Survivorship: What women need after breast cancer

Transcription

1 EICHER, Manuela Survivorship: What women need after breast cancer EBCC GLASGOW MARCH 2014 EUROPA DONNA SESSION: Survivorship 19. March 2014

2 SURVIVORSHIP: SOME REFLECTIONS ON THE CONCEPT I considered myself to be a survivor from the day I was diagnosed because that s what I intended to do and that s what I am doing. I am surviving this. Breast cancer is still part of my life. I hate that term [survivor], I do not consider myself a breast cancer survivor. I am someone that had cancer and it s gone. So I just - I don t even put myself in that category. you know you re not a diabetes survivor or heart attack survivor so why breast cancer? Being a survivor inspires me Having breast cancer should not define you M.E. Brennan et al. / The Breast 20 (2011)

3 LIVIN WITH AND BEYOND BREAST CANCER: IMPORTANCE OF INTEGRATED FOLLOW-UP CARE The one thing I did find, I sort of fell in a hole, because you were really, really busy there for a while. You were having chemo, you were having radiotherapy, you were driving here, driving there, and then all of a sudden it stopped. I would like to know that it s normal to feel down when it s over and the rush stops. National Cancer Survivorship Initiative UK: LIVING WITH AND BEYOND CANCER: TAKING ACTION TO IMPROVE OUTCOMES

4 DO WOMEN WITH BREAST CANCER HAVE MORE SUPPORTIVE CARE NEEDS? Boyes et al. BMC Cancer 2012, 12:150

5 WHAT WOMEN NEED AFTER INITIAL BREAST CANCER TREATMENT E.E.J. Pauwels et al. / Psycho-Oncology 22 (2013):

6 MACMILLAN CANCER SUPPORT S 10 TOP TIPS FOR PATIENTS 1. Discuss your needs with a healthcare professional at the end of treatment 2. See a copy of your end-of-treatment assessment and care plan 3. Find out who is your ongoing main contact 4. Be aware of any post-treatment symptoms 5. Get support with day-to-day concerns 6. Talk about how you feel 7. Take steps towards healthier living 8. Find out more about what to look out for if you are worried about treatment side effects or the cancer coming back 9. Monitor your own health and go to your follow up appointments 10. Make suggestions based on your experiences of treatment and care National Cancer Survivorship Initiative UK: LIVING WITH AND BEYOND CANCER: TAKING ACTION TO IMPROVE OUTCOMES

7 SURVIVORSHIP CARE PLANS The professional view The patient view Women said that as well as information about what is ahead in follow-up they would like information about: the original cancer diagnosis, ways to help friends and family understand why she wasn t back to normal, long-term symptoms to expect, information for partners, information about breast reconstruction, and about what happens if cancer recurs. M.E. Brennan et al. / The Breast 20 (2011)

8 SURVIVORSHIP CARE PLANNING: CURRENT EVIDENCE Comprehensive Survivorship Care Plan (compiled in a binder, reviewed with the patient during a 30-minute educational session with a nurse): prescribed elements, including a personalized treatment summary, a patient version of the Canadian national follow-up guideline a summary table of the guideline that served as a reminder system a resource kit tailored to the patient s needs on available supportive care resources. These documents were also sent to the patient s primary care provider together with the full follow-up guideline, a user-friendly summary version, and a reminder table.

9 SURVIVORSHIP CARE PLANNING: CURRENT EVIDENCE Overall, 408 survivors were enrolled through nine tertiary cancer centers. There were no differences between groups on cancer-related distress or on any of the patient-reported secondary outcomes. The results do not support the hypothesis that Survivorship Care Plannings are beneficial for improving patient-reported outcomes.

10 HOW COULD WE IMPROVE SURVIVORSHIP CARE PLANNING: THE PATIENT VIEW Psychological well-being/coping I think the thing that doesn t get talked about is your psychosocial needs and, you know, how you re feeling emotionally, and suggestions for help in that area. I mean, I ve heard this from lots of women, it s not just me; that doesn t get raised really. Need for care by someone who has time There is that feeling that I d like 10 minutes rather than five minutes, if you know what I mean? I need more time. Need for care by someone who knows me and my history; continuity of care and long-term relationship And I think just on a personal basis too you re not having to re-explain yourself over and over each time you see someone new. While I think it might be good to have somebody to come in and see you from a different point of view on occasions, I feel more comfortable seeing the same person all the time, I feel like I need continuity of care.

11 SOURCES OF SUPPORT: WOMENS PREFERENCES E.E.J. Pauwels et al. / Psycho-Oncology 22 (2013):

12 HOW TO COORDINATE SUPPORT FOR WOMEN After finalisation of active treatment, the follow-up period should not begin without the team s elaborating a joint survivorship care plan with the patient. In accordance to tumour-site requirements, such a plan should specify two areas of care: (i) routine surveillance of a possible relapse and (ii) post-treatment needs, including rehabilitation, well-being actions and reintegration into the workforce. Patients should be able to identify a responsible physician at every stage of the care process. In addition, there should be a designated case manager or other professional responsible for communicating with patients across the various stages of care in order to ensure adequate communication. In this regard, improvement of the patient experience, with special focus on the specific needs of disadvantaged individuals, should be considered a key element of the quality of care.

13 BREAST CARE NURSES: SUPPORT TO LIVE WITH AND BEYOND BREAST CANCER AS CENTRAL ELEMENT Eicher, Kadmon et al. (2012): European Journal of Cancer, 48,

14 ROLE OF BCNS ALONG THE DISEASE TRAJECTORY Assesses the physical / psychosocial status of people affected by breast cancer. Refers or intervenes as appropriate. Provides education and information to people affected by breast cancer and their significant others Acts as an integral part of the multidisciplinary team and takes a key role in co-ordinating care. Diagnosis Treatment Follow-Up Survivorship / Rehabilitation EONS BCN post basic curriculum; 2009

15 PATIENT NAVIGATION: AN ALTERNATIVE APPROACH NOT ONLY FOCUSING ON NURSING INTERVENTIONS Patient navigation is defined as individualized assistance offered to patients, families, and caregivers to help overcome healthcare system barriers and facilitate timely access to quality health and psychosocial care from prediagnosis through all phases of the cancer experience.

16 WHO CAN BE A NAVIGATOR AND WHAT DO THEY DO? Who? Patient navigation services frequently are provided by a lay patient navigator although several programs described navigators with undergraduate degrees, master s degrees, nurse practitioners or nurses, social workers, health educators, clinic staff members, research assistants, and cancer survivors. Typically, patient navigators are paid personnel rather than volunteers. What? overcoming health system barriers providing health education about cancer across the cancer continuum from prevention to treatment addressing patient barriers to cancer care providing psychosocial support. K. J. Wells et al. (2008). Cancer, 113(8),

17 EXAMPLE: NAVIGATION IN A COMPREHENSIVE COMMUNITY CENTER RESULTS OF A PILOT STUDY Campbell (2010), Oncology Nursing Forum, 37,

18 QUALITY INDICATORS TO MOTIVATE CENTERS TO ADRESS SUPPORT AND REHABILITATION: US- EXAMPLE

19 QUALITY INDICATORS TO MOTIVATE CENTERS TO ADRESS SUPPORT AND REHABILITATION: EUROPEAN EXAMPLE Roselli Del Turco et al. (2010): Quality indicators in breast cancer care. EJC 46 p

20 INCREASE COLLABORATION WITH PATIENT EXPERTS: THE SWISS EXAMPLE

21 TAKE HOME MESSAGES Women living with and beyond breast cancer have specific needs like physical and psychological functioning, self and body image, sexuality, relationship with partner and others, as well as return to work issues. Their individual needs should be assessed at the end of initial treatment and an individual care planning should be provided. The support for women living with and beyond cancer is a central element for breast care nurses or patient navigators. They should be available for patients to prepare care planning including a referral to appropriate support. We need further research how to best provide care to women living with and beyond breast cancer in the future and develop quality criteria that allow to audit such care.

22 Merci de votre attention! Haute école de santé Fribourg Hochschule für Gesundheit Freiburg Rte des Cliniques 15, 1700 Fribourg/Freiburg Tél