Pub Date : 2023-09-01Epub Date: 2022-05-16DOI: 10.1177/17423953221101606
Leonard A Jason, Caroline L Gaglio, Jacob Furst, Mohammed Islam, Matthew Sorenson, Karl E Conroy, Ben Z Katz
Objectives: Studies have demonstrated immune dysfunction in adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS); however, evidence is varied. The current study used network analysis to examine relationships between cytokines among a sample of pediatric participants with ME/CFS.
Methods: 10,119 youth aged 5-17 in the Chicagoland area were screened for ME/CFS; 111 subjects and controls were brought in for a physician examination and completed a blood draw. Youth were classified as controls (Cs, N = 43), ME/CFS (N = 23) or severe (S-ME/CFS, N = 45). Patterns of plasma cytokine networks were analyzed.
Results: All participant groups displayed a primary network of interconnected cytokines. In the ME/CFS group, inflammatory cytokines IL-12p70, IL-17A, and IFN-γ were connected and included in the primary membership, suggesting activation of inflammatory mechanisms. The S-ME/CFS group demonstrated a strong relationship between IL-17A and IL-23, a connection associated with chronic inflammation. The relationships of IL-6 and IL-8 in ME/CFS and S-ME/CFS participants also differed from Cs. Together, these results indicate pro-inflammatory responses in our illness populations.
Discussion: Our data imply biological differences between our three participant groups, with ME/CFS and S-ME/CFS participants demonstrating an inflammatory profile. Examining co-expression of cytokines may aid in the identification of a biomarker for pediatric ME/CFS.
{"title":"Cytokine network analysis in a community-based pediatric sample of patients with myalgic encephalomyelitis/chronic fatigue syndrome.","authors":"Leonard A Jason, Caroline L Gaglio, Jacob Furst, Mohammed Islam, Matthew Sorenson, Karl E Conroy, Ben Z Katz","doi":"10.1177/17423953221101606","DOIUrl":"10.1177/17423953221101606","url":null,"abstract":"<p><strong>Objectives: </strong>Studies have demonstrated immune dysfunction in adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS); however, evidence is varied. The current study used network analysis to examine relationships between cytokines among a sample of pediatric participants with ME/CFS.</p><p><strong>Methods: </strong>10,119 youth aged 5-17 in the Chicagoland area were screened for ME/CFS; 111 subjects and controls were brought in for a physician examination and completed a blood draw. Youth were classified as controls (Cs, N = 43), ME/CFS (N = 23) or severe (S-ME/CFS, N = 45). Patterns of plasma cytokine networks were analyzed.</p><p><strong>Results: </strong>All participant groups displayed a primary network of interconnected cytokines. In the ME/CFS group, inflammatory cytokines IL-12p70, IL-17A, and IFN-γ were connected and included in the primary membership, suggesting activation of inflammatory mechanisms. The S-ME/CFS group demonstrated a strong relationship between IL-17A and IL-23, a connection associated with chronic inflammation. The relationships of IL-6 and IL-8 in ME/CFS and S-ME/CFS participants also differed from Cs. Together, these results indicate pro-inflammatory responses in our illness populations.</p><p><strong>Discussion: </strong>Our data imply biological differences between our three participant groups, with ME/CFS and S-ME/CFS participants demonstrating an inflammatory profile. Examining co-expression of cytokines may aid in the identification of a biomarker for pediatric ME/CFS.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 3","pages":"571-580"},"PeriodicalIF":1.8,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9666669/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41143742","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-09-01Epub Date: 2022-05-03DOI: 10.1177/17423953221099042
Rebecca Keyte, Sophia Kauser, Michail Mantzios, Helen Egan
Objectives: Cystic Fibrosis (CF) care is entering a period of personalised medicine with the emergence of CF transmembrane conductance regulator (CFTR) modulator therapies. Anecdotally individuals are reporting life-changing effects of modulator therapies, proposing an important area of study.
Methods: Twenty adult participants (males: 8, age range: 22-51 years, average FEV1: 53.45%) were recruited via social media to participate in a semi-structured interview; 17 participants were currently taking Elexacaftor/Tezacaftor/Ivacaftor (Kaftrio).
Results: An appreciation of a "normal life" post-modulator therapy is paramount, with improvements in symptoms and quality-of-life bringing a more urgent imperative for the provision of effective support to encourage positive health and lifestyle choices.
Discussion: In this new era of CF care, there remains many challenges present for the CF community, with participants suggesting that proactive psychological support is required along with proactive awareness regarding health risk behaviours for the current and future CF generations.
{"title":"The psychological implications and health risks of cystic fibrosis pre- and post- CFTR modulator therapy.","authors":"Rebecca Keyte, Sophia Kauser, Michail Mantzios, Helen Egan","doi":"10.1177/17423953221099042","DOIUrl":"https://doi.org/10.1177/17423953221099042","url":null,"abstract":"<p><strong>Objectives: </strong>Cystic Fibrosis (CF) care is entering a period of personalised medicine with the emergence of CF transmembrane conductance regulator (CFTR) modulator therapies. Anecdotally individuals are reporting life-changing effects of modulator therapies, proposing an important area of study.</p><p><strong>Methods: </strong>Twenty adult participants (males: 8, age range: 22-51 years, average FEV<sub>1</sub>: 53.45%) were recruited via social media to participate in a semi-structured interview; 17 participants were currently taking Elexacaftor/Tezacaftor/Ivacaftor (Kaftrio).</p><p><strong>Results: </strong>An appreciation of a \"normal life\" post-modulator therapy is paramount, with improvements in symptoms and quality-of-life bringing a more urgent imperative for the provision of effective support to encourage positive health and lifestyle choices.</p><p><strong>Discussion: </strong>In this new era of CF care, there remains many challenges present for the CF community, with participants suggesting that proactive psychological support is required along with proactive awareness regarding health risk behaviours for the current and future CF generations.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 3","pages":"539-556"},"PeriodicalIF":1.3,"publicationDate":"2023-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41162037","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-08-22DOI: 10.1177/17423953231196613
Chanhyun Park, Sola Han, Kathryn P Litten, Sanica Mehta, Boon Peng Ng
Background: Hypertension is the most common comorbidity in patients with cancer. We aimed to estimate the prevalence of hypertension by demographic characteristics and cancer type among hospitalized patients with cancer.
Methods: Hospitalized cancer patients were included using 2016-2018 National Inpatient Sample data. The independent variable was the presence of hypertension, which was further classified as primary, secondary, and other hypertension. Patient characteristics were grouped by age, sex, race/ethnicity, and the 12 most common cancer types. Multinomial logistic regression was used.
Results: Among 638,670 hospitalized patients with cancer, 56.8% had hypertension. The predicted percentages of having any hypertension were higher with age, male gender, and black race. The predicted percentages of any hypertension were the highest in kidney cancer patients across all age and race/ethnicity groups. Uterine cancer was associated with the highest percentages of primary hypertension, followed by kidney cancer. Leukemia was associated with the highest percentages of secondary hypertension, followed by non-Hodgkin lymphoma.
Discussion: Kidney cancer patients had the highest predicted percentage of hypertension overall, while uterine cancer and leukemia had the highest percentages of primary and secondary hypertension, respectively. This study provides evidence for identifying cancer patients who need more attention for the prevention and management of hypertension.
{"title":"Prevalence of primary and secondary hypertension among hospitalized patients with cancer in the United States.","authors":"Chanhyun Park, Sola Han, Kathryn P Litten, Sanica Mehta, Boon Peng Ng","doi":"10.1177/17423953231196613","DOIUrl":"https://doi.org/10.1177/17423953231196613","url":null,"abstract":"<p><strong>Background: </strong>Hypertension is the most common comorbidity in patients with cancer. We aimed to estimate the prevalence of hypertension by demographic characteristics and cancer type among hospitalized patients with cancer.</p><p><strong>Methods: </strong>Hospitalized cancer patients were included using 2016-2018 National Inpatient Sample data. The independent variable was the presence of hypertension, which was further classified as primary, secondary, and other hypertension. Patient characteristics were grouped by age, sex, race/ethnicity, and the 12 most common cancer types. Multinomial logistic regression was used.</p><p><strong>Results: </strong>Among 638,670 hospitalized patients with cancer, 56.8% had hypertension. The predicted percentages of having any hypertension were higher with age, male gender, and black race. The predicted percentages of any hypertension were the highest in kidney cancer patients across all age and race/ethnicity groups. Uterine cancer was associated with the highest percentages of primary hypertension, followed by kidney cancer. Leukemia was associated with the highest percentages of secondary hypertension, followed by non-Hodgkin lymphoma.</p><p><strong>Discussion: </strong>Kidney cancer patients had the highest predicted percentage of hypertension overall, while uterine cancer and leukemia had the highest percentages of primary and secondary hypertension, respectively. This study provides evidence for identifying cancer patients who need more attention for the prevention and management of hypertension.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":" ","pages":"17423953231196613"},"PeriodicalIF":1.3,"publicationDate":"2023-08-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10041384","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-06-01DOI: 10.1177/17423953221088629
Sandrine Roussel, Mariane Frenay
Objectives: This study aimed to explore the practice-representation links among Health Care Professionals (HCP)s practising Therapeutic Patient Education (TPE). Understanding these links might actually help to address the challenges of TPE implementation, particularly the patient-centred dimension.
Methods: A qualitative study using individual interviews was conducted with HCPs practising in French-speaking Belgium or in France. Data analysis was carried out in two steps: to draw up a typology of educational practices (including variations) and, in line with the Social Representation Theory, to identify possible related social representations.
Results: The typology, based on HCP-Patient power distribution, was built from 26 interviews. Four types and nine subtypes were identified. Besides the power distribution, practice (sub)types were also specific regarding communication modes, consideration for patients' representations, motivational approach, personalization, complexity of methods and learning contents, and practice reflexivity. Practices were seldom constant. Three variations were highlighted: within a subtype, between different subtypes, and between education and technical care. Both practice subtypes and variations were related to specific decisive representations.
Discussion: Representations related to practices and those related to practices variations offer new perspectives for TPE implementation. There is no panacea for achieving more patient-centred approaches; tailored strategies based on practice subtypes are needed.
{"title":"Towards a patient-centred approach in therapeutic patient education. A qualitative study exploring health care professionals' practices and related representations.","authors":"Sandrine Roussel, Mariane Frenay","doi":"10.1177/17423953221088629","DOIUrl":"https://doi.org/10.1177/17423953221088629","url":null,"abstract":"<p><strong>Objectives: </strong>This study aimed to explore the practice-representation links among Health Care Professionals (HCP)s practising Therapeutic Patient Education (TPE). Understanding these links might actually help to address the challenges of TPE implementation, particularly the patient-centred dimension.</p><p><strong>Methods: </strong>A qualitative study using individual interviews was conducted with HCPs practising in French-speaking Belgium or in France. Data analysis was carried out in two steps: to draw up a typology of educational practices (including variations) and, in line with the Social Representation Theory, to identify possible related social representations.</p><p><strong>Results: </strong>The typology, based on HCP-Patient power distribution, was built from 26 interviews. Four types and nine subtypes were identified. Besides the power distribution, practice (sub)types were also specific regarding communication modes, consideration for patients' representations, motivational approach, personalization, complexity of methods and learning contents, and practice reflexivity. Practices were seldom constant. Three variations were highlighted: within a subtype, between different subtypes, and between education and technical care. Both practice subtypes and variations were related to specific decisive representations.</p><p><strong>Discussion: </strong>Representations related to practices and those related to practices variations offer new perspectives for TPE implementation. There is no panacea for achieving more patient-centred approaches; tailored strategies based on practice subtypes are needed.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 2","pages":"418-433"},"PeriodicalIF":1.3,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/59/86/10.1177_17423953221088629.PMC9999270.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9766240","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-06-01Epub Date: 2022-04-25DOI: 10.1177/17423953221097076
Priya Treesa Thomas, Manjusha G Warrier, S Arun, B Bhuvaneshwari, Seena Vengalil, Saraswati Nashi, Veeramani Preethish-Kumar, Kiran Polavarapu, Prakashi Rajaram, Atchayaram Nalini
Objective: To develop individualised psychosocial intervention program for people with MND and their families in India.
Methods: People with MND and healthcare staff were constructively involved in co-designing the intervention program in four phases adapted from the MRC framework: 1. A detailed need assessment phase where 30 participants shared their perceptions of psychosocial needs 2. Developing the intervention module (synthesis of narrative review, identified needs); 3. Feasibility testing of the intervention program among seven participants; 4. Feedback from participants on the feasibility (acceptance, practicality adaptation). The study adopted an exploratory research design.
Results: Intervention program of nine sessions, addressing psychosocial challenges through the different stages of progression of the illness and ways to handle the challenges, specific to the low resource settings, was developed and was found to be feasible. People with MND and families who participated in the feasibility study shared the perceived benefit through feedback interviews.
Conclusion: MND has changing needs and challenges. Intervention programme was found to be feasible to be implemented among larger group to establish efficacy.
{"title":"An individualised psychosocial intervention program for persons with MND/ALS and their families in low resource settings.","authors":"Priya Treesa Thomas, Manjusha G Warrier, S Arun, B Bhuvaneshwari, Seena Vengalil, Saraswati Nashi, Veeramani Preethish-Kumar, Kiran Polavarapu, Prakashi Rajaram, Atchayaram Nalini","doi":"10.1177/17423953221097076","DOIUrl":"10.1177/17423953221097076","url":null,"abstract":"<p><strong>Objective: </strong>To develop individualised psychosocial intervention program for people with MND and their families in India.</p><p><strong>Methods: </strong>People with MND and healthcare staff were constructively involved in co-designing the intervention program in four phases adapted from the MRC framework: 1. A detailed need assessment phase where 30 participants shared their perceptions of psychosocial needs 2. Developing the intervention module (synthesis of narrative review, identified needs); 3. Feasibility testing of the intervention program among seven participants; 4. Feedback from participants on the feasibility (acceptance, practicality adaptation). The study adopted an exploratory research design.</p><p><strong>Results: </strong>Intervention program of nine sessions, addressing psychosocial challenges through the different stages of progression of the illness and ways to handle the challenges, specific to the low resource settings, was developed and was found to be feasible. People with MND and families who participated in the feasibility study shared the perceived benefit through feedback interviews.</p><p><strong>Conclusion: </strong>MND has changing needs and challenges. Intervention programme was found to be feasible to be implemented among larger group to establish efficacy.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 2","pages":"458-471"},"PeriodicalIF":1.3,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9469408","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-06-01DOI: 10.1177/17423953221089315
Sharon A Brown, Heather A Becker, Alexandra A García, Mary M Velasquez, Hirofumi Tanaka, Mary A Winter, William B Perkison, Eric L Brown, David Aguilar, Craig L Hanis
Objectives: Examine acculturation and psychological, lifestyle, and physiological factors based on gender and country of origin (U.S. vs. Mexico).
Methods: Baseline data from the Starr County diabetes prevention study (N = 300) were analyzed - acculturation (language), psychological factors (depression), lifestyle factors (sedentary behaviors), and diabetes-related physiological outcomes (insulin resistance). MANOVA and linear regression were used to examine variable relationships based on gender and country of origin and identify predictors of depression and insulin resistance.
Results: Participants were: predominantly female (73%); 51 years of age, on average; born in Mexico (71%); and Spanish-speaking. Individuals spent 11 of their waking hours (range = 0-18 h) in sedentary activities. Compared to females, more males spoke English and reported fewer hours in sedentary activities. Compared to participants born in Mexico, those born in the U.S. were more likely to: speak English; report depressive symptoms; and exhibit elevated BMI and insulin resistance rates. Two distinct models significantly predicted depression (R2 = 14.5%) and insulin resistance (R2 = 26.8%), with acculturation-language entering into both models.
Discussion: Significant gender and country-of-origin differences were found. Future research on diabetes prevention should examine other Hispanic subgroups and strategies for addressing individual differences, while employing cost-effective group interventions that incorporate these differences and reach more at-risk individuals.
{"title":"The effects of gender and country of origin on acculturation, psychological factors, lifestyle factors, and diabetes-related physiological outcomes among Mexican Americans: The Starr County diabetes prevention initiative.","authors":"Sharon A Brown, Heather A Becker, Alexandra A García, Mary M Velasquez, Hirofumi Tanaka, Mary A Winter, William B Perkison, Eric L Brown, David Aguilar, Craig L Hanis","doi":"10.1177/17423953221089315","DOIUrl":"https://doi.org/10.1177/17423953221089315","url":null,"abstract":"<p><strong>Objectives: </strong>Examine acculturation and psychological, lifestyle, and physiological factors based on gender and country of origin (U.S. vs. Mexico).</p><p><strong>Methods: </strong>Baseline data from the Starr County diabetes prevention study (<i>N</i> = 300) were analyzed - acculturation (<i>language</i>), psychological factors (<i>depression</i>), lifestyle factors (<i>sedentary behaviors</i>), and diabetes-related physiological outcomes (<i>insulin resistance</i>). MANOVA and linear regression were used to examine variable relationships based on gender and country of origin and identify predictors of depression and insulin resistance.</p><p><strong>Results: </strong>Participants were: predominantly female (73%); 51 years of age, on average; born in Mexico (71%); and Spanish-speaking. Individuals spent 11 of their waking hours (range = 0-18 h) in sedentary activities. Compared to females, more males spoke English and reported fewer hours in sedentary activities. Compared to participants born in Mexico, those born in the U.S. were more likely to: speak English; report depressive symptoms; and exhibit elevated BMI and insulin resistance rates. Two distinct models significantly predicted <i>depression</i> (R<sup>2</sup> = 14.5%) and <i>insulin resistance</i> (R<sup>2</sup> = 26.8%), with acculturation-language entering into both models.</p><p><strong>Discussion: </strong>Significant gender and country-of-origin differences were found. Future research on diabetes prevention should examine other Hispanic subgroups and strategies for addressing individual differences, while employing cost-effective group interventions that incorporate these differences and reach more at-risk individuals.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 2","pages":"444-457"},"PeriodicalIF":1.3,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9508285/pdf/nihms-1794227.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9747357","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-06-01DOI: 10.1177/17423953221087647
Shahadat Uddin, Shangzhou Wang, Arif Khan, Haohui Lu
Objective: The presence of one chronic disease often leads to the development of one or more other chronic diseases. This study examines whether there are significant progressions between chronic diseases and identifies the risk factors that influence them.
Methods: This study used an administrative healthcare dataset sample from 29,280 hospitalized patients over 24 years (1995 to 2018, inclusive) to explore the progression of common chronic diseases and their major comorbidities. An Australian health insurance organization provided the dataset. We used the t-test to examine the statistical significance of progression between chronic diseases. A network analysis approach is followed to rank different chronic diseases contributing to disease progressions.
Results: We found that few chronic diseases (e.g. cardiovascular diseases and diabetes) have a high prevalence in progressing to other chronic diseases, which is statistically significant at p ≤ 0.05. These progression frequencies significantly increase with time and age. We also found that patients' sex differently affects the disease progressions.
Discussion: This study found that some chronic diseases have a high prevalence in comorbidity progressions. In addition, the progression statistics differ with time and age. The results of this study can help researchers, stakeholders, and policymakers gain insights into the disease transitions and act as a guiding tool to assess future disease burden and plan accordingly.
{"title":"Comorbidity progression patterns of major chronic diseases: The impact of age, gender and time-window.","authors":"Shahadat Uddin, Shangzhou Wang, Arif Khan, Haohui Lu","doi":"10.1177/17423953221087647","DOIUrl":"https://doi.org/10.1177/17423953221087647","url":null,"abstract":"<p><strong>Objective: </strong>The presence of one chronic disease often leads to the development of one or more other chronic diseases. This study examines whether there are significant progressions between chronic diseases and identifies the risk factors that influence them.</p><p><strong>Methods: </strong>This study used an administrative healthcare dataset sample from 29,280 hospitalized patients over 24 years (1995 to 2018, inclusive) to explore the progression of common chronic diseases and their major comorbidities. An Australian health insurance organization provided the dataset. We used the <i>t-test</i> to examine the statistical significance of progression between chronic diseases. A network analysis approach is followed to rank different chronic diseases contributing to disease progressions.</p><p><strong>Results: </strong>We found that few chronic diseases (e.g. cardiovascular diseases and diabetes) have a high prevalence in progressing to other chronic diseases, which is statistically significant at <i>p</i> ≤ 0.05. These progression frequencies significantly increase with time and age. We also found that patients' sex differently affects the disease progressions.</p><p><strong>Discussion: </strong>This study found that some chronic diseases have a high prevalence in comorbidity progressions. In addition, the progression statistics differ with time and age. The results of this study can help researchers, stakeholders, and policymakers gain insights into the disease transitions and act as a guiding tool to assess future disease burden and plan accordingly.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 2","pages":"304-313"},"PeriodicalIF":1.3,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9782508","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-06-01DOI: 10.1177/17423953211073367
Michael Gudgeon, Amanda Wilkinson, Leigh Hale
Objectives: Individuals self-manage chronic illnesses daily with episodic support provided by healthcare professionals. Learning about supporting self-management should be part of healthcare professional student programme curricular and training. However, little is known about the perceptions and attitudes students hold about supporting patient self-management and whether support for self-management is implemented on clinical placement.
Methods: A mixed method approach explored students' perceptions and attitudes to supporting patient self-management via e-survey and semi-structured interviews.
Results: Survey data (n = 96; 11 programmes) were analysed descriptively and interviews thematically (n = 10; F = 9; aged 19-34 years; 8 programmes). Survey data suggested participants had a positive attitude towards, and were confident in providing support for self-management, but did not implement it frequently in clinical environments. One main theme "Self-management support is puzzling" identified the uncertainty around what students thought their role was or how to enact support within the patient interaction. A smaller theme "Self-management support is valuable" showed participants were open to learning more about how to support patient self-management.
Discussion: We suggest more explicit and frequent learning opportunities need to be provided for healthcare professional students to learn how to support patient self-management, with particular emphasis on involving family and incorporating self-management tools within the patient encounter.
{"title":"Healthcare professional students' perceptions of supporting patient self-management: A mixed method study.","authors":"Michael Gudgeon, Amanda Wilkinson, Leigh Hale","doi":"10.1177/17423953211073367","DOIUrl":"https://doi.org/10.1177/17423953211073367","url":null,"abstract":"<p><strong>Objectives: </strong>Individuals self-manage chronic illnesses daily with episodic support provided by healthcare professionals. Learning about supporting self-management should be part of healthcare professional student programme curricular and training. However, little is known about the perceptions and attitudes students hold about supporting patient self-management and whether support for self-management is implemented on clinical placement.</p><p><strong>Methods: </strong>A mixed method approach explored students' perceptions and attitudes to supporting patient self-management via e-survey and semi-structured interviews.</p><p><strong>Results: </strong>Survey data (n = 96; 11 programmes) were analysed descriptively and interviews thematically (n = 10; F = 9; aged 19-34 years; 8 programmes). Survey data suggested participants had a positive attitude towards, and were confident in providing support for self-management, but did not implement it frequently in clinical environments. One main theme \"<i>Self-management support is puzzling\"</i> identified the uncertainty around what students thought their role was or how to enact support within the patient interaction. A smaller theme <i>\"Self-management support is valuable\"</i> showed participants were open to learning more about how to support patient self-management.</p><p><strong>Discussion: </strong>We suggest more explicit and frequent learning opportunities need to be provided for healthcare professional students to learn how to support patient self-management, with particular emphasis on involving family and incorporating self-management tools within the patient encounter.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 2","pages":"395-408"},"PeriodicalIF":1.3,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9413963","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-06-01DOI: 10.1177/17423953221076984
Kate Zha, Jill Brook, Abigail McLaughlin, Svetlana Blitshteyn
Objectives: Postural orthostatic tachycardia syndrome (POTS) is a chronic disorder of the autonomic nervous system that is associated with orthostatic intolerance (OI) and gastrointestinal (GI) symptoms. We aimed to determine if a gluten-free diet (GFD) may be an effective treatment in patients with POTS.
Methods: Patients with confirmed POTS and without celiac disease who followed GFD for 4 weeks retrospectively completed pre- and post- GFD COMPASS-31 questionnaires. Paired-samples t-tests were conducted to compare COMPASS-31 scores before and after adopting GFD.
Results: All 20 patients (all females, age 16-62 years (mean age 33)), had POTS symptoms for 1-30 years (mean 10.8, SD = 10.23 years). Eleven patients had co-morbid mast cell activation syndrome, and 8 had hypermobile Ehlers-Danlos syndrome. Pre-GFD COMPASS-31 scores (mean 57.8) were significantly higher than post-GFD scores (mean 38.2, t(19) = -8.92, p < 0.00001), with the largest improvement noted in the OI (p < 0.00001), vasomotor, (p = 0.0034), and GI (p = 0.0004) domains and with a mean reduction in total COMPASS-31 score by 33.9% after implementing GFD. All patients reported improved symptoms on GFD with mean self-assessed improvement of 50.5% (range 10-99%).
Discussion: GFD may be effective in reducing the symptom burden in patients with POTS, particularly in the OI, vasomotor, and GI symptom domains. Large prospective studies are necessary to confirm whether GFD is an effective long-term treatment option for patients.
{"title":"Gluten-free diet in postural orthostatic tachycardia syndrome (POTS).","authors":"Kate Zha, Jill Brook, Abigail McLaughlin, Svetlana Blitshteyn","doi":"10.1177/17423953221076984","DOIUrl":"https://doi.org/10.1177/17423953221076984","url":null,"abstract":"<p><strong>Objectives: </strong>Postural orthostatic tachycardia syndrome (POTS) is a chronic disorder of the autonomic nervous system that is associated with orthostatic intolerance (OI) and gastrointestinal (GI) symptoms. We aimed to determine if a gluten-free diet (GFD) may be an effective treatment in patients with POTS.</p><p><strong>Methods: </strong>Patients with confirmed POTS and without celiac disease who followed GFD for 4 weeks retrospectively completed pre- and post- GFD COMPASS-31 questionnaires. Paired-samples t-tests were conducted to compare COMPASS-31 scores before and after adopting GFD.</p><p><strong>Results: </strong>All 20 patients (all females, age 16-62 years (mean age 33)), had POTS symptoms for 1-30 years (mean 10.8, SD = 10.23 years). Eleven patients had co-morbid mast cell activation syndrome, and 8 had hypermobile Ehlers-Danlos syndrome. Pre-GFD COMPASS-31 scores (mean 57.8) were significantly higher than post-GFD scores (mean 38.2, t(19) = -8.92, p < 0.00001), with the largest improvement noted in the OI (p < 0.00001), vasomotor, (p = 0.0034), and GI (p = 0.0004) domains and with a mean reduction in total COMPASS-31 score by 33.9% after implementing GFD. All patients reported improved symptoms on GFD with mean self-assessed improvement of 50.5% (range 10-99%).</p><p><strong>Discussion: </strong>GFD may be effective in reducing the symptom burden in patients with POTS, particularly in the OI, vasomotor, and GI symptom domains. Large prospective studies are necessary to confirm whether GFD is an effective long-term treatment option for patients.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 2","pages":"409-417"},"PeriodicalIF":1.3,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9413965","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2023-06-01DOI: 10.1177/17423953211069090
Elizabeth Coates, Nicolò Zarotti, Isobel Williams, Sean White, Vanessa Halliday, Daniel Beever, Gemma Hackney, Theocharis Stavroulakis, David White, Paul Norman, Christopher McDermott
Objectives: Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals.
Methods: Interviews with 18 pwALS and 16 informal carers, and focus groups with 51 healthcare professionals. Data were analysed using template analysis and mapped to the COM-B model and Theoretical Domains Framework (TDF).
Results: All three COM-B components (Capability, Opportunity and Motivation) are important to achieving high calorie diets in pwALS. Eleven TDF domains were identified: Physical skills (ALS symptoms); Knowledge (about high calorie diets and healthy eating); Memory, attention, and decision processes (reflecting cognitive difficulties); Environmental context/resources (availability of informal and formal carers); Social influences (social aspects of eating); Beliefs about consequences (healthy eating vs. high calorie diets); Identity (interest in health lifestyles); Goals (sense of control); Reinforcement (eating habits); and Optimism and Emotion (low mood, poor appetite).
Discussion: To promote high calorie diets for pwALS, greater clarity around the rationale and content of recommended diets is needed. Interventions should be tailored to patient symptoms, preferences, motivations, and opportunities.
{"title":"Patient, carer and healthcare professional perspectives on increasing calorie intake in Amyotrophic Lateral Sclerosis.","authors":"Elizabeth Coates, Nicolò Zarotti, Isobel Williams, Sean White, Vanessa Halliday, Daniel Beever, Gemma Hackney, Theocharis Stavroulakis, David White, Paul Norman, Christopher McDermott","doi":"10.1177/17423953211069090","DOIUrl":"https://doi.org/10.1177/17423953211069090","url":null,"abstract":"<p><strong>Objectives: </strong>Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals.</p><p><strong>Methods: </strong>Interviews with 18 pwALS and 16 informal carers, and focus groups with 51 healthcare professionals. Data were analysed using template analysis and mapped to the COM-B model and Theoretical Domains Framework (TDF).</p><p><strong>Results: </strong>All three COM-B components (Capability, Opportunity and Motivation) are important to achieving high calorie diets in pwALS. Eleven TDF domains were identified: Physical skills (ALS symptoms); Knowledge (about high calorie diets and healthy eating); Memory, attention, and decision processes (reflecting cognitive difficulties); Environmental context/resources (availability of informal and formal carers); Social influences (social aspects of eating); Beliefs about consequences (healthy eating vs. high calorie diets); Identity (interest in health lifestyles); Goals (sense of control); Reinforcement (eating habits); and Optimism and Emotion (low mood, poor appetite).</p><p><strong>Discussion: </strong>To promote high calorie diets for pwALS, greater clarity around the rationale and content of recommended diets is needed. Interventions should be tailored to patient symptoms, preferences, motivations, and opportunities.</p>","PeriodicalId":48530,"journal":{"name":"Chronic Illness","volume":"19 2","pages":"368-382"},"PeriodicalIF":1.3,"publicationDate":"2023-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9999280/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9413560","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}