| 1. |
- Pihl Lesnovska, Katarina, et al.
(författare)
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The Process of Developing a Disease Activity Index in Microscopic Colitis
- 2022
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Ingår i: Journal of Crohn's & Colitis. - Oxford, United Kingdom : Oxford University Press. - 1873-9946 .- 1876-4479. ; 16:3, s. 452-459
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Tidskriftsartikel (refereegranskat)abstract
- Background and Aims: Patient-reported outcome measures [PROMs] aim to measure patients perception of how their disorder influences everyday functioning. The objective of this study was to develop a PROM to assess disease activity in microscopic colitis [MC] fulfilling the requirements of the Food and Drug Administration [FDA].Methods: The European Microscopic Colitis Activity Index [E-MCAT] was developed in four steps. [1] A list of symptoms associated with active MC was created by a group of experts in the field. [2] Content validity of the symptoms was performed by experts [n= 14] and patients [n = 79] using the Content Validity Index. [3] Questions and response alternatives were created for each symptom, and validity of the E-MCAI was evaluated with cognitive interviews with patients [n= 7] and by the experts. [4] A pilot postal survey was performed to ensure usability.Results: Seven of the symptoms related to active MC fulfilled the criteria for content validity and were included in the E-MCAI: stool consistency, stool frequency, stools at night, feel a need to pass more stools shortly after a bowel movement, urgent need to empty the bowel, leakage of stool and abdominal pain.The development and validation process resulted in the current version of the E-MCAI consisting of six questions related to MC. Conclusions: The E-MCAI was developed using the methods advocated by the FDA.The evaluation indicates good content validity. Further evaluation will be performed to achieve construct validity, reliability and responsiveness in future cross-sectional and longitudinal studies.
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| 2. |
- Pihl Lesnovska, Katarina, et al.
(författare)
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Microscopic colitis: Struggling with an invisible, disabling disease
- 2019
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Ingår i: Journal of Clinical Nursing. - : WILEY. - 0962-1067 .- 1365-2702. ; 28:19-20, s. 3408-3415
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Tidskriftsartikel (refereegranskat)abstract
- Background and aims Microscopic colitis causes chronic or recurrent nonbloody, watery diarrhoea, which is associated with urgency, faecal incontinence and abdominal pain. The patients health-related quality of life is often impaired. In microscopic colitis, health-related quality of life has been studied using questionnaires originally constructed and validated for patients with inflammatory bowel disease. The aim of this study was to explore the impact of microscopic colitis on everyday life. Methods and results Inductive, qualitative, semi-structured interviews were performed with 15 persons suffering from microscopic colitis. Content analysis was used to explore the impact of the condition on everyday life. The study followed the consolidated criteria for reporting qualitative research. The qualitative inductive content analysis generated one theme and five subthemes. The theme was "struggling with an invisible, disabling disease." The five subthemes were as follows: physical experience of bowel function; associated symptoms affecting quality of life; impact of the disease on everyday life; disease-related worry; and strategies for managing everyday life. Conclusions The semi-structured interviews with persons suffering from microscopic colitis provided a wide spectrum of answers to the question of how everyday life is affected. Microscopic colitis can be a disabling life experience, and patients develop different strategies to adapt, cope and regain their previous performance level. Relevance to clinical practice There are new and interesting findings in our study that everyday life still remains affected even when patients are in remission. These findings have relevance in clinical practice and may create a better understanding of the patients symptoms and situation.
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| 3. |
- Pihl Lesnovska, Katarina, et al.
(författare)
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The quality of care questionnaire: development of a valid measure for persons with inflammatory bowel disease
- 2018
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Ingår i: Scandinavian Journal of Gastroenterology. - : TAYLOR & FRANCIS LTD. - 0036-5521 .- 1502-7708. ; 53:9, s. 1043-1050
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Tidskriftsartikel (refereegranskat)abstract
- Background and aims: Quality of care is important in lifelong illnesses such as inflammatory bowel disease (IBD). Valid, reliable and short questionnaires to measure quality of care among persons with IBD are needed. The aim of this study was to develop a patient-derived questionnaire measuring quality of care in persons with IBD.Methods and results: The development of the questionnaire The Quality of Care -Questionnaire (QoC-Q) was based on a literature review of studies measuring quality of care, and the results of two qualitative studies aiming to identify the knowledge need and perception of health care among persons with IBD. Further development and evaluation was done by focus groups, individual testing and cognitive interviews with persons with IBD, as well as evaluation by a group of professionals. After the development, the questionnaire was tested for validity and test-retest reliability in 294 persons with IBD.Conclusions: The QoC-Q is showing promising validity and reliability for measuring the subjective perception of quality of care. Further testing in clinical practice is suggested to assess if the QoC-Q can be used to evaluate care and areas of improvement in health care for persons living with IBD.
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| 4. |
- Pihl Lesnovska, Katarina, 1973-, et al.
(författare)
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Healthcare as perceived by persons with inflammatory bowel disease – a focus group study
- 2017
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Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell. - 0962-1067. ; 26:21-22, s. 3677-3687
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Tidskriftsartikel (refereegranskat)abstract
- Background: The quality of care plays an important role in the life of persons with a chronic disease. In order to define what persons with inflammatory bowel disease perceive as high quality care, greater focus must be placed on the individual’s own perspective of living with the condition. Design: A qualitative exploratory study was conducted based on focus groups. Methods: Five focus groups were conducted with adult persons living with inflammatory bowel disease, fourteen men and twelve women aged 19-76 years. The interviews were performed between January and June 2014. Results: The perceptions of healthcare from the perspective of persons living with inflammatory bowel disease were summarized in two categories: “Professional attitudes of healthcare staff” and “Structure of the healthcare organization”. Persons with Inflammatory bowel disease want to be encountered with respect, experience trust and obtain information at the right time. They also expect shared decision-making, communication and to encounter competent healthcare professionals. Furthermore, the expectations on and perceptions of the structure of the healthcare organization comprises access to care, accommodation, continuity of care, as well as the pros and cons of specialized care. Conclusion: The findings show the importance of establishing a respectful and trusting relationship, facilitating healthcare staff and persons with inflammatory bowel disease to work as a team in fulfilling individual care needs – but there is room for improvement in terms of quality of care. Relevance to clinical practice: A person-centred approach, which place the individual and her/his family at the centre, considering them experts on their own health and enabling them to collaborate with healthcare staff, seems important to reach a high quality healthcare organization for patients with IBD.
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| 5. |
- Pihl Lesnovska, Katarina, 1973-
(författare)
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Life situation among persons living with inflammatory bowel disease.
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Living with inflammatory bowel disease (IBD) affects physical, psychological and social dimensions, limiting the ability to engage in daily activities. Persons with IBD may need frequent and lifelong contacts with the healthcare (HC), highlighting the importance of quality care. High quality HC for persons with IBD involves a partnership between the HC professionals and the person living with the disease. Information is essential, the more a person knows about their disease, the more concordant and satisfied with their treatment they are likely to be.The overall aim of this thesis was to describe the knowledge need, life situation and perception of HC among persons living with IBD, in order to develop a questionnaire to evaluate the quality of HC.This thesis is based on three studies that are presented in four papers. Qualitative methods were used to describe aspects of life situation in relation to the disease, whereas quantitative method was used to develop a questionnaire measuring quality of care. Study I and II have an inductive qualitative design. In study I, qualitative interviews with 30 people were performed to describe the knowledge need and experience of critical incidents in daily life while living with IBD. The interviews in study I were analyzed using content analysis (results presented in Paper I) and critical incident technique (results presented in Paper II). In study II, the perceptions of HC among persons living with IBD was explored in five focus group interviews and two individual interviews, in total n=26. Study III aimed to develop and evaluate a questionnaire, measuring quality of care among persons with IBD, including 318 persons with IBD and 8 professionals. The knowledge need among persons with IBD focused on managing symptoms and course of the disease and learning to assimilate the information in order to manage everyday life. Losing bowel control was of great concern for most of the informants in the study. Many of the informants said that “the bowel ruled their life” and that it influenced them to a great extent in their daily lives. The perception of HC among persons with IBD meant being met with respect and mutual trust, receiving information at the right time, shared decision-making, competence and communication, access to care, accommodation, continuity of care and the pros and cons of specialized care. The quality of care questionnaire QoC-IBD was constructed in five dimensions, building on the results from Study I and II. The dimensions were trust and respect, decision-making, information, continuity of care and access to care consisting of 21 questions in total. QoC-IBD is a short, self-administrated questionnaire that measures experiences of healthcare among persons with IBD with promising validity and reliability.To improve quality of care, HC is recommended to consider individual care needs and take the person’s daily life and social context into account. The QoC-IBD questionnaire measures the subjective experience of quality of care. Further testing in clinical practice is necessary to evaluate if QoC-IBD can be used to evaluate the care given and areas of improvement in HC for persons living with IBD.
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| 6. |
- Pihl Lesnovska, Katarina, et al.
(författare)
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Critical situations in daily life as experienced by patients with inflammatory bowel disease
- 2016
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Ingår i: Gastroenterology Nursing. - : Lippincott Williams & Wilkins. - 1042-895X. ; 39:3, s. 195-203
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Tidskriftsartikel (refereegranskat)abstract
- Crohn disease and ulcerative colitis, collectively known as inflammatory bowel disease (IBD), are chronic and have a fluctuating clinical course that impacts daily life. Daily life with a chronic disease involves thinking and worrying about the limitations that chronic disease causes. Knowledge about how patients who suffer from IBD manage critical incidents in daily life is lacking. The aim of the study was to describe how patients living with IBD experience critical incidents in daily life in relation to their disease and symptoms. Thirty adult patients were interviewed focusing on critical incidents in daily life. Data were analyzed using the critical incident technique. The study comprised 224 critical incidents and was grouped into 21 subcategories and 5 categories: losing bowel control, having a body that smells, being unable to meet own and others' expectations, not being believed or seen, and experiencing frustration due to side effects and ineffective treatment. These categories formed one main area describing the overall result "The bowels rule life." The uncertain nature of IBD created critical incidents in which the bowel ruled life, causing patients to avoid social interaction. It also placed considerable demands on the family and sometimes had a negative effect on the afflicted person's career.This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially.
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| 7. |
- Pihl Lesnovska, Katarina, et al.
(författare)
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What do patients need to know? Living with inflammatory bowel disease
- 2014
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Ingår i: Journal of Clinical Nursing. - : Wiley-Blackwell. - 0962-1067 .- 1365-2702. ; 23:11-12, s. 1718-1725
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: To explore the need for knowledge as expressed by patients diagnosed with inflammatory bowel disease.BACKGROUND: Inflammatory bowel disease has a major impact on physical and emotional well-being, placing considerable demands on patients' management of daily activities. Although inflammatory bowel disease patients' level of knowledge about their disease has been previously studied, it is necessary to learn more about their self-expressed needs.DESIGN: The study was designed to explore patients' need for knowledge; therefore, an inductive method was chosen.METHODS: Thirty patients with inflammatory bowel disease were interviewed. Content analysis was used to describe their need for knowledge.RESULTS: The analysis generated three categories and eight subcategories: (1) knowledge related to the course of the disease (subcategories: understanding causal relationships between symptoms and the disease, complications related to the disease and understanding treatment), (2) knowledge related to managing everyday life (subcategories: behaviour that enhances well-being and managing social life) and (3) difficulty understanding and assimilating information (subcategories: shifting knowledge needs, help to understand information and reasons for wanting or not wanting knowledge).CONCLUSION: Knowledge needs were related to what to expect when living with inflammatory bowel disease in order to manage everyday life. There was a great variation in the need for knowledge, which was greatest immediately following diagnosis and during relapse.RELEVANCE TO CLINICAL PRACTICE: It is important for healthcare providers to ascertain the patients' individual knowledge needs and together with them formulate an individual care plan that gives the patient the necessary knowledge to manage their health and social life.
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| 8. |
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| 9. |
- Pihl Lesnovska, Katarina, et al.
(författare)
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Patients' Perspective of Factors Influencing Quality of Life While Living With Crohn Disease
- 2010
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Ingår i: Gastroenterology Nursing. - : Lippincott Williams & Wilkins. - 1042-895X .- 1538-9766. ; 33:1, s. 37-44
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Tidskriftsartikel (refereegranskat)abstract
- Crohn disease is a chronic inflammatory bowel disease of unknown etiology. The chronic, relapsing nature of Crohn disease produces physical, psychological, and social stress. The disease occurs early in life, and the effects of Crohn disease on daily life are associated with symptom burden; thus, managing their disease and coping with its impact is a lifelong process for sufferers. This study was undertaken to identify and describe the meaning of quality of life in patients with Crohn disease. Using a grounded theory methodology, 11 interviews were performed with 6 men and 5 women, 29–83 years of age, all suffering from Crohn disease. The experience of quality of life was associated with limitations in daily activity, the major theme that emerged from the analysis. Quality of life varied depending on how the patient managed limitations related to the symptoms of the disease. The categories of self-image, confirmatory relations, powerlessness, attitude toward life, and sense of well-being were conceptualized as the dominant themes derived from the data. When caring for these patients, it is important to identify limitations and provide support so that patients are able to maintain a daily life that can be perceived as normal and routine.
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