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- Hammerlid, Eva, 1957, et al.
(author)
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A prospective study of quality of life in head and neck cancer patients. Part I: At diagnosis
- 2001
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In: Laryngoscope. - : Wiley. - 0023-852X. ; 111:4 Pt 1, s. 669-680
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Journal article (peer-reviewed)abstract
- Purpose: A Swedish and Norwegian study was designed to examine health-related quality of life (HQL) in patients with head and neck cancer (head and neck) at diagnosis and during treatment and rehabilitation. The overall aim was to examine the impact on HQL at diagnosis depending on tumor location, stage, sex, and age (part I) and to describe HQL longitudinally and determine for which patients and during which period HQL deteriorated most (part II), This article presents the results at diagnosis. Method Patients with head and neck cancer at five hospitals in Sweden and Norway were consecutively requested to participate, They were asked to answer the EORTC QLQ-C30 and QLQ-H&N35 (the European Organization for Research and Treatment of Cancer, Core 30 questionnaire and head and neck cancer module) repeatedly during I year. A total of 357 patients (mean age, 63 y; 72% males) were included, Results: Patients with different tumor locations all had their special problems at diagnosis, for example, those with tumors in the larynx with communication, those with oral tumors with pain, and those with pharyngeal tumors with nutrition and pain. The patients with hypopharyngeal cancer reported the worst HQL. Stage appeared to have the strongest impact on HQL. Patients with a more advanced tumor stage reported significantly worse HQL scores for 24 of 32 variables reflecting functioning or problems. The females scored worse than the males for some areas, in particular, emotional functioning. The older patients scored significantly better for emotional and social functioning than patients <65 years but worse for physical functioning and various symptoms. The traditional way of grouping the tumor locations into oral, pharyngeal, laryngeal, and "other" tumors (salivary gland, sinus and nose, and unknown primary) was tested from a HQL point of view and found to be consistent. Conclusions: The chosen questionnaires differentiated between different sites of head and neck cancer at diagnosis. Tumor stage had the most powerful impact on HQL score.
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| 2. |
- Hammerlid, Eva, et al.
(author)
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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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In: Otolaryngology: Head and Neck Surgery. - 0194-5998. ; 116:6, s. 666-673
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Journal article (peer-reviewed)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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| 4. |
- Ahlner-Elmqvist, Marianne, et al.
(author)
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Characteristics and implications of attrition in health-related quality of life studies in palliative care
- 2009
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In: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 23:5, s. 432-440
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Journal article (peer-reviewed)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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| 5. |
- Ahlner-Elmqvist, Marianne, et al.
(author)
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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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In: Journal of Pain and Symptom Management. - : Elsevier Inc.. - 0885-3924 .- 1873-6513. ; 36:3, s. 217-227
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Journal article (peer-reviewed)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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| 6. |
- Ahlner Elmqvist, Marianne, et al.
(author)
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Health-related quality of life during the last three months
- 2009
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In: Supportive Care in Cancer. - : Springer-Verlag New York. - 0941-4355 .- 1433-7339. ; 17:2, s. 191-198
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Journal article (peer-reviewed)abstract
- 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.
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| 7. |
- Ahlner-Elmqvist, Marianne, et al.
(author)
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Health-related quality of life during the last three months of life in patients with advanced cancer
- 2009
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In: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 17:2, s. 191-198
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Journal article (peer-reviewed)abstract
- 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. 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. 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. 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.
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| 8. |
- Ahlner-Elmqvist, Marianne, et al.
(author)
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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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In: Palliative Medicine. - : Arnold Schönberg Center. - 0269-2163 .- 1477-030X. ; 18:7, s. 585-593
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Journal article (peer-reviewed)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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| 9. |
- Ahlner-Elmqvist, Marianne
(author)
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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
- 2008
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Doctoral thesis (other academic/artistic)abstract
- 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.
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| 10. |
- Bjordal, K, et al.
(author)
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A 12 country field study of the EORTC QLQ-C30 (version 3.0) and the head and neck cancer specific module (EORTC QLQ-H&N35) in head and neck patients
- 2000
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In: European Journal of Cancer. - 1879-0852. ; 36:14, s. 1796-1807
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Journal article (peer-reviewed)abstract
- This study tests the reliability and validity of the European Organization for Research and Treatment of Cancer (EORTC) head and neck cancer module (QLQ-H&N35) and version 3.0 of the EORTC Core Questionnaire (QLQ-C30) in 622 head and neck cancer patients from 12 countries. The patients completed the QLQ-C30, the QLQ-H&N35 and a debriefing questionnaire before antineoplastic treatment or at a follow-up. 232 patients receiving treatment completed a second questionnaire after treatment. Compliance was high and the questionnaire was well accepted by the patients. Multitrait scaling analysis confirmed the proposed scale structure of the QLQ-H&N35. The QLQ-H&N35 was responsive to differences between disease status, site and patients with different Karnofsky performance status, and to changes over time. The new physical functioning scale (with a four-point response format) of version 3.0 of the QLQ-C30 was shown to be more reliable than previous versions. Thus, the QLQ-H&N35, in conjunction with the QLQ-C30, appears to be reliable, valid and applicable to broad multicultural samples of head and neck cancer patients.
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