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Original research
How to co-design a health literacy-informed intervention based on a needs assessment study in chronic obstructive pulmonary disease
  1. Christine Råheim Borge1,2,
  2. Marie Hamilton Larsen3,
  3. Richard H Osborne4,
  4. Eivind Engebretsen1,
  5. Marit Helen Andersen1,5,
  6. Ingrid Asbjørnsen Holter2,
  7. Astrid K Wahl1
  1. 1Department of Interdisciplinary Health Sciences, University of Oslo Faculty of Medicine, Oslo, Norway
  2. 2Research Department, Lovisenberg Diakonale Hospital, Oslo, Norway
  3. 3Department of Master courses, Lovisenberg Diaconal University College, Oslo, Norway
  4. 4Faculty of Health, Arts and Design, Swinburne University of Technology, Melbourne, Victoria, Australia
  5. 5Division of Cancer Medicine, Surgery and Transplantation, Oslo Universitetssykehus, Oslo, Norway
  1. Correspondence to Ph.d. Christine Råheim Borge; c.r.borge{at}


Objective To develop a co-designed health literacy (HL)-informed intervention for people with chronic obstructive pulmonary disease (COPD) that enables them to find, understand, remember, use and communicate the health information needed to promote and maintain good health.

Design This study used a co-design approach informed by the programme logic of the Ophelia (Optimising Health Literacy and Access) process. The co-design included workshops where possible solutions for an HL-informed intervention were discussed based on an HL needs assessment study.

Settings Five workshops were performed in a local community setting in the specialist and municipality healthcare services in Oslo, Norway.

Participants People with COPD, multidisciplinary healthcare professionals (HCPs) from the municipality and specialist healthcare services, and researchers (n=19) participated in the workshops. The co-designed HL-informed intervention was based on seven focus groups with people with COPD (n=14) and HCPs (n=21), and a cross-sectional study of people with COPD using the Health Literacy Questionnaire (n=69).

Results The workshop co-design process identified 45 action points and 51 description points for possible intervention solutions to meet the HL needs of people with COPD. The final recommendation for an HL-informed intervention focused on tailored follow-up after hospitalisation, which uses motivational interviewing techniques, is based on the individual’s HL, self-management and quality of life needs and is implemented in cooperation with HCPs in both the specialist and municipality healthcare services.

Conclusion During the codesign process, the workshop group generated several ideas for how to help patients find, understand, remember, use and communicate health information in order to promote and maintain good health. People with COPD need tailored follow-up based on their individual HL needs by HCPs that have knowledge of COPD and are able to motivate them for self-management tasks and help them to improve their quality of life (QOL) and decrease hospitalisation.

  • Information management
  • Health & safety
  • Organisation of health services
  • Quality in health care
  • RESPIRATORY MEDICINE (see Thoracic Medicine)

Data availability statement

No data are available. Norwegian regional ethical guidelines do not give permission to share data from research if they are not anonymous.

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:

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Strengths and limitations of this study

  • A strength of this study is that it included people with chronic obstructive pulmonary disease (COPD), a diverse sample of multidisciplinary healthcare professionals (HCPs) from the specialist and municipality healthcare services and researchers.

  • Another strength is that the co-designed health literacy (HL)-informed intervention for people with COPD was based on a recently performed HL needs assessment study.

  • The co-design process allows stakeholders to feel more engaged, included and prepared to take the intervention forward with practical and financial solutions.

  • A study weakness is that our methods differed in several ways from the health standard Optimising Health Literacy and Access (Ophelia) process for developing literacy-informed interventions.

  • Another study weakness is that the idea-generating workshops included mixed groups of patients with COPD, HCPs and researchers; patients may have been more open to sharing their ideas in a separate group without HCPs and researchers.


People with chronic obstructive pulmonary disease (COPD) have a high burden of symptoms such as breathlessness, depression and anxiety, low quality of life (QOL), high comorbidity, exacerbation of distressing symptoms and hospitalisations that result in high healthcare costs.1 They often require complex follow-up with lifestyle interventions to assist with managing the disease.2 3 Despite much research, we still have not found the key to providing effective follow-up of people with COPD. Interventions, such as medications, pulmonary rehabilitation, smoking cessation programmes and self-management programmes, have shown beneficial effects on several outcomes in COPD such as reduced respiratory symptoms, hospitalisations and healthcare costs, as well as improved quality of life (QOL) and coping.4–8 However, many people with COPD do not fully benefit from such interventions, and low health literacy (HL) has been suggested as a possible explanation. Despite HL being identified as an important issue to address in COPD,3 4 9 there is currently a gap in the literature in this area, as few studies have focused on HL, either as an aim or as an outcome of COPD interventions.5–7

The concept of HL is defined as the cognitive and social skills that determine the motivation and ability of individuals to gain access to, understand, remember and use information in ways that promote and maintain good health.10 For people with COPD, low HL is associated with poor inhalation technique,11 12 living alone and having a minority background, lower education,13 multiple comorbidities,14 low lung-specific health-related QOL,15 limited self-management skills or more hospitalisations.13

In general, intervention development is based on current practice, prior research and theory16–18 and uses a top-down approach.19 Intervention development is also frequently undertaken in small unrepresentative samples, often executed by a highly trained and motivated therapist and with highly selected and compliant patients. However, in the real world, contexts and patients’ lived experience may be different from the research setting, resulting in weak and often ineffective interventions.20 Bottom-up approaches that include rich information about the diverse needs of patients and input from stakeholders on the viability of an intervention (ie, its suitability, practicability, affordability and helpfulness) ensure that the developed interventions are directly informed by end users and are more likely to be needed, wanted and implementable.19 20 However, few have used a ‘bottom-up approach’ in designing interventions for people with COPD, and the bottom-up approach may be a particularly effective solution to designing HL interventions.

A programme logic model can be useful in order to engage stakeholders in designing, planning and finding solutions on evaluation and outcomes of an HL intervention from their perspective. This is a framework or a descriptive/schematic representation of activities and outcomes showing a link between different steps of activities in a process.21 The Optimising Health Literacy and Access (Ophelia) process is an example of a programme logic model specifically focused on developing and testing HL interventions, informed by an HL needs assessment study. Ophelia has been applied in wide range of settings where teams focus on developing interventions to improve outcomes for people who experience disadvantage and vulnerability,22 23 including within the WHO’s National Health Literacy Demonstration Projects.24

Given the likelihood that unmet HL needs are contributing to poor health outcomes among people with COPD, the aim of this study was to co-design a HL-informed intervention that helps people with COPD to find, understand, remember, use, and communicate the health information needed to promote and maintain good health outcomes. This aim addresses the current gap in the literature on HL-informed interventions to improve outcomes for people with COPD, such as reducing symptom burden and hospitalisation rates and improving self-management and QOL.


The results presented in this paper are part of a larger study called ‘Health Literacy: a Key to Health in COPD’. The study was informed by the Ophelia process, which includes three phases:

  • In phase I, the HL needs of a representative cross-sectional sample of the target population are systematically assessed using the Health Literacy Questionnaire (HLQ)25 and qualitative interviews.26 Cluster analysis is then performed to identify groups of individuals with similar HL profiles on the HLQ, and vignettes are written based on the clusters and qualitative interviews.26

  • In phase II, the vignettes are presented to stakeholders in workshops for discussion and interpretation to generate innovative and implementable HL intervention ideas. Further to take the ideas that were generated and decided oninto the final intervention to implement.26

  • In phase III, the HL intervention is implemented and evaluated.22 23 26

    The present paper focuses on phase II. This is the phase where the co-design of an HL-informed intervention for patients with COPD is formed from the results of an HL needs assessment study. However, our co-design process was based on an evaluation of preresults, which consisted of simple associations from a cross-sectional survey of the HLQ (n=69) and qualitative analysis of seven focus group interviews of people with COPD (n=14) and multidisciplinary healthcare professionals (HCPs) (n=21), and not the cluster analysis and vignettes described in the Ophelia manual. See figure 1 for an overview of the study.

Figure 1

Overview of the study informed by the Optimising Health Literacy and Access (Ophelia) process. COPD, chronic obstructive pulmonary disease; CSS, cross-sectional study; FC, focus group; HCP, healthcare professional; HCS, healthcare service; HL, health literacy; RCT, randomised controlled trial; WM, workshop meeting.

A detailed description of the methods and results for the phase I cross-sectional study (total n=158) and qualitative focus group interviews (n=7) has been previously published.27 28


Based on the results from phase I, a phase II co-design process of five workshop discussions was formulated and performed at one medium-sized hospital in cooperation with four healthcare services located in municipalities in Oslo, Norway. A steering committee was established as part of the larger study. In the co-design phase, they reviewed the emerging results, decided on the study’s direction, and provided input on the practical and financial feasibility of implementing the recommended intervention. The committee was composed of leaders from the municipality healthcare service, the hospital and the University of Oslo. Two steering committee meetings were held, each lasting 1 hour and led by the main researcher (CRB).

Figure 2 shows a detailed flow diagram of the phase I data collection and the phase II co-design process with the content of what was presented and discussed at each workshop meeting.

Figure 2

Flowchart of phases I and II. CAT, COPD Assessment Test; COPD, chronic obstructive pulmonary disease; CSS, cross-sectional study; FC, focus group; GSES, Generalised Self-efficacy Scale; HCP, healthcare professional; HCS, healthcare service; HL, health literacy; HLQ, Health Literacy Questionnaire; SE, self-efficacy; SGM, steering group meeting; WHO-5, WB, well-being; WHO-5, Five-Item WHO Well-being Index; WM, workshop meeting.

We used Standards for Quality Improvement Reporting Excellence V.2.0 as the reporting guideline for this paper.29

Study population and inclusion criteria in the workshops

In each workshop, people with COPD and multidisciplinary HCPs of healthcare services (ie, hospital/specialist and municipality healthcare services) and researchers were included. A study nurse or the main researcher contacted leaders in the specialist and municipality healthcare services through email to assist in recruiting members for the workshop. They were asked to recruit a diverse group of multidisciplinary HCPs from both the municipality and the specialist healthcare service.

Inclusion criteria included

  • HCPs with experience working with COPD in the specialist or municipality healthcare service.

  • People with experience living with COPD at any stage of the disease.

  • Researchers with experience in COPD research.

Workshop processes, data collection and analyses

In phase II, five workshops, each lasting 2 hours, were conducted during a 3-month period. Attendance records were kept for each meeting. All meetings were held and administered at the main hospital in the specialist healthcare service. In the workshops, simple associations between HLQ scores and patient characteristics (ie, sociodemographic, clinical, COPD problems, well-being and self-efficacy) and the main themes and summary of the focus group interviews were presented, explained and discussed. The discussion of the results was guided toward identifying potential areas of HL needs, problems, goals, measures/actions, and realistic solutions and strategies for how to achieve the goals.26 Recent COPD-related research on HL, self-management support, pulmonary rehabilitation, medication and action plans was presented in the discussion.

The main researcher has clinical and research knowledge in COPD and facilitated the workshops together with a research nurse who also had clinical knowledge of COPD. At the start of the meeting, the workshop members were informed of the backgrounds of the researcher and study nurse. The content of the workshop discussions was analysed as described in the Ophelia manual.26 This consisted of taking workshop notes on paper and written on a whiteboard at the meetings. After the meeting, these notes were summarised and checked against an audio-recording. At the next meeting, the summarised notes were presented, and a final decision on the content was made before moving on to the next topic. Ideas for actions that could be an intervention or part of an intervention and a description on how to perform these actions were counted based on the discussions on different HL needs. All the data from all workshops were summarised to finalise the intervention at the end of the workshops (see figure 2, phase II, for more information).

Results of the HL needs assessment study presented in the workshop meetings

Results from the phase I HL needs assessment study that were presented to the participants are summarised in table 1. The information included results from the qualitative focus group interviews that had been analysed using content analysis to identify patterns and themes.30 The previously published27 main themes are presented with summaries of the interviews.

Table 1

Data from the HL need assessment study that were presented in the workshop meetings

The results from the cross-sectional study focused on the following variables: HL as measured using the HLQ,25 COPD problems/disease-related QOL using the COPD Assessment Test (CAT),31 well-being using the WHO-5 Well-Being Index,32 33 and self-efficacy using of the Generalised Self-Efficacy Scale.34 The results also included sociodemographic variables such as, age, gender, living status, education level, smoking status, internet/computer use and whether the participant wanted a home visit, as well as clinical variables, such as the number of comorbidities, years with COPD, use of medications, hospitalisations and other clinical information (eg, lung function and body mass index). We also gave a description of the content in each HLQ domain to the workshop members.25

In the workshop meetings, we presented the summarised analyses as frequencies, means and SD, and the p value of associations. However, in this paper, we have presented the R2 as a measure of explaining variance.35 36

Patient and public involvement

To design this study, people with COPD, the main hospital in Oslo and four municipality healthcare systems in Oslo, Norway, and national and international researchers participated in deciding on the aim, performance and outcomes of this whole study that were inspired by the Ophelia process. We had two patients with COPD involved in the need assessment study (ie, cross-sectional, focus groups) and two new patients with COPD in the co-design phase (ie, this paper). The need for starting the whole inspired Ophelia process was based on finding solutions on how to follow up people with COPD who have several hospitalisations and to help them improve their health.


In total, 19 multidisciplinary HCPs participated in the workshops (ie, 7 nurses, 3 physiotherapists, 2 clinical nutritionists, 1 occupational therapist, 1 pulmonary physician, 2 people who have COPD, 1 social worker and 1 pedagogue). Of the 19 participants, 16 were women and 3 were men. The overall attendance rate was 84% across all five meetings.

In total, nine members participated in the steering group meetings (ie, four leaders from each of the four municipality healthcare sites in the home care unit, four leaders from the specialist healthcare service (a clinic manager of a medical department, a senior charge nurse of a medical ward, a senior charge nurse of a medical outpatient unit and a director of field in the administration, and one leader/researcher from the university). Five were female and four were male.

Workshop recommendations based on the focus group interviews

Table 2 presents the workshop discussion results on the four themes and the HL needs, problems, goals, actions and possible solutions (ie, how) relevant to each theme. The four themes discussed were (1) strengthening the feeling of security, (2) supporting motivation for endurance and self-management, (3) combating the burden of insufficient knowledge of COPD and lack of informational flow, and (4) strengthening dignity.27

Table 2

Workshop recommendations based on HL needs from the qualitative focus group interviews

The discussions were about the general HL needs of both patients and HCPs who work with patients with COPD in relation to the themes. The discussions revealed 19 action points with 30 description points for relevant and feasible solutions on how to carry out the actions. The workshop generated new ideas for interventions that either had been and not previously been tried out in the local setting. Improvement work was also proposed for existing interventions. The workshop members were eager in the discussion and actively engaged in the opportunity to develop an HL-informed intervention in COPD.

For the theme ‘strengthening the feeling of security’, several problems, goals, actions and solutions were identified. Patients who have problems with anxiety often connected this symptom to breathlessness. In such cases, the goal should be to reduce anxiety, and suggested actions from the workshop meetings included assisting patients with a plan for coping and providing individually tailored plans. Patients also need tailored follow-up based on their individual needs and provided by small teams of HCPs. Suggested actions included a nurse who could act as a ‘bridge’ between the specialist and municipality healthcare services and with multidisciplinary HCPs in situations where an individual plan on goals and actions is created and followed up after hospital discharge. In order to help patients with loneliness, it was suggested to provide patients with a designated nurse who coordinates healthcare service options and whom the patients can call if needed.

For the theme ‘supporting motivation for endurance and self-management’, actions that may help patients to find their inner motivation were suggested. To do this, HCPs need to have competence in how to motivate, for instance, using motivational interviewing (MI) techniques.

For the theme ‘combating the burden of insufficient knowledge of COPD and lack of information flow’, patients with COPD could be referred to COPD courses/rehabilitation and welfare technology programmes to improve their competence in relation to their disease. HCPs could teach the patients how and where to find reliable information on the internet, and provide individual follow-up and information on COPD-related problems and medication use, for instance, through the use of the ‘teach-back method’.37 Moreover, in order to increase the quality of the follow-up of patients with COPD, a nurse with knowledge in COPD could conduct visits with patients in their home.

For the theme ‘strengthening dignity’, the actions of offering the same health resources as for other diseases and using good communications strategies such as shared decision making were suggested (see table 2 for more information).

Workshop recommendations based on the cross-sectional study

Table 3 summarises the workshop participants’ recommendations based on the nine HLQ domains and their associated factors. These results show that people with COPD have a wide range of potential HL challenges across sociodemographic, clinical, COPD problems, well-being and self-efficacy variables. The discussion resulted in 26 action points and 21 description points for relevant and feasible practical action solutions based on the presence of the different associations.

Table 3

Workshop recommendations for service improvements based on HL needs and associated clinical and sociodemographic variables from the cross-sectional study

For instance, the discussions from HLQ domain ‘feeling understood and supported by healthcare providers’ was about a need for an HCP that the patient can trust and who can give information/advice and follow-up with special focus on loneliness, nutrition problems, COPD as a disease and its symptoms and psychological symptoms. The goal should be to help such patients to get in contact with HCPs who can provide follow-up assistance with nutrition, psychological and COPD-related symptoms. This process may be supported by mapping individual HL problems, COPD-related problems and coping needs and by providing individual follow-up. For example, the Conversational Health Literacy Assessment Tool (CHAT)38 could be used to help clinicians understand patients’ HL, and the CAT3 31could be used to map COPD-related problems.

Further, for HLQ domain ‘having sufficient information to manage my health’, the workshop discussed that patients need more knowledge/information with special focus on those who smoke, have nutrition problems and have psychological symptoms. The goal should be to help such patients to increase their motivation to stop smoking by using different smoking cessation strategies (eg, medication and MI) and discuss how to reduce psychological symptoms and nutrition problems.

For the HLQ domain ‘navigation in the healthcare system’, the need was to help people with COPD to get information on where to find help and coordinate help in the healthcare system with focus on those who have low lung function, have lived with COPD for many years, have more COPD problems, have more psychological problems, need help to cope with the disease, have more hospitalisations, need nutrition follow-up and use their medication wrong. The goal should be to increase patients’ knowledge about where to find the right healthcare help. This could be provided, for instance, by giving information on who and where to contact by having easy-to-access and updated lists for different healthcare tasks in the municipality and specialist healthcare services. The use of medications should be mapped, and inhalation medications and technical equipment, such as oxygen therapy, nebulisers and respiratory support treatment, should be individually adjusted to each patient. HCPs should be more aware of giving information on who and where in the healthcare system patients may seek consultation to get help for their health problems. Lastly, after hospitalisation, COPD patient follow-up should be provided at home in order to reduce hospitalisations. Some of the ideas were given several times to the different HLQ domains and thus were not presented as separate ideas to each HLQ domain (see table 3 for more information).

Final co-designed HL-informed intervention for people with COPD

Based on the specific action points described in tables 2 and 3, the workshop members recommended a final version of the HL-informed intervention, which was proposed to steering group members.

The subsequent discussion in the steering group was about finding both practical and financial solutions to the intervention that was proposed. The steering group was positive about the intervention and expressed ownership of the project. As a result, all partners (the hospital and its four districts in the municipal health service) decided to share the operating costs of a nurse to follow up patients with COPD in the HL-informed intervention.

The follow-up should be home-based after discharge from the hospital to reach those with severe disease and those who normally have difficulties reaching the outpatient units and attending doctor appointments. Given the complexity of COPD, the patients’ needs vary greatly, and the intervention should therefore be tailored individually based on patients’ HL and health needs and self-management. This could be operationalised through nurses being trained in clinical, community and social issues of COPD. Further, to give nurses a tool for motivating patients, MI techniques should be learnt. Importantly, the nurses need increased confidence and competence through specialised education in COPD pathophysiology, medications, technical equipment, self-management tasks, and how to build and sustainably implement tailored action plans. The nurse should function as a coordinator between multidisciplinary HCPs in the municipality and the specialist healthcare services. A list of actions (see table 4) was made based on the possibilities in the local community for nurses in the follow-up of patients with COPD. The outcomes recommended to be used to evaluate the effectiveness of the intervention were hospitalisation, HL, self-management, experience of symptoms and QOL.

Table 4

Summary of actions selected for use in the intervention


Bringing together patients with COPD, HCPs and researchers working with COPD and discussing results from an HL needs assessment study made it possible to develop a HL-informed intervention that may improve services and meet the complex HL needs of people with COPD and improve their outcomes.

An HL-informed intervention focused on the follow-up of people with COPD after hospitalisation using MI techniques, tailored follow-up based on their individual HL, self-management and disease-specific QOL needs, and in cooperation with multidisciplinary HCPs in the specialist and municipality healthcare services was suggested. The co-designed intervention gave ownership to all partners and resulted in a joint responsibility for implementation and financial costs. Co-designing research has been suggested as a priority in clinical trials, but research priorities seem to be inconsistent.39 For instance, in a recent systematic review, patients suggested research priorities that focus on psychosocial consequences and disease education, while HCPs suggested research priorities that focus on their attitude, roles, education, communication and effectiveness. 40 By using data obtained from both qualitative focus groups with people with COPD and HCPs and a cross-sectional study of people with COPD, it was possible to identify the HL needs of both patients with COPD and the HCPs who work with them in a local setting. The workshop discussions made it possible to identify problems and goals and to provide suggestions for actions to reach these goals.

Although it requires more research, the Ophelia process has been found to successfully implement interventions.22 23 The Ophelia process informed us and gave us the opportunity to let all partners access ownership of the study. Solutions that were feasible and within an economical financial framework were suggested, which should make the intervention more implementable.

Tailored follow-up has previously been tested in COPD and shown to have beneficial effects on medication adherence.41 Pulmonary rehabilitation programmes and self-management programmes also aim to provide tailored follow-up for people with COPD42 43 and show effectiveness on respiratory symptoms, hospital readmission and healthcare costs, as well as coping and QOL.5–7 Moreover, tailoring interventions with home follow-up by nurses has been found to reduce disease-related symptoms in COPD.44 However, these interventions have not been tested to meet individual HL needs or evaluated on HL effectiveness. Thus, testing tailored follow-up care in relation to patients’ HL needs may have an additional benefit for people with COPD.

HCPs’ knowledge of MI is likely to be highly relevant to providing effective follow-up for patients with COPD. MI is a counselling method that involves enhancing a patient’s motivation to change. MI counsellors rely heavily on core communication skills, such as open-ended questions, reflective listening, affirmations, summarising and eliciting change talk.45 Thus, using MI may not only help patients with COPD to feel more secure and more motivated for endurance and self-management, but may also strengthen their feeling of dignity by being met and communicated with in a positive and supportive way. MI has been shown to be effective for a broad range of diseases and problems.46–48 In COPD, the method has been shown to positively impact patients’ perceptions of their disease-related problems and to reduce hospital readmission.49

Our study methods differed in several ways from the HL-informed intervention development system described as the Ophelia process.22 24 26 First, we did not perform a cluster analysis on the HLQ in order to identify strengths, limitations and preferences of our target population.22 24 26 The cluster analysis would have provided more information about unique groups than our analysis of the means and associations of the nine domains of the HLQ. However, at the time we started the codesign phase, we considered the sample of 69 too small to perform the cluster analysis. Second, we did not generate vignettes based on the HLQ cluster analysis and qualitative interviews. In the Ophelia process, the vignettes help workshop members to recognise and relate to the narrative to generate solutions.26 This method has previously been used as a unique method to assess HL in a population50 and has helped stimulate ideas for solutions in several workshops.22 23 50 However, in the co-design phase of our study, we presented the themes and summaries from the qualitative focus group interviews that we had performed in the needs assessment study of phase I. These summaries may have functioned in the same way as the vignettes.

Our method of using summaries from the focus group interviews and presenting the means and associations of the nine HLQ domains from the cross-sectional study in the workshops may be the reason why the co-design ended in a tailored intervention and was not focused on a specific group of patients such as immigrants or people affected by social inequities. Such groups have in previous literature been shown to have HL challenges.51

In our workshops, we presented associations between the nine HLQ domains and a broad selection of other patient variables. The explained variance in these analyses ranged from 4% to 34%, with most being less than 10%. Our aim in the co-design phase was not to perform hypothesis testing but rather to inform the workshop members of potential HL needs, engage them and find solutions to developing and implementing an HL-informed intervention for people with COPD in a local setting that in the end may help the patients with their disease and improve their coping and QOL. The effect of an HL intervention like this must be tested in future studies.


The workshop groups generated several ideas on how to help people with COPD with their individual HL needs in order to promote and maintain good health outcomes such as reduced symptoms and hospitalisations and improved self-management and QOL. People with COPD need tailored follow-up based on their individual HL needs by HCPs that have knowledge of COPD and are able to motivate them on self-management tasks and help them to improve their QOL, and decrease hospitalisation. Further research is needed to evaluate the recommended HL intervention of a tailored follow-up and MI techniques based on individual HL, self-management and disease-specific QOL needs after hospitalisation and in cooperation between multidisciplinary HCPs in the specialist and municipality healthcare services.

Data availability statement

No data are available. Norwegian regional ethical guidelines do not give permission to share data from research if they are not anonymous.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants and was approved by the ethical committee of South East, Oslo Norway (2016/12981/REK sør-øst). Participants gave informed consent to participate in the study before taking part.


The authors thank the people with chronic obstructive pulmonary disease, the healthcare professionals and leaders from the specialist and municipality healthcare service, as well as the researchers who gave their time to take part of this study. Special thanks also to Caryl Gay for her English language editing.



  • Twitter @richardosborne4, @eivinden

  • Contributors CRB was a guarantor and responsible for the performance of the entire study including being the leader of the workshops and steering group, conducting the analyses and drafting this paper. AW was coresponsible with a contribution to all parts. MHL and IAH participated in all the workshop meetings. All authors (ie, CRB, MHL, RO, MHA, EE, IAH and AW) were part of the analyses and writing the final version of this paper. All authors agreed on the revised document.

  • Funding This study has been supported by The Foundation Dam Feedback Study to the project 'A key to health in COPD' (link: Nøkkelen til helse for personer med KOLS-Stiftelsen Dam, project number 2017/FO147263. RHO was funded in part through a National Health and Medical Research Council of Australia Principal Research Fellowship (APP1155125).

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, conduct, reporting or dissemination plans of this research. Refer to the Methods section for further details.

  • Provenance and peer review Not commissioned; externally peer reviewed.