Headache in patients with non-functioning pituitary adenoma before and after transsphenoidal surgery - a prospective study.

PURPOSE: To study the long-term effect of transsphenoidal surgery (TSS) on headache in patients with non-functioning pituitary adenoma (NFPA) and identify factors predicting headache relief following TSS. METHODS: We evaluated headache in 101 consecutive patients with NFPA who underwent TSS from September 2015 to December 2021, preoperatively and 12-months post-surgery, by using the Migraine Disability Assessment (MIDAS) questionnaire. Health-related quality of life (QoL) was assessed using the EQ-5D visual analogue scale (EQ-VAS). RESULTS: Of 101 patients, 27 (27%) experienced disabling preoperative headache. Among these, the median total MIDAS score improved from 60 (interquartile range (IQR): 19-140) to 10 (IQR: 0-49) (P = 0.004). Additionally, headache frequency over a 90-day period decreased from 45 (IQR: 25-83) to 6 (IQR: 3-36) days (P = 0.002), and headache intensity decreased from 5 (IQR: 4-7) to 4 (IQR: 2-7) (P = 0.016) at 12-months post-surgery. At 12 months post-surgery, 18 (67%) of 27 patients with preoperatively disabling headache showed clinically relevant improvement of their headache, 4 (15%) showed deterioration, and 5 (19%) remained unchanged. In patients with clinically relevant improvement of their headache, the EQ-VAS score improved from 50 (IQR: 30 - 7) to 80 (IQR: 65-86) (P < 0.001). Of the 74 patients with no preoperative headache, 11 (15%) developed postoperative headache. We identified no clinical factors predicting postoperative headache relief. CONCLUSION: The study supports that clinically significant and long-lasting improvements of disabling headache and QoL can be achieved with TSS in a substantial number of patients with NFPA.

Symptoms at stroke onset as described by patients: a qualitative study.

BACKGROUND: Stroke is a common and severe disease that requires prompt care. Symptom expressions as one-sided weakness and speech difficulties are common and included in public stroke campaigns. For some patients stroke can present with subtle and less common symptoms, difficult to interpret. The symptom severity assessed by the National Institutes of Health Stroke Scale has decreased, and symptoms at onset may have changed. Therefore, we aimed to investigate how patients describe their symptoms at the onset of a first-time stroke. METHODS: The study used a qualitative descriptive design and conventional content analysis. Data were collected through recorded interviews with 27 patients aged 18 years and older hospitalised with a first-time stroke between October 2018 and April 2020. Data were analysed on a manifest level. RESULTS: Symptoms at stroke onset were presented in two themes: Altered Reality and Discomfort and Changed Body Functions and described in five categories. Various types of symptoms were found. All symptoms were perceived as sudden, persistent, and never experienced before and this appear as a "red thread" in the result. Regardless of symptom expressions, no specific symptom was described as more severe than another. CONCLUSIONS: Stroke symptoms were described with a variety of expressions. Many described complex symptoms not typical of stroke, which can make it difficult to recognise the symptoms as a stroke and delay medical care. Public stroke campaigns should emphasize the importance of seeking medical care at the slightest suspicion of stroke and could be designed to help achieve this.

Seeking lifestyle counselling at primary health care centres: a cross-sectional study in the Swedish population.

BACKGROUND: Millions of people follow an unhealthy lifestyle in terms of tobacco consumption, hazardous use of alcohol, poor eating habits, and insufficient physical activity. Healthy lifestyles can to a large extent prevent and/or delay progression of non-communicable diseases. Factors influencing persons health-seeking behaviour regarding unhealthy lifestyles are of importance for sustainable health-promotive and disease-preventive work in primary health care. Generally, lifestyle interventions within primary health care are seen as feasible, but rarely reach all members of the general population. Few studies have been conducted about the likelihood among the general population to voluntarily contact a primary health care centre for support regarding lifestyle changes. The present study therefore aimed to investigate the general population's likelihood of contacting a primary health care centre regarding their lifestyles, and factors associated with a lower such likelihood. METHODS: A probability sample of adults living in Sweden (n = 3 750) were invited to participate in a cross-sectional survey regarding how societal developments affect attitudes and behaviours of the adult Swedish population. Data were collected between September and December 2020. Participants completed a questionnaire about lifestyle changes, and the data were analysed using descriptive statistics, Chi-square test and logistic regression analysis. RESULTS: The response rate was 52.0% (n = 1 896). Few persons responded that they would be likely to contact a primary health care centre for support regarding their lifestyles. Factors predicting a lower likelihood of contacting primary health care included few yearly visits to a primary health care centre, male sex, and living in a rural area. CONCLUSIONS: Primary health care centres are not the first choice for lifestyle counselling for the majority of adults living in Sweden. We have identified factors predicting low likelihood of using the support available at these centres. In order to work with sustainable and visible health-promotive and disease-preventive strategies at primary health care centres, these settings need to find valid methods to involve and collaborate with the members of the general community, to meet the needs of a population struggling with unhealthy lifestyles.

Self-Efficacy to Manage Chronic Disease (SEMCD) scale: translation and evaluation of measurement properties for a swedish version.

BACKGROUND: Reinforcing self-efficacy in patients is important in person-centered care; therefore, reliable and valid measures of a person's self-efficacy is of clinical relevance. A questionnaire suitable for self-efficacy and patient engagement that is not limited to a particular condition is the Self-efficacy to Manage Chronic Disease (SEMCD). This study aims to evaluate the measurement properties of a Swedish translation of the SEMCD with a Rasch analysis. METHODS: The translation and cultural adaptation of the SEMCD was performed according to the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) recommendations. Self-reported data was collected from two cohorts: patients with pituitary tumors (n = 86) and patients on sick leave due to common mental disorders (n = 209). Measurement properties were evaluated with a Rasch analysis in RUMM2030. RESULTS: The original six-item SEMCD did not fit to a unidimensional scale. Two items, item 5 and item 6, deviated both statistically and conceptually and were removed. A four-item solution, the SEMCD-4 with collapsed thresholds for mid-range response options, showed good targeting and unidimensionality, no item misfit, and a reliability of 0.83. CONCLUSION: In a Swedish context with a mix of patients with pituitary tumors or common mental disorders, SEMCD-4 showed satisfactory measurement properties. Thus, SEMCD-4 could be used to identify patient self-efficacy in long-term illnesses. This knowledge about patient self-efficacy may be of importance to tailor person-centered support based on each patient´s resources, needs and goals.

The importance of personal documentation for patients living with long-term illness symptoms after pituitary surgery: A Constructivist Grounded Theory study.

INTRODUCTION: Despite surgical treatment, pituitary adenomas often cause long-term illness symptoms, that profoundly impact patients' quality of life physically, psychologically and socially. Healthcare professionals often fail to recognize and discuss the ensuing problems. Personal documentation, such as symptom monitoring, reflective writing or even posts on social media, may help this patient group to manage their daily life and support communication of their care needs. Documentation strategies and the role of documentation for people with long-term symptoms after pituitary adenoma surgery are currently unknown. AIM: To examine the effects and strategies of documenting symptoms, activities and physical and emotional well-being among people living with long-term pituitary adenoma. METHODS: In this Constructivist Grounded Theory study, 12 individuals living with long-term illness symptoms after pituitary adenoma surgery described their documentation strategies in in-depth interviews using teleconferencing and photo-elicitation between August and October 2020. RESULTS: Strategies for documentation included analogue and digital media. One core category (Exercising autonomy) and three categories describing processes (Gaining insight, Striving for control and Sharing) emerged from the analysis. These three interrelated processes become an expression of autonomy to manage life and make sense of chronic illness. Personal documentation is a flexible tool that is used more extensively in times of ill health and less in times of relative well-being. Sharing documentation with healthcare professionals facilitated care planning and sharing with friends and family fostered emotional well-being. CONCLUSION: Personal documentation is a valuable resource for managing life after pituitary adenoma surgery. The current findings may be relevant to other chronic illnesses. Further research exploring potential tools for personal documentation is needed. PATIENT OR PUBLIC CONTRIBUTION: We deliberately chose a Constructivist Grounded Theory approach for this interview study. Using Constructivist Grounded Theory, we gave people living with long-term symptoms a voice, allowing them to freely speak about managing their illness in connection with personal documentation. The theoretical sampling approach enabled us to invite participants that could provide a broad overview of the landscape of personal documentation.

District nurses' perspectives on health-promotive and disease-preventive work at primary health care centres: A qualitative study.

BACKGROUND: Health promotion and disease prevention are of utmost importance for sustainable health care and primary health care. District nurses play a key role in primary health care centres, where they meet people suffering from, and/or having risk factors for, non-communicable diseases. AIM: The study aim was to describe district nurses' perspectives on their health-promotive/disease-preventive work at primary health care centres. METHODS: Interviews were conducted with 16 district nurses at primary health care centres in Sweden. An interpretive descriptive approach was employed for the analysis. FINDINGS: The district nurses integrated a focus on health-promotive and disease-preventive work into every patient encounter, which manifested through four intertwined themes: finding opportunities and striving for visibility; building relationships; considering patients' life situations; and inviting patients to share responsibility. Our findings show how, through a flexible approach, the district nurses strived for equal health and care for all, and how the care was built on a shared responsibility between the district nurse and patient, where district nurses aimed to empower patients to take action for their own health. CONCLUSION: The district nurses described health-promotive endeavours, in line with person-centred care in prioritising building relationships with patients, starting from their lived experience. They spoke of barriers, at both micro and macro levels, to health-promotive/disease-preventive work. These included language barriers, the impact of the media, and the overall organisation of primary health care. The work at primary health care centres should be restructured to clarify the district nurse's role, and to strengthen community outreach, and thereby improve individuals' access to support in lifestyle changes.

Illness perspectives in patients with primary aldosteronism.

OBJECTIVE: The burden of symptoms and treatment in patients with primary aldosteronism (PA), as well as the patients' experience of the health care is sparsely studied. The objectives of this study were to describe symptoms considered to be the most troublesome by patients with PA, and to explore health related worries and expectations following treatment. METHODS: This was an explorative qualitative study where 25 patients with PA, diagnosed between 2017 and 2019, were included; 13 patients who had undergone adrenalectomy and 12 who were receiving medical treatment. Data was collected during six group interviews and analyzed using a thematic approach. RESULTS: Three main themes were identified: 1) Distress of the past, where the most important issues were struggle to receive a correct diagnosis, impaired well-being and the consumption of a large number of tablets, 2) Satisfaction after receiving a correct diagnosis, both in patients with unilateral and bilateral disease, but also dissatisfaction with lack of information about the disease, and 3) Future concerns, where worries about the long-term effects of PA on health in general dominated. CONCLUSIONS: Our findings illustrate several important issues related to PA where improvements in patient care are needed, including actions aiming at shortening the long diagnostic delay, a thorough information to the patients about the disease is of great importance, and that all patients with PA, regardless of treatment, would benefit from a structured long-term follow-up.

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.

Maintaining work life under threat of symptoms: a grounded theory study of work life experiences in persons with Irritable Bowel Syndrome.

BACKGROUND: Irritable Bowel Syndrome (IBS) is a highly prevalent functional gastrointestinal disorder. Earlier studies have shown that IBS can limit the ability to perform at work and lead to absenteeism. However, few studies focus on work life experiences based on patients' narratives. The purpose of this study was to construct a theory for how persons with IBS maintain their work life. METHODS: A qualitative study was performed using constructivist grounded theory. Semi-structured interviews with 15 women and 8 men with IBS (26-64 years of age) were conducted. Fourteen participants worked full-time, six worked part-time and three were on sick leave. The interviews were transcribed verbatim and coded line-by-line, incident-by-incident and thereafter focused coding was done. From the data and codes, categories were generated. Finally, a core category was constructed explaining the process of maintaining work life when living with IBS. RESULTS: Balancing work life while being under threat of symptoms constituted of four categories, being prepared, restricting impact, reconciling and adjusting. Persons with IBS restricted the impact of IBS on work by using strategies and upholding daily routines and strived to being prepared by exerting control over work life. These ongoing processes served to limit the influence of IBS on work by symptoms being less intense, perceived as less frequent, or not as bothersome. Reconciling IBS with work life was understood as a successful outcome from being prepared and restricting impact but was also influenced by the individual's outlook on life. Adjusting to other people at work interfered with the strategies of being prepared, restricting impact, and reconciling, leaving persons with IBS more susceptible to symptoms. CONCLUSIONS: This study deepens the understanding of the work situation for persons with IBS. Health care professionals can use the results of this study in the dialogue with the patient discussing work ability and sick leave. The results imply that although balancing work life under threat of symptoms can be a struggle, there are strategies that persons with IBS and employers together can initiate and use to reduce impact on work on several different levels.

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.

Measuring patient experiences of person-centred care: Translation, cultural adaption and qualitative evaluation of item candidates for use in England and Sweden.

BACKGROUND: To facilitate change for person-centred care, there is a need to invest in measures to assess if and how healthcare systems are delivering care based on the principles of person-centred care. This paper describes the first phase in developing an item bank to measure patients' experiences of person-centred care. AIM: The aim was to translate, culturally adapt and evaluate candidate items to measure person-centred care from the patient's perspective. METHODS: The Centre for person-centred care at Gothenburg university and the UK Person-centred and coordinated care model informed our conceptual framework. The initial pool of item candidates originated from a previous systematic review where 855 items were identified. In this study, a mixed method design was used involving persons with experience as patients, caregivers, healthcare professionals and researchers in person-centred care or questionnaire design (n = 84). The item analysis included two validation rounds using web questionnaires, a focus group and cognitive interviews. RESULTS: From the initial pool, 155 items covering core domains and subdomains of person-centred and coordinated care were selected for translation and qualitative item analysis. After translation, 44 items were excluded (duplicates). After the first validation round, 21 items were rephrased and 35 were excluded (due to low ratings, lack of comprehensibility, were duplicates or too specifically phrased). To reflect the ethical basis of person-centred care, rewordings were also made to encompass the patient as an active partner in care and where communication and information goes two-ways and care is co-created. After the second round, 11 items were rephrased and 25 items were excluded (for being redundant/repetitive). Six new items were added (covering access to care, patient capabilities, mental well-being and identifying goals). CONCLUSION: We have developed a first set of 57 items to proceed towards developing an item bank to measure the patient experiences of person-centred care.

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.

Self-rated health over a two-year period after breast cancer surgery: prospective ratings and retrospective rating by means of a health-line.

BACKGROUND: There are difficulties in clinical assessment of patients' health, and there is a need for evaluating instruments that measures self-rated health over time and that are based on the patient's own experiences of their health situation. AIM: To describe the trajectory of self-rated health given in a retrospective health-line and its correspondence with the ratings of health given at six different time points during 2 years following a first breast cancer surgery. DESIGNS AND METHODS: An explorative prospective cohort study presented according to the STROBE guideline. At six time points, 459 women (26-63 years) completed assessments of self-rated health during 2 years following a first breast cancer surgery. Subsequently, the women retrospectively rated health month by month over the two years by means of a health-line. The women were included consecutively in 2007-2009, last data collection was performed in 2012. Statistical analyses were used to compare the health-line with previous ratings. RESULTS: Most women (74-88%) rated their health as good, very good or excellent at all six time points. Health-line ratings were somewhat lower than the ratings made at the actual time-point; however, the illustrated trajectories back in time followed the same patterns as the women had reported during the two years. The lowest ratings of self-rated health were reported at four months after surgery. The retrospective illustrations varied greatly, and poorer health was reported by women undergoing chemotherapy, with lower education and who reported more life events. CONCLUSIONS: Even if the retrospective ratings by the health-line were somewhat lower than the ratings at the actual time-point, the health-line captures the health trajectory. The individual graphic illustration by means of a health-line may serve as a basis for assessment and support patient health narratives. The findings indicate that life event, lower education and chemotherapy influence concurrent and retrospective self-assessment of health.

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.

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.

Implementing a Feasible Exercise Programme in an Allogeneic Haematopoietic Stem Cell Transplantation Setting-Impact on Physical Activity and Fatigue.

Physical exercise for patients treated with allogeneic haematopoietic stem cell transplantation (allo-HSCT) has shown positive effects on the quality of life and fatigue in experimental trials. However, there is a need for longitudinal evaluation of exercise programmes implemented in a real-world clinical setting. The aim of this prospective study was to evaluate the impact of an exercise programme introduced before allo-HSCT on physical activity and fatigue before, during and after in-patient care. A structured exercise programme, including strength and endurance exercises, was implemented at a Swedish university hospital four weeks before transplantation, continuing during in-patient care and after discharge. Between March 2016 and May 2018, 67 adult patients, 33 women and 34 men with a mean age of 55.5 years participated. Fatigue was measured by the Multidimensional Fatigue Inventory at four time points. The patients documented their exercises on a checklist each week during the entire study period. The fatigue trajectory differed between various sub-groups, thus individualized supervision and support to maintain motivation is needed. In conclusion, a structured yet realistic exercise programme before admission is beneficial for allo-HSCT patients in order to reduce fatigue and prepare them for transplantation both physically and mentally.

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.

Undergoing repeated colonoscopies - experiences from patients with inflammatory bowel disease.

Background: Patients with Inflammatory Bowel Disease (IBD) undergo repeated colonoscopies to monitor their lifelong disease.Objective: To describe experiences from repeated colonoscopies in patients with IBD.Methods: Within a qualitative design 33 patients with IBD who had undergone at least three colonoscopies were interviewed by telephone. Hermeneutic interpretation served as the framework of the analysis.Results: The colonoscopy procedure was explained as strenuous to undergo and interfered with daily life. It reminded patients of a lifelong disease, but the necessity of the colonoscopy, being life-saving, was highlighted. The colonoscopies entailed several unpredictable aspects - no control over pain, potential blame and unpredictable care. Shame, inferiority and uncertainty enhanced the feeling of being exposed and vulnerable.Conclusion: Repeated colonoscopies can be perceived as both an assurance of life and a reminder of a lifelong illness. Healthcare professionals need to provide support in terms of awareness of patients' vulnerability, despite extensive experience of the colonoscopy procedure. For example, person-centred care and continuity in care are potential interventions based on the results of this study. Another important aspect of care is to minimise interference in everyday life to prevent feelings of loss of the healthy self, for example by self-administrated outpatient booking systems.Summarize the established knowledge on this subject. • Previous research in quality related to colonoscopy has mainly focused on technical and medical aspects. • Knowledge based on the patients' perspective is rare and the few existing studies included mainly persons included in screening programs.What are the significant and/or new findings of this study? • Patients with IBD undergoing repeated colonoscopies express specific needs in several aspects related to the colonoscopy procedure: • Continuity and a person-centered approach from healthcare professionals. • Support to cope with feelings of shame and inferiority as well as pain.