Perspectives on adapting a mobile application for pain self-management in neurofibromatosis type 1: results of online focus group discussions with individuals living with neurofibromatosis type 1 and pain management experts

Objective
Neurofibromatosis type 1 (NF1) is a genetic disorder in which chronic pain commonly occurs. The study sought to understand the needs of individuals with NF1 and pain management experts when adapting a pain self-management mobile health application (app) for individuals with NF1.

Design
We conducted a series of online, audio-recorded focus groups that were then thematically analysed.

Setting
Online focus groups with adults currently residing in the USA.

Participants
Two types of participants were included: individuals with NF1 (n=32 across six focus groups) and pain management experts (n=10 across three focus groups).

Results
Six themes across two levels were identified. The individual level included lifestyle, reasons for using the mobile app and concerns regarding its use. The app level included desired content, desired features and format considerations. Findings included recommendations to grant free access to the app and include a community support feature for individuals to relate and validate one another’s experience with pain from NF1. In addition, participants noted the importance of providing clear instructions on navigating the app, the use of an upbeat, hopeful tone and appropriate visuals.

Conclusions
Both participant groups endorsed the use of iCanCope (iCC) as an NF1 pain self-management mobile app. Differences between groups were noted, however. The NF1 group appeared interested in detailed and nuanced pain tracking capabilities; the expert group prioritised tracking information such as mood, nutrition and activity to identify potential associations with pain. In tailoring the existing iCC app for individuals with NF1, attention should be paid to creating a community support group feature and to tailoring content, features and format to potential users’ specific needs.

Leggi
Luglio 2022

Young adults cigarillo risk perceptions, attention to warning labels and perceptions of proposed pictorial warnings: a focus group study

Objective
Although cigars pose similar health risks to cigarettes, they are not uniformly required to carry a warning label on their packaging in the USA. The US Food and Drug Administration’s 2016 deeming rule established a cigar warning requirement, but it was challenged in federal court for failing to document warning effects on prevention/cessation, thus necessitating an evidentiary base for such requirements. We sought to explore young adult users’ understanding of cigarillo risks and addictiveness, as well as their perceptions of current (voluntary) and proposed cigar warning labels.

Design
In December 2020–January 2021, we conducted eight focus groups with young adult cigarillo smokers. We asked participants their first associations of cigarillos and beliefs about product harms/addictiveness, and then discussed existing warning labels and examples of potential pictorial warnings.

Setting
Focus groups were conducted remotely via the Adobe Connect platform, with participants from 20 US states.

Participants
Participants included 42 young adults (ages 18–29; 50% male), who were recent cigarillo users (ie, past 30 days) or less frequent users (ie, past 12 months).

Results
Participants frequently used cigarillos as blunts and often conveyed uncertainty about cigarillo risks and addictiveness, in general and relative to cigarettes. Participants typically paid little attention to current text warnings, but many expressed that pictorial warnings would more effectively promote knowledge of product risks and discourage use among prospective users.

Conclusions
US young adult cigarillo users may lack knowledge about product risks and addictiveness. Standardised warning requirements, particularly pictorial labels, may help address this knowledge gap and deter use.

Leggi
Giugno 2022

Acceptability of donor funding for clinical trials in the UK: a qualitative empirical ethics study using focus groups to elicit the views of research patient public involvement group members, research ethics committee chairs and clinical researchers

Objectives
The Plutocratic Proposal is a novel method of funding early phase clinical trials where a single donor funds the entire trial and in so doing secures a place on it. The aim of this study was to identify and explore concerns that may be raised by UK research ethics committees (RECs) when reviewing clinical trials funded in this way.

Design
Empirical ethics combining ethical analysis and qualitative data from three focus groups held online using Frith’s symbiotic approach. Data were analysed using inductive thematic approach informed by the study aims and ethical analysis.

Participants
22 participants were recruited: 8 research patient public involvement group members, 7 REC chairs and 7 clinical researchers. All were based in the UK.

Results
With one exception, participants thought the Plutocratic Proposal may be ‘all things considered’ acceptable, providing their concerns were met, primary of which was upholding scientific integrity. Other concerns discussed related to the acceptability of the donor securing a place on the trial including: whether this was an unfair distribution of benefits, disclosing the identity of the donor as the funder, protecting the donor from exploitation and funding a single study with multiple donors on the same terms. Some misgivings fell outside the usual REC purview: detrimental impact of donors of bad character, establishing the trustworthiness of the matching agency and its processes and optimising research funding and resources. Despite their concerns, participants recognised that because the donor funds the whole trial, others would also potentially benefit from participating.

Conclusions
We identified concerns about the Plutocratic Proposal. UK RECs may be open to approving studies if these can be addressed. Existing governance processes will do some of this work, but additional REC guidance, particularly in relation to donors securing a place on the trial, may be necessary to help RECs navigate ethical concerns consistently.

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Giugno 2022

Identifying threshold concepts in postgraduate general practice training: a focus group, qualitative study

Objective
To identify threshold concepts (TCs) for physicians undergoing postgraduate medical education (PGME) in general practice.

Design
An explorative, qualitative study with 65 min focus group interviews and thematic analysis was used. Participants were asked to describe their most transformative learning experiences. Heuristical TCs were identified from the thematic analysis.

Setting
Aotearoa/New Zealand (A/NZ).

Participants
Fifty participants, mostly comprising current trainees and educators from urban centres, and of NZ/European ethnicity.

Results
Twenty TCs covering many aspects of postgraduate general practice experience were derived from themes identified in the data. Presented in medical proverbial form for ease of recollection, these included: Money makes the practice go round; Be a legal eagle; Manage time or it will manage you; Guidelines, GPs’ little helpers; Right tool, right word, right place; The whole of the practice is greater than the sum of the parts; The personal enhances the professional; Beat biases by reflection; Chew the Complexity, Unpredictability, Diversity; Embrace the uncertainty; Not knowing is knowing; Seek and you shall find; Waiting and seeing, waiting and being; Look, listen, think between the lines; Treat the patient beyond the disease; No patient is an island; Words work wonders; Hearing is healing; Being you and being there; and; The relationship is worth a thousand consults. These TCs mapped onto core competencies in A/NZ’s PGME in general practice curriculum.

Conclusions
Participants readily identified transformative and troublesome moments in their PGME in general practice. These findings confirmed evidence for a wide range of TCs with many newly identified in this study. All TCs were fundamentally based on the doctor–patient relationship, although often involving the context and culture of general practice. Actively incorporating and teaching these identified TCs in PGME in general practice may enable trainees to grasp these important learning thresholds earlier and more easily and aid in identity and role formation.

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Giugno 2022