Finding the Person in Electronic Health Records. A Mixed-Methods Analysis of Person-Centered Content and Language.

The co-creation and sharing of documentation of person-centered care is important, but challenging in clinical practice. Online access to health records is considered essential to increase patient participation and empowerment in person-centered care provision. The aims of this study were (1) to identify the extent of person-centered content in medical inpatient records and discharge letters; (2) to describe the characteristics of the language and rhetoric used in discharge letters. This was a concurrent, mixed-methods study involving a deductive, quantitative analysis of person-centered content in 69 Patient Accessible Electronic Health Records from patients with pituitary tumors, and an iterative, qualitative language analysis of a nested sample of 57 discharge letters. Both the content and language of inpatient records were mostly patient-centered. Records were concerned with the documentation of symptoms and medical and care interventions. There was little person-centered documentation of patients' preferences, wishes and needs, and shared decision-making. In the discharge letters, written for the patients, some physicians had attempted to write in a person-centered way, using plain language and a narrative. However, most wrote in a style that was reflective of their discourse community, using abbreviations and medical terms. Established norms for documentation in healthcare are a barrier to person-centered documentation. Patients' needs and preferences about documentation should be explored to increase understanding of how person-centered documentation can be achieved in clinical practice.

Striving to be in close proximity to the patient: An interpretive descriptive study of nursing practice from the perspectives of clinically experienced registered nurses.

This paper explores essential characteristics of current nursing practice from the perspectives of clinically experienced registered nurses in various fields of health care in Sweden. Nursing practice has been the subject of much debate in the past and because of its complexity as well as continuous changes in society it is important to continue the debate. A qualitative study, including 16 group interviews with altogether 74 participants, was conducted. Nursing practice was viewed as a multifaceted field. The participants struggled to define nursing but were able to describe it using concrete examples. The analysis, using interpretive description, identified current practice as essentially consisting of: 'A practice pervaded by comprehensive responsibility', 'A practice that recognises a patient's unique needs', 'A practice based on multifaceted knowledge' and 'A practice that mediates between traditional values and changing demands'. Current nursing practice can be understood as striving to be in close proximity to the patient, but in tension with pervasive requirements and societal changes. Going forward, it is necessary to continue to reflect on and discuss the nature of nursing practice in an interprofessional context. Studies from primary and home care are also needed to broaden the understanding of nursing practice.

A national research centre for the evaluation and implementation of person-centred care: Content from the first interventional studies.

BACKGROUND: Person-centred care (PCC) has been suggested as a potential means to improve the care of patients with chronic and long-term disorders. In this regard, a model for PCC was developed by the University of Gothenburg Centre for Person-Centred Care (GPCC). OBJECTIVE: The present study aimed to explore the theoretical frameworks, designs, contexts and intervention characteristics in the first 27 interventional studies conducted based on the ethics for person-centredness provided by the GPCC. DESIGN: Cross-sectional study. SETTING AND PARTICIPANTS: A questionnaire to the principal investigators of the 27 intervention studies financed by the GPCC and conducted between 2010 and 2016. MAIN OUTCOME MEASURES: Theoretical frameworks, contexts of studies, person-centred ethic, and outcome measures. RESULTS: Most of the interventions were based on the same ethical assumptions for person-centredness but theories and models in applying the interventions differed. All studies were controlled; 12 randomized and 15 quasi-experimental. Hospital in- and outpatient and primary care settings were represented and the outcome measures were related to the specific theories used. A complexity in designing, introducing and evaluating PCC interventions was evident. CONCLUSION: The frameworks, designs and interventions in the studies were in line with the established ethical basis of PCC, whereas outcome measures varied widely. Consensus discussions among researchers in the field are needed to make comparisons between studies feasible. PATIENT OR PUBLIC CONTRIBUTIONS: Patients or the public made no direct contributions, although most of the studied projects included such initiatives.

Patient safety before and after implementing person-centred inpatient care - A quasi-experimental study.

AIMS AND OBJECTIVES: To evaluate aspects of patient safety before and after a person-centred (PC) inpatient care intervention. BACKGROUND: Transitioning from disease-centred to person-centred care requires great effort but can improve patient safety. DESIGN: A quasi-experimental study with data collection preceding and 12 months after a PC inpatient care intervention. METHODS: The study consecutively recruited adult patients (2014, n = 263; 2015/2016, n = 221) admitted to an inpatient care unit. The patients reported experiences of care at discharge and their perceived pain at admission and discharge. Medical records were reviewed to gather data on medications, planned care and clinical observations. The study is reported according to TREND guidelines. RESULTS: At discharge, patients receiving PC inpatient care reported competent medical-technical care. Patients receiving PC inpatient care reported more effective pain relief. Updated prescribed medications at the ward were maintained, and patients were made aware of planned medical care to higher extent during PC inpatient care. The assessment of pulse and body temperature was maintained, but fewer elective care patients had their blood pressure taken during PC inpatient care. Weight assessment was not prioritised during usual or PC inpatient care. CONCLUSIONS: Patients receiving PC inpatient care reported that they were given the best possible care and had less pain at discharge. The PC inpatient care included improved documentation and communication of planned medical care to the patients. Vital signs were more frequently recorded for patients admitted for acute care than patients admitted for elective care. PC inpatient care had no effect on frequency of weight measurements. RELEVANCE TO CLINICAL PRACTICE: PC inpatient care seems beneficial for the patients. Aspects of patient safety such as prescribed medications were maintained, and PC inpatient care seems to enhance the continuity of care. Inpatient clinical observations need further evaluation as healthcare transitions from disease-centred to person-centred care.

Muscle performance and fatigue in compensated chronic liver disease.

Background: A common and debilitating symptom in patients with chronic liver disease is fatigue (CLD). Muscle dysfunction has been suggested to be a key mechanism of fatigue in CLD. Objective: We aimed to evaluate fatigue and the potential association with muscle performance and physical activity in outpatients with CLD. Methods: Two-hundred seventy outpatients with CLD were included, (52 ± 15 years, mean ± SD; 151 females) with autoimmune hepatitis (n = 49), primary biliary cholangitis (n = 45), primary sclerosing cholangitis (n = 46), chronic hepatitis B (n = 57) or C (n = 73). Patients with a Child-Pugh >6 were excluded. The questionnaire Fatigue Impact Scale (FIS) was used to evaluate fatigue, and physical activity was evaluated through a self-reported level of physical activity. Muscle function was assessed with four muscle tests, walking speed, handgrip strength, standing heel-rise test (SHT) and 'Timed Up and Go' test (TUG). Results: The median total FIS score was 30 (40% had FIS > 40, considered high-fatigue). Diminished muscle performance was observed in the SHT (% of predicted value: 53 ± 26%) and with maximum grip strength (85 ± 20%). The FIS score was significantly different between groups of CLDs (p = .004). In multivariate analysis the TUG (p = .001), SHT (p = .005), antidepressants (p < .001), and level of physical activity (p = .001) were associated with fatigue (R2 = 29%). Subjects with higher levels of physical activity had lower FIS (p < .001). Conclusions: In patients with CLD, fatigue was associated with low muscle performance and reduced level of physical activity, which could be a potential therapeutic target.

Person-centred inpatient care - A quasi-experimental study in an internal medicine context.

AIM: The aim of this study was to evaluate effects of person-centred inpatient care on care processes in terms of satisfaction with care and person-centred content in medical records, and to evaluate effects on self-reported health and self-efficacy. BACKGROUND: Internal medicine inpatient care is complex, covering patients varying in age, medical conditions, health status, and other aspects. There has been limited research on the impact of person-centred care (PCC) on satisfaction with care and health outcomes in internal medicine care environments regardless of diagnosis and care pathway. DESIGN: A quasi-experimental study with pre- and postmeasurements. METHODS: Adult patients admitted to an internal medicine inpatient unit were consecutively included over 16 weeks in 2014 and 24 weeks in 2015-2016. Data were collected before a person-centred inpatient care intervention (N = 204) and 12 months after the intervention was implemented (N = 177). Data on satisfaction with care and self-reported health were collected at discharge and medical records were reviewed. The intervention included systematically applied person-centred assessment, health plans, and persistent PCC. RESULTS: After the intervention, patients rated higher satisfaction with care regarding essential components of PCC and more patients had received effective pain relief. There were no differences in information on self-care or medications, self-rated health, or self-efficacy. CONCLUSION: Care focused on the foundations of person-centredness seems to enhance both patients' perceptions of satisfaction and symptom management. Situational aspects such as care pathways should be considered when implementing person-centred inpatient care. TRIAL REGISTRATION: CLINICALTRIALS. GOV, REGISTRATION NUMBER: NCT03725813.

The experiences of physical activity in irritable bowel syndrome-A qualitative study.

AIMS AND OBJECTIVES: To explore experiences of physical activity in patients with Irritable bowel syndrome. BACKGROUND: Irritable bowel syndrome is a common functional bowel disorder. The knowledge of physical activity in Irritable bowel syndrome is limited and has not been qualitatively studied before. METHODS: We adopted a qualitative approach and a hermeneutic analysis. Fifteen patients with Irritable bowel syndrome (10 women) with a median age of 52 (31-78) years were interviewed. The Consolidated criteria for reporting qualitative research was used. RESULTS: Two themes emerged from the data: requirements of physical activity and capability for physical activity. The first of these consisted of five subthemes: add additional value, enable transportation, maintain health, cultivate interests and give a feeling of belonging. These qualities were the patients' requirements of physical activity and comprised the patients' motives and reasons for being physically active. The second consisted of four subthemes: life situation, earlier experiences, self-image, and symptom variation and described the possibility and resources to be physically active in everyday life. The patients made active choices to adjust their physical activity in terms of type, intensity and amount. The two main themes affect each other reciprocally. CONCLUSIONS: The requirements of and capabilities for physical activity should be taken into account when giving advice to patients on physical activity. Physical activity for a person with Irritable bowel syndrome is about finding activities which meet the patient's individual requirements of and capability for physical activity. RELEVANCE TO CLINICAL PRACTICE: This qualitative study on the experience pf physical activity in Irritable bowel syndrome provides knowledge to facilitate promoting physical activity among patients suffering from Irritable bowel syndrome. This knowledge can be used in other diagnosis.

An Intervention for Person-Centered Support in Irritable Bowel Syndrome: Development and Pilot Study.

Irritable bowel syndrome is a common and often chronic functional bowel disorder that can cause severe disruption of daily functioning in those affected, with subsequent high healthcare utilization and work absenteeism. Nurses represent an underutilized group in the current management of irritable bowel syndrome. The aim of this study was to systematically develop a person-centered support intervention in irritable bowel syndrome and evaluate this in a pilot study. The development followed the revised framework for complex interventions from the Medical Research Council and involved literature reviews and multiprofessional expert groups. The intervention was then tested in a pilot study including 17 patients and evaluated through validated questionnaires measuring irritable bowel syndrome symptom severity, gastrointestinal-specific anxiety, and self-efficacy as well as through interviews. There was a significant improvement in irritable bowel syndrome symptom severity between baseline and follow-up, but not for self-efficacy or gastrointestinal-specific anxiety. The patients' perceptions of participating in the intervention were positive and induced a learning process; they were able to form a supportive relationship with the nurse and their ability to self-manage improved. The promising results from this small pilot study in terms of feasibility, potential efficacy, and the patients' positive feedback make this intervention a suitable candidate for a larger controlled trial.

Experiences of the effects of physical activity in persons with irritable bowel syndrome (IBS): a qualitative content analysis.

OBJECTIVE: Increased physical activity has been tested among patients with irritable bowel syndrome (IBS) in a randomized trial which demonstrated improvement in gastrointestinal (GI) symptoms. The patients' experiences of the effects of physical activity on IBS symptoms are unknown. This knowledge is necessary to enable suitable support from health care professionals. The aim of this study was therefore to explore patients' experiences of the effects of physical activity. MATERIALS AND METHODS: Deep interviews were conducted with 15 patients (10 women and 5 men) aged 31-78 years. Their IBS had lasted for 10-57 years. The transcribed interviews were analyzed through a qualitative content analysis. RESULTS: The analysis of the material revealed three themes; GI symptoms, extra-intestinal symptoms, and quality of life (QOL). In relation to GI symptoms, the patients discussed how physical activity affected these symptoms and how they used physical activity to normalize and control their GI symptoms. Extra-intestinal symptoms were also affected by physical activity, and the patients described how they experienced a general bodily wellbeing as well as improved mood and energy in relation to physical activity. In terms of QOL, the patients discussed their perspectives on physical activity as giving them achievements, being pleasurable, and being strengthening of the self. CONCLUSIONS: Our results emphasize the importance of taking into account the patient's experiences of the effects of physical activity when coaching patients with IBS to be physically active. Using a person-centred approach incorporating, the patient's own experiences and resources is the key to successfully promoting physical activity in the clinic.

Health status and most distressing concerns at admission and discharge reported by patients cared for at an internal medical care ward.

BACKGROUND: To promote patients' ability to regain health during hospitalisation, care should not only focus on disease but also on how patients perceive health. There is a lack of studies on how patients admitted for inpatients care perceive their health. AIM: To investigate self-reported health at admission and discharge perceived by patients admitted to an internal medicine ward; and, further, to explore the most distressing concerns at admission and discharge and the factors that influence low health status at discharge. DESIGNS AND METHODS: One hundred and forty-seven patients completed EQ-5D and an open-ended question 'What concerns distress you the most?' at admission and discharge. Descriptive, parametric and nonparametric analyses were used. Subset analyses were performed between three groups based on health change. Factors influencing low health status at discharge were tested in a logistic regression. To analyse most distressing concerns, an inductive content analysis was performed. RESULTS: There was a significant increase in self-rated health for patients with gastrointestinal disorders. At discharge, 50% was identified with improved and 30% with unaltered health. Twenty per cent reported a significant deterioration of health and had the highest frequency of severe problems in all EQ-5D dimensions. Several patients left hospital with distressing symptoms, uncertainty and concerns that had persisted throughout their hospitalisation. Vulnerable patients were characterised by an acute admission, unemployment and longer hospitalisation. Low EQ VAS at admission predicted poor health at discharge. CONCLUSIONS: Many patients had low health status at admission. For some, this did not improve during hospital stay, and for some, it got worse. Our findings highlight a group, whose care can be improved, through information, support and follow-up routines within and outside the hospital. Identifying these patients, efforts to better support patients in their self-care, including relief of pain and worries, at discharge can be established.

Patients' experiences of healthcare encounters in severe irritable bowel syndrome: an analysis based on narrative and feminist theory.

AIMS AND OBJECTIVES: This study aimed to explore patients' experiences of healthcare encounters in severe irritable bowel syndrome. BACKGROUND: Irritable bowel syndrome is a common functional disorder with symptoms such as abdominal pain and disturbed bowel habits, the cause of which is not completely known. Treatments options are limited, and healthcare encounters in irritable bowel syndrome have been described as unsatisfying and frustrating for both patients and professional healthcare providers. Furthermore, the influence of power on healthcare encounters has long been recognised, especially regarding the disadvantaged position of those suffering from functional illness which cannot be identified by commonly used tests or investigations. METHODS: We interviewed 10 patients during 2014, all attending an outpatient clinic and suffering from severe irritable bowel syndrome. Relying on narrative and feminist theory, we explored how they actively negotiate professional discourse communicated to them in the clinical encounter. RESULTS: The patients' experiences of healthcare encounters in irritable bowel syndrome were mostly described as negative, and often induced feelings of confusion and self-doubt. Positive encounters were described as being listened to, believed and taken seriously. Narrators found it especially problematic when healthcare professionals described irritable bowel syndrome as a minor disorder with primarily stress or psychological aetiology and put the responsibility for recovery onto the patient. Patients' actively negotiated such professional discourse by presenting a counternarrative describing their own suffering and strengths, experienced healthcare shortcomings and possible organic aetiology of irritable bowel syndrome. CONCLUSIONS: Patients suffering from severe irritable bowel syndrome described how they often felt a need to protect their positive identities in the face of trivialisation and disbelief by healthcare professionals. RELEVANCE TO CLINICAL PRACTICE: A deepened understanding of patients' experiences of healthcare encounters in irritable bowel syndrome could enable more helpful and supporting interventions by healthcare professionals.

Extensive human suffering: a point prevalence survey of patients' most distressing concerns during inpatient care.

AIM: To explore patients' most distressing concerns during a hospital stay. BACKGROUND: The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting. METHODS: This study was part of a point prevalence survey (PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension. FINDINGS: The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world. CONCLUSION: Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour.

The gendered impact of Irritable Bowel Syndrome: a qualitative study of patients' experiences.

AIM: The aim of the study was to explore the impact of irritable bowel syndrome on daily life from a gender perspective. BACKGROUND: Irritable bowel syndrome is a common functional disorder, characterized by abdominal pain, diarrhoea and/or constipation. Sufferers experience negative emotions due to unpredictable symptoms and sometimes feel trivialized by healthcare professionals. The sufferers' experience of living with this disorder has never been explored from a gender perspective. DESIGN: A qualitative, interpretative method was used. METHODS: A qualitative, hermeneutic method was applied. Interviews were conducted with 19 patients in 2011 and analysed in a constructionist gender framework. Constructionist gender theory views gender and identity as cultural constructs that develop through interplay between the individual and his/her social context and cultural norms. FINDINGS: The main theme to emerge from the interviews was as follows: 'A normative framework of femaleness and maleness leads to suffering for persons with irritable bowel syndrome'. This consists of three interwoven themes: 'Being forced to abandon gender illusions'; 'Being forced to transcend taboos' and 'Reinforced suffering in healthcare encounters'. Men demonstrated masculinity by stressing the importance of being solid family providers while women spoke of nurturing and relational responsibilities in line with traditional notions of femininity. CONCLUSION: The experience of living with irritable bowel syndrome differs between men and women due to differing societal expectations, life situation and the everyday construction of gender identities. Gender stereotyping by healthcare professionals perpetuates rather than alleviates the suffering experienced by men and women with irritable bowel syndrome. In healthcare encounters, women risk being trivialized and men risk being overlooked due to the 'female health concern' label attached to irritable bowel syndrome.

Symptom distress profiles in hospitalized patients in Sweden: a cross-sectional study.

Symptom distress profiles of patients with a variety of diagnoses at two hospitals in Sweden were examined using a point-prevalence cross-sectional survey design. The sample included 710 patients present on internal medicine, surgery, geriatric, and oncology acute care hospital wards of each hospital on a single day. Symptom distress data were collected via structured interviews using a 0-10 numeric rating scale (NRS). Fatigue was the most prevalent symptom, experienced by 76.2% of the patients, followed by pain (65.2%) and sleeping difficulties (52.8%). Symptoms were fairly distressing (median NRS 5-6). Patients experiencing high distress from fatigue and pain were more likely to be female, living alone, and to have more symptoms. Latent class analysis revealed three symptom distress profiles that differed with respect to the degree of distress and number of symptoms. The profiles were not substantially differentiated by diagnoses. Symptom distress needs to be assessed and treated on an individual basis, rather than predicting distress levels based on diagnosis alone.

Efficacy of person-centred care as an intervention in controlled trials - a systematic review.

AIMS AND OBJECTIVES: To identify person-centred care as an intervention in controlled trials, where patients had been involved as a partner, and to describe the outcomes of these studies. BACKGROUND: The notion of person-centred care asserts that patients are persons and partners in care and should not be reduced to their disease alone. DESIGN: A systematic literature review. METHOD: Searches were undertaken in the databases PUBMED and CINAHL. The inclusion criteria were that person-centred care as an intervention was described as a partnership between the caregiver and the patient, and that the studies were randomised controlled trials or quasi-experimental designs. The studies were analysed based on methodology, context and type of intervention, outcomes and effects of the interventions. Eleven trials fulfilled the inclusion criteria. RESULTS: The studies were carried out in a variety of contexts with diverse outcomes. Person-centred care as an intervention was shown to be successful in eight of the studies. The internal and external validity in the studies were generally good. However, as regards the precision of the studies there was a wide variation. CONCLUSIONS: The value and efficacy of person-centred care as an intervention have only been studied to a limited extent. Methodological problems in trial design and execution could account for the general lack of research on person-centred care. Evidence that person-centred care is effective is insufficient, more stringent studies are needed. RELEVANCE TO CLINICAL PRACTICE: The results suggest that person-centred care may lead to significant improvements, but the implementation and relevant effects needs to be assessed in more studies.

Sinonasal Symptoms and Self-Reported Health before and after Endoscopic Pituitary Surgery-A Prospective Study.

Objectives Despite the limited invasiveness of endoscopic transsphenoidal surgery (ETSS), some degree of nasal structure destruction is unavoidable. Our objective was to evaluate sinonasal morbidity and self-reported health before and 6 months after ETSS for pituitary tumors, and to identify possible predictive factors for deterioration in sinonasal health. Design Prospective observational cohort study. Setting University tertiary referral hospital. Participants Totally 109 consecutive adult patients undergoing ETSS for pituitary tumors between 2015 and 2019. Main Outcome Measures Sinonasal symptoms and self-reported health before and 6 months after ETSS, assessed by the Sinonasal Outcome Test (SNOT-22) and the EQ-5D questionnaire. Predictive factors for postoperative deterioration in sinonasal symptoms. Results The overall SNOT-22 score did not change, but the score of the rhinologic domain of SNOT-22 worsened from 6.0 ± 5.9 before to 8.0 ± 7.4 6 months after surgery ( p = 0.011). The EQ-5D visual analog scale improved from 64.0 ± 22.9 before to 71.1 ± 18.7 6 months after surgery ( p = 0.00088). Univariate and multivariable regression analyses showed that prior sinonasal surgery was associated with a significant worsening in rhinologic symptoms 6 months after surgery ( p = 0.046 and p = 0.020, respectively). Conclusions Although self-reported overall health improved, significant deterioration of rhinologic symptoms was seen 6 months after ETSS. This information is important for preoperative patient counselling. Further refinement of the surgical technique and follow-up strategies to reduce postoperative sinonasal morbidity could be of value, especially in patients who have undergone prior sinonasal surgery.

Headache Before and After Endoscopic Transsphenoidal Pituitary Tumor Surgery: A Prospective Study.

Objective Headache is a common symptom among patients with pituitary tumors, as it is in the general population. The aim of the study was to investigate headache as a symptom in patients with pituitary tumors before and 6 months after endoscopic transsphenoidal surgery (TSS). Design This is a prospective observational cohort study. Setting This study was conducted at university tertiary referral hospital. Participants A total of 110 adult patients underwent endoscopic TSS for pituitary tumors. Main Outcome Measures The Migraine Disability Assessment (MIDAS) questionnaire was used before and 6 months after surgery for the assessment of headache. Clinical variables with potential influence on headache were analyzed. Results Sixty-eight (62%) patients experienced headaches at least once during the 3 months before surgery. Thirty (27%) patients reported disabling headache before surgery, with younger age being an independent associated factor ( p < 0.001). In patients with disabling headache before surgery, the median (interquartile range) MIDAS score improved from 78 (27-168) to 16 (2-145; p = 0.049), headache frequency decreased from 45 (20-81) to 14 (4-35) days ( p = 0.009), and headache intensity decreased from 6 (5-8) to 5 (4-7) ( p = 0.011) after surgery. In total, 16 of the 30 (53%) patients reported a clinically relevant improvement and five (17%) a clinically relevant worsening. Four (5%) patients developed new disabling headache. No predictor for postoperative improvement of headache was identified. Conclusion In this prospective study, the results show that disabling headache improves following endoscopic TSS in a subset of patients with pituitary tumors. However, no predictive factors for improvement could be identified.

Circulating brain injury biomarkers increase after endoscopic surgery for pituitary tumors.

Pituitary tumors and subsequent treatment with endoscopic transsphenoidal surgery (ETSS) may cause injury to suprasellar structures, causing long-term fatigue and neurocognitive impairment. A method to quantify brain injury after ETSS is not available. In this prospective, exploratory study of patients undergoing ETSS for pituitary tumors, a novel approach to detect possible neuronal damage is presented. Plasma concentrations of brain injury biomarkers (glial fibrillary acidic protein [GFAP], tau, and neurofilament light [NFL]) were measured the day before surgery, immediately after surgery, at day 1 and 5, and at 6 and 12 months after surgery, using enzyme-linked immunosorbent assays. The association between the increase of biomarkers with preoperative tumor extension and postoperative patient-perceived fatigue was evaluated. Suprasellar tumor extension was assessed from MRI scans, and self-perceived fatigue was assessed using the Multidimensional Fatigue Inventory before and 6 months after surgery. Thirty-five patients were included in the analysis. Compared to baseline, GFAP showed a maximal increase at day 1 after surgery (p = 0.0005), tau peaked postoperatively on the day of surgery (p = 0.019), and NFL reached its maximum at day 5 after surgery (p < 0.0001). The increase in GFAP correlated with preoperative chiasmal compression (p = 0.020). The increase in tau was correlated with preoperative chiasmal (p = 0.011) and hypothalamus compression (p = 0.016), and fatigue score 6 months after surgery (p = 0.016). In conclusion, the concentrations of brain injury biomarkers in blood increased after ETSS for pituitary tumors. The results indicate that postoperative plasma GFAP and tau might reflect astroglial and neuronal damage after ETSS.

Extended Support Within a Person-Centered Practice After Surgery for Patients With Pituitary Tumors: Protocol for a Quasiexperimental Study.

BACKGROUND: Patients with pituitary tumors often live with lifelong consequences of their disease. Treatment options include surgery, radiotherapy, and medical therapy. Symptoms associated with the tumor or its treatment affect several areas of life. Patients need to adhere to long-term contact with both specialist and general health care providers due to the disease, complex treatments, and associated morbidity. The first year after pituitary surgery constitutes an important time period, with medical evaluations after surgery and decisions on hormonal substitution. The development and evaluation of extended patient support during this time are limited. OBJECTIVE: The aim of this study is to evaluate whether support within a person-centered care practice increases wellbeing for patients with pituitary tumors. Our main hypothesis is that the extended support will result in increased psychological wellbeing compared with the support given within standard of care. Secondary objectives are to evaluate whether the extended support, compared with standard care, will result in (1) better health status, (2) less fatigue, (3) higher satisfaction with care, (4) higher self-efficacy, (5) increased person-centered content in care documentation, and (6) sustained patient safety. METHODS: Within a quasiexperimental design, patients diagnosed with a pituitary tumor planned for neurosurgery are consecutively included in a pretest-posttest study performed at a specialist endocrine clinic. The control group receives standard of care after surgery, and the interventional group receives structured patient support for 1 year after surgery based on person-centeredness covering self-management support, accessibility, and continuity. A total of 90 patients are targeted for each group. RESULTS: Recruitment into the control group was performed between Q3 2015 and Q4 2017. Recruitment into the intervention group started in Q4 2017 and is ongoing until Q4 2020. The study is conducted according to the Declaration of Helsinki, and the protocol has received approval from a regional ethical review board. CONCLUSIONS: This study entails an extensive intervention constructed in collaboration between clinicians, patients, and researchers that acknowledges accessibility, continuity, and self-management support within person-centeredness. The study has the potential to compare standard care to person-centered practice adapted specifically for patients with pituitary tumors and evaluated with a combination of patient-reported outcomes and patient-reported experience measures. Following the results, the person-centered practice may also become a useful model to further develop and explore person-centered care for patients with other rare, lifelong conditions. TRIAL REGISTRATION: Researchweb.org. https://www.researchweb.org/is/sverige/project/161671. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/17697.

Hospital Design with Nature Films Reduces Stress-Related Variables in Patients Undergoing Colonoscopy.

PURPOSE: To examine whether patients' experiences could be improved during colonoscopy by designing the examination room to include a digital screen showing calm nature films. BACKGROUND: Colonoscopy is the gold standard for examination of the large intestine and the rectum. Around 50% of individuals invited for colorectal cancer screening choose to refrain from the screening due to fear and anxiety. It is therefore important to improve patients' comfort during the procedure. METHOD: One of the four endoscopy rooms was rebuilt to include a large digital screen showing calm nature films. Patients were randomized to intervention (i.e., the room showing films) or control. During the colonoscopy, pulse and oxygen saturation were measured and the patients graded the intensity of pain and anxiety. Blood samples were taken regularly during the examination and were analyzed for glucose, cortisol, and prolactin. RESULTS: The presence of calm nature films during colonoscopy decreased the release of cortisol, increased prolactin levels, and enhanced oxygen saturation. These effects were more apparent in patients who were unfamiliar with the procedure and the environment, patients who underwent the examination without analgesics or sedation, and patients whose examination procedure was relatively difficult and took a long time. CONCLUSIONS: The intervention described in this study is easy to implement and might help improve the patient experience during colonoscopy. However, this study was performed in a single health institution, and more studies are needed to further explore the role of film interventions in endoscopic and other medical procedures.