Experiences of patients with advanced COPD affiliated to a cross-sectorial outgoing lung team: A qualitative study.

AIM: To explore experiences of patients affiliated to a cross-sectorial outgoing lung team. BACKGROUND: The outgoing lung team consisted of respiratory nurses from the hospital and community nurses. The lung team offered 24/7 help to patients with advanced chronic obstructive pulmonary disease (COPD) through visits and/or treatment in the patients' home. Affiliation to the lung team reduced both hospitalizations and length of hospital stay due to acute exacerbation of COPD. However, based on questionnaires on health-related quality of life, no significant differences were found between patients affiliated to the lung team and patients receiving usual care. DESIGN: A qualitative interview study. METHODS: In total, 16 patients, aged 61-88 years were interviewed between February 2019 and July 2021. They had been affiliated to the outgoing lung team for 1-3 years. Semi-structured interviews were conducted in the patients' home and audio-recorded after informed consent was obtained. The interviews were transcribed verbatim and analysed, inspired by systematic text condensation by Malterud. FINDINGS: Four themes emerged from the analysis: (1) feeling safe, (2) improvements in living with COPD, (3) avoiding hospitalization and (4) satisfied with staying at home. CONCLUSION: Affiliation to the cross-sectorial outgoing lung team gave the patients peace of mind and improved their ability to live with advanced COPD. The patients preferred contacting the lung team because they could stay at home and receive treatment, and thus avoid hospitalization. IMPACT: The findings from this study support that municipalities should consider implementing an outgoing lung team, as it has the potential to bring several benefits, including improving patient self-management. REPORTING METHOD: The manuscript adhered to Consolidated criteria for reporting qualitative research (COREQ) guideline. PATIENT OR PUBLIC CONTRIBUTION: Patients were interviewed. Additionally, no patient or public contributed to the design or conduction of the study, analysis, or interpretation of the data.

COPD-Related Anxiety: A Systematic Review of Patient Perspectives.

Background: Anxiety in patients with chronic obstructive pulmonary disease (COPD) is prevalent but often unidentified and therefore not adequately managed. Clinicians find it difficult to detect anxiety symptoms and to differentiate subclinical anxiety from anxiety disorders, because of the considerable overlap between symptoms of COPD and anxiety. Purpose: We synthesized existing qualitative research on patients' experiences of COPD-related anxiety with the purpose of gaining a richer understanding and proposing a model of the construct. Methods: Searches for qualitative studies of patients' experiences of COPD-related anxiety were conducted independently by two authors in the databases of PubMed (MEDLINE), CINAHL (EBSCO), and PsycInfo (APA). English-language studies including patients diagnosed with COPD were reviewed, and data were analyzed using thematic analysis. Results: A total of 41 studies were included in the review. Four themes related to COPD-related anxiety were identified: initial events; internal maintaining factors; external maintaining factors; and behavioral maintaining factors. Based on the identified four themes, a conceptual model of COPD-related anxiety from the patient perspective was developed. Conclusion: A conceptual model of COPD-related anxiety from the patient perspective is now available, with the potential to inform future attempts at improving identification and management of COPD-related anxiety. Future research should focus on the development of a COPD-specific anxiety questionnaire containing domains that are relevant from the patient perspective.

Does affiliation to a cross-sectorial lung team impact well-being, health-related quality of life, symptoms of anxiety and depression and patient involvement in patients with COPD? A randomised controlled trial.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is a progressive lung disease causing limitations in daily life. A cross-sectorial lung team was established for COPD patients at risk of hospitalisation due to exacerbation of COPD. AIMS: To investigate the impact of affiliation to a cross-sectorial lung team on well-being, health-related quality of life, symptoms of anxiety and depression and patient involvement in patients with severe COPD. METHODS: A randomised controlled trial was conducted from September 2017 to March 2020. In total, 109 patients were included for analysis in the study: 53 patients were affiliated to a cross-sectorial lung team and 56 patients received usual care. The patients were included for 1 year. Data were collected at baseline and at follow-up after 1 year. Data were collected using COPD Assessment Test (CAT), Hospital Anxiety and Depression Scale (HADS), EuroQol 5-Dimensions (EQ-5D) and Patient Assessment of Chronic Illness Care (PACIC). RESULTS: The questionnaire response rate was between 84% and 96%. No statistically significant differences were detected between patients affiliated to the cross-sectorial lung team and patients receiving usual care, in either patient's well-being, health-related quality of life, symptoms of anxiety and depression, or patient involvement. However, CAT-total score decreased with -0.21(95%CI: -1.63; 1.20) for patients affiliated to the cross-sectorial lung team and increased with 1.44(95%CI; -0.11; 3.00) for patients receiving usual care. CONCLUSION: Affiliation to the cross-sectorial lung team seems safe as it did not deteriorate the patients' well-being, symptoms of anxiety and depression, health-related quality of life or patient involvement. Further research is needed and interviewing patients to obtain more knowledge on their experiences might be preferable.

Clinical Outcome of a Cross-Sectorial Lung Team Treating Patients with COPD at High Risk of Exacerbation: A Randomized Controlled Trial.

In addition to the financial burden, acute exacerbation of chronic obstructive pulmonary disease (AECOPD) also has a negative impact on health status and disease progression for patients with chronic obstructive pulmonary disease (COPD). The aim of this study was to investigate the effect of affiliation to a cross-sectorial lung team (CLT) on hospitalization and length of hospital stay for patients with COPD and ≥ one severe or two moderate AECOPD events within a year. We conducted a randomized clinical trial between 2017 and 2020. Participants were randomly assigned 1:1 for one year to CLT or usual care (UC). The CLT was available for telephone calls and home visits day and night on the request from patients, and the CLT could initiate home treatment. In total, 56 patients were affiliated to the CLT (Mean: age 71.6 years, FEV1 37.1%) and 57 patients received UC (Mean: age 71.5 years, FEV1; 33.6%). Patients affiliated to the CLT had on average fewer hospitalizations due to AECOPD than patients receiving UC (CLT: 0.59 (95% CI: 0.35; 0.83 - UC: 1.86 (95% CI: 1.12; 2.20; p = 0.002). Patients affiliated to the CLT also had shorter hospital stay on average due to AECOPD (CLT: 3.27(95% CI: 2.39; 4.15 - UC: 4.47 (95% CI: 3.70; 5.24; (p = 0.045). No significant difference in number of severe adverse events, including death, was observed between groups. Affiliation to the CLT seemed safe and reduced both hospitalizations and length of hospital stay related to AECOPD compared to UC.

The impact on severe exacerbations of establishing a cross-sectorial lung team for patients with COPD at high risk of exacerbating: a pilot study.

Background: Exacerbation in Chronic obstructive pulmonary disease (COPD) becomes more frequent with advancing disease severity and often the patients end up being hospitalized. Objective: To evaluate the impact on exacerbations of establishing a cross-sectorial lung team (CLT) for patients with COPD at high risk of exacerbating. Methods: In total, 49 patients with severe COPD were affiliated to a CLT for 6 months. On request from the participants, the CLT was available for telephone calls and home visits day and night to initiate treatment and give advice. Data regarding hospitalizations were collected 3 years prior to the intervention year to predict future numbers of admissions and length of stay. These predictions were compared with the observed data. COPD assessment test (CAT) was conducted before and after intervention. Results: Observed risk of hospitalization (0.54 (95% CI 0.32; 0.90), p = 0.0192)) and length of hospital stay due to COPD (0.41 (95% CI 0.22; 0.76), p = 0.0046)) were significantly lower during the intervention period than predicted. A numerical but non-significant improvement in the total CAT score of 1.10 (95%CI: -0.71;2.91), p = 0.226)) was observed. Conclusion: Affiliation to a CLT seemed to lower the burden of COPD exacerbations in a high-risk population.

Patient involvement in the development of a psychosocial cancer rehabilitation intervention: evaluation of a shared working group with patients and researchers.

PLAIN ENGLISH SUMMARY: The aim of this paper is to present our experiences from a shared working group (SWG) with patient representatives and researchers. The SWG collaborated on developing a psychosocial cancer rehabilitation intervention for women treated for breast cancer and men treated for prostate cancer and on the planning of an effect study of this intervention.The SWG included five patient representatives (three women treated for breast cancer and two men treated for prostate cancer), four researchers and a research assistant. The SWG met four times during the year where the intervention was developed. Data material for the present evaluation study comprises meeting documents, transcriptions of interviews with two patient representatives and three researchers from the SWG, and the primary investigator's field notes.The collaboration between patient representatives and researchers informed both the intervention and the research planning and was rewarding for the involved participants. The well-structured organization of the collaboration had a positive impact on the outcome. In addition, clear goals and clarification of expectations were important. Challenges were encountered in keeping continuity between meetings and carrying out homework as intended. It was crucial for the collaboration that patient representatives had specific knowledge, interest and motivation for the project.Involving patient representatives in the research process heightened the relevancy of the research and the quality of its contents. The SWG gave patient representatives and researchers a better mutual understanding. Overall, the conclusion is that the benefits obtained by involving patient representatives exceeds the additional costs this involves. ABSTRACT: Background The aim of the paper is to present experiences of researchers collaborating with patients in a shared working group comprising patient representatives and researchers. Experiences are deduced from the evaluation of the work in the working group, which collaborated on developing a psychosocial cancer rehabilitation intervention for women treated for breast cancer and men treated for prostate cancer and the planning of a randomized controlled trial that investigates the effect of this intervention. Methods Five patient representatives (three women treated for breast cancer and two men treated for prostate cancer), four researchers and a research assistant participated in the shared working group. The shared working group met four times during the year the intervention was developed. Data material for the present evaluation study was collected from meeting documents, transcriptions of interviews with two patient representatives and three researchers from the shared working group, and the primary investigator's field notes. The data analysis was guided by Sandelowski's qualitative description strategy. Results The collaboration between patient representatives and researchers informed the intervention and the research planning and was rewarding for the involved participants. The well-structured organization of the collaboration had a positive impact on the outcome. Also, clear goals and clarification of expectations were important. Challenges were encountered in ensuring continuity between meetings and carrying out homework as intended. It was considered crucial for the collaboration to recruit patient representatives with specific knowledge, interest and motivation for the project. The direct costs related to the shared working group, including meals, transportation and salary for the research assistant, were small. However, the indirect costs in terms of time spent on planning patient-involving elements of, organizing meetings and evaluation were substantial and demanded a significant amount of extra work for the primary investigator. Conclusion Involving patients in the research process heightened the relevancy of the research and the quality of the research contents. The shared working group influenced both patient representatives and researchers and gave them a better mutual understanding. Overall, the conclusion is that the benefits obtained by involving patients exceed the additional costs related to patient involvement.

Reflections on patient involvement in research and clinical practice: A secondary analysis of women's perceptions and experiences of egg aspiration in fertility treatment.

The importance of patient involvement is increasing in healthcare, and initiatives are constantly implemented to reach the ideal of involved and educated patients. This secondary analysis was initially embedded in a randomized controlled study where the aim was to gain insight into perceptions and experiences within a group of women undergoing fertility treatment through two focus group interviews. In this secondary analysis, we investigated how patient involvement was strived for in both clinical practice and research. During the analysis, it became apparent that the women exercised and maintained a clear perspective on their hope for a child, Project Child, while the interviewer pursued a treatment perspective, Project Treatment. Despite different perspectives, the conversation during the interviews seemed effortless, and it became apparent how the interviewer and the participants were actually focusing partly on the same, but primarily on different issues but without addressing or acknowledging this. Knowledge and awareness of the difference in perspectives is important when healthcare professionals seek to involve patients both in clinical practice and in research. Patient involvement in both research and clinical practice has shown to be a challenge and entails that pathways are organized and decisions shared by healthcare professionals.

Flying the nest: a challenge for young adults with cystic fibrosis and their parents.

OBJECTIVES: As young patients with cystic fibrosis (CF) grow up, they are expected to take increasing responsibility for the treatment and care of their disease. The aim of this study was to explore the disease-related challenges faced by young adults with CF and their parents, when they leave home. MATERIALS AND METHODS: A questionnaire survey of Danish patients with CF aged 18-25 years and their parents was conducted. The questionnaires were based on focus-group interviews with young adults with CF and their parents, and addressed challenges faced in the transition phase between childhood and adulthood, including different areas of disease management in everyday life. RESULTS: Among all of the patients invited, 62% (n=58/94) of young adults and 53% (n=99/188) of their parents participated in the study. In total, 40% of the 18- to 25-year-olds were living with their parents, and the parents continued to play an active role in the daily care of their offspring's disease. Among the young adults who had left home, both the patients and their parents reported many difficulties regarding disease management; the young adults reported difficulties in contacting social services and in affording and preparing sufficient CF-focused meals, and their parents reported difficulties in answering questions concerning social rights and CF in general, and in knowing how to give their offspring the best help, how much to interfere, and how to relinquish control of managing their offspring's disease. CONCLUSION: Young adults with CF who have left home have difficulties in handling the disease and their parents have difficulties in knowing how to give them the best help. There is an urgent need for holistic CF transitional care, including ensuring that young adults master the essential skills for self-management as they leave their parents.

Patient participation in postoperative pain assessment after spine surgery in a recovery unit.

AIMS AND OBJECTIVES: To explore how patients undergoing spine surgery participated in postoperative pain assessment in a recovery unit. BACKGROUND: Despite advances in medicine, pharmaceutical and technical knowledge, patients report considerable postoperative pain after spine surgery. Research shows that patients require efficient individual pain treatment and that their participation has a positive effect on pain treatment. DESIGN: This study was based on a phenomenological hermeneutic design. METHODS: Fifteen qualitative interviews were conducted in 2014. Meaning condensation was used to analyse data. RESULTS: Three themes emerged: (1) communication and knowledge; anaesthesia, analgesics and severe pain affected patients' ability to assess and communicate their pain. (2) Pain assessment using a numerical rating scale; this theme was characterised by individual differences in rating perception. Also, new postoperative pain sensations were described as different kinds of pain and variation in the pain intensity during activity. (3) Patient-nurse relationship; this theme was characterised by reports of frequent and direct contact on the part of the nurses about pain assessment. Patients' lack of knowledge about pain treatment resulted in inactivity and uncertainty of when to ask for analgesics. CONCLUSION: This study indicates that nurses and patients would benefit from building a mutual understanding of pain perceptions and numerical rating scale as this would pave the way for a more accurate pain assessment. Patients' ability to participate in pain assessment was affected by anaesthesia, analgesics and severe pain. Patients needed knowledge about complications and needed to understand when they should ask for analgesics. RELEVANCE TO CLINICAL PRACTICE: Results indicate that patient perceptions of numerical rating scale and variation in patients' ability to communicate in the initial postoperative period should be given more attention to underpin patients' pain assessment. This may be a key factor in ensuring patient participation in pain assessment and thereby improving postoperative pain management.

Lack of evidence of increased risk of bacterial transmission during cystic fibrosis educational programmes.

BACKGROUND: Educational and rehabilitation programmes increase the quality-of-life of patients with cystic fibrosis, but patients are discouraged to participate because of the risk of cross-infections. METHODS: Isolates of Pseudomonas aeruginosa, Staphylococcus aureus and Haemophilus influenzae cultured one year before to one year after attendance were investigated by pulsed field gel electrophoresis, multilocus sequence typing and/or spa-typing. RESULTS: We typed 984 bacterial isolates cultured from 46 patients aged 5-18 years attending educational programmes at Aarhus University Hospital during 2009-2011. There were no cross-infections with P. aeruginosa. Six cases of S. aureus or H. influenzae strain replacement with a new strain-type shared with a fellow attendee were found. However, the probability of acquiring a shared strain of S. aureus or H. influenzae was not increased for patients attending educational programmes. CONCLUSIONS: Transmission of P. aeruginosa, S. aureus and H. influenzae related to attendance to the investigated educational programmes could not be documented.

Barriers to adherence in adolescents and young adults with cystic fibrosis: a questionnaire study in young patients and their parents.

BACKGROUND: Treatment adherence is crucial in patients with cystic fibrosis, but poor adherence is a problem, especially during adolescence. Identification of barriers to treatment adherence and a better understanding of how context shapes barriers is of great importance in the disease. Adolescent reports of barriers to adherence have been studied, but studies of their parents' experience of such barriers have not yet been carried out. The aim of the present study was to explore barriers to treatment adherence identified by young patients with cystic fibrosis and by their parents. METHODS: A questionnaire survey of a cohort of young Danish patients with cystic fibrosis aged 14-25 years and their parents was undertaken. RESULTS: Barriers to treatment adherence were reported by 60% of the patients and by 62% of their parents. Patients and parents agreed that the three most common barriers encountered were lack of time, forgetfulness, and unwillingness to take medication in public. We found a significant positive correlation between reported number of barriers and perceived treatment burden. We also found a statistically significant relationship between the reported number of barriers and treatment adherence. A significant association was found between the number of barriers and the reactions of adolescents/young adults and those of their mothers and fathers, and between the number of barriers and the way the family communicated about cystic fibrosis. CONCLUSION: The present study showed that the majority of adolescents with cystic fibrosis and their parents experienced barriers to treatment adherence. Agreement between adolescents and their parents regarding the level and types of barriers indicates an opportunity for close cooperation between adolescents, their parents, and health care professionals in overcoming adolescent adherence problems.

Parenting adolescents with cystic fibrosis: the adolescents' and young adults' perspectives.

BACKGROUND: When suffering from cystic fibrosis (CF), a number of problems may arise during adolescence; for example, poor adherence. The problems may be attributed to the adolescent being insufficiently prepared for adult life. Research on different ways of parenting adolescents with CF and the influence of different parenting styles on the adolescents' adherence to treatment is still limited. AIM: The aim of this study was to identify the types of parental support that adolescents and young adults with CF want and find helpful in terms of preparing them for adult life. METHODS: Sixteen Danish adolescents with CF, aged 14-25, participated in the study. Two focus group interviews were carried out, one for 14-18-year-olds and one for 19-25-year-olds. Individual interviews were conducted, with three subjects. Using interpretive description strategy, a secondary analysis of the interview data was conducted. RESULTS: The adolescents and young adults wanted their parents educated about the adolescent experience. They wanted their parents to learn a pedagogical parenting style, to learn to trust them, and to learn to gradually transfer responsibility for their medical treatment. Additionally, the adolescents noted that meeting other parents may be beneficial for the parents. CONCLUSION: The findings of this study suggest that adolescents and young adults with CF want their parents to be educated about how to handle adolescents with CF and thereby sufficiently prepare them for adult life.

Exercise and quality of life in patients with cystic fibrosis: A 12-week intervention study.

It was hypothesised that increased exercise capacity is related to improved quality of life (QoL) in patients with cystic fibrosis (CF). A 12-week individually tailored unsupervised aerobic exercise programme was offered to 42 patients with CF. At the start and at the end of the exercise programme, data on QoL, current exercise habits and preferences, anthropometric data, exercise test, and lung function test were collected. Adherence was observed by a heart rate (HR) monitor. A total of 24 patients accepted to be enrolled in the exercise programme and 14 completed the programme. Another 14 patients declined to be enrolled in the exercise programme but completed the Cystic Fibrosis Questionnaire for Adolescents and Adults (CFQ-R 14+). Four patients did not want to participate at all. The 14 patients completing the exercise programme had a significantly increased VO(2max), but they showed no significant change in total QoL score. However, the scores in the domain of treatment burden and emotional functioning increased significantly. There was no significant difference in QoL and lung function between patients participating in the exercise programme (n = 24) and non-participants (n = 14). A 12-week individually tailored unsupervised aerobic exercise programme where HR monitors were used significantly affected VO(2max). Improvement in QoL could not be demonstrated in this study.

Validation of the Danish version of the revised cystic fibrosis quality of life questionnaire in adolescents and adults (CFQ-R14+).

BACKGROUND: Quality of life is an important parameter in the evaluation of quality and outcome of health care and treatment, especially in patients with chronic disorders. The aim of this study was to assess the validity and reliability of the Danish version of the revised disease-specific health-related quality of life questionnaire for adolescents and adults with cystic fibrosis (CFQ-R14+). METHODS: A total of 196 cystic fibrosis (CF) patients completed the CFQ-R14+ (response rate 71%). Forced expiratory volume in 1 s in percentage of predicted (FEV(1)%) and body mass index (BMI) were included as measures of health status. RESULTS: Internal consistency coefficients ranged from 0.54 to 0.95. Eight out of the twelve scales had alpha coefficients above 0.7. Test-retest correlations ranged from 0.42 to 0.88 and they were significant in eight scales. All the CFQ-R+14 scales except the digestive symptoms scale discriminated significantly (p<0.05) between patients with mild, moderate, and severe disease. Nine out of the twelve scales discriminated significantly (p<0.05) between nourished (BMI> or =19) and malnourished (BMI<19) patients. Significant differences between participants and non-responders were found for age, sex and FEV(1) (higher age, more males and lower FEV(1) among non-responders). All of the scales met standards for floor effects (<15% of the responders with the lowest score) but five of the scales failed to meet standards for ceiling effects (>15% of the responders with the highest score). CONCLUSION: The Danish CFQ-R14+ is a reliable and valid instrument for measuring the health-related quality of life in Danish adolescents and adults with CF, though with the exception from a few of its subscales.