Effect of non-pharmacological interventions on symptoms and quality of life in patients with hematological malignancies - A systematic review.

BACKGROUND: Non-pharmacological interventions have the potential to enhance health-related quality of life (HRQoL) through symptom management. This systematic review aims to identify, collate, and assess randomized controlled trials investigating the effect of non-pharmacological interventions on symptoms and HRQoL within hematology. METHODS: MEDLINE/PUBMED, EMBASE, CINAHL, PSYCINFO and COCHRANE were searched up to April 2021. Outcomes were changes in symptoms and HRQoL. RESULTS: Sixty-five studies were categorized into five intervention types: Mind/body (n=9), Web-based (n=9), Music/art (n=6), Consultation-based (n=4), and Physical activity (n=37). We found significantly reduced fatigue (n=12 studies), anxiety (n=8) and depression (n=7), with 11 studies showing significant improvements in HRQoL. CONCLUSIONS: The evidence for non-pharmacological interventions shows substantial variation in efficacy and methodological quality. While specific symptoms and HRQoL outcomes significantly favored the intervention, no particular intervention can be emphasized as more favorable, given the inability to conduct a meta-analysis.

The impact of a patient decision aid on treatment choices after anterior cruciate ligament injuries.

PURPOSE: The present study aimed to investigate whether exposure to a patient decision aid (PDA) had an impact on the proportion of patients selecting non-surgical or surgical treatments after anterior cruciate ligament (ACL) injuries and whether exposure to a PDA affected the proportion of patients switching from non-surgical to surgical treatment within the first year. METHODS: In a consecutive case series, proportions of surgery and non-surgery were compared before and after patients' exposure to a PDA. Data were collected from the health records of patients with ACL injuries who presented to the Clinic of Sports Traumatology. To identify proportional differences between the two groups, t-tests and proportion tests were used. RESULTS: In total, 1,053 patients with ACL injuries were included: 563 patients with no exposure to the PDA (January 2015 to January 2017) and 490 patients with exposure to the PDA (January 2017 to January 2019). Before implementing the PDA, 27% of the patients selected non-surgical treatment. After implementing the PDA, 30% choose non-surgical treatment (p > 0.05). Before implementing the PDA, 21% of patients who initially chose non-surgical treatment had surgery within the first year. After implementation of the PDA, this number fell to 16%, but the difference was not statistically significant (p > 0,05). CONCLUSION: Exposure to the PDA did not significantly alter the proportion of ACL injury patients selecting non-surgical or surgical treatments or the proportion of patients switching to surgery within the first year.

Development and Test of a Decision Aid for Shared Decision Making in Patients with Anterior Cruciate Ligament Injury.

Background. Patients with anterior crucial ligament injury are faced with a choice between surgery or nonsurgical treatment with intensive rehabilitation. Patients must be involved in the decision making to choose a treatment that meets their individual values, lifestyle, and conditions. The aim of the study was to describe, develop, and evaluate a patient decision aid to support shared decision making. Methods. The development of a patient decision aid was based on international criteria, current literature, and former patients' experiences and suggestions on how to optimize the decision-making process. The patient decision aid was evaluated by the SDM-Q9 questionnaire and semistructured interviews with patients and doctors. Results. On a scale from 0 to 5, patients experienced a high degree of shared decision making in their treatment decision both before (score 4.3) and after (score 4.3) implementation of the patient decision aid (P = .72). From interviews, patients expressed that they found the patient decision aid very useful. Reflection time was especially important for some patients. Doctors reported that the patient decision aid improved shared decision making by supporting the dialogue clarifying patients' values concerning issues important for treatment choices. Conclusion. A systematic process involving patients with an anterior crucial ligament injury was successfully used to develop a patient decision aid for treatment options. No statistically significant difference in the SDM-Q9 score was found presumably caused by the ceiling effect. However, patients experienced the decision aid as very useful when making treatment decisions, and doctors reported that it improved the dialogue clarifying patients' values important for the treatment options. The developing process and patient decision aid can be used as inspiration in similar situations to increase shared decision making in treatment choices. Highlights: A patient decision aid for anterior cruciate ligament injured patients was developed based on international criteria, the current literature, and patients' experiences and suggestions on how to optimize the decision-making process about surgical and nonsurgical treatment.The decision aid improved shared decision making by supporting the dialog between the patient and the doctor to clarify the patients' values concerning issues important for the treatment options.

Effect of patient-reported outcomes as a dialogue-based tool in cancer consultations on patient self-management and health-related quality of life: a clinical, controlled trial.

BACKGROUND: With increased survival among patients with metastatic melanoma and limited time with health care providers, patients are expected to assume a more active role in managing their treatment and care. Activated patients have the knowledge, skills, and confidence to make effective solutions to self-manage health. The use of patient-reported outcomes (PRO) could have the potential to enhance patient activation. However, PRO-based interventions that facilitate an activation in patients with metastatic melanoma are lacking and warranted. MATERIAL AND METHODS: In this prospective non-randomized controlled, clinical trial, patients with metastatic melanoma were assigned to either the intervention (systematic feedback and discussion of PRO during consultation) given at one hospital or the control group (treatment as usual) if they received treatment from two other hospitals in Denmark. The primary outcome was the patient activation measure (PAM), which reflects self-management. Secondary outcomes were health-related quality of life (HRQoL), self-efficacy, and Patient-Physician interaction. Outcomes were measured at baseline, and after 3, 6, and 12 months. The analysis of the effect from baseline to 12 months employed mixed-effects modeling. RESULTS: Between 2017 and 2019, patients were allocated to either the intervention group (n = 137) or the control group (n = 142). We found no significant difference in the course of patient activation between the two groups over time. The course of HRQoL was statistically significantly improved by the intervention compared to the control group. Especially, females in the intervention group performed better than males. The other secondary outcomes were not improved by the intervention. CONCLUSION: The intervention did not improve knowledge, skills, and confidence for self-management for patients with metastatic melanoma. Neither did it improve coping self-efficacy nor perceived efficacy in Patient-Physician interaction. However, the results suggest that the intervention can have a significant impact on HRQoL and in particular social and emotional well-being among the females.

Non-curative surgical oncology: postoperative needs and preferences.

OBJECTIVE: When intended curative cancer surgery is not completed, the postoperative transition to palliative care represents a prognostic landmark to patients and their families. In patients referred for highly specialised surgery for peritoneal metastases from the intestinal tract and ovaries, surgery is not performed in approximately 25%. Still, little is known of their postoperative needs and preferences. METHODS: We performed 14 qualitative research interviews with 12 patients (four men and eight women, aged 41-85 years) undergoing surgery for peritoneal metastases; five of these were together with a relative. Five of the participants had ovarian, and seven had colorectal cancer (four men and seven women). The interviews followed a semistructured interview guide, were audio recorded, transcribed verbatim and analysed using meaning condensation. RESULTS: Patients accepted the surgeon's decision of refraining from the intended surgery. During the postoperative period, when realising the prognostic consequences, their needs changed rapidly, in some cases from day to day, and gradually they developed a reoriented focus on their lives. The findings were framed by two themes dealing with 'Change in treatment strategy' and 'Physical and psychosocial aspects of not undergoing curative surgery'. CONCLUSION: When curative cancer surgery is not completed as intended, patient-centred communication is essential for patients' psychosocial reorientation and quality of life. Further, to support their well-being and action competences, patients have a need for basic supportive care and physical restitution. Finally, high-quality postoperative palliative care needs to be coordinated, which requires staff training and reorganisation of pathways.

Patient ambassador support in newly diagnosed patients with acute leukemia during treatment: a feasibility study.

PURPOSE: This study investigated the feasibility of patient ambassador support in newly diagnosed patients with acute leukemia during treatment. METHODS: A multicenter single-arm feasibility study that included patients newly diagnosed with acute leukemia (n = 36) and patient ambassadors previously treated for acute leukemia (n = 25). Prior to the intervention, all patient ambassadors attended a 6-h group training program. In the intervention, patient ambassadors provided 12 weeks of support for patients within 2 weeks of being diagnosed. Outcome measures included feasibility (primary outcome), safety, anxiety, and depression measured by the Hospital Anxiety and Depression Scale, quality of life by the Functional Assessment of Cancer Therapy-Leukemia and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire, and symptom burden by MD Anderson Symptom Inventory, the Patient Activation Measure, and the General Self-Efficacy Scale. RESULTS: Patient ambassador support was feasible and safe in this population. Patients and patient ambassadors reported high satisfaction with the individually adjusted support, and patients improved in psychosocial outcomes over time. Patient ambassadors maintained their psychosocial baseline level, with no adverse events, and used the available support to exchange experiences with other patient ambassadors and to manage challenges. CONCLUSION: The patient ambassador support program is feasible and has the potential to be a new model of care incorporated in the hematology clinical care setting, creating an active partnership between patients and former patients. This may strengthen the existing supportive care services for patients with acute leukemia. TRIAL REGISTRATION: NCT03493906.

The impact of patient involvement in research: a case study of the planning, conduct and dissemination of a clinical, controlled trial.

BACKGROUND: The interest in patient and public involvement (PPI) in health research is increasing. However, the experience and knowledge of PPI throughout the entire research process and especially in the analysis are limited. We explored ways to embrace the perspectives of patients in a research process, and the impact and challenges our collaboration has had on patients, researchers, and the research outcomes. METHODS: This is an explorative single case study of a Danish, clinical, controlled intervention trial and a nested intervention fidelity study included herein. Five patient representatives with metastatic melanoma were part of designing, undertaking and disseminating the trial where the effect of using patient-reported outcome (PRO)-measures as a dialogue tool in the patient-physician consultation was tested. In the fidelity study, audio-recorded consultations were analyzed after training in the Verona Coding Definitions of Emotional Sequences (VR-CoDES). Results were jointly disseminated at an international scientific conference. The outcomes, impact, and challenges were explored through a workshop. RESULTS: In the design phase, we selected PRO-measures and validated the dialogue tool. The information sheet was adjusted according to the patients' suggestions. The analysis of the fidelity study showed that patients and researchers had a high consensus on the coding of emotional cues and concerns. The patients contributed with a new vocabulary and perspective on the dialogue, and they validated the results. PPI caused considerations related to emotional (sadness/sorrow and existential thoughts), administrative (e.g. arranging meetings, balancing work and small talk) and intellectual (e.g. avoiding information harm, continuing activities despite the death of patients) investments. A limitation of the study was the lack of use of a solid evaluation tool to determine the impact of PPI. CONCLUSION: PPI throughout the process and co-creation in the analysis was feasible and beneficial. The case is unique in the degree of workable details, sustainability, and transparency. Moreover, the co-creation provides ideas of ways to operationalize PPI. An evaluation workshop revealed considerations about emotional, administrative and intellectual investments - best described as tacit, yet important 'work'. This knowledge and experience can be applied to other studies where patients are partners in the research. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT03163433, registration date: 8th May 2017.

Patient ambassador support: Experiences of the mentorship between newly diagnosed patients with acute leukaemia and their patient ambassadors.

OBJECTIVE: The study explores how newly diagnosed patients with acute leukaemia and their patient ambassadors experience the mentorship during the patient ambassador support programme. METHODS: Explorative semi-structured individual interviews (n = 28) were carried out in patients with acute leukaemia (n = 15) and their patient ambassadors (n = 13). Interpretive description was the methodological framework used for the thematic analysis of the qualitative interview data. RESULTS: Identified themes were as follows: (a) exchanging life experiences (subthemes: individualised support and a meaningful return); (b) existential cohesion; (c) interreflection; and (d) terms and conditions (subtheme: break in journey). Patients experienced a feeling of being understood, the cohesion leading to hope and a feeling of being able to cope with their situation. Patient ambassadors experienced a sense of meaningfulness and gratitude for life. CONCLUSIONS: Patients and patient ambassadors experienced benefits from the individualised support. Their shared experiences created a connection and mutual mirroring, which led to a sense of hope and gratitude for life. Initiatives that introduce peer-to-peer support in newly diagnosed patients with acute leukaemia as part of treatment and in daily clinical practice are crucial. Future studies should further examine the feasibility of peer-to-peer support interventions along the trajectory of acute leukaemia.

The development of PROmunication: a training-tool for clinicians using patient-reported outcomes to promote patient-centred communication in clinical cancer settings.

BACKGROUND: The value of using real-time patient-reported outcome (PRO) measures in cancer communication has gained attention both in the clinic and in research. Despite this, no internationally accepted guidelines or training programs for clinicians on how to engage in patient-centred communication based on PROs exist. Lack of training may complicate implementation and systematic use of PROs in the clinic. We aimed to develop a short and feasible manual and training session in PRO-based dialogue rooted in patient-centred communication, coined PROmunication. METHODS: PROmunication was implemented in two studies using PROs in different clinical cancer settings. We interviewed clinicians twice during the development phase. First, adopting a clinical perspective, they provided ideas for content, length and structure of the training session and the manual. Second, they approved the draft of the manual with minor adjustments on how to document clinician-patient communication. The final version of the PROmunication tool was built on clinicians' input, theory on patient-centred communication, a literature review, and didactic considerations. RESULTS: The one-page manual gave clinicians a brief and clear overview of how to prepare for, undergo and document a PRO-based consultation. Illustrations and verbal phrases were offered to operationalize and facilitate patient-centred communication. The training session included elements like evidence-based knowledge about the rationale, benefits and challenges of using PROs and comprised theory, experimental training and instructions for the use of the manual in clinical practice. Ad hoc training and feedback in the clinic followed the training session. CONCLUSIONS: This paper presents the development of a short, theory-driven manual and training session intended to support and engage clinicians in PRO-based dialogue leading to patient-centred communication. Further testing of the tool is necessary and adjustments may be required if the PROmunication tool should be applied in other clinical settings were patients are seen regularly. An evaluation of the tool is planned to be performed in future studies. Training in PROmunication may further systematic and consistent use of PRO data in the consultation, leading to patient-centred consultations and increased patient involvement.

Patients' experiences and social support needs following the diagnosis and initial treatment of acute leukemia - A qualitative study.

PURPOSE: This study explores how newly diagnosed patients with acute leukemia (AL) experience the diagnosis and the initial treatment, and their need and preferences for social support. METHODS: Explorative semi-structured individual interviews were carried out in patients with AL (n = 18) four to sixteen weeks post diagnosis. Thematic analysis was used to analyze the qualitative interview data. RESULTS: Identified themes were 1) Jolted by the diagnosis, and subtheme Loss of personal autonomy; 2) Restoring normality in everyday life, and subtheme Facing a new social identity; and 3) A lifeline of hope. Being newly diagnosed with AL was experienced as traumatic, which negatively affected personal autonomy and everyday life. There was a pressing need to restore a sense of normality in everyday life while managing a new social identity as a cancer patient. Social support from family, friends and other patients were invaluable and experienced as an important lifeline. CONCLUSION: Receiving a life threatening diagnose and undergoing chemotherapeutic treatment had a negative impact on everyday life which required re-establishing daily life activities. This increased the need for social support which had a distinct role in facilitating the patients' coping strategy. CLINICAL IMPLICATIONS: It is important to support and strengthen the patient's social network from the time of diagnosis. Future studies should examine the feasibility and benefit of experienced-based social support from peers (former patients) to patients with AL.

Patient involvement in comprehensive, complex cancer surgery: Perspectives of patients, relatives and health professionals.

We investigated the perspectives of patients, relatives and health professionals on the drivers and barriers to patient involvement (PI) in the treatment of peritoneal carcinomatosis with cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC). During 2016-2017, individual and focus group interviews were conducted with purposively selected participants during CRS and HIPEC, supplemented by field observations. This material was analysed using meaning condensation (Kvale). Fifteen patients, eight relatives and nine health professionals participated in 31 individual and two focus group interviews, supplemented by 37 observations. The findings were structured into themes concerning treatment decisions, organisation of pathways, knowledge of the patient and life during treatment. Deciding to treat was determined not only by preoperative biomedical information, personal preferences but also findings during surgery. This circumstance put the patients under mental pressure and affected their ability to process the offered information. They furthermore perceived the pathway as complex and occasionally unclear, leading them to attempt to coordinate transitions themselves. The study has highlighted barriers to, rather than drivers of, PI. To promote PI during comprehensive complex cancer surgery, we suggest that patients and relatives are offered patient-centred care, such as support in posing questions, overview of their treatment pathway and coherent transitions.

Nurse-led Motivational Telephone Follow-up After Same-day Percutaneous Coronary Intervention Reduces Readmission and Contacts to General Practice.

BACKGROUND: Same-day discharge of patients undergoing percutaneous coronary intervention (PCI) may challenge preparation of patients for discharge. OBJECTIVE: The objective of this study was to investigate whether nurse-led telephone follow-up influenced patients' self-management post-PCI. METHODS: We performed a randomized study with an allocation rate of 1:1. A standardized nurse-led motivational telephone consultation was conducted between 2 and 5 days after PCI to support adherence to medical therapy, follow-up activities, emotional well-being, and healthy lifestyle. The control group received usual care and discharge procedures. Primary outcome was adherence to use of P2Y12 inhibitor (clopidogrel or ticagrelor) therapy at 30 days of follow-up. RESULTS: We consecutively included 294 elective patients (83%) undergoing PCI and with planned same-day discharge. Adherence to P2Y12 inhibitors was not influenced by the intervention (intervention vs control, 95% vs 93%, respectively; P = .627). However, the proportion of patients readmitted (8% vs 16%, P = .048), as well as self-initiated contacts to general practitioners (29% vs 42%, P = .020), was lower in the intervention group compared with the control group. Patients in the intervention group were more likely to know how to manage symptoms of angina pectoris (90% vs 80%, P = .015), and a higher proportion of patients in the intervention group commenced healthy physical activities (53% vs 41%, P = .043). CONCLUSION: Nurse-led motivational telephone follow-up did not influence adherence to antiplatelet medical therapy after PCI. However, the intervention positively influenced self-management of angina pectoris and reduced hospital readmissions and self-initiated contacts to general practitioners and hospitals.

Surgical breast cancer patient pathway: Experiences of patients and relatives and their unmet needs.

BACKGROUND AND AIM: Breast cancer is the most common cancer disease in women worldwide. In Denmark, the law prescribes cancer patient pathways (CPPs) in general and thus also for breast cancer. Although results from patient satisfaction surveys show overall satisfaction with the pathway, a call for improvement has been voiced for some areas. The aim of this study was to explore patients' and relatives' experiences with the surgical breast CPP and to identify any unmet needs. METHOD: This study was based on focus groups with patients who had surgery for breast cancer, and their relatives. The settings were two Danish surgical breast cancer clinics. FINDINGS: Overall, patients and relatives found the structure of the surgical breast CPP satisfactory. The time in the surgical department was short, and most patients found it difficult to cope with the situation. Empathy and a supportive relationship between patients, relatives and health-care professionals were of great importance. Five key points were identified in which some of the participants had unmet needs. Suggestions for change were related to information, communication, choice of treatment, flexibility in the pathway and easy access to the clinic after surgery. CONCLUSION: Although patients and relatives found the CPP for breast cancer satisfactory and well planned, suggestions for change were made relating to unmet needs with respect to five key points in the pathway. Implementing findings from this study in clinical practice requires co-operation between health-care professionals and support from the leaders of the organization.

Development of a Cancer Self-management Education Programme for Women with Breast Cancer at the End of Primary Treatment.

Breast cancer survivors have specific healthcare needs. As a result of their disease and treatment, they have to adapt to different physical and psychosocial late effects. Unfortunately, several studies have documented insufficiency in the survivorship healthcare system. The aim of this paper was to describe the process of development and testing of a novel Cancer Self-management Education programme (CSME programme) to improve patient-reported self-management and self-efficacy for patients with breast cancer who were at the end of primary treatment. The development of the educational programme was inspired by the Plan-Do-Study-Act (PDSA) circle and based on person-centred principles. It was conducted at a Danish university hospital. Nine oncology healthcare providers, two external experts in patient education and five patients were involved in the development and testing of the education programme. Implementation of dialogue-based tools was used as an educational learning instrument in the SCME programme. The PDSA approach to the development of the CSME programme resulted in a person-centred programme that could improve self-management and self-efficacy in the survivorship phase of patients with breast cancer.

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.

Healthcare Professionals' Attitudes to Rehabilitation Programming for Male Cancer Survivors.

PURPOSE: The purpose of this study is to describe and interpret the attitudes and conduct of hospital healthcare professionals (HCPs) in association with male cancer survivors and their municipal rehabilitation participation. DESIGN: Ethnographic fieldwork was conducted, consisting of participant observation and nine semistructured focus group interviews with 58 hospital HCPs. METHODS: Using interpretive description methodology with symbolic interaction as a theoretical framework, data were collected through fieldwork in three oncology wards in Denmark. FINDINGS: Attitudes about both gender and rehabilitation were identified as overarching obstructions within hospital HCP conduct toward promoting men's participation in cancer rehabilitation. CONCLUSIONS: Gender and rehabilitation perceptions formed barriers in this context, suggesting that male cancer survivors' rehabilitation outcomes may be compromised by HCP attitudes and conduct. CLINICAL RELEVANCE: These findings provide insight into approaches to guide HCPs to take responsibility for rehabilitation and to take gender into account in their work.

Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: A qualitative study of the perspective of professional caregivers.

AIMS AND OBJECTIVES: To examine the experiences with palliative care in people with chronic obstructive pulmonary disease among professional caregivers in a Danish home care setting. BACKGROUND: Many patients with advanced chronic obstructive pulmonary disease depend on professional caregivers in the primary sector to provide assistance and care. However, chronic obstructive pulmonary disease patients receive no or only very little palliative care compared to patients with cancer although they may have many burdensome symptoms. DESIGN: Qualitative explorative study. METHODS: In 2013-2014, ten professional caregivers from three districts in a Danish municipality were followed during home visits to patients with chronic obstructive pulmonary disease and individual interviews about palliative care were subsequently conducted. In 2014, 66 professional caregivers, representing eleven home care districts, participated in ten group discussions about palliative care needs in this group of patients. Data were analysed using qualitative descriptive analysis. RESULTS: The study revealed a nonawareness of palliative care for patients with chronic obstructive pulmonary disease among the professional caregivers who expressed vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care, lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care. Nonawareness and organisational barriers led to difficulties in identifying palliative care needs and reluctance to initiate conversations about palliative care. CONCLUSION: The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may be needed to reduce the barriers to palliative care. RELEVANCE TO CLINICAL PRACTICE: The findings uncovered barriers to palliative care that must be addressed. Targeted educational programmes and organisational changes may increase the ability to identify palliative care needs and initiate and evaluate palliative interventions.

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.

Interdisciplinary Cognitive-Behavioral Therapy as Part of Lumbar Spinal Fusion Surgery Rehabilitation: Experience of Patients With Chronic Low Back Pain.

BACKGROUND: Patients receiving lumbar spinal fusion surgery often have persisting postoperative pain negatively affecting their daily life. These patients may be helped by interdisciplinary cognitive-behavioral therapy which is recognized as an effective intervention for improving beneficial pain coping behavior, thereby facilitating the rehabilitation process of patients with chronic pain. PURPOSE: The purpose of this study was to describe the lived experience of patients recovering from lumbar spinal fusion surgery and to explore potential similarities and disparities in pain coping behavior between receivers and nonreceivers of interdisciplinary cognitive-behavioral group therapy. METHODS: We conducted semistructured interviews with 10 patients; 5 receiving cognitive-behavioral therapy in connection with their lumbar spinal fusion surgery and 5 receiving usual care. We conducted a phenomenological analysis to reach our first aim and then conducted a comparative content analysis to reach our second aim. RESULTS: Patients' postoperative experience was characterized by the need to adapt to the limitations imposed by back discomfort (coexisting with the back), need for recognition and support from others regarding their pain, a relatively long rehabilitation period during which they "awaited the result of surgery", and ambivalence toward analgesics. The patients in both groups had similar negative perception of analgesics and tended to abstain from them to avoid addiction. Coping behavior apparently differed among receivers and nonreceivers of interdisciplinary cognitive-behavioral group therapy. Receivers prevented or minimized pain by resting before pain onset, whereas nonreceivers awaited pain onset before resting. CONCLUSION: The postoperative experience entailed ambivalence, causing uncertainty, worry and insecurity. This ambivalence was relieved when others recognized the patient's pain and offered support. Cognitive-behavioral therapy as part of rehabilitation may have encouraged beneficial pain coping behavior by altering patients' pain perception and coping behavior, thereby reducing adverse effects of pain.