Patient Education and Counseling 46 (2002) 267275

Telephone counseling in psychosocial oncology: a report from the Cancer Information and Counseling Line
Alfred C. Marcus*, Kathleen M. Garrett, Alanna Kulchak-Rahm, Denise Barnes, Wendy Dortch, Sara Juno
AMC Cancer Research Center, 1600 Pierce Street, Denver, CO 80214, USA Received 23 January 2001; received in revised form 7 June 2001; accepted 11 June 2001

Abstract Providing psychosocial counseling services to cancer patients and their signicant others by telephone is emerging as an alternative to traditional (in-person) counseling programs in psychooncology. In this paper, data are reported describing the clients of such a program that has been in continuous operation since 1981: the Cancer Information and Counseling Line (CICL) of the AMC Cancer Research Center. An examination of call record forms completed between 1 June 1998 and 30 May 1999 (N 1627) revealed that the vast majority of callers were female (77%), non-Hispanic White (77%), with at least some college education (62%). Only 27% were cancer patients/survivors, compared to 43% who were spouses, other relatives and friends of cancer patients/survivors, and 16% who were symptomatic callers. Breast cancer was by far the most frequently mentioned cancer site (30%). Although initial topics of inquiry were dominated by requests for medical information (77%), with only a small percentage of callers initially requesting psychosocial support and counseling (12%), by the time, the call was completed, 67% had received some form of psychosocial support and/or counseling. Recommendations for future research are discussed within the context of this review. # 2002 Elsevier Science Ireland Ltd. All rights reserved.
Keywords: Telephone counseling; Psychosocial oncology

1. Introduction The telephone has emerged as a major channel for delivering cancer-related information, the pre-eminent example of which is the Cancer Information Service (CIS) of the National Cancer Institute (NCI) [1,2]. Previous research has shown that telephone-based cancer information programs are providing a critical service, both in the United States [17], as well as internationally [812]. The telephone has also been investigated as a channel for promoting health education, behavior change, and health service delivery [1315], as well as providing crisis intervention and other therapeutic counseling services to patients [1618]. In the eld of psychosocial oncology, the telephone offers many advantages in providing counseling services to cancer patients [19]. Only a small fraction of cancer patients take advantage of in-person counseling programs [2022]. Physical limitations and transportation are often cited as barriers, as well as the reluctance of large numbers of cancer patients to
Corresponding author. Tel.: 1-303-239-3397; fax: 1-303-233-1863. E-mail address: marcusa@amc.org (A.C. Marcus).
*

participate in group counseling programs. By contrast, the telephone is not limited by geographic boundaries or transportation barriers, it can provide counseling services to the home-bound or physically compromised client, and it can provide a greater sense of privacy and anonymity when compared to in-person counseling programs. The telephone also represents an affordable and almost universally available alternative to in-person counseling. In this paper, data are reported from a cancer telephone counseling service that has been in continuous operation since 1981. This telephone counseling program is the Cancer Information and Counseling Line (CICL) of the AMC Cancer Research Center (Denver, CO). Data will be presented describing the types of clients who call this service and their topics of inquiry. About 15 years ago, Rainey [23] published a similar paper describing a comparable program located at the University of California, Los Angeles. Thus, this paper will provide a 15-year update on the clients served by a telephone cancer counseling service. In addition, data will be presented assessing the need for a new type of service provided by cancer telephone helplines. This new service would essentially reverse the process of accessing telephone helplines by having counselors initiate call-backs

0738-3991/02/$ see front matter # 2002 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 7 3 8 - 3 9 9 1 ( 0 1 ) 0 0 1 6 3 - X

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with clients to provide longer-term support and counseling. Finally, this review of the CICL will provide a context for illuminating the potential contributions of telephone-based counseling programs in psychooncology, and the need for more research. 1.1. The Cancer Information and Counseling Line The CICL was established in 1981 to provide information and brief psychosocial counseling to cancer patients and their signicant others. This program is provided free of charge as a community service by the AMC Cancer Research Center. Individuals can access the CICL nationwide by calling a toll-free telephone number (1-800-525-3777). Current call volume to the CICL approximates 3000 calls annually, which is nearly double the call volume of several years ago (due to increased Internet listings as well as advertising in print media). The CICL is housed in approximately 1200 square feet of ofce space, and includes two counselor workstations with two WATTS lines. An extensive library of NCI print material exists for cancer patients, which are routinely mailed to callers as a follow-up service of the CICL. 1.1.1. The CICL counseling model The CICL utilizes a brief, integrative, telephone counseling model to meet the educational and psychosocial needs of cancer patients and those who care for them. The CICL addresses cancer-related issues across the entire illness continuum, from at-risk and newly diagnosed patients through long-term survival and end-stage care. Although diverse theoretical orientations have been adapted to brief counseling models, three key elements dene the brief therapeutic process: (1) reliance on structure; (2) emphasis on time; and (3) orientation toward action [24]. 1.1.1.1. Reliance on structure. CICL calls focus exclusively on cancer. Calls are structured by the counselor's initial assessment of who the caller is (e.g. patient, caregiver, family member, friend, etc.), where the caller is positioned on the illness continuum (e.g. acute, re-entry, long-term survivor, recurrent, or end-of-life phase), the caller's identified problems (e.g. medical, physical, psychological, social, economic, sexual, etc.), and the type and level of intervention required (e.g. information, resources, psychosocial, or a combination). Since many CICL callers present with medical problems and requests for medical information, telephone counselors are trained to assess functioning across other psychosocial domains. Emphasis is placed on emotional and social well-being and probes are applied to assess such factors as emotional distress, coping ability, and social support. Consistent with Reid's brief therapy framework, counselors do not focus on singular theoretical explanations of cancer-related issues, but instead draw from a ``theory menu'' to identify possible explanatory factors that best match the caller's identified situation and problem, and are most amenable to action [25,26]. Currently, the CICL theory

menu includes existential, crisis, medical decision making, stress and coping, grief, and family systems models. 1.1.1.2. Emphasis on time. All brief therapies are structured by their short temporal duration. However, it has been noted that brief counseling is defined more by an attitude than by a specific number of counseling sessions [2729]. In keeping with the principles of brief therapy, CICL counselors utilize the standard single session format to emphasize an expectancy for client change in the moment. Counselors maximize the brevity of the intervention at termination by summarizing the process and punctuating the progress that was made, and fostering a sense of optimism, self-efficacy, and control by the client. 1.1.1.3. Orientation toward action. By nature, brief therapies are active and focused on ``solving'' problems. The CICL counseling model is both action-oriented and sensitive to existential aspects of the cancer experience that are beyond the control of the client. Great emphasis is placed on helping clients acknowledge personal loss and the unchangeable aspects of their situation, so that they are better able to address those aspects of the cancer experience over which they have control. This therapeutic objective of becoming aware of what is and what is not controllable during the crisis of illness has been associated with improved emotional well-being and decreased medical visits [30], as well as enhanced coping and post-traumatic growth [31]. 1.1.2. Training and supervision of CICL counselors The CICL is currently staffed by three Masters-level trained counselors who have extensive experience in psychosocial counseling of cancer patients and their signicant others. Prior to stafng the telephone, counselor trainees receive an intensive 18 session training program that is conducted over an 810 week period. The training program utilizes an operations and training manual supplemented with reading assignments from the scientic literature. Cancer-specic training sessions include general overviews of cancer, carcinogenesis, genetic risk, cancer prevention strategies, cancer screening, diagnostics, cancer treatment, managing the health care system, and clinical trials and complementary therapies. Following these general overviews, more in-depth education and training occur for selected cancer sites, recurrent and advanced diseases, and survivorship issues. Psychosocial-specic training begins with an introduction to the brief telephone counseling model and an overview of the cancer ``illness'' trajectory. Psychosocial training sessions include a series of eight 2 h workshops designed to correspond with the previously described CICL theory menu. Seven core theoretical topics are covered: (1) crisis intervention, (2) existential counseling, (3) stress and coping, (4) informed decision making, (5) stages of change, (6) family systems, and (7) grief. Following the 810 week training program, counselors undergo extensive monitoring and supervision by a licensed

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clinician. During the rst several weeks following training, all calls handled by trainees are monitored live, with supervisors completing standardized rating forms assessing various aspects of the counseling process. Following this period of intensive monitoring of live calls, on-going supervision occurs weekly, involving both individual and group meetings, with the latter including a case presentation of calls by the counselors for group discussion and review, as well as randomly selected calls from each counselor that are monitored by the clinical supervisor. 2. Methods Data reported in this paper were obtained from the electronic call record forms (ECRF) completed for CICL callers from 1 June 1998 to 30 May 1999 (N 1627). This standardized, xed-response form is completed by the counselor at the end of usual service, and for some of the items, involves asking callers specic standardized questions (e.g. demographic information, how the caller learned of the CICL). This form was patterned after a similar call record form used by the CIS of the NCI. The ECRF includes questions to assess the type of caller contacting the CICL (diagnosed cancer patient, symptomatic caller, relative or friend of cancer patient, general public, etc.) and their sociodemographic characteristics (gender, age, education, race/ethnicity). In addition, the following information is collected: (1) site or type of cancer the client is calling about; (2) initial topic of inquiry (i.e. risks, carcinogens, prognosis, treatment, symptoms, etc.); (3) cancer trajectory related to the call (symptomatic, newly diagnosed, in-treatment, post-treatment); (4) assessment issues, including: physical and medical issues (e.g. sitespecic information, prevention/risk information, screening recommendations, diagnostic tests, treatments and side effects, follow-up), as well as psychosocial issues (e.g. control, anxiety, depression, sexuality, grief, fear, spirituality, etc.); and (5) information and counseling provided to the caller, including: physical and medical information given on treatment options, second opinions, referrals to other agencies, cancer screening, etc. psychosocial support and counseling, including: affective (normalize/validate feelings, support hopefulness, etc.), behavioral (self-nurturance strategies, relaxation techniques, problem-solving/goal setting techniques, etc.), cognitive (identication of stressors and constructive responses, challenging distortions, nourishing spirituality, awareness of coping style, reinforce strengths, etc.), and social/communication tools for communicating with medical staff, family members, or friends. 3. Results 3.1. Characteristics of CICL callers As reported in Table 1, about one in four callers to the CICL (27%) were cancer patients/survivors. Over 40% of

Table 1 Type of caller to the CICL (1 June 1998 to 30 May 1999) N Patient/survivor Spouse of patient/survivor Relative of patient/survivor Friend of patient/survivor Symptomatic caller Relative of symptomatic caller Friend of symptomatic caller Other callers Total 488 188 473 137 289 37 15 211 1838 % 26.6 10.2 25.7 7.5 15.7 2.0 0.8 11.5 100.0

callers were accessing the CICL on behalf of a spouse/ partner (10%), other relative (26%), or friend (7%) with a diagnosis or history of cancer. Symptomatic callers represented 16% of all calls, while only 3% were relatives or friends of symptomatic individuals. The 11% of callers were classied as ``other'', representing a diverse group of callertypes (e.g. asymptomatic callers not calling on behalf of a relative or friend, health professionals, students writing school papers, etc.). Given the heterogeneity of this latter group, all subsequent analyses will target the remaining caller groups shown in Table 1 (approximately 90% of all callers to the CICL, N 1627). As indicated in Table 2, the age distribution of callers to the CICL (excluding the ``other'' caller-group) was equally
Table 2 Demographic characteristics of CICL callersa N Age 30 3140 4150 5160 6170 >70 Missing Gender Female Male Ethnicity Non-Hispanic White Black Hispanic Asian/Pacific Islander American/Alaska Native Other Missing Education Less high school High school Some college College graduate Post-graduate Missing
a

% 8.4 17.2 19.4 17.6 13.6 10.2 13.6 76.8 23.2 76.8 5.2 3.3 1.4 0.4 1.8 11.1 5.8 21.9 24.5 27.6 10.3 9.9

137 280 316 286 221 166 221 1250 377 1250 85 53 23 7 29 180 95 357 398 449 167 161

N 1627; excludes callers coded as ``other'' in Table 1.

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Table 3 Cancer trajectory of CICL callers by type of callera Cancer patients/survivors/ symptomatic callers N Symptomatic Newly diagnosed In-treatment Post-treatment (no recurrence/palliative care) Recurrence/palliative care/hospice Total
a

Spouses/other relatives/friends N 96 219 250 49 195 809 % 11.9 27.1 30.9 6.1 24.1 100.0

Total N 387 378 400 151 270 1586 % 24.4 23.8 25.2 9.5 17.0 100.0

% 37.5 20.5 19.3 13.1 9.7 100.0

291 159 150 102 75 777

Excludes callers coded as ``other'' in Table 1. Chi-square test of cancer trajectory (5 levels) by type of caller (2 levels): w2 204:2; d:f : 4; P < 0:001; N 1586.

distributed across age groups, with each decade representing approximately 1020% of all callers (beginning with callers 3140 years of age). Also evident from Table 2 is that the majority of callers were female (77%), non-Hispanic White (77%), with at least some college education (62%). Although callers to the CICL made inquiries covering the full array of cancer sites, breast cancer was by far the most frequently mentioned cancer site (30%). Other frequently reported cancer sites included colorectal (8%), prostate (8%), lung (7%), cervix/ovarian/uterine (6%), and leukemia/lymphoma (6%). The cancer trajectory of callers to the CICL is shown in Table 3. Among those clients who were calling about themselves (i.e. cancer patients/survivors/symptomatic callers), 37% were symptomatic, 20% were newly diagnosed, 19% were in treatment, 13% were post-treatment not inquiring about a recurrence or palliative/hospice care, while 10% were seeking information or counseling related to a recurrence or palliative/hospice care. By way of comparison, among those clients who were calling on behalf of other family members or friends, 12% of these family members and friends were symptomatic, 27% were newly diagnosed, 31% were in treatment, 6% were post-treatment not inquiring about a recurrence or palliative care, while 24% were seeking information or counseling related to a recurrence or palliative care. Thus, nearly 60% of this latter group of callers were making inquiries about family members and friends who were either newly diagnosed or in treatment, compared to 40% of clients who were calling about themselves, while an even larger relative difference can be seen for inquiries involving a recurrence or palliative care (24% versus 10%). In contrast, clients who were calling about themselves were much more likely to be symptomatic (37% versus 12%) or post-treatment with no recurrence or inquiries about palliative care (13% versus 6%). 3.2. Source of referrals to the CICL Approximately one-in-three rst-time callers to the CICL (34%) cited the telephone book or the telephone information operator as the way they learned of the CICL, while 24%

reported brochures and pamphlets, and another 10% reported friends, neighbors, and/or co-workers as their source of referral to the CICL. Other organizations and the Internet each accounted for about 8% of rst-time callers, while referrals from health care professionals were mentioned by only 5% of CICL callers. The vast majority of the remaining rst-time callers either could not remember their referral source or sited other miscellaneous sources. Approximately 14% of all callers were repeat users of the CICL. 3.3. Initial topics of inquiry to the CICL Given the high percentage of callers who were themselves symptomatic, newly diagnosed or in treatment, or calling on

Table 4 Initial topics of inquiry among CICL callersa N Medical Site specific information Treatment information Symptoms Treatment facility Tests (non-screening) Prognosis/rehabilitation Screening Other Total Psychosocial Support resources Emotional response Other Total Other initial inquiry Economic/insurance Transportation/supplies Other Total
a

% 24.1 22.7 9.5 7.2 5.0 3.7 1.8 2.7 76.7 7.3 3.1 1.3 11.7 4.8 2.8 4.2 11.8

392 369 154 117 81 60 29 44 1246 118 50 21 189 78 46 68 192

N 1627; excludes callers coded as ``other'' in Table 1.

A.C. Marcus et al. / Patient Education and Counseling 46 (2002) 267275 Table 5 Psychosocial counseling by selected caller characteristicsa Caller characteristics Psychosocial counseling services Yes: initial inquiry N Age 30 3140 4150 5160 6170 >70 Gender Female Male Race/ethnicity Non-Hispanic White Black Hispanic Education Less high school High school graduate Some college College graduate Post-college Caller type Patient/survivor Spouse of patient/survivor Other relative of patient/survivor Friend of patient/survivor Symptomatic Friend/relative of symptomatic caller Cancer trajectory Symptomatic Newly diagnosed In-treatment Post-treatment (no recurrence/palliative care) Recurrence/palliative care/hospice Cancer site Breast Colorectal Prostate Lung Cervic/ovarian/uterine Leukemia/lymphoma Total
a

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P-values

Yes: not initial inquiry No/none N 68 171 182 185 128 111 712 183 749 43 32 54 202 242 274 97 304 104 266 40 156 25 203 218 219 67 173 305 83 75 65 59 50 895 % 49.6 61.1 57.6 64.7 57.9 66.9 57.0 48.5 59.9 50.6 60.4 56.8 56.6 60.8 61.0 58.1 62.3 55.3 56.2 29.2 54.0 48.1 52.5 57.4 54.6 44.1 63.8 63.0 61.5 56.0 57.0 57.3 49.5 55.0 N 47 73 87 73 72 47 374 169 371 28 11 32 109 104 141 44 131 58 140 66 126 22 171 126 115 65 57 127 38 58 29 28 38 543 % 34.3 26.1 27.5 25.5 32.6 28.3 29.9 44.8 29.7 32.9 20.7 33.7 30.5 26.1 31.4 26.3 26.8 30.9 29.6 48.2 43.6 42.3 44.2 33.2 28.7 42.8 21.0 26.2 28.2 43.3 25.4 27.2 38.0 33.3 0.008 (w2 23.8; d.f. 10)

% 16.1 12.9 14.9 9.8 9.5 4.8 13.1 6.6 10.4 16.5 18.9 9.5 12.9 13.1 7.6 15.6 10.9 13.8 14.2 22.6 2.4 9.6 3.4 9.5 16.7 13.2 15.1 10.7 10.4 0.8 17.5 15.5 12.9 11.7

22 36 47 28 21 8 164 25 130 14 10 9 46 52 34 26 53 26 67 31 7 5 13 36 67 20 41 52 14 1 20 16 13 189

0.001 (w2 33.5; d.f. 2)

0.073 (w2 8.5; d.f. 4)

0.068 (w2 14.6; d.f. 8)

0.001 (w2 89.0; d.f. 10)

0.001 (w2 77.9; d.f. 8)

0.001 (w2 36.6; d.f. 10)

N 1627; excludes callers coded as ``other'' in Table 1. P-values based on Chi-square test of each caller variable by psychosocial counseling services (3 levels). Chi-square statistics and degrees of freedom (d.f.) shown in parentheses.

behalf of family members and friends with this prole, it is not surprising that the majority of callers (77%) were initially seeking medical information (see Table 4). These initial topics of inquiry included site-specic information not related to treatment options (e.g. etiology, prognosis) (24%), as well as inquiries about cancer treatment (23%), symptoms (9%), and treatment facilities (7%). In contrast, what is somewhat surprising given the counseling emphasis of the CICL is the low percentage of callers who initially

presented with psychosocial concerns or questions. Only about 1 in 10 callers (12%) indicated that this was their main reason for calling the CICL. 3.4. Psychosocial concerns as a latent priority among callers to the CICL As noted above, the vast majority of callers to the CICL were initially seeking medical information (77%), with only

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12% of clients indicating that their main reason for calling the CICL was to obtain psychosocial counseling or support. However, by the time, the call was completed, 67% of CICL callers (N 1084) had received some form of psychosocial counseling, as recorded by the counselors on the ECRF at the end of the call. As reported in Table 5, callers that were most likely to receive psychosocial support and counseling as an adjunct to their initial topics of inquiry included callers >30 years of age, females, non-Hispanic Whites and Hispanic callers, and callers inquiring about a cancer recurrence or palliative care. Overall, those subgroups that were more likely to mention psychosocial concerns at some point during their call included females, cancer patients/survivors and the spouses and other relatives of cancer patients/ survivors, callers making inquiries about a cancer recurrence or palliative care, and callers making inquiries about breast, colorectal, lung, and cervix/ovarian/uterine cancer. 3.5. Counselor-initiated call-backs to clients of cancer telephone helplines Standard operating procedure within the CICL requires that clients initiate contact with the service (via a toll-free telephone number). In addition, the CICL currently does not have a specic protocol to call clients back to provide ongoing counseling and support. However, it is conceivable that such a service could be implemented, which would fundamentally extend the role of cancer telephone helplines to include periodic, longer-term support and counseling for those clients in greatest need. Pursuant to the development of such a program within the CICL, a random survey of CICL callers (N 197) was conducted between 15 January 2000 and 25 March 2000. Included in this survey, which was appended to the ECRF, was a question asking callers if they or other CICL callers would benet from follow-up telephone calls initiated by CICL counselors. Of the 197 callers who were surveyed, 147 (75%) answered in the afrmative, while another 40 callers (20%) were unsure. Only 10 callers (5%) felt that a follow-up call initiated by the counselor would not be of benet to themselves or other CICL callers. 4. Discussion A clear majority of callers to the CICL were female (77%), non-Hispanic White (77%), and highly educated (62% had at least some college education). This same caller prole was described by Rainey [23] about 15 years ago in his report of a similar telephone counseling program in psychooncology (i.e. 71% were female, 85% were nonHispanic White, 75% had at least some college education). Moreover, this same caller prole is consistent with that of the national CIS [4,32,33]. Taken together, these ndings underscore the need for more research to extend telephonebased cancer information and counseling services to underserved populations in this country. Several recent examples

of such research have been conducted within the CIS, including the use of mass media and making outcalls to low income neighborhoods [3436]. It would also appear that physician referrals might serve this same function, especially referrals by physicians who treat large numbers of minority cancer patients. Only about 5% of rst-time callers to the CICL were referred by their physicians, which suggests the need to form stronger and more visible partnerships with the medical community. In addition, efforts to increase utilization of telephone counseling programs by men may require outreach strategies that promote such services not as psychosocial counseling programs (the utilization of which could be viewed as a sign of vulnerability that would be inconsistent with gender stereotypes), but as a resource for education, information, and skills development [21,22]. Although 77% of callers to the CICL were initially seeking medical information, this nding does not imply that psychosocial counseling will be of marginal interest or benet to the clients of cancer telephone helplines. For example, while only 12% of CICL callers made initial inquiries regarding psychosocial support, resources and/or counseling, 67% ultimately received psychosocial support and counseling during their call to the CICL. One possible explanation for this dramatic uptake in psychosocial counseling is that counselors were imposing a psychosocial agenda on the caller. This is unlikely, given that CICL practice guidelines preclude such services unless the caller acknowledges psychosocial concerns at some point during the call. However, as noted previously, CICL counselors are trained to acknowledge and normalize the full range of emotions that accompany a cancer diagnosis and treatment, and to probe for psychosocial concerns during information calls. These counselor-initiated probes are operationalized by asking questions to ascertain how the client feels about the information that was provided, and more generally, how the client is coping with the situation that prompted the call to the CICL. This process of normalizing and gently probing for psychosocial issues and concerns is intended to facilitate trust, and to provide a safe environment for exploring psychosocial concerns that might otherwise go undetected. It is this process that differentiates psychoeducational counseling services from those that are strictly informational. Given that the vast majority of counseling services provided to CICL clients were secondary to requests for medical information, it would seem that initial inquiries for medical information may harbinger or perhaps even mask underlying psychosocial sequelae that should be explored during usual service. Thus, providing medical information may represent only the rst step in providing comprehensive services to clients, especially if the information triggers psychosocial issues and concerns as the client attempts to internalize and extract meaning from this information. Based on this review of CICL ECRF data, clients who are most likely to benet from counselor-initiated probes for psychosocial issues and concerns include females,

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non-Hispanic White and Hispanic clients, and clients making inquiries about a cancer recurrence or palliative care. Only 27% of callers to the CICL were cancer patients or cancer survivors, while 43% were spouses, other relatives, or friends of cancer patients/survivors. Interestingly, virtually identical results were reported by Rainey [23] (i.e. cancer patients 23% of callers; spouses, other relatives and friends of cancer patients 45% of callers). Also of note is that the percentage of spouses and other relatives of cancer patients who reported psychosocial concerns for themselves (both initially and at any point during the call) was comparable to that of cancer patients (see Table 5). This key nding suggests that spouses, other relatives, and caregivers of cancer patients are at similar risk for psychosocial sequelae, and again underscores the need for counselors to explore the psychosocial well-being of these clients as well as cancer patients and survivors. 4.1. The need for more telephone intervention research in psychosocial oncology Psychosocial interventions delivered in a face-to-face format have been shown to improve numerous outcomes among cancer patients, including managing side effects of treatment and improving overall quality of life [3748]. This body of research is so persuasive that it has prompted Meyer and Mark [45] to conclude that more research is not necessary, if the major thrust of such research is simply to investigate the efcacy of psychosocial interventions on cancer patients. Instead, Meyer and Mark call for more research that would investigate, among other issues, ``methods to increase cost-effectiveness, including alternative approaches to treatment delivery and implementation'' (p. 106). Consistent with this recommendation, future research might examine whether the telephone can be used to implement similar (or appropriately modied) interventions in psychooncology. As noted previously, the telephone has much to offer as a channel for psychosocial counseling. However, there are limitations to telephone counseling that also need to be recognized. The telephone is more than a channel. It is also a methodology that precludes the use of visual cues during counseling. Although the greater sense of anonymity provided by the telephone is often viewed as an advantage, for some clients the telephone might be seen as impersonal and distant [13]. Clients with hearing problems and those without telephones, which is estimated to be about 5% of the general population [49], would also be hard-pressed to utilize and benet from a telephone counseling program. This intriguing mix of potential advantages and disadvantages to telephone counseling underscores the need for more research. Do the advantages of telephone counseling outweigh the disadvantages? Under what conditions would it be appropriate to recommend telephone counseling to cancer patients and their signicant others? Investigating these two broad research questions will require a profound

re-conceptualization of how services are currently provided by telephone cancer counseling programs (as exemplied by the CICL). Multiple telephone counseling sessions will need to be designed and tested within the framework of theorydriven psychosocial interventions that focus on skills development (e.g. emotion-focused and problem-focused coping skills) in addition to providing a supportive function. As noted recently by Lovejoy and Matteis [40] in their review of cognitive-behavioral interventions for cancer patients with depression, ``Studies consistently suggest that regularly scheduled cognitive-behavioral therapy sessions are more effective in relieving cancer-related depression than haphazard schedules determined by the patients' need for medical treatment'' (p. 165). Thus, a new generation of telephone counseling studies in psychooncology will need to be conducted that rely on a structured or semi-structured format, using telephone counseling sessions that would not depend on the client calling the counseling service on an as-needed basis (as in the case of the CICL), but would instead rely on a prearranged schedule in which the counselor would call the client [50]. Will cancer patients be receptive to such programs? The answer would appear to be in the afrmative. For example, our survey of CICL callers indicated that 75% endorsed the strategy of counselors calling clients back as a follow-up to their initial call to the CICL. Similar ndings have also been reported elsewhere [51]. However, a recent review of the literature by Gotay and Bottomley [19] revealed very few published studies of multiple-session, protocol-driven telephone counseling interventions in psychooncology. Given the state-of-the-science, an agenda for future research might include several of the following research questions: 1. Will callers to cancer telephone helplines be receptive to counselor-initiated call-backs as an extension of usual service? Our survey of CICL callers would suggest that the answer is yes, but this finding needs to be replicated in future research. 2. Is telephone counseling really cost-effective relative to standard care, including both group and individual in-person counseling programs, and will the answer to this question depend on the type of end-point examined, the characteristics of the patient population, and/or that point in the illness trajectory targeted by the counseling program? 3. To what extent will structured telephone counseling programs be enhanced with the use of supplemental print materials? Of special note is the recent emergence of individually tailored print material as an intervention strategy to promote healthy lifestyle and behavior change [52]. Although the use of this intervention methodology shows great promise in health education, there has yet to be a test of this intervention strategy in psychooncology, including its use in combination with telephone counseling.

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A.C. Marcus et al. / Patient Education and Counseling 46 (2002) 267275 [4] Ward JA, Baum S, Ter Maat J, Thomsen CA, Maibach EW. The value and impact of the Cancer Information Service telephone service, part 4. J Health Commun 1998;3(Suppl):5070. [5] Davis SW, Fleisher L, Ter Maat J, Muha C, Laepke K. Treatment and clinical trials decision-making: the impact of the Cancer Information Service, part 5. J Health Commun 1998;3(Suppl):7185. [6] Darrow S, Speyer J, Marcus AC, Ter Maat J, Krome D. Coping with cancer: the impact of the Cancer Information Service on patients and significant others, part 6. J Health Commun 1998;3(Suppl): 8696. [7] Maibach EW, Davis SW, Ter Maat J, Rivera N. Promoting cancer prevention and screening: the impact of the Cancer Information Service, part 7. J Health Commun 1998;3(Suppl):97108. [8] Carlsson ME, Strang PM, Lindblad L. Telephone help line for cancer counseling and cancer information. Cancer Pract 1996;4:31923. [9] Browman GP, Czukar D, Mohide EA, Neimanis M, De Pauw S, Tew M, Barrett B. Survey of telephone contacts for a Regional Canadian Cancer Society District. Can J Oncol 1995;5:4206. [10] Venn MJ, Darling E, Dickens C, Quine L, Rutter DR, Slevin ML. The experience and impact of contacting a Cancer Information Service. Eur J Cancer Care 1996;5:3842. [11] Lechner L, DeVries H. The Dutch cancer information helpline: experience and impact. Patient Educ Couns 1996;28:14957. [12] Slevin ML, Terry Y, Hallet N, Jefferies S, Launder S, Plant R, Wax H, McElwain T. BACUPthe first 2 years: evaluation of a national Cancer Information Service. BMJ 1988;297:66972. [13] Soet JE, Basch CE. The telephone as a communication medium for health education. Health Educ Behav 1997;24:75972. [14] McBride CM, Rimer BK. Using the telephone to improve health behavior and health service delivery. Patient Educ Couns 1999;37:3 18. [15] Lichtenstein E, Glasgow RE, Lando HA, Ossip-Klein DJ, Boles SM. Telephone counseling for smoking cessation: rationales and metaanalytic review of evidence. Health Educ Res 1996;11:24357. [16] Aronson JK, editor. Use of the telephone in psychotherapy. New Jersey: Book-mart Press, Inc., 2000. [17] Shephard P. Telephone therapy: an alternative to isolation. Clin Soc Work J 1987;15:5665. [18] Stein DM, Lambert MJ. Telephone counseling and crisis intervention: a review. Am J Commun Psychol 1984;12:10126. [19] Gotay CC, Bottomley A. Providing psychosocial support by telephone: what is its potential in cancer patients? Eur J Cancer Care 1998;7:22531. [20] Thiel de Bocanegra H. Cancer patients' interest in group support programs. Cancer Nurs 1992;15:34752. [21] Cella DF, Yellen SB. Cancer support groups: the state of the art. Cancer Pract 1993;1:5661. [22] Taylor SE, Falke RL, Shoptaw SJ, Lichtman RR. Social support, support groups and the cancer patient. J Consult Clin Psychol 1986;54:60815. [23] Rainey LC. Cancer counseling by telephone help-line: the UCLA Psychosocial Cancer Line. Public Health Rep 1985;100:30815. [24] Wells R, Phelps P. The brief psychotherapies: a selective overview. In: Wells R, Giannetti V, editors. Handbook of the brief psychotherapies. New York: Plenum Press, 1990, p. 326. [25] Reid W. The task-centered system. New York: Columbia University Press, 1978. [26] Reid W. An integrated model for short-term treatment. In: Wells R, Giannetti V, editors. Handbook of the brief psychotherapies. New York: Plenum Press, 1990, p. 5577. [27] Hoyt M. On time in brief therapy. In: Wells R, Giannetti V, editors. Handbook of the brief psychotherapies. New York: Plenum Press, 1990, p. 11543. [28] Cade B, O'Hanlon W. A brief guide to brief therapy. New York: W.W. Norton & Co., 1993. [29] Walter J, Peller J. Becoming solution-focused in brief therapy. New York: Brunner/Mazel, 1992.

4. Can the telephone be used effectively to conduct group counseling, or is it best used for individual therapy [5357]? 5. Can telephone information and counseling programs in psychooncology augment and reinforce similar programs delivered through the Internet, as exemplified by the recent work of Gustafson and colleagues [5862]? All of the above questions await future research, which needs to receive continued support from the NCI, as well as other organizations that are committed to advancing the eld of psychooncology. Consistent with this general theme, existing telephone cancer information and counseling programs can provide a critically important resource by serving as laboratories for such research. 4.2. Practice implications In addition to the research agenda proposed above, the results from this study also imply several practice guidelines for telephone counseling programs in psychooncology. First, given that the majority of psychosocial counseling services provided by the CICL were secondary to requests for medical information, a standardized needs assessment protocol to identify and explore these psychosocial concerns with clients should be encouraged; otherwise, these concerns may go undetected in usual service. Second, the spouses, other relatives and friends of cancer patients who called the CICL received counseling and support services that were comparable to that of cancer patients. Thus, implementing the psychosocial needs assessment protocol recommended above should also extend to these vulnerable client populations. Third, the vast majority of clients to the CICL were receptive to counselor-initiated call-backs, which could be strategically incorporated into existing usual service programs. Finally, physicians, nurses, social workers and other allied health professionals might consider the value of referring cancer patients and their relatives and caregivers to telephone counseling programs. Such programs may be especially benecial in augmenting and extending psychosocial services beyond the treatment setting, and among patients and their families who are unable or unlikely to participate in more traditional (in-person) counseling programs.

References
[1] Morra ME, van Nevel JP, Nealon EO, Mazan KD, Thomsen C. History of the Cancer Information Service. J Natl Cancer Inst Monogr 1993;14:733. [2] Thomsen CA, Ter Maat J. Evaluating the Cancer Information Service: a model for health communications, part 1. J Health Commun 1998;3(Suppl):113. [3] Meissner HI, Anderson DM, Odenkirchen JC. Meeting information needs of significant others: use of the Cancer Information Service. Patient Educ Couns 1990;15:1719.

A.C. Marcus et al. / Patient Education and Counseling 46 (2002) 267275 [30] Stanton AL, Danoff-Burg S, Cameron CL, Bishop M, Collins CA, Kirk S, Sworowski LA, Twillman R. Emotionally expressive coping predicts psychological and physical adjustment to breast cancer. J Consult Clin Psychol 2000;68:87582. [31] Tedeschi R, Calhoun L. Trauma and transformation. Thousand Oaks, CA: Sage, 1995. [32] Marcus AC, Woodworth MA, Strickland CJ. The Cancer Information Service as a laboratory for research: the first 15 years. J Natl Cancer Inst Monogr 1993;14:6779. [33] Ward JA, Anderson DM, Pundik CG, Redrick A, Kaufman R. Cancer Information Service utilization by selected US ethnic groups. J Natl Cancer Inst Monogr 1993;14:14756. [34] Boyd NR, Sutton C, Orleans CT, McClatchey MW, Bingler R, Fleisher L, Heller D, Baum S, Graves C, Ward JA. Quit Today!a targeted communications campaign to increase use of the Cancer Information Service by AfricanAmerican smokers. Prev Med 1998;27:S5060. [35] Crane LA, Leakey TA, Woodworth MA, Rimer BK, Warnecke RB, Heller D, George VS. Cancer Information Service-initiated outcalls to promote screening mammography among low-income and minority women: design and feasibility testing. Prev Med 1998;27:S2938. [36] Crane LA, Leakey TA, Rimer BK, Wolfe P, Woodworth MA, Warnecke RB. Effectiveness of a telephone outcall intervention to promote screening mammography among low-income women. Prev Med 1998;27:S3949. [37] Iacovino V, Reesor K. Literature on interventions to address cancer patients' psychosocial needs: what does it tell us? J Psychosoc Oncol 1997;15:4771. [38] Andersen BL. Psychological interventions for cancer patients to enhance the quality of life. J Consult Clin Psychol 1992;60:55268. [39] Massie MJ, Holland JC, Straker N. Psychotherapeutic interventions. In: Holland JC, Rowland JH, editors. Handbook of psychooncology. New York: Wiley, 1989, p. 45569. [40] Lovejoy NC, Matteis M. Cognitive-behavioral interventions to manage depression in patients with cancer: research and theoretical initiatives. Cancer Nurs 1997;20:15567. [41] Bottomley A. Where are we now? Evaluating two decades of group interventions with adult cancer patients. J Psychiatr Ment Health Nurs 1997;4:25165. [42] Glanz K, Lerman C. Psychosocial impact of breast cancer: a critical review. Ann Behav Med 1992;14:20412. [43] Trijsburg RW, van Knippenberg FC, Rijpma SE. Effects of psychological treatment on cancer patients: a critical review. Psychosom Med 1992;54:489517. [44] Fawzy FI, Fawzy NW, Arndt LA, Pasnau RO. Critical review of psychosocial interventions in cancer care. Arch Gen Psychiatry 1995;52:10013. [45] Meyer TJ, Mark MM. Effects of psychosocial interventions with adult cancer patients: a meta-analysis of randomized experiments. Health Psychol 1995;14:1018. [46] Hill DR, Kelleher K, Shumaker SA. Psychosocial interventions in adult patients with coronary heart disease and cancer: a literature review. Gen. Hosp. Psychiatry 1992:14S, 28S42S.

275

[47] Devine EC, Westlake SK. The effect of psychoeducational care provided to adults with cancer: meta-analysis of 116 studies. Oncol Nurs Forum 1995;22:136981. [48] Sheard T, Maguire P. The effect of psychological interventions on anxiety and depression in cancer patients: results of two metaanalyses. Br J Cancer 1999;80:177080. [49] Anderson JE, Nelson DE, Wilson RW. Telephone coverage and measurement of health risk indicators: data from the National Health Interview Survey. Am J Public Health 1998;88:13925. [50] Marcus AC, Garrett KM, Cella D, Wenzel LB, Brady MJ, Crane LA, McClatchey MW, Kluhsman BC, Pate-Willig M. Telephone counseling of breast cancer patients after treatment: a description of a randomized clinical trial. Psychooncology 1998;7:47082. [51] Marcus AC, Cella D, Sedlacek S, Crawford ED, Crane LA, Garrett K, Quigel C, Gonin R. Psychosocial counseling of cancer patients by telephone: a brief note on patient acceptance of an outcall strategy. Psychooncology 1993;2:20914. [52] Skinner CS, Campbell MK, Rimer BK, Curry S, Prochaska JO. How effective is tailored print communication? Ann Behav Med 1999;21:2908. [53] Stewart MJ, Hart G, Mann K, Jackson S, Langille L, Reidy M. Telephone support group intervention for groups with hemophilia and HIV/AIDS and family caregivers. Int J Nurs Stud 2001;38:20925. [54] Brown R, Pain K, Berwald C, Hirschi P, Delehanty R, Miller H. Distance education and caregiver support groups: comparison of traditional and telephone groups. J Head Trauma Rehabil 1999;14:25768. [55] Evans RL, Halar EM, Smith KM. Cognitive therapy to achieve personal goals: results of telephone group counseling with disabled adults. Arch Phys Med Rehabil 1985;66:6936. [56] Colon Y. Telephone support groups: a non-traditional approach to reaching underserved cancer patients. Cancer Pract 1996;4:1569. [57] Glajchen M, Moul JW. Teleconferencing as a method of educating men about managing advanced prostate cancer and pain. J Psychosoc Oncol 1996;14:7387. [58] Gustafson DH, McTavish F, Hawkins R, Pingree S, Arora N, Mendenhall J, Simmons GE. Computer support for elderly women with breast cancer. JAMA 1998;280:1305. [59] Shaw BR, McTavish F, Hawkins R, Gustafson DH, Pingree S. Experiences of women with breast cancer: exchanging social support over the CHESS computer network. J Health Commun 2000;5:13559. [60] McTavish FM, Gustafson DH, Owens BH, Hawkins RP, Pingree S, Wise M, Taylor JO, Apantaku FM. Comprehensive health enhancement support system (CHESS): an interactive computer system for women with breast cancer piloted with an underserved population. J Ambulatory Care Manage 1995;18:3541. [61] Gustafson D, Wise M, McTavish F, Taylor JO, Wolberg W, Stewart J, Smalley RV, Bosworth K. Development and pilot evaluation of a computer-based support system for women with breast cancer. J Psychosoc Oncol 1993;11:6993. [62] Gustafson DH, Hawkins R, Pingree S, McTavish F, Arora NK, Mendenhall J, Cella DF, Serlin RC, Apantaku FM, Stewart J, Salner A. Effect of computer support on younger women with breast cancer. J Gen Int Med 2001;16:111.