Project Panda
PANDA Overview
PANDA seeks to use qualitative methods to understand what matters to patients in their receipt of surgical care, to prioritise these themes, and explore differences across countries and contexts. Design and delivery of PANDA will be informed by patient and community representatives, with the explicit aim of growing networks for local community involvement in LMICs. Use of qualitative methodology to explore patients experiences of surgical treatment in depth in this study will have several advantages.
Firstly, it will allow deep conceptual understanding of patient’s priorities during their surgical care journeys. Whilst each patient will have their own unique care story, there are likely to be commonalities to patient experience which could underpin patient-centred design for large, multi-country research studies. Secondly, working with patients and community representatives to co-produce and prioritise themes will help improve capacity and leadership for CEI in low-resource settings. Thirdly, through talking to patients about research topics in depth we will improve ‘research literacy’ amongst local populations, and help to identify new patient partners for research involvement in global surgery.
Through co-production of the PANDA study between patients, community members and research team members in LMICs, the key principles of sharing power, building relationships, diverse perspectives, respect and reciprocity for successful CEI will be upheld.
Research exploring patients experiences of surgical care has predominantly focussed on the preoperative setting (i.e., access to care). Qualitative studies of the perioperative care pathway have focussed on providers resilience to resource shortfalls, system level factors impacting on care delivery, and preoperative optimisation checklists. Few studies have focussed on patient priorities for their surgical care, and none in LMICs. In a study with a similar methodology in Sweden (high income) four areas were highlighted including accessibility, reliability, caring attitudes and empowerment.
For patients undergoing head and neck cancer surgery in an Australian hospital (high-income), psychological support for ‘shocks and aftershocks’ was prioritised as a key research area. There is an urgent need to understand patients experiences and priorities for surgical care in LMICs to inform future research planning and design.
You can view further information on the study via the recently created PowerPoint presentation.
0
CONTINENTS
0
COUNTRIES
0
HOSPITALS
0
PATIENTS RECRUITED
PANDA Aims
- To explore and describe patients experience of perioperative care pathways in LMICs
- To identify and prioritise concepts and themes for research in global surgery with patients in LMICs
- To explore the feasibility of flexible, collaborative co-production of research between LMIC researchers, patients and UK researchers in global surgery.
- To build capacity for CEI through identifying, training and involving patients and community members in the PANDA study.
Key Documents
PANDA Protocol can be obtained here
PANDA Patient Consent form can be accessed here
PANDA Patient Information sheet can be accessed here
PANDA topic guide can be accessed here
Project Burns
Burns are a significant contributor to the burden of disease in low- and middle-income countries (LMIC). Although current guidelines recommend treatment in specialized treatment centres, such centres are few or non-existent in many LMIC settings.
This study is a prospective observational study comparing outcomes of burns treatments between non-specialised and specialised burns units.
Led by Dr Chikwendu Ede and Dr Rachel Moore from the NIHR Global Surgery Unit hub in South Africa, this is a prospective observational study comparing outcomes of burns treatments between non-specialised and specialised burns units. Information on 90 day mortality will be collected over a 6 month period at up to 9 non-specialised hospitals treating adult burns patients and compared to outcomes for patients at a dedicated burns unit at Chris Hani Baragwanarth Academic Hospital in Soweto, Johannesburg.
“We are currently assembling the information for this page which will be published soon. Thank you for your patience and please visit us again soon to see the updated information.”
Project Access
The majority of the world’s population lack access to timely hospital care. In low & middle income countries, 98% of patients lack access to safe, affordable surgical care.
Those that do reach hospital often experience delays in their care, contributing to the observed increased death rates in LMICs.
Our Access to Surgical Care project is surveying patients, policy makers and healthcare providers to identify the barriers and potential solutions in order to improve access to surgical care for patients in LMICs.
“We are currently assembling the information for this page which will be published soon. Thank you for your patience and please visit us again soon to see the update information.”
0
CONTINENTS
0
COUNTRIES
0
HOSPITALS
0
PATIENTS RECRUITED
Bringing together surgeons, researchers and policy makers to set the local research agenda according to patient need in LMIC and ensuring all patients have the opportunity to take part in our research.
Global Surg 3
About GlobalSurg 3
GlobalSurg 3 is a multicentre international study determining quality and outcomes in global cancer surgery for breast, gastric and colorectal cancer. Any hospital performing surgery for breast, gastric, or colorectal cancer anywhere in the world is eligible to take part. Across centres worldwide, mini-teams of up to 3 collaborators will collect data for a four-week period between April and October 2018, with a 30 day follow up.
GlobalSurg 3 aimed to determine the variation in quality of cancer care surgery worldwide. The study concentrated on the most surgically-treated cancers worldwide: breast, gastric and colorectal cancer.’
Validating data is important in ensuring that the results obtained for the study are of high quality. The aim is to achieve this by assessing the methods used for patient identification, data collection and patient follow up. The process itself will involve three parts:
A. Patient identification and follow up
B. Independent Validation
C. National Lead and Hub Country Interview
Global Surg 2
About GlobalSurg 2
GlobalSurg 2 aimed to determine worldwide surgical site infection (SSI) rates following gastrointestinal surgery. The primary outcome measure for the study was 30 day surgical site infection rate.
Teams of 3 collaborators collected data for two week periods on all consecutive (i.e. one after the other) patients undergoing elective or emergency gastrointestinal surgery. There was no minimum number of patients per centre, so long as all eligible patients during the two week data collection period were included. Teams could collect any two week period they wished between Jan and July 2016, with 30 day follow up. Multiple teams at any participating centre were encouraged provided they collected non-overlapping two-week periods, and each team could collect one than one two week period if they wished.30 datapoints per patient were collected via a secure online website.
12,539
PATIENTS
343
HOSPITALS
66
COUNTRIES
View the GlobalSurg 1 results in a snapshot
Global Surg 1
About GlobalSurg 1
GlobalSurg I aimed to identify variation in outcome of emergency intra-abdominal surgery across international settings in order to determine whether globally relevant quality improvement strategies are needed within acute surgical units.
The study ran from July to November 2014. Contributors collected data on consecutive patients undergoing emergency intra-peritoneal surgery (excluding Caesarean section) over a two-week period in their local centres.
Patients were reviewed 24-hours post-surgery to determine whether they are dead or alive and any in-hospital complications by 30-days were determined. 30 datapoints per patient were collected and submitted to the study via a secure online website.
10745
PATIENTS
375
CENTRES
58
COUNTRIES
View the GlobalSurg 1 results in a snapshot
Project Tiger Case Study
CEI STARFISH Case Study
More information about our work in rural Ghana will be published soon. Until then, please have a look at the poster we presented at our annual GSU prioritisation workshop in Accra, Ghana, in November 2019.
Bringing together surgeons, researchers and policy makers to set the local research agenda according to patient need in LMIC and ensuring all patients have the opportunity to take part in our research.
Project Starfish Case Study
CEI STARFISH Case Study
SToma cARe For Improvement reSearcH (STARFISH): Epidemiologic study of stoma cases in Lower- and Middle-Income Countries and qualitative research on the challenges of stoma care
The reasoning behind the STARFISH study
The STARFISH study was proposed in 2019 by Dr Carmela (Mela) Lapitan, who heads our NIHR GSU Centre in The Philippines.
Mela says even though there has been immense research done into stoma care in high income countries with patients now being well supported and top notch appliances being provided, there is little research into practical problems, as well as feasible and affordable solutions in low resource settings. Her NIHR-funded STARFISH study therefore sets out to assess the burden and experience of stoma surgery and the challenges of stoma care in LIMCs with the aim to capture patients’ biggest challenges, particularly on access to and availability of stoma appliances, and to generate information and develop methods to encourage further research.
Patients Doing Research vs. Patients Being Researched
As outlined in the ‘Background’ video, the study is heavily patient-centered with a major aspect of it being focus groups and one-to-one interviews with stoma patients, informal caregivers, health care providers and staff involved in stoma care services to gather information on experiences, priorities, challenges and coping strategies relating to stoma care. Mela therefore felt it was crucial to involve patients in the design of the study to help highlight barriers to participation and inform the smooth running of focus groups and interviews. Patients being part of the research team: A new concept in The Philippines that turned out to have its challenges and obstacles.
In the next video, Mela outlines the why, how and what of patient involvement with STARFISH.
Mela experienced the ‘challenge of engaging a patient as part of the research team because of very poor awareness on research and their potential contribution to such beyond being a participant.’ – Something that the Global Surgery Unit encounters in other LMICs, as well. Is this highlighting the need for more health education?
Take Home Messages
Mela’s Top Tipps
If possible, learn from other’s experience and utilise their expertise,
E.g. for STARFISH: Early engagement of a social scientist with links into communities in the conceptualisation and design of the study
Make sure that involved patients or community members represent people relevant to your study, preferably with lived experience
If possible, engage with patient groups. This will not only help inform and shape the study, but also help with recruitment of participants later on
Bringing together surgeons, researchers and policy makers to set the local research agenda according to patient need in LMIC and ensuring all patients have the opportunity to take part in our research.
Project Crocodile
CatastROphic expenditure among COlorectal cancer patients in InDIa and barriers for treatment compLiancE (CROCODILE)
Research topic and its relevance:
Little is known about colorectal cancer treatment delivery in India and the associated costs. The aim of this study is to identify financial and non-financial barriers for colorectal cancer treatment compliance in India.
Financial protection is one of the global health priorities defined by the WHO (Sustainable Development Goal 3.8) and mitigating against catastrophic expenditure has also been prioritised by the Lancet Commission on Global Surgery.
0
CONTINENTS
0
COUNTRIES
0
HOSPITALS
0
PATIENTS RECRUITED
Study Design:
CROCODILE is a mixed-methods study including:
1. A quantitative workstream: prospective cohort feasibility study to assess catastrophic expenditure and treatment compliance rates among colorectal cancer patients in four hospitals in India.
2. a qualitative workstream: to explore patients and professionals perspectives on barriers and facilitators for treatment compliance.
Methodological details:
Quantitative workstream: Catastrophic expenditure will be defined as treatment cost being higher than 40% of non-subsistence household income. Treatment costs will include medical, non-medical and indirect expenses. Income assessment will be compared between three methods: patient-reported income, through the International Wealth Index and through the Gapminder tool.
Qualitative workstream: individual semi-structured interviews will be performed with colorectal cancer patients and cancer care professionals. A framework analysis will be performed from the raised categories.
The results will be triangulated with the quantitative workstream for mutual knowledge enrichment.
CROCODILE within the NIHR Global Health Research Unit on Global Surgery:
The feasibility of catastrophic expenditure data collection will be tested in this study, to inform future larger scale studies on the topic. It will also generate pilot work in the India setting, to be used in policy informing studies through modelling or other methodologies.
Project Feather
Retention is a major challenge in international trials, and has been recognised as a global research priority through a James Lind Alliance Priority Setting Partnership. The Standard Protocol Items: Recommendations for Interventional Trials’ (SPIRIT) guidelines define non-retention as ‘instances where participants are prematurely “off-study” (i.e., consent withdrawn or lost to follow-up) so outcome data cannot be obtained from them.
Trial retention may be particularly challenging in low resource settings where patients may have to travel long distances to return to hospital or take further time out of work where they are already financially vulnerable following their index operation. Minimising burden on trial participants during trial follow-up and identifying culturally-attuned methods for encouraging ongoing participation may reduce risk of both risk of attrition bias and the cost randomised studies. However, there is insufficient evidence to make recommendations for global surgery studies.
FEATHER is an investigation using qualitative methods embedded within several international multi-centre randomised trials (a study within a trial or SWAT).
Key Documents
You can view the FEATHER protocol here.
FEATHER Topic Guide – Patients can be accessed here.
FEATHER Topic Guide – Site Investigator can be accessed here.
FEATHER Patient Identification Log A can be accessed here.
FEATHER Patient Identification Log B can be accessed here.
FEATHER PIS – Adult can be accessed here.
FEATHER PIS – Stakeholder can be accessed here.