Development of a tool to identify and assess psychosocial and spiritual needs in end-of-life patients: The ENP-E scale

2018 ◽  
Vol 17 (04) ◽  
pp. 441-447
Author(s):  
Dolors Mateo-Ortega ◽  
Joaquín T. Limonero ◽  
Jorge Maté-Méndez ◽  
Elba Beas ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Depression Scale ◽  
Well Being ◽  
Face Validity ◽  
Spiritual Needs ◽  
Life Questionnaire ◽  
Psychosocial Needs ◽  
Emotional Wellbeing ◽  
European Organization

AbstractObjectiveThe goal of this study is to describe the development of a new tool, the Psychosocial and Spiritual Needs Evaluation scale Instrumento de Evaluación de Necesidades Psicosociales y Espirituales del Enfermo al Final de Vida (ENP-E), designed to assess the psychosocial needs of end-of-life (EOL) patients. And, secondarily, to describe the face validity and psychometric properties of this instrument in the Spanish-speaking context.MethodThe scale was developed through a seven-stage process: (1) literature review; (2) expert panel establishment; (3) discussion and agreement on the most relevant dimensions of psychosocial care; (4) description of key indicators and consensus-based questions to evaluate such dimensions; (5) assessment of the scale by external palliative care (PC) professionals; (6) evaluation by patients; and (7) analysis of scale's psychometrics properties. To assess content validity, 30 PC professionals and 20 patients evaluated the questionnaire. To determine psychometric properties, 150 participants completed these scales: the ENP-E; the Hospital Anxiety and Depression Scale; item 15 from the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative; and the Distress Thermometer.ResultAll respondents evaluated the tool as “excellent.” In terms of construct validity, the internal consistency (Cronbach's alpha = 0.74) and temporal stability (test-retest r = 0.74, p < 0.1) were both adequate. On the factorial analysis, four factors (emotional-wellbeing, social support, spiritual, and information) explained 58.4% of the variance. This scale has a sensitivity of 76.3%, specificity of 78.9%, and the cutoff is 28.Significance of resultsTo provide quality PC to EOL patients, it is essential to determine the psychosocial factors that influence well-being. This requires the use of reliable and specific instruments. The ENP-E is a novel tool that provides a systematic, holistic assessment of the psychosocial needs of EOL patients. Its routine use would allow clinicians to monitor such needs over time. This would, in turn, permit comprehensive, highly individualized interventions to improve effective PC approach.

scholarly journals German translation, cultural adaption and validation of the unidimensional self-efficacy scale for multiple sclerosis: a study protocol

BMJ Open ◽  
2019 ◽  
Vol 9 (8) ◽  
pp. e029565
Author(s):  
Barbara Seebacher ◽  
Roger J Mills ◽  
Markus Reindl ◽  
Laura Zamarian ◽  
Raija Kuisma ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Self Efficacy ◽  
Qualitative Content Analysis ◽  
Depression Scale ◽  
Face Validity ◽  
Expert Committee ◽  
Life Questionnaire ◽  
Index Test ◽  
Link Type ◽  
Cultural Adaption

IntroductionSelf-efficacy refers to individuals’ confidence in their ability to perform relevant tasks to accomplish desired goals. This is independent of their actual abilities. In people with multiple sclerosis (MS), self-efficacy has been shown to powerfully influence motivation and health-related behaviour, such as adherence to prescribed treatment or physical activity. So far, a rigorously tested German language self-efficacy questionnaire for people with MS is missing.MethodsThe purpose of this study is to translate the original Unidimensional Self-Efficacy Scale for Multiple Sclerosis (USE-MS) into German and to validate the German USE-MS (USE-MS-G). Based on Bandura’s concept of self-efficacy and international guidelines for questionnaire development, the patient-led development of the pre-final German version will involve a forward–backward translation process, synthesis of translations, expert committee review and consensus with the original test developers. At two centres in Tyrol, Austria, content and face validity and cultural adaption for Austria will be established using face-to-face semistructured cognitive interviews of 30 people with MS (PwMS). A further 292 PwMS with minimal to severe disability will be tested at two timepoints to validate the USE-MS-G.ResultsMixed methods analyses will be applied. Interviews will be transcribed and analysed employing qualitative content analysis. External validity will be explored using Spearman’s Rank correlation coefficients of the USE-MS-G with the 13-item Resilience Scale, General Self-Efficacy Scale, Multiple Sclerosis International Quality of Life questionnaire, Hospital Anxiety and Depression Scale and MS-specific Neurological Fatigue Index. Test–retest reliability, internal consistency and floor and ceiling effects will be evaluated. Internal validity will be examined using Rasch analysis.Ethics and disseminationEthical approval was received from the Ethics Committee of the Medical University of Innsbruck, Austria (reference number EK1260/2018; 13.12.2018). Results from this study will be disseminated to the participants and MS Societies, and to clinicians and researchers through peer-reviewed publications and conferences.Study registrationISRCTN Registry; trial ID ISRCTN14843579; prospectively registered on 02. 01. 2019; http://www.isrctn.com/ISRCTN14843579

Psychometric properties of the EORTC Quality of Life Questionnaire in inpatient cancer rehabilitation in Germany

2004 ◽  
Vol 2 (2) ◽  
pp. 115-124 ◽  
Author(s):  
JÖRG DIRMAIER ◽  
SILKE ZAUN ◽  
UWE KOCH ◽  
TIMO HARFST ◽  
HOLGER SCHULZ
Keyword(s):  
Quality Of Life ◽  
Psychometric Properties ◽  
Cancer Patients ◽  
Scale Structure ◽  
Cancer Rehabilitation ◽  
Life Questionnaire ◽  
European Organization ◽  
Eortc Qlq C30 ◽  
Eortc Qlq

Objective: Recent years have shown an increase in the use of questionnaires measuring health-related quality of life to verify the quality of treatment in the field of oncology. An often used cancer-specific questionnaire is the “Quality of Life Core Questionnaire of the European Organization for the Research and Treatment of Cancer” (EORTC QLQ-C30). The purpose of this study is to analyze the psychometric properties of the EORTC QLQ-C30 (version 1) in order to determine the feasibility and appropriateness for its use in inpatient cancer rehabilitation in Germany with heterogeneous diagnoses.Methods: The questionnaire was administrated to a sample of 972 cancer patients at the beginning of treatment and to 892 patients after treatment. Besides descriptive analysis, the statistical analyses include confirmatory analysis and the multitrait/multimethod approach to test the questionnaire's postulated scale structure (factorial validity) and its reliability (internal consistencies). The analysis also includes a comparison of responsiveness indices (effect size, reliable change index) to test the sensitivity of the instrument.Results: The EORTC QLQ-C30 showed satisfactory levels of reliability and sensitivity, but the postulated scale structure could not be confirmed. The results illustrate that the varimax-rotated solution of a principal component analysis does not confirm the scale structure postulated by the authors. Correspondingly, the selected fit indices within the scope of the confirmatory factor analysis do not show satisfactory results either.Significance of results: We therefore consider version 1 of the EORTC QLQ-C30 to be only limitedly useful for the routine assessment of changes in the quality of life of cancer patients in inpatient rehabilitation in Germany, especially because of the instrument's length and possible redundancies. For this reason, a scoring procedure limited to a subset of items is suggested, revealing satisfactory to good psychometric indices. However, further psychometric tests are necessary, especially with regard to validity and sensitivity.

The orientation to life questionnaire: Assessing older adults’ sense of coherence

2016 ◽  
Vol 33 (S1) ◽  
pp. s289-s289
Author(s):  
S. von Humboldt ◽  
I. Leal
Keyword(s):  
Older Adults ◽  
Psychometric Properties ◽  
Sense Of Coherence ◽  
Discriminant Validity ◽  
Well Being ◽  
Community Dwelling ◽  
Care Practice ◽  
Life Questionnaire ◽  
Distributional Properties ◽  
Cross National

IntroductionGrowing literature suggests that the sense of coherence (SOC) positively influences well-being in later life.ObjectivesThis study reports the assessment the following psychometric properties: distributional properties, construct, criterion and external-related validities, and reliability, of the Orientation to Life Questionnaire (OtLQ) in an cross-national population of older adults.MethodsWe recruited 1291 community-dwelling older adults aged between 75–102 years (M = 83.9; SD = 6.68). Convenience sampling was used to gather questionnaire data. The construct validity was asserted by confirmatory factor analysis, convergent and discriminant validity. Moreover, criterion and external-related validities, as well as distributional properties and reliability were also tested.ResultsData gathered with the 29-items OtLQ scale showed overall good psychometric properties, in terms of distributional properties, construct, criterion and external-related validities, as well as reliability. Three factors were validated for the OtLQ scale: (a) comprehensibility; (b) manageability; and (c) meaningfulness.ConclusionWe validated the 3-factor OtLQ scale, which produced valid and reliable data for a cross-national sample with older adults. Hence, it is an adequate instrument for assessing sense of coherence among older people in health care practice and program development contexts.Disclosure of interestThe authors have not supplied their declaration of competing interest.

scholarly journals Spiritual Diversity, Spiritual Assessment, and Māori End-of-Life Perspectives: Attaining Ka Ea

Religions ◽  
2020 ◽  
Vol 11 (10) ◽  
pp. 536
Author(s):  
Holly Nelson-Becker ◽  
Tess Moeke-Maxwell
Keyword(s):  
End Of Life ◽  
Rapid Assessment ◽  
Well Being ◽  
Spiritual Needs ◽  
Assessment Instruments ◽  
Spiritual Values ◽  
Spiritual Assessment ◽  
Contemporary World ◽  
Spiritual Diversity ◽  
Sense Of Satisfaction

The contemporary world is endowed with increasingly diverse spiritual and cultural perspectives, yet little is known about the spiritual concerns and spiritual resilience of Māori from Aotearoa New Zealand at the end of life. A context is provided for the value of spiritual assessment and identification of spiritual needs or concerns. Spiritual concerns and the desire to attain a state of ka ea (fulfillment, gratitude, or peace) may point to interventions, helping activities, or referrals that guide treatment. We reflect on qualitative findings from the 2017–2020 Pae Herenga study of 61 caregiving families, their helping professionals, and religious/spiritual leaders. We explore essential spiritual values and practices that support kaumātua (older tribal people) who have a life-limiting illness in achieving a sense of satisfaction and fulfilment at the end of life. Three themes emerged: the relational is spiritual, the need to live into the future, and value of spiritual end-of-life care. While some scholars have lamented the lack of culturally appropriate rapid assessment instruments, we suggest that a more open-ended assessment guide is better suited to understand key elements of spiritual diversity and spiritual concerns, particularly the spiritual strengths and resources that lead to well-being and even thriving at life’s end. Finally, learning about spiritual diversity can assist others to reconnect to lost meanings and regain a more holistic and centred view of life.

scholarly journals Psychological well-being, marital adjustment and quality of life after hysterectomy: a comparative study

2018 ◽  
Vol 7 (12) ◽  
pp. 4960
Author(s):  
Kusum Lata Mathur ◽  
Manu Sharma ◽  
Mohua Mazumdar ◽  
Shikha Talati ◽  
Siddharth Srivastav
Keyword(s):  
Quality Of Life ◽  
Marital Adjustment ◽  
Comparison Group ◽  
Psychiatric Morbidity ◽  
Depression Scale ◽  
Well Being ◽  
Study Groups ◽  
Life Questionnaire ◽  
Gynecological Surgery

Background: Hysterectomy is the most common major gynecological surgery often performed for benign lesions. Many studies have reported adverse psychosocial outcomes post-hysterectomy. There is a paucity of studies from India addressing psychiatric morbidity after hysterectomy. To evaluate psychological wellbeing, marital adjustment and quality of life in patients undergoing hysterectomy for non-malignant conditions, in comparison with patients undergoing surgery other than hysterectomy.Methods: A cross-sectional study was conducted on 100 consecutive out-patients who underwent hysterectomy for non-malignant indications at least 6 months ago. The comparison group comprised of 50 consecutive out-patients who underwent gynecological surgery other than hysterectomy at least 6 months ago formed the comparison group. The study participants were evaluated on Hospital Anxiety and Depression Scale (HADS), Psychological General Well-being Index (PGWBI), Marital Adjustment Test (MAT) and Women’s Quality of Life Questionnaire (WOMQOL).Results: The indications for hysterectomy were: uterine leiomyoma (69%), uterovaginal prolapse (18%), dysfunctional uterine bleeding (12%), and endometriosis (1%). Abdominal hysterectomy was performed in 92 patients while 8 patients underwent vaginal hysterectomy. There were no significant differences in the study groups on scores of HADS, PGWBI, MAT and WOMQOL (p>0.05). Both the study groups had good marital adjustment and majority reported no depression and anxiety.Conclusions: There is no major psychiatric morbidity, decline in marital adjustment and quality of life after hysterectomy for benign conditions among Indian women. Future research on the ethno-cultural implications and effect of hysterectomy on mental health will be a significant addition to the available evidence in India.

Subjective and Objective Prospective, Long-Term Analysis of Quality of Life During Inhaled Interleukin-2 Immunotherapy

1999 ◽  
Vol 17 (11) ◽  
pp. 3612-3620 ◽  
Author(s):  
Hans Heinzer ◽  
Thomas S. Mir ◽  
Edith Huland ◽  
Hartwig Huland
Keyword(s):  
Quality Of Life ◽  
Interleukin 2 ◽  
Well Being ◽  
High Dose ◽  
Life Questionnaire ◽  
European Organization ◽  
Life Score ◽  
Life Years ◽  
Life Analysis

PURPOSE: We conducted both a subjective and objective, prospective quality-of-life analysis during high-dose (36 × 106 immunizing units/d) inhalational interleukin (IL)-2 treatment (mean treatment time, 13.4 months) of 15 patients with metastatic renal cell carcinoma (mRCC). Additionally, quality of life for 10 patients with mRCC receiving low-dose (9 × 106 IU/m2/d for 5 days) intravenous IL-2 treatment also was evaluated. PATIENTS AND METHODS: Patients responded to the European Organization for Research and Treatment of Cancer quality-of-life questionnaire QLQ-C30 before and during inhalational IL-2 treatment at 1, 3, 6, 9, and 12 months and before and once during intravenous IL-2 treatment. A clinician assessed patient well-being using the Quality of Well-Being scale to calculate once weekly quality-adjusted life-years (QALYs) during inhalational IL-2 treatment. RESULTS: Patients completed 103 questionnaires and clinicians performed 892 QALY calculations. For patients treated with inhalational IL-2, the mean quality-of-life score deteriorated modestly but significantly 1 month after treatment initiation (15.1%, P = .01) but did not differ significantly from pretreatment scores after 3, 6, 9, and 12 months of treatment. Inhalational IL-2 therapy stabilized patient quality of life for a mean of 13.4 months. The resulting QALY calculation for patients on inhalation IL-2 was 70.1% of 13.4 months, representing 9.4 months of QALY. In comparison, patients who received intravenous IL-2 showed a more marked, statistically significant deterioration in mean quality-of-life score during treatment (27%, P = .006); moreover, three of these 10 patients experienced treatment-related toxicity that prevented questionnaire completion. CONCLUSION: Quality-of-life analysis during immunotherapy provides valuable information regarding cancer treatment outcomes.

Predictors of Change in Quality of Life in Patients With End-Stage Disease During Hospitalization

2017 ◽  
Vol 32 (2) ◽  
pp. 69-76
Author(s):  
Radka Bužgová ◽  
Lucie Sikorová ◽  
Radka Kozáková ◽  
Darja Jarošová
Keyword(s):  
Quality Of Life ◽  
Functional Status ◽  
Karnofsky Performance Status ◽  
Depression Scale ◽  
Life Questionnaire ◽  
European Organization ◽  
Stage Disease ◽  
End Stage ◽  
Predictors Of Change

Background: Currently, there are no studies aimed at evaluating the quality of life (QoL) of patients with end-stage disease during hospitalization and the factors that influence it. Aim: The aim of the research was to identify predictors of change in the QoL of patients hospitalized due to advanced stage of disease. Methods: The sample consisted of 140 patients with end-stage disease who were hospitalized on this account. For evaluation of QoL, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) was used. The Hospital Anxiety and Depression Scale and Karnofsky Performance Status questionnaires were used for the assessment of mental and functional status. For the evaluation of predictors of negative change in QoL, a logistic regression analysis was used. Results: During hospitalization, there was a significant deterioration in the scores given for all domains of the functional QLQ-C30 scale, but not the symptomatic scale. Predictors of change in overall QoL detected were marital status, improved functional status, and depression detected on admission to hospital. Gender and age were found to be protective factors against deterioration in overall QoL. Conclusion: Sociodemographic characteristics and mental and functional status may be associated with change in QoL of patients with end-stage disease during hospitalization.

scholarly journals Quality of life among Ethiopian cancer patients

2020 ◽  
Vol 28 (11) ◽  
pp. 5469-5478
Author(s):  
Yemataw Wondie ◽  
Andreas Hinz
Keyword(s):  
Quality Of Life ◽  
Cancer Patients ◽  
Depression Scale ◽  
Developed Countries ◽  
Anxiety And Depression ◽  
Life Questionnaire ◽  
European Organization ◽  
Eortc Qlq C30 ◽  
Eortc Qlq

Abstract Purpose Cancer is of increasing prevalence in less-developed countries. However, research on the patients’ quality of life (QoL) in these countries is very limited. The aim of this study was to examine QoL of cancer patients in Africa. Method A sample of 256 cancer patients treated in an Ethiopian hospital was examined with the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire EORTC QLQ-C30, the Multidimensional Fatigue Inventory, and the Hospital Anxiety and Depression Scale. A group of 1664 German cancer patients served as a comparison group. Results Most of the scales of the EORTC QLQ-C30 showed acceptable reliability in the Ethiopian sample. Compared with the German cancer patients, the Ethiopian patients showed lower QoL in most dimensions, especially in financial difficulties, physical functioning, pain, and appetite loss (effect sizes between 0.52 and 0.75). Illiteracy, tumor stage, and treatment (surgery and chemotherapy) were associated with QoL in the Ethiopian sample. QoL was strongly correlated with fatigue, anxiety, and depression. Conclusion The EORTC QLQ-C30 is a suitable instrument for measuring QoL in Ethiopia. The detriments in QoL in the Ethiopian patients indicate specific cancer care needs for the patients in a developing country.

Psychological well-being of older Chinese immigrants living in Australia: a comparison with older Caucasians

2016 ◽  
Vol 28 (10) ◽  
pp. 1671-1679 ◽  
Author(s):  
Xiaoping Lin ◽  
Christina Bryant ◽  
Jennifer Boldero ◽  
Briony Dow
Keyword(s):  
Quality Of Life ◽  
Depression Scale ◽  
Chinese Immigrants ◽  
Well Being ◽  
Community Dwelling ◽  
Life Questionnaire ◽  
Psychological Well Being ◽  
Older Chinese ◽  
The Impact

ABSTRACTBackground:Few current studies explore psychological well-being among older Chinese immigrants in Australia. The study addressed this gap and provided preliminary data on psychological well-being among this group. Four indicators, namely depression, anxiety, loneliness, and quality of life, were used to present a comprehensive picture of psychological well-being.Methods:Participants were two groups of community-dwelling older people, specifically 59 Chinese immigrants and 60 Australian-born people (median age=77 and 73, respectively). Data were collected through standardized interviews. The Geriatric Depression Scale, the Hospital Anxiety and Depression Scale, the de Jong Gierveld Loneliness Scale and the WHO Quality of Life questionnaire were used to measure depression, anxiety, loneliness, and quality of life, respectively.Results:Chinese participants’ median quality of life score was higher than the scale mid-point, indicating relatively high levels of quality of life. However, 10% exhibited symptoms of depression, 6% had symptoms of anxiety, and 49% felt lonely. Compared to Australian participants, Chinese participants reported poorer quality of life and higher levels of loneliness. Importantly, the difference in quality of life remained when the impact of socio-demographic factors was controlled for.Conclusions:This study was the first to use multiple indicators to explore psychological well-being among older Chinese immigrants in Australia. Its results suggest that their psychological well-being might be worse than that of Australian-born people when using loneliness and quality of life as indicators. In particular, loneliness is a common psychological problem among this group, and there is a need for public awareness of this problem.

scholarly journals Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study

2020 ◽  
Author(s):  
Kristina Holmegaard Nørskov ◽  
Dorthe Overgaard ◽  
Jannie Boesen ◽  
Anne Struer ◽  
Sarah Elke Weber Due El-Azem ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Acute Leukemia ◽  
Feasibility Study ◽  
Clinical Care ◽  
Depression Scale ◽  
Anxiety And Depression ◽  
Life Questionnaire ◽  
Newly Diagnosed ◽  
European Organization

Abstract Purpose This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. Methods A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy–Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. Results Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. Conclusion The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. Trial registration NCT03493906

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