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Sofia Robleda, Nancy A Pachana
OBJECTIVES: This study explored unique and personal domains associated with quality of life (QOL) in 153 mid-aged and older Australian adults over age 50, using an innovative measure of individualized QOL, the Schedule for the Evaluation of Individual Quality of Life (SEIQOL-DW). METHODS: Demographic measures as well as the SEIQOL-DW were administered. The qualitative responses on this scale were analyzed by Leximancer, a text analysis program that extracts semantic meaning and relational information automatically from text...
October 27, 2017: Clinical Gerontologist
Katharina Linse, Wolfgang Rüger, Markus Joos, Henning Schmitz-Peiffer, Alexander Storch, Andreas Hermann
Restrictions in communicative abilities are well known in patients with amyotrophic lateral sclerosis (ALS), but only few approaches in terms of evaluation of supportive technologies have been made. We aimed to assess the use and perceived usability of eye-tracking computer devices (ETCS) of severely impacted patients with ALS in an independent, direct manner and relate it to psychological well-being. ETCS enable active communication and social participation in the quadriplegic and anarthric disease state. Therefore, ETCS-based versions of widely used psychosocial questionnaires (ADI-12, SeiQoL-DW, WHO-5) as well as structured questions on communicative functioning and ETCS usage were developed to assess ALS patients, their next of kin and professional caregivers...
May 2018: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
B Jakobsson Larsson, A G Ozanne, K Nordin, I Nygren
OBJECTS: The aim of this prospective and longitudinal study was to describe individual quality of life in patients with amyotrophic lateral sclerosis (ALS) and its correlations with physical function and emotional well-being from diagnosis and over time. MATERIALS AND METHODS: Thirty-six patients were included in the study. Individual quality of life was measured with the Schedule of Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW), illness severity was assessed using the Amyotrophic Lateral Sclerosis Functional Rating Scale (ALS FRS-R), and emotional distress was measured using the Hospital Anxiety and Depression Scale (HADS)...
December 2017: Acta Neurologica Scandinavica
Zeinab Hamidou, Karine Baumstarck, Olivier Chinot, Fabrice Barlesi, Sébastien Salas, Tanguy Leroy, Pascal Auquier
BACKGROUND: The purposes of this study, performed on a large sample of cancer patient-caregiver dyads, were: i) to simultaneously investigate, using an individualized quality of life (QoL) measure (Schedule for the Evaluation of Individual QoL, SEIQoL), the QoL domains freely expressed by cancer patients and their caregivers, and ii) to explore overlapping between the SEIQoL assessment and QoL assessment using traditional instruments. METHODS: The study employed a cross-sectional design including cancer patients who were going to receive chemotherapy treatment and their caregivers...
May 12, 2017: Health and Quality of Life Outcomes
Alessandra Solari, Andrea Giordano, Francesco Patti, Maria Grazia Grasso, Paolo Confalonieri, Lucia Palmisano, Michela Ponzio, Claudia Borreani, Rosalba Rosato, Simone Veronese, Paola Zaratin, Mario Alberto Battaglia
BACKGROUND: Evidence on the efficacy of palliative care in persons with severe multiple sclerosis (MS) is scarce. OBJECTIVE: To assess the efficacy of a home-based palliative approach (HPA) for adults with severe MS and their carers. METHODS: Adults with severe MS-carer dyads were assigned (2:1 ratio) to either HPA or usual care (UC). At each center, a multi-professional team delivered the 6-month intervention. A blind examiner assessed dyads at baseline, 3 months, and 6 months...
April 2018: Multiple Sclerosis: Clinical and Laboratory Research
Hossein Matlabi, Sharareh Ahmadzadeh
BACKGROUND: Quality of life (QoL) has become an important issue for patients with chronic renal failure diseases who are permanently undergoing hemodialysis. In this study, an adapted schedule for the evaluation of individual quality of life (SEIQoL-adapted) was used to evaluate QoL among hemodialysis patients, to explore their views about the most important aspects of life satisfaction. METHODS AND RESULTS: A multiple approach design and convenience sampling were applied to recruit 53 patients from a hemodialysis unit in Iran...
2017: Patient Preference and Adherence
Ala' S Aburub, Nancy E Mayo
PURPOSE: To identify from the published literature the feasibility and the application of the individualized measures [Patient Generated Index (PGI), Schedule for the Evaluation of Individual Quality of Life (SEIQOL), and the short form of it (the direct weighting SEIQOL-DW)] in the context of cancer and to summarize the evidence on the psychometric properties of these measures. METHODS: Ovid Medline, PubMed, Embase, and CINAHL were searched up to April 2016. All studies were included if they reported information about the psychometric properties of the individualized measures and included patients diagnosed with any type of cancer at any age...
May 2017: Quality of Life Research
A M Giovannetti, E Pietrolongo, A Giordano, V Cimino, A Campanella, G Morone, A Fusco, A Lugaresi, P Confalonieri, F Patti, M G Grasso, M Ponzio, S Veronese, A Solari
PURPOSE: Individualized quality of life (QoL) measures differ from traditional inventories in that QoL domains/weights are not predetermined, but identified by the individual. We assessed practicability of the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW) interview in severely affected multiple sclerosis (MS) patients; the key QoL dimensions identified; and the correlation of the SEIQoL-DW index score with standard patient-reported outcome measures (PROMs)...
November 2016: Quality of Life Research
Ylva Tiblom Ehrsson, Kay Sundberg, Göran Laurell, Ann Langius-Eklöf
AIM: To explore individual quality of life in patients with head and neck cancer from diagnosis up to 3 months after termination of radiotherapy. RESEARCH QUESTIONS: 1) Which areas in life are important to quality of life, and which are influenced by the disease and by having oral or enteral nutrition; and 2) Which areas in life are influenced by having a nasogastric feeding tube (NGT) or a percutaneous endoscopic gastrostomy (PEG) tube? MATERIAL AND METHODS: Data were collected in 36 patients...
2015: Upsala Journal of Medical Sciences
Carlota Las Hayas, Patricia Padilla, Andrés Gómez del Barrio, Luís Beato-Fernandez, Pedro Muñoz, Manuel Gámez-Guadix
Individualised measures of quality of life (QoL) refer to instruments that encourage the respondent to actively elicit which areas of their life are most relevant for his/her QoL. The aim of this study is to compare individualised versus standard measures of QoL in a sample of patients with eating disorder (ED). The Schedule for the Evaluation of the Individual Quality of Life (SEIQoL) and a generic measure of QoL [World Health Organization Brief Quality of Life Assessment Scale (WHOQOL-BREF)] were applied on two occasions (one-year follow-up) to a sample of 165 patients with ED, 57 recovered patients with ED, and 349 women from the general population...
March 2016: European Eating Disorders Review: the Journal of the Eating Disorders Association
Simone Veronese, G Gallo, A Valle, C Cugno, A Chiò, A Calvo, P Cavalla, M Zibetti, C Rivoiro, D J Oliver
BACKGROUND: This study analysed the impact on palliative care outcomes of a new specialist palliative care service for patients severely affected by amyotrophic lateral sclerosis (ALS/MND), multiple sclerosis, Parkinson's disease and related disorders (multiple system atrophy progressive supranuclear palsy, MSA-PSP). METHODS: The design followed the Medical Research Council Framework for the evaluation of complex interventions. A phase II randomised controlled trial (RCT) was undertaken comparing an immediate referral to the service (FT, fast track) to a 16-week wait (standard track (ST), standard best practice) using a parallel arm design...
June 2017: BMJ Supportive & Palliative Care
C Lucchiari, A Botturi, A Silvani, E Lamperti, P Gaviani, A Innocenti, C Y Finocchiaro, M Masiero, G Pravettoni
The purpose of this study was to analyze the psychological well-being, quality of life, and cognitive strategies activated by patients with high-grade glioma. We hypothesized that the self-perceived quality of life is modulated by physical and psychological factors and that in order to understand this modulation more psychometric approaches are necessary. Data were collected from a sample of 73 consecutive patients with a histological diagnosis of primary malignant brain cancer (grade IV glioblastoma and grade III anaplastic astrocytoma) hospitalized in a specialized Italian center...
December 2015: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
Lena Wettergren, Mathilde Hedlund Lindberg, Åsa Kettis, Bengt Glimelius, Lena Ring
BACKGROUND: The study aimed to investigate the meaning patients assign to two measures of quality of life: the Schedule for Evaluation of Individual Quality of Life Direct Weighting (SEIQoL-DW) and the SEIQoL-DW Disease Related (DR) version, in a clinical oncology setting. Even though the use of quality of life assessments has increased during the past decades, uncertainty regarding how to choose the most suitable measure remains. SEIQoL-DW versions assesses the individual's perception of his or her present quality of life by allowing the individual to nominate the domains to be evaluated followed by a weighting procedure resulting in qualitative (domains) as well as quantitative outcomes (index score)...
2014: BMC Medical Research Methodology
Sedigheh Khanjari, Ann Langius-Eklöf, Fatemeh Oskouie, Kay Sundberg
PURPOSE: To explore how family caregivers of women with breast cancer in Iran describe the areas in life which are important to their quality of life (QoL), and to determine which areas in life that are influenced by having a family member with breast cancer. METHODS: The study is descriptive and prospective. A total of 88 family caregivers of women newly diagnosed with breast cancer were interviewed using the Schedule for the Evaluation of Individual Quality of Life (SEIQoL-DW) at a time close to diagnosis and then again at 6 months after...
December 2014: European Journal of Oncology Nursing: the Official Journal of European Oncology Nursing Society
Gerhild Becker, Constanze S Merk, Cornelia Meffert, Felix Momm
PURPOSE: Quality of life (QoL) is one of the most important outcomes in cancer care. Although a number of instruments to measure health-related QoL (HRQoL) exist, there are few suitable instruments to measure individual QoL. The best established instrument is the Schedule for the Evaluation of Individual Quality of Life (SEIQoL). The disadvantage of this questionnaire is its use of semi-structured interviews, which are very time-consuming. The purpose of our study was to transform the SEIQoL into an economical instrument that can be used in clinical trials with large samples...
September 2014: Quality of Life Research
F Tramonti, A Gerini, G Stampacchia
STUDY DESIGN: Cross sectional. OBJECTIVES: To examine associations among functional status, health-related and individualised quality of life (QoL) and coping style in subjects with spinal cord injury (SCI). SETTING: Italy. METHODS: Forty subjects attending our hospital-based rehabilitation centre for SCI were administered the Spinal Cord Independence Measure-version III (SCIM-III), the Short Form-36 (SF-36), the Schedule for the Evaluation of Individual QoL-Direct Weighting (SEIQoL-DW) and the Coping Inventory for Stressful Situation (CISS) to assess functional status, health-related QoL, individualised QoL and coping strategies, respectively...
March 2014: Spinal Cord
Julia Dürner, Hans Reinecker, Herbert Csef
OBJECTIVE: The situation of patients with multiple myeloma, whose treatment often implies high-dose chemotherapy and stem cell transplantation that can be associated with severe symptoms and psychological distress, has gained attention in recent psychooncological research. This study followed an idiographic approach in order to identify the areas of life most relevant for the interviewed myeloma patients' quality of life (QoL) as well as their current satisfaction with these. METHODS: 64 patients took part in semi-structured interviews according to the SEIQoL-DW Manual (Schedule for the Evaluation of Individual Quality of Life - Direct Weighting)...
2013: SpringerPlus
Analia Veitz Keenan
DESIGN: Randomised controlled trial. INTERVENTION: Patients from hospital waiting lists who had been edentulous for at least two years and required replacement of conventional dentures were recruited. Baseline quality of life and satisfaction measures were taken and all patients were provided with new conventional complete dentures (CCDs) that they wore for three months, at which point they were reassessed using the same measures. Patients were then randomly assigned either to continue with CCDs (control) or to have implant-retained overdentures (IODs) made (test group)...
March 2013: Evidence-based Dentistry
Kay K Sundberg, Lena Wettergren, Per Frisk, Johan Arvidson
BACKGROUND: Chronic health conditions are known to be both abundant and severe after pediatric hematopoietic stem cell transplantation (SCT). The present objective was to investigate the impact of disease and treatment on individual QoL and health-related quality of life (HRQoL) in long-term survivors of childhood lymphoblastic malignancy treated with conventional therapy versus SCT. PROCEDURE: Survivors of lymphoblastic malignancy treated with (n = 18) or without (n = 52) SCT were recruited a median follow-up time of 18 and 14 years, respectively...
August 2013: Pediatric Blood & Cancer
Alison Orrell, Kevin McKee, Judith Torrington, Sarah Barnes, Robin Darton, Ann Netten, Alan Lewis
Well-designed housing is recognised as being an important factor in promoting a good quality of life. Specialised housing models incorporating care services, such as extra care housing (ECH) schemes are seen as enabling older people to maintain a good quality of life despite increasing health problems that can accompany ageing. Despite the variation in ECH building design little is known about the impact of ECH building design on the quality of life of building users. The evaluation of older people's living environments (EVOLVE) study collected cross-sectional data on building design and quality of life in 23 ECH schemes in England, UK...
May 2013: Health & Place
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