A Pilot Study: Evaluation of a Psychosocial Program for Women with Gynecological Cancers INTRODUCTION

A Pilot Study:Evaluation of a Psychosocial Program

for Women with Gynecological CancersEllen G. Levine, PhD, MPH

Barbara Silver, RNC, MS, WHNP, FNP

ABSTRACT. Ovarian cancer is the fourth highest cause of cancer deathsin the US. Psychosocial issues may be prevalent among these women.This study examined the efficacy of a gynecological cancer resource pro-gram. Fifty-three women completed questionnaires over a year’s time.The women felt positively about the program, and used several of the ser-vices. The most used services were that of the center coordinator/nursepractitioner, the GYN support group, the hair consultant, and the imagerysessions. The social worker, massage therapist, and the nutritionist seem-ed to be important at the beginning of the cancer experience but not somuch at later stages. Having a nurse practitioner who could talk abouttreatment side effects, menopause, body image, sexuality, etc., was help-ful to at least half of the women. Psychological distress decreased overtime, as did quality of life. doi:10.1300/J077v25n03_05 [Article copies avail-able for a fee from The Haworth Document Delivery Service: 1-800-HAWORTH.E-mail address: <[email protected]> Website: <http://www.HaworthPress.com> © 2007 by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Gynecological cancer, quality of life, service usage,distress

Ellen G. Levine is affiliated with the Biobehavioral Research Center, San FranciscoState University, 1600 Holloway Avenue, San Francisco, CA 94132.

Barbara Silver is Founder and Coordinator, Women’s Health Resource Center,California Pacific Medical Center, P.O. Box 2278, Castro Valley, CA 94546.

Address correspondence to: Ellen G. Levine, Biobehavioral Research Center, SanFrancisco State University, 1600 Holloway Avenue, San Francisco, CA 94132 (E-mail:[email protected]).

Journal of Psychosocial Oncology, Vol. 25(3) 2007Available online at http://jpo.haworthpress.com

! 2007 by The Haworth Press, Inc. All rights reserved.doi:10.1300/J077v25n03_05 75

INTRODUCTION

Ovarian cancer is the fourth highest cause of cancer deaths in the US(American Cancer Society, 2005). The American Cancer Society esti-mated that in 2005 there would be 16,210 deaths from ovarian cancerand 12,700 deaths from other gynecological cancers in the US. Manytimes ovarian cancers are not detectable until they have spread, whichdecreases chance of survival. Therefore it is not surprising to seeanxiety and depression as a result of the cancer diagnosis. However therates of depression vary. Wenzel et al. (2002) found that only 6 percentof their sample of 49 early-stage ovarian cancer survivors (at or longerthan 5 years) were classified as being depressed. On the other handHipkins, Whitworth, Tarrier, and Jayson (2004) found that 38 percentof their sample of 63 women at the end of chemotherapy for ovariancancer were anxious and 33 percent were depressed. After 3 months, 47percent were anxious and 19 percent depressed. Kornblith and her col-leagues (2004) found that in their sample of 151 women with ovariancancer 33 percent were highly distressed, with 17 percent being highlydepressed and 22 percent highly anxious. Zabora, Brintzenhofeszoc,Curbow, Hooker, and Piantadosi (2001) compared levels of distressin 9,000 people with different cancers (only 5% were gynecologicalcancers). They found that 30 percent of the women with gynecologicalcancer were significantly distressed. Cain, Kohorn, Quinlan, Schwartz,Latimer, and Rogers (1983) surveyed 60 women with endometrial,cervical, and ovarian cancer. They also found high levels of depression,with 36 percent of the sample with moderate to severe depression.While they were less depressed than the comparison sample of de-pressed female outpatients, they were more depressed than anothernondepressed community sample. The women with cancer were signifi-cantly more impaired in work and extended family relationships thanthe community sample, but not as much as the depressed outpatients.Women with ovarian or endometrial cancer also reported more difficul-ties with work. Norton et al. (2004) used the Beck Depression Inventory(Beck, Steer, & Garbin, 1998) and the Impact of Events Scale (Wareet al., 1984) and found that almost half (48%) of their sample of 143women with ovarian cancer had no or minimal depression and 20 per-cent had high to severe depression. Again the scores for the womenwere higher than those of women with cervical or endometrial cancer aswell as the normative sample. A problem with this study is the use of theBDI. Since the BDI contains questions about physiological status, itmay over estimate depression in medical patients (e.g., Knight, 1998).

76 JOURNAL OF PSYCHOSOCIAL ONCOLOGY

However, 55 percent of the women in this study reported high levels ofcancer-related distress. These levels were significantly higher thanthose of the normative sample and breast cancer survivors. The majorityof the women were not using mental health services although 34 percentwere taking psychotropic medications. Seven percent of the women hadundergone individual counseling, four percent religious counseling,and 8 percent were in group therapy. Lutgendorf et al. (2002) followeda sample of 55 women with gynecological cancers for a year. Theyfound that distress was higher for women with ovarian cancer thanhealthy women, but the differences were not significant. The variationsin depression may be owing to sample sizes and measures used to mea-sure depression, but it seems clear that there is a large incidence of psy-chological distress among women with gynecological cancers.

A few studies have also looked at quality of life among women withgynecological cancers. Ersek, Ferrell, Dow, and Melancon (1997) ex-amined quality of life and psychological well-being among a sampleof 152 women with ovarian cancer. Average time since diagnosis was60 months, and only seven percent were receiving therapy. Overallquality of life was high (6 on a 10 point scale). However, the women re-ported trouble with their self-concept as a result of the cancer. They alsoreported that at the time of diagnosis and treatment they were very dis-tressed. Women with active disease had significantly lower quality oflife than those without active disease. The differences were in physical,psychological and social well-being. A subsample of 130 women alsoresponded to qualitative questions about their cancer experience. Theyreported positive changes in terms of being more appreciative of life,sense of purpose in life, and learned to “live in the moment” (p. 343).They also reported positive changes in relationships with others, improvedpsychological health and had changed to a healthier lifestyle. Problemsincluded fatigue, pain, poorer self-image, diminished sexuality, loss offertility, increased family stress, and anxiety in both the family and therespondent. Other negative emotions included uncertainty and fear ofthe future, perceived loss of control, anger, and depression. Lutgendorfand her colleagues (2002) followed 98 women with ovarian cancer for1 year. Quality of life for women with early-stage cancer was similar tothat of other cancer patients who had no symptoms of disease. Womenwith advanced ovarian cancer had significantly worse physical andfunctional well-being than those with early-stage disease. Both groupshad significant increases on emotional and functional well-being overthe year of the study. Both groups also reported significant decreases inanxiety, depression, and confusion over time as well. At the end of the

Ellen G. Levine and Barbara Silver 77

year, levels of quality of life for both groups were similar to those offully ambulatory patients.

Issues surrounding sexuality and body image are also present inwomen with gynecological cancers (Anderson, 1993; Ersek et al., 1997;Guidozzi, 1993; Steginga & Dunn, 1997). Anderson and her colleagues(1989) found that approximately a third of Stage I or II ovarian cancerpatients had some type of sexual dysfunction, although Steginga andDunn (1997) found that only 13 percent of the women in their samplereported having sexual problems. However, Cain et al. (1983) foundthat the almost half of the women in their sample (n = 29 out of 60) re-ported having satisfying sexual relations before diagnosis. However, allof those women reported that they had ceased to have intercourse afterdiagnosis. Taylor, Basen-Engquist, Shinn, and Bodurka (2004) alsofound greater sexual dysfunction among ovarian cancer patients whencompared with breast cancer patients and women without cancer. Theyhad a sample size of 232 women with ovarian cancer who were askedto complete psychosocial measures after surgical treatment. Of thesewomen, 47 percent had no or little desire for sex at that time. Forty-seven percent of the sample was in active adjuvant treatment. Womenwho were in treatment were more likely to have sexual dysfunction thanwomen who were not in treatment or had no evidence of disease at thetime of the study. Of the women who had sex in the previous month80 percent reported vaginal dryness (40% very much), 62 percent hadpain or discomfort during penetration (20% very much), 75 percent hadproblems reaching orgasm 50-90 percent of the time, with 34 percentof the women having orgasmic problems nearly always (over 90% ofthe time). There were no differences between women in treatment, notin treatment, or had no evidence of disease. Wenzel et al. (2002) foundthat only 25 percent of their sample of 49 early-stage ovarian cancer sur-vivors (at or longer than five years) reported problems with vaginal dry-ness, 37 percent had decreased libido, 28 percent decreased arousal, 13percent had problems with orgasm, and 27 percent had problems withmenopause. Only 25 percent of their sample was sexually active at thetime of assessment. Lutgendorf et al. (2002) reported that 33 percentof women with early-stage cancer and 50 percent of the women withadvanced cancer had not had sexual intercourse over the year. However,all of the women with advanced cancer and 54 percent of the womenwith early-stage disease who had an active sex life reported that theywere “quite a bit” or “very much” satisfied with their sex life.

In a more unusual study, Ferrell and her colleagues (Ferrell, Smith,Cullinane, & Melancon, 2003; Ferrell, Smith, Ervin, Itano, & Melancon,


2003) asked for the opinions of women who read a newsletter designedfor women with ovarian cancer. They received 3,566 comments, themajority about quality of life issues. Many of the women reported dis-tress associated with side effects of treatment, the re-growth of hair andreturn to daily activities helped the women to heal psychologically, andre-focus their lives.

While the literature is sparse, it suggests that women with gynecolog-ical cancers have a great deal of sexual difficulties and some depressionand anxiety. However, the majority of the studies have been cross-sectional in nature and few studies have followed women over time. Inaddition, there is not much information on what the needs of women withgynecological cancers are and whether or not they change over time. Thepurpose of the present study was to ask the following questions: (1) Whatare the needs of women with gynecological cancer at diagnosis, end oftreatment and long terms, (2) What services are utilized by these women,and (3) Are there positive changes over time in distress and quality of life?

METHODS

Women with various gynecological cancers were approached whenthey came to the Women’s Health Resource Center at a large commu-nity hospital and asked if they wanted to participate in the study. Thestudy was approved by the medical center’s Institutional ResearchBoard. Out of 75 women approached, 53 agreed to participate, and 23completed questionnaires at all of the time points, a 43 percent retentionrate. The women were asked to complete questionnaires at four timepoints: upon entry into the study, 3, 6, and 12 months later. Unfortu-nately not all participants answered all of the questions. Therefore someof the categories in the categorical data tables do not add up to 53. Theresponse rates over time were: at 3 months 64 percent, at 6 months 58percent, at 1 year 43 percent.

Measures

The measures used in this study were:

• Demographic information included age, ethnicity, smoking history,age at menopause, weight, exercise, spiritual preference, maritalstatus, sexually active, use of birth control, sexual preference, useof alternative therapies, smoking history, employment status, in-come, and mental health history. They were also asked about their


diagnosis, cancer treatment, whether they were on hormone re-placement therapy, how they heard about the program, and interestin the services offered.

• Quality of life was assessed using the Functional Assessment ofChronic Illness Therapy, Version 4 (Cella, 1997), a self-reportmeasure of quality of life designed for cancer patients. The scaleassesses seven domains common to all cancer patients: physicalwell-being, social/family well-being, emotional well-being, func-tional well-being, and spirituality, with separate additional sub-scales for different cancers that pertain to specific symptoms ofeach type of cancer.

• Mood was measured using the Profile of Mood States (McNair,Lorr, & Droppelman, 1981), which is divided into six subscales:tension-anxiety, depression-dejection, anger-hostility, fatigue-inertia,confusion-bewilderment, and vigor, with a combined total moodscore. It has been used in many studies with cancer patients (e.g.,Lutgendorf et al., 2002; Targ & Levine, 2002).

• Spiritual well-being was measured using the Functional Assess-ment of Chronic Illness Therapy-Sp-Ex (Cella, 1997; Petermanet al., 2002), which is divided into three subscales: faith/spiritualbeliefs, meaning and peace, and additional spiritual concerns (e.g.,love, hope, etc.). It has been used in studies with breast cancer pa-tients (e.g., Cotton et al., 1999; Brady et al., 1999).

The women were to rate each of the services at the center and indicateif they had used services elsewhere.

RESULTS

Demographics

The women heard about the program in various places, but mostfound out through their physician. The average age of the participantswas 53 (range 22-77 years). As seen in Table 1, the majority of thewomen were Caucasian, married, and either Catholic or Christian.Many of the women used alternative therapies, the most common beingacupuncture (11 women, 21%), Chi-Going (6 women, 11%), Chi-Gongand imagery (8 women, 13%). Other complementary therapies usedwere homeopathy (3 women, 6%), meditation (3 women, 6%), massage


(3 women, 6%), herbs (3 women, 6%), breathwork (1 woman), chanting/writing (1 woman), poetry (1 woman), and Reiki (1 woman). Most of thewomen were employed either full or part-time, and most had incomesover US$45,000.

As seen in Table 2, almost half of the women had been diagnosedwith ovarian cancer and the majority of the women had a hysterectomyperformed. At the time of entry into the study, the majority of women


TABLE 1. Demographics

Variable n %

Ethnicity*African American 1 2Asian 11 21Caucasian 35 66Latina 1 2

Spiritual preferenceChristian 10 19Catholic 10 19Buddhist 4 8Sufi 1 2Episcopalian 3 6Jewish 5 9None 8 13

Type of relationship*Married 30 57Single 7 13Divorced 9 17Widowed 4 8

Employment statusFull time 20 38Part time 10 19Not outside home 11 21

Income!15,000 3 615-29,000 6 1130-44,000 7 1345-59,000 8 15"60,000 22 42

Mean SD Range

Age 53 10.6 22-77Number of children 1 1.25 0-5Age at menopause 47 5 34-53

*Not all participants answered this item.

were due to have chemotherapy, almost 50 percent were going to haveradiation. Only nine of the women were still menstruating and the aver-age age of menopause was 47 years. While half of the women did notreport any menopausal symptoms, 30 percent did report having hotflashes, 19 percent night sweats, and 11 percent vaginal dryness. Overhalf of the women were on some type of hormone replacement therapy.


TABLE 2. Medical Information

Had Hysterectomy n %

Yes 36 68No 15 28

SymptomsHot flashes 12 30Vaginal dryness 6 11Night sweats 10 19None 27 51No answer 2 4

Hormone replacement therapy?Yes 28 53No 21 40No answer 4 8

Current diagnosisOvarian cancer 25 47Cervical cancer 9 17Breast cancer 1 2Endometrial/Uterine 15 28Fallopian tube cancer 2 4Bartholin gland cancer 1 2Peritoneal cancer 5 9

Type of surgeryOopherectomy 17 32Hysterectomy 33 62Laproscopy 1 2Other 1 2None 1 2

Chemotherapy plannedYes 44 83No 4 8Don’t know 2 4

Radiation plannedYes 10 19No 26 49Don’t know 14 26

Psychosocial

As seen in Table 3, 22 of the women (41%) reported that they hadseen a mental health professional, most commonly a psychologist. Only10 (19%) of the women were being treated for depression, however 20(38%) had taken either antidepressants, anti-anxiety, or sleep medica-tions in the past. Forty women (76%) did some form of exercise, mostcommonly walking (26%).

Interest in Center Services

In Table 4, the interest the women had in the services offered at thecenter is presented. The majority of women were interested in one ormore of the services, with desire to talk to the nurse practitioner aboutmenopause (36%) and sexual concerns (23%), to be in a support group(81%), have individual counseling (24%), talk to a nutritionist (59%),stress management (36%), imagery (28%), hair loss (43%) massagetherapy (43%), and/or use the library (43%). Few were interested in ge-netic counseling, lymphedema, pastoral care, family counseling imag-ery, or help talking to their children about their diagnosis. However,many of the women were not sure at that point what services they wereinterested in, if any. About half of the women (51%) were interested inbecoming a mentor at some point, and 43 percent were interestedin advocacy. The study did not specifically ask clients about other


TABLE 3. Psychosocial Information

n %

See/seen mental health professionalPsychologist 14 27Counselor 2 4Psychiatrist 5 10All three 1 2None 29 57

Treated for depression*Yes 10 22No 36 78

Taken antidepressants/anti-anxiety/for sleep*Yes 20 42No 27 57

*Lifetime use, not necessarily for cancer.


TABLE 4. Interest in Center Services

Issue Percent Interested orMaybe Interested

Want to talk to NP about menopauseYes 36Maybe 11

Want to talk to NP about body imageYes 17Maybe 21

Want to talk to NP about sexYes 23Maybe 24

Would like to be in a support groupYes 81Maybe 4

Would like individual counselingYes 24Maybe 6

Would like to use the libraryYes 43Maybe 2

Want to talk to a social workerYes 17Maybe 11

Want to talk to a nutritionistYes 59Maybe 4

Want to talk to someone about stress managementYes 36Maybe 8

Want to talk to someone about hair lossYes 43Maybe 6

Would like massage therapyYes 43Maybe 6

Would like imageryYes 28Maybe 6

Would like genetic counselingYes 9Maybe 0

Would like lymphedema educationYes 2Maybe 4

Would like pastoral careYes 2Maybe 8

chemotherapy side effects such as nausea, neuropathy, etc. However,for the women who were starting chemotherapy, the discussion focusedon management of treatment side effects. For the women facing surgery/radiation the discussion focused on what to expect from these treat-ments. Therefore, follow-up visits with the nurse practitioner may havefocused on one of these therapies.

Baseline Psychological Measures

At baseline the women were on average not particularly distressedalthough the ranges suggest that some women were indeed distressed(see Table 5).

Center Utilization

The use of services over the year is shown in Table 6. Satisfaction rat-ings are discussed below.

At the End of 3 Months

By the end of 3 months only 34 women returned the questionnaires.Of these women, 32 (94%) had used the services of the center while 10(29%) had used services elsewhere (see Table 7). The most popularofferings were the center coordinator/nurse practitioner, imagery, sup-port group, and hair consultant. Some of the women used services else-where. Two women went to a massage therapist, three to support groups,and one each got genetic, nutrition counseling, and stress management.One woman also used a library/boutique elsewhere.


Issue Percent Interestedor Maybe Interested

Would like family counselingYes 2Maybe 13

Becoming a patient advocateYes 43Maybe 32

Become a mentorYes 51Maybe 34

Want guidance speaking to children about diagnosis?Yes 11

The women who used the center services were most satisfied by theirinteraction with the center coordinator/nurse practitioner who receivedthe highest ratings. High ratings were also given to the hair consultant,massage therapist, GYN support group, and the imagery sessions. Leastsatisfactory were the stress management sessions, genetic counseling,lymphedema care, pastoral care, individual and/or family counseling.However it must be noted that few women used these services.


TABLE 5. Baseline Psychological and Quality of Life

Psychosocial Measures (n = 53) Mean SD Range

BaselineAnxiety 11.8 7.1 1-26Depression 11.2 10.0 0-40Anger 7.4 8.1 0-40Vigor 13.0 6.2 2-29Fatigue 9.2 6.5 0-25Confusion 8.7 4.5 1-20Overall distress 35.3 33.7 #19-136Physical well-being 10.4 7.5 0-35Social well-being 24.9 12.4 3-90Emotional well-being 15.2 4.8 5-24Functional well-being 15.6 5.1 6-28Overall QOL 45.2 18.0 24-125Spirituality 32.4 8.4 14-48

TABLE 6. Center Services Used Over Time (Number of Women)

3 Months 6 Months 1 Year

Center coordinator/nurse practitioner 27 15 9Social worker 8 4 4Nutritionist 7 3 2Stress management 3 2 2Hair consultant 12 4 2Massage therapy 8 3 5Genetic counseling 2 2 2Lymphedema education 2 2 2Pastoral care 2 3 2GYN support group 22 14 13Library 7 6 4Individual counseling 4 4 4Family counseling 2 2 3Imagery 15 10 4

Thirty-one women (58%) had received medical care for their cancerin the past 3 months. Fifteen of the women had undergone chemother-apy. Six women (11%) had been in the hospital, two for chemotherapy,one with an intestinal infection, and three for surgery. Of the fourwomen, who listed the number of days they were in the hospital, theaverage stay was 6.5 days. Eighteen women had seen other health pro-fessionals, the most common being acupuncturist. Two women hadseen herbalists or surgeons, and one woman each for physical therapy,naturopath, chi-gong, Chinese medicine, counseling, primary care phy-sician, psychiatrist, or Reiki healer.

Only seven of the women had returned to work, four full-time andtwo part-time. Five women had never worked outside the home.

At the End of 6 Months

At the end of 6 months, 31 women returned their questionnaires. Be-tween the 3 and 6-month time period 21 women (40%) had used someof the services at the center. Again the highest ratings went to the centercoordinator/nurse practitioner, the support group, imagery, and the hairconsultant (see Table 7). Nine women had used services elsewhere, two


TABLE 7. Center Utilization

At End of 3 Months At End of 6 Months At End of 1 Year

n Mean(SD)

n Mean(SD)

n Mean(SD)

Have used the center 32 21 19Satisfaction with:Coordinator/NP 27 5 (.2) 15 4.8 (.56) 9 5 (0)Social worker 8 3.5 (2.2) 4 2.5 (2.9) 4 2.5 (2.9)Nutrition 7 2.6 (2) 3 .33 (.58) 2 0 (0)Stress management 3 1 (2) 2 0 (0) 2 0 (0)Hair consultant 12 4.2 (1.5) 4 3.5 (2.4) 2 0 (0)Massage therapy 8 3.6 (2.3) 3 3.3 (2.9) 5 3 (2.7)Genetic counseling 2 0 (0) 2 0 (0) 2 0 (0)Lymphedema 2 0 (0) 2 0 (0) 2 0 (0)Pastoral care 2 0 (0) 3 1 (1.7) 2 0 (0)GYN support group 22 4.2 (.87) 14 4.6 (.5) 13 4.5 (.78)Library 7 3.1 (2.2) 6 3.3 (2.0) 4 1.8 (2.4)Individual counseling 4 2.2 (2.6) 4 2.5 (2.9) 4 2.5 (2.9)Family counseling 2 0 (0) 2 0 (0) 3 1.3 (2.3)Imagery 15 3.9 (1.7) 10 3.8 (2) 4 2.5 (2.9)

for massage, three for individual counseling, three for support groups,one for family counseling and one used a library. Twenty-two women(43%) had received medical care, 10 (19%) had been hospitalizedon average 6 days–eight for surgery, one for dehydration, and one foran infected burn and neutropenia. Twelve women (23%) had receivedchemotherapy, eight (15%) had surgery, and three women (6%) hadradiation. All 31 women had seen an oncologist, while 22 had seenanother health care professional, most commonly acupuncture (13).Five women had seen an herbalist, and one woman saw a physicaltherapist, or naturopath. Fifteen women (28%) had returned to work, ninepart-time and five worked full-time.

At the End of 1 Year

At the end of 1 year, 23 women returned their questionnaires, a 43%response rate. Between the 3 and 6-month time period, 19 (83%)women had used some of the services at the center. Again the highestratings went to the center coordinator/nurse practitioner and the supportgroup (see Table 7). Four women had used services elsewhere: twowent to support groups, one to individual counseling, and one went to alibrary. Fifteen women had received medical care, ten had been hospi-talized on average four days (range 1-14 days): two for surgery, one forchemotherapy, one for ablation, and one for neutropenia. Nine womenhad received chemotherapy, two women had radiation, and one womanhad a needle biopsy. Twenty-two of the women had seen their oncologist.Twenty-two women had seen another health care professional, againmost commonly acupuncture (8). Five women had seen an herbalist,one each a naturopath, chiropractor, neurologist, or surgeon. Ninewomen had returned to work, six worked part-time while two workedfull-time.

Changes in Distress

At 3 months the women were less distressed than they had been at base-line, although some of the women were still quite distressed (see Table 8).However, on average the distress scores fell into the normal range(McNair, Lorr, & Droppleman, 1981). While anxiety decreased overtime, the only significant reductions were at 3 months (t = 2.27, p = .03)and 1 year (t = 2.97, p = .008). Depression also decreased over time,but while there was a trend for significance between baseline and3 months (t = 1.61, p = .12), the decrease was significant at 6 months


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(t = 2.77, p = .01) and at 1 year (t = 2.34, p = .03). The only significantdecrease in anger over time was between baseline and 1 year (t = 2.79,p = .01). The women had more vigor as time went on, and while therewas a trend for significance between baseline and 3 months (t = #1.95,p = .06) and baseline and 1 year (t = #1.86, p = .08), these increaseswere significant at 6 months (t = #2.79, p = .009). While there were nosignificant decreases in fatigue over time, Confusion also decreasedover time, and the decreases were significant between baseline and3 months (t = 2.55, p = .02), and at 6 months (t = 2.68, p = .01) but not at1 year.

Overall distress also decreased over time, and while there was a trendfor significance between baseline and 3 months (t = 1.89, p = .07) thesedecreases were significant at 6 months (t = 3.60, t = .001) and 1 year (t =3.16, p = .005).

When the women were divided on the basis of anxiety and depressionat baseline (using the cutoffs based on the norms provided by McNair,Lorr, & Droppleman, 1981), eight women were identified as being anx-ious, and five women were depressed. There were no significant differ-ences between with anxious versus nonanxious women in anxiety at3 months, although the women who were high on anxiety at baselinewere also significantly angrier at 3 months than the women who were notanxious (F = 9.72, p = .004). There was a trend toward significance inanxiety at 6 months, and there were significant differences in depres-sion at that time (F = 25.22, p = .000). The difference in anger was alsosignificant at this time (F = 15.59, p = .000). There were also significantdifferences in confusion (F = 5.05, p = .033) and total distress at6 months (F = 13.47, p = .001). At 1 year, there were significant differ-ences in anxiety (F = 69.55, p = .000), vigor (F = 9.78, p = .006), and fa-tigue (F = 29.02, p = .000). Of these eight women, five had used theservices of the center at the 3-month mark. Two women had seen thecenter coordinator/nurse practitioner, one had seen the social worker,one had seen the nutritionist, one had seen the temporary hair consul-tant, one had been in the support group, one had individual counseling,one had an interactive imagery session, and one had seen the massagetherapist.

Similar differences were seen for the women who were or were notdepressed. There were significant differences in depression (F = 5.12,p = .03) and anger (F = 14.91, p = .001) at 3 months; in anxiety (F = 5.10,p = .03), depression (F = 26.35, p = .000), anger (F = 65.04, p = .000), fa-tigue (F = 4.04, p = .05), confusion (F = 9.03, p = .006), and overall dis-tress (F = 19.81, p = .000) at 6 months; and anxiety (F = 69.55, p = .000),


vigor (F = 9.78, p = .006), fatigue (F = 29.02, p = .000) at 1 year. Of thefive depressed women one saw the coordinator/nurse practitioner, onehad seen the social worker, one had seen the nutritionist, one had seenthe temporary hair consultant, one had a massage session, one had indi-vidual counseling, and one had interactive imagery.

As shown in Table 9, age was also significantly correlated withdepression (r = #.54, p = .002), anger (r = #.41, p = .02), confusion (r =#.59, p = .000), and overall distress (r = #.47, p = .006) at 3 months;with anxiety (r = #.44, p = .05), and confusion (r = #.55, p = .002) at6 months; and with fatigue (r = #.41, p = .03) at 1 year. Several othervariables were moderately correlated with age but did not reach signifi-cance–confusion at baseline (r = #.28, p = .11), anxiety (r = #.34,p = .06) and vigor (r = .30, p = .10) at 3 months; and with depression(r = #.31, p = .10) and anger (r = #.29, p = .13) at 6 months. As thesecorrelations show, the younger women were more distressed than theolder women.

Changes in Quality of Life

Surprisingly, physical well-being decreased over time, and this de-crease was significant at 1 year (t = 2.63, p = .02) (Table 10). Emotionalwell-being did increase over time, significantly at all time points (forbaseline to 3 months t = #2.88, p = .007; for baseline to 6 months t =#3.0, p = .006); at 1 year t = #2.92, p = .008). Functional well-beingalso increased over time and the difference was also significant at all thetime points (for baseline to 3 months t = #2.65, p = .01; for baseline to 6months t = #2.21, p = .04; at 1 year t = #4.02, p = .001). There were nodifferences in social well-being over time. Surprisingly there were nosignificant differences in overall quality of life over time. Spiritual


TABLE 9. Correlations with Age

Variable r p

3 Month depression #.54 .0023 Month anger #.41 .023 Month confusion #.59 .0003 Month total distress #.47 .0066 Month anxiety #.41 .036 Month confusion #.55 .0026 Month total distress #.41 .031 Year fatigue #.44 .05

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well-being increased over the year, and this increase was also signifi-cant (t = 3.05, p = .009).

When the anxious versus non-anxious women were compared, sig-nificant differences were seen between the groups in emotional well-being (F = 11.89, p = .001) and functional well-being (F = 8.05, p =.007) at baseline. Significant differences were again seen in emotionalwell-being at 6 months (F = 5.58, p = .03) and at 1 year (F = 5.99, p =.02), as well as overall quality of life at 3 months (F = 4.80, p = .04).When the women who were or were not depressed were compared,there were significant differences in emotional well-being (F = 13.3, p =.001) at baseline, 6 months (F = 5.58, p = .03), and 1 year (F = 5.99, p =.02) but not at 3 months. However, there was a significant difference inoverall quality of life at 3 months (F = 4.8, p = .04).

Age was significantly correlated with social well-being at baseline(r = #.42, p = .01), social well-being at 3 months (r = .53, p = .01), andemotional well-being at 3 months (r = #.51, p = .003) (see Table 11).There were trends towards significance for emotional well-being at6 months (r = .31, p = .11), overall quality of life at baseline (r = #.32,p = .1), and overall quality of life at 3 months (r = .42, p = .08). These re-sults indicate that except for baseline, older women had more social,emotional well-being and quality of life than the younger women.

DISCUSSION

Use of the Center

There are few studies that examine information seeking or the use ofservices by women with gynecological cancers (Hopkins, McDowell,Le, & Fung, 2005). This study shows that the majority of the womenin the sample used the services of the center at some point over the year.The most used services were that of the center coordinator/nurse practi-tioner, the GYN support group, the hair consultant, and the imagery


TABLE 11. Correlations with Age

Variable r p

Baseline social well-being #.42 .013 Month social well-being .53 .023 Month emotional well-being #.51 .003

sessions. The visits to the nurse practitioner may have been related tochanges in the course of the disease and treatment over time. The socialworker, massage therapist, and the nutritionist seemed to be importantat the beginning of the cancer experience but not so much at later stages.The least used services were the genetic counseling or, lymphedemaeducator, pastoral care, and family counseling. The women were con-sistently very satisfied with the center coordinator/nurse practitionerand the GYN support group and were moderately satisfied with the so-cial worker, hair consultant, massage therapist, library, and imagery.However, at 1 year the women seemed less satisfied with all of the ser-vices with the exception of the center coordinator/nurse practitioner andthe GYN support group. This may be owing to the fact that as time goeson the other services become less needed, but the women still want tocontinue contact with others who have had the same experience as wellas a health care professional such as the center coordinator/nurse practi-tioner. Few women used services outside the center, suggesting thatthey were satisfied overall with the services at the center.

Psychological Distress

Overall distress decreased over time, however it must be noted that ingeneral the women were not overly distressed. This is consistent withthe findings of Lutgendorf et al. (2002). The levels of distress foundin this study are lower than those reported elsewhere (e.g., Cain et al.,1983; Hipkins et al., 2004; Kornblith et al., 1995, Zabora et al., 2001),but are similar to those found by Wenzel et al. (2002). These inconsis-tencies may be due to the different measures of depression and anxietyused as well as sample size. Energy (vigor) increased over time, and at1 year was actually higher than the normative sample (Mc Nail, Lorr, &Droppleman, 1981). Eight women in the group were higher than themean on the normative sample of the POMS in terms of anxiety, andfive women also fell above the normative mean for depression. Interest-ingly, none of these women were in the support group. Age was also afactor, with younger women being more distressed than older womenand having lower social well-being at baseline and with emotionalwell-being at 3 months (however, it must be noted that at 3 months olderwomen were more likely to have higher social well-being). This is con-sistent with the literature on gynecologic and breast cancer (Anderson,1993; Wong-Kim & Bloom, 2005). About a third of the women wantedto talk with the nurse practitioner about menopause and a quarter wantto talk about sexual concerns. This rate is similar to the percentage of


sexual dysfunction found by Anderson and her colleagues (1989) whofound a 30 percent rate of sexual dysfunction among a group of womenwith gynecological cancer, but is smaller than the rates found by Cainet al. (1983), Taylor et al. (2004), and Wenzel et al. (2002). However,Steginga and Dunn (1997) found lower rates of reported sexual prob-lems (13%).

Quality of Life

Surprisingly physical well-being decreased over time and becamesignificant at 1 year. It may be that some women had decreases in healthor were still taking chemotherapy that would cause a decrease in physi-cal well-being. However, functional well-being increased significantlyover time. As expected emotional well-being also increased significantlyover the year. Again surprisingly social well-being did not increase.Lutgendorf et al. (2002) found significant increases in emotional andfunctional well-being but not in social well-being. It may be that thewomen already had enough social support and thus a ceiling effect mayhave occurred.

LIMITATIONS

The main limitations were the small sample size, lack of a controlgroup, and the decreased response rate over time. There was only a 43percent retention rate over the year. Therefore significant differencesin the variables may not have been seen owing to the small sample sizeat the follow-up assessments. Lack of a control group makes it difficultto ascertain if the changes over time were indeed related to usage of thecenter. In addition, the majority of the women were not particularly dis-tressed, however there were significant differences in both distress andquality of life between the women who were and were not depressed oranxious.

IMPLICATIONS FOR CLINICAL PRACTICE

This study was able to show what services are most valued by womenwith gynecological cancers, and which were not so popular. Havinga nurse practitioner who saw the patients at least at the beginning as wellas being in a cancer support groups consistently received high ratings


throughout the year. While support groups are now common at cancercenters, having a nurse practitioner meet with every one at the begin-ning may be less common. Having a nurse practitioner who could talkabout treatment side effects, menopause, body image, sexuality, etc.,was helpful to at least half of the women. Having someone that theycould talk to about nutrition was also important to these women (manyof whom gained information on nutrition from the nurse practitioner).Centers might also want to include hair consultants, as well as comple-mentary treatments such as imagery, massage therapy, etc.

However, it must be noted that the services that were utilized heremay be unique to this setting. Other centers might find that these and/orother services are important to their patients. In this study, mentalhealth, pastoral and genetic counseling were not as popular as other ser-vices. This may not be the case at other cancer centers. It is suggestedthat a service utilization survey be used to find out what the patients ateach cancer center might find useful. Based on the results of this studyas well was others, at the least a support group and someone to talkto about sexual/body image and nutritional issues are important servicesto have.

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doi:10.1300/J077v25n03_05


A Pilot Study: Evaluation of a Psychosocial Program for Women with Gynecological Cancers INTRODUCTION

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