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Introduction: Maintaining well-being is crucial, especially in challenging conditions, considering the common public health issue of dental caries. Within the context of adolescent oral health, this research explores the techniques employed by dental professionals to potentially foster hope -a positive manner that promotes well-being- in adolescents during consultations, opening a window into the realm of patient engagement and well-being. Materials and methods: Data were collected through observations conducted at public dental clinics in Norway, with the participation of three dental professionals and four adolescents between the ages of 12 and 15 years. The data were analyzed using thematic analysis. Practices were observed from dental professionals in their interactions with adolescents, which align with features of hope. Result: Three core themes were identified: (1) bonding strategies; (2) verbal and non-verbal strategies for creating positive relationships; and (3) adolescents' empowerment in dental consultations. Conclusion: Although a new concept within oral health promotion, it seems that dental professionals in this study were observed to be facilitating hope in adolescents when they were providing their dental care. Consideration should be given to the potential for future approaches to be developed for use in dental consultations to facilitate hope strategically. While these approaches are likely to contribute to improving patient-centredness, consideration is needed of challenges and barriers to their implementation.
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BACKGROUND: Establishing positive oral health behaviours during adolescence should be a key priority to improve lifelong oral health. However, changing adolescent behaviours is known to be a challenge. Motivational interviewing (MI) is a method of working with patients to activate their motivation for change and has shown promising results within the dental setting. Yet, little is known about the actual experiences and perspectives of Norwegian dental health professionals in delivering motivational interviewing as part of routine care to their young patients. The overall aim of the present study was to explore the implementation of motivational interviewing by dentists and dental hygienists, employed by the Norwegian Public Dental Service, for their adolescent patients. METHODS: As part of the larger #Care4YoungTeeth <3 project, a Norwegian Research Council funded four-year Collaborative Project to Meet Societal and Industry-related Challenges, an online survey was developed and administered to dental personnel (n = 168) in one region of Central Norway. Data were analysed by descriptive statistics and two-sample tests of proportions at the 95% confidence level. RESULTS: A total of 98 dental personnel responded to the survey (response rate 58.3%), of which 37 were dental hygienists (response rate 72.5%) and 61 were dentists (response rate 52.1%). A greater proportion of hygienists reported implementing this intervention compared to dentists (78.4% versus 50.8%; p = 0.007). Similarly, a greater proportion of hygienists (83.8%) stated that they had received training in MI compared to dentists (65.6%; p = 0.051). About 80% of dentists and 90% of dental hygienists felt that they understood the principles of MI. However, only about 45% and 60%, respectively, felt confident in its use. Dental hygienists found MI more usable in their work (p = 0.052), to a greater extent want to use MI (p = 0.002) and found that using MI works well (p < 0.001), as compared to dentists. CONCLUSIONS: A high proportion of dental professionals working within a Norwegian public dental service have received training in MI. However, barriers to implementation for adolescent patients and differences in practice between dentists and hygienists warrant further enquiry.
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Caries Dental , Entrevista Motivacional , Humanos , Adolescente , Caries Dental/prevención & control , Odontólogos , NoruegaRESUMEN
Purpose Deconstructing current definitions of "health literacy (HL)" and "eHealth literacy (eHL)", into the core notion of "understanding health information (HI)", this study provides insights into what promotes and inhibits the understanding of HI for breast cancer patients during cancer patient pathways (CCP) in Norway. Methods Seven well-educated women were interviewed. Through a stepwise deductive-inductive analysis of the transcribed interviews, the following topics were identified: 1) explanations accompanied by drawings, 2) individualized knowledge-based information, 3) information processing capacity, and 4) ambiguity in medical information. Results The women's understanding of HI increased when spoken communication was accompanied by visual illustrations, which served as roadmaps throughout the CPP. Even if HI should be targeted to the patients' individual needs, some HI can be generalized if it refers to established knowledge about the health phenomena. The women described their changing mental and physical status during the CPP and how these changes influenced their understanding of HI. Conclusion The results challenge the idea that HL and eHL are fixed, stable, personal characteristics. On the contrary, HL/eHL, in this case particularly the understanding of HI, depends on the individual (temporary) physical and cognitive capacity of the patient and adaptation in the institutional and private contexts.
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Neoplasias de la Mama , Alfabetización en Salud , Telemedicina , Humanos , Femenino , Alfabetización en Salud/métodos , Neoplasias de la Mama/psicología , Comunicación , NoruegaRESUMEN
BACKGROUND: We report the use of an electronic tool, Eir (Eir Solutions AS, Norway), for symptom registration at home after knee arthroplasty. This electronic tool was used in a randomized controlled trial (RCT) comparing 3 different analgesic regimens with respect to postoperative pain and side effects. OBJECTIVE: The aim of this substudy was to investigate this electronic tool for symptom registrations at home with respect to usability (ie, how easy it was to use) and feasibility (ie, how well the tool served its purpose). METHODS: To assess the tool's usability, all participants were invited to fill out the 10-item System Usability Scale (SUS) after using the tool for 8 days. To assess feasibility, data regarding the participants' ability to use the tool with or without assistance or reminders were collected qualitatively on a daily basis during the study period. RESULTS: A total of 134 patients completed the RCT. Data concerning feasibility of the web-based tool were collected from all 134 patients. The SUS was completed by 119 of the 134 patients; 70.2% (94/134) of the patients managed to use the tool at home without any technical support. All technical challenges were related to the login procedure or internet access. The mean SUS score was 89.6 (median 92.5; range 22.5-100). CONCLUSIONS: This study showed high feasibility and high usability of the Eir web tool. The received reports gave the necessary information needed for both research data and clinical follow-up. TRIAL REGISTRATION: ClinicalTrials.gov NCT02604446; https://www.clinicaltrials.gov/ct2/show/NCT02604446.
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INTRODUCTION: The evidence base for parenteral nutrition (PN) in advanced cancer patients is limited. We studied healthcare providers' (HCPs') experiences with PN in cancer patients, focusing on perceived treatment benefits and challenges. METHODS: An 18-item online survey was emailed to HCPs attending one of three regional palliative care seminars held within a 6-month period. The survey included single-response items, multiple-response items, and free text boxes concerning PN. Descriptive statistics and qualitative thematic content analysis were applied. RESULTS: One hundred and two seminar participants completed the survey. Ninety-three percent were female, 86% were nurses/oncological nurses, and 80% worked in primary care. Respondents reported a well-functioning collaboration across levels of care. They perceived that PN may increase the patients' level of energy, improve the general condition, and reduce eating-related distress. On the downside, HCPs observed burdensome side effects, that the treatment was resource-demanding, and that decisions on PN withdrawal were difficult. CONCLUSION: The study results are based on the perspectives of more than 100 HCPs with comprehensive clinical experience with PN. Their knowledge represents an important experience base for improvement of healthcare services and advanced care planning.
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Objectives: This study aims to explore in depth the meaning and meaning discrepancies among older Norwegian breast cancer survivors in light of the meaning making model by Park (2013). Design: We utilized a qualitative design collecting data using semi-structured interviews of 23 elderly breast cancer survivors 7-8 years after treatment. The interviews followed an interview guide structured along three main themes: "everyday life activities," "follow-up-care experiences" and "health status and QoL." Results: Several health problems were reported by the women in the aftermaths of the disease, such as sleeping problems, pain, and fatigue-including cognitive and emotional impairments. Meaning discrepancies were concentrated on six main themes: shifting perspectives and priorities, growing sense of autonomy, widening the limits of normality, dissociating oneself from the disease, embracing alternative health services, and feeling lucky. The women engaged in a wide range of coping techniques as efforts to change global meaning, and to develop a more positive view on the cancer experience. Common coping efforts across the six main themes were social comparison, denial, positive reappraisal, problem-focused coping, and revaluing ordinary events. Conclusion: Many cancer patients report on unmet needs for help with their meaning making, and the facilitation of meaning making processes is rarely included in the follow-up care of cancer survivors. The findings of the present study may help health care professionals provide care for women who have experienced breast cancer. The concrete knowledge of common coping efforts in the meaning making process may contribute to the development of future interventions and for gaining a deeper understanding for older survivors of breast cancer.
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BACKGROUND: Cancer patient pathways (CPPs) were implemented in Norway in 2015-2017 to advance cancer diagnostics and treatment initiation. The aim of CPPs is to ensure standardized waiting times, but also to strengthen patient participation and shared decision-making. This study investigates how patients enrolled in a CPP experienced shared decision-making. METHODS: This study comprised of 19 individual semistructured interviews with patients who had been enrolled in a CPP at three hospitals in Norway. Twelve patients had breast cancer, four patients had prostate cancer and three patients had malignant melanoma. We analyzed their experiences using a narrative approach. FINDINGS: This study showed how participating in a standardized CPP provided different possibilities for shared decision-making. The patients' narratives of shared decision-making in CPPs included stories from the three cancer diagnoses through the following themes: (1) The predictable safeness of standardizations, (2) the ambivalence of making decisions and (3) opposing standardizations and pushing for action. CONCLUSION: Standardized CPPs provided patients with predictability and safety. Shared decision-making was possible when the cancer diagnoses supported preference-sensitive treatment options. Balancing standardizations with individualized care is necessary to facilitate patient participation in CPPs, and the possibility of shared decision-making needs to be discussed for each specific CPP. PATIENT OR PUBLIC CONTRIBUTION: A service user representative from the Norwegian Cancer Society participated in designing this study.
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Neoplasias de la Mama , Toma de Decisiones Conjunta , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/terapia , Toma de Decisiones , Humanos , Masculino , Noruega , Evaluación del Resultado de la Atención al Paciente , Participación del PacienteRESUMEN
OBJECTIVE: Standardised cancer patient pathways (CPP) are implemented within cancer care with an aim to ensure standardised waiting times for diagnosis and treatment. This article investigates how patients in Norway experience waiting times within a CPP. METHODS: Qualitative semi-structured interviews with 19 patients who had been through CPP for breast cancer, prostate cancer or malignant melanoma in Norway. RESULTS: Few patients knew about the term CPP but trusted that waiting times were standardised to decrease mortality. Their experiences of waiting depended on their expectations as much as the period they waited. Patients generally felt safe about the timing of treatment, but not all expectations of a rapid response from health services were met. Short waiting times were interpreted as a sign of urgency, and a change of pace between urgent action and prolonged periods of waiting were disturbing. CONCLUSIONS: Patients are comforted by knowing they are within a structured CPP that ensures rapid diagnosis and start of treatment. CPPs still need to be improved to avoid delays, allow for adaptions to patient needs, and include more information to avoid stress.
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Neoplasias de la Mama , Listas de Espera , Neoplasias de la Mama/diagnóstico , Neoplasias de la Mama/terapia , Humanos , Masculino , Noruega , Evaluación del Resultado de la Atención al Paciente , Investigación CualitativaRESUMEN
BACKGROUND: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. METHODS: A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann's qualitative method for analysis. RESULTS: Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: "Personal factors", "Healthcare professionals" and "Organization" of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. CONCLUSION: Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.
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Aflicción , Cuidadores , Neoplasias/enfermería , Cuidados Paliativos , Población Rural , Cuidado Terminal , Hijos Adultos , Femenino , Servicios de Atención de Salud a Domicilio , Humanos , Masculino , Noruega , Padres , Investigación Cualitativa , EspososRESUMEN
ABSTRACT: Pain after total knee arthroplasty is a prevalent condition. This study compared the effectiveness of tapentadol extended-release (ER) 50 mg × 2, oxycodone controlled-release (CR) 10 mg × 2, and placebo, as added to a multimodal analgesic regime both in-hospital and at home the first week after total knee arthroplasty. The study was randomized and blinded for investigators, staff, outcome assessors, and patients. Follow-up included pain intensity on mobilization, pain at rest, worst pain in the previous 24 hours, and adverse effects measured on 0 to 10 numerical rating scales. A total of 134 patients in 3 study groups received their allocated intervention and were included in the analysis. The primary outcome pain on mobilization the 7 first postoperative days reported as area under the curve was 528.1 (SD 267.5, interquartile range (IQR) 356.6-665.4) for placebo, 427.2 (SD 203.9, IQR 303.6-544.3) for tapentadol ER, and 507.9 (SD 243.7, IQR 292.4-686.8) for oxycodone CR (P = 0.12). With the exception of constipation being less prevalent in the tapentadol ER group (P = 0.02), we found no significant differences between treatment groups for the secondary outcomes. Tapentadol ER as an add-on to multimodal analgesia did not significantly improve pain relief when compared to oxycodone CR or placebo. Constipation was lowest in the tapentadol ER group.
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Artroplastia de Reemplazo de Rodilla , Osteoartritis de la Rodilla , Analgésicos Opioides/uso terapéutico , Artroplastia de Reemplazo de Rodilla/efectos adversos , Preparaciones de Acción Retardada/uso terapéutico , Método Doble Ciego , Humanos , Osteoartritis de la Rodilla/tratamiento farmacológico , Oxicodona/uso terapéutico , Dolor Postoperatorio/tratamiento farmacológico , Fenoles/uso terapéutico , Tapentadol/uso terapéuticoRESUMEN
OBJECTIVE: Extensive research has documented the negative nutritional impact of head neck cancer (HNC) treatment, but few studies have addressed the patients' experiences. The purpose of this study was to describe how patients with HNC experience the nutritional situation and perceive nutritional support from diagnosis to the post-treatment phase. METHODS: Patients with HNC were recruited from a randomised pilot study. Individual interviews were conducted after radiotherapy with 10 participants aged 49 - 70 years and analysed by qualitative content analysis. RESULTS: Undergoing surgery was experienced as a poor nutritional starting point for the upcoming radiotherapy. During radiotherapy, increasing side effects made the participants customise their meals to improve food intake. About halfway through radiotherapy, virtually no food intake was experienced and hospital admissions and initiations of tube-feeding occurred in this period. Oral nutritional supplements were recommended for all, but eventually became unbearable to ingest. When radiotherapy was finally completed, the participants felt discouraged about the persistent side effects preventing them from resume eating. The participants missed tailored information about development of side effects and involvement of a dietitian when reflecting on the treatment-period. CONCLUSION: The comprehensive nutritional problems experienced by patients with HNC require early nutritional assessments and improved individually tailored nutritional support.
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Actitud Frente a la Salud , Neoplasias de Cabeza y Cuello/psicología , Neoplasias de Cabeza y Cuello/terapia , Estado Nutricional , Apoyo Nutricional/psicología , Radioterapia/efectos adversos , Anciano , Dieta , Suplementos Dietéticos , Ingestión de Alimentos , Nutrición Enteral , Conducta Alimentaria , Femenino , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , Disección del Cuello/efectos adversos , Noruega , Evaluación Nutricional , Nutricionistas , Proyectos Piloto , Investigación CualitativaRESUMEN
BACKGROUND: The Patient-Generated Subjective Global Assessment (PG-SGA) is a patient-reported instrument for assessment of nutrition status in patients with cancer. Despite thorough validation of PG-SGA, little has been reported about the way patients perceive, interpret, and respond to PG-SGA. The aim of this study was to investigate how patients interpret the patient-generated part of the PG-SGA, called PG-SGA Short Form. METHODS: Purposive sampling was used to identify participants that had experienced weight loss and/or reduced dietary intake and/or had a low body mass index. Data were collected from 23 patients by combining observations of patients filling in the PG-SGA Short Form, think-aloud technique and structured interviews, and analyzed qualitatively using systematic text condensation. RESULTS: Most of the participants managed to complete the PG-SGA Short Form without problems. However, participant-related and questionnaire-related sources of misinterpretation were identified, possibly causing misinterpretations or wrong/missing answers. Participants either read too fast and skipped words, or they struggled to find response options that were suitable for covering their entire situation perfectly. The word "normal" was perceived ambiguous, and the word "only" limited the participants' possibility to accurately describe their food intake. Long recall periods in the questions and two-pieced response options made it difficult for patients to select only one option. CONCLUSION: The results of this study provide a unique patient perspective of using the PG-SGA Short Form and valuable input for future use and revisions of the form. The identified sources of misunderstanding could be used to develop a standardized instruction manual for patients and health care personnel using the PG-SGA Short Form.
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BACKGROUND: Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants' experiences and opinions were investigated as part of this development process. METHODS: The aim of this qualitative study was to explore and describe health care professionals' experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation. RESULTS: In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals' carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers' needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care. CONCLUSIONS: Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.
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Cuidadores/psicología , Personal de Salud/normas , Apoyo Social , Adulto , Anciano , Cuidadores/estadística & datos numéricos , Atención a la Salud/métodos , Atención a la Salud/normas , Educación/métodos , Femenino , Grupos Focales/métodos , Personal de Salud/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Evaluación de Necesidades , Noruega , Investigación CualitativaRESUMEN
PURPOSE: Eir version 3 (V3) is an electronic tool for administration of patient-reported outcome measures (Eir-Patient) that immediately presents patient scores on the physician's computer (Eir-Doctor). Perceived usability is an important determinant for successful implementation. The aim of this study was to answer the following research question evaluated at the cancer outpatient clinics, in the patients' home, and at general practitioners' (GPs) offices: What are the number, type, and severity of usability issues evaluated by the patient (Eir-Patient module) and by the physician (Eir-Doctor module)? METHODS: A usability evaluation using observations, think-aloud sessions, individual interviews and focus group interviews in cancer patients and their physicians was conducted. Identified usability issues were graded on a severity scale from 1 (irritant) to 4 (unusable). RESULTS: Overall, 73 Eir registrations were performed by 37 patients, and used by 17 physicians in clinical consultations. All patients were able to complete the Eir-Patient symptom registration. Seventy-two usability issues were identified. None of them were graded as unusable. For the Eir-Patient module, 62% of the identified usability issues was graded as irritant (grade 1), 18% as moderate (grade 2), and 20% as severe (grade 3). For the Eir-Doctor module, 46% of the identified usability issues were graded as irritant, 36% as moderate and 18% as severe. CONCLUSIONS: In the updated Eir version, issues in the severe and moderate categories have been changed, to optimize the usability of using real-time PROMs in clinical practice.
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Neoplasias/diagnóstico , Neoplasias/terapia , Medición de Resultados Informados por el Paciente , Interfaz Usuario-Computador , Anciano , Computadores , Registros Electrónicos de Salud , Femenino , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Atención Dirigida al Paciente/métodos , MédicosRESUMEN
BACKGROUND: Caring for advanced cancer patients affects carers' psychological and physical health. Resilience has been defined as "the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat." AIM: The aim of this study was to explore factors promoting carer resilience, based on carers' experiences with and preferences for health care provider support. DESIGN: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. SETTING/PARTICIPANTS: Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. RESULTS: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers-a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer-patient relation. CONCLUSION: Health care providers may enhance carers' resilience by a series of simple interventions. Education should address carers' support needs and resilience. Systematic assessment of carers' support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.
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Cuidadores/psicología , Familia/psicología , Personal de Salud/psicología , Cuidados Paliativos/psicología , Relaciones Profesional-Familia , Resiliencia Psicológica , Cuidado Terminal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Actitud del Personal de Salud , Femenino , Humanos , Masculino , Persona de Mediana Edad , Investigación CualitativaRESUMEN
BACKGROUND: Knowledge about disease and treatment is necessary before patients can consent to treatment. One of the few established instruments for evaluating whether sufficient information has been provided, is the EORTC QLQ-INFO25 questionnaire which was developed to measure how patients perceive information. The aim of this study was to investigate whether cancer patients' level of knowledge about their disease and treatment was associated with their perception of and satisfaction with the information. METHODS: Breast cancer patients referred for adjuvant chemotherapy and prostate cancer patients referred for curative radiotherapy were included. Level of knowledge about their disease and treatment was measured using study-specific questionnaires. Patients' perception of and satisfaction with the received information was assessed using EORTC QLQ-INFO25. Assessments were done before the first consultation with an oncologist (T1), after the consultation (T2) and 8 weeks after start of treatment (T3). RESULTS: Ninety eight patients were enrolled. Patients with higher education, daily Internet access and in paid employment had the highest baseline knowledge scores. The mean knowledge score increased significantly (T1: 16.4; T2: 20.8; T3: 21.3; p < 0.001.). During the same period, the patients reported on the INFO25 a significant, positive increase in how much information they had received, and that they were more satisfied with the information. CONCLUSIONS: Patients' knowledge increased significantly during the study period, and they reported that they felt better informed and were more satisfied with the information, suggesting that EORTC QLQ-INFO25 might be used to evaluate cancer patients' level of knowledge about their disease and treatment. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT01699672 . Date of registration: September 21, 2012.
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Conocimientos, Actitudes y Práctica en Salud , Neoplasias/epidemiología , Adulto , Anciano , Anciano de 80 o más Años , Femenino , Humanos , Estudios Longitudinales , Masculino , Persona de Mediana Edad , Neoplasias/diagnóstico , Neoplasias/psicología , Neoplasias/terapia , Percepción , Estudios Prospectivos , Encuestas y CuestionariosRESUMEN
PURPOSE: Immediate transfer of patient-reported outcome measures (PROMs) for use in medical consultations is facilitated by electronic assessments. We aimed to describe the rationale and development of Eir version 3 (EirV3), a computer-based symptom assessment tool for cancer, with emphasis on content and user-friendliness. METHODS: EirV3's specifications and content were developed through multiprofessional, stepwise, and iterative processes (from 2013 to 2016), with literature reviews on traditional and electronic assessment and classification methods, formative iterative usability tests with end-users, and assessment of patient preferences for paper versus electronic assessments. RESULTS: EirV3 has the following two modules: Eir-Patient for PROMs registration on tablets and Eir-Doctor for presentation of PROMs in a user-friendly interface on computers. Eir-Patient starts with 19 common cancer symptoms followed by specific, in-depth questions for endorsed symptoms. The pain section includes a body map for pain location and intensity, whereas physical functioning, nutritional intake, and well-being are standard questions for all. Data are wirelessly transferred to Eir-Doctor. Symptoms with intensity scores ≥ 3 (on a 0 to 10 scale) are marked in red, with brighter colors corresponding to higher intensity, and supplemented with graphs displaying symptom development over time. Usability results showed that patients and health care providers found EirV3 to be intuitive, easy to use, and relevant. When comparing PROM assessments on paper versus tablets (n = 114), 19% of patients preferred paper, 41% preferred tablets, and 40% had no preference. Median intraclass correlation coefficient between paper and tablets (0.815) was excellent. CONCLUSION: Iterative test rounds followed by continuous improvements led to a user-friendly, applicable symptom assessment tool, EirV3, developed for and by end-users. EirV3 is undergoing international testing of clinical and cross-cultural adaptability.
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Oncología Médica/métodos , Medición de Resultados Informados por el Paciente , Programas Informáticos , Adulto , Anciano , Anciano de 80 o más Años , Registros Electrónicos de Salud , Femenino , Humanos , Masculino , Registros Médicos , Persona de Mediana Edad , Interfaz Usuario-ComputadorRESUMEN
OBJECTIVE: To compare patients' perceptions and preferences of two different versions of informed consent documents. METHODS: Patients eligible for a trial of palliative chemotherapy for lung cancer (N = 22) were randomly assigned to receive either an original consent document or a shortened version written for the present study. Semi-structured interviews were conducted after the patients had read the consent documents. The interviews were transcribed verbatim and analysed using qualitative content analysis. RESULTS: Few differences between the two groups were found with respect to patients' assessment of the amount of content and the most important information in the documents. Information about disease and treatment seemed to be of most interest for the patients, while information about research aspects of the study such as financing, confidentiality and publishing (formalities) was judged to be of lesser relevance. Two patients who read the original document indicated that they treated the formalities as secondary. CONCLUSION: Patients seemed to pay little attention to the research aspects, and thus risked to misunderstand the main point of the consent document. PRACTICE IMPLICATIONS: The structure of consent documents should clarify for the readers that they are asked to take part in research, and that participation is voluntary.