RESUMEN
PURPOSE: The aim of this study was to investigate patient experiences of living with monoclonal gammopathy of undetermined significance (MGUS). Living with a premalignant condition such as MGUS may elicit negative psychosocial effects including increased anxiety and fear of progression to cancer. To date, no study utilising qualitative methodology has explored the lived experiences of MGUS patients. METHODS: Data was collected via two focus groups and six telephone interviews. MGUS patients (n=14) were recruited via nurse-led haematology telephone-clinics in Northern Ireland. Interviews were transcribed verbatim and the data subjected to thematic analysis. OUTCOME: Thematic analysis identified 3 overarching themes; (1) The psychosocial impact of an MGUS diagnosis, (2) Knowledge of MGUS and (3) Experiences of MGUS health services. Patients with MGUS reported experiencing poor psychological adjustment to their condition particularly at the point of diagnosis and approaching follow-up appointments. Feelings of isolation, poor information-provision, increased uncertainty and limited psychosocial support for MGUS patients were also reported. Patients did however reflect positively on their experience of being followed up via nurse-led telephone clinics. CONCLUSIONS: Provision of patient friendly information guides at diagnosis, and additional psychosocial support services such as nurse-led telephone clinics and coordinated patient groups may help MGUS patients adjust better to their diagnosis and in doing so improve quality of life in this patient population.
Asunto(s)
Actitud Frente a la Salud , Gammopatía Monoclonal de Relevancia Indeterminada/psicología , Pacientes/psicología , Lesiones Precancerosas/psicología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Gammopatía Monoclonal de Relevancia Indeterminada/enfermería , Irlanda del Norte , Pacientes/estadística & datos numéricos , Lesiones Precancerosas/enfermería , Investigación CualitativaRESUMEN
BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly, CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP, their family, and health professionals can be challenging. The use of a personal health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational, and professional barriers. The aim of this realist review is to identify the factors, which help or hinder the use of PHRs with CYP living with a complex health condition. METHODS: Systematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library, and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tool. RESULTS: Nine articles were included. Contextual factors, which helped implementation, included the CYP having a high perception of need for a PHR and a high level of desire for self-management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of health care condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their health care. Outcomes for CYP included improved self-advocacy and communication. CONCLUSION: Clearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation.
Asunto(s)
Registros de Salud Personal/psicología , Aceptación de la Atención de Salud , Adolescente , Niño , Enfermedad Crónica/psicología , Enfermedad Crónica/terapia , Comunicación , Conocimientos, Actitudes y Práctica en Salud , Investigación sobre Servicios de Salud/métodos , Humanos , Defensa del Paciente/psicología , Relaciones Profesional-Paciente , Autocuidado , Adulto JovenRESUMEN
BACKGROUND: Recombinant tissue plasminogen activator (rT-PA) is an effective treatment for acute ischaemic stroke when given within 3h of symptom onset but can be delayed as patients wait for a diagnosis. The ROSIER assessment tool (Fig. 1) has been found to be effective in diagnosing stroke but to date has only been tested when used by doctors. OBJECTIVE: To compare registered nurses' ability to diagnose stroke using the ROSIER assessment tool with doctors' ability to diagnose stroke using traditional neurological assessment. DESIGN, SETTING, AND PARTICIPANTS: A prospective audit of all suspected stroke patients (n=106) admitted to the stroke unit of a district general hospital over an eight month period, assessed by registered nurses trained to use the ROSIER assessment tool to identify stroke. MAIN OUTCOME MEASURES: Time from admission to the stroke unit until initial assessment by doctors and registered nurses. Comparison of initial diagnosis by doctors and registered nurses with final diagnosis by a consultant for stroke. RESULTS: Of 106 suspected stroke patients, 78 (73.5%) had a final diagnosis of stroke or transient ischaemic attack (TIA) and 28 (26.4%) had an alternative diagnosis. Six patients with TIA were subsequently excluded as they were asymptomatic at the time of assessment, leaving 100 participants in the validation phase of the study. Using the ROSIER tool registered nurses achieved a diagnostic sensitivity for stroke of 98% (95% confidence interval 88-99), positive predictive value (PPV) 83% (95% confidence interval 73-90). Doctors using standard neurological assessment had a similar diagnostic sensitivity of 94% (95% confidence interval 86-98), PPV 80% (95% confidence interval 70-88). The mean time from initial assessment by registered nurses using the ROSIER tool, until assessment by doctor on the stroke unit was 75 min (SD=65.8 min). CONCLUSIONS: Registered nurses working on a stroke unit using the ROSIER assessment tool are able to diagnose stroke with a degree of accuracy comparable to doctors using clinical neurological assessment. Prompt assessment of suspected stroke patients by registered nurses using the ROSIER tool could reduce delays in eligible stroke patients being assessed for rT-PA treatment.