Sairauskäsitykset, elämänhallinta ja sopeutumisvalmennusta koskevat odotukset

Sopeutumisvalmennus on kuntoutusmuoto, jonka avulla pyritään tukemaan kuntoutujaa vamman tai pitkäaikaisen sairauden hallinnassa. Tutkimuksen tavoitteena oli selvittää sopeutumisvalmennukseen saapuvien aikuisten kuntoutujien elämäntilannetta, sairauskäsityksiä, hallinnan tunnetta, terveyteen liittyvää valtaistumista ja sopeutumisvalmennukseen kohdistuvia odotuksia. Kurssimuotoja oli kolme: syöpää, fibromyalgiaa ja diabetesta sairastavien kurssit. Neljän kuntoutuslaitoksen toteuttamille kursseille osallistui vuosina 2014–15 toteutetun tiedonkeruun aikana 581 kuntoutujaa, joista 377 (65 %) antoi kirjallisen suostumuksen osallistua tutkimukseen ja vastasi alkukyselylomakkeeseen. Kurssiryhmät erosivat sairauskäsitystensä suhteen toisistaan. Kuntoutujien elämäntilanne, sosiaalinen ja institutionaalinen luottamus sekä sairauden rajoitukset olivat yhteydessä hallinnan tunteeseen. Sopeutumisvalmennukseen kohdistuvat odotukset muodostivat neljä ulottuvuutta: palvelutietoja, sairautta ja sen hoitoa koskevia tietoja, psykososiaalista asiantuntijatukea sekä vertaistukea koskevat odotukset. Odotukset vaihtelivat kurssiryhmittäin. Sairauskäsityksiin liittyvät sairauden oireet, huolestuneisuus, tunnereaktiot ja käsitys hoidon vaikutuksista ja omista vaikutusmahdollisuuksista selittivät odotusten vaihtelua. Tietoihin ja psykososiaaliseen asiantuntija-apuun kohdistuvien odotusten todennäköisyyttä lisäsi terveyteen liittyvän valtaistumisen osalta tiedollisen hallinnan vähäisyys, kun taas vertaistukeen liittyvien odotusten todennäköisyyttä lisäsi vahva tiedollinen ja psykososiaalinen hallinta. Abstract Illness perceptions, empowerment and rehabilitation expectations of persons attending psychosocial rehabilitation Adaptation training is a form of psychosocial rehabilitation that aims to empower the client in coping with his or her illness or disability. The aim of the study was to examine the life situation, sense of mastery, illness perceptions, health-related empowerment and rehabilitation needs and expectations of clients attending adaptation training courses for adults with cancer, fibromyalgia or diabetes. In 2014–15, 581 clients attended these courses in four rehabilitation centers; 377 of them gave their informed consent to participate the study and answered the questionnaire at the beginning of the course. The three groups differed according to their illness perceptions and rehabilitation expectations, but there was also much variance between group members. Life situation, perceived disability, and social and institutional trust were associated with sense of mastery. Rehabilitation expectations were grouped into four main dimensions, i.e., information about services and support, information about the illness and treatment and rehabilitation options, psychosocial professional support, and peer support. Illness perceptions, i.e. perceived symptoms, worry, emotional reactions, experienced outcomes of treatment, and perceptions of one’s own possibilities to influence the illness were associated with different dimensions. Health-related empowerment was also connected with expectations. Expectations for information and professional help were stronger in those with weak informational mastery, whereas expectations for peer support were stronger with those whose informational and psychosocial mastery was better than average.

Illness perceptions and health outcomes among community-dwelling older adults with multiple chronic conditions

Illness perceptions (IP) has been associated with self-management and health outcomes in individuals with chronic diseases such as heart disease and diabetes; however, there is less research on the relationship between IP and health outcomes in individuals with multiple chronic conditions (MCC). Older adults with MCC are more likely to experience poor outcomes such as hospitalizations and poor self-rated health yet, there is less understanding of the processes associated with these outcomes. The purpose of this study was to (1) explore the relationship between IP and self-rated health among older adults with MCC (2) explore the relationship between IP and the number of hospitalization within the past year among older adults with MCC. Understanding these relationships may be instrumental to designing targeted interventions to improve health outcomes for this population. 116 participants (ages 65-90) completed the illness perception of multimorbidity scale, modified general health subscale of the SF-36 questionnaire, and self-reported number of hospitalizations within the past year. Ordinal logistic regression was used for analysis. Older adults who reported negative IP were likely to report worse self-rated health and this relationship remained significant after controlling for age and number of chronic conditions {-0.032 (95% CI (-0.050 to 0.014) p< 0.05}. There was no significant relationship between IP and the number of hospitalization within the past year. The study results study suggest that IP is associated with self-rated health in older adults with MCC. IP may be useful to design targeted interventions to improve self-rated health in this population.

Exploring patient experiences coping with using multiple medications: a qualitative interview study

ObjectiveLong-term adherence to evidence-based medications in cardiometabolic diseases remains poor, despite extensive efforts to develop and test interventions and deploy clinician performance incentives. The limited success of interventions may be due to ignored factors such as patients’ experience of medication-taking. Despite being potentially addressable by clinicians, these factors have not been sufficiently explored, which is particularly important as patients use increasing numbers of medications. The aim is to explore patient perspectives on medication-taking, medication properties that are barriers to adherence, and coping strategies for their medication regimen.DesignIndividual, in-person, semistructured qualitative interviews.SettingUrban healthcare system.ParticipantsTwenty-six adults taking ≥2 oral medications for diabetes, hypertension or hyperlipidaemia with non-adherence. Interviews were digitally recorded and transcribed. Data were analysed using developed codes to generate themes. Representative quotations were selected to illustrate themes.ResultsParticipants’ mean age was 55 years, 46% were female and 39% were non-white. Six key themes were identified: (1) medication-taking viewed as a highly inconvenient action (that patients struggle to remember to do); (2) negative implications because of inconvenience or illness perceptions; (3) actual medication regimens can deviate substantially from prescribed regimens; (4) certain medication properties (especially size and similar appearance with others) may contribute to adherence deviations; (5) development of numerous coping strategies to overcome barriers and (6) suggestions to make medication-taking easier (including reducing drug costs, simplifying regimen or dosing frequency and creating more palatable medications).ConclusionPatients with poor adherence often find taking prescription medications to be undesirable and take them differently than prescribed in part due to properties of the medications themselves and coping strategies they have developed to overcome medication-taking challenges. Interventions that reduce the inconvenience of medication use and tailor medications to individual needs may be a welcome development.

How I see is how I feel. Identification of illness perception schema and its association with adaptation outcomes in multiple sclerosis – a 5-year prospective study

The aim of the study was to assess the role of illness perception in adaptation to chronic disease among patients with relapsing-remitting multiple sclerosis (RRMS). The differences between the obtained configurations of the illness perception components during four measurements and the model of predictions of the values of adaptation indicators, i.e. depression, anxiety and quality of life during subsequent measurements, were analyzed. Illness representation was assessed at baseline via the Illness Representation Questionnaire–Revised. The adaptation indicators–anxiety, depression (measured by HADS) and quality of life (measured by MSIS-29) were measured at baseline and three more times over a five-year period. The k-means cluster analysis (with two-way and repeated measures ANOVA) was conducted in a group of 90 patients (48.89% women and 51.11% men). Subsequently, the mean values of depression, anxiety, physical and psychological quality of life were compared between the clusters using the Kruskall-Wallis test. Finally, a cross-lagged panel modeled for HADS and MSIS-29 subscales in each measurement occasion (T1-T4). Three different illness perception clusters (Anxious, Realistic and Fatalistic Illness Perception named AIP, RIP and FIP) were composed which differentiated the depression, anxiety, quality of life level and age. FIP showed the lowest adaptation outcomes with small differences between AIP and RIP. It was also significantly characterized by the highest age. The positive adaptation indicators were related to the RIP cluster. The model presented rather satisfactory fit (χ2(48) = 81.05; CFI = .968; TLI = .925; SRMR = .050) with slightly inflated RMSEA = .087 (90%CI .053-.120). Based on initial measurements of individual characteristics, it was possible to predict the functioning of patients after several years. For patients with AIP, the covariance of anxiety and depression was significant, for patients with RIP–depression and anxiety, and for patients with FIP–depression. In addition, each of the variables was a predictor of subsequent measurements in particular time intervals, illustrating the dynamics of changes. Results highlight that illness perceptions formed at the beginning of RRMS are important for the process of adaptation to the disease. Moreover, they showed the differences between the adaptation outcomes supporting the idea that a cognitive representation might be important for the level of psychological functioning.

Atrial fibrillation, quality of life and distress: a cluster analysis of cognitive and behavioural responses

Purpose Few studies have examined specific cognitive and behavioural responses to symptoms, which may impact health-related outcomes, in conjunction with illness representations, as outlined by the Common-Sense-Model. Patients with atrial fibrillation (AF) report poor quality-of-life (QoL) and high distress. This cross-sectional study investigated patterns/clusters of cognitive and behavioural responses to illness, and illness perceptions, and relationships with QoL, depression and anxiety. Methods AF patients (N = 198) recruited at cardiology clinics completed the AF-Revised Illness Perception Questionnaire, Atrial-Fibrillation-Effect-on-Quality-of-Life Questionnaire, Patient Health Questionnaire-8 and Generalized Anxiety Disorder Questionnaire. Cluster analysis used Ward’s and K-means methods. Hierarchical regressions examined relationships between clusters with QoL, depression and anxiety. Results Two clusters of cognitive and behavioural responses to symptoms were outlined; (1) ‘high avoidance’; (2) ‘low symptom-focussing’. Patients in Cluster 1 had lower QoL (M = 40.36, SD = 18.40), greater symptoms of depression (M = 7.20, SD = 5.71) and greater symptoms of anxiety (M = 5.70, SD = 5.90) compared to patients in Cluster 2 who had higher QoL (M = 59.03, SD = 20.12), fewer symptoms of depression (M = 3.53, SD = 3.56) and fewer symptoms of anxiety (M = 2.56, SD = 3.56). Two illness representation clusters were outlined; (1) ‘high coherence and treatment control’, (2) ‘negative illness and emotional representations’. Patients in Cluster 2 had significantly lower QoL (M = 46.57, SD = 19.94), greater symptoms of depression (M = 6.12, SD = 5.31) and greater symptoms of anxiety (M = 4.70, SD = 5.27), compared with patients in Cluster 1 who had higher QoL (M = 61.52, SD = 21.38), fewer symptoms of depression (M = 2.85, SD = 2.97) and fewer symptoms of anxiety (M = 2.16, SD = 3.63). Overall, clusters of cognitive and behavioural responses to symptoms, and illness perceptions significantly explained between 14 and 29% of the variance in QoL, depression and anxiety. Conclusion Patterns of cognitive and behavioural responses to symptoms, and illness perceptions are important correlates of health-related outcomes in AF patients.

Illness perceptions, financial toxicity, symptom burden, and survival in cancer clinical trial (CCT) participants.

160 Background: Patients’ perceptions of their illness are important for treatment decision-making and quality of life. Limited data exist describing associations of illness perceptions with other patient-centered outcomes, particularly in CCT participants. We sought to examine associations among illness perceptions and CCT patients’ financial toxicity, physical and psychological symptoms, and survival. Methods: From 7/2015-7/2017, we prospectively enrolled CCT participants who expressed interest in financial assistance programs (n = 157) and a group of patients matched by age, sex, cancer type, specific trial, and trial phase (n = 103). We assessed baseline illness perceptions (Brief Illness Perceptions Questionnaire [BIPQ] with scores > 50 indicating negative perceptions), financial toxicity (degree costs of cancer care have been a burden, moderate to catastrophic indicating financial toxicity), physical (Edmonton Symptom Assessment Scale [ESAS]) and psychological (Patient Health Questionnaire-4 [PHQ-4]) symptoms. We used descriptive statistics to examine associations of BIPQ and sociodemographic/clinical factors, financial toxicity, ESAS, PHQ-4, and overall survival. We used the Kaplan-Meier method to estimate median survival times and Cox regression to assess the association of BIPQ and overall survival. Results: Among 260 patients, 189 (72.7%) completed BIPQ surveys (median age 69 [Range 26 to 83] years, 66.1% female). 68.8% had negative illness perceptions. We found no significant associations among negative illness perceptions and patients’ age, sex, race, education, marital status, performance status, insurance, cancer type, metastatic disease status, self-reported income, trial phase, trial year, or Charlson Comorbidity Index score. Patients with negative illness perceptions were more likely to report financial toxicity (69.8% vs 48.8%, p = 0.006), and had higher ESAS-total (Medians: 44 [Range 0-89] vs 21 [Range 0-78], p < 0.001), PHQ-4 depression (Medians: 2 [Range 0-6] vs 0 [Range 0-6], p < 0.001), and PHQ-4 anxiety (Medians: 3 [Range 0-6] vs 1 [Range 0-6], p < 0.001) scores. Patients with negative illness perceptions had shorter overall survival (Medians: 22 [Range 10-29] vs 42 [Range 28-Not Reached] months, log-rank p = 0.004). Adjusting for receipt of financial assistance, patients with negative illness perceptions experienced higher risk of death (HR 1.65, 95% CI 1.10-2.48). Conclusions: In this prospective study of CCT participants, we found that patients with negative illness perceptions experienced greater financial toxicity, more symptom burden, and worse survival than those with more positive perceptions, despite comparable sociodemographic/clinical factors. These findings highlight the need to assess and address patients’ illness perceptions and financial burden when seeking to enhance patient-centered outcomes in oncology.

Financial toxicity, symptom burden, illness perceptions, and communication confidence in cancer clinical trial participants.

86 Background: Cancer clinical trial (CCT) participants are at risk for experiencing adverse effects from financial toxicity, yet these remain understudied. We sought to describe associations among CCT participant-reported financial toxicity (financial burden [FB] and trial cost concerns), symptoms, illness perceptions, communication confidence, hospitalizations, and survival. Methods: From 7/2015-7/2017, we prospectively enrolled CCT participants who expressed interest in financial assistance (n = 100) and a patient group matched by age, sex, cancer type, specific trial, and trial phase (n = 98). We assessed FB (burdened by costs of cancer care), trial cost concerns (worried about affording medical costs of a CCT), physical (Edmonton Symptom Assessment Scale [ESAS]) and psychological (Patient Health Questionnaire-4 [PHQ-4]) symptoms, illness perceptions (Brief Illness Perception Questionnaire [BIPQ]), and communication confidence (Perceived Efficacy in Patient-Physician Interactions [PEPPI]). We used regression models to explore sociodemographic associations with FB and trial cost concerns, as well as their associations with symptom burden, illness perceptions, and communication confidence, adjusting for age, sex, race, performance status, marital status, and metastatic status. We also used Kaplan-Meier and regression methods to evaluate their associations with 6-month hospitalizations and survival. Results: Of 198 patients enrolled, 112 (56.6%) reported FB and 82 (41.4%) had trial cost concerns. Patients with FB were younger (OR 0.96, 95% CI 0.94-0.98) with lower incomes (< $100,000, OR 4.61, 95% CI 2.35-9.01). Patients with trial cost concerns had lower incomes (< $100,000, OR 2.78, 95% CI 1.45-5.29). On adjusted analyses, patients with FB had higher ESAS (OR 1.03, 95% CI 1.02-1.05), PHQ-4 depression (OR 1.54, 95% CI 1.22-1.94), and PHQ-4 anxiety (OR 1.30, 95% CI 1.08-1.55) scores, as well as more negative illness perceptions (OR 1.04, 95% CI 1.01-1.07), but no significant difference in communication confidence (OR 0.98, 95% CI 0.93-1.05). Patients reporting trial cost concerns had higher ESAS (OR 1.03, 95% CI 1.01-1.05), PHQ-4 depression (OR 1.35, 95% CI 1.10-1.65), and PHQ-4 anxiety (OR 1.27, 95% CI 1.07-1.51) scores, as well as more negative illness perceptions (OR 1.06, 95% CI 1.03-1.10), and lower communication confidence (OR 0.93, 95% CI 0.87-0.99). Financial toxicity was not significantly associated with hospitalizations or survival. Conclusions: In this study of CCT participants, younger patients with lower incomes were most vulnerable to financial toxicity. Financial toxicity was associated with greater symptoms, more negative illness perceptions, and lower communication confidence, underscoring the importance of addressing these issues when seeking to alleviate the adverse effects of financial toxicity in CCT participants.

Vision-related Quality of Life in Patients With Glaucoma: the Role of Illness Perceptions

Purpose: To explore the predictive effect of illness perceptions on vision-related quality of life (VRQoL) in Chinese glaucoma patients.Methods: In this cross-sectional study, 97 patients with glaucoma completed the Brief Illness Perception Questionnaire (BIPQ), the Glaucoma Quality of Life-15 (GQL-15), and a questionnaire with sociodemographic and clinical information. Correlation analysis and hierarchical linear regression analysis were performed.Results: The BIPQ total score was positively correlated with the scores of the total GQL-15 and its four dimensions. Chronic comorbidities, type of glaucoma, best-corrected visual acuity (BCVA), mean defect (MD) of visual field in the better eye, and identity in the BIPQ were the critical predictors of VRQoL. Illness perceptions independently accounted for 7.8% of the variance in the VRQoL of glaucoma patients.Conclusions: Patients with stronger illness perceptions who perceive themselves as having more glaucoma symptoms are likely to experience worse VRQoL. Illness perceptions in glaucoma patients deserve clinical attention, and further studies are needed to examine whether cognitive interventions targeting illness perceptions can improve VRQoL.