Does a Peer Navigator Improve Quality of Life at Diagnosis?

Institution: Stanford University
Investigator(s): David Spiegel, M.D. - Caroline Bliss-Isberg, Ph.D. -
Award Cycle: 2000 (Cycle VI) Grant #: 6AB-1100 Award: $159,147
Award Type: CRC Pilot Award
Research Priorities
Community Impact of Breast Cancer>Health Policy and Health Services: better serving women's needs

Initial Award Abstract (2000)
This pilot study is designed to evaluate the feasibility of researching how well a peer navigator program improves quality of life when a woman newly diagnosed with breast cancer is carefully matched with a trained volunteer who is herself a breast cancer survivor. WomenCARE, a well-established Santa Cruz agency providing free support services for women with cancer is the community partner, and the Psychosocial Treatment Lab at Stanford is the research partner. The Peer Navigator program provides emotional support, peer modeling, and resource information for women just diagnosed with breast cancer. Navigators and sojourners (newly diagnosed women) are matched on dimensions (such as type of treatment) in rank order of importance. The pairs stay in close contact for a minimum of 3 months, and up to six if both agree.

Though such programs exist and serve many women in CA, no research is available to test their effectiveness or to inform the training of peer navigators. Our study Cruz would be followed by a larger randomized trial throughout the Central Coast Region of CA. 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 where breast cancer survivors were present. Women across the socio-economic and ethnic spectrum expressed the same level of need for mentors or peer navigators leading to the establishment of the program at WomenCARE. With the support of the two oncology practices, these Santa Cruz breast cancer survivors brought their ideas and enthusiasm to the scientists at Stanford University. Thus, the study speaks directly to the CBCRP belief that communities should be active participants in research about themselves.

This pilot grant is intended to test the feasibility and conduct a process evaluation of the peer navigator program. We will train peer navigators who are breast cancer survivors. They will be matched with 35-50 newly diagnosed women (about 3-4 per navigator), and be available for up to 4 contacts per week for 3 months. We will study what happens in these contacts and how the newly-diagnosed women and the navigators are affected by the contact. We will assess whether improvement in quality of life is related to how well these contacts proceed. We will also ask these women whether they would be willing to volunteer for a randomized study in which they had a 50/50 chance (like a coin toss) of being assigned to either a peer navigator or a control condition. We will conduct focus groups to receive feedback from the navigators and the newly diagnosed matched women. Finally, we will prepare to implement a larger study by developing referral networks and training navigators in Monterey and San Benito Counties. We expect that this project will allow us to lay the groundwork for demonstrating that Peer Navigation is effective in improving a newly diagnosed woman's quality of life. It could provide the impetus for expanding and improving the quality of similar programs, and provide evidence to support health policy changes enabling peer navigation programs to be a common component of standard treatment. All women who participate in the study will benefit from receiving more and better organized information than they would ordinarily receive, including information about how clinical trials work and how to participate in them. In addition to providing support, an informed peer navigator with carefully trained communication skills can judge the level and timing of information such that it would increase the likelihood of its comprehension.

Final Report (2002)
The Peer Navigator Program provides emotional support, peer modeling, survival modeling, and information on resources for women just diagnosed with breast cancer. This pilot study investigated how well a peer navigator program improves the quality of life of women newly diagnosed with breast cancer ("sojourners") when they are carefully matched with and mentored by a trained and supervised volunteer, who is herself a breast cancer survivor ("navigators").

This study addresses the needs of women from the time they are newly diagnosed with breast cancer through at least their initial treatment program. Women indicate the greatest needs for counseling at the time of initial diagnosis. However, many women do not seek formal counseling services due to feeling too overwhelmed to initiate contact, being unfamiliar with available resources and concerned about stigma in seeking counseling.

Navigators attend a comprehensive, one-day training seminar and monthly ongoing professionally-led, support/training sessions. Navigators and sojourners are matched on rank-ordered criteria indicating their individual preferences. Each navigator/sojourner pair makes a commitment to a 3-month relationship with at least one contact between them every week. Relationships can be renewed upon mutual agreement every three months. We recruited and trained 39 Navigators in 6 full-day training sessions. We also recruited and matched 42 Sojourners with Navigators according to each others' expressed demographic, and diagnostic/treatment preferences. Some Navigators were successfully matched more than once. Matches lasted from 4-6 months and some even longer by mutual choice. Our newly diagnosed women indicate a desire for peer support throughout the duration of active treatment. Our intervention is aimed at a prevention of loss of quality of life and prevention of an escalation of distress and trauma.

Our preliminary results demonstrate a stronger indication than we had guessed that women matched with a Navigator maintain their quality of life and actually improve in some areas. The pilot study also suggests that the more empathic and effective the Navigator, the better their Sojourner's quality of life. However, there was a suggestive trend cautioning us that the more successful Navigators showed some trauma and depression symptoms. Overall though, Navigators remain mostly unchanged with high levels of quality of life and low levels of distress on many of our outcome measures. Surprisingly, as the study progressed, they seemed to become less satisfied with their medical team. We are currently conducting a 3-year, BCRP-sponsored, randomized study to assess the effectiveness of the intervention and to extend the intervention geographically. All subjects in the full study receive a one-time counseling appointment with a cancer professional before being randomized to a peer counselor or to the control arm. All subjects are being assessed at baseline, 3 months, 6 months and 12 months. Based on indications in this pilot study, we urge organizations who have peer counseling and buddy programs to provide at least some training, supervision, and support of their volunteers as a caution against unintended consequences. We theorize that a carefully designed and conducted peer counseling program will reduce the human/economic costs of breast cancer in California by increasing a newly diagnosed woman's knowledge of strategies for making important medical decisions as well as her knowledge of available resources for dealing with her diagnosis. In addition, we theorize the newly diagnosed woman will experience increased quality of life from the emotional and psychological support she receives from a peer who has traveled the road before her.

Symposium Abstract (2005)
The Peer Navigator Program provides peer counseling and support to improve quality of life and reduce distress in women with newly diagnosed breast cancer. Peer Navigators--specially trained breast cancer survivors--provide emotional support and information to 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.

We conducted a non-randomized pilot study matching 42 newly diagnosed “sojourners” with 39 trained “navigators” who provided peer counseling for 3-6 months. All participants completed baseline, 3, 6, and 12-month assessments; 24 Navigators and 29 Sojourners provided at least one follow-up assessment.

We tested whether being married buffered Navigators and Sojourners from distress by conducting ANOVAs (married vs. not) for baseline and slope of change in depression (CES-D) and trauma (PCL-C) symptoms. We also tested whether marital status reduced the likelihood of Navigators re-experiencing trauma as they worked with their Sojourners.

No baseline associations between marital status and distress were significant for Navigators or Sojourners. In both Navigators (F (1,23) = 7.43, p = .02), and Sojourners (F (1,28) = 7.61, p = .01), single status was associated with increased slope of CES-D symptoms. Single status was not associated with increase in trauma symptoms over time in Navigators (F (1,23) = 3.99, p = .06), or Sojourners (F (1,23) = 0.25, p = .62); but was associated with Navigator PCL-C Re-experiencing subscale (F (1,23) = 6.59, p = .02).

Once matched with a Sojourner, Navigators who do not have the additional buffer of an intimate relationship show increases in depression and trauma symptoms. Single women seem especially vulnerable to re-experiencing the trauma of their own diagnosis while helping others. These results are consistent with earlier studies that suggest buffering effects of an intimate partner relationship for women with breast cancer. Our findings reinforce the importance of providing ongoing training and emotional support to Navigators who assist newly diagnosed women during their initial phase of diagnosis and treatment. This may be especially true for Navigators who are without other social support networks. These results have led us to make attendance at these meetings mandatory in our current randomized clinical trial. Few “buddy” programs provide mandatory supervision for their peer counselors. Our results indicate that this supervision is important and necessary to protect peer counselors.

In addition, unmarried Sojourners increased in depression symptoms over time, whereas married Sojourners decreased in depression symptoms. Because we did not have a control group in this pilot study, we do not know whether having a peer navigator helped to buffer this increase in distress over time in single women with breast cancer. Future programs may want to specifically train peer counselors of single women with breast cancer to be especially sensitive to the possibility of increased depression over time and provide information on community resources to further support these women.

Symposium Abstract (2007)
This study evaluated whether matching a woman newly diagnosed with breast cancer for 3 to 6 months after diagnosis with a trained volunteer who is herself a breast cancer survivor improves quality of life over the first year post-diagnosis. 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 will 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 conducted a randomized clinical trial of peer navigation.

In our study, Navigators and Sojourners (newly diagnosed women) were matched on things that were important to them. We assigned 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 joined our study, regardless of the group to which they were assigned, received an extra consultation with a nurse specialist who reviews the cancer resources available to the woman in Santa Cruz County. This meeting was tailored to the woman’s individual diagnosis and situation.

Since the beginning of this study, we trained 36 Navigators. In addition 104 newly diagnosed women were randomized (52 receiving a match with a Navigator). We found that the women receiving a Navigator significantly increased on marital satisfaction while those in the control group decreased (p=.02), and greater breast-cancer-specific quality of life (p=.01). Women receiving a Navigator who were highly distressed at study entry also experienced a significantly greater reduction in anxiety (p=.03), distress (p=.04). However, those not matched with a Navigator who were low on Post-Traumatic Growth at baseline significantly increased to a greater extent than did those matched.

This first randomized clinical trial of an extensive peer counseling program demonstrates that being matched with a Peer Navigator appeared to mitigate the distress newly diagnosed women often experience as they are undergoing treatment for breast cancer. It is also clear that not having a peer counselor may stimulate women to perhaps put more thought and energy into self-motivated growth post-diagnosis.

We believe that this evidence indicates that this program is important and its dissemination may improve the quality of similar informal programs, stimulate the formation of more programs, and provide evidence to support health policy changes. This could lead to effective peer navigation programs throughout California.

Marital Status Predicts Change in Distress and Well-being in Women Newly Diagnosed With Breast Cancer and Their Peer Counselors
Periodical:The Breast Journal
Index Medicus:
Authors: Lynne Wittenberg, Maya Yutsis, Sharee Taylor, Janine Giese-Davis, C Bliss-Isberg, P Star,
Yr: 2010 Vol: 16 Nbr: 5 Abs: Pg:481-489