Assessment of Quality of Life of Family Members of Inpatients with End-Stage Disease

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.

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A Review of Prognostic Tools in Heart Failure

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909117709468 ◽

2017 ◽

Vol 35 (3) ◽

pp. 514-522 ◽

Cited By ~ 7

Author(s):

Jennifer Treece ◽

Hrak Chemchirian ◽

Neil Hamilton ◽

Manar Jbara ◽

Venkataramanan Gangadharan ◽

...

Keyword(s):

Quality Of Life ◽

Heart Failure ◽

Palliative Medicine ◽

Poor Prognosis ◽

Advanced Heart Failure ◽

Improve Quality ◽

Stage Disease ◽

End Stage ◽

Patients With Poor Prognosis

A minority of patients with end-stage disease are referred to palliative medicine for consultation in advanced heart failure. Educating stakeholders, including primary care, cardiology, and critical care of the benefits of hospice and palliative medicine for patients with poor prognosis, may increase appropriately timed referrals and improve quality of life for these patients. This article reviews multiple tools useful in prognostication in the setting of advanced heart failure.

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Skin disorders

Oxford Textbook of Palliative Nursing ◽

10.1093/med/9780199332342.003.0018 ◽

2015 ◽

pp. 325-340 ◽

Cited By ~ 1

Author(s):

Susie Seaman ◽

Barbara M. Bates-Jensen

Keyword(s):

Quality Of Life ◽

Management Strategies ◽

Skin Disorders ◽

Cutaneous Manifestations ◽

Goals Of Care ◽

Basic Care ◽

Stage Disease ◽

Psychosocial Implications ◽

End Stage

Skin disorders are both emotionally and physically challenging for patients and caregivers. Cutaneous symptoms may be the result of disease progression, complications associated with end-stage disease or the end of life, or simple changes in function of urinary or fecal diversions. All cutaneous symptoms require attention to basic care issues, creativity in management strategies, and thoughtful attention to the psychosocial implications of cutaneous manifestations. Although the goals of care do not include curing the condition, they always include alleviating the distressing symptomatology and improving quality of life. The most distressing symptoms associated with skin disorders are odor, exudate, and pain.

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Health-related quality of life among breast, prostate, and colorectal cancer patients with end-stage disease

Quality of Life Research ◽

10.1007/s11136-013-0562-y ◽

2013 ◽

Vol 23 (4) ◽

pp. 1387-1394 ◽

Cited By ~ 36

Author(s):

Niilo Färkkilä ◽

Saku Torvinen ◽

Risto P. Roine ◽

Harri Sintonen ◽

Juha Hänninen ◽

...

Keyword(s):

Quality Of Life ◽

Colorectal Cancer ◽

Cancer Patients ◽

Health Related Quality ◽

Stage Disease ◽

Related Quality ◽

Health Related ◽

Colorectal Cancer Patients ◽

End Stage

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Impact of Pets in the Quality of Life and the Attachment Patterns of Puerto Rican Family Members

PsycEXTRA Dataset ◽

10.1037/e573982014-043 ◽

2014 ◽

Author(s):

Stephen Gonzalez

Keyword(s):

Quality Of Life ◽

Puerto Rican ◽

Family Members ◽

Attachment Patterns

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Emergency Medicine Palliative Care Access (EMPallA): protocol for a multicentre randomised controlled trial comparing the effectiveness of specialty outpatient versus nurse-led telephonic palliative care of older adults with advanced illness

BMJ Open ◽

10.1136/bmjopen-2018-025692 ◽

2019 ◽

Vol 9 (1) ◽

pp. e025692 ◽

Cited By ~ 3

Author(s):

Corita R Grudzen ◽

Deborah J Shim ◽

Abigail M Schmucker ◽

Jeanne Cho ◽

Keith S Goldfeld

Keyword(s):

Quality Of Life ◽

Older Adults ◽

Palliative Care ◽

Randomised Controlled Trial ◽

Case Management ◽

Controlled Trial ◽

Chronic Obstructive ◽

Randomised Controlled ◽

End Stage

IntroductionEmergency department (ED)-initiated palliative care has been shown to improve patient-centred outcomes in older adults with serious, life-limiting illnesses. However, the optimal modality for providing such interventions is unknown. This study aims to compare nurse-led telephonic case management to specialty outpatient palliative care for older adults with serious, life-limiting illness on: (1) quality of life in patients; (2) healthcare utilisation; (3) loneliness and symptom burden and (4) caregiver strain, caregiver quality of life and bereavement.Methods and analysisThis is a protocol for a pragmatic, multicentre, parallel, two-arm randomised controlled trial in ED patients comparing two established models of palliative care: nurse-led telephonic case management and specialty, outpatient palliative care. We will enrol 1350 patients aged 50+ years and 675 of their caregivers across nine EDs. Eligible patients: (1) have advanced cancer (metastatic solid tumour) or end-stage organ failure (New York Heart Association class III or IV heart failure, end-stage renal disease with glomerular filtration rate <15 mL/min/m2, or global initiative for chronic obstructive lung disease stage III, IV or oxygen-dependent chronic obstructive pulmonary disease); (2) speak English; (3) are scheduled for ED discharge or observation status; (4) reside locally; (5) have a working telephone and (6) are insured. Patients will be excluded if they: (1) have dementia; (2) have received hospice care or two or more palliative care visits in the last 6 months or (3) reside in a long-term care facility. We will use patient-level block randomisation, stratified by ED site and disease. Effectiveness will be compared by measuring the impact of each intervention on the specified outcomes. The primary outcome will measure change in patient quality of life.Ethics and disseminationInstitutional Review Board approval was obtained at all study sites. Trial results will be submitted for publication in a peer-reviewed journal.Trial registration numberNCT03325985; Pre-results.

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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Major Impact on Lives of Both Patients and Family Members

Medicina ◽

10.3390/medicina57010043 ◽

2021 ◽

Vol 57 (1) ◽

pp. 43

Author(s):

Esme Brittain ◽

Nina Muirhead ◽

Andrew Y. Finlay ◽

Jui Vyas

Keyword(s):

Quality Of Life ◽

Chronic Fatigue Syndrome ◽

Physical Health ◽

Family Members ◽

Chronic Fatigue ◽

Myalgic Encephalomyelitis ◽

World Health ◽

Life Questionnaire ◽

Fatigue Syndrome

Background and objectives: To explore the impacts that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has on the patient and their family members using the WHOQOL-BREF (Abbreviated World Health Organisation Quality of Life questionnaire) and FROM-16 (Family Reported Outcome Measure-16) quality of life assessments. Materials and Methods: A quantitative research study using postal questionnaires was conducted. A total of 39 adult volunteers expressed an interest in participating in the study: 24 returned appropriately completed questionnaires. Patients with ME/CFS completed the WHOQOL-BREF and up to four of their family members completed the FROM-16 questionnaire. Results: ME/CFS negatively affects the quality of life of the patient (median scores WHOQOL-BREF: Physical health = 19, Psychological = 44, Social relationships = 37.5, Environment = 56, n = 24) and their family members’ quality of life (FROM-16: Emotional = 9.5, Personal and social = 11.5, Overall = 20.5, n = 42). There was a significant correlation between the patient’s reported quality of life scores and their family members’ mean FROM-16 total scores. Conclusions: This study identifies the major impact that having an adult family member with ME/CFS has on the lives of partners and of other family members. Quality of life of ME/CFS patients was reduced most by physical health compared to the other domains. Quality of life of family members was particularly impacted by worry, family activities, frustration and sadness. This highlights the importance of measuring the impact on the lives of family members using tools such as the FROM-16 in the ME/CFS clinical encounter and ensuring appropriate support is widely available to family members.

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Family reported outcomes, an unmet need in the management of a patient's disease: appraisal of the literature

Health and Quality of Life Outcomes ◽

10.1186/s12955-021-01819-4 ◽

2021 ◽

Vol 19 (1) ◽

Author(s):

R. Shah ◽

F. M. Ali ◽

A. Y. Finlay ◽

M. S. Salek

Keyword(s):

Quality Of Life ◽

Family Members ◽

Unmet Need ◽

Reliability And Validity ◽

Chronic Health Condition ◽

Family Quality Of Life ◽

Good Reliability ◽

Huge Impact ◽

The Impact

Abstract Background A person’s chronic health condition or disability can have a huge impact on the quality of life (QoL) of the whole family, but this important impact is often ignored. This literature review aims to understand the impact of patients' disease on family members across all medical specialities, and appraise existing generic and disease-specific family quality of life (QoL) measures. Methods The databases Medline, EMBASE, CINHAL, ASSIA, PsycINFO and Scopus were searched for original articles in English measuring the impact of health conditions on patients' family members/partner using a valid instrument. Results Of 114 articles screened, 86 met the inclusion criteria. They explored the impact of a relative's disease on 14,661 family members, mostly 'parents' or 'mothers', using 50 different instruments across 18 specialities including neurology, oncology and dermatology, in 33 countries including the USA, China and Australia. These studies revealed a huge impact of patients' illness on family members. An appraisal of family QoL instruments identified 48 instruments, 42 disease/speciality specific and six generic measures. Five of the six generics are aimed at carers of children, people with disability or restricted to chronic disease. The only generic instrument that measures the impact of any condition on family members across all specialities is the Family Reported Outcome Measure (FROM-16). Although most instruments demonstrated good reliability and validity, only 11 reported responsiveness and only one reported the minimal clinically important difference. Conclusions Family members' QoL is greatly impacted by a relative's condition. To support family members, there is a need for a generic tool that offers flexibility and brevity for use in clinical settings across all areas of medicine. FROM-16 could be the tool of choice, provided its robustness is demonstrated with further validation of its psychometric properties.

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