Psychosocial consequences of diagnosis and treatment of lung cancer and evaluation of the need for a lung cancer specific instrument using focus group methodology

Two focus group sessions were organized. Participants were recruited from March to June 2015 and January to April 2016 from the outpatient clinic of the department of respiratory diseases of the Elisabeth-Tweesteden Hospital Tilburg, the Netherlands.

The purpose of the first session of focus groups was to explore all psychological and social consequences of diagnosis and treatment of LC. Patients were asked to list all their experiences (physical, environmental, and emotional) after diagnosis and/or treatment. Subsequently, they indicated their personal most important consequence. Thereafter, all input was discussed in the group to identify any other experiences until no new information came up. Finally, patients clustered all input as (1) psychological and (2) social.

The second session of focus groups aimed to examine the reliability of the themes derived in the first focus group session. In accordance with the guidelines for the development of questionnaires of the European Organization for Research and Treatment of Cancer (EORTC) [19], an issue list was created consisting of the psychological and social themes identified in the first session. An independent LC patient sample evaluated the psychosocial themes derived in the first session and evaluated the completeness of the clusters. Patients were asked to indicate a personal top 10 of the most relevant topics for each cluster (1 = most profound consequence, 10 = least profound consequence). Patients were asked to add any subjective experiences that were missing from the issue list.

Suitability for focus group participation was estimated by the oncologist (BK), based on clinical outcomes and performance status. The oncologist requested permission for a researcher to contact suitable patients. Hereafter, a researcher screened the medical records of these potential participants. Patients eligible for inclusion were (i) diagnosed with LC and (ii) 18 years or older. Exclusion criteria were (i) inability to attend the focus group meeting, (ii) cognitive problems, (iii) insufficient knowledge of the Dutch language, and (iv) participation in a previous focus group. A researcher contacted eligible patients to explain the purpose of the study, and with permission of the patient, an informative letter and invitation to participate were sent. Participation was voluntary and informed consent was obtained from all individual participants included in the study. Patients did not receive financial compensation, although patients traveling by car received a free parking ticket. All procedures were in accordance with the 1964 Helsinki declaration and its later amendments. Approval from the regional medical ethical committee was obtained (METC/jv/2013.194 protocol no. 1373).

In both focus group sessions, patients were subdivided in focus groups based on the type of treatment they received. This setup allowed for smaller and thus more intimate groups, in which patients had similar treatment conditions. The treatment type was retrieved from the medical records. The first focus group consisted of patients who had completed curative therapy (i.e., surgery or stereotactic radiotherapy). The second focus group consisted of patients with more advanced disease treated with curative intent; these patients had completed chemoradiation therapy. The third focus group consisted of patients receiving palliative chemotherapy during the time of the focus group. The subgroups were invited separately, resulting in three meetings of 90 min in both sessions. A group moderator (MT) guided the meetings in both sessions. In the first session, the moderator was assisted by a research assistant (psychologist in training), and in the second session, a researcher (ML) was present to assist and take notes. Meetings commenced with an explanation of the purpose of the study followed by an introductory round. All patients agreed to the audio recording of the meetings.

After the focus group meeting, patients completed additional questions concerning sociodemographic information (i.e., age, sex, marital status, educational level).

A grounded theory approach was adopted for analysis of the focus groups (Corbin & Strauss 1990; Glaser & Strauss 1967). Data analysis proceeded stepwise. First, audio recordings were transcribed verbatim. Second, psychological and social consequences were identified as factors and marked by means of open coding. Two authors (ML and MJT) reviewed and coded the transcripts independently to ensure face validity and data saturation. Coding was discussed among these authors. In case of coding disagreement, authors deliberated and selected the most appropriate code. Finally, all the consequences were analyzed using color coding in Microsoft Word and Microsoft Excel. First, the consequences were labeled as psychological or social, and thereafter, similar consequences were clustered into themes. These themes were listed and evaluated in the second focus group session.

An excerpt of the patient-reported psychological and social consequences is presented in Table 2. There were small differences between the subgroups, and results specific to a treatment group are explicitly reported.

Addressing the time of diagnosis, patients identified “shock of diagnosis” as a theme. Two patients reported that their cancer had been discovered during an examination for a comorbid condition. To them, the diagnosis came as a great shock because they did not feel sick or present limiting physical symptoms at that time. One patient emphasized his anger in reaction to the diagnosis because he had never smoked. Positive adaptation after diagnosis was specified within this theme by five patients in the palliative treatment, as they described acceptation of the diagnosis and a changed perspective on daily life.

“Increased emotionality” was a common theme among groups. Patients reported crying more often and feeling sad when exposed to sadness. This emotionality also occurred in reaction to non-cancer-related triggers, for example, when confronted with sadness on television or in their surroundings.

Acceptation of physical limitations’ was identified as a theme. Patients either reported ongoing frustrations such as fear, anger, and sadness caused by physical limitations, or acceptation of the physical state over time. Two patients expressed feelings of guilt towards their family because they could not participate and contribute to the household as they used to. “Insecurities about the future” was identified as a theme, especially by patients receiving palliative treatment. One patient thought that it would be easier to know that he had only several months left than having to live with the insecurity of not knowing how much time he had. Another patient expressed the opposite opinion and did not want his doctor to share information about the end of life with him.

“Fear of recurrence and/or metastasis” of the cancer was discussed in all groups, although this fear was most explicitly present in groups treated with chemoradiation and palliative chemotherapy. One patient in the palliative treatment group mentioned anxiety for diagnostic procedures and the pain they might cause. Patients treated with curative intent reported heightened awareness of physical symptoms. A cold, pain, or vague physical discomfort could trigger fear of recurrence/metastasis in this group. Finally, “general anxiety” was identified as a theme, as patients in all groups reported increased anxiety and nervous sensations in the days prior to medical checks. This fear was attributed to pain and the possibility of bad results. Patients described that fear of recurrence/metastasis faded somewhat in time because of positive medical checks.

Patients identified “influence of LC on the family” as a social theme. In every group, patients declared that their partners and children had a hard time dealing with the diagnosis and the disease, causing feelings of sadness, anger, or frustration in partners and patients. Patients mentioned changed dynamics in the family caused by LC, e.g., inability to work, time spent with the family, or inability to perform household tasks. These changes sometimes caused irritations in both patients and partners. One patient felt that he interfered with the daily routine, causing difficulties and irritations with his partner. Patients indicated that one of the hardest things was to see the sadness that the cancer induced in their children. Patients agreed with each other that cancer is not an individual disease, but that it greatly affects the family. Two patients remarked that health care professionals and the support system tended to focus on the patient, rather than the well-being of other members of the family. All groups emphasized the importance of attention and support for other family members, resulting in the theme “attention to the family system.”

The theme “response from social environment” was identified as patients from all groups noticed changes in relationships due to their cancer. Two patients said they had discovered the value of friendships and felt that they grew closer to people close to them. Six patients had negative experiences, in which friends and acquaintances avoided conversations about their LC or reduced contact altogether. Other negative social consequences were being treated as a weak/sick person, and decreased support with the passing of time (e.g., people moving on with their own lives after the initial shock of diagnosis had passed). Patients who continued smoking after diagnosis mentioned feeling judged by non-smokers. Two of four patients who were still working experienced negative “consequences in the work environment,” as they felt less involved. Two patients described “financial consequences” of LC, resulting from decreased income or high costs for physiotherapy.

Patients recognized all the consequences identified in session 1 and no additional consequences came up in the second session. Fear of recurrence was ranked among the three most important psychological consequences in seven out of ten patients treated with curative intent. All patients receiving palliative treatment indicated sadness about leaving behind partner/children as one of the most important psychological consequences of disease.

A strength of this study is the semi-structured qualitative study design, facilitating in-depth exploration of psychosocial consequences of diagnosis and treatment of LC. Patients seemed to feel free to share their experiences, resulting in in-depth conversations. Interviews were conducted in a standardized manner, resulting in clustered information and a consistent style of questioning. There are some points of improvement. As patients were selected by their oncologist, the selection procedure allowed for selection bias. Patients with poor physical condition did not participate in the focus groups, possibly resulting in an underrepresentation of psychosocial consequences specific to LC. For example, dyspnea is highly prevalent among patients with poor clinical performance and often causes anxiety and fear of suffocation [34]. This topic should be incorporated in the screening procedure, for instance, in the clinical interview. With a response rate of 58%, there is a possibility of response bias. Patients with an avoidance coping strategy are more likely to refuse participation, and the relevance of psychosocial complaints might decrease over time. Participants were diagnosed on average 17.5 months before the interview, resulting in a possible underrepresentation of LC specific consequences in our sample. The characteristics of the patients in both focus group rounds were not exactly the same; i.e., groups differed with regard to time since diagnosis. In general, this is undesirable because a good representation of patients is wanted in all groups. Fortunately, in the current study, patients in the second round, who had a shorter time since diagnosis, did not suggest any new themes. Of the patients who declined participation, 58% indicated that they were not interested or felt uncomfortable talking to strangers about health or psychosocial problems. To conclude, the study sample consisted of Caucasian participants exclusively, and studies are required to examine psychosocial consequences of LC in patients with other ethnic backgrounds.

Patients with LC face many different psychosocial challenges, which are insufficiently detected by the current screening procedures. Early detection of psychosocial complaints is imperative in order to provide adequate psychosocial care or facilitate referral to other care professionals (e.g., medical psychologist). Although this study did not indicate a need for a LC specific screening instrument, the current standard for screening still leaves room for improvement as common reported problems are regularly overlooked. Consequently, a stepped care screening method is warranted. A general screening instrument, such as the DT-PL, complemented by specific second-stage screening instruments and a personalized clinical interview (where one can also address issues such as fear of suffocation if needed) will aid health care professionals by providing an overview of the symptoms and their gravity and substantiate adequate referral. A stepped care screening method contributes to comprehensive and personalized psychosocial support for patients with LC.