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BACKGROUND: Individuals with Parkinson's disease (PD) report a diminished perceived functional autonomy as their condition progresses. For those seeking emergency care, it is unknown whether the patient-physician relationship is instrumental in respecting patient autonomy. This study evaluated patient autonomy ideals in individuals with PD requiring emergency care and the perceived support for autonomy from emergency department physicians. METHOD: Individuals with PD (n = 36, average age 78.1 years) were surveyed using the Ideal Patient Autonomy questionnaire (IPA) and the Health Care Climate Questionnaire (HCCQ). A multivariable regression analysis assessed whether patients' Hoehn and Yahr stage and IPA questionnaire results predicted HCCQ items. RESULTS: The IPA questionnaire revealed that individuals with PD in need of emergency care emphasize the significance of medical expertise (IPA 'doctor should decide' theme 0.71) in decision-making and their desire to be fully informed about all potential risks (IPA 'obligatory risk information' theme 0.71). The average HCCQ values showed a decreasing trend across Hoehn and Yahr stages 1 to 5: 6.19, 6.03, 5.83, 5.80, and 5.23, respectively. HY scale values also influenced HCCQ items related to the physician's role. CONCLUSION: In our cohort, individuals with Parkinson's disease tend to rely on medical expertise for decision-making and prioritize complete risk information during emergency care. However, this autonomy support diminishes as functional disability levels increase.
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RESEARCH QUESTION: From a value-based healthcare (VBHC) perspective, does an assessment of clinical outcomes and intervention costs indicate that providing cognitive behavioural therapy (CBT) or mindfulness to women seeking fertility treatment add value compared with no such intervention? DESIGN: Proof-of-concept business case based on a VBHC perspective that considers clinical outcomes and costs. Potential effects on psychological and fertility outcomes were based on existing research. Cost outcomes were estimated with a costing model for the Dutch fertility treatment setting. RESULTS: Thirty-two studies were identified; 13 were included. Women who received CBT had 12% lower anxiety, 40% lower depression and 6% higher fertility quality of life; difference in clinical pregnancy rates was six percentage points (CBT [30.2%]; control [24.2%]); difference in fertility discontinuation rates was 10 percentage points (CBT [5.5%]; control [15.2%]). Women who received training in mindfulness had 8% lower anxiety, 45% lower depression and 21% higher fertility quality of life; difference in mean clinical pregnancy rate was 19 percentage points (mindfulness [44.8%]; control [26.0%]). Potential total cost savings was about 1.2 million per year if CBT was provided and 11 million if mindfulness was provided. Corresponding return on investment for CBT was 30.7%, and for mindfulness 288%. Potential cost benefits are influenced by the assumed clinical pregnancy rates; such data related to mindfulness were limited to one study. CONCLUSIONS: The provision of CBT or mindfulness to women seeking fertility treatment could add value. Higher quality primary studies are needed on the effect of mindfulness on clinical pregnancy rates.
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Terapia Cognitivo-Conductual , Humanos , Femenino , Embarazo , Terapia Cognitivo-Conductual/economía , Atención Plena/economía , Calidad de Vida , Intervención Psicosocial/economía , Depresión/terapia , Índice de Embarazo , Adulto , Ansiedad/terapia , Análisis Costo-BeneficioRESUMEN
Parkinson's disease characteristics can create a self-perceived sense of stigmatization and disapproval by others, thereby affecting self-perceived autonomy. This study investigated the metaphors related to the loss of autonomy and stigma in stories and drawings of Parkinson's disease. We compare a contemporary first-person illness narrative and -drawing from a person with Parkinson's disease, with two novels (Jonathan Franzen's The Corrections and Claudia Piñeiro's Elena Knows), a graphic novel (Peter Dunlap-Shohl's My Degeneration: A Journey Through Parkinson's), a non-fiction book (Oliver Sacks' Awakenings) and a first-person illness narrative (John Palfreman's The Bright Side of Parkinson's). Metaphors in the patient narrative, novels, and non-fiction work were reviewed and a list of themes or categorizations common to 2 of the metaphors was generated. Parkinson's disease metaphors indicate a 'Parkinson's prism' thereby depicting extreme experiences (24.4%) like a 'fall by mischance', a 'tantrum of selfish misery' or a 'bottomless darkness and unreality' (Table 1). Both novels signify a sense of 'betrayal and disconnection' in the Parkinson's disease experience while non-fiction of Parkinsonism depicts a space in which one feels 'caged and deprived'. This makes the Parkinson's disease narrative a chaos story that could influence the decision to initiate treatment and treatment adherence. We conclude that narrative medicine can help to focus the medical consultations with affected individuals on issues that matter most to them, thereby improving self-perceived autonomy and stigma. As such, it is a critical component of the much-needed move towards personalized medicine in Parkinson's disease, achieved through the reciprocity of thinking with stories.
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Background: Psychology as applied to health and illness has a relatively short history. Nevertheless, that history shows a rapid development of the theoretical models that guide the field over the past 60 years. Core theoretical approaches are concisely reviewed, in the context of Kaplan's paper 'Behavior as the central outcome in health care' (1990), which is used as a model to examine the extent to which these approaches embrace Kaplan's notions. Advances: Empirical studies from the health psychology domain are used, which demonstrate the gains in terms of quality of life and behavioural outcomes in patients with (chronic) somatic diseases. Over a period of some 60 years, theoretical models and core concepts in psychology as applied to health and illness have evolved from psychosomatic views to neuropsychology, quality of life, patient education, self-management, illness perceptions, patient-reported outcome measures (PROMs), shared decision-making (SDM) and health humanities (HH). The more recent models (SDM, HH) appear to align to a considerable degree with adopting 'behavior as the central outcome an outcome in health care'; shared decision-making and health humanities focus on encouraging patients to make sense of and give meaning to their illness in order to attain optimal psychosocial adjustment. Conclusions: In addition to 'behavior as the central outcome in health care', a new definition of the concept of health (i.e. 'the ability to adapt and to self-manage' - Huber et al., 2011) seems to favour patients, healthcare providers, society, and health psychology. Incorporating this concept into medical care may be viewed as a challenge for health psychologists - and as a source of continual struggle with strong biomedical forces.
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Background: Psychedelic-assisted therapy [e.g., with lysergic acid diethylamide (LSD)] has shown promising results as treatment for substance use disorders (SUDs). Previous systematic reviews assessing the efficacy of psilocybin in SUDs only included clinical trials conducted in the last 25 years, but they may have missed clinical trials assessing the efficacy of psilocybin that were conducted before the 1980s, given much research has been done with psychedelics in the mid-20th century. In this systematic review, we specifically assessed the efficacy of psilocybin in patients with a SUD or non-substance-related disorder with no publication date restrictions in our search strategy. Methods: A systematic literature search was performed according to Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) guidelines from the earliest published manuscript up to September 2, 2022, in seven electronic databases, including clinical trials in patients with a SUD or non-substance-related disorder evaluating the efficacy of psilocybin. Results: A total of four studies (six articles, of which two articles were long-term follow-up results from the same trial) were included in this systematic review. Psilocybin-assisted therapy was administered to n = 151 patients in a dose ranging from 6 to 40 mg. Three studies focused on alcohol use disorder, and one study on tobacco use disorder. In a pilot study (n = 10), the percentage of heavy drinking days decreased significantly between baseline and weeks 5-12 (mean difference of 26.0, 95% CI = 8.7-43.2, p = 0.008). In another single-arm study (n = 31), 32% (10/31) became completely abstinent from alcohol (mean duration of follow-up 6 years). In a double-blind, placebo-controlled randomized controlled trial (RCT, n = 95), the percentage of heavy drinking days during the 32-week double-blind period was significantly lower for psilocybin compared to placebo (mean difference of 13.9, 95% CI = 3.0-24.7, p = 0.01). In a pilot study (n = 15), the 7-day point prevalence of smoking abstinence at 26 weeks was 80% (12/15), and at 52 weeks 67% (10/15). Conclusion: Only one RCT and three small clinical trials were identified assessing the efficacy of psilocybin combined with some form of psychotherapy in patients with alcohol and tobacco use disorder. All four clinical trials indicated a beneficial effect of psilocybin-assisted therapy on SUD symptoms. Larger RCTs in patients with SUDs need to evaluate whether psilocybin-assisted therapy is effective in patients with SUD.
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PURPOSE: Scalp cooling can prevent chemotherapy-induced alopecia (CIA). Previously, the post-infusion cooling time (PICT) could be successfully reduced in docetaxel-treated patients from 90 to 45 and 20 min. Therefore, it seems plausible that the PICT can be shortened for paclitaxel-treated patients as well. METHODS: Patients treated with weekly paclitaxel were included in this multi-centre trial and randomly assigned to a PICT of 45 or 20 min. The results were compared to a standard PICT of 90 min, derived from prospective collected data from the Dutch Scalp Cooling Registry. The primary endpoint was the percentage of patients who decide to not wear a wig or head covering. Secondary endpoints were the degree of CIA assessed with the Dean scale for assessment of hair loss; alopecia graded according to NCI CTC toxicity version 4.03 (CTCAE4.03); tolerance of scalp cooling and perceived distress of CIA. RESULTS: Ninety-one patients were enrolled in this study; 74 patients were evaluable for hair loss. Hair preservation was successful in 27 patients (75%) with a PICT of 45 min and in 31 patients (82%) with a PICT of 20 min. There was no difference in success rate with the standard PICT of 90 min (85%, p = 0.29). Similar success rates were seen when using the Dean scale and CTCAE assessment, with no differences between groups (p = 0.12 and p = 0.38). CONCLUSIONS: A 20 min PICT is as effective as 45 and 90 min to prevent weekly paclitaxel-induced alopecia and should be the new standard of care. TRIAL REGISTER: ClinicalTrials.gov Identifier: NCT03266185.
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Antineoplásicos , Neoplasias de la Mama , Hipotermia Inducida , Alopecia/inducido químicamente , Alopecia/prevención & control , Antineoplásicos/efectos adversos , Protocolos de Quimioterapia Combinada Antineoplásica/efectos adversos , Neoplasias de la Mama/etiología , Femenino , Humanos , Hipotermia Inducida/métodos , Paclitaxel/efectos adversos , Estudios Prospectivos , Cuero Cabelludo , Taxoides/efectos adversosRESUMEN
This study explored the experienced impact of alopecia using patient's drawings. Forty patients made drawings of their feelings about appearance of their head and hair before and during chemotherapy. Patients also reported illness perceptions (B-IPQ). Twenty-four patients (60%) reported ⩾50% alopecia at enrollment. Most patients (70%) drew a negative change of feelings over time and physical changes. Many experiences related to alopecia emerged from the written texts underneath the drawings and the B-IPQ. Drawings depicted deteriorated feelings of appearance, affecting many activities throughout the day. Healthcare providers are advised to use patient-tailored questioning about alopecia.
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Alopecia , Antineoplásicos , Alopecia/inducido químicamente , Antineoplásicos/efectos adversos , Emociones , Femenino , HumanosRESUMEN
OBJECTIVE: Chemotherapy-induced alopecia (CIA) is one of the most common and distressing side effects of chemotherapy treatment. This study aims to assess the illness perceptions of female patients dealing with CIA, and their associations with demographic and clinical characteristics, coping strategies, and quality of life. The secondary aim was to compare the illness perceptions of patients with CIA with other samples, to help elucidate the specific perceptions of patients with CIA. METHOD: Forty female patients at risk of severe hair loss due to chemotherapy treatment were included at the oncological daycare unit of a teaching hospital in the Netherlands. Patients were asked to complete the Brief-Illness Perception Questionnaire (B-IPQ) and the Hair Quality of Life (Hair-QoL) questionnaire. RESULTS: Illness perceptions indicated that although patients understood their hair loss, they lacked being able to make sense of managing it, negatively impacting patients' lives. Psychological quality of life was significantly correlated with the B-IPQ domains: consequences, degree of concern, and emotional response. Social quality of life was significantly correlated with psychological quality of life. Patients with CIA felt significantly less able to manage their hair loss, compared to patients with breast cancer and psoriatic arthritis. CONCLUSION: As patients' beliefs of being able to manage their hair loss are important for adopting and maintaining adequate coping behaviors, additional effort of health care providers in fostering patients' sense of control is indicated, focusing on patients' strengths during and after chemotherapy treatment. In the context of developing interventions for patients with CIA, consequences, concern, and emotional response are the major dimensions that should be taken in account to help patients deal with hair loss.
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Antineoplásicos , Neoplasias de la Mama , Alopecia/inducido químicamente , Alopecia/tratamiento farmacológico , Antineoplásicos/efectos adversos , Neoplasias de la Mama/tratamiento farmacológico , Femenino , Cabello , Humanos , Calidad de Vida/psicologíaRESUMEN
Novels represent a corpus of data that offers innovative opportunities for research and theory in health psychology. This article discusses how adding 'health humanities' to health psychology opens up a potentially rich domain for research and clinical application. The concept of 'health humanities' is discussed and put into a context of related fields. The concepts of 'illness perceptions' and 'models of patient-health care provider interaction' are used as illustrations. Applications are given, focusing on patients and their caregivers, health care providers and society at large (bibliotherapy and expressive writing). Suggestions for further development of the area are included.
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Medicina de la Conducta , Humanidades , Humanos , EscrituraRESUMEN
BACKGROUND: Patients with inflammatory bowel disease (IBD) undergo surveillance colonoscopies at fixed intervals to reduce the risk of colorectal cancer (CRC). Taking patients' preferences for determining surveillance strategies into account could improve adherence and patient satisfaction. This study aimed to determine patient preferences for CRC surveillance in IBD. METHODS: We conducted a web-based, multicenter, discrete choice experiment among adult IBD patients with an indication for surveillance. Individuals were repeatedly asked to choose between 3 hypothetical surveillance scenarios. The choice tasks were based on bowel preparation (0.3-4 L), CRC risk reduction (8% to 1%-6%), and interval (1-10 years). Attribute importance scores, trade-offs, and willingness to participate were calculated using a multinomial logit model. Latent class analysis was used to identify subgroups with similar preferences. RESULTS: In total, 310 of 386 sent out questionnaires were completed and included in the study. Bowel preparation was prioritized (attribute importance score 40.5%) over surveillance interval and CRC risk reduction (31.1% and 28.4%, respectively). Maximal CRC risk reduction, low-volume bowel preparation (0.3 L laxative with 2 L clear liquid) with 2-year surveillance was the most preferred combination. Three subgroups were identified: a "surveillance avoidant," "CRC risk avoidant," and "surveillance preferring" groups. Membership was correlated with age, educational level, perceived CRC risk, the burden of bowel preparation, and colonoscopies. CONCLUSIONS: Inflammatory bowel disease patients consider bowel preparation as the most important element in acceptance of CRC surveillance. Heterogeneity in preferences was explained by 3 latent subgroups. These findings may help to develop an individualized endoscopic surveillance strategy in IBD patients.
This discrete choice experiment identified volume of bowel preparation as the attribute impacting patients' preferences regarding colitis-associated colorectal cancer surveillance most. Three subgroups were identified with similar preferences and distinct clinical characteristics.
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Neoplasias Asociadas a Colitis , Neoplasias Colorrectales , Enfermedades Inflamatorias del Intestino , Adulto , Colonoscopía , Neoplasias Colorrectales/diagnóstico , Neoplasias Colorrectales/epidemiología , Neoplasias Colorrectales/etiología , Humanos , Enfermedades Inflamatorias del Intestino/complicaciones , Enfermedades Inflamatorias del Intestino/epidemiología , Prioridad del Paciente , Factores de RiesgoRESUMEN
PURPOSE: Novels and autopathographies that employ cancer as a central theme offer a wealth of opportunities for researching the way patients with cancer make sense of their illness and its treatment. Such literatures can also inform clinical care, because they can support patients in living with their illness. The use of novels and autopathographies for research and care in persons with cancer fits within the framework of 'Health Humanities', the interdisciplinary field where medicine and social science meet. This paper presents a concise overview of novels and autopathographies that explore cancer as their theme. METHODS: Literature searches were conducted using PubMed, major scientific journals of medicine and clinical oncology, and databases in the Health Humanities. Searches focused on novels and autopathographies where cancer is the central theme, which are available in English, and which can be considered to represent 'high literature'. RESULTS: Twenty-nine books were identified. The majority of the books were written originally in English, and breast cancer and lung cancer were the most frequently discussed types of cancer. The core themes identified were giving meaning to illness; coping with medical treatment; and the psychological and social consequences of illness. CONCLUSION: Novels and autopathographies about cancer represent an innovative base for research on living with cancer and offer rich data on how people make sense of cancer and its medical treatment. Clinical implications of this review pertain to interventions based on bibliotherapy and expressive writing. Novels and autopathographies are just part of the Health Humanities context: a wide range of art genres may prove helpful in improving the quality of life of persons with cancer.
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Adaptación Psicológica , Autobiografías como Asunto , Obras de Ficción como Asunto , Literatura Moderna , Neoplasias de la Mama , Bases de Datos Factuales , Femenino , Humanos , Neoplasias Pulmonares/psicología , Calidad de Vida/psicología , EscrituraRESUMEN
PURPOSE: In the phase II DIRECT study a fasting mimicking diet (FMD) improved the clinical response to neoadjuvant chemotherapy as compared to a regular diet. Quality of Life (QoL) and illness perceptions regarding the possible side effects of chemotherapy and the FMD were secondary outcomes of the trial. METHODS: 131 patients with HER2-negative stage II/III breast cancer were recruited, of whom 129 were randomly assigned (1:1) to receive either a fasting mimicking diet (FMD) or their regular diet for 3 days prior to and the day of neoadjuvant chemotherapy. The European Organisation for Research and Treatment of Cancer (EORTC) questionnaires EORTC-QLQ-C30 and EORTC-QLQ-BR23; the Brief Illness Perception Questionnaire (BIPQ) and the Distress Thermometer were used to assess these outcomes at baseline, halfway chemotherapy, before the last cycle of chemotherapy and 6 months after surgery. RESULTS: Overall QoL and distress scores declined during treatment in both arms and returned to baseline values 6 months after surgery. However, patients' perceptions differed slightly over time. In particular, patients receiving the FMD were less concerned and had better understanding of the possible adverse effects of their treatment in comparison with patients on a regular diet. Per-protocol analyses yielded better emotional, physical, role, cognitive and social functioning scores as well as lower fatigue, nausea and insomnia symptom scores for patients adherent to the FMD in comparison with non-adherent patients and patients on their regular diet. CONCLUSIONS: FMD as an adjunct to neoadjuvant chemotherapy appears to improve certain QoL and illness perception domains in patients with HER2-negative breast cancer. Trialregister ClinicalTrials.gov Identifier: NCT02126449.
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Neoplasias de la Mama , Calidad de Vida , Neoplasias de la Mama/tratamiento farmacológico , Dieta , Ayuno , Femenino , Humanos , Terapia Neoadyuvante , Percepción , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Individuals with cancer experience the impact of chemotherapy on hair loss in different ways. The aim of this pilot study was to explore patients' experiences of alopecia through patients' drawings. METHODS: Fifteen female patients diagnosed with cancer and treated with chemotherapy were recruited at the oncological day-care unit of a teaching hospital in the Netherlands. Participants completed a semi-structured interview about alopecia. They drew their head and hair before and during chemotherapy and completed the Brief Illness Perception Questionnaire (B-IPQ). RESULTS: The drawings revealed predominantly physical effects, rather than emotions. Emotions were evident in the text that patients wrote under the drawings and in the B-IPQ open question about the perceived consequences of alopecia. The overall impact of alopecia that emerged from the drawings and the B-IPQ corresponded to the information retrieved from the interviews, namely disappointment, insecurity, sadness, and confrontation. CONCLUSIONS: Drawings expose cognitive and emotional responses to alopecia that may be relatively unexplored when using traditional assessment methods such as questionnaires or interviews. In future research, the drawing instructions need to be more specifically focused on feelings in order to better capture emotional reactions to hair loss.
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BACKGROUND: Improving teamwork in surgery is a complex goal and difficult to achieve. Human factors questionnaires, such as the Safety Attitudes Questionnaire (SAQ), can help us understand medical teamwork and may assist in achieving this goal. OBJECTIVE: This paper aimed to assess local team and safety culture in a cardiovascular surgery setting to understand how purposeful teamwork improvements can be reached. METHODS: Two cardiovascular surgical teams performing complex aortic treatments were assessed: an endovascular-treatment team (ETT) and an open-treatment team (OTT). Both teams answered an online version of the SAQ Dutch Edition (SAQ-NL) consisting of 30 questions related to six different domains of safety: teamwork climate, safety climate, job satisfaction, stress recognition, perceptions of management, and working conditions. In addition, one open-ended question was posed to gain more insight into the completed questionnaires. RESULTS: The SAQ-NL was completed by all 23 ETT members and all 13 OTT members. Team composition was comparable for both teams: 57% and 62% males, respectively, and 48% and 54% physicians, respectively. All participants worked for 10 years or more in health care. SAQ-NL mean scores were comparable between both teams, with important differences found between the physicians and nonphysicians of the ETT. Nonphysicians were less positive about the safety climate, job satisfaction, and working climate domains than were the physicians (P<.05). Additional education on performed procedures, more conjoined team training, as well as a hybrid operating room were suggested by participants as important areas of improvement. CONCLUSIONS: Nonphysicians of a local team performing complex endovascular aortic aneurysm surgery perceived safety climate, job satisfaction, and working conditions less positively than did physicians from the same team. Open-ended questions suggested that this is related to a lack of adequate conjoined training, lack of adequate education, and lack of an adequate operating room. With added open-ended questions, the SAQ-NL appears to be an assessment tool that allows for developing strategies that are instrumental in improving quality of care.
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PURPOSE: Examine illness perceptions, functional health and quality of life of lung cancer patients throughout chemotherapy treatment. PATIENTS AND METHODS: Longitudinal design with baseline measure 12 days after the first chemotherapy and follow-up measure 3 months later, where illness perceptions (BIPQ), functional health, and quality of life (EORTC QLQ-C-30) were measured. A total of 21 patients with non-small-cell lung cancer took part. Non-parametric testing was performed given the pilot nature of the study and the associated relatively small sample size. RESULTS: Small to medium changes in illness perceptions and functional health between the two measurement points were detected, with both becoming more positive. More negative illness perceptions at the beginning of the treatment were associated with less functioning and lower quality of life at both beginning and end of treatment. CONCLUSION: Addressing illness perceptions seems a clinically relevant approach in improving functioning and quality of life of patients with non-small-cell lung cancer.
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BACKGROUND: Understanding representations of disease in various art genres provides insights into how patients and health care providers view the diseases. It can also be used to enhance patient care and stimulate patient self-management. METHODS: This paper reviews how cardiovascular diseases are represented in novels, films, and paintings: myocardial infarction, aneurysm, hypertension, stroke, heart transplantation, Marfan's disease, congestive heart failure. Various search systems and definitions were used to help identify sources of representations of different cardiovascular diseases. The representations of the different diseases were considered separately. The Common Sense Model was used a theoretical model to outline illness perceptions and self-management in the various identified novels, films, and paintings. RESULTS: Myocardial infarction followed by stroke were the most frequently detailed diseases in all three art genres. This reflects their higher prevalence. Representations ranged from biomedical details through to social and psychological consequences of the diseases. CONCLUSIONS: Artistic representations of cardiovascular diseases reflect cognitions, emotions, and images of prevalent disease. These representations shape views and behaviour of ill and healthy persons regarding heart diseases. As these representations are amenable to change, they deserve further research, which may be instrumental in improving the quality of life of persons struck by cardiovascular diseases. Changing illness perceptions appears to be a method to improve self-management and thereby quality of life in patients with various cardiovascular diseases.
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Libros , Enfermedades Cardiovasculares , Películas Cinematográficas , Pinturas , HumanosRESUMEN
OBJECTIVES: This study explores illness perceptions, risk perceptions and degree of worry in patients with recently diagnosed systemic sclerosis (SSc). Specifically, it aims to answer whether and how early diagnosis in a stage that disease is relatively mild can impact patients' lives, and if and how disease severity associates with illness perceptions and risk perception. METHODS: Patients with a diagnosis of SSc <2 years were invited to participate in a focus group discussion for in-depth exploration of illness perceptions, risk perceptions and worry. In addition, illness perceptions, risk perceptions and worries were evaluated with the use of questionnaires. To explore how patients perceive SSc, we asked them to draw their disease. Physician global assessment of disease severity was used to measure disease severity. Associations between disease severity, illness/risk perceptions, drawings and elements of the focus group were assessed. RESULTS: We observed three dimensions of illness perception as most relevant for patients: personal control, concern and consequences. Patients with SSc experienced many symptoms and felt low personal control. Concerns about the future were often mentioned, and the majority of patients scored high on the worry questionnaire. None of the patients was preoccupied with prognosis or death. All drawings illustrate the impact of SSc on daily life and psychological well-being. Illness perceptions were highly variable between patients and did not associate with disease severity. CONCLUSION: This study showed that a diagnosis of early SSc had a significant impact on patients' lives, also in the absence of severe disease complications.
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Esclerodermia Sistémica , Grupos Focales , Humanos , Percepción , Índice de Severidad de la Enfermedad , Encuestas y CuestionariosRESUMEN
OBJECTIVE: Unmet health care needs require additional care resources to achieve optimal patient well-being. In this nationwide study we examined associations between a number of risk factors and unmet needs after treatment among women with breast cancer, while taking into account their health care practices. We expected that more care use would be associated with lower levels of unmet needs. METHODS: A multicenter, prospective, observational design was employed. Women with primary breast cancer completed questionnaires 6 and 15 months post-diagnosis. Medical data were retrieved from medical records. Direct and indirect associations between sociodemographic and clinical risk factors, distress, care use, and unmet needs were investigated with structural equation modeling. RESULTS: Seven hundred forty-six participants completed both questionnaires (response rate 73.7%). The care services received were not negatively associated with the reported levels of unmet needs after treatment. Comorbidity was associated with higher physical and daily living needs. Higher age was associated with higher health system-related and informational needs. Having had chemotherapy and a mastectomy were associated with higher sexuality needs and breast cancer-specific issues, respectively. A higher level of distress was associated with higher levels of unmet need in all domains. CONCLUSIONS: Clinicians may use these results to timely identify which women are at risk of developing specific unmet needs after treatment. Evidence-based, cost-effective (online) interventions that target distress, the most influential risk factor, should be further implemented and disseminated among patients and clinicians.
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Neoplasias de la Mama/psicología , Supervivientes de Cáncer/psicología , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Satisfacción del Paciente/estadística & datos numéricos , Adulto , Anciano , Neoplasias de la Mama/terapia , Femenino , Humanos , Mastectomía/estadística & datos numéricos , Persona de Mediana Edad , Evaluación de Necesidades/normas , Estudios Prospectivos , Factores de Riesgo , Apoyo Social , Encuestas y CuestionariosRESUMEN
Artistic representations of disease are widespread yet largely ignored in health psychology research. In this paper we use two infectious diseases, tuberculosis and the plague, as tracers to study how infectious diseases are represented in novels, films, paintings, and songs. They were represented especially in terms of their causes and seriousness. Studying how diseases are represented in various art forms extends our understanding of how they are socially constructed. This knowledge can also be incorporated into the training of health care providers to sensitize them to issues in patient care.