Supporting Kenyan women with advanced breast cancer through a network and assessing their needs and quality of life

Abstract

Introduction Metastatic breast cancer (MBC) patients have several unmet needs. The needs and quality of life of MBC women living in sub-Saharan Africa (SSA) are understudied. Facilitating the interaction of various caregivers is beneficial in addressing the needs. Internet-based resources play an important role in reaching out to these patients. We aimed to bring the various stakeholders into a joint network force, create a web-based portal, understand the needs of MBC patients, and assess the utilization of web-based resources for women from Kenya. Methods A network of various stakeholders considered crucial in the care of Kenyan women with MBC was created. We conducted educational camps and assessed their needs, quality of life (QoL), and knowledge. We assessed the impact of utilizing web-based resources by MBC patients from here. Results We formed a network involving partners and launched the first dedicated website for MBC from Kenya. The website has received 13,944 visits and 310,379 hits in 2 years. One hundred fourteen women living with MBC were interviewed, and our findings show that psychological needs (63%), physical support needs (60%), and health care system needs (55%) are leading areas of needs that increase with rural residence ( p = 0.001), less education ( p = 0.003), and aggressive treatments ( p = 0.008). Quality of life (QoL) confirmed better scores with urban residence ( p = 0.002), internet access ( p = 0.010), and stable disease ( p = 0.042). Conclusions Creating a network of caregivers provides opportunities for cohesive efforts in understanding the psychosocial and medical needs of patients with MBC. Internet-based resources are an effective way of reaching out to them. Kenyan patients show extremely good uptake of internet-based resources. Supplementary Information The online version contains supplementary material available at 10.1007/s00520-021-06539-5.

Symptoms, concerns, and experiences of women living with and beyond breast cancer in Africa: A mixed‐methods systematic review

“…Quantitative studies were largely conducted in tertiary, teaching or government hospitals or a combination 28–51 . The aim of studies varied from those determining: (i) the quality of life of breast cancer patients 40,41,43,45 (typically explored using the Functional Assessment of Cancer Therapy‐Breast, 41,50 European Organisation for Research and Treatment of Cancer for cancer and breast cancer patients respectively (EORTC QLQ‐C30 and EORTC QLQ‐BR23), 37,38,43,44 the Brief‐COPE, 32,50 and the Mini‐Mental Adjustment to Cancer Scale, 35 see (Suppplementary File 7: Table 3), (ii) coping strategies of women with breast cancer, 32,46,50 (iii) psychological, psychosocial concerns, information needs, unmet needs, and fears, 31,33–36,39,42,47–49 and (iv) women's experiences with the health systems 28–30,51 . Findings from studies are presented below, aligned with the ARC framework (see Supplementary File 5).…”

“…Zambia (n = 1) (qualitative studies (n = 1) 52 ); Kenya (n = 1) (quantitative studies (n = 1) 49 )) and North Africa (Sudan (n = 2) (quantitative studies (n = 2) 38,45 ); Morocco (n = 1) (quantitative studies (n = 1) 43 )). The mean age of participants reported across studies ranged from 39.9 to 58.5 years, with participant ages ranging from 21 to 99 years.…”

“…41 For participants accessing healthcare, instances of health workers lacking empathy were reported, indicating adequate emotional support was not received, alongside a lack of information about their treatment (pre and post). 31,35,39,43,[45][46][47]49 Commonly reported needs of participants across studies included those relating to information (e.g., diagnostic, treatment and management information, physical care information, psychosocial information, and disease-specific and prognosis information), 35,39,[47][48][49] sexuality, 35,39 psychological health 49 and religion. 35,39 Many studies showed that most of the women had financial issues and were unable to pay for treatment, transport, and other costs associated with their cancer.…”

Psychosocial aspects of adult cancer patients: A scoping review of sub‐Saharan Africa

“…A total of 44 studies were identified in this category across SSA. The majority of studies reported that the burden of unmet psychosocial needs was between 20% and 90.4% among adult cancer patients 24–27 . Psychosocial issues commonly reported in most of the studies were related to physical strength, 28 emotional distress, 29–31 anxiety and depression, 29,32–38 sub‐optimal pain control, 39 body image/body issues (abnormal body sensations, feelings of unattractiveness, poor self‐esteem), 28,40–46 health information need, 47–49 support system lack, 45,50 relationship disruptions (e.g., rejection of sexual activities from their spouse, changes in the work role etc.…”

“…The majority of studies reported that the burden of unmet psychosocial needs was between 20% and 90.4% among adult cancer patients. [24][25][26][27] Psychosocial issues commonly reported in most of the studies were related to physical strength, 28 emotional distress, [29][30][31] anxiety and depression, 29,[32][33][34][35][36][37][38] sub-optimal pain control, 39 -91…”