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.

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.

scholarly journals Die identifisering van ’n geskikte vraelys vir die bepaling van lewenskwaliteit by Suid-Afrikaanse vroue met servikskanker

2015 ◽  
Vol 34 (1) ◽  
Author(s):  
George Du Toit
Keyword(s):  
Quality Of Life ◽  
Cervical Cancer ◽  
South African ◽  
Objective Assessment ◽  
Disease Process ◽  
Hiv And Aids ◽  
African Women ◽  
Chronic Illness Therapy ◽  
South African Women

Cervical cancer is one of the commonest cancers among South African women. In the absence of an adequate, preventative cervical cytology programme, the majority of women present with an advanced stage of disease. Despite treatment, the prognosis for these women is poor. Furthermore, HIV and AIDS impacts adversely on the treatment of cervical cancer, whereas cervical cancer and its treatment again affect the quality of life. Objective assessment of the quality of life can improve treatment and supportive care. The current study was done to identify the most appropriate questionnaire to assess the quality of life experienced by South African women with cervical cancer. The European Organisation for the Research and Treatment of Cancer (EORTC) and the Functional Assessment of Chronic Illness Therapy Measurement System (FACIT) questionnaires are the most commonly used for assessment of the quality of life patients with cancer have. The current study assessed the appropriateness of these questionnaires for use in South Africa on the following criteria: study structure (prospective or transverse), quality of life endpoint (primary or secondary), timing of assessment during disease process and the nationalities of the study populations. The EORTC questionnaire was identified as the most appropriate for application to South African women with cervical cancer.

scholarly journals Quality of Life of Patients with Advanced Cancer in Palliative Therapy and in Palliative Care

Aquichan ◽  
2019 ◽  
Vol 19 (3) ◽  
pp. 1-14
Author(s):  
Leonel dos Santos Silva ◽  
Bruna Eloise Lenhani ◽  
Dabna Hellen Tomim ◽  
Paulo Ricardo Bittencourt Guimarães ◽  
Luciana Puchalski Kalinke
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Palliative Therapy ◽  
Symptom Assessment ◽  
Assessment System ◽  
Life Questionnaire ◽  
Edmonton Symptom Assessment System ◽  
Quality Of Life Questionnaire ◽  
Chronic Illness Therapy

Objective: To assess the quality of life of patients with advanced cancer in palliative therapy and in palliative care. Materials and Methods: Quantitative, observational, cross-sectional, and analytic study conducted in a teaching hospital in Paraná, Brazil, from January to June 2018, with 126 patients: 107 in palliative therapy; 19 in exclusive palliative care. The questionnaires for data collection were: Quality of Life Questionnaire-Core 15-Palliative, Functional Assessment of Chronic Illness Therapy-Palliative Care 14, and Edmonton Symptom Assessment System. The Spearman non-parametric coefficient test was used for the analysis. Results: The overall quality of life in palliative therapy and in palliative care was, respectively, 71.54/59.65; when correlating the total score of quality of life of the Quality of Life Questionnaire-Core 15-Palliative with the Functional Assessment of Chronic Illness Therapy-Palliative Care 14 (p = 0.001), and the Edmonton Symptom Assessment System (p = 0.001), significant difference of better quality of life was observed in the palliative therapy. Conclusion: Patients in palliative therapy have good overall quality of life, while the palliative care group reports regular quality of life. The symptoms were milder in the palliative therapy and more intense and with greater significance in palliative care; hence, knowing the compromise of quality of life will help professionals in planning interventions with transdisciplinary approach for patients and for their families.

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

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 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

Sign in / Sign up

Export Citation Format

Share Document