Effective ways to support healthcare professionals approaching vulnerable populations about research are needed to ensure young people are empowered to make informed choices about research participation.
BackgroundPatient and public involvement (PPI) is central to research and service planning. Identifying effective, meaningful ways of involvement is challenging. The cohort study ‘Do specialist services for teenagers and young adults with cancer add value?’ follows young people for three years, examining outcomes associated with specialist care. Participant retention in longitudinal research can be problematic potentially jeopardising study completion. Maximising study awareness through high impact branding and publicity may improve study retention. Study names are typically generated by researchers rather than designed with patients.We aimed to involve young people in developing a brand identity and name to ‘Do specialist services for teenagers and young adults with cancer add value?’.MethodsNine young people aged 17–26 years diagnosed with cancer when aged 14–25 years participated in a one day workshop with further data collection at a patient conference. Methodology was similar to conventional branding and naming exercises and was divided into six stages. The workshop comprised five stages. Stage 1: ‘What’s in a brand’ allowed young people to enquire why brands/logos are important, Stage 2: ‘Brand Transformation’ identified what young people needed to know and believe about the study when approached about participation, Stage 3: ‘Brand Essence’ determined how we wanted the study to be perceived by young people, Stage 4: ‘What’s in a name’ identified potential names for the study. Stage 5: ‘Logo creation’ assembled the mood and feel of logos. Stage 6 was logo design and an electronic survey of 249 young people attending a patient conference.ResultsBRIGHTLIGHT was the final study name and the brand essence (or study personality) was friendly, supportive and inspiring. Four logos were designed and the final logo received 47% (n = 115) of votes.ConclusionsAcceptance and retention to BRIGHTLIGHT is higher than anticipated (80% versus 60%), this may be related to our integral PPI strategy. We propose this reproducible methodology as an important, enjoyable, and novel way of involving patients in research and a welcome alternative to researcher-developed acronyms. Ideally this should be carried out prior to engaging with healthcare professionals to prevent confusion around study identity.
BackgroundPatient experience is increasingly used as an indicator of high quality care in addition to more traditional clinical end–points. Surveys are generally accepted as appropriate methodology to capture patient experience. No validated patient experience surveys exist specifically for adolescents and young adults (AYA) aged 13–24 years at diagnosis with cancer. This paper describes early work undertaken to develop and validate a descriptive patient experience survey for AYA with cancer that encompasses both their cancer experience and age-related issues. We aimed to develop, with young people, an experience survey meaningful and relevant to AYA to be used in a longitudinal cohort study (BRIGHTLIGHT), ensuring high levels of acceptability to maximise study retention.MethodsA three-stage approach was employed: Stage 1 involved developing a conceptual framework, conducting literature/Internet searches and establishing content validity of the survey; Stage 2 confirmed the acceptability of methods of administration and consisted of four focus groups involving 11 young people (14–25 years), three parents and two siblings; and Stage 3 established survey comprehension through telephone-administered cognitive interviews with a convenience sample of 23 young people aged 14–24 years.ResultStage 1: Two-hundred and thirty eight questions were developed from qualitative reports of young people’s cancer and treatment-related experience. Stage 2: The focus groups identified three core themes: (i) issues directly affecting young people, e.g. impact of treatment-related fatigue on ability to complete survey; (ii) issues relevant to the actual survey, e.g. ability to answer questions anonymously; (iii) administration issues, e.g. confusing format in some supporting documents. Stage 3: Cognitive interviews indicated high levels of comprehension requiring minor survey amendments.ConclusionCollaborating with young people with cancer has enabled a survey of to be developed that is both meaningful to young people but also examines patient experience and outcomes associated with specialist cancer care. Engagement of young people throughout the survey development has ensured the content appropriately reflects their experience and is easily understood. The BRIGHTLIGHT survey was developed for a specific research project but has the potential to be used as a TYA cancer survey to assess patient experience and the care they receive.
Aims and Objectives: Atorvastatin calcium (ATR) is a BCS class II drug showing poor bioavailability due to limited aqueous solubility. In the present study, a self-nano-emulsifying drug delivery system (SNEDDS) was developed and formulated as a liquid filled in a hard shell capsule to improve the bioavailability of ATR. Methods: Different oils were screened through the saturated stability method, and the amount of ATR solubilized in the respective oils was analysed through HPLC at 245nm. A ternary phase diagram was plotted to obtain the optimized ratio of oil, surfactant, and co-surfactant to formulate SNEDDS. The prepared ATR SNEDDS was filled into hard shell capsules, band sealed, and subjected to various evaluations like disintegration time, self-emulsification time, precipitation time assessment, globule size analysis and zeta potential. Then the in vitro dissolution studies were carried out. The optimized SNEDDS formulation was filled in a hard shell capsule, and in vivo studies were performed on rabbits to compare the pharmacokinetic parameters with the marketed formulation and pure ATR. objective: In the present study a Self-nano-emulsifying drug delivery systems (SNEDDS) was developed and formulated as a Liquid filled in hard shell capsule to improve the bioavailability of ATR. Results: Capmul MCM as the oil component showed five-fold solubility of ATR and was selected for the preparation of ATR-SNEDDS. The SNEDDS formulation showed an entrapment efficiency of 89.76±4.1% ATR with a globule size of 385±1.9 nm and an emulsification time of 5 seconds. It was established from the study that liquid ATR-SNEDDS had relative bioavailability enhanced by 1.7 times in comparison to the marketed formulations (Lipvas) and 4.8 times with respect to pure ATR. Conclusion: From the study, it was concluded that the bioavailability of ATR was enhanced by formulating ATR as Liquid SNEDDS filled in hard shell capsules.
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