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Biomedical subjects

A Gardulf

Publications and source records attributed to A Gardulf.

At least 19 recordsLinked to original sources
PubMed2005

Measuring treatment satisfaction in patients with primary immunodeficiency diseases receiving lifelong immunoglobulin replacement therapy.

BACKGROUND: Treatment satisfaction of patients with primary immunodeficiency diseases receiving hospital-based intravenous (IVIG) or home-based subcutaneous (SCIG) immunoglobulin infusions requires investigation. OBJECTIVE: Evaluation of the properties and suitability of the Life Quality Index (LQI), as an instrument to assess treatment satisfaction. METHODS: Patients received weekly SCIG and completed the LQI, two global treatment satisfaction questions and the CHQ-PF50 (children) or the SF-36 (adults) at baseline and 10 months. The LQI was psychometrically evaluated. RESULTS: The LQI comprised four scales: treatment interference (I), therapy related problems (II), therapy setting (III), treatment costs (IV). Convergent/discriminant validity for scales I, II, III was acceptable, for scale IV moderate. CHQ-PF50 scales behavior, bodily pain, global behavior, global health, mental health, parental impact-emotion significantly correlated with LQI scale II, the family activity scale with LQI scales I, III. SF-36 scale bodily pain significantly correlated with scale III. Internal consistency was good for scales I, II, III, but poor for scale IV. Score values significantly increased for scales I, III, IV in patients switching from IVIG to SCIG. CONCLUSIONS: Three valid LQI scales were determined. Cost-related questions should be removed due to low reliability. Patients-perceived therapy effectiveness and patient-physician/nurse interaction should be included in the instrument.

Adolescent↗
PubMed2003

Symptom distress, functional status and health-related quality of life before high-dose chemotherapy with stem-cell transplantation.

The aims of this study were to describe how a group of patients with different malignant diseases perceived symptom distress (SD), functional status (FS) and health-related quality of life (HRQOL) on admission to the hospital for stem-cell transplantation (SCT), to compare the obtained data regarding FS and HRQOL with similar data from two general-population groups, and to relate the results to disease- and treatment-specific data. Fifty-one patients participated in the study. Three instruments were used to collect data: SFID-SCT, SIP and SWED-QUAL. The majority of the patients (92%) reported ongoing symptoms even before the SCT with tiredness (67%) and anxiety (53%) as the two most commonly reported symptoms. Although tiredness and anxiety were reported to be the most frequently occurring symptoms, these symptoms were not considered to cause that much distress. Instead, vomiting, reduced mobility and fever, although less commonly occurring, were reported as highly distressing when present. Compared with the general-population groups, the patients reported significantly poorer FS and HRQOL but no statistically significant correlations were found between SD, FS or HRQOL and the time since the last chemotherapy cycle or cycles respectively. Patients with advanced disease and patients with multiple myeloma were found to report more SD and poorer FS and HRQOL.

Activities of Daily Living↗
PubMed2002

Express subcutaneous IgG infusions: decreased time of delivery with maintained safety.

The aims of the study were to evaluate the safety and feasibility of weekly express subcutaneous replacement IgG self-infusions (E-SCIG, 35 mL/h/syringe driver) in 50 patients and to evaluate their perceptions of the therapy. A total of 4900 E-SCIG infusions at separate infusion sites were given on 1228 treatment occasions. The most commonly reported local tissue reactions were swelling (n = 37), redness (n = 25), and soreness (n = 24). A majority of these patients reported the local reactions as less intense or unchanged compared to those arising from rapid SCIG (20 mL/h) infusions. The patients reported a median score of 16 (visual analogue scale, VAS; 1, not troublesome at all) regarding their overall perceptions of the local reactions. They were positive toward the home therapy regime (median VAS score 96; 100, very positive) and anxious to continue with the E-SCIG infusions (median VAS score 98; 100, very anxious). The E-SCIG method seems to be safe, with few pronounced local reactions, and is appreciated by the patients. Express delivery could also potentially facilitate IgG delivery in a wide variety of diseases, such as autoimmune and autoimmune-like conditions of a neurological or rheumatological character.

Administration, Cutaneous↗
PubMed2001

Rapid subcutaneous IgG replacement therapy at home for pregnant immunodeficient women.

The use of slow or rapid, subcutaneous, IgG (SCIG) infusions in pregnant women with primary antibody deficiencies has been described earlier, though only in single-case reports. In this study, we have evaluated the effect of rapid, SCIG infusions during 11 pregnancies in nine women [six women with common variable immunodeficiency (CVID), two with IgG-subclass deficiencies, and one with combined IgA and IgG2 deficiency]. The weekly infusions were given by the women themselves at a dose of 100 mg/kg/week throughout the pregnancy. No adverse systemic reactions or pronounced, local tissue reactions were recorded during or after the more than 400 infusions. The 11 babies were healthy and were born after 38-42 weeks of uneventful gestation. The concentrations of maternal S-IgG at the time of delivery in the four women with CVID ranged from 6.0 to 8.3 g/L, with cord/maternal S-IgG ratios of 1.0-1.5. The IgG subclasses were transferred to the infants. The SCIG home-therapy regime was greatly appreciated by the women.

Adult↗
PubMed2001

Health-related quality of life, symptom distress and sense of coherence in adult survivors of allogeneic stem-cell transplantation.

This is the first Swedish study to evaluate the health-related quality of life and sense of coherence in adult survivors of allogeneic, haematopoietic stem cell transplantation (HSCT). Twenty-five recipients completed three questionnaires 2-4 years after the transplantation. The questionnaires used were the Sickness Impact Profile (SIP), the Symptom Frequency Intensity and Distress (SFID-BMT) scale and the Sense of Coherence (SOC) scale measuring subjective functional status, symptom distress and coping ability. Impairments in functional status were found, as compared with a population norm. The most common impairments were found in the areas of social interaction and sleep and rest. Eye problems, dry mouth, cough, sexual problems, tiredness, anxiety and changes of taste were symptoms reported by more than half of the patients. Despite impaired functioning and a high incidence of symptoms, the general health was described as quite good or excellent by 80% (n = 20) of the patients. The majority (20/22) had also been able to return to work or to attend school. No difference in the sense of coherence was seen, as compared with the population norm. Functional impairments were significantly correlated to a lower degree of sense of coherence.

Adult↗
PubMed2000

The health-related quality of life of patients suffering from the late effects of polio (post-polio).

In Sweden alone, there are today approximately 10 000-16 500 polio survivors. Between 60% and 80% experience new symptoms several years after the initial attack of poliomyelitis. The aims of this study were to investigate and describe the self-rated health-related quality of life and functional status of a group of Swedish patients with post-polio, to investigate whether any differences within the group could be related to demographic or disease-specific data and to compare the post-polio patients with individuals sampled from the general population. Data were obtained by using two questionnaires, the Swedish Health-Related Quality of Life Questionnaire (SWED-QUAL) and the Sickness Impact Profile (SIP). A total of 150 patients, 86 women and 64 men with median age 61 (20-82) years, were consecutively included. The study showed that the patients mainly reported that their physical, functional status was affected by their post-polio condition. Factors found to be associated with the physical, functional status were age and the number of parts of the body affected by the polio. On comparing the post-polio patients with two samples from the Swedish general population, it was found that the patients reported a poorer functional status and health-related quality of life. The women with post-polio reported more pain, as compared with both the men with post-polio and the women in the general population sample. The family life of the patients - in contrast to their physical abilities - did not seem to be affected by the new deteriorating condition. It is concluded that, owing to the wide range of symptoms, the patients with post-polio need care and support from multidisciplinary teams, including nurses and occupational therapists.

Activities of Daily Living↗
PubMed2000

Interferon-beta treatment for patients with multiple sclerosis: the patients' perceptions of the side-effects.

The aims of this study were to investigate (i) the self-reported frequency and intensity of systemic side-effects and their impact on the daily lives of patients suffering from Multiple Sclerosis (MS) and undergoing interferon-beta therapy and (ii) the self-reported frequency and perceptions of any local-tissue reactions. Forty patients aged 22 - 59 years (27 females) with relapsing/remitting MS were consecutively recruited for the study (17 on interferon-beta-1a and 23 on interferon-beta-1b). Two self-administered questionnaires were used before and after 1, 4, 8 and 16 weeks of therapy. The interferon therapy was found to be associated with flu-like symptoms. Most systemic side-effects were reported to be mild and to have little impact on the patients' daily lives. Asthenia and fatigue were more often rated as moderate or severe. The most frequently reported local-tissue side-effects were redness and local pain at the injection sites. A considerable inter-individual variation was found among patients regarding the perceptions of both the systemic and local side-effects. This suggests that it is of importance to identify early those patients who may need more support or other interventions to maintain a successful compliance. Multiple Sclerosis (2000) 6 349 - 354

Activities of Daily Living↗
PubMed2000

Patients' satisfaction with the care given by district nurses at home and at primary health care centres.

The main purpose of this study was to investigate patients' satisfaction with the care given by the district nurses at home and at the primary health care centres in one area of Greater Stockholm. The questionnaire entitled 'Quality of Care from the Patient's Perspective' (QPP) was used. A total of 168 adult, home-care (HC) and 264 outpatient clinic (OC) patients answered this questionnaire. Maximum median scores were reported for most items designed to measure the four following dimensions: 'medical-technical' competence of the district nurses; 'physical-technical' conditions of the care organization; 'identity orientation' in the attitudes and actions of the district nurses and the 'socio-cultural' atmosphere of the care organization; and the perceived accessibility of nursing care. Some areas were identified as being in need of improvement, for example, pain alleviation, safety of the patients' home environment, the possibility of the patients participating in the decision-making process, the feeling that the care is not based on the patients' desires and needs, and the possibility of always meeting the same district nurse. Differences between HC and OC patients and between sub-groups were found regarding demographic characteristics and self-rated, physical health and psychological well-being. HC and OC patients with poor, self-rated, physical health were identified as being likely to be dissatisfied with the care.

Adult↗
PubMed1999

Evaluation of a nurse-run asthma school.

Important aims of the study were to investigate whether an educational program (the 'Asthma School') directed by a nurse led to improved knowledge of the disease, to improved self-medication and self-management and to improved, self-rated, functional status. A total of 32 patients (6 males, 26 females, mean age 43 years) was included. The following methods were used to collect the data before and one year after the Asthma School was completed; two study-specific questionnaires for collecting demographic data and measuring different aspects of the patients' knowledge of the disease and its treatment, monthly diary cards, lung-function tests (FEV1) and the Sickness Impact Profile (SIP) questionnaire. The main results of the study were an improved knowledge of the disease and its treatment, better self-management, i.e. more frequent use of the peak expiratory flow meter (PEF-meter) and use of inhaled bronchodilators on an as-required basis, fewer patients on sick-leave and a better, self-rated, physical health status. However, in spite of these encouraging results, the lungfunction was found to be unaffected, no pronounced changes in the use of asthma drugs could be found and the patients' need for medical care remained the same.

Adolescent↗
PubMed1998

The opinions of district nurses regarding the knowledge, management and documentation of patients with chronic pain.

This is the first of two studies investigating district nurses' opinions regarding the knowledge, management and nursing documentation of patients with chronic pain conditions, before and after the introduction of 'pain advisers' in one health care region in Stockholm. Seventy (97%) district nurses at 12 selected primary health care centres (PHCCs) answered a questionnaire. The study showed that 85% of the district nurses met patients with chronic pain conditions at least once a week. None of the 12 PHCCs had any written information/policies on pain control. Many district nurses did not perform any individual analysis of the patients' pain and very few used any tool, such as VAS, to assess or evaluate the patients' pain. The district nurses reported insufficient pain documentation. A number of district nurses were dissatisfied with the present management of patients with chronic pain at their PHCCs, their own knowledge of pain control, their own preparedness to meet these patients, their own follow-ups and their own documentation. The study also showed that the district nurses' attitudes to pain and pain control varied, depending on how satisfied they were with their own management of patients with chronic pain conditions.

Adult↗
PubMed1997

The opinions of nursing documentation held by district nurses and by nurses at primary health care centres.

Before a general, nursing documentation model was implemented in one health care region of the Stockholm County Council the opinions which district nurses and nurses at the primary health care centers (PHCCs) had of nursing documentation were investigated. 164 nurses (94%) at all the 22 PHCCs within the region answered a questionnaire in October, 1995. The study showed that the nurses in general were dissatisfied with their own, as well as with their colleagues, nursing documentation. The lack of a common, patient-record model for nursing documentation was considered the greatest obstacle, followed by lack of time and lack of knowledge. Most of the nurses believed that patient records which clearly included all parts of the nursing process would promote patient care. However, according to the nurses themselves, less than one-fifth of them recorded nursing history and nursing outcomes for all or most of their patients. One-third of the nurses reported that documented planned nursing interventions, about one-fourth nursing status and about half of them implemented nursing interventions for all or most of their patients. The nurses said that nursing diagnoses, goals and epicrises were rarely documented. There was no significant correlation between the nurses' ages and their opinions of nursing documentation. Nurses who had completed their education after 1985 were more positive to further education in nursing documentation and to computerised patient records, and confirmed more than others that patient records which included the entire nursing process model would promote patient care. Nurses who worked only at PHCCs were more satisfied with their own documentation as well as with that at their centres and were more positive to computer support than district nurses. Nurses at PHCCs were less in favour of education in nursing documentation, compared with nurses working in home health care and child care. The nurses who were not satisfied with their own nursing documentation were not satisfied with their colleagues' documentation either, but they were positive to further nursing education. More than others, they were of the opinion that better patient care follows from patient records which include the entire nursing process model. The study shows the need for education and continuous support aimed at nurses within the primary health care system regarding nursing documentation.

Adult↗
PubMed1996

Health-related quality of life in women with breast cancer undergoing autologous stem-cell transplantation.

The functional capacity and the health-related quality of life were investigated in nine women (ages 23-58 years) undergoing high-dose chemotherapy with autologous stem-cell transplantation (ASCT). Data were obtained by using two questionnaires: the Sickness Impact Profile (SIP) and the Swedish Health-Related Quality of Life Questionnaire (SWED-QUAL). The patients answered the questionnaires on three occasions: on admission to the transplant unit, at discharge from the unit, and 7-15 weeks after ASCT. It was found that the women were affected by the treatment in various dimensions of daily life. The transplantation primarily affected their self-rated physical health and functions. Their physical-health status was poorest at the time of discharge. The women's emotional status was found to be poor during the whole study period. The results of the present study indicate that professional nursing is essential for breast cancer patients undergoing ASCT.

Activities of Daily Living↗
PubMed1996

Nursing documentation in patient records.

The correct documentation of nursing care is a very important prerequisite for safe care. An extensive survey (n = 380 records), was conducted, using the NoGa protocol for a review of the nurses' documentation. The documentation revealed considerable deficiencies in most of the wards, and the nursing history, status and planned interventions were inadequate in two-thirds of the records. Furthermore, the nursing diagnosis, goals and discharge notes were especially poorly documented. The NoGa protocol was easy to use as an audit tool, useful for screening the nurses' documentation and useful for evaluation of the outcomes of educational programmes in nursing documentation.

Clinical Protocols↗
PubMed1995

Subcutaneous immunoglobulin replacement in patients with primary antibody deficiencies: safety and costs.

Immunoglobulins (IgG) as replacement therapy in primary antibody deficiencies can be given as intramuscular injections, or as intravenous or subcutaneous infusions. Our aims were to obtain information on the frequency of adverse systemic reactions during subcutaneous therapy, the occurrence and intensity of tissue reactions at the infusion sites, and serum IgG changes. Furthermore, we compared costs between the different replacement regimes. Our study included 165 patients (69 women, 96 men, aged 13-76 years) with primary hypogammaglobulinaemia or IgG-subclass deficiencies. Data were compiled from questionnaires filled in by the patients and from their medical records. 33,168 subcutaneous infusions (27,030 in home therapy) had been given. 106 (of which 16 were at home) adverse systemic reactions (100 mild, 6 moderate) were recorded in 28 patients (17%). No severe or anaphylactoid reactions occurred. Despite large immunoglobulin volumes given during 434 patient years (28,480 infusions), no signs have been found that indicate the transmission of hepatitis virus. Transient tissue reactions occurred at the infusion sites but were not troublesome to most patients and we found significant increases in mean serum IgG. The use of subcutaneous instead of intravenous infusions at home would reduce the yearly cost per patient for the health-care sector by US $10,100 in Sweden alone. We conclude that subcutaneous administration of IgG is a safe and convenient method of providing immunoglobulins. We were able to reach serum IgG concentrations similar to those by the intravenous therapy and we found that the method could also be used successfully in patients with previous severe or anaphylactoid reactions to intramuscular injections.

Adolescent↗
PubMed1995

A comparison of the patient-borne costs of therapy with gamma globulin given at the hospital or at home.

The major aim of this study was to estimate and compare the patient-borne costs of lifelong subcutaneous gamma globulin therapy at the hospital and at home. Thirty patients were included and the data were collected with a questionnaire. The introduction of self-therapy at home reduced the total yearly costs by approximately 50% and the out-of-pocket expenses for the patients by 85%.

Adolescent↗
PubMed1995

Lifelong treatment with gammaglobulin for primary antibody deficiencies: the patients' experiences of subcutaneous self-infusions and home therapy.

Primary antibody deficiencies are chronic conditions and the patients usually need lifelong replacement therapy with gammaglobulin to prevent or reduce infections. It has been shown that the gammaglobulin can be given safely as subcutaneous infusions, instead of intramuscular injections or intravenous infusions. The major aim of this multi-centre study was to investigate the perceptions of the subcutaneous method among patients using it, both in hospital settings and as self-infusions at home. The study included 152 patients: 89 women, 63 men, mean age 44 years (range 18-76). Data were collected by using questionnaires. The patients were found to have a strongly positive attitude towards receiving the replacement therapy as subcutaneous infusions, perceived the method as effective in preventing infections and wished to retain the treatment. However, the younger patients found the subcutaneous infusions more uncomfortable and were less determined to continue with the therapy as compared with the older individuals. The responsibility for self-infusions at home was accepted by the patients, leading to an increased independence from the health care personnel and to a feeling of flexibility and freedom. As these patients have a chronic disease and are in need of lifelong treatment, it is important to discuss the development of structured education and training programmes in which special emphasis is placed on the support of the younger patients. It is suggested that Orem's nursing model of self-care may serve as a conceptual framework for nurses working in this specific area of nursing care.

Adolescent↗
PubMed1995

Prevalence of Borrelia burgdorferi sensu lato infection in Ixodes ricinus in Sweden.

Between 1988-1991, a total of 3,141 Ixodes ricinus ticks, 2,740 adults and 401 nymphs, was collected from different localities in 23 of the 25 provinces of Sweden. The ticks were identified, dissected and examined for the presence of Borrelia spirochetes. Indirect immunofluorescence was performed, using an antiserum obtained from rabbits, immunized with sonicated, whole Borrelia burgdorferi spirochetes isolated from Swedish Ixodes ricinus ticks. Borrelia-positive I. ricinus were found in all 23 provinces. The prevalence of infection in adults ranged from 3% in Jämtland to 23% in Södermanland. In nymphs, the infection prevalence ranged from 0% in 9 provinces to 15% in Södermanland. A significantly greater proportion of the adult ticks were found to be positive for Borrelia in the southern and central parts of Sweden as compared to the northern part (Norrland). No significant difference in prevalence could be demonstrated between the western and eastern parts of Sweden. On average, 10% of the nymphs and 15% of the adult I. ricinus were positive for Borrelia. Of 41 non-I. ricinus ticks, none was positive for Borrelia. This study shows that Borrelia burgdorferi sensu lato is present throughout the distributional area of I. ricinus in Sweden. This should lead to increased awareness of signs and symptoms compatible with Lyme borreliosis in persons living in or visiting areas where I. ricinus is present.

Animals↗