Resource Provider Description User Co-production Recognised healthcare service provider, academic organisation or charity? Information in video format?
www.bronchiectasis.me Produced by a multidisciplinary bronchiectasis team and patients and carers based at Newcastle University and Newcastle upon Tyne Hospitals NHS Foundation Trust
Content and format based upon findings of qualitative research with patients and carers. Comprehensive information in text (13,000 words. Sub-sectioned so small, relevant portions of information visible at a time) plus images and multiple videos. Option to download PDF. Updated and available open access June 2017
Yes. Co-produced with patients and carers and based upon prior research
Yes Yes
http:// www.bronchiectasis.scot.nhs.uk/ NHS Lothian and input from patients with bronchiectasis
Online information with input from patients (Approximately 3000 words plus written patient stories). Option to download PDF brochure. Last updated Jan 2015.
Yes. User input during development Yes No
https://www.blf.org.uk/supportfor- you/bronchiectasis
British Lung Foundation (BLF) Online and booklet version available. Previously quite brief information about bronchiectasis (900 words). Revised June 2017 to include more comprehensive information in keeping with the resources used in the BRIEF study [108].
User reviewers Yes No
http://www.nhs.uk/Conditions/ Bronchiectasis/Pages/Diagnosis.aspx
U.K. National Health Service Online information (3600 words). Lots of text on the page to scroll through plus extra items alongside. Last updated 2015
Not specified Yes No
http://patient.info/health/ bronchiectasis- leaflet
Patient (patient and professional information provider)
Online text. Multiple adverts alongside. Includes discussion forum. Last Updated 2014
Not specified No No http:// www.bronchiectasishelp.org.uk/ Written by a patient with bronchiectasis Patient’s perspective with input from
professionals. Not text-heavy. No Adverts.
Yes No No
https://www.nhlbi.nih.gov/ health/health- topics/topics/brn
National Heart Lung and Blood Institute (USA) Well organised sections. High volume of information and text (4500 words). No Adverts. Last updated 2014
Not specified Yes No
http://www.bronchiectasis.info/ Run by patients with bronchiectasis Discussion forum and online community rather than an information resource.
Yes No No
https://en.wikipedia.org/wiki/ Bronchiectasis Wikipedia Text and images. Last edited April 2017 Not specified No No https://medlineplus.gov/ency/
article/000144.htm
US National Library of Medicine Concise information (570 words). Last updated April 2017.
Not specified Yes No British Medical Journal Concise information (1200 words) no adverts.
All text format, no pictorial content. Last updated October 2015.
Not specified Yes No
BLF online presentation and question and answers with consultant and physiotherapist.
YouTube video of presentation slides and audio. Patient questions and answers. Published 2012.
Not specified Yes Yes
http://www.webmd.boots.com/ a-to-z- guides/bronchiectasis
Boots, Pharmacy/ WebMD. Last reviewed July 2015.
Online text information (1300 words). Lots of adverts on the page. Last updated July 2015.
Page 55 of 288
Discussion
There are no validated interventions to support people with bronchiectasis in their self-management. The multiple needs and complexities that people face in managing bronchiectasis and often multiple chronic co-morbidities require structure and support. A shift from the paternalistic medical models require enhanced collaborative and motivational skills on the part of health professionals to meet the needs of patients with lifelong chronic diseases. Pressures exerted by increasing population, restrictive health funding and increasing health expectations combine to demand clearer shared communication and effective information and support interventions. There is a clear gap in the literature with regard to validated systems of self-management information, education and support to permit people with bronchiectasis to achieve the best care for themselves.
The goal of self-management being to cultivate the skills, knowledge and confidence to make decisions, take action and adopt behaviours designed to maintain or improve quality of life. For true collaboration patient and health professionals need to share knowledge and progress along clearly mapped pathways to promote health.
Although the paternalistic term ‘compliance’ has been replaced in published research by the term adherence (indicating mutual interaction and collaboration between health providers and service users) it is difficult to evaluate whether the mind-set change required has taken place. Do health providers actually have the resources and processes in place to collaborate successfully?
Similarly, have people with bronchiectasis moved beyond deferring to expert opinion at each step, do they await health professional confirmation rather than build their knowledge, experience and autonomy by taking control? This mind-set change is key to encouraging self-management.
Patient experiences and opinions provide perspectives relating to decision making dilemmas, diverse physical, personal and social impacts experienced due to bronchiectasis. These qualitative experiences inform beyond the physical symptoms presented in bronchiectasis shedding light on the burden of multiple and varied associated emotional, social, cognitive and economic impacts (118).
Page 56 of 288 This insight into altered perception of self, self-perceived ability to self-manage and influence on self-management behaviours, roles within life and confidence are of import in devising support interventions.
The success of pulmonary rehabilitation in chronic respiratory disease and the exciting short-term improvements in self-efficacy reported by Lavery et al. (272) with respect to their expert patient programme (though it was not powered and therefore generalisable) provide a glimpse of aspects of multi-disciplinary care that encourage learning and provide coping skills. The integration of these aspects has the potential to provide a smoother route of support from which people with chronic conditions can self-manage within the framework of a self-management programme.
The WHO has provided the ICD-10 framework promoting standardised and meaningful health data interrogation and comparison. Analysis and interpretation of these ICD-10 codes provides a platform from which global initiatives are comparable and data that can be used to inform NHS strategy. Close ethical monitoring and governance must be carefully implemented to provide the protection necessary to safeguard patient interests while utilising enhanced information availability.
Conclusion
Guidelines for bronchiectasis advocate self-management. The published literature evaluated lacked a clinically tested guide to self-management for people with bronchiectasis. This paucity contrasts with the prominence of the self-management concept in the management of chronic disease globally and plethora of guidance for other chronic diseases.
This thesis explores the barriers and opportunities for self-management in bronchiectasis.
Page 57 of 288