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The Impact of Advanced Home Care on Health-related Quality of Life. Reports in the end of life from palliative care patients with cancer
Malmö högskola, Faculty of Health and Society (HS).
2008 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim of study - The aim of the present work was to compare patients with advancedcancer receiving specialized palliative home care with those receiving conventional carewith regard to time spent at home and place of death (Paper I), factors associated with thepatients’ choice of palliative care (Paper II), and to describe the health-related quality oflife (HRQL) and the occurrence and changes in symptoms over the last three months ofthe patients’ lives (Paper III). In addition, sociodemographic and clinical differencesbetween participants and dropouts were explored in order to establish whether themissing data could be regarded as missing at random (Paper IV).Background - A hospital-based advanced home care programme was initiated in Malmö,Sweden in December1995, in order to enable patients to remain at home for a longerperiod and to choose to die at home. The allocation to advanced home care (AHC) orconventional care (CC) was performed according to the patients’ preferences. Thisintervention offered an opportunity to investigate the effect of AHC and to describe theHRQL of patients with a progressive, life-threatening disease.Methods - A prospective longitudinal comparative study was performed including 297patients consecutively recruited over 2½ years. The two groups of patients (AHC andCC) were compared and the main outcome variables were place of death, time spent ininstitution or at home, and the patients’ HRQL. The latter was assessed monthly by usingself-reported questionnaires, including the European Organisation for Research andTreatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30), the Impactof Event Scale (IES), five questions about social support (MA) and two items concerninggeneral well-being (NT). At the same time, in Trondheim, Norway, a similar palliativecare intervention programme was started. The design of the study was slightly different,but patients were evaluated using the same sociodemographic and clinical variables, andquestionnaire data were collected in the same way as in the Swedish study.Results - The AHC patients spent more time outside the hospital and more patients diedat home compared with patients in the CC group (Paper I). However, there was adifference between patients in the two interventions. Compared with the CC patients,patients who chose the AHC programme had lived longer with their cancer diagnosis,had a shorter survival period after study enrolment, and had poorer performance status. Inaddition, although all patients had reduced HRQL at inclusion, the AHC patients reportedpoorer functioning and more symptoms than the CC patients (Paper II). Results from theHRQL questionnaires returned during the last three months of the patients’ lives wereanalysed in order to describe the symptom burden of dying patients. Due to considerableattrition over the study period, data from the Norwegian study were included in order toincrease the study sample to 116 patients. Generally, a marked, but gradual deteriorationwas seen during the patients’ last three months of life. A more rapid increase in problemswas observed between two and one month before death regarding Physical, Cognitiveand Social function, as well as Fatigue. The mean scores for Pain, Nausea/Vomiting,Sleeping problems, Diarrhoea and Financial impact were stable over time (Paper III).Analyses of the characteristics of patients who dropped out of the study after filling in thefirst questionnaire after inclusion confirmed that they had a less favourable prognosis,with regard to both clinical variables and HRQL data. This pattern was not found whenanalysing data from patients dropping out of the study during the last two months beforedeath (Paper IV).Conclusions -The results obtained in this work add knowledge about patients’preferences regarding care at the end of life, and changes in their HRQL during the lastfew months of life. The palliative intervention with AHC proved successful, and enabledmore patients to stay at home for a longer period, and to die at home. Dying at home isstrongly associated with the patients’ preference to do so. Due to the design of the study,the impact of such preferences cannot be separated from the impact of the AHC. Theresults indicate that patients are reluctant to accept home care until necessary due to theseverity of functioning impairments and symptom burden. It is important to be aware ofthe high level of symptoms in the patients’ last three months of life. Symptom assessmentusing standardised questionnaires may enhance the focus on symptom management.Results from HRQL studies must be interpreted with care due to non-random attrition.This is less evident close to death.

Place, publisher, year, edition, pages
Malmö University Hospital, Lund University , 2008.
Series
Lund University, Faculty of Medicine doctoral dissertation series, ISSN 1652-8220 ; 85
Keywords [en]
palliative medicine, quality of life
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:mau:diva-7310Local ID: 7171ISBN: 978-91-86059-38-5 (print)OAI: oai:DiVA.org:mau-7310DiVA, id: diva2:1404224
Available from: 2020-02-28 Created: 2020-02-28 Last updated: 2022-06-27Bibliographically approved
List of papers
1. Place of death: hospital-based advanced home care versus conventional care - A prospective study in palliative cancer care
Open this publication in new window or tab >>Place of death: hospital-based advanced home care versus conventional care - A prospective study in palliative cancer care
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2004 (English)In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 18, no 7, p. 585-593Article in journal (Refereed) Published
Abstract [en]

The purpose of this prospective nonrandomized study was to evaluate time spent at home, place of death and differences in sociodemographic and medical characteristics of patients, with cancer in palliative stage, receiving either hospital-based advanced home care (AHC), including 24-hour service by a multidisciplinary palliative care team or conventional hospital care (CC). Recruitment to the AHC group and to the study was a two-step procedure. The patients were assigned to either hospital-based AHC or CC according to their preferences. Following this, the patients were asked to participate in the study. Patients were eligible for the study if they had malignant disease, were older than 18 years and had a survival expectancy of 2-12 months. A total of 297 patients entered the study and 280 died during the study period of two and a half years, 117 in the AHC group and 163 in the CC group. Significantly more patients died at home in the AHC group (45%) compared with the CC group (10%). Preference for and referral to hospital-based AHC were not related to sociodemographic or medical characteristics. However, death at home was associated with living together with someone. Advanced hospital-based home care targeting seriously ill cancer patients with a wish to remain at home enable a substantial number of patients to die in the place they desire.

Place, publisher, year, edition, pages
Arnold Schönberg Center, 2004
National Category
Otorhinolaryngology
Identifiers
urn:nbn:se:mau:diva-5623 (URN)10.1191/0269216304pm924oa (DOI)000224867800002 ()15540666 (PubMedID)2-s2.0-7944237767 (Scopus ID)2743 (Local ID)2743 (Archive number)2743 (OAI)
Available from: 2020-02-28 Created: 2020-02-28 Last updated: 2024-08-20Bibliographically approved
2. Characteristics and Quality of Life of Patients Who Choose Home Care at the End of Life
Open this publication in new window or tab >>Characteristics and Quality of Life of Patients Who Choose Home Care at the End of Life
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2008 (English)In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 36, no 3, p. 217-227Article in journal (Refereed) Published
Abstract [en]

Cancer patients with advanced disease and short-survival expectancy were given hospitalbased advanced home care (AHC) or conventional care (CC), according to their preference. The two groups were compared at baseline to investigate whether there were differences between the AHC and the CC patients that may help explain their choice of care. The patients were consecutively recruited over 2½ years. Sociodemographic and medical data, and the health-related quality of life (HRQL) of the two groups were compared. HRQL was assessed using a self-reporting questionnaire, including the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQC30), the Impact of Event Scale (IES), five questions about social support, and two items concerning general well-being. The AHC group showed significantly poorer functioning on all the EORTC QLQ-C30 scales and an overall higher symptom burden than the CC patients. Fewer of the AHC patients were receiving cancer treatment. The AHC patients had lived longer with their cancer diagnosis, had a significantly shorter survival after study enrollment, and a significantly poorer performance status. The major differences between the two groups seemed to be related to being at different stages in their disease. The results indicate that patients are reluctant to accept home care until absolutely necessary due to severity of functioning impairments and symptom burden. These findings should be taken into consideration in planning palliative care services. J Pain Symptom Manage 2008;36:217e227. 2008 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Place, publisher, year, edition, pages
Elsevier Inc., 2008
Keywords
advanced home care, preferences, health-related quality of life, EORTC
National Category
Hematology
Identifiers
urn:nbn:se:mau:diva-4974 (URN)10.1016/j.jpainsymman.2007.10.010 (DOI)000259211100001 ()18400462 (PubMedID)2-s2.0-49749118838 (Scopus ID)7167 (Local ID)7167 (Archive number)7167 (OAI)
Available from: 2020-02-28 Created: 2020-02-28 Last updated: 2024-02-05Bibliographically approved
3. Health-related quality of life during the last three months
Open this publication in new window or tab >>Health-related quality of life during the last three months
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2009 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 17, no 2, p. 191-198Article in journal (Refereed) Published
Abstract [en]

Goals of work The aim of the study was to explore the development of functioning impairments and symptom occurrence during the last months of life of advanced cancer patients. Materials and methods Self-reported data from 116 patients who all completed the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire—Core 30 (EORTC QLQ-C30) at 3, 2 and 1 month before death were analysed. Main results All functioning aspects deteriorated. For physical, cognitive and social function, the most marked changes occurred between 2 and 1 month before death. The proportion reporting serious difficulties with self-care activities increased from 14% to 43%. The most seriously affected activity could not be distinguished from the EORTC QLQ-C30 scores. Levels of fatigue, dyspnoea and appetite loss increased significantly. More than 50% of the patients had severe pain at all assessments, and only a minor number (8%) reported any improvement. Conclusions The findings have implications for the planning of care and indicate that further research is required to improve assessment, treatment and follow-up procedures. Adequate pain treatment seems still to be a challenge. Anorexia, fatigue as well as dyspnoea are all symptoms that need further focus.

Place, publisher, year, edition, pages
Springer-Verlag New York, 2009
Keywords
Self-assessment questionnaires, Health-related quality of life. End of life
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:mau:diva-4479 (URN)10.1007/s00520-008-0477-2 (DOI)000261954100011 ()18581147 (PubMedID)2-s2.0-58149084564 (Scopus ID)7168 (Local ID)7168 (Archive number)7168 (OAI)
Available from: 2020-02-28 Created: 2020-02-28 Last updated: 2024-02-05Bibliographically approved
4. Characteristics and implications of attrition in health-related quality of life studies in palliative care
Open this publication in new window or tab >>Characteristics and implications of attrition in health-related quality of life studies in palliative care
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2009 (English)In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 23, no 5, p. 432-440Article in journal (Refereed) Published
Abstract [en]

In a longitudinal study of 297 palliative care patients, 280 patients were followed from inclusion to death. Characteristics and health-related quality of life (HRQL) of the participants and those who later dropped out were compared at inclusion, and 3 and 2 months before their death. At inclusion, the dropouts were older (P = 0.001), had reduced Karnofsky performance score (P < 0.001), received more help from the local authority (P = 0.004) and had reduced HRQL compared with patients who continued in the study and completed the next questionnaire. There were no differences in any of the HRQL parameters between participants and dropouts 3 months before death. Two months before death, differences in HRQL were found, but in favour of the dropouts. Data from patients close to death may be representative of a larger group of patients, whereas initial dropouts may lead to a positive bias of reported HRQL.

Keywords
quality of life, palliative care
National Category
Cancer and Oncology
Identifiers
urn:nbn:se:mau:diva-5067 (URN)10.1177/0269216309104057 (DOI)000266941500008 ()19304808 (PubMedID)2-s2.0-67649311967 (Scopus ID)8864 (Local ID)8864 (Archive number)8864 (OAI)
Available from: 2020-02-28 Created: 2020-02-28 Last updated: 2024-12-03Bibliographically approved

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