Quality of life in terminally ill patients – a challenge for future research

2013 ◽  
Vol 21 (3) ◽  
Author(s):  
Cornelia Meffert ◽  
Gerhild Becker
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Clinical Studies ◽  
Palliative Medicine ◽  
Pain Therapy ◽  
Unsolved Problem ◽  
Terminally Ill ◽  
Future Research ◽  
Outcome Criterion

SummaryRecent statistics reveal a substantial and even growing need for palliative care in present-day society. Providing adequate pain therapy remains a largely unsolved problem, mainly because of the small number of clinical studies in palliative medicine. Hence, clinical research is urgently needed – and therefore suitable tools to measure outcomes must be developed. Contrary to typical clinical studies, the usual outcome parameters such as decreased mortality and/or morbidity are unsuitable. Future research should focus on developing an instrument which allows to measure quality of life as the central outcome criterion of clinical studies in palliative medicine.

Development a Palliative Care Program for Colorectal Cancer Patients: A Mixed Methods Protocol study (Preprint)

2021 ◽  
Author(s):  
Masoumeh Masoumy ◽  
Masoud Bahrami ◽  
Alireza sadeghi ◽  
Rohallah Mosavizadeh
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Palliative Care ◽  
Cancer Patients ◽  
Cultural Context ◽  
Care Program ◽  
Future Research ◽  
Palliative Care Program ◽  
Colorectal Cancer Patients

BACKGROUND Introduction: Colorectal cancer (CRC) is the third most common cancer in Iranian men and the second in Iranian women and it is a serious health problem in the Iran health system. OBJECTIVE Objective: The purpose is to develop a holistic palliative care program in order to improve the health and quality of life of colorectal cancer patients. METHODS Methods: This is an exploratory mixed methods study which will be conducted using a sequential qualitative-quantitative design (QUAL quan) consists of four sequential steps using the approach proposed by Ewles & Sminett to develop the program. In the first step, a qualitative study (semi-structured interview), the researcher discovers the needs of colorectal cancer patients from the perspective of patients, family members and care providers. In the second step, the literature review will be performed with the aim of confirming and completing the discovering new needs. In the third step, a initial draft of the palliative care program will be developed based on data extracted from qualitative study and literature review, experts’ panel opinions. In the fourth step, according to the opinions of the panel of experts, the part of the developed program will be implemented as quasi-experimental intervention and the effect of intervention on quality of life will be evaluated. RESULTS This study can will provide a better understanding of the demands and problems of colorectal cancer patients and their families through providing a holistic care and improve their quality of life in the socio-cultural context of Iran. This program can be useful in providing care, education, policy making, future research and colorectal cancer patients' health promotion. CONCLUSIONS This study can will provide a better understanding of the demands and problems of colorectal cancer patients and their families through providing a holistic care and improve their quality of life in the socio-cultural context of Iran. This program can be useful in providing care, education, policy making, future research and colorectal cancer patients' health promotion.

scholarly journals Ethical sensitivity and perceptiveness in palliative home care through co-creation

2019 ◽  
Vol 27 (2) ◽  
pp. 446-460
Author(s):  
Jessica Hemberg ◽  
Elisabeth Bergdahl
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Home Care ◽  
Future Research ◽  
Main Theme ◽  
Ethical Sensitivity ◽  
Ethical Perspective ◽  
Palliative Home Care ◽  
Dying Patients

Background: In research on co-creation in nursing, a caring manner can be used to create opportunities whereby the patient’s quality of life can be increased in palliative home care. This can be described as an ethical cornerstone and the goal of palliative care. To promote quality of life, nurses must be sensitive to patients’ and their relatives’ needs in care encounters. Co-creation can be defined as the joint creation of vital goals for patients through the process of shared knowledge between nurses, patients and their relatives. Aim: The aim of this study was to explore nurses’ experiences of caring encounters and co-creation in palliative home care from an ethical perspective. Research design, participants, and research context: A hermeneutical approach was used. The material consisted of texts from interviews with 12 nurses in a home care context. The method was inspired by thematic analysis. Ethical considerations: Informed consent was sought from the participants regarding study participation and the storage and handling of data for research purposes. Findings: An overall theme, a main theme and four sub-themes emerged. Through ethical sensitivity and perceptivity, nurses can balance their actions in the moment and change their nursing care actions according to the patient’s wishes through co-creation in encounters. Here the time is crucial, as the time needed is unique to each patient. Discussion: The themes together can be considered prerequisites for good palliative home care. If nurses fail to be sensitive and perceptive in encounters with dying patients, good palliative home care cannot be achieved. Ethical sensitivity and perceptiveness can also be considered a part of nurses’ ethical competence. Conclusion: Patients’ dignity can be preserved through ethical sensitivity and perceptiveness, which is fundamental for good palliative care. Co-creation from patients’ perspectives should be the focus of future research.

scholarly journals The assessment of quality of life in clinical practice in patients with schizophrenia

2014 ◽  
Vol 16 (2) ◽  
pp. 185-195 ◽  
Keyword(s):  
Quality Of Life ◽  
Clinical Practice ◽  
Negative Symptoms ◽  
Future Research ◽  
Cross Sectional ◽  
Affective Symptoms ◽  
Outcome Criterion ◽  
Pubmed Search

The aim of the present article is to review QoL scales used in studies investigating patients with schizophrenia over the past 5 years, and to summarize the results of QoL assessment in clinical practice in these patients. Literature available from January 2009 to December 2013 was identified in a PubMed search using the key words "quality of life" and "schizophrenia" and in a cross-reference search for articles that were particularly relevant. A total of n=432 studies used 35 different standardized generic and specific QoL scales in patients with schizophrenia. Affective symptoms were major obstacles for QoL improvement in patients with schizophrenia. Though positive symptoms, negative symptoms, and cognitive functioning may be seen as largely independent parameters from subjective QoL, especially in cross-sectional trials, long-term studies confirmed a critical impact of early QoL improvement on long-term symptomatic and functional remission, as well as of early symptomatic response on long-term QoL. Results of the present review suggest that QoL is a valid and useful outcome criterion in patients with schizophrenia. As such, it should be consistently applied in clinical trials. Understanding the relationship between symptoms and functioning with QoL is important because interventions that focus on symptoms of psychosis or functioning alone may fail to improve subjective QoL to the same level. However, the lack of consensus on QoL scales hampers research on its predictive validity. Future research needs to find a consensus on the concept and measures of QoL and to test whether QoL predicts better outcomes with respect to remission and recovery under consideration of different treatment approaches in patients with schizophrenia.

scholarly journals Brief Engagement and Acceptance Coaching for Hospice Settings (the BEACHeS study): results from a Phase I study of acceptability and initial effectiveness in people with non-curative cancer

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Nicholas J. Hulbert-Williams ◽  
Sabrina F. Norwood ◽  
David Gillanders ◽  
Anne M. Finucane ◽  
Juliet Spiller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Focus Groups ◽  
Advanced Cancer ◽  
Psychological Intervention ◽  
Qualitative Interviews ◽  
Future Research ◽  
Study Results ◽  
Palliative Care Setting

Abstract Objectives Transitioning into palliative care is psychologically demanding for people with advanced cancer, and there is a need for acceptable and effective interventions to support this. We aimed to develop and pilot test a brief Acceptance and Commitment Therapy (ACT) based intervention to improve quality of life and distress. Methods Our mixed-method design included: (i) quantitative effectiveness testing using Single Case Experimental Design (SCED), (ii) qualitative interviews with participants, and (iii) focus groups with hospice staff. The five-session, in-person intervention was delivered to 10 participants; five completed at least 80%. Results At baseline, participants reported poor quality of life but low distress. Most experienced substantial physical health deterioration during the study. SCED analysis methods did not show conclusively significant effects, but there was some indication that outcome improvement followed changes in expected intervention processes variables. Quantitative and qualitative data together demonstrates acceptability, perceived effectiveness and safety of the intervention. Qualitative interviews and focus groups were also used to gain feedback on intervention content and to make design recommendations to maximise success of later feasibility trials. Conclusions This study adds to the growing evidence base for ACT in people with advanced cancer. A number of potential intervention mechanisms, for example a distress-buffering hypothesis, are raised by our data and these should be addressed in future research using randomised controlled trial designs. Our methodological recommendations—including recruiting non-cancer diagnoses, and earlier in the treatment trajectory—likely apply more broadly to the delivery of psychological intervention in the palliative care setting. This study was pre-registered on the Open Science Framework (Ref: 46,033) and retrospectively registered on the ISRCTN registry (Ref: ISRCTN12084782).

scholarly journals Prognostic disclosure and quality of life in palliative care: a systematic review

2020 ◽  
pp. bmjspcare-2020-002460
Author(s):  
Sanhapan Wattanapisit ◽  
Richard Wagland ◽  
Katherine Hunt
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Palliative Care ◽  
Cochrane Library ◽  
Future Research ◽  
Prognostic Information ◽  
Social Functions ◽  
Cross Sectional ◽  
Emotional Aspects

IntroductionPrognostic disclosure is an important component of communication in palliative care. Disclosing information on poor prognosis may affect quality of life (QoL) of palliative care patients. However, the effects of prognostic disclosure on QoL across different cultures and countries are unclear.ObjectiveTo review the effects of prognostic disclosure on QoL of palliative care patients.MethodsA systematic review was conducted across seven databases (AMED, CINAHL plus, Cochrane Library, Medline (via the PubMed interface), Embase, Scopus and Web of Science). All primary studies, of any design, that explored the effects of prognostic disclosure on QoL of adult palliative care patients were eligible.ResultsA total of 1926 records were screened for eligibility. Twenty-five articles were included (11 cross-sectional, 10 cohort, 3 mixed methods and 1 qualitative study). Studies were conducted in 11 countries. Five studies reported the sources of prognostic disclosure, while 20 studies did not. Emotional QoL was the most reported domain among the studies. The effects of prognostic disclosure on emotional aspects, overall QoL and other domains, including symptoms, physical functions, role functions, social functions and cognitive functions, were inconsistent.ConclusionsThe effects of prognostic disclosure on QoL across cultures and countries are inconsistent. Cultural differences are not sufficient to explain the effects. Future research is needed to explore the association between prognostic disclosure and QoL, and develop tools to support clinicians to share prognostic information in the most sensitive and supportive way.

scholarly journals Dignity-conserving care for persons with palliative care needs — identifying outcomes studied in research: An integrative review

2020 ◽  
Vol 18 (6) ◽  
pp. 722-740 ◽  
Author(s):  
Annika Söderman ◽  
Ulrika Östlund ◽  
Carina Werkander Harstäde ◽  
Karin Blomberg
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Integrative Review ◽  
Future Research ◽  
Healthcare Organizations ◽  
Care Needs ◽  
Study Protocols ◽  
The Social ◽  
Palliative Care Needs

AbstractObjectivesWith people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized.MethodsAn integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis.ResultsSeven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of “Performance, symptoms and emotional concerns” and “End-of-life and existential aspects”. Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as “Dignity-related distress” and “Quality of life” were common. However, the results lacked concrete communication outcomes.Significance of resultsThe results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

Improving the quality of life of terminally ill oncological patients: the example of palliative care at Hospice Villa Speranza

2013 ◽  
Vol 9 (6) ◽  
pp. 771-776 ◽  
Author(s):  
Adriana Turriziani ◽  
Gennaro Attanasio ◽  
Santina Cogliandolo ◽  
Francesco Scarcella ◽  
Luisa Sangalli ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Terminally Ill ◽  
Oncological Patients

Palliative care in old age

2001 ◽  
Vol 11 (2) ◽  
pp. 149-157 ◽  
Author(s):  
Raymond SK Lo ◽  
Jean Woo
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Palliative Medicine ◽  
Holistic Approach ◽  
Physical Symptoms ◽  
World Health ◽  
Team Approach ◽  
Curative Therapy ◽  
Care And Support

What is palliative medicine?In 1987, the Royal College of Physicians recognized palliative medicine as a specialty, defining it as ‘the study and management of patients with far-advanced disease for whom the prognosis is limited and the focus of care is quality of life’. In 1990, the World Health Organization added its definition, ‘the active and total care of a person whose condition is not responsive to curative therapy’. The aim of palliative medicine is to control pain and other physical symptoms, together with integration of psychological, social, spiritual care and support. The ultimate goal is to help patients to achieve their best quality of life. Palliative medicine places emphasis on a holistic approach, offering care and support not just for patients but also for their families. Palliative medicine hence requires an interdisciplinary team approach. With the co-ordinated efforts of all disciplines (such as doctors, nurses, therapists, social workers, clinical psychologists, dieticians, pastoral care workers and volunteers), patients can be supported in living their remaining lives as actively as possible, and families can be assisted in coping with illness, death and bereavement. Palliative care neither intends to postpone death nor does so, but affirms life and regards dying as a normal process. When a patient faces an incurable illness, it is incumbent on the palliative care team to provide the best treatment and care, adding life to days when days cannot be added to life.

The oncologist’s role in delivering palliative care

2021 ◽  
pp. 787-799
Author(s):  
Nathan I. Cherny ◽  
Stein Kaasa
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Patient Care ◽  
Cancer Patients ◽  
Continuity Of Care ◽  
Cancer Care ◽  
Palliative Medicine ◽  
Collaborative Practice ◽  
Interdisciplinary Care

The division of cancer care into initial primary antitumour therapies followed by hospice or palliative care for patients who have progressive disease is anachronistic. Since the goals of medical oncology extend beyond the reduction of tumour burden and the deferral of death and incorporate a quality-of-life dimension, there is need for a continuum in patient care independent of whether the treatment intention is curative, life-prolonging, or symptomatic. Palliative care interventions should be integrated according to the clinical circumstances of the patient. This chapter outlines the oncologist’s role in the delivery of palliative care to cancer patients, emphasizing issues related to communication, interdisciplinary care, and collaborative practice with palliative medicine experts, and emphasizing principles of non-abandonment and continuity of care.

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