Worsening quality of life in indolent non-Hodgkin lymphoma and chronic lymphocytic leukemia patients in active surveillance: A 12-month longitudinal study

Abstract

Introduction:

Newly diagnosed indolent non-Hodgkin lymphoma and chronic lymphocytic leukemia (NHL/CLL) patients are often monitored for disease progression to delay the impact of cancer-directed therapy on patients’ quality of life. However, research on quality of life in patients under active surveillance versus in cancer-directed treatment has yielded mixed results. This study examined distress and quality of life in indolent NHL/CLL patients in active surveillance or cancer-directed treatment over the first-year post-diagnosis.

Patients and Methods:

Adult patients (≥21 years) with newly diagnosed indolent NHL/CLL completed electronic self-report measure of distress and quality of life every four months over the course of a year for a total of four surveys. Fisher’s exact test and t-tests were used to examine demographic and disease differences between patients receiving different treatments. Mixed-effect models were also used to compare overall differences between treatment status over time, accounting for missing values.

Results:

The sample consisted of 64 patients with known baseline treatment status who did not change treatments over the course of the study. Total quality of life and physical, social and functional quality of life improved over time in patients receiving cancer-directed treatment and decreased over time in patients under active surveillance. Relative to patients in active treatment, overall, social, and functional quality of life in patients under surveillance changed more slowly over time.

Discussion:

Active surveillance may have negative implications for patient quality of life, despite that a common goal of active surveillance is to delay the impact of treatment (e.g., appointments, toxicities) on quality of life.

MICROABSTRACT

This study examined distress and quality of life in indolent non-Hodgkin lymphoma and chronic lymphocytic leukemia (NHL/CLL) patients in active surveillance or cancer-directed treatment. Patients (n=64) completed measures of distress and quality of life every four months over one year. Total quality of life and physical, social and functional quality of life improved in cancer-directed treatment and decreased over time in active surveillance.

INTRODUCTION

While not typically curable,¹ non-Hodgkin lymphomas and chronic lymphocytic leukemia (NHL/CLL) progress slowly with relatively low symptom burden, particularly early in the disease. Treatment generally focuses on minimizing symptom burden, maximizing quality of life, and producing durable remissions.² Newly diagnosed patients are often monitored for disease progression rather than started on active treatment in order to delay treatment side effects and the disruption of cancer treatment on patients’ daily lives. While active monitoring (i.e., surveillance) may delay treatment effects, receiving a cancer diagnosis and then being told to “do nothing” may impact patients’ distress and quality of life. For example, in patients with prostate cancer, also a slow growing cancer, active surveillance is associated with increased distress due to internal and external pressure to “do something” to treat the cancer.³

Health-related quality of life declines after diagnosis of NHL/CLL.⁴ Across studies, patients with CLL report lower quality of life than healthy controls.^5–9 However, the nature of these differences varies across studies with some research suggesting these differences are specific to physical quality of life¹⁰ while others find differences in psychological quality of life.¹¹ In addition, differences in quality of life may be limited to patients who received treatment with patients under active surveillance reporting quality of life scores similar to the general population.⁵

Research on the relationship between treatment type and quality of life is mixed. A review of 18 studies of indolent lymphoma survivors was inconclusive regarding treatment differences in quality of life.¹² In an observational study of NHL patients, current receipt of treatment was associated with worse quality of life.¹³ Similarly, a systematic review of quality of life in NHL patients found that patients who had received chemotherapy reported worse physical and social quality of life than patients who had not received chemotherapy.¹⁴ A study comparing patients receiving maintenance rituximab (one rituximab dose every 3 months versus rituximab re-treatment (rituximab weekly x4 upon disease progression) found no differences in distress or quality of life over time across treatment groups.¹⁵ The sample in this study consisted of patients who had achieved complete or partial response after 4-week rituximab induction therapy rather than treatment naïve patients which may have implications for patient distress and quality of life. While these studies address the relationship between treatment status and quality of life, they do not target the relationship between active surveillance and patient quality of life.

Fewer studies have examined distress and quality of life in patients receiving active surveillance. In a trial comparing maintenance rituximab to surveillance in patients with follicular lymphoma, distress and physical and functional quality of life did not differ over time across groups.¹⁶ However, social and emotional quality of life declined in the surveillance group over seven months while remaining stable in the patients receiving rituximab. Further, patients in the rituximab group were less worried about their treatment at the seven-month time-point than patients in active surveillance and were less likely to avoid information about their illness and to endorse negative reactions to their clinic visits. The authors hypothesized that patients in the rituximab condition may have been comforted by taking active steps to treat the cancer.¹⁶ Observational studies have had mixed results. Some results indicate that quality of life does not differ in patients who received cancer-directed treatment compared to those who were not treated.^{6, 17} However, other studies report worse quality of life in patient treated for CLL than patients who did not receive treatment,⁵ particularly in physical and functional quality of life.¹¹ Few longitudinal studies of quality of life in patients with NHL/CLL have been conducted with one study suggesting that quality of life may be stable over one-year in patients with CLL.⁶ However, patients in this study were .5–15.6 years from diagnosis, likely capturing a wide range of experience of and impact from cancer and treatment that makes specific conclusions difficult.

This prior research suggests that distress and quality of life in patients with indolent NHL/CLL may be related to treatment received. In particular, despite the intent to maximize quality of life, active surveillance may have negative implications for patients’ quality of life. Yet, research on these relationships is limited with mixed results across studies. The purpose of this secondary analysis of an observational study is to examine differences in distress and quality of life in indolent NHL/CLL patients receiving cancer-directed treatment versus active surveillance over the first-year post-diagnosis. We hypothesized that patients under surveillance would report higher distress and worse quality of life over time than patients receiving active treatment.

PATIENTS AND METHOD

Participants and Procedures

Participants were recruited from May 2016 to November 2018 from a single academic medical center in an urban setting. Approval was obtained from the institutional review board (IRB) and all participants provided informed consent. Participants were identified through self-referral from fliers posted in participating clinics, referrals from oncology providers, and medical chart reviews by study staff. Eligible participants were English-speaking and 21 years of age or older with a diagnosis of follicular lymphoma, marginal zone lymphoma, chronic lymphocytic leukemia/small lymphocytic lymphoma, or Waldenstrom’s macroglobulinemia in the past six months. Patients also needed a working email address and internet access to participate. Patients were excluded if they were too cognitively impaired to complete study procedures per the treating clinician and/or endorsed active suicidal ideation on study screening measures. Patients who endorsed suicidal ideation were evaluated by a mental health clinician and referred to the appropriate level of care. The analytic sample was restricted to patients with known baseline treatment status who completed all measures across time and did not switch treatments over the course of the study.

Informed consent was conducted over the telephone by trained study staff, consistent with IRB-approved procedures. Consented patients were sent an email that included a link to baseline measures. This email was sent every four months for a total of four surveys. Each survey required 35–45 minutes to complete. Participants received $10 for each completed survey. Surveys were administered using REDCap, a secure HIPAA-compliant data management system.

Measures

Demographic and disease characteristics.

Patients reported their age, gender (male/female), race (white/other), ethnicity (Latinx/non-Latinx), education (college degree or less/post-graduate), and partner status (partnered/other) on baseline survey measures. Disease characteristics were extracted from the medical record by trained research staff and included cancer type (CLL/other) and the ECOG Performance Status scale which ranges from 0 (Fully Active) to 5 (Dead).

Treatment status.

Patients reported their current treatment status with a single item, “How would you describe your current cancer management plan?” Patients were dichotomized into those whose oncologists were watching the cancer at baseline (active surveillance) and those receiving cancer-directed therapy.

Distress.

Distress was assessed at all timepoints with the Hospital Anxiety and Depression Scale (HADS), a 14-item self-report measure.^{18, 19} Each item is rated on a 0–3 scale; item scores are summed with higher scores indicating greater distress. The HADS has been evaluated extensively in cancer patients²⁰ and is psychometrically sound.²¹

Quality of life.

Quality of life was assessed at all time points with the 42-item Functional Assessment of Cancer Therapy – Lymphoma, V4 (FACT-Lym).²² Each item is rated on a five-point scale from “not at all” (0) to “very much” (4) with higher scores indicating better quality of life. A total score and subscale scores for Physical Well-Being, Social/Family Well-Being, Emotional Well-Being, Functional Well-Being, Lymphoma-specific issues are calculated.

Statistical Analyses

Descriptive statistics were used to report the demographic and disease characteristics of study participants. Fisher’s exact test and t-tests were used to examine demographic and disease differences between patients receiving different treatments. Score changes between month 12 and baseline distress and quality of life were compared by baseline treatment status. Mixed-effect models were also used to compare overall differences in distress and quality of life between treatment status over time, accounting for missing values. Statistical tests were two-sided, and p-values of <0.05 indicated statistical significance. All analyses were performed in statistical software SAS Version 9.4 (SAS Institute, Cary, NC).

RESULTS

The sample consisted of 64 patients with known baseline treatment status who did not change treatments over the course of the study (Table 1). The average age of the sample was 60.8 years (SD=10.4). Approximately half of the sample was male (n=35, 54.7%). The sample was primarily white (n=62, 96.9%), non-Latinx (n=61, 95.3%), partnered (n=51, 81.0%), and highly educated (post- graduate: n=36, 56.3%). Regarding disease characteristics, half of the sample was diagnosed with CLL (n=36, 59.0%) and the majority were under active surveillance (n=54, 84.4%) with good performance status (ECOG=0: n=36, 60.0%) and low levels of distress (M=7.57, SD=6.39) at baseline. Most of the sample had not accessed mental health services at baseline (n=62, 83.8%). Patients under surveillance and in cancer-directed treatment did not differ on demographic or clinical characteristics.

Table 1.

Baseline characteristics (n=64)

		Treatment status
Variable	Total	Active treatment	Surveillance	P 1
Gender, N (%)
Female	29 (45.3)	6 (60.0)	23 (42.6)	0.4910[F]
Male	35 (54.7)	4 (40.0)	31 (57.4)
Age, Mean (SD)	60.84 (10.38)	60.70 (11.97)	60.87 (10.17)	0.9636[T]
Race, N (%)
Other	2 (3.1)	0 (0.0)	2 (3.7)	1.0000[F]
White	62 (96.9)	10 (100)	52 (96.3)
Ethnicity, N (%)
Latinx	3 (4.7)	1 (10.0)	2 (3.7)	0.4047[F]
non-Latinx	61 (95.3)	9 (90.0)	52 (96.3)
Partner status, N (%)
Other	12 (19.0)	4 (40.0)	8 (15.1)	0.0862[F]
Married/partnered	51 (81.0)	6 (60.0)	45 (84.9)
Education, N (%)
College degree or less	28 (43.8)	6 (60.0)	22 (40.7)	0.3116[F]
Post graduate	36 (56.3)	4 (40.0)	32 (59.3)
Cancer Type, N (%)
CLL	36 (59.0)	4 (44.4)	32 (61.5)	0.4667[F]
Other	25 (41.0)	5 (55.6)	20 (38.5)
ECOG, N (%)
0	36 (60.0)	3 (33.3)	33 (64.7)	0.1774[F]
1	20 (33.3)	5 (55.6)	15 (29.4)
2	4 (6.7)	1 (11.1)	3 (5.9)

Note: This report only uses non-missing values in both variables (pairwise deletion) in the two-way table.

¹P values obtained from the statistical tests:

^{[F] –}Fisher’s exact test;

^{[T] -}T-test (equal variances)

^*P<.05;

^**P<.01.

Descriptive statistics for distress and quality of life at each time point are included in Table 2. Distress decreased at 12 months in patients in surveillance (mean change at 12months=−.33, SD=2.52) and in active treatment (mean change=−.50, SD=3.52; Table 3). Relative to patients receiving cancer-directed treatment, the change in distress over time in patients under active surveillance is faster (change difference =.14/month) but this difference was not statistically significant (p=0.31).

Table 2.

Distress and quality of life scores across time by treatment status (n=64)

Variable	Baseline	Four months	Eight months	Twelve months
HADS Total, Mean (SD)
Active treatment	6.90 (4.86)	3.67 (2.73)	3.00 (4.06)	2.00 (1.00)
Surveillance	8.06 (6.68)	7.13 (6.43)	7.25 (6.32)	7.58 (6.36)
Total	7.87 (6.39)	6.67 (6.16)	6.72 (6.21)	7.11 (6.29)
FACT Total, Mean (SD)
Active treatment	125.82 (18.07)	148.28 (11.42)	137.21 (21.47)	148.17 (11.18)
Surveillance	134.53 (20.69)	136.20 (22.38)	133.85 (25.42)	132.65 (24.52)
Total	133.08 (20.40)	137.81 (21.55)	134.29 (24.70)	133.94 (24.00)
FACT Physical, Mean (SD)
Active treatment	22.90 (4.72)	24.78 (3.19)	23.77 (5.24)	27.67 (0.58)
Surveillance	26.38 (3.47)	26.23 (3.95)	26.10 (3.88)	26.18 (3.92)
Total	25.81 (3.88)	26.03 (3.86)	25.81 (4.07)	26.31 (3.78)
FACT Social, Mean (SD)
Active treatment	18.05 (8.41)	25.25 (3.45)	23.44 (2.44)	23.50 (5.07)
Surveillance	19.46 (6.61)	19.99 (5.99)	19.43 (6.55)	18.10 (6.58)
Total	19.23 (6.88)	20.69 (5.97)	19.94 (6.30)	18.55 (6.58)
FACT Emotional, Mean (SD)
Active treatment	18.80 (3.29)	22.67 (1.37)	20.20 (1.30)	20.00 (2.00)
Surveillance	16.96 (4.49)	17.72 (4.63)	18.00 (4.29)	17.82 (4.31)
Total	17.26 (4.34)	18.38 (4.65)	18.28 (4.09)	18.00 (4.20)
FACT Functional, Mean (SD)
Active treatment	18.17 (7.69)	24.30 (2.74)	19.40 (11.17)	22.00 (5.57)
Surveillance	21.48 (5.49)	22.19 (5.35)	20.69 (5.85)	20.87 (5.94)
Total	20.93 (5.96)	22.47 (5.11)	20.52 (6.56)	20.96 (5.85)
FACT Lymphoma, Mean (SD)
Active treatment	47.90 (5.67)	51.29 (8.73)	50.40 (13.48)	55.00 (3.46)
Surveillance	49.66 (8.55)	50.08 (8.81)	50.10 (9.31)	49.68 (8.90)
Total	49.36 (8.13)	50.24 (8.71)	50.14 (9.71)	50.12 (8.68)

Note: This report only uses non-missing values in both variables (pairwise deletion) in the two-way table.

Table 3.

Change scores between month 12 and baseline (n=64)

		Treatment status
Variable	Total	Active treatment	Surveillance	P 1
HADS Total, Mean change (SD)	−0.49 (3.42)	−0.33 (2.52)	−0.50 (3.52)	0.9370[T]
FACT Total, Mean change (SD)	−1.23 (11.34)	18.22 (14.53)	−3.06 (9.34)	0.001**[T]
FACT Physical, Mean change (SD)	0.03 (1.38)	1.67 (1.15)	−0.12 (1.31)	0.03*[T]
FACT Social, Mean change (SD)	−1.26 (7.32)	9.00 (8.19)	−2.22 (6.58)	0.009**[T]
FACT Emotional, Mean change (SD)	0.43 (2.85)	−2.00 (3.46)	0.66 (2.74)	0.1246[T]
FACT Functional, Mean change (SD)	−0.73 (4.72)	6.56 (8.67)	−1.42 (3.74)	0.004**[T]
FACT Lymphoma, Mean change (SD)	0.30 (3.88)	3.00 (4.58)	0.05 (3.79)	0.2123[T]

Note: This report only uses non-missing values in both variables (pairwise deletion) in the two-way table.

¹P values obtained from the statistical tests:

^{[F] –}Fisher’s exact test;

^{[T] -}T-test (equal variances)

^*P<.05;

^**P<.01.

Total quality of life increased over time in patients receiving cancer-directed treatment (mean change at 12 months=18.22, SD=14.53) and decreased in patients under active surveillance (mean change at 12 months =−3.06, SD=9.34; Table 3). In mixed effect modeling, the change of quality of life over time in patients under surveillance is slower relative to patients receiving cancer-directed treatment (change difference=−1.26, SE=.46), a statistically significant difference (p=.008). Regarding quality of life subscales, social quality of life increased over time in patients in treatment (mean change at 12 months=9.00, SD=8.19) and decreased in patients in active surveillance (mean change at 12 months=−2.22, SD=6.58; Table 3). Relative to patients in cancer-directed treatment, the change in social quality of life over time in patients under surveillance is slower (change difference=−.57, SE=.23, p=.02). Similarly, functional quality of life increased over time in patients receiving cancer-directed treatment (mean change at 12 months=6.56, SD=8.67) and decreased over time in patients under active surveillance (mean change at 12 months=−1.42, SD=3.74; Table 3). Relative to patients in treatment, the change in functional quality of life over time in patients under surveillance is slower (change difference=−.33, SE=.14, p=.02). Relative differences in change over time between patients in treatment and under surveillance were not statistically different for physical quality of life (change difference=−.22, SE=.14, p=.13), emotional quality of life (change difference=.10, SE=.13, p=.45), or lymphoma-specific quality of life (change difference=−.20, SE=.22, p=.37).

DISCUSSION

The purpose of this study was to examine change in distress and quality of life over the first-year post-diagnosis in patients with indolent NHL/CLL receiving cancer-directed treatment versus active surveillance. Relative to patients in treatment, patients under surveillance had decreases in total, social, and functional quality of life over the 12-month period. However, it is important to note that, while differences in the rate of change across groups reached statistical significance, the observed changes in quality of life within each treatment group were often small with large standard deviations, suggesting that the observed changes in quality of life are not precise estimates. Despite this, these findings suggest that active surveillance may have negative implications for patient quality of life, despite that one goal of active surveillance is to minimize the impact of treatment (e.g., appointments, toxicities) on quality of life.²

Patients receiving cancer-directed treatment reported an increase in social well-being over the 12-month period while patients under surveillance reported a decrease over time. The rate of change in social quality of life was slower in patients in active surveillance relative to patients receiving cancer directed therapy. This finding is consistent with prior research¹⁶ and suggests that interpersonal mechanisms may explain the relationship between treatment status and quality of life over the first-year post-diagnosis. Friends and family may rally around a patient immediately following the diagnosis, resulting in high social well-being. For patients undergoing active treatment, this support may continue and even increase over time due to the need for practical (e.g., transportation to appointments) and emotional support during treatment. In addition, the impact of cancer on patients in active treatment may be more visible to loved ones, resulting in more demonstrations of support. Patients in active surveillance may be also experiencing the emotional burden of a cancer diagnosis but receive less support because the burden is less visible to loved ones. Research indicates that partners cope with hematologic malignancies as a dyad and that the coping style of each partner has implications for the individual and other dyad member.²³ Therefore, treating the patient and their primary caregiver as a dyad may benefit the quality of life of both individuals. Further, educating loved ones on the needs of patients under surveillance and supporting patients in the communication of their needs to others may help loved ones provide needed support to patients under surveillance. In addition, providing loved ones with psychosocial resources is important to ensuring their ongoing well-being as they manage the stress of caring for a patient with NHL/CLL.

As with social quality of life, patients in active treatment reported an increase in functional well-being over the first-year post-diagnosis while patients in active surveillance reported a decrease. The rate of change in functional quality of life was slower in patients in active surveillance relative to patients receiving cancer directed therapy. In prior studies, the functional well-being subscale performed similarly to the physical well-being subscale.^{24, 25} However, the change in physical well-being of patients under surveillance relative to patients in active treatment was not statistically significant in this study. The physical well-being subscale of the FACT-Lym focuses strictly on physical symptoms such as nausea and pain. The functional well-being subscale taps into physical function with items such as, “I am able to work (include work at home)” but also assesses psychological constructs such as patients’ ability to enjoy life and the degree to which they find their work fulfilling. Patients under surveillance may experience declines in physical function but the impact of these changes on their experience of their lives may be the factor differentiating them from patients in cancer-directed treatment.

Total quality of life worsened more over time in patients under active surveillance than in patients receiving cancer-directed treatment and the change in quality of life was slower in patients in active surveillance relative to patients receiving cancer directed therapy. This finding is concerning given that a primary goal of active surveillance is to delay the impact of cancer treatment on patients’ quality of life. Assessing quality of life over time in indolent NHL/CLL patients may be important,²⁶ particularly among those under surveillance to identify patients with worsening quality of life. Telephone or electronic delivery of these assessments may be necessary for patients in active surveillance who may have fewer appointments. Given that maximizing quality of life is a primary outcome of active surveillance, these assessments are essential to ensuring patient needs are met.

Patients’ distress regarding “doing nothing” to treat a new diagnosis may influence their treatment preferences. For example, anxiety in older prostate cancer patients was associated with earlier initiation of androgen deprivation therapy despite lack of evidence for a survival benefit and potential negative impact on quality of life.²⁷ However, cancer-directed treatment is not the safest or most targeted strategy for improving patient quality of life,²⁸ particularly when social and psychological factors are driving worsening quality of life as suggested in this and prior research.¹⁶ Rather, patients under surveillance may benefit from receipt of psychosocial services to help them adjust to their diagnosis and live meaningfully with cancer.^{9, 28} Prior research points to potential psychotherapy targets that may improve quality of life. For example, NHL/CLL survivors’ perceptions of their cancer experience as positive or negative impact their quality of life over time.^{15, 29} Avoidant coping strategies are also associated with poor quality of life in NHL/CLL patients.¹⁵ Other potential psychotherapy targets associated with quality of life in patients with hematologic malignancies include patients’ sense of coherence, self-esteem and health locus of control.³⁰ Psychosocial resources focused on these factors may help mitigate the psychological effects of active surveillance on quality of life. As previously stated, including patients’ loved ones in psychosocial services may address the declines in social well-being observed in this study.

Study strengths include longitudinal data collection and the comparison of patients receiving cancer-directed treatment to those under surveillance. Further, prior research on the psychological well-being of patients in active surveillance is limited to a single study, leaving the relationship between active surveillance and psychologist well-being largely unexamined. Limitations to this study include the observational design; patients were not randomized to treatment or surveillance. While the treatment groups did not differ in demographic or disease characteristics assessed in this study, the groups may have differed in unidentified ways that impacted quality of life. In prior research in patient with NHL and Hodgkin’s lymphoma, younger age, educational level, employment, male gender, earlier stage disease, not having co-morbid illnesses, and adequate exercise levels were associated with quality of life.¹² However, the observational nature of this study allowed for examination of differences in quality of life in the context of routine clinical care.

Additional limitations of this study include that it was conducted at a single center in an urban setting with a largely white and highly educated sample. In addition, approximately half of the sample was diagnosed with CLL and most patients had not initiated cancer treatment at baseline. Examining differences in quality of life by disease type will inform tailored strategies for maximizing and maintaining quality of life based on patients’ diagnosis. Further, due to the small number of patients receiving treatment at baseline, we were unable to examine group differences by disease stage or aggressiveness. All patients in the study had a new diagnosis of lymphoma in the past six months and the treatment groups did not differ in performance status. However, patients undergoing treatment may have had disease-related symptoms that were reduced with treatment, thereby improving their quality of life. Additional studies with larger samples are needed to examine the relationship between disease and treatment characteristics and quality of life over time. Patients were also required to have a working email address and internet, excluding patients without access to these resources. These sample characteristics limit the generalizability of the findings to other populations and settings. Finally, the sample size was small which may have contributed to large standard deviations that reduce the precision of the reported changes in quality of life. Larger longitudinal multi-site studies with more diverse samples are needed to replicate these findings and examine these relationships across different settings and patient characteristics and populations.³¹

Conclusion

The results of this study indicate that indolent NHL/CLL patients under active surveillance may experience decreases in quality of life over the first-year post-diagnosis relative to patients receiving cancer-directed therapy, particularly in domains related to their social well-being and psychological adjustment to illness. Psychosocial services that support patients’ ability to adapt to their illness, obtain needed support from others, and identify strategies to live meaningfully while under surveillance may prevent reductions in quality of life over time in these patients. Including patients’ loved ones in these psychosocial services may help caregivers understand the patient’s experience and provide support even before cancer-directed treatment is initiated. Greater integration of these psychosocial services into cancer care may advance the goal of active surveillance to minimize the impact of an indolent NHL/CLL diagnosis and treatment on patient quality of life.

CLINICAL PRACTICE POINTS.

Newly diagnosed indolent non-Hodgkin lymphoma and chronic lymphocytic leukemia (NHL/CLL) patients are often monitored for disease progression rather than started on active treatment in order to delay treatment side effects and the disruption of cancer treatment on patients’ daily life. While active monitoring (i.e., surveillance) may delay treatment effects, receiving a cancer diagnosis and then being told to “do nothing” may impact patients’ distress and quality of life. Research on the relationship between treatment type and quality of life is mixed. Total quality of life and physical, social and functional quality of life improved over time in patients receiving cancer-directed treatment and decreased over time in patients under active surveillance. Relative to patients in active treatment, overall, social, and functional quality of life in patients under surveillance changed more slowly over time. Psychosocial services that support patients’ ability to adapt to their illness, obtain needed support from others, and identify strategies to live meaningfully while under surveillance may prevent reductions in quality of life over time in these patients. Including patients’ loved ones in these psychosocial services may help caregivers understand the patient’s experience and provide support even before cancer-directed treatment is initiated. Greater integration of these psychosocial services into cancer care may advance the goal of active surveillance to minimize the impact of an indolent NHL/CLL diagnosis and treatment on patient quality of life.