The development of a digital intervention to provide feedback on objective nebuliser adherence data for adults with Cystic Fibrosis (CFHealthHub)

Transcription

1 The development of a digital intervention to provide feedback on objective nebuliser adherence data for adults with Cystic Fibrosis (CFHealthHub) Madelynne A. Arden Sheffield Hallam University Sarah J. Drabble, Alicia O'Cathain & Daniel Hind University of Sheffield Pauline Whelan University of Manchester Marlene Hutchings & Martin Wildman Sheffield Teaching Hospitals

2 Cystic Fibrosis (CF) By National Heart Lung and Blood Institute (NIH) - National Heart Lung and Blood Institute (NIH), Public Domain,

3 Lung health and adherence Acute or chronic lung infections are common in adults with CF Nebuliser treatments are prescribed and can have a preventative effect antibiotics mucolytics BUT adherence is poor Review using medicine possession ratio (Eakin et al., 2011) % for inhaled antibiotics 53-79% for inhaled mucolytics Wide discrepancy depending of measurement (Daniels et al., 2015). self-reported (80%) objective (36%)

4 The intervention Adherence feedback charts CFHH Personalised 'toolkit' Browsable content

5 Method: Stage 1 5 participants 3 female and 2 male aged years Beta version of the CFHH website Followed up after one week to troubleshoot any data upload issues. Semi-structured interview after one month to obtain feedback on acceptability of the CFHH website.

6 Method: Stage 2 22 participants 14 females and 8 males aged years Rapid cycle development (5 cycles) of the CFHH website 4 sessions with a physiotherapist over six months and independent access to CFHH. Semi-structured telephone interviews with patients (n=18). Semi-structured think-aloud protocol with subset of participants (n = 6) face-to-face, one hour, screencast using Camtasia Studio 8 Interview and navigation tasks while thinking aloud

7 Analysis Interviewers made notes and circulated to members of the development team. Interviewers re-watched screencast of CFHH use during think-aloud and used this to write notes. Interview notes were discussed and clips of videos watched during team meetings. Consensus on the identification of key issues. Whether/how to address. prioritising

8 Technical issues Issues with data transfer issues with nebuliser issues with Qualcomm hub human error Checking systems developed Slow website speed technical solutions

9 Look of the site Home page and data displays too clinical and NHS looking.

10 Feedback charts Wanted it to be immediately easy to see adherence in charts. Suggested traffic-light system. Wanted to see data over a longer time frame. Treatments appearing in the wrong day.

11 Content Easy to understand. Useful information about treatment. information about new treatments would be good Helped with getting a routine for treatment. Wanted more pictures and quotes/stories. Some liked content from others with CF, others wanted content from health professionals. both provided

12 Personalising No consensus on homepage picture Choose from a selection Can upload own image (a personal outcome goal?)

13 Navigation Too many drop-down menus/liked drop down menus Didn't know what was there Couldn't find some information Wanted search function

14 Social support Wanted 'inspiring' quotes from people with CF identified from initial qualitative work, consent sought and added to CFHH Some wanted forum/blog to interact with other people with CF but others did not want this Data protection issues Moderator/administrator required Concern in team that this could normalise non-adherence conducted video interviews and we identified clips to include on CFHH. Video library strategies to increase/maintain adherence role models to build confidence

15 Usage Limited independent usage and engagement with CFHH mostly used graphs and toolkit thought some content would be useful for 'others' Lack of app an issue Push notifications weekly % adherence or reminder to access tools and support Reward messages

16 Interventionist Positive about contact with physiotherapist delivering intervention. Could not always remember what they had done/how to find content. developed participant guide to CFHH developed detailed manual and training package for interventionists procedure to assess fidelity in delivery

17 Conclusion We have developed CFHH in response to feedback and suggestions from people with CF. Intervention is usable and acceptable. Pilot/feasibility study is underway.

18 This presentation summarises independent research funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (Grant Reference Number RP-PG ). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.

19 Questions?