In remembrance of our colleague and friend Catherine Pouget, MAPI Institute has set up a prize which bears Catherine's name, to be awarded annually for research contributing to the improvement of the quality of life for the terminally ill.

After a long and courageous battle against cancer, Catherine died on 3 July 2001 at the age of 31.

Catherine was one of the first to join the MAPI Institute in 1995. She had a real passion for the science of language and managed countless translations of questionnaires and played a vital part in structuring the linguistic validation department which now numbers over 50 people. Besides her project work, Catherine's efforts were devoted to internal staff training and lectures on translation issues at the University of Lyon. She was also in charge of building up and consolidating MPAI Institute's worldwide network of consultants. As one of the founding members of the Institute she is greatly missed not only for her contribution to our activity, but also as a friend with whom we shared cherished moments.

During the last year of her life she suffered greatly, not only from the effects of the illness and its treatment, but even more from the lack of understanding and compassion in those who were responsible for her. In her memory, MAPI Institute has for several years offered an award to support the design and implementation of projects intended to improve the quality of life of those who are terminally ill.

From 2009, the emphasis of the award will be more specific and more relevant to its original intention: to improve the quality of the interactions between patients and those involved in their treatment, rather than their quality of life in general.

How to apply?

List of winning projects:

2002 | 2003 | 2004 | 2005 | 2006 | 2007 | 2008 | 

How to apply ?

 Description

The Catherine Pouget award is not limited to projects with a scientific basis, in order to encourage those who may not have formal scientific training to make the best use of their experience in improving relationships between patients who are terminally ill and those responsible for their care and treatment. Proposals, whether strictly scientific in intention and design or not, may focus upon patients, their families, or medical and other carers but will have as their chief intention improvement in the quality of CARE that patients receive.

All applications will be evaluated by senior staff members of the MAPI Institute and its Advisory Committee. An award of up to a maximum of $10,000 will be made every year.

 Evaluation criteria

The criteria for evaluating proposals are Appropriateness (i.e., its relevance to the stated purpose of the award); Imaginativeness (i.e., originality of the concept and the method of its execution and evaluation); Realism (i.e., the likelihood that the defined objective and its evaluation will be achieved within the intended period – maximally two years); Generalisability (i.e., usefulness to other people or institutions in the field).

 The description of your proposal should clearly answer the following questions:

a.      What specific problem do you intend to address?
b.      What specific methods do you propose to employ to solve the problem?
c.       How will you show your work has been successful, or explain why if it is not?
d.      How much will your proposal cost (provide details; maximum  $10,000)?
e.      How do you intend to disseminate the results?

If relevant, briefly describe the subjects  (people) you intend to study and how you will find and recruit them; the manner in which you will handle your observations to decide if your work succeeded in what it set out to do; and pay particular attention to Ethical issues, including appropriate institutional review if necessary.

 Background information

On a separate sheet, give your date of birth; highest educational and/or professional qualification; major current professional (academic or research) position, if applicable, and relevance to the proposed research; and bibliographic references to not more than two or three of your own publications and/or public presentations (if available).
Applications for funding that permits components to be added to existing projects can be considered. The budget justification must address any overlap with funding, describing how new finding funding will enable activities that are not already supported.

 Form of Application

Applicants should submit not more than a maximum of 1500 words (approximately 4 double-spaced pages) in English. The text should preferably be submitted in pdf by e-mail to Tatiana Gauchon: This e-mail address is being protected from spambots. You need JavaScript enabled to view it  / This e-mail address is being protected from spambots. You need JavaScript enabled to view it

 
The final date for applications is 30 September 2010.

The successful applicant will be required to write up a summary of 300-400 words at the beginning, at mid-term and at the end of the project. These narratives will be published in the Patient Reported Outcomes Newsletter (PRONL).

Please submit proposal to:

Tatiana Gauchon / Maud Beswick, MAPI Institute, 27, rue de la Villette, 69003 Lyon, France
Tel: +33 (0) 472 13 65 75  Fax: +33 (0) 472 13 66 82
E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it / This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Applicant:

Colleen Nordstrom, PhD
Department of General Practice
University of Melbourne
Australia

Abstract:

Spirituality has recently become the subject of empirical health research. Although spirituality has long been recognized as a key component of palliative care, there remains little understanding of how terminally ill patients describe their spirituality and view its impact upon their quality of life and experience of pain. The purpose of this study is to determine how dying patients understand and define the term spirituality, in order to develop a model that offers both clinical and conceptual explanatory powers.

A cross-sectional design using semi-structured qualitative interviews will explore how individuals living with an advanced cancer diagnosis describe aspects of spirituality that influence their quality of life, in particular their management experience of pain. Theoretical and convenience sampling methods will be used to select participants with a primary diagnosis of cancer receiving either domiciliary or inpatient palliative care services. Sample size will be determined by theoretical saturation. First level of data analysis will involve a three-fold approach:
(1) individual narrative analysis;
(2) thematic analysis and
(3) content analysis of the three key concepts: spirituality, quality of life, and pain.
The spiritual Needs Model of Palliative Care Patients, proposed by Kellehear, will be used to undertake the second order data analysis to enable patterns of spiritual need, quality of life, and pain to be captured. This dimensional approach to researching spirituality enables aspects of the construct to be identified that may compound physical pain. The significance of this research lies in the clinical contribution that may result in improved quality of life, and potentially decreased pain, by identifying aspects of spirituality that can be employed as therapeutic interventions.

Final report published in the PRO Newsletter

Applicant:

George Demiris
Assistant professor of Health Informatics
University of Missouri
Columbia, MO 65211
USA
Website: www.telehospice-project.org

Abstract:

This study aims to measure the impact of videophone technology on the quality of hospice services, caregiver burden, patient satisfaction and cost of care. The goal of hospice care is to improve the quality of dying patients’ last days by offering comfort and dignity, focusing on palliation and the relief of suffering, individual control and autonomy. However, in many cases urban and rural patients approach end of life with limited or no access to hospice care.

Telemedicine, defined as the use of advanced telecommunication technologies to bridge geographic distance, has the potential to address some of the barriers to quality end of life care.

We propose a “telehospice” system based on the use of videophones that are portable, easy to use and can operate over regular phone lines as an enhancement tool for hospice care. We propose that patients in an intervention group receive traditional hospice care and additional “telehospice visits”, these will be compared to the traditional hospice patients that are not given the support of the videotechnology. The impact of the intervention on the following outcomes will be assessed: patient satisfaction, caregiver burden, crisis prevention rates and cost of care. Target sample size for the intervention group is 50 patients; another 50 patients will be assigned to a matched control group.

Final report published in the PRO Newsletter

“Quality of Life Outcomes in Adults Living with HIV/AIDS at Late Stage”

Applicant:

Alex Hakuzimana , MD
Rwanda Quality of Life Centre
Kigali city
Rwanda
Website: http://mangosee.com/mangosteen/rwqol/rwqolhome.htm

Abstract:

The increasing use of more effective antiretroviral drugs which control the progression of HIV infection, resulting in longer survival for HIV-infected patients has renewed the interest of scientists and clinicians on the quality of life of people living with HIV/AIDS.

Quality of life assessment is currently considered essential for clinical trials development as clinical and biological endpoints (CD4 level, viral load, opportunistic infections) are considered inadequate to catch the complexity of treatment outcomes.

Quality of life is defined as “an individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns”.

The occurrence of symptoms (namely dyspnea, oral and abdominal pain, discomfort, malaise, weight loss, severe headache, anorexia, vomiting, dizziness, paresthesia, fatigue, weakness, cognitive problems and others) at late stage of the HIV infection, besides financial and family problems such as stigma, isolation, loss of income has an impact on the quality of life of HIV-infected persons.

More attention should be given for a better management of these symptoms in order to increase the adherence to antiretroviral therapy and to other drugs against opportunistic infections.

The general aim of this research is to study longitudinally the evolution of quality of life in advanced HIV-infected adults with regard to clinical variables.

This research aims particularly at evaluating psychometric properties of the WHOQOL-HIV BREF in Rwandan adult HIV-infected patients at the late stage, comparing clinical variables with quality of life dimensions at the four waves and identifying contributing factors in the improvement and/or worsening of quality of life in the patients at late stage of the HIV infection.

Progress report published in the PRO Newsletter

Applicant:

Michael Echteld , PhD
VU University Medical Centre
Institute for Research in Extramural Medicine
Department of Public and Occupational Health
Van der Boechorststraat 7
1081 BT Amsterdam
The Netherlands

Abstract:

The proposed intervention study aims to achieve optimal quality of life in patients admitted to a hospital-based unit for palliative care and symptom control. Results of this intervention will be disseminated to other care facilities for terminally ill patients and to international networks.

The intervention entails collection of patients’ life areas / domains that affect quality of life the most by a specially trained nurse. A semi-structured interview instrument for individual quality of life will be used. Using the thus obtained information, the nurse will determine together with the attending physician and the head of staff which areas may benefit from an intervention. Multidisciplinary interventions will then be applied to all these areas.

A pilot study showed that patients may benefit from a quality of life intervention: Quality of life levels were lower than terminal patients in other care settings, and standard care in the unit did not identify all areas important to patients’ quality of life.

Patients who are expected to be admitted for at least 7 days and who have no cognitive deficits will be selected. Individual quality of life will be measured using the Schedule for the Evaluation of Individual Quality of Life (SEIQoL) at unit admission and at discharge / 14 days after admission. The effect of the interventions on individual quality of life will be assessed by comparing data from this study with data obtained in a pilot study.

Applicant:

Adil Ahmed
Research Registrar
Gastroenterology Dept
North Hampshire Hospital NHS trust, Basingstoke
& Honorary Registrar Kings College Hospital

Abstract:

Shared decision making, is where patients and health professionals join in both the process of decision-making and ownership of the decision made. Patient involvement in decision-making increases adherence to treatment choices and improves satisfaction and the appropriateness of interventions. Decision aids do a better job than standard care in improving patient’s knowledge about options and create more realistic expectations. They enhance active participation in decision making, lower decisional conflict and decrease the proportion of people remaining undecided.

Neuroendocrine tumours (NET’s) originate from neuroendocrine cells and present with hypersecretory syndromes characterised by flushing, diarrhoea and wheezing. In patients with incurable tumour there are several treatment options with risks and benefits varying from patient to patient. Decision making here is extremely difficult necessitating constant up-to-date medical evidence. The analytical process needed for tailoring it to individual patient is complex. Patient involvement in such a process is all the more difficult.

Decision analysis is a process that offers an explicit and systematic approach to decision making. It has already been used in a variety of health care settings including breast and ovarian cancer.

We aim to develop a computerised decision aid which will offer a decision analysis based opinion/recommendation as to the optimal course of action for patients with incurable metastatic NET’s. We will use the decision aid to elicit patient preferences regarding the available treatment options. This will be synthesised using decision analysis techniques with the up-to-date medical evidence already loaded in the decision aid. The decision aid recommendation will thus form a platform for the shared decision-making.

Applicant: 

Ardith Z. Doorenbos, PhD
Assistant Professor
School of Nursing
University of Washington
Seattle, USA

Abstract:

The growing diversity within countries throughout the world compels a corresponding growth in culturally-congruent care to ensure optimal and equitable health care outcomes. During end of life, a time of heightened stress for patients and their families, cultural congruence is essential to quality care. Hospice providers are key points of contact with patients and families; thus improving hospice providers’ cultural competence is central to the health care system’s ability to provide access to and delivery of high-quality, high-value health care to patients of all cultures.

This project is a repeated-measures research study designed to evaluate the effect of a web-based cultural competence intervention on hospice providers' cultural competence. The secondary goal for the study is to establish acceptability, feasibility, and potential effect size prior to a future longitudinal web-based cultural competence intervention for hospice providers. We will sample 60 providers from hospice agencies. The web based intervention; Culture & End of Life will be completed by study providers over a two month period. Providers' cultural competence will be assessed using the Cultural Competence Assessment tool at baseline and after completion of the Culture & End of Life intervention. At present, traditionally underserved groups continue to be underrepresented in available hospice programs. Improvement in provider cultural competence can lead to more culturally congruent care, a needed element in ensuring that members of underserved groups have equal access to quality care.

Applicant:

Lourdes  Marie S. Tejero, PhD
Assistant Professor
College of Nursing
University of the Philippines
Manila, Philippines

Abstract:

The patient’s sense of well-being, specifically that of the terminally ill, is facilitated through the interaction between nurse and patient.  The nurse and patient are no longer separate entities during the interaction, but a dyad. 

In this study, the different nurse-patient dyads that the investigator delineated in the preliminary studies will be incorporated in the Synergy Model developed by the American Association of Critical-Care Nurses.

In between the patient/nurse characteristics and outcomes of care, it is posited that the synergy is actualized in the nurse-patient dyad.   The outcomes ensue not from the characteristics of the nurse and patient per se but from the nurse-patient interaction.  The nurse-patient interaction as conceptualized in this study is an interplay of two factors, openness and engagement.  By openness is meant the willingness of the individual to manifest his/her own self, her personal characteristics, to the other.  Engagement on the other hand entails action, participation, involvement in the interaction.  Therapeutic interactions are characterized by high openness and high engagement between the nurse and patient.  If the interaction is therapeutic, then the desired outcomes will be realized.

The main goal of the study is to test the proposed theory asserting that the nurse-patient dyad mediates between nurse-patient characteristics and outcomes.  
  
This research paper will be utilizing methods triangulation.  Both quantitative and qualitative techniques will be employed to describe the phenomenon of the nurse-patient dyad.  The research will be done in selected units of the Philippine General Hospital and in another tertiary hospital.