e24117 Background: The EORTC Item Library is an online, interactive platform comprised of 950 distinct questions (items) from 67 different EORTC patient-reported outcome (PRO) questionnaires, covering a range of symptomatic toxicities, types of functioning, and impact on quality of life. These PROs provide a patient-centred perspective, complementing clinician adverse event (AE) reporting using classifications like the CTCAE. In order to summarize the coverage of symptomatic toxicities and facilitate the identification of items through use of a standardized framework, a mapping study was carried out, aimed at creating a coding system to classify EORTC items according to the CTCAE and link them to corresponding AEs. Methods: All items were searched for within the CTCAE (v5.0) using a deductive approach. Items were coded as linked if they were described within an AE’s title, description, or grading. Items not suitable for CTCAE coding were inductively assigned a descriptive classification. Descriptive classifications were also applied along with CTCAE codes when they provided additional information. Symptoms described in EORTC items but not located in the CTCAE were coded as missing and additional codes were assigned to highlight EORTC items capturing multiple underlying issues and diagnosis only CTCAE codes. Two raters independently coded 249 items and agreement was calculated. The remaining 701 items were coded by one rater and verified by the second, with a third introduced to discuss any discrepancies until a consensus was reached. Results: Agreement for raters following independent coding was 77.9% for at least one AE per item. In total, 625 (65.8%) items were linked to 208 different AEs. Fatigue was the most commonly linked AE, representing 4.9% of linked AEs. The majority of linked items were associated with one (65.6%) or two (23.5%) AEs, with some linked to three or more (10.9%). Multiple linkage resulted from different symptoms relating to the same issue/diagnosis or one symptom relating to multiple diagnoses. Two symptoms captured by six EORTC items but not found in the CTCAE were identified: bowel urgency and tenesmus. Seven descriptive non-CTCAE classifications emerged, with most of these covering the emotional impact of symptom, diagnosis, or treatment (33.6%) and information/satisfaction with care (31.7%). Nineteen items (2%) were linked to multiple underlying issues, and 43 (4.5%) to diagnosis only CTCAE codes. Conclusions: The EORTC Item Library provides extensive coverage of CTCAE symptomatic toxicities, along with other issues that are important to cancer patients, including emotional well-being and satisfaction with care services. Classifying symptomatic PRO items following the CTCAE clinical framework may facilitate future PRO selection and use in clinical trials and routine care.

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