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Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research.

ABSTRACT: Research-derived evidence about the impact of sickle cell disease (SCD) on the lives of affected adults is lacking. We conducted formative research to provide the basis for a comprehensive description of how SCD affects the lives of adults, with the goal of developing a SCD-specific quality-of-life measurement system.We conducted a comprehensive literature review of patient-reported outcomes, followed by a series of focus groups and structured individual interviews with adults with SCD (n=122) and their health care providers (n=15).We reviewed 473 abstracts and included 86 articles in the final review. The literature revealed broad categories of the impact of SCD and its treatment on the lives of adults-pain; emotional distress; social-role functioning; overall quality-of-life; and quality of care. We classified 1213 incidents from the focus groups and interviews into a taxonomy (16 domains) that met the criterion for saturation and was demonstrated to be reliable for the classification of incidents. The final conceptual model was built upon the taxonomy.Our conceptual model was similar to previous models with the effects of pain predominating, interwoven with emotional distress, quality of care, and stigmatization. We found a broad range of emotions reflected, including positive effects of SCD. Items for the quality-of-life measure were derived from the taxonomy and the conceptual model may be of use in generating hypotheses for clinical research and improving understanding for clinicians of the lived experience of adults with SCD.

SUBMITTER: Treadwell MJ

PROVIDER: S-EPMC4993284 | biostudies-literature | 2014 Oct

REPOSITORIES: biostudies-literature

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Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research.

Treadwell Marsha J MJ Hassell Kathryn K Levine Roger R Keller San S

The Clinical journal of pain 20141001 10

<h4>Objectives</h4>Research-derived evidence about the impact of sickle cell disease (SCD) on the lives of affected adults is lacking. We conducted formative research to provide the basis for a comprehensive description of how SCD affects the lives of adults, with the goal of developing a SCD-specific quality-of-life measurement system.<h4>Methods</h4>We conducted a comprehensive literature review of patient-reported outcomes, followed by a series of focus groups and structured individual interv ...[more]

PMID: 24300219

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Project description:BackgroundYoung people's experiences of healthcare as they move into adult services can have a major impact on their health, and the transition period for young people with sickle cell disease (SCD) needs improvement. In this study, we explore how young people with SCD experience healthcare during this period of transition.MethodsWe conducted a co-produced longitudinal qualitative study, including 80 interviews in 2016-2017 with young people with SCD aged 13-21 (mean age 16.6) across two cities in England. We recruited 48 participants (30 female, 18 male): 27 interviews were one-off, and 53 were repeated 2-3 times over approximately 18 months. We used an inductive analytical approach, combining elements of Grounded Theory and thematic analysis.ResultsParticipants reported significant problems with the care they received in A&E during painful episodes, and in hospital wards as inpatients during unplanned healthcare. They experienced delays in being given pain relief and their basic care needs were not always met. Participants said that non-specialist healthcare staff did not seem to know enough about SCD and when they tried to work with staff to improve care, staff often seemed not prepared to listen to them or act on what they said. Participants said they felt out of place in adult wards and uncomfortable with the differences in adult compared with paediatric wards. Because of their experiences, they tried to avoid being admitted to hospital, attempting to manage their painful episodes at home and accessing unplanned hospital care only as a last resort. By contrast, they did not report having problems within SCD specialist services during planned, routine care.ConclusionsOur study underscores the need for improvements to make services youth-friendly and youth-responsive, including training staff in SCD-specific care, compassionate care and communication skills that will help them elicit and act on young people's voices to ensure they are involved in shaping their own healthcare. If young people are prevented from using transition skills (self-management, self-advocacy), or treated by staff who they worry do not have enough medical competency in their condition, they may well lose their trust in services, potentially compromising their own health.

Project description:Today's health care environment encourages health care consumers to take an active role in managing their health. As digital natives, young educated adults do much of their health information management through the Internet and consider it a valid source of health advice. However, the quality of information on health websites is highly variable and dynamic. Little is known about the understandings and perceptions that young educated adults have garnered on the quality of information on health websites used for health care-related purposes.To fill this gap, the aim of this study was to develop a conceptual framework of health website information quality with quality dimensions (ie, criteria) and associated quality drivers (ie, attributes) specified in the context of young educated adults' use of health websites for health care-related purposes. This aim was achieved by (1) identifying information quality dimensions of health websites from the perspective of young educated adults; (2) identifying the importance ratings of these quality dimensions; and (3) constructing a framework of health website information quality with quality dimensions and associated drivers specified in the context of young educated adults' use of health websites for health care-related purposes.The study employed both qualitative and quantitative methods. Methods included semistructured group interviews and an individual quality assessment exercise grounded in visiting various websites and responding to Likert scale questions regarding the importance ratings of information quality dimensions and open-ended questions with specifying website quality drivers. Study participants included junior and senior undergraduate and graduate students in business, allied health, and public health majors. Qualitative, open-coding procedures were used to develop the conceptual framework reflecting the participants' means of assessing information quality on health websites.Five dimensions of information quality for health websites were identified: Completeness of information, Understandability of information, Relevance of information, Depth of information, and Accuracy of information. Completeness of information and Understandability of information were rated as the two most important quality dimensions by the study participants. Results indicated that these five information quality dimensions for health websites were supported by the following main driver themes: Content, Design, Links, Consumer resources, Search functionality, Supporting references, User focus, Content FAQ, Open access, Policy statements, and Site performance.This study contributes to the literature by developing a health website information quality conceptual framework with quality dimensions and associated drivers specified for a young educated adult population. The detailed quality drivers supporting the corresponding quality dimensions provide a rich picture of young educated adults' perceptions on health website information quality. This framework can be used to guide the development of health websites, as well as the foundation for a means to evaluate health information from existing health websites with young educated adults as the target audience.

Project description:ObjectiveTo systematically describe the use and outcomes of Patient-Reported Outcomes Measurement Information System (PROMIS) measures in clinical studies in populations with stroke.Data sourcesA systematic search on the use of PROMIS measures in clinical stroke studies in 9 electronic databases.Study selectionStudies had to be original, reporting on outcome data using PROMIS measures in populations with stroke (ischemic and/or hemorrhagic), from January 1st, 2007. Initially, 174 unique studies met the inclusion criteria. In 2 steps, titles, abstracts and full-text articles were screened for eligibility (2 authors independently).Data extractionFrom the selected articles, study characteristics, type of PROMIS measures, and its outcomes were extracted by 2 authors independently. The authors discussed their views to achieve consensus. A third author was consulted if necessary.Data synthesisIn total, 27 studies (24,366 patients) were included, predominantly from the United States (22); most study populations were hospital-based (20); the number of patients ranged from 30-3283. In general, patients had no or mild symptoms (median modified Rankin scale 1). Two different generic PROMIS measures were reported (PROMIS Global Health, PROMIS 29) and 9 PROMIS measures focusing on specific domains (sleep, pain, physical functioning, self-efficacy, satisfaction with social roles, depression, anxiety, cognition, fatigue). These match the International Classification of Functioning, Disability, and Health (ICF) domains mentioned in the Core Set for Stroke. The measures were administered 1-55 months after stroke. Outcome data are provided. Pooling of data was not achieved because of a large variety in study characteristics (inclusion criteria, follow-up moments, data processing).ConclusionsThe PROMIS measures in this review could be relevant from a patient's perspective, covering ICF core set domains for patients with stroke. The large variety in study characteristics hampers comparisons across populations. Many different outcome measures are used to report results of stroke rehabilitation studies.

Project description:BackgroundPrevious studies in patients with a mitochondrial disease (MD) highlight the high prevalence of cognitive impairments, fatigue, depression, and a lower quality of life (QoL). The relationship with biological and physiological factors remains complex. The aim of this study is to investigate the status of and interrelationships between biological and physiological functioning, cognitive functioning as well as fatigue, depression, societal participation, health perceptions, and QoL, by using the Wilson and Cleary conceptual disease model, adapted to MD.MethodsPatients with a genetically confirmed MD were included. The following health concepts in MD were investigated according to the conceptual model: (1) Biological and physiological: disease manifestation (Newcastle Mitochondrial Disease Adult Scale), (2) Symptom status: cognitive functioning, patient reported fatigue and depressive symptoms, (3) Functional health: societal participation, (4) Patient reported health perceptions, and (5) Overall QoL. Data were compared to healthy normative data and/or data from other patient groups. Correlations as well as a hierarchical regression analysis were performed to assess the relations between the different levels of health concepts in the conceptual model.ResultsOf the 95 included patients, 42% had a severe disease manifestation. Comparable or worse than normative data and other patient groups, 35% reported cognitive impairments, 80% severe fatigue, and 27% depressive symptoms. Patients experienced impairments in societal participation and QoL. Disease manifestation was significantly correlated with cognitive functioning, societal participation, physical functioning and overall QoL, but not with fatigue or depressive symptoms. Almost all outcome measures regarding functional health, health perceptions and QoL were correlated with symptom status variables. Overall QoL was significantly predicted by fatigue and physical functioning.ConclusionsSymptom status is related to the functional health, health perceptions and QoL in patients with MD. Moreover, fatigue and physical functioning are important contributors to the overall QoL of MD patients. In order to provide adequate patient care it is important to have a broad view on patients' functioning, not only by providing a proper clinical assessment, but also to screen for symptom status; cognitive functioning, fatigue and depression.

Dataset Information

Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research.

Publications

Adult sickle cell quality-of-life measurement information system (ASCQ-Me): conceptual model based on review of the literature and formative research.

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