PATIENT PERSPECTIVES: Control of Symptoms and Side Effects of Metastatic Breast Cancer. Musa Mayer AdvancedBC.org

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1 PATIENT PERSPECTIVES: Control of Symptoms and Side Effects of Metastatic Breast Cancer Musa Mayer AdvancedBC.org

2 THE GOAL AND THE CHALLENGE Goal: Maintaining best possible quality of life, while keeping the cancer under control, for as long as possible. Challenge: Toxicities of continuous treatment. Chronic pain and other symptoms associated with metastatic sites. Symptomatic relapses from disease progression. Emotional stressors of living with an incurable, progressive, and ultimately fatal disease, for patients and families.

3 PERSPECTIVES: WHAT PATIENTS CAN TELL US They are living the experience. They know what they feel, and what they want. They depend upon you, their treatment team. Quality of life matters. So, ask the experts. They are eager to share their insights Photo: Rhoda Baer, Wikimedia Commons

4 CONTROL OF SYMPTOMS AND SIDE EFFECTS A NEW METASTATIC BREAST CANCER SURVEY (Musa Mayer and Susan E. Grober, PhD, September-October, 2013) 585 anonymous respondents living with MBC 91% survey completion rate From online support communities, breast cancer organizations (Metastatic Breast Cancer Network, METAvivor, others) Mean age 55, Caucasian, married, well-insured (expected for online convenience sample) Living with MBC mean of 3.7 years (range 0-21 years). More than a third (36%) still working.

5 FOCUS OF SURVEY QUESTIONS Members of patient-defined treatment team Symptoms and side effects during prior month. Degree of disruption of normal activities. Utilization of mental health services and emotional distress, depression, anxiety. Support by family, friends and patient peers. Emerging patient profiles. Treatment team ratings. Aspects of care valued by MBC patients in survey.

6 Medical Oncologist Oncology Nurse Radiation Oncologist Internist or CP Nurse Practitioner Physician s Assistant Mental Health Staff Surgical Oncologist Second-Opinion Oncologist CAM Practitioners (complementary/alternative medicine)

7 Fatigue Insomnia Diarrhea/Constipation Pain Cognitive Issues Hot Flashes Daytime Drowsiness Peripheral Neuropathy Weight Loss/Gain Emotional Upset/ Stress Sexual Problems Nausea * Top 12 of 24 symptoms/side effects surveyed

8 52% = Moderately + Very much + Severely impacted

9 IMPACT OF SYMPTOM BURDEN As normal activities were increasingly impaired by symptoms and side effects : Emotional support decreased from family and friends. Global ratings of treatment team decreased. Reported emotional upset and stress increased. with impairment, from only 13% in those impacted not at all to 87% in those impacted severely. More patients reported difficulty with disclosure. More patients worried about bothering their doctors, or being seen as complainers.

10 INCREASING SYMPTOMS AND QUALITY OF LIFE While reported only by a minority of patients overall, symptoms of anxiety and depression anxiety or panic attacks (26%), loss of interest in life (18%)and feelings of hopeless and despair (14%) increased with symptom burden. Only 2 out of 5 patients reporting these symptoms were seeing a mental health professional, or using therapy or counseling to cope with their symptoms. Peer patient support was valued highly (87%) by surveyed patients, regardless of symptom burden (but this reflects sample bias).

11 PATIENT DISCLOSURE ISSUES Most felt they could share their concerns freely. Those rating their teams highest were most able to share concerns. But nearly half found some issues difficult to discuss. A quarter to a half of patients reported being worried about bothering their doctors, or being seen as complainers. Those most impaired worried most. Nearly half said they were not being routinely asked about symptoms and side effects. One in six patients did not disclose side effects due to concern about being taken off a treatment that was working.

12 PATIENT PROFILES: GROUP ONE Group One patients reported fewer physical symptoms and experienced less emotional upset and distress, with normal activities not at all or little impacted at this early stage of metastatic disease although most did report fatigue and sleeplessness. These proactive patients said they disclosed freely, were assertive and took initiative in sharing symptoms and side effects with their treatment teams. They felt cared about, and participated in treatment decisions. They rated their treatment team highly across all dimensions.

13 PATIENT PROFILES: GROUP TWO Group Two reported more physical symptoms, more emotional upset and distress, anxiety and depression, and greater impairment of normal activities. They felt less well informed about treatment and were hesitant to assert themselves. Since their treatment teams did not take initiative in symptom assessment, and they were less likely to volunteer symptoms and side effects not wishing to bother their doctor or be seen as a complainer they were less likely to feel cared about by treatment team, feeling there was not enough time for their needs to be met. Group Two patients gave lower ratings of their treatment teams across most dimensions.

14 HOW PATIENTS SEE THEIR TREATMENT TEAMS Overall ratings of treatment teams were high: Very good 49% Good 31% Adequate 16% Poor or Very Poor 4% But one in five patients rated their care as only adequate, poor or very poor. Implications for less advantaged patient populations? Across almost all ratings, cross tabulations demonstrate that high patient satisfaction was closely correlated with positive aspects of care.

15 POSITIVE ASPECTS OF CARE Information-sharing Proactive treatment team behaviors Perceived caring Patient-friendly office procedures Handout available Patient communication and disclosure

16 ASPECTS OF CARE PATIENTS VALUE MOST (1) Consistent attention to quality of life, including the control of pain, nausea and other symptoms and side effects, as a concurrent goal with control/treatment of their cancer. Encouragement to openly share symptoms and side effects, including those difficult to discuss, without fear of bothering the treatment team, or being seen as a complainer. Routine assessment of symptoms and side effects by treatment team, preferably with a symptom checklist. Feeling listened to regarding symptoms and side effects. Within reason, sufficient time with oncologist and other members of the treatment team, especially for patients with many symptoms or who may have difficulty disclosing.

17 ASPECTS OF CARE PATIENTS VALUE MOST (2) The sense of being cared about as a person, having medical history remembered from visit to visit. Leaving office visits with important questions answered. Being involved in treatment decisions, and having options fully explained, including benefits and risks, possible side effects. Phone calls returned the same day, and extra appointments as needed for emergent problems requiring attention. Prompt communication and interpretation of test results. Openness to and facilitation of second opinions. Coordinated care among members of the treatment team, mental health professionals, and outside consulting specialists.

18 LESSONS LEARNED: MAKING GOOD CARE EVEN BETTER Use routine assessments of symptoms and side effects (e.g., a symptom checklist or distress thermometer). Let patients know: You re not complaining you re reporting, and this helps us to improve your care. Have staff ask about hard to talk about subjects, like sexuality, relationships, emotional issues. Symptom burden impacts emotional distress, consider referrals to mental health professionals as needed. Offer handouts that include peer support resources.

19 THANKS! To the 585 patients with MBC who took this pilot survey, especially those who offered feedback on the draft. Susan E. Grober, Ph.D. who helped with survey design and analysis Organizations and online communities who spread the word: o Metastatic Breast Cancer Network o METAvivor o Living Beyond Breast Cancer o The Young Survival Coalition o SHARE Self-Help for Breast and Ovarian Cancer o Breast Cancer Options o Inflammatory Breast Cancer Research Foundation o Breast Cancer Coalition of Rochester o Austin Breast Cancer Resource Center o HER2Support.org o BreastCancer.org o BCMets.org o IHateBreastCancer blog o And others I don t know about AdvancedBC.org musa@echonyc.com

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