Improving uptake and completion of pulmonary rehabilitation in COPD with lay health workers: feasibility of a clinical trial

Abstract

Purpose

This study was designed to evaluate the feasibility of a cluster randomized controlled trial to test the efficacy of lay health workers (LHWs) in improving the uptake and completion of pulmonary rehabilitation (PR) in the treatment of COPD.

Materials and methods

LHWs, trained in confidentiality, role boundaries, and behavior change techniques, supported patients newly referred for PR. Interactions between LHWs and participants were recorded with smartphones. Outcomes were recruitment and retention rates of LHWs, questionnaire and interview-evaluated acceptability and analysis of intervention fidelity.

Results

Forty (36%) of 110 PR-experienced COPD patients applied to become LHWs. Twenty (18%) were selected for training. Twelve (11%) supported patients. Sixty-six COPD patients referred for PR received the intervention (5.5 participants per LHW). Ten LHWs were retained to the end of the study. Seventy-three percent of supported patients were satisfied or very satisfied with the intervention. LHWs delivered the intervention with appropriate style and variable fidelity. LHWs would welcome more intensive training. Based on this proof of concept, a cluster randomized controlled trial of an LHW intervention to improve uptake and completion of PR is feasible.

Conclusion

PR-experienced COPD patients can be recruited, trained, and retained as LHWs to support participation in PR, and can deliver the intervention. Participant COPD patients found the intervention acceptable. A cluster randomized controlled clinical trial is feasible.

Keywords:

• uptake
• completion
• recruitment
• retention
• intervention fidelity

Supplementary materials

Role description for lay health worker

Responsible Organization: King’s College London, Division of Health and Social Care Research.

Role Title: Lay health worker in pulmonary rehabilitation.

Responsible to: Dr Patrick White, Clinical Senior Lecturer in General Practice and Primary Care.

Purpose/Summary of the role: To assist COPD patients newly referred to Pulmonary Rehabilitation in attending the course.

Description of tasks

1. To agree to support up to eight patients referred to pulmonary rehabilitation over a period of up to 12 months.

2. To attend three training sessions in the role of lay health worker.

3. To support the patient using the understanding and skills acquired at the training sessions.

4. To speak with, meet and, if desired, accompany the patient to pulmonary rehabilitation.

5. To make a digital recording, using equipment provided by the research team, of conversations with patients to help with evaluation of this project.

6. To attend meetings with other lay health workers arranged by a professional mentor. The purpose of the mentor meetings is to review the role of lay health worker. Lay health workers will be able to share experiences, to learn from each other, and to solve problems that arise.

7. To treat all personal information given by patients in complete confidence.

8. To inform the research team of any concern or worry about the lay health worker’s own welfare that arises in the course of the volunteering role.

9. To inform the research team of any concern or worry about the welfare of any patients that arises in the course of the volunteering role.

10. To provide an interview to the research team to evaluate the role of being a lay health worker.

Time commitment:

1. To agree to act as a volunteer for up to 1 year.

2. To attend three training sessions in East Dulwich.

3. To provide support for up to 8 patients, 2 months at a time (with some overlap) over a year.

4. To speak on the telephone with each patient no more than eight times. Each telephone conversation to take no more than 30 minutes.

5. To meet with each patient at least once and no more than four times. Each meeting to last no more than 3 hours.

6. To attend at least four mentoring meetings (1½ hours max each) in the course of the year.

Skills and qualifications:

1. Previous experience of at least one complete course of Pulmonary Rehabilitation for COPD.

2. Ability to speak, read, and write in English.

3. Ability to use a telephone.

4. Ability to travel independently in south London.

IMPORTANT NOTE: All volunteer lay health workers must undergo a Disclosure and Barring Service check, previously known as a Criminal Record Bureau check. We will provide more information on this at interview.

Training and support:

Training will be provided by the Royal Society of Public Health at Dulwich Community Hospital on 3 days (1 day a week for 3 weeks). Each session will be from 10.30 am to 3.30 pm. We will provide a mentor for lay health workers who will meet with them in a group and support them in their work with patients.

Reimbursement of expenses:

Travel and subsistence, will be reimbursed, each at a set rate to be agreed.

Payment for research work:

The volunteer will be paid for activities related to the research evaluation. These will include a payment of up to £60 per patient supported for the recording of conversations with patients and a one off payment of £50 for providing a research interview. Lay health workers who support eight patients will be paid £480 for their research contribution in recording interviews.

Benefits to volunteer:

Volunteering as a lay health worker is an opportunity to support other COPD patients to benefit from the pulmonary rehabilitation service. We hope the volunteer will find this role enjoyable and fulfilling. We think it will prove extremely valuable to patients. This is the first time support through lay health workers has been attempted in this setting.

Volunteer agreement

Important Note: This agreement is not intended to be a legally binding contract of employment.

Volunteers are an important and valued part of clinical research carried out at King’s College London. We hope that you enjoy volunteering with us and feel a full part of our team. This agreement tells you what you can expect from us and what we hope from you. We aim to be flexible, so please let us know if you would like to make any suggestions and we will do our best to accommodate them.

We, the Department of Primary Care and Public Health Sciences, King’s College London, will

• Introduce you to how the research works and your role in it and provide any training you need.

• Provide regular contact with the lay health workers research team so you can tell us if you are happy with how your involvement is organized and get feedback from us.

• Respect your skills, dignity, and individual wishes and do our best to meet them.

• Keep you up to date with the progress of the research and inform you of possible changes directly affecting you.

• Provide a safe workplace.

• Apply our Diversity policy.

• Address concerns and issues you may raise to reach solutions via our problem-solving processes.

I agree to

• Have an ongoing obligation to inform the Department of Primary Care and Public Health Sciences, King’s College London, of any criminal charges, convictions, or cautions which occur during the course of my volunteering, whether or not they are related to the volunteer work. I understand failure to do so may result in disciplinary action or dismissal from the research team.

• Attend reliably at the time and place agreed and to give as much notice as possible whenever I cannot perform my role as expected.

• Follow King’s College London’s rules and procedures, including infection control, health and safety, diversity, and confidentiality.

• Raise any concerns about my experience as a volunteer at an early stage, giving the research team staff the opportunity to resolve any issues.

• Behave with courtesy to all colleagues, patients, and staff that I encounter in the course of my volunteering duties.

Name:

I accept the Agreement offered. In particular, I note my responsibilities in respect of Infection Control detailed in the Occupational Health form and confidentiality.

Signed: Date:

Topic Guide for Lay Health Workers: end of study interview

The purpose of the session is for us to hear about the experience of the lay health workers in supporting patients newly referred for pulmonary rehabilitation.

It is important that you feel able to say negative things about the project and positive because both types of comments could benefit people with COPD in the future. There are no right or wrong answers, we recognize that involvement in this project is different for everyone – we just want to hear about how your experience went and your thoughts about it.

Emphasize that everything said is confidential and will only be used for research purposes

1. What attracted them about volunteering as a lay health worker?

   What were their expectations?

   Probe – things that they thought might be good about getting involved?

   Things that they were worried about being involved?

2. How did they find the process of volunteering – information provided, interview?

3. How did they find the 3-day training as preparation for the role – what strengths, what gaps?

   Probe – did they feel different by the end compared to at the start of the training?

4. How did they find the arrangements for the introduction of the lay health workers to patients?

5. How did they feel the patient support went? Anything that they can give as examples of things they felt went particularly well, or things that they felt could have gone better?

   • Follow-up – How was the first call, how were they feeling?

   • How was the time involvement?

   • How did they find the recording of calls and conversations?

   • Did they have to adjust their approach for different patients they supported?

6. Once they were supporting patients, what do they think were the key issues that influenced patients’ participation in pulmonary rehabilitation?

7. How did they find the monthly mentoring meetings?

8. What do they think about the reimbursement of expenses and the payment for research participation?

9. What additional arrangements would have made the process better? Or, if we were going to do this project again, what advice would you give us?

Overview of the idea of lay health worker’s involvement in the recruitment and retention of patients to pulmonary rehabilitation.

This questionnaire is for patients who have been supported by a lay health worker as part of the Drill project

IMPORTANT NOTE: The information you provide in this questionnaire is for the research team. Any information you provide about your lay health worker and your comments will be treated as confidential.

Name:

Your satisfaction with the lay health worker:

Table

Do you have any other comments about your lay health worker?

General comments about the Drill Project

We will be interested to read your comments or suggestions about this new approach to supporting COPD patients to attend pulmonary rehabilitation.

Please tell us what you think are the strengths of the Drill project.

Please tell us where you think the Drill project could be improved.

Thank you for completing this questionnaire and for your participation in the Drill Project.

Acknowledgments

The authors would like to thank all the volunteers who expressed interest in the role of LHW and in particular those who participated in the training and qualitative interviews. The authors would also like to acknowledge the contribution of our COPD patient advisory group throughout the study from the design stage to the writing up of the findings. We also acknowledge the contribution of the Royal Society of Public Health from whom the LHW training was commissioned, and Diana Moss of Moss Health Skills Limited who ran the training. Further, we acknowledge the contribution of Viki McMillan who undertook the analysis of intervention delivery fidelity, with AJW, as part of her Master’s dissertation in Public Health. This paper presents independent research funded by the NIHR under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0214-30052). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. SL receives additional funding from the South African Medical Research Council. SJCT was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames at Bart’s Health NHS Trust.

Author contributions

PW conceptualized the study and wrote the first draft of this paper. SL advised on the recruiting, selection, and training of LHWs. LHW recruitment and selection was completed by PW and GG. GG was responsible for consenting and allocating patients for LHW support and collected and analyzed the qualitative and quantitative data. AJW led the mapping of the barriers and facilitators of participation in PR using the Theoretical Domains Framework. All authors contributed to data analysis, drafting and revising the article, gave final approval of the version to be published, and agree to be accountable for all aspects of the work.

Disclosure

The authors report no conflicts of interest in this work.