Health-Related Quality of Life in Adrenocortical Carcinoma:Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry

SIMPLE SUMMARY: Patients with the rare cancer adrenocortical carcinoma are exposed to many symptoms and treatment side-effects. Research on how this can affect their health-related quality of life (HRQoL) is limited, however. This article includes the first assessment of HRQoL in a population-based cohort of patients with adrenocortical carcinoma with the European Organization for Research and Treatment of Cancer QLQ-C30 questionnaire and the newly developed disease-specific additional questionnaire ACC-QOL. The ACC-QOL has good psychometric properties in terms of validity, reliability, and responsiveness. Patients diagnosed more than 5 years ago reported a relatively good HRQoL compared with the Dutch reference population, but experienced residual fatigue and emotional problems. Patients after additional surgery reported a slightly lower HRQoL due to physical limitations. Patients who had recently received mitotane or chemotherapy reported a worse HRQoL and problems in many domains. This knowledge and the new disease-specific questionnaire can aid future research, side-effect monitoring, treatment guidance, and shared decision making. ABSTRACT: We aimed to develop a disease-specific adrenocortical carcinoma (ACC) health-related quality of life (HRQoL) questionnaire (ACC-QOL) and assess HRQoL in a population-based cohort of patients with ACC. Development was in line with European Organization for Research and Treatment of Cancer (EORTC) guidelines, though not an EORTC product. In phase I and II, we identified 90 potential HRQoL issues using literature and focus groups, which were reduced to 39 by healthcare professionals. Pilot testing resulted in 28 questions, to be used alongside the EORTC QLQ-C30. In Phase III, 100 patients with ACC were asked to complete the questionnaires twice in the PROFILES registry (3-month interval, respondents: first 67, second 51). Confirmatory factor analysis demonstrated the structural validity of 26 questions with their scale structure (mitotane side-effects, hypercortisolism/hydrocortisone effects, emotional effects). Internal consistency and reliability were good (Cronbach’s alpha 0.897, Interclass correlation coefficient 0.860). Responsiveness analysis showed good discriminative ability (AUC 0.788). Patients diagnosed more than 5 years ago reported a good HRQoL compared with the Dutch reference population, but experienced residual fatigue and emotional problems. Patients who underwent recent treatment reported a lower HRQoL and problems in several domains. In conclusion, we developed an ACC-specific HRQoL questionnaire with good psychometric properties

Patient and Partner Perspectives on Health-Related Quality of Life in Adrenocortical Carcinoma

Little is known about the impact of adrenocortical carcinoma (ACC) on health-related quality of life (HRQoL), and no disease-specific questionnaire exists. This qualitative study aimed to identify relevant domains of HRQoL for patients with ACC. In 2 focus group interviews, we discussed concerns regarding living with ACC and its treatments. The first group consisted of 6 patients on mitotane therapy and their partners or relatives, the second group of 4 patients after surgery alone and their partners. Inductive qualitative content analysis was used to analyze the interviews. We identified 4 domains related to HRQoL in patients with ACC, namely physical complaints, mental consequences, social consequences, and functional limitations. For example, physical complaints included symptoms of the disease and side effects of mitotane therapy; mental consequences included feeling insecure and living from scan to scan; and functional limitations included daily activities and mobility. We further found that patients' experiences with the health care system and health care professionals and partner perspectives influence HRQoL. In conclusion, ACC has a large impact on HRQoL in 4 domains. These results can be used to improve communication about HRQoL issues. We will use our findings to generate a disease-specific questionnaire to measure HRQoL in patients with ACC. (C) Endocrine Society 2020

Evaluating quality in acute care using patient reported outcome measures: A scoping review

The aim of this scoping review is to identify patient reported outcome measures (PROMs) in acute care settings, assess their psychometric properties and provide recommendations for their use in daily practice. We performed a search in the PubMed database to identify publications concerning PROMs in an acute care setting. The COSMIN checklist was used to assess the psychometric properties of the reported PROMs. We found 1407 publications and included 14 articles, describing 15 measures. Most publications provided limited information on psychometric properties. Three generic PROMs were deemed of adequate quality for use in acute care. We recommend future development and evaluation of PROMs focussing on acute care to further evaluate and improve the quality of acute care

Patient's perspective on improving the quality of acute medical care:determining patient reported outcomes

Rationale: There is an increasing societal demand for quality assurance and transparency of medical care. The American National Academy of Medicine has determined patient centredness as a quality domain for improvement of healthcare. While many of the current quality indicators are disease specific, most emergency department (ED) patients present with undifferentiated complaints. Therefore, there is a need for generic outcome measures. Our objective was to determine relevant patient reported outcomes (PROs) for quality measurement of acute care. Methods: We conducted semistructured interviews in patients ≥18 years presenting at the ED for internal medicine. Patients with a cognitive impairment or language barrier were excluded. Interviews were analysed using qualitative content analysis. Results: Thirty patients were interviewed. Patients reported outcomes as relevant in five domains: relief of symptoms, understanding the diagnosis, presence and understanding of the diagnostic and/or therapeutic plan, reassurance and patient experiences. Experiences were often mentioned as relevant to the perceived quality of care and appeared to influence the domain reassurance. Conclusion: We determined five domains of relevant PROs in acute care. These domains will be used for developing generic patient reported measures for acute care. The patients' perspective will be incorporated in these measures with the ultimate aim of organising truly patient-centred care at the ED

Quality of acute internal medicine: A patient-centered approach. Validation and usage of the Patient Reported Measure-acute care in the Netherlands

Background Providing high quality care is important and has gained more attention since the introduction of value-based healthcare. Value should be measured by outcomes achieved, relevant for patients. Patient-centeredness is one domain for quality improvement determined by the Institute of Medicine, aiming to deliver care responsive to the patient. The development and implementation of patient reported outcome- and experience measures can be used for this goal. Recently, we developed the Patient Reported Measure (PRM)-acute care, based on five relevant domains to evaluate and improve the quality of care in the Emergency Department (ED). Objective To validate the PRM-acute care, in order to evaluate and improve patient-centered care in the ED. Methods We performed a prospective questionnaire-based study. Patients >= 18 years presenting for internal medicine in the ED were eligible. The validity of the PRM-acute care was evaluated according to the COSMIN-criteria. We performed hypotheses testing to evaluate construct validity. The perceived quality of care was evaluated by statistical analysis. Results Face- and content validity was evaluated based on previously performed research and deemed good. Construct validity was supported by demonstrated differences between subgroups; patients with severe symptoms had a higher perceived quality of care. The correlation between overall satisfaction and the total mean score of the PRM-acute care (r = 0,447, p = 0.01) was significant. Overall, patients reported a mean perceived quality of care of 4.67/6.0. Conclusion The PRM-acute care is a valid instrument to measure the perceived quality of care in an acute setting for internal medicine patients. Additionally, patients reported a good perceived quality of care in the ED with scores ranging from moderate to well for each of the relevant domains. Therefore, we believe that the PRM-acute care can be implemented in daily practice to evaluate the perceived quality of care and to improve the quality of acute care

Quality of acute internal medicine: A patient-centered approach. Validation and usage of the Patient Reported Measure-acute care in the Netherlands

BACKGROUND: Providing high quality care is important and has gained more attention since the introduction of value-based healthcare. Value should be measured by outcomes achieved, relevant for patients. Patient-centeredness is one domain for quality improvement determined by the Institute of Medicine, aiming to deliver care responsive to the patient. The development and implementation of patient reported outcome- and experience measures can be used for this goal. Recently, we developed the Patient Reported Measure (PRM)-acute care, based on five relevant domains to evaluate and improve the quality of care in the Emergency Department (ED). OBJECTIVE: To validate the PRM-acute care, in order to evaluate and improve patient-centered care in the ED. METHODS: We performed a prospective questionnaire-based study. Patients ≥18 years presenting for internal medicine in the ED were eligible. The validity of the PRM-acute care was evaluated according to the COSMIN-criteria. We performed hypotheses testing to evaluate construct validity. The perceived quality of care was evaluated by statistical analysis. RESULTS: Face- and content validity was evaluated based on previously performed research and deemed good. Construct validity was supported by demonstrated differences between subgroups; patients with severe symptoms had a higher perceived quality of care. The correlation between overall satisfaction and the total mean score of the PRM-acute care (r = 0,447, p = 0.01) was significant. Overall, patients reported a mean perceived quality of care of 4.67/6.0. CONCLUSION: The PRM-acute care is a valid instrument to measure the perceived quality of care in an acute setting for internal medicine patients. Additionally, patients reported a good perceived quality of care in the ED with scores ranging from moderate to well for each of the relevant domains. Therefore, we believe that the PRM-acute care can be implemented in daily practice to evaluate the perceived quality of care and to improve the quality of acute care

Can acutely ill patients predict their outcomes? A scoping review.

The full impact of an acute illness on subsequent health is seldom explicitly discussed with patients. Patients' estimates of their likely prognosis have been explored in chronic care settings and can contribute to the improvement of clinical outcomes and patient satisfaction. This scoping review aimed to identify studies of acutely ill patients' estimates of their outcomes and potential benefits for their care. A search was conducted in PubMed, Embase, Web of Science and Google Scholar, using terms related to prognostication and acute care. After removal of duplicates, all articles were assessed for relevance by six investigator pairs; disagreements were resolved by a third investigator. Risk of bias was assessed according to the Cochrane Handbook for Systematic Reviews of Interventions. Our search identified 3265 articles, of which 10 were included. The methods of assessing self-prognostication were very heterogeneous. Patients seem to be able to predict their need for hospital admission in certain settings, but not their length of stay. The severity of their symptoms and the burden of their disease are often overestimated or underestimated by patients. Patients with severe health conditions and their relatives tend to be overoptimistic about the likely outcome. The understanding of acutely ill patients of their likely outcomes and benefits of treatment has not been adequately studied and is a major knowledge gap. Limited published literature suggests patients may be able to predict their need for hospital admission. Illness perception may influence help-seeking behaviour, speed of recovery and subsequent quality of life. Knowledge of patients' self-prognosis may enhance communication between patients and their physicians, which improves patient-centred care

Performance of the APOP-screener for predicting in-hospital mortality in older COVID-19 patients:a retrospective study

Abstract Background A variety of prediction models concerning COVID-19 have been proposed since onset of the pandemic, but to this date no gold standard exists. Mortality rates show a sharp increase with advancing age but with the large heterogeneity of this population in terms of comorbidities, vulnerability and disabilities, identifying risk factors is difficult. Therefore, we aimed to research the multidimensional concept of frailty, measured by the Acute Presenting Older Patient (APOP)-screener, as a risk factor for in-hospital mortality in older COVID-19 patients. Methods All consecutive patients of 70 years or older, with a PCR confirmed COVID-19 infection and a completed APOP-score, presenting at the Emergency Department (ED) of the Jeroen Bosch Hospital, the Netherlands, between February 27th 2020 and February 1st 2021 were retrospectively included. We gathered baseline characteristics and scored the CCI and CFS from patient records. The primary outcome was in-hospital mortality. Results A total of 292 patients met the inclusion criteria. Approximately half of the patients were considered frail by the APOP or CFS. 127 patients (43.5%) scored frail on the CFS, 158 (54.1%) scored high risk on the APOP-screener. 79 patients (27.1%) died during their hospital admission. The APOP-screener showed a significantly elevated risk of in-hospital mortality when patients scored both high risk of functional and evidence of cognitive impairment (OR 2.24, 95% 1.18–4.25). Significant elevation of in-hospital mortality was found for the high CCI-scores (≥ 5)(OR 1.78, 95% 1.02–3.11), but not for the highest CFS category (5–9, frail) (OR 1.35, 95% 0.75–2.47). The discriminatory performance of the APOP, CFS and CCI were comparable (AUC resp. 0.59 (0.52–0.66), 0.54 (0.46–0.62) and 0.58 (0.51–0.65)). Conclusion Although the elevated risk for in-hospital mortality found for the most frail patients as scored by the APOP, this instrument has poor discriminatory value. Additionally, the CFS did not show significance in predicting in-hospital mortality and had a poor discriminatory value as well. Therefore, treatment decisions based on frailty or comorbidities alone should be made with caution. Approaching the heterogeneity of the older population by adding frailty as assessed by the APOP-score to existing prediction models may enhance the predictive value of these models

Health-Related Quality of Life in Adrenocortical Carcinoma: Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry

We aimed to develop a disease-specific adrenocortical carcinoma (ACC) health-related quality of life (HRQoL) questionnaire (ACC-QOL) and assess HRQoL in a population-based cohort of patients with ACC. Development was in line with European Organization for Research and Treatment of Cancer (EORTC) guidelines, though not an EORTC product. In phase I and II, we identified 90 potential HRQoL issues using literature and focus groups, which were reduced to 39 by healthcare professionals. Pilot testing resulted in 28 questions, to be used alongside the EORTC QLQ-C30. In Phase III, 100 patients with ACC were asked to complete the questionnaires twice in the PROFILES registry (3-month interval, respondents: first 67, second 51). Confirmatory factor analysis demonstrated the structural validity of 26 questions with their scale structure (mitotane side-effects, hypercortisolism/hydrocortisone effects, emotional effects). Internal consistency and reliability were good (Cronbach’s alpha 0.897, Interclass correlation coefficient 0.860). Responsiveness analysis showed good discriminative ability (AUC 0.788). Patients diagnosed more than 5 years ago reported a good HRQoL compared with the Dutch reference population, but experienced residual fatigue and emotional problems. Patients who underwent recent treatment reported a lower HRQoL and problems in several domains. In conclusion, we developed an ACC-specific HRQoL questionnaire with good psychometric properties

Health-Related Quality of Life in Adrenocortical Carcinoma: Development of the Disease-Specific Questionnaire ACC-QOL and Results from the PROFILES Registry

We aimed to develop a disease-specific adrenocortical carcinoma (ACC) health-related quality of life (HRQoL) questionnaire (ACC-QOL) and assess HRQoL in a population-based cohort of patients with ACC. Development was in line with European Organization for Research and Treatment of Cancer (EORTC) guidelines, though not an EORTC product. In phase I and II, we identified 90 potential HRQoL issues using literature and focus groups, which were reduced to 39 by healthcare professionals. Pilot testing resulted in 28 questions, to be used alongside the EORTC QLQ-C30. In Phase III, 100 patients with ACC were asked to complete the questionnaires twice in the PROFILES registry (3-month interval, respondents: first 67, second 51). Confirmatory factor analysis demonstrated the structural validity of 26 questions with their scale structure (mitotane side-effects, hypercortisolism/hydrocortisone effects, emotional effects). Internal consistency and reliability were good (Cronbach's alpha 0.897, Interclass correlation coefficient 0.860). Responsiveness analysis showed good discriminative ability (AUC 0.788). Patients diagnosed more than 5 years ago reported a good HRQoL compared with the Dutch reference population, but experienced residual fatigue and emotional problems. Patients who underwent recent treatment reported a lower HRQoL and problems in several domains. In conclusion, we developed an ACC-specific HRQoL questionnaire with good psychometric properties