Understanding Quality of Life for Palliative Patients With Dysphagia Using the Swallowing Quality of Life (SWAL-QOL) Questionnaire

2021 ◽  
pp. 104990912199253
Author(s):  
Laurence Lean Chin Tan ◽  
Yujun Lim ◽  
Peiyan Ho ◽  
Lee Yen Lim ◽  
Ying Yin Lim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Palliative Care ◽  
Symptom Score ◽  
Food Selection ◽  
Palliative Patients

Objective: There are few studies concerning the differences in quality-of-life (QOL) between palliative care patients with and without dysphagia to date. We aimed to compare the QOL and symptoms in palliative patients with and without dysphagia using Swallowing Quality of Life (SWAL-QOL). Methods: Eighty-one palliative patients with and without dysphagia underwent the SWAL-QOL questionnaire. A series of Mann Whitney U tests were performed between non-dysphagic and dysphagic groups for the total SWAL-QOL score and the 11 SWAL-QOL domains. Results: Dysphagia significantly impacted patients’ QOL in the dysphagic group (mean, 69.5; SD 21.9) than non-dysphagic group (mean, 83.2; SD 14.8) ( P = 0.006). Significant differences were observed between both groups for the domains of burden, eating desire, eating duration, symptoms, food selection, communication and mental health. The results also showed that the dysphagic group had lower symptom score across all symptoms, suggesting higher symptom burdens. Conclusions: This study is the first to examine QOL and swallow symptoms in palliative care patients with and without dysphagia. Dysphagia causes significantly worse QOL in palliative care patients. Screening for dysphagia and managing its impact on symptoms and QOL domains is important in palliative care.

scholarly journals A scoping review of palliative care outcome measures in interstitial lung disease

2021 ◽  
Vol 30 (161) ◽  
pp. 210080
Author(s):  
Rebecca A. Gersten ◽  
Amanda C. Moale ◽  
Bhavna Seth ◽  
Judith B. Vick ◽  
Hannah Brown ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Palliative Care ◽  
Physical Health ◽  
Outcome Measures ◽  
Secondary Analysis ◽  
Social Health ◽  
Cross Sectional ◽  
Care Outcome

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.

The Physical Hospital Environment and Its Effects on Palliative Patients and Their Families: A Qualitative Meta-Synthesis

2021 ◽  
pp. 193758672110329
Author(s):  
Elizabeth M. Miller ◽  
Joanne E. Porter ◽  
Michael S. Barbagallo
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Hospital Environment ◽  
Room Size ◽  
Centered Care ◽  
Palliative Care Units ◽  
Qualitative Literature ◽  
Palliative Patients

Aim: To review the latest qualitative literature on how the physical hospital environment affects palliative patients and their families. Background: People with a life-limiting illness may receive palliative care to improve their quality of life in hospital and may have multiple admissions as their illness progresses. Yet, despite a preference for a death at home, more than half of the dying population will receive end-of-life care in hospital. The physical hospital environment consists of ambiance, aesthetics, and architectural factors, and it is well known that the hospital’s acute wards are not a homely environment. Demand is increasing for the physical environment to be improved to better meet the needs and demands of palliative and end-of-life patients and their families. Method: Combining thematic analysis and meta-ethnography methodologies, 12 international qualitative papers were analyzed and synthesized by the three authors. Results: Findings resulted in the development of the SSAFeR Place approach that incorporates the concepts that are important to palliative and end-of-life patients and their families by describing an environment within the acute or palliative care units that feels safe, is private, customizable, and accommodates family; is a space to share with others, is homelike in ambiance and aesthetics, and is conducive for reflection. The concepts of identity, belonging, and safety are connected to the notions of home. Conclusions: To provide person-centered care and to move the focus toward the palliative approach of comfort and quality of life, attention to room size, layout, aesthetics, and ambiance is needed.

scholarly journals SPIRITUAL PASIEN PALIATIF DI RUMAH SAKIT, YOGYAKARTA SPIRITUALITY OF PALLIATIVE PATIENT IN HOSPITAL, YOGYAKARTA Milatul

2019 ◽  
Vol 7 (3) ◽  
pp. 265-271
Author(s):  
Milatul Afifah ◽  
Arianti
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Univariate Analysis ◽  
Sampling Technique ◽  
Mean Values ◽  
Palliative Patient ◽  
The Mean ◽  
Descriptive Survey ◽  
Palliative Patients

Background: Palliative care goal is to improve the quality of life of the patient. Spiritual is believed can improve the quality of life in palliative patients. Objective: The purpose of this research is to identify the spiritual status of palliative patients in PKU Muhammadiyah Gamping Yogyakarta Hospital. Methods: This study is a non-experiment research. It used descriptive survey research method with 100 subjects which used total sampling technique. FACIT-Sp is choosen based on this validity(r=0,5) dan realibity (r=0,768) to get the spiritual status of the sample. Results: The result of univariate analysis showed that the spiritual level of palliative patients in PKU Muhammadiyah Gamping Hospital with the mean values of 36,79 (0-48) and the spiritual component consisted of mean is 12,26 (0-16), faith is 12,85 (0-16) and peace 68 (0-16). Conclusion: The spiritual status of palliative patients at Muhammadiyah Gamping Yogyakarta Hospital in the categories of meaning, faith, peace and spiritual level most have passed the cut of point, it showed that the palliative patient is headed to the good spiritual. Keyword : Palliative care, spiritual, mean, faith, peace

Impact of COVID-19 on Mental Health of Palliative Care Professionals and Services: A Mixed-Methods Survey Study

2021 ◽  
pp. 104990912110570
Author(s):  
Wallace Chi Ho Chan ◽  
Raymond Kam Wing Woo ◽  
Denis Ka-Shaw Kwok ◽  
Clare Tsz Kiu Yu ◽  
Lawrence Man-Hon Chiu
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Palliative Care ◽  
Mixed Methods ◽  
Professional Quality Of Life ◽  
Care Services ◽  
Professional Quality ◽  
Palliative Care Services ◽  
The Impact

Introduction This study aimed to examine the mental health of palliative care professionals in Hong Kong during the COVID-19 pandemic, the relationship of mental health with socio-demographic factors, and the impact of the pandemic on palliative care services. Methods A total of 142 palliative care professionals in Hong Kong participated in an online survey. The questionnaire includes measurements on depression, anxiety, perceived stress, post-traumatic stress, professional quality of life, items that measure the effect of COVID-19 on palliative care services, and one open-ended question for describing how the services were affected. Descriptive and multivariate regression analyses were conducted. Quantitative and qualitative data about the impact of COVID-19 on palliative care services were analyzed and triangulated using a mixed-methods approach. Results Up to 82%, 43%, and 42% of the participants felt moderately to highly stressed, anxious, and depressed, respectively, during the pandemic. Younger participants tended to have poorer mental health and professional quality of life. Around 82% felt stressed when communicating with patients and family members under the no-visiting policy during the pandemic. More than three-quarters of participants showed lack of confidence in the anti-epidemic policy of the government. Qualitative findings identified 3 themes affecting the provision of palliative care: 1. the tightening of restrictions on visitors; 2. the limited provision of services; and 3. staff deployment. Conclusions Appropriate responses are required to give extra support to palliative care professionals during the pandemic and facilitate their coping with the impact of COVID-19 on the provision of palliative care.

scholarly journals SPIRITUAL PASIEN PALIATIF DI RUMAH SAKIT, YOGYAKARTA

2019 ◽  
Vol 7 (3) ◽  
pp. 265-271
Author(s):  
Milatul Afifah ◽  
Arianti Arianti
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Univariate Analysis ◽  
Sampling Technique ◽  
Mean Values ◽  
Palliative Patient ◽  
The Mean ◽  
Descriptive Survey ◽  
Palliative Patients

Background: Palliative care goal is to improve the quality of life of the patient. Spiritual is believed can improve the quality of life in palliative patients. Objective: The purpose of this research is to identify the spiritual status of palliative patients in PKU Muhammadiyah Gamping Yogyakarta Hospital. Methods: This study is a non-experiment research. It used descriptive survey research method with 100 subjects which used total sampling technique. FACIT-Sp is choosen based on this validity(r=0,5) dan realibity (r=0,768) to get the spiritual status of the sample. Results: The result of univariate analysis showed that the spiritual level of palliative patients in PKU Muhammadiyah Gamping Hospital with the mean values of 36,79 (0-48) and the spiritual component consisted of mean is 12,26 (0-16), faith is 12,85 (0-16) and peace 68 (0-16). Conclusion: The spiritual status of palliative patients at Muhammadiyah Gamping Yogyakarta Hospital in the categories of meaning, faith, peace and spiritual level most  have passed the cut of point, it showed that the palliative patient is headed to the good spiritual.   Keyword : Palliative care, spiritual, mean, faith, peace

Effects of a primary palliative care intervention on quality of life and mental health in cystic fibrosis

2019 ◽  
Vol 54 (7) ◽  
pp. 984-992 ◽  
Author(s):  
Deborah Friedman ◽  
Rachel W. Linnemann ◽  
Lily L. Altstein ◽  
Anna M. Georgiopoulos ◽  
Suhayla Islam ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Cystic Fibrosis ◽  
Palliative Care ◽  
Care Intervention

QUALITY OF LIFE OF PATIENTS RECEIVING HOME-BASED PALLIATIVE CARE FROM FAMILY PHYSICIANS AND MOBILE PALLIATIVE CARE TEAM

2020 ◽  
Vol 73 (8) ◽  
pp. 1681-1689
Author(s):  
Oryna Z. Detsyk ◽  
Oleksandra P. Bratsyun ◽  
Раvlo M. Babich
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Physicians ◽  
Palliative Care Team ◽  
Care Team ◽  
Life Questionnaire ◽  
Financial Difficulties ◽  
The Impact ◽  
Palliative Patients

The aim: To evaluate the quality of life (QoL) of palliative patients receiving general palliative care and the impact of palliative care provided by mobile palliative care team (MPCT) on their QoL. Materials and methods: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core30 (QLQ-C30) was used to evaluate QoL of 219 palliative patients receiving general palliative care from family physicians in the Center for primary health care of Uzhhorod city, Ukraine. In the second part of the study, the subgroup of 25 patients who had at least one of fifteen QLQ-C30 scales evaluated lower than 50 points were selected. They were provided with PC from the MPCT for 2 weeks and their QoL was measured again. Results: For the patients who received general palliative care from a family physicians mean m (SD) QoL value was 38.63 (16.9), and the main symptoms that affected QoL were fatigue 48.60 (23.30) and pain 46.11 (20.97). The most impact on QoL scores had role (rs=0,430;), emotional (0.321) and physical (0.301) functioning and such symptoms as pain (-0.392), insomnia (-0.311), dyspnoea (-0.294), financial difficulties (-0.255). For the patients who received palliative care from MPCT mean the mean QoL score increased by 30.0 points, mean pain score decreased by 42.22 points, fatigue score decreased by 38.0 points and level of financial difficulties also decreased by 76.0 points. Conclusions: The involvement of the MPCT could have a significant positive impact on the QoL of palliative patients.

Suitability of quality-of-life outcome measures in palliative care in the South African setting

2015 ◽  
Vol 14 (2) ◽  
pp. 118-128 ◽  
Author(s):  
Johanna E. Maree ◽  
Jacoba J.M. Jansen Van Rensburg
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
South African ◽  
Secondary Analysis ◽  
Chronic Illness Therapy ◽  
Quality Of Life Index ◽  
Open Coding ◽  
Multi Method Approach ◽  
Palliative Patients

AbstractObjective:Quality of life (QoL) is a multidimensional, subjective, and highly individual phenomenon. The current study speaks to the QoL domains identified by palliative patients living in Africa. The need to identify these domains has been recognized but seemed to still be lacking. This study filled this knowledge gap by providing the domains and by giving directions in terms of the assessment of QoL in palliative patients living in resource-restricted communities in South Africa.Method:We followed a multi-method approach and conducted a literature review to identify and describe the multidimensional QoL instruments used in African palliative care. A secondary analysis design and open-coding method was employed to identify the domains influencing the QoL of palliative patients living in a resource-restricted South African community, after which we compared these domains to the domains assessed by the identified QoL instruments.Results:We found that two multidimensional QoL of life instruments—the Missoula–Vitas Quality of Life Index (MVQoLI) and the Functional Assessments of Chronic Illness Therapy–Palliative Care (FACIT–Pal)—have been used in African palliative care and have identified various domains, grouped as four themes: physical concerns, psychosocial issues, financial restraints, and existential issues. The patient-identified QoL domains were to a great extent not assessed by the MVQoLI and FACIT–Pal.Significance of Results:Our study highlights the complexity of QoL and QoL assessment. A more accurate representation of the QoL of palliative patients living in resource-restricted communities might be obtained by using individualized measures or exploring what QoL means to these patients and selecting QoL instruments accordingly.

Parenteral nutrition complications in palliative medicine

2021 ◽  
pp. bmjspcare-2021-002991
Author(s):  
Zoe Smith ◽  
Emily Sills
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Parenteral Nutrition ◽  
Care Patient ◽  
Fluid Retention ◽  
First Case ◽  
Harmful Effects ◽  
Palliative Patients

Parenteral nutrition in palliative care is contentious, and decisions on starting or continuing its treatment in palliative patients centre on an individual’s preference, balanced with quality of life. This case report describes the unusual onset of pain and agitation secondary to fluid retention, in a patient with metastatic pseudomyxoma peritonei, established on 2.5 L/day of parenteral nutrition. Immediate volume reduction of the parenteral nutrition to 1 L/day successfully reversed the patient’s symptoms. To our knowledge, this is the first case of parenteral nutrition inducing pain and agitation in a palliative care patient. There is no specific internationally acclaimed guidance concerning parenteral nutrition content and volume in palliative patients, due to a lack of high quality studies. This case study highlights the need for further research into parenteral nutrition content and volume in palliative care, to prevent harmful effects from fluid retention, impacting on quality of life.

Qualifying Quality of Life in Mental Health

PsycCRITIQUES ◽  
2007 ◽  
Vol 52 (33) ◽  
Author(s):  
Itai Danovitch
Keyword(s):  
Quality Of Life ◽  
Mental Health
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