“Good health” and care needs in idiopathic pulmonary fibrosis/progressive pulmonary fibrosis: the COCOS-IPF patient-led European focus groups

Abstract

Background

Idiopathic pulmonary fibrosis (IPF) and other progressive forms of pulmonary fibrosis (PPF) place a heavy burden on patients’ lives. While research on clinical aspects of IPF and PPF progresses, evidence on patients’ subjective experiences is still emerging. This qualitative study investigated how patients with IPF/PPF and caregivers define “good health”, key health outcomes of the care they receive and unmet care needs. This work is part of the COCOS-IPF project, which aims to develop a Core Outcome Set for IPF and PPF.

Methods

Together with the European Lung Foundation and the European Pulmonary Fibrosis Federation, focus groups were conducted by trained patient representatives, supported by allied health professionals, across five European countries. Discussions followed a semi-structured topic guide. An inductive thematic analysis was performed, following Braun and Clarke's framework for extraction of qualitative data, with findings refined through consensus meetings.

Results

Our analyses revealed 10 major themes reflecting participants’ perspectives on health, reflecting four broader areas: social connectedness, adaptive strategies and activity, physical and emotional wellbeing, and overarching perceptions of quality of life and normality. One additional major theme summarises participants’ unfulfilled care needs, including access to clear information, holistic and person-centred care, and attention to psychological and social needs.

Conclusion

Patients and caregivers define good health in a multidimensional way, linking physical, emotional and social aspects. Including these perspectives in developing the IPF/PPF Core Outcome Set could better align care with patients’ real-life needs and priorities.

Shareable abstract

European focus groups explored how patients with IPF/PPF and their caregivers define “good health”. The results show that health – from a patient perspective – links physical, emotional and social aspects, and that unfulfilled care needs remain. https://bit.ly/3KRBJwH

Introduction

Idiopathic pulmonary fibrosis (IPF) and progressive pulmonary fibrosis (PPF) are rare interstitial lung diseases marked by progressive lung scarring [1, 2], resulting in symptoms including breathlessness, cough and fatigue, which severely impact patients’ quality of life and emotional well-being [3–5]. Although antifibrotic treatment can slow disease progression, IPF/PPF remain irreversible and are associated with poor prognosis [6–8].

Given the progressive nature and significant symptom burden, early access to specialised, integrated care is crucial [9, 10]. While multidisciplinary approaches are being increasingly implemented [11–13], studies continue to highlight unmet patient needs – such as better access to information and expert centres, psychosocial support and end-of-life care [14–17]. Patient advocacy groups have echoed these findings, calling for integrated models of care that address patients’ needs throughout the care continuum [9].

To improve care for all people living with IPF/PPF, regardless of country or care setting, it is crucial to identify patient-prioritised outcomes [12]. Unfortunately, until today, there is little agreement on which outcomes best reflect the lived experience of patients with IPF/PPF. Led by both patient representatives of the European Pulmonary Fibrosis Federation (EU-PFF), the European Lung Foundation (ELF) and European health professionals, this focus group study aimed at performing an inductive analysis exploring how people with IPF/PPF define “good health” and experience unmet care needs.

Methods

Study context and coordination

This study is part of the COCOS-IPF project (www.cocos-ipf.com), an international, multidisciplinary initiative aimed at identifying a Core Outcome Set and corresponding measures for IPF/PPF based on the COMET methodology [18]. The project adopts a multi-stakeholder and international perspective and involves patients and their representatives as co-investigators throughout the process [19, 20].

Focus group procedure

Focus groups were led by a patient moderator and held in five European countries (one session each): Belgium (BE), Greece (GR), Norway (NO), Turkey (TR) and United Kingdom (UK), selected for geographical diversity and the presence of an active local patient advocacy organisation. The patient moderators were affiliated with a national patient advocacy organisation and were recruited by ELF and EU-PFF through their networks. Moderators were fluent in both the local language and English (for coordination with the research team) and completed an online training session delivered by EU-PFF, ELF and COCOS-IPF consortium members on topics such as study invitation approaches, the topic guide, group moderation and reporting (supplementary material B). A co-moderator (either a patient representative, staff member of a local patient organisation or a consortium professional fluent in the local language) assisted and took notes.

Given that we were unable to identify a Turkish patient representative fluent in English, staff from our consortium partner in Turkey prepared and conducted the focus group, adhering to the same procedures.

A predefined topic guide (supplementary material C) structured the discussions. The guide was translated into national languages and reviewed by the local moderators. It included standardised instructions and three lead questions:

• Question 1 (Q1): “For me (or patients with PPF), an important aspect of my health or wellbeing is to…”.

• Question 2 (Q2): “For me (or patients with PPF), being not in good health means…”.

• Question 3 (Q3): “What is the one thing you would like your doctor/specialist to ask you, or to consider, regarding your health/wellbeing (that they are not yet doing?)”.

We collected basic sociodemographic information, including type and stage of disease, relationship status, educational level and occupational status. A modified nominal group technique approach [21] was used to structure conversations, ensuring all participants could provide their perspectives. The moderators summarised the results in a standardised template, encompassing aggregated and verbatim information. Sessions were video recorded, accessible only to the moderator, and erased once the discussions were summarised in the standardised template. Reports were translated into English. All translations were carried out by a certified medical online translation service (Blend Express, www.getblend.com). Focus groups were organised online via Zoom (Zoom Communications, Inc. 202X, license for professionals) and lasted ∼2 hours.

Participant recruitment and eligibility

Participants were eligible if they: 1) had a self-reported diagnosis of IPF/PPF (see supplementary material A); 2) were fluent in the respective national language; and 3) were willing to represent the views of people with IPF/PPF in a patient expert role. Caregivers were eligible if willing to focus their input on patient-related outcomes (and not on their own needs as a caregiver). Lung transplant recipients and their caregivers were excluded because they were considered no longer actively participating in the IPF/PPF care process.

Participants were recruited via e-mail through purposive sampling, using the networks of the respective local patient organisations. Recruitment aimed to ensure heterogeneous discussion groups with variation in disease type (different forms of PPF), disease stage, gender, age, educational level, occupational status and relationship status. The study was approved by the Ethics Committee Research UZ/KU Leuven (s67932). Information was provided in written form (five languages), followed by phone calls upon request. Participants gave informed consent prior to participation. The sessions took place between 14 August 2023 and 4 January 2024. Data were anonymised and confidentiality was ensured throughout.

Data analysis

We conducted an inductive thematic analysis following Braun and Clarke's framework [22] and guided by an interpretivist perspective [23], treating statements from moderator reports as codes to identify major and minor themes. The analytic process was grounded in co-creation, recognising the reciprocal influence of participants’ accounts and researchers’ interpretations. The criteria of Nowell et al. [24] were used to enhance our analysis’ trustworthiness.

Initial theme development was undertaken by two psychologists, one with methodological engagement in qualitative approaches and one with extensive applied experience, under the supervision of two senior psychologists with longstanding expertise in qualitative methods. Reflexivity was maintained through team discussions (including with ELF and EU-PFF co-investigators) and written feedback.

National focus group (co-) moderators subsequently reviewed whether the themes reflected their group discussions, either during an online meeting or via e-mail. Their feedback informed final revisions of the thematic structure.

Results

Demographic information

A total of 36 subjects participated in the five focus groups (30 patients and six caregivers; 24 (66.7%) male; 29 (80.6%) with IPF). Table 1 summarises the sociodemographic characteristics. Moderator details are shown in table 2.

TABLE 1.

Sociodemographic information

	BE	GR	NO	TR	UK	Total (%)
Participants
Patients	5	6	8	5	6	30 (83.3%)
Caregivers	1	2	0	1	2	6 (16.7%)
Age group, years
40–59	1	0	1	2	2	6 (16.7%)
60–75	5	8	5	2	5	25 (69.4%)
>75	0	0	2	2	1	5 (13.9%)
Sex
Male	3	5	5	6	5	24 (66.7%)
Female	3	3	3	0	3	12 (33.3%)
Disease#
IPF	6	7	6	6	4	29 (80.6%)
CHP	0	0	0	0	1	1 (2.8%)
Pulmonary sarcoidosis	0	0	0	0	1	1 (2.8%)
CTD-ILD	0	1	2	0	2	5 (13.9%)
Stage of disease ¶
Early	5	3	1	2	1	12 (33.3%)
Moderate	0	2	6	3	5	16 (44.4%)
Severe	1	3	1	1	2	8 (22.2%)
Relationship status
With partner	6	7	8	4	5	30 (83.3%)
Living with informal caregiver	0	0	0	0	1	1 (2.8%)
Living alone	0	1	0	2	2	5 (13.9%)
Educational level
Primary education or primary school	0	0	0	3	0	3 (8.3%)
Secondary education or high school	2	1	2	1	3	9 (25.0%)
Bachelor's degree or equivalent	3	3	6	2	3	17 (47.2%)
Master's degree or equivalent	1	4	0	0	2	7 (19.4%)
Occupational status
Working	0	1	1	0	2	4 (11.1%)
Retired	6	7	7	6	6	32 (88.9%)

BE: Belgium; GR: Greece; NO: Norway; TR: Turkey; UK: United Kingdom; IPF: idiopathic pulmonary fibrosis; CHP: chronic hypersensitivity pneumonitis; CTD-ILD: connective tissue disease-associated ILDs. ^#: based on diagnoses and disease severity as reported by patients and by caregivers on behalf of the persons they care for; ^¶: assessed by moderator – early=few symptoms and limited impact on daily life, moderate=significant breathlessness, end stage=oxygen therapy.

TABLE 2.

Local patient organisations and (co-)moderator characteristics

Country	Local patient organisation	Moderator	Gender	Co-moderator	Gender
Belgium	Belgische Vereniging voor longfibrose	Patient representative	Male	Researcher	Female
Greece	Hellenic Pulmonary Fibrosis Association	Patient representative	Female	Patient representative (preparational assistance only)	Female
Norway	LHL – The Norwegian National Patient Organisation for Heart, Lung and Stroke	Patient representative	Male	LHL representative	Female
Turkey	Researcher-led recruitment	Psychologist (researcher)	Female	Pulmonologist (researcher)	Female
United Kingdom	Action for Pulmonary Fibrosis	Patient representative	Male	European Lung Foundation representative	Female

Qualitative results

The reports yielded 143 statements, which were collated into 10 major and 37 minor themes (Q1 and Q2). Health expectations (Q3) revealed one additional major theme with 11 minor themes (figures 1 and 2; supplementary material D). Statements were assigned to multiple themes where relevant to capture multidimensional content. The 10 major themes derived from Q1 and Q2 emerged across four broader areas reflecting different aspects of how participants defined and experienced health – encompassing social and relational aspects, adaptive strategies and activity, physical symptoms and emotional wellbeing, and overarching perceptions of quality of life.

FIGURE 1.

Overview on aspects of health from a patient perspective (Q1 and Q2). ^#: specific symptoms mentioned during the focus groups are – fatigue/low energy, breathlessness/shortness of breath, pain, cough, new/unexpected symptoms. ^¶: minor themes – being able to live life as “normal” as possible/not being able to live life as “normal” as possible (Q2).

FIGURE 2.

Identified themes regarding expectations towards healthcare providers and the care process (Q3).

Understanding, respect and support

Participants described the importance of being met with understanding and respect, emphasising emotional acknowledgement, empathy and social support as key aspects of good health. They wished for recognition of the limitations the disease imposes on their everyday lives (“Have it acknowledged that your life gets smaller […]”) and for ways to communicate this to their families (“know how to speak to my family about it”, UK). Peer interactions through rehabilitation programmes and patient advocacy groups were valued as opportunities to share experiences and feel understood (BE), while UK participants noted the importance of not feeling stigmatised for using medication (“Know that it is okay to take prescribed medication […] and not seen as something negative”). Lack of understanding in the social environment was seen as burdensome, especially when the severity of the disease was overlooked (“people just say, “you look good’”, BE). This was experienced as particularly painful when it occurred within the family context: “The children's lack of understanding really hurts me. I feel alone sometimes” (BE).

Relationships

Across groups, participants described maintaining good relationships as an essential part of good health. Participants valued being able to spend time with loved ones, express affection and continue caring for others (“show love to my wife”, GR; “Being able to continue caring for grandchildren such as picking them up from school”, BE). Such connections can be seen as providing a sense of purpose (“Holding on to spent time with the grandchildren”, BE), yet may also carry emotional challenges. Some participants expressed frustration over no longer being able to care for grandchildren (“Being frustrated if I cannot take care of my grandchildren due to my health”), while others reflected on relational consequences of living with the disease (“When you live together, you have the disease together”, GR).

Participation

Participants emphasised the importance of social and cultural participation, such as being “able to participate in cultural events or family events” (GR) and to participate in social activities, such as gathering with friends (“[…] occasionally, I feel mentally exhausted too, which prevents me from social engagements”, TR). Taking part in life as much as possible to the extent the condition allowed (TR), including the ability to continue working (GR), was seen as central to good health.

Together, these themes can be seen as reflecting related yet distinct facets of social connectedness in the context of illness: emotional recognition, the ways in which relationships are maintained and enacted in everyday life and the experience of belonging and participation in social and cultural life.

Coping

While social connectedness may provide a sense of belonging, participants also described personal ways of maintaining what they saw as good health through adapting to change, finding new routines and developing coping strategies in daily life. Coping-related approaches emerged as a recurring theme across groups (BE, NO, UK) with participants describing strategies such as acceptance, optimism (“not thinking too much and keep on going, see what will come next”, BE), humour and valuing meaningful moments. They emphasised the importance of information for coping with the disease (“if you know and understand what is happening, you can cope with each day better” […] UK) and of accepting help and care while “learning to know yourself all over in this new setting” (NO). Alongside these psychosocial strategies, participants described self-care practices as part of coping with the disease, such as listening to one's body, maintaining a healthy environment (BE) or travelling to milder climates (NO). These accounts can be understood as a continuous process of adaptation, including shifts in perspective – from focusing on loss to valuing what remains. As one participant expressed, “No more looking at what dishonours us, but what we have” (BE).

Ability to move, to be active and to carry out everyday tasks

Participants across countries emphasised physical activity and carrying out daily tasks as central to their sense of good health. They linked keeping up daily routines and being able to move to feeling well (“being active and involved until the disease limits me”, TR). For some, good health meant preserving freedom of movement and the ability to enjoy life (“to be able to go on vacation, enjoy my friends and the activities I want to do”, GR), while others emphasised doing as much as possible within personal limits (“do as much as I am able on a daily basis”, UK). Yet, participants also reflected on how physical limitations challenged their sense of health, expressing frustration over a loss of mobility and activity compared to earlier life stages (NO), reduced mobility due to breathlessness and frustration over “being unable to run daily activities” (TR).

Independence and control

Participants in Greece, Turkey and the UK stressed the need to maintain independence and a sense of control over their symptoms. They wished to manage everyday tasks without burdening others (“to be able to be independent and self-functional. Not to be a burden on others”, GR). In the UK, having control over symptoms was emphasised (“have symptoms that I can control”). Needing help from a caregiver (BE), feeling like a burden to family (GR) and the limiting impact of oxygen therapy were described as burdensome (“[…] I wish I hadn't been entirely dependent on oxygen. For me, wellbeing is to run my daily activities without oxygen or a companion”, TR).

Taken together, these themes illustrate how participants sought to preserve a sense of agency, mobility and independence as part of good health amid change.

Symptoms and side-effects

Participants described good health as the absence or control of symptoms such as breathlessness, cough, fatigue and treatment side-effects (“not to suffer from the cough”, GR). One UK participant summarised: “If I could live without the breathlessness, I'd be the happiest person on earth.” Some associated good health with symptom relief or fewer side-effects, noting how symptoms and side-effects disrupt everyday ease.

In contrast, poor health was characterised by the experience of breathlessness (BE, NO, TR), persistent cough (BE, NO, GR, TR), fatigue (“not being able to get up from the bed”, TR), chest discomfort (BE), digestive issues (GR, BE), and loss of appetite (BE, GR). Participants also highlighted the distress of sudden or unexplained symptoms (GR, TR) and a general sense of physical unwellness (“I can sense when I wake up and feel my body what kind of day this is going to be”, NO). Medication side-effects further limited spontaneity – “the carefreeness is completely gone. Now you have to think twice if I just want to go do some groceries […]” (BE).

Emotional wellbeing

Emotional wellbeing was described as a key element of good health across groups. Participants emphasised emotional stability (“less anxiety and stress”), acceptance of the disease (BE), hope for the future – such as receiving a transplant or having “something to look forward to” (NO) – and the ability to enjoy life (GR). In contrast, poor health was associated with emotional burdens like stress, anxiety, sadness and frustration (“when I am sad and can't regulate my oxygen levels”, GR). Participants reported increased stress since diagnosis (NO), anxiety due to breathlessness (“when travelling, even in public transport, the probability of my dyspnoea getting worse makes me insecure and anxious”, TR) and fears related to prognosis (“we all have a lot of fears. For example, I am thinking how many more times will I be able to put up the Christmas decorations?”, BE).

These themes illustrate the close interplay between physical and emotional dimensions, showing how symptoms, side-effects and emotional wellbeing are intertwined in shaping participants’ overall sense of health.

Quality of life and maintaining normality

The concepts of “quality of life” and living life “as normal as possible” came up as broader concepts. While these headings overlap with previously discussed categories – such as symptom burden, emotional wellbeing or mobility – they are presented separately, as participants themselves used the terms “quality of life” and “normality” to express their experience.

Quality of life

Participants in GR and the UK used the term “quality of life” directly when describing what good health meant to them. For some, this meant hoping that “medicine will not change my quality of life” (GR), or to have “quality and not quantity of life” (UK). During feedback meetings, patient moderators emphasised that quality of life was a central concern echoed across all focus groups, even if not always explicitly.

Living life as “normal” as possible

In Norway, the ability to “live […] life as normal as possible” was described as an ongoing challenge. Participants in NO, GR and the UK linked good health to the ability to maintain normality, including keeping a steady pace of living (“keep my normality and my everyday life in the same pace”, GR; “do things I have done in the past”, UK). In contrast, poor health was associated with the loss of this normality (“not being able to live like I used to […]”, NO).

Expectations towards healthcare providers and the care process

Participants’ responses to Q3 reflected a broad spectrum of unfulfilled expectations towards healthcare providers, centring on competence and coordination, information and person-centred care.

They wished for well-trained and coordinated healthcare teams familiar with the disease and current treatment standards (“The doctor getting it right in the first place and knowing where to send you because they have an idea of what it is”, UK). Participants further described the importance of being monitored by a team of experts rather than by a single professional (“I want to be monitored by a team of experts. Not just from a pulmonologist. I don't know who to turn to when I have questions about different matters”, GR).

The desire for holistic care appeared repeatedly: participants wanted to be “treated as a whole person” (UK), to have sufficient time during consultations and to feel that the impact of the disease on caregivers and family members was acknowledged (“In nine years we were asked once how we are”, UK). Others wished for guidance on how to “stay healthy” beyond medical treatment and for their doctors to “ask […] about my quality of life and suggest new things according to scientific developments” (GR). This included taking more in-depth personal medical histories and the opportunity to play an active role in their care (“I would just like them to be up to speed with me. I would like them to know what my medication is instead of me telling them what I'm on every time”, UK).

Participants also reported a lack of “quality information” throughout their illness, including the need to better understand the disease ("the more you are told and spoken to – and the more you are listened to – the easier it becomes to actually live through it”, UK), explanations of treatment options (UK, GR) and a clear point of contact (TR, UK). Suggestions included regular informational meetings and open conversations about prognosis and end-of-life care (“know more about how my prognosis will go”, “know what my end of life will be like”, BE, UK). Mental health emerged as an additional concern (UK, BE), indicating a need for referral to support services (“There is a lack of support with your mental health and wellbeing. There is no support when you are first diagnosed […]”, UK).

Discussion

This study explored how people with IPF/PPF define “good health” and what care aspects they consider unmet. Participants across five European focus groups described health as a multidimensional concept, encompassing social connectedness, adaptive strategies and activity, physical and emotional wellbeing, and overarching perceptions of quality of life and normality – extending beyond respiratory symptoms. In addition, participants also identified specific needs regarding care, such as access to information, holistic support and coordinated, person-centred care.

Our findings partially align with earlier studies on unmet needs in IPF/PPF [14–17, 25, 26]. Reviews highlight psychological impact following diagnosis, high symptom burden, emotional support needs, inadequate information provision, limited access to palliative care and systemic barriers in healthcare delivery [14, 16, 17].

Considering these results, our study offers a novel perspective: previous research has primarily been led by professionals and focused on unmet care needs rather than on how patients themselves define health [14, 17]. By contrast, this study was led by patient representatives, thereby bringing the recent pleas for more patient involvement in research to life and proving that patients have unique expertise as full research partners. Exploring their lived definitions of “good health ” may provide a more resource-oriented perspective and inform strategies for patient empowerment.

While our analysis was inductive, our themes align closely with holistic models of health, such as the World Health Organization (WHO)'s definition and Engel's biopsychosocial model [27–29], both of which emphasise the interdependence of physical, psychological and social dimensions of well-being. Our findings give empirical texture to these frameworks by illustrating how people with IPF/PPF relate these dimensions to their own understanding of what constitutes good health.

While these models offer a broad conceptual understanding, more targeted perspectives can be drawn upon to further contextualise our findings. Hutchinson et al. [30], for instance, explored the experience of living with breathlessness, describing how patients’ quality of life can improve in the “breathing space” created by patients’ active coping and clinicians’ attentive care – an idea resonating with our findings. Similarly, our participants understood good health as encompassing adaptive processes – balancing symptom management and agency with connectedness and emotional needs. This dynamic tension of adaptation resonates with prior qualitative findings on coping in IPF that emphasise the importance of acceptance, emotional and social support, and adequate information provision for successful adjustment [31]. It also aligns with established coping frameworks that distinguish between problem- and emotion-focused strategies [32, 33], reflecting how participants pursued both practical management and emotional regulation in their everyday lives.

Admittedly, setting up patient-led focus groups in five countries simultaneously posed logistical and methodological challenges, including translation, moderator training and ensuring that participants’ voices are reported authentically, while maintaining consistency across countries [34]. While our study has several strengths, certain limitations should be noted. Our analysis was based on moderator reports rather than verbatim transcripts, which may have reduced analytical nuance. Recruitment through patient organisations may have introduced selection bias, potentially over-representing individuals with higher health literacy or engagement. In Turkey, no patient moderator could be identified. It is possible that participants were more reluctant to be open about their perspectives on good health to the health professionals, which may in part explain why fewer quotes from Turkish participants were available. Although we included participants from five countries and perspectives on health and care needs were comparable irrespective of geographical location, perspectives from other countries may differ. Future research should therefore test our findings in more diverse contexts and assess whether patient-informed care models improve patients’ health in all its facets and alleviate unmet care needs.

Our findings have practical implications for clinical care and research. Patients define “good health” as extending beyond symptom control, using terms such as “quality of life” in a personally meaningful way. Understanding these meanings can enhance clinician–patient communication and guide care models that target health outcomes aligned with patient priorities [18, 26, 35].

Supplementary material

Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.

Supplementary material

01361-2025.SUPPLEMENT

Data availability

The COCOS-IPF consortium emphasises openness and cooperation. Research methodologies and study protocols can be obtained from the corresponding author by qualified researchers upon reasonable request.