Quality of life with COPD

Active living to improve quality of life

Living with COPD can be daunting for both the patients and their caregivers, and it can significantly impact their quality of life. Symptoms such as shortness of breath, chronic cough, wheezing, and fatigue may make simple activities like walking, showering, or even having a conversation particularly challenging. Patients with COPD may experience various limitations in their everyday lives, including a loss of independence and, in some cases, a tendency to isolate, particularly during the severe stages of the disease. The inability to participate in social events and activities, as well as the chronic nature of the disease, can create feelings of loneliness and lead to depression. Furthermore, the stigma attached to COPD symptoms, such as coughing, may discourage social interactions.

The progressive decline in lung function also impacts the patients’ mental and physical wellbeing, leading to a sense of helplessness and frustration [1]. Fear of exacerbations is another source of anxiety, and patients frequently avoid activities as a self-prevention strategy. In addition, impaired mobility is a common consequence of COPD, stemming from the decreased lung function and the associated limitations in oxygen exchange. As COPD progresses, individuals may experience reduced exercise tolerance, muscle weakness, and fatigue, making routine physical activities more challenging.

The financial implications can also be overwhelming. COPD often requires sustained medical care, medications, therapy, and sometimes home modifications for improved accessibility. This may place a significant financial burden on both patients and their caregivers. Increased accessibility to affordable healthcare, medications, and support services is necessary to reduce the financial burden on patients and caregivers and improve access and adherence to care. Furthermore, there is still no cure for COPD, and although the existing pharmacological options have an effect on lung function and FEV1, they are not effective in improving quality of life and survival [2].

Despite the burden, people with COPD have a strong desire to engage with physical and social activities, such as walking, domestic tasks, and socialising [3]. Maintaining an active lifestyle improves patients’ quality of life, as well as their overall mental and physical wellbeing.

Compared with the 2013 report, patients’ associations describe that awareness of the importance of measures to improve quality of life has grown among healthcare professionals and, to some extent, among policymakers. While such a holistic approach is far from being implemented for all patients, some of the surveyed countries (e.g., Iceland, Ireland, the Netherlands, and Spain) report an increasing concern among health professionals regarding the promotion of healthy lifestyle habits for COPD patients. In other countries (Italy and Spain), measures to promote active living or better quality of life still depend on the initiative of patients’ associations or healthcare professional groups. Funding is an issue for patient-driven initiatives, and Austria and Spain declare a lack of governmental funding which limits the services they could offer to support patients. Even in systems that work well (like in Ireland), the sustainability of community-based support services is jeopardised by the lack of long-term multi-annual funding that prevents planning and growing of community-based initiatives.

“Most patients do not have access to any type of programme and depend on the individual recommendations of their doctor at follow-up visits.”

COPD Patient, Spain

“I would like to be offered more tools to use to control my illness.”

COPD patient, Spain

“I can’t vacuum or wash windows, but otherwise I’m not so limited. As you can see, I bake and I like home decor, so I probably look at life quite positively.”

Lovisa Hasselquist, COPD Patient, Sweden

Exercising in COPD (English)

Ms. Ciara Feeney, Clinical Specialist Physiotherapist, explains the importance of exercise for COPD patients, highlights its benefits, and discusses Pulmonary Rehabilitation programs.

Best Practice 5

Longpunt: share your feelings around a cup of coffee

Longpunt (lung points) are peer support spaces in which patients can share the fears and frustration of living with COPD and speak with others living the same condition. Longpunt are free meetings focused on topics that are interesting for people with lung disease. During the meetings patients and caregivers can receive answers by healthcare professionals and the exchange of experiences to help deal with situations and emotions that you encounter. The Longfond organises Longpunt at approximately 60 locations in the Netherlands.

https://www.longfonds.nl/activiteiten/longpunten

Box 20

The negative impact of COPD on everyday activities

A survey conducted by the Swedish Heart and Lung Association among its members found that:

20% are dissatisfied with the treatment they receive.
40% do not know if the treatment they have is the best one for them.
40% believe that there is no good system in primary care that can “catch” those who are at-risk of developing COPD and think that the care is bad at monitoring the effects of treatment.
80% of those with severe COPD feel that their social life is limited by the disease due to fatigue and poor stamina.
A similar percentage are frustrated because daily tasks, such as cleaning or cooking, cause breathing problems.
60% state that they are worried about how their COPD will develop in the future. Women are to a greater extent more worried than men and there is a greater concern among COPD patients under the age of 65.

The survey was carried out in 2016 in collaboration with Mistat (486 responders diagnosed with COPD).

https://www.hjart-lung.se/vi-vill/vara-undersokningar/att-leva-med-kol/ (in Swedish)

COPD Patient Testimonial: Joan Alonso, Spain (Spanish)

Joan Alonso, 75 years old, explains how the disease has not stopped him thanks to sport. Everyday he goes to the gym despite COPD. But Joan has another secret to keep in shape… Playing the harmonica helps him a lot!

Staying active at work

Some patients with COPD successfully manage their condition and continue to work, while others may face challenges that lead to changes in employment status, such as transitioning from full-time to part-time work or early retirement. The symptoms of COPD may often affect one’s ability to perform certain job tasks and to travel. Additionally, the unpredictable nature of exacerbations may result in unplanned absences from work.

Interestingly, the results of a large study indicated that employed individuals with COPD experienced a lower frequency of exacerbations and fewer comorbidities compared to those “not in paid employment”. However, among the employed group, a significant portion of patients have to take days off work due to COPD. The findings suggest that slowing the progression of COPD may yield additional benefits, such as lessening the burden on healthcare resources, and enabling individuals to remain actively employed, ultimately improving their overall wellbeing [4]. Therefore, the relationship between COPD and active living, including at work, emphasise the importance of comprehensive healthcare support, also in workplaces. Such support should include measures to increase a healthy and accessible environment in workplaces and strategies to manage symptoms to allow people with COPD to maintain their productivity and quality of life.

Patient empowerment can improve treatment outcomes

The European Patient Forum (EPF) defines patient empowerment as a dynamic process that gives individuals control over their lives and enhances their ability to address issues they deem significant. This involves fostering qualities like self-efficacy, self-awareness, confidence, coping skills, and health literacy. Despite evidence favouring higher involvement of patients in the management of their condition, especially complex conditions like COPD, healthcare professionals often focus on treating diseases through pharmacological interventions rather than adopting a holistic approach that entails multidisciplinary care.

Patients with COPD face the challenge of daily medication. Adherence to treatment is crucial for gaining control over the disease, yet rates for COPD and asthma remain around or below 50%, leading to increased mortality, morbidity, and healthcare costs. Patient education, tailored to target individual barriers, plays a pivotal role in improving adherence. Involving patients in their personalised treatment plans has demonstrated positive effects on adherence [5]. The 2019 EFA “Active Patients Access Care” report sheds light on patient-reported access to care and empowerment levels, revealing existing gaps and offering recommendations for improvement. Despite patients feeling well-informed about their diseases, there is a notable lack of involvement in decision-making and limited availability of written management plans. To address these challenges, healthcare professionals should encourage patients to seek support from local patient organisations, participate in support groups, and access educational tools. In such a way, healthcare providers would empower patients to navigate their conditions with confidence, fostering a collaborative and informed approach to healthcare.

Patients’ empowerment extends beyond treatment adherence; it involves active participation in research. To date, the involvement of COPD patients in research remains below desired standards, with only 16% having participated in medical research or clinical trials. However, patients express a willingness to engage in further studies and share their data, therefore indicating untapped potential for collaboration between patients and researchers. Bridging this gap could lead to more patient-centric research, to a better understanding and management of COPD.

Fisioterapia Respiratoria (English, Spanish, Portuguese, Italian, French & German)

A series of videos with breathing exercises for COPD patients, guided by physiotherapists.

The burden of COPD on informal caregivers

Being a long-term, progressive and potentially life-threating disease, COPD places a significant burden also on the whole family and particularly to those defined as informal caregivers [6]. Informal caregivers are people who provide care and support to family members, friends, or acquaintances in need. Caregivers must also learn about treatments, must be trained on how to deliver them and on possible side effects [7] [8]. They may also face emotional challenges in coping with the stress of caregiving. Despite that, the role and needs of carers are still not well recognised.

The fragmentation of the healthcare system has been identified as an important factor that increases the workload of caregivers by creating barriers of access to healthcare systems, and fragmented treatment pathways [6]. Caregivers also experience increased workload in terms of completing paperwork, arranging, and attending medical appointments/tests, travelling to appointments, as well as covering the costs of treatment [7] [8]. Besides the increased workload tied to caring for a person with COPD, caregivers express frustration that healthcare professionals often do not involve them in treatment decisions nor acknowledge the burden of caring for the care-recipient. This lack of involvement can leave caregivers feeling undervalued and unsupported [8].

The role of caregivers should be recognised

In some of the countries surveyed, the role of informal caregivers is officially recognised, and some form of support is offered. The access or extent of support is tied to disease severity and no specific measure is dedicated to COPD patients. In Ireland, Italy, Spain and Portugal, caregivers receive some benefits, like days off from work or an allowance. Homecare support by professional caregivers may reduce the burden of informal carers. Such support is offered to elderly patients (not especially to people with COPD) in Austria, Ireland, and Italy, but in the latter two countries homecare is offered only to very sick people. Homecare in Turkey is foreseen but the offer is not sufficient to meet the demand. In Spain, homecare services and home-based follow-up visits are available only in certain regions or organised by some hospitals. In Iceland, patients are assigned to a nurse that monitors their health status and helps them to improve their health.

The Importance of Adapted Physical Activity for COPD Patients (French)

Jean-Paul Vasseur, President of Calais Respire, highlights the importance of adapted physical activity for COPD and respiratory patients. Such programmes also foster a supportive community, where patients share experiences and enjoy group exercise.

Conclusion: Healthy active living improves quality of life

A holistic approach that includes medical management, emotional support, and lifestyle adjustments is crucial to improve the quality of life of patients and their caregivers, including support groups, activities, and education. Furthermore, caregivers should be included in the treatment plan. Measures like community-based activities, rehabilitation, and active living in general should be integral part of the treatment of COPD [5]. Besides being effective in reducing exacerbations and hospitalisation, these measures improve the quality of life and the mental wellbeing of the patients. EFA and its members are actively advocating for initiatives to enhance the quality of life for patients with respiratory diseases in Europe. Raising awareness, allocating more resources, and providing financial support for these initiatives is essential to positively impact the quality of life for COPD patients.

Recommendations

Creating a Supportive Environment for COPD Patients

A supportive environment is crucial to maximize the quality of life of people living with COPD and enhance their participation in decisions affecting their care.

At national level:

Promote co-decision in personalised care and self-management plans: Incentivise the co-decision of personalised and self-management plans that capture treatment, physical activity plans, and lifestyle options.
Adopt national social plans for employment and active living: Adopt national social plans that promote employment opportunities and active living options for people diagnosed with COPD, thereby enabling them to maintain a better quality of life.
Facilitate collaboration with patient organisations: Sustain a structured and permanent dialogue and collaboration with national and local patient organisations in order to assess limitations on COPD care and prevention and co-create solutions such as community-based pulmonary rehabilitation activities.
Invest in patient organisations to diversify care options: Provide unrestricted public funding and support to patient organisations at national and local level to diversify care options for patients. This could include coordinating with the healthcare system to provide patient education, counselling, and community-based services to COPD patients. Such measures will enable greater involvement of patients in their care.
Recognise informal caregivers for COPD patients: Include COPD in the list of conditions that enable informal caregivers to be recognised for their support. Recognise financial dependency allowance and family entitlements (e.g., carers leave), proportionate to the burden and needs of caregiving.

At European level:

Identify best-practices for active living with COPD: Identify and share European best practices for policies that support active living for COPD patients, such as reasonable accommodations at work, adaptable disability schemes, and employer incentives.
Support digital health education projects: Promote and support European-level digital health education projects aimed at lung health among the ageing population. Such projects should focus on basic pulmonary rehabilitation techniques, correct breathing, and lung function maintenance.

References

1. Swedish Heart and Lung Association. Att leva med KOL. 2016. http://www.hjart-lung.se/vi-vill/vara-undersokningar/att-leva-med-kol/. Accessed 4 Oct 2023.↩

2. Stolz D, Mkorombindo T, Schumann DM, Agusti A, Ash SY, Bafadhel M, et al. Towards the elimination of chronic obstructive pulmonary disease: a Lancet Commission. The Lancet. 2022;400:921–72.↩

3. Early F, Lettis M, Winders S-J, Fuld J. What matters to people with COPD: outputs from Working Together for Change. npj Prim Care Respir Med. 2019;29:1–9.↩

4. Rodriguez MR, Small M, Fermer S. Real World Burden of COPD: Employed vs Not in Paid Employment Patients. JOURNAL OF HEALTH & PRODUCTIVITY. 2013.↩

5. GOLD. Global Strategy for the Diagnosis, Management, and Prevention of Chronic Obstructive Pulmonary Disease (2024 Report). 2024.↩

6. Lippiett KA, Richardson A, Myall M, Cummings A, May CR. Patients and informal caregivers’ experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research. BMJ Open. 2019;9:e020515.↩

7. Sav A, Kendall E, McMillan SS, Kelly F, Whitty JA, King MA, et al. “You say treatment, I say hard work”: treatment burden among people with chronic illness and their carers in Australia. Health Soc Care Community. 2013;21:665–74.↩

8. Sav A, Thomas ST, Cardona M, Michaleff ZA, Dobler CC. Treatment Burden Discussion in Clinical Encounters: Priorities of COPD Patients, Carers and Physicians. Int J Chron Obstruct Pulmon Dis. 2022;17:1929–42.↩

Previous chapter

COPD Care Access

Next chapter

Digital Health for COPD

Quality of life with COPD

Quality of life with COPD

Active living to improve quality of life

Exercising in COPD (English)

Best Practice 5

Longpunt: share your feelings around a cup of coffee

Box 20

The negative impact of COPD on everyday activities

COPD Patient Testimonial: Joan Alonso, Spain (Spanish)

Staying active at work

Patient empowerment can improve treatment outcomes

Fisioterapia Respiratoria (English, Spanish, Portuguese, Italian, French & German)

The burden of COPD on informal caregivers

The role of caregivers should be recognised

The Importance of Adapted Physical Activity for COPD Patients (French)

Conclusion: Healthy active living improves quality of life

Recommendations

Creating a Supportive Environment for COPD Patients

At national level:

At European level:

References

About

What is copd

Burden of copd

Cost of COPD

Disease awareness

COPD Prevention

COPD Early Diagnosis

COPD Care Acces

Quality of Life with COPD

Digital Health for COPD

The Impact of COVID-19 on COPD Care

Recommendations