Breast Cancer

“HOW CAN I SWIM IN A STORM” Presented by Gertrude Nakigudde-CEO Uganda Women’s Cancer Support Organisation(UWOCASO) November 2nd 2017 ABC4 Conference INTRODUCTION- “THE STORM” ABC4 Conference FACING ADVANCED BREAST CANCER ADVANCED BREAST CANCER COMES WITH:- .Fear of death and rejection .Anger .Disappointment .Pain .Loss of faith in the creator .Limited access to supportive services .Limited access to drugs .Limited information .Sky rocketing bills .Self blame When patients are facing Advanced breast cancer ” They face a storm” there are specific needs that must be met, challenges and gaps that are supposed to be addressed to help them tread through the storm. ABC4 Conference SPARC MBC challenge project Objectives of the study; i. To assess healthcare providers’ and families ’ knowledge of clinical and psychological needs of MBC patients; ii. To identify challenges and the gaps in meeting the needs of MBC patients The study involved; 422 Study participants including: 67 MBC patients (15.9%) 185 survivors of breast cancer (43.8%) 170 providers [134 family caregivers, 24 clinical providers (doctors and nurses) and 12 VHTs ] (40.3%) Methods •Interviews •In-depth Interviews •Focus group discussions •Document review Funded byABC4 UICC & Pfizer Conference Findings: Patient Needs (N=67) Rated as important or very important Physical and daily living needs • Relieving pain 85.1% • Advice on the kind of food to eat and remain healthy 83.6% • Advice on management of wounds while at home 80.6% • Help when there is lack of energy or tiredness of the patient 74.6% • Help where there is inability to do the things the patient wants to 73.1% do • Help with work around home 68.7% • Advice on how to cope with feeling unwell most of the time 67.2% • AdviceABC4 on available financial Conference assistance 65.7% Findings: Patient Needs (N=67) Rated as important/very important -(top 11 Health system, information & patient support Treating the patient like a person who is still useful 86.6% Treating patients in an environment that is as pleasant as possible 83.6% Attending promptly to patients basic needs e.g. food, water etc 80.6% Showing sensitivity to patients feelings and emotions 80.6% Access to counseling and Information on cancer treatment side 79.1% effects Providing patients with more choices of cancer specialists 77.6% Information on cancer treatment plan 76.1% AccommodatingABC4 patients’ opinions Conference on care and treatment 74.6% Patient Needs (N=67) Psychological Needs Allaying worries and concerns of those close to the 79.1% patient Advising the patient to have faith 77.6% Comforting the patient when feeling sad, down or 74.6% depressed Advice on how to keep a positive outlook 73.1% Advise on how to disclose 71.6% Allaying worry about the success of treatment being 67.2% beyond anybody’s control Allaying fears about cancer spreading 64.2% Allaying anxiety generally and uncertainty about the 64.2% future AllayingABC4 fears about dying andConference ultimate death 61.2% Assessing Patient Needs; Patient and Family Voices Count Patients Survivors Family Clinical VHT caregivers staff Having one member of staff with 62.7% 62.7% 62.7% 58.3% 41.7% whom the patient can talk to about their concerns Information whether the cancer is 68.7% 68.6% 68.7% 50.0% 33.3% under control Information whether the treatment is 77.6% 73.4% 78.4% 66.7% 33.3% working or not Giving written Information to patients 52.2% 64.1% 53.0% 37.5% 0.0% Providing patients with more choices 77.6% 60.5% 60.4% 41.7% 8.3% of cancer specialists Accommodating the patient’s 74.6% 64.3% 58.2% 33.3% 25.0% opinions on care and treatment Access toABC4 spiritual leaders Conference70.1% 78.9% 72.4% 66.7% 50.0% UWOCASO’S EFFORTS TO SUPPORT MBC PATIENTS FACING THE STORM ABC4 Conference CASE STUDY: MBCP004 36years Mother of 3 all under 10years, stays in a rented house, husband run away after the first line chemotherapy. She has metastases in the liver and bones, has a septic wound in the mastectomy scar and pain. Jane(not real name) had withdrawn and had not involved her own family living 300km out of Kampala, she had lost her job during the first treatment. UWOCASO; Pyscho-social support, had family meeting, Involved a senior oncologist admitted Jane for second line chemotherapy to shrink the tumor- no response, involved plastic surgeons at CORSU for palliative surgery and hospice for pain management. Outcome: Patient is emotionally stable, and her pain is well controlled and she believes in cure. Her family is supportive still persuading the husband to support the children when she is goneABC4 Conference UWOCASO’S EFFORTS CONTD… ABC4 Conference CONCLUSION • In order to support patients with advanced disease through their storm there must be a multi-disciplinary team including psychologists, social workers, physicians etc • The goal of treatment must also be communicated to the patient. ABC4 Conference ACKNOWLEGEMENTS • UICC and Pfizer for the financial support • Uganda Cancer Institute • WECAN • Ministry of Health Uganda • Nsambya, Mengo and Lubaga Hospitals • Hospice Africa Uganda • Breast cancer survivors and Advocates from East Africa • Uganda Cancer Society • Africa Palliative Care Association • Palliative Care Association of Uganda • VHTS • ESO ABC4 Conference THANK YOU ABC4 Conference.

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