Sarcomas are rare, aggressive tumours that represent 1% of cancerous growths in adults [
Treatment for STS is managed by multidisciplinary teams [
Patients may now receive preoperative, rather than postoperative, radiotherapy [
Insight into patients’ perceptions of treatment for STS primarily comes from quantitative research. Patients with STS can experience negative effects throughout treatment, including clinically significant levels of depression and anxiety [
One qualitative study of ten participants on the treatment-related experiences of patients with STS found that patients had concerns such as fear of changing life roles, loss of life, and impact on employment [
A recent systematic review on patient experience and quality of life following STS diagnosis found that patients experienced a range of adverse psychological and physical effects [
The present study aimed to understand whether treatment sequencing (preoperative or postoperative radiotherapy) influenced patient perceptions. It aimed to gain a deeper understanding of patients’ perceptions of treatment for STS, identify concerns throughout treatment, and consider what patients found helpful. Qualitative methodology was used because it facilitates a rich, detailed exploration of individual patient experiences and can uncover meanings and understandings of experiences.
Single, semi-structured face-to-face interviews were conducted with individuals who had been treated for STS.
Participants were identified by members of a sarcoma multidisciplinary team from records of patients treated for STS at a hospital in the North West of England. Inclusion criteria were as follows: diagnosed with STS within the last five years (between 2011 and 2016), not currently receiving radiotherapy or chemotherapy treatment, residing within the local area, good understanding of the English language, and older than eighteen years. Patients judged by the health professionals to have a particularly poor prognosis or for whom psychological well-being was a concern were not approached.
Health professionals informed eligible participants about the study during routine clinical appointments. Patients were given an information pack containing an invitation, information sheet, response sheet, and prepaid envelope. Patients without an upcoming clinical appointment were posted an information pack. Researchers contacted participants who returned a response sheet to confirm eligibility, answered any questions the participants had, and arranged an interview.
Literature on patients’ experiences throughout cancer treatment guided the design of the interview schedule [
Interviews took place at participants’ homes or in a room on the university campus and were conducted by two postgraduate researchers between June and August 2016. Informed consent was obtained from all individual participants included in the study. Participants chose a pseudonym to ensure anonymity. Interviews were audio-recorded and transcribed verbatim.
Thematic analysis was conducted with the goal of gaining a meaningful understanding of participants’ experiences and perceptions [
Fifty information packs were distributed to patients. Nineteen responded (38% response rate) and continued to interview. Participants were aged between 29 and 84 years (median 65 years); eight were female and eleven male. Nine participants received preoperative radiotherapy and ten received radiotherapy postoperatively. Six participants were currently working, ten were retired, and three were not working due to ill health. Participants reported eleven different histological subtypes of STS diagnosis; five did not recall their STS type. Time since diagnosis ranged from 7 to 48 months (median 22) and time since treatment ended ranged from 2.5 to 48 months (median 18). Interviews ranged from 36 to 76 minutes (median 48).
Three main themes were identified: care process, coping with treatment, and social relations throughout treatment. Participant quotes are presented with pseudonyms.
Many participants said they accepted their treatment plan: “
One participant who received radiotherapy prior to surgery voiced concerns and frustration over delays that the order of treatment appeared to have on treatment commencing, with delays in radiotherapy contributing to worry:
Despite initial concerns, Simon had accepted his treatment plan as he felt trust in the multidisciplinary team, but delays in accessing radiotherapy seemed to lead to anger, frustration, and erosion of his trust in the care team.
Some participants reported being given the option of treatment order and/or continuing treatment. Those who were given the option of pursuing treatment reported choosing the perceived long-term health benefits by continuing as opposed to avoiding treatment, despite potential physical or psychological side effects:
Being given treatment options affected people in different ways. Some seemed pleased, while others expressed confusion that led them to misunderstanding that they may not receive treatment and questioned why this might be:
Some participants found the apparent inconsistency between waits for appointments and urgency to be treated frustrating and confusing, as even the shortest wait can feel arduous when time is considered to be an important factor with a disease:
These findings highlight the importance of patient understanding throughout the treatment process and the difficulty of explaining treatment to patients in complex cancers such as STS where care is highly individualised. Ensuring that patients fully understand reasons behind treatment decisions, options, and possible delays may reassure patients and maintain their trust in the health-care team.
Participants typically spoke of feeling grateful to have been treated and were in admiration of the health professionals who delivered their care:
These feelings were consistent across the sample and were often reinforced when the worst possible outlook was considered, for example, loss of limb or life:
Some participants found the fear of recurrence difficult, particularly prior to follow-up medical appointments when anticipatory fear was reported to increase. These feelings were said to subside after receiving scan results at the appointment, but would gradually return with every additional correspondence and appointment. This suggests that STSs may have a long-term emotional impact:
However, people also expressed the belief that the negative emotions they felt throughout treatment were likely to subside as time passes and STS becomes less of an immediate threat:
Similarly, some participants said that they focused on a specific goal or point in the future to help them to stay motivated throughout treatment and remained hopeful that they would reach this point:
Participants said that by thinking about treatment and their current situation dispassionately, they were more able to justify and understand difficult emotions or events. Some participants appeared to do this by weighing up the pros and cons of treatment, using downward social comparisons (comparison of themselves to someone in a worse position) and not letting emotion dictate current feelings:
Increasing age also appeared to be a factor in how some individuals thought about treatment outcomes. Older participants reflected on their life up to the present time and thought of themselves as fortunate to have already experienced a fulfilled life:
By contrast, some appeared to have the perception that “
Some patients, as well as expressing a desire for less information, used distraction as a way of managing the negative feelings that sometimes accompanied treatment. Continuing to work, taking part in hobbies, and socialising were found to be helpful as participants focused on something other than STS. This seemed to increase feelings of self-worth:
It seemed that each participant displayed emotions and used coping strategies unique to them, illustrating that there is no set way of coping with treatment. Participants themselves acknowledged this variation and the uniqueness of each experience:
Participants derived psychological and physical support from a network of family, friends, community members, and social support groups. Most participants specifically reported a “significant other” (spouse, parent, or close friend) as important to helping them cope throughout treatment:
A number of participants spoke about the isolation or sense of being alone that accompanies being treated for STS, even when emotions and experiences were shared with others:
Although all participants were aware of additional sources of support, such as Macmillan (a UK charity that provides support to people with cancer), the extent to which these services were used appeared to be inversely related to how much support was received from close family and friends:
Individuals who accessed support groups reported doing so as they wanted someone to relate to. This seemed to be beneficial for participants as it enabled them to feel understood by someone who had experienced a similar situation:
Whilst social support could be beneficial, interaction with others could also be perceived to have a detrimental impact. This was notable if participants had a tempestuous relationship with others, or when participants felt an expectation to act, feel, or behave in a certain way, making it difficult for some patients to seek support. Some participants reported altering their behaviours to comply with these expectations:
The interplay between how treatment affects the patient and the demands it imposes on the caregiver/nonpatient was also discussed:
It seems that the perceived need to accommodate or consider other people’s feelings alongside coping with the impact of STS on themselves could be challenging.
Interviewees also expressed concerns over the impact their treatment and outcome may have on their children and others which, in turn, worsened their own anxiety:
However, others seemed to find the desire to protect other people beneficial; appearing optimistic around others seemed to help some participants manage their own emotions:
This study found that participants identified various concerns throughout treatment, such as a lack of understanding of what STS was and apprehension about treatment plans. Participants used a range of strategies to help them cope throughout treatment, including information-seeking behaviour, and had a general need for social support; the themes highlight the experience and aftermath of treatment for STS as psychologically challenging. These findings are in line with existing research into patient perceptions of sarcoma treatment [
In the present study, most participants did not express concerns over the order of treatment once the reasons behind the proposed treatment had been explained. Thus, evolutions in medical treatment do not of themselves seem to be impacting patient experience. Instead, concern arose from uncertainty surrounding treatment plans, perceived treatment delays, and possible side effects. Understanding of treatment for STS may come from verbal information provided by health professionals or from educational materials provided at diagnosis. Having readily available information provides patients with the option of reading further and is important for positive health outcomes, such as alleviating stress, improving confidence in treatment, and reducing levels of anxiety [
The findings show that participants can perceive different aspects of treatment to be psychologically challenging, for example, anxiety in the lead-up to appointments or the potential impact of their treatment on others. This is consistent with research which has found that treatment for STS can be the trigger of stress and negative emotions [
Participants expressed a need for social support during their treatment. Talking to others during the treatment process seemed to provide patients with someone to relate to, reassurance, and an increased sense of self-worth—implying that treatment for STS could be perceived as being more bearable if social support networks are utilised. Emotional support has been associated with positive outcomes for cancer survivors, including decreased social disruption and improved general mental health [
This study’s sample included participants with a wide age range (29–84 years), and it seems that life stage may have some influence over people’s experiences of soft tissue sarcoma. Some older adults reflected on their illness in terms of having already lived a fulfilled life, whereas some of the younger participants had concerns as to how the treatment and outcome might affect their children and parents. However, the present study did not set out to examine people’s experiences by age group, so further research which purposively samples people in different age groups could usefully provide further evidence regarding these initial findings.
The aim of qualitative research is not to generalise findings across an entire population but to provide a more detailed, nuanced understanding of experiences than would be possible with a larger sample size. The final interviews yielded no new ideas, suggesting theoretical saturation had occurred and the sample size of 19 was appropriate [
As one of the few qualitative studies to research patient perceptions of STS treatment, this research provides a much needed insight into the potential impact of treatment on patients. It was found that while the order of treatment (radiotherapy and surgery) did not itself seem to cause concern, uncertainty regarding treatment and side effects could have a negative impact. A patient’s experience of treatment can be affected by their understanding of treatment plans, their social support experiences, and their use of coping strategies. Experiences of each of these factors were diverse. Thus, it is important that health-care professionals have time made available throughout the treatment process to be able to identify and meet the individual psychosocial and information needs and preferences of patients.
The interview transcript data used to support the findings of this study have not been made available in order to protect patient privacy. Participants have consented to data being accessible only by the university research team members or by authorized individuals from the university, from regulatory authorities, or from the NHS trust for monitoring and auditing purposes. This approach was approved by the North West–Greater Manchester Research Ethics Committee.
All procedures performed in this study were approved and in accordance with the ethical standards of the NHS Health Research Authority (North West-Greater Manchester West) Research Ethics Committee and with the 1964 Helsinki declaration and its later amendments.
The authors declare that there are no conflicts of interest regarding the publication of this article.
The authors are grateful to the members of the North West Sarcoma Group for their involvement in discussing the project design and the participants who gave their time to share their experiences, as without them this study would not have been possible. This was unfunded postgraduate research completed at the University of Manchester. Publication fees have been funded by the University of Manchester Institutional Open Access Fund.