The ultimate goal of healthcare is to propose interventions that increase value for patients. A simple formula to identify this value, proposed by Porter,1 is the ratio between outcomes and cost, with the focus on aspects of concern to the patient. Although patient satisfaction is traditionally assessed in relation to the care received, this approach is biased because perceptions of quality by persons without medical training may focus on less important aspects, such as satisfaction according to current health status (which yields little information regarding improvement) or according to subjective preferences.2

The Beryl Institute3 defines the patient experience as “the sum of all interactions, shaped by an organization's culture, that influence patient perceptions across the continuum of care”. The areas in which patient experience has greatest impact4 are considered to be health system integration, care coordination, end-of-life care, medication reconciliation and emergency care management. Medication reconciliation and emergency care management, in particular, have a great impact on outcomes and costs. The interest in patient perspectives is in line with the notion of patient-reported outcome measures.5

In the healthcare sector, the right to choose is exercised through personal autonomy and informed consent.6,7 In general terms, encouraging patients to become involved in decisions about their health is crucial.3,4 Evaluating the patient experience—as a way to introduce improvements in medical care—requires a systematic approach to all patient interactions with the healthcare system.

Home respiratory care8 encompasses a set of varied treatments with certain common characteristics, in particular, the participation of various individuals, the great impact on patient and caregiver lifestyles, and (almost invariably) lifelong use. Although use of home respiratory care9 has been recognized for many years to be frequently inappropriate, no data are available that point to the role of the patient in choosing alternatives. The best results would be achieved by combining objective criteria with patient circumstances and preferences. Wise et al.10 summarize this notion, and highlight the need for care packages adapted to the requirements of each patient and the availability of local resources.

The aim of this study was to collect information on the opinions, perceptions and attitudes of patients and their caregivers regarding home respiratory care, specifically, home oxygen therapy (HOT).

A total of 283 units of meaning were identified and grouped into 21 categories as listed and defined in Table 3.

The frequencies of occurrence of the categories in each of the 5 focus groups are summarized in Table 4. The importance of each category could be determined quantitatively from the frequency with which the corresponding topic was mentioned by patients and families compared to the total frequency for all 5 focus groups.

In the level 2 analysis—consisting of a comparison of categories so as to identify structural and theoretical similarities and common elements—the 21 categories that emerged in level 1 were grouped and structured into 6 thematic units or meta-categories. These 6 meta-categories were built simultaneously and interactively as the level 1 categories emerged, as shown in Table 5.

The 6 meta-categories encompassed 3 broad areas: information, impact on individuals, and problems. Based on these areas, key service delivery aspects were identified, as follows:

• •

  Information: Noteworthy were the meta-categories referring to the care provided by both healthcare professionals and by supply companies, where key elements were trust and the need for coordination.

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  Impact: Especially relevant were the meta-categories referring to psychological impact and impact on daily living, where key elements were systematic support, logistics and organization.

• •

  Problems: The salient meta-categories were those referring to discomfort and dissatisfaction, where key elements were responsiveness and evaluation.

The limitations of this study are those of any qualitative research that takes a holistic approach to the study of an everyday reality with a view to generating hypotheses and uncovering unexpected information. Patients were selected by their attending physician, a process that may be open to selection bias. However, qualitative approaches aim to identify common, systematically repeated and unexpected issues, and therefore the effect of sampling bias is minimal. Sampling in qualitative research is not the same as in quantitative research, given that no statistical study is required, nor is there any need to establish causality.

Qualitative research is useful to identify areas requiring specific interventions aimed at improving care, or to pinpoint issues highlighted by patients that require further analysis. In a review of qualitative research studies, Disler et al.15 showed that it was possible to identify—from small groups of patients with advanced COPD—key areas influencing the patient experience, namely, their understanding of the condition, the symptom burden and the psychological impact. In terms of identifying problems or critical elements, qualitative research based on small focus groups or semi-structured interviews yielded similar results for patients with sleep apnoea in qualitative research studies reviewed by Ward et al.,16 who highlighted the impact of continuous positive airway pressure (CPAP) on social relationships, symptom management and treatment complications and their association with treatment adherence.

Qualitative research does not focus on causal links or specific manifestations, but rather on opportunities to improve the patient experience regarding repeated occurrences of a problem.

The 6 meta-categories are discussed below in terms of salient features.

• 1.

  Although overall assessment of the care provided by professionals was generally positive, the study highlighted the fact that information was not always fully assimilated. For instance, different ways of coping with the disease and even of using different HOT equipment raised concerns and questions. There were also differences in the quality of care received by patients participating in, versus patients not participating in, pilot programs.

  Structured therapy education is crucial to the management of chronic diseases and especially so in complex circumstances that require HOT. Doherty et al.17 recommend structured therapy education programs as a means to ensure greater treatment adherence, better self-monitoring (spirometry and oxygen saturation values) and better responses to technical complications and decompensations. Our focus group participants also highlighted the role played by nurses and the usefulness of group activities.

• 2.

  The psychological impact of the disease and its treatment with HOT, for both patients and families, was noteworthy, although adaptation differed depending on personalities and coping strategies. References to death were rare or only mentioned in terms of clichés (“it comes to all of us”) and there was no evidence of planning in the form of advance healthcare directives or living wills. It is clear that COPD impacts both caregivers as well as patients, and social isolation was one aspect that seems to greatly affect the former.18 The focus groups sessions highlighted important elements for future studies, such as the lack of psychological support, embarrassment at using oxygen in public, and lack of respite facilities to give carers temporary relief from their responsibility whenever possible19 Therapy education programs should also carefully consider adaptation times.

  The role played by HOT suppliers has received little attention in the literature. Our focus group sessions highlighted 2 apparently contradictory positions:

  • a.

    Satisfaction due to direct contact with representatives from the oxygen supply company, who often helped confirm or interpret the information received.

  • b.

    A general degree of dissatisfaction regarding the support given by commercial oxygen therapy suppliers:

    • i.

      Distribution was often perceived more as mere delivery than as a service.

    • ii.

      Consumables did not always meet the needs of patients.

    • iii.

      Changes in suppliers were perceived as disruptive to maintenance and the provision of supplies.

  Any complaint related to these services needs to be investigated in depth. In our study, these complaints were mainly voiced by patients and their carers domiciled in 2 of the geographical areas in which the study was conducted. The discrepancy in terms of satisfaction highlights the weakness of a satisfaction survey in detecting problems with HOT services. The fact that individuals in different focus groups made complaints suggests the existence of genuine service deficiencies, although not enough information was available to enable us to assess the extent of these deficiencies. A comprehensive study to identify basic HOT service quality issues would be useful, and institutional mechanisms to record problems and propose solutions should be implemented.

• 3.

  The extent to which daily routines, relationships and social activities were affected was highly significant. The limitations imposed by illness and home respiratory care forced a change in habits, particularly in expectations regarding retirement (travel, visits to offspring, socializing, etc.). Mobility issues probably had the greatest impact on patients relying on HOT; air travel in particular is an issue that needs to be addressed.20

• 4.

  HOT logically implies discomfort for patients. Kampelmacher21 reported that over 80% of patients have problems related to HOT, with almost 40% reporting nasal problems. One especially worrying issue is safety; 1 patient in our study reported burns when using powercutting tools. Newspaper articles report hazards (http://www.mirror.co.uk/news/uk-news/jean-booth-e-cigarette-fire-gran-3412824) and even mishaps resulting in death (http://www.bbc.com/news/uk-england-merseyside-28701515) associated with the use of electronic cigarettes. However, no systematic data has been reported on risk situations and accidents related to the use of HOT. A systematic study in this regard would contribute useful information on risk situations for patients.

• 5.

  Regarding satisfaction levels, most dissatisfaction was expressed regarding the cost of the electricity required for the concentrator, no longer funded by the Spanish government. In contrast—and despite criticism of the supplier companies—study subjects acknowledged that prompt action was usually taken in emergency situations. Nonetheless, any assessment of the service overall should be approached from different perspectives, and should both quantify the problem and propose suitable responses to circumstances that hinder treatment.

Any analysis of the patient experience is only meaningful when followed up by action.22 Improvement opportunities identified directly through focus group sessions are an obvious starting point. Focus group information can also identify key issues requiring more extensive surveys. Ultimately, input from patients should be used to design services23 that take their needs and preferences into account.

Although methodological challenges exist regarding evaluation of the patient experience,24 there is no doubt that patient contributions are crucial to overall evaluation of healthcare services, and can even improve clinical safety.25 Poor communications (especially at discharge)—one of the problems identified from analyses of the patient experience26—is generally related to poor service quality. Further exploration of the results of our study in larger samples would give further insight into the patient experience with HOT and other home respiratory care scenarios.

In conclusion, this qualitative study has shown that HOT has a great impact both on the psychological wellbeing and the daily life of patients and their families. Our results also suggest a need to improve coordination between different care levels and HOT supply companies to ensure that patients and their families receive coherent and useful information.

2014/2015 SEPAR Year of the Chronic Patient and Home Respiratory Care.

• •

  Xavier Clèries participated in study design, conducted the 5 focus groups and participated in data analysis and article writing.

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  Montserrat Solà participated in study design, data analysis and article writing.

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  Eusebi Chiner participated in study design, data analysis and article writing.

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  Joan Escarrabill participated in study design, data analysis and article writing.

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  The 2014/2015 SEPAR Year of the Chronic Patient and Home Respiratory Care Group of Collaborators (Appendix 1) participated in study design and sample selection.

The authors declare that they have no conflicts of interest.