Psychosomatics 48:426-432, September-October
doi: 10.1176/appi.psy.48.5.426
© 2007 Academy of Psychosomatic Medicine
Patient Preferences Regarding Cancer Group Psychotherapy Interventions: A View From the Inside
Allen C. Sherman, Ph.D.,
Jaymie Pennington, M.D.,
Umaira Latif, M.Sc.,
Harriet Farley, L.C.S.W.,
Lenore Arent, L.C.S.W., and
Stephanie Simonton, Ph.D.
Received March 31, 2006; revised June 5, 2006; accepted July 6, 2006. From the Dept. of Behavioral Medicine, the Dept. of Social Work, and the Dept. of Internal Medicine, AR Cancer Research Center, University of Arkansas for Medical Sciences, Little Rock, AR. Send correspondence and reprint requests to Allen C. Sherman, Ph.D., Behavioral Medicine, #756, University of Arkansas for Medical Sciences, Little Rock, AR. e-mail: ShermanAllenC{at}uams.edu
© 2007 The Academy of Psychosomatic Medicine
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ABSTRACT
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Group interventions for cancer patients have commanded notable interest among investigators, but utilization rates are low and little is known about the features that patients themselves deem most important. The authors examined the views of potential participants, among 425 patients with diverse malignancies. A large number (64.6%) expressed interest, although few had attended a group. Preferences were strongest for interventions convened during diagnostic or active treatment periods rather than later, and those focusing on medical education or health-promotion, rather than emotional support or coping. Most were amenable to drop-in formats and to heterogeneous membership. In subgroup analyses, preferences were associated with disease site and not strongly related to psychosocial or demographic predictors. Understanding patient preferences may be critical for successful program development and utilization.
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INTRODUCTION
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Individuals with cancer often experience a host of stressful changes in physical and emotional spheres of functioning during the course of their illness. Although most adapt well to these challenges, many experience difficulties with emotional distress, functional impairment, or role disruption.1,2 In recent years, cancer support groups have become increasingly available in both medical and community settings. In outcome studies, professionally-led groups have been associated with improved emotional well-being, coping, and physical functioning.3–6 Peer-led self-help groups have garnered considerable interest as well, but there have been fewer evaluations of their efficacy.
Despite empirical support for the efficacy of group services, it is widely acknowledged that they are greatly underutilized. The number of patients who have attended cancer support groups ranges from 3% to 31% in surveys conducted in naturalistic settings (excluding clinical trials that involve extensive recruitment efforts),7–11 and those who participate tend to be overrepresented by white, female, younger, higher-income, better-educated individuals;4,7,11–15 see Guidry et al.9 for contrasting results). Overcoming barriers to care remains a major concern.
Although investigators are beginning to explore impediments to group participation,7–9,11,16–19 we have surprisingly little data about what types of services patients themselves would like.15,20,21 There have been very few large, systematic studies of patient preferences. Clearly, clinicians and program planners require a greater understanding of the types of treatment goals, group structure, and group processes that cancer patients desire.22
One area that merits further investigation concerns treatment goals, which vary considerably among the intervention models that have been developed.3,6,23 To what extent do patients seek a forum for emotional expression and support, and to what extent would they prefer a focus on other aspects of recovery, such as medical information, health-promotion, or stress-reduction skills? Do these preferences vary in meaningful ways among patients with different illness characteristics or cultural backgrounds? Furthermore, there is uncertainty about when in the course of illness group interventions should be offered. Different needs emerge at different phases of illness;23 the priorities experienced during the initial crisis of diagnosis may differ from those experienced during other critical periods in the trajectory of care (e.g., end of active treatment, long-term recovery, recurrence, etc.).
Understanding patient preferences might also shed light on important structural questions regarding group composition and group format. Many groups are directed toward specific disease sites (e.g., breast cancer); these focused groups help participants identify more readily with other members and accelerate group cohesion. However, establishing a large number of homogeneous, site-specific groups can be difficult for treatment centers, which may not have sufficient staff or referrals to support them.19,23 Clinicians also struggle with decisions regarding group format. Drop-in groups offer maximum outreach in busy medical centers, particularly where patients may be available only intermittently as they travel far from home. Although these groups have a critical role to play, it is evident that shifting membership and open boundaries are not conducive to the kind of sustained therapeutic work that can be pursued in closed-membership groups, which offer a different clinical experience. To what extent do these structural issues influence patients’ inclinations to participate?
The current investigation was designed to address an important gap in the literature by examining patients’ attitudes and preferences, using a large, diverse sample at an academic cancer center. We sought to capture the views of a broad range of patients served by the institution, rather than only those who had previously participated in support groups. The study examined how many patients expressed interest in groups and what features they considered most important. In particular, we examined preferences regarding treatment goals, group format, timing of the intervention, and homogeneity versus heterogeneity of illness characteristics.
We also examined several critical factors that might shape patients’ preferences. Specifically, we evaluated whether interest in groups was influenced by 1) recommendations from physicians or family/friends to attend a group (cues for action). Physician recommendations are known to predict a number of health behaviors, and, more broadly, social influences are highlighted in several theoretical models (e.g., the Theory of Planned Behavior24 and the Health Belief Model25). We also evaluated 2) social support, which has been thought to affect use of support groups, although earlier research findings have been mixed.7,8,20 We anticipated that each of these factors would have a significant bearing on patients’ interest in groups. Finally, we assessed 3) whether preferences were associated with differences in medical variables (e.g., time since diagnosis/phase of treatment, disease site, tumor burden, on- versus off-treatment) or demographic characteristics (e.g., gender, age, rural versus urban residence).
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METHOD
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Participants
Data for this study come from a larger project on use of cancer support groups. A separate report26 examined determinants of previous utilization. The current article focuses on patients’ interests and preferences. Participants were 425 outpatients with varied diagnoses being treated at Arkansas Cancer Research Center. Exclusion criteria included time since diagnosis <4 months (since these patients would not yet have had much opportunity to consider group services), severe cognitive impairment, and inability to read English. In order to support subgroup analyses, we doubled recruitment for three of the most prevalent disease sites treated at this center: breast cancer, multiple myeloma, and lung cancer. Because the course of illness differs markedly among these three diagnostic groups, they offer a good model for examining how disease characteristics might shape utilization of support services. The majority of women with breast cancer are diagnosed with early-stage disease and have favorable prognoses. Lung cancer patients often are diagnosed with advanced disease, and outcomes typically are poor. Those with multiple myeloma often require ongoing, aggressive treatment (e.g., stem-cell transplantation), and median survival rates generally fall between those of early-stage breast cancer and advanced lung cancer. Patients with other disease sites were recruited in proportion to their prevalence at the cancer center, in accord with the 2001 tumor registry.
A total of 520 individuals were contacted in the clinics; 95 patients declined, a refusal rate of 18.3%. Table 1 summarizes sample characteristics The percentage of patients enrolled from each diagnostic group was consistent with the percentage targeted, except that gynecological cancers were underrepresented, and hematological cancers were somewhat overrepresented. Median time since diagnosis was 16 months (range: 4–306 months). The sample was diverse with respect to socioeconomic status and geographical region.
Procedures
Participants completed a consent form and an anonymous written survey during their routine clinic visits. The project was approved by the center’s institutional review board.
Measures
Demographic and Medical Variables
Information was obtained regarding participants’ demographic, disease, and treatment characteristics. Because data were collected anonymously, we were not able to confirm medical variables by chart review.
Patient Preferences
An author-constructed survey, derived in part from the Health Belief Model25 and previous research,27 was used to assess patients’ perceptions of support groups. Patients were asked about their interest in attending a cancer support group if one were available (1: Yes; 2: No). Subsequent items, listed in Table 2, addressed the types of groups preferred. Attitudes about treatment goals were assessed by two items: respondents were asked to rank-order the most important focus of the group; a second item asked them to select their primary motivation for wanting to attend. Additional categorically-coded items inquired about: 1) the most useful timing of groups; 2) the format of groups; 3) the heterogeneity of cancer diagnoses among the participants; and 4) the inclusion of spiritual concerns.
Psychosocial Factors
Cues were assessed by two items that inquired 1) whether the doctor or nurse had informed the patient about cancer support groups (1: Yes; 2: No); and 2) whether family or friends had recommended them (1: Yes; 2: No). Social support was assessed by an item concerning availability of a confidant with whom to discuss the illness (i.e., emotional support — 1: "Not at all;" 5: "Quite a bit") and an item regarding involvement in volunteer organizations (i.e., social integration — 1: Yes; 2: No).
We had used many of these survey items in previous focus-group research with cancer patients,27 but psychometric support for their validity is not available, as is typically true for survey studies.
Data Analysis
Item responses were summarized with descriptive statistics. Relationships between patient preferences and demographic, medical, and psychosocial predictor variables were evaluated with chi-square or Fisher’s exact test (for categorical variables), and Mann-Whitney U tests and Kruskal-Wallis one-way analyses of variance (for continuous variables), as appropriate. Tests were two-tailed. As partial adjustment for multiple tests, we accepted p values <0.01 as significant.
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RESULTS
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Interest in Group Services
Although only a few patients had attended a cancer support group in the past, a large number (64.6%) reported that they were interested in attending one. Interest did not differ by gender or other demographic characteristics (i.e., age, education, ethnicity, marital status, employment status, income, geographical region). Disease site was marginally tied to interest: individuals with breast cancer or multiple myeloma were more inclined toward groups than those with lung cancer or other malignancies (p <0.05). Other disease characteristics (i.e., time since diagnosis, on- versus off-treatment, history of recurrence, tumor burden, remission status) were not significant correlates, nor were cues for action (i.e., recommendations from physicians, recommendations from family/friends), or indices of social support (i.e., having a confidant, being involved in volunteer organizations) related to interest in group participation.
Preferences Regarding Groups
Among those who expressed an interest in groups (N=272), we examined preferences regarding important features of these interventions; findings are summarized in Table 2.
Treatment Goals
When asked to rank-order their goals for participating, patients cited medical information (38.2%) as their most prominent motivation, followed by learning about health-promotion or wellness (29.8%). Emotional support (19.9%) and coping skills (10.7%) received lower ratings. Results were similar when the inquiry was framed somewhat differently: medical information was more appealing than other potential benefits (e.g., being with others fighting the same illness, helping others).
Post-hoc analyses indicated differences across disease sites: patients with breast cancer or multiple myeloma expressed greater interest in medical information and in coping skills, whereas those with other diseases were more drawn toward health-promotion/wellness ( 2[3]=25.55; p <0.0001). Other differences among subgroups were less pronounced: younger patients were marginally more interested in assistance with coping, whereas their older peers preferred medical education and emotional support (p <0.05). Married individuals were marginally more interested in medical education and emotional support than their unmarried counterparts, who were more drawn toward health-promotion and coping (p=0.05).
Timing of the Intervention
With respect to optimal timing, most respondents preferred to participate immediately after diagnosis (51.1%) or during the course of active medical treatment (30.9%). Very few were drawn to groups during later phases of treatment or recovery.
Group Format
The majority of patients preferred a drop-in format (64.7%), rather than a group with closed membership and a preset duration (34.2%). Post-hoc analyses revealed that this preference was clearer among men (2[1]=9.62; p <0.01); women were more evenly divided.
Group Membership
Respondents had mixed views about the preferred composition of a group. Many (43.8%) were amenable to including members with diverse types of cancer, but some (25.4%) preferred a diagnostically homogenous group, and others were unsure (29.4%). Patients with breast cancer or multiple myeloma were more opposed to heterogeneous groups than were individuals with other types of disease (2[2]=35.43; p <0.00001). Non-white patients (p <0.05), unmarried individuals (p <0.05), and those with no history of recurrent disease (p <0.05) were all marginally more receptive to medically diverse groups.
Spirituality
Finally, most patients (82.3%) were interested in including spiritual concerns among the topics addressed; a small number perceived this as inappropriate or were unsure.
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DISCUSSION
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Extensive efforts have been directed toward establishing the efficacy of group interventions for cancer patients, but there is little systematic information available about what types of services patients themselves would like. The need for this kind of information is more pressing in light of indications that these groups have low utilization rates. The current investigation examined the views of a broad sample of patients with diverse malignancies who were receiving care at a large cancer center. We sought to determine how many patients might be interested in therapy groups, what types of interventions they deemed most important, and whether these preferences varied among subgroups of patients.
Interest in Group Interventions
As in previous studies,7–11 only a few patients (8.0%) had previously participated in any type of cancer support group,26 but a surprisingly high number (64.6%) expressed interest in doing so. The level of interest did not differ by gender, age, or socioeconomic status. These findings are encouraging because they suggest that potential receptivity to groups is not limited to certain social strata. Contrary to our hypotheses, neither cues for action (recommendations from physicians or from family/friends) nor social support (availability of a confidant; involvement in organizations) were linked with interest in groups. There was a trend for individuals with certain malignancies (breast cancer, multiple myeloma) to express greater interest. These findings suggest that outreach efforts might focus on diagnostic groups that have received less attention from the media and from mental health professionals (e.g., lung cancer, head-and-neck cancer).
Patient Preferences
What kind of group interventions do patients deem most important? In the current study, respondents preferred groups that focused on medical education or wellness/health-promotion (e.g., nutrition, exercise) rather than emotional support or coping skills. That is, they were most concerned with obtaining practical information about their current illness and about improving their future health. The importance ascribed to medical information, as opposed to other goals, is consistent with a few earlier studies.7 In the present investigation, these preferences were strongest among subgroups of patients with breast cancer and multiple myeloma, who had expressed the greatest overall interest in cancer groups. We did not find strong evidence for differences among other medical and demographic subgroups.
Participants in this study varied widely in their phase of treatment. Nevertheless, almost all preferred services in the immediate aftermath of diagnosis or during active treatment, rather than during later phases. These results are consistent with the recent emphasis in the literature on early screening and early intervention.10,28 The needs of long-term survivors remain understudied,29 and, clearly, groups may have an important role to play. Overall, however, patients seem most strongly focused on the challenges associated with the earlier phases of illness.
With respect to the structure of groups, a drop-in format was preferred to a closed-membership group, at least among men. A plurality of respondents was amenable to participating in heterogeneous groups whose members had diverse types of cancer. This finding may be somewhat reassuring to facilities that cannot offer separate groups for each disease site. However, some of the individuals most interested in groups (those with breast cancer or multiple myeloma) were the most opposed to diagnostically heterogeneous groups.
Finally, most respondents indicated that spiritual concerns should be among the areas addressed in groups. A life-threatening illness often evokes difficult existential issues,23,30 which family and physicians may be reluctant to discuss for fear of upsetting the patient or because of their own discomfort. Moreover, connections between spirituality and health have received growing attention lately in both the popular and professional press.31 It appears that most patients would value a chance to explore these issues within a group setting.
The current findings may have useful clinical implications. Of course, patient preferences should not be the sole determinants of group design. The elements that patients anticipate will be appealing and those that they actually find helpful after being immersed in the process may differ considerably. (That is, motivations for initial attendance and motivations for continued engagement may differ.) Among women participating in breast-cancer groups, for example, Stevens and Duttlinger20 found that new members identified medical information as the most helpful feature, whereas established members pointed to coping skills and sense of community. Similarly, although men appear less inclined to enroll in cancer groups12,32 and may prefer a focus on education rather than emotional support,12,15 once involved in a group, they appear to value the same elements that women do and remain engaged just as long.15 Thus, clinical and research experience remain important guideposts in designing interventions. Nonetheless, the current results regarding patient preferences might be helpful in planning, timing, and marketing group services. In particular, brief interventions that highlight medical information early in the course of care may resonate well with patients’ needs and interests.
These results also seem consistent with several conceptual frameworks that have been proposed to help guide clinical decisions about which types of interventions might be offered to which types of patients.19 Most of these models suggest a stepped-care approach to group services.3,23,33 As a first step, consistent with the preferences expressed in this study, brief educational programs provide medical information during the early diagnostic/treatment period. These programs are followed by more specialized, time-limited groups, which focus on support, coping skills, and quality of life, ideally targeting patients with similar disease characteristics. Subsequently, patients with greater needs or more advanced disease might be directed toward longer-term, more interactive groups that emphasize emotional and existential exploration. Clearly, this is not the only way to organize interventions, but this type of stepped-care approach may be useful in accommodating some of the preferences noted in the current study.
Contrary to expectations, we did not find strong ethnic differences in the preferences expressed. The number of minority patients enrolled reflected their representation at the cancer center, but these subgroups were small; there remains a critical need for further culturally-informed research.9,18 In our previous focus-group research with breast-cancer patients,27 African American women were more likely than white women to cite shame and stigmatization as barriers to use of support groups, and were more interested in including spiritual dimensions.
Among the strengths of this study were the large, heterogeneous sample and consideration of psychosocial, medical, and demographic correlates of patient attitudes. In contrast to some previous studies, the protocol’s inclusion criteria were designed to ensure that patients had had sufficient time (i.e., a minimum of 4 months) to consider their feelings about groups. However, this investigation had several important limitations. This report and its parent project26 encompassed a large number of analyses, so results should be interpreted conservatively. Although we constructed the assessment tool on the basis of previous research and theory, it is a survey, rather than a standardized measure with established psychometric properties. Moreover, additional qualitative research would help deepen and enrich the inquiry. Finally, it is unclear whether different findings would emerge in cancer centers treating a different mix of diagnoses or in other geographical regions.
Understanding patient preferences is a critical but neglected component of planning appropriate support services. Current results suggest that although few patients have used support groups, there may be notably broader interest in doing so. In particular, groups that focus on educating patients about their medical illness, or, subsequently, on health-promotion and wellness, may have the greatest appeal, particularly when offered early in the course of care.
This article was based in part on data presented at the Annual Meeting of the Society of Behavioral Medicine, Baltimore, MD, March 2004.
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- Leszcz M, Sherman AC, Mosier J, et al: Group interventions for patients with cancer and HIV disease, part IV: clinical and policy recommendations. Int J Group Psychother 2004; 54:539–556[CrossRef][Medline]
- Stevens MJ, Duttlinger JE: Correlates of participation in a breast cancer support group. J Psychosom Res 1998; 45:263–275[CrossRef][Medline]
- Stevenson BS, Coles PM: A breast cancer support group: activities and value to mastectomy patients. J Cancer Educ 1993; 8:239–242[Medline]
- Coyne JC, Duan N, Barg F, et al: The crisis of psychosocial intervention in cancer and quality engineering as a resolution (abstract). Ann Behav Med 2001;23(suppl):S122
- Simonton S, Sherman A: An integrated model of group treatment for cancer patients. Int J Group Psychother 2000; 50:487–506[Medline]
- Ajzen I: The theory of planned behavior. Organizational Behav Human Decision Processes 1991; 50:179–211[CrossRef]
- Stretcher VS, Rosenstock IM: The Health Belief Model, in Health Behaviors and Health Education: Theory, Research and Practice. Edited by Glanz K, Lewis FM, Rimer BK. San Francisco, CA, Jossey-Bass, 1997, pp 41-59
- Sherman AC, Pennington J, Simonton S, et al: Determinants of participation in cancer support groups: the role of health beliefs. Int J Behav Med (in press)
- Simonton S, Sherman A, Adams D, et al: Barriers to support services for cancer patients. Ann Behav Med 2000; 22(suppl):S196
- Carlson LE, Bultz BD: Cancer distress screening: needs, models, and methods. J Psychosom Res 2003; 5:403–409
- Kornblith AB: Psychosocial adaptation of cancer survivors, in Psycho-Oncology. Edited by Holland JC. New York, Oxford University Press, 1998, pp 223-354
- Parker CM: Psychosocial transitions: a field of study. Soc Sci Med 1971; 5:101–115[Medline]
- Plante TG, Sherman AC (eds): Faith and Health: Psychological Perspectives. New York, Guilford, 2001
- Cella DF, Sarafian B, Snider PR, et al: Evaluation of a community-based cancer support group. Psychooncology 1992; 2:123–132
- Cunningham A, Edmonds CVI: Group psychological therapy for cancer patients: a point of view and discussion of the hierarchy of options. Int J Psychiatry Med 1996; 26:51–82[Medline]
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ABSTRACT
INTRODUCTION
