- ICH GCP
- Registr klinických studií v USA
- Klinická studie NCT05435404
Qualitative Study Patient & Physician Experiences Botox COVID-19 (QualBotoxCov)
A Qualitative Research Study Into Patient, Carer and Physician Experiences of Spasticity Management Via Botulinum Toxin Treatment During and Post COVID-19 Pandemic. Perceptions, Opportunities and Barriers
During the COVID-19 pandemic and subsequent series of Lockdowns, clinic out-patient spasticity services were replaced with video based tele-consultation appointments, in order to reduce the potential risk of virus transmission between patients and clinicians in either direction. This meant that for an extensive period of time, this treatment could not be offered, and like many other specialist services, this resulted in a backlog of case referrals and an extensive clinic waiting list, where patient appointments and referrals were delayed by the pandemic.
There have been discussions in many professional network forums that have suggested that the necessary changes to appointments during the pandemic may have contributed to a build-up of pain and disability for patients who were unable to access spasticity management treatment when they needed it.
This research aims to gain insight and understanding of the individual experiences and perceptions of patients, carers and a physician who have been involved in spasticity treatment out-patient service clinics during and post COVID 19 pandemic. To do this, a qualitative research approach has been adopted and a group of 10 potential participants along with one consultant physician will be invited to participate in the study.
Participants will be provided with information on the research (Participant Information Sheet) and asked to provide written informed consent (Consent Form) in order to take part.
After providing consent, the participant will be interviewed via telephone. Data will be analysed using a thematic approach by the research team to identify the challenges, opportunities and barriers that may have been encountered during the pandemic and post pandemic period. All participants will be provided with a debrief document.
Přehled studie
Postavení
Detailní popis
The idea for this study came out of a shared online discussion between healthcare professionals, managers and the Principal Investigator during the last 18 months of the COVID-19 Pandemic period.
Aims and Objectives:
- To explore the different perceptions of risks associated with attending an Out-patient appointment for BoNT injection treatment by patients, carers and medical doctors, who routinely use BoNT for spasticity management.
- To identify potential barriers, which may be physical and/or psychological which influence choice and decision making by patients and doctors
- To gain insight and understanding of potential perceived harms versus benefits regarding treatment decision making process from different perspectives (patients and doctors)
- To gain insight and understanding of how attitudes and behaviours may have changed now because of COVID-19
- To invite consideration of how identified barriers might potentially be overcome.
- To invite ideas and perspectives on whether the development of a video-based spasticity assessment measurement tool could be of potential benefit in this regard.
- To generate research knowledge on the above via Thematic Analysis of the data which will enable insight and understanding of key issues identified.
- To create and support opportunities to share the research knowledge generated in this study with professional networks and neuro-rehabilitation communities throughout the UK and globally via research presentation events and publications.
- To enable the potential for clinical service improvement with the consideration of the research knowledge outputs generated by this project.
- To help create and support the building a research participant database for further relevant research in the future
Deliverable research outputs
Research knowledge on the perceptions, opportunities and barriers experienced by patients, carers and physician in relation to spasticity management treatment with Botulinum Toxin injection during and post COVID-19.
Research knowledge on the factors which influence patients', carers' and physician's individual perceptions of the risk versus benefit appraisal with regard to attending an Out-patient spasticity clinic.
Research knowledge on what potential strategies might help support and encourage patients in terms of communication and understanding of spasticity management
Research knowledge which establishes an evidence base of individual patient, carer and Physician experiences, which can inform the development of best practice guidelines for spasticity management and contribute to the design of a potential protocol to identify how patients could be prioritised for this type of treatment during any future pandemic.
Methodology.
The investigators have adopted a qualitative approach in order to enable in-depth insight and understanding to be gained from individual participants in order to understand participants' own experiences and perspectives (9). The theoretical framework used is based on the adoption of the constructivist paradigm, where it is understood that there are multiple realities, experienced by individuals, which are all equally valid and carry meaning for the individual. The investigators will use Thematic Analysis to organise and code the data and to enable us to develop emergent themes based on an inductive approach (10).
Methods. Sampling and recruitment. A purposive sample of participants will be invited to take part. These potential participants will be identified by the research team and will comprise patients, who have attended Dr Sakel's Out-patient spasticity clinics over the last 18 months. These clinics will include both video based and in person face to face clinics.
Potential participants will meet the following eligibility criteria:
- Adults aged 18 and over
- A diagnosis of severe spasticity who are recommended to have Botulinum Toxin injection treatment in East Kent Hospital University NHS Foundation Trust (EKHUFT) Out-patient clinics.
The investigators will aim to recruit a sample of 10 potential participants (patients and carers) and 1 Physician injector.
Study design and setting. Qualitative design with semi-structured interviews conducted by the co-investigator by telephone. Interviews will be audio-recorded and transcribed by the co-investigator. An interview topic guide will be used to support the structure of the interviews.
Interviews will be scheduled with eligible participants at mutually convenient dates and times.
It is anticipated that the length of preliminary interviews will vary depending on the individual. Participants may be interviewed on a number of occasions at mutually convenient times to enable in depth data gathering.
Schedule of research project time-line. Submission of protocol and documents for Ethical Approval via IRAS and HRA - September 2021 When approval is received, the team will start recruitment and the research. Recruitment of participants and interviews to be completed by mid-December 2021.
Data analysis will be conducted from 01/03/2022 to 01/04/2022. Preparation of report and abstract for potential conference submission by 30/04/2022.
Typ studie
Zápis (Aktuální)
Kontakty a umístění
Studijní místa
-
-
Kent
-
Canterbury, Kent, Spojené království, CT1 3NG
- East Kent Hospitals University NHS Trust
-
-
Kritéria účasti
Kritéria způsobilosti
Věk způsobilý ke studiu
Přijímá zdravé dobrovolníky
Pohlaví způsobilá ke studiu
Metoda odběru vzorků
Studijní populace
Popis
Inclusion Criteria:
• Adults aged 18 and over with a diagnosis of severe spasticity, who are recommended to have Botulinum Toxin injection treatment in East Kent Hospital University NHS Foundation Trust (EKHUFT) Out-patient clinics.
Exclusion Criteria:
- Adults aged 18 and over who do not have a diagnosis of severe muscle spasticity that requires treatment with Botulinum Toxin injection.
- Adults unable to provide informed consent
Studijní plán
Jak je studie koncipována?
Detaily designu
- Observační modely: Jiný
- Časové perspektivy: Retrospektivní
Co je měření studie?
Primární výstupní opatření
Měření výsledku |
Popis opatření |
Časové okno |
|---|---|---|
|
Interview with participant
Časové okno: 1 month
|
Telephone interview between member of research team and participant
|
1 month
|
Spolupracovníci a vyšetřovatelé
Vyšetřovatelé
- Vrchní vyšetřovatel: Mohamed Dr Sakel, MBBS, East Kent Hospitals University NHS Foundation Trust
Termíny studijních záznamů
Hlavní termíny studia
Začátek studia (Aktuální)
Primární dokončení (Aktuální)
Dokončení studie (Aktuální)
Termíny zápisu do studia
První předloženo
První předloženo, které splnilo kritéria kontroly kvality
První zveřejněno (Aktuální)
Aktualizace studijních záznamů
Poslední zveřejněná aktualizace (Aktuální)
Odeslaná poslední aktualizace, která splnila kritéria kontroly kvality
Naposledy ověřeno
Více informací
Termíny související s touto studií
Klíčová slova
Další relevantní podmínky MeSH
- Kardiovaskulární choroby
- Cévní onemocnění
- Cerebrovaskulární poruchy
- Onemocnění mozku
- Onemocnění centrálního nervového systému
- Nemoci nervového systému
- Onemocnění imunitního systému
- Demyelinizační autoimunitní onemocnění, CNS
- Autoimunitní onemocnění nervového systému
- Demyelinizační onemocnění
- Autoimunitní onemocnění
- Rány a zranění
- Poškození mozku, chronické
- Kraniocerebrální trauma
- Trauma, nervový systém
- Mrtvice
- Roztroušená skleróza
- Poranění mozku
- Poranění mozku, chronické
Další identifikační čísla studie
- EastKHT
Plán pro data jednotlivých účastníků (IPD)
Plánujete sdílet data jednotlivých účastníků (IPD)?
Popis plánu IPD
Informace o lécích a zařízeních, studijní dokumenty
Studuje lékový produkt regulovaný americkým FDA
Studuje produkt zařízení regulovaný americkým úřadem FDA
Tyto informace byly beze změn načteny přímo z webu clinicaltrials.gov. Máte-li jakékoli požadavky na změnu, odstranění nebo aktualizaci podrobností studie, kontaktujte prosím register@clinicaltrials.gov. Jakmile bude změna implementována na clinicaltrials.gov, bude automaticky aktualizována i na našem webu .
Klinické studie na Mozková mrtvice
-
Kahramanmaras Sutcu Imam UniversityNáborCerebral Palsy Gmfcs-er i-iiTurecko (Türkiye)
-
Lund UniversityNáborDěti s dětskou mozkovou obrnou, které jsou ambulantní | Cerebral Palsy Gmfcs-er i-iiŠvédsko
-
Auckland City HospitalThe University of Queensland; Auckland Medical Research Foundation; The Australian... a další spolupracovníciAktivní, ne náborMrtvice | Krevní tlak | Embolus CerebralAustrálie, Nový Zéland
-
University of New MexicoUniversity of California, San FranciscoUkončenoCerebrální kavernózní malformaceSpojené státy
-
Recursion Pharmaceuticals Inc.DokončenoCerebrální kavernózní malformaceSpojené státy
-
Beijing Tiantan HospitalZatím nenabírámeCavernózní malformace, cerebrálníČína
-
Fondazione IRCCS Ca' Granda, Ospedale Maggiore...Fondazione Policlinico Universitario Agostino Gemelli IRCCS; Mario Negri Institute... a další spolupracovníciNáborFamiliární cerebrální kavernózní malformace | CCMItálie
-
University of California, San FranciscoUniversity of Chicago; National Institute of Neurological Disorders and Stroke... a další spolupracovníciAktivní, ne náborMozkové kavernózní malformace | Cavernózní angiom, familiární | Mozkový kavernózní hemangiomSpojené státy
-
University of ChicagoMayo Clinic; National Institute of Neurological Disorders and Stroke (NINDS); University of California, San Francisco a další spolupracovníciAktivní, ne náborCerebrální kavernózní malformace | Cavernózní angiom | Hemoragická mikroangiopatieSpojené státy
-
University of ChicagoJohns Hopkins UniversityDokončenoCerebrální kavernózní malformaceSpojené státy