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Mogens Groenvold

Publications and source records attributed to Mogens Groenvold.

At least 19 recordsLinked to original sources

Breast cancer patients on adjuvant chemotherapy report a wide range of problems not identified by health-care staff.

BACKGROUND: Adjuvant chemotherapy for primary breast cancer is associated with significant side effects. The aims of this study were (1) to compare health-related quality of life (HRQL) in patients undergoing adjuvant chemotherapy to patients not on chemotherapy and (2) to compare these results against a survey investigating health-care professionals' knowledge of HRQL. METHODS: Patients on adjuvant cyclophosphamide, methotrexate, fluoracil chemotherapy were compared to 'low-risk' patients not on chemotherapy ('control group'). A questionnaire including the EORTC QLQ-C30, the Hospital Anxiety and Depression Scale (HADS), and the DBCG 89 Questionnaire was administered six times during a 2-year period. Forty-six experienced health-care professionals were asked which quality-of-life issues they thought were affected by adjuvant chemotherapy. RESULTS: After 2 years, 159 of 242 patients on chemotherapy and 148 of 199 patients in the control group were alive and recurrence-free and had completed all questionnaires. Worse HRQL during chemotherapy was seen, as had been previously suggested, for 23 of 30 variables. A number of the health-care professionals had not indicated patients to have these side effects. Several side effects persisted after the chemotherapy. CONCLUSIONS: This study provides the most comprehensive description of HRQL in adjuvant therapy to date. The discrepancy between patients and doctors/nurses suggests that patients have been insufficiently informed about the impact of chemotherapy on quality of life. The results of this study provide a basis for information that can be given to patients, and indicate that the care offered to patients in chemotherapy should seek to prevent, identify, and alleviate a very broad range of problems.

Adult↗

Health-related quality of life in long-term breast cancer survivors: nationwide survey in Denmark.

AIM: To investigate health-related quality of life (HRQOL) in a nationally representative sample of long-term breast cancer survivors (BCS) in Denmark. PARTICIPANTS AND METHODS: An age-stratified random sample of 2,000 female BCS > or = 5 years after primary surgery without recurrence was drawn from the Danish Breast Cancer Cooperative Group register, which is representative regarding long-term BCS in Denmark, and compared with 3,104 women of the nationally representative Danish Health and Morbidity Survey 2000. The Short Form-36 questionnaire assessed HRQOL and its association with BCS' sociodemography, type of surgery, systemic therapy, radiotherapy, time since operation, receptor status, and low/high risk protocol. RESULTS: The response rate was 79%. BCS tended to rate HRQOL better than the general female population. BCS reported significantly less "bodily pain" (P < 0.0001), better "general health" (P < 0.0001), but worse "mental health" (P < 0.0001). Age interacted significantly with four other subscales (P < 0.05): Younger BCS reported worse HRQOL than equally aged women of the general population, while older BCS reported better HRQOL. Poor HRQOL was significantly associated with being single (all subscales: P < 0.05), short education (all subscales: P < 0.05, except "social function"), and high body mass index ("physical function", "role physical": P < 0.05). Breast cancer (low/high risk, receptor status) and treatment did not affect HRQOL. CONCLUSION: HRQOL was similar between BCS and women of the general population. Potential long-term effects of breast cancer (low/high risk, receptor status) and treatment did not seem to impact HRQOL. However, predictors for worse HRQOL in BCS were being single, and having a short education.

Adolescent↗

Expectations to and evaluation of a palliative home-care team as seen by patients and carers.

OBJECTIVES: Although the number of palliative home-care teams is increasing, knowledge of what patients and principal informal carers expect from a home-care team is sparse. We aimed to elucidate this as well as evaluate a home-care team. PATIENTS AND METHODS: Individual semi-structured interviews with nine patients and six carers before receiving home care and 2-4 weeks after. In total, 26 interviews were conducted. Interviews were analysed with Template Analysis. Peer debriefing was performed. MAIN RESULTS: Patients and carers expected the team members to have specialised knowledge in palliative care and to improve their sense of security being at home. They also expected respite for carers and activities for patients. They evaluated the team positively but missed respite for carers and 24-h on-call service. CONCLUSIONS: Patients and carers found the home-care team essential to their sense of security being at home. Primary health care professionals must receive any necessary training outside patients' homes. Offering respite for carers and 24-h on-call service would be an improvement.

Adult↗

Assessing health-related quality of life in palliative care: comparing patient and physician assessments.

It is often difficult to recruit patients for palliative care studies and severe attrition must be expected resulting in biased findings. This may be avoided if equivalent information could be obtained from sources other than the patients. Therefore, we investigated whether physician assessments can be used to evaluate the patients' health-related quality of life (HRQOL). Patient and physician assessments of the patients' HRQOL were obtained once a week for up to 13 weeks using EORTC QLQ-C30 items. The agreement between patients and physicians at first contact (N=115) and for the following 13 weeks combined (total N=263) was investigated. Significant differences between patient and physician assessments were observed for all HRQOL domains assessed. Physicians reported patients to have fewer problems/symptoms than patients did for all HRQOL domains except for physical and social functioning. The agreement between patients and physicians was poor. Using physician assessments may bias findings and cannot be recommended as a substitute for patient self-assessment in palliative care.

Adult↗

Chemotherapy versus ovarian ablation as adjuvant therapy for breast cancer: impact on health-related quality of life in a randomized trial.

BACKGROUND: Ovarian ablation is an effective adjuvant therapy for primary breast cancer but little is known about its quality of life impact relative to the more widely used adjuvant chemotherapy. This randomized study compared quality of life outcomes of adjuvant ovarian ablation versus cyclophosphamide, methotrexate, fluoracil (CMF) chemotherapy. METHODS: The Danish Breast Cancer Cooperative Group (DBCG) trial 89-b randomized premenopausal patients with receptor-positive, primary breast cancer between nine cycles of CMF chemotherapy given every 3 weeks and ovarian ablation by oophorectomy. In total, 317 randomized patients were invited to take part in a longitudinal quality of life study with assessments at 1, 3, 5, 9, 15, and 24 months after randomization. The questionnaire included the EORTC QLQ-C30, the Hospital Anxiety and Depression Scale, and additional items assessing potential symptoms not included in the standard instruments. RESULTS: After 2 years, 260 women were alive and recurrence-free, and 196 of these (75%) had completed all six questionnaires. Overall, patients in the chemotherapy group had more symptomatology at the first three assessments (i.e., during the 6 months treatment period), except for hot flushes/sweats. There were few differences between groups at later assessments. In chemotherapy patients, the likelihood of preserving ovarian function decreased steeply with increasing age. CMF chemotherapy and ovarian ablation have similar impact on recurrence and survival. CONCLUSION: Chemotherapy had more negative impact on health-related quality of life but preserved ovarian function in some younger patients.

Adult↗

Multidimensional computerized adaptive testing of the EORTC QLQ-C30: basic developments and evaluations.

OBJECTIVE: Self-report questionnaires are widely used to measure health-related quality of life (HRQOL). Ideally, such questionnaires should be adapted to the individual patient and at the same time scores should be directly comparable across patients. This may be achieved using computerized adaptive testing (CAT). Usually, CAT is carried out for a single domain at a time. However, many HRQOL domains are highly correlated. Multidimensional CAT may utilize these correlations to improve measurement efficiency. We investigated the possible advantages and difficulties of multidimensional CAT. STUDY DESIGN AND SETTING: We evaluated multidimensional CAT of three scales from the EORTC QLQ-C30: the physical functioning, emotional functioning, and fatigue scales. Analyses utilised a database with 2958 European cancer patients. RESULTS: It was possible to obtain scores for the three domains with five to seven items administered using multidimensional CAT that were very close to the scores obtained using all 12 items and with no or little loss of measurement precision. CONCLUSION: The findings suggest that multidimensional CAT may significantly improve measurement precision and efficiency and encourage further research into multidimensional CAT. Particularly, the estimation of the model underlying the multidimensional CAT and the conceptual aspects need further investigations.

Adult↗

Symptom priority and course of symptomatology in specialized palliative care.

The study aim was to explore which symptoms/problems cancer patients in palliative care consider most distressing, and to investigate how prioritization at first contact was associated with patient-assessed symptom intensity and change in intensity over time. Initially, 175 patients named and prioritized their five most distressing symptoms. Weekly, they completed the following self-assessment questionnaires: European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-C30, Edmonton Symptom Assessment System, and the Hospital Anxiety and Depression Scale. Initial symptom intensity scores and weekly changes were calculated and compared with prioritization of the same symptom. Pain, fatigue, physical function, appetite, nausea/vomiting, dyspnea, and depression were the symptoms most often prioritized. Priority was associated with initial scoring of pain, appetite, nausea/vomiting, dyspnea, constipation, depression, and anxiety, but not with fatigue, physical function, role function, or inactivity. Priority was associated with change in symptom intensity for pain, reduced appetite, nausea/vomiting, and constipation. Symptom prioritization may be a useful guide to choice of treatment as well as to longitudinal symptom evaluation.

Adult↗

Multidimensional measurement of fatigue in advanced cancer patients in palliative care: an application of the multidimensional fatigue inventory.

To investigate the level, dimensionality, and correlates associated with fatigue in patients receiving specialist palliative care, 278 advanced cancer patients referred to a department of palliative medicine during a 2-year period were asked to complete the Multidimensional Fatigue Inventory (MFI-20), a self-assessment questionnaire measuring five dimensions of fatigue, and the Hospital Anxiety and Depression Scale. Of 267 eligible patients, 130 (49%) participated. Mean fatigue scores (0-100 scale) were very high, especially for general fatigue (81), physical fatigue (87), and reduced activity (85). Only some of the MFI-20 subscales were significantly correlated. Fatigue was not correlated with sociodemographic factors. Depressed patients had higher scores on all five subscales except physical fatigue. Anxious patients had higher levels on the mental fatigue subscale only. The variation in fatigue explained by depression varied markedly (4%-31%) among subscales. Fatigue levels were very high in this population. The lack of significant correlation between some subscales indicates that they measure different aspects of fatigue. This is also supported by the differences in associations between fatigue subscales and depression and anxiety.

Adult↗

Quality of life in patients with benign thyroid disorders. A review.

The importance of patient-reported outcomes such as health-related quality of life (HRQL) in clinical research is increasingly acknowledged. In order to yield valid results, the measurement properties of HRQL questionnaires must be thoroughly investigated. One aspect of such a validation process is the demonstration of content validity, i.e. that the questionnaire covers all relevant aspects. We review studies reporting on consequences of thyroid disorders and present the frequency of identified aspects, both overall HRQL issues and classical thyroid symptoms, in order to evaluate which issues are relevant for patients with thyroid diseases. Furthermore, existing questionnaires for thyroid patients are reviewed. A systematic search was performed in the Medline, Cinahl and Psycinfo databases and the reference lists of the relevant articles were hand-searched. Seventy-five relevant studies were identified. According to these studies, patients with untreated thyroid disease suffer from a wide range of symptoms and have major impairment in most areas of HRQL. Furthermore, the studies indicate that impairments in HRQL are also frequent in the long term. Six HRQL questionnaires for thyroid patients were identified. Generally, data supporting the validity of these questionnaires were sparse. According to the available literature, the quality of life of thyroid patients is substantially impaired over a wide range of aspects of HRQL in the untreated phase and continues to be so in many patients also in the long term. Studies systematically exploring the relative importance of these various aspects to thyroid patients are lacking, as is a comprehensive, validated thyroid-specific HRQL questionnaire.

Graves Ophthalmopathy↗

The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care.

This study aimed at developing a shortened version of the EORTC QLQ-C30, one of the most widely used health-related quality of life questionnaires in oncology, for palliative care research. The study included interviews with 41 patients and 66 health care professionals in palliative care to determine the appropriateness, relevance and importance of the various domains of the QLQ-C30. Item response theory methods were used to shorten scales. Patients and health care professionals rated pain, physical function, emotional function, fatigue, global health status/quality of life, nausea/vomiting, appetite, dyspnoea, constipation, and sleep as most important. Therefore, these scales/items were retained in the questionnaire. Four scales were shortened without reducing measurement precision. Important dimensions not covered by the questionnaire were identified. The resulting 15-item EORTC QLQ-C15-PAL is a 'core questionnaire' for palliative care. Depending on the research questions, it may be supplemented by additional items, modules or questionnaires.

Activities of Daily Living↗

Item response theory was used to shorten EORTC QLQ-C30 scales for use in palliative care.

BACKGROUND AND OBJECTIVE: The goal was to develop a shortened version of the EORTC QLQ-C30 for use in palliative care. We wanted to keep as few items as possible in each scale while still being able to compare results with studies using the original scales. We examined the possibilities of shortening the physical functioning, cognitive functioning, fatigue, and nausea and vomiting scales. STUDY DESIGN AND SETTING: The shortening was based on 2,366 (physical functioning) and 10,815 (three other scales) observations, respectively. We used item response theory to construct scoring algorithms for predicting scores on the original scales. RESULTS: Evaluations showed that a three-item physical scale, a two-item fatigue scale, and a one-item nausea or vomiting scale predicted the scores on the original scales with excellent agreement and had measurement abilities similar to the original scales with no loss or only a little loss in power to detect group differences. The results of the cognitive functioning scale indicated problems when predicting scores from a shortened version. CONCLUSION: Given the favorable results for the physical functioning, fatigue, and nausea or vomiting scales we expect that the shortened versions of these scales will be included in the abbreviated version of the EORTC QLQ-C30 for palliative care.

Cognition↗

A longitudinal study of palliative care: patient-evaluated outcome and impact of attrition.

BACKGROUND: The current article evaluated the course of patient-assessed symptomatology in specialized palliative care and tested for bias due to patient attrition in measures of initial symptomatology and treatment outcome. METHODS: Over 2 years, 267 consecutive, eligible patients were referred to a department of palliative care. Upon arrival, 201 patients consented to participate in a questionnaire-based evaluation of quality of life (QOL). Of these, 175 patients participated, and 142, 119, and 95 participated in the study at 1, 2, and 3 weeks, respectively. Weekly, participants completed the self-assessment questionnaires European Organization for Research and Treatment of Cancer QLQ-C30, Edmonton Symptom Assessment System, Hospital Anxiety and Depression Scale, and Multidimensional Fatigue Inventory. Physicians used the Mini Mental State Examination to evaluate cognitive function. Changes from the initial symptom scores for each week were calculated. Initial scoring and change after 1 week were tested for association with completion level, i.e., whether the patient completed questions at 1, 2, 3, or 4 time points. RESULTS: High initial symptom intensity and significant improvements over time were observed for pain, lack of appetite, nausea/vomiting, sleeplessness, constipation, and overall QOL/well-being. For some symptoms, initial scores were significantly higher in patients who dropped out, but the changes over the first week were not significantly different between completion levels for any symptom. CONCLUSIONS: Improvement in symptom intensity was identified. Dropout was associated with higher initial symptomatology but not with poorer outcome of palliative treatment.

Adult↗

Scoring based on item response theory did not alter the measurement ability of EORTC QLQ-C30 scales.

BACKGROUND AND OBJECTIVES: Most health-related quality-of-life questionnaires include multi-item scales. Scale scores are usually estimated as simple sums of the item scores. However, scoring procedures utilizing more information from the items might improve measurement abilities, and thereby reduce the needed sample sizes. We investigated whether item response theory (IRT)-based scoring improved the measurement abilities of the EORTC QLQ-C30 physical functioning, emotional functioning, and fatigue scales. METHODS: Using a database of 13,010 subjects we estimated the relative validities of IRT scoring compared to sum scoring of the scales. RESULTS: The mean relative validities were 1.04 (physical), 1.03 (emotional), and 0.97 (fatigue). None of these were significantly larger than 1. Thus, no gain in measurement abilities using IRT scoring was found for these scales. Possible explanations include that the items in the scales are not constructed for IRT scoring and that the scales are relatively short. CONCLUSION: IRT scoring of the three longest EORTC QLQ-C30 scales did not improve measurement abilities compared to the traditional sum scoring of the scales.

Adult↗

Quality of life in patients with skeletal metastases of prostate cancer and status prior to start of endocrine therapy: results from the Scandinavian Prostate Cancer Group Study 5.

OBJECTIVES: Prostate cancer (PC) is a highly lethal neoplastic disease affecting the physical, mental and social well-being of patients, i.e. their quality of life (QOL). Patients suffering from metastatic PC are faced with serious decisions regarding treatment strategies. Therefore, QOL information has become a crucial element of decision making in this group of patients. The first objective of this study was to describe QOL in a group of patients diagnosed with metastatic PC and skeletal metastases. At the time of evaluation the patients had not received any treatment but were evaluated before entering a study of androgen-modulating therapy (the Scandinavian Prostate Cancer Group study 5). The second objective was to identify demographic and disease-related factors affecting QOL. MATERIAL AND METHODS: A total of 917 patients with metastatic PC were evaluated using a well-described and validated questionnaire [European Organization for Research and Treatment of Cancer Quality-of-Life Questionnaire-C30 (EORTC QLQ-C30)]. The characteristics of the PC were noted, and simultaneously patients were evaluated with respect to use of analgesics, pain and performance status using a scoring system. Biochemical tests were performed when patients entered the study. A multivariate regression analysis was performed to analyse the correlations between QOL scores, patient demographics and disease-related data. RESULTS: The patients reported QOL scores significantly lower than those in the background population. Pain and fatigue were pronounced, whereas dyspnoea, insomnia, loss of appetite, constipation and diarrhoea were less prominent. Patients with high tumour grades, high PSPA scores (the sum of the pain score, the performance status and the use of analgesics) and those using analgesics had significantly lower QOL scores than the other patients. CONCLUSIONS: Patients with metastatic PC have reduced QOL. Our findings are in line with those of other studies of QOL among patients with this disease as evaluated by means of the EORTC QLQ-C30 questionnaire. Baseline data from studies like this provide important information when treatment modalities for PC are evaluated.

Aged↗

Cooperating with a palliative home-care team: expectations and evaluations of GPs and district nurses.

BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced by 91 %, mainly due to improvement in symptom management, 'security', and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory. Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance cooperation.

Attitude of Health Personnel↗

Early-stage cervical carcinoma, radical hysterectomy, and sexual function. A longitudinal study.

BACKGROUND: Limited knowledge exists concerning the impact of radical hysterectomy (RH) alone on the sexual function of patients with early-stage cervical carcinoma. The authors investigated the longitudinal course of self-reported sexual function after RH. METHODS: The current study was comprised of 173 patients with lymph node-negative, early-stage cervical carcinoma who had undergone RH and pelvic lymphadenectomy. They were assessed prospectively using a validated self-assessment questionnaire 5 weeks and 3 months, 6 months, 12 months, 18 months, and 24 months after RH. Results were compared with an age-matched control group from the general population. RESULTS: Compared with control women, patients experienced severe orgasmic problems and uncomfortable sexual intercourse due to a reduced vaginal size during the first 6 months after RH, severe dyspareunia during the first 3 months, and sexual dissatisfaction during the 5 weeks after RH. A persistent lack of sexual interest and lubrication were reported throughout the first 2 years after RH. Long-term lack of sexual interest and insufficient vaginal lubrication were confirmed by the patient's self-reported changes 12 months after RH compared with before the cancer diagnosis and by a pre-post comparison within patients. However, most of the patients who were sexually active before their cancer diagnosis were sexually active again 12 months after surgery (91%), although with a decrease in sexual frequency reported. CONCLUSIONS: RH had a persistent and negative impact on patients' sexual interest and vaginal lubrication whereas the majority of other sexual and vaginal problems disappeared over time. Sexual and vaginal problems in the short-term and long-term after RH should be discussed with the patient before and after surgery.

Adult↗

Validation of a questionnaire for self-assessment of sexual function and vaginal changes after gynaecological cancer.

The Sexual function-Vaginal changes Questionnaire (SVQ), was developed to investigate sexual and vaginal problems in gynaecological cancer patients. The instrument consists of 20 core items, measuring sexual interest, lubrication, orgasm, dyspareunia, vaginal dimensions, intimacy, sexual problems of partner, sexual activity, sexual satisfaction, and body image. Seven additional items assessing current levels of sexual and vaginal problems compared to pre-diagnosis are intended to be used only once in longitudinal studies. The SVQ was validated in two ways: first, the comprehensibility of each item was investigated through combined quantitative and qualitative assessment of patient-observer agreement in 75 gynaecological cancer patients, second, multitrait analyses and principal component analyses were applied to responses from 257 patients with cervical cancer to investigate the scale properties. The level of agreement between the patients' and the observer's ratings was high (median overall agreement 0.84, range 0.46-1.00; median kappa: 0.80, range 0.52-1.00). From the 10 items applicable to all patients, three scales were hypothesized: intimacy, sexual interest and global sexual satisfaction. For sexually active respondents an additional two scales were hypothesized: vaginal changes and sexual functioning. The psychometric analyses confirmed these scales. The internal consistency of the scales ranged 0.76-0.83 (Cronbach's alpha). The study supports the validity and reliability of the SVQ.

Adult↗