QOL in Long Term Survivors of Breast Cancer

Study characteristics. In total, 16 studies met our search criteria for breast cancer, all published after 1998. The studies are described in Table 1 and include our study,32 which will be discussed in greater detail following the general review. Quality of life was a primary outcome in all studies. Of the 16, five studies compared the QOL between breast cancer survivors and healthy or normal controls.4,41-44 Two of five also compared QOL outcomes between survivors who have experienced a cancer recurrence to those who have not.4,43 Three of the 16 studies compared QOL between breast cancer survivors receiving different types of treatment.2,45,46 Two of the 16 investigated the QOL between breast cancer survivors diagnosed at different ages47,48; another two studies compared QOL at time of diagnosis and follow-up32,49; and two more examined the impact of treatment on QOL.50,51 One study looked specifically at the role of ethnicity in QOL outcomes,52 while the final study examined the impact of length of time since diagnosis on QOL.53

Quality of life. In most studies, breast cancer survivors reported a good overall QOL,32,43,49,51,52 with two of the studies reporting QOL comparable to healthy controls.4,44 Generally, the longer the time since diagnosis, the better the overall QOL reported,32,48,52 although a few studies cited no change46,49 or decreases in QOL53 over time. Studies comparing QOL between survivors with and without recurring cancers found that those with recurring disease reported worse QOL in some, but not all domains.4,43,49 With regard to treatment type, some studies report no differences in long-term QOL by treatment type,45,46,51 while others find significant differences.2,49 Although univariate analyses revealed that African American women reported lower mean QOL scores than Euro-American women, differences disappeared after multivariate analyses.52 Ganz,51 however, reports better QOL outcomes among African American compared to Euro-American women. In the studies reviewed, women reported various concerns in each QOL domain, physical, psychological, social, and spiritual. Findings are reported below according to QOL domains.

Physical quality of life. Eleven of the 16 studies discussed physical domain QOL outcomes for long-term survivors.2,4,32,41,43,46-51 Generally, survivors report lower physical domain QOL than healthy controls and poorer physical functioning.4,41,43,49 Arm pain, including swelling, loss of sensation, weakness, and stiffness, are common.4,32,48,50,51 Survivors also report fatigue,2,46 with one study finding that younger survivors report the lowest levels of vitality.51 Physical problems associated with treatment induced menopause are also common.2,32 One study shows that physical functioning was predicted by age at diagnosis,48 while another found that older age in general is related to worse physical domain QOL.47 Another study found that physical health was most affected among women who were both diagnosed with lymphoma and treated with chemotherapy.2

Psychological quality of life. Eleven of the 16 studies discussed psychological domain QOL outcomes for long-term survivors.4,32,41,44,45,47-51,53 Although survivors and controls tend to report similar QOL in most psychological domains,4 studies report significant psychological concerns among breast cancer survivors including depression and symptoms of Posttraumatic Stress Disorder.32,41,50,53 Survivors report being overly stressed and worried about the future, and having little control over the world.32,44

Table 1. Long-Term Breast Cancer Studies Reviewed

Study

Sample size and type

Time since dx/ tx

Instruments

Methods (C/L)*

Ahels et al?

549 survivors

Mean 10 years

• Quality of Life Cancer Survivors Tool (QOL-CS)

C

Amir and Ramati41

39 survivors 39 controls

5 years

• Posttraumatic Stress Disorder (PTSD)

• World Health Organization Quality of Life Assessment (WHOQOL-Bref)

• Emotional Distress

C

Ashing-Giwa et al52

278 survivors

• Cancer Rehabilitation and Evaluation Survey

• Ladder of Life Score

• The Life Stress Scale

C

Bloom et al32

185 survivors

5 years

• SF-36

L

Broeckel et al42

58 survivors 61 controls

Mean 7.65 years

• The Center for Epidemiological Studies, Depression Scale (CES-D)

• MOS Marital Functioning Scale

• Multidimensional Fatigue Symptom Inventory (MFSI)

• Menopausal Symptom Checklist (MSC)

C

Cimprich et alP

105 survivors

5 years

• The QOL-Cancer Survivors Instrument

C

Dorval et al.4

124 survivors 262 controls

Mean 8.8 years

• Physical Health, Functional Status, Psychological Distress (PSI), Social Functioning (MOS Social Support Survey) etc.

• Locke-Wallace Marital Adjustment Test

C

Dorval et al.45

124 survivors

8 years

• Psychiatric Symptom Index (PSI)

L

Fehlauer et al,48

370 survivors

Median 116 months

• EORTC Quality of Life Questionnaire

• EORTC Breast Cancer Module Questionnaire (EORTC QLQ-BR23)

C

Ganz et al.51

577 survivors

• Positive and Negative Affect Scale (PANAS)

• Sexual Activity Questionnaire (SAQ)

• Ladder of Life Score

763 survivors

Mean 6.3 years

Helgeson and Tomich43 267 survivors Mean 5.5 years

187 controls

Holzner et aLss 87 survivors Mean 4.7

Joly etal46 119 survivors 9.6 years

Kornblith et al.50 153 survivors Median 20 years

Tomich and Helgeson44 164 survivors 5.5 years

164 controls

*C = Cross sectional; L = Longitudinal.

SF-36

Ladder of Life Score MOS Social Support Survey CES-D PANAS

The Revised Dyadic Adjustment Scale (RDAS) SAQ

Cancer Rehabilitation and Evaluation Survey

Breast Cancer Prevention Trial (BCPT) Symptom Checklist

SF-36 L

PANAS

MFSI

Brief Symptom Inventory (BSI) Dyadic Adjustment Scale (DAS) Derogatis Sexual Functioning Inventory Functional Assessment of Chronic Illness Therapy Impact of Events Scale

EORTC QLQ-C30 C

FACT-B

EORTC QLQ-BR23 BSI

EORTC QLQ-C30

Posttraumatic Stress Disorder Checklist-Civilian Conditioned Nausea and Vomiting MOS Social Support Survey

Functional Assessment of Chronic Illness Therapy (Spiritual Well-being)

SF-36

PANAS

Age seems to play a role in a women's psychological reaction to cancer. The poorest mental health outcomes are often found among the youngest survivors.47,51 Women diagnosed during middle age often report better psychological outcomes and greater general happiness.47 One study finds that older survivors report less impact of cancer on life plans than younger survivors,49 while another study finds that older women report greater uncertainty about the future.47 An additional study found that age at diagnosis modified levels of psychological distress related to type of treatment, finding that for women younger than 50 undergoing partial mastectomy was protective for psychological distress, while for women older than 50 partial mastectomy was associated with high levels of distress.45 Better mental QOL is associated with fewer chronic conditions, emotional support, feelings of personal control, sense of purpose, fewer physical symptoms, and greater dissatisfaction with medical care.32,44,50

Social quality of life: Twelve of the 16 studies discussed social domain QOL outcomes for long-term survivors.2,4,32,42,45-51,53 Concerns with sexual functioning and satisfaction are the most common issues experienced by survivors, noted in 11 of the 12 studies. Concerns include lack of interest is sexual activity, inability to relax and enjoy sex, difficulty being aroused, difficulty achieving orgasm, and vaginal dryness. One study found that vaginal dryness mediated differences in sexual functioning between survivors and controls.42 Hormonal and menopausal symptoms are also related to problems with sexual functioning. No changes were found in sexual functioning over time. Other social QOL issues include reduced role functioning, at home, at work and during leisure activities.2,53 Both sexual and role functioning concerns are aggravated among women who received systemic chemotherapy.2,49

Spiritual quality of life: Only four of the 16 studies discussed spiritual domain QOL outcomes for long-term survivors.32,43,44,47 One suggests that survivors report more faith than controls,43 while another reports no differences in spirituality between survivors and controls.44 Cimprich et al. reported that older women report fewer positive changes as a result of their cancer diagnosis than did younger women.47

5.2. QOL in Long-Term Survivors of Hodgkin's Disease

Study characteristics: In total, five articles, representing four unique studies, met our search criteria for Hodgkin's disease, all published after 1998. Interestingly, all studies were conducted in Europe. The articles are described in Table 2. All studies were cross-sectional and compared Hodgkin's survivors to normal54-57 or healthy controls.58 In the studies reviewed, survivors reported various concerns in each QOL domain, physical, psychological, social, and spiritual. Findings are reported below according to QOL domains.

Quality of life: In two of the four studies survivors reported worse overall QOL outcomes compared to controls,54,55 while two reported no significant differences overall between groups.56,57 Three of the four studies also QOL compared QOL among survivors receiving different types of primary treatments, finding no significant differences between groups.54,55,58 Two of the four studies examined differences in QOL due to time elapsed since diagnosis and found no differences 54,55. Three of the four studies reported that quality of outcomes were worse among older survivors 54,55,58. One of the four studies reported no differences between men and women,55

while three others found that women experienced worse physical QOL outcomes than men.54,55,58

Table 2. Hodgkin's Studies Reviewed

Study

Sample size and type

Time since dx/ tx

Instruments

Methods (C/L)*

Gil-Fernandez it al.58

46 survivors 46 controls

• Hospital Anxiety and Depression (HAD) Scale

C

Loge et ai54 Ruffer et al.55

459 survivors 2323 controls 836 survivors 935 controls

Mean 12.2 years Median 5.2 years

• LSQ

C C

Wettergren et al.57

121 survivors 236 controls

Mean 14 years

• The Schedule for the Evaluation of the Individual Quality of Life-Direct Weighting (SEIQoL-DW)

• Sense of Coherence (SOC) Scale

C

Wettergren et al.56

121 survivors 236 controls

Mean 14 years

• SEIQoL-DW

C

*C = Cross sectional; L = Longitudinal.

*C = Cross sectional; L = Longitudinal.

Physical quality of life: All four studies reported physical QOL outcomes. One of the five found that survivors reported worse QOL scores on all scales, including general health perceptions, physical functioning, role limitations, and vitality, after controlling for age, gender, and education.54 Another reported that general and physical fatigue was higher among survivors than controls.55 Increases in reported fatigue were related to systemic symptoms, relapse, and prevalence of tumor disease in the survivor's family.55 Two of the four studies found that even though survivors and controls reported similar overall QOL outcomes, survivors had poorer physical health perceptions and considered themselves to be in poorer health than controls.56,58 In one of the two studies, survivors reported lower physical functioning and worse dysnea symptoms.58 Two of the four studies found that those with more advanced stage of disease had worse QOL outcomes, especially in regard to physical functioning, bodily pain, vitality, and role limitations.54,56,57

Psychological quality of life: Three of the four studies reported psychological QOL outcomes. One study reported higher rates of mental fatigue and reduced motivation among survivors than controls.55 Worse mental fatigue was associated with older age, systematic symptoms, a history of tumor disease in the survivor's family, and the number of tumor disease occurrences in the survivor's family.55 Although no significant differences in anxiety or depression were found between survivors and controls, one study reported that the anxiety that did exist among survivors was more prevalent among women and those diagnosed with B symptoms than other categories of survivors.58 Depression was more prevalent among survivors over age 45 at time of study.58 The third study reported that survivors who rated their financial situation as poor were more likely to rate their mental health as poor when compared to controls.57

Social quality of life: One of two studies that reported social QOL outcomes found that survivors reported worse social functioning than controls after controlling for age, gender, and education.54 The second study found that although survivors perceived their general state ofhealth and overall QOL similarly to controls, survivors reported worse social functioning and more economic difficulties than controls.58

Spiritual quality of life: One study reported that survivors were likely to note changes in life perspective due to the illness experience.56 No other aspects of spirituality were reported.

5.3. QOL in Long-Term Survivors of Prostate Cancer

Study characteristics: In total, 12 studies met our search criteria for long-term QOL issues among prostate cancer survivors. The studies are described in Table 3. Quality of life was a primary outcome in all studies. Of the 12, two studies compared the QOL between prostate cancer survivors and normal controls,59,60 while a third study compared the QOL of prostate survivors and their partners.61 Seven of the 12 studies compared QOL outcomes between prostate survivors receiving different primary treatments.59-65 Ten of the 12 studies examined changes in QOL outcomes over time,59-68 while the remaining two examined QOL at one point in time.69,70 Two of the 12 studies looked specifically at the role of ethnicity in QOL outcomes.63,70

Quality of life: Overall, issues of urinary, sexual, and bowel dysfunction remain problematic for prostate cancer over the long term. The two studies that compared long-term QOL outcomes between survivors and controls, survivors reported worse problems with urinary and sexual functioning than controls.59,60 However, in terms of general QOL, results were similar for both groups.59,60 Of the studies examining changes in QOL over time, all but one67 reported decreases in sexual functioning. Three studies also reported decreases in urinary function across treatment groups.60,61,66 Two studies reported decreases in physical functioning and vitality over time.61,67

All seven studies comparing long-term QOL outcomes among men receiving different primary treatments detected significant health-related QOL differences.59-65 Two of the seven, however, reported no significant difference among treatment groups in regard to general QOL.59,61 Although both of the studies examining the role of ethnicity on QOL outcomes found some differences between African American and Euro-American men, there is disagreement about the specific nature of the differences found.63,70 Both studies, however, report that African American men were more bothered by their level of sexual functioning than Euro-American men.63,70 In the studies reviewed, men reported various QOL concerns. Findings are reported below according to four QOL domains.

Physical quality of life: All 12 studies discussed physical domain QOL outcomes for long-term survivors.59-70 Generally, long-term survivors experience physical problems related to sexual, urinary, and bowel dysfunction. Men experience problems with sexual functioning (e.g., obtaining and maintaining erections)59-62,64-68,70 and with urinary functioning (e.g., leakage or incontinence).59-61,64-66,68 Most studies report that severity of specific problems varies according to primary treatment. For example, the findings with regard to bowel functioning vary according to type of primary treatment.59,62,64,65 One study found that African American men scored lower on the physical component of the SF-36 than Euro-American men.70 Although one study found that 42% of survivors reported experiencing moderate pain or discomfort in the week prior to the study,69 others reported no differences in the pain or vitality components of the SF-36 between survivors and controls60 or among survivors receiving different treatments.62,64

Table 3. Prostate Cancer Studies Reviewed

Sample size

Time since

Methods

Study

and type

dx/ tx

Instruments

(C/L)*

Dalkin et al.66

1995.289

Up to 5 years

UCLA Prostate Cancer

L

survivors 1999.

Index (UCLA-PCI)

292 survivors

129 controls

Descazeaud et al.67

102 survivors

Mean 48 months

UCLA-PCI

L

SF-36

Galbraith et al.61

192 survivors

2.5-5.5 years

QOL

L

SF-36

Southwest Oncology

Group Prostate

Treatment-Specific

Symptoms Measure

DAS

Hoffman et al.60

210 survivors 421

5 years

SF-36

L

controls

UCLA-PCI

Johnson et al.6

1433 survivors

Up to 60 months

UCLA-PCI

L

with radical

prostatectomy

642 survivors

with

radiotherapy

Korfage et al.64

314 survivors

Mean = 52 months

UCLA-PCI

L

SF-36

Euro Qol (EQ-5D)

Sexual Functioning (12

Dutch Single Items)

McCammon et al.65

460 survivors

Range 1-12 years

QOL

C

for surgical group

1-22 years for

irradiated group

Miller et als9

709 survivors

4-8 years

SF-12

L

Prostate Cancer-Specific

QOL (EPIC-26)

Penson et al.68

1288 survivors

Up to 60 months

UCLA-PCI

L

Potosky et al.62

1187 survivors

5 years

General HRQOL

L

Disease-specific HRQOL

SF-36

Sandbloom et al.69

1243 survivors

Mean 5.7 years

Euro Qol

C

BPI

Jenkins et al?°

1112 White

Mean 4.3 years

UCLA-PCI

C

118 African

International Index of

American

Erectile Function

survivors

Sexual Self-schema

Scale-Male Version

*C = Cross sectional; L = Longitudinal.

*C = Cross sectional; L = Longitudinal.

Psychological quality of life: Seven of the 12 articles discussed psychological domain QOL outcomes.60-62,64,65,67,70 With regard to the mental health component of QOL, some studies report no differences in SF-36 measures between survivors and controls60 or among survivors receiving different treatments.62,64 One study found that African American men scored lower on the mental component of the SF-36 than Euro-American men.70

With regard to distress experienced due to specific symptoms, one study reported that survivors reporting urinary dysfunction report higher levels of distress.62 Another study did not find urinary bother to differ among men with different primary treatments.65 One study found that although survivors reported being significantly concerned about sexual functioning, few sought treatment.61 Another cited that even though African American men reported similar or better sexual functioning than Euro-American men,63,70 the former report higher levels of distress due to sexual functioning.63,70 African American men, however, were also found to be more likely to seek help for problems with sexual functioning than Euro-American

men.

Social quality of life: Seven of the 12 studies discussed social domain QOL outcomes.60-65,67 In general, studies found no differences in the physical or emotional role components of the SF-36 between survivors and controls60 or among survivors receiving different treatments.62,64 One study also found no significant changes in men's physical or emotional role limitations over time.61 One study reported that although levels of sexual dysfunction are high among most prostate cancer survivors, those who underwent radical prostatectomy experience greater stress on their relationships.65

Spiritual quality of life: None of the studies reviewed reported spiritual QOL outcomes from prostate cancer survivors.

Exhibit 1

Major Themes from Literature Review

• Physical domain QOL is the most frequently measured indicator of QOL

• Spiritual domain QOL is the least frequently measured indictor of QOL

• Prostate cancer survivors have worse physical domain long-term QOL than breast cancer and Hodgkin's disease survivors

• Social support appears to decline for all survivor groups

• QOL improves with time since diagnosis for breast cancer survivors, but tends to decrease over time for prostate cancer survivors

• QOL varies according to treatment type received for all survivor groups

• QOL varies according to age for all survivor groups

• Social domain QOL is most commonly impacted by sexual function, especially in the case of breast and prostate cancer survivors

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