| 1. |
- Ahlner-Elmqvist, Marianne, et al.
(författare)
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Characteristics and implications of attrition in health-related quality of life studies in palliative care
- 2009
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:5, s. 432-440
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 2. |
- Ahlner-Elmqvist, Marianne, et al.
(författare)
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Characteristics and Quality of Life of Patients Who Choose Home Care at the End of Life
- 2008
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Ingår i: Journal of Pain and Symptom Management. - : Elsevier Inc.. - 0885-3924 .- 1873-6513. ; 36:3, s. 217-227
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 3. |
- Ahlner-Elmqvist, Marianne, et al.
(författare)
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Place of death : hospital-based advanced home care versus conventional care - A prospective study in palliative cancer care
- 2004
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Ingår i: Palliative Medicine. - : Arnold Schönberg Center. - 0269-2163 .- 1477-030X. ; 18:7, s. 585-593
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Bjordal, Kristin, et al.
(författare)
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A prospective study of quality of life in head and neck cancer patients. Part II: Longitudinal data
- 2001
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Ingår i: Laryngoscope. - 1531-4995. ; 111:8, s. 1440-1452
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: To evaluate the health-related quality of life (HRQL) of patients with head and neck cancer during and after treatment with radiotherapy, surgery, and chemotherapy. STUDY DESIGN: Prospective, descriptive study. METHODS: All new patients in four institutions in Norway and Sweden were asked to participate. Health-related quality of life was assessed at baseline and at 1, 2, 3, 6, and 12 months after start of treatment by means of the European Organization for Research and Treatment of Cancer (EORTC) Core Quality of Life Questionnaire and the EORTC head and neck cancer-specific questionnaire. Baseline results are described elsewhere; longitudinal results are presented in the current article. Three hundred fifty-seven patients with cancer in the oral cavity, pharynx, larynx, nose, sinuses, and salivary glands and neck node metastases from unknown primaries filled in the questionnaires at baseline. RESULTS: Seventy-eight percent of the patients who were alive after 12 months filled in all questionnaires (218/280). The general trend was that HRQL deteriorated significantly during treatment, followed by a slow recovery until the 12-month follow-up with few exceptions (senses, dry mouth, and sexuality). Patients who later died reported worse HRQL at each assessment point compared with patients who filled in all six questionnaires, whereas those who dropped out of the study for other reasons were quite similar to patients who filled in all questionnaires. The patients with pharyngeal cancer in general reported worse HRQL compared with the other groups and did not reach pretreatment values in several domains. Stage was also an important factor for HRQL in patients with head and neck cancer. CONCLUSION: Detailed knowledge about the differences between groups and changes over time may aid us in the communication with patients and in the design of intervention studies focusing on improvement of the support and rehabilitation of patients with head and neck cancer.
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| 5. |
- Hammerlid, Eva, et al.
(författare)
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Prospective, longitudinal quality-of-life study of patients with head and neck cancer: a feasibility study including the EORTC QLQ-C30
- 1997
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Ingår i: Otolaryngology: Head and Neck Surgery. - 0194-5998. ; 116:6, s. 666-673
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Tidskriftsartikel (refereegranskat)abstract
- Despite modern advances in the treatment of head and neck cancer, the survival rate fails to improve. Considering the different treatment modalities involved, quality of life has been thought of as an additional end point criterion for use in clinical trials. A Nordic protocol to measure the quality of life of head and neck cancer patients before, during, and after treatment was established. Before the study, a pilot study was done with this protocol. The main purpose of this pilot study was to find out whether this cancer population would answer quality-of-life questionnaires repeatedly (six times) over a 1-year period and whether the chosen questionnaires-a core questionnaire (European Organisation for Research and Treatment of Cancer Core Quality of Life Questionnaire (EORTC QLQ-C30)), a tumor-specific questionnaire, and a psychological distress measure (Hospital Anxiety and Depression scale (HAD))-were sensitive for changes to functions and symptoms during the study year. The results presented in this article all refer to the pilot study. Forty-eight consecutive patients agreed to participate in the study. The most common tumor locations were the oral cavity (17) and the larynx (12). Almost all patients received combined treatment: 45 of 48 radiation therapy, 18 of 48 chemotherapy, and 17 of 48 surgery. After the primary treatment, 40 patients had complete tumor remission. Four of the 48 patients did not answer any questionnaires and were therefore excluded from the study. Of the remaining 44 patients, 3 died during the study year, and another 6 withdrew for various reasons. Thirty-five (85%) of the 41 patients alive at the 1-year follow-up answered all six questionnaires and thus completed the study. Mailed questionnaires were used throughout the study. All questionnaires were well accepted and found to be sensitive to changes during the study year. The greatest variability was found for symptoms and functions related specifically to head and neck cancer. The symptoms were swallowing difficulties, hoarse voice, sore mouth, dry mouth, and problems with taste. They all showed the same pattern, with an increase of symptoms during and just after finishing the treatment. The HAD scale revealed a high level of psychological distress, with 21% probable cases of psychiatric morbidity at diagnosis. In conclusion, it was shown that the study design and questionnaires were feasible for the forthcoming prospective quality-of-life assessment of Swedish and Norwegian head and neck cancer patients.
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| 6. |
- Petersen, Morten Aa, et al.
(författare)
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Development of an item bank for computerized adaptive test (CAT) measurement of pain.
- 2016
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Ingår i: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. - : Springer Science and Business Media LLC. - 1573-2649. ; 25:1, s. 1-11
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Tidskriftsartikel (refereegranskat)abstract
- Patient-reported outcomes should ideally be adapted to the individual patient while maintaining comparability of scores across patients. This is achievable using computerized adaptive testing (CAT). The aim here was to develop an item bank for CAT measurement of the pain domain as measured by the EORTC QLQ-C30 questionnaire.
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