The Unmet Needs of People with Chronic Obstructive Pulmonary Disease: A Systematic Review of Qualitative Findings

ABSTRACT

The complexity of chronic obstructive pulmonary disease (COPD) can negatively impact the lives of people with the condition and compromise their capacity to take care of their needs. Unmet needs can then lead to significant morbidity, unpleasant emotional experiences and a poor quality of life; thus this systematic review aimed to identify, evaluate and synthesise the qualitative literature on the unmet needs of people with COPD. A qualitative meta-synthesis was performed according to the Joanna Briggs Institute method. A systematic search of five databases was conducted, searching for articles published from January 1995 to May 2017. Eight papers were identified. Two researchers extracted the data and independently assessed their quality. The total sample of people with COPD included was 108. Nine categories were derived from 49 findings, and aggregated into three synthesised findings: (1) people with COPD have unmet needs regarding information about the disease; (2) people with COPD have unmet physical, emotional and social needs, due to the disease symptoms and treatments; and (3) people with COPD have unmet care needs. This review showed qualitative evidence regarding the dimensions in which people with COPD express their unmet needs. The needs that are mainly unsatisfied include physical, psychosocial, informational and practical aspects, as well as the need for healthcare professional care. A global approach, which includes the areas identified by our findings, could lead to an improvement in the care of people with COPD and could improve the self-care management of those individuals who do not correctly identify their needs.

KEYWORDS:

• Care needs
• meta-synthesis
• chronic obstructive pulmonary disease
• qualitative research
• unmet needs

Introduction

Chronic obstructive pulmonary disease (COPD) is a lung disease characterized by a reduction in the airflow within the airways, and persistent respiratory symptoms (1). As the disease severity increases, a progressive reduced supply of oxygen to the body could be present (2). COPD is currently the fourth-leading global cause of death, and is expected to become the third-highest cause of mortality worldwide in 2030 (3). The incidence of the disease is steadily increasing in Europe, North America and in Asia, where the population has greater exposure to risk factors, such as smoking and environmental pollution (4).

The therapeutic approach to COPD varies according to the stage of disease and the occurrence of exacerbations. The treatment strategies entail the use of drugs, including bronchodilators and corticosteroids, long-term oxygen-therapy and respiratory physiotherapy, as well as palliative care in the terminal phase of the disease (1). In addition, self-management educational interventions are carried out to improve the level of respiratory function and therapeutic adherence, and to reduce the occurrence of exacerbations (5). The complexity of COPD, which results from differences in the evolution of the disease, the various therapeutic approaches, frequent exacerbations, the lack of home-based management of symptoms, and reduced social and family relationships, can have a negative impact on the everyday lives of people with the disease and compromise their capacity to take care of their needs (6). These needs can be defined as being the condition of a person being in demand of some necessary, desirable or valuable action or support to achieve optimal well-being (7).

Healthcare professionals can help individuals with COPD to meet many of their expressed needs, which are related to debilitating physical disease symptoms, treatments and psychological and social issues, for example (8, 9). However, despite continuous efforts, there remain some needs that healthcare providers are not able to satisfy or recognise. Moreover, people with COPD can present latent needs – needs of which they are unaware or they are not able to express (10). These needs thus represent unmet needs, and include those that a person reports as not being satisfied or those that they themselves do not recognise (11, 12). Unmet needs can lead to significant morbidity and unpleasant emotional experiences, such as a feeling of vulnerability, sadness, and social isolation, which could hinder their ability to efficiently manage their disease (6).

Previous qualitative studies have explored the different needs of people with COPD, investigating the reasons why they are, or are not, satisfied with the efforts of healthcare personnel (13). Although individuals spontaneously act in response to a perceived need to take control of their body and to continue living with the disease (14, 15), healthcare personnel frequently offer only limited support, due to inadequate resources and time pressure (16).

To the best of our knowledge, no studies have summarised the literature on the perceived experiences of unmet needs from the perspective of people with COPD. A qualitative synthesis can be fundamental in identifying evidence that can help healthcare professionals to support such individuals to meet their needs (17). Therefore, the current literature review aimed to identify, evaluate, and synthesise the qualitative research that has been conducted on the unmet needs of people with COPD.

Methods

Design

This literature review was performed using the Joanna Briggs Institute (JBI) method for synthesising qualitative studies (18). This approach, defined as meta-aggregation, aims to produce evidence on a particular topic to inform clinical practice, and it uses a three-step process. In the first step, the findings of primary qualitative studies, represented by categories, themes, metaphors or concepts, as reported by the original study authors, are identified. In the second step, categories are extracted from these findings, based on similarity in meanings. In the final step, the derived categories are aggregated to form a set of synthesised findings that can be used to generate recommendations for practice (18). Specific Qualitative Assessment and Review Instrument (QARI) software, created by the JBI to conduct qualitative reviews, was used to guide the review process. The present review has been reported according to enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) guidelines for qualitative reviews (19).

Search strategy

A three-step search approach was used to find the relevant literature, according to the JBI recommendations (18). Initially, a limited search on the PubMed and CINHAL databases was carried out to identify the most appropriate keywords and index terms related to the review question. A second search, using a broad range of identified keywords and index terms was conducted on PubMed, CINAHL, PsycINFO, Embase, and Scopus. The reference lists of all identified papers were then searched to retrieve additional relevant studies. The search was limited to studies published in peer-reviewed journals from January 1995 to May 2017 in English, Italian, French, Spanish, and Portuguese. Theses, dissertations, abstracts in proceedings and other unpublished papers were excluded.

The primary search terms were as follows: COPD, chronic obstructive lung disease, qualitative study, qualitative research, health services need and demand, supportive care need and unmet need. An example of the search strategy used on PubMed is reported as Supplementary Material in Table S1.

Inclusion and exclusion criteria

Type of studies

Qualitative studies, such as phenomenology, phenomenography, descriptive qualitative, grounded theory, ethnography, and action research were considered. With regard to mixed-method studies, only the qualitative results were included.

Type of participants

The identified population included individuals with COPD aged 18 years and over at any disease stage, and without cognitive impairment. Articles describing people suffering from other chronic lung diseases or lung cancer were excluded, as were those regarding the unmet needs of caregivers of people with COPD. Studies in which patients and caregivers, or patients and health professionals, were interviewed together, and in which it was possible to extrapolate the unmet needs of the people with COPD, were also included.

Phenomenon of interest

The phenomenon of interest considered was the experiences of individuals with COPD with regard to the needs that they perceived as not met. No study reporting the opinions of healthcare providers or caregivers in this respect was included. Qualitative studies reporting general experiences of living with COPD were also included if the unmet needs were also explored, and only the results related to the unmet needs were included in the review.

Context

Unmet needs related to any healthcare setting, such as primary care, hospitals and rehabilitation centres, were considered.

Search outcome

A total of 183 records were identified from the five databases and other sources, and, after reading the title and abstract, 133 of these were excluded. The assessment of titles and abstracts of the articles with regard to eligibility was simultaneously conducted by two reviewers, and any difference in the evaluation was solved by discussion. After reading the full-text of the remaining 25 papers, 17 articles were excluded because they were not qualitative studies or not addressed the unmet needs of people with the disease. The search yielded eight papers that met the inclusion criteria. The search process is illustrated in Figure 1.

Figure 1. Literature identification process.

Study quality appraisal

The selected studies were assessed for methodological quality using the critical appraisal tool of the JBI-QARI, which considers 10 criteria: congruity between methodology and stated philosophical perspective, research objectives, data collection method, data analysis, and interpretation of results; influence of the researchers on the investigation; cultural and theoretical orientation of the researcher(s); representativeness of the participants' voices; ethical approval of the study; and relationship between findings and conclusions (18). Two reviewers independently assessed the articles and the assessments were compared for agreement. As the JBI-QARI does not recommend a cut-off score for study inclusion, the reviewers agreed to include only papers that achieved a positive score in at least the following six criteria in the final synthesis: congruity in research objectives, data collection, data analysis, interpretation of results, representativeness of the participants' voices and reporting of ethical approval.

Data extraction

The following data were extracted from each paper using the JBI-QARI data extraction tool: study methodology, data collection method, phenomenon of interest, geographical/cultural setting, participants, data analysis and the authors’ and reviewers’ conclusions. Two reviewers independently extracted the findings from the identified studies with related illustrations, or with part of the text when illustrations were absent, as reported by the original authors; any discrepancy between the reviewers was solved by a consensus meeting. As suggested by JBI-QARI, the level of credibility of such findings was classified unequivocal if the finding was considered to be supported by illustrations beyond any reasonable doubt; credible if the finding was considered plausible based on the study data and the theoretical framework; and unsupported if no relationship between the data and findings was recognised. Only findings classified by both reviewers as unequivocal and credible were included in the synthesis.

Data synthesis

Two reviewers independently assembled the identified findings and clustered them into categories, based on similarity in meanings. At the end of the process, the reviewers compared the generated categories, and, in any case of discrepancies, held a discussion to reach agreement. The newly created categories were aggregated to produce a comprehensive set of synthesised findings (18).

Results

Eight studies were included, and no study was excluded based on the critical quality appraisal (20–27), as all scored greater than or equal to six according to the JBI-QARI. The studies had been published from 2007 to 2014. One study used an ethnographic methodology (20), while all the others used a qualitative descriptive method (21–27). The data were collected through individual interviews (20, 23–27), focus groups (21, 22, 24) and observation (20), and were analysed through thematic analysis in six studies (21–24, 26, 27), and via the constant comparative method in two studies (20, 25). With the exception of the study by Wong et al. (22), which was conducted in Malaysia, all of the studies were conducted in Western countries: one in Canada (20), three in the United Kingdom (21, 25, 27), two in Australia (23, 24), and one in the USA (26). The data were collected in community settings (20–25, 27) and hospitals (22, 26). Thus, data were obtained both from individuals experiencing COPD exacerbations and people with stable disease. The total sample of people with COPD included was 108; most were male (64.6%) and in an advanced stage of disease (82.3%, GOLD 3–4). Fifteen individuals were in oxygen therapy (20, 24). A detailed summary of the studies included is shown in Table 1.

Table 1. Characteristics of the included studies.

Author/Year [code]	Country/Setting	Aim	Population	Method	Data collection	Data analysis	Methodological quality appraisal^a
Wilson et al. 2008 (20) [A]	Canada, Community	Determine the care needs of community-dwelling Canadian elderly patients with advanced COPD	12 advanced COPD patients in oxygen therapyAge > 64 yearsNo sociodemographic data specified	Ethnography	Individual repeated interviews, observations	Constant comparative	9/10
Gruffydd-Jones et al. 2007 (21) [B]	UK, Community	Identify the needs of COPD patients following discharge from hospital after an acute exacerbation	6 patients after hospital dischargeNo sociodemographic data specified	Qualitative descriptive	Focus groups	Thematic analysis	9/10
Wong et al, 2014 (22) [C]	Malaysia, Hospital, community	Explore the unmet needs of patients with COPD that could improve the quality of life^b	18 menMean age (range) = 72.3 years (52–89)FEV1/FVC (mean) = 59% (SD 12.8%)	Qualitative descriptive	Focus groups	Thematic analysis	10/10
Crawford et al. 2012 (23) [D]	Australia, Community	Explore the needs of patients with end-stage COPD to develop recommendations for a model of care^b	15 advanced COPD stage patients (9 men)Mean age (range) = 67 years (53–79)7 singles, 8 married	Qualitative descriptive	Individual interviews	Thematic analysis	7/10
Philip et al. 2011 (24) [E]	Australia, Community	Explore the point of view of patients with COPD and healthcare professional focusing on information needs and treatment preferences^b	10 patients (6 men)Median age (range) = 67 years (55–76)3 patients in oxygen therapy	Qualitative descriptive	Individual interviews	Thematic analysis	9/10
Ellison et al. 2012 (25) [F]	UK, Community	Understand the mental health needs of patients with COPD	14 patients (7 men)Mean age (range) = 64 years (49–79)7 patients with caregiver	Qualitative descriptive	Individual interviews	Constant comparative	9/10
Schroedl et al. 2014 (26) [G]	USA, Hospital	Identify the unmet healthcare needs of patients with COPD hospitalized for acute exacerbation	20 patients (9 men)Median age (range) = 69 years (52–83)6 Caucasians, 12 Black-Americans, 2 Asians5 married, 15 singlesMedian FEV1 (range) = 39% (22%–69%)	Qualitative descriptive	Individual interviews	Thematic analysis	8/10
Hasson et al. 2008 (27) [H]	UK, Community	Explore the potential of palliative care among people with end-stage COPD	13 patients (10 men)Median age (range) = 65 years (45–65)Length of COPD: 1 to 10 years	Qualitative descriptive	Individual interviews	Thematic analysis	9/10

COPD = chronic obstructive pulmonary disease; FEV1 = forced expiratory volume in the 1st second; FVC = forced vital capacity; SD = standard deviation.

^a According to JBI-QARI critical appraisal tool.

^b Only data about COPD patient were extracted.

Meta-synthesis

A total of 49 findings were extracted from the studies, and were identified with an alphanumeric code in which each letter corresponded to an included study, and each number to the progressive findings retrieved from the study. All the extracted findings were classified as unequivocal or credible with regard to the quality of evidence (see Supplementary Material Table S2). These findings were aggregated into nine categories that were combined in the following three synthesised findings: (1) People with COPD have unmet needs regarding information about the disease; (2) People with COPD have unmet physical, psychological, and social needs, due to the disease symptoms and treatments; and (3) People with COPD have unmet care needs. The categories and synthesised findings are presented in Table 2.

Table 2. Synthesized findings, categories, and findings extracted from the included studies.

Synthetized findings	Categories	Study findings
People with COPD have unmet needs regarding information about the disease	Unmet needs around knowledge of COPD terminology, aetiology and prognosisUnmet needs regarding knowledge of disease managementUnmet needs regarding information on end-of-life and palliative care	Terminology [C1]Nature of COPD [D1]Understanding of disease (diagnosis, severity, and prognosis) [G1]Educational needs [B4]Knowledge of disease [C2]The utility of self-management [C5]Experiencing treatment [F4]Information and support needs [H4]Advanced care planning [D6]Optimism and treatment decisions [E1]Burden versus benefit of treatment [E2]Information and end-life discussions [E3]Views of palliative care in COPD [E4]Palliative care approach [H5]
People with COPD have unmet physical, emotional and social needs, due to the disease symptoms and treatments	Unmet physical/daily living needs	Maintaining independence [A1]Living with constraints (physical) [A2]Physical impact (physical) [C4]Impact of COPD (physical/ADL) [D2]Home oxygen (physical) [D7]Uncontrolled symptoms [G2]Physical limitations [G3]Physical and psychological effects (physical) [H1]
	Unmet emotional needs	Fear and anxiety associated with acute attacks of breathlessness [B2]
		Psychosocial limitations (emotional) [C3]
		Impact of COPD (emotional) [D2]
		Home oxygen (emotional) [D7]
		Changing identity [F1]
		Isolation and fear of dependence [F2]
		Unmet needs [F5]
		Meeting unmet need [F6]
		Emotional distress [G4]
		Concerns for the future [G6]
		Physical and psychological effects (emotional) [H1]
	Unmet needs regarding social support	Psychosocial limitations (social) [C3]
		Impact of COPD (social) [D2]
		Social isolation [G5]
		Perceived impact on carers [H2]
	Unmet needs regarding financial support	Living with constraints (financial) [A2]
		Home oxygen (financial) [D7]
People with COPD have unmet care needs	Unmet needs for accessibility to healthcare professionals	Living with constraints (accessible healthcare providers) [A2]
		Reluctance to seek medical help in an exacerbation [B1]
		Follow-up after hospital [B3]
		Communication [D5]
		Health and social support [H3]
	Unmet care need for access to healthcare services	Living with constraints (transportation) [A2]
		Physical impact (environmental barriers) [C4]
		Access to community services [D3]
		Care coordination [D4]
		Barriers to accessing care [F3]

ADL = activities of daily living; COPD = chronic obstructive pulmonary disease.

Studies code: A (20); B (21); C (22); D (23); E (24); F (25); G (26); H (27). The number beside the capital letter indicates the order in which the study findings were presented in the original article.

People with COPD have unmet needs regarding information about the disease

People with COPD referred to not having received sufficient information about disease aetiology, prognosis, and treatment. They required further knowledge to guide their decision-making process to self-manage the disease. Moreover, they referred to not having received information on end-of-life and palliative care.

Unmet needs around knowledge of COPD terminology, aetiology, and prognosis

The people with COPD highlighted the scarcity of information regarding COPD risk factors and aetiology (22). A lack of information meant that individuals did not recognise the causes of their condition (26). For example, they did not know that cigarette smoking could be a direct cause of the development of COPD, and instead identified old age, an improper diet, or environmental pollution as causes: ‘I mean, I had not smoked for some 20 years. It did not make any sense to me’ (26). The study findings underlined the lack of awareness of the most-used terminology regarding the disease, its treatment, and its prognosis (22, 26). As one participant stated, ‘I can't feel they've given me that information when I do not know what's going to happen eventually to my lungs. Will they get better? Or will they just get progressively worse?’ (26)

Unmet needs regarding knowledge of disease management

A lack of knowledge regarding how to gather information, assess alternative solutions, and make decisions on how to manage their disease daily was described by the participants (20, 24, 25, 22). People with COPD had difficulties in making thoughtful decisions and defining alternatives; as one person said: ‘Yes, I know very little about COPD, because when you see the doctor in-charge, they just tick-tick-tick, jot and tick. And I read the pamphlets, what those inhalers are for but there is very little’ (22). Moreover, there was a lack of education on safe and effective treatments for daily management of symptoms and disease exacerbations (21, 27). People with COPD required help in understanding the management of the disease with corticosteroids, antibiotics, and oxygen (21).

Unmet needs regarding information on end-of-life and palliative care

A further information gap was related to palliative care, which was provided in the final stage of COPD (24, 27). In particular, people with COPD reported that healthcare personnel did not address this issue, and that they would like to have more information on the management of the most advanced stages of the disease (24, 27). In addition, people in these stages demonstrated a willingness to take medications for the management of symptoms, but they wished to have more information on the risk-benefit that these treatments could offer: ‘I think the more a person can know about the end or possible scenarios the better you are to make an informed decision.’ (24).

People with COPD have unmet physical, emotional and social needs, due to the disease symptoms and treatments

The symptoms of COPD and the effects of the treatments disrupted the performance of activities of daily living of people with the disease, compromising their capacity to satisfy their physical and social needs. Moreover, the psychological effect of COPD could generate emotional needs that are not always easy to cope with.

Unmet physical/daily living needs

Shortness of breath was reported as the physical symptom that mostly determined the incapacity to satisfy these needs (23). As one patient expressed: ’I feel like that commercial with the fish out of the water – you can't catch your breath. That is how it is. It is hard because it's like that is going to be your last breath.’ (26). Other debilitating symptoms that people with COPD frequently reported as impacting on their abilities to meet their daily needs were fatigue, frequent lung infections, chest pains, lethargy, loss of appetite, and consequent reliance on drug therapy (23, 26, 27). The sum of these symptoms produced the need to find new methods to perform activities of daily living and to plan their actions during the day: ‘Everything is very deliberate. I plan every move before I make it because I do not want to go back and do it again’ (26).

Unmet emotional needs

In people with COPD, the presence of physical symptoms and living with a progressive disease could result in the onset of depression, anxiety, irritability, fear of the future, anger and frustration, which influenced their capacities to meet their own needs (20–22, 26). They reported being afraid to be alone during an acute exacerbation, particularly overnight, thus they wished to have the emotional support of a person (21, 22), as described: ‘I am afraid to stay at home alone. If anything happens, nobody can help me. I am afraid that I will be “out-of-order”(might die)’ (22). Some individuals reacted to fear by making more frequent checks, contacting their doctor in case of worsening of symptoms or using home nursing care (20). Furthermore, the loss of intimacy with their partners and the lack of participation in activities with their families influenced their emotional status (22).

Unmet needs regarding social support

As COPD worsens, individuals felt an incremental need for both family and social support. They expressed the need to continue to feel part of the community and to maintain family bonds at any stage of the disease. They felt a sense of inadequacy during social activities, as they were not able to participate as they did before (22, 25, 26). This feeling led to social isolation and an incremental unmet need for social support (25, 26). People with COPD relied on others to get help during exacerbations (22). The disease forced people to change their role within the family, and to seek the support of relatives when performing everyday activities (25–27). However, even if the support was available, sometimes they refused to ask for additional help from their relatives, with the result that they further isolated themselves for fear of exhausting emotional ties (25, 26). Furthermore, individuals reported being afraid to discuss the disease with family members, so as not to make the latter feel anxious and depressed: ‘Not really, I don't want to upset her (his wife). I just keep it (feeling) to myself. The literature tells you about who to contact, but I can't be bothered’ (27). Moreover, some people with COPD reported that they think that family members were unable to understand how they felt, physically and psychologically (25).

Unmet needs regarding financial support

The physical limitations imposed by COPD compromised the ability of people to work; sometimes they were forced to leave their job, with a consequent reduction in income. Moreover, the prescription of costly new treatments required people with COPD to increase their healthcare expenses, so they could feel financially burdened; they stated that they struggled to bear the costs of medications, oxygen and oxygen equipment expenses with their reduced incomes (20, 23). Moreover, they also reported that, due to the difficulties in performing activities of daily living, they needed to hire household help, resulting in further financial burden (20).

People with COPD have unmet care needs

People with COPD referred to having difficulty in accessing dedicated healthcare services. Furthermore, sanitary facilities without physical and architectural barriers were not always available, leading to further difficulty in accessing the care.

Unmet needs for accessibility to healthcare professionals

People with COPD reported that they were not always aware of the modalities of access to the services offered by the healthcare system and of the situations in which they could have specific assistance (21, 27). Moreover, they reported the fragmentation of care, due to the lack of communication between general practitioners and hospitals where they went in case of exacerbations or to make visits and have routine tests (21, 27). They required a personalised service on which they could rely (27). Furthermore, they reported emotional barriers in seeking care, and their sense of guilt regarding the disease is one obstacle facing them in the search for medical care if necessary (21, 25): ’The reason I refused to go to the doctor… (was because)…I thought it was self-inflicted. If it's self-inflicted why bother anyone?’ (25).

Unmet care need for access to healthcare services

Another unmet need that was reported was the difficulty of accessing hospitals and healthcare facilities, due to a lack of transport services and the presence of structural and physical barriers (20, 22, 25). In fact, individuals with COPD required accessible healthcare facilities, as their breathlessness prevented them from walking, as one participant stated: ‘Like the disabled, if we can have facilities, for old people, because the other day, I had to come to Emergency, asthma attack. I had to park my car the other block, the other side, walking down, hot sun, I nearly fainted’ (22).

Individuals with COPD reported that the absence of dedicated services for transportation meant that they had to rely on relatives, friends, or a taxi to go to their planned outpatient visits or to the emergency room (20, 25).

Discussion

This systematic review provided qualitative evidence of the experiences of people with COPD regarding their perception of unmet needs. Our study showed that there was a broad range of such needs, which included those of an informational, physical, emotional, social, financial, and care nature.

Informational, physical, and psychological needs have been the most frequently investigated in previous studies (28). Worldwide, it has been shown that people with COPD have limited knowledge of the disease, the management of its symptoms, such as shortness of breath, or the final stages of the disease (29). Incorrect or limited information could result in poor medications management. For example, many patients misuse oxygen therapy, and do not obtain any benefit from it (30). The relationship between lack of information and prevention and management of the disease has been broadly addressed in the literature (20). Patients that are not aware of the damage caused by smoking do not perceive the real impact of cigarettes on their health (31, 32). Moreover, it has been reported that people must receive accurate information on the management of symptoms and the use of palliative care in the terminal phase (33). The lack of ability to manage self-care may also be the result of a lack of patient education during hospitalisation or contact with healthcare providers. When at home, they primarily rely on their personal management, knowledge, and skills. In addition, the presence of a caregiver plays a vital role in the control of the disease (33). Responding to the need for information must be considered a cornerstone of the therapeutic approach to COPD. Efficient and effective education and consistency in the management of the disease by healthcare systems could reduce the unmet needs related to understanding and self-management of patient health (34).

The physical and psychological consequences of COPD that we identified in our review confirm those observed in other studies. Patients suffer from physical symptoms, such as frequent shortness of breath and chest pain, as well as physiological manifestations, including anxiety, depression, and frustration (31, 35). The needs for symptom reduction and treatment of psychological stress are not met as in other chronic degenerative diseases, such as Parkinson's disease and neuropathies (36). The relationship with family and friends tends to deteriorate because individuals with COPD have difficulty in discussing their condition and their future, as they think that their caregivers are not able to understand what they are feeling (37, 38). In addition, people with COPD need help with everyday activities, as the disease symptoms limit their autonomy. The isolation and loss of independence produces a sense of frustration and impotence. Health, as perceived by patients with COPD and other chronic diseases, is reduced because the disease prevents them from performing their usual activities of daily living (39); therefore, they require assistance in the management of physical and psychological symptoms, such that they can live a life as close as possible to the one they lived before the onset of their disease (40). In particular, emotional symptoms, such as anxiety and depression, are strictly related to patients’ health outcomes and are recognised as improving people's ability to cope with emotional distress (41).

As Barton et al. reported (42), reduced social and familial support could lead to increased emotional health issues, such as anxiety and depression, and a decreased sense of self-efficacy for people with COPD. Furthermore, the unmet need for social and familial support suggests the presence of inadequate self-care and adherence to treatments (42). Despite the evidence showing the pivotal role of social and familial support, the most beneficial components of social support remain unclear. Recognising the unmet social needs and the psychosocial mechanisms influencing the lives of people with COPD could positively influence their health outcomes (43).

The effects of financial barriers are highlighted in our review, and frequently lead to worries around inadequate access to medications and necessary aids (44). Economic support could improve adherence to treatments and pulmonary rehabilitation (45). Easily accessible and integrated care for people affected by COPD is pivotal for improving control of breathlessness. Ensuring that people are aware of the healthcare services available to control their physical and psychological symptoms could lead to an improvement in treatment adherence and quality of life, even for those with an advanced stage of disease (46). As reported for other chronic conditions, structural barriers and other circumstances that limit accessibility to healthcare facilities increase people's needs (47, 48). The difficulty in reaching healthcare facilities caused by barriers such as stairs could prevent people with COPD from leaving their home, so a reduction of entrance-related barriers may potentially help people to avoid home confinement (49, 50).

Healthcare professionals more frequently recognise needs related to physical symptoms management and medication issues (51, 52), but they do not consider other types of needs that are perceived by people living with COPD (53). The solution offered to overcome peoples’ needs relies on the perspective of the healthcare professionals. Thus, the qualitative evidence derived from this review could introduce the patients’ voices into the assessment of the needs of people with COPD.

Further studies, incorporating qualitative and quantitative approaches, aimed at investigating the unmet needs of people with COPD should be performed. Quantitative studies with larger samples should investigate the effectiveness of multi-professional and multi-disciplinary models of care focused on the genuine needs of patients (54). In this manner, integrated care interventions based on patients’ unmet needs could be developed to improve their quality of life and health outcomes.

The findings of this qualitative review showed the need to create care interventions that meet the authentic needs of people with COPD. A comprehensive approach that includes the identified areas could lead to improved hospital and home care, and could result in better patient self-management. An in-depth knowledge of their disease and the possible therapeutic strategies that are autonomously adoptable at home could reduce improper access to the emergency room and the number of hospitalisations. In addition, the delivery of educational programmes to patients and their caregivers could meet the needs of familial and social support; it would reduce misunderstandings between patients and caregivers arising from a possible asymmetry in the patient–caregiver dyad in the management of COPD. Easy access to integrated multi-disciplinary respiratory care is pivotal to increase quality of life and maintain stable disease. Moreover, a dedicated mobility service, the removal of structural barriers and financial support could help to increase people's access to the required care, as well as their participation in a social life.

Strengths and limitations

Our review has some limitations. The review of five selected databases and the limitation on the languages searched could have led to the exclusion of papers that could have offered a better exploration of the unmet needs of people with COPD at any stage of the disease. The unmet needs that emerged from the analysed studies are mostly representative of industrialised countries (seven studies out of eight), meaning that different cultures and healthcare systems from the developing world were not represented. Therefore, the qualitative evidence of this review may not be transferrable to other socio-cultural contexts (22, 36, 55). Despite these limitations, this is the first systematic review that has identified the perceptions of people with COPD about the types and causes of their unmet needs.

Conclusions

This review presented qualitative evidence of the unmet needs of people with COPD. Despite the continuous efforts by the healthcare system to meet the specific needs of people affected by this disease, there remain grey areas of intervention. The identification of these domains through qualitative evidence can facilitate the creation of interventions aimed at identifying specific needs and personalising patient care.

Declaration of interest

All authors declare that they received no support from any organisation for the submitted work, no financial relationships with any organisations that might have an interest in the submitted work in the previous three years, and no other relationships or activities that could appear to have influenced the submitted work.