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Background: The purpose of this study was to determine the prevalence of fatigue and the course of fatigue as a function of chemotherapy in breast cancer patients undergoing adjuvant chemotherapy., Patients and Methods: In a prospective cohort study, a sample of 157 patients with breast cancer were interviewed, using the Rotterdam Symptom Checklist and the Multidimensional Fatigue Inventory, at the first, third and fifth cycle of adjuvant chemotherapy, as well as 4 and 12 weeks after the last cycle of adjuvant chemotherapy. Patients were treated with either a doxorubicin-containing schedule, or cyclophosphamide, methotrexate and 5-fluorouracil (CMF)., Results: The courses of general and physical fatigue are to a large extent similar. After the last cycle of chemotherapy, the CMF group reported a significant increase in fatigue, which was followed by a significant reduction. In the doxorubicin group a significant increase in fatigue was only seen during the first cycles of chemotherapy. The fatigue experienced at the first and the last measurements do not differ significantly., Conclusions: The prevalence of fatigue increased significantly after the start of chemotherapy. After chemotherapy treatment the prevalence rate seemed to decline. A different impact of chemotherapy on the course of fatigue was found. In the doxorubicin group a direct increase in fatigue was found. In the CMF group a moderate direct increase occurred, followed by a delayed strong increase. An increase in fatigue was associated with a decrease in daily functioning. At all measurement occasions fatigue was affected by type of operation, such that women with a mastectomy were more fatigued than women that underwent a lumpectomy. Receiving radiotherapy also led to an increase in fatigue. With this knowledge breast cancer patients can be better informed about what they can expect. Further research should include interventions addressing how to reduce or cope with fatigue during as well as after receiving adjuvant chemotherapy.

This article addresses the issues in measuring pain in critically ill children, provides a comprehensive review of the pain measures for children aged between 0 and 3 years, and discusses their applicability to this group of children. When children are critically ill, pain can only exacerbate the stress response that already exists, to the extent that homeostasis cannot be maintained. Severity of illness is thus likely to affect physiologic and behavioural pain responses that would normally be demonstrated in healthy children. The problem of differentiating pain from other constructs adds to the complexity of assessing pain in non-verbal children. A pain measure to be useful clinically must be adapted to the developmental age of the target population. Search of electronic databases and other electronic sources was supplemented by hand review of relevant journals to identify published and unpublished pain measures for use in children aged between 0 and 3 years. Twenty eight pain measures were identified in the literature; 11 for neonates only, 11 for children aged between 0 and 3 years, and six for children more than 12 months. These measures vary in relation to their psychometric properties, clinical utility and the context in which the study was performed. These measures may not be suitable for the critically ill young child, because the items included were derived from observations of healthy or moderately sick children, and may not reflect pain behaviour in those who are critically ill. It is therefore recommended to develop new pain scales for this population of compromised children.

This article describes the results of a grounded theory study among terminally ill patients (with a life expectancy of less than three months) at home (n = 13, aged 39-83). The most commonly recurring theme identified in the analysis is 'directing', in the sense of directing a play. From the perspectives of patients in our study, 'directing' concerns three domains: 1) directing one's own life; 2) directing one's own health and health care; and 3) directing things related to beloved others (in the meaning of taking care of beloved ones). The patient's directing is affected by impeding and facilitating circumstances: the patient's needs and problems in the physical, psychological and existential/spiritual domain, and the support by family members and providers. Supporting patients and families, stimulating the patients' directing, giving attention to all domains of needs and counselling patients' families in the terminal phase are issues that need attention and warrant further investigation.

The objective of this study was to gain insight into the patients' decision-making for migraine and chronic daily headache management. Patients were recruited by theoretical sampling in Surrey (UK). Semi-structured and tape-recorded interviews (n = 13) were conducted, transcribed verbatim, coded and analysed according to the grounded theory methodology. Thirteen patients (8 migraine and 5 chronic daily headache) described their management. All patients employed multiple behaviours to manage their headaches. From the patients' descriptions emerged their decision-making. Based on experience, perceptions and new information, the decision-making process involved four stages: headache severity, evaluation, decision making and behaviours. Although the participants were passive with regards to certain management strategies, overall they were actively involved in treating and preventing their headaches. Furthermore, they were active decision-makers in choosing appropriate management. Migraine and chronic daily headache patients are actively involved in managing their headaches. They are key decision-makers and should not be overlooked as a resource for effective management.

This paper reports on a grounded theory interview-based study with 13 family members aged 28-80 years caring for terminally ill people at home (with a life expectancy of 3 months or less) in the Netherlands. The project was approved by the ethics committee of the Maastricht University Hospital. The aim of this study was to explore the experiences of family caregivers, their needs for home care, and which health services they receive. Data were analysed using the constant comparative method. 'Vulnerability' was identified as the core category. Caring for a terminally ill person at home requires continuous balancing between care burden and capacity to cope. Whether or not the carer will succeed in keeping in optimum balance is dependent on a number of factors impinging on the caregiver's vulnerability. Care burden, restricted activities, fear, insecurity, loneliness, facing death, lack of emotional, practical and information-related support were identified from the data as factors having the potential to increase the caregiver's vulnerability, and may be risk factors for fatigue and burnout. Continuing previous activities, hope, keeping control, satisfaction and good support are factors which may decrease the caregiver's vulnerability, and may protect against fatigue and burnout. The experiences of the caregivers in our study showed that the support from informal and professional caregivers was not sufficient. Education and practical tools may make professionals more sensitive for the vulnerable position of family caregivers, even when these caregivers do not show their vulnerability.

The purpose of the present study was to assess the prevalence of pressure ulcers and the use of Dutch guidelines for the prevention and treatment of pressure ulcers. A survey of 16,344 patients in 89 health care institutions on 1 day showed a mean prevalence of pressure ulcers of 23.1%. It was found that Dutch guidelines on some aspects of prevention and treatment of pressure ulcers were not being followed. Only 53% of the patients who should have been positioned on a support surface were positioned on such a device. Fewer than one-third of the patients who should have been repositioned, should have received nutritional support, or should have been educated received these interventions, and only 33.6% of all pressure ulcers were dressed as recommended. More attention to the dissemination and implementation of the guidelines is needed to reduce this high prevalence of pressure ulcers., (Copyright 2002 Wiley Periodicals, Inc.)

The aim of this study was to describe the Quality of Life and pain coping strategies of school children in relation to headache severity. We conducted a cross-sectional study in 2815 children between the age of 9 and 17 years, who filled out Waters' Headache Questionnaire (WHQ), the Paediatric Pain Assessment Tool (PPAT), the Quality of Life Headache in Youth (QLH-Y) questionnaire and the Pain Coping Questionnaire (PCQ) in the class-room setting. Weekly headaches were reported by 22% of the sample. Low, medium, and high headache severity groups were constructed, based on headache frequency, duration and intensity criteria. Results show that children with the highest headache severity report the lowest Quality of Life in general and the lowest Quality of Health, as well as the most problems with regard to physical functioning, impact of headache on daily and leisure activities, physical symptoms other than headache, and social functioning at home. With regard to using pain coping strategies, children with the most severe headaches seek more social support, they internalize and externalize more, they use less behavioural and cognitive distraction techniques, and seek information less., (Copyright 2002 European Federation of Chapters of the International Association for the Study of Pain. Published by Elsevier Science Ltd.)

The aim of this study was to evaluate the prevalence and severity of children's pain at home following (adeno)tonsillectomies. The subjects were parents of 161 children (86 boys, 75 girls) undergoing myringotomies, adenoidectomies and (adeno)tonsillectomies. The mean age of the children was 5.5 years (SD=2.4; range 1-14). Parents were asked to assess the child's average pain on the day of operation and 7 days after the operation, using a 100 mm Visual Analogue Scale (VAS). Parents from (adeno)tonsillectomy patients were also interviewed by phone on day 7.The mean VAS pain intensity scores by period (day of operation until 7th day after operation) differed between the myringotomy (3.2), adenoidectomy (10.6), and (adeno)tonsillectomy (22.1) group (F(2,133)=31.65; p<0.001). The VAS ratings were highest for the tonsillectomy group (p<0.001). There was a trend that pain intensity scores for adenoidectomies were significantly higher than scores for myringotomies (p=0.07). In the interviews, 81% of the parents stated that their child suffered pain at home. However, this was not necessarily a reason to administer an analgesic. Furthermore, parents reported pain-related problems like problems regarding eating, fluid intake, vomiting and sleep disturbance. Finally, 67% of the children at home recalled severe pain experience in the hospital. It was concluded that especially following (adeno)tonsillectomies children suffer clinically significant pain at home and that the management of pain and related problems needs to be clearly improved., (Copyright 2002 European Federation of Chapters of the International Association for the Study of Pain. Published by Elsevier Science Ltd. All rights reserved.)

Although reports suggest that beliefs about pain play an important role in the adjustment and pain experience of non-cancer patients, the impact of cognitions on the pain experience is unknown in cancer patients. This study examined the factor structure, reliability, and validity of the Pain Cognition List-Experimental version, a measure developed to assess patients' self-statements about pain and the extent to which patients are effective in dealing with the pain. The Pain Cognition List-Experimental version was administered to 313 cancer patients during hospitalization. Confirmatory factor analysis was conducted to evaluate the adequacy of fit for the original five factors. Because of a failure to replicate the factors, exploratory factor analysis was conducted, finding the factors Pain Impact, Social Comparison, Acquiescence, and Outcome Efficacy. The internal consistency for the factor Pain Impact was high (r = 0.89), while the other three factors showed low reliability. The factor Catastrophizing, usually an important factor in non-cancer patients, did not emerge. No differences were found across sex. The factors Pain Impact and Acquiescence provided evidence for concurrent validity. Patients with district nursing showed higher scores on the factors Pain Impact and Acquiescence, and higher scores on Pain Impact and Acquiescence were associated with higher pain intensity scores. This study was an attempt to evaluate pain cognitions and beliefs in cancer patients. It is concluded that the Pain Cognition List for non-cancer patients cannot be easily used in cancer pain patients and that evaluation of pain cognitions in cancer patients is useful. Health care providers evaluating pain in cancer patients with chronic pain need to be aware of the impact pain cognitions have on patients' pain experience. Although more research is needed, measuring pain cognitions should be considered.

There is no 'gold standard' to assess the adequacy of pain treatment in cancer patients. The purpose of the study is to explore the Amsterdam Pain Management Index, a newly designed measure to evaluate the adequacy of cancer pain treatment, and to compare it with eight frequently used outcome measures. The Amsterdam Pain Management Index compares patients' Present Pain Intensity, Average Pain Intensity, and Worst Pain Intensity with a composite score of analgesics used, while correcting for what a patient considers as a tolerable level of pain. The eight frequently used outcome measure consisted of three Pain Intensity Markers, the Pain Relief Scale, the Patient Satisfaction Scale, and three Pain Management Indexes. In a randomized controlled trial, 313 cancer patients with a pain duration of at least 1 month were included and followed-up three times until 2 months postdischarge at home. The experimental group received a Pain Education Program, consisting of tailored pain information and instruction. Results showed that, except for the three Pain Management Indexes, the agreement between the measures was very low to moderate. The test of known-groups comparisons and equivalence between groups indicated that the Amsterdam Pain Management Index showed promising results. The Pain Intensity Markers and the Pain Relief Scale were limited in discriminating between groups, while the Patient Satisfaction Scale showed no differences between patient groups. Although it was possible for the Pain Management Indexes to distinguish between patient groups, the differences were not in the expected direction. The ability of the outcome measures to detect changes over time was clearly demonstrated by all outcome measures. Effects of the intervention were only found for the Amsterdam Pain Management Index and patients' Substantial Worst Pain score. Although support was provided for the use of the Amsterdam Pain Management Index, more research is warranted.

Dutch specialist asthma nurses run extramural and transmural nurse clinics for children with asthma. Extramural clinics are run under the responsibility and in the premises of a home care organization. Transmural clinics are run in an outpatient clinic in close collaboration and joint responsibility between home care organizations and hospitals. Effects of and differences between these clinics were determined by using a quasiexperimental design. Visiting a nurse clinic appears to result in a reduced information need and reduced use of health care services. Parents of asthmatic children visiting transmural nurse clinics appeared to have a lower information need than those attending extramural nurse clinics.

The aim of this study was to determine whether there has been an increase in headache prevalence in Dutch children and to compare headache characteristics of children with low, medium and high headache severity.A sample of 2358 schoolchildren between the ages of 10 and 17 years filled out Waters' Headache Questionnaire and the Paediatric Pain Assessment Tool. Results showed that 21% of the boys and 26% of the girls at elementary school, and 14% of the boys and 28% of the girls at high school reported weekly headaches. When compared to figures from a previous study in the Netherlands published in 1985, the prevalence of weekly headaches in 10-17-year-olds has increased by 6%. In boys at elementary school, the prevalence of headaches with a frequency of a few times a week has doubled. Children with low, medium and high headache severity differed with respect to all headache characteristics, i.e. pain quality, accompanying symptoms, warning signals, location, onset, impact of headache, family occurrence, perceived cause, medical consultation, and school absence., (Copyright 2001 European Federation of Chapters of the International Association for the study of pain.)

Objective: To investigate whether children and adolescents can recall prior headache complaints accurately and to study whether age, gender, headache severity, preferred coping strategies, depression, somatization, and trait anxiety are related to recall errors, causing recall bias., Methods: A retrospective headache questionnaire and a prospective 4-week headache diary were filled out by 181 children aged 9 to 16 years who experienced headache at least weekly. In addition, several other questionnaires were administered, measuring coping strategies, depression, somatization, and trait anxiety. Headache frequency, intensity, and duration, as scored on the questionnaire and the diary, were compared using Wilcoxon tests. Regression analyses were performed to study whether age, gender, headache severity, preferred coping strategies, depression, somatization, and trait anxiety can predict the size of differences between the diary and the questionnaire., Results: Compared with the diary, headache intensity and headache duration were overestimated on the questionnaire. At group level, median headache frequency as measured by the diary and the questionnaire was equal. Regarding headache frequency and headache intensity, age and headache severity were statistically related to errors in recall. For headache frequency, depression was also predictive of the size of recall error., Conclusions: Recall errors occur when children are asked to report their headaches on a retrospective questionnaire. As compared to a prospective diary, pain complaints are evaluated more negatively on a questionnaire. Other factors such as age, depression, and headache severity influence the way children and adolescents recall their headaches. To minimize bias, the use of a diary when studying recurrent headache complaints in children is recommended.

In this qualitative study stroke patients rehabilitating in nursing homes experienced an increase in their autonomy (particularly in self-determination, independence and self-care) in the last weeks before discharge. The change in autonomy was found to be related to regained abilities and self-confidence, and to patients' strategies (e.g. taking initiative, being assertive). The attitude of health professionals and family, and the nursing home could influence patient autonomy. Overprotection, paternalism, care routines and an inconsistent approach constrain autonomy. Conversely, attentiveness, tailored interventions and a respectful dialogue facilitate autonomy, like moderate instrumental and emotional support by the family. Nursing homes can enhance autonomy by minimizing care routines and by providing room for doing activities independently and privately. Attention to patient autonomy may improve patients' active participation in rehabilitation, quality of life, and autonomous living after discharge. Multidisciplinary guidelines based on the results may increase attention to the stroke patients' autonomy and stimulate a team approach.

Objective: The goal of this study was to determine the effects of a supportive educational nursing intervention on self-care abilities, self-care behavior, and quality of life of patients with advanced heart failure., Design: The study design was an experimental, random assignment., Setting: The study was located at the University Hospital in Maastricht, The Netherlands., Patients: The study included 179 patients (mean age 73 years, 58% men, New York Heart Association classification III and IV) admitted to a university hospital with symptoms of heart failure., Outcome Measures: Outcome measures included self-care abilities (Appraisal of Self-care Agency Scale), self-care behavior (Heart Failure Self-care Behavior Scale), 3 dimensions of quality of life (functional capabilities, symptoms, and psychosocial adjustment to illness), and overall well-being (Cantril's ladder of life)., Intervention: The intervention patients received systematic education and support by a nurse in the hospital and at home. Control patients received routine care., Results: Self-care abilities did not change as a result of the intervention, but the self-care behavior in the intervention group was higher than the self-care behavior in the control group during follow-up. The effect of the supportive educational intervention on quality of life was limited. The 3 dimensions of quality of life improved after hospitalization in both groups, with no differences between intervention and control group as measured at each follow-up measurement. However, there was a trend indicating differences between the 2 groups in decrease in symptom frequency and symptom distress during the 9 months of follow-up., Conclusion: A supportive educational nursing intervention is effective in improving self-care behavior in patients with advanced (New York Heart Association class III-IV) heart failure; however, a more intensive intervention is needed to show effectiveness in improving quality of life.

This review article addresses first the different palliative care models currently in use. Studies addressing the effectiveness of the models used are briefly summarized. Special attention is further given to models developed and tested in palliative care in children. Finally, the problems and pitfalls encountered in evaluating palliative care services are highlighted and recommendations are made where further research is still warranted.

This article describes the results of a grounded theory study among stroke patients (N=17, aged 50-85) in rehabilitation wards in nursing homes. Patient autonomy (dimensions: self-determination, independence and self-care) increases during rehabilitation due to patient factors (conditions and strategies of patient) and environmental factors (nursing home and strategies of health professionals and family). During rehabilitation patients are in a state of transition regarding autonomy: patients need support to enhance autonomy, gradually regain autonomy, and thereby need less support. Although facilitating environmental factors were discovered, patients also experienced constraining factors regarding patient autonomy. Health professionals should give more attention to self-determination and independence; the nursing home should offer stroke patients more opportunities to do familiar activities autonomously.

Objectives: To clarify the concepts of coping with pain and quality of life (QoL) and to present a literature review of the strategies that children with recurrent headaches use to cope with their pain, the impact of recurrent headaches on children's QoL, and the influence of personal and situational variables on headache, coping, and QoL in children., Methods: The literature search encompassed published articles that were found by means of a CD-ROM search of MEDLINE (1966 to December 1998) and PsycLIT (1974 to December 1998) and the snowball method., Results: In pediatric headache research, only three studies have been found in which children report the use of various coping strategies, and only two studies considered QoL. Demographic factors and psychological variables such as depression, anger, and anxiety influence headache prevalence. The impact of headache-related variables such as headache type, severity, perceived cause, and prior experience on QoL has only been studied in adults., Conclusions: More research on coping and QoL is needed in pediatric headache. The conceptual model that is presented in this article may serve as a guide.

Objective: Recently a new form of nurse clinic for people with rheumatic diseases has been introduced into Dutch health care. This study gives insight into: (i) patients' perceptions about the quality and continuity of care given at these (transmural) nurse clinics; and (ii) specialized rheumatology nurses' and rheumatologists' perceptions about the quality and continuity of care in the clinics., Design: Validated measurement tools (QUOTE and QCC) were used, before and after patients visited a clinic, to determine patient perceptions about the quality and continuity of care. Semi-structured interviews with professionals were used to gather information about their perceptions., Setting: The study was carried out at five locations in The Netherlands where a home care organization and a general hospital collaborated closely and had joint responsibility for a transmural rheumatology nurse clinic., Study Participants: A total of 128 patients, six specialist rheumatology nurses and four rheumatologists., Intervention: Transmural nurse clinics for people with rheumatic diseases., Results: In general, patients were positive about the quality and continuity of care given at the clinics. Some continuity aspects, like the presence of a locum nurse and providing the locum with sufficient information could be improved. Professionals were positive about the information given at the clinics, which is additional to the information given by a rheumatologist. Professionals were less positive about some of the clinics' preconditions., Conclusion: In this study, a control group (e.g. patients who received standard rheumatologist care) was not available. However, in comparison with patients' experiences of standard medical care in other (comparable) research, patients' experiences in this study were very positive. It was concluded that Dutch transmural nurse clinics, to a large extent, meet patients' and professionals' expectations and were a positive development in the care of rheumatic patients.

'Transmural care' can be defined as patient-tailored care provided on the basis of close collaboration and joint responsibility between hospitals and home care organizations. One form of transmural care is transmural nurse clinics for chronically ill. This study describes 62 transmural nurse clinics in the Netherlands. It was established that most of these nurse clinics are held by a specialized community nurse at a hospital outpatient clinic. The principal tasks of the specialized nurse at the clinic are providing illness-related information and supporting patients in dealing with the illness. Only a few unpublished evaluations of Dutch transmural nurse clinics have been conducted. Future research has to provide more insight into the impact of transmural nurse clinics on the quality and continuity of care.

To what degree can facial expression scales help children differentiate between the sensory and emotional aspects of the pain experience? This study examined the relationship between children's ratings on the Faces Pain Scale (an intensity measure), the Facial Affective Scale (an affective measure), and a paired mechanical visual analogue (MVAS) method for measuring the intensity and unpleasantness of pain. It was predicted that ratings on the Faces Pain Scale should correlate best with the MVAS measure of pain intensity rather than unpleasantness. Likewise, ratings on the Facial Affective Scale should correlate best with the MVAS measure of pain unpleasantness (assumed to reflect an emotional dimension) rather than intensity. Eighty children scheduled for blood sampling were selected in two age groups: 4 to 6, and 7 to 10 years. Children rated needle pain using each pain scale. As hypothesized, ratings on the Faces Pain Scale correlated more highly with the MVAS ratings for intensity (r =0.77) than for unpleasantness (r =0.52). A smaller reverse finding was confirmed for the Facial Affective Scale which correlated more highly with the MVAS for unpleasantness (r =0.64) than for intensity (r =0.51). Factor analysis indicated that 'pain dimension' (intensity vs affect) was a relatively weak factor as compared with shared instrument variance (two MVAS vs two face scales). No systematic age effects were observed. In conclusion, the Faces Pain Scale and the Facial Affective Scale may partly measure different aspects of the pain experience in children, although it remains to be determined to what degree the obtained differences are clinically meaningful. Copyright 1999 European Federation of Chapters of the International Association for the Study of Pain.

Aims: To get insight into the quality of life of a clinical practice sample of patients with heart failure that are admitted to the hospital. Secondly to determine differences between patients with systolic and diastolic dysfunction and finally to describe factors relating to quality of life., Methods: Three dimensions of quality of life (functional capabilities, symptoms and psychosocial adjustment to illness) were assessed during interviews of 186 patients with chronic heart failure. In addition, data on demographic, clinical and self-care characteristics were collected and patients completed a 6-min walk., Results: On average patients walked 172 m in 6 min and reported functioning in daily life at a mean level of 4.5 MET. Patients experienced four different symptoms of heart failure. Most of them described dyspnea, fatigue, sleep disturbance and ankle oedema. Problems with psychosocial adaptation occurred mostly in social and vocational domains. Overall well-being of patients was rated as 6.4 on a 10-point scale. In regard to quality of life, the only differences between patients with systolic and diastolic heart failure was the occurrence of ankle oedema and health-care orientation. The variance in components of quality of life were partly explained by demographics and clinical characteristics. All three dimensions of quality of life were related to ability for self-care., Conclusion: Patients with heart failure seen in clinical practice are often not comparable to patients described in major clinical trials or patients that are admitted for transplant evaluation. Their functional capabilities are more compromised, but they may have fewer problems with psychosocial adjustment. Patients with normal systolic dysfunction also report a low quality of life. It could be important to enhance self-care abilities of patients to improve psychosocial adaptation to illness.

In a prospective study of 313 Dutch cancer patients with chronic pain, the practice of pain treatment was evaluated by means of Donabedian's structure-process-outcome framework. The practice of pain treatment was assessed by: (1) structural resources, describing the setting in which pain treatment is provided; (2) process components, which describe the clinical practice; and (3) outcome measures, which refer to patients' pain intensity, patient satisfaction, or composite pain management index scores. Results showed that 31.4-59.8% of the cancer pain patients received less than optimal pain treatment. Although pain education and refresher courses for health care providers are scarce, structural resources were not the major cause of the suboptimal level of pain treatment. Rather, the major cause was the process components. Only 36.4% of the patients received strong opioids; 23.1% received analgesics "as needed." Patients' pain knowledge was far from optimal (54.8 on a 0-100 scale), and written pain information was given to only 15.8% of the patients. After discharge, only 36.8% of the district nurses were informed about patients' pain. These results emphasize that continuing efforts to improve the practice of pain treatment are needed.

Purpose: There is limited consensus about the most appropriate measures to evaluate the adequacy of pain treatment in cancer patients. There are no known studies describing commonly used measures to simultaneously evaluate the adequacy of cancer pain treatment. The purpose of this study was to compare measures, which are frequently reported in the literature, to assess the adequacy of pain treatment in cancer patients with chronic pain. This study was part of a randomized controlled trial., Patients and Methods: In total, 313 cancer patients with a pain duration of at least 1 month were evaluated. After a baseline measure in the hospital, patients were followed up at 2, 4, and 8 weeks after discharge at home. Adequacy of cancer pain treatment was evaluated by means of four different types of outcome measures. The four types included three pain intensity markers based on patients' pain intensity, a pain relief scale, a patient satisfaction scale, and three pain management indexes that related patients' pain medication with pain intensity., Results: The proportion of inadequately treated pain patients varied extremely. Depending on the outcome measure used, the percentage of inadequately treated patients ranged from 16% to 91%. The choice of measure, rather than pain treatment itself, determined the proportion of inadequacy., Conclusion: There is an urgent need for consensus about how to evaluate the effectiveness of pain treatment. Studies that evaluate adequacy of pain treatment should be interpreted with caution. Further research is necessary to elucidate the validity and reliability of outcome measures simultaneously.

The importance of research-based practice in nursing has been frequently stressed, and a number of nursing studies have been conducted whose results enable nursing to improve knowledge and practice. This study reports a literature review in which the current status of knowledge and research utilization with regard to pressure sores is described. This review first gives an overview of studies on knowledge utilization in general and shows that the spontaneous diffusion of knowledge is inappropriate. Furthermore, an overview of planned research utilization activities focusing on pressure sore prevention and treatment in nursing is presented. The results of these studies show that planned research utilization activities performed in individual organizations lead to positive outcomes in almost all cases. Therefore, it could be concluded that implementing planned research utilization activities in individual health care institutions seems to be an effective strategy to decrease pressure sore incidence and prevalence rates.

This study investigates the effects of a primary nursing care delivery system on some work-related factors of nurses in long-stay psychiatric care settings. In a quasi-experimental research design a cohort of 176 nurses was followed for 2.5 years. Results showed that as a result of primary nursing the primary nurses found more autonomy in their work and experienced it to be less complex. Furthermore, primary nurses performed personal care tasks less frequently and worked more according to a patient-oriented care model. Several additional analyses were performed owing to the two main problems encountered in this study, namely a high dropout due to job turnover among nurses and the imitation of the intervention by the control group.

Systematic assessment of pain is the basis for adequate pain treatment. In the home situation, however, it is difficult to assess patients' pain intensity. A group of 159 cancer patients who had been admitted to a cancer hospital with pain caused by cancer, cancer therapy, or illness that persisted for at least 1 month received a pain diary. These patients were asked to register their pain intensity at home. Patients were instructed by a nurse to record their Present Pain Intensity on a scale from 0-10 once every morning and every evening for a period of 2 months. In this study, the use of a pain diary in cancer pain patients at home was evaluated. To determine the effects of the pain diary, patients were interviewed at baseline, at 2, 4, and 8 weeks postdischarge. Pain intensity scores were obtained both by patient interviews and from the pain diary. Results show that the use of a pain diary is an appropriate way to assess patients' pain intensity at home. Patients' compliance was high (86%), even in seriously ill patients. When comparing pain scores obtained by patient interview with scores obtained by pain diary, results showed that Present Pain Intensity scores, rather than Average Pain Intensity scores, should be used in both the clinical and the home setting because patients' recall accuracy depends, in part, on the stability of the pain. Because the pain intensity scores fluctuate greatly during the day and over a period of time, the use of a pain diary is useful in the home setting. In 60% of the patients, completing the pain scores helped them to cope with the pain.

This article critically reviews the measures developed for assessing pain in the human neonate. Information was gathered with a computerized literature search of published articles and abstracts, a manual review of relevant conference proceedings, recently published journals, unpublished reports and manuscripts, and personal files. This identified 16 measures that were critically examined for their psychometric properties (reliability and validity) and clinical use. Special emphasis was placed on the feasibility of using neonatal pain assessment measures for clinical practice to address the research-practice gap. Although considerable progress has been made in the field of neonatal pain assessment, few measures have adequately established psychometric properties and clinical utility. Furthermore, most measures have been developed for research and not for the clinical setting. Issues regarding sensitivity, specificity, and the ability to detect clinically important changes have not been addressed. A sufficient number of infant pain measures have now been developed to assess acute pain. There is a paucity of measures to assess chronic pain in infants, and measures for infants who are low birth weight, critically ill, or ventilated. Future research should be aimed at strengthening the properties of existing measures, and at the development of measures for those infants with chronic pain or special needs.

Recovery from heart failure and coping with the effects of this serious condition has a major impact on the self-care demand of patients with heart failure. To prevent potential self-care deficits, education and support are important issues in nursing care. The purpose of this article is to describe the development of a supportive-educative program that is designed to enhance self-care abilities of patients with heart failure. To structure nursing care for these patients and their families in a consistent systematized way, Orem's general theory of nursing is used as a frame of reference.

Purpose: To identify and describe nursing diagnoses, their related factors, and defining characteristics, in hospitalized leukemia patients and to categorize these nursing diagnoses within Functional Health Patterns., Methods: Content analysis of 15 nursing records and interviews with 7 oncology nurses working on a hematology/oncology ward in a University hospital in Maastricht, the Netherlands., Findings: In the leukemia population, 47 nursing diagnoses with their associated characteristics were identified and classified within 10 Functional Health Patterns. Most of the nursing diagnoses were related to the Nutritional-Metabolic, the Cognitive-Perceptual, Activity-Exercise, the Role-Relationship, and the Coping-Stress-Tolerance patterns., Conclusions: Results describe the nursing care needs of patients with leukemia. Since the study used a small sample, results should be interpreted with caution. Further research is recommended.

This article presents a concept analysis of autonomy in relation to the rehabilitation of stroke patients. Analysis of the results of a literature survey provided three important concepts of autonomy in the field of biomedical ethics: self-governance, self-realization and actual autonomy. These concepts are compared with concepts from caring sciences and summarized in a table. The results indicate the importance of the social environment (formal and informal caregivers) for the restoration of autonomy. Because of the patient's condition and context, a social concept of autonomy makes more sense in the rehabilitation of stroke patients in nursing homes than does an individual concept. The concept analysis sheds light on the fact that the majority of studies regarding patient autonomy are primarily based on theoretical reflections, not on empirical studies. More research is warranted to gather information on how patients themselves consider and appreciate autonomy during rehabilitation, to explore the views of stroke patients' formal and informal caregivers and to investigate whether a social concept of autonomy is suitable for all phases of rehabilitation. Concerning the practice of rehabilitation, no definite conclusion can be given as yet.

Factors that, according to nurse participants, influenced the application of what was learned in a pain program were explored by means of qualitative interviews. Participants indicated that the correspondence between the program and their personal view on pain management, attitudes toward the program and innovations in general, self-efficacy perceptions, and (un)familiarity and taboos with respect to program items influenced what they put into practice. In addition, participants indicated that interactions with colleagues, nursing managers, patients, and physicians affected their application of the program. Furthermore, organizational factors, such as limited time and lack of formal program implementation, were mentioned as influential.

This article describes a study examining the influence of expertise on nurses' pain assessments and decisions regarding pharmacological interventions in children. In an experimental design, novices (n = 271), intermediates (n = 222), and experts (n = 202) in pediatric nursing, various cases were presented. Each case consisted of a combination of a vignette and a video. Subjects were asked (1) to assess the child's pain intensity, (2) to specify their confidence in the assessment, and (3) to state whether or not they would administer a non-narcotic analgesic. The results indicated that expertise did not influence assessments of pain intensity. However, expertise did have a distinct impact on both the subjects' confidence in their decisions, and the decision to administer analgesics. Experienced nurses were most confident and were most inclined to administer analgesics. The findings of this study are placed in the context of a general theory on the development of expertise, which assumes that experts' decision-making is based on cognitive structures that describe features of prototypical or even actual patients, so called "illness scripts". From this theory it can be deduced that mainly practical experience is responsible for the (lack of) differences in decision-making between novices, intermediates and experts.

The prevention of pressure sores is a major concern of rehabilitation nurses. Through the years, several methods have been used to prevent pressure sores. One of the most commonly used methods is massage of bony prominences and pressure areas. However, according to most contemporary clinical guidelines, massage should be avoided. This article analyzes the extent to which these guidelines are based on research findings through a literature review on the effectiveness of massage in the prevention of pressure sores. The results of the studies that were analyzed led to the conclusion that massage as therapy for preventing pressure sores in subjects at risk for developing them is not recommended.

Background: This study investigates the long-term benefits of pulmonary rehabilitation in terms of health-related quality of life (HRQL). Such information is of particular importance in developing strategies for aftercare at home which aim to maintain the initial improvements seen after rehabilitation., Methods: Criteria for inclusion were diagnosis of COPD, age 40 to 80 years, and completion of an inpatient pulmonary rehabilitation program. HRQL was assessed by the St. George Respiratory Questionnaire, and the component "well-being" from the Medical Psychological Questionnaire for Lung Diseases. Patient characteristics included lung function parameters such as FEV1, the diffusion capacity for carbon monoxide and maximal inspiratory mouth pressure, age, socio-economic variables, and exercise tolerance evaluated by a 12-min walking test. To define patients in whom long-term benefits were sustained 9 months postdischarge, cases were clustered using hierarchical cluster analysis, based on the HRQL scores at discharge., Results: Complete data sets were obtained from 77 patients. Two groups of cases were clustered. Patient characteristics were essentially the same in both groups. HRQL differed significantly between groups on admission, at discharge, and at follow-up. Within-group analysis revealed that patients in group 1 (n=44) had "moderate" scores on HRQL on admission, a significant improvement between admission and discharge, followed by a significant deterioration of HRQL at follow-up. Group 2 (n=33) had "severely" impaired HRQL on admission, little improvement after rehabilitation, and remained in fairly stable condition 9 months postdischarge., Conclusions: Results suggest that patients with COPD require a differentiated aftercare program of postdischarge pulmonary rehabilitation.

Nurses in different settings are involved in caring for patients with heart failure. In the clinic, hospital, nursing home or patients' home, the nurse has a role in detecting, identifying and treating heart failure. In order to provide optimal care, literature on possible and effective interventions should be available to nurses. This study gives an overview of nursing care for patients with heart failure as described in practice, literature and standard nursing care plans. Based on interviews of 45 nurses, a review of all pertinent literature published between 1983 and 1993 and a review of standard nursing care plans used in the Netherlands to care for patients with heart failure, four composite themes emerged; namely, basic nursing care, assessment and observation, symptom-relieving interventions, and patient education. Caring for patients with heart failure is very complex and is often aimed at keeping a very delicate balance between, e.g. rest and activity, fluid intake and elimination, and therapeutic cost and benefit. Treatment strategies for optimizing care for these patients are described.

Surgical nurses from five Dutch general hospitals participated in a continuing education program on pain assessment and management. A pretest-posttest controlled intervention study revealed that the program led to an increase in the quality of activities relevant to taking pain histories. Although this increase in quality was most apparent 1 month after the program, it was still observable 6 months after the program. There were, however, no effects on the number of activities relevant to taking pain histories, or on the number of nurses who used direct questioning as a method to determine pain. There may be several explanations for these results, including nurses' limited openness to new approaches, a lack of support from physicians and nurse superiors, and that program items were not translated into ward policy.

In most agencies for community nursing at least two types of nurse are employed. To ensure efficient use of personnel and high quality of nursing care, the principles of differentiated practice and specialization are used. It is suggested that these types of work redesign will have consequences for nurses and their work. We made a review of the literature to see how these principles are used and their effects on job satisfaction, burnout and quality of care. This review provides several views and descriptions of nursing activities, but it also shows that there is a paucity of quantitative data about the effects of differentiated practice and specialization in community nursing. To study these effects more systematically, a research model is presented. This model makes it possible to describe the changes in job characteristics caused by differentiated practice and specialization. Secondly, it allows the effects on job satisfaction, burnout and quality of care to be studied.

Twelve studies on the effects of pain programmes for nurses were reviewed. Most of the programmes focused on aspects of pain, pain medication or pain assessment. Only two programmes (Ferrell et al., 1993, J. Pain Symptom Management, Vol. 8, No. 8, pp. 549-556; Sofaer, 1983, Nurs. Times, Vol. 79, No. 47, pp. 38-42; 1984, Ph.D. Thesis, University of Edinburgh) also paid attention to non-pharmacological nursing interventions. Randomized control groups, established measurement instruments, testing statistics, and long-term follow-up measurements, were not often used in the effect evaluation of the programmes. Effects reported on both nurses and patients were for the most part positive. Given the small number of studies and their methodological limitations, further research into the effectiveness of continuing pain education in nursing is indicated.

The aim of this article is to describe job satisfaction and burnout among two categories of community-based nurses (N = 402) in the Netherlands taking account of job and individual characteristics. Results show that these nurses are moderately satisfied with their jobs and the effects of burnout are average. Further, community nurses are less satisfied and have experienced burnout to a greater extent than community nurse auxiliaries. Both job characteristics and individual characteristics are related to job satisfaction and burnout. However, job satisfaction is affected to a greater extent by job characteristics whereas burnout is more often a result of individual characteristics. As research in this area is scarce and home care is changing radically, these results may be valuable in coping with change without losing sight of nursing's professional values.

The effectiveness of a continuing education programme on pain assessment and management was investigated in 106 surgical cancer nurses. It was found that the programme led to a more positive attitude towards physical and relaxation interventions (such as the use of relaxation, distraction and massage techniques). In addition, an increase in the duration and quality of psychosocial interventions (provision of information, emotional support, and promotion of autonomy) was established. Furthermore, the programme resulted in an increase in the quality of physical and relaxation interventions. However, the programme did not lead to more positive attitudes towards psychosocial interventions, or to increases in the numbers of psychosocial, physical and relaxation interventions.

This article reports on a study that examines the influence of task-related factors on nurses' pain assessments and decision regarding interventions. In an experimental design pediatric nurses (n = 202), were exposed to different cases, each case being a combination of a vignette and a videotape. For every case subjects were asked to assess the child's pain and to state whether they would administer an analgesic. The results indicated that pediatric nurses attributed more pain and were more inclined to administer non-narcotic analgesics to children who vocally expressed their pain than to children who were less expressive. Furthermore, the interaction results between the child's expression and the medical diagnosis revealed a trend indicating that nurses attributed the most pain to the child when the diagnosis was severe and the child vocally expressed his pain.

The usefulness of qualitative research is illustrated by the presentation of a needs assessment among Dutch surgical cancer nurses and patients. Participant observations and qualitative interviews showed that nurses usually did not assess pain systematically, gave insufficient pain medication, were unaware of the effectiveness of some nonpharmacological techniques, and often felt powerless in giving psychosocial support. Patients appeared inhibited in expressing pain and inhibition was reinforced by ineffective interactions with nurses. using these findings, a continuing education program on pain assessment and management was developed.

In a pilot study, a continuing education program on pain assessment and management was implemented and evaluated. Questionnaires were completed by the nurse participants at the beginning, the end, and 2 months after the end of the pilot program. After the pilot program, participants reported having engaged in qualitatively improved psychosocial pain-reducing interventions. Findings from the pilot study were used to develop a definitive program and questionnaires of a larger intervention study. This article illustrates the usefulness of initially conducting research on a small-scale basis.

The purpose of this study is to describe the pain experienced by children with juvenile rheumatoid arthritis. A patient sample composed of 33 children, 7-16 y of age, with juvenile rheumatoid arthritis was included in the study. The children, their parents, and the attending rheumatologist assessed the child's pain using the Abu-Saad pediatric pain assessment tool. In addition, a disease activity index was used by the physician. All children reported pain. This was most often described as hurting, stinging, warm, and uncomfortable. Significant correlations were found for present pain between the child, parent, and physician. The worst pain of the child for the previous week, and not the present pain, correlated with the disease activity as rated by the physician. These findings indicate a need for pain assessment in patients with juvenile rheumatoid arthritis and emphasize the importance of longitudinal studies in this area.

The tasks of the psychiatric nurse, working in long-term psychiatric settings, are described and analysed in this study. A questionnaire was completed by 361 nurses in five different psychiatric hospitals in the Netherlands. Nurses appear to concentrate upon personal care tasks in and around their ward. This does not fit adequately the changes in psychiatric practice. By means of an externally oriented hospital policy, cooperation with other care agencies and a realization of a more patient-orientated and rehabilitation model of care, the nurse is better prepared for helping patients make their move to the community.