Does a Peer Navigator Improve Quality of Life at Diagnosis?
David Spiegel , M.D. -
Caroline Bliss-Isberg , Ph.D. -
|Award Cycle:||2001 (Cycle VII)||Grant #: 7BB-2400S||Award: $772,073|
|Award Type:||CRC Full Research Award|
|Health Policy & Health Services>Health Policy and Health Services: better serving women's needs|
Initial Award Abstract (2001)
This study is designed to evaluate the effectiveness of a peer navigator program where a woman newly diagnosed with breast cancer is matched with a trained volunteer who is a breast cancer survivor. WomenCARE, a well-established Santa Cruz agency, and the Psychosocial Treatment Lab at Stanford, therefore, ask whether women newly diagnosed with breast cancer will improve their quality of life by participating in a peer navigator program. WomenCARE's Peer Navigator Program provides support, peer modeling, and information for women just diagnosed with breast cancer. Navigators and Sojourners (newly diagnosed women) are matched on group variables in individual rank order of importance. The pairs stay in close contact for a minimum of 3 months, up to 6 months if both agree. This proposal originated in Santa Cruz County. The peer-matched patient navigator concept emanated from the personal experiences of women participating in support groups at WomenCARE and two community-based, patient-focused collaborative meetings. Women across the socio-economic, cultural, educational and ethnic spectrum expressed the same level of need for mentors. These breast cancer survivors brought their ideas and enthusiasm to the scientists at Stanford. Thus, the study speaks directly to the BCRP belief that communities should be active participants in research about themselves. Using a BCRP Pilot Grant awarded in July 2000, the research team gathered and analyzed preliminary process data in preparation for a randomized trial. A community-wide network, including key media sources, has begun to disseminate preliminary findings. This network of agencies and doctors is poised to assure widespread dissemination of future findings as they become available This proposal is also responsive to the Priority Issue of enhancing quality of life at diagnosis and during treatment for breast cancer. The major hypothesis is that quality of life at diagnosis and in early treatment is enhanced by the presence of a peer navigator. The notion of a patient navigator is not unique and there are widespread peer assistance programs throughout the state. However, we believe that this proposal is unique in its quest to study long-term, criteria-matched, navigation by peers. We will use a randomized trial to test the effectiveness of the peer navigator intervention. An experimental group of at least 70 newly diagnosed women will receive a one-time consultation with a cancer professional and then be matched according to specified criteria with peer navigators who will provide support for a minimum of 3 months and up to 6 months. A control group of women will receive a one-time consultation with a cancer professional. Standardized quality of life assessments will be administered to both groups at 3, 6, and 12 months to assess whether peer intervention results in improving quality of life, self-efficacy, doctor-patient communication, post-traumatic growth while reducing depression and trauma. Since Navigators are also assessed, the impact of providing peer support will also be measured. If this project demonstrates that Peer Navigation is effective in improving a newly diagnosed woman’s quality of life, it could provide the impetus for improving the quality of similar programs, stimulate the formation of more programs, and provide evidence to support health policy changes to support peer navigation programs throughout California as a common component of standard treatment process. All women who participate in the study will benefit from receiving more and better-organized information than they would ordinarily receive
Final Report (2006)
We found in a previous pilot study funded by the BCRP that newly diagnosed women with breast cancer (sojourners) who were matched with a peer navigator improved significantly over the course of one year on their trauma symptoms, emotional well-being, cancer self-efficacy, and desire for information on breast cancer resources. Navigators (trained peer counselors with whom sojourners were matched) maintained baseline levels of these measures, but increased in dissatisfaction with their interactions with their medical team and increased emotional suppression. WomenCARE in Santa Cruz, and Stanford collaboratively conducted this initial study providing the background for their continued collaboration on the current clinical trial. In the current clinical trial of this peer navigator intervention, it was necessary to repeat the methodology of the previous study with the addition of randomizing the newly diagnosed women to either be matched with a navigator or to be in a control group. It was necessary to conduct this further study because the control group allows us to see whether the changes we saw in our first study would have happened whether or not these women received a navigator. In the current study, all newly diagnosed women (104 women) were recruited within 2 months of diagnosis. They all received a one-time nurse visit giving them information on local breast cancer resources, then half were randomized, through a process similar to a coin toss, to receive a navigator and half received no further intervention but filled out questionnaires over time at baseline, 3, 6, and 12 months. The women who received a navigator could have this intervention for up to 6 months. Sojourners (newly diagnosed and matched women) were matched with navigators on a list of preferences that they rank ordered. Peer navigators (36 peer counselors) had received a breast cancer diagnosis at least one year earlier. We trained them in listening skills and knowledge of local resources and supervised them once per month. Navigators also completed questionnaires at baseline 3, 6, and 12 months. We found that sojourners were significantly higher than controls on marital satisfaction by the end of the study, and decreased more on anxiety and distress if they were initially high on these measures. They also improved their ability to regulate their emotions by decreasing suppression if initially high, and increasing restraint of hostility if initially low. Navigators were able to provide this intervention with little change in their levels of psychosocial functioning, with the exception of a significant increase in distress. These results are preliminary and await the completion of the final follow-ups. At the end of the trial we will investigate further the meaning of these results by further analysis and by conducting focus groups with sojourners, controls, and navigators. A peer navigation intervention may decrease the human and economic cost of breast cancer.
Symposium Abstract (2005)
Women indicate the greatest needs for counseling at the time of initial diagnosis for primary breast cancer. However, this is the time when a woman, overwhelmed by shock and trauma, is least likely to absorb information provided or seek new sources of information. An informed peer navigator with carefully trained communication skills can judge the level of information to disclose and pace that information in a way that can be easily absorbed and understood. She can also provide support. WomenCARE, a well-established Santa Cruz agency providing free support services for women with cancer, and the Psychosocial Treatment Lab at Stanford therefore ask whether women newly diagnosed with breast cancer will improve their quality of life by participating in a peer navigator program. WomenCARE's peer navigators provide emotional support and information on resources for women just diagnosed with breast cancer. Having a peer counselor while a woman goes through treatment may reduce the magnitude of distress or shorten its time course. This study is designed to evaluate the effectiveness of a peer navigator program where a woman newly diagnosed with breast cancer is carefully matched for 3 to 6 months after diagnosis with a trained volunteer who is herself a breast cancer survivor. Navigators and Sojourners (newly diagnosed women) are matched on things that are important to them. We have found that most women want to be matched on the type of diagnosis, surgery, or treatment they have received. We assign half of the women (by a process similar to a coin toss) to our peer navigator program and half to a group that receives standard medical care but no peer navigator. All women who join our study, regardless of the group to which they are assigned, get an extra consultation with a nurse specialist who reviews the cancer resources available to the woman in Santa Cruz County. This meeting is tailored to the woman’s individual diagnosis and situation. Since the beginning of this study, we have successfully trained five new cohorts of Navigators (35). In addition we have successfully enrolled 92 Sojourners who have been randomized. We examined a preliminary set of data to see if quality of life was improving for Sojourners. We compared the first 22 Sojourners who received a Navigator to 21 women in the control group and compared the quality of life at randomization to quality of life 3 months later. We found that the women receiving a Navigator experienced a significantly greater reduction in anxiety, distress, desire for information about resources, and emotional suppression than the women in the control group. We also found that those receiving a Navigator experienced significantly greater improvement in marital adjustment and emotional well-being. If this project ultimately demonstrates that Peer Navigation is effective in improving a newly diagnosed woman’s quality of life, it could provide the impetus for improving the quality of similar programs, stimulate the formation of more programs, and provide evidence to support health policy changes. This could lead to peer navigation programs throughout California.
Symposium Abstract (2005)
The Peer Navigator Program provides information, one-on-one peer counseling and support to improve quality of life and reduce distress in women with newly diagnosed breast cancer (“Sojourners”). This study is designed to evaluate the effectiveness of a peer navigator program where a woman newly diagnosed with breast cancer is matched after diagnosis with a trained volunteer who is herself a breast cancer survivor (“Navigator”). About half of the Sojourners who enroll are randomly assigned to be matched with a navigator who provides peer counseling for 3-6 months. All women who join our study, regardless of the group to which they are assigned, receive additional information from an oncology nurse who reviews the cancer resources available to the woman in Santa Cruz County. This meeting is tailored to the woman’s individual diagnosis and situation. The ability to conduct a randomized study hinges on successful recruitment, yet there is little in the literature describing effective recruitment strategies. Through outreach to the medical community, we encourage physicians to refer prospective Sojourners to the study. Despite physician referral to psychosocial support services, women are often emotionally unable to initiate contact during the early stages of diagnosis. Because women often feel overwhelmed and in shock, this can become a barrier to seeking outside information and support. To facilitate referrals to the program, we developed a “Fax Referral Form” for providers to initiate a direct referral on their patients’ behalf. Direct referral removes this barrier for newly diagnosed women who may benefit from our intervention, but who are too overwhelmed to initiate contact. We tracked referral sources for all women referred to the study. Of the women referred to date, the majority (78%) were referred by the medical community, primarily physicians. About half (51%) of all referrals were “Fax Referrals,” primarily from surgeons and Cancer Resource Center staff. Most women (59%) who were referred via Fax Referral have enrolled in the study, often noting that their physician highly recommended the program as an important source of information and emotional support. Physicians, especially surgeons and oncologists, are in a unique position to link women to such services at the time of diagnosis. Physician-initiated discussion of peer support and counseling demonstrates concern for the patient’s well-being and also fosters positive doctor-patient communication. By providing physicians with a simple referral form, we (1) implemented a highly effective clinical trial recruitment strategy, and (2) increased awareness in the medical community of local psychosocial support services for women with breast cancer. Such outreach strategies targeted to the medical community could easily be adopted elsewhere, both to increase recruitment in psychosocial research studies as well as to improve access to local support services for women with cancer. Our experience conducting targeted outreach has important implications for community-based research and for cancer support organizations that seek effective ways to promote local support services for women with breast cancer.
Symposium Abstract (2010)
Lynne Wittenberg, M.P.H.,1 Maya Yutsis, Ph.D.,1 Janine Giese-Davis, Ph.D.,1,2,3 Caroline Bliss-Isberg, Ph.D.,4 Path Star, J.D.,1 Debra Houston, LMFT,4 David Spiegel, M.D.1
1Dept of Psychiatry & Behavioral Sciences, Stanford University School of Medicine
2 Department of Oncology, University of Calgary
3 Department of Psychosocial Resources, Tom Baker Cancer Centre, Alberta Health Services
Background: The goal of the Peer Navigator study was to examine whether matching women newly diagnosed with breast cancer (“sojourners”) with a trained peer counselor improves quality of life over the first year post-diagnosis. Of the 104 newly diagnosed women randomized to the study, 52 were randomly assigned to be matched with a peer counselor (“navigator”) (N=30), who is also a breast cancer survivor. Matched pairs had weekly contact for 3-6 months following the sojourner’s diagnosis.
Prior research indicates that increased distress in both women newly diagnosed with breast cancer and their spouses often predicts decreases in marital satisfaction. Peer support may alleviate some of the family-related distress. In this randomized trial of peer navigation, we found that women who were matched with a navigator significantly increased their marital satisfaction over 12 months compared with a control group who decreased.
Methods: Matched pairs completed contact rating forms during their match, as well as a marital satisfaction questionnaire at baseline, 3, 6 and 12 months. We hypothesized that certain topics (empowerment, expressing feelings) or positive affect ratings (e.g., understood, helped) reported in contact evaluations would predict this increase in marital satisfaction. We averaged ratings across all contact sheets (by woman) each sojourner and her navigator completed. We ran a stepwise forward regression using contact sheet data from 32 married sojourners to predict change over time in marital satisfaction. Independent variables included: total time spent in contacts, positive and negative affect ratings, and frequency of discussion topics.
Results: We found that sojourners reporting more frequent discussions of empowerment reported greater increases in marital satisfaction over 12 months in a linear all-in regression (p=.01). In contrast, we also found that sojourners’ mean negative affect ratings (e.g., frustrated, depressed), were associated with decreased marital satisfaction (p=.04). These were the only sojourner variables associated significantly with relationship satisfaction change. Next we conducted a second regression entering sojourner’s rating of empowerment discussions on the first step and navigator ratings of each of the contact sheet variables in the second step (stepwise forward for the latter). Significant additional variance was explained by navigators’ ratings of less frequent cancer resources discussions, which were associated with greater increases in marital satisfaction for sojourners (p=.002).
Conclusions: Peer discussions about empowerment and less time conveying information about cancer resources resulted in greater marital satisfaction for sojourners. By providing one-to-one peer support, navigators may have buffered rather than taxed sojourners’ marital relationships, thus contributing to improved marital adjustment. As navigators modeled ways to cope with and survive breast cancer, sojourners may have conceptualized this as “empowerment” when rating topics discussed during contacts. The peer navigator intervention may have improved sojourners’ coping behaviors and reduced anxiety and distress, which may also have improved their partners’ coping skills, resulting in greater relationship satisfaction. Our results demonstrate that peer counseling programs for women with breast cancer may improve spousal/partner relationships by relieving some of the emotional burden that partners often experience after a cancer diagnosis.
Symposium Abstract (2010)
Maya Yutsis, Ph.D.,1 Lynne Wittenberg, M.P.H.,1 Janine Giese-Davis, Ph.D.,1,2,3 Caroline Bliss-Isberg, Ph.D.,4 Matthew Cordova, Ph.D.,5 Path Star, J.D.,1 Debra Houston, LMFT,4 David Spiegel, M.D.1
1 Dept of
Psychiatry & Behavioral Sciences, Stanford University School of Medicine
2Department of Oncology, University of Calgary
3 Department of Psychosocial Resources, Tom Baker Cancer Centre, Alberta Health Services
5 Palo Alto Veterans Affairs Health Care System
Background: The Peer Navigator Clinical Trial evaluated the effectiveness of a one-to-one peer counseling program designed to improve quality of life and reduce distress in women with newly diagnosed breast cancer (“Sojourners”). Of the 104 newly diagnosed women randomized to the study, half (N=52) were randomly assigned to be matched with a trained and supervised peer counselor (“Navigator”) (N=30), who is also a breast cancer survivor. Matched pairs had weekly contact for 3-6 months following the Sojourner’s diagnosis.
Methods: Sojourners completed a contact evaluation form after each contact, as well as a trauma symptom questionnaire checklist (PCLC), among other measures, at baseline, 3, 6 and 12 months. We tested whether Sojourners’ report of positive and negative feelings and topics discussed during contacts with their Navigators was associated with a change in trauma symptoms using the PCLC.
Results: Sojourners who reported higher average positive feelings (e.g., helped, relieved) during contacts increased in total trauma symptoms over 12 months (β=.59, p=.01). In contrast, we observed a non-significant decrease in trauma symptoms (β = -.41, p=.059) among sojourners who reported higher average negative feelings (e.g., frustrated, afraid). Sojourners who reported more frequent expression of feelings (β = -.p=.04) and discussions of sexuality (r = -.34, p=.02) decreased (improved) in total trauma symptoms, while those who reported more frequent discussions of social issues decreased in arousal symptoms (a subset of trauma symptoms in the PCLC) (r = -.30, p=.04). In addition to these variables, the linear regression model included negative affect ratings, total time spent in contacts, and active coping discussions, which accounted for only 8% of the variance in change in PCLC.
Conclusions: Although we hypothesized that higher average positive affect ratings during contacts would predict a decrease trauma symptoms, the reverse was true, suggesting that Sojourners focusing on positive more than on difficult feelings during contacts with their Navigator may be hindered from confronting their cancer-related trauma. Medical professionals, family, and friends often assume that avoidant coping strategies and “being positive” will help women cope with their cancer. However, our results suggest that openly talking about negative feelings with a peer counselor may enable newly diagnosed women to process trauma associated with a recent cancer diagnosis. Our findings indicate that peer navigation programs that foster emotional expression of negative feelings often associated with diagnosis and treatment may lead to a reduction in trauma symptoms in women with breast cancer.