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

Abstract 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.

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Osteoarthritis in Italy: Impact on Health-Related Quality of Life and Health Care Resources

Farmeconomia Health economics and therapeutic pathways ◽

10.7175/fe.v22i1.1496 ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Patrizia Berto ◽

Maria Domenica Sanna ◽

James Jackson ◽

Mia Berry ◽

Jessica Jackson

Keyword(s):

Quality Of Life ◽

Health Care ◽

Disease Severity ◽

Functional Limitations ◽

Work Productivity ◽

Health Related Quality ◽

Treatment Needs ◽

Related Quality ◽

Health Related

OBJECTIVE: To determine how osteoarthritis (OA) severity correlates with self-reported outcomes relevant from the patient’s perspective in the Italian clinical setting.METHODS: Data were drawn from the 2017-18 Adelphi OA Disease Specific ProgrammeTM (DSP). Data were collected in the Italian clinical practice settings by primary care physicians, rheumatologists, orthopedists, and their patients with OA, during their regular office visits. Physicians completed information about OA-related visits to healthcare professionals (HCPs), tests/scans conducted, emergency room (ER) visits, surgeries, and OA-related treatment. Physicians also rated patients’ functioning on a 0 to 10 scale (0 = fully functional; 10 = completely impaired). Outcomes included Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) score, functional limitations, treatment needs, EuroQoL-5 Dimension (EQ-5D) visual analogue scale (VAS), the work productivity and activity impairment. Descriptive statistics (numbers and percent for categorical variables; means with standard deviations [SD] for continuous variables) were used to evaluate the different variables as appropriate.RESULTS: The study population comprised 900 patients from Italy with knee (40.9%), back (38.7%), hip (27.9%), and/or shoulder (20.3%) OA. Mean age was 66.6 years with a prevalence of female (63%) patients. Patients had mild (26%), moderate (54%), severe (20%) disease severity. Patients with severe disease reported higher functional limitations, greater use of treatments, reduced quality of life, and impaired work productivity and activity. The burdens were higher among elderly and obese patients and in patients with highest pain severity score.CONCLUSIONS: The results from this cross-sectional study show the impact of OA disease severity on all dimensions of health-related quality of life (HRQoL), as well as in OA-related health care resource use.

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Explanatory Factors for Disease-Specific Health-Related Quality of Life in Women with Anorexia Nervosa

Journal of Clinical Medicine ◽

10.3390/jcm10081592 ◽

2021 ◽

Vol 10 (8) ◽

pp. 1592

Author(s):

Laura Al-Dakhiel Winkler ◽

Claire Gudex ◽

Mia Beck Lichtenstein ◽

Michael Ejnar Røder ◽

Carol E. Adair ◽

...

Keyword(s):

Quality Of Life ◽

Eating Disorder ◽

Normal Weight ◽

Health Related Quality ◽

Explanatory Factors ◽

Related Quality ◽

Health Related ◽

Disease Specific ◽

Specific Health

A better understanding of explanatory factors for disease-specific health-related quality of life (HRQoL) in anorexia nervosa (AN) could help direct treatment providers to aspects of the most relevance for patient wellbeing and recovery. We aimed to investigate whether factors associated with HRQoL are the same for women with AN and normal-weight controls. The participants in this study were women with AN recruited from specialized eating disorder centers in Denmark and healthy, normal-weight controls invited via online social media. Participants completed online questionnaires on medical history, disease-specific HRQoL (Eating Disorders Quality of Life Scale, EDQLS) and generic HRQoL (SF-36), eating disorder symptomatology, depression, psychological wellbeing, and work and social adjustment. Questionnaires were fully completed by 211 women with AN (median age 21.7 years) and 199 controls (median age 23.9 years). Women with AN had poorer scores on all measures, i.e., worse HRQoL, psychological health, and work/social functioning. Eating disorder symptomatology affected EDQLS score in both groups, but poorer HRQoL in women with AN was also significantly associated with worse scores on bulimia, maturity fears, depression, vitality, and with older age. The factors investigated together explained 79% of the variance in EDQLS score. Management of disordered self-assessment and thought processes may be of particular importance to women with AN. Greater emphasis on these aspects alongside weight gain could enhance patient–clinician alliance and contribute to better treatment outcomes.

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Randomized controlled study of the impact of a participatory patient care plan among primary care patients with common chronic diseases: a one-year follow-up study

BMC Health Services Research ◽

10.1186/s12913-021-06716-6 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Nina Tusa ◽

Hannu Kautiainen ◽

Pia Elfving ◽

Sanna Sinikallio ◽

Pekka Mäntyselkä

Keyword(s):

Quality Of Life ◽

Patient Care ◽

Usual Care ◽

Care Plan ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Disease Specific

Abstract Backround Chronic diseases and multimorbidity are common in the ageing population and affect the health related quality of life. Health care resources are limited and the continuity of care has to be assured. Therefore it is essential to find demonstrable tools for best treatment practices for patients with chronic diseases. Our aim was to study the influence of a participatory patient care plan on the health-related quality of life and disease specific outcomes related to diabetes, ischemic heart disease and hypertension. Methods The data of the present study were based on the Participatory Patient Care Planning in Primary Care. A total of 605 patients were recruited in the Siilinjärvi Health Center in the years 2017–2018 from those patients who were followed up due to the treatment of hypertension, ischemic heart disease or diabetes. Patients were randomized into usual care and intervention groups. The intervention consisted of a participatory patient care plan, which was formulated in collaboration with the patient and the nurse and the physician during the first health care visit. Health-related quality of life with the 15D instrument and the disease-specific outcomes of body mass index (BMI), low density lipoprotein cholesterol (LDL-C), hemoglobin A1c (HbA1C) and blood pressure were assessed at the baseline and after a one-year follow-up. Results A total of 587 patients with a mean age of 69 years were followed for 12 months. In the intervention group there were 289 patients (54% women) and in the usual care group there were 298 patients (50% women). During the follow-up there were no significant changes between the groups in health-related quality and disease-specific outcomes. Conclusions During the 12-month follow-up, no significant differences between the intervention and the usual care groups were detected, as the intervention and the usual care groups were already in good therapeutic equilibrium at the baseline. Trial registration ClinicalTrials.gov Identifier: NCT02992431. Registered 14/12/2016

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Commentary on “Health economics and the value of therapy in Alzheimer's disease.” Quality of life in dementia: Development and use of a disease-specific measure of health-related quality of life in dementia

Alzheimer s & Dementia ◽

10.1016/j.jalz.2007.04.384 ◽

2007 ◽

Vol 3 (3) ◽

pp. 166-171 ◽

Cited By ~ 8

Author(s):

Sube Banerjee

Keyword(s):

Quality Of Life ◽

Alzheimer’S Disease ◽

Health Economics ◽

Health Related Quality ◽

Specific Measure ◽

Related Quality ◽

Health Related ◽

Disease Specific Measure ◽

Disease Specific

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Health-Related Quality of Life in Adrenocortical Carcinoma

Cancers ◽

10.3390/cancers11101500 ◽

2019 ◽

Vol 11 (10) ◽

pp. 1500 ◽

Cited By ~ 1

Author(s):

Rebecca V. Steenaard ◽

Laura A. Michon ◽

Harm R. Haak

Keyword(s):

Quality Of Life ◽

General Population ◽

Adrenocortical Carcinoma ◽

Treatment Options ◽

Clinical Aspects ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

The Impact

Insight into the health-related quality of life (HRQoL) impact of adrenocortical carcinoma (ACC) is important. The disease and its treatment options potentially have an impact on HRQoL. For patients with limited survival, HRQoL research is of utmost importance. We will therefore provide an overview of HRQoL studies in patients with ACC. We found six studies that measured HRQoL in 323 patients with ACC (3 cross-sectional, 1 cohort, 2 trials), all indicating a reduced HRQoL compared to the general population. The FIRMACT trial found that HRQoL of patients with ACC was reduced compared to the general population, and that chemotherapy-mitotane further reduced HRQoL even though survival improved. Clinical aspects of the disease, including cortisol and aldosterone production and adrenal insufficiency have shown great impact on HRQoL in benign disease, even after the recovery of hormonal status. However, the impact of malignant adrenal disease and treatment options on HRQoL including adrenalectomy, radiotherapy, mitotane therapy, and chemotherapy have not been sufficiently studied in patients with ACC. Although the number of HRQoL studies in patients with ACC is limited, the existing literature does indicate that ACC has a large impact on patients’ HRQoL, with disease specific aspects. Further HRQoL research in patients with ACC is essential to improve patient-centered care, preferably by using an ACC-specific HRQoL questionnaire.

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