Face-to-face interviews were conducted with 16 healthcare professionals and 25 patients. The interviews lasted approximately 45–60 minutes and were divided into two sections: one section comprising general questions and another comprising questions related to the patient journey (Tables 1 and 2).

First, interviews were conducted with the main healthcare professionals who usually interact with cancer patients at the hospital to identify the key points and learn about the vision and perception of the experience they believe patients live related to these interactions with healthcare professionals. Sixteen interviews were performed with the following healthcare professionals: oncologists (n = 6), surgeon (n = 1), radiologists (n = 2), nurses and oncology assistants (n = 4), nurses and pharmacy assistants (n = 2) and hospital pharmacists (n = 1). Subsequently, 25 cancer patients (10 early breast cancer patients, 5 metastatic breast cancer patients and 10 lung cancer patients) were interviewed to determine their experience throughout the cycle of their disease, their relationship with the hospital, elements of satisfaction and dissatisfaction along their journey, and their expectations and needs associated with each stage. In these interviews, the points previously identified by healthcare professionals were contrasted so that patients could add or remove interactions of the journey previously drawn by the team of healthcare professionals.

Once the interviews in both groups were completed, a contextual observation was carried out. This process comprised accompanying the consultation assistants and observing the most relevant points in the hospital related to the development of the patient journey (e.g., waiting room, chemotherapy room, etc.).

To complement the data obtained in the previous phase, a structured questionnaire was distributed to 127 patients (82 patients with breast cancer and 45 with lung cancer). This questionnaire included 26 questions (7 questions on sociodemographic and clinical characteristics, 3 questions related to logistical aspects, accommodation, or infrastructure and 16 questions on the different stages of the patient journey).

The questionnaire was developed using the customer experience and patient experience methodology, based on the net promoter score (NPS) indicator21–23. The NPS is based on a single question: How likely is it that you would recommend our service to a friend or colleague? Participants respond ranging from 0 (“not at all likely”) to 10 (“extremely likely”). The assumption is that individuals scoring 9 or 10 will provide positive wordof-mouth advertising; they are called “promoters”. Individuals scoring 7 or 8 are considered indifferent (“passives”). Finally, individuals scoring 0–6 are likely to be dissatisfied customers and are labelled “detractors”. The NPS is then calculated as the percentage of “promoters” minus that of “detractors”19.

To ensure rigorous analysis, all the interviews were conducted by an external consultant from a consultancy firm specialized in Patient Experience (IZO), and subsequently reviewed and validated by the project coordinators. The patients’ emotions, reported or observed, were classified according to Plutchik's Wheel of Emotions24.

Quantitative data were created from the qualitative questionnaire. According to the NPS methodology20, counts were calculated for questions using a scale of 0–10 points, grouped into promoters or satisfied (score 9–10), neutrals (score 7–8) and detractors or dissatisfied (score 0–6), as has been previously stated.

After that, a thorough analysis was performed by the external consultant to correlate the qualitative and quantitative data and analyse the categories and meaning that resulted. This approach was applied to develop a process map that ensured a comprehensive representation of the patient journey.

At this stage, only the interaction of “my day-to-day” was considered. Patients at this stage showed a functional level of experience, with most commenting that their life met their expectations in relation to their lifestyle and personal plans (Figure 1).

Figure 1.

My life before diagnosis stage and discovery stage.

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Six interactions were described: 1) a warning sign appears around my health; 2) I undergo diagnostic tests; 3) I wait for the results of the diagnosis; 4) I confirm the diagnosis of cancer; 5) I discuss it with my social environment (family, friends, work); 6) I am informed about my disease and treatment (Figure 1).

Regarding the patient's experience at this stage, the patient's expectations of healthcare professionals and hospital procedures were met. However, several satellite experiences were found in the same interaction, reflecting those certain processes are not standardized or that, the patient experience can be very different depending on who performs them.

In the initiation stage, the following interactions were collected: 1) I agree to start treatment; 2) I attend my first chemotherapy session; 3) I undergo surgery; 4) I start oral treatment (Figure 2).

Figure 2.

Initiation stage and treatment stage.

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In patient interviews, these interactions are critical because they represent a high degree of emotional and physical stress that must be experienced repeatedly over months or years. Additionally, at this stage, the patients’ experience may be negative, because expectations of interaction with the hospital are not met. The reason is likely the long waiting times to be attended to or receive services in the hospital and negative perceptions of waiting room facilities for tests, consultations, and treatment administration processes.

During the treatment stage, six interactions were defined as follows: 1) I received more cycles of chemotherapy; 2) I received other treatments (radiotherapy, immunotherapy, hormonotherapy); 3) I faced the effects of the treatment; 4) I received medicines from the pharmacy (oral treatment); 5) I changed my habits; 6) I found and received support (Figure 2).

At this stage, the patients reported that the waiting times again affected their experience. Additionally, they mentioned incomplete institutional support to better understand and manage the adverse effects of treatments and changes in habits due to the disease. Thus, the patients valued this stage with a level of experience between basic and poor because, the minimum expectation was met for some patients but not for others, generating a negative memory.

Four interactions were defined at this stage: 1) I underwent follow-up examinations; 2) I attended an oncology or a surgical visit; 3) I had tumour relapse or disease progression; 4) I returned to oncology treatment (Figure 3).

Figure 3.

Follow-up stage and my current life stage.

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In the interviews with the patients, the importance of this stage was indicated because it allows them to understand the evolution of their disease. The experience reported by patients was positive concerning the frequency of testing, type of tests performed to make an accurate diagnosis and visit quality. However, critical points were observed regarding the waiting times that patients should assume both to attend follow-up consultations and receive oncological treatment when they relapse.

At this stage, only one interaction was determined: 1) continue with my life (Figure 3).

Patients reported that one of the main goals of this stage is to have a good quality of life and resume their personal routines and projects. The experience reported by patients regarding the hospital was poor because, they believe that they did not receive support to continue with their daily lives. However, they mentioned the substantial effort made by the healthcare professionals team to ensure that treatment and care were as good as possible.

Regarding quantitative analysis, a positive score (46.03%) was obtained for the NPS indicator of the hospital. The reason is that, 60.0% of the patients were promoters, indicating they were satisfied with the hospital service, their expectations were met in several patient travel interactions, and they had positive memories of their hospital experience. The most relevant reason patients reported was the attention received by healthcare professionals at all stages of the patient's journey (86.5%), followed by the ease of access to treatment (39.7%) (Figure 4).

Figure 4.

Net Promoter Score indicator.

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In relation to interaction with healthcare professionals, more than half of the patients (52.8%) indicated that the reference person in the hospital is their oncologist, both because of the clinical approach and because of the emotional bond created over months or years of follow-up.

Finally, regarding the stages of the patient's journey, the quantitative analysis focused on exploring the four stages at which patients interact directly with hospitals, healthcare professionals and services (discovery, initiation, treatment, and follow-up). At the discovery stage, one of the most important moments for patients was the diagnosis. Most of the patients (70.0%) believed that this was a quick process and that their expectations in terms of waiting time were met. At the initiation stage, patients mentioned that preparation for the disease and receiving support at this stage are two key aspects; however, only 48.0% of patients reported having received help from hospital professionals. At the treatment stage, 50.0% of patients expressed that they had not used the pharmacy service or that they had no information about it. At the follow-up stage, patients reported receiving less support from the hospital to continue with their daily lives.