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1.
J Clin Oncol ; : JCO2400542, 2024 May 15.
Article in English | MEDLINE | ID: mdl-38748941

ABSTRACT

PURPOSE: To provide evidence-based guidance to oncology clinicians, patients, nonprofessional caregivers, and palliative care clinicians to update the 2016 ASCO guideline on the integration of palliative care into standard oncology for all patients diagnosed with cancer. METHODS: ASCO convened an Expert Panel of medical, radiation, hematology-oncology, oncology nursing, palliative care, social work, ethics, advocacy, and psycho-oncology experts. The Panel conducted a literature search, including systematic reviews, meta-analyses, and randomized controlled trials published from 2015-2023. Outcomes of interest included quality of life (QOL), patient satisfaction, physical and psychological symptoms, survival, and caregiver burden. Expert Panel members used available evidence and informal consensus to develop evidence-based guideline recommendations. RESULTS: The literature search identified 52 relevant studies to inform the evidence base for this guideline. RECOMMENDATIONS: Evidence-based recommendations address the integration of palliative care in oncology. Oncology clinicians should refer patients with advanced solid tumors and hematologic malignancies to specialized interdisciplinary palliative care teams that provide outpatient and inpatient care beginning early in the course of the disease, alongside active treatment of their cancer. For patients with cancer with unaddressed physical, psychosocial, or spiritual distress, cancer care programs should provide dedicated specialist palliative care services complementing existing or emerging supportive care interventions. Oncology clinicians from across the interdisciplinary cancer care team may refer the caregivers (eg, family, chosen family, and friends) of patients with cancer to palliative care teams for additional support. The Expert Panel suggests early palliative care involvement, especially for patients with uncontrolled symptoms and QOL concerns. Clinicians caring for patients with solid tumors on phase I cancer trials may also refer them to specialist palliative care.Additional information is available at www.asco.org/supportive-care-guidelines.

2.
BMC Palliat Care ; 23(1): 17, 2024 Jan 16.
Article in English | MEDLINE | ID: mdl-38229044

ABSTRACT

BACKGROUND: Fewer than 1 in 20 people on the African continent in need of palliative care receive it. Malawi is a low-income country in sub-Saharan Africa that has yet to achieve advanced palliative care integration accompanied by unrestricted access to pain and symptom relieving palliative medicines. This paper studied the impact of Malawi's Waterloo Coalition Initiative (WCI) - a local project promoting palliative care integration through service development, staff training, and increased service access. METHODS: Interdisciplinary health professionals at 13 hospitals in southern Malawi were provided robust palliative care training over a 10-month period. We used a cross-sectional evaluation to measure palliative care integration based on 11 consensus-based indicators over a one-year period. RESULTS: 92% of hospitals made significant progress in all 11 indicators. Specifically, there was a 69% increase in the number of dedicated palliative care rooms/clinics, a total of 253 staff trained across all hospitals (a 220% increase in the region), substantive increases in the number of patients receiving or assessed for palliative care, and the number of hospitals that maintained access to morphine or other opioid analgesics while increasing the proportion of referrals to hospice or other palliative care programs. CONCLUSION: Palliative care is a component of universal health coverage and Sustainable Development Goal 3. The WCI has made tremendous strides in establishing and integrating palliative care services in Malawi with notable progress across 11 project indicators, demonstrating that increased palliative care access is possible in severely resource-constrained settings through sustained models of partnership at the local level.


Subject(s)
Hospice Care , Palliative Care , Humans , Malawi , Cross-Sectional Studies , Pain
3.
J Cancer Educ ; 38(4): 1367-1372, 2023 08.
Article in English | MEDLINE | ID: mdl-36808563

ABSTRACT

Breast and cervical cancer incidence rates and mortality rates in Kenya are high. Screening is globally accepted as a strategy for early detection and downstaging of these cancers for better outcomes, but despite the efforts established by the Kenyan government to provide these services to eligible populations, uptake has remained disproportionately low. Using data from a larger study aimed at understanding the implementation and scale-up of cervical cancer screening services, we analyzed data to compare the preferences for breast and cervical cancer screening services between men and women (25-49 years) in rural and urban communities in Kenya. Participants were recruited in concentric circles starting at the center of six subcounties. One woman and one man per household were enrolled for data collection on a continuous basis. More than 90% of both men and women had a monthly income of less than US $500. The top three preferred sources of information on screening for cancers affecting women were health care providers; community health volunteers; and media such as television, radio, newspapers, and magazines. More women (43.6%) than men (28.0%) trusted community health volunteers to provide health information on cancer screening. Printed materials and mobile phone messages were preferred by approximately 30% of both genders. Over 75% of both men and women preferred an integrated model of service delivery. These findings show that there are many similarities that can be leveraged when designing implementation strategies for population-wide breast and cervical cancer screening hence reducing the challenge of addressing diverse preferences of men and women which may not be easy to reconcile.


Subject(s)
Uterine Cervical Neoplasms , Female , Humans , Male , Uterine Cervical Neoplasms/diagnosis , Uterine Cervical Neoplasms/prevention & control , Uterine Cervical Neoplasms/epidemiology , Early Detection of Cancer , Kenya , Income , Rural Population , Mass Screening
4.
J Cancer Surviv ; 17(3): 634-645, 2023 06.
Article in English | MEDLINE | ID: mdl-36656300

ABSTRACT

PURPOSE: In 2017, the World Health Organization urged member states to develop and implement national cancer control plans (NCCPs) and to anticipate and promote cancer survivor follow-up care, which is a critical yet often overlooked component of NCCPs. This study aims to examine the inclusion of cancer survivorship-related strategies and objectives in NCCPs of African countries. METHODS: Independent reviewers extracted strategies, objectives, and associated indicators related to survivorship care from 21 current or recently expired NCCPs in African countries. Building on a similar analysis of the US state cancer control plans, reviewers categorized these strategies according to an adapted version of the ten recommendations for comprehensive survivorship care detailed in the 2006 National Academy of Medicine report. RESULTS: A total of 202 survivorship-related strategies were identified, with all NCCPs including between 1 and 23 references to survivorship. Eighty-three (41%) strategies were linked to measurable indicators, and 128 (63%) of the survivorship-related strategies were explicitly focused on palliative care. The most frequent domains referenced were models of coordinated care (65 strategies), healthcare professional capacity (45), and developing and utilizing evidence-based guidelines (23). The least-referenced domains were survivorship care plans (4) and adequate and affordable health insurance (0). CONCLUSIONS: The results of this study indicate that survivorship objectives and strategies should extend beyond palliative care to encompass all aspects of survivorship and should include indicators to measure progress. IMPLICATIONS FOR CANCER SURVIVORS: Stakeholders can use this baseline analysis to identify and address gaps in survivorship care at the national policy level.


Subject(s)
Cancer Survivors , Neoplasms , Humans , Survivorship , Neoplasms/therapy , Delivery of Health Care , Africa
5.
Palliat Med ; 36(7): 1140-1153, 2022 07.
Article in English | MEDLINE | ID: mdl-35656638

ABSTRACT

BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. AIM: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. DESIGN: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. RESULTS: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. CONCLUSION: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Adolescent , Child , Feasibility Studies , Humans , Outcome Assessment, Health Care , Palliative Care/psychology , Surveys and Questionnaires , Uganda
6.
Lancet Oncol ; 23(6): e251-e312, 2022 06.
Article in English | MEDLINE | ID: mdl-35550267

ABSTRACT

In sub-Saharan Africa (SSA), urgent action is needed to curb a growing crisis in cancer incidence and mortality. Without rapid interventions, data estimates show a major increase in cancer mortality from 520 348 in 2020 to about 1 million deaths per year by 2030. Here, we detail the state of cancer in SSA, recommend key actions on the basis of analysis, and highlight case studies and successful models that can be emulated, adapted, or improved across the region to reduce the growing cancer crises. Recommended actions begin with the need to develop or update national cancer control plans in each country. Plans must include childhood cancer plans, managing comorbidities such as HIV and malnutrition, a reliable and predictable supply of medication, and the provision of psychosocial, supportive, and palliative care. Plans should also engage traditional, complementary, and alternative medical practices employed by more than 80% of SSA populations and pathways to reduce missed diagnoses and late referrals. More substantial investment is needed in developing cancer registries and cancer diagnostics for core cancer tests. We show that investments in, and increased adoption of, some approaches used during the COVID-19 pandemic, such as hypofractionated radiotherapy and telehealth, can substantially increase access to cancer care in Africa, accelerate cancer prevention and control efforts, increase survival, and save billions of US dollars over the next decade. The involvement of African First Ladies in cancer prevention efforts represents one practical approach that should be amplified across SSA. Moreover, investments in workforce training are crucial to prevent millions of avoidable deaths by 2030. We present a framework that can be used to strategically plan cancer research enhancement in SSA, with investments in research that can produce a return on investment and help drive policy and effective collaborations. Expansion of universal health coverage to incorporate cancer into essential benefits packages is also vital. Implementation of the recommended actions in this Commission will be crucial for reducing the growing cancer crises in SSA and achieving political commitments to the UN Sustainable Development Goals to reduce premature mortality from non-communicable diseases by a third by 2030.


Subject(s)
COVID-19 , Neoplasms , Noncommunicable Diseases , Africa South of the Sahara/epidemiology , COVID-19/epidemiology , COVID-19/prevention & control , Child , Delivery of Health Care , Humans , Neoplasms/epidemiology , Neoplasms/therapy , Pandemics
7.
J Pain Symptom Manage ; 63(5): 729-736, 2022 05.
Article in English | MEDLINE | ID: mdl-34973351

ABSTRACT

CONTEXT: This article provides a progress update on the development of palliative care in five countries in Africa-Kenya, Rwanda, South Africa, Tanzania, and Uganda-between 2017 and 2021, and explores the role of palliative care advocates and the Open Society Foundations in this process. OBJECTIVES: To provide a progress update on the development of palliative care in Kenya, Rwanda, South Africa, Tanzania, and Uganda between 2017 and 2021 and to examine the impact of twenty years of Open Society Foundations support for palliative care in the region on the integration of palliative care into publicly funded health systems. METHODS: In the mid-2000s, palliative care pioneers in these five countries, supported by Open Society Foundations, began to train health care providers and engage policy makers to ensure that people with life-limiting illnesses and their families had access to appropriate services and essential medicines. In the late 2010s, it embraced an approach that mixed strategic communications and advocacy for inclusion of palliative care into universal health coverage with technical assistance. RESULTS: By the mid-2010s, a vibrant palliative care community existed that worked closely with governments to develop palliative care policies, train providers, and ensure access to morphine. By 2021, Kenya and Rwanda had made significant progress scaling up palliative care services as part of the public health care system, and Uganda's government had instructed public hospitals to start providing these services. In South Africa and Tanzania, governments had yet to commit to publicly funded palliative care services. CONCLUSION: The experiences in these countries suggest that mixing advocacy, communications, and technical assistance can lead to substantial progress for patient access although full inclusion in universal health coverage remained uncertain in all but Rwanda.


Subject(s)
Hospice and Palliative Care Nursing , Palliative Care , Delivery of Health Care , Health Personnel/education , Humans , Kenya
8.
Article in English | MEDLINE | ID: mdl-34831995

ABSTRACT

Sub-Saharan Africa has been identified as one of the most vulnerable regions to climate change. The objective of this study was to explore knowledge and perspectives on climate change and health-related issues, with a particular focus on non-communicable diseases, in the informal settlement (urban slum) of Mukuru in Nairobi, Kenya. Three focus group discussions and five in-depth interviews were conducted with total of 28 participants representing local community leaders, health care workers, volunteers, policy makers and academia. Data were collected using semi-structured interview guides and analyzed using grounded theory. Seven main themes emerged: climate change related diseases, nutrition and access to clean water, environmental risk factors, urban planning and public infrastructure, economic risk factors, vulnerable groups, and adaptation strategies. All participants were conscious of a link between climate change and health. This is the first qualitative study on climate change and health in an informal settlement in Africa. The study provides important information on perceived health risks, risk factors and adaptation strategies related to climate change. This can inform policy making, urban planning and health care, and guide future research. One important strategy to adapt to climate change-associated health risks is to provide training of local communities, thus ensuring adaptation strategies and climate change advocacy.


Subject(s)
Climate Change , Volunteers , Administrative Personnel , Health Personnel , Humans , Kenya
9.
Ecancermedicalscience ; 15: 1202, 2021.
Article in English | MEDLINE | ID: mdl-33889211

ABSTRACT

INTRODUCTION: Public health emergencies and crises such as the current COVID-19 pandemic can accelerate innovation and place renewed focus on the value of health interventions. Capturing important lessons learnt, both positive and negative, is vital. We aimed to document the perceived positive changes (silver linings) in cancer care that emerged during the COVID-19 pandemic and identify challenges that may limit their long-term adoption. METHODS: This study employed a qualitative design. Semi-structured interviews (n = 20) were conducted with key opinion leaders from 14 countries. The participants were predominantly members of the International COVID-19 and Cancer Taskforce, who convened in March 2020 to address delivery of cancer care in the context of the pandemic. The Framework Method was employed to analyse the positive changes of the pandemic with corresponding challenges to their maintenance post-pandemic. RESULTS: Ten themes of positive changes were identified which included: value in cancer care, digital communication, convenience, inclusivity and cooperation, decentralisation of cancer care, acceleration of policy change, human interactions, hygiene practices, health awareness and promotion and systems improvement. Impediments to the scale-up of these positive changes included resource disparities and variation in legal frameworks across regions. Barriers were largely attributed to behaviours and attitudes of stakeholders. CONCLUSION: The COVID-19 pandemic has led to important value-based innovations and changes for better cancer care across different health systems. The challenges to maintaining/implementing these changes vary by setting. Efforts are needed to implement improved elements of care that evolved during the pandemic.

10.
Ann Glob Health ; 87(1): 3, 2021 01 05.
Article in English | MEDLINE | ID: mdl-33505862

ABSTRACT

Background: Kenya has implemented a robust response to non-communicable diseases and injuries (NCDIs); however, key gaps in health services for NCDIs still exist in the attainment of Universal Health Coverage (UHC). The Kenya Non-Communicable Diseases and Injury (NCDI) Poverty Commission was established to estimate the burden of NCDIs, determine the availability and coverage of health services, prioritize an expanded set of NCDI conditions, and propose cost-effective and equity-promoting interventions to avert the health and economic consequences of NCDIs in Kenya. Methods: Burden of NCDIs in Kenya was determined using desk review of published literature, estimates from the Global Burden of Disease Study, and secondary analysis of local health surveillance data. Secondary analysis of nationally representative surveys was conducted to estimate current availability and coverage of services by socioeconomic status. The Commission then conducted a structured priority setting process to determine priority NCDI conditions and health sector interventions based on published evidence. Findings: There is a large and diverse burden of NCDIs in Kenya, with the majority of disability-adjusted life-years occurring before age of 40. The poorest wealth quintiles experience a substantially higher deaths rate from NCDIs, lower coverage of diagnosis and treatment for NCDIs, and lower availability of NCDI-related health services. The Commission prioritized 14 NCDIs and selected 34 accompanying interventions for recommendation to achieve UHC. These interventions were estimated to cost $11.76 USD per capita annually, which represents 15% of current total health expenditure. This investment could potentially avert 9,322 premature deaths per year by 2030. Conclusions and Recommendations: An expanded set of priority NCDI conditions and health sector interventions are required in Kenya to achieve UHC, particularly for disadvantaged socioeconomic groups. We provided recommendations for integration of services within existing health services platforms and financing mechanisms and coordination of whole-of-government approaches for the prevention and treatment of NCDIs.


Subject(s)
Delivery of Health Care/organization & administration , Noncommunicable Diseases/therapy , Universal Health Insurance , Wounds and Injuries/therapy , Global Health , Health Expenditures , Health Status Indicators , Humans , Kenya/epidemiology , Poverty
11.
J Pain Symptom Manage ; 60(4): 754-764, 2020 10.
Article in English | MEDLINE | ID: mdl-32387576

ABSTRACT

CONTEXT: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. OBJECTIVE: The main objective of this article is to present the research behind the new definition. METHODS: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. RESULTS: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. CONCLUSION: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span.


Subject(s)
Hospice Care , Hospice and Palliative Care Nursing , Consensus , Humans , Palliative Care , Quality of Life
12.
Cancer ; 126 Suppl 10: 2365-2378, 2020 05 15.
Article in English | MEDLINE | ID: mdl-32348571

ABSTRACT

Optimal treatment outcomes for breast cancer are dependent on a timely diagnosis followed by an organized, multidisciplinary approach to care. However, in many low- and middle-income countries, effective care management pathways can be difficult to follow because of financial constraints, a lack of resources, an insufficiently trained workforce, and/or poor infrastructure. On the basis of prior work by the Breast Health Global Initiative, this article proposes a phased implementation strategy for developing sustainable approaches to enhancing patient care in limited-resource settings by creating roadmaps that are individualized and adapted to the baseline environment. This strategy proposes that, after a situational analysis, implementation phases begin with bolstering palliative care capacity, especially in settings where a late-stage diagnosis is common. This is followed by strengthening the patient pathway, with consideration given to a dynamic balance between centralization of services into centers of excellence to achieve better quality and decentralization of services to increase patient access. The use of resource checklists ensures that comprehensive therapy or palliative care can be delivered safely and effectively. Episodic or continuous monitoring with established process and quality metrics facilitates ongoing assessment, which should drive continual process improvements. A series of case studies provides a snapshot of country experiences with enhancing patient care, including the implementation of national cancer control plans in Kenya, palliative care in Romania, the introduction of a 1-stop clinic for diagnosis in Brazil, the surgical management of breast cancer in India, and the establishment of a women's cancer center in Ghana.


Subject(s)
Breast Neoplasms/diagnosis , Breast Neoplasms/therapy , Brazil , Checklist , Combined Modality Therapy , Delayed Diagnosis , Developed Countries , Female , Health Plan Implementation , Humans , Interdisciplinary Communication , Kenya , Romania , Time-to-Treatment
13.
Palliat Med ; 34(3): 319-335, 2020 03.
Article in English | MEDLINE | ID: mdl-32081084

ABSTRACT

BACKGROUND: Paediatric life-limiting and life-threatening conditions (life-limiting conditions) place significant strain on children, families and health systems. Given high service use among this population, it is essential that care addresses their main symptoms and concerns. AIM: This study aimed to identify the symptoms, concerns and other outcomes that matter to children with life-limiting conditions and their families in sub-Saharan Africa. SETTING AND PARTICIPANTS: Cross-sectional qualitative study in Kenya, Namibia, South Africa and Uganda. Children/caregivers of children aged 0-17 years with life-limiting conditions were purposively sampled by age, sex and diagnosis. Children aged 7 and above self-reported; caregiver proxies reported for children below 7 and those aged 7 and above unable to self-report. RESULTS: A total of 120 interviews were conducted with children with life-limiting conditions (n = 61; age range: 7-17 years), and where self-report was not possible, caregivers (n = 59) of children (age range: 0-17) were included. Conditions included advanced HIV (22%), cancer (19%), heart disease (16%) endocrine, blood and immune disorders (13%), neurological conditions (12%), sickle cell anaemia (10%) and renal disease (8%). Outcomes identified included physical concerns - pain and symptom distress; psycho-social concerns - family and social relationships, ability to engage with age-appropriate activities (e.g. play, school attendance); existential concerns - worry about death, and loss of ambitions; health care quality - child- and adolescent-friendly services. Priority psycho-social concerns and health service factors varied by age. CONCLUSION: This study bridges an important knowledge gap regarding symptoms, concerns and outcomes that matter to children living with life-limiting conditions and their families and informs service development and evaluation.


Subject(s)
Patient-Centered Care , Quality of Health Care , Terminal Care , Adolescent , Africa South of the Sahara , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Infant , Infant, Newborn , Interviews as Topic , Male , Qualitative Research , Self Report , Symptom Assessment
14.
Am J Hosp Palliat Care ; 37(10): 779-784, 2020 Oct.
Article in English | MEDLINE | ID: mdl-31975611

ABSTRACT

Spirituality and religion are at the core of Kenyan life. Pastoral leaders play a key role in shaping the individual and community's response to living with chronic and life-threatening illnesses. Involvement of religious leaders would therefore be critical in advocacy and education efforts in palliative care (PC) to address the needs of this population. The goal of this study was to evaluate the knowledge and perceptions of religious leaders in Western Kenya regarding PC. This was a mixed-methods study with 86 religious leaders utilizing a 25-question survey followed by 5-person focus group discussions. Eighty-one percent of participants agreed that pastors should encourage members with life-threatening illnesses to talk about death and dying. However, almost a third of participants (29%) also agreed with the statement that full use of PC can hasten death. The pastors underscored challenges in end-of-life spiritual preparation as well as the importance of traditional beliefs in shaping cultural norms. Pastors supported the need for community-based PC education and additional training in PC for religious leaders. The results of this study confirm the dominant role of religion and spirituality in PC in Kenya. This dominant role in shaping PC is tied closely to Kenyan attitudes and norms surrounding death and dying.


Subject(s)
Palliative Care , Religion , Focus Groups , Humans , Kenya , Perception , Spirituality
15.
Oncologist ; 24(12): 1549-1556, 2019 12.
Article in English | MEDLINE | ID: mdl-31601730

ABSTRACT

BACKGROUND: Early detection and prompt access to quality treatment and palliative care are critical for good breast cancer outcomes. Interventions require understanding of identified barriers and facilitators to care. A hermeneutic phenomenological approach, whose purpose is to describe feelings and lived experiences of participants, can expand the existing scope of understanding of barriers and facilitators in accessing breast cancer care in Kenya. METHODS: This is qualitative research applying focus groups and a hermeneutic phenomenological approach to identify barriers and facilitators to breast cancer care from the knowledge, perceptions, and lived experiences of women with and without a diagnosis of breast cancer in Kenya. We conducted four focus group discussions with 6-11 women aged 30-60 years in each. Groups were classified according to breast cancer diagnosis and socioeconomic status. The transcribed discussions were coded independently by two investigators. Together they reviewed the codes and identified themes. RESULTS: The key barriers were costs, inadequate knowledge, distance to health facilities, communication with health providers, medicines stockouts, long waiting periods, limited or no counseling at diagnosis, patient vulnerability, and limited access to rehabilitation items. Facilitators were dependable social support, periodical access to subsidized awareness, and early detection services and friendly caregivers. We found no marked differences in perceptions between groups by socioeconomic status. CONCLUSION: There is need for targeted awareness and education for health providers and the public, early detection services with onsite counseling and cost mitigation. Support from the society and religious organizations and persons may be leveraged as adjuncts to conventional management. Further interpretations are encouraged. IMPLICATIONS FOR PRACTICE: Continuing cancer education for health providers in technical skills for early detection, treatment, and survivorship care, as well as nontechnical skills like communication, and an understanding of their patients' preferences and socioeconomic status may guide individualized management plans and positively affect patient experiences. Patients and the general public also need education on cancer to avoid misconceptions and inaccuracies that perpetuate fear, confusion, delayed presentation for treatment, and stigma. Critical analysis of the cancer care value chain and processes, development, and implementation of interventions to reduce costs while streamlining processes may improve client experiences.


Subject(s)
Breast Neoplasms/diagnosis , Early Detection of Cancer/methods , Breast Neoplasms/epidemiology , Female , Focus Groups , Humans , Kenya , Qualitative Research
16.
J Glob Oncol ; 5: 1-10, 2019 03.
Article in English | MEDLINE | ID: mdl-30908145

ABSTRACT

PURPOSE: By 2025, Kenya is estimated to experience a two-thirds increase in the incidence of breast cancer. Local research is necessary to generate evidence to inform policy, public health, and medical practice. There have been no longitudinal cohort studies in sub-Saharan Africa of women with and without breast cancer. Our aim is to assess the feasibility of conducting cohort studies in Kenya that consider clinical characteristics, socioeconomic factors, and self-care behaviors. METHODS: We initiated a short-term follow-up cohort study of women with and without a diagnosis of breast cancer with baseline face-to-face data collection and one follow-up interview (at approximately 3 months by telephone). We developed tailored instruments to capture demographics, socioeconomic factors, breast cancer risk, ability to identify breast cancer symptoms, treatments received for breast cancer, and quality of life of survivors. RESULTS: We recruited 800 women between the ages of 20 and 60 years and successfully collected baseline data. Completeness of the data was high for demographic variables, but there was a larger proportion of missing information for specific variables required for assessing breast cancer risk. Respondents were able to complete standardized instruments to assess breast cancer knowledge among those without breast cancer and identification of symptoms among survivors. We were able to successfully contact approximately 80% of the participants for follow-up. CONCLUSION: This short-term follow-up study provides evidence that women can be successfully tracked and contacted for follow-up in the Kenyan setting and offers lessons to establish future longitudinal cohorts to identify approaches to improve breast cancer outcomes.


Subject(s)
Breast Neoplasms/epidemiology , Adult , Africa , Cohort Studies , Female , Humans , Kenya , Middle Aged , Young Adult
17.
BMJ Open ; 9(1): e023171, 2019 01 28.
Article in English | MEDLINE | ID: mdl-30782697

ABSTRACT

INTRODUCTION: A catastrophic 35% increase in the burden of breast cancer in Kenya has been predicted by 2025. Mitigating this burden is critical, and local research is necessary to generate the evidence to inform policy, public health and medical practice. Most of the knowledge available has been derived from studies in high-income countries that are not directly applicable due to economic, social, cultural and ethnic differences. At the time of writing this paper, we had no knowledge of any longitudinal cohort studies in sub-Saharan Africa of both breast cancer survivors and a matching cohort of women who have never had a diagnosis of cancer. We aim to assess feasibility of cohort studies in Kenya that consider clinical characteristics social determinants and individual health seeking behaviour. METHODS AND ANALYSIS: This study aims to inform best practices for initiating a longitudinal cohort study in Kenya. It is a two-pronged, prospective mixed methods study of women with and without a diagnosis of breast cancer with baseline data collection and one follow-up data collection approximately 3 months later by telephone. Quantitative and qualitative data will be collected concurrently, analysed separately and together to enrich understanding of concepts by triangulation. We aim to include 800 women aged 30-60 years: 400 in the survivorship cohort and 400 in the non-cancer cohort. Two focus group discussions from each cohort will be carried out to enhance understanding of concepts and to guide recommendations. ETHICS AND DISSEMINATION: Independent ethical approval was obtained from Kenyatta National Hospital-University of Nairobi Ethics and Research Committee and the Research Triangle Institute International. Only consenting participants will be enrolled. Counselling support, debriefing discussions and referrals for formal support services will be available for both participants and research assistants. Findings will be disseminated through publications, websites and presentations.


Subject(s)
Breast Neoplasms/diagnosis , Cancer Survivors/psychology , Health Behavior , Social Determinants of Health , Adult , Feasibility Studies , Female , Focus Groups , Humans , Kenya , Longitudinal Studies , Middle Aged , Prospective Studies , Research Design , Socioeconomic Factors
18.
J Glob Oncol ; 4: 1-24, 2018 07.
Article in English | MEDLINE | ID: mdl-30085844

ABSTRACT

Purpose The purpose of this new resource-stratified guideline is to provide expert guidance to clinicians and policymakers on implementing palliative care of patients with cancer and their caregivers in resource-constrained settings and is intended to complement the Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology Clinical Practice Guideline Update of 2016. Methods ASCO convened a multidisciplinary, multinational panel of experts in medical oncology, family medicine, radiation oncology, hematology/oncology, palliative and/or hospice care, pain and/or symptom management, patient advocacy, public health, and health economics. Guideline development involved a systematic literature review, a modified ADAPTE process, and a formal consensus-based process with the Expert Panel and additional experts (consensus ratings group). Results The systematic review included 48 full-text publications regarding palliative care in resource-constrained settings, along with cost-effectiveness analyses; the evidence for many clinical questions was limited. These provided indirect evidence to inform the formal consensus process, which resulted in agreement of ≥ 75% (by consensus ratings group including Expert Panel). Recommendations The recommendations help define the models of care, staffing requirements, and roles and training needs of team members in a variety of resource settings for palliative care. Recommendations also outline the standards for provision of psychosocial support, spiritual care, and opioid analgesics, which can be particularly challenging and often overlooked in resource-constrained settings. Additional information is available at www.asco.org/resource-stratified-guidelines . It is the view of ASCO that health care providers and health care system decision makers should be guided by the recommendations for the highest stratum of resources available. The guideline is intended to complement but not replace local guidelines.


Subject(s)
Medical Oncology/methods , Medical Oncology/standards , Palliative Care/methods , Palliative Care/standards , Humans
19.
AIDS Care ; 30(sup2): 28-32, 2018 06.
Article in English | MEDLINE | ID: mdl-29848006

ABSTRACT

Tuberculosis illness is associated with uncertain outcomes, and has high prevalence among people living with HIV. The new World Health Organization's End TB strategy specifies person-centred symptom management and psychosocial support alongside treatment within its pillars and components. There is a paucity of research to inform an effective care response in Kenya in terms of self-reported outcomes. We aimed to measure the three day period intensity of problems and concerns (physical, psychological, social and spiritual), and identify predictors of problems and concerns, among HIV patients attending outpatient care. We conducted a cross-sectional self-report quantitative study among adult (aged at least 18 years) patients with confirmed HIV diagnosis, and aware of their diagnosis and attending HIV outpatient care in Kenya. Multi-dimensional palliative care problems and concerns were collected using African Palliative Outcome Scale (APOS). Ordinal logistic regression assessed the association of multi-dimensional problems and concerns controlling for demographic variables (age, gender, education and wealth) and clinical variables (WHO clinical stage, HIV treatment status, TB treatment status, and CD4 count). We recruited N = 400 participants. N = 61 (15.64%) were on TB treatment. The items with worst score responses were help and advice to plan for the future (52.5%), ability to share feelings (46.25%), at peace (30.75%) pain (27%) and life worthwhile (18.75%). TB treatment status was associated with lower (worse) score for APOS total score (odds ratio .59, 95% CI .36 to .99; P = 0.046) and factor 3(existential and spiritual wellbeing: .55, .32 to .92; p = 0.023). Interestingly higher CD4 count was predictive of lower (worse) factor 3 outcomes (existential and spiritual wellbeing: .84, 95% CI 73 to .97; p = 0.014). This study informs the new WHO End TB policy with novel data on specific clinical needs. This calls for holistic symptom assessment, person-centred care and holistic management to respond positively to the End TB strategy.


Subject(s)
Anti-HIV Agents/therapeutic use , Antitubercular Agents/therapeutic use , HIV Infections/drug therapy , Outpatients/statistics & numerical data , Palliative Care/methods , Tuberculosis/drug therapy , Activities of Daily Living , Adolescent , Adult , CD4 Lymphocyte Count , Cross-Sectional Studies , Female , HIV Infections/epidemiology , HIV Infections/psychology , Humans , Kenya/epidemiology , Male , Middle Aged , Outpatients/psychology , Pain/psychology , Prevalence , Self Report , Tuberculosis/epidemiology , Tuberculosis/psychology
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