Quality of life before and one year following stem cell transplantation using an individualized and a standardized instrument.

OBJECTIVE: The aim was to prospectively measure quality of life in patients with malignant blood disorders following stem cell transplantation (SCT) using an individualized and a standardized measure. METHODS: Twenty-two consecutive patients were assessed before and one year following SCT, using a generic and disease-related version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) and the EORTC QLQ-C30. Results of the QLQ-C30 were compared with Swedish norm values. RESULTS: A majority of the patients reported concerns related to health before as well as one year after SCT, recorded by both instruments. Mean scores produced by the SEIQoL-DW, and four scales of the EORTC QLQ-C30, showed a change over time, indicating improved quality of life one year after SCT. In comparison with Swedish norm values for the EORTC QLQ-C30, SCT recipients reported a worse functioning. CONCLUSIONS: In addition to well-known disease and treatment-related problems, areas not typically included in standardized instruments were nominated in the disease-related SEIQoL-DW. Such areas included positive aspects, e.g. a changed view of life and oneself. The results support the use of the generic and disease-related SEIQoL-DW to achieve a comprehensive picture of patient's clinical situation under treatment or when recovering from illness.

Symptoms experienced by patients with peripheral vestibular disorders: evaluation of the Vertigo Symptom Scale for clinical application.

OBJECTIVES: To describe symptoms during an episode of dizziness in a sample of patients suffering from peripheral vestibular disorders and to compare them with the items in the Vertigo Symptom Scale. DESIGN: A descriptive study from a sample of patients with peripheral vestibular disorders. SETTING: Patients visiting a department of audiology at a university hospital. PARTICIPANTS: Twenty patients with peripheral vestibular disorders. The inclusion criteria were that the patient had had at least three spontaneous attacks of vertigo and/or was constantly unsteady during the last 3 months for at least 75% of the time when awake. MAIN OUTCOME MEASURES: Patients were instructed to complete a diary where they recorded symptoms that arose during an episode of dizziness. These symptoms were compared with the content of the Vertigo Symptom Scale. RESULTS: The most frequent symptoms as mentioned by the patients in their diaries were a feeling that things are spinning or moving around, nausea, feeling unsteady/about to lose one's balance, fatigue, headache, a feeling as if the ground you walk on is distant and ear-related such as tinnitus and a feeling of pressure in the ear. Pain in the heart or chest region, a heavy feeling in the arms or legs, pain in the lower part of the back and excessive sweating were not mentioned at all or by very few patients. Analysis showed that some of the symptoms included in the Vertigo Symptom Scale occurred less during an episode of dizziness than others in this sample of patients with peripheral vestibular disorders. CONCLUSION: It was found that the Vertigo Symptom Scale is an adequate base but may need to be developed for use in patients diagnosed with peripheral vestibular symptoms to be able to evaluate care and treatment.

Validation of an extended version of the SEIQoL-DW in a cohort of Hodgkin lymphoma' survivors.

Individual measures of quality of life (QoL) have been initiated to overcome the possible limitations with standardized measures using predefined domains for evaluation. The Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) uses personal interviews to explore the five most important areas in life, both positive and negative, crucial for QoL. The nominated areas are rated regarding satisfaction and weighted to capture the importance of each selected area. The Swedish version has been extended with a disease-specific module, which evaluates the areas in life influenced by disease. The aim of this study was to validate the disease-specific SEIQoL-DW and furthermore, to evaluate the influence of the importance ratings on the overall index score in a cohort of Hodgkin lymphoma survivors. The results support the construct validity of the disease-specific SEIQoL-DW and indicate that the instrument appears to be a sensitive measure with ability to differentiate between groups with disparate subjective health status. The SEIQoL-DW succeeds to capture both positive and negative areas in life influenced by disease. The present study gave no evidence that the weighting procedure has any impact on the total index. The results support the use of the new extended version including a disease-specific module.

Patients' experience of ambulatory self-administration of pamidronate in multiple myeloma.

The aim was to explore ambulatory self-administration of Pamidronate (Self-A-Pam) from a patient perspective in patients with multiple myeloma. Pamidronate is normally administered once a month as an intravenous infusion over 2 to 4 hours. Twenty-one patients were included, of whom 13 (6 women, 7 men) with a median age of 56 years (range 37-70) completed the educational program and subsequent ambulatory Self-A-Pam. An RN at the hospital initiated the Pamidronate therapy (90 mg). The patients then left hospital and later, on completion, they disconnected the infusion, either alone or with the assistance of a relative or significant other. Interviews were used to collect information about the experiences during the course of the Self-A-Pam. In total, 12 patients were interviewed after 3 doses of Self-A-Pam. One patient declined to participate in the interview. A qualitative analysis of the textual data was performed. Five main categories were identified: decision concerning Self-A-Pam, information and education, sources of practical help or support, effects of Self-A-Pam, and feelings and activities in relation to place (hospital, home, or public place). All 13 patients who started on Self-A-Pam went through 3 courses of Self-A-Pam during the study period. Many patients reported a gain in feelings of freedom/independence and time saving. However, some patients reported insufficient education and feelings of anxiety associated with the responsibility of handling the venous access device.

Percutaneous endoscopic gastrostomy (PEG) - a long-term follow-up study in head and neck cancer patients.

Many patients with head and neck cancer experience problems related to swallowing. A retrospective study of 156 consecutive patients who received a percutaneous endoscopic gastrostomy (PEG) at a teaching hospital is presented. The results showed that 42% had complications. Fatal complications were seen in connection with PEG tube placement, but severe and minor complications could occur much later. The method of PEG tube insertion did not affect the complication rates. The spectrum of observed complications is different to that reported earlier, suggesting that the learning curve of surgeons under training could have influenced the outcome. It may be concluded that for a very sick patient a theoretically easy surgical procedure could turn into a potentially dangerous operation. It is important to select suitable candidates for a PEG. Head and neck cancer patients with a PEG need special attention in connection with the PEG tube placement and also in a long perspective, e.g. by follow-up at a nurse-led outpatient clinic.

Determinants of health-related quality of life in long-term survivors of Hodgkin's lymphoma.

In this study health-related quality of life (HRQL) in long-term survivors of Hodgkin's lymphoma (HL) was evaluated and the findings were analyzed using a conceptual model developed by Wilson and Cleary. A better understanding of the relationships between the variables explaining HRQL may improve care and rehabilitation of HL patients. The populations were long-term survivors of HL (n = 121) and a control group (n = 236). Participants were approached with one semi-structured interview, an extended version of the Schedule for the Evaluation of Individual Quality of Life - Direct Weighting (SEIQoL-DW) and three standardized questionnaires: Hospital Anxiety and Depression (HAD) scale, Short Form 12 health survey questionnaire (SF-12) and Sense of Coherence (SOC) scale. No differences regarding the mean scores were found between the HL survivors and the controls except for the SF-12, where the patients considered themselves to be in poorer physical health than the controls (p < 0.01). Even though physical health was diminished, patients did not evaluate overall QoL worse compared to the controls. The major determinants of perception of general QoL were self-rated physical and mental health as well as SOC. The HRQL of persons who have survived a median of 14 years with HL is similar to that of controls.

Comparison of the analgesic efficacy of ketobemidone and morphine for management of postoperative pain in children: a randomized, controlled study.

BACKGROUND: Ketobemidone has been used as an analgesic for postoperative pain in children, but to our knowledge the effect and occurrence of adverse effects of ketobemidone compared to morphine is not known. The aim was to determine if the analgesic potency and the occurrence of adverse effects of ketobemidone differ from morphine when administered to children, as measured by patient-controlled analgesia consumption (PCA) for postoperative pain. METHODS: Sixty healthy children, aged 6 to 16 years, scheduled for elective surgery were randomized to receive either ketobemidone (Ke) 1 mg ml(-1) or morphine (Mo) 1 mg ml(-1) for postoperative pain through PCA. Drug consumption (microg kg(-1) h(-1)), the number of PCA doses, pain intensity, and adverse effects were recorded at regular intervals. RESULTS: Data on total drug consumption were based on 26 children in the Ke group and 28 in the Mo group. A non-statistically significant difference for total mean consumption of ketobemidone (18.6 microg kg(-1)h(-1)) and morphine (23.2 microg kg(-1)h(-1)) was obtained. The mean dose ratio (Mo/Ke) was 0.80 and the median was 0.94. Children's characteristics, loading dose, PCA doses, VAS scores, and adverse effects showed no significant differences between the groups. CONCLUSION: The analgesic potency and adverse effects of ketobemidone are similar to morphine when used for postoperative pain management in children.

Individual quality of life in long-term survivors of Hodgkin's lymphoma--a comparative study.

This study aimed to use an individual approach in evaluating QoL in long-term survivors of Hodgkin's lymphoma (HL) and their view of what impact the disease has had on life using an extended version of the The Schedule for the Evaluation of the Individual quality of life-Direct Weighting (SEIQoL-DW). Adult long-term survivors from HL (n = 121) were compared with a randomly selected sample of the general population in Stockholm (n = 236). The results showed that the most commonly nominated areas (> 50% of patients and controls) important in life were family, personal health, work and relations to other people. The HL survivors mentioned leisure and finances less frequently than the controls. However, neither the current status in the different areas nor the QoL index score differed between survivors and controls. Thoughts and worries around disease, fatigue and loss of energy and late effects on skin and mucous membrane were the most commonly reported problems following HL. Sixty-six percent of the survivors reported a change in their view of life and of themselves. Demographic and disease characteristics did not influence the ratings of the chosen areas. In conclusion, long-term survivors of HL seem to have adapted well to the situation of having had a life-threatening disease and undergoing treatment, as measured with SEIQoL-DW. The extended Swedish version with a disease-specific module could be of great value when identifying specific issues that are important for the patient at time of evaluation.

Gender differences in perceived health-related quality of life among patients with HIV infection.

This article explores how a group of human immunodeficiency virus (HIV)-infected patients perceived their health-related quality of life (HRQOL) in relation to their coping capacity expressed as sense of coherence. The emphasis was on gender differences. The sample consisted of 55 women (29%) and 134 men (71%), receiving outpatient medical care in a hospital. Self-report instruments, the health index, the HIV symptom scale, the well-being scale, the sense of coherence (SOC) scale and the Interview Schedule for Social Interaction were used. Disease status (HIV CDC classification, absolute CD4+ lymphocyte count and HIV/RNA) was also measured, and demographic data were collected. The total sample scored significantly worse self-rated health and weaker SOC than healthy controls. The HIV-infected women were significantly younger than the men (p < 0.0001). The majority of the women (60%) were infected by heterosexual transmission and of the men (58%) by homosexual/bisexual contacts. In the univariate analysis the women scored significantly less positive well-being (p < 0.05), weaker SOC (p < 0.05), and less social support (p < 0.01) than the men despite less advanced disease. Multiple regression analyses revealed that SOC was the strongest predictor of subjective HRQOL in both genders. The results suggest that health professionals who individualize their care of HIV-infected patients should try to be sensitive to the different ways in which men and women express their HRQOL.