scholarly journals Palliative Care Patients’ Quality of Dying and Circumstances of Death—Comparison of Informal Caregivers’ and Health-Care Professionals’ Estimates

2018 ◽  
Vol 35 (7) ◽  
pp. 1023-1029 ◽  
Author(s):  
Stephanie Stiel ◽  
Maria Heckel ◽  
Kim Nikola Wendt ◽  
Martin Weber ◽  
Christoph Ostgathe

Background: Patient-reported outcomes are usually considered to be the gold standard assessment. However, for the assessment of quality of dying and death, ratings of informal caregivers (ICGs) or health-care professionals (HCPs) must be considered for ethical and methodological reasons. This article aims to present results of ICGs’ and HCPs’ estimates of the questionnaire, quality of dying and death (QoDD) on patients who died in PCUs and to compare the level of agreement of both ratings/raters. Methods: The parent validation study to this analysis assessed the ICG and HCP versions of the QoDD. Descriptive statistics are presented for each item in both versions. T tests for the estimation of differences between ICG and HCP were performed. Case-related absolute differences between estimates were analyzed regarding the extent of agreement and deviation. Results: Two hundred fifteen matched ICG and HCP ratings were analyzed. The ratings in all 6 QoDD dimensions were high; single items scored low. Mean absolute difference between both ratings was 0.33 (standard deviation [SD]: 3.08; median 0.05) on a 0 to 10 numerical rating scale and ranges between −8.24 (higher rating of ICGs compared to HCPs) and 9.33 (higher rating of HCPs compared to ICGs). Conclusions: The findings appear to show a high satisfaction with quality of dying and death as rated by ICGs and HCPs, but we suspect this might be indicative of a methodological challenge, that is, a ceiling effect in both assessments. Single low scoring items may provide important clues for improvement in end-of-life care. Although descriptive data show comparable mean values and standard deviations, the actual congruence of ratings is low. In summary, replacing one rating by another cannot be recommended.

2019 ◽  
Author(s):  
Miguel Ángel Amor-García ◽  
Roberto Collado-Borrell ◽  
Vicente Escudero-Vilaplana ◽  
Alejandra Melgarejo-Ortuño ◽  
Ana Herranz-Alonso ◽  
...  

BACKGROUND The large number of available cancer apps and their impact on the population necessitates a transparent, objective, and comprehensive evaluation by app experts, health care professionals, and users. To date, there have been no analyses or classifications of apps for patients with genitourinary cancers, which are among the most prevalent types of cancer. OBJECTIVE The objective of our study was to analyze the quality of apps for patients diagnosed with genitourinary cancers using the Mobile Application Rating Scale (MARS) and identify high-quality apps. METHODS We performed an observational cross-sectional descriptive study of all smartphone apps for patients diagnosed with genitourinary cancers available on iOS and Android platforms. In July 2019, we searched for all available apps for patients with genitourinary cancers (bladder, prostate, cervical, uterine, endometrial, kidney, testicular, and vulvar) or their caregivers. Apps were downloaded and evaluated, and the general characteristics were entered into a database. The evaluation was performed by 2 independent researchers using the MARS questionnaire, which rates 23 evaluation criteria clustered in 5 domains (Engagement, Functionality, Esthetics, Information, and Subjective Quality) on a scale from 1 to 5. RESULTS In total, 46 apps were analyzed. Of these, 31 (67%) were available on Android, 6 (13%) on iOS, and 9 (20%) on both platforms. The apps were free in 89% of cases (41/46), and 61% (28/46) had been updated in the previous year. The apps were intended for prostate cancer in 30% of cases (14/46) and cervical cancer in 17% (8/46). The apps were mainly informative (63%, 29/46), preventive (24%, 11/46), and diagnostic (13%, 6/46). Only 7/46 apps (15%) were developed by health care organizations. The mean MARS score for the overall quality of the 46 apps was 2.98 (SD 0.77), with a maximum of 4.63 and a minimum of 1.95. Functionality scores were quite similar for most of the apps, with the greatest differences in Engagement and Esthetics, which showed acceptable scores in one-third of the apps. The 5 apps with the highest MARS score were the following: “Bladder cancer manager,” “Kidney cancer manager,” “My prostate cancer manager,” “Target Ovarian Cancer Symptoms Diary,” and “My Cancer Coach.” We observed statistically significant differences in the MARS score between the operating systems and the developer types (<i>P</i>&lt;.001 and <i>P</i>=.01, respectively), but not for cost (<i>P</i>=.62). CONCLUSIONS MARS is a helpful methodology to decide which apps can be prescribed to patients and to identify which features should be addressed to improve these tools. Most of the apps designed for patients with genitourinary cancers only try to provide data about the disease, without coherent interactivity. The participation of health professionals in the development of these apps is low; nevertheless, we observed that both the participation of health professionals and regular updates were correlated with quality.


2021 ◽  
Vol 3 (1) ◽  
pp. e19-e28
Author(s):  
Nathan Hogaboom ◽  
Ella D'Amico ◽  
Ken Mautner ◽  
Christopher Rogers ◽  
Gerard Malanga

BackgroundTo evaluate changes in pain, function, and quality of life after treatment with injected micro-fragmented adipose tissue (MFAT) for knee osteoarthritis in a large cohort of individuals treated at multiple centers. MethodsOne hundred ten individuals were recruited from three private outpatient clinics. Participants had to be diagnosed with symptomatic knee OA (defined by persistent knee pain associated with clinical symptoms of OA and/ or classic imaging findings) and who had not received prior knee surgery or treatment with platelet-rich plasma, cortisone, or hyaluronic acid within the previous 6 weeks. Data from 120 knees were included in the analysis. Outcome measures included Knee Injury and Osteoarthritis Outcome Score (KOOS) subscales (pain, symptoms, activities of daily living [ADL], sports and recreation, quality of life [QOL]) and an 11-point Numerical Rating Scale (NRS) for average knee pain over the past week. Outcomes were collected at baseline and 3, 6, and 12 months. ResultsSignificant increases and decreases in KOOS subscale and NRS scores were observed, respectively, in the cohort as a whole (p< .05). Lower BMI was associated with more significant improvements in pain, sports/recreation, and ADL KOOS subscale scores (p< .05). Greater age was associated with more significant improvements in symptoms and QOL subscale scores (p< .05). ConclusionsA single injection of MFAT improved pain, function, and QOL outcome measures up to 12 months in this cohort for more than half of the participants. Greater BMI and lower age negatively influenced outcomes. It is not known whether improvements continue after this timeframe or why many participants reported little-to-no improvement.


Author(s):  
Chikako Matsumura ◽  
Nanako Koyama ◽  
Morito Sako ◽  
Hideo Kurosawa ◽  
Takehisa Nomura ◽  
...  

Background: Few studies evaluated whether health care professionals accurately assess several symptoms for patients with cancer in palliative care units. We determined the agreement level for several symptoms related to quality of life (QOL) between patient-reported QOL assessment and health care professional-assessed symptoms based on the Support Team Assessment Schedule (STAS). Method: An observational study was performed with terminally ill patients with cancer hospitalized in the palliative care unit between June 2018 and December 2019. Patients and health care professionals independently assessed 7 symptoms at the time of hospitalization and after 1 week. Patients completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C15-PAL). In examining the proportions of exact agreement, “exact agreement” referred to the pairs of the scores (QLQ-C15-PAL vs STAS) being (1 vs 0), (2 vs 1), (3 vs 2 or 3), or (4 vs 4). The relationships of physical functioning between QLQ-C15-PAL and Palliative Performance Scale (PPS) were examined. Results: Of 130 patients, approximately 60% had PPS scores from 40 to 60. The highest mean score on QLQ-C15-PAL was for fatigue (63.8). The exact agreement on symptoms between patients and health care professionals ranged from 15.4% (fatigue) to 57.7% (nausea and vomiting). The mean of the transformed QLQ-C15-PAL and proportions of exact agreement were negatively correlated ( R 2 = 0.949, P < .05). The physical function scores in QLQ-C15-PAL for each PPS group showed no differences. Conclusion: We expect patient-reported outcomes including QLQ-C15-PAL to be added to health care professionals’ assessment of serious symptoms such as fatigue in terminally ill patients with cancer.


2021 ◽  
pp. 082585972198952
Author(s):  
Janneke van Roij ◽  
Bibi de Zeeuw ◽  
Myrte Zijlstra ◽  
Niels Claessens ◽  
Natasja Raijmakers ◽  
...  

Objective: The aim of this study is to explore the essential aspects of health care according to patients with advanced cancer and their informal caregivers by using a dyadic approach. Methods: Seven focus groups and 7 in-depth semi-structured interviews were conducted. Patients with advanced cancer and informal caregivers were recruited between January 2017 and June 2017 in 6 Dutch hospitals. All interviews were audiotaped, transcribed verbatim, and open coded using a thematic analysis approach. For this analysis Atlas.ti was used. Results: There was congruence between the aspects mentioned by patients and their informal caregiver. Two essential aspects of quality of care arose: “relation” and “organization of care.” Regarding relation, patients and informal caregivers found it essential that health care professionals were personally engaged and provided support and compassion. Regarding organization of care, patients and informal caregivers expressed the importance of supportive care being offered multiple times during the disease trajectory, continuity of care, and well-organized logistics tailored to their needs. Conclusion: This study generates awareness among health care professionals that patients with advanced cancer and their relatives have similar perspectives on essential aspects of care and may increase anticipation to meet health care preferences to optimize care.


2017 ◽  
Vol 34 (04) ◽  
pp. 313-321 ◽  
Author(s):  
David Li ◽  
David Madoff

AbstractInterventional radiologists care for a large number of cancer patients with the breadth of palliative intent minimally invasive procedures that we provide. Understanding our meaningful impact on patients' quality of life is essential toward validating our role in the palliation of cancer patients. As such, it is critically important for interventional radiologists to understand common instruments used for the reporting of patient's quality of life measures. Common instruments used to measure pain and quality of life for cancer patients include the numerical rating scale, visual analog scale, brief pain inventory, the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and the Functional Assessment of Cancer Therapy. An ideal quality of life instrument should be a patient reported outcome measure across multiple domains (e.g., physical health, psychological, social), and be both validated and reliable.


2020 ◽  
Author(s):  
Jordi Miró ◽  
Pere Llorens-Vernet

BACKGROUND There is a huge number of health-related apps available, and the numbers are growing fast. However, many of them have been developed without any kind of quality control. In an attempt to contribute to the development of high-quality apps and enable existing apps to be assessed, several guides have been developed. OBJECTIVE The main aim of this study was to study the interrater reliability of a new guide — the Mobile App Development and Assessment Guide (MAG) — and compare it with one of the most used guides in the field, the Mobile App Rating Scale (MARS). Moreover, we also focused on whether the interrater reliability of the measures is consistent across multiple types of apps and stakeholders. METHODS In order to study the interrater reliability of the MAG and MARS, we evaluated the 4 most downloaded health apps for chronic health conditions in the medical category of IOS and Android devices (ie, App Store and Google Play). A group of 8 reviewers, representative of individuals that would be most knowledgeable and interested in the use and development of health-related apps and including different types of stakeholders such as clinical researchers, engineers, health care professionals, and end users as potential patients, independently evaluated the quality of the apps using the MAG and MARS. We calculated the Krippendorff alpha for every category in the 2 guides, for each type of reviewer and every app, separately and combined, to study the interrater reliability. RESULTS Only a few categories of the MAG and MARS demonstrated a high interrater reliability. Although the MAG was found to be superior, there was considerable variation in the scores between the different types of reviewers. The categories with the highest interrater reliability in MAG were “Security” (<i>α</i>=0.78) and “Privacy” (<i>α</i>=0.73). In addition, 2 other categories, “Usability” and “Safety,” were very close to compliance (health care professionals: <i>α</i>=0.62 and 0.61, respectively). The total interrater reliability of the MAG (ie, for all categories) was 0.45, whereas the total interrater reliability of the MARS was 0.29. CONCLUSIONS This study shows that some categories of MAG have significant interrater reliability. Importantly, the data show that the MAG scores are better than the ones provided by the MARS, which is the most commonly used guide in the area. However, there is great variability in the responses, which seems to be associated with subjective interpretation by the reviewers.


10.2196/26471 ◽  
2021 ◽  
Vol 9 (4) ◽  
pp. e26471
Author(s):  
Jordi Miró ◽  
Pere Llorens-Vernet

Background There is a huge number of health-related apps available, and the numbers are growing fast. However, many of them have been developed without any kind of quality control. In an attempt to contribute to the development of high-quality apps and enable existing apps to be assessed, several guides have been developed. Objective The main aim of this study was to study the interrater reliability of a new guide — the Mobile App Development and Assessment Guide (MAG) — and compare it with one of the most used guides in the field, the Mobile App Rating Scale (MARS). Moreover, we also focused on whether the interrater reliability of the measures is consistent across multiple types of apps and stakeholders. Methods In order to study the interrater reliability of the MAG and MARS, we evaluated the 4 most downloaded health apps for chronic health conditions in the medical category of IOS and Android devices (ie, App Store and Google Play). A group of 8 reviewers, representative of individuals that would be most knowledgeable and interested in the use and development of health-related apps and including different types of stakeholders such as clinical researchers, engineers, health care professionals, and end users as potential patients, independently evaluated the quality of the apps using the MAG and MARS. We calculated the Krippendorff alpha for every category in the 2 guides, for each type of reviewer and every app, separately and combined, to study the interrater reliability. Results Only a few categories of the MAG and MARS demonstrated a high interrater reliability. Although the MAG was found to be superior, there was considerable variation in the scores between the different types of reviewers. The categories with the highest interrater reliability in MAG were “Security” (α=0.78) and “Privacy” (α=0.73). In addition, 2 other categories, “Usability” and “Safety,” were very close to compliance (health care professionals: α=0.62 and 0.61, respectively). The total interrater reliability of the MAG (ie, for all categories) was 0.45, whereas the total interrater reliability of the MARS was 0.29. Conclusions This study shows that some categories of MAG have significant interrater reliability. Importantly, the data show that the MAG scores are better than the ones provided by the MARS, which is the most commonly used guide in the area. However, there is great variability in the responses, which seems to be associated with subjective interpretation by the reviewers.


10.2196/17609 ◽  
2020 ◽  
Vol 8 (7) ◽  
pp. e17609 ◽  
Author(s):  
Miguel Ángel Amor-García ◽  
Roberto Collado-Borrell ◽  
Vicente Escudero-Vilaplana ◽  
Alejandra Melgarejo-Ortuño ◽  
Ana Herranz-Alonso ◽  
...  

Background The large number of available cancer apps and their impact on the population necessitates a transparent, objective, and comprehensive evaluation by app experts, health care professionals, and users. To date, there have been no analyses or classifications of apps for patients with genitourinary cancers, which are among the most prevalent types of cancer. Objective The objective of our study was to analyze the quality of apps for patients diagnosed with genitourinary cancers using the Mobile Application Rating Scale (MARS) and identify high-quality apps. Methods We performed an observational cross-sectional descriptive study of all smartphone apps for patients diagnosed with genitourinary cancers available on iOS and Android platforms. In July 2019, we searched for all available apps for patients with genitourinary cancers (bladder, prostate, cervical, uterine, endometrial, kidney, testicular, and vulvar) or their caregivers. Apps were downloaded and evaluated, and the general characteristics were entered into a database. The evaluation was performed by 2 independent researchers using the MARS questionnaire, which rates 23 evaluation criteria clustered in 5 domains (Engagement, Functionality, Esthetics, Information, and Subjective Quality) on a scale from 1 to 5. Results In total, 46 apps were analyzed. Of these, 31 (67%) were available on Android, 6 (13%) on iOS, and 9 (20%) on both platforms. The apps were free in 89% of cases (41/46), and 61% (28/46) had been updated in the previous year. The apps were intended for prostate cancer in 30% of cases (14/46) and cervical cancer in 17% (8/46). The apps were mainly informative (63%, 29/46), preventive (24%, 11/46), and diagnostic (13%, 6/46). Only 7/46 apps (15%) were developed by health care organizations. The mean MARS score for the overall quality of the 46 apps was 2.98 (SD 0.77), with a maximum of 4.63 and a minimum of 1.95. Functionality scores were quite similar for most of the apps, with the greatest differences in Engagement and Esthetics, which showed acceptable scores in one-third of the apps. The 5 apps with the highest MARS score were the following: “Bladder cancer manager,” “Kidney cancer manager,” “My prostate cancer manager,” “Target Ovarian Cancer Symptoms Diary,” and “My Cancer Coach.” We observed statistically significant differences in the MARS score between the operating systems and the developer types (P<.001 and P=.01, respectively), but not for cost (P=.62). Conclusions MARS is a helpful methodology to decide which apps can be prescribed to patients and to identify which features should be addressed to improve these tools. Most of the apps designed for patients with genitourinary cancers only try to provide data about the disease, without coherent interactivity. The participation of health professionals in the development of these apps is low; nevertheless, we observed that both the participation of health professionals and regular updates were correlated with quality.


2021 ◽  
pp. 00120-2021
Author(s):  
Brenda M. Button ◽  
Lisa M. Wilson ◽  
Angela T. Burge ◽  
Lara Kimmel ◽  
Felicity Finlayson ◽  
...  

BackgroundQuality of life has improved dramatically over the past two decades in people with cystic fibrosis (CF). Quantification has been enabled by patient reported outcome measures (PROMs), however many are lengthy and can be challenging to use in routine clinical practice. We propose a short-form PROM that correlates well with established quality of life measures.MethodsWe evaluated the utility of a ten-item score (AWESCORE) by measuring reliability, validity and responsiveness in adults with CF. The questions were developed by thematic analysis of survey questions to patients in a single adult CF centre. Each question was scored using a numerical rating scale zero to 10. Total scores ranged from 0 to 100. Test-retest reliability was assessed over 24 h. To determine validity, comparisons were sought between stable subjects and those in pulmonary exacerbation, and between AWESCORE and CFQ-R. Responsiveness to pulmonary exacerbation in individual subjects was evaluated.ResultsFive domains, each with two questions, were identified for respiratory, physical, nutritional, psychological and general health. A total of 246 consecutive adults attending the Outpatient Clinic completed the AWESCORE. Scores were higher during clinical stability compared to pulmonary exacerbation (mean 73 [sd 11]) versus 48 [11], p<0.001). Each domain scored worse during an acute exacerbation (p<0.001). No differences in reliability were observed in scores on retesting using Bland-Altman comparison. The CFQ-R scores (mean 813 [sd125]) and AWESCORE (81 [13]) were moderately correlated (Pearson's r=0.649; p=0.002).ConclusionsThe AWESCORE is valid, reliable and responsive to altered health status in cystic fibrosis.


2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1683.2-1684
Author(s):  
C. García-Porrúa ◽  
L. Fernández-Dominguez ◽  
J. L. Guerra-Vazquez ◽  
J. A. Mosquera Martínez ◽  
J. Pinto-Tasende

Background:Psoriatic arthritis (PsA) has a prevalence of 0.17% in North-Western of Spain and patients suffer this disease have significant impact on daily life due to articular, dermatological and psychological symptoms. DAPSA VLDA/LDA (≤14) is a therapeutic goal recommended by EULAR for clinical practice.Objectives:Our aim was to assess the relationship between DAPSA index and PsAID questionnaire in routine clinical practice.Methods:We performed a cross-sectional study of patient and physician reported outcomes. We obtained clinical information of patients with PsA attending clinic from October 2018 to October 2019. Data were collected from clinical records concerning age, gender, disease duration, joint counts, dactylitis, enthesitis, body surface area (BSA) of psoriasis, laboratory results (ESR and CRP), HAQ, PsAID12, pain and global assessment from patient with numerical rating scale (NRS) and DAPSA index. Data were analysed using SPSS21. Logistic regression was used to assess patient reported outcomes which were associated with DAPSA VLDA/LDA.Results:Data were available for 210 patient visits, 43% females. DAPSA≤14 was in 143 patients (68.1%) and was associated with higher disease duration, OR 1.079 (1.020-1.142, 95% CI), p 0.008. DAPSA index was not associated with BSA (r 0.126, p 0.176).PsAID12 was evaluated in 156 patients and we saw that patients with DAPSA≤14 had significantly lower PsAID12 (mean 1.7 ± SD 1.7 vs. 3.9 ± 2.1), p< 0.0001. PsAID12 of less than 4 is considered a good outcome and all items of PsAID12 (Figure 1, mean values for NRS) were less than 4 in patients with DAPSA≤14. All components of PsAID12 except item 3 (skin problems) were associated with DAPSA≤14 on univariate analysis but only pain remained independent predictor on multiple regression analysis (p< 0.0001).Conclusion:In these PsA patients, DAPSA VLDA/LDA was associated with higher disease duration and with lower PsAID12. Pain is dominant symptom in patients with psoriatic arthritis, even in those with DAPSA≤14, and skin problems are not good represented in DAPSA index.References:[1]Gossec L, Ann Rheum Dis. 2014;73(6):1012–1019.[2]Di Carlo, et al: PsAID-12 in clinical setting. J Rheum 2017; 44:3Acknowledgments:SOGAREDisclosure of Interests:Carlos García-Porrúa: None declared, Luis Fernández-Dominguez: None declared, Jose L. Guerra-Vazquez: None declared, José Antonio Mosquera Martínez: None declared, Jose Pinto-Tasende Consultant of: Janssen, Novartis, Speakers bureau: Lilly, Janssen, Novartis, BMS, Pfizer, Celgene


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