A virtual resiliency program for lymphoma survivors: helping survivors cope with post-treatment challenges

Abstract

Objectives

To adapt and test the feasibility, acceptability, and preliminary efficacy of an 8-week resiliency group program for posttreatment lymphoma survivors.

Design and outcomes.

This is an exploratory mixed methods study. Phase 1: We conducted qualitative interviews to inform program adaptation. Phase 2: Using a single-arm pilot design, we assessed program feasibility, acceptability, and preliminary efficacy (exploratory outcomes: stress coping, uncertainty intolerance, distress). We also examined the feasibility of collecting hair cortisol samples.

Results.

Phase 1: Survivors reported feeling socially isolated as they grappled with lingering symptoms that interfered with their return to normalcy. Fears about recurrence triggered bodily hypervigilance. Survivors desired wellness programs that 1) target their whole-body experience, 2) promote social connectedness, and 3) manage fear of recurrence. Phase 2: Thirty-seven survivors enrolled. Participants completed a median of 7/8 sessions, and 76.9% completed ≥6/8 sessions; 65% provided a hair sample. Survivors demonstrated improvements in stress coping (d=.67), uncertainty tolerance (d=.71), and anxiety (d=.41) at program completion.

Conclusions.

Findings suggest promising feasibility and efficacy of this program in addressing posttreatment survivorship challenges, particularly fears of uncertainty. A cancer care model that adopts early integration of this program posttreatment has the potential to improve survivors’ emotional, social and physical well-being.

Background

With 5-year survival rates averaging 87% and 72% for Hodgkin lymphoma (HL) and Non-Hodgkin lymphoma (HL), the number of lymphoma survivors in the U.S. is expected to grow (Howlader et al., 2019). These survival gains, however, come at the expense of survivors’ physical and emotional health. Compared to other survivors, lymphoma patients experience an increased number of physical and emotional challenges posttreatment that occur unexpectedly, last longer, and critically interfere with their quality of life as they strive to adjust to life after treatment (Bryant et al., 2016; Howlader et al., 2019; Jones et al., 2015a, 2015b; Troy et al., 2019). These survivorship demands elicit chronic stress, which has been linked to greater distress, stress system activation, impaired immune functioning, maladaptive coping behaviours, and greater risk for physical disease (Goldstein & Kopin, 2007; Irwin, 2008; Leclair et al., 2019; Spector et al., 2015).

Mind-body programs can help lymphoma survivors adjust to the demands of post-treatment survivorship. Indeed, mind-body therapies have become increasingly popular in cancer survivorship, with trials demonstrating promising improvements in many of the aftereffects of treatment (Carlson et al., 2017; Viscuse et al., 2018). Notably, existing treatments have been largely unimodal, brief, and symptom-focused. Many have targeted breast cancer populations or recently diagnosed patients and long-term survivors (Carlson et al., 2017; Viscuse et al., 2018); few, if any, have targeted the multidimensional, transitional challenges of lymphoma survivors. There is an emergent need to examine the benefits of introducing mind-body programs at end-of-cancer treatment to maximize the health and well-being of posttreatment lymphoma survivors.

The Stress Management and Resilience Training-Relaxation Response Resiliency Program [SMART-3RP; Park et al., 2013] is a comprehensive, multi-modal, mind-body group program designed to improve stress adaptation and resilience. Delivered virtually or in-person over 8 weekly sessions, the SMART-3RP teaches a blending of stress-coping skills grounded in mind-body, cognitive behavioural and positive psychology principles to build one’s capacity to manage stress. Specifically, mind-body practices (e.g., breath awareness) help reduce ones’ physiological stress response by eliciting the relaxation response. In effect, this enables one to remain physiologically centered under stressful conditions (Beary & Benson, 1974; Esch et al., 2003; Rush & Sharma, 2017). Cognitive behavioural tools increase one’s awareness of being in the stress response (e.g., thoughts, emotions, behaviours) and teaches techniques to alter these components. Positive psychology strategies facilitate the shifting of attention to positive experiences (e.g., gratitude) and coping techniques (e.g., humor). Altogether, daily practice of mind-body strategies that elicit the relaxation response creates an internal physiological environment that facilitates the practice of stress coping skills. The SMART-3RP has demonstrated preliminary efficacy in improving psychological and physical health symptoms across different populations, including patients with neuro-fibromatosis, palliative care clinicians, and parents of children with learning disabilities (Mehta et al., 2016; Park et al., 2020; Vranceanu et al., 2014).

This two-phase study sought to test the feasibility of an adapted SMART-3RP, the 3RP-Lymphoma, for lymphoma survivors completing cancer treatment. The first phase consisted of clinician stakeholder meetings and qualitative interviews with patients to guide program adaptation. The second phase consisted of a single-arm trial to examine the feasibility, acceptability and preliminary efficacy (e.g., stress, distress, intolerance of uncertainty) of the 3RP-Lymphoma among early posttreatment lymphoma survivors.

Methods

Overall study design

This study was conducted at an academic medical center in Boston, MA (clinicaltrials.gov registration: NCT03212261). The hospital’s institutional review board approved all study procedures. We obtained informed consent all patients prior to their participation.

Participants

Lymphoma participants.

Eligible participants included adults who were within two years of completing treatment for lymphoma. The study team relied on provider referral and medical chart review to identify eligible patients. Potential participants were either approached during a posttreatment follow-up clinic visit or contacted by phone. Interested patients were screened to confirm eligibility, consented, and scheduled for a 30-minute, semi-structured interview designed to elicit their perspectives of 1) the challenges patients faced at end-of-treatment; 2) barriers and facilitators to seeking psychosocial support; and 3) psychosocial program preferences and needs (e.g., preferred method of program delivery).

Clinician stakeholders.

To facilitate clinical integration of this program and encourage provider support, the study team met with the lymphoma clinicians twice during regular clinical meetings to identify topics to explore in our patient qualitative interviews and to refine the program and study operations.

Data analysis

Patient interviews were audio-recorded and transcribed. Two study staff reviewed each transcript independently to identify themes and develop a thematic coding framework. Coders met on a regular basis to compare coding schemes; all data that were discrepant, unexpected, and unclear were compared to raw data and reviewed with the PI. The themes were further collapsed into major categories and subcategories, which were reviewed until we achieved mutual agreement.

Results

A total of 11 patients participated in this phase [Appendix Table 1 and Figure 1]. Survivors described struggling with returning to normalcy and feelings of social isolation that were exacerbated by lingering treatment effects, including fatigue and pain. Hypervigilance of physical symptoms and lack of clarity about self-care guidelines, specifically related to nutrition and sleep, triggered chronic worry about cancer recurrence. This sense of uncertainty permeated into other aspects of their life, such as work and family. While survivors reported positive experiences with their oncology care team, they did not perceive psychosocial support was well integrated into their care. Challenges to psychosocial care utilization included a) lack of provider referral, b) fear of being “pathologised,” and c) paucity of accessible and tailored services. Survivors noted a preference for wellness-oriented, skills-building programs that 1) targeted their whole-body experience, including emotional and physical needs, 2) provided communication skills regarding social support needs, 3) promoted social connectedness, 4) included information about fatigue, sleep and nutrition, focusing on dispelling myths, and 5) helped manage fears of recurrence and uncertainty.

Figure 1.

Experimental design and study flow.

Program adaptation: 3RP-lymphoma

Building upon the original SMART-3RP (Park et al., 2013) we adapted the 3RP-lymphoma content based on phase 1 findings [Appendix Figure 1 and Appendix Table 2]: 1) To address reported challenges with shifting away from ruminative thoughts, the 3RP-lymphoma emphasised relaxation response elicitation tools that were tangible and concrete, such as guided imagery and body-based exercises. Additionally, we focused on teaching autogenic training, a relaxation technique that emphasizes the warming of different parts of the body, to help survivors befriend their bodies by replacing negative associations (e.g., beliefs about body betrayal) with positive experiences (i.e., sensation of warmth); 2) Discussions about stress awareness included recognizing fatigue as both a stress trigger and stress signal, comparing fatigue to other emotional, physical, and behavioural changes they experience in response to psychosocial demands. Strategies, such as fatigue pacing, subsequently helped address survivors’ desire to return to normalcy by identifying ways to re-introduce activities based on varying energy levels; and 3) To increase the use of adaptive strategies, participants were taught how to use thought logs to work through scenarios related to fears of recurrence and uncertainty by generating adaptive perspectives, including acceptance, self-confidence, compassion and self-empowerment. Additionally, social support centered on learning communication strategies to ask for the type of support they need, interweaving conversations about empathy and perspective taking to facilitate connectedness.

The 3RP-lymphoma exercises were adapted for virtual delivery via Vidyo, a HIPAA-compliant, Telehealth platform. This allowed survivors to join group sessions remotely, thereby facilitating emotional support, social validation, and access to psychosocial support without the burden of travel. It was particularly helpful in addressing common emotional challenges survivors faced with returning to the cancer center for psychosocial services.

Participants and design

Phase 2 eligibility criteria resembled phase 1 with the addition of exclusion criteria for patients who were unable or unwilling to use the videoconferencing software. From August-December 2017, participants were actively recruited, consented and allocated to groups based on their scheduling preferences (e.g., day or evening groups). Participants completed a test call prior to starting group sessions to download the videoconferencing software and to problem-solve any technological glitches.

We ran a total of five 3RP-lymphoma groups consisting of 4–6 participants. The virtual 3RP-lymphoma groups were 1.5 hours in length and met approximately weekly over the span of 8 weeks. Study measures were completed electronically via Research Electronic Data Capture (REDCap) at three timepoints: baseline (T1), post-program completion (T2: 2-months post-enrolment) and approximately one-month post-program completion (T3). Hair samples for cortisol measurement (stress biomarker) were collected from eligible participants at baseline.

Measures

Demographic information.

Sociodemographic data, cancer and treatment history were collected at baseline.

Primary outcomes

Feasibility.

A session completion target rate of 75% (6 out of 8 sessions) was set as a primary measure of feasibility. Feasibility was also assessed by examining recruitment and enrolment rates (proportion of eligible, interested, and enrolled patients), session attendance, and retention (completed study measures).

Acceptability:

Intervention acceptability was assessed at one-month follow-up with five questions rated on a 4-point Likert scale (1 = not at all to 4 = very much). Items prompted participants to rate the extent to which they found the program to be 1) enjoyable, 2) helpful, 3) applicable/relevant and 4) convenient. Participants were also asked to indicate the likelihood of future relaxation response practice and to describe what they liked best and least about the 3RP-lymphoma. Treatment satisfaction was assessed by asking participants to rate their level of satisfaction with the 3RP-lymph-oma 1) structure, 2) timing (i.e., posttreatment) and 3) content using a 4-point Likert scale (1 = not at all satisfied to 4 = very satisfied).

Preliminary efficacy.

Stress.

Perceived stress was assessed with a one-item, 11-point scale ranging 0–10 (NCCN, 2007).

Distress.

Depression and anxiety symptoms were measured using the Center for the Epidemiological Studies of Depression Short Form ( CES-D-10; Irwin et al., 1999; Hann et al., 1999) and the Generalized Anxiety Disorder 7-item scale (GAD-7; Spitzer et al., 2006). The 12-item Intolerance of Uncertainty Scale – Short Form (IUS-12; Carleton et al., 2007; Khawaja & Yu, 2010) was used to measure intolerance of uncertainty.

Stress coping.

The 13-item Measure of Current Status – Part A (MOCS-A) was used to measure perceived ability to cope with stress (Antoni et al., 2006; Penedo et al., 2013).

Fatigue.

Perceived fatigue disruption was measured with the 6-item subscale of the Fatigue Symptom Inventory ( FSI; Hann et al., 1998; Donovan et al., 2008).

Biomarker measurement feasibility.

Feasibility of hair sampling as a cortisol measurement technique was assessed by examining the proportion of participants who were interested in, eligible, and opted to provide a baseline hair sample. Hair cortisol provides a robust and complete snapshot of cortisol concentration levels across long periods (e.g., 3 cm of hair corresponds to 3 months) (Iglesias et al., 2015; Sauve et al., 2007).

Analyses

SPSS version 22.0 was used to conduct all statistical analyses for this study. Prior to data analysis, all of the data were examined for normality and screened for missing information. Descriptive statistics were performed to describe the sample and to summarise feasibility, acceptability, and program satisfaction.

Feasibility outcomes.

Feasibility outcomes were assessed by the proportion of individuals who were identified, screened, approached and enrolled in the study. Feasibility metrics for the hair sampling include hair return rates. We also examined the proportion of individuals who attended each session, participated in relaxation practice, and completed study assessments. Participants who completed at least 75% of treatment sessions were considered treatment completers. Response frequencies summarised reasons for ineligibility and refusal. Acceptability data was examined by examining both quantitative data and open-ended feedback from participants at the one-month follow-up.

Preliminary efficacy.

We examined missing data to determine if the mechanism of missing data is missing at random. Mean scores were imputed for a small number of cases in which one or two items were missing from a scale. Paired samples T-tests were used to examine pre and post-program differences (T2 vs T1) for each of our exploratory outcomes aforementioned using all available data. We also assessed the sustained effects of the intervention by evaluating change in scores from T2 to T3. This analysis allowed us to assess if there was a trend towards maintenance of treatment effects, but it is not powered to detect significant differences. All statistical tests were two-tailed, and the significance level was set at p < .05. The strength of the effect was evaluated using Cohen’s d. Hair cortisol. Participants who have taken glucocorticoid medications (e.g. prednisone) within the past 3 months or those who did not have hair were not eligible to provide a sample. We examined the univariate distribution of cortisol at T1. Hair cortisol data were skewed and had several outliers (Z > 2.5); however, we report means and standard deviations in their original units to facilitate comparison with other studies.

Results

Baseline Characteristics [Table 1].

Table 1.

Demographics of baseline completers (n = 30).

	N (%)
Age, mean (range)	53.06 (23.13–64.89)
Gender
Female	15 (50.0)
Race
White, non-Hispanic	29 (96.7)
Marital Status, N (%)
Married/Living as Married	22 (73.3)
Widowed/Divorced/Separated	5 (16.7)
Single, never married	3 (10.0)
Education, N (%)
High School or GED	2 (6.7)
Some college	6 (20.0)
> College degree or higher	22 (73.3)
Employment Status
Employed full-time	16 (53.3)
Employed part-tme	5 (16.7)
Unable to work due to illness/disability	4 (13.3)
Not working and not looking for work	2 (6.7)
Retired	2 (6.7)
Other	1 (3.3)
Cancer Type
Diffuse Large B-cell Lymphoma (DLBCL)	10 (33.3)
Classical Hodgkin’s Lymphoma	6 (20.0)
Follicular Lymphoma	6 (20.0)
Splenic Marginal Zone Lymphoma	2 (6.7)
Mantle Cell Lymphoma	2 (6.6)
Mediastinal Large B-cell Lymphoma	1 (3.3)
Post-transplant lymphoma	1 (3.3)
B-Cell lymphoma	1 (3.3)
DLBCL and Follicular lymphoma	1 (3.3)

Approximately half of the participants were female, and the majority identified as white, non-Hispanic. The sample was predominantly young (mean age = 52.4, SD = 12.2) and married (65.4%). Non-Hodgkin’s Lymphoma was the most prominent diagnosis (76.9%). All participants had been treated with combination chemotherapy with curative intent.

Primary outcomes

Feasibility.

Screening and enrolment [Figure 1]:

We identified 143 patients via referral or preliminary screening of the center’s electronic medical record; 34 were ineligible due to provider refusal (n = 16), speaking a language other than English (n = 14), and not having a computer/camera/internet (n = 4). Amongst the remaining patients, we successfully approached 79 (72.5%) either by phone or during a medical encounter to confirm eligibility. Thirty-seven patients (46.8% of those successfully approached) signed the study consent form, 18 remained interested but were unable to enrol, and 24 refused; refusal reasons included general non-interest (n = 7), concerns about session length (n = 5), no time (n = 4), and not feeling stressed (n = 3). Due to technological challenges, 2 participants became ineligible. Five participants left the study after consent but before completing the baseline survey and initiating treatment due to personal reasons, leaving a total of 30 participants who completed the baseline assessments and thus enrolled in the study.

Study participation:

A total of 26 participants out of the 30 enrolled (86.7%) initiated the 3RP-lymphoma; among these, 20 completed at least 6 of the 8 sessions. Seven was the median number of sessions completed. The majority of participants completed the post-program (n = 22) and one-month survey (n = 21). Nearly half (47.6%) reported daily use of relaxation response elicitation strategies over the past month with 90.5% indicating they practice these strategies at least “a few times a week.” A large majority (76.2%) reported they would be very likely to use these strategies in the future.

Hair sampling:

Nineteen of the 26 3RP-lyphoma participants (73.1%) expressed interest in providing hair samples for cortisol measurement; 6 were ineligible due to having no hair (n = 5) or because of steroid use (n = 1). Of the 20 patients eligible to provide a sample, 6 (30.0%) declined and 1 provided an insufficient sample (5.0%); we obtained hair samples from 13 (65.0%).

Acceptability.

All of the one-month follow-up respondents (n = 21) reported they enjoyed the program and found it to be helpful and relevant to their end-of-treatment experiences (Appendix Table 3). Similarly, a majority (n = 20) were satisfied with the program content and timing (posttreatment). Group support and validation as well as learning a variety of coping skills and relaxation response tools were highlighted as being the things participants liked the most about the program. Respondents (n = 18) likewise reported feeling satisfied with the 8-session weekly structure. Although 19 considered the online modality to be convenient, 2 participants reported being some-what dissatisfied and viewed the online modality as not convenient. Specifically, they reported having too many competing personal demands, frustration with the technical glitches, and challenges with the frequency with which the group met. Concerns about connectivity disruptions was identified by 6 other participants. Notwithstanding, none recommended shorter or in-person visits. Rather, suggestions for program improvement included increasing session length (1.5 to 2-hours) to allow time for covering the material; spreading out visits to allow more time for skills practice; weekend sessions to overcome scheduling conflicts; and boosters to reinforce skills and facilitate ongoing support. In particular, one participant shared,

‘It might be helpful if there was some kind of after-the-study-is-over program that could be offered if folks wanted to continue meeting with someone, even if it was private pay.’

Preliminary efficacy.

Mean changes in preliminary outcomes are presented in Tables 2 and 3. At baseline, survivors reported moderate levels of stress (VAS; mean = 5.6, SD = 3.0). Although stress did not decrease at program completion (p = .51), survivors reported significant improvements in stress coping (MOCs-A; p = .005, d =.67) with a medium to large effect size for each subdomain; specifically, participants reported feeling more able to relax at will (p = .01, d = .60), be assertive about their needs (p =.09, d = .41), recognise and manage tense situations (.05, d = .44). Furthermore, participants reported improvements in coping confidence (p = .009, d = .62). Intolerance of uncertainty also significantly decreased from pre- to post-program (p = .003, d = .71). We saw similar but non-significant improvements in anxiety (p = .07, d = .41) and depressed mood (p = .19, d = .29). Despite these changes, there were no significant changes in fatigue (p > .05, d = .01). Results using multiple imputation for data missingness at post-program completion and follow-up showed a similar pattern (results not shown).

Table 2.

Within-group changes from time 1 (baseline) to time 2 (end-of treatment).

	Pre-intervention Mean (SD)	Post-intervention Mean (SD)	Effect size (d)
Reported Stress †	5.6 (3.0)	6.1 (1.7)	.14
Stress Coping (MOCS-A) ‡	23.6 (8.6)	28.9 (6.1)	.67
Relaxation	2.8 (1.9)	4.1 (2.0)	.60
Awareness of tension	6.3 (2.8)	7.6 (2.0)	.44
Assertiveness	5.7 (2.8)	6.5 (2.0)	.41
Coping confidence	8.9 (3.5)	10.8 (3.1)	.62
Depression (CES-D) §	9.3 (4.9)	8.0 (4.0)	.29
Anxiety (GAD7) ¶	8.1 (5.4)	6.2 (4.6)	.41
Uncertainty Intolerance (IUS12) λ	29.4 (6.3)	25.1 (6.1)	.71
Prospective Intolerance	19.4 (4.9)	16.5 (3.8)	.70
Inhibitory Intolerance	8.1 (2.8)	8.6 (3.1)	.21
Fatigue Disruption (FSI-Disruption) ▫	17.9 (11.9)	18.1 (12.7)	.01

^*Sample sizes for analyses reflect available data from study completers at time 2 (n = 22).

^†Stress Visual Analogue Scale (range 0–10).¹⁴ Single item scale. 0 indicates no perceived stress and 10 indicates extreme stress.

^‡MOCs-A: Measure of Current Status – Part A (range 0–52). Sum score of 13 items with ranges 0–4. Higher scores reflect greater perceived ability to cope with stress. Composite score consists of four subscales reflecting different aspects of coping: awareness of tension, ability to relax at will, ability to assert needs, and coping confidence.^20–21 The MOCS-A has been successfully used to document change in participants’ ability to decrease the stress response.²¹

^§CES-D: Center for the Epidemiological Studies of Depression Short Form (range 0–30). Sum of 10 items with ranges of 0 – 3 measuring symptoms of depression over the past week. Items 5 and 8 are reverse scored. Higher scores reflect higher levels of depressed mood; score of 10 or higher is considered depressed.^15–16

^¶GAD-7: Generalized Anxiety Disorder 7-item scale (range 0–21). Sum score of 7 individual items with ranges of 0–3. Higher scores indicate more symptoms of anxiety; cutoff score of 10 is considered to reflect moderate levels of anxiety.¹⁷

^λIUS-12: Intolerance of Uncertainty Scale – Short Form (range 12–60). Sum score of 12 items with ranges 0–5 that are used to measure of intolerance of uncertainty. Higher scores reflect greater intolerance of uncertainty. Composite score is comprised of two subscales measuring avoidance of uncertainty (inhibitory intolerance of uncertainty; range 0–35) and a desire for predictability (prospective intolerance of uncertainty; range 0–25).^18–19

^▫FSI: Fatigue Symptom Inventory – Fatigue Disruption Index (range 0–70). Fatigue Symptom Inventory is 14-item self-report measure that assesses the severity, frequency, and daily pattern of fatigue as well as its perceived interference with quality of life. Fatigue disruption index consists of sum of 7 items (questions 5–11) with ranges 0–10; higher scores reflect higher perceived disruption.^22–23

Table 3.

Within-group changes from time 2 (post-treatment) to time 3 (1 month follow-up).

	Post-intervention Mean (SD)	One month Follow-up Mean (SD)	Effect size (d)
Reported Stress †	6.2 (1.8)	5.7 (2.4)	.20
Stress Coping (MOCS-A) ‡	29.4 (6.4)	30.7 (6.4)	.24
Ability to relax at will	4.3 (1.9)	4.5 (1.6)	.18
Awareness of tension/stress	7.6 (2.1)	7.2 (2.1)	.15
Ability to assert needs	6.6 (2.0)	7.7 (2.0)	.55
Coping confidence	10.9 (3.3)	11.3 (3.0)	.13
Depression (CES-D) §	8.2 (4.1)	7.3 (3.1)	.23
Anxiety (GAD7) ¶	6.1 (5.0)	5.2 (3.4)	.18
Uncertainty Intolerance (IUS12) λ	25.6 (6.2)	26.3 (6.0)	.13
Prospective Intolerance	16.9 (3.6)	17.3 (4.1)	.15
Inhibitory Intolerance	8.7 (3.2)	9.1 (3.1)	.12
Fatigue Disruption (FSI-Disruption) ▫	17.7 (13.2)	15.5 (12.7)	.21

^*Sample sizes for analyses reflect available data from participants who completed both time 2 and 3 survey (n = 19).

^†Stress Visual Analogue Scale (range 0–10).¹⁴ Single item scale. 0 indicates no perceived stress and 10 indicates extreme stress.

^‡MOCs-A: Measure of Current Status – Part A (range 0–52). Sum score of 13 items with ranges 0–4. Higher scores reflect greater perceived ability to cope with stress. Composite score consists of four subscales reflecting different aspects of coping: awareness of tension, ability to relax at will, ability to assert needs, and coping confidence.^20–21 The MOCS-A has been successfully used to document change in participants’ ability to decrease the stress response.²¹

^§CES-D: Center for the Epidemiological Studies of Depression Short Form (range 0–30). Sum of 10 items with ranges of 0 – 3 measuring symptoms of depression over the past week. Items 5 and 8 are reverse scored. Higher scores reflect higher levels of depressed mood; score of 10 or higher is considered depressed.^15–16

^¶GAD-7: Generalized Anxiety Disorder 7-item scale (range 0–21). Sum score of 7 individual items with ranges of 0–3. Higher scores indicate more symptoms of anxiety; cutoff score of 10 is considered to reflect moderate levels of anxiety.¹⁷

^λIUS-12: Intolerance of Uncertainty Scale – Short Form (range 12–60). Sum score of 12 items with ranges 0–5 that are used to measure of intolerance of uncertainty. Higher scores reflect greater intolerance of uncertainty. Composite score is comprised of two subscales measuring avoidance of uncertainty (inhibitory intolerance of uncertainty; range 0–35) and a desire for predictability (prospective intolerance of uncertainty; range 0–25).^18–19

^▫FSI: Fatigue Symptom Inventory – Fatigue Disruption Index (range 0–70). Fatigue Symptom Inventory is 14-item self-report measure that assesses the severity, frequency, and daily pattern of fatigue as well as its perceived interference with quality of life. Fatigue disruption index consists of sum of 7 items (questions 5–11) with ranges 0–10; higher scores reflect higher perceived disruption.^22–23

Follow-up scores revealed potential maintenance of program effects. While participants’ perceptions of their ability to assert their needs increased significantly from post-program completion to follow-up (MOCSA-assertiveness; p =.03, d = .55), none of the other psychosocial measures significantly changed (ps > .11).

Fourteen participants provided a hair sample at study entry. Of these, one sample was excluded due to patient reported use of a glucocorticoid at time of sampling. A second sample was excluded due to insufficient hair quantity. Mean cortisol concentration for the 12 participants was 5.11 pg/mg (SD = 5.58). Importantly, although the data was positively skewed, we report mean cortisol concentrations to allow for comparison with other populations.

Discussion

Using a collaborative program development approach, we successfully adapted and tested a mind-body resiliency program targeted to the needs of lymphoma survivors transitioning into posttreatment survivorship. This study is amongst the first to deliver a comprehensive psychosocial program during this critical period of transition. Overall, our findings suggest that a virtually-delivered resiliency program for lymphoma survivors completing cancer treatment may be feasible, acceptable, and potentially efficacious in generating meaningful changes in the emotional well-being for this cohort of early posttreatment lymphoma survivors. Although scheduling and technology was indeed challenging for some patients, the level of enrolment and participation observed is encouraging and should be further examined in larger trials with more diverse populations.

Encouragingly, nearly half of eligible survivors enrolled in the study despite having limited, pre-set group times, and scheduled visits during a busy holiday season (Nov-Jan). Program adherence and study retention rates were also high; a large majority of survivors who initiated the 3RP-lymphoma (i.e., engaged in at least one session) completed 6 out of 8 video-conference sessions (77%; 20/26), and 90% (19/21) of post-program survey completers also completed the one-month follow-up. The gender distribution of our study participants is also notable. Although prior research suggests greater interest in mind-body practices among women (Clarke et al., 2018; Rush & Sharma, 2017), the fact that we saw equal participation rates among both genders suggests the program is uniformly appealing.

As a whole, 3RP-lymphoma participants also reported enjoying the program, citing peer support and the mix of coping skills as being amongst the most liked program features. Of note, while a few experienced technical challenges while in the program, these challenges did not appear to diminish their perceived benefits or ability to participate. By and large, 3RP-lymphoma participants found the online modality to be convenient, and none identified a preference for in-person sessions. On the contrary, nearly all desired longer sessions and additional e-visits to reinforce skills. We speculate that the virtual modality may have supported participation by overcoming common logistical challenges to accessing psychosocial programs, such as missing work, traveling to the city, and/or paying for childcare. The use of a videoconference platform allows survivors to receive support from providers within their own trusted institution, which may provide patients with a sense of care continuity and appeal to survivors who may otherwise avoid additional visits to their cancer center due to anxiety. Nonetheless, these findings contribute to the growing literature and interest in exploring the accessibility of telehealth interventions for cancer survivors. They suggest that with technology support, telehealth interventions may help overcome practical obstacles to service use and may instead reduce social isolation and promote patient engagement in psychosocial services. Importantly, considering that 7 survivors were unable to participate due to technological challenges (e.g., having no internet/camera or experiencing connection challenges), it’s important to acknowledge that telehealth obstacles do remain and need to be addressed in future trials.

Our acceptability findings are supported by measurable improvements in several of our secondary outcomes. Specifically, following the intervention, participants demonstrated small to large improvements in anxiety, depressed mood, and stress coping; of note, many of these effects were maintained, or continued to improve, at follow-up. These effects are comparable to those documented in other mind-body interventions conducted with cancer patients, many of whom were women with breast cancer (Antoni et al., 2006; Carlson et al., 2017; Rush & Sharma, 2017). Nonetheless, these findings are noteworthy, as our participants demonstrated distress symptoms (depression baseline: M =9.3, SD = 4.9; anxiety: M = 8.1, SD = 5.4) that approached clinical levels at study entry before dropping below clinical thresholds after program completion. Importantly, the program’s emphasis on teaching stress coping skills may have enabled survivors to recognise stressful situations and employ strategies to regulate their mood in the midst of stressors. This may explain why we observed changes in mood without witnessing concomitant changes in perceived stress. In truth, lymphoma survivors are subject to experiencing multiple social, physical, and financial stressors post-cancer treatment (Hackett & Dowling, 2019; Heutte et al, 2009; Oerlemans et al., 2011; Parry et al., 2012); while these stressors are not modifiable, results suggest that their response to stress may instead be adjustable. The program may work by reinforcing survivors’ confidence and ability to cope, thereby buffering the effects of stress. In accordance, we noted corresponding changes in each of the subscales of the MOCS-A (our coping measure).

Additionally, we saw promising program effects on survivors’ ability to tolerate uncertainty. The notion of uncertainty is a challenge for all cancer survivors, but it may be even more so for individuals treated for lymphoma. Due to their cancer type, intensive treatment regimen and often younger age at diagnosis, lymphoma survivors face real yet unpredictable risks to their functional abilities, health and overall future (Oerlemans et al., 2011; Hackett et al., 2019). Uncertainty may thus itself pose as a chronic stressor that interferes with survivors’ well-being and ability to cope; the fact that we were able to make meaningful shifts in their ability to tolerate uncertainty in such a short period is important, and it can have long-term implications on their adjustment experience and overall quality of life.

Given the well-known connection between the body’s stress systems, immune functioning, and overall health states (Goldstein & Kopin, 2007; Irwin, 2008), it is important to learn how these transitional experiences may affect survivors’ endocrine functioning. This will allow us to have a better understanding of the long-term implications these stress experiences may have on survivors’ overall physical health. It will also enable future studies to comprehensively demonstrate the long-term, whole-body impact of stress management and resiliency interventions on cancer populations. In this study, we found that survivors were interested in providing hair samples. We were successful in collecting hair from a majority (65%) of eligible patients; however, some patients were ineligible due to glucocorticoid use or to having no hair, which may create a potential barrier for using this collection method. In light of the novelty of hair cortisol measurement, and the diverse methods used for processing hair samples, reference values have not been established (Russell et al., 2012; Staufenbiel et al., 2013). Our levels were slightly lower than those documented in a recent published study conducted with parents of children with autism (Kuhlthau et al., 2020), however, at this stage we caution against interpreting any differences. Our study sample was small, and participants had recently completed cancer treatment. It is still unknown what impact cancer treatment has on hair cortisol. Ongoing hair cortisol measurement in this population, along with the consistent use of hair processing methods, will enable us to develop a better understanding of what these concentrations may mean in the future.

Limitations

Despite the novelty of our study findings, there are some limitations worth noting. This study was a one-arm pilot conducted in a single academic medical setting. Though consistent with the hospitals’ overall demographic pool, our population was predominantly white and highly educated. Accordingly, our findings are limited in generalizability and would benefit from replicating in a larger, randomised trial with populations who face additional socioeconomic stressors. A further limitation of this study is the relatively small sample size, which limited our ability to adjust for multiple comparisons; as such, caution should be taken when drawing conclusions from these findings. Despite these limitations, it is worth highlighting the moderate to large effects noted in our mood and coping indices following the intervention. Moreover, our open criteria increase the capacity of this program to function as a preventive tool that reduces survivors’ long-term risk for distress and improves their overall emotional and physical well-being. Lastly, it’s important to acknowledge that some patients did experience technical and scheduling challenges that impacted their ability to participate. Future trials should explore and compare the feasibility, usability and utility of the 3RP-lymphoma as presented with alternate formats to address the needs of patients who may experience continued obstacles to program participation (e.g., due to scheduling or technical challenges).

Implications and conclusion

This study extends the current body of literature on cancer survivorship by demonstrating the appeal and potential benefits of introducing a mind-body program during the early period following treatment completion. Our findings suggest that a virtual stress management program is both appealing and accessible to adult lymphoma survivors, enabling this distressed and underserved population to access psychosocial support during a transitional time filled with emotional and physical challenges. A cancer care model that adopts early integration of this mind-body program at end-of-treatment and that leverages technology to extend the reach of psychosocial care to all cancer patients has the potential to improve survivors’ emotional, social and physical well-being. In particular, it may help increase patient’s ability to manage the uncertainty surrounding their complex diagnosis and overall future.

Data availability statement

The data that support the findings of this study are available from the corresponding author, GKP, upon reasonable request.