Associate Professor Konstadina Griva (Department of Psychology) recently received the FASS Award for Excellent Researcher (AER) which is presented to researchers based on the overall impact and strength of their research. The successful researcher would have “achieved consistent research excellence, produced a piece of research of great impact and be recognised by the research community as having achieved a significant breakthrough.”
A/P Griva is an accomplished awardee. She is an internationally recognized leader in the field of psychonephrology, which is an appreciation of the psychological and social issues affecting those living with the physical burden of kidney disease. Her Hemodialysis Self Management Randomized Trial (HEDSMART) landed a research award from the European Renal Association – European Dialysis Transplantation Association (ERA_EDTA). HEDSMART is also the largest Randomized Controlled Trial of psychological intervention for renal patients (sample size of 242), comprehensive assessments of clinical endpoints, behaviours and adjustment indicators, and inclusion of long-term follow up assessments (12 & 24 months) to explore sustainability. HEDSMART has contributed to further competitively funded research: the Combined Diabetes and Renal Control Trial (C-DIRECT), sponsored by Singapore’s National Kidney Foundation, and an Agency for Integrated Care-funded diabetes adaptation of the programme set to run from 2017 to 2020.
We congratulated A/P Griva and spoke to her about her research work.
Your nomination for this award was heavily due to HEDSMART, a Hemodialysis Self Management Randomized Trial that ran from 2009 to 2014 and assessed the short and long term effects of a practical, low intensity self-management intervention for hemodialysis patients from ethnically diverse backgrounds who have low socioeconomic status. How did you and your research team come to develop HEDSMART?
My work in the field of PsychoNephrology has spanned more than 20 years now – while my earlier renal research work was on mapping key patient outcomes across the journey, ultimately the goal was to put research in the service of patients and providers and contribute to improved patient care. To this end, the priority has always been the development of programmes to help patients with long-term conditions to get the best from treatment by supporting optimal adherence or better allowing existing health services to meet patients’ needs.
Interventions specifically designed for CKD patients are limited (at best) – which contrasts the abundance of support programs for patients of other conditions (such as diabetes). HEDSMART was conceived to address this gap. The intention was to develop a feasible, light touch intervention to support patients on dialysis. Pragmatic, feasible and culture sensitive were key considerations in this work. We opted to develop HEDSMART using a ‘bottom-up approach’ seeking input from various stakeholders rather than ‘transplant’ packages from other settings. The work was guided by psychological principles but foci, content, and delivery/implementation procedures were finalised following extensive formative work with patients in the local context and input from renal health providers so as to ensure relevance and good engagement for users and frontline staff respectively. While the program was mainly to address and support patients, we placed equal weight on supporting the staff involved (facilitators) who were the ‘lifeline’ of the project by developing a training course, complete manual and debriefing/mentoring opportunities in the pilot phase of the research. We are grateful for the hard work of many people on both research and implementation who have made this work possible – and truly consider HEDSMART an exemplary partnership of front care staff in NKF and researchers in NUS and UK for improved patient care.
What initially drew you to the field of psychonephrology?
When I embarked on my work in the field I was surprised by dearth of studies on renal population(s). Much of the evidence was either lacking or was somewhat outdated/conducted in the 1970/80s when models of renal care were different. I wanted to revisit key questions with a stronger methodology and to fill in gaps left unaddressed in the limited literature. The questions remain relevant today as numbers of patients with CKD are rising rapidly due to ageing and diabetes.
From the behavioural medicine perspective, there are few parallels for the burden of Chronic Kidney Disease/End Stage Renal Disease for patients and health care systems. Aside the staggering costs, CKD has a profound effect on all aspects of life and functioning including cognitive capacity, identity, emotions, family, relationships, and employment -
Patients are facing an intense, complex and demanding treatment regimen, dependence on artificial means for survival (dialysis), and multiple difficult treatment decisions and transitions. These may regard the commencement of dialysis, a switch from one treatment type to another (as in the case of patients receiving a kidney transplant), patients withdrawing from dialysis or converting from one modality (home based dialysis, peritoneal dialysis) to in centre hemodialysis, and/or a return to dialysis after graft failure.
The various renal replacement modalities have distinct characteristics, including different delivery methods (eg, in-center vs. at home), schedules (intermittent vs. daily; nocturnal vs. daytime), requirements for self-care (eg, clinician-directed or carer-assisted vs. self-care), and physical invasiveness (eg, need for catheters or surgery). Renal care is a journey for patients and families.
Renal Dialysis Technician by wlstechcolleges (Flickr)
Your 2016 article Quality of life and emotional distress in patients and burden in caregivers: a comparison between assisted peritoneal dialysis and self-care peritoneal dialysis published in Quality of Life Research suggested that caregiver burden and quality of life should not prevent the use of assisted peritoneal dialysis (PD). What most intrigues you about this finding?
The lack of differences between assisted PD and self care PD is compelling as it challenges the notion that PD is only or best suited for young and ambulatory patients who can self-care and self-administer treatment at home. Outcomes for assisted PD – ie. patient dependence on caregivers for performance of PD were comparable and the burden to their caregiver was NOT higher. The findings would therefore support expanding utilization of assisted PD to cater to the growth of frailer elderly people or patients who are unable to self care and require dialysis by supporting dialysis at home, away from tertiary care centres.
Focal to my research work are patient-reported outcomes (i.e. quality of life; emotional adjustment, behavioral responses) – such measures capture patients’ experience and have prognostic value and utility over and beyond clinical markers/indicators. Good measurement (reliable, valid, sensitive) and pertinent to the population under study are however important.
You developed the Transplant Effects Questionnaire to measure emotional and behavioural responses to transplantation. This questionnaire has been adapted for kidney, liver, heart, and lung transplant populations, translated into German, Dutch, and Turkish, and has hundreds of registered users worldwide. Could you shed light on how you developed it?
The Transplant Effects Questionnaire (TxEQ), a transplantation specific tool to measure emotional and behavioral responses to transplantation was developed as part of my research with renal transplant patients in the UK. Developing a questionnaire is a challenging and arduous ‘task’ – at best to be avoided, as I typically advise my research students. Yet we felt the TXEQ was timely and much needed as evidence indicated a range of areas and concerns of transplantation not captured in existing measures. We have developed the measure based on an extensive review of the transplantation literature, a transplant focus group and in-depth interviews with transplant recipients and two research studies comprising more 330 kidney transplants.
The combined approach of such quantitative and qualitative methodologies was thought to be the best approach to capturing transplant recipients’ perspectives on their post-transplant experience and establishing the psychometric properties of the questionnaire. The instrument has been well received in the transplantation community – it has been translated in other languages. We have recently completed a study at NUH using the TXEQ with renal transplant recipients in Singapore.
How do you foresee your findings being incorporated in related fields of behavioural science and health psychology?
I believe my work has contributed to scientific and empirical literature of my field (Behavioural Science/Health Psychology) by mapping key outcomes across a course of diseases and treatments (neuropsychological, behavioural and emotional) for a population, which not been well researched, and by advancing measurement (e.g. the Transplant Effects Questionnaire). Like most researchers however, I would like to see my research work transcending the realms of my scientific field/discipline (Health Psychology/Behavioural) - contributing to better care and health services.
It does sound rather cliché but ultimately everybody that chooses a career in caring professions (including Psychology) aspires to be helpful to others. I have hence strived to align my research with issues of more direct relevance to patients’ experience and heart so that my work has both scientific and pragmatic value:
(a) by alerting the health care community to key challenges and support needs of their patients – e.g. symptoms of depression, and cognitive impairments related to dialysis that may compromise adjustment or highlighting their misperceptions and misunderstanding that may hinder the decision making process and hence may need to elicited or addressed in consultations/pre-dialysis care.
(b) by informing the development of support programs (adjust to usual care) such as HEDSMART to improve outcomes for patients.
What are some of the research topics you are preparing to work on in the future?
In terms of my future research plans I would like to continue my work in the field of long-term conditions and focus more on scalability and sustainability of interventions to extend care beyond tertiary settings.
Some key themes and directions are as follows:
(a) Develop programs to support culture-sensitive home-based care for people with long term conditions in their communities and with their caregivers/family members through the use of technology. I would like to contribute to the development and evaluation of telehealth-based care for wide pool patients and their caregivers. This line of work can have great value for key clinical issues such as increasing utilisation and penetration of peritoneal dialysis regimes, supporting chronic disease management by patients and caregivers, decongesting tertiary care by obviating routine appointments and allowing more room for 'on demand' appointments.
(b) Initiate a research programme to specifically target the fast growing numbers of patients who have multiple co-morbidities/coexisting conditions. With the ageing of the population and the increased prevalence rates of diabetes, patients with multiple diagnoses have already become the norm of health care users. The presence of multiple chronic conditions increases the burden of disease and negatively influences health status beyond the sum of the effects of each single condition. The importance of managing co-existing chronic conditions is critical to slow progression and prevents associated complications, yet this is particularly challenging for patients and health care providers alike. Nevertheless health care systems worldwide continue to focus on the treatment of single disease at a time, a fragmented approach, which does not match the profile of typical patient nowadays. Likewise, psychological support programs and interventions have failed to address the needs of these patients. Up to date there has been a reliance on very intensive interventions delivered in tertiary care settings by leading experts and multidisciplinary teams with highly selected, motivated, and uncomplicated patients. I therefore aim to expand and build on my experience with chronic disease populations by exploring the multiple needs of patients with multiple co-morbidities and coexisting conditions with the view of developing and evaluating models of support interventions to facilitate adjustment and improve outcomes.
Thank you, A/P Griva. We wish you well in your future projects.