Health-related quality of life, palliative care needs and 12-month survival among patients with end stage renal disease in Uganda: protocol for a mixed methods longitudinal study.

BACKGROUND: The prevalence of chronic kidney disease is on the rise globally and in sub-Saharan Africa. Due to its "silent" nature, many patients often present with advanced disease. At this point options for care are often limited to renal replacement therapies such as hemodialysis and kidney transplantation. In resource limited settings, these options are associated with catastrophic expenditures and increased household poverty levels. Early palliative care interventions, if shown to ensure comparable quality of life (QoL), can significantly mitigate this by focusing care on comfort, symptom control and QoL rather than primarily on prolonging survival. METHODS: A mixed methods longitudinal study, recruiting patients with End Stage Renal Disease (ESRD) on hemodialysis or conservative management and following them up over 12 months. The study aims are to: 1) measure and compare the health-related quality of life (HRQoL) scores of patients with ESRD receiving hemodialysis with those receiving conservative management, 2) measure and compare the palliative care needs and outcomes of patients in the two groups, 3) explore the impact of treatment modality and demographic, socio-economic and financial factors on QoL and palliative care needs and outcomes, 4) review patient survival over 12 months and 5) explore the patients' lived experiences. The Kidney Disease Quality Of Life Short Form version 1.3 (KDQOL-SF) will be used to measure HRQoL; the African Palliative Care Association Palliative care Outcome Score (APCA POS) and the Palliative care Outcome Score for renal symptoms (POS-S Renal) will be used to assess palliative care needs and outcomes; and semi-structured in-depth interviews to explore the patients' experiences of living with ESRD. Data collection will be carried out at 0, 3, 6, 9 and 12 months. DISCUSSION: To the best of our knowledge, no similar study has been conducted in sub-Saharan Africa. This will be an important step towards raising awareness of patients' need and preferences and the strengths and limitations of available health care services for ESRD in resource limited settings.

Palliative Care in Rwanda: Aiming for Universal Access.

In 2011, Rwanda's Ministry of Health set a goal of universal access to palliative care by 2020. Toward this audacious egalitarian and humanitarian goal, the Ministry of Health worked with partners to develop palliative care policies and a strategic plan, secure adequate supplies of opioid for the country, initiate palliative care training programs, and begin studying a model for integrating coordinated palliative care into the public health care system at all levels. It also initiated training of a new cadre of home-based care practitioners to provide palliative care in the home. Based on these developments, the goal appears within reach.

Improving care for people with heart failure in Uganda: serial in-depth interviews with patients' and their health care professionals.

BACKGROUND: The short prognosis of patients with advanced heart failure (HF) and the associated multidimensional distress as illustrated in literature from high income countries necessitates the integration of palliative care into the care of advanced HF patients to address these needs and improve their quality of life. These needs, which are subjective, have not been described from the patients' and health care professionals'(HPs) view point in the Ugandan setting, a low income country with a different socio-cultural context. This study aimed at bridging this gap in knowledge by eliciting patients' and HPs' views of HF patients' needs over the course of their illness to enable generalists, cardiologists and palliative care clinicians to develop guidelines to provide patient-centred realistic care in Uganda. METHODS: Serial qualitative in-depth interviews were conducted with HF patients who were purposively sampled and recruited in Mulago National Referral Hospital (MNRH) until thematic saturation. In-depth interviews were conducted at three time points with intervals of 3 month between interviews over the course of their illness in the hospital and their home context. One-off interviews were conducted with HPs that manage HF in MNRH. We used a grounded theory approach in data analysis. The Uganda National Council of science and technology approved the research. RESULTS: Forty-eight interviews were conducted with 21 patients and their carers and eight interviews with their HPs. Multidimensional needs including physical, psychological, social, spiritual and information needs were identified. These highlighted the underpinning need to have normal functioning, control, to cope and adapt to a changed life and to find meaning. Spiritual needs were less recognised by HPs than the other multidimensional needs. Information needs were commonly unmet. Patients and HPs suggested improvements in care that were congruent with the recommendations in chronic disease care and the six pillars of the WHO health systems strengthening approach. CONCLUSION: Management of HF in Uganda requires an approach that targets multidimensional needs, embraces multidisciplinary care and strengthens health systems which are all important tenets of palliative care.

A palliative care link nurse programme in Mulago Hospital, Uganda: an evaluation using mixed methods.

BACKGROUND: Integrating palliative care (PC) and empowering the health care workforce is essential to achieve universal access to PC services. In 2010, 46% of patients in Mulago Hospital, Uganda had a life limiting illness, of whom 96% had PC needs. The university/hospital specialist PC unit (Makerere/Mulago Palliative Care Unit -MPCU) implemented a link-nurse model to empower hospital nurses to provide generalist PC. Over two years, 27 link nurses were trained and mentored and 11 clinical protocols developed. The aim of the study was to evaluate the impact of the palliative care link nurse programme at Mulago Hospital METHODS: An evaluation approach utilising mixed methods was used integrating qualitative and quantitative data including: pre and post course assessment confidence ratings; course evaluation forms; audit of clinical guidelines availability; review of link-nurse activity sheets/action plans; review of MPCU patient documentation; Most Significant Change (MSC); individual and focus group interviews. RESULTS: A significant difference was seen in nurses' confidence after the training (p < 0.001). From July 2012 to December 2013, link nurses identified 2447 patients needing PC, of whom they cared for 2113 (86%) and referred 334 (14%) to MPCU. Clinical guidelines/protocols were utilised in 50% of wards. Main themes identified include: change in attitude; developing new skills and knowledge; change in relationships; improved outcomes of care, along with the challenges that they experienced in integrating PC. Since the start of the programme there has been an increase in PC patients seen at the hospital (611 in 2011 to 1788 in 2013). CONCLUSION: The link-nurse programme is a practical model for integrating PC into generalist services. Recommendations have been made for ongoing development and expansion of the programme as an effective health systems strengthening approach in similar healthcare contexts, as well as the improvement in medical and nursing education.

Implementing a Palliative Care Nurse Leadership Fellowship Program in Uganda.

Global oncology and palliative care needs are increasing faster than the available capacity to meet these needs. This is particularly marked in sub-Saharan Africa, where healthcare capacity and systems are limited and resources are stretched. Uganda, a country of 35.6 million people in eastern Africa, faces the challenges of a high burden of communicable disease and a rising number of cases of non-communicable disease, including cancer. The vast majority of patients in Uganda are diagnosed with cancer too late for curative treatment to be an option because of factors like poor access to healthcare facilities, a lack of health education, poverty, and delays resulting from seeking local herbal or other traditional remedies. This article describes an innovative model of nurse leadership training in Uganda to improve the delivery of palliative care. The authors believe this model can be applicable to other low- and middle-income countries, where health resources are constrained and care needs are great.
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Provision of palliative care for life-limiting disease in a low income country national hospital setting: how much is needed?

OBJECTIVES: This study aimed to measure the magnitude of palliative care needs among hospital inpatients. Objectives were to: (1) determine the point prevalence of inpatients with active life-limiting disease and (2) describe multidimensional need for palliative care among these patients. METHODS: The study was a hospital inpatient census in Uganda. Patient notes were surveyed and those patients identified as having an active life-limiting disease were interviewed. Multidimensional palliative care need was assessed using the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS). RESULTS: 122/267 (46%) patient notes were found to indicate an active life-limiting disease. Diagnoses were; HIV/AIDS (74/122, 61%), cancer (22/122, 18%), heart failure (11/122, 9%), renal failure (11/122, 9%), liver failure (3/122, 2%) and chronic obstructive pulmonary disease (1/122, 1%). A total of 78/122 patients consented to be interviewed. Most patients reported multidimensional need in the three most negative of six categories for any APCA African POS question (75/78, 96%). Social problems included an inability to work (72/78, 92%), having unaffordable medical expenses (39/78, 50%) and limited access to food (11/78, 14%). Of those with a faith (76/78), more than a third (29/78, 38%) expressed the need for increased faith support. CONCLUSIONS: The prevalence of active life-limiting disease reported here (46%) is greater than in comparable European studies (5-23%).This reflects the sub-Saharan increased disease prevalence, presentation at a later stage and limited access to curative therapies. There is need for symptom control, food, financial assistance and spiritual support. Service development should be tailored to meet these needs.

Palliative care in Africa since 2005: good progress, but much further to go.

There has been rapid progress in palliative care in Africa since the World Health Assembly in 2005 which identified palliative care as an urgent humanitarian need. Palliative care is now recognised as a basic human right, and momentum has gathered to translate this into action. From being significantly present in only five countries in 2004, palliative care is now delivered in nearly 50% of African countries. Even so, still less than 5% of people in need currently receive it, and with an estimated 300% increase in the need for palliative care for people with non-communicable diseases over the next 20 years, and with those living with HIV needing more prolonged support, the demand for palliative care will continue to outpace supply. African countries adopting a public health approach and networking together through palliative care associations are beginning to embed and integrate palliative care into health systems and communities. Current challenges are to increase coverage while maintaining quality, to develop dynamic and flexible responses to the changing illness patterns in Africa, and to counter false beliefs. Resourcefulness and harnessing new technologies such as mobile phones while respecting cultural traditions, may be the way forward. The authors review recent progress in policy, service provision and training initiatives in Africa, illustrate the current situation at grass roots level from a recent evaluation of programmes in Kenya, Malawi and Uganda, analyse the current urgent challenges and suggest some ways ahead.