Skip to main content
NIHPA Author Manuscripts logoLink to NIHPA Author Manuscripts
. Author manuscript; available in PMC: 2024 Jul 1.
Published in final edited form as: Rehabil Oncol. 2023 Apr 12;41(3):139–148. doi: 10.1097/01.reo.0000000000000341

Preferences on Delivery of Cancer Rehabilitation Services for Cancer-Related Disability Among Older Individuals Surviving Breast Cancer: A Qualitative Study

Rachelle Brick a, Kathleen Doyle Lyons b, Catherine Bender c, Rachel Eilers a, Robert Ferguson d, Mackenzi Pergolotti e, Pamela Toto a, Elizabeth Skidmore a, Natalie E Leland a
PMCID: PMC10574708  NIHMSID: NIHMS1879768  PMID: 37841364

Abstract

Background:

Older individuals surviving breast cancer often encounter cancer-related disability as a short-term or long-term effect of cancer and related treatment. Cancer rehabilitation interventions have the potential to prevent, mitigate, or remediate cancer-related disability. However, use of these services remains limited. Understanding the priorities and perspectives of older individuals surviving breast cancer is key to developing effective and implementable cancer rehabilitation interventions. This qualitative descriptive study examined individuals’ preferred and valued methods of cancer rehabilitation intervention delivery.

Methods:

Using a qualitative descriptive design, older individuals surviving breast cancer (n=14) completed a single telephone-based semi-structure interview. Interviews explored survivors’ preferences for cancer rehabilitation service delivery. Interview transcriptions were thematically analyzed. Open codes were inductively generated and reviewed for agreement by an independent reviewer. The codes were deductively organized. Differences were resolved through consensus meetings.

Results:

Findings revealed preferred intervention delivery characteristics for intervention setting, mode of delivery, format, and timing. Participants predominantly preferred interventions delivered in community-based settings, with both in-person and remote components. Participants also appeared to value one-on-one interventions and those delivered post-treatment. Survivors’ overarching preferences were based on desire for patient-centric care, one-on-one therapist time, complex medical schedules, and financial concerns.

Discussion:

Study findings provide guidance on the modification of existing and creation of new cancer rehabilitation interventions addressing cancer-related disability in older individuals surviving breast cancer. Adoption of stakeholder-driven intervention delivery characteristics may improve value and acceptability of interventions. Future intervention research should incorporate and test these characteristics to ensure their effectiveness in real-world settings.

Keywords: cancer rehabilitation, breast cancer, older adult, qualitative

Introduction

Older individuals surviving breast cancer often experience cancer-related disability.1,2 Up to 60% of this population will experience difficulty and/or dissatisfaction performing instrumental activities of daily living (e.g., money management, shopping, meal preparation)2,3 or basic self-care tasks (e.g., bathing, dressing, eating).4,5 Difficulty participating in meaningful roles and routines may result from cancer or treatment-related impairments such as cancer-related cognitive impairment, frailty, fatigue, pain, depression, and/or peripheral neuropathy.2,6 Cancer-related disability can evolve and be compounded by normative aging changes7 to further affect health-related quality of life8 and influence survival.9

There are a variety of evidence-based cancer rehabilitation interventions that reduce cancer-related disability.10,11 Despite availability12 and survivors’ desire to receive services for cancer-related disability,13 few older individuals surviving breast cancer access, or engage in cancer rehabilitation interventions. A recent thematic analysis found that access to rehabilitation services in this population may be affected by factors such as provider interactions, social support, and emerging awareness of disability.14 However, findings from this work did not identify how various elements of intervention or service delivery influence utilization of services.14

Limited uptake of cancer rehabilitation services may be due to intervention delivery characteristics not aligning with the preferences of this population.15,16 Intervention delivery characteristics represent where (setting), how (mode of delivery, format), and when (timing) an intervention is administered. Furthermore, existing intervention delivery may not account for the unique needs of older survivors such as multimorbidity, caregiver support, transportation barriers, and/or financial limitations. Representatives from expert interest groups17 and funding agencies15,18,19 recommend designing interventions with the input of stakeholders to create more user-centered, implementable, and sustainable interventions. Engaging survivors in a systematic manner in rehabilitation intervention development can more accurately reflect needs and priorities of survivors in current models of oncology care.20

The purpose of this study was to identify older individuals surviving breast cancer perspectives on preferred intervention delivery characteristics of cancer rehabilitation interventions. We focused on recruiting older individuals surviving breast cancer with cancer-related disability as this population would be most likely to qualify for and access cancer rehabilitation services. Specifically, we sought to explore older individuals surviving breast cancers’ priorities and preferences for intervention setting, mode of delivery, format, and timing. These insights can provide recommendations for clinicians and researchers who are developing, modifying, or implementing existing interventions to address survivorship needs of this population.

Methods

Study Design

This research used a qualitative descriptive design21,22 to explore lived experiences of cancer-related disability, cancer rehabilitation, and opportunities for intervention in older individuals surviving breast cancer. All methods were approved by the University of Pittsburgh Institutional Review Board (Protocol: STUDY20040065). Methodological considerations and reporting are based on the Consolidated Criteria for Reporting Qualitative Research (COREQ-32) checklist.23

Recruitment and Sampling

Recruitment took place between June 2020 and August 2020. We sought to include at least 12 participants as previous methodological reviews suggest 92% of all themes are captured after analyzing this number of semi-structured interviews.24 Older individuals surviving breast cancer were recruited using a convenience sampling technique25 via university-based registries (Clinical and Translational Science Institute Pitt+Me Registry; Pittsburgh Pepper Center), previous breast cancer research studies at our institution, community support groups, and geriatric oncology clinics. Inclusion criteria were: 1) ≥ 65 years old; 2) diagnosis of breast cancer (Stages Ia – IIIc); 3) community-dwelling; 4) self-reported cancer-related disability associated with self-care or daily activities; and 5) completed primary cancer treatment (not including maintenance therapies) between 6 months and 5 years previously at the time of enrollment. Self-reported cancer-related disability was defined as responding “yes” to the following question: Do you experience changes in your day-to-day activity or functioning as a result of your cancer experience? After recruiting ten participants, demographic data were analyzed for race and age characteristics. To capture perspectives more reflective of the existing composition of this population in the United States,26 the remaining four participants were selected through quota sampling.27 Survivors who met eligibility criteria were contacted by the principal investigator to complete informed consent.

Data Collection

Data collection took place between June 2020 and September 2020 and was conducted remotely to improve geographic reach, promote participant safety due to the COVID-19 pandemic, limit transportation barriers, and create a comfortable setting to discuss personal experiences. Following informed consent, participants completed an online questionnaire to document demographic information, clinical characteristics, and history of cancer rehabilitation utilization. The questionnaire identified which of three semi-structured interview guides (Supplemental Digital Content) would be administered. Separate guides ensured that the wording of interview prompts was tailored to past cancer rehabilitation utilization experience. Interview Guide 1 was tailored to explore experiences of participants who had previously experienced cancer rehabilitation services. Interview Guide 2 reflected experiences of participants who had not received cancer rehabilitation services but were interested in pursuing the services. Lastly, Interview Guide 3 explored the experiences of individuals who had not experienced cancer rehabilitation services and did not desire to participate in them. All guides facilitated conversation about preferred indications for cancer rehabilitation (for whom), timing (when), and models of delivery (where, how). For our current analysis, we did not analyze reasons participants were or were not interested in receiving cancer rehabilitation services as this has been explored in our previous work [Brick, Lyons, Bender, Eilers, et al., 2022]. Interviews were pilot-tested for clarity, interview length, and comprehensiveness prior to data collection with older individuals with and without breast cancer diagnoses as well as older adults who previously accessed rehabilitation services.28

Telephone-based interviews were scheduled for a time and date convenient to the participant. There were no additional individuals present beside the participant and interviewer during data collection. Interviews were conducted by the principal investigator (RB) who is a female, licensed occupational therapist with four years’ clinical and oncology research experience. At the time of the research study, the principal investigator was a full-time PhD Candidate. Participants were aware of the interviewer’s credentials and research interests, as well as that this study was a portion of the researcher’s doctoral dissertation. Two participants had previous relationships with the principal investigator: 1) one had attended a support group event where the principal investigator was a speaker; and 2), one participant was a family friend of the principal investigator. Memos were written following the interviews to note reflections about the collected data and assumptions regarding participants’ experiences with cancer rehabilitation. Participants were compensated $30 for their participation. Interviews were audio-recorded and transcribed verbatim by a trained occupational therapy student (RE). Interviews were de-identified and proofread against the audiotape using the three-pass-per-tape policy 29.

Data Analysis

Demographic data were analyzed using descriptive statistics using SPSS Statistics (Version 24) (Chicago, IL, United States). Data management and analysis were conducted using NVivo QSR Software (Version 12) [released March 2020]. The principal investigator (RB) read each transcript and related memo to have a broader sense of the interview. Key themes were identified using a thematic analytic approach.21,22 Open codes were inductively generated by the principal investigator followed by preliminary review by an independent reviewer (KDL) with expertise in oncology and qualitative methods. The codes were deductively organized under the following dimensions of intervention delivery: (1) setting, (2) mode of delivery, (3) format, and (4) timing. The open codes underwent pattern coding (RB, KDL) to further develop themes until consensus was achieved (RB, KDL, ES, NEL). Dependability and credibility were maintained through an audit trail of codebooks and meeting minutes. Data interpretation, data saturation, and self-reflection were reviewed at weekly consensus meetings to consider how research process and personal biases may have influenced interpretation of the findings.30

Results

Participants

Thirty-four potential participants completed screening; reasons for ineligibility were young age, time since primary treatment completion, lack of cancer-related disability, or limited interest in the study.14 Fourteen individuals provided informed consent (see Table A) and completed the demographic questionnaire and interview. Table A details participant characteristics. Telephone-based interviews ranged from 24 – 48 minutes and took place in one sitting.

Table A.

Participant Characteristic

ID Age Time Since Breast Cancer Diagnosis (months) Breast Cancer
Stage
Race/Ethnicity Education State of Residencea Urbanicity Treatment(s) Receivedb Medications Received Cancer Rehabilitation Services?c

1 68 28 Ia White, Non-Hispanic High School PA Rural S, R, H 7 – 9 Yes; PT
2 77 18 IIIa White, Non-Hispanic High School FL Suburban S, C, R, H 10 + Yes; OT; PT
3 65 20 Ib White, Non-Hispanic Doctorate WI Rural S, R, H 4 – 6 No
4 76 32 IIa White, Non-Hispanic Masters FL Suburban S, R, H 10+ No
5 69 54 IIIc White, Non-Hispanic High School PA Suburban S, C, R, H 4 – 6 Yes; OT; SLP
6 77 49 IIIa White, Non-Hispanic Bachelors WI Suburban S, R, H 7 – 9 Yes, PT
7 66 62 Ia White, Non-Hispanic Masters PA Urban S, R, H 10+ No
8 69 22 Ia White, Non-Hispanic Doctorate PA Urban S, R, I, H 4 – 6 No
9 68 46 IIa Black, Non-Hispanic Bachelors PA Suburban S, C, R, H 4 – 6 No
10 67 42 Ia White, Non-Hispanic Associates PA Suburban S, R, H 7 – 9 No
11 77 14 Ia Asian Doctorate PA Suburban S, H 7 – 9 No
12 76 73 IIa White, Non-Hispanic Vocational PA Suburban S, C, R, H 4 – 6 Yes, PT
13 68 38 Ia White, Non-Hispanic Associates PA Suburban S, R, H 4 – 6 No
14 76 13 Ib White, Non-Hispanic Bachelors PA Suburban I, H 7 – 9 No
a

State of Residence Abbreviations [PA=Pennsylvania; FL=Florida; WI=Wisconsin]

b

Treatment Abbreviations [C = Chemotherapy; R=Radiation Therapy; H= Hormonal Therapy; I=Immunotherapy; S=Surgery]

c

Cancer Rehabilitation Services Abbreviations [PT= physical therapy; OT=occupational therapy; SLP=speech language pathology]

All participants reported previous exposure to rehabilitation services and interventions, whereas only five participants (36%) received formal cancer rehabilitation. Survivors described varying preferences for intervention settings (location), mode of delivery (in-person, virtual, hybrid), formats (clinician-patient interaction), and timing (point in time when an intervention occurs during the cancer care continuum). Advantages and disadvantages of the delivery characteristics are summarized in Table B.

Table B.

Summary of intervention delivery characteristic advantages and disadvantages

Delivery Characteristic Advantages Disadvantages

Setting Outpatient or Community-Based – Familiar locations
– Available parking
– Easy to access
– Unlink from illness narrative
– Trust and inclusion
– Specialized equipment
– Greater risk of exposure to COVID-19

Home-based – Limit transportation barriers – Perceived as only for ill
– Perceived as for home-bound individuals only

Mode of Delivery In-person – Flexible scheduling
– Therapist attention
– Recognizable reimbursement structures
– Thorough care and attention
– Greater risk of exposure to COVID-19

Virtual – Safe
– Flexible and accessible scheduling
– More efficient (no travel time)
– Technology troubleshooting
– Setting up video platforms
– Perceived as receiving less thorough care or provider attention

Hybrid – Limit transportation barriers
– Promoted provider communication and contact
– None reported

Format One-on-one – Perceived greatest therapist attention – Not always guaranteed in real-world settings (concurrent care models)
– Perceived as more expensive

Group-based – Perceived cost-saving method
– Camaraderie
– Can include individuals of difference cancer types
– Less individualization of care
– Discomfort sharing personal concerns
– Group member differences (e.g., age)

Timing Pre-treatment – None reported – Limited knowledge of prehabilitation models
– Limited knowledge of prevention aspects of care

During treatment – Illness-recovery mindset – Complex medical schedules
– Perceived as preventing access to rehabilitation services post-treatment

Post-treatment – Distancing from illness identity
– Fewer conflicting healthcare activities
– More flexible scheduling
– Change to self-manage cancer-related disability
– Prolonging illness narrative

Intervention Delivery

Setting

Older individuals surviving breast cancer discussed advantages and disadvantages of receiving cancer rehabilitation interventions within outpatient clinics, community centers, patient home or hospital settings. All participants were supportive of community-based settings or outpatient clinics. Advantages of these settings included familiar locations, available parking, and were easy to access. Survivors were also motivated by availability of specialized equipment and ease of access to clinical experts.

“Inside the clinic, they had like different machines that you could, you know, like you could ride a bike and you could leg press and things like that. Where obviously I didn’t have anything [in my home].” [BC2]

Older individuals surviving breast cancer suggested that outpatient clinics portrayed health and a strong focus on recovery, whereas hospital or cancer centers incited fear of cancer recurrence or mortality.

“Probably more in the community center, like a physical therapy clinic. But not in a hospital. I think it’s important to have the appearance of a healthy environment and not be a place where you might dwell on your ailment.” [BC14]

While the “unlink from healthcare” [BC12] was an advantage of community-based settings, the primary disadvantage reported was greater risk of exposure to COVID-19. Despite uncertainty in the pandemic, one older individual surviving breast cancer shared that community-settings help to foster trust and inclusion of survivor populations:

“I went to the YMCA…[the Livestrong Group] that was wasn’t actually therapy but well, I guess it was tell you the truth. It was therapy. I didn’t think of it as therapy. I just thought of it as a program to get, you know, survivors there together to talk and, you know, get stronger…” [BC7]

Of note, interest in home-based interventions was infrequent. Three individuals shared that this setting would be helpful especially for older adults that could not drive. Another individual reported that she felt her goals could not be accomplished within the home since she did not own specialized equipment. Equally, home-based interventions were perceived as therapy for those who were severely ill or unable to leave their homes.

“And it was, you know, great that [the home health PT] came because…I couldn’t get out to do the exercises…I did prefer going out rather than having them come…I had to do more things, there were more things that needed to be done.” [BC6]

“Well like home therapy, this is probably a little crazy, but I associate that with, oh you can’t get out so you better have someone come to the home.” [BC3]

Mode of Delivery

Participants’ preferences varied in terms of intervention administration (in-person only, virtual only, or hybrid). Advantages of in-person delivery included flexible scheduling, therapist attention, and recognizable reimbursement structures. Older individuals surviving breast cancer shared that in-person interventions would provide them thorough care and attention. However, some were hesitant about returning to in-person services due to the COVID-19 pandemic.

“I really don’t want to leave my house for anything. I’m very cautious [due to COVID-19]…If maybe there’s a way to have a visit over the internet, with a therapist who can tell me to do this or that in my house that would be wonderful.” [BC10]

Interventions delivered virtually were a common topic across survivor interviews. Almost every survivor had participated in one telehealth appointment. Participants positively described virtual interventions as safe, accessible, and more efficient to complete. Furthermore, participants did not need to factor in travel time to a clinic and could fit appointments into their schedule more readily. Disadvantages of virtual programs were reported as challenging technology set-up and diminished patient-provider rapport.

There was a consensus for the use of hybrid formats that integrates both in-person and virtual sessions to evaluate, progress, and boost rehabilitation outcomes. Participants thought this format reduced burden associated with transportation and promoted contact and communication with a therapist.

“Maybe start with two [sessions] where I was coming in one on one. And then maybe every third visit would be virtual…gradually, it could get to be more virtual. You know, we’re going to do virtual for two weeks and see how you make out with that and then come in, and then we’ll try you out on some machines specific guidelines.” [BC13]

Format

Older individuals surviving breast cancer reported mixed opinions on intervention format (e.g., one-on-one with a therapist; group-based). Working one-on-one with a clinician was prioritized by all participants. Many stated this format could allow for greatest attention from the therapist. However, two participants shared that the execution of one-on-one therapy is not always guaranteed in real-world settings. While both participants had been referred to outpatient cancer rehabilitation services, each felt they were not receiving personalized attention. Often, older individuals surviving breast cancer experienced concurrent therapy structures which they did not perceive as patient-centric care.

“The therapist would put me on the bike, keep me there for 20 minutes and then go take care of three other patients. And then come back and put me on something else and then go take care of three other patients. I really didn’t feel like I was getting any personalized attention at all.” [BC5]

One drawback to one-on-one services was that it was perceived as more expensive. Participants found it challenging to cover co-payments for frequent one-on-one sessions. One participant offered a solution to alternate one-on-one intervention sessions with group-based or community-based sessions as a cost-saving method:

“One-on-one would be my preference. But that’s difficult to expect that every week unless your insurance pays for it. So maybe, you know, one on one every other week, and then do group therapy the rest of the time if it reduces the cost.” [BC14]

Participants shared varying opinions of a group-based format. Advantages of group-based therapy included perceived lower cost and camaraderie. One older individual surviving breast cancer prioritized attendance in group-based yoga at the cancer wellness center to lower the financial burden.

“It was nice when I had the option of splitting the cost in half, getting two sessions for the price of one because they didn’t charge the full amount [as a group format].” [BC9]

Reported disadvantages of group-based interventions included less individualization of care and discomfort in a group setting. Participants reported that the composition and size of a group might influence the utility of the intervention. Participants acknowledged that the effectiveness of a group intervention would be highly dependent on peer match (e.g., peers’ age). For example, some participants shared they were not comfortable speaking with someone who is significantly younger than them:

“But, you know, in a therapy group. I tended to feel sorry, for all the younger people that were sick. And I really wouldn’t have focused that much on myself. And I found it, it was heartbreaking actually… I didn’t really want to be around her, or people like that. It was too hard for me. I found it sad.” [BC4]

In terms of group composition, participants were indifferent toward group interventions that had individuals of similar or varying cancer diagnoses and there was no feedback on differences in cancer staging in groups:

“… I don’t think that would make a difference to me. It’s cancer, you know, and I guess, if you have different medications, or chemo or radiation or whatever you have, it’s going to give you some side effects, my side effects might not be the same as someone else. But we’re all cancer survivors. So, and we’re just trying to improve our life. So I don’t think, I don’t think [diagnosis] would matter. I think it might be a little easier if it was all breast cancer in the group, but I don’t think I’d be upset about it being different types of cancer.” [BC13]

Timing

Older individuals surviving breast cancer preferred interventions to be delivered during or post-treatment. When prompted, few participants had heard of prehabilitation or knew of its clinical utility. Prehabilitation was shared as the use of interventions between the time of cancer diagnosis and the beginning of cancer-related treatments that aimed at improving a patient’s health to reduce the incidence and the severity of current and future impairments.31 Participants thought rehabilitation required a specific change in their health such as decreased ROM, pain, or disability rather than be used as prevention for “something I didn’t have [BC1].” For example, one individual shared:

“I guess because I didn’t have that [lymphedema] before. So therapy wouldn’t have done me any good. I mean unless it was like mental therapy.” [BC1]

Perspectives on rehabilitation intervention during active treatment were mixed. Half of interviewees were worried that completing rehabilitation during primary treatment may make their schedules too complex as well as prevent access to rehabilitation upon treatment completion. One participant felt that she was more motivated to complete rehabilitation during treatment as she had already adopted an “illness-recovery mindset.”

“As time goes on you sort of forget about it. I don’t go around every day saying I had cancer… whereas if you did it [during treatment] you might be more apt to stay on top of it.” [BC14]

Commonly, older individuals surviving breast cancer preferred interventions to be delivered post-treatment. An advantage of the post-treatment rehabilitation includes distancing from illness identities. One participant stated that during treatment, she was just focused on living and could not juggle other healthcare activities.

“Probably very soon after I was done. And probably the best time would not have been before, because you don’t want to be weighing all the side effects when you’re making a decision about going forward with care. But maybe some of the first follow ups.” [BC9]

Older individuals surviving breast cancer shared that post-treatment rehabilitation interventions allowed more flexible scheduling, fewer competing appointments, and a chance to independently manage sequelae. Likewise, survivors reported that much of their disability occurred post-treatment completion. Survivors described the gradual development of disability and that they did not perceive a need to address the changes until they saw how it affected resumption of roles and routines.

Discussion

There have been many calls-to-action15,16 to examine the preferences of older individuals surviving breast cancer regarding disability, intervention development, and care delivery. The findings of this qualitative study highlight important stakeholder perspectives regarding future rehabilitation intervention development and refinement in terms of (1) setting; (2) mode of delivery; (3) format; and (4) timing. Feedback from survivors emphasized overarching preferences that emphasized patient-centric care, one-on-one therapist time, flexibility of appointment scheduling, and financial concerns.

Outpatient and community-based settings represented health and recovery. Interventions delivered within these settings may improve attendance as they address survivors’ priorities of convenience, familiarity of location, and transportation barriers. Pergolotti and colleagues have begun to study the effects of outpatient rehabilitation interventions on cancer-related disability in older cancer survivors.32,33 While their results demonstrated prevention of additional decline (e.g., grip strength, walking speed) and significant improvements in health-related quality of life, the authors noted that patient-level barriers of appointment scheduling and transportation persist. Since our findings supported that this population has concerns about medical scheduling, additional investigation of patient- and organizational-level factors that improve access to interventions in this setting is warranted.

Our sample revealed mixed preferences for mode of delivery. Older individuals surviving breast cancer reported less confidence to attend in-person services due to the COVID-19 pandemic. However, it appeared that delivery of fully virtual sessions did not meet survivors’ adequacy of care standards. A hybrid approach to future rehabilitation interventions may allow for the therapist and patient to work through challenges within the home environment that may not previously have been addressed in a traditional in-person rehabilitation model. Furthermore, rehabilitation scientists and clinicians must stay abreast of regulations regarding financial incentives and reimbursement associated with virtual interventions.34 Although virtual and hybrid cancer rehabilitation interventions show promise for reduction in cancer-related disability,35 the sustainability of such models will be determined by internet access, availability of smart electronics, and sufficient technology literacy and support.34,36 Future work will need to consider how hybrid delivery influences access and delivery for communities of lower socioeconomic status, rurality and limited education. Additional exploration of the clinician-patient connection and patient experience may also uncover effective and preferred models of care.

Regarding format, older individuals surviving breast cancer prioritized use of one-on-one interventions if they were covered by insurance and easy to schedule. However, one-on-one attention may not be feasible for rehabilitation providers given productivity standards and long wait lists for clinic services. Future work emphasizing one-on-one care delivery should include implementation measures to better understand their feasibility. Intervention researchers might consider incorporating process evaluation methods to better understand multilevel facilitators and barriers that enhance one-on-one delivery.

Participants reported mixed preferences regarding group-based interventions. Kokts-Porietis and colleagues37 identified that behavior change in breast cancer survivors is largely attained with consistent social support. Social support or group-based interventions add potential complexity to survivors’ preferences for virtual or hybrid intervention delivery. Future work is needed to understand the most effective ways to incorporate peer support within virtual or hybrid group-based sessions.37 Additional research might evaluate how characteristics of group participants influence change in disability, group dynamics, and sustainability in real-world settings.

Lastly, older individuals surviving breast cancers’ prioritized interventions that were during- or post-treatment. Cancer rehabilitation services can be applied across the cancer care continuum to reflect two of the National Academy of Medicine’s (formerly Institute of Medicine) pillars of survivorship care: 1) Intervention for treatment consequences; and 2) Prevention of new late effects.38 Although the majority of participants preferred post-treatment intervention timing, lack of familiarity and education on the effectiveness of prehabilitation, or prevention, care may have influenced survivors’ preferences.39 Future research should seek to clarify communication about the value of prehabilitation and its benefit on outcomes40 to distinguish its importance. Should future interventions include a prehabilitation model, scientists should seek additional stakeholder input and consider guidance from the Multiphasic Prehabilitation Conceptual Framework.39 Although rehabilitation models recommend initiating rehabilitation at the time of disability diagnosis,41 there is limited evidence denoting optimal timing of rehabilitation services for older breast cancer survivors.42 Ongoing inclusion of stakeholder input will be critical to evaluate value of disability prevention, availability, access, transportation, and readiness for rehabilitation.43 Future work might consider use of other qualitative designs (E.g., content analysis) which can quantify and analyze the frequency, meanings and relationships among intervention delivery characteristics. Without considering how these environmental factors interact, intervention utilization may be limited.

Limitations

Our study presents important considerations for intervention development for older breast cancer survivors. The findings of the present study should be examined considering study limitations. Interviews took place during the beginning of the COVID-19 pandemic. Participants noted that their opinions were informed by evolving health policies. Despite this, our sample provided important foresight into delivery methods applicable to future healthcare delivery. Understanding the context of an intervention can significantly affect adoption of an intervention in real-world settings and formation of permanent telehealth care delivery structures.44

Our study attempted to recruit a diverse sample of older individuals surviving breast cancer to capture a variety of perspectives. Despite these efforts, we experienced challenges recruiting underrepresented individuals with a history of breast cancer and difficulty identifying underrepresented populations who met our age criterion. As a result, we only had one Black participant. Black women demonstrate accelerated markers of cellular aging compared to White counterparts due to lifelong stressors that differ from White women45 and are often diagnosed with more aggressive forms of breast cancer at an earlier age.46 Adoption of broader age or biological age inclusion criteria may be warranted to capture the important perspectives of this community. The need for equitable racial and ethnic perspectives is critical if we are to truly create stakeholder-valued cancer rehabilitation care.47

Our study focused on the preferences of older individuals surviving breast cancer who were post-treatment and without metastatic disease. Additional research should engage survivors undergoing active treatment, and/or with later stages of cancer to determine if results are similar. Likewise, the majority of participants had only experienced physical therapy interventions. To understand preferences for additional rehabilitation services (E.g., occupational therapy, exercise physiology, physiatry), additional research is warranted. Future work may consider utilizing a stratified purposeful sampling method to capture samples based on a priori characteristics such as race, ethnicity, and rehabilitation exposure. Finally, bias in the findings may exist as we were unable to return transcripts to or request feedback of findings from study participants prior to analysis.

Conclusion

Older individuals surviving breast cancer provided valuable insights and ideas about delivery of cancer rehabilitation interventions. Suggestions from study participants indicate unique intervention delivery needs that differ from many of existing cancer rehabilitation interventions. These findings can help to modify existing interventions and guide new intervention development addressing cancer-related disability in this population. Priorities of intervention development can be generalized across rehabilitation disciplines to increase their acceptability and potential adherence. Future intervention development should consider ongoing use of stakeholder input and consideration of health care policy structures to further refine intervention protocols and improve relevance of the intervention in current oncology care models.

Supplementary Material

SDC

Acknowledgements:

Recruitment efforts were supported by the Pittsburgh Pepper Center (P30AG024827), the Geriatric Oncology Research Infrastructure to Improve Clinical Care Grant (R33AG59206), and the Clinical and Translational Science Institute at the University of Pittsburgh (UL1TR001857).

Funding:

This work was supported in part by the University of Pittsburgh School of Health And Rehabilitation Sciences Research Development Fund (PI:Brick; Co-Author: Eilers) and in part by the Dr. Gary Kielhofner Doctoral Research Scholarship funded by the American Occupational Therapy Foundation (PI: Brick).

References

  • 1.Kah Poh L, Vivian L, Katey W, et al. Characteristics associated with functional changes during systemic cancer treatments: A systematic review focused on older adults. J Natl Compr Canc Netw 2021:1–8. DOI: 10.6004/jnccn.2020.7684. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 2.Brick R, Bender C, Skidmore E. Impact of cancer and cancer-related treatments on participation restrictions. Brit J Occup Ther 2020:0308022620923858. DOI: 10.1177/0308022620923858. [DOI] [Google Scholar]
  • 3.Lyons KD, Lambert LA, Balan S, Hegel MT, Bartels S. Changes in activity levels of older adult cancer survivors. OTJR-Occup Part Heal 2013;33(1):31–39. DOI: 10.3928/15394492-20120607-02. [DOI] [Google Scholar]
  • 4.Neo J, Fettes L, Gao W, Higginson IJ, Maddocks M. Disability in activities of daily living among adults with cancer: A systematic review and meta-analysis. Canc Treat Rev 2017;61:94–106. [DOI] [PubMed] [Google Scholar]
  • 5.Leach CR, Bellizzi KM, Hurria A, Reeve BB. Is it my cancer or am i just getting older?: Impact of cancer on age-related health conditions of older cancer survivors. Cancer 2016;122(12):1946–53. DOI: 10.1002/cncr.29914. [DOI] [PubMed] [Google Scholar]
  • 6.Biganzoli L, Battisti NML, Wildiers H, et al. Updated recommendations regarding the management of older patients with breast cancer: a joint paper from the European Society of Breast Cancer Specialists (EUSOMA) and the International Society of Geriatric Oncology (SIOG). Lancet Oncol 2021;22(7):e327–e340. DOI: 10.1016/S1470-2045(20)30741-5. [DOI] [PubMed] [Google Scholar]
  • 7.Mohile SG, Xian Y, Dale W, et al. Association of a cancer diagnosis with vulnerability and frailty in older Medicare beneficiaries. J Natl Cancer Inst 2009;101(17):1206–15. DOI: 10.1093/jnci/djp239. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 8.Pergolotti M, Deal AM, Williams GR, et al. Activities, function, and health-related quality of life (HRQOL) of older adults with cancer. J Geriatr Oncol 2017;8(4):249–254. DOI: 10.1016/j.jgo.2017.02.009. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 9.Wildes TM, Ruwe AP, Fournier C, et al. Geriatric assessment is associated with completion of chemotherapy, toxicity, and survival in older adults with cancer. J Geriatr Oncol 2013;4(3):227–34. DOI: 10.1016/j.jgo.2013.02.002. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 10.Loh SY, Musa AN. Methods to improve rehabilitation of patients following breast cancer surgery: a review of systematic reviews. Breast Cancer 2015;7:81–98. DOI: 10.2147/bctt.S47012. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 11.Stout NL, Alfano CM, Belter CW, et al. A bibliometric analysis of the landscape of cancer rehabilitation research (1992–2016). J Natl Cancer Inst 2018;110(8):815–824. DOI: 10.1093/jnci/djy108. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 12.Falcicchio C, Di Lallo D, Fabi A, et al. Use of rehabilitation pathways in women with breast cancer in the first 12 months of the disease: a retrospective study. BMC Cancer 2021;21(1):311. DOI: 10.1186/s12885-021-07927-0. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 13.Mayo SJ, Ajaj R, Drury A. Survivors’ preferences for the organization and delivery of supportive care after treatment: An integrative review. Eur J Oncol Nurs 2021;54:102040. DOI: 10.1016/j.ejon.2021.102040. [DOI] [PubMed] [Google Scholar]
  • 14.Brick R, Lyons KD, Bender C, et al. Factors influencing utilization of cancer rehabilitation services among older breast cancer survivors in the USA: a qualitative study. Support Care Cancer 2021. DOI: 10.1007/s00520-021-06678-9. [DOI] [PubMed] [Google Scholar]
  • 15.Pergolotti M, Alfano CM, Cernich AN, et al. A health services research agenda to fully integrate cancer rehabilitation into oncology care. Cancer 2019;125(22):3908–3916. [DOI] [PubMed] [Google Scholar]
  • 16.Alfano CM, Smith T, de Moor JS, et al. An action plan for translating cancer survivorship research into care. J Natl Cancer Inst 2014;106(11). DOI: 10.1093/jnci/dju287. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 17.Mohile SG, Hurria A, Cohen HJ, et al. Improving the quality of survivorship for older adults with cancer. Cancer 2016;122(16):2459–568. DOI: 10.1002/cncr.30053. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 18.Guida JL, Agurs-Collins T, Ahles TA, et al. Strategies to prevent or remediate cancer and treatment-related aging. J Natl Cancer Inst 2021;113(2):112–122. DOI: 10.1093/jnci/djaa060. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 19.Gallicchio L, Tonorezos E, de Moor JS, et al. Evidence gaps in cancer survivorship care: A report from the 2019 National Cancer Institute Cancer Survivorship Workshop. J Natl Cancer Inst 2021;113(9):1136–1142. DOI: 10.1093/jnci/djab049. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 20.Mollica MA, Smith AW, Tonorezos E, et al. Survivorship for individuals living with advanced and metastatic cancers: National Cancer Institute meeting report. J Natl Cancer Inst 2022;114(4):489–495. DOI: 10.1093/jnci/djab223. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 21.Sandelowski M What’s in a name? Qualitative description revisited. Res Nurs Health 2010;33(1):77–84. DOI: 10.1002/nur.20362. [DOI] [PubMed] [Google Scholar]
  • 22.Sandelowski M Whatever happened to qualitative description? Res Nurs Health 2000;23(4):334–40. DOI: 10.1002/1098-240x. [DOI] [PubMed] [Google Scholar]
  • 23.Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Healthc 2007;19(6):349–357. [DOI] [PubMed] [Google Scholar]
  • 24.Francis JJ, Johnston M, Robertson C, et al. What is an adequate sample size? Operationalising data saturation for theory-based interview studies. Psychol Health 2010;25(10):1229–1245. DOI: 10.1080/08870440903194015. [DOI] [PubMed] [Google Scholar]
  • 25.Etikan I, Musa SA, Alkassim RS. Comparison of convenience sampling and purposive sampling. Am J Theor Appl Stat 2016;5(1):1–4. [Google Scholar]
  • 26.American Cancer Society. Breast Cancer Facts & Figures 2019–2020. Atlanta: American Cancer Society, Inc., 2019. [Google Scholar]
  • 27.Etikan I, Bala K. Sampling and sampling methods. Biometrics Biostatistics Int J 2017;5(6):00149. [Google Scholar]
  • 28.Jacob SA, Furgerson SPJQR. Writing interview protocols and conducting interviews: tips for students new to the field of qualitative research. Qual Rep 2012;17:1–10. [Google Scholar]
  • 29.McLellan E, MacQueen KM, Neidig JL. Beyond the qualitative interview: Data preparation and transcription. J Field Methods 2003;15:63–84. [Google Scholar]
  • 30.Korstjens I, Moser A. Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. Eur J Gen Pract 2018;24(1):120–124. DOI: 10.1080/13814788.2017.1375092. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 31.Silver JK, Baima J. Cancer prehabilitation: an opportunity to decrease treatment-related morbidity, increase cancer treatment options, and improve physical and psychological health outcomes. Am J Phys Med Rehabil 2013;92(8):715–27. DOI: 10.1097/PHM.0b013e31829b4afe. [DOI] [PubMed] [Google Scholar]
  • 32.Pergolotti M, Covington KR, Lightner AN, et al. Association of outpatient cancer rehabilitation with patient-reported outcomes and performance-based measures of function. Rehab Oncol 2021. DOI: 10.1097/01.Reo.0000000000000245. [DOI] [Google Scholar]
  • 33.Pergolotti M, Deal AM, Williams GR, et al. Older adults with cancer: A randomized controlled trial of occupational and physical therapy. J Am Geriatr Soc 2019;67(5):953–960. DOI: 10.1111/jgs.15930. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 34.Jones JM, Saeed H, Katz MS, Lustberg MB, Forster VJ, Nekhlyudov L. Readdressing the Needs of Cancer Survivors During COVID-19: A Path Forward. J Natl Cancer Inst 2021;113(8):955–961. DOI: 10.1093/jnci/djaa200. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 35.Brick R, Padgett L, Jones J, et al. The influence of telehealth-based cancer rehabilitation interventions on disability: a systematic review. J Cancer Surviv 2022. DOI: 10.1007/s11764-022-01181-4. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 36.Schmid JP. Telehealth during COVID-19 pandemic: will the future last? Eur J Prev Cardiol 2020. (In eng). DOI: 10.1093/eurjpc/zwaa016. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 37.Kokts-Porietis RL, Stone CR, Friedenreich CM, Froese A, McDonough M, McNeil J. Breast cancer survivors’ perspectives on a home-based physical activity intervention utilizing wearable technology. Support Care Cancer 2019;27(8):2885–2892. DOI: 10.1007/s00520-018-4581-7. [DOI] [PubMed] [Google Scholar]
  • 38.Alfano CM, Cheville AL, Mustian K. Developing high-quality cancer rehabilitation programs: A timely need. Am Soc Clin Oncol Educ Book 2016;35:241–9. DOI: 10.14694/EDBK_156164 [DOI] [PubMed] [Google Scholar]
  • 39.Santa Mina D, Brahmbhatt P, Lopez C, et al. The case for prehabilitation prior to breast cancer treatment. Phys Med Rehabil 2017;9(9S2):S305–S316. DOI: 10.1016/j.pmrj.2017.08.402. [DOI] [PubMed] [Google Scholar]
  • 40.Treanor C, Kyaw T, Donnelly M. An international review and meta-analysis of prehabilitation compared to usual care for cancer patients. J Cancer Surviv 2018;12(1):64–73. DOI: 10.1007/s11764-017-0645-9. [DOI] [PubMed] [Google Scholar]
  • 41.Stout NL, Binkley JM, Schmitz KH, et al. A prospective surveillance model for rehabilitation for women with breast cancer. Cancer 2012;118:2191–2200. (In English). DOI: 10.1002/cncr.27476. [DOI] [PubMed] [Google Scholar]
  • 42.Lyons KD, Radomski MV, Alfano CM, et al. Delphi study to determine rehabilitation research priorities for older adults with cancer. Arch Phys Med Rehabil 2017;98(5):904–914. DOI: 10.1016/j.apmr.2016.11.015. [DOI] [PubMed] [Google Scholar]
  • 43.Corbett T, Cummings A, Calman L, et al. Self-management in older people living with cancer and multi-morbidity: A systematic review and synthesis of qualitative studies. Psycho-Oncol 2020;29(10):1452–1463. ( 10.1002/pon.5453). DOI: 10.1002/pon.5453. [DOI] [PubMed] [Google Scholar]
  • 44.O’Cathain A, Croot L, Duncan E, et al. Guidance on how to develop complex interventions to improve health and healthcare. BMJ Open 2019;9(8):e029954. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 45.Geronimus AT, Hicken M, Keene D, Bound J. “Weathering” and age patterns of allostatic load scores among blacks and whites in the United States. Am J Public Health 2006;96(5):826–833. DOI: 10.2105/ajph.2004.060749. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 46.Yedjou CG, Sims JN, Miele L, et al. Health and racial disparity in breast cancer. In: Ahmad A, ed. Breast Cancer Metastasis and Drug Resistance: Challenges and Progress. Cham: Springer International Publishing; 2019:31–49. [Google Scholar]
  • 47.Sholas M Racial disparities in access to and outcomes from rehabilitation services. PM&R Knowledge Now. (https://now.aapmr.org/racial-disparities-in-access-to-and-outcomes-from-rehabilitation-services/). [Google Scholar]

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

SDC

RESOURCES