Lessons and Advice From Our Patients: A Focus Group of Sarcoma Survivors

Abstract

Background:

Sarcomas are a rare, encompassing a heterogeneous group of malignancies. Success treatment often requires a combination of surgical resection, chemotherapy, and/or radiation. These life-altering interventions can have lasting impact on function and quality-of-life. There is little known about treatment outcomes from the perspective of sarcoma patients.

Purpose:

The initial goal of this investigation was to determine the sources and categories of information patients sought at various time points in their care. In addition, we investigated how participants coped with physical and psychological issues that accompany treatment. Finally, we elicited advice on what the care team did well, and could have been done differently, during their diagnosis and recovery.

Methods:

A qualitative, focus group research method was utilized. A purposive sample of participants with a diagnosis of a sarcoma was identified. Three focus groups (20 total participants) were formed and audio/video recorded. The transcripts were analyzed to identify common themes and a scissor-and-sort technique was used to attribute participant comments to the identified themes.

Results:

Themes were identified and categorized into four major areas: 1) Information at diagnosis, 2) Relationship with care team, 3) Social support, and 4) Restoration to “normal.”

Conclusion:

We identified several areas that can be addressed to enhance patient counseling, emotional understanding, and expectations of treatment. These can serve as a guide for future research endeavors and program development.

Background

Sarcomas are a rare, heterogenous group of bone and connective tissue malignancies often affecting the extremities or pelvis. They account for an estimated 1% of all cancer, affecting over 15,000 people a year in the U.S.⁷ Standard treatment for non-metastatic sarcoma is a complete surgical resection, with variable use of chemotherapy and radiation as adjuvant treatments depending on histopathologic subtype. These dramatic and life-altering treatments can have lasting impact on the function and quality of life (QoL) of sarcoma survivors. While sarcoma survivors are known to have a physical functioning level that is below the level of functioning in the general population,¹¹ there is a paucity of reports focusing on limitations and uncertainties from the perspective of the patient.

Literature Review

A review of literature was performed to evaluate existing qualitative data regarding the unique informational needs of patients facing a sarcoma diagnosis and how those needs change over time. There have been very few studies to date that highlight sarcoma patient perspectives about these issues. Although many modern reports on results after sarcoma treatment utilize validated outcome tools specific to sarcoma patients (e.g. Musculoskeletal Tumor Society Score, Toronto Extremity Salvage Score), these do not directly consider the patients’ unique perspective regarding information desired or coping with the diagnosis, treatment, and long-term effects. In 2012, Tang and colleagues performed a systematic review of QoL studies in adult extremity sarcoma survivors and highlighted that there is no gold standard QoL measure for extremity sarcoma patients that includes emotional and social domains, rather current tools focus on subjective physical function and objective functional impairment.¹¹ Payne et al⁸ conducted a pilot support group intervention for soft tissue sarcoma (STS) patients with no evidence of disease in which patients had time for general discussion of personal concerns in addition to the use of a modified thematic counseling model to provide information regarding the disease, stress management, relaxation techniques, and coping skills. The goal of this study was to address the informational needs of STS patients and reduce psychological distress. In a 2009 prospective study by Davidge et al¹, sarcoma patient’s pre-operative expectations were associated with functional outcome. Education, dispositional optimism, tumor location, tumor stage and baseline function were significant predictors of expectations. Although numerous studies exist in the general oncology literature about information seeking behavior among cancer patients as a whole, sarcoma patients are far underrepresented in these reports, most likely due to the relative rarity of the disease. As the treatment of sarcoma, specifically the focus on limb-sparing surgery of the extremities, is unquestionably unique compared to other malignancies, an investigation designed specifically to address expectations and results of sarcoma patients is needed.

Purpose

We have observed in our clinical experience that questions of prognosis and survival are the most pressing informational needs at initial diagnosis. However, as time progresses after a cancer diagnosis and successful treatment, patients are increasingly concerned about QoL and functional issues. In order to gain a more patient-oriented perspective on this topic, we proposed a qualitative focus group of sarcoma survivors. The primary interest for this research project was to determine general categories of information (e.g. basic cancer information, survival statistics, plan of care, long-term function) patients want to know at various time points in their care, as well as the main sources of their information. Second, we investigated how patients coped with various physical and psychosocial issues that may occur with sarcoma treatment. Lastly, we elicited advice from participants on what the care team could have done differently during the course of treatment.

Methods

A focus group study design was chosen as there is limited information in the literature with regard to the patient experience over the course of sarcoma treatment and recovery, how sarcoma patients obtain information, and what information is important to them at different points in their treatment and survivorship. Focus groups are increasingly being used in health-related research in order to gain a better understanding of individual beliefs, experiences, and health-related behaviors.⁹ The focus groups were lead by the orthopaedic oncology nurse practitioner (JMK); the treating surgeon (BJM) was not present during any of the groups. The study was submitted and approved by the University of Iowa Institutional Review Board prior to initiation of patient contact. Funding for the study was provided by the University of Iowa Sarcoma Multidisciplinary Oncology Group.

Participants

A purposive sample of English speaking potential participants ≥18 years old was identified from all sarcoma surgeries performed by a single Orthopaedic Oncology surgeon (BJM) between 2011 and 2015 at the University of Iowa Hospitals and Clinics. Participants were offered an incentive of $50 for participation in a session. All sarcoma histologic subtypes, grade, and stage were included, except for atypical lipomatous tumors and dermatofibrosarcoma protuberans, as treatment of these very low-grade tumors are different than the majority of sarcoma. Two hundred seventeen potential participants were identified, and informational letters and response cards were sent via mail, with follow-up phone calls to confirm interest and select workable dates. Three focus groups, made up of 4, 9, and 7 participants (20 total), were completed in February 2016 (Table 1).

Table I.

Demographic breakdown of participants

Characteristic	Number
Age (years)
Average (range)	51 (22-79)
Sex
Male	11
Female	9
Location
Upper extremity	4
Lower	15
Pelvis	1
Type
Bone	7
Soft	13
Histology
Undifferentiated pleomorphic sarcoma	4
Myxofibrosarcoma	4
Chondrosarcoma	5
Osteosarcoma	2
Leiomyosarcoma	2
Malignant peripheral nerve sheath tumor	1
Fibromyxosarcoma	1
Synovial sarcoma	1
Grade
1	7
2	2
3	11
Stage
Localized	17
Metastatic	3
Adjuvant Treatment
Chemotherapy	4
Preoperative radiation	6
None	10
Surgery
Resection only	16
Curettage and cementation	1
Distal femur prosthesis	2
Acetabular reconstruction	1
Time Since Surgery (years)
Average (range)	2.2 (0.6-4.8)

Data Collection

Focus groups were held in clinic conference rooms. No additional family members or friends joined the participants. The sessions were lead by a moderator with 2-3 note takers. Note takers were responsible for recording patient behaviors and reactions that would not be gleaned from review of the transcripts. We obtained informed consent from each participant prior to the beginning of the session. The sessions were audio and video recorded for transcription purposes. A discussion guide (Appendix A) developed by the research team was used by the moderator to ensure research aims were being met during the discussion. The moderator did not go through each question verbatim, rather the conversation occurred organically among participants and the discussion guide was utilized as needed if discussion slowed. Each focus group had approximately 75 continuous minutes of dialogue. At the conclusion of the study, participants were given a list of psychosocial resources and thanked for their participation.

Data Analysis

After each focus group, the moderator and note takers held a debriefing session. A standard debriefing was done for each focus group to discuss emerging themes, contradictions to previous focus group comments, unclear or confusing remarks, individual behaviors or interactions that would not be easily identified on transcription, and any clarifications that should be made for future groups. This was an important part of the initial data analysis in order to continually evolve the research questions and techniques utilized as part of the iterative nature of qualitative research.² Transcripts were generated by a third party, the University of Iowa Social Science Resource Center (SSRC). They were typed verbatim initially then edited to remove superfluous remarks. Transcripts were not returned to patients for comment or correction. The transcripts were analyzed by the research team to identify common themes via multiple readings of the transcripts and then a scissor-and-sort technique was used to attribute participant comments to the identified themes. Observations not inherently obvious, but potentially important, from the language of the transcripts (such as clearly emotional topics) were noted on transcripts. The SSRC staff independently reviewed the transcripts and provided a summary of findings, which was used to assist in validation of the themes identified by the primary research team. The SSRC highlighted comparable themes to that of the research team. The Consolidated criteria for reporting qualitative studies (COREQ) checklist was used as a framework to assess the rigor of this qualitative approach.¹²

Results

Four categories of findings emerged during data analysis: information about diagnosis and treatment, relationship with the care team, social support, and restoration to “normal.” We created a summary of direct patient quotations (Table 2) and the primary discussion points (Table 3).

Table II.

Lessons and advice from analysis of focus groups

Theme	Lessons	Advice
Information at diagnosis	Information seeking behavior is a highly individualized trait Although the internet was utilized, the oncology provider was the primary source of information Younger patients were more likely to use internet-based resources and social media to supplement information they received about diagnosis Genetic component and familial risk was a common concern Functional limitations were more significant than anticipated	Desire for survival statistics was variable with many patients expressing a desire not to know The need for specific information (survival estimates, housing options during treatment, financial support, coping strategies) should be revisited at different time points during treatment and recovery
Relationship with care team	Trust in oncology providers is very important – many had lost faith due to the perceived delays in diagnosis Access to care team is important and was suboptimal for those located remotely from the treating institution Patients were surprised and frustrated that their primary care providers did not know the details of their diagnosis and treatment	Local access (outreach clinics)would be beneficial Better care coordination between specialists and general practitioners is desired – a treatment summary and survivorship plan would help
Social support	Family and friends provided most of the support (physical care and logistics) but can also be a source of stress and anxiety Discussion with others with similar challenges was helpful – did not necessarily have to be other sarcoma patients Social media was a good source of emotional/psychological support	A social worker to help navigate the logistics of care and financial concerns would be helpful A social media forum of sarcoma patients (e.g. a closed Facebook page) would provide a means for social support
Restoration to “normal”	Was the most emotional and passionate topic Frustration that physical therapy was not focused on reaching a pre-treatment level of activity Expectations for recovery differed by individual, with some expecting attaining a high level of function Managing psychological recovery can be more challenging than the physical limitations	Recovery should be expected to be slow, with “good” and “bad” days Physical therapy is important and should be tailored to the individual A distress questionnaire may help identify those in need of additional psychological services

Table III.

Verbatim quotations from focus group patients

Information about Diagnosis and Treatment

I think in our society, instinctively you always go to the internet. I mean that’s what we do and whether you believe everything that you read or you don’t. I went and there was hardly anything on it and what I found I didn’t like.

Yeah, I wouldn’t say that I research but like I participate in Sarcoma Alliance Facebook group and another sarcoma support group on Facebook

I think too much information can be more damage. Cause if you start reading on it goes from the different things into the different areas and it works on you. So I just quit looking on the computer about the sarcoma and the different stuff and I think I’ve done pretty well, you know, since I quit and because the mind can play really tricks on you.

Well, my thought was where else have I got it, you know?

I was in high school, I was diagnosed at seventeen. So they pulled me out of school and told me and it was just this slow two weeks of, I have no idea what’s going on, but I didn’t get a lot of information on survivorship, which I really appreciated. Until just this last year or so Dr. Miller started talking to me about survivorship rates at this point in my treatment and I find that helpful because they sound good. I think if they sounded bad I wouldn’t want them, so.

I don’t recall hearing that and I don’t think I would have wanted to know. I just wanted to know what I was up against, what the plan was and… how to get through it.

As for survivor rates I don’t remember being told, I’m sure I was at some point in time but it wasn’t something that was a priority for me at that point in time I just wanted it fixed so I could get back to my life… Either way for me, I don’t think it necessarily hindered, for me, because they’re just rates and I and I can be either one side or the other so.

I think that was one of the first questions I asked. Is if the kids would be able-you know, catching this and Dr. Miller right away said “no.”

Maybe at the time that they’re sending those brochures home, you’re just SO overwhelmed with all the information.

You can do some FAQ’s and ask questions at the various stages, diagnosis, prognosis, surgery, options or recovery expectations.

Relationship with Care Team

Well, they’re the resident experts.

I kind of rely on physicians and the oncologists to give me information.

I think Dr. Miller gave me a lot of peace in mind. He was very helpful in that regard. He was honest and direct.

It’s like its one less thing to worry about because you know. Somebody’s looking out for ya that knows what they’re doing.

I had post-operative complications. I had an infection and some other stuff but in my case it was the problem was that I couldn’t just “pop in” and see Dr. Miller since I was working and Iowa City is two hours away and all that.

Mercy and Unity Point have support groups and things available but they’re mostly promoted to their customers. And since we go to the University of Iowa, we’re left high and dry. That’s how I felt.

I had seen my physician fairly recently I guess and …she thought everything was done up in Iowa City and I did have some abnormal blood work too. So it was kinda like oh well (laughs) (whispers: I guess I) that was odd I thought because there was not that communication there. She just thought everything had been done.

Social Support

It’s not good enough just to offer it at the outset when somebody hasn’t been going through all of this, but to be aware of, maybe how they’re feeling, responding to all of this.

I have a real good friend that’s a breast cancer survivor and had different paths of treatment and different hospitals, but the thing that she really helped me with is just trying to explain the weird feelings and I’m not like a big emotional type, I mean so I felt like a wreck cause I felt like I can’t think straight I can’t sleep I don’t know, this isn’t me. So talking to her just even getting “those things are expected, you know don’t feel like your falling apart or you’re weird because you feel this way all of the sudden” but so that was a big help for me.

I’m more of a high touch person than a high tech so it would have been nice if there was something in the hospital where people my age.

You need family support. That’s the biggest thing right there.

Family is a big deal too. I got eight. There are eight in our family. I got six sisters and one brother and I came down for radiation everyday five days a week and I had a different driver every day, which was remarkable.

I stopped bringing my family with me to my appointments, started bringing friends, instead of my family because my mom really winds me up. I think she would-she worried MORE and I would have more anxiety leaving there than I would with a friend.

Restoration to “Normal”

I didn’t expect it to be as long, kind of thought maybe it would be a quicker recovery and I still have some complications that are frustrating to me even a year and a half later but you guys have reassured me and it was more of a mental thing.

I went to physical therapy after my surgery and that was a big help to get me back to moving again.

I think it [physical therapy] was extremely important even though I could walk fairly well it was still important for it to make- to get that function back that I wanted.

I think that most of the time it was like let’s just get me back to functioning even like with my lungs get back to the point where you can walk to the mailbox and still have your air and I’m like NO I want to run I want to get it back to teaching (Ta-Kwon-Doe) and being really physical.

To get physically back and I don’t know that I realized the complications of some of the nerve damage, and scar tissue damage and things like that that I have had to do extra kind of alternative massage therapy and things like that to kind of break down some of that scar tissue and extra exercises to build up certain muscles.

Well I’d say attitude is a big thing. I mean keep a positive attitude.

I know I’ll never be back to where I was, I know I will never be back to what I was but as best as I can be now and as happy as I can be now you know.

You want to be back to normal as fast as possible and it’s not that way. I think you know you gotta find your new normal. You know it’s not, you’re not going to be like you were before but you’re going to be a new normal. So you find a good goal where you can cope and you go on with life.

It’s not just the physical, it’s the emotional and the long term.

Information about Diagnosis and Treatment

As with other cancer diagnoses, health informationseeking behavior was identified as a highly individualized trait among sarcoma patients, with some displaying an active information-seeking style and others more moderately active or passive. The sarcoma medical team was identified by many individuals as the primary source of information about their cancer and treatment. The Internet was used differently among participants, with younger patients unsurprisingly demonstrating a greater predilection toward virtual resources. Some utilized the Internet to research their diagnosis initially, but felt dissatisfied or frightened by the information they found or felt they could not find information that was applicable to them. Others identified the Internet as a way to seek support in dealing with their diagnosis or to establish camaraderie with other sarcoma survivors. Open and closed Facebook groups were specifically mentioned as a way to speak to other sarcoma survivors and seek support. As time passed after diagnosis, several noted that their need for continued information regarding the diagnosis decreased, but still highlighted the psychological and emotional impact of continued information seeking.

The desire to know survival statistics varied among participants, with some expressing their desire to have a general understanding of the extent of their disease at diagnosis. In contrast, others did not seek this information or only wanted to know if the statistics were optimistic. Many participants expressed concern with whether or not there was a hereditary component to sarcoma. Others highlighted the initial shock and feeling overwhelmed at the time of diagnosis and provided suggestions for relaying information to patients at various time points in their care.

Relationship with the Care Team

Establishing a trusting relationship with the sarcoma team was important to many participants. The sarcoma team provided information as well as reassurance during diagnosis, throughout treatment, and beyond. Many expressed a loss of trust in local healthcare providers due to delays in diagnosis, and reestablishing confidence in the medical system was important for many. It was spontaneously highlighted numerous times that the lack of geographic proximity to the treatment team proved frustrating and isolating. This is a real and continuing challenge as much sarcoma treatment is regionalized and consolidated in tertiary referral centers. This regionalization guarantees that patients are treated with appropriate and modern interventions, but may have some negative consequences regarding access to treating specialists. Practical aspects of coordination of care and fragmentation of the medical system were highlighted as areas of frustration. Participants recognized lack of communication regarding the surveillance plan after treatment and coordination of tests, imaging, lab, and records transfer as significant stressors and areas of potential improvement.

Social Support

Several comments highlighted the ongoing psychosocial and emotional support that is needed throughout sarcoma treatment and survivorship and numerous participants provided suggestions that were helpful for them. These included speaking with an oncology social worker, connecting with other sarcoma survivors via Facebook, and speaking with other non-sarcoma cancer survivors. Although the purpose of the focus groups was not meant to be a support group, some people expressed their preference for in-person discussions rather than virtual interaction. Many participants highlighted the important role of family, particularly as caregivers and advocates. Some noted that family, despite virtuous intentions, could at times increase anxiety or stress.

Restoration to “normal”

The topic of returning to “normal” was the most passionate topic discussed in the focus groups. Many comments were associated with emotionally charged language and non-verbal evidence of emotion, such as crying, increased tone and volume, and increased participation by group members. Many participants expressed the long physical and emotional recovery process after sarcoma surgery. The importance of physical therapy was highlighted by many as a way to optimize recovery after surgery. The expectations for recovery varied among participants’ pre-diagnosis level of functioning and goals despite the reality of their limitations due to surgery. This appears consistent with a previous study that demonstrated patients expecting a difficult recovery and those with uncertain expectations had worse functional outcomes than patients anticipating an easy recovery.1 With some participants a discrepancy seemed to exist between the surgeon’s satisfaction with function and the patient’s satisfaction with function. Some made comments that highlighted the reality of a “new normal” after sarcoma treatment and the challenges associated with coping and moving on after the diagnosis. It was noted in a previous systematic review of sarcoma survivors that being optimistic was associated with good functional outcomes11 and in a study of long-term sarcoma survivors, 94% of participants felt that the cancer had made them a “better person.”¹³ Several comments from the focus group emphasized remaining positive despite the diagnosis and unanticipated adverse events during treatment and recovery.

Conclusion

Several implications for orthopedic oncology practice emerge from this work. Patients with orthopedic tumors benefit from a team approach to their care. Recognizing that specialists are the predominant source of information regarding diagnosis and treatment is important for the care team to keep in mind when counseling patients. Patient education should be individualized and based on the patient’s desire for information and preferred method of receiving it. Additionally, various topics should be revisited and multiple times throughout active treatment and survivorship. The care team should strive for seamless coordination of care among sub-specialties and keep the patient’s primary care provider apprised of their patient’s treatment and follow-up plan. Counseling patients regarding recovery expectations and re-entry into life after sarcoma is important for patients. Providing psychosocial support or making referrals to aid in addressing these issues also proved to be an important aspect of care for sarcoma survivors.

Appendix A. Discussion Guide Questions

1. What did you want to hear most about when you were 1st diagnosed with sarcoma?

   Probes: Did you want to hear survival statistics?

   Were you able to think long-term (i.e. life after cancer)?

2. When you were first diagnosed, were you able to get the information you needed?

   If not, why not? What got in the way of your getting that information?

   Probes: Didn’t know enough to ask questions?

   Didn’t know where to look?

   Too stressful to process (i.e. cancer diagnosis was too overwhelming to think about any specific details)?

3. Where did you turn to for information regarding sarcoma?

4. Have you turned to different sources for information as your needs have changed?

5. Who has been most helpful in dealing with your concerns about sarcoma? Least helpful?

6. Did the kind of information you needed change over time? How?

7. Is there anything you know now that you wish you would have known when you were first diagnosed? Any advice you would give to yourself?

8. We’d like you to think about the physical side of having sarcoma. Are there things that have been particularly helpful to you in dealing with physical issues such as managing pain, changes in the way your body functions, or changes in your appearance? We are not asking that you go into detail about the physical issues themselves, but more about what was helpful in dealing with them.

   Are there things you didn’t get that would’ve been helpful?

   Probes: Managing pain, change in the way your body functions, disability, appetite/nutrition, living with chronic illness

9. Looking back, do you feel you understood how surgery or treatment of your sarcoma would affect your daily function? If not, is there anything that you feel would’ve been helpful in understanding this?

   Probes: Talk to other survivors, diagrams/pictures/handouts

10. What do you think is the biggest gap in the programs, services, or supports for sarcoma survivors? We would like to hear from everyone on this question.

11. If you were to talk to other people with sarcoma, what advice (based on your own experience) would you give?

12. What is the most important message you would want to send to sarcoma doctors?