Mo1089 Social Media Ethnography of GERD Patients Yields Similar Results to Traditional Focus Groups in Developing a Patient Reported Outcome

2015 ◽  
Vol 148 (4) ◽  
pp. S-602
Author(s):  
Jonathan S. Pourmorady ◽  
Bibiana M. Martinez ◽  
Garth Fuller ◽  
Michael D. Baek ◽  
Cynthia B. Whitman ◽  
...  
Keyword(s):  
Social Media ◽  
Focus Groups ◽  
Patient Reported Outcome ◽  
Media Ethnography ◽  
Patient Reported

scholarly journals Training to enhance user and carer involvement in mental health-care planning: the EQUIP research programme including a cluster RCT

2019 ◽  
Vol 7 (9) ◽  
pp. 1-140 ◽  
Author(s):  
Karina Lovell ◽  
Penny Bee ◽  
Peter Bower ◽  
Helen Brooks ◽  
Patrick Cahoon ◽  
...  
Keyword(s):  
Mental Health ◽  
Focus Groups ◽  
Service User ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Training Intervention ◽  
Service Users ◽  
Care Planning ◽  
Audit Tool ◽  
Patient Reported

Background Service users and carers using mental health services want more involvement in their care and the aim of this research programme was to enhance service user and carer involvement in care planning in mental health services. Objectives Co-develop and co-deliver a training intervention for health professionals in community mental health teams, which aimed to enhance service user and carer involvement in care planning. Develop a patient-reported outcome measure of service user involvement in care planning, design an audit tool and assess individual preferences for key aspects of care planning involvement. Evaluate the clinical effectiveness and the cost-effectiveness of the training. Understand the barriers to and facilitators of implementing service user- and carer-involved care planning. Disseminate resources to stakeholders. Methods A systematic review, focus groups and interviews with service users/carers/health professionals informed the training and determined the priorities underpinning involvement in care planning. Data from focus groups and interviews were combined and analysed using framework analysis. The results of the systematic review, focus groups/interviews and a review of the training interventions were synthesised to develop the final training intervention. To develop and validate the patient-reported outcome measure, items were generated from focus groups and interviews, and a psychometric analysis was conducted. Patient-reported outcome measure items and a three-round consensus exercise were used to develop an audit tool, and a stated preference survey was undertaken to assess individual preferences for key aspects of care planning. The clinical effectiveness and cost-effectiveness of the training were evaluated using a pragmatic cluster trial with cohort and cross-sectional samples. A nested longitudinal qualitative process evaluation using multiple methods, including semistructured interviews with key informants involved locally and nationally in mental health policy, practice and research, was undertaken. A mapping exercise was used to determine current practice, and semistructured interviews were undertaken with service users and mental health professionals from both the usual-care and the intervention arms of the trial at three time points (i.e. baseline and 6 months and 12 months post intervention). Results The results from focus groups (n = 56) and interviews (n = 74) highlighted a need to deliver training to increase the quality of care planning and a training intervention was developed. We recruited 402 participants to develop the final 14-item patient-reported outcome measure and a six-item audit tool. We recruited 232 participants for the stated preference survey and found that preferences were strongest for the attribute ‘my preferences for care are included in the care plan’. The training was delivered to 304 care co-ordinators working in community mental health teams across 10 NHS trusts. The cluster trial and cross-sectional survey recruited 1286 service users and 90 carers, and the primary outcome was the Health Care Climate Questionnaire. Training was positively evaluated. The results showed no statistically significant difference on the primary outcome (the Health Care Climate Questionnaire) (adjusted mean difference –0.064, 95% confidence interval –0.343 to 0.215; p = 0.654) or secondary outcomes at the 6-month follow-up. Overall, the training intervention was associated with a net saving of –£54.00 (95% confidence interval –£193.00 to £84.00), with a net quality-adjusted life-year loss of –0.014 (95% confidence interval –0.034 to 0.005). The longitudinal process evaluation recruited 54 service users, professionals and carers, finding a failure of training to become embedded in routine care. Limitations Our pragmatic study was designed to improve service user and care involvement in care planning among routine community mental health services. We intervened in 18 sites with > 300 care co-ordinators. However, our volunteer sites may not be fully representative of the wider population, and we lacked data with which to compare our participants with the eligible population. Conclusions We co-developed and co-delivered a training intervention and developed a unidimensional measure of service user and carer involvement in care planning and an audit tool. Despite a high level of satisfaction with the training, no significant effect was found; therefore, the intervention was ineffective. There was a failure of training to become embedded and normalised because of a lack of organisational readiness to accept change. Working with NHS trusts in our ‘Willing Adopters’ programme with enhanced organisational buy-in yielded some promising results. Future work Research should focus on developing and evaluating new organisational initiatives in addition to training health-care professionals to address contextual barriers to service and carer involvement in care planning, and explore co-designing and delivering new ways of enhancing service users’ and carers’ capabilities to engage in care planning. Trial registration Current Controlled Trials ISRCTN16488358. Funding This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 7, No. 9. See the NIHR Journals Library website for further project information.

Patients’ Experience of Myositis and Further Validation of a Myositis-specific Patient Reported Outcome Measure — Establishing Core Domains and Expanding Patient Input on Clinical Assessment in Myositis. Report from OMERACT 12

2015 ◽  
Vol 42 (12) ◽  
pp. 2492-2495 ◽  
Author(s):  
Malin Regardt ◽  
Pari Basharat ◽  
Lisa Christopher-Stine ◽  
Catherine Sarver ◽  
Anita Björn ◽  
...  
Keyword(s):  
Focus Groups ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cognitive Debriefing ◽  
Specific Patient ◽  
Patient Reported ◽  
Group Interviews ◽  
Patients Experience ◽  
Continue Work

Objective.The Outcome Measures in Rheumatology (OMERACT) myositis working group was established to examine patient-reported outcomes (PRO) as well as to validate patient-reported outcome measures (PROM) in myositis.Methods.Qualitative studies using focus group interviews and cognitive debriefing of the myositis-specific Myositis Activities Profile (MAP) were used to explore the experience of adults living with polymyositis (PM) and dermatomyositis (DM).Results.Preliminary results underscore the importance of patient input in the development of PROM to ensure content validity. Results from multicenter focus groups indicate the range of symptoms experienced including pain, fatigue, and impaired cognitive function, which are not currently assessed in myositis. Preliminary cognitive debriefing of the MAP indicated that while content was deemed relevant and important, several activities were not included; and that questionnaire construction and wording may benefit from revision. A research agenda was developed to continue work toward optimizing PRO assessment in myositis with 2 work streams. The first would continue to conduct and analyze focus groups until saturation in the thematic analysis was achieved to develop a framework that encompassed the patient-relevant aspects of myositis. The second would continue cognitive debriefing of the MAP to identify potential areas for revision. There was agreement that further work would be needed for inclusion body myositis and juvenile dermatomyositis, and that the inclusion of additional contributors such as caregivers and individuals from the pharmaceutical/regulatory spheres would be desirable.Conclusions.The currently used PROM do not assess symptoms or the effects of disease that are most important to patients; this emphasizes the necessity of patient involvement. Our work provides concrete examples for PRO identification.

scholarly journals Young people’s perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force

RMD Open ◽  
2021 ◽  
Vol 7 (1) ◽  
pp. e001517
Author(s):  
Erika Mosor ◽  
Paul Studenic ◽  
Alessia Alunno ◽  
Ivan Padjen ◽  
Wendy Olsder ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Young People ◽  
Qualitative Study ◽  
Focus Groups ◽  
Outcome Measures ◽  
Inflammatory Arthritis ◽  
Positive Attitude ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

IntroductionAlthough patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.MethodsA multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still’s disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18–35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.ResultsFifty-three patients (21 with RA/JIA/Still’s, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.ConclusionsDespite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.

scholarly journals What narrative devices do people with systemic sclerosis use to describe the experience of pain from digital ulcers: a multicentre focus group study at UK scleroderma centres

BMJ Open ◽  
2020 ◽  
Vol 10 (6) ◽  
pp. e037568
Author(s):  
Jennifer Jones ◽  
Michael Hughes ◽  
John Pauling ◽  
Rachael Gooberman-Hill ◽  
Andrew J Moore
Keyword(s):  
Systemic Sclerosis ◽  
Focus Group ◽  
Focus Groups ◽  
Patient Experience ◽  
Patient Reported Outcome ◽  
Digital Ulcers ◽  
Group Setting ◽  
Focus Group Study ◽  
Psychological Reactions ◽  
Patient Reported

ObjectivesDigital ulcers (DUs) are a common complication in systemic sclerosis (SSc). No existing studies have specifically reported on the qualitative patient experience of DU pain, and our current patient-reported outcome measure (PROM) does not capture the multifaceted painful experience of SSc-DU. Our aim was to examine the patient experience of SSc-DU pain.DesignFocus groups with people diagnosed with SSc who had experienced DUs were conducted using a topic guide developed by people with SSc, experts in SSc and experienced qualitative researchers. Focus groups were continued until data saturation had been reached. The focus groups were audio recorded, transcribed verbatim, anonymised and analysed using inductive thematic analysis. Our current study is an integration of the data from these focus groups to specifically examine the patient experience of DU pain.SettingThree specialist scleroderma units across the UK (Bath, Manchester and London).ParticipantsFour focus groups were undertaken; 29 adults (20 women, 9 men) with SSc and a spectrum of historical DUs participated. We included participants with a diverse demographic (including ethnic) background and disease-related characteristics.ResultsFive narrative devices were identified, which encompass how people describe the pain from SSc-DUs: ‘Words to express DU-associated pain’, ‘Descriptions of physical and psychological reactions to pain’, ‘Comparisons with other painful events’, ‘Descriptions of factors that exacerbate pain’ and ‘Descriptions of strategies for coping with the pain’.ConclusionThe experience of SSc-DU pain leads to the use of graphic language and rich description by participants in the focus group setting. Existing SSc-DU outcomes do not adequately capture the patient experiences of SSc-DU pain. Our findings further highlight the multifaceted nature of SSc-DUs and will hopefully support the development of a novel PROM to assess the severity and impact of SSc-DUs.

scholarly journals Unmet needs and recommendations to improve meningioma care through patient, partner, and health care provider input: a mixed-method study

2019 ◽  
Author(s):  
Amir H Zamanipoor Najafabadi ◽  
Johannes P M van de Mortel ◽  
Daniel J Lobatto ◽  
Dieta R Brandsma ◽  
Wilco C Peul ◽  
...  
Keyword(s):  
Health Care ◽  
Focus Groups ◽  
Health Care Providers ◽  
Unmet Needs ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Theory Approach ◽  
Care Providers ◽  
Patient Centered ◽  
Patient Reported

Abstract Background It has been suggested that lack of ongoing registration of patient-centered outcomes has resulted in existing care trajectories that have not been optimized for sequelae experienced by meningioma patients. This study aimed to evaluate the structure of current meningioma care and identify issues and potential high-impact improvement initiatives. Methods Using the grounded theory approach, a thematic framework was constructed based on the Dutch Comprehensive Cancer Organisation survey about issues in meningioma care trajectories. This framework was used during 3 semistructured interviews and 2 focus groups with patient-partner dyads (n = 16 participants), and 2 focus groups with health care providers (n = 11 participants) to assess issues in current meningioma care trajectories and possible solutions, including barriers to and facilitators for implementation. Results Identified issues (n = 18 issues) were categorized into 3 themes: availability and provision of information, care and support, and screening for (neurocognitive) rehabilitation. A lack of information about the intervention and possible outcomes or complications, lack of support after treatment focusing on bodily and psychological functions, and reintegration into society were considered most important. Sixteen solutions were suggested, such as appointment of case managers (solution for 11/18 issues, 61%), assessment and treatment by physiatrists (22%), and routine use of patient-reported outcome measures for patient monitoring (17%). Barriers for these solutions were lack of budget, capacity, technology infrastructure, and qualified personnel with knowledge about issues experienced by meningioma patients. Conclusions This study identified issues in current multidisciplinary meningioma care that are considered unmet needs by patients, partners, and health care providers and could guide innovation of care.

Patient-reported outcome measures for patients with cerebral aneurysms acquired via social media: data from a large nationwide sample

2014 ◽  
Vol 8 (1) ◽  
pp. 42-46 ◽  
Author(s):  
Michael Chen ◽  
Erwin Mangubat ◽  
Bichun Ouyang
Keyword(s):  
Social Media ◽  
Cerebral Aneurysm ◽  
Outcome Measures ◽  
Study Design ◽  
Cerebral Aneurysms ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Physical Impairment ◽  
Patient Reported ◽  
Over Time

BackgroundWith greater survival rates, patient-reported outcome measures (PROMs) among survivors of ruptured cerebral aneurysm should be an increasing concern among neurointerventionalists. Prior studies were limited in scale and generalizability. Our study aims were to (1) evaluate the validity of cerebral aneurysm PROMs obtained from social media; (2) determine the persistence of PROMs over time; and (3) determine what PROMs still exist in those with no physical impairments.MethodsBy engaging national brain aneurysm support groups and using an online questionnaire modeled after the generic EQ-5D instrument, we asked respondents to classify their health in five dimensions including mobility, self-care, usual activities, pain/discomfort, and anxiety/depression using a 3-point Likert scale.ResultsIn 2 months we received 604 responses from 46 states in the USA. Our cohort of ruptured aneurysm respondents reported PROMs similar to previously published series. Over time, headache and anxiety improved while depression, level of exercise, and return to work remained unchanged. We found that memory worsened after 2 years. Among those without any physical impairment, rates of 20.6%, 14.9%, 12.6%, and 23% were seen for significant headaches, significant memory loss, significant depression, and sense of life being negatively affected, respectively.ConclusionsDespite this novel study design, we obtained results comparable to prior studies. These results suggest that many patients with ruptured cerebral aneurysms, regardless of whether they are >2 years after the event and/or free of physical impairment, struggle with a poor quality of life. The latency, scale, and low cost of this study design may accelerate future cerebral aneurysm PROM research.

Values of Retinoblastoma Survivors and Parents Regarding Treatment Outcomes: A Qualitative Study

2022 ◽  
Author(s):  
Ana Janic ◽  
Ajoy Vincent ◽  
Jennifer Stinson ◽  
Helen Dimaras
Keyword(s):  
Focus Groups ◽  
Treatment Outcomes ◽  
Treatment Success ◽  
Patient Reported Outcome Measures ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Cross Sectional ◽  
Specific Patient ◽  
Patient Reported ◽  
Sick Children

PURPOSE: Retinoblastoma is an aggressive pediatric eye cancer. Patient-reported outcome measures reveal important insights into how patients perceive their own health. Currently, there is no widely used or validated measure for assessment of retinoblastoma outcomes. The purpose of this research was to uncover which treatment outcomes that retinoblastoma survivors and their parents value, to inform the development of a future measure. METHODS: This qualitative, cross-sectional study included retinoblastoma survivors age 6 years and older and parents of retinoblastoma survivors. Participants who did not demonstrate fluency in English were excluded. Study participants participated in semistructured interviews or focus groups, either in person at The Hospital for Sick Children, Toronto, Canada, or through secure videoconference, between March 3, 2019, and January 25, 2020. Iterative rounds of opening coding, codebook development, and coresearcher analysis were used to identify key emergent themes and subthemes. RESULTS: Seventeen adults participated in six focus groups. Nine pediatric survivors participated in individual interviews. Four common themes emerged from all participant groups: (1) definition of treatment success, (2) enucleation—acceptance and challenges, (3) treatment outcomes to measure, and (4) need for outcome reporting. An additional, unique theme was identified in all pediatric discussions: worries and coping mechanisms. Treatment outcomes deemed valuable were related to the following domains: psychosocial outcomes, daily functioning, functional vision, retinoblastoma education, cosmetic outcomes, and secondary eye conditions. CONCLUSION: This study represents the first stage in the development of a retinoblastoma-specific patient-reported outcome measure. The findings reveal insight into what outcomes are valued by survivors after treatment and offer promise to improve outcomes assessment for retinoblastoma.

Sign in / Sign up

Export Citation Format

Share Document